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Podcast Episodes

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

Filtering by Category: Interview

#1358 Blue Circle

Scott Benner

Wait until you hear about Bluecirclehealth.org 

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon MusicGoogle Play/Android - iHeart Radio -  Radio PublicAmazon Alexa or wherever they get audio.

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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
Welcome back, friends. You are listening to the Juicebox podcast.

If you are living with type one diabetes, blue circle health can provide you with support services and resources you need to help manage this difficult disease, and this is at zero cost to you. You might be thinking, wow, Scott's putting the ads up closer to the front of the episode now, but that's not true. That's not an ad that's about today's episode. Today, we're going to be speaking with Sarah from blue circle health, and wait till she explains to you what the organization does and what it will cost you. Nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D drink, ag one.com/juice box. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout. That's Juicebox at checkout to save 40% at cozy earth.com

Today's episode of The Juicebox podcast is sponsored by the ever since 365 the one year where CGM that's one insertion a year. That's it. And here's a little bonus for you. How about there's no limit on how many friends and family you can share your data with with the ever since now, app no limits, ever since, this episode of The Juicebox podcast is sponsored by the contour next gen blood glucose meter. Learn more and get started today at contour, next.com/juicebox Did you know if just one person in your family has type one diabetes, you're up to 15 times more likely to get it too. So screen it like you mean it one blood test can spot type one diabetes early. Tap now talk to a doctor or visit screened for type one.com for more info.

Sara Lerner 2:24
Hi, my name is Sarah. I live in New York City, and I was diagnosed with type one diabetes just over two years ago in June, 2022

Scott Benner 2:32
How old are you now? Sarah,

Sara Lerner 2:34
27 years old.

Scott Benner 2:36
Okay, so you're 25 How about in your family? Is there like, just like a thought like, Oh, I'm definitely gonna get diabetes, because everybody has it, or thing you never heard of before, somewhere in between, yeah,

Sara Lerner 2:47
not something super familiar with. I do have one cousin with type one. Her dad has type one as well, who's not on my blood related side, but it wasn't even something I was super cognizant of growing up. I had one or two friends who had had type one, but it really was not on my radar when I was diagnosed.

Scott Benner 3:03
Wait, Sarah, you have a familial side that's not blood related, like, like a step father's brother or something like that.

Sara Lerner 3:08
The cousin is blood related, but her dad has it who's not blood related?

Scott Benner 3:13
Oh, I see. I don't know why that confused me. I apologize. I was like, Sarah's related to people she's not related to. What a great story. And she has it though, the cousin, yes,

Sara Lerner 3:22
but we didn't grow up living in the same country even, so we we weren't super close, so it wasn't something I thought about until, actually, a few months after I was diagnosed, one of my uncles said, hey, you know, your cousin has this too, and I hadn't even remembered. So that shows you that she was living with it really well, and that I wasn't, I wasn't even aware of all that was going on. But I think it's also one of those things that until it happens to you or you have a really close friend or family member with it, it's not necessarily on your radar, unless you live with

Scott Benner 3:48
it. Yeah, can I ask if you don't know, but does her the cousin, does her mother, have autoimmune issues? I actually have no idea. I'm interested, because if the father has type one, and the mom has auto immune. Then, is that, you know? I mean, like, is that the recipe that gets you there faster,

Sara Lerner 4:06
you know, I will go find that answer out. But I know auto immune stuff runs in my family. I mean, you know, we did the I sent the screening information to my siblings. I'm one of four kids. I believe two of the four of us did it, and I know one came back with, you know, positive auto immune. The other one did not, I don't know about the the other brother,

Scott Benner 4:27
Oh, wow. I'm glad you shared that with them. That's, that's awesome. And so awesome. The two of the three of them did it by, by the way, most people don't. So, yeah, yeah, you got a good return there. I did. So there's auto immune in your family, your mom, your dad, grandmothers, grandfathers, what's what's going on. I'm going to

Sara Lerner 4:42
sound really ignorant here, but I don't know the whole history of our autoimmune and haven't really dug into it. I should. I should go into it more. Now, you know, there's some blood conditions that run in the family. I know there's some different autoimmune pieces that people have. I have a few different health things that have gone on my whole life, but this is. Only one that really came up as a as an auto immune siblings with auto immune, as I mentioned, but it wasn't something that we grew up thinking like, Oh my God. We're this family with all of these auto immune issues, right?

Scott Benner 5:10
What were your other health issues growing up? I

Sara Lerner 5:13
was diagnosed with Ehlers Danlos Syndrome when I was in high school, connective tissue disorder, so that's something I was kind of always aware of. But, you know, it didn't deeply affect me, other than, you know, when I played sports, things were a little bit harder. Sometimes my feet were really flat. Led to some some injuries that I now currently have, a broken leg that probably has something to do with that condition as well. So it's just come up throughout my life, but hasn't been been the story of it, the way that type one came and became, yeah, now

Scott Benner 5:43
I'm gonna find out more about the so you got an auto immune issue when you were a kid. And that's for people who don't know that's ligaments and stuff extra stretchy, kind of that feeling, right? Yeah,

Sara Lerner 5:52
and you know, there's different types of it, so mine is more hypermobility. So I wouldn't, you know, there's genetic markers for it, but I wouldn't even it wasn't really an autoimmune issue that

Scott Benner 6:02
I had. It is, though, by the way, it is an autoimmune disease. Yeah, I just

Sara Lerner 6:05
didn't have any other, you know. I didn't have the heart condition related or anything else. Mobility, yeah, I see yours was stuck to the mobility, different strains of it, different types. Yeah. Oh, lucky

Scott Benner 6:16
you. Now, okay, how does the type one rear its head like, what makes you realize that something's going on?

Sara Lerner 6:24
Yeah, well, I was getting sicker for about four months. I'm sure that I was aware of some of the signs and symptoms just from growing up. I was an EMT volunteer EMT in college, so there are things that we learned about, you know, DKA and looking out for, but when it's yourself, you're not necessarily realizing that. So I was getting sicker. I knew something wasn't right, seeing a bunch of doctors. Nobody took my blood, unfortunately, until I was, you know, walking around New York City, passing, feeling like I was going to pass out at any moment. I got a COVID booster shot, actually, and that was kind of what got me really, really sick. You know, some people threw up once or twice after that, but I was throwing up constantly and just wasn't getting better from it. I think conversation with my mom where she said, Sarah, you really need to find someone to quarterback this like I know you something's not right. You're falling asleep during the day, like you're losing weight. Get to the doctor. I finally had a blood test drawn, and I was hospitalized the very next day for for several days. So a lot of signs that I think I wish I had recognized earlier, but once, once I did get into great care, it was, it was much smoother sailing from there. But I will say, like many people who are diagnosed as adults immediately in the ER, they said, you know, given your age, this looks like type two diabetes. We're going to start you on Metformin, you know, we need to, you know, give you insulin to bring your blood sugar down. And I was lucky, and then my antibody test came back while I was still in the hospital. And so I didn't live with that misdiagnosis for very long, as many people do, right? But I hope that you know, a takeaway that everyone who meets a type one who gets diagnosed as an adult is, is that, like adults do get diagnosed with this and and that stat is only rising.

Scott Benner 8:03
Hey, how long till your mom was like, I told you something was wrong.

Sara Lerner 8:07
Well, when I got hospitalized, my mom, you know, I grew up in Baltimore, and my mom got on a train within minutes, I think, with no belongings, and was in the hospital with me. So she was, she has been, you know, champion supporters. Has my whole family since day one, and everyone has really rallied around me. But she definitely knew, as moms tend to often know, that something, something was up, and I needed somebody to really help quarterback that care.

Scott Benner 8:30
What a lovely woman. She didn't roll right through the door going I knew it.

Sara Lerner 8:35
She might have said to other people, but I think I was it could have happened to me too, but I think I was too overwhelmed to realize nothing but support from there,

Scott Benner 8:42
you don't remember, but on the train up everyone she bumped into second, I was telling that girl, something was wrong. She don't listen to me. And

Sara Lerner 8:50
I think she was more bummed that she didn't know the diagnosis. And was like, How did I miss this? And I'm like, Mom, you are not a you know, you're not a doctor. It's okay. But I think it was more on that might help me not realize what this

Scott Benner 9:01
says. That's very nice. Okay, so how do you leave the hospital? Meaning they know you have type one because luckily, you got the auto antibody back, right? But is it like, here's some needles like go to the pharmacy, especially in New York City. It's kind of a different vibe. So what do you physically leave the hospital with type one diabetes? Can happen at any age. Are you at risk? Screen it like you mean it. Because if just one person in your family has type one, you're up to 15 times more likely to get it too. So screen it like you mean it. One blood test can help you spot it early, and the more you know, the more you can do. So don't wait. Talk to your doctor about screening tap now or visit screen for type one.com to get more info and screen it like you mean it. Yeah.

Sara Lerner 9:49
So I was actually discharged straight into outpatient care, which is very rare. So I got in with the endocrinologist in New York, and I literally went from inpatient hospital. Hospital too, I believe we got in a taxi with a whole lot of different medical supplies and went to my outpatient Endo, who I'm still with today. And so that was a very fortunate experience. And she sat with me for at least an hour and just answered questions non stop. And so I did meet with, I think, an educator in the hospital. Gotta be honest, I don't fully remember what happened in that hour long or 30 minute session? Or I'm pretty sure she taught me how to, you know, take an injection. They slapped a CGM on me in the hospital as well, which was, you know, helpful to have that from from day one. And then I did go straight into my endocrinologist office and got my tumd, 101, and in another thing that was really rare, credit, credit to the care that I've gotten at NYU, my doctor gave me the off, you know, off hours number, and said, Call me every single night for the first two weeks, we're going to adjust your your ratios together. This is going to be a team effort. And I want you to learn how to call this number. I want you to learn how to give yourself shots. But we're going to work on this together. And so that first two weeks, we really spoke, I think, every single day, as I figured out how to get my blood sugar down from, you know, the five hundreds, and I was diagnosed with an A, 1c over 13, and we got it down together.

Scott Benner 11:12
How much weight did you lose before you knew you were type one? I don't

Sara Lerner 11:17
actually know, you know, a number there. I was going to the gym really regularly for the first time in a good, good while. So here I was thinking I was killing it at the gym. And then we, you know, kind of realized that it wasn't, it wasn't a natural situation happening in a in a positive way. So I don't know, but I would guess, like, probably 1015, pounds.

Scott Benner 11:35
You're not a big person, because I met you once in person, right? Like, am I remembering correctly? You're You're slight, right? Yeah, I

Sara Lerner 11:42
think pretty average, yeah, look at you.

Scott Benner 11:46
I don't know if you took that wrong or not.

Sara Lerner 11:50
I now have a really good exercise regimen that you know. I've always been athletic. I've always played team sports growing up, and now have continued that on as an adult, but I do exercise fairly regularly. But, you know, average height,

Scott Benner 12:04
okay, yeah, no, no, I just, I meant, like there was 10 pounds when you might be a fair amount of weight. Yes,

Sara Lerner 12:10
look pretty pale when I when, you know, when I look back and see some pictures from the days leading up to my diagnosis, and I, you know, I would remember I was at a friend's birthday the day before I got diagnosed, and I was craving sugar like crazy at that time. So who knows what I did to my blood sugar that day eating like cake and cupcakes and ice cream. And I've never had that big of a sweet tooth, but in those months leading up to my diagnosis, like I my body was craving sugar so much that I was like every time I worked out, I was getting a smoothie afterwards, because that's what I kept feeling faint, and then I would have it and I would feel better, you know, I don't know what I did to my body in those months leading up to my diagnosis. Something.

Scott Benner 12:45
Wow. Okay, so now today, you have a job around diabetes, so I want to figure out from being diagnosed two years ago, like you weren't in this kind of work then, right? No, I

Sara Lerner 12:57
mean, I was a social worker, so I did work with in health and education, mostly with kids, and was working, you know, in that realm, I did make a jump into the T 1d space, and I credit that a lot to getting involved with the T 1d community. So early on, I'm a community person. I'm a relationships person. And so when I got this, this diagnosis, I think within three weeks, I had new friends with type one diabetes. I had gone to a meetup in Central Park three weeks into my diagnosis that I had kind of coincidentally found out about one of the girls who was at that Meetup is one of my best friends today, and I've met so many other people from from that community. And so I would say I have this mentality of, I need to I need to get my own care set. I'm going to lean into this community. I'm going to get involved. And then I think I probably knew while I was in the hospital that I would work in this, this space. One day, I recognized the, you know, the privilege that I was experiencing with my diagnosis, with the disease, with my access to technology and care, and never wanted to take that for granted. And knew I wanted to shift, shift into the space professionally. Wow. So where do you work? Tell people where you work. Yeah. So I work at Blue circle health. We're a non profit organization, and we have a T 1d free care, education and support program funded by the Helmsley Charitable Trust to improve the lives of people living with type one diabetes. We have this, this program. It's a virtual six month program for adults 18 and up. You know, we're live in five states right now. So it's live in Delaware, Florida, Maine, Vermont and Ohio. And we will be expanding to other states soon. And we exist to close the gap between what you get when you you know, have this disease from the traditional healthcare system versus what you really need to thrive. You know, when I say, I recognize my privilege and came into this disease getting a lot of resources like I did. I was able to get into a, you know, coaching program and get external education, diabetes education, and find community support, train my dog to be a diabetic alert dog. You know. Have a therapist who I adore, and has given me so much support through this diagnosis. So I received all this external support. I had a great healthcare team too, but I only get to see them twice a year to be able to have all that external support is what allowed me to manage my diabetes with confidence and get to a place where I felt like I was thriving with my type one, and so now with blue circle health, we have this program where we're able to fill in the gap from what you get from the traditional healthcare system and give people that education and that support. So we have diabetes educators on our team. We have endocrinologists on our team. We have social workers and we do, you know, case management and diabetes supportive counseling. We have insurance navigators, which, you know, personally, that's probably the area I need the most help with, because it's the most complicated to navigate for me, at least on a day to day basis. We have two and D support guides who all live with this disease and and can help me navigate the program, offer peer support, run group sessions. And we also have some other specialized services available, like a Prescription Assistance Program, but we'll pay for people's prescriptions. We have a CGM trial program. So there's all these supports that kind of seem a little overwhelming to manage all that, but it's really like a la carte, you know, patients get individualized care plans, and so, you know, you can use as much of those services as you need, or as little as as them, as you need, up to six months. So you may come in and say, I just want to meet with the insurance navigators and your educators three times and like, great, that's it. You may be out of there in a month. A lot of people we find, you know, stay for the the full six months, though,

Unknown Speaker 16:34
is it virtual?

Sara Lerner 16:36
It is virtual. So that's one of the eligibility requirements, is being able to connect with us virtually.

Scott Benner 16:41
Okay, so how does that? How does blue circle begin? How long has it been available? Like? How did it start? What do you, I mean, I know you, you haven't been there that long, but what do you know

Sara Lerner 16:50
about it? Yeah. So I joined the team in March, and at that time was when we were first really coming out to the world and saying, Hey, we exist. So before that, we were just in Florida. We, you know, started because there is a group of people at the Helmsley Charitable Trust sitting around and saying, What can we do to fill this gap? Like, we know the gap is there. What can we do to help people who live in the US and are struggling to manage this disease? Like, what can we do for them? And creating this virtual program with patient care as our North Star, as being able to work outside of the traditional health care system. We don't bill insurance because insurance system is what makes it so complicated sometimes to get the care you know that you really need, need and want, and what our providers want to give us, they often can't, because of that reimbursement system. And so a group of really amazing people sat together, and they dreamed this up, and it started with diabetes education, and then all the other service lines really built from there, from peer support. And our program was, first, you know, full services operating July a year and a half ago, and then in in around March this year, really January this year, but starting going out to the world in March. We opened it up so that patients could enroll themselves. They could go to our website, blue circle health.org and sign up directly. We still get provider referrals to, of course, but this is something that you know should be available to everybody, and we want to show what to Andy care can and should look like in this country. And we're out there trying to, trying to do

Scott Benner 18:14
that. And for right now, for five you're in five states. Is that right? Five states right now?

