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Scott Benner 0:00
Hello friends, and welcome to episode 995 of the Juicebox Podcast.

Today, you're gonna hear from Mary, she's 34 years old, a type one and a registered nurse. She's also had two kidney transplants and a pancreas transplant. You're not going to want to miss this. While you're listening. Please remember, I'm sorry, it's late. I'll do it again. While you're listening. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you're thinking about supporting the sponsors, thank you. Please use the links in the show notes of your podcast player with the ones available at juicebox podcast.com. If you can't remember the links, you know when you hear him in the ads, you can support me by buying your AMI pods. Dex comms getting your supplies from us med getting a contour next gen meter G voc hypo Penn drinking ag one buying your sheets and clothes from cozy earth.com Checking out touched by type one.org and looking into therapy from BetterHelp. If you're looking for support, check out our private Facebook group. It's absolutely free Juicebox Podcast type one diabetes on Facebook. It has 41,000 active members. This episode of The Juicebox Podcast is sponsored by Dexcom Dexcom, of course makes the Dexcom G six and Dexcom G seven continuous glucose monitoring systems. You can learn more, get your benefits checked. We're get started at my link. today's podcast is also sponsored by Omni pod. Now Omni pod makes the Omni pod five and Omni pod dash. These are both terrific tubeless pumps, you're gonna go check them out and decide which one's for you. Omni pod.com forward slash juice box. Use my link. Get yourself all set up. I mean, the nuts the what did they say? What's that saying? Soup to nuts. Everything you need soup to nuts is what does that mean? Soup to nuts? Oh, I'll look it up and tell you in the ad later. Anyway, Omni pod.com forward slash juice box check out the Omni pod five. And they Omni pod dash soup to nuts. What could that mean? It's gotta be something about how we'll figure it out.

Mary 2:41
Hi, I'm Mary. I live in Oklahoma City. I'm a registered nurse and I've been diabetic since I was nine became a registered nurse when I was 24. What else do I need to say?

Scott Benner 2:53
How old are you now?

Mary 2:54
34.

Scott Benner 2:56
Oh my goodness. Yeah. It's almost.

Mary 3:01
Yeah, like I've way past the halfway mark.

Scott Benner 3:05
Kind of nursing. What kind of nursing do you do?

Mary 3:08
I've been all over the place right now. I'm actually into like corporate nursing. Like I got into the administrative side, like more dealing with executive and explaining to them like, this is what the nurses need kind of being like liaison to like, helping them prove what the nurses needs are in the hospital, which has been really neat. I've only been doing that for like two years, but it's been really been really rewarding so far. Are you

Scott Benner 3:34
the lady on the TV show in the pantsuit holding the folder to her chest off in the corner?

Mary 3:39
I wish

Scott Benner 3:42
everyone knew that scene in every hospital Trump,

Mary 3:44
I think I think they do. Yeah, mine's really less clamoring than that. It's a lot of numbers, a lot of checking stuff, you know, seeing what the nurses are up to. And then like, translating that into like, this is this is why this is going on in the hospital.

Scott Benner 4:02
Oh, that's interesting. How did you make the transition to that?

Mary 4:05
Man, it's all part of my story. But I just since I've had like three transplants like being on the floor, and like with such a low immune system, just like didn't really feel right. But like I love nursing, so it's like, okay, like nursing is like a very, very big world. Like if you get tired of one area, like there's tons of areas to go into. And I was like, Okay, how can I like still keep my immune system up, but also like, not put myself at risk. And I got a job as a corporate nurse at this company that owns about 34 facilities around the Oklahoma area and they have like a corporate office in the city that you can do remote work but also like work in the office and I was like this perfect be great for me. And I worked in geriatrics for a while so I was a director of nursing and so like the administer Trade of side was there. And it just all fell into place. Honestly,

Scott Benner 5:03
that's amazing. Well, now you have done what they call in the business tickled their ass with a feather. Mary, you've given a little taste of the story down the road. And then it's my job to bring you back to the beginning. Because people right now are like, did she say transplants? And like she did. But I'm not telling you about that. You have to listen to the thing now. See how it works? Yeah, you're very good at this. You've never heard tickle your ass with a feather? No, I

Mary 5:30
have. Oh, yeah.

Scott Benner 5:31
That's what you've done. Good job. You've done this before. I love it.

Mary 5:36
This is the first time. So here we go.

Scott Benner 5:39
All right. So you're diagnosed when you're nine? Are there any other type bonds or autoimmune in your family that would have made anybody think one of these kids is definitely getting diabetes?

Mary 5:50
Yes, I have a cousin, older cousin, who is type one. And my dad actually passed away when I was three have like an auto immune deficiency. Of course, this was like in the 80s to like, they didn't really know what it was like, he kept getting sick. They did exploratory surgery on him, which like, isn't a thing anymore. And they saw his spleen was enlarged. They took it out and they're like, Oh, you're good. So we think there's some sort of autoimmune issue that he had. But we just don't know what it was. And then my cousin. And so my mom was very aware, like she is educated. She was a biology teacher. And so she kind of watched me pretty close. And when I was in school, I just like, was thirsty all the time and going to the bathroom. I even like my teacher even sat me in the back of the room. And she was like, Okay, I'm just gonna have you hold up a one if you need a drink and hold up to if you have to go to the bathroom, and I'll just not at you because it was like, so constant. I was like interrupting class all the time. So my mom took me to the doctor's office, of course, it was on a Friday. And they check. They check my blood sugar. And they call her back that afternoon. And they're like, Yeah, her blood sugar was like 701. Like, we want to have her come back on Monday for a recheck and my mom's like, oh, now I'm just gonna like take her to the hospital. So she packs me up and like the close it like, we grew up in Bentonville, Arkansas, and there was like, there wasn't even an endocrinologist in our area. So like, the closest place for us to go was Tulsa. So she like picked me up from school drove me to Tulsa, like the children's hospital there. And it was like, I think she's diabetic.

Scott Benner 7:34
Yeah, what did they do spill sugar in the blood sample? Like how

Mary 7:37
would it Yeah, like, how, how would it be? 701? That would be a mistake. Again, why are we waiting three days?

Scott Benner 7:44
You guys just come back? Listen, either on Monday, or if she slips into a coma? Can it Okay, either?

Mary 7:52
Either or don't? Yeah. So I was pretty lucky to not get sick. My mom, I give her credit for all of that. She noticed the signs. She knew what to do, and got me into the hospital. And I just, I didn't really understand what was going on. Because I wasn't sick. Like, I'm, I'm being admitted to the hospital. Like, what if we're paying a lot? Yeah, like because I can't gain weight. Like, I don't understand. But we also like had a neighbor at the time that was diabetic and who was very uncontrolled. And I just remember like, he was always begging us to, like, sneak him food. And I was like, I'm never gonna have a brownie again. Like,

Scott Benner 8:30
oh, you knew you knew a kid who was like, yes. on the black market looking for cupcakes.

Mary 8:36
Yes, absolutely. Yeah. And so I remember that. Like, that's the only thing I could say is like, I'm never gonna have a brownie again, like this. Is it?

Scott Benner 8:46
Your mom? Shut up.

Mary 8:49
Like, can we just stop and get a brownie? Brownie

Scott Benner 8:52
for your mother and rehab for your mother? This is only this is only a handful of years after losing her husband to

Mary 9:00
Yeah, absolutely. Yeah. She she was a trooper. Yeah, she was a single mom of two for four years. And then she got remarried to like my now Dad, like, I consider my dad because he adopted me and he is my dad. And then like, I don't even think they've been married a year. And then I'm diagnosed. Yeah, like, damn.

Scott Benner 9:20
I'd love to talk to him. I bet you there was a split second where it was like, what I do.

Mary 9:24
Yeah. He's like, he's not like, medical at all. Like, he's the smartest person I know. But like, you talk medical stuff. And he's like, what? You know,

Scott Benner 9:33
I just listen. It's been years and I'm sure he's delightful. But I bet you there was a split second where he was like, God damn, damn, damn, damn Damn. What I do when I do what I do.

Mary 9:44
What are we doing? Married the

Scott Benner 9:47
lady and her kid. Oh, oh, kids die. Great, great. Good. That's fine. It's fine. It's fine. Like you know, then you get over it. You relax a little bit. And then you go on. Yeah. So you get this diagnosis. And it's some long time ago, right? What year?

Mary 10:07
Yeah. Okay, so if I was nine, let's do some math. 9987 Yeah.

