#1304 Flat Crush
Erin talks gestational, type 1 and pregnancy.
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Scott Benner 0:00
Hello friends and welcome to another episode of The juicebox podcast.
Let's see what we've got today. This is Erin. She's 38 she's only had type one diabetes for about a year. She was diagnosed with gestational diabetes when she was 36 there's some type one in her family, but mostly, we talk a lot about her gestational and then what happened afterwards. At the very end, we chat about her diagnosis story. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juicebox at checkout. That's juicebox at checkout to save 40% at cozy earth.com when you place your first order for AG, one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. AG, one.com/juicebox dot com slash juice box. Hey, do you have type one? Or Does your child have type one? Would you like to help with type one diabetes research? If you do and you are, please go to T, 1d exchange.org/juice, box and spend about 10 minutes completing a survey that will help type one diabetes research to surge forward, T, 1d exchange.org/juicebox,
this episode of The juicebox podcast is sponsored by the contour next gen blood glucose meter. Learn more and get started today at contour next.com/juicebox this episode of The juicebox podcast is sponsored by the Eversense CGM. And sure, all CGM systems use Transcutaneous sensors that are inserted into the skin and last seven to 14 days, but the Eversense sensor is inserted completely under the skin, lasting six months, ever since cgm.com/juicebox, did you know if just one person in your family has type one diabetes, you are up to 15 times more likely to get it too. So screen it like you mean it one blood test can spot type one diabetes early. Tap now talk to a doctor or visit screen for type one.com. For more info.
Erin 2:23
I'm Erin, and I was diagnosed with type one in January of 2023 that's not long ago. No, not long at all. So really, I guess my whole journey actually, really started in March of 22 when I was pregnant, I was diagnosed with gestational it evolved, obviously, from gestational diabetes into type one. And so it was quite the journey. And that's kind of why I wanted to come on the podcast. Was because I was diagnosed like, I don't remember them really talking about the possibility that it is type one, or that it could be type one, I just really remember them saying you have, like, a 50 to 60% chance of becoming type two later on in life. So that's really what kind of drew me to the podcast. Was because, and I'm actually the more and more I see on Instagram, and I, you know, start meeting more and more people that way or through social media, is actually rather quite common, surprisingly, of women having GDM, which actually is just the early onsets of type one.
Scott Benner 3:41
Okay, how many pregnancies Have you had?
Erin 3:44
Just one, one. And I am old right now, 38 I guess. And so I was 36 when I was diagnosed with the gestational and I was diagnosed with type one at 37
Scott Benner 4:04
Okay, 36 years old when you were pregnant, how far into the pregnancy?
Erin 4:09
So I would say, I think I did the glucose test about 25 or 26 weeks into the pregnancy. Is that test unpleasant? The drink is not great. I will say that it's not terrible. It really. I lucked out and I was able to choose between orange and lemon lime, I think. And I picked the lemon lime, and so just, it really just tastes like flat Sprite or flat summon up. I've heard that the orange tastes like flat crush you drink it. And I kind of had this feeling after the fact, like after they did the blood work and everything, that something wasn't like quite right, because boy was, my little boy, very, very active for. Few hours after drinking the drink like way more active, like doing somersaults, it
Scott Benner 5:06
felt like so you and he were on the sugar high after that exactly. Yeah. Okay, so you did the glucose tolerance test. You failed it, obviously, yes, yeah. They tell you you have gestational and then what happens so,
Erin 5:18
and I can actually tell you what my number was because I looked it up. So my number was 297, after the one hour glucose test. Is there a range? Do you know? Yes, and they want you between, I think it's like 100 and 130 or 140 and then they consider you pre diabetes at, I think 141, I don't remember exactly the number, but yes, there is a range, and I think I was almost double. I'm at 297, I was almost double that range. You left
Scott Benner 5:49
the range and you were on your way to Mars. Okay, so they say to you, you have a coin flip chance of being a type two later in life. Is that right? Yeah, okay, and that's right after the glucose tolerance test, yes. So
Erin 6:02
in all of the training for gestational diabetes, my insurance company is both insurance and like the medical system. So I did the first glucose test, and then I actually had to go back and do a three hour glucose test to confirm that it was gestational and I fail the fasting test because my fasting glucose is 121,
Scott Benner 6:27
what is the longer test entail?
Erin 6:29
You do a fasting glucose, they check it if your number is below 95 then they go ahead and have you drink the drink again, and then they take your glucose, or they take your blood every hour for three hours afterwards to see make sure that your body is actually processing
Scott Benner 6:48
the glucose. Gotcha? You hang out in the office during that
Erin 6:51
yes, so yeah, I would have had to hang out in the lab the entire time, good
Scott Benner 6:55
times. So once this this diagnosis happens, do you manage with insulin? Or what did they do for you? Once
Erin 7:03
they sent me home, I was they got in contact with me for classes, and they got me set up with a glucose monitor, and for the first like week or two, they just had me try to do monitor it with diet. And so I ended up going super low carb with it, where I was just eating, like protein and veggies for most meals, and then walking right after walking for a minimum of five minutes after eating, depending on what I ate, also Okay, and I was able to manage my daytime numbers with exercise and diet, but nighttime, after about two weeks, my nighttime numbers were 120 plus, and so I ended up having to use NPH at night,
Scott Benner 7:56
so they had you should do one injection before bed or after dinner or when before
Erin 8:01
an injection, before bed, and I was absolutely terrified of giving myself an injection. My husband ended up being the one that had to do the injections. I couldn't even get the needle to my skin. I was so terrified of it.
Scott Benner 8:18
So did he actually do it for you through the entire pregnancy, or did you eventually take it
Erin 8:23
over? No, so for the entire pregnancy, he did it, which was really all of six weeks, because my son came at 36 weeks, six days, and so we really only had to do the insulin for like, six weeks.
Scott Benner 8:36
Okay, so you felt like you had diabetes for six weeks, and then you give birth, do you just imagine it's over at that point? Like, like, what's your they
Erin 8:44
told me, yeah. They were like, now that the placenta is out, out of you, like, it's done, you don't have to do any more finger sticks. The only thing you need to do is do a follow up blood work. I never wanted that the follow up blood works or, shame on me, you
Scott Benner 8:58
were just like, I don't have diabetes anymore. It came out with the baby,
Erin 9:01
kind of, I think part in the back of my mind, part of me, was like, I think part of me kind of knew early, like before I ended up, that something wasn't right a few months after I had my son, because, you know, I was so thirsty, like everyone talks about and but it wasn't thirst, it was like, dry mouth. So I was constantly drinking, because I just had this, like, dry throw, dry mouth feeling okay, and I was ravenously hungry, and I just kind of attributed it to the fact that I was breastfeeding. You know, I was postpartum. I was breastfeeding. That's probably all it was. I do remember, I think, at the end of August of 22 maybe September of 22 I remembered one day looking at like a street sign and going, wow. Wow, that's kind of blurry. So I, of course, I Google, you know, is it possible to have blurry vision while postpartum? Not thinking, just to type, what can cause blurry vision?
Scott Benner 10:15
You're like, if it's not postpartum, then I'm not really seeing blurry. That's fine.
Erin 10:18
Yeah, that's fine. I'll be fine. And then actually, it went away.
Scott Benner 10:22
Did you know if just one person in your family has type one diabetes, you're up to 15 times more likely to get it too. So screen it like you mean it one blood test can spot type one diabetes early. Tap now talk to a doctor or visit screened for type one.com, for more info. So
Erin 10:43
I had it for, like, I don't know, maybe a couple days. And then the blurriness went away, and I was able to see just fine. Again. In October of 22 I ended up contracting covid. And then, of course, I was breastfeeding, so my son got covid and said, then my husband was helping me with my son, so then my husband got covid. So we all got covid In the beginning of October of 22 I like how
Scott Benner 11:10
you said contracted covid. Yeah. Isn't that funny? Prior to covid, nobody would have said, Hey, I contracted a cold this week. No, the new words to it, okay, you can give covid through breast milk.
Erin 11:24
So I know, I think what happened is I gave it to him just by breastfeeding, yeah,
Scott Benner 11:30
he's down there, and you were like, just pouring them right on his head.
Erin 11:35
Don't even think I thought about, oh, I should wear a mask while breastfeeding him when I was sick, it just didn't even cross my mind. I think at that time, did
Scott Benner 11:45
you know it was covid? At first?
Erin 11:47
No, at first, I just thought that I the flu. Maybe I because the first symptom I had was a fever of 102 and so I didn't think anything of it. And then a couple days later, I was like, Maybe I should do a covid test, and it was positive. You know, a lot of people
Scott Benner 12:07
are talking about this covid thing. I'm hearing about it everywhere
Erin 12:11
I you know. I mean, I'm in human resources, so I'm having and I live in California, so I have to send out notifications. When, at that time, I was sending out notifications when anyone contracted covid and was in the office, and so I was like, maybe
Scott Benner 12:28
just spitting on that baby while it's breastfeeding. You'll be fine, good. Don't worry about it. It'll be fine. Yeah, okay, so sorry. Do you think so because you didn't get the blood work done after the pregnancy. You don't know if your blood sugar stayed up or if the covid kicked in, type one. So you don't really know what happened, huh?
Erin 12:51
Yeah, so I don't really know what happened. I mean, I did do, you know, I did a finger stick in the morning just to see kind of where I was at. And I want to say I was probably around 100
Scott Benner 13:05
or so. Did you do that thing where you were like, this thing's probably not even accurate. I'm probably actually 85 Hold
Erin 13:10
on just one second. Let me my work. I'm on my work computer, so I don't want my Outlook constantly Oh, dinging, dinging. So bear with me while I try to get out of everything. As
Scott Benner 13:23
a podcaster, I would like to thank all of you suckers who let people work from home, because I have absolutely no trouble recording with people during the daylight hours because of you, and I think you should make all these people go back into the office. They're stealing from you. What do you think of that?
Erin 13:40
By the way, I'm actually sitting in my office. Yeah,
Scott Benner 13:42
no, of course, you're like, Oh, now I'll record a podcast, then I'll get back to work.
Erin 13:46
Hey, you know what? It's fine. I just
Scott Benner 13:50
watched my wife get up and decide to make a sandwich in between the time, where I believe the company she works for expected her to be doing something. So you know
Erin 13:59
what, they it's fine.
Scott Benner 14:05
So you're in human resources, let us, like, go off track for a second here. Do you think at some point this is just going to stick, or do you think companies are going to like, go, Hey, we're not getting the same productivity out of people. We need to get people back into a job like setting
Erin 14:20
I really think it depends on the company culture, but I do. I have been hearing more people saying that they've been going back into the office more frequently. But I do think that there's going to be more of a hybrid. You know, we're going to get a couple days more flexibility. Yeah, it's just more flexibility. Yeah,
Scott Benner 14:38
there's no doubt that the lack of commuting is it's valuable for everybody. You know, you're not as tired when you get to work. You have more life to live. But I also see what my wife does is like, in the beginning, I was like, oh, no, commuting. She'll have, like, more out because my wife used to drive a long ass way to work and and instead, she just works. Do. During the time she saved commuting. So it's not like, I think there's part of me that thinks the company's getting more out of her by not making her go in. And yeah, yeah, right,
Erin 15:08
I am that way too. So if I don't have to go, like, if I'm working from home one day and my husband's taking our son to daycare, I'll work from the time that they leave until either the time I have to go pick up my son from daycare or the time my husband comes home, but I would say, during covid, my husband's company that he was working with at the time, they saw to go in the office a couple of days a week. And so I would start working from whenever he would leave the house, and then I would work until at least an hour or so after he got home. So I was doing at least nine to 10 hours a day, five days a week. I
Scott Benner 15:45
see all the value. I'm not unaware of it, but I'm just old enough that part of me just thinks, like, go to work. Like I know that's like when Elon Musk told his employees, if you want to work at Tesla, you're coming to your job. And if you don't want to come to your job, you don't work at Tesla, which he did, I think during covid, like, he was just like, you know, I was like, privately, I was like, that's cool. I would have said that, if I was him, I would have been like, I'm paying you show up and do this thing. But at the same time, I do think my wife does more work when she doesn't have to commute. I do. I think the company's making out by not bringing her into the office, and they're not paying for that building or whatever else they have to do. You know what I mean. So I don't know how to like fall on it, but I can tell you that my son is fresh out of college, and one of the first things he looks for is either a remote or a hybrid. Like offering, you know what I mean,
Erin 16:36
it totally and I think it's a culture thing too. So like the company I work for now, what we do is very abstract. You need the ability to say, to go into somebody's office who might be more of an expert than you, and ask some questions. And it's a lot harder to do that when it's only through teams, but when you have the ability to walk over and be like, Hey, can I pick your brain for five minutes? And there's value in that, you know, then they get they like, answer all of these questions, and they actually come to a conclusion that they would have never come to before. They
Scott Benner 17:17
weren't together without it. And I guess the other problem could be, is, if you're hybrid, what if I'm there on Wednesday and you're not there on Wednesday, and then,
Erin 17:25
yeah, you have to schedule a meeting. So it's more Yeah, you know, it's less impromptu and more scheduled.
Scott Benner 17:32
Meanwhile, people who have, like, what I'm gonna call real jobs, are like, Yeah, okay, well, I can't change someone's tire from my house, so I go to work every day. But right? You know, I see both sides of it. I'm just old and crotchy enough to be irritated by people who don't have to put in a lot of effort. I don't know. And by the way, I want to be clear, I make this podcast 25 feet from where I sleep, so I'm a bit of a hypocrite on this one. And me going somewhere wouldn't make this any different. So anyway, no, I
Erin 18:00
would still be the same regardless of if you went into because you'd end up going into a studio, it would be exactly the same thing. It just happens to be your spare room as your studio. So,
Scott Benner 18:10
yeah, I my accountant one time said, Why don't you rent a studio space that you have to get up and go to it. We can write that off. And I was like, you want me to spend more money, to save a little bit of money? And he was like, yeah. I'm like, I don't understand what you're saying. And I still don't understand, like, I don't understand anything accountants say to me, if I'm being clear, nothing at all. Anyway, we're pretty far off the track. You. Let's go back through it. You got the you get pregnant on purpose, by the way. Are you trying to have a baby?
Erin 18:37
Yes. So we decided after the first year. So after 2020 my husband and I decided we're like, Hey, let's go ahead and try if we have a baby. Great. If not, that's totally okay too. It took me about nine months to get pregnant from when we made that decision. I need
Scott Benner 18:57
to ask you, though, like 36 is like, did you get married later? Or did you just wait a long time to to get have a baby?
Erin 19:04
We started dating in 2010 we got married in 2015 So, and I was almost 30 when we got married, and then we just waited a little while longer, the mindset that we didn't really know if we wanted to have kids or not so and then covid happened, and then we decided, hey, why not? Let's try having a kid. Crazy
Scott Benner 19:29
question, if you knew that having a baby would lead to you having diabetes, would you have done it?
Erin 19:37
Yes, because I absolutely love my son so funny that you that you asked that question, because not was it yesterday or the day before? So just three stories, I just went from MDI to the Moby, and so my son is kind of still very freaked out about the infusion set. It and seeing all the tubing and, you know, the pump and all of that. So at first, was upset by it. Now he's quite fascinated by it and wants to see it all the time. And so I was showing it to him, and then he picked me or something. And I was like, don't, you know, be careful, bud. And I was like, Don't kick that, because that's, you know what keep it is keeping mommy alive. Granted, he's 22 months, so not like he actually remembered and understands what I'm saying. And I don't know, I said something like, you're part of the reason why Mommy has that. And then I changed my thought, and I went, most likely I would have ended up type one at some point in my life, it just happened to be that the pregnancy is what triggered it.
Scott Benner 20:47
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Erin 23:49
mean. And then the internal, my internal Donald don't dialog after that was, don't say that to him when you're older, he doesn't need to know that. That's what triggered you to have type one. Yeah,
Scott Benner 24:02
that's fine. Yeah, no, I know it's interesting, because you definitely can't do that. I mean, you and I,
Erin 24:09
exactly, I was like, you said it now he'll never remember that conversation and move on.
Scott Benner 24:14
Yeah, let's not do that again. It's interesting, though. It means very, very interesting. Actually, I'm, I'm impressed that you said it, and then thought, why am I? I should not do that. You know, like a lot of people say things and just blow right past it, so it hit you right away. Was it instantaneous?
Erin 24:29
Yes, it was like, once I said it, I was like, Oh, I shouldn't let him ever think that he's the reason that I have this.
Scott Benner 24:38
Yeah, no, that's good. I'm glad you're thinking that way. And
Erin 24:41
I think part of it is, is that, you know, and kind of, going back to the GDM, I was ashamed of it. I didn't tell anyone. Like, when I had to do my finger sticks, I hid in my office and, like, turned my back so nobody could see through my window that I was doing it. It, I only told a handful of people that I had it, and because I felt a lot of shame for it,
Scott Benner 25:09
can you tell me about that? Why do you think you felt that way?
Erin 25:13
I think I felt that way because I saw the statistics that, like only 10% of women have it. And how could it be me? Like, I think it's just you that kind of internal, not like grieving process. I
Scott Benner 25:29
guess you didn't feel like you did something wrong.
Erin 25:31
I did, I guess feel like I did something wrong, but then at the same time, I was like, but I didn't. And so everyone was telling me, You didn't do anything wrong to have this happen to you, but it just I, I just remember not wanting anyone to know and just feeling ashamed of it. And I remember when they told me, you know, they sent me home from the fast, from the glucose test, that I started to cry because I was so ashamed, a bit, not because you were kind of like, why is me? Why me? Like, why am I the one that has this, yeah,
Scott Benner 26:10
not not angry or confused or even sad, but specifically ashamed,
Erin 26:18
yeah, yeah. Gotcha. Has that gone away? Yes, now it has. It's gone from, you know, and I, I know I mentioned earlier that I don't care about, like, Instagram and that kind of stuff, but, and that's not why I'm on here, but I feel like I've used that as kind of a platform to talk about it and feel less ashamed over it. And once I got out of the hospital, I felt inclined to share my story and to, I mean, I don't share every day, but it just kind of blips and, you know, stories and Instagram and things like that, and just kind of talk about my journey and what's going on. And once I was diagnosed, I think that's where I was, like, got over that kind of shameful feeling, and when this is my new normal. So let's just go on and accept the fact that I had GDM, and now I have type one, and now what am you know? What am I going to do moving forward to in this new
Scott Benner 27:26
normal as a question, sharing digitally about this? Did it help you in real life? Yes. Okay, so it's not just that you abstractly don't have a problem with anymore. You can tell people about it through Instagram, for example, but that's translated over into what they call IRL, yes, exactly.
All right,
good. Well, that's I was that's interesting because, you know, so often people tell you what's wrong with social media, and this is an example of something where it helped you. Yes, I just didn't know if it would have been interesting if you were able to share online, but not in person. You turned your back so people wouldn't see. I'm sorry,
Erin 28:05
and now I have no problem. I mean, in the beginning, I definitely struggled with doing my injection, so like, if we went to a restaurant, I would typically pick out what I was going to eat ahead of time inject, either right before we went in, or I would order, and then I'd go out to the car and inject and then come back. And then probably about a month or so after being diagnosed, I was like, I'm not going to think I listened to one of your episodes where you, you know, stopping and saying something to I think it was a little girl who was injecting at a table. Yeah,
Scott Benner 28:44
that got me out of jury duty years later. I'll tell you how. Finish your story. I'll tell you how.
Erin 28:52
So I think hearing that made me go, it's okay. People aren't really paying attention to you. Anyways, they're paying attention to themselves. And from then on, I had no problem with it. I think around work and around coworkers, there were very few people I told at first, and now I'm much more open about it. And
Scott Benner 29:15
what was the reaction? Was it what you expected? A lot
Erin 29:20
of people start with, I'm so sorry, you know, and things like that. And I think part of it is the majority of people don't understand type one, right? They understand the concept of diabetes, but they have no concept of what type one means. And I think that's also why I started kind of posting more on social media too. Is a lot of my friends just didn't understand. And I was like, well, I might as well use this platform as a way to help inform people that I know, and I can do it as a whole, instead of telling everybody individually.
