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Here we are back together again, friends, for another episode of the Juice Box Podcast.
B
I'm Robin. I was diabetic, type 1 diabetic for 18 years.
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If this is your first time listening to the Juice Box Podcast and you'd like to hear more, download Apple Podcasts or Spotify, really any audio app at all, look for the Juice Box 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 juiceboxpodcast.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 1. Go check them out right now on Facebook, Instagram and of course@touchedbytype1.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 1 diabetes. Touched by type1.org nothing you hear on the Juice Box 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 Juice Box Podcast is sponsored by Eversense365. 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. Eversensecgm.com Juicebox the episode you're about to listen to is sponsored by TandemMobi. The impressively small insulin pump. Tandem Moby features Tandem's newest algorithm, Control IQ technology. It's designed for greater discretion, more freedom and improved time and range. Learn more and get started today@tandomdiabetes.com Juicebox I'm Robin.
B
I was diabetic, type 1 diabetic for 18 years.
A
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?
B
I am 40 now. I was diagnosed at 22 and it is a wild story and I was really shocked at actually how common this happens to type 1 diabetics. But I was newly pregnant. It was first pregnancy. Didn't have any idea what was going to happen. Called an OB up, because that's what my mom told me to do was, oh, call the ob, get in with them. And 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 that 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 workup. 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 tell me to retest, I'm gonna want to know what is happening.
A
Yeah.
B
So they tell me my HIV test came back slightly positive, and I don't think I've ever had to scrape my jaw up harder off a floor.
A
You were 22.
B
22.
A
Pregnant?
B
Yeah.
A
Married? Not married.
B
I wasn't married.
A
Okay.
B
Been with my partner for quite some time at that time, but, yeah, 22. And I was just like, 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 P24 was one of them. And P24 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.
A
Yeah. Let me ask you real quick, Robin. You were like, you. But you said you had been with your partner for a long time, but did you think maybe I could have hiv? Or were you just like, was it just to freak out? Because, I mean, of the context of what was happening?
B
Well, there's a little bit of backstory with that. My biological dad was HIV positive and he died when I was 19.
A
Oh, oh, oh. So you had a ton of context for this, I see.
B
All 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.
A
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?
B
Not at all, 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.
A
Okay.
B
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.
A
Okay.
B
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 seroconversion, 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 obs. And it was. I mean, my next two kids were delivered by a general practitioner, but yeah, very, very rural community. You had to drive 30 minutes to even get to an OB.
A
But I thought you were gonna say to a road. That would have been funny.
B
No, but you know what? If you wanted to go to something that wasn't Walmart, you had to drive 30 minutes.
A
Yeah. For everything.
B
And it wasn't even like a. You know how now you can go to the big Walmarts that have, like, the groceries and stuff. We didn't have one of those.
A
No, you had, like, extension Cords and light bulbs. Walmart.
B
Yeah, it was exactly like that. It was super. Super farm community, super rural. We had some gas stations and McDonald's and Wendy's and the Walmart.
A
And faulty HIV testing, it sounds like, too.
B
Yeah.
A
Yeah, I guess. So how long does it take for you to figure out that you don't have hiv?
B
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 test 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.
A
I see.
B
And it came back. It was all negative. They were 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.
A
Is that a thing they tried to do every time you were pregnant?
B
HIV test is standard for all pregnancies, and it's a lull now that you have to take an HIV test during your pregnancy workup. But because my other children to 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.
A
Wow.
B
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.
A
So you kind of flipped out because not because you thought you had hiv, but you didn't want this whole thing to start over again. If the test should come back oddly.
B
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? Why would I.
A
No one 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.
B
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.
A
Rule setting for clarity, they found two issues with you. One they were wrong about, and the other one they didn't bother bringing up.
B
Exactly.
A
Awesome. How does that first pregnancy go?
B
I went back into more labs after they wanted to investigate the sugar problem. Now, 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 obese, 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.
A
I see.
B
So they had me come back in and they did all these labs and they said, oh, we're going to go ahead and give you glyburide. Glyburide is, you know, type 2 medication for diabetes. Because my sugar was super high. I don't even know what my A1Cs were, because I don't know if they were testing that, to be honest. But they gave me the glyburide 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.
A
Your blood sugar would get so high that you lost consciousness.
B
Yeah, sometimes. And then it would drop down really low because you take the glyburide and it's excreting. Whatever it could, you know, out of your pancreas. And I would end up passing out from that too. So I had like a. A finger monitor that you would prick your finger. I know at some point I would get up to like 4 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 hospital.
