#153 Beyond DKA Awareness
Sarah Lucas from Beyond Type 1 tells us about their expansive DKA (diabetic ketoacidosis) awareness campaign. ....
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Scott Benner 0:05
Today on episode 153 of the Juicebox Podcast, I'm speaking with Sarah Lucas, founder of beyond type one, Sarah's on the show today to tell us all about their DK awareness campaign, you are going to be fascinated by how quickly they are spreading across the country and the world, trying to help doctors and patients understand the signs and symptoms of Type One Diabetes before they've been diagnosed. Awareness like this saves lives actually saves lives. The campaign is spreading quickly, of course, because of beyond type one, but also because of their volunteers and the people on the ground in certain states and areas that are willing to put their time and effort into reaching out to doctors offices, Sarah is going to explain the whole thing. If you just listen to find out more about it cool. And if you think you might want to help, that's even better. Nothing here on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before being bold with insulin. And you know what, no ads for this one, because the second one in a week, you don't deserve to have to sit through ads twice. I got your back. Having said that next comment on the pod, fantastic sponsors of the podcast. There are links in your show notes. If you want to find out more. Here comes Sarah Lucas from beyond type one.org.
Sarah Lucas 1:17
So beyond type one was founded in July of 2015. Because my one of four co founders and we came together because we really wanted to create the an organization for people to help them live well today for you know, we wanted to inspire people, we wanted to provide education, and hope. And obviously the pastor the carer is an important component of that as well. But we really felt like there was an opportunity to create, you know, a movement, unify a community globally, which has been very successful, fortunately, and accomplishing thanks to social media and technology. So we've currently got 1.7 million people around the world that we've gathered together in the beyond type one community. And we are really excited every day to continue to build and grow that.
Scott Benner 2:11
That's an amazing number in such a short amount of time, actually. So your your feeling was that those people were out there. They just weren't, I don't want to say harness but they weren't together is that
Sarah Lucas 2:25
when we think about the type one space, historically, it's it's been fractured. There are a lot of, you know, efforts that are there's a lot of parallel efforts. There's a lot of there's a lot of anger in the community, there's a lot of misinformation. And so we thought, could we come in and be a unifying force, bring people together, and help provide them with both what they need to live well with today? But also what what is the world at large need to know about type one, because people still don't understand this disease. It's been around an incredibly long, you know, time and people still don't understand the disease at its core. And for us, that's why we feel like we aren't further along on the path, you know, to a cure is that people still don't understand the disease, we're still dealing with the jokes, the misinformation, the constant comments about Did you eat too much sugar as a kid, you just take your insulin and you're fine. So we wanted to come in and help really bust some of those myths, and then provide the type one community with just solid information solid community and really then empower them to go out and live beyond their diagnosis to live their best life.
Scott Benner 3:36
So then my question is that once you did that, because that I agree with you and and but I'm wondering once you did that, and then you saw all of the different issues that need addressing did it feel like it was fragmenting again, is it hard to hold it together?
Sarah Lucas 3:54
There's a lot of work to do is what we really see every day. And our goal at the end of the day, we we are a very small team here in Silicon Valley and a borrowed office, we've got a few remote employees around the world and, you know, a leadership council that is also around the world and very global and we work together remotely and we at the end of the day are just trying to make things a little better every day because that's that's all we can do. There are so many issues, Scott just between the the misinformation between you know, the people dying as DK at diagnosis, people not having access to insulin, people not being able to afford their, their insulin or their supplies. You know, there's just a lot to do. And some days if we think about it too much, it's it's pretty debilitating. So our, you know, the way that we operate here is we tackle things one at a time, you know, that we can we try to create scalable solutions and we're trying to have an impact. Little bit every day, we then turn around and look at who are the organizations we can partner with? Who are what are the movements and the issues that we can get behind and put our social media weight behind? And how can we help amplify efforts. So while this type one space is very fragmented, and fractured, still, we do feel like we've been able to make some inroads and coming to, you know, bringing people together, unifying efforts, sort of matchmaking, if you will, between organizations, helping people work together a little more, you know, just making the space a little more cohesive, but there is definitely much much work to do.
Scott Benner 5:38
It's, I know that I'm only trying to accomplish like, sort of this one thing. And, you know, because you're talking a lot about a lot of like, the initial stuff about diabetes, and I had to focus on I felt like I needed to focus on one thing. So I thought, I just want people to understand, basically insulin, like how to use it to make your days better, you know, like to make better outcomes for yourself in the short term and the long term. And even that is, it's not easy, like it just it's a consistent effort, you know, you reach a, you reach a big group of people, and then, you know, three times as many people are diagnosed the next month, and then, you know, how do you reach them? Again, again, social media platforms keep changing, what's popular, how they use it? And you're just like, Well, can everybody stand still for a second? You know, like,
Sarah Lucas 6:28
right? Well, I think, you know, the, the beauty of beyond type one is, is that, you know, we are a small lean team, like we've talked about, but we have really big tools, we have, you know, 12 digital platforms, and we are able to reach people in different ways across all of them. We are also have three of those are for the Spanish speaking community. So we're able to serve that population as well. And we know that we have these tools, and we use them in different ways. And, and, for example, our app, which is, you know, just beyond type one is the app that we felt. And we use that really to get when we want to finger, you know, we want to finger on the pulse. We want to take the temperature of the community, we we pop questions into the app, and we immediately get hundreds and hundreds of responses. And so we're able to, for example, we asked a question last week, were you initially mis diagnosed with Type two, and 23% of the people who responded were initially misdiagnosed with type two. So we were able to get that information really quickly. And then that helps us, you know, inform some of the strategies is that we are listening to the community, across all forms of social we are understanding their needs, their needs, the needs are very different. Whether if you're a patient, a parent, if you're diagnosed as an adult, if you're diagnosed in a country where you have limited resources, and access, you know, these, these are all different problems. And so we're listening to them, we're trying to understand them, and we're really engaging with the community. And that informs almost, you know, 100% of our strategy is comes from listening to the community. So it while it is overwhelming, I think what we are really able to see is the power of social media technology. And so when we have, you know, either a question, or we have an issue we want to get out there in front of people, we're able to do it just in a massive way really, really quickly. And so that that is the part that I find exciting, we're able to, in this new world, we're able to get a message out there within seconds. versus if you think about sort of the more traditional models, you might tell the employees, they might tell your community, they might share that sort of via in person or in a newsletter, I mean, we really have the ability to communicate instantly with the type one community all over the world. And it's, it's pretty exciting. And, you know, this disease is one of the few that you self managed for life. And so to connect to this community, again, it brings such power to them. And the one thing we hear every day all day long is I know, I'm not alone now. So many people were isolated before. And now they actually have community whether it's, you know, virtual or in person. And so that that part is what gives me hope is that we actually see progress on a daily basis. And the problems are big, but the community is big. Yeah,
Scott Benner 9:22
I get that. I get that response a lot too. Like I didn't know anybody who had type one, but now I feel like I'm listening to someone every week that does and huge part of
Unknown Speaker 9:31
action is powerful. Yeah,
Scott Benner 9:32
for sure. So okay, so one of the things that you've identified along the way that needs fixing, is the fact that people go into a doctor's office, sometimes a lot of times kids but I'm assuming adults as well. And they have flu like symptoms, which is really they have type one diabetes, and they get treated for everything but nobody tests them. And that leads to the aka and and how do we stop that like how do you get Doctors to say, I mean, it can't be expensive, right? Like, what's it cost to test somebody in offices here they have type one diabetes?
Sarah Lucas 10:06
Well, I think it's, it doesn't cost a lot. Point, it's, you know, we all know a test strip, you know, everyone says a test strips $1 in the US, or you know, the urine, the urine tests or even, you know, a quarter, whatever they are, if you buy them over the counter, the issue for us is that in the US 40, over 40%, so about 41% of people are actually in DK at diagnosis. And so what that means is, their early symptoms have been missed those early warning signs, we're all very familiar with the frequent urination, the headaches, the blurry vision, the the, you know, in some cases, that heavy diaper for babies, those those early symptoms, the weight loss, they have been missed entirely, or excused away. And we this is very common. And so what happens is, as your you progress towards, you know, your beta cells really shutting down and the lack of insulin, you know, you build up the ketones in your system. And so this does result, as you're saying it's very flu like symptoms, nausea, vomiting, loss of consciousness. So we look at this problem, we say, how is it that 41% of people are in this state when they are diagnosed. And we know that in other countries in the Nordic countries, that number is very low, it's under 10%. We also know in some of the developing countries, it's in the 8080, to 90%. So we have beyond type one, look at this, and we say this is this is a marketing problem, this is a straight up PR, you know, we could solve this with a with a really solid and thoughtful PR campaign. And we can raise awareness, and just get those symptoms tucked away into the minds of parents and school nurses and physicians and their staff. And so when people are coming in, as you say, with flu, like symptoms, especially this season has been horrific with the flu, that they are at least ruling type one out, you very well may have the flu, but you might have something as we say that could kill you. And we know that decay can be fatal. And we know that it also costs millions and millions of dollars to treat people who are in decay, you know, and that there is a potential for brain and organ failure, brain damage, organ failure and loss of life. And so that to us is, it's kind of insane, we should be able to solve this problem. It's a straight up awareness problem. And so that was the idea. This was very much inspired by Casey's death, you know, in Utah, and I came into the office one day and I there's been this image of her brother's carrying her little casket and and that was on the front page of the paper in Utah. And I came into the office and said, this is, this is crazy what this family has been through, she was sent home from the doctor three times. And so we look at that was sort of the initial inspiration. And so we thought, what is the mechanism for a really widespread campaign? How can we what how can we deliver this campaign to people all over the country and all over the world. And so in the US, the the way that we've chosen to get started, is the partnership with the American Academy of Pediatrics. And so that was that was we designed a campaign and then we were lucky enough to be introduced to the executive director in Pennsylvania at the American Academy of Pediatrics through to really wonderful parent advocates, Michelle Berman, and Debbie Healy. And we essentially walked in and with this well designed campaign and said, Let's work together on this, if you will endorse it, and provide the information for your, you know, the members of your Academy, all of the pediatricians in Pennsylvania, will pay for the campaign. And so we worked with them for a few months to sort of refine it to something that everyone felt great about. And then in the state of Pennsylvania, that rolled out in October of 2016. And it's a print and a digital campaign. So the doctor's offices receive a physical, they receive a notification from the American Academy of Pediatrics via their newsletter that this campaign is coming. We then provide a print campaign that is sent to them. And it's, you know, like all things beyond type one, it looks great, and it's really well designed by Sir Johnson, our creative director, and it is co branded with the American Academy of Pediatrics in that state. And then they receive a print campaign and then we follow that up with a custom portal that we built for them on our website that includes additional print materials they can download in 18 languages. Victor Garber from our leadership council, who you know, well Scott created video and audio psats for the office. To use, and then they have permanent access to that campaign. And so that was how it started. In
Unknown Speaker 15:07
this cold and flu season, just an extra reminder, type one diabetes can be like a wolf in sheep's clothing, it can hide behind symptoms that mimic the stomach flu or virus is left untreated, type one diabetes can lead to significant complications, including death. Ask your doctor about the warning signs, and how to screen for type one diabetes.
Scott Benner 15:38
having that connection to the to the pediatric society that that just makes them take it seriously when it's coming through the door. If you just show up, and you're sending emails and calling and saying, Hey, we have this thing, you're never really gonna get that kind of traction. But how what was the initial like it? Because you basically you spirit, you started it out in Pennsylvania? Would you have called a success in Pennsylvania? Did you see people really the doctors offices paying attention using the materials hitting your portal? That kind of stuff?
Sarah Lucas 16:07
Absolutely. I mean, we do have survey data that shows the, the teams that the pediatricians offices are asked to provide, you know, to answer a survey and provide us back the data so that we understand how this campaign has impacted their office both in terms of informing the staff and making them more aware of type one. And then also in terms of informing their patience. And across the board, we see an increase in awareness and in the level of understanding of type one diabetes, you know, when we receive this data back, and so it's in varying degrees, obviously, that there's a really large increase in the awareness among patients that's being self reported by the the physician's offices. And so we know that this campaign is impactful. There have been other campaigns and other countries Italy has a study that that does show that this awareness campaigns do impact this moment of diagnosis. And so our thought is, can we catch people early enough? Can we get them started, you know, on insulin and sort of on their new life with type one, as opposed to them starting off in DK a most likely being urbact in the ICU? And so can we start? Can we just sort of take this process back to we can't keep people from being diagnosed with type one, but can we keep them from dying? Absolutely. We know that we can. And so we see it every day, the the results that we see from both patients and from the physicians is very, very positive. So you're right, having the American Academy of Pediatrics endorsed this campaign was really part of that secret sauce, because it does people up on the envelope, right when they see it, it's got a very clever, you know, endorsement right on the front of the envelope. It's beautifully branded. And so it's an interesting phenomena that people want to open. And then we've got all the materials available for them. And then in every state that we have rolled out this campaign, we have actually, we have stories from the families in that state. We have, you know, the letter is signed in every state by the leading endocrinologist, and the leading thought leaders in in sort of the diabetes space in every state. So it's really a very localized campaign that has been rolled out so far in 18 states in the US, it's reached about 22,000 pediatrician offices. They see about 90 million patients a year, those those 22,000 offices. And we're continuing to roll it out. But it but it is that there's a process, and it's a state by state. And so the end of Pennsylvania speaks to the end, you know, in the next state over and suddenly we've got, you know, an introduction there. And so it's really been this wonderful campaign that that has taken, you know, it's a we're about 15 months in, but it's definitely rolling at a pretty terrific pace. And that's because we're able to utilize volunteers on the ground, who are actually helping to see this through their their local, their state chapter. And so, you know, we pay for the campaign, they're working on the access piece of it. And this is just sort of phase one for us. The pediatricians were a natural place to start.
Scott Benner 19:25
Yeah, it's interesting. Well, two things. First of all, I think of diagnosis already such a trauma to begin with, to add the extra trauma of the DK on top of it, it really could if you think about it, it really could color your first month's with diabetes. You know, like there's a difference between rolling into the office, hearing something horrible, like you have type one but then going home, and being able to process it as a clear headed person who's not in the ER as a parent who's not thinking oh my gosh, what do I do? How do I ignore this, all that stuff that comes with it, all that guilt and that pressure. So just alleviated? That for anybody is fantastic. You know what I mean? But But the second thing you said that really sticks with me is, is that idea of just, you know, having people helping is how it spreads. Because like I said to you, before we started recording, somebody who had been on this podcast before, reached out to me and said, Hey, you should really talk about this, this campaign that beyond type one's doing. And then as you're talking, I realized, I get notes all the time, from doctors offices, that listen to the podcast. And so it's not out of the, it's not out of the realm of possibility, it's someone in an endo office, or in a in a pediatrician office who has a connection in the state, you're not already in, like it couldn't start a fire there. And I guess that really just is how it has to happen.
Sarah Lucas 20:44
It's, you know, for us, it's been actually a really wonderful progression, it's been a way for us to roll out this campaign that it looks the same in every state, except on the very bottom is where we do the cobranding. So that this asset is the same, it's all the warning signs of type one, it's, it's, you know, ask your physician, if this could be type one, but it's, it is the same asset across every state. And that's, that's by design. We want people to recognize the signs and symptoms much in the way that you see that poster at every swimming pool in the United States that shows you how to, you know, give CPR, and so we all can picture that in our head, because it's the same consistent asset. And so that was one of the real requirements for us is, is, you know, we had to, we had to be really strict about that and say, Look, we were not going to change this other than this little logo at the bottom. This is the asset we are providing we are paying for it, we are going to roll it out there with your life, we're going to make it very seamless for the APS. And so that's been a wonderful partnership. And so they that this agreement has been, you know, held across 18 states, we've also rolled the campaign out in across New Zealand, that was rolled out to general physicians there. But in the US, we've this mechanism of the AAP is how we've, we've had to stay focused on it, Scott, because in every state we're in, we get a response back saying, gosh, could you do this with the EMTs? Could we go to the GPS with us? Could we talk to the nurse practitioners? And so for us from a from a funding perspective, frankly, I mean, we've got it down to about $2 and 91 cents in office. Wow. It's a very slick campaign. And we're really proud of that. But you know, we could be going in 100 directions. So we have committed to all of the AAP chapters in the US. And then we're going to circle back with what's the next step is that the school nurses is at the college campuses. And so we're testing very small pilots in a couple different states to see what is the next mechanism, where we actually can have this same wide sweeping effect. Because we have a lot of wonderful people who are willing to go hang up a poster in their school or their office, you know, or somewhere in their community. But really, for us, it's how do we get this campaign everywhere, so that there can be no excuses for people not at least taking that fingerstick dipping, you know, doing a urine urine stick depth, and just double checking, that's really our goal here is to say, Can we just rule out type one, when people are coming into the office, and they're, they're under the weather. And so think of that, you know, the number of lives we can save, we know is tremendous. We know that to your point, it's very, very traumatic to be diagnosed in in decay, not to mention expensive, you know, millions and millions of dollars are spent on this, you know, every year and that that can all be avoided. There's loss of productivity with parents, you know, the average hospital stay is increased substantially. So it's not just the trauma, it's, it's all of that combined. It's really just unnecessary, because this is a lack of awareness among, you know, both both parents, and you know, you think about the school nurse sending kids home with the flu. And so how easy would it be to just email those parents and say, you know, just just have the physician double check that it is the flu. So for us, you know, the stories of heartbreak are just too too many. And and this season, we've seen quite a few, quite a few deaths due to missed diagnosis and that upon reflection, people are able to certainly spot those early warning signs and it was just 100% of lack of awareness.
Scott Benner 24:31
Well, how about other countries would you be open to hearing from people I just as you were talking, I pulled up a the chart that I have that shows me where people listen to the podcast that and sometimes it's even staggering to me and you know, the thousands of people in the UK, Australia, Sweden, Japan, France, Germany, Netherlands, Slovakia, I can't believe this and now that I'm looking at it, would you like people to call you from Mexico, Spain, China, and wow, how are you people listening in China. I don't speak Chinese. But but but I mean, would you want power
Unknown Speaker 25:02
social media?
Scott Benner 25:05
Do you would you really want to hear from like, could you see yourself expanding outside of the US? Or do you want to cover the US? More blanketed? First?
