Scott Benner 12/19/23 Scott Benner 12/19/23

#1089 Freeze Dried Skittles

Robin has type 1 diabetes, Hashimoto’s and a bit of land.

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Scott Benner 0:00
Hello friends, and welcome to episode 1089 of the Juicebox Podcast.

On today's podcast I'll be speaking with Robin she's 61 years old, and has had type one diabetes for just over two years. And I cannot wait for you to find out why this episode title is freeze dried Skittles. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. When you place your first order for ag one with my link, you'll get five free travel packs and a free year's supply of vitamin D. Drink ag one.com/juice box. 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 juice box at checkout that's juice box at checkout to save 40% at cozy earth.com If you're not already subscribed or following in your favorite audio app, please take the time now to do that it really helps the show and get those automatic downloads set up so you never miss an episode

A huge thanks to a longtime sponsor touched by type one, please check them out on Facebook, Instagram, and at touched by type one.org. If you're looking to support an organization that's supporting people with type one diabetes, check out touched by type one. Having an easy to use and accurate blood glucose meter is just one click away. Contour next one.com/juicebox That's right. Today's episode is sponsored by the contour next gen blood glucose meter.

Robin 2:03
Hi, Scott. My name is Robin and here we go. Nice

Scott Benner 2:08
Robin how? Let's see how old are you?

Robin 2:11
61.

Scott Benner 2:13
And how long have you had type one?

Robin 2:16
A little over two years?

Scott Benner 2:17
Wow. You were diagnosed when you were like 5859? Yep. 59. Wow. And you're 61 Now other autoimmune in your family. Where do you have any other autoimmune? Yes,

Robin 2:30
I was digging through my charts. You know, my online where you can go in and look. And I've had it doesn't say how she motos it doesn't say it says actually in my in my chart, autoimmune hypothyroidism. And I've had that since I was 27. Okay,

Scott Benner 2:49
have you been taking Synthroid the entire time? I have. Do you have any problems at all? With medications? needing to be adjusted symptoms returning anything like that through your life? Yeah,

Robin 3:03
every so often and I can tell when my thyroid is is acting up or my medicine is off and I just go get a you know bloodwork and we adjust my meds.

Scott Benner 3:12
What sticks out to you is something that says to you, oh, something's wrong with my thyroid medication.

Robin 3:17
I get it. I'm tired all the time. Because that's not me. If I'm tired all the time, then I know that that something is off.

Scott Benner 3:24
Okay. How many times through your life? Do you think that happened? Oh, probably for maybe four or five. Have you had children? One one was ever or was it around the pregnancy at all?

Robin 3:36
Yep, I was 27 when I had him. Oh my goodness. That

Scott Benner 3:40
kid gave you Hashimotos okay, we figured that out now. We just was it? Was the Hashimotos diagnosed after the birth? Yes. That's what happened to Kelly. Really? Yeah. She made Arden? Well, I think yeah, I think it was, I think it might have been Arden birth that really got her. But I'm trying to think back. If they asked her one day, I'll have her on the podcast. I'll ask her. They'll be cool. Yeah. And we'll find out if it started happening sooner than that. We can look at pictures and try to figure it out that way. Yeah. Okay. So that's how you've been handling that. Did you put the Hashimotos together with the type one? Being alone? No,

Robin 4:25
not until. Not until I started listening to your podcast. I did not. Okay.

Scott Benner 4:30
And is there other thyroid or issues with autoimmune in your family?

Robin 4:35
Yes.

Scott Benner 4:36
What do you got? My

Robin 4:38
mom has Hashimoto and she has scleroderma. And my paternal aunt had scleroderma. And my paternal other aunt has Hashimotos there's something out Raynaud's My mom doesn't have scleroderma. She has Raynaud's

Scott Benner 5:04
your mom has right. Okay. Yeah. The sclera dome as the like on the skin, right? Yeah,

Robin 5:11
your your skin gets real hard like my aunt's fingers were all deformed she couldn't. And then she couldn't like pick a pencil up her fingers were just gnarly and cold. Like my mom has to wear gloves when she's like getting stuff out of the freezer. Because it's painful. It's extremely painful. My aunt also had Raynaud's along with the scleroderma. Wow.

Scott Benner 5:36
So if your mom's hand starts to get cold, it just runs in that direction and becomes painful and she can't stop it right away. Exactly. You can't back up the sclera DOMA also like connective tissue, I think too. That's where the kind of like I don't, I don't know a lot about it. Yeah. About a welfare look into it while we're talking. Okay, so I mean, it's fair to say 59 years old, you thought you were cruising, right?

Robin 6:01
Oh. Watch my language. If

Scott Benner 6:07
you curse, we'll just take it out. Don't worry. So So tell me a little bit about being diagnosed. What was the first thing you noticed? And what got you to the doctor?

Robin 6:16
extreme weight loss, I had lost almost 30 pounds. And people kept telling me go to the doctor. No, I probably have cancer. I'm not going to the doctor. But my mom got me to the doctor. So yeah. So the did you know, I'm losing all this weight? So she's like, Oh, we're gonna have to, you know, adjust your it's probably your thyroid. So they did the blood work came back that my agency was 12.9%. Typical, older person diagnosis put me on Metformin. That made me extremely nauseous. So I went back. Let's see, I got a timeline here, march 1 of 2021. I started the Metformin on March 16. I went back and you can get any more. So they gave me Januvia. And I was fine on that. And then on April 1, I had my first meeting with my diabetes nurse educator. And she, she's reading all the stuff talking, she's like, you are not presenting as a type, type two, I think you need to get some testing done. So I went back to the doctor on April 2, that was the next day. So she gave me two jails, which is a Basal insulin, and started me on 15 units. That was way too much.

Scott Benner 7:38
That was way too much. Yeah. Were you experiencing? re experiencing any kind of a honeymoon that you're aware of?

Robin 7:45
Not that I'm aware of. Okay.

Scott Benner 7:47
Just 15 years just in general is to me, You know what, Robin? It surprises me. Of course, I know you through a tiny little picture right on Instagram, Facebook that you chose probably the way we all chose our pictures like this is the best picture I've ever taken. I'll use this one. But But I think if he was a slender person, am I

Robin 8:07
yep, I was I was slender. So 30 pounds was a lot. Yeah, it was probably only like 108

Scott Benner 8:14
Oh, okay, that's what I was trying to get at. And so you you really didn't think you had cancer, didn't you? Oh, boy. How come you didn't want to go to the doctor?

Robin 8:25
I don't know. I know Knowledge is power. But ignorance is bliss. You know?

Scott Benner 8:30
Gotcha. Yeah. Baby, I run right to the doctor.

Robin 8:37
So so the 15 units, you know, there's a, there's a diabetes specialist in the clinic that I go to. She's mostly deals with type twos. But I called her and I'm like, I'm, I mean, one day, I was done working in the garden. And I said, Wow, I feel pretty funny. And that's like, I don't know how many yards it is. I'd have to ask my husband but it's quite a hike back up to the house by the time I got my contour out. And I was at 26. So So I called I called the clinic. I'm like, I think I'm taking too much insulin, so I didn't because I didn't have an endo appointment until July 19. Yeah, that was as soon as they could get me in. So so

Scott Benner 9:17
you're just shooting the Basal insulin at that point? Yeah, yeah, but that was way too much. I mean, I mean, are you still around 110 pounds or have you put some weight back? Well,

Robin 9:29
I initially once I got the Novolog and in the to jail, I got back up to about 97 for about four or five days and I'm stuck at 85 pounds. I am stuck here. I eat and eat and eat and I cannot.

Scott Benner 9:48
Robin Robin you went from like 130 pounds to 85 No 108 108 Excuse me to 285 Yeah. Wow. Wow. Oh, wow. Yeah, yeah, that's uh, how tall are you? You must be three feet tall.

Robin 10:06
Nope, I'm too tall for my weight. I'm five foot one. Okay.

Scott Benner 10:08
Wow. And so you would like to have more weight? I'm trying.

Robin 10:12
Yeah. Okay. Yes. That's interest. 20 pounds, it would be fantastic.

Scott Benner 10:17
Is it possible you've got too much Synthroid.

Robin 10:23
Could you be by no by get tested? Every six months? I get tested for the, the thyroid and a onesie.

Scott Benner 10:31
Yeah, that's excellent. By the way. I'd like to say I hope everybody with a thyroid issue is getting tested every six months. Wow. Okay, well, good luck, but they take you out to dinner and see what we can get accomplished. Okay, so they adjust your Basal insulin, you finally get to the doctor in July. What is I mean, that's kind of the real beginning of your journey. I guess. What, what did you Yeah, yeah.

Robin 10:53
Yeah. Because she walks in. She says, any concerns? I said, I need to, I need to get into my and she said, Don't worry, I'll make you fat. Like, okay, here we go. She gave me Novolog. So take this 15 minutes before you eat. That was, I was I'm amazed that people aren't told to Pre-Bolus because that's one of the first thing she said to me. Um, I was on a one to 40 ICR insulin to carb ratio. And I think I was down to nine units of TJ Oh, by then I just kept lowering myself down and down. I don't Yeah, that was gone way too low. So and

Scott Benner 11:29
do you get a pump Are you injecting contour next one.com/juice box, that's the link you'll use. To find out more about the contour next gen blood glucose meter. When you get there, there's a little bit at the top, you can click right on blood glucose monitoring, I'll do it with you go to meters, click on any of the meters. I'll click on the Next Gen. And you're gonna get more information. It's easy to use, and highly accurate. smartlight provides a simple understanding of your blood glucose levels. And of course, with Second Chance sampling technology, you can save money with fewer wasted test strips. As if all that wasn't enough. The contour next gen also has a compatible app for an easy way to share and see your blood glucose results. Contour next one.com/juicebox. And if you scroll down at that link, you're gonna see things like a Buy Now button. You could register your meter after you purchase it or what is this download a coupon? Oh, receive a free Contour. Next One blood glucose meter. Do tell contour next one.com/juicebox head over there now get the same accurate and reliable meter that we use.

Robin 12:40
I didn't get my get my time when I got my Omnipod on September 30 of 2022. So I was MDI until then,

Scott Benner 12:48
okay. Was it tough being diagnosed during COVID? No, no. didn't change anything for you as doctor's appointments or anything like that?

Robin 12:57
No, everything was over zero. Okay. Oh, okay.

Scott Benner 13:01
Wow, you were no kidding.

Robin 13:04
Except the end Oh, my endo appointment was was in person.

Scott Benner 13:07
Okay. That's interesting. That is really interesting, actually. Okay, so you are shooting, you've got your basil down, things are starting to go better? Do you have them? I'm interested in your I don't mean this like this problem. But at your age, right? We've got like, six decades of life experience. Is it? Is it hard to find out you have type one? Well,

Robin 13:31
I lived for what a month as a type two. And that sucked in I have written in the group. I'd rather be a type one, type two. And people are like, Wow, are you crazy? I mean, I can eat anything I want as a type one as a type two. I was struggling. So I guess until you have lived it. You don't get it. But yes, it's hard.

Scott Benner 13:55
You had trouble because of trying to manipulate your diet. Yes, yeah. Yes. You find yourself giving things up. And you wanted them back. Like that kind of stuff?

Robin 14:06
Yeah. I felt like I had to give up everything. Just to keep my blood sugar down. And yeah, I was walking and walking in Washington and yeah, no, I'll take the insulin. Yeah,

Scott Benner 14:21
how about that, but it's an interesting perspective. I've also I'm also having a lot of experiences with food lately, because I'm taking we go V for weight loss, right. And at the same time, my wife is taking it my brother is on ozempic for his type two. And so like I'm watching a lot of people who I have close contact with tell stories about the impacts of food and things that they didn't even know were happening in their life prior and then suddenly you take this medication, which is sort of, you know, turns a switch in your brain kind of makes you not hungry. I mean from for us so far, when you get into the higher doses, foods stops having the pizzazz that it had for you before. Like, if there was a thing that you used to eat, and your brain was just like, oh my god, I'm so happy. Like, if that was happening to you, it kind of gets turned down. Like even the flavor of food, like it feels like it's muted a little bit, right. And I mean, I don't know, the technical side of it, if my dopamine is not spiking as much when I'm having these things, or if this is what's happening to other people. But once food doesn't have that kind of sway over you, it's interesting to see people go Yeah, I don't care if I eat that again. It's really, really something else actually like and then to not have that help. And then be just be told, stop eating that. I can see why people can't do that. I really, really, you know, it's it's interesting, and I'm not surprised that you had that experience. But anyway, I'm glad you got the correct diagnosis. That's fantastic. It didn't take too long for them to figure it out.

Robin 16:02
No, nope. If it wasn't for the diabetes nurse educator,

Scott Benner 16:07
might have been longer. It might have been longer. Yeah. So okay, so not so easier to be a type one that a type two for you, because it meant you could just start eating the things you wanted to eat and then covering them with insulin. Are you having success with that? Like, how was how was your health than your outcomes? Well,

Robin 16:27
I Well, my outcomes are great. Let's see. Oh, I gotta I gotta interject here a little bit. Yeah, I did. I did use the in pen between MDI. Okay, I know when I did use the M pen. Thank you. I would suggest that to people to go from MDI, just to a pump. I think that putting the in pen in there helped me so much to know how to use my my pump. Yes, it's in pen is amazing. Good

Scott Benner 17:03
bridge then for your Understand.

Robin 17:05
Yes, yes. Yes. So yeah, but yeah, my my agency is 4.90. Just

Scott Benner 17:13
what do you when you said you were when you said I couldn't eat the things I wanted to eat? What were the things you want to eat?

Robin 17:21
Just everything. I mean, I eat ice cream every night before I go to bed. All of a sudden, I couldn't have my ice cream. I've been ice cream every night before I go to bed for 3540 years, you know? So

Scott Benner 17:33
what is the best ice cream? I

Robin 17:34
live in northern Michigan so we have Hudsonville ice cream.

Scott Benner 17:39
What's your favorite flavor? It's

Robin 17:40
it's got chunks of brownies and chocolate ice cream with brownies. With Hershey syrup and cool with

Scott Benner 17:49
that Robin I have to ask do you like the ice cream? Or do you prefer the chocolate?

Robin 17:53
I prefer the ice cream.

Scott Benner 17:54
Okay. All right. So the the ice cream is helping you deliver all the chocolate.

Robin 18:01
I love are all the chocolates helping me deliver the ice cream

Scott Benner 18:05
every night. Seriously, you have it every night.

Robin 18:09
Yeah, wow. Well, well the last few nights because it's strawberry season is ending here. So I've been having Strawberry Shortcake but I'm at a strawberry so I'll go back to ice cream tonight.

Scott Benner 18:25
I'm now trying to see if this is some like amazing ice cream that I don't know. Oh yeah. Hudson. Is it Hudsonville? Yes. Hudsonville ice cream. Oh, they've got a nice website.

Robin 18:39
Oh, I've never never been

Scott Benner 18:42
Have you tried the blue moon? What is that? Oh, yeah,

Robin 18:44
Blue Moon. That's just that's and that's a blast from my childhood. It's just sherbet. It's I don't even know what flavor it is.

Scott Benner 18:56
I'm trying to figure out which one you eat. brownie batter cookie dough. Wow, that does look good. Doesn't it? Hold on a second. Double Chocolate Almond? And ice cream is terrific. I don't know who thought of it but genius. Seriously,

Robin 19:13
I made homemade ice cream. July 4.

Scott Benner 19:15
Did you I'm doing that now at home. I'm using the creamy maker Arden got it for me for Christmas last year. Oh neat. Yeah, I made some strawberry ice cream last weekend. It's really creamy. And like you stole real strawberries and everything's really good. Anyway, I'm gonna get I'm gonna get distracted with the ice cream conversation. But I think the I think the interesting thing here is you're keeping a 4.9% a one C and you're having some sort of like a like a dessert every night. It sounds like so what what is it you're doing to keep your agency that way?

Robin 19:51
I have my alarm set. Lower. I'm my my ranges 80 to 120 and I'm pretty successful at keeping an eye in there. I mean, of course I go high or I go a little low, but like, I know everybody does. But I'm, I'm probably if I do like a 90 day clarity thing, I'm probably 85% in range. In my very my, what's that called? Standard deviation is? I think the last time I looked it was 19.

Scott Benner 20:26
Holy, Robin. Good job. Thank you. Oh, wait a minute. I didn't know you're gonna say something nice. I wouldn't have talked to over you say it again.

Robin 20:39
I said that's because of you. Oh,

Scott Benner 20:41
I'm so happy to hear that. Thank you very much. I I'm touched, really. And I think the ice cream company owes me something. Because without me, it sounds like they'd be out a fair amount of money from you. Probably. So you're just, you're just doing the thing is your Pre-Bolus and your meals, you are setting your alarm. So you hear if you're getting high. You have good settings. And that's it. Right? You're not really doing much else. And I'm looping. You are you're using a loop? Yep. Okay,

Robin 21:11
I didn't I didn't build it myself. And I told you I was gonna say this on here. But I do hire an outside company called type one pal. Yeah. Or T T one pal. And they're fantastic. They don't have to worry about anything. I just give them their 50 bucks a month. And they just do

Scott Benner 21:29
everything. Yeah, yeah, I have no trouble with you mentioning it. Absolutely not. I like managing a face. I

Robin 21:34
wasn't I wasn't gonna buy a Mac and try to build this thing myself. I'm, I could probably but I wasn't gonna

Scott Benner 21:42
$50 a month you'd get to a Mac in a in about a year and a half probably. Right. With that, so how long have you been looping

Robin 21:52
since November 2 of 2022.

Scott Benner 21:55
Okay, that's a really listen, no matter how you're doing it a 4.9. It shows that you're paying attention in my opinion. It's that you're, you're responding before things get out of hand. And you're not overtreating lows. Like that's really what, what a lower emcee says to me.

Robin 22:13
Yes, that's, that's, that's the main thing that parents need to hear is don't over treat those lows. Because once you shoot up to 300, because you got scared because your kid was at 50 You know, don't over treat those lows. Because once you get up to 300, then it's gonna take you hours to get

Scott Benner 22:32
back down. Ya know? 100% It's, it's not my

Robin 22:36
husband's like, Why are you only eating one gummy bear? And what is that?

Scott Benner 22:40
We're gonna find out. Yep. Well, Arden went out the door last night at I don't know, 1010 30 just to run her friend home, just drive across across town. And you know, it's funny how it happens. Sometimes we just eaten. Arden's been changing our supplements a little bit. So things are changing for we were starting to see her insulin needs are changing, like she's been home a little longer now from college foods, you know, better and better over weeks. And she's probably a little heavy right now on our insulin to carb ratio. And so she's like, I'm just going to run her home. I'll be right back. And we hear Beep, beep beep and I was like, Ah, I said, Well, do you have a juice with the it sounds like you're low. And I pulled out my phone. I said, Hey, you're actually 63. And there's like a diagonal down arrow here. And she goes, Okay, so she grabs, she opens the gummy bear jar. And it doesn't count them even. She just reaches in and pulls them out and with a little bit of precision grabs out of her hand, puts the rest back in the jar, pops them in her mouth, and she leaves. And I'm like you have a juice with you. And she was I do and she goes, I'll be fine. I'm like, okay, so they get in the car drive away the next reading on the Dexcom g7. Now, by the way, is a level 60 blood sugar like so the down arrow stopped and it's 60. And then she hung out at her friend's house and they talked in the car for a while they're making big plans, you know? And then she went back up to 83 and it leveled out. I was like, wow, look at that. Look how easy that was, you know?

Robin 24:14
Yeah, just don't overdo it. You can't get scared and just start eating the refrigerator. The kitchen

Scott Benner 24:21
I think is turn. Yeah, that's how they say it right? Yeah, it really is. So

Robin 24:24
I understand I get it. But I guess with With practice, you'll learn. You don't get so scared.

Scott Benner 24:33
You can tell the difference. You can also tell the difference from Hey, I got a little low to this thing is crashing through the floor. You can write Yeah, like when when we

Robin 24:45
mean I've been scared before when I was 26 Yeah. That was scary. But the house looks far away. What's that?

Scott Benner 24:55
I said Your house looks pretty far away. I imagine when you felt like that.

Robin 24:58
Oh man. Yeah. Yeah, I'm

Scott Benner 25:01
not saying don't correct things not saying, you know, not saying you're 75, two hours down, you're like, I'm just gonna pop a gummy bear in here and see what happens. Like, you have to understand the circumstances around your low. But it was just interesting to watch her. She kind of just assessed everything like she, she had a big meal. She was aggressive about it, there was a lot of rice with a meal. So she was aggressive. And then she knew how she felt like you could even see or, like, pause for a second and assess herself. Like it was really interesting, really interesting. She's like, I don't feel low. And I'm like, okay, and then she's like, you know, gummy bears like this good. And I'm like, You want to wait a minute? She goes, No, I'm okay. And I'm like, All right, like, so that's a big thing. Like she's getting in a car, you know? So yeah, you know, double check. There's a juice right in the door pocket. She's got a friend with her. I'm like, alright, well, I mean, she's gonna have to live her whole life. So you know, right. Need to know how to figure all this out. Well, that

Robin 25:57
just takes time. It just takes time. Arden by now should know exactly. Exactly how to do it. Ya know, it's

Scott Benner 26:05
really interesting. Especially

Robin 26:06
you're hanging out in Chicago.

Scott Benner 26:10
Oh, yeah. Wherever she is in college, Chicago. And yeah, Chicago was one of the places she was considering going. I think that's how it popped out of her mouth. That's why

Robin 26:18
we that's why we say it like that. Yes. Yeah. She's

Scott Benner 26:21
like, she did it on the podcast, right? She's like, tell them tell those people. She said that I go to college in Chicago. I was like, Okay, your people. Yeah, your your people tell you people that I'm like, they're not my people. They're their own people. That's just very funny. Okay, so, I mean, you sound like you're doing terrific. And I'm appreciative that the podcast helped you. How did you find it?

Robin 26:49
Because you are I found the podcast in November of 2021. So I think I went on Facebook and was looking for diabetes groups, type one groups and found yours. Found the group first.

Scott Benner 27:06
Okay, so you were on Facebook first?

Robin 27:08
I thought, yes. I found the group November 2021. And then while chatting in there, I'm like, wait, what podcast? Tell me about this podcast. So I don't remember which one I listened to first. Probably whatever one popped up. When I opened the pod, you know, the app. I probably listened to that one. And then I went back to number one. And I've listened to every single one of them. And most of them twice. Some of them three and four times.

Scott Benner 27:35
Wow. Why do you listen over and over again, tell people what that does. Because

Robin 27:41
you miss things like I would. I would listen while I was at work. So you know, I could get a phone call or something when I get interrupted and maybe I missed something. So listening to them over. I hear things that I didn't hear the first time. And like the fat and protein one I've listened to probably four or five times. Yeah, Arden's Arden's I've listened to a lot over it's just hilarious. The second one was hilarious.