Scott Benner 10:13

97. Okay, how does the management begin?

Mary 10:18
Yeah. So they're, like I said, there was no endocrinologist in our area. So we, they're like, insulin pumps, like wasn't even a thing. Like I, I'm sure, like, I date myself pretty well by saying that. So we started with just, I had to, like, eat six times a day like, was the NPH. And that was like a really hard adjustment. Like, we didn't even have, like the capability, like the capabilities that we do now are just, like, not even a thing then. So like, I had to eat at like 630-930-1233 3639 30, like, every day. Yeah. And you gave yourself the same amount of insulin. So like, if, like going to a birthday party and having pizza and cake like, wasn't a thing. Like, at all, I did have some great teachers in school because at 930 Instead of like me, like whipping out my own snack, like, they made it to where our class got to have a snack. So like, I was like, the cool kid in school. Like, yeah, we get to have goldfish.

Scott Benner 11:20
You know, Mary is the bringer of goldfish.

Mary 11:23
Ya know? So, so that was nice, but like, I'm telling you Saturday mornings, or, you know, going to birthday parties. It was it was difficult, like you were the person that like change the schedule, or you were just over there sitting like not eating what everyone else was eating. And like, Thank goodness for short acting insulin coming along. Because that like that was a game changer for all of us. Yeah. We were like, what?

Scott Benner 11:52
Mary? Hey, I think that microphones touching something. Oh, yes, my hair. I expressly at the beginning told you to be careful about that. And now look where we are nine minutes. Now. You're just talking and having a good time. And you forgot all about

Mary 12:05
your hair. Yeah, I was just tossing my hair back and forth.

Scott Benner 12:08
I guess I could feel you you were just like you're catching a stride. I was like, she's really into this story. I don't want to mention this. But I keep hearing. But it's gonna get really bad. Yeah. And I'm and it makes me mental. I don't even know another way to put it. Like I hear it. I'm like, please stop that microphone. I can hear myself in my head. Anyway. Okay, so. All right. So you are on the mother of all schedules, like they are shooting insulin into you and you are eating the same things over and over again. Yes. Jesus was terrible. Does that stick with you as an adult?

Mary 12:42
Yeah, it was terrible. Like, the variety was just not there was there was no such thing as variety, like you do like, you know, goldfish, or peanut butter crackers at 930 and 330. In your breakfast, lunch and dinner were were pretty the same, like, anywhere from 30 to 45 carbs, was it? Like you had to make it work?

Scott Benner 13:02
So how long did that go on for?

Mary 13:05
And I know I was in high school. Whenever I got an insulin pump, so at least five or six years, it was a long time.

Scott Benner 13:15
Did you stick to it?

Mary 13:17
Yes. My parents were very supportive. Of course, like, it was one of those situations where we didn't enter like, when I was diagnosed, I was in the honeymoon phase. And I was like, Oh, we got this, you know, like, a plus b equals c, right? Like, that's how it works. And then like, I get into, like, my teenage years, and the hormones just like totally threw everything off. And we were like, what do we do? Like, we're doing? Like, we haven't changed anything. Her diet hasn't changed. Like I don't even have like a sweet tooth at all. And so like when my blood sugar's would be like over 200 I'd be like, What did I do wrong? Like, I ate exactly what I was supposed to eat. Like, I was a perfectionist. Like, if I took a test and got a 99 instead of being like, that was great. I'm like, what, what was the 1%? I missed? Like, tell me what I miss. Yeah. So going through that was like, going through puberty was really difficult for me. You know, we didn't have Dex comps. We couldn't see what my blood sugar's were doing. So we would go I remember like we would, I would dread driving to Tulsa, go to the doctor's office, because I'm like, they're just going to be mad at me. Like, I didn't, I didn't do well. And we would go there and my parents are always super supportive. Like you're trying your best. That's all you can do. You know, when I would leave just feeling like I failed. Like it was a test that I failed.

Scott Benner 14:39
Yeah, well, because when your parents say you're trying your best, that's all you can do. Even as a child you know it. That's not okay. Like that. Okay, yeah, it's okay, buddy. No, it's not like you're supposed to say that. Yeah. My son once said to me, he goes, You're my dad. What else you're gonna say? And I was like, Oh, he's right. Yeah. That's totally

Mary 15:00
right. Yeah. But this doctor is telling me that I'm messing up. And it was difficult

Scott Benner 15:07
really, in those words are just that's how it felt.

Mary 15:10
No in those words. No, I did have a great endocrinologist that was like, super supportive and nice. And then he like, got a promotion and went moved to Texas, and we were devastated. And the one after that was just like, just, there's not even a word for him just very harsh. Like, I have a son and his hemoglobin or his agency is like, 4.5. And I'm like, that's not even healthy. But, okay, like, I'll try harder. Like, you know, what do we do? And there wasn't really much adjustment you could do.

Scott Benner 15:42
I was gonna say, was there any, like, suggestions after that? Or just admonishment? Yeah,

Mary 15:47
right. Like, we didn't leave, like making any changes. And so it's like, okay, like, do better. But we have no suggestion for you.

Scott Benner 15:57
That's, that's great. Oh, do you listen to the podcast?

Mary 16:00
I do. Yeah.

Scott Benner 16:01
Does it surprise you when I use a word like admonishment? But then you realize I'm an idiot at the same time, because it just took me by surprise. I said it. I was like, why is Mary's episode me being really thoughtful? And somebody else's episode? I'm just like, a, like a, like a goofy moron. I can't figure I can't even figure myself out. I'm trying to say it's got to do something with people speaking style and their voices. Yeah,

Mary 16:27
I was gonna say it's me. I have like a very sweet voice. You're drawing me into being thoughtful somehow. Yeah, you're welcome. Thank you like you meet

Scott Benner 16:35
that Sunday. Oh, no, I definitely don't give too many people come on in a row where I'm just like, you know, being zany for some reason, even when I'm editing. I'm like, I gotta spread these out a little bit. Nobody, nobody wants to kiss you. Because I can get into like a Jag. You know what I mean? Sort of like you with your, with your goldfish. I can sort of do the same thing over and over again. And so when I sit down later to edit, I'll be like, Wow, for that. 10 days, I was really like, somber or I was really goofy. And then I just, I, I take those episodes, and I kind of pepper them around each other a little bit so that you don't like turn the podcast on three times in a row. And it's like, you know, me with a seltzer bottle and a big red nose. But anyway, yeah,

Mary 17:18
that's, that's the week someone subscribed. And they're like, You know what,

Scott Benner 17:21
guys? I'm not doing this. Yeah, yeah. So I am just now. I wish you could, like I said, admonishment. And a voice inside of my head went, Ooh, good word.

Mary 17:32
We'll use that one again. Save that one.

Scott Benner 17:36
Writing it now. I'm just ruining it by bringing it up. But alright, so Well, that's a lot, isn't it? So now you've got the doctor leaves on you. And you have no instruction, do things begin to spin out of control?

Mary 17:52
You for a few years? Yes. Like I remember going in, and then just my agency thing eight and nine. And they're like, You know what, like, you are just people are just ruining yourself. Like, and it was, it was a really hard time, like, as a teenager, especially like, when I wanted to do well, you know, it would be one thing if like, I didn't care. And then I went in it was like, Well, yeah, like, that makes sense. But like, for someone who tried really hard, like, I was checking my blood sugar, like eight 910 times a day, like in between meals, like trying to figure out like, what is happening? Where is this? Like? where's this going wrong? Is it the middle of the night? Like, why is my insulin not working? You know, I got to the point where I was like, well, maybe insulin doesn't even work for me. Maybe I have something else. And then we finally got an endocrinologist, like in my area, who was phenomenal. And he's like, Hey, like, they have these insulin pumps. I think you're a perfect candidate for it. Like, since your blood sugars are all over the place. And we were like, yeah, like, let's do it. And of course, like the pump was, was life changing. For me, as I think a junior in high schools, when I got it junior or senior in high school, I got like the Medtronic, like the first Medtronic insulin pump. And I was like, wow, this is incredible. Like, where has this been my whole life? Like, imagine how different my childhood would have been. This this existed? How would you

