#1255 Almost Ensign
James shares his journey of being diagnosed with type 1 diabetes just 30 days before graduating from the Naval Academy. Despite this life-changing event, he pursued a career in aerospace engineering and navigated the challenges of managing diabetes for nearly 46 years.
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Scott Benner 0:00
Hello friends and welcome to episode 1255 of the Juicebox Podcast.
Jas was diagnosed with type one diabetes 46 years ago in 1978 at the age of 22. While he was in the Naval Academy, he was just 30 days shy of becoming an ensign when he was diagnosed. 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. People who want to buy quality and comfortable towels, sheets and clothing should go to cozy earth.com And they should also use the offer code juice box at checkout to save 30% off of their entire order. 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. If you're impacted by diabetes, and you're looking for support, comfort or community check out Juicebox Podcast type one diabetes on Facebook. Don't forget the juice cruise 2025 is on sale right now at juicebox podcast.com. Scroll down to the banner with the big boat on it click on it. And just like that you'll be vacationing with me and all of my friends. This show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn Find out more at G voc glucagon.com. Forward slash juicebox us med is sponsoring this episode of The Juicebox Podcast and we've been getting our diabetes supplies from us med for yours, 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 it get started today with us med this episode of The Juicebox Podcast is sponsored by the ever sent CGM and implantable six month sensor is what you get with ever since. But you get so much more exceptional and consistent accuracy over six months, and distinct on body vibe alerts when you're higher low on body vibe alerts. You don't even know what that means. Do you ever since cgm.com/juicebox Go find out. Hello, Scott.
James 2:33
And thank you for inviting me to join you. My name is James Gafford. I'm a in type one diabetic for not quite 46 years now this is today's the 29th of February, happy Leap Day, by the way. In 2024 by I was diagnosed on May 8 1978. And there's a story that surrounds that our mutual friend Stephen Woodward was the one who suggested I might be an interesting guest for you. And it has to do particularly with that story about how I came to be part of this. I don't know community is one word that comes to mind. Arcade is another one that comes to mind. It's how I got stuck here. Basketball is another one that comes to mind. You know, I mean? There's lots of ways you can frame the whole experience of being type one. But for me, how it got started was I was Midshipman at the United States Naval Academy class in 1978. And was 30 days from graduating the day I was diagnosed. Had that not happened I was headed, I would have been on June 7 1978 It was commissioned as an ensign in the United States Navy, I want to go on in relatively short order to nuclear propulsion school and become ventually. Who knows what would have happened to what the details were because the A they didn't and and be, you know, there's no predicting if there's one thing we know about this, this particular affliction, it's that in a lot of ways, there's no no predicting what's going to happen today or tomorrow, or, or a week from now, let alone a year or 10 years now. But what we do know is that it is we couldn't have had this conversation 100 years ago, because at that point in time, nobody lasted 26 years with this because it was a fatal disease. Relatively short order. And that's not the truth today. So that's part of why I'm here. And figuring that out on for myself has been an adventure. And now
Scott Benner 4:34
I bet well, how old were you in 78? Like 2021
Speaker 1 4:38
I was 22 years and 44 days and about six and a half hours old. I think not that I was counting. Not counting really, really close.
Scott Benner 4:47
So you were 22 and you were diagnosed in 78. But yeah, did you always want to be in the Navy?
Speaker 1 4:53
Well, what I wanted to be was an astronaut. I mean, I just that was hands down my thing I was gonna do and So there's a chain of reasoning that goes along with that, that starts with an astronaut's or are mostly ex military test pilots, ex military test pilots, or military pilots or military officers or are became officers some way, the most prestigious way to do that is go to a service academy. I'm thinking Air Force Academy, and I have an older brother, who was a career NCO in the Marine Corps who called me one day and said, nobody in our family is going to Air Force you're going to Navy. So that was the inspiration. And I went through the whole application process and received an appointment started in the summer of 1974, after I graduated high school, and actually haven't had to start wearing glasses, my, my sophomore year, my youngster year, which, at that point in time, the requirements were such that that would have limited me from pilot training. But at this point, I'm far enough into the whole experience of being a Navy guy, and being dedicated to it and wanting wanting to finish certainly, and go ahead and be commissioned. So I'm starting to think well, what's what are interesting or productive and, and prestigious things I can do and nuclear propulsion was a big deal at the time still is. So that seemed to be the way to go. And I was I was, was an aerospace. I was actually a double engineering major. I finished all the requirements and received a degree in aerospace engineering also finished all the requirements for systems engineering degree the damn they wouldn't they wouldn't give me two degrees. I was I'm so pissed about that.
Scott Benner 6:27
I was gonna say like, did you just want to do this or were you good at it? But those are some degrees that would tell me you'd be great at it. Yeah, I guess most people wouldn't realize but they're more naval pilots than pilots in any other branch the military right. If you take insulin or sulfonylureas you are at risk for your blood sugar going too low. You need a safety net when it matters most. Be ready with G voc hypo pen. My daughter carries G voc hypo pen everywhere she goes, because it's a ready to use rescue pen for treating very low blood sugar and people with diabetes ages two and above that I trust. Low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily, G vo Capo pen can be administered in two simple steps even by yourself in certain situations. Show those around you where you store Chivo Capo pen and how to use it. They need to know how to use G Bo Capo pen before an emergency situation happens. Learn more about why G Bo Capo pen is in Ardens diabetes toolkit at G voc glucagon.com/juicebox. G voc 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 insulinoma visit G voc glucagon.com/risk For safety information that I don't
Speaker 1 7:52
know. And I suspect probably the Air Force has got more mainly because that's that's principally what they do with the Navy buys airplanes, but they also drive ships and submarines and, and a bunch of other stuff. So I can't give you statistics on that. But they do have a lot of pilots and and they do crazy things like like coming in land on a 300 foot long aircraft carrier deck and, you know, so so it's it's an interesting life. I know a lot of guys went slowly through I still stay in touch with who that was part of their careers. And as it happened, as I say that was all that was all in the future. That was all the path ahead of me. And on this eighth of May 1978. Suddenly, that path was no longer available. There was a barrier down in front of it. And I was going a different direction. Do they
Scott Benner 8:40
discharge you? Or do they just put you into a different room? Oh, no,
Speaker 1 8:44
yeah, they they discharged me what happened was I graduated and got my engineering degree and they received an honorable discharge for medical reasons from the service, and Naval Academy, midshipmen Air Force and Army Cadets are active duty personnel. So though this was a medical discharge from an active duty position. One of the interesting fallout from that in the long run is that it makes me eligible for medical care from the Veterans Administration. And that actually is literally where I get all of my medical care these days. Oh, wow. And there's a story about how I got into that too, because for a long time, I didn't think I was eligible for it. But it turned out I was and the VA action classes my type one diabetes as a service connected disability. So one of the, you know, little bullet points that I have on my my talking list here is for anybody who is a type one diabetic who was active duty at the time they were diagnosed to the best of mine, and I'm not I'm not an authority on this, but I am an example. And so and it's certainly a precedent, and I know that there are a great many people at the VA who received their treatment under this general You guys have what's called a service connected disability, we think in terms generally are things like people who get limbs blown off in, in a minefield, things like that. But the the general description that goes along with that, or the general category is a little bit broader. It really means any anything that happens to you medically, while you're active duty, causes you to then become no longer eligible to serve. for medical reasons, you get to discharge, you have to go through an application process, and they have to approve you, but it's a it's a kind of a one way ratchet operation where once you get approved, you're there, you're never going to lose that that particular disability rating. So interesting.
Scott Benner 10:41
I wonder why I've always wondered why you're not the first military person I've spoken to who's been diagnosed, like during service? Why would they not take quality people and just move them into a more? I don't know, like branch where you wouldn't have to pick up a gun, I get the idea that we're all supposed to be able to fight. But that's actually
Speaker 1 10:59
that's actually really an excellent question. And so part of the answer to that is timing. You got to consider the the this is 46 years ago, where that happened today. I think it's not unlikely that the US government certainly has an interest once they've spent Yeah, all the money for education for four years. What is the one of the equivalent one of the better for your educational institutions in the world, and they spent a considerable amount of money on your education on on your military training and and part of the requirement once you graduate is that you have a service, you have an obligation to serve for it vary somewhat depending on what you do. But typically, it's on the order of about minimum service obligation of about five years to pay back that investment to the government. And you know, it's a win win all the way around, as are these is supposed to be so when when a circumstance like this happens is there's a way to keep someone on active duty out of what we in the Navy would call a line officer role than they do. And at the time I graduated, I had a classmate who was graduated with type two diabetes, they conditioned him into the Supply Corps. But with type one at that time, we did not have the tools to manage it in a way. Yeah, it certainly weren't CGM. So imagine now, middle of the night, the the mid watch midnight to 4am on the bridge of 60,000 time missile cruiser out in the middle of the ocean, and the officer of the deck is a type one diabetes, and suddenly he's having a blood sugar crash. And there's other emergent circumstances that that pop up. That's just that's like a perfect that's like adding to a perfect storm. Oh, yeah.
Scott Benner 12:34
No, I mean, I take your point on that. But I don't know why you can't be an engineer in an office somewhere back in like Virginia, like making decisions about you know,
Speaker 1 12:42
that's that's a that's an that's an entirely valid point. And but the policy at the time was the policy. And his problem, I believe it's evolved since then there was a young man who graduated, just this last summer, the class of 2023, who was blind, he had a congenital problem with his, with his retinas. That wasn't was undiagnosed until right before his senior year, but they let him go ahead and finish and graduate. And then he had went through a similar from what I read about him, he went through a similar set of circumstances like the graduated, got his degree, and then got a medical discharge and the service. So in my case, I'm grateful that they allowed me to go ahead and finish in 30 days at that point, I'm, you know, I'm like one foot from the finish line. So would have been adding insult to injury, I think to say no, but
Scott Benner 13:30
what happens then to you like, I mean, 22 years old, you've got a path, you've been on it for quite some time, there are a lot of big goals and dreams, and there, none of them are gonna happen now. And so psychologically, do you fall apart? Or do you pivot? How do you handle that pressure?
Speaker 1 13:47
That's another good question. And for me, personally, I can look back and I have memories of that. Being in a hospital bed and pretty much not being able to sleep an entire night with tears coming down my eyes and then having it eventually being so exhausted that it did fall asleep for a few hours. And when I woke up having this I don't know quite how to describe this sense that okay, I didn't plan this I didn't pick this is horrible. Somehow I gotta go forward. So I started looking around and asking questions that summer after I got home. After graduation, I spent the summer traveling around the country on job interviews, and I got I think I had nine offers a lot of going out to Southern California to the Los Angeles area and went to work in the aerospace industry. I started my my first job was working on the on the space shuttle program and this was about two and a half years he said he's, you know, you have a two and a half years before the first race on law. So I was actually part of that program. As a as a civilian as you know, as a as an engineering employee in the large aerospace company that I could do and it also interestingly, working for big company like that they all have medical insurance plans for the employees on care with You're great, you know, I'm just another.on a graph someplace. So I'm not I'm not a big expense for that, as far as taking and at the times, found an endocrinologist and you had a prescription for insulin and it was, was beef, pork insulin, this was even before Yeah, or you Mulan came out. But that was the beginning of my career as an aerospace engineer. I actually refer to myself these days as a recovering aerospace engineer, I stole that line from a friend of mine.
Scott Benner 15:30
Well, I want to hear where it took you. So but first of all, beef and pork. So were you just shooting it once a day? Or twice? Yeah,
Speaker 1 15:37
I believe was once it was once a once a day injection with be Porkins. And so that, you know, I don't go back as far as some of them. People like Steven and our friend, the other one our friends do, who, you know, go back to the days of boiling glass syringes and sharpening needles. And, and, again, that was also the the Parkinson's at the time. But that's where I got started in early 80s, I believe, is when Lily first came out with cumulus right. That was their first recombinant DNA generated insulin, like you
Scott Benner 16:08
did regular and mph at one point as well. Yes, I did. Okay. And then you do that for a long time? I'd imagine I did,
Speaker 1 16:15
I did actually quit for quite a long time. And I actually wasn't part of the VA system initially, either. Because I'd been told I've asked the question, I've been told I wasn't eligible for it. But I don't remember when exactly I got started. But it was about about 20 years later, that was about two decades, as being more or less on my own. Being a support group of one, as I've called myself, I had a really good endocrinologist, actually a really good internist for a long time. You know, looking back and comparing how I managed the disease, then with how I manage it today. I mean, completely different. That's a hard comparison to make. By God was the thinking, Well, what I was thinking was was the best that I had available.
Scott Benner 16:59
Sure, no, I mean, we talked about it a lot. But it's, I mean, obviously, in this lifetime, we've seen some significant changes both in the insulin, the delivery methods and the measurements, you know, and the way you can see it, and how it's changed things is incredible, because I'm assuming you're on exchange died at one point you were probably eating at certain times. And another point in your life, certain amounts are right, they gave you the food chart and told you that one star
Speaker 1 17:25
probably was, yeah, I got all that information. But okay, the real truth of the matter is, you know, there were days where it whatever I ate, and I've, and I'd feel crazy, and I maybe I need to take more insulin, and there were days when I had had crashes. And there was, there was no, there was just no way to see what was going on. And I may have I remember getting my first finger stick meter somewhere in the in the mid 80s. And that was certainly a game changer. But by itself, it didn't change the long term aspects really, because okay, I can take a finger stick Oh, I'm, I'm really high right now, probably probably should take some more insulin, like, take bigger stick and all I'm really low right now. Probably should eat some ice cream, you know. And, but that's not a management, that's not a management scheme. That's, that's not a
Scott Benner 18:12
versions of not having a seizure and not being too high. So yeah, it's not real value for your health. And over time,
Speaker 1 18:20
I mean, I had more than one experience where I had a hypoglycemic crash bad enough to take me to an emergency room, I had that I did that five or six times,
Scott Benner 18:29
okay? Are you with somebody in your 20s dating or married or anything like that? On your own now,
Speaker 1 18:36
and again, I'd have girlfriends and seemed to have an affinity for nurses because they had a really good, they were really good at getting me up in the middle of the night, in orange juice down me things like that. But I've been married twice. Those are both long stories. The more recent one that was very amicable separation and divorce about two and a half years ago. And she and I still tend to stay in touch. We're still good friends. She's an RN, and she had a long history as an RN of working, you know, a foreigners in hospital and then she later went back and got a PhD in nursing research. So she she's a smart cookie. And one of her comments after knowing me for a while and us being together for a while, she said I had no idea what a roller coaster this this thing could be. Yeah. And this is this was from somebody who's a medical professional. Yeah.
Scott Benner 19:22
Oh, James, I, I'm in the middle of a series right now a couple of them. But I'm in the middle of one series. Now we're, we're medical professionals are coming on, and they're speaking anonymously. And they'll just you don't know who they are. And their names are being changed, though. I've heard so many different things now. But one thing that sticks in my head is that an RN with type one told me I'd be safer having a seizure in your living room than in my emergency room. Right? And I was like, wow, that's really something you know,
Speaker 1 19:50
I believe it. So, for me, personally, I mean, I didn't actually get connected up with the VA until the late 90s. And that was at the level In the VA Center in southern California in the Inland Empire, one of the things I have this is a little bit of a side note. But one of the things I've discovered this is this is purely anecdotal, purely experiential. I don't have any hard data about this. But I have a strong belief that one of the really good things about the VA is that there are a number of major VA hospitals all across the country that are closely associated with nearby major teaching hospitals. So for example, Loma Linda is Alma, Linda University Medical Center here in San Francisco, it's UCSF, down the peninsula, Palo Alto VA is most connected with Stanford, the synergy that happens there is that the attending physicians at the VA wind up coming from the faculty and staff at the medical school. So there's this win win of getting first rate medical care at the VA, because it's the best doctors who are the teachers who are probably the most knowledgeable who are doing the major supervising. And from the point of view of the medical school. This is like this immense incredible cesspool of disease and afflictions and things that need looking at and care and learning about that the medical students can go there and just pretty much learn as much as they need to Yeah, first experience I had in Loma Linda was this endocrinologist coming into the room and I immediately liked this guy, because he had on a Hawaiian shirt. Now. So the feeling the sense was, here's a guy who understands he's not standing on ceremony he wants, he wants to feel comfortable. And he certainly wants me to feel comfortable that it didn't mean that stages was in the immediate vibe. And behind him like like a row ducklings falling and mother were all these med students in their little white lab coats, and they were there to see and observe. And so that's where I really got this, this, this, this idea, this sense that, that there was this major, mutually beneficial thing going on at the VA, I got nothing but good things to say about the VA, by the way, they they do an incredible job. They're huge. They're a giant bureaucracy there. They were actually one of the pioneers, what's now called medical informatics, computerized medical record keeping, they were one of the first major systems to develop something like that. And they still still use a version that goes back to their the origins of that so so after I'd gotten involved with the VA, and after I moved to the San Francisco Bay Area from Southern California in 2012, I moved my medical care from the Loma Linda center to the San Francisco center. And in 2006, I'm driving north on the 101 here in Marin County, having a really bad hypoglycemic attack, you know, just what again, one of those perfect storm kind of things. I managed to bounce my car off the K Rail at the on the high speed lane, swerved across four lanes of traffic onto an off ramp, not into the grass on the side of the of the off ramp, I managed to get the engine turned off. And then I passed out and sat there. When I finally came to I find him like, groggy. We've all had that experience coming to looking around trying to figure out where I am, I'm gradually realizing what's going on. It's after dark, I get out of the car, I walked 100 yards back up the off ramp just because I don't I'm not sure where I am. But I had to walk that far to look up at the sign right now. I know it's all off. I call 911 A very nice, very nice, very warm, very, very concerned lady female CHP officer shows up and might decide to my car driver side of my car is all dented and Dang. And was enough in this day and age where that totaled the car. The good news was I wasn't physically injured other than the the the, you know, the immediate short term effects of the of the blood sugar crash. Car had to go to the car graveyard. And the CHP officer looks at me, she says, Now, if you want I can write you a police report. And what she was she couldn't say this explicitly, I'm sure but what she was telling me was, you don't want me to write a police report because if you do, then then you wind up having to go get your face reviewed at the DMV and blah, blah, blah. But since there was no physical injuries, and since there's only one vehicle involved, if they're if they've been more than one vehicle or they've been injured a physical injury, she would have been required to write. But she gave me that choice. And I very, I said thank you very much. I don't think that'll be necessary. We got a tow truck there got the car take care of but this started a point in my thinking, where this is where this brace came into my head about being a support group of one and I'm thinking to myself, I need to find some some help and some support for this because that at that point that was three decades almost of that was 2006. So that was that was a 30 Sorry. It's damn near 30 years. Yeah, yeah, that's that's 20 years in Yeah. So I started looking around. I'm thinking well here. Goodness gracious. I live in Marin County, California. There's a support group here for toenail fungus. You know, I mean, there are there probably is that's it. Got it? Yeah, and get and come to find out there really wasn't really wasn't any type one. There was one at Marine General Hospital that I found out about No, no, he had to be in their system in order not to have to pay a copay not to have to pay a fee to come and attend the meeting. So and it was 35 bucks. I remember this because I got there on a third Wednesday or Thursday evening, whatever it was, walked into this meeting room, which is empty, I sit down. And about 10 minutes after it's posted, this woman comes rushing, and she's a little frantic. And she's, well, the the nurse who was supposed to facilitate this, something had happened. And and so this woman was an LCSW, who had been tasked to go go facilitate the type one diabetes route meeting. And she but turned out she didn't know anything at all about type one. So I wound up sitting there for about half hour, 45 minutes, given her the long elevator speech, given her the initial education about what type one was what it's all about is it's autoimmune disease requires insulin, all this stuff, just like really, wow, that's interesting and asking questions and back and forth. And all the back time, the back of my mind, I'm the only one in the room with her, I kept thinking, I had a check in my pocket for this fee. And we got done talking. So I just kind of took the checkout sit on the table and push it across to order. And she looked at the check. And she looked at me and she had this look at kind of a deer in the headlights look in her eyes like was like, Oh my God, I don't want to take your check, but I don't have any choice. And
Scott Benner 26:24
I thought you were gonna say you married her and ruined her life.
