#1509 Terrified of Apples

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While pregnant, Tzipi fought to get her daughter on a pump and looping just two months after diagnosis. She shares how it shaped their early days with a newborn and life as caregivers.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Speaker 1 0:00
Here we are back together again, friends for another episode of The Juicebox Podcast.

Tzipi 0:15
I'm CP. I'm a mother of two kids. My older Haley, she's three and a half years old and she has type one diabetes. Please

Speaker 1 0:23
don't forget that nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. I know this is going to sound crazy, but blue circle health is a non profit that's offering a totally free virtual type one diabetes clinical care, education and support program for adults 18 and up. You heard me right, free. No strings attached, just free. Currently, if you live in Florida, Maine Vermont, New Hampshire, Ohio, Delaware, Missouri, Alabama, Mississippi, Iowa or Louisiana, you're eligible for blue circle health right now, but they are adding states quickly in 2025 so make sure to follow them at Blue circle health on social media and make yourself familiar with blue circle health.org. Blue circle health is free. It is without cost. There are no strings attached. I am not hiding anything from you. Blue circle health.org, you know why they had to buy an ad. No one believes it's free. Today's podcast is sponsored by the insulin pump that my daughter has been wearing since she was four years old. Omnipod, omnipod.com/juicebox, you too can have the same insulin pump that my daughter has been wearing every day for 16 years. Today's podcast is sponsored by us Med, US med.com/juice, box. You can get your diabetes supplies from the same place that we do, and I'm talking about Dexcom, libre, Omnipod, tandem and so much more us, med.com/juice box, or call 888-721-1514,

Tzipi 2:11
I'm TP. I'm from Calgary, Alberta in Canada. I'm a psychologist in my profession. I'm a mother of two kids. My older Haley, she's three and a half years old, and she has type one diabetes, and that's why I'm here today.

Speaker 1 2:25
Awesome. And now we're gonna do a little thing where you explain to me how to say your name. So do I just do I swallow the tea? Do I just say? ZP, oh,

Tzipi 2:33
that's a very common question. You just say, see, they use the tea like with pizza, like

Speaker 1 2:39
C, CP, I don't know. Wait, wait, hold on. CP, yeah, I got it. Perfect.

T.P. 2:45
Yeah, you

Speaker 1 2:46
got it Oh, slow. Let me just jot down phonetically what I just did. Do you need help with my name? I'm just kidding. I'm just that's pretty easy. So how many kids did you say you have two?

Tzipi 2:59
I have a newborn, like five months old, baby, oh my God, and three and a half years old. Okay, congratulations.

Speaker 1 3:05
Thank you. Thank you. That's lovely. So how long ago was your daughter diagnosed? So she was

Tzipi 3:12
diagnosed 10 months ago, when she was two and a half years old. Oh, gosh, and I was pregnant. Yes, 17 weeks pregnant. Yeah, that was fun.

Speaker 1 3:21
I was just about to say Arden was just two years old when she was diagnosed in the draw of parallel. But I was not pregnant at the time. So yes, that

Tzipi 3:29
definitely adds more layers of stress and interesting experiences, for sure.

Speaker 1 3:34
I think I'd like to hear about that a little bit. How far along were you? And then what happened that showed you that your daughter needed help. So

Tzipi 3:41
it actually, I think it started, like, few, few months prior to the diagnosis. I know I always noticed, like, always felt that something is a bit off. She was always irritated. We started to have tantrums when she was one year old. Already, she was very moody. She wasn't a calm baby. And few months prior to diagnosis, I noticed that she's not she's not really growing. I looked at her friends in day daycare, and everyone was growing and getting bigger, and she she wasn't. And I remember I asked her a doctor, like, what's going on? Why she's not getting any taller, any bigger? And the doctor was like, she's okay. She's not losing weight. Everything looks great, like all other aspects were great tantrums. He said, that's pretty normal, very normal toddlers behavior. And I said, okay, at the time, I didn't know a lot about type one diabetes. And then few months later, she started to drink a lot of water. She was also very attached to her bottle. She was she was two, so I said, Okay, maybe that's, that's normal. So she was drinking a lot, but then she started to pee a lot too, which, at the time, made sense, because I was like, okay, she's drinking lots of water. She's peeing a lot. That makes sense. Like some like this fluid need to go somewhere. But then she started to wear the bed as well, and it became more and more severe. But then my my husband and I thought that it's just, you know, maybe we need to in. Is the size of the diapers. So that's what we did, and it worked until it didn't. And then we changed again the diaper size, and it didn't work. So then I started to look up on Google to see what what can it be? Because it didn't, it didn't seem familiar at all. And she also became very obsessed with water. She was thirsty all the time. And now, when I think about it, I feel super bad that I didn't ring any Bell.

Speaker 1 5:23
How long did this go on for? Why do you feel bad? It lasted

Tzipi 5:26
for, I think maybe four months or so. I mean, it progressively went worse and worse. So it wasn't unusual in the beginning, because she was always attached to her bottle. As I said, she was always drinking a lot. I told the doctors all the time ask me, like, is she drinking water? And like, yes, she's drinking a lot. And they were like, great, that's so healthy. And I'm like, Yeah, great. So I didn't it took me time to realize that something is off, and when I Google all the symptoms, then I saw something about type one diabetes, and I was like, oh. And then I met with her doctor the next day, and her doctor was saying, Yeah, sounds it can be type one, although it's very rare in our age. It might be just like a normal toddlers behavior, like some weird Toler behavior, but you know what? Let's check, let's rule it out. And the next day, I took her for some blood work, and I will never forget it. It was Saturday, in the evening, our doctor called me. He's a very dedicated doctor, by the way, he's always checking the everything. So he called me right away, and he was like, Where is your daughter? Is she awake? And I'm like, yeah, why? And I'm looking back and I see my daughter in a huge meltdown, lying down on the floor, as usual when my husband was trying to put her to sleep. So it was evening, nothing unusual for us. We've been going through this for for a while with her. And then I asked him why, what's going on? And he told me her sugar was very, very high. Like, okay, how high? And he's telling me 29 which is, I think, 500 520 so again, reminding you, I didn't know a lot about type one diabetes, and I asked him, Okay, how high is it? And it's like, you know, the maximum is 10. If your child is sick, it might be 11, but that's very high. I'm pretty sure she has type one diabetes, and you need to go to the hospital right now. That can be very dangerous. She can get uncon unconscious, right? So my heart just fell at that moment, and my husband didn't hear this conversation. So I'm looking back at my husband my daughter, and I'm like, saying to my daughter, what do you think about going for a road trip? And she was, like, ecstatic. She was so happy. She was running and, you know, lying down the floor. Yeah. Road trip, road trip. And my husband is looking at me at no idea what's going on, and I just told him, We need to go to the hospital. Her doctor thinks she has type one diabetes. And my husband is like, No, I'm sure it's nothing. Let's go. Let's check. Let's see. I had a feeling that this is it like she she has type one diabetes. That

Speaker 1 7:58
sucks. Is it in the family at all? Like when the doctor first said it to you, did you think, Oh, that makes sense?

Tzipi 8:04
Or No. No. Later on, I found out that my husband, so his uncle, was diagnosed with type one diabetes, but when he was 20, and we didn't, I didn't know about it, my husband didn't, didn't really know much about it. So it was pretty it was out of the blue. Yeah,

Speaker 1 8:19
no, I'm sorry that sucks. So you get to the hospital, 522, it's a big number, yeah, how long? And she's little. I would imagine. What do you think she weighed at that point? Diabetes comes with a lot of things to remember, so it's nice when someone takes something off of your plate. Us, med has done that for us. When it's time for Arden supplies to be refreshed, we get an email rolls up and in your inbox says, Hi, Arden, this is your friendly reorder email from us. Med. You open up the email. It's a big button that says, Click here to reorder, and you're done. Finally, somebody taking away a responsibility instead of adding one us. Med has done that for us. An email arrives. We click on a link, and the next thing you know, your products are at the front door. That simple, us, med.com/juice, box, or call 888-721-1514, I never have to wonder if Arden has enough supplies. I click on one link, I open up a box, I put this stuff in the drawer, and we're done. Us. Med carries everything from insulin pumps and diabetes testing supplies to the latest CGM like the libre three and the Dexcom g7 they accept Medicare nationwide over 800 private insurers, and all you have to do to get started is call 888-721-1514. 888-721-1514, or go to my link, us, med.com/juice, box. Using that number or my link helps to support the production of the juice box podcast. Today's episode of the juice box podcast is sponsored by Omnipod. And before I tell you about Omnipod. Pod, the device I'd like to tell you about Omnipod, the company. I approached Omnipod in 2015 and asked them to buy an ad on a podcast that I hadn't even begun to make yet because the podcast didn't have any listeners. All I could promise them was that I was going to try to help people living with type one diabetes, and that was enough for Omnipod. They bought their first ad, and I used that money to support myself while I was growing the Juicebox Podcast. You might even say that Omnipod is the firm foundation of the Juicebox Podcast, and it's actually the firm foundation of how my daughter manages her type one diabetes every day. Omnipod.com/juicebox whether you want the Omnipod five or the Omnipod dash, using my link, let's Omnipod know what a good decision they made in 2015 and continue to make to this day. Omnipod is easy to use, easy to fill, easy to wear. And I know that because my daughter has been wearing one every day since she was four years old, and she will be 20 this year, there is not enough time in an ad for me to tell you everything that I know about Omnipod, but please take a look omnipod.com/juicebox I think Omnipod could be a good friend To you, just like it has been to my daughter and my family. I

Tzipi 11:25
think she was maybe 10 kilos something, yeah. So, you know, in the hospital, everyone was great, actually, very supportive. It was the I didn't know what is expected. On the way there, my daughter was so high and excited, and I told her, you know, we're going to this great hotel. I just developed this great story because I had no idea how to communicate it to her. I didn't know what to expect. So she was very excited. We went there the doctors, they were very quick. They poke her finger, which was to me, like shock the first time. Luckily, she wasn't in DKA. They said we found it on time. And they said we didn't, we don't need to stay denied there. And they were very supportive, very gentle. They said, You know, there can be other reasons why blood sugar is so high, but you know, it's high now, so maybe let's start with insulin. Let's start for now. Do you

Speaker 1 12:17
think they knew she had diabetes and they were trying to ease you into it? Yes, yes,

Tzipi 12:21
for sure, yeah, to I mean, to me, it was clear, like for my husband, that was very helpful, because it gave him some, some hope that maybe, although there can be other, like, worse things, I mean, that can explain why sugar is high, other than type one diabetes. But it helped my husband and but I knew, but it was, it was nice to hear, in a way, yeah,

Speaker 1 12:43
do you feel like your husband and you were on diverging paths at that point? Like, did you have a different experience than he did?

Tzipi 12:49
I think for him, both of us were shocked. I understood it quicker that you know that this is it. So I really tried not to have any like, false hopes or something. It was very clear to me that something is off. And it explained lots of things, actually. And when they gave her the insulin, we went back home, and it was one of the best and peaceful. It was the most peaceful night we have ever had. My daughter has ever had. She slept so well that night. We were having so many struggles with sleep, but when she got the insulin, she was all of a sudden, so calm. And that also gave me hope, personally, because I felt like, Okay, now we know what it is. Now we know how to address it. We have treatment great, so that was helpful to see how it is affecting her. Wow,

Speaker 1 13:36
you talk a little bit in your note to me about the emotional aspects of having a toddler with type one so I'm wondering what you've learned, what you've been through? Wow, that's that's quite a journey. So

Tzipi 13:49
you know, raising a toddler is hard enough, not to mention raising $1 with the type one diabetes. And I'm sure you know from your own experience, so it is hard. In the beginning, I had no idea how to communicate it to her, so I just try to use a language she knows she's familiar with. So right in the beginning, I told her that our sensor or her pump our super powers, and it may it keeps her safe and healthy, and this is how we know that she can get bigger and stronger, and it keeps her safe, basically. So I invented this story around superhero, super power she was very excited about. So every time, in the beginning, we were on MDI, now we have a pump. Luckily, we got it very fast. That's another, another story where I had to really advocate for her. We were on MDI, so I made sure to create this very positive routine around diabetes, around injection, just to make it more fun and not so different. So when she was born, I was very firm against limiting, not allowing screen time at all. But back then, I needed something to distract her. I told her that this is our dedicated time to watch some songs that she likes. I used to go every, almost every day the first six months, to the store to buy some surprises for her, some craft, some painting. And she used to get after every injection, some surprise. So she became so excited about it. We also used to like put stickers and decorator, sensor and pump, and I let her put also stickers on me. In fact, we're still doing that, so she will feel like it's something fun she's doing with her mom, and she's no different than anyone else. So that helped a

Speaker 1 15:32
lot. Is that something you've kept up, or has that sort of died down? No.

Tzipi 15:36
So we're still doing it. And actually, this superhero story is working really great. I know that, you know, it's time limited for now. She's She really likes it. I used to collect pictures of kids their age with pumps and sensors and stickers, and I used to tell this story that they are superheroes, and this is her power. And I actually have a very funny story about one time we're at the pool, and she saw a bigger kid with the with the sensor, and she was like screaming in front of everyone, Hey, Mom, look another superhero. And that kid is just looking at her, and he's

Speaker 1 16:11
like, my mom didn't tell me that. Yeah. So, yeah, you know, seriously. CP, what a great idea, like just to change the narrative, yes, just make it what it is, and you decide what it is, yeah,

Tzipi 16:23
and, and I think it's true also when, for when, she will be bigger, because I know that coping with with any, any challenge in life, is really about what you how you see it, what you make out of it. And I really wanted, the day she was diagnosed, I decided that I want her to have the best possible life, and I'm going to make this experience as positive as I can, as normal as I can for her, so the stories will change. And I'm slowly, slowly telling her more and more about diabetes. Now she knows that it's insulin that I'm putting into the pump and trying to keep it age appropriate, of course, but I wanted her to realize that she's she's no different than other, and she and diabetes will never prevent her from doing anything she wants. How

Speaker 1 17:08
do you imagine the the stories will morph over time? Have you thought about it, like, what? What happens when she's like, Oh, I'm not a superhero. Like, what do you say then? Yeah,

Tzipi 17:18
that's, that's where I'm struggling to be honest. And you know, I was also reaching out to other parents and to the community, and we have, honestly, very great community in all of the Facebook groups, and I'm talking to so many people and just trying to understand what other people are doing. But I think you know, this superhero story for me is about her being brave, regardless of, you know, how I call it, or the or what it involves her being brave, overcoming difficulties. And that's that's true. It's not going to to disappear when she'll be bigger and the story will change. I really believe that she is brave. She's dealing with so many things that me in her age, I never had to deal with it. So I think this is what it's all about, basically her being brave and strong, regardless of challenges that life might bring with time, I will tell her more, and I actually I'm waiting for her to ask me more questions, because I don't want to bombard her with information she's not ready to yet as well. So I'm also waiting. No, I don't know when she will ask me, Why, mom, why am I beeping in school? So she's going also to school, and we're, we're looping, so we give her bosses remotely, and there is always this Beep, beep, beeping sound. Yes, I'm just waiting for her to ask more questions.

Speaker 1 18:35
I just realized you're basically, this is, this is Santa Claus. You're telling a story that's really fantastic. And then one day, someone's gonna wake up and go, Oh, hold on a second. Yeah, but I'm

Tzipi 18:45
hoping it will be gradual, so I don't I'm sure I'm not planning to just keep it like this until she's, she's 20, and she's like, Mom, what's going on? I'm not a superhero, but I haven't

Speaker 1 18:56
flown or crawled up a wall or anything yet. Like, when does any of that go? No, no, no, I can't listen. How old is she again, right now? No, she's three and a half. Yeah, I this is lovely, you know? Like it just, it really is to let her feel special and at the same time, not different. It's a tightrope act. And I think it sounds like you're

Tzipi 19:13
doing a good job with it, you know. Oh, thank you. Yeah, I'm really trying. You said

Speaker 1 19:18
earlier there was some stuff on the on your husband's side of the family, like, what else did you find after you dug in?

Tzipi 19:23
Nothing, really, nothing, really, mainly that, just that.

Speaker 1 19:26
Okay, all right, there's that hasn't been thyroid or celiac or anything else. No, no,

Tzipi 19:30
okay. But I'm very mindful of the the connections between other other autoimmune disease too, so we're always monitoring as well for other stuff, hoping they will not come okay.

Speaker 1 19:40
No, of course. How much of this approach do you think comes from your professional background? Do you think this would have been something you thought of without that?

Tzipi 19:50
That's a great question. I'm not sure, to be honest, because I feel like all the knowledge I have definitely helped. But you know what? I also feel that. And I was, you know, when Haley, my daughter, when she was born, I was so attached to her immediately. And the day she was born, I I swear that, you know, I'm always going to love her and be there for her regardless, no matter what. And when she was diagnosed, I felt like this need of me became stronger. And I just, I feel like, you know, I'm looking at her, and I feel like I own it to her, just to be I'm responsible for her happiness, and she's so young, she's just starting her life, and I just want her to have a great one. So I was always actively looking I was reading a lot. So I'm not sure if it's really my professional background or me just being very active in gaining more knowledge and hearing stories about other people, you know, experience, and I was all talking a lot with people with type one diabetes are adult now, but they were diagnosed when you when they were young, too, and they used they they're telling me great stories about the things that help them, yeah, the things that their parents were doing to help them cope better and feel special. So that helped a lot. So I'm all the time actively working to improve and to gain more more knowledge, just to help her better. Are you a more mature

Speaker 1 21:09
for the last 30 seconds, been trying to figure out how to ask you this, but you're a more mature mother, right? You're in your 30s, yeah, yeah, yeah, yeah. Because, I mean, like that feeling of, I don't know, it's something about the way you discussed your responsibility to her, just made me feel like you'd been around for an extra 10 years. That's all, oh, it felt like a very mature I guess what I'm saying is not that younger mothers aren't like, Hey, I know I'm here to take care of my kid, but the way you spoke about it just gave me a feeling of you being older. That's all, oh, okay, yeah, so, yeah, like you've been through something. Have you been through other things? Like, has life been challenging at other times? Or is this your first shot at this kind of thing?

Tzipi 21:50
Definitely. You know, in my personal life, I went through some things and some journeys, of course, which maybe, maybe stronger. But yeah, it might contribute to some of those approaches.

Speaker 1 22:04
Yeah, I feel like I hear them in your voice. That's all, oh, okay, so I don't, I don't want to ask you what they were, but it feels, it feels like there was very good. You're very good. Yeah. Sounds like you've been through some shit. Is what I'm saying. Yeah,

Tzipi 22:17
yeah. So diabetes is, yeah, almost nothing. No, I'm kidding, but

Speaker 1 22:22
no, no, of course. But yeah, almost problems do prepare you for more problems. They just yeah, you know. And

Tzipi 22:28
you know what? I think that coping with type one diabetes also made me definitely changed my perspective even now, because I want to believe that I'm a very rational person, I was always looking for explanations and answers, and I always, you know, looking for some predictability, and diabetes, really, that I feel like many times there is no logic, there are no explanation. And I was stuck for a while on the whys, why is it happening? Why I did everything correctly? I gave her the Bolus that I needed, and now she's spiking. Now she's going low, like, what's going on? What's happening? I was so stressed. And actually, you helped me a lot, because, listening to your podcast, I understand that there is no point on, you know, being stuck on the whys, because we just need to do it, to manage it, pretty much in a way that is detached from emotions. She's high now she needs more insulin, like, it's not going to help. Just think about why, the reason. Like, who knows why

Speaker 1 23:21
you can make yourself crazy trying to figure it out in the moment a lot of times, yeah, yeah. I was going to ask you, like, how did you get the looping so quickly? So

Tzipi 23:29
after she was diagnosed, I felt like I went on a mission to make sure she's get she's going to get the best possible care. So despite the shock, despite the sadness, all these negative emotions. I started researching a lot. I was talking to so many doctors and researchers all around the world. And then after two weeks in, it was very clear to me that she needs to be on a pump. And then I was reading about Lou, because in Canada, we don't have yet, the tubeless pump on a closed loop, basically so. And then I found out about loop, and I said, that's great, because I want her to be independent as much as possible. I want her to go to school. I want to be able to manage it all without ballerina teachers or anyone around her. So, and then I found out about it, and it was so great. So I was so excited, and I went, it brings me into another story. I went to her doctors two weeks in. I was like, Yeah, we're going to have a pump. And our doctors, even they were amazing, very supportive, very kind, but unfortunately, they were lacking of resources as well. So they told us, well, unfortunately, you will need to wait for six months. There was, you know, there. They had all the other explanations and as well and logic that we need to be familiar first with, with injections and and all the other stuff. But they said, I'm sorry we don't have enough resources. There is a waiting list you need to wait for six months. And I said, No, we're not, we're not going to wait. And then it. Me to another journey where I had to advocate for her. And again, reminding you, I was pregnant, very pregnant, very angry, and I was gonna say,

Speaker 1 25:08
I'm not, I'm not arguing with a pregnant lady trying to get an insulin pump for her toddler. That's for

Tzipi 25:13
sure. Yes, yes. So I was very, very angry, very into this protective mode. She's going to have a pump that's the best for her, that's the best standard of care. This is what she deserves. She's going to have a pump. So let's say I was, I had what I needed to do. I did what I needed to do at the time. So I even reached the media at the time. I was very much motivated. And eventually the doctors, and I'm very grateful for it. Until now, they approved the pump. It was, I think, two months in already. And I also mentioned loop, and there they were, very much. They they can't support us with that, so they referred us to another clinic that can offer support with looping and and, yeah, and then she got a pump, and it was one month before I gave birth, so it was we didn't have a lot of time. And you probably know that when you move from MDI to to a pump. There's a job. Everything is changing. CD, we

Speaker 1 26:03
gotta go back. Though you contacted the media, yes, what did you Oh, my God, I bet your husband was like, Hey, you should just do whatever you think is right. And then he hid in the corner

Tzipi 26:14
Exactly, exactly. That's exactly what happened. Yeah, I've been

Speaker 1 26:17
married a long time. I'd be like, Oh, I don't think I even want to be involved in this anymore,

Tzipi 26:22
exactly. He just let me do whatever. Are there news

Speaker 1 26:25
reports of him standing three feet behind you, looking scared? By any chance?

