#911 T1D, Lupus and Epilepsy
Makayla has type 1 diabetes, lupus and epilepsy.
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Scott Benner 0:00
Hello friends, and welcome to episode 911 of the Juicebox Podcast.
On this episode of the podcast I'll be speaking with Mikayla, she's a 22 year old type one who has a seizure disorder, and lupus. 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. I got some stuff for you here, you can save 10% off your first month of therapy, when you go to better help.com forward slash juicebox how'd you like to save 35% off of pajamas, bedding, towels and so much more you can at cozy earth.com Just use the offer code juice box at checkout to save 35% Their stuff is soft, it is quality and you will love it cozy earth.com use the offer code juice box at checkout. If you're looking for community around diabetes, check us out on Facebook Juicebox Podcast type one diabetes is a private Facebook group with almost 40,000 members in it. There's 110 posts a day, someone there 24/7 If you're looking for community and support. That's the place. This episode of The Juicebox Podcast is sponsored by ag one from athletic greens. I drink ag one every morning and you can to athletic greens.com forward slash juice box with your first order you'll get five free travel packs, and a year supply of vitamin D where you use my link athletic greens.com forward slash juice box. And if you're already an ag one drinker, no shame in the game. If you switch over to me, you know I'm saying if you're getting through another link, get it through Scotties link athletic greens.com forward slash juice box on September 16 That touched by type one annual conference is happening in Orlando, Florida. You can go to the website right now you click on programs go to it. It says Where can I see a list of speakers and sessions it says We are finalizing this list check back in a couple of weeks to view the complete list of speakers and sessions. Here's what I know. I'm gonna be there. And I think some other people you like are gonna be there too. I don't think I'm supposed to say their names. But I mean, Jenny touched by type one.org. Check it out, would you head over there?
Makalay 2:39
My name is Michaela. I'm 22 years old. And obviously I'm type one diabetic. And I've been diabetic for 15 years now.
Scott Benner 2:48
Wow. That's seven years old when you were diagnosed? Yes, I was seven. You're impressed at all with how quickly I did that.
Makalay 2:58
I am Thank you.
Scott Benner 3:00
Thank you very much. There click with math. It's my goal to impress people who are bad at math with my math.
Makalay 3:07
You impress me because I'm not good at math at all. So
Scott Benner 3:10
I could tell because you just take the 20 and you subtract the 15. Right, and then you're left with five and you add two and you have seven it's pretty quick.
Makalay 3:16
Perfect really quick. All right.
Scott Benner 3:20
So do you have any brothers or sisters?
Makalay 3:23
I do actually have a really big family. I'm the youngest of seven kids. So I have four older sisters and two older brothers. And then I have three brother in law's now and four for how many? I have one niece and three nephews and four on the way
Scott Benner 3:43
and Jesus are their siblings younger than you are right. Um, no, I'm
Makalay 3:47
the youngest. The youngest. Okay.
Scott Benner 3:49
We'll get there. My math fell apart in two seconds. Okay.
Makalay 3:52
Yeah, that's a lot.
Scott Benner 3:54
So, wow. Your parents? Like, is this a? Is it a mixed family? Are these the same parents of all seven kids?
Makalay 4:04
No same parents and no twins at all.
Scott Benner 4:07
Wow. Mikayla, is this a religious thing? There's a lot of No,
Makalay 4:12
it's not my parents just wanted a big family. They're like, the more the merrier. So well, they got one seven kids was best for them.
Scott Benner 4:19
What did your dad sleep like three hours a day and your mom has 14 part time jobs
Makalay 4:26
are older now. But yeah, yeah, I
Scott Benner 4:28
would imagine right. He was probably the guy who like came in the house at like, eight o'clock me like there's that guy that slaps mom on the butt. And then because I'm assuming I'm assuming Mikayla, he had to keep it hot to make seven kids. You know what I mean? Don't Don't think about it at all. It'll just make you upset. So you're you're seven when you're diagnosed. You're the youngest kid. Are some of your siblings. So old. They were out of the house by the time you got diabetes. He's,
Makalay 5:01
um, yes. In college. So I think when I was diagnosed there was five of us in the house.
Scott Benner 5:10
Wow. What did you mean? Who took care of you? Mainly?
Makalay 5:14
My mom and my dad, mostly my mom, because she was home with me. And our schools were pretty nearby. So she was always the one that coming to school and giving me shots before the nurses were allowed to do that. Or the school nurses, but mostly my mom. But I had a really good support system with like, my whole family. Yeah.
Scott Benner 5:32
Okay. Well, that's nice. Um, were you born in 2000?
Makalay 5:36
I was there you go with your math again? Oh, no, no, no,
Scott Benner 5:38
hold on. That's not don't give me credit for that. It's my my son was born in 2000. Really? Yeah. And it's the greatest thing because it's, I always know how old he is by the year. Yeah, you don't have to be convenient. It is insanely convenient, actually. So. And that's what made me think that so. So you were born in 2000. You were diagnosed in 2007. And still, the people at your school wouldn't help right away? Or how did that go?
Makalay 6:07
I think like right away since I was in second grade. My school was pretty small. It was only second and third grade in the school. And I think I was actually the only diabetic there might have been one other kid, but it was pretty new, I think to my school nurse. I mean, she was like, amazing. But at first it definitely was a lot of my mom coming in and working with the nurse and working out schedules. But eventually my nurse was giving me shot to just took like a little bit of an adjustment period.
Scott Benner 6:35
Okay, so your mom didn't do it forever. She just did it in the beginning. Yeah, just to start off, where you just literally just had needles at that point.
Makalay 6:45
Yes, I was. I was shot for seven years.
Scott Benner 6:48
Okay. Any any CGM or anything like that in those first seven years?
Makalay 6:53
I got my CGM. I got the g4 right when it came out. So I think that was I don't know, like 2013 or 2014.
Scott Benner 7:02
Okay. Was it really? Is that your first 120 13?
Makalay 7:07
I'm the first one I got was the Dexcom g4 Right when it came out. I think that was 2014. Okay. And right in my eighth grade, so I think it was like 2013 2014 ish.
Scott Benner 7:19
I see. And were you have you been using some sort of a CGM since then?
Makalay 7:23
Yeah, I've been sticking with the Dexcom. Okay. Alright. So
Scott Benner 7:27
you have to the G six at this point. I am Gotcha. All right. Okay, so what was it? I have a question, but I'm not sure what it is yet. Still learning about you. I feel like I need to know more thing about you before I can ask my question. So did you play sports in school?
Makalay 7:47
I did play sports. Basically, my whole life. What did you play? When I was younger, I think my parents signed me up for every single sport. There was like Community Soccer when I was younger, but and I was saying the other day, I think have played every sport besides basketball and volleyball. But I stuck with lacrosse, and then played that through like my childhood and in high school and then started field hockey in high school. So I played field hockey for four years lacrosse, like track in middle school. So I like running.
Scott Benner 8:22
Look, yeah, yeah, you're gonna have to if you're doing that stuff, lacrosse, lacrosse is the long tennis racket with a little event right? Is Yeah. Description. Field Hockey is the one where they make this stick to shorts. You have to bend over the whole time. Yep. I know what they're okay. Did you end up going to college?
Makalay 8:40
I did go to college. just graduated, right? I did. Yeah, I was. It's so nostalgic. Like, I was so excited to graduate. But I now home and I miss it so much. What was your major? I majored in linguistics for speech pathology.
Scott Benner 8:57
Wow, do you have any, any leads for jobs yet?
Makalay 9:02
Well, I have to go to grad school. So I decided to take this fall semester off and then start grad school in the winter. So I'm doing applications for that now. But unfortunately, I like can't get any job until I have my master's. But I've definitely been like doing shadowing and things like that, just to get experience. And I really love it. So I wanted to make sure I really, really loved it before I committed to go into grad school.
Scott Benner 9:28
That's that's incredibly you know, that's very smart. So is this a year or two years of grad school to get through?
Makalay 9:35
Two years.
