Juicebox Podcast, Interview, Type 1 Diabetes Scott Benner Juicebox Podcast, Interview, Type 1 Diabetes Scott Benner

#1681 Bolus 4 - Cinnabon

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

Jenny and Scott talk about bolusing for Cinnabon.

+ Click for EPISODE TRANSCRIPT


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.

COMING SOON

Please support the sponsors


The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

Donate
Read More
Juicebox Podcast, Interview, Type 1 Diabetes Scott Benner Juicebox Podcast, Interview, Type 1 Diabetes Scott Benner

#1680 After Dark: Islet Cells and Second Chances

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

Robin’s unbelievable story—misdiagnosis, abuse, survival, and finally freedom from type 1 diabetes through a life-changing islet cell transplant. A raw, redemptive journey of strength, healing, and hope against all odds.

+ Click for EPISODE TRANSCRIPT


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

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

Robin 0:15
I'm Robin. I was diabetic, type one diabetic for 18 years.

Scott Benner 0:20
If this is your first time listening to the Juicebox podcast and you'd like to hear more, download Apple podcasts or Spotify, really, any audio app at all, look for the Juicebox podcast and follow or subscribe. We put out new content every day that you'll enjoy. Want to learn more about your diabetes management, go to Juicebox podcast.com up in the menu and look for bold beginnings, the diabetes Pro Tip series and much more. This podcast is full of collections and series of information that will help you to live better with insulin. The episode you're about to listen to was sponsored by touched by type one. Go check them out right now on Facebook, Instagram, and of course, at touched by type one.org check out that Programs tab when you get to the website to see all the great things that they're doing for people living with type one diabetes, touched by type one.org, nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan. I'm having an on body vibe alert. This episode of The Juicebox podcast is sponsored by ever since 365 the only one year wear CGM. That's one insertion and one CGM a year, one CGM one year, not every 10 or 14 days ever since cgm.com/juicebox the episode you're about to listen to is sponsored by tandem Moby, the impressively small insulin pump. Tandem Moby features tandems newest algorithm control, iq plus technology. It's designed for greater discretion, more freedom and improved time and range. Learn more and get started today at tandem diabetes.com/juicebox.

Robin 2:14
I'm Robin. I was diabetic, type one diabetic for 18 years.

Scott Benner 2:20
Robin, I can't wait to hear your story. So I looked at your notes this morning before we started, and I've tried to decide if I wanted to say this up front or not. It's the first time in a while that I've looked at something and thought, I wonder if this is a lie. Like, really. Like, so I'm like, I can't wait to, like, pull through it. Like, why don't you tell me about what you remember about being diagnosed? How old are you now? How old were you when you were diagnosed?

Robin 2:47
I am 40 now. I was diagnosed at 22 okay, and it is a wild story, and I was really shocked at actually, how common this happens to type one diabetics. But I was newly pregnant is first pregnancy, you know, never. Didn't have any idea what was going to happen, called an OB, because that's what my mom told me to do, was, oh, call the OB, get in with them. I get in and I'm probably maybe nine weeks pregnant, and go into a regular OB, do all your normal testing. There was sugar in my urine at that first OB appointment that they never told me about, but there was just sugar in the urine. You do the urine sample, you do the blood test and stuff that they do for your normal OB workout. Well, a couple weeks later, they call me at home and they said, Yeah, we need you to do a retest on a few things. And I said, Oh, okay, what's going on? They're like, well, I don't really want to tell you on the phone. And I'm like, now I feel like you should tell me, like, if you're calling me or telling me to retest, I'm gonna want to know what is happening. Yeah, so they tell me my HIV test came back slightly positive. And I don't think I've ever had to scrape my job harder off a floor. You were 2222

Scott Benner 3:58
pregnant. Yeah. Married, not married.

Robin 4:02
I wasn't married. Okay, been with my partner for quite some time at that time, but yeah, 22 and I was just like, um, what? And so I asked them, What do you mean? It's slightly positive? They said, well, they explained to me that it came back as positive on the initial screening. I forget what that a rapid screen, I think. And they said, Well, we have to send anything that's positive off for a confirmatory test. And I'm like, Well, what is that? And they said, it's a Western Blot. And I said, Okay, great. And they tell me that these bands came back positive. And I remember, I don't remember all the bands, but I just remember P 24 was one of them, and P 24 is the most. It's the first one that goes positive, I believe, on an HIV screen. So she tells me, I have to retest in two weeks. I said, Okay, great, and I come back. And in that meantime, let me tell you I was freaking out so freaking out about this,

Scott Benner 4:53
yeah, let me ask you real quick, Rob, you were like you, but you said you'd been with your partner for a long time. But did you think maybe I could have HIV? V or were you just like, was it just to freak out? Because, I mean, of the context of what was happening?

Robin 5:06
Well, there's a little bit of backstory with that. My biological dad was HIV positive, and he died when I was 19.

Scott Benner 5:15
Oh, so you had a ton of context for this. I see, all

Robin 5:18
right, well, I wasn't around him. That's the thing is, I didn't grow up with my biological dad. He was in and out of prison. He did drugs. It just wasn't a good situation. And my mom had left him like I was probably in third grade when she left him, so no contact.

Scott Benner 5:32
Was there anything going on in your life that made it seem reasonable to you that you could have HIV? Are you a drug user? You have a lot of sex any of the ways, not at all,

Robin 5:43
no, but at the same time, you know, I dated around and stuff, like when I was in high school. So I was like, I don't know. Maybe something crazy happened, okay, you know, I don't know. So I had everyone I ever even kissed get tested, literally, and everyone came back negative. And I was like, I don't understand. So in the meantime, we went and did another test, and it came back exactly the same way, only this time they called me and told me that there was two more bands on it that weren't even HIV related, but they didn't know what they were okay. And I was like, Okay, so I'm still panicking about this, because I'm like, I don't know. Then they said, Well, we think you're going through sero conversion, which is that you just contracted HIV, and it hasn't fully, I guess, developed, I don't really know. I did a lot of research. Then I was doing a lot of googling. Google was pretty new. Then actually, a lot of googling on this, trying to find out a lot of stuff. Ended up they called the CDC because I lived in a rural community. I guess I should have started with that up front. We didn't have a lot of obese and it was, I mean, my next two kids were delivered by a general practitioner that, yeah, very, very rural community, you had to drive 30 minutes to even get to an

Scott Benner 6:56
OB that, I thought you say to a road that would have been funny, no.

Robin 6:59
But you know what? If you want to go to something that wasn't Walmart, you had to drive 30 minutes, yeah, for everything. And it wasn't even, like a, you know, now you can go to the big Walmarts that have, like, the groceries and stuff. We didn't have one of those.

Scott Benner 7:12
No, you had, like, extension cords and light bulbs Walmart.

Robin 7:15
Yeah, exactly like that. It was super, super farm community, super role. We had some gas stations and McDonald's and Wendy's and the Walmart

Scott Benner 7:26
and faulty HIV testing. It sounds like too. Yeah. So how long does it take for you to figure out that you don't have HIV?

Robin 7:34
It took three months. That started, I think I went to the doctor in probably, like October. I just remember it was cold. It was start. It was fall. It was starting to get fall. It was Christmas Eve. They called me and told me I didn't have HIV and I didn't have hepatitis C, because the CDC told them they needed to do the specialized tests they do for nurses when a nurse gets pricked on accident. Okay, gosh, I can't remember what that was called now, but it was like a special test that looked for your viral load, I see, and it came back. It was all negative. They're like, you definitely don't have that. But it didn't matter, because I was so scarred by this, I never got another HIV test until my fifth kid was born, and they wouldn't give me my child until I took it.

Scott Benner 8:18
Is that a thing they tried to do every time you were pregnant. HIV test

Robin 8:22
is standard for all pregnancies. It's a law now that you have to take an HIV test during your pregnancy, workup. But because my other children, two of them were delivered by that general practitioner, so it wasn't like a big deal, my general practitioner is like, Nah, I know that it's an issue. We're not going to do it. I'm like, Cool. And then the fourth kid was delivered by an OB, because I had moved into, like, a larger town, and they didn't do general practitioners just didn't deliver. So the fourth kid was delivered by an OB, and they really just didn't they didn't think it was a big deal. But by the time I had a fifth kid, when I got to the hospital. It was a larger community, and they were like, You are definitely not nursing that baby without an HIV screen. Wow. So they took my baby and said that they were going to test my baby or they were going to test me, and I opted for the baby to get tested, and she obviously tested negative. And my OB even came in there and tried to talk me off a ledge, because at the time, my oldest kid was like, 13, and she's like, Look, if you've had untreated HIV for 13 years, you would be dead.

Scott Benner 9:29
So you kind of flipped out, because, not because you thought you had HIV, but But you didn't want this whole thing to start over again if the test should come back oddly.

Robin 9:37
Yeah, it gave me so much anxiety, and even at that time, they wouldn't diagnose me type one. So this was just like they didn't know what was going on. And that three months where they finally called me and told me that I didn't have HIV or hepatitis, that's when they broke the news to me on the phone and said, we have something else we have talked to you about. You've had sugars, like plus six plus five. In your urine every time you've been in here. And I'm like, what? Like, why would no one

Scott Benner 10:05
brought that up? Yeah, it's great. Okay, so you get through that three months of HIV confusion, and then now you think you have diabetes.

Robin 10:14
They didn't even tell me I have diabetes. They said that it was probably gestational or something. They were like, well, we don't really know what it is, but we can't really they told me. They could not tell me that I had diabetes because I was pregnant again. Rule setting

Scott Benner 10:30
for clarity, they found two issues with you. One, they were wrong about and the other one, they didn't bother bringing up exactly Awesome. How does that first pregnancy go?

Robin 10:39
I went back and did more labs after they wanted to investigate the sugar problem, now that they knew I didn't have HIV, but that was the only OB that I saw, too. That was the other thing. So that practice had six OBS, and with the whole HIV thing going on, they were like, Oh no, you only see this one doctor, and then you got sugar in your urine. You definitely only see this doctor. So I only had to see one doctor my whole pregnancy, which was rare kind of in that practice I see. So they had me come back in and they did all this, these labs, and they said, Oh, we're gonna go ahead and give you Glyburide. Glybride is, you know, type two medication for diabetes, because my sugar was super high. I don't even know what my a 1c were, because I don't know if they were testing that, to be honest, but they gave me the glybride, and I would just pass out. Sometimes I was passing out because it would just get high out of nowhere and just pass out. It was a crazy situation.

Scott Benner 11:30
Your blood sugar would get so high that you lost consciousness.

Robin 11:33
Yeah, sometimes, and then it would drop down really low, because you take the glybride and it's excreting or whatever it could, you know, out of your pancreas, and I would end up passing out from that too. So I had like, a finger monitor that you would prick your finger. I know at some points I would get up to, like, four or 500 and then I could drop down in the 20s after taking the Glyburide. But it wouldn't stay down like the glybride was. Just like eating Skittles. It might take you down. Maybe an hour later, you might go down, and I wasn't even eating poorly. So after about two weeks of taking Glyburide, they were like, We need to admit you, because there's something seriously wrong with your sugar. So I got myself a little one week stay and the ICU at our local

Scott Benner 12:16
hospital, okay, did they figure it out there? They

Robin 12:20
wouldn't label me as a type one, but that doctor came in and said, I'm gonna tell you right now, you most likely have type one diabetes. You are literally 120 pounds soaking wet, and we can't stabilize your sugars. They told me they were gonna put me on insulin, but I didn't know anything about type one at the time, so I was like, Nah, I can eat some salads. We'll be good. And they were like, No, you're gonna stay so they left me there in the hospital for like a week.

Scott Benner 12:45
How pregnant are you at that point?

Robin 12:46
Probably five, four or five months pregnant. Okay, when they finally figured it out,

Scott Benner 12:52
okay, yeah, eventually you just get put on insulin.

Robin 12:55
Yeah, they just put me straight on insulin. I was on Lantus and cumo Log during the pregnancy. And then it doesn't even stop there. The craziness after I had the baby, she she was fine. Everything was fine. Checked out totally fine. Didn't have any sugar issues. She did come out really big, like she was, I think she was 815 No, she was 812 that one was 812 so she was a big baby with a lot of Michelin Man

Scott Benner 13:22
roles. I like that. You have so many kids. You said that one, how many children do you have?

Robin 13:26
Well, I have five that are biologically mine, but me and my partner combined have seven girls. Oh, my seven girls. Yeah, we don't have any boys. Wow, we don't need any boys. I

Scott Benner 13:37
just like that. You were like that one, you know, there's that one, this one, the other one, yeah,

Robin 13:41
there's a lot of them, but you know what? With seven, you got a broke bestie every day of the week. So if you need to go to Starbucks every day, nobody's gonna tell you, No,

Scott Benner 13:52
my gosh, your house must be crazy. You know, baby comes out, it's bigger, probably because of the blood sugar, you imagine, right? Is that a thing they said to you, okay, and you're on your way living life. 22 still by the time you had 323. By the time you had her. And like, what's with the rest of your story? Like, how long do you stay with that guy? How many kids do you have with him? 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 mobi 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 mobi 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 mobi 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. This episode of The Juicebox podcast is sponsored by the Eversense. 365 get 365 days of comfortable wear without having to change a sensor. When you think of a continuous glucose monitor, you think of a CGM that lasts 10 or 14 days. But the ever since 365 it lives up to its name, lasting 365 days. That's one year without having to change your CGM. With the ever since 365 you can count on comfort and consistency 365 days a year, because the ever since silicone based adhesive is designed for your skin to be gentle and to allow you to take the transmitter on and off, to enjoy your shower, a trip to the pool or an activity where you don't want your CGM on your body, if you're looking for comfort, accuracy and a one year wear you are looking for ever since 365 go to ever since cgm.com/juicebox,

Robin 16:26
to learn more. So actually, right after that, I went back to work, and I was working at a Wendy's. I was like a manager at a Wendy's, and I went back to work at six weeks, and I would stand in this drive through, taking orders, and literally fall asleep. I was eating maybe 500 calories a day, because obviously, you don't want the baby weight, right? So you're like, trying to figure that out. I was freezing to death, like I will go home. It was in the summertime. She was born in May, so I went back to work in June, July. Freeze into death, literally wrapped in blankets all the time. Couldn't figure out what was going on. End up going to the hospital. And they were like, Oh, we don't see anything wrong. I probably went to my doctor, the urgent care, the hospital, probably 30 times, like no joke. And I told I had a physician's assistant was my doctor at the time, and she also treated my mom. And I told her about the diabetes thing, and she said, you probably have type two. She's like, you know you're a little overweight. I'm like, I just had a baby six weeks ago. And she's like, Yeah, and you're overweight, and your mom has type two, and you probably have type two, and it's no big deal. I said, Okay, great. And nobody was checking anything. My left arm went numb. The left side of my face went numb. I started having, like, all these crazy symptoms. I kept going back, like, panicking. I'm like, Hey, I'm going numb, and I don't even know what this is. And they were just like, yeah, you're fine. You're fine. You just had a baby. Just need to sleep, type of thing. I'm literally standing in a drive through falling asleep after sleeping 20 hours a day. They went as far as sent me to a neurologist that stuck needles in my arms and electrocuted my arms like to check the nerve endings, and they're like, yeah, the nerve endings are great. Before I finally went to a different doctor. Like, I got a whole new general practitioner that ran labs and said Your thyroid is really bad. Like, my thyroid level was 100 and something. And, like, even now, I maintain it at one, like, that's where my TSH typically is. So they end up prescribing the thyroid pills. And the same doctor, I told him about the HIV thing and what went on, he was fresh out of med school, and he was like, Yeah, your a 1c. Is pretty high. I think it was eight or something. He saw, I'm sick. You on Metformin? Because he also was like, maybe it is type two, I don't know. So he sticks me on Metformin. I was probably on Metformin, maybe, like, a month before he realized this was not working. And he would get really frustrated. He said, I don't understand, because I can give you the tiniest drop of insulin, this seems to work. And he's like, we're just going to switch you back to insulin. I'm like, okay, great. And in the meantime, because he was so out of med school, like, fresh out of med school, and he was just a curious person. He ran labs without my knowledge, like I didn't know what we were running. And then he called me, and he said, Hey, you are G 8065, positive. You have type one diabetes, but they told you that in the hospital. No, they told me that I was diabetic, but they kept telling me. I mean, they were like, it could be type one, but they wouldn't label me anything. They labeled me gestational

Scott Benner 19:21
okay, but they did give you insulin there. Yeah,

Robin 19:24
they gave me insulin. So it's like they treated without getting, like, a proper diagnosis. I see, okay, got it, yeah. So he ended up running the labs and finding out that I was G 8065, positive. And then he treated my diabetes up until I was probably 30. Okay, I know I was like 30 or 31 before I saw an endocrinologist.

Scott Benner 19:43
How were your outcomes during that time? Do you know what your a 1c was, or what your goals were?

Robin 19:49
Yeah, it would run in like the six and a half to seven. And I did MDI up until probably 29 I was, yeah, I did MDI because I just couldn't fathom being like i. Attaching these things to me. I was young. I didn't think it was attractive to have the pump stuff to you. CGM weren't a thing back then. So I just didn't want, I didn't want the pump. I thought the pump was really scary.

Scott Benner 20:12
Okay, so till you're 29 you you were, MDI, yeah. MDI, all the way up. How many kids did you have by the time you're 29 three, okay, and they're with the first baby's father, yes, yeah, yeah.