Sarah Lucas 25:14
It's a great question. We actually have multiple efforts happening, you know, in other countries as well. So, next month, this, the decay awareness campaign is rolling out in partnership with the Mexican diabetes Federation. And so that that's rolling out to about 1500 practitioners. In Mexico, we, as I mentioned, we rolled out in New Zealand in October of last year. And so that was a really tremendous partnership with diabetes, New Zealand, we also happen to have a leadership council member on the ground there in New Zealand, who was able to really help facilitate that. So the amazing part about this campaign is we've had to, we've had to fly one employee to one meeting. And other than that, this has been 100%, coordinated by Michelle Berman, our leadership council member who is the National parent lead for this campaign, and then all the volunteers, both in the States and in other countries. We're working on a project in India with one of our global Ambassador members, the poorva, we've got, you know, we do have some smaller efforts happening in Wales and in the UK right now. But But to your point, Scott, like, yes, we anticipate this being a global campaign, to be honest, it's 100%, fueled by funding, so we've got the campaign, we know how to roll it out. It's in 18 languages already. It's just as we sort of continue to look at other opportunities, we'll we'll want to be able to, you know, to have the budget to make it happen. But absolutely, this is this is intended to be a global campaign, and it's already well on its way. So I,
Scott Benner 26:51
in my mind, I was gonna start thanking you for this and saying, This is great. Thanks so much, what can people do? But I have another question first? Yeah, I'm not, I'm not kissing your butt. I'm really serious. you're accomplishing this with eight people. Right? Have you ever wondered what you could do with 16 people or 108 people every day.
Sarah Lucas 27:12
I mean, I tell you, we have a wish list in here a mile long. And it's, it's really hard, we have an incredible, incredible team. And they are so hard working, many of them do not have a connection to type one. I you know, two people on our staff have type one, but the rest are people who really came into the space with incredible skills, and have have come to be really truly passionate about the space and what we can do in it. So it's been really interesting to, I guess, see, type one through their eyes, in particular, and understand how people view this disease, the work that we need to do every day, we wonder what we could do with you know, one more person to more people at 10 more. And so I think for us, it's it's you are seeing a very constrained type beyond type one right now, like we know what we want to do, we we have an incredible list of, of ideas that we would love to build out, and, and projects. And I think that for us, we are only constrained by our finances, and by the ability of this team. And so you've got eight people who work, you know, somewhere between 80 and 90 hours a week, they work incredibly hard. We are run like a tech startup. You know, here in Silicon Valley, we we sort of, we say often like we're we look like a lifestyle brand. We're running like a tech company, we happen to be a 501 c three. So at the end of the day, it is all about finances. And we are we are limited in that regard. But certainly we are not limited by our creativity or imagination, or our desire to change the world.
Scott Benner 28:51
I have never had this thought before. But while you were speaking earlier, I was like, maybe they'll just like absorb my podcast for me. Because I just because the one effort is not that I'm asking to do that. But it's just it's that feeling of we've talked about it before I have the same thoughts. People have heard me say it before. I know how many people the podcast reaches, I'm coming up on a half a million downloads. But as I look at it, and I look at the responses, I get back from the listeners, you do feel bad that it's not 10 times that amount, like you know, and not for any other reason. It's not like anything would really change for me. It's just that when you see somebody say something like, Hey, I listened to the podcast and my agency went from eight and a half till six you think why couldn't have reached more people with this? Right? You know, and it's it's, it's heartbreaking. I now feeling like I'm gonna fly out to Silicon Valley crash your office and make people give me pointers about my podcast for today.
Sarah Lucas 29:41
Well, first of all, you you are just doing such a tremendous service and and i think that the tricky part for people is you you can't you know, you can't get caught up in how many more I could be reaching. You just have to keep at it every day and it grows right. It does continue to grow and and we feel the same way. I think that's the part where we think About what we could be doing. But instead we try to focus on what actually are we doing. But I will tell you, Scott, we've had some really exciting things happen. I mean, last year in June, we actually acquired to diabetes in a studio of essays at town foundation. And it really allowed us to start serving the Hispanic community, which was a huge gap for us. And then we launched beyond type one, and espanol in August. And that was, you know, really an important moment to us, because we knew we weren't touching this, this population, we knew that they had tremendous need. In January, we actually acquired type one run. And so we now have running groups, 61 of them as of this morning, all over the world that are just popping up running groups for people to meet up and just go for a run together and really start to foster that community on the ground in places. So I think we're seeing like, as beyond type one, we want to be additive and help amplify people's efforts. And, and sort of work together where we can and and really help sort of supercharged people's efforts, like, you know, the work that you're doing is so important. But you're right, like, let's, how can more people hear it? How can more people hear these, these podcasts. And so I think that, that that's where the type one community does need to come together more, we need to see more collaboration, we need to see more people willing to work together. And I we say this all the time is beyond type one we we love working with with people who are passionate about type one, but we're not going to go sit in a focus group for a focus group. That's the other thing about us we are we are fast, I'm sort of you know, I've been at this 19 years, and as a parent of a type one, and I'm sort of done, I'm like, let's just start making stuff happen and make, we need to be making more noise. And we're only going to do that if we can come together and sort of have everyone in the type one space get on the same page. And that's what's been brilliant about the DK campaign is you've really seen the power of people, when they are passionate about about just something as simple as, let's get this poster in the hands of every pediatrician, let's get this, let's get this campaign in front of parents so that they know what at least to look out for, as they're raising their children. And then also, in the minds of adults who are impacted as well, they are they're in decay many times at diagnosis, you know, just as as children are and so we have to sort of tuck these symptoms away for people so that they are really they can they can recognize someone they see them. Because these are these are some of the problems we can solve. But I've really been impressed with people coming together and working to make this happen on the ground and they're in their state. And it's been really exciting to see.
Scott Benner 32:39
Okay, so if people want to help you in a different state, how do they get in touch with you? If somebody hears us and they're from a pediatricians office? Like what's the what's the pathway back to you.
Sarah Lucas 32:49
So beyond type one.org, that one is new miracle. So beyond type one.org if you look under programs that I all about, you know, our DK campaign is there and it gives you ways to reach out to us you can see if your state is either in progress, or has been completed. And again, this is really this concept of going through with the pediatricians is just the beginning we really want to think about what are those other touch points so that we can really make sure that we are catching people at all stages so that we can recognize you know, that the people can recognize the symptoms and we can stop deaths from you know, Miss, diagnose type one, it's just not necessary. It's tragic. And it's a problem we
Scott Benner 33:30
can solve. I can't believe you even have that beautiful website up but just a people to be perfectly honest. So
Sarah Lucas 33:37
well, we got a lot of magic makers over here a lot of creative people with a lot of a lot of talent, a lot of heart and a lot of skills. So I'm really Uber proud of our team and and you know and then our leadership council and the council said that work with us, you know, the incredible volunteers from around the world that we work with so I'm really you know, and then people like you that helped us amplify our efforts Scott and just really get the word out about what we're doing we're so appreciative and you know, you are reaching an incredible audience and serving an important purpose and we're always here to help with that as well
Scott Benner 34:12
you're very nice it's a no brainer to be involved with what you guys are doing so but but thank you very much I will put links in the show notes so people can click through and not have to remember what you said but I really appreciate you coming on and doing this
Sarah Lucas 34:23
half deck and you'll see your video of your friend Victor Garber there
Unknown Speaker 34:26
yes about it
Sarah Lucas 34:27
might be the flu or might be something else
Scott Benner 34:30
people if you have not heard the episode with Victor Robert to date, one of the nicest human beings I've ever spoken to. And so it really just it I was just overwhelmed with how at his core kind he was it just he wasn't pretending I could tell in two seconds is really sad.
Sarah Lucas 34:50
Now Victor Garber is an extraordinary human and as busy as he is, he's back on Broadway right now and he's just incredibly busy, but he is always willing to especially On these campaigns where we know we can save lives to sit down and you know, craft a quick video with us, whatever we need, he is really, you know, he's lived with type one over 50 years. He's extraordinary. And, you know, he's really an important part of this campaign for us as well. So we're really grateful for everyone who has had a hand in it, and to everybody who's hearing about it. Help us help us bring it you know, because we can, we can take this as a problem we can solve.
Unknown Speaker 35:25
This is Victor Garber. This cold and flu season, just an extra reminder. Type One Diabetes can be like a wolf in sheep's clothing. It can hide behind symptoms that mimic the stomach flu or virus. If left untreated, type one diabetes can lead to significant complications, including death. Ask your doctor about the warning signs and how to screen for type one diabetes.
Scott Benner 36:04
If you'd like to learn more or even get involved, go to beyond type one.org. There are also links in your show notes
The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!
#152 We've Got Ourselves a Conroy
Kevin is the father of a child with type 1 diabetes who uses the Dexcom CGM with multiple daily injections....
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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
Just a quick announcement on Saturday, March 3 2018. That is this Saturday, I will be speaking at the type one nation summit for the New Jersey Metro Rockland County jdrf chapter, going to be given a presentation called bold with insulin but you know, presentation. I'm going to bring a couple of slides that I'm going to talk about like I do on the podcast. Come on out. There's a link in your show notes where you can get your free ticket. It looks like it's going to be at the DoubleTree by Hilton in Somerset. The event goes from 830 till 2pm. Again, that's this Saturday, March 3, I will be there all day, though. I don't think I speak until after lunch. I think around one o'clock. I don't want to say they're saving the best for last, but that's probably what's happening. So come on out. It's gonna be like watching the podcast live. I'll be there all day. I think I have a table somewhere in the morning or you can come say hi, and I can answer questions or we can just you know, shake hands and talk about the Black Panther movie or whatever. And then you can hang out after lunch and hear my my chit chat. I hope to see you again link in the show notes. It is completely free. Alright, let's talk about the podcast now. Welcome to Episode 152 of the Juicebox Podcast. Today's episode is sponsored by Dexcom. And the pod Omnipod. Of course, a tubeless insulin pump, the one that I've chosen for my daughter, and Dexcom, makers of the G five continuous glucose monitor. You can find out more@dexcom.com Ford slash juicebox. Or Miami pod.com. forward slash juice box. And they'll be some ads in the middle. Don't skip them. I work hard at this things. Today's episode, Kevin Conroy, Kevin is the father of a child with Type One Diabetes. He's another person who answered the call when I said I want to talk to people who use multiple daily injections and are having success. Kevin Absolutely. As he was fantastic on the podcast. He's got a lovely voice much nicer than mine. And he's thoughtful and smart. So you know, bonus 150,000% absolutely nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise Always consult a physician before becoming bold with insulin. I feel like I've said that one too many times.
Unknown Speaker 2:16
Okay,
Scott Benner 2:17
I'm still getting over my head cold. I'm a little loopy, I think you can tell. Again, I was not loopy or sick when I recorded the episode, so don't worry about that.
Kevin Conroy 2:37
My name is Kevin Conroy. I'm the parent of Tyler. He's a type one diabetic. Six and a half years old. Now. I was diagnosed when he was two and a half. So we've been living with it for about four years. Have some history of of my family. My brother was diagnosed when he was 19 or 20. I forget when exactly but about 10 years ago now. And so we have seen it firsthand, both on the older side as well as definitely the younger side.
Scott Benner 3:07
How old were you when your brother was diagnosed?
Unknown Speaker 3:11
Gosh, I would have been like 2324 Okay,
Scott Benner 3:13
so you were a little rough? Yeah. Interesting. Is there any other? Now besides your your child? Is there any other instance of type one through your family line?
Kevin Conroy 3:24
My cousin on my dad's side has it as well. Okay,
Scott Benner 3:27
so you guys are you're steeped in it, then pretty much?
Kevin Conroy 3:31
Well, you know, yes or no, because when my brother was diagnosed, I mean, everybody, you know, came to the hospital, and then they you know, my mom's like, Oh, this is really serious. This is really serious. But I think none of us really internalized just how serious it was, except for my brother. Because, you know, him being, you know, like 20 years old. And in college at the time, his sophomore, I think, you know, he was really the one responsible for his care. And so none of us really thought it was as big of a deal as I know it is now because he he really took on all of the management of it. And so none of us saw the, you know, went through that same learning curve of counting carbs and dosing, insulin and everything like that, because, you know, after he was released from the hospital, he was he was right back at college. And so it was, yeah, you know, it occurs. I don't want to say out of sight out of mind, but
Scott Benner 4:28
it is a little bit you know, if you're with a group of friends walking down the street and one of your finds $100 bill on the ground, the excitement of that is for everybody. And then he leaves and takes the hundred with him and you don't you don't think about it again. You don't you know, don't get to spend it in an odd way. Your brothers given this, this disease and everybody's there going, Oh my gosh, that's incredible. Sorry, this sounds sad and blah, blah. And then he goes back to school. And you know, and it's not like you sat I'm assuming you didn't spend every day just thinking about him and his diabetes. He was going Because it probably when you saw him he was okay. You know when you when you converse with a moose, okay, you don't think about all the details on it and and now you have a child that has type one and now the details are with you all the time. So Oh yeah,
Kevin Conroy 5:11
yeah, every three minutes or so like background process in my head kicks off. What's his number? How's he doing what's on board? What do I need to do I need to do anything? No. Okay, great. Let's go on to the next three minutes.
Scott Benner 5:22
I used to joke that when my daughter was doing shots that I could, if you asked me, please tell me an hour from now? Yeah, I would get it within a couple of seconds. I just, I could I felt like I could reset this clock in my head over and over again. Like we should have, you know, that sort of thing. So what kind of um, so you're doing, you're doing MDI, is that right?
Kevin Conroy 5:45
Yeah, multiple daily injection, which I spell out just in case, any of the listeners haven't heard what that acronym stands for. It took me a while to figure it out initially. Yeah, so we're doing we're doing MDI, with my son been doing it for past four years now, are almost coming up on four years, I should say his diversity is in September. And you know, as a longtime listener of this podcast, I think a lot of the advice that you've given in terms of, you know, being aggressive with diabetes, not being afraid of diabetes is having a healthy respect, of course, for it, right, but, but being aggressive in terms of how you're handling highs, and not being as afraid of lows, but respecting lows, has really helped us get better control in the last year. So and I, you know, you've had so many great guests on the program, that are all focused on the pump, and I've got nothing against the pump. But for us right now, for our family, MDI has been the right choice. And I'm hoping at some point, my son will transition to a pump, but you know, for anybody else out there who's doing MDI or is only able to do MDI, because, you know, insurance is such a real and present concern with this disease on top of everything else, you know, maybe all you can afford, or all the all the equipment you have access to for whatever reason, sure. And I think that there's a lot that you can do with MDI, to still get great results, maybe not quite as good as you could get with a pump just because of the dynamics of insulin. And, you know, having, you know, just getting it in a shot, even if you've got even if you do 10 shots a day, it's not the same as the constant drip as a pump, but I think you can still get really great results with MDI. And I, I felt it was important to, you know, just make sure that's a part of the conversation, too. Because I think you've had you had so many rich conversations on the program. And I think it's, it's so great to that you are taking such efforts to paint such a rich picture of the full type on spectrum. Well, I
Scott Benner 7:42
appreciate that. But and I like I told you before I I'm trying so hard to add something in this space, but it's not where my you know, if you listen to me tell my story when we were empty, I wasn't doing very well. And so I have no genuine expertise whatsoever. But I do think that our conversation, you know, and I've reached out to other people before, I think you might be the third person one of them has. One of them hasn't aired yet. But you know, it's like, Hey, I'll come in and talk about MDN. I'm like, great, like, how are you doing with it? Like, we're not so good. I was like, well, that's not good. But I'm like, okay, that'll still be a good conversation. It just won't get to the right thing up here comes in with our lunch. Excuse
Unknown Speaker 8:17
me. No worries take time.
Scott Benner 8:20
This is a tough day because she was at she was a gym. And so I can only see her CGM from about 25 minutes ago. And so I don't know 100% know where she's at right now. I'm going to ask her if she can see the number or if she's been far away from it enough that she doesn't have it yet. It might pop up while we're talking. But no matter what she's gonna say, Dad, I feel fine. What's Bolus? I guarantee you that's what the see this is the tax it's about to come back to me.
Kevin Conroy 8:50
I'm in a blind spot to right now the CGM because he's out himself on range right now. So
Scott Benner 8:54
and how long have you been with the because even though the shots the whole time, but how long did this end? Yes, it is x camera. Which one are you using?
Kevin Conroy 9:01
Yeah, it's the Dexcom. We're in the g4 have been doing that too. Last year.
Scott Benner 9:04
Okay. No, I feel fine, though. So I'm just gonna give her the bullets i think is right.
So what I have here is, last time I saw her blood sugar, which I say is about 20 minutes ago. I think she's about 90. And she's going to eat in about 15 not 10 minutes at this point now. So I gave her an extended bolus, but I didn't give her any of it now. So it's an it's an eight unit bolus. It's all just going to start going in now. So she'll have probably four units of it by the time she starts eating. And, you know, by the time she really digs in, it needs the rest of it should be going like that. Hopefully that'll work out okay. Her school has been a cell phone Bermuda Triangle the last week or so. So okay. Make sure that she had it. She does. Okay, so you're using Dexcom. And you're using MDI, you're hoping Isn't it funny, like, you're hoping for a pump, but at the same time, you're very happy with MDI. So, yeah, I really do want to if you don't mind having a more nuts and bolts conversation, yeah, love your episode. Let's sort of like, let me ask you a couple of questions, answer whatever you're comfortable with. And then I'm gonna try to walk you through a day. So, okay, are you comfortable telling me like, what you're kind of average a one c? Is it? Is it stable? Or does it bounce around a lot? Or what do you see usually?
Kevin Conroy 10:38
Yeah, so the last year for the last year, since we've been on Dexcom, his agencies have been 6.9 6.4 6.8. And based on all the Dexcom data, projecting a 6.7 6.8. Coming up for our next endo appointment, which is Wednesday.
Scott Benner 10:54
So you do have a ton of stability that that's Yeah, because that's almost a full year of staying right in the same space before the deck sounds. Do you have any idea what you were doing?