Scott Benner 9:37
Okay. All right. So do you have do you have schools in mind and you just have to apply or are you just hoping one of them
Makalay 9:44
weighing it all out. I personally like the way I learned I really love the online schooling and like remote learning. So I'm looking into a lot of those programs but I'm definitely not like not considering in person because in person like class It's just nice as well. But it's just more finding a school that would start in the winter that is like the right fit for me. So I'm looking at a whole bunch of different schools just hopefully getting into
Scott Benner 10:11
Can you tell me more about why you prefer online versus in person.
Makalay 10:16
Um, I like online just because I like being able to like, go back and rewatch lectures and like, pause them and take notes. And in like, class, I did get like accommodations for that when I was in college. Like, I was able to like record lectures if I wanted to. But I think having like the zoom, and, like watching it, and then the recording of it going back and like going to special points, I was like, confused, I really liked that part of it. And I also now that I'm like, older, I like being able to, if it's like online, live wherever I want because like my friends are getting jobs now. So like, who don't have to go to grad school. So if they're like moving out into us, and like I could live with my friends if I wanted to, and I'm not really like, I down to wherever my university is. I said I would go
Scott Benner 11:02
to Yeah, that makes sense. Is your mom and dad, they're like, You got to get out of here? Or did they still have other kids living with them?
Makalay 11:11
I'm the only one right now. And they're totally fine with it. I think they love it. At least I hope so don't make it seem like they do. So if they're faking and doing a great job, but I think they actually do like me being here.
Scott Benner 11:22
I bet you they do call my son at home. And I think it's terrific. I really love it. It's actually interesting that Arden left for college last week. And it gives Cole the ability to be like the only child for a while like art and got to do that while Cole was in college. And now he's getting to do it. And you have a different I don't know like it's not a relationship, the relationships the same, but the your ability to spend time with people and, and it changes you know, because you're not splitting your time between a bunch of people like though, I'm going to tell you right now, Makayla, the thing I love the best about art not being here. She's such an indecisive eater. So she comes into the room and she's just like, I'm hungry. And it's very, like, I'm hungry. And I'm like, okay, cool. What do you want to I don't know, then. And then she lays in a pile like it's a like a 1950s like black and white movie and lays there. Like, we don't want to eat something. I don't know what I want. What do we have? And now and then you you stand in the kitchen going? Well, we have a you start listing everything like just open the refrigerator listed. I know. That doesn't sound right.
Makalay 12:38
Okay, thank you don't know what you want, but you want something but nothing sounds good.
Scott Benner 12:43
45 minutes later, she's just like, forget it. You're like, wait a minute, what?
Makalay 12:50
Aren't you still hungry?
Scott Benner 12:51
You're still I'm still hungry. We don't have anything. I been listing things for 20 minutes. It's not possible that you don't think we don't have anything you know. So I can't I'm so happy. She's not here because of that one thing other than that, I really miss her. And I can see when she Bolus is on Nightscout. And truth is, she's eating on a very like, like, she apparently can figure out what to eat when she's by herself, just not when I'm there. So anyway,
Makalay 13:20
as long as there's no influence, she can figure it out. She's like, Oh,
Scott Benner 13:25
I'll never understand it completely. Like, like, you know, she'll eventually eat something and be like, this isn't what I want. I don't know about you, Michaela. But I grew up in the 70s. It's a time a long time ago. And my mom would take a piece of paper and write Monday, Tuesday, Wednesday, Thursday, Friday, Saturday, Sunday, and then she'd write a food underneath of it that we could afford. Not even like, you know, anything people wanted. And she cooked that schedule every week. And then as I got older, she got lazy and stopped moving them around. So it was just like Thursday, we had chicken. And that was it. You don't I mean, she couldn't even like put chicken on Monday just to be exciting. So anyway, you're living? Nice. Yes, like, oh, it's interesting. You would like that, huh?
Makalay 14:17
I think so. But then also, like, last minute, I might see something and be like, ooh, actually, I don't think I want that. And then it's like, well, it's already right there. So I guess I have to eat it.
Scott Benner 14:26
There's a question about you getting an accommodation at college. Do you have a diagnose issue that you were able to point to? Or was it as easy as telling the college look, this just works better for them for me, can I do it like this?
Makalay 14:39
So I also have epilepsy. And I've had I think seven seizures and most of them I've been like standing and then I'll fall on hit my head. So I've had a lot of concussions. So I really like struggled with I called post concussions concussion syndrome. It's basically just like prolonged headache. and like, makes you like really tired and sometimes hard to focus. I also am like a little bit like add so.
Scott Benner 15:08
So that was enough to
Makalay 15:10
Yeah, they were really good about working with me and like, giving me my options and asking me what I wanted, which I thought was really nice instead of having like, one like uniform accommodations that everybody gets. So that was really nice. I also got like, the eating and class and things like that. And if my phone goes off for my Dexcom, obviously, like, professors don't really get mad about phones a lot. Like a lot of them don't. But like if my phone's going off, I liked my professors knowing that like, it wasn't my friend calling me like, my blood sugar's high, like my blood sugar's low, right? But yeah, it was really nice that my school was so flexible with me,
Scott Benner 15:47
it is, it's, um, art in school was incredible. They had a meeting in the summertime before she left. And the person just was like, hey, just explain my your life to me. And we talked, talked about it and, you know, said, look, there's, we know, there are things we can ask for here. But the truth is, they're not necessary. So we're not gonna we're not going to burden you with like, everything, we would make everything perfect. Just you know, is there a possibility because art in school is spread out over a city? Like, can we leave some supplies in a couple of buildings? Just so? Yeah, just so she doesn't get, you know, 20 minutes by bus away from where she's living, and suddenly have to run home? Like, you know, can we? Can we have a tiny refrigerator in her room? We got one of those little I don't know if you ever seen another like medicine, refrigerators? They look good. They would hold two cans of Coke maybe? And, yeah, keep her insulin there just in case like her roommates. Don't you don't I mean, like, we didn't want to put the in somewhere. Everybody was constantly moving around it. Yeah, exactly where we could save you. They were really great. So tell me a little bit about the other things that are going on with you. So epilepsy, is that a seizure disorder that you've had your whole life? Or did it develop over time,
Makalay 17:03
so is the seizure disorder, I got diagnosed with it and 2015. But by that, that year, I've already had two seizures before that. And it's actually really like the Dexcom. We were so grateful for it, because for a while, like I had two seizures, one, like, within the year I was diagnosed, and then another one in seventh grade. And when I went to the hospital, they my mom was saying, like, I don't think that this is diabetes related. And of course, like their first thing was like, Oh, her blood sugar was low. And then we would be like, Okay, well, I checked my blood sugar right after and it's perfect. And then we would usually get the response like, oh, during like that state, her body will naturally like, bring the blood sugar back up. And we always were like, a little bit weary about it. But I only had the two seizures by that point. And then the one in 2015. That summer, I had three, but the first one, I had my Dexcom. So we finally were like, here's the proof, like my blood sugar wasn't low, my blood sugar was fine. And then they did like more in depth testing and like EGS. And so like, I guess, like watching my brain activity and things like that. And then they found that it was irregular. And then I've been on medicine for it since 2015. But I've had a couple more because they're like some factors. Like if I'm like super tired, things like that. And like if I'm sick, and I guess the blood sugar could play a role in it. I guess if my blood sugar is like really low, I could have a seizure. But I think that like, that's a risk that a lot of people have. But yeah, so I've had I had my last one was in May of 2021. And it was because I was I had finals, and I was not being responsible as they should have been and not sleeping as much. So I was not I was pretty sleep deprived. So that's why I had that one. But it's been nice that every time I have one we're able to, like attribute it to, like why it happened. It's not like, what happened there. It's like, oh, she was super tired. That's why it happened. But why but yeah,
Scott Benner 19:06
let me just have questions. Sure. Okay, so from the time you had your first seizure, until somebody agreed that it wasn't diabetes related, how long was that?
Makalay 19:16
Um, I have one in 2008 and then another and 2013. So I guess there was two.
