#877 Be Undeniable

Karen has type 1 diabetes and a great message.

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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 877 of the Juicebox Podcast.

Today I'll be speaking with Karen and Karen has had type one diabetes for a very long time. She's on the show today to talk about her life with type one, and to speak a little bit about being an advocate for your own medical needs. While you're listening today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please Always consult a physician before making any changes to your health care plan, or becoming bold with insulin. Now, if you're a US resident who has type one diabetes, or is the caregiver of someone with type one, please consider going to T one D exchange.org. Forward slash juice box and completing their survey. This survey helps support type one diabetes research, you can do it completely from your home. It's HIPAA compliant, absolutely anonymous take you maybe 10 minutes or a little less, you're really going to help AT T one D exchange.org. Forward slash juice box. If you're looking for some nice comfy sheets, jammies, or actually joggers, like I'm wearing now cozy earth.com use the offer code juice box at checkout to save 35% This episode of The Juicebox Podcast is brought to you by us med us med is where my daughter gets her diabetes supplies from and you could to us med.com forward slash juice box or call 888-721-1514 go online or call the number get your free benefits check and get started with us med. today's podcast is also sponsored by touched by type one.org touched by type one is a wonderful organization helping people with type one diabetes. And they've asked me to ask you if you wouldn't go check them out on Facebook, Instagram, and of course their website touched by type one.org. Check out that link. See all the good they're doing? Check out what's going on over there. They have a ton of different things coming up, including a speaking event in Orlando that I will be at touched by type one bad word.

Karen 2:29
My name is Karen and I live about 20 miles outside of Boston. And I was diagnosed with diabetes in 1977 1977.

Scott Benner 2:37
Did you live in Boston your whole life or? Yes. Really? How come you don't sound like you're like going to the bar or something like that?

Karen 2:48
Well, because my mother was from New Jersey. My father was from Missouri.

Scott Benner 2:53
It's like why do you spend the most? You didn't pick up tonight at home? Right? Yeah,

Karen 2:59
I love when you say water, you know, brings me back to my grandmother's house in New Jersey.

Scott Benner 3:05
You should tell my kids that because daily, I am mocked at my house still. Yeah. And the truth of it is if you told me right now, you say the word in one way. But there's another way to say it. And it's correct. What is it? I don't even know that I could. I don't even know. Yeah. Like I know that I say data because people have beat it into me. Yeah, right. But it's my inclination to say data. Yeah, but I can tell you data and data. I know that the stuff that comes out of the faucet is water. And I know that somebody else says it a different way. And I mean, is it water?

Unknown Speaker 3:51
I don't even know.

Scott Benner 3:53
Karen I don't even know. Was I wrong? No, you're not wrong. So, so I'm supposed to be saying water.

Karen 4:01
That's a Well, that's what people will say water.

Unknown Speaker 4:05
That sounds like it has.

Scott Benner 4:06
Oh God. We're gonna like spin down a rabbit hole.

Unknown Speaker 4:10
It sounds it sounds wrong to me.

Karen 4:14
I don't know what what the way New Jerseyans say water? It sounds like it's a U instead of an A?

Scott Benner 4:20
Yeah. I always think of it as being like, what like wott Hey, har water. Why not how you spell it? So you're saying? Wa is wha Hmm, I guess it is water. But that sounds really wrong.

Karen 4:40
Yeah. Sounds wrong on you. That's for sure.

Scott Benner 4:44
In my brain has to tell me to say it that way. Like I'm forcing myself to say it like that. It's very interesting. Okay, anyway. 1977 Well, you missed the Bicentennial by just a year. Isn't that a shame? You

Karen 4:55
know, I know. Well, I was not even married a year. Yeah. We were still newlyweds. And I was 22 at the time. And so I had seen my gynecologist because I just had a miscarriage. And so he sent me in for some blood tests. And it just popped up in a blood test. And he called me on the phone and said, Well, you have diabetes, so you should go see an internist. Right. So that was my introduction to my diagnosis over the phone, you know, just was kind of surprising. You know, of course, my mother is like, well, we don't have that in our family. So she had to go research all my father's family and give them a third degree. You know, it's like, I'm a mom, you know, this. It's an autoimmune disease, you have Hashimotos. So I don't think you should look any further than that.

Scott Benner 5:57
I've been married a long time here. And I know who to blame. Let me get your dad and his mom. I know, these people from Missouri.

Karen 6:06
That's right. You know,

Scott Benner 6:07
they're the ones. Well, isn't that interesting that well, first of all, it's interesting that you were diagnosed when I was five. And, and I'm looking at you right now. And I don't think we look any different niche. So I either You look terrific. Or I'm in trouble. I can't figure out what it is

Karen 6:24
really on this on this screen to look to read. So a lot of people think I'm, I'm younger than I am. Yeah, no kidding.

Scott Benner 6:31
I wonder why. It's because you hide inside from the winter problems.

Karen 6:35
No, no, no, it's because my mother never went gray until she was like, 85. You know, so I don't have too much gray hair. That's

Scott Benner 6:42
your that's your real color. So it looks natural on you. Yeah. Whereas and I don't want to add anybody but most women I see on the streets who are of a certain age are dying.

Karen 6:55
Yeah. And actually, somebody said to me one day, at the studio, they looked at me, and it was a friend of mine for a long time. And she goes, Oh, you don't even dye your hair. Because I have I have some gray strands coming through, you know, so it's like, finally I can prove I never dyed my hair. Because everybody assumes that I do my

Scott Benner 7:17
gray hair gray hairs fun. I yeah, I have a couple. And I think I have a couple of them. The other night artists like you know, there's a lot of gray in your hair. I was gonna say

Karen 7:25
you have to have a lot of gray. For what you have to have to deal with

Scott Benner 7:31
no idea. You really have no idea, man, I just say for younger people to get ready the worst gray hair. I can't believe I'm just gonna say this. It's in your nose if you get a gray hairs coarser and so it will grow through your nose like a sword and just reach to the other side and eventually just poke you and a prickly and when you're when you're you know, not accustomed that the first time it happens. You spend days gone like why is my nose itching and running? Something's wrong with me. And then you look in there. It's horrifying. Like, oh god, there's a gray hair in my nose and Oh god, it's a steel BB. It's growing through the other side of

Karen 8:14
my husband was very good about that stuff. You know, he's always watching for things he should be clipping out.

Scott Benner 8:21
I'm in there like a hedgehog. I gotta be honest with you. I was like, Get out. Get out. Everybody get out. Yeah, thank God, my ears. I think I would I saw. I saw a video online the other day where they waxed an older man's ear canal. And they really they put they put wax like into his ear put on and rip and it came out like a giant cotton ball. And I was like, more? More. I was mortified. Okay.

Unknown Speaker 8:49
7777 Yeah,

Scott Benner 8:52
and beef and pork.

Karen 8:55
Yes. He's started me on one injection of the day, believe it or not. And I've I've heard other people some other people say that that was what they started on to which, you know, now we know is totally ridiculous. You know, we were doing urine testing. So clinic test with a little test tube and, and all that, you know, and my blue and my orange, you know. And, interestingly enough, I weigh the same amount as I did when I was diagnosed back then. And he put me on the diet. Like I was a type two or something, you

Scott Benner 9:30
know, trying to keep you away from carbs, you think?

Karen 9:33
I don't know. But he said, you know, it seems to when I think think back on it now. I mean, that would be maybe standard protocol for someone with type two, you know, because a little bit of weight loss can make a big difference, but I mean, I'm, I'm 142 now and I'm a yoga teacher, you know, it's like I don't have a lot of fat, you know, I got muscles, you know and So I went on that for a couple of months and one shot a day, you know, and took off like 40 pounds in a hurry. So the doctor increased my, my calories to 1500 calories a day and I lost another 10 pounds. Well, you were

Unknown Speaker 10:22
90 pounds at some point.

Karen 10:24
I was 102. How tall are you? I'm 530. My good knife. Five, four. Yeah. Yeah. So he says, Well, I, I guess you couldn't handle the extra food. I'm thinking, well, how? Maybe you give me a little more insulin?

Unknown Speaker 10:41
Because it's possible

Scott Benner 10:42
your blood sugar is still very high. And you're losing weight because of that, right?

Karen 10:46
Absolutely. Absolutely had to be. Absolutely had to be. So he took me on, he put me on. Finally, multiple daily injections, beef, pork, insulin, NPH. And regular. And he thought I was doing great that I thought I found out later that I really wasn't, you know, because back then it was really hard to find any information. We didn't have the internet. We didn't have Google. And, you know, all we had was diabetes forecast magazine, which really didn't give you a lot of management information back then. You know, it was mostly about, you know, what celebrity has diabetes and what school kids are, you know, raising money for JDRF or something like that. And really nothing of much value in terms of management was there. Although I did find an ad one day for glucometer. So I took it upon myself to buy it as Oh, this has got to be better than what I'm doing. You know. So I started testing and for for the first time, I actually had information that I could work with. You know, it's not like, what my blood sugar might have been two hours ago from a clinic test, but now I can find out what it is right now.

Scott Benner 12:12
What what year, do you think that was current that you got it? That was?

Karen 12:16
That was probably maybe 1980?

Scott Benner 12:19
So you round that the other way for four years or more?

Karen 12:23
Yeah. And, and we'll find out what, what happened. Because of that, you know. So I go into the doctor on my next appointment, and I'm, I'm all jazzed up about this glucometer and everything, and I'm telling them about what my numbers are when I get up and just say he goes way, way way. He says, I don't know what the numbers mean, aren't you still testing your urine? And I go? No, this is so much better. You know, and it was like, a rude awakening for me that, you know, I was probably not in the right place, not in with the right doctor. So a little bit later on, I discovered a book that changed my life in a bookstore. And, you know, we still didn't have the internet and all that jazz. And it was called the diet, diabetics, self managed self care methods. And it was written by a husband and wife team of Intrapreneurs ologists, who also had type one diabetes. And it laid out, you know, here's finally all that information about what the a one C numbers mean, you know, what your, you know, what level you should be at to have the best results. And a program using a different insulin. That was what they termed as sort of the poor man's pump. And it involved Ultra lenti insulin and using that instead of NPH. And this is also the first time I had ever read in print. That mph may not last as long as advertised in everybody. And that was that ended up being a very important factor in my management. No,

Unknown Speaker 14:19
yeah. So

Karen 14:26
I started to implement what I could, but I still didn't have that ultra lenti insulin. So the next appointment that I went to with my internist, I asked what my a one C level was now knowing what they meant. And he told me and I was obviously profoundly disappointed. And he said, he says, Well, he thinks he's being, you know, consoling, good doctors as well. You know, sometimes it just can't be any better than that. And I was bullied. I Whereas both because I said, Look, I'm only 10 years in now, I have written apathy. I have neuropathy. You know, do I need to get kidney disease? Before I get this under control?

Scott Benner 15:15
Yeah, you make me think that there's so many, obviously processes that happened inside of your body that take a lifetime to come to an end, let's just think of aging, right? Like you don't see aging happen. And if you're lucky, you make it to, you know, a ripe old age and you dropped it. But that thing's been happening to you the entire time. We don't think of it that way. Not until you get something like hypothyroidism, or Hashimotos, or diabetes or something to that effect, where the whole process is sped up. And the the the the human inclination that things are going to change. And that's okay, because they're going to change slowly enough that I won't care by the time I'm in the can, right? Like, your brain doesn't switch when your situation fast forwards like it does. Right. So the doctor says something like, oh, it's the best you can do. Or don't worry, this is how it is. Except Except you're the one who's I mean, what are you 32 years old with reference to it the time yeah. 22 By the way, the diabetes self care method by Charles Peterson and Louise Jacque Giovanni Vic Peterson. First published in 1984. Yeah.

Karen 16:34
So is that well, so I didn't find it till later, I guess. Yeah.

Scott Benner 16:37
And the blurb is it teaches diabetics How to Achieve Self self help management for a freer, more balanced lifestyle and provides the most current information about insulin dosage adjustments, exercise therapy, glucose monitoring options, diabetes medications, and they should have just got a podcast, it's much easier. You don't have to write down all the words that Yeah.

Karen 17:03
Thinking back on that time, was like, in the meantime, I have become a runner, you know, and I can't even imagine how I managed to stay safe out there. You know, I would get up in the morning, I'd have like a glass of cran apple juice or something, not even, you know, full strength as low sugar and go out and run five miles, you know, and I'd ran 40 miles a week for a couple of years. And I think and I had you know, my little sugar packets in my in a plastic bag tucked in my waistband just in case. And I think I only once had one time when I was really sure I wasn't going to make it home. But that was like a 13 mile run. And I never did that again.

Scott Benner 17:57
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Karen 21:54
but, you know imagine all the chances that we took you know people in my age that were diagnosed when I was just because we didn't have the information we have now like the Dexcom. And you know, all that is just it boggles my mind to think because I don't want to be anywhere away from my phone to see my Dexcom now that I have it.

Scott Benner 22:17
You lived without Did you ever have a seizure? Oh, yeah, I've had seizures. Yeah. A number of them like more than you can recall.

Karen 22:26
My husband can recall. Yeah, probably. Well, more than five probably

Scott Benner 22:33
okay. You know, do you ever when you did he ever tell you? Where they were any worse than others? Like, did you ever think like I thought this was it?

Karen 22:43
Yeah. And actually, at one time, I told him I thought this was going to be an IME. And I remember thinking it was in the middle of the night, I had a really bad insulin reaction. And he's given me glucose. G voc and and I had been, you know, drinking juice and stuff. And and I remember thinking to myself as I laid myself down in the bedroom, is this. Is this the way I'm gonna go out? Really? Come on. It's like, after all this, you know,

Scott Benner 23:16
Karen, I have to I have to clarify something with you. Did this happen recently?

Karen 23:21
Actually, this did happen. We so you

Scott Benner 23:23
actually use G voc? Oh, I thought you were I thought you I thought the people who make Jeeva hypo Penn, we're just going to be thrilled that their product was being used artificially as glucagon in an old story, but this actually happened to you recently.

Karen 23:37
This was like a couple of months ago. Wow. Okay. Yeah. It was just like a ridiculous drop in the middle of the night. You know?

Scott Benner 23:45
That's the Dexcom catch it.

Karen 23:48
Oh, yes. That's why my husband, he goes to bed much later than me. And so he came up because his phone went off. What the hell's going on? You know? Don't ask me.

Scott Benner 24:03
He's like, I'm too old to meet another person and start over again. You either have to stay alive or I'm going with you. There's no in between here. Yeah.

Karen 24:12
And he's 10 years older than me. So

Scott Benner 24:15
he must appreciate that hypo pan then because it is easy to use, right? Oh, yeah.

Karen 24:19
So much better than then the box with the, you know, mixing everything together and all that jazz, you know, and the G folk the hypo pen, especially the one that isn't, you know, that's not the injections is the one I carry with me because many times, you know, at all conscious, I can still give it to myself. Yeah. You know, and this, you know, the teachers of the studio, if there's something going on. If they need to give it to me, it's very easy. You just tell him no, it's like a epi pen, you know? And

Unknown Speaker 24:54
would you call yourself hyper one aware?

Karen 24:57
You Oh, definitely. Yes. Absolute Luckily, yeah, that was another thing that came along with everything else, you know, but I'm very blessed that laser was available in the 90s. Otherwise, I probably wouldn't be able to see. And now they have the injections in the eyes that are even better than laser. And, you know, so it's, it's really been a blessing to live this long. You know? And, and you know, when you're everything you read back then is not very optimistic, you know about whether you're going to have children or how long you're gonna live. And you know,

Scott Benner 25:39
well, you probably had that first miscarriage because of you were probably, I mean, you were undiagnosed when you were pregnant. Right. So

Karen 25:47
right, that's right. Yeah. Wow. Yeah, I think the first one was that that they didn't think the other ones really had anything to do with it. Because it was later on. You had more than one. Yes, they did. We but we have other fertility problems between us. So there's a lot going on there anyway,

Unknown Speaker 26:05
did you end up having any kids? No,

Karen 26:08
we never did we have cats.

Scott Benner 26:11
Hey, look at that cat doesn't want to go to college.

Karen 26:13
Perfect. That's right. You know?

Scott Benner 26:17
I have a kid I trade for a cat. What do you think of that?

Karen 26:22
I have three cats. And we had goats. We had a lot of different things, you know, so we managed to fill in this space a little bit, maybe not the way we expected. But, you know, yeah, it's been a good life anyway.

Scott Benner 26:35
Well, it's interesting to hear you say it's been a good life. And at the same time, you're talking about first four years, not really being managed at all having to figure out what a glucometer was on your own have to teach your doctor what blood sugar readings, and then having to find a book to even figure out more things. You're just on the edge probably the whole time. Probably never using enough insulin and, and yet still getting low. Yeah. Yeah. That's fascinating. And yeah, what is

Karen 27:07
his crazy, you know? So anyway, after I told the doctor, you know, and he decided to send me to his and endocrinologist friend, who apparently was the one that he was getting, you know, if he had a question about me, he asked him and stuff. So he sent me to the Endo. And the endo was kind of, he's, he's sort I think, I came in, and he already had, like, a decision in his mind that I was, like, a problem patient or something like that. So, you know, he sort of treated me like, I was just being non compliant, you know. And I mean, nothing could be further from the truth. For the last 45 years, I have written down and weighed every single thing I eat, you know, or if I had packaged, you know, information, that was good. But I mean, I've been very vigilant about my diet and everything else that I did. So just, you know, I'm trying not to get too upset about it. And so I said, Well, I want to really want to try another insulin because I don't think MPH is lasting, you know, long enough in May. And it was just no, you know, just no. And so, being the stubborn person that I am, I went home, I started testing every two hours. And I kept very detailed records. And I sent them all to the dam. And so he, you know, so eventually, he ended up being my doctor. And you could really see from the test, the testing that I did that there was a big hole in my day where I wasn't being covered by anything, because the the NPH was just cranking out, you know, before whatever hours they they expected it to. So and as it turned out, insulin didn't need a prescription back then. So I decided to go to the drugstore, and I bought myself a vial of ultra lentil. And I started to implement the, the method that was in the book, right? So you take two shots of ultra lenti a day, 12 hours apart, whenever you want to, you know, make that 12 hours and then just like a pump beat, so that's like your Basal insulin, and then your you would just inject regular for when you're going to eat right, so I started I started doing that for a couple of months and I went back to my internist had an N A one C, and I asked him what it was. He goes It was 7.2. That was like, at least two whole points down because I'm sure it was in the nine. Yeah. You know? And he said, and I said, Well, I'm just so smart. You've got this. But did you do my sample? I went on insulin, that doctor, my other doctor specifically told me not to go on. Right. And

Scott Benner 30:30
don't worry, I read it in the book. It's good. Yeah.

Karen 30:34
That's the equivalent of off the internet now, you know? Yeah. And so, you know, he really couldn't, couldn't argue with that, you know? Sure. So we fast forward a little, a little time. And then he was decided he was going to move to California with his because his wife got a promotion. So he's gonna send me to his friend, permanently, right. And I said, Well, I don't know. Because, you know, I did. What do you exactly told me not to do? And he said, Well, it'll be fine. It'll be fine. So the first appointment with the Endo, the first thing he says to me is, well, I guess, mph just doesn't last very long for you. So which is what I went in with the first time to tell him Yeah, and after that. All right, our relationship just absolutely blossomed. He was such a blessing in my life after that, you know, there was never an appointment that I went to, that he didn't tell me something new he discovered or something he'd heard about at a conference or something. And he would tell me, since I tell other doctors about you, you know, he says, You're like my star patient. Really, you know, look where it started, you know, we became very, very close after that. And I was I was just torn apart when he retired, you know, and, and he's passed away now. But he's, he made such a difference in my life. And he was the one that got me on a pump. Fine. And it was, you know, if so, it's a relationship that certainly went full circle, you know, from what being on the outs with them.