T.P. 26:29
I think I can find some pictures for sure.

Speaker 1 26:33
I'm here to be supportive. But I just want to say this wasn't my idea. Yes. So what did you do? Well, I

Tzipi 26:39
didn't go far because,

Scott Benner 26:43
like, oh my god, what is she doing?

Tzipi 26:47
Yeah, luckily. So it was I just contacted a reporter, and then I guess they contacted the hospital, and then I think it was Few days later where the hospital just called me and said, Okay, listen, we're going to approve it.

Speaker 1 27:03
And you misunderstood. No, we said, you can have it right away. Other people have to wait, not you,

Tzipi 27:08
yeah, and you know, they were very kind, because we had also special like family circumstances, with me being pregnant and my daughter, we just moved there to we enrolled her in a new school as well. So she, she started a new school I gave birth, so there were lots of changes, and I knew that her being on a pump right after will be a disaster. So I really wanted everything to be ready before all these big changes. So listen, way to go. Thank you. That

Speaker 1 27:37
was that. I am just trying to picture the doctor answering the phone and be like, you know, in that Canadian accent, he's like, hello. Then there's another Canadian accent. It's like, Oh, hey. And then they're, they're Owen and a and back and forth. And then the reporter says, why won't you let CP kid have an insulin pump? That guy was probably like, oh, what? Yes, no, no, no, we are going to do it. Don't worry. Yeah, exactly. I don't know how my impression was, by the way, but in my mind, it was pretty good. Yeah, yeah,

Tzipi 28:05
they're wonderful, and their support is amazing. But, and I get it, I get it. There is only so much they can do, unfortunately, with the public system. But yes, well, Thank

Speaker 1 28:16
God you didn't have to stick your polar bear on them or whatever it is you live up there with, Okay, well, way to go. And then, so then you set her up on loop right as you're getting ready to have the baby. Oh, my God yes, yeah, yeah. So you get that, you get that accomplished before you give birth, yes.

Tzipi 28:33
And of course, you know, right while I was giving birth, of course, all these things were happening. So we have a really crazy and fun story about as well, because we started with loop, and then we were, it was very new to us, and we were very careful, very afraid of insulin, to be honest. So in the beginning, she was running high for a while. And of course, the day I gave birth, she was running high too, and it was a disaster. This evening, we try, we try to put her to sleep. She didn't want to go back to sleep. She was so high she was running all around the house. Finally, after she calmed down a bit, I was sitting down just to have my dinner, and then, boom, my water broke, so I was chasing after her, while my water actually like dripping everywhere, trying to calm her down, trying to explain her I'm going to the hospital. We left to the hospital, and while I'm dealing with my contractions with one hand, I'm watching my phone, watching her numbers, and I see the numbers are not going down. So I'm saying to my husband, okay, you need to stop we need to stop it right now. You're going home. I just forced him to go home to check what's going on. I thought that something with a pump is not working. She's so high like something is off. Now I know that we just, we didn't give her enough insulin, but at the time, I thought that the pump is not working. So I told him, the baby is not coming. Until everything is settled, you need to go back home. So he went back home, and then, of course, loop stopped working when he came back home. Probably there was some updates. He didn't know what to do with at the time, he didn't tell me, luckily. Mm. Anything about that. He was able to sort it out. And numbers went down eventually. And then the moment he called and he told me, like, numbers are down, she's good, she's great, I started to feel a baby coming out, and that was a huge drama, because, you know, the doctors, they were pushing me on the bed, rushing me into the delivery room. I'm still watching the numbers, or my doctors were screaming, like, where is the dad? And the doula is, like, he went home to check his daughter's sugar number, and I'm like, I'm not waiting for him to come back, to be back. I'm just, I'm going to deliver this baby, and then I'm there lying there in the delivery room. And once the baby came out, my husband came into the room like this rock star, so we didn't miss it, luckily,

Speaker 1 30:42
and three nurses asked him out on a date, like you were half helping your daughter with her diabetes, and you made it back for this. I'm gonna marry you away from this later. Yeah,

Unknown Speaker 30:52
so that's crazy, yeah, when you

Speaker 1 30:57
said I was about to have the baby, and it was, I forget you said, upsetting. I thought you were gonna say because of how that happens. But you know where the baby comes from. I don't know why God didn't set that up better, is what I'm saying. You know what I mean? Like, if I put you in charge, would you go, Oh, you know where the baby should come out of? Oh, you wouldn't say that yes. Or you'd say, You know what? Let's get back together in a couple days. We're gonna meet again on this and see if we can't figure out something else. Yes, TV I saw, I don't know how this happens to me, but I saw a woman on Instagram do, like, a seven day postpartum check and like, she's like, I again. I don't know what my algorithm thinks I am exactly, but then there I was. I watched it because it was interesting. Like, you know, her stomach was shrinking over the seven days, she was excited. You could see the life come back into her face. Was really exciting, except during the entire thing, she was wearing a diaper. Oh, and I thought, how does this video, like, not just stop every woman in the world from having children? Like, how did they not how did they not see this and go, Hey, you know what? I'm gonna get a puppy.

Tzipi 32:03
But you know what? Giving birth was actually the best experience I had in this whole story, much better than, better

Speaker 1 32:11
than the diabetes. All right. Well, there you go.

Tzipi 32:14
It was actually pretty that part was actually pretty great. That's awesome. You know, having a newborn and a toddler with type one diabetes in the beginning was definitely, definitely challenging. I remember holding my baby in one hand, breastfeeding him, and holding my phone in another hand, giving my daughter insulin in the middle of the night because she's high. So that was, that's how it looked like about

Speaker 1 32:35
your emotions around that time. Did you feel it bleeding over to the diabetes? Well,

Tzipi 32:39
yeah, of course. So I felt, and I'm still actually pretty sad about that, because I really felt that, unfortunately, I didn't have a lot of in the beginning opportunities to connect to my baby as much as I wanted, because I was so distracted with diabetes. As I said, everything was so new. The pump loop, my daughter started a new school. So there were so many things around that, meeting our teachers and explaining everyone, educating everyone around that. So it was a lot of work.

Speaker 1 33:08
Yeah, you missed a little bit of time with a newborn. Yes, and experiences. I've been thinking about that a lot lately, actually, about how, like the course of our lives are different than they would have been in the and the little things that get lost or I just was just watching myself and my wife kind of go through our house the other day and do our jobs and then do the things we do with the kids, and do the things that you do for meals and the home and the whole thing. And I step back and I thought, there's not a split second of free time in our life. Not just not we just go from one thing to the next to the next to the next to the next, and then to bed, and then sometimes you don't even get to sleep.

Tzipi 33:50
And so do you feel it, too? I do. I think

Speaker 1 33:53
it's a little how we're wired, like in general, like my wife and I are hard workers, like, so I think that's a little how we're wired. But at the same time, by the way, I don't mean to say that people who take downtime aren't hard workers. I just mean, like, we get things done. You know what? I mean the diabetes part. Like, I looked at the day and I thought, actually made me think more about when Arden was younger, because at this point, you know, there's not as much diabetes in our day. Now I just think we're wired this way. But I look back to when she was younger and it was just one thing after the next Exactly. And I thought, Do other people get to stop? Do they get a half an hour? Like, like, you know, I eat standing up.

Tzipi 34:33
I do the same. Yeah, it's funny. My husband and I like, Yeah, we don't get even to enjoy our food or not to mention our sleep. My

Speaker 1 34:41
kids all the time are like, Why don't you sit down? I'm like, sit down. Like, I just gotta get this in my face so that I can do the next thing I gotta do. Yeah, and I just wonder how much I think I'm always gonna wonder, how much diabetes put me in this position, and how much this is just who I am. I'm not sure

Tzipi 34:55
that's amazing. I mean, to hear not amazing, but I mean, I'm relieved you. A way to hear because I feel that too. And I also want to mention that diabetes really put me a lot of many times in this fight or flight mode. And I guess this is pretty common, especially in the beginning, because I feel that this is my feeling, at least, that you can't get too comfortable with diabetes one moment you know exactly what you're doing. Everything is working really great. And the other moment like something, something is happening. And I feel like you always need to to watch out and to pay attention, pay close attention to what's going on. And you know, especially when she's in school. So I feel that all the time, like it's hard, it's hard to calm down, it's hard to relax, it's hard to have some downtime. And it's not

Speaker 1 35:41
unreasonable, either. CP, it's not like you're sitting there worrying about something that you're like, oh, you know, I'm just a worrier. Like, they're they, they have trouble communicating still, right? They're young, exactly. You can't communicate with them. They don't really understand. Like, if I went and grabbed your daughter right now and was like, pulled the curtain back, and I was like, Hey, tell me about your diabetes, she'd be like, I'm a superhero. High offense. She wouldn't be like, Oh, if I get too low, I could have a seizure. Like, she wouldn't, yeah, like, she doesn't have that concept, so she's not going to know what to say. So that's for you to worry about, right?

Tzipi 36:13
Exactly? And it's also hard. I'm trying really carefully to watch first symptoms, like when she's low. I'm trying to see, like, can she communicate it? And it's so weird, she can be low, and then she's running around the house, like, like, this, this many and, you know, demon and like, I have no idea if I if I'm not looking at the numbers, there is no way for me to know that she's low when she's high. It's easier to see, I think, with her, but I feel like there are no symptoms, no warning signs. I have to

Speaker 1 36:42
tell you, I love that. With your accent, you went for Tasmanian. That was awesome. I was like, is she gonna shoot for Tasmanian? Go ahead. I will tell you, it was so variable with Arden when she was little, and we didn't have a CGM and we didn't have a pump, like in the first four years, and so it was up and down. And like, she'd get active, her blood sugar would fall. Like, I have to be honest with you, back then, I didn't even know activity made her blood sugar fall back then. Like, I didn't put those two and twos together yet,

Tzipi 37:10
yeah. And it makes sense, like, well, of course, but then, you know, yeah, who's

Speaker 1 37:14
gonna tell me back then? And, yeah, I don't know. Like, there's something about that, about them being so little, and not being able to communicate it well, and it being so variable, and the tiniest bit of insulin moving them one way or the other, they don't weigh very much. And I don't know like I just think that if I could go back and watch myself in those first couple of years, I probably had the same experience with Arden's toddler years as you had with your baby's newborn days, like, I just think I missed a lot, just staring, you know, I actually, I wrote a blog post one time okay about staring at her, trying to figure out if she was okay really, because I would, I was like, maybe it's the bags under her eyes, maybe it's this, maybe it's that like, and what I ended up doing was, like, I kept taking pictures of her face. Really, I'd test her blood sugar, take a picture of her face, write the number with the blood sugar, then go back later, give me ideas. No, no, listen, let me tell you what. It was a huge waste of time, because all I learned was I couldn't look her in the face and tell if she was high or low. That's all I learned. I couldn't tell. I went back later, looked at I was like, I don't remember what face goes with what number. Wow, yeah, I beat myself up, staring at her constantly, always thinking, like, is she high? Is like something happening? Is she gonna get low? A lot of my time was spent doing that.

Tzipi 38:31
I know I do the same, and it's just that's what I realized just recently, that it's pointless because there are no answers, and sometimes I'm looking at her, Oh, and she, she's, she looks pale. Maybe something is off. But it's not like, there are some times that she's perfectly fine and she looked a certain way. It doesn't mean anything, yeah, it means

Speaker 1 38:48
you live in Canada, and she's not outside very often the in the sun, yeah, yeah, right. Like, but meanwhile, you're, you're trying to diagnose the whole situation, like in, like a lunatic, trust me, I knew I was a lunatic back then. Now, looking back, I just feel bad. I actually, I feel a little bad for my family back then, like for us, just because I see what the technology does. Now,

T.P. 39:13
yes, you didn't have all the technology back then a few

Speaker 1 39:16
years in the other direction would have been such a big deal. Yeah,

Tzipi 39:19
you know? So anyway, yeah, we're facing similar, similar challenges, I guess, with the toddler, of course, yeah, yeah. And I'm just wondering, because I found myself, in the beginning, very much obsessed with their numbers. I was connected to my phone the whole time. I didn't have a break. It was crazy. Of course, being on a pump brought us more more stability, for sure, but I'm just actively trying to, you know, to calm down a bit and to give myself more time for just doing other other things. And my husband and I were trying to be, you know, a team is also very great in the beginning. Of course, he was like. Success than than I was with the numbers, and that brought some disagreements, but now we're really trying to divide all the responsibilities and work so I can have my downtime and he can have his own downtime knowing that someone else is watching. And that brought a big

Speaker 1 40:14
relief. I have to ask you, did he pull it together when the reporter showed up at his house to ask him why he wasn't taking it as seriously as you were here, because CP says, like, Oh no, she misunderstood.

Tzipi 40:31
Oh yeah, that was definitely something to to remember. Yeah, what

Speaker 1 40:36
do you think that is? How long have you been married? Nine years. You're in your 30s, right? Yeah, okay, okay. And so when you say that the way you said it, he didn't take it as seriously as I did.

Tzipi 40:46
Like, what do you he wasn't as obsessed, or maybe, yeah, but what

Speaker 1 40:50
does that mean? Like, because what it means is you didn't think he was putting in the effort that it needed. His

Tzipi 40:54
nature, in his nature, is much more relaxed than I do. I'm, like, immediately jumping to, you know, to the rescue. I'm all I come so ready and so fast to act, so quick to act. And he's more is more chill. That's, that's who he is in general. So I felt like he thought somewhere that, Oh, that's okay. I can catch her numbers. I don't need to follow. Like, every five minutes. In the beginning, it was every five minutes, because when she was on injections, she wasn't stable at all. It was crazy. We gave her fast acting in the morning and then intermediate acting, and so we'd never knew when the peak is and of the insulin, and so she was always high or low. So I felt like we need to be on top of it. I mean, it was watching, of course, but he wasn't so obsessed. So obsessed was

Speaker 1 41:42
he just, Was he being a boy? What are we talking about here? Exactly, you know what? I mean?

Tzipi 41:47
I'm not sure. I think it was a big shock to it. Yeah, hearing the news that your daughter has this potential life threatening illness was very, very shocking to him. So I think it took him time, and it takes time, right, just to to process this, this, it's, it's big, yeah, realizing that something like this happened, and it brings lots of losses. And at my work, I'm very much aware of the fact that any chronic disease brings lots of losses and grieving process. And diabetes is like changing so quickly the nature of diabetes, and it's something really big to grasp. So I think obviously it took him time to really realize and accept that, yeah, this is what it is. And

Speaker 1 42:27
can you share some things that you feel like you've lost? Oh,

Tzipi 42:30
first of all, sleep. That's the most obvious, obvious part. I just said to my husband a few days ago that I really miss the feeling of just lying down in bed and just like collapsing, just going to sleep without thinking too much about tomorrow, about an hour from now, just sleeping, being able to shut off, yes, yeah, yeah. Now I'm waking up every every two hours, also because of my newborn, but also because of her checking her numbers. And that's the saddest part, that our lack of sleep is not so much related to turn having a newborn, but more to the fact that her daughter has diabetes. So it's always you know about monitoring? Yeah,

Speaker 1 43:10
do you find yourself limiting things that you would like to be doing because, like, for instance, I don't drink, but if I did, I don't think I would be able to bring myself to do that, because I would think, like, what if I got, like, what if I was inebriated and something happened? Like, couldn't, like, deal with Yeah, yeah.

Tzipi 43:26
So I mean traveling, we're still very much worried about traveling, for example, outside of our of the country, because I'm thinking like, what if, what if something happened? And then, like, what do we do? Also, in the beginning, at least, we were avoiding going to some places my daughter really liked in the beginning. Like going to the farmers market. She used to like it so much. But she used also to eat. My daughter, in general, she's eating very healthy. The most crazy stuff she's eating are fruits, like bananas, apples or favorite thing was to go to farmers market and to eat this huge bowl of fruits with yogurt. So we were avoiding it in the beginning, because we were like, I'm not doing that. Like she's going to spike. I'm afraid to watch. I can't watch. It's too painful. So we're avoiding that. But then when we started with looping, we started to experiment more and try out different things. And we found out that it it can work. So we started doing it again just recently, also going to parties, I mean, like social gatherings with her was very scary, because she loves snacking, like any other toddler, and she used to snack constantly. And I think I asked one time in the Facebook groups, in the Facebook group about you, about snacking? What do you do with a toddler who can't stop snacking? How do you manage that we'd look it's easier, but that was very stressful. And I didn't want to say no, I didn't want to limit her, yeah, with food, because food is also a passion of mine. And before she was diagnosed, we're doing it a lot like go. I took her to like, really good restaurants, and I was so I love it, just to introduce her, like different foods to her. And that changed a lot after. Area diagnosis, so I was very careful. All of a sudden of food. I was terrified of apples. That sounds ridiculous, but I was terrified of apples.

Speaker 1 45:08
I've had those, like, similar feelings, oh, okay, just looking at certain food and being like, Oh, wait, I don't know what to do. I don't know what's going to happen. Like, we can't just eat this because I was a stay at home dad when Arden was diagnosed, and my wife worked in the city. She took a train to work like she was gone big chunks of the day. So we'd get up early, get mom off to work, and Kelly would come back, sometimes 567, o'clock at night. And sometimes she'd come back and it would be after dinner. And so she'd say, Look, I'm just gonna grab something on the way home. So I'd already fed the kids, managed the insulin like everything was like coasting towards, you know, bedtime, and my wife would roll in with like a sack of food. It was hot and it smelled good. I felt like she came into the house with a flame thrower, you know? Yeah, just like, Here I am, like, I'm just gonna lay waste to this place. Like, that's how I felt. I'm like, I'm like, do not bring more food into this house, please. Like, I've already, like, I've done this for breakfast, for lunch, for dinner, for snacks. Like, I'm done, don't you know, I think I might actually have her blood sugar reasonably well, which, by the way, I probably didn't, and that food would come in the house. Did that happen? Oh, it scared the hell out of me. And then that's when I would usually just because then I realized, like, plus my wife not gonna eat. Like, this is where she lives, you know what I mean? Like, so I was so upset and frustrated. I would oftentimes say, Hey, I didn't get a chance to take a shower today. And I would go in the bathroom and get in the shower, and I would cry because I was just like, I like, I can't do this again today. I

T.P. 46:43
know the feeling, yeah, I know the feeling so well. Yes. Anyway,

Speaker 1 46:46
so what'd you say? Afraid of apples. That's what we're gonna call it, apples and bananas. Don't try to, don't try to change it from afraid of apples. I love that. That's a great title, but not any longer, because, why? What did you learn? We

Tzipi 47:01
learned how to dose for it. Of course, it made a big difference, like changing also the insulin type. So as I said, I was reading a lot, and she was using different insulin. The beginning it was, it was horrible. So nothing really helped, no matter how much, how much time we waited after giving her insulin, it didn't help. She was spiking so bad, so I read, and we moved to Fiesta, and that made a huge, huge difference, like a change in the way we manage your blood sugar. So it helped a lot. So we started to, like to give her, yeah, big apples. And I have to tell you, she can eat, like, huge apples one after another, and she will ask for more and to us. And as I said, we didn't want to restrict her. We're still, like, a bit stressed about it, because, you know, she was like, asking, like, Mom, can I have apple, but a big one, a big apple? And I'm like, Yeah, sure, yeah, an apple. And then she was asking for another one, can I have another apple? Yeah, sure, another apple. Then can I have a banana? I feel like she was testing us, to be honest. But

Speaker 1 48:03
she was like, should I think I can make this lady crack? Watch this. Can I get a banana?

Tzipi 48:08
Exactly. So she was just eating anything, and me and my husband were looking at each other and like, Oh, my God, what are we going to do? So we're just throwing insulin at her. Yep, it helped. It worked. I mean, it was, it was okay. It's still not perfect, obviously, but it's much better. She's not restricted. Now she's just she we're really trying to let her eat whatever other kids are eating, which is different than what we're eating at home. For example, today, you You caught me in a gray day because our teacher just texted me yesterday saying that, you know, hey, there is a birthday party today and we're going to have cupcakes like, okay, great. Another show. And so she sent me the pictures, and we were trying to estimate and and hopefully I didn't check my phone today. I really wanted to be present for a change in this, you know, very important podcast, so I didn't check my phone. My husband is on it, but I hope it went well. So we're just trying to do a better job.