Speaker 1 26:30
She was She didn't fall into that category. There are others, too. But in any event, so that was my my experience initially. And I did eventually find a couple of ways to get connected with community. Certainly here in the Bay Area, the biggest ones are organizations like JDRF and d y f that have both in person and online. Zoom has been this a major you know, it's a it's a cultural paradigm now that if one of the very relatively few good things that came out of out of all the COVID I don't want to say hysteria nonsense. But that's a big part of what's in the back of my head is that this is now a thing, culturally so you and I, for example, now can sit down have this conversation me in my living room you in your in your podcast studio. And it doesn't matter where we are in the world. Right now. It's
Scott Benner 27:22
amazing, I would tell you that what you were looking for back then and eventually found. It exists online. Now to the degree that I don't know if it'll I don't think it would ever kill like in person meetups, but it really does fill a gap for people who are not going to get their car and go meet some people. You know what I mean? And it's a big deal. Because you can also be faceless. Like, that's one of the most valuable things that I've seen is the I have a Facebook group. I think at this point, it has like 47,000 members in it. And it gains 150 new members every actually it's less than every four days. 150 new people, but the people who talk the people who have it in them to be, you know, extroverted, or to even ask a question, even when they're really in trouble they can they need to ask question, it's a small portion of people that are able to do that. But the value for the rest of them that are lurking and watching and reading, they would never ask that question on their own, and yet they get the answer. And that's really wonderful. And they still feel supported, even though the other people there don't know they exist. I didn't know that would happen. I mean, James, you don't know me. But I started the podcast podcast was popular. Somebody at some point said we need a private Facebook group to talk about the podcast. And I did not want that. Like I didn't want any part of being on Facebook and running a group. It all sounded horrible to me. But that group's only gosh, is it maybe four years old? And it's almost got 50,000 People at it? Yeah, remember? Yeah, it just it's crazy. Like it was not a thing I set out to do like the podcast the way the podcast is going. This I did on purpose that like I just happen, you know, so it's great. And I didn't and by the way, James, I didn't know it because of all the weird things and you know, it doesn't get said a lot but of all the weird things. I don't know if diabetes. I don't actually know the personal internal drive of somebody who might need community for that. So it was a blind spot for me. today's podcast is sponsored by the ever since CGM. Boasting a six month sensor. The ever sent CGM offers you these key advantages distinct on body vibe alerts when higher low, a consistent and exceptional accuracy over a six month period. And you only need two sensors per year. No longer will you have to carry your CGM supplies with you. You won't have to be concerned about your adhesive not lasting, accidentally knocking off a sensor or wasting a sensor when you have to replace your transmitter. That's right. There's no more weekly Your bi weekly hassles of sensor changes. Not the ever since CGM. It's implantable and it's accurate ever since cgm.com/juicebox. The ever since CGM is the first and only long term CGM ever since sits comfortably right under the skin and your upper arm and it lasts way longer than any other CGM sensor. Never again will you have to worry about your sensor falling off before the end of its life. So if you want an incredibly accurate CGM that can't get knocked off and won't fall off. You're looking for the ever since CGM. Ever since cgm.com/juicebox. I used to hate ordering my daughter's diabetes supplies, and 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/juice box or call 888721151 for us med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omni pod dash, the number one fastest growing tandem distributor nationwide, the number one rated distributor index com 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 G seven. They accept Medicare nationwide and over 800 private insurers find out why us med has an A plus rating with the Better Business Bureau at us med.com/juice box or just call them at 888-721-1514 get started right now. And you'll be getting your supplies the same way we do kind
Speaker 1 32:05
of pick up all kinds of jump off America to go on that. Once I got into this mode of thinking that I've been I've been this the support group of one now for 30 odd years. Time for me not to be a be part of a larger support system. And so one of the things I wound up doing was going back through my resources at the VA. And it turns out again, you know, the VA has gotten mixed messages broadcast and video over the over the years and you give me here and you know, anybody who has any knowledge or subject or opinions about it probably has heard horror stories on the news about somebody having to wait six months to get a, you know, a cardiac appointment, and they die in the emails and stuff like that doesn't happen. Yeah, it does. But I gotta say, my experience, again, has been remarkable has been I got nothing bad thing, I got no bad things at all to say about the VA. And a lot of very good things to say they do an incredible job in a very, very challenging and I'm not just talking about type one, or even diet, type two diabetes, in general, everything about everything that they manage, which is pretty much the entire spectrum of of medical issues that that any medical system in the world, anywhere in the world has to handle in this day and age. And that includes mental health services. So one of the things I wound up doing was getting involved with a program at the San Francisco VA, that makes use of a psychological modality called Cognitive Behavioral Therapy or CBT. And that for me personally, both generally in my life, but But in particular, with regards to managing the diabetes has been a huge, huge benefit. And it's just it's basically a technique that it's a learned technique of dealing with feelings, emotions, and thoughts that are troubling, in a way where you make deliberate conscious choices about how you're going to how you're going to react to I can't stop a thought or a feeling from coming into the back of my head. But I can make a conscious choice about how I'm going to react to that. And over time it becomes a learn to practice thing and it gets into the equivalent of muscle memory or I don't even have to sit go through the chart down and sit and write down okay, what was the bad thought? What's what's a veteran thought or a true thought that might replace what's false about that what's true what's really true? How can I know that that there's this learned process you go through but but it's something I do day in day out moment by moment almost sometimes and particularly as much as anything in with regard to type one that involves having a way of being able to do something that probably in hindsight was not real smart thing to do like eat a whole carton of ice cream just because I want to and then later being able to say you know what, that was really dumb but yes, I know better and, but also more I can do I can do better. To our eyes, can I do do better because I make a conscious choice about this. So this has been a mechanism that, for me has been extraordinarily valuable.
Scott Benner 35:06
And you only know about it because of the VA involvement. Exactly. Yeah, that's correct. Right. So they took a thing that they were developing for people for combat reasons, probably, they developed this thing for reasons probably people with PTSD and stuff like that, right. And then VA, strictly
Speaker 1 35:20
speaking, the VA didn't develop it. It's been a technique. It's been around for a long time. But but there were practices. One practitioner in particular at the VA, who adopted a nurse practitioner there who started a program that has become very successful and it's, it's not directly involved with but it's connected to its affiliated or medically, it's in conjunction also with the mental health issues that VA these is probably best known for trying to handle our is PTSD. So a lot of the guys in my, in my CBT group, were also part of PTSD support groups, they're at VA. So this is, again, the these are this is these are areas where the VA is making huge strides in in providing opportunities for and realizing very positive outcomes in the long run. And they do deal a lot with diabetes all I have a suspicion. Again, I don't have any hard data for this, but the population in general in the world today something what is it one? And I forget how many people are diabetic? What
Scott Benner 36:24
when you count type ones and type twos together? It looks like something
Speaker 1 36:28
like one in 20. Right? Yeah. And and oh, the people who are diabetic, one in 20 of those are type ones, the 19 out of 20 are, these are very rough, round numbers. But it's like 5% of diabetics are type 190 5% of diabetics, type two.
Scott Benner 36:44
Well, a number of years ago, there was a big push to get people to realize when they were pre diabetic, and I've kind of haven't heard as much about it at this point. I think it did its job that everybody knows, hey, my one C six, it shouldn't be you know what I mean? Like that kind of thing. But they were I mean, I forget the numbers there. But the staggering. There were staggering numbers about people who they thought had pre diabetes just based on the data that they could see. Yeah,
Speaker 1 37:08
yeah. So point being that at the VA, they clearly deal with a lot of adult diabetes, type two diabetes. Yeah, I don't think they have as large a percentage of diabetics that are type one at the VA for the simple reason that you don't get VA care unless you're previously active duty or lesser previously in the military. And if you're type one diabetic to begin with, you're not going to get into the military. That's a that's a medical exclusion. If you become type one, while you're in the military, then you're going to get discharged. Or at least in my case, the what you were talking about earlier about maybe shutting you off into a job that's,
Scott Benner 37:45
like combat related. Exactly.
Speaker 1 37:46
Yeah, something like that. There may be more considerations like these days, but still, I gotta believe that that probably skews the that percentage within the population that are treated medically at the VA, for service connected disability, so much smaller percentage of diabetics, there are type one that are the type of diabetics in the in the, in the population of the world as a whole. So in that sense, that's another reason why I'm very grateful to the VA because, in a lot of ways, I'm, I'm this outlier, I'm like this, this came out of left field. Yeah, I have type one diabetes, but look where I was when it happened. And look, what, what, how, what path I followed afterwards. That's where I wound up where I am today, the in 2007, my CDE at the VA, who are who? She's a nurse, she also happens to be a type one diabetic. And oddly, since she's not a veteran, she doesn't get care. At the VA. She gets it through Kaiser or something. But she comes running down the hallway with a magazine me Have you seen this? Have you seen this? And it was a magazine? ad for the Dexcom? System? Seven? I'm not sure I was the first I believe I was the first but if I wasn't, I was one of the very first patients ever at the VA to use the Dexcom system seven in 2007. And that was a game changer. Oh
Scott Benner 39:06
yeah. So that'll confuse people who are in or newer diagnosed. Right now the Dexcom G seven is the latest version, right? When they came out, they called it the it was the Dexcom seven and they call it the seven plus, and then all of a sudden, they call
Speaker 1 39:22
the system seven, right? And then they went to G four eventually, it had a different form factor than I mean, eventually they move to the G four and then the G five, which are the ones that are are the same form factors as the G six G G seven is the new one. That's that's the single insertion, right? Integrated transmitter sensor. Yeah. So I got I got started fairly early with the water now become the conventional CGM sensors at the VA. That's
Scott Benner 39:53
something that's great. Yeah, I mean, you've had a great experience and they you know, it's like anything else online. You're gonna hear bad things about big systems because some people are gonna have bad, you know, interactions and then that's going to be their report. Also, I think people who have bad times are generally more vociferous than people who you know, have good. The
Speaker 1 40:11
analogy I use is that anytime an airliner crashes and 500 people are killed all that's headline news, and it's on the news for six days, you have never ever in your life heard a news broadcast and said, Good evening, ladies, gentlemen, they 35,462 commercial airline flights took off and landed safely with no one being injured in any way, shape or form.
Scott Benner 40:31
It's not exactly how you will never hear that that
Unknown Speaker 40:34
headline, it bleeds it leads right now.
Scott Benner 40:36
It's just how it goes, right? I mean, I've heard what you said, like, I've heard enough news stories about somebody involved with the VA that got screwed over or something like that, or they died or had an event that again, it's news. So that's why you hear about it. Yeah,
Speaker 1 40:48
exactly. And I don't believe it's typical. And I mean, again, my experience is anecdotal. I also see and talk to other people, or their experiences, we get really first rate medical texts on.
Scott Benner 41:03
I mean, honestly, it's not just excellent. But how long? Were you in the Naval Academy for as a life partner? Yeah, for three or four years of effort you getting paid back for the next 40 years? That's not bad. For sure.
Speaker 1 41:14
There was a time when I thought in terms of who do how do I feel about the US taxpayers paying for my medical care? And then I realized, wait a minute, I'm a taxpayer too, so I'm just gonna count on my on my accounting sheet. Everything goes to federal taxes. That's my medical
Scott Benner 41:29
back to your to your diabetes. So at what point do you find CGM pretty quickly? What's your experience having so many decades without it and then having one of the first CGM is is it an eye opening moment for you? Does it drastically change how you care for yourself? What happened in there?
Speaker 1 41:47
It's eye opening, but it's eye opening in a gradual way. Yeah, it's there's this if you're a tech, if you're a tech, geeky type of person at all, which I certainly am. And anytime you get a new toy, you're like, Ooh, this is so cool. And so that first year that I had that system seven, I think my agency dropped from over seven to the first one I had after that was like, 5.80.
Scott Benner 42:11
Wow, why, what, what changed?
Speaker 1 42:14
What changed was, I could see these numbers, I could see this graph, and see that if I did this, wow, it does that. And so if I don't do this, or do something a little different, it doesn't do that it does this. And and that was fascinating, A and B, I defy you to ever find a type one diabetic, who's had a serious hypoglycemic episode and says they enjoyed it.
Scott Benner 42:38
Avoiding them is also a big part of it in technology, that's for sure. It's sleep, too, right, like sounder sleep?
Unknown Speaker 42:43
Well,
Scott Benner 42:45
we're never going away. Yeah,
Speaker 1 42:47
it's, again, things are gradual. But it definitely was an eye opener. And it was the beginning of, of a newer part of my path and my journey to where I am today, which is I'm currently use for the very first time my wife ever started using a pump, in 2018, was when the Medtronic 670 G, AI D system came on the market that was really the first hybrid closed loop system to make the market. And we I've been talking with my endo and my CD at the VA. Does it make sense to go to a pump? Well, we got this new thing coming. So let's kind of wait until that that whole new book, hybrid post loops, and then think about making the jump. And we did and again, that was a major improvement in in my overall error. Now, the the flip side of that coin is that the both that first one of yours, you're talking about being MDI and clueless, basically, you know, gradually, slowly over time, I lose weight, I lose, being in physical shape gradually, to a degree. These things are things I'm not happy about, necessarily, but they're also things that partly because of what I was talking about earlier with the CBT, I'm able to look at and say, Okay, I maybe I could very arguably have done better. Yes. Is that is that a a true statement? It absolutely is. But so if I didn't do better, should I feel guilty about that? And the answer that is an absolute NO. And I'm able to get there, mainly because I know that however well or poorly I've done I've done by and large, the best I can. And I am already six years almost into this. I'm going to be in Boston in 2028 to get my 50 year gold medal. I
Scott Benner 44:33
want to ask you, do you have any symptoms of long term complications? Not
Speaker 1 44:38
really. The main things I have, at this point at this stage in my in my progress, have gradually developed insulin resistance over time. So my TDD these days is between 80 and 100 units a day, way more insulin than I've seen why to be trained.
Scott Benner 44:54
Let me tell you something, man, I go back to that VA and tell them you want Is that bound or we go vie for weight loss and weight? And do you see how your insulin needs go down? Yeah,
Speaker 1 45:06
well, we're already having that discussion. Good, good. But there's so many GLP one antagonists out there that tell me again, the ones the names in the wild
Scott Benner 45:14
If so, you're only going to qualify for weight, because you're type one, so they won't give you Manjaro. No, but the Manjaro knows for type two right now, it's classified for weight loss as zip bound. And you get a GLP, one with a GI p at the same time,
Speaker 1 45:31
right? You're right. Yeah, yeah. I'm not up to speed on the whole subject, I get lost in the, in the trade names for all the all the drugs, I
Scott Benner 45:40
am two weeks shy of a year on a GLP. I'm 47 pounds lighter today than I was last year. And my daughter who's 20, is taking just a small dose of ozempic right now, once a week, and her insulin needs went down drastically. I had an episode on last week with a mother of a 15 year old who had type one for three years. And her daily insulin needs went from like 70 down to seven.
Speaker 1 46:06
Well, what am I perennial, and this is also that's not just me, the community in general, one of our perennial complaints has been the lag time between the realization of the efficacy or the potential efficacy and then and, and the value of pursuing investigation into the efficacy of different treatment modalities, and how slow it takes. So the all you have in the entire amount has to do with what's called labeling and the FDA approvals, all of which that's kind of one subject. So it's very clear that type one diabetics over a long period of time they develop insulin resistance, which is the principal characteristic type two diabetes. So why wouldn't it make sense to
Scott Benner 46:46
you every year or to from that being reclassified? I think because of the insurance hammering but I'm, I'm gonna tell you something, I don't usually, I guess it's not true. But I don't usually take credit for a lot of things that I do. I am out in front on the GL piece, like I am going to talk about it moving forward. I've taken some crap from some bro science people online who think like, you know, it makes you muscle waist or your bone density goes down, or whatever they thought the first day it came out and one of the big podcasters yelled about it one day or something. If you haven't used it, you don't know what you're talking about. First of all, I can't tell you how many people with type one diabetes are just saying things like 20% reduction in my insulin needs, or I dropped 30 pounds or how about like that voracious hunger that a type one can feel because of the lack of, you know, Amylin, and stuff like that. And now that's gone, and all the value it's bringing, and how about a lot of all that
Speaker 1 47:39
all that is part of where I am right at this moment? Yeah, of course. And so that's part of my next My next step is is pursuing the GOP once you've
Scott Benner 47:46
no idea, James, in just a couple of weeks on it, how much different you'll feel. It's fascinating. I had to adjust my daughter's insulin a week into the first injection. I was
Speaker 1 47:59
always the only thing I'm a little worried about right now is wait a minute, I gotta go back to a whole nother cycle of figuring out insulin doses and carb ratios and Basal setups. So but I've got the tools to do that with too. So
Scott Benner 48:16
yeah, you do. We'll say you you tried 670 G back then. But what are you using right now?
Speaker 1 48:20
Well, I switched from the six, seven D to the 780, late last summer and that was subsequent to being involved in a clinical trial over at Diablo clinical research, right? That use the 780 G but the trial had to do with a new sensor system that Medtronic is coming out with the time they call the DS four sensor it says it's it's Medtronic the answer to the Dexcom G seven and it has just now come out and it's actually available in Europe now. And they call it this in Clara. Okay, so that's it's a single insertion and it for me it works awesome. And, and I had enough time to while I was on the study to get the VA to pony up and send me a six, seven AVG and started some supplies a little bit while or a month or two while I was on the on the study. You know, because type one of the things we have to do we absolutely have to do is you want extra of every sensors, decision sets, insulin you want everything in, in in supply and more than you need. Until you get your next set of refills.