Sara Lerner 18:19
And then we'll keep steadily expanding throughout 2025 no more new states in 2024 we just went to Ohio and Delaware, November 1. So that was the last expense expansion of 2024 but then we'll keep expanding in 2025

Scott Benner 18:33
so basically, all these different ideas, like service points that you have, these people all also aren't at a location. They probably working from their homes or whatever. And then I meet you somehow, and I'm like, I just got diabetes, and I don't understand this stuff, but I don't know how to Bolus for my food. And you can put me through like courses to help me manage insulin. Contour, next.com/juicebox that's the link you'll use to find out more about the contour next gen blood glucose meter. When you get there, there's a little bit at the top, you can click right on blood glucose monitoring. I'll do it with you. Go to meters, click on any of the meters, I'll click on the Next Gen, and you're going to get more information. It's easy to use and highly accurate. Smart light provides a simple understanding of your blood glucose levels. And of course, with Second Chance sampling technology, you can save money with fewer wasted test strips. As if all that wasn't enough, the contour next gen also has a compatible app for an easy way to share and see your blood glucose results. Contour next.com/juicebox and if you scroll down at that link, you're going to see things like a Buy Now button. You could register your meter after you purchase it. Or what is this? Download a coupon. Oh, receive a free contour next gen blood glucose meter. Do tell contour, next.com/juicebox head over there. Now. Get this. Same accurate and reliable meter that we use this episode of The Juicebox podcast is sponsored by the Eversense 365 get 365 days of comfortable wear without having to change a sensor. When you think of a continuous glucose monitor, you think of a CGM that lasts 10 or 14 days. But the ever since 365 it lives up to its name lasting 365 days. That's one year without having to change your CGM. With the ever since 365 you can count on comfort and consistency. 365 days a year, because the ever since silicon based adhesive is designed for your skin to be gentle and to allow you to take the transmitter on and off, to enjoy your shower, a trip to the pool or an activity where you don't want your CGM on your body, if you're looking for comfort, accuracy, and a one year wear You are looking for ever since 365 go to ever since cgm.com/juicebox, to learn more.

Sara Lerner 21:07
It's not courses, it's really one on one, direct patient care. And so yes, we do have people all over the country who are on our team and able to connect with you virtually. They are licensed in the states that we're live in, and that's part of the reason why we're alive in those specific states. All of our providers are licensed in the states that that we're live in. They're giving you one on one attention, and sometimes, you know, it can be nine months until you can get in with your Endo. We make that turnaround time a lot quicker. So if you were to go on and, you know, be eligible to sign up for our program, let's say in Florida right now, on a business day, usually within three hours after signing up on the website, you get a call from our clinical enrollment specialist, and you start the process of getting in, and you may have your first appointment with our endocrinologist or an educator, an insurance navigator, within a week, easily. So it's it's really about giving people the care that they they need and deserve immediately. How

Scott Benner 22:00
long is like, when I get set up with the endocrinologist, like, how long do I sit with them? That

Sara Lerner 22:04
appointment can be up to an hour, and it's free. It's totally free.

Scott Benner 22:09
So we're understand, hold on.

Sara Lerner 22:12
Like, what's the catch?

Scott Benner 22:13
Stop it. Yeah, I feel like you're gonna be like, and then you have to send us your kidney and release because we sell them. Hold on a second. I understand Helmsley is behind it, yeah, but it's all public information, right? But, like, you don't make any money. No,

Sara Lerner 22:27
we don't. So we don't bill we don't charge anything. We are fully funded by the Helmsley Charitable Trust, so it's incredible, you know, generous work that they're doing and that they're able to, you know, fund us to make this happen, and we're able to dream big for people with type one, and we're constantly working on making this program better for our patients. We're really big on feedback. We're really big on collecting all of the information we can to improve this be as efficient as possible. But the goal here is to really keep patients as our North Star and do what's best for them, and that's how the entire program has been built and developed and maintained. And, you know, the majority of our clinical staff, they live with type one diabetes. So these are people who get it, and there's a lot of people beyond the clinical staff who live with it too, like myself. You know, I'm not a patient facing member of the team, but I live with type one I work with Scott Johnson, who many people know from being in the T, 1d, community for for many years, he lives with type one. And so the team, the team is really mission driven, which has been the coolest environment I've ever worked in. No

Scott Benner 23:32
kidding. So how many people work for blue circle?

Sara Lerner 23:35
I think we're close to 45 right now.

Scott Benner 23:38
Get out of here. Yeah,

Sara Lerner 23:40
we got a pretty, pretty large, growing staff. What

Scott Benner 23:43
happens if we put this podcast up and 2000 people call blue circle health, they still gonna like sign up tomorrow and get going? Yeah,

Sara Lerner 23:51
you know. So we have built out systems for wait lists and whatnot, just in case, in case that happens. But we've actually found that that that hasn't been the case yet, because people need to hear, hear from people who have gone through the program that there isn't a catch. Because right, like we've been taught nothing is is free in health care, and here we are saying, Hey, we have this free program. And so having people you know meet us, we're going to events. I met you for the first time at the touch by type one conference. So we're showing up events to say, hey, we're actually real, but we've had to do a lot of myth busting to get the word out. So I would encourage anybody listening to like, if you know an adult who lives with type one who's in one of the states I mentioned, Florida, Delaware, Maine, Vermont, Ohio, tell them about this program. Tell them about this resource. I really believe that there's something for everybody who lives with type one that they could benefit from this program. And and if there's not, I want to know it. We want the feedback. But I truly believe this is, this is top notch care. Sarah,

Scott Benner 24:46
when I met you at touch by type one, you started explaining this to me. I was like, This sounds like a scam

Sara Lerner 24:55
battle we're facing. And you know, my circle health is, is partner relations. So I spend my days talking to. Providers. I talk to patients directly. I talk to nonprofit organizations. And I love getting to do that, because I get to myth bust every day and be like, No, this is actually real. It's out there, and it's an incredible resource for the T and D community. It's a blessing that we're able to do what we do every day. And I'm, I'm excited for it to be even bigger as we spread the word. And, you know, work with partners like you to spread the word. But this is a resource that belongs to the T 1d, community, and I'm excited to get it out there.

Scott Benner 25:26
I'd be remiss if I didn't ask you this. So, like, somebody found blue circle six months ago, right? And they're like, Hey, what's up? I'm an adult living with type one. My A, 1c is, like, 11 and a half, and I struggle all the time. Blah, blah. Like, if I found that person today, are you tracking their outcomes? Like, are you seeing how it's going? Do you see what I'm saying? Yeah, someone who signed up six months ago, yeah? Like, are they in a better place today? Yeah, absolutely. So

Sara Lerner 25:50
we're tracking that. We're tracking so many, many things. And you know, there's a lot of data scientists and engineers on our team who are doing great work on that, and because we've only had our program in its full form as it is now, for under a year, really out in the world, we are still getting some of that information back, so I think if you come back to me in three months, I'm going to have a lot more data to share with you. But our initial, you know, feedback, our net promoter scores, are wonderful. The feedback we're getting from our patients and providers is great. You know, I just heard a story last week of a patient who we saw really early on, and you know, she said her ANC is, is the best that it's been in in many, many years. And so we do hear those stories. We do have access to some patients, you know, CGM data, if they're on CGM. And so there's, there's a lot that we're tracking. We do a DDS score. So we're, we're looking at diabetes, distress at entry and exit. We're learning as much as we can, because we want you know, as I said, patients are a North Star. We want to deliver excellent patient care. That's our that's our mission here. But our mission is also to show what this can look like in a much bigger scale throughout the country. And so we are, we are taking those learnings so that hopefully this can have policy implications one day.

Scott Benner 27:03
Awesome. It's really great. How long are you funded for? Like, do you have a an amount of time, or you have to make this work? Or they're like, yeah, it's enough of you. So

Sara Lerner 27:10
they fund in three year cycles. But we're very confident that funding is going to be with us for a while. And with the funding that we have right now, we're able to care for 1000s, which is amazing. You know, I think there's, there's going to be a point when we want to be in all 50 states, and we want to be caring for 10s of 1000s of people, then we'll have to look into, you know, what does it look like to to have additional funding sources here? But where we are right now, we're very comfortable.

Scott Benner 27:37
I'm going to, I feel like I'm going to say something, but I don't want to be controversial, because I'm about to get, I love getting this story out about this, but I love this a little extra, because I have like, a, you know, there's some things in the world that bother you, yeah, so listen, I take ads, right? So I make a living making the podcast. So I don't want to come off, like, I'm just over here doing it, and, like, you know, like in the evenings, after work, like, it's a job I make a living, like, so I want to be clear about that. I've always been, like, you talk about North Star, like, when I started doing this, the way I thought about it was that people shouldn't have to pay for good health. Like, that didn't make sense to me, right? So you know, where a lot of people might, you know, make a podcast popular, and then tell you a couple things. Then say, Hey, if you click on this link over here and pay me. And pay me, I'll tell you the rest of it. You know, a coaching model, or something like that. And I, by the way, this is going to sound like I'm talking in circles for a second, Sarah, but I have two actual minds of thought about this. I don't mind people making a living. If you want to go out there and do like health coaching, I say, God bless you. I hope it helps people, right? But from my perspective, I don't like that. It costs people money, and so, like, the one thing you won't hear on the podcast ever is a health coach. Like, I don't allow health coaches in my private Facebook group. I don't let them on the podcast because I am not about you selling what, in the end, ends up being explaining to people how to, like, set their settings up and pre Bolus for their meals, and how to Bolus for fat. Like, I don't think you should be selling that information to people, so I make it all very available, very free on the podcast for the people listening. I'm very proud of that, but I am also a little personally irritated when people make money with coaching. So I not that I don't think it's necessary or Okay, and Sarah is not going to bad mouth anybody, because she's here kind of in an official like, I'm not bad mouthing anybody either. I don't like it personally. Like, I think, like, find another way to pay to get them this information. I found a way I sell ads on a podcast, right? And you guys found a way. And I think that's really awesome. Like, I'm super excited that you're gonna be helping people and not charging them money. I think that's wonderful. So thank you and anybody else who's involved in it, because I think it's really great. You don't have to respond even to all that stuff. I just said, I'm not asking

Sara Lerner 29:49
you to I think, look, health care in this country is an incredibly complicated thing. Our program is not available in every state, right? We want that to be the goal. And so we want this to spread. We want this, you know, we have to. Work hand in hand with the existing health care system to do what we do, and we love doing that, like we act as an extension of somebody's care team. That is, you know, a huge part of our mission, part of our eligibility requirement, is that our patients have a medical home or are willing for us to be, you know, connect them to one. Because we're a short term program. We want people to have that in person care. We also recognize that some people can't meet with a diabetes educator. I think I've only met with my diabetes educator once or twice since my diagnosis, and that's just because the health care system is complicated. So I say like, for anyone who can go out there and seek external resources and afford it like, that's amazing. That's an extra thing that you know you can do. We also want to make this available for people who can't afford it, and we started by recruiting out of free clinics and federally qualified health centers and giving people who had predominantly only seen a primary care doctor to manage their type one diabetes some specialty care. Now we've opened the doors and say, Hey, anyone who needs to help with their T 1d and is eligible, like, great. Sign up. We do this program, you know, in English and in Spanish right now, hopefully one day that's even, even more languages. But this is, this is a resource that that really belongs to the people with type one, but for anyone who can access additional resources, like, I support, you know, whatever you can, can build in your circle. Oh, listen, I

Scott Benner 31:17
for everybody that can afford it. Like, it's cool. Like, if you want to go buy a, you know, rent a health coach. I think that's awesome. Like, go do it. You know what I mean, like, but for all the people who can't afford it. So for as long as I've been in this space, a back room, conversation has been about reaching more people. Like, it gets nice to say, like, oh, I have a podcast, or I'm a coaching service. And people who go with me, they leave with, like, five, a, one, CS. It's awesome, but like, you're reaching people who have that access. You're reaching people who have the time, who have the wherewithal, who have the money to pay and what about everybody else? And I always hear people talking about, what about everybody else? But then nobody does anything about it, and this is actually doing something about it. Absolutely, yeah, I think it's even, I'm gonna listen. I'm just gonna come out and tell you, Sarah, like, there is very likely no other entity, person, whatever, in the diabetes space reaching as many people as I do, and I reach a small fraction of people with diabetes.

Sara Lerner 32:12
That's what we're finding, too. Is like the Facebook communities, like the one that you have built, that is where so much of the conversation is happening. And so that's where I'm hoping that we can take blue circle health into these groups too, to make sure that people know, hey, like, if you're eligible. And a lot of times it's parents who are in those Facebook groups with kids with type one who, of course, will become, you know, 18 and older and be eligible for a program. And we do a lot with that transition. You're going from Pete's to adult, you need a soft landing pad. It's a while till you can get into an adult endo or you're navigating new challenges of college early career. Like, we can help fill that gap. It's a huge area that we help, but a lot of times in these Facebook communities, it's not actually adults with type one who are there, but it's a powerhouse moms and dads and caregivers. So we're hoping to use that to spread the word about this resource and to be able to share, but it's also finding people who have said, like, I want this to be in the background, like, I don't want, you know, type one to be something that is my identity, like I'm the weirdo who's chosen to do that, right? Like, I talk about this with my team all the time, like we're like, we're the T, 1d, weirdos who have made this our careers and made this our social circles, and that's not the average person. So for us at Blue circle, like a huge task is like, how do we find the people who they may not want the T and D community to be their biggest thing, or they may not realize what that you know that could fill in their life right now, but how do we find them and offer them an extra hand so that they don't feel like they have to carry the burden of this disease all

Scott Benner 33:35
by themselves? Yeah, everyone needs help, like, right, but children and adults, but adults, I think, specifically because they don't have a parent with them, like, maybe you're going to get lucky and get a decent parent who jumps on a train and goes from Baltimore to New York, because you need help, right?

Sara Lerner 33:49
Does not do it justice for what my parents have done for me and my siblings and, you know, the whole, my whole friend group has has really rallied around here. It's

Scott Benner 33:58
amazing, but a lot of people don't have that right? Sometimes people have parents, and their parents just aren't like, go getters, you know what I mean, or they don't understand diabetes or whatever, but at least they're still with their parents, and they go to their doctor's appointments and they get to see doctors, you know, like they have more touch points. But once you become an adult, and you're by yourself, and if you didn't have good diabetes knowledge or practices as a child, and you become an adult with diabetes, it is only going to go in one direction. You know what I mean, like you and you need something that is, is a base. It's a firm foundation to say to you, like, look, here are the I mean, Sarah, this entire podcast, if you listen to the management stuff, it's really very simple stuff. No one's saying anything crazy that nobody knows about except for me. You know what I mean? Like, it's just, it's about have your basal right, Bolus for your food properly. Don't look at a high blood sugar all day. Bring it back down. Trying to be scared of being low. Fix it. Get back, don't, you know, don't get up on a roller coaster, up and down. Like, I actually think that once you have those, those tools, you. Diabetes is manageable, right? And I don't want to say easy, I don't mean easy, but it's easier when you understand the foundational stuff. And what I've come to learn over a decade is that most people don't get foundational information ever

Sara Lerner 35:15
Well, and what you don't know you don't know. So if you're taught one thing, like, I still remember that, you know, I was taught every time you go low 1515, grams of carbs. And so that's what I thought was the prescription there. And then I was going high every time I was doing that, and I was honeymooning at the time, and I I just didn't know that, you know, we were in control of adapting that, and that I could be empowered to make my own choices about that, and that, you know, I may not need a 15 grams of carb snack every time I was dropping a little bit low, and it may look different. And some days I only need five grams of carbs to correct a low, and sometimes I need 30 grams of carbs to correct a low, depending on so many factors of insulin on board and what activity I was doing and how fast it was dropping. And it's just impossible to put all that into a doctor's appointment once or twice a year.

Scott Benner 35:59
Never gonna happen. And I have found, speaking to countless adults over the years, that the ones who feel empowered to change their settings right to adjust their insulin, they're the ones that do better, and the ones who think I have to wait until I talk to the doctor, because he'll know better, she'll know better. I gotta wait. And they wait three months, the doctor turns their basal from point, you know, six, five to point seven. Like, let's see what this does. Well, the answer is my A, 1c, is like, you know, eight, it's gonna not do anything and like, and then we'll wait three more months and do it again. And then that gets frustrating, and the doctors forget. They don't listen. God bless doctors and all, but they don't remember you the last thing they do before they walk in the doors, open up your chart and go, okay, and then they run through the door. You remember them, because you're, you know, they're your doctor, but they look at you like, oh, you're a pat. I remember pat a little. They're not tracking your health the way you can, right?

Sara Lerner 36:55
And we have too many tools to do that now too, that it's just about learning how to to use them to our strength. No, 100% like

Scott Benner 37:01
this is super exciting, because I think you're going to learn a lot while you're doing this as well, lessons that maybe leap over the patients and go back into health care again, because you're you're paying attention, you're in a, you know, I mean, a few 1000 people. It's a nice, focused experience where you're going to really be able to, like, see lessons, see what repeats, start saying when we do it like this, this works more frequently, you know. And then that's good advice to hand out to doctors, too. I can see a world where one day doctors can come to blue circle to ask questions about, like, you know, what are the foundational steps? Like, what do I do to put these people in a good position? Because I don't think they know either. This is really cool, this is this has a lot of like, upside potential. You must be excited to be involved with it

Sara Lerner 37:46
absolutely. I mean, it feels like the the great honor of my life, and I don't say that lightly, to be involved with this organization and this group of people that's making it happen. There's just so much heart, like I go to work every day with this a smile on my face, getting to do what I do every day, and with this group of people, and most of them, I've only met in person once, you know, and actually it was my second diversary this year at our team retreat. And so I was still fairly new on the team, and I just was reflecting that day being like, wow, I couldn't imagine being in a cooler spot right now in my T 1d journey than at this in person team retreat on my second diversity and able to think about, you know, where I came from day one, because it has not been, you know, smooth sailing from the start. There was a period of time where I was eating the same thing every day for breakfast, lunch, dinner and like, that's what felt comfortable. And I had to learn How to gain Confidence with my T and D management, and now that I can work in this space and be, be putting this out there for other people with T and D. It's, it's an honor. Awesome.