Speaker 1 49:01
Yeah, no, I'm sure he's doing a good job, but later, you can let him know when he didn't. I have to tell you that like I drifted away a second ago, like you were talking about the apple and the bigger apple and the bigger apple, and you said, you know, the blood sugar is going to go up and and I just started thinking about all the times when Arden was little that her blood sugar was high and I didn't know what I was doing. And I swear to God, I thought I was gonna cry.

Tzipi 49:22
There is a lot of self blame around that. Yeah,

Speaker 1 49:25
that's exactly right. Like, I thought, I actually thought, like, oh god, how many times did I screw all that up? You know? Yeah, you

Tzipi 49:32
feel it's all you right, like you did it. You're the reason why she's high or the reason why she's low, and that's, that's what I feel constantly. And that's

Speaker 1 49:40
terrible. Not true either. And, you know, it's diabetes, like, that's the problem. Like, you know what I mean, and I was trying to figure it out. I didn't have, like, a podcast to listen to back then, or something like that, but I was, I was doing my best to figure it out, but it just, you know, I more from thinking about how I felt taking care of art and how I feel. About it when I reflect back on it now, but now I've had, like, you know, this decade of experience making the podcast, and now everybody's story just floods into my head as as, like, one big idea of, like, there's a two year old right now who has type one diabetes, and their parents listen to the podcast, and maybe they're going to figure the whole thing out and never end up going through what I went through, right? And then, in my mind, that little kid becomes Ryan from like an episode A few days ago where he, you know, was little when he was diagnosed, and they nobody knew what they were doing. And 40 years later, he's got retinopathy, and he's having eye surgeries, and wakes up blind one day, and then he finds the podcast, and he's okay for every person you reach who might not end up down that path, there's probably 10 people who never even gonna know the podcast exists. That not intersecting with some valuable help. I wasn't intersecting with valuable help. I genuinely don't know how I got to where I am today. When I look back on it, I just

Tzipi 51:00
I can't even imagine, and you didn't also have the technology. It was what

Speaker 1 51:03
you were talking about earlier. Like, I all I really had was that incredible feeling of responsibility. Like, I honestly think that that's the way I'm wired, and that's why Arden's okay today. Like, I swear to you, I don't want to dig too far into this, because you're, I think you're a therapist, yes, yeah, I don't want you charging me, but I'm adopted. My adopted father left my mom, I raised my brothers. I have a lot of empathy for what they went through, and I think that that part of my life wired me to feel very responsible for things and people. That's amazing. That's how I got through not being told anything about diabetes, to being the person I am today, and having shared the things that I've shared so far, I don't have it in me to bail on something that's pretty much it. There are times, I have to be honest with you, there are times I'm like, I wish this wasn't who I was. Like, there are times I'd like to look at people and go, Hey, you know what? You're all on your fucking own. I'm going. I cannot do that for some well, not for some reason, for pretty obvious reasons, probably, but, you know, anyway, but, but your daughter is very lucky. You guys are all lucky. My dad left my mom or, like, I don't think you'd know how to take care of your kids. Seriously, it's just so strange to see how the dominoes fall. You know, that's all, yes, yeah, yeah, yeah, I get it, but you're making me think about that today. You're doing an amazing job. You had to learn everything by yourself. And she's doing great. From what I've I've been reading, she's doing great. She really, yeah, but I mean, like, that's something to be proud of. I'm proud of it, yeah. Like, don't get me wrong, I guess I'm in a spot this week where the people around me asked me to go back and listen to some episodes. Like, like, I'll record this with you, and it'll go out to an editor to rob. He'll edit it, it'll send it back, and, like, six months from now, I'll put it online, and then somebody's gonna hear it, but I'm not going to remember it. I'll have the feeling from it and the things that I've learned from our conversation today. But like, if you said to me six months from now, oh, this is Cp, do you remember you talked about with her? I'd be like a Canadian lady, because I'll have had very likely 2046, I'll likely have had 120 more conversations between now and then. Yeah, wow. People around me said, like, you got to go back and listen to Ryan's episode. And it's called blinded by the light. I think it's like 1411, or somewhere around there. And I went back and listened to it, like, really listened to it as a listener, like, not now, like you might be surprised to be, but like, when we're done recording, it's my job to make a voice note about what we talked about, and I'm not very good at it. Like at the end of the hour, I almost won't know what we spoke about, and I swear to you, so I get sent back go listen to Ryan's episode. And when I listen to Ryan's episode, what I heard him tell me was, I'm not blind because of you. And I was like, I don't remember that happening while we were having the conversation. Like I remember him saying, remember him saying the podcast helped him and like, the things he learned, but like, contextually, like, I didn't remember that. So I anyway, I've had that experience in the last day or so where I went back listened to that he sent me a private note since then about it. People around me have said, you know, this to me, and so while you and I are having this conversation, I feel a little pressure to keep the podcast going, to find the next person who might be Yeah, like, find value in it and and that's

Tzipi 54:31
so important. That's so valuable. It's where you got because you helped me a lot. And I'm sure there's so many people out there that gain so much from these episodes. And that's why I'm I'm here too, because, you know, when my daughter was diagnosed, I immediately asked the the doctors, do you have any support groups? Do you have can we see a psychologist? Because really, this is something big, we need to talk about it with someone. Yeah. And they said, well, we don't really have support groups, and we can. We can refer you to social work. Occur. Now, I know how important it is to talk with someone to process all these big changes, and I felt very sad that they didn't have anything concrete to offer. So these days, I'm actually working on some you know, I have so many ideas as part of my professional work, just to start groups for parents, because I know there is a huge need here, where I live, for example, and there are so many parents out there who feel so isolated and so lost, and it shouldn't be like that. If you

Speaker 1 55:27
can get that accomplished, I think that would be fantastic. I don't know. I found myself today talking to you and the things that you're bringing up or bringing up, like memories about me being, you know, with my daughter when she was younger, with type one, and now they're getting conflated with the almost professional pressure I have to to get the podcast out to other people. So anyways, I shared last night with a person who asked me to go listen back again, and I said, I feel a lot of pressure listening to Ryan, but it's good pressure. Like, I like it. Like, that's the difference. It's kind of the thing that, should I get up tomorrow and just be like, Oh, I'm tired. Like, I won't, I wouldn't, you know, like, that wouldn't stop me, because I would, I would honestly think, like, this is the stuff people need to have these conversations about. They need this community. They need these ideas. Yeah, and why did I go through all of it to learn all of it if I'm not going to share it with somebody, yeah, that's

Tzipi 56:23
amazing. Yeah. So here we are. Yeah, and I'm very happy that this is where you're

Speaker 1 56:27
you're at. Thank you. Well, I'm glad for how well you seem to be doing, too in such a short amount of time. Oh, has that occurred to you? It doesn't feel like no, but, but does it occur to you that like you've had such a quick turnaround? Or does it not feel quick. It definitely

Tzipi 56:41
feels quick. I think everything happens so fast. In general, all these life changes, the baby and diabetes, and I don't know how we made everything so fast. I think, as I said before, and as you said before, it's just my sense of responsibility for my daughter and wanting her to have the best, the best life ever. And you know what being pregnant? You know that was the strangest and saddest feeling ever to carry this precious baby inside of me while learning that my other baby is having this potentially life threatening disease. But I think it pushed me to really advocate for my daughter learn as much as I can about diabetes make sure she's getting the best possible care, because that's not obvious. It's unfortunately, it's not always the case. People need to wait, especially in the public system, people don't always know that there are other like options or different kind of kinds of treatment. Yeah, I'm really happy that I was able to do everything so quickly. Yeah, and I'm trying. Yeah,

Speaker 1 57:44
you are, you are, like, I'm just gonna tell you, like I was still crying in the shower two years into it, so like, You're doing fantastic, you know, like, I'm, I'm very happy for you. I also cried in the shower. Where do you do it? Exactly, in the car, the

Tzipi 57:57
shower, in the car. Oh, my God, I didn't tell you the story. When I was eight months pregnant, and I watched my daughter's numbers just dropping, and she was in a daycare before we moved her to the school, to her school, and I tried to contact her educator, and she didn't answer. And I see her numbers just dropping, and I'm like, eventually I went out to the car with my glocagon and in my hand, because I was already preparing for the wars. I see numbers dropping. I was driving the neighborhood like crazy trying to locate her, only to realize that I have no idea where they are because they were in some playground. So I was crying in the car that morning, like I was crying so bad that was definitely have you ever heard

Speaker 1 58:35
me tell the story of the time I was in the shower and Arden's blood sugar started crashing while she was at school? No, I literally, like, jumped out of like, I tried texting that happened to me yesterday. Yeah, she didn't answer. I tried calling. She didn't answer. I tried to call the school. No one answered. The school's like, across the street from my house, so I came bursting through the front doors of the school and stopped at the window because it was post 911 so you couldn't get through the you can't just walk into a school. I don't know if you all remember, used to be able to smoke in movie theaters and just walk into a school. You can't do a lot of things like that anymore. But yeah, I got stopped at the window, and just as I was about to identify myself, to say, Listen, my daughter is likely about to have a seizure in the gymnasium, I look down and she texts me, and she goes, Oh, hey, I got your text, and I drank a juice. I'm okay. And the woman looks at me, oh, my God. She looks at me like, Uh oh, this is why we don't let people in. Because I did not like, you know, do my hair or anything like that coming out of the shower, and I just looked up at her, and I went, Hi, sorry, false alarm, and I walked right back out again. I didn't even tell her why I thought they'd have me locked up, you know what I mean? So, oh my

Tzipi 59:46
god, yeah, that's exactly what happened to me yesterday, to be honest. Finally, when I had some time to take a bath, I see her numbers just crushing and I was like, yeah, getting all wild and crazy, jumping out

Speaker 1 59:57
of I just got back. I sat in my car, and I. Was like, Okay, I'm gonna go back. I'm gonna go finish my shower, and we're gonna try again.

Tzipi 1:00:06
For you, I didn't. I didn't dare to try again. I knew that something and something new might come up, so I just gave up. I'll

Speaker 1 1:00:13
give up. Well, it was awesome talking to you. Have we? Have we missed anything or anything that you wanted to talk about that we didn't?

Tzipi 1:00:19
I just want to emphasize how important it is to just reach out to others. Really talk with as many people as you can. Reach out. Don't, don't be alone in this, because managing type one diabetes is very, very challenging. It's not, it's not like you just take a medication and and done like you really need to be mindful about all the different factors that can affect sugar levels. You know, all the doctors keep saying that's very rare, especially in young ages, but it's actually not so rare. I keep hearing about so many people and newly diagnosed kids, and there are many parents out there who are going through very similar experiences. So just, just reach out for support. Don't, don't stay alone with with all of this, like this roller coaster, let's

Speaker 1 1:01:01
say, Yeah, terrific message. That's awesome. Okay, thank you. Thank you so much. Scott, oh no, it's a pleasure. It absolutely is. Can you hold on one second for me, sure. Thank you.

Speaker 1 1:01:17
The conversation you just enjoyed was sponsored by Omnipod five. You want to get an Omnipod five, you can you want to make me happy, do it with my link. Omnipod.com/juice box. A huge thanks to us med for sponsoring this episode of the juice box 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. Earlier you heard me talking about blue circle health, the free virtual type one diabetes care, education and support program for adults. And I know it sounds too good to be true, but I swear it's free, thanks to funding from a big T 1d philanthropy group, blue circle health doesn't bill your insurance or charge you a cent. In other words, it's free. They can help you with things like carb counting, insurance navigation, diabetes technology, insulin adjustments, peer support, Prescription Assistance and much more. So if you're tired of waiting nine months to get in with your endo or your educator, you can get an appointment with their team within one to two weeks. This program is showing what T 1d care can and should look like currently if you live in Florida, Maine Vermont, New Hampshire, Ohio, Delaware, Missouri, Alabama, Mississippi, Iowa or Louisiana. If you live in one of those states, go to blue circle health.org to sign up today. The link is in the show notes, and please help me to spread the word blue circle health had to buy an ad because people don't believe that it's free, but it is. They're trying to give you free care if you live in Florida, Maine, Vermont, Ohio, Delaware, Alabama and Missouri. It's ready to go right now. And like I said, they're adding states so quickly in 2025 that you want to follow them on social media at Blue circle health, and you can also keep checking bluecircle health.org to see when your free care is available to you. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. If you're not already subscribed or following the podcast in your favorite audio app like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcasts and set it up so that it downloads all new episodes. I'll be your best friend, and if you leave a five star review, ooh, I'll probably send you a Christmas card. Would you like a Christmas card if you or a loved one, was just diagnosed with type one diabetes, and you're looking for some fresh perspective. The Bold beginning series from the Juicebox Podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginning series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698, in your podcast player. Or you can go to Juicebox podcast.com and click on bold beginnings in the menu. Hey, what's up? Everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way recording doing his magic to these files. So if you want him to do his magic to you wrong way recording.com, you got a podcast? You want somebody to edit it? You want rob you.

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#1508 After Dark: 8 Seconds to Dublin

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

Em, 28, juggles type 1 diabetes, bipolar highs and lows, ADHD, and alcoholism while battling her parents for custody of her kids—chaotic, raw, and impossible to look away.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Speaker 1 0:00
Welcome back friends to another episode of The Juicebox Podcast.

Em 0:14
Hi, my name is Adam Millen. I am 28 years old. Was diagnosed with type one diabetes six weeks before my sixth birthday.

Speaker 1 0:23
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. I know this is going to sound crazy, but blue circle health is a nonprofit that's offering a totally free virtual type one diabetes clinical care, education and support program for adults 18 and up. You heard me right, free. No strings attached, just free. Currently, if you live in Florida, Maine Vermont, New Hampshire, Ohio, Delaware, Missouri, Alabama, Mississippi, Iowa or Louisiana, you're eligible for blue circle health right now, but they are adding states quickly in 2025 so make sure to follow them at Blue circle health on social media and make yourself familiar with blue circle health.org. Blue circle health is free. It is without cost. There are no strings attached. I am not hiding anything from you. Blue circle health.org, you know why they had to buy an ad. No one believes it's free. This episode of the juice box podcast is sponsored by the Dexcom g7 the same CGM that my daughter wears. Check it out now at dexcom.com/juice, box. Today's episode is sponsored by the tandem Moby system with control iq plus technology. If you are looking for the only system with auto Bolus, multiple wear options and full control from your personal iPhone, you're looking for tandems, newest pump and algorithm, use my link to support the podcast, tandem diabetes.com/juice. Box. Check it out. Hi.

Em 2:04
My name is Millen. I'm 28 years old. Was diagnosed with type one diabetes at our VH Royal Victoria Hospital in Barrie, Ontario, six weeks before my sixth birthday in June, 2002 so I've had diabetes for if you do the math, I don't want to do it, but a pretty long time.

Speaker 1 2:25
Yeah, yeah, you're 28 now, you said

Em 2:28
I'll be 29 July, 31 Leo, oh,

Scott Benner 2:32
I don't know what that means. Leo, what does that mean?

Unknown Speaker 2:35
It means I bring the fire. You're

Speaker 1 2:38
trying to say you're a big pain in the ass. M, is that? Is that? What's going on

Em 2:42
here? I've worked really hard as a diabetic. I've been a single mom, put herself through college. I was planning to go back to school, but I just went through a divorce. That's been pretty messy, but that's okay, you know, I got arrested with a blood sugar of 16, and then the police in my local municipality were denying me insulin. So when my EMS buddies rolled up, they gave me insulin right away. You know, I've been institutionalized twice in my place of work, and it just made me stronger. It made me work smarter, a little bit harder, but I know when to dial it back as well. So I'm just proud to know what I know, and to never give up and to keep grinding for sure, Scott

Speaker 1 3:21
and I want to go through all of it, so let's dig through so what do you mean? You were institutionalized twice. So I

Em 3:29
work with my mother and my ex husband. We work for the same institution, but I grew up working in healthcare after I finished my diploma for office administration with health services when I got diabetes, you know, there wasn't a lot of this technology. We didn't have these podcasts. We didn't have parents like you, you know, who gave their daughter and other parents and children hope and tips to take care of diabetes. You know, I was diagnosed by a woman who followed me through my entire pediatric course. So when I see a new diabetic child, you know, my heart, it just goes out to them. You know, there's so many barriers to access to education and diabetes. You know, my educators will bring me in, and they'll be like, What do you think you should do? And I'm like, I don't know. You know, why am I here? You know, I can test my blood sugar by checking my pulse. I can test once a day or none at all. And I can tell you, you know, I started getting complications as a rebellious teen, because I grew up with a mom who was like, you cannot eat sugar. So then I would go and I would binge eat in private, and my weight was always fluctuating, but I was always an active kid. For me, I think growing up as a bit of a rebel with diabetes, when someone told me I couldn't do something, I just did it in excess amounts, you know, like being bold with insulin, my insulin needs have cut like in a third recently, I've lost 70 pounds since October, which was ironically, when I. Got married when I was institutionalized, it was because my parents had lied in a court of law, which is okay, we're sorting that out in court with the custody of my children, who I love more than my life. As I'm sure you can relate. You know, your daughter is type one diabetic too, right? Yeah, and as an adult, I'm sure you respect her choices. You know, my mom is always saying things like, don't get a piercing. Don't get a tattoo. Well, I have a piercing. I have tattoos, and I know how to heal them, because when my blood sugar goes high, I can feel it, you know, I can feel capillaries in my eyes with blood vessels leaking. I can feel, you know, when I was institutionalized, they were withholding insulin. Medical Doctor actually got involved. He went to medical school with my endocrinologist, my adult one. So she's always been super respectful of me. You know, I'm really close with her and her husband, who's her receptionist, because we live in a modern world now. So, you know, I used to insulin ration as a university student, and I dealt with a lot of alcoholism and addiction, because, you know, when you go to university three and a half hours away from your parents and you're with a bunch of Toronto kids, well, what are you going to do? You're going to drink to excess, you're going to party. But I was always getting great marks until I wasn't I overslept. I underslept. I didn't know when to take a break, and I'm a musical theater kid when I go on a ramble, it's just because I'm so passionate in in diabetes education and patient advocation and care. So I'll throw it back to you there. Scott, yeah.

Speaker 1 6:33
So, so what's your diagnosis like? Is it a mental health diagnosis?

Em 6:38
Yeah. So in 2016 I was diagnosed with an active addiction. This is a bit of a tough subject, but I had been sexually assaulted at a party. A good childhood friend of mine at the time, had brought me to a party. I don't even remember what I was drinking, what I was doing. I just remember being afraid and feeling alone, and then, you know, she left me there with a bunch of guys I didn't even know. And, you know, they took my phone, they took my bag, and I was in the north end of where I grew up. But I something in me just said, don't call your mom, because she's going to be disappointed. You know, as I grew up in high school doing theater, what did we do? We drank a lot. I drank a lot of sugar coolers, right? Because we didn't have all these sugar free coolers. I grew up in bars as a half Catholic Irish drinking lots of whiskey, so every time I would drink it would be fine for a few hours, but then later in the night, you know, I'm vomiting, I'm blacking out. I'm, you know, my mom is yelling at me, telling me I pissed her off. And that's good and well, but there were no consequences in the morning to my actions. You know, if I was grounded, it was okay. Now you go do whatever you want. So when I raise my children, who thank goodness, take a break

Speaker 1 7:51
for a second, let me ask you a question. Okay, so like, Does your mom have any mental health stuff? Your mom or your dad?