Scott Benner 49:26
It'll definitely be in America soon enough.
Speaker 1 49:28
Yeah, I will. And the results I got were I went from being on the 670 Somewhere in the mid 70. Call it 75% Time and range. Yeah been in the mid to high 80s And that's where I am right now on the with my own 780. But using the slightly older sensor, The Guardian, The
Scott Benner 49:49
Seven ATG. I hear a lot of good things about it actually from people who use it. I
Speaker 1 49:53
also was involved in 2020 20 with a study with Dr. Buckingham. At Stanford testing vetronics, seven day infusion set, I got really good results with that. What I'm using right now is the Medtronic 780 G, The Guardian Force Sensor and the extended were infusion set, which I helped. I was part of the asset. Yeah. Part of part of the cohort, the group that prove that that works. Yeah,
Scott Benner 50:21
I'm looking here at mini med seven. ATG. This is a Europe system with a simpler a sync sensor will be available in Europe via limited release in spring 2024. Yeah, you got a little ways to get it over to America, then probably,
Speaker 1 50:35
you know what it'll take as long as it takes. But when it gets here, it'll be another major game changer. It's yeah, where I am right now is I can change my entire infusion set in my, in my sensors system in about 10 or 15 minutes at most. Yeah, that's not counting having to recharge the transmitter, which will not be the case with a simpler sensor once it's
Scott Benner 50:56
been disposable, like the libre or the Dexcom. I would say James, I'm sorry. Medtronic is the sponsor of the podcast, as is Dexcom. And so I should just say that, ya know, I think this is terrific. It's it took them a little while, but they're, they're coming back pretty strong. Yeah, it's
Speaker 1 51:12
pretty clear that what Medtronic is having with the supplier is not just the newest sensor for there, they've always kind of been in this we're using our own sensor we're not integrating with with Dexcom. But it's pretty clear that what they're doing with some player is going head to head with the Dexcom G seven. Oh, for sure. In both the pump integrated, and then the standalone markets,
Scott Benner 51:34
yeah, they're just trying to drive people to their pump to they're not going to they're never going to you know, be a situation where you can hook up a 780 G to A libre, you know, for example,
Speaker 1 51:46
which actually begs kind of begs the question of this. Another popular topic in the community is interoperability between devices and the whole reason for the existence of things like title, which I'm a huge fan of, and I've met and, and listened to Howard luck talk on a couple of occasions and had a chance, actually a diabetes camp last summer up in Bearskin meadow to chat with him a little bit very cool guy. He's been on the show. Yeah, yeah. The whole idea that these devices should all exist in their maybe their separate little niches and it should be possible. This is this is my rant. It should be possible to go out and buy whatever palm, whatever sensor, whatever system you want, that works for you. And what works for you includes things like how well does the adhesive protect your skin, you know, so if the if Medtronic sensor makes you get alternative red, but Dexcom doesn't, you got to be able to use the Dexcom sensor with Medtronic pump frame.
Scott Benner 52:44
Well discuss Yeah, Medtronic, like they've got a pretty big market share. So I think they think, I mean, if I'm in their head, I think I can make people use our pump. As long as we come along and get a CGM, by the way they they get screwed. Here's one thing and I listen, I've made fun of Medtronic over the years for that, you know, for the Harpoon, you know, and everything, but they were first. You did it like so. Thank you. You don't I mean, they're gonna first Yeah, the
Speaker 1 53:09
670 was for all the stuff you can criticize about it. It was a game changer.
Scott Benner 53:15
Yeah. Right. And, you know, first one is gonna get picked by the shark. So like, Yeah, I mean, Fair's fair. But it also took them. I mean, in my opinion, it took a little long to get to this simpler thing. Like, it's, you know, I don't know what happened. You
Speaker 1 53:29
know, I, none of us have direct insight into the vagaries of of getting FDA approvals and what you have to do, moment by moment, by DPL, to get get approvals. And Elijah's and I think that as a society, we're, we're way too deep into that. That's just my personal opinion too deep into I'm sorry, into, the things are over regulated. Yeah. Oh, and general, but specifically, when it comes to, you know, if there's something that's available, that's going to be helpful, that's going to make my life better, I'd be able to make an informed purchase decision, you know, sure. Talk with a doctor or with somebody with a practitioner, a professional practitioner who is knowledgeable on the subject, and it can give good advice.
Scott Benner 54:16
Well, go ahead and find one of them. James,
Speaker 1 54:19
why don't you have a couple you actually have a couple? at the VA, there's plenty out there. The problem is finding a man also, this is another popular topic of conversation, but I you know, I'm, I'm, I'm depressed because I can't my doctor doesn't appear to be listening to me. Fire the
Scott Benner 54:38
doctor. Yeah. Now I know it's hard to get people to move on to different practitioner. Also, some people live in places where there's just no options. Like some people are stuck with what they're stuck with. But I take your point. Yeah. And
Speaker 1 54:50
again, the there's no good excuse in this day and age why they're stuck in it not because of their choice or because of anything that's negative about them that stuck in there. that choice, because there's only one little hospital or clinic nearby. But we live in a world where, like we've talked earlier, this connectivity exists in a way, and functions in a way where it's now possible to know. And if you don't realize that if you're not aware of that, then then you have no pathway out of that this sense of depression of I don't have any other choices. But wait a minute, maybe I do. Okay, well, maybe maybe I need to think about going out and making some searches on here and talking to people and getting into the group on on Facebook and asking questions and finding, finding a way and Oh, who's the other side of the country? But who's on my insurance plan? And who I can talk to remotely?
Scott Benner 55:42
Yeah, but it's a lot. It's a work. I think some people are overwhelmed, too. And then I wouldn't be surprised you get trapped in that cycle of like, this isn't going well, I've got no hope. I don't know what to do. They don't know what to tell me. My health is slipping backwards, what am I gonna go find a guy across? It's hard, you know. So I've done I mean, I put up a list of endos that people like have good success with, I try to keep an active list on my website of that. But still, even that is like, I can't be out there every day reminding somebody, Hey, there's a list here. Like it's just to never ending battle to keep the information in front of people to keep them motivated to try to do those things that are difficult, especially when they're getting up in the morning and going to work and raising kids. And it's a tough, tough slog. You know, it really is, what else is on that list of years over there.
Speaker 1 56:29
I got to thank you. For one thing. I think I mentioned I started listening to you a while back to some of your pro series. And there was one discussion in there about Pre-Bolus Saying that, when I listened to that, I mean, I heard the term and and yeah, it kind of makes sense. And it's one thing to hear something intellectually, and think about it and realize that makes it but it's another thing to kind of really get it kind of ingrained in you. And I started doing that. And that has made a huge improvement. And not not in not overshooting you know by Bolus, right when I'm meeting 80 grams of carbohydrates that I'm gonna, I'm gonna be up over 200 Yeah, if I Bolus 20 minutes before I go up some but not a lot. Yeah. And that's been here. So thank you for that. Well,
Scott Benner 57:13
first of all, it's my pleasure. But secondly, you're 46 years with diabetes. And I'm the first time somebody said Pre-Bolus to you? No,
Speaker 1 57:19
no, I it's not that I've never heard the term. It's that it's one thing to hear a concept. And it's another thing to internalize it.
Scott Benner 57:26
So you think that listening to the podcast made you go alright, I'll try it. Yeah, yeah. Okay. I think so.
Speaker 1 57:33
And that was you and I can't remember the woman you were just got through it to the doctor who you.
Scott Benner 57:36
She's a CD. She's also got type one. Yeah, right. Right. Right.
Speaker 1 57:40
So another thing I'm kind of on my list here has to do with the general subject. And I've mentioned a couple of my own participation in this but get involved with this is something I would recommend to anybody who's type one, who is in the process of, of developing and pressing in the direction of more confidence about their ability to manage the disease. First of all, I heard a lecture by a woman named Jessica Bernstein in 2007, or 2008. She's a psychologist over nice Bay, had been type one since she was two or three years old. And she made a point about the word control. And how that steeped in that word is this, this inference, this idea of guilt burden. If I'm not in good control, it's because I'm doing something wrong. And so I'm therefore guilty. You said, let's throw out the word control. Let's let's, because there are times there is we all know, there are times then circumstances where things go haywire. And it's not because of anything I did. That's, that's bad or wrong. It's just that that's, that's the nature of the of the disease, let's substitute the word management. So in my own management of, of this disease, you get to a point where you get a little bit more confident about it. And for me, that took 40 years, to get to that point, really, really, frankly, there's always more to learn. There's always more to know, there's always new epiphanies to come to and in a way that's kind of as as an engineer and as a as kind of a geeky guy that, to me is fascinating. And fun. I'm my own guinea pig. And I get to see the sometimes some days things work. Well, sometimes they don't. But on the days where things work, well I get to say to myself, damn, I'm really getting better at this seems to
Scott Benner 59:28
ever wonder if you were diagnosed with this technology, how quickly you would have, like, come to that, because I'm, I mean, that's a long time.
Speaker 1 59:38
I don't know the answer to that. No, I know. I'd like to believe that it would be been a lot quicker because of the presence of technology. But I'm not a humble person. I don't try to be but at the same time, I try to be as realistic as I can. Some days it works. Some days it doesn't. About reflecting on my own Well, you know, my own limitations as a human, my own and my abilities. And so the short answer to your question is I'd like to believe yes. That had had I've been diagnosed, and this whole timeframe for me move forward 30 or 40 years. And yeah, I would write today I'd be where I am, but in a lot shorter, quit anatomical order. Okay, great. But at this point, in a way, that doesn't matter, because I am where I am right now. And I'm not planning on going anywhere. I'm not planning on, you know, there's going to be there's going to be a point in time in the not terribly distant future, where there are people alive who are type one diabetics who have been that for over a century, as part of that is because lifespans in general are increasing. And part of that is because the ability to survive and manage type one, diabetes for long periods of time has been increasing and improving. And we keep hearing, you know, there's a standard trope in the community about heroes five years away, and this year has been five years away for
Scott Benner 1:00:59
780 90 years.
Speaker 1 1:01:04
Today, the cure is five years, however long somebody's been telling us now, it's not unreasonable to expect that 30 years from now the cure is still going to be five years away. Okay. Great. Just take that as a as a given, which means that like I say, there are going to be people that are going to pass the century mark, you know, Johnson is going to have to think about what's gold metals and in Platinum metals now they're going to come up with some people are really in metals or something. Yeah.
Scott Benner 1:01:28
Well, have you ever seen somebody with a 75 year metal?
Speaker 1 1:01:31
I haven't, but I've known a couple of people. I know at least one person Jack Rosewall is there's a jack Okay, he's a friend of Stephen dinars. Okay. To amazing and he's, he's obviously I don't know if he has a 75 year medal or not, but I know he's overseeing
Scott Benner 1:01:45
I don't know if they if Lily makes the metal or is it still Lily or did somebody else pick it up?
Speaker 1 1:01:49
Well, Jocelyn Lilina has a metal program in Joslin diabetes Center in Boston has a metal program. I think Jocelyn has a 75 year medal. Okay, I'm planning to get my 50 year metal gold medal there. Again, 20. Good
Scott Benner 1:02:01
for you. When you guys do you talk about people, you know, like how actively Are you friends? Are you text friends? Are you at a meeting once a month, or just people I've met
Speaker 1 1:02:11
we're friends through connections in through diabetes community connection, so it's online, every month, here in the Bay Area. JDRF and dy have both have an online meeting. And dy F also has a couple of has an in person meeting our friend Jack down in the peninsula has both an in person meeting and a an A in a Zoom meeting that he does once a month. So there's a lot of there are a lot of opportunities here in the Bay Area. And by extension, now we get people in, in the Zoom meetings who are from everywhere country, right? Again, that's that connectivity, technology thing that exists today. So it's primarily in that context. I've actually met Steven in person for the first time last summer up at diabetes camp, it's another. So there are a lot of different venues, both online and in person where the community can come together. But those are principally where I know, my diabetes friends, I don't in general know them outside those those spaces.
Scott Benner 1:03:10
Yeah, it's still hard, isn't it? Even with people wearing technology that you can see, it's still not a thing that people run around broadcasting constantly.
Speaker 1 1:03:19
Another one of the vent, or another one of the arenas if you will, but I'm currently immersed in is this being single and looking for the find somebody to date? So kind of for my ideal would be somebody who's type one who over attracted to and who condensed west coast swing
Scott Benner 1:03:39
and gets your engineering might get? Yeah,
Speaker 1 1:03:42
that's the key thing. That's really that's what's so attractive about this whole idea of the community, the very first time I ever walked into a room and sat down where there was a support group meeting. And all I had to say was I'm James, I'm a type one diabetic. Everybody goes, Oh, yeah. And, you know, there's a lot of parallels. There's a lot of I found a lot of interesting parallels between that kind of a setting and what are typically known as 12 Step programs, because there's a way in which it's not the same reason for being there. It's that seems kinda reason for being there. But there's a way in which the dynamic works, which is similar, which is I get to sit here and talk about things, but I wouldn't just necessarily talk in general. But But I but I feel comfortable and safe doing so because everybody's sitting around me here has gone. Oh, yeah. Non Yeah. Oh, yeah. I get that. Oh, yeah. They get it without me even having to explain.
Scott Benner 1:04:32
Right. And even if your experience isn't theirs, they can still make the connection to exactly yeah, to say I see where he's coming from even though I haven't had this experience. Yeah, yeah. No, it's it's valuable. Like I told you earlier. It's valuable in a way that I didn't understand at the beginning. I do very much understand it now.
Speaker 1 1:04:49
Well, and I've I've said before that if I ever met someone just offhand, who had just been diagnosed with type one diabetes, that very, there are two things I'd tell him and I'd insist that they I look me in the eye and and hear and understand. The first one is, this is a century ago, this was the Jetsons today, it is not. It can be managed. That's number one. Number two, you're not alone.
Scott Benner 1:05:13
That's important to know.
Speaker 1 1:05:15
There is a community as both of those. Those are the two single most important things for any newly diagnosed type one diabetic to know and understand.
Scott Benner 1:05:22
No, I agree with you very much, James, I appreciate you coming on and doing this with me. Thank you. This was a pleasure has been mine. We're very You're very kind. It's, it's interesting to hear, by the way, I, I have two possible titles written down for your episode. Almost Ensign. And then I don't know if you're gonna get this even but toe fungus support.
Unknown Speaker 1:05:48
I think the almost Ensign probably is yeah, that's
Scott Benner 1:05:50
where I'm gonna lean. But you'd have to really be listening to hear at one point, you said in the Bay Area, we have support groups or everything like toe fungus support, and you rolled right through it very quickly. And I was like, God,
Speaker 1 1:06:00
but you said that a moment that you did, as you said that everyone? Yeah, I did say. I remember what I said. Oh,
Scott Benner 1:06:08
no, I imagine you do. I'm trying to imagine a person listening going. toe fungus? And when's this gonna come up? Can I ask you if you don't get type one diabetes? Like really looking back at yourself? Honestly, could you have made it through the astronaut program? You think you were a real candidate for that? Yes,
Speaker 1 1:06:26
no. And again, part of that depends on timing it at the time, I had a focus and a dedication. That's really where I wanted to go. And I knew enough about it, I know knew enough at the time. When you're a teenager, you think you know everything when you're graduated from high school, you got the role by the tail, you know, and, and the sad truth is, you don't know why. But you don't know that You Don't Know Jack until you get to, you know, my or your age at least. And then you start to get this, this worry about maybe I don't quite know, Jack, I believe or whatever, then today, the world, that world is different. It's very different in a lot of ways that I'm quite vocal and opinionated about and one of which is I don't think the federal government ought to be involved in race travel at all. I'm huge fan of what Mr. Musk is doing with with SpaceX. And I think that's where the future of space travel is going to be. And if I wind up getting involved in it, personally, I commented in about a year ago in a in an online type one group, I said, I'm going to be the first type Dolan diabetic on Mars. And that was said, partly to elicit a humorous response. But there's a part of me that's actually serious about that. You know, I think that would I that's something I alien landed, sought flying saucer landed on my lawn, and the guy stepped out and said, Would you like a ride? I'd say bye.
Scott Benner 1:07:53
All right on to me and my insulin.
Unknown Speaker 1:07:57
Let me grab my coffee with you.
Scott Benner 1:07:59
I can't think of the name of the episode but I've had a type one on who she actually flies this the International Space Station.
Unknown Speaker 1:08:08
Oh, Haley, Haley spears.
Scott Benner 1:08:10
She's I don't even know if that's her. I can't I may be an Amy
Speaker 1 1:08:14
white headed out. I have a good friend Haley who's a type one. She's chosen fly. And she's a she's one of the backroom flight controllers for the ISS in Houston. And I know her through a program called Space settlement design competition, which is a way which I'm involved with, my younger brother has been involved with for 30 years, which is a program where high school kids get together over a weekend to design a space settlement. And as adults have the job of on one hand cat herding, and on the other hand, making sure they don't run off the rails. Technically,
Scott Benner 1:08:44
can I tell you how crazy it is that that you just said that? That's not the person I've have on. So April Blackwell. She's the NASA attitude determination and control officer, which means she pilots the International Space Station. Okay. I think there are two type ones doing that. That's amazing.
Speaker 1 1:09:00
Well, those are jobs you can do sitting at a control console. Yep. And a Control Center in Houston. And if you suddenly get a blood sugar crash, your hands aren't on a control stick. Right? You're not. You can't be a commercial airline pilot with type one diabetes, because of the risk of having a sudden accident.
Scott Benner 1:09:19
I've had one on they just they just let this guy do it. Really? Yeah. It just happened not that long ago.
Speaker 1 1:09:25
Well, that's recent. That's not historically that's not the case.
Scott Benner 1:09:30
No, historically, it has absolutely not been the case. But what's the
Speaker 1 1:09:34
guy who is also why historically, as a type one diabetic, graduating from the Naval Academy in 1978, I can't be a naval officer.