A
Okay. Did they figure it out there?
B
They wouldn't label me as a type one, but that Dr. Came in and said, I'm gonna tell you right now, you most likely have type 1 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.
A
How pregnant are you at that point?
B
Probably by four or five months pregnant.
A
Okay.
B
When they finally figured it out.
A
Okay, yeah, eventually you just get put on insulin.
B
Yeah, they just put me straight on insulin. I was on Lantus and Humalog 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 8:15. No, she was 8:12. That one was 8:12. So she was a big baby with a lot of Michelin man roles.
A
I like that you have so many kids. You said that one. How many children do you have?
B
Well, I have five that are biologically mine, but me and my partner combined have seven girls.
A
Oh, my. Seven girls.
B
Yeah, we don't have any boys.
A
Wow.
B
We don't need any boys.
A
I just like that you're like that one. Know there's that one, this one, the other one.
B
Yeah, 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.
A
My gosh, your house must be crazy. You know, baby comes out, it's bigger. Probably because of the 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 her.
B
23.
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23 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 Moby pump offer you unique opportunities to have better control. It's the only system with Autobolus 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@tandomdiabetes.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. Learn about Tandem's tiny pump that's big on control. Tandem diabetes.com juicebox the Tandem mobi system is available for people ages 2 and up who want an automated delivery system to help them sleep better, wake up in range, and address high blood sugars with Autobolus. This episode of the Juice Box podcast is Sponsored by the Eversense365 Get365 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 Eversense 365 it lives up to its name, lasting 365 days. That's one year without having to change your CGM. With the Eversense 365, you can count on comfort and consistency 365 days a year because the Eversense 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 Eversense365. Go to eversensecgm.com juicebox to learn more.
B
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 would go home. It was in the summertime, she was born in May. So I went back to work in June, July, freezing to death, literally wrapped in blankets all the time. Couldn't figure out what was going on. Ended 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. You 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 even now I maintain it at 1. 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 I went on. He was fresh out of med school, and he was like, yeah, your A1C is pretty high. I think it was 8 or something. He said, I must take 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 that 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 G80, 65 positive. You have type 1 diabetes.
A
But they told you that in the hospital?
B
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 gestational.
A
Okay, but they did give you insulin there?
B
Yeah, they gave me insulin. So it's like they treated without getting, like, a proper diagnosis.
A
I see. Okay. Got it.
B
Yeah. So he ended up running the labs and finding out that I was Gad65 positive, and then he treated my diabetes up until I was probably 30.
A
Okay.
B
But I. I know I was, like, 30 or 31 before I saw an endocrinologist.
A
How were your outcomes during that time? Do you know what your A1C was or what your goals were?
B
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, attaching these things to me. I was young. I didn't think it was attractive to have the pump stuck to you. CGMs 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.
A
Okay, so until you were 29, you. You were MDI?
B
Yeah, MDI all the way up.
A
How many kids did you have by the time you're 29?
B
Three.
A
Okay. And they're with the first baby's father? Yes.
B
Yeah. Yeah, we were. We got married, and we were together for, like, 10 years. We were married quite some time. Yeah.
A
Can you tell me the story of the dissolution of that marriage, please?
B
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 praying 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?
A
And.
B
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
A baby shower? Well, that's, that's not fun cheating, that's for sure.
B
Yeah, it wasn't great, but 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, she was 2, 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 open 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.
A
Oh, my gosh.
B
Yeah.
A
Okay. 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?
B
No, I. I don't think that. I think he was a good person. This is.
A
This is the bipolar.
B
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 had 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.
A
Oh my gosh.
B
And by the time we got like the filed 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.
A
Right.
B
You know, wow.
A
But you're saying he would assault you by raising your blood sugar and making you kind of more like kind of comatose?
B
Yes. They would turn it off and then let me get into a deep sleep and my blood sugar's high and it's hard to come out of a sleep when you're 3, 400.
A
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. I was like, geez, oh, I'm sorry. But you. 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.
B
And I think that's what a lot of people have trouble with when they try to say, oh, he's a bad person. He's not a bad person. This is not something he chose. And that's hard. It was so hard for me to even file the divorce. It was such an emotional thing for me 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.
A
You have experience with that as well, don't you?
B
Yeah. And that's something that I. 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 a small town, so they. They don't know any different. Right.
A
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.
B
No, I 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.
A
Okay.
B
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 6 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. This seems legit. Like he goes to work, he's been there for 10 years, thought nothing of it. He did 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 than being there where my ex husband knew where I was that was trying to murder me.