Em 7:56
Oh, oh yeah, my dad has dementia. God love him. You know, he smokes a lot of weed. He was born in 420 of 56 so I really love my dad, but, you know, there's just a lot of history there, and it's not stuff we'll get into. But as it relates to diabetes, you know, my godmother passed away in November from cancer, and I attended her open casket service with my brother. All the photos at this were pictures in my childhood home. They were us growing up together, and my mom was like, Well, I'm not friends with her anymore. I'm not going. And I said, Well, I had the courage to go. I had the courage to see her children pay my respects. And you know, grief is not linear, and especially with diabetes, like she used to come pick me up from school. She had an oxygen tank, and she would feed me sugar and take me shopping and do all the things that my mom didn't want to do with me. I do love my mom, but, you know, she's an Irish Catholic. She doesn't she doesn't believe in therapy, I was actually doing therapy with a young type one diabetic therapist, and we were laughing, because at the end of every session, she'd be asking me about the difference between libre Dexcom, you know, I like to make it old school with diabetes. I like to live on survival instinct some days, because when I have a sensor on, well, then I stopped feeling the highs and lows, you know what I mean? Why is that? Well, I think I get so used to the technology, you know, like I love to turn my phone off. I love to write. I wrote a book of poetry in November called purposeful pain. And it's just through everything I've experienced in my lifetime with addiction, alcoholism, but primarily it goes right back to diabetes, because, you know, as kids, we want to rebel, and my heart really goes out to young type one diabetes now in early diagnosis, and my good friend of mine, who I got on the podcast, her son is three, and I was one of the first people she called to tell me he had been diagnosed. And you know, I was bullied a lot as a kid. I was bullied for being overweight. I was bullied for being one of the guys when you grow up with two brothers, and then you go on. To have two kids who are boys. You know, you don't really feel all that feminine. You live in that rebellious, hyper masculine. I'm going to do what I want, and people can tell me to eat a slice of humble pie, but I'm just going to have the cake and eat it too. Kind of thing, right? Like, I don't believe in Can I point

Speaker 1 10:17
something out? Yeah, I asked if either of your parents had mental health issues, and I've been to a funeral. Now I've been to like I and I heard your dad had dementia, which I'm sorry for. But does he have any mental health issues? Is he? Does he have bipolar disorder? Does he have this? Is there any of that in your family? Let's talk about the tandem Moby insulin pump from today's sponsor tandem diabetes care, their newest algorithm control iq plus technology and the new tandem Moby pump offer you unique opportunities to have better control. It's the only system with auto Bolus that helps with missed meals and preventing hyperglycemia, the only system with a dedicated sleep setting, and the only system with off or on body wear options, tandem Moby gives you more discretion, freedom and options for how to manage your diabetes. This is their best algorithm ever, and they'd like you to check it out at tandem diabetes.com/juicebox when you get to my link, you're going to see integrations with Dexcom sensors and a ton of other information that's going to help you learn about tandems. Tiny pump that's big on control tandem diabetes.com/juicebox, the tandem Moby system is available for people ages two and up who want an automated delivery system to help them sleep better, wake up in range and address high blood sugars with auto Bolus. You can manage diabetes confidently with the powerfully simple Dexcom g7 dexcom.com/juice box. The Dexcom g7 is the CGM that my daughter is wearing. The g7 is a simple CGM system that delivers real time glucose numbers to your smartphone or smart watch. The g7 is made for all types of diabetes, type one and type two, but also people experiencing gestational diabetes, the Dexcom g7 can help you spend more time in range, which is proven to lower a 1c The more time you spend in range, the better and healthier you feel. And with the Dexcom clarity app, you can track your glucose trends, and the app will also provide you with a projected a 1c in as little as two weeks. If you're looking for clarity around your diabetes, you're looking for Dexcom, dexcom.com/juicebox, when you use my link. You're supporting the podcast, dexcom.com/juicebox, head over there. Now,

Em 12:47
you know, that's a great question, because when he started, his mental health started deteriorating, and my neighbors reached out to me. They were worried about me, you know, because I used to babysit their kids. So my dad has been, he's been out and about in the neighborhood. He's been muttering to himself, you know, he forgets where he is. My neighbor told me he went over to her for an hour to talk about selling my car. I have two vehicles in my name, right? And he was driving my cars around. He was driving a car around with no license. And you know, I kept trying to make amends with him over it, because, you know, that's my dad. He worked really, really hard when I was a kid. He used to write manuscripts for airplanes, but his dad actually had bipolar disorder, and this was, yeah, yeah. So my dad was born in the 50s, and back then, you know, wait, I gotta ask you

Speaker 1 13:37
a question. Your dad wrote, your dad wrote manuscripts for air. Is there, like, a whole section of the world that, like, where airplanes are actors I don't understand. Like, what do you

Em 13:46
know? Literally, like, he, he worked for Bombardier, which was a Canadian company. And actually, in 98 my little brother was born in Seattle, so the company took us out there, and then they brought us back to Canada. And I remember when I was diagnosed, like I can remember everything from that time. I call them the finger pokes, those awful hospital things that just like, cut deep, right into your finger. And my dad was really scared of losing benefits. And, you know, he worked so hard. He worked two jobs, actually, in Toronto. He also was a janitor for a school board, so my mom was a stay at home mom, so she raised us, and then, you know, I rebelled a lot as a young kid with diabetes, I took over my own care at the age of nine, and she let me, so I'm really grateful to my parents for that. Did

Speaker 1 14:34
she have any health issues, mental health or otherwise? Well, none

Em 14:37
that I can diagnose, because I'm not a professional. I don't let my parents interfere in my, you know, privacy. I attend regular physician appointments. I got like, 10 doctors in my phone, and I try to follow up as much as I can, because, you know, I have a full license. I drive with glasses at night with an astigmatism. I go to regular eye doctor appointments. So it's really important to. Diabetes, that we don't neglect our self care, and that we have firm boundaries as adults as well. And children can have boundaries too, but I know parents care. So

Speaker 1 15:09
then, what about you? What are all the diagnosis that you have? Your type one? Do you have anything else? Yeah.

Em 15:14
So I was diagnosed in 2016 with bipolar disorder under active addiction. I was taking lithium for a long time, and I took it through having my first son, and he was born with, it's called a ventricular septal defect. So he was born with a little hole in his heart. You know, he was followed by a cardiologist while he was still, like in my stomach in gestation. He was born eight pounds, nine ounces, and they said, Oh, he's really long. He's a toddler. And then my second baby, I lost him in a miscarriage, and I named him Grayson. And that was 2021 so that was with the father of my second or third child, who is named Owen. And my first son is Evan. So Owen was born two years ago, on the 17th he'll be two, and he's my rainbow baby. You know, he is stubborn. He was 10 pounds at 36 in six weeks, because on the gram side of the family, you know, we gave him my ex husband's last name. They had big babies, like my ex sister in law, is tiny, but she was having big old babies. And how

Speaker 1 16:21
were your blood sugars? Your a one seeds during the pregnancy, they were okay. I remember my

Em 16:25
first pregnancy. I went in. I knew I was pregnant, but I was 21 and I was scared to tell anybody, because I was still in university. So when I moved home, my mom was like, I know you're pregnant. Like, there's no like, I was taking tests and hiding it from people. The father of my first son, you know, is not was never in the picture. I raised him alone. So I remember going in and my a 1c, was like, 11, and they're like, you gotta your baby will be born with complications. And I said, Okay, so the next month I went in, my ANC was five, because I knew I had to get my together as a mother. And it wasn't just about me. You know how to do it, though, I know how to do it. You know, with all the stress in my life, my last day a 1c was 7.8 and my family doctor was like, I'm shocked by this. Like, they were like, We're shocked with everything you have going on that you kept your blood sugars in control. I said yes, because I finally learned that no is a full sentence. No, I'm not going to extend my shift. No, I'm not going to extend a 12 hour shift. No, I'm not going to pick up another one. Because, you know, when I worked overnights in an in emergency rooms, I couldn't eat at night. You know, I feel sick at night, so I would try to eat during the day and sleep during the day. But then, you know, you got all those lows because you're taking too much. I take Tracy, but daily, and then I take fast acting, so whatever I can get my hands on with my benefits, or sometimes I just buy insulin and submit it later. Insulin rationing is like a really scary thing that I used to do, but I'm lucky to be in Canada, the New Democratic Party actually just made it free for diabetes to have access to insulin, and can't be denied it based on financial need. Tell

Speaker 1 18:05
me a little bit about how old were you when they gave you the bipolar diagnosis? And how does it like, yeah, it's kind of like, seasons, right? Like, like, yeah, yeah. Like, where are you right now? Yeah. So

Em 18:16
for me, I was 19, going on 20. You know, a bipolar disorder. There's a lot, I know, a lot of type of diabetes who gets active in addiction and alcoholism, and then they get diagnosed with that. And even I've had the same psychiatrist since then, and he kind of, he said to me, You know what? I think you were misdiagnosed and you shouldn't take lithium. When I had my last pregnancy with my little guy, what I did was I reached out to him. I said, I'm not taking lithium. He said, No problem. What do you want to do? I said, I'm going to wean off it. He said, No problem. So that's what I did. And by the end of my pregnancy, I was on no mental health medication, and I was already dealing with what I called pre Partum Depression. I was going to work every day. I worked right up until the last month, January 17 of 2023 was my last day at work. And then one of the OB, GYN, said, You need to stop working. And I was huge, like I had three pounds of fluid. At my last ultrasound, they thought he was going to be 13 pounds. So I had a C section scheduled.

Speaker 1 19:18
So, em, let's go back to the question, though you're delightful, by the way, I love you. You are not listening to me at all. No,

Em 19:25
I don't listen. No. Good early direction.

Speaker 1 19:29
What are the seasons of bipolar? Which one are you experiencing right now?

Em 19:35
So for me, this is not mania. For me, if I was manic, I would be racking up debt. I would be, you know, going around and doing whatever I could, like, I just remember being manic and like, I would just literally be cycling through people through the night, like I would go to one house, someone would, like, pick me up. I'd leave all my belongings with them, and then go to another place. You know, I've. Had people tell me, you're what? Your life isn't worthy. You know, you're a diabetic who works in health care. And I'm like, Yeah, but maybe that means my life is worthy. So mania, like, I could be manic right now, if I'm excited, right? But if I was manic, I'd be sitting here talking in code. I would be like, 333, but for me, you know, I just, I tell it how it is, because life's too short,

Speaker 1 20:24
so hold on. So if you were having a, if you're in a manic phase, yeah, I'd feel like I was listening to someone who was just speaking a different language. And you would be making sense. You you would think you were making sense. Yeah, okay. And then yeah. And then, like, right now, yeah, you are keywording like you're keywording yourself. Yeah, I say something, you get maybe a sentence into it, and then you hear a word in it. You follow the word, and while you're explaining that, you hear another word and follow that word exactly,

Em 20:55
because that's how my brain works. You know, I was actually just told I had ADHD as well.

Scott Benner 21:00
So, I mean, I'm not surprised, if I'm being honest.

Em 21:04
So my diabetic nurse was like, I don't think you have any of that. I think you're just traumatized from diabetes. And I was like, Well, what is it, you know? What is it?

Speaker 1 21:12
So, how does it impact your life? Yeah, I heard what happens when you're manic when you're not? Do you have a moment where you can you see yourself, like, do you look back at a manic episode and go like, Oh my God. Like, or is it like, it never happened?

Em 21:23
No, I definitely when I got sober again, like, I'm just past two months sober, it was really important for me, because my last drink, I ended up blacking out so bad. Like, my ex husband was the one keeping me alive. He was checking my Dexcom. I remember waking up that morning, and I crawled to the shower, and he was going to work, and I called him, and I said, You need to come home. And he's like, no, no, I'm at work. I said, No, no, you need to come home. I couldn't look my children in the face. Manic. Emily would have woken up, kept drinking, not given a what happened? And then she would have been like, on a Benner, right? Like I saw my son yesterday. I hope I see him again tonight. But for mania, like, what I would be doing right now is telling you, oh, I'm flying right now to where you are, and we're gonna we're gonna do this in person. We're gonna do this. We're gonna do that like that is mania. Anyone can have a manic state of mind. Anyone can then go, oh, and I'll proudly tell you I take lurasiddone, which is La TUDA. It's an off brand version, and that is helping stabilize me as well as I had a cancer scare this past year. My white blood cell count was elevated from taking lithium. And then they're like, We don't know if you have cancer, from diabetes, from substance abuse, from this or that. So I just went, Okay, so I think, you know, when you're 28 and you're a young mom and you hear you might have cancer, you're gonna start acting a little crazy, right? So I'll throw it back to you, Scott,

Speaker 1 22:51
I don't know. I'm exhausted. Hold on a second. You mentioned the podcast early on, right? So, yeah, it's been valuable for you.

Em 23:00
It has, you know, but I, I was really bad, like, I hated listening, right? Like I was in, I was active in the groups and, like, what's really important is the message that comes. Like, you have moderators, you have people who have sent me episodes, have given me advice, because when I got back on a pump, well, I dealt with insulin, pooling and tunneling. I've tried pumps and I hated them. Like, if I could only have one technological advance in diabetes, it would be a bionic pancreas that worked, or a Dexcom sensor, or this or that. So for me, like, I've rebelled my whole life with diabetes. Like I would go to a party during two excess and people would be like, are you diabetic? And I'd be like, nope, nope. I would lie. You know, I wouldn't want to listen. You know, even people, like in medical professions, they don't, they don't have any formal education and diabetes. So I'll throw it back to you there, like,

Speaker 1 23:54
if you didn't have the bipolar, yeah, do you think the drinking would be the same? Do you connect the two of them?

Em 23:59
Yeah? Because once I stopped drinking, like, this time around, I said, Well, I had been in I had been sober before, right? Like, I was sober for my pregnancies, anytime I'd see a positive test, and I would always know, very early on, I know my body very well, so as soon as I'd see a positive test, it'd be no more booze. And then, like, my ex drank a lot when he wasn't with me, and I was like, You know what? I'm doing the hard work here, you know, I birthed a 10 pound baby for you, and you, you know, held money over me. You lorded power over me. And then I realized this year, like some things about myself, like I'm bisexual, but I've never dated a woman, you know, he was always like, you're just diabetic, you're just bipolar, you're just a loser, you're just a psycho. And words hurt right? Like, if you stay with a man for just under four years, and every day when he has no formal education, he's telling you you're a loser. Well, what are you going to think of yourself? Young women shouldn't be with men or anybody for that matter. Matter that don't fill their cup up, right? Like, mothers, especially, we can't be pouring from empty cups. Like, how am I going to be driving my kids around if my blood sugar is low, I don't I pull over and I eat the Tim bits I got them, which are Canadian? Don't

Speaker 1 25:14
worry, I know what Tim bits are. I've talked to a lot of Canadians. Let me ask the question again. I think we might do a fun thing where I ask you the same question till we get an answer. Okay, do you think that drinking is a result of the bipolar?

Em 25:28
Yeah, like, I definitely like that is how I got diagnosed, right? Because when I came home from university that summer, my grandfather had died the year before in Ireland, I sat with him in a home run by Catholic nuns. And I just remember being like, where the did all the time go, you know, he was a sergeant major for the Dublin infantry. So for me, what did we do? We went to the local it's called the quarry house in Dublin, and we got drunk. And everyone paid for us to get drunk. Like, I remember sitting next to his open casket, and me and my little cousin went out and got high because I'm like, I don't want to look at that my dead grandfather. I want to numb this pain, right? So for me, I think, like, people misuse and abuse words like this, but like, I'm proud to say this, I don't give a blind what people think of me? You know, I'm Irish Catholic, if that doesn't make you an alcoholic and then an addict, I don't know. What does

Speaker 1 26:26
em Do you think that drinking is a direct relationship to bipolar disorder? Yes? Why?

Em 26:35
Because I think like self medication, right? What do diabetics do? We take insulin, we check our blood sugars, you know, I I love when I run into a young girl with diabetes, and she's like, arguing with her mom, and her mom's like, No, you can't have that ice cream. And then she's like, Okay. And then, you know, I see them part ways in the mall, and then what does she do? She's with her friends, and she's eating like, a kilo of ice Okay.

Speaker 1 26:59
Hold on. Stop, stop. Though, how does the drinking self medicate the bipolar? So

Em 27:04
if I was not taking medication, right, I would be buying a bottle and drinking that entire bottle, because

Speaker 1 27:10
it finishes sentence, because it what does it do for you? It self medicates. Does it slow things down? Does it No,

Em 27:20
it speeds things up, and then later it slows things down, which

Speaker 1 27:24
is valuable? What is this? Is the slow up or the speed down? Valuable for you both,

Em 27:28
you know, because what is bipolar disorder? It's called manic depression. So I have days where I'm like, at the top of the roller coaster, and I'm like, Oh, this is like a carnival.

Speaker 1 27:38
Then the drinking adds to the party. Exactly, okay. But then

Em 27:42
when the party's over, what are you left feeling holy. I don't know what my blood sugar is. I blacked out. I woke up in a field, and I have no idea what happened to me. And all my friends are laughing, right? Who are not diabetic?

Scott Benner 27:54
Are you hyper sexual at any point during it? Oh,

Em 27:57
always like I would party. And you know, I didn't care who I was sleeping with. When you grow up chubby, if a guy gives you the time of day, you're like, Okay, you know, you have no standards for yourself. Like, it breaks my heart when I see little chubby girls and they're like, you know, I'm fat. And I'm like, What is fat? You know, one man is going to love your body the way it is. Another one's gonna say he wouldn't touch you with a 10 foot pole. And you know what? Who cares?

Speaker 1 28:25
So did you end up with guys that sometimes liked you and sometimes just didn't like you? They were just there for you, for for easy sex. Oh,

Em 28:33
my God, I'll never forget being in university, and I was in an all girls dorm, and I was I had a really good friend. She had just moved there. She had been sexually assaulted in her old dorm, and I moved out of a dorm due to bullying. And so, you know, what did her and I do? Well, we drink, and then we'd be on these apps, you know, like Tinder, bumble, whatever it is. And then I remember, I invited a guy over, and we were intimate, and while we were in the middle of having sex, he literally said to me, you are not pretty enough for me to be seen in public with. So I literally said, Okay. I stopped it, and I remember crying and going to her room, and she came and freaked out on him. She screamed at him. She was drunk. And then what did he do? He just went, Okay, and he went home and then messaged me and said, Well, I have Asperger's, so I can say that, but I'm like, Okay, why? Like, do you think if I went around and said to a type one diabetic, I'm not giving you a juice box because I'm diabetic, would that make me a good person? No. So this is my whole thing with it is like people use anything to numb pain. They use medication, they use insulin, they use sex, they use drugs, they use alcohol. And this is why, when I talk, I start to ramble. But if I was manic, I would, literally, I would just start rapping for you, because that's what I do. I use music as therapy as well.

Scott Benner 29:50
What kind of rap would I be hearing? Oh, you'd be hearing

Em 29:53
my mom by Eminem, or forever, or, you know, like I really. We love Jelly Rolls music, and I was going to go see him in March, but I ended up trading his concert tickets with someone because I knew if I went to a concert as a health care worker and seeing people in active addiction and drinking, then I would do that right, because I got to work my life one day at a time. How long has it been since you've drank something? December 5 at midnight was the was the last time. Yeah, it's been two months.

Speaker 1 30:26
That's awesome. What are some benefits you've that you've noticed from not drinking, I'm

Em 30:31
more alert. You know, I went back to the gym. I knew how, like, I was trained in crisis intervention in a Midland Ontario emergency room. So when a man started to threaten me, like my ex husband, you know, he tried to break my wrist, and that's okay, it was just a sprain, so I had the courage to drive and go get an x ray, like old me would have just had a drink over that. You know what I mean,

Speaker 1 30:55
good for you? Like, yeah, you lost a bunch of weight recently. How did you do that? Yeah,

Em 30:59
you know, after my wedding in October, I was, like, heavily overweight. I was eating in excess at night. You're a mom, you know, you're not eating through the day. I would be working eight hour shifts, and then I would literally be, like, chugging iced coffee, eating donuts. Not to get political, because I'm kind of apolitical. But if

Speaker 1 31:16
you can go from donuts to political, I'm gonna be so impressed. Go ahead. What are you gonna say

Em 31:21
the day Trump got elected, I was smoking a cigarette outside the back of my work place, crying, and then I bought all our female co workers donuts because I said, What the is going on with the world, that a black woman cannot be president, and that we have to go back in time, and we have to look at women who were silenced with money, with power, with sexual assault, and all my friends were like, you don't look okay. And I'm like, I'm not okay, but it's fine. Everything's fine. That was my life. Like, literally going through the worst of my life, I'd walk into a room and smile because, you know, I know how to act like I'm okay, but like in sobriety, No, nothing's going to be sunshine and rainbows. That's not life. Life is still going to happen, whether or not I think

Speaker 1 32:06
I'm confused about something, yeah, what are you confused you were married four months ago, but you're not married anymore.

Em 32:12
No, I never certified the marriage because it was an abusive relationship.

Speaker 1 32:16
So How long had you been with this person before you had some sort of a ceremony?

Em 32:19
We met on a dating app in january 2021 which was COVID lockdown. So I don't know how it worked for you guys in the States, but for us, like police were like, you're not allowed to leave your house. And then people would be like, we met up. I drove out. He was about 40 minutes south of me, and he had no car jobs. So I was like, perfect. I'm gonna leave my kid with my mom and go for a drive. And then here I was with this man, you know, he met my son shortly after, and I was like, Okay, I'm gonna watch this man like a hawk, because I don't around when it comes to my kids. Like, as a parent, I think you probably feel the same way, like, if your daughter called you and needed you, you'd show up, right? So for me, when I met him, I was like, you're gonna get a job, you're gonna get your license, you're gonna get a car. And we were like, on and off for four years. February 10 would have been our four year anniversary, but we had a messy separation before that. So the things that I thought, yeah,

Speaker 1 33:18
do you ever stand in front of a priest or a judge and get married. We

Em 33:22
stood in front of a wedding officiant in a park in Barrie in October.

Speaker 1 33:27
That can't count. It's Canadian, so like, yeah, all right, so you Okay, so you've you tried to make a more of a commitment four months ago, but now it's over, and he's the father of your the baby you lost, is that

Em 33:42
right? And my second Yeah, and my last shot and your last

Speaker 1 33:46
shot. Listen, this is gonna sound like a dig, but it's not. I'm so impressed with myself that I know that I can't begin to tell you. I swear to God, I'm like, Oh my God, I am following you, yes. And being serious, like, do you know like talking to you like this, yeah, if I'm really gonna listen, it's incredibly difficult.