Scott Benner 19:26
So yeah, 2008 2013 then you finally got meds in 2015. So sometime between 2013 and 2015, you were able to explain to somebody this wasn't diabetes.
Makalay 19:38
So I had one in the spring of 2015. And then that's when we were like, look at my Dexcom my Dexcom is showing that my blood sugar was fine. And the doctors at that point were like, shocked. They're like this Dexcom is so cool. I'm like this Dexcom just saved my life because I want to be on medication. Yes.
Scott Benner 19:56
Seven years. Mikayla seven years for you. To be able to talk somebody into it, and you're only having them, I don't want to say only but they're pretty, like 2008 2013. It's five years, and then it takes two more years to have another one. Then you get the medication. Do you think the medication is helping? Because it was, was it six years till your next one and 2021?
Makalay 20:18
I think it was helping. So I had two more in the summer of 2015. And that was because one of the medications I'm on, it's you have to work up in it in like small doses. So I wasn't on they said, like a therapeutic level yet. So I just I couldn't have I would break out in like a rash or something, if I took too much of it. So I was still working up on the medication. So that's why I had two more than they actually were the same day. And then Christmas of 2017. I had another one and then may 2021.
Scott Benner 20:54
So I want to except I want to ask you a question. That's kind of fresh in my mind. Because while we're recording this in September, you're this won't come out for a while. But tomorrow, believe it or not, the next episode of the podcast with Arden is coming out. Oh, really? That's so sweet. And in in that episode, we sit down the night before she goes to college, and we just record late at night before we go. And I really thought we were going to just talk about management. Like I wanted to go over all the management stuff with her one more time, you know, and I thought, Oh, it'll be interesting for people to hear the things that I've talked to her about. And of course, Arden's personality just does not allow for that. She doesn't want to hear about it that way. And, and in two seconds, we direct the conversation to Rails. And she brings up that she had a seizure after her senior prom. Oh, really? Yeah. But it was it was blood sugar related. And so she goes to she explains the whole thing, you know how it happened and everything we tell the whole story. But, you know, she was talking about, she was talking about it felt like she was jumping. And then she explained what that was. And she said that there were other people in the room. So when hurt when she would, I guess her brain took a picture of what she was seeing, like, for instance, her friend would be across the room in the corner. But the next time she was aware of anything, the friend was 10 or 12 feet closer to her. And she said it. And she talked about it jumping. And I was just wondering what a seizure feels like for you.
Makalay 22:30
So mine, I actually like don't remember anything I remember like the moment up to it and then waking up and it's usually like paramedics that's like the first like vision or whatever I have when I wake up, but it's crazy because I've had seizures. Usually there's other people in the room. Besides one of them. I was like upstairs and my brother and my mom heard it. But I the one I had on Christmas, my whole family was in the room like my siblings. And they said that like I remember putting I was under blanket. And then they said like once I was under the blanket, that's when it happened. So it's like kind of crazy to think about up to the moment and then it's basically like I blacked out and then wake up.
Scott Benner 23:11
And do you have any deficits when you wake up? Or are you just like back on, you're like, Hey, I'm here.
Makalay 23:17
Um, um, usually it takes me a little bit to like, figure out what happened. There's this I try to be a very nice person. There's been a couple of times, I was a little bit like, like, I remember this is kind of funny, but my driveway goes in front of my house. So I had the seizure. I woke up and it was night. So I saw all the paramedics like ambulances, the cops, like all their flashing lights. And my first thing was like, Are you going to turn those off? Like, you know, you can have another seizure right now. And I think that's like the meanest thing I've ever said when I woke up. But other than that, it's usually just me like, trying to figure out what happened. And then I don't usually want to go to the hospital when I'm like, like that. So they're usually saying like, you need to go to the hospital and I'm like, trying to bargain with them. Like no, guys, it's fine. Like, don't worry, I'm fine. And everyone's like, you're obviously not fine, but I'm just tired afterwards for like a day or two. But I usually bounce back pretty quick.
Scott Benner 24:07
That's your love. That's as mean as you've gotten
Makalay 24:12
with the paramedics I just like felt that after I said that, but I hope that they like forgot that happened. And if they remember they like she just had a seizure. She doesn't know what's going on. But it's funny because I didn't know if that actually happened or not like I asked my mom like I think it was like a week later and I was like wait, did I say this? Did I did I dream that that happened? She's like no, you actually said that. And I felt terrible. I was like I want to go to the like firehouse where the paramedics are and like apologizing my mom's like, I don't even think they're gonna remember you said that but
Scott Benner 24:41
I haven't asked this in a while but why are you so nice?
Makalay 24:45
I just try to be a nice person.
Scott Benner 24:49
Of course, I think that's a beautiful goal. I'm not saying I'm just why is there like pressure to be nice.
Makalay 24:57
No, I just tried to be like I think that when I think about like, I'm being like diabetic and I also have like lupus and epilepsy and like everything going on, I try to be like a happy and nice person. And I think like other people, like you never know what people are going through. And like, if you looked at me, you probably wouldn't know maybe if you saw like my Dexcom or my pump, you would suspect diabetes, but you wouldn't under like, you wouldn't see that I have everything else going on. So I like try to think like, oh, other people are going through things. So why not be nice? You never know what people are going through, like at home or what they have going on. So just try to like, think of other people and be nice to them.
Scott Benner 25:35
That's lovely. Are you are you using a tube pump now?
Makalay 25:38
I am I'm using the T slim. Okay.
Scott Benner 25:41
So I'm stalking I'm trying to figure out who you are on Facebook. I think I've got you. So I
Makalay 25:46
think it's under K.
Scott Benner 25:48
We don't say your name. Kava.
Makalay 25:50
Oh, I'm sorry.
Scott Benner 25:50
I'm sorry. Just teasing. Hopefully. Okay. So, you know where I live? Right. Um, I don't know, in New Jersey and central New Jersey. So you went? You went? Dress? No, no. Mikayla, do you think I was like, do you know my exact address? But you went to college near me, right? Yes. Okay. All right. So I have the right person. So So okay, you look delightful. Like you look, your face matches the, the attitude that you have. It's very lovely. Okay, so you have no recollection of the seizures? Can you feel them coming on?
Makalay 26:34
I can't, unfortunately, a lot of people get like that aura, but I don't. Wow.
Scott Benner 26:39
So I guess what I want to talk to you about then, in the moment, before we get to the diabetes and the other stuff you mentioned. What's it like, psychologically to think you could just shut off?
Makalay 26:54
Um, it's definitely, like, gives me a lot of anxiety. But it's usually I get like that anxiety like after I had a seizure, because I think like, that just happened, like for like, a month or so after I'm like, a little bit like, apprehensive, but I tried to just like, say, like, I'm taking my medicine, everything's gonna be fine. And if something happens, like, I know, I have people around me that will help me and I know that I'll be okay. Because I've been okay. Every time I've had another one. I just hope I don't fall and hit my head because I had six concussions. So I'm like, Please, no more concussions. I guess that's one of my worries. But I tried to just like, like, have faith in like my medicine and know that I'm, I'm going to be okay, just kind of, like try to be positive affirmations. Like, that's never going to happen again. Like, I'm going to be good. Like, don't worry about it. But I mean, there definitely are times when I'm like, maybe I didn't sleep enough. Like, I should be a little worried then. But I really tried to just be like, positive about it and not, like, think of it in like negative way. But I do like it does make me a little nervous.
Scott Benner 27:59
Well, I mean, it's obvious that you're keeping a good attitude, but I mean, do you drive?
Makalay 28:05
I do drive? Yeah, I've never gotten my license taken away, which was good. I was always nervous about that.
Scott Benner 28:12
But you wouldn't if I said, You, Makayla, you should learn how to fly a plane, you'd be like, that's definitely a bad idea. Yeah, that's definitely do you do do you wear identification that says you have because if you have diabetes, and a seizure disorder, and you pass out, they're gonna give you something for the diabetes no matter what I would imagine. Mm hmm. So do you have like identification?