Kevin Conroy 11:02
Yeah, I'd plot it all out. Thinking you'd probably ask when he was diagnosed four years ago, he had an A 9.4? And, you know, so he asked at the time, they said, Okay, well, you know, they taught us the rule of 15. Right, you know, so 15 carbs, and, you know, give them a unit basically. And because he's a real little guy, so he didn't need much insulin and still doesn't need a lot, you know, compared an eight unit dose is like a huge meal for us, not a lunch. You know, and he jumped up to 11.3. At the for his first check in after diagnosis, because we, you know, foolishly or naively, I should say, not foolishly naively went to the store like Great, well, let's just buy all these snack packs, let's say 15 grams of carbs on them. So we loaded up on cold fish, and raisins, and grapes, and all these other things that now we realize, oh, gosh, why are we giving him all the things that are going to spike his blood sugar, we didn't know, we didn't know, we were brand new, you know, and we didn't understand the effects that fast acting carbs have on blood sugar. And so you know, we ended up getting all of these blood sugars in the three and four hundreds constantly, right after diagnosis. And his endo at the time, who we switched pretty quickly away from just kept saying, I would just, you know, just wait six months, just wait six months, we'll get them on the pump. And we thought of this pump is this magical device that we just needed to get to and we didn't really, you know, she was like, Oh, don't worry about MDI, you know, you don't really need to understand it, we're just gonna get you on the pump. And, and it didn't really make sense to us, because we were really not happy with him being in the four hundreds as much as he was. And so we did a lot of reading. And unfortunately, the hospital and the doctor that we got right at diagnosis didn't really give us very good diabetes education. Or maybe they did on that first day, I don't know, like many parents are sitting in the room, and a diabetes educator comes in and just like, turns on a firehose of information for 45 minutes, while you're like still catching your breath from your child, nearly going DK, you know, it's hard to process and remember it all. So it took us some time, but we ended up switching to a fabulous and children's hospital here in DC. And she, you know, took a look at our numbers and was like, Okay, well, we need to, we need to switch everything around here. And you need to get MTI under control before we put you on a pump. Because, you know, you need to understand the dynamics of manmade insulin, and how carbohydrates are working, and how to, you know, all those complex interactions that happen, because once you have the pump, it's just a tool, right, you still have to operate it, you need to understand all of the variables that you're manipulating. And if you're doing that with MDI first, and you get a good handle on that is her theory that, you know, that you'll be better suited to, you know, be able to handle the pump and make sure that if something goes wrong with the pump, you know, if you've got a bad injection site or a bent tube, if you have one that has a tube, then you know, you need to know how to handle that. And of course, I'll just say I'll say anything that I say should not be used as advice, medical or otherwise.
You know, and so her medical advice for me and my family alone was that we should you know, look at MDI first and then really get that under control and so we got some nutrition counseling and really started to really understand about glycemic index and everything and so from that we got his agency down from 11 to nine and and then down to a heights and so that was that was you know, pretty good. But the more that I read about things and then eventually found your podcast that Oh gosh, like there's there's still so much room for improvement here. And I think the the decks calm was really the The game changer for us. And so I think, you know, you know, one of the issues with MDI, right is that you've got so little control over, providing kind of continuous insulin. And that if you're just giving, you know, five shots a day, let's say, of insulin, you need to figure out your timing really carefully, and not having the, without the insight that adex comm provides. It's really, really hard to make MDI work as well as it can work on its own.
Scott Benner 15:34
Yeah, then you you're, sometimes I think they give you those those intervals, like test again in three hours, because that's your best chance to be back towards where you want to be. And it's funny, they don't sometimes they don't even want you to, to see what's happening in between, because I guess you don't have the tools to do anything about it. And so it's almost sometimes I think it's more of a psychological. I don't want to, I don't mean crutch, but I think they're trying to throw you a life preserver a little bit like, Hey, don't look then, you know, like, like, don't wait an hour and a half after they've eaten you. You don't need that stress. But yeah, but it is. It really is. And I know I've oversimplified it when I talk about it. It's like, it's like, it's advice that won't kill you. But yeah, it's not advice that's going to let you live like a really healthy life. And the real problem is, is when your blood sugar's high, or, you know, too high, you know, these these issues that it's going to cause health wise or down the road health issues. So once your body adjusts your blood sugar being high, you really don't feel like there's anything wrong. And and you know, then it's just that it's just a waiting game until it becomes a real problem. That's not it, then you probably not reversible by that point. So I like knowing I think, I think it's just better to know up front what you're really doing and what you're dealing with. So prior I hear what you're saying prior to Dexcom and everything you're you were slowly coming down with with injections, but you're able to see was still sitting in the eights which you weren't happy about once you realize you shouldn't have been happy about it. And then and then you get to Dexcom. What is the first thing that the being able to see the continuous glucose is like, what is it? What's the first thing that made you feel? I'm assuming it made you feel horribly inept at first, but then once you got past that, how did you feel? Oh, well, I
Kevin Conroy 17:21
did. So not so much enough, but more just what eyes wide open, like, Oh, my gosh, I had no idea his sugar was spiking so high after a meal, and then coming right back down. Because if you're only taking, you know, right before the meal time, and then three or four hours after meal time, you're getting two very small points in time, right, and you're missing the potential, you don't know if in between those two points, you have skyrocketed up to 400 and then come crashing down. You don't know, if you've been level, you don't know, if you've dropped and then you know, is back, you know, his body was just like, ah, we need to, you know, release some glucagon and, you know, let him rise up and our glucose rather and rise up. And, and I think, for us, it was, you know, you don't drive a car with your eyes closed. Right? You are constantly making adjustments and making sure you're staying in your lane. And I think you know, for anybody who's who's got a CGM, if you're viewing that as trying to stay within your lane and stay between the lines, you know, having, knowing when you're veering off course, is really, really important. And having that data then lets you make better decisions. And so yeah, I mean, sure, even, you know, we have plenty of days where he he'll end up, you know, in the, in the three hundreds. And every once in a while 400 although it's been it's very rare now, thankfully. But it lets us you know, see what's happening and then adjust course. So, you know, one of the things that we did right away was get a Pebble watch, and get one of the nightscout watch faces for it so that I'm able to watch his numbers remotely. And for me, I think that is almost as important as the Dexcom itself. Because him being you know, I was five at the time, five year old boy, you know, very active wanting to run around, he doesn't want diabetes to get in his way. And so me being able to just glance at my wrist to know what his number is, and is a game changer
Scott Benner 19:26
for him. Because I don't want to stop you just for a second make sure people understand. So you don't have the G five so you don't have the share feature that's built in. So you have the G you have the G four so you using nightscout to,
Kevin Conroy 19:39
to so you can see things remotely. Alright. So we have we have the G for platinum. So it's got the share feature. So it's got the, you know, we use the Dexcom app, he's got an old iPhone that stays with him that it's just an uploader phone basically it just has the Dexcom app on it. And so it will you know upload everything to the the Dexcom website and then when We have a Pebble watch that will basically Connect straight to the Dexcom servers and download that data. So I can see his curves and his current number and his trendline, and all that other stuff. And so, and it was, as a john kostik built the initial watch face for it, and then I've made some updates and modifications to it, too, to work, uh, you know, more in line with what I'm, I'm trying to aim for. And so that has allowed me to basically, you know, he, as long as he's got his, his Dexcom on him, you know, in a little spy belt fanny pack. And his phone is within Bluetooth range of him, you know, I can manage his diabetes effectively, and he can just be a regular kid, which I think is every parent's goal, right to not let the diabetes get in the way of childhood. And that's exactly. And so, you know, one of the things that we do is, you know, there's really, I say, there's only like three things, as a parent of a young type one, you can really manage, you can control the carbs, you can control the insulin, and you can control your attitude. Yeah, right. And, and to some degree, you can control their activity. But anyone who's who's had a, you know, a three or four or five year old boy, like you really can't control. You can maybe control activity for 15 minutes. But otherwise, they're going to be up and running. And, you know, and so you have to be able to take the tools that you're given, and the attitude, you know, that you want to bring to the bring to the process, to manage it as best you can. And for us, that has been, you know, by having the decks calm, and the Pebble watch face that lets us see his blood sugar has really let us do sugar surfing, with MDI. And I think typically, you know, when sugar Surfing is a book that you can read is written by Dr. Ponder, I want to say his name is
Scott Benner 21:58
Yeah, I've interviewed Dr. ponder on the on the show. Fabulous. Bunch of a while ago, but but, but yeah, he wrote this book that just talks about, I have to kind of say, I feel like I have to say it every time. But I got him on the program, because people asked for him to be on but I didn't know who he was. And then he started talking about what he did. And I started talking about what I did, I was like, wow, we're doing the same thing. You call it something different. And but but that idea of even you, you spoke about it in a different way to about staying in your lane. And yeah, it's funny when you said that it made me think about I just taught my son how to drive last year. And that was one of those ideas that, you know, when I told him initially, I'm like, Look, when you know, you're trying to stay in the lane straight, it's not really this giant correction on the wheel. it's it's a it's just a very tiniest bump. And he's still in, you know, the first couple times, kind of, over, over exaggerated way supposed to do. And as I watched, I never really thought about, but he was only turning the wheel of, you know, a quarter of an inch and still having this giant overcorrection. And I said no last and he's like, how much less? Can I turn it? And it's like, well, you can feel it if you really pay attention in your hands. You know, and I think that has so much to do with bumping a blood sugar around, you know, just, it's, sometimes it's less than a little bit. And you know, and how much less? I don't know, you got to feel it. You know, like, you just have to just sort of have to know. And that comes with time and experience just like with the driving. Yeah. And Kevin, give me one second, I have something making noise in the corner of the room that I can stop. So I'm going to be right back two seconds from now. That's good. Oh, come on, you know, I was gonna put the ad here. It's about time and there was a break in the show. It just makes sense. Problem is I'm still live on to the weather. I need some motivation to, I know what I'm gonna do. I'm gonna I'm gonna sing and I'm a bad singer. So get ready for this. First like lesson, we feel that music done.
It goes, boom, ba doo, ba doo, doo. And I'm gonna start talking now. The pod is fantastic. It's a tubeless insulin pump, they are going to offer you a free demo, all you have to do is go to my on the pod forward slash juice box. That's where the person had to breed. They're sorry. They're going to send you out a free no obligation demo pod.
Unknown Speaker 24:21
You
Scott Benner 24:21
can try it on and see what you think.
Unknown Speaker 24:26
giving, giving, giving.
Scott Benner 24:27
Yeah, God, I love it. Like I'm saying, then you call them back and say, and I'm the BOD was pretty cool. Let's move forward and get myself untethered. I want to make small adjustments to my blood sugar without having to inject all the time. That's what I want to do. And then they're going to say, Okay, and then that'll sort of be it and you'll be using an insulin pump. I don't even hear the music. My omnipod.com forward slash juice box. Nowhere else Someone's singing so poorly to you about something so important. Go to the link in your show notes. Try it today. There's no obligation, it's absolutely free. There's no reason for you not to. I'm guaranteeing you, you're going to be happy you did. Alright, let's get back to Kevin. Had I'll never sing again, unless I maybe do it in the next ad, cuz I think I'm on some medication for my head call. I'm sorry about that, but that's much better. And it wasn't baisley didn't have to gag at all. And so, how do you do that with MDI, though? Like, how do you bump like, I know what I do. You know, this morning, this morning, Arden's blood sugar was coming down the stairs from school, for school, it was like 110, and it started to drift up. So I gave her some insulin, it wasn't enough. So half an hour later, I text her back, I said, do a little more, it ended up being too much she went down to 70 strike a little bit of juice, she came back up the 90 like, but how do you do that with injecting your son or snapping with you? What do you what do you do?
Kevin Conroy 26:00
Yeah, so it's, it's definitely it's definitely harder when he's at school. Because the, you know, the doctor's orders are just a dose at meal time. Or if he's you know, Sky High, you know, over 300, then we can get a correction dose called in. So, you know, primarily, this is something that we're doing at home, uh, nights and weekends and over the summer and breaks that sort of thing. Because there's less, you know, I've just got less control when he's at school. And that's okay, for now. So, you know, mostly what we do is we're looking at, trying to manipulate the variables that we can manipulate. So Pre-Bolus thing is a huge part of our strategy now, and it never was before, because typically, when they say MDI, they say, you know, especially with young kids, some of the recommendation is to wait, at least in the initial education, wait till after the child is done eating, because, you know, you don't know what a picky two year old is going to finish on their plate, right. And so if you, you know, are giving a dosing for, you know, say, 40 carbs, or something, they only 10 carbs worth of it, you might have a pretty big problem on your hands, you know, an hour and a half from now, especially if you don't have a dexcom. And so, you know, they're out an abundance of caution, which I don't fault them for, are advising, you know, you know, taking a safe approach and kind of, you know, keeping things out of high risk zones, but still, I would argue risky zones in the long term. You know, they're getting rid of the acute risk and trading enough for for long term risk. So, you know, a lot of what we're doing is now saying, Okay, well, let's, let's Pre-Bolus him as much as possible. And then let's also do what ever micro dosing we can do with MDI. So we've got, we've had two different insulin pens that we use, and we had no analog, and then we ended up switching to Hema log, which is a whole other story, but, you know, we can get half unit dosing on that with the insulin pen. And that, that works pretty well. He's also he only was my son when I was 50 pounds right now, 51, something like that. And so a lot of his mealtime dosing is, you know, only two to five units. And so a half a unit can make a fairly big difference for him. And, of course, I mean, me sharing the dosing does not super helpful, because everybody's dosing strategies is completely, you know, dependent upon, you know, what, what their experiences and their body type and you know, what works for them. So, you know, don't don't use my dosing as a guide for your dosing, but I provide that just to, you know, give you, you know, kind of the context, right, in terms of what is a half unit mean? Because I think, you know, probably for grownups you hear a half unit, and you're like, well, what's that half draft gonna do nothing. But for somebody with, you know, smaller body mass, a half unit can be a lot. And it can be quite effective to turn 180 into 100. Overnight, which can be helpful. And so part of what we did is really try and understand what his ratios are in terms of insulin and carb sensitivity. And I think taking the time to really do that thoughtfully over a period of a couple of weeks, and I and you have to continually update it as kids are growing. But understanding that giving him a unit of insulin for my son will reduce his blood sugar, about 100 points, all other things being equal, and giving him one carb will raise his blood sugar, about 10 points. So understanding that dynamic has led us really take control of things now, that can vary from day to day, depending on whether he's got growth hormones, or you know, how active he's been and all those other things. So it's just like our starting point for how we're handling stuff. But you know, in the middle of the night, if he is at, you know, 200 you know, a few years ago, that's great, that's awesome. And now it's like 200 is too high. I don't want him sitting at 200 all night I needed. I want to try and get that down to you know, 120 or 100. If I can Even an ad, it's possible. But I've also noticed that, you know, he's his diabetes can tend to swing a bit. And so I like to leave a little bit of padding on it. So I try not to hang out around 70 or 80, which I know, you know, some, some pumpers have told me they can do quite well. And so 100 hundred 10 hundred 20 is a little better for us right now.
Scott Benner 30:25
In terms of sense, where you're able to see is that's exactly matches up.
Kevin Conroy 30:30
So yeah, exactly. And in part not, because I mean, I'd love it, if you could write it in at it's not that I've got anything against that. But I have just found more often than not that, you know, if I if I try and write in the ad, he the floor can fall out from under us more often than if I let them right at 100. So just searching for that stability, so that we can all get a good night's sleep, right is the goal.
Scott Benner 30:52
So is there really no, is there really no secret to MDI other than you're seeing, you know, because you have the next time, you can see what's going on, you can make adjustments, and you're just willing to inject more often.
Kevin Conroy 31:03
I mean, for us, that's been it. And, you know, I should say, you know, that's not been necessarily the doctor's advice. But, you know, we kind of went wild west and said, you know, well, let's, let's just try giving him a half unit or a unit outside of mealtime. Because it's it's not a lot of insulin. It's not like we're crashing, and then with the Dexcom, once we got good enough at Dexcom. And I should also emphasize we didn't start this the day, we got the Dexcom.
Scott Benner 31:28
You know, we got photo, the first couple weeks just started going, I have no I don't know what I'm doing again. Exactly
Kevin Conroy 31:33
right. And so it's, it's you need to you need to get good. I think, you know, the key to all of this is really making sure that you are getting good calibrations on your Dexcom. And you're getting really reliable data, I would not do anything that I'm suggesting until you are positive, that you know how to work index calm properly. And I think a lot of that is you just need some practice for a couple of months. Right? You need to know how to do insertions so that they work, you need to and you're not getting, you know, question marks or fail tensors immediately, which I think our first three failed on us. And my son was like, I don't want to do this anymore.
Unknown Speaker 32:08
Did you yell? I don't want to do this?
Unknown Speaker 32:12
Well, now we all agree on something. Exactly. Exactly.
Kevin Conroy 32:14
We've got that in common. You know, and it was, you know, turning to the, you know, the diabetes parents community, because there's a couple of great Facebook groups for that, as well as your podcast has been, you know, really helpful to help us, you know, understand how can we get the most out of Dexcom for our son. And so he was really scared initially, you know, of having the sensor inserted. And I know, you can't really see the needle unless you're looking for it. But it's still, you know, he still got the idea. Okay, great, I've got another thing that's going to be sticking something into me. And he was willing to do the first one we and we did the insertion. And, you know, for folks who have not done or, you know, if you've ever done a Dexcom insertion, or even if you haven't read that first time, you're going a little more slowly because you're not really sure what you're doing. You know, you pushing the plunger in, and then you're pulling back out. And so that needle stays in a little longer those first few times while you're getting the hang of things, and it hurts, it hurts more. And so it wasn't until we figured out that we could get numbing cream for skin and numb it out. But that really made him a willing participant in the process. And for me that has been that makes a world of difference in terms of level of care.
Scott Benner 33:28
Do you move faster now to when you're doing it?
Kevin Conroy 33:30
You're Oh, yeah, absolutely.
Scott Benner 33:32
Yeah, but, but I was just gonna say like, it's funny you as you were describing, and I felt like you were describing trying to pop a really thick balloon with adult toothpick because you just instead of just like bang like you have to go You have to depress that plunger by the way. I'm pretty sure that by the time the next iteration of the Dexcom comes out the inserter will be automatic. Yeah, so But But to your point you're introducing something to your to your son that's you know, he doesn't have an insulin pump so he's not accustomed to having something attached to so there's that plus that's gonna stick into him so there's that his framework for that is the needles he's young and easy thing I don't want to do this you know, what are you gonna explain don't know you don't understand?