Robin 20:26
We were, we got married, and we were together for like, 10 years. We were married quite some time. Yeah,

Scott Benner 20:32
can you tell me the story of the disillusion of that marriage, please?

Robin 20:36
Yeah, he, actually, he was diagnosed bipolar, not initially, but when it started breaking down, and that's really just like, it's a sad, sad story, to be honest, he would when I was pregnant with the third one, he would just not go to work. He would stay at home and sleep all day, and I would come home and the kids are like, in diapers, and my oldest was scaling the cabinets to feed the younger one while I was pregnant with the third and I was like, what is happening? And I tried to get him help, you know, I took him to a doctor. They diagnosed him bipolar. He was very promiscuous with this. He would disappear in the middle of the night and be cheating on me to the point that, like, back then, you couldn't really see things. It took a little work to go see things, but I ended up pulling up on the Verizon count and being able to pull up the phone numbers that he was texting. It was like three in the morning one time, and he wasn't home. And I called the last number he texted, and some girl answered and told me that he was going to a baby shower with her tomorrow. I said, I don't think so, because he's married a

Scott Benner 21:38
baby shower. Well, that's that's not fun cheating, that's for sure.

Robin 21:43
Yeah, it wasn't great. We went through a period there where it was kind of like on and off situation. I tried, I really tried hard, and I just couldn't handle it. The final straw with that was that I had started a HR position because I work in human resources, and I just graduated, too with my degree, and was starting a brand new position, and we went to corporate for training, and corporate was in another state, and I got back, and I remember that we were having the birthday party for our youngest at the time her she was two, and he had set up the party and done all the stuff and everything. And after everyone had left the party, I sat down and I opened up my laptop. And computers weren't a big thing then, like, not everyone just had a laptop in their house at that point, but I opened up my laptop that I had from college, and I see his emails just setting up there. And I'm like, That's so weird, because there's no emails in there, and it's up on my my laptop, not his. And I'm just like, who does that? Like, that's all I thought in my head was, who does that? So instantly I go to the deleted because, like, who does that look in the deleted file? And there's a bunch of Craigslist ads, man for woman willing to host in my house. I have my three kids full on nude pictures of him, like, posted on Craigslist with his face and everything. And I quietly sat there and forwarded every single one of those emails to my personal email. And got up and I said, I will be back shortly. And we had moved to the town, my hometown, that I was from at the time, and I just drove over to the attorney's house, because I knew everyone in town, and I said, Here's what I have. And he said, Great, we'll file for divorce tomorrow. I said, sounds great. Oh my gosh, yeah. Okay.

Scott Benner 23:33
There are some times that people tell stories and it's easy to get caught up in the how crazy they are part of it, but I tend to feel them a little differently, like, I can't believe that this is something you had to go through. You know what I mean? Like, Yeah. And do you think it mostly stems from just living in a place where the healthcare is shaky and the options to pick boys is shaky.

Robin 24:01
No, I don't think that. I think he was a good person. This is, this is the bipolar I have a problem with separating this out, like people will tell me things were really bad the last year with him. It wasn't just the fact that he was, like, cheating on me and disappearing in the night. He was also, at that point I'd gotten an insulin pump, okay? And I don't typically share this with a lot of people, but it's like, at this point, I don't really care, because it is what it is. He would turn off my insulin pump and let my blood sugar go high and then record himself sleeping with me so that I wouldn't wake up. And, I mean, it was, this was an awful, awful situation. Oh my gosh. And by the time we got, like, the foul for the divorce and this had happened, it's like, it, honestly, it was so hard to wrap your head around everything that was happening in that moment. And I have a hard time holding a grudge against him and saying he was a bad person because he was, he was a great father. And husband, up until the bipolar, the bipolar was like a light switch, you know,

Scott Benner 25:04
wow. But you're saying he would assault you by raising your blood sugar and making you kind of more like, kind of comatose.

Robin 25:11
Yes, turn it off, and then let me get into a deep sleep, and my blood sugar is high, and it's hard to come out of a sleep when you're three

Scott Benner 25:19
400 I didn't think you're gonna say anything worse, and then you just, like, you just opened your mouth again, and then something worse came out. And I was like, geez, oh, I'm sorry, but you are somewhat able to separate his disease from what was happening too. Like you're able to say, Yeah, this was not who he was before this happened to him.

Robin 25:36
And I think that's what a lot of people have trouble with when they tried to say, Oh, he's a bad person. He's not a bad person. This is not something he chose like. And that's hard for it was so hard for me to even follow the divorce. It was such an emotional thing for me, right? Because this is somebody that I spent 10 years with that I loved, I loved so much, and he was a good person to us. And then it's like, it's almost like, when you think about someone that got cancer and you divorce them because you don't want to be with them because they're sick, right? Like, that's not something that you want in life.

Scott Benner 26:10
You have experience with that as well, don't you? Yeah, and that's

Robin 26:13
something that out. I was going to bring that up too, but that that's part of this divorce was part of that because, you know, the divorce was a year and a half long, and that was all traumatic that entire time, too, because during that time he was doing things that were like, turning off my internet because I was working on my master's degree. He would shut my phone off. He would go to the court and tell the court that we're going to work things out, and they would cancel the hearing and stuff like. It was really crazy. Without even talking to me, they would cancel the hearing because, you know, it's small town, so they don't know any different, right?

Scott Benner 26:51
I have to tell you, when you said he'd go to the court and cancel the hearing, I pictured Boss Hogg and Enos straight in the courthouse on the Dukes of Hazzard, but I don't know how close I am to being right about that. No, I

Robin 27:03
mean, they have, like, a police force and stuff, but it was just like, such a wild moment. The police have been out to my house a couple of times, like, because he had shown up with the kids on his scheduled drop off and been like, Oh, I'm moving back in. And I'm like, No, you're not. He's held me at gunpoint. Like, I mean, this was a wild year and a half. So during that time, this is how I met my next husband. Okay? Because I was like, who is going to want somebody with three kids and a freaking insulin pump, right? And this is all I could think about, like, I have these moments where it's like, I got this crazy ex is trying to kill me that's hiring PIs to follow me send pictures to my six year old asking, Is that your mom's boyfriend? And I'm like, and I just need to get out of here, like I'm in a small town that they don't really care. So I met somebody that was two hours away, and I was like, Yeah, this guy's got a stable job. This seems legit, like he goes to work. He's been there for 10 years. Thought nothing of it. He didn't drink. And I was like, Yeah, okay. I mean, I was going through a trying time. This is the one and only time I've ever been admitted in the hospital for my diabetes is during that divorce, because I would go to this other guy's house that was two hours away, and I would drink to oblivion and then end up so sick that I was throwing up, and had no connection in my head that this was, like, diabetes related, because I didn't receive any training on it. It was like, here's some insulin, and this is how this works. And you know, you have a GP handling it. So I didn't know what was going on with that. And I ended up getting with him and thinking this was safer to move and be with this person. Then being there, where my ex husband knew where I was, it was trying to murder me.

Scott Benner 28:47
So you and drinky claws get together and you take the kids over to his place.

Robin 28:50
Yeah, exactly like he had. Well, he didn't meet my kids for probably, like, six months. But then I just jumped right into that. I moved in with him a year and a half later, and it was, it was super crazy. The whole situation was crazy looking back, you know, wasn't the wisest decision in my life,

Scott Benner 29:07
but it was better. It was like jumping out of the window of a building that was on fire, exactly, yeah,

Robin 29:14
and that's really how I frame that in my head now, but it was not the wisest decision, so I ended up moving in with him and finding out that I was pregnant with our fourth that same week. And I'm like, Okay, well, I guess I'm stay in with this. And right off the bat, things were bad with him, like they were so bad because he drinks. So he would drink two cases of beer a week. And I'm like, That is a lot of beer. And I'm not even talking like just the little birds. It's like the big bush bricks. It's like 25 so this guy was like, he was constantly drinking all the time, and he was just very, very manipulative, very belligerent. Would put you down, like, he would tell me things like, I don't know why that a company pays you, because all you do is pay. For work. He didn't realize what human resources does. He hit me at one point, we were out on the back patio, and this was shortly after our child was born. She was probably, like, three months old, and I was drinking wine on the back patio and talking about how I think it's ridiculous that high schools will push kids into skilled trades. Like right now, there's a massive push for skilled trades. They'll tell you, you can make $30 an hour in skilled trades, yeah, because there's such a shortage in it, because they've sent all the millennials to college, and they really need to space this out, you know, like this is my logic in my head. Is you really need to look at a child and say, what are they a good fit for? And send them to what they're a good fit for? Not that our economy is short on people that need higher level education, or they're short on a skilled trade, because that's not going to work for everyone. And I'm explaining this to him. And of course, he's in a skilled trade, so he gets mad about it, jumps up, hits me in the face, and shakes his chair and says, you want a divorce. This is your reason for a divorce. Get out of here, and I'm like, so immediately I know, I know this is a problem. Like, being with him is a problem.

Scott Benner 31:06
So wait, did you want a divorce? Like, was that a thing you had been talking about, or did he just, like, get so upset that you were talking about the trades that he smacked you so that you could have a reason to leave him? Is that I'm so upset like Robin,

Robin 31:21
I don't, I don't know. I think he was deeply offended, and he thought that I was trying to say that his job was

Scott Benner 31:29
worthless. No, you were trying to say that people who make good plumbers should be plumbers, and people who make good accountants should be accountants. We shouldn't just make everybody plumbers or everybody accountants, because we need them in the moment. That's what you're saying, yeah. Okay,

Robin 31:41
all right, yeah. But he didn't understand that, so he just got upset, and then was violent. Yeah, geez. Okay. It was a really crazy situation, but I didn't leave because I just had a baby, and I'm like, who's gonna want somebody? It's got two baby daddies and a pump. Now, right

Scott Benner 31:58
before it was, look, I got three kids and a pump. Now I got four kids a pump, but two baby daddies like this list is starting to look unattractive. I got to stay with the guy who just thought to smack me because I said that welders should be welders, and now I'm really screwed. Like, wow, now you're stuck, stuck. You

Robin 32:16
feel like I'm like, I'm super stuck in this. He gets caught cheating every single year and tells me to deal with it. He doesn't give enough deal with it. And I'm like, Are you kidding me right now? And then, it wasn't until we during covid times, we ended up moving up closer to his family, mainly because unexpected pregnancy I had. We had already had the fifth child by then that had an unexpected pregnancy, and unfortunately lost that baby. But in that meantime, we were like, No, this is too many kids. And I was like, you know, we don't have a lot of help. And he said, well, we'll just move out to Blackford, which is like another town or whatever, and which is closer to his family, is like 45 minutes closer to his family. And that's what we do. And we weren't there maybe four or five months before he's caught cheating again.

Scott Benner 33:04
Where did these guys I have to every time I ask the same question? Was he super handsome? No giant penis, bunch of money, none of the things, right? Like, where do these guys find these girls? Like, that's the thing I can't like, I can never wrap my head around my wife won't cut me a break on anything ever this guy can trip around the world having sex with anybody he bumps into a Craigslist the other guy, a Craigslist dad. Can you imagine on by the way, for you, you guys in Canada, that's Kijiji I don't know what to say. Women need to have higher standards. And guys like, who are they preying on? Every time someone's told one of these stories, my brain goes, I don't understand how they found somebody to cheat with. Like, that's the thing I can't well that

Robin 33:51
he knows, like, he had like, a group of women that were almost like, like, what do you call those band people that just follow the band around, groupies? Yeah, he had like, these groupies that would come to his parties. Like he was, like, the cool dude that would host all the parties that nobody wanted to be with, but they wanted to come to the parties and drink at his house type of thing. This is all around alcohol, right? Yes, all around alcohol. And he's, like, he's just got this band of groupies that keep cycling back over and over and over. So, like, it's all the same women, but I didn't know, because he was from I met this guy two hours from me, and I'm thinking, this is safer, but no, he's out here just, you know, sleeping with all these women and stuff.

Scott Benner 34:30
But at some point you were one of those women. You just happened to marry him, yeah,

Robin 34:35
but I didn't know. I didn't know what was going on. My gosh, okay, actually, when I was dating him before we found out that I was pregnant, he had this one girl living in his house that I didn't even know that she lived in his house, and then she left because she caught him talking to me. And this is kind of like a full circle situation that I can get to afterwards, but I'm going to tell you real quick about it. When I ended up divorcing him and leaving him, that girl is back with him. Now has a baby with him. Oh my

Scott Benner 35:01
god, everyone do better and stop drinking. Please. Just everyone stop drinking. And then just find something you are interested in and put some effort into it. Spend some time on something like get a hobby, go for a walk. I just stop, stop. I can't.

Robin 35:20
I actually don't even drink at all. This is the only time in my life that I drank. Was that one year stint

Scott Benner 35:26
when you were, like, completely freaked out by the bipolar experience. And

Robin 35:31
yeah, that's the only time I ever drank. And then I would drink, like, maybe a glass of wine here and there, but I've never been like, a

Scott Benner 35:37
I mean, you can have a glass, you can have a glass of wine, you can't be using cases of beer as seating, like, didn't? I mean, like, it can't be stacked up in the living room, because there's nowhere else to I can't you guys, you got to do better. Well,

Robin 35:50
I never drink beer. That's not my thing. I would drink wine. That's what I'm saying, is, I've never been a drinker. So obviously, after having a kid with him, I was like, This is crazy,

Scott Benner 35:59
yeah, okay, I'm sorry. All right, so, all right, I don't know. Where are we? Oh, you're you left you left him. He knocked somebody else up. You left him. Where are you now in your life, and how are your How does your diabetes? Are you even paying attention to it through all this? How do you manage? So I was

Robin 36:16
paying attention to it through all of that, like I've always been very on top of my diabetes. I've always been very anal with it, and just like watching this and stuff, but with him, we moved to this other county to be closer catch him cheating again. His sister helps me catch him cheating number one, and then a couple. His sister lives down the road from us at the time. And then it was like, maybe, I think it was 2022 I went to the endocrinologist, because I saw him every three months, and they just did their normal blood work. The endocrinologist calls me and he's like, Hey, I know we did blood work three months ago, but this blood work shows that your GFR is under 40. And I was like, What do you mean? So then I'm like, going and looking through all the history my blood work has never shown that. I've always been over 100 like, every single time. And what does that mean? Well, your kidneys aren't functioning, right? Or something like, it's not like an end all be all, but a GFR is, like, a initial indicator of kidney function. Okay? So they were like, Yeah, this is really concerning. And I was like, okay, that's not great. And of course, I didn't go back and tell my husband at the time, because, I mean, he was busy doing whatever he's doing, finding other women, I guess, I don't know, so I didn't even tell him anything about it. And I waited another two, three weeks, I think, went back in, did the labs again? It just kept getting lower. And they were like, Oh my gosh, we're gonna have to send you to, like, a kidney specialist. And I'm like, What in the world? And I came home and I tell him about this, and I'm in tears, and I'm like, you know, my kidneys are gonna fell. Yeah? And he said, Yeah, I don't want to be with someone sick. You need to leave. Oh, okay. And I was like, I'm okay, great. And I'm not even gonna lie, I literally left the house and went down the road and called my first ex husband in tears and told him that my kidneys were falling. And he said, I'll, I'll go get piped you can have one of my kidneys. And I'm like, No, I don't want your organs.

Scott Benner 38:13
I just don't have anybody to tell anything to. I need help. Yeah, you're all by yourself.

Robin 38:20
Yeah? Yeah, it was so upsetting, like, the whole thing was just upsetting to me, and I had to just leave, you know, so I started the process of leaving him, and I got an apartment. I got a house, and it sucked. It was literally, like a two bedroom house with five kids, and I was renting it, and my life hell, he was making my life hell the whole time. And lo and behold, one of his groupies circles back and moves into his house before we're even divorced.

Scott Benner 38:53
Well, she better not get sick. Wow, I'm sorry. Word for word, I don't want to be with somebody sick. Get out. Yeah,

Robin 39:00
word for word, for word. I don't want to be with somebody sick. You need to leave Jesus. I'm gonna need to

Scott Benner 39:05
do seven interviews with people with great stories to get this out of my head. And it's your life. It's not a story. It's like, it's your that's what keeps striking me, is that it's, this is not a story someone's telling this happened to you?

Robin 39:18
Yeah, this is my life. And it's crazy. The whole thing is just crazy, and that's crazy. He drug me through the mud. He told everyone in the county that I cheated on him, and that's why I was leaving. I've never even told people this. Never told them, but he told everybody while she cheated, she was a hoe. And I'm like, Is he kidding right now, like, is okay, whatever, even his sister, his sister testified to a guardian ad litem that she didn't know that I had diabetes, like she knew that I had diabetes, but it wasn't really serious.

Scott Benner 39:56
Can you move? Is there a place to leave to like, I don't understand. All right. Well, you know what? We're 40 over 45 minutes into this. The rest of your story might need to be a different episode, but I'm not sure exactly, but, like, I want to keep going. But in the end, can I guess what happens? Do you need a kidney transplant?

Robin 40:18
I do not actually, my actually, after I moved out, it was the strangest thing, my kidneys just rebounded like that, back up over 100%

Scott Benner 40:26
maybe they just didn't like being near him.

Robin 40:31
Was this a sign? Was my kidneys telling me to leave

Scott Benner 40:33
so your kidney function testing eventually cleared up?

Robin 40:38
Yeah, it just they don't know why. They don't know what happened. It was about, like, three months worth of issues with the kidneys, and then it was like, poof, yeah, I just cleared right

Scott Benner 40:48
up. Okay, so how do we get to the part where you don't have diabetes anymore? Like, what's the path to that?