A
So you and drinking Claws get together and you take the kids over to his place.
B
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, but it was better.
A
It was like jumping out of the window of a building that was on fire.
B
Exactly.
A
Yeah.
B
Gotcha. And that's really how I frame that in my head now. But it was not the wisest decision. So I end 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 staying with this. And right off the bat, things were bad with him. Like, they were so bad because he drinks. 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 bricks. 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. He would tell me things like, I don't know why a company pays you because all you do is paperwork. 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 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, immediately. I know, I know this is a problem. Like, being with him is a problem.
A
So wait, did you want a divorce? Like, it. Was that the 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.
B
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 worthless.
A
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.
B
Yes.
A
All right.
B
Yeah. But he didn't understand that, so he just got upset and then was violent.
A
Yeah. Geez. Okay.
B
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 that's got two baby daddies and a pump?
A
Now, right before, it was, look, I got three kids at a pump now I got four kids, a pump, two baby daddies. Like, this list is starting to look unattractive. I gotta 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.
B
You 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. And 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.
A
Where did these guys. I have to. Every time I ask the same question. Was he super handsome?
B
No.
A
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 ad. Can you imagine, 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.
B
I can't believe that 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?
A
Groupies.
B
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.
A
This is all around alcohol, right?
B
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.
A
But at some point, you were one of those women. You just happened to marry him.
B
Yeah, but I didn't know. I didn't know what was going on.
A
My gosh. Okay.
B
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.
A
And.
B
And this is kind of like a full circle situation 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 and now has a baby with him.
A
Oh, my 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.
B
I actually don't even drink at all. This is the only time in my life that I drank was that one.
A
Year stint when you were like completely freaked out by the bipolar experience.
B
And 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. I.
A
Mean, you can have a glass. You can have a glass of wine. You can't be using cases of beer as seating. Like, do you know what I mean? Like, you can't be stacked up in the living room because there's nowhere else to. I can't. You guys. You gotta do better.
B
Well, I. I never drank beer. That's not my thing. I would drink wine. That's what I'm saying. I've never been a drinker. So obviously after having a kid with him, I was like, this is crazy.
A
Yeah, okay, I'm sorry. All right, so. All right. I don't know.
B
Where.
A
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?
B
So I was 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 20, 22. 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.
A
And what does that mean?
B
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.
A
Okay.
B
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 don'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 going to 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 going to fail.
A
Yeah.
B
And he said, yeah, I don't want to be with someone sick. You need to leave.
A
Oh, okay.
B
And I was like, okay, great. And I'm not even going to 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 go get typed. You can have one of my kidneys. And I'm like, no, I don't want your organs.
A
I just don't have anybody to tell anything to. I need help. Yeah, you're all by yourself?
B
Yeah.
A
Yeah.
B
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. And your kids were in 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.
A
Well, she better not get sick. Wow. I'm sorry. Word for word. I don't want to be with somebody sick. Get out.
B
Yeah, word for word. I don't want to be with somebody sick. You need to leave.
A
Jesus. I'm going to need to 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?
B
Yeah.
A
This is.
B
This is my life. And it's crazy. The whole thing is just crazy. And that's crazy. 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. Well, 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. Can you move?
A
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. Like, 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?
B
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%.
A
Maybe they just didn't like being near him.
B
Yeah, I was like, dang, was this a sign? Was my kidneys telling me to leave.
A
So your kidney function testing eventually cleared up?
B
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 up.
A
Okay, so how do we get to the part where you don't have diabetes anymore? Like, what's the path to that?
B
Yeah, actually, I met somebody. I've known him a while, but he was like, hey, come get coffee. And I was like, no.
A
Yeah. You're like, listen, I'm a lesbian for sure. Just get away from me. Yeah, yeah, get. You guys need to get out of here.
B
Converting maybe. I'm going to become a nun.
A
Right, yeah, whatever.
B
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 going to. I'm going to show up at 6 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, dillon, wow.
A
Geez. He must really like kids. Go ahead.
B
Exactly right? I was like, I don't know. And he knew I had two ex husbands. He knew what was going on with that. We go and 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, is that he knew me married, and he'd asked me to just get coffee as friends multiple times throughout that. And I was like, no. But 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 12:30 at night. Like if an alligator came into our house and he's like, we don't live where alligators are.
A
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?
B
Oh, I'm just like, how are you gonna take care of that? Because you can't really kill it and stuff. Like, I just asked him 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 of him. 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.
