Scott Benner 9/11/24 Scott Benner 9/11/24

#1303 Two Cans of Beans

Rebecca and Mel are mother and daughter T1s.

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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.

#1302 I Don't Understand... Arden One

Arden and Scott try to figure out what a blind person sees.

+ Click for EPISODE TRANSCRIPT

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.

I want to thank the Eversense CGM for sponsoring this episode of The juicebox podcast. Learn more about its implantable sensor, smart transmitter and terrific mobile application at Eversense cgm.com/juicebox, get the only implantable sensor for long term wear. Get Eversense the conversation you just enjoyed was brought to you by us. Med, us. Med.com/juice, box, or call 888-721-1514, get started today and get your supplies from us. Med, a huge thank you to one of today's sponsors, gevok, glucagon. Find out more about Chivo kite. Open at gvoke, glucagon.com. Forward slash juice box. You spell that, G, V, O, k, e, g, l, U, C, A, G, o, n.com, forward slash juice box, the diabetes variable series from the juicebox podcast goes over all the little things that affect your diabetes that you might not think about, travel and exercise to hydration and even trampolines. Juicebox podcast.com, go up in the menu and click on diabetes variables. Thank you so much for listening. I'll be back soon with another episode of The juicebox podcast. The episode you just heard was professionally edited by wrong way recording, wrongwayrecording.com, you.

#1301 Blue Book Part II

Tim is a 30 year type one. His son, daughter, grandfather and uncle have type 1 as well. Two Part episode. Part 1 is episode 1299.

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