Scott Benner 38:45
That's really something. Okay, let's go over it. Where somebody's listening to this, they're like, I'm going to try that. Where do they go? Yeah.

Sara Lerner 38:52
So blue circle health.org, you can sign up from our website. There's a button there to sign up yourself. You know, if you're a provider listening to this, you can there's a button that you can refer patients to sign up on the form. There's also, you know, a phone number that's listed on our website that you can call to with filling out the web form. You're like, I want to talk someone. I want a little more before, before I do this, you can do that. You can reach out to our team, team at Blue circle health org, via email if you fear, like, Hey, I'd rather, you know, set up a time and figure something out to talk and learn more about this. But we're on Instagram, we're on Facebook, we're on LinkedIn, trying to tell our story and share, share what we're doing. And so if you want to go explore, check it out. If you're like, I don't live in one of the states that you mentioned yet, Sarah, but hopefully you're coming to mind soon. Give us a follow. You'll be the first person to know when we go live and and I'm always happy to connect with people and share more so you can reach out to me. My email would be connect at Blue circle, health.org, and I would be more than happy to get on a phone with you, a zoom call and chat more about what we do. We're also showing up more at events like I saw you at, touched by type one and conferences actually was in Columbus, Ohio on Saturday for Ohio. Diabetes Day. So we're getting out there, and my team will be in Chicago for a conference this week, so you'll start seeing us, hopefully around more, but until then, you know, sign up on the website. Give it, give it a try. And I really hope that we can help you, and we feel honored to be part of your two and D Journey. Jeez, this

Scott Benner 40:18
is great. Oh, I'm so excited about this. Oh, thank

Sara Lerner 40:21
you so much.

Scott Benner 40:22
Seriously, actually, can I ask a personal question for a second? Absolutely. So you said you made your dog into a diabetes alert dog. You just come home and go, Hey, listen, rover, I got diabetes. Now you got to get involved. Or, like, how did that happen? Basically,

Sara Lerner 40:34
but his name is Louis, not rover. Now, okay, when I was hospitalized, one of the like, obviously I was not feeling, feeling my finest as I was getting, you know, re acclimated, and my blood sugar brought down. But one of the hardest part was that I lost my my vision. It was extremely blurry for about three weeks. But the worst was the, you know, five days I was in the hospitals, the sugar was coming in and out of my lenses, so I couldn't even use my phone or read a text at the time, my dog, Louie, was about a year and a half at the time. So I there, there again, mom, super hero. Mom was, you know, by my side. And I said, Mom, my dream would be for Louis to be a service dog. Like, can you look up? Can your your dog become your adult dog, become a service dog? So that's what I had my mom googling from the side of my hospital bed. I had wanted him to be a therapy dog. I said I was, you know, working in schools as a social worker. And so I'd seen dogs that went and you helped kids get confident with reading. And so he had great basic obedience foundation, but he had no, you know, he was a silly dog and had fun. And he's, you know, 50 pound doodle mix. I wasn't sure what would happen there. We found many dogs training. They're based out of Wisconsin. Annie, the head trainer, is absolutely amazing, and she has a program where, you know, she does board and trains and will fully train dogs, but she also has, you know, the ability to do an adult, you know, an adult dog owner training program. And so we zoomed twice a week for almost two years before Louie was fully, you know, a service dog, and passed his his test for public access, but he was alerting me within about six months. So he learned how to do my high and low blood sugar alerts, and he will go on runs with me and alert me. You know, he's he's sitting by my side right now, sleeping on the couch, but if my blood sugar dropped or rose, he would get off and come wake up and alert me. Same with overnight. He can smell it in his sleep, which to me, is still the craziest thing to wake up. To them wake me up. And he's usually 20 to 40 minutes ahead of my CGM. So I always say, like the technology is a huge tool, but it lags. It's not always correct. I trust Louis 1000 times over, and he sometimes will alert me at 130 and say it's low. And I'm like, really, like, Are you sure? And without fail, like the blood sugar is dropping within 20 to 40 minutes, is if he's given me that alert. So he's, he's pretty amazing. And there is actually, like, we've, we've worked, I've worked with Annie to start a diabetic alert dog scholarship program there to make it something that's more accessible to other people too. Because it's expensive owning a dog. It's expensive training a service dog, and it's something that has been a silver lining of my diagnosis, for sure, getting to go through life with Louie and train him, and have this extra, extra tool and silver lining. So we're hoping to make that available for more people

Scott Benner 43:15
too. Oh, what are you trying to be a saint? What's going on here?

Sara Lerner 43:19
I told you, you know, I've had a lot of a lot of people looking out for me since my diagnosis, and an amazing support system, and I've been able to take advantage of a lot of resources. So anything I can do to give back to this community, I want to be a part of

Scott Benner 43:31
lovely I feel the same way. Actually, that's wonderful. Am I missing anything? No.

Sara Lerner 43:35
I mean, I would just say that, like with blue circle health to me, like, you know, that's why we started this conversation. I'm so excited to be here spreading the word about spreading the word about that. And so do you know somebody, if you can share something on Facebook, Instagram, anywhere you're at in Facebook groups, know somebody who could use a hand with their T 1d please, please let them know about this resource. It's really free. It's really here to help adults living with type one diabetes. Florida, Maine, Vermont, Delaware, Ohio, more states coming soon. Please check out our website and sign up if we can help you out.

Scott Benner 44:05
Awesome. Okay, great. I appreciate you coming on doing this. Thank you very much. Thank

Sara Lerner 44:09
you so much for having me. Oh, of course, it's my pleasure.

Scott Benner 44:18
Your Kids mean everything to you, and you do anything for them, especially if they're at risk. So when it comes to type one diabetes, screen it like you mean it, because if even just one person in your family has type one, your child is up to 15 times more likely to get it. But just one blood test can help you spot it early. So don't wait. Talk to your doctor about screening tap now or visit screen for type one.com to get more info and screen it like you mean it. The podcast episode that you just enjoyed was sponsored by ever since CGM. They make the ever since 365 that thing lasts a whole year. One insertion every year. Come on, you probably feel like I'm messing with you, but I'm not. Ever since cgm.com/juicebox Arden started using a contour meter because of its accuracy, but she continues to use it because it's durable and trustworthy. If you have diabetes you want the contour next gen blood glucose meter. There's already so many decisions. Let me take this one off your plate. Contour next.com/juicebox if you or a loved one, was just diagnosed with type one diabetes, and you're looking for some fresh perspective, the bold beginning series from the Juicebox podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginning series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698, in your podcast player, or you can go to Juicebox podcast.com and click on bold beginnings in the menu. Learn more about what you heard today at Blue circle health.org I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of The Juicebox podcast. The episode you just heard was professionally edited by wrong way recording, wrong way recording.com, you.


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#1357 Caregiver Burnout Series: Part 2

Scott Benner

Negotiating the emotional and psychological burdens that caregivers experience, with Erika Forsyth.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon MusicGoogle Play/Android - iHeart Radio -  Radio PublicAmazon Alexa or wherever they get audio.

+ 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
Here we are back together again, friends for another episode of The Juicebox podcast.

Erica and I are back again today with part two of her caregiver burnout series. Please don't forget that nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin when you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. Ag one.com/juice, box. Don't forget, if you're a US resident who has type one, or is the caregiver of someone with type one, visit T 1d, exchange.org/juice, box right now and complete that survey. It will take you 10 minutes to complete the survey, and that effort alone will help to move type one diabetes research forward. It will cost you nothing to help if you're looking for community around type one diabetes, check out the Juicebox podcast. Private, Facebook group Juicebox podcast, type one diabetes. But everybody is welcome. Type one, type two, gestational loved ones. It doesn't matter to me. I'm having an on body vibe alert. This episode of The Juicebox podcast is sponsored by ever since 365 the only one year where CGM, that's one insertion and one CGM a year, one CGM, one year, not every 10 or 14 days ever since cgm.com/juice box. This episode of The Juicebox podcast is sponsored by cozy Earth. Use the offer code Juicebox at checkout at cozy earth.com and you will save 40% off of your entire order. This episode of The Juicebox podcast is sponsored by the insulin pump that my daughter wears. Omnipod. Learn more and get started today with the Omnipod dash, or the Omnipod five at my link, omnipod.com/juice omnipod.com/juicebox,

Erika Forsyth, MFT, LMFT 2:24
Erica. Welcome back. Thank you. It's good to be back.

Scott Benner 2:28
Excellent. I love seeing you, and we're here to add another episode to your caregiver burnout series. This is going to be episode two. Yes, would you give me kind of an overview of what you think this one's about? Yeah,

Erika Forsyth, MFT, LMFT 2:41
yeah, so. And just as a quick summary that we're going through six themes, but we're going to be talking about them through the kind of the lens of a barrier to why it's so hard to take care of yourself as a caregiver. The first one we talked about was experiencing chronic sorrow. Today we're going to be talking about assuming responsibility for glucose highs and lows and again, these six themes or burdens or barriers have been identified through research that has all the research has ever been conducted on caregiver burden, caregivers to, you know, children with type one. So yes,

Scott Benner 3:20
can I just ask quickly, does this apply to other people, like, if I was caregiving some other illness? Would this apply? Or is it very specific to diabetes?

Erika Forsyth, MFT, LMFT 3:29
The themes that we are going through are specific to caregiver burden within diabetes, but caregiver burden can be applied to any caregiver, obviously taking care of and a loved one with a chronic illness or any, any illness really, but specifically we are going looking at through the lens of diabetes, I guess. Okay, all right, excellent, okay, so assuming responsibility for glucose highs and lows, this is obvious, because you as the caregiver are most likely making the decisions right of how much and when to dose and like we did in the first episode, where I'm going to read a quote from the research that will probably hopefully resonate with you. This is from a parent in the research. So this parent says it's kind of a guessing game. I know it's based on math, but diabetes doesn't always listen to math. No matter how hard we try, diabetes is going to sometimes just throw us a curve ball. I'm trying to do my best for my son's diabetes, but I can't. I can't keep it on track, which is very frustrating. It is scary to think I'm causing serious damage to my son's body, that's heavy. That's heavy, yeah, and the and this is going to be a little heavy in the beginning here, because it is hard and complicated, and the fear and the risk of of a low and a high is real. And so I I'm not minimizing the the true sense of responsibility around. Of that experience as the caregiver, as I already said, you know, you are the one, particularly if your child is younger, you are making the dosing decisions along with your Endo. But if you're, you know, taking on the independence and ownership of changing carb ratios, of changing basal rates, of changing anything in terms of the insulin dosing and treatment you are, you are carrying that sense of responsibility. So I just want to highlight and emphasize and validate that, yeah, absolutely okay.

Scott Benner 5:30
Yeah. We're not saying anything here like, Oh, don't worry about it. It's okay. We know. Just let

Erika Forsyth, MFT, LMFT 5:35
it go. It'll be fine, yeah. And this is, you know, this is as we talk about caregiver burden, the psychological and emotional burden experienced by caregivers is this anxiety, right? Relate caring and maintaining the glucose levels within this range, right? Whether it's a clinical range or an ideal range that feels good for you, you are living within that pressure to maintain that, and particularly in the beginning, this responsibility when you're discharged from the hospital, you're living with this I don't even understand what diabetes is, and now I have to try and keep them within this range, the sense of powerlessness and failure and fear and guilt associated with that, with that challenge, and that inability to maintain your child's glucose level within that recommended ideal range is so intense, right? As as you hear on the podcast, as I experience with my own clients, and also research affirms that there is hope in this journey, right, like the responsibility that you bear in the beginning is so intense and in seasons of change, right, like through growth periods, through changing technology, there is that intensified feeling of responsibility to learn how to manage and reduce the highs and lows. But research does affirm that over time, as you have more knowledge, more experience, more mastery, that the parents in all of this research feel more empowered and validate that they have a reduction in their perception of stress, and that all contributes To the reduction in mitigation of the caregiver burden.

Scott Benner 7:22
Does that only come from mastery? Like, getting better at diabetes, quote, unquote. Like, is that where that comes from? Or, do you, I mean, because I'm thinking that I've gained some perspective over time too, about, you know, well, if her blood sugar is 150 for a couple of hours, like, you know, it's not the end of the world kind of a

Erika Forsyth, MFT, LMFT 7:42
thing. Mastery and experience, as we say a lot, right in our community, that it is a time learned experience, that over time, you learn how your blood sugar, or how your child's blood sugar is going to respond to certain variables, right? So we always are going to have the unknown variables, but over time, you do learn. So it's it's kind of that combination of, you understand how the insulin is working, how the how your body and your child's body is working and responding to the insulin, and then you become more confident in that, in that journey.

Scott Benner 8:17
Does it happen for everybody? Or are there some people who get stuck on the this is killing them. Feeling that

Erika Forsyth, MFT, LMFT 8:24
is a good question. I think we can, we can transition into like, what? What can you do? Right? Because we're, we're talking about this as we all, you guys are living and know this burden and the responsibility and what happens if it's been weeks, months, years, and you're still living with this sense of like this parent says it is scary to think I'm causing serious damage to my son's body. And if that quote is resonating with you, that you are feeling that and thinking that on a consistent basis, I think we can, let's, let's transition into, what can you do with that if it isn't if you haven't developed that competence and confidence over time? So getting into the tool, right? So we're going to talk about the burden or the barrier to self care, and then the tool, and we're going to talk about some self talk tips today that we have sprinkled in across our various episodes, but I hopefully today will be, will be helpful to focus in on some self talk tools. Before we do that, I do want to to talk about the psychological implications of devices, not only for, obviously, the person wearing the devices, but as as we've discussed before, there's it's such a benefit and blessing and bonus to have all of this data in our hands all of the time, if your child is wearing a CGM, and it helps us, it informs our decisions. But also, there isn't a lot of research and interventions of like, what do you do if. Is causing so much anxiety for you as the caregiver, when we when we did not have CGM, were caregivers living with this intense anxiety? I don't know, maybe, but now you're in this, like, this constant feedback loop of information, and if you're living, if you're already kind of run in an anxious space. How is that impacting you? You know, it's different for everybody, but I think just to note that there are real psychological implications for these. This great all the technology and devices that we have, and we're trying to kind of catch up, right? And say, how do we live with all of this?

Scott Benner 10:41
Well, it can feel like, I've heard reported back from people, right? That the information, it feels valuable if you know what to do with it, and if you don't, it could just be a sign that says, hey, you screwed up. Hey, you screwed up. And, you know, and sometimes, every five minutes, it'll tell you that, that's right. It's funny, because some people can receive, you know, can receive information like that and just think, Oh, I did the wrong thing. I wonder what to do next. I'll try again. And some people, it hits them much deeper, and, I would say, freezes them to some degree, right? And then all they hear is, I'm doing it wrong. And the rest of it kind of melts away. Yes, yeah, that's yes, yes. This episode of The Juicebox podcast is sponsored by the ever since 365 get 365 days of comfortable wear without having to change a sensor. When you think of a continuous glucose monitor, you think of a CGM that lasts 10 or 14 days. But the Eversense 365 it lives up to its name, lasting 365 days. That's one year without having to change your CGM. With the ever since 365 you can count on comfort and consistency. 365 days a year, because the ever since, silicon based adhesive is designed for your skin to be gentle and to allow you to take the transmitter on and off, to enjoy your shower, a trip to the pool or an activity where you don't want your CGM on your body, if you're looking for comfort, accuracy, and a one year wear you are looking for ever since 365 go to ever sense. Cgm.com/juicebox to learn more. This episode of The Juicebox podcast is sponsored by cozy Earth, and right now I'm looking at cozy earth.com to see what's going on. I got, oh, look at this bamboo pajama set for ladies. The jogger pants for ladies looks like plush lounge socks. That's one of Oprah's Favorite Things. There's the bath collection. We love the waffle towels, but there's also premium plush bath towels. Everything that you see here can be had for 40% off with the offer code, juice box at checkout. Even the sheets. Now we use the bamboo sheets. You may choose different linens. I don't know what you're going to love when you get to cozy Earth, calm, but we sleep on bamboo sheets from cozy Earth. They are incredibly comfortable, and I bought them myself with my own money, using my own offer code. Juicebox at checkout, 40% off is what I saved you can as well at cozy earth.com,

Erika Forsyth, MFT, LMFT 13:25
and so, you know, starting with, yes, there is a real sense of responsibility in managing your child's blood sugars. That is true. And then I want to challenge what we're going to have the conversation about today is like, what's underneath that feeling of responsibility. So there's the reality, right? You don't want your child to go high and have long term complications. You don't want your child to go low for, you know, all of the obvious reasons, seizures, etc, and the fear around that. But what we're going to discuss is, you know, noticing the why, what is underneath the obvious of that responsibility, and so is it? Is it fear? Is it a fear that maybe you don't actually know? Are you, does your Do you? Does your child's pump have the right settings? Are you correcting, correcting at the appropriate rate? So do you need more education around it. Is it? Have you gone beyond that initial shock stage, or season of change stage, and you're still living in this fear that, gosh, no matter what we do, I'm not doing it right, and you're not quite sure what steps to take. So is the is fear driving and pushing that sense of responsibility? So exploring, yeah, what can you do with that fear? Is it? Is it more education around knowing how to help your child? I know these are like all easier said than done, but I think it is important to to name them. Is it guilt? Is guilt driving your decisions and actions? I know a lot of you. Parents I hear talk about whether they believe it or just feel it like what? How could I have prevented my child's diagnosis and then from that guilt, if you do feel like you could have, or wished or hoped you could have, are you now living in a state of I'm going to do everything I can to protect my child, and so I just need, I'm gonna, I feel so responsible for every action and reaction because of this guilt that's driving Yeah, your actions. Should I keep going or sorry? Do you want to? No,

Scott Benner 15:33
I think you should keep going. Honestly, I don't have a ton to say at the moment, and I just I appreciate how you're going through this. Okay?