Scott Benner 32:15
Yeah, you had a process happen within a process. So what I'm seeing Yeah, I mean,

Unknown Speaker 32:20
I think, I think that you don't,

Scott Benner 32:23
no one really considers, excuse me, I'm having a bad week from my throat. I, no one really considers that we don't really know very much about the human body, and how to just magically fix things like we I mean, the stuff we know, is amazing. And it's of course, you know, leaps and bounds above 1000 years ago, 500 years ago, 100 years ago. But you were, you were caught in that process that you were, you were diagnosed at a time where the doctor, let's be honest, was thinking, Oh, she'll be dead by the time she's, and he had a number already. Yeah. I'll just try to keep this lady's life as nice as possible. Until this kills her, which it's going to do is what he was thinking, you're not thinking that because you're thinking, I want to stay alive. And, you know, how do I be healthy. And you also have that expectation, I realized in every generation of people I talked to in every decade of people, everyone imagines that what exists, is more magical than what it really is, or that it's more immediate, or how we want healthcare to be like, I take a pill, and then I'm better. Or I take a nap. And when I wake up, I feel better. Like everyone wants that. It takes you a while to realize that we're just, we're just in a star map size, race, with discovery about medicine. And we're really very early on in it. I think it's amazing to listen to you talk about the process that you went through. And it's likely a testament to your stubbornness and desire to be okay, and willingness to I didn't want to say reach out God, I don't want to say think outside of the box was the only thing in my head. But

Karen 34:13
you you'd ever say that to a woman?

Unknown Speaker 34:16
No, we shouldn't your ability

Scott Benner 34:17
to look at like, well, this is what this is, what the standard idea is. But let's look on the fringes of that and see what else exists.

Karen 34:26
Yeah, because everybody think I know as a yoga teacher, and we tell this to our students all the time, you know, your body is everybody's body is different. And your own body is different every single day, you know, so there is no we can't boil it all down to being mechanical organism. You know, it's like it's not and sometimes, you know, we we tend to go towards the health is more a measure of balance of a bunch of things rather than taking a pill and you're gonna be better. You know, maybe you need to balance out some other things in your life that are affecting this, uh, you don't realize, you know,

Unknown Speaker 35:10
I think of health. The way I think of

Scott Benner 35:13
my brother's behavior when we were children, my youngest brother Rob, I don't know if I've ever shouted him out before, but there were two states of Rob, Rob was either in trouble. And you could see it, or he was getting in trouble, and you hadn't found out about it yet. And I think that way about health, like, you know, you look around and you think, Well, you know, my family has autoimmune issues. Nobody else has these troubles. Like, you know, look, there's people walking around the grocery store, they don't worry about this. And the truth is, I think everyone to some degree is, is dealing with something, they're worried about something Yeah, some things are more obvious or more immediate or emergent, maybe, but the amount of people who look up and they're like, I'm 85, and nothing ever went wrong, this doesn't really happen. You know, that's not how it goes, and maybe you're not going to have and I still think you're going to have troubles. It's whether or not those troubles are impactful enough, that they change your life enough that you pay attention to them, I think is how I I'm coming to think of it as I'm trying to stand back. I don't know anybody that doesn't have something. Right. You know,

Karen 36:26
everybody has something, you know, so, people, you know, I remember, you know, back back when I was diagnosed, you know, there was always a saying about the women who, you know, were a little sickly, you know, or whatever, in a relationship, you know, it's like, it was like, Don't ever think of me as being sick. You know, I because I'm going to do a lot of things. And I did I mean, I was, my husband used to call me his prairie woman, because we, we burn wood to heat our house, and I split with wood with them all. You know, I'm out there for four hours in the summertime when I was off from work, and I'm splitting firewood, you know?

Unknown Speaker 37:10
Yeah. 100. Yeah. I don't think I wouldn't want

Scott Benner 37:14
anybody to think of anybody is like sickly. But you do look back at that time and realize that. I mean, just think about what we know. Now that probably we didn't know before, like, women could be tired all the time. And no one no one ever thought like, well, what if your periods heavy and your iron slow? Like, right, like, right, they would tell you what, eat a piece of liver? Will? That'll help my 1314? Should I eat a piece of liver that should just fix it? Right? We're taking these iron tablets that then cause incredible constipation. So you can't you can't take them anyway. And nausea. Or, you know, you know, you know, Patti up the street. She's, you know, how she is like, what does that mean? Exactly? Like, what does it mean? Yeah, what is it means her hormones are all over the place. And you're just calling her nasty? Like, right? Like, it's not something she can, can do something about and hormonal imbalances are still not something that we particularly understand how to impact very well. Sorry.

Karen 38:14
But you notice, like, a lot of those things were always centered around women of color, you know, you know, it's like, the little woman or whatever, you know, it's like I died, you know, my mother in law. God rest her soul. She and she was an absolute saint. But Schuster, after I was diagnosed, you should always go, Well, you shouldn't rest here. You should. Like, you know, no, I need to have activity to balance out when a meeting, right? Like you don't understand how this works.

Scott Benner 38:42
She wants you to be Scarlett O'Hara, right? Yes. Oh, I'm, I've got the vapors. Let me sit down. Even what does that even mean?

Karen 38:50
Somebody make me a drapery dress.

Unknown Speaker 38:53
And that's really only

Scott Benner 38:55
that's really only you know, what, 70 100 years ago were like, you know, oh, they have the vapors, let them sit down or she's hysterical. Like that was a real diagnosis.

Karen 39:08
Right? Well, you still hear that today? Sometimes. You know,

Scott Benner 39:11
it's amazing. To me. It's

Unknown Speaker 39:13
amazing. Now men,

Scott Benner 39:14
you know, you know if we're if we're if we act crazy. I don't know. Everybody just seems to be like, that's fine. I don't understand at all. You know, it's

Karen 39:26
not good. You're entitled to do that. Apparently,

Scott Benner 39:29
I'm allowed to feel any way I want your history is what

Karen 39:32
I've learned. That's right. Your historical Yeah. Well, so

Unknown Speaker 39:35
yeah, it just,

Scott Benner 39:36
I mean, listen, Modern medicine has saved everybody. It's been on this podcast. It's good saving people I love it's helping me I just had again after thinking it wasn't going to be a problem anymore. I just realized a few weeks ago that my iron got low again. Again. Yeah. And so I I was just like, I gotten bitten by something. I like a little bump on my hand. And it kind of started to get systematic. It spread around my hand a little bit. It kind of left in my other hand, I was like, What is going on? And I was I started getting really tired in the afternoon, I thought what bit me that I'm falling asleep at two o'clock like that. Oh, odd. And so I thought, Oh, it'll go away. Yeah, and I went to I went to urgent care, and they jacked me up with a steroid pack. So for 10 days, I felt like Superman, because I don't know what's in those steroid packs. But I was like, Yeah, everything's okay. And it solved the problem. Soon as the steroid pack tapered off, the bumps on my hands would go away, but I was still tired.

Karen 40:38
Oh, and you have to go back to the hospital for infusion. I

Scott Benner 40:41
just got my second infusion yesterday. Yeah, so I had one a week ago, and I had one yesterday, and I already feel a million times better. But then I started going back and looking over the past month or so before I felt tired. And we found ourselves, I'll probably be able to talk about this at some point in the podcast. But for now, we found ourselves in a doctor's office where Artin needed to be seen by a new doctor. And they made the appointment, we set it up, we got there filled out all the paperwork waited. And then they called me over to the to the table and they say, Hey, she's not 18. And I said, yeah, no. And they're like, we don't see people under 18 here. And I said, when I called I said to the I said to the person on the phone, I'm calling from my daughter, because she's a minor. And then they set all this up, then she's Yeah, we're really sorry. Well, Arden was having a real problem. And anytime, like she needed to be seen, so we could figure something out. So we could make an adjustment for something. And they said, Well, we can see her after she's 18, which was like six weeks later. And I said, well, she's going to be in pain every day for six weeks while you're figuring while you're waiting for it to be a team. And something happened inside of me. And I was unreasonable for the next five minutes in that doctor's office, like I pushed, and I was, I was combative. And I did not accept one of their answers, even after I realized, these people are powerless in this situation. Like, there's not a decision maker here. Like I really pushed back to the point where we got outside and Arden was like, I was not comfortable with that. And I'm like, what? And like, I just thought I was defending her.

Karen 42:21
You were Papa Bear.

Scott Benner 42:22
You know, what I was? Was I was in that situation with a low iron. Yeah. So we found ourselves back there two days ago. And the first thing I said to them was, hey, look, I'm really very sorry, I'm still pissed that you set up this appointment, when she wasn't 18 and then said, Oh, we can't do this. But my reaction was not anywhere near what it would have been if my iron wasn't low. And so I see that and then I think about people with thyroid issues. And are they okay, are their thyroids handled? Well, people with their blood sugars, are they okay? And, and then that's just the stuff you can see outwardly, what about right? People who are going to find out their eyes are going to go crazy. 10 years from now? And yeah, etc. So, anyway, you, you I'm sorry, talking for like, a half an hour? Oh, that's fine, longer, but you, you really did want to come on to talk about, like advocating for yourself?

Karen 43:18
Exactly. You know, because I, you still see, I'm one of the podcast followers, and I'm in the Facebook group, and you still see people saying, well, you know, there's something wrong and, and, you know, we don't see the endo for three months, you know, and I wouldn't be here. If, if I didn't advocate for myself, if I didn't, you know, if I wasn't brave enough to take a step. You know, it's like, I really didn't have a lot to lose, but, you know, and I would say to those, those people, and I know, you know, most of them are parents, and it's, it's scarier when it's someone else other than yourself. But even if it's, if you think something needs to be changed, you don't have to make a big change, you can start small and see if it has some has some benefit, you know, so you know, you're not going to like, switch to a whole nother insulin like I did or something like that. But, you know, if you if you can see that there's something happening. You know, don't, don't wait for somebody else to tell you and give you permission, that it's okay to try something different. You know, I mean, you can make small steps that aren't going to be risky. And then see where see where you go. And if it works, then you could go a little farther, you know, and by the time you get to the end domains, you won't need them. By the time you get to the end knows and you can you know, really work it out in detail because

Unknown Speaker 44:54
you might be

Scott Benner 44:55
being told something by a person like going all the way back to your diagnosis is just like go, wow, I didn't know what those numbers meant, like that person was telling you what to do for four years. Isn't that unbelievable? No, it's not. I wish it was Karen. But it is. I mean, even this thing with Arden, which I'll have to talk around from him, because it doesn't have a resolution yet, and I don't want to have tell a story. But we had to track down to different doctors on our own, that were more integrative outside of the box thinking, to go through a host of things and check them off go. It's not that it's not that it's not that it's not that to get down to it's probably this. And this is probably impacting this other thing. So now we think we have one problem that's feeding a different problem. And we needed a test to check on the secondary problem. Now, this person, not an outside of the box thinker, we just needed them to do the thing. They did the thing, we got the information we needed. But if I would have left there with what that doctor said, then the answer would have been, hey, this is bad luck. And here's some medication. And this is gonna be your whole life. But now taking the information that we got from this from the first doctor, we see how the thing that she found is probably causing the thing. The second thing. And so if we fix the first thing, it should fix the second thing. But a regular old doctor, they don't think that way. They know he knows the thing he does, it's, I mean, it's like it's like having a guy come out and put a fence up around your property. And while he's there, ask him about the plumbing. Yeah, he just doesn't know. He can put the fence in, he'll do a great job with the fence, you need a fence or he's a fencer. Beautiful fence. This doctor was great at what he did. He was lovely. He was helpful. He was extraordinary what he did, but then to ask him what to do with the information you should take, you should take a pill. That was all. So you just learned to live with it. It's going to be bad. Take a pill, the other person was like, I think if we do this, this and this, it'll clear that up. I mean, fascinating. So So I kept thinking and I said to I mean, I've been talking to Jenny about I've been talking to my wife about it privately. What do most people do in these situations?

Karen 47:17
Unfortunately, they do just what the doctor says. They don't even they don't think beyond that. You know, but I

Scott Benner 47:23
chose to do that though. Because I'm sure a doctor said something to me in my life that if I just listened to I be okay. How do I know the difference between and you know the difference? Because your outcomes, except what if your outcomes are happening so slowly, you can't see them as you degrade. Like me yelling at a doctor because my iron is low. I didn't know my arm was low that day. I had no idea. It took me six more weeks, I actually think had the bug not bit me. My iron. I was like teetering. But something about getting sick, crashed me the rest of the way. And then I could recognize the symptom. Yeah. And then my wife said to me, I told you, you were being bitchy like three weeks ago, and you didn't listen to?

Karen 48:02
I was like, yeah, sorry. And we know what bitchie sounds like.

Scott Benner 48:06
You don't know what it sounds like from me, you think of me is like the nice guy on the podcast?

Karen 48:12
Yeah. Well, the thing is, is that, you know, people have this I don't know what the word is complex about doctors, the god complex about doctors, you know, like they, they're the be all end all they know what they're doing. But the fact of the matter is, you know your body better than anybody else does. And you have to be your own doctor every day of the diabetes. You know, so

Scott Benner 48:45
we you have to be involved Karen in no matter what it is, I'm telling you last week, my son has a little car that we we set him up with to go to college is a lease, I'm telling you, if it cost me six grand to lease this car for three years, do you know what I mean? Like it was yeah, it was just a little car, and the lease ends. And because of the state of everything right now, finding other cars was like difficult. So we said, Well, why don't we just buy this car. And so I had to go to the dealership where we leased it from and I said, Look, we're just going to like get a loan and buy it. I don't think I'm going to keep it very long. So I was like, I'm just gonna do this. And it was that amount of money it was for it was 14,000 $14,000 on the car. It's what it was going to cost to buy the car. And we go in to sign the paperwork for the loan. And the guy just we walk in, he starts chatting us up and everything and you're just talking and we're going along and he says something about so you're going to get the loan you're getting GAP insurance, you're getting this he said a bunch of things. And I remember thinking at first thing, what do I need GAP insurance for? I was like, first of all with the state of the world. The car costs 14 grand it's worth $24,000 Because nobody can lay their hands on cars. I could literally sell it today for $24,000 If I wanted to I'm like, why don't I need GAP insurance? That's like a thing for, like, that's an old timey thing for at least. And I thought, well, if it comes with it, who cares? You don't I mean, and then we're going along and blah, blah, blah. And a minute later, he

Unknown Speaker 50:10
turned the paperwork around, assign it. And I looked down, and I was like, wait, I'm like, Stop, like, How much money are we financing? And he goes, and he looks at it, and he says, $22,000, and I was what, I only owe 14 grand on the cars, like what is happening right now. And he starts telling me how the GAP Insurance is $4,000. And the, and the other thing that he mentioned was $2,000. And this was the and I went, Whoa, man. Do I have to get the GAP Insurance is no, you don't want it? And I went, No. And he goes, okay. And he looked, he looked at me, like, caught me. And I was five sec, because I just like it was a simple thing with me. You know what I mean? Like 14 grands a lot of money. But it's not when you're buying a car and you're stretching it out over 1000 years. It's a couple 100 bucks, you know, and so I'm like, just trying to get this done brutally hot day outside. I just want to go home. And had I not stopped and just look through it. I almost signed paperwork where I was just basically financing me giving the car dealership, seven grand. Wow. And I tell you that because I think that's the same thing that happens to people in doctors offices. I think you just go okay, what, okay, okay, okay. Okay. And then you don't ever stop and think about like, well, is this right? Like, is this going to fix my problem? Or if they say something you don't know about? Like, I gotta go take some time to research this. Let's find out what it was. So like, I actually have to find out. Is this what they said it was?

Scott Benner 51:47
Why are they given me this pill? What does he really know, etc. And listen, as I say that, it's a lot. And it's a pressure. And I wish I didn't live with it. And I know why some people just put their head down and sign the papers. Because there are days, I don't know how, like, we left that doctor's office yesterday. And, and I had a moment where I was like, Oh, God, like, this is so much like this is always happening. You know what I mean? Like I just, but what's the alternative? And the alternative is we pretend that that pill was the answer. And we let Arden live in, you know, some sort of pain for the rest of her life. And I'm like, I'm not, I'm not doing that. And so I told her afterwards, because she looked jected and I said, Arden, we're gonna figure this out, or I am going to die trying. I was like, I am not going to stop just so you know, I'm like, we are going to get this straight. And I don't even think she believes that at this point. But there is going to be a day where we get it all balanced out. And and I'm going to feel accomplished. I don't know how to I can't put that on my resume, I guess but it's going to feel like a big part of my life's accomplishments.

Karen 53:00
For Kim, she's she's been through so much fibroid and everything else. You guys

Scott Benner 53:05
all have been through so much. So it's not her

Karen 53:08
now I'm now I'm trying to get somebody to believe me about thyroid because my PCP you know, is one of those well, your, your test results are normal, you know, and actually, the new endo said the same thing to me. But I did advocate and get I said, look, it's not gonna hurt me to try since or I you know, I said, But I'm, I'm exhausted all the time. I'm gaining weight for no reason. I mean, I worked my brains out, you know, and, you know, you know, my nails are

Unknown Speaker 53:43
just what was the TSH they said was okay. It was

Karen 53:47
it was one point something I don't know. It wasn't it wasn't very high. Yeah. But I I still had all those symptoms, because well, it could be something else. Let's find out what what else it is because I can't live like this.

Scott Benner 54:01
Yeah, well, there's also there's also things right, there's other things that could impact that number and make it look lower than it is I can't off the top of my head. I'm not thinking of it right now. And if it's not that, did you have your iron tested?

Karen 54:15
Yeah, my iron is is low too. So she's got me on iron. But yeah, because I don't eat red. I don't eat red meat. Right. You know, but I I eat all the other things that have iron in it too. How do you know I know I cannot chop my head. You should for it to say low.

Scott Benner 54:35
I'll tell you right now the the infusions if your insurance will cover them, they are about the closest I've come to magical in my entire life. So I like I drugged myself to that first one. Like I was like, I sat down like the girls like I can't find them. And I'm like I said, or here's what I said. I don't care, cut my arm open and dump it in the cut. I said, I said shove the bag up my ass if you have to. I don't care how you get there. Same there was like, just do it, you know? And so she puts it in. And it's not an immediate thing. It's not like you're not like, wow. But in five hours or so my body started functioning better. So I was, I started to retain water. Yeah. So once the iron infusion was then I started paying regularly, which I was like, Oh, great, this is good, thank you. And then slowly over a week, my tiredness that used to be I was getting to the point where no matter how late I slept, I was tired by one o'clock. That's where it got to. And then I couldn't walk up and down the stairs anymore, because I'd get out of breath. And so like, all that stuff is slowly getting better. But what you're really waiting for, now that all that iron or whatever the hell's in that bag, I honestly don't care what it is, it looks like rusty water, and I wouldn't drank it if they told me to. And once it gets in there, and your body remakes, the cells, it rebuilds, when it makes your next round of red blood cells, it makes it with the proper amount of iron, and then, and then the cells can hold the oxygen properly, and then you're not tired, and then you can run up and down the stairs again, and

Karen 56:08
stuff. So the biggest, most noticeable symptom that I had, and I still have is I've had marking loss of strength in my arms. And, you know, so they sent me to a neurologist, you know, because they thought, Well, maybe it's neuropathy related, you know, and all that jazz. So, there was nothing there. I mean, they did all kinds of tests on it, and it had nothing to do with neuropathy. But, you know, still, I'm not as I'm a little bit stronger than I had been. But I still haven't gained all the strength back, which is a little disconcerting to me, you know,

Scott Benner 56:44
you need to get down with that infusion. Because I tried to get a bucket of balls out of a trunk. The other day I looked at my son was like, You're gonna have to get that, like, get in that class ridiculous. And now, two weeks later, but that's okay. Again, like we there was a moment where my son and I were throwing, and I had to I said, I said, we got to stop. And he said, why I said, my arms not moving as quickly as my brain wants it to to catch the ball. And there's like a, you were throwing at me way too hard for me to miss the ball. So like, like, like, I doors a day where I was like, I can't do this. And you know, and now we did it again yesterday, and I felt much better. But we were, we were at a point where if I took like, a three or four quick steps, I was like standing out there going. Like, I couldn't catch my breath. And just with that infusion, it just starts to go away. It's really something else.

Karen 57:33
Do they have any idea? What causes the lack of iron in your care system?

Scott Benner 57:39
I so I don't know if it's not being absorbed if I'm not eating well, and it's a slow drift away? Or if God Karen, you're gonna make me say something I've never said on the podcast before.

Unknown Speaker 57:51
I don't know if I want to say this. It could be first, how God can. Go ahead.