Scott Benner 19:20
like to know what your blood sugar is, without poking a hole in your finger, you can with the Dexcom G six continuous glucose monitoring system, which is available@dexcom.com forward slash juicebox. Not only does Dexcom offer zero finger sticks, but you can get your glucose readings right on your smart device that's your iPhone or your Android don't have a phone. That's okay. You can use Dex comms receiver. On any of these devices. You're able to set up customizable alerts and alarms, setting your optimal range so that you'll get notified when your glucose levels go too high or too low. And you can share this data with up to 10 followers. Imagine what that could look like your child could be at school, and their data could be available to you, your spouse, their aunt, the school nurse, anyone who you choose, my daughter has been wearing a Dexcom for ever. And it helps us in multiple ways. Around meals, we're able to see if our boluses are well timed, and well measured. If they aren't, we can tell by how her blood sugar reacts, and then go back the next time and make an adjustment. Without the Dexcom CGM. We're sort of flying blind, but not just at meals. Also during activity and sleep. The Dexcom offers us an unprecedented level of comfort and security, being able to see my daughter's blood sugars in real time. And not just the number. But the speed and direction is an absolute game changer. If you're using insulin dexcom.com forward slash juice box head over there today to see if you're eligible for a free 10 day trial of the Dexcom G six. The Dexcom is at the center of how we've been able to keep our daughters a one C between five two and six two. for over seven years, we've been able to minimize variability and keep her blood sugar's in a stable range because of the information that we can see with the Dexcom these are our results and yours may vary. But using Dex coms feedback has helped my daughter without any food restrictions, live a more normal and healthy life dexcom.com forward slash juice box my daughter Arden began wearing the Omni pod tubeless insulin pump on February 4 2009. That was 5093 days ago. Or another way to think of it 1697 pods ago. At that time, she was four years old. Hang out with me for a moment while I tell you more about the Omni pod Omni pod.com forward slash juice box. Today Arden is 18 and still wearing Omni pod back then there was one choice just one pod but today you have a decision to make. Do you want the Omni pod five, the first and only tubeless automated insulin delivery system to integrate with the Dexcom G six, because if you do, it's available right now for people with type one diabetes ages two years and older. The Omni pod five is an algorithm based pump that features smart adjust technology. That means that the Omni pod five is adjusting insulin delivery based on your customized target glucose that's helping you to protect against high and low blood sugars, both day and night. Automatically. Both the Omni pod five and the Omni pod dash are waterproof, you can wear them while you're playing sports, swimming in the shower, the bathtub, anywhere really. That kind of freedom. Coupled with tubeless a tubeless pump, you understand it's not connected to anything. The controller is not connected to the pod, the pod is not connected to anything, you're wearing it on the body tube lessly no tubing to get caught on doorknobs or anywhere else that tubing with those other insulin pumps can get caught Omni pod.com forward slash juice box that's where you go to find out more, you may be eligible for a free 30 day trial of the Omni pod dash, you should check that out too, when you get to my link, Omni pod.com forward slash juicebox. So if you're looking for an insulin pump that is tubeless waterproof, and automated. You're looking for the Omni pod five. If you want to do it on your own, you're not looking for the automation, Omni pod dash for full safety risk information and free trial Terms and Conditions. Please also visit Omni pod.com forward slash juice box

I think this all the time. Like just we're in such an interesting place to go if I started this podcast 20 years from now. The stories like yours would almost be gone. Right? But salutely Yeah, but because of where it is now. There's just so many conversations with people who all I can think I'm Why am I why am I going from serious to emotional What is wrong with me, Mary?

Mary 24:29
I'm ready for it. Bring it on.

Scott Benner 24:31
I'm gonna cry. I don't even know you. Like, if you were just born in a different time, this wouldn't have happened to you.

Mary 24:39
Right? No, that's, I think about that all the time. But then I'm like, No, I wouldn't have my story that I have now. You know, like, it's part of my story. Like it makes me a more empathetic nurse. Like, I mean of course I would like to have not gone through three major surgeries and all that but like, yeah, the I do have those thoughts but you just can't I have to like, push them aside and be like, you know, but it wasn't it didn't exist. So here we are, and like, what can we do now?

Scott Benner 25:05
Yeah, I know. And in my regular life, I don't think like that. It's just that when you sit here and you're staring at a blank wall, and so and you are right, by the way, that you have a sweet voice, like it's I, by the way, that was weird of you to bring up on your own. You could have let me say it, but when you have a sweet voice, and it makes me you know what I think the problem is, you're talking and I'm picturing somebody I know listens to the podcast. Oh, yeah. And I can see her in my, in my mind, and she doesn't have your situation. But like, I can see her and like, you know, at a concert in apparent like cowboy boots and cut off shorts and like, you know what I mean? Like, I'm like, Is this who Mary is? I have no idea. This is who you are, by the way, but I'm attaching your story in your voice to a different person that says, yeah, it's making me upset because I I know that person better. So yeah, anyway. Do you own a pair of cowboy boots that you wear two occasions?

Mary 26:04
You know what? I wish I could say yes, but I don't.

Scott Benner 26:07
It's okay. I don't, I'm not judging you.

Mary 26:11
I know. But for people who are like, Oh, you live in Oklahoma, like as all you do is wear cowboy boots and hats. It's like no, actually, there's more to Oklahoma than that.

Scott Benner 26:19
I'll tell you I'm really I'm upset because I think the Pepperidge Farm company probably took a big hit when you went to that insulin pump out why No, they were probably like, they were probably sitting in a room going like, I don't understand what happened. But our numbers are way down. Right? Yeah, I did a little investigating found out a girl named Mary got an insulin pump. She's not buying goldfish anymore.

Mary 26:39
But that and juice boxes. So

Scott Benner 26:43
Boy, that's interesting, isn't it? The insulin pump company is really digging into the juice box market.

Mary 26:49
That's true. And now you can't even find juice boxes. That's a whole other subject.

Speaker 1 26:53
It's a COVID thing. Right? Right. Yeah, something. Also, I just want to call everyone out who like makes food. We see you making the packages bigger and putting less food in it and charging more. We're not stupid. Stop it. Yeah. Yeah, I see it. Yeah, absolutely. ripping us off. And under the guides. It's good. COVID COVID. It's over. Like, let it go. You can't keep ripping me off. Because the COVID If you don't, I mean, companies like oh, we're we're making our packaging small. I used to buy these little cookies every couple times a year. And I wish I remember the name of them. Because I shame them right now. Hold on a second. I'm sorry. We'll get back to you in a second. I found them because they made good gluten free chocolate chips.

Mary 27:39
Like little small like brand cookies, or you're saying like a cookie.

Scott Benner 27:44
They were bigger. Like you'd get a few in a bag. And the hell is the name of them. This is pissing me off now. I really want to give them crap.

Mary 27:56
Yeah, like you have to call them out by name hates never heard of

Scott Benner 28:01
Tate's bake shop. And their cookies come in like a bag. There's two cellophane things inside of the bag. And then I forgot there's maybe five cookies need solve anything. These cookies used to be like a couple of like, maybe three inches across. And they were expensive. Okay, and they're gluten free cookies were really good. And there was a time when I tried to eat gluten free for a month. And that's how I found them. And so even after I stopped eating gluten free, I still would buy these cookies once a month and buy expensive. I mean, like six bucks, maybe for I don't know, 10 cookies or something like that. That's expensive to me. I'm very cheap. And I wouldn't bought them recently. And the cookies are so much smaller now. And I opened them up and that price is double married. I don't want to lie to you. I got in the car. I had gone grocery shopping. I'm gonna have one of these cookies before I drive home. And I opened it up. And this is what I said. You mother. Look at

Mary 29:02
me threw him out the window.

Scott Benner 29:04
myself in my car. I was like you see some pitches. The cookies are significantly smaller now shame on mutates there. There it is. I hope it gets back to them. I hope so. Give me the regular cookie size. I mean, we're not

Mary 29:17
gonna mail you like a box and then be like, we're so sorry. Like, this is what the demand was like, No, it wasn't.

Scott Benner 29:23
It was. What a cost cutting thing and nothing. It doesn't say on the bag. Hey, by the way, if you're used to our cookies being bigger, Gird your loins because we're gonna rip you off here like you know, like, at least give me a heads up. It's upsetting to me, obviously. Obviously, also see how uncomfortable I was with how emotional I'm feeling. And I'm just deriving the Convert directing the conversation so

Mary 29:47
I know it would make me feel better talking about cookie yelling about

Scott Benner 29:51
cookies. I don't. What I really care about right now

Mary 29:54
shaming a cookie company.

Scott Benner 29:57
You face there, that's it. Alright, They're, I love that you curse but you're from the Midwest, by the way, I don't know why that's intriguing to me.

Mary 30:05
It's actually very uncommon. So yeah, because when

Scott Benner 30:09
we were talking before we started, I stopped myself from cursing and you curse to let me know it was okay.

Mary 30:15
Yeah, I feel like that's a that's a thing that you have to do in the Midwest, like, you're like, hey, like, I'm chill. It's all right. Like, I'm not gonna shame. You

Scott Benner 30:22
know, I definitely wasn't sure if you're gonna make me go to church or hold me in a river or something like that. So does that reference make sense? Yeah, absolutely. Okay. I don't want to be held down the river. That's today. Not today. Not ever. Not today. Oh, you would just hear me complain? I'd be like, it's called Stop.