Erika Forsyth, MFT, LMFT 15:40
Is it shame? And you know, Brene Brown, as we've talked shared before, she talks about the tapes that we have in our head that are just on replay. And are you living in a space where you're constantly hearing yourself say, as you already said, you know, I'm never good enough. I'm never gonna get this. And if that's kind of where you're living, what then you're gonna feel and take on that responsibility even more so, because either a you don't want it, you want to avoid feeling that shame. If it's like, oh, the blood sugar goes high, I'm never, I'm never gonna get this. I'm a terrible person or or the low, you know, and fearing something terrible and tragic happening to your child, which, again, is real, but is shame, and trying to either avoid that or is that driving that behavior? I think what we do get confused oftentimes when we talk about guilt versus shame, and guilt is can be kind of productive, right? It can say, Oh, oops, I made a mistake. I don't feel good about that, but I can change that, whereas shame is, I am the mistake. Yeah, and you know, the obvious example is, oh, we, we didn't Bolus, we didn't inject enough insulin, and now my, my child's 300 next time, we'll try giving it a little bit more or a little bit earlier, right? Versus we are never going to get this. I'm is this? This is and I'm causing serious damage to my child's body, and I'm a terrible parent, and stick and staying in that space is the shame. Do you think

Scott Benner 17:17
that having the autonomy to make changes to insulin alleviates that to some degree, because it occurs to me that if, if you're set up with poor settings, for example, or poor understanding of what you're doing from your doctor, you either see yourself as the agent of evil, right, like I'm doing the thing and it's wrong and it's my fault, or you see, people blame the doctor, well, the doctor is not Helping us. It's their fault. It's not my fault. And, you know, like, so you either put that shame on yourself or you blame, blame. Yeah, it's shame or blame, right? Like, I like that. I can't like this. Just it's, every time we get to the end, I'm like, oh, that's exactly what she said, But, but you seriously, like, when you look into the community, that's what you see, either people blaming themselves or blaming someone else, one of the other. So I'm either ashamed I can't figure this out, or I'm blaming this person. Neither of those things get you to the answer, because if the truth is the doctor's not helping you, you can blame yourself or blame them all you want. It's not going to change, as long as that's your physician and vice versa. If the doctor's giving you something that's actually actionable, that you just don't know how to put into play. The doctor is not going to change what they're telling you. This is the thing they know how to say so you get that's where people get stuck. And it occurs to me that I see people very frequently talk about I struggled for years until I realized I could change my basal if I wanted to. Like that. That one simple step seems to help people immensely. My daughter is 20 years old. I can't even believe it. She was diagnosed with type one diabetes when she was two, and she put her first insulin pump on when she was four. That insulin pump was an Omnipod, and it's been an Omnipod every day since then. That's 16 straight years of wearing Omnipod, it's been a friend to us, and I believe it could be a friend to you. Omnipod.com/juicebox, whether you get the Omnipod dash or the automation that's available with the Omnipod five, you are going to enjoy tubeless insulin pumping. You're going to be able to jump into a shower or a pool or a bathtub without taking off your pump. That's right, you will not have to disconnect to bathe with an Omnipod. You also won't have to disconnect to play a sport or to do anything where a regular tube pump has to come off. Arden has been wearing an Omnipod for 16 years. She knows other people that wear different pumps, and she has never once asked the question, should I be trying a different pump? Never once, omnipod.com/juicebox, get a pump that you'll be happy with forever?

Erika Forsyth, MFT, LMFT 19:52
Yes, and there's, and it's whether it's a light bulb moment or a sense of, okay, I can't. Kind of agency or ownership over this in a safe way. You can't force that right. That is a journey that people are on independently, but that does feeling empowered to do that. You know, where I that comes from somewhere, yeah, to feel like, okay, I can do this. I can I can make this change, and we can do this slowly and safely or however. You know it feels appropriate.

Scott Benner 20:24
Can I ask a question when I hear people say, I just got done interviewing somebody an hour ago and said something that people say constantly, right? Like I wasn't taking good care of myself as an adult with type one. Then we had a baby, and I looked at the baby and I thought, I need to be around for the baby. And that seems very real to me, that people are able to do things make leaps for other people easier than they can for themselves. But then for the people who get stuck in this shame thing, as parents, as caregivers, that same connection seems to fight against them instead of be on their side. Does that make sense? You know what I'm saying? Like a

Erika Forsyth, MFT, LMFT 21:07
caregiver. Say that, say that last piece again. People,

Scott Benner 21:10
over and over again, will tell me that I didn't do a good job for a long time, but then I realized I could do it for someone else, because I want to get married, because I want to have a kid like I can. I can find the reason to get in there. But then you put a caregiver in that situation, they already have that reason, and yet that doesn't propel them. So what's the difference? Is it time like experience is that, like does the adult have 30 years of seeing it and ignoring it, and then they decide not to ignore it, whereas the caregiver doesn't see it, they're not ignoring anything. They just can't figure it out, but they still have the stress that the draw to do something for someone else. I hope that made sense,

Erika Forsyth, MFT, LMFT 21:47
so you're considering or wanting to explore. If the caregiver already has that motivation, like their child, they want to help their child stay healthy. I think they already have that, yeah, and so you're wondering if shame keeps them stuck. I'm

Scott Benner 22:06
almost wondering if a lack of the information. I mean, obviously that's the thing that's stopping them from making a better decision, right? Like, and, you know, but is, I'm saying it's interesting that the same lever that propels one person out of it is the lever that almost tortures the other person.

Erika Forsyth, MFT, LMFT 22:26
That makes sense, yes, yes, okay, okay, I hear that, okay. I don't

Scott Benner 22:29
know what to do with that. It just, it's very obvious as I'm watching like I hear people talk about this all the time. And I realized I have a kid now, and I want to be around for that kid, so I did this, and the next person is like, I care about this kid so much, and all I want to do is help them be healthy. And that's why I feel terrible, because I don't have so so the common denominator is, is information, good information,

Erika Forsyth, MFT, LMFT 22:55
good information, and also understanding which we're going to get into next is, what is that? What is that thought process? What thoughts are driving your feelings and behaviors? Tell me, so we you okay. So you know, why? Why is it important to understand the thoughts and feelings what you know, it's we just went over. What is driving that responsibility? Is it? Fear? Is it guilt? Is it shame? Is it, you know, lack of education, is it? Are you being Are you motivated by comparison also? Are you feeling like I have to keep my child's a 1c in this range and their blood sugar in this range, because that's what I see on Facebook, whatever, right? Like, what is driving that? But if we again, it might feel like a luxury to pause and be aware of your thoughts. It's important because we can't change our behaviors or our actions unless we are attuned and understand what's driving them and our thoughts. In cognitive behavioral therapy, if you were to look up the CBT triangle, and a lot of you are already well informed in this, but the CBT triangle is basically a triangle with arrows pointing in both directions, and basically it's describing how our thoughts impact and affect our feelings, or our emotions, which impact or affect our behaviors or actions. So we'll say, and oftentimes our thoughts are the drivers of how we feel and what we do. But it can go any which way, right? So you can open the door for somebody and and feel good about yourself and then have the thought, Oh, that was, that was kind of me. I'm a kind person. You can so that's right, that the action is driving that feeling or thought. You could think, I'm never good enough, and always feel like you're failing, and then your action is probably to. Avoid or not want to look or explore or understand what's happening, because it's all painful. Does that make sense? It does so again, I know it feels like, oh, just pay attention to what you're thinking. It's just that easy. I know it's a hard thing to do and it takes time and understanding. But if you are operating from this orientation that our thoughts do impact how we feel and what we do in any which order, also we can't change unless we have some awareness and understanding of what's driving that. So if, if you are living in a shame based mindset, and perhaps you grew up in that way that shame is going to make you change. Shame keeps us trapped and isolated and stuck. It does not lean itself into into being vulnerable and motivated for change. And so I want to kind of maybe try and go back to your question of like, what's that lever of change for the caregiver, if you're stuck and feeling like you're never gonna get it right, or that you are just having to constantly that this is that overwhelming feeling of responsibility for your child's highs and lows, and you're feeling like you're never gonna get it that There is. It's not an easy answer, right? But it is spending time understanding, noticing that. Why? Like, what is driving that constant thought in Should I keep going, Ken,

Scott Benner 26:34
but I keep thinking, don't want to, I don't want to waylay you, because I feel like I'm going to say something is going to take us down a road. It's okay. I keep thinking about like people who listen, know, I ask almost every person I interview, like, are there other auto immune issues in your family? What else is going on? Right? And anxiety, ADHD, that kind of stuff pops up a lot, depression, that kind of thing. So if auto immune is a trigger for anxiety. And trying to help somebody who has type one diabetes is a trigger for a caregiver. It's very possible that when we look back at people, we go, Oh, my God. Some people just like, handle this, and some people just can't, like, blah, blah, and we talk about it like personality or, you know, stick to itiveness. We've gone through the fallacy that some people are more resilient than others, like all this stuff I'm saying. What if there's auto immune through your family, you're not aware of it, and your auto immune is low level. You don't have anything diagnosable, but you are an anxious person, and so now you have this thing. Then your kid gets diagnosed, it gets ramped up, and then you get clicked into a loop that you have no there'll be no ability to break free of because it's a physical you're having a physical implication, and a psychological match is being thrown on it to some degree. So do you know what I mean? Like, so you have the external trigger, you have physical symptoms that could be coming from an autoimmune issue. And then here we go, like, it's and on top of all that, by the way, stress can be a trigger for anxiety, hormone imbalance, which we see a lot with people with autoimmune stuff, can be a trigger even, like, you know, I know there's not a ton of like, not a ton of like, research from the NIH about it, but like, you know, there's this gut brain access, access. So if you are having an autoimmune issue, your guts unbalanced. This could all, like, be impacting it. Then you're trying to cope with a chronic illness. It flares up your anxiety, the autoimmune issue keeps it going, and in the end, all you're doing is sitting in bed going, Why am I killing this kid? You know? And so, I mean, I like talking about it so that people can understand bigger picture, but I don't want them to like therapy would be a great idea. I'm not saying it wouldn't be. But I also think you should find out if you're having an auto immune response as well, because it could be. I mean, listen, I'm not a doctor, Eric, I think we've gone over that a number of times, but I don't know how many people I got to talk to who have auto immune in their life, who are also, like, closely related to an anxious person, or have anxiety themselves. So anyway, I just, I got to get that out, or I'm going to feel like it's stuck in my head the whole time. And I didn't mean,

Erika Forsyth, MFT, LMFT 29:24
good, yeah, that's a that is an excellent point, because then it's like, well, then you do, right? Like, that's so, yeah, complicated. And then you're in it. You're in facing a chronic illness where, you know what is anxiety, feeling like you're out of control and doing anything you can in your mind to get that semblance and sense of control right. And when you are trying to manage your child's diabetes and you're trying to be quote, in good control, which I know we steer away from that language, but that's what you're trying to do. But,

Scott Benner 29:56
and we steer away from that language because some people have such. Hard intersection with it. But for the people who aren't anxious, they hear that, and they go, okay, marching orders, I know what to do. Bang, bang. And then they go, get it done. Like, so if it's if it's a physical limitation, and then you get thrown into it, but you feel like it's just a personal failure. You don't even it would be like, if you felt like having cancer was a personal failure, and somehow no one knew to tell you, No, that's not true. That's how this all feels to me. If that makes sense, I'm saying if that makes sense too much today, but

Erika Forsyth, MFT, LMFT 30:34
because this is it's hard. It's hard because there's no, we can't say, go do this and this, it's going to fix it. This is a conversation of bringing awareness to a really challenging issue of a caregiver trying to keep your child in good health. But are you noticing that overwhelming sense of responsibility that may be more than you can handle? Yeah, and manage that. It's not sustainable

Scott Benner 30:59
if you're an anxious person who didn't get good direction from a doctor, and you're floundering, and you have an autoimmune issue. On top of all that, I might as well take somebody four feet tall and tell them to go out there and block shack. You know what I mean? Like, it's just you. I don't know how you're supposed to accomplish that. You don't have any of the tools, and you have a number of things going against you while you're doing it.

Speaker 1 31:22
That's all, yes, yeah, that's, that's all.

Scott Benner 31:26
You always make me feel like, hopeful and beaten at the same time. I'm like, Look, we're shining a light on this thing that they can't do anything about, like, but you can do something about it, right? You can't.

Erika Forsyth, MFT, LMFT 31:38
You can't. So the as we're talking, you know, my hope is that you are able to just, even if it's a few minutes during this episode, kind of checking in with yourself. You know, we all again, going from from a cognitive behavioral therapy orientation. We all have these core beliefs that we're living from and out of that often are originated and stemmed from our childhood. And core beliefs lead to automatic thoughts, and those can be positive, they can be negative. You can have a blend, right? So your a core belief could be I am valued or valuable, and and your automatic thoughts stem from that in the name, since we're talking a lot about shame today, if you have a core belief that you're never good enough or not good enough, then your automatic thought would be obviously more negative when You see your child's blood sugar going up that I am I'm failing. I'm never going to get this. I'm causing serious damage, and that's coming from your core belief system. And it's hard and takes time to understand that. But I think as human beings, we're going to have those moments, right? Like this is normal journey of growth and learning and disappointment and grief and loss, all the things that we've talked about in all of our previous episodes. But we're wanting to encourage to note just just like we want to notice our patterns and our blood sugars, notice the patterns of our thinking. Again, that takes time and energy, which I know is hard to do, but it is doing Yes, yes, yes. If

Scott Benner 33:25
you, if you have the time to so it is like diabetes, if you have the time to put the focus on it, and you get good information, like you're sharing here, you maybe can step back, see the bigger picture, and help yourself through it.

Erika Forsyth, MFT, LMFT 33:36
Yes. I mean, yes. And the challenge is, obviously we don't have our clarity reports, or any reports to look at our trends. Right to say, Oh, I'm going high after every I'm going, Yeah, I'm going anxious every morning. So yes, it takes another step of analysis and pause. But you are, you are worth that. You know you are worth that as a human being, as the caregiver, and you are valuable,

Scott Benner 34:04
right? And for the people you're trying to help too, right? It's worth it. It's worth the effort. Yes,

Erika Forsyth, MFT, LMFT 34:09
yes.

Scott Benner 34:10
So what are the last

Erika Forsyth, MFT, LMFT 34:11
last tool? Last Tool here, in terms of, you know, the self we're kind of self talk tips. To get to that place, you have to have this awareness of what are you telling yourself. And so when you notice, as I think I've talked about this before here, like noticing that that mean girl voice or that mean guy voice in your head, that you have to first listen, understand it, and then you notice it when it happens. And for some people, they can quickly say, oh, yeah, I hear that all day long. Or oh, I only hear that when this happens. And naming it. This is another CBT tool, name it, call it Teddy, oh, you

Scott Benner 34:53
can give the voice a name, yes.