Scott Benner 58:00
Go ahead. Listen, you don't know how many people we're talking to. I'm the only one who knows how many people are gonna hear this. Okay. So

Karen 58:09
I have a good idea. Because I listen to every single one. It could

Scott Benner 58:13
be from like a hemorrhoid. I could be I could be losing blood that way. Because I go through bouts with with one. And so I'm thinking about doing trying to do something about it. But I've done in the past. And the old methods didn't work very well, and were unpleasant. And it's not. It's not constant. It's just sort of like it'll happen. And then it takes a few days to get it under control. And then you know, it. I don't know, maybe it happens more frequently than I recall. And maybe between that, and I don't know, I do have Berets. So I don't know if I'm absorbing things exactly, as well as I should be. Anyway, I got away from taking my iron supplement, because I felt so good. And I was like I'm doing great. And then I think it drifted down. And then your body function just kind of like everything gets washed wacky. So like, nothing starts working the way I expect it to. And then it snowballs. So it's like every other health issue, honestly,

Karen 59:11
when one of our relatives actually had to have an operation for him. Right. Yeah, you know, and it helped him a lot. You know, I don't know exactly what they do. You know,

Scott Benner 59:23
well, I saw an ad for the other day where they're like, We that it's like done differently now. And I was like, it was at a gastro that I trusted and I thought like, am I gonna call them? I guess I am. Because I don't want to yell at another lady. I'm yelling at a woman in June because I bled and like, I don't know April, you know, maybe like it seems unfair. But But uh, but I I will look into it one more time. I did try it when I was younger and all I can tell you was it was incredibly unpleasant and did not do much and yeah, yeah. So I'm just saying, I, what am I trying to say, Karen. I tried to say 15 years ago, I saw someone coming at me with a speculum, and I was like, Wait a minute. I don't think we should be doing this. But we did it anyway. And then about halfway home, I drove dry. Oh my god, this was 20 years ago. Coal was like, coal was little, he was two or three years old. And I was a stay at home dad. So I did it in the middle of the day, because I didn't think much of it. And boy, this episode took a turn. And then so I'm driving. So I'm driving home. And it's only a 15 minute ride. And halfway through the ride, I pulled over on the side of the road and just leaned over sideways in the car, because I could not sit down anymore. I was like, I'm like, I'm gonna cry in front of this kid. And I don't know how to get him home even like it was Yeah, so I finally what did I do? I think I took some sweatshirts or something and like, put them under my thighs, and like jammed my back up into the back of the seat and I basically hovered.

Karen 1:01:08
And why didn't they give you a donut pillow? Okay, and

Scott Benner 1:01:11
you're asking good questions. They told me it wasn't gonna hurt. And so either either I'm a big baby, or, you know, they never had it. So we got a we got home. And he was little I was like, Hey, buddy, I'm like, you just play here in the living room hang out with me. I'm gonna just lay on my guy called Kelly. She used to work in the city. And I was like, come home as quickly as you can.

Karen 1:01:36
So please come along, was the recovery

Scott Benner 1:01:40
wasn't bad after that. Like it was, you know, a day or two later, everything was okay. Again, even that, like no instruction about how to eat like, you

would think somebody might say, hey, like, why don't you stick with a liquid diet or soft foods or something like that? It was all just like, and it was only it was only 20 years ago? Yeah. I

mean, I'm just saying when you're asking people to know about your insulin, just remember. Yeah. It's not like I have 1000 hemorrhoids. It's one and they can't they can't bear it out. Nobody knows anything. Those doctors are laughing somewhere on their vacations.

Karen 1:02:14
Yeah. I don't know what what's causing my low wire, particularly because you know, I eat plenty of chicken and spinach and all that jazz. I don't think whether or not I include meet twice a week should make that much of a difference, you know? Because I plenty of everything else. But

Scott Benner 1:02:35
well, I mean, since Listen, since you made me say him right out loud. You know, you're screwed. I'm gonna ask you questions. So you must be through menopause, right? Oh, god. Yeah.

Karen 1:02:49
Yeah. I'll be 68 in November. I

Scott Benner 1:02:52
was gonna say I did the math earlier my head year. 67. So, but, I mean, it could have just be a lifetime of having periods. And then getting older and but you're you've you're saying you've had enough time to rebound?

Karen 1:03:06
Yeah, I've been Yeah, I've been past menopause for a long time. So you know, probably 12 years. You know, past past menopause. So

Unknown Speaker 1:03:15
is your b 12. Low to do they look at B 12 and magnesium.

Karen 1:03:22
I'm not I'm not sure. Yeah, those would be that'd be an avenue to check. Yeah, cuz

Scott Benner 1:03:27
absorption maybe. I mean, you know, I think people with autoimmune all live with more than their fair share of of inflammation, right? And inflammation happens everywhere. Maybe you're not absorbing the vitamins well anymore. Like who knows? Right? Oh, no, look at this mess. And once you get out of it, really.

Karen 1:03:48
But it's it's it's iron pills are really hard to take. Yeah, it's like I I tend to search around for a whole bunch of different ones before I find one that didn't make me nauseous all day. You know, it ended up being a plant based protein. Iron, so

Scott Benner 1:04:07
I don't know if it's plant based but Thorne makes really good supplements the comp Yeah. And I if I would have just I think if I would have just continued to take them away and I was only taking them like three times a week. But I was pairing it with an absorb ik acid and the iron tablet very easy on my system. I don't have any trouble with that. And I was doing okay. As a matter of fact, I had to cut down because I had been taking it more frequently and I got one follow up blood testing guys like Yo, man, your iron is way too high. And I was like cool. I figured this out. And then I had it back a little bit and then I got I don't want to call it lazy I think I just forgot. I think it stopped being a problem in my life and they just say stop take stop taking him and not on purpose. Not on purpose either. I just stopped taking them.

Karen 1:04:50
It wasn't in the front of your mind anymore.

Scott Benner 1:04:52
Yeah, yeah. Yeah, it was in the back.

God,

Karen 1:05:00
speaking of that, I could not be more grateful for cologuard Oh, God,

Scott Benner 1:05:08
well, even when my iron is really good, I don't have to take fiber. Yeah, I even noticed that I didn't realize like one of the things that bounced back quickly after the infusion, besides, I started urinating, like properly again, like, I wasn't retaining water was that my, my entire digestive system just started to work better? About five or six days into it? Yeah. And

Karen 1:05:31
because I have to take a lot of fiber because my, my digestion is fairly slow. Okay, you know, so if I, I take a lot of fiber, and it helps you get a tremendous amount

Unknown Speaker 1:05:42
to get a pain up high. From slow digestion?

Karen 1:05:47
No, no, no, it just takes, you know, to go through.

Scott Benner 1:05:52
Does that have you using more insulin? Do you think? Because it's so the food that's sitting in your stomach? It's just getting into your intestines and then not counting the rest of the Yeah, gotcha. It has.

Karen 1:06:05
I've seen it on on camera. So it's, it's shaped in kind of an interesting pattern. So I can see why it would take a little time for it to get out. But you know, I can't do colonoscopies anymore. They're just I don't get cleaned out enough for them to be too horrible. Oh, no kidding. Yeah. And the last time I had I had to prepare for when I passed out, and I fell backwards. We have a brick wall in our house. And I fell backwards against the brick wall. And I ended up with seven staples in my skull and a concussion. I said, I'm not doing that anymore. You can just give me cologuard.

Unknown Speaker 1:06:49
Can What did you mean? What do you mean, you're passed out?

Karen 1:06:51
I just don't know if it was just from the stuff you have to drink, or whatever it is. And I was on like a to a two day prep because I'm so slow of digestion. And I just, I just fainted twice that morning, once against the doorway, and then I fainted backwards and my husband's getting ready to take me to come down the bathroom. And there I am on the floor bleeding. No think we're getting there today.

Scott Benner 1:07:20
I've only had one of those so far. And I mean, as I drank that stuff, Kelly just like she sat across the room like half and heart and half laughing at me. And I just was like, I'll bleep it out. But I was like, fuck this. This tasted so bad. And I was like, trying to force it in.

Karen 1:07:39
And I'm like, oh, yeah, you have to use a straw. Use a straw. It's not as bad you get it down without noticing.

Scott Benner 1:07:47
You sound like me on a date when I was 18 There are ways to make this better for you. There's no good way to drink that stuff is terrible. No really was

Karen 1:08:01
in the darkness would never believe me when I said no, I drank the whole damn thing. You know.

Scott Benner 1:08:06
I'm still you didn't have the experience afterwards. Which by the way

Karen 1:08:10
is Yeah. Oh, I've had it before, but not recently.

Scott Benner 1:08:14
Yeah, I remember after living through the six or eight hours and then go into bed after I took it. I woke up in the morning and I was like, Well, the one thing I know for certain I won't have to do is use the bathroom like Yeah. And so we get there to the to the room and I get right up there put me on the gurney and she goes should just go to the bathroom one time and I was like, Lady listen. It's over. There's nothing inside. She was just try. And I was like, Okay, it's like I have no urge. She goes, you wouldn't have an urge. She was just try and I was like, Okay, I went in like came back. I was like, Oh my God, how did you know?

Karen 1:08:48
She was I've been blocked

Scott Benner 1:08:51
is my job. Trust me. And I was like, Wow, that's crazy. And then an hour later, I was saying inappropriate things coming out of anesthesia. So it was perfect. Yeah.

Karen 1:08:59
All right. Well, the anesthesia is the best part of that.

Scott Benner 1:09:03
I really do like that. The Jackson juice. It's nice. Yeah. And I feel bad. He's dead and off. But I mean, I don't know. Are we supposed to feel bad that Michael Jackson said I forget. I'm not sure anymore where we're culture stands on that stands. Yeah. But But I'll tell you what, man it it just turns your lights out is really something you wake up like you're almost reset. You know, like the next two days after like, I'm just like, I feel a mixing

Karen 1:09:35
yourself up a little

Scott Benner 1:09:36
that I ended up telling people like this is gotta be why Michael Jackson was doing that. So it's like it really? It's unreal. Anyway, don't don't don't do that. I mean, I don't know if any of us have enough money to pay an anesthesiologist to come over to the house every day. Probably don't. I ended up in jail, didn't he? Karen? Yeah, I think so. Turns out you can't do that. Yeah, kudu turns out you can't kill Michael Jack. Some that's gonna put you in jail,

Karen 1:10:02
can't kill a celebrity and not go to jail.

Scott Benner 1:10:05
Kill regular people. Yeah, just not people against saying that. That's it.

Karen 1:10:09
I think he, I think he probably wasn't really in his right mind at that point anyway. I mean, Michael Jackson Yeah.

Scott Benner 1:10:15
Well, I think what we talked about today was like, I think we I feel like we talked about the sin of complacency. Just not of just saying this is okay. This is good enough.

Karen 1:10:30
I mean, it's your life, you know? You have to direct it. Yeah.

Scott Benner 1:10:35
Yeah, that's, it's very true. And if you can't make sense of what you're seeing, I always say follow your gut, right? Like, if what's happening doesn't make sense, or it's not resolving correctly. And you can't make better sense of it for yourself, that's when you have to go find other people to help you. Right? You just don't go asking like, you know, go find someone else. What am I trying to say? Like, don't find other people who are on your level, right? Like, right, like I do, I do the very same thing, I figured out as much as I can. And stuff I can't figure out, I find somebody who knows more about than I do, and I go talk to them.

Karen 1:11:14
You know, people are always making fun of, you know, Google and all that stuff. But one thing I will say about the internet is, even if it everything on there isn't necessarily applying to you, at least you have the ability to ask the right question. After you have some information here, and it may not apply to you. And it may be it does. But it really can help you zero down on what you need to be spending your time at the doctor's office discussing.

Scott Benner 1:11:46
It's not easy. I'm not gonna say it's actually very frustrating. And you could, I mean, look at you, you're having trouble getting somebody to help you with being exhausted, right? Like that shouldn't that shouldn't be a heavy lift for you to get figured out. And yet you're, you're always going to end up in the situation that we were in where the doctor is like, look, this is what I do. This, I'm not thinking about this any farther than this. I saw x I saw y. So Z, and I'm telling you right now it's this and it's that pill and that's it and I don't I'm out, like I'm not gonna sit down and Dr. House this with you, this is not do. So you do have to, sometimes you have to come up with an answer, like you did with the meter that is so concrete, that when it's held in front of somebody, it's undeniable. And they have to go Hmm, okay, well, maybe you do need an iron infusion. Or maybe we should look at your thyroid closer or, you know, let's try this. Because I mean, the alternative, like in the case of your of your situation currently, like maybe maybe you don't need Synthroid, but it would really only take a week to find out. Right, you know,

Karen 1:12:53
right. And they have me on a low level of it right now. And it has helped me some. So I know it's working. In the beginning, it didn't really seem to be doing anything in the darkness, as we'll see. And as I swab, what am I supposed to be taking it and I was not taking it by itself. I was taking it with my breakfast, you know, so now take it in the middle of the night now. Because I'm not waiting for my coffee. I'm telling you that I

Scott Benner 1:13:22
have a great I have a great episode about it. If you haven't heard it.

Karen 1:13:26
I'm sure I'm sure I must. Many I've missed

Scott Benner 1:13:31
so we're gonna we're gonna button up here and get done because we've been talking for a while but and I actually have to go are you heading off to college soon? And she tells me she needs a computer. So I'm gonna go spend a bunch of money today.

Karen 1:13:42
Yeah, I saw the picture of her. You posted the other day. What a beautiful girl. Oh,

Scott Benner 1:13:46
thank you. I made it. I made her myself. Kelly had nothing to do with it. Really?

Karen 1:13:52
What was she? What was she dressed up?

Scott Benner 1:13:54
That was her senior prom? Yeah, she looked really great. She did. That was an interest. She

Karen 1:13:59
really did. She looks absolutely stunning.

Scott Benner 1:14:01
She's got that kind of. She's pretty in a different way. I don't know if that makes sense or not. But she doesn't. Like she doesn't look like many people that you know.

Karen 1:14:13
She happy that you didn't just only post pictures of her when she was little.

Scott Benner 1:14:18
Um, like I said, I'm gonna wish you a happy birthday online. I'm going to use this photo of when you were a little and you can tell me which other picture to use. She's like.

Karen 1:14:28
So she's good choice.

Scott Benner 1:14:30
She was happy with it. She actually went through and read everybody's wishes. And there were hundreds of them too. And she spent that she sat down very like kind of like nicely and, and she said thank you. I'll make sure you thank everybody. And I was like, okay, she's like, because I'm not going to like I know you're not going to go on Facebook and thank hundreds of people. I was like, I'll take care of it. Don't worry.

Karen 1:14:52
I gonna be able to convince her to come back on.

Scott Benner 1:14:55
I think so. Yeah, I do. Just trying to get her into a spot where she's In the right, mindset, sorry to mind yeah, yeah. So we'll say, I really do want to talk to her one time before she goes to school, which is coming up now in. Oh, geez. Maybe seven weeks. She's gonna leave.

Karen 1:15:16
How are you feeling about the separation? Very upset. So yeah.

Scott Benner 1:15:22
I don't, I don't I've been thinking about it in different like planes of existence. I've been thinking about the diabetes stuff. I've just been thinking about the part where she's just not going to be here. You know, and hanging around like she and I, our personalities are very similar. So, you know, we spend a fair amount of time bullshitting together and stuff like that. So,

Karen 1:15:45
yeah, who you gotta bounce off. And she's not

Scott Benner 1:15:48
assuming Kelly's gonna shoot me within days after her. That's what I'm thinking. I'm pretty sure about that. So, but I don't know, and she's gonna go a great distance, which is unsettling. And then of course, you know, the idea of overnights like, you know, I mean, you can be as good at diabetes as you want. There's still like, if you don't think that, you know, we're not, you know, Arden's not drinking juice, sometimes at four o'clock in the morning, like, you know, she is, and so, still variables. So yeah, and everything's gonna change. Plus, she's been taking new stuff that we think might change her insulin sensitivity, and it's all happening as this is happening. And you're like, Oh, God, but there's no good time, like, you know, so I'm sure it's gonna be fine. It's gonna be fine. Because of, I mean, because of algorithms, and because of Dexcom. And, you know, because we can call each other and that stuff's all going to, you know, make it better. But, you know, I have seen seizures in my time. So I'm not unaware, I'm not unaware of them. And

Karen 1:16:56
I wanted to make sure that I said to you, before we close that, you know, I had said how the book really changed my life. And you really changed my life since then. Because I never 45 years never heard of Pre-Bolus We were always told Bolus right before you eat, you know. And, you know, so many things that I've learned from the podcast, and I go back and look at them again, and again, and again. Like, I'm still dabbling with fat and protein. But you know, your information, and your delivery has really made a big difference in my life since since I started listening.

Scott Benner 1:17:42
Karen, if you're trying to make me cry at the end, I'll do it for you. Because you're gonna cry. I'm gonna cry. Yeah. Luckily, we said hemorrhoid earlier. So I don't think I can. I can't get all the way to here today. I don't think although I'm gonna cry later, when I realized I said that on this podcast.

Karen 1:18:01
You have you have the edit button?

Scott Benner 1:18:04
I don't know. I don't edit anything out of this thing. Yeah, that's my detriment sometimes.

Karen 1:18:08
But it really, you know, even to an old, an old hand 45 year veteran, you know, you still had a big impact on my management and my control today. So

Scott Benner 1:18:21
I hear you, I'm more important than your husband, your life. Is that which that's true. That's true.

Karen 1:18:24
And he's really sick and listened to me talk about?

Scott Benner 1:18:31
Well, well, I mean, I don't know, I don't know what to say to that. Except Thank you. And, um, I'm very happy that it's valuable for you,

Karen 1:18:40
I wouldn't have known about Dexcom, I wouldn't have known about G voc, I wouldn't have known that it was really overdue time to switch to T slim from where I was before, if it wasn't for the podcast. And it's really made a huge difference in my life and my husband's life.

Scott Benner 1:18:58
So I'm very, I'm super happy for you. And I'm glad that if I had anything to do with that, I'm also hearing that I don't charge enough for the ads. So that's true. So I'm gonna check up the ad price for next year.

Karen 1:19:11
I think you have to

Scott Benner 1:19:12
sell and stuff like crazy over here, you know? That's right. Well, I mean, listen, it really struck me during your conversation that that book was somehow the podcast for you back then. Like, exactly, you know what I mean? Like, it's just, it's this other information, where you can get away from your doctor and get outside of the bubble and say, Well, that makes sense to me. Or, you know what, I don't like that part. But like, you know, because I don't think you know, I'm not under some delusion that everyone's managing it exactly the way I would. I just think we all talk about it, and then you take from it, what's best for you and make your own adjustments?

Karen 1:19:50
You know, we're all doing better in one way or another, you know,

Scott Benner 1:19:54
I have to say, it's, it's, um, I don't know. I don't know what to say even The other day, I said something, Jenny checked on me because my iron was low. And she she texted me in the middle of the day. And she said, Hey, are you okay? And I said, Yes. And later I said, I appreciate you checking on me. And she said, Well, someone should check on you look at all the people you're helping. And I and I really, honestly, I don't I mean, I don't think of it that way day to day, you know, so day to day, I'm having conversations and editing conversations and putting them up. And sometimes I step back. And I think, like this thing is, it's important for people who use insulin. And I didn't mean for it to be like this. Like, I didn't expect this to happen, but it did. And so now it seems like, it almost seems like a public trust at some points. And

Karen 1:20:49
exactly that exactly. That. And all of us feel that way. Well, that's, you know,

Scott Benner 1:20:55
thank you. There's three reviews. I don't think those people feel that like me at all.

Karen 1:21:03
But you probably never really listened.

Scott Benner 1:21:06
They would like me if they met me. Yeah, that's true. Or my wife would say, we're probably not.

Unknown Speaker 1:21:12
But I just think that

Scott Benner 1:21:16
Listen, I'm not the first person to talk to people who have diabetes, I'm not the first person to say stuff out loud about how they manage, I think I might be the first person who found a way to scale it. Like to really scale it, not just like, you know, I mean, there's some popular blogs out there in the day. But they don't hit numbers like this. And I'm glad for other people who are doing the same thing. But the truth is, best I can tell. You could take all the other podcasts that have to do with diabetes and add them up. And they might not reach as many people as this thing does. So like there's something there's something about, about scale, because scale creates a movement. Right? And it's not something you can see, like I'm pretty much the only one that can feel it because I'm centralized to touching people. But now that the Facebook page is so big, I think if you're in there, you can see it too.

Karen 1:22:12
And it's it's been truly the key for so many people. Yeah, really unlocked all that knowledge, all that all the possibilities, you know, really gave our lives possibilities. Well,

Scott Benner 1:22:25
listen, I'm all of you. I just was another last person who was trying to figure out what to do about diabetes, really, I was just trying to figure it out. And then honestly, I just started talking about a long line because I was trying to raise money for the JDRF. And then it just grew from there. And the focus changed. And then technology changed, which is really, which is really the big benefit of this. I mean, honestly, I think I just got to it first. I mean, I think I'm good at it. But I think I also got to it first.