Scott Benner 28:12
Yeah, we were. We were tired that night. It was late and we were very punchy. Oh my god. Yeah. Like there's no way to stop yourself from just saying any stupid thing. You're thinking I'll do. I I'm trying so hard to get her to record again. While she's home. She's not feeling well right now because her TSH jumped up. And oh, and she went, she got home and she's like, you know, I've been home for like a week now or so she's like, I'm achy. My joints are hurting again. She's like, this still isn't happening at school. Like, you know, and you're like, your brain goes crazy trying to figure it all out. But oh my god, well, let's get you to the doctor and get a blood draw. Their TSH came back like way high. And the doctors the doctor, she's actually going to talk to her today on the phone. But the doctor is like, I don't think this is going to stay this way. I think this is inflammation making your TSH higher. And I think that's really something because it sounds so I don't know it sounds Hocus Pocus, he it's hard to talk about inflammation. But if you have autoimmune issues, some people are experiencing like constant or intermittent inflammation problems. And so the doctor is like, Look, if we go back, she's like, it doesn't make sense for your weight and all that other stuff that your that your medications should be that much more aggressive. She's like, we maybe can like turn them up for a little while but we're gonna have to be really careful. We're gonna make you hyper really quickly. And so like they're getting they're working that out right now. But Arden said the other night she said I couldn't go to sleep till like five in the morning because of how bad my legs hurt. Oh, yeah. And she's like, it's it's definitely because of my thyroid. So they told me

Robin 29:49
many, many years ago before it was a thing that I had something called fibromyalgia. While it was shortly after that, that I was diagnosed with The Hypothyroidism Yeah.

Scott Benner 30:02
So not fiber, my fibromyalgia which I think especially back then men, like we don't know what's wrong with you

Robin 30:11
is all these symptoms and so they just Yeah,

Scott Benner 30:13
yeah so she's gonna get on the phone today and they're gonna come up with a plan to kind of try to get it back again. And then stay ahead of it and but it sucks because it really is. It's,

Robin 30:24
she's on break, she needs to enjoy her her break. Yeah, yeah,

Scott Benner 30:27
no kidding. Anyway, where was I going with all that? Okay, so you found the Facebook group. And then you know it's funny, that sentence that you spoke a little while ago used to fry my brain. Like I couldn't understand when people were in the Facebook group and they're like, I don't understand what podcasts you're talking about. But then it occurred to me eventually, that the Facebook group had such a good, I don't know, like vibe about it like a buzz that people would say, use that Facebook group, because you'll do better with your diabetes if you go in there and check it out. And that people would end up there without ever hearing about the podcast, like the first time that happened to me. I just had a very concrete idea like, oh, I made a Facebook group to support the podcast. So obviously everyone knows what the podcast is. But it took me right. It didn't take long for that not to be the truth. So and vice versa. I think there are people listening to this right now. They're like Facebook group, what are you talking about? So be Yeah, it's interesting how it

Robin 31:27
works. Yeah, I'm not in there. As much as I used to be, like, if I'm scrolling the newsfeed, meaning I see a post, I'll read it, and sometimes I'll comment. But at first, it was extremely helpful, but,

Scott Benner 31:41
ya know, it's not a thing that you're gonna stay in forever. If it's going. If you're figuring things out, like eventually you're just gonna say, Okay, I know these things, then you make that decision. Like, am I a person who stops in once in a while and says Hi, and tells people hey, I have an answer for this. I see. Nobody else is answering it. Or you go back to your life. You know, it's

Robin 31:59
Yeah, I did post in there that maybe a couple of weeks ago, I must have had a low under night and I woke up and I had a dark Skittles next to me in bed and there was stuck in my hair and

Scott Benner 32:12
Skittles stuck in your hair when you woke up? Yeah,

Robin 32:15
because I freeze dry Skittles. And so they're hard so they're easy to eat. Oh, yeah, they're crunchy when you're braised around. So I have a jar of him on my nightstand. Yeah,

Scott Benner 32:30
Robin, where did you come up with that? From? Where did you get that idea? What to freeze dried them.

Robin 32:36
I have a freeze dryer. You're

Scott Benner 32:38
just like let's see what happens when I put a Skittle in here. Oh, no, no, no, that's

Robin 32:41
it's a thing. People sell freeze dried candy for big bucks. Oh, this

Scott Benner 32:46
is like I don't know about Yeah,

Robin 32:48
it's a thing. Look it up. You got the Google right there. I gotta right here. Yeah, freeze dried Skittles. They kind of blow out. The Yeah, you'll see when you're when you're

Scott Benner 33:00
robbing Yeah, you're a sugar connoisseur.

Robin 33:03
Boy, trying to gain 20 pounds.

Scott Benner 33:08
Try something else. Have you tried to choose? Are you a vegetarian or anything?

Robin 33:14
Oh, god. No, no, I'm a no I'm a carnivore.

Scott Benner 33:20
Robin trying to name her episode. Good job.

Right down here, Robin such a 3544 I got it. Don't worry. Oh, that's hilarious. So I just need to I don't know why I need to tell you this. But when Kelly and I were first dating, so we're really young. We had gummy lifesavers, one day, and we were in bed, you know when you're young. And like we were like it was the end of the night and I put a gummy Lifesaver around her toe like a ring. And then then we forgot about it. And we woke up the next morning. It was like it was horrifying. How that little gummy Lifesaver got warm with like, you know, her body temperature and then just smeared on everything it was it was

Robin 34:16
probably a red one to look like a grind. It was

Scott Benner 34:18
just everywhere. Like this sheets were sticking to her and to me. Like I'm just like it was this one little gummy lifesaver. Like how could that be? Oh my god. Gummy candy. So good. Anyway. What made you want to come on the podcast?

Robin 34:34
I didn't you invited me.

Scott Benner 34:37
You didn't want to come? Why did you say Yeah,

Robin 34:39
well, I don't I don't mind. I mean, I don't. Yeah, I mean, I didn't ask you though, you you. I posted something in on a Facebook group and you invited me You said I'd like to like to have you on and I said why? And he said because I like you and I said what do you think John? And he said go for it. I said

Scott Benner 34:59
okay, cool. Now you're very, you're very interesting. And by the way, so far, almost exactly how I pictured you, but not quite. So I didn't know you were like, I didn't know the part of the country you lived in in my head. You were like a California person. Oh, I don't know why

Robin 35:16
I never even been to California.

Scott Benner 35:18
There's still time.

Robin 35:21
It's retire. I'm retiring on September 29. So yeah.

Scott Benner 35:25
Are you really good for you?

Robin 35:26
I am. Oh, I'd say I was gonna retire two years ago. And now it's my turn. What are you going to do? As little as possible?

Scott Benner 35:36
I've got big plans. Scott. I'm sitting here.

Robin 35:38
I've got a garden that I'm looking at. That's about almost an acre. So really integrating in a greenhouse? Yeah.

Scott Benner 35:45
I don't understand. How do you have so much space in Michigan?

Robin 35:48
I have 37 acres. My gosh, what

Scott Benner 35:51
have you what so Wait, what did you do for your life? Like, how do you acquire 37 acres? Well,

Robin 35:56
this, this was acquired my my husband is the middle of five. And this was the family farm, his grandpa on this farm, and then his dad and mom got it eventually. And then he built this house. And his dad passed away. Probably tonight. No, no, no. We've been here. Oh, my gosh. We've been here for years already. So his dad passed away. And then his stepmom decided to move to Florida. She has recently passed though. And once stepmom moved out, it went to we came to us.

Scott Benner 36:39
Wow, that was interesting to listen to you in real time. Think about the time and distance of your life.

Robin 36:49
COVID COVID has me so screwed up. I gotta add those two years in there. Just got me

Scott Benner 36:54
feels exist. Yeah, it really does. Doesn't it? Like it just it feels like it we were on pause or something like that. Wow. So you say you have a farm. But your your retirement goal is just putter around. Take care of your acre, like that kind of stuff. Yep. Yeah. Sounds relaxing.

Robin 37:14
Sure, well, maybe travel a little bit.

Scott Benner 37:19
Do you have any places you'd like to see?

Robin 37:21
Our son lives in. My, my husband has two boys and I have one from previous marriages. And then we got married. So we are three. But his youngest. The middle son lives in the Upper Peninsula of Michigan in Iron Mountain. So that's about an eight hour drive. So we like to go up there and our other son lives down by Lansing the oldest and then our youngest my my son lives right next to our property connects. He's got I think five acres next to us.

Scott Benner 38:01
You have a bunch of grandchildren. I have four

Robin 38:04
grandchildren that live next door and they have a trail through the through the woods right from their house to towers. They get on, they get on the quads, and here they come.

Scott Benner 38:12
She's that sounds so nice.

Robin 38:14
It's it's wonderful.

Scott Benner 38:16
I have all the things that almost made me cry on this podcast. I didn't expect to hear that your grandchildren had a trail through the woods to your house to like put it brought a tear to my eye for some reason. I'm oh my gosh, grandmother's house we go yeah, that's amazing. That really is. That's wonderful. So you're gonna just you're that's it like you, you have like a classic like I'm gonna retire. I'm going to do the things I like and relax. Yep. Good for you. What do you do your whole life?

Robin 38:44
Well, over the last 17 years, I've sold property and casualty insurance homeowners auto, commercial, not life, no life insurance. But that's what I've done for the last 17 years.

Scott Benner 38:56
Did you work in an office or own the office? No, I

Robin 39:01
didn't own it. But I I've always worked in an office.

Scott Benner 39:04
Is that a sales job to you? Well, everything's a sales job really robbing but you know?

Robin 39:12
Yeah, yeah. I mean, I not really I did more of the customer service part of it. But I am licensed to sell insurance. So I I've sold a few 100 policies over my ears, but I'm not really this. The agent, the

Scott Benner 39:29
salesman? Yeah, you're doing back end stuff. Yep. Yep.

Robin 39:32
He sells them and I've I finished them off.

Scott Benner 39:36
It's amazing. What what do you can i This is a I don't mean this to be like a creepy question. Because you're, you're only 61. But when you own that much property, is it hard to know what to do with it when you pass away? like, Wait, how do you decide where it goes? Because you don't want to give it to five people 10 people and have them split it up and sell it like you want it to stay in the family somehow I would imagine but then how do you make that decision? Actually,

Robin 40:00
we just did this. We just got everything all finalized. The the oldest wants to live like in South Carolina, he doesn't want it. The middle son says He'll never leave the Upper Peninsula. He doesn't want it. The youngest has the property that connects to it. And he would give anything to have it. So it goes to the youngest. And then the older two will get whatever money's left.

Scott Benner 40:27
Oh, no kidding. Oh, so he'll have to buy them out. No, no, no,

Robin 40:31
you have it, they get them. They get them. They get the money and the baby gets the bar. Look at you.

Scott Benner 40:36
It's a thing you have to do. Right? Like there's no way you can't get that straight ahead of time. We always like once Arden had diabetes. Kelly and I were like, look, you know, we have to save as much money as we can. Like, we just felt like we needed to leave something to art. And like, what if Arden ends up being like anirudha? Well, right. And I don't want to I don't want to think that she doesn't have access to insulin or supplies or stuff like that. Right? Yeah. So we're pretty hard workers. And we're trying to save money as best we can. But the minute you start making that decision, you think, Well, I can't just like, like, however much money I can amass over my lifetime. I can't just give it to her. It Right. That's about coal. Because coal, coal will feel like wow, they gave everything to her. Like we couldn't do that tonight. Then there's more pressure. Oh, you have to make more money it gets. It's like I know. Yeah, it's horrible.

Robin 41:28
I get it. That's why I just I just Well, actually, my cozy Earth order is being delivered today. Do you remember? Do you remember getting on my case?

Scott Benner 41:36
The nuclear you broke my balls about cozy earth so many times, and then you bought something? Thank you.

Robin 41:43
I had to, I told my husband. I can't record the podcast, I have ordered something from cozier.

Scott Benner 41:50
That's so funny. Hold on. I'll get back to that for a second. So we told the kids like we're like, look, I don't know how much we can save. But whatever we can save. Like, I have to be honest, if Arden didn't have diabetes, we'd be like good luck, soccer's. But you know, and maybe, like retire early or something like that. I'm like, but because of the situation. And Cole has Hashimotos now. So like, okay, like, maybe this is going to, like keep going in their lives. I'm like, we're going to save as much as we can. And when we go, we're going to split it between the two of you and please don't piss it away, or let some harlot take it from you or whatever, you know, because the worst thing I can imagine Robin is like braking is my whole life. And some guy or girl like takes it off my kid one day, like it really is an upsetting thought, you know? Yeah. Anyway, okay, so. So I branch, I branch out who is it first, athletic greens is first they come to me. And they're, they say like, look, you know, we'd like to buy ads on the podcast. And I was like, wow, like, I really, that really meant. I know, it sounds crazy. That was a big deal to me. Because it's not a medical company looking to buy an ad like, you know, Dexcom wanting to buy an ad on this podcast makes, you know, makes a ton of sense, right?

Robin 43:06
I'm gonna crunch I gotta eat a smarty sorry,

Scott Benner 43:09
your business. Hey, and then I'll ask you about your blood sugar in a second. When Athletic Greens comes by. I'm like, Oh, I'm a real podcast. Like, it's not just like just the diabetes podcast. This is a real podcast. And it's the kind of podcast that people listen to at work. And, you know, one day, like, their employers will be mad because podcasts exist, and everybody's listening to podcasts and not working. But, but I was like, Oh, wow. And then we did a test, you know, they're like, let's do a few months. So a few months go by and they call back and like, we want to do more. And I'm like, really? And they're like, Yeah, we're getting a really nice response from you. And I'm like, Oh, fantastic. Like, this is terrific. And then one day, I get this email. And this girl is like, hey, we think we want to try to buy podcast ads from you. Or cozy Earth and I was like, What the hell like Okay, so I'm like looking into it and everything and I was like, Well, you know, send me something so I can try it. I think they sent me like sweatpants or sheets, maybe first I'm not sure what it was. And I was like, I slept on those sheets for a little while. I was like, Oh, I get behind this. I want more of these sheets. I can see people would want these. They're not inexpensive. And so you know, so it's so it's like look, we'll give your listeners 35% off actually, Robin, you're the first person to know this. Very soon my offer code will be 40% off.

Robin 44:31
You might have gotten I still got a good deal though. Because I got an on the Fourth of July sale. It would have originally I got this written down here. It would have originally been $257.31. And I got it for 129 19 and free shipping.

Scott Benner 44:45
Fourth of July plus my 35%. Yes, lovely. Yeah, good for you. I should have bought more sheets that day. Because by the way, they said every time they re up the contract. They're like we'd like to send you a gift and I'm like sent me a sweatshirt or like artists like has pajama pants or something like that. Well, but I have a problem with my money since then.

Robin 45:04
Oh, gotcha. But oh, so nice. Yeah, I'll let you know. Because I love. I mean, there were all kinds of clothes on there that I just loved but too big. There's they're extra small was still too big for me. Because I can't mean any damn way. But I did find a pair of joggers I had a drawstring.

Scott Benner 45:28
I'm telling you, I dream about putting those joggers on Sunday. But, but the funny thing is, is like you you like you. I don't know, I put links up online, like to understand the process of the podcast, like so that you can learn how to take care of your diabetes, which, you know, you said the podcast was really helpful with, I need to be able to make a real podcast like I can't put up an episode once a week, like that's a vanity project. It's a hobby, right? Like it does that won't get enough downloads to keep it viable to spread it around everything. So you need to do what I do. You need to make content and put out a real podcast. And and that takes an immense amount of time. Like I can't even begin to tell you that about 70 hours a week is spent with my sitting in this chair doing something for this podcast. That's more than I work. Yeah. And so like it needs to be like I have to be compensated for it, or my wife is going to be like, you know, how are we going to save the money for the kids and like, you know, not for us, apparently, but for them. And, and so the advertising is really important. So once in a while I go on the Facebook group and I'm like, hey, don't forget Dexcom don't forget this, like, you know, like, remind people Hey, check this out. And then I'm like, Hey, cozy Earth to new sponsor, you get 35% off. And right away Robins like this stuff's expensive. And I'm like, like, Robin, I want

Robin 46:48
you to, like it's a little pricey. It's a little whips me in the group.

Scott Benner 46:56
I'm like, Robert, what do you do? Let them get over, let them get over there and decide if they think it's too expensive or not. I'm gonna I'm gonna walk into that insurance agency tomorrow. And I'm gonna be like, Hey, you guys don't need insurance?

Robin 47:11
No, you explained it in one of your podcasts to somebody and I was like, Man, that makes sense. I get it. Get it? Okay, let me go shop. And

Scott Benner 47:20
I've also been sensitive to it. Because there used to be a person in the Facebook group who I counted as, like a real fan of the podcast and like, me, and like the whole thing. And one day, they just turned on me, like, and they wrote, and they were like, this is all about money to you. And I'm like, I'm like, I don't know how you can say that. Like, you know, I mean, I make a living, and but I pay my taxes. And when it's all over, I'm not sitting on a mountain of gold. You know, like, it's, it's, it's a fair exchange. I mean, honestly, I don't know that I'm being compensated well enough, if I'm being perfectly honest with you. And for time that gets put into it and care. And, you know, for making a podcast, by the way that feels like it's made by like, the like off the cuff. But it is, is thoughtfully set up in a way that helps you take better care of your health. And, you know, like, it's not easy, by the way. And then, and I was like, I got on, I'm like, I don't I'm sorry, I don't know what you're talking about. And she's like, you're pushing this link for an advertiser. I'm like, I'm pushing the links for all the advertisers because if I don't, I think I'll get a different job. And then the podcast stops. And then the emails that come from people that say things like, we're screwed, yeah, my eat my agency went from 11 to 5.9, or blah, blah, blah. And here's a picture of my kid at the their birthday party eating, you know, ice cream, and they're okay. And like, like, all that stops, because I'm the only one putting this kind of effort into putting this content out. And so, like, at home, I really am like, I swear to you, like I am not over here. Getting wealthy. Like I'm not like, you know, and if I wasn't

Robin 48:56
you don't have to explain yourself to anybody. Jeez. Yeah,

Scott Benner 48:59
Robin, that's the other thing because like, on the other side of it, I'm like, if I was like, if the podcast was making, I don't know, if I was like, sitting on $3 million a year like I hear some people's podcasts like do crazy crazy money, right? Do I need to feel bad about that if that was happening? Like I don't I don't think so either. Right. So but it's not you know, point of fact. And, and anyway, like I couldn't, it was just weird to see it felt like I was being bid by my family pet. Because I had such a warm feelings for this person. And now suddenly she's on my wrist and shaking my arm and I'm like, What the? I was like, I don't know where that come and then also it's Facebook Robin, so I don't know if something is like drunk o'clock. Sometimes. You know what I mean? And

Robin 49:45
oh, yeah, I've done drunk o'clock on Facebook before.

Scott Benner 49:50
We have these like conversations like, like between, like the moderators and I and I'm like, I think this is just a drunk person. Let's just like not worry What else to do? Anyway, I appreciate that she's still in the group. Now she left. Oh, I didn't kick her. I don't kick people out like that you got to be real quick to get kicked out of my group. But, ya know, she just left. And I felt terrible. And I was like, I tried to explain it to her and didn't seem like she cared. And I was like, Alright, whatever. Like it just, there's nothing I can do about that, I guess.

Robin 50:26
Anyway, what another 40,000 sitting there, so,

Scott Benner 50:29
yeah, we're okay. It just feels weird that there was a person who was being helped being helped by it and then just walked away from it was like, okay. Good luck. Like, I'm not I don't feel bad about it for them or me, but it's just strange. Anyway, cuz the earth.com use the offer code juice box at checkout to save 40% Robin off your entire order.

Robin 50:50
Why don't you save 35%

Scott Benner 50:53
I'll send you a check for the six bucks that I got.

Robin 50:58
For the July discount, whatever that was at that time. Anyways, I got a good deal. And I'm not worried about 5%.

Scott Benner 51:04
Good for you. And what a great cozier that I didn't mean for that to be this, but they actually, you know, went full disclosure. Last week, they came back to me and they said, Hey, we want to do two ads a month for the rest of the year. And I was like, well, that's terrific. And, and that money. I mean, listen, after I pay taxes on it, it turns into about half that money. But right, yeah, it will help me pay for Arden's next semester of college. Like, wow, that's awesome. It's really cool. You know what I mean? And, yeah, it's a nice feeling. Because I'm sure like most people, when your kids go off to college, you don't know, like, how am I paying for this? You know, and a lot of people end up with loans. And because of this podcast, like in partly due to this podcast, like my children will go through life without student loans. Like it's a really big deal. Yeah, it's a really big deal for me. So

Robin 52:06
I do all this when join the army right after 911. And get their college paid for free when they got

Scott Benner 52:13
out. So wow, that was lovely for them to do that. Yeah. How was that experience? I

Robin 52:19
wasn't so thrilled.

Scott Benner 52:20
I was gonna say, What did that feel like them leaving like that?

Robin 52:23
Oh, that was awful. Because sometimes you didn't hear from them for 468 weeks at a time, you didn't know if they were dead or alive. Yeah, that sucks. Jesus, that's they were in Iraq and Afghanistan at the same time. In fact, one Thanksgiving, they got to be together. The middle son was headed towards where the oldest son was. And he told the commander or whoever, and they were able to stop and have dinner together.

Scott Benner 52:51
That's lovely. All right. I want to finish up with your diabetes. So okay, I want to know a little bit about your day, how you eat and how you manage. He just walked me through it to get up in the morning. What do you do for breakfast.

Robin 53:05
So if I have to go to the office, I've been I'm working now working home from home three days a week. And I only have to go to the office two days, but it would be every morning, I'd stop at McDonald's or Burger and I get a breakfast sandwich. And then when I get to the office, I Pre-Bolus for it. And then I warm it up if need be, had been at about a level that you that are usually about 830 quarter to nine. Then about 10 3011 o'clock, I'll have like peanut butter cheese crackers or granola bar or one of those huge green bars. And then at lunchtime just about every day, I have a pork barbecue sandwich and potato chips. And then about three o'clock I have a piece of fruit, like cherries or a banana or something like that. Yeah. And then then when I get home about seven weeks dinner and then before I go to bed, I eat a big ol boy ice cream.

Scott Benner 54:05
Do you do the ice cream at the end of the night to try to put weight on?

Robin 54:09
No, it's just a habit. I started like 40 years ago. Wow.

Scott Benner 54:14
Do you really eat ice cream every night? Yes. Wow. No kidding.

Robin 54:20
I did find some carbs smart ice cream. There's only 11 grams of carbs in it. And it doesn't spike your blood sugar as bad as like real ice cream. So if anybody is interested, like for Breyers carbs, smart ice cream and I found some like lunch cycles too. I have some of those in there. So like right now I can just go grab a bunch of cocoa and I have two Bolus for it.

Scott Benner 54:42
Robin I see you is just using a piece of that farm to make your own ice cream.

Robin 54:47
I would love a milk cow but a lot of work. Yeah, a lot. We have a barn we have a barn a big red barn with stanchions and I could get a milk cow and be all set up.

Scott Benner 54:57
That's a lot of cow poop too, though. If you haven't, it's good for the garden. Well, alright, well, I think we're talking about two chickens. Robin.

Robin 55:05
We just called our chickens there in the freezer now, but we raised 20 Cornish cross chickens. And in eight weeks, they got to about eight pounds. Their meat birds. The egg layers are next door at my son's house and he's got about 43.

Scott Benner 55:26
So yeah, we have chickens. Does your son sell the eggs? Yes, we sell

Robin 55:31
the eggs and also I freeze dry them. So in the wintertime, I have fresh eggs

Scott Benner 55:37
where you can freeze dry and egg. Yep, you just did. I don't know about freeze dried.

Robin 55:45
I don't know, the machines. The machines are really expensive. Like mine. I have a medium size. They go from small, medium, large and extra large. I have a medium that was about $4,000. So they're not cheap. But my eggs that are in the all freeze dried will be good in 30 years, my kids will be used I don't

Scott Benner 56:07
I don't understand what happens when you freeze dry something.

Robin 56:10
The machine sublimates the water out of the food and then dries it after the waters the moisture sublimate it out, it dries it and then you package it in mylar and you put oxygen absorbers in the bags. And then you seal them. And yeah, I mean IV you know,

Scott Benner 56:31
Robin, is this a prepper thing? Are you getting ready for Armageddon? Or no?

