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#185 A Really, Really, Really Wonky Diagnosis

Podcast Episodes

The Juicebox Podcast is from the writer of the popular diabetes parenting blog Arden's Day and the award winning parenting memoir, 'Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home Dad'. Hosted by Scott Benner, the show features intimate conversations of living and parenting with type I diabetes.

#185 A Really, Really, Really Wonky Diagnosis

Scott Benner

wonky as it gets…

Janae has type 1 diabetes... or does she?

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Alexagoogle play/android - iheart radio -  or their favorite podcast app.

+ Click for EPISODE TRANSCRIPT


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

Scott Benner 0:00
Hey, welcome to Episode 185 of the Juicebox Podcast. Today's episode is with Janae. Janae has, well, when Janae wrote me she had type one diabetes and when she got on the podcast, I don't I mean, I think you're just gonna have to listen. As always, the Juicebox Podcast is proudly sponsored by Dexcom, the makers of the G six continuous glucose monitor by Omni pod, the only tubeless insulin pump that you will ever need. And really, it's the only tubeless insulin pump there is. So I mean if you wanted to, but anyway, you get the point on the pod. And by dancing for diabetes, that's dancing the number four diabetes.com visit them today to see adorable children living with Type One Diabetes dancing. It's really kind of sweet and wholesome. Check it out.

Okay, so this is Janae. And as I was editing this podcast episode, and I'm gonna give you a little look behind the curtain that you may or may not want, I record them, save them back them up, make duplicates, and then I don't listen again until it's time to put them on the on the show. And so a day or two before you hear it, I sit down and listen again, I edit out like loud noises because you know, that wouldn't be fun to listen to, you know, maybe somebody like coughs. I tried to get rid of that. But I also end up listening again, almost for the first time, because the first time is the conversation. It's me going back and forth. And the second time is me actually hearing what was said, as I edited this episode, my wife, Kelly was working from home that day. I got about halfway through and I said this one's fascinating. Like on the edge of my seat. I don't know what's going to happen. And my wife says, What do you mean, you don't know what's gonna happen? You interview the person? I said, Yeah, I know. But I forget. So anyway, if you've never heard it before, there's a lot of suspense in this one. And it's just wonky. You have to hear.

Please remember that nothing you hear on the Juicebox Podcast should ever be considered advice, medical or otherwise. And to always consult a physician before making changes to your medical plan. You're ready for janai? very informal, I just asked you to introduce yourself. I asked you some random question that pops into my head and then we start talking. Okay, I wish it was better planned out than that. But it is not.

Janae 2:35
No, I have like a couple of topics that I want to touch on for sure.

Unknown Speaker 2:39
I could tell by your email.

Janae 2:43
We'll send that then I've had the most amazing and weird twists and turns I will tell you.

Scott Benner 2:49
So well. Listen, I'm already recording. So just introduce yourself Anyway, you want to be known. Just know I have a little bit of a head cold. If I'm talking and all of a sudden I stop. That was just so I could breathe. Go ahead, just anyway you want to be known.

Janae 3:06
I'm Janae. And I was diagnosed in early college years, my freshman year actually. And I've been solo living with Type One Diabetes. Actually, I don't know if this is a good introduction. Not good. I don't have type one diabetes. I found out

Unknown Speaker 3:26
you said that you don't have type one.

Janae 3:28
No. Do you? I don't think so. We don't know what I have.

Scott Benner 3:32
Fantastic. Things are going great. And you're saying?

Janae 3:34
Yeah, it's but that's the thing is it is going great. It's like the medicine I'm on and how like I just got the freestyle Libra. So I am doing like checks and all the like semi regular things that type one diabetics do I live does one for seven years. So I definitely have some experience. Okay, we're gonna,

Scott Benner 3:58
we're gonna, we're gonna have to slow down and start over. I can feel it. So okay. No, no, no, no, don't be sorry. I got a lot of good information here. So you're a freshman in college, which made you eat teen ish. Yeah, I was 18. Okay, off on your own, like anywhere near home or we're pretty far from home.

Janae 4:15
Oh, just a couple hours. Okay. Um, far. Yeah.

Scott Benner 4:19
You couldn't drive home on a whim, right? No. Okay. So far, not far enough away. you're diagnosed while you were at school, or while you were home on break.

Janae 4:27
I know when I was at school on Valentine's Day.

Scott Benner 4:32
Okay, let's just we'll go through that. How did that happen? Were you on a date? Were you sitting at home saying how much? Valentine's Day Well,

Janae 4:41
I've never been a fan of Valentine's Day. And I definitely am not. Now. That was the day I diagnosed. But it was I had a urinary tract infection that started like a week before and I was just drinking cranberry juice trying to get it to go away. And it seemed to go well. But then I started having these stomach pains, because the infection actually moved into like my kidneys and into my blood. I didn't know. And I had a friend Dr. me just because I was like, Oh, my stomach hurts so bad. And they're like, is so bad You can cry? And I was like, Yeah, I guess so I just wanted to tough it out. It was just weird. It didn't seem like there is a reason for those pains. So I went to the hospital, and then they checked my urine and they're like, can you come back here? And then they said, I, they actually said that they didn't know for sure. But they think that I'm type one

Scott Benner 5:39
should try it. Let me ask real quick. Did you actually have an infection also?

Janae 5:44
Yeah, I had it all through my blood and my kidneys and then into my lungs. And I was I was only hospitalized for three days. So I mean, it was a bit but it wasn't as bad as it could have been. I guess they must have hit you with a good antibiotic. Yeah, so

Scott Benner 5:59
you're now you're 18? Did parents show up? Or did you just by your by yourself with friends?

Janae 6:04
No, my mom, single parents, she came right away. Like as soon as I called her, and she spent like every night with me in the room. I like barely alone.

Unknown Speaker 6:15
Which is good and bad.

Scott Benner 6:18
So what what what made them say you had type one? Was your blood sugar elevated when they looked at your urine?

Janae 6:24
Yeah, well, they found proteins I think, which was the like, alert that they had. And then they checked my sugar. And I think I was like 300, almost 400 or something, which is obvious sign. And I don't know why they said that. They didn't know exactly. The reason I honestly lived for a very long time not really understanding my diagnosis and like not understanding why they like weren't sure. And trying to figure out like, Well, can we be sure? Like I don't know. But like I kept having to do everything, like take insulin and check my sugars and do everything a type one would do. So it was very confusing for many years.

Scott Benner 7:07
But you left the hospital in this couple of days after the infection cleared up with the understanding you had type one diabetes and you wanted a meter and all that stuff. And you were back at school? Yep.

Janae 7:18
Okay, and then my mom left me in my dorm room. Your mom? I hear you. Yeah. And I was just like, sitting in there like, Okay. still feeling horrible. But it was just the days.

Scott Benner 7:32
Yeah, so, so. Okay. And you live for seven years, like that? All through college? Your first three years? So you're 1819 2022 to 2425 years old? Is that how old you are now?

Janae 7:48
Well, I guess maybe eight years I'm cuz I just found out. Like, a month ago, two months ago, maybe like the changes in my diagnosis and stuff. So I'm about eight years. Maybe you miss math class while you're in the hospital or something? Like I went to art school. I don't really put a lot of emphasis on math.