Karen 1:22:59
I think the availability of having it as a podcast is is really invaluable. And actually, I had never listened to a podcast until I got hearing aids, you know, and then it was like, oh, Dingo books on tape. And podcasts I can listen to right through my hearing aids, you know, and you go everywhere with me, you know, you're always in my back pocket someplace, I'm out the garden, you know?

Scott Benner 1:23:24
Well, now I'm smiling. That's nice cam before you made me cry, now I smile. Well, you're very kind to say that, and I appreciate it very much, and

Karen 1:23:33
makes it easy to get the information, you know, for it to be so available. Cuz I'm gonna be so available.

Scott Benner 1:23:40
I'm delightful. Really? That's what it is. That's true. That's true. Well, listen, Karen, you're you're very nice. I think maybe if I did, if I innovated anything, it was talking about diabetes in a way that was meant to be entertaining. Because no one wants to listen to that. Like, I mean, a dissertation on bolusing. Like, who's gonna sit through that crap? You know what I mean? Like, it just might be it's very important for you. But it's not something that people are going to purposefully be like, Yeah, sure. I'll put five hours into this over five weeks. And then you get the podcast big enough and popular enough. And then here comes the pro tips. And you think I like the other stuff. I'll try this. And then hopefully, the pro tips or even, you know, still entertaining enough that people will go oh, let me try another one and then hear your story or someone else's story. Because I think that's where, if I'm being honest, I think I think most of the benefit comes out of people's stories. Because ABS

Karen 1:24:40
Absolutely because as even for all the years that I've had diabetes, I only recently for the first time met a diabetic in the rat in the wild. No kidding. I'd never knew anybody else that had type one diabetes, you know, something, you know, people say Oh, well, my aunt has Type Two was not the same thing. You know?

Scott Benner 1:25:02
It took like all those never to miss all those years

Karen 1:25:05
never never encountered another person

Unknown Speaker 1:25:08
with type one that you knew about that I

Karen 1:25:10
knew of. Yeah. And I'm just very always out out front with mine, you know. So

Scott Benner 1:25:17
you think you would have you would have met somebody? You I know as long as they were willing to speak up about it. Yeah. Because you were right about it.

Karen 1:25:25
It was crazy. You know, it's like, and so the stories mean everything to me. They're like, my community that I never had. Right, you know? So well,

Scott Benner 1:25:33
I feel the same way. I really do this. But it's, you know, I still take crap from adults who are like you make a podcast, that's what you do. And even sometimes my kids are like, it's hard to tell people what you do. And I was like, I know, don't worry, like, because she's like, did

Karen 1:25:48
you say you're a diabetes consultant?

Scott Benner 1:25:51
Listen, I'm not that because nothing you hear on the Juicebox Podcast should be considered. etc

I want to thank Karen for coming on the show today and sharing her story. I want to thank touched by type one, and remind you to go to touched by type one.org. I'd also like to thank us med us med.com forward slash juice box get your free benefits check today. Prefer the phone that's fine. 888-721-1514 don't forget all you need to do to save 10% On your first month of therapy with better help is to use my link better help.com forward slash juicebox 10% off your first month. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

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#876 Best of Juicebox: Altered Minds

Originally aired on May 28, 2021. Scott and Jenny talk about how high and low BGs impact your ability to think.

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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 876 of the Juicebox Podcast

Hello and welcome back to the best of the Juicebox Podcast. Today, we are revisiting episode 485 altered minds. This is an episode where Jenny Smith and I discuss how high and low blood sugars can impact a person. While you're listening today, please remember that nothing you hear that 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. Are you a US resident who has type one or the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juicebox. Join the registry complete the survey. When you complete that survey. You are helping type one diabetes research to move forward right from your sofa. You also might be helping out yourself and you're supporting the podcast T one D exchange.org. Forward slash juicebox.

This episode of the podcast is sponsored by cozy earth. Now you can get 35% off your entire order at cozy earth.com Just by using the offer code juicebox at checkout, I'm wearing cozy Earth joggers and a sweatshirt right now these joggers are like the best and our sheets are super duper super, super cool. And silky and soft. Also from cozy Earth cozy earth.com use the offer code juice box to save 35% Hello and welcome to episode 485 of the Juicebox Podcast guest who's on the show today.

Today on the podcast, I'm joined by Jenny Smith. Jenny, of course, is from all the defining diabetes episodes, and the Pro Tip series. And today she's here to talk about how people can be altered in their in their minds when their blood sugars are high or low. Right. So if you're looking for an understanding of what high and low might make someone feel like or could make you feel like this is the episode for you. During this conversation, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. Were becoming bold with insulin.

Jenny holds a bachelor's degree in Human Nutrition and biology from the University of Wisconsin. She is a registered and licensed dietitian, a certified diabetes educator and a certified trainer I'm most makes and models of insulin pumps and continuous glucose monitors. One day when I grew up, I hope to be just like Jenny.

The T one D exchange needs 6000 people to join the registry. And I have to keep saying this to you until you do it so that he went to exchanges looking for T one D adults and T one D caregivers who are US residents. They want you to participate in a quick survey that can be completed in just a few minutes from your phone or computer after you finish the questions. And they are very simple. I completed the survey in about seven minutes. You may be contacted annually to update your information. And they may even ask you a couple more questions. But this is 100% Anonymous, it is completely HIPAA compliant, and it does not require you to ever visit a doctor or go to a remote site. See this is interesting. This is a way for you in just a few minutes to help other people living with type one diabetes. past participants have helped bring increased coverage for test trips. Medicare coverage for CGM, and changes in the ADA is guideline for pediatric a one C goals. These are important behind the scenes things that people with type one diabetes need, and you have a unique opportunity to help them. These are not deep probing personal questions. They're pretty simple basic surface diabetes stuff, but they just need the data. Help them AT T one D exchange.org, forward slash juicebox. And at the very least, if 6000 of you go right now, I don't have to say this again, do it for me. I'm kidding, do it for the other people living with type one diabetes. But I mean, if you want to think of me while you're doing it, it's fine. This one's weird. But I will say.

Jennifer Smith, CDE 5:22
I mean, it's it came from somebody

Scott Benner 5:24
came from somebody, but it's not from somebody. But But it made a lot of sense to me when they said it, and then I left it on my list for a long time. And every time I look at the list, I'm like, Yeah, we're gonna have to talk about that. I think so.

Jennifer Smith, CDE 5:38
Hopefully, I have something.

Scott Benner 5:41
So I'm posing this next question to you, Jenny. Because you have diabetes, and you would have, you would have a real feeling for what this is? Maybe? We'll see. We'll see. Hopefully, I think you will. So I hear this from either parents or spouses usually. And it's something we make light of in communities and joke about, like I've said before, to my daughter, you know, when she was little, I'm going to test your blood sugar. And if it's not high or low, you're in trouble. Right? You know, like, because you kind of can't, you can't tell, like, is somebody acting a certain way? Because they're altered? Or are they acting a certain way? Because they're, you know, right, a pain in the ass. So like, you know, which isn't, but that always makes me feel like what is the person with diabetes hearing when they're altered? And so that's what I want to understand. And when I'm we're gonna do both. But let's start with higher blood sugar. So I know there's no Mendoza line that you can point to perfectly. But I will say I've always said in the past that as Arden is active if her blood sugar starts to creep above 161 80, I could see her slow down, her reactions get slower, things like that. We know that people get cloudier. We've talked about on the podcast a million times as you get higher and higher. But what's it like to be in your head? When your blood sugar's higher? Like, like, what if your kids are acting up? Or your husband's being unreasonable? Or you have to make dinner? Like and like, what does that feel like to you?

Jennifer Smith, CDE 7:18
Yeah, I think it to me, it feels one, I'm just annoyed. Right? And it's not annoyance with them. It's annoyance for the number for whatever it is where it is, right. And it can be even worse, if it was like a bad site, right? That now, you know, like, fiddling with for a while to actually get it. And I think then it the mental piece of that then comes when you're trying to manage this number that you're not happy with. And somebody interrupts that train of thought and that interrupt by, they're not like doing it intentionally to ask you, you know, can we have applesauce for dinner mom, you know, like, it's just a piece in the mix. So I think mine is more like, it's just a mental struggle at that point. And I do also tend to, I get kind of headachy. Okay, not so much when I have lows, but more. So when I am higher, it's that like, mental, that foggy kind of piece. And it makes me feel headachy not the kind that's like a throbbing, but it's like that cloudy kind of headache that you get. And again, that's just an irritating factor in and of itself, too.

Scott Benner 8:40
So there's a mechanical portion of it where it is, you know, for whatever reason, either you, maybe you missed on a Bolus, or you said your site went wrong or something. So there's, there's a mechanical piece like I need to fix this thing, which becomes irritating as it would to any person like, like, if I walked into a doorframe, I'd be like, I cannot believe I just walked into a doorframe like that. So you've got that going on. And then you have the actual act of having to fix it. And then you're focused on that someone else comes in so this is still all mechanical like but then the headache happens. And that's not something like a like a like a warning light on your palm doesn't go off and say Jenny's got a headache now, right? So when a five year old comes at you, you you can't say to yourself, I'm I feel the pain in my head that I'm not even aware of yet. I'm going to react it you don't have like, that's not how thinking works. So then you're just level of irritation is, does it? Here's how I Here's one. Here's how my wife puts it. Around her period. She'll tell me I'm not being unreasonable. I just have less space for bullshit is how she puts

Jennifer Smith, CDE 9:52
it. That's really great.

Scott Benner 9:56
I don't I think she's covering for herself but I understand Have the intent of what she's saying. So there's a, there's a ceiling in people before they get upset, right. And there's all kinds of, of outside irritants that can limit that ceiling. But just your blood sugar being higher physically, can take away from your ability to, to abide both, basically, I guess, correct.

Jennifer Smith, CDE 10:21
And, you know, from my standpoint to, you know, with the work that I do, and all of the data management that I do and interpreting things for people, I mean, the majority of my management is just because they want to be healthy, right? But the other piece of it is, it also leads into my work. Can I get worked on really well, if I'm sitting really high, or if I'm sitting really low, my brain isn't functioning well on either level. So that management piece is always also there to benefit. I'm not typing out a message that's like, you know, I don't know why you're blessed.

Scott Benner 11:02
Mary, why don't you just figure it out yourself? I paid this lady helped me with my blood sugar. And she yelled at me. Yeah, that wouldn't be great. No, but I want people to understand that whether and I think they do. But if I do, I think they do understand that a higher blood sugar could be an issue. But the problem is, again, that you don't walk around as a person with diabetes with your blood sugar across your forehead. So when I come up to you, you're just Jenny to me. I don't know if your blood sugar's to 20. And you have a headache. And so how, what I guess what should those people be looking for? So that they can back up and go, Oh, you know what, this could be that because even if I understand that your budget, say I come up to you, you react oddly. And I immediately understand that your blood sugar that's high. If I say to you, oh, your blood sugar is high. I'm sorry. That's just gonna make it worse. Right? That's the, that's the diabetes equivalent of me saying, Oh, you have your period. I won't bring up the car payment right now. Right. Okay. Okay. Yeah,

Jennifer Smith, CDE 12:02
Yeah, kinda. And I think it does bring up a good. A good point, though, especially for I think this goes more for adults who have a spouse or a significant other or partner or whatever. Because like, Nathan, he follows he's got Dexcom follow, you know, if Scott my stuff, but I mean, he doesn't keep it open and follow me all day, he's got the alarm set, and all of that for like, high and low. But other than that, I mean, he just, he likes me alone, honestly, which I'm very thankful for, I'd say to counting carbs for me if he's like done dinner or something, you know, which is awesome. But in that regard, I think it also means that as the person with diabetes, you kind of also have to share more at times. Because as I do more often with my kids, I share with them, you know, this is what I feel like right now and go color in your coloring book for like 10 minutes while Mommy changes her bad pod, or whatever it is? No, but I think it means that you have to express a little bit in order to decrease the chance that somebody's going to interpret your reaction to something in the wrong way. Because certainly, I mean, that's happened in the married a long time. And there's definitely been like blood sugar reasons for reactions that didn't really come out as response that I meant it to come out kind of sounding like. So I think sometimes you have to be open enough to be able to say, hey, you know, I need this, like, 15 minutes to manage around this, come back and like, ask me in a bit,

Scott Benner 13:42
but that could come out as I wish I would have dated your brother instead. There you go. So I have a little context around this, which I've mentioned often on the podcast over like the last year or so. And it's just that my, my iron level got really low. And I completely understand what you're saying, like saying words, not having the intention behind them that the words have and also not being able to see that it's happening. Like that's the interesting thing, like when you're saying something to somebody, even if it's a tone, you know, just the wrong tone. And you don't know what's the wrong tone while you're saying it. Like when you're being sarcastic with somebody when you're you know, when you're in an argument you're like, I'm gonna ramp this up right now, you're aware you're going to do like, I'm going to say something now that's going to make you upset, but it's happening. And not only do you not know what's happening, but you don't think it's happening. And that's the that's the real fascinating part like is that you're doing this it feels like it's you're doing it but it's just that there's a level of a, a trace element or something in your body. For me it was iron, you know, for you, it's going to be not enough insulin, and you're just you're not yourself and it's It's tough because you're asking you're getting you're an adult who's Ultra aware of their blood sugar's like you really like you're, you know, you do an amazing job for yourself. So maybe you can see it. We're all trying, right one way or the other. But my point is that maybe you've been able to teach yourself over time to go my numbers up, like I won't get involved in an important conversation right now, where I'll send my kids off the collar for a second so that I don't tell them I wish I didn't have children. But but you know, when your kids 16, or you're 24, and you've had diabetes for a year and a half, and you're at work, like you don't, you're not gonna see that common like that.

Jennifer Smith, CDE 15:42
No. And mine's more so in terms of like, like, spit out of things that I don't even know that I've like said the way that I've said is more so even when I'm low,

Scott Benner 15:53
honestly, let's switch to that idea. Now.

Jennifer Smith, CDE 15:57
It's, there's much more like the it's like a fragment of like thought in your brain. You're trying to manage how you're feeling with this low while you're probably waiting for the low to not be low anymore. And in that come the things of life. I mean, unless you're a single person and not interacting with kids or adults or other people around you. There's always someone you're interacting with. And that interaction, then in that time period where your brain isn't really firing all. Wait, it doesn't you don't interpret it coming out in sort of the jagged way that it does. And then aftermath is often Well, I'm really sorry, or, you know, I didn't mean that, or, I've Well, I felt like crap. Does he bother to me?

Scott Benner 16:49
Does it feel like that afterwards, like after it's over, and you're okay. Do you have the guilt that you did something wrong? Because it's not true? Right, you know,

Jennifer Smith, CDE 17:02
right. I mean, only in the scenario that, you know, we may have been potentially discussing something or whatnot. And that was the case during that discussion. Yeah. I mean, that obviously, every time by any means, do I feel bad about, you know, yeah. But yeah, it's a hard, it's a hard thing. And sometimes even with lows, I think that I will have responded to something. And it's been in my head that I've actually and my husband will be like, Did you hear what I asked you? And I'll be like, I told you, whatever. And he's like, No, it really didn't say it out loud. It just like that muddiness that I've, I think commented about before when I feel like I'm like, sort of like

Scott Benner 17:50
that's the real low there's a slide in there there in the beginning, right and numbers wise, doesn't really matter. But you know, if you're the way I think of it with Arden is maybe between I would say it's 65. Artem maintains herself. Hey, Dad, I feel dizzy. You know, like, she's just like that. She's a little kind of jokey about it right there. It's almost like you could be like, Hey, let's not do anything and see if you die. And she'd be like, okay.

Jennifer Smith, CDE 18:16
Yeah, that level, but it's Yeah, right. She's

Scott Benner 18:19
elated for some reason, right there, okay. And then it goes down, and her energy drops away. But if you were to catch her there, if somehow she got past the elated part into that part, and that's where you first intersected her, she'd be snappy, like, Loreal, short and nasty, right? And then I think after the nasty is what you were just talking about where the last, the last fragments or thoughts are, right? Yeah. Okay. It's almost like a and then there's, you know, falling over and not being able to help yourself. But as it's happening, are you able to consciously think, hey, my brain is trying to shut off and I'm the only one who's going to stop it. Right? Or does it turn into just a physical like, eat something feeling?

Jennifer Smith, CDE 19:06
I think it's probably a little bit of both. I mean, in my, I can't remember a specific time. Soon after my first was born, we had gone I think it was too cold to actually and I was standing in, and I was nursing IVs at that point. So all the fluxes that can kind of come with blood sugar and whatnot, mostly like lows and my husband had gone off looking for something in like the men's department and I was standing like, in the toy department. We were looking for something specific for our little guy. And I can remember feeling low, and like, you can determine like those dropping lows. I was dropping, and so I sat down with my baby on the floor. And I get out you know, my glucose tablets and I'm eating my glucose tablets and I I had my husband found me. I mean, I was fine. But I was sitting there just like waiting for the load to fix itself, because I knew that I had taken care of it. But in that I had also gotten my phone out. And I was texting him to come to the kids department, right? Because I was low, only I never hit send. Okay, I was just like, that's kind of that like, broken, like thought kind of that can happen.

Scott Benner 20:28
Wow. Do you ever get in a moment like that? Is? Are you cognizant enough to think don't fall forward on the baby? Like, do you have like, do you have those feelings? Like all

Jennifer Smith, CDE 20:38
the reason that I sat down? I mean, from my back thought to what I was doing, I would have thought, you know, I need to sit down. I've got a baby who clearly can't stand on his own yet, you know, I mean, it was I think he was probably like six months old or something. And it's a sit down, treat your low blood sugar. I mean, I've always been able to treat so I've never had an issue with not being able to help myself. Outside of like, when I was a teen with my parents. So yeah, but it's, it is I mean, in those instances, sometimes there's not enough to like even like, be angry, you just can't even communicate quite right.

Scott Benner 21:15
It's interesting. It's super interesting to me the way that first of all, the way your body handles a falling blood sugar, it's, it's when you start losing faculties, you're it's your body shutting down, it's basically services. It's like, oh, we don't need that one, like and it just, it just, it has this finite amount of sugar in your blood. And its goal is to keep your brain running. Correct, right. And so it starts shutting me out, stop, right, stop sending sugar to this idea. And this idea. So you're like, going down, and it's your body going like, it really is, it's like, let's try to see how long we can stay alive until something intervenes. But you describe the the actual actions you take very similarly. Like, alright, like, Okay, I'm not okay, I'll sit down, I'll start taking these things. That's more important than telling someone right now, it's important to tell, like you're doing the same thing. You're making these like,

Jennifer Smith, CDE 22:11
it's just that you're not like, consciously. It's almost like your brain like those, like files in the back that were like, do this now. They take over, even though you're not really like, consciously aware that you're like sitting down and like drinking your juice box, or whatever it is, you do it because it's a habit. And you know that that's what you need to do with the symptom?

Scott Benner 22:36
Would you looking back on a scenario like that, if that if the Jeeva hypo pen existed, then would you being with your baby, would that have been enough for you to be like, I'm not going to take tablets, I'm going to hit myself with glucagon. Or no, you still would have handled it that way.

Jennifer Smith, CDE 22:54
You know, possibly, with, with what I remember about that being such a quick drop in my blood sugar, I mean, it's not like we're running around the story. It's just like, I'd probably nurse before we went in the store to keep him happy. And like, there was enough to feed into the store. But I mean, maybe I mean, I certainly have got like an extra back cine that I typically take out, especially when we're like traipsing around the neighborhood to the parks, and whatever. I mean, my eight year old knows about it. So possibly, I might have done that.

Scott Benner 23:33
Just because me with the back shimmy, and like the G vote now being like ready to go. But prior to that I only ever thought of glucagon is like, you passed out and somebody came upon you and gave it to you. Like that's how it felt. But now all of a sudden, like it's there, and it's easy to use. And like, I wondered about that, like how you would think about it?

Jennifer Smith, CDE 23:53
Yeah, yeah, you could, I mean, it's certainly not a bad thought by any means. Especially I've worked with a couple of women post well through pregnancy and then postpartum who have had spouses who've been military. And so they have after a certain amount of time, postpartum, you know, their spouse goes back, you know, might be deployed again, someplace completely away from where they are, they're pretty much on their own. With a baby, they might have the support of friends or family coming in once in a while, but that's not at two o'clock in the morning. So you know, in a case like that, where you're dropping a really low and you're really worried about it not sure. That's what a product like that is therefore it's also the benefit potentially, of, you know, like mini dosing that age old red Lily glucagon.