Robin 56:36
I'm not it's not a I'm not a prepper but it's preparing it's buying at today's prices.

Scott Benner 56:41
Eating it tomorrow when I get you. Yeah,

Robin 56:45
yeah. I did like eight pounds of cremini mushrooms. Those are awesome when you rehydrate them make homemade mushroom soup or gravy.

Scott Benner 56:57
How long does stuff stay good for when you freeze dry it

Robin 56:59
25 to 30 years no kidding.

Scott Benner 57:04
Wow. I don't i By the way, this episode is going to be called freeze dried Skittles. There's no way it's not going to be it was so close to carnivore a second ago but definitely that's insane. Like i How long does it take to freeze dry something?

Robin 57:23
It depends on what it is how much moisture it is yesterday I took out cherries, strawberries and lemon slices. I put the lemon slices in my margaritas by the way. And strawberries. And that that load took probably about 28 hours.

Scott Benner 57:45
What happens to the liquid that they takes out of the food is it. There's like a drip tray.

Robin 57:49
There's a stainless steel drum around the rack. So you slide your trays in the rack. And then this steel drum is around it and when the water sublimates it sticks to that steel drum in its it forms ice on it.

Scott Benner 58:05
No kidding. All right. This is a whole thing I don't know anything about. I'm actually really interested. So crazy.

Robin 58:13
It's very, very interesting.

Scott Benner 58:15
I'm looking. It's fun, because what do you love about it? Just

Robin 58:21
nine I have all that food. I mean, and the kids enjoy it too. They like because I asked my little three year old grandson. Do you want some strawberries? He goes are they freeze dried? Because some because when you freeze dry, it makes it crunchy. Yeah. And so if I offer him something, he'll say I'm gonna need a glass of water to go with grandma. So I made some like protein bars, I took vanilla yogurt and mixed it with pureed strawberries. And I did blueberries also just mix it all together and put protein powder in it. Thinking that you know, just try to get myself some more protein trying to gain weight. But, but the They're Real powdery when you bite into them. And so it almost sometimes can make you choke. So you got to have something that we're gonna have water with it. Yeah.

Scott Benner 59:09
Interesting. I do like freeze dried apple chips. I have to admit.

Robin 59:14
Yeah, I've done 500 pounds of apples. Probably. I've only had it since January. Do

Scott Benner 59:21
you share it with neighbors or friends or anything like that? Yep,

Robin 59:24
yep. Friends. I do apples girl. A lot of people but

Scott Benner 59:29
I didn't know this existed. Like, I'm gonna look into it. How long would it take to free Australia? Like a six year old child for example?

Robin 59:36
I don't know. That was actually a that was there's a freeze drying group Facebook group, of course. And I went to right lids and kids and I didn't catch it. And so that became a big thing. And he said I was just picturing putting stuff in my three year old grandson into my freeze dryer. It was a big thing.

Scott Benner 59:59
I wonder if you get Probably couldn't rehydrate them or we would have figured that out by now. Yeah, that's gonna kill you for sure. Yeah, nevermind.

Robin 1:00:06
I think it's different than that cryo thing.

Scott Benner 1:00:10
Let's just put that in there as a safety thing. Don't freeze dry. It's a living thing. It's not gonna work out. Right, meet you freeze dry me. Yep. So again, pre color after it's cooked. Um,

Robin 1:00:22
well, when we, we got our, we had our beef butchered. I got the liver, the heart and the tongue in those I just did raw, and then those, give it to my dog or dog treats. But if, if you're a prepper, you're gonna want it cooked before you freeze dry it. So you can because if all of a sudden there's no electricity, or no LP gas for your grill or whatever, you're not gonna be able to cook anything. Okay? So so it's better if you if you're a prepper you're gonna want to pre cook your your stuff. Now all you have to do is add hot water.

Scott Benner 1:01:00
I say. And then we're right back again. Then you're

Robin 1:01:04
right back again. And it's good and tastes just like well, that was the same just like

Scott Benner 1:01:10
it went in. Yeah, that was my next question. You don't notice that it's been freeze dried?

Robin 1:01:14
Not at all. That's crazy. About some things. Some things you can't rehydrate. like strawberries, they turned to mush. Once Yeah,

Scott Benner 1:01:23
yeah. Like a like a, like a space movie where they try to move something from one place to another and it comes back put together wrong. I wouldn't know. We don't have TV in Michigan. Stop it.

Robin 1:01:36
I have TV, but I don't watch movies.

Scott Benner 1:01:38
Now you What's the last movie you saw? Oh, it's

Robin 1:01:43
probably at the drive in. Yeah, we do have a drive in theater.

Scott Benner 1:01:47
Tootsie or something from the 80s or something like that? No, it

Robin 1:01:51
was I think it was actually. Pocahontas. That

Scott Benner 1:01:55
animated movie from the early 90s. Yep. Yep. So you took a kid to that? Yep. You don't like how about you watch TV? Do you like have a favorite like, TV show? I watched?

Robin 1:02:06
Yeah, like NCIS and bluebloods? I like those kind of movies. You're

Scott Benner 1:02:12
not they're not into something that's on Netflix or something like that, or? No, no, no. Okay. I'm trying to get that movie was 1995.

Robin 1:02:24
Now that was probably the last movie I watched. I mean, I may have watched a Western or something on TV with my husband, but I can't tell you the name of it. Probably some John Wayne

Scott Benner 1:02:32
flick, but close to 30 years. You haven't been like to a movie theater? Correct. Wow. I saw movie last week. I don't even know if it was good.

Robin 1:02:41
I just love the closest movie theaters an hour away. Okay,

Scott Benner 1:02:45
you're pretty far. In the middle of Michigan kind of feeling. I'm

Robin 1:02:51
in bfhi. I live. I live eight miles from Lake Michigan on the West Coast.

Scott Benner 1:02:57
Okay. I'm trying to figure out what BFA means. Oh, I can't say Oh, really? Hold on. I'll find out. Hold on, hold on. I'm looking. Okay.

Robin 1:03:12
I have stands for what you think.

Scott Benner 1:03:16
Fantastic. No, I'm gonna have to ask you and then beep it out. What does it mean?

Robin 1:03:23
I can't believe you never heard of BFP

Scott Benner 1:03:28
I didn't know that. I've heard that phrase. By the way. I didn't. I didn't. I didn't know it is an acronym.

Robin 1:03:34
There was an acronym.

Scott Benner 1:03:37
Ah, that's ridiculous. Alright, so you live in the middle of nowhere.

Robin 1:03:42
Yep, gotcha. gravel road. Nope.

Scott Benner 1:03:45
That's wait. That's why it's wild. Okay. Listen, Robin, I appreciate you coming on when you didn't want to.

Robin 1:03:53
And just not that I didn't want to it's, I didn't. Because I just hadn't thought about it. Yeah,

Scott Benner 1:03:59
no, you just, I just found you to be I find you to be lovely. Online. And I just thought you'd make a great addition to the podcast. Really? Thank you. Yeah, represent.

Robin 1:04:10
I try I have to sometimes remind myself to be nice. But when people are like, my daughter's at 93, and she doesn't have her glucagon, it's like, oh, dear Lord. And

Scott Benner 1:04:22
I try my hardest to think that everybody's at a different part of the path and that they're theirs. Everyone has thought at some point oh, my God, a cookie just saved my life. And, and when you when you're first, you know, when you're first at it, you could feel like your life is being saved when your blood sugar's 95. And, and

Robin 1:04:45
I'm scary. I know. Sometimes. And I can't imagine being being a caregiver for for a toddler. They're just

Scott Benner 1:04:56
it's a lot of pressure. But I can tell you that much. I

Robin 1:04:59
can't even imagine. I cannot imagine. I read some of those possums like, Oh, poor parents. They're the warriors in my book. Yeah,

Scott Benner 1:05:08
no, it's it's hard when they're really little not to just look at them when you put them to bed think like, just don't don't don't die. Like I'm, yeah, there

Robin 1:05:17
was somebody out there the other day that had a nine month old I think like, oh my god,

Scott Benner 1:05:23
yeah. Well what do you see that's a that's an amount of work that will take years to get through like that, like that part of their life is going to take years to get through. And it's going to feel so

Robin 1:05:35
many. Yeah, so many stages, you know, the growing and the puberty and all of it. I just, ya know. Thank goodness, it was me and not one of my, you know, yeah,

Scott Benner 1:05:48
no, it's crazy. And you don't. Did you have any viruses before you were diagnosed?

Robin 1:05:55
Oh, I started to say that. I think that before. I think in February, I actually had COVID. Oh, early on. Yep. Before it was, like a widely known thing. I really think I had COVID.

Scott Benner 1:06:10
Okay, then then that probably got your immune system going in the wrong direction.

Robin 1:06:16
Because I already had, you know, Hashimoto. Yeah,

Scott Benner 1:06:20
yeah. You I mean, you obviously have autoimmune, like, you know, tendencies. So, yeah, that makes sense. I met somebody yesterday. Who's got long COVID. And, oh,

Robin 1:06:30
that's miserable. I've

Scott Benner 1:06:31
heard Yeah, he's he's pretty beaten up. We were talking about it for a little bit. But what's good?

Robin 1:06:40
What's the thing where we do our children and grandkids and they we do their blood and send it up? How come? I can't think of that right now?

Scott Benner 1:06:48
Try on that.

Robin 1:06:49
Thank you. Yes, my kids. My kids just did that.

Scott Benner 1:06:53
Oh, you haven't heard back yet? Oh, no. Did they? Did they come to you about that? Or is that something you asked them to do?

Robin 1:07:00
I asked them to do it. My my, one of my granddaughters is like me, our personalities are different. But she is me through and through and through. And I really wanted her tested. But I didn't want to single her out. Because she's old enough to know that, you know, so. They all did it. My son and his his kids. Oh, I

Scott Benner 1:07:23
said kind of made it feel like we're all doing this. It's not just because of we're worried about you. Right. Yeah. It's interesting. Well, I hope you get good news back, but I think it's a great. I think it's a great thing to do. Yeah, me too. Yeah. Good for you. All right. Robin, I appreciate you doing this very much. If you don't have anything else. I'm good. But if we miss something, please tell me. No.

Robin 1:07:46
I'm looking at my website. I'm good.

Scott Benner 1:07:49
I liked it. You made a list.

Robin 1:07:51
Well, I had to do a timeline because I wasn't gonna remember all that off the cuff.

Scott Benner 1:07:55
You did not strike me as a list person. When you said you had things written down. I was like, Oh, that's interesting. Appreciate you putting in the effort. Would you hold on for me for a moment? Sure. Cool. All right.

A huge thanks to Robin for coming on the show and sharing her story with me. I cannot believe you can freeze dry Skittles. Art and started using a contour meter because of its accuracy. But she continues to use it because it's adorable and trustworthy. If you have diabetes, you want the contour next gen blood glucose meter. There's already so many decisions. Let me take this one off your plate. Contour next one.com/juicebox A huge thanks to a longtime sponsor touched by type one, please check them out on Facebook, Instagram, and at touched by type one.org. If you're looking to support an organization that's supporting people with type one diabetes, check out touched by type one. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community. Check out Juicebox Podcast type one diabetes on Facebook. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#1088 Anonymous Guest

My anonymous female guest has type 1 diabetes.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, welcome to episode 1088 of the Juicebox Podcast

my guest today has had type one diabetes for over 35 years and she wishes to remain anonymous. This is her story

please remember that nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin.

If you're not already subscribed or following in your favorite audio app, please take the time now to do that it really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening

if you'd like to wear the same insulin pump that Arden does, all you have to do is go to Omni pod.com/juice box. That's it. Head over now and get started today. And you'll be wearing the same tubeless insulin pump that Arden has been wearing. Since she was four years old. Arden has been getting her diabetes supplies from us med for three years, you can as well, US med.com/juice box or call 888-721-1514 My thanks to us med for sponsoring this episode. And for being longtime sponsors of the Juicebox Podcast. There are links in the show notes and links at juicebox podcast.com. To us Med and all the sponsors.

Anonymous Female Speaker 2:14
I have had type one diabetes for 35 years, actually a little over 35 years. I was diagnosed on August 24 1987. How do I know the exact date you might wonder I was diagnosed on my birthday?

Scott Benner 2:30
Hey, wow, that's terrific. How old were you that day? I was five. My god, that's terrible. All right, five years old and 87. And you've had diabetes for how long?

Anonymous Female Speaker 2:43
A little over 35 years.

Scott Benner 2:45
Wow. So you're 40 you were diagnosed on your fifth birthday, you said you had fragments of memories. Tell me what you remember.

Anonymous Female Speaker 2:54
Um, I remember being in the hospital. And I remember being scared. And I remember being calmed down by other kids who were racing in the hallway, on wheelchairs. And there happened to be an extra wheelchair. So I was able to join in there racing. I remember sharing a room with a screaming baby. And that being very additionally stressful. I remember my dad crying a lot. And my mom was away lecturing in another country. And so she wasn't there for the first few days. But I remember her coming. So I must have been in the hospital for a few days in order for her to to have a memory of her being there.

Scott Benner 3:44
Yeah. Did you have brothers and sisters at that point? Or do you know? No,

Anonymous Female Speaker 3:48
I'm an only child. Okay. My father is a type one. And my parents did get pregnant before me. And my mom had a miscarriage and it somehow I don't really know how being that it was my father's side. But it was somehow related to my father being a type one that the miscarriage I guess it just got blamed on him being like one that's interesting. My parents tried to adopt. I don't know what year this was. I just know it was years before I was born. Because my mother was a full time working woman who traveled a lot and because my father is a type one, they were denied adoption. And I was their miracle baby, I guess.

Scott Benner 4:39
Still are in 8787 you get denied and adoption for the husband being type one. That's interesting.

Anonymous Female Speaker 4:47
I was born in 82. So this was probably in the 70s. I see.

Scott Benner 4:52
Okay. You think Have you ever spoken to your father about him being upset that day? Oh, yeah.

Anonymous Female Speaker 5:00
My dad is actually a large part of my story, I guess. My father was diagnosed in 1969. He probably had type one for many years without knowing it. He grew up very poor in New York City, and he didn't get diagnosed until he got drafted. For Vietnam. He, apparently a lot of draft dodgers were adding sugar to their urine. So he had to get tested multiple times in front of a panel, making sure that he wasn't doing that. Oh, and that's how he got diagnosed. They're like, okay, so this is legit. And we're sorry to inform you. Yeah,

Scott Benner 5:44
yeah. At least you don't have to go to Vietnam. But you got diabetes. What do you mean, you think you had it for a while? Do you think he was Lada?

Anonymous Female Speaker 5:51
I don't know. Yeah.

Scott Benner 5:53
I mean, you can't have it too long. They'll kill you if you don't diagnose it. So like, he's got to have some help from his pancreas along the way. But was there stories that would indicate that he looked back and saw saw bits and pieces of it at times? Or no,

Anonymous Female Speaker 6:07
I think a lot of it was a blur for him. He remembers being very thirsty. And his favorite thing or drink was Coca Cola. So clearly, that would have made things worse. I imagine. Maybe he had a long honeymoon phase. That's crazy.

Scott Benner 6:25
And are you and he's similar in personality.

Anonymous Female Speaker 6:29
My father passed away in 2015. We do have had a lot in common. When I was I think I became an independent diabetic at a very young age because of him, which I think is both a good and a bad thing. As I grew up, I think that a lot of things that were normal for him were outdated for me. And perhaps my care would have been a lot better if I wasn't given like information that he was given, like, you know, you want to keep your blood sugar's under 220, if you can, was kind of like the norm throughout my life with him.

Scott Benner 7:18
How old was he when he passed? Early 60s was a complications from type one.

Anonymous Female Speaker 7:24
Yes, he started having very, very severe hypoglycemic episodes, he became severely hypo unaware, he would have seizures in the middle of the night, quite frequently. And we discovered that some of those features involve many strokes. So he developed dementia. And the last, I want to say five years of his life is spent in assisted living. I'm sorry.

Scott Benner 7:54
Yeah, that's terrible. How long did it take you to figure out that you shouldn't be managing your diabetes, like it was 1969. diabetes,

Anonymous Female Speaker 8:02
summer camp, probably was when those ideas were first introduced to me. My parents actually sent me to a diabetes summer camp, I believe, is in New Jersey, shortly after my diagnosis, but I don't remember much of it. I remember hating it, I think that I was too young for it. And we didn't try again until I was a teenager. And then it was, whoa, this is the best thing ever, you know, like, meeting other people like me?

Scott Benner 8:33
How old do you think you were when you went back the second time?

Anonymous Female Speaker 8:37
I want to say 13. Okay.

Scott Benner 8:40
And that was good for you to see other people.

Anonymous Female Speaker 8:43
Yeah, absolutely.

Scott Benner 8:46
What happens? Do you see people using technology that you don't have or dealing with things differently? And then it kind of dawns on you that there might be more than one way to do this?

Anonymous Female Speaker 8:58
I think normalizing it in general, like, I've always felt this sense of rejection and shame. And I like I always for as long as I can remember, tried to hide the fact that I was a type one. And being in an environment where basically everybody is doing the same things that you are, you know, I felt more out about it. If that makes sense.

Scott Benner 9:23
Yeah, it does. Hey, the shame makes sense, but rejection how

Anonymous Female Speaker 9:29
it's hard to describe. I always had my my diabetes. Like for as long as I can remember, I didn't, I couldn't test my blood sugar privately. I just wouldn't do it at all. This feeling of judgment, like my machine was done with me. You know, when I was first diagnosed, we didn't have glucometers actually, I mean, sure. That came about eventually, but you don't ketone strips. Yeah, that's

Scott Benner 9:59
how I used to tell strip logic, my opinion on something right?

Anonymous Female Speaker 10:03
Well, ketone strips like to test ketones, but we actually had something similar, but it was blood glucose strips that you would like match the color from the blood strip to the side of the bottle. Okay. And my dad and I, we thought we were so creative, or he did, would cut the strips in half. So we could save money and both use the same strip, and use less blood because these test strips required a drop of blood, like the size of a pencil eraser, you know, okay. And then we got our first glucometer, which actually use the same strips, I want to say it was an Accu check. And it was the same method, except instead of comparing the color to the side of the bottle, you put the strip in the machine, so we couldn't cut them anymore. Anyway, that was kind of a side story. I think once seeing actual numbers, was when I started to develop that feeling of rejection and judgment.

Scott Benner 11:00
I see. You know, you're not the first person to tell me they cut the strips in half. Oh, yeah, it's not. I know, you're probably like, This is crazy. But I'm like, No, I've heard that before. Okay. So when you see a number, and it feels like a grade, I'm guessing, and then you feel like you're failing?

Anonymous Female Speaker 11:21
Yeah. And then my parents started a star chart. I wasn't very good at getting stars. So I don't, I don't think that was very beneficial.

Scott Benner 11:33
Yeah, you got to make some of the stars easy to get, if you're gonna do that, as a parent, I said, there's a prototype for you make sure they get some don't just set up and go one day. Do you think that your personality leans in this direction? If you don't have diabetes are away from it.

Anonymous Female Speaker 11:50
I think one thing that I really struggle with is determining whether or not diabetes is the cause of it. I say, if, if this is just kind of like a natural behavior for me, and were like, you know, like, just put my mind does, or if diabetes somehow, like, triggered it. And I can't place like a defining moment. But I do also have ADD, and hypothyroid. And I've just recently learned about women with ADB, suffering from rejection sensitivity disorder. This is a very new term for me, I heard about it for the first time in an add support group online about a year ago. Just reading up on it, it's just like, it kind of sparked a lot of memories, which is part of the reason why I wrote to you about being on the podcast, was that this was a whole new thing for me like, oh, well, maybe this memory had something to do with RSD. And and how I reacted to that situation, you know,

Scott Benner 12:55
yeah, it's a break. I want to break this into chunks. Because I thought what you said a minute ago was really interesting. The idea that you don't, I'm changing your words, but you you aren't sure if you're the person you were meant to be? Or if you're this person, because you have diabetes, is that right? Yeah, you could put it that way. Yeah. And so would I be having these reactions or feelings if I didn't have type one? Oh, yeah. Is your is your thyroid well maintained?

Anonymous Female Speaker 13:28
Yeah, actually, that's been something that has been very level ever since I started Synthroid, as a child. My father took Synthroid

Scott Benner 13:35
as well. Yeah. What's your TSH?

Anonymous Female Speaker 13:39
I don't know that number off the top of my head, find out

Scott Benner 13:42
because I think at two or under is most beneficial. And a lot of doctors will tell you, Oh, it's four. It's terrific. It's in range. So look at that, because there can be anxiety, mood, there's a lot of stuff that can come from a higher TSH and an unbalanced thyroid, too. So that's worth looking at. Do you how's your energy? You have good energy? Are you tired a lot? I used to hate ordering my daughter's diabetes supplies. I never had a good experience. And it was frustrating. But it hasn't been that way for a while actually for about three years now. Because that's how long we've been using us med us med.com/juice box or call 888721151 for us med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omni pod dash. The number one fastest growing tandem distributor nationwide, the number one rated distributor index com customer satisfaction surveys. They have served over 1 million people with diabetes since 1996. And they always provide 90 days worth of supplies. In fast and free shipping, US med carries everything from insulin pumps, and diabetes testing supplies to the latest CGM like the libre three and Dexcom G seven. They accept from Medicare nationwide and over 800 private insurers find out why us med has an A plus rating with the Better Business Bureau at us med.com/juice box or just call them at 888-721-1514 get started right now. And you'll be getting your supplies the same way we do.

Anonymous Female Speaker 15:36
My energy goes up and down throughout the day. I'm not a morning person. But once I'm up at going then I'm pretty good through the day. I remember my energy levels being very poor when I was younger, I think because my blood sugar's were very out of control. I did have a very unusual eating disorder when I when I was young. Again, kind of like going back on well is wasn't RSD like kind of affiliated to my eating disorder because unlike other eating disorders that I've heard about, like diet, bulimia, and things like that, my never really had anything to do with weight or weight loss, or intentional weight loss, I should say. Um,

Scott Benner 16:25
how did it how did it manifest? Just lemons. I'm just kidding. Well, what was it? I,

Anonymous Female Speaker 16:33
I was a binge eater. Specific to sugar. I don't know how it started. But it's goes as far back as I can remember, I think perhaps somewhat triggered by you know, you're not allowed to have sugar. So maybe it was a little bit of a rebellion. Sure. But I don't, I don't remember feeling rebellious. I could eat a whole pizza in one sitting. I would eat like a whole package of hotdogs, getting home from school. If I had the opportunity to go into a store and buy bags and bags of candy. I would just eat them all in one sitting. I remember like one of the worst of it was filling an ice cream cone with pure cane sugar and just looking the sugar out of the ice cream cone.

Scott Benner 17:20
Oh my gosh. That's it. Yeah, dedication. So

Anonymous Female Speaker 17:23
I began I would eat packages of waffles. And I never I wasn't believed it. I never threw up. I never. I never denied myself insulin. I you know, I always took my long acting. I always took my short acting. I never counted my carbs. I never did anything like that. I would just be like, Oh, I just I just ate a ton of sugar. So I'm gonna reg Bolus. You

Scott Benner 17:48
think this eating this eating you think was about proving that you can like Did somebody tell you not to eat these things? At some point? You're like, Yo, I'm going to

Anonymous Female Speaker 17:58
possibly, I don't know. But it was it was binging. It was really bad binging. And it wasn't until I was like a young teenager that I realized what how severe of a problem it was or actually even realized it was a problem at all, you know, because I wasn't overweight from it or anything. I was a subscriber to I think it was teen magazine. And there was an article about binge eating. And this girl was describing how she just couldn't stop eating when she was in. You know, like described her binges. And I just read the whole thing. And I'm like, That's me. I do that. Okay. And I went to school the next day, I was probably about 15 Because it was high school. And I was a freshman. Yeah. And I, I went to the school counselor with the article in hand. And I said, Hey, you know, I think I've got a really big problem here. This is me, like, I read this article, and this is me. And the counselor literally looked me up and down and said, No, it isn't you're not overweight. binge eaters are fat. That just went on from there. I was like, No, I took his answer as reality and like, okay, he's right. I don't have a problem. And I felt embarrassed, ashamed, rejected, for being wronged. And then I was institutionalized for it a year later.