A
You found a guy you liked. You didn't feel like you were it stuck because you're in the bad rental, and people could make the. 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.
B
Yeah.
A
Okay. Are you still with that guy now?
B
Yeah. We're actually gonna get married.
A
Oh, good for you. Okay, so. So you. So you guys get together and then what. What happens with your diabetes?
B
Like, that's where I was going with this.
A
Yeah.
B
We move in to this house together. Like, I literally bought this house and moved in in November. And I went to the Endo, and I'm, like, telling the Endo 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 this is.
A
You're asking the wrong person. You don't want to hear this, but go ahead.
B
All right, now he's, like, always super interested in the whole process. And he's like. He tells me, I know a guy, and then 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?
A
Like, do you feel like someone who was selling you something in an alley at that point? I know. Yeah. Yeah.
B
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 were 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 this 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, like, here's his 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 at 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 a 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 like.
A
And this person was doing research. What's this doctor's name?
B
Dr. Wachowski. He's at a University of Chicago. Yeah, I just looked him up and emailed him directly.
A
Okay.
B
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?
A
And what was his research?
B
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. That's something big. He also does tpait, 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.
A
What's his first in general.
B
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 hurt 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 a 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 of Rupert Taga. Rupert 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 Cernova 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.
A
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, 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?
B
Yeah. Well, with my first husband, no, I didn't have diabetes when I met him.
A
Right.
B
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 mom, 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?
A
Right.
B
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 to. 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.
A
Yeah. Okay. I just wanted to understand where you're coming from. So, by the way, I'm just going to tell people because Robin's story is so crazy. I looked up Dr. Wachowski. He's a real person.
B
Yeah, he is. And you know what? I bet he would go on your podcast, too. No joke.
A
That'd be awesome.
B
But.
A
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?
B
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 they're 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 Cernova, where they were testing out pouches in your stomach. They put the pouches in. They're like mesh pouches that kind of resemble hernia repair pouches.
A
Okay.
B
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 inter portal ones that they do in other countries. We don't do it here, but I see another country. So that's what they were testing to see if. 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 2 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 patches 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 a 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, I forgot I had to do thymo induction. To 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 you do it. I ended up with serum sickness after that and had to go back to the hospital for a week. So.
A
And this is all just to get ready for these to put in the cells.
B
Yeah. 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. Okay.
A
Okay. So you get this procedure and you wake up and you don't have diabetes anymore.
B
No, that, 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 3 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 I 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 male 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 transplanted a second time, but in between the first and the second transplant in the pouches, I had gotten pneumonia. 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 happiest could be. Had no idea that I had sepsis, but it had went in because I had a fever and they were like, yeah, you're septic. So we, 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 9, 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.
A
When was this?
B
That was October of 2024. October 9, 2024.
A
Wow. So you're on anti rejection meds?
B
On anti rejection meds, yes.
A
Okay, and is that like a lot of pills that you take every day or how does that work?
B
No, actually I do an IV every four weeks of Belasept 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 Bella Sept iv and then I take tacrolimus, low dose. Like a lot of people that have transplant, they take my fortic, they're taking tacrolimus, they take steroids. Like you have a bunch of pills. But because I'm on Bella set, I only take tacrolimus and a low dose, but that's it.
A
Okay, and so how long has it been since.
B
It's almost a year. So the ninth will be a year.
A
You haven't taken any insulin?
B
No insulin? No. My A1C is 5.1 right now.
A
Wow, that's insane. Can you describe some ways that it's changed your life?
B
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 beat, 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 in type one, 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 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.
A
You traveled with it because you thought, what if something happens and I suddenly need it?
B
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 it loaded.
A
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?
B
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.
A
Yeah. That's awesome.
B
And it's embarrassing listening to your pump beep. You're in a meeting. You know when your pump's going off and you know they're like, what. 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 those in hr and somebody told me, cool pager. I'm like, actually, it's an insulin pump. You work in hr.
A
Pager. Thanks. Yeah, it's great. Okay, so what are the. I mean, it obviously sounds magical, but what are the downsides?
B
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 legitimately 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 of days? And they were like, sure.
A
So are you more susceptible to cough, cold, flu stuff, or what are your worries around that about having a lower immune system?
B
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 don't look good. I'm like, yeah, I know. Like, my oxygen's 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 workup, checked my heart, checked everything, looked at the 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 lung. 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.
A
Okay, so there's no restrictions that the transplant surgeon gives you about being out in public or.
B
No, 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.
A
Okay.
B
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. Stay right there. I'll stop them.