Kevin Conroy 34:15
Yeah, I can get all this great data 24 seven now.
Scott Benner 34:19
Daddy Daddy Daddy's gonna go to sleep on time soon. asleep like three hours in a whole row and make a big difference and yeah, so that Yeah, there's no real way to talk them into you know, it's I'm always I'm a huge fan by the way of bribing. buying your way in if you have to I you know people all the time like oh my you know, we want to try an insulin pump up my son or daughter know, someone told us give them money or things their children just just ply them with things until it's over. And you know, it's a really weird line to walk and I think you did the right thing. You found a way to make it work because I have heard people say, Well, we didn't end up doing it because they didn't want to You know, in earlier episodes, I would say all the time, like I just, I have a hard time imagining if the doctor said, Hey, here's a pill that you have to swallow to be healthy. And my father gave me saying, Oh, no, it's too big. And my dad goes, Oh, it's too big, he doesn't want it. Forget it, you know, like, I have this image in my head of my laying on a countertop, just, you know, somebody forced feeding me a pill, which never happened to me, but I'm assuming that that's where my dad would have when at some point, and finding the center to that idea, not not going all 1970s on on kids. You know, like, there's a moment where you have to make a better decision, like you're the you know, what this is gonna do? And you have to find a way to artfully get to where you are now and no numbing cream. Sounds like it was a big deal for you. I we've never used it. But I know a lot of people do with a lot of success.
Kevin Conroy 35:47
Yeah. And I had, I don't know, thankfully or not, but you know, in the last month or so he said, Hey, Dad, what's on his own, he just came up to me because I told him we needed, you know, to do new sensor insertion because it was, you know, seven days, Rob, and he said, Hey, Dad, let's try today without the numbing cream. I said, Are you sure? I said, Yeah. And so we did it. And you know, he flinched a little bit. But he, you know, I've gotten more accustomed to the idea and he was more used to it, and so psychologically ready? You know, then I'd Jinx myself, because we did a new one last night. And it it, you know, hurt more than usual, I guess. I don't know, maybe I hit a nerve or something. You know, literally,
Scott Benner 36:22
this Dexcom ad is brought to you by my Confidence Index calm. I put it right here in the middle of a moment where Kevin's talking about Dexcom and saying, Oh, I hit a nerve with my son, he flinched. That might make you think, Oh, I shouldn't do that. No, meaningless. The good that comes from Dexcom is so immense, that a tiny bit of an uncomfortable moment, a moment in a full week. It's meaningless. I wouldn't even think twice about it. I know people do this. So I bring it up. Some people say oh, I don't want to be attached to things or I heard it hurts. Doesn't hurt. Point is, you listen to this podcast, you understand what I'm talking about? You have to understand that most of the way I manage this is the the information that comes back from Dexcom. I don't know how many low blood sugars Dexcom stop. I don't know how many spikes, tax commas. countless, countless, countless, countless, the information that comes back teaches me more every day about how to manage type one diabetes. The share feature is immense. My daughter is at school right now blood sugar, 105. nice and steady. I know that because her Dexcom g five shares information through the cloud that I can see on my phone that's available for Android or Apple. You cannot, you cannot, you can not do better than a dexcom g five continuous glucose monitor until the G six comes out. But for now, g five. It's the bee's knees, my friends dexcom.com forward slash juice box with a link in your show notes.
Of course, way outside of medical advice. Have you considered restarting the sensor at the end of the seven days?
Kevin Conroy 38:15
We have. And so we used to only do and this is where any of the Dexcom folks are listening, right? They're going oh, that's not FDA approved. And so I'll acknowledge that right now. But, you know, we had done just the abdomen and we were getting a lot of failed sensors are getting a lot of triple question marks after a few days. And in large part, I think because my son's a real skinny guy. You know, he lost he lost some weight around diagnosis. You know, even though we caught it pretty early, and it's just, he's not gained a lot of body fat. And so we ended up trying his arms and that has worked really well. We're getting fabulous readings. From there. Once the sensors had a chance to you know, get out of first 24 hours.
Scott Benner 38:59
I honestly don't know where the FDA says to put them but Arden only wears hers in her hips. So yeah, he's never put them anywhere else. It's you know it too, and you should see some weight gain. When you're
Unknown Speaker 39:12
sorry about that.
Unknown Speaker 39:14
There's I know that
Scott Benner 39:16
she's eating she's not eating fast enough. You can um, was I gonna say Oh, Baba, bah bah bah. yonder hips. I'm now going back through my own thoughts. Sorry about that. What was I gonna say about the about the sensors and oh my gosh, I'm gonna have to come back to it. I completely lost my train of thought when it first 24 hours. Now it's gone. It's gone. Kevin, I'm close to forgetting your name in this moment. My brain completely reset. I
Kevin Conroy 39:52
don't really happen to be it. This is a cost to type one, right?
Scott Benner 39:55
Yeah. Oh, please. I was Arden played softball weekend. And it wasn't just softball it was tournament's that were an hour from the house. game started at eight had to be there at seven to warm up. I was getting up at five in the morning. And, you know, rousing her out of bed, which looks like looks like a crime when it happens, you know, because you're just like you have to get up you have to get up just like and you're like no, no, I'm I get up at the you know, you've got the house near race down the highway and you get to this thing. And she plays three in a row. And the first day, it wasn't too bad. Actually, the first day in the afternoon, her blood sugar sat at like, 85 through all the games. Wow. And then I was just like, Oh, this is going great. But it's going to go sideways on me at some point, like I really know it's going to, but she gets in the car and she was hungry. And I you know, listen, if anybody doesn't believe it, I took my own advice. Like, you know, she ate food and I Bolus word I didn't give her all of it. Because I knew she was gonna get low. I gave her some, and some was still way too much. We got home and she got low and we had to address it and it was fine, you know? Right. But, but then overnight, she was okay, I did some bazel adjustments that kept overnight Okay. And then the next day, like right back to it again, like five o'clock in the morning get up she and are down there. They play this real early game that ends at 930. And we end up at a convenience store where she buys this big sandwich and what does she have sandwich cut up fruit chips, and something else. And then she's you know, I gave her insulin for and she starts eating and then she gets about halfway in the sandwich. She goes, this isn't very good. And I was like, Okay. All right. So it's like jack cutter bazel off trying to catch up. And by the time it looked good, and then going into warming up for the next game. I was like, Oh, this is not gonna work out. Yeah, so she ate a banana. Real quickly before the game started, I actually ended up shutting her bazel off a little longer. And actually, that game she played. That one was a little more on the cost. She played at 75 for a little while. And then she drifted up over 80. And then when she was eating in the car, I learned my lesson and I didn't give her as much insulin driving home because they lost that last gamma. And it was just, you know, it was it's a it's always a learning curve. But then I really used what i what i saw the night before to avoid any lows last night. We didn't have any lows overnight last night. So I slept really well overnight last night. Yeah. Which was why I'm upset that I lost my train of thought because I actually woke up this morning. Yeah, first thing I said was I feel really rested. Like it was almost at a point where around 5am I opened my eyes from it. I don't have to get up till seven during the week, and around five and I was like, Huh, I could get up now and be okay with this. And I was like, but I wonder if I could go back to sleeping or to try to bank them for tomorrow if I can, which I don't think is how sleep works. But But nevertheless. Okay, so you guys are, you're just you've made the conscious decision to inject more frequently. Yeah, and and so you are, you're still sort of acting like an insulin pump with on a rudimentary level being in as much as that you're, you know, because a lot of what a lot of people say is, well, when I get a pump, then it's not such a big deal to Bolus for a small snack or I could throw five carbs or something in my mouth and give myself a tiny little bit of insulin or my baseline. So you don't have to control your basal rates, obviously. But But you are have just made the conscious decision to inject more, how many times a day do you feel like you're injecting?
Kevin Conroy 43:27
I'd say probably at least five. But you know, some days maybe it's as upwards as 10. And many of those are going to be small doses, you know, happiness, the unit unit and a half. Yeah, exactly, just little bumps. And really, it's it's about knowing, okay, maybe a half unit or unit is going to be too much for him right now. Maybe there's a little bit of stalking that's going on with the insulin. So as long as I make sure that I've got fast acting carbs nearby, and I know what he's about to do activity wise, we can really leverage that, you know, and get us into the numbers that we want and keep him within our wider range that we're aiming for right now in MDI. You know, I suspect whenever he does get a pump will go, you know, really tight, you know, 80 to 120, as I've heard, some people do, but, you know, right now, I'm trying to keep him between 70 and 200. Okay, okay. And so you don't, when you bump you bump over 200 I'll I really let the curve, do the talking. So if he is rising quickly, you know, then I might throw an extra unit added, because maybe I just guessed the wrong number of carbs for the meal. And and when I say guest, I mean, I have a food blog where I have calculated down to the exact carb, every single one of our family recipes. But sometimes, though, right, it's sometimes it doesn't matter, right? It's just, you know, maybe we got the Pre-Bolus off by a few minutes, or maybe he's just got human growth hormone going on. Or maybe he's coming down with a little cold or something, you know, you can never tell what the day is going to throw at you. Or all the other variables that you can't See? So for me, it's just Okay. Do we have the right trend line going on? And if it's not the right trend line, what action can I take to get the trend line back into some some sort of way that I want? And so if he's starting to go up also, you know, we look at, well, can we have him go play outside or run around at all, we've got a small trampoline in the house, you know, just a real, you know, little one for indoors. And for whatever reason for him to tramp jumping on a trampoline will drop his blood sugar faster than any other activity we have found. When he goes to some of these trampoline places for birthday parties, you know, I bring like four or five juice boxes, and I'm just you know, before even though his number, his numbers are flat, before he gets on, and like, just drink this juice box, because we need to get ahead of this. And sure enough, he'll come back 20 minutes later for, you know, Smarties or Jolly Rancher or something, because he's already dropping, even with the juice box on board. So that sounds
Scott Benner 45:53
about right, it really, it really does. And you're handling it correctly, too, because you've reverse engineered the the insulin idea for the carbs, right, like, Yeah, because if some for people listening here, we're Kevin just said, you have to time the insulin correctly and Pre-Bolus correctly so that when the food starts affecting your blood sugar, the insolence and they're having a fight, and on the flip side, you have sometimes you have to time the carbs correctly so that when activity, or something like that is causing a drop, you can also get that fight happening at the same time, so you don't drop and then come back up. But maybe as the activities trying to pull you down, the carbs are trying to pull you up. And maybe that's how you say stable. It's the same idea. Just moving the moving the ingredients around a little bit. Exactly. And that's that's a huge credit to you, because because you haven't been at it that long with the Dexcom. It sounds like three endo appointments, and one more coming. Yeah. And you figured all that out that quickly. That's to be commended. That's that's really fantastic. Now imagine had someone told you that four years ago? Right, Dan, what do you think now you're you're really clear headed guy. And you're really good at describing your thoughts. So let me ask you a question. Second is, you know, first endo appointment after after you're diagnosed, it's three months, and maybe you're there for the first time, someone would have laid this out for you. Do you think you could have accepted it back then?
Kevin Conroy 47:22
I don't think you I think this is something you have to get to iteratively. And I don't mean that you can't that you everybody has to go figure it out for themselves. But I think it's again, back to that firehose of you know, in the hospital initially, if somebody just blasts all this information at you. It's really hard to do. And I so I think it's, it's taking it one step at a time, right. So step one is get your Dexcom. Right, figure out how to insert it, make sure that you understand how to get good calibrations. And I think that has been actually figuring out how to calibrate the Dexcom has been, I think one of the biggest secrets to our success, which is you know only calibrate, when it's level, make sure that you don't have you know that you didn't just have a lot of physical activity, that's going to be dropping your blood sugar, make sure there's not, you didn't just eat something that's going to make the blood sugar spike. You know, I think you know, sticking with the driving analogy, I always think of it. Because you know, for folks who don't know, Dexcom, and all CGM measure the glucose in your interstitial fluid, not your blood, which is what the glucometer does. And there's like a 1520 minute delay depends on the person and the time of day and all that other stuff, in terms of when it's catching up. And so I liken it to if you're looking at the traffic on a highway, right? And it is your the cars you're seeing they're left to their houses 15 or 20 minutes ago. Right? Yeah. And so if you want to control the flow of traffic, you could tell every, you know, you could tell that all those carbs to stay home and not get on the highway of the bloodstream. But it's going to take 15 minutes for that to to happen. And so if you more if you see lows coming, right, and you give a lot of you know, you give the 15 fast acting carbs, right, which is the standard line. The reason you have to wait 15 minutes to check is because it's going to take the body that much time to get it moving in there. And so making sure that you're calibrating your Dexcom at the right time, when you don't think there's a change that's about to happen, has given us the best numbers and that has given us the confidence to be able to be a bit more aggressive with MDI. Because we we can trust the data more
Scott Benner 49:35
you feel like the data coming back is is something that you're not it's not such a coin flip that you'd like that wonder if this is how correct this is and I'm going to start pumping in more insulin Am I right and all that stuff, right? You can even hear when I did Ardennes. When I did Arden's insulin for her for lunch, I hedge my bets too because I couldn't see her blood sugar for 20 minutes or so. So I was going off of what it was. Now, when it finally came back, which we never talked about was, I was off, it wasn't 90, it was 70. And so she hit 70. Now, by this point, her blood, her meal is done, she's eat. And the eight units I gave her are all in, probably only half of them are pretty active right now some of them are still probably just kind of coming online or starting to work or anything like that. She went all the way down to 60. And she's level at 60 right now. And I know that in the next two, or I would say one or two readings of the Dexcom, I'm going to see a diagnose up arrow. And I'm assuming she'll be more like 75 or 80. By the time you and I are finished talking. And you know, some Listen, a lot of people might hear that and be like, That's insane. I'm not doing that. And trust me, I would have felt like that at a number of points. But to your point earlier about just, you know, timing, the you know, just experience over and over again, I am, I am a person who's completely, you know, concerned with my daughter's safety, as I'm sure everyone else is. And I've seen this enough times now to know that this is going to go the way I expect it to. And if it shouldn't, if it should be that one time or the you know, because there's going to be three times this year that I make a mistake or it doesn't happen the way I expect it to or whatever else and it's gonna need some intervention. At least there's time for the intervention still, like, you know, after our softball game on Saturday, she was really loud. And and at the same time, it wasn't even. You know, it wasn't that big of a deal. If I told you that, yeah, that, you know, her blood sugar was it was crashing down Falling, like under 40. And I was out picking up dinner and my wife texted me and she's like, hey, she's really low. I gave her a juice. And I was like, and she goes, and I just shut her bazel off too. And I was like, okay, and you know, I said, just test again in a few minutes tested again. And she's like, she's still really low. I gave her another juice. And I'm like, Okay, now, Kevin, that's not something that happens around here. Hardly, right. But But I came back in the house with Chinese food. And her blood sugar was, we tested it again, it was like it was 70 because it was coming back up, there was plenty. Now there's a lot of juice on board. I bolused Chinese food, one of the juice boxes doubled or bazel rate. And I went right back into it again. I didn't I didn't like I didn't skip a beat. And we did not get high from the Chinese.
Unknown Speaker 52:29
That's fabulous.
Scott Benner 52:30
You know, that again, it's just it's having done it over and over and over and over again. Like I know the fear, like oh my God, my her blood sugar was just 40. Right, that was probably gonna get a lot lower. And but here's this food, I know what this food is going to do. And if I let my fear take over right now, her blood sugar is going to be 400 before I blink, Mm hmm. I can't let that happen. So so I just have to trust the foods going to do with the foods going to do the insulins going to do with the insolence gonna do, I took some experience I have knowing that she came off of a lot of activity, and I kind of tempered things a little bit for that. And I was much more careful afterwards, you know, and as soon as her blood sugar leveled out where I wanted it while she was eating, I shut off for Temp Basal. And, you know, and it just did all of that I just kept doing all those little things that if I put myself back in my, in my headspace from, you know, seven years ago, everything this mean now is saying sounds insane. You know, and and I sometimes I just tell it over and over again, because I want people to know that there's going to be a date just doesn't seem that insane anymore. Yeah, you know, and and you said something earlier that I wanted to comment on for a second, I hope you don't mind. nobody talked about how it um, you know, this understanding that you get just comes slowly. And it really made me think about the podcast a little bit like, why is the pot like, why am I hearing from people who are like I was completely lost? And six months later, I wasn't? Because that's a fast turnaround. Right? Yeah. And and of course, it's how, you know, if they're bingeing the podcast, it's how much quicker they get into it. But I think that there's possible that if you just went I'm gonna make up a number out of nowhere. I don't even know what Episode 15 is. But if you go listen to that one, yeah, you're not going to get this magical understanding of diabetes. But there is something about listening to the conversation build like there's, you know, I didn't sit down I'm not NPR I didn't sit down and, you know, hammer out what my first 50 episodes path was going to be that you. But if you sit and listen to the conversations, I begin to tell the story better. I begin to ask better questions that get other people to tell their story better and when you listen through I think it's the process of listening through it that gets you to that spot. And I just didn't expect that when I did that. When I started the podcast the understand.