Scott Benner 19:28
I have to tell you that the closest I've come to crying during a recording this week, is you saying that the counselor turned joy. I'm not kidding. I mean, to imagine the luck of a young person having an eating disorder, recognizing it through a magazine article, taking it to a trusted adult, and like, Hey, I figured out something wrong with me. I need help and they're like, shut up. That's not you know, it's really heartbreaking. I mean, genuinely, I'm, I'm so sorry. I've been wrestling with this thought for a few days now about how much how much in the world goes unsolved. Or how many things go off the rails needlessly because people who don't know, are not, don't don't check themselves there, they feel completely comfortable saying the first thing that comes to their head, and not knowing, and, and how that derails people constantly, or derails, you know, entire movements, you know, things that people say that they want to. They think they're being inspiring, or they think that they're, you know, knowledgeable and they're wrong. And then something like this happens. And I don't know, it felt so personal to me that, that that time got wasted for you, and that you got lucky enough to trick into an answer. And then, you know, you were that close to being helped. And, and then would you say a year later, you ended up in an institution over it?

Anonymous Female Speaker 21:05
Yeah. So I was having like, week, eight episodes, I guess, but I didn't recognize them. I was just like, oh, I ate too much. I don't feel good. But again, like I never heard, or, I later found out when I was in the hospital that my my form of purging was elevated blood sugars. But it wasn't intentional. But that that's why I wasn't gaining weight from all that food

Scott Benner 21:33
I was eating. Yeah, sure. And yeah, that's what I was, I was waiting for you to say that. But right, your blood sugar was so high, your body couldn't even hold on to fat. So

Anonymous Female Speaker 21:41
there was, I was seeing a therapist. And I don't even know, where my parents were through all this really, I mean, my mom did travel a lot for work. Maybe I was just, I guess I was just really good at hiding it. And my parents really put a lot of independence on me, you know, so there wasn't a lot of checks and balances there. So I certainly don't put any blame on their parents to keep clear. But I went to a therapist appointment and, and I started throwing up bile in the middle of the appointment. And the therapist was like, Okay, there's something wrong. And I feel like this is a cry for help. And we're taking him to a hospital right now. And it wasn't like an ER, it was like an inpatient like, mental mental institution. And they brought me to the eating disorder unit. And I was there for two days. And apparently, because I had an over eating disorder without purging, which is something that they really had no experience with. It was having a negative effect on the other patients in the unit. So they moved me to the juvenile mental unit, I suppose you'd call it. It was like Girl Interrupted, no joke. Probably the most horrible experience of my life being being there. And my my eating disorder wasn't really addressed. It was more ignored. All of the other kids on the unit, went on field trips to the candy machines and the soda machines, and I was not allowed to go I was the only one left behind. And then I did something that was probably like, to this day, I regret more than anything I've ever done. I gave a girl lancets in exchange for her bringing me back food from the candy machines. Because she was a cutter. Oh,

Scott Benner 23:40
wow. That's some black market trading right there.

Anonymous Female Speaker 23:44
Yeah, that's how bad it was.

Scott Benner 23:47
Did you do you remember having the thought like, I'm gonna let this girl cut herself so I can get food.

Anonymous Female Speaker 23:55
I reported like as at right after she gave me the food. I reported her for having sharps.

Scott Benner 24:03
like, look, I gotta get these m&m somehow. I'm gonna tell I'm gonna say Don't worry. I'll save you right after. My gosh. That's, that's intense. Like really, really? Like that's an intense decision. How old were you then? 16 Wow, that's something else. How long did you end up being there in total?

Anonymous Female Speaker 24:26
It's so erased from my mind that I really not sure. I could say like, three four weeks. And it could have been a week but felt like that. Right? But I think maybe six weeks because I do remember halfway through being allowed to go home for a day. And then coming back. Yeah. It was a really weird experience because like, some of the people in the unit were hard to handle I mean, like, you know, like strapped to beds once in a while, like There was actually one moment. A one night I remember that worked for teenagers. It was co Ed, it kind of felt like summer camp when you're having a good day, if that makes sense. My roommate and I like we snuck out to like, hang out with a couple boys. You know, and we got caught. She got strapped to a bed and rolled away. I don't know what happened to the guys. And I was thrown in a room stripped of my clothes completely naked, like in like locked in this room. With nothing like not even a mattress. It's just a cold floor. And I just like thinking about it right now. I'm like shaking. Like I can't believe that. It's something that happened to me like, I am a normal person, you know? And that is a story that is in my past. Like, how is that possible?

Scott Benner 25:48
Right? I had an eating disorder and you end up in that situation? Geez, oh, what does that add? 97. Cohen, is that in the early 2000s?

Anonymous Female Speaker 26:02
I want to say late 90s. Okay, yeah, it must it must have been like 9796 97.

Scott Benner 26:09
Okay, geez, the hell he is. Sometimes you hear people's stories, you're like I expected more from the world, like, you know, I guess not. But, Jesus? Well, that'll keep you from getting involved with any kind of like system again, I imagine you'll avoid, like the plague. Where your parents in contact with you during those six weeks. In 2015, I needed support to start making this podcast and Omni pod was there. They bought my first ad, in a year when the entire podcast got as many downloads, as it probably got today, on the pod was there to support the show. And they have been every year for nine seasons. I want to thank them very much. And I want to ask you to check them out at Omni pod.com/juicebox.

Anonymous Female Speaker 27:01
I was like family therapy sessions. I don't really remember much. I remember my dad. I mean, like he definitely felt self loathing. I mean, even before any of this happened, you know, this is my fault. This has happened to me, too. This is my fault that you have this condition, you know, oh, I didn't you know, I think at the time, there wasn't really a genetic link. But I mean, both my parents were doctors. So if any, anybody knew it would be my dad, but he was still convinced. He was like, No, this is my fault.

Scott Benner 27:39
It's such a strange thing, isn't it to think that. Because if your dad had blue eyes, and you had blue eyes, he wouldn't be like, well, that's my fault. You know, or my doing? He didn't give you blue eyes. But it is weird how people think about stuff like that. But I understand it. And I mean, it's been obvious since the beginning of your story. He's, he's crying in the hospital, in my mind, he's going over, oh, I have diabetes. I did this. You know, like, that's, I'm assuming his his pathway of thought. Which is, I mean, has to be really difficult to deal with. I would imagine, you know, for from his perspective. And then it's probably hard to see things even more so going wrong for you. Because then you think, oh, again, here we are the thing I gave her. And this is her struggle. Did Yeah. Do you feel a moment where like this sort of drama, like it's gone from your life? Or do you? Does it stick with you constantly? Are you able to move past some of these things? How does how does all that work?

Anonymous Female Speaker 28:46
The whole hospitalization part of my life is kind of like almost not a memory anymore. I really just kind of started thinking about it again, because I thought it was relevant to my story to just speak with you today. Okay. But I mean, it has it has had an effect on me. But I'm almost in denial that it ever happened. Like it just seems so unreal.

Scott Benner 29:14
Something you just don't think about anymore. It just is part of the past. Are you fine I remember

Anonymous Female Speaker 29:17
like how they manage my diabetes to when I was in the hospital just seemed so archaic as well, you know, like I had gone back into time machine again and you know, they would prick my finger with this javelin and wipe it again with alcohol afterwards. And I thought that that was so strange and they wouldn't you know, actually push it for more blood until the alcohol itself was dry and off more often than not, you know, the wound close up. She's just kind of so weird.

Scott Benner 29:55
How did you learn about the rejection sensitive Have you dysphoria, that's just in the last year for you.

Anonymous Female Speaker 30:03
I learned about it in a Facebook support group for women with ADD. Some people were, you know, like, we're saying, Oh, is this, you know, am I being unreasonable with this situation? Or is my RSP acting up again? And, you know, I commented on a couple of those posts, and what is this RSD that everybody keeps talking about? And they, you know, told me what the acronym was for. And I started doing some research on it. And I was like, hmm, that definitely sounds like something that I'm afflicted with, you know, I talked to my PCP about it, and she had never heard of it. So apparently, it doesn't exist. But I think that it is something that's so new that it is still questionable whether or not it is a diagnosable thing, right? It's still up in the air.

Scott Benner 30:51
But if you're having the feeling, I mean, does it match the description? I'm seeing online extreme emotional sensitivity and pain triggered by the perception that a person has been rejected? Or criticized? No. Is that Yeah, so yeah,

Anonymous Female Speaker 31:05
I mean, it can be? What's the word I'm looking for? Like disabling? Yeah. I mean, sometimes, there are things that I will not do because of that fear of what somebody will think of me? Do

Scott Benner 31:19
they have to say it? Or do Can you just infer from them that they're unhappy or dissatisfied, and it'll hit you that?

Anonymous Female Speaker 31:28
Sometimes, it's actually something that hits me hard is when somebody does say it. And that's okay, that was hurtful. But because somebody actually did say it, in my mind, everybody is thinking it. Oh,

Scott Benner 31:42
I see. Okay. And then that I had, like,

Anonymous Female Speaker 31:47
a good friend say to me to ones, you know, if it was her words, if you had more respect for your diabetes, other people would have more respect for you. And it hurt it, it hurts so bad, because I was there. I didn't know what it meant. And I'm pick apart all the possibilities of what it could mean. And I wrote like, a really nice paragraph, because this was through messenger. About, you know, I don't really know what you meant by this. I just want you didn't. Could you please, you know, elaborate a little bit more on what you meant by that. And she said, you know exactly what I mean, I don't need to explain myself to you. This is not a conversation I want to have. Did she start when she started? If not, we're not friends anymore.

Scott Benner 32:44
I was gonna say what stops you from going, Oh, this is whole, and then I'm done with it. To break it down. You sound like you manage your, your disease as well. Like, it's not like you're not being respectful of it like, this is her projecting something she's thinking on to you. But then you're you're, you're absorbing it instead of just going that's not right. Because you didn't think it was right, because you responded to her and said, Hey, I don't I don't think I'm doing that. What are you talking about? And I don't know why. What stops you? I mean, I'm sure you've thought about this and don't have an answer, but like, What stops you from not just disregarding there were

Anonymous Female Speaker 33:20
others? I think that was the most hurtful part of that statement was others would respect you. Because she wasn't just speaking for herself when she added that word.

Scott Benner 33:32
Oh, like there's a cabal of people who don't respect you somewhere. Yeah,

Anonymous Female Speaker 33:36
like we have a lot of mutual friends. And now I'm, you know, I just have this in my head. I everybody is thinking this about me, everybody, whatever it is that she's thinking about me and they're all thinking about me now. Oh,

Scott Benner 33:47
I see. Do you really believe that's true? A

Anonymous Female Speaker 33:52
little bit. She and quite a few of our mutual friends. Were there for me when I started having my severe retinopathy issues. But they never really gave me the opportunity to explain how it happened. And how it happened. Scott was not I mean, I can say that was probably a repercussions from my days over eating. How it actually happened happened was when I started on ducks calm. I started on the G four when it first came out. A friend of mine from diabetes summer camp that I'm friends with on Facebook had gotten it and that she knew quite a bit about my history. And she was telling me about it on Facebook. And she said, Yeah, you really want to look into this Dexcom and it's life changing. Like you can see what your blood sugar is every five minutes. And you know, at this time, I was still struggling to test myself and it wasn't just about seeing the number on the meter and the meter judging me. Just a myriad of reasons that I just wasn't testing And but I was totally open to this idea of having a discreet little box in my in my purse that I could pull out once in a while and be like, Oh, wow, check that up. Yeah. So I'm not making a show of it and, and the information is just mine. And so I got it. And I brought it. Interesting story was I brought the receiver to the hospital, my next CD appointment, and I handed it to her and she's like, I've never seen one of these before. I don't think I have the cords are the software to download information. And I was like, really? Apparently, I was the first one at my hospital to get one because I went out on my own to do it. Yeah. And they're a Medtronic sponsored hospital. Not anymore. They've got tons of patients on Dexcom. Now, yeah, my bad. But knowing those numbers and having the frequency of seeing like what food is doing to me, I started injecting more, I started correcting more. And my agency was dropping so fast. I like I, before I started Dexcom, I was little over a 10 I was down to a 7.5. In less than three months. I was walking down the street one day and just look like looking through a red lava lamp. There's dreams of blood and my vision. And I don't know what's happening. And the general consensus of everything that I went through, and the people that helped me behind my back, if she had taken better care of herself. This is her fault. And the very few people that I've shared with that, you know, I said, actually, this happened to me because I dropped my agency too fast. This happened to me because I got in tighter control and got better, too quickly. Yeah.

Scott Benner 36:57
Nobody told you that, that you should have done it slower. That's really Yeah.

Anonymous Female Speaker 37:02
And I don't know that it was even really known that. Because my endocrinologist was so proud. My CDE was so proud. And then I go see a retinal surgeon. And he and use. I've been seeing so much of this with this new technology.

Scott Benner 37:21
Did they were they able to fix it? I mean, you got some bleeders, obviously, but is that under control? Now? I

Anonymous Female Speaker 37:26
had a vitrectomy in each eye. And it's been stable for six years. Oh, good

Scott Benner 37:33
for you. Yeah, I, it's funny that as you're telling your story, the people who if there are people out there judging you those who would do that, obviously the first of all, they don't have anywhere near all the information. They don't understand the history of it, or you know what it was like to manage in the 60s, which would have informed your father who would have informed you. Sounds like your mom traveled a lot your dad was around. You're young, you alluded to something earlier, you never got back to it. But you said that you were given your kind of autonomy early and it was good and bad. And what I took from that was the good part was you knew how to do the things. But the bad part was you were a little kid in charge of a really difficult disease. And yeah, and you don't how are you really going to see big picture stuff and make decisions and adjustments. There's no way for a kid to do that.

Anonymous Female Speaker 38:29
And those people, my parents wanted to give me that independence. I just went in the wrong direction. Well,

Scott Benner 38:35
I mean, that's, uh, I appreciate you feeling that way. But like, from an outsider's perspective, I don't know, what else would you expect to happen to, you know, for a little kid to be like, I mean, name another thing, you'd put a little kid in charge of? You know what I mean? Would you be in charge of like paying the electric bill? Probably not. You know, like, you have to, I don't know, pressure wash the house every spring? I'm not putting an eight year old in charge of that. But diabetes? Yeah, sure. They could do that. But it's a very, I mean, we talked about it now because we know better. And we see, you know, data, but children with diabetes benefit from their parents involvement into their early to mid 20s. And that's not something that you got, you know, and it's not like, it's like you said, it's not like somebody's fault. It's not like your parents were like, malicious. They just they were doing the 70s thing like she you know, this is her thing, and she'll need to know how to do it. So let's get her out in front of it now and teach her what to do, except there were so much more to do that nobody knew about.

Anonymous Female Speaker 39:39
And I think also that that there was a much higher fear of hypoglycemia than hyperglycemia. Yeah, for my dad for both my dad's generation and a little bit in mind too. Especially when my dad started being like hypo autoware sometimes got violent. Yeah.

Scott Benner 39:59
All right, and I see you're trying to avoid that you're trying to avoid passing out you're trying to avoid having a seizure. And, and maybe that was the right thing to do with the time. It's the carryover. That's always the problem. Like when we leave one generation of care and go into another one, it's the carryover that hurts. Like I get, I get that your dad spheres were, what they were based on the technology and the insulin, but then there's something better available, and you're still playing by the old rules. That's, that's where the, the sense of loss comes from. Like, there's, there's because you exist in a time where you were doing a thing, and there was a better thing. And that, that that's where that terrible feeling comes from, like your dad's fate was of the time he was born no different than if I don't know, people used to have babies. And like, you know, they'd have 10 babies to get three of them to live. Nobody felt bad about that at the time, because that's how it worked. So you're like, oh, it's sad. But this is how it works. And you know, people get diabetes in the 60s, and they don't live very long. And that's sad. But this is how it works. It's, it's when I hear the stories of the carryover people like women who were told, there's a woman on here once, I think she was diagnosed in college, and her doctor told her to quit college, and go home and enjoy her life, because she'd never have a job long enough for it to matter. And a man wouldn't want her. Like that happened. Not that long ago. It's crazy.

Anonymous Female Speaker 41:33
I actually had a doctor say something similar to me. But it was after my my retinopathy and my vision was still very, very bad. I was and I am single, I live alone. And she told me that I should quit my job so I could get on disability. So I wouldn't have to worry about being able to afford like, Dexcom my insulin pump and my insulin. I

Scott Benner 42:01
spoke to a woman yesterday who got divorced to get health care. And, you know, you know what, it led to an actual divorce. Like they were they were a happy family who split up so that they could qualify for health care. And then, you know, they actually split up later. Yeah,

Anonymous Female Speaker 42:20
I actually, I did go on disability. I followed her advice, and I was on disability for two years. Then I found a job that was able to accommodate me and, and I do I do have vision loss. And then it turned out I was making too much money. And now I'm being sued by Social Security for like $15,000. Fine.

Scott Benner 42:42
Yes. You must have had some wacky essay when CS when you were a little huh. With the with the eating disorder, and the DK that you didn't know was happening. You must have been in the 13. It's like up there.

Anonymous Female Speaker 42:56
I wouldn't be surprised. I do think that there was a little bit of enabling when I first went to do some

Scott Benner 43:04
broke up. Hold on a second.

Anonymous Female Speaker 43:07
Sorry, it year. Hey, I'm sorry. You broke up. Comparing a one season I was. I'm sorry.

Scott Benner 43:13
You broke up a little bit of enabling. Can you do that part? Again?

Anonymous Female Speaker 43:17
A little bit of enabling at diabetes summer camp, talking to you know, comparing ANC. See, between 11 and 14 and thinking well, mines finds only in the high 10s. So if they're fine, and they're higher than me, I'm fine.

Scott Benner 43:38
Killing it. Yeah, look at me. beaten them by a whole point. Yeah, you know, it's funny. I've heard old timey diabetes camp stories. And I've heard as many that are like, I found people there. And I learned how to do things. As I've heard stories are like, oh, you know, right. That's where I learned to be diabetic. Because people people told me how to cut their my insulin to lose weight there. And that's where I learned how to do this. I'm like, Oh, geez. So I mean, there's this there's going to be an element of humanity everywhere. And sometimes it's this dumb luck is who you bumped into, like imagine had you gone to a counselor who didn't think oh, you eating disorder has to mean overweight? You you would have been better off in that situation. Yeah, hopefully, you know, but I don't Oh my gosh, really is crazy. Do you think there's a way to? I mean, have you left it all behind you or does it still color your existence today? Everything that happened?

Anonymous Female Speaker 44:38
I think it does color my existence in a different way. I mean, I've never actually let go of engine it for a while it was replaced with alcohol. The calories from the food I used to binge, but with less of an effect on my blood. Sugar. So I did go through. It was It wasn't terrible. It wasn't terrible, but it became a problem. actually kind of a side story to that was when I recognized that I had an alcohol problem. It was when I would get withdrawal symptoms from not drinking. So I went to the hospital and you know, decided I needed a, what do you call it like a medically guided detox, okay. And I went to the ER for it and waited in the waiting room for probably over 12 hours, and I was shaking. When they finally took me in and said, we don't do detox from alcohol here. There's nothing we can do for you. So that, you know, they gave me some fluids and I I overdosed on insulin on purpose to make them take me in. And so I was admitted. And I told my I did the detox there. And I was there for about a week, my endocrinologist came to visit me and my CDE came to visit me and a PCP came to visit me. I told them all what I did, I told them, I said, I took a shot of fast acting insulin to get admitted. And they said, good for you. You need it though. So I feel like again, like this is kind of a reoccurring thing in my life. I recognize I have a problem. I go get help. And I get turned away. Yeah,

Scott Benner 46:34
binging is like, like, I think binging is like good indication of depression or anxiety. And it doesn't it shouldn't matter what you're binging honestly. Like it just yeah, that doesn't that part doesn't make sense that, like, why does it matter? Like what it is? And how come they could take you if you were dying, but not take you because of an alcohol thing? And yeah, cheese?

Anonymous Female Speaker 47:00
And I've been I've been able to manage the binge drinking. Ever since you know, all I needed was that detox? And then I've been fine. Was it?

Scott Benner 47:12
Is it alcoholism? Or is it just wanting to take something in in great quantity?

Anonymous Female Speaker 47:17
A second? Yeah, I believe.

Scott Benner 47:21
It's interesting. Have you spoken to a therapist about that ever?

Anonymous Female Speaker 47:23
I've had a really hard time finding a therapist, and I'm not quite sure if I, if I'm ready to do like an online therapy. But there is very little available. I tried a couple of them. The last one I tried, you know, one was probably two years ago. And she said, Oh, your father passed have type one diabetes, you have type one diabetes, it must be so hard for you to know that you're going to die young, of the same thing your dad died of. And I was like, Okay, I'm not coming back here.

Scott Benner 47:58
For people who don't understand. What backwards part of the country do you live? Oh, my gosh, you know, what's interesting about about mental health and therapy is I was approached by an online therapy company about doing advertisements for them. And I thought, well, that might be helpful for people. Let me kind of just get an idea. I went into my Facebook group, so many people, and then I'm like, would you guys want me to do this? You know, it would come with, like, you'd save 10% when you signed up and stuff like that? And like, you know, would that be something you were interested in? The amount of people who are like, Oh, my God, please do that. That would be terrific. I'm going to do that. Thanks, like, overwhelming response, like, callin an overwhelming response. So I'm like, alright, I'll do this. So I go back to the company, I'll say, Yeah, sure. I'll do it. Like, they set me up with a link. And I put it out there. And two people have signed up. And I think it really has taught me the difference between saying, Yeah, you know, I probably should go to therapy, and actually being able to do it. Like, like, make yourself like, do it, that it's an expanse between those two situations, because I can't tell you how many hundreds of people were like, please do that. As soon as you put this link here, I will be clicking on it. And then everybody, nobody touched it. So it's not an easy thing to get involved in. You know, like, I understand why it's a leap. And then if you make the leap, and you get there and somebody so holy doesn't understand the thing you're talking about, Well, geez, like, you know, what do you suppose to do? Your dad died of it, so you're gonna die of it. Great. Thanks. And then what do you do you find yourself in the position of educating the therapist.

Anonymous Female Speaker 49:43
Yeah, you know, paying for it, paying,

Scott Benner 49:46
paying to catch them up. Great. Let me do a trailer about diabetes for you. You charge me $40 While we're doing terrific, and therapy is not covered by a lot of people's insurance. A lot of out of pocket cost. So you want to you want to have a decent experience when you start? Oh my gosh, all right, well, what's the answer? Like? Like, I mean, you're 40 years old. So you've been through all of this, like, what's your wisdom on it?

Anonymous Female Speaker 50:18
I think that I'm kind of being my own therapist in a way, you know, doing research on, you know, the rejection sensitive dysphoria. And something I read in an article about RSD is like, Sure, there's no treatment for it. But it can be, you can overcome it by defining why it's happening. Like, oh, I don't just, you know, I'm not just having a panic attack out of nowhere, right now. Take a breath and realize why you're having it, what's triggering it? And that's been helpful for me. Just another thing that's

Scott Benner 50:54
maybe giving him

Anonymous Female Speaker 50:56
Yeah, yeah. It's also been a little helpful for me to, you know, since having our Dexcom and Omni pod and having a history of constantly hiding it, and not letting anybody know, being more expressive about it. Like I try to, I try to put my placement now in spots where people will see it and asked me about it. And that's been mentally, life changing for me.