Scott Benner 8:11
Okay, so so I, I think we're gonna end up going backwards at some points. But let's Pulp Fiction this and jump forward a little bit. Okay, do you because when you eat, you know what, I don't usually do this. But hold on a second. Yeah. When you emailed me Initially, I was diagnosed in 2013 2009. With MDI, for it was by myself as possibly type one. C peptide. Okay, so somewhere along the way, it is still defective, because I take insulin as well, but sometimes from it when you Is it possible, you just have the maybe you just have the flow for like eight years ago, it's possible now? Probably not.

Unknown Speaker 8:58
So okay. Not sure what

Scott Benner 9:00
happened recently that that now has you on here saying I don't have Type One Diabetes after thinking you had it for eight years. When Elizabeth contacted me, Elizabeth runs dancing for diabetes and said I'd like to put ads on the podcast. I said, Well, what do you want to accomplish? And she told me, she just wanted more people to know about dancing for diabetes, like Well, that's easy enough. I'll just say dancing for diabetes.com a bunch of times, and hopefully people will, you know, surf over and see what it's about.

Unknown Speaker 9:29
That's it.

Scott Benner 9:30
That's how nice she is. shouldn't ask me to sell you anything or do anything. She just said, Can you tell them dancing, the number for diabetes, and I said I can do that. Dancing for diabetes, dancing, the number for diabetes. I mean, you can take a minute right? Check it out.

Unknown Speaker 9:47
So what happened?

Janae 9:49
Well, I think it brings in the problem of getting a good doctor and getting the right knowledge and the right science behind it because the reason why I was taking insulin and like measuring my sugars and like, I remember asking my doctor after like, three or four years in like, I'm confused, like, what am I because I was not reacting to the insulin like normal like I was telling him, I actually don't need to take that much insulin as you're telling me to and he's like, oh, you're wrong, you're wrong, he's very elderly. And I was told by a few people like he should probably retire, you know. And he was very not proactive, not like in the nose like up and coming things, which is what I was really needing and interested in. So every time I'd asked him, he just kind of a blowed off. And when I told him about, like, I'm going low, when I'm taking the insulin that I'm supposed to be taking lows being like 40 to 60, which is pretty low for me. And I'm sorry, I lost track, I'm a bit add. And so he was like, I don't believe you. And he's like, let's do a C peptide test, which basically is testing the amount of insulin your body's like making and producing. And we took that test and I was making normal levels, which is like two point something. And that's the same amount as a normal human being. And we look back on my test. And when I was diagnosed, I was making point nine, so basically are like 0.9, or something like which type ones really should not be making any insulin. That's the whole point of like, why you are type one. So it was just like, astounding to him. But I still like needed some insulin because something wasn't working, right. Like either my receptors or like the insulin I was making was defective or something, because I would still have really high sugars, if that weren't healthy.

Scott Benner 11:44
So sometimes when you bolused, you drop because your body was also affecting your blood sugar. And sometimes it wasn't, is that the the thought?

Janae 11:52
Yeah, I think ultimately, I had the feeling like my body was making this as one and it was using some of it, obviously, because sometimes I would eat a doughnut even and I wouldn't even need to take any insulin. But then sometimes I would. It was weird. I wasn't really sure it was, it was kind of like I had to just guess and check all the time is pretty inconsistent. There'd be like phases, obviously, where I'd have to take way less insulin because my body's natural insulin was working more and then I

Scott Benner 12:24
felt probably felt like the longest honeymoon period ever. Well, and

Janae 12:27
that's what I kept getting told, like, I straight up remember telling someone who was older, like a adult who was diagnosed, and he had lived with type one for a really long time. And I mean, this was after it was about seven years. And I was telling him like my, like, how it's interesting or whatever. And he's like, Oh, well, you're just in the honeymoon phase. And I was just like, that's so insulting, because I feel like I've been

Unknown Speaker 12:53
going on for a while now.

Janae 12:54
Yeah, I've struggled with a lot of the struggles you know, really low lows really high highs, like I have to check all the all day long. You know what I mean? I have to inject all day long still. It was just like kind of unfolding because I'm like, okay, you're just as bad as a doctor you know, who doesn't really isn't listening to the whole thing. Yeah.

Scott Benner 13:17
In fairness, it's it mimics that idea. But if you know anything about the honeymoon, you have to say after, you know, after a reasonable amount of time that something else has to be you know, going on, right? It doesn't take that Oh, can you give me one second here my wife was texting me how much insulin for Panera Bread broccoli, cheddar soup, and mac and cheese. I'm not sure if there's 111. I'm gonna say huh. Bolus. This is complete gas. Let's assume she's gonna eat 236 they're gonna probably have bread, right? Yes, seven, eight. Let's call it 10 because 10 seems like a nice round number and say, okay, when are you starting? We'll find out how long till she starts deep because if she's going to start to eat in the next couple of minutes I'm going to overhaul is to cover for the lack of a Pre-Bolus. Let's for today's on the pod ad. I'm just gonna read from the notes that you guys have sent me. My son's a one C was eight. But now it's 6.9. After I got the on the pod, thank you for the podcast. I told our doctor that we wanted a pump. They tried to get us to take a Medtronic but I said no I heard about the Omni pod on the Juicebox Podcast. They pushed back I pushed harder. But now we have an omni pod. And we love it. I want to thank you for the podcast and listening to the show. We've had a breakthrough and we've moved to the Omni pod and the Dexcom g six. We started with an A one C of 8.1 but now my daughter's a one C is 6.8. I used to accept blood sugars from My son of over 200, but then I started listening to the podcast, I got an omni pod. And as a onesies already gone from 8.5 to 7.6. And I know it's gonna go lower. I want to share with you the last six months of my life with Type One Diabetes, I started listening to the podcast and I got my agency down to 6.4. The next time I went, it was 6.1. And I can't thank you enough for telling me about the Omni pod. I'm gonna keep going. I'm not even through the last two weeks of emails here. I'll just look again, click, just search the word on the bottom of my email. I've been living with diabetes for 15 years. And until I found that out next comment on the pod from you. I don't know what I was doing. My agency is going from, oh, this one's great. My agency is going from 8.5 down to 7.5. down to 6.7. down to 5.5. Thank you. Don't thank me thank Omni pod. Go to my omnipod.com Ford slash juice box to get a free no obligation demo of the best, most amazing tubeless insulin pump. It's thick. It's the bee's knees. Do it. My omnipod.com forward slash juice box with links in your show notes or Juicebox podcast.com half day of school day. Kelly's out with Arne.

Janae 16:17
What's fun? Is it raining or you are

Unknown Speaker 16:19
is rainy here is dreary. I know it was so nice a couple days ago. Just

Janae 16:25
came right open horrible or I am gray. Everyone's seasonally depressed.

Scott Benner 16:32
Yeah, right. Okay, so she said just now the food already came right out. And I gave her 10 years I was gonna say 10 units. So I will say I was going to say 10 units. If you get a diagonal, Up arrow

Unknown Speaker 16:52
was another unit.

Unknown Speaker 16:58
There we go.

Scott Benner 17:02
I can't believe we ever agree on anything. The same thing might be all day. Okay, sorry about that. Now, I'm fine. Okay, so you. I mean, it's crazy, like, so what did the C peptide comes back, the doctor looks at you and says, Hey, you don't have Type One Diabetes you have?