Em 34:05
Oh, it's, it's difficult for me. Like, you know, my brain is like, just like going through a grocery list of what I need today, like this is what women do, no,

Speaker 1 34:15
but, but, but listen. You started with, I met a guy. He met my son soon after, you know, Scott, that I protect my kids because you must also, I don't even know, like, where that leap came from. Yeah. And then it just, you are. It's, oh my God, I feel like I'm on one of those roller coasters, the jerks you the left and the right, then up and then down. And I'm actually holding on, like, I swear to God, talking to you is like riding a bull. I'm gonna name this episode eight seconds. I'm naming this episode eight seconds for sure. Okay, oh, my God. Does anybody remember the Luke Perry movie eight seconds where he was a bull rider? Anyone at all? Yeah. Thank you. Thank you. I'm calling this episode eight seconds now, but at the same time, I don't think you know you're doing this. Yes, but you were giving such a great insight into your like your situation, and how your brain works, and how your life, you know, functions because of that, that I think that anybody who is listening to you and knows someone who is in a similar situation as you, I think this could give them a ton of compassion, because I know people like you in my personal life, and I watch them eventually be discarded by even people who love them, because it's just so fcking exhausting

Em 35:32
it is. You know, my parents, after my ex tried to break my wrist, my mom kicked me out of my childhood home. I've been living in hotels, and she's just told me she'd pay one for me for a week. You know, I had to meet my son with her in a grocery store, and I gave him Valentine's Day gifts. We gave out boxes of Smarties to some kids, and then my mom's like, I already got him Valentine's first class. I said, I don't care, because that's what I do as a mom. I'd show up for my kids pouring from an empty tank, I'd be like, I need to get gas. And they'd be screaming in the back seat that they didn't get enough Tim bits that day. You know, I have brought them to meetings to support my addiction, and I've done that sober, and I have been uplifted by strangers and thinking I'm alone in this world. I'm not alone, and if any type one diabetic who listens to this Wednesday feels like they're alone. Pick yourself up and dust yourself off, because by all accounts of like, how I used to drink and do drugs, I should be dead if

Speaker 1 36:31
I spoke to other people in your life. Yeah? Like if I talk to your mom or that guy or whatever, yeah, people you've worked for, do you think they'd say, No, M sweet. She's just got problems, and this is how they manifest. Or do you think they'd just be like, do you think they'd have a completely different view of you than you have of yourself? Absolutely,

Em 36:49
my mom is pretty harsh, like she was like, You did this to yourself. You chose to be with a man who assaulted you for four years, who drained your bank account like, that's what my mother said to

Scott Benner 37:01
me. She ignores the mental illness part of it, yeah,

Em 37:03
like she's like, You need to go back on lithium. And I'm like, I'm 28 years old. When I was diagnosed, I was still an adult, and I walked myself into that emergency room, and I was drunk and high, and I laid on the floor, and then I woke up in holding when I got brought by local municipality to the emergency same emergency room, my blood sugar was 20, and that emerged doctor that used to buy me coffee. He was like, just tell me you're high. And I'm like, No, I'm not high. I'm sober. He formed me so that means they put me on a 72 hour hold, and then I stayed under a lockdown in solitary confinement for a week. So I was alone in a room surrounded by people in mental health crises, being denied insulin, denied food, eating hospital food, like, if that's not enough to make anybody seem crazy, I don't know what is.

Speaker 1 37:53
What's the answer? Like, you've been in that situation. You've worked in that situation, right? Yeah. And you know, you know who you are. You know what your ailments are. How should they have treated you? Like, what would have helped you? You

Em 38:06
know what? I don't live in the yesterday, like, basically, my mom should have understood. Like, I told her I went to get an x ray on my wrist, and she just went. That was your fault. But we grew up Catholic, Irish, right? Like my nanny. She's 90 years old, sitting in Dublin, Ireland, right now she's still kicking. She had seven children and a bunch of miscarriages because there was no birth control back then. I actually tied my tubes after this 10 pound baby. I said, I'm not doing this to my body again. And you know, my ex, he wanted three kids. I came from a three kid household, and so did he. But I said this like life is too short. How am I going to be a career woman? How am I going to go back to school and have two kids who are young and they need me, and we're

Speaker 1 38:48
going to do it again. We're going to do it again. What could they have done for you that would have been valuable? They

Em 38:53
couldn't have believed me. They could have protected me. They could have supported me. Because

Speaker 1 38:58
in that moment, it doesn't matter if you're making like, if your brain's making something up or not, it doesn't matter, right? You're still feeling it was a lie. Yeah, wish it was right. You're still feeling it the way you're feeling it.

Em 39:09
And feelings are valid. You know, my little guy just got diagnosed. He's six, with ADHD, and I tried to put him on medication, and now my parents are trying to withhold that, but last time I checked he was in my sole custody. And when I go to a court of law and we go through Crown Prosecution, because that's what's happening, and I'm proud of that, all the facts are there. I know every officer's name my dad would call, God bless him, with his dementia, and he goes, she's attacking me with needles, my four millimeter needles that are enclosed in my purse.

Speaker 1 39:41
So if you're gonna go, do you have to go speak for yourself at some kind of a hearing?

Em 39:46
Yeah, it's gonna be virtual, which is great, because I teach patients how to use technology. So when I get frustrated with technology, I stop and I ask for directions, or I write it down, or I use my wits. Yeah,

Speaker 1 39:58
may I I'm gonna suggest that you make us think. You know, that says stay on topic and put it in front of you, because Absolutely, I'm gonna write it down, yeah? Because I I asked you what they could have done for you, and five seconds later, I was in Ireland with your grandma,

Em 40:11
yeah, because she would be disappointed in her daughter, yeah.

Speaker 1 40:15
But I don't even know how we got to that. And what could they have done for you? My mom, them this my grandmother, like Bob, like, I'm telling you, like, if you go in, if you do that, I don't think they're gonna let you have the kids if you do that.

Em 40:28
No, for sure. Like, but I stay active in my program. You know, I live in love and service. I do what I need to do to stay sober. Because, you know, when you're arrested with a broken wrist or a sprained wrist, and then you get released immediately. Well, most people would have ended up in a bar, right?

Speaker 1 40:46
Well, no, I wouldn't have, but I don't have your problem. My point is like, is the lithium the answer?

Em 40:53
I'm under physician care, and I take Latuda, so that's the lithium is not the answer, because lithium actually elevates the white blood cell count, but if someone is prescribed lithium, that's none of my business. That's called the privacy and health. Stay

Speaker 1 41:07
on you. Stay on you. Okay, so the lithium is not, not an answer for you. That's awesome, like you have the Latitude. Latitude is helping you with with some of the bipolar stuff. What would help? What would help with this piece of it? Believing in women, no, no, it ain't gonna help you because I'm believing you, and trust me, we're not getting we're not getting anywhere proof,

Em 41:24
proof in a court of law, the facts I have, the videos, I have the text message, that

Speaker 1 41:29
stuff's not going to help them. Think that you're going to be a good caregiver.

Em 41:33
But it's not up to my parents. It's up to a court of law to decide. I understand

Speaker 1 41:36
that, but what I'm saying is, is that if you go in there and you're a little slower and thoughtful and stay on topic, I think that's going to be really valuable for you. Absolutely.

Unknown Speaker 41:46
I'm going to write out points, yeah,

Speaker 1 41:49
because what we like, what we've gone over here in the last like 45 minutes, is that whether you're a lovely person or not, it can be difficult for people who are not struggling with the things you're struggling with to see you for who you are and how you feel, because I think they're just reading what you're giving them. You know what I mean? Yeah. Well, let me

Em 42:07
tell you three things that I've done in my sobriety since my parents have turned their back on me. One, I've bought coffee for homeless people and given them cigarettes. Two, I've supported people in early sobriety that have told me they needed help. Three I've called wellness checks on friends who were on heavy drugs, telling me that they didn't think their life was worth living. I showed up for them, and then they showed up for me in turn. But as a mother, you know, we don't show up for people. Are

Speaker 1 42:36
you telling me that you've been successful at looking out for friends and you think you could be successful looking out for your kids. Absolutely,

Em 42:43
I've never left my kids. I picked them up every day from school until they were removed from my custody. Temp, No,

Speaker 1 42:50
you were so close to completing that thought though, like that was good because you, you numbered it, and that really helped you, because you, you said three things, then you gave me three things, and I felt like what you were trying to say was, look, I've helped people in my life. I'll be a good caregiver to my children. And you were just, you were a split second away from getting it out, and then you pivoted,

Em 43:10
right? Well, that's how my brain works, right? It doesn't work that

Speaker 1 43:13
way. Yeah, no, I understand. I'm just trying to tell you what I think the reality of that hearing is going to be, yeah, yeah. Because if you put me in charge of judging you, and I didn't know anything about you or anything else. I just was hearing you for the first time, I'd be like, I don't know, this lady's got type one diabetes. She's fighting with bipolar. She hasn't been drunk in two months, which is awesome, but it's not exactly, you know, two years every question I'm asking her, I end up in Dublin with her 90 year old grandmother.

Em 43:39
Well, that's why, you know, like, I'm Catholic, so, like, I have faith, you know, I have faith in myself when people, you know, bipolar, like I I've been on off medication too, and it's I still go and attend regular appointments. I go to my medical doctor, my family doctor, and, you know what, the right people believe in me. And

Speaker 1 43:58
those are good points. Then those are the points I think you should make. Then, you know, like, seriously,

Unknown Speaker 44:02
because witnesses, right? Well,

Speaker 1 44:05
I mean, people who have seen you do these things over and over again and feel confident that you'll do them with your kids. Well,

Em 44:11
a wise man, his name is Adam, once said to me, the definition of insanity is doing the same thing and expecting different results, right?

Speaker 1 44:21
Yes, but what does that have to do with what we're talking about? Tell me

Em 44:25
everything. Everything is a diabetic, you know, like I in sobriety, I remember everything. So then I want to talk about everything, but I don't have to talk. I can stick to the point which is what I'm going to do on my court date. I

Speaker 1 44:39
wish you a ton of luck. I hope that goes your way. Thank you. Yeah. How old are your kids?

Em 44:43
Evan will be seven in October, and Owen's almost two. What does Evan like to do? Everything. He loves McDonald's. He loves shopping. He loves Pokemon. He loves sports. I got him into soccer. I. Paid for him to take skating lessons, and he was too afraid to let go of the bar. What kind of a Canadian can't skate? I mean, I can skate, I just can't stop. So I just slam into the boards like Sidney Crosby, and then I do it

Speaker 1 45:11
up. I can't do either. But what does he enjoy in school? He loves

Em 45:15
math, which, like, you know, I love math. I love reading, writing. He loves it, too. And I got him into speech therapy, because since he was three, he's had a speech impediment assessment. And, you know, I used to translate for him. You know, I speak sign language, I speak French. So people can listen to this and say whatever they want about me, let them.

Speaker 1 45:35
I don't think anybody's gonna say I think, I think you're very brave to come on here and share your stuff like I really do. I've asked a number of questions I haven't gotten answers to, but, yeah, I have one that I'm really interested in. So like, stay with me. Okay, here, let me ask it this way. Tell me the three things you did to lose weight. I

Em 45:52
started eating like, six meals a day, grazing snacks instead of, like, eating all my calories at night. I stopped smoking weed, because, you know, when you get high, what are you going to do? You're going to get the munchies at two in the morning, and then you're eating like an entire bag of chips. I lost some dead weight, which was my ex husband. That's what I did

Speaker 1 46:13
when your mental burden with that relationship went away. That also helped you maybe not to overeat as much and and that helps you lose weight. He lost 70 pounds. Yeah,

Em 46:22
it's awesome. 70 pounds. That must have felt great. That whiskey weights hard to get off. You know, we got engaged at a whiskey tour in Dublin in March, and then I planned the wedding, and I spent about, I want to say, 40 grand on this man. In the last few years alone, I haven't seen a penny back from him in child support or anything my parents are paying for my children, and I drop off gifts. And, yeah, that's, that's the reality of my life. Don't be sorry. No, no,

Speaker 1 46:49
I listen. You deserve compassion. And it's a it sucks, like it really, listen, I don't care what you're struggling with. You know, a boy, don't need to take, you know, advantage of that. And then, and also, like, listen, it would be nice if they would say, like, you know, all right, I'm, I'm having, you know, some easy sex with this girl who called me from a nap, but I don't need to get her pregnant, you know. I mean, like, somebody could try a little bit, you know, I'm saying so somebody

Em 47:17
could pay their own bills. You know, he was driving around my cars under the influence, and he didn't even have a license. Scott, he was lying. He lies a lot, yeah, and I don't lie. I blow whistles, and then I know when to stop. And then so I like to do lists. I like to write. But you know when your right hand and your right hand dominant was snapped, and then you're putting Voltaire and extra strength on it, and you're still sober. Well, there's a song by Nickelback. It's called Never again. It's about domestic violence and substance abuse. Because as I got more sober, he got worse, and, you know, we work in the same place, so I started telling women how he treated me, and they were shocked. They said he always sings your praises. I said, that's in public, but behind closed doors. So that's why I tell women in domestic violence situations, open the door, yell for help, call someone you trust. Don't make the same mistakes that I did, because you will have regrets. But we don't have to live in regrets. We can find the solution every day. And if you can drink responsibly, power to you, I cannot. Most diabetics can't if they don't know when to

Speaker 1 48:24
stop, right? You don't think type ones can drink responsibly. I think

Em 48:28
they can. I went out to dinner with co workers. I had a glass of wine, but then when I was at home, I was drinking the bottle alone, right? And they're like, Oh, you had a good night. You only had one glass of wine. And I'm like, hahaha, yeah. Because what do we do in addiction? We lie, you know, we say I'm fine, and then people are like, well, what are you doing? And then we sit in a room full of anonymous people, and you know, that's not something to be discussed about either, right? Like my program is not allied with anything. So for me, I show up because people have told me, people have kicked me out. They've told me I'm nothing. They've called me crazy and delusional. And to them, I say, keep coming back.

Speaker 1 49:06
Well, listen, I've only heard you say one crazy thing, and I'm gonna bring it up. How the hell do you think you know who your blood sugar is by your pulse. I

Em 49:14
can tell when your pulse slows down. My blood sugar is usually high. When my pulse is rapid, it's usually low, but not every time, not every time, but it's also like, heightened emotion, right? So if I'm like, in the middle of having sex, and then, you know, I'm exhausted after well, do I have a low blood sugar, or did I just do a physical activity? Right?

Scott Benner 49:33
Exhausted? What are you doing?

Unknown Speaker 49:37
Not to be discussed on this podcast. You

Speaker 1 49:41
know, when I get out of the harness and I'm exhausted, let me just tell you something, yeah,

Em 49:45
when you, when you uncuff the pink, fuzzy handcuffs, and you turn off Sabrina Carpenter, or the sex playlist you were playing, you know, I love Sabrina Carpenter,

Speaker 1 49:55
girl from the from the Grammys, the little like blonde girl me

Em 49:59
every. I know, yes, the little blonde girl, because she was an actress,

Speaker 1 50:03
I don't think I could have sex to that song. I'm just saying, Well, you know,

Unknown Speaker 50:07
Scott, we all have our vices.

Speaker 1 50:11
Oh, my God. All right, I shudder to ask you this question, but is there anything we didn't talk about that you want to

Em 50:16
if there is a young type one diabetic out there, and I don't care your gender, but I'm the only one we did the genetic testing, so I'm the only one in my family. I'm the black sheep. If there's a young girl out there with diabetes and you know she's being bullied or letting people tell her that she's nothing, or that you know her mom is making her feel like she has to eat in secret. Be bold. Live your life. Live your life on your terms, and understand the consequences of your actions, because life is short. And as diabetics, you know we can live our whole lives and we never know. When you know complications arise, you keep trucking and you keep your chin up, you keep your head up. And my Both my grandfathers fought in the world wars, so I wasn't raised to submit to powerlessness. I was raised to have hope, and that's the message I want to give today to anyone out there who needs it. I have

Speaker 1 51:08
a statement and a question go. My statement is, is that I've decided that I'm not calling the episode eight seconds. I'm actually calling the episode eight seconds to Dublin. Hey, I like that. It's literally an awesome title. It might be my favorite. Whatever I prove my question is, is that I'd like to understand, if I could how the podcast, like, this thing that I've delivered to you, like, I want to know how it how it's helped you. Well, I probably should ask for you to tell me the five ways that it's helped you, but tell me how it's helped you. Yeah. So number

Em 51:38
one, when you grow up without technology, you kind of rebel against it when it fails, you know, ripping pump sides out, ripping sensors out that are bleeding. You know, taking a wooden spoon to a sensor because it got stuck. So the technological aspect of it, two the different opinions, because, like, it's not just like you and one other person sitting on a podcast chat, and you have different people every day. You have different expert those are important too, because opinions are important, but the right opinions are what matter. Three would be the Facebook group. Now I do. I haven't been as active in it as of late because, you know, I tend to argue with people and be that keyboard warrior. One mom's gonna say, I eat vegan and I don't eat anything like this. Another mom is going to say, oh, we'll need protein and we food restrict. People can do whatever they want, but they should never tell their kids to eat disordered. Because what are kids going to do when they're not with you? They're going to abuse insulin. They're going to but that's not for me to say either you need what you need four would be the education and the differences in that. Like, I hate when I hear people say, wow. Like, I was taking 60 units of Tracy, but I take about 36 to 40 now. People are like, Wow, you're so fat. Well, yeah, when you had a 10 pound baby and you got a lot of belly fat, you need all that insulin, or it's not going to take you through the next level. And then I want to

Speaker 1 52:57
second for a second, you're doing great, but I'm going to conversate with you for a second. Have you tried a GLP medication for weight because, yeah,

Em 53:04
I was on Metformin, but I have no gallbladder that came out in my last pregnancy.

Speaker 1 53:09
No, not the pills that get injectable, that go for weight, step bound. Or

Em 53:13
you guys use ozempic heavily in America, but in Canada, you can only get ozempic for free if

Speaker 1 53:19
you're type two diabetic, there's no version of it for weight loss, not that we would have to pay for it. Benefits. Don't want to cover it. The reason I bring it up is I have an episode. It's not that old. Now, a mom came on to talk about her kids bipolar. Yeah, they found, I'll find it for you. They they found a number of things that helped, yep, and they were able to lessen a lot of the bipolar symptoms, but then the kid went on a GLP for weight, and then it ended up being valuable with some of the bipolar stuff too.

Em 53:57
Well, that's what I take the medication, as advised by my psychiatrist. But let me tell you, I was in with my Endo, and we were trying to do ozempic. We were trying, I was on Metformin. Oh, my God, I could not poop like Metformin was insane. It made me feel so sick

Speaker 1 54:13
if they ever try anything like that again. Yeah, you need to add, like, a little magnesium oxide to your day, and that should help. Good point.

Em 54:19
I'm actually taking zinc and magnesium, and I take daily vitamins because I have a type one diabetic friend. She's a personal trainer, yeah, so we always check in that way. Specifically

Speaker 1 54:28
magnesium, there's a number of different forms of magnesium, but oxide, specifically will help you go to

Em 54:34
the bathroom. Perfect. Yeah, we all need to poop. Yeah? They say

Speaker 1 54:39
everyone does it. Yeah. I wish I could find it here. I'm not finding it, but I'll, I will find it for you, and I'll get it to you.

Em 54:46
No worries. Cool. All right, you were pretty great at this. I'm pretty good at making statements. Scott, how

Speaker 1 54:53
do you feel when it's over after an hour of this? Are you tired by it? Is it invigorating? How does it feel? You know?

Em 54:59
Why? It's, it's tiring because, like, I'm an over share, right? You never know who needs to hear your message. But I, I think there's power in, oh my god. Like, I'll go hang out with a friend and then have coffee, and then I'm like, Oh my God, this was exhausting. Why? Because I don't like being alone, but I do like being alone sometimes, and I like to go to the gym and and talk with people who are like Jesus, I don't know how to judge you. Well, you know what? It's everyone judges. I'm Catholic. Thou shalt not judge, though. So I'll leave it at that.

Scott Benner 55:27
Well, I know you're Catholic because you told me 853 times.

Unknown Speaker 55:30
850 times. I'm just trying to explain. What do you

Speaker 1 55:34
think being Catholic has to do with some of the things that are happening to you? Well,

Em 55:38
my aunt was beaten black and blue for years, and then when my, uh, uncle, or sorry, my great aunt, so when he died, you know, his family didn't want a service, but she had one, because that's what Catholics do.

Speaker 1 55:52
But how does that impact you? How does that whole Catholic experience impact you? I

Em 55:56
think it's because I'm a bit of a rebel, but I have a cause now. So I advocate. You know, I bought a magazine about diabetes education, and I plan to give it to a police officer next time I see him, because you can't deny someone insulin.

Speaker 1 56:10
Are you telling me that being Catholic makes you an advocate? Hell

Em 56:13
yeah, it does. Because I'm half Irish, full throttle. All right, man. All right.

Speaker 1 56:18
All right. I'm definitely calling this one eight seconds to Dublin. That's all that. It's the best title of a podcast episode I've ever dreamt up. I

Unknown Speaker 56:26
love it. I approve signed, sealed delivery. I am

Speaker 1 56:29
the person who wrote butthole adjacent and, oh, I love it. The frozen urine of diabetes, I wrote both of those. And I think that frozen urine as I'm freezing in my car. No, I'm gonna let you go so you can turn your heater on, more than anything. Okay,

Em 56:43
that's what that northern Canadian attitude is for, Scott. But you alive when

Scott Benner 56:47
you're when you're the bloods freezing inside of you,

Em 56:51
slowing down, and you're like, ooh, but that's what the remote start is for. I got a 2025, CRV, which is a good car, but you're not as good as your car. You're just as good as your brain. It's

Speaker 1 57:01
awesome. All right, I'm gonna let you go. You were terrific. Thank you so much for doing okay.