Scott Benner 51:28
Yeah, that's excellent. I'm a proponent of loud and proud on diabetes, like, just, you know, and if you have to start small with just peeking out of your arm, you know, your sleeve or something like that, then right on, but it's just, it's too big of a part of your life, it's too important to your health, to hide, because the hiding lends you to say things like, Well, I'm not going to test right now. Because somebody's going to see, or I'm not going to help myself right now. Because I don't want people to know or, like, that's just dangerous physically. And psychologically. I think you kind of, I understand if you don't want to, for people to know, but I just think long term, it's a, it's a benefit. If you if you're open about it. Also, the openness is never hardly what you think, you know, I mean, like, it sucks that you met people who were like, you know, gave you crap who you thought were friends, but is it not better not to have those people's friends? Like, at least, you know, right, that their heads? Like, you know, I mean, have you met other people who don't care that you have diabetes and don't have big opinions about things they don't understand? Yeah, I mean, it's just, it's a everything's just such a process. You know, that's the part that

Anonymous Female Speaker 52:42
I can't believe it's about 20 years ago now. I've met a lot of type ones in my town. Have you? That's excellent. Yeah. And I was surprised.

Scott Benner 52:54
There you are. I see you people. I think it's terrific. I mean, Arden I think Arden's only friend with type one is somebody she's, she's very close with, who's a friend she met online, but they've never actually met in person. But they talk and you know, they're very close. They're both in college now. And it and I think it's been beneficial for both of them to know each other. It just really has been, you know, I think they met because I think the girl tried to follow me on Instagram and follow Arden by mistake. And that's how that's how they how they ended up meeting each other. So that just can't be said enough. That you need to be able to see yourself in the world around you. It's important. You know,

Anonymous Female Speaker 53:40
I first my first friend in this town, that was a type one had the same eye surgeon as I did. And so she went through it all before I did and was very supportive of that. And I was having a follow up I exam. And she was on Facebook, and she had just had a double organ transplant. She had a kidney, pancreas transplant. And I saw that she was active on Facebook and I said, Hey, you want to you want to visit her? Because I'm in the hospital for an eye exam. And she's like, Yeah, sure. So I went up to her floor and the nurse said she just had a double transplant yesterday. She's exhausted. She can't have any visitors. And I was like, Well, I have it on good authority that she's sitting up in bed on her phone on Facebook right now. Are you sure?

Scott Benner 54:33
So I need so let's go.

Anonymous Female Speaker 54:37
So the nurse checked in on her and let me in. And she interest. She was awake and talking to me and I it was so important to me to see her because I had such a huge question. And my question to her was, do you feel low? Because I'm thinking wow, yesterday you were a type one diabetic and today you're not You know,

Scott Benner 55:01
oh, and does the 85 blood sugar feel low to you? Yeah, but it

Anonymous Female Speaker 55:06
doesn't like and you have a pancreas that's doing it for you like my, I don't know in my mind I thought it's actually feels low

Scott Benner 55:15
gotta be dizzy this girl but no right like it's it's the action it's the action of the insulin that gives you that feeling like the fall like you ever hear people say you can I can feel the fall. And yeah, I can relate to that. Yeah, it's because that the insulin is moving your blood sugar in a way that you know it's not natural and completely natural to so it's something you can feel oh, that's really interesting you still friends? Yeah,

Anonymous Female Speaker 55:41
yeah, that's cool that she doesn't have the pancreas anymore and she did have to get a another kidney but otherwise she's doing great.

Scott Benner 55:49
That's cool yeah sometimes the organs don't make it I interviewed somebody recently who had to go through a couple before the one they have now that seems to be you know holding on so really weird world how long did she not have diabetes for?

Anonymous Female Speaker 56:05
I think it was almost a year.

Scott Benner 56:08
Oh my gosh, that's it seems like I can't tell if that's bad or not like me like if getting the year off is terrific. And just I'll take it or if it's such a letdown when it when you see your blood sugar start creeping up again, like, oh, geez,

Anonymous Female Speaker 56:22
I've heard the pancreas is such a hard one to keep though.

Scott Benner 56:27
Yeah, though, it can be for sure. I mean, organs in general, I like I said, I was interviewing a guy who's had a number of transplants. And he got like eight years out of one and he was thrilled about it.

Anonymous Female Speaker 56:37
Nice. Yeah. So anyway,

Scott Benner 56:40
is there anything that we haven't talked about that we should have something I didn't bring up or something you meant to say that hasn't gotten said? Sure. I

Anonymous Female Speaker 56:46
think I wanted to talk about my mom a little bit. But

Scott Benner 56:50
weekend. Don't worry. I just that's why I wanted to bring it up. So let me ask you before we start, are you less nervous than you were an hour ago? Yeah. There's a moment when you started cruising. And I was like, Oh, she's okay now. And

Anonymous Female Speaker 57:04
I think that at some points, like my ADD kicks in and I kind of go off topic. And then I'm like, where was I again? Okay, but then

Scott Benner 57:11
I haven't noticed you go off topic once.

Anonymous Female Speaker 57:14
Oh, really? I felt like I did a lot. No, I

Scott Benner 57:18
thought you were very clear and linear. And I didn't. I mean, if you listen to the podcast, like I didn't do the I didn't do the pulp fiction thing to you too much. I didn't go back in time, and then come back up here to the President and go back again, which I liked doing. I didn't do that as much with you. But I still thought you were. I never felt like oh, what is she talking about? Like, I never had that feeling one time. So maybe you're being hard on yourself?

Unknown Speaker 57:44
I often am.

Scott Benner 57:46
Yeah, I didn't have a thought like that at all. Alright, so what about your mom? When

Anonymous Female Speaker 57:52
I was nine, we we moved. And I had my first seizure that I remember, in the middle of the night. We had just gotten a puppy. My puppy woke my parents up. And I slept walked, I guess into the hallway right outside my parents.

Scott Benner 58:17
Outside your parents. Sorry. Hey, I'm sorry. I lost you outside your parents outside your parents room? Yep. Yeah.

Anonymous Female Speaker 58:25
And my mom called 911. And can you guess what happened?

Scott Benner 58:36
The dog can play that the little girl that got her is broken. No,

Anonymous Female Speaker 58:39
my mom called 911 and got the DDD. This number does not exist in your area. Really? Yeah. So this was in 1991. And 911 was not something that existed everywhere. And I know that's hard to believe, right? Yeah. So my mom got a an operator who got her to emergency dispatch. And I came to surrounded by firemen in full gear, because they didn't know that what they were responding to. They were all volunteers. I guess they gave me some dextrose brought me to the hospital. But my mom was so impressed by what happened she she joined the fire department.

Scott Benner 59:31
Yeah, that's that's incredible. Also, and you're good I was just gonna say is not off topic, but you're reminding me that we all used to have stickers on our telephones with the phone numbers for the police the fire in the ambulance. Yeah, because there was no 911 there these little square like two inch thicker square and they had the three numbers on them. You stuck them to your phone. So you had the huh you reminded me something I'd forgotten about how about that. How Yeah. And then your mom just like, let's was your I was gonna say we should mom looking to hook up with a fireman but he she was married so that's inappropriate. But what happened? She became a volunteer fireman.

Anonymous Female Speaker 1:00:13
Um, she became a paramedic. Yeah. She's about to retire his doctor and see, she's a forensic pathologist, I should say. And she joined the volunteer fire department, and I went to college in 2001. And in September of 2001, my mom was missing in New York City. Wait, how? He wasn't a New York City Department, but she was in New York City. She just jumped into action on 911.

Scott Benner 1:00:44
Oh, my gosh. So she was in the area. Yeah.

Anonymous Female Speaker 1:00:48
And the fire department she belonged to did go there. I mean, it was in. But they were in the center of it. When it happened. They went to help in the aftermath. But my mom happened to be there on 911. She just kind of jumped into action. And my dad and I didn't hear from her for about a week. She's fine now.

Scott Benner 1:01:10
Oh, a week. She was just received like her, or was she just working?

Anonymous Female Speaker 1:01:16
She was just working. But also all the phones were down. Yeah, no, I remember. So she was trying to get in touch with my dad and I and my dad was stuck on. I want to say the Washington Bridge for hours. So I didn't hear from him for a while. My dad was a professor at the College, Mount St. Vincent. So he was stuck getting out of the city. So you know, both my parents were kind of MIA for about 24 hours. And then then it was just my mom that was missing. And you know, it was September you don't didn't really have many friends yet. Being a freshman in college. Oh,

Scott Benner 1:01:51
my God. Yeah, you're just by yourself at school. While this is all happening. It's very frightening for people who didn't live through it as an adult like we lived in. Well, in central New Jersey when it happened. My wife was working in man, Hatton for years before that, but had just very recently moved to Jersey City to her building got moved to Jersey City. And people's cell phones, like we didn't used to leave our cell phones on all the time off. That's something people know or not because the batteries would die. So yeah, you turn them on to make a call. And you know, now plugging your phone in and charging it as a part of everyday life. But back then, yeah, you wouldn't do that all the time. So my, my wife is calling me, you know, to say, they're evacuating my building. And we're being pushed on foot into, like past the past the highway. They're just making them walk West, basically, away from the city. And later, she found out it's because they used her building as a morgue. And, yeah, they were they were ferrying bodies to her building, which was right on the water. And then just doctors who happen to work in the buildings around were triaging people and stacking, stacking bodies up. But the people they pushed out of the building, they just, they just basically pointed and they were like walk and the cops just pushed you. They just kept pushing them away. So my wife and a girl she worked with, made their way to the girl's car that was parked in a lot somewhere. And they just finally made their way out and got on the Jersey Turnpike, and headed south because she was trying to get my wife home. So I had to call a family member because Cole was a baby. And I basically it just was like, I met my father and on the side of the road. And I was like, here's his bottles. Here's his formula. I put his car seat, my father in law's truck, and I was like, I'm going to go find Kelly. And then I just headed north. But we couldn't, we weren't in contact. So we would pick up the phone at certain intervals and kind of report where we were. And like no lie like we saw each other. We worked it out so we could see each other on opposite sides of the turnpike. And then I just found a place to cross over and I crossed over and grabbed her. I think that whole process of driving what would have been a 45 minute ride an hour ride in a normal day. And then getting her back again. I was gone for about nine hours trying to get her out of the city. Like it was it was really something and then her friend didn't get home till well after midnight after that. It's just a crazy time and you're sitting in college and nobody can find your mom or your dad. Yeah, that's terrible.

Anonymous Female Speaker 1:04:35
Yeah, my dad and I spoke every every night. Remember the first night that we got in touch with each other? We ended the call and then he called me right back and you said you didn't say I love you. And I was like dad, you know I love you. And he's like, Yeah, but you didn't say it. And I think from you know with your mom missing from now on like we need to say it before we say goodbye like every time we speak on the phone, and that became our thing. And then up until he died that was always or never ended a conversation without saying I love you.

Scott Benner 1:05:06
That's a That's lovely. Really very, very lovely. I can tell you that the Manhattan is from my house, I don't know how many miles I can actually figure it out. But you could walk out of the back door of my house. And just smoke was just rising up in the air for days. And I'm, I'm a good hour and I don't know, 15 minutes from the from the city by car. I'm actually looking at it right now I am. I'm 46 miles away. And I could step outside of my house and look up and see smoke. Like it was next to me it felt like, really, really insane. So well, let's say you and your father had this nice thing, right? He said, I love you every time. And did you ever have the feeling that the therapist tried to give you the I'm gonna die early?

Anonymous Female Speaker 1:06:05
Oh, I've thought about it. I think maybe I thought about that even before she said it. But it was, you know, it still wasn't her place to say so I still upset with her for saying it, even if I already thought it.

Scott Benner 1:06:18
Yeah, it's also not accurate. But another thing that my father,

Anonymous Female Speaker 1:06:21
you know, would say a lot throughout my childhood was You're so lucky, your generation is going to see a cure, you're going to be cured. And I think that that also had a little bit of a detrimental part to my self care. Yeah. Like, oh, I can treat my body like crap. Now because I will be cured in the future. Yeah, I believed him. You know, it was my dad, I believe them. Yeah, that's

Scott Benner 1:06:49
a misstep. I understand wanting to say it, but you can't put that in someone's head. Because, like I understand they somebody wants to say that because of a hopeful thing. But I think the very problem you just described as the concern. You know, what if I that makes people think well, then I don't have to take this very seriously, because I won't be here forever. And that yeah, that's tough. No, I'm sorry.

Anonymous Female Speaker 1:07:11
And my I mean, my my parents were pretty renowned doctors, and my dad, you know, it wasn't just like, oh, you know, what my daddy says is always true. But he had some backup to it, I guess.

Scott Benner 1:07:25
If somebody's gonna know, be this guy. So yeah. Well, well, are you interested in like you said, You've been single and you live alone? Is that something you? Are you? Is that something you're doing on purpose? Are you looking for somebody? Or what do you think? No.

Anonymous Female Speaker 1:07:42
I think that that's another thing that, you know, I've been struggling with. I think that some of my other behaviors tend to push people away. I do have tenants. So I'm not alone alone. I do have trouble asking for help, though. So sometimes, even if my one of my tenants is home, I called an ambulance. But no, I'm not single on purpose, I

Scott Benner 1:08:10
guess. Can I ask you a question? You just said like some of your actions can push people away? Do you have examples? It

Anonymous Female Speaker 1:08:17
might just be in my head. Kind of think of an example. I I mean, I I guess the only example that really comes to mind is something that happened when I was in a relationship where I was having quite a few low blood sugars. And once in a while, didn't have enough with me. I wasn't prepared with enough to treat it. And my significant other had to go out of his way to to get something for me. And it was a huge inconvenience. And I think that had a large impact on our relationship.

Scott Benner 1:08:53
What a therapist say that you're looking for somebody to take care of you the way you didn't feel like you were taking care of taking care of a child.

Anonymous Female Speaker 1:09:00
Not really well. I mean, a therapist might say that, but I want to say I am capable of taking care of myself, of course.

Scott Benner 1:09:07
Yeah, no, no, of course you are. But is there any part of you that's just like, what if wouldn't it be cool if somebody else thought about this and not me? I bring it up because we we just saw the kids recently, and it was on spring break. So Arden went to where Cole is we all met there. And Arden spent the first couple of nights Cole's apartment and then we were like, Look, you you know, you stay here. Obviously, you're come back to the hotel, like mom and I got whatever you want to do. And like you can see like, they were having a good time. My son wanted her to stay and she's like, Hold on, I'm sorry. She's like, I'm gonna go back to the hotel so dad can take care of my diabetes tonight. Like she's like, I just want a day off, like from this. And I mean, that was a very conscious statement. But I wonder if if that doesn't happen subconsciously where you just like oh, I wish somebody else would just remember to bring you can juice box so I don't have to do it. look like that kind of thing? I don't know. It's, it's interesting.

Anonymous Female Speaker 1:10:02
Well, in a way getting a Dexcom and an omni pod was that for me?

Scott Benner 1:10:09
Yeah, give it to give it to them. Yeah. Yeah. Well, I think you should date you seem lovely. And I'm sure somebody would be very lucky to be with you. So

Anonymous Female Speaker 1:10:18
I got, I got set up on a date a few years ago. And my friend introduced me to her friend, and I, like for the life of me, you know, you're a great guy, but I don't understand why my friend thought that you and I were compatible. And then he took out his insulin pump.

Scott Benner 1:10:38
Had nothing else in common, but there was nothing else.

Anonymous Female Speaker 1:10:40
I was like, Oh, okay.

Scott Benner 1:10:45
I don't know, it's not always that hard. My wife and I, like, we don't have the same sense of humor. We don't like, like, she thinks about things differently than I do. And I mean, it still works. You know, it's just, I don't know. Anyway, I say, give it a try. It's up to you. Of course, I'm not in charge of your life. But again, I think somebody be lucky to be with you. So

Anonymous Female Speaker 1:11:07
just getting out there and finding a place to meet people. I guess I'm a little skeptical of the online dating.

Scott Benner 1:11:12
It's not that hard. Your girl. Boys will just like, you just just take a shower, look, half clean walk outside, one of us will be like, Hey, what's up? Very easy to impress. You don't have to try as hard as you think. Really not that hard. I think clean and looking like both eyes going in the same direction would be enough. Then your loveliness will shine through and you'll find people but yeah, I don't know. So I can't imagine honestly, like I I don't understand dating. Like I've dated when I was younger. When people were around. I remember my cousin telling me, as I was graduating from high school, my cousin said, Wait till you see how hard it is to meet girls when you're not in school anymore. And I was like, oh, what's he talking about? But man is right. And so, you know, I know. It's hard. Like, it's like, how do you really? How do you get around somebody enough to get a vibe for them? Before you try it out? You can't? Right? So you just kind of jump in cold? And you know, it seems like you might have a little trouble with like that. Like, I mean, you were really nervous just having like being on this in the beginning. So like that initial like, yeah, I can see where it would be hard. How about it work? Is that a bad spot? Probably

Anonymous Female Speaker 1:12:28
inappropriate for where I work now. But I mean, there's been some interest in previous jobs. I guess. There was one there was one. I mean, I guess it's not really dating related. But this place I was working was kind of set up with a bunch of cubicles. And this new guy started about the same age as me, and at the time. And some co workers came up to me and said, Hey, so and so like, he really needs your help. And I thought that they meant like, training him on something on a computer program, or whatever. So I go over to him. And he is daring at his computer screen. He's not responding to anything I'm saying to him. And somebody shoves a juice bottle in my in my hand and says, He has the same thing as you fix him.

Scott Benner 1:13:21
big help. Thanks a lot. And I was just and

Anonymous Female Speaker 1:13:25
use a big guy. I mean, like, basketball player, straight from college kind of size, you know. And I was thinking about how my dad would get violent sometimes. And I just took a few steps back and said, somebody called 911 don't find the other diabetic in the room. What if

Scott Benner 1:13:45
I get low during this? What's gonna happen?

Anonymous Female Speaker 1:13:48
And then like, I don't know, later on, people tried to play matchmaker between him and I but friends. Oh, good.

Scott Benner 1:13:56
Nice. All right. Wow. All right. I'm done trying to help you. I really do appreciate you coming on and sharing all this with us. Thank you.

Anonymous Female Speaker 1:14:06
Did you have any questions on anything else? Um,

Scott Benner 1:14:09
I don't think so. Like it's more of an emotional journey for me when people tell stories like this, like I leave it. I think no differently than the people listening. Like, I feel like I started with you when you were five and and I ended here, you seem happy, which makes me happy. But I don't think that no, no, I don't think that there is anything that you didn't answer along the way that I did. I mean, I wondered about a lot of things while we were talking but they all came out during the conversation. I feel I feel pretty good about it, actually.

Anonymous Female Speaker 1:14:45
So I currently maintain myself at about a seven a one C okay. I feel like I do have room to improve but not too drastically or rapidly. Right? I'm on the Omnipod Five now, and it's going well, for me, that's where I'm at.

Scott Benner 1:15:04
That's excellent. Good for you. comfortable and happy. is a perfect place. Yeah, yeah. Do you think you'll be in the sixes?

Anonymous Female Speaker 1:15:12
I think now that I mean, it's only been a month since I've been on the Omnipod. Five. But I already have such a reduced reduction in my fear of getting low. Good, that I feel more comfortable being in the lower one hundreds where I used to. I used to eat like a little bite of chocolate or something if I was 99 or 100.

Scott Benner 1:15:35
Now you wait to see what happens. Yeah,

Anonymous Female Speaker 1:15:37
yeah, cuz I know, like, my pump isn't going to let me keep dropping. So I feel more comfortable. And I'm already at a time and range at about 70% time and range, where it used to be like 3040,

Scott Benner 1:15:52
I should try to slice off about 10% of the confidence that I gave my daughter and give it to you. Because there's times on text here. I'm like, Hey, this is not holding up. You really like could you eat something, please? And she's like, it'll be fine. I'm like, it's not, I'm watching it, it's not gonna be fine. And she's just like, the opposite of that. She's like, it'll be alright. It'll be alright. And then when it's not, she's like, alright, she handles it. But there's moments when she's like, 75. And I'm looking at trends. And I'm like art, and this is going to be 60 in like, 15 minutes. And she's like, No, I might be alright. She's like, the algorithms trying to fix it. I'm like, I know, I see. But I don't think that's how it's gonna go. And I wish I could just take a little bit of that. Just I'll slide it over to you. Because it sucks to hear that somebody is still like, it has your level of understanding, but because of past situations, like you're, you're still more comfortable around like 120 130. Right? Yeah, absolutely. But I think you'll get there. I mean, I think the algorithms do a really good job of, of mimicking that confidence that you're talking about, like, well, at least this thing, the way I tend to think of it is, I know, it's not 100% I'm not going to get low, but I know there's a thing helping me to stop from falling like a stone. And that that's, that's pretty helpful. Like, you know, like the idea that it's been taking my basil away for 45 minutes, because it's predicting this low. I've seen Luke do it. And I'm sure you know, control IQ and all of them. Like they're trying to stop, like a drastic low. And there's something I don't know, there's something more comfortable about a drift to 60 than like, Hey, I'm 90 and then 10 minutes later, I'm 60. That's a

Anonymous Female Speaker 1:17:36
different world. So I used to be a two to three juicebox a night. person before starting Omnipod five, I was on Omnipod arrows. Wow. Ever since starting Omnipod five, I haven't had any juice boxes. I can still be in the club, though. Right?

Scott Benner 1:17:52
Oh, for sure. But this is such a that's such a wonderful like, improvement.

Anonymous Female Speaker 1:17:58
It's a big difference. Yeah,

Scott Benner 1:18:00
yeah. No, that's fantastic news. Oh, wow. Good for you. I mean, just the calories alone, but the unbroken sleep is a big deal. And it confidence when you're sleeping. And that's all like really, really important. I'm glad for you. And

Anonymous Female Speaker 1:18:16
I don't feel the need to go to bed with an elevated sugar.

Scott Benner 1:18:19
Good for you. That's a huge leap. And how long have you been doing it? a month. Oh, my gosh, this is terrific. Yeah, you'll have you'll be in the sixes in like three months. Probably. Thank you. Yeah, no, just from that, just from the thing. How long have you been listening the podcast?

Anonymous Female Speaker 1:18:35
I started not too long after you started. And then I kind of forgot about it. Sorry, door. And I went like a few years without listening. And then I picked it back up when I started considering upgrading my pump. So probably bout a year ago. I picked it up back up again. Oh, good for

Scott Benner 1:18:57
you. While you were there. In 2015. You were listening. Yeah. Wow. Geez, I thought I was talking to myself back then. Thank you. Terrific. The first year of the podcast had as many downloads as yesterday had. Which is really bizarre to say all out. But I really I really thought that like, and I and that first year, my wife's like, what do you think I'm like, It's going great. I was like, I can't believe I got 25,000 people to listen to the show this year. Like that's so cool. You know, I was I was all excited. And and now like there are days that go by, like if there's like the like, I don't know, like holidays pop up and you get like a little reduction on a holiday or something like that. I'm like, Where'd everybody go? What are you talking about? This is like 23,000 people downloaded the show yesterday. And I was like I know but I was really expecting 25 out for 24 and a half. And she's like, What are you talking about? I'm like I have standards. But that's it's very interesting to hear that somebody that was there in the beginning. That's very, very interesting for me and cool to hear. Thank you very much.