Scott Benner 1:09:39
Yeah, he so Pietro, it's episode 332. B, I think is the first type one to hold a first class medical certification from the FAA. Wow. Yeah. So he's, uh, I've had him on as well. Well,
Speaker 1 1:09:53
that that is that's history changing because Oh, yeah. In my early adulthood, one of the things I looked at as I've always wanted to get a private pilot's license. And it turned out at that time I had a friend who owned a small plane and he would take me down. When I worked at Rockwell we go down to Long Beach and he put me in the in the ease instructor, he put me in the left seat and plane off circle landed to get off the circle. And he looks at me says you're ready to solo and I said, seriously? He said, Yeah. And so we're driving back to the office and this this like, hammer Bong thought goes off my head, I'm wonder would be diabetic fat. How that how to fix that and turned out the time the answer was it was a mandatory denial for or not anymore. Is the guy anymore. Yeah, that's recent. That's, that's not my experience, my life experiences that was part of that barrier. There's down in front of me that door is coming up now a little bit. Yep. I'm happy. I'm glad. But that part of my life is,
Scott Benner 1:10:47
you know, looking to be a pilot at this point. Yeah. Yeah. To get
Unknown Speaker 1:10:51
to Mars at some point, but I think I can hit your eyes or
Scott Benner 1:10:53
Oren Lieberman. He works at CNN. I forget what I used to be the Israel reporter. I think he does something else now. But he's a he's a guy who, you know, flies his own plane. And, you know, gets around a lot in a small plane. So yeah, I mean, it's obviously things are getting easier if you listen to Petros interview, I forget the the salient details, but he somehow knew somebody at the FAA, and he could kind of start that conversation. I think that's kind of how it got the attention of them. They're like, Oh, CGM don't want
Speaker 1 1:11:25
him that. I'm glad he did that. And that's actually that's another reflection of how the the steady advances in both knowledge and technology have made it possible for those barriers. Were down and solid. And whenever removal to very slowly and very gradually now start coming up, right? I'm glad of that. Yeah, me
Scott Benner 1:11:47
too. No, absolutely. It's these happenstance IID, like connections where you just go, wow, if that person wasn't in that room to say that thing to that they would never know, it would just go on and on like that. But he knew about CGM good pilot, he wanted to be a commercial airline pilot, started a conversation with somebody and it took years and it snowballed into something. So I was in
Speaker 1 1:12:09
Dallas, January, and one of the things I did was meet up with a buddy of mine from Annapolis, who I had not seen in 40 years, but we've been just best friends for a long time. And he's a retired Southwest Airlines pilot, and he doesn't fly anymore because of mandatory retirement age. The FAA says if you're 65, you're no longer you can't be a type one or not. But he works at the Southwest headquarters facilities are Love Field. And so he took me into the facility took me into the flight simulator. And I actually took off and landed a 737 Max eight in this weather without a cover without
Scott Benner 1:12:47
turning rains for you.
Speaker 1 1:12:50
Everybody who I've told that story to says, oh, and the doors didn't fall off. And I said no.
Scott Benner 1:12:56
It's amazing. Well, you've had a life. You certainly haven't. You're still going very strong. How old? Are you?
Unknown Speaker 1:13:00
Oh, I'll be 68 in March. Good for you.
Scott Benner 1:13:03
That's wonderful. All right. Well, listen, James, good luck with everything, not least of which is finding a lady. Yeah.
Unknown Speaker 1:13:11
Scott actually had a question for you. Okay,
Scott Benner 1:13:13
nobody ever,
Speaker 1 1:13:14
I'm gonna put you on the spot a little bit. This is a thought that's been in my mind. You know, I've gotten to know a little bit about you and about your circumstances about how you came to all this, which really has to do with your daughter. Sure, fairly unambiguously. And it's also very clear that for a very long time you have been her pancreas. There's no question about that. And so the question, really, and I don't mean this to be confrontational, but it's this is how my mind works. I see something that I go, I wonder about. And the thing I wonder about is, and this thought has to have occurred to you, and you may have even commented on this or had discussions about this on your podcast, but at some point Arden is she's already an adult. Yes, legally. And at some point, she's got to be in charge all that. And maybe that's already happened, but for you, what's it like to have to consider? You know, I've been this my little girl's pancreas, and she was a baby. Yeah. And at some point, I have to let go that, to me, that's that. I'm thinking, what your thoughts and feelings are about that? And
Scott Benner 1:14:17
of course, well, I'd be happy to tell you. So. First of all, she is she takes care of herself. Now. I don't really have anything to do with it.
Unknown Speaker 1:14:25
Why? Because I noticed you earlier you always she's gonna.
Scott Benner 1:14:28
I do have like, I mean, I didn't contact her. But I there's a thing on my desk that just changes color when her blood sugar. It's called. It's called glucose. And, and it went to it got red, and I thought, oh, that's strange. Like time of day, I didn't expect her to be low around here. And I before you and I started recording, I picked up a piece of software that I have, and I saw that she had just recently Bolus for something and I thought, Oh, she probably just got it a couple of minutes early on her Pre-Bolus And she's fine. She's actually 140 right now. I mean, she and I haven't talked about her diabetes beyond I sent her a text yesterday and said, Hey, I'd bail on this pump site if I was you. And then she did. We didn't actually talk back and forth about it. The last time I've had like, real connection to like telling her about something is, you know, a low in the middle of the night that I woke up for. And, you know, I don't I made sure she was awake. I helped her adjust her settings when she went on the GLP medication. That's not something, you know, it's unfair, I think she could have figured it out. But I just said to her, like, you have to make your insulin sensitivity weaker. You know, and, you know, what is it now, and let's try this. And we just kind of moved it by 10%. Take a look and move it again. Other than that, I don't really have anything to do with it anymore.
Speaker 1 1:15:43
So, and, again, not to be confrontational, not
Scott Benner 1:15:48
by the way, I want you to know, James, this is a very, I hope this doesn't hurt your feelings. This is a very common question from old time type ones to me. Yeah, yeah. Well,
Speaker 1 1:15:57
so. So my way of thinking there's a difference between having been the pancreas and backing off and occasionally having a conversation. There's a difference between that and saying, You know what, I love you, dear, but you're on your own.
Scott Benner 1:16:10
So I kind of subscribe to the idea that people's brains aren't fully formed in their early 20s yet, and I've seen it I've seen a fair amount of research that says that people with type one diabetes benefit from parental support into their mid 20s. Okay, like, and I don't mean, like, hey, Bolus now or like, you know, change your pump. Like, I don't remind her to change her pot. I don't remind her about her CGM. Like she does that on her own. Right? She will come home from college once in a while and look at me and go, Hey, could you do this for a couple of days? Because I need a break. Like that kind of stuff. But you know, or will once in a while when she's home, we'll be in a restaurant, and I'll see your phone come across the table. And she goes, Why don't you get this one, you know, like something like that about her bowl, right. But for the
Speaker 1 1:16:56
most part, she's she's cool with you being with it being a collaboration,
Scott Benner 1:17:01
she doesn't seem to care. Now, I've made significant adjustments along the way I didn't go from like who I was when she was nine to who I was when she was 20. Like in a snap. The way I've always talked about on the podcast, and the way I genuinely believe in it, is that I don't think that teaching someone about their diabetes is any different than teaching someone about anything. Like you don't just scream a bunch of bullet points at them and go now it's your turn. You know, like, it's a very slow transfer of knowledge, I think is a lot of repetition. It's a lot of like, you know, Hey, did you Bolus for this when she was eight? You did? Great. That's great. How much did you do that? sighs I was thinking that much to like, you know, and then you don't talk about it again. Right. And then on and on and online. For years, like it's, it's always been my desire, and my goal to make it a very slow handoff so that she didn't notice that happen. So that didn't feel like at any point, you know, the fulcrum shifted, and all the weight landed on her and
Speaker 1 1:17:58
argued, okay, I understand. And that's actually a good answer the question kind of the way I asked it, have you ever actually talked with her explicitly on that specific topic? Oh,
Scott Benner 1:18:06
yeah, we've talked a couple of times, we've had a number of like, I don't know what you would call them, like, touch point moments along the years, because she was diagnosed when she was two. So and I as a stay at home dad, so I was with her the whole time. There's a couple of times we've sat down and I've said, Hey, I need you to take this more seriously. Or you see this here, like that can't happen, or we don't not Bolus, a blood sugar that goes over this number. Like we don't, we don't sit and that's then the non negotiable. We don't sit and watch a number that high. And so we go along the way. And we've sat down at times, and I've said, Look, you're getting older now. You know, there's, I see this one part of this, you don't seem to understand we need to talk about it, and sat down and we went over this whole thing. There's still things like she's still a kid. Like once in a while. She'll say something that like, like shocks the hell out of you. Like I forgot how to use my glucagon, I had to look into it again, or, you know, like a shot in my head, you forget that. For the most part, she's, it's gone the way I've expected it to go. But it's been a lot of thoughtful, quiet behind the scenes effort from my wife and I, and a lot of her being very receptive along the way, like we've had moments where she doesn't want to hear about it from me or something like that. But we've never had any long drug out like battles about it or anything like that. And I also know window like, I'm not good about it with my wife. Still, I'm still learning. I've only been married for 27 years. But with her when I see the resistance come from her I know to like back up, because nothing long term and good is gonna come from us like battling about one small, unimportant moment, you know what I mean? And so and,
Speaker 1 1:19:42
you know, to be fair, and in the interest of truth in advertising, I'm not apparent so I don't have the direct experience of being in the positions. I can't assert authority in that regard, but I am I count myself A fairly careful observer of how we humans interact. And I really think that, you know, parenting has got to be one of the hardest jobs to do. And one of the things I'm very grateful for in my life, also allied parents, in particular, my mother, who, when I was a young adult, had a, had a conversation with her at one point, and she made a comment on something. She grew up as a single child with a very emotionally abusive mother. And she made the she made it a personal decision, as a young woman, a young, newly married, newly become a mother, Woman Who, and this is in the days long before all the commonplace concepts we have floating around these that we can talk about, about self knowledge, and how to deal with past traumas and how to not pass those on. But she made a conscious decision. And this is the word she used me. She said, this abuse of the younger generation by the older was not going to go any further. So she had no idea. She had a con, she had a picture in mind of what she was going to not do. She don't think she had any specific knowledge about what was the right way or wrong way to implement that. But she had that, that thought and that, that deliberate, basic foundation. And I'm the mind my siblings, or we're the beneficiaries of, and that's one of the things and I
Scott Benner 1:21:20
grew up pretty poorly, like, why wasn't parented well, and you know, like, my wife, either my wife to her credit, because we got married pretty young, like, to her credit, she's like, she would, like help me with like, moments where she's like, You can't do it that way. And here's why. And then, you know, like, and I'm like, oh, like, you know,
Speaker 1 1:21:36
that's how I just gotta gotta be, you gotta be sufficiently receptive. Yeah, don't gotta
Scott Benner 1:21:40
be receptive about it, and like, and then it takes time to build, but by the time the kids were a certain age, like, I pretty much figured out, you know, that kindness pattern and why that was important and everything like that, not that I wasn't unkind. It's just that I grew up in a house where I got yelled at a lot. So if something got out of hand, like I thought to yell to stop it, you know what I mean? Like, that's just where I don't do that anymore for a long time. But when it came down to the diabetes thing, like you have no idea like, I used to write a blog before this. I've been at this like, a long time. And so I wrote a really popular blog, I was around people who all were writing but they had type one. And they'd always say to me, Oh, sure, hurry one sees good now. But what's gonna happen when you're not controlling it anymore? Knows, like, I don't like if you never had a kid like I'm, I'm teaching her at the same time. I'm like, I'm not just like doing it. And we're not talking about it. Yeah, that's a parent's job. Really, James is to say something, say it again, find a different way to say it, say the third time, say to 500th time, all without being annoyed by it or making you upset that you've heard it 500 times. All right, right. I just did that with diabetes. And it's been a very slow handoff. And it's going incredibly well, like I should knock on something. Yeah, but she's in college. And keeping her a one C and a low sixes. Like and here before college, it was in the high mid to high fives. So like, you know, I'm not,
Speaker 1 1:23:04
I don't have anything to complain about.
Scott Benner 1:23:08
Yeah, I don't text her and go, Hey, your blood sugar's 150,
Unknown Speaker 1:23:11
you should do something, what she studies. Oh,
Scott Benner 1:23:14
she's learning how to design clothing. She said, she's an art school, getting a design degree. So it was very interesting. As she was leaving high school, she had it narrowed down to pre law and fashion design. And she could have gone off and done either of them. And I was like, I wish I wonder which way he's gonna go, you know. And then finally, she said, I'm going to try this art school thing, even though she had never, like really participated in the arts whatsoever. Well, she's doing well
Speaker 1 1:23:41
me personally. As I say, I don't have kids my own but I have nieces and nephews. And I also have a strong conviction that there's no such thing as an adult, whether you've got kids or not, who doesn't reasonably have a an interest in the welfare of the of the oncoming generation. So I mentioned the thing I'm involved with called Space settlement design competitions. That's one thing I do and the other thing I do is I just later this year, I'll be fully qualified to be what is called a Naval Academy blue and gold officer and those are volunteers who helped shepherd high school students, juniors and seniors through the entire application process which is rapidly complex and incredibly competitive. There's something like one Wani or less people who apply for a given class who are actually admitted no kidding you know, more is the better but but this you know, help them identify the best possible candidates and and then helping encourage and shepherd them through the application process and keep an eye on as a goal. That's, that's something I you know, I want to be able to say, and whatever point I get to in my life, I've left something behind me that was that somebody else can get some values and worthwhile. I feel
Scott Benner 1:24:50
the same way about this. There's not too many days that go by that I don't think like we've put all this information in this one place. Like it's up to me to keep it alive. So other People can find it. And, you know, like, and keep building on it so that it continues to be valuable as, as norms, you know, change and technology changes and everything, I feel a lot of pressure about that some days like that, I should figure out a way to like, make sure somebody has it when it's over, you know what I mean? Like, you stop and think about it, there have been great websites along the years that have great information on them. Nobody knows where they are now, because they fall out of favor or whatever. And then all that great information is just gone. So maybe
Speaker 1 1:25:28
at some point, get all the podcasts, digitally copied onto a secure storage drive at some point and get it launched and landed on the backside of the moon, it's safe. I've
Scott Benner 1:25:38
already set it up with the storage company that after my death, they'll keep posting it. Like I've got that set up. And I am currently looking at and toying with feeding it into AI so that eventually it can just be a website where you ask the website a question, and it answers the question based on all the conversations from the podcast. Wow. So I'm working on that too. And then I gotta retire at some point, James, because I can't I can't talk as much every day. Although I probably could. But I
Unknown Speaker 1:26:04
am actually semi retired right now. So
Scott Benner 1:26:06
how is that?
Speaker 1 1:26:07
It's, it's new. Get used to the idea. And that was not voluntary. I worked for a company for 11 years, and they closed their doors last November. And I'm like, holy, I wouldn't I wouldn't read it, I wouldn't find the work. I
Scott Benner 1:26:23
look for a job. I'm 68.
Speaker 1 1:26:27
And I'm still doing work. I'm so but you know, I'm in a position where I've got all fired for those security benefits. So maybe I bring it up,
Scott Benner 1:26:35
hey, do you code Do you know Python and then stuff like that? I do.
Speaker 1 1:26:39
I am a coder. I'm not a Python coder, although I'm always got in the back of my mind that I've looked at that. And that's something that maybe I want to get a little more familiar with. I
Scott Benner 1:26:47
wasn't sure how much of that blended into your job based on when you started. That's all? Well,
Speaker 1 1:26:52
I've made my living in a number of different ways. But most of it has involved doing computer stuff one way or another. And most of that, in the last 30 years is involved things like AutoCAD, I'm actually an expert on I'm also an expert on using things like Excel. Okay, I specialize in generalization. So I have a lot of knowledge I have a great deal of knowledge about that goes at least a little bit of depth into many areas, a few years where I got a lot of depth. And one or two where I'm, you know, I'm your go to guy. The problem from looking for a job perspective is that that makes me instead of being even something as mundane as a round peg looking, you know, trying to find something other than a square hole. I'm an amoeba shaped peg. In a world where the holes are all grossly different shapes that don't fit any of them. That with any precision,
Scott Benner 1:27:49
I sometimes means that if I wasn't doing this, I don't know if anybody would hire me. And yet I'm incredibly successful at this one thing that gets, you know, very strange. So anyway, it's been great talking to you. I really do appreciate this. If you can hold on for one second. I just need to tell you something after we're done. But thank you very much. It's been a pleasure.
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#1254 What Kind of Influence
A mother shares managing her 8-year-old son's recent type 1 diabetes diagnosis, discussing the challenges of maintaining tight blood sugar control while balancing her husband's more lenient approach and the impact on their family.
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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 to episode 1254 of the Juicebox Podcast.
Today I'll be speaking with the mother of a type one who is also the wife of a type one and her husband's not great about taking care of himself, and she's worried it's going to rub off onto her child. 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. 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/juicebox Would you like to help people who have type one diabetes maybe even yourself? Will if you're a US resident who has type one or is the caregiver of someone with type one, filling out and completing the survey AT T one D exchange.org/juice. Box will in fact support type one diabetes research. T one D exchange.org/juice box complete that survey you'll be helping after you fill out that survey save 30% off your entire order at cozy earth.com with the offer code juicebox get yourself the same joggers I'm wearing right now. The sweatshirts the shorts the shorts are saving my summer can be serious for a second cozy Earth shorts are saving my summer get 30% off with the offer code juicebox at checkout. 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 to 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. Today's episode of The Juicebox Podcast is sponsored by Omni pod and the Omni pod five. Learn more and get started today at Omni pod.com/juice box.
Emily 2:05
Well I'm Emily I am a 43 year old mom to a type one and new type one diabetic and wife to a type one diabetic as well. I'm also a full time nurse practitioner specializing in nephrology.
Scott Benner 2:22
Okay, so let's get my notes here. She said you're 43
Unknown Speaker 2:26
I am.
Scott Benner 2:28
I've turned 50 yesterday. She doesn't look Thoreau says you say you're 43 your husband has type one. He
Emily 2:35
knows how long have you guys been together? Say we met as ER nurses and 2006 and we got married in 2009. Okay, so
Scott Benner 2:47
20 years, about 18 years.
Emily 2:51
I'm on my lunch break. I'm not doing that.
Scott Benner 2:56
See? 1820 years you guys been together? Has he had type on the entire time?
Emily 3:00
He has not. Ah, would you actually you want to start with that story? Yeah, please. Okay. So like I said, we were both ER nurses. When we met actually, I believe he was a nursing student. He's a little younger than me. Oh, and he is 40 now, but he we were planning on getting ready for our wedding. And we were both Night Shift Nurses and he was starting to lose weight. He was working out. He was drinking lots of water. And I noticed he was urinating a lot. And I'm like, you know, you're dropping away pretty fast. Like I've dropped one pound you dropped in what's going on? And he's like, oh, you know, it's purposeful. I'm drinking lots of water. One of the bathroom a lot. Well, the night of our wedding shower, which my bridesmaids had made cookie thing. I noticed he was just urinating like crazy. It was like two or three in the morning. Like cleaning up the kitchen making room for all the new kitchen things and I'm like, You have got to check your blood sugar. And he was like, No, I've just had a lot of water and I was like this is more than a lot of water. So his mother at the time had it was a pharmacy tech and whenever things get expired in the pharmacies, they tend to throw them away which is probably a whole other podcasts we could talk about. So we had accrued multiple glucometers that were just like expired and opened that she had brought to us so I come up in the cabinet get one out check his sugar in it read high and he's like no it's expired. It's not any good. So I checked mine and it read like 80 and he so he's 26 years old at the time I don't think I mentioned that check his with a different one. Like I said we had a crude multiple ones. And again at red hot and I was like alright, let's you know put clothes on we're gonna we're gonna go figure this out. So he was not in DKA he had a blood sugar somewhere and the for hundreds, I don't remember exactly how hot so they basically made sure he wasn't in DKA checked his labs. It was we we went to the ER we worked at, and they gave him some IV fluids, and we called endocrinology the next day and started insulin.