Kevin Conroy 54:54
Yeah, and and for me, it's been as I've listened to, you know, more episodes and thank you for doing this. If I haven't said that already, you know, it's been hearing, you know, week after week, different people tell their stories about how they're managing it and how they're not settling for, you know, an A one C of nine. Right? And when what can you do to get down to the eight, get it to the seven, get it to the six, get it to the five, right, whatever, wherever you are, right? What can you do to get one, you know, a half a one c better or full? A one c better? And I think that has been, and part of, you know, what I want to feel compelled to share, right is that, you know, I'm in all of our currency and you know, full credit, you know, to you on that. But, you know, if you're not at the end, you've said it before, right? If you're not at the six yet, that's okay. Right? Take wherever you're at and try and just get a little bit better. Right. before your next point, no way
Unknown Speaker 55:49
to leap forward. You can't
Unknown Speaker 55:51
Yeah, and can
Scott Benner 55:53
you believe is it certain people, certain people and how their brain works and how they understand things can fast forward by listening? Like, because I'm getting enough feedback from people that says that says that to me that like, you know, I power listen through. And it made sense, I had to go back sometimes. And what I mean by fast forward is, it took me two years of my daughter's initial diagnosis, to come to the point where I could like comfortably get her in the eights. And think and think that I was like, in some odd control of that, you know, and but then the, the new things that came online that we talked about, you know, in the podcast, and it's not even worth coming up with examples, but like the things that we figured out Pre-Bolus seeing timings as important as the inside, not being afraid of the ins and all these other things, I could sit here and just list over and over again, they came to me so slowly over time, but apparently, when someone's telling you about it, if you can accept it and process it correctly, you can that's your fast forward, like, you know what I mean? Like that's you don't need these years to because look at your a great example, it took you four years, just to say, wow, I don't think this is what we should be accepting. Let me look into how to manage that better, and that I don't think there's anything wrong with what happened to you, I don't think you made a mistake or anything like that, you know, I just think that that's the, that's the life, you know, path of this thing. You're not just sitting, looking at your son's blood sugar all day, you've got a job and your house needs, I'm assuming you sweep the floor once in a while, you know, and all these other things. And, and so it takes this long to get to that idea. I just I'm thrilled that the that the thought that it's possible to speed it up a little bit, you know, because then I in my heart, then when I when I feel like is it there's no little boy sitting on the floor in his living room? His blood sugar's 300? It doesn't need to be exactly,
Kevin Conroy 57:39
you know. So, exactly. And I think that, you know, back to what I was saying, like, you can control the carbs, you can control the insulin, you control your attitude about it. And I think what your podcast has done is help people see, oh, wait a second, the attitude is not a fixed thing, either, right? It's not just 15 carbs, 15 minutes, right? I can I can take a different approach to this. I can challenge maybe some of the more static thinking that has happened in you know how to risk reduction, you know, that that many? well meaning endos provide, but that maybe hasn't quite caught up with where we're at technology wise, right? Because the guidelines we were given when my son was diagnosed nightscout didn't exist, right? So they didn't they didn't give us the advice of, well, what can you do differently if you can just glance at your wrist and see your son's glucose? Right. And so that opens up a whole different world of actions that I'm able to take, and interventions that I can provide for him. You know, and it's funny, even to we, as part of a study we did, through children's, we got a Fitbit for my son and for the rest of the family. And my wife wisely came up with the idea of, there's no screen time until you hit your 10,000 steps for the day. Okay. And so that led us actually start to quantify the impact of physical activity and play on his blood sugar. And we still, I mean, no, we don't hold it that everyday, right, you know, Saturday mornings, Mom and Dad want to try and sleep in whatever we can. But, you know, it lets us see more around, you know, if he's going to go outside and play, how does that impact his blood sugar and it forced us to really start, you know, thinking about that and using that as a tool in our tool bag, and it really, I think, at least in the MDI right, at first you think okay, all I have are insulin that I can give it meal times and fast acting carbs if it goes off. And that is a very limited toolset. And so expanding that to have the CGM data, but also thinking around are, hey, I can give small units of insulin because it's not dangerous, right? It's not high amounts, if you're not stacking big, you know, big doses, for whatever the person is, if you're not going at it with a high you know, high numbers of carbs. You know, and that was, that was a thing. You know, I think that, you know, I learned on your podcast really is, you know, don't come at it with 15 carbs necessarily try five. And and maybe that's good enough. Yeah. And that, you know, for us, you know, you know jolly ranchers are now his go to, to bring up a low because they're five carbs and it takes him you know five or 10 minutes to suck on it. So it actually that's kind of a slow release five carbs at that. And it gets him back to where he needs to be most of the time. And we still got the juice boxes on hand if we need them and, you know, a soda in case one direction or something but exactly, yeah,
Scott Benner 1:00:37
but bumping nuts, right like just that like just a little bit art. And she bought bubble gum for the for the softball this weekend. And it had it had sugar. And I was like, that's great, because then I can still stay aggressive with their stuff. And she can chew the bubblegum and it kind of offsets the drop that wants to happen. Yeah, and just little things like that. Like you said it before, like, you can't fault the doctors 1515. You know, the 15 rule is what it is because they're not with you in that moment. And that rule is probably I'm guessing, derive from the idea that Okay, look, how much would save a life in a bad situation get probably 15. And so that seems fair. And then it gets set enough. That seems like law, you know, and then before you know it, the school nurse says, oh, I've seen it on so many orders. I know, it's 15 they don't know anything about diabetes, you know, 50 must be 15. It's on every one of the orders. And then and it's easy to, to dovetail back to what you're talking about with your brother in the beginning, just sort of out of sight out of mind a little bit like, you know, like, oh, that these papers say 15? I do 15 none of these kids have died here. 15 is the answer. And you know, right and and if 15 is taken one kid to 90, because they were going to fall faster. That looks amazing. And then while three other kids are going to 250 at that school, and nobody ever thinks twice about it. And then you have doctor's orders that won't even let you adjust until you're what would you say? 300 300? Oh my gosh, that would make me mental? Yeah, and I'm sure it does you a bit too bright. Yeah, they're dead days. So have you ever have you considered going to the nurse and saying, look, we're going to the doctor and say, Look, I want these orders to be changed.
Kevin Conroy 1:02:14
We looked at it. He's in kindergarten right now. And so we've just been trying to, you know, look at, you know, trying to minimize things. And it's also the kind of thing too, you know, he's checking my watch right now. He's He's 216. Right now, after lunch. He had lunch maybe an hour ago. And he's got two units on board. And so that'll pull them down a little bit. But, you know, if he's got PE or something, he can lose 100 units in 30 minutes. Start hundred points in 30 minutes, right. So it's, it's again, it's it's understanding, like, what's the buffer that I need, given that he's remote from me, and I'm not hovering on him, so I get less, much less aggressive with it. When he doesn't have a parent around?
Scott Benner 1:02:51
Does he think differently? Do you think? Have you ever have you ever had that? Like, I know how easy it is to have a conversation with a kid in kindergarten? But
Kevin Conroy 1:02:58
yeah, I mean, we've tried it. He says he feels fine. I think he's gotten adjusted to some of the highs, right, which is, which is a bit of a danger. But you know, the other day he hit 400 for the first time and I don't know, maybe even a year. I like to think it's a year I'm sure. You know more more than that if I go back through the CGM data, but you know, is 400 middle the day just you know, we had, I don't know what happened, just the lunch hit him the wrong way. We tried to you know, put more insulin at it, but it just it wasn't catching up fast enough. And, and he was there and he just felt awful. You know, he was he was hot, he was sweaty. And he was just like, Daddy's you know, something's wrong. I was like, you know, it's your blood sugar's just really high buddy. You know, this is why, you know, we say no cotton candy, which he didn't have cotton candy, but it's like the one food he can't do. Because it's, it's just, you know, it was too hard. And so we threw, you know, an extra three units at it and give him water. And, you know, eventually he came, you know, double arrowing down. But you know, a big part of that was, you know, since I've got it on my wrist, I don't need to, you know, interrupt his play to have him come over and have me check his Dexcom I don't have to pull my phone out of my pocket and unlock it. And, you know, go check the share app, as great as it is. I can just glance at my wrist, you know, every few minutes, and I don't have to touch anything. I don't have to do anything. It's just a quick glance, and I know where he's at. And so when I see he's, you know, part of what has made the MDI stuff work is is if I see if we've had to aggressively correct a high that he's gotten because that's just part of what you get when you don't have a pump. And he's double arrowing down on 190. I know for him, if I intercede with a quarter cup of Gatorade. I can I can land that plane at 100 Yeah, right he will cut he will pull up out of that nosedive in the next 20 minutes and he will level out right where I want him to back in range. And if he and if he you know if I if that's not enough, and I do another quarter cup Gatorade or you know half cup Gatorade whatever it is, which is we have found you know, and part of this is like finding what are the right fast acting carbs for you or for Your child, right to respond to those situations. And so we know Jolly Ranchers and Smarties and Gatorade work really well for him. They're our go twos. But everybody's different.
Scott Benner 1:05:10
So it's there's so many different things that you can use to, you know, and different situations call for different things to like, last night at the, you know, again, the end of a long weekend a softball, and she comes home, we both after to 5am, we got home at one o'clock and I said to my wife, I'm like, I'm woozy. I want to lay down. So R and I both lay down on the sofa. We slept for like three hours, which not a big thing. And my wife kept Arden's blood sugar good while she was sleeping. And when we woke up, had something to eat. And she did her homework and got a shower. And at nine o'clock, she's like, I'm really hungry. And our blood sugar wanting to be low, like it was giving me that it was giving me that feeling like it was it was gonna push down. And I said, What do you think you want, she thought from and she said, I'll have a couple of chips with like some friend Johnny Depp. And I was like, okay, and she ate that, and her blood sugar just didn't move. It's like ha, and then she said, I want some cut up fruit and said, Okay, so give her cut up fruit. And that actually raised her up a little bit, to the point where I had to give her a little bit of insulin, and she was so good overnight, and then she woke up this morning and it but you know, a doctor's not going to tell you you know, what you need here is a nice combination of ruffles and cantaloupe with a little bit of info, because other people are listening, we're like, oh, I, I worry about the fats and the glycemic index. And I mean that all stuff works, I just can't keep stuff like that in my head. So I just know, you know, traditionally what works for us here or what this is going to do or what that's going to do when you get to that point. So much of this goes away. It's just it's it's fabulous. Like, even right now, you know, talking about instex come in and talk about next time, sometimes it can be right on it right off. It was it was 12 o'clock. So we were 40 minutes past her. The 12 1210 we were 15 minutes past the insulin you heard me give her at the beginning of the eight. And I know what she ate. I know when she ate it. I know the whole time may have and I'm like man, why is her blood sugar not in the 80s. And I'm sitting here looking at a 6055. And all of a sudden the 55 went to 42. And I'm like, and I texted I said hey, test your blood sugar. You know what it was when she tested 82? And so I'd say that because listen, the deck sounds beautiful. It's fantastic. Because it could be off a little bit once in a while. That's no reason that I want to turn my nose up at that law. what I'm telling you is that because of the Dexcom I've seen lunch happens so many times that even when the technology tells me one thing, I'm like, That's not right. I I'm more in tune with it, then then I don't even know sometimes you don't I mean, like and so that's, that's a great place like you get into that spot I think is amazing. I think you will you will send me an email one day and say, Hey, I figured out how to let my kitty cotton candy. I really do. Yeah, you know, and I think that's just the you know, not only the the day to day, moment to moment, safety and, and education that the technology can provide to you. But at some point, there's a you're learning in ways you don't even know. You know, like, I don't even I don't even get afraid of the two hour warmup period. Like I used to because I'm like, No, I can you know, if I test here and here, it'll be Yeah, you don't even so it's just it's it's the repetition. It's fantastic. It really is. Kevin, you were fantastic. By the way, why do you sound so good? What kind of a headset do you have?
Kevin Conroy 1:08:33
I've got a blue microphone.
Scott Benner 1:08:35
Oh, you're using the like this? Nope, not the snowball. But do you have a good mic? I don't know. You sound fantastic. You record any audio over there? You just have a microphone?
Kevin Conroy 1:08:47
Well, I went ahead and stole the audio studio at work for this.
Scott Benner 1:08:52
Just you'll take it back.
Kevin Conroy 1:08:54
I'm assuming no, yeah, no, I did. I mean, I'm at work in the audio, you're
Scott Benner 1:08:57
actually working. Okay, that's, that's, um, I want to thank you so much for doing this. And I think that I mean, to kind of recap, you know, everyone, I get a lot of notes, how do you do what you do with MDI? How do you do with MDI and I went over, and I thought the only thing I can think of is you have to inject more. And we have a guy here who's doing a good job with MDI. And, you know, I think I pre approved out a little bit, what I'm saying is you have to inject more, you have to just be able to put it in some at odd, incremental times. And your son's good with it. He doesn't, he doesn't mind shots.
Kevin Conroy 1:09:29
No, he doesn't, he doesn't matter. We just do him in the arm, whichever arm we don't have the Dexcom in, you know, and he's, he's liked it. I think the one thing though, you have to be careful with if you're doing this is to be really careful about insulin stacking. We've had a couple instances, and this is just part of the learning curve process where, you know, we've, you know, we like we go out to a restaurant, right, and they have an appetizer course, and a main course, and then a dessert course and, and so with MDI, we're having to dose for each one. And I have found that, you know, because normally he I mean, he usually eats whatever's on his plate. He's good, he's good about that. Which is, which is nice. But, you know, if he packs his stomach full, his digestion seems to take longer slows down is what we've learned. And if I dose him for that dessert, even though it's got a lot of extra carbs, if I do it at the time, I would normally dose for something it's going to drop in. And we've had to use the Google gun before when that's happened. And so this last year, like two weeks ago, we went out to eat and he was having, you know, like, chocolate lava, you know, like cupcake thing. And I said, You know what, the last time we did this, he tanked and we got into a real dangerous flow, I'm not gonna wait to give him this MDI shot for his desert until I see he needs it on the Dexcom. Because at that point, he was about 100. And he had had like, five units on board. And, you know, he already had had maybe, you know, 60 carbs or something is gonna have another 30 carbs, I thought, you know, I'm just gonna, I'm just gonna wait this one out, because I'm worried about stacking effect. And sure enough, he leveled out at 90
Scott Benner 1:11:05
Yeah, you're getting close Kevin to being able to close your eyes and see what the insolence doing. And when that's done yet, that's, I think that's a fit, because that's where I would have if I thought I needed the insulin for that for the snack or you know, the dessert, then I would have extended it so that I could adjust it. So I could have cheated and bailed on it if I needed to. And and that's just that, I don't know that I could put into words, but I feel like there's a point you'll get to where you can say, Okay, I know what the insulins doing and it hasn't finished yet. Or I know there's some in there that's not being counterbalanced by carbs, or I right now, I know I'm being pushed back harder from the carbs, but these carbs are going to stop at some point and, and it's like a garden has, this year, she's, she doesn't eat sandwiches. So this year, Arden is taking a half of a bagel almost every day to school with her with some kind of like spread on it. And I can tell. I know when that the bagel is done being digested at this point, because then I had to give her a certain amount of insulin up front of the bagel within spiker, and then it holds steady. But then once that bagel is gone out of her stomach, it's not releasing, you know, sugar anymore. Yeah. I know, she's gonna she could go the other way. And so I just recently, I was certain most of the year that I needed nine units at this lunch to make this work. And we were always having to address at the end for a little bit of allow. And I finally just cut back the insulin for the for the Bolus to eight units. And now we're having like a much better, great another, a much better situation at the end, but but I was forced to figure it out because she joined the softball team at school and she had to leave right from school to go play softball. And so I was putting a bolus in at 1120 and 132 hours in sometimes we were having to cut her bazel off for an hour or so it was enough insulin to hold the food at bay. But then when it became too much, and she didn't need any more, and there's just all that weird stuff is it's so great. Like, I want to ask you one thing before I let you go We're over an hour night and I held you up long enough. But But you mentioned once that you do want to get a pump? Yes. So what stops you at the moment?
Kevin Conroy 1:13:23
I want him to get a pump. At some point when he's ready for us. He has had a great attitude about type one so far. And I have been we've been trying to you know, recognize that it is his body. Right? And it's it's his disease and yes, we're his parents and we're managing it we're responsible for his health and you know, completely you know, you know, take that seriously. But I also don't want to scare him off from the tech too soon. And so his you know, his uncle has a pump and so he's been able to see it up close and we've talked about it he's seen he said you know look I like the arm shots still, which is what we call it as we call it skim a log because that's where he gets it and he's you know, I don't mind that I don't want to have another device on me right now. And I go well, you know, look I respect that and if we're able to you know from there I said okay, well can I What can we do with with MDI can we get him down into the kind of level he has and so is put the challenge more on myself for a period of time to say okay if he doesn't want to pump yet how can I figure this out and so so far has endo is saying look you know you're below a 781 c you're great I don't need to fix this I'm in no rush to get you on a pump is new is new endo saying and she said you know we've got you know, we've got all the pump tech and and everything here so whenever you guys are ready, you know we'll get you set up you know and I'm hoping you know before puberty hits to that so I can write out the teenage years you know with a little more sanity but you know for right now you know he's he's able to, you know, just go and run around and play and not have to worry you know too much about the devices and You know, part of it was, you know, we figured let's start with Dexcom and get used to carrying around that expensive medical device on a young boy. Right? And then go from there. So
Scott Benner 1:15:08
yeah, I think I think you'll see in the, in the near future, that I think there's gonna be a big shift in, in the technology again. I mean, yeah, everyone's working on an algorithm further, exactly, Chris. And that's gonna be, that's, you're gonna see a shift again at that point, because so many of the things you're talking about right now as being speed bumps are impediments along the way, most of them less than pretty greatly.
Kevin Conroy 1:15:35
Yeah. And part of it is that, as I've learned more, seeing that the artificial pancreas is in the various projects are just seemingly around the corner. You know, it's kind of like, well, let's just wait and get the really good artificial pancreas pump. whenever it comes. You know, if it really is only 18 months to market still, you know, let's wait another 18 months
Scott Benner 1:15:53
to close. So you really are pretty close. Yeah, listen, I could listen, I could argue in the other direction if you want me to. I don't think you're I don't think you're making a mistake at all. I think you're doing a great job. So I appreciate you coming on and doing this and giving your time like you did and talking about your son and and what you guys are doing with MDI because I know there's a lot of people like you said we're in the situation, either because they want to be because they can't afford to be not B or B or insurance, or whatever it is what it is. So thank you very, very much. Thank you. huge thank you to Kevin for coming on the show. Also, thank you dex comment on the pod for sponsoring. You can go to my Omni pod.com Ford slash juice box or dexcom.com Ford slash juice box if you don't know which one of the forward slashes go in the show notes click on the link it'll take you right to it. I haven't said this in a while there are bold with insulin t shirts on sale at Juicebox podcast.com. You can follow me on social media at Juicebox Podcast or at Arden's day. Basically Instagram, Facebook and Twitter would be the places to look and say hello. Also the podcast grows when you share it with people who can use it. Please continue to do that. I know how much you guys do it. I appreciate it.
Unknown Speaker 1:17:06
Don't stop
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#151 Complications are Complicated
Nicole has multiple serious complications stemming from T1D...
Nicole has multiple serious complications from her life with type 1 diabetes. In this episode she lays it all out so that you can understand the real world impact of unchecked type 1.