Makalay 28:38
Yeah, I wear my Apple watch. And on my Apple watch, I have like a little it's like a sleeve almost that goes on the band. And it says like type one diabetes, it says, Pepsi and endo insulin dependent. So I try to wear that every day.
Scott Benner 28:53
I'm trying to imagine myself as a as a paramedic showing up and I'm like, oh, insulin, diabetes, this kit await epilepsy. I don't know what to do now. Now. I guess they check your face more to it. Yeah. Right. Does this make dating difficult or no?
Makalay 29:11
Um, no, just because like I said, like, I feel like, this is my I don't know, you can't really see what's going on right off the bat. So it's not usually something like I talk about right away. But no, it hasn't.
Scott Benner 29:26
Okay. What about the other stuff, which you said, I'm sorry, I lost track because this is kind of fascinating, but fascinating to me, Miguel. Not to you. You're like yeah, no, it sucks Scott. But it's fascinating for this lupus.
Makalay 29:45
How do you do this?
Scott Benner 29:47
How do they diagnose lupus I thought is lupus a, like a diagnosis of exclusion? Do they just tell you everything you don't have or is there actually a way they can tell you? You have lupus.
Makalay 29:57
So there's like this criteria. Korea have, I'm not sure like the amount I would want to say like 13 to 15 like symptoms. And I think if you have like five or six of them, then you are considered like a Lupus diagnosis, obviously with like, blood work that's consistent with it as well. And like other symptoms, like I know, like one of them is like a blood a butterfly rash, like, that's one of the symptoms that is like a, like a marker, I guess, for lupus. But the way I got diagnosed was actually like, crazy. I started having like allergic reactions to tree nuts in January 2021. And it was like crazy, like, my body would break out in hives, I'd like feel like my throat was like scratchy and was like scary. So I, I cut the train out out, I stopped eating them and went to an allergist and it was during COVID. So she only did zoom. So I was telling her over zoom with my mom like this is what happens and she's like, Okay, you definitely have a trainer allergy like I'm prescribing you an epi pen, everything. But then she's like, but I want to do bloodwork, like let's see if there's anything else you're allergic to. So she calls me and she's like, weird because you're not showing any sensitivities at all to any nuts at all. Like your your bloodwork looks good. So I'm going to test your blood for autoimmune things. So I'm like, Great, okay, another autoimmune thing, but I'm like, okay, like, whatever. And yeah, I'm like, awesome, okay. But she calls his back and she's, I guess, like, the, it's like an AMA marker or something like that was positive. And she's like, this is a, this test is usually like tells you you have lupus, and she's like, I'm an allergist. So I can't diagnose you with that. But I like strongly recommend you go to a rheumatologist because like this, this is like when this is positive, like you have lupus. So I'm like, awesome. Find a rheumatologist. And she says I have it. But I've been like really good with not having symptoms. Like, one of the symptoms is I like your joints and hurt and like body aches. And by stiffness, which I feel like sometimes, but it goes away. And it's like manageable. So I'm not on any medication for that yet. I'm just hoping I never will have to be but it's just a pill. So if I have to go on it, it's not the end of the world. But I'm trying my best to not have to do that. Because it I guess like with lupus it can like flare and I haven't had a flare in a while. So so far so good with that, but that's like a fairly new diagnosis. So
Scott Benner 32:40
are you allowed to have nuts now?
Makalay 32:42
Yeah, I am. I was so upset because I like had to get rid of peanut butter. I'm like, I love peanut butter. And I can have it now. It was really a sad time, mostly because I was like, I missed so many foods. I didn't realize how many like peanuts and tree nuts.
Scott Benner 32:55
I was gonna say because I was reading a list of tree nuts while you were explaining this. Like, I wouldn't care if they told me I couldn't eat any of these things. So no,
Makalay 33:02
I was so upset.
Scott Benner 33:04
Well, and you're so sweet. I didn't make any kind of joke about nuts in your mouth, because I just don't know how to do it. Because you're so nice. Three different versions of it teed up while you were talking. I was like, Nah, can't do it. What am I gonna do with this girl? She's so sweet. I mean, you know, you were worried about offending the paramedics when you were like, hey, please turn off those flashy lights.
Makalay 33:32
I still feel so bad about that. I don't think I'll ever get over it.
Scott Benner 33:36
When you came on, tell them. As soon as you started talking like a half hour ago. I actually double checked with you about your age because I thought because of your voice. Like maybe I didn't. I thought maybe you were younger than I thought. So.
Makalay 33:48
I'm like lying about my age. No, it'd
Scott Benner 33:50
be on a diabetes podcast. Yeah. Gotcha. What? Oh my gosh, you're such a rebel. Okay, so the lupus diagnosis is from the the AMA response that they got with the testing, but beyond some like, uncomfortableness in your joints. You don't have anything to say like that. That you noticed. Frequently
Makalay 34:21
it's fine. It was weird because the allergic reactions like stopped so they said that that was part of it because like my feet might like my body a break out in hives, but like I would have a rash like that was like kind of looked like a butterfly rash. So they were saying like that could be part of it. That was one of like symptoms, but my bloodwork was really consistent with it. So they're like yeah, sorry, you have it. Okay. But other than that, I don't really feel any symptom. They definitely get like tired sometimes, but I'm like I have so much going on. I don't know what this is from. I could just be tired. But I was so far so good, which I'm really happy
Scott Benner 34:58
about for every thyroid levels check.
Makalay 35:01
Um, I have and they've been fine but a lot of my sisters and my mom have like thyroid issues. I don't know if it's hypo or hyperthyroidism. Okay.
Scott Benner 35:11
Do you know what the medicine is they take the word Synthroid.
Makalay 35:17
Yeah, it's that so hypo.
Scott Benner 35:19
And do you know if there's our auto immune Hashimotos or just hypothyroidism?
Makalay 35:26
Um, I know my one sister has Hashimotos I think my mom and my other sister are just like him. I don't think they have the Hashimotos.
Scott Benner 35:39
So when you say your levels are okay, do you know what they were?
Makalay 35:44
Um, no. I wish I did. I wish I had that. That's okay. But I did get tested for celiac. And they said it was like borderline like the level one was one away from having celiac after not eating gluten for three months. So it's never confirmed, but they're like, basically you probably do but I just don't list that. I'm like, I can't add anything else to this list. But I eat gluten free I just say because it's an intolerance, but I probably have celiac. I'm like too scared to get that level of tested again.
Scott Benner 36:27
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Makalay 38:13
Exactly. I promise I'm responsible like medically I'm very responsible. But that is just something I'm like. It's fine.
Scott Benner 38:21
But who are you promising right now? Me are the people listening? Everyone
Are you guys Catholic?
Makalay 38:35
We are
Scott Benner 38:36
Yeah, I can hear the guilt in your voice sometimes. It's okay. Jesus is alright with what you're doing. Michaela. Don't worry about it. Let me let me let you off the hook. Okay.
Makalay 38:45
I needed that. Thank you.
Scott Benner 38:47
Okay. Yeah. Do you like Do you have any of that? Like pressure?
Makalay 38:52
I'm not really we definitely like our Catholic but I'm not like going to church every Sunday, but I do have like, I guess like Catholic core like
Scott Benner 39:05
stuff that's in your head since childhood? Yeah,
Makalay 39:08
exactly. But it's I've never felt like any pressure from like religion to do anything, right? Like diapers, rot or anything.
Scott Benner 39:17
Like, what's the level of it though, when you're doing something wrong? And I'm making quotes because I can't imagine what you do. That's wrong. But when that's happening, do you picture Jesus on a cross? And you're like, oh, no, he died for my sins. I have to put this candy back. I can't shoplift or like, what's your level of pressure?
Makalay 39:33
No, I don't like think of the cross and Jesus or do I just think of like, okay, I guess I could like, I guess I don't have to do this. Like, this probably isn't the best option. I mean, I definitely like making mistakes all the time. But I try not to like, if I'm doing something and I like the I have. I've like very strongly, like I have like a guilty conscience. Like if I'm guilty about something like I'm not gonna let it down. So I just like really try to be truthful. For, I guess my own sake. So growing up, it's always like honesty's the best policy. So I have that nailed in my head as well.