Robin 40:53
Yeah, actually, I met somebody. I've known him a while, but he was like, Hey, come get coffee. And I was like, No,

Scott Benner 41:01
you're like, Listen, I'm a lesbian, for sure. Just get away from Yeah, yeah, get you guys need to get out of here

Robin 41:06
converting. Maybe I'm gonna become a nun, right? Yeah, whatever. I don't know at this point, but I'm hard pass on that. So he spent seven months asking me to get coffee, and to the point that he was like, I don't I just was like, Look, I'm gonna, I'm gonna show up at six in the morning because I have to be at work, and I got five kids, and I don't really have time for you. And if you want to get coffee at 6am I guess that's when he's like, dill, geez.

Scott Benner 41:31
He must really like kids go ahead, exactly

Robin 41:33
like, I don't know. And he knew I had two ex husbands. He knew what was going on with that. We go on. We meet up for coffee, and we things just went better than expected. You know, we ended up getting together, and I was probably at the rental maybe a total of maybe six months, because I had met him like long before that, but I told him I was married. And I was like, Yeah, I'm not interested in doing anything. So this is how we knew each other. He knew me married, and he'd asked me to just get coffee as friends multiple times throughout that and I was like, no. So we ended up together, and then I bought a house the day that my divorce was finalized, and then we ended up moving in together. And it wasn't a situation that was like I felt like I was trapped or I was trying to get away from anything. It's like, this is my best friend. You know, we stay up late at night talking. He likes question 30. I like to ask really strange questions at, like, 1230 at night. Like, if an alligator came into our house, and he's like, we don't live, where alligators are?

Scott Benner 42:31
You say, Listen, man, this isn't the game. You got to give that part up. The alligator comes in. What do we do now? Oh, I'm

Robin 42:35
just like, how you got to take care of that, because you can't really kill it. And sound like I just asked him, like, I was asking like, these random questions, or I almost killed us one time with a spider, because the spider crawled up my leg in the car and started freaking out. I jumped on top, and he's driving. I'm like, pull the car over right now. And he's like, what is happening? There's nowhere to pull over. You

Scott Benner 42:53
found a guy you liked. You didn't feel like you were it does suck because you're in the bad rental, and people could make the point that you're trying to escape again, but you sounds like you felt really comfortable this time. This is the first time you were feeling like I'm making a decision because I like this person. They like, yeah, okay,

Robin 43:11
are you still with that guy? Now? Yeah, we're actually gonna get married.

Scott Benner 43:15
Oh, good for you. Okay, so, so you so you guys get together, and then what? What happens with your baby? Like, that's

Robin 43:22
where I was going with this we move in to this house together. Like, I literally bought this house and moved in in November, and I'd went to the end though, and I'm like, come to end though, everything that's happened and stuff, because, like, by this time, I've been seeing him for almost a decade, so he's like, You know what is going on? And I'm like, Yeah, this is super crazy, and

Scott Benner 43:41
you're asking the wrong person. You don't want to hear this, but go ahead right now. He's

Robin 43:45
like, always super interested in the whole process. And he's like, he tells me, I know a guy. And I'm like, What are you talking about? You know a guy? He's like, Oh, I know this guy. He can help out with the whole diabetes thing. And I'm like, Yeah, that's why I come to you, right? Like,

Scott Benner 43:59
do you feel like someone who was selling you something in an alley at that point? I know it got like that. Yeah.

Robin 44:07
The funny thing is, is he did not know him. He just heard about the research that this guy was doing, and at the time, University of Chicago was the only one doing islet cell research. But he wasn't necessarily referring me there for the islet cell. He said you would make a great candidate for a pancreas. He's like, You are always on top of your numbers. You're always looking you're always making adjustments. You're a perfect candidate for this. If you're this sick of the diabetes and you feel like this is holding you back, because this is what I felt like. I was trapped with people in my past because, well, not my first husband. We were we just met. We're young, but definitely felt more trapped later in life with the diabetes like this is what I had to settle for. I had to settle for an alcoholic that was abusing us and using my kids at that too, and stuff. And then I had to be with him because of his diabetes, because who wants that, right? So he's like, No, if you're very serious about this, I know somebody. And I was like, Okay, great. So he tells me. Here's this information. I emailed that doctor in January, and it was January of 2023 emailed this doctor. I said, Look, I've been type one for this many years. I've got five kids. I had my uterus taken out this point as a whole different story that had, like, some anemia issues where they end up taking out my uterus and stuff. I'm like, I've already had hysterectomy. Here's where I'm at in life, and I don't want diabetes anymore. Can I have a pancreas? That's literally what was

Scott Benner 45:26
like. And this person was doing research. What's this doctor's name, Dr

Robin 45:30
mukowski. He's out of University of Chicago. Yeah, I just looked him up and emailed him directly. Okay? Emailed me back immediately and said, Are you available this afternoon for a phone call? What I was like, Oh, sure. Am where we're going with this.

Scott Benner 45:45
And what was his research?

Robin 45:47
He's a transplant doctor. Like, that's what he does, is transplant at University of Chicago. But he also does Islet Cell Transplant Research. Like, that's something big. He also does T, P, a, i, t, which is like, total pancreas removal, and then they do like islet cell, like they take your your pancreas out, harvest your own islet cells, and then put it back in you for people that have chronic pancreatitis. So he's a transplant doctor, that's what he does. What's his first general couture p, i, t, I, O, R. He emails me immediately back and calls me that afternoon, and he just goes through my history, and he doesn't ask me why I want rid of diabetes. I'm guessing he's probably heard at all at this point, but I'm like, I don't want diabetes, so if we could just, you know, get a pancreas, that'd be great. And then he says, okay, my research coordinator will be in touch with you. And it was probably a two month process where she met with me, and then she did like, a two hour presentation where she showed me the different options, and not once did they pressure me. I want to make that clear. They don't pressure you into anything. They're like, you can get a pancreas Sure. We could put you on the list and give you the pancreas, and then they're like, but we also have this research going on, and you could also opt into this research. And here's what the research is. And they gave me, like, three different options for research. One of them I didn't qualify for, because you had to be a certain blood type for that. And honestly, that's the one that's like, really in the news right now with the tag a rupart taggarup heart is a medication that is less invasive and anti rejection medication so it doesn't hurt your kidneys. But you had to be a certain blood type. And I didn't qualify for that because of my blood type, but they told me I would qualify for certain Nova if I passed the testing. So I was like, yeah, absolutely. Sign me up. No questions asked. I just wanted to be signed up because I didn't want to have diabetes, because I felt like diabetes has been a path in my life that's been so destructive.

Scott Benner 47:39
Can I ask you, is that because you have this feeling that having diabetes makes you less attractive, I don't even mean physically, but just less attractive as a mate, as a friend, do you have that feeling inside of you, or is it just that people have actually treated you that way? So you know, that's how you're being treated like is there any point where you think it's not the diabetes, it's the people I'm meeting, or do you think, well, the people I'm meeting seem to feel like this, and I'm not going to meet different people, so it's the diabetes. Does that make sense?

Robin 48:11
Yeah, well, with my first husband, no, I didn't have diabetes when I met him, right? So that was a non issue, and he went through a lot with me, like us finding that out, doing all the trainings and figuring things out like that. That was hard. We went through so much together. He would wake me up in the middle of the night and complete sweats because my blood sugar was 20 and begging me to eat, and I'm crying and I just want water. Like, I don't think that was the case with him at all. Okay. Now past that, you know, I got pregnant young and had kids young. So like, I was 23 I was two weeks into being 23 when I had my oldest. I guess I just didn't find it attractive. I just at that time, it was probably 20 years ago. You really hid your diabetes. Like, even at work, even though I worked in human resources, I'd seen it happen. Where people were, they were like, Oh, we don't want to hire somebody that has medical issues type of thing, you know, right? So it's always just been something that I've just been quiet about, and I've tried to hide it, and then even getting out of college and going into, I say, like, the big girl jobs and stuff, you didn't want to be digging an insulin pump out of your bra, like in the middle of a meeting, you're in corporate meetings and stuff, and it was embarrassing to me. Yes, it was embarrassing. It was something that I just hid. And I dealt with my first husband. He knew all about it, obviously. And we would look at things together. And he was super smart, like he can literally do equations in his head. That was crazy amount of equations. He would look at my numbers and say, Oh, we got to modify this and stuff. Now my second ex husband, he didn't hardly have anything, but he would show up to pump training when I got the new tandem pump, you know. So he would show up to that, but he would just act oblivious to the diabetes, like this wasn't his problem. It didn't involve him. So, yeah, I felt like it was something that makes you less attractive.

Scott Benner 49:57
Yeah, okay, I just want to understand. Where you're coming from. So by the way, I'm just gonna tell people, because Robin's story is so crazy, I looked up Dr Witkowski. He's a real person.

Robin 50:10
Yeah, he is. And you know what? I bet he would go on your podcast

Scott Benner 50:13
too. No joke, that'd be awesome. But, but, okay, so you meet him, and he says you might be eligible for some studies. So what did you end up doing and and what did he end up doing for you?

Robin 50:24
So we, we went up there and did testing. The testing is really rigorous. They literally scan everything on you. I'm talking like they ultrasounded every organ I own. You do all kinds of heart testing. You literally get tested for anything and everything under the sun, and then they have to wait to see if you qualify, because there's a couple blood tests, like if you pass the health part of it, there's a couple blood tests they need for you to qualify. For one, you have to be able to match, like an organ donor. So women, in particular, when you have multiple children, you can become sensitized to other blood types and other organ tissue, things like that. I don't really know the technical terms, but they had that test had to come in. And then for my particular study, I think you had to be epstein barr, positive, maybe, or negative. I don't remember which one it was. I qualified. Whichever it was. I qualified. My sensitivity came back as zero. I wasn't sensitized towards anybody. So like, Yep, you're a great candidate. And that took a little bit. So that happened in March of 23 and then once all everything came back, they said, Okay, we're ready to go. They scheduled me in May of 23 to have pouches put in my stomach. So the study that I was in was ternova, where they were testing out pouches in your stomach. They put the pouches in. They're like mesh pouches that kind of resemble like hernia repair pouches. Okay? And then they would put islet cells in those pouches to see if those pouches could produce insulin or C peptide. They're trying to find a new home for islet cells to see if it works, if it would do better than what they already do, the inner portal ones that they do in other countries. We don't do it here, but in other countries. So that's what they were testing to see if it was more effective. Now, I didn't sign up in an initial thing. That's something that I think people need to understand is that when they're in phase one trials, they're testing to see if those are dangerous to people. Phase two trials are looking for efficiency. I signed up in phase two. I wasn't trying to sign up to something that was super risky. So they put the pouches in, they let the patches vascularize, which is just grow blood vessels all around them, so that the islet cells would have a blood supply. I was in the hospital for maybe, like five days. No, I was in hospital for two days, and stayed in the hotel for three days past the pouch surgery, and then we let those marinate a little, is what they call it, or whatever. And then came back when they had donors. You know what? I forgot. I had to do thymo induction too. Thymo induction was like a week long, and that's where they kill your immune system. So you stay in the hospital and they're killing your immune system. So that was interesting. It's really rough. It kind of like having a really bad flu that you stay there a week. They monitor you while they do it. I ended up with serum sickness after that, and had to go back to the hospital for a week. So,

Scott Benner 53:15
and this is all just to get ready for these to put in the cells. Yeah.

Robin 53:19
So not everyone gets serum sickness. That's just, they say it's typical with people that's been around, like horses and rabbits, and if you've been, I think blonde hair, people like light skin, blonde hair, tend to get it more often. But yeah, so that was just an extra. I was just being extra.

Scott Benner 53:36
Okay. Okay, so you get this procedure and you wake up and you don't have diabetes anymore.

Robin 53:44
No, that was a whole process with that. So we did those, the islet cells in the abdomen, and those actually stabilized my blood sugar. They went in and did those, and I want to say it was probably within a couple weeks, I didn't have highs or massive lows anymore. I would get up into the 200 Sure. But before they put the initial islet cells in, I would drink coffee in the morning with like, three tablespoons of creamer, and I would hit 400 every day. Every single day. It didn't matter, black coffee and three tablespoon spoons of sugar free creamer, and it would just skyrocket. It would come back down. But it was skyrocket. So after they did the initial islet cells in the first set of pouches, it would be like, maybe 250 max. And then I would never go low. I didn't ever get below 70. So that was never an issue. I think the lowest was maybe like 55 one time out of nowhere. But outside of that, I didn't have lows. So then they were like, Okay, this is really good. You go back at three months and you do C peptides, you do middle tolerance testing, where you drink, like an insured drink. They draw your blood every 15 minutes. They check your C peptide and stuff, and all that was coming back. Pretty good. We transplant a second time, but in between the first and the second transplant in the pouches I had gotten the most. Yeah, and because of the anti rejections, I didn't know I had pneumonia, so I ended up going septic. And I was just like this, happy as could be. Had no idea that I had sepsis that had went in because I had a fever, and they were like, Yeah, you're septic. So we had to lower transplant meds in between the two transplants, and then they transplanted, maybe, like, a month after I had sepsis, into my lower abdomen, and I ended up rejecting because of that, because the transplant meds were lower and we didn't have time to build them back up, so my immune system rejected those. So what we did was we went in and we took all those out, and then it was October the ninth, 2024 we went in and did the portal liver vein portal transplant. They took islet cells and stuck them in my liver vein portal, and I woke up not diabetic. That was wild. When was this? That was October of, 2024 October 9.

Scott Benner 55:57
2024 Wow. So you're on anti rejection meds. On anti

Robin 56:01
rejection meds. Okay,

Scott Benner 56:03
and is that like a lot of pills that you take every day? Or how does that work?

Robin 56:06
No, actually, I do an IV every four weeks of Bella, and I go to Chicago for that. Right now, once I'm out of research, which will be one year post transplant, they'll be able to get it locally. But right now, I go to Chicago every four weeks and do my bellicep IV, and then I take tacrolimus, low dose. Like a lot of people that have transplant, they take my for deck, they're taking tacrolimus. They take steroids, like you have a bunch of pills, but because I'm on bellicep, I only take tacrolimus and a low dose.

Scott Benner 56:43
But that's it. Okay. And so how long has it been since?

Robin 56:47
It's almost a year. So the ninth will be a

Scott Benner 56:50
year you haven't taken any insulin.

Robin 56:52
No insulin. Nope. My a 1c, is 5.1 right now?

Scott Benner 56:56
Wow, that's good. It's insane. Can you describe some ways that it's changed your life.

Robin 57:01
Everyone always asks you, what are you going to eat? And I'm going to tell you, if you've been diabetic for any amount of time, you don't care about that food. Nobody cares about the food. I have not changed my diet whatsoever. What I cared about was going to bed and not hearing a beep, sleeping through the night, not worrying that my kids were going to find me dead in the morning, because dead bed syndrome is a thing, and type ones, you know, those are the things I cared about. My kids have even been on my Tiktok before and talking about how, like, what the difference is me not being diabetic? And they're like, they'll straight tell you you're not. Like, get me food right now. I have to have food right now. All my kids have ever known is the diabetes, the need to carry apple juice and snacks and stuff. We go hiking. I've been to Colorado, to the mountains. I went watched my sister get married without an insulin pump. I didn't have an insulin pump. We went to Utah on me and my fiance went to Utah in January, and I did have my insulin pump with me because I was too nervous. I was hard to part ways with my insulin pump.

Scott Benner 58:05
You traveled with it because you thought, what if something happens? And I suddenly need it?

Robin 58:09
Yeah, I still have my insulin pump and it's still loaded with insulin in it, but I do leave it at home now, but I still have loaded

Scott Benner 58:18
it's more about the stuff that happens around diabetes and the fear you have than the process of having to take care of your blood sugar. Like, is that? Am I understanding that correctly?

Robin 58:29
Yeah, it's just it's mentally exhausting sitting there thinking, like, if I eat that, do I want to pay the price? Do I want to risk giving myself so much insulin and trying to combat that? Do I want to spend my day doing that? Do I want to spend my day feeling like crap because I have to fight these highs and lows? You know? That kind of stuff has been it's life altering. Yeah, that's awesome, and it's embarrassing listening to your pump beep. You're in a meeting, you know, and your pumps going off, and now they're like, What is going on over there? Or people saying, silence your phones. I i went to an orientation at one point when I was married to my first husband, and I was in HR, and somebody told me, cool pager, I'm like, actually, it's an insulin pump. You work in HR.

Scott Benner 59:12
Cool pager, thanks. Yeah, it's great. Okay, so what are the I mean, it's obviously sounds magical, but what are the downsides?

Robin 59:20
I think the downsides for me was the trial itself. So like, all the surgeries that I had with the trial, I had four or five surgeries all together within like, a year, and that was a lot for me. But if you're just doing the inner portal, that was amazing, to be honest. Like, I don't have a ton of downsides with that. I had a band aid coming out. I didn't have it wasn't a major surgery. I had a band aid. I was awake through the process. I had a panic attack on the table. I will say that I don't really know why, but they checked everything out, but I had a panic attack. But when I woke up, I literally just had a band aid on my side. And I would say that sometimes the anti rejections are a struggle. So. If you're new to it, and you're just going in and you're just getting an islet cell transplant, I would anticipate that starting those anti rejections would be rough, but I'd already been on them for a year when I did the final transplant, so it wasn't as rough for me. But figuring out those anti rejections was a little bit hard, because they lower your immune system so bad they got to figure out the right amount to give you. So there was points where I didn't have any white blood cells and I just felt completely drained, and I was sleeping a lot and just didn't feel very well. Yeah, I wouldn't say that it was a huge hindrance. I mean, I just started the job I have now. Two weeks after transplant, they called me for an interview. I was like, Hey, I'm getting a transplant. Can I interview like in a couple days? And they were like, sure.