Scott Benner 5:14
Before we keep going, is your microphone on a wire? It is not, is that you're using the one on the laptop?
Emily 5:23
No, I'm using headphones
Scott Benner 5:25
using headphones. But there's a microphone on it. Can you put it closer to your mouth for me?
Emily 5:28
Yeah. I can also find me to just
Scott Benner 5:32
feels like you're turning, it almost feels like you're turning your head away from the mic at times. And it's you're kind of going
Emily 5:38
I am fidgeting a lot. So that's okay.
Scott Benner 5:41
Just fidget towards the microphone. Did you at any point during this process? Think I'm gonna take my brand new Cuisinart and get the hell out of here? Or did you love them by that?
Emily 5:49
You know, I don't it never crossed my mind. Really thought like, alright, you know, it's one more thing. We're medical professionals, we can handle this. It's not a big deal.
Scott Benner 5:58
Okay, so did it end up being a big deal? And could you handle it?
Emily 6:03
I could handle it. So it's really funny. He had a horrible, horrible diet, he would say he was raised on cocoa and Little Debbie. So I'm very much a type A person. So I kind of kicked in that type A personality started controlling all his meals. Because a Wednesday went from I want to say it was summer 1214. down to six, something about the next check. But shortly after that I released control because I had a your I like to tell him this on a regular basis. You're a grown ass man and a medical professional, you can handle this. So that was the last time we saw a six something a one see, he
Scott Benner 6:42
can handle it. So I'm still I took a note here from your husband was like, if I just drink a lot of water, I'll lose 10 pounds. That's what I learned. Yeah,
Emily 6:51
no, that's not how that works. No, unfortunately.
Scott Benner 6:56
So he goes, so you put it, you know, I mean, listen, I'm not saying put it on him like you put it on it. But you know, he gave his control back to him. Yeah, he didn't do well with it. From the very beginning, your kids mean everything to you. That means 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 now up to 90% of type one diagnosis have no family history. But if you have a family history, you are up to 15 times more likely to develop type one, screen it like you mean it because type one diabetes can develop at any age. And once you get results, you can get prepared for your child's future. So screen it like you mean it type one starts long before there are symptoms. But one blood test could help you spot it early, before they need insulin, and could lower the risk of serious complications like diabetic ketoacidosis or DKA. Talk to your doctor about how to screen for type one diabetes, because the more you know, the more you can do. So don't wait, tap now or visit screened for type one.com to learn more. Again, that's screened for type one.com. And screen it like you mean it
Emily 8:17
has moderate control. And I think a lot of it, he doesn't listen to your podcast, I feel okay saying this was it was such a lifestyle change, which I know everyone who experiences diabetes at any time. Once you accept it, you realize that but he truly had a the best way I can say it isn't like mortality kind of kicked in. And he had a lot of you know if something goes wrong in the world or whatever, like, that's it like if I don't have this insulin. That's it for me. And it has been I would say that still in the back of his mind, you know, almost 20 years later that this is still making life a little less easy.
Scott Benner 8:58
You're saying that he's fearful of a flood coming? Power outage? Zombie, something like that. Yeah.
Emily 9:05
It's hilarious that you pick zombie because he had a zombie fear when we first met.
Scott Benner 9:12
You just data them anyway.
Emily 9:14
Yeah, why not? Yeah.
Scott Benner 9:16
I don't know. Emily, we're gonna start wondering about you in a couple of minutes if this story keeps going this way. No, I that's interesting. Like that feeling because I see people talking about it online all the time, like that fear of like, what if something happens? And I just recently said somewhere that my daughter and I had this conversation because she asked me at one point, you know, what if something happens, like what if the world gets upside down? I was like, Oh, you'll be dead pretty quick. And she, you know, did she's like, what I was like, come on, you know, right. And you know, she was older when we were having the conversation, but I think it was valuable for her to hear. And I actually told her I said if this really happened, we you know, manage with your insulin as long as we could. We'd stretch it out. Start aiming for higher blood sugars like you know, start thinking about like light including a life, that kind of thing. you'd stop eating carbs. And I was like, but eventually one day if we ran out of it, yeah, I mean, that'd be it, you know? Yeah. And so, but I don't see her hanging on to it and worrying about it. But you think it's something that's with him?
Emily 10:12
Yeah. And it may be maybe the age thing, I don't know. Or it may have been his personality to start with the kind of doom and gloom. But I definitely hoard things like not insulin as much as I can, but also like, beef jerky, and things that if we did have an emergency that he could eat, and now our son,
Scott Benner 10:34
yeah, so so it's been a while now he's had type one for a while. I mean, the are you comfortable sharing what his a onesies are generally? Or do you not even check in with him?
Emily 10:42
So yeah, I actually know his most recent one from last week, it was eight. Okay,
Scott Benner 10:46
and now for you. If we put you back in charge of him, you okay with an eight? No, I'm not okay with that. And then your son's diagnosed when
Emily 10:56
he was diagnosed this past August, recently. Okay,
Scott Benner 10:59
so that's not long ago, six months ago, maybe? Okay, how old is your son?
Emily 11:06
He's eight. Now he was seven when he was diagnosed.
Scott Benner 11:09
Do you have any concern that your husband is going to impact him to an aid agency? A lot of people in my private Facebook group talk about their love for Omni pod five. Have you seen those posts and thought, Well, I wish I could have that experience with an insulin pump too. If you answered yes to that you might be experiencing FOMO FOMO FOMO. Yeah, you guys got me all twisted up on this one? I think it's FOMO fear of missing out on Omni party. It's FOMO. All right. I'll keep going. Symptoms of FOMO may include but are not limited to wishing you could wear outfits without pockets or dreaming about walking past doorknobs without getting your tubing caught. Maybe you fantasized about jumping into a swimming pool without disconnecting from your insulin pump first. Good news. You don't have to suffer from FOMO. any longer. You can see what you're missing by trying Omni pod five for yourself with my link Omni pod.com/juicebox. No longer should you have fear of missing out on Omni pod?
Emily 12:12
Um, yes, it's a complaint argument that we've actually brought up to his pediatric endocrinologist in the past, because we do argue about tight control versus the fear of low blood sugars. And apparently, it's very common for type ones who have experienced the roller coaster and the frequent lows to fear the low and wear me specializing in ethology and knowing what it will do long term to the kidneys. I want tight control, good steady control. And he is more willing to let the blood sugars to get much higher for much longer than I am. And it I wouldn't say it's a battle, but it definitely can, can bring up. You know, we're still new to it with our son. So it can bring a lot of what do we do we treat this do we watch this? What do we do for this? There's a lot there's a lot more discussion than probably most parents actually have.
Scott Benner 13:08
Yeah, well, that's really interesting. So the diagnosis of your son did not take your husband's perspective and change it. He just shifted it onto your son. So while you're out there going, I think we should maybe do better. He's saying no, this is okay. Correct. How long do you think it'll take? Because this is your husband is is embroiled in a psychological turmoil right now? Yeah, you will eventually get out of but I will say that the most common thing that I hear from people is that I finally did better for myself for someone else. Like right for like, I love my wife. So I did better. I didn't want my kids to see this. So I did better. Like that's what really commonly hear from people. So you're just very new at the moment. Why did you find this podcast?
Emily 13:56
Again, that type A personality the minute he was diagnosed, I went online, I started Googling from tic TOCs Instagrams app, just sort of following people left and right type one moms, type one kids, like how can I make this better for him? And went on podcasts because the pediatric hospital that we took them to was about an hour away. So immediately, I started looking for podcasts just for the drop, and found it.
Scott Benner 14:22
I mean, what's your son's a one, so you can I ask?
Emily 14:25
So he was 7.9. And there's a little story behind that. But he had the flu last month, so we had a lot of a lot of trouble keeping him down. In December
Scott Benner 14:35
while he had the flu, that was he managed with MDI or a pumper, and that's for both of them. He's
Emily 14:41
NDI right now. My husband has Omnipod but he has been MDR My husband has was in the eye for a long time he was on the original Omni pod. And believe it or not, even as medical professionals, our insurance is pretty crappy and the cost of Omni pod was I think we still owe the money to be perfectly honest, it was outrageous.
Scott Benner 15:02
Like we still have the money. But does he ever CGM?
Emily 15:06
He does right now for a long time he was on labor, right? We were paying like $75 a month for the labor. Right? And then now they're both on Dexcom sixes.
Scott Benner 15:16
Do you guys work for the same hospital? Still? We
Emily 15:19
do not. My nephrology practice is actually privately owned. And we are consultants at hospitals. And he currently is at a different hospitals system for an urgent care in the same town. Well,
Scott Benner 15:30
so you, you both are medical professionals, but your insurance doesn't cover, like, give you good coverage for devices.
Correct? Oh,
that's nice. You know, that's a decision that your employer makes.
Yeah, yeah.
Have you ever tried talking to them about it? So
Emily 15:50
once I finally got my son, so my husband carries his own insurance, the rest is on mine. We've recently crossed covered him on both of ours, but my son's CGM got covered completely. Once I've thought the insurance company because they originally had denied it. But my husband was actually working for an emergency department and the coverage was horrible. That being said, I don't know how much work he I don't think he put any work into calling the company and getting the prior authorizations and things that probably should have been done that I did the minute I got the denial. So a lot of that I put on him. I don't know how much is what the insurance problem is versus what just the lack of
Scott Benner 16:33
work. You said, Do as I say, not as I do example.
Emily 16:38
I was gonna say he's a do as I say,
Scott Benner 16:42
Well, if you would tell him he would do it, by the way, but you stopped telling him? Yeah,
Emily 16:46
I think I've told him more than once. And you know, back to the euro grown ass man. situation. So I'm
Scott Benner 16:51
letting it go that You've robbed the cradle here. Emily, I'm seeing what's happening here. You guys have just the one kid? Are there others? No,
Emily 16:58
we have an 11 year old daughter. Oh, okay. So
Scott Benner 17:02
is that autoimmune running your husband's side of the family? He
Emily 17:05
has a cousin who was type one, I do not know of any other family members with autoimmune problems whatsoever. Now I have celiac, okay. And multiple family members who also are celiac. And actually, when we were pregnant with our oldest, he had asked the OBGYN You know, what are the risks of our child having type one? And she said that since I was not a tough one, it was a low risk.
Scott Benner 17:34
About that. Yeah, maybe what she meant was, Oh, you already had sex made a baby. Why are we talking about that? too? I know. It's too late now. Exactly. Oh, my gosh. Interesting. So my first thought here is if your husband and your son's a onesies are matching. So specifically, my expectation is it's just the rhythm of your household that leads to that eight,
Emily 17:56
they have completely different diets really? Well, my son started at an agency five months ago say once he was 12.9 I believe. Now it's still coming down. It's still coming down. And his his endocrinologist doesn't want us tightly controlled yet, much to my dismay.
Scott Benner 18:14
Does he think he's honeymooning? Yes, he is honey money. Okay, fair enough. But, but listen between you and me a seven, nine and just turn up the basil a little bit? You know, maybe it'll be a seven.
Emily 18:27
He does have a very weird insulin. I don't know, I just thought a reaction, but I'll go into it in a minute. But um, it's weird. So I play with insulin a lot. And there was no chronologist as far as like her again. But I adjust it based on what he's doing on a regular
Scott Benner 18:43
basis. Good for sure. The algorithms are adjusting constantly. Yeah. I mean, from a basis of a good of a, you know, a starting point of a good setting, of course, but they're still adjusting up and down all the time. It's it's almost never ending. So you know, to say, Me my experience, raising Arden on MDI and then just the pomp and then eventually a CGM became a thing. Like, it's not like I got it. Finally, it's like it came into existence. And then, you know, we started doing that. Then it took me a while after I had a CGM to like, look at what was happening and make sense of what was going on. But, you know, even once that was all together, you're still you know, I mean, there's a pretty big aspect of the Pro Tip series where I talk about Temp Basal going up and down and, you know, bumping and nudging because all I was really doing back then was I was being my own algorithm. You know, I was taking it away to all those. Yeah, right. That's all you're doing. So like, now I watched the algorithm do it on my Ha, sucker. Let him do that. Not me. Yeah, that now that him has a little app on her phone, you know, right. It sounds like you'll get there. But my question is, how long are you going to not say anything? Once hubby starts saying stuff that goes against what you want to do for your kid. That's gonna be a bad day.
Emily 20:06
So the I won't let me think of an example
Scott Benner 20:11
I'm gonna hold it in and go Axe Throwing, what is it you're gonna do, I'm like, because it's gonna happen, like, you're going to titrate his agency down, right? And it's gonna get into the sixes. And then you're going to you're going to know though, the work that goes into that. And then one day, there's going to be a rise in a blood sugar. And you're gonna say, How come you didn't Bolus and he's gonna say he's fine. And then you're gonna go, Whoa, and that's gonna be the end of it, then fists are not fists, you probably won't hit anybody. He seemed like a nice, but like words, at least, or upsetness. Like, it's like, I want to get ahead of this for you is what I'm saying? Well, okay,
Emily 20:41
so it's already happened. So sorry. I don't even know how long ago this was. It was maybe October, November. So he was diagnosed in August. So I had actually slipped away my husband, I believe was at work. And I had gone off to do something and my daughter comes up to me, and she says, Ben's alarm is going off. And he keeps ignoring it and saying it's fine. And so we've taught her kind of everything that she needs to know to help out. She's very bright and very helpful. Firstborn. So she knows she knows what to do in an emergency. She knows you know, what an alarm is, like, what? She just knows everything that needs that she needs to know, at 11 years old. So I came out of out of my room, and I was like, you know what's going on, but and he was like, it's hot. No big deal. It'll come back down. And I was like, huh, ha ha, like, What do you mean, it's hot. And I snatched my phone up, and it was high 210 to 300 arrow up, and I was like, okay, so what did you eat? Why did you eat without insulin? And what do you mean, it's fine? And he said, well, that says it's fine. He does. This is not a big deal. And I was like, Well, absolutely not. So I made it like, that night. I was like, Look, Bill, Ben's already assessed my son, this name has been on the bins already picking up on your behaviors. So you're gonna have to change him. For this. It's going to be a much bigger battle.
Scott Benner 22:06
Yeah, I don't think he's going to enjoy living in the garage at all. But if I was him, I'd shift now. Yeah, he's just all I could think of when you were talking about like, this is where this is gonna go. And someone's gonna win and My money is on you. So
Emily 22:22
yeah. So my husband's a Wednesday, you know, I don't, he doesn't need for all the diabetics listening, do not take this as advice whatsoever. He works 12 hour shifts and frequently drinks coffee and does not eat at all and a 12 hour shift. He says his blood sugars are better when he fast and but then he binges once he gets off work late in the evening. And that is why his control was poor, in my opinion, if he would schedule regular meals and have a routine, because he doesn't work every day. So that's not a routine, I think that control is much easier.
Scott Benner 22:57
See Pre-Bolus thing is meals.
Emily 23:00
Not in the way that you think of it. I don't think he Pre-Bolus Is anything because he doesn't plan. Because usually by the time he gets home, you know, we're all asleep, even though it's 839 o'clock at night, but you know, he may go back Chipotle and get a burrito bowl or something. And then he'll sit down and he might give himself a few units and kind of see what happens. But then he'll get up and get chips and salsa or something like that. And then he'll give himself a few more units while he's eating that. And then I'll get up at four o'clock in the morning and I will hear his Dexcom going off on his phone almost every morning alarming. And I'll be like, Is it is it higher or is it low? And it's 95% of the time it's high. So
Scott Benner 23:43
taking us take out for a minute that you're I'm assuming you love him and you know that you care for him and all that stuff and you don't want there to be a bad influence for your kid. Go into your training, though, isn't nephrology? You know, in nephrology, like, are you not worried every time it happens? This is like not eating you up inside.
Emily 24:01
So actually brought home a urine just in the fall. Or maybe it was late summer and I was like there's I don't know if you know this. You probably do but protein in the urine shows up a lot of times as bubbles. I had noticed bubbles in the toilet. And actually I think it was coming from our son, not him because it was pre diagnosis. But I said there's bubbles in the urine and I want you to do a 24 hour urine before you're one of my patients. He ended up not doing a 24 hour urine, completely ignoring me and I got mad and threw it in the trash. Yes, I watch his lab. They'll watch his kidney labs very closely. And I tried to explain to him as I do all my patients that that sugar is damaging even at good control. You know you're gonna have some damage from the ups and downs and it's delayed. That lab result that we're looking for is behind the ball. By the time it's telling us something's wrong but He pretty much it's like, my labs are fine. It's not a big deal. My labs are fun. And I'm like, today they are.
Scott Benner 25:04
I heard a person recently say they wanted to get in on top of their health, this person does not have diabetes, but they are significantly overweight, like, twice probably what their bodies should be carrying. They were like, I'm gonna get on top of this. And they went to the doctor and came back and said, my labs are great. I don't know that that matters. Like your weight, your weight, your weight over 400 pounds. Like, I don't care if your laps are okay, but and they took my labs, okay, I don't need to do anything. And that was the end of it. You'd
Emily 25:35
be surprised the amount of people who you could look at and go, there's no way you're not a type one diabetic type two diabetic, just from the morbid obesity alone, and then they're a onesies normal, and all I can think is your liver. It's something holy.
Scott Benner 25:47
I'm not I'm not even equating it to diabetes. I'm just saying that when something is so like, obviously not. Okay. That people will write it off. If they get a test back. Test payment. Fine. It's okay. Don't worry about like, you know, like, you know, have you tried, Emily, listen between you and me. I've been married a long time. Have you tried just putting a pillow in the middle of the bed and saying we can move this when you're a one sees under seven? Because I'm a boy, that will probably work pretty quickly on me. You know what I mean? So honestly, I think you're overthinking the whole thing.