Scott Benner 24:42
So, here's the question then, because I came at this from the idea of the people who are going to interact with a person who's either too high or too low. I have to be honest, when Arden in the past has been too low, where she's refusing, I just go with like a forceful Because I think like, I tried talking or like, you know, I've gone with the Come on sweetie drink it, it's really important like that stuff that doesn't go it's almost like you're not talking to the complete her know, you know and so you just you make these declarative forceful statements, drink the juice, drink it, drink the juice, drink the juice drinks, and I'm talking like I remember I know people say to me all the time, you know, you must know what it's like to raise a little kid with diabetes back before all the technology and I don't talk about it very much, but it's really bad. And so you know, like back before CGM and all that. There's, it's three o'clock in the morning. You're there with a six year old and you're like, alright, and drink the juice, like drink the goddamn juice right now, you know, and because there also was no CGM, like at some point. So what's happening? Yeah, I'm like, you know, and you don't, you're not yelling, you're gonna die. But you're, it's how it feels in your head when you're talking to them. And I think that's much easier to figure out with a low blood sugar, right? Like, that's obvious to people, but it's the, it's always the high ones that make me I feel badly, like, I feel badly when I hear I've used this example over and over again, but it sticks with me, like right in the center of my heart so much that a woman found the podcast, it helped her daughter. And when she sent me a note, months later, to thank me, she said, I really just thought my daughter was a bitch her words, and that we weren't going to get along for our whole life. And it turns out, my daughter is a lovely person. And I didn't know because her blood sugar was always high. And that makes me want to cry. And, you know, and, and the, the idea that that could happen, either at the beginning, right? Like, you'll hear people say, Oh, I didn't realize, you know, that this stuff happened, or I helped somebody recently, with a baby, a young kid who has autism. And at the end of talking, I said, Hey, you might see a difference in, you know, just how to validate personality and stuff. And that person was so sure that that wasn't going to happen. And then three days later said to me, you know, he is happier. And I said, Yeah, like you don't, you don't know. And then that's a sad situation, because then the the poor kid couldn't tell, you know, could isn't verbal to begin with very much. And but I just think about that for everybody else, if you're running around with blood sugars that are 170, all the time your body gets used to it. So physically, you think you're okay, but you're not like you're not the person, you were going to be right without diabetes, you know. And so there's just what

Jennifer Smith, CDE 27:40
even from a mental standpoint to even from performance, right? You may not be, you may not be putting out everything you possibly could putting things together, whether it's in school, or college or job or whatever. Because your brain is really not working at the level of glucose that is healthy for it to work at

Scott Benner 28:06
this conversation is at the core, why I initially years ago, brusque, so hard at the idea of better high than low. I was like, I don't think that's right. You know, you know, like, I think that that that does not seem right to me, I've known people who through a lifetime, we're not who they were supposed to be, I just know it. And if you lose your you know, it's it. Every day you lose is gone, every hour you lose is gone. And days turn into months that turn into years. And before you know what people just think you're a prick. And you know, and that's just not,

Jennifer Smith, CDE 28:40
you may not be at all. Yeah, maybe with

Scott Benner 28:43
another two units of basil all day long, you would have been an absolutely delightful person and that, and, and then I think about the people on the other side who have to deal with you who love you. And then think, Oh, I love a guy who's just a jerk, but maybe isn't, or you know, vice versa, or your kids or I don't know, I just I want people to be very aware that outside of a normal range, that the lack of or addition of sugar in your blood is having a real big impact on your personality and your ability to live and make decisions and everything right?

Jennifer Smith, CDE 29:16
I mean, I've even had parents who who've asked me, you know, how do you? How do you discipline your child with diabetes? When you're like, do you always refer back to the blood sugar to begin with? Or, you know, do you just discipline them as if they don't have diabetes? And quite honestly, think if they require discipline, because they threw the stone through the front window? Because they were aiming and wanted to do it? I mean, really, unless their blood sugar's like 12 really low or really high. Obviously, that was that was like a decision on their part. They deserve to be punished right away that

Scott Benner 29:56
if your blood sugar's 150, and you're breaking windows You're just a gift. Yeah, but, but But I mean, but if your blood sugar has been to 20 for your whole life, and you can't do well in math, it might not be because you're not good at math. Right? And you got to make that decision. Yeah, I mean, listen, I There are times, there's been one or two times that Arden has been so low, that she has said horrible things to me. And I just, I bear down and I think that's the blood sugar, and I just let it go. But you really have to be ready for it like because it's hard not to react. You know, I mean, Jenny, I'll bleep this out later. But when an eight year old calls you and you're like, Whoa, hold on. Please drink the juice. I wasn't looking for this I didn't recognize. And you know what, I've heard adults talk about it too, in a marriage situation where one person is physically stronger than the other person. And you know, can get low and then get, you know, violent, like, not on purpose, right. And now you're in a much different situation. Yeah,

Jennifer Smith, CDE 31:09
I actually had that when I was working in DC, a couple, an older couple had actually come in to our diabetes clinic. And the man was complaining, he's like, sometimes I'm scared. I think she had gone to the bathroom or something. And then we were just chatting. And I think it was on the topic of like, hypose. And he brought up he's like, sometimes I'm kind of scared of her. He's like, one day she threw a coffee cup. Okay, well, that wasn't really your wife. That was a low blood sugar.

Scott Benner 31:42
So I will tell you for blood sugars every 95 and she throws something at you. I don't think she likes you.

Jennifer Smith, CDE 31:48
Then there was something you did really nasty to her. So

Scott Benner 31:51
that's okay. I appreciate you talking about that was really good.

Could you just not talk to Jenny every day, I know I could. I wish I could actually just doesn't work out like that. Anyway, Jenny does this for a living it integrated diabetes.com. And you can check her out there. There's a link in the show notes. What comes next is about the T one D exchange. If you heard it in the last episode with Johnny, and you haven't done it, let's get to it. But if you haven't, the T one D exchange needs your help. And the help they need is super simple to give. You just go to T one D exchange.org. Forward slash juicebox. That's my link, use that link. And then when you get there, click on Join our registering now. And after that you complete this simple, quick survey. It's for US residents only. But it's so easy. Like right now, if you did it right now look at your watch. Or you probably don't have the watch to pick up your phone, touch the face of it. If you did it right now, you'd be done in less than 10 minutes. It took me three hours to bring you this episode. And this is all I'm asking in return. T one D exchange.org. Forward slash juicebox. I mean, seriously, I had to book Jenny, record the thing. Edit it. I mean, you notice how there's no like pops and clicks and noises and nothing distracting while you're listening. You're welcome. That was me. Scott. click click click with the mouse. They fix the whole thing for you. hours it took like you're just like, oh, it was a quick 25 minute episode. It was nice. God said insulins important. Bah, bah, no, no, there's more than that. It's deep. It's deep. It's building a narrative in your life about type one diabetes, giving you the tools and the access to information for the free. And all I ask is that you go to T one D exchange.org. Forward slash juicebox. I only need 6000 of you to do it. I mean, there were hundreds of 1000s of downloads last month. I just need six of you. And I'm saying of the hundreds of 1000s of downloads. I need 6000 I'm tired of saying it too. I know you're tired of hearing it. I'm tired of saying it. But I mean at some point one of us has got to pick up the mantle and do their part. I can only do this I filled out the survey is easy. Alright, I'm gonna stop I apologize. That was I that was too much. Too much. I should just say T one D exchange.org. Forward slash juicebox. You need to be a US resident who has type one or is the caregiver of someone with type one. Please go fill it out if you have the chance. I mean that's that's how I should say it. But I mean, come on. This podcast is amazing. And it's free. Free and what do I say to you? You know if you want to try out an omni pod, go to omnipod.com Ford slash juice box I say if you want to check out a Dexcom go to dexcom.com forward slash use box I say you want to get a great meter contour next.com forward slash juice box I say hey, my daughter's got this G voc hypo pen you should check it out. That's it. I mean, you don't have to check it out. I'm not telling you to buy an AMI. But it's not like if you don't buy an AMI pod, you're not allowed to listen anymore. I'm just saying if you're going to go check it out, but this T one D exchange thing. I mean, you're on the internet constantly. I see the people in my life. I know you don't put the phone down. And I'm not judging you. I'm just saying why you're doing it. You don't I mean, P one, D exchange.org. Forward slash juicebox. Help a guy out a little bit. Don't make me beg you. It's embarrassing. I'll tell you what, if the T one D exchange contacts me at the end of the month, next month at the end of June and says we've added 1000 new people to the registry. Thanks to you. If they say that, what will I do? I will do an online talk about using insulin. Once a week, in July, once a week. Okay, I'll come on. I'll do it on Zoom. It'll be free, obviously, because you helped me out with the D one D exchange thing. And I will answer everyone's questions as long as I can. If we reach 1000. Now if we reach 1500, I'll get Jenny on one of those calls. If you do 2000 I'll do the call. Right? Every day every what I say every week in July. Jenny wants and what else will I do? I'll do something else. That's cool. I don't know what yet, but trust me, I'll come through T one D exchange.org. Forward slash juicebox. Use the link complete the survey. That's it

I hope you enjoyed this best of episode altered minds. It's a personal favorite of mine. Would you like to save 35% on this sweatshirt that I'm wearing here? Are these silky joggers? Am I rubbing my legs while I'm saying it? I'm not gonna tell you because it sounds creepy, but they're super soft, cozy earth.com Save 35% at checkout with the offer code juice box. And of course you can get 10% off your first month of therapy@betterhelp.com forward slash juice box just by going through that link. It's all you have to do. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. If you enjoyed this conversation and you're not in my private Facebook group, it's absolutely free and I think you would love it Juicebox Podcast type one diabetes on Facebook private group 35,000 Plus members. That's over 35,000 members, tons of conversations, opinions, perspectives, and great conversation absolutely free. Go check it out.

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#875 Dog Faced Fox

Elle is the mother of a type 1 and her house is noisy.

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.

+ Click for EPISODE TRANSCRIPT

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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 875 of the Juicebox Podcast.

On today's episode I'll be speaking with the mother of a child with type one diabetes, her name is l and l was not good at getting her equipment set up. I'm not gonna lie about that. This just gets ridiculous and I mean funnier and funnier as it goes along. But nevertheless, while you're listening to it, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan for becoming bold with insulin. If you're a US resident who has type one or is the caregiver of someone with type one, please, please please go to T one D exchange.org. Forward slash juicebox and complete the survey. So all I'm asking you to do in exchange for that here. If you want to get some super cozy jammies or bedspreads, sheets, towels, pajamas, cozy earth.com at checkout, use juicebox to save 35% on your entire order cozy earth.com there see fill out the survey for me and then go get yourself some like 35% off jammers. Although I would get these joggers if I was you there's so soft this episode of The Juicebox Podcast is sponsored by Omni pod five. Learn more about the tubeless insulin pump and how it works with the Dexcom G six at Omni pod.com forward slash juice box. Get yourself an omni pod five. podcast is sponsored today by better help better help is the world's largest therapy service and is 100% online. With better help, you can tap into a network of over 25,000 licensed and experienced therapists who can help you with a wide range of issues. betterhelp.com forward slash juicebox to get started, you just answer a few questions about your needs and preferences in therapy. That way BetterHelp can match you with the right therapist from their network. And when you use my link, you'll save 10% On your first month of therapy. You can message your therapist at any time and scheduled live sessions when it's convenient for you. Talk to them however you feel comfortable text chat phone or video call. If your therapist isn't the right fit. For any reason at all. You can switch to a new therapist at no additional charge. And the best part for me is that with better help you get the same professionalism and quality you expect from in office therapy. But with a therapist who is custom picked for you, and you're gonna get more scheduling flexibility, and a more affordable price. I myself have just begun using better help. Better help.com forward slash juicebox that's better help h e l p.com. Forward slash juice box save 10% On your first month of therapy. Don't don't start out don't start looking behind you. Because you're okay. You're gonna look away from other microphones. Okay, all right, I can do that. me a second. I'm so tired now it's over. Alright, so you're being recorded so that you know. Okay. I am a little lightheaded. Give me forever. That was like the longest one maybe ever. That's okay. I think what will happen is later today, you'll just realize there's a switch on the headset that turns the microphone on or something

Elle 3:49
like I've been looking around. It's not mine.

Scott Benner 3:53
Is there a switch on the wire?

Elle 3:55
There is a a volume control on the wire.

Scott Benner 3:59
Have you tried turning it to see what would happen? I have I've gone all the way

Elle 4:03
down. And I've gone all the way up. And it just makes you quieter or

Scott Benner 4:07
louder. Okay, good. Well, let's get that adjusted to where you want it. Yep. All right. Introduce yourself. So we can start talking.

Elle 4:19
Oh, my name is Elle and I have technical difficulties. I have four children. And one of them is type one who's my oldest?

Scott Benner 4:29
Alright, let me just make a suggestion to everybody have less children or fewer children. And then you can afford a Mac you understand what I'm saying?

Elle 4:37
Oh, my husband would never allow.

Scott Benner 4:40
Yeah, God forbid stuff would work. And

Elle 4:46
it doesn't make sense to my brain. I will say that the Apple System I cannot. Like if you thought that I had technical difficulties with this. You would do you would just hang up on me if we were trying to figure it out on Apple. So

Scott Benner 5:01
let me tell you what would happen if you had, if you had an apple, you would have turned it on it would have worked. And that would have been the end of it. You would, there wouldn't have been anything for you to understand.

Unknown Speaker 5:11
But I probably wouldn't figure

Elle 5:12
out how to listen to the podcast. So I don't know. Like,

Scott Benner 5:16
I think you would, I definitely think you would, I'm sticking with what I initially said, have fewer children buy a Mac. Okay, I know sometimes you go out there's like, these tablets are at $9. And these PCs are foreigner bucks like, oh, $4 just,

Elle 5:28
oh, I don't really use my PC a whole lot. If you couldn't guess that? I do you use my phone a lot. I don't know what my phone's problem was today. But honestly, technology in general just hates me. I have wanted to take my printer out and beat it with a baseball bat in my backyard. So many times,

Scott Benner 5:48
we absolutely should have recorded the last 20 minutes and just put it at the end of the episode. Just just my my two favorite parts where you call it you were kept referring to the computer as it but you weren't referring to the computer, you're referring to the sentient decision making that was happening in front of you as it you're like doing this?

Elle 6:10
What else do you call it? What would you call it?

Scott Benner 6:12
Well, I mean, do you want to go over this? No. I tell me how old you are.

Elle 6:22
I am 36

Scott Benner 6:23
This is the closest I've come to speaking to my mom about tech.

Elle 6:29
I have been okay, so I signed up to be here at seven months ago. And every week I woken up and gone. My computer's not gonna work.

Scott Benner 6:37
Oh, you were right. I'm telling you, at least you're not paranoid. At least you're not paranoid. My mom when something would go wrong with her computer. She goes Come on guys. And I finally one day I was like Mom, who were the guys. Were the guys were talking about the computer. I was like, Well, who are you talking to? You're like it's doing this. And I'm like, I don't know what it is. And then, but the biggest. My biggest laugh I didn't actually tell you about was in the chat. While we were trying to figure out why it didn't work. You're like this was my biggest fear.

Unknown Speaker 7:16
And seemed like That's why

Scott Benner 7:19
I don't have an exact number L but I'm gonna guess I'm gonna guess that I record about I'm gonna make an educated guess here. I gotta do this. Don't spend weeks in the year say I'm the worst. Yeah, I'm gonna say that I record over 200 times a year. There are only technical difficulties about three times. I don't think they've ever gone on for 20 minutes before I win, as always, because here's what I feel like happened. I feel like you gave up.

Elle 7:56
But didn't. So I was like, I was walking up the stairs with confidence on my phone with my battery pack ready to go lock myself in the bedroom. And I'm like, it's gonna work. And I said testing, and nothing.

Scott Benner 8:12
I just maybe you didn't give up with effort, but I feel like he gave up in your heart. I feel like there was a moment where you were like, I knew this wasn't gonna work. And I'm not recording this podcast. Did that. Well, I

Elle 8:22
I sent a message to my friends before I started. Please wish all the blessings on my technology today. Because they know that this is this is my life. I'm cursed when it comes to technology.

Scott Benner 8:36
I'm gonna assume it's not you. I'm gonna tell you just keep squirreling away money. Get yourself a MacBook. Everything's gonna be fine. Okay. Alright, so I'm sorry, we gotta keep a diabetes, just say

Elle 8:53
he's 12.

Scott Benner 8:55
Okay. And you have four kids, though in total? Yes. How'd you figure that?

Unknown Speaker 9:03
Well, it works. Don't take computer for that. No technology

Scott Benner 9:07
for that. I'll tell you if you need to. You need a computer to have a baby. You'd be living with a cat. I have one of those. Alright, so hold on. So the 12 year olds got type one. And I don't need all the other particulars. But what are the ages the other kids just so I can make fun of your reproductive health and stuff like that letter nine, six and 2962. And you're 36 Six you married?

Elle 9:36
I've been married for almost 16 years since you were 20. I was 19. Oh, well. He was 20 by a couple days.

Scott Benner 9:45
Well, I don't care that your kid has diabetes as much anymore.

Elle 9:50
None of those were in there. None of them attended my wedding. Just so you know.

Scott Benner 9:53
I'm doing the math. Your choice is not what I'm saying. I want to know how you end up married at 19. Are you escaping the law? I know where you're running from l tell me right now. Don't you don't have to tell him. He thinks you love him. But where were you running from?

Elle 10:08
I wasn't running from anything. I promise. Like we chose to get married. We wanted to get married. And a lot of people tried to talk us out of it. But I remember

Scott Benner 10:18
where those married people trying to talk you out of it. Some of them. Yeah, it's because they've been married. Okay, so. Alright, see you. Wow, that's amazing. Like, were you in college or fresh out of high school? Or what was the situation?

Elle 10:34
We got engaged the week before? Oh, my goodness.

Scott Benner 10:37
Unbelievable. You have a dog too. After all the microphones. You're not allowed to have a dog and a microphone. That doesn't work. You have to pick one. That dog sounds like it just ran for its life and it's little feet wouldn't catch on to anything. Is that what happened?

Elle 10:53
Well, she's a corgi. So she is short. And she doesn't have much to catch on to around here. But she was chasing a cat.

Scott Benner 11:02
So. Alright, let's keep talking to see if we can find a good decision in your life.

Unknown Speaker 11:09
The Corgi is a good decision. Just saying.

Scott Benner 11:12
Isn't that the Queen's dog asleep?

Unknown Speaker 11:14
Yes.

Scott Benner 11:15
How the hell does she help? Oh, are you gonna say something? No. I'll be asleep.

Elle 11:22
Um, she will tell me if someone's here. She will tell me if there is something wrong in the world. Oh, corgis are very specific about who they let in their house and how the broom is put away.

Scott Benner 11:40
So this dog is stands in for your anxiety. Yeah.

Elle 11:49
Okay, me figuring she's my second Corgi. My first Corgi was

Scott Benner 11:53
from anxiety.

Elle 11:56
I got when my my oldest son was two. Oh, how long did they live? I'm usually around 15 years. She died when she was eight.

Scott Benner 12:08
I'm sorry. Yeah, that was unexpected. I imagined eight.

Elle 12:12
Yes, very. Gotcha. Um, but yeah, she. We had a person come to our house and make threats one night in the middle of the night. And after some counseling, I decided to get a dog.

Scott Benner 12:27
Oh, how did this How old were you when this happen? You're gonna tell me serious stuff. Don't let me joke about it first. Okay. So I mean,

Elle 12:35
she, she's a dog. So like, there's good and you know, scary things that. I mean, she, she's like companion. But I want to say she's not like registered or anything. She just

Scott Benner 12:47
helps you like a ninja or something like?

Elle 12:52
No, there was a situation where someone thought my husband was someone else and came in made threats to us. And I didn't sleep. Pretty much the last half of 2011.

Scott Benner 13:07
So sorry. So someone just shows up your house with a mistaken identity situation? Oh, okay. You don't have to tell. Do you want to not tell me?