Scott Benner 40:07
Nailed, no pun, right? Let me let me ask you a question. Okay. There's no consequences, right? No one's ever gonna know. And it's not going to matter. It's not going to hurt anything. What's one thing you would do that you would never do otherwise? Oh,
Makalay 40:25
I don't know. Um, maybe like somehow get free gas like with the gas prices these days? Like probably like get free gas somewhere. I don't know. I don't know. I can't think of anything off top my head. I'm gonna think of something in like an hour and be like, Man, I should have said that.
Scott Benner 40:44
McHale I gotta tell you if it wasn't, if it wasn't for the risk that I think the two of you would produce a super auto immune bomb. If you had a baby, I would introduce you to my son because that's just such a nice. I thought you were gonna be like, heroin. Maybe you know, like, No. No. Okay. Maybe I'd get cheaper gas. Yeah. Even free.
Makalay 41:09
I'm telling you in an hour, I'm gonna think of something and be like, that would have been so much better.
Scott Benner 41:15
Not like, I'd like to kill a person to see the life train out of their face. Nothing like that at all. Just just, I'd like cheaper gas, please. And if the gas prices were lower, I Where would you even go on with that idea. I have no idea. I'd like 15% off on like
Makalay 41:34
I know guys. It's so expensive. And my car takes so much gas. I'm like, Oh my goodness. Can we stop with this? So I guess it would just be completely free gas.
Scott Benner 41:41
Are your brothers and sisters this nice? Or is this? Are you an outlier?
Makalay 41:45
Um, you know, sibling wise, you know, there's always like sibling, like, like rivalries maybe, but I think we're all pretty nice.
Scott Benner 41:54
Okay. Background. So now you're Catholic. You're from the East Coast. Are you? Irish? Are you what's your background?
Makalay 42:03
A very Irish. So my dad is 100% Irish. I guess my grandmother came to America when she was 13. Like, right off the boat. So from Ireland. So she's my dad's very Irish. And my mom is very Irish, too. I think she has some maybe German or French in there, too. I think it's French, German and Irish. But we're very Irish family. Like all blue eyes. Blonde hair type thing? Yeah. My sisters have brown hair. But we're all like, we look Irish, I guess. Well, I
Scott Benner 42:39
didn't ask you just so I could call the episode very Irish, which I'm very close to doing. But I asked because the prevalence that I find with people from whose descendants come from that part of the world and autoimmune stuff. Really? Yeah, no kidding. Like, and there's other clusters like that Minnesota area from the Nordic there's like a lot of Nordic people of Nordic descent, like in Minnesota, Wisconsin. And it's, I don't know, there's something about that. There just is so interesting. I've
Makalay 43:10
never heard of that.
Scott Benner 43:12
Now. That's how I got to so like for everybody who's listening who's like, oh my god, Scott's amazing. He heard Giltner voice and thought she was Catholic. Not really, really what I figured out was first of all, Michela is like I found a picture of her. You know, you're a poster child for White. You don't I mean, so. Yeah. You're pretty white. And I was thrown off originally. Because your name I thought maybe she's Hawaiian. Like, but no. Oh, really? All right. And then then I was like, Okay, it's your last name with your first name that made me think that and so then I started realizing a lot of brothers and sisters, that's Catholic. Then super white, probably Irish. And then that's where I'm getting and then you said all your your brothers and a lot of your sisters have thyroid issues. And then you started talking about celiac. And I was like, This is it like this is? This is because of where your ancestors are from, in my opinion, that's the case. But please, I just didn't want people to think that I was omniscient. You know what I mean? It's just putting the pieces together. That's all talking about the rest of your family for a little bit. So you said the lot of the girls have thyroid stuff. Is there anything else? Anybody else? poop a lot after they eat or anything?
Makalay 44:25
We I'm trying to think um I don't know. I just feel like we have a lot of autoimmune issues going on. My sister is also celiac. Um, my other sister has a few like chronic conditions. Um, what else like my also like my mom, relatives like my aunt's also have like, my aunt is diabetic as well type one. So she is type one. Yes. And then she has another autoimmune condition as well. But Yeah, I just feel like we have a lot going on now. I'm like blinking.
Scott Benner 45:04
Okay, how many freckles? A lot. Yeah, in the
Makalay 45:07
summer. And this summer a lot.
Scott Benner 45:11
Lots of freckles. Yeah, yeah. More freckles, and you have autoimmune, that's for sure. But
Makalay 45:17
let's keep it that way.
Scott Benner 45:18
How about your dad? Does your dad have anything going on?
Makalay 45:21
Um, my dad, he has more like heart. Like conditions like that, but not autoimmune.
Scott Benner 45:30
What are we learning here? Mikayla? White people are ruining the world. Isn't that right?
Makalay 45:34
Yeah. Me, maybe it's just me. Just you. I'm kidding. But yeah,
Scott Benner 45:42
it just, it's fascinating, isn't it like, like, you know, every group of people have something that sometimes the other group doesn't get as frequently. And I'm just telling you like, after, I mean, I don't even know how many people I've talked to now, like, you seriously are in the hundreds for me, as far as my interviews go. So it's just there's something about it, like the type one diabetes and other autoimmune issues coming out of that part of Europe? I just, it's crazy now, is it? Is it people who have left Europe? And are here? Like, is it something about the mix of, I don't know, the wiring, and then the lifestyle or the geography? Like, I wonder, I wonder if I get to find more people in Ireland like, like, because from, from the conversations I'm having, it makes it feel like 80% of the people walking around Ireland must have an autoimmune issue.
Makalay 46:38
Yeah. You know, my parents just got back from Ireland. We have family that lives there. And we try to visit them like pretty frequently, but I actually reach out and ask them what's going on?
Scott Benner 46:48
I'd honestly love to know.
Makalay 46:51
I'll reach out to them. I don't I have to use like WhatsApp or something like that. But I'll reach out I have my dad ask them
Scott Benner 46:58
I know they're not allowed to use the phone over there. I don't I don't even
Makalay 47:01
know if they like have iPhones
Scott Benner 47:03
might well, they have they have iPhones. But it's very expensive for them to call over here. Yeah. Like, my daughter's friend just went to London for college. So cool. And she's like, I'm gonna show you guys like guys all gotta get WhatsApp. And we're like, I don't know, not doing I don't want to talk to you that badly. You don't I mean to have another app like Kayla. Seems like a lot.
Makalay 47:29
Does.
Scott Benner 47:31
How did you? You went to a really big university, but a lot of people. I don't want to tell anybody where you went. But, but I've always wondered how that's possible. Because every one of your classes is just probably lecture, right? You and hundreds of people in the lecture hall.
Makalay 47:49
So the class not like the classes, the higher level classes, those were usually like, smaller, okay, but a lot of like my Zoom classes, I minored in psychology, and I noticed, like, all the psychology classes were like, huge, huge lectures. But those were mostly like online. But it's actually funny, because, um, I ran I like, did random for my last or my two years at the junior and senior year, and my roommate also was diabetic. And we had no idea until I got there and met her. And I was like, Guys, I have to keep my insulin in the fridge like, hope you guys are good with that. And then my roommate was like, Oh, my goodness, I'm diabetic too. And I was like, Wow, that's crazy. That is insane, actually. Right. And she's like, my best one of my best friends now. So that's worked out.
Scott Benner 48:37
That's really, I mean, I want to say the odds of that are crazy, but maybe they're not. I don't know. I know. She does. I think the odds went way down. I think what we should say now is of course, she had diabetes. So
Makalay 48:57
everyone who's Irish should just get some test.