Emily 26:17
That's hilarious. It's hilarious. I didn't want to tell the story of how my son's diagnosis came to be if you have time for that, too. Please, please, I'd love to. So my son was a little overweight. At seven years old. He loves Legos and hates to sweat. We, we always say he has a whole lot of lazy in him. And so actually last April, and I will say we are very pro vaccine in our family. So my kids are always vaccinated. But last April, he had gotten the flu, and he got flu B. And he was sick for about two weeks and dropped about 15 pounds at that time. But he wasn't eating and he was really overweight. And so we didn't think a whole lot about it. He looked healthy, with losing 15 pounds. And over the summer, I said this is enough. And so every morning before I left for workout would make them come outside and go for a half mile walk to start their day at 730 in the morning. And so he dropped about 10 more pounds during the summer. A lot of people commented, you know, he looks like a new kid. He's lost so much weight. And we're like, Yeah, I mean, he was sick. He lost weight, the weight loss stop. Walk down summer. Yeah. You know, yeah, I mean, he's lost weight. He's normal now. And he got to where he was eating nonstop. I mean, like more than my husband. And I was like, son, you're I mean, you're eating more than a girl man. Like, I think you've had enough. And this is right about the time school started back in August. And he's like, but I'm just so hungry. And he was starting to sneak food. And he was drinking, I would say he was drinking a lot. But he and I both typically drink a lot of water. So I didn't really think much about it. Because it wasn't, didn't seem excessive, necessarily. And so my husband and I had actually met, I had a little break in my schedule similar to today. And we met for a walk. And it was on a Thursday. And I had said, you know, Ben's circles under his eyes, which he's always kind of had a seem a little darker. And he said, Yeah, what are you concerned about? And to say I have anxiety is to minimize the problem. But I said, you know, what, if it's leukemia, and he was like, Why do you always go straight to me? And I said, I don't know, you know, he's just gotten so thin. And he's got these circles. While we're to we'll give it a few more days and see, kind of see how the week plays out. So, Friday morning, he got up and he had wet the bed, which was unusual. And he kind of just said, my, my husband said in passing been, you know, wet the bed last night. And I was like, Oh, that's weird. So Saturday morning, then gets up early as it is to about 6am. He said, You want to get up with me? And I said, Yes, we got up. And he said, Can you get me a glass of water and a bowl of cereal and a glass of water with cereal? That's weird. So I said sure. And he Cinnamon Toast Crunch, which is you know, lovely. And then he said, By the way, I wet the bed again last night. Dad put a blanket over it. Can you wash my blanket? And immediately, I went and woke my husband up and I said we have to check his sugar. And he was like, What are you talking about? And I was like he's wet the bed twice. That's not normal. And he just asked me for water. So we checked it. It was about 450. I immediately started solving. Yeah. Because I said he's not my blood type. He can't have my kidneys if you need
Scott Benner 29:45
them. That's where you went to right away. Immediately immediately.
Emily 29:48
I said Norris my blood type is our daughter. He's not he's your blood type and y'all can't share kidneys. You know, what are we going to do? And so we just got him dressed. And my husband I took him to the Children's Hospital an hour away in Atlanta, and I took my daughter to volleyball practice and then came home packed bags. And by then he took them to the hospital. He was in a mild DKA. He ended up on an insulin drip for about four hours. That was a Saturday afternoon, we were able to get all of our diabetes education convinced them we knew what we were doing and lead by Sunday afternoon. We assume it was triggered by the flute. My husband, we don't know exactly what his trigger was, unless it was just the stress of getting married. But it was very, it was very overwhelming.
Scott Benner 30:33
For everybody, for you specifically, probably
Emily 30:37
from a specific oil, you handled it differently. I'm mainly went to Oh God, how can I keep him off dialysis. And my husband went to a different place have this as my fault. So we actually did the trial net testing my daughter and I at one of the juvenile diabetes walks. And because like I said, I jumped all in. So I got a team going, we went and did all that. And she and I are both negative for antibodies. So even my son recently got mad at my husband and said, This is your fault. You gave me this diabetes. That
Scott Benner 31:10
sucks. I feel I feel bad for your husband. That's terrible. Yeah. It's horrible. Do you guys have any thyroid in the family? Multiple
Emily 31:17
women in my family? I do not know if I don't know of anyone on his side of the family. And I do know that there's another trial that for antibody type thing that will test for the celiac. My son is negative for celiac currently. Yeah,
Scott Benner 31:33
but you and your husband are like a, you're like a perfect storm. Really? Yeah,
Emily 31:37
we really are. Yes, my mother had Graves disease. My grandmother has Hashimotos. So it's something that I'm keeping an eye on. I'm not convinced my daughter's not celiac now, but she does not feel the need to be tested and does not feel like it's important enough to her right now. So I'm letting her enjoy easy. Carbs.
Scott Benner 31:58
I can hear all the celiac people yelling silent celiac at their, at their iPhones, right? Yeah. Or Spotify.
Emily 32:04
I mean, it took me it took me many years to convince a doctor what was wrong with me with celiac. So I'm prepared to battle for her when the time comes. But
Scott Benner 32:13
well, so I don't know where to go from here. Wait, I do know where to go from here. I'm sorry, I apologize. You are having a really interesting, but not uncommon experience. And I know this because I've spoken to a lot of nurses who have children have been diagnosed or have been diagnosed themselves or had a spouse done, what have you. And they start from this very basic understanding of diabetes, because if you're if you're inpatient or your emergency, like your understanding of type one's pretty basic, and you don't really the way they manage it, I mean, to call it management really is. I mean, that's a loose interpretation of what's actually happening. So if
Emily 32:53
you could only if you could only say the way this my hospital managers talk, or diabetes in general, as an inpatient, I'm doing
Scott Benner 32:59
a series called cold wind, I'm getting a good feeling for it from anonymous healthcare workers. So don't worry, I horrible Yeah, I know what's up. But that's, that's your level of understanding. And then now you it's in your own life. You know, originally with your husband, you were like, if we do this, we'll be okay. His agency was very good under your tutelage. And then not so much when he's out on his own. He's impacting your son in a similar way, you are coming from a different perspective. And, and, like, how do you see this shaking out? Because in my heart from a third party, I think what are finds the easiest path? So your son's going to follow your husband because it's easier.
Emily 33:44
And we already have times where even the doctor was like, what happened on this day, thanks to Dexcom clarity, you know, they can pull up all these charts. And I said, Oh, that day, he snuck I think, apparently because I had the same exact question about that. She goes, okay, okay. Maybe
Scott Benner 34:00
that's my point is that if if you're preaching, health and wellness and you know, Pre-Bolus thing and that stuff, and your husband saying it went up, it'll come back down. It's okay. Like, I don't see how a an ammeter a young child's going to go for harder. You know what I mean, when they're making a decision, and then that's going to leave you in a bad spot?
Emily 34:23
Yep. Yeah, I'm okay with being the bad guy, though. So
Scott Benner 34:26
you're the bad guy. Well, I don't think you're the bad I don't that doesn't make you the bad guy. But I but I understand what you're saying it. It seems really unnecessarily upsetting to me, you know, because, because at some point, I mean, we are ignoring what an eight a one C means. Right? And he's got it now. Right? Your husband has to know, he understands. And so now we understand it's happening to him. He's understands it's gonna happen to your son. And I don't really know what my next question is, other than to say it's a really bad situation. Hello, I'm wondering how you're going to handle it. So
Emily 35:02
my first step is to convince my son which has been very difficult to try the Omni pod. He hates adhesive. And we finally, this last Dexcom change, got a routine that was not painful and I was able to get that bad boy just slide right off. So I'm hoping by the time we do our pod prep class in February that we will have him convinced to give it a try. Because I mean, he's used to snacking and eating what he wants. And while I still wish I could get him to rein in that sweet tooth. I know from treating diabetics day in and day out that they can't help but crave sweets at times more. Not necessarily more, but I want him to understand the balance of he can have really whatever he wants in moderation with insulin, and he still has honeymooning so it makes it a little more difficult because there's so much he can have without insulin. He goes all day he eats an omelet in the morning school. He eats a freeze dried strawberries, Atkins chips, ham and cheese, no sandwich just ham and cheese every single day he eats this, and he doesn't need insulin. So then he comes home. And I give him insulin for dinner. But he's still very much. I don't know, accepting understanding, fearful. I mean, there's so much emotion for a child who remembers life before and is still trying to adjust to life now. It's difficult. But like when he had the flu, this past December, he started, his blood sugar started going up. So I took as long acting he's on 10 of ones. So I took them to 11. And the next night, he was still high. I mean, like I'm insulin, dosing him every two hours was short acting to keep him at 200. He's thought take him to 12. And he's still hot, though, I take him to 13. Because I was like, we gotta get this down. Luckily, he didn't have ketones. And His correction factor was 90. So I took it to 80. And he was supposed to round supposed to round down on his insulin, which I disagree with around that bad boy up. And then I just got to where I just added half a unit every time if he needed to. I gave him two and a half y just to try to keep him at 200 for a minute. And I mean, it worked, obviously, but an eight year old can't do that for themselves. And unfortunately, I do work full time and can't be there all the time. So
Scott Benner 37:27
you're thinking about an algorithm? Yeah. Okay. I mean, let's you can sell it. It's no more shots. Yeah, no, we've tried that. He's like, I don't care. It'll be easier to eat what you want. If you go on that route?
Yep. Yeah.
Have you tried therapy? Actually,
Emily 37:47
yes. His provider has integrand ologists. We've established with a psychologist, they have two in their practice that are diabetic, trained, or one of them, I believe, is a diabetic themselves. So yes, we're in that route, as well to kind of break through some of these. And what's really funny is, my daughter is tight control my son, when he had the tiniest, tiniest injury in the whole neighborhood knew. And, but when it came down to this, he's been a real champ about it. So I try to give him as sure as much credit as I possibly can.
Scott Benner 38:25
So it's all very new. I'm not I'm not saying it's gonna be perfect right now. I just think you have specific challenges. I mean, his age, you know, his general demeanor on this, you know, the influence from another parent. Those things are on pill. I'm sorry, I'm sure he's a great guy. I'm not like I'm not on them or anything. But like, you know, it's just like it is what it is. There's plenty of people with type one walking around with a one season, they can do whatever they want. I'm not telling them to do differently. But you have a perspective. And you're saying I don't want that. And these forces are going back and forth. The kids obviously seems like personality wise might be more like your husband. Sounds like your daughter might be more like you. That seemed fair. Yes. Yeah. So you're he has a lot of uphill battles there. And then you're going to be the the only way Listen, I don't want to be the Ghost of Christmas Future. But the only way this is going to work is if your husband spearheads it. Yeah, and not just listen to your mom. Yeah, like because that's not going to work either. Like he's going to have to like get himself a CGM manage himself. See, see what's really possible and then pass it on to your son.
Emily 39:31
Yeah, that's all and I mean, he. He's tried like, he's got the Omni pod. And so he'll say like, you want to pull this off my son, you want to help me? You're gonna press the button to start it and Benjamin's like, Absolutely not. I have no interest in that whatsoever. So
Scott Benner 39:45
I see what you're doing. You're trying to soften me up.
Emily 39:47
Yeah. I'm not doing that.
Scott Benner 39:50
I mean, listen, I know there are people who slather oil on them, they get into they slide off like all kinds of stuff. I always just hold on I'm like just grabbing yank it off and it'll hurt For a second Yeah, be done with it. That's
Emily 40:01
my husband's philosophy. Yeah, grab and yank baby oil and a bathtub slid right off. So I
Scott Benner 40:08
have such an inappropriate joke. I was gonna say that's gonna be his philosophy about a lot of stuff if he doesn't get this together
sorry. Yeah, I don't know. Like you're in a really weird position. And I don't know that it won't come together. Actually, may I be honest? It probably will. Yeah, what I think will happen is that some times gonna pass and your husband is going to have his come to Jesus moment. And then he's going to write himself and he's going to do it for your son, and then he's going to drag everybody along with him. And that's what's gonna happen. I think you're in the middle of two different adjustment periods right now. I think you're in the middle of your son's diagnosis, from his perspective, and he's not looking to be, you know, wearing a bunch of stuff right now. Right? And you're looking at your husband gonna have to get past the guilt, and then get on to the being a parent part. Yeah. And he's gonna end up saving himself by mistake while he's saving your son. Yeah,
Emily 41:04
that would be wonderful. What?
Scott Benner 41:05
What I see happen all the time. And people. It's very common. It's something human that, you know, it just happens over and over again, people just don't do things for themselves. I don't understand it actually, like, look at you, you're running around for your kids. You know, you you know, your husband, your husband's like, I know what to do. I
Emily 41:24
wouldn't say we had an unhealthy lifestyle. But we didn't have the most healthy lifestyle until COVID hit. He was actually working in the emergency department at that time. I was in nephrology, and I was like, Well, I'm not going out with that. So I immediately quit drinking wine as a coping mechanism and started exercising. And I was like, I've got to be a good example for the kids. I've got to be healthy. You know, we're not dying, working in a pandemic, this is ridiculous. And so they, they see that, and they can appreciate that. But it's really weird. They don't do it for themselves. So it's a battle, would
Scott Benner 41:58
you catch a glimpse of yourself in the in the cabinet door with a glass of wine at three o'clock in the afternoon during COVID? And you're like, Oh,
Emily 42:05
I was like, Well, what I what I tell everyone was I drank the first month away, and when that didn't solve any problems that decided to try something else.
Scott Benner 42:14
I don't remember. I don't remember March of 20. Oh, that's something I listen. It's life. You know, it's a process you're, you're going to come up against things and find ways over under and around and some things you're going to meet head on. This is going to be one of those things, it's going to come to a head in less he finds a way around first, because you're going to get pissed at some point.
Emily 42:38
Like, a lot.
Scott Benner 42:39
I'm just telling you like the I've lived through the I've lived through the feeling of giving every minute and second of your life to making sure that a blood sugar is where it's supposed to be and then seeing somebody else come in and get up. And you're like, Whoa, what are you doing? It's like someone walking on your freshly mopped floor times a million. You know, you're like I just got done fixing this blood sugar. What are you doing? Oh, yeah,
Emily 43:04
I mean, even his school nurse will use two of them. They have two of them in their school that alternate. And one is just like, like, I'll call her up. I'll be like, Hey, did he have something because he went from 120 to 200. Like what's going on? And she'll be like, Oh, he wanted a dumbed down soccer and I just couldn't say no. And I'm like, cool, but no, your sugar. And like,
Scott Benner 43:27
who couldn't say no, I'm sorry. The school nurse school nurse, what do you mean?
Emily 43:34
And or they'll call me and go hey, he's 200 But he's about to get on the bus. So do you just want to fix this when you get home? And I'll be like, I mean, is he 200 own up? Is he to me? How
Scott Benner 43:44
long is the bus ride? Yeah, yeah, I
Emily 43:47
mean, like, where are we at here? And so they worry about and honestly and his elementary school which is quite a small elementary school there are four or five top one kids right now so and he's the most recent one so it's not new for them this in the nursery is very lenient is actually a very well established he was an emergency department nurse she was a flight nurse like she's got a lot of experience. I don't know what why she doesn't want to treat his blood sugars or
Scott Benner 44:18
why she's unable to say no to a lollipop
Emily 44:22
I find them and it's brought back a lot he brings them home a lot I'll say that
Scott Benner 44:25
from the sugar from the sugar pusher this
Emily 44:29
from and I hate it I mean you know he's in second grade so they they reward the kids with candy so often and it seems you don't think about until it becomes a problem. So you know once a week coming home with a sucker not a big deal earning a Skittle every so often for getting a correct answer, not a big deal. When they're diabetic and they're in five Skittles, you know, it can be a big deal. So,
Scott Benner 44:53
Emily, I'm gonna say that I could probably find a couple of psychologists and line them up and tell you that rewarding children with candy is probably not a good idea. That's Oh,
Emily 45:02
yeah, they do it though. It's it's an N I've always said like you don't you don't need a starburst. Like I don't understand get a sticker.
Scott Benner 45:09
It can't they have a sticker where I don't know how good grade. Yeah. How about an A, let's just go with that. They used to give us pluses and minuses and then we could trade them for, you know, you made a little currency. Okay, you build up 100 pluses. You could buy, like a half a letter grade on a thing or something like that. You know, they mean, like, yeah, yeah. I'm just picturing your children's educators lobbing Skittles at them when they're getting math problems, right. One plus one is what two Oh, right. Here you go. Let's see if we get in your mouth. Yeah,
Emily 45:38
it's pretty close. Oh, Jesus.
Scott Benner 45:39
You know what? I can't I can't tell you that this conversation has left me very upset. And I feel very hopeless. I feel very hopeless. I keep searching for like the bright light here. But you're not up to it yet. So it's not completely up to you. So Oh, wow. Well, here, tell your husband this. When my daughter was diagnosed, her endocrinologist pulled us aside after like the second, it'd be like our second visit. And she shooed our kids out of the room and told us that she goes, Hey, you too. The instance of divorce is one and two. But when you have a chronically ill child, it goes to two and three. And I was like, right on. Thanks. Right. Yeah. And she said, You guys should probably go to therapy. And then like, she kicked us out of the room. It's going to be one of those things like your mama bear things not going to like it's not going to go away. Yeah, yeah. I had it. It's hard to get rid of. I've said some terrible things to my wife when she's gotten in the way of me managing Arden's blood sugar in the past. So especially after you've, you've been at it for a full day, with a to my daughter was two when she was diagnosed. You know, I can imagine, yeah, you got everything rolling along. And then somebody comes in the door with like, a sack full of crappy food. And you're like, what enough? Are you doing? Like, I just got this together? You know, I spent my whole day getting this blood sugar stable. I didn't know what I was doing back then. You know, so there's a whole day's worth of effort. And then somebody just walks in. They're like, Hey, it's me. I'm the seafood fairy. And you're like, No, I can't, I don't. And then they feel bad. Like they're not doing it on purpose. You know what I mean? Like, so? This doesn't happen anymore around here. But like I'm saying in the past long time ago, I know how much anxiety and turmoil it brings up. So I wish you luck. It sucks. And you're are you doing this on your lunch break? For me?
Emily 47:30
I am. Thank you. Actually, I usually have a pretty, pretty long lunch break, because I do dialysis rounds on my lunch break.
Scott Benner 47:37
Oh, geez. How did you get into this line of work? By the way,
Emily 47:41
I was an ER nurse for 12 years. And then I was a hospitalist for a couple of years as a nurse practitioner, and I got recruited by the nephrology group from the hospitalist work, you're likely to find it rewarding. I do I always swore as an ER nurse that I would never work with dialysis patients. But you know, never say never. So I actually enjoy it a lot. But the
Scott Benner 48:06
I guess you get to know people too, right? Because they do. Yeah, they repeat people home dialysis is that if I can ask couple questions about it. Yeah. Is it the same? Are you getting the same bang for your buck as you are if you go into a dialysis center,
Emily 48:20
and it's actually better, you can do it more often for less time. We can control not control things a little bit better, but you have less of the roller coaster building up of toxins pulling along while building up on the mountain. So home dialysis is actually the best option. And is that there's actually a huge push for it right now. But you know, just like with any other chronic medical condition, patients are scared to do things by themselves. So getting over that hump is
Scott Benner 48:52
difficult. Once you're on dialysis, is it? Is there a average amount of time you can make it without a new kidney? Or it could go on forever? Or does it vary?
Emily 49:03
I have some patients who have been on dialysis for more than 20 years, who will not get a kidney they don't qualify for a transplant or who you know, had a kidney. It lasted 10 years, and they've been on dialysis for 20 years. But then we've had some transplants who've lasted. I had an older lady, she was in her 90s. And I want to say her transplant had lasted over 30 years. Wow. Yeah, so admit, but it just takes diligent just like anything else, taking those meds, getting those follow ups, doing what you're told to do. And that's hard for so many people. It's
Scott Benner 49:38
not just diabetes or in other states. It's just getting people to do things. repetitiously is tough. Yeah. And isn't it true that once they start feeling better, they forget about the thing that made them feel better? Yeah.