Janae 17:21
Well, he didn't say that. He just was like, Well, it's interesting, but just keep doing what you're doing. And that's what I got told for seven, eight years that I had was every time I would go back. Like, I never had any alarming things he would use definitely big on like, you need to lose weight, even though I would say really am not that overweight, and I'm pretty active. I have like a muscular build, too. So I don't really think and my current doctor now is like, no, you're fine. Let me ask you

Scott Benner 17:55
a question. Because that's what I want to ask you like, other than getting low and messing around with all this diabetes stuff, generally healthy otherwise? Yeah.

Janae 18:04
I mean, I have lots of like, I have a lower immune system, I get infections. You know, I had all the classic symptoms like frequent urination and like thirst and you know, the classic symptoms.

Scott Benner 18:18
Yeah, I'm see, because I'm just thinking, like, if he sees you, and believes in his heart, you have type one diabetes, and you're just coming in and telling him I get low a lot. Maybe he discounts you. And when you leave, he just thinks that this person just does not know how to handle their insulin, right? Maybe there's maybe there's ways for him to write you off and write you off and write you off the whole time. And if you're generally healthy to begin with, he might just be like, Oh, this is a person who comes here. I give them scripts for their, for their stuff. And you don't I mean, they go on your way. Like I it's not an excuse, thinks it sucks, but I'm trying to wonder how you made it eight years like that.

Janae 18:54
I made it a lot by my own personal motivation and research. Like you didn't really I didn't even have a diabetes education class. I didn't even know that what that was until I got a new doctor and they're like, Are you serious? He never made you do one of those.

Scott Benner 19:12
Doctor, the first doctor and endo was the first doctor just a practitioner.

Janae 19:15
No, he was who the hospital sent me to. So it was you know, someone on the roster that they just send people to and

Scott Benner 19:25
out of a mountain or something

Unknown Speaker 19:28
like that. No, but

Janae 19:31
and I like reached a point where I was like talking to my regular doctor, and she she worked from the same building. They're not really related, but she knew who he was and she was kind of like a maybe he probably shouldn't even be being a doctor anymore. And she's like, I honestly she thought my information was really curious. And she's been kind of along for the ride in a really big support on many ways. Like she's an amazing doctor and really cares and she was really promoting me to find someone else. And I tried I even mentioned something to my endocrinologist, which he probably shouldn't do, I guess because, but I didn't know where to go. And they're like, Well, I mean, you're gonna have too hard of a time finding anyone else. So and I was just like, Okay, well, your copay, please don't leave. Yeah, he's not doing anything for me. I asked him to like write letters. Because when I lived in Illinois, right after I graduated college, like a year or two after I moved to Illinois, and I was still trying to figure things out, my mom found this research document or this research article, about Modi. Yeah. So like the mid onset youth diabetes? Which I don't really know why it's called that because I don't think it's necessarily like, I don't really understand the name, and there's different types. But um,

Scott Benner 20:55
I don't completely understand the whole. Yeah, the acronym either. But listen, yeah, that's not why we're here.

Janae 21:03
I don't think the doctors even really understand what Modi is even yet. Like, it's so new and being researched.

Unknown Speaker 21:11
But yeah, like,

Scott Benner 21:12
I find this article, did you then go whoa, wait a minute. Maybe I don't have type one. Is that the first time you thought it?

Janae 21:17
Um, well, I was so curious. In the beginning, when my insulin wasn't working, and he told me I was making. I was or my insulin, was that reacting in a predictable way. And he told me, I was making my own insulin. I was like, Okay, this is weird, like, and then he was like, well, from the beginning at the hospital, they never actually said they knew 100% that you're a type one. And I was like, but what does that mean? Like he wasn't giving me any answers, or even a path to find answers. And

Scott Benner 21:45
he just was not that then what? Yeah, that wasn't the next statement ever.

Janae 21:51
He just kept saying literally every single time like, Look, just keep doing what you're doing. You know, and he was having me, I didn't even realize sugars over like 120. And like, that kind of sugar was bad until I was listening to your podcast. I was like, oh, like he was encouraging me to lower my sugars. I was living at like, anything. Above 150 is high.

Unknown Speaker 22:13
Okay. So and so at 140 you were just like, this is great. And just Yeah, well, anyway,

Janae 22:18
I didn't, I had no clue until I started listening to your podcast mirror saying the cashier who you're trying to get and I was just like, what? I feel lower 100?

Scott Benner 22:27
Well, that's probably just because you spend your whole time at 150 by just

Janae 22:32
right. My body's used to it, but it shouldn't be right.

Scott Benner 22:36
Right. That just because it's accustomed to it and you feel okay. Doesn't mean long term. It's gonna be good for you.

Janae 22:40
Yeah. Well, he never encouraged he didn't even bring up the idea that was ever even a bad thing.

Scott Benner 22:46
Yeah. Back that from your description so far. So Ah, but now you're not with him anymore, right? No. Um, and how does? How did you? I'm interested in that, though, like, at what point did you say to yourself, I'm not, I'm not putting up with this anymore. And I have to, I have to move to some somewhere else try to get a better answer.

Janae 23:05
I know. Well, see, I tried to contact those people that my mom sent the article to at one point A few years back. But that was like a long waiting list to get the test. And it's like to get a test to see if you're Modi, which I had no clue if I even was like a seven panel genetic test and really expensive. And they'll do it for free. But you have to be on this like waiting list kind of thing was like multiple years. So that kind of just fell on the wayside. I have emailed her back and forth, but nothing really happened. And then I moved back to my home, or I live in Columbus, Ohio. So I moved back to Columbus. And when I moved back a year after I moved back actually met someone and ironically, his uncle has diabetes, his aunt had diabetes, his dad has like hyperglycemia. And their family is really into like, the fundraising and the whole diabetic scene here in Columbus, which was really amazing. And we have OSU, which is the research college. And so but that's the thing, it's so hard to get into ocio. Once you're in, it's good, but I basically just went to the wrong hospital on the get go. Because if I would have went to issue if you go to the hospital for anything, and you go to OSU, then you're already in the system

Unknown Speaker 24:27
to be on a patient just like that. That's right.

Janae 24:30
And I didn't I didn't even think about that. I thought I just had stomach pains anyway, so but so basically, I had tried, I called even like, can I possibly become like a patient here? And they like got my information were like, well, I don't know. And they put me on this list, but like, I predicted I wouldn't really hear back for a really long time. And he had doctors in the family my boyfriend does. And they actually talked with me about it. They got me into appointment so I could get into the system, and then directly referred me through email to an endocrinologist at OSU and I've been working with her and within three appointments. Like my whole perception is like turned around. It's been nuts.

Unknown Speaker 25:15
It's gonna say how long ago was that? Um,

Janae 25:20
probably six months at four months.

Unknown Speaker 25:24
Do you feel better?

Janae 25:26
Yeah, it will. It's not. To be honest, I am not even taking insulin anymore. Okay, so what do you have?