Scott Benner 49:00
Listen, I don't it's all just, you know, I don't know, circumstantial evidence as far as I'm concerned. Right? Like, it's just me just talking to people, but I don't know how many times somebody has to say something before you go. That's can't be a coincidence. I mean, honestly, the amount of people who come on who have a family member with some sort of bipolar disorder is is a lot like it's just a lot like think about it. Do you have a bipolar uncle summer? Probably kill us like
Makalay 49:34
family so big. It's like probably somewhere in the line. Yeah,
Scott Benner 49:38
no, no, it's really it's really something else. So okay, um, so you manage pretty slim are using control IQ?
Makalay 49:44
I am How do you like it? I love it. I noticed like my agencies have always been like, pretty good. Right after control IQ like my agency got even better and it's been like pretty consistent. It's so nice. Especially like I've It's like crazy to think that I never had low IQ like what was I? How did I do this without it, but I love it.
Scott Benner 50:05
No, it's excellent. How long you've been using it?
Makalay 50:10
Yeah, since it came out.
Scott Benner 50:11
Were you using Basal IQ before that?
Makalay 50:15
I don't think so. Okay. I wasn't I just went right into the control IQ.
Scott Benner 50:20
Do you listen to the podcast? How did you? How did you end up being on the podcast?
Makalay 50:25
Oh, my sister listened. I do listen. You're my sister. My sister's a big fan. I am too, obviously. But,
Scott Benner 50:32
Mikayla, this is super interesting. So your sister found a diabetes podcast to understand your diabetes better? Or because she thought there's no way one of my kids isn't going to have diabetes. So I got to figure
Makalay 50:43
her son is diabetics and my nephew is Oh,
Scott Benner 50:47
no. So it's you, your nephew, your aunt? Are there more? Not that I know of, you know of well, a second ago, there was only two or three.
Makalay 50:59
No, I mean, like, like relatives like I'm trying to think of like my aunts and my uncles and my cousins. I think it's just us three.
Scott Benner 51:06
Okay. Oh, okay. So your sister so your sister's like, I don't want to go on the podcast, but I'm gonna do it. Or do you think you'd
Makalay 51:14
love it? It's, I think just like the amount of like conditions I have, like, makes it interesting. But I think my sister would love it. She would rock it on your
Scott Benner 51:23
Well, first of all, she should come on if she wants to. But But don't you? Isn't that crazy? Like in what other walk of life? Would you say? You know, what made me a good guest is because I have a number of conditions. I sometimes wonder if people who are like, Oh, I just have diabetes, think I can't come on the show. I don't have enough wrong with me to like to be on this show. Because that's not the case.
Makalay 51:45
Anyone listening? Do not think that everybody is interesting and special in there. I just haven't have a lot going on.
Scott Benner 51:51
I'm gonna say this right now, if you're a lady who can't put nuts in their mouth, come on the show. We'll talk about it. You know a man. Yeah. I want to hear about all that stuff. Like, like, like allergies. And I'm fascinated by all of it. Like, the things that the things that people, you know, like, My son said to me is like, you can't just do a podcast forever about diabetes. I was like, Man, I don't even know if it's still about diabetes. To be perfectly honest with you. I was like, it's,
Makalay 52:22
you know, I think that's great, though.
Scott Benner 52:24
Yeah, there's a lot like talk about Yeah, we're learning more about people and things that they're running into. And for me, that other people listening? Like, I bet you, countless people will find a ton of likeness in the statement you made about your celiac, where you said like, I take care of it. I just don't want to know I have it.
Makalay 52:46
Yeah, sometimes, like, ignorance is bliss. Like I just try to think like, Okay, I'm taking care of it. It's all good. Don't worry about it.
Scott Benner 52:54
Because psychologically, I mean, how many more things can you know that you have? Like, isn't it some, isn't it? Listen, it's terrific that medicine can help people. But what's better living in 1970 Telling people like Oh, my wrist get tight, or walking around saying, I think I have lupus. You're me like, not that not that. No, not knowing is good. But for some of these things, that back then there was no medication for that. Like if your grandmother had her joints hurt. That was it. You know what I mean? Like, they weren't gonna do anything for ya. So like, maybe psychologically, it's comforting not to have to think I have four things wrong with me because it feels like that, right? Like, it feels like, yeah, there's something wrong. Sure. I'm still fascinated about the seizure disorder, though. Like, I don't know how you're keeping a good attitude. I don't know. Like, because so I mentioned earlier, excuse me that Arden had a seizure from a low blood sugar. And there's the episode you can go listen, hold on a second kill. I'll tell people what episode it is. You would think I would know, but you know, I'm about the I'm the last person who understands everything about the bites gonna be 757. It's called Arden is back. Because I keep thinking Arden's going to be on a lot. And I don't want to run out of art in titles. So anyway, she wanted to call it what did she want to call it? I can't think of what she wanted to call it. It was something funny, but inappropriate. I was like, we're just gonna call it Arden is back. So. But she talked about two very important things. Like if you don't go listen to the episode, here's the takeaway from it, that after Arden had a seizure, and you can go listen to all the myriad of variables that led to it happening, but that for a couple days afterwards, she couldn't even sleep by herself. Like she was almost 18. And she slept in bed with me and my wife for a couple of nights. And that's not something that would have been normal at all. And then one day, she said, I just thought, well, this is silly. And I And she's like, I just went back to my bed, but she was having trouble sleeping. If she wasn't, I think the way she put in the episode is like when you were there, I knew you'd take care of it if there was a problem, and I couldn't get the sleep otherwise, but then she got past that. And then she began to just Bolus normally again for her food like she didn't. And I've heard too many people on the podcast tell me, especially adults living alone. Like, look, I've had a couple seizures, so I leave my blood sugar higher now. And it's not that I don't understand the idea. But I was proud of Arden for just being like, No, I know why this happened. It was a really odd set of circumstances. And I'm not going to not take care of myself, because this happened one time, but you're in a different situation. Yours just happens like, like somebody bumped the light switch. So I'm fascinated that you're so I don't know, not mad. Where you're hiding it.
Makalay 55:57
I mean, I mean, sometimes I do get like a little bit frustrated about it, just because I'm like, annoyed that, like, I'm, this is gonna sound bad. But like, I sometimes get annoyed that like, I have to deal with this stuff. And like most other people don't like, obviously, like type one diabetes, plenty of people deal with epilepsy, plenty people deal with, like, everything not to like, I don't know, I just get on with it. Sometimes I'm like, I wish I didn't have to deal with the epilepsy part of it. But then like, when I start to think like that, I'm like, I have to be positive about this, or I'm gonna like dwell on it. And, like, think about it negatively. But it's funny you say not funny, sorry. But that's not the right word, but that she was sleeping with you because you're sleeping about with you. But like my parents, like, I remember after my last seizure in May, I woke up and my dad was sitting in my room and he my dad drinks his coffee, like so loudly and it like drives me insane. I remember I woke up my dad was like drinking his coffee so loud in my room, like, just making sure like, I was okay, because a lot of my seizures happened in the morning. And I was like, You need to get out like, you need to get out right now.
Scott Benner 57:02
What's your dad doing? Was your dad doing what I do with my oldest dog in the morning? Like I stare at it? And I'm like, do I see the chest moving at all?
Makalay 57:11
Like, is she good? Nothing's gonna happen. Right?
Scott Benner 57:15
Well, let me go backwards a little bit, because you just said something. And I'm not your parents. Mikayla. But you said this is going to sound bad. And then you said, sometimes I don't. I'm mad that other people don't have to deal with this. That doesn't sound bad. Because that sounds rather human. Yeah, I mean, it's okay to be it. So I think it's okay to be disappointed, or are angry or, you know, feel lost. But I also think that the way you handle it is admirable. Yeah, no, seriously, because you could easily just devolve into, like, black eyeliner, and, you know, Whippets pretty easily. And clearly, you clearly haven't done that you wouldn't even take completely free gas when I gave you a magic wand. So people work hard to get that oil out of the ground, and they deserve to be compensated to Scott. But seriously, like, I'm not worried for you that you that you preface it by saying this is going to sound bad. But I would I would offer to you that you shouldn't. You shouldn't think that way. You shouldn't you shouldn't you should feel the way you feel. And not worry about how it sounds to other people. Yeah, that makes sense. Because you're gonna don't apologize to me for it. Because you're you were very close to apologize.