A
Do you 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?
B
No, no, never.
A
Because the win is worth it.
B
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.
A
I remember potatoes. Wow. And your kids have seen a big change too.
B
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 you 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.
A
I don't know.
B
Oh, we used to do that in our area.
A
Okay.
B
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 the, 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 at like 140.
A
Yeah. Just like everybody else's, huh? How about that?
B
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.
A
It wouldn't have been worth the risk for you. Do you ever check your other kids? Like, is there other autoimmune through your children?
B
I do check them, actually. So I'm a very big advocate for the Trial net. Are you familiar with trial net?
A
Yeah, of course.
B
Yeah. So I'm very big advocate for that. I test my kids. I just did one on a TikTok 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. We're cycling back, retesting now, and then we sent 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 celiacs, 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 ate low FODMAP in the house and everyone was really mad about that.
A
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.
B
Wild ride. Yeah, I'm good now. We're getting married in October. Steve and I are.
A
Good for you. Congratulations.
B
He's a very, very good person. He. 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.
A
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?
B
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. We were just very close. Like, we talk about anything and everything. I tell him the craziest stuff and he's like, okay, 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.
A
Did he have kids?
B
Yeah, he has two girls.
A
Okay, so now you have. So do they live with you guys?
B
They live. They're 50. 50. His ex wife lives like maybe two miles from us. Okay, so they will go there.
A
There are Seven kids in your house at some points during the week?
B
Every other 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 that first ex husband I have, 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.
A
You think his illness got in the way of him being a father at some point?
B
No, I think it's the new wife, to be honest.
A
I got you.
B
She was offering me healing crystals to heal my diabetes. Like this is. Yeah, that was. That's a whole crazy thing too.
A
Did you try them?
B
I did not try the healing crystals. No.
A
It might have worked.
B
Yeah.
A
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 story.
B
Yeah, I do. I feel tired.
A
Yeah.
B
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. I would say he reaches out to his kids like maybe every two or three months. It's usually when him. Her split up or when they are together. It's very chat. GPT message type thing like, you know, happy holidays stuff. Whatever.
A
It sounds like an AI wrote the message that he sends. I got you.
B
It's 100% AI wrote. Yeah, yeah. So we don't even deal with him at all. That's not even chaotic. We. 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, 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 allowed 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?
A
Oh, my God.
B
I was like, what?
A
I'm not used to people being this nice to me, but thank you. That'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 very much.
B
It's like, this is the greatest thing that could have happened in my. They want to throw me a point, a party, when I was officially taken off my pump because they were like, you're 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 and act crazy and be like, I think I'm gonna die. And he's like, probably not, but let's go.
A
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?
B
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 with out having to do anything. And she just recently went in and got another eyelid 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.
A
Yeah. And I guess the cells even can get. I don't Know what the word is like, do they?
B
Yeah, they do say that they could get tired, they could burn out. They say that too.
A
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.
B
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 I still wear 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 fell? 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 ate something too high carb. My first thought is always, are these cells burning out?
A
Yeah. Yeah.
B
You know, so you have to live with that. Sure. It's not an end all, be all, but what I will say about it is I would do it a thousand times over again because it does lower your risk for death for sure. Out of the diabetes.
A
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.
B
Yeah.
A
That's a thing you've lived with for a long time.
B
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.
A
Yeah.
B
I would do it a thousand times over again. There's a lot of trade offs with it. It's not this miracle cure by any means, but they're come, they're Getting there.
A
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 4 o' clock in the morning when nobody's looking.
B
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 fails? 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 that I guess long term is protecting you from these other issues that you end up having as a diabetic, these risks that you run into, you know?
A
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 Wachowski.
B
Yeah. Dr. Wachowski.
A
Yeah. @ University of Chicago Medicine. Is that right?
B
Yep. University of Chicago Medicine.
A
Wow. That's awesome.
B
He's fantastic. He's fantastic with his patients and stuff. Their level of care is amazing. I've never had level care like that.
A
Well, at least you listen. It's exciting. Your GP knew a guy and look where it led. He knew a guy.
B
I know a guy that didn't really know a guy.
A
Yeah, I mean, I've heard of him. I saw it on the 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 know?
B
Yeah, absolutely. Because they get applicants every day, Right?
A
I would imagine. Yeah.
B
So, I mean, it. 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.
A
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?
B
For sure. Yeah.
A
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 put Dr. Wachowski's name 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.
B
Yeah, I'd be happy to connect you guys. He was just on the news not too long ago.