Emily 49:48
Yeah, even notice that Yeah. And so many of them will say like, well, I didn't feel good today. So I didn't come to dialysis. And I'm like, But why do you think that would make you feel better?
Scott Benner 49:59
You didn't feel good today because you need to come to dialysis. Yeah,
Emily 50:03
like if you were, if you were sick gi related things, for instance, I can provide IV fluids and Zofran and things like that with dialysis, like I can help you out. I mean, if you can't get off the toilet, then I can't help you there. But there are a lot of things I can help with. Or I can always come look at you and say, All right, yes, we, you know, here's what we can fix about this sitting at home, I can't do any of that. So, but convincing people of that is so very difficult. It usually takes me I tell everybody, I need you to give me six months, because you're gonna feel worse before you feel better. Your body has to adjust to this. Usually, and it's always a battle, I always tell people, I'm not going to push you on it or encourage you to do it. Unless I have to.
Scott Benner 50:44
Everybody who gets dialysis, they end up with a fistula, right? Like a port somewhere.
Emily 50:50
A fistula or graft, I mean, some have a tunneled catheter, because they refuse or they, they've been doing it so long that they just don't have vascular access to do anything else. But of course, you can start with PD and peritoneal dialysis in the belly. But that does eventually burn out.
Scott Benner 51:06
What are the real life impacts of people who are on dialysis? Like, what are they going through day to day? You
Emily 51:12
know, depends on the type of dialysis and kind of what how rigid they are with what we tell them to do. I have one gentleman, he's been on it 20 Something years, he says, I feel great. I do everything you told me to do. Come to my dialysis, I never miss I feel great. I have no complaints whatsoever, comes to dialysis for hours, three times a week. And I have other ones who should be there three and a half hours three times a week. And they may show up once and they're in and out of the hospital nonstop. And it can be very frustrating. And I have some who gain two kilos between treatments, which is average and okay. And I have some who gained 10. And I'm like, do you understand how many pounds 10 kilos in three days? Like, what are you doing? You don't know what you're doing to your body? And it's, I call it 51st dates? Because I just say the same things over and over and over again.
Scott Benner 52:02
But what are they experiencing? Like privately like, what are they nauseous? Are they like, what do they go through when they're not?
Emily 52:11
Feeling? Well? You mean like before starting tile? So
Scott Benner 52:13
once you're on once you're on it? And if it's not, if it's if you're not doing the things you're supposed to be doing, you're not having an optimal experience, I guess? What are some of the things that are happening. So,
Emily 52:23
for instance, if you gain too much fluid, if we pull off a lot of fluid during the treatment, or more than what your body really can adjust to frequently you're going to be weak, you're going to be nauseous, you're going to be sleepy. So they're just like, Oh, I just sleep all the time. I don't have any energy. And I'm like, and some of that's usually when they start their Mnemic we have to get that kind of turned around. And the blood pressure tends to if they're sky high, and they have on five kilos or something ridiculous. We pull off five kilos, their blood pressure drops significantly. So they're hyper hypotensive all day and their diet can be limited. You know, they're on something called phosphor responders. And sometimes those calls gi upsets some constipation, some diarrhea and vomiting. So they have to take that with every meal. There's a hard existence. It can be Yeah, they can be it's just a lot that you have to consider. I mean, it's similar to type one diabetes is a lot that you have to consider in everything you do all day, they have their own food restrictions. They're not allowed to drink, really more than 32 ounces a day, which to me is a nightmare. I drink that in the first hour, I'm awake, I can't imagine and I try to give them empathy for that. Because I know I could not imagine being limited like that. It's hard for some people, for sure. It is yeah. And but at the same time, I'm like, All right. I mean, I can understand, you know, you had a thirsty day you were active. You know, you wanted you wanted to go that Super Bowl party, but at the same time. You've been doing this for five years, it's
Scott Benner 53:54
you knew what was gonna happen next. Yeah. You
Emily 53:57
knew you knew I'm gonna find out your Monday morning. So do
Scott Benner 54:01
most of them come from one disease state like, or is it a very, it's that I'm sure a lot of things, you know, can end with kidney failure. But do most of your patients come from like type two or? Most
Emily 54:12
of them are type two. Yeah. So type two, Hypertension is very common. A few in our area is different. For instance, there's a disease, polycystic kidney disease, and sometimes you see pockets of that, because it's very, it's genetic. And we have a pretty large population of that in our area. So we have a good many with that. And then lupus nephritis can be common for those who do not take care of their lupus early. The same with diabetes. Those are probably the most common. Do you
Scott Benner 54:44
think that people with type two as an example, know that they're there because of their type two? If I'm their provider, they do they understand? Do they understand that? There are there's more damage coming the kidneys there's just what they've seen so far, or is that a or Do people have that feeling of like, Oh, something finally broke? Now it's broke, nothing else is gonna go wrong? Do you know what I mean by that?
Emily 55:06
Yes. So I think it just depends on, you know how much education there have been provided with by the providers. Because for us, I was always taught that if, if the eyes are involved, the kidneys are involved. So even if they don't know they have eye damage, if they've got kidney damage, especially if we biopsy them and know it's coming from diabetes, we immediately are like, you're like your vision, you got to stay on top of this, because it's been affected. So sometimes they know, but I don't think they always grasp the reality of the full picture. And then kind of by the time, especially once they get to dialysis, you do kind of get out well, you know, here we are. Just like the last question. Yeah. And luckily, once you end up on dialysis, because your medications aren't rapidly filtered, or normally filtered, the problem is, a lot of times their blood sugar starts to get really controlled, as that kidney function starts to decline. And so then they get like, but my blood sugars are better. And I'm like, but you're at once he was 14 for three years, like they're better now, because the medicine is lasting longer.
Scott Benner 56:18
And what is better mean? 10?
Emily 56:21
Sometimes it'll even a once he's come to five, they'll go off their diabetes medicines. Really?
Scott Benner 56:25
That sounds Yeah, yeah. Wow. Any heart issues pop up afterwards? Usually? Oh,
Emily 56:31
yeah. Yeah. The correlation between heart disease and chronic kidney disease is it's close, right? Enormous. It's yeah. And then you'd get microvascular disease, especially because you have issues with calcium and microvascular disease from calcium buildup, and it's horrific, really, I mean, just dialysis itself. I mean, you know, you're pulling fluid from the body, and then it builds back up. You can just imagine kind of how it does that to the vessels, they all end up with heart failure, not all of them. But frequently, and that were heart failure. And,
Scott Benner 57:04
well, Emily, like I said, You're a party. This has been nothing but bad news. But I appreciate you doing this very much. Thank you. I hope people don't think it's a bummer. But it's good information. You you have it. So yeah, I appreciate you telling us the personal story. And then finishing off here with explaining some things from your professional perspective, too. Thank you. Yeah. And
Emily 57:22
I wanted to make other parents like, I want them to know that you know, even as to health care professionals, we probably missed the signs for a minute, you know, when it came to our son, and it's, it's very easy to beat yourself up about it, but you just do the best you can every day. Yeah.
Scott Benner 57:36
Now listen, I knew something was wrong with my daughter for a month and she still almost was in a coma by the time I got out of the hospital. So it's hard to see me it's happening in front of us so slowly, you just never put the pieces together, like fast enough. Yeah. And
Emily 57:50
I look at the picture. And I'm like, Ah, like the week before school picture his yearbook picture from this year. I'm just like, oh,
Unknown Speaker 57:58
I might not see this. Yeah, he doesn't matter.
Emily 58:00
Yeah,
Scott Benner 58:02
no, no, my I have a photo of Arden. I mean, she was too. So she's in a diaper running around like a hotel room. And I mean, she looks like Keith Richards in the middle of the 60s. And I don't know how, like, none of us noticed that. You could see her ribs and she look like she was on a heroin bender. Like No kidding. Yeah. You know. So anyway, don't don't beat yourselves up. It's, you know, you're past that now. So let it go. Yeah. All right. Well, Mike, thank you so much for doing this. Would you be able to hold on one second for me?
Unknown Speaker 58:30
Sure. No
Unknown Speaker 58:31
problem Thanks.
Scott Benner 58:39
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 screened for type one.com To get more info and screen it like you mean it. If you'd like to wear the same insulin pump that Arden does, all you have to do is go to Omni pod.com/juicebox That's it. Head over now and get started today and you'll be wearing the same tubeless insulin pump that Arden has been wearing since she was four years old. If you were a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective. The bowl beginning series from the Juicebox Podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CDC es 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 type one diabetes diagnosis. The series begins at episode 698 In your podcast player or you can go to juicebox podcast.com. on and click on bold beginnings in the menu. If you're not already subscribed or following in your favorite audio app, please take the time now to do that, it really helps the show and get those automatic downloads set up so you never miss an episode. 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. Wrong way recording.com
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#1253 Can GLP Meds Impact Mental Health?
A mother of a 14-year-old with type 1 diabetes and bipolar disorder shares their journey, emphasizing the transformative impact of GLP-1 medications on her daughter's mental health and overall well-being.
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon 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
Hello friends and welcome to episode 1254 of the Juicebox Podcast
I guess today is going to remain anonymous. She is the mother of a 14 year old child with type one diabetes who is bipolar. And she's here to tell us the story of what GLP medications did for her daughter. 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 are 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. If you are a loved one has type one diabetes and you're a US resident, please consider going to T one d exchange.org/juicebox and completing the survey. That's all I need you to do. Head to the link. Join the registry complete the survey takes about 10 minutes and you will be helping type one diabetes research T one D exchange.org/juicebox. 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. This episode of The Juicebox Podcast is sponsored by touched by type one touched by type one.org. And find them on Facebook and Instagram touched by type one is an organization dedicated to helping people living with type one diabetes. And they have so many different programs that are doing just that check them out at touched by type one.org. This episode of The Juicebox Podcast is sponsored by Dexcom dexcom.com/juice box get the brand new Dexcom G seven with my link and get started today. Today's episode is sponsored by Medtronic diabetes, a company that's bringing together people who are redefining what it means to live with diabetes. Later in this episode, I'll be speaking with Mark, he was diagnosed with type one diabetes at 28. He's 47. Now he's going to tell you a little bit about his story. To hear more stories from the Medtronic champion community or to share your own story, visit Medtronic diabetes.com/juice box and check out the Medtronic champion hashtag on social media.
Anonymous Female Speaker 2:39
Hi, I am a mom of a kiddo with type one diabetes. She was diagnosed at three and she is now 14. And we have been on quite a journey that involves both mental health and the way her metabolism works. And we've been through a lot and I just wanted to share our story. Cool.
Scott Benner 3:01
All right. We're just gonna talk around the fact that you don't have a name we discussed before we started recording whether or not you would have a fake name or not. We're not doing fake names today. Your daughter is what how many kids? Do you have only child one of how many? I
Anonymous Female Speaker 3:16
have three kids, my 14 year old is the oldest. Okay, and so she has a she has a 12 year old and 10 year old siblings, any
Scott Benner 3:23
autoimmune stuff or other stuff going on with a 12 or 10 year olds, they
Anonymous Female Speaker 3:28
have a lot of stuff going on. Both of them are on the autism spectrum. And, and have ADHD.
Scott Benner 3:35
Okay, how about you? Do you have any stuff?
Anonymous Female Speaker 3:38
I don't have any official diagnoses
Scott Benner 3:42
you have any you'd like to make with Google and just your free time,
Anonymous Female Speaker 3:45
I find some of my tendencies that I would possibly be on the autism spectrum. I don't I don't have an official diagnosis. And I don't even know if they would give me one if I tried to get it now. You know, in the 80s, I was labeled a gifted child, which I think is almost synonymous with being on the autism spectrum now. So who knows? Yeah, there's a lot of overlap there.
Scott Benner 4:08
Do you have any implications in your life that stick out to you?
Anonymous Female Speaker 4:12
One of the biggest things for me is that when I was little, I was very sensitive about fabrics and clothing. And, you know, my parents didn't know what it was. And they just teased me about it my whole life. Pretty much everyone has always teased me about it as if I'm just crazy. But now, you know, there's manufacturers like the target brand has a whole brand of clothing that seamless for kiddos that are on the spectrum or have sensitivities to fabric. So it's just validating to know that it's a real thing and I still kind of have it and it's small. It doesn't affect my life that much. I say,
Scott Benner 4:47
Okay, how about your husband? Any medical issues or stuff like that? Or ex husband? Sorry, I didn't ask.
Anonymous Female Speaker 4:55
No, no, no, no, no other medical issues.
Scott Benner 4:57
The kid's father, the guy I'm not Hear what I was supposed to say there? I apologize.
Anonymous Female Speaker 5:01
Yeah. Sorry. The kid's father. Also my husband, same person. Oh, okay. She has no medical issues. Okay.
Scott Benner 5:08
All right. So how about like autoimmune throughout your family line, his side your side.
Anonymous Female Speaker 5:13
When we had kids, we would have told you that we didn't have any amount of autoimmune stuff in our family. After our daughter was diagnosed with type one. We recalled, I have a great aunt who had type one. Okay.
Scott Benner 5:26
All right. Let's see, did the kids have any other autoimmune stuff like celiac or thyroid or anything like that?
Anonymous Female Speaker 5:32
My diabetic kiddo, she just started having a low performing thyroid and as on levothyroxine for that. Oh, actually, my husband does have that
Scott Benner 5:42
too. Oh, this is Hashimotos? Or do we not? No, no, I
Anonymous Female Speaker 5:46
don't think so. He doesn't have a Hashimotos diagnosis. And seems fine.
Scott Benner 5:52
I have been described as low performing by my wife at times. Listen, the biggest problem you and I are gonna have today is that I changed my room around. And the thing I used to put my feet on when I was recording as I moved it now I'm sitting here and all I can think is like Why did you move that? You know? Yeah, I don't know what I'm gonna do. We need to take a break and
Unknown Speaker 6:13
get you know,
Scott Benner 6:15
I'll make do don't worry. So, you said you wanted to come on the podcast to share your story? What drew you to that idea?
Anonymous Female Speaker 6:22
What drew me to that idea? Is that what you said? Yeah, like what? Yeah,
Scott Benner 6:26
what makes you think like, I'd like to tell a lot of other people about what's happening.
Anonymous Female Speaker 6:29
So a year ago, my my type one kiddo started a GLP. One. She's on Wigo v. And I knew that that was pretty novel, for, you know, a young teenager that with type one. But we were desperate because we were really suffering in a lot of ways that I can get into in detail. Yeah. And I was starting to research it. And I was starting to see it sort of, and when I say research, you know, I just mean Google. I was starting to see it pop up on on different different support groups and in different articles, a little bit of research articles about it, but not a lot. And then I heard your podcast with another mom, whose daughter with type one was a teenager and was put on GLP. One and the success that they were having and her explanation and your explanation of sharing the story just so people know what's going on. Because I do think that this drug is going to revolutionize every area of healthcare, at least in our country. And it needs to be affordable. We are on our third appeal with health insurance to get this paid for. We have to sacrifice so much in our life just to pay for the medicine. And we already went through this five years ago when insulin prices were sky high.
Scott Benner 7:48
That's all very interesting. I can't wait to pick through every bit of it. So for clarity you listen to the episode called 15 year old on GLP. Yes, I did. And what about your daughter situation made you think about a GLP medication Dexcom g7 offers an easier way to manage diabetes without finger sticks. It is a simple CGM system that delivers real time glucose numbers to your smartphone, your smartwatch. And it effortlessly allows you to see your glucose levels and where they're headed. My daughter is wearing a Dexcom g7 Right now, and I can't recommend it enough. Whether you have commercial insurance, Medicare coverage, or no CGM coverage at all Dexcom can help you go to my link dexcom.com/juicebox and look for that button that says Get a free benefits check. That'll get you going with Dexcom. When you're there, check out the Dexcom clarity app where the follow Did you know that people can follow your Dexcom up to 10 people can follow you. Right now I'm following my daughter but my wife is also following her. Her roommates at school are following her. So I guess Arden is being followed right now by five people who are concerned for her health and welfare. And you can do the same thing. School Nurses, your neighbor, people in your family. Everyone can have access to that information if you want them to have it. Or if you're an adult, and you don't want anyone to know, you don't have to share with anybody. It's completely up to you. dexcom.com slashed use Box links in the show notes links at juicebox podcast.com. And when you use my link to learn about Dexcom you're supporting the podcast. Right now we're going to hear from a member of the Medtronic champion community. This episode of The Juicebox Podcast is sponsored by Medtronic diabetes. And this is Mark.
David 9:37
I use injections for about six months and then my endocrinologist at a navy recommended a pump. How long
Scott Benner 9:43
had you been in the Navy? Eight years up to that point? I've interviewed a number of people who have been diagnosed during service and most of the time they're discharged What happened to you?
David 9:53
I was medically discharged. Yes, six months after my diagnosis. Was
Scott Benner 9:56
it your goal to stay in the Navy for your whole life your career That was Yeah,
David 10:01
yeah. In fact, I think a few months before my diagnosis, my wife and I had that discussion about, you know, staying in for the long term. And, you know, we made the decision despite all the hardships and time away from home, that was what we loved the
Scott Benner 10:14
most. Was the Navy, like a lifetime goal of yours. lifetime goal.
David 10:18
I mean, as my earliest childhood memories, were flying, being a fighter pilot,
Scott Benner 10:23
how did your diagnosis impact your lifelong dream?
David 10:26
It was devastating. Everything I had done in life, everything I'd worked up to up to that point was just taken away in an instant, I was not prepared for that at all. What does your support system look like? friends, your family caregivers, you know, for me to Medtronic, champions, community, you know, all those resources that are out there to help guide the way but then help keep abreast on you know, the new things that are coming down the pike and to give you hope for eventually, that we can find a cure.
Scott Benner 10:51
And you can hear more stories from Medtronic champions and share your own story at Medtronic diabetes.com/juice box.
Anonymous Female Speaker 11:01
She has kind of a long story was she was diagnosed at three with diabetes, she was always very spunky and spirited. By the time she was five. It was concerning to me. And I asked her endocrinologist about her behaviors. And he said, he basically said I was being a bad parent, and that we just needed to be more strict with her. And he said this to me, there's no correlation between behavior and blood sugar. No. Fascinating. So I knew that was not true. And we got a new endocrinologist immediately. Yeah. But then it was like, okay, so we know when you're gonna when her blood sugar's low, or high or going up or down pretty quick. She's moody, okay, we get that. And we we lived with it through early elementary school. And it was hard, but it wasn't, didn't affect life too drastically, when she hit puberty at the age of 10. Everything hit the ceiling, fan.