Scott Benner 29:59
Yeah, good. For you. So I was in a Red Robin with my children. I feel like, if you know what Red Robin is, it's like, yes, yeah. It's like, I don't know, slightly better cheeseburgers, but not really good. We were leaving, and there was this little girl giving herself a shot at her table. And I just happened to be walking by as we were leaving, and I made eye contact with the mom, and then I said to the little girl, I'm like, good for you doing that at the table. I said, I'm proud of you for giving yourself your shot here. And I said, my daughter has type one too. And my daughter waved. And we kept going. It was like that quick. And years later, and I mean, years later, I got called for jury duty, and I was still like the one like very much taking care of Arden's blood sugar while she was at school. And I was worried that if I got called for a jury that I wouldn't be able to interact with her and manage with her. So I called the courthouse, and I started explaining this to this person on the phone who ends up being the mom from the restaurant. How funny, and she let me out of jury duty. And that great. That's fantastic. Yeah, I didn't know. See, acts of kindness can't get paid back right away. You gotta wait exactly it all comes around. How insane is that? Like I was explaining to her, like, look, this is how I do this thing with my with my daughter. And like, you know, and I don't know if you know what type one diabetes is. And she's like, I do, my daughter has type one diabetes. And then we started talking a little more, and she's like, are you Scott from the podcast? And I went, Yeah. And she goes, Oh, my God, you're gonna think this is nuts. Years ago in a Red Robin, and then she told me the story, back to me, and I was, like, unbelievable. Like, that's really crazy. I think it's a big deal when you're bold in public like that, because I think you don't know who else is going to help, you know? And
Erin 31:54
that's kind of, I think, why I started to do it more in public, too, and just not care about it so much. And it was, I remember the first time I was at a work event, and, you know, I the one of the people sitting next to me, he already knew that I was diagnosed with it, but other people at the table didn't necessarily know, and so I just kind of leaned over to him, and I was like, Hey, do you mind if I take my insulin. Now I can go to the restroom if you know, it makes you uncomfortable. And he said, No, it was fine. So I, you know, of course, calculated how many carbs I was going to eat, and then gave myself the injection. And and then the people around me started asking questions. And so then it actually, you know, I started talking about it. And so it actually ended up being kind of a learning opportunity for other people, and since then, I've become less, I guess, concerned at work. I'm good, not that I was concerned, but I just now, there's
Scott Benner 32:53
two ways to think about it, and you're interested, like, have you heard the cold wind episode with the human resources professional? I have Okay, so what do you think? Do you think your job could be in jeopardy for knowing, for somebody at your company, knowing that you cost more money than other people do?
Erin 33:12
No, I don't think so, because my I have to say I I love my company and my direct supervisor, direct manager, is incredibly supportive, and she's great in so, no, I don't think so, but I have learned listening to the podcast. So I'm actually on my husband's insurance, and there was something, oh, I know what it was. It was gevok. So gevok is was not part of the formulary for glucagon options. And so I actually ended up calling his insurance and talking to them, because they're self funded, asking them why it wasn't covered. And I think I need to call back and double check to make sure that they put it on the formulary, but they actually looked into it and they were going to see what they could do to get it added as an option on the formulary. Your husband's company is a self pay they're a self funded insurance.
Scott Benner 34:19
Can we take a detour for a half a second. Can you tell me what was your impression of hearing that? Because cold wind is an anonymous episode, so the person's not just anonymous. Their voice has been changed. And she came on having been a human resources person for, I mean, decades, and she talked about the people that her company would have her come up with reasons to let go of because they were costing them too much in healthcare and obviously completely illegal and immoral, but she shared the stories nevertheless. How did you interact with that episode?
Erin 34:53
It actually didn't surprise me any so in my tenure as an HR professional, I have worked. Worked for software development. I've worked in healthcare. I've worked for pharmaceutical distribution company. I've worked for a union, and now I work for a conservation and mitigation company. So honestly, a lot of the cold wind episodes don't surprise me a whole lot, and I think it's just from my time in healthcare, because prior to becoming a HR professional, I actually worked in a doctor's office right out of college, and so there's a lot of things that I think just don't surprise me anymore. Yeah,
Scott Benner 35:43
but does it change your mind? Like, if you So, here's the question, if you change jobs again, or say, your husband, I'm trying to make up something that forces, forces you off of his insurance, right? And you have to get your own and you change jobs, would you keep it to yourself then? No,
Erin 35:59
I don't think so, because I think for safety reasons, for me, people need to know.
Scott Benner 36:06
Yeah, no, I agree. It sounds like that in some scenarios, scenarios in which you're not going to know you're in or not in, you could end up being on the chopping block later for your health reasons. And
Erin 36:21
if that's the case, I think being in human resources, as long as I have that, if I felt like I was let go for an unethical or like an immoral reason, I would probably file a complaint. You would fight back. I would fight back, because I think that that's, unfortunately, there are employers that are out there that are still doing things like that, but in my opinion, or in my experience, there's a most employers do actually care about their employees, or to an extent, I will say, to an extent, you know, because they care about the bottom line, and the employees are usually what help the bottom line. Yeah,
Scott Benner 37:05
I understand. Okay, all right, thank you. I appreciate that little flight of fancy. Yeah, of course. So today, you're managing with the Moby, and I'm going to be remiss if I don't ask you about it. How is it I
Erin 37:18
am loving it, since it's my first and I actually so funny things got I got it less than a week ago.
Scott Benner 37:26
Oh, okay, so you don't know what the hell you're talking about, but still, I
Erin 37:31
mean, I've, you know, I see a difference already, okay, but I love the ability to not have to inject all the time, and because I'm if my blood sugar gets over, you know, I have my eyes set at 180 at the moment. If it starts creeping to 180 I want to inject, even if I've just injected like, I want to take more insulin. I'm like, No, you need to let your insulin work and see where it goes. Let's keep an eye on it, and then in 45 minutes, if it's still half an hour, 45 minutes, if it's still high, then we'll see what we need to do. But I love the control IQ, doing the correction boluses and things like that, because otherwise, yeah, it's just, I love the less than a unit corrections that it does, because that's where I was struggling with is I was doing, you know, I had a vial and a syringe while the syringes are in unit one unit increment, so I would be eyeballing if I try to do anything less than a unit, Yeah,
Scott Benner 38:35
but you're in such an interesting situation because you haven't had diabetes that Long, and you've jumped onto like a completely brand new pump, right directly from MDI. What made you choose that pump over Medtronic 780, G OmniPod five or even the the x2 from tandem?
Erin 38:56
Well, my two choices, I think, through my insurance, were primarily tandem x2 or OmniPod. When I was initially diagnosed, especially after listening to your podcast, I was like, Dad said, I want OmniPod. That's what I want. And I even got the sample that you can order through OmniPod because I was just fascinated by the fact of not having to have tubes, and it's all self contained. I don't know, summer last year, I started looking at cost for insulin insurance, or my endo team told me I had to wait until, you know, essentially, six months after being diagnosed. Think that's pretty common for most people, and the only reason I didn't go on a pump earlier was because in June of last year, I decided to go with the g7 because my original CGM was the libre two, and then I decided to go on the g7 In. And so that kind of stopped my team from saying, hey, let's get you on a pump. Because, you know, it's barely, at this point, barely integrated with the x, with tandems, other pump, right? And so I started looking at pricing and tandem while was more expensive up front, it is cheaper overall throughout the year, where OmniPod would have cost me significantly more because of the I think, co insurance that I would have had once I met my deductible,
Scott Benner 40:37
the way your insurance is, oh, I'm sorry. I'm sorry. No, you're fine, yeah, it's just the way your insurance is set up. Put you in that situation,
Erin 40:46
exactly, okay, exactly. And then I think at my October appointment with my endo nurse practitioner, because my endo team is a nurse practitioner and a CDE and then an MA within the group. And so my nurse practitioner at my October appointment was telling me about Moby, and she said, I really think that that's going to be a good fit for you and your lifestyle and the things that you want. And so I was super excited when she said that. And so that's kind of how
Scott Benner 41:19
it all happened. Well, yeah, I mean, if the OmniPod was out of your reach for cost reasons that I think the Mobi makes this the next best sense, right? And it runs the algorithm, the the tandem control IQ algorithm, so you just didn't go from you literally went from not being able to inject less than a unit of insulin to an algorithm taking care of your blood sugar. And I'm interested to know, like, what's have, has there been an improvement, like, in your like, what do you see on your clarity report?
Erin 41:49
I haven't actually, I should probably look at my clarity report. I've been trying to kind of give it a week or so to see what the difference is. I definitely have noticed that there are times that I'm less in range in the last 24 hours. But I think some of that has to do with I always tend to get evening highs. And I think it just has to do with I'm really bad about eating higher protein and fats, because I like to not have to bolus for a snack sometimes, but then it's like, Okay, now it's catching up with you hours later. Get
Scott Benner 42:28
the rise anyway, yeah. Do you know how to bolus for fat and protein?
Erin 42:33
Kinda, yeah. I think I just choose not to. Sometimes. I
Scott Benner 42:38
gotcha, you're trying to see if the algorithm will take care of it for you. Yeah, I
Erin 42:42
think part of is that some of the evening stuff, I am trying to see what the algorithm will do, and just trying to understand better of what it you know, where it needs my help. And then sometimes I just go, Okay, enough is enough, and I'm going to do a correction. And then it says, Oh, you have too much insulin on board. You can't do a correction. I'm like, Okay, well, I guess I'll just wait then.
Scott Benner 43:04
So, yeah, you're in the very beginnings of this. There's an episode called control IQ ninja you should listen to. I
Erin 43:11
think I've listened to it once, but I wasn't, obviously, it wasn't yet. I do need to go back and listen to
Scott Benner 43:17
it again. And there's fat and protein episodes in the Pro Tip series. And if you go to the Facebook group, in the feature tab, there's a whole list of fat and protein episodes, if you want to get involved in them. Okay, cool. You haven't had type one that long, but you seem really well versed in the podcast. Like, where did you
Erin 43:33
find it? So right after I was diagnosed, and I think it was like a, I don't know, within a week or so being diagnosed, a friend of mine actually sent me a link to your podcast. And once she sent me that link, I just started listening. I actually started listening. I listened to the episode she sent me, which I think was episode it was in the eight hundreds. It was one of the ones where you reposted an older episode. You know, how do you talk about diet type one or something like that? And then I went back to Episode One, and I listened to from episode one until about 75 to 100 I don't remember where I stopped. And then after that, I was like, Okay, let's jump to some of the newer stuff. So I skipped some of the other episodes I have listened to the defining diabetes and the pro tips multiple times, and a few of the other ones, just because I feel like most of my management comes from what I've learned. Oh, I'm
Scott Benner 44:46
glad that's great. So, so what does that translate to for you? Like, what are your outcomes? Like,
Erin 44:53
I definitely am way more bold with insulin than I. Think I would have been had I not listening to the podcast. I feel like I have a lot more confidence than I would have, or than I did nice. And I also think that I'm kind of at the point of starting to come out of the honeymoon phase too. I've definitely noticed needing an increase in insulin over the last couple months so and also, the other thing too, is, is I just kind of do things, I think, and I think the podcast gave me the confidence to go, let's just try increasing so when I was on MDI, I would wake up and my blood sugars would be 121 30. And I'm like, I don't love waking up fasted at 121 30. So I was like, okay, tonight, let's try, you know, we'll eyeball a half unit more and see where that takes me. Yeah, and then after a couple days, I'd still be on the higher side. So I was like, Okay, well, let's try a little bit more. And I kept doing that. And so, you know, of course, my endo team. I love my endo team. She my nurse practitioner would be like, just remember, you don't want to fall more than 30 points. And I was like, I know she's like, and I see you falling at more than 30 points, somebody like and if you notice, I've also taken fast acting insulin about the same time that I'm taking my Lantis at the time, because I was seeing the trend of the rise, and I'd be trying to catch it at like 121 30, so it didn't hit 180 200 plus, where then I would stick there all night long, right?
Scott Benner 46:34
So the way I talk about this, it vibes with how your brain works. Mm, hmm, yeah. Now I can tell, like, you seem it's interesting, because I don't know if people are noticing or not, but your overall general attitude about diabetes, and the way you talk about it, comes off more like you've had it for 15 years, yeah, but you just got it, and you're not being, it's not like you're not being careful or thoughtful about it. You just seem to have a more kind of like a, you know, I wonder if it'll cover the fat on its own. I'd like to see if it's going to do this. I put in extra insulin here because I don't want this number, like, it's all very, um, I don't know. I like it. I like how you're talking about it, I guess is what I'm trying to
Erin 47:15
say. Uh, thank you. And I think part of it just has to do with the fact that I, you know, I look at my a, 1c when I was first pregnant, and it was 5.5 so there's no reason why I can't have three, you know, pre type one, A, 1c numbers. There's no reason why I can't have a, you know, be fasting at 100 there's no reason right that I shouldn't be. And so it's just finding the balance between too much insulin and not enough insulin. And where is that kind of sweet spot? Yeah, you know, I remember when I was first diagnosed, and the first time I met with my I think it was during my intake, my nurse practitioner, she said, you know, at some point, you're going to know more about how to manage your diabetes than I ever will, and so I think that's why I also kind of take it into my own hands, because at the end of the day, I know she has my best interests at heart, but She also has to make sure she's doing the right thing and taking care of her, you know, covering herself and all of that, and, you know, and so I also take that into consideration too.
Scott Benner 48:30
Yeah, that's great. That's fantastic. And thank your friend for me for sharing the podcast with you. That's how it all Yeah, I was having a long conversation the other day with somebody about that exact like, I don't know how to put it exact. I have a couple of jobs. Like, making the podcast is one of my jobs. You would think that's my job, but then promoting it and working with advertisers and worrying about numbers and downloads and long term, you know, viability and stuff like that, that takes up a lot more of my time than I care to I care to believe is true. I just like the struggle every day is, how do you get more people to know about it? I had a at a meeting last night with an AI company I'm considering basically leasing the the podcast to an AI company who is going to like, it's basically an AI doctor, okay? And so it's an app or a web portal where you go and ask questions and get, like, real answers about your diabetes that's actually connected to your live CGM data. I've seen a couple of samples of it, and I've done some live, you know, like last night, I messed around in it for about an hour in a meeting where actually connected to a person. And I said, What's my blood sugar? And it said, right now, your blood sugar's 78 but you should see. The information it gave back. And then I said, Okay, do you think I'm going to get low and like, what should I take right now to, you know, stop that from happening? And then it gave back a thoughtful answer. I said, Okay, I'm gonna have a meal right now. How much should I bolus and when should I How long should I wait before I eat, and it told me those things. And the the the creator of this, you know, the founder of this company, it's a very new company, still said, I would like it if the users could talk to the podcast and, and he's like, you know, there's a world in the in the future where, you know, it'll respond back. And he's like, we have so much of your audio. He's like, we could it could respond back in your voice, like you digitally, could talk back to people through the podcast. I'm like, that's insane. Like, he's showing me all that, right? And I'm trying to like, like, is that something I want to do, is something I want to be involved in? Like, I think it is. And I'm going through all of it, and, and, and in the course of this conversation, he asks me, what's your dream? And I said about my business, because, I mean, the podcast is a business, right? And I, and I said, my dream is scalability. And he he seemed confused, and because I didn't say, like, I want to make a bunch of money, right? Like, I don't think I don't think I said any of the things that he expected me to say, right? Yeah. And I was like, I said, Listen, I try not to say this out loud, because I don't want people to take it the wrong way. And I was like, but there's this scene, and this is not an apples to apples comparison, but there's a scene at the end of Schindler's List where Oscar Schindler realizes he still has a piece of jewelry, something that he could have traded for a person for their life, and that he, you know, almost mistakenly, didn't, didn't do this and and now he's looking at this piece of jewelry that he's wearing and realizing it's, it's, it's Another person. It could have been another person. It shouldn't be lost in anyone looking at about how many people he helped, like, like so many people, but what he was focused on was the one person he didn't get to. And I swear to you, and again, the Holocaust and my diabetes podcast have nothing to do with each other, but that feeling, I feel like that all the time. I constantly think there's this information here, and I see it help people, not just once in a while, and not colloquially. Or somebody emails me now and again. I'm talking about dozens of people every day, telling me directly, I listened to that Pro Tip series, or I heard bold beginnings, or this happened, or that happened, or, you know, and I'm doing measurably better because of that, and as heartened as I am by that, or by hearing you tell me how valuable the podcast has been for you. The right after I get that nice little burst of, oh, this is helping. That's nice. There's a voice in my head, or a devil on my shoulder, or whatever it is, who just says, Why can't you reach more people like, like, and so I constantly feel like I'm failing.
Erin 53:12
That makes sense. And solely, yeah, I think it's so I totally hear, like, get what you're saying and, and I think that's just, we always look for, what can we do? Be doing better, and how can we reach more people? And, I mean, I will, I definitely share the podcast and the Facebook group with you know, because on Facebook, I'm in a couple different like, adult diabetes groups, and people are like, I'm newly diagnosed, and I go, Oh, you have to check out the Facebook group, and you need to check out this podcast. It is super helpful, and it's helped me. And I will send them links of, you know, the defining diabetes, the pro tips, a link to the group, and because I, I agree with you that we all, like those of us in in this realm, it's all about how we share the information with others that are new and coming into it, but then also, How do we reach those that are already, you know, in it and doing their own thing, and think that they're doing great, but don't realize that they could probably be doing a little bit better.