You can also listen to the Juicebox Podcast on: Apple Podcasts/iOS - google play/android - iheart radio - or your favorite podcast app. Now on Spotify.
Follow Nicole on Instagram @nicgetsreal
+ Click for EPISODE TRANSCRIPT
DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hey everyone, welcome to Episode 151 of the Juicebox Podcast. I'm a little sick right now, so my voice might get funny, but don't worry, I was not sick when I recorded this episode. This episode of the podcast is sponsored by Dexcom. And on the pod you can go to dexcom.com forward slash Juicebox Podcast My voice is what are sorry about that. This is gonna be tough. Or my omnipod.com forward slash shoes box to learn more about both of these great products. They'll also be ads in the middle of the show somewhere all sound really funny. A quick heads up if you normally listen with a child, this might be one of the episodes you want to listen to by yourself before deciding if it's appropriate for them. Once again, I want to apologize about my voice that gets tired as I'm talking. Please listen through this episode very thoroughly. Nicole is going to give a masterclass here in being honest, and I don't think it's something you want to miss. diagnosed at 17 years old, she's 34. Now, she did not by her own account, do a very good job of taking care of her diabetes for a very long time to something that she regrets. But now she's trying to share her story. So you can completely understand what it means to your health. When your life takes this path, Nicole has multiple serious complications. She's gonna walk you through her life so that you understand how it happened. And I just want to tell her right now, Nicole, if you're listening, I'm just incredibly grateful that you did this. Thank you. Let's get to this. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before being boiled with insulin. And don't try to record the beginning of your podcast when you're sick. At the end of the episode, I'm going to read a couple of Nicole's Instagram posts that will update you even further from what she's about to tell you.
Nicole 1:49
My name is Nicole Egger, and I'm a type one diabetic. I've had type one. Since I was 17. I was diagnosed two days after my 17th birthday. And I have Omni pod and dex calm right now. So I guess my I've almost had diabetes for 18 years. Okay,
Scott Benner 2:11
I was gonna say so you're in your mid 30s. Right?
Nicole 2:14
Yeah, I'm 34.
Scott Benner 2:15
Excellent. That's your early 30s. What was I thinking?
Nicole 2:18
Yeah, I don't know. I already sometimes I think I'm already 40 at this point. So. So ain't like that I'm
Scott Benner 2:24
trying to figure out like, I always like kind of look back and try to think like, how do I meet the people who are on the podcast and stuff like that? And where does it start from? And sometimes it's me, I see people and I'm like, oh, that person there. Sometimes I get a lot of messages, okay to talk to this person. Sometimes it's a mix. You're just sort of known for being very honest about, I guess the things that haven't gone exactly right. With your diabetes. Is that? Is that how you think? How do you think of yourself? You know, inside of the diabetes community, what do you see as your partner?
Nicole 2:57
Um, well, in regards to social media, which, over the last two or three years has been something that I've been pretty active on. It's it's basically talking about complications, which I realize it doesn't make me always part of the cool group. You know, like, the cool kids on Instagram or wherever. But I feel like it's really important to get my story out there. And in doing that, I've learned I've met so many people or talk to so many people in regards to Yeah, I've got retinopathy, or I've got gastro precice or I have this or I have that. So that's kind of what I feel like, my platform is just the diabetes complications. Yeah.
Scott Benner 3:39
Okay. And I didn't know there was a cool group.
Nicole 3:42
Well, maybe that's, that's probably just in my mind.
Scott Benner 3:46
Now, I'm pretty sure I'm not part of it.
Nicole 3:50
No, you know, when I say that, and I don't want to offend anyone, because I, you know, I love the diabetes community. But I think that a lot of the organizations that are big, really want to represent type one diabetics, as everything's fine. You can live with this disease for a really long time, and nothing's gonna go wrong. And I sometimes feel like there's this not that it's pushed under the rug. I just people aren't talking about it. Right. It's not it's not pretty. Yeah, it's not pretty. So people don't want to talk about it.
Scott Benner 4:23
Yeah. So I think that I think that, that there's a couple of like, groups, right, there's groups who are trying to figure out how to live and how to manage and what's, you know, what's the right thing to do day to day, and I think there's groups who are just trying to be positive, which I think there's a lot of I mean, there's a lot of value in all of that to be perfectly honest, but I think that that you just it depends on what I don't know like, what lane you're in at the moment, like, you know, where's your head right now, but nobody is interested in wondering about the bad stuff. And right, because it seems like you know, I think I've said it like this before, but Have you ever met a smoker? Who thought they were getting cancer later in life? No, they always think they're the one right? who's like, I'm not, that's not gonna touch me like everybody, right? Doesn't get sick at the end, like, and so I think that it's, it's one of those things that people prefer to just sort of hope it's not going to be them. And, and and therefore, and it's I kind of get it like do you not? I mean, like I maybe I'm more than kind of get it like I but but there's a ton of value in talking about it. And right and I have my own perspective on that. But what forced you to forced you what, what not only forced what, what got you to start talking about it?
Nicole 5:40
Well, I think I think it's important to know, even before I answer that, that question, and let's come back to that in a second, if you don't mind, remind me is that, you know, I was diagnosed at 17 years old. And that's a big piece of this. Because, you know, I was not diagnosed as a child where I had my mom and dad, counting carbs, and making sugar free meals or whatever it was, and going to diabetes camp, I was practically an adult. So the way I was diagnosed, and the the people around me be either doctors or even my parents, or whatever, that triggered how I responded to my diagnosis. And it led me down this denial tunnel, right. And I did think I mean, I knew my blood sugar's were really high. I knew that was bad. And I knew that it didn't make me feel good. But I got stuck in it. And I just, it just kept going. And for 15 years, I was non compliant. And that's the other thing is that there's a lot of people that are doing that. So for you know, the handful or I mean, I don't know what the statistics are, we'd never really know, for the people that are, you know, running marathons and living well, diabetes, there's also this group of people that aren't living well with it. And I really, I want, I want the community to acknowledge that and embrace it, so we can help each other.
Scott Benner 7:00
Yeah, that makes sense. Okay, so let's dig into that for a minute. So you diagnosed 17 years old? You just getting ready to graduate from high school, or had you just graduated? It's in that time frame, right?
Nicole 7:10
Yeah, it was the it was the middle of my junior year of high school. Okay, and so
Scott Benner 7:13
and yeah, so let me help me to understand a little bit once you're diagnosed, was it 17 years ago? Was it something that just didn't? Like, how did your parents not get involved that it just not work out that they were involved? Did you say, oh, I'll take care of this. And they were like, right on or how did it? How did you know? How did the work division work itself out?
Nicole 7:32
You know, it seems kind of like a blur now, but I just I was I was an athlete. So I played water polo. And I was on the swim team in high school, and those seasons are back to back. So I remember having the symptoms like everybody has and everything, and my cousin is a type one diabetic. So as I was complaining about I'm like, I'm paying 20 times a day. And I started vocally, you know, being vocal to friends and then to my mom, and I think I came back came out and I said, Mom, look at these jeans. They're from like, eighth grade. So no, so my cousin hurt. My mom's brother's daughter had had been diagnosed with type one years before. And I think my mom kind of had a feeling. So she's like, you know, you might have diabetes, so we need to get you checked. So she knew something. And then sure enough, I went to a doctor, and I remember him saying, well, you have diabetes, but we don't know if it's type one or type two. And I looked at my mom, and I was like, get me out of here. Like, take me to someone who knows what the heck's going on, because this is ridiculous. And right away, I was diagnosed as type one. And I remember learning how to take injections. And that's it. I mean, I remember sitting in my room with a vial of insulin and a syringe and thinking like, Okay, I have diabetes. But they just, I think my parents, they may and I've, I love my mom, we are very close, and she's very much a part of my diabetes now. So and I know she's gonna want to hear this. I don't want to hurt her feelings. But I do think that both of my parents there, they were on their own denial. I think, I think, I think that people can only handle so much. And I just, and I was 17. You know, I, my mom's like, you know, we used to ask you about your blood sugar, you'd be kind of a brat like, I got it. And maybe I was saying that I don't really know. I just, I know that there was a disconnect between the support there really, I really wasn't getting any. I had a really, doctor that was not being helpful.
Scott Benner 9:34
I think it's fantastic that you said that because I first of all, I understand that you're you're not trying to crap on your mom. And and at the same time, you can't really tell the story. If you don't, you know, say honestly, like, Look, I was 17 it's an in between age. I'm not really an adult. I'm not really a child. You know, I wasn't really so open when people asked about it, and maybe it was easier for my parents to just say, Oh, it's gonna be okay. Everything's fine. And it like maybe that's how simply it started, you know, just in that kind of just, I don't know, it's just a it's just a simple human story. It's just, you know, it's not anything bad. Nobody was, you know, nobody was willfully marching around going, I'm not helping that kid with this and you weren't, you know, like it just
Unknown Speaker 10:18
yeah,
Scott Benner 10:19
I think it's important for people to know that you don't end up. You don't end up down that road all the time. Because you're just, you know, just willfully saying, I'm gonna go down this road, like sometimes. Right, right is what it is, you know.
Nicole 10:33
And I think that, because I was like, I got this, I'm fine. Everyone thought I was. So my friends. I mean, everybody thought I was no one knew what was going on. And what was happening was, my body was I was destroying my body. Like every piece of me.
Scott Benner 10:52
At what age do you think you You knew? Like, not from doctors or from tests or anything like that. But what age did you know? I should, this isn't okay. Like, I'm physically. There's an issue for here. Like when I don't mean like, when did something go wrong? Like when did you just start feeling so horrible that you were like, I know, this isn't right, I guess
Nicole 11:12
I think it was specifically two years after I was diagnosed, that I went to a, I was seeking out a diabetes support group, I think what I was looking for was, you know, people like me, and maybe even young people. And I did find a support group. It was more, you know, like I said, I was 19 at that time. So it was probably people in their 30s, which, you know, they they my blood sugar's were high. They were like 300 and 400 500. And the people in the group were like, What is wrong with you? They shamed me in a sense that the other diabetics were not nice to me.
Scott Benner 11:47
So most of the time, your blood sugar was high. When you went to a support group, all the support group did was say, Hey, what are you doing wrong?
Nicole 11:53
Yeah, they're like, What is wrong with you? Like, what are you thinking? Like what you know, and my doctor, when I was first diagnosed, he basically was like, your blood sugar needs to be 120 all the time. So I tried to get my blood sugar. This is before social media. So and this is and I and my cousin and I weren't close, she was a no state. So I didn't know anyone with diabetes. Like there was nothing I wasn't. You know? Yeah. So the doctor gave
Scott Benner 12:20
you an unreasonable expectation with no idea about how to reach it. 100%, right. Yeah, you did the best you could, it wasn't very good. And very understandable. You reach out to other people thinking maybe these people will help me and these people just use you, as a way to make themselves feel better. It you know, and that's, that's interesting, because we do that, as a group, a lot of it rears its head in a couple of different ways for you, I imagine you go into the support group, and there's a person in there who's can't get their blood sugar under 250, but sees your 300 and thinks while I'm doing better than her. And so if I if I can let all my kind of anger and rage and fear out on this girl, and I'll feel better, because my 250 is better than her 300 you don't mean like that kind of like, that horribleness that people can have in them. There's, you know, I don't want to out anybody but somebody just somebody just had a really horrible, like, issue in their life. And other people took the opportunity to go, Oh, you shouldn't have done that. You know, like, and this person's, this person didn't do anything on purpose. They weren't negligent. They ended up in a really bad way. And there were some people who took that moment to come in and try to make themselves feel better on their, you know, off of them. And it's just yeah, it's, it's, it's something because when you stop and really, like diagnose it and look at it, it's even understandable those people are struggling like mightily. And and they're probably on their way to tipping over like those people in your support group weren't there just for relaxation, they needed some support to write. And just the support they found was just going Ooh, that girl's worse off than I am. And so I'm not so bad. And that is horrible and understandable, literally in the same breath. And it sucks, you know?
Nicole 14:15
Yeah, I think I think at that point, I gave up. I was like, I'm done. This is a you know, I can't and I didn't understand that. There were highs and lows. I did not understand that. I knew I was terror. And that was the other piece. I was terrified of going low. That was a great fear of mine. But I didn't know. I mean, it sounds dumb now, but I didn't know that. That was okay. My doctor didn't like I said there was like this target and you're either in it or you're not. And it was it was awful. So I stopped seeing him. I stopped going to the doctor and I was going just to get insulin at one point. I wasn't talking about it. I was not trying to make friends with diabetics. I was not I just wasn't doing anything. I just was like, I Don't care, I'm done enough insulin to stay alive. Exactly. So in the beginning, so for the first two years, I did injections. And I think I think that time I was being as compliant as I could be. But once I went on the pump, which I also did not want the pump, because I did injections in my size. I didn't want anything in my stomach. I don't know why I just was I was freaked out. But I use like the top part of my butt for my site. And once I knew you could put a pump site there, I got the pump. I was on, not what I'm on now another pump for about 12 years, and I just ran the background insulin. I wasn't I wasn't bolson I would drink whatever I wanted. I'd have a soda or coffee from Starbucks. And you know, and I've had other diabetics even today, they're like, why would you do that? Or that was dumb. But there was there was a mental piece of this there was denial going on. There was shame, there was guilt there was not having the support, you know?
Scott Benner 16:06
Yet, okay, so you're reminding me of, Okay, I'm gonna record the on the pod ad. Don't feel good, guys. If you're listening to this in the first couple days of its release, probably not beyond February 23 2018. The Omni pod CEO Oh, Shea see who's been on the show a couple of times. She's coming on next week. If you have questions for you can go to either of my Facebook pages for Juicebox Podcast or for Arden's day and leave. There's there's a post already up. If you have questions for Shay, she can leave them there, and I'll do my best to get them answered. And as you can tell, my head is all swimming and I'm not making a lot of sense. So see where this goes. I also kind of can't breathe. Cheese's. This is a mess. Maybe I should run an ad I've already recorded Omni pod baby, we're gonna talk about the best insulin pump in the world. We're going to talk about it in simple simple terms today. You have a car, you ever need gas? You did right? You went to the gas station, maybe you got out you took the little hose you stuck in the side of the car, you squeeze the thing in the gas went in the car, maybe somebody pumped it for you. Maybe you live in New Jersey. Anyway, New Jersey pumps gas, they don't let you pump it. That's the point there. Nevertheless, can you imagine if you could only drive as far as that hose went? If you were always stuck to that gas pump? If you couldn't get away from it, no matter what. And if you did, if you said oh, I have to go a little farther than this hose will reach I'm gonna have to disconnect from this hose. You're going to drive away and run out of gas, then what? Is that? What you want to do? Do you want to be driving around stuck to a gas pump your whole life? You do not? That would be silly. It would actually be patently ridiculous. Now maybe there was a time in the past when that was all the technology would allow you to do is be attached to your gas pump while you were driving around. But that's not today. Today, technology exists. It's better. tubeless insulin pumps, for instance, are way better than tube insulin pumps, in my opinion, because you're not attached to something else. Why do I want to be attached to something just so I can get my insulin? Why do I want to have to unattach from it to take a shower or go swimming or playing a sport. I don't want to do that. You need your insulin, you need it all the time. You don't need it most of the time. You don't need it some of the time you need it constantly. I do not want you to feel attached. I want you to go to my omnipod.com Ford slash juice box and find out what freedom feels like. I absolutely love on the pot. And I think you will tell you're reminding me of when social media exploded out a little more Twitter became popular. There was a person with diabetes in the in the twittersphere. And she was I don't remember her name. I wouldn't say it if I did, but but she was definitely afraid of her insulin. Mm hmm. And so she would do exactly what you're saying like oh, I you know, I have my pump on. And my backgrounds running. But I can't bring myself to Bolus. And I watched countless well meaning people very supportively tried to help this person to just, hey, just look, you know, you know, think it through like this is probably going to take eight units. So just try four and see what happens. Right? And she couldn't do it. And and steadfastly couldn't she was having a real significant psychological impediment, you know, and eventually, one day she just disappeared. And I've always just sort of wondered about her. You know, I think and I think there are probably so many people like her that we're just not aware of she was just the one that had the nerve to speak up on Twitter. She was close enough to she knew she needed the help, but she could never take it and she could never even follow like she even knew you could see when she was talking. She knew what to do. But she couldn't write she couldn't bring herself to do whatever it was.
Nicole 19:59
Yeah I had Yeah, I had this fear that I was gonna die in my sleep, which every now and then that thought will come into my mind. But I'm not the same diabetic today as I was, you know, many years ago. So did you have a low
Scott Benner 20:15
that that scared you enough? Or did someone put the fear in you? How did you come up with that feeling?
Nicole 20:21
I you know, I don't know. I think I don't ever remember. My actual lowest low was probably a year ago, I was 35 off of an airplane. So I think that there was other that's like a whole nother that could be a whole episode, you know, flying well wearing an insulin pump. But I don't know, I just I didn't want to deal with it. And I didn't want to be low. I didn't the thought of passing out and someone finding me or having you know,
Scott Benner 20:50
it struck you so harshly that the other stuff didn't matter the feelings, right? sloshy thinking about what?
Unknown Speaker 20:56
All right. All that
Scott Benner 20:58
was like, well, that's not happening to me now. So
Nicole 21:00
this wins. Exactly. And I didn't think that I mean, I knew like I my doctors had not, they weren't like, I mean, they saw my blood work. They saw me anyone sees and they just,
Scott Benner 21:12
you were just the girl that they thought like, well, we can't help her. So everyone's not gonna try because i have i've,
Nicole 21:18
you know what, I never, I never had anybody, like, I wasn't like that girl. Like, I never had people. There was one or two. I had to get my gallbladder out years ago, it was an emergency surgery. Just like your appendix sometimes, you know, people have to get their gallbladder out. And so that so it was the surgeon. He was like, your UNC is really hot, because it was like 13 to 15%. Okay, it was off the charts like that is not normal, right? And he's like, you're gonna die? I'm like, No, I'm not. He's like, Yeah, he's like, he, he actually gave me five years to live. He's like this, you can't do this. And he actually called me. You know, and this was the surgeon. So he called me has always called me a couple times after that. And I did go back for my follow up. So he could, you know, look at the they use glue or whatever to fill me up to close me up. But yeah, I know, I just I wouldn't hear it.