Mary 30:47
Oh, my God, like you. But please,

Scott Benner 30:50
I want to be cleansed. But I just don't want to be in this chilly water.

Mary 30:54
And the tear, please. Such a

Scott Benner 30:57
baby. All right. Okay. So I'm sorry, you have diabetes, and then things get off the rails. But when do you have your first medical issue?

Mary 31:06
Oh, that's a good question. When was my first medical issue? Well, like, after I graduated high school, I randomly had pancreatitis. And like, it's interesting, because the amount of times I've been in the hospital now, like, if you present to the hospital, and you say like, you're type one, they're like, oh, my gosh, they're in DKA. Like, like you just mentioned, you're diabetic. And that's like, the first thing they go towards. And I understand to a degree, but we also can have other issues other than our blood sugars. And so I had been camping and got really sick, nausea, vomiting, and go into the hospital. And they're like, Oh, I bet she's in DKA. Like, you know, as an 18 year old, like, I understand what you're saying, like, I can hear you talking and like, my blood sugars are fine. Like, I'm good. Finally, after running a bunch of tests, I was in pain. I had pancreatitis, you know, I get better leave the hospital two years later, it happens again. And I'm like, Well, this is weird. Maybe it's your gallbladder. Let's just take it out. And like before becoming a nurse, like, you just kind of trust everything. The doctor says like, oh, like, they went to school, they know what they're talking about, like, sure. That's probably it. And then now, like, being in the medical field, and like question everything, of course, you know, like, trust yourself, you know, trust your body. Like not to diss the doctors by any means. But you know yourself the best. And so we got the pancreas out. I mean, not the pancreas, sorry, the gallbladder out. Two years later, it happens again. And I'm like, okay, like, taking the gallbladder out, didn't help. By this point. I'm 22. Like, I'm on a pump, like things are going fine. Like I'm managing myself through college. I actually like intern with the Juvenile diabetes Research Foundation, like, get a job. They're like, I graduate from the University of Arkansas with a degree in Health Science. And I'm like, I think this is what I want to do, like work for JDRF. And then I was at that job. And I was like, You know what, like, I'm stuck in the office. I really wanted to be on the event side of things, and it just wasn't happening. And I was like, I've got to do something else. I'd always wanted to be a nurse. But can I tell you the amount of conversations I had had with people that were like, Oh, can you do that? Like being diabetic? Like, can you be a nurse like, yeah, yeah. And I was like, Oh, I don't know. Like, it kind of threw me off. Like, oh, I can't like I always thought I could, but maybe that's not a good idea. And finally, I was like, You know what, I'm just gonna do it.

Scott Benner 33:49
boots that would have let you go to the events.

Mary 33:52
Absolutely. Absolutely.

Scott Benner 33:55
That's your own fault.

Mary 33:57
Yeah, it is. I totally take

Scott Benner 34:00
when you so when you mentioned I want to be an RN, then I guess people think about like, hustle and bustle and running around and not having a lot of downtime. And then yeah,

Mary 34:09
thank you, like, just the crazy schedule, you know, like, I think for my generation, like having consistency really helped control, like your blood sugar. Like if you had a like, predictable, consistent day, like it left less room for your blood sugar's to, you know, go all over the place. And so like to be a nurse like in the hospital, like, would you have time to eat? Like, are you gonna be able to take a break when you need to, like, what happens if your blood sugar's going low? And you're like taking care of patients? Like I think there was just a lot of anxiety with the unknown of that.

Scott Benner 34:45
Yeah. Can I ask one more question? How aware of you at this time are you about your birth father's demise? Because they're very, because now people are like saying about you. Hey, why don't we just start plucking organs out Have her and I cuz I'd be like that's what they did to my dad before he died like that would have hit me that way. But

Mary 35:06
Oh yeah, absolutely, it came up a lot. Because like, let me tell you like I could probably sit here and talk to you for hours just about my story because it's just so like wild and bizarre and unusual from the normal path. But I even had a UBI this twice and like UVI This is like the inflammation of the middle layer of your eye. It's very uncommon, and like to have it twice is like extremely uncommon, like the eye doctors. The ophthalmologists are like, I've actually never seen anyone have it twice. And I'm like, Cool. Like, I'm so glad like I'm an anomaly, but like, can we figure out like, why this stuff is going on? Like, so between the UV itis and pancreatitis? Like, I I'm very, very aware that like this probably has to do with my dad, like whatever he had, like they couldn't figure it out. And like, can we please figure it out? Like I would almost rather have like a cancer diagnosis just because it's a diagnosis.

Scott Benner 36:10
Right? It feels like answer even if it's a bad answer. Like

Mary 36:14
even if it's a bad answer, like have this here.

Scott Benner 36:17
UVI. This often happens to people who have autoimmune condition. This is what Yeah, so hold on autoimmune conditions known to cause UV itis include. I never say this right. Ankylosing Spondylitis a condition where the spine and the other areas of the body become inflamed. Any idea? Any chance you have that? You're like, not yet.

Mary 36:43
Like, like, yeah, please don't like speak that into existence. But

Scott Benner 36:47
what that Oh, put that in my head. The spondylitis is gonna give you more context for it. A type of arthritis that causes inflammation in the joints and ligaments of the spine.

Mary 37:00
Yeah, no spine issue. It's up today at 34. But I'll tell

Scott Benner 37:07
that's, it's more common among men. Yeah. Don't worry. Only 200,000 people a year have it.

Mary 37:15
Yeah. There's a statistic about getting it again. But apparently that is very rare. As many as the Mayo Clinic ophthalmologist told me, yeah, I've never I've never seen anyone have it twice. Like, oh, cool.

Scott Benner 37:29
So don't feel good about that 200,000 number because that's the same number for type one diabetes. So you know, you might, that number might be for other people, not for you and, and people listening to this podcast. Wow. Okay, so does it clear up on its own the AI thing? Or did they do something for

Mary 37:48
it? No. You have to have been basically since it's just inflammation of the middle layer of AI, you just take steroids. And so I had to put a steroid drop in my eye once an hour for like 36 hours. Wow. So

Scott Benner 38:05
did your eyes lift weights after that? Or?

Mary 38:07
I hope so. affect your blood sugar? Yes, it did. Yeah. Okay. I did, but it was like extremely painful. And I think like, throughout my life, I've been like, I came to this realization like to like trust myself and like what's going on? Because I always felt like, I was like, I was being overly dramatic on what was going on with my body. Like, I, you know, I presented with this pancreatitis, and I'm like, You know what, my stomach really hurts. Like, I'm not crying like I'm not hunched over. But I'm like, I think something's going on. Like, my back hurts. My stomach hurts. I can't stop vomiting. And they're like, oh, yeah, okay. And like with the the itis I'm like, You know what, like, my eye like really hurts. I'm having a hard time seeing like, it's in a lot of pain. And then they're like, oh, my gosh, like, you have UV itis, you know, it's like, I always feel like I was have to like, trust myself, just because I don't present the way some other people do. Like, when I get really sick, I get like, really quiet. I don't want to talk. Like, I'm just not a crier when I don't feel good. And like, I just felt like people like, weren't believing what was going on with my body

Scott Benner 39:22
because you don't look the way they expect somebody to look when they're

Mary 39:25
not presenting the way that you would expect. And so when I got up, I just again, I was like, Oh, I already know what this is, you know, and I, when I went, I called an ophthalmologist and I was like, I need to get in today. And they're like, well, we don't have anything. I'm like, No, you don't understand. Like, I have UV itis like, I need the steroid drops. I have to get in today, you know, and 10 years prior to that, like I never would have been that patient. I never would have like I would have been like, okay, like, I can wait till tomorrow. It's cool. And I'm like, no, like,

Scott Benner 39:58
I'm just gonna come and sit in the Office? Yeah, like, exactly like,

Mary 40:02
I'll wait. Like squeeze me in like, I'll wait 10 hours if I have to, but I have to be seen today.

Scott Benner 40:09
Yeah, that's interesting. Wow. Okay, so you're advocating for yourself, obviously. What's the next surgery you have?