Scott Benner 1:00:47
Are you more susceptible to cough, cold, flu, stuff, or what are your worries around that about having a lower immune system?

Robin 1:00:56
Well, I got seven kids at home, and I would say that I am not any sicker than I was with diabetes. I've always had an issue with my lungs. This has been a long standing issue. Even before transplant or before anti rejections, I would get pneumonia fairly easily enough that I would go get, like the old people, pneumonia shot. You know, every five years I would get that. So in the past year, I haven't I've gotten sick once, and that was just actually a couple weeks ago. I had to go. I went and got my IV. Didn't know I was sick. It's been humid here. I thought it was just hard to breathe outside. And then I got up that morning and went to church after my IV. We have a nurse practitioner that just goes to church with us. And she was like, You're you don't look good. I'm like, Yeah, I know. Like, my oxygen has been a little bit low, but maybe I'm just tired from the IV, I don't know. Like, it was a long day. She said, No, you need to go to the hospital. I said, Okay, so I went to the hospital, and then they did all the work up, checked my heart, checked everything, looked at, didn't chest X ray. They said, Oh yeah, pneumonia. I'm like, okay, great. And they're like, this could be partially collapsed up here this long. But this is not a new issue for me. It's not anything that's above and beyond what I've had in the past.

Scott Benner 1:02:10
Okay, so there's no restrictions that the transplant surgeon gives you about being out in public or no.

Robin 1:02:17
They tell you, if you're in a crowd, that you can wear a mask, but I don't wear a mask, and I haven't had any issues with it. Okay? And I work with people all day, like I work in human resources. People come in and out all day. Now I will tell people, if they appear to be sick of any way, please do not come in like, I'm like, No, stay right there. I'll stop them. Do you

Scott Benner 1:02:36
think there's a time five years from now that you'll be like, I can't believe I have to get an IV every four weeks, no, no, never, because the win is worth it.

Robin 1:02:44
Yeah, absolutely. I mean, now later on, after being a year out, I can eat things that I would have never ate. I didn't eat mashed potatoes in 10 years, but I was like, these are pretty good.

Scott Benner 1:02:57
I remember potatoes, wow. And your kids have seen a big change, too.

Robin 1:03:01
Yeah, we actually, we still eat very healthy. We eat a lot of Mediterranean food, so we eat healthy. But I will say that Pizza Hut does Do you remember as a kid, used to get the book at things, and you would get, if you read so many books, you would get a little personal pan pizza, I don't know. Oh, we used to do that in our area, okay? So you could read all these books, and then at school, they would give you, like, a little ticket, and you could go to Pizza Hut and get your personal pan pizza. They recently Pizza Hut came back with personal pan pizzas that are like, $2 on Tuesdays. So I will say that the last three or four Tuesdays, we bought personal pan pizzas for everyone in the house for dinner, and I ate them, and my sugar peaks

Scott Benner 1:03:39
at like, 140 Yeah, just like everybody else's. Huh? How about that?

Robin 1:03:42
Yeah, just like everyone else. So there's some things I will do, like, I will eat now that I would have never ate in a million years. It wouldn't

Scott Benner 1:03:49
have been worth the risk for you. Do you ever check your other kids? Like, is there other autoimmune through your children? I do check

Robin 1:03:55
them, actually. So I'm a very big advocate for the trial net. Are you familiar with trial net? Yeah, of course, yeah. So I'm very big advocate for that. I test my kids. I just did one on a tick tock live, actually, earlier this week, tested one of the kids, obviously not showing like all that, but we walked through it and tested her blood sugar, not her blood sugar. We tested her blood and shipped it out this week. But minor on that five year cycle that they got all got tested five years ago, recycling, back, retesting now and then we send them for the antibodies. None of my kids have any major health issues. My oldest daughter, the one that I was undiagnosed diabetic with, she has gut issues, and we don't really know what that is. So we've been to the GI specialist, and we've been doing a lot of testing. It's not celiac, so we don't really know if it's a gluten intolerance or what is going on with that? So for a while, we all a low FODMAP in the house, and everyone was really mad about that.

Scott Benner 1:04:49
Yeah, I've done an interview with somebody who had to go through that. It did not sound fun at all. Wow. Okay, holy crap. Robin, yeah, you're okay now,

Robin 1:04:58
wild ride. Yeah, I'm. Good now we're getting married in October. Steve and I are good for you. Congratulations. He's a very, very good person. He has a lot of patience. He's bald, though, and it's probably because all the patients he had, he grew up with four siblings and no brothers, or like, four sisters and no brothers. I feel like he was built for this, living with seven girls. It hit.

Scott Benner 1:05:19
Had you ever figure out why? I mean, obviously, you're getting married now, but like, you've been through a couple of guys where you had a ton of trouble with, obviously, but like, at that moment, you're like, there's a guy, like, I have five kids, and I have all these, I have health issues and, you know, everything and, and I just went through this with this other person. Like, why is he interested in me? Did you ever like, has he ever, like, quantified it for you?

Robin 1:05:40
No, we've never really talked about, I wouldn't say that in particular, he was going through a divorce at the same time, and I think that a lot of that was just a friendship that had formed prior, like we were just very close. Like we talk about anything and everything. I tell him the craziest stuff, and he's like, okay, is I don't know. I have no idea. He always tells me, it's because I'm smart. He really likes how smart I am and resilient. I'm always very kid centric. He talks about that a lot. I'm always doing things for them. Did he have kids? Yeah, he has two girls.

Scott Benner 1:06:16
Okay, so now you have so do they live with you guys? They live

Robin 1:06:20
they're 5050, his ex wife lives like maybe two miles from us. Okay, so they

Scott Benner 1:06:26
will go there. There are seven kids in your house at some points during the week. Every other

Robin 1:06:31
week there's seven. So two of mine are on an every other week schedule, and then his two are on an every other week schedule, but we're on the same schedule. And then three of mine are at my house 100% time because of that first ex husband I had that was bipolar. He just stopped talking to his kids like it was very random out of the blue. There were some situations going out where he remarried and I think she's crazier than he is.

Scott Benner 1:06:56
You think his illness got in the way of him being a father at some point?

Robin 1:07:00
No, I think it's the new wife. Be honest. I got you. She was offering me healing crystals to heal my diabetes, like this is, yeah, that was, that's a whole crazy thing too. Did you try them? I did not try the healing crystals.

Scott Benner 1:07:13
No, it might have worked. Yeah, I feel like I'm done. I feel Do you feel tired sometimes, after reliving this through the conversation, like I'm exhausted by your

Robin 1:07:23
story. Yeah, I do. I feel tired, yeah, when I think back about it. But now we have things in place. There's just things in place. So the first ex husband, I don't have any contact with him, like at all, and he does reach out to his kids. Every once in a while, I would say he reaches out to his kids, like, maybe every two or three months, it's usually when him and her split up, or when they are together. It's very chat, GPT message type thing, like, you know, happy holidays, stuff, whatever

Scott Benner 1:07:51
it sounds like a an AI wrote the message that he sends. I got you. It's 100%

Robin 1:07:55
AI wrote, yeah. So we don't even deal with him at all. That's not even chaotic. We don't have any discussions with him whatsoever. And then on the other ones. So my second ex husband, we have been through court battle, through court battle, through court battle. We had a guardian ad litem. We're now on our family wizard. I had to get a parent coordinator. And I'm like, Look, I this. This is probably the most insane about that whole situation is that you told somebody they were sick and that they need to leave, and you're so mad, you're going to send them 50 messages a day, and had to have a court order put in place to stop this. That one's a whole nightmare all the time. Whole nightmare all the time. But, yeah, we do that every other week. He's only wanted to message me once. So there was a lot of exhaustion in the beginning with all of that, but now that we have these boundaries put in place, I feel like that there's less going on. I got a new job in the past year. The work life balance is amazing. Actually, they never bat an eye when I'm like, I have a kid thing. They're like, yeah, absolutely go ahead. We'll talk to you later if you need to reschedule something. They're like, absolutely this job right now is so fantastic that when I came here, I told them I was still doing payroll for my old job at the moment, while they were looking for they're like, do you want us to give you a couple hours so you can finish payroll this morning? And I was like, what?

Scott Benner 1:09:16
I'm not used to people being this nice to me, but thank you. That's correct. Yeah, it's really wonderful. I'm glad that your life turned around as much as it has. Like, it's nice to hear the end of a story that feels like celebratory and it's

Robin 1:09:29
very much like, this is the greatest thing that could have happened to my they want to throw me a party when I was officially taken off my pump, because they were like, your diabetes free, you know, and they wanted to throw a party. And so, like, this is probably the best thing that could have happened, because I have a partner that's extremely supportive. I can literally sit there, not crazy, and be like, I think I'm gonna die. And he's like, probably not, but let's go.

Scott Benner 1:09:52
Can I ask you when the transplant happens? Do those people talk about, like, is there any risk of failure? Like, could you wake up six months from now? Six. Years from now, and this doesn't work anymore,

Robin 1:10:01
they do, yeah, absolutely. So that is something that a lot of people do talk about, to be honest, because they say that you need, typically, two transplants in order to be completely insulin independent. I only had one, and they were like, wow. They were completely amazed that mine was even working on just one. And then there's some people that need to top up later on. They say they have a patient that's 10 years that was diabetes free, without having to do anything. And she just recently went in and got another islet cell transplant because hers was starting to not work. I mean, it's a life of an organ. Just like, if you get a heart transplant, you may go like, 20 years, you know, or you may go 10, it's a life of the organ,

Scott Benner 1:10:48
yeah? And I guess the cells even can get, I don't know what the word is like, do they

Robin 1:10:53
Yeah, they do say that they could get tired. They could burn out. They say that too.

Scott Benner 1:10:57
Okay, I just think it's important for people to hear like, it's amazing how it's worked for you. And I think it's, I think it's awesome. I love that the research is happening and that they're doing these things. But it's not magical. Like, I don't want people to feel like, you just, you go to the doctor and he's like, Okay, here's some cells, and you don't have diabetes anymore. There's a lot that goes into it. Yeah, right.

Robin 1:11:17
100% I don't ever want anyone to think this is like, an end all be all, this is some magical cure that you will never have to think about anything again, because there's still anxiety that lean. I still wear a Dexcom. I have not had any issues, but I still wear my Dexcom because I spent 18 years diabetic, and there's a lot of anxiety that surrounds that. And you know, what if it comes back? What if they fail? I still try to watch that. I watch my trends. I'm like, maybe, why am I higher this morning? What is happening? I don't ever think my first thought is never, I didn't get enough sleep or I ate something too high carb. My first thought is, always, are these cells burning out? Yeah, yeah, you know. So you'd have to live with that. Sure, it's not an end all deal. But what I will say about it is I would do it 1000 times over again, because it does lower your risk for death for sure, out of the diabetes.

Scott Benner 1:12:07
Yeah, you've said a number of times that it makes me feel like you are one of the people who's very concerned that, like, your blood sugar could just get really low and you'd shut off, and that would be the end of it. Yeah, that's a thing you've lived with for a long time,

Robin 1:12:19
yeah, and it's very scary, because I've had that happen. And like I said, my first ex husband was waking me up in my sleep realizing that you're you're low, you're low, and you have to do something that's very much a fear of mine and but it protects you. If you do go have the transplant, there's trade offs, of course, yeah, but I would do it 1000 times over again. There's a lot of trade offs with it. It's not this miracle cure by any means, but they're, they're getting there

Scott Benner 1:12:46
in your mind. If this fails, it fails and you just have diabetes again. It doesn't fail, and you don't have a horrible low blood sugar at four o'clock in the morning when nobody's

Robin 1:12:54
looking right. I just look at it like that. If it fails, then you have diabetes again. Because that is one of the primary things that I asked about this is what happened. I was more so concerned about when you get a pancreas transplant. I'm like, What happens if the pancreas fells? Because I thought they took out the organ, which they don't. I didn't know that initially, but they're like, well, then you're just diabetic again. And I was like, oh, okay, well, that makes more sense. But I just feel like the, I guess, long term, that it's protecting you from these other issues that you end up having as a diabetic, these risks that you run into, you know?

Scott Benner 1:13:28
Well, I really appreciate you sharing this with me. It's a unique story for certain and I love hearing that there's doctors like wickowski, yeah, Dr Wieckowski, yeah, at University of Chicago medicine. Is that, right?

Robin 1:13:41
Yep, University of Chicago medicine, wow, that's awesome. He's fantastic. He's fantastic with his patients and stuff, their level of care is amazing. I've never had level

Scott Benner 1:13:50
of care like that. At least you listen, it's exciting. Your GP knew a guy, and look where it led. He knew a guy.

Robin 1:13:56
I know a guy that didn't really know a guy. Yeah? I mean, I've

Scott Benner 1:13:59
heard of him. I saw it on internet. Let's give it a try. And then you're just, like, ability to sit down and just knock out an email real quick that says, hey, like, I'm up for this. And then you go through all that testing, and you're a good candidate. Like, a lot of good luck in there too, you

Robin 1:14:13
know? Yeah, absolutely, because they get applicants every day, right? I would imagine, yeah. So, I mean, it's just, I feel like it's more of a fate situation. I'm just like, wow, that it's impressive. It's impressive that this is the path that I went on. And sometimes I also look at this and I think maybe this is the blessing I get from dealing with those two ex husbands.

Scott Benner 1:14:33
You know, you said it differently, but what I was thinking was, I do feel like the universe owed you a win. That's for sure. You know for sure. Yeah, Robin, thank you so much for doing this. I can't thank you enough for coming on and telling this story and sharing this with everybody. It really is awesome. And I guess I'll, uh, I'll put Dr Wieckowski, his name in the in the show notes, so people can find it if they're interested in learning more about it. And maybe I will reach out to him and see if he's interested in coming. On and talking about his research and what he does,

Robin 1:15:02
I'd be happy to connect you guys. He was just on the news not too long ago.

Scott Benner 1:15:06
Would you that'd be great, yeah, do it, yeah. That'd be awesome. Okay, all right, send you guys an email. Awesome. Hold on one second for me. Okay, all right, thanks. Thank you.

The contour, conversation you just heard was sponsored by touched by type one. Check them out please. At touched by type one.org, on Instagram and Facebook, you're going to love them. I love them. They're helping so many people. At touched by type one.org, the podcast episode that you just enjoyed was sponsored by ever since CGM, they make the ever since 365 that thing lasts a whole year. One insertion every year. Come on. You probably feel like I'm messing with you, but I'm not. Ever since cgm.com/juicebox head now to tandem diabetes.com/juicebox and check out today's sponsor, tandem diabetes care. I think you're going to find exactly what you're looking for at that link, including a way to sign up and get started with the tandem mobi system. You Paul, 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 podcast 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? 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, wrong way, recording.com.

Please support the sponsors


The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

Donate
Read More
Juicebox Podcast, Interview, Type 1 Diabetes Scott Benner Juicebox Podcast, Interview, Type 1 Diabetes Scott Benner

#1679 Third Eye

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

After losing her pancreas and waking up diabetic, Carly shares her journey from shock to empowerment—learning to thrive, parent, and find humor while managing type 3c diabetes with fierce optimism.

+ Click for EPISODE TRANSCRIPT


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

Scott Benner 0:00
Friends, we're all back together for the next episode of The Juicebox podcast. Welcome.

Carly 0:16
My name is Carly mcelha. I've been a diabetic since August of 24 so pretty recent.

Scott Benner 0:27
Check out my algorithm pumping series to help you make sense of automated insulin delivery systems like Omnipod, five loop, Medtronic 780 G twist tandem control IQ and much more. Each episode will dive into the setup, features and real world usage tips that can transform your daily type one diabetes management. We cut through the jargon, share personal experiences and show you how these algorithms can simplify and streamline your care. If you're curious about automated insulin pumping, go find the algorithm pumping series in the Juicebox podcast, easiest way Juicebox podcast.com and go up into the menu, click on series, and it'll be right there while you're listening. Please remember that nothing you hear on the Juicebox podcast should be considered advice medical or otherwise. Always consult a physician before making any changes to your healthcare plan or becoming bold with insulin.

US med is sponsoring this episode of The Juicebox podcast, and we've been getting our diabetes supplies from us med for years. You can as well us med.com/juicebox, or call 888-721-1514, use the link or the number. Get your free benefits. Check and get started today with us. Med, a huge thanks to my longest sponsor, Omnipod. Check out the Omnipod five now with my link. Omnipod.com/juicebox, you may be eligible for a free starter kit, a free Omnipod five starter kit at my link, go check it out. Omnipod.com/juicebox Terms and Conditions apply. Full terms and conditions can be found at omnipod.com/juicebox just in time for the holidays, cozy Earth is back with a great offer for Juicebox podcast listeners. That's right, Black Friday has come early at cozy earth.com and right now you can stack my code Juicebox on top of their site wide sale, giving you up to 40% off in savings. These deals will not last, so start your holiday shopping today by going to cozy earth.com and using the offer code Juicebox at checkout.

Carly 2:46
My name is Carly mcelha. I've been a diabetic since August of 24 so pretty recent. And

Speaker 1 2:56
yeah, a year and a month. Yeah, Carly, how old are you?