Em 57:04
Thanks, Scott, you take care. Say hi to Arden. I will wish you all the best. Go test your blood sugar. You're very nice. All right, have a great day. Okay, take care. Bye. Bye.

Speaker 1 57:18
Dexcom sponsored this episode of The Juicebox Podcast. Learn more about the Dexcom g7 at my link. Dexcom.com/juice box. Today's episode of The Juicebox Podcast was sponsored by the new tandem Moby system and control iq plus technology. Learn more and get started today at tandem diabetes.com/juice box. Check it out. Earlier you heard me talking about blue circle health, the free virtual type one diabetes care, education and support program for adults. And I know it sounds too good to be true, but I swear it's free thanks to funding from a big T 1d philanthropy group, blue circle health doesn't bill your insurance or charge you a cent. In other words, it's free. They can help you with things like carb counting, insurance navigation, diabetes technology, insulin adjustments, peer support, Prescription Assistance and much more. So if you're tired of waiting nine months to get in with your endo or your educator, you can get an appointment with their team within one to two weeks. This program is showing what T 1d, care can and should look like currently, if you live in Florida, Maine Vermont, New Hampshire, Ohio, Delaware, Missouri, Alabama, Mississippi, Iowa or Louisiana, if you live in one of those states, go to blue circle health.org. To sign up today. The link is in the show notes, and please help me to spread the word blue circle health. Had to buy an ad because people don't believe that it's free, but it is. They're trying to give you free care if you live in Florida, Maine, Vermont, Ohio, Delaware, Alabama and Missouri. It's ready to go right now. And like I said, they're adding states so quickly in 2025 that you want to follow them on social media, blue circle health, and you can also keep checking blue circle health.org to see when your free care is available to you. Okay, well, here we are at the end of the episode. You're still with me. Thank you. I really do appreciate that. What else could you do for me? Why don't you tell a friend about the show or leave a five star review? Maybe you could make sure you're following or subscribed in your podcast app. Go to YouTube and follow me or Instagram. Tik, Tok. Oh gosh, here's one. Make sure you're following the podcast in the private Facebook group as well as the public Facebook page you don't want to miss. Please do not know about the private group. You have to join the private group as of this recording, it has 51,000 members in it. They're active talking about diabetes, whatever you need to know. There's a conversation happening in there right now, and I'm there all the time. Tag me. I'll say hi if you're living with type one diabetes. The after dark collection from the Juicebox Podcast is the only. Place to hear the stories that no one else talks about, from drugs to depression, self harm, trauma, addiction and so much more, go to Juicebox podcast.com up in the menu and click on after dark there you'll see a full list of all of the after dark episodes. Hey, what's up everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way. Recording, doing his magic to these files. So if you want him to do his magic to you, wrong way. Recording.com, you got a podcast. You want somebody to edit it. You want rob you.

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#1507 Who Is Randy?

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Phoebe and Randy’s meet‑cute at the gas station morphed into a mid‑40s tag‑team battle with blood sugars: hers since age 12, his brand‑new after pancreatic cancer left him with type 3C diabetes.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Speaker 1 0:00
Hello, friends and welcome back to another episode of The Juicebox Podcast.

Unknown Speaker 0:14
Hello, my name is Phoebe. Hi,

Unknown Speaker 0:17
I'm Randy.

Speaker 1 0:19
Please don't forget that nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com. AG, one is offering my listeners a free $76 gift. When you sign up, you'll get a welcome kit, a bottle of d3, k2, and five free travel packs in your first box. So make sure you check out drink ag one.com/juicebox to get this offer, when I created the defining diabetes series, I pictured a dictionary in my mind to help you understand key terms that shape type one diabetes management. Along with Jenny Smith, who, of course, is an experienced diabetes educator, we break down concepts like basal, time and range, insulin on board and much more. This series must have 70 short episodes in it. We have to take the jargon out of the jargon so that you can focus on what really matters, living confidently and staying healthy. You can't do these things if you don't know what they mean. Go get your diabetes defined Juicebox podcast.com go up in the menu and click on series. This episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter. Learn more and get started today at contour next.com/juice box. The episode you're listening to is sponsored by us. Med, us. Med.com/juice, box, or call 888-721-1514, you can get your diabetes testing supplies the same way we do from us. Med, this episode of the juice box podcast is sponsored by the twist A I D system powered by tide pool that features the twist loop algorithm, which you can target to a glucose level as low as 87 Learn more at twist.com/juice. Box, that's twist with two eyes.com/juice. Box, get precision insulin delivery with a target range that you choose at twist.com/juice box. That's t, w, i, i s t.com/juice.

Phoebe 2:48
Box. Hello. My name is Phoebe.

Unknown Speaker 2:51
I am Randy.

Speaker 1 2:53
Are you guys married? Did you meet each other at the Piggly Wiggly and you just decided to be on a podcast together? What's going

Phoebe 2:58
on? A little bit of both. But we are, in fact, married, but we did meet at the local gas

Speaker 1 3:03
station. Wait, seriously, sort of, yes,

Phoebe 3:07
I was working at the local gas station, and one day he decided to bring in a bunch of bottle returns in the state we're in. That's a thing. And I was forced to count how many bottles he was returning, and that was the first real memory I have of interacting with him.

Speaker 1 3:22
Wait, is that Vermont? No, we're in Michigan, Michigan. I was so close. I was going off an episode of The West Wing where somebody was running for president had to go somewhere to the recycling thing to meet people. Was that New Hampshire? I don't remember. Now, let's not get down that road. So we don't usually do multiple people. So there's got to be a good reason, right? So Phoebe, what's your deal?

Phoebe 3:43
So there is a very intentional reason why Randy and I are both here. I have been a type one diabetic since I was 12. I'm significantly older than that now, and I believe that Randy and I were put together on purpose because two years ago, he was diagnosed with pancreatic cancer and is now also a type one diabetic.

Speaker 1 4:02
Randy, her pancreas was so strong it came and got yours. It did. It did. My God, how long have you guys been together?

Phoebe 4:10
We have been together since I was 17. We are coming up on our 20th wedding anniversary. Very soon. Phoebe,

Speaker 1 4:18
are you trying to act like you're old when you're 37 is that? What was going on a second ago? I know

Phoebe 4:23
we we are significantly older than that. I'm in my fort. We are both in our 40s.

Speaker 1 4:28
Oh, that is significantly older. Brandy. Are you much older? Same age? Well, we'll be the same age. I just turned 45 yesterday. Oh, happy birthday. Oh, thank you. Yeah, it must be a little more special after getting through what you got through, I would imagine, yeah,

Randy 4:45
yeah. I didn't think I'd be here, but I'm still here, kicking it and doing well, awesome.

Speaker 1 4:49
Okay, so we'll start with, where are we going to start? Let's think about this. I didn't know this was happening, so I have to reconfigure my thought process. I'm going to start with. Of Randy, and I'm gonna ask what it was like initially dating someone with type one. And how did she tell you about it? Well,

Randy 5:08
she hid it from me for the first, I'd say, five, six months. Wow. I had no idea she was diabetic. And then my real first memory of finding out that she was diabetic, she ended up hospitalized because of her thyroid, throwing everything out of whack as well.

Scott Benner 5:28
Hold on for you. What was the thought back then?

Phoebe 5:32
Well, you know, I was diagnosed in the early 90s, and so I was on multiple daily injections and hormones. Make that really interesting as well. And so the my day to day was not anything remotely what it's like today, as a lot of your other people that have been on your podcast have mentioned, you know, blood sugars took a minute or better to result, and you had to have this clear light underneath the blood sample in order for it to result. It was very laborious and no fun at all. And

Speaker 1 6:05
was I not clear? Are you dodging my question? No, I'm trying to answer. Like, what happens when you say to yourself, like, I'm gonna start dating this guy. I'm assuming, in the beginning, you don't know if he's a no nick or whatever, so you're like, I don't need to tell him my all my business. Yeah, at some point he paused at you, and you don't recoil, and now you're going out again. And it happens again and again and again. Do you get to a point where you're like, Oh snap, I've held this back so long, I don't know how to say it.

Phoebe 6:31
Well, I think that was a lot of it. And actually, one of the things that I was thinking about before this podcast, and some of the dynamics I see in in the online and the Facebook groups, and then even some of the conversations that you have with other people. It dawned on me yesterday, actually, especially when I was first diagnosed, a lot of people had a lot of very passionate opinions about things that I should be doing. Some of them were honest and genuine and maybe had good thought behind them, but others were very, very wrong. And so at some point, I just decided, you know, I'll take everybody's opinion with a grain of salt, and it wasn't anything I really advertised. Actually, was definitely not anything I advertised to people that were around me, unless they really had to know. But I didn't have a lot of lows. I didn't have any major symptoms that displayed themselves. I just did never think it was important to tell him, at least that in the beginning. Is

Speaker 1 7:25
it crazy to think that you told him when you realized you were in love? It definitely

Phoebe 7:29
came before that. When I was 18, I had Graves disease, and I underwent ablation of my thyroid with radioactive iodine, and in the 90s, there were, were no medical records, and doctors didn't do a good job of consulting with one another. And so I went from having a very, very overactive thyroid having a very under active thyroid, and when I had the ablation, I didn't even have a follow up appointment scheduled with anybody. You'll be alright, see you. Yeah, that was that was basically it. And honestly, I remember the moment when I was holding the two capsules in my hand in the radiation department, and I said, What are the chances this will work too well? And they said all 100% I said, well, then what do I do? And the technician said, well, you'll just take a pill every day. And I didn't even give it another thought. I was following the advice of what I thought were knowledgeable practitioners at the time. And so then, of course, shortly thereafter, my thyroid was not active at all, and then that caused, you know, hypoglycemic events and hyperglycemic events and all sorts of things. So that was, that was the hospitalization that Randy was talking about

Speaker 1 8:48
all that finally. Okay, so you So fair enough. You didn't tell him on purpose at that point,

Phoebe 8:53
correct? I didn't tell anybody other than people that were very, very close to my right, you know, circle. So

Speaker 1 9:00
now you guys been together a long time, so this doesn't feel weird, but Randy when you realized that that wasn't a thing she was willing to share at that point, how did that strike you? Were you put off by that? Or did you understand the brand new twist? Insulin pump offers peace of mind with unmatched personalization and allows you to target a glucose level as low as 87 there are more reasons why you might be interested in checking out twist. But just in case that one got you twist.com/juice, box. That's twist with two eyes.com/juice. Box, you can target glucose levels between 87 and 180 it's completely up to you. In addition to precision insulin delivery that's made possible by twist design. Twist also offers you the ability to edit your carb entries even after you've Bolus. This gives the twist loop algorithm the best information to make its decisions with, and the twist loop algorithm lives on the pump so you don't have. To stay next to your phone for it to do its job. Twist is coming very soon, so if you'd like to learn more or get on the wait list, go to twist.com/juice. Box. That's twist with two eyes.com/juice. Box. Links in the show notes, links at Juicebox podcast.com. 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 888-721-1514, US med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omnipod, the number one fastest growing tandem distributor nationwide, the number one rated distributor in Dexcom customer satisfaction surveys. They have served over 1 million people with diabetes since 1996 and they always provide 90 days worth of supplies and fast and free shipping. Us. Med carries everything from insulin pumps and diabetes testing supplies to the latest CGMS like the libre three and Dexcom g7 they accept Medicare nationwide and over 800 private insurers find out why us med has an A plus rating with a better business bureau at US med.com/juicebox, or just call them at 888-721-1514, get started right now, and you'll be Getting your supplies the same way we do. Contour next.com/juicebox 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 going to get more information. It's easy to use and highly accurate. Smart light 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.com/juicebox and if you scroll down at that link, you're going to 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 gen blood glucose meter. Do tell contour, next.com/juice box head over there. Now get the same accurate and reliable meter that we use.

Randy 12:47
I understood growing up, I've had multiple traumas and stuff like that. I was struck by a car, I was burned, so I had scars and stuff like that. I understood that some people didn't want to disclose some of that stuff and wanted to keep that stuff private. So I was okay with it.

Speaker 1 13:05
It's because, you know what it's like not to want to share everything with everybody, right? Okay, oh, that's really something. I appreciate you sharing that with me. So, Phoebe, let's go back a little bit. You're diagnosed a long time ago. Regular, mph,

Phoebe 13:20
yes. I started I was diagnosed, actually, because I wanted to be on the track team and I had to go get a sports physical, and I was still in glucose into my urine, so they discovered it in the urine sample. Prior to that, I had been pretty symptomatic for, I don't know, probably a couple weeks, getting up in the middle of the night and drinking an entire gallon of orange juice because I was so thirsty, which, of course, as I know now, that was the opposite thing that I should have been doing, but that was my brain was telling me that I should do. So I lost a lot of weight, and once we got the diagnosis, I had to go to the hospital from the doctor's office and do a glucose tolerance test. I don't know why that is important in hindsight, but they that was what they did. And when I failed the glucose tolerance test, They admitted me to the local community hospital for all of the education and how to do injections and such and hydration. And I was not in DK, but I was pretty close. I'm pretty sure,

Speaker 1 14:20
you know, you just made me realize we are old. We are I don't think anyone who's you know under a certain age would believe that in middle school, because I wanted to play baseball for my school, that I had to go to the nurse's office and stand in a line with 50 or 60 or 70 other boys who wanted to play baseball or do other things and track whatever in the spring, and we, one after another, went behind a curtain when a strange man fondled our balls and told us to cough.

Phoebe 14:47
That is exactly how it was. I have vivid memories of that. Yeah, of course,

Speaker 1 14:51
you do as you were saying. And I thought I bet young people are like shit to get a physical, like, like, they send me to my doctor to get signed off on it, but your doctor. Just goes, Ah, you've been here recently and they sign it, yeah, I was molested. Like, so, yeah, he didn't say anything kind to me or anything. It was just, like, no. It was, turn your head and cough, Randy. You ever get this? Yeah,

Unknown Speaker 15:11
I didn't even get dinner out of it.

Speaker 1 15:16
I know, right? Like, you expect a cheeseburger at least, or something, a tote sucker, something that's we call those lollipops here Randy. But okay,

Unknown Speaker 15:29
some Michigan thing. No, I just

Speaker 1 15:31
in the context. I thought we should redirect, right? Okay, so Phoebe, so you start that way. You have other issues I don't know about yet. So I

Phoebe 15:40
am now hypothyroid. I do have some slightly strange diabetic side effects. So I have necrobiosis diabetes, Filipino,

Speaker 1 15:51
if you've heard of that, I mean, just today I did go ahead. So

Phoebe 15:55
basically it starts in kind of a small area. Mine started on my right shin, and degradation or deterioration of the fat layer under your skin. And it's not generally painful or anything, but it does. It's prone to ulcers and injury pretty easily, and then through time, it spreads. So I have it on both of my shins. Now. It's it's ugly, but other than that, it's not really anything. So

Speaker 1 16:20
I don't want to burst your bubble. But as you were explaining it to me, I thought, oh, somebody else has told me about this. So is that localized, or does it spread? Yes,

Phoebe 16:28
it does spread over time. You know, I don't really understand the exact pathology behind it, but it has gotten bigger, but it's been, you know, I've been diabetic for 30 plus years now, so it's slowly progresses,

Speaker 1 16:41
and it's just in that spot, correct. Gotcha, okay? Oh, and I'm sorry, what's it called? Um, there's

Phoebe 16:48
a abbreviation that I always mess up. But necrobiosis diabetes, O, M, B, I'm going to assume the internet

Speaker 1 16:56
can figure out the rest of it. Necrobiosis

Phoebe 16:59
lapedica. Lapedica, yep, diabetic. Corum is another term for it. And LD,

Speaker 1 17:05
oh, also Lucky you. Phoebe, a rare skin condition. How about in your family? Phoebe? Is there other autoimmune stuff? Yep,

Phoebe 17:13
so my half sister is also type one. My biological mother was diagnosed late in her life as a type one as well, and went through the trying to give her metform And then those sorts of things, she was actually crashed or motorcycle in the median of an expressway, and when they picked up, she had really high blood sugar. So that was how she got diagnosed. And my biological fathers type two. Wait,

Speaker 1 17:39
so your mom is the parent you share with your half sister.

Unknown Speaker 17:43
No, actually

Speaker 1 17:44
really, hold on a second. Hold on a second you And holy crap. So your biological father, who has type two diabetes, has at least two daughters that we know of with two different women. They both have type one, and the woman he made pregnant to make you got type one later in life. Yes. Oh, Randy. I was kidding earlier, but she definitely up your pancreas.

Phoebe 18:09
There might be a correlation there, for sure. I think you're onto something, Scott, you guys are

Speaker 1 18:14
like little pancreas vampires or something like that, only you're not near me now, right. Do you know any other people Phoebe who have type one diabetes or problems with their parents?

Phoebe 18:28
Well, so funny. I was thinking in history, because I knew questions like this were going to come up when I was in middle school, the time when I was diagnosed, there were at least three other people that I know of, four other people that I just thought of another one, that were all diagnosed at the same time. Have

Scott Benner 18:43
you ever touched them? Perhaps your patient?

Unknown Speaker 18:50
Yeah, you might be onto something.

Speaker 1 18:52
I want to be clear, because there are at least 10 crazy people listening right now. They're like, I heard this podcast today, and this lady, everyone she touches gets type one diabetes. So that is not, I'm just making that up. I'm just, I'm being facetious, but, but no, that's I mean, what a coincidence. It

Unknown Speaker 19:09
really was, like, amazing coincidence. Yeah,

Speaker 1 19:12
no kidding. My gosh, how's your pets? Pets are all fine, yeah, it doesn't transfer from humans to pets. Then, okay, well, that's good. Not yet. One day your dog will look up at you when you got me. Take me to the would you remember? What age did you start using, like a fast acting and a basal insulin?

Phoebe 19:34
So I started right off with a short and a long term insulin. I don't remember what brands they were, multiple daily injections right from the

Speaker 1 19:42
get go. Oh, you did not do regular mph then no. Oh, okay, I'm sorry. So you started right away with probably, like Lantis and Humalog, or

Phoebe 19:51
whatever was before Lantis, that one, actually, I remember when I started on that. So whatever the predecessor to Lantis was, like,

Speaker 1 19:59
you have a. Lot of different health issues going on, so like, Were your parents helpful with that, or was that all left on you to manage? Oh, as

Phoebe 20:05
Randy already kind of pointed out, and I, as I've been described by some of my friends, as fiercely independent. My parents were supportive, but I started right from day one as managing it myself. You know,

Speaker 1 20:18
30 years ago, they would have called you a pain in the ass, and today it's fiercely independent. Into battle. I think it's good, by the way. I'm glad that we've we've all grown, but I could just tell you that in 1975 my father and his friends would have been like, Oh, she's a pain in the ass, yeah, which not fair for people are listening, and I'm not saying it's a good thing, and, oh, my god, we're just having fun. You took it from them. You were like, I'll do this on my own. Yeah, yeah. All right. And did that work out well for you?

Phoebe 20:44
It did work out very well. Of course, being human and the processes of life, it didn't always work out fantastic. But as of today, I'm I don't even remember the last time I was hospitalized related to my diabetes. I still have all of my toes in my eyes, and both of which were threatened that I would lose them at some point in my life when I was first diagnosed. So I'm very happy about that.