Mary 40:17
Yeah. So I finally decided to go to nursing school. I get in, in Oklahoma City. That's what brought me to Oklahoma City. I had a cousin that was living here, going to college here. And she was like, we could be roommates. It would be fun. I was like, perfect move to Oklahoma City. Start nursing school. And that's when my anemia started. And when I first was introduced to your podcasts, I listened to your daughter's story and, you know, heard about her anemia. And I'm like, there has to be, you know, like, we all have some connections in our stories. And anemia was my like, first time that something was going on with me. I would walk myself into the ER and be like, I think I need a transfusion. And they would be like, Oh, okay. I'm like, no, like, I'm having a hard time like walking up a flight of stairs, like, I feel really exhausted. And they were like, well, like you're in nursing school, you're working full time. Like, you know, and then the bloodwork would come back. And my chemo globin would be like, 5.8. And they'd be like, Whoa, okay, yeah, you do, I would get a transfusion. And then I would go about my day. And we were like, We gotta get this figured out. Like, why are you like, losing so much blood? Like, what is going on? And I'm in nursing school at this time. So like, which was horrible, because I'm like, learning all this stuff. And like, I'm one of those people that like ignorance is bliss in this situation, because I'm like, this could be really bad. Like, why am I having all these transfusions, like, you know, I'm opening my nursing books, and like just finding all these outrageous things that could be going on and just freaking myself out. And the transfusions got to become like, where it was like, every couple of weeks, I think the most I would go would be two weeks without needing a transfusion. Oh, my God. So at that point, we're seeing a whole bunch of doctors around the, the area. I think I saw like eight or nine specialists, and then my, over the Christmas break, my parents were like, You need to take off some work, like come back home. Let's see some doctors around here. So we can figure out like what's going on? Like, okay, cool. So we do a bone marrow biopsy, and everything is fine. We still can't figure out what's going on. And I saw a doctor that was like, You know what, I bet it's stress, like stress. I don't think so. Like they tried putting me on like anti anxiety, medication, sleep medication, throwing everything at the wall to try to figure out what was going on. And thank goodness for like, again, like my parents have, like saved my life. On multiple occasions. They started like requesting that I be seen at specialty hospitals. So we tried to get into the Cleveland Clinic. We tried getting into MD Anderson. And finally we got into the Mayo Clinic in Rochester, Minnesota. So mind you, I'm still in nursing school at this point. Yeah. So we're like, Okay, we'll do it over spring break, which happened to be my birthday. So I didn't have to take off any school or anything. And we go to the Mayo Clinic over spring break, like all my friends are like, partying it up, like going to the beach. And I'm like, I'm gonna go to the Mayo Clinic trying to figure out why. Like, I keep having this anemia issue. We go to the Mayo Clinic, and they do like a full body workup. And they're like, You know what, like, we don't think you're producing enough urethral cleeton, which is like the hormone that helps produce red blood cells. And they're like, Okay, and they're like, you can do these like eco shots, and it should help. And we're like, okay, cool. So we do like an eco shot, like, it doesn't help. And then like, I kid you not. On my birthday, we do this kidney biopsy. And it can't turns out like two of the three tissue samples were already necrotic and they pull us in a room and they're like, telling us about this biopsy, and they're like, We think you're gonna need a kidney transplant. And we're like, what? Like, I'm in nursing school. I work full time as a medical assistant, like, like to hear that like you need a kidney transplant, like possibly soon, like, it was very vague. was just like, I mean, that was like life altering. I mean, not to be too dramatic, but it was like, it was it was hard to understand. I remember for the next couple of days, we were like what like, my blood work was all normal, like as far as kidney function went it like I had my diabetes under control, like the insulin pump was so helpful. Like, I was like, super confused. And of course, like, in my head, and then my parents and my family is it's like, Oh, this must have something to do with like, what's going on? Like, what happened with your dad? Like, you know, like, we know he has something autoimmune, but we just don't know what maybe this is it? And so I have this feeling that like, are we just putting a bandaid over something much bigger, much bigger. And spoiler alert, we we didn't find anything. So we are still look, I guess, in a way, like putting band aids on. But

Scott Benner 45:42
let me clarify for a second for people. So the Yeah, what was happening was is that this hormone that you seem to be deficient in, it helps the kidney something it's something in the kidney that stimulates red blood cell production.

Mary 45:58
So you're actually made in the bone marrow donors to the kidney, okay. Okay. So,

Scott Benner 46:03
in general, the way your path worked here is when you when you're anemic, and you're not bleeding, they just think you have cancer, like that's the right, that's the first step. So then they rule that out. And then you dig deeper to find out that there's a problem with this hormone and the stimulation of red blood red blood red blood cell production, which makes sense for you being anemic, but then they dig further into that and see that the reason that's happening is because you have kidney damage, Mm hmm. Okay, yes,

Mary 46:35
there is a way and I'm not very sure on how, like, you can see if it's damaged from diabetes, or if it or just other. And so they did do that. And it wasn't from the diabetes. Now, I will tell you, I having type one, I don't think ever helps. I don't, you know, like, the years that I struggled and like just being diabetic in general, I don't think our our organs are like gay. But they were able to see that like, the, the dying of the kidney cells, like wasn't diabetes related. So they're like, hey, like, there is this possibility that like, you could like, just have a kidney, pancreas transplant, and then you wouldn't be diabetic anymore. And like, I've never even heard of that. And I was like, Well, that might be diabetic. That will be cool. And they're like, Yeah, you take the same medications for it. But the thing is, is like you're probably going to need this transplant. So we would want to do the kidney first, and then maybe come back and do the pancreas later. And it was just so overwhelming. And they were like, You know what you can like, you can stop school. And I was like, No, I'm finishing school. So after spring break, I went home, finished nursing school, graduated, took my boards became a nurse. And then that October, I had my first transplant. It was actually a childhood friend of mine. Like we have been friends since I was like three. And she ended up being like a perfect match. Like even over like relatives. She gave yourself she absolutely did. Yeah. Like couldn't ask for a better friend, right?

Scott Benner 48:12
No, I mean, Jesus, she's on the Christmas card list forever. Absolutely. What year is this?

Mary 48:20
This is 2015. Yeah.

Scott Benner 48:24
How do you do that? Facebook? Phone calls? Yeah. How do you go, hey, everyone who wants to give Mary a kidney?

Mary 48:31
Right. And so I don't even have a social media. I mean, I do have a social media presence that I'm not one to even like post. I'm just kind of like a silent member. So my mom, like, she was keeping everyone updated with like, what was going on with me, you she would, you'd be like, hey, like we saw these doctors today, things are looking good. So people were kind of waiting for an update about the mayo trip. So that was kind of the way we got the word out. And then really just by word of mouth. So she just kind of put like, hey, we kind of have some sad news, she's possibly going to need a kidney transplant. And within the next year, like if you are interested in finding out if you're a match, like get with me, and I'll send you the information. And so I was very blessed to have a lot of people interested in being the donor and then I feel some sort of guilt. You know, like, I don't want to take anyone's kidney from them. Like it was. It was a difficult time.

Scott Benner 49:31
I think that's an astonishing thing to do. Yeah, I did donate it or a healthy Oregon. Like, I can't wrap my head around doing that. For some.

Mary 49:41
And like a year prior to that my uncle had just randomly donated a kidney would just just another bizarre piece of the story. I can't

Scott Benner 49:50
believe you're back from that many people. I feel like the people I know would be like I didn't see that post. Sorry. I wish I would have it If I would have given you my kidney, but I didn't say it. Yeah, no, I, I assume no one would.

Mary 50:07
Yeah, it was very sweet. And like I'm type O which like we're the universal donators, but like in order to receive, like, you have to have my exact same blood type. So that narrowed it down a lot. There are like, are over 100,000 people right now on the kidney transplant list, like if you just want to wait, but mine was getting so bad. Like, they were like, you probably should try to find someone, because I was fine just being on the waiting list, but the average was like six years. And then on top of that, what was my blood type? It could be any even longer than that. Were you gonna have to do dialysis

Scott Benner 50:42
if you went that way? Mm hmm. Yeah.