Carly 3:00
I'm 4040,

Scott Benner 3:02
and you're in the great white north. Is that correct? It is, yes, it's hard to miss. You have some so you have some great little like, beach pattern stuff that I I'm gonna enjoy so much while we're talking. Do I really? Yeah, okay, did you not know?

Carly 3:16
Well, no, but I hear you say things about people, like, when they're from Boston. That's an inflection that's, I'm not from Boston. That's my best Boston impersonation, my best book.

Scott Benner 3:29
So you're 40 years old. You were just diagnosed. Let me get a little background on you. Are you married? Do you have kids? Are you single? Are you what are you?

Carly 3:37
Yeah, I'm married, and I have two kids. My daughter's eight and my son is three, eight and

Scott Benner 3:43
three, okay, yeah, in your extended family, your mother, your father, your aunts, your uncles, your cousins, does anybody else have type one

Carly 3:49
diabetes? So my mom's cousin does. But my issue wasn't necessarily hereditary for type one diabetes. Mine was actually that I had a total pancreatectomy, so I lost my pancreas when during, like a major surgery, and then woke up a diabetic. You are what they call type 3c I am exactly no one knows what that is.

Scott Benner 4:15
I know and believe it or not, I've lost count. There's been more than a half a dozen people on telling this story over the years, over the years? Yeah. So it's interesting to hear it from a different perspective. So you actually have type one in your family, but that's not why it happened. That's interesting. How about other I'm just gonna hit real quickly in that family. Do we see celiac? Do we see thyroid? How about you? Do you have any other autoimmune issues? Not that this one is, yeah.

Carly 4:41
So it started out when I was 14. They initially tested me for celiac disease, but because they had said at that time, my villa wasn't damaged enough for them to to diagnose it as celiac, they just said I had IBS. So I grew up with IBS for my whole life. Mm. I cut out gluten and things of that nature, because Celiac disease is in my family. So that was, well, when I was 18, I was still drinking beer and eating pizza and stuff, and I wasn't supposed to, but I did so, but celiac was something that was always on the radar. And then when I was just out of university, my mom and I actually opened a gluten free bakery, and we had that for about six years until I had my daughter. And so when we had the bakery, I actually did some dabbling in diabetic baking for some of our our clients, because those inflammatory diseases are so closely related. So now I kind of get to use my diabetic baking on

Scott Benner 5:41
myself. I have to tell you that sentence you just spoke might have been the most melodic thing I've heard in weeks. I did some dabbling in diabetic baking. I was like, oh, feels like the beginning of a jingle. Okay, so you have an autoimmune issue. Maybe you were gonna get type one anyway. No, I'm just kidding. So what was the surgery that led to this?

Carly 6:03
Well, it ended up that I started to get really sick in the summer of 23 so it was like, I just, I sort of almost felt like my body was kind of shutting down. I guess technically it was in some capacity. But I was like, just inflammation and constantly ill and not feeling well, but then it started to get to the point where I could actually point to my pain to, like, one specific location in my stomach, and I'm like, it's right here. This is where it hurts. And I think that, like, my whole life I've been telling and obviously, again, like, I'm not going to use names, but I was telling my family doctor that I was having issues like this. This is kind of beyond IBS. I'm almost certain it's celiac disease. And I kept getting disregarded and disregarded, and eventually got to the point where, when I got really sick in the summer of 23 I ended up going into emerge. And then that whole process started. They didn't ultrasound thinking that it might be kidney stones, just the way that I was pointing to my stomach. And so that ultrasound initially showed some issues, but they couldn't see what it was in my pancreatic area. So then it was CT, MRI, MRCP, and then I had four ercps. Three failed, and then the last one was because they couldn't my pancreatic duct was so inflamed. Sorry, this is like, really, TMI, but I'm sure you saw this. My pancreatic duct was so inflamed they actually couldn't even get the camera in there to see anything. So by the fourth ERCP I was at a surgeon in Calgary, and he was like, this, we just, you have to go in for surgery. There's nothing. There's nothing else we can do. So based on, like, for investigation, it's time for surgery, is kind of what he said. And so I remember the appointment very vividly with my husband. We went up together to meet with my surgeon for my pre op, and he was telling me, like, this is what I think is going to happen. We're really shooting for a Whipple. We really want a Whipple, but just so you know, it's possible you're going to wake up missing organs and a diabetic, and then from there, I kind of shut down, and I don't remember a bunch of the rest of the appointment, and then it was surgery, and, yeah, woke up, and then a lot of healing, big, big healing journey from that.

Scott Benner 8:22
Probably we'll get to that part. But let me ask you, yeah. I mean, did they ever put a finger on it? Like, was it like chronic pancreatitis? Did they call it something? Yeah.

Carly 8:34
So basically, when I was able to understand what my surgeon was saying after the fact, he kind of said, I think that you've had chronic pancreatitis for so long that it completely killed your pancreas. Like he said that he's never seen a pancreas like that in a 40 year old woman ever in his career, and he's almost retiring as a surgeon. So he was like, I just don't understand how it got to this point, and neither do I really, like I got, I just kind of thought that that was normal. Like, feeling like that was just my normal, is actually what I was told by my doctor, terrible. It was really alarming to find out that it, it had gotten to that point. And then you wonder, you know, had it been caught sooner? Is it possible that something else could have been done. Or, you know, I might not be a diabetic today. I don't know, yeah, but I try not to

Scott Benner 9:25
dwell. I was gonna say, is that hard not to

Carly 9:27
think about Yeah, yeah, but I, but I really, honestly do have a, I have a really positive outlook on life. I've got my kids to fight for every day and to show that you can kind of overcome any big thing that comes your way. So I try really hard to have that mindset. But definitely there's days, especially in the beginning, I'm like much better now, but I remember breaking down once because I couldn't have popcorn at the movies.

Yeah, that was it. I was it. I was done after that one.

Scott Benner 10:00
But what movie, if you don't mind me asking, Well,

Carly 10:03
I wanted to take my daughter to the movies, so, oh, I think we're going, what the heck were we going to I can't even remember, because it was just like, but we went, and I, I had the popcorn, and then I was like, all over the charts that night, like I couldn't get my blood sugars back in check. And then the next time we wanted to go to a movie, I was like, they can't, can't popcorn. Do anything.

Scott Benner 10:29
Hey, you get the same movies everybody gets in Canada or yours, just about like ice fishing. No, they're all ice fishing, nothing else. Yeah, you just take your kids to, like, animated films about ice fishing. Speaking of Canada, do you live in one of those provinces where it's hard to get in to see a doctor or easy?

Carly 10:47
Well, right now? So actually, I, because of this whole process, I was like, I can't, I literally can't see my family doctor anymore. I was just like, so livid and over it. So I had to try to find a new family doctor, and it took a

Scott Benner 10:59
long time, yeah, I'm, I'm trying to decide, like, because I've heard stories, depending on where you live in Canada, just like anywhere else, right, that there are places where you can say, like, Hey, I'm, like, here's what's going on, meaning, like, I will see in a year, yep. And there's places where that's not the case. And a lot of times, the way it's been put to me, and again, I don't really understand the system that well, but the way it's been put to me by people who live there is that it feels like that, if it's not emergent, if it's not going to kill you, then you're back of the line. Yeah, 100%

Carly 11:29
that's actually what she had said to me initially, when I started to get in that summer, beginning of the summer, and I was like, Look, I am like, not well, like, I really would like to see a gastro. And she was like, that's gonna take like, two years. Do you really want me to put in the referral? And I was like, yes, yes, I do. Yeah. Everyone who doesn't live

Scott Benner 11:48
in Canada remember that when you're complaining about your thing, nowhere is perfect. And I've just, I've had friends who have gone through things that they suffered with for a long time needlessly because no one would see them, and it would take pre, you know, I have a comparable story before I began to use a GLP, I was anemic, and I'd have to get iron infusions. Oh, okay, right, and I don't have to get them anymore. That's neither here nor there. But a friend of mine who is a Canadian or a Canadian, you say it any way you want. I know you said Provence, and it made me laugh. Well, you know, by the way, I said pro Vince, and five seconds later you used a P, R, O, Word where you went pro, and it didn't. I was like, she doesn't. She doesn't even hear it, but whatever. So my friend also needs an iron infusion. At the same time, I had one in 10 days. It took them a year to get it for her. Oh my for and with you being anemic, yeah, suffering the whole time. Oh, that's terrible, yeah? But that's the it just, I don't know, like, I mean, I'm not, I'm not picking on candidates everywhere. But my point was to bring it up that you said, maybe if someone would have seen this sooner, I wouldn't, you know, be using insulin right now and crying about popcorn at ice fishing films, and that's what made me bring it up, because you could be right. And, you know, it's funny, I recorded twice today. You're the second one, and the first person spent a lot of time talking about lost time, about the sadness of time. Lost hers was different in that she has an answer now, and she mourns the time that was wasted and you didn't have an answer forever, and now you're mourning the time that you lost moving forward, yeah, yeah, and needlessly for in both situations, by the way, yeah, maybe for you, but I mean, if taking you taking your chore, So okay, you wake up and what's the thing? Who breaks it to you? Your husband, a doctor. How does it go? Perhaps the best gift that you can give to yourself or to a loved one is that of comfort. And this holiday season, if you use the offer code Juicebox at checkout at cozy earth.com, you won't just be getting something that's comfortable. You'll also be doing it at quite a discount. We can talk about that in just a moment. Right now, I want to tell you that I use cozy Earth towels every day when I get out of the shower, I sleep on cozy Earth sheets every night, when I get into bed. I'm recording right now in a pair of cozy Earth sweatpants. I love their joggers, their hoodies, their shirts, my wife has their pajamas. And I know you're thinking, oh yeah, Scott, well, because they sent you a bunch of it for free, they did send me some for free, but I've also bought a lot on my own. So like I said earlier, Black Friday has come early at cozy Earth, and right now you can stack my code Juicebox on top of their site wide sale giving you up to 40% off in savings. These deals are definitely not going to last. Get your shopping done now or get yourself something terrific at cozy earth.com Do not forget to use that offer code. Juicebox at checkout, you will not be sorry. This episode is brought to you by Omnipod. Would you ever buy a car? Without test driving it first. That's a big risk to take on a pretty large investment. You wouldn't do that, right? So why would you do it? When it comes to choosing an insulin pump, most pumps come with a four year lock in period through the DME channel, and you don't even get to try it first. But not Omnipod five. Omnipod five is available exclusively through the pharmacy, which means it doesn't come with a typical four year DME lock in period. Plus you can get started with a free 30 day trial to be sure it's the right choice for you or your family, my daughter has been wearing an Omnipod every day for 17 years. Are you ready to give Omnipod five a try? Request your free Starter Kit today at my link, omnipod.com/juicebox Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox find my link in the show notes of this podcast player, or at Juicebox podcast.com

Carly 15:56
well because so I didn't do well from the surgery, so I ended up in high observation, and so I woke up, and then obviously, like, there's still, like, I have all the tubes and all the things, and I'm totally whacked out. I have no idea. And I swear I heard one of the nurses say something about a Whipple. So I'm like, Whipple, yeah, that's all I just, I remember saying that. And she was like, said something, something, honey. And I was like, okay, cool. And then she was like, Okay, well, we can't, we cannot get your blood sugar stable. Like, every time we give you painkillers, you drop dramatically and fast, so we have to stop giving you painkillers. And I was like, oh, okay, so this is gonna suck. And she's like, Yeah, this is gonna suck. And I'm like, All right. And she's like, until we can stabilize your blood sugars with your find a painkiller that doesn't drop you. So I think I like, I was in high up for like, the whole evening, and then it was into the next day, and someone said something to me about insulin. And I finally clicked. And I was like, wait, wait, wait, am I a diabetic now? And she was like, yeah. And then I was like, oh, and then that, and then that, and then it was Yeah. But I thought I for the first like, while I would save the first like, at least 18 hours. I totally thought that I, I was like, Whipple, whoo.

Scott Benner 17:21
I do, but you're also high on morphine at the time. Totally, you know, everything went fine.

Carly 17:29
Really, the nurses are like, Yes, honey, whatever, Whipple. And I'm like, Yeah, Whipple, did

Scott Benner 17:35
they talk to you in that accent too? Or do you know, I guess, right. So, okay, well, that's horrifying, yeah. And so you now you realize, but what do you realize? I'm very interested in the first days, right? Because what's your actual understanding of diabetes? You didn't even go through DKA or, like, peeing a lot or something first, you were just, like, my body covers my food with insulin, yeah, go to sleep. Wake Up Now it doesn't do it

Carly 18:03
anymore. Yeah, exactly. So I think that was kind of the biggest shocker. Like, I've been listening and honestly, like, I just just quickly to say that I found you right away, like, I found the podcast, and I found the community right away, and I've been like, listening to it ever since, and it truly helped me have a better understanding of a lot of things, and then also, like, not feel so alone and isolated, but I do have, like I said, my mom's cousin is a diabetic, and she handles diabetes very differently than I do. She is older than me, but she and she was diagnosed when she was, like, eight, or something like that. She's very meticulous and calculated and a perfectionist about her diabetes, whereas I am a little bit more lacks in how I approach it, my idea and my understanding of what diabetes was was a little bit scary because of how I've seen her live. You know, family functions with her scale, weighing her food. She doesn't have a CGM, so she doesn't use a CGM. It's just a personal choice for her, so still finger pricking for all of her meals. So that was my idea of a diabetic. And so I was like, is that what diabetes needs to be for everybody, or can it be, like, a little bit different. And then that's how, when I found, like, your the community, the juice back, Juicebox community, and then, like, listening to the podcast, I was like, you will listen like it's sort of the way you approach it, like it's sort of a science experiment, like you are, and Jenny said it before, you are a Petri dish. And you just figure, you just figure it out. Every

Scott Benner 19:38
day the person in your family did, they literally show up at like, functions, family functions with a scale, with their scale, you betcha. Wow. How much does the penguin weigh when you eat it?

Carly 19:48
Apparently it's like, Ebola is about 35

Scott Benner 19:51
yeah for the beak. Mostly

Carly 19:54
it was Yeah. So it's always interesting to see, like, how she approached, approached diabetes. So

Scott Benner 20:00
prior to your your situation, how did you see her? Like, did you think weird lady? Did you think, Oh, right on, it works for her. Like, how did she appear to you? 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/juicebox, 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 dash, 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 CGM 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.

Carly 21:34
So in this sense, like you said, I just, like, I have to be a little bit careful, just because, like, I know she's, I know she's gonna want to listen to this, yeah, but like, just in the sense, like I, I love her very dearly and I, but I've always seen her struggles, and I think that's sort of what stood out the most me, because she is just like, she is a lovely human being. She has this incredibly infectious laugh. So when she laughs like she just lights up a room. Everybody's laughing. She's just wonderful, yeah, but I always saw, to me, a pain in behind all of that, of like, just like approaching life every day, afraid. So she has a lot of issues with her diabetes. And I often wonder, well, I don't often wonder. I kind of, I know this, but I'm like, Just wear the CGM, man just put on the flip and CGM because, like, she's like, Yeah, I have lows like, all the time. They're severe lows, like, calling the ambulance in, like, crazy fits. Her husband's trying to hold her down. Lows. And then I was like, why don't you wear a CGM? And she was like, well, because it's going off all the time. And I'm like, this is going off all the time because you're low

Scott Benner 22:40
I am always fat, by the way. If she hears this, yeah, she is invited to come on the podcast. Okay, I would genuinely love to hear her side of like, like, because, because it occurs to me, while you're talking, is that she has a whole like, history and lifetime and experiences, and she's doing the best for herself too. Totally. I wonder what it would feel like to know how that appears from the other side. Like, I think that'd be an interesting conversation. But she also no pressure. She doesn't have to do that. That offers open. So, okay, so that's your feeling about type one diabetes,

Carly 23:13
pre, pre all finding out all of that stuff. Yeah, right, right. And

Scott Benner 23:17
now you have it. And how do you see her now

Carly 23:21
I have much more of an appreciation for what she goes through, like, you know, more sympathy and not that I didn't I'm a very empathetic person, like it's me and my mom were both like empaths to the nth

Scott Benner 23:33
degree. But may I say, Carly, I know you're a kind person, because when you got upset and tried to curse, you said, flipping Oh, did I Yes, the flipping CGM, you know, like, you were passionate, and you were like, Oh, the flipping CGM. And I was like, that's interesting. So, like, I know you're a kind person. I can tell from that you don't have to pre apologize for what you're saying. Like, I know you have empathy for people in your life. I'm interested. Like, how does it pivot for you?

Carly 23:58
To me, it was almost like, like, I understood before. I was like, Oh yeah, you have to, like, do all the things. But now I'm like, I don't know, because diabetes is so different for everybody else, and we've had really good conversations since I've become a diabetic, there's times where I just want to be like, just there's things, there's tools. Like, just utilize the tools. Like people have worked so hard to come this far for tech, for for diabetics, like, utilize it. I don't understand that component of it, but that's because I'm a tech person, like I said, like, I just switched to an iPhone so that I could get the I watch, so that all I have to do is lift up my wrist and I can see my and I can see my blood sugars

Scott Benner 24:42
in a world where that exists, you're wondering why somebody else wouldn't maybe totally try putting on a CGM. So when you said earlier that you see her care as more meticulous, and yours is not the same way. You're not saying you're not striving for low a 1c and low variability, like you're. Saying that you think the way you're getting to your end is easier than the way she's getting to her end.