Erika Forsyth, MFT, LMFT 34:58
Okay, good. Do you. To share it? No, I

Scott Benner 35:00
can't, because that person is listening and I hate them. Now, by the way, 15 different crazy people think I just thought of their name. It's not, you go ahead,

Erika Forsyth, MFT, LMFT 35:12
you know, Brene Brown calls it the Kerr gremlins. Sometimes people call it a color monster, etc. And naming it, it sounds silly, but in that process, you are telling your mind that you are separate from those thoughts, like when we hear when we feel like I'm never good enough, I'm I'm never going to figure this out. I'm a terrible person. That's when in Acceptance and Commitment Therapy, they talk about that's thought fusion, like that thought is a part of you. And what we want to do is do like this, thought diffusion. And so by naming it, you're telling your brain, oh, this is, this is not me. This is, this is my old past. This is my history. This is something not this is not nice, right? So you're naming it, you're acknowledging it. Okay, monster, I know you're trying to tell me that I'm not good enough, but I in cognitive behavioral therapy, they you can kind of tell it to be quiet, to tell it to shut up. You can tell it to I'm turning the volume down. Some people don't feel comfortable with that, because it feels more like combative and that creates more conflict in your mind, in Acceptance and Commitment Therapy, you can name it, acknowledge it, and say, okay, monster, I see you, and I know you're trying to tell me I'm not good enough, but that actually you're kind of just you're sitting with it and it's there, and you're separating yourself from it, which, by the way, also interrupts the pattern, right? Like when you're you're spinning and spiraling. It feels like you can't control your thoughts. So with this tool, by naming it, talking to it, acknowledging it, you're interrupting that thought pattern, and then you're saying, Okay, actually the truth is and replace it with a truth that feels it might feel not 100% accurate in the moment, but that's where you want to get to. Like I'm doing the best I can, I'm learning. I'm taking it one day at a time, whatever truth statement that feels easy enough to remember and say, because you're wanting to interrupt that pattern of your failure, you're never going to get it. You're, you're, you're not good enough.

Scott Benner 37:21
I think you just made me realize that Eminem went to therapy. Because, you know that song, the monster with Rihanna. I'm friends with the monster that's under my bed. Get along with the voices inside of my I'm like, Oh, I think he might have went to therapy and then wrote

Erika Forsyth, MFT, LMFT 37:33
that. Yeah, you might have. That was good. That was our podcast, not

Scott Benner 37:37
big enough to reach Eminem, but, but I definitely like, that's what I thought. Like, oh, he sounds in touch with that idea that you just said, Okay, maybe you guys could just listen to that song and skip therapy. Yeah, I don't think it works that way. Can you imagine? Or could be out of a job. Oh, we've just send songs to people, if people have been in therapy already.

Erika Forsyth, MFT, LMFT 37:59
That is good. I've never thought about that song, but yes, that does feel like that.

Scott Benner 38:03
It just felt like that's what you were describing, is that somebody who, you know, found a way to separate the voice from themselves. That's all anyway, I could be completely wrong. Somebody's gonna write and be like, that's about heroin. And

Erika Forsyth, MFT, LMFT 38:19
I'll be like, oh never. Gosh, yes. I mean this again. These are, I know it's easy, and we're kind of laughing that this is, it is a it is a process and a journey of recognizing what tapes are running in your head and how much is that contributing to, in this particular theme, the responsibility of the highs and lows of your child's blood sugar? Yeah,

Scott Benner 38:42
I would like to thank you for believing in how I present stuff on the podcast enough to come on and talk about super serious stuff while I say dumb in between, because, because I do really think that this is another one of these things that, if it wasn't Amy, you know, you can think about any number ways you want, like, presented in a relatable way, whatever. I just don't think it's something people would hammer through. You know what I mean? Like, if you just came on here and were like, and you read that stuff out loud, people would be like, oh, oh, geez. And not that it wouldn't be incredibly valuable for them. I just think people have trouble, like, you know, sitting and hearing that stuff and taking it in that way. So I just, and, plus, you're teaching me as I'm talking, like, you know, as you're speaking, I'm like, Oh, that makes sense. This makes sense. I even saw at one point, like, we did that, 54321, grounding technique. And I thought, Oh, that would work here. Yes. Like, and you talked a little bit about, Gosh, how did you put it, like, core beliefs, and then, and I thought of that from like, other episodes, and I was like, I'm gonna be by the time Eric and I get done, I'm gonna be healthy, and hopefully other people listening could be as well. You know, yes, it's tough to think that 38 year old, you could be feeling like I can't do this because of something that happened an eight year old, you you know. But if. Very likely that those that self talk you have is rooted in something you don't even remember anymore. You know, yes, well, that you don't consciously remember anymore.

Erika Forsyth, MFT, LMFT 40:09
Yes, it is. It is powerful to to think that after you

Scott Benner 40:14
get done talking and I realize I'm following you, I'm proud of myself again, but, but I'm also proud of you because of the way you the way you lay it out. It just you're explaining and then giving me time to go through it, and I'm hoping that's translating the people listening, which I think it is. I just don't think it's a thing. Like, if I was actually in therapy right now, I'd be so busy spilling my guts. I don't know if I'd be able to, like, hear what you were saying. Like, I like this format for that,

Erika Forsyth, MFT, LMFT 40:45
you know, yes, yeah, yes. Well, it's, it's a journey, but thank you. No, it's

Scott Benner 40:50
a journey. Yeah, it's, certainly is. I talked to a guy the other day about, like, he's like, 70, talking about his children in their 30s, and they're coming back and asking questions still. And I thought that's always gonna happen. I thought there was a break coming at some point. There's not. And then it really made me think, like, you know, otherwise, just like well adjusted people and doing okay in the world and everything. And if you looked at them from a distance, you'd say, these people got it together, you know, but they still need help. So there's nothing wrong with asking for help, I guess is what I'm getting. That's right, yeah, that's right. Are we done? Did we do it? We're

Erika Forsyth, MFT, LMFT 41:25
done. We're paused. Yes, we're done. For episode two, all right, come back

Scott Benner 41:29
for episode three. How many episodes are there going to be six? Six.

When this started, Erica said, I don't know. We could probably do this in like three episodes. And I was like, not. If I start talking in the middle, we're not going to be able to. I appreciate this very much. Thank you.

Erika Forsyth, MFT, LMFT 41:42
Thank you.

Scott Benner 41:48
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#1356 Land of Many Colors

Scott Benner

Akshara uses a GLP pill and has a crazy T1 diagnosis story.

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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
Hello friends, and welcome back to the Juicebox podcast.

My guest today has had diabetes type one for three years. She's using robust, which is a GLP and a pill, and she talks a lot about food and her diagnosis in this episode. Oh, and they thought she didn't. Oh, geez, that's interesting. I'm sorry. I'm looking at my own notes. They didn't think she was going to live at diagnosis, and they actually sent her family out into the community to look for medication. This is a story that's really different, interesting. You should check it out. Please don't forget that nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com when you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. Ag one.com/juice, box.

This episode of The Juicebox podcast is sponsored by the continuous glucose monitor that my daughter wears the Dexcom. G7 dexcom.com/juice box. Get started today using this link, and you'll not only be doing something great for yourself, you'll be supporting the Juicebox podcast. US med is sponsoring this episode of The Juicebox podcast, and we've been getting our diabetes supplies from us med for years. You can as well us med.com/juice box, or call 888-721-1514, use the link or the number. Get your free benefits. Check and get started today with us. Med. This show is sponsored today by the glucagon that my daughter carries, gvoke hypo pen. Find out more at gvoke glucagon, com, forward slash Juicebox.

Akshira 2:23
Uh, hi. My name is akshira. I am 29 years old, and I've been diagnosed with type one for the last three years. So I recently diagnosed. I'm learning new things every day. And I just wanted to come on and say hi, and wanted to share my story. Oh,

Scott Benner 2:39
I'm great. I'm I'm excited to have you. Thank you. So three, three years with diabetes. How old are you?

Akshira 2:44
I'm 2929

Scott Benner 2:47
and you, you just said I'm still learning. That's interesting. So has it been a consistent learning process over three years, or have you suddenly found different information and you're absorbing it now?

Akshira 2:59
Uh, no, I think it's been consistent learning through these three years also, because when I got diagnosed, I was, I think there were lot of things that was happening at that time in my life, just, you know, when I got diagnosed, and I think it's just been the last year that I've really focused on, you know, my diabetes, and I've come to accept the fact that I have, I live with it. I think the first two years, there was a lot of denial, and, you know, so that's I've been learning how to control, you know, my sugar levels, and, you know, just deal with it more consistently in the last year. What is denial look like, just not accepting the fact that I have diabetes, like, just thinking that's just something that's momentary, or it's just for a short period of time, and maybe it'll go away, you know? And, yeah,

Scott Benner 3:52
so while you're in that feeling you're not putting your full effort into it, because, you know what I mean, like, not I understand the Lego hopefully this will, like, maybe they're wrong, maybe it'll go away, like, that kind of thing. I understand all that. But what happens to you while you're doing that? Are you just sort of half heartedly taking care of it, or are you taking care of it very earnestly, and then suddenly you accept the fact that it's not going away?

Akshira 4:15
No, I yeah, I think it's the latter. It's like, I'm half heartedly taking care of it, like, you know, it's not that I would ignore my my numbers. I would not take the insulin, but it's more. I mean, I would just do the basic of what is required, right? Like, if I maybe I'll just take, like, five, six units, because I know that's the minimum that I would need, you know, to get through a meal or whatever, and I know that I have to take my basal at a certain time of day, and I would do that. But I was not correcting. I was not, you know, trying to understand why certain foods impacted my sugar levels the way it did. So I was just trying to, you know, just keep. My head up, but

Scott Benner 5:01
you weren't learning or digging deeper or anything like

Akshira 5:04
that. No, nothing.

Scott Benner 5:06
How did you get past the idea that hopefully this will just go away? Was there just time that did it? Was it a conversation you had a moment?

Akshira 5:16
It was time, definitely. And so I got diagnosed during COVID. So it was in I when I signed from India. So we had a second wave of COVID during 2021, I remember that, yeah, so where it was, like things were really intense. And, you know, there was, there was a scarcity of beds in hospitals, and, you know, it was a really difficult time getting that, you know, getting admitted. And that's when I got diagnosed. I was in the I got COVID, and then in DK, and that's how I came to, I came to this new chapter of my life. So the first two years, I was dealing with a lot of after effects of COVID, like, you know, still trying to come back to my strong like, like my old self, like, gaining strength. And, you know, I had lost my voice. I was doing vocal cord therapy and all of that. Lot a lot of other stuff was happening.

Scott Benner 6:08
Yeah, did you have or do you have long COVID symptoms?

Akshira 6:12
I don't have any COVID symptoms now, right? But I think for for from the year that I would diagnose, I think for a year from then I had a lot of COVID symptoms. So, yeah, so I think the I think after that, like once you get back to routine, and get back to your life, and, you know, start doing everyday things, and, you know, I then I had, like, a new doctor, like a, like an endocrinologist, and then that's when I really learned what this means and why I need to take care of it, and I was, you know, paying more attention. So I think it was just time that kind of did it, and that's, that's how I came to term with the fact that, you know, it's, it's more real, and it's not gonna go away.

Scott Benner 6:54
Not gonna go away. Are you in a big city in India? Or where are you?

Akshira 6:57
Yes, I am in a big city. Yeah. What was that

Scott Benner 7:01
intake like through the hospital? Did they give you any technology? Is the technology wildly different there than it is here, that kind of stuff. If you take insulin or so Fauci, you are at risk for your blood sugar going too low. You need a safety net when it matters most, be ready with G VO, hypo pin. My daughter carries gevoc hypopne everywhere she goes, because it's a ready to use rescue pen for treating very low blood sugar in people with diabetes ages two and above that. I trust low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily, gevoc hypopne can be administered in two simple steps, even by yourself in certain situations. Show those around you where you store GEVO kypo pen and how to use it. They need to know how to use jivo kypo pen before an emergency situation happens. Learn more about why GEVO kypo Pen is in Arden's diabetes toolkit at gvoke, glucagon.com/juicebox, gvoke shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma, or if you have a tumor in your pancreas called an insulin OMA, visit gvoke. Glucagon.com/risk, for safety information. Today's episode of the podcast is sponsored by Dexcom, and I'd like to take this opportunity to tell you a little bit about the continuous glucose monitor that my daughter wears, the Dexcom g7 the Dexcom g7 is small, it is accurate, and it is easy to use and wear. Arden has been wearing a Dexcom g7 since almost day one of when they came out, and she's having a fantastic experience with it. We love the g6 but man, is the g7 small, the profile so much closer to your body, the weight, you can't really feel it. And that's coming from me, and I've worn one I've worn a g6 I've worn a g7 I found both of the experiences to be lovely, but my gosh, is that g7 tiny? And the accuracy has been fantastic. Arden's a one. Cs are right where we expect them to be, and we actually use the Dexcom clarity app to keep track of those things. That app is built right in to Arden's Dexcom g7 app on her iPhone. Oh, did you not know about that? You can use an iPhone or an Android device to see your Dexcom data. If you have a compatible phone, your Dexcom goes right to the Dexcom app. You don't have to carry the receiver, but if you don't want to use the phone, that's fine use the Dexcom receiver. It's up to you. Choice is yours with Dexcom, dexcom.com/juicebox, dexcom.com/juicebox,

Akshira 9:42
I don't remember much from when I was actually diagnosed, like, I don't have any memory of of those, of that, of those few days, but I was on MDI. They gave me like a sliding scale, like I need to take some eight units during breakfast. I. And some six units during lunch, sorry, during dinner. And I need to take some 12 units, which was my basal, so that that's what I was doing for, I think, a year. And then some friend of mine told me to this other doctor was, like, really popular in the city that I live in, and he and they have, like, this really big diabetes hospital, and then, so when I went there, that's when, this was just last year. So when I went there, that's when, you know, my I was taught a carb counting. I was taught what an insulin to carb ratio is. I was given a CGM. And I think since the last about eight, nine months, I've been on a pump as well. Okay, which pump I use? The ipso med pump, Ipsum,

Scott Benner 10:49
okay, yeah, so right now, Ipsum, Ed, pump, yeah, CGM,

Akshira 10:55
freestyle, libre, libre, libre one. That's what you get here in India.

Scott Benner 11:01
They're all, yeah, there's no other one available right now.

Akshira 11:04
No, no.

Scott Benner 11:05
Does that come through a healthcare system?

Akshira 11:08
I know you buy it with cash. Cash, okay, yeah.

Scott Benner 11:11
Can you tell me? Would you mind tell me what it costs and how that translates to American money.

Akshira 11:15
It costs around 5000 rupees, which is 72 which is about $70 for one, for one, for one sensor, which would last you 14 days.

Scott Benner 11:28
What is that like, based on your income? Is that? Is that a heavy lift for you, though? Yeah,

Akshira 11:34
so, so if you do, if you do, multiplied by two, right? Like you would assume, in a month, I would need about two sensors. So that's like 10,000 rupees, which is a good portion of money for someone who earns, you know, like a who lives in a middle class lifestyle, or who has a nine to five job, that would that's, that's a good chunk of money,

Scott Benner 11:56
hold that amount up to me against, like, rent or food or something like that. Like, what? Yeah,

Akshira 12:03
okay, so in the city that I live, which is like a tier two city or almost a tier one city, doesn't matter, so it would be 1/3 of your of the rent that I pay in a month, and it would be like almost a month's worth groceries. And it could be like a month's worth of gas or pet like in India, we we say petrol, right? So it'll be a month's worth of petrol, one,

Scott Benner 12:24
libre sensor, uh, truly, two is the equivalent to a month's worth of of gas, or a third of your a third of your more of your rent.

Speaker 1 12:34
Yep. Wow, that's crazy, yeah. Oh,

Scott Benner 12:38
so that's like, so if you this is crazy in America, but you could pay $2,000 for an apartment American, no problem in some places. And that's like saying that the two libre sensors is like 800 bucks. Yeah, that's great. That's nuts. Okay, wow, all right, but you're doing it because, why? Because you like not having money or because you find it that necessary?

Akshira 13:05
No, obviously I like having money inspires me to work harder so that I have more money, so that I can afford the diabetes technology. And, yeah, of course the technology is important. And I think, yeah, I think I'm a I'm a lazy person, I wouldn't do too many, you know, finger sticks if I'm given the choice. So I think having the CGM makes it easier. You

Scott Benner 13:28
think not wanting to do finger sticks is lazy? I don't know. I don't think that's lazy. I think that might be smart, you know, but, but this is crazy, so, but are you, I'm sorry. Are you married? Yes, I am You are okay. And do you have kids? No, are you planning on, planning on kids? No, okay. How about in your family? Is there any other type one in your family?

Akshira 13:53
No, there's no type one in my family, but there are couple of aunts who have hypothyroidism, yeah, but there's no, no one else that I know of who has any other auto immune, like celiac or type one or anything else.

Scott Benner 14:08
Getting away from auto immune for a second. Do you have much type two in your family?

Akshira 14:12
Yeah, yeah, like some of my grandfather, I mean India. I mean a lot of people in India have type two diabetes because of our eating habits in our lifestyle and things like that. So yeah, not immediate family members, but yeah, extended family members do have step two diabetes. Yeah.

Scott Benner 14:28
And that brings up a good question, like, well, first of all, did you adjust your eating? And if you didn't, would you even be able to living in India to get away from stuff like that?