Scott Benner 54:29
They're struggling, yeah, and they know it or don't know it, so it that's beyond me, like so I said to him, so My dream is that there was a way to accomplish that, because right now, I am completely hamstrung by the idea that it is a word of mouth medium. There's not much more I can do about it, and I don't think everybody would enjoy listening to me. I don't think everybody would maybe even understand, but I've seen such a response that I feel like I would like people. People to have at least the knowledge that it exists, so that they can make the decision, yes, I'd like to try this, or no, I'm not going to try it. And that way I'd feel more confident that I did more and and that more people could possibly be find value with it. That's pretty much it. So anyway, it's nice of your friend to tell you about it, and that's what made me think of No
Erin 55:27
absolutely. And I find it fascinating. You know, if you Google type one diabetes, I think your podcast is usually one of the first things that pops up now, so, or at least when I google search it. So I just find it fascinating that it's it's definitely there, and that feel like I hear a lot of parents talking about that. You know, when they're in the hospital with their child, they start Google searching, and all of a sudden, you know your podcast comes up and they talk about how the podcast has helped them, too. So I just find it kind of interesting how it all comes together, not
Scott Benner 56:09
fast enough for me. I'm also very competitive, so there's that's mixed in there. But you know, as I was talking to this, this gentleman in, I don't know, our third or fourth meeting, and you know, he said to me, he goes, Look, Scott, he's like, that your podcast is in the best I can tell, the one of the most valuable things for people with type one and, you know, really well known and respected and etc, and the rock solid information, like all that stuff. And he and he's like, I'm I'm a little confused that you think it's a failure. And I was like, oh, it's not a failure. It's a huge success. I think the way he put it was, nothing else touches you in this space, like you're he's like, you're so far ahead of everybody else as far as like, connections to listeners and followers and stuff like that. And he's like, but you don't see that as success? I said, No, I see that as a massive success. That's not the thing that keeps the fire burning, like, right, right, that I expect, but I expect to get 15 notes this morning from people who are doing better. I don't get that same Jolt from it like, I appreciate it and I respect it, and I'm happy for those people sincerely, but it they just makes me think, go find more people and help them too. And if that doesn't happen for me, I can get melancholy. Is the wrong word? I it can be hard for me to get motivated, right? Like, yeah. Like, I almost, I don't know this is a bad way to put it, but I feel like it's got to be somewhat similar brain wiring to betting on something like, you know, like people bet on sports, for example. It's not even about the money, right? It's you're chasing whatever that feeling is, and, and, or from Russia, yeah, yeah. And I, I want to help more people. And that's, that's my only goal, is to help more more and more people, but me the bag of meat who has a job and a life and everything, who has to get up every day and sit down here and, like, rev their brain up and, like, spit this stuff out. Like, I need, I need something to chase. If that makes I don't know if that makes sense or not. No, it does, yeah, so I'm, I'm always looking for that. And it's nice that the podcast is like, I mean, I looked at it this morning because he brought it up last night. I don't normally look at the rankings, but it's just like, it's crushing in like, 48 different countries, and that's fantastic. Oh, my God, it's amazing. Like, it's crazy to think that there's like, like, you know, you remember the little girl from Russia? Have you ever heard that episode? I don't know if I have, oh, find from Russia with sarcasm, okay, okay. And great episode of like this. At the time, 14 year old little girl who got type one diabetes in like, she lives in Russia. She found the podcast and then went to her mother and said, I need a CGM and a pump and, like, put it on her mom to figure out how to get it for. And then I think, her mom, I don't have to travel to America, so I forget how they did it exactly, but they got it for. And then that girl, like, managed her a 1c to within an inch of its life by herself with just the information she got from me. That's crazy. That's insane, right? Like, I think that's that's amazing, people in Australia, New Zealand, God, I have listeners in everywhere, like, literally everywhere. And still, when I get up in the morning and I look at my whiteboard, which, right now is saying to me, so here, I don't usually say this stuff out loud, but why not? I have an idea for a series of shorts, and I'm going to call it small sips. I have an idea for bitch sessions where I think people should come on and bitch about one specific topic, about diabetes. I have an idea called I don't understand, where somebody comes on and just says, Scott, I don't understand. And then. Makes a statement, and then we try to figure it out together. And all this stuff, like, ways to use AI, and all this stuff, like, I need to, like, I don't know, like, it's hard. It's not hard to get excited. I'm excited about the podcast. It's hard to work as as long and as focused as all these ideas need when it's just me. And so it helps me to turn on a computer every couple of months and look and go, Oh, I'm winning. And that sort of makes me feel like I don't know that's where I get my energy from. So anyway, that's probably too long of a look into my weird psyche, but that's why you guys are all being helped, because I'm incredibly competitive, and I want to win everything. So
Erin 1:00:42
no, but I think that's I think it's fascinating, because it just goes to show how much you care about it and that you want to reach more and more people. Now that I'm in this, I don't know if you want to call it a club, but club, it feels like there's so many people with it. But then at the same time, when you actually look at the numbers, you're like, there really aren't that many people, not even in the grand scheme of things, yeah,
Scott Benner 1:01:07
a couple million people out of three, 30 million Americans, or something like that, right? Or, yeah, yeah. It's, it's, it's an incredibly rare illness. It doesn't feel like that because of the podcast makes it feel like everybody has diabetes, absolutely, which is part of the choice. Yeah, that's what. It makes you feel good about it, because everybody you talk to us type one.
Erin 1:01:29
And I think that's the same thing with like the Facebook groups too. It makes you feel like, oh, there are a lot more people out there that experience the same things you do every day. It's comforting. It is, it is comforting. And it's also kind of going back to why I started, or when I started sharing on social media, I think one of the very first, like stories or posts or anything that I did when I got my CGM, was I, you know, posted a picture with my libre two on the back of my arm. And somebody that I knew, you know, years ago, that I used to do ballet with when I was younger, she sent me a message, and she's like, kind of like, why are you wearing that? Like, are you wearing that just because, for health reasons? Not. She didn't say it that way, but, you know, trying to understand why I was wearing them, and I explained it to her, and so she told me she actually was diagnosed with type one a few years ago, and and so that we've totally reconnected because of type one. And so it's just really interesting. I like how
Scott Benner 1:02:33
she approached you, like you're not doing that, like bro science thing with the CGMS, are you right?
Erin 1:02:39
I now looking back on it, I see how she could totally think that. But yeah, I was like, no, no, no, my
Scott Benner 1:02:49
baby gave me diabetes,
Erin 1:02:52
exactly. But you know, in talking with my parents also, my maternal grandfather had diabetes, and so I already always knew about that, and I always kind of had this inkling that maybe one day I would end up with type two.
Scott Benner 1:03:10
The grandfather had type one or type two.
Erin 1:03:12
They don't remember because he's actually no longer with us. He passed away in the early 80s, but he was diagnosed, think, in his late 40s, so it was like the 60s or early, late 60s, early 70s? Yeah,
Unknown Speaker 1:03:28
no,
Erin 1:03:30
so they did shots.
Scott Benner 1:03:33
How about other autoimmune stuff in your family?
Erin 1:03:35
So on my dad's side, his uncle had type one and passed away when he was in his 30s from complications. And then, I don't know, oh, there is arthritis on my mom's side of the family too. Both my mom and my grandma have
Scott Benner 1:03:54
arthritis. They have RA. Is it autoimmune? I
Erin 1:03:57
don't know if it's RA or not, but they both have it.
Scott Benner 1:04:01
What about hypothyroidism, celiac, none
Erin 1:04:06
of that that I know of for sure. Has your digestion changed since you were diagnosed? Not really. I mean, maybe a little bit, but not a ton. I did start taking in January, I did some digestive enzymes, and boy, did that change my insulin sensitivity? Oh, it made me way more sensitive to insulin at the time. I actually kind of stopped taking them for a while, and I haven't taken them in a while, but at first, boy, was that an adjustment with insulin needs? Yeah, it was. It was actually quite fascinating to see it change like that. And it was like overnight, too. It didn't take much,
Scott Benner 1:04:49
yeah, because the food's not sitting in your stomach as long. Yeah. Scotty takes this every day. Okay? I hear from other people. I hear from other people. I can't remember. I'm like, you know when you remember when you're on the toilet? You're like, I should have took that thing. I'll tell you what I've done that thing. I haven't said this out loud yet on the podcast. Am I gonna tell you? Why not? I'm, oh, my god, slippery elm bark.
Erin 1:05:17
I don't elm bark. Yeah,
Scott Benner 1:05:19
yeah. You're gonna hear about that on the podcast. Eventually, when I I'm doing an episode with a digestive kind of guru, and I got on with him, explained all my digestive issues, and he was like, I want you to take slippery elm bark. And I was like, Okay. And the it took two days, but two days later, I don't know how to I like a king, Aaron, like, like, I imagine a king goes to the bathroom, and the guy texts me, goes, how's it going? And I, of course, texted him back and said, I'm like, a king and, and he's like, Oh, I knew it. Now I have to take a test like, to like. So he masked something with the slippery elm bark. And he's like, now we'll figure out what that is and see if we can't correct that. I was like, okay, right on. So he sent me, I have to take this, like, urine test. I think I have to pay like, $300 for it, but I'm gonna do it. Because he was like, he was so right, just from listening to me that I'm like, I wonder what I wonder what else he knows. So anyway, it's been really interesting. Like, yeah, slippery elm bark. It just, I guess it coats it, coats your insides with, like, more of a mucus layer. And I even hear online that women use it for other dryness. Does that make sense? Interesting? Uh huh. Case your who isn't hot enough, I guess. Like, anyway, who the hell knows? I don't care. I'll try anything
Erin 1:06:45
that's fascinating.
Scott Benner 1:06:45
I was like, Whatever, man, I'll do it. He added a instead of the digestive enzyme I was using. He's like, use this one that has HCl in it. And I was like, which is hydrochloric acid, I guess. And, and he's like, you know, it turns out that it's possible, if I would have met this guy 25 years ago, I wouldn't have had, like, reflux and all this other stuff. It was a, it's fascinating. It just really amazing. Anyway, there'll be a whole episode on it at some point. But anyway, is there anything we didn't talk about that we should have?
Erin 1:07:15
I think I wanted to talk about kind of my diagnosis experience a little bit please do after covid, in November of 22 I ended up having mastitis, and I took antibiotics for it, and then in December, I was speaking of having to the bathroom, was starting to really have the experience of not being able to and in my mind, I was like, oh, it's the antibiotics that's, you know, All I need is in probiotics, and I'll be fine. No, no. But got worse and worse, and then the week between Christmas and New Year's, I was so sick I couldn't get out of bed. I would try to go get my son out of bed, and he like, I couldn't make it from my bedroom down the hall to my son's room without stopping and like catching my breath and then making it into his room. Like the day my husband took me to the ER. He actually happened to be out of town for work, and he left the night before, and I called him, and I was like, Hey, I just ate, I don't know, I think it's like, some watermelon or something, and then, like, 10 minutes later, I threw it up. And he was like, great, that's fantastic. I'm not home, and you're getting sick and you're taking having to take care of our son, who is, you know, seven months at the time, yeah. So he called his mom the next morning and had her come and help with our son, and I'm trying to breastfeed. And mind you, in October, I was at a wedding and noticed I had lost some weight. But then in December, right before Christmas, I, you know, put on some of my work clothes, and I was like, Whoa, these really don't fit. And I was almost embarrassed by the fact that my clothes were so big, and so, of course, didn't think anything of this time. So finally, my husband comes home, and he's like, I'm taking you to the emergency room. So he takes me, mind you, I had thrown up again the next that morning after eating. I think I don't know. I all I really wanted was like peaches and like Activia yogurt and like all the bad things that don't help you when you have high blood sugar aren't produced, yeah, you are producing insulin, yeah. And so again, threw it up within like five minutes of consuming it. So obviously, something was really wrong. I'm glad he made me go to the emergency room when I got there, you know, they This was covid time in the hospital, and so they had, like, a nurse sitting at the front door who did, like, kind of a pre check in. And, you know. Told her, Hey, I'm not able to go the bathroom, and, you know, I'm just not, like, I'm super nauseous and I don't feel good. And she told my my husband told me later that she told him that she doesn't think that it's what I think it is. She thinks it's something else. They wheel me over to the intake area. They get me on the scale. I look down and I'm like, I just lost like 30 pounds in like three weeks. Wow, yeah, wow, wow, yeah. So I lost a lot of weight in three weeks. How tall are you? Six foot and usually about, think, like three weeks earlier, I was about 155 I think at the time when I was checked into the hospital, I was about 130 and I had, you know, obviously had clothes and boots on and things like that.
Scott Benner 1:10:50
Aaron, I'm sorry, you're six feet tall. You had 155 How come you're in human resources and you're not like a runway model or something like that? What's going on?
Erin 1:10:59
You know, it's funny, I get asked. I used to get asked that a lot. I don't know.
Scott Benner 1:11:04
I just never, you never went that way. Well, I
Erin 1:11:07
think part of it was when I was younger, I would have been considered a plus size model, like I wouldn't have, because I was never the, you know, real thin
Scott Benner 1:11:17
back in the day, yeah, when back in the day, yeah, you know, right? Yeah. So
Erin 1:11:21
that was interesting. You lost 30 pounds
Scott Benner 1:11:24
in three weeks. Did you in? In your heart of hearts? Did you have weight to lose? No, no, you were happy at 155
Unknown Speaker 1:11:33
Mm, hmm, yeah.
Scott Benner 1:11:34
Are you like, a tall and like straight, or are you curvy, tall
Erin 1:11:39
and pretty straight. I mean, I definitely have some curves, but nothing crazy. Okay, you know, people look at me now and I'll be like, Oh, I could, you know, I feel like I could use to lose a few and they're like, You look fantastic. Did
Scott Benner 1:11:55
your mother in law notice it when you were busy showing your moves to your mother in law when she came over that day? Were you like? Did she say you, honey, look like you lost weight or anything like that.
Erin 1:12:03
So after the fact, everyone told me that I basically looked like crap.
Scott Benner 1:12:10
It didn't tell you what, it would have helped
Erin 1:12:13
you. I mean, I look back on pictures and I look looked dreadful. I literally looked like I was dying right right at Christmas, about that eye sockets were all sucked in, like, I just looked dreadful,
Scott Benner 1:12:29
and you didn't notice it was as it was happening. Either,
Erin 1:12:32
no, no, I didn't notice it. And, you know, I didn't think anything I was I think I remember asking one of my friends like, Hey, did you lose a lot of weight when you were breastfeeding? Because that's where my brain went. My brain went, Oh, it's postpartum. It's just breastfeeding.
Scott Benner 1:12:49
You know, has the weight come back for you? Oh, yeah,
Erin 1:12:53
it came back with a vengeance. Because once I started on insulin, I was ravenous.
Scott Benner 1:12:58
You don't realize either that that the high blood sugars were also helping you keep weight off. I mean, obviously, because you lose it, you you realize that at the time. But like, you know, once you start taking insulin, and you were probably eating so much while you were losing weight too, right? Yeah,
Erin 1:13:16
right. Well, to produce milk too, yeah, your
Scott Benner 1:13:19
body was trying to do a lot of different things at the same time, while it was shutting the was shutting down. Exactly,
Erin 1:13:23
interesting. So really, actually, the whole kind of the crazy part of my diagnosis story is so I was in the ED for, I think, like, six plus hours. They finally take me back, my husband again, covid time. My husband's not allowed to be in the ED with me, which, in hindsight, I wish he would have just been like, I don't care what you have to say, I'm staying with my wife. Because the doctor, like, I don't really remember a ton of my time in the ED, oh, other than I remember the, you know, them taking me back. I had to do the tests. I think I did a urine test. They did a stomach X ray to make sure I didn't have a blockage, and then they did blood work. And once they did all the tests, the doctor's like, well, you know, there's nothing that I see at this point. And so my husband finally came in when they were getting ready to discharge me and and he's talking to the the ER doctor, and he's like, she needs fluids, like, she's dehydrated. And he just was like, Well, do you want to wait like, an hour or two to, like, be able to get fluids? And so he's like, if not, then you know, you can just go home, keep drinking the Pedialyte that you're drinking. It'll be fine. You'll be fine. And he sent me home with, like, a bunch of, like, laxatives and wait,
Scott Benner 1:14:41
did you get discharged without a diabetes diagnosis? Yeah,
Erin 1:14:45
yep. So I didn't thought this is where it this is the kicker. Go ahead. So they discharge me. They send us to the pharmacy. We collect all the things that he ordered. We get in the car. We drive the 20 minutes. Home. I get we get home, I get back in bed, and then within 10 or 15 minutes of getting home, the ER, doctor calls me and goes, we need you to come back to the ED, your blood sugar was over 500 Oopsie. Yeah, our fault. So, yeah, you shouldn't have let me go.
Scott Benner 1:15:21
They let you leave without seeing the blood work they took. Did they take the blood work for them?
Erin 1:15:27
Right? I don't understand how no one could think I
Unknown Speaker 1:15:30
know. Okay, all right, it's fine. So
Erin 1:15:32
we go back and mind you, you know when we leave, I'm still drinking the highlight that I had with me. And so we get back there, and nurses are livid that he let me go, okay, and they do a finger stick, and I read over 600 Wow, yeah, so because, I mean, obviously I'm drinking Pedialyte, so of course, my blood sugar is going to keep rising. So the that particular doctor ended up getting off the shift by the time I got back, so his colleague checked me out, and you know, he had me, of course, again covid time, so I had to have a mask on. So he had me pull down my mask, and he's like, I can smell the ketones on your breath. So he's like, we're gonna get you in a bed right away. Right away is two hours later, because, you know, it was right after it was the beginning of the year. So I think it was like the first full day covid January, 3 or fourth. Yeah, it was covid Palooza, yeah. And there were over 200 people in the ED at the time. And so finally they get me in. He sees me still in the hallway, and he gets mad, and they finally get me into a room and get me on a insulin drip and an IV and all that and so, so I'm in the Ed, I don't know, almost 24 hours, I think, before they get me into a bed upstairs in the hospital, you know, because ICU didn't have a room for me, so they had to get me to a point where I could be in a non ICU room, because I responded to insulin pretty quickly. So they get me upstairs. The first room that they put me in was a room that was made for one patient, but because of covid, they had two beds in the room. I was in the bed that was in the corner with no call button, like they had a extension cord, basically, that I could, like, push the call button, but it would go to the bed to the main bed in the room. Yeah. So all my belongings were on the bed with me. Mind you, I also had a breast pump. You know I was they got me in one of the hospital breast pumps. I hadn't pumped in over 20 nurse or pumped in over 24 hours. At this time, they put the pump at the end of the bed, so now I'm getting mastic really bad mastitis. Can't pump because the pumps at the end of the bed can't really reach anything. I watched one of my nurses trip over my IV pole trying to be able to log all of my information because you just jammed in the room. This is just a really tight space, right, right?
Scott Benner 1:18:15
But did you think you were in trouble? Like, did you think I'm not okay? Like, like, What's your understanding of your health?
Erin 1:18:22
I don't really remember the doctor talking to me in the ED about anything, because I was still kind of so out of it at that point. It wasn't until a good solid 24 hours after being in the hospital that I started actually having memories of things and was more kind of in tune of what was going on, I think. So I remember looking at the whiteboard, you know, with my information, and it says insulin dependent. And I so I Google, I'm like, insulin dependent. What does that mean? And so then I see that it says type one. And somehow, for some reason, like this, like relief came over me and was like, at least it's not type two. And then I was like, You don't know anything about type one or type two. Why? Why is that a thought that you had? I don't know. It was just
Scott Benner 1:19:11
your blood sugar was over 600 so, you know, yeah, probably not thinking very clearly either. No.
Erin 1:19:17
And they did a covid test. And so, you know, my husband stayed with me until, I don't know, 6am the next morning, he went home to go take care of our son because my mother in law was still taking care of him. And then they come back to bring me some things, and they're not allowed in my room. And the nurse was actually rather angry that the security let them back to see me because I tested positive for covid. Oh, okay, I didn't have covid symptoms. I had had covid in October, and the hospital said no that they would not retest me. So. To see if it was a false positive. Yeah, they had the positive. They were going with that then, yep. And so I didn't get to see my son for like, four days straight because of it. Wow. Oh. What fun. Yeah, Jesus, yeah. And then I had a nurse one, one of my first nurses, I was more awake at the time, and you know, they were doing all the the injections in your stomach. And I kind of pushed her hand away on accident, you know, a total subconscious thing. And she's like, You need this. You did this to yourself. Wait, what did you do to yourself that I gave myself diabetes? Oh, yeah, yeah, of course. But I did it to myself. So mind you, I filed a complaint about
Scott Benner 1:20:43
her when I got out of the hospital. Does anything happen when you do that, or do you never find out about it?
Erin 1:20:49
I filed the grievance. I think they said that they asked me, like what I wanted, and I just said, you know, I just want somebody to have a conversation with this nurse, so that she understands that patients don't always, do you know? They don't know what to do, not to do, and like, have a little bit more compassion and empathy for your patients. Yeah,
Scott Benner 1:21:12
this is real life. It's not a podcast she's listening to where everybody who doesn't agree with her is wrong.
Erin 1:21:17
Yeah, exactly. But then I had some AB. So once I got out of that room with two people, I was able I was put in a room by myself, because I requested that right away so that I could pump more easily and kind of take care of those kinds of things. I ultimately didn't want to lose my milk supply at seven months postpartum. And so my first nurse that I had in my second room. He was fantastic. He was the one telling me about having a CGM, and he was the one that, he's, like, talk to your Endo. They're really great, like, you can get a CGM. And he was telling me about it, it's, he's like, it sits on your skin, it'll read your glucose, you know, continuously. And he's like, you want that for what you have. And so he was great. And I just couldn't, honestly, I am so grateful for him. The one thing I wish is that I could get in contact with him now and tell him how impactful he was for me. And also tell him, if you have other patients that are in the same boat as me, tell them about the podcast.
Scott Benner 1:22:29
That's nice. Well, I hope you get in touch with him. Then if you're going to
Erin 1:22:35
help me, no so. And then I was on the CGM within a week of being released from the hospital.