Elle 13:16
I can tell you. It's just kind of a long story. My husband had a co worker that purchased a gun from him. And then he used it on himself intentionally. And his brother thought that my husband had somehow convinced him to use it or was a drug dealer or something. And he came to our house and we were sleeping. So like, we did not hear texts or calls. But evidently he sat outside my house for hours texting my husband, that he was going to harm us. And then when we woke up at like, three in the morning, we were like,

Scott Benner 13:56
what? And we're still outside.

Elle 14:00
He was not outside when we woke up and got the messages. Okay. All right. So he was a grieving brother. Right? But,

Scott Benner 14:08
and you live in Texas?

Unknown Speaker 14:10
No, no, I live in Iowa. I wasn't

Scott Benner 14:13
sure how many other states you could just like, sell sell a gun like that? Because I know in Texas, all this

Elle 14:18
was back in 2011. Okay. So things were a smidge different. But

Scott Benner 14:26
wow, that's terrible. Yeah, so sorry. Had you had you been an anxious person prior to that?

Elle 14:34
I've always been an anxious person. I remember waking up for kindergarten and feeling nauseous.

Scott Benner 14:39
Really? Yeah. Have you done anything about it? Um, as an adult.

Elle 14:45
So for the last, well, 13 years, I kind of feel like my body is not my own. Since I've been pregnant or nursing for the last 13 years. And so medication hymns and pregnancy and nursing don't always go, as well.

Scott Benner 15:04
So you would do something if you weren't so busy pumping these kids out. All right.

Elle 15:10
I mean, the dog worked for a while.

Scott Benner 15:14
For a while, such a strong title for the episode, you're talking.

Elle 15:22
And I mean, it's still like, if I leave her at the kennel, or whatever it's called, when you like, go out of town and and you'll get back in time to pick her up. have a hard time sleeping sometimes.

Scott Benner 15:33
Wow. Okay, does this been passed on any of your kids? Do you see any anxiety with the kids?

Elle 15:40
Well, that, that plays a pretty big part in my son's diagnosis story. Go ahead. So, in I'm gonna say, march 2020, which is all you know, everybody knows what that is. We, you know, can't play with our friends. We can't go to the park and meet up with people. We can't do any of the activities that we've been doing. So my son starts talking about how he can't sleep at night. And like, he thinks he has heartburn he thinks he has upset stomach. And at one point between there and diagnosis, he like he came down, he's like, I can feel my heart beating. And we just thought that he had anxiety. Okay. He's a very extroverted kid. And we had just moved to our current house, just from across town, but there were no kids at my other neighborhood. And when we moved in the first day, we moved in, he was playing with neighborhood kids in our yard. And like, that was a really important thing for both of us, that he have friends and relationships. And then in March, all of that was just taken away. I mean, for good reason, obviously. But

Scott Benner 17:02
before we go on, is there a washing machine behind your air coming out of a vent, or oh, it's the air conditioner.

Unknown Speaker 17:08
Do you want me to turn it off?

Scott Benner 17:10
I don't want you to sweat. What do you say?

Unknown Speaker 17:12
I'll be alright, I'll turn it off. I'll be right back.

Scott Benner 17:15
You're fine. What's the dog's name? My daughter Arden began wearing the Omni pod tubeless insulin pump on February 4 2009. That was 5093 days ago. Were another way to think of it 1697 pods ago. At that time, she was four years old. Hang out with me for a moment while I tell you more about the Omni pod Omni pod.com forward slash juice box. Today Arden is 18 and still wearing Omni pod back then there was one choice just one pod but today you have a decision to make. Do you want the Omni pod five, the first and only tubeless automated insulin delivery system to integrate with the Dexcom G six, because if you do, it's available right now for people with type one diabetes ages two years and older. The Omni pod five is an algorithm based pump that features smart adjust technology. That means that the Omni pod five is adjusting insulin delivery based on your customized target glucose that's helping you to protect against high and low blood sugars, both day and night. Automatically. Both the Omni pod five and the Omni pod dash are waterproof. You can wear them while you're playing sports, swimming in the shower, the bathtub, anywhere really. That kind of freedom. Coupled with tubeless a tubeless pump you understand it's not connected to anything. The controller is not connected to the pod. The pod is not connected to anything, you're wearing it on the body tube lessly no tubing to get caught on doorknobs or anywhere else that tubing with those other insulin pumps can get caught Omni pod.com forward slash juice box. That's where you go to find out more. You may be eligible for a free 30 day trial of the Omni pod dash. You should check that out too, when you get to my lake Omni pod.com forward slash juice box. So if you're looking for an insulin pump that is tubeless waterproof, and automated. You're looking for the Omni pod five. If you want to do it on your own, and you're not looking for the automation Omni pod dash for full safety risk information and free trial Terms and Conditions. Please also visit Omni pod.com forward slash juice box I should ask that center. Hey buddy. God save the Queen. I looking at pictures of corgis online. They are cute. Like a like a fox with a dog face.

Unknown Speaker 20:00
Okay, it takes a minute for

Scott Benner 20:02
your find your heart, let me know.

Elle 20:04
It's probably supposed to be 97 today,

Scott Benner 20:07
you'll probably find that What's the dog's name? Retta. I tried to call to the animal when you went away, but I realized I didn't know the name. Oh, and I had my headset on to. She probably hear you read over the D rehta. Or

Unknown Speaker 20:22
RH a TTA or

Scott Benner 20:23
H. Okay, I got it.

Elle 20:25
It means speaker of the house. I picked her name because Retta means speaker. Gotcha. So her official paperwork says read a speaker of the house.

Scott Benner 20:38
You got paperwork for your dog? That's nice. She's

Unknown Speaker 20:39
She's, uh, you know, my Casey certified Gorgui. There.

Scott Benner 20:43
I'm looking at the pictures to cute. They have a fox with a dog's face.

Unknown Speaker 20:48
Yeah, the booty is the best part.

Scott Benner 20:53
I can't comment on that, because then I just Google's Corgi, but okay, really? I promise. Alright, I'm about to do this. And if I see weird dog porn, I'm really good.

Unknown Speaker 21:04
I'm gonna be weird dog porn. Promise.

Scott Benner 21:07
Oh, they have big fat s.

Dog is thick with like, two seats. Yeah, absolutely. There's a tissue box cover here. That's according he's asked. And I gotta be honest with you. I'm into it. That's funny. All right. Okay. All right. Now, hold on a second. So the kids not stressed. She's got diabetes.

Elle 21:36
Mm hmm. All right. But it's pandemic height. So we didn't make a doctor's appointment for something that's not like life threatening, you know? Because anxiety in itself is not always immediately life threatening. Yeah. And there's a higher one, that I had my phone on me. That's fine.

Scott Benner 22:00
That's fine. Don't worry about

Unknown Speaker 22:05
so

Scott Benner 22:07
you don't make an appointment right away. And then what happens after that?

Elle 22:12
It's so I was pregnant at the time, of course, obviously. And then other things start happening that I you know, push off as new baby. His emotions are crazy. He was, like, had no self control. I mean, what 12 year old does but even more noticeable than it had been? He's we homeschool. So like, if anything challenged him. It was just a meltdown. Yeah. And I, I attributed that to a new baby in the house or a new baby coming. And thought, this kid needs some counseling. But we're not doing that right now.

Scott Benner 23:03
Have you seen that kind of behavior as other babies were being born?

Unknown Speaker 23:07
Yeah, honestly. Yeah.

Scott Benner 23:12
So, as expected, it was easy to like match up with something you'd seen in the past,

Elle 23:16
right? I mean, all of his symptoms were easy to match up with other things. Like, he's always been a big eater, like, eat and eat and eat. And he didn't have excessive thirst. But we were telling him to drink water. Because we're like, you don't drink enough water. You're saying you're hungry, because you need to drink more water. Like, let your stomach catch up with what you've eaten. Because he was eating as much as my husband and I and he was nine. But he's always eaten a lot. Like, since I could hand him a plate of food. The one of the first words he signed when he was little with baby sign language was more and I mean, it's always been a thing that he just eats and eats and eats.

Scott Benner 24:08
You teach the sign language when they're babies. Yeah,

Elle 24:11
before they can talk they can sign sometimes. So think milk and more and eat all done potty.

Scott Benner 24:20
Yeah, I've seen monkeys do it. I mean, sure. But I didn't know

Elle 24:26
it helps with especially like right now my two year old is just starting to string a couple words together, but she could tell me a little bit of what's going on without so much hassle. I don't know like it's harder for her to form words with her mouth than just tap her fingers together to say more. Okay. So, yeah, going back to Remy he was eating a ton. He was very moody. He was very skinny. And he's always been very skinny. But I found myself googling Why are my child's knees so big? Because he was super skinny.

Scott Benner 25:21
Oh, I see what you're saying. His knees

Elle 25:23
looked swollen because he had no fat on his body.

Scott Benner 25:27
Oh, can I say something? I think the people listening are going to be mad at me if I don't tell you that the air conditioner wasn't the the sound Oh no. I don't mind the sound does that why do you mind this out? Don't let me lie to you. I hate the sound but I can deal with it. But I don't want you to like be cooking while everyone listening is like that poor girl is baking in that room and he's not telling her that it didn't know it's

Elle 25:48
okay. It's 97 outside but it's 92 or not 9272 inside so I think it might be the ceiling fan. Let me get that

Scott Benner 25:58
okay

Unknown Speaker 26:07
that work

Scott Benner 26:10
where'd you go? I'm listening. Oh no. Okay, still the hair it's fascinating. It's the microphone I guess. Because when you walk away from the mic it's not as soon as you walk away from the mic and stuff. Is your computer is your phone your your computer

Unknown Speaker 26:28
I don't wear my phone. No, no.

Scott Benner 26:31
All right. When you hear this back you're gonna test yourself see there it is. Wait, it's gone. Now it's back. What happens and when you're talking it still happens to just say the same word over and over again for a second coffee still there and then when you move away from the computer so what happens if you just move your entire body six inches from the

Unknown Speaker 27:01
coffee coffee coffee

Scott Benner 27:05
I have no idea what's going on. It's interesting. It's going it's going What does it sound like? Alright, let's play a game oh dear. Feels like like I want to say almost like a windmills running behind you. Or

Elle 27:26
I mean the computer fan is going

Scott Benner 27:29
now. God could that be it? Is it the computer or the computer fan? What is that? I can just I can tell

Unknown Speaker 27:37
I don't even know where it is

Unknown Speaker 27:44
now the dogs making noise

Scott Benner 27:45
don't worry I'm having a great time by the way I bet

I don't know right well then we're gonna have to let it go.

Unknown Speaker 28:03
I'm sorry. Sorry.

Elle 28:07
I almost like went out and bought a new microphone for this because I knew that there was going to be sorry,

Scott Benner 28:12
my microphone. I think it's definitely the computer.

Elle 28:15
Well right but if the headset could work I would just take it upstairs and be alone in my room.

Scott Benner 28:20
Oh, but don't worry about what you don't think the sounds in that room though. Oh no. All right. Scale louder. What is that? Refrigerator I can't turn my refrigerator it might be the refrigerator walk away from the refrigerator. Is the computer like

Elle 28:46
computers plugged in because it's so old and crappy that it's going to die if I don't keep it plugged in.

Scott Benner 28:50
Interesting. It definitely could be the refrigerator

Unknown Speaker 28:56
I can't move the refrigerator I'm sorry yeah,

Scott Benner 28:58
let's really you could let's think about

Elle 29:01
all my insulin would just sit there

Scott Benner 29:03
and Dolly and an extension cord I think we could have this straightened up pretty quickly to stop now his refrigerator not running anymore. Right there it is. often does your refrigerator run for by the way?

Unknown Speaker 29:19
I don't know it's 97 degrees outside and I turn the air

Scott Benner 29:22
probably more when it goes through the air.

Unknown Speaker 29:25
No, that's okay. I'll be alright

Scott Benner 29:32
alright, I'm not giving up I'm not I won't give I would like you to move out of the way you said that the spell or the rust belt or what do they call that? There? I am. Hi Well, what part what belt is Iowa in?

Elle 29:44
Probably the Bible Belt. I don't know. That's the only one I've heard it referred to.

Scott Benner 29:50
I just Googled Iowa belt but now I'm just looking at belts that

Unknown Speaker 29:56
go back to Corgi butts.

Scott Benner 29:58
No, we're done with that. All right. Okay, so fascinating thing that you just said, like an hour ago that you're that he was so skinny that you started thinking his knees looked large. Mm hmm. Yeah. May I tell you that we used to think that my son's ears were big. But then we realized his head was small, and his ears were the regular size.

Unknown Speaker 30:22
Yeah, that I mean, that matches that's,

Scott Benner 30:25
and the way we did that was by measuring everyone's ears in the house, instead of by just measuring his head probably would have been the way to go. But looking back on it now, is a bit of a faux pas. So we measured everyone's ears and his ears were the same as everyone else's. And we were like, Oh my God, we've always thought you had really big ears. And then we realized like he wears a smaller hat. Like he's like a seven and a quarter, or sometimes seven, an eighth or something like that. And we're like, Oh, your ears to the right size. And this happened to you. The legs. Were getting so skinny that the knees seem big. Yeah. How long do you think this was going on for?

Unknown Speaker 31:02
Oh, months.

Elle 31:05
I went back through on my like my facebook albums and looked at pictures of him, because I organized them by date. And the last picture that I can look at him and go, that's a kid that probably doesn't have diabetes is March of 2020. And he was diagnosed in August,

Scott Benner 31:24
March, April, May, June. Oh my gosh. Was he okay?

Elle 31:29
Yeah, he was okay. I really think and I've talked to us in the chronologist about this. I really think that his activity level kept him alive. Because that kid runs and runs and runs and does not stop. And when he runs his blood sugar goes down.

Scott Benner 31:50
Well, okay, so you think he was kind of managing it off himself? Do you think there was any kind of looking back any kind of honeymoon whatsoever helping him?

Elle 31:57
No. I mean, well, I don't know how, I don't know how a honeymoon would work before diagnosis. Because I mean, I wasn't giving him insulin. So I don't I don't know how that work

Scott Benner 32:08
would be it would just be if he was getting help, and then not getting help from his, you know, from his pancreas. So it was kind of jumping back and forth.

Elle 32:15
I mean, maybe I don't really know.

Unknown Speaker 32:20
It's hard to

Elle 32:22
guess that back when he was. You know, just yeah. Not diagnosed and having all these symptoms, but I don't know what he did that day.

Scott Benner 32:34
You know, the joke where someone calls and says, Hello, and you don't know who they are. And you go Hello. And they say Hi, my name is Scott. I was calling to find out if your refrigerators running. And then you go running. It is like oh, you should go catch it.

Unknown Speaker 32:53
The refrigerator turned off so it's not the refrigerator.

Scott Benner 32:57
I'm not fascinated by what's making noise and you're

Unknown Speaker 33:00
like a Ghost Adventures got me the computer. That's the only thing I can hear

Scott Benner 33:04
turn off the computer and see if I can still hear

Elle 33:09
something under it. Like I could put like a What do you mean hello or something under it? Really? That would do something? Maybe Maybe it's like rattling too much on the table.

Scott Benner 33:19
You have a computer that rattles

Elle 33:21
I mean the fan you know like maybe the fan is just

Scott Benner 33:24
I'm worried about all of you people listening now. Now I'm not just worrying about all you people have rattling computers. Do you want me to get a pillow? I mean, just lift it up off the table real quick and see what happens. I did it did change its computer. Slider now.

Unknown Speaker 33:47
Let me get

Scott Benner 33:48
I'm gonna need a corgi by the time this is over.

Unknown Speaker 33:54
Everybody my daughter's animal,

Scott Benner 34:00
I can feel my heart rate going down. I don't know what you did, but it's better.

Elle 34:03
I tilted the computer and put a stuffed animal under it. So that it's angled upward.

Scott Benner 34:11
It's different. It's lighter. So when you lifted it up, it was gone.

Elle 34:17
It's the computer Okay, of course it is. See, technology is out to get me. It's like it's not even malfunctioning. It's just Oh, I'm

Scott Benner 34:29
gonna have a stroke. I haven't felt what the last couple of weeks and this is not helping me. Don't be sorry. Actually, we should put my medical condition on the podcast so people can help me with it. You have a medical condition right hold on. We're gonna get back to your kid in the big news in a second. But here's what happened right? I feel like I got bit by something. So I'm like I'm in the lawn like my my mower has a problem. I'm on the ground fixing my mower. I know too famous to be fixing my lawnmower I agree to people gotta click on the links a little more in the show notes if you if you want Scott not to have to cut his own lawn, okay, so buy me a lot more. And by the way, don't buy me a lot more. I don't want that because the last time we joked about something like that, I got this amazing chair, I'm sitting in love, but I feel bad about. Okay, so, somewhere between my thumb and my forefinger, kind of on the meat of my hand, I get this lump, like the next day. And it looks like a bug bite. And I look at it, I think that's a bug bite. And it's hard and I touched, I guess I'll be fine. I don't care. There's a little itchy and take much of it. Next day, I wake up, there's another bump like that on like a finger on my hand, like my middle finger if I'm if I'm remembering, right? And I was like, well, that's weird. I must I got bitten twice. And then by the third day, there was one on my ring finger on my right hand, one of my middle finger one by my hand. And I started finding one like, in between my fingers somewhere else. I was like, what is happening? And they were super itchy. Oh, like, really, really bad. And now is the time where I decided how honest I'm going to be while I'm telling the story. And you know, got it everywhere. Gonna have to be honest. I guess we could bleep it out later. Don't you think?

Unknown Speaker 36:17
You got it everywhere.

Scott Benner 36:19
It started bothering me anywhere. Something touched me kind of lightly, where you'd get that kind of like, you know, like that initial like, response from your body. Like you can like, if you touch you know touched your arm, you're like, Oh, I'm touching my arm. I can feel it. So I would get it where anything was brushing me so my thighs would get itchy. I was wearing shorts. And then one day I'll it was my was my boss. And. And then and then one day I scratched them. Like just not even thinking like I was like that's an itch, scratch it. And then when I scratched them, then I just got this incredible response. And then it was very, very, very itchy. And it also moved around in other places near near the balls, but not the balls. And poison ivy.

Elle 37:07
Scott, do you have poison ivy?

Scott Benner 37:08
Do you want to hear the story? Oh, do you wanna jump in? And so and so don't know, I gotta save this. This is your fault, because your refrigerator noise your computer noise I gotta save this episode and tell people that my balls Ricci. And so as soon as I stopped touch, like, as soon as you stop scratching, it just dissipates. And it goes away. And I'm like, this is Chris Hogan having this crazy response, like so now I'm trying to live like not, you know, learn tighter underwear because I don't want anything to move. You know, like, I'm not touching my hand edits, I keep thinking it's a bug bite. I'm stronger than a bug bite, I'll be okay,

Unknown Speaker 37:48
a bug bite that moves from your hand. So for

Scott Benner 37:51
that can be that can be the name of the episode to a bug bite that moves in your hands. Not me. And so I wait three, four more days now. This I start getting tired in the afternoons to three o'clock in the afternoon, I'm getting wasted. And the itching is not going away. I said to my wife, I was like this is it. So what you've been wishing for, I'm dead. It's just happened and slow. She goes goes to go to urgent care. And I say no. What do I get an urgent care for? And I would wake up the next day, and there's a bump on my opposite hand. And I'm like, I'm gonna go to urgent care or go to urgent care. I'm sitting in the chairs. I know what you're thinking. Scott's too famous. That's good care. People don't click on the links. If you click on the links a little more of a guy come to the house. But right now I gotta go to urgent care. Okay, so I'm sitting in urgent care, this old man who had a bike accident came in, he was just one skinned body part. It was terrible, but older. And just like he's like, I'm fine. Like, I love that generation. He's like, it'll be fine. Like, excellent. So I get called back. The lady makes me weigh myself with my shoes on which I didn't appreciate very much. Then I go in the back. And this this down, there's I don't know, Pa maybe comes in. And it's a lady pa she's like in her mid late 30s. And she's like, what's going on? And I'm like, I'm so sorry. I gotta tell you this and I tell her and I'm showing her my hand. And there's these These hands are like lumps now it's not spreading. It's not poison ivy, just literally at these like these points. And I said and they're okay at the moment. But if I were to touch my, my business, like it would get very itchy too. And I said it if and if you actually issued it would like inflame and and then leaving it alone makes it go back again. And she's like, Tell me about that. So I started explaining that to her that I had to tell her that two nights prior two nights Good?