Scott Benner 22:17
He saw your pre law, your pre surgery bloodwork saw your agency, and just said, Look, this is like crazy out of control. You're not gonna live like this and you didn't write you didn't believe him, or the amount is greater than his threat? Both. Okay, so I have a question. Maybe answer it, maybe you can. I always wonder about this. In other aspects of your life? Does your mind work like that? Do you get an electric bill? You know, you can't pay and not open it?
Unknown Speaker 22:49
That kind of thing?
Unknown Speaker 22:51
Maybe, okay.
Scott Benner 22:53
Because it's not a judgment. I'm just interested to know if, if you're, if you're, if you randomly getting Type One Diabetes is randomly more dangerous than someone else randomly getting type one diabetes, just for the fact of how your mind naturally works?
Nicole 23:10
That's really interesting. Yeah. It's definitely it's definitely a possibility. You know, I think when was funny that you brought up mail, because obviously, now that I'm deep into this, you know, I'm not, I'm not dealing with just, you know, money for insulin and pumps and see gems, I've got serious complications. And with that comes bills. And with that comes money. And, you know, I I'll be honest, I can't pay all the bills. I just can't
Scott Benner 23:42
know. Imagine how I mean, I can't imagine. Yeah, I guess but I imagine it's a lot. And so, see, because I I've said this here before, but I think it really begs saying in this episode, that I'm just, you know, when people hear how I am with with managing my daughter, you have to understand the randomness. That is who I am, right? Like it's, I'm a person who was put up for adoption, right when I was a brand new baby, and and I'm adopted by people who are very lovely, but they're blue collar. And I'm clearly unlike my mom will never hear this, but I'm clearly smarter than the people who raised me. And it wasn't it's not a judgment or anything like that. They're just brains worked one way, they were sort of simple people. I don't mean that they were not as smart as me because they were blue collar. I mean that I know plenty of very smart blue collar people. I just mean that something would come up and I would see this common sense approach to it. And I would watch them struggle to come up with any answer that was anywhere near mine. And even as a person in their early teens, my mom was coming to me and asking me about life things going like what would you do here? And it was a weird thing. And then right and then my dad left my mom. So now I've been basically abandoned once at adoption. I've been now abandoned again by the you know, the man who adopted me and My mom was broke. And then what to do next sort of fell to me at 13 1415 years old, I raised my brothers when I was a teenager while my mom went back to work, all these things that happened to me in my life, I kept responding to, but I don't take credit for that. I'm not telling you that I got thrown into the situation, and I stood up, it is just for whatever reason who I am. And so when this diabetes thing happened, I just attacked it in the same way. If I heard somebody saying something, it didn't make as much sense as what i thought i disregarded them and went with what I thought, I have a don't give up attitude, I you know, but this is not something I built or created or willfully did. And I, I really, genuinely believe that what happened to you isn't something that you built, created or willfully did, either. I just think it's who we are. And some people situations, lend to their strengths, and some people situations lend to their weaknesses. And that's beyond your control. You know,
Nicole 26:03
yeah, you know, I did a post recently where, you know, I taught, I see, I never, I don't want to blame anyone, right? Because again, I'm not in that space that I was like, I'm not, I am not non compliant anymore. So I don't want to like blame my mom or blame the doctors or blaming anyone. But for me, it has been important to look back and see what did go wrong. And one thing I can say is that, no matter how old someone is, when they get diagnosed, I don't care if you're two, or you're 10, or you're 21, or you're 50, there needs to be that support. And there needs to be like, I call it a diabetes team, right of people. And I think that how a parents how their attitude is towards their children and their diagnosis and the support they're given, will can set them up for success or failure. If that makes any sense. It does.
Scott Benner 27:02
And everybody needs some level of support. Some people might need more, some people might need less, some people might need more nuts and bolts support. Some people might need more emotional support, but there's a need for everybody who's diagnosed. And right and, and so that structure has to be in place. So you can take from it what you what you require, right so that you can be successful, because there is no doubt that in, in the right, in the right framework, you would have probably been more successful early on the new bar. It's just right randomness, you know, the randomness of your life just did not support you in any of the ways you needed.
Nicole 27:38
Right. And I don't I mean, and I'm thinking now, oh, gosh, everyone's gonna be listening to this. And you're gonna think like, Oh, well, this is a personality thing. This is just no, no, no, who she who she is, and I, you know, I have a lot of other autoimmune diseases where I think like I have celiac disease, I'm not sure if you're familiar. And basically, I can't have wheat, rye malt barley or oats. And that that diagnosis came in my 20s. So I've had that for 10 or 11 years. And I've always been compliant. And the difference between celiac and type one for me was with diabetes, I could be high and there was no consequence in that moment, right. But with celiac disease, it's like, Okay, if I eat something I'm not supposed to, I'm gonna have diarrhea, and not just once, but for the whole day. And then I'm gonna feel like I have the flu. So it was very, like, I'm not going to do that, because that doesn't feel good.
Scott Benner 28:35
No, that listen, that makes a bunch of sense. And I want you to know that I don't going back for a second. Like I didn't, I don't mean that it's a personality issue. Like you're a person who doesn't care. I just mean that. I just mean that there's sometimes it's just who you are like, I don't there's certain colors I don't like if you if you force that color on me every day, I wouldn't begin to like it. I just picked on that there's that thing, like my brain would always respond to that color the same way. Right? You know what I mean? Like if you there's stuff Look, there are things as much as I might be a go getter about some stuff. There's some stuff that that my wife will point out to you that if I don't like the thing that's going on, I ignore it. You know, like, I have to do something but it's not something I'll enjoy doing. So I ignore it. Right? I'm completely aware of that about myself. It has never made me change once But to your point it never also gave me diarrhea or retinopathy. So but but but it just but if I could have easily fallen into and I still could I could get you know, wouldn't it be ironic if I got type two diabetes and ended up being the worst type two diabetic in the world, like you just you don't know what, what it is that you're going to respond to not respond to. And it is difficult to force yourself past something, you know, especially when it's hardwired so you know you you don't you don't, you don't look at a person who's depressed and tell them what you're just not trying hard enough not to be depressed. And and the idea of depression or having built in responses to things I don't think is any different. I just think it's who you are. It's how you're wired. So right. So tell me a little bit about these high blood sugars and what they brought. What was your first complication that
Unknown Speaker 30:17
came up?
Scott Benner 30:18
I'm incredibly excited today to tell you about Dexcom. Dexcom is a continuous glucose monitor. Those are a lot of big words. I don't know if you know what that means or not. I'm going to tell you, do you know what your blood sugar is? Right now? Do you have type one diabetes, you know what your blood sugar is right now? Do you have a child with Type One Diabetes? Who's in the next room are at school? Do you know what their blood sugar is? Right now? I know what my daughter's buzz sugar is. It's 115. And it's nice and steady. It's been steady for the last three hours and kind of moving just gently between 90 and 115. How do I know that looking at an app on my iPhone. Now, if I had an Android phone, I could also look at an app there too. So I'm looking at my daughter's blood sugar from across town while she's at school. That's called the dexcom share. A continuous glucose monitor is exactly what it sounds like. It is a continuous, which means all the time ability to look at what your blood sugar is or what your loved ones blood sugar is being able to see a blood sugar when it's moving, and react to it. Being able to react like that. That's the key to keeping your blood sugar where you want it. That's why her blood sugar is at 115 right now it's why Arden's a one season between five, six and six, two for almost four years. Because we get a small announcement from the from the next time Hey, your blood sugar's on the way up, and we're able to just bump it back down again. There's no waiting until three hours to test to find out your blood sugar's 200 points higher than you think it is. And then you're fighting with it all the time. The bumping and nudging that you hear me talking about on the podcast is possible. With the dexcom share and follow ups. It's it's absolutely spectacular. I really do want you to go to dexcom.com forward slash juice box to find out more about the Dexcom. You have to don't confuse it with any other continuous glucose monitor in the world. Dexcom is the absolute best dexcom.com forward slash juice box. As soon as this episode is over, type that address into your browser or click the link in your show notes. You will absolutely be happy that you did. Please remember these results are mine and yours may vary. What was your first complication that came up?
Nicole 32:33
After having diabetes for about 15 years. I remember telling my mom just in passing because in 2009 I got I had a prescription for glasses, but it was it was like minimal, just made things a little bit more crisp. And I had noticed I mean, I wasn't really having any symptoms. I just I wanted contacts. I wanted to be able to wear my glasses. You know, I wasn't I don't like glasses on me personally. So I wasn't wearing um, I wanted to wear something at night I said, you know, I'm going to go get contacts. My mom's like, Okay, so my doctor, my eye doctor had just retired. And for those wondering, I was going to the eye doctor, I did go once a year. I can't explain why I was not compliant in some areas and others because i guess i in the back of my mind, I wanted to make sure that I was okay knowing my blood sugar's were so high. So my doctor had retired and I went and there was a new woman who had a heavy accent that I did not know. And she looked at my eyes for like a second and stood back. And she had this reaction. And she's like, they're they're, they're bleeding. And I'm like, Yeah, I mean, I could barely understand what she was saying. And I was like, what's bleeding? And she said, you have diabetes and your eye and your eyes. I was like, okay, and I still I mean even she was acting really weird, especially for a doctor like it was very dramatic. And I was like, okay, and she wrote down the name of someone and said, You need a retina specialist. So I told my mom and dad what had happened and they were like, you're not going to get my dad actually has a genetic disease called RP, which is not diabetes related, but it has to do with the eyes and it can make you go blind. So he already had a retina specialist. He's like, I've already seen that doctor that they want you to see the doctor is a jerk. He said you're gonna go to UCLA and see my doctor. You know, I wasn't even an even as an adult. Like he was telling me you're gonna do this,
Scott Benner 34:39
because you were the next step button how
Unknown Speaker 34:41
important right?
Scott Benner 34:45
You have diabetes in your eyes is a ridiculous sentence.
Unknown Speaker 34:49
Yeah.
Scott Benner 34:50
It's staggering that that someone would have such an unfeeling
Nicole 34:56
Yeah, well and and and with that with that comment, some people Some people would just not go to the eye doctor, they would be so scared, because people don't always want to know what's wrong with them. For me, it's like, if you tell me what's wrong, then I'm going to go and research it. Like, I need to know exactly what's going to happen. And then that helps ease my anxiety. If I don't know what's going on, then I freak out. So I want to know, and, and I've told all my doctors, please, like, Don't Don't sugarcoat anything, just let me know what's going on. So I can mentally prepare and deal with it. So my mom went with me to UCLA probably a month later, and basically the doctor that you know, UCLA uses fellows, which are doctors that are practicing. So they scanned me did all these tests and everything. They brought me behind the the actual room where they look at you. And I remember I was looking straight at the doctor. My mom was behind me, the two fellows were to the side of me. And he said, Well, you know, it's not good. I said, Okay. And he said, You have diabetic retinopathy, and it's proliferative retinopathy. So basically, they diagnosed me with end stage, retinopathy. And proliferative retinopathy is the type that will can make you go blind. I that was that was only like, that was in 2015. So I'm 34. I'm almost 35 now. So it's just a few years ago. It was what, two and a half, three years ago? Yeah, it just, it's
Scott Benner 36:30
interesting for people to understand that you began at 17 years old, and put in put in, you know, that many years of, you know, just not really taking great care, and that it still took that long for something to happen, because because when you're doing that, I mean, you've said it, and I think people can imagine it, you're betting you're like, Okay, well, maybe it won't happen to me, and write the message really does need to be, it is going to happen, but you know, like, it's not like you're gonna just, you're not gonna let your blood sugar be 300 forever, and nothing's ever going to come with it.
Nicole 37:04
Right, exactly. And that's why I tell people all the time, it's not a matter of if it's a matter of win like that, that this is not, I'm not like some I'm not a ninja turtle. You know what I mean? I'm not the only diabetic in the world doing this or that this has happened to Yeah. So basically, after, you know, he's telling me all this stuff. And then all of a sudden, he says, you know, and this can be hard for the whole family. And in my mind, I was kind of like, why is he saying that? And I remember in slow motion turning around, and my mom was crying. And my mom doesn't cry. So then I knew it even more than it was serious. And I said, Well, what can you do? Can you fix it? And he said, there are things we can do. And I said, like, what? And he said, Well, we can do lasers, lasers and injections. And I said to my eye, and he said, Yeah, I was like, Okay, well, I'll be asleep, right? And he said, No, you will be awake. So I felt my knees start to buckle. And freaked out. I remember going home and crying in the bathtub and thinking I'm gonna go blind. And so he's been working on me since 2015. At first I went like every two weeks, you know, working on one eye than the next and the next, the next. Now I go every six weeks. And, you know, I tell people, I've had over 20,000 laser burns per eye. I've had probably 48 injections in total. So 20, something to eat. I and I've had one surgery, I had a vitrectomy of the left, I had a major hemorrhage, and I have lost central vision in my left eye. So yeah, it's it's, you know, that's why I talk about it. Because even though it's not pretty, it's like, I don't want this to happen to anybody else.
Scott Benner 38:55
Yeah, it shouldn't be the understanding of this stuff shouldn't be in the abstract that we shouldn't, it shouldn't be in most people's minds. Oh, if my blood sugar's too high for too many years, something bad's gonna happen. Because it's just too in specific. You really knew if you're going to, if you're going to make a bet with your health, you ought to really know what you're betting. You know what I mean? Like, you won't just be random, like, Oh, I you know, maybe I just my fingers won't have as much feeling like, you know, you whatever you end up lying to yourself and thinking is gonna end up happening to you. It was the eyes, like, how long would you say you've been paying? You know, what you would consider to be closer attention to your blood sugar and trying harder to keep it in in that 120 range that the doctor told you about so many years ago?
Nicole 39:39
Right? Well, since when he when I got that diagnosis. I was terrified. And remember, a lot of my stuff is fear, fear based and it's something that I work on even today. I don't I don't want to live in fear. But I was terrified of going blind and specifically being a blind diabetic. I could not comprehend how is that going to work because nobody Like no one I'm I don't have a husband or a boyfriend or best friend or anybody that knows how to give me insulin like no one knows how, how my body works besides for me. So in my mind, I have to 100% all the time be in charge and taking care of this. I just it's like if I don't if I can't see my beater, and I can't take it, you know, there was all these like, what if and it was just playing like a movie? I'm like, Oh, hell no. And I it woke me up. And you know, I think I don't I think it was either right before right when that was happening. I got Dexcom. So those were the two things that happen was one I was not going to be a blind diabetic. In my mind. I was like, No, and two, I got Dexcom and Dexcom saved my life. Oh, I could see my blood sugar's I could see what the food was doing. You know, I also have some form of gastroparesis. So that makes bolusing difficult for me, but it changed my life. I could see, it's almost like when you don't have a CGM when you don't have Dexcom you're blind in a sense. And that I that? Yeah. So So now my agency, like I said, when I was in 1314 15%, and I don't talk about agency for kind of the reason we talked about earlier, is that people compare themselves. But it is important for my story to know that my agency now is the last one I had about a month and a half ago with 6.9%. It's the lowest day one see I've had in almost 18 years to see graduations.
Unknown Speaker 41:36
That's amazing. Yeah, a lot of Yeah. A lot of Yeah, I mean, a lot of fear, I
Unknown Speaker 41:39
would imagine.
Nicole 41:40
Yeah. And it's it's a lot of self control. Because I don't just, you know, I had someone tell me, oh, well, don't be afraid of the food. Just, you know, just just keep trying. It's like when you're newly diagnosed, you have time to have some high blood sugars here and there. And to play with the food. When you have complications. Every single high blood sugar I have, it's like, Oh, is that gonna pop up? Like is Yeah, do I have new vessels bleeding in my eyes now? Like, did my kidney just take another shot? Like, I don't? I don't, I don't want to try. You know, it's like, I eat specific things. And it's, it's very controlled. And I really don't go out have I had a dietician say, Well, yeah, I had a dietician. Tell me recently if you stay in your box, and she made like a box, like an imaginary box with her fingers. Yeah, well, no, I was insulted. She basically it was just like, I don't know what she said. I probably wasn't she started making the box tape. I was just like, whatever. You know, like, this is what works for me. I you're not me, I don't really care. I'm trying to live before I wasn't really trying to live now. I want to live like I want to do things. And my health is it's compromised. Like, we're This is. It's not good. And I don't like to think of myself as like the sick person, but I'm struggling. You know, I'm physically struggling at this point.
Scott Benner 43:05
I'm assuming you're limited by the gastro priestess as well. Right. So is that is that so for people who don't completely get the idea of like so is your stomach doesn't empty the way that it's expected to see you can't timing the insolence much more difficult. Is that right?
Nicole 43:23
Right. So basically, it's kind of it's like neuropathy, you know, nerve it's nerve damage in the stomach and I've got I'm, I'm riddled with neuropathy. I've got it my feet, my you know, legs and everything, my stomach. So basically, the food will just I'll eat it, and it'll just sit there. Yeah. So
Scott Benner 43:42
now leave it alone the way it's supposed to digesting it. So it's not sending carbs into your system.
Nicole 43:49
Right away. So, right. So now we have a whole new problem. And diabetics also don't understand this. Like I cannot Bolus 15 minutes ahead of time. Or right when I start eating I Bolus when Dexcom. When the arrow I call it a slight arrow when it starts to slightly go up, I Bolus right away. This is a timing thing like this is the timing is crucial because if I do not Bolus, you know if I don't catch it in time, and now I know there's certain foods that are more difficult than others or like I know blueberries, I can eat blueberries and Bolus five minutes in and be okay. There's some foods where it's like once that high once you have a straight up arrow, you know, and then you're waiting 15 minutes for the insulin to kick in. It's just it's a nightmare.
Scott Benner 44:35
So I think I think the message here is is that figure this stuff out now before you have problems because if you really stop and just listen for a second what Nicole just said. She said that I've had a blood vessel burst in my eye already needed surgery. I'm afraid if my blood sugar goes up again, it's going to happen again. But I can't tie my insulin properly because the neuropathy in my stomach keeps the food from breaking down in a way that Can Pre-Bolus she isn't you are in literally, like a four pronged hell, like really, and this is something you have to think of every time you eat, you know,
Nicole 45:11
right well, and there's and there's times where like all you say, I do not eat pasta, like okay, pizza, maybe I'll eat pizza two or three times a month as a treat, knowing knowing it is a food that I'm gonna hit 200 and I'll be lucky if I don't go higher than that. So it's not really worth it. But every now and then I crave it and I want it, I want it. You know, I try not to be too extreme. there's times where like, I won't have a rise in my blood sugar for two and a half hours. And then it's like, Okay, well, how much insulin Do I need now? Because it's been two hours.