Scott Benner 1:22:41
Okay, yeah, it's fast. It's excellent, yeah. Well, you're on a good path. I mean, and you think you might be honeymooning a little,
Erin 1:22:47
maybe a little, so I don't think, honestly, I don't think it's much anymore, if at all. But I do think for the first year, I definitely was honeymooning. I was honeymooning, probably hardcore, until about September, and then I could see it starting to kind of taper off a little bit, right? But, you know, my insulin needs just kind of started to increase a little bit. And so I think that's what's making me think that I'm kind of almost done hunting meeting, if not done hunting meeting, I
Scott Benner 1:23:14
gotcha All right. Well, Erin, I very much appreciate you sharing the story with me and having this conversation. I, as I told you before we started recording, I'm going to go pay my taxes now, and I'm getting a blood draw today. So my day is just all about vampires and what I'm giving them. It's a full day today. Full Day talk to you. Gonna put some go to the post office and say, Hey, can you postmark this? Because I don't want it to be late and and then I'm going to go to a lab and let somebody stick a needle in my arm. So, yeah, big day for Scotty, yeah, good
Erin 1:23:49
luck with that. Thank
Scott Benner 1:23:50
you. It's time. I've been it's I'm getting a checkup with my doctor now that I've been on GLP for a year, so it's time for a checkup.
Erin 1:23:59
Well, good. And I, you know, i Congratulations on everything that's happened with that. I, you know, I listen to your diaries and everything.
Scott Benner 1:24:07
Oh, thank you. Yeah, well, the next one that comes out, you'll hear me cursing at the end, but it's going very well. It's hard to hard to be upset, but I had a setback last week that I it just surprised me and pissed me off, all at the same time as and it landed on the day when I had to make the diary. And I'm making the diary, I'm like, God, I'm mad. So anyway, work in progress. But thank you. It's very, very kind of you. Hold on second for me and I will.
Did you know if just one person in your family has type one diabetes, you are up to 15 times more likely to get it too. So screen it like you mean it one blood test can spot type one diabetes early. Tap now talk to a doctor or visit screened for type one.com for more info, I want to. Thank the Eversense CGM for sponsoring this episode of The juicebox podcast, and invite you to go to Eversense cgm.com/juicebox to learn more about this terrific device, you can head over now and just absorb everything that the website has to offer, and that way you'll know if ever sense feels right for you ever sense? Cgm.com/juicebox, a huge thanks to the contour next gen blood glucose meter for sponsoring this episode of The juicebox podcast. Learn more and get started today at contour. Next.com/juicebox if you're not already subscribed or following in your favorite audio app. Please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The juicebox podcast. The episode you just heard was professionally edited by wrong way recording, wrong way recording.com, do.
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#1303 Two Cans of Beans
Rebecca and Mel are mother and daughter T1s.
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends and welcome to another episode of The juicebox podcast.
Rebecca is 57 diagnosed at six. She is Mel's mother. Mel is 34 diagnosed at 32 and today they're both on the juicebox podcast. Please don't forget that nothing you hear on the juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. Don't forget to save 40% off of your entire order@cozyearth.com All you have to do is use the offer code juicebox at checkout. That's juicebox at checkout to save 40 percent@cozyearth.com when you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink, ag one.com/juicebox I know that Facebook has a bad reputation, but please give the private Facebook group for the juicebox podcast, a healthy once over juicebox podcast, type one diabetes, and if you're a US resident who has type one or is the caregiver of someone with type one? I'm reminding you to take the survey AT T 1d, exchange.org/juice, box. This show is sponsored today by the glucagon that my daughter carries, gvoke hypopen. Find out more at gvoke glucagon.com, forward slash juicebox. Today's episode is sponsored by Medtronic diabetes, a company that's bringing people together to redefine what it means to live with diabetes. Later in this episode, I'll be speaking with Jalen. He was diagnosed with type one diabetes at 14. He's 29 now he's going to tell you a little bit about his story to hear more stories with Medtronic champions, go to Medtronic diabetes.com/juice box, or search the hashtag Medtronic champion on your favorite social media platform. The episode you're listening to is sponsored by us med usmed.com/juice box, or call 888-721-1514, 887211514, you can get your diabetes testing supplies the same way we do from us. Med,
Speaker 1 2:29
Okay, hello, I am Rebecca and I am her daughter. Mel, all right, so
Scott Benner 2:36
we have Rebecca and Mel here, and it's not something we normally do. So Mel, can you tell me why you and your mother are here together?
Speaker 2 2:43
Well, I will take any opportunity given to talk about myself, but I also think that we have kind of a unique story together with the diabetes and but we were both diabetic, and I wasn't diagnosed until my 30s, and I'm also autistic, so that adds another level of struggle with the diabetes.
Scott Benner 3:13
Okay, so, Mel, exactly, how old were you when you were diagnosed? It
Unknown Speaker 3:18
was right before my 32nd birthday.
Scott Benner 3:20
How old are you now?
Unknown Speaker 3:22
I am 34
Scott Benner 3:26
and Rebecca, how old were you when you were diagnosed?
Speaker 1 3:28
I was six years old, almost seven.
Scott Benner 3:32
And how old are you now?
Unknown Speaker 3:33
I am 57 Okay, been diabetic 50
Speaker 2 3:38
years we were both diagnosed right before our birthdays. Oh,
Scott Benner 3:43
okay. My daughter was diagnosed right after her birthday a couple weeks later, and she was two when she was diagnosed. Oh, so, okay. So let me just find out a little bit about both the I'll start with you Rebecca, because you know Age before beauty, right? And so let me, let me ask you, 50 years that's you were like animal insulin, right? Or, Yes, yeah,
Speaker 1 4:06
I was on a it went and it was a mixed insulin. So I got two shots a day. It was pig insulin, and it was a 7030 mix of regular and NPH. So how long
Scott Benner 4:19
do you reckon you did that before you moved on to regular and just the regular mph, like, when did the
Speaker 1 4:27
port go away? Oh, gosh, um, not until I got pregnant with Mel, really? Yeah.
Scott Benner 4:34
So how many years did you do that mixture? How old were you when you got pregnant?
Unknown Speaker 4:39
I was 2222
Scott Benner 4:42
so you were 722. I'm gonna do some math here real quick. I don't want anybody to be, uh, like it's five. Carry the one. You had diabetes for 15 years, and you were using that regiment. Yes. Okay, yeah. Do you remember why they had you change? Not
Speaker 1 4:58
really, other than. I, I think it was about the pregnancy and then I was on, I don't think they had Lantus back then.
Scott Benner 5:09
I don't, I mean, yeah, that's 35 years ago, so yeah,
Speaker 1 5:13
I honestly, I don't. I don't remember that much about that, other than I switched from getting two injections a day to I would get one before I ate, and then the long acting, whatever it was at that time. Okay,
Unknown Speaker 5:29
all right, so
Scott Benner 5:30
how do you recall your management being up until your pregnancy? Do you remember what your a 1c were, or what you were considering an accomplishment back then,
Speaker 1 5:41
honestly, just staying alive was pretty good for me. Back then I had it was not good control. I don't really know how to answer other than I don't remember my a one C's, but I think they were pretty good because my blood sugar swung so much that it evened out that number. So,
Scott Benner 6:02
so your a 1c didn't look terrible, but you were very high, very low, kind of fooling the a 1c test, basically, yes, yeah, did you get low to the point where you needed help?
Speaker 1 6:13
The same right around the same time I got pregnant, I started to have hypoglycemic unawareness, and I I couldn't even remember certain things I would come out of it with somebody, usually my husband at the time, ELS dad, helping me, uh, eat something and get out of it. And I, I just at that point in my life, I didn't, I didn't really think, I think I'm kind of low now, so I'm not making a lot of sense in my gravy juice here, you
Scott Benner 6:41
check your are you wearing a CGM? By any chance I am
Speaker 1 6:45
and I'm I'm hovering right around 92 but I think it's a slow drop. Okay, some of it might be nervous. Do you
Scott Benner 6:52
find yourself reaching for words you can't find when you feel like this? Yes, yeah, yes. Mel, I'll jump to you while your mom drinks a juice box on the juicebox podcast, I will jump. Do you know this story about your mother? Do you guys talk about this stuff? Oh
Speaker 2 7:08
yeah, her diabetes was a huge part of my childhood. I think it definitely impacted our relationship a lot because of her blood sugars being so erratic, I kind of learned to there's a certain look in her eyes that I could recognize when she was going low, and I knew, Okay, that's not really my mom. I need to, you know, help her out so that I can get my mom back. And so a lot of my earliest memories are of hypoglycemic episodes with her, and so it definitely had a very big impact on my childhood. Hey,
Scott Benner 7:55
Rebecca, do you have a meter with you? I'd love to know what your blood sugar is versus what the CGM said.
Speaker 1 8:01
Oh, I do. I'll have to go get it. Would you mind? Yeah, no, no, I'm
Scott Benner 8:05
gonna keep talking about when take it back. Okay, sure thing. So, Mel, when you say that it had a big impact on your childhood. Was she low a lot?
Speaker 2 8:13
I was so little. I mean, she had it my whole life. And so it's kind of, I'm thinking of my whole entire childhood, and kind of condensing it down, yeah, and so I'm not sure if it was, if it was really extremely frequent, but I I remember it happening quite frequently in your head,
Scott Benner 8:36
yeah. Then was your father? Were your mom? Are your mom and dad together now?
Speaker 2 8:41
No, they're not. They divorced when I was 10.
Scott Benner 8:45
Okay, so there was some time with him there, and then there was time without him. Yeah. Did it get harder when he was gone?
Speaker 2 8:52
Absolutely, yeah. There was an incident where my mom and I, thank God. We were sleeping in the same bed together, and she had a seizure from below, and she woke me up seizing, and so I was able to call 911, and get her help. But that was a really terrifying thing to experience. I think her, her blood sugar was 12 or something, oh,
Scott Benner 9:28
oh my gosh. So you just called 911, and sat with her until they arrived.
Speaker 2 9:32
Yeah, my we were staying with my grandparents at the time, because it was very recently after my parents got divorced, and so my grandparents were there to help out, but they honestly didn't know the day to day. And so when the paramedics came in to help, they were asking questions, and my grandparents were answering them incorrectly, and nobody was listening to me, because I was 10. 10. So that was frustrating. Rebecca,
Scott Benner 10:03
you can hear me again,
Speaker 1 10:04
yes, yes, 20, and I'm at, yeah, I'm at 114, so I'm, I'm fine. You weren't
Scott Benner 10:09
low. You think you're just nervous? I think I'm just nervous. That's okay. Well, now you might have the bowlers for that juice.
Speaker 1 10:15
Yeah, that's what I'm thinking. I'm keeping an eye on it, not accusatory,
Scott Benner 10:19
of course, Rebecca, but 25 years into diabetes, you were still like seizing in your sleep. I don't know how you guys order your diabetes supplies, like CGMS, pumps and testing equipment, but at our house, we use us Med, and I'm gonna walk you through the entire process right now. I'm looking at the email from us med. It says it's time to refill your prescription, dear Arden, please click the button below to place your next order. Then you click the button that was it. Two days later, I got this email, thank you for your order from us med. We wanted to let you know that your order and it gives you an order number was shipped via UPS ground. You can track your package at any time using the link below, and then there was a link, and then it showed up at our house. Now I'm going to walk you through the entire chain of events. On the 29th which was a Saturday, I clicked on the email on that Monday, the first I got an email that said the order had been sent four days later on the fifth the package arrived. If you can do it easier than that, you go get it. But if you can't, us, med.com/juice, box or call 888-721-1514, get started today with us. Med, get your diabetes supplies the same way we do. This episode is sponsored by Medtronic diabetes. Medtronic diabetes.com/juicebox and now we're going to hear from Medtronic champion, Jalen.
Speaker 3 11:50
I was going straight into high school, so it was a summer heading into high school. Was
Scott Benner 11:54
that particularly difficult?
Speaker 3 11:55
Unimaginable? You know, I missed my entire summer, so I went to, I was going to a brand new school. I was around a bunch of new people that I had not been going to school with, so it was hard trying to balance that while also explaining to people what type one diabetes was. My hometown did not have an endocrinologist, so I was traveling over an hour to the nearest endocrinologist for children. So you know, outside of that, I didn't have any type of support in my hometown.
Scott Benner 12:23
Did you try to explain to people, or did you find it easier just to stay private?
Speaker 3 12:28
I honestly, I just held back. I didn't really like talking about it. It was just it felt like it was just a repeating record where I was saying things and people weren't understanding it, and I also was still in the process of learning it. So I just kept it to myself. Didn't really talk about it. Did
Scott Benner 12:43
you eventually find people in real life that you could confide in? I
Speaker 3 12:47
never really got the experience until after getting to college. And then once I graduated college, it's all I see. You know, you can easily search Medtronic champions. You see people that pop up, and you're like, wow, look at all this content. And I think that's something that motivates me. Started embracing more. You know how I live with type one diabetes, Medtronic
Scott Benner 13:08
diabetes.com/juicebox, to hear more stories from the Medtronic champion community.
Speaker 1 13:16
Yes, and I'm gonna after, after the divorce, after I started living on my own and taking care of myself, I started seeing an endocrinologist, and he that man. I appreciate him, but not everybody, not everybody did. But he looked at me and he said, I cannot believe that you've been diabetic this long and you know nothing about it. And he basically shamed me into learning the technology. And I'm gonna, I'm gonna give myself a little bit of a a pass on it, because when I was diagnosed when I was seven, yeah, they told me it was going to be cured, you know, before I was 10, before you were 12, before. So I heard this, and I looked at every newspaper article. I've got a scrapbook with things from 1978 about advances in diabetes, and it, it didn't change. It didn't change. And then I got to be a teenager, and I just completely, I'm like, nothing ever changes. This is just what my life is so I didn't, I didn't try. I stopped trying. Dr Whitey, I will use his name. His name's Lamont Whitey, and he was paramount in helping me get onto a pump. It was before I got my pump, before they had continuous glucose monitors, but that helped, and once the Dexcom came out, like that was life changing for me. It I don't worry about not waking up. Dexcom has changed my life, but, but Dr Whitey was the one that really, he told me, yeah, I can't believe you don't know anything about this disease. Like, oh. You
Scott Benner 15:00
really do attribute that to just being told at such an early age, this isn't going to last very long. Don't worry about it. I
Speaker 1 15:06
did try back in the day, but I was peeing in a cup. Okay? After school, I would go home, I would pee in a cup. I'd go pee because he wanted fresh urine. So you'd go pee. I'd watch Gilligan's Island, and then I would pee in a cup again, and if it was blue, I was supposed to eat four vanilla wafers. And that was what it was when I was seven. So as time went on, you get to be a teenager, and you don't even care. I just I didn't do very well, and it wasn't until after I, I was divorced, that I actually started caring for myself without help and
Scott Benner 15:48
without the doctor. Do you think you would have even begun then? I
Speaker 1 15:51
think so. I think if I, because I was still, I still saw an endocrinologist, I just didn't care. Yeah, you know, it was like my insulin supplier, so it didn't, you know, I didn't want to get on a pump. They talk about me getting on a pump. I'm like, I don't want one of those. I don't want something attached to
Scott Benner 16:07
me. Try to explain to people listening. It's not apathy, right? Like it started off with, this isn't actually something I have to worry about because it's going to be over soon. But then it turns into like, you're a young kid and you're just not paying attention to it. Are you not having physical symptoms? Something that you would say to yourself, I need to stop this. Like, this is happening to me all the time, or my numbers are crazy, or whatever. Like, why didn't something happen to shock you before the doctor said, I can't believe you don't understand
Speaker 1 16:34
this. Well, things were happening, but I thought that was just my life. I never stopped taking insulin. I took sugar or glucose when I was low, but I just couldn't figure out how the food and the insulin worked together, so I just thought it was a crapshoot. Gotcha. Sometimes I'm low, sometimes I'm high, and I get insulin when I'm high, and I eat sugar when I'm low, and I
Speaker 2 16:59
I just want to jump in to I watched, you know, growing up, my mom always took her diabetes serious. I mean, there was never a time she would complain, you know, oh, I don't feel like taking my insulin, but she always took her insulin. And so there was never, there was never a lack of effort, but it was just, it was almost like you didn't realize that you that it was possible to do better.
Scott Benner 17:31
Yeah. So this, this chasing. It was what she thought it was. Yeah. Okay, Rebecca did the so the pump helped a little bit when you got your first pump, but not completely you're saying the CGM is what turned it around. So how long have you had a CGM?
Speaker 1 17:47
I have had a CGM since. When did they first come out? I got one early on, and then I lost my job, and I did without it for like, two years. And artist, artist, two years after having something like that taken so I just recently got back on it within the past probably seven years.
Scott Benner 18:09
So how many, like emergency low blood sugar incidences with just the pump? Did they go completely away, or did they just the number go down?
Speaker 1 18:20
The number went down. It it I stopped going as high and as low. I remember once, once I wanted to get on the pump, and I didn't have the CGM before they were a thing. I was told by my doctor, you need to stop checking your blood sugar so often, and you need to gain some weight. And because I was checking every hour, I checked my blood sugar every hour that I was awake, but I didn't know what to do with the numbers, until I I heard this guy. His name's Scott and Keith really helped me realize what I could do with those numbers. Wait, really, yeah, oh yeah, it was you. Oh, let me
Scott Benner 18:59
sit up. I didn't know I was going to be congratulated on a second I was leaning back. No, honestly, just that you'd had diabetes for so long. I just, I guess I just assumed that you had gotten it worked out on your own, Ben and found the podcast later. But that's wonderful. I'm happy. So do you think that what was happening before is like you probably weren't pre bolus in your meals, you were shooting up high, testing, seeing a big number, putting in insulin, then crashing down low after the food was digested, exactly that. Yeah, you were just chasing the whole time about that. What makes you find me? Is it your is it Mel's diagnosis? Did you think, Oh, I can't let her live the way I lived.
Speaker 1 19:38
Actually, it's not even that when Melanie was diagnosed, she researched and she told me about you, and I started listening to the podcast, you have literally changed my life as much as the Dexcom did, sir. And I can't say enough good things about you. That's so
Scott Benner 19:56
nice. Thank you. Incidentally, a couple of years ago, a web. I ran one of those, like, you know, the brackets they do in March Madness, but they did it with diabetes stuff, and it came down to the final two. It was me and Dexcom, and I beat them. I was very proud of that. I don't know why it was an online poll. It wasn't really that specific, but that's awesome, yeah, but so well, first of all, that's terrific. And secondly, Melanie, how did you also I love Mel, that your mom calls you Melanie, but you want to be called Mel. Oh, yeah,
Speaker 2 20:29
she gets the pass because she gave me the name. Yeah. No,
Scott Benner 20:33
no. It's funny, though. But every time Rebecca, every time you say Melanie, I think am I supposed to be saying Melanie?
Unknown Speaker 20:40
You can we can use Melanie. If that's easy.
Scott Benner 20:44
Let's see if I can't figure it out. So how do you find a podcast? Then what's the path that leads you to it?
Speaker 2 20:50
After I was diagnosed, I Well a lot of the first fear I had when I saw the 600 on the glucose meter and we went to the emergency room, was I've ruined my family's financial future. And then once I kind of got over that, I'm like, I didn't want to have a seizure in front of my daughter. I didn't wanted to be able to avoid a lot of those things, and so I'm like, I'm gonna do everything I can. And so I I found the podcast on a Facebook group, okay? And so that's how I that's how I got, got into it, and I started sharing some of the information I found with my mom that I thought she might find helpful, gotcha.