Anonymous Female Speaker 1:20:04
You're welcome. Of course, the sound quality is improved.

Scott Benner 1:20:09
I was gonna say, at least I bought a better microphone. I had a great microphone back then I just didn't know what I was doing. And this one, this one's better. This microphone is so cool, than if I just go a couple of steps away. It won't pick my voice up. And so in this scenario, when I don't have access to a recording studio, you still get a good silence around my voice. With this microphone. I wish I would have I see. Yeah, I wish I would have thought to, to do it sooner. Like the other day I was recording. And a trash truck went down the street. And the microphone didn't pick it up. I was like, Oh, this thing's terrific. But oh my gosh, yeah, I were doing the best jobs now. And people were really enjoying it, which is something I didn't I was like, I wonder how this is gonna go over. But we're running like a best of episode once a week. And I'm getting a lot of

Anonymous Female Speaker 1:21:01
I've heard a couple of them come up this past week. Yeah. And I'm getting good feedback from

Scott Benner 1:21:05
people. But it's the sound like when it pops up. And I hear that old microphone. I cringe. I'm like,

Anonymous Female Speaker 1:21:10
yeah. Anyway.

Scott Benner 1:21:14
It's cool. All right. Well, thank you very much. I'm gonna get

Anonymous Female Speaker 1:21:18
that this is an after

Scott Benner 1:21:20
Oh, or good question. I had this thought about 45 minutes ago, and I don't think it is. Cool. Yeah, I don't think it is. And, you know, I try to say this every time it comes up, but I don't love that the after dark episodes are called after dark episodes. It's not a function of something I would do. It's a function of people listening. So I what I learned is, is that people need a warning sometimes. And not everybody's cool here and about like, a heroin Bender, and and, you know, and stuff like that. I don't see it that way. Like, I wouldn't mark any of them like that. But I don't know. I mean, you had an eating disorder, but I don't see that that's, you know, suffering. Yeah. I mean, I know, I don't see this was an as an after dark. Do you think so? What did you think? Um,

Anonymous Female Speaker 1:22:13
I didn't think so either. But, you know, it's just kind of curious.

Scott Benner 1:22:17
Ya know, I wondered about it. Like I said, about 45 minutes ago, and I didn't break down anything or, or have any thoughts that would make me think that way. So no, I don't think so. All right. Great. Excellent. Hold on one second for me. Okay. Sure.

I'd like to thank my anonymous guests for coming on the show today and sharing her story. If you'd like to wear the same insulin pump that Arden does, all you have to do is go to Omni pod.com/juice box. That's it. Head over now and get started today. And you'll be wearing the same tubeless insulin pump that Arden has been wearing since she was four years old. A huge thanks to us med for sponsoring this episode of The Juicebox Podcast. Don't forget us med.com/juice box this is where we get our diabetes supplies from you can as well use the link or call 888-721-1514 Use the link or call the number get your free benefits check so that you can start getting your diabetes supplies the way we do from us med. Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast.

#1087 After Dark: From Depression to Grandiosity

Jules has type 1 diabetes and was diagnosed with bipolar disorder at 19.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, welcome to episode 1087 of the Juicebox Podcast.

Today's episode of the podcast is an after dark. I'll be speaking with Jules who is 25 years old and diagnosed with type one diabetes two years ago. Today we're going to talk about how Jules experiences swings from deep depression to grandiosity, and so much more. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you'd like to save 40% off of your entire purchase at cosy earth.com, all you have to do is use the offer code juice box at checkout. If you enjoy this, after dark, there are dozens more. There's a list available at juicebox podcast.com. Click up top where it says after dark or in the private Facebook group in the feature tab. There's lists of all the series. And you really should check out that private Facebook group. It's absolutely free, it has close to 44,000 members and it actually adds 150 new members every four days. There's an amazing conversation going on there right now that you would learn from enjoy or be able to help with this episode of The Juicebox Podcast is sponsored by ag one. Drink ag one.com/juice box when you use my link with your first order, you're going to receive a free welcome kit. That's a scoop a shaker in a container, you're going to receive five free travel packs and a year supply of vitamin D. That's all with your first order. If you use the link, drink ag one.com/juice box.

Jules 2:00
I'm Jules. I'm 25 I'm an artist and I live in Philly. Okay.

Scott Benner 2:07
Artists self proclaimed went to art school. How did becoming oh just

Jules 2:12
fully self proclaimed? Yeah, I've been doing like fiber arts since like, as long as I can remember. And I write poetry things like that.

Scott Benner 2:21
Do you make a living at it? No, no. What? How do you make a living?

Jules 2:27
Right now I'm unemployed.

Scott Benner 2:28
So how old were you when you were diagnosed?

Jules 2:31
I was 23. Oh, this

Scott Benner 2:33
is recent. Yes, yes. Okay, two years ago. Was it out of the blue? Or is there type one in your family and you were kind of expecting?

Jules 2:44
No type one doesn't actually run in my family. Which is why it was like so shocking. When I was diagnosed. My dad and my aunt have type two. But nobody in my family has type one.

Scott Benner 2:55
I see. How about other autoimmune issues? Ranging

Jules 3:00
my sister? Yeah, my sister is celiac.

Scott Benner 3:05
Sister's celiac. Any bipolar in the family? Yes. Do Can you just like loosely say where you don't need to be like it's my Uncle Jim. But you

Jules 3:18
know, I it's actually me. I've been diagnosed with bipolar. How long? I was diagnosed when I was 19. So that's what like, six years ago.

Scott Benner 3:27
Okay. Anything else? Thyroid? No, no. Okay. So for you your two diagnosis is our type one and bipolar.

Jules 3:37
And I actually have migraines to migraines.

Scott Benner 3:40
Thank you. All right. Tell me a little bit about when you Well, let me ask a question first. Where are you? Which were you diagnosed with first? Bipolar, bipolar? 19? I'm sorry, you said that. Okay. What's that like? And what leads up to the diagnosis. Um,

Jules 3:58
so it's actually like, really, like, so dramatic. I saw I was having a really bad migraine spell. And a doctor prescribed a steroid for me. And he didn't listen to me almost at all. He was just like, here's a medicine. He was like, this will be an aggressive treatment. And I said, Well, I'm struggling. So I will take this medication and trust you that it will be safe. And in fact, it was not. And I mean, it had a ton of like physical side effects. Like I was really dizzy and I wasn't able to eat or like walk I was really weak. But then I started, you know, not sleeping very much. Having all of the like, typical manic symptoms of like thinking I was the smartest person in the world. You know, having so many ideas, thinking really fast talking really fast. But then actually, like this is kind of where my diabetes story starts. Even though I wasn't diagnosed until I was 23. I started taking this medication called Zyprexa. Okay, Hey, do you know that one? I'm looking it up as

Scott Benner 5:03
you're speaking? Gotcha.

Jules 5:04
Yeah. So it's an anti psychotic. The thing was the practices that it's been linked to diabetes, typically type two. But and I want to say like 2004 2006, there was a study or not a study, but there was this like class action lawsuit from a bunch of people who had taken this mat, and were like, Hey, I have diabetes now. And I did not have diabetes before I took this medication. And of course, like the drug company, like paid everybody off, they never admitted that it was the medication. But it's still sold today, which is, like blows my mind. But yeah, I mean, I think that's like how my diabetes started developing. And I will say, like, I don't think it's only the medication. I think it's also like, like environmental. Cause, like, you know, trauma can affect the development of diabetes and things like that. I'm sure there's other things that have affected me. And I'm sure it's in my genes, even though no one else I know. How's it?

Scott Benner 5:56
Yeah. What was? So take me back before that, like, What's life? Like for the first 18 years? Is there any indication? Are you depressed, overly moody? Like, is there anything going on? Do you have a lot of trouble in your life? Or was it just like, clear sailing, and then all of a sudden, the headaches came?

Jules 6:15
No, I mean, I've been depressed since I was like, 14. Okay. Yeah. And like, I think I had kind of like light, kind of manic symptoms, like I would have times where I'd be feeling really down and I'd be like, Oh, my God, like this so amazing and beautiful. But I was obviously like a child. So it didn't kind of manifest in the same dramatic way that it did when I was 19.

Scott Benner 6:37
What's the I want more context for? I felt like the smartest person in the world? Yes,

Jules 6:43
I think it's kind of I think they call that like grandiosity. But it was essentially like, I was just kind of up all night thinking, having all of these ideas and like, seeing the big picture, at least, like what I thought was the big picture. And I was like, Oh, my goodness, no one has ever thought these things before. So that's kind of where that came from.

Scott Benner 7:05
Did you fix the world during your? Did you write down a manifesto or anything? Rachel's was like, I got this hold on a second. Looking now, yeah, looking back on those, were your thoughts valid? Or do you look back at them when you're not manic? and think, oh, wow, these are like grandiose thoughts.

Jules 7:25
I mean, I think some of them are. One thing I was really struggling with. And so that I was in college when this was happening. And I think I'm sure you know, this, a lot of colleges like do not treat their disabled students very well. And so that's one thing. I was like really thinking about a lot of like, how am I friends like interacted with the college and how I did, I was like a person who had migraines. And so I was like, Oh, my gosh, no one is seeing how all of these dots are connecting. And I mean, like, it was true, but I also think that people probably did, yeah.

Scott Benner 7:56
What was your intention? When you went to college? What what did you think you were going to study? I

Jules 8:02
actually thought I wanted to be an engineer and be a math major, but I took some math classes and decided that I hated it. Were

Scott Benner 8:10
you good at math prior to that? Yes, yeah. Okay. Did you you didn't graduate? Correct.

Jules 8:17
I did graduate.

Scott Benner 8:19
Oh, you did? Okay. Cool. I wasn't sure if this struggle was enough that got you out of it. So you graduated with a degree in anthropology,

Jules 8:27
anthropology? That

Scott Benner 8:29
was a big switch. Right? Yeah. Is did you make that decision after your bipolar diagnosis or before? It was before before Okay, so the headaches come the medication comes for the headaches? Is that what they're for originally? Because I'm trying to follow it you said like there's first of all my expelling the drug raid z y p r e XA. Yes. Okay. So the only like, the only results I can find searching is that there was looks like in 2009, Eli Lilly pled guilty to a charge that illegally marketed their anti psychotic drugs, a proxy for an unapproved use, there was a payment for that to settle civil lawsuits. That's an NBC News article. And then the New York Times says Lilly agreed to pay 500 million to settle 18,000 lawsuits from people who claim they had developed diabetes or other diseases after taking it. And that list the drug is being for schizophrenia or bipolar disorder. Okay. So you take, but they give you that just for the headaches or do you think at that time the doctor saw you as bipolar?

Jules 9:45
No, so I took a steroid for the headache. I'm sorry. Okay. Yeah, okay. Yeah. And so the steroid kind of like set off all of those really intense mental health symptoms.

Scott Benner 9:57
I see headaches, steroids, then this Zyprexa then the diabetes. Hmm, okay. But your sister has celiac? Yes. Gotcha. All right. I think I understand. Okay, so does the medication help for the bipolar? Or where does it land you? So

Jules 10:17
I mean, I think to some extent it helped, but mostly in the way that it like numbs you out. And I actually don't take it anymore. Do you want to hear the story of like my diabetes diagnosis related to the medication? I

Scott Benner 10:29
want to hear the whole thing. Go ahead. Yeah. Okay.

Jules 10:32
So when you start taking, so actually, when I first started taking this medication, they like lied to me. They didn't tell me it was an anti psychotic. They were like, it's a mood stabilizer. And I was like, Oh, my gosh, I love having stable moods. So I started taking it about, I want to say like two weeks, maybe like three or four weeks after somewhere in that timeframe, I saw a different psychiatrist. And he was the first one to say like, Hey, by the way, you know, some people will get diabetes after taking this, but he didn't, he really downplayed it, he didn't make it seem like that was a big deal. Or something that happened frequently. And it was also the whole, you know, like, Bipolar is a lifelong diagnosis. And so you'll need to be taking this medication the rest of your life. And you don't necessarily need to take this particular one. But right now you're unstable. So you have to take it in, like whatever. So I took it for a long time. One of the big problems is it probably could have been caught earlier if I had like regular access to a psychiatrist. But I was in college and like psychiatrists are expensive. And like the one who took my insurance I like really did not like

Scott Benner 11:44
I got up this morning, I went downstairs, I got my shaker, my scoop, and I put a scoop of ag one of the shaker filled it with a cold water and gave it a good knee like that, you know, I mean, and it dissolved, and I drank it. Well, when you stop my shaker, and was on my way. I bet you I didn't spend. I mean, let's be fair, two minutes doing that, probably. And it tastes great. I know ag one tastes great, because I've tried other supplementary inks. And guess what? They were bad, horrible. And it made my tongue mad at me, but not ag one. I love ag one. It's easy to mix, easy to drink, easy to do. Ag one can replace your multivitamin, your probiotic, and more in one simple drinkable habit. Since 2010. They've improved the formula for ag 152 times this is in their pursuit of making the best foundational nutritional supplement possible. And they do that by using high quality ingredients and rigorous standards. So if you want to take ownership of your health, it starts with a G one. Try ag one and get a free one year supply of vitamin D and five free ag one travel packs with your first purchase. Go to drink a G one.com/juice. Box. That's drink ag one.com/juice. box. Check it out. Why did you not like the one that you took your insurance? He

Jules 13:08
was just like, not very compassionate.

Scott Benner 13:13
Okay. Oh, that's very matter of fact. Yeah, I say, I have to say I can't find any, like, you know, online. I can't find any connection between Zyprexa and type one diabetes. It seems like yeah, it's specific to type two.

Jules 13:32
Yes, I agree. Yeah. So the reason that I think it's connected, and this is just like anecdotal, but I've noticed. So I mean, like, I stopped taking this medication for a while. I started taking it again when I had like another crisis. And at this point, I was already, like diagnosed with type one. And this was in 2021. So this was the year after my diagnosis. I started taking Zyprexa again, and obviously like in the first year, I really didn't need very much insulin at all. I think I was taking literally like two units of Joseba and like some Kenalog for mealtimes. But when I started taking the Zyprexa, my insulin resistance went up like so much and by like, maybe like month one or two of taking it again. I was taking like 30 or 40 units of insulin all of a sudden, okay, as opposed to like the five or 10 that I had been taking before. Okay. All

Scott Benner 14:25
right. I wonder. Well, I guess there's no, it's so hard like because, like you said, it's completely anecdotal. I mean, if you had type one you might have been honeymooning and then all of a sudden not been and needed more insulin as well. Yeah. Yeah.

Jules 14:41
So I mean, my like working theory in my brain of how this might have happened is that I'm sure I have like the gene or whatever that influences type one. What I think I think like probably my diabetes had been developing for a while just kind of like under the radar, but all of that insulin resistance that I started having when I saw Due to taking the medication, you know, made my pancreas work a lot harder. And so like part of it was being attacked by me my immune system. Part of it was working really hard. And I'm sure that didn't help with like the progression of the disease.

Scott Benner 15:13
I also wondered, did you ever get a diagnosis for the headaches? Yeah. What do they think causes those?

Jules 15:20
They think it's just migraines.

Scott Benner 15:21
Migraines. Okay. Yeah. Okay. So it's just through school, you're dealing with both of these things? Probably not the not the diabetes after your graduation. Yes. But are you dealing with them? Like, like, Let's do with them one at a time. The bipolar thing comes up your family who is helping you? Are you on your own with this?

Jules 15:48
Well, in theory, my family was helping you but they didn't really do anything. That was like actually helpful, if that makes sense. I said, my dad just took me to the hospital. He, yeah, he like took one look at me and was like, You're doing bad. And like, took me to the ER, and I went inpatient. And that was obviously like, a really horrible experience. Going

Scott Benner 16:11
into a hospital for mental health stuff is a bad it was a bad experience. Yes. Did you go in voluntarily?

Jules 16:22
Technically, yes. But I didn't really have a handle on like, what was actually happening, like, because my migraines had been so severe. And I was having all these side effects from the like steroid. I thought I was like, going to the hospital for like, all those physical things that were going on. And it wasn't until like, a few days later that I realized I was like, Oh, I'm in psychiatric care right now.

Scott Benner 16:44
Oh, wow. So you were in such a state that you weren't even certain how that happened? That's interesting. I was I was so out of it. Yeah. Do you? Have you talked to your like your father, your people in your family afterwards that did they described you? What about your, like, your self made them say, Oh, this is Eddie has to go somewhere?

Jules 17:06
Well, I mean, I think like my dad saw me like not being able to walk and things like that, or like not being able to walk long distances and being really fatigued. But I think it's actually kind of funny looking back, I like had this whole master plan of like, how I was going to sue my college for all of like, the disability discrimination that was going on. And my dad, like, heard about that and was like, red flag. Oh,

Scott Benner 17:28
this sounds wacky. Gotcha. And nothing else. And like your dad didn't ever say like, Oh, I've seen this before or so this is all new to him. Right? Yeah. Wow. It must be difficult. Have you think about that ever? Like, like, what a? I mean, because it's happening to you. So you obviously have one perspective of it. But people around you who are just like, you know, live in their lives, and there's jewels, and you know, and then all of a sudden this stuff starts happening? I don't know if I would know what to do, either. I guess that's what I'm saying.

Jules 18:02
Right? Yeah, absolutely. And that's something that's been really hard for me to kind of deal with. I've like knowing how harmful that experience was, but also understanding like, he thought he was doing what was best for me.

Scott Benner 18:15
Yeah, yeah. How and tell me more about the experience and, and why it was harmful.

Jules 18:21
And mostly, I was just like, I didn't, I had no idea what was going on, like, no comprehension of, like, why I was there. And like, I mean, so many, like, just weird things kind of happen. One of the biggest things is that I wasn't sleeping. And a hospital keeps you on a pretty regimented schedule. And so they would like, turn my lights on at eight in the morning and get me up even though I was up until like, six in the morning. So I was just like, so, like, confused. So out of it. One of the other like, super weird things that happened is that they put me in a substance abuse group. Even though that was like not an issue that I was experiencing. Okay,

Scott Benner 19:03
were you Yeah, were you using anything at all? Yeah,

Jules 19:07
I mean, I was but it wasn't to the level of like, like disorder or like something that was harming me.

Scott Benner 19:13
What were you doing at the time? This weed? Okay, and uh, but they heard weed and then put your right into substance abuse. Right? Yeah, the weed help you at all with any of this or? Oh,

Jules 19:24
yeah, I use like medical marijuana. Now. It's really helpful. It just helps with my pain and like anxiety.

Scott Benner 19:32
So you have so tell me about the ebbs and flows of bipolar like you're more functional at times and then manic do you get depressed then are you just manic and

Jules 19:44
oh, yeah, I got so depressed. So what's funny is that since my bipolar diagnosis, I've actually like, worked with my current psychiatrists to kind of like get on diagnosed with that actually, because every time I've had like a man neck like episode, it's been caused by something physiological. So like that time it was the steroid and 2021 like pretty shortly after I was diagnosed with diabetes, I started I like first started taking insulin, and I was taking too much. And so I was getting all of these low blood sugars in the middle of the night. Yeah, and I'm sure you know, like how blood sugar affects you. It's awful. And like, especially when you're waking up every night at like, two in the morning with it. And I was getting all of these like, you know, shaking, feeling really tense, feeling really scared, and not being able to make it back to sleep. And that kind of like escalated into like me, just having all of those like symptoms again, like, especially when my body doesn't sleep like that's when kind of like all the wackiest, like thought patterns start happening?

Scott Benner 20:49
Does the weed help you sleep?

Jules 20:52
Sometimes Sometimes?

Scott Benner 20:53
How much do you have to smoke to get an impact? Like take a couple hits? Or you have to get blasted? Or like what's the what's the, the amount that helps you? Um,

Jules 21:04
so I actually typically take like concentrates from the dispensary. And I do have to take like a good amount, because I just like have developed a tolerance at this point.

Scott Benner 21:15
Right? Are you vaping? It? No, not typically? No. Okay. Um, okay. So looking back on all this, because it's interesting, because, well, let me let me say why I find it interesting. Because you're a person in the middle of an episode, I don't know what to call it. I'm saying episode. And you're also trying to judge what's happening to you. And, and so I can see somebody listening and saying, Well, Jewel says it was a bad experience. But Jules was also in the middle of, you know, some sort of a breakdown in a crisis, and so on. But I wouldn't want to dismiss your experience. So how do you make sense of the input that's coming into you? And how do you judge it?

Jules 22:04
What do you mean, like the input?

Scott Benner 22:05
Well, like when things are happening around you? Like, like, is it not possible that if like, you're like, you know, I got put into a substance abuse program, but it wasn't right and blah, blah, blah. But like, is it possible that a person off to the side who's not going through what you're going through would say, Yeah, I know, Jules feels this way. But this is very necessary. And like, do you know, you mean, like, how do you? I guess it feels like that the world is coming to you through a different lens. And I don't know how to separate what is actually happening from what you feel like is happening. I don't know if I'm being clear, but is that better?

Jules 22:43
Okay, okay. Yeah, well, so I mean, what I would say is, sorry, I'm gathering my thoughts go play. But my so my dad, I'm sure it was like, Yeah, that was absolutely necessary. But I, I actually, my wife and I were together at that time. We weren't married yet. But we were together. And one thing we've talked about kind of like consistently since that happened is that there were ways that I could have been taken care of that didn't involve a hospital. Like mainly, when I kind of get into that like manic like headspace. It is a lot more like I just need help taking care of my physical body, because it's really hard for me to eat, and like sleep and stuff. And if that stuff is taken care of, it's not really like I'm a danger to myself. It's just kind of like I'm having a bad time. And that's kind of what was going on. Like that first time that's ever happened. was like, I would have been okay. Not going to the hospital. But that's just kind of like how it played out.

Scott Benner 23:40
Yeah, I guess the beginning, like, you know that now, but in the beginning, nobody had a context for that at all.

Jules 23:46
Right. I see. Oh, sorry. And like, my dad had never seen me like this before, right.

Scott Benner 23:50
He's probably scared. Yeah, you have. Okay, so I'm sorry. You said you're married. How long? You've been married?

Jules 24:01
Since 2019. So about it'll be four years in August. Okay.

Scott Benner 24:04
But you knew your wife prior. You've been dating for a while I see. Married Gotcha. Okay, so how does that work in a relationship? Like, like, because I one thing I didn't get an answer to, and it's just, it's my fault. I got away from it. But I'm assuming there's ebbs and flows to your, to your state of being like, how long did they last for?

Jules 24:28
So depression loss, like way longer, then? Well, that's interesting. An interesting question, I would say so I think I was telling you about how in 2021 I was starting to have like more like manic like symptoms because of those low blood sugars that were happening. And that kind of like set off a train that was going for like six months. Like I just like really did not sleep for more than like four hours for like six months straight and not really We affected me, I think like, the biggest way that affected me is that it's really hard to keep track of insulin. And like when you've taken out what your blood sugar was, I kept forgetting if I had taken it or not. So I guess that's a little bit of a no,

Scott Benner 25:15
no, no. But exhaustion. I mean, already is going to impact blood sugar. And right, and I see what you're saying. So you get so tired. You can't even track what's happening.

Jules 25:25
Right? But it was scary. Yeah, it's like scary to not be able to do that. Yeah,

Scott Benner 25:30
I mean, that you because right, you get into that moment where you're like, do I need insulin? Or don't lie? If I give myself some am I gonna get too low? Or if I get Yeah, well, that's terrible. So how did you did you? Are you were you able to figure it out or just live like that for six months.