Speaker 1 21:07
Yeah, and so, well, they set the bar very low for you that, like, if

Phoebe 21:11
you could, there was not really a bar, it was just a low, flat shelf called the floor, I think,

Speaker 1 21:16
no kidding. And that was diagnosis that you got that pressure, not throughout your life, okay? Yeah. And

Phoebe 21:22
actually, my very first endocrinologist did not enjoy pediatric or young people diabetics, and he was not a nice person at all, and I dreaded going to see him, and he was always shock and awe and intimidation were his main tactics. So didn't have a great start in the endo

Speaker 1 21:41
world. Did it work on you? Or did it have a reverse effect on you? It definitely

Phoebe 21:45
had the reverse effect on me. In it and I got tried to get rid of him as quick as possible, but he was the only endo in our area that was accepting people so especially of my age, so I had to put up with him for a couple years. Okay,

Speaker 1 21:58
I'm sorry, it sucks. Yeah. Do you make it to a pump adventure? Are you MDI now? Nope. So

Phoebe 22:04
I'm Omnipod and g6 running in auto mode. And actually, as a result of, I don't want to give you too much credit, but credit where credit's due. After starting to listen to the podcast, my a one C's in normal range for the first time in my life. So, oh,

Speaker 1 22:19
good for you. I also love the way you preface that, like, like, Listen, I don't want to give you all the credit, joking aside again, you should not like, I really see myself as a person who just like, I'm like, here's tools. This is how they work. Like, you got to go do something with them. I didn't do Yeah, I tell anybody who comes to me privately and says things like, Oh, my God, you saved me, or you did this. I'm like, No, you did it. You know what? I mean, like, You did all the hard work. It's not easy,

Phoebe 22:47
well. And you know, I think that the best part about the podcast for me is the fact that my whole life, I've had people coming to me from a position of authority and saying, This is what you must do, or you shall do to take care of your diabetes. And the podcast and your community has really given it from a peer to peer or a knowledge standpoint, and I think that's really what reaches your audience the most. At least it does for me. You know, having somebody, having a peer that says, you know, hey, this really sucks, is pretty powerful. Yeah,

Speaker 1 23:20
I agree. I really do. I think people learn in different ways, and they're engaged in different ways as well. And like, I can see there's times when I'll put up, like, there's an episode that went up this week with, I've been talking about a lot this week, but I had a pretty big impact on me. So with Ryan, who had neuropathy, or, excuse me, uh, retinopathy. And, you know, literally lost his sight, and then had to have surgeries to get it back. And and now has not had that problem since he found the podcast and started listening to it. And there's this, you know, kind of thing that goes on in the background where people will reach out to me and say, hey, you know, like, you, I think you saved that guy's vision. And and, like, that's heady for me. So, like, I've got to, like, absorb that and, you know, sort it out. Because I'm, I don't, like, I'm not walking around, you know, in a cloak with my hands over my head going, everyone, it's me. I'm Scott. I've saved, like, you know, like, I don't, I have no feelings like that. But it's still, when it's put in your face, you think, like, is that really what happened? You know, is it fair for me to absorb it that way? Like, I go through all, like, a lot on this end. And then there are people who, like, just want management talk, right? Like, some people love that conversation with Ryan, and they get a ton out of it. And there are some people that hear that and go, Wow, tell me how to Bolus. Like, then those people want, like, pro tips and like that kind of stuff. And it's interesting, like, there was this moment where I thought that the podcast was just popular, and then I had to really look at it and recognize that there's portions of it that are popular with some people and portions of it that are popular with different people, and that. Some people listen to the podcast constantly and won't go into the Facebook group, into the private group. They won't go there. They don't care. They won't go and I'm like, oh, you should there's so much there. And then there's people who won't leave the private group and listen to the podcast. It's just fascinating how everybody's like, wants the information but needs it differently. So I'm glad it found you. How did it find you? Really

Phoebe 25:23
by happenstance, I do a lot of listening to podcasts, and one day I just came upon it and started listening to it. And when we were going through all the Randy stuff and I was in the hospital, it was a lot easier to listen to stuff than it was to watch stuff on TV or whatnot. So spent a lot of time listening to it.

Speaker 1 25:42
Awesome by accident. Roy, I appreciate that you that you found it, and I'm glad it helped you. Randy, what were your first inclinations that something was wrong? Oh, I'm

Randy 25:51
a paramedic by trade, so I was on the ambulance and between Mount Pleasant and Midland, say it's only 30 minutes, I couldn't go that whole trip without having to use the bathroom. And I'm like, well, that's just weird. No matter how much I drink, you know, I'm like, Man, I'm still thirsty. I'm still thirsty. All them years of being in medicine and being around Phoebe and, you know, never put it in my head, or maybe I was just in denial. I finally took my blood sugar, and then I told my boss, I'm like, Hey, I gotta leave. I gotta go to the doctor. And then that's when they told me that I was a type two diabetic. About 14 months later, I was on the ambulance again and had severe abdominal pain and almost like chest pain. It was like very diffuse across the bottom of the diaphragm, like a tight, constricting band. And when I got to the hospital, we did a 12 lead EKG to check out my heart make sure I wasn't having heart attack. We did some enzyme test and blood work, and found that I was in having a pancreatitis. And then to the end of 2022 I started having abdominal pain all the time, chronic diarrhea, fatigue, all sorts of weird symptoms. And then I just figured that this was the new norm. We've done lab work, colonoscopies, you know, anything you can imagine, and we couldn't find it. And then my doctor and Phoebe were like, maybe it's actually time we started doing some imaging and looking inside and seeing what's going on. And then they found, I want to say, the first time term that they used was a lesion on the pancreas. So we were told that we needed to follow pancreatic lesion protocol. So we ended up going down to the U of M and didn't endoscopy er CP, which is where they put a tube down your throat and Bailey, basically ultrasound from the inside, and they placed a stent because on the inside of my pancreas, all the ducks were pretty much clogged with IPM, and which, if for the lay person, is fish eggs or tapioca pudding, inside of all the ducks that were blocking all of the digestive enzymes, they said that I was pre cancerous, and said that this always turns into cancer if we don't do anything. So Doctor Cho, who's one of the best in the state of Michigan, he was the top guy at U of M to conduct the surgery, and by the time he finished, I want to say I was in surgery for nine and a half 10 hours. We started out as a Whipple procedure, and he said he was just going to take enough of the pancreas, but he couldn't find any clear margin so it can became a complete pancrea. And the result of that, I lost my spleen because there was no place to attach. That also got rid of the gallbladder because there was no place for that to go. So it's like the pyloric saving Whipple, but with the complete pancrea splenectomy, COVID systectomy, we're all done at the same time.

Speaker 1 29:10
What are the impacts Randy of losing your spleen? Well, I have to be very, very

Randy 29:14
cautious around anybody who's sick and being on the ambulance, anybody with a respiratory disease or anything like that. My other crewmates and co workers kind of shield me from some of that. So if we walk in and somebody's got a known thing like COVID or norovirus or RSV or anything like that, they'll have me sit outside and wait and tell they get out so we're not in a temp find area, but I wear a mask on all of my patient interactions, you know, to help protect myself as well. But it's been interesting.

Speaker 1 29:47
What's the spleen do? I'm blanking on what it does,

Phoebe 29:50
basically the graveyard for your immune system, so all your old red blood cells and such go and get reabsorbed in your spleen. Yeah.

Speaker 1 30:01
So then what happens? Nothing. Instead of that happening, like, do you take medication? Like, do you like, how does it, how do you replace its function? Or, can you not? You can't. Okay,

Randy 30:13
yeah, it's just caution. So, like, my white blood cell count is going to be continuously elevated because of it. And then, what about the gallbladder? The gallbladder is just one of those things that it's kind of like the appendix. It can be there it cannot. So, like, I have trouble with greasy or spicy foods now,

Phoebe 30:35
okay, yeah, AIDS and digestion of food, yeah. So

Speaker 1 30:38
spleen, filtering blood, storing blood, fighting infection, supporting the lymphatic system. Gallbladder stores bile, releases bile, aids digestion. Oh, geez. And we know what the pancreas does. If I just asked you, how has your life changed without those three organs? Like, what's the thing that jumps to your mind first? Well, I've

Randy 30:57
never been a great patient to begin with, being in the healthcare field, remembering to take my meds. I have to take what's called pancreas after each meal to help with digestion. Remembering to take those in a timely manner mid meal. I usually have to take three of these, like giant horse pills to help with that you get any depression from it, not really more anxiety from when I was going through chemo than anything.

Speaker 1 31:27
Yeah, yeah, I would imagine, yeah. I want to ask you about that, but I gotta tell you, Randy, before we get to your chemo, and how horrible it is. I want to just say that the most shocking thing about your story so far is that you were at work on an ambulance. Thought you had to leave because you were sick, and they didn't offer you a ride. That's their whole job. No, they gave me a ride. Okay? I was like. I was like, did they really make him drive to the hospital? Like, because that's their whole thing. No,

Randy 31:51
no. Every, every time that I've needed to go to the hospital, one of my bosses have always jumped on the truck and been a part of it, and give the other paramedics that work with me a hard time because I'm a very hard IV start. You know, I'm just

Speaker 1 32:05
saying it wouldn't be really if they wouldn't take you to the hospital, as long as I was like, that's really terrible. They had

Randy 32:11
me drive the ambulance to the hospital for them, they're like, we'll go with you drive.

Speaker 1 32:15
It's like an Uber that you drive. That's awesome, sponsored by Medicare. When they come to the conclusion, like, this, is it, you have to have this procedure. Did they call you pre cancerous? Why do you end up with chemo afterwards, they

Randy 32:30
called me pre cancerous, and then when they went in two months later, when we finally did the surgery, I ended up being in stage two with both extra can and endocrine cancers. So I also got both types of cancers. Initially. They usually do just like the adenocarcinoma, Sonoma or den of carcinoma, but I also had the extracurric carcinoma. On top of it, one out of every four patients is likely to make it through five years without the chemo, but 75% die without having it. So like, Well, I've been patient zero throughout this whole thing. You know, anything that could go wrong or had a complication, I ended up being that patient. Okay? So I'm like, let's just do it. How long did chemo last? It was scheduled for six months, I had a reaction to my first treatment plan, which was full fair knocks. They cut for short. They call it 5f, U. They call that the no joke chemo, because it's so hard on the system I would go in for, it's usually scheduled for six hours in the chair and then 46 hours on a home pump. I would have staff that came in at the same time as me, and that would leave before me from my first two treatments, because it was so hard on my system.

Scott Benner 33:50
Hey, did you get the bone pain? I

Randy 33:52
had bone pain. I ended up looking like an alopecia patient at one point. I think it was my third treatment of the gabapentin, or not gabapentin, I'm sorry, the other treatment that I had, I lost all my hair. I had no eyebrows, no eyelashes, nothing. I had a pretty good beard going at the time too. So that come out and you get the restless legs, yeah, yeah. Got Russell flag that go away a little bit every now and then I'll get, like, a kick in the middle of the night while I'm trying to sleep. It'll startle me awake, but tremors in my hands. I still got some of those that are pretty residual. I had the beginnings of neuropathy, but treating that with B 12, and that's been pretty tolerable.

Speaker 1 34:36
Okay, and so what's your long term prognosis?

Randy 34:40
I just live every day, one day, one day at a time when I was going through chemo, they said that they put me in touch with a case manager said, we've got yelled, set up, you'll go on permanent disability afterwards. And I'm like, why? Like, if I can still stand up, I'm gonna go to work. They're like, nobody goes back to work. After having pancreatic cancer, I'm like, Well, I'm different,

Scott Benner 35:02
and you've done that. Yep,

Randy 35:05
yep, the place that I work at now has been phenomenal. They sent me to school to learn how to be a dispatcher. When my short term disability ran out, they brought me back into the dispatch center, which is only two people. I would sit in a room locked in there with that other person, and I'd wear a mask, and they'd wear a mask. And, you know, while I was on chemo and nobody could walk in or out, we had our own little kitchenette and bathroom and everything, so I didn't have to go wandering through the halls or anything like that. That's

Speaker 1 35:35
nice of them. Yeah, Phoebe, what's it like when, when your your spouse

Phoebe 35:39
gets sick like that. Zero out of 10, wouldn't that recommend? Are you

Speaker 1 35:43
having your own personal struggle with it, while also having one? That's the two of you.

Phoebe 35:48
Well, for sure, I also am a paramedic. One of the reasons I wanted to come on the podcast is because it's so important for everyone to be or have a good patient advocate and really speak up when you don't understand the thing, or even sometimes when what they're saying doesn't sound right. And when he was in the hospital, he was hospitalized after his major surgery for 18 days at the big university hospital here in the state, and I felt like I couldn't ever turn my back, because we had some amazing staff members, but we also had a few be member, be team staff members, and there were a couple of times where I had to step in and be like, you are absolutely not doing that. I just feel like I've had to, you know, always speak up and be his advocate. But it's not been easy. It's been pretty tough. Yeah,

Speaker 1 36:44
have you guys talked about death? Have you had that conversation? Well,

Phoebe 36:49
I would say death is a joke in our house most of the time. Career side effect is it's something we've dealt with for a lot of years with other people, but having a realistic expectation of what it's going to be like at the end. I think is good, but, yeah, we've definitely had some long conversations about the end Randy. Do

Speaker 1 37:08
you go you have, like, meaningful conversations with family and friends beyond Phoebe, like, do you do the rounds? Or are you so busy trying to get better that you don't have time for that?

Randy 37:19
I talk to everybody. I feel that everybody that wants to talk to me has made it a point to call me every day or text me. You know, some of my family members are going through their own struggles right now with like, my brother in law's got cancer right now. So we we keep in touch and discuss things like that. I think everybody knows my side of it. As far as you know, I'm good with whatever happens. You know, I know where I'm going. Phoebe knows that she can just light the pine box on fire and just let it sizzle in the backyard if needed.

Speaker 1 37:54
But she's gonna push you out in the Lake Michigan, but we're doing a Viking thing. It's gonna be awesome. There you go. If you're listening closely, my whole vibe has shifted because, like, you know, I'm sitting here thinking, like, everything I know about cancer is through my mom, you know, like, and I stopped myself from asking you to describe that bone pain to me, because I wanted to know what she was going through. And I thought, that'll just derail this. If I, if I ask you that question, everything else that happens to us happens slowly. If you're lucky, right? You die slowly you get old, slowly you get fat, slowly you get like, everything happens slowly. Cancer is like, wow, something's living inside of my body and it's eating me, and we're gonna try to kill it, but everything we know how to kill it with doesn't really kill it as good as it needs to be dead. It's an infestation. You know,

Randy 38:44
it would always make me chuckle. It was one of the few things that I joked about going through chemo, because I was trying to be sensitive to everybody else that was going through it in the room that we were in. Because, you know, not everybody has the same sense of humor that I do, but they would gown up, double glove, face shield, face mask, everything, and then I would be sitting there in a T shirt with a med port, and they would be injecting poison straight into my veins. And I'm like, This doesn't seem right. Yeah. Thank

Speaker 1 39:15
you. Appreciate this. Yeah, Randy, like, when that's your best option, right? You know what I mean? Like, that's, that's the crazy, that's the crazy stuff. Like, you know, you're like, somebody's holding you hostage, and the only way I can shoot them is to shoot you too. And, you know, and then hopefully you'll make it through it. And, I mean, that's a position to be put in, you know, it's just uncommon in most other walks of life, yeah, and it's just on you, like, you're just, you're working one day, and you're like, I have a pain. And then somebody says you have type two diabetes. They probably gave you Metformin. You know what I mean? You're probably like, oh, I guess I'll have to stop eating pizza now. And then, you know, a number of months later, this is where you're at very quickly. Are your parents alive? Randy? They

Randy 39:55
are not both. My parents are deceased. My dad was a type. Diabetic. My mom's mother was a type one diabetic, really. So, yeah, I had it going against me, too. Your mom's

Speaker 1 40:09
mother was a, yeah, you guys don't have kids, but that's probably a good thing.

Randy 40:15
Yeah, we decided very early on that if we were going to have kids, we would adopt.

Speaker 1 40:19
Oh, yeah, no, I think it would have came out of Phoebe with an insulin pump in its hand. It would have hand. It would have been like, Yeah, I'm here. I'm so sorry to talk about like this. But does this change how you plan your life? Is it like you open your eyes in the morning and be like, Huh? All right, I guess we'll do it again. Do you plan out far like you have a vacation plan two years from now, or anything like that?

Randy 40:39
We got a vacation planned in August. Honestly, everybody at work, I tried to be super positive. I was pretty negative after being in Paramedicine for as long as I had been prior to cancer, my joke was always, you know, I started in EMS when the Dead Sea was just sick, and now I go in and I'm excited to go to work, and everybody's like, Oh man, I can't believe we're at work again. And I'm like, Dude, I get to come to work. This is awesome.

Speaker 1 41:06
Everything feels like I can't believe I'm gonna say this fee, because you listen, you know I'm gonna I feel like I feel like a douche bag, and the words are still in the back of my throat. But everything feels like a gift at this point, right?

Randy 41:17
Oh yeah, yeah, absolutely. And I try to be sympathetic to Phoebe and the fact that she was the rock star through all this, I just had to not die. She had to go and make sure that I didn't die, you know, even when I go to the ER now for something, she feels like she has to be there to make sure that they don't kill me by accident, you know, just

Speaker 1 41:36
Yeah, Phoebe. So we have this in common, like everything that went wrong for my mom I thought was because I didn't make the right decision.

Phoebe 41:44
Yeah, I don't necessarily feel that, but just keeping an eye, because I come from a medical education background, and I've worked with a lot of different clinicians over the years, I just feel like everybody makes mistakes, and nobody's perfect, and I don't have the bandwidth to allow the mistake to happen to him.

Speaker 1 42:03
Yeah, yeah. I mean, from the beginning, from when she was first sick, to, like, when we figured out what it was, then the steps you take afterwards, like, everything, like, gets it's always hindsight, like, right? Like, right? Like, there's something about that fight or flight that makes you see things as more, I don't know, doable than they might actually be. Like, I remember the first time I was with my mom in in the hospital, and I'm like, there's something seriously wrong with her. But they were like, oh, it's like, it's a, it's this, it's that, it's like, you know, it's all these things like, and you look back now and you think, like, well, she was this old. She was this was her situation. Like, nobody thought cancer. Then, like, we could just check, you know what I mean? And then, like, there was this time I took her to the emergency room, and we realized, you know, much later, that they imaged her without draining her bladder. First, they just couldn't see the cancer because they were because the bladder was so full, and then there were three weeks before we figured out to get back again. And like, you know, there's that party that's like, Did those three weeks cost her three years? Like, like, I don't know, you know, and maybe not like, I have no idea, but like, I don't know. It just comes back. It feels like once somebody's older and not even older, because Randy is a good example, right, man, like there's so much happening to you. You need someone helping you, right? Yeah, I'm assuming you feel like somebody put a pot over your head, hit you with a bat, took off the pot and went, do you want chemo? Right? How are you supposed to answer that, right? Well,

Randy 43:33
the other thing was going through the surgery and the amount of medications that I was on. What was it? Phoebe, at one point, I had like, 750 milligrams of morphine or something like that, in

Phoebe 43:47
a in a 20. No, it was not that much. It was 24 I don't remember the exact number, but yeah, I don't remember. In fairness

Scott Benner 43:54
to Randy, he was high, he wouldn't be able

Unknown Speaker 43:57
to remember. Yeah, he doesn't remember

Randy 43:58
any of it. Yeah, there were three days from the time that I went in to when I come out that I can't recall.

Speaker 1 44:05
Yeah, awesome, by the way, you finally get to try morphine in your life and you have cancer. I mean, it just what a bummer.

Randy 44:12
Yeah, my boss, who came down and took over for Phoebe to keep an eye on things so that she could get a break and go get a shower and stuff like that. She's like, you know, you never think that you ended up having to give one of your co workers a sponge bath. But here we are, and I'm like, what? Wait, that really happened. She's like, No, I'm just messing with you. I'm like, great mess with the guy that's high.

Speaker 1 44:32
Everyone you know, sponge you down while you were asleep. Awesome. She's Phoebe had

Unknown Speaker 44:38
a conga had a conga line. Yeah, Phoebe,

Speaker 1 44:40
maybe you are a little bit of pain in the ass. That was something there. It's awesome. I feel like I'm out of my depth even talking to you. Like, what should I be asking you guys about? You know what I mean? Like, what do you want to share with people?

Phoebe 44:53
Well, when I was listening to the podcast, actually, you had a call out for people that work in meta. Full education, which is when I originally sent the email to you. And I know that was a long time ago, but you are just so busy and hard to get a hold of. So

Speaker 1 45:08
on purpose makes me feel, uh, makes me feel important. No, no, you know, I just told somebody this the other day. Phoebe, I won't take you down this road too far, but the way I have it set up is if you have to sign up for something, and six months later do it, knowing that it'll take a further six months after that for anybody to hear it. Then when I turn this microphone on and you're here, you really want to do this, yeah, and that's how I make sure to get people who are really going to add something to the podcast. Because if it was just, like, if I just jumped on Instagram and I was like, Hey, who's not busy right now and wants to make a podcast 25 no nicks, would be like, I'll do it like, you know, and I believe I use nudnik Twice in an episode, but especially for you guys in Michigan, because, you know, like, three Jewish people, I think that must be crazier for you. You know what I mean? Like, I think making the process difficult makes the outcome better, yeah, for sure, yeah. So anyway, go ahead. I'm sorry.