Scott Benner 21:42
And then, then Rebecca, did you start hearing things that you're like, This is completely different. Is that what happened
Speaker 1 21:49
when I was a child and we pre bolus? It meant getting your shot. And, you know, was an injection, getting your shot before you ate, which to my mom. And you know, it was 1974 Yeah, but it was get your shot, and then you eat immediately, right? And now I did not understand how much pre bolusing could help my after, after, I ate numbers I had no idea until your podcast. And I mean, I maybe that sounds dumb, but nobody, yeah, they talk about pre bolusing, but they don't. I've finally figured out oatmeal, and it takes four four units is typically what I get 15 minutes before I eat it, and I rarely will go I still kind of Spike, but it's like 181 90, if I go up to 200 after oatmeal, and I never could eat it before, I'd have double numbers going straight up. It's 400 because I felt like But understanding pre bolus. And one other thing I want to really again, give you credit for like, I feel like it's the yay Scott show
Scott Benner 22:59
here, but just for a couple more minutes. Go ahead.
Speaker 1 23:03
It's fine. It's fine. Part of the reason I never felt like I could be good at being diabetic was I felt like any time I had to make an adjustment, if I didn't do the carbs right, and I went high later, and I took insulin, I felt like I had failed. If I had to get a bolus because I was high in the morning, I felt like that was a fail. And so now, when I before I put my feet on the floor, I will get between a half a unit and one unit of insulin, depending on what I'm planning on doing in the morning and what my blood sugar is when I wake up and I'm fine the rest of the morning. And I felt like that was a cheat, like I was I wasn't good at it because I had to do that. I'm like, It's no worse than getting insulin at all, really.
Scott Benner 23:54
And that's something if you take insulin or so final ureas, you are at risk for your blood sugar going too low. You need a safety net when it matters most, be ready with G voc hypo pen. My daughter carries G voc hypo pen everywhere she goes, because it's a ready to use rescue pen for treating very low blood sugar in people with diabetes ages two and above that. I trust low blood sugar. Emergencies can happen unexpectedly and they demand quick action. Luckily, jivo kypopen can be administered in two simple steps, even by yourself in certain situations. Show those around you where you store jivo kypo pen and how to use it. They need to know how to use GVO kypopen before an emergency situation happens. Learn more about why GEVO kypo Pen is in Arden's diabetes toolkit at gvoke, glucagon.com/juicebox, gvoke shouldn't be used if you have a tumor in the gland on the top of your kidneys, called a pheochromocytoma, or if you have a tumor in your. Acre is called an insulinoma visit, gvoke, glucagon.com/risk, for safety information. So you just had these years and years of preconceived notions that were close to right, but not not exactly right, and then you just didn't see the big picture enough to make adjustments to the timing of the insulin. Yes, and that's exactly it's so it feels so simple now in retrospect, doesn't it? Yes, yeah, it does. What could somebody have said to you all those years ago that would have, would
Speaker 1 25:35
have changed things for you? Honestly, I don't think anybody could have said anything at that time, because without the Dexcom, the continuous glucose monitor, I still don't think I could have done a very good job.
Scott Benner 25:48
I have to agree, seeing seeing it happen, is it's transformative. It really does teach you on a different level.
Speaker 2 25:54
I'm incredibly grateful to have been diagnosed when I was within about a week of getting my official diagnosis, I had the Dexcom, and then I was able to get on a pump very shortly after. And so I I think about that all the time, just how grateful I am that I've I've never had to deal with well for about two weeks, I had to deal with, you know, just the the finger sticks, yeah,
Scott Benner 26:26
I have to ask Melanie. I need a little more context here. So you have a child? One, yes, one, yeah. And are you married?
Unknown Speaker 26:36
Yes,
Scott Benner 26:37
you are okay. I'm just gonna dig into this, because I don't know another. I can't find a another route to it. But how do you get an autism diagnosis as an adult? What
Unknown Speaker 26:46
leads to that?
Speaker 2 26:47
I had dealt with various kind of it was described as anxiety. And when I was really, really young, I had a lot of issues with anxiety. I was told all of the doctors I went to, I would describe what was going on with me. I also have narcolepsy, which I've always had, and every time I went to a doctor, they would say, oh, it's anxiety and depression. When I got older, I got a therapist and started really talking about anxiety and how that works. And as we were talking about that, my therapist said, that doesn't sound like anxiety. That's not and so after doing some more research, I found out that there are a lot of comorbidities with narcolepsy and autism and Ehlers Danlos Syndrome, which I also have. Okay, so I already had kind of an alphabet soup of issues before the diabetes. I was accommodated really well by my family when I was little, and so I didn't struggle as much until I got older and didn't have those accommodations anymore day to
Scott Benner 28:09
day. What did it look like for you before you had a diagnosis? Where were the where were the places you struggled?
Speaker 2 28:13
I hadn't been able to go to I can't go grocery shopping. I've never really been able to because all of the the visual stimuli is too much for me, and so even if I have a list, I'll, it's like my brain just kind of blue screens, and I don't know what's going on. And I'll it's I almost black out, and I would come home from the supermarket with like, two cans of beans and absolutely nothing that I had actually gone to the store for. Okay, fell asleep at work a lot because of the narcolepsy I have arfid, which is a it's a sensory based eating disorder that's often associated with autism, and so I really, really struggle with eating. Used to get called into the counselor's office at school a lot because they thought that I had some sort of, like image issue, like I was trying to be thin. But I really, I just, I struggled terribly with eating. Yeah. I
Scott Benner 29:22
think you might have named the episode two cans of beans, by the way, because, in my mind, in a panic, you ran out of the store, but just, and you just grab two cans in front of you, like, I get these, and
Speaker 2 29:34
I'll go, yeah, that's, that's exactly it. That's what I
Scott Benner 29:37
figured you just standing in front of the beans when you decided to get the hell out of there. Yeah. How long were you married before you had the diagnosis? We
Speaker 2 29:43
have been married for it'll be 12 years this year, so I guess we've been together about 10 years when I got the diabetes diagnosis, and eight years for the Oh, yeah, three years into the marriage. Age is when I got the narcolepsy diagnosis, the autism was about 10 years in. Got you,
Scott Benner 30:09
I'll tell you what. I didn't get any sleep last night, so there's a reasonable chance I'm gonna nod off at some point today and not mean to, but, but, but, well, I'll understand. Yeah, you, you will be if it happens now you like, that's fine. It happens to people. Melanie, I'm just gonna ask you a very direct question, okay, you grew up all that time like, so you had issues. That's fine. You thought you were anxiety, you know, etc. But once you're living with someone that your husband never looks at you and goes, Hey, like, are you autistic? Or, like, you know what I mean? Like, doesn't even come up in a joking way sometimes. Or, like, you know, are you always like, you know what I mean? Like, how does that? I'm just fascinated that that slips by for so long, I guess is what, what I'm asking about.
Speaker 2 30:55
It's a little bit embarrassing, because he actually had, he is also autistic, and he brought up to me a few years into our marriage, hey, I think I might be autistic because I've been looking into it, and I was not very he I was not receptive to it. I thought that you're so much like me, and there's no way I'm autistic. So you can't be autistic because we're so much alike and super interesting.
Scott Benner 31:27
Yeah, and Rebecca, before she goes on, yes, I know autism was not a big diagnosis when she was little, right? But she was growing up, did you? Did you have other kids? No,
Speaker 1 31:40
just, just Mel, and I, honestly, because I only had the one kid, and I was, I, my blood sugar was so out of control, there were a lot of mood swings and stuff. I was just kind of doing the best I could. And in our we, I come from a big family, and nobody thought Mel was any weirder than any of the other kids. So it just,
Speaker 2 32:07
yeah, we're a strange family. And so there, there didn't seem to be, I wasn't that much weirder than anyone else.
Scott Benner 32:15
Well, Mel, like, are you just related to a bunch of people with autism or or that are on the spectrum somewhere, or is it just, it just didn't. It's such an odd thing not to recognize, like, that's all I'm saying. You know, I'm not, I'm again, I'm not coming down to anybody. It was just like, You're freaking me out, that this is the story. Just,
Unknown Speaker 32:33
it's, yeah, it
Speaker 4 32:35
feels like somebody I don't know. It almost feels like somebody comes up to me, you know, on my 30th birthday and says, Hey, you know you're actually Puerto Rican. And I go, what I am? Oh, okay, like, I didn't know. Like, it almost feels like that, you know what I mean? Like that, that kind of outlandish.
Speaker 2 32:51
It was there. It was mind blowing when I finally accepted it, because it put so much into context. And if I think that if we had access to the kind of information that we do now, when I was younger, looking back, I was a textbook case, and it it almost kind of shocks me that none of my teachers or anyone ever suggested that I go in for an assessment. I feels
Scott Benner 33:24
like the public school system let you down pretty well too. Yeah, I
Speaker 2 33:28
had to have my own special classroom for when the fluorescent lights got too overwhelming for me, and so they would they would send me in because I would have what they were calling panic attacks that I now know were autistic meltdowns, but so they knew enough to put me in a separate classroom, but not enough to say, hey, maybe you should look into this more.
Speaker 1 33:55
I'm going to jump in right here, because, again, the public school system did not notify me her mother that this was happening, so I, you know, she'd come home from school, and when she was a teenager, we weren't, we're very close now, but we weren't as close back then, so we didn't have the same kind of relationship we do now. And I, I just didn't know. I thought, yeah, she's doing okay in school. And one of the things she said to me, because Mel did very well in school, but she she said, I literally slept through high school, and after the narcolepsy diagnosis, it was even funnier. I
Scott Benner 34:32
did, by the way, I did too Mel, but not because I had narcolepsy. I was just like, I hate this. Wow. Okay, so I want to say, admittedly, I don't understand the entirety of the autism spectrum, right, but, yeah, you're beyond high functioning, I would imagine. Well, I,
Speaker 2 34:51
I haven't been able to work in several years. I think it's, it's a little bit difficult. Able to put, you know, what's the autism and what's the narcolepsy, and what's from the Ehlers Danlos Syndrome. So I don't know, like, what percentage of my disability comes from autism, specifically, because I know that narcolepsy makes the symptoms a lot worse, and then the sensory issues adding diabetes onto it, now I have things stuck to me all the time, and so that's kind of lowered my capacity overall for other sensory input.
Scott Benner 35:40
Okay, tell me about the sensory stuff. What bothers you?
Speaker 2 35:44
My mom can remember when I was getting dressed in the morning for school, putting pants on was physically painful for for me, it cold. Fabric would was like a electric shock all over my body, makes my teeth hurt, just genuinely painful, and I didn't have the words to really describe that back then. But autistic brains process a lot more information than a neurotypical brain, and so my body is just more aware of everything that's happening. I can, you know, being outside can be overwhelming if it's a little too windy, because I'm like, oh, there's too much air on my skin. And so that's why I have the the tea slim pump, because it's a smaller thing that's actually stuck to me, because I feel like I would kind of panic with the the OmniPod, I
Scott Benner 36:55
don't know, Yeah, but you're doing it though, right? Like you're making your way through it,
Speaker 2 36:59
yeah. I really want to credit my mom, because even though her control was not good when I was growing up, she taught me so much. And after I think about all the people who are diagnosed who have no idea about diabetes, never even heard of it, and they're learning all these new things. And for me, I watching my mom. I was just like, okay, that there was a grieving period, but I had seen my mom she keeps pointing to I wrote a note she wanted me to say that my husband bought me condolence flowers for the passing of my pancreas. That's very funny.
Scott Benner 37:55
What kind of bow? Was there a lovely bow on it, or anything?
Speaker 2 37:57
Yeah, it was, it was a, it was a gorgeous, it was a gorgeous bouquet. I cried. Oh, that's very nice,
Scott Benner 38:04
well, but Rebecca, I mean, I think what we're really hearing here, and it's not, it's not an apples to apples comparison. But you know how sometimes you grow up with a parent who's the, you know, an asshole, and you think, either I don't want to be like that, and you work hard not to be like that, or you end up being an asshole and like, it sounds like Melanie saw what happened to you, and was like, Well, I don't want that to happen to me. And so you really, you kind of did help her. It's not how you think of it's not how you think of setting an example. But you really, you ended up being very valuable for her still.
Speaker 2 38:40
Yeah, it was, it was her, her attitude a lot to more, more so than I don't want to be like that control. Was she, she never like it was just a normal thing. She would complain sometime. You know, of course, you don't feel like taking your insulin all the time. And she'd be like, Oh, I don't feel like it, but there was never any like self pity, or it was just treated like such a normal part of daily life, and
Scott Benner 39:11
you took her attitude up, then, yeah, okay, yeah. That's nice. That's lovely. Radical
Speaker 2 39:18
acceptance is the a term that I like, that I think fits pretty well, is just, you know, well, like she said, she didn't think that things were gonna get better, you know, she didn't see really room for improvement. But at the same time that didn't you weren't hopeless about it, that didn't make that didn't make her like, Oh, my life is over. My life is going to be terrible forever. It was like, well, this sucks, but I can deal with it. And so that's just kind of been my attitude. And I'm, I'm so grateful for that, because especially with. With my other health issues, I could see myself absolutely spiraling with a new diagnosis like this, but Well, I was saying to my mom earlier that it was less of an adjustment for me, because there was never a time in my life that I ate food without thinking about diabetes long before I was diagnosed, every time I ate anything, I would think I'm so thankful that I don't have to worry about how this is going to affect my blood sugar. And so now I've I'm still thinking about thinking, Oh, I'm sick, but I still have to think about it. It's not in the positive, grateful way anymore, but at least I don't forget to bolus. Yeah, Rebecca,
Scott Benner 40:48
why do you think you held on to that attitude when things weren't going well for so long?
Speaker 1 40:54
I I believe I am pretty much just an optimist, and always have been I. My mother used to tell me that you're like your grandma. You can get knocked down, but you always get back up. And I don't. I don't know if that's just the way I'm built or because it was never a conscious thing, but I have always felt incredibly lucky. Not lucky like I could go win the lottery if I play it right, but just lucky in that I my kidneys work. I'm not blind. I haven't had any amputations, and I'm still diabetic. I've been here for 50 years. I had a baby, yeah, and I've always just felt really lucky. And so when, you know, I talk about how crappy my control was, but it didn't seem to now, I don't think about being diabetic as much as I used to, and I used to think about it, and I was trying to do something with it, and I really couldn't. I did not know how. And I took classes, I talked to people, I went to doctors. I just couldn't really do it. It wasn't, I feel like I kind of had the spin of, I was just didn't care, yeah, I did care, but I just
Scott Benner 42:14
couldn't, there's nothing left to do for you. Didn't feel like, yeah,
Speaker 1 42:17
yeah. It's like I was trying to dance, but I didn't know the steps, but I still, I still got out there and made up, made a fool myself very every time I was dancing, but I was still trying to dance. And now, with this technology, and you It's you can hear
Scott Benner 42:33
the music now, yeah, right. You can hear the music. You're on the beat. Yeah, yeah,
Speaker 1 42:37
exactly. My, my hemoglobin, a 1c, I went, what, a couple months ago, I guess, and it was a 5.8 look at you. And it's not because of highs and, you know, lows. It's
Scott Benner 42:51
Rebecca good for you. Can I ask a question? It's gonna sound self soaring, I promise it's not. What did I do? This is really me asking, Okay, look, I'll just preface it by saying, I just sit down here and I record. I don't prep, I don't have notes. Somebody comes in, I talk to them, Jenny and I made all that stuff that I'm assuming you listen to Pro Tip series or bowl beginnings, or whatever you listen to, defining diabetes, all that stuff, the variables. I had a list of things I wanted to talk about, but I mean, just a bullet point header, and then we just talk. And so I'm not lying to you, and I say I'm doing this on purpose. It's not planned the way you might think. It's just what falls out of my head. So my question is, and this is more for other people who are trying to help others, but a little bit for me, so I can, I can figure it out. And again, this is going to sound strange, but what did I do that helped you? Like, what did I say or do? Or was it how I said it, or was it the repetition of it? Like, I don't understand why you tried all those other things, and then you listened to me, and then it all worked out for you.
Speaker 1 43:55
I have to answer it the same way I answered what? What made me have the attitude I did. I, I think it's just you. I think you are, you were handed this problem when, when your child was diagnosed, and you, you jumped into it, and you did what you did. And I, I'm not a real religious type person, but I just I, I think the way your your brain works, and the way you're able to communicate with people this way, and and you're wanting to help them, all of those things led to me having an A 1c of 5.8 and part of it maybe was a repetition. Part of it was, you've got a good voice for a podcast. You know, you'll joke with people. And it's you're just easy to talk to. I've heard you talk to other people. That's why I wanted Mel to come. On and talk to you, because I felt like maybe she could share some of her story, but and, and maybe that, yeah, the self serving thing or whatever, but I you're one of my most influential, maybe the most influential per person in my, my journey with this disease. What about me? Wait, wait,
Scott Benner 45:21
that's you doing? Don't step on my moment. What the hell.
Unknown Speaker 45:28
Well, Mel, can I be a guru? Introduce me.
Scott Benner 45:31
I would like to be a guru. If I could. I think that's what I would like to ascend to guruism. Well, listen, I appreciate your explanation, and I want to tell you, like as a human being, it's lovely, and it meant the world to me, as a person who is trying to understand why this is like working for me, it was very unsatisfying.
Speaker 2 45:52
Well, I actually have for me. I think the the biggest thing that listening to you helped me with was just realizing how many different Well, first of all, learning how well we can control, I didn't know, like, how, how good it was possible to get. So just knowing that and that you, there's no, you're not, like, dogmatic about this is how you have to, yeah, not at all do. And so just knowing that there are different options, and especially with my sensory issues with food, a lot of that can be really tricky for me. And so you just, you offer such a wide variety of tools and explain them so well, okay, because this disease, it's not one size fits all. You know, one one thing isn't going to work for every single person. And so there's, it's the the wealth of ideas that you put together is just tremendously helpful, I'm glad. And the lack of judgment,
Scott Benner 47:08
if I'm being honest, I think most people who create content, which I guess is technically what I am, but I think that they're trying to be on a team so they can fervently get people behind them. And actually, when you cause a little bit of strife, it drives numbers. And I'm just not into that. I just think however you eat is how you eat. And you know, the goal here in the key to it is obviously to use insulin correctly, understand the timing and the amount and and see the variables that kind of stuff. But I appreciate, I really do appreciate both of your perspectives. If you said to me, write down the recipe for this. I think I would get it close, but I just don't know it. And I guess you just described Rebecca that the rest of it's intangible stuff that you can kind of say maybe it's this, and maybe it's a little bit of that, but you don't know the measurements of it. I actually told somebody yesterday. Somebody asked me privately, why do you think your podcast is popular? And I ran through a few things, and one of them I said, was I have a deep voice, yeah, and I actually think that helps. I know what I'm talking about, and I have a deep voice, and I talk in pictures too.
Unknown Speaker 48:13
So you do have a pleasant voice. Thank
Scott Benner 48:15
you mellow. Thank you very much. It's just true, like if I was screechy or shrill or, you know, it just wouldn't be the same. It sounds commanding that you have a deep voice. You sound like, you know, what you're talking about, just sort of what it is, you know, yeah. And I think people are tuned in to listen to this as well. Like, again, like people's voices being deeper Anyway, okay, well, this is wonderful. Let me ask you, I want to make sure we're covering the things you wanted to talk about. So Mel, do you have more that you'd like to say about your life, or anything you want to fill me in about
Speaker 2 48:46
there's not really a small snippet, I guess, just the my mom being that my mom and my uncle are both diabetic, and I have a great aunt and a great great aunt who both passed away from diabetes, so I'm from a long line of diabetics. Yeah, I feel so, so grateful, and not a lot of people get that, but I feel like I think about the family members who I never got to meet because they didn't survive it, and I get the opportunity to live on for them and my mom as well. And I just, I think that's incredible, beautiful. Yeah.