Scott Benner 25:34
Let's keep going for a second with the feedback messages. Scott, thank you so much. I learned how to stop my spikes. I don't think I ever could have done it without seeing the information that the Dexcom g six was showing me thank you for introducing me to the most amazing thing that's ever happened to me. This one's just all in caps. And it says what are other people doing without Dexcom I can't even I can't even Scott, I wanted to send you an update. Since we got the Dexcom. I just wanted to say thank you and tell you that my daughter's agency has gone from 9.3 to 7.8. I still feel like we have a way to go. But this is an incredible improvement. That gives me nothing but hope. This last one is a story someone told me personally. They said that their child was diagnosed, they were following all the instructions that their doctor gave them. They didn't know what to do. They found the podcast, they got an insulin pump and on the pod, then they got a dexcom g six. This person told me that the stress they were feeling about not being able to manage their child's diabetes the way they wanted to cause them to need to start on medication for depression. But then they said they got the dexcom they got the on the pod. They listened to the podcast, and they were able to go off the medication. And their child's doing amazing now telling you guys I love getting these notes. And you'll be able to send one one day to if you just go to dexcom.com forward slash juicebox or click on the links in your show notes or Juicebox podcast.com. Scott, I've had Type One Diabetes for 34 years, I just switched to a dexcom like you said to my Awan sees going from 8.1 to 6.2.

Unknown Speaker 27:21
So what do you have

Janae 27:23
that but that's the thing. Okay, so my first appointment, we go through everything. My history and my history. Um, my mom's side of the family is very bizarre, my grandma, who I just met a couple years ago because my mom was adopted. And we never even met her until my mom was 50. And we have a good relationship and everything. But in meeting her, we found out some more medical history. And she was diagnosed with type one when she was like 10 maybe and like, three months from her diagnosis. They wanted to send her to a camp so she could like learn how to take care of herself and everything. And by the time it was time for the camp. They undiagnosed her because she wasn't showing signs anymore. And that look, that was it. She's like 70 years old and still doesn't have any

Scott Benner 28:14
baby. She just didn't that moment they diagnosed her But since then, yes, gone.

Janae 28:18
Yeah, but her sister did have type one. So it's just a very weird thing. But people supposedly with Modi have weird histories like that of people being diagnosed or diabetes going away. And like you have to almost have like certain family history that lines up. But

Scott Benner 28:38
you're still learning about all this

Janae 28:40
this right? Pull the weirdest thing is okay, so through the three appointments with my doctor, we kind of concluded like, at the second appointment, the first appointment was just kind of to get the base points, get my history, kind of get my levels and what I'm doing and then try to get me to a lower Shergill sugar level in general not to be comfortable at 150. So I worked on that. And then the second appointment and we did a whole bunch of tests. So waiting for this stuff to come back the second appointment, we had the test come back and she's like, well, you're negative for the antibodies and everything that people with type one normally have. So I've never had the antibodies and everything. I've always been negative though since the beginning. That's I think why people did not hundred percent say I had to be type one because they

Scott Benner 29:31
go back and they use the they didn't see with you.

Janae 29:34
Right, I was negative for them when normally type ones are positive. And she was like just verifying them and she's like, I don't know, I think you might be moody. And that was kind of why I got in with her because she's really big on research and like the newer things with Modi and everything. And so she's like, we're gonna go ahead and test you for Modi. In the meantime, we're gonna just take you off insulin Put you on Victoza which is a type two or weight loss medicine either or, which is very crazy and it was a really weird adjustment but basically she was saying that I was making insulin so she wanted to see if I can utilize my insulin better with Victoza like, interacts with like receptor like insulin receptors and like releases less glucose into your body and then it also tricks your mind to like crave less carbs. It's like really crazy. It's like a neurological drug, but you inject it the same way. So I have to do an injection every day. Just like infant The only one and I had to like wing on to it because it made me very sick. Just I think with the shock of not having insulin. You know what I mean? After eight years it was so crazy to like, I felt so tired. I was very nauseous. The medicine does that. But since that day, I have like literally just been taking the Victoza. Okay, so that's been working. But the really, really, really weird thing is when we she got went ahead and ordered the test to see if I was Modi only one place in the country does it only like takes the test and then they have to send it to the only other one place that actually like, does the test. And it's like, like I said the seven genetic panels or something like really intricate It was like $6,000 but with my, how much I make, like only 800 for me.

Unknown Speaker 31:36
So actually being broke. That's Yeah,

Janae 31:40
I'm like, okay, that's not that bad. 6000 is like insane. And my old doctor, that was his excuses. Like, well, I mean, it's a lot of money. I don't know, insurance doesn't cover and that's just what he would say anytime I ever was like, Well, can we just do the tough, you know, just to see and he's like, it's hard to write up. And that's what my doctor said Is it is very hard to order, like even to get it like order but she's very forceful and very, like, in the know, and I guess does that stuff all the time? But um, well, not that all the time though. She doesn't I don't think a lot of it for her. For her right people right?

Scott Benner 32:14
away. You named the episode a minute ago, it's just gonna be called the really, really, really weird thing. And then because we are a half an hour in, I cannot figure out what is going on, which is fascinating. It's it's, it's I mean, I'm just wondering, so let's stop for a second psychologically, or was it like to live with Type One Diabetes for eight years and not have it? Dancing for diabetes the show. Dancing her diabetes holds an annual benefits show featuring award winning and nationally recognized performers. They create an evening of entertainment and hope. These people are champions throughout the performing arts community as well as in the hearts of those affected by diabetes. Each year, the show grows in magnitude reaching new audience members, due to the generous and loyal support of the community and those directly involved. Dancing for diabetes continues to grow and fulfill its mission. Until a cure is found dancing for diabetes is passionately committed to the fight against diabetes, go to dancing the number for diabetes.com to get more information about the upcoming show. Alright, everybody, thank you. There are no more ads the rest of the way we're going to find out the rest of Janae story and I have a little update that she emailed me that I'm going to read to you at the end. What was it like to live with Type One Diabetes for eight years and not not have it?

Janae 33:41
I think I'm still in shock. I honestly don't even think I've really registered just last night, I got the freestyle Libra, which I've never had anything on my body because originally obviously I was emailing you because I did just a regular glucose monitor, you know, and I was emailing you mainly on that experience that I had. So I still I'm checking my sugars and stuff. So I got that and I was just like, Oh, it's gonna be so weird. I have something on my body and he was just like, you realize that your life is so different now like that's nothing

Scott Benner 34:15
it's just a strange, it's it's hard to put into perspective, honestly, you know, yeah, so when you check your blood sugar, what is it usually high or low or at to be

Janae 34:28
the Victoza has helped really, um, it helps me lower my sugar myself. Um, and basically my ranges are like 90 to 130 at the highest and it's like right after I eat.

Scott Benner 34:44
Yeah, that doesn't seem like you have diabetes.

I'm gonna have to license this sound that Scooby Doo makes when he's confused and put up all three episodes here. Because I genuinely so it obviously it's something different. And I while you were talking just a minute ago, I tried to pull up, you know, moody diabetes from the ad. Yeah, there's a lot of information here. And I'm gonna link it so people can go through it. Yeah, exactly the matter is, is that I don't understand that enough to have. If you want to talk about your favorite television show instead. I maybe I watch it too. I'm a fairly. I really like madami Oh, no, but, but but No, but seriously, like, I mean, you must be in shock still, because the one thing I don't understand is if you were using insulin, how are you not constantly low? Like Yeah, militating li low? Are you just using a very insignificant amount? Or do you think your body was in a different phase at that point?

Janae 36:09
The thing is, is I had to inject fairly frequently but I was literally only doing like one unit one to two units. I would my carb ratio was like 30 carbs per one unit. And back

Scott Benner 36:23
then if you didn't inject that one unit what would happen your blood sugar after you ate

Janae 36:26
I would go up to like two that 200 but I was also comfortable at being a little higher. So technically, I probably could have done better with like a couple units instead of one unit sometimes.

Scott Benner 36:36
So there was a time in your life where if you did not take insulin and you ate food, your blood sugar would go up over 200 and yeah, that doesn't exist anymore, but you're taking with Victoza Uh huh. Yeah, I'm gonna put an ad here because I need a second what do you think we should do the ad live together because I literally don't know what to do. I've never done that before but it's starting to make sense to me. But we'll hold tight so I'm now looking up Victoza, because why not? What type of insulin is Victoza? It's not influenced. As I'm reading the internet. Don't yell at me. Similar to insulin but not insulin. See, you are right. These medications are in the class drug called incretin mimetics which improve blood sugar control by mimicking the action of a hormone called glucagon like peptide adds a lot of information I don't mostly understand. Let's go to the more dumbed down how Victoza works page. This is not an ad for Victoza no no this is me trying to figure out what the heck is going on.

Janae 37:44
We can learn together

Scott Benner 37:45
learning so Victoza is made by somebody who's made by novo when food exits your stomach too quickly after you eat your blood sugar levels can rise out of range. When your liver makes too much sugar your blood sugars can get too high when your blood sugar so high your pancreas needs to make additional insulin to help right well that didn't help us three ways that I work Victoza works in three ways like a voert like the hormone GLP one to help control blood sugars. Victoza slows food leaving your stomach

Janae 38:16
yeah definitely does that right

Scott Benner 38:18
Victoza helps prevent your liver from making too much sugar and Victoza helps the pancreas produce more insulin when your blood sugar levels are high. Okay, that makes sense. Hold on it's not insulin it's not a weight loss product Have you lost weight?

Janae 38:33
Yeah, actually, I'm not an unhealthy amount my doctor was like are you eating but um I lost about seven pounds

Unknown Speaker 38:41
I would take that

Janae 38:43
not doing anything I know I was like Okay, I get

Scott Benner 38:45
it all right, he The most common side effects of Victoza may include nausea yeah never have that ever stomach ever queasy? Yeah, I've had all these about poopy that's not solid you have that ever.

Unknown Speaker 39:00
Oh yeah, I

Scott Benner 39:01
have IBS so vomiting decreased appetite indigestion and constant I love that. Yeah, constipation or diarrhea.

Janae 39:11
Dehydration I think that it has a lot to do with that because you get dehydrated on it as well. And when you're dehydrated, you can actually have diarrhea, which is weird. Like it's a symptom of being dehydrated I think.

Scott Benner 39:23
Okay, so now we know a little more but what I want instead of how Victoza works I want like who needs Victoza like like what we're gonna we're gonna totally use the internet to figure you out Hold on one second. I'm googling who needs Victoza

there's a frequently asked questions way like you Victoza raise your blood pressure.

Oh my gosh, this is the worst podcast ever. Hold on a second. I'm not even talking I do not use Victoza if you your family have ever had MTC where if either and in the current system condition what is Victoza?

Unknown Speaker 40:17
Hmm,

Janae 40:18
from my understanding, because my one doctor, my, what go ahead

Scott Benner 40:23
you tell me your understanding because I have zero understanding

Janae 40:26
my one doctor. Okay, so I just see this was like we're gonna put you on this Victoza thing. It's an older substance, I guess that's been around for a while. So that's why she felt it was an easy switch for me to do. She said, definitely do not take insulin on it. Even if you reach 200. The only reason why you would need to take insulin is if you're over 300. Because that can make you like go drastically low and really hard to get back up. And I've never had to take insulin on it. So that's good. But that's basically the only information I had to go off of except for like, the things I told you earlier and what you kind of read. And then I went to my regular doctor, and he's the one who's been super supportive and really interested in everything. And I was kind of like laying it all out for and I told her what I was taking, she's like, Oh, I give like a version of that to my patients for weight loss. So I think for the most part, people use it when they're type two, or when they're overweight.

Unknown Speaker 41:27
So I see

Scott Benner 41:29
for type twos, it can be used for the treatment of cardiovascular diseases. Let's see.

Unknown Speaker 41:40
Yeah,

Scott Benner 41:41
I don't understand heart problems, kidney or liver is safe for you tell your doctor. Geez, I need I need a refresher on this. Okay. Okay. So but so the the long and the short of it is is a lot better than seven pounds, which i think i think so. And you feel are you getting low blood sugars? Um, yeah,

Janae 42:05
I have had a couple but my lows were like 90 of my doctors like that's not Wow, that's

Scott Benner 42:12
but I'm hoping my blood sugar's lower than that right now.

Janae 42:15
But I don't know. I wasn't adjusted yet, though. And I definitely was giving me the shakes. I felt like I needed to, like, just eat like a couple documents.

Scott Benner 42:26
In the beginning of this, what you're so right in the beginning of this trance this, like this transition in your life, you know, like it's, you don't even know what the heck's going on yet.

Janae 42:37
Now, well, and I haven't even told you the best part. There's a better part than that. Go ahead.

Unknown Speaker 42:41
I'm listening. Yeah.

Janae 42:43
So anyone else who's listening, I need a little help. Maybe because when we took that Modi test, I came back negative. So my doctor was like, I don't know what that means. You literally have no known signs for Modi. I'm gonna have to contact some of my colleagues and maybe find someone we can send your blood to. Basically, I might be a test subject for someone out there because what I have doesn't seem to exist.

Scott Benner 43:11
You stop taking the Victoza right now what do you what happens? Do you know?

Janae 43:16
Oh, I definitely would have like higher sugars. Probably what would happen before when if I was when I was taking insulin and stuff. I mean, I still took I took Lantus and no vlog and I needed the long and long acting and the short acting, I would definitely have high sugars and stuff like that, I would no doubt about it. I need something you know, and I need to be active and I need like, the basics of all what type ones need, but I really am blessed to be able to find this medicine. You know, that takes significantly less work and time. You know, like everything that is so hard working and so stressful. You know, it's still stressful. But I will definitely admit it's not anything like what type ones have to go through anymore.

Scott Benner 44:12
So now I'm on Modi awareness calm. That's fantastic. I feel like there's nothing I could have typed into Google that wouldn't have come. What causes Modi results from a mutation or errors in a single gene? cases the mutated gene is inherited from a parent we can fake. It sounds like

Janae 44:30
I know it's 50%. It's about 50% if you have Modi, whether your kids will have it and

Scott Benner 44:38
it's different from other kinds of diabetes. Modi is unique because it is caused by mutations. This makes it different from type one type two which are caused by changes in genes and or other factors such as being above Okay, unfortunately moody is often confused with type one type two. Who gets it let's get them that. How do I find out if I have it? There's a genetic test, which we've already heard about from you, that you are now negative for and wondering, right? Good times. symptoms, many patients may have the usual sciencism. Sometimes, they may have the usual signs and symptoms of type one and type two, like high blood sugar, thirsty urination. But Modi patients do not have these symptoms. But many, many patients do not have these systems if you were your child was simply Jesus treatment, several types received, for example, many Modi's can be treated with simple changes in diet and exercise. Have you just tried going for a walk, it's what other times

Unknown Speaker 45:43
it just fixes it.

Scott Benner 45:45
There are also types that must be treated with insulin. Once a person is diagnosed with Modi, his or her doctor will help the person to get the right type of treatment. Well, yeah, and that's the that's the path you're on right now with this.

Janae 46:01
Well, there's different types of Modi.

Unknown Speaker 46:04
Are you on the same page? That's amazing. No, I'm

Janae 46:06
telepathically

Scott Benner 46:09
said are the different types of Modi's caused by media. Today, scientists have identified eight genes that can cause several unique types. Wow.

Unknown Speaker 46:17
Yeah.

Scott Benner 46:18
How are they different? Is there a cure that there's not a cure? There was a cure, you wouldn't be on the podcast, you'd be like, Modi, but they cured it. I'm wishing it. Tesla. Thanks. It's pretty common. over a half a million people united states have it, which makes it about as common as type one. I don't think that's right. But close.

Janae 46:38
I actually heard my doctor said it was like 5%, or something of all diabetics, or something have Modi I'm from my understanding, it's kind of rare.

Scott Benner 46:50
And so but you still have the same it says here, it's still still very serious. Because if you let your blood sugar get out of control, it's not good, right? different, you know, right, does what it does,

Janae 47:00
I definitely need to be taking care of myself. And being a thought I got the freestyle lever, I mean, I still need to be checking my sugars. See, the active

Scott Benner 47:07
belieber for you makes a ton of sense. Because you're not concerned that you're going to be like shooting up or shooting down and it's like testing your blood sugar, but without pricking your finger. So, right, I think it makes a lot of sense for you. Um, what should I ask us with my doctor? Nothing. All right. So I'm gonna keep I'm gonna put this link into because we're not just reading the internet on the podcast, but I think I don't know where else to go with it. Because I am. Because what you're saying, Let me tell you a secret about the podcast. People say stuff. And when they say stuff, I think, Oh, that's interesting. I wonder if blank and then I say that out loud, then they answer it. And then before you know what an hour goes by, but when you were saying it when you're talking, all I can think is, well, that doesn't make any sense. And that's not a good question to follow up. Sorry, I'm assuming it's not your fault. But but so what's the process you see of three, you've had three visits with your doctor now that you understand that this is probably your diagnosis. Yeah. But then the genetic tests come back. And you don't match Modi at all. But yet the treatments working?

Janae 48:17
Yeah, so what's this form of treatment? Because it's still not insulin or anything. It's that weird other solution that I'm injecting into my body, but for now, the next step? Because I was like, well, I really want to answer especially because I'm at the age where it's like, I don't know, in the future. I mean, I definitely want to leave the option for kids open and I need to know, you know, as much as I possibly can

Scott Benner 48:45
tell you a secret real quick. I'm, what 46 I've got two children, two dogs. If I didn't have kids, or dogs, my life would be amazing. I'm not saying they don't love kids and dogs, I'm saying that they take an incredible amount of effort and money to mean.

Unknown Speaker 49:01
And I know

Scott Benner 49:02
the income we had without children and dogs, I'd probably be a king. That's all I'm saying. You shouldn't go get children if you want them. I'm just saying there's times when they do stuff and you're like, this is what I gave up my life for. But I'm just saying I think

Janae 49:19
I can predict those thoughts going through my head.

Unknown Speaker 49:23
Be rational, I'm probably not the

Janae 49:24
most maternal figure out there. So

Scott Benner 49:29
I want you figuring out what the hell is going on with you before you do anything because

Unknown Speaker 49:33
oh, yeah,

Scott Benner 49:34
you because let me ask you a question. You're in your mid 20s. Right? You have a art degree so what is it you're doing with your art degree right now?

Janae 49:42
Um, I'm a but we're an accessories designer, though.

Scott Benner 49:46
So you already got your art degree?

Janae 49:48
Oh, yeah. Are myself quite well actually do special effects makeup on the side. So like the blood and guts and gore and weird thing for film and Music videos.

Scott Benner 50:01
My daughter, Arden is only 13 and a half. But she talks all the time about wanting to design clothes. That's really well that's what she seems cool. But we tried to buy her a sewing machine for Christmas. She could mess around. She's like, I don't know how to use a sewing machine. And I said, Well, that would be a good opportunity to learn. She's like, I don't think so.

Janae 50:22
The concept is she doesn't want to do it. I

Scott Benner 50:24
think she what she told me was she wants to she wants to be better at drawing so that she Yeah, design stuff better. That's what she said.

Janae 50:32
Yeah, people put a lot of emphasis on drawing. And a lot of cases for mining specifically, it's benefited me like in my career, but people don't necessarily need to be drilling either. But it is a great skill to have. I've always been pretty good on it.

Scott Benner 50:51
You were in Chicago, but you're not now you're in Ohio back in Ohio. Okay, yeah. And I felt like I needed a deep breath there. People may have other episodes I've had a head cold. So every once in a while I realized I'm using all the air in my body to talk and no other air is coming in because the hole of my nose appears to be

Janae 51:13
please breathe. I don't want you popping out. That'd be great. It will be very boring. Hello,

Scott Benner 51:19
I disagree. I think it would be completely compelling to hear you go Hello. Hello. nothing happening on the other

Unknown Speaker 51:26
side screaming the

Scott Benner 51:29
podcast guys dead hello

Unknown Speaker 51:33
everybody

Scott Benner 51:35
no one's listening. But But I So did you we have my God when you got the no markers for moody back. What was the next What? Did everybody just throw their hands up in the air go to lunch? Or was something said after that?

Janae 51:51
Ah, it was so frustrating to me because we have like a thing where you can email your doctor through like this app or whatever. And so I've she normally gets back pretty quickly and she did answers she's like keep do it. She asked me how my medicine was working and checked in to make sure like everything in about my levels with the Victoza because I hadn't talked to her at that point about it. Just kind of like going with the flow and pushing through the nausea and vomiting and stuff like they say to do. But I was just like, okay, so I don't know what this means. My boyfriend's like, well, you might be type two. And I'm like, this is the weirdest version of type two. And I don't mean to like discriminate or anything. But as a type one part living as a type one diabetic for so long. It was like I kind of I know, through talking through social media and stuff with other type one, like they kind of feel the same way. Sometimes, like people who have type two are kind of just frustrating because it's just not the same.

Scott Benner 52:50
And weird. These two diseases get stuck with similar names. And then people are trying to compare them there's no right or some with me. Well, I've

Janae 52:58
had people who have typed too. They're like, yeah, I have diabetes, too. And I'm like, it's not the same.

Scott Benner 53:08
At all.

Janae 53:09
Yeah. Oh my gosh, it's just so annoying. And like, you know, they get diagnosed when they're like 6070. And it's like, oh, wow, well, you got 6070 good years. are you complaining?

Unknown Speaker 53:20
I was just trying to drink some cranberry juice as a freshman in college. Thank you.

Janae 53:27
Excited to be holistic.

Scott Benner 53:28
I genuinely like not to go too far off the track. But I don't find any value in comparing anyone's struggle with anyone else's struggle like it just well. I'm gonna go to like, am I ever gonna say to you, oh, yeah, your stuffs worse than mine? Well, I think that quite seriously, like, whatever you got going on. Oh, that's pretty bad. It's your thing. You have to deal with it, you know? Yeah, like so to you. It's the worst thing in the world. And that completely makes sense to me.

Janae 53:56
Mm hmm. What I found was really encouraging was the beyond type one app I'd never heard about. I don't know if I heard about it through you or like on Instagram or something. Either way, I found that group and like, on there, I just feel like everyone it's not like a compare. Like, everyone kind of shares a story, but it's never in a comparing way. It's just like, Oh, yeah, I get it. Or like mine to just in a different way. It just feels like so relatable and not like we're allowed to share and we're allowed to vent. But it's also not just like, Whoa is me, you know, it's just like, yeah, like my sugar is super high. And it was like uncomfortable and it was super low, you know, or just something that you had to deal with.

Scott Benner 54:43
It's cool that you found that because I just I just interviewed Sarah Lucas from beyond type one yesterday. Oh, really? Yeah. Her episode will come out way before yours. But we're we were just talking about their DK awareness that they're trying to put into pediatrics and I'm on your Facebook Page looking at your makeup.

Unknown Speaker 55:01
Oh, exciting. It's

Unknown Speaker 55:03
really cool. No,

Unknown Speaker 55:04
creepy.

Unknown Speaker 55:06
There you go. Excellent. It's amazing. Thank you gotta get the Georgian I got the one go to Georgia where they filmed the walking dead. This is where you're

Janae 55:16
I know I've done them one local feature film is going to come out I think and then I'm about to work on another like independent film and I've done some music videos, the film scenes kind of like up and coming in Columbus. So we have really good tax situations where people get taxed a lot less if they come in town for business so appealing, okay,

Scott Benner 55:40
you're sick. It appears in some of these videos that you would also make a good doctor because you are willing to poker Yeah, things that look right.

Janae 55:46
Well, what's so interesting is I was totally gonna go into the medical field. And in high school, I trained to be an EMT basic, and got my phlebotomy license and wanted to be a surgeon or something. And then halfway through senior year, like I'm going to art school, just because I need to be selfish. And I know I'm weird and quirky and like want to look a certain way and not have to worry about people judging me and just want to be able to cast and be myself, you know, not just be so I don't know, appeal appeasing the patients and stuff in that way. But I do miss I do have a certain something in myself, that is always good. When I miss that

Scott Benner 56:31
moment don't know, maybe your doctors are looking at you and thing and what that eff is going on? And they just can't say it. Because it Do you feel we're so close to an hour? Do you feel like you're honest, like something like, do you think this doctor is moving you towards something?

Janae 56:47
I mean, considering that this is I've had four appointments now and I have another one already scheduled for two, three months from now. And the plan was she's going to research during those three months and hopefully have someone hopefully, that's willing to dive deeper on that she knows considering I've made this much progress and three visits, four visits compared to seven years of stagnant trying, trying, trying. And she's very motivated. And even if she doesn't know what I am, it seems like she's one of those people that needs an answer as well. She's like, she's not okay, for just being like, okay, you know,

Scott Benner 57:31
it is what it is, I have to tell you, I need you to follow up with me still. Because I mean, now that you can take the genetic tests and don't have the markers. I mean, maybe something happens, maybe people get false negatives or false positives or whatever. But I want please have to stay in touch and let me know what you find out as you go. Because, yeah, I'm never gonna sleep exactly right. I understand your story.

Janae 57:52
Me neither I fall asleep and wake up confused. Every day about life about myself, I'm like, what's going on is very injured, like weird, like eating, and knowing that I don't have to take insulin, but being like, what the heck is going on in my body, though? You know, like, how am I processing this? Like, how am I getting this point? Like, it bothers me. I'm not someone that I like need answers.

Scott Benner 58:21
I understand. Can I ask you in the last couple of minutes to try to separate two thoughts for a second, just want maybe you won't have an answer? And this is fine. But in a very, you know, it's not not exactly the case. But you sort of, you know what it's like to live with type one diabetes, and then it's gone now? And is can you put that into perspective? Like, is it life changing? Is it not as a big deal as you thought it would be? Like, where are you at? Like, as far as that means? That wasn't just said, but I'm just really genuinely interested. It's not like you woke up the next day and you were like, Oh, my God, this is amazing relief. I don't have Type One Diabetes anymore.

Janae 59:08
No, it honestly just feels kind of uneasy. And like I've there's been so many times like when I told my boyfriend this because he's been very involved. And he's fairly knowledgeable about diabetes since then his family and everything. And he's had to deal with me as a type one for a while. And he we just assumed that we were and then all of a sudden, I was like, well, she said this and blah, blah, blah. And he's just like, the day I stopped taking insulin, he's like, you don't have to take insulin anymore. Like, you look, he and like, I'll be like, Oh, my sugar is like 130. And he's like, Can you just appreciate that, like your sugar would have been 200 and you'd still have to take insulin and everything and he like, tries to encourage me and I'm still not. It's just like, Yeah, I don't know. I guess I just don't believe it like diabetes, like having type one diabetes. You don't want to put too you want to Celebrate the positive, you know, but you also you can't totally be like, woohoo, cuz nothing's ever consistent, like you learn not to be.

Scott Benner 1:00:10
Yeah. The other thing too is in eight years, it just occurs to me as you're talking like, you're part of the tribe now like, it's not me like, it's not like you don't completely understand living what you do and the downfalls of it, and the low blood sugars and all that, that goes with it. I would imagine that it's, I don't know, like, if everybody can't walk away from it, maybe it doesn't feel like you have like, like, you feel like survivor's guilt or something? I do. I mean,

Janae 1:00:38
I do. And actually, I told him, like, I just like, I feel like, kind of left out, like, I just feel like on the outside looking in to all these people that are dealing with something I'm so familiar with. But I just and I can relate, but not currently, in the same way. And I do I and you know, I was kind of excited listening to your podcast, I was like, hearing learning a lot about Dexcom and about Omnipod. And I was like, really interested in like getting those things going. And I was like, Oh, my gosh, I won't get to have anything like that. Not that that's something to be mad about. It's just like it was so it's just confusing, because I was like, I don't know, it's like an identity crisis, kind of.

Scott Benner 1:01:21
Seriously, I don't know. It feels like a good title for the episode. I'm confused. I just because you don't you're just it's almost like a like when we first decided to talk, that conversation would have been, I think interesting and, and probably complete. And now the conversations interesting, but it's, it's impossible to wrap up because you don't have enough answers. You have to wrap up the

Janae 1:01:49
crowd, like smack dab in the middle or right in the middle of Darden something,

Scott Benner 1:01:54
or you have to come back on then. That's fine.

Janae 1:01:57
Yeah. I do want to say though, that like, you know, I, I can't not say that I do feel extremely blessed and like, grateful. for, you know, what my body's capable of I will never say that, like I, you know, I don't want to rub it in or anything like that. But I'm not gonna take what I am given for granted. You know, it's almost like a second chance.

Scott Benner 1:02:23
You don't want to I don't want to give anybody the feeling like you're like, haha, sucker. I'm out of this.

Unknown Speaker 1:02:28
Yeah.

Scott Benner 1:02:30
Because you don't feel that way. And at the same, same time. I mean, I don't know enough about what is going on with you at the moment. But at the moment, it does sound better than having type one. So

Janae 1:02:42
right. Good for you. Definitely, I'll say a lot less than jack shins. And truthfully, throughout the day, it is night and day difference of like just worrying and being so attentive.

Scott Benner 1:02:53
Sure, sure. Yeah. There's there's just less opportunity. It sounds like for things to go. Yeah, emergency situation on you. Right. Which is a big part of that's a huge part of not doing not doing the worry around blood sugar's getting high if you don't do the insulin, right. I mean, listen, it's a huge, it's just

Janae 1:03:09
feeling better, you know, not having to just do a roller coaster.

Scott Benner 1:03:14
The whole time. You're talking though, I just keep thinking how you said your grandmother was your maternal grandmother was dying, right? She type one and then never lived with it after that.

Janae 1:03:22
Right. But that is actually one of the things like having three generations or something is like a sign for like a movie that you might have modius you have like three generations, I think. I don't know. There's something to that. Well, yeah. All right.

Scott Benner 1:03:38
So you gather all the information on this thing all the time, and then you come back and report the whole thing to me. But we have to make a deal right now that at the end of that next hour, we're going to have some sort of an understanding so that people can feel fulfilled, inclusion. Wow. Today, your life is wonky.

Janae 1:04:03
But, you know, I'm excited to be living.

Unknown Speaker 1:04:13
How can we find a picture of your shoes that you've designed? Why are they not there?

Janae 1:04:17
Oh, well, you could just go to Walmart or Target. Or any like warehouse club place. Yeah,

Unknown Speaker 1:04:23
no kidding.

Janae 1:04:24
I work. I work for dearfoams slippers. So we're known as the old lady slippers, but we actually do a lot more than that. Yeah, that's I do the little kids and like the novelty so like the critters. Anything with a thing on it.

Scott Benner 1:04:39
That's crazy. slippers in your house.

Janae 1:04:43
Oh, actually, yeah, but we only have sample sizes. So it's literally like seven eight for women's and like 910 for men.

Scott Benner 1:04:49
You have a lot of slippers that don't fit you in your house.

Janae 1:04:52
Oh, those don't fit me. I can't really give them to lay people up there. That's,

Scott Benner 1:04:57
that's great. That's really cool. It's very, I mean, get away from whatever I was gonna say get away from diabetes, but I don't know what Yeah, but to get away from the other thing from it, it's just neat to hear that you went to school for this very, you know, specific thing that I would think that most people are like, that's not a job. But you. Yeah, you made it into like a whole thing. That's amazing.

Janae 1:05:17
Well, my career, my path career path is interesting in itself. Hmm, I didn't really go to school. No, I went to school for illustration. So primarily drawing.

Scott Benner 1:05:28
Yeah, I know, a person who makes I think for the NHL, like every time the NHL comes out with new t shirts. The design, like a person I went to school with, sits in their house and makes them like, oh, dreams them up, and, and then adapts them to the different teams. And then they come. Yeah, that's it

Unknown Speaker 1:05:47
so interesting.

Scott Benner 1:05:48
It's just not what they expected. They'd be doing, I don't think Yeah, but

Janae 1:05:52
I don't think a lot of people I mean, you could say that for a lot of people. They went to school for one thing, or doing something else. I mean, that's why I have makeup on the side. I'm hoping to, you know, I'm, who knows where I'll be?

Scott Benner 1:06:05
I'm pretty sure if you would have told me I was gonna have a podcast when I was younger, I would have been like, I'm right. I don't think that's me. Exactly.

Janae 1:06:13
Like, I don't even know what that is exactly. even exists.

Scott Benner 1:06:16
I tried to tell somebody the other day that, um, you know, they said, Oh, you know, the podcast has been really helpful. And we'd spoke in person that kind of helped them hash out a couple of thoughts. And at the end, they were thanking me and I said, Look, you don't understand. I'm like, prior to diabetes. This wasn't me. Like you would never have looked at me Listen to me, known me and thought Scott's gonna take some of his free time to try to help people with their tight bond.

Unknown Speaker 1:06:41
Yeah, it's

Scott Benner 1:06:42
not, it's something about just the process of living with it. And our life. Just it just took me to a place where I thought I really should be doing this. And, yeah, you never know how you make those.

Janae 1:06:54
Well, you have things that have capability and stuff that a lot of people might not have to be able to verbally discuss it, you know, in a way that people are appreciated. Oh, you're very nice. And I always like to end the show with somebody complimenting me. So

Scott Benner 1:07:08
yeah. Just call it off right here. Janae I really appreciate you doing this. I genuinely don't know what it is. We did. Yeah, I think it's fascinating. And I think what's gonna happen is when this one goes up, I'm gonna hear back from a lot of people are like, Oh, my gosh, that mimics my life. And I'm maybe they'll have answers maybe for you. Yeah, you know, maybe for themselves. That's

Janae 1:07:30
what I'm hoping I'm just hoping that someone else who has something that they just don't feel right about, will figure out a way to find at least the steps towards an answer, especially if they have a doctor, you know, I don't mean to bad mouth, mouth doctor. He was great. But it's just, you know, you got to do what's right for you. And even if they say it's gonna be hard to find another doctor or something, you know. Alright, guys, do what you got to do. I

Scott Benner 1:07:55
think the after school special message of your of this last hour is that you can't give up and just have to keep pushing and advocating for yourself. Yeah, you know, so, if nothing else, I think people will take that away from it. So yeah, I'm gonna say thank you. Omnipod. Thank you. Dexcom. Thank you dancing for diabetes, good at dancing the number for diabetes.com go to my Omni pod.com forward slash juicebox. For going to dexcom.com forward slash juice box. Of course, there's links at Juicebox podcast.com. And in your show notes. And now Jenny's note. Oh, that's a Google Alert. I don't want that one. Not that I'm not filling out your form to see how I like it and J's that I've got it. Hey, Janae, I wanted to let you know that your episode is being released tomorrow. And I want to reach out to see if any updates. Hi, Scott. Awesome. This is very exciting. Thanks for the heads up. I'm now taking trulicity once a week, and using the freestyle Libra. I am very lucky. And both things seem to be going well so far. I also just found out that my doctor found another doctor that would like to do some research on me regarding my diagnosis. So this is also very exciting. I'm going to find out more in November. I hope all is well with you. Well, then I responded back and I was like, but what's your current diagnosis? And she said, it's still unknown. I'm being treated as a moody type two. So try to imagine that for a minute. Right now. It's September 2018. When I'm telling you that she just emailed me this, but Janae initially emailed me Janae initially emailed me in January of 2018. Imagine living like that all this time without a real firm diagnosis and understanding what you're doing. I mean, I'm Janae if you can hear me, I know you can't I know you're listening. I'm thrilled that you're doing better and that you're doing really well. But I'm rooting for you to have a real solid, firm answer. And I think everyone else Since listening is too so when you find out what's really happening, and you have, you know, a way to like explain it, contact me and come back on. I'd love to hear the rest of this. All right, I'm gonna get out of here but first thank you for all the recent iTunes reviews and ratings are very much appreciate those. And please, please remember if you're enjoying the podcast if you found it valuable if it's helped you in any way, please share it with someone else. It really is the way the podcast grows, and we continue to grow every day, every week, every month because of you. I don't have a budget to run, you know, ads on Facebook or, or you know, Instagram or anything like that. I don't, the show just doesn't make that kind of money. So I count on all of you to spread the word you do an amazing job. Just please keep going.


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