Jules 25:50
I kind of just lived like that. I ended up going to the hospital again in July of that year. Because I that was like, one of the things I was experiencing. I was like, I can't do this by myself. And I was like, for some reason, I was like, I trust a nurse at a hospital to do this. For me, even though like they they really had no idea what they were doing.

Scott Benner 26:15
So did you check yourself in for diabetes reasons? No, for mental health, for mental health, but But thinking like, at least I'll get some help with my diabetes while I'm there as well.

Jules 26:26
Right? It was like, at least I don't have to worry about this aspect. Yeah, my mental health right now. Like I can just focus on like, my actual mental state. Right.

Scott Benner 26:35
So So was that a valuable experience for you?

Jules 26:39
I would say also, no. I think like, I mean, I honestly think just like, from my first experience going inpatient, I don't think I realized, like how much trauma was in my body from that experience. And then I went again, and I was just having this like, really awful trauma response that I didn't even know what was going on. I thought I just had some like mystery illness. But I was like, you know, I, one thing that's super weird that happens to me sometimes is my hands and feet will get really cold. And I learned that that's because like when you're in fight or flight, all of your, like blood flow will go to your major muscle groups, as your body's like preparing for you to like run away, or like fight or whatever. Yeah. Um, so I was like, really tense my hands and feet were really cold. I was shaking all the time. And it like, I was like, Is this what like, withdrawal is like, but I wasn't withdrawing from anything. So it was just like a really, it was a really intense experience, then I think my biggest issue with like, a psychiatric hospital is like, the medication aspect of it. Because they really just don't tell you what the medications are or what they do. They're just like, we think this will help you. And I took this one medication, it's like an older anti psychotic that just like really was so uncomfortable in my body. Like it really made the muscle tension so much worse.

Scott Benner 28:05
That's crazy. I mean, that's just it's yeah, it's the idea that you're so feeling something like like, obviously, you know, like fight or flight as an example. It's so necessary, but it gets turned up to a million. And then all of this happens, and I don't know how you're supposed to. I don't know how you're supposed to traverse that, you know, like, it's just, it's like, the switches in your head are just sending too much of one thing or not enough of another and, and then these are like the physical manifestations of those things happening, then that you don't match society's idea of how you should be and so they try to medicate you to put you back. Well, what would you want to have happen?

Jules 28:57
So this is actually something I think about a lot now that I've had like multiple hospitalizations, because I never want to go back. It's traumatizing. It's awful. I don't think any like psychiatric survivor thinks that they had a good experience. But so one thing that I've been like working on length the past, kind of like, what year is it? 2023. Like year, year and six months, is kind of like building support systems in order to survive that kind of thing again, because like I said, it really is just as long as I can, like, eat and sleep like I will be okay. Like it's not necessarily like, bad or wrong to feel all of the symptoms that I feel. It's just kind of like, if I can't take care of my body, then I'm like not going to do well. So one thing I've been working on is like kind of getting, like friends and people in my community to kind of like just be on deck. So that like if that happens again, they can like come over and just like sit with me and Like, you know, make me a sandwich or something. And then the other thing I'm working on is just kind of like being, like allowing myself to just, like, feel more safe with my emotions. I think that's another like aspects that made it really hard is that, you know, like the first time I had like any kind of like dramatic feelings in front of my dad, like, that's when I went to the hospital. And so now my body kind of associates like, Oh, you're having big feelings? Oh, you're going to go to the hospital now? Yeah. And so I'm trying to kind of, like disrupt that in my brain and be like, actually, like, it's okay to feel scared or feel really sad or things like that. Right?

Scott Benner 30:39
and express yourself without it, landing you in the hospital? How high? How successful have you been with pulling people like that together in your circle?

Jules 30:51
Um, well, the thing is, is I haven't had a super like crisis since this has happened. But I have like a couple of close friends who I've texted and been like, hey, like, if this happens, would you be able to just like, come over? And they were like, yeah. And so that's kind of like where we're at in the process right now.

Scott Benner 31:09
Do you? Do you think just knowing that they're willing to help is valuable?

Jules 31:14
Yeah, for sure.

Scott Benner 31:16
Yeah, I would imagine, right? Like, just to kind of keep away the fear from looming, right? Isn't does it help talking about it like this? Or does it bring it up and make it uncomfortable?

Jules 31:28
I know, I'm not feeling very upset at all right now. I think it feels good to like be less than two.

Scott Benner 31:33
Okay. Yeah. I, it's interesting that you've kind of taught yourself to, like, like the what you just said, like, I'm not feeling upset right now. I thought, Oh, I didn't ever consider if I'm upset or not. Yeah, you know, I just am or I'm not saying the same with like, happy, sad, bored. Like all of it like I, I don't see you almost are almost taught yourself to step outside of yourself to examine yourself. So you can make decisions that try to help you get to where you want to be? Yeah, it's interesting. What are your goals, then? Are you hoping to work? Are you hoping to do your art like? Yeah,

Jules 32:16
so I'm actually I just completed a certified peer specialist training. Are you familiar with peer support?

Scott Benner 32:23
I mean, I know the concept actually. Yes. Okay. Yeah.

Jules 32:28
So I have this certification in Pennsylvania that I would need in order to like work in that field. And I'm currently work looking for employment, like within the peer support specialist, you know, field.

Scott Benner 32:40
How long did it take to get the certification in

Jules 32:44
Pennsylvania to 75 hour training, and it was spread out over like four weeks.

Scott Benner 32:48
I feel like there's somebody else who's been on the show, who had their struggles, and then went this route with their profession. And they're doing really well now. But I don't know if it's exactly peer support, but I do remember his name. So I'm looking it up right now to see if I can figure it out. Hmm, interesting. I'm going to try to figure it out and get back to you on it. Because I don't want to take up our time here doing this. With I don't want to I don't want the silence while I'm figuring it out. And so do you think that the process of helping other people will help you stay on track?

Jules 33:29
Yeah, I absolutely do. I think like, the biggest thing for me is that I don't believe that psych ward should exist, like at all. I think like right now, like, as we are like, they are an important function of like, if you really don't have a place to go where you can be safe, like that can be a place. But I think just the concept of like locking someone up. Yeah, is really harmful. And I think that like, as a society, we kind of need to build more pathways for people to like, you know, maintain safety through a crisis. And I think peer support, have you heard of a peer respite house before?

Scott Benner 34:08
Peer respite house? I haven't heard that. No. Yeah,

Jules 34:13
so it's like similar to a psych ward in that it's like a crisis center, you can It's open 24 hours, you can go there. But the like, main difference is it's based on like the recovery model, not like the medical model that a psychiatrist would use. It doesn't lock you up, they won't like require you to take medication. And it's just kind of like, a safe place for you to go where you can, like meet a peer supporter and just kind of like, survive. And so that's kind of like, the direction that I would love to see happen of like, there isn't one in Philadelphia, which is where I live, you know, like my ambition for myself, which I don't know if will be realized, but like, my ambition for myself is for there to be one in Philadelphia and like, if that means me starting it, I think that'd be really cool. Like, I would love to do that.

Scott Benner 34:58
How do you You, like envision that working? So when someone's in a crisis, you would bring them in? And do what like, Well, how would it be different than the model that exists now?

Jules 35:13
Well, the biggest thing is that I think I like mentioned this a second ago is that peer support is based on the recovery model, which is basically saying like, and I mean, this is also my personal belief system, I don't necessarily think like psychiatric disorders are like a disorder or something wrong with you. But the recovery model also says, like, you know, you have strengths, and we want to work with you and your internal resources, like in order to kind of like, build you back up and like, bring you back to a place where you feel safe. Versus like a psychiatrist, or like a psychiatric hospital would be like, you know, you're having symptoms, you have a disorder, and so we're going to medicate you for this disorder. So that's the main difference. I think, just in general, like the, I think, the most important differences, honestly, like, there's no lock on the door. I think that's like, what can make us like word the most traumatizing is that, like if you're having a bad experience, so you can't just leave. And if you're in, like a respite house, like that is open to you and you're allowed to, do

Scott Benner 36:18
you think that they're not allowed to leave those situations that people aren't allowed to leave those situations? For safety reasons?

Jules 36:26
I mean, that's what they say. Yeah. I mean, I think like, in my experience, a lot of it is that they want to because you're taking medication, they don't want you to leave until you're kind of like on a like, quote, unquote, stable dosage of it. And you're like, symptoms have kind of evened out, which takes time. And I mean, they like, in theory wants to set you up with like, some kind of outpatient treatment program. But that doesn't actually always happen. Like my dad was recently hospitalized, and he kind of just went to like, nothing.

Scott Benner 36:59
He went to say that I'm not sure I understand what was he hospitalized for?

Jules 37:03
He was hospitalized for like depression and anxiety. Okay.

Scott Benner 37:07
Oh, that's interesting. So did did your experience help your dad, like bring his to light? Or did he know already? Oh, no,

Jules 37:15
he definitely didn't know I think. I don't think he even fully realized, like how much his anxiety affected him until, until like, he had this kind of like crisis. One thing that I think is kind of funny is I think, I mean, I'm autistic. And I think, like, you know, the whole autism is genetic thing. I think my dad is likely autistic too. And I think that's kind of like played into his experience in a way that he doesn't recognize or at least doesn't recognize yet.

Scott Benner 37:43
Right? Is that, is that a diagnosis for you? When did you learn that? Um,

Jules 37:47
so actually self diagnose. And I think I realized when I was maybe like, right around the time I actually first got diagnosed with bipolar is when I started to be like, Oh, maybe this is a possibility instead of bipolar.

Scott Benner 37:59
So what are the what are symptoms or ideas that led you to that?

Jules 38:04
First of all, like the medication inducing All of this made me really be like, I don't think this is like a genuine bipolar diagnosis. And when I look back on that experience, a lot of a lot of just like what I was experiencing kind of lines up a lot with autism in the way that like, I was really overstimulated when I was in the hospital. And that was like, causing a lot of distress. Right, like the bright lights, the like constant noise, I think about also like communication. And I mean, I think that's another thing that kind of goes when you're not sleeping very much, is that it's really hard to kind of like form coherent thoughts. But I think also, like, I struggle with communication, just like in my day to day life, and I think, like having that kind of crisis, like really just highlighted it, versus like creating a problem that wasn't already there, if that makes sense.

Scott Benner 38:54
Yeah. Do you have an example of struggling to communicate with people? Yeah, I mean,

Jules 38:58
things like, I don't really understand idioms very well. And I think just also, there's a lot of like, a kind of nonverbal communication that goes on that I'm not always able to pick up on.

Scott Benner 39:14
Do is sarcasm to sarcasm miss you too.

Jules 39:19
Typically, I actually do understand sarcasm or

Scott Benner 39:23
idiom, like that's interesting. That's a that's a that's a big so if you I just literally Googled examples, so I wouldn't have to come up with them. But like if I said, You hit the nail on the head, you don't that doesn't make sense to you. That one

Jules 39:38
I know. That's the thing is like a lot of them. I've heard so many times that I'm like, Okay, now I get it. But if it's the first time I'm hearing it like yeah, I probably wouldn't understand. You can't you can't put it together. Yeah, that's right. Like that doesn't make intuitive sense to me. Like what do you mean I'm not using a hammer?

Scott Benner 39:57
hit a nail on the head. You hit the nail on the head. You know, yours is not the first conversation I've had with somebody who's got a bipolar, like diagnosis, or even is struggling in this way, even if that's not your diagnosis. And it's, um, it's really an interesting conversation from my perspective, because you are either like you're experiencing life, unlike what the norm tells us, it's supposed to be like, like, like, like, so how the, I guess the average person experiences it. But does that make it wrong? Or in need of being fixed? Or is this just your experience, and you need to get through it? No differently than anybody else? Like, do you are you going to need somebody to come make sure you eat a sandwich every once in a while in your life, not unlike there are plenty of people listening to this right now, who can't make it out the front door of their house without 16 ounces of coffee in their hand. And, and they they think they're living a normal existence, but they don't sleep enough, their body doesn't have enough, you know, vitamins, nutrients, like they're not taking care of themselves in such a way that they have to like, give themselves caffeine to get up and move. Right. And we don't think of that as an issue. Like, no one, no one says, look at all those people going into Starbucks, while they're really living an unbalanced life. And, and so is the difference, self harm. Because people who don't get coffee aren't going to, like do something that is so socially outside the norm, that it ends in the harm of them or another person, like do you think that's the line.

Jules 41:48
So what I how I kind of conceptualize it is that psychiatry is kind of based around work in school. Like, if you look in the DSM, for every, like disorder to be diagnosed, there's like the little caveat that these symptoms are like causing impairment in your like, work or school life. So a person who's like relying on coffee and not getting enough sleep, like if they're still showing up to work on time, and they're still doing their work, like they probably won't be diagnosed with anything. It's really like when it gets to the level of like, you're not able to, like perform your little capitalistic duties that you get diagnosed with something. Yeah.

Scott Benner 42:26
Yeah, I It's interesting. I, I don't probably fit your vibe. But that is kind of what I see is that, like, the society has a stream, right? That just flows. And as a collective, we don't want people interrupting that stream. And if they do, then we move them off to the sides. And, and by the way, I don't know that that's not needed to keep us society moving. But it's the it doesn't make it right or fair to the person who gets slid off to the side because of it. Like one does it hurt? Like the life you've described? Obviously, I think, first of all, let me make sure I understand, not what you would choose if you had the choice, right. Like you just you probably prefer to just get up in the morning, go to work, do something you like come home, hug your wife paint the walls, like that kind of stuff. But so it's not it's not a life you would choose. But since it's it's given to you, and you have no ability to say no, thank you. I don't want this. You don't want to be marginalized. You still want to live your life. Is that am I about getting all that?

Jules 43:36
Yeah, I mean, I think one thing I've like heard a lot of the yogic survivors talk about is that the DSM and like just like yogic diagnosis in general, is like meant to be destigmatize, right to be like, oh, a lot of people literally say like, oh, you know, my depression is just like, diabetes, where it's like this physical thing that's going on, I take medication for it. You know, it's my, like, then I feel better like that narrative. Yeah. But I actually like I've experienced a lot of like, negative consequences just because of my diagnosis. One thing that actually happened is that after so I was in college when I went to the hospital for the first time, and I wasn't allowed to come back. I was allowed to finish my classes, but they were basically were like, you're a danger to yourself, and you can't live in your dorm anymore. And so like things like that are like, I don't think it's necessarily bad to like treat a mental illness because like, if you're suffering, I think you deserve help. But I think like, diagnoses can be so stigmatizing and like effect, like, have you ever heard about how, you know someone with a bipolar diagnosis might not be top on the list to get like a liver transplant, or things like that? Because they're seen as like you're responsible or like will make bad choices that will like impact. Oh, you know, their success? Yeah,

Scott Benner 44:55
I didn't know that. But I, as you're saying it, it stands to Isn't that that would be the thought process on that side? And then can you tell me they wouldn't let you come back to school. They said you were a risk to be a harm to yourself plan. I mean, I unfairly, like know a little bit about your story more than we've said so far. So why would they think that? So

Jules 45:20
one thing that happened is I actually met with a psychopath, like, there's like a school psychiatrist, who basically decided this. And she saw me when I was in the hospital, so I was like, really, really doing poorly. And I think that's kind of like what She based her decision on. But that's the thing too, is that they never communicated this to me. They never said like, this is exactly why we're doing this. They were just kind of like, this was her decision. And she's the doctor. So we will listen to her. Yeah.

Scott Benner 45:48
Did you? Have you ever tried to hurt yourself? No, no. Have you had ideation? Oh, yeah, absolutely. Okay. Is that is that fairly common for you? Back then now? We're where? So I

Jules 46:01
mean, back then. No, it wasn't really something I was experiencing. I think I like kind of alluded to this when I was talking about how hard it was to take care of my diabetes when I really wasn't sleeping. And that's the point where I was like, I was really scared. I was gonna, like, accidentally overdose myself on insulin. And I was like, You know what, I would rather just like, take my own life. So I don't have to worry about that anymore. You know, like, if it's gonna happen by accident, I'd rather like do it on purpose. But no, at the time, I wasn't really experiencing anything like that. It didn't have to do with like, why I was hospitalized or anything? Yeah.

Scott Benner 46:36
Did you ever have a plan? Yeah. You had a plan? Okay. You knew the method, the whole the whole thing? Yeah. Okay. Did that go into anyone's decision about where they wanted you to be? So

Jules 46:52
I mean, while I was with my wife, they weren't super concerned about that. Because they were like, you know, I can keep you safe in our home. And I'll just, like, be there with you. But I was really scared. And I was like, I actually, that's why I like took myself to the hospital the second time in July 2021. Yeah, I was like, I am really scared. I'm gonna do something.

Scott Benner 47:13
Yeah. Do you have enough perspective to see why someone not experiencing what you're experiencing? Wouldn't want that around them?

Jules 47:25
I mean, I think so. I think it just kind of goes along with like, kind of the diagnoses that I like bipolar is a really stigmatized diagnosis like, and I think like, I think there's just like a normative expectation of like how you're supposed to be. And I think like, probably like, schizophrenic people experience this, to some extent to you, maybe even more so than someone with a bipolar diagnosis, but like, you know what I mean, like, I was acting like, not myself, like, I was like, saying wacky things and like, things that didn't make sense to other people. Yeah. And so I do, like, see, and I understand why. But I think I'd also just goes back to like, I don't think that being non normative is bad, right? I think it just is. No,

Scott Benner 48:08
I don't I agree with you. I'm trying to figure out when does it feel to someone else, like, I don't know, like, what's like a bombastic example, I can use, Oh, I like to my house kind of quiet. If I walked downstairs, and there was a rave in the living room, I'd be like, I need you all to leave. Like, like, this is not a thing I want around me. And if they said, Well, this is who I am, I'd be like, go be used somewhere else. And, and so it's, it's just such a, I can, what I want to say is that I completely understand as best I can, your perspective, and why your life should be yours. And you should live it the way that it's getting live, like. Like the way I'm living, is as much to do with how the chemicals in my brain are, are dialed up as your situation is, right. Like I can't like take credit for the fact that I don't have the issues you have, right, just as just as you can't take blame for yours. Like it's not on, it's not on purpose. It's not it's a thing that happened. And, and so everyone's deserving of their of their peace of mind and to live their life the way you know, the way that they want to or that they have to I guess it's just such a difficult issue. I don't know. And I was wondering how much of that like you can I don't know what the right word is like, like, how much of that you can appreciate and how much of that is lost because it's your situation. Does that make sense?

Jules 49:55
I don't know if I understand.

Scott Benner 49:59
I don't I'm trying to like find a way to like make the example but not. But I don't want to like my examples, not apples to apples, obviously, if I'm walking down the street, and a homeless man is talking to himself and running after me, that is, that's his body's living the way it's tuned. And it's not it's very likely not his fault that he's like that. I still don't want to deal with it. Like, I fully understand. Yeah. And but yeah. But, but as the society is, as a, as a thoughtful society, we should be dealing with it, we should be trying to help. But then what happens if the help that we can think to give is not the help he wants? Because that, that feels like your situation? Like, there's a world that you live in, and a world that's built to help people with your with your I don't know, your situation, right? And you don't like the way the world's decided to help you? And I don't know what the answer is beyond someone in your situation, being the person who offers the help, but then how the hell does that happen? Chills? Like, because isn't it possible that you won't be able to fulfill that responsibility? If you were to set something like that up? Do you see what I'm saying? I don't know. Like, it's so I'm flummoxed by, it almost feels like we're living on two different planes of existence. But But ya know, together. I hope all that made sense. Like I, yeah.

Jules 51:41
Yeah. And I mean, I think my response to that is kind of like, I think, just like the mental health system is so narrow, right? Like, there's like kind of one path for you to take if you're diagnosed with a mental illness. And like, to some extent, you have agency of whether you take medication or not, not typically like in an inpatient setting, but people with like, less severe conditions like don't necessarily, aren't necessarily like forced to take medication. But when I think about the example you gave of the homeless person, one thing I think about is like, how many of their problems would go away? If they just had a house? Like, would they be experiencing their mental health issues to that extent, like if they were just not living in such a stressful situation? And like, maybe, instead of automatically taking them to a hospital? Like, what if? What if we gave them a house, and I think there's a lot of things that kind of like fall under that umbrella? Like things like food insecurity can really affect your mental health, things like poverty? Yeah, even just like kind of living under chronic stress, a lot of us, like most of us are expected to work like way beyond our capacity that our bodies are able to work. And that can lead to all sorts of things. And like, it makes a lot of sense that you would be distressed, like under that circumstance. And so I think, like, the way I conceptualize it is like, I think there's so many ways that we could help mental health that aren't like the psychiatric system. Yeah, we just don't do it. Yeah. And the systems aren't in place.

Scott Benner 53:16
And you think that that doesn't happen, because in a, in a society that's built like ours, it's it's structured around you succeed. You get things you don't succeed, you don't you don't have things like i Listen, I'll tell you, I don't take a lot of time off. I definitely don't take as much time off as I should. But last week, for about 11 days, my wife and I just we, we left the house, like we just went off and visit our kids and you know, did that kind of stuff. So I wasn't working for me think I left on a Friday morning, drove all day, expense Saturday, through Saturday with my children. And then on Sunday, drove all day came home. But I didn't give myself off Monday, excuse me, I got up. I got up in the morning, and I went back to work, and I'm tired now. And I, I must have worked three weeks worth of my work to go away for 11 days. And then the stuff I couldn't get done before I left I pushed into this week. And I just got done telling somebody I have to get through this week so that I can maybe recenter myself for Monday. I have so many different support systems around me that even though I'm making a ton of bad decisions for myself about my sleep, and my workload, and my anxiety and you know, everything that goes on in my head, I'm going to get through it because I was because I was able to build structures around me to hold me up. And I was able to do that because my parents were able to raise me in a situation where that was possible to put me into a situation to better my life and all you need is one thing to You go wrong. And you not to be able to build those structures for yourself the way the society allows you to build them. And then it's just a spiral after that I imagine. Does that make sense? Like, I'm trying to put myself in that position, a position that I'm obviously not in. But I could be. If I didn't have a place to live, if I didn't have money, if I didn't have, you know, health insurance, I'd always be worrying about the most basic things. And with with no way out of them, I see what you're saying. I think I think I'm following you. Yeah. Wow. So what makes you want to come on the podcast, then?

Jules 55:44
I just wanted to tell you about like my diagnosis story, and kind of like how diabetes has like, played into all of these things. I think like, we often don't talk about, like the intersection of diabetes and mental health.

Scott Benner 55:57
Yes, so diabetes is difficult. on your best day. Right? So once you're dealing with all these other things, somethings that are skewing your ability to sleep or eat or focus. Does your wife help you with that? When it gets difficult? Or are you just struggling?

Jules 56:17
I think to some extent, they do help. But it's kind of like I have a lot of trouble, like letting them help. And I think it's also like, diabetes is a 24 hour kind of thing. Like if I wake up at two in the morning, and I have a low blood sugar like I like most likely, I'll be like the one gonna grab the juice box from the fridge. And like there, me, you know, my wife works. And so I can't necessarily like have them there. 24/7. So I think to some extent, like it is like I have to kind of carry a lot of it by myself, regardless of if I do get some help for it.

Scott Benner 56:53
Yeah. Well, is there anything that helps like, like structuring your day? certain ways, or? I mean, you said you're not working at the moment. So, I mean, obviously, I think you have more time, and that probably is valuable. But what do you have in place to help yourself?

Jules 57:11
I mean, I think like the diabetes Tech has helped quite a bit. Yeah, I actually, I'm not using a pump right now. But I was for a while. And I think like, having things kind of automated, just like helps with a mental burden link quite a bit.

Scott Benner 57:27
Can I ask you, I want to make sure I'm not doing the wrong thing. You've referred to your wife as your wife first, but then I just got they and them in a sentence. So am I doing okay, for you? Like, I'm not miss speaking?