Scott Benner 49:35
Hey, so five members I counted, including you and your mom with type one just there, and you have, I can, I never say it correctly, uh, Dan ears. Say it for me that danlos Ehlers, danlos, danlos. And that's like, hyper extended joint, like you can hyperextend your joints,
Speaker 2 49:53
yes, yeah. It has to do with the connective tissue. So I actually had, um, gastroparesis. Is long before my type one diagnosis,
Scott Benner 50:05
just slow digestion in general, yeah. How did that impact you? Trouble picking up nutrients,
Speaker 2 50:11
lot of absorption issues. Iron get low. Yes, yeah, I have to take a lot of iron with the I can't really pre bolus, my a 1c is 5.3 and I have a 92% time in range. Sorry to brag for a minute, but I'm very proud. Don't apologize for that. I'm, I'm I'm doing well, but it in spite of the gastroparesis, but it's definitely it adds its own challenges. But my endocrinologist is always thinks it's really interesting that I had pre existing gastroparesis well before the diabetes. What
Scott Benner 51:00
other autoimmune stuff is in the extended family, any thyroid, celiac
Speaker 2 51:05
My uncle has on my maternal side, a different uncle from the diabetic one has celiac, and I have a grandmother with MS, and I, other than the the long line of type one I can't really think of,
Scott Benner 51:28
yeah, Rebecca is the last name I'm seeing here. Is that your maiden name?
Speaker 1 51:32
Yes, I, when I got divorced, I I got my maiden name. Yeah. So you
Scott Benner 51:38
pull you polish, descent, yes. Okay. And what do we mixed with? What was Mel's Dad?
Unknown Speaker 51:45
What is your dad? Rebecca, he
Scott Benner 51:48
had a job. That's all. I know.
Speaker 2 51:51
I love my dad, but I don't. He didn't come from the greatest family, so I just kind of pretend that I'm just coalition.
Scott Benner 52:02
Oh, I see you don't. But, I mean, is it Irish, Italian? Like, do you know what it is?
Speaker 2 52:08
I think, like a just my various places in Europe, I don't know that there's, I think the last name is Scottish,
Scott Benner 52:19
okay. Oh, that makes so that's what I'm trying to get at, because there's, there's definitely pockets in Europe and places where you see, like, more autoimmune type one come from. That's what. That's all I was trying, yeah. So I was trying to get at, yeah,
Speaker 1 52:31
okay, your dad has Ehlers, danlos as well. He does. Yeah.
Scott Benner 52:37
What's the day to day impact of that? Mel
Speaker 2 52:40
basically had to adapt my whole entire life around it, and so now it's like the day to day. It's just kind of like how I live my life, but I have to do physical therapy. I can't miss more than two days of physical therapy, or I will be unable to move. My joints will lock up. Things pop out of place. I had an issue once where I was driving and my wrist and elbow both dislocated at the same time, and I almost crashed the car. I had my elbow dislocate while trying to hold a door open for some poor man, and I slammed it right in his face. And I was so embarrassed that I didn't even
Scott Benner 53:32
say anything I haven't already Munich, you're sorry, yeah,
Speaker 2 53:35
I didn't like, how do I explain that I've held the door, and then I just slammed it in your Oh, sorry, my elbow dislocated.
Scott Benner 53:44
Have you ever used autism as an excuse for something? Have you ever been like, It's not my fault I have autism?
Speaker 2 53:49
I don't think I've known I might have when I was younger, if I would have known that that's what was going on. But yeah, not, not yet. I'll keep it in the back pocket. Gotcha,
Scott Benner 54:03
there was a term that we used to use, God, why can't I think of it? I think it started with a P for somebody who was,
Unknown Speaker 54:14
Are you thinking of Asperger? Oh,
Scott Benner 54:16
wait, yeah, Asperger's, thank you. When I say p, is that just a word that doesn't get used anymore?
Speaker 2 54:22
Yeah, they just changed the in the DSM, there's now three autism, level one, two and three. And so what previously would have been classified as Asperger's is now level one.
Scott Benner 54:38
Do you think you would have been Asperger's back then.
Unknown Speaker 54:40
Yeah,
Scott Benner 54:41
I think so, okay. Oh, interesting. Oh, that's so interesting. Actually, that's a personal story I can't tell. Oops. I almost said something I can't say that doesn't happen often. It's the person that I know that I'm not connected to enough to think that I would be okay saying what I was gonna say. Oh, yeah, but oh, that's just, it's so. So I don't know the whole thing is fascinating to me. Tactile problems with food. Yes, what kind of stuff bothers you? Textures.
Speaker 2 55:06
I'm I'm very, very sensitive to textures. If there is any sort of unexpected like meat, is tricky for me, because if I bite down on a piece of bristle. That's it. It's not a picky eating thing. It's my it's physiological, my I'll be I can be eating something and be like, Oh my gosh, this is delicious, and I'm really enjoying eating it. And suddenly, midway through my throat will just say, Nope, we're not I can't swallow anymore. Physically, I'm not able to force myself to swallow, even if it's food that I am enjoying. Sometimes my brain will just say, Hey, this is poison and not let me continue. Okay, interesting. So that's that's been sometimes when I bolus, I'll bolus for, like, less than you know what the actual meal is, just in case I'm not able to finish it, or I've got to, like, always have, you know, juice and stuff on standby because of how frequently I will bolus for something that I normally am able to eat and then discover, oh, it's an off day. I'm not able to my brain's not liking this food. Now, there's no rhyme or reason to any of it. Okay, it's, it's absurd and ridiculous, but enjoy something
Scott Benner 56:44
though. I mean, honestly, I look, have you heard me say on the podcast, like I don't like broccoli because it feels like the florets are little, tiny balls in my mouth? Yeah, I don't like that at all. I'm just, I now it doesn't like I could eat it if I had to, but that it is, what about it makes me go, what are we doing here? You know what I mean? Like, I'm not okay with this. The gristle things interesting, like, just shuts you down, huh?
Speaker 2 57:10
Yeah, any kind of unexpected texture and flavors are really I'm not super sensitive to flavors. I can I'm not a fan of spicy food, but I don't get, like, the visceral throat, the throat closing up reaction to it. It's really just just
Scott Benner 57:32
textures, yeah, and you have a little Oh, I'm sorry, Rebecca, go ahead. Well,
Speaker 1 57:35
I was just gonna say, tell Scott about yogurt and Greek yo, about yogurt that much and and then she tried Greek yogurt, and it was she said, What was it? A food has to commit to a flavor?
Speaker 2 57:53
Yeah, I didn't like I wanted to like yogurt so badly, because I'm like, that's such an easy, you know, simple, quick thing, and I never liked it because it's a little bit sour. And someone suggested, suggested I try Greek yogurt, and it I'm like, but that's more sour. So wouldn't I? But then I realized that I just have a preference for, like, a really strong flavor, because if it feels like the flavor. If a flavor is subtle enough, then my brain tells me that it could be an accident and the food has been contaminated or gone off somehow. So if it's gonna have a flavor, it needs to be a strong flavor. I
Scott Benner 58:37
gotcha. Mel, you have a little boy or a little girl? A little girl, how
Unknown Speaker 58:42
old six?
Scott Benner 58:44
Does she have any autism signs? Not because we can't leave it to you and your husband. You guys couldn't figure it out when you were together, so I'm not sure. Yeah,
Speaker 2 58:54
she hasn't had any issues in school or anything. So far, we're staying in communication with her teachers about it. I do see a lot of traits that I have in her, but I I don't want to project too much. But yeah, I figure that's that's something that we're going to have to kind of stay on top of and, yeah. But so far, she's doing well. So
Scott Benner 59:25
you're trying to balance the line between paying attention but not putting it in everybody's head so that they start seeing it if it's not there.
Speaker 2 59:32
Yeah, yeah. I don't want to see little normal things she because
Scott Benner 59:38
she doesn't like carrots, and all of a sudden she has autism or
Speaker 2 59:41
something like that. Yeah, I try really hard not to jump to conclusions too fast.
Scott Benner 59:48
I see if I just met you in, like, day to day stuff, would I know if you and I bumped into each other at, I don't know target, and you were like, you're the guy from the. Podcast, and I'd be like, I am the guy from the podcast. And you were like, Hey, I'm Mel. And I'm like, I know you. And then we chatted back and forth. Like, would I know that you're on the spectrum? Or you don't think I would be able to sniff it
Unknown Speaker 1:00:10
out? Um, I, I don't.
Unknown Speaker 1:00:14
I'm
Speaker 2 1:00:15
told that I'm a little strange. I've always been a little odd, but I don't know that I read specifically as autistic. I might seem like a little quirky, but
Scott Benner 1:00:33
who told you were strange?
Unknown Speaker 1:00:36
What I think? What
Scott Benner 1:00:37
the hell are you after that? Okay, all right. Literally, everyone, yes. Rebecca's like, yes, all, yeah, D everyone, Oh, I see. Okay. Well, can you tell me, Rebecca, tell me something she does that you think, that people think is strange
Speaker 1 1:00:55
one? Well, I was just thinking of one of these. I once asked her, Oh, I she was listening to the radio where we were together, and it was David Bowie. And I'm like, Oh, you like David Bowie. And she reacted in such an angry she's like, of course, I like David Bowie. And when she is confused by a question, it comes across as anger to other people, but I'm aware of that because it's my daughter, and we can joke about it, but it's one of the things that is kind of, it's kind of off putting for other people. If she's confused, it seems like she's angry,
Speaker 2 1:01:33
and I didn't know why that I really, I really was. It made me even more confused when people would react like I was trying to pick a fight with them, because I was genuinely just trying. I didn't find out until my late 20s that I was coming across as really rude, and I'm like, Oh no, why didn't everyone tell me that I was seeming like that?
Scott Benner 1:02:00
Rebecca, if you would have told me that story, and it would have been like, I said, Hey, you like David Bowie. And she said, Of course, I like David Bowie, and you would have responded, I'm afraid of Americans. I think I would have peed myself and fell on the ground just now. Rebecca, do you have any of this Autism Spectrum thing, or your or did Mel's father,
Speaker 1 1:02:23
we've been apart so long now. We were, we got married very, very young, so we've been apart so much that I don't, I don't really remember, but the more I know about autism, the more I kind of think I'll yeah, maybe gotcha, because we're Mel, Mel and I are very I don't know what the word I want to use. We're, we're not, we're not exactly like just a light, but we understand each other on a level that I don't think she's able to get that with other people, because I know that if she looks, you know, she's she's angry about what I offered her as food. That's not, she's not angry with me. And we have kind of a it took us a while to get here. I wasn't the best mom when she was little, and when I split up, you know, her dad and I split up, but we we've come to really appreciate each other. So I don't know if it's because I'm autistic somehow too, or just that I understand my daughter and so I'm more accepting of things. Yeah,
Scott Benner 1:03:34
what do you think? Well,
Speaker 2 1:03:35
I think that there's, I mean, it's, it's a spectrum, and I think she might be like on the like, maybe not quite like a subclinical or something, but definitely more toward she's always just understood me in a way that because I I wasn't able to explain what was going on, and my mom was sort of the only person who would try to understand me. She, instead of just getting frustrated with me, she she was always, always showed curiosity in if there was something she didn't understand about my behavior, she would try to understand it, which was not my experience. I was disliked by a lot of teachers because of how my curiosity came across, and I was assumed to be sarcastic when I wasn't things like that. And so she's always kind of gotten me there and I and the last name, so I'll just say that all of her siblings, all my aunts and uncles, they're all on the spectrum, most of my cousins. Not a Not, not all of them know it, and not all of them might want me to say it, but I'm, I'm fairly convinced I
Scott Benner 1:05:08
see. Okay, all right. Well, it's a family thing. Got it. Well,
Speaker 1 1:05:11
it just saw when that big family everybody knew if Mel would go somewhere and take a nap in the, you know, my parents house, where's Mela? She's taking a nap. Well, we didn't know she was narcoleptic as a child, but if that was normal, if my brother went next door because he just couldn't take the noise anymore, he'd come back after a while. Nobody, nobody made a fuss about the things that were
Scott Benner 1:05:38
adaptive. Yeah, it's adaptive, yeah. And it seems like, at least in your situation, Rebecca, like, a very, like, don't give up attitude too. That is what you described about your about your time with diabetes being rough, and then, like, how come you didn't just, like, throw in the towel at any point you told that story about your mom's head. You're like, you're great. I think your great grandmother, right? Like, you just get knocked down, stand back up again. But that's, that's the little bit of wiring, that's a little bit of personality. It's a little bit of, you know, being able to regulate your emotions, the whole thing there. So maybe your family's just a tough bunch of people who are slightly on the autism spectrum, you know what I mean, kind of just fight their way through it.
Speaker 1 1:06:19
Very, supportive. I lost my my brother, my father just it's been about a year now, sorry and thank you and my I know that I heard that your mother had passed too. I was very sorry to hear that. But in losing my my parents it they were such a supportive couple, my dad was pretty weird. I'm convinced my dad was autistic just at the end of his life. I was his primary caregiver, but my my parents together, they were just such a dynamic couple. My mom was half deaf and my dad was blind, and between the two of them, they they made a full person. They used to make that joke about themselves, but I grew up in a house with disability, and then I was diabetic at a young age, and so I think it Yeah, there was Dad obviously didn't drive. He was blind, and mom would do all the driving, and so we Yeah, it was adapting to whatever was. You don't throw something to dad. You go and put it in his hand. You You don't yell at mom, you look her directly in the face and talk to her that way.
Scott Benner 1:07:34
The perfect Marco Polo team. Do people play that still? I don't think so, right? Oh my gosh. Okay, well, I feel like I've gotten a really good look into into your situation, and I love how far you've come. Rebecca, that it's really a triumph, honestly, to get to an A, 1c, in the fives after all these years. And then Mel just starts off that way. So she's got a great start for her, her time with type one. And it's, it's inspirational. It really is. My gosh, I don't even know what else to say. It just, uh, I didn't expect this, I guess, I guess I'll, I'll finish up, and then I'll ask you if you have anything else. But, like, I read your note, and I have to admit, like, I didn't know what the hell today was going to be and and here's why, like you said, I said, what are some of the themes you hope to cover in your episode? And it starts off by saying, well, all the contact information is mine, but this would be an interview with my also type one daughter, who was recently diagnosed as autistic, and she's interested in discussing family history as a unique, positive. Okay, so that's your description. I swear I thought Mel was gonna be young from your description. And Mel like, I know you're in my group, like now, but I didn't like, I didn't search your name when your mom sent it to me. I just, I just, I just went with what I read, and when you jumped on and you were like, I'm in my 30s, and I was just, I was like, Oh, what the hell yeah. Like, I really thought that I sat down today to have a conversation with like, a teen, or a pre teen, or something like that, who had autism and whose mom was going to sit next to them and kind of help them through it. Yeah. And so even when you started talking, Melanie, I thought, this woman doesn't need help talking to me what is happening. And then I realized, Rebecca, you had type one also. I was like, Oh, I'm like, this is, like, a fantastic opportunity to talk to the two of you, but just not what I was expecting when I started. So really, really,
Speaker 2 1:09:39
I I think that our family dynamic is, is a it's a big part of it for me. Yeah,
Scott Benner 1:09:47
yeah, no, you guys seem very close.
Speaker 2 1:09:51
Oh, yeah, yeah, that we really especially we were already close before my diagnosis, sure, but I. Since then, I was misdiagnosed. Because of my age, I was misdiagnosed as type two, and the doctors were really not taking it seriously, and so she, like I, used her insulin for a while to keep myself stable until we were able to get into her endocrinology. I went to a diabetes class, and I think I was supposed to go to three of them, but I was so annoyed after the first one. I'm like my mom. Can I learned everything from her? I mean, the first day, you know, as soon as we saw the 600 on my blood stick thing. She brought her monitor over. You guys were on your way. Yeah, from that moment on, really, most of my education has been through my mom and through juicebox. About
Scott Benner 1:10:54
that, that's really something. Well, I You guys are delightful. I really enjoyed this. I want to make sure we're not missing anything though I did, I not ask anything I should have, or is there anything left that you didn't get
Speaker 1 1:11:04
to talk about? No, the only, the only thing is her diagnosis story was the only thing that I and she already went over some of that, but she was thirstier than she'd ever been, and I said, Okay, I'm bringing my meter over. I did that, and she didn't want she didn't want to get stuck, so remember, I had to pee on the little keto sticks. I said, If this turns purple, then I'm sticking your your finger. So of course, it was purple. But we went to the emergency room, they gave her insulin and IV drip, and then they sent her home with metformin. And I knew that wasn't adequate. It took, it took such a fight, and I was crying, and I was ready to put a box knife in my purse and bring it with me to these appointments, because nobody would listen. And I finally was able to get with my endocrinologist.
Unknown Speaker 1:12:00
He was also type one. Yes,
Speaker 1 1:12:02
I love him so much. He is. He's just the best. But I, I emailed him, I said my daughter went to the emergency room with this, and you know, she would like you to be her doctor, but they said she needs a referral. They gave her Metformin if you if you think this is okay, I trust you. And they okay my narcoleptic daughter. They worked her into an appointment at eight o'clock in the morning, and I had to go go, you know, sneak in the back door make sure she was awake. And I got her to that appointment. But he just, yeah, he's just like, I don't agree with that. And he's type one as well. And just, just a gem. He is awesome. But yet, as as an adult, being diagnosed with, I guess it was La da really, not really type one, right? Just getting her diagnosis. When I talked to the diabetes educator about her needing to have some insulin. And she said, Oh, it was, you know, she we're pretty sure she's type two. Is she a big girl? I said, I laughed at her. I said, I'm hoping that she weighs 100 pounds, because
Speaker 2 1:13:16
I was very, very thin. You were really thin at that time, yeah, I
Scott Benner 1:13:19
imagine, yeah. Because I know what you look I know what you look like, and you're, you're a lean person to begin with, yeah,
Speaker 2 1:13:24
and I had, I was very, very active at the time, peppered off a little after the diagnosis, because I struggled a little bit to figure out how to keep from going low. And so now I've kind of gotten back into that, but yeah, at the time, I was very fit, very active. The only reason to assume type two rather than type one was my age.
Scott Benner 1:13:52
That's a common mistake they make.
Speaker 1 1:13:55
Honestly, yeah, it is and frustrating. Yeah, at
Scott Benner 1:13:58
least you, your mom was there, and it didn't have to go on for a long, you know, yeah,
Speaker 2 1:14:02
I'm, I'm so thankful for her, because with I already have medical trauma, just because of, you know, being in and out of hospitals with all of my different issues and not knowing what was going on, and I don't know how, like my mom did all this stuff. She was calling people for me because I was just it. I was completely shut down. I couldn't, couldn't handle it. So can
Scott Benner 1:14:34
I ask Mel, this is like, How valuable is your husband in personal moments like this, like, do you guys have incredibly he is okay? Because that's what I'm wondering, because if you're having trouble, if you're shutting down, does he shut down too? Or do you guys have different reactions? Well,
Speaker 2 1:14:50
he was working from home when my mom came over to check my blood sugar, and he was actually in the middle of a meeting, and we were in the same. Same room, and I start hysterically crying once I saw how high my blood sugar was, because I knew what that meant. And he's just trying to finish this work call, and like looking at me like, you know, because obviously he wanted to get off the call and talk to me, but he he doesn't always immediately know the the best thing to do, but he is really big on research, any any kind of, I mean, with the the narcolepsy and the EDS too, as soon as I got those diagnoses, he would do a lot of time, you know, researching, and I used to do all of the cooking for our family. And since my diagnosis, I've, I've started cooking again now a little bit, but he took over all of that. I did not cook at all for about a year and a half because it was, I was dealing with the, you know, adjusting, and he would memorize the carb counts and tell me, and yeah, he's, he's absolutely fantastic, good.
Scott Benner 1:16:13
I'm glad that's great. Are you able to help him when he needs it?
Speaker 2 1:16:16
I try to. He is someone who doesn't ask for help. And so I kind of like, if he's sick or something, I have to be like, Get in bed, right? Like, I'll go make you soup. Why are you, like, dragging yourself into the kitchen? Like I can do it. So I kind of have to to force my help on him a little bit.