Akshira 14:38
Definitely, yes, you can adjust your eating. You do get a lot of so you do get a lot of variety of foods, like, you know, which are not very carb heavy. It's just that the most affordable options tend to be white rice and, you know, some vegetables which are more heavy in carbs than other nutrients. But it's. Definitely doable. I go through phases where I'm suddenly like, Okay, I'm going to do low carb and I'm not going to eat any carb, and I do that for couple of months and and up sometime and just totally give up. And I'm like, Okay, I just want to eat my traditional food, which is very carb heavy. I would like to believe that I that I have a very balanced way when it comes to food, I think it tends to lean a little more on the carb heavy side.

Scott Benner 15:26
So let me ask you this, are you a vegetarian?

Akshira 15:30
Yes, I am a vegetarian.

Scott Benner 15:32
And so that's that makes it harder, right? Because you all the meat, you know, that would have very low or no carbs, and it isn't available to you, okay, yeah, yeah. And so you have to go maybe more towards vegetables if you're going to do that, I say, yeah, yeah. Tell people what is a classic kind of week of Indian eating look like, like in a home, like, you know what I mean? Like, what are some staple foods?

Akshira 15:58
So a lot of our food are very lentil based. So we have something called dal, which is like a lentil curry, basically. So, so a lot of your food types, like, or so, a lot of it is either like a roti or a chapati, which is like, which is like kind of a bread that's made with a wheat, whole week. Okay, so you have that with some, you know, some curry, which would either be like a lentil based curry, or it would be some vegetable based curry, or you would have that curry with rice, with white rice, primarily. So I am traditionally from the southern part of India, where rice is more prominent, white rice is more prominent, and we have that with different kind of lentil based curries and with one vegetable, one or two vegetables, right? So it would be like a fermentation combination, where your white rice or your whole wheat chapatis or rotis or, you know, non bread, as they say, you know, those kind of things with different curries and different.

Scott Benner 17:03
I was at a friend's house recently. It kind of like, we just dropped in, and she's like, you know, we have, I don't know what it was called, but she's like, here you want some food. And it's like, kind of like it felt like a flower pocket or dough, and inside of it was, like, rice and peas and some other stuff. And it was, I think it was fried maybe. And, yeah, was

Akshira 17:22
it like a samosa? Did she say, I

Scott Benner 17:24
don't remember what she said it was. I remember, like, eating it and thinking, like, wow, this is, this is a lot of carbs. And, like, just the thing that was just kind of sitting around to snack on or grab, you know, yeah,

Akshira 17:33
yeah, yeah. Did you go during tea time, during the afternoon time? No,

Scott Benner 17:37
it was in the evening. We were stopping by to my son could meet with her husband a little bit about something, okay? Yeah. She's like, Oh, look what we have. And I was like, Oh, great. And I was like, I don't know what this is, yeah,

Akshira 17:47
no. So a lot of our a lot of our snack time foods are all fried foods, which is more easily accessible. So you are like, like, the one that you said that's, it's usually, I think you're referring to a samosa, which has, like a potatoes and peas inside, like a pastry, kind of affiliate, like an outer shell. That's like deep fried. Yes, that's like a very common snack time, tea time, kind of a food that you have with Chai.

Scott Benner 18:13
How do you how do you Bolus for that? Y'all

Akshira 18:16
get as good as mine.

Scott Benner 18:20
What have you been able to accomplish with your your outcomes and the food choices that you have? Like, where's your a 1c at? And what are your goals?

Akshira 18:28
My a 1c is definitely not the best. The most recent one that I had was a 7.2 and that's the lowest a 1c that I've had in the last three years that I've that I've been diagnosed, okay, so, yeah, I think I'm really moving towards, you know, like, I think for the for this year, my goal is to be in the low sixes, and then I would try, I would want to be closer to the five as time goes on. But, yeah, so I try to eat what is, what is more easily. Like, it's something that I can make more easily, so that, you know, it's, if it's too complicated, I'm not going to make it, and then I'm not going to eat it. So I try to balance that. And I've also started the, I've recently started taking ribs, which is like a pill. Oh, I know, sure. GLP, medication. Yeah. So that has helped a lot in terms of my insulin sensitivity and just the amount of insulin that I'm using on on a daily basis. It's just been a month since I've been on that medication, but that's helped a lot. Yeah, so tell me about

Scott Benner 19:35
that a little bit. Is that a pill, right? Is it daily? Yeah, yeah.

Akshira 19:40
It's, it's once it's, it's something that you take every day, okay, in the first thing in the morning, and you're not supposed to eat or drink anything half an hour after your at least for half an hour after you've taken that the pill. And then you go, go on about your day as usual.

Scott Benner 19:54
Are you on a seven or a 14 milligram pill?

Akshira 19:57
So I'm currently on a seven. I. G milligram pill. I started off with three mg, but now I'm on 17. Sorry, seven mg. But from next week, I will move to 14 mg.

Scott Benner 20:08
They'll move you up gastro stomach. Any issues from it? What did you get from it?

Akshira 20:13
Yeah, I think the first few weeks was a little difficult. I mean, I've heard some of your stories where you said that you feel the foot sits in your feels like it's up here in your chest, yeah. So, I mean, I did have those sensations in the beginning, but I think otherwise, it's been okay. There was just one time where I had, like, instant noodles and I couldn't keep it in. I threw up, and I've never I've not touched instant noodles since then, like, it haunts me now to even think about it, just like

Scott Benner 20:44
those, like pre made noodles, you put hot water in them, and, yeah, that you couldn't handle, but yeah, had you not thrown up? You think you could do it now that you've been on it longer? I

Akshira 20:53
don't want to think that. And I think more importantly, I don't feel that. I don't crave for for that kind of food, like, I don't feel like eating it, you know? I mean, I could take maybe two bites and I'm done, like, I don't want to eat more of that. So it's really working. It's working for you? Yeah? Yes, yes. I'm also some Sorry, I just want to say one thing, yeah. I'm also somebody who's always thinking about food, like, I'd wake up in the morning, think What's for breakfast? And, you know, I would when I'm eating breakfast, I think, what do I have for lunch? Like, that's how my brain works. And I can tell you, I've not thought about food in the last one month at all, and I've gone days having just one meal, and I'm totally okay. Have you lost weight? I've not lost weight. Maybe, like, like, one kg, okay, here and there, but it's helped a lot with just how much my insulin needs have gone down. It's gone yeah, by 25, 30% like, my basal has gone down like crazy, and even my ISF, like, my sensitivity has improved quite a bit too. So in that way, it's really helped. That's

Scott Benner 21:58
excellent. Good for you. I'm sure over time it'll I mean, do you need it or want it to impact your weight? Or maybe you don't. I used to hate ordering my daughter's diabetes supplies. I never had a good experience, and it was frustrating. But it hasn't been that way for a while, actually, for about three years now, because that's how long we've been using us Med, us, med.com/juicebox, or call 888-721-1514, US med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omnipod, the number one fastest growing tandem distributor nationwide, the number one rated distributor in Dexcom customer satisfaction surveys. They have served over 1 million people with diabetes since 1996 and they always provide 90 days worth of supplies and fast and free shipping us med carries everything from insulin pumps and diabetes testing supplies to the latest CGM, like the libre three and Dexcom g7 they accept Medicare nationwide and over 800 private insurers find out why us med has an A plus rating with a better business Bureau at US med.com/juicebox, or just call them at 88872115141, 7211514, get started right now, and you'll be getting your supplies the same way we do. I

Akshira 23:28
do. I would like to, I initially read a lot about how it does, you know, affect we I was, I was earlier, wanting to take it on me for a week. I didn't even care about the all the side effects would have, like, good side effects on, you know, the insulin, yeah, on the insulin aspect. But I'm so glad, like, now I don't care about the weight, as long as, you know, my insulin is affecting much better and all of that stuff. Has

Scott Benner 23:53
it impacted your spikes at meals, yeah, it has, right? Yeah,

Akshira 23:58
it has earlier, just to be like a mountain, you know, like, up down, up down. Right now it's more gradual. And it was already gradual, you know, listening to you guys in your podcast, and thank you so much for that, but I think it's much more smoother. The curve is more smoother now that I take GLP medication right

Scott Benner 24:18
before we recorded, to get we started recording. I actually sat in on Arden's doctor's appointment. Arden just got back from college, so she had a doctor's appointment today that was just virtual, and we went over her GLP, you know, her insulin, all of her stuff. Obviously, we're going to try to cut her GLP dose back, because she is having trouble being hungry and and she's like, you know, she's lost too much weight at this point. So she's, you know, we're, we're like, well, we want to get this GLP down to where it will help her with her diabetes, help with the PCOS stuff, but not keep her from eating. You know what I mean. So, like, that's the spot she's in right now. The doctor asked her to, like, you know, she's like, let's try to put. Put like, seven pounds on, you know, kind of as healthy as possible, like, put, put seven pounds on, so that's what we're working on right now. What it's done to our blood sugar control is insane, you know. So, like, I mean, I actually showed this to the doctor, but I have it here. I'll show it to you as well. Now, this is obviously injected benjano. This is her last 24 hours. And that's a 70 to 120 blood sugar. Those two excursions up went to 160 and that was it. It's just crazy, you know, like, I mean, for people who can't see, it's super stable for, I'd say, 20 of the 24 hours between 80 and 100 and, you know, pops up to 120 once or twice, pops to 160 once or twice. It's probably looks better than most people's. Do you know, yeah, the glps are crazy, but I'm, I'm excited that the pill is working for you. Is that the way they go there in India, with a robust or do you see people injecting glps as well?

Akshira 25:59
There are people who are injecting, who take ozempic, or I think ozempic is available in India, but it's more type two medication, and my doctor just couldn't give it to me. He said, I wouldn't. I don't want to prescribe it for you, so I take the pill

Scott Benner 26:16
every day. If he did, I don't know how your like coverage works. If he did prescribe it for you? Would it be paid for? So

Akshira 26:23
none of this is covered by anything I'm paying out of cash, out of my pocket, for all of this. So it's my GLP, my so the GLP medication is really expensive too. Yeah. The rival says, yeah. So the pill, the pill that I take, so it's once you need to take 30 pills, right for a month. So it costs the same as much as the sensors do. So it's like 10,000 rupees a month. Is what the pill also cost. Wow, for a month, it's very expensive. Well,

Scott Benner 26:51
no wonder you don't want to have kids. You already have one. Your Diabetes is a kid. Yeah, your diabetes might need to go to college one day, and you're going to have to

Akshira 27:00
save up, and if I'm gonna live to like, whatever exactly, I need to have so much money in my account that I have to do this whatever. So

Scott Benner 27:12
explain to me, so there's no like, you have a job. You work, yeah, okay, and there's no like, here in America, you might get a job, and then your job might offer you health coverage. You pay for it. And does that exist there or no? Yeah,

Akshira 27:26
so insurance does exist, but it's it only covers hospitalization. So if you are admitted in hospital for something, you need to go through a procedure, or you have some operation, blah, blah, blah, all of that stuff is covered under insurance. You don't have to pay for all of that stuff. But your treatment so you so you have a disease and you're treating it by by any means that is not covered by insurance, no

Scott Benner 27:52
matter what. Like diabetes,

Akshira 27:55
it could be anything. Yeah, it could be heart disease, it could be diabetes, could be whatever. It's not covered.

Scott Benner 27:59
That's it. I see, wow. Well, so then everybody growing up in India is thinking about that. It could affect everybody at some point. And with the type two population, the way it is, which is massive, right? I'm not wrong about that, yeah, yes, yeah, yeah.

Akshira 28:14
But so for type two, it's they usually prescribe me for men, like 90% of people who are diagnosed with type two is prescribed Metformin, and metformin is really affordable. It's very easily available, and it's not that's not a very expensive they've

Scott Benner 28:30
been making it forever. It's basically free. Yeah, yeah, here too. It's not expensive either, yeah. Okay, so in your note, you said that you'd like to talk about dealing with some depression around your diagnosis. Can you tell me about that?

Akshira 28:46
Yeah, so, you know, just referring back to what I said, like, I was diagnosed during COVID, and was so crazy. It was so intense, and I don't have any memory of it, because I was, you know, in the ICU, and I was admitted for like, couple of days, maybe unconscious.

Scott Benner 29:03
You were in DK, unconscious. Oh my gosh, did you almost die?

Akshira 29:06
Yeah, I almost died. So I had COVID. I got COVID here in India, when they, when they do your COVID test, they give you, like, a number that you know is representative of how high or low your infection is in the body. Higher the number the most severe is your infection. So I think the highest it goes is about 20 or something. And mine was like 18. So so the level of COVID, or whatever, the infection that I had, is

Scott Benner 29:37
that the viral load, maybe? Is that how they talk about that, okay, yeah,

Akshira 29:41
something like that. So that was, like, really high. And I remember when I got COVID, I saw the the report, and I was okay, you know, I was fine. I just had some fatigue, and I was having some body pain. But apart from that, I was okay. But two days after that, I was just constant. Throwing up. I couldn't keep a bite of food down, and like, one week later, I wake up in the hospital in the ICU. I don't know what happened on those five, seven days. I have no How

Scott Benner 30:13
did your husband like describe it to you later?

Akshira 30:15
Yeah, I think more. So my parents also live very close by me i At that time they did. So, you know, they were the ones who were really taking care of me. My husband also got COVID, subsequently, like, couple of days after I got it, so they were like, nobody could come with me. They have like these crazy stories about how they make some 100 calls in a day to get a hospital, to get a bed just so that, with a bed with an oxygen cylinder so that, you know, I needed to be on o2 so, you know, they they did like, a, like, a ICU bed, basically. So they were, like, making so many calls and pulling random people from their contact list and trying to find some hospital bed somewhere. And I think, after like, couple of hours, like, I think towards the end of that day where I went unconscious. I think that's when they found a hospital bed and they admitted me, and they couldn't they were they used to get, like, a whatsapp video call from my from the doctor who was taking care of me in the ICU, just to give updates about how my health was on that particular day. And you know, they would always say things like, Oh, her, you know, her organs are feeling or, you know, we're not able to revive her, or, you know, it's going to be really messy we need. And they would call, they would ask for a very specific type of medication, which was a treatment for COVID. At that point in time, at least here in India, it was called Italy, zumab, or something like that, some steroid medication. I think, wow. So, yeah, so they would ask for that, and my parents were, you know, trying to source that medication again, from so many different like, they put up Twitter posts, on Twitter, on Facebook, and, you know, everywhere else, trying to find that vial of medication. How common

Scott Benner 32:00
is that like? So you're in a hospital dying, and your parents are on social media trying to find medication for you?

Akshira 32:06
Yeah, yeah, because the hospitals couldn't store it, there was such a dire shortage of that medication. And you know, it was such a difficult time for them, because they were really pulling the weight for the family and for me. So my husband was not feeling well. He was he was also subsequently admitted in some other hospital in another part of the city, right? So it was my parents and my sister, the three of them who were, you know, trying to do a lot of sourcing of this medication, and the and the and the doctors told my parents that you try if you can get this medication, because we are not able to get

Scott Benner 32:44
it. Is that common in India, or was it just specific around COVID? No, just

Akshira 32:49
around COVID. It was just around that time because it was so intense, the like the second wave that we had, was so crazy. You guys

Scott Benner 32:56
got crushed the second time around, I remember, yeah,

Akshira 33:00
from from April 2021, till, I think October of that year it was that. That's when I think the second wave was and it was so crazy. It was really intense. And the India,

Scott Benner 33:11
India population is pretty, pretty equal to China, like you guys almost have, like, 1.5 billion people there, right? Yeah, yeah, yes, yes, yeah. And in a much smaller area. I mean, we have maybe three 30 million people and, yeah, geez, that's a lot more. So that COVID must have spread like crazy, right? Yes,

Akshira 33:33
it did also, because after the initial wave of COVID, I think, I think that kind of went a little mellow, and then, so towards the end of 2020, a lot of places opened up. And a lot of places, you know, started like, like restaurants and hotels, you know, start were open to people to come visit and stay and all of that. So I think that triggered the second wave. And the spread of the second wave so crazy, sure that you know it was like widespread at that time. So now

Scott Benner 34:04
you when you get, first of all, you got through it. But how long did it take them to get you conscious and get you moving again? Yeah,

Akshira 34:11
so I think it took about like five, six days. I was in the ICU for about five days, and then I so when I like, it was a week of no memory, right? Like, so I wake up and it's a week later and I have no recollection of where I am. How did I end up in the hospital? And there's nobody around, because it was all isolated. Was a COVID board, like, only COVID patients were there in that ICU, so, yeah, even doctors were wearing, like, those, those suits, right? That protected them from head to toe. And so I was like, I was like, Dude, what the hell am I doing here? You know, like, what happened? You

Scott Benner 34:45
didn't think I knew it zombies. It's happening.

Akshira 34:50
Am I in some rehab center somewhere? Like, what's happening? I believe

Scott Benner 34:53
you're describing episode one of The Walking Dead, by the way. Yeah.