Carly 25:06
I think my idea of how to live my life is but to be fair, I have two kids. She doesn't. They don't have kids. And so I think my goal is to show my daughter that, like, my son is only three, so he has no idea. He doesn't even remember me being in the hospital, sure, but for my daughter, I just want to show her that, like, you don't have to get like, super caught up in being perfect. You just have to do your best. And sometimes that means eating something and then being like, Okay, well, that didn't work. Let's figure it out, and then maybe we can do better next time. But I'm not gonna, like, freak out and then weigh it next time and then, like, write it down and make sure it's perfect next time. I'm gonna be like, hey, well, last time I Bolus, like, this ish I'm that I'm an ish person. That's the way I could say it. I do things very ish.

Scott Benner 26:03
I want to give you know, respect to people whose brains don't work like yours, but I want to keep going down this path. Here's how I think we get to my answer before I ask my question, what's your A, 1c, well,

Carly 26:14
it fluctuates. The last time I had it was 6.5 but I get really confused because, and I don't know if this is like a difference between the states and Canada. You talk about an A, 1c of like, 5.4 being like, really good. And so, oh, and I got my 6.5 I was like, Oh, man. And then, yeah, then my, my diabetic educator was like, What are you talking about? This is, this is awesome. And I was like, oh, okay, cool.

Scott Benner 26:44
No. So six, five is awesome. The reason, the reason I and, well done, congratulations. But the reason I asked, because when you're making the case for like, ish, right? And like, if you would have said, like, my one sees 11, I would say, Well, maybe stop with the ish. Maybe you ought to get yourself one of those scales and carry it around with you. Sounds like you don't know what the hell you're doing. Don't know what the hell you're doing. But if you're telling me that you're doing that kind of blend of lifestyle and diabetes, and you're having a six, five, a, 1c, outcome, I mean, do you have a lot of lows? No, not really awesome. What do you consider a spike? Like, where does your blood sugar get out really? Like, oh gosh, I got really high.

Carly 27:21
So when I first came out of the hospital, it was intense, because they said, like, type 3c are really prone to those fluctuations, especially highs. I'm not entirely sure why. That's kind of some more knowledge that I want to gain in that respect. But so I was getting, like, pretty high. I could get to like, 1617, 18. And again, this is different because I'm in Canada, like, because you say, you're always saying hundreds and stuff. And so then I actually, that's when I bust out my calculator. When I'm

Scott Benner 27:50
listening to break out your calculator you can do, there's gesintas You could do. Or you can go to my website under Support, a 1c and blood glucose calculator. And then I click on millimoles, because that's what you are. And what'd you say?

Carly 28:04
18, yeah. 18, yeah, yeah. My highest was I almost went into the hospital.

Scott Benner 28:10
And 18 is a 324, here in the Americas. Oh, okay, in the Americas, by the way, what are we like, 12 miles from each other? You sound like you're pretty close to the border,

Carly 28:19
right? Yeah, yeah. I am, yeah. I'm in Alberta. So just like, by Montana.

Scott Benner 28:24
Can I just tell people who are in the Wisconsin, Michigan area, their version of this sounds nicer than your version of it? And I don't know why, like, what? There's a harder the accents a little harder Michigan and Wisconsin than it is slightly north in Canada. There's something more melodic about it when you do it, I don't, I mean, I'm not coming down to anybody. You sound like what you sound like. But anyway, so you almost ended up in the hospital with an 18 blood sugar.

Carly 28:50
No, that 18 would be like, actually, for me, where like I would go for my highs when I was still in the beginning. I'm sorry, good, yeah, beginning, yeah. When I was still MDI, I would be my highs would sit anywhere like, you know, like, 14 to 18 ish, and then I'd be like, Oh, sucks. And I'd my husband would be like, God, are you high? And I'd be like, Mm hmm, because now he knows. So I get kind of cranky. But anyway, the time when I went well, I was in DKA, I think I just avoided the hospital. I managed it at home. But I was getting, like, higher and higher, 1820, 22 and then I was like, Okay, I hadn't done a site change yet. This was when I had just transitioned over to my pump, and I think I was on my pump for about a month, so I hadn't had to do a site change from an issue. And so I was like, what's going on? And I just was like, rage, Bolus thing in bed, just cranking insulin in and just like nothing and nothing. And so finally, I was like, Okay, wait a sec. Think logically. Stop. Think logically. And so I was like, change your site, drink some Gatorade, go for a walk. So I did all those things. And when I went to change my site, and I. Pulled the, like, the needle out, and the little sticky adhesive, I pulled it off, and insulin just started pooling out.

Scott Benner 30:09
It was collecting under your skin and not being absorbed. You think,

Carly 30:12
yeah, yeah. They fit, yeah. So there was, I think, like something, it was caught in the needle. I don't really know what happened, but I just know I didn't get any insulin. I think it was about

Unknown Speaker 30:21
12 hours. Oh, gosh,

Carly 30:23
and so, yeah, I just kept climbing, climbing, climbing. So I was surprised that, on top of all of that, being like, I pretty close to DK, if I wasn't already in it, I tracked down the paperwork that they sent home with me from the hospital for my calculations. Should this happen? Found my calculation, calculated what I was what I needed to manually inject, did that like, plowed through some g2 Gatorade, went for a walk and actually got myself down. Good for you. Yeah. I called in sick. I was sick for two days at home, but otherwise,

Scott Benner 31:01
yeah, oh my gosh, that's awesome, like that. You figured it out like that, and took all the steps. Even when you were probably cranky, you were able to

Carly 31:08
think about that very cranky.

Scott Benner 31:12
Can you tell people a little bit about it? Like, what happens when your

Carly 31:16
blood sugar gets higher? So for me, I like, I try really, really hard to not let it affect other people. I know that sounds silly, but it's just kind of the way that I am. So, especially with my kids, like so sometimes actually what I'll do my husband knows, because I just look at him and he's like, she's high, all right, whatever like or just make me a snack and get out of there, get me some sugar free chocolate. But with my kids, I just kind of will look at my daughter and I'll just be like, Dahlia, Mommy's going high right now, just a little bit irritable. Just give me a minute and like, I'll just give myself some insulin, and I'll start to come down, and everything will be all right. And she's just like, yeah, cool, okay. And then she just takes off.

Scott Benner 31:58
Okay, nice. What do they think about, I know you said your one child's a little younger, but the other one was a little older, like Mommy was sick in the hospital, surgery comes home, has this new life? What is that? Has that had impacts on them? Do you think

Carly 32:10
big time? Yeah, for sure. Because she was, like, just turned seven, kind of when everything started to go and we had to have this conversation with her, that I needed to go to Calgary and go like they couldn't do the surgery in my hometown. I had to travel for it, okay, not far, just a couple hours, but obviously I was away from home, and she had to stay back home with daddy and stuff, so she knew that this big surgery was coming, and my my actual heal time, I was supposed to be in the hospital for a month. I was supposed to be in for at least four weeks is but I pushed super, super hard and was released in 14 days, actually, 13, but she came up and saw me, and I was terrified for the day that she was coming up to see me. I still had a main line in my neck. So I had tubing in my neck, and then, like, was hooked up to, like, a gazillion things. I was really nervous for her to see me like that, because she sees me as like this, like, super human. She's always like, really put me up on a pedestal. So my main concern was her to see me like that. And she came in and we had a little cry and a little hug, and probably within 10 minutes, she was like, laying beside me with the remote the crappy hospital TV, watching cable and everything was like, kind of fine. And then I got to come home, and then I was kind of in bed for another couple of months easily. So lots of care. We had Home Care coming in. They had to help me with a lot of things, my stitches and all that kind of stuff

Scott Benner 33:41
I want to hear about that a couple of months you mentioned earlier that your recovery was slow. Was there a reason for it, or is that just expected for that procedure?

Carly 33:49
Yeah, the total pancreatectomy. So they removed from my surgery, they removed my pancreas, my gallbladder and my spleen, jeez. So the pancreas, because it was so sick, started to affect the other two organs as well. So they removed all three. And so the incision runs from my, like, high chest, my scar now runs from high chest all the way down to below my belly button. Gosh. So, I mean, it was huge, like, the surgery itself was huge, and they wanted me, like I said to be in the hospital for four weeks, and I was like, not having it.

Scott Benner 34:25
Hey, you have to take digestive enzymes now with your meals. Do, yeah, what else do you have to do? So

Carly 34:31
digestive enzymes with everything I eat, meals and snacks and my insulin, I eat really, really well. So it could have been due to the inflammation of being sick beforehand, but from surgery, I lost about 42 pounds. My gosh, so I'm like, quite lean now, and so I'm, like, constantly eating.

Scott Benner 34:53
Did you feel like you were What are you trying to tell me that you felt like your body was carrying weight because of just the general illness that you felt?

Carly 35:00
Oh yeah, I kind of, that's sort of how I feel. Like I saw this picture of myself in the summer of 23 that's like me and my kiddos and my husband, and we're just like, in the mountains, hiking and stuff. And I saw this picture of myself, and I actually don't like looking at it now, because I can see the inflammation and, like, just like, kind of like the illness in my face, yeah, and my body. And then I see pictures of myself now, and I it's funny, because I, you know, I have diabetes and I have these issues, but I feel healthier now than I think I have in a very, very long time.

Scott Benner 35:37
Going back, how far? When do you think this started to pile up on you for, like, not feeling, yeah, yeah, before you had kids, after you had them. Oh, yeah, a

Carly 35:47
decade, if not more, that I've been feeling like that. Yeah. Not Well, not this, not as sick as I was in the summer of 23 right? But, but progressively, yeah, getting kind of worse and

Scott Benner 35:58
worse. And remind me you talked about, like, overall pain that was too general to pinpoint inflammation. Did you think you were just a heavier person? Because you also said you ate really well, but you were heavier. So, like, Yeah, is that in your head too well?

Carly 36:13
I ate, I ate. Yeah, I ate well. Like, I mean, I didn't eat. I've never really eaten a lot of junk. And I think that's that goes hand in hand with being gluten free. You just, like, don't have that option. Certainly not like, 10 years ago, that's for sure. That's why we started the bakery. So I always, like, ate fairly well, but just could not lose weight. And I wasn't obese by any means. Like, I'm five four. And before this, I was like, maybe, like, 140 245 pounds. So it's not that I was like, overweight, but you could almost like, my body was just, like inflamed, like you just, there was inflammation, I think now looking back, yeah, you're

Scott Benner 36:51
saying that. Looking backwards, you just, you see yourself, and you think of that person just doesn't look well, yeah, totally. Did you think that at the time, not

Carly 36:59
as much as I yeah, not as much I was, like, just, why can't I just lose weight? Like I'm fairly fit, like I'm not going to the gym every day or anything, but I'm certainly not like, a stagnant person. I move and I I'm active and I eat, like, you know, like I said fairly well, certainly not to the extent I do now,

Scott Benner 37:18
yeah, but no, all that activity, like, you probably Captain a sled dog right team? That's like, you probably do you do all kinds of stuff, right? Like, so you're outside working. I mean, you got to climb over all that snow, and there's mountains, right, pick through, and I'm ice fishing, yeah, right. I'm saying you guys are really active. Do you actually, like, live in a place that, like, looks like New Jersey? Is that where you live? Well, I live,

Carly 37:38
well, no, I live in like, a it's like a, do you know, do you know of Calgary,

Scott Benner 37:42
Alberta? No, no. I know about the Calgary Flames.

Carly 37:45
And we're a smaller, we're a smaller, I would say we're like a smaller version of

Scott Benner 37:50
Calgary. Okay, so where I am, all right? But I mean, you are an active person recently, yeah, you got little kids you're running after and stuff like that. Yeah, yeah. They probably won't stop, right

Carly 38:00
with all and now, especially, yeah,

Scott Benner 38:02
why not? Why now, especially my three

Carly 38:05
year old is a little nut, like my daughter was always like, pretty busy, but my son is like, next level. Gotcha.

Scott Benner 38:12
I gotcha. That's awesome. I'm sorry, beyond having to take the digestive enzymes. Is there any other medications or things that you have to do now that are part of your daily care.

Carly 38:22
No, not really. Like, I, I think, because I choose to eat so well, I'm doing really, really well, okay. Like, I even, like, I had a my diabetic educator. We were talking, obviously, when I was released from hospital, far more often going from MDI to the pump, like they were floored for the pump, like, I'm part of what's called the pump clinic. So actually, my pump is covered, my insulin is covered, all that stuff's covered for me, which is amazing. I can't I can't imagine what it would be like to be a diabetic and not have coverage. But we would talk like, kind of all the time. And then moving to the pump, she was like, this is sort of unheard of, like, most people are, like, six months to a year to get a pump, and I had mine in four. So we would talk lots. And now we talk, like, we'll chat just to, like, catch up. And then she's like, how are you doing? And I'm like, good. She's like, a 1c. Is great. We'll talk to you in a couple months if you want. And I'm like,

Scott Benner 39:19
okay, cool. You just go, yeah. And then she's like, Yeah, and they're just kind of, I've never, ever said a I don't think so you don't think yeah, no, okay, we say

Carly 39:28
things like wicked awesome. So I guess maybe we are very similar to Boston.

Scott Benner 39:35
You say wicked awesome. You've, you've actually used a number of euphemisms while we were talking that I thought were funny today, I'm not gonna remember them all, but how was your direction? Like you said, you found the podcast pretty quickly, right? But what precipitated that? Why did you need to, I guess, like, what didn't exist that made you say, I have to go find somebody who understands this.

Carly 39:56
I think it was the uniqueness of my situation. Because, like you said. It wasn't like, Oh, you went into DK, you were in the hospital, then they told you, you're a diabetic. I literally, like you said, I went to sleep and I woke up a diabetic. And so I was searching for answers for people that might understand, like, nobody knows what a type 3c diabetic is. Nobody knows that, really. And that told me enough to say, like, if people don't even know what it is my doctor is telling me, just tell people you have type one, because no one else is going to know. So I was like, Well, how many other people had a total pancreatectomy? Why did they have it? So I think it was just like, I'm an answer seeker. I want to know. I want I like gaining knowledge. And so I I'm trying to think of how I found I think I just Googled, like, diabetic communities, and then stumbled across the Juicebox, and then loved all the stories. And then whoever facilitates the Facebook page, I had put my story forward, and was like, I wonder if there's anyone else. And she, like, immediately connected me with two other people.

Scott Benner 40:58
Was that Nico that did that for you? Yes, yeah, yeah. So,

Carly 41:02
and then, like, the things that Jenny says, I like, super connect with because I love, like, health and nutrition now, yeah. And so, there's just a lot of a lot of things that I connected with on a lot of levels. Well, that's awesome.

Scott Benner 41:13
I just want to say that there's a number of really lovely people who help with the Facebook group, and I can't thank them enough. They volunteer their time, and they're really, really incredibly valuable in a way that I don't think we can properly quantify.

Carly 41:29
Maybe, No, I totally get it. I like, I for a living, like, I'm admin support. I work at a university, and I'm admin support for a couple of departments, and so I understand that the work it takes kind of in the background that people don't always get to see.

Scott Benner 41:42
No, they're special people. They really are. I definitely couldn't do it by myself. Like, there was a time I used to, and then one day I was like, Oh, it got too big. Yeah, not so much. Like, I'll live here 24 hours a day if I try to do what I was doing before. And then there was, I got scared. I was like, Oh, I wonder if this will, like, find its level. You know what I mean, like, like, well, I work this out, and with those people's help, and, you know, I think we actually been talking about a lot today offline, but, you know, just sticking to the ethos of, you know, let people share their stories. Yeah, I think that's the most important part. I'm so glad it's helping you. No,

Carly 42:18
it, is it? And I've been listening to it for long enough that when you sent me the link, and I was like, Oh, it doesn't say the time zone. And then I thought to myself, well, it's got to be 11. It can't be one, because if we're two hours apart, that would put Scott at three, and Arden will be off school. And then I'm like, Oh, my God, you do because she's like, 20,

Scott Benner 42:40
you're thinking of her like she's in high school, right? Yeah, no, younger, younger than that, younger, yeah, yeah. That flips people out sometimes. The first time that happened, when the blog was first up, I used a photo of Arden at the on the like was the only real photo I ever used of her was just like the blog used to be called Arden's day. And, yeah, there's this little picture of her, like, super small, I think, in like, this yellow shirt. And people, it definitely was the yellow shirt because she had done a photo shoot for her children's hospital for their diabetes pamphlet. Okay, one of the pictures just came out really well. And I was like, Oh, I'll use that picture on the, on the on the blog. And then she got a little older, and she was like, Hey, I don't like looking like a baby on the internet. And I was like, oh, okay, cool. Like I said, but the header is kind of like, iconic. What if I could, like, and I had, like, an artist, like, just recreate it. And I was like, How is this? Like, it's not really you, it's just reminiscent of it. And she's like, Yeah, that's fine. And then that went on like that for a while. Then eventually, one day, I was like, I know that I thought of myself as a blogger, but I really make a podcast now. Like the blog's not really the same thing as it used to be. So I switched it. Basically, if you type in ardensday.com I think it just, it goes right to Juicebox podcast.com And nevertheless, like when all that changed, it changed in people's minds. Then years went by, and then Arden pops up in a photo somewhere, and people are like, whoa, wait. Yeah, that's insane, like that. She's a grown woman, in my mind. She's a two year old child in a little yellow shirt, right? And now you're showing me a picture of a 1718, 1920, year old person. Yeah? It flips people out a little bit. Yeah, that's really awesome. Can you like, nuts and bolts? Tell me what you learned that's been most valuable for you about using insulin? Like, what are day to day things that you do now using insulin? Yeah, that you took from the podcast that you're like, these are foundational for me.