Mary 50:45
So we had the first one that October. So we went from March to transplant in October, total shock. until like, the path I was on, I did become a nurse. And so I was learning, I was still learning about all that was going on with my body while also experiencing it. And it further solidified, I wanted to be a nurse. So because I can tell you like the many times I was in the hospital, like, I may not remember what I was there for or what was going on. But like, I remembered the nurses, like if they were kind if they, you know, truly took care of me like, the nurses are what made the difference in my hospital stays. So I was like, Okay, I'm on the right. career path here. Like, this experience will just help me once limps on better. So we have the surgery, everything went great. Kidney function is great. diabetes is still going well, I had a very hard time recovering. It was a very rough recovery for me. I didn't eat for 10 days, I was having a lot of like, post procedure, nausea. And so when they started talking to me about having the pancreas transplant, I just said absolutely not. Like no. I'm like, do I have to? And they're like, no, but like, you could not be diabetic. I'm like, cool, but no, like, that surgery was so awful. Like, I don't ever want to experience that again. And they're like, Okay, well, maybe you'll change your mind later. So a year later, they're like, Are you sure you don't want to like, it's, it's already the same medication, the only thing would be as like, he wouldn't be diabetic anymore. I'm like, Okay, fine. Like that does sound nice. So they put me on the pancreas transplant waiting list, which is significantly smaller, it only has like 200 people versus 100,000 people. So they're like that, it's very high possibility, it'll pop in. So in 2018, I did have a pancreas transplant. And the recovery was a little bit better. I'll still say it was rough, but it was a little bit better. But I wasn't diabetic anymore. And like my life, like, when I tell you that transition was weird. It was very weird. Like, first of all, so many people haven't even heard of that pancreas transplant. So the idea of me not being diabetic anymore was just unheard of. And I couldn't get it out of my head. I was like, constantly thinking about what my blood sugar was thinking about the carbs I was eating. I didn't change my diet at all, you know, people would be like, do you want to go get an icy or, you know, we should have like an ice cream party to celebrate? And I'm just like, no, like, you know, I'm just happy for my organs like, it was. It was interesting, but I was I was grateful for it. I will say the thing that I wish I would have researched prior to this is that they do not have a very high success rate. And I wish I would have researched that better.

Scott Benner 53:55
Because how long did you not have diabetes for

Mary 53:59
like, almost two years, almost two years. So the pandemic comes March of 2020, if I'm remembering correct, and then May of 2020. I go into the hospital and DKA like when they told me my blood sugar was 500 I was like, okay, like it failed. You have bloodwork like monthly and they check like your pancreatic enzymes. That is like one of the first signs that your pancreas is failing. That didn't go that way. For me. It just it just stopped one day just stopped working. Went back into the hospital at the Mayo Clinic and they were like yeah, actually like this is actually pretty common. Like the pancreas is a very vascular organ like for it to work and last, you know, and I'm just like, Where was all this information?

Scott Benner 54:52
No one mentioned that in the brochure.

Mary 54:55
Yeah. Right. I'm like, oh, like maybe Yeah. And like we talked about earlier, like, you can't you can't sit there and go like, what if I, you know, go back and like change any decisions? But

Scott Benner 55:08
did they offer you another one? Like on a bike?

Mary 55:11
They did? Yeah. And I said, No, I was like, You know what, like, we have made so many advancements, like, between the decks calm and now like, the tandem pump, which is what I use, like the control like you like, and this has been my whole life. Like, I'm not interested, like, I'm not interested in having another one. And they're like, Okay, well, if you ever change your mind, let us know. And it's, you know, it's been almost three years now. And I have no desire to go through that again, just because I feel like I would still be checking my blood sugar, like worrying about going back into DKA. And, of course, when you go into DKA, that doesn't help like your transplanted kidney at all. So

Scott Benner 55:57
not looking, not looking at tax that thing? For sure. Yeah. How are the anti rejection meds? Are there a lot of them? What's the process?

Mary 56:06
Yeah, the anti rejection meds, I'm on three, the biggest side effects is like GI issues. And so you really just have to, like work on finding like the right dose, like, you want to make sure you're taking a high enough dose that keeps your immune system suppressed in order for that organ to like, stay and be like, not try to reject, but also like keeping those symptoms like from taking over your life. So that takes a little bit of an adjustment. But once you get them adjusted, it's fine. So you take prednisone and then you take two other anti rejection medication, medications, you take them twice a day, every 12 hours. But like, that's not hard. Just make sure you set your alarm.

Scott Benner 56:53
I have an interesting or maybe stupid question. Do you have? Did you have any other like auto immunity things that have kind of dissipated since you're on the since your immune system is being tamped down? Like did you have any joint pain or like any other way? Oh,

Mary 57:12
yeah, I know exactly what you mean. And no, I have been fortunate to not have not anything else things

Scott Benner 57:19
go on,

Mary 57:20
arise. Yeah.

Scott Benner 57:21
I wonder if like, I don't know. Like, I wonder if that wouldn't have helped your father at some point to kind of quit? Oh,

Mary 57:29
definitely. Yeah, you

Scott Benner 57:30
don't I'm saying

Mary 57:32
my family like got a hold of like, all his medical records, like hundreds and hundreds of medical records. And like, I read through them, and I'm just like, man, if if he had the technology that we had today, like who knows

Scott Benner 57:47
what they could have figured out because it could have figured out I said something so telling about his story. You're like they did exploratory surgery. And that really isn't a thing anymore. But they don't cut you open and just poke around.

Mary 58:01
No, and they did I remember when my family told me that I was like, what they're like, yeah, just like a why like, just a line up your stomach and then like, just, they just open you up and they just kind of look to see what's going on.

Scott Benner 58:15
Yeah, yeah, there's so much more that can be done from the exterior of the body now with with technology and imaging and and better testing and everything. It's so fascinating look inside of like, just two generations, you know? Yeah. Oh, absolutely.

Mary 58:31
No, absolutely.

Scott Benner 58:33
What's the how do you feel day to day? Like they actually stop I'm stopping myself. I want to go back two years you don't have diabetes because you have the transplant. But you couldn't shake the feeling that you were diabetic? Yes. It just didn't go away. So was it not relieving psychologically to have the new Pancras?

Mary 59:01
No, I want to say it was I mean, it didn't enter. It wasn't like a daily thought it didn't enter fear to where like, I wasn't enjoying not changing pomp sites and you know, changing decks comps, and honestly, the financial relief was really nice. Like, there are a lot of things to be grateful for. And I did I did enjoy it, but I would be lying if I said like, anytime I didn't feel good. That was my first thought or an I never got over the fact of like looking at a meal and just knowing how much insulin that would have. Like,

Scott Benner 59:41
yeah, that didn't go you every meal you looked at you guys is like five years. Yeah.

Mary 59:45
Yeah. And like, like I said, I don't really have a sweet tooth. So like, yeah, of course, like I ate more carbs. Like when I would like go to a restaurant and have like three roles instead of like one I'd be like, Wow, Like in my head being like, you know how much insulin this would take, like,

Scott Benner 1:00:04
I'm gonna have another role like a crazy

Mary 1:00:07
control now

Scott Benner 1:00:09
where the doctors at all like, they just call it a failed transplant it's not your your immune system didn't come for the pancreas. Right? Yeah. How did they tell the difference between that Do you know?

Mary 1:00:22
I don't know. But I know that like I said it's like another like mystery like huh like usually this shows up in the bloodwork and like there's things you can do to like prevent it from completely failing, you know, because they do tell you that like you're gonna get these enzyme checked. And if these enzymes are elevated, then we're going to increase you know, your anti rejection meds or because the pancreas is a very vascular organ like you were also on blood thinners. And so it could have gotten a clot. And if there's a clot and it's not working, you know, and so like they ran all the tests, they did the ultrasounds like there's no clot like, and the enzymes are still normal, yet. It failed.

Scott Benner 1:01:11
Hey, were you like, you gotta be kidding. Yes. I mean, I would have, like I'm on

Mary 1:01:16
this day. I'm like, can I just like, Can I not

Scott Benner 1:01:20
do that pile and pulled out a bed, pancreas and gave it to me?

Mary 1:01:24
Like, can I have something normal happen? Like, they're always like, wow, like, what a mystery. It's like, I'm tired of being here. Mystery when I

Scott Benner 1:01:34
terrific. Yeah, yeah. Yeah,

Mary 1:01:37
that sounds I'm sorry. Well, good. Oh, I was gonna say like, I told you, I could talk for hours. But the pancreas transplant process like you were waiting, like, you know, you that can only be from a deceased donor. And so you had to have your phone on you at all times. And you're waiting for this call. And like, when I finally got it, it was the third call, like I had been called twice, and then it ended up not going through. And so that's another thing I didn't want to go through. Like, I don't want to be attached to my phone, again, like waiting on this call and having to drop everything to go have a transplant. Like there's just so many reasons that you

Scott Benner 1:02:16
just did not about the process. Yeah. And and the outcomes that you see is not something you want to go through again,

Mary 1:02:22
no. And I think like the technology that we have today is a huge reason for that. I mean, if this was when I was nine, and I was diagnosed, like Yeah, Sign me up. But like, my control is like my last day Wednesday was 5.2. Like, I couldn't be happier with the tandem and the decks calm.

Scott Benner 1:02:42
I think it's such an interesting part of your story, that, that you're like, it's okay, let's not do it. But I think that I think people hearing that will think that you are somehow special in the way you manage your diabetes, because you don't talk about, like, you talked about the stress and the anxiety of the transplant process, but you don't talk about the stress and anxiety of having diabetes, whereas I think other people would hear that and think, Well, there's stress and anxiety somewhere. But why are you not up? Like, why does having diabetes, not bother you?