Akshira 34:59
Okay. It, and I was really mad at my parents for, like, abandoning me, and my husband for abandoning me, and I'm like, why am I in the hospital alone? Like, what's happening? And I was so delusional because of the amount of pain of medication I was on. I don't know what medication I was, just like, my body was so beat, I didn't have energy to do anything. I remember, like, they had to teach me how to walk after a couple of days after I woke up in the ice, they had to, like, like, a baby, yeah, the baby had a box. Like, that's how it felt. Yeah, I took like, couple of steps and Yeah, well,

Scott Benner 35:33
you're lucky to be alive. Obviously, I know, but, but then, how long after that, does the diabetes happen?

Akshira 35:39
So I woke up, and the first question. So when I met the doctor, the first time the doctor came to visit me after I became conscious, and the doctor asked me, So do you have diabetes? I'm like, what? I don't have any diabetes. What are you talking about? She's like, No, you definitely have diabetes. And I'm like, No, I don't. Are you joking? You're joking right now, I definitely don't have diabetes, and the nurses and the ICU come and give me insulin injections. I had no idea how much insulin they were giving me. What is the insulin that they were giving me? What they were giving me a basal? I remember my vision was so blurry I couldn't see anything. Yeah, during the day, I maybe I would wake up and my vision would be so blurred, and then they'd give me, I think during before breakfast, they would give me some insulin. By 12 till four, maybe I could see a little bit, my vision would be back to normal. And then again, after dinner, it would be so blurry I couldn't see a damn thing. Yeah,

Scott Benner 36:32
that it's why I asked, like, when did the diabetes come? Because I thought that, did they just wake you up and spring it on you? But they also, I realized, then they might have just thought that you had it and just went to DKA, yeah, which

Akshira 36:46
nobody told me that I was in DKA until, I think a month after, like I was discharged. So this happened in April 2021, so I think sometime in May, I went to meet, like a doctor, like that doctor who took care of me, who was, like, my, you know, my primary doctor in the ICU, so she asked me to come and meet her, like, a month after, and that's when she's like, okay, so you're a diabetes now, you need to be on insulin. You need to take this you need to take whatever X amount of units at this day, at this time before, you know, before breakfast and before dinner, and just you need to take in the morning after breakfast. After breakfast. And I was like, okay, yeah, cool, whatever. Like, I had no idea what I was doing. I didn't know why I was doing it. Pissed at

Scott Benner 37:28
your parents and your husband for leaving me in the hospital just all over the place.

Akshira 37:35
Oh, and, and I also lost my voice. I couldn't speak completely, yeah, like it was just air that would come out of my mouth. No kidding, I used to sound so it was so scary if someone would speak to me at that point in time, they were like, Oh, my God, what is wrong with you?

Scott Benner 37:53
Did they tell you? Why were you intubated?

Akshira 37:56
No, I was not intubated. Really. They don't know why I lost my voice, and so I was only worried, why is my voice gone, and when am I gonna get my voice back? You know, like, I care

Scott Benner 38:09
this guy says I have diabetes. I definitely don't have diabetes. And like,

Akshira 38:16
and I was abandon the hospital. Please? Something good.

Scott Benner 38:20
Any good news? What's for lunch? Yeah, my gosh, was it a depression that hit you right away? Did it come over time? Was it like, like, a clinical depression, or were you sad? Like, how did it feel? Yeah, yeah.

Akshira 38:33
So I think I was really upset by the whole thing. I think losing my voice was something that really, I think that was, like, the last, that was the last shot, yeah, that pushed me over and because I couldn't talk to anyone, I couldn't do anything. I couldn't like even, you know, I like the work that I do, I don't need to speak to people, you know, I couldn't do that. So I was like, Oh my god. Why? So I kind of, you know, I was, I was thinking, why am I alive? Like, you know, why did I make it through this? Because a lot of the doctors said that, you know, you're lucky to be alive. I'm like, What is, what am I lucky? What did I feel lucky about? You know, I can't

Scott Benner 39:12
talk, I can't walk, I have diabetes, yeah, I

Akshira 39:17
can't eat. What I want, no, so, like, what am I lucky? Like, what should I feel lucky about? You know, so I so I remember, you know, being like, so I don't want to say survivors guilt, but it was like, why, why did I make it out? Like, I just couldn't figure it out. And how I did take, take couple of therapy sessions. But, you know, therapy, in therapy, you need to speak, and I couldn't speak, so that didn't go really well for me.

Scott Benner 39:42
You just sat there and somebody told you how to feel.

Akshira 39:46
No, I mean, I would try to, you know, get involved, yeah.

Scott Benner 39:53
How long till your voice came back? 810, months. No kidding, really? Yeah.

Akshira 39:58
Wow. So I. Did vocal cord, vocal cord therapy. So the lot of exercises that involve you making different kind of noise and vibrations with your mouth, and, you know, so I saw vocal cord like a like, voice therapist, yeah, had to do that for some time. And is

Scott Benner 40:18
that, I think, like a common thing from, like COVID or from, have you heard any? Has anybody given any explanation for it? No,

Akshira 40:27
no. Nobody could explain why that happened, or how did it happen? Is it common? Very, very, unheard of. I think, I think it was just me, or maybe I don't know. Sometimes they say it could be fatigue, or maybe you know you nobody knows, you know, nobody knows why it happened, and nobody knows how I got it back as well. Well,

Scott Benner 40:48
it's lucky. I mean, I guess you are lucky. Do you feel Do you feel luckier now that you've had time?

Akshira 40:54
I'm not lucky, is the right word, but I do feel grateful that, you know I'm that I had the support system, that I had people who, you know, who took care of me and were there for me, and you know, who could help me through it. And, you know, I think it was more difficult for my family than it was for me, because I don't remember a damn thing. And you know, they had to live through those few days where they had these intense calls from the doctor, and doctor was just giving them bad news. And, you know, yeah, so I think, I think I'm just grateful that I had those people who were taking care of me, and I made maybe I made it. Maybe I'm lucky because I have them. Yeah,

Scott Benner 41:30
I just well for sure, but it is really, it's such a good point, honestly, though, that not that I think people would have skipped over in your conversation, but your family is being told it's on you to go find medication. She's gonna die, and there's nothing we can do about it. That's I mean, have you talked to your parents about that? Yeah,

Akshira 41:51
I did. So this, this response they were given at that time was very common. A lot of doctors were giving that response because they couldn't find that medication, and it was so scary,

Scott Benner 42:01
but still, forget what's going on in the world. Like, on a personal side, somebody comes to you and says, Hey, you don't know how to get medication, but if you could do it, it'll save her. And if you can't, we're not sure what's gonna happen, right? Like, yeah, yeah, lot of pressure. I

Akshira 42:15
mean, yeah, they were, like, really stressed at that time too, you know, and I, even now, my dad says that I was so glad that that they didn't get COVID at that time, because I think COVID got everybody except for my mom and dad. You know, there were, there were the two people in my house who did not get COVID, and because of that, they were able to, you know, do all of this running around and, you know, arranged all these, you know, all these medications. And, you know, get, they were able to visit in the hospital whenever they could, a lot of that stuff. So no,

Scott Benner 42:50
Jesus, really crazy. So I think I've kind of saved this last bit of our conversation, because you just, in your notes said, like, existential questions. And I want to, I want to, I want to talk through that. That's That's really interesting. But first I have to ask you, I mean, you're sitting, do you want to share your location? Or no, you're sitting somewhere in Southern India, and I'm in New Jersey, like, how the hell do you know who I am? And I had that feeling, and then I went and looked. And today the podcast is number 62 in India, in the medicine category. So you're not the only one listening to it.

Akshira 43:20
I think I've heard you say that before that it's very big in India. Single handedly, take credit. No, I feel like I'm your biggest listener. Like, that's what I mean, you know.

Scott Benner 43:34
No, listen, if you're out there telling people about it, I'm happy to give you credit. But, like, how does that initially listen? You're younger than me. And so the internet, I don't want to say that the internet is surprising to me. It's not but I grew up through all kinds of shifts in technology, like I know that there were things that I used day to day in my life that if I put it in front of you, you'd be like, I don't know what this is. I can't even imagine what this does, right? And so there's been these big leaps I've kept up because of my job. So to be perfectly honest, I might be on the bleeding edge of technology with everybody else, but it still somehow finds the 12 year old inside of me, and he goes, I don't understand how a lady in India knows who you are. Like. Do you know what I mean, like or like? Yeah. So how does that happen?

Akshira 44:23
I think it's about last year, or maybe it towards in 2022 end of 2022 where that's when I was coming to terms with the fact that, okay, I do have diabetes. My voice is back. Now I have to focus on, you know, the other aspect of my aspects of my health. And, you know, get that into order. And like any millennial word, you know, there were, I was on Instagram trying to find people who also have type one. And I found somebody who said, Oh, talked about your Pro Tip series. And I think podcasts were becoming really popular in India around that time, during COVID time, I think. And, yeah, so I. Started listening to your Pro Tip series. And yeah, so that's and from there, I have not listened to many of your older episodes. I do listen like maybe 800 and upwards. Is when it's when I started, yeah, yeah, yeah. So that's, that's when I started listening to your podcast. And I listen to it every day. It's what I listen to when I go to work. Because I think, I think when you upload is kind of coincides with when I'm going back from work, so, you know difference? Yeah, yeah. So

Scott Benner 45:28
I'm just gonna go get my kids after this and tell them, because they they just laugh at me constantly. It's very funny to see like, like, right now we're having this conversation, like, I seriously might be announcing a cruise for listeners like, like, next year, right? And I said that, like, in the house, and both of my kids were like, no one's gonna do that with you. And I was like, I think they might. And she both of them are like, you're out of your mind. And one of them started just laughing. And I was like, I wonder if I said to them, like, Hey, I just met this person. By the way, she listens to my podcast in India every day. If they'd be like, No, she doesn't. But, I mean, I'm aware, obviously, the podcast charts in 48 different countries, but it's limited by English speaking, like the ability to speak English. Can I ask you one quick question before I move on in your story? For me, we're researching right now. We have some back end work happening with putting the podcast into different languages, but like the the spoken word will be aI generated. Do you think that's listenable?

Akshira 46:32
Not really. I think, I think, I think in India, I think English is fine. I don't think that's

Scott Benner 46:38
it's not. If English isn't a barrier there. No, it

Akshira 46:42
isn't. And I didn't want to tell you this, but I listened to your podcast at 2x speed.

Scott Benner 46:49
I must be really fast at 2x speed. No, yeah.

Akshira 46:55
So the last week, I've been listening to it in normal speed, just so that, you know, I can understand your voice modulation, all of that other stuff better. But I don't think English is I did hear in in some episode, I think with Jenny, you were talking about doing it in translating it in Hindi, and you were saying that Hindi is the largest speaking language in India. So I don't think English has too much of a barrier. Okay, if I'm being honest, I think, I think English is fine. Okay, that's what

Scott Benner 47:22
I wanted to know. Thank you, because it's a lot of work and effort behind the scenes. Yeah, also, let me put this out to you. There will be a cold wind episode in the next couple of months with me and an Israeli doctor, and she talks faster than I do. So if you can listen to us speak at two times, I'll be very impressed. I It's not often that I'm recording with somebody and I think, oh my god, slow down. But she was so fast. Oh my god. Okay, all right. So what did you mean by like, existential questions, like, what's happened to you in the last couple of years? Yeah,

Akshira 48:01
yeah. I think I'm just going back to what I said, you know, in terms of why, why did I make it out like, you know, I went through such a difficult time, you know? And if the dka complications were really tough, and it was really hard to wrap my head around the fact that I'm here today, and, you know, my that I that I get to live, and I didn't know why. I honestly thought if I weren't here today, it wouldn't make any difference,

Scott Benner 48:26
had you felt like that prior to this?

Speaker 1 48:28
No, no, I didn't know. Why

Scott Benner 48:31
do you think you have that kind of like, because it's because you're not, you're not suicidal, right? No, you don't want to be dead. Like, right? Like, so something happened. You got close to the edge of death, and, yeah, you are suddenly seeing the bigger picture about life and existence. Yeah, I guess.

Akshira 48:47
So I just started really pondering about so a lot of people in India, like, I think, all around the world, right? Many people died during that time. So I was just wondering, why am I the lucky one, you know, why? Why am I here?

Scott Benner 49:02
Has it given you a different focus? Do you attack things differently now? Do you appreciate things differently, or is it just a nagging question in the back of your head?

Akshira 49:10
No, I think it definitely made me take my health a lot more seriously, and really wanting to do better, and wanting to, you know, just be there for my family like they were there for me. Yeah, I think, I think just gave me a lot of gratitude and a sense of appreciation for those around me. Yeah, mostly, yeah. How

Scott Benner 49:30
do you see that materializing in your day to day life? Have you noticed changes about yourself? Is it more about how you think about things, or are you are you consciously doing things differently.

Akshira 49:40
Yeah, I think I'm just a little bit more mindful, I guess. And I think a lot of that does go to the way, you know, I started really looking at my diabetes and, you know, started taking care of it. And I think, like, a year, year and a half ago, I really didn't care if I was sitting at 202 50. You. All like, you know, the whole night, yeah, I didn't think anything of it, yeah, but I think there are times now that I do, you know, that I do think about how difficult it was when I was diagnosed during 2021 and I really want to be more careful about those things. And, you know, really want to be on top of my health and of my diabetes, yeah, was

Scott Benner 50:22
my Pro Tip series helpful for you to make changes? Or did you know definitely it wasn't like you knew what to do and you just weren't doing it? Or does it like, does it give you a motivation, or does it give you knowledge? Or both,

Akshira 50:35
um, I Yeah, it was knowledge primarily. I had no idea what I was doing. I had no idea what to do, nobody so until a year ago at my doctors. What I'm trying to say is that only a year ago in my doctor's office, they taught me how what is the carb ratio, but I learned it much before that, thanks to your podcast and your Pro Tip series, wow. I think there was one episode that you did with someone who talked about the water method of fat and protein impacting in, you know, blood sugars, yeah, so that was like a game changer of Indian food is very fat heavy, yeah, has a lot of fat and a very common way when, when people go out to eat, a very common thing that you would see a buffet and buffets would have, like, a lot of mixture of food from all over the world, like you would have into, like Chinese food, like Indian ice, Chinese food, and, you know, Indian food and and bread and all of that, you know. And I think, and I will always see that fat spike, like, four or five hours after I've eaten, right my food. And I never understood why I was like, What am I doing? Because three hours after I've eaten, maybe I'm in range, but then the fourth hour I'm just like, high, high, high, and it's not going down. I had no idea, yeah,

Scott Benner 51:50
so no one told you that. When you hear people talk about the direction they get from doctors in America, is it the same thing that happened to you? So

Akshira 51:59
I had like, three doctors in three years, okay, who were really not helping me at all, like not helping me on the day to day stuff, like, you know, they would like, if I would go to them once in couple of months, they would say, okay, increase two units, you know, of your breakfast. And so they would call it like breakfast insulin and lunch insulin, which is, like, so irritating now that, you know, look back on it. Nobody even taught me what a basal Bolus regime is. Nobody taught me how does basal work? Nobody, you know, nobody educated me on all of these things. I think I learned a lot of that from the podcast and and just a year ago, the doctor that I go to now are the, you know, the hospital that I go to now that's where I, you know, get a little bit more help from, you know, from my from them, and they put me on the pump. And are

Scott Benner 52:51
you getting more help from them? Because you know the right questions to ask. Now, yeah,

Akshira 52:55
yeah, yeah. And I know what to look for. And sometimes when I ask these questions, I already know the answers. But, you know, but you just, you did ask you did

Scott Benner 53:04
ask it, because I would give anything to be there in an Indian hospital when they're like, how did you know that you said there's a man named Scott on the internet. I would love to be there for that conversation. I just see the look on their face, yeah. So moving forward. Do you think? Like, do you have goals that are out of the sevens with your A, 1c, and how do you think you get to that? Yes,

Akshira 53:27
there are definitely. I don't want to be in the sevens. And I think that was another aspect why I wanted to come on the podcast. Because all these so inspiring stories, like, within three months, you know, I came from an eight to a 5.2 and I'm just sitting in the corner and crying. I'm like, Oh, my God, no, I can't do it. I think in three months I can move it by point two. Like, so I've been so consistent. Like, I go from a 7.8 to 7.6 to 7.4 to 7.2 that's how my craft, you know, have been in the last year. Yeah. So my goal is definitely to be, like, I said this year. I really want to be in the like, that's that's my goal, and

Scott Benner 54:01
that's doable, you think, yeah, I think that's doable. What do you change to get to that? What do you have to do? Yeah, a lot

Akshira 54:08
of it has to be, you know, more diligent with, you know, pre Bolus thing for my meals and and the bumping energy and the corrections, like, you know, if I'm sitting at 141 50, I think I don't care about it during the day. I think I need to be more diligent about that. And kind of you know, I'm sure that I'm below 120