A
Would you? That'd be great. Yeah, do it. Yeah, that'd be awesome. Okay.
B
All right, I'll send you guys an email.
A
Awesome. Hold on one second for me. Okay.
B
All right, thanks.
A
Thank you. The conversation you just heard was sponsored by Touched by Type 1. Check them out please@touchedbytype1.org on Instagram and Facebook. You're gonna love them. I love them. They're helping so many people at touched by type11.org the podcast episode that you just enjoyed was sponsored by Eversense CGM. They make the ever sense. 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. Eversense cgm.com juicebox head now to T tandomdiabetes.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. Thank you so much for listening. I'll be back very soon with another episode of the Juice Box 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? 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@juiceboxpodcast.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@juicebox podcast.com the episode you just heard was professionally edited by wrong way recording wrongwayrecording.com.
Episode Title: After Dark: Islet Cells and Second Chances
Host: Scott Benner
Guest: Robin
Date: November 13, 2025
This episode features Robin’s extraordinary, multidimensional journey through type 1 diabetes, misdiagnoses, tumultuous relationships, motherhood, and ultimately, a pioneering islet cell transplant procedure. Robin’s story is one of remarkable resilience, touching on trauma, survival, personal reinvention, and the hopeful frontier of diabetes research. Both host and guest maintain a conversational, candid, and sometimes darkly humorous tone throughout, making the story as engaging as it is powerful.
“I don't think I've ever had to scrape my jaw up harder off a floor.” – Robin [03:45]
“[The doctor said]…we can't really tell you that you have diabetes because you are pregnant again.” – Robin [10:14]
“With seven, you got a broke bestie every day of the week. If you need to go to Starbucks every day, nobody’s gonna tell you no.” – Robin [13:41]
“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.” – Robin [24:39]
“Yeah, I don’t want to be with someone sick. You need to leave.” – Robin [37:51]
“This is my best friend. We stay up late at night talking.” – Robin [42:30]
“I woke up not diabetic. That was wild.” – Robin [55:54]
“Sleeping through the night, not worrying my kids were going to find me dead in the morning – that’s what changed my life.” – Robin [57:01]
The Realities of the ‘Cure’:
“It’s not an end-all, be-all, but I would do it a thousand times over.” – Robin [72:07]
Daily Impact:
“Do I want to spend my day fighting these highs and lows? … That kind of stuff has been…life altering.” – Robin [58:29]
Gratitude and Moving Forward:
“I feel like it’s more of a fate situation. … Maybe this is the blessing I get from dealing with those two ex-husbands.” – Robin [74:18]
On the trauma of being misdiagnosed:
“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.” – Robin [08:04]
On dangerous management and feeling medically invisible:
“My sugar was super high. ... I was passing out.” – Robin [11:04]
“They kept telling me…maybe it is type two, I don't know.” – Robin [16:27]
On diabetes and shame:
“I just couldn’t fathom attaching these things to me... I thought the pump was really scary.” – Robin [19:49]
Re: abusive ex manipulating her diabetes:
“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.” – Robin [24:39]
On being asked to leave due to illness:
“Yeah, I don’t want to be with someone sick. You need to leave.” – Robin [37:51]
On awakening non-diabetic after islet cell transplantation:
“I woke up not diabetic. That was wild.” – Robin [55:54]
Robin’s perspective on post-diabetes life:
“Everyone always asks you, what are you going to eat? … What I cared about was…not worrying that my kids were going to find me dead in the morning.” – Robin [57:01]
On the anxiety that remains:
“I spent 18 years diabetic and there’s a lot of anxiety that surrounds that…What if it comes back?” – Robin [71:16]
On finally feeling like she got her “win”:
“I do feel like the universe owed you a win. That’s for sure.” – Scott [74:33]
Robin’s journey is equal parts harrowing and hopeful—a testament both to the failures and redemptions of medicine, the deep and tangled effects of chronic illness on personal relationships, and the disruptive promise of emerging diabetes technology. Her story resonates as a message of survival, informed self-advocacy, and the potential literal "second chances" modern science may offer people with type 1 diabetes. The episode’s open, raw, sometimes humorous dialogue makes her lessons especially accessible for those struggling not just with diabetes, but with being “seen” as a whole person.
For listeners:
If you want to learn more about islet cell transplantation or Robin’s doctors, check out Dr. Piotr Witkowski at University of Chicago Medicine.
Host’s signoff:
“I do feel like the universe owed you a win. That's for sure.” – Scott [74:33]
[End of summary]