Phoebe 45:59
Oh no, you're fine. So through the course of my life, I've had a lot of different jobs, and for a while, Randy actually the beginning of all Randy symptoms with his diagnosis of his pancreatic cancer, we're working at the same organization, but I was teaching new first responders and new em teas their craft, and I thought it was important to come on and kind of give that perspective from the caregivers side of things, so to speak. And I know you've had some other people on as well, but then also just to say how important it is to really speak up. And I know other people that have been on have talked a lot about just doing what the doctor said, and we talked before we even started today, about, you know, just doing what is told of you, but that's not always the best track. And certainly for Randy story, it's was absolutely the wrong thing to do, because the thing he didn't really tell you about is how much heartache and struggle in advocating for ourselves had to happen between his pan great Titus, which we still don't know why, although it's probably the pancreatic cancer, why he had that, you know, now three years ago or four years ago, they just said, oh geez, that we don't know why it happens. And then he started having all these symptoms, and like he had mentioned, you know, he just accepted it as a norm, and here I am at home banging my forehead against the wall saying, This can't be normal when you're spending, you know, three quarters of your day in the bathroom with abdominal pain, and then trying to talk to his care providers and his doctors and saying, Hey, we got to do something. And we had one GI doctor that he was seeing that started him on this. I don't even know what it was, but it was a suspension that he mixed up that was supposed to help with his diarrhea. He did it for a while, very religiously, and he went back and he was still having all the symptoms. And the doctors like, Well, gee, I don't know, just keep doing what you're doing. And it was so long and so laborious and so painful and emotional for us that it was tragic. And I just kept saying, This can't be it. This can't be this can't be the answer. Just keep doing what you're doing is not working. Nothing's changed. And so then, when we finally got the imaging results back with the pancreatic protocol recommendation, everything just kind of like we had taken forever to go, click, click, click, up the roller coaster Hill, and we were finally at the top of it, and then before we knew it, we were having surgery and had a diagnosis of cancer. And to your point, Scott, you know you go along every day, and all of a sudden, in the blink of an eye, it just switches,

Speaker 1 48:44
oh, that's like getting hit by a car, which also Randy knows about, like, yeah, yeah. It's terrible, like that. You have this experience in so many different ways, but of you know, like you're just moving along, doing your thing, and then all of a sudden, everything just changes,

Phoebe 49:01
yeah, blink of an eye changed. No kidding. Hey,

Speaker 1 49:04
this is gonna seem like a left turn, but you guys listen to the podcast your mom's house. No no. So I don't either like, I've heard it enough times. It's a comedian Tom Segar and his wife, who's also a comedian, Christina. Oh yeah, I've listened to him. Okay, so there's the opening of, I don't know anything about this. People who listen are probably like, I think it's probably a running joke in the podcast. But there's this, like, voice clip of somebody yelling, who is Randy? And I swear to God, for the last 51 minutes, I've got to fight that out of my head. While we're talking Randy's telling me about his gallbladder and his pancreas, and they're taking stuff out, tapioca pudding, eggs from fish. I don't know about like, just sounding like, goop in his pancreas. In the back of my head, there's this, there's this voice going, who is Randy? Is killing me. Like, not the same way cancer is trying to kill you, Randy. But you know what I mean? Like, you know. Right, right, right, right, right. Oh, my God. Anyway, cancer is a scourge. It's terrible. It is. Yeah, I can't tell you my beloved Philadelphia Eagles are going to the Super Bowl next week, as everyone knows, and I'm sure you're all happy for me. Thank you. And my brothers and I, we, none of us live in the same state. We have a group text that we use during the Eagles games. We've been very religious about it this year, texting back and forth with each other during the games, like, complaining about plays and like, why is he not under center? And, like, why you like, you know, stuff that, oh, stuff that, when it's happening, Arden goes, I can't believe you care about any of this, or think about any of this. And I'm like, my brother's making a good point. Like, I was like, but anyway, we get to the end of the game, the Eagles win. They're gonna go to the Super Bowl. And my middle brother, Brian, who my mom lived with at the end of her life for a bit, he's like, Oh, I'm sitting here like a bitch crying, because I the last time the Eagles, like this happened for the Eagles, like, mom was here and like, and I sat with her, and I watched the game. And then it brings the cancer thing up again, like, in everybody and that, we don't talk about it, but you know, everyone, like, just goes back through it all. Yeah, and if you're lucky enough, like, man Randy, I, you know, obviously I, if people listen like, I'm not religious, or I'd play for you, but like, I'll hold a good thought for you. If this all works out for you, you end up with a different perspective than other people have, which will be incredibly valuable for the rest of your life and for the people around you. But if it doesn't go your way, then it's all for freaking nothing, and it sucks, and then it's just you going through this shit, and there's nothing that anybody can say that'll it is just gonna be what it is, and you're gonna deal with it as best you can. Is that how it feels at times,

Randy 51:41
I guess. You know, I've got a pretty good perspective on things, you know, I'm 45 years old, you know, I've, I've outlived many things that have tried to kill me. To be that douche bag that you are every day is a gift, you know.

Speaker 1 51:57
So you already have, you have that perspective now, like now, I just, I'm saying, like me talking to you being, you know, I don't know, like, somewhat like Pollyanna about it, like I'd like you to live with that gift for decades. Oh, yeah, you know what I mean, and not just for you and just but because, like, what that knowledge will bring to you and how you'll be able to spread that to other people. And it's a, it's a very hard fought perspective. You deserve to be able to share it. I guess

Randy 52:23
I've actually had a couple of cancer patients that I transported, and I've got a new perspective. As far as like you were mentioning with your mom, and the bone pain, I can't even describe it to you, and how much it hurts babies heard me complain about it. I don't know. It's like everything is a giant ache. And it's like trying to explode is kind of the only way I can even fathom talking about it, is explaining to them what they're going to feel with some of the you know, if they're on either of the cancer regimens that I or the, sorry, the chemo regimens that I were on, you know, what they can expect, you know, and the importance of, you know, washing your hands. Don't let anybody touch your blood, because it's, it's basically like AIDS, I tell everybody, just think of it like you have AIDS. Don't let anybody touch your toothbrush, you know, keep your toothbrush in a different spot. Wash the toilet. Clorox wipes on the toilet seat and everything that flush toys. You talked

Speaker 1 53:25
earlier about anxiety that came with all this, like, has that gone away for you? Do you still have it?

Randy 53:30
I have it when I walk into that building. Now I have a new thing that we call scanxiety, because of all the MRIs and I've got to go get another pet scan and CTS and stuff like that, because you're always waiting for that other foot to drop when it comes to finding out, you know, if it's truly gone or not.

Speaker 1 53:51
Like a significantly worse version of getting your teeth cleaned? Yeah, I love getting

Randy 53:55
my teeth cleaned because I couldn't have it done while I was on chemo. Oh, I meant for people who are like, I'm

Speaker 1 53:59
definitely going to have a cafe. I'm going to get my teeth cleaned. To get my teeth cleaned out. I want to get my teeth cleaned because I'm gonna find out I have a cavity, like that whole family, yeah. PB, you know something you said earlier has been stuck with me the whole time, like it's been the only thing that's fought out the who is Randy in my head, when you said peer to peer, talking about people understanding your situation and how valuable it is. And then Randy basically just said the same thing, like, you know, like, I understand what that bone pain is like if somebody gets in that ambulance now, and I know they're going through chemo, I know they have that pain, and I know what it feels like, and I can be more, you know, a better servant to them in that situation through understanding. And then I just was mirroring it back in my head to the diabetes thing, because I stood in the shower this morning like repeating this thought in my head that I keep looking at all the conversations we have with people, and I keep doing this thing privately that I haven't figured out what to do with it yet, but like later, I'll take our conversation and I will feed it into like a. Into an AI model, and I'll ask it to pull out everything that Phoebe said that's valuable for people living with diabetes, everything that Randy said that'll be valuable for people who've had cancer, anything that I said that might have been helpful. What did Phoebe say the podcast did for her? And I get all this great feedback, and I'm looking at it, and I know there's a way to aggregate it and redeliver it to people to help them, but I can't keep it all in my head at the same time to figure out what that is. I'm standing in the shower and I'm like, I can't keep it all in my head. Like, why can't I wrap my head fully around what this is and how to red, disseminate it to people? And like, I'm like, I'm gonna figure it out. Because I want to leave a thing that people can go to and listen to or talk to, you know, ask questions of in the future, because I can see a world where, if you look at everything that happened to you Randy and everything that Phoebe had to stand in the background trying to figure out what's going on. And like, did that doctor just say something valuable or something stupid? Should I say yes to that or no to that? Like, if you had a prompt to go to, and you could go to that prompt and say, the doctor said this. Like, here's Randy's situation and here's everything it needs to know today, the doctor said this. What should I be agreeing with? What should I be leery of? Where do I have more questions? What are the pros and the cons of this? If you could have done that along the way, imagine how valuable that would have been. And now imagine if you had that for diabetes. I think there's a way to do that. I think there's a way to put a prompt on someone's phone or their computer where they can go to it and say, Hey, today I ate this. I did that. This happened. Here was the outcome. What should I have done differently? Yeah, and I think that those answers to those questions are in the conversations that we've all been having for the last decade.

Unknown Speaker 56:55
Yeah, I think you're onto it. I

Speaker 1 56:56
do too, but like, I'm not smart enough baby to, like, pull the whole thing together. It's just very frustrating because I feel like I'm standing in front of a puzzle and all the pieces are in front of me, and I can't figure out where to put them. And anyway, that's what I thought about in the shower today. Hopefully I remember to wash my hair. I think I did.

Randy 57:15
It's a puzzle which is a picture of grass, and you got to put all the pieces together.

Speaker 1 57:18
It's exactly how it feels. I know all of the pieces are here. I don't know how they go together, and I don't know how to redistribute them back to you as a picture. Like, that's the thing I'm trying. I'm gonna figure it out. It's and unless I, you know, wake up and I have, like, would you say, like, uh, pressure in my abdomen or whatever, unless something happens, I get hit by a car, you know? And then then you guys are all you're on your I did my best. It didn't work out. What do you want from me? I think I'm super close to it, like the idea. So anyway, the

Randy 57:55
very first podcast that I listened to you, Phoebe sent me, and that was a woman, I believe she was in Canada, and she was the first one that told us about type three diabetes, because she didn't have a pancreas either from the pancreatic cancer, yeah, and that's technically what I have, but it's just easier telling people that it's type one, because nobody knows about type 3c you

Speaker 1 58:19
know, other people have With 3c have said the same thing to me, like, like, it's just easier if I tell them I have type one diabetes, yeah. But they're also like, they seem worried that people who have type one through auto immune pathways will be insulted by that if they find out that that's not how it happened. I think that's a lot of like, you know, like, it's nice, but that just feels like people are too impacted by the Internet, if you know what I mean, oh yeah, no one's judging you. Just live your life. What have I not asked you that I should have both of you, please.

Phoebe 58:51
I think we covered everything that I wanted to talk about. I appreciate your time, and I hope somebody gets something out of this besides suckers and peeing in a cup. Well,

Speaker 1 59:03
Randy, anything that I've missed with you? I don't think so. Scott, I got a couple of questions for you. All right, Randy is Q A time. What are your questions?

Randy 59:10
How old was Arden, when, when she was diagnosed? And how old were you? Oh,

Speaker 1 59:14
that's interesting. I don't know how old I was. She was two. She had just turned two. She was probably sick on her second birthday, and we didn't know. It probably took us a couple more weeks after that to figure it out her birthday is in July, like we figured out at the very I know people are, some people really know the dates and the times, but like I end of August, I think we figured it out her birthday was, is July, 22 and but that's interesting. How old was I? I've never thought about it that way. So that was 2006 and I was born in 71 Okay, 8191 2001 2011 2000 Oh, I went past it. All right, yeah. 8191 2001 and then five more. I was 35 Five. Oh, my God, I was 35 No, that can't be right. I'm going to be 50 she's going to have diabetes for 20 years this summer, and this summer I'm going to be 54 so I guess I was 3034 Yeah, math, you know what I mean, yeah. So I was 34 and she was two. I'm a couple years older than my wife, so, okay, you were

Unknown Speaker 1:00:21
an adult when this all started going down, Randy, I'm not

Scott Benner 1:00:25
a adult today. I don't know what you're talking

Randy 1:00:29
about, but what I'm saying is you probably had a career going on at that point, and then you shifted, you know, and started doing all this research. How hard was it for you to do that?

Speaker 1 1:00:38
Randy, I was a stay at home. Dad, when that happened? Oh, really. Okay, I've been a stay at home, dad, since 2000 in January. I quit my job in January 2000 because my son was going to be born in February. Oh, okay, yeah, I haven't had to shave to be nice in front of people since for 25 years. It's awesome, by the way, none of you should have a job. Having a job sucks compared to not having a job. I just want to say that, but no, I was a really involved stay at home dad very, very involved. I used to joke all the time that I'm probably too overly shy of being able to give birth. I had this experience when my son was young. He was only, like, a year old. And I realized, like we'd made this decision, my wife was going to work, I was going to stay home. And I started realizing over that first year that she was having reactions to things that were very maternal, and my reactions weren't the same. And I thought, well, if my son's going to get robbed of those things from her, and she's being robbed of the experience. I'd be an absolute asshole if I didn't do my best to reproduce that experience for him and to share it with her. Like I just gave myself over to the process. Like, I don't know another way to say it, like, instead of being the person who was taking care of Cole, I tried to turn to the person who was raising Cole, if that makes sense, yeah. And so I did that for years, and then we decided to have Arden, and Arden popped out, and I was doing it again, like, you know, just going along. We were getting ready for a vacation. She was she had been sick recently, she had a Coxsackie virus, and then I went to visit my mom to say goodbye before vacation so she could see Arden for a couple minutes, like, on her lunch break or something like that. And afterwards, I took her out to the truck, and I changed her diaper, and her poop came out, but it was dry in these, like, I don't know, nickel size pellets, and I squeezed them, like, with, like, not with my hand, but through the diaper, and they crushed, like, uh, like, dusty. They were completely, completely dehydrated. And that got me to go back to the doctor. And he said, Oh my God. Like, she's still got Coxsackie. She shouldn't still have that. And I remember him saying, like, that doesn't never happen. You don't get Coxsackie. Get rid of it and get it back again. And then we went on vacation, and she, she was very thirsty. She had this giant drink in the car. And when we got to the vacation house, when I took her out of the car seat, I thought she had spilled the drink into her seat, because her I had to take the car seat out of the car and dump it out. It was that full. Oh, wow. And I thought she had taken this large drink and dumped it in there, but then when I dumped it out, I realized it was all like urine. And then over the next couple of days, while everybody else went to the beach, I stayed in the house with Arden, and I tried to take her out to the beach one day, and she stood in the surf and just stared. And I thought, like she looks like she's dead. Then later that night, we tried to take her out in kind of the nighttime air, she did the same thing. And probably 1112, one o'clock in the morning, everybody on this family vacation was up playing board games. I yelled across the room to my wife that I forgot to tell her that Arden's breath smelled weird to me that day. And she asked me how, and I said, I don't know it was like fruity or metallic. And then my wife's face just dropped off her skull, and she's like, she has diabetes. Then it just all kind of started from there. And then I became a stay at home dad to a kid and a kid with diabetes. Probably a year later, I started writing a blog. I just wrote the blog because I was trying to raise money for the JDRF, and I had gone so poorly that I thought, Oh, I'll use a blog to, like, get the information out. Because I was emailing people stuff. I was, like, nudging people through email and being like, you should donate to this. And here's why I learned about blogging, which was not a thing back then. I did that for a number of years. 2007 a blog was really popular for a long time. I think it was like 2013 I got a book deal to write about being a stay at home dad, and on that book tour, Katie Kirk told me I was good at talking to people. And so like a year later, when I really thought blogging was done, it was dead, as far as I could tell. Yeah, I thought, well, I'm helping people like, and this blog's gonna stop, and it's not gonna help people anymore. So I started a podcast because Katie Kirk told me I was good at talking to people. Oh, yeah, that's awesome. Yeah. Now this is its 11th year, so that's kind of the process that gets you to Phoebe going like, I found that podcast was really helpful. Yeah, which is why, when someone says it like that, you think, Oh, I wish they had all the context of how it's just here, you know what? I mean, like to do the thing, to do the thing for them. But in the end, it doesn't matter, like, as long as it helps, it helps. Oh yeah, yeah. That's it. Other questions, Randy,

Randy 1:05:35
how did you guys feel with your mom going through cancer?

Speaker 1 1:05:39
Oh, wow. Initially, like I said, it felt terrible that we just didn't figure it out fast enough. And then once we figured it out, I think my first takeaway was that how much her age mattered now, like before, she was just getting older, right? And getting older was part of being older, and she issues in her 80s, and it was like, it just is what it is. But when you have to fight cancer and you're 80, it's different, you know, like all of a sudden, like, what you aren't physically is super important. At some point, nobody wanted to help her. And I remember the helpless feeling that no one was going to help her, that she was just going to go into hospice and die, yeah. And then it just hit me one day, my neighbor's kid was a surgeon now, and so I texted him, and I told him what was going on, and I asked him if he knew anybody. And he went to medical school with a girl who ended up working in oncology. So he texted a friend and and said, Hey, my parents, neighbors, mother is in this situation. You think your guy would see him see his mom for us. And she's like, Yeah, cool. So I just got a favor. I got a text favor. And took my mom to the surgeon. He did all the looking at her, and he came into a room and he said, Bev like, if we don't do anything, you're going to be dead in a few months. And if we do something, you might live longer. I don't know. She's like, I don't know. He's like, you could die during surgery. Like, I have no idea. And my mom said, If I'm going to go down, I'm going to go down swinging, she said, in the room, and we set the surgery up. My brothers came in and it was COVID, so we basically had to walk into a hospital and, like, shove my mom forward in a wheelchair. Like, hope somebody came and got her, yeah, and then we went and sat in a diner and just ate breakfast and waited to hear that my mom died during surgery, because that's what it felt like was going to happen. And then she woke up and did exceedingly well. Went through chemo. Things were going great. She completed her task. She wanted to move out to Wisconsin to live the end of my my brother lived in Wisconsin for years, and she'd been around me and my other brother for so long. She's like, you know, this is the end of my life. I want to go like, be around Brian now. So she went out there with him and like, you know, it wasn't like a full year later, but we were all out there and she was dying. It just the cancer just came back. And, you know, the only good thing I can tell you, Randy, is that it came back so fast and furiously that she didn't know she had cancer again. I'm happy my mom passed away, not knowing that her cancer came back. Yeah, so, you know, because it was just, it was a lot to hear the first time. You know, anyway, you're a bummer. Randy with your questions, what else you got? I got

Randy 1:08:31
one last question for you. Go ahead. How do you feel? How do you think Jason Kelsey is feeling about this? Oh, if he retired too soon or not, you

Speaker 1 1:08:39
know, so in my house all week, we kept saying, like, can they just sign him for a game? Like, like, you know what I mean? Like, he, like, he won't play, but like, he just put him on the roster so he can get a ring, you know? And, um, and not only that, but both our, like, our centers hurt, and so the backup got hurt. And, like, I'm sure they'll be already two weeks from now. But like, there's a legitimate like, Could you maybe, if we just needed you for five or six downs here or there? Could you be ready? I'm sure it would kill him. He probably you can't stop and start playing professional football at those positions, right? Right? I don't know. Man, his life looks pretty good to me. I can't imagine he regrets anything. But once the push comes to shove, though, and the games happen, and I don't know how you do something like that and don't miss it every time you have to look at it, you know what I mean, like, what? How would you feel if, like, the if those people told you, like, don't ride that in that rig anymore, and then an ambulance went by, you'd be like, Oh, I missed doing that, you know? Yeah. So, yeah, I don't know. Man, I do believe this. I believe he's going to root for the Eagles during the Super Bowl, as we all should. Yep, yep. You

Randy 1:09:43
think people hate the Eagles? I don't think so. No,

Speaker 1 1:09:47
you should let try be an Eagles fan. It's awesome. Yeah, it does look like it, dude. It's so much fun to be from Philadelphia and just not care about what people think and yell and scream about football for a couple hours every once in a while. You guys are in Michigan. What do you have? Like College, lions, oh, yeah, that didn't work out at all. Right, we've got the wings. What do they say out there? They say, what the injuries, right? We would have been there, but it's the injuries. Yeah, you think that's true. We'll

Randy 1:10:14
get it next year. Next year is our year. That's what we say every year,

Speaker 1 1:10:18
dude, I listen. I gotta be honest with you, when I was a kid growing up, the lions were the patsies that showed up on Thanksgiving for the Cowboys to kick the shit out of Yep. So you guys have come a long way, honestly, yeah,

Randy 1:10:29
yeah. Then, you know, we have the Green Bay rivalry that we've always had. I

Speaker 1 1:10:36
will say this. I'm not usually critical of other people's decisions, because they figure it's hard to be anybody, but having a position player throw a pass at that part of the game when it's on the line didn't make any sense to me at all. No, it just was. It's just a bridge too far, like now it's not a time for a trick play. Now's the time for getting a couple of yards and keeping going. So anyway, Phoebe's like, I don't care about any of this, right? Lions

Phoebe 1:11:03
go Lions go lions. You've been

Scott Benner 1:11:07
told to say that

Unknown Speaker 1:11:11
dedication they lose every year, but we still like them.

Speaker 1 1:11:14
Yeah, listen, it's fun. We were sitting watching the game last week, and Arden goes, I'm watching like she looked up, and she goes, I don't understand anything that's happening. And I was like, not at all. I'm like, sit here for a couple hours, like, we'll explain it to you. She goes, No, thank you. So anyway, all right, you guys are terrific. Hold on, one second for me. Okay, yeah, okay.

Speaker 1 1:11:42
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Speaker 1 1:12:44
I can't thank you enough for listening. Please make sure you're subscribed, you're following in your audio app. I'll be back tomorrow with another episode of The Juicebox Podcast. My grand rounds. Series was designed by listeners to tell doctors what they need, and it also helps you to understand what to ask for. There's a mental wellness series that addresses the emotional side of diabetes and practical ways to stay balanced. And when we talk about GLP medications, well, we'll break down what they are, how they may help you, and if they fit into your diabetes management plan. What do these three things have in common? They're all available at Juicebox, podcast.com, up in the menu. I know it can be hard to find these things in a podcast app, so we've collected them all for you at Juicebox podcast.com, the episode you just heard was professionally edited by wrong way recording, wrongway recording.com. You.

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