Makalay 58:45
I was gonna because
Scott Benner 58:48
I know you Michaela, not you but people like you. And you know. So, alright, I want you to what do I want you to do? I don't want you to break a law. And I don't want you to do heroin. That was an over the top example. But you should do one thing that you think of is that you want to do that you wouldn't normally do. Just don't turn into like, seriously, don't do math or something like you and me like something lower than that. But, but I think you should do something that feels freeing.
Makalay 59:19
And then I'll be like, Scott told me to do it. Yeah. When
Scott Benner 59:21
you're sitting in jail, tell the people I was on a podcast and this guy said I should let go a little. But yeah, but seriously, though, like, just a little bit.
Makalay 59:30
Yeah. And I do like with my friends and stuff, but I like really try to be like, I don't know.
Scott Benner 59:37
So here's what I'm gonna say. I think you are a good person. I don't think I think you need to try to be a good person. Ah, do you see the difference?
Makalay 59:46
I do. Yeah.
Scott Benner 59:48
Why are you thanking me? It's just nice to not do you not know you're a good person.
Makalay 59:55
No, I do. I do know. Okay, good.
Scott Benner 59:58
Yeah. So it's Do you see the distinction though, between trying to be good and actually just being good? Like for instance, I'm going to give you an example here that I should not give you. Okay, it's fine, but it's got a bit listen to the podcast. It's an interesting people are gonna stop listening. So let's be honest. Okay. This morning, Arden's in her second full week of college, I get a text from her that said, something like, bra. Does that be are you Ah, there's a kid in my class losing his mind. And she starts telling me the kid transferred in you know, it's only a weekend, I guess the kid dropped the class and pick this class on. He gets there and realizes that he's a, an assignment behind already. And literally just starts walking around the room going, Oh, God, Oh, God. Oh, god, Oh, God. And apologizing to the teacher, an artist like he's having a full on panic attack right now. And, you know, just absolutely terrible, right? Like anxiety. Not funny. Like, none of it's, it's terrible, right. So I know, I respond back and I say, I feel bad for this kid. Like, obviously, it's a tortured way to have to live. This is not a big deal. Like this is a design class. Like Mikayla for clarity. The assignment that the kid missed is drawing lines in succession that get dimmer and dimmer and dimmer, just to teach you pressure with a pencil, right? This is done it like the back of the class. It's accomplishable to fix this problem, right? And instead, my, my daughter says, now he's saying, I'm, I wish I could have I'm gonna try to find the quote for you. Because I found it very sad, because this is not. I mean, obviously, this is not a big deal, right? It is to him, but it isn't in the grand scheme of things. This is a quote, I'm supposed to relax when everything is falling apart around me. So in this kid's mind, this scenario, is everything falling apart around him. And I have all the compassion in the world for that. I think anybody listening knows that. I don't think this is funny that I think it's terrible. And I hope the kid gets help. As a matter of fact, I say to her, like, hey, you know, with somebody helping him. He needs to get to a counselor is the professor doing something I say all the right stuff. And then when I realized it's getting tense in the room, and Arden needs a little comic relief. I said, you know, in 1850, his parents would have helped him have a swimming accident. But I'm still a good person, Mikayla. I think I think for the people listening, I am undeniably a good person to present but I still said 150 years ago, someone would have drowned that kid in the river. And so. So you don't I'm saying, and I don't think there's I don't think you should equivocate about that. I don't think I'm a bad person, because I made an obviously over the top joke to my daughter trying to help her relax in a situation where she was like, Hey, what the hell's going on? You don't I mean, like, she's not texting me, like, hey, there's a loopy kid in here. She's worried about what's going on for herself and, and everything. You know. I don't think that makes me a bad person. If somebody's listening and thinks that makes me a bad person. And there's not much I can do about that. But yeah, like, it's, I know, I am a decent person. And yeah, you are,
Makalay 1:03:30
you're a good person.
Scott Benner 1:03:31
I don't wonder I don't walk around wondering if I am or not like, I never would have mentioned this. It had just not happened this morning. And you and I weren't having this conversation. But do you do things that later you judge?
Makalay 1:03:45
Um, no, I try not to. I try to just kind of like, be who I am. And like, take it as it is. Like, if you like me, that's great. But if you don't, that's okay, too.
Scott Benner 1:03:57
It's so funny. It's interesting, the way you attack the question, because I don't think of this question as something you would apply to how someone else feels about you. Uh huh. Like, I'm trying to get through to you. You're not listening to me. I'm trying to get through to you that I know that what I texted Arden some people would find offensive that they would attach that thought to a bad person. But I don't. I know I'm a good person. So I wouldn't even bother considering it.
Makalay 1:04:27
No, but yes, also because you like show compassion first. Like you're like, Okay, this is what might be going on. Like, I feel bad for him. But then it's like, but it's gonna be okay. So it's fine to just throw a joke in there.
Scott Benner 1:04:37
Yeah, I didn't just feel bad for him. I was giving like real like, hey, is this happening? Is this happening? Like somebody should be doing this like, meanwhile, my daughter's probably like, I don't want to be involved in this. It's my second day of college. I have my own stress, you know? Yeah. But still, there was some levity needed, and was that much levity needed? I don't know what to tell you. That's the joke my brain came up with. So I'm going Okay, but I'm saying that when I asked you the same a similar question, you're like, Well, you think of it from other people's perspective, but I'm asking from your perspective. You're a good person, right? Yeah. You think off color thing sometimes? Yeah,
Makalay 1:05:15
I think everybody does. Yeah,
Scott Benner 1:05:17
I hope they do. Yeah, I really do. I genuinely hope they do. I think it's interesting, because you've grown up right through. I think happened Mikayla, like, the eye. For five seconds, the idea of being woke was this nice thing, where people were like, I'm gonna think about the bigger picture and how my actions impact others. And in five seconds, it turned into Kancil culture, and just crazy things where everyone's broken down. Like, we ran out of people to judge in the moment, and we started judging people posthumously. Back, do you mean, like, we went back 300 years, and we're like, Hey, this guy. Can you believe what he did? And I'm like, Well, I mean, 300 years ago, that was probably like, a, like, a Tuesday. You don't I mean, like, like, we're all growing as people. And now we're trying to judge people going backwards, and your generation got caught right in the middle of that. And I'm wondering if that hits you at all? Do you ever think I can't say this out loud? Not because I disagree with it, or because I even think my friends will disagree with it. But because if it gets out into mainstream culture that I said this, that I could, that somebody could come after me for? Do you ever have to have those thoughts?
Makalay 1:06:34
I do just because also like, I feel like with social media, and like, even like, technology, like not in person, like anybody can interpret anything differently than how you said it. And like, with there being so many different ways to like saying something someone, like someone might find it funny, but then some of my like, take it and twist it and think it's offensive. So I like think about that a lot. Just because it's like, sometimes if I like think something I'm like, is it even worth saying that because it might get taken the wrong way? So it's like, I don't want to have to deal with like someone saying, like, that was really mean. And then it's like, a whole like, no, that's not how I meant it. Like that type of thing.