Scott Benner 1:16:39
That just sounds like you're married to a boy, but Okay, all right, I got it. I understand, ladies. I really appreciate this very much. I can't tell you how much actually, you were very kind and lovely throughout. And I think it's a terrific story. I appreciate you sharing it with us. Thank you. Yeah, my pleasure. Hold on one second. Okay, a huge thank you to one of today's sponsors, gevok glucagon. Find out more about Chivo hypopin at gvoke, glucagon.com. Forward slash juicebox. You spell that, G, V, O, k, e, g, l, U, C, A, G, o, n.com, forward slash juice box. US med is sponsoring this episode of The juicebox podcast, and we've been getting our diabetes supplies from us med for years. You can as well. Usmed.com/juice box, or call 888-721-1514, use the link or the number, get your free benefits, check and get started today with us. Med Jalen is an incredible example of what so many experience living with diabetes. You show up for yourself and others every day, never letting diabetes define you, and that is what the Medtronic champion community is all about. Each of us is strong, and together, we're even stronger. To hear more stories from the Medtronic champion community, or to share your own story, visit Medtronic diabetes.com/juicebox and look out online for the hashtag Medtronic champion if you have type two or pre diabetes, the type two diabetes Pro Tip series from the juicebox podcast is exactly what you're looking for. Do you have a friend or a family member who is struggling to understand their type two and how to manage it? This series is for them seven episodes to get you on track and up to speed. Episode 860, series intro. 864, guilt and shame. Episode 869, medical team. 874, fueling plan. Episode 880, diabetes technology. Episode 885, GLP ones, metformin and insulin. And in episode 889, we talk about movement. This episode is with me and Jenny Smith, of course, you know, Jenny is a Certified Diabetes Care and Education Specialist. She's a registered and licensed dietitian, and Jenny has had type one diabetes for over 30 years. Too many people don't understand their type two diabetes, and this series aims to fix that. Share it with a friend or get started today. Hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership, thank you so much for listening. I'll be back very soon with another episode of The juicebox podcast. Hey, what's up, everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way recording doing his magic to these files. So if you want him to do his magic to you. Wrong way recording.com. You got a podcast. You want somebody to edit it? You want rob you.
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#1302 IDU: What Does A Blind Person See
Arden and Scott try to figure out what a blind person sees.
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Scott Benner 0:00
Hello friends and welcome to another episode of The juicebox podcast.
If you're subscribed to the podcast, you may have heard Jenny and I do a couple of episodes called I don't understand where we just pop on with no preparation and talk about things that we don't get. We sometimes use the internet to fill in the gaps, or sometimes just chat back and forth and see if we can make sense of it. That idea for those episodes actually came from an idea that my daughter and I had to make a podcast by ourselves. But instead of making a whole podcast, we thought we would just record it and put it here for you guys. These are not diabetes topics. It's a long list of things that Arden and I don't understand, and we're just chatting about them trying to figure them out. You know, it's pretty lighthearted and easygoing. We use Google our conversations and chatgpt to try to figure out the things that we don't understand. 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. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juicebox at checkout. That's juicebox at checkout to save 40 percent@cozyearth.com
this episode of The juicebox podcast is sponsored by the Eversense CGM. Eversense is going to let you break away from some of the CGM norms you may be accustomed to. No more weekly or biweekly hassles of sensor changes. Never again will you be able to accidentally bump your sensor off. You won't have to carry around CGM supplies and worrying about your adhesive lasting. Well, that's the thing of the past ever since cgm.com/juicebox this episode of The juicebox podcast is sponsored by us med. US med.com/juice box, or call 888-721-1514, US med is where my daughter gets her diabetes supplies from, and you could too use the link or number to get your free benefits check and get started today with us. Met. This show is sponsored today by the glucagon that my daughter carries, gvoke hypopen. Find out more at gvoke glucagon.com forward slash juice box, Whose idea was
Arden Benner 2:39
this, not mine. I'll tell you that. No,
Scott Benner 2:41
I don't mean you doing a podcast. I mean the idea of the podcast, like the theme was this, me. Was it me?
Unknown Speaker 2:49
Yeah, I
Scott Benner 2:50
came up with this brilliant, brilliant, brilliant brain. Let's explain to people why we're here. You frequently don't know things this
Arden Benner 3:02
is a really bad on my part, like I'm waiting for a transfer to accept me. I'm waiting for a school to allow me in. Do
Scott Benner 3:10
you think they'll hear this and not let
Arden Benner 3:15
you? No, I don't think that's a really long list of things you put up there.
Scott Benner 3:18
I don't think you see our list. You made that list.
Arden Benner 3:20
I didn't make that list. No, that's a lot of your things. No, those are not all my things. Mine was like half of that, some of
Scott Benner 3:27
your things, yeah, and Cole put some things on there. Why is he on there? Because he he came up with things and he put stuff on there. I don't like that. So the idea here is that a lot of times, well, where should I start? You're a very bright person, but the things you don't understand are shocking. And a lot of times you'll just say, I don't understand, and then you'll say something I don't expect, like, money.
Arden Benner 4:01
It's the education system.
Scott Benner 4:02
That's what we're blaming Yes, okay, 100% so let's go over our list. Because this is the first episode. Let's go over our list here that we're working from. This is a a loose first season list of our podcast together, which is going to be called, I don't understand. Wait.
Arden Benner 4:20
Why are we letting the list out? You don't think we should tell people what's on the list? No,
Scott Benner 4:25
make them come back later to find out what else is on the
Arden Benner 4:28
list. Yeah, because if you tell them, they're just gonna go
Scott Benner 4:30
look it up. Oh, we don't want Oh, in case, while they're listening, they don't understand either. Yeah. So the idea is we're gonna pick something off the list every time we record, and we're going to figure out first of all through conversation, if you and I can figure out what the thing is, and then we're going to look it up. We're going to use chat, GPT, 4.0 to help us the rest of the way. We'll also use the regular old internet. Then we'll figure it out together. I. Feel like this is good. This is like, what schools should be. And our goal here is for you to never again say,
Arden Benner 5:09
Well, that won't happen. But sure, I think I'm just a curious person.
Scott Benner 5:14
It's not just it's curiosity, yeah, but, but when you say to me, for instance, I don't understand what Wi Fi is.
Arden Benner 5:24
By the way, you're gonna realize a lot of the world doesn't understand Wi Fi. They just know that you have to find the word on you have to go to Settings and click on Wi Fi and connect to whatever the word is, and you're supposed to click and put the password in, and that's all they know. Oh,
Scott Benner 5:39
the best part of this podcast is going to be hearing you describe things. That's what you think Wi Fi is. No, I
Arden Benner 5:47
don't know what Wi Fi is. I
Scott Benner 5:48
know, but that's a different episode. That's not today. I
Arden Benner 5:51
don't know what today is.
Scott Benner 5:52
Well, let's go over it. Well, no, should we start with something serious? Because I've gone over this list with a couple of people who have said, like, well, I don't understand that either. Like, you asked me why there's only a two party system in politics. No,
Arden Benner 6:10
I did not. Oh, that was Coles, yes, that I was the one who who answered that question. Actually,
Scott Benner 6:15
okay, that one was Coles, I apologize. Well, let's then, let's start with. Well, here's one that's definitely you Oh God. And I think we should dig right into it. Is it the fingernails? Is that where you want to start? No,
Arden Benner 6:30
I think that's I thought that's what you were gonna say.
Scott Benner 6:31
I was gonna say your question that you put on the list that reads, what blind people see.
Arden Benner 6:38
I don't this one's so crazy. Okay,
Scott Benner 6:41
you don't understand what
Arden Benner 6:42
you don't either, by the way. Well,
Scott Benner 6:44
I'm not blind. Well,
Arden Benner 6:45
I am not either.
Scott Benner 6:47
I'm just saying so the question is, is a person who's like, legally, completely blind, right? Yeah, not like, can sort of see or see shapes or something, you're talking about a person who's just completely blind, yeah, is their brain interpreting data? Okay,
Arden Benner 7:05
this is what I don't understand. I can't get it. So I was listening to someone talk who is completely blind, and my thought was that all they see is like when we close our eyes, what we see when we close our eyes, which is like, just black, basically.
Scott Benner 7:21
But what is black?
Arden Benner 7:25
It's just like, not like, it's space. It's just like, nothing, basically, but you're still seeing something, yeah, but like, you're see, like, that's what I'm saying, right? So I just, I don't know why. I always thought that that would be the answer, but then I heard them say, No, I literally don't see anything, and I'm just like, I don't understand how that's physically possible.
Scott Benner 7:45
What does that mean? Yeah. Okay, now before we dig into it too, far as you know, from a conversation that I used to have with your friend Tanja, that would freak her out,
Arden Benner 7:55
what black is the absence of light? Yeah, I
Scott Benner 7:59
know it's the absence of light, yeah, but I think we need to dig into that first, because I know that that's true, but I don't understand what that means. Do you Well, yeah? Like, well, so like, red as a color, yeah?
Arden Benner 8:14
Well, isn't it true that every color, like, if you're looking at a color, it's actually, technically every color but the one you see.
Scott Benner 8:23
Okay, so there's another question, how, how is it that we interpret like what? No Color is true. So color only looks like it looks because of how our eyes work. I
Arden Benner 8:33
think so. I think it's something like that. I think it's like when you're looking at stuff, it's actually every color but the color you can see. I don't even understand what you just said. I know I saw that online.
Scott Benner 8:43
Okay, hold on a second. All right, we're gonna go, we're going to the internet that because that's got me a little freaked out. Let me get I got a little set up over here. It's a little different than when I make the podcast usually. Um, so our first question is, How do humans interpret color, is that? Right? I
Arden Benner 9:06
don't even know what I said. I
Scott Benner 9:07
gotta tell you right now, when you don't understand what you're asking, you really don't understand what you're asking. Okay? So the eye structure, light enters the eye through the cornea and the clear front surface of the eye, the clear front surface of the eye. It then passes through the pupil and adjusts and the adjustable opening controlled by the iris. Okay, just tell me where the pupil is. Wait. We don't care about this. The lens focuses light onto the retina, the light sensitive layer on the back of the eye. I think we do care about this by the time we get to the end. Okay, so photo transduction. When light hits the cones, what's a cone? When light hits the cones, it triggers a chemical reaction that converts the light into an electrical signal. Those electrical signals are transmitted to the brain via the OPT. Nerve so then you don't have to be able to see to get the signals, because could a blind person not get those signals generated?
Arden Benner 10:10
Whatever you just said makes no sense to me. Here's what I do know. Okay,
Scott Benner 10:14
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Arden Benner 12:50
Everything you just said does not answer the question. I
Scott Benner 12:52
just had tell me your question again,
Arden Benner 12:54
is it true that when I'm looking at something red, say that the object is technically every color but red. Oh, it's like absorbing every color but red, or something like that. Like, I think that's how it works.
Scott Benner 13:15
I'm glad I could be so wrong. What if this thing just goes what? Dumbass, What
Arden Benner 13:21
the Did you just what did you
Scott Benner 13:22
hear that on tick? Tock, you moron. Hold on. Actually, what it says, yes, yes, that's correct. When you see a red object, it appears red because it reflects the red wavelengths of light and absorbs other wavelengths. Yes, that's what I'm saying. Would you like a more detailed explanation?
Arden Benner 13:40
It's right there. Read it because the
Scott Benner 13:43
Overlord looking at it, that is chatgpt, seems to understand how color reflection works under white light. It says white light, such as sunlight, is composed of multiple colors of light, each with different wavelengths, red, orange, yellow, green, blue, indigo and violet. Yeah, it's like the rainbow. Sorry, my brain just did that commercial Taste the rainbow? What is that? Skittles? It's Skittles. Okay. When white light hits an object, this object's surface interacts with the light the surface can absorb, reflect or transmit different wavelengths. I don't under a red object appears red because its surface reflects the red wavelengths of light and absorbs most of the other wavelengths, blue, green, etc. And the example here is a red apple. When white light shines on a red apple, the apple skin reflects the red wavelengths of light into your eyes. How do it know that the apple's red, though. Oh, wait,
Arden Benner 14:41
wait, this segues into another thing that I've been thinking about for so long. I asked people about it. No one wants to talk to me. Don't
Scott Benner 14:46
forget that we're actually here to figure out what blind people say. No,
Arden Benner 14:50
I feel like this really adds to the whole conversation. Okay, so I've always said I'm sure other people think this too, but the people I talk to don't care. How do we know? Know that, like, we're all seeing the same color because we have the same name for something, but that does not mean that we're looking at the same thing. So like, we we're like, in kindergarten or preschool, we go there, they hold up little signs or whatever that say, like, blue, purple, red, and we're all looking at the same sign. So we're all told that whatever color is in front of us right now, for the rest of our lives. It is called this. That's what has this name to it, okay, but there is no way to confirm that we are all looking at the same exact color, like your red could be my green. Oh, okay,
Scott Benner 15:31
that's freaking me out, but you, I think you're right. So what's our question here?
Arden Benner 15:35
No, this is not a chat GTP thing. It's just like because it there's no way to know the answer to this. We cannot see through each other's eyes.
Scott Benner 15:45
Yeah? But wait, because when someone's colorblind, they see the world completely differently than a person who's not colorblind, yeah. So you're saying along those same lines, it's possible that I'm interpreting that green, for example, differently than you're interpreting it, yes,
Arden Benner 16:00
like this is we both agree that this color is green, but that's only because we were taught that whatever it is we're looking at right now, we were shown the same image and told that it was the color green. Oh,
Scott Benner 16:13
so you're not just saying that I might be seeing a slightly different version of green. You're saying it's possible you I could be seeing green and you could be seeing my version of purple, yes. What color do I look to you? Oh, let's
Arden Benner 16:25
not get into that.
Scott Benner 16:28
But okay, well, how we figure that out? Well, what is a colorblind person? Wait, okay, let's go to Color So, wait,
Arden Benner 16:38
wait, pause, colorblind. I don't know if I completely understand it, but I think for some people, it's like when they mix the colors up or something, or you kind of see stuff that's like more so gray, like a tint of gray, or something, okay,
Scott Benner 16:53
but
Unknown Speaker 16:55
oh god,
Scott Benner 16:56
colorblindness, also known as color vision deficiency. Did you run out of words?
Arden Benner 17:01
I'm already done.
Scott Benner 17:02
It's a you're done.
Arden Benner 17:04
I'm done this series.
Scott Benner 17:06
Hey, hope you've enjoyed this. That's been the end of I don't know. It's a condition where a person's ability to perceive colors is different from what most people see. What
Arden Benner 17:15
if they're in the right
Scott Benner 17:18
I see what you're saying, like, what if this is a simulation kind of thing, yeah. So there, apparently there's red, green color blindness, and there's, there's kinds of Jesus, there's like, four different kinds of that, and there's blue, yellow color blindness. There seems to be two of those. And a complete color blindness, which is monochromacy, there's one of those. Well, there's a lot of words here.
Arden Benner 17:39
I definitely wait start over. All right,
Scott Benner 17:41
so I'm gonna butcher these words. Okay, you go. I'll fix them. Protanopia, absence of red cones. People cannot perceive red light, making reds appear dark and blending with green or brown.
Arden Benner 17:53
Yeah, red and green. See, I told you, that's really one of the things that people wrote. Hana Molly
Scott Benner 17:58
reduced sensitivity to red, red, orange and yellow appear greener, and colors are less bright, and then deuteron looks like Deuteronomy, but it's deuteronopy, absence of green cones. People cannot perceive green light, making greens appear as beige or brown. This is what I said. Deuter anomaly reduce sensitivity to green. Greens and yellows are shifted towards red. Holy God making who figured this all out? Like, How did someone see how?
Arden Benner 18:28
That's what I'm saying. How can they see what? Like, you know what I'm saying, yeah.
Scott Benner 18:33
How do we know any of this is true if we can't see through each other's eyes.
Arden Benner 18:46
Wow, that was poetry.
Scott Benner 18:48
Thank you. Oh, it is nice, isn't it seems like a Beatles song in there somewhere. Understanding how we perceive color and diagnosing color blindness involves several scientific methods and tools that allow us to objectively measure and understand these phenomena. Oh, thank
Arden Benner 19:01
God. We're not the scientist. I
Scott Benner 19:03
know. I say all the time I was on the Mayflower, we'd all live, like, 150 yards from the ocean, because I would, like, the first thing I got to and I would have been like, I don't know how to get around that. We got to live here, and that would be the end of it. Do you think you'd be able to, like, traverse a new land?
Arden Benner 19:21
Are you being serious? Look at me. I have a paranormal blanket wrapped around my shoulders.
Scott Benner 19:28
Everybody should have a paranormal blanket. Color vision test, oh, my God, there's we're not, we're not going through these. But brain imaging, controlled studies, retinal imaging, DNA analysis, animal law school. Can
Arden Benner 19:44
I stop you? Yes, I disagree with this completely. You disagree with with science right now, because we just, you just cannot see what other people see. It's that simple.
Scott Benner 19:54
So no matter what the science like like, I'm sure
Arden Benner 19:58
that's true, okay? But. Yes, it just doesn't make any sense, because you can't really see what other people are seeing. Well,
Scott Benner 20:03
it says there's even ways they cross validate it, to get consistent results, to get subjective reporting, technology confirmation. It sounds like they've tried really hard to describe what colorblindness. No, I'm sure they have okay. But then we have, then I think we have to ask, what are cones? Wait, no, I
Arden Benner 20:22
want to, I want to figure this one out. Wait,
Scott Benner 20:24
wait, we don't understand this yet. Cones.
Arden Benner 20:29
You just asked it, what cones are? You don't understand it. No, I
Scott Benner 20:32
when light enters the eye, it hits the cones.
Arden Benner 20:36
I think the cone is the cone, not like what covers your eye, like the little bit, like, if you look to the side, like, the little bit that sticks out that's kind of clear, is that the cone that, like, you would place, like a contact on your eye, no, I think that's the or is the cone does, isn't, like in your iris, like it goes back, like, isn't actually deep. It's like a hole, right? The
Scott Benner 20:55
problem is the cone is sort of like the inside of a camera, and we don't understand how a camera works either. That's on our list. Yeah. Light enters the eye and hits the cone. It triggers a chemical reaction in the Jesus photo, pigments, opsins, with the cones. That reaction converts light into electrical signals. It's amazing that we can see a goddamn thing. That's crazy. Okay, what was your question that you said we didn't answer. Wait, hold on a second. Wait what? Hold on. Put all of this more simply.
Arden Benner 21:30
Oh, you know what I do and I don't understand what it's saying. I say dumb it down, and it just does it just dumbs it right down. That's usually not enough. I'm usually so confused. I
Scott Benner 21:42
said, Put this more simply, what is colorblindness? Colorblindness is a condition where a person has difficulty distinguishing between certain color and don't dumb it down that far.
Arden Benner 21:53
Said, Okay, idiot,
Scott Benner 21:55
okay, let me go slower. Okay, let's
Arden Benner 21:56
sit you down. This
Scott Benner 21:57
happens because their eyes don't have all the types of cones or color sensitive cells that most people have. Okay, I got it. What did they see? Red, Green. Color blindness. We went through that. How do we know this? There's testing. Why it matters. Color blindness affects how people see the world, and can make some tests, but, but okay, how do those color blind glasses or restore sight? Wait what you've never seen that dude, they
Arden Benner 22:31
don't restore sight. They restore the color. It understands what I mean. Well, it's because, like, mixing colors together, probably, so if you mix like,
Scott Benner 22:40
well, it tells you the lenses are coated with a special optical filter that selectively blocks certain wavelengths of light. Yeah, you're duh. Oh, Wasn't there an episode of new girl about this? No,
Arden Benner 22:51
there was an episode or Winston, like, said he was colorblind. And who was it? Schmidt Nick is like, what color do you think you are? Because His shoes were brown or were green, and they thought he thought they were brown or something,
Scott Benner 23:03
yes, and his clothes are really bad for, like, every season of the show. And then they realized he didn't, he couldn't put his outfits together correctly. Was that not part of it? Something like that? Did they give him the glasses? I think at some point,
Arden Benner 23:17
um, I don't know. I like, I see those on tick tock. Like, they give children the glasses. But I don't know if that was on New Girl.