Carly 44:36
There's, I can't remember which episode it was, but you were talking about how people are, like, just sort of released as adults, opposed to children, adults, more so are released from wherever, if they were in the hospital or they were whatever, and they're like, you're a diabetic. Now have fun. Goodbye, you know? And then it's like, we just have to figure. This thing out on our own, and so I think it was just the foundational knowledge. Like, I love the little the little bits. It's not called the sips. Is it called the small sips? Yeah, the small sip like that one was huge for me. I love that because it just gives you an opportunity to, kind of, like, start from those basics that you are not taught. And even if they were taught to me when I was in the hospital, I, like you said, I was so whacked out on morphine for half of it, I don't remember half of what they said anyways, yeah, so it was just building that foundational knowledge up again and to have that, and then also to be able to have those stories. And I think the biggest thing for me was it's not so much what you say, but it's how you say it. When you say, Be bold with insulin, it's not that you're saying, like, go out and like, Just give yourself a bunch of insulin and see how it goes. You're just saying, don't be afraid to try things and then build on that knowledge that you have. So I think for me, that's been the biggest thing is, like, just don't be afraid. You said, like, what's going to happen? You're going to try something, you're going to give yourself some insulin, you're going to go low, then you're going to, like, whatever, drink your juice and come back up, or you're going to go high and you're going to give yourself some insulin, as long as you're doing it in a safe, knowledgeable way, then do it so that you can figure this thing out, otherwise you're just going to continue to be scared or live in that same zone of being high all the time, being low all the time, whatever it is. So you

Scott Benner 46:29
found it empowering, yeah? Oh, that's awesome. That really makes me happy. It also makes me happy that the small sip series worked because, oh yeah. I mean, it's been out for a while now, and I've gotten good feedback about it, but I also put out a lot of content. So I think sometimes that doesn't really allow people to like share with me how they're feeling, because the podcast keeps going and they think they're keeping up. I don't, but I have gotten a lot of good feedback about it. That was really, you know, it's funny you brought that up, because that's another example of how the Facebook group helps the podcast, because the quick lineage of that is we made the Pro Tip series first, right? And a person that helps with the Facebook group, Isabelle, tells me, one day, I think there needs to be something more intermediate than the Pro Tip series, like something for beginners. And I was like, Oh, okay. She said, I find some newly diagnosed people seem overwhelmed by the pro tips. And I was like, Oh, well, we'll do a bold beginning series and get people started. And then at some point I had the idea. I was like, you know, there's enough ideas in this podcast. They're like, foundational for people, really. And what are those ideas? Because I've learned that what strikes me isn't always what strikes you. Like we just, it's important to put all the information out there and let people, like, pick and choose from a kind of a la carte and decide how to build their own, build their own diabetes care, right? Yeah, out of these ideas, like, you take the things that work for you, that makes sense to you, that speak to you, whatever. But how would I know what those are? How would I know how other people take the podcast, right? So we put out the call to everybody in the Facebook group and just ask them give me foundational moments from the podcast for you. Yeah,

Carly 48:09
I think it's not even so much for the people listening. It's who I'm also asking to listen to this content for not just myself, but just say so, for example, my mom was terrified when I was diagnosed. My mom was terrified, like, she's like, You have to live like this. She was heartbroken, like, you have to live like this now, and I hate this, and it's so terrible, like, we're very, very close. And so I told her, like, just be open. Be honest with me. Tell me your feels. You're allowed to feel them just as much as I am. And then that's what she said. I'm heartbroken for all of this, and I also feel so lost. And I was like, Okay, listen, if you want to take this, and it's funny that it's called small sips, because I said, take this in small sips. Listen to this slowly digest this material, so that you understand when I come over and I'm like, Hey, I got a Bolus whatever, or, like, I'm using terminology that scares you because you don't know it. Use this information to empower yourself, and then you will feel more confident in and maybe less nervous about me and what I'm going through.

Scott Benner 49:15
Take away some of her sadness. Maybe

Carly 49:17
Yeah, exactly like, it's just yeah, just listen to it and kind of gain that knowledge, because she's very much like me and just needing kind of a knowledge base to feel more comfortable.

Scott Benner 49:26
Are you telling me that that series not just helped you with your management, but it helped your mom to be more comfortable about what was happening to you? Yeah? Goodness, you know, I laughed off the other day when a woman emailed me and said she was going to nominate me for a Nobel Prize. But now I'm thinking, do it. I'm gonna take that. By the way. I don't think can a regular, how do you nominate somebody for a Nobel Prize? I don't think,

Carly 49:48
I don't know, can't like, I would nominate you for a Nobel Prize.

Scott Benner 49:53
You're Canadian. I don't think they'd even listen to you. How do you Yeah,

Carly 49:59
how do you. I know there's people that have gotten it that you're like, what?

Speaker 1 50:02
Really, really? Yeah, this could happen. Yeah, I think so, oh my God,

Carly 50:07
because I'm gonna say this, but again, like I'm in Canada, and so we see things differently in regards to people in power in the States right now. But didn't somebody nominate themselves for a Nobel Prize? I think

Scott Benner 50:21
you're thinking about a I think you're thinking about a Webby Award. It says here, you generally cannot directly nominate someone for a Nobel Prize, by the way. I want to just be clear, I don't think I deserve a Nobel Prize, as most are by invitation only. Instead, 1000s of qualified individuals like professors, previous laureates and members of the National assemblies are sent invitations by the Nobel committees to submit candidates for the following year's prizes. Okay, I don't feel like this is

Carly 50:49
gonna happen. Hey, listen, you gotta dream big.

Scott Benner 50:53
What she said is just, you know, just a nice compliment. I didn't really think anybody was getting nominated for anything, but as you're talking about it, I do want to take a second and say I'm really happy that that worked that way for you, and then I'm not gonna lie to you, I'm a little personally impressed, because I wish you could see how I actually make the podcast. You just

Carly 51:12
like, are you hanging out in your basement, full studio and stuff? Now

Scott Benner 51:17
it's a spare room in the house. My point more is about the way it's put together, which is just, it's me trying to sit back and absorb what I'm hearing and what I'm seeing online, and trying to imagine other ways to help people.

Carly 51:35
Yeah, and that's it. It's not necessarily what it's not how you're doing it. It's what you're doing. There's no

Scott Benner 51:42
big plan. Is what I was saying, is what I would have said. There's a whiteboard. Is a six by four whiteboard with my scribblings on it. And I stare at them until one of the scribblings makes sense to me, and then I give it a shot. So, like, here I'll give you an example, so that people can, like, timestamp this. If this ends up happening, it may not right? But if this ends up happening a year from now, you might hear me making more references that are rooted in stoicism, for example, right? Because I read a book, and then I dug a little more deeply into it, and then I started seeing that like, oh, a lot of these like, original Stoics, they have feelings like, like, I have, I have no formal education, right? Like, so I didn't know that somebody had said this hundreds, 1000s of years ago. I didn't know that this is how some of the Greek I

Carly 52:30
was just gonna say, are you

Scott Benner 52:31
talking like philosophical? Yeah. Like, like, philosophy, like I actually said to my wife last night in a moment of sadness, maybe I should have gone to college. I think I would have enjoyed getting a philosophy degree. Cool, and she's like, well, you still can. I was like, I don't know how you mean that I'm working. And I said, I'm I'm gonna just dig into it more on my own, like in my personal time, yeah, but I might have enjoyed that. Like the person I am now thinks that I would have enjoyed that. I don't know if the person I was then would have been like, what am I gonna do with this? Or if I would have been too busy thinking, how do you make a living with this? Like, please don't waste my time. It's interesting to look at messaging that is so accurate and powerful that it reverberates through not just generations, but through time, right?

Carly 53:16
Yeah. Well, that's what I do, like, so I help students figure that out because so I'm admin support for at the university. I help the Geography and Environment students currently, right now, I support Geography and Environment Women and Gender Studies. And then my very good friend, who's admin support for philosophy and anthropology, we have, like, mutual students. And so I see it all the time, these, these lovely students with great big ideas and, like, kind of an understanding of life that's just a little bit beyond, say, like my science students and whatnot. I always thought it was really cool. I've always loved philosophy and things like that, so, but I'm actually changing, well, not careers, but I just got a new job offer last week. Oh, congratulations. Are we happy about it? Because of everything that's happened to me is why I applied. So I'm actually moving over to, it's our MediCal program. Awesome.

Scott Benner 54:06
Good for you. Yeah, and it's possible that during my hot showers or quiet moments or whatever, that one day I put together, hey, there are these kind of, like, again, foundational ideas in stoicism that I think might lead people to who are struggling with chronic illness to find maybe some stability or something, and maybe I'll find a way to mix it into something. Or maybe I won't, like, I don't know, like, my point was that I don't know how. I don't really know how to quantify or qualify how the podcast gets built out right, other than to just say that it's me existing in this space, talking to all of you, and trying to wonder about things and see what happens.

Carly 54:47
So as it evolves, yeah, and as it has evolved, that's what I think is so cool. That's why it's been interesting actually, to kind of binge through it as it were, like, I know you've been doing this for so when did it start? How long have. You been

Scott Benner 55:00
January 2015, this is my 11th full year of making the podcast

Carly 55:04
nice, so in 11 years. So I've been listening to 11 years worth of content in a super condensed timeframe.

Scott Benner 55:11
I must change drastically, but I bet you don't notice it, though, right? Because, no, not really. You're growing with it. Yeah, that's interesting, isn't it? Isn't that awesome? Like, I find that fascinating. I wish we could have time to do that with everybody, yeah. Like, how cool would it be if you could spend a month or six months gathering up an understanding of a person in your life? Oh, I would love that. Wouldn't that be neat? Right? Like, if you could, if you if your mom had been making a podcast for the last decade, and then you got to sit down and listen to the whole thing.

Carly 55:45
Yeah, I would be floored. I would I would love it. They have a thing now. It's a book like, so it says on the front it says something like, I already know what you're gonna say, yeah? Like, Mom, I want to know everything about you, or whatever, yeah. And then they just spend however long, like, just writing everything, you know, like, my dad tells me stuff like, Oh, this one time when I was, like, 16, and you're like, yeah, like, then you could read it all as if it was like a novel. I think that would be so cool.

Scott Benner 56:12
Okay, moms to fill in for families. I'm gonna get one of those for my

Carly 56:17
wife. Yeah, I know. Just start writing in it now and then. Yeah, cuz I

Scott Benner 56:21
have a podcast. They, if the kids care about me, one day, they can just listen to this. I mean, it's called, is it like, I want to have your story, mom or something? Yeah, yeah. I'm gonna, I'm gonna. This is a nice gift. I'm in charge of Christmas this year again. No, no. It almost happened last year, by the way. It's not, let me just be clear, in case she ever hears this, she's never giving up control

Carly 56:42
of Christmas. No, she's not. I can guarantee you that it's

Scott Benner 56:46
just the thing she says to me when she gets frustrated because she doesn't think enough people help her with Christmas. Okay, I know what's going on, but that's not the point. The point is, I got to be ready, right? Because she's like, Well, fine, you're in charge of Christmas. I said something like, what did I say? I'm like, Well, everybody's getting $500 then we're done. Totally, yeah, you're all just gonna open up a card with cash in it, and then we're gonna go to the movies, and then you're gonna be pissed. But I can't really do that. I gotta come through.

Carly 57:12
What if you actually, like, throw down for Christmas and you get everybody, like, the perfect gift, and then she's like, Oh,

Scott Benner 57:18
you see that this has to happen Carly, because I am generally thought of as not a details person. And when I go shopping for people, like, I'm more pragmatic about gifts, yeah, I'm not as good with like, oh, somebody would love this. I'm like, Oh, they could use this, or they would enjoy this. Or, like, it's not I'm not as good with the like, I don't know, everybody wants a back scratcher. I'm not as good with the flowery part of gift giving, right, right? You know? Or when I do something, it like, everyone's like, ah, like you, son of bitch, is all you. Although I want to, I want to say this. I never said this before. I want to give my wife, her, her. What do people say now, flowers, that feels like a thing. It's gonna go away pretty quickly. But my wife, one year got me a squatty potty, no way for Christmas, and I opened it up. And part of me was just absolutely insulted. I was like, This is not a Christmas present. This is a thing you pick up on a shopping trip. She's like, you're gonna love this thing. Shut up. Blah, blah, blah. And I was like, I'm insulted. And just between you, me and everybody else listening. I love school. I think everybody should have one.

Carly 58:25
That's right. So RuPaul actually, like, who I like, adore is, like, one of their spokes people for squatty potty, yes, yeah. And so I know about them. And actually, it's really funny that you say that, because one Christmas I got my husband. It's called a something pushy, and it's like, like a bidet, basically, that you install in your toilet.

Scott Benner 58:47
Oh, she got me that one time, and I made her take it back. I don't know, but I was, may I just sound spoiled for a second? I was like, I don't want an ad on bidet. Give me a bidet or gives me nothing. Get me a bidet or nothing. I don't want to be treated like this. I don't turn into a fancy white lady often, but that was one of the places where I did it. I was like, I do not want an ad hoc bolt on piece of plumbing running across the floorboards bidet. I was like, you either get a plumber in here and get me a toilet that shoots water up my or you don't love me. And by the way, we don't have a bidet. So I think I know where that happened, where that got cut off that. I also don't know if I would want it, but I put up a pretty big I almost said, stink, but that's just such a ridiculous point. I'm not gonna do it. Yeah, I was like. I was like, I don't want some bolt on bidet. This is not okay with me.

Carly 59:43
Yeah, ours still isn't installed. That's why I'm left. Of

Scott Benner 59:46
course, not what. It's one of those things that sounds like a good idea. So you start looking at running plastic tubing across exactly, wait, I gotta tap into the water like I'm not doing that. Stop it. Listen. I. To put an end to a lot of business ideas. In the first meeting, I'd be the guy in the room that goes, no one's gonna tap into their pipe. Forget it.

Carly 1:00:08
It seemed like a good idea at the

Scott Benner 1:00:10
time. Well, yeah, not for nothing. I've talked to people who have used them, and I like, I think I'd like it. Rick, you know what I mean, but like, but not, I don't want to. I almost said half. There's so many puns coming out about this that I don't mean, nevertheless. All right, so listen, you doing okay? How you feeling? Like, what's the year later, somebody went into my body, yanked out my What did they yank out your pancreas, your gallbladder and your spleen? Yeah, I don't even know what a spleen does the gallbladder, you know? I

Carly 1:00:40
mean, I know I didn't either. Actually, it's funny, because I didn't actually know that they took those other two organs until two months later. Hey,

Scott Benner 1:00:48
you know what I would make fun of you, except Arden had her tonsils out recently, and a few weeks later, she goes, Did he take out my adenoids, too? And I went, I don't I think what I was like, I think so. And she's like, You don't know. And I'm like, you don't know. She goes, and I said, No, let me stop you. I'm like, he definitely did. And I went back to the and I realized I was I got sick the day I took her to that first appointment, and I was woozy in that appointment, and didn't realize that I got sick later that day. So I do have a bit of a of a reason for that. But nevertheless, she asked me, what did they what did they surgically remove from me? And I was like, I'm not 100% sure thing in your throat, yeah. And so we yanked out the paperwork, and I was like, there's a big, long word here that I think means both. And I said, I think this is what happened. We looked up, and sure enough, she had both taken

Carly 1:01:44
up. That's exactly what happened. Because when I said that, I had that pre op assessment, and he started talking about things, and then I sort of shut down after he said something about losing my pancreas and a diabetic, I just sort of went and I don't really remember, but apparently that's when he was kind of explaining what a total pancreatectomy is. And so then after the surgery, they needed to see me back up for like a post, post op checkup or whatever. And then they sent me the, just the write up the post op report, and I'm looking at it, and it says, you know, this normal, that normal, whatever. And they had checked my pancreas and found some tumors and things of that nature. But then it said pancreatectomy, and then spleenectomy and one other word. And I was like, whoa, whoa, whoa, what are these other two? So I phoned my surgeon, who was just lovely, and I'm like, Hey, Dr, blah, blah. And he was like, yeah, no, I took all three. And I was like, Oh, all right, awesome. Cool. Well, that would explain the incision size, but yeah, so I didn't actually find out for quite some time after, which was funny, but it just means I have to be careful about blood infections with my spleen, stuff like that. Otherwise, it's fine. Yeah, I know that's

Scott Benner 1:02:55
probably a thing that people listening are like, Oh, good. You let somebody do a surgery on you and even know what they were doing, like, but you I think it's important, by the way, important to point out for people who are listening to this, who are in charge of giving people, you know, news in a medical setting, that you were told something and you just zoned out. Yeah, I was in shock, for sure. Course, you are right. Like, somebody just told you, like, there's a chance you're gonna wake up and have type one diabetes, basically, and you're gonna need insulin, blah, blah, blah. And then they're like, Here, here's a lot of other important things you need to know. And that happens, by the way, when you tell people, like, Hey, your kid has type one now, and then you start telling them other things in the they don't hear you, yeah, totally. There's a buzzing in your head at that point,

Carly 1:03:39
yeah. And I know I've heard, like other people that you've interviewed say the same thing, and I related on, on so many levels, but it's, it's true. It's like, what I what I would say to people, is, for my most important thing is, God, that just advocate for yourself and in the medical health system, like, don't just take people's word for it. If you feel like something is wrong, push and, like, just try to get answers and just don't stop. Because I that complacency, I think, is kind of what got me to where I where I am.