Mary 1:03:18
Oh, yeah, that's a great question. No,

Scott Benner 1:03:21
I'm just kidding. You're full of them.

Mary 1:03:24
Even like, and I do have to give like a huge shout out to even your podcast. And that's not a lie. Like, we didn't have social media. When I was diagnosed, I didn't have a diabetes community. My parents did send me to diabetes camp, and I cried when they left because I didn't know anyone. But like just having the access to all the information. And just really the Dexcom in the control IQ. And just being able to like, resource yourself with the best knowledge you can have like it really the flexibility and I think my generation understands that more than anyone like, this could be so much worse. Like we have so much freedom. And that's something that I give your podcast a lot of kudos for is like, hey, actually, like this doesn't have to change the way you live. Live your life. Like

Scott Benner 1:04:23
that's very kind, but there's something about you. You don't know what it is, though. Hmm.

Mary 1:04:28
I don't think I know what it is. No, I think, I think maybe because it's, it's all I've known. You know, like, I just diagnosed when I was nine. It's just like, it's just a part of life.

Scott Benner 1:04:39
I don't know my back's hurt most of my life. And if you told me I could get rid of it, I wouldn't be like, Don't worry, I'm used to it. Like, there's something about you. You don't, it's fine. You'd be the wrong one to ask. You don't know why you're wired the way you are. And you don't and you don't see yourself as that. You see yourself as you see you you don't know. But there's something there. Are you mad?

Mary 1:05:00
worried? No, I'm

Scott Benner 1:05:01
not ever No. No care to me.

Mary 1:05:05
It's Sunday. Yeah. Sunday, I'm really more of my parents left. Like, since my mom like lost my dad tragically, like, was very much like, learn to take care of yourself, like don't rely on anybody and like everything I've been through, I'm just like, I'm very content like, in what I'm doing. And

Scott Benner 1:05:25
that's what I'm trying to get at, like, I'm trying to figure out if it's, I'm trying to figure out if it's that you've got deeper perspective than most people. I would think so. And the diabetes is just like, at least nobody died. You don't I mean, or somebody who, at one point in your life, you're like, I probably have cancer. And that didn't happen. And so you have, you don't I mean, but there's a even like, just going back to nursing school. When someone says to you, hey, you're gonna need a kidney transplant the next year, and you're like, Well, I'm just gonna go back to Oklahoma and get my RN first. And then we'll come back and do that transplant thing. Like most people would be like, Yeah, that's a good idea. Let's transplant the kidney. And then I'll go back to school after that. So are you stubborn?

Mary 1:06:10
Very, very,

Scott Benner 1:06:12
in a pleasant way? Or like if we dated what I hate you which, which? But I'd be like, Oh, my God never bends on anything? Or would you just you just stick to a person?

Mary 1:06:24
I think it's more of a stick to a person. I mean, I don't know. You have to ask my ex boyfriends, but

Scott Benner 1:06:31
either think there's like a group of guys like they get together once a week. And they're like, it's like their support group for having dated very, yeah. Wow. Is there anywhere? Is there any way I can't call this episode? There's Something About Mary. Absolutely. After, right. Yeah, very fitting. Because before that I all I had was Mary had diabetes, and she didn't have diabetes. And she had diabetes again, which seemed to work

Mary 1:06:58
very well. Yeah, that's very long.

Scott Benner 1:07:01
That's like, that's gonna be too long. Or guests who has diabetes? Or everybody heard that? It's not there. I'm going with There's Something About Mary. Because there's because I am being serious. Like you've, you've highlighted a number of different decisions, that I think most people would have gone the other way on. And you're very and you seem happy. I am. Yeah. Yeah. Yeah. Hi, right. Yeah, no, I don't think you heard me. You're not high right now. Right? Oh, god. No. Okay. You're not happy because you're altered? Yeah, I'm not Kate. Is that a word? Yeah. Okay.

Mary 1:07:46
Never caked.

Scott Benner 1:07:47
I didn't I've never. Oh, finally, finally, me learning something about about drug culture that I didn't know already? Yeah, I mean, it's just, it's interesting. I come across this a number of times, where you ask a personal question about themselves. And you can just tell like, they don't know the answer. And I understand it. You know what I mean? Like, I understand, like, there are things I do, I don't know why they happen, or why they work or don't work, or some, you know, something like that. It's just interesting in this context. Yeah. Is there anything we didn't talk about that we should have?

Mary 1:08:27
Man? I don't think so. Like I said, I know we're running over time. I didn't even get to tell you that the first kidney failed, and I had to go on dialysis for a year, but we don't even have to talk.

Scott Benner 1:08:39
Very, why did you bring that up? Okay, hold on a second. So the friend that gave you the kidney, you don't have that one anymore? What's the what's the process you go through to go tell that person that that happened?

Mary 1:08:55
Gosh, it was it was difficult, because, well, the way it happened is you know, the pancreas like 2020 was just a really bad year for me because the pancreas failed in May. And now I get back on the pump. I've adjusted to that mentally. And then in July, I get dehydrated, and I go to the hospital and like I can't even make this up. Like they forgot about me. Like they forgot about me in the room. I get really sick. I'm left alone for two days like my insulin pump dies. That's like a whole other episode in itself.

Scott Benner 1:09:32
Abandoned in a room in a hospital. Nobody knew you're there. And you were too sick to get help.

Mary 1:09:38
Yeah, yeah. I know. Oh, my

Scott Benner 1:09:41
God, what state was this in Oklahoma. I move immediately after that, but that's okay. So how does that happen?

Mary 1:09:51
Yeah, it was. It was horrible. I went in for dehydration. I get admitted of course like when you when you're diabetic and you've had a transplant, like staying overnight to be observed is like pretty common. And I'm fine with that. There's been like several hospitalizations, which I could go on a whole tangent about how people don't understand type one versus type two. But like, they would try to take my pump off of me. And I'm like, that's fine. Like, you can monitor my blood sugars and insulin, I understand that, like, if you're going to take my pump off, you're gonna have to give me some background insulin, like, I'm gonna need some Lantis or, you know, and they just like, there's just no comprehension of that. And like, that's something I want to work on. Like, let's educate people with type one. Because like, there's just, there's just not a great understanding of it. I'm in the hospital setting. And so I lie, and they're like, Well, you turn your pump off, I'm like, Sure. And so but I didn't, I kept it on, because they weren't going to give me any background insulin. And so I let them give me like, Bolus insulin. And then like, they just stopped coming in to check on me. And like, I'm getting worse and worse, the pump dies, my cell phone dies. And so it was 2020. And so you weren't allowed to have visitors at the hospital. And so my mom would just call and check on me. And when my phone died, she was like, okay, something's wrong. So she like barges into the hospitals, like, where's my daughter, and like, comes in, and like, I am like, I'm almost dead. Like, I almost died, like I'm on 10 liters of oxygen. They have to, like, put a central line in my neck. Like without even numbing it. Like they couldn't get a line started. It was It was horrible. I luckily, I don't remember a lot of it. I think my mind like mentally blocked it for a reason. Because it was so traumatic. But I remember, once I started to get better, they were like, yeah, like your kidney didn't make it. And I'm like, Well, that makes sense. You know?

Scott Benner 1:11:54
Your kid didn't make it. I almost didn't make it. You're like, Listen,

Mary 1:11:58
I'm glad to be alive. So

Scott Benner 1:12:01
then you in the hospital, they have to find you another kidney right away. No, you can't do that. There's, it's not going to happen. You have to go on dialysis.

Mary 1:12:09
Yeah, yeah. So it's one of those situations where it's like, it's one

Scott Benner 1:12:12
of those situations, Mary, nothing you've said today is one of those situations. Very specific stuff.

Mary 1:12:20
But it's, it is yeah. So they basically just say like, I mean, it didn't completely fail, but it's like it's on its way down. It's one of those things where it's like, hey, like, you don't have to go on dialysis immediately. But like this, this isn't gonna make it like long term. So I think for like my friend that donated the first one. Like, there was a little bit of understanding there because it was, it was really, truly out of my control. I think had I like not taking my medication or wasn't taking care of myself, and it failed. There would be a lot of guilt there. But she knew like what happened with the hospital. And I think it was just a mutual, like, mutual understanding that like, there was nothing I could do.

Scott Benner 1:13:05
Oh, I bet when you left her house, she went the other room and she was like, son of a bitch. I go, I would have been so pissed at you now that you by the way, just did that the whole thing. I would have been. Oh my god, I gave my kidney to marry. And now she doesn't have it anymore.