Day, it did work, by the way. But that's a scary thing to do, because I'm like, is this gonna burn? Or is it gonna? But I was in a situation where I was like, well, worst isn't gonna be worse. And so sorry. So she's just a pause. And I said, Please don't make me show you.

And she goes, she goes, I don't need to see them. And I took that as I don't want to see them. But she said, I don't need this. I think if I looked like Bradley Cooper, she'd be like, I need to see those. But fair enough, and like, you don't I mean, she'd be like, well, just let me look just to be just to be sure. Mr. Cooper, you know, and let me sit on the bench. I want to get down on that level. Like with me, she was like, no, no, it's okay. You could just You're fine. I let me look at your hand. So anyway, so she gives me the steroids. And then my pharmacist messes up writing the prescription on the bottle, because you know how hard that can be when you're a pharmacist. And they've got me taking three of these tablets twice a day. So I'm supposed apparently supposed to be apparently in the first three days, take two twice a day. But instead, I take three, you know, a few hours later, I go to bed, I take three more, I'm going to tell you four hours after I took the first time, these lumps on my hand, like you let air out of a tire. They were gone. And I was like, Huh, that's amazing. They just disappeared. And then little itchy. Next day. Not so bad. My hand didn't it anymore. And I was like, let me just see if nothing else edge like Greg said he had gone away. Third day I get up in the morning, I take these tablets. And I take a shower and I come down to Kelly and I'm like, I'm gonna have a heart attack. And she's like, what I'm like my heart's racing, I'm sweating in the shower. I'm like, something's like really wrong. And I'm and I take these, you know, the pills, and I shake them. And there's not many left. And I'm thinking, But this can't be right. Because this is supposed to last like a week. So I dump them out on the counter, I start doing my good synthesis, and I'm counting them and everything. And I'm like significantly short on these pills. So anyway, I go back to the pharmacist and I tell her you didn't give me enough pills. And then she goes, No, I gave you plenty. And then we realized that she'd written the wrong thing on the on the thing and I called the doctor doctors like, Is he alive? And I was like, Yeah, but he's fine. You know? So anyway, at this point, all the stiffness in my back that I live with pretty consistently is gone. Yeah, steroids will do that. My back feels great. My bumps are going off my hands my balls like I'm 20 years old, you know, they mean just terrific. And and then the story is ended. And from being honest with you, I still don't feel great. So this is probably you know, something really serious.

Unknown Speaker 43:22
You had poison ivy.

Scott Benner 43:24
Really? I do from my lawn? There's the poison ivy in my lawn.

Unknown Speaker 43:32
There might be

Scott Benner 43:33
I don't know it's an ivy makes you listen, I'm listening to you. You're counting on a dog to protect you from the man Well, I don't know if you know anything. So

Elle 43:41
I personally have never had poison ivy in my life.

Scott Benner 43:45
Can you give an advice for them

Elle 43:46
but everyone in my family will look at it well everyone except my dad. Everyone in my family can look at it and they're covered.

Scott Benner 43:54
Alright, so I did not have poison ivy I'm telling you for sure. How do you know because what a doctor looked at it I looked at it I know what poison ivy steroids

Unknown Speaker 44:01
which is what they would have done if you had

Scott Benner 44:04
no I was having like some sort of a systemic reaction to something. It didn't matter wherever I had this like no matter where you touch me I'd get itchy

Unknown Speaker 44:13
like your hands on your balls.

Scott Benner 44:15
One day I got in the shower and my eyebrows were itchy when the hot water hit my eyebrows I itchy eyebrows.

Elle 44:22
So I have had poison oak before and poison sumac and I don't know how personal you want to get but you've been talking about Go ahead man bit I've had my lady bits get poison something sumac I think and I thought I was going to pass out because I got a steroid and it worked. But it burned.

Scott Benner 44:52
Burning, burning for me.

Elle 44:55
I learned like I legit got like, tunnel vision I could et Cie couldn't hear was very close to passing out and it was screaming

Scott Benner 45:06
from the from the pain. That's what got you

Elle 45:10
from the shower when after I had taken this

Scott Benner 45:13
really interesting. Yeah, I'm just telling you I don't I something's not right still, like it's been over like I've been off the stories now three, four days and my back's a little stiff again. And I feel a little like, I don't know, I just feel a little off. I don't know.

Elle 45:33
I mean, you're on that many steroids it can make you feel off, I guess to

Scott Benner 45:38
I felt great on the steroids. The steroids?

Unknown Speaker 45:39
Of course you did anyone around you what's really like, what's his problem?

Scott Benner 45:43
The steroids may be considered like using like recreational drugs. I was like, Is this how people feel? This amazing. My back feels fine. I love more energy. Everything was good. Just a little sweaty. Like when I when I normally wouldn't be anywhere and get like super angry and hulk out on everyone. They're not steroids like that. They're prednisone, they're not going to steroids. Steroids suppress your immune system. Right. So I probably have like, some autoimmune thing.

Elle 46:12
I was just gonna say, but if you have an autoimmune disorder, and they're gonna make you go nuts,

Scott Benner 46:17
well, no, I mean, like they get they would give steroids for like, ra, right? They would give steroids for all kinds of stuff. Anyway, your big need kid you take him to the hospital eventually. 40 Man,

Elle 46:28
I did eventually take him to the hospital. I weighed him. And he had lost 10 pounds, which is

Scott Benner 46:35
why he was nine at the time. Yeah, that's a lot. Yeah. Okay. So now, so what? I mean, does he has diabetes? Ever? Enter your mind? Are you just like C so so you're taking them to the hospital?

Elle 46:51
Um, I had someone had suggested to me that he might have diabetes. But even looking at like, the the lists that you Google, I could easily write those off as like, well, of course he you know, is anxious. There's a global pandemic. Of course, he's eating a lot. He's always eaten a lot. He's drinking more water because we're telling him to drink more water, right. All the signs, I could easily point to something else and be like, No, it's not that because at the time, I did not know that type one was an autoimmune disorder. I knew it was sort of hereditary somehow. But I didn't know that it was auto immune. Okay. And after I weighed him, I went to our local drugstore and I bought a test kit with land sets. Or maybe I didn't buy Atlanta, I had to go back for something because I didn't realize it. It didn't all come together.

Scott Benner 47:52
But some of it but not all right. I

Elle 47:55
got like a meter and strips and a poker but I didn't have the land sets to put in the poker. So then we had a super high carb meal at lunch. And two hours later, I tested him and the first one said hi, and I was like, go wash your hands. And the second one said 300. Something. Stop it. So the second one said 300 something. And I knew that wasn't good. But I still didn't know that it was for sure. diabetes, because ironically enough, he'd had poison ivy the week before and had steroids. Like he'd gotten a shot at a walk in clinic for steroids. Like maybe two weeks, somewhere around there.

Scott Benner 48:43
Well, they probably helped him kept them a little jacked up. I'm telling you I've never felt better than I was on this. Meanwhile, I must have I probably have some rare disease now. Probably by like up like hyper nesis gravidarum or something like that. Did you say hyperemesis is that? What it is hyperemesis hyperemesis gravidarum? Is

Unknown Speaker 49:03
that what it is? That's, that's a pregnancy thing. It's

Scott Benner 49:06
not Oh, I just Googled rare disease real quick. And it said the first one that I saw.

Unknown Speaker 49:12
I had that so Wait,

Scott Benner 49:13
hold on. Stop. That can't be true.

Elle 49:18
Yeah, I had hyperemesis with my pregnancies. It's you can't have it. Sorry.

Scott Benner 49:23
hyperemesis for years to intractable vomiting during pregnancy that leads to weight loss. And you had that? Yeah. All right. Let's just be clear. First of all, this is the best episode I've ever done. Second, second, well, it's definitely the worst. But secondly, I Googled rare diseases while you were telling me about the kid. Yeah, clicked on a link because it said rare diseases. Then I spun the mouse. Like no lie, spun the mouse just down. And then I looked up. And I thought there's two words that sound funny when I think hilarious when I tell you it was a blast when I make this joke, I'm gonna say this because I'll mispronounce it. It'll be fun. The whole thing I almost meant with almost meant with muckle wells syndrome.

Unknown Speaker 50:14
I haven't heard about one, but I probably have it too. But instead

Scott Benner 50:17
I said, hyper misses, what is this hyper one? hyperemesis hyperemesis gravidarum? And you said I had that? Yep. Holy Hell, that's crazy. You should only have one thought in your head right now. I'm never getting pregnant again. What is muckle wells syndrome? That's the only thing you should be wondering right now. It's a form of cryo Perin associated periodic syndrome that is caused by a mutation in the C I A S one gene, and the increased activity of protein Cryer printed in the body. This leads to inflammatory damage throughout the body as well as several other symptoms, including the possibility of amyloid dosis. This is probably gonna end up being what I have.

Elle 51:10
I don't think I have I don't know what any of that means. But

Scott Benner 51:14
no one knows what it means. It's a rare, rare Genomics Institute. I can't believe it do. I just told you what it says how do you

Unknown Speaker 51:25
know if you have it?

Scott Benner 51:29
How's it diagnosed? Blood tests, degree of inflammation in the body

Unknown Speaker 51:35
inflammation. Got it.

Scott Benner 51:39
So got a patient may also undergo a cerebral spinal fluid analysis and audiogram a kidney biopsy or urine protein test. This is going to be so weird if somebody ends up having this that I know. Plus, I gotta start picking lottery numbers if that happens, because I've never put any effort. I can't believe you had the other thing.

Unknown Speaker 52:00
Me neither. All right. Okay. All right. It was not fun.

Scott Benner 52:04
Jesus it by the kilometer. He tests his blood, your blood sugar's high is the hospital. What did they do in the hospital for him?

Elle 52:11
Well, I tried to get him to go to the hospital. But I didn't know how to like, proceed after finding out that he had high blood sugar. I didn't know like, is this an emergency room. So I called Well, I talked to one of my friends. And she has a friend who has a kid with type one. And they recommended an endocrinologist. So I tried calling him but he works for the hospital to the University of Iowa. And I called them and they wanted to make an appointment for him in a month. I was like,

Scott Benner 52:53
already waited five months. So

Elle 52:56
I was like, I don't I don't think I can wait a month. And so they put me on hold for 45 minutes. And then they hung up on me.

And that again, that is my life like has not been disconnected while I'm talking to you so far.

So I called back and nobody answered. I was like, well, that's weird. Why would a hospital? Not answer? Yeah. So then I drove him to a semi local walk in clinic. And I had a two month old at the time. So I took her with me in a global pandemic, because I'm nursing her at the time, and I'm thinking we're probably going to stay overnight here. I made my baby. Yeah, she can eat. They did not like that. But they didn't send me away or anything. They immediately admitted him into the emergency room. And while we were pulling up pulling in, but we're walking into the emergency room, we see the ambulance pulling out. And we are rural Iowa, like there's only one ambulance. So they admitted him started him on a drip of some sort. I don't know what's going on at this point, because I'm just like, I know what diabetes is, but not a lot, right. And so three hours later, they decide they're going to transfer him. But they were calling around to multiple hospitals and all the hospitals are saying we are not admitting any patients right now. And I'm like, Is this because of COVID? Is this because he's like, he needs a PMT unit? Like what? Why? And somebody said there was a tornado in the city that you live in? I'm like, No, I don't think so. I would have known about that. Like, I was just there and my husband and my other children are still there. So they called to a hospital in Des Moines and Des Moines said no, they called Iowa City, Iowa City said no, they called Tom wha where I live. They said no. And finally, someone in Iowa City said fine, we'll take him. But the baby can't come. So I sent him in an ambulance. And I'm sitting here looking at my baby and my oldest and literally deciding, like, Who do I go with? Which was probably the hardest moment in the whole thing. I think it's the only time I actually cried. No. But I have an acquaintance friend, who's a nurse at the hospital that I was at. And she said, let your husband go. Because if you go, and you're with the baby, and if they don't let the baby in, you're gonna have to, like stay in a hotel, and you're gonna miss a lot. Because when the doctor is there, he's there. Like, you're not going to have him on your schedule. You need to be on his and the baby doesn't care. So my husband drove up separately from the ambulance, and I drove back home to pick up the other kids and stay home with the baby and the other two. And when he got to Iowa City, it was dark, like black because there were no streetlights there were no stoplights there. There were there was no electricity anywhere because of the tornado. It wasn't a tornado. What was it? It was a juried show. Oh, wait,

Scott Benner 56:34
hold on. What up to Rachel, is that a disease I might have?

Elle 56:40
It's basically a land hurricane. With like, I think it was 80 mile an hour winds straightens. So I'm thankful that I didn't send him in that first ambulance because he probably would have been right in the middle of it.

Scott Benner 56:56
How often does that happen? Never. A direct show is a widespread, long live straight line windstorm that is associated with fast moving groups of severe thunderstorms. Wow. Can cause hurricane force winds tornadoes, heavy rains and flash floods. Yeah, and not for nothing. You live in the same town as radar O'Reilly from Yes, yeah. Did you know the man? Well, he didn't recently passed away the man that that they base this character on recently? Yes. Donald Schaefer. Mr. Schaefer was born in 1929. He died in 2022. He was the inspiration for a character on mash called radar or Riley who was from a tumble Iowa. Yep. You learn so much on this podcast. That's all and the thing about the windy thing that Theresa or something? She's again, why do you live there?

Elle 57:58
Well, a few reasons. But for the math. Did you look that up to know that I just love math capital of the world?

Scott Benner 58:08
No, it isn't right. No. You're making that up. You're being fun. No, I'm not. I'm not sorry. I didn't make fun of that.

Unknown Speaker 58:17
Okay, clean of meth is from a tumbler.

Scott Benner 58:20
The queen of meth is from a tumbler? Yeah. What is the Swiss she calls herself it's Tom Arnold sister. All right. Oh, no kidding. In that documentary she made they made the documentary about her. Well, I guess if you're gonna be famous for something that'd be okay. Queen of meth made $200,000 a week. Meet Tom Arnold sister Tom Arnold, the man who used to be married to Roseanne Barr.

Elle 58:49
Yes. They used to live in Eldon, which is I think it's all done. Maybe it was agency, which is like five miles outside of Ottawa maze. And maybe

Scott Benner 59:00
he's very good friends with Arnold Schwarzenegger. I believe we see these things. I know. That's odd. You need to know the other odd things are you know,

Elle 59:09
I mean, let me know everything about Tom Arnold is probably a little odd.

Scott Benner 59:13
A lot. A lot. A lot of weird energy, that's for sure. All right. Okay. So this poor kid almost gets blown away, but has diabetes instead. And, and how and so you're you ended up sending your husband with him to the hospital? Sorry.

Unknown Speaker 59:28
He followed him to the hospital like yeah, okay.

Scott Benner 59:31
All right. And so you stayed did you go home with the babies like because it's all COVID D. So what do you do?

Elle 59:36
I went home and stayed there and picked up my other two from their grandparents house. And we stayed home and I learned a lot via zoom.

Scott Benner 59:47
Wow. How long was he in the hospital?

Elle 59:50
I think it was. I've gone back and forth. I cannot remember if it was like three days, two nights.

Scott Benner 59:58
All right. Night They didn't rush him out and they needed to bring his blood sugar down and do that slowly because he was really in trouble. I imagine.

Elle 1:00:06
Yeah, that by the time I got off pulled when they hung up on me, we tested him again. It was 500 something.

Scott Benner 1:00:12
Well, what do you know? What is a once he was when they checked?

Unknown Speaker 1:00:16
15.1? Yeah, well,

Scott Benner 1:00:21
insulin pens. And any talk of glucose monitors, do you have them now?

Elle 1:00:27
So he had to prove to insurance that he had diabetes by testing three times or more a day, for a month, and then he got

Scott Benner 1:00:37
a Dexcom. Okay, so they didn't take the diagnosis of the hospital seriously.

Elle 1:00:42
I don't understand insurance. Like I don't understand how some person in a cubicle gets to decide medical care. Isn't that practicing without a license?

Scott Benner 1:00:51
Yeah, it's a little weird. How did you find the overall education?

Elle 1:00:58
Excellent. Honestly, Nurse Laurie, shout out. I asked her permission to say her name.

Scott Benner 1:01:07
Did you ask her permission to say her name in the middle of episode or someone's had ball? 16?

Elle 1:01:13
I didn't specify but yeah, I think she knows.

Scott Benner 1:01:17
She hears this.

Elle 1:01:21
She she called me like, every other day for two weeks. And then it was like every three days for another two weeks. And then it was once a week and then it was and she I don't know. She's excellent. That's wonderful. She's just absolutely excellent. She listened to me talk about things that weren't even diabetes related just my own

angst at No, I

Scott Benner 1:01:51
would listen to you talk forever. So you know, well, I could probably talk forever. Yeah, you and your flame vagina and this for kids and all the other stuff. There's plenty here to go into. I don't even know we need to talk about this diabetes, but it just just because people tuned in. How's the kid doing? Just a couple years doing

Elle 1:02:08
really well? Yeah. But he like his agency has not been over 5.9 Since diagnosis.

Scott Benner 1:02:14
Well, good for you. How are you accomplishing that?

Unknown Speaker 1:02:18
You? Oh, sorry.

Unknown Speaker 1:02:21
There's no reason Lori.

Scott Benner 1:02:23
There's no reason I can Laurie but go ahead. Yeah.

Elle 1:02:26
Well, Nurse Lori can't call me every day. But I can listen to the podcast every day. She has other people to go save.

Scott Benner 1:02:37
Yeah, she's super lady. She's calling everybody on the phone. Do you ever think about that? Once she's talking to you like, Oh, I'm probably not the only person she does this with? Yes, I

Elle 1:02:45
do. Think about that. And that was trying to be very respectful over time. But again, I can talk forever. So sorry, Laurie.

Scott Benner 1:02:52
So obviously, you get a CGM a month in. Are you still doing pens? You can check me.

Elle 1:02:58
He did pens until it was about six months. I think it was March of 21.

Scott Benner 1:03:06
You go to a pump then after that? Yeah. Okay. Medtronic, no, no, say it like that their sponsors of the program. Oh, are they in pen from Medtronic? diabetes?

Elle 1:03:18
Well, we tried to get the in pen. But evidently the week. Again, this was my luck. The week that we got it approved, our insurance decided that they weren't covering it anymore. Or there was a grant or something. Something fell through. It was approved, but then we couldn't get it without spending $800 to get the device.

Scott Benner 1:03:39
Yeah, that definitely shouldn't be I think I think you can get it. Like, let me just say this. You know, I think there's you know, you have to check, there's fine print and stuff. But I think mostly it's like 35 bucks for people. So definitely don't pay $800 Well,

Elle 1:03:52
I didn't because I knew we wanted to get on a pump. And I didn't see the sense in going through the hassle of getting on something that we weren't going to permanently use. Sure. Not that it's a bad thing. It sounds amazing. But,

Scott Benner 1:04:07
ya know, it's a it's a great insult. But yeah, I understand you're not wanting to do that. So, okay, so what what did Laurie tell you that helps you keep an A once the under six with a nine year old

Elle 1:04:20
Pre-Bolus. Check as often as you feel like checking. They did go over. So I don't know if this sounds a little braggy. But so in 2019 My husband and I did keto, which meant that I already knew how to count carbs pretty well. And so they gave Lorie and there are other members of the team, but I think sorry. Other people that I didn't ask permission to say names of I I usually defer to Laurie, just because we got along well, she gave, like resources, where I could look up carbs of things quickly. And I could like put in a recipe and it'll tell me the carbs in it. And there was a big booklet that we did secondary education on. So that was like sick day and stuff like that. But University of Iowa is they are with it. Yeah, they've got it going on.

Scott Benner 1:05:35
Talk for a while of me giving a talk at the University of Iowa. And then it just I think COVID happened, and then it just people stopped talking about so. But yeah, apparently there's a large type one population in the student body at that school. Oh, yeah. That's crazy to be okay. So Pre-Bolus count your carbs do the right thing. Pay attention to the blood sugar sounds like what Laurie was telling you? And then you did it like, but what made you like so many people don't? Like, follow through, like, what made you follow through.

Elle 1:06:11
I'm a rule follower. Just am. Oh, gosh. And I want to make sure that I only share my experience. So this is going to be kind of complicated to talk about. Both of my husband's goodness dogs. Both of my dog. She's chasing the cat again. Oh, I put her outside. Then she saw my children drive away and she was crying outside. So I figured that would be noisy enough, but it's fine. So both of my husband's parents have type one. And the education that they have received is not the standards of the University of Iowa. Yes. I'm just gonna say that much. So seeing and hearing the information that they received in action makes me sad and angry at any doctor that thinks they know something, and is giving advice when they don't really know what they're talking about.