Scott Benner 1:07:10
Yeah. You know, the problem is that people have an ability to, to reach you at this point, not you, but people like because of electronic electronic communication. Because before you could have been in the lunchroom when you were eight and said something and the girl down the the end of the table heard it and thought they didn't like what you said. And they'd have no ability to tell anybody about that. Maybe a couple of people that their friends, but then it would die like that. Right? Like, again, the telephone can't work that well. But it but digitally, it feels like because the person reaches you that their that their thoughts are more important than they actually are. I don't know if that makes sense or not. But
Makalay 1:07:49
it does. Yeah, it's just
Scott Benner 1:07:52
it's not real. Is my is my point is it's cool. It's cool that people think, what they think and not everybody has to agree with each other. But if somebody doesn't agree with you, and moreover finds what you said offensive or whatever, their interpretation of your speech is not real. It doesn't actually affect you. So I don't know, I just I think it's sad that, that a whole generation of kids actually feel like, Oh, I can't say something or do something or feel something. Because I could get cancelled. But you can't Michela, you can't get canceled. You're not famous. You know what I mean? Yeah, like that. I mean, don't get me wrong if you if you took the last couple minutes of this podcast that come out for I don't know, racism. You don't I mean, like, but in day to day stuff, like, I don't know, I hate that you judge yourself. It makes me sad. Yeah, I
Makalay 1:08:46
mean, I try not to, but sometimes it's like, I feel like with society today, like it's hard not to have that like as your first instinct. Yeah. Trying to
Scott Benner 1:08:56
try to ignore it. I think it's meaningless. I don't even think it's real, to be perfectly honest with you. For sure. Yeah. Because you're not the you know what I mean, you're not not a congressman. You know, you're not a you're not somebody with a public like, facing? I don't know, Mikayla, who cares. So we, nation, you're 22 and I'm 50. done talking about this, but I don't know. I just thought you're such a sweet person. I just want you to go be yourself. I think you're you're an asset to humanity. Thank you. That's so nice. I mean, except for the fact that you might just bang your head. That part. Yeah, like that sucks. Hey, do you ever think of wearing like, like, what am I want to say?
Makalay 1:09:38
Are you gonna say helmet? No. Oh, I've heard that. So many times. What have people said that to you? Yeah. Like, okay, they're kidding. But then it's like, sometimes I'm like, Okay, I'm gonna just like say that they're kidding, because I don't want to believe that they're serious. And whatever happens happens, it's fine. I've recovered from six concussions. So if I get a seven year old that'll suck. But
Scott Benner 1:10:01
no, I was just what I was gonna bring up is that my son grew up around this kid who just had a bunch of concussions, they were all sports related. And, you know, and silly things like, you know, one time it was football and one time it was he got hit with a, like somebody passed a basketball like across the court, not to him, and it hit him in the head. And so by the time he had three or four concussions, they made him stop playing sports. But they can't make you stop walking around. Like that was the disconnect that I was trying to understand like yours is like, your body just goes over the way it goes over. So if you've if you've hit your head that many times it stands to reason that if it happens again, you're going to do it again. So I don't I don't know. Is there any conversation about how to deal with that? Because I can't for the life of me over the last hour, think of anything that would be helpful.
Makalay 1:10:51
I'm not really it's just like, a disc. Hope is not going to happen again. Because like, again, like I tried to not think about all the time like I could have a seizure right now. So I tried to not think about like, Okay, I can't hit my head, even though like they're not directly correlated, because I've gotten concussions, like not from seizures, like I got a concussion in. I think it was like September of 2020 walking up the stairs in my like, apartment at school, doing laundry like the this like piece of wood underneath the stairs was like too low and I was on my phone and I just like ran right into it. So I'm like, I have to start doing dumb things like that. But I don't know, I tried to just be careful when the best I can. But I'm like, I'm not gonna let it like stop me from doing what I want to do.
Scott Benner 1:11:36
Yeah, you should just slide in feet first. Mikayla. Yeah. Well, the one last thing I didn't ask you about the seizures that I'm interested in is there's no diagnosis for structurally what's happening.
Makalay 1:11:52
Like with like, can
Scott Benner 1:11:54
they say hey, there's a I don't know like I don't know anything about seizures but did they have they scanned your brain have they been able to say I see what's happening here or
Makalay 1:12:03
so they every time I've had a seizure I usually get like admitted to the hospital after and then I get an EEG which is like they can be like various amounts of time like some people can have them done like in the office for like 40 minutes but mine are usually 72 hours and it's like little like I guess like leads all over your head with like this like really strong glue and then they wrap it up. And it's just like monitoring your brain activity. So they like try to do those to see like, after the seizure and like they're usually normal after the seizure which is the weirdest thing so they're like okay, probably was like sleep deprivation you hide your seizure. You slept it off, now you're back. But it's like, I don't know with with the medication, my brain activity is completely normal. But when I have the seizures, it's usually sleep deprivation. Um, I've worked with the other ones like the one on Christmas like I was a little bit sick. I was tired and they say excitement. But like again like I'm pretty happy person I get excited a lot. So I'm like, I don't I don't think that's right for me. I don't think that's yeah, they did like it not even like flashing lights or anything like that. It just is like kind of random.
Scott Benner 1:13:18
It's amazing. can sleep deprivation trigger a seizure? Yes, it can. seizures are very sensitive to sleep patterns. Some people have their first and only seizures after an all nighter at college or not sleeping well for long periods. Wow, this is there any side effects of the medication Are you very happy with it?
Makalay 1:13:35
I'm really happy with it. The for I there was one that I was on and it's like not a febrile favorable medication but that was the one that I had to be on like right away because I could start taking like a high dose of it while I worked up on the other one. But I slowly like worked up to like a good level on the one medication that was the good one and then slowly backed off the other one. So during that time, it definitely was like okay, this this is a little scary because I'm like going off one medication. But since then just being on the one has been like really great. And it's like I think they say like the best seizure medication there is because there are like minimal side effects.
Scott Benner 1:14:18
Wow, it's amazing. Well, I'm glad they found something that helps you it's it's really astonishing. Hey, how are your blood sugar's like, what's your agency? What are your goals for your blood sugar's
Makalay 1:14:27
my agencies are usually between six and six five. Nice. Nice, so I tried to keep it pretty tight.
Scott Benner 1:14:34
what's your what's your high alarm, low alarm setup?
Makalay 1:14:38
AD and one Ed, when
Scott Benner 1:14:41
do you let the algorithm do most of the work or do you intervene?
Makalay 1:14:45
I intervene sometimes. I try if I'm like just going over I try to do like, if I'm like, the arrow is like slightly up or like I'm not too high out of range. I let the pump take care of it. But if I noticed like okay, I ate something an hour ago and I didn't think I needed insulin for it now or then and now I'm spiking then I'll give myself insulin and add the correction and be like, Why did I do that? But I sometimes I get so controlling because I'm like, so like, I need my blood sugar's to be perfect. So I get so controlling, like, do it over the pump. I'd say it's like 5050 Like, especially while I'm sleeping like I sleep through the night I just let my pump do everything.
Scott Benner 1:15:25
Yeah. Well, listen, we did your settings change greatly when you got to college? Or were you not using control IQ before college?
Makalay 1:15:35
I wasn't using it before college.
Scott Benner 1:15:38
Did you commute? Or did you? Did you stay there? You said your high school. I stayed. Alright. Excellent. Did your settings change much when you got to college? Um, do you remember?
Makalay 1:15:52
Remember? No, I don't think so. The only thing that changed was like, like the times of my, my profile, like, when I was like eating lunch at school, like it was like, the same time like 12. But then, when I was like, had tendencies to eat at different times at college, then it was like changing my, like the same ratios. Just different time settings.
Scott Benner 1:16:17
Okay, I see. How about leaving school? Did your stress lesson and your insulin change or anything like that?
Makalay 1:16:25
Um, my stress definitely lessened, but I've been like, pretty consistent with my like, profile. Okay.
Scott Benner 1:16:34
Interesting. All right. Is there anything that we haven't talked about that we should have?
Makalay 1:16:38
Um, I don't think so.
Scott Benner 1:16:41
You think we did. Okay. Yeah. All right. Cool. Well, then I'm gonna say thank you.
Makalay 1:16:47
Thank you. Thank you for having me.
Scott Benner 1:16:49
It's my pleasure. Hold on one second.
A huge thanks to Mikayla for coming on the show and sharing her story. I also want to thank athletic greens and remind you to get your ag one at athletic greens.com forward slash juicebox. Want to save 35% off your entire order at cozy earth.com. use the offer code juice box at checkout. And do not forget my favorite type one organization touched by type one they're on Facebook, they're on Instagram. They're touched by type one.org. Go find the private Facebook group Juicebox Podcast type one diabetes doesn't matter if you have type one, type two, Lada any kind of diabetes. All are welcome. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.
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