Scott Benner 23:24
Does that make you cry when they do that? No, it
Arden Benner 23:26
takes a lot to make me cry.
Scott Benner 23:28
I get a little weepy, if they like, well,
Arden Benner 23:31
you know, I could, like, a petal could fall off a flower and he would start crying.
Scott Benner 23:36
Well, like, seriously, when they put the glasses on the kids, it makes me, like, makes me happy. Well, yeah, but I don't cry. Okay? I don't I get weepy. I don't cry like my eyes fill up. Not like I'm not like falling apart. Okay? It tells me who the glasses are, not a cure. Thank you. This episode of The juicebox podcast is sponsored by the only six month wear implantable CGM on the market, and it's very unique. So you go into an office, it's, I've actually seen an insertion done online, like a live one, like, well, they recorded it. The entire video is less than eight minutes long, and they're talking most of the time. The insertion took no time at all, right? So you go into the office, they insert the sensor. Now it's in there and working for six months. You go back six months later, they pop out that one, put in another one, so two office visits a year to get really accurate and consistent CGM data. That's neither here nor there for what I'm trying to say. So this thing's under your skin, right? And you then wear a transmitter over top of it. Transmitters got this nice, gentle silicon adhesive that you change daily. So very little chance of having skin irritations. That's a plus. So you put the transmitter on. It talks to your phone app, tells you your blood sugar, your alerts, your alarms, etc. But if you want to be discreet, for some reason you take the transmitter off. Just comes right off. No like. You know, not like peeling at or having to rub off adhesive just kind of pops right off the silicon stuff really cool, you'll say it. And now you're ready for your big day, whatever that day is. It could be a prom or a wedding, or just a moment when you don't want something hanging on your arm. The Eversense CGM allows you to do that without wasting a sensor, because you just take the transmitter off, and then when you're ready to use it again, you pop it back on. Maybe you just want to take a shower without rocking a sensor with a bar of soap. Just remove the transmitter and put it back on when you're ready. Ever sense? Cgm.com/juicebox, you really should check it
Arden Benner 25:38
out. Okay, so I think you're off track. Personally, I think we need to circle back to this blindness. Okay,
Scott Benner 25:43
okay, so what does a completely
Arden Benner 25:48
because, okay, I don't know how to put this without sounding like a terrible person. Oh, good.
Scott Benner 25:55
Go ahead, if you
Arden Benner 25:59
like, literally can't see anything because you were trying to describe it to me as, like, no input, I think so. Yeah, that's what you were saying. But if that's the case, then the senses that do work on you
Scott Benner 26:15
are like,
Arden Benner 26:18
what you're hearing, your sense of smell, touch, like all that sort of stuff. It's, it reminds me of it like it kind of reminds me of AI a little bit, how, because, you know, in, you know, in Captain America and the Winter
Scott Benner 26:36
Soldier, Captain America and the Winter Soldier go ahead when
Arden Benner 26:39
Steve and Natasha are, like, on the run or whatever, and they go into the facility that's like in New Jersey, and they're they go down to the basement. It's like the computers down there, and it's like the brain of the guy who, like, used to
Scott Benner 26:54
guess work the school, the Nazi guy, yes, and his brain. And they put
Arden Benner 26:58
his brain into a computer or whatever, yes, and he's not really like, he's he, he's like, it's still his brain, like, he's still thinking, like a human, but he just can't see what's going on. Like, it reminds me of that,
Scott Benner 27:12
except, all right, I take your point. A blind person can still feel touch, moving, yeah, obviously, yeah, feel themselves breathe. But
Arden Benner 27:18
I'm saying, like, I just don't understand how you like, what does that mean? Like, oh, I just can't see anything. Like,
Scott Benner 27:27
because is anything black or is anything nothing?
Arden Benner 27:30
But what is nothing, right? That's why. Like, uh, well, this is, like, a really big topic. We'll never, ever talk about this, but that's why, like, the whole idea of, like, where did we come from? Makes no sense to me, because everything comes from nothing, or there's, I guess nothing is the start of everything, or it all comes from something. We don't know what it is, but something has to come from something else, not necessarily. Yes, why? How does it just appear?
Scott Benner 27:57
It just did? No, maybe, maybe it was always there.
Unknown Speaker 28:04
I don't understand that.
Scott Benner 28:05
Where is there? Like, what
Arden Benner 28:07
is going on?
Scott Benner 28:09
See, oh, okay, God, you want to hear what this has to say.
Unknown Speaker 28:12
Not particularly.
Scott Benner 28:13
I'm trying to sit back. But, oh, I made the text bigger, by the way, if you all have a Mac and Chachi, PT, four, Oh, definitely download the app. The app is awesome. The experience of complete of a completely blind person can vary depending on whether they were born blind or lost their sight later in life. People born blind do not have visual memories or references.
Arden Benner 28:36
See, that's so interesting. Do you
Scott Benner 28:39
know what people love to say all the time about you being diagnosed early, what? At least she'll never remember what it was like to not have diabetes. Do you think that's helpful? No, I
Arden Benner 28:48
don't think it's helpful. That makes me really like, Oh, that makes yourself i Yeah, that's unrelated. We'll get into something later. Okay?
Scott Benner 28:57
They rely on their other senses, hearing, touch, smell, taste very good. You got them all right earlier to understand and navigate the world. Now spatial awareness. It says spatial understanding is built through auditory and tactile information, so feeling, touching and hearing sounds bounce off of other things, right? Yeah,
Arden Benner 29:16
a lot of animals are built that way. Bats, bats, well, bats can't see in the light.
Scott Benner 29:24
Wait a minute. What do you mean? Bats can't see in the light. Can't
Arden Benner 29:27
they only see a night,
Scott Benner 29:28
don't they use sonar. That's what I'm saying. All right, we'll get to that. Hold on a second. Should we put that on the list? How do bats fly? No, no. All right, they develop mental maps of their surroundings using sounds, textures and physical movement. All right, that's cool, but that's not what they see. They may also the word see is improper. It's experience. How do you Okay? Here's
Arden Benner 29:54
okay. If you're born blind, they're saying that like you don't have the what? Is it like the images, or whatever that, like other people would experience through time? Yeah, how do you imagine, right?
Scott Benner 30:05
I don't know. Through touch. That makes
Arden Benner 30:09
no sense to me, because, you know how, like, I don't know if you were the one who agreed with me, but someone was saying that. Like, if I say, like, think of an apple, you can't actually picture, like, a real apple.
Scott Benner 30:21
Oh, I don't, I don't. I remember that conversation, but I don't remember that.
Arden Benner 30:25
It was with Liv, and she was like, Oh, I can't picture an apple. But like, if you told me to close my eyes and picture an apple, like, I just see, like, a real apple, and
Scott Benner 30:32
I don't see anything. Yeah, oh, that's right, you're and my brain works also, you have an internal monolog, and I don't, yeah, well, that should be on the list. Hold on a second.
Arden Benner 30:41
No, Dad, do that later. No, but it's gotta we'll forget. Is this gonna get cut out of the podcast? Because I feel you're wasting time.
Scott Benner 30:47
There's plenty of time. It's a podcast. There's time people don't care that much about us. They might. So it's not us. It's about today. It's about what blind people experience, which we haven't gotten to yet. You're taking a while. Come on. Okay, people who become blind later in life retain memories of what things look like. So that's your answer there, like, Well, no,
Arden Benner 31:06
I understand. I'm talking about people who have never been able to see anything in their whole life. That is where I'm at right now, I understand people who have been able to see things and they lost their vision. Okay,
Scott Benner 31:17
so then let's then let's ask. Let's ask. So what if anything does a completely blind person who was born without sight experience in their mind?
Arden Benner 31:40
I feel like you should be asking the question of like, describe it to me as like a metaphor. Okay, well,
Scott Benner 31:47
let's see what it says here, and then that's a good follow up. A completely blind person who was born without sight does not have visual experiences or see in quotes in their mind, in a way that sighted people that we had. Here's an explanation of I mean, like, why is it saying things that are obvious, they do not form visual images, colors or visual scenes. Their mental imagery and experiences are based on other senses. Yeah, I hear that. Do you have access to a person. Oh, you
Arden Benner 32:22
know what you should ask? It to do, draw us a photo of what a blind person sees.
Scott Benner 32:28
Okay, do you have access to a person's description of what they experience having never been able to see? Is it like static? It says there are descriptions available from individuals.
Arden Benner 32:48
Okay, let's go. I want to hear them all right, give their names. Give credit where credit's due.
Scott Benner 32:54
Daniel Kish, this is a personal account. It says for his echolocation skills. Daniel describes how he uses clicking sounds with his tongue and listens to the returning Echo to navigate. Damn. That's impressive. He explain, I walk into walls and I can see everything I think
Arden Benner 33:11
I did yesterday, and I had two cookies in my hand while I was doing that's what I was focused on.
Scott Benner 33:19
You walked so you were trying not to drop your I got home,
Arden Benner 33:22
I went right to the fridge. I grabbed two cookies. I went right upstairs, and I just walked into the wall. Tell people what cookies. I don't even know what they're called, el fudge, double stuff. Wait, it's el fudge. I thought it was elf. Yeah.
Scott Benner 33:37
El fudge. Yeah. But E, E, L, F, fudge. I fudge, wow,
Arden Benner 33:44
never put that together. I never look at that box long enough it's open.
Scott Benner 33:49
It allows him to build a mental map of his surroundings. But what? How does he know which ways? Oh, my God, that means he can click and figure out his orientation in the room. That's impressive. It's like Daredevil, it is, except I don't think he clicks. Uh. Rebecca Atkinson, in her writings, Rebecca describes how she image imagines characters and settings and books through detailed auditory and tactile descriptions. Her experiences of the world is rich with non visual details. It's still not asking our basic question. Yeah, I
Arden Benner 34:21
know. I don't think you're getting an answer to this. That's what I'm saying. Okay,
Scott Benner 34:24
are they seeing black the nothing
Arden Benner 34:33
or no? What? Don't say nothing, because we don't even know what that means. Yeah,
Scott Benner 34:37
I know that, but that's what we're trying to figure out. God, you're going in circles. What are you talking about? We're not we're almost at the end of this. We're figuring it out if you're not not black or dark, the experience is not like seeing black or darkness. It is the absence of visual perception altogether. I don't know what that means. I. OmniPod. Okay, the brain does not receive or process visual signals from the eyes enhance other so I'm going to just ask it this the absence of visual perception altogether. Put that in two simple terms and draw a picture of it, won't it be interesting to see what it thinks it looks like? I just said that. I know you said that. That's why I'm following up on it. We're
Arden Benner 35:29
doing a great while we're reading. It makes you think, like, if, if I said, like, Are you kidding me?
Scott Benner 35:35
That's not a picture like a Ben diner. What it basically did was make a picture of, like somebody. It's a visual description of the whole conversation we've had basically. All
Arden Benner 35:47
right, wait, let me, let's just move on to the what I was gonna say, because that makes me very upset. Okay, when it does something wrong, I like to tell it it's wrong. You say, No, I'll just be like, that's not what I asked. Like today, I asked for a quote from a short story, and it does this thing to me where it just makes up quotes. And then I have to say that is literally not a quote from the story. And it goes, oh, sorry on my error, but it does it every time it cannot quote a story to save its life. Sometimes I
Scott Benner 36:12
ask it to make pictures for the blog, and it just does it over and over again. I'm like, please put their nose on their face. And it goes, Oh, I'll redraw it. Redraws it exactly the same way, yeah. So I said define the absence of visual perception altogether. It means that a person who is born blind does not see any Yeah, I know that's what I think we're done with this. Yeah, we're done so there's no answer. We're never going to know what's really happening. You can't know that. But if you ask a person who is completely blind, been blind since birth, they won't have words to describe it, either, right?
Arden Benner 36:42
Because they've never seen something or experienced something. Like we were all about imagination, and if they don't have imagination, then we can't communicate with each other that way,
Scott Benner 36:54
like we didn't get an answer. Do you think listen, if you're listening and you've been blind since birth, and you'd like to come on and talk about it, please? We'd love to have that conversation. You would do that with me, right? Yeah,
Arden Benner 37:03
it's just, I don't get it. It also makes me think, like, if I said to you, like, imagine being deaf, you like, feel like you can imagine it, but you actually can't, because even when you're hearing nothing, you're hearing something, you hear space and air and everything. So we've never actually heard nothing,
Scott Benner 37:19
right? Even now you're feeling something and you don't realize it, yeah, like you're feeling your clothes, yeah, or your hair, or someone's calling, yeah? Nicole, a phone call. Who is it? Oh, it's Sanj. Go ahead and answer it. Tell her she's on the podcast. Absolutely. Put her on speaker. Tell her we're recording a podcast, and tell her to say, Hey,
Arden Benner 37:39
um, hey, I we're recording a podcast right now. You're gonna probably be featured on
Scott Benner 37:47
it. Yes, you're now a guest star.
Arden Benner 37:52
We were actually, no, you should not follow your Instagram. We were actually just talking about you in the beginning. Oh, my God, wait. I
Scott Benner 37:59
thought we were talking about live in an apple. No, we
Arden Benner 38:01
talked about Sanj in the absence of light. Oh, that's right.
Scott Benner 38:04
Remember that Sanj? Hold that up, Jordan, yeah, I was just calling you to tell you to look at a Tiktok I sent you, and then to read the comments, because it's gonna make you laugh. Okay, well, I'll do that in a little bit. Did you say I love you? Yeah, I
Arden Benner 38:20
say that all the time. Every time we hang up the phone, we say that
Scott Benner 38:22
that's so nice, but tell people you have trouble embracing each other a real in person hug. No, that is not related to this podcast at all. Okay, we can't talk about that. No. Okay, all right. So wait, what were you just saying?
Arden Benner 38:34
I don't know.
Scott Benner 38:39
Okay, so, oh, you were talking about not being we were talking about that something's always touching. You feel something touching you? Well, yeah,
Arden Benner 38:47
oh, like, this doesn't make sense to me, you know, like, you go to the dentist and they, like, put the numbing, whatever in your mouth, or like a shot, and you're like, Oh, I can't feel my mouth, but you you can feel that you can't feel anything.
Scott Benner 38:58
Yeah, it's blocking the the receptors, the pain receptors, yeah,
Arden Benner 39:03
but you can still feel it.
Scott Benner 39:04
Can I say something crazy that you like going to the dentist? Oh, I wasn't gonna say that, but I do like going to the dentist. I sleep through like, root canals, yeah? That's
Arden Benner 39:14
what I was like saying, Yeah, but I hate the dentist. So relaxing.
Scott Benner 39:17
I don't know what about it I find so relaxing, but that's not the point. The point is this, you know, there are microorganisms all over your skin, right? I know, and they're moving, yeah, I know. Do you ever like, get, like, an itch and think that must be one of those little bugs moving around?
Arden Benner 39:33
No, but sometimes my chest hurts and I think I'm gonna die. Wait what I think? I thought you were just talking about feelings we have and what we think is gonna happen. No, but
Scott Benner 39:42
tell me about your thing. Oh,
Arden Benner 39:45
like, sometimes I'll hurt my side, and I'm like, oh,
Unknown Speaker 39:50
like, this is it? Yeah, I'm
Arden Benner 39:51
like, what I
Scott Benner 39:58
was saying is there's like, micro. Was living on you. Sometimes
Arden Benner 40:01
unrelated again, sometimes like something would like, maybe a muscle jumps or something, and I'm so sure a worm is living in me, oh,
Scott Benner 40:09
like in Robert F Kennedy's brain, he had a parasite. It was eating his brain. It's pretty cool. Okay, wait a minute, but I know this has nothing to do with blindness, but, well,
Arden Benner 40:21
I feel like we couldn't get our answer to that, so we had to move on. Can
Scott Benner 40:23
I feel the microbes Stop?
Arden Benner 40:26
Don't ask at that on my skin. What about the fact that, like you okay, you know what? I'll I'll wait.
Scott Benner 40:33
Microbes such as bacteria and viruses are so small they are invisible to the naked eye and too tiny to be felt. Bacteria, for example, typically measure between point two and two micrometers, a micron in diameter, and sensory thresholds. The human skin is sensitive to touch and pressure, but only within a certain range. Microbes are far below the threshold of what human skin can detect, okay, wait, wait, but that means that there's a colony of bugs running around you right now, you're not aware of it.
Arden Benner 41:02
Wait, let's talk about something else.
Scott Benner 41:03
Are we walking on something and it doesn't know we're there? That's what I was just gonna say. Okay, go ahead.
Arden Benner 41:08
Okay, right? So like Earth, we all interact with each other, and we're like a civilization, right? And we do all these things. So is it like that on our body with like, like, are we someone's planet? Yeah, of course, right, yeah. And then your belly is a solar system or for something like biome, like gut biome. And then is that also a solar system for something else? And is it never ending? So
Scott Benner 41:40
what if the planet is just an atom, we're all living on it, and the black space around it is just the inside of a giant's belly? Well,
Arden Benner 41:49
I mean, yeah, sure. I mean, I always thought about that like we're literally just a speck of dust, right on so like that. It's everything's really not that big of a deal.
Scott Benner 41:57
Is it possible that if because the microbe doesn't look up off my elbow and go, Oh, my God, I'm on a giant. It doesn't see anything. It's perception that, because if that was possible, then we'd look up and see what was up there.
Arden Benner 42:13
Um, well, it's not living the same life as you. Yeah.
Scott Benner 42:15
But the expectation here is that if, if there's, if there's a microbe on my skin well,
Arden Benner 42:21
but I'm saying it's not in the same reality you're in. So like, their world might not work the way our world does.
Scott Benner 42:27
You get into some like, like Ant Man and the Fanta. What was that last Yeah, the quantum mania, whatever you make the
Arden Benner 42:35
quantum realm. That is that that was called the movie. I don't really know. It's like, yeah, it's like, Ant Man, quantum, something, something.
Scott Benner 42:41
But I'm saying, like, if, if the if the microbe doesn't know I'm here, then what am I on? And what don't I realize
Arden Benner 42:48
it's not true that we don't know that. Like, space is there?
Scott Benner 42:53
Do you think microbes are shooting rockets up trying to get off of the surface, and they can only get so far?
Arden Benner 42:59
And what if that's like, you're like, Oh, my stomach hurts because the rockets are launching. Yeah, you get a cramp.
Scott Benner 43:07
I'm sure that's not what that is. Okay? All right. So let's go back to our initial question, your initial question, what do blind people see or experience? And do you have any answer to that question? No, so I don't we still don't understand what that is. So say, I don't understand what blind people
Arden Benner 43:24
say, No, I don't have to say such a thing because
Scott Benner 43:27
we need, we need content for our social media. Don't you understand? No, I don't understand. I don't even understand that. Tell people what your nickname is around here.
Arden Benner 43:41
What is my nickname? What
Scott Benner 43:42
are you not? What am I not? Wait, I
Arden Benner 43:45
have a lot of nicknames. I don't know which one you're referring to. When sometimes
Scott Benner 43:48
we say Arden is not, uh oh, you
Arden Benner 43:51
say this. Go ahead. You
Scott Benner 43:51
tell them Arden is not a Word Wizard, because sometimes words confuse her.
Arden Benner 43:55
But I actually made that up. You said they like they caught me. I didn't know what I was saying at one point, and I was like, Oh, I was like, okay, like, I'm not a Word Wizard. And ever since I've said that, like, it gets said every day,
Scott Benner 44:08
all right, Arden's not a Word Wizard. We gotta go. Thanks for listening. Wanna say goodbye, bye.
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