Mary 1:13:21
Exactly. Like, can we burn this hospital down? Oh, I

Scott Benner 1:13:25
would have been so mad. Oh my god, I can't even explain to you the anger. I haven't now and it didn't happen to me. It's infuriating. And maybe you want to say it's no one's fault. But though it's pretty shaky. What happened to you at the hospital? So do you think if you would have gone in there and been treated? Well, you'd still have that kidney?

Mary 1:13:46
Oh, for sure. I went in for dehydration. Yeah, like, my blood like, and like we even have the records like my blood sugar on admission was 108 like an hour that will be permanently engraved in my head. Like, there was no reason I should have gone into DK. You don't

Scott Benner 1:14:01
do somebody over this. I'm just asking. You know what,

Mary 1:14:04
that's interesting. I actually have an uncle who's a lawyer. And those are really hard to prove. Because like, unless you're dead, like they have, like, people document that they do stuff that they don't like, it's really it's really one of those cases where it's hard to prove and it might be traumatic for you. I think that was like another issue was like was I really ready to like go through all of that again. So I mean, you know, still can it's only been three years but

Scott Benner 1:14:39
so yeah, okay, so Tom, so you have to go on on dialysis for a while and then they find you another kidney and now you have that one.

Mary 1:14:48
I went on dialysis for 10 months, and actually my aunt ended up being my second kidney donor and it's working beautifully on real

Scott Benner 1:14:58
you got another part I can't give you a kidney. Mm hmm. No, I can't. I wouldn't advise you and I was like, Listen.

Mary 1:15:10
You got a lot going on.

Scott Benner 1:15:12
What did George Bush say that day? Fool me once. Fool me can get fooled again.

Speaker 1 1:15:19
What if my favorite like misc like somebody's trying to say something and then saying it wrong. It has nothing to do with politics for me. He just Do you know this you're kind of young you might not know this, though George. Yeah. Do you know that? Absolutely. Yeah, that's fantastic. Yes. There's an old saying around here. And then he wants to say, fool me once. Shame on you fool me twice. Shame on me. He wants to say that, but he just says like, it's just so damn funny.

Mary 1:15:50
Can't be fooled again.

Scott Benner 1:15:53
Fool me Don't get fooled again. Like, he just gets into it. And he realizes, I don't know this quote, and he just rolls through it as fast as he can. And you know, he had that like weird. Like, when he was embarrassed, he'd get that like, hey, look on his face. Yeah. That's great. I'm gonna find the audio and put it in here when I it's just so funny. Anyway, I that's I imagined your ampion like that for me once, baby. But that's really wonderful.

Mary 1:16:22
Yeah, yeah. And being like blood related, I think, has also been great. Because like it is, I cannot ask for a better kidney like it is functioning perfectly. That was in September of 21. And no issues. So I'll be very, very, you know, and it's hard to like, find people that like, don't drink and don't do drugs. And like, my aunt is one of those people. And she had a perfectly healthy kidney. And when they went in to take it, they were like, actually, like, you have two arteries connected to this kidney. Like you probably won't see any effects from having this surgery. And that made me feel good. Because taking someone's kidney was hard the first time and it's definitely hard. The second time, there's no way it seems that like you just get used.

Scott Benner 1:17:13
Yeah, no, there's no way you didn't think I'm gonna take my ass kidney. It's gonna fail. Right? Yeah. And then I have to go tell her then what happened? Oh, yeah. Oh, my gosh. All right. Well, this was terrific. Um, you were, you're a great storyteller and, and lovely to listen to. I can't tell you how, yeah, how generous it is to be to come tell this whole story. Thank you.

Mary 1:17:36
I just hope it encouraged someone you know, because like the podcast, really has been like really, mentally helpful for me. I actually didn't even hear about it until one of my best friends husband's got diagnosed at the 32. And he was like, Hey, do you ever listen to the Juicebox Podcast? I'm like, What's that? Like? He's like, Oh, you gotta listen to it. I think you would really like it. And I just like binge listening to it. And I think I emailed you at like, 11 o'clock at night. And I was like, I love your podcast. Like, I wish this was around. When I was younger.

Scott Benner 1:18:08
I get a lot of emails like that. They freak me. Well, I was very nice. I just, even just now when you said that you're, you know, you know, a person who got diagnosed, and they said, Have you ever heard the Juicebox Podcast like, that is otherworldly to me that there's a person having a conversation like that out in the world. And I know it happens a lot. But it's hard to have no idea. Yeah. It's hard to like, I don't know what it's hard to do. It's hard to accept, I think on this side. That is how I bet. Yeah. All right. I'm gonna read it to you. There's an old saying in Tennessee. I know it's in Texas, probably in Tennessee. That says he's already like, he's already lost. Like, because I think I think he's in Texas, and realizes that after he says Tennessee, I'm gonna have to I'm gonna do a deep dive on this. Anyway. There's an old saying in Texas. I know. It's an unknown. Hold on now. all messed up. There's an old saying in Tennessee. I know. It's in Texas, probably in Tennessee. That says, fool me once. And then you have to hear the audio because there's a long pause. He goes shame on. Shame on you. Fool me. You can't get fooled again. The roasted the Oh my god. It's if no one's heard it. Just Google it for God's sakes. Hilarious.

Mary 1:19:28
No, it's like that clip is used in a song. Is it really? Yeah, there's a jay Cole song, which I'm guessing you don't listen to rap or hip hop?

Scott Benner 1:19:38
Well, I do I do. If my son's around, but his stuff. Yeah. Yeah. He hasn't done Jay Cole in a while. I don't know. I don't know what he's up to. Actually I do know what he's up to. Now. He tried to tell me the other day that I have to what music was he given me the other day? I don't know if I saved it. I mix something. Hell, he's at work or I would just text him.

Mary 1:20:08
So if you were feeling really inspired, you could look up Jay Cole's no role models, and he samples it and that song,

Scott Benner 1:20:17
I'll find that I've heard I think I've heard that before. But I'm just gonna like, hold on a second

Unknown Speaker 1:20:28
there's an old saying in Tennessee, I know it's in Texas, probably in Tennessee. This is Fool me once. Shame on. You. Shame on you.

Scott Benner 1:20:42
Boom, can't get fooled again. Alright, that clip, that clip adds laughter to it, which is not necessary. Whoever did that. It's hilarious enough on its own. I'm gonna find the clean the clean version of it. It's just like, you're watching him. And you could see on his face. He's like, I don't know what I'm talking about. And I can't stop now. Yeah, now.

Mary 1:21:05
See, it's so great when it's sampled in that song too. Because like, I don't even think a lot of people remember that.

Scott Benner 1:21:11
If I it's one of the favorites. It's one of my favorite things has happened in my lifetime. Like gets you so awkward. If I was a politician, I would go. If I got in that spot, I'd stop and go you know what I was just going to there's a saying I was going to recant to you. And I just feel like me. I can't remember right now. And I would just keep going. Like, I don't know why you would like, I don't know why.

Mary 1:21:36
I wanted to be internet famous.

Scott Benner 1:21:40
He is. He is for me. It's one of the best things that's happened in my lifetime as far as I'm concerned. Top 10 No, it's wonderful. That and you trick and two people to give you

Mary 1:21:52
Yeah, you're welcome. All right. I made it in the top.

Scott Benner 1:21:55
No, very. Okay. All right. The you were again, terrific. I will. Let me let me stop the recording and say goodbye to you. First things first, pay First things first, Mary, what a great, great interview. Thank you so much for coming on and sharing your story. I have the soup to nuts answer. I'll put that at the end. But I want to thank Dexcom for sponsoring this episode dexcom.com forward slash juice box head over now. Get your benefits check get started. Or just look around. And on the pod thank you to Omni pod five and Omni pod dash m the pod.com forward slash juicebox. Same thing go check it out. Might even be able to take a test drive of that pod check one out right in your house for free. Use my link find out more omnipod.com forward slash juice box links in the show notes links at juicebox podcast.com to these and all the sponsors. Okay, you ready soup to nuts. Pretty self explanatory once I looked it up, I think I was on to it at the beginning. From beginning to end soup to nuts is an American English idiom that conveys the meaning of from beginning to end derived from the description of a full course dinner. Soup to nuts. I guess you used to get nuts at the end. I guess the nuts come at the end and the soup at the beginning. So soup to nuts. Also, fun fact the 1930s feature film starring a trio of kooky people who later became known as the Three Stooges was also called soup to nuts. This episode is called Something About Mary. But it was almost called Fool me once. Played still could be am I about to talk myself out of the title? I have the title written down as There's Something About Mary because Mary's terrific or something about her. You know what I mean? But for me once, that's the George Bush thing. Hmm. I don't know. I guess I'm gonna surprise myself. Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast.