Scott Benner 7/1/22 Scott Benner 7/1/22

#711 Bold Beginnings: Terminology Part I

Scott Benner 6/30/22 Scott Benner 6/30/22

#710 Joanne Milo Wants Her Data

From Joanne:

Comment submissions are closed next Thursday (July 7th) so DO NOT WAIT to show your support.

Instructions:

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THAT'S IT! All in under 2 minutes!

Do you like continuous access to your CGM BG data so that your DIY Loop WORKS?! Do you know that we might lose that access with Dexcom G7 and Abbott Libre3 has never allowed access?

I NEED YOU TO ACT ... IT MATTERS!

Please join me in a letter-writing campaign to fill their inbox with our comments and concerns! NOW!

Suggested text:

"I live with insulin-requiring diabetes, an incurable chronic disease requiring continuous monitoring of blood glucose values and administration of insulin. It is imperative that access to my own devices remains possible. The ability to receive glucose values from my continuous glucose monitor and the ability to command my insulin pump to deliver insulin are already permitted and expected of me. In fact, if I don't do these, I will die. So please do not let medical device manufacturers use cybersecurity as a pretense to prevent me from accessing my own devices."

When you put your name (or even if you post anonymously) consider including ‘pwd’ or ‘t1d’ or however you identify yourself as someone with diabetes, I.e. ‘Sally Smith, T1D’ so that they know our community has a voice

You can see the comments that have already been submitted and approved: https://www.regulations.gov/docket/FDA-2021-D-1158/comments.

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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 everybody, this is Scott and this is episode 710 of the Juicebox Podcast. This episode was not planned, so I'm squeezing it in on a day where you don't usually get an episode. What you're about to hear is a quick little 30 minute conversation with a lady named Joanne Milo. Now you may know Joanne and you may not. But Joanne founded the Facebook group called loop and learn, as well as being a longtime type one and a longtime type one advocate. Joanne is here to talk about a notice that's been posted by the FDA. And it is open right now for public commenting. Actually, it's open until the seventh of July 2022 at 11:59pm Eastern Daylight Time. That's the last chance you have to make your voice heard. In short, this is about removing CGM from this document so that people living with diabetes don't lose access to their data. Joanne is going to spend a little bit of time explaining why she thinks this is so important. I'm going to tell you at the outset that I believe it's very important that I'm adding my name to the document and giving my reasons. If after listening to this quick conversation, you still need help putting into words why it's important for you. Joanne has written a sample letter that will be in the show notes of your podcast player and at juicebox podcast.com. But I'm quite certain that after the conversation, you'll be able to form your own thoughts and opinions. If you'd like to share those opinions with the FDA. There's also a link in the show notes, a link at juicebox podcast.com. And a link at the private and public Facebook pages where you can do that. There is no time. This needs to be done in the next couple of days. So if you are so moved, please get it completed before the seventh of July 11:59pm Eastern. This will be in my post online but they are Joanne's words. She says we want the FDA to listen to us. If our access to our CGM data is blocked. Innovation dies, I hope you're able to take the next 30 minutes to listen to the conversation that Joanne and I had to really absorb what we're talking about, and hopefully make your voice heard. The call to action here is to get the FDA to not consider CGM as part of this language. Is that Is that correct?

Joanne Milo 2:25
That's correct. They seem to be first of all, can you hear me? Okay, I'm using a headset now. Sounds terrific. Issue is an error clouding it under cybersecurity, that that the CGM companies do not have to release our access to our data, real time on our own devices. And but they can sell it to third parties. They can license it. And it's our data. And they don't have a right to block us. And I have the the laws that say that they can't. It's been enacted. It's it's called the 21st century cures, I think can't do what they're doing. But if they don't hear from us, they can do anything they want.

Scott Benner 3:07
How much of this do you think is just the FDA not knowing what they're doing and just throwing in every device that somebody could think of in a meeting to a pot and saying, Well, this stuff seems like it fits under this heading.

Joanne Milo 3:21
I think there's a tiny bit of that. I think they don't feel very comfortable in what they're doing. But they're also listening to the CGM manufacturers, we've had meetings. We have a small working group, and we've met with the director of diabetes devices with the FDA. We've met with two or three times with Dexcom on Jake leech, and Andy Bello. And we've asked both of them, will you be restricting access to our data of the g7? Dexcom? Just won't answer that. And it would be so easy to say no, we will not block your access. But they don't say that. And the FDA says we're not planning any legislation, which doesn't say they're not going to do this. And to say that it's cybersecurity is really not the issue is our data. It's our diabetes, it's our lives. And if you cut off our access, you also cut off innovation. The DIY community is what pushes development of new products. And if if we don't tell them what we need, and we don't go ahead and say this is what it is. There's very little effort that they're going to make because it just cost them more money on development. We do a lot of the upfront work and they need to listen and appreciate. I have heard Dr. Trang lie say that she does appreciate this community. We just need to make sure the access continues. And while the FDA says they listen to the community We haven't been sitting very much very loud. Right? Now we need to.

Scott Benner 5:05
So let's give people some context, because it's easy to say, if this happens loop won't work anymore. But, you know, I point out all the time. I mean, how many times is looping downloaded? Right? It's, I mean, it's amazing. But what are we talking about 20,000 times something like that?

Joanne Milo 5:24
Yes. In terms of the actual end users, right? Yeah, it's much less than the DIY community. And with more options with commercial systems, it probably will be less over time. But also, when you use a commercial system, you are also giving them access to your data and their partners, you know, the, the terms and conditions that we all just check off. But what that says is they have free rein to use their use the RS, our information, our data with their partners, whoever their partners choose to be, what if their insurance agency, what who do we don't know where it goes? We can't control that. But we can at least say give us our data.

Scott Benner 6:16
Yeah, join. I asked, because I'm trying to put myself in the position of I'm trying to say to myself, let's say I'm at the FDA, and I get 100 or 200, or 500 letters from people after people hear this? And they tell me, No, you can't do this. Here's why. And they give you a good solid reason. How hard is it going to be for me not understanding the world diabetes completely look up and say, Well, how many people have type one diabetes? And what are we getting 500 letters, because that's going to look like nothing. And and that's why I want to have the conversation with you. And while I'm happy to chime in about it. And so let me just say it for anybody that's listening. My daughter has had type one diabetes, and she has to she is 18 in a month. And on our way to college, we have been using a do it yourself algorithm called loop for maybe three years now. In that time, my daughter has suffered minimal, if not any dangerous lows. While her a one C has been better than most people walking around with a functioning pancreas. Her life is easier, it's better, it's healthier, in ways that I could go on for about for an hour in ways that people who don't understand diabetes don't even know exist, it helps her immensely. If you take her access away from that, you are going to raise her agency a point probably, you're going to make sure that her after meal spikes are now 200, not 140, you're going to make sure that she has more lows, you're going to take away flexibility. And I know there are retail systems, and I've used them, and I've seen them, and they are terrific. And for the vast majority of people living with diabetes, they're going to be an amazing improvement. But that doesn't mean just like Joanne said earlier that we shouldn't be pushing the envelope and we shouldn't be changing. And we shouldn't be changing how people work on these things. diabetes innovation in the past and in the recent past has gone so slowly that it was almost non existent. And then a small group of people pushed right with we're not waiting, and then it got faster. And that benefited companies that make CGM products. And now we have these retail systems. On the pod five we have Medtronic version, we have tandems version, and they're absolutely terrific. But there's going to be to Joanne's point, no reason for them to try harder if nobody's pushing them, and they're not going to push each other, and the FDA is not going to push them. And what I'm going to tell you right now that sets loop apart from every retail system I've seen so far is a user defined target blood sugar, and a more aggressive reaction to a rising blood sugar. Those are the two things that in my heart, make loop on another level. You absolutely agree. Yes. Right. So, so really think about what you're, if you're listening from the FDA right now, or from these companies or anything, what you're doing is going to take and raise people's agencies. It just is and I know you're doing a terrific job. But you got to keep doing that job, you got to go back to the FDA and say, hey, look, we made our algorithm we targeted 112 and a half, we need to be able to make this thing a target of 8090 100 We have to let people decide which is really what we're talking about right now is, you know, this thing exists in the world. The companies didn't make it. The the government didn't make it right. People made it people got together. I mean, think of how amazing that is. People got together wrote this algorithm. And it's amazing. Then they made it free. They didn't try to make money off of it. And they they keep it up. They they continue to make it better. It's really one of the more beautiful things I've ever seen in my life. And now we're seeing Hang? Well, we're going to restrict the data that comes from the CGM. And so this loop just won't work anymore. It'll it'll be functionalists. Without that access, and I agree with you. I don't see how this is a cybersecurity issue. And even if it is, I'm using it on my own. It's do it yourself. I've decided I bought a car, I put new wheels on it. That's on me. I put a new muffler on it. That's what I made. It's nobody's fault for didn't do it. I did it. Right. And so if I want to take this risk for my daughter, or if adults want to take this risk for their children, first of all, I'm going to tell you, it ain't much of a risk, because that thing works beautifully. But But if I want to do that, I that's got to be what America is really. i That's my decision. Right? And so, I don't know, but talk more about I'll go on forever. It get me all upset already. Joanne, we're 10 minutes into this. Okay,

Joanne Milo 10:51
well, I know. So it makes the FDA start to manage your own diabetes, or person with diabetes, I don't need their help. I don't want them as a partner in my medical care. There are more studies on the DIY loop systems and open APS than exist on any of the commercial systems. Because we've been studied so much because there was so much suspicion. There's way more data we do well, we are efficient, we create better outcomes, with no downside, no damage, no worse than any other system, because human beings run them. There are laws in place, the 21st Century Cures Act was enacted in 2016. To accelerate medical product development, and bring in new innovations and advances to patients. If you purely rely on commercials, commercial systems, going through the FDA and their process and their trials, what you get approved is four year old technology because it's taken that long for them to bring it to market. DIY is instantaneous, the pushes to updates are constant and immediate. We don't have to wait for the FDA if there's something that needs to be fixed gets fixed immediately. And there's no need to stop that. There's also the individual rights under our HIPAA access to health information, the individual's rights under HIPAA to health information that you cannot have your information restricted, right. So just it was passed in 2020.

Scott Benner 12:30
And it doesn't matter if that means on paper or digitally in the form of of live CGM data.

Joanne Milo 12:35
It's your necessary medical information. I consider my CGM and blood glucose information absolutely essential like a speedometer on a car. I gotta know how fast I'm going have brakes and accelerator?

Scott Benner 12:51
Well, I think you made a point there that I'd like to kind of tack on to, which is four or five years from now, the retail systems are going to work more like Luke does. But you lose a generation of people every time you take away options. So I'm going to tell you, I've interviewed 1000 People who have type one diabetes, and you get stuck wherever you start. So wherever you're diagnosed is the world you live in. And if you diagnose me 10 years ago, I started having outcomes based on the technology that existed then I get diagnosed 20 years ago, I have outcomes based on that. If I get diagnosed today, I have outcomes based on this. This podcast is incredibly popular because people want to take control of their health. And I'm not, you know, I'm not over here saying something crazy. I'm just telling them understand how insulin works. And one of the only ways to understand how insulin works is to watch it in real time the CGM have been they've moved us forward, you know, at a lightspeed type pace. But you're eventually going to get back to where you are now. Like, you're literally you're here already. Like instead of slowing it down and giving, you know, companies time to catch up? Why not just let things go at the pace they are? I think you're exactly right with what you said earlier, there's a small band of dedicated people who are out front blazing a trail, just like we did trying to go to the West Coast, you know, just like we did trying to go to the moon, we're out in front. These people are blazing the way they're taking the risk. They're really, I mean, they're doing you a grand favor.

Joanne Milo 14:28
Well, that's also the struggle we have, because the other mandate that the FDA has been given is to emphasize interoperability. So I can pick any CGM. I can pick any pump. It's my choice in any algorithm. It's our mandate to do interoperability and they, they are not doing that. So it's all this development. And just really, honestly, because you and I both know the folks in the innovation of DIY If we are blocked by the FDA and manufacturers, you know, these people will somehow break into this, it will take a while. And why would you throw more obstacles in our path? Isn't diabetes enough of an obstacle?

Scott Benner 15:15
Yeah, you make a good point, like, look, look at what we're really talking about here, right? Like somebody sat down one day with a CGM and their insulin pump. And they said, these two things are not designed to talk to each other. But I'm gonna make them talk to each other. And then they did. You're talking about brilliant people, these aren't five guys in the backyard trying to turn their lawnmower into a go kart. You know what I mean? And I can use the case of beer at the end for the seat, I believe. But but but these are brilliant people who love somebody who who uses insulin, or they use insulin themselves. They're trying to save their own lives. Right. And so I mean, your points just so valid. If you're the government, and you think there's a real cyber security risk here, if you really think that somebody is going to get it in their mind, to go into my daughter's CGM device and change her readings in a way that's going to hurt her. I mean, what are we talking about? How many times has that happened? Ever? You like who's doing that. But even if it happened once, you're saving 1000s 10s of 1000s of people's health. And, and these people took the risk, they said, I'm going to take this risk, they, whatever happens next is on them, it's about the most American thing I can think of, it's the least American thing I can think of is to step in and tell them, hey, you know what, you want to do better for yourself, you can't, we're gonna stop you. We're gonna save you from yourself. These people don't need to be saved, they've already done it. And they're making it better and better for more and more people.

Joanne Milo 16:51
And they're sharing it, they're making it absolutely open and available. They need to stop treating us people with diabetes as bad guys, we're not bad guys. We're just trying to live better and live through this disease. And the kids, we want the kids to have a better life.

Scott Benner 17:09
It can't be It can't be emphasized enough. That the way that things are, listen, I'm all for things being safe. I don't want anybody taking a drug or using a device that isn't safe. And I understand that slow and steady proves out. It probably is the way things are done. But at this point now, how old is loop? Right? Like it's been going on for a while now. And it's proving that moving at a faster rate is not being done by giving up safety, security or health. It's not like we're leaping forward. It's not like they put out a version of this thing. And 20 people are dead. And they go oh, well, you don't I mean, like it's it's incredibly safe. It's been validated over and over again, I I love my daughter more than anything on this planet. And I without blinking and I put her on this system, because of because of the validation that's gone through. And because of the the community that that comes right out and says, Look, here it is, this is what's happening. This is how it looks when I use this system. It's people being open and being honest, I trust what I'm seeing from people, as much as I would trust anything. You know, I don't understand it. Well, I want to understand Excuse me, what else this inspect it impacts beyond loop. Are there other things that this would stop from happening? Because I'm trying to think how do you get more people to write like, third, like, I don't know, like something like sugar pixel, for example, that little like clock that that gentleman makes that vibrates your bed and wakes you up in

Joanne Milo 18:44
class, it makes an amazing machine that also has variable alarms, because we do tend to get accustomed to the alarms and we don't hear them.

Scott Benner 18:53
That not work. If this happened,

Joanne Milo 18:55
it won't give live stream data. It will not loop file it will not get live stream data nets. Nightscout will not get live stream data if they walk it

Scott Benner 19:05
right now, a company like sugar mate could because they have they're in a business arrangement with Dexcom, for example,

Joanne Milo 19:12
correct right there on by tandem. So I'm sure they're grandfathered in to get to be a partner,

Scott Benner 19:19
right? But I'm not going to be able to call Dexcom up at Scott and say hey, I'd like to be I'd like to be a partner here so I can get my data in real time. So you're gonna have to be, you're gonna have to be part of it, you know, the people that they allow in.

Joanne Milo 19:30
Now, we've asked, we've asked Dexcom to give us a price. How much do I have to pay a year if I pay $25 a year? Can I have access? Can you give me a key? No answer

Scott Benner 19:42
here because that's what I was gonna say is it can't we just my my wife brought this up while we were talking. She's like, why can't they actually my son who doesn't have diabetes overheard the conversation. He goes, Why can't you just like, click a box or sign a waiver and say cool, let me have it anyway. I mean, listen, the easiest thing to do here And I think the best thing to do here is nothing. If if you're going to tell me that something has to happen, then there still has to be a pathway around that. I mean, this is all computers, right? Like there's if it's If This Then That like, so there's got to be a checkbox where you can say, Listen, whatever happens is on me click, I understand. I mean, we run the whole world that way, I signed a mortgage in a PDF document. I'm, I'm pretty sure I can, I can tell people I'm excited to use, you know, an algorithm on my own.

Joanne Milo 20:31
Oh, I've asked some of the the new commercial closed loop systems, could I take a test? And then you let me set my target range? Can I prove to you that I know what I'm doing. And then you let me manage my diabetes a little better with your I'll pay you for your machine. Not yet. Because they say the FDA, the FDA says them, I don't know who it is.

Scott Benner 20:55
But but I've said it to in many, many interviews, I talk about it this way. Say if you look at something called Adobe Elements, it's a, you know, it's a it's a program you get on your computer. There's a tab at the top Beginner, Intermediate. You know, you click you decide like and every tab you click on gives you more functionality. Because if you want listen, if you want to kill loop right now, that's all you have to do is you just have to make the existing algorithms user definable for target. And you have to make them user definable for how aggressively they're going to try to stop a rising blood sugar. It's all I'm sure they all do it.

Joanne Milo 21:37
Absolutely. And the FDA doesn't necessarily think well, how do I qualify people to be capable to do their own settings? And quite honestly, why would I let a lot of the endocrinologist do the settings because that's not what they do. They understand the big disease, but they don't understand the algorithms, they they are happy that then the commercial systems are out because it's not the responsibility anymore. They don't know it, and which is fine. But if we're willing to learn it, let us be,

Scott Benner 22:11
I want to reiterate, because I don't want to be blase about this. I'm gonna by name on the pod five control IQ, the thing that Medtronic has, for the vast majority of people living with diabetes, they are their Mecca, they're the most amazing thing that has ever existed on the planet, there are going to be people who have been walking around with eight 910 1112, a one sees, who are just suddenly and it's going to see magically be having an A one see in the sixes, it's going to save years off their life and health problems that it should not be, it should not be food. This it's an absolutely amazing thing. I think that every one of those companies deserves all the credit that comes along with this.

Joanne Milo 22:52
Those systems are remarkable. And I always tell my groups, diabetes, it's really hard. It is nonstop. It's unrelenting, it's dangerous. And you're 24 hours away from dead is constant. And if you want to kick back and let someone another device take over how wonderful, I'm considering the opening part five, just to really reduce the burden. But then I got a can't get the results. Why can't they let me do the results? That's all I'm asking. Yeah,

Scott Benner 23:25
I could even foresee someone hearing me say that. Or you say that go well, hey, listen, the ADA says sevens the target. So what are you worried about? And to that? I would respond, I would say, well, that's not up to you decide.

Joanne Milo 23:36
That's correct. Right. My body my data? Yeah, that's

Scott Benner 23:40
it. Just listen. For 20 years, this has been on the horizon. You know, data is not something we understood 20 years ago, how important it would be, it gets co opted along the way it keeps happening. It's going to keep happening. Like someone has to say something. I don't know that anybody listening to this, like, Listen, if you're hearing this, and you think I don't even use loop, or I don't know what sugar pixel is, or I don't care, you do care your killer eventually. And we're just asking people to reach out to the FDA, and explain to them that you need access to your data. And it can't be It can't be restricted.

Joanne Milo 24:19
And what I explained to when when the group members just said, Well, I don't use that, oh, I use a share. Why does this affect me? And that doesn't, she's happy. She's doing well. That's wonderful. But we do live in a community. We are a part of this world and we are part of the diabetes community, whether we like it or not. And if we want the next best thing that that goes after Cher, she won't get that if there's no innovation.

Scott Benner 24:45
Yeah, I don't. I would take umbrage with what you said it does impact them. They just don't know how and they can't see the pathway to it. It impacts them because at some point, when my daughter who's had diabetes since she's two is 30, and doesn't have any of the side effects that may come with type one diabetes, even at a seven a one C, people will take notice. And there'll be more and more innovation. And I'm telling you right now, it's every company is going to want, they're going to want people to be able to say, I want my blood sugar to be this, I want it to be this, I want it to be this, they're going to want it to happen safely, which of course should happen. But there's, there's not going to be an end to this. But you can slow it down by removing. By removing reasons why you would go faster with your innovation every time they go back to the FDA, it cost them money, it's not an easy process to go through the FDA, it's not a cheap process, it's not a quick process, nobody's excited to go through an FDA filing, they're just not. But if you put them in a position where they have to, well, then they have to. And if you put them in a position where they don't have to, then you're living in a world where my daughter was diagnosed, and it took four years for a meter to come out. That was slightly better than the meter at replaced. And and still was nowhere near accurate. That's the That's what happens when you block innovation, when you block innovation, that listen. I'm a, I'm an American, I'm a capitalist, I think people should get paid for what they do. I'm with it completely. But when somebody's making $1, and they have to spend 50 cents to make it, they're going to be less happy than if they're making $1 and have to spend 25 cents to make it and etc, etc. So if you if you have diabetes, or you use insulin, I don't care if you know what loop is, I don't care if you understand any of these words, this affects you or it will one day, one day meaning 10 years from now, when an insulin pump company hasn't put any honest effort into making the algorithm you're using better or the CGM you're using better or whatever it is you're using, like you need them to want to work for you. And I think, Joe and generally speaking, I know a lot of these people, and they're wonderful people. And I do think they want that for people. But I just think it's I think it's just it's a human thing. Like, why would I spend 50 cents to make $1 If I could spend 25 cents to make $1?

Joanne Milo 27:12
Absolutely, that's it. And in that that pie slice of most diabetics, or at least 40% of them, just don't want to deal with it, just make it work. Just give me less, I don't want to have to Bolus for foods. They exist there in the world, protect them. I think that's great. They will do better with the devices out there.

Scott Benner 27:37
And that is really everybody. Like it's statistically speaking. That's everyone, like you're really are. It's a weird situation right now. Because you're you're looking at millions of people and saying, I'm going to really focus on these 10,000 Over here, like like we're statistically insignificant.

Joanne Milo 27:58
I am so constantly filled with gratitude. Of these early innovators, they are regular people who just wanted their kids safer or wanted to be safer. And they have worked hard not getting paid, they work. They have a regular job. And then they do this in the evenings or weekends. And it's been an extraordinary effortless don't stop it.

Scott Benner 28:20
Yeah, no, no, I agree. And so if this goes through the way it's written up now and it's attached to it, then you're saying that when we get beyond Dexcom, G six, for example, like in my daughter set up, but that loop will just disappear for her in till someone comes along and puts the effort into hacking it, which I know is that sounds like a dirty word. But but it but what people are really, I mean, listen, I have hard drives on my desk that are connected to things they're not supposed to be connected to, I figured out how to do it, I technically hacked my hard drive to make it work. So if they put this blockade up, those people are going to double down, they're going to figure it out. And that's going to be it. I'd like to make it known so people can send in their letters.

Joanne Milo 29:05
Thank you very much appreciate that. But I included in your post on your on your Facebook group, they can go look at other comments that are made. See what people are saying what why they're saying this is important. It's they're very interesting posts, right?

Scott Benner 29:20
No, I wanted to record with you because I wanted to say why it's important to me. Yes, yeah. And it's it's important for clarity. It's important to me because it it keeps my daughter's a one C in a in a safe range in a in a in a quote unquote normal range. It makes her life easier. It takes away her psychological burdens, it takes away her physical burdens. It makes her life manageable, and not that the other ones won't, but they won't do it at the same level. And that's by design. Nobody can argue with that everybody has gotten together and decided that the target is going to be around 110 and that you know they're not going to be in credibly aggressive when When blood sugar has tried to go up? So you're going to see, you know, spikes? Are they better than people not understanding how to use insulin on their own by 1,000,000%? Like, if if you came to me right now and said, I have diabetes, I don't understand it, what would you do, I'd say go get an Omnipod five right now 100% Do that, I would tell 99% of people who asked me to do that, I would tell them, get a can get a tan, have control IQ, go get the Medtronic, one, go put these algorithms on yourself. They are amazing. This is not to denigrate any of these companies or any of these products, not from my perspective. I

Joanne Milo 30:36
know they're filling an amazing need. And, and they're easy. And that's what it should be for for mostly people that but you just need those extra people saying, let's figure out what else we need to figure out how to do it. That's all

Scott Benner 30:51
Yeah. And to tag on to your point from earlier, there's to make this thing is not it's not easy. It's not like I go on the App Store and touch give me an algorithm and do it yourself algorithm. It's you have to I mean, you have to become an Apple developer, you have to have a fairly expensive computer, you have to read tons of information to figure out how to do it, you have to agree and agree and agree over and over again that you know you're taking this risk on yourself. There's no ambiguity, ambiguity about it. While you're going this, there's no way you could trip and fall and by mistake, end up with a do it yourself algorithm on your insulin pump, as an insulin pump, you just it is not going to happen. You have to willfully make this happen for yourself, you are not saving anybody by blocking them. They these people are making this decision on their own. And even if they're even if they're confused, again, American all you know what I mean. So you get to do each one. So what do they do join, they go to a link, they write a letter, or there's a pre printed letter if they want, how does that work?

Joanne Milo 31:55
I included a suggested letter in the post on Juicebox Podcast, or they just write how they feel and just don't take away my access to my own blood glucose data. It can be that short. So they click on the click the link they go to there's a big box that says comments. Then it asks you whether you want to put your name down or be anonymous. And I think there's one other question, an email address. And I think they're just trying to validate people are real as they go, because they're looking at every single comment that comes in. And then you say Submit. If it's literally two minutes, you can write it up on on your computer, just copy and paste it into comments, then you'd be fine. Okay.

Scott Benner 32:44
So what I'll do is, I'll go I'll take the show notes of this episode. And I'll put your link in there and your, your boilerplate. And people can take a look at that for, you know, for for an example, and I'll have it so you just click on a link and it opens up. Exactly what Joanne's talking about. No, it's my pleasure. And it. It just I mean, at some point. I mean, just common every once in a while joining common sense has got to prevail, doesn't everyone? It just, I mean, how seriously how long has this been going on? Loop? How What's your I don't even know like what's

Joanne Milo 33:24
it started in 2014. I jumped in 2016. I started with Nightscout. In 2014. It's been going it took a leap to easier by 2018. And a lot of the effort in these support groups looping on as one the loop group is another. We're working on documentation to make sure you actually understand what you're doing and how to do it. Well, it's that's our that's our

Scott Benner 33:56
main goal. Right? So for eight years, this has been chugging along, and it's done all the things that it's done for people and it's done all the things it's done for the industry. And you know, and I just leave it alone. I mean, I guess that's my message, just like just leave it alone. Just yeah, it's nothing to do here. You know what they say? Every once in a while the best thing to do is nothing. Here we are. Here, here we are. Alright, is there anything else

Joanne Milo 34:23
you'd like to say? No, just great appreciation, Scott?

Scott Benner 34:27
Oh, of course. It really was my pleasure. If you're still with me, I hope you'll act. I'm going to read to you right now what you're going to find in the shownotes, the podcast player at juicebox podcast.com. And on both of my Facebook pages. These are Joanne's words, and the instructions that you'll need to make your voice heard with the FDA. Comment submissions are closed next Thursday July 7, so do not wait. Instructions. Tap on the link. The link will be there. Fill in the comment box with your message, select option device industry see 0012 Enter your email address where it asks for it. And it will ask you to tell about yourself. You can choose either an individual or anonymous. Then check the box that you have read and understood what you're doing. All you have to do after that is tap the green Submit button. Joanne says it takes fewer than two minutes. If you're having trouble knowing what the right, there will also be a link where you can see comments that have already been submitted and approved. That's it. I'm not telling you what to do. If you do this, I think it's wonderful if you don't, I understand. For me personally, I don't see much that's more important than access to our data, especially when we're making these kinds of huge life altering decisions with it moment by moment. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

Scott Benner 6/30/22 Scott Benner 6/30/22

#709 Not the Christmas Tree

Hannah has type 1 diabetes, a crazy diagnosis story and a number of other health issues.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 709 of the Juicebox Podcast.

Today's guest has type one diabetes, and has had it for quite some time, the way she was diagnosed is unique. She also has a lot more going on than just type one. Today's guest is Hannah, and she's here to tell us her story. 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 for becoming bold with insulin. Are you a US resident who has type one diabetes or is the caregiver of someone with type one? If you are, please take a moment to go to T one D exchange.org. Forward slash juicebox. Join the registry. Take the survey help people living with type one diabetes. easy questions to easy answers about type one diabetes await you at that link. When you answer you're supporting people with type one and the Juicebox Podcast T one D exchange.org. Forward slash juicebox.

This episode of The Juicebox Podcast is sponsored by Dexcom, makers of the Dexcom G six continuous glucose monitor. Learn more and get started today@dexcom.com forward slash juice box you may be eligible for a free 10 day trial of the Dexcom G six find out at my link. Today's biogas is also sponsored by the Contour Next One blood glucose meter. Contour next.com Ford slash juice box is where you're headed. When you get there. Everything you need to know about the Contour Next One will be right before your eyes. Contour next one.com forward slash juice box get the blood glucose meter that I just used five minutes ago.

Hannah 2:17
My name is Hannah and I am a type one diabetic.

Scott Benner 2:21
See? That was easy, wasn't it? Right? Are you futzing? Are you touching things with your hands?

Hannah 2:28
I was a little bit Yeah,

Scott Benner 2:29
hold it together. Okay. This is what it sounds like. Hi, I'm Hannah. And I'm like, and then there was that? And I was like, Oh, she's nervous already. Don't worry. It's gonna be okay. Hannah. How old were you and you're diagnosed?

Hannah 2:43
I was 20 months old.

Scott Benner 2:46
Oh, and how old are you now?

Hannah 2:48
I am 26. Wow.

Scott Benner 2:51
That was 24 years ago.

Hannah 2:53
Yeah, my diversity. My 25th diversity will be in the beginning of January.

Scott Benner 3:01
You were diagnosed around the holidays. Yes. So that's part of your story, isn't it? It is yeah. Stop. Stop. Hannah. Your her? Aren't you don't say why? But you are right. Right. You're Oh, oh, okay. This is exciting. Hold on, everyone. Calm down. And by everyone. I mean me. Hannah's gonna tell us something that no one's ever said on here before. And I'm gonna have a hard time not laughing when you tell me. Okay, I think I'm right about this. Am I right about this? Yes. Okay, let's go slow. Oh, no, I was so excited. See, this is the joy you get when you don't pre plan. Very true. 20 months old. Are you were you your parents only child or do you have brothers and sisters?

Hannah 3:52
I have four or three other sisters and then two brothers. And I'm the youngest.

Scott Benner 3:58
That's six children, right? Yes. Okay, so you're the youngest of six. And so did any of the other kids have diabetes?

Hannah 4:07
No, not at that time? No. Not at that time. By one of my older brothers was diagnosed near his 32nd birthday.

Scott Benner 4:18
Oh, interesting. Other side of the spectrum. Okay. So you're, you're 20 months old. Is that like, bottles? And I mean, you're titling right. You walk by 20 months?

Hannah 4:31
Yes, but still in diapers. And I think at that point, you're at your like sippy cups or whatever. Like, that sort of stuff.

Scott Benner 4:40
Okay. Hold on one second. My mom, hold on a second.

Sorry, my mom's not been feeling well. She's asking me a question and tell her I can call. Okay, so you're sippy modeling. and that kind of toggling around, but I'm imagining to the other five are in the house, right? It's not like your parents, like you weren't like an ops Baby, where are you like, there was a tight family of like six kids all near the same age.

Hannah 5:14
We're not all near the same age, my oldest is 14 years apart from me. But still, I was very much planned and everything like

Scott Benner 5:25
that. That's, I mean, it's a gap of time. But it's not. It's not to say that, you know what I mean? Like, you know, when you like your, your, you've got a six year old daughter, or brother or sister or something like that. Okay, so, all right. Go ahead. What did your parents tell you about this time? Because I'm assuming you don't remember it being 20 months old?

Hannah 5:45
No. So the other day I was at my parents house, and I brought a piece of paper and a pen. And I said, Tell me a little bit about my diagnosis story, just because I don't know much about that time. Besides the main events, which we'll get to later, that my dad was telling me that I kind of asked them, you know, when did you start noticing all the signs of diabetes, and they said, like, we didn't really know what to look for at that time. But my dad would tell me that he would give me a bath, he'd put me in a clean diaper, leave me downstairs to you know, do whatever toddlers do at that point, and then he'd come back downstairs and my diaper would be soaking, like there would not be any room for any more pee in there. In my parents called doctor said, you know, all these things are kind of happening. I was, would take a bath and I would drink this faucet water. Keep drinking it until like throughout. So I drink so much. And hanging on the door of the refrigerator asking for juice and water, anything to drink. And they just said it was a virus in my mind was like just a virus like, okay. You let me know what you want me to talk about main event? I could keep going?

Scott Benner 7:05
Oh, no, it's okay. So you're, you're you're thirsty. And and they're checking with doctors. They tell it's a virus. Nobody's anything. So I mean, go ahead. What's the thing that pushes your parents over the edge and makes them think wow, something has to be really wrong.

Hannah 7:20
So my parents, I believe, you know, just it was at nighttime, around Christmas time that there's a Christmas tree in our house. And a funny kind of like joke about it now is that my mom thought she had the healthiest tree. She was like this thing is drinking so much water. I have to keep refilling it over and over again. Like it is such a healthy tree. And then my parents found me one day drinking out of the Christmas tree water container like a dog because I was so thirsty. And then at that point, my parents are like, this is not just a virus.

Scott Benner 7:58
I can't tell if that's the saddest or funniest thing I've ever heard in my life. I just can't figure it out.

Hannah 8:05
I I am surprised that my toddler self that I was able to like MacGyver this way of getting water when my parents were like, no, like, you've already had so much juice and water that my 20 month old self was able to find a source of water for me to drink. It's just

Scott Benner 8:21
it's such a good example of the veracity of the feeling, right like because, I mean, you're just you're just this little like water seeking missile in your house. You know, you're if you're in the bathtub you drink in there. If you're at the you know, somebody nearby, you're like, hey, refrigerator, bring me something, you know, give me something to drink. And when all else fails, God Do you think you ever drank out of the toilet?

Hannah 8:46
I don't know. I probably not because we had cats. So I assumed that they kept the toilet seats closed. But I also had two brothers. They probably didn't put the toilet seat down. So I don't know. Let's

Scott Benner 8:58
let's not think about it. We'll just we just assumed. I mean, like I have a picture of you, like, you know, for people that don't bring trees in their house at Christmas time. I mean, you don't think about it, but they're like little spiders in them like pine needles are falling out of them pretty constantly. The waters really dirty by the time Christmas is over and you throw it away because those things are falling down into it. The tree soaking in it. And you're down there just like like finding a way to get the water out of there. That's crazy. Yeah, no, it really is crazy. It's like the worst Grinch story ever. Right? Yeah. So they I mean Did your dad have a remember to your mom I remember it's like going to the doctor and going like a she's drinking out of the Christmas tree.

Hannah 9:48
So my parents gave after that they gave a call to like the on call Doctor whoever at that time and the doctor said to bring them to children's and at that point It's childrens was like a decent drive away from us. My parents were like, do we really? You know, like, yes, we're gonna go. And then at that point they, I kind of asked them, you know, do you remember what my blood sugar was? Do you remember any my labs? Kind of that sort of objective piece? And they just said that they remember that my blood sugar was seven hundreds when I got there,

Scott Benner 10:23
wow. How long did they think it was going on for when when they look back in hindsight?

Hannah 10:29
See, I ask them that. And they, they don't quite remember. But they also don't really like they weren't really looking for anything. They just noticed that all of a sudden, you know, was having all these wet diapers I was, you know, wanting all this water and juice. And I was losing like weight. But my parents thought I was just going through a growth spurt. And that's why I wanted water. Why I was like losing weight because maybe I was growing taller. Getting a little leaner at that point,

Scott Benner 11:00
you have to imagine to like 14 years, you've raised five kids, this is the sixth one. Nothing major is gone wrong, right. There's no other health issues with your brothers and sisters or they're

Hannah 11:11
not at this point in my life in 1997, did any of them really have any health problems? Yeah,

Scott Benner 11:19
right. So your parents are just like, this is easy, like we have sex and then the kids get older, and it's fine. You know, like, there's there's not a lot for them to think about. And no reason to consider that something might be significantly wrong with you. Even I mean, the Christmas tree thing, though, is it's just, I don't know, let's it seems like another level in hindsight. You don't I mean? Alright, so 1997 Wow, that makes me feel terribly old. Life goes by goes by so quickly. Hi, don't don't don't undervalue that at all. Like, because try to imagine like, how old were your parents in 97? Ish. Do you think?

Hannah 11:55
Oh, boy. They're probably in there, like, mid to upper 30s. Okay, at that point.

Scott Benner 12:05
And now they're all

Hannah 12:06
my mom had me when I was 35. So she must have been, you know, 3637. My dad is a couple years younger.

Scott Benner 12:13
Gotcha. So now they're in their mid 50s. Upper 50s. Now. Yep, yeah, but just go so quick. Like in 97. Like I was, I just gotten married. Like, I was like such a young person. I'm sitting here. I'm 50 years old. And you and you're like, you know, back in 97. I was like, that was recently then I realized. It wasn't. And I'm almost dead. That's what I bet exactly what it made me think like, by the time you have a story like this about your younger children, I'll be gone. When you're sitting around, you're like, I remember when my kids were bah, bah, bah, it'd be like, and there used to be this guy on this podcast, but he's dead now. So anyway, all right. So what happens? Do they send them home with I mean, back then what are we talking about? Needles. Regular MP? Was it was it fast acting insulin, at least?

Hannah 13:04
No, my parents had to mix. They called it RNN. So I assume it was regular and NPH insulin. And they would have to mix it like, manually draw it up in the syringe. And then at that time, they told my parents of a 20 month old that you'd have to give the insulin 50 meds before they ate. So you first have to assume what I was going to eat at 20 months old. And then also like, give me the shot. And then have we sit down and eat like at that 15 minute mark when you know the peak of the insulin was occurring? Yeah. And me being a toddler. I didn't always eat my meals fully. And my parents would always say that say that I would say you know, all done. And they're like, you're not all done. You still have half your sandwich and half your yogurt. You are not all done. Then they would force me you know, to either eat that or the toddler if I said absolutely not. There give me frosting just to make sure it didn't go low.

Scott Benner 14:13
Yeah. Wow. That sucks. And there's no I mean, if so people are listening. There's no glucose monitors. Like continuous glucose monitors. Testing is probably even a little janky. Right? I mean, the meters are probably okay back then. But not not like they aren't now even.

Hannah 14:32
Right, Gary, remember is like this big, black and white back you check that you'd have to get so much blood onto the strip to like actually be able to get a reading.

Scott Benner 14:44
Yeah, so they're doing that. How often do you think they were doing that with you?

Hannah 14:49
Did they? I feel like at the time it was probably four or five times a day. And that's when my dad he started getting up at three in the morning, every single morning until I was 18. To check my blood sugar

Scott Benner 15:07
WoW is 18 when you move to a different insulin or when you

Hannah 15:12
had when I went to college, I had to do it by myself.

Scott Benner 15:15
Oh, he did it every day, every day. Oh, that's sweet. Okay. When did you switch to faster acting insulin

Hannah 15:25
so fast. So Lantus and fast acting insulin didn't happen until 2000. And they feel like Lantis they said, I pretty much started automatically on when it came out. It was like the new and latest technology to help keep blood sugar's you know, stable throughout the day. And my diabetes clinic at the time really pushed for that to be started right away. So I was probably in like preschool or kindergarten when I started that, and I believe I started fast acting probably right around the same time. Okay, but it was still needle like syringes.

Scott Benner 16:03
Yeah, ya know, for sure. What's your first memory of diabetes?

Hannah 16:12
Oh, that's a hard question. I remember going to like the office at school, when I was first grade ish, because there was another girl in my grade who also had diabetes. So at that point, we had a school nurse that had to go to like five different schools in the district. And my parents and the parents will this other type one diabetic, kind of got together and said, Hey, let's split the lunchtime shots. So I remember going to the office and having either my dad, my mom, are the parents of this other type one diabetic giving me shots for lunch?

Scott Benner 16:53
Oh, wow. Oh, that's a thoughtful way to split up the duty right?

Hannah 16:59
Yeah, my parents, I didn't last very long. Because they're like, liabilities, no, whatever, with insulin, which totally makes sense, you know, looking back on it, but it was kind of a good, easy way to do it. If they could do it that way.

Scott Benner 17:11
No, I was thinking like, I can't believe the school let like another person, like give insulin to like a third party's child.

Hannah 17:20
No. So my parents, yeah, my parents could still give me shots. But then they couldn't give the other type one diabetic. Her shots.

Scott Benner 17:28
So the splitting of duties chain didn't last too long. And then right there at the same time every day. Yep. Wow. Until what age? What time? Of what age? Do you start giving yourself insulin at school? Do you remember? I,

Hannah 17:44
I don't think they let me really do it by myself until I was in middle school. I was around fifth, fifth grade. Wow. But I started learning how to give my own shots. By the time I was eight. Gotcha. Because I was sick of my parents coming to school to get my own shots. So I really want to learn how to do it myself. Yeah, I would just remember, like, one day in the living room, my mom taught me how to do it. But I was so scared of doing my own shots, because I thought it's gonna hurt even though I knew it didn't hurt. I think it was just a new aspect that I was now doing it to myself versus my parents doing it?

Scott Benner 18:26
Well, gosh, it's so here's what's interesting is that you've had diabetes for so long. And yet you're so young. Right? You know, like, it's just, it's a weird juxtaposition. Like, it's hard to remember during the conversation that you've had it for such a long time, but your memories of it don't. Don't exist for as long as you've had it. Right. So you started doing your injections around fifth grade? That stopped them from coming to school? Yeah. But does it change when you go back home? Like, is it just you during the day and then they take back over again? Or did it just completely fall on to you at that point?

Hannah 19:05
No, I mean, I could have done it by myself, but I had a lot of issues with scar tissue. And I think between third and you know, seventh grade, I really liked going in the same like four spots. So my dad is like, well, I'll give you your breakfast shot. Like in my like, upper but kind of area so that I didn't get scar tissue. So it was kind of helping me rotate fights.

Scott Benner 19:34
Yeah. I think that's pretty common with little kids. They get it in their head that it like the needle goes in a certain place. And then eventually you kind of beat that area up a little bit so you don't have as much feeling there. And then going somewhere new feels like it hurts because right you have this deadened area that you've been using, but like you said that scar tissue just get like the the weird skin underneath you Even from there being too much insulin there, over and over, do you remember? Gosh, it's so funny.

Hannah 20:06
I remember going to the diabetes clinic and then being like, feels like you have some scar tissue could be like, lumpy. Yeah, I remember them describing it as lumpy. And they're like, if you feel that, that means that you're putting too much insulin there, and it's not getting fully absorbed. I was like, Yeah, I know. It's just I like the thoughts that I know. They don't hurt, you know?

Scott Benner 20:29
Yeah. No, I hear you. So how was your care through then do you did when you spoke with your parents? Do they have any? Any remembrance is like, how did they think about your health? I guess that's my question.

Hannah 20:41
It was different back then. I mean, there was no, like, I didn't get a pump until I was a sophomore in high school. So up until that point, I was on injections. And I didn't have a glucose sensor. Those weren't a thing either. So for the technology that I had, I felt like I did pretty good. I never was in DKA. Besides, like, I would have to go to the hospital. I remember when I was younger, when I get really sick with either like the stomach flu or a cold. And then I kind of lead into this point where like, you're almost IndieCade I've ketones on the P stick. And I have to go to you know the ER to get some fluids. But I felt like until I got the pump I was like pretty well controlled. Do I remember my eighth one seats from back then? I think it was like in the eights. But I don't think it was like considered like, terribly uncontrolled.

Scott Benner 21:40
Do you have like, a lot of memories about the hospital?

Hannah 21:46
I have memories of going to the diabetes. colic,

Scott Benner 21:49
okay. Not being hospitalized though. No, okay. Okay. So you alluded a couple of times about like later, there's other stuff. So do you have any other autoimmune issues?

Dexcom is a continuous glucose monitor, it measures your blood sugar, and reports it back on Dex comms receiver, or on an iPhone or an Android? What do you get to see the number of your blood sugar, say it's 120. The direction of your blood sugar, it's going up, it's going down. It's things stable, and the speed in which it's moving. And one of those directions is it moving it two points per minute, three, etc, and so on. Dexcom shows you all of this dexcom.com forward slash juicebox. When you get to the website, you have all kinds of options. You can read more about the Dexcom G six or you can jump right in and to your information and find out if you have coverage. Everything can happen right there on my link dexcom.com Ford slash juicebox. He could be a learning expedition, or a getting started kind of a day for you. If I was you, I would check out Dexcom very carefully. It is a pivotal part of how we manage my daughter's type one diabetes every day. Make knowledge your superpower with a Dexcom G six, when you get to that website. After you've all looked around if you haven't done anything on my browser, I don't know how yours works. But if I try to close the window, I hit the little x it says oh before you go, are you interested in a free Dexcom G six sample? Well, maybe I am DAX comm is offering you a 10 day trial that empowers you to make more informed decisions and deliver a new level of diabetes management request the sample right there. Terms and conditions of course apply. But there's only one way to find out for sure dexcom.com forward slash juicebox. Everyone using insulin has a blood glucose meter. But everyone using insulin doesn't have a great one. And sometimes they're not so accurate. Having that information be accurate as possible. And that's a pretty basic first step. And with a Contour Next One blood glucose meter, you are going to get accuracy, contour next.com forward slash juicebox. This is the meter that my daughter has been using for years now. The test strips are amazing. You get the little you put the little like the strip on the blood there. And if you don't get enough blood, no big deal. Strip still works. You can go back in and get more they call that second chance testing. When you get to my link contour next one.com forward slash juice box. There's a ton of stuff for you to learn. And as a matter of fact, I'm looking at this link right now. It's been updated like everybody's been busy updating their links. They've got some great customer feedback here right on the link amazing deal cheaper for me than buying through insurance, I got 50 more strips for about the same price. Expiration dates were good. Plus they arrived very quickly, very happy with the purchase. Same product works well and half the price of what I pay after insurance at the pharmacy will definitely buy again. Oh, these are walmart.com purchases of the meter and test strips. Oh, look at this. There's like a little Buy Now link here. You click on and it takes you Oh yeah, you can get it@walmart.com Amazon Walgreens all online right through my link. My link is amazing. CVS pharmacy, Rite Aid, target Kroger, and some stuff I can't pronounce. Contour next.com forward slash juice box. You need a great meter. You need to be reliable. You need to have a bright light and easy to read screen. You need it to be easy to carry. And the Contour Next One is all of those things. And bonus, it's really accurate contour next one.com forward slash juice box

Hannah 26:07
I do I have hypothyroid. And that started in sixth grade because my teacher found me falling asleep in class. And at first I thought I was blood sugar. Of course they're like is she low? Right? It's her blood sugar law. And it's like no, she's just really sleepy. And then I recently it was about three years ago, I was diagnosed with a form of like dysautonomia, which is autoimmune and they believe it's kind of related to diabetes, and it actually led me to getting a pacemaker on my 26th birthday this year.

Scott Benner 26:49
Wow, that's not a happy birthday. Hold on a second. Let's do this together dis. All right. A dysfunction of the nerves that regulate non voluntary body functions such as heart rate, blood pressure, and sweating. Is that right? Yes. Okay. How did that? Like present? What were your first so

Hannah 27:17
signs? Yeah, I remember in like college, it happened a couple of times where I wake up in the middle of the night, go the bathroom or whatever. And then I'd all sudden start feeling like tunnel visioned and kind of get like black spots. And then I'd either pass out or like near pass out. And I always thought it was like dehydration, or, I don't know, I was also in nursing school. So stress. And then one day, after I graduated, I was like at a bookstore, just minding my own business. And I felt it coming on. And I was like, You know what, I'll just like sit on the ground for a second. And then I remember waking up on the ground. That was pretty freaked out. So I was like, This has never happened to me in daylight before. Went to the ER at that point. And they sent me home sent me to a electrophysiologist to kind of get the diagnosis of dysautonomia. And then about maybe a couple weeks prior to the final incident that led me to get a pacemaker. I felt like a increase in these episodes, maybe not fully passing out, but just feeling like absolute crap. And just not feeling great. And then I was at work, where I kind of had these like pre syncope episodes before work, and I was like, I'm still gonna go to work, I'm fine. And then at work, I ended up having an episode where I, I ultimately fully passed out. And I I work as a nurse, so they're all like, you're gonna go to the ER and I said, No, no, I'm fine. I'll just go home. And then I called my doctor like, No, you really need to go the ER and I was like, Fine. Then I passed out again in the ER with monitors on and I had a 14 second pause my heart and they said that's way too long.

Scott Benner 29:14
So had to be serious for a second because we started off with you drinking out of a Christmas tree. This is this is serious condition, right? Yeah. Okay. Are you married? I have a fiance fiance give me kids. No, no. I mean, unless my readings way off here. And I'm not I'm gonna make sure I'm saying it correctly. This audit Tamia is that right? This autonomic close I saw that naamyaa Okay. It did they tell you you have a shortened life expectancy from this. No, they did not say that. Okay,

Hannah 29:52
no. They said like with the pacemaker that could there's like It kind of like a I don't want to say deadly heart rhythm because it's not per se deadly, but it's just hard to come out of. If you have too long of a pause in your heart that you can kind of go into this weird heart rhythm that sometimes takes a long time to get out of and can have long term effects. And I kind of asked this with the pacemaker when I was I was very upset. This was during COVID. Two. So it wasn't that long ago was about eight months ago. And I couldn't have visitors. I was in the hospital, all alone. And then they told me I'd have a pacemaker and I definitely just lost it. And then I asked that question. I was like, does this have, you know, do I have decreased life expectancy? And she's like, No, she goes, you'll have to get replacement pacemakers, but the Pacemakers more for your symptom management, keeping that heart rate under control. So that you don't have pauses like that and ultimately hurt yourself. And I was

Scott Benner 31:03
like, okay, has anyone ever said familial? No, no, okay, just why am I getting this wrong? This auditorium? Just say it again.

Hannah 31:14
It's a mouthful is ordinaria

Scott Benner 31:16
this autonomic okay, but nobody's ever said familiar. dysautonomia?

Hannah 31:21
No, okay. Okay.

Scott Benner 31:24
So, okay, well, so this all starts happening to you, you find that you have to have a pacemaker use a very upsetting, very upsetting because it was something related to your heart are very upsetting because you were getting something in your mind that's associated with older people, or because you've had enough in your life already. And you didn't think you needed one more thing, like were all that, like, tell me about being upset when you heard.

Hannah 31:47
I think it was mostly for the fact that this was I was literally told the day before my 26th birthday. And then I actually got the pacemaker my 26th birthday. So I was, you know, mad that I was there on my birthday. Like, why do I have to be here? Mad that it was? Yeah, like that this is meant for someone for someone that's 80 years old, not for someone that's 26 years old. This is stupid. And then I also would say, because there's been a lot of other, you know, medical things in my life, and that just to add this on top, it's like, felt unfair. It's just a lot.

Scott Benner 32:27
Yeah, yeah. So extended family being just your brothers and sisters, first other autoimmune stuff with them. I mean, we have one, one guy who got diabetes when he was 32. Is there anything else?

Hannah 32:44
All of are my same brother that has diabetes. And then two of my other sisters also have hypothyroid. My mom, and then my mom, sister, my mom's dad all have rheumatoid arthritis. My grandma on my dad's side has lupus and probably had undiagnosed rheumatoid arthritis. And my brother, my older brother who's closest to me, he has autism. But he also has an autoimmune disorder disorder called pandas, which is very rare. I'm not sure what the full acronym is anymore. But it caused him to get like IVIG whenever he would have a flare up of pandas ibig. It's a type of like immunotherapy. Oh, I say you have to give to help treat this. So I'll do my

Scott Benner 33:47
best here. Pandas is short for Python. This is embarrassing. Pediatric autoimmune neuro psychiatric disorder associated with streptococcal infections. Yes. Wow. actually did okay with that. That was actually pretty good. Yeah, I did. Okay. child may be diagnosed with pandas. When obsessive compulsive disorder, OCD tic disorder, we're both suddenly appear following a strep infection. Yep, that's what happened to your brother.

Hannah 34:24
Yep. So he already has like a form of OCD with his autism. But when he I mean, being in school, you're exposed to strep all the time. And when he would get this like infection, or if you would get like, be around a carrier of the infection. His like, OCD medications would not be effective, and he'd become like, overly obsessive compulsive

Scott Benner 34:51
I see. How does the arthritis present for your mom, for example.

Hannah 34:56
She has very bad feeds. Some hands and knees.

Scott Benner 35:04
Pain, swelling, the limit her movement like what is it all?

Hannah 35:13
Yeah, it's it's hard because she can't be on anything for her rheumatoid arthritis right now because she's had lots of allergic reactions to things in the past. But especially being in the cold, which we are five to six months of the time here in Wisconsin. She feels a lot of pain in our hands when it gets really cold in her feet. It's just hard to move around.

Scott Benner 35:37
I see that she can't take anything because she's having reactions to other people in your family. Are they getting relief from any medications?

Hannah 35:48
I don't know about my mom's sister. My mom's dad passed away about eight years ago. But I remember he was on some medications. I can't quite remember what they were. And he felt relief from them to an extent probably until near the end of his life where he was just kind of sore all over.

Scott Benner 36:11
What's your background? What's the makeup of your family, your where your parents families from?

Hannah 36:20
We are all from, like the southeastern Wisconsin area. My mom and dad are both kind of born near Milwaukee.

Scott Benner 36:31
Columbus back for that. Like where did their parents and grandparents come from?

Hannah 36:36
Hmm, my I know, my dad's grandparents that came from a small town up in Wisconsin. Probably. I'm trying to think of like a town near there. But it's very small. I mean, no, no.

Scott Benner 36:51
Give me a second because 100 people, I'm not being clear. So. So you guys are like couple of generations from Wisconsin. But before that, are you Irish? English? Nordic? Like that kind of thing?

Hannah 37:04
Yeah. So my mom's side of the family is very polish. And then my dad's side of the family is very, like very Irish.

Scott Benner 37:14
I love for some reason that you said very polish.

Hannah 37:18
I mean, very polish I last name is ski our ski all of that.

Scott Benner 37:25
They're very polish. Very. So. So ancestry from Poland and Ireland. Yes. Okay. Guys are like translucent white, I imagine can like hold a light up to you and see through you stuff like that.

Hannah 37:41
I think we come from, I don't know, quite the area of Poland to come from but I feel like I come somewhere with more power like olivey skin like yes, I'm very pale, especially right now. But I can kind of get that olive glow like that live by the sea or something.

Scott Benner 37:59
It's you're bragging. Okay, I gotcha. I just I you know, I'd like to hear from where people are coming from, especially in this situation, where there seems to be stuff on both sides of the family. And and it's I mean, it's pretty thick in your brothers and sisters. Is there anyone untouched in your brothers and sisters?

Hannah 38:17
Yes, my sister. Lucky he doesn't have anything.

Scott Benner 38:22
Is that her name? Lucky.

Hannah 38:25
Is this is my sister's name is Elise.

Scott Benner 38:27
Oh, I would bring him are lucky if I was you. So

Hannah 38:32
yeah, nothing.

Scott Benner 38:34
Wow. How old? Is she just for context?

Hannah 38:37
She is oh gosh. Yes. At 635. She is my brother who has type one diabetes. That's her twin

Scott Benner 38:46
twins. Yes. Interesting. So so there's this one person of your six of you that that just doesn't have any autoimmune issues? No. And she happens to be the twin of of your brother who does have type one. But yeah, crazy, isn't it? You guys feel cursed? Do you ever talk about it? Sometimes? Yeah, like good good. Does it like a serious conversations? You ever sit around and you're like Jesus, like what did we do? Did we piss someone off or something? Or? Right? Yeah. I mean, I would think it would be hard not to just want to, I don't know wallow in it for a minute once in a while. It's just it's so much like it really is a lot. Does your dad have like the greatest job in the world or like insurance wise, I guess?

Hannah 39:38
My dad he works in energy efficiency. I'm just saying. He had a very good job with very good insurance. He recently just retired. He's, I think you asked earlier if my parents were like in their late 50s They're actually both my dad is 6060 I think are going to Returning 60

Scott Benner 40:01
Okay, so your mom's 6364?

Hannah 40:04
My mom is yeah, like 62 I think I like that you

Scott Benner 40:07
don't know how old your parents are.

Hannah 40:08
I know I don't feel bad a year, but that I can't add it up in my head, like, I can't subtract and figure it out.

Scott Benner 40:16
I just heard you with your older sister. You're like, 86. She's 35. And I was like, 86 She's 35 What does that I was like, Oh, she you're thinking about, like, when she was born.

Hannah 40:24
I call it that diabetes saying math. Because anytime I was, you know, counting carbs, 3525 that's, you know, 50 or 60, whatever. And people were like, What are you even doing? I'm like, I'm just adding in my head. I said, just don't mind me.

Scott Benner 40:41
I don't know at 6035 is like one of the best sentences anybody's spoken to me ever. So that's it. Okay, so what is your Let's rank your issues. What is your hardest thing to deal with? Like what causes you the most concern?

Hannah 41:05
Maybe if you asked me six months ago, it would have been the dysautonomia, but now it's very much well controlled. I would say now it's the diabetes. And then the dishonor, Nami and then hypothyroid has been very well controlled with just my, you know, Synthroid in the morning, and it's never been an issue.

Scott Benner 41:28
Gotcha. Cold hands cold feet, do you have any joint pain or anything like that?

Hannah 41:33
I would just say, like cold feet. And then sometimes it would be like extra tired or just cold in general, but it's never anything where I'm like, oh, gosh, this needs to stop. And he's saying nothing like that. Yeah.

Scott Benner 41:55
Is this something that's generally spoken about? Or does everybody kind of quietly deal with their stuff?

Hannah 42:05
Like in my family? Yeah.

Scott Benner 42:07
We like yeah, like growing up, or even now. It's like, when you talk to somebody is that is the first thing you hear about is their arthritis, or their diabetes, or their where is it just kind of not spoken about us? It just kind of like drifted into the background.

Hannah 42:22
We definitely speak about it. But it's not like, maybe it comes from when I was younger, my parents did everything in their power to make sure I had a normal life that I could do whatever I wanted. So it's like, yeah, it's like, oh, yeah, how's your diabetes, but you know, whatever. But it's never like a full topic of conversation. So it's definitely there. But it's not doesn't, you know, dominate the conversation.

Scott Benner 42:52
How did your dad do with giving, like going from like waking up every day at 3am? To you go into college? How did he do was able to disconnect from it? Or did he stay more? I don't know, involved while you were at school.

Hannah 43:07
So they they stayed involved? They definitely were very nervous. Or didn't go very far. I wanted to be in the dorms. That was like my number one thing, because I wanted the full college experience and being my parents that they were wanting me to do anything that I, you know, wanted to an extent. They're like, yeah, we'll do this. But this is kind of the guidelines. And for the first, I was in a trimester school. So we went 10 Weeks was like our semesters. And every Sunday for the first trimester, I would go back home, I did not have a sensor. When I went to school, I had a pump, but no sensor. We would, I would have to log my numbers at school. And then we'd go, I would go on Sunday and talk about like, my numbers with my parents and figure out like, Oh, do we need to change some things? We go back this week, or it looks like you're doing really good, or, Hey, you didn't wake up at 3am this one day, like what happened?

Scott Benner 44:08
3am What is 3am? It's just a time your dad figured that thing needed to be looked at?

Hannah 44:15
Yeah, I guess so. I thought he just figured that like, oh, sometime in the middle of the night and 3am just sounded like a good time.

Scott Benner 44:23
Gotcha. Okay, that's kind of what I thought I just wanted to make sure there was no magic witching hour that I knew that I wasn't sure. It's just the time that he kind of settled in with and thought Yeah, okay. How did you find? How do you? I mean, you're nursing now, is that correct? Correct. Right. So how did you find adjusting to that leaving college or was it not much of adjustment?

Hannah 44:46
It wasn't a adjustment just because I worked 12 hour shifts, three days a week, but it was day shift. So it was 7am to 7pm. So just seem wise like on my days off, sometimes it was hard to figure out if I needed more insulin on my days off, if I needed less insulin, I was waking up at different times on my days off, you know, sometimes I would sleep a lot because I was exhausted. So it's kind of trying to figure that out. And then in my current job, is, it was a little bit more of an adjustment, because my hours at my current job are 3pm to 3am.

Scott Benner 45:30
I mean, oh.

Hannah 45:34
So that's a whole different animal.

Scott Benner 45:38
Yeah, I can't imagine like leaving work at three in the morning.

Hannah 45:43
I've adjusted it's, it's fine. Because it's, it's still dark outside. So like, when I get home? It's easy for me to just fall asleep. Because dark out?

Scott Benner 45:53
Is there any aspect of your life that led you to nursing?

Hannah 46:00
The diabetes, for sure. I knew from the time I was like, seven or eight, that I knew exactly what I wanted to do. I had a nurse practitioner at the diabetes clinic, who is still my mentor to to this day. And I want to be just like her, I was like, I want to be just like, you know, this nurse practitioner. And so I'm currently in nurse practitioner school. I just started plans to, you know, kind of fulfill the dream,

Scott Benner 46:37
so to speak. I didn't know that. Is that consider grad school? Yes. Okay. How long will you be doing that for until you're on the other side of this and ready to work?

Hannah 46:48
Right. So I am doing a part time. So that can still do part time work. So it'll be four years by the time I'm done.

Scott Benner 46:56
Wow, we'd be able to stay at the same institution. Do you think

Hannah 47:00
that is the hope? Yes. Okay. You're not

Scott Benner 47:03
leaving Wisconsin, even though it's super cold. And it makes sense to least

Hannah 47:07
I, you know, I can't say Never say never. But just having family and friends so close. That's like, one of the main things that I love is that all of them are really, really close. So it'd be hard to leave.

Scott Benner 47:23
Here. I just, I mean, I walked outside today, Hannah. I'll do I'll just have to like edit this later. And this is New Jersey. And it's only December and I walked outside. And I would thought this this is exactly when through my head. It's so cold. I think I would die in Wisconsin. I just was

Hannah 47:41
five degrees yesterday. So that was really fun.

Scott Benner 47:45
Oh, my God. I see. Now if that happened, I assume everyone just stays in their house and doesn't move. But that's not what happens. Everybody just gets up and lives right?

Hannah 47:53
Yep. Let's see you put on your layers and you get on with your day. No,

Scott Benner 47:59
no, I wouldn't. I'd call out. I'd be like, I can't come today. I don't know if you noticed it's five degrees outside. Just again tomorrow. Is it like one of those days where I mean this the heater? They just run constantly. Just

Hannah 48:13
pretty much and I'm like just looking at myself. I'm like, Oh, this electric bill, but whatever. I'm not gonna be cold in my house.

Scott Benner 48:21
Oh, gosh, I wouldn't be good at it. Like my body. The cold hits me. And my body tenses up. And I'm just like, oh, no, no, no, it's cold. And then I just start immediately thinking about when spring is coming. I'll spend like the next three months just wondering when spring will be here. Right? Yeah. No, I don't understand. Okay, you guys getting married?

Unknown Speaker 48:43
We are Yes. Is that soonish?

Hannah 48:49
We're thinking we just got engaged a couple of months ago. So probably 2023 In the summer, is because we want to get married, you know, downtown and everything is pretty much blocked unless you want like a Sunday brunch wedding. Everything is blocked for 2022.

Scott Benner 49:08
Yeah, that's still COVID Like because everybody pushed right? Like, yes, yeah, my my son's friend just got married like the day before Thanksgiving, which is not a day you would normally get married? Yeah, yeah. Different. And it just, it's when they could, because they were supposed to get married like a year and a half ago. Right. And they weren't able to. Have you ever had COVID? No. Okay. I was just asking because you had an illness arrived during it. So I just wanted to ask, right? Is there anything I'm not asking you because you have such a very thing that I'm just following the course of my ideas, but I don't know if I'm missing anything.

Hannah 49:49
I don't know either. I I wrote down a lot of notes when I was with my parents, but mostly because I was like, Oh, I don't want to forget anything. Oh, Um Oh, my, this is grown up. It's like funny, but my dad has like a death leaf fear of needles.

Scott Benner 50:10
It's pretty funny.

Hannah 50:12
He would pass out like he like gets all pale and then passes out. No, really? Yeah. So like when he my brother. I don't know if this is genetic. I know it's not autoimmune but four of my siblings, and I had scoliosis. Three of them had to have surgery and then I had the lovely back brace. So add that on top of diabetes and hypothyroid. I also had a back brace.

Scott Benner 50:44
How long were the back brace for two and a half years? No kidding.

Hannah 50:49
You know in high school. Yeah.

Scott Benner 50:51
While we're talking I just picked around here and I found you online. You're tiny person to write? Yes. Yeah. I mean, unless this boyfriend here is just like five feet tall. Like you're pretty small. Yeah. Okay. So cute. This little tiny kid with a back brace on? Yep. Did you have any friends at all? Or how did that go?

Hannah 51:09
I did. Yes. Good. But I had to get it within two weeks of starting high school, my back race. So

Scott Benner 51:16
I was Oh, no kidding.

Hannah 51:18
I was about as mad as I was when I heard about the pacemaker. I was about that much livid.

Scott Benner 51:24
Yeah. Yeah, I think I would I think I can see exactly where you're coming from. Like, wait, I'm going to high school and I need to what? Stop

Hannah 51:31
it. Yeah. I think my mom could tell I was just like, super angry about it. And she was like, we're gonna go to the mall, we're gonna get you a bunch of flowy things to wear. So people don't have to see it if you don't want to. Right. And so I probably wore flowy you know, whatever people were in the early 2000s.

Scott Benner 51:51
This brings up a good question, honestly, because you seem very pleasant. So are you hiding it? Or are you okay?

Hannah 51:59
Oh, I'm okay. Why? Why?

Scott Benner 52:04
How? Maybe?

Hannah 52:05
Oh, I guess? I don't know. I feel. I feel like I've always been a very positive person. I feel like I don't know how to explain it. There's things there are worse things that could happen. There are worse things that I could be angry about. And it's like, yeah, like this back brace is super irritating. And it's itchy. And I hate going to gym and then putting my back brace back on. But at least you know I'm here I can walk. I have very much like that outlook on life like I could be a lot worse. And this is such a small thing in the grand scheme of

Scott Benner 52:47
whatever the back brace actually correct the scoliosis?

Hannah 52:51
It did for me because I beat a diabetic. I've already very disciplined because myself you wear that damn brace. Yeah, so I wore that day because I was not going to have surgery. So I worked 20 hours a day for I think two years and then the last like, half a year. I got to only wear like for 10 hours. So I would just wear it wear it when I was at home and like when I would sleep.

Scott Benner 53:18
Wow. That's shook me for some reason. The the 20 hours a day for two years thing. Yeah. Oh, gosh. That's a lot.

Hannah 53:26
I wore it.

Scott Benner 53:29
Did you did you wear the mouth? Did you go through multiple ones?

Hannah 53:33
I can't remember. I think we got maybe had two of them.

Scott Benner 53:38
Okay, well, did you just look away from the microphone? Or were having a problem? You went away for a second? I can't hear your voice. Oh, can you hear me? Yeah, you don't remember? You might? Yeah, I

Hannah 53:49
did turn away I think so. Did it smell probably they gave us these like weird cotton tees to wear underneath. And what it was like thick cotton. And it kept like all the sweat in and it was really gross.

Scott Benner 54:07
Tell me about your dating life during this two years? No, I

Unknown Speaker 54:11
didn't. Yeah,

Scott Benner 54:12
I was just gonna say like, Well wait on that. I mean, you're a little young but still like you're probably like yeah, maybe people in the brace is gone. That's bring me to a question. You're young person. You know, you're pretty recently engaged. When you find out about the pacemaker, and this next issue, is there any point where you look at your, your boyfriend, your fiance and think I can't keep telling him there are things wrong with me? Like because at one point like, are you worried that somebody's just gonna bail on you? Or does that not come into your head?

Hannah 54:47
It definitely doesn't come in my head. He's the type of person so you remember how I said I'm very polish or like my dad, my mom's side is very polished. Key is like very, very, very Very polish like he speaks Polish. So despite I found him so being very polish and Eastern European, he's very I don't know if reserved is the right word, but he's very calm, which I think helps with my net calmness. So anything that comes up with diabetes, my health, whatever he's like, alright, we'll just make it work, we'll keep doing what we need to do you know, do you need anything? What can I do? And that's kind of the person that I need is someone that knows how big of a deal things are like when things happen, but doesn't get all anxious and is like, oh my gosh, where's this? Where's that? What do we need to do? Because that would just add to my anxiety that I don't need.

Scott Benner 55:48
Yeah, no, I understand. I just, I mean, you know, there's, there's people in this world who would hear you know, one thing and be like, Okay, two things go, I don't know. And you start getting to like, I'm getting a pacemaker when I'm 26. And you can see where people might think like, some people might say, I don't want to be involved in this like, I love you, but I can't do this. But he's, he's steadfast. He. He's steady, right? Yes. Yeah. Good for you. That's cool. Good for him too, by the way, because you guys are young, you know? Yep. Probably don't feel young. But you're so

Hannah 56:22
yeah, we've been together for eight years. We started dating when I first got to college, when we both first got to college.

Scott Benner 56:31
I was gonna say when the back brace came off, but

Hannah 56:34
the back brace was no longer the picture.

Scott Benner 56:37
Like my spine is straight. Find me a boy. Since you have older siblings, are there any grandchildren for your parents?

Hannah 56:48
Yes, I have two nieces and a nephew. And they are my pride and joys they are. The two nieces are very close in age. They're four and a half and the other ones almost five. And then my nephew is nine, it was 20. He's 21 months.

Scott Benner 57:09
Is there any autoimmune with them yet? No, no? Nothing. Okay. Do you think it's something everybody's like? Thinking about? Yes. Right? I would start one of those like you ever seen those days without injury at work calendars. If I'd have like a days without auto immune calendar at my house, I'd like put a line on it every day like, Oh, my God, we're winning. Right? You because everything about your family history says that this could happen at any time at any level of degree of you know, like you were to your brothers in his 30s Like, so. There's no feeling that you're I mean, not that it's not that there's anything, you know, that's real about that idea. But, you know, you get it in your head, like if everybody was diagnosed when they were 10 by the time you were 20. And think you got you got past that, you know, that kind of thing. Right? There's no feeling there for you because it happened to somebody between two and in their 30s.

Hannah 58:08
Right. All right.

Scott Benner 58:09
I don't want to bum you out. You are really up. How did you find this podcast? And why do you listen to it?

Hannah 58:17
So COVID hits, march 2020, march 2020, I was getting canceled all the time at work, because no one wanted to come to the ER. Because, you know, COVID is everywhere. So I was maybe working one day a week, like 112 hour shift. So I was like, I need something to do. And I don't know if someone mentioned it on Instagram, or if I just looked up diabetes podcasts on the internet and then saw yours. And I was like, I've never really been into podcasts. But let's just see, let's just see what this is about. And I started listening at one point and it was someone's story. And I was like, wow, like this is actually kind of cool to listen to other diabetic stories and like how they were diagnosed and how they're doing now. And then I kind of found your pro tips. So I was like maybe my diabetes could be a little bit better. Maybe that will be my COVID project just to get my a one C below you know, a certain level. So I was like, let's do the diabetes pro tips. And listen, a couple of those learned about like the Pre-Bolus thing and I being bold with insulin. I was like, Okay, this is odd because I have an endocrine who is very lovely. I do really like him but he's very you're gonna laugh You're gonna laugh so hard again. He's very, very polish. So also very like, alright, this is what we're doing. Let me grab your pomp. I'm changing this and then I will see you in three months. Like that sort of thing. Yeah,

Scott Benner 59:58
I don't know me i By the way, I still don't have any context for context for very, very, very polished. But it's so close to being the episode title. Because it means something to you that it doesn't mean to me. And so I'm trying to figure out, I don't think I'm going to actually figure out what it is. But, but what Alright, so just, what about being Polish? What's that description? Of? They're just like, alright, here make it stuckness is it just that stoic

Hannah 1:00:28
but just like very blunt to the point? Is that like, Eastern Europeans are just very, like a very special breed. Like, I don't know how to describe them.

Scott Benner 1:00:41
No, it feels like something you heard growing up, and that it resonates with you?

Hannah 1:00:46
Yeah, I don't know. I just don't.

Scott Benner 1:00:49
I just I'm delighted by it. I've never thought of myself as although I'm adopted. So I don't really know what I am. But I've done. I've done like ancestry or anything. Yeah, I did. I think I'm mostly Italian. Okay. So, I don't know, though, when I do something that's very, very me. I don't think of it as being very, very. Whatever it is. I mean, honestly, that test could be completely wrong. I only paid $100 for it. Who knows how legitimate you know? But okay, no, I mean, I don't have a problem with it. It's just very interesting. So you had this kind of set it and forget it. They were like, Alright, try this. Are you willing to tell me where your agency was before you found the podcast? You don't have to if you don't want to? Cool? It was probably

Unknown Speaker 1:01:31
like

Hannah 1:01:34
maybe 7.6 7.8. Okay. And now maybe something like that's nothing terrible. In my last a once you have 6.9, so it's nice. Still trending in the right direction.

Unknown Speaker 1:01:52
I had some hiccups with.

Hannah 1:01:56
I also had like major jaw surgery.

Scott Benner 1:01:59
Well, of course, you. Wait, oh, what happened?

Unknown Speaker 1:02:05
I had to eat pureed foods for six weeks. What happened to your jaw?

Hannah 1:02:11
I had just like, must be genetic.

Scott Benner 1:02:14
I think everything I want to say I think everything with you is genetic. But what does it

Hannah 1:02:19
say? Like I don't know how I was like, it didn't come from anything. It's just like, something I knew that had to be done since I was 18. And I just kept putting it off. And then finally I said after I graduated nursing school, I said fine, I'll actually go through with all this stuff. So I had to be in braces for a certain amount of time and then had to get my wisdom teeth out. Then I had the surgery where they had to like, you know, put my upper jaw then a break it and then put it back into place basically. And so then I was on pureed foods for six weeks. So that was quite a challenge with diabetes and being like mostly everything that it could be pureed and had carbs, it just a lot of it.

Scott Benner 1:03:04
Yeah. Were you working during those six weeks, or were you at home?

Hannah 1:03:08
I got to be off for like three to half weeks. And then I went back to work. The other three weeks are all wired shut. No, my jaw had a splint in it. It was not wired shut, but I had like a splint just to keep the mouth together on the top I guess. But that came out at like two and a half weeks.

Scott Benner 1:03:30
Okay. Wow. Sir, any other weird stuff that's happened to you that we haven't talked about?

Unknown Speaker 1:03:39
Um, I think that's it. I

Scott Benner 1:03:42
think that's it. You're not sure, though, right.

Hannah 1:03:45
I'm not quite sure. But I think that's pretty much the extent of everything. Yeah. diabetes, the brace. Surgery, the pacemaker.

Scott Benner 1:03:55
Your breasts are like on the front and everything like You're like the Okay.

Hannah 1:04:01
breaking a bone. Besides my jaw that had to be broken

Scott Benner 1:04:05
to five toes on each foot. They point forward? Yes. Yeah. All right. Jesus. Do you worry about having kids? Seriously? A little? Yeah. Yeah. All right. I mean, I mean, I would if I was you. Yeah. Like,

Hannah 1:04:21
we'll definitely have to do like some genetic testing and figure all that out. But we never put off adoption, like adoptions always been on the table for us to think about so.

Scott Benner 1:04:34
Yeah, yeah. Maybe you could adopt, like a very, very, very, like, I don't know, Australian kid or something like that. Or? Yeah. I mean, I'm being like, I'm joking. Because, I mean, it's a lot of stuff. And you have such a good way about you. But, I mean, you gotta think right, you have a kid. Something is gonna be up. Right now. ate? And do and I guess my question is, is had has this been enough for you to deal with? That it feels like something you wouldn't want someone else to have to deal with? Or does it not feel that way to you?

Hannah 1:05:13
I don't think it feels that way to me. I don't know why. Cuz if I say that to a person is like, wow, that's a lot of like, yeah. So, but it's okay. So here. Yeah, I'm still walking. I still have my mind. I can still work. You know, I can do all the things,

Scott Benner 1:05:34
right. I don't want to be on New Agey, but it's your thing. And it's everybody has the thing, and this stuff has been yours. And you're still going and so it doesn't seem like impossible to you. It's just it wasn't. I mean, I guess the way you would hope for it to be, but right when it's happening to you, you don't I guess you don't miss a different life. Right? Because this is yours. Right. Okay. That makes sense to you?

Unknown Speaker 1:06:00
Yes. All right. Yeah.

Scott Benner 1:06:01
I don't know. I was just interested. Because I feel like if we just keep talking, I'm going to learn that your toenails grow on the bottom of your feet or something like that. You know, some right? Yeah. I mean, do you? Do you ever take advantage of your job? Like, you must be able to, like talk to people be like, Hey, we just run some symptoms by your brother. What kind of nursing do you do?

Hannah 1:06:23
I'm a pediatric emergency room nurse.

Scott Benner 1:06:25
Oh, okay. Yeah, that's got nothing to do with you anymore, then. It's a stressful job. Or sad?

Hannah 1:06:33
Um, it can be? It kind of depends. It depends. Yeah, it depends on the day, and kind of where I am. And in the ER, and everything. And recently, there's been a lot that has happened. But overall, my coworkers are very supportive. And we always talk about stuff and just say, you know, hey, this was a really hard case, or Yeah, you know, hey, like, I'm still having, I'm struggling with this file that took care of or whatever. But for the most part, I feel okay. About It, emotionally and everything. But

Scott Benner 1:07:17
yeah, there's somebody that works at pick you and they said, it can be overwhelming sometimes. So yeah, yeah. Okay. All right. Listen, I think we're gonna stop just because I mean, you're out of maladies to talk about. So.

I guess just let me finish by asking you like what made you want to come on the podcast?

Hannah 1:07:44
I think just to show that, like, you can have all these ailments solve these things. And you can still live a very positive life and taking care of yourself as your health is your number one investment and just keep working on that. And you can be the pediatric er, nurse. Or you can be the person that has a fiancee and a house and a cat. And you can live your normal life, even though you have all these things. And I think just showing that maybe could help someone else that may be feeling a little bit down right now.

Scott Benner 1:08:20
I appreciate that. Thank you. I appreciate you being willing to go through this and the joking around and oh, yeah, and all that stuff. Six kids. I didn't even ask you about that. Your parents are just like little bunny rabbits. You don't even let you go.

Hannah 1:08:35
For four of them technically have a different dad, and that me and my brother down closest to have the same Dad. Wait,

Scott Benner 1:08:42
wait. Hold on a second. All right. All right. Hold on. There are six children. Yes. The first four your mom had with a person who's not your dad.

Hannah 1:08:55
Yes. She was married before I say,

Scott Benner 1:08:57
Wait a minute. Hold on. So you're but

Hannah 1:09:01
yes, I understand. There has to be there has to be auto immune. On their dad's side or something? I mean, maybe not necessarily.

Scott Benner 1:09:13
Because your mom's got the arthritis. So we're okay with that. But I'm saying that like your your older brother is with your mother but a different father and he has type one. Yes. Okay. And your mother then has two babies with another person. And you end up with type one. Yeah. Okay. So she's kind of like the she's the linchpin of that. It would seem right and, and the man who stayed up at night is your is your natural father? Yes. Gotcha. And they're still married now. Yes. Got it. And there's auto immune on your dad's side of the family because you mentioned lupus. Yes, but you don't know about your older brother's father. I don't got it. Okay, I just wanted to parse that out to make sure I understood it. Yep. Okay. All right, cool. That's gotta be it. I'm gonna stop on that because my brain hurts. And I've already recorded a pro tip today. That was an hour and a half long earlier today. So I think I'm running out of steam I think. Oh, yeah. Okay, well, let me say thank you then and, and hold on one second for me okay.

A huge thanks to Hannah for coming on the show and sharing her story. She drank out of the Christmas tree. I'm not going to forget that anytime soon. I'm also not going to forget to go to contour next one.com forward slash juice box and learn more about that Contour. Next One blood glucose meter. While I'm on the internet, I'll be looking@dexcom.com forward slash juice box, get yourself the Dexcom G six continuous glucose monitor. And maybe you're eligible for a free 10 day trial, you'll find out at the link. There are links to contour Dexcom and all the sponsors at juicebox podcast.com. are right there in the show notes of the podcast player you're listening in right now. Speaking of that, podcast player, Are you subscribed and following the Juicebox Podcast in your favorite audio app, like Amazon music, Apple, podcasts, Spotify, and on and on? I mean, all of them. And if you follow or subscribe, depending on whatever your app lets you do, they just use different words. That means follow. You know what I mean? If you do that, it really helps the podcast. It helps it almost as much as when you leave a great five star rating and review wherever you're listening, or when you tell another person about the show. Speaking of the show, perhaps you're looking for the diabetes pro tip episodes. Well, they begin in your podcast player at episode 210. They're also available at juicebox podcast.com, and diabetes pro tip.com. It's a lot of series in this podcast. Did you know about it? How about the diabetes? How about the defining diabetes series 47 I think episodes up to now and growing every day. Defining diabetes is also available at juicebox podcast.com. It's available at diabetes pro tip.com. And it goes back so far in the show. I don't even I don't even know like three years ago 2019 It started I think when we defined Bolus, you're not going to want to miss the after dark series covering topics from depression and self harm to trauma and addiction and everything in between adult topics, real things that happened to real people who happen to have type one, there's a complete series about algorithm pumping you can learn about tandems control like you the new arm the pod five or loop. I think we even have one about Yeah, we do. The mini med six seven eg the how eat series talks about how different people eat different listeners Come on, talk about their eating styles, Bernstein FODMAP keto flexitarian intermittent fasting plant based gluten free low carb and on and on. The diabetes variable series talks about those things that impact your blood sugars that you don't think about all the time, like alcohol, menopause, weight, change, temperature, trampolines, go into WalMart, all the stuff that impacts your blood sugar that you never think of. All of this information is at juicebox podcast.com. If you're looking for lists of these episodes, join the private Facebook group at the top, click on Featured and all the lists are in there. They're beautiful made by Isabel, the lovely lovely lady who helps me with the private Facebook group, which by the way, has about 26,000 people in it now and you could be one of them. Just people talking about using insulin, diabetes and helping each other Juicebox Podcast, type one diabetes on Facebook. Before I go let me remind you t one D exchange.org. Forward slash juicebox takes fewer than 10 minutes to take the survey. You'll help people living with type one diabetes, and you'll support the show. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#711 Bold Beginnings: Terminology Part I

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Test your knowledge of episode 711

1. What is the main topic of Episode 711?

2. What does the term "Bolus" refer to?

3. What is "Basal" insulin used for?

4. What does CGM stand for?

5. What is the purpose of a CGM?

6. How often should you check your blood sugar with a CGM?

7. What can a CGM help prevent?

8. What is the defining feature of the Bold Beginnings series?

#710 Joanne Milo Wants Her Data

Instructions:

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#709 Not the Christmas Tree

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