Scott Benner 54:29
at least. I see, what are your alarms set out on your Libra? Oh, they doesn't have alarms. It's the libre one. So,

Akshira 54:35
yeah, correct. So, so what? So, what I So, what you can do is, there is this transmitter called the mm three or something. Okay, so it's like a, it's a made in China thing, so you can add that,

Scott Benner 54:50
are you wearing it? Oh, I've seen that before, yeah. And then that, like little box that goes over top,

Akshira 54:56
Yeah, correct. Correct, correct. Yeah, I've seen that before. So that works. Like that sends data to my phone. So I don't have to keep scanning up with the libre one, you have to scan it to your device. Right with that transmitter, it sends data to your phone, and you use a third party app that you know gives you those numbers. So I do have alarm set at 150 so post 150 I am, like, really mindful about it, and then try to push it down. But if I'm sitting between 130 to 150 I think I don't take too much action. I think I can be a model. I can be more diligent with that, okay. And secondly, I think the right, the GLP medication has literally helped as well. I wonder

Scott Benner 55:33
what happens when you go to the 14 milligrams too? If that, if that maybe does something as well. Yeah. And

Akshira 55:39
so, so I just wanted to, so I was also having insulin resistance and PCOD before I had COVID, right? Like, so I, so I live like, 26 years of my life as a normal human being, right? Like, I didn't have, not that I'm not normal now a functioning pancreas, right? Yeah. So I did have PCOD at that time, and then did have insulin resistance, so if any, so if I were, if I was not diagnosed in the way that I was, like, you know, I had COVID and decay and all of that stuff, I'm 100% sure that I would have been diagnosed as type two diabetes, type two diabetes, and I would have been given metformin and all of that stuff, and I would have struggled for years and years. Yeah, in a way, I'm really grateful that I did get diagnosed the way I did, because that that it clearly pushed me into the type one category. Then they quickly, then they did the JD antibodies test, and then the C peptide test and all of that. It was like it really indicated on the type one realm, whereas if I hadn't been if I hadn't had that diagnosed story, I would have definitely, you know, clearly classified into type two. I'm, I was always a little bit on the, you know, the not on, not on the leaner side, like I was a little bit on the heavier side. I would carry more weight in my stomach. So anybody would look at me, would, you know, probably think of me as, yeah, she has, you know, she would definitely have type two diabetes. Yeah. So India,

Scott Benner 56:59
I see here that type one in India is growing by 6.7% a year. Yeah. And actually type two only grows well only, but grows by 4.4% in India. So it's it's outpacing type two is in growth. That's really something. And then you have to go find all this information for yourself. And then you've got to self pay your stuff. Is your pump? Are you paying for your pump? Out of your pocket too? Your pocket

Akshira 57:23
too? Yeah, I did. I did, yeah, that's like maybe a year's worth in rent. Maybe that's like a one time cost for the pump, and then the supplies are additional.

Scott Benner 57:34
Yeah. So when you hear people in America complain about stuff, do you giggle a little bit when you're listening the podcast?

Akshira 57:42
I No. I mean, I understand the sure, like each system has their own struggles, I guess. Yeah, you know, I do understand the perspective. But see, the thing is, in India, if you can pay cash, things are easy, like a life is easy, like if you have more disposable income? Yeah?

Scott Benner 58:01
Well, you're describing the entire world. But okay, yeah,

Akshira 58:05
no, what I meant, no, no. So what I'm trying to say is, from what I've heard, like a while of insulin, just in clear monetary terms, is more cheaper to buy in India than it is to buy or in out of cash, in in the US, I would imagine. Okay, yeah, yeah. So what I'm trying to say is that if you have, if you have that disposable income, and then it is more easier to do it in India than it would be to do in in the US, sure.

Scott Benner 58:32
But you also just said, If I, in case I, unless I misunderstood, is that the Ipsum Ed pump cost you the equivalent of a year's worth of rent.

Unknown Speaker 58:39
Yeah,

Scott Benner 58:40
right. So, you know, I'm just saying that's, it's insane, like it just Yeah, and you'll have to pay that. Are there supplies that you'll have to

Akshira 58:52
Yeah, yeah. So, so if you count the cost of the libre sensor, my rival, and the pump supplies. So that's so I'm paying like, I'm paying my rent, and I'm paying the equivalent of amount of my rent for for my diabetes supplies as well. Jesus, yeah, yeah, my gosh, a lot of money. Well, it

Scott Benner 59:15
is, and it's money that could be going towards your savings or your living situation, or, you know, any number of things, honestly, Yep, exactly. Wow, was this hard for your husband to accept? Yeah,

Akshira 59:27
it was. So we were married a year before I got I got diabetes, so, and we were dating for a couple of years before that. So it was definitely harder, and I think so. So I think a lot of it was more incremental. It was not like one day, it was 3x the expense that, like, initially, we started with MDI, so that was a little manageable. Then we moved to the pump, and that was like a little extra, a little more money. So that's okay, we could manage and then now I'm on diabetes, so that's like a little more money, and now to manage that as well. So yeah,

Scott Benner 59:59
are you guys? We. Guys arranged? Or did you meet on your own?

Akshira 1:00:03
No, we met. We met on a dating site, actually. So yeah, and we've been together for, I think, seven years now. Good for

Scott Benner 1:00:10
you. Congratulations. That's lovely. Yeah, gosh, is there anything that we haven't talked about that we should have, anything you wanted to bring up that I haven't gotten to? Yeah,

Akshira 1:00:18
so I just wanted to talk a little bit about the pump, and so we so I don't use, I don't have any looping system that I can use with the ipso med pump. If you have, I think if you have the Medtronic, you can do some, there are some, there are some ways to a loop with using the Medtronic.

Scott Benner 1:00:36
There's an APS that works with Medtronic, and a couple of other things that you

Akshira 1:00:42
can do, yeah, I think there's something called a Riley link, or something like that that also works. If you have that, you are able to loop with that, with that pump. But I, but my, my doctor asked me to go for this, and I, I, yeah, I think I just went for it without thinking too much about it. So, yeah. So I think using that, using the pump, is definitely really helped. And just just and again, thanks to, you know, the episodes that you did on the on the Pro Tip series, on, you know, how to manipulate basal, how to do extended, you know, Bolus, and how to eat, I didn't even know, like doing, you know, 2x you could increase your basal by, you know, right, 100% for a period of time. All of those things were so helpful. Like, nobody told me that, nobody taught me that. So a lot of that was, you know, self learn, self taught, I guess I said I learned it from, you know, the podcast. So a lot of people in India, do, you know, kind of argue about, should they, you know, use the pump, or should they stick with the NDI because it's more affordable and it's, you know, it's more easily available, rather than the pump, yeah, and I think it's not just a mode of delivery of insulin. I think it really, you know, helps you understand how to adjust your insulin to the way that you eat food. So, yeah, that was, that was another thing that I wanted to talk

Scott Benner 1:02:08
about. I'm I was looking around a little bit here the my life, Ipsum Ed pump does pair with the Dexcom g6 and the my life cam, APS, FX, which is an algorithm. It also goes to FreeStyle Libre three,

Akshira 1:02:22
yeah, I don't get, we don't get any of that in India, yeah. I mean,

Scott Benner 1:02:26
if you just have the one now, you could be years away from seeing any of the other generations of that stuff. The company's gonna have to stop making it so that you can probably so that they start giving it to you. That sucks.

Akshira 1:02:39
Oh, maybe you can put in the word text. I'll

Scott Benner 1:02:43
call up. What I'll do is I'll call up Parliament, and I'll call up a couple of other places, and I'll get the whole thing worked out for you right here from New Jersey. Yeah, yeah, that would be great. Somebody, somebody said something to me recently. They were like, How come you don't just get this? And I was like, I think you overestimate my power. I can't make that happen. That's funny, though, but, oh, geez, bump side, you know, because you would use an algorithm if you could, wouldn't you? Yeah, yeah, definitely, 100% you're way ahead of the curve for India, for understanding this stuff. Or do you know, a

Akshira 1:03:14
lot a lot of people, no. So a lot of people do low carb just because it's easier to manage with the technology that you have, and it gives you more stability, or, you know, more more predictability in the way that you're in your blood sugars look like. A lot of people who have diabetes do low carb in India, or that's what so any doctor, the minute you go to a doctor and they see that you have diabetes, the first thing that's going to come out of their mouth is low carb, they're just going to tell you to do low carb. And I was, like, really frustrated by that advice, because I don't want to look up, yeah, you know, but, and that's also not addressing the problem, right? You're they're not teaching you how insulin works. They're not teaching you how to manage your diabetes. They're just telling you traveling the foods that you eat in for the last 20 years and eat something completely different, and that's going to help with diabetes, but that's also not sustainable. I For me personally, in the long term, right? So, but rather than spending time to educate people, they would, they give you give out the easier advice, which is to, you know, do low carb.

Scott Benner 1:04:18
I wonder why? I mean, there's got to be something I don't understand about the business side of this. But why, if I sold an insulin pump, would I not want to sell them in India? You know what? I mean? Like, there's a lot of you, and there's a lot of you who are having like, diabetes. Like, why would I? I wonder if India does India stop American companies from doing business in India, or, I don't know, but, like, it just seems like such an obvious thing.

Akshira 1:04:44
Maybe it's a one time cost that's associated with buying the pump is, like, really expensive. Yeah, I think that because it's not like, so insurance doesn't cover those that kind of expense, right? Like, you have to pay in cash. Much. So it's a lot of money, you know, like, you the amount of money that I use for that I used to buy mine. So I can do it. I can, like, you know, put a down payment for a house in a very good area, right? Like, Well, what

Scott Benner 1:05:11
I'm getting at is, why would the insulin pump company not say, look, let's sell them cheap there. Because we're going to sell so many of them will be okay. Like, you know, because there's two ways to go to value your your your product. It's either I'll make something expensive so that we make a bunch of money off of it, or I'll make it cheap and sell a lot of it like there's those are basic business ideas. There's got to be, there's got to be a component there that I don't understand, because it just seems like an untapped market and and a very I'm generalizing here a little bit, but a very technologically adept population in India too, you know what I mean? Like, this is the kind of stuff you guys would love if you had it.

Akshira 1:05:52
Yes, yeah, yeah. Maybe, maybe it's the education aspect of it. Maybe there are too many people and not enough educators to, you know, help spend the time. I don't know

Scott Benner 1:06:03
feels like people don't want to make

Akshira 1:06:08
money to me, or maybe they should just send links of your podcast to everybody that. I mean, that would be simpler, right? Yeah, that would just be easy, yeah, because episodes are already there, all you have to do is press play

Scott Benner 1:06:18
exactly. Can you imagine if I do a talk in India one day, that'd be nice.

Akshira 1:06:22
I think that would be, yeah, well, thank

Scott Benner 1:06:24
you. I appreciate that. It is, I mean, in the end, just having people's best interest at heart and giving them the information that they need to grow and make decisions with is really most of it. It really is like it's, you know, there's, I'm not saying anything. I don't say anything on the podcast that's that difficult to understand or that crazy, like, you don't even mean it's not like I'm saying something. People like, oh my god, I can't believe it. Did you hear what he said? I should, I should Bolus before my meal. Like, you know, like it's, I know, if you never heard it before, it sounds crazy, but once you're accustomed to it, this is not like brain surgery level stuff I'm saying here, like, it just, I'm just, you know, I'm just the only one saying it, you know what? I mean, like on a big platform, yeah,

Akshira 1:07:12
yeah, you know. I remember very vividly the doctor, when they distract me from the hospital after I was diagnosed, literally said, do not take your insulin 10 to 15 minutes before you eat. You have to take it 30 seconds before you eat.

Scott Benner 1:07:28
I mean, then you're going to have anyone seen anybody? Yeah,

Akshira 1:07:30
and I did, and I did have an even seen the age for, like, two years, two and a half years. And I was like, What am I doing wrong? I'm doing exactly what I was told.

Scott Benner 1:07:39
Yeah, no. I mean, it's, it's, it's obvious. And then you add the high carb, high fat, you could, you could easily get an eight or a nine, A, 1c, and be trying with that, with that information, and God, if you gave up, you could, I mean, it wouldn't be any trouble to have a 1214, A, 1c,

Akshira 1:07:57
yeah, definitely. That's true, you know, and, and I knew that I didn't want to do low carb, and I, and I still don't want to do it. I had, I had lost so much weight just before I was diagnosed, so, you know, and I gained so much of it back after I was diagnosed. And I think, I think in those so and I was never scared of insulin either, because I would never see, you know, I've heard stories of people telling how one unit, you know, push them to a severe low and they were like, drinking juice, allowed to juice, and getting it back up. I have not seen any of that like I have not seen those kind of effects ever in the three years that I've been diagnosed. I had so much resistance already, because maybe I had PCOD, I had insulin resistance, right, right? So that insulin didn't work like that. And I can tell you, after being on the on the GLP medication, I have seen one unit moving me like crazy.

Scott Benner 1:08:47
Yeah, oh, I bet. Listen, I swear to God, Arden's going to use 16,000 fewer units of insulin this year. Being on a GLP medication, 16,000 fewer units of insulin. It's just fantastic. But while we were sitting with her doctor an hour and a half ago, she's like, Well, we definitely wanted to be able to eat more frequently, and we wanted to not, you know, we wanted to put a little more weight back on very important nutrition, etc. Like nobody's saying no, but the next pause step was, but we got to find a way to keep this going. We can't give away what's happening with her diabetes here, like, this is, so we're gonna back her dose off. If that doesn't work, we'll start spreading the dose out. Like, we're gonna try all kinds of different things, but she's getting such a benefit that I'm not saying we want her to be, you know, underweight, obviously, no, just like, obviously, we want her weight to be good. We want her nutrition to be good, etc, and so on. And we're gonna, you know, make sure things are balanced for that, but at the same time, I mean, you saw her graph. We can't give that away. You know what? I mean, like, that's some sincere, long term health implications there. So, so we're looking for a balance. We're gonna move her, remove her dose again, a hell and. Anything, if rib elsis Is is good for people, then let's go, I mean, you're gonna see the injectables be more aggressive and maybe work better if, you know, overall weight loss, etc, everything else that comes with it. But my God, like if, if rib elsis is helping you like this, then every type one should be taking one of those pills every day to see what it does for them, you know, yeah, see if they can help.

Akshira 1:10:23
Once, when I was eating something and I took, like, I think, two units extra, and I was like, in the 40s or something, I was like, Oh, my God, it's happening to me. Finally, that one extra unit that I took, it's the same thing that those other people on the podcast. Yeah,

Scott Benner 1:10:41
well, it's not do. It's not, not doable. Like, you know, people all the time think that it's, oh, that's for someone else. But, you know, listen, there's going to be situations where people can't do everything that somebody else does. But for the most part, using insulin correctly. It does what it's, you know, it does what I say, generally speaking. And for a lot of people who glps work for, they're going to see these kind of benefits. It's just what's going to happen. You're going to look back in a couple of years and look at all these people are right now going, Oh, type you or type one. You can't take a GLP and like, you wait till you see, like, how it changes. So, yeah, big time stuff. Yeah, I'm going to have to say goodbye. I'm running out of time. Also, I'm choking to death. I want to thank you very much for doing this is absolutely terrific. You were, you're fantastic.

Akshira 1:11:25
Thank you so much. Great time.

Scott Benner 1:11:28
Oh, good. I'm glad. What time is it there? By the way,

Akshira 1:11:31
it's 1050 at night. Oh, well, also, you

Scott Benner 1:11:33
got to go to bed so but hold up. Hold on. One second for me. Don't go away. Okay, thank you. Yeah, you

this episode of The Juicebox podcast was sponsored by us med. Usmed.com/juice, box, or call 888-721-1514, get started today with us. Med, links in the show notes, links at Juicebox podcast.com. A huge thank you to one of today's sponsors, G VO, glucagon. Find out more about G vo hypo pen at G VO, glucagon.com. Forward slash juice box, you spell that, G, V, O, k, e, g, l, U, C, A, G O n.com, forward slash juice box. Us. Med, sponsored this episode of the juice box podcast. Check them out at us. Med.com/juice, box, or by calling 888-721-1514, get your free benefits check and get started today with us. Med the diabetes variables series from the Juicebox podcast goes over all the little things that affect your diabetes that you might not think about, travel and exercise to hydration and even trampolines. Juicebox podcast.com go up in the menu and click on diabetes variables. Alright, guys, I'm out of here. Do me a favor if you need or want anything that is sold by one of the sponsors, please use my links. When you do that. You are supporting the production of this podcast, helping to keep it free and plentiful, and you're just helping me out. I pay my electric bill with this money. I keep the podcast going. I'm not saying buy something you don't want, but I mean, if you're getting an Omnipod, then go to my link. You know what? I mean, that kind of thing. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox podcast. The episode you just heard was professionally edited by wrong way recording, wrongway recording.com, you.


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