Scott Benner 1:07:35
Okay. How both of his parents have type one. Yeah.

Unknown Speaker 1:07:43
For a long time. Still missed it. Yeah.

Scott Benner 1:07:46
Yeah. And he didn't see it either. He didn't know either. Any other autoimmune in the family?

Elle 1:07:51
Oh, my gosh, so many. My mom has rheumatoid arthritis. She has hypothyroidism. She has bipolar disorder, which I know. It's not an autoimmune, but you say that there's a connection. And then my husband's mom has type one. She's had type one for 50 years. His dad has had type one since the 90s. Early 90s. I think he was was right before. No, it wouldn't have been early 90s It was right before I met him. So I'm gonna say he was 45 ish. Okay. But he was diagnosed as type two until he got cancer. And then they did a C peptide when he had cancer. And found out Oh, it's type one. Okay, so you'll have to Google it. It's E H, E. And I'd have it's like 13 syllables.

E. H. E. N E I'm surprised students say that one earlier when you search.

Scott Benner 1:08:58
Wow, I'm not gonna be able to say that.

Elle 1:09:01
Yeah. If you tell me the first syllable, I can probably tell it that the heliad epithelioid him angioma isn't right but I get them all

Scott Benner 1:09:10
a man God. Don't feed me Allah. HEMANGIO e n d o t h e l i o m a is the second word. That's crazy. rare cancer, the growth in the cells that make up the blood vessels most commonly seen in the liver, lungs and bones. Okay, and he did he kick did he beat that?

Elle 1:09:39
It's not really curable. Okay. He's had some things removed from his liver and his lungs.

Scott Benner 1:09:46
I'm sorry. Okay, and so there's again I say I don't know what you autoimmune people do like what signal you put out into the world to attract other autoimmune people but like it's a fascinating it's on both sides of the family like add that. I didn't even list all of them. But yeah, don't keep going. What do you got more?

Elle 1:10:05
Has my husband's mom has hypothyroidism, and then my husband's dad. So my husband's aunt also has type one, but it's, they call her type two. And I'm, I don't know how to tell someone I think you need to be tested for. Like, she's, you know, almost 70 years old now. And she's been treating it this way. But I'm convinced it's type one. And his other sister has MS. And I feel like I'm forgetting something. Oh, both of my husband's grandparents had pancreatic cancer. So I don't know if that's related.

Scott Benner 1:10:47
You know, this is more information than anybody should say probably. But everyone's passed on. So my friend Mike, his mom had pancreatic cancer.

Unknown Speaker 1:10:58
I remember you saying that?

Scott Benner 1:11:01
Interesting. All right. Well, you should probably do some math.

Elle 1:11:08
I don't think so. Sure. I'm pretty sure. I don't think that would help the situation any? No, I

Scott Benner 1:11:16
mean, I don't think it would help anything. But I mean, you're in one of those rare situations. I'm not certain about hurting either. So sorry. That's, that's really terrible. Least get yourself a new computer. So obviously, I said a ton of stuff that was very helpful to the kid. And he's doing great now probably going to name your next Corgi after me or something like that. And you consider that, did you? You didn't do it, though. So it doesn't get in. She's the girl.

And it's so much you pay homage where you pay that much. That's all. Is it? Oh my gosh. How do you set? Some people say homage? And I'm 100? I don't say that. I'm 100%. Sure that's not right.

Elle 1:12:02
I'm probably more likely to pronounce that. Oh, long. All right. Oh, my

Scott Benner 1:12:07
God. Alright. So is there anything that we haven't talked about that you want to talk about?

Elle 1:12:14
The exercise thing I did want to pick your brain on?

Scott Benner 1:12:17
Okay. And but let me ask this question. First. How many things that we talked about that you didn't want to talk about? All of

Elle 1:12:24
them? Oh, testicles weren't on the list. In my mind? No,

Scott Benner 1:12:29
I didn't think they were either. But then the computer was loud. And I felt I felt obligated to give back. You don't I mean? I really did. I was like, I need to put something in here. I don't want people to be like, Oh my God, it was a refrigerator. But it wasn't it was a computer. I mean, there's only so much that you can take, you know, say so. Okay, so what you want to talk about exercise and insulin or something. Go ahead. What's your question? So

Elle 1:12:54
he has been diagnosed for almost two years. I don't think he had a honeymoon at all. If you did, he exhausted it before diagnosed. I

Scott Benner 1:13:02
think you used it up before you were diagnosed. But God.

Elle 1:13:05
So key, I'll give an example. In May, he went with his birth his buddy for a birthday party. They went to the largest skate park in the United States, which is in Des Moines. It's about an hour away from where his buddy lives. So they were in the car for a little bit. But he was writing about 70 Before we left, he didn't really go up at all for the car ride. And then we had Chick fil A, which is I'm guessing he had 120 carbs. But then he had a full sugar soda, too. So I'm gonna say 150 carbs. Ish. I did not give him any insulin for that. I did. I didn't even have his pump on him when he was eating that meal because I did not want any auto boluses he's on to slam Yeah. So we took the pump off for the skatepark because I do not want to busted pump. And I didn't really want him getting insulin while he was skating. And he still had to treat three loads.

Scott Benner 1:14:18
Still just like skateboarding. How long did he do it for?

Elle 1:14:21
He was on a scooter for about three hours. Sounds like a long time. I mean, it was a long time. Yeah. But this kid drops like a rock with any exercise. Right? And I just like I've heard you talk about bolusing Arden during a softball game and I'm like, my kid would not be able to play at all.

Scott Benner 1:14:43
So I think it's I mean, there's different impacts right so softballs, not scootering scootering for three hours, so a lot of effort. If you ever watch a softball game, there's a ton of standing around. So you know they're standing around. You could strike out three times and never even have to run to first base. You You know what I mean? So they're standing around, there's the heat. There's then dehydration that comes along with it. So if you're at the skate park is indoor outdoor, it was outdoor, hot or not hot.

Elle 1:15:13
I would say it's warm. It wasn't cold by any means. I wouldn't say it's 97 degrees like today or anything

Scott Benner 1:15:19
ton of effort for three hours straight. A lot of aerobic exercise. I can see. I mean, you described I mean, I could see that not needing insulin for certain that makes sense. Was there a big Bolus prior to the skatepark?

Elle 1:15:37
I mean, he had breakfast. But that was probably four or five hours before the park.

Scott Benner 1:15:46
You actually got that? But yeah, like a nice yard like 70 Something on your way to the skate park? Yeah. So you, obviously you killed breakfast really well. And then you will get that by himself. Wow. That's impressive. And then he went into the right into the activity. So you pop the pump off as you started at the skate park.

Elle 1:16:03
We took the pump off before he ate Chick fil A.

Scott Benner 1:16:06
After this, wait, wait, hold on. The Chick fil A was before skating?

Elle 1:16:10
Yeah. Before skating, no insulin.

Scott Benner 1:16:15
But wait. So the Chick fil A was without insulin before the activity? So that it sounds like you. I mean, I mean, the best I could guess is that he maybe over Bolus the breakfast

Unknown Speaker 1:16:28
hours before.

Scott Benner 1:16:30
I mean, it doesn't make a lot of sense

Elle 1:16:32
that it's it's not just this time, either. I mean, it happens every time you go. It's every time he exercises like aerobic activity. Wow. And I just I don't know, he went to camp last week. And they reduce his basil, I think by 50%. And I mean, he ran higher at Camp than he does at home. But I don't know how to replicate that at home to get a good idea of how much to give him because what ends up happening. So we we went to a fourth of July party, the third. And we had it in that camp profile, because I wanted to see like it being the pump. I wanted to see if it would work for us at home. And it did. Like he played volleyball after he had a meal. And we did Bolus for the meal. But it was a reduced Bolus. He had his basil reduced for hours beforehand. And he played volleyball and he had to sit out the last round because I just couldn't get it to come up. But then when we got home, so like three hours later, tea skyrocketed.

Scott Benner 1:17:54
Well, I have to admit, from your explanation, I don't know exactly what to say. Yeah. I mean, if you telling me that you ate before the skate part is the part of the skate park that throws me off. Like I mean, the only thing that makes sense to me is that breakfast somehow impacted it. Because otherwise, I mean adrenaline. Was he excited to go to the skate park? I mean, something he does, right. It's not like some great treat or something like

Elle 1:18:25
well, it was a birthday party. We don't often go to Des Moines to go to the skate park. He plays on his scooter weekly. It's not right. And when he does it at home, he doesn't drop like that. Oh, he does. He drops any time any any exercise. Like he has a Wednesday night activity that he does during the school year. And I have his pump and exercise mode which you know, raises the target but still gives many boluses which I hate we put we reduce his Basal re hours beforehand and then we have a low carb meal so that he doesn't take insulin for it. And it sometimes work interesting problem with that is that it's so super spontaneous and unpredictable that I don't know when he's gonna be sitting me playing but that's a whole other thing.

Scott Benner 1:19:19
So I don't know anything about this. I'm just like, kicking around like I don't I don't know is that could that be not adrenal though, right. Don't think that's I don't know if that's for a person with type one where like hypo, you can get like hypoglycemic from like adrenal fatigue, but I don't know if that's to do with diabetes, or if that's just a thing people experience side of it, sometimes. I don't know. But I mean, it does sound it's what I can say is it sounds like egregious. It sounds crazy. You know, like those crazy hours and hours without insulin. Um, I mean, I do, I'm imagining a lot of activity with the with the scootering, obviously, but

Elle 1:20:08
Peter gets the same result like he went to a place where he played Ultimate Frisbee. And he, he did have some insulin at lunchtime, but it was like 30% of what I would have given him a home. And then it was still two hours before he played and it's Ultimate Frisbee like he's

Scott Benner 1:20:31
running around and sprinting all over the place.

Elle 1:20:35
Right. But I don't want to call it a bad name. His his pump gave him an auto Bolus. Okay, of point 118, which I know for a lot of people is a lot but for my kid is nothing. Like he uses like 75 units daily 2.118 dropped him from 210 with fruit snack to 90 straight down in 15 minutes.

Scott Benner 1:21:05
Yeah, I mean, that's so doesn't sound like that the insulin could do that. But that's like, like, I feel like there has to be something else at play. Have you asked the doctor about it? i

Elle 1:21:17
My CTE nurse, Laurie? Laurie? She said it's just a Remi thing.

Scott Benner 1:21:23
something specific to him? Yeah.

Elle 1:21:28
I was. I was in that conversation asking about different types of insulin. But I don't know. I don't know, as they would be any different.

Scott Benner 1:21:40
Like switching a brand of insulin, right? Yeah, I mean, I have to be honest, I'm not sure. You No, I'm sorry. It's it's it's out of the ordinary enough that I don't know what to say.

Elle 1:21:56
I figured I'd give it a shot. Because I don't know. Too many people that manage diabetes.

Scott Benner 1:22:04
Do you try? Have you ever tried giving him like a protein before? Oh, yeah.

Elle 1:22:09
I mean, the Chick fil A was a chicken sandwich. But yeah, we use peanut butter. We like the the meals that we give him before his Wednesday night things are very heavy protein, very heavy fat. Okay. And 15 carbs or less.

Scott Benner 1:22:25
In a normal situation, that meal would cause them you really Bolus for? Yeah. But not when he's active.

Elle 1:22:35
If he's sitting, he needs insulin, like, needs. Right? Mom's going crazy. He's grown six inches since diagnosis. And like that's, he definitely needs insulin. It's not that his Basal is too high, or that his ratios are off. It's the activities specifically,

Scott Benner 1:22:58
have you tried having a conversation in the Facebook group about it?

Elle 1:23:02
Um, I think so. But I don't remember for sure.

Scott Benner 1:23:06
Yeah. Well, you know, if you had an answer you would have you would remember the answer a lot of times

Elle 1:23:09
I, I hold back because I feel like I over explain everything, especially in a group like that, where I, I tried to condense and then they need more information. So I ended up like, well, let me start back when I was born.

Scott Benner 1:23:27
Yeah, that's not helpful. What about, like runners goo and stuff like that? Have you ever tried that? I don't know what that is like that. Like, it's just like paste that runners used to like, keep their blood sugar up while they're running. Like, I'm wondering if it's, I mean, he doesn't want I don't want him to be eating something constantly. But trying to decide like it has it ever been a real problem for you? Are you able to stay on top of it? For the most part,

Elle 1:23:52
I'm there. I've never had to use his G voc. But I've had it out before

Scott Benner 1:24:01
dropping so fast. Yeah.

Elle 1:24:05
And honestly, I think those situations were because he had insulin on board and like, he went and jumped on the trampoline, like, well, that's obviously not gonna work well.

Scott Benner 1:24:20
I feel good. I'm sorry.

Elle 1:24:22
I feel like he's missing out on the activities that he wants to participate in because he's sitting on the side drinking juice. And that's my biggest concern, I guess, for a 12 year old boy to have to be like, sorry, I have to sit down and drink a juice box and his friends don't really understand that and then he doesn't get invited next time.

Scott Benner 1:24:47
What happens if he just like drinks Gatorade throughout the whole process?

Elle 1:24:52
That's what he was doing at the skate park, but he still had to have two packs of fruit snacks. and

Scott Benner 1:25:02
it had been hours since he had insulin, at least five and there was food in there.

Elle 1:25:08
Yeah, a whole meal. Like 150 carbs or more I don't even know I didn't count it. It was Chick fil A fries, chicken sandwich and Dr. Pepper.

Scott Benner 1:25:24
And you didn't Bolus for it didn't Bolus at all. And then he still tried to get low later

Elle 1:25:29
didn't even have basil on like, I turned his pump to we have a zero profile setup, so that it doesn't beep all the time. But it still doesn't give him any insulin. I wonder

Scott Benner 1:25:39
if away from this activity. He needs so much insulin that even though you haven't had it for a few hours, once you add the activity, it just gets sped up so much.

Unknown Speaker 1:25:52
I don't know what that means. I mean,

Scott Benner 1:25:54
I mean, like, what's his Basal rate? Like forget this activity a second for I get a normal situation? What's his Basal rate an hour?

Elle 1:26:01
Like 1.3? Ish? What's he weigh? 135.

Scott Benner 1:26:07
That seemed crazy. And but it also it does seem a little heavy, but it doesn't seem crazy. I don't mean heavy. Like it's wrong. I mean, like, like, there's a need there. So

Elle 1:26:20
his Basal is cranked at night, not cranked but higher at night because of growth hormones and activity. And then, like during the school year, we have a higher Basal rate during school hours because we sit more. Yeah, but then, like, from about lunch? So about 11 Until gonna say 830. It's less. So I don't I don't think so. Oh, wait, I have a picture. I forgot I took pictures before I send them to camp in case they changed. Let me find. Okay, so midnight, until 11am is 1.47 an hour. And then 11 until five is 1.37. And then five, until 830 is 1.5. And then 830. Until I guess it is right. 10 is 1.71. And then I think it goes back. It's a little less between 10. And midnight, just because I don't usually give too many corrections. And honestly, that's the only reason I haven't changed. And this is if I give

Scott Benner 1:27:32
this is working for you like his keeps his a onesie in the fives. But you're having lows around activity, but not lows that other times, right. I mean, I listen, I I do wonder after after you go over those numbers, like what would happen if forget, like a couple of hours prior to activity, but what if like, you made a concerted effort one day, you know, like, we're gonna go to the skate park at four o'clock in the afternoon. Like, what if you got up in the morning and cut the Basal wave down? Like, first thing in the morning? Yeah, like the point nine and let it be like that for, like 6789 hours before he went there. I'd be interested to see what would happen after that.

Elle 1:28:18
I just I am willing to do that. My concern is what about the nine hours leading up to it?

Scott Benner 1:28:29
What would happen? Do you think he did that?

Elle 1:28:32
I think he would be in the two hundreds all the whole day. And then like, if I don't correct, he'll stay in the two hundreds. But if I correct it, then I'll have insulin on board.

Scott Benner 1:28:46
Yeah, then I would actually have to add to that. I guess you would want to go with a lower carb lifestyle that day just to keep Bolus down just to see what what happened. Because what I'm trying to get at is, I wonder if you need these heavy boluses because he's a 12 year old kid. And then there's so much insulin happening like you don't I mean, like it sounds like he's two people. It sounds like he's Yeah, like, right. He's just sitting around kid, right? And then all the sudden he's an Olympic skater kid.

Elle 1:29:16
Right, right. Right. How do I know which one he is going to be that day? Well, does

Scott Benner 1:29:20
it always happen with a skate park?

Elle 1:29:22
It always happens with any activity, but 12 year old boys are not known for planning out their activity.

Scott Benner 1:29:28
Right now. I don't have an answer to but what it sounds like to me is that you're managing one body style, one, one impact, and then suddenly, you're switching to a significantly different impact. Yeah,

Elle 1:29:43
that's exactly what's happening. Right? I just don't have a whole day to prepare for it. Because if his buddy comes over and wants to go ride scooters, I can't be like, come back tomorrow.

Scott Benner 1:29:58
We'll plan this a lot sooner. There has to be some sort of a level of carbs that you can put in him that a hold this up because it sounds like he got closed. He did the Chick fil A and then he did a couple of packets of gummies. And so 150 carbs. I know it's a lot. I don't know how to I'm not I'm trust me. I'm not saying it's makes a lot of sense. I'm just saying that like talking it through this is this is what I'm imagining from your conversation. So I'm not sure I did that sound like it sucks, though. I'm sorry for that.

Elle 1:30:33
I just hate that he misses out on things. That's, that's the only I mean,

Scott Benner 1:30:37
is he really missing out? Or is he have to stop once in a while

Elle 1:30:42
his friends have stopped inviting him places. Because he's drinking juice, because he has to sit. And they don't want to wait on it.

Scott Benner 1:30:51
How long does the deficit toys okay?

Elle 1:30:54
Just depends on what they were doing. And how long. Like if we're dealing with an insulin board situation or a just, you know, like they at the skate park. We we knew that was coming a month ahead. And we prepared for it. So he just ate some gummies and kept skating right. And if I'm there, like I can tell him hey, you're 120 Eat some fruit snacks, and it'll bring you back up. But if I'm not there, and he's just hanging out with his friends, like, at the playground or whatever. I'm not there to tell him eat fruit snacks when he's 120. And his pump doesn't alert him when he's 120. And Dexcom doesn't even go that high.

Scott Benner 1:31:33
So he doesn't find out till he's lower and then it's too late that he's got to wait and wait and all that stuff. Yep. Yeah. I'm sorry. That sucks. Have you tried? We tried hiring Jenny for a couple of minutes to see which

Elle 1:31:52
I would love to but I can't afford a new computer.

Scott Benner 1:31:59
We she'll talk to you on the phone.

Elle 1:32:02
What I mean is, I think Jenny's probably out of my price range.

Scott Benner 1:32:06
I honestly, Can I be honest with you. This is gonna sound crazy. I have no idea how much Jenny charges? I honestly don't know. But I mean. I mean, it's a big deal. And it's got a big impact on him. So maybe no, it is. worries, no help.

Unknown Speaker 1:32:25
I'm just gonna still gotta feed the kids too.

Scott Benner 1:32:27
Well, not really. I mean, there's four of them. Right? They dog if something goes sideways. All right. I gotta go. I actually have a call. So

Unknown Speaker 1:32:39
hopefully it goes better than

Scott Benner 1:32:42
this guy is gonna know how to use his computer, which is a step in the right direction. I really did. I honestly did appreciate this conversation a lot. I thank you very much. I just I actually have to give them a shout out. I have a call with people from G voc and a little bit and I have I have told them they definitely know what they're talking about. I have to go be an adult. So I really appreciate this. We hold on one second for me. Yeah, thanks.

I want to thank L for coming on the show. And in a second. I'm going to tell you all the different ideas I had for naming this episode. Anyway, thank you l Thank you better help for sponsoring this episode better. help.com forward slash juice box saves you 10% off your first month of therapy. And thank you Omni pod, get your Omni pod dash or Omni pod five at my link Omni pod.com forward slash juicebox. That's pretty much it. I want to thank you so much for listening. Remind you that there are links in the show notes of your podcast player and at juicebox podcast.com. To all the sponsors. When you click on the links you're supporting the show. Don't forget to go to T one D exchange.org. Forward slash juice box fill out the survey. And of course you can get 35% off at cozier calm with the offer code juice box. Now I recorded this for myself as soon as

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