Scott Benner 1:04:11
But you beat yourself up a little bit because you think you could have pushed sooner, yeah,

Carly 1:04:16
maybe, yeah. I guess that's one of the things. But I'm also working on, like, I believe in, like, making sure you have the proper supports and things of that nature. So I definitely like talk to a therapist about, like, it's like a medical health, medical trauma therapist, and she's fantastic. And so she's really helping me and giving me some big tools about, like, letting go of putting that back on myself.

Scott Benner 1:04:39
I was hoping you're I actually was gonna be my next question. I had a dumb joke. I was working up about a polar bear who was gonna get to that, but I just, you just said it so I know there are no polar bears in Canada. People who are Canadian have come on and told me that also you don't have penguins. I don't know if you

Carly 1:04:56
know that or not. Oh, well, we do. They're just at the zoo. Yeah,

Scott Benner 1:04:58
that's what you had. Guys. End up saying, but I'm saying like, they don't natively walk around there. I thought for sure they did at one point and not, not the case. But some people do have sled dogs. That's not a that's not a thing I made up. Yeah, there are people who ride around on horses called Mounties.

Carly 1:05:15
Oh, yeah, for sure. Yeah. There's even a dude that rides a buffalo in a small town that's like 30 minutes away from where I live. He just like rides. He rides it to go get groceries. Really, totally true.

Scott Benner 1:05:29
And no one should ever forget the girl that came on that was a can can dancer in the Yukon. That was maybe one of my favorite Canadian stories, because I tried to joke with her. I was like, would they just sit there and, like, throw gold coins at you? And she got quiet, and she was like, Yes. And I was like, Oh, my God, I was just kidding. It's my favorite part when I say something stupid and people go, No, that's actually how it works. That's crazy. All right. Have you ever lived anywhere else except there? Or do you ever wonder about, like, living in maybe, like, more of a No, I don't know. Like, you know,

Carly 1:05:59
I like it because it's, like, a it's, it's really a good place for families, because we're, like, small enough that I can get across town in like, 20 minutes, and then we're close to some things, like, we're pretty close to Calgary, if we want to, like, go and do things like that. I lived in Ontario and I was little, but I don't really remember. It's still, like, just, you know, yeah, young and don't remember that, but,

Scott Benner 1:06:21
well, this was lovely of you to do. I appreciate you coming and sharing this with me. I want to ask if there's anything that I didn't ask you that I should have.

Carly 1:06:30
I don't think so, but I was gonna say, and you might be like, what? And maybe I shouldn't, but my husband actually has a polar bear skull.

Scott Benner 1:06:40
What? No, just okay.

Carly 1:06:44
I thought you were genuinely shocked, because I think it's pretty strange. I don't have it in my house, but he's a My husband's a tattoo artist, and he does like artwork on things like that, like, like deer skulls and like weird things, like badger skulls and weird stuff like that. And he has a client that researches polar bears, and she was up, she's in like, so it is in Canada, like in the Northwest Territories, and she researches them. And they had a polar bear die of natural causes, and she actually brought it back and for him, and he has it. How

Scott Benner 1:07:21
big is? So there you go. It's huge and but you don't let it in the house. God, no. Is it scary or creepy?

Carly 1:07:28
Or, I haven't actually seen it yet, and this is where it gets even grosser. So you have to, like, have them cleaned properly, yes.

Scott Benner 1:07:36
And bugs eat. That's how they do it. They put them in bugs, right? Like, yes, yeah. Like, super worms, or those kind of things. Yeah, I know about things. Go ahead. So there's a

Carly 1:07:45
dude in town that does that, and so the skull right now is with this gentleman in that process.

Scott Benner 1:07:52
When you said he does that, you mean he owns a bunch of bugs and a tub,

Carly 1:07:57
it's so gross. Like, yeah, yeah. I found him because we had a bearded dragon for like, 12 years, my little my little beardie, and she passed away. I'm sorry. And because my husband does artwork on skulls, I had this crazy idea that, instead of I didn't want to just bury her in the garden or do anything like that, I wanted something to be memorable, and to have a keepsake of her forever. And so I asked my husband if he would do an art project on her skull for me so that I could put it in like a shadow box with, like a bunch of flowers and stuff. So I had to find someone that I could give her to that would do this process for me. What do you Google to find that? Oh, my God, it was such a process. But I found this guy, and so he did this for us, for our bearded dragon. And then when my husband got this polar bear skull, he talked to this guy, and he's like, I've got this thing. And this guy was like, You have got to be me.

Scott Benner 1:08:57
Wow, yeah. You were like, I got a guy that can do that. Yeah? Seriously, what do you like? Try to imagine everybody you want to take the carcass of something somewhere and have it clean down to the bone. What do you Google to get that done? Do you see what I'm saying? Ridiculous,

Carly 1:09:12
nervous. Yeah. I'm like, How do you do this without having, like, your thing flagged? I

Scott Benner 1:09:17
have two. We're done, but I have a question. So anybody that doesn't, anybody that doesn't have any interest in keeping a bearded dragon, you can go now or hit skip ahead a couple of times and listen to the ads. For me, the biggest complaint I hear from people who have bearded people love their Bearded Dragons, but people say that their excrement smells terrible. Is this true?

Carly 1:09:37
Yeah, yeah, yeah. Well, I mean, we were obviously kept her very, very clean. But yes, it's kind of gnarly, because it's like, more like bird poop. Yeah, yeah. Have you

Scott Benner 1:09:47
seen the girl online who taught her bearded dragon to poop in the toilet? What? I swear to you, it's awesome. Due respect to her, I know how hard it is to make content and keep it for people want to keep coming. Like, so she does, like, a little overreaction to the but she takes, I don't, I don't, she sees the thing when it gets a little puffy, yes, yeah, it kind of comes to her at the at the front of the cage, like, hey, it's time for me to shine. And then, like, takes it to the toilet, holds it over the toilet, and records it. And during the recording, you hear like, and then she's like, and then the girl's like, and then they think the toilet, and then she wipes it up and goes no way to God, yeah, she's a lovely girl. I mean, as far as I can tell from watching her YouTube shorts, I

Carly 1:10:34
said to people, and I was like, I mean, I have no idea. They're like, Oh, what are you going to talk about? And I was like, if I'm being completely honest, I don't know, because things happen very fluidly on Scott's podcast. So now I can say we started talking about diabetes and ended up talking about,

Scott Benner 1:10:52
yeah, exactly. So I don't know if people know this about reptiles, but like, some of them don't urinate,

Carly 1:10:59
right, right, yeah. Because, yeah. I mean, we can get very technical, but yes,

Scott Benner 1:11:04
they pass something called a urates Totally. When they go to poop, first a piece comes out that's white, and that's them dispelling their urine, and then the poop comes afterwards. Yeah, exactly. And you have to make a decision about how you're going to clean that up. Like, are you going to be one of those people's, like, every time it comes out, you're going to go in there and place it up and change, like, substrate or something. Or are you going to do what I do, which is, I have my chameleons are over a dirt floor, and then, and then in the dirt live basically like pill bugs, like Roly polies, oh yeah, isopods, those live in the dirt, and then they come out at night and eat the waste. Oh, no way, your isopods do that. Yeah, that's what they're there for now, once in a while, like my the guy who's looking at me right now, he is my Parsons chameleon. He's eyeballing me right now because I didn't feed him yesterday. And he is like, you're talking about my links, my man. It is 230 and I have not had a roach yet. Today is how he's looking at me when he's on a roll. His crap comes out like an inch and a half or two inches long and maybe an inch around. I don't even know how it gets out of it. And that thing, if I'm in the room, I pick it up and throw it away. Oh yeah, for sure. And I want to be clear, I flush it. I'm not a monster. I don't throw it in the garbage. And for those of you who throw dog or cat excrement in the trash, I want you to reconsider your life. Okay, the toilets right there, for God's sakes like I'll take it out, because I don't want to be in the room with it, because it's horrifying. But if it pops out at the wrong at the right time, and I'm not in here, it's gone in, like, a day while, yeah, the bugs just like, eviscerate it.

Carly 1:12:52
So when I'm when I'm ready for another reptile, I will keep isopods in mind.

Scott Benner 1:12:57
Contact me about what you'll do, because I have thoughts. I'm gonna tell you that right now I have, I don't think I can ship them to Canada, but I have Sri Lankan pygmy lizards. So these little, tiny lists are so cool. I love tiny one, very little, very pretty. And I also am doing a have, like a desert setup with geckos in it. So, yeah, they're very these little, like, communal geckos, that they're just awesome. So that's it. And then I have my chameleons.

Carly 1:13:29
Well, that's how I fell in love with with my beauty. I got her as a baby because I went in and was like, I'm not leaving without you.

Scott Benner 1:13:35
Yeah, no, no. They are hard to look at and ignore. They're very popular in the pet trade and in the community, probably like overbred sort of like leopard geckos and stuff like that. There's maybe too many of them are, yeah, Ball Pythons. Another thing that, yeah, you don't like a snake. No, you know what's interesting. So when I go to my guy to get my street, my guy to get my Sri Lankan pygmy lizard, which, by the way, shout out to him, Frank Payne. Living Art by Frank Payne is just go check out his website. But we live close enough to each other that like he'll do like a reptile show, which is not a thing, and I'm not casting aspersions, but not really a thing I would do normally, right? And but I'll meet him there, because it's, it's an easier drive for me, and I got to pay the 10 bucks to go in. And I figured I paid the 10 bucks I'm gonna walk around. And I walk around and there are so many snakes, so many I'm like, No, everyone's like, they're not gonna sell all these snakes. Like, what's gonna happen to them? Like, that's all I can think about when I'm there, I'm like, there are 1000s of snakes in this room. They're not gonna sell every one of them.

Carly 1:14:45
Where are they gonna

Scott Benner 1:14:46
go? Yeah, what are the what? Also, I've never held a snake before, and I don't think I ever will, to be perfectly honest with you, and I don't know why or why not, I'm not scared of them anymore, like being around them has made me like. Pretty chill about it, but like, yeah, not a thing I'm up for. But oddly enough, when I watch my chameleon move around, I do realize I watch his tail a lot, and there's something about his tail moves just like a snake, right? Because it's like a prehensile tail. These are words you should look up if you don't know them anyway. And my other as I'm shouting people out. I will also shout out frams cams.com, if you want a panther chameleon, frams cams, rams cams, they have a connection to type one diabetes. They breed really beautiful chameleons. So, oh yeah, I won't tell you their connection, because that's their personal stuff. But like, okay, they have a connection to type one and if you're looking to get a panther chameleon, you should check them out. They're awesome. These are not paid ads. These are just people I think are lovely.

Carly 1:15:44
So yeah, I think I don't I can be around snakes. I think I was, I was far more afraid of things when I was younger, and now, as I'm older, I'm not as afraid. I could definitely be around like a smaller snake, but like a Python, like a big snake, there's no way if it was out of its cage, if it was out of its cage, I would probably be panicking.

Scott Benner 1:16:04
I don't want to be bit by surprise by something. No, that's okay. Yeah, thanks. These chameleons are not gonna bite me. These little like my little gecko and like, they're not gonna bite me, like, my bigger concern about having a snake other than the fact that they're not actually that active. So I don't know how great they are as pets like to begin with, but, but that aside, I don't want to make a mistake one day, or move too fast, or forget that my hand smells like a mouse or something like that, and then look down and see a snake holding on to me. No, no, thanks, right? I wouldn't want anything biting me, to be perfectly honest, right? Like so, I'm sure anybody who has a snake is thinking, Scott, there's probably some simple steps you could take that. You could take that wouldn't happen. And I God bless you. I think you're probably right, but you've found my line is what I'm saying. Now, having said all of that, if I were to get a snake, I actually do know the kind I would get.

Carly 1:16:53
What would you get? The small snake? I'm assuming, well,

Scott Benner 1:16:57
for sure, they're small. Like, I don't want anything too big, like, because that would freak me out. Also, I'm never getting a snake. I just want to say, want to say, and now I realize I can't think of the name of them. They're, Oh, I feel like an idiot. Are they the white ones? You just said White

Carly 1:17:11
rainbow. They're, like, really beautiful, iridescent. Like, there are some snakes that are absolutely beautiful.

Scott Benner 1:17:18
Yeah, no, I 100% believe that too.

Carly 1:17:21
Yeah, I still don't know if I want to hold it. They can be beautiful from afar, yes, but it but in, like in Alberta, where I am, we have rattlesnakes, oh, and so you have to be really careful. We take the kiddos down to the like, we call it down to the coolies to walk around or whatever. But you have to be careful at a certain time, because you'll hear them, yes, they'll start rattling at you, and you have to get the kids out. Also at the University, where I am, we have, like, a big patio where you can, like, go and sit. It's ground level. You can go and sit outside in the summer and have your stuff, but we have it taped off on the far right corner, because the Rattlesnakes go out and

Scott Benner 1:17:59
bask. Yeah, yeah. Listen. And I've heard all the people tell me, like, look, rattlesnakes aren't gonna bother you. If you don't bother them, it's all, it's not the they want to get away. I believe you, I don't want to get bit by one. I'm not gonna go eat my sandwich beside him. Yeah, no. And I know there are people are like, Oh, look, they're fine, and they're beautiful. And I've seen some rattlesnakes that are beautiful. I don't care. I don't because, again, I just don't want to get bit like, that's the thing. And I know rattlesnakes are poison. I don't know if they're poisonous or venomous, venomous. I'm not sure the what the distinction is. And I know there's, you know, anti venom, or whatever, you'll probably be fine if you get to I just don't want to be bit by something. Having said that, the cutest little snakes are called Hognose Snakes. Ah, okay, if you've never seen them. They are kind of adorable. All right, hodner, snakes, Cognos, I don't odd knows again, but what you hear from people is like, you get a nice winner, maybe you don't, what if I maybe I don't. What if I get something that lives 25 years, that maybe

Carly 1:18:54
isn't that nice? Yeah, exactly. Then what you got to live with this thing for 20 years? I already am married. I don't need that. You understand my my daughter already says things like, when Zoe dies, she whispers it to me, that's my dog. She's right beside her. When Zoe dies, can we get a chameleon? I'm like, Zoe's right

Scott Benner 1:19:13
there, and she's looking at you like she can super near you. Okay. Also my suggestion, if you're going to get a chameleon, depends on how much space you have, I guess, and what your level of desire is about modulating humidity for things, I have to tell you, like, if everything in this room had to go and I could only keep one thing, it would be really hard not to keep my Parson's chameleon. He's really kind of awesome, okay, and like a dinosaur, not handleable. It's not a thing you would handle. Oh, you don't handle him at all. No, he's been on my arm twice the day I got him, and recently, when I had to weigh him, he I think he got confused and walked on my arm. I think he was like, Oh, what's this? And then he got on me. He was like, This is not right. But then he hung out. With me, okay, for a couple minutes before I put him back. The little ones though, like, if I'm being serious, for people listening, like, if you just want a little lizard, like something that's not so fast that it can just get away and is manageable in a smaller enclosure, it can be really nice, like, just to kind of watch them live and exist and stuff like that. I love that, yeah, but it's hard, it's hard, it's hard to ignore how cool he is, although, having said that, my panther is blue,

Carly 1:20:27
so like, you're kind of like you're what you think of chameleon. When you think of a chameleon,

Scott Benner 1:20:31
yes, it's what, it's what you think of. More of when people think about chameleons, he is super active. He runs all over the like, I watch him constantly. He's either sitting perfectly still hoping to God that a bird doesn't eat him, or he's running around like crazy. If I had one wish about talking to my chameleons, I wish I could just say to them, Hey, there's no birds in here. Chill out. You're cool. Yeah, you're cool anyway, all right. Well, it's cool

Carly 1:20:56
because a beard, a bearded dragon, has a third eye on the top of their head to see. I don't know if chameleons have the same thing. It's like a It's a scale, one of their scales, that is actually clear and that so that they can feel it or see a shadow, yep, above them, if there's a bird flying, I

Scott Benner 1:21:11
very sadly know that. So it's not really an eye, but it is a thing that they Yeah, yeah. All right, yeah, the third eye, yeah. Okay. I don't know what we're calling this episode, but you were terrific. Thank you for doing this with me. I really appreciate it. Hold on one second for me. Okay,

a huge thanks to cozy Earth for sponsoring this episode. Don't forget, Black Friday has come early at cozy earth.com right now you can stack my code Juicebox on top of their site wide sale. This is going to give you up to 40% off in savings. And these deals are definitely not going to last. I'm talking about sheets, towels, clothing, everything they have. Get that holiday shopping going right now, today. Do it. Do it. Do it. Cozy earth.com. Use the off code Juicebox. US Med, sponsored this episode of The Juicebox podcast. Check them out at us. Med.com/juicebox, or by calling 888-721-1514, get your free benefits. Check and get started today with us. Med, a huge thanks to my longest sponsor, Omnipod. Check out the Omnipod five now with my link, omnipod.com/juicebox you may be eligible for a free starter kit, a free Omnipod five starter kit at my link, go check it out. Omnipod.com/juicebox Terms and Conditions apply. Full terms and conditions can be found at omnipod.com/juicebox, 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? The episode you just heard was professionally edited by wrong way, recording, wrong way recording.com.

Please support the sponsors


The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

Donate
Read More