Scott Benner 45:46
Well, and here's the question is, is, is it two hours? Because my body's just now starting to break down this food? Or is it two hours? Because maybe I was going to get low without some of that food and you have no way of knowing it's just yeah, so when your blood sugar starts to creep up, is it a bolus for all the food? Is it a bolus for some of it? Is it Yeah, no, I know and and and everything you're going through is just magnified so much by consequence the like because your consequences are now in the moment they're real they exist today they're not they're not something that may happen in the future anymore. They are happened to the future is now like it right and it's happening right now is there Okay, hold on. Let's take a breath, gastroparesis, their apathy, I issues. celiac, anything else?
Nicole 46:34
I mean, I will in regards to the diabetes, I also have kidney disease, unfortunately, right after I got my I and I and kid because I disease and kidney disease can come hand in hand and type one diabetics. So basically, you know, I'm assuming, see, I'm not one of those people, I don't always get my bloodwork and analyze it. I trust my doctor, my doctor is a type one diabetic, his daughter's a type one like, so. He tells me things and I listen, and I take that but he you know, actually, okay, let's back up. I had gone to my annual gynecologist appointment, who my gynecologist I also love and he said, you know, You're spilling protein in your urine. I said, Yeah, my diabetes doctor, he mentioned that and he's like, well, you need to like, go talk to him about it again. And I was like, okay, and again, I I'm not thinking that it's anything big. I already know about it. So I tell my diabetes Doctor, what my gynecologist says, and he said, Yeah, you know, you have beginning stages of kidney disease, but it's pretty normal. I mean, most diabetics when you've had diabetes, 20 3040 5060 years, although I've heard some say I have no complications, which I don't know how that's possible. He's like, it will happen, you'll have a little bit of kidney damage, and it's not a big deal. It's, it's in five stages. So stage one being maybe beginning stages into stage five. And I said, Okay, so it's stage one. And he said, Yeah, I said, but Are you positive? And I started questioning it because I'm already going through the AI stuff. And I said, No, I told him I said, That's not good enough. I want to know where it's at. Like I want to know exactly how much kidney function I have. And I put I had to push him had I not pushed him I don't think I would have found out obviously so soon, but when the test came back, it's a it's called a 24 hour creatinine clearance where you pay into a jug for for 24 hours you collect the urine, you give it to them they analyze it, they came back that I only had 50% function
Unknown Speaker 48:42
which is stage two stage three and he was telling you don't worry about it this is early on
Nicole 48:46
basically he told me what stage one so I mean I still see him he's still my diabetes doctor you know i But yeah, I I pushed for that. And you know, at that point he said I need to refer you to a nephrologist.
Scott Benner 49:03
And give me wish I never marked this podcast as Clean Language because I want to curse but but I can't. So I we don't really know each other except for messaging back and forth to set this up. And as you're talking I'm like rubbing my face down to my skull thinking like this poor person like all this stuff and and she's and now she's trying to get a hold of it cuz you said something really amazing. Somebody said your your Hey, there's protein in your in your urine. And you said I want to go find out what this means. Like you've done a complete 180 degree turn from where you started like the person you were back. Yeah. would have been like, I don't hear what you're saying. And gone home and not thought about it ever again. You might have worried about it been scared of it, but you never would have looked into it. And now now you had I do you think and if you don't have an answer to this, don't force yourself to have an answer. But But back then in the middle of everything that was going on, is there something that you wish could have happened before? before? What happened to your eyes that could have like desert anything you can imagine that could have pushed you forward? prior to it being health issues? Like Like, what would you tell somebody? Like if you could go back in time? What do you think you'd say to yourself?
Nicole 50:26
Yeah, no, no, I don't think No, I don't think so at all, you know, I would tell my self it's not that it's not worth it that that diabetes is so much easier on its own then all these problems that I now have. I mean, I can't have children now. I'm looking at needing a double transplant, you know, so and it makes me get a little choked up because I know that I caused this and so I have to deal you know, with the guilt and the shame but yeah, I it's not worth it. It's it's so much easier to just you know, you know, just take it just take care of it. Just check your blood sugar's that's what I tell people on social media check your blood sugar's like please check your blood sugar's I just posted
Scott Benner 51:17
an episode The other day, which now I realize I'm just running yours next week. Usually, they don't go out as soon as I record them. Because these are the sort of back to back messages I posted one last week with a girl who used to be the catcher for the Alabama softball team. I said in that episode, there is going to be a fight with diabetes. At some point, you can have the fight now, or you can have the fight later. But I would, I would much rather fight now before things go wrong. But while I've still got a chance of winning something like I don't want to fight for my life, I want to fight to keep my life. Right like and and I think that's what you're saying is that this is going to either you're going to deal with your fear now and your anxiety and your and your inability to deal to make good decisions because nobody's giving you tools, all the BS that comes with being diagnosed. You either deal with it now and figure it out, or deal with it later when you're like saying things like that man put 48 needles in my eyes. Like I don't even have the nerve to ask you what that feels like.
Unknown Speaker 52:19
It hurts.
Scott Benner 52:23
And so like, if you're going to get into a fight, eventually you might as well get into the fight that leads you to the best possible outcome.
Nicole 52:29
Yeah, absolutely. Just just deal with it. However, you have to, you know, I I have hatred for my disease. I don't have hate. I don't carry that today. Like I'm, I'm different. But yeah, I hated it. I hated it. And I thought I was invincible. And if somehow
Scott Benner 52:50
you would have met it head on back, then you have to also live with the idea that this probably wouldn't be your life at this point. And and right, but I do want to say something to you. And I don't know how much this will mean coming from a stranger. But you said that it was your fault. But I would really maintain that it's not your fault. It's diabetes fault, which again, is no one's fault, like, like, do you know what I mean? Like, I don't know, I don't want to make it sound super simple. But they say that a few times a year a giant block of frozen urine files out of an airplane and hits the ground never hits. But if but if Nicole, if you got up this morning and said, Oh, my alarm went off at seven and you hit snooze six times, and got up 25 minutes later than you were supposed to walk outside to go to work in a big block of floors and urine fell on your head. I guess you could make the point. It's my fault for pushing the snooze button. But it's not your fault. Like Jamie like there is some randomness to the world that's beyond all of our controls. You getting diabetes is one of those things your mom meets a guy and they're having a baby and their genetics together makes a baby who's more susceptible to diabetes than other babies and you end up with it. Had your mom said yes to the guy that asked her out three weeks before your dad did you know blah, blah, blah. You know what I mean? Like, keep going back in that line. countless people have made countless decisions that led to you being here. None of those you you don't mean like like, right, I get what you're saying that when it happened. You could have done something different. I don't think you're wrong about that. I do think you're wrong to assign fault to it, though. Right? And I hope you don't I mean, I don't know I don't think I can talk you out of it in 20 seconds. But I don't I mean, if the if you can do something for yourself. I would I would say forgive yourself for what you think you did, because I don't think you did anything first of all. Plus, I think it'll just make the rest of your life that much more pleasant, which it's a life now that you're fighting for. So it might as well be one that you're happy with. Right?
Nicole 54:53
Yeah, no, and I and I, I respect what you you know, your opinion and
Scott Benner 54:59
full of crap, and not the I'm talking about. But
Nicole 55:02
no, it's funny because my my friend who also has really bad gastro precice. And she also has retinopathy. I was with her last night with her boyfriend, and he said the exact same thing. So when somebody doesn't matter if you're a stranger or not, when I hear someone, whoever multiple people tell me the same thing, then I do absorb that and think about it. Yeah. You know, I guess. Yeah. And
Scott Benner 55:29
you can be academic about when you're thinking about other people's lives, it's still hard to apply to yourself. Yeah, you know,
Nicole 55:35
yeah, I just. And sometimes I think that this is, in a positive way, my purpose, because I know I have friends that have, you know, certain diabetes complications, and they're not out there talking about it.
Scott Benner 55:50
I've seen you on your Instagram, like, with friends who are in the hospital, or just trying to get people to, you know, meet things head on, and things like that. And it is a really wonderful thing. And you're doing this today. Look, I, you're going to end up being Episode 151 of this podcast, and there have been some incredibly honest people on this podcast, you're probably going to take the crown on honesty, you know, yeah, I was so cool. Because
Unknown Speaker 56:17
I think that's kind of cool. Well, it's
Scott Benner 56:18
amazing, because because nobody really wants to say out loud, look what I did, and look how bad it is, especially knowing like what we talked about in the beginning, that there are some people out there who are going to hear your words, and they're going to use your struggle to make them feel better about the things they're not doing their life. And, you know, God knows, some of them might come after you in public and let you know that they're doing better than you are that you screwed up or whatever makes them feel better to say, you know,
Nicole 56:45
well, you know, what I not to interrupt, but to interrupt, I get emails all the time. I get emails from my head, the email, or like, direct message on Instagram from, you know, someone that was pregnant, and she's like, my, I went black and I can't see and, you know, people that are on dialysis. I mean, I it's mostly actually I patients, or is this normal, and I have to tell people, you know, this is my experience, but go to the doctor, because you need to go to the doctor, right? Like, I can't diagnose you, and I can support you. And I can say, yeah, that happened to me. But at the end of the day, the eye, it's different for all of us. And it's very, very delicate organ. And, you know, I might like I said, My I've got a very close friend who, you know, has same diagnosis, and she's, she's, she's, she's pretty much blind in one eye. She's had had to have multiple surgeries. And, you know, and why, why why did that happen to her and not me? Why did we both have a retract to me? And, you know, although I have, you know, vision loss in that I like, it's hers were far worse than yours. And why
Scott Benner 57:59
you? And that's Yeah, that is survivor's guilt to some degree, I would imagine. Right.
Nicole 58:04
Well, well, you know, it's funny, because, yeah, it's funny, because when my doctors you know, they've been talking about, you know, having a double transplant, you know, kidney and pancreas. Sometimes I think I will feel guilty, because I like to stay on social media and support people and I, if that goes down, and who knows. I mean, I'm getting closer to, to some of that, but I don't know, I don't want people to be pissed at me or, or, or some. You know, what someone said once they're like, Oh, I wish I could have that. It's like, No, you don't, you don't want to wreck your body so bad that you need a kidney. And, I mean, there's so much that they don't know about pancreas transplants anyways, so it's all roses.
Scott Benner 58:47
It's no, like switch fish, you're gonna be on blockers for rejection the rest of your life, which Yeah, with your luck, that hole is going to lender lead dancer. And so you know, like,
Nicole 58:57
yeah, don't put that in my or, like, don't put that in my field.
Scott Benner 59:01
But But you know, but first of all, no one should be hoping that they're paid that their kidneys go so they can get a transplant. Because that is a hard you don't know, I know somebody's going through dialysis for a long time. And it's a personal friend of mine. And it's it's a heart. So
Nicole 59:19
yeah, that Yeah, that's a whole nother you know, yeah, yeah.
Scott Benner 59:22
But so, so point here is, of course, you can't give people medical advice, and of course, but but you can always give them the benefit of your knowledge. Your knowledge isn't going to if you got an organ transplant tomorrow, your knowledge about gastroparesis about retinopathy about being non compliant, that that knowledge doesn't change, it probably grows. It probably gives you a different perspective. You don't have to stop trying to lend help to people because your situation changes. You're such a grow you'll have more to help with right now and as far as people being angry that you got them and not you that's a strange idea. idea, you know, like, Nicole, I absolutely lovely, but you are almost health wise, not someone anyone should feel like I wish I was her. You know, like, it's just, that's just, that's probably someone's just, they're probably just in a dire situation, and they just don't know what else to do or what else to say. But I think you know what they should be doing. They should be confronting their fear, trying to find support, getting answers that will help them take better care of themselves day to day. And, you know, I just I'm, you know, we're so close to an hour, I'm totally having you back on at some point. Because first of all, you're chatty and thoughtful, which keeps me from having to talk too much, which the listeners will appreciate. And, and at the same time, I think there's way more to your story coming and still, that I would love this still. I mean, I would love to do this with you again, if you don't mind.
Nicole 1:00:52
Yeah, no, I would totally I would totally love to. And, and like I said, I'm, I'm, I'm totally open for anyone that has complications or questions. And, you know, I, I do make it a point to try to answer everybody at this point, right?
Scott Benner 1:01:10
An angel on Instagram, that's for sure. How do people find you on Instagram?
Nicole 1:01:14
So, my, I don't know, I call it a handle right? My name or whatever, it's nicknack 143143. So it's ni c n ac 143143, which I was just telling somebody, I do want to change it. So I don't know if there's a way for you to put on the podcast just in case it does change. If you ever changing you tell
Scott Benner 1:01:36
me and I'll because I'm gonna put a link in the show notes. It takes them right to your page. And if you ever change it, I've done it for other people. I'll go back and change it for you. Okay, so let me know. Um, but Geez, I so if you're having Listen, here's, here's the thing, if you don't, if anybody who listens to this podcast doesn't see that what Nicole's talking about is the end result of all the things that we talked about every week on the podcast, trying to avoid if you're not putting those two and two together, please pay closer attention. But, you know, because Nicole, we talked about how to stay away from spikes, how to eat food, without, you know, without creating these high blood sugars and lows later and stuff like that, really understanding how insulin works. It is super important to figure that stuff out now, not later. All right. And and I just wanted, I normally when I re edit, I'll edit this later. And at the end, I thank the person, you know, just kind of, they're not there anymore. But I just I'm gonna Thank you Now like, I just really appreciate you coming on and speaking so openly about this.
Nicole 1:02:36
I will thank you. Thank you for having me. And if I can just say one last thing is that I don't want to scare people, right? Like I don't, I want I want people to have a small healthy amount of fear. But I just tell people, like just do your best, right? Do your best. I get so many people want to know, what's the test for your kidneys? And this? It's like, I don't like, of course, you can email me that and ask me that if you want. But ideally, it's like what what should I do to not end up like you not what test? Do I need to get done right now? Right? Because the people are asking that it means that they've they've they think in their own mind. They've surpassed doing anything now that they're at a point where they may be having the same complication?
Scott Benner 1:03:19
Yeah. Like you said, like they need a healthy amount of fear. I don't even think it's I think that the one thing we don't need around diabetes is fear. I think that people need a healthy amount of respect for what this thing can do. This is no different than holding a loaded gun, driving a car, playing with fire. These are things that could devastate if you misuse them, right. And I think diabetes is just very similar like that, like you. I think the problem is that is the fear like the doctors make you afraid right up front or you get you get the fear because no one gives you information and you're left to wonder or Google or your anxiety takes over. I think that if people have heard me say enough on here, the step that I took first, to getting my daughter situation to where it was and like you said, I don't think it sucks the Sherry one sees because it can make people feel bad. But I do like you I share Ardennes because it shows that like a guy like me who didn't know what he was doing and was struggling as much as anybody could understand diabetes, figured it out and got you know, my daughter is a one sees been between five, six and six two for over four years. And wow, the first step to that was getting rid of my fear. And and that was the I had to figure out a way to do it was so meaningful to me that when I figured out that that was the lesson, anybody who paid me to blog years ago, or even on my own site where I wasn't being paid, all I wrote about was was fear and that it you needed to get rid of it. Because Because that's the first step to making because the rest of these decisions are difficult. And when you're afraid you can't make them be you know, it's just it sucks. It really is.
Nicole 1:05:00
That's right. And that's why I think I said, you said it better than I did. That's why I said healthy. Meaning like, you can't, I can't walk around and say, Oh my God, my blood sugar's 200. And now this is gonna happen. It's like, okay, I did my best. I'm gonna bring it down. You know what I mean? But But yeah, I like how you said,
Scott Benner 1:05:16
I wasn't correcting you. I was just saying that, like, I just in general, like, I knew what you meant. I just, it would be weird. If after 150 episodes and be telling people not to be afraid, I let you say, you need a little bit of fear. And I was just like, right on.
Unknown Speaker 1:05:30
Right? No.
Scott Benner 1:05:34
But But seriously, I'm gonna Let's stop the recording. And I'm just need to say thank you privately. But this was really terrific. You should be applauded for being this open. So thank you very much. I'm incredibly grateful that you did this.
Nicole 1:05:48
Well, thank you for having me. I appreciate it a lot. Absolutely.
Scott Benner 1:05:52
Let me thank Omnipod and Dexcom for sponsoring this episode. And thank them for putting up with me inserting old ads, but I'm having trouble talking today. Please go to my Omni pod.com Ford slash juice box dexcom.com forward slash juice box or the links in your show notes to find out more. Okay, I'm going to try to get through this. After we recorded this episode, I got a note from Nicole that said, You know, I was just thinking and I'm not sure how important it is or if it needs to be mentioned. We didn't dive too much into the kidney disease. But if there was something important for people to know, it's that I didn't stop at 50% function. It has progressed so quickly. It's now at stage four. I say this because you can live well and okay with 50% function. But now I'm facing dialysis and my function is like at 21%. So whether it's the podcast or another time, I think the quickness of the progression is important to share. Two days later, she posted this on her answer page. I wish I had better news. I even wish I had something profound to say. My doctor called and left me a message with the essays labs. He said it's time to call the transplant team. Quote tell them you have chronic kidney disease and you're a patient of mine. Tell them you need a transplant evaluation. Nicole goes on to say so basically they will evaluate me and then they will put me on the deceased donor list. my kidneys are giving up. Honestly, I just cried and cried. I called transplant and left a message and then just stared out the window. Not even thinking feeling like I couldn't really move my legs. Just sitting staring wondering how strong I am wondering if kidney pancreas transplant is safe or a good idea. thinking I'm not ready and I don't want this. Time's up. My body says I feel like I'm trapped in a nightmare. I want to go back in time for a do over too late. Time to keep moving forward. If you want to keep up in the call story, or even thank her for being so bold today on the Juicebox Podcast. She's nicknack 143143 on Instagram. That's Nic NAC 143143. There's also a link in the show
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