Jules 57:40
I don't think you've messed under them. They do use they them pronouns. Even though they're my wife.

Scott Benner 57:45
I did not know that. So I've just like just now I went in reverse. And I was like, Did I mess this up? Okay, good. So you can't count on the person with consistency. It does need to be on you. Are you having the outcomes that you desire with your diabetes? Yeah, for sure. Well, that's cool. Do you have a CGM? Yes, so CGM, sometimes a pump MDI right now? And do you follow any kind of an eating structure?

Jules 58:21
I mean, I try not to restrict my eating because like, this is like part of my autism is that it's really hard for me to eat food sometimes. Just because of like, texture can be really overstimulating. So you know, I do my best to kind of just, like, keep myself on a schedule, and like, eat around the same time. But I don't like restrict, like, what foods I eat, if that makes sense. Yeah,

Scott Benner 58:43
describe that to me, you put a food in your mouth that has a texture, you don't like what happens next?

Jules 58:48
Oh, I just like can't eat it. Like the whole meal, it's just not going to go in my body. You

Scott Benner 58:56
can't just push that thing aside and continue on your way off? I say, yeah. Do you think of yourself as? How do you work? How do you think of yourself? Like when you if I said to you, if we just bumped into each other on the street? They were speed dating or something like that? And, and I said, Tell me about yourself? What would you say? I

Jules 59:19
mean, I think like, probably something similar to how I introduced myself at the beginning. I don't like to introduce myself in terms of like, professional kind of stuff. And I feel like I usually hold on to kind of like mental health diagnoses until like later on when I meet someone because I just always worry about, like, the perception of that and what that looks like.

Scott Benner 59:41
Do you do you have a friend structure around you? Like do you have a bunch of friends? Yeah, do how do you think they would describe you? That's

Jules 59:52
interesting. I guess like one thing I think about a lot is that my friends and I really enjoy astrology. So I'm in Aquarius and kind of like that. That's how I like get described a lot. I think it's like a lot of my traits are very like classic like typical, like Aquarius. So I think probably what my friends would say is like, I'm, I'm like an intelligent person I like, like to have kind of like stimulating conversations. You know, I like to read books. I like to just, I'm a very, like, playful and like silly person. And I'm like, compassionate.

Scott Benner 1:00:25
What kind of books do you read?

Jules 1:00:27
Right now? I, I've actually been reading a bunch of stuff about psychiatry. And then also, I'm reading like some fiction. I'm reading this, like, why a book that I read when I was a kid. And I've been reading a lot of Shirley Jackson.

Scott Benner 1:00:43
You like you like to escape when you're reading? Yeah. Okay, hold on. I had another thought. I was wrapped around your friends. What do you guys, when you get together? Like when your friend group gets together? What do you do?

Jules 1:00:59
I feel like we get together around like small parties a lot. Like we'll just kind of like have, like, my friend had a birthday party for their dog last year. And we had like a little Super Bowl party. I also play d&d. So that's one thing we do. And I like to just like the outside. Yeah, like go to the park, go hiking things like that.

Scott Benner 1:01:19
You called yourself. Do you say you were compassionate, empathetic? How did you describe yourself? Just? Yeah, I said compassionate, passionate, does that lead to you doing things for others? Or does it lead you to feeling bad about the things you're not doing?

Jules 1:01:39
No, it definitely leads me to do things for others. They definitely small things like, my friend got top surgery, and I like drove them to their like, you know, pre op appointment and things like that.

Scott Benner 1:01:48
Like you said, just you'll help when you can? Yeah, yeah, sure. And you see other people's struggles? Are you empathetic, like overly or to a level that you're comfortable with? Definitely, to a level I'm comfortable. I was around something the other day, where someone was just putting everything on themselves. You're like, oh, I need to know this. Because I have to. And I was and I was like, I'm thinking like, that's none of that's true. Like you, you're not, like, no one's expecting you to do this, you know, and gets the thing they put on themselves. So it's a, there's a healthy line in there between caring for people, and making it making you feel like you're failing constantly. So that's why I asked is just kind of fresh in my head. It's interesting. I mean, so you said you haven't had an episode in a while? How long has it been?

Jules 1:02:40
Well, I haven't had like a manic episode since 2021. And I mean, I kind of struggle with just like, I don't even know if at this point, I would call it depression. I think like, I write like, right now I'm feeling a lot of just like grief and rage. And those are like my primary emotions, but I don't necessarily think that's like anything, like clinical, you know,

Scott Benner 1:03:03
how does it How does it manifest start with grief? Like, what do you mean, you feel a lot of grief.

Jules 1:03:09
I mean, I feel a lot of just I think this kind of goes back to being an Aquarius, I feel a lot of like grief or like the collective of like, you know, all the people who die because they don't have health care because of COVID Or like, how the Earth is being polluted. And I think I kind of grieve like the lives that we could have if we lived under like, a different, even if we lived like in a different time period. Like all the things that would be different in our life, and all the ways that we could like access joy and like, access community and things like that. When I think Oh, go ahead,

Scott Benner 1:03:44
I'm sorry. If you have something to say go ahead. I can hold my thought.

Jules 1:03:47
Yeah, I mean, I think it just kind of shows up as like being sad a lot.

Scott Benner 1:03:51
Okay. When you think of living in another time period, do you go backwards or forwards? Usually forwards. Okay. So the the idea of the idea that it these things? Will we'll have more clarity as a species, hopefully in the future. And that yeah, kind of born in a time. Do you ever think? Well, at least I wasn't born at a time when? I don't know. But you know, 100 years ago? Why? I mean, honestly, just just with your mental health struggles. 5060 years ago, someone would have loaded you up on a drug thrown you in a room, you never want to come out again.

Jules 1:04:25
Right, exactly. I'm very grateful. I did not live in that time. Right. And

Scott Benner 1:04:30
that's not that long ago.

Jules 1:04:32
I know. Yeah. Right. Like I would have gotten a lobotomy if I was born in like 1920 or something, you know, very

Scott Benner 1:04:40
possible. Like you know, joking. Very possibly. My kid one of my kids asked me one time like, why is why does it feel like homelessness is is expanding? And I said, dude, 60 years ago, anybody who showed any mental health but it just got thrown into a facility you never would have seen them again. Their family like families used to drop people off. Like Like almost with the like, Well, this one didn't work out here you go in like like that, that kind of thing. And, and so when you think about the future you're hoping almost like in a Star Trek way that things are our maybe we find our way better and what? How nice would that be if everybody can kind of live like that? Yeah, yeah. So does you Do you not feel any? So the way I think about that is that I look back at progress, like when I hear people think, say things like things are so bad right now I'm like, well, Ganga scones not chasing us around the continent. So it's actually not going so bad at all, you know? Or, you know, even people talk about like, like social things from the time and I'm like, 50 years ago, this was way worse, like, we are absolutely moving forward. And it's just not fast enough for my life. Like, it's not going to, it's, it's not gonna, it's not gonna hit me, like, I'm not gonna get the benefit from this, like, that I understand a sadness about do you feel that way? Like, stuffs gonna get better? And I'm not going to be here for it? Oh,

Jules 1:06:13
yeah, for sure. I mean, I think like, kind of what we're all living through right now is like, we're just all living through a crisis. And I think there's going to be a time after the crisis when like, we can kind of, you know, repair as a society. But I think we're not at that point. And I don't know if we'll be at that point during my lifetime. Yeah.

Scott Benner 1:06:31
And so you can't let go of that. The idea that like, this, is it and I'm just going to ride the ride I was given? Yeah,

Jules 1:06:40
I mean, I don't know. I think grief is a healthy feeling, to some extent. Like, I think grief comes from love, right? Like, it wouldn't be a loss if we didn't, like love what we're losing. So I tried to think of it like that as like, it's unnecessary. And like, it's kind of like a hopeful feeling, too, I think, in a way. Yeah.

Scott Benner 1:06:59
Okay. So are you not able to just say, like, this is it like, there's this, like, society is under mankind is under a slow progression? This is the piece of it that we get? And like, because that's how I think of it, I think, like, how cool is it, that when I was your age, right, like, computers were just like, barely valuable in people's lives. Or that, you know, like, cell phones, like, I'm, I have this thing, you have a thing, right? It's got more computing power than the thing we sent the first space shuttle into space with, like, that's, that's crazy. And, and I'm getting to see all this. I have said this, Joseph, maybe you'll find this interesting. I once said to somebody, I would give away the last 10 years of my life, to come back for one year, every 100 years. Just just just like if I'm gonna die at 75, let me die at 65. But 100 years from then I get to come back for 12 months. And then 100. Like, I would love to see what happens. And I think that's an existential problem. Like, like, that's just the, that's hard to regulate, like, and if I guess if you're, I guess if you're having difficulties already, like, do those thoughts become intrusive, and you can't get rid of them? What happens there for you? Well, I

Jules 1:08:28
guess that's a really cool idea. I thought I would love to come back for a year. 100 years from now, no, but what I think about a lot as I think, like, in 2021, I was experiencing this a lot. It's really hard to kind of conceptualize, like, all of the ways that oppression, it's hard to like sit with all the ways that oppression has affected me and not like, like, not lose myself in it. Because I think a lot about like, I'm a disabled adult, and that affects like, every aspect of my life and right like being a diabetic. I'm about to turn 26 There's, like always that fear of like, what will my health insurance look like in a year? And I kind of forgot where I was going with this. Actually,

Scott Benner 1:09:14
let me let me say this and see if it comes back to you. I think that we are not capable yet. Humans of taking in as much information as is currently available to us. And you're trying to process more than your brain was meant to do. Like you are not supposed to know what's happening to the people in Sub Saharan Africa right now. You're not supposed to know about that. That's the thing happening to them. They're in an ecosystem. That's almost all of themselves. We invent travel. Right? So now you can go to places and see what's happening somewhere else. Okay, fair enough. But that's still linear, right? You have to go there. Stay there be involved in it, you either decide to stay and now you're a part of it or you decide to leave and it's gone. Again, you don't know about it anymore. But now, we know. In the course of any day, you know about every lawsuit, every company that's done something wrong, you know about every person who was shot today, you know about every, you know, the homeless statistics, you know, the statistics about fentanyl. You know that there's a cartel here doing this, and you know, that they're, you know, there's homelessness here and you hear about oh, in California, there's encampments. And God, that's terrible, all those homeless people. You're not meant to figure those things out. And but now you're trying to, and that, that's overwhelming.

Jules 1:10:45
It absolutely is. Yeah, yeah. And I think like, really, the crux of it is that, like you know about all these things, but you don't have the power to make it better.

Scott Benner 1:10:53
Well, you have two options, right, you can either dead, or you can either pick a thing and dedicate your life to trying to help it which you which, which, I don't know if that would take away your concerns about everything else. Or you do what what adults end up doing, which is just saying, like, I have no agency over that. It's not a thing I can concern myself with. And, and, and say, I'll tell you how I make myself right with it. The planet has been here for much longer than we know. And we're all here. So basically, if I do nothing, everything's still gonna be okay. And what is okay, okay, is whatever's going to happen, because we don't have that much sway over it to begin with. You take things like, like, like, there's one person who might tell you like, oh, slavery, that's over. But then another person might say to you, Well, no, they're slavery all over the world. Still, that's true. I that's terrible. There are girls and boys right now who are imprisoned in places to sex slaves. That's a real thing that happens in 2020 30. You and I can't do anything about that. Like, are you could you could go find a foundation who works on that and put your, put your acid to it, and just put all your effort into it and try to help it. But and you you should. But if you want to, but you have to let go of the idea that you can impact all of these things. And that, because I mean, that I mean, I was just gonna be political and say like, it'll make you crazy. Right. Right. Like, like, if you really look at all the things that are wrong. It if you can't say to yourself, time will eventually smooth this out. Or it won't. But I hope it does. You know, and I'm going to just, I don't want to say something stupid, but like think globally, act locally, right? Like, I'm going to live the best life I can. And that's how I think of it like, I'm going to do what I think is right. And I hope that that has a ripple. And hopefully that ripple will impact people. And it can do it personally. Like it's impacted my children. And hopefully they'll do that, you know, so now maybe it'll be more like skipping stones, and my ripple will create another ripple, and maybe it'll reach farther. But I don't know, like, you're, you're a lovely person. And I hate to think of you out there trying to figure out space travel and homelessness. Because those are, those are big ideas. You know, I don't know like is, do you know that intellectually?

Jules 1:13:32
Yeah, absolutely. Yeah, I think that's something like as I've kind of, like, I don't want to say grown up, I don't feel grown up. But as I've like, transitioned to my 20s, I think that's something I've been kind of reconciling with is like, I really like I, I can't fix it all as much as I want to you. i It honestly, like, it feels like I can't even do that much at all. Because a lot of like mutual aid work that goes on around me is like, requires you to either like donate money or to like donate labor. And I don't really have like either of those to be able to donate. And so I think like, that's something I've been kind of reconciling with too, is that like, there are ways I can make an impact. And I think like the way that I kind of think about that is just kind of like, affirming the value of every human life feels like the biggest impact that I can have. I've just been like, treating everyone as if they're so important, because they are and like doing what I can to kind of like support the people who are in my life. Right? Even if that's just giving them a ride to the doctor, you know, your art.

Scott Benner 1:14:34
And you're in the city, right? You're in Philly? Yeah, I mean, you could, you could volunteer at a shelter. You could you could ladle soup, you could do a lot of things that would actually physically help somebody in that moment. And maybe that would make maybe that would make you feel better, you know, like to be physically doing something. There's this thing that that listen, there's two things here I want to talk So when I was younger, I was idealistic, like anybody else. And you'd look at older people and you say, Oh, they don't care, they care about their money, and they care about their retirement. They're not thinking about the world anymore. But but as I gotten older, I thought, well, that is true for some people. But there are other people who have just seen the writing on the wall, so many times that they're like, I'm gonna stop banging my head into this wall, like, this is how this goes, I don't seem to have any impact on this. And it's not that they don't care about it, they let it go. My wife and I always said that a good measure of ourselves will be as we become more successful as we get older, do we stick to the values that we had when we were younger? And we've we've done that, but my perspective is different. You know, being like, big, there's a moment in our conversation where you said, like, you know, if homeless people just had a home, like, and I thought, yeah, that makes total sense. I talked about having structure around you and everything. But you know, there are plenty of people are going to hear that and go, Hey, if you want a house, get a job and buy it. And like and so when those are those, like those two kinds of feelings, the middle is the utopia, like drawing everybody into the middle, so everybody can see everybody side is how you end up at Star Trek. It Right. And, you know, I, I've used this example before, but somebody I know, like kind of periphery. We're talking about the hurricanes that now happened, like 15 years ago in in New Orleans. And this person said to me, Well, why didn't they leave? And I responded, and I said, Can you imagine for the want of a car not being able to save your own life? Or, or $50 to get on a bus and just say, hey, go go that way. You know, I was, like I said, some of those people are in such a state, they couldn't even afford or conceive of how to save their own life. Like for an amount of money, you might go to a restaurant, and blow tonight on a meal for a couple of people, they could have got away. And instead you're watching them standing on the roof hoping for a helicopter come to them and your responses. Why didn't they leave? Like that? That's productive, you know? And, but I get what he's saying, like, and because then as I made that point to him, and he said, Well, yeah, man, but I went to high school and I paid attention, I went to college, and I paid attention. And I got a job that didn't pay anything. And I worked hard at it, and I moved up. And I'm like, I see where he's coming from. And but I responded with, some of these people are involved in what would be generational poverty. Like they don't, they have no pathway, there's no light in front of them, they don't know where to go, you know, their expectations are so low, I think that they, they can't even conceive of how to get out of this. And you have now a decision to make, you could you could see their situation. And even if it's honest, not be so harsh, or you could choose to be more generous with your interpretation of their situation, and help them you know, but but tools I want to, but what I wanted to tell you is that social media has, here's, here's your perspective, for the reason I told you the first story, so I can tell you this, right, like, I have a different perspective than I did when I was young. And one of the perspectives I have is of people your age and younger, who think that putting something on Instagram is advocacy, or that they're changing the world with a picture or by putting up a quote or something like that, that they're going to they're going to create this ripple, you know, five likes at a time. And, and I'm going to tell you that it'll make you feel good. And you will be signaling to the world that you think in a generous way about this. I don't know how much it helps anything. Because in the end, the people with the money still make the decisions. That makes sense, Jules what I'm saying?

Jules 1:19:05
Yes, yeah, that's something I like think about sometimes, too. Yeah, cuz I mean, sometimes I think it's like a performance almost.

Scott Benner 1:19:14
Oh, yeah. Yeah, it's virtue signaling. They're just like, look, I think I think the right thing, I'm okay. You know, and, and it's funny because I'm a person. I think you would think if you and I sat down privately and talked about a ton of different social issues could be like, Hey, I think Scott's on the right side of a lot of this stuff. I don't spend any time telling people how I feel about it. I just do it. You know, like, I made this podcast to help people and it and it does, and great. I don't spend a lot of time telling people that I made a podcast that help people I just keep making the podcast. And that's why I wondered for you, if actually walking out side and do winging a thing doesn't really matter what it is. Like if you wouldn't feel more grounded to reality that way, like, like, step away from your phone kind of an idea. Yeah. Yeah. Because you're already a person in your situation, right? Like, go back over it, you describe being depressed as a kid, you get these headaches, it turns into bipolar, you've got you're not sure that that's your actual diagnosis, you think you you have some autism leanings, and you get type one diabetes, that's a lot of shit that happened to a person, right? And then on top of that, all of your input is telling you that the world is not right. And you have to fix it, and you have no pathway to fix it. I wouldn't want to live like that. That would that would be that would be painful. You know, I don't know if that's helpful or not. But it's just, those are the things I wanted to tell you. So yeah,

Jules 1:20:56
yeah. Yeah. And I mean, I think like what I've been working on in the last few months is really focusing in on like, what do I have agency to do as a person? Yeah. Yeah. Like, this might sound silly, but I want to plant flowers this year. And that, like feels like a way that I can like, make the world a little bit better, to

Scott Benner 1:21:13
great idea, that absolutely terrific idea. And put yourself in charge of being responsible for them. I find, I find that, that caring for something that has no real need, meaning it can't, it can't tell me like you screwed up. But I still treat it but I still treat it like it's the most important thing in the world. I think that's helpful. I also think, I don't know if this is connected or not. But people I keep cactuses. Not a lot of them. I have a few of them. And I've had people tell me like the other bland like, there's no flowers, and they grow so slow. And I said yeah, I think cactus is teach me patience. And the explanation to that is, they grow so slow, and they need so little from you. But you're still responsible for it. And, and you learn to look at that thing once a year and say to yourself, oh my god, it grew a half an inch. And that, and that feels like a real accomplishment. Like, I can't, I don't I mean, I kept this thing alive long enough, and it grew a half an inch. And and most people would say, well, that sucks. Like, it's a half an inch, I want it to grow three feet, or I want it to be huge. I wanted. And I say no, I say that's what that thing wants. And that's what it needs. And I'm facilitating it. I don't know, I swear to you that having a cactus has made me a more patient person. Yeah, that makes a lot of sense. Yeah. Because I want to see I want to see it. Blossom. When it takes a lot of time. And that's okay. Yeah, and I think that's part of what has you flummoxed is that you want things you want it to be 300 years from now right now. And that's not going to happen. And you don't have a way of making that okay for yourself. Interesting. Yeah. Yeah. I'm sorry. You also said rage. That it was like a hammer was like a half an hour ago, Jules, but I know I'm keeping you longer than I said I would but I have like 15 more minutes if you do like what's rage feel like?

Jules 1:23:28
I actually wrote a poem about this recently. It feels like lava bubbling up inside of me. Like it feels so like visceral. But I think it kind of is the same. Kind of like origin of the grief. I think it's just like a different side of it. Of like, yeah, like I feel a lot of rage about like all the people who have power in the world who are like deciding to like harm other people.

Scott Benner 1:23:55
Just let it out.

Jules 1:23:58
No, not really, you

Scott Benner 1:24:00
should hit something not a person. Like Like, like a thing. Like Like, are you You didn't you haven't mentioned it yet. But do you have any like athletic leanings? I used

Jules 1:24:10
to it's just been really hard in the past like year or so. I haven't mentioned this yet, but but I had COVID in July last year since then. I've had like crazy fatigue.

Scott Benner 1:24:20
Yeah, I had it I had an October kick my ass for a while was not Yeah. Okay, so we'll talk about that in a second but let it out some out. I mean, yell into a pillow. Go for a walk. Like seriously like hit a heavy go to a gym you're in Philly, there's got to be a boxing gym somewhere go into a corner hit a bag for 15 minutes and leave like like some way to like, because that's one of those things where I don't know like how far down this rabbit hole we get. But you know, like you hear people talk about like, you know, it was it was big for a while to talk about toxic masculinity Right? Like how guys are like, but like, you know, I'm Guy and it needs to come out sometimes, you know what I mean? Like, sometimes you just have all this, like, testosterone and this feeling of responsibility. And this idea that you're supposed to be taking care of things and like all that stuff builds up. And then we like we live a lifestyle where nobody lets it out. And the more you're gonna be like, there's, you know, that's, I think that's why you hear people talk. So like, lovingly about hunting, and fishing and football and like the things where they can just go be an animal for a while, and it's, and it's a release, you know? And if you can, if you're constantly modulating yourself and telling yourself, these are not good feelings to have, I think then you're kind of denying, like, the physiology of yourself, like, right, like, this is how I feel like, I'm not a bad guy. I'm not going to go out and punch somebody in the face for no reason. But I do need this out of me. I think I think about it that way. Sometimes. I wonder if you couldn't find a way to let it out? Yeah, you know, yeah,

Jules 1:26:00
I'm sure there's a way

Scott Benner 1:26:02
Yeah, I mean, you got time figure it out, like try a thing. And if it doesn't work, try another thing. Get a dumbbell and do curls. Like in your apartment, you know, the mean, or wherever you live? Just like, like, put effort into something like I think sometimes just good, honest. Exercise is a good reliever for depression. And a lot of those feelings, too. I don't know. Yeah. lean into it instead of the internet. I mean, the opposite. Is there anything we haven't talked about that you wanted to? know? I don't think so. Did I do okay? Yeah. Yeah. How do you feel now? any different than when we began? Honestly, I

Jules 1:26:42
feel really hungry.

Scott Benner 1:26:45
I made you hungry. Just lunchtime. Is your blood sugar. Been Okay. During all this?

Jules 1:26:54
I haven't checked. Yeah, it's all good. Oh,

Scott Benner 1:26:57
cool. That's excellent. Do you get bloodwork done for like the normal stuff? Like do you look for thyroid issues? In your blood work? Do you? You know, do you know where your vitamin D level is? Like those sorts of like things?

Jules 1:27:11
Yeah, definitely. We track all of those things. Good. Good. Oh, that's great.

Scott Benner 1:27:16
I don't know I really very much enjoyed speaking to you. I hope you had a good time. Yeah,

Jules 1:27:21
thank you for taking the time to talk to me. Nice.

Scott Benner 1:27:23
was wonderful. Would you hold on a second? Yeah, thanks.

A huge thanks to Jules for coming on the show and sharing this amazing story with us. And I also want to thank ag one and remind you to drink ag one.com/juicebox. I said earlier, but if you are enjoying the after dark episodes, there are many more of them. You can find them at juicebox podcast.com, or the feature tab of the private Facebook group. As a matter of fact, I'm going to run another afterdark next week. Again, if you're enjoying the show, please subscribe or follow in the audio app you're listening in right now and turn on your automatic downloads so that you don't miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.