Scott Benner 11:58
Everything, all of it. All of it. What happened, the
Anonymous Female Speaker 12:02
very first thing it was a month before COVID hit. And she was in fourth grade. And we found her laying on the floor in the middle of the elementary school just like really depressed and was like, I don't want to live anymore. And she's this tiny little fourth grader. And she was also was a boundary pusher. So our first reaction was all it was our reactions with her at the time, which was like get up, stop misbehaving, what are you doing? Which is not really how you should behave when someone is suffering from depression.
Scott Benner 12:36
That's not what you thought it was at the moment. Right?
Anonymous Female Speaker 12:39
Right. We really didn't. So then COVID hit the next month. We really, you know, we were trying to see providers, everything was on Zoom. Nothing was helpful. By December of 2020. We were finally seeing a pediatric psychiatrist. My child has walked in there, she has grown like a lot. She, you know, she's like five, three, by this point, she has gained a lot of weight. Not like in a sense that I would have put her on a Goby at that point. It was just enough to affect, you know how you're visually surprised. And I'm sure it was affecting her self esteem. Okay, and she dyed her hair black, and she just was drawing like sort of Goth makeup on all the time. She was looking down. She wasn't making eye contact. She was talking severely depressed. The opposite of you know, her personality a year before that. It just got worse. Yeah.
Scott Benner 13:32
So at this point, are you? I mean, it's obviously it's beyond like blood sugar fluctuations. And yeah, right. And you're thinking, depression at that point?
Anonymous Female Speaker 13:41
Yes, we're thinking depression. What do
Scott Benner 13:43
you do then? And have you been depressed or your husband in the past, or now
Anonymous Female Speaker 13:47
neither one of us had ever suffered from any type of mental health issue at that time? So it was all very new to us at that time. At that time?
Scott Benner 13:55
Like, don't worry, I'm working on one right now. Right,
Anonymous Female Speaker 13:58
right. Well, from COVID on when my daughter was really sick, I was depressed and had to get some help for that, because it was just so hard to deal with. She was requiring 24 hour care, we got to a point where she was a lot of suicidal ideation. She was trying to kill herself daily,
Scott Benner 14:16
like real I'm sorry, I hate to put it like this. But like real genuine attempts are like walking through the house going, I'm gonna run into traffic like what like, what level of?
Anonymous Female Speaker 14:26
Yeah, no, it was it was real. She'd always done this thing that we called going dark. Like her eyes would just kind of be vacant, and she wouldn't be there. And she would do an extreme behavior. And when she was little, it was like, she would lay on the ground and kick and scream right? By the time she hit puberty, and she was depressed. It was like cutting or I'm going to jump off this balcony. Or I'm gonna go jump off a bridge. Yeah, it was very, it was very severe. It was very hard to keep her safe. I mean, of course, she was in the hospitals a lot. But when she was home, we had to kind of be 24 hour vigilance with her. So you live 24
Scott Benner 15:04
hours like if you looked away, she was going to hurt herself. And it wasn't going to be something she had come back from. Yeah.
Anonymous Female Speaker 15:10
One day I was, you know, having dinner like serving dinner to my younger kids and she snuck into my room, took my blow dryer, took it up to her room and put it in the bathtub with her.
Scott Benner 15:22
How did that not hurt her? What ended up happening?
Anonymous Female Speaker 15:24
I think she forgot to turn it on. Every time there was an attempt. There's always like a silly undercurrent because she's a child, right? Like the first time. I think she tried to overdose on medication. She used something I can't remember it was but it was something silly. It was like that they won't kill you
Scott Benner 15:42
should just pick something that wasn't lethal. Right?
Anonymous Female Speaker 15:44
But not on purpose. She just didn't even know what she was picking. Right. One point. She was at her grandparents house and she overdosed she took a whole bottle of lithium. So like, some of it was very, very dangerous. Grandparents,
Scott Benner 15:56
somebody in your one of the grandparents is using lithium. Yes.
Anonymous Female Speaker 16:01
I haven't said that. We have a grandparent who is bipolar and is on lithium. Okay. So we eventually got my daughter a bipolar diagnosis. When we started seeing a flip between mania and depression. Mania looking like crazy nervous energy running around writing stories that were you know, 20 pages long doing art projects in the middle of night. hypersexual fetishes. And we're talking she was 1011 years old, say at what age? Yeah. Really, really strange and disturbing. And awful. Do
Scott Benner 16:42
you think that it's possible that my podcast will significantly decrease the population of the people who listened to because I always think that not just your episode, by the way, but when people are talking about their lives. I'm like, No one must like have babies after they listen to this stuff. Like, everybody just must be like, Wait, what did she just say? You know what? Forget it.
Anonymous Female Speaker 17:02
I hope that everyone thinks exactly what I would have thought which is, that's terrible for that person. I'm glad it can never happen to me. I mean, that is the funniest thing. When I think about my husband, I when we got married, when we started having kids, we were like, Oh, we are so lucky to not have any health issues. Yeah,
Scott Benner 17:21
we're gonna cruise to this thing. If we can just make a little bit of money we might get might get a beach house out of this. Yeah, right now. Yeah, no one tells you, you're gonna spend all of your free time learning what Pre-Bolus thing means? Or what sexual mania looks like in a 10 year old.
Anonymous Female Speaker 17:40
Terrible, terrible things no one should have to know. Which is why I want to talk about what has worked for her, right. I want it to work for other people. But really, I want to be able to afford it.
Scott Benner 17:50
And she's in a different situation now, obviously. Yes. Okay. She's
Anonymous Female Speaker 17:54
in a different situation now, which is the only reason I would be on a podcast or really the only reason I can talk about it without just crying. I'm just
Scott Benner 18:00
gonna say you're just be banging your head on something if for you, if you're if you were still going through it. I've actually talked to people in the middle of things. And they don't frequently joke about it. So that's, that's usually the the people who feel like they've moved through it a little bit. So okay, so like, all this is happening, you get that? That bipolar diagnosis? What do you like? How do you get her to a different situation? Because I'm trying to tell you, like, I genuinely don't know what you're going to say, You did this thing. I don't know if you know, the phrase tickled my ass with a feather earlier. Because you said like, you were like GRPs are gonna revolutionize everything. And now I'm just sitting here like wildly wondering, how is that going to tie into what you're saying right now. But don't rush ahead. Like you're doing a good job telling the story, but I just, I can't wait. Super excited. Good.
Anonymous Female Speaker 18:49
You know, my husband and I are are pretty well educated. And we had a lot of resources available to us. So, you know, we were lucky in that respect. We did live in kind of a more rural area at the time. And so it was a lot of driving to get to the providers, but they were assessable. So we started seeing everybody, right, obviously we have our endocrinology, we have our pediatric psychiatrist. We had all kinds of different therapists, we were doing something called dialectical behavior therapy. The abbreviation is D as in dog DBT, which is the recommended therapy for folks with bipolar. This child was in and out of inpatient hospital stays, she did a residential stay for 15 weeks. At a long term facility that's a third of a year. Yeah, it was a very long time. And I will tell you when she came home, she was a little bit better but not really better. Oh, and
Scott Benner 19:44
what size cardboard boxes you have to move into after paying for that
Anonymous Female Speaker 19:49
exam? Exactly. We have not had the best of luck with insurance but in that time, we were lucky insurance did cover that patients day. So they they covered that and they covered the hospital stays, but they weren't covering therapy, which we had to do all of the time. And everything was just out of pocket. So it's like, you know, $200 a session, two sessions a week driving
Scott Benner 20:10
to and from. Yeah, taking off time from work. I imagined to make time for everything that comes with all that. Yes,
Anonymous Female Speaker 20:18
she's alright. Okay. I was I actually was home with my kids, for many years, about eight years. So I was home with them during that time. Oh, I see. I'm back at work now. Which is part of the story. I bet
Scott Benner 20:35
you are. I bet you were like, hey, hey, my long term and short term to do list is get out of the house.
Anonymous Female Speaker 20:40
Yes. Yes, it is. Yes. Feels like a summer vacation.
Scott Benner 20:44
People are going to work going is fantastic. Yes, so long term stay facility. marginable. Like improvement, nothing like you weren't like, wow, this was worth three, four months. Like that. It was
Anonymous Female Speaker 21:01
worth four months, because she did learn some skills. And my husband and I did get a break. Okay. Which is terrible. Because you miss your kid when they're away and not supposed to be away. I mean, she was only 12. A lot of the care and the training that we got was that, you know, the caretakers have to have respite? The caretakers have to have time to breathe. You can't you can't care for a kid 24 hours a day, nonstop.
Scott Benner 21:23
Do you have any guilt during that time? Because I'm assuming? Yeah, I'm assuming at some point during it, you're like, This is better like this. And but she's still somewhere struggling and, and you know, she's gonna come back. So like, yeah, that would make? I mean, did that happen to the guilt? Yeah. For being relieved when she wasn't there is when I was
Anonymous Female Speaker 21:42
really? Absolutely. I mean, I had, so I had so much guilt to work through. One of the things with my daughter is that early on in our diabetes, we had tried kind of a low carb lifestyle. She just increasingly started hiding and sneaking foods. You know, once I realized that was what was going on, we stopped the low carb, but it didn't stop her behaviors. And she is a huge binge eater, especially, especially when her mental health deteriorated, and she was going into mania. Like she would just like she was just jonesing to get into a pantry and write it, like just completely addicted to binge eating.
Scott Benner 22:23
I have to ask you something. And I don't want to ask this as a leading question. But I keep waiting for somebody to say they want to come on the podcast because they chose an eating style. And it led to something that they didn't expect. Do you mean, obviously you don't know for sure she's got other issues. But do you have that? wondering like did low carb make her be like, Oh, I'm just gonna get a cupcake somewhere else?
Anonymous Female Speaker 22:50
Yes. You feel like it did? Yes. And you're right, she does have other issues. And her relationship with sugar is i It is not the same as what I've seen and other folks with type one and that they don't have these mental health issues. she I think she just has that addiction piece of her brain. And sugar fills it any kind of dopamine. Gotcha. Yeah, I
Scott Benner 23:13
mean, I don't genuinely don't mean to say like, you know, eat low carb, you're gonna end up binge eating. Like, I'm not saying that. But I have always in the back of my head thought. I guess someone gonna one day be like, you know, I tried to make my kid be a vegetarian. And now they just eat hamburgers on top of hamburgers or like you like that kind of an idea. And then you felt like you almost said that. And I just I wanted to make sure that we picked through. And that's
Anonymous Female Speaker 23:36
how I feel about my child. I definitely have guilt that I tried to get her to do this. You know, basically, diet that maybe wasn't best for her mental health. Definitely would have been great for her physical health, but was not good for her mental her mental health. Okay, you know, if people say they're going low carb, I don't say don't do it. You know, they'll be binge eating right, but it does hurt my heart a little bit. Be like, Oh, is that worth? What if? What if there? What if their mental health is more fragile than you realize?
Scott Benner 24:05
Yeah, right. Like, I see what you're saying. And I'm very listen, I'm very careful about it for a couple of reasons. One, because it's not talking about how people eat is just like talking about Jesus or politics to them. You don't I mean, and I don't have that feeling about it. Like, I don't care how people eat at all. I don't want to give the idea that, you know, I'm like, Oh, don't do this or anything because of that, because I don't think that's true, but you know, interesting outcome for her at the very least. Okay, so she now she's so she's binge eating. And you're like, Oh, hey, you can have carbs back. But that doesn't stop
Anonymous Female Speaker 24:40
it after that. Right and we took cards carbs back in first or second grade. So it was a long time before the mental health deterioration, so Okay, all right, all through elementary school, different types of binge eating. She always had really weird reactions to ice cream. Ice cream always made her quote, go dark. To us
Scott Benner 25:00
pretty much just eating it or talking about it or what are you saying? Yeah,
Anonymous Female Speaker 25:04
eating it. The effect on her blood sugar no matter how we dosed for it, even if we didn't even see her blood sugar change on the CGM. Whenever she ate ice cream, she would go dark.
Scott Benner 25:15
Yeah. Is that something that you've talked about subsequently with healthcare professionals about? Like, what's that going dark thing is?
Anonymous Female Speaker 25:21
Yeah, yeah, not in depth. I mean, we've mentioned it to the psychiatrist. There's just so much going on with her. I've told the psychiatrist, so many things. I finally now have a psychiatrists that kind of believes what I'm saying. My last two did not believe.
Scott Benner 25:36
Oh, what did they not accept from you when you were sharing?
Anonymous Female Speaker 25:42
They all thought it was just like parenting techniques,
Scott Benner 25:45
or your other two kids struggling with things like I mean, you don't mean like this, but could you step back and go, maybe I am making a mistake somewhere. Did you try looking at it?
Anonymous Female Speaker 25:54
Yeah, no, I mean, I've read I read a parenting book a week. It is. My friends making so much fun of me. I read a parenting book a week, and maybe it's my coping mechanism. And when I got sick, my husband and I completely changed the way we parented, we follow this thing called the nurtured heart approach. Just it's really, really a lovely way to think about children, and to always give your energy to their positive actions and not give any energy to their negative actions. Not that they get away with everything. It's just that you don't freak out when something bad happens. You just do the like calm consequence. Right? And then as soon as you're good again, you start heaping positive energy on them again. Okay,
Scott Benner 26:37
so you went with the gentle parenting? Yes, that's a little bit in the world right now. That's why it's under fire a little bit in the world. Yeah, there's a push back on it. Now, what was your finding? Doing it? That's why I'm asking what would you learn from it? Even
Anonymous Female Speaker 26:55
when our daughter was sick over the last few years after we changed our parenting approach, she and I and my husband have the best relationship. Okay, like, when her brain is not on fire from this illness, she is the best kid, like, loves to hang out with us is funny is caring is nurturing. Like, she takes care of like, she loves to take care of like little three and four year olds that we have with family friends, she's just to make straight A's now, like she is just wonderful. When her brain is
Scott Benner 27:27
not looking for a bridge to leap off of anymore. Nothing like that's happening now. Not
Anonymous Female Speaker 27:32
anymore. It did happen last up until last year. Okay. All of that was still happening. But when in when she was having episodes, but when she wasn't having episodes, the parenting techniques were working like she was lovely. We had a great relationship.
Scott Benner 27:46
I am so like, you are you're so good at this. I don't know if you're doing this on purpose or not. But like I have, so I have something in my head right now. And I'm like, is she gonna say this happened? And then this happened. And then that happened? Like I haven't, I should write it down so that I look like hold on a second. I don't want to look like I'm, there's no way for me to prove what I'm writing down right now. But I'm gonna write down what I think you're gonna say, Hold on. Okay, one lead to
Speaker 1 28:11
lead to. Okay,
Scott Benner 28:15
I've written down what I think you're going to say. And if that's what you're gonna say, I'm gonna go get the cat here when you say just so you know. And then I'm gonna say, you should say that. Okay, all right. By the way, what are you a storyteller for? Like, like, our profession or something like that? I'm like, is this whichever going to eat the little kids or not? This is crazy. Seriously, doing that. Have you ever been on a podcast before?
Anonymous Female Speaker 28:38
I guess I have technically been on a podcast. I ran for office like a long time.
Scott Benner 28:43
You know how to talk to people. Okay, all right. So
Anonymous Female Speaker 28:47
but I don't think I'm that great at it. No, listen,
Scott Benner 28:49
you're doing great for me. Ah, thank you. I have none of that. Like you have to talk pressure switch. Which no offense to the people where I have that that fracture, but I enjoy not having it once in a while to. Alright, I'm sorry. Keep going.
Anonymous Female Speaker 29:03
It's okay. We've just been through so much. There's so much to say. Yeah. And I think I've I've practiced telling this story, because I've had to write the appeals to the insurance company so much.
Scott Benner 29:13
Well, that's interesting. Yeah. And you had to repeat it to doctors who didn't believe you over and over again to
Anonymous Female Speaker 29:17
Yes. Which is mentally exhausting.
Scott Benner 29:21
Especially if you're right, like, I mean, it would be different if like somebody like, got you one day and you're like, you know what, they're right. I'm not, I'm getting this wrong here. But like when you keep saying like, look, this happened, and this happened and this habit, it does make you feel like you're out of your mind.
Anonymous Female Speaker 29:35
Yeah, yeah, you know, really hard and my husband is great. And we're on the same page. But when we started this new parenting technique and approach, he basically didn't talk for like two or three months. He was like, I don't know how to talk to her without just correcting her constantly, because she was so fiery and oppositional and
Scott Benner 29:57
hard to talk to you. Yeah. Fiery.
Anonymous Female Speaker 29:58
What a great word. On top of all of that, she had, you know, she had a pump and her CGM. And she did not. She was just more than burned out on diabetes care. And we could not get her blood sugar's under control, because I don't know how to put this as she wouldn't allow us. Like, she wouldn't tell us what she was eating. She would hide food, she would constantly constantly eat food and it deny it and not dose for it. And I mean, we were just battling 400 blood sugars all the time.
Scott Benner 30:31
Was she able to weaponize her mental health issues? Yes, to keep you away, like almost like a little terrorist. Yes, like, absolutely do this. We're gonna do that. That kind of thing.
Anonymous Female Speaker 30:41
Absolutely. And then as she got more sick, she weaponized her pump. Two times she tried to kill herself by overdosing on insulin.
Scott Benner 30:50
She get did she get the insulin in? II? Yes, yeah. Then we'll How did you manage it?
Anonymous Female Speaker 30:55
We might have used glucagon one time, and food the other time, okay. Because once she got really low, she kind of lost the urge to die. So she's just like, I feel like crap make me feel better.
Scott Benner 31:07
That makes it go away pretty quickly. The Yeah. No, that's interesting. Isn't it? Wasn't that interesting? Because isn't that really interesting? You know, like, like, cuz if someone's trying to take their own life, it's gonna happen instantaneously, normally, right? But I guess if you do it in a, in a way that gives you time to re reconsider. Maybe there's that part of your body, that part of your brain wants to be alive. It's like, whoa, hold on. I don't want to feel like this anymore. It's is
Anonymous Female Speaker 31:35
that right? It's like death. It's fine. But feeling bad right now is terrible. Okay, interesting. Okay. All right. Yeah. So she did that. And then a couple times, we'll often when she was at these hospitals, you know, these hospitals are busy. The Child Nurse ratio is not very good. So she could get away with a lot. So like one night, we sent her to a hospital. And every time I had to fight to keep her pump on, of course. And then the pump had a lock that she wasn't supposed to know. And then inevitably, she would watch a nurse put in the lock, and so she would get it. So we'd have to warn them not to let her watch that. And then one night, she went to a facility. I told them she binge eat, they needed to control how she has access to food. So they're like, oh, yeah, we're still on COVID protocols. She just gets a tray. It's fine. Well, the tray was actually a cart with like three kids foods, and like all these condiments, so she drank a glass of maple syrup for dinner. Without dosing for it, by the way. Yeah. And then actually, for some reason, though, yeah, they made us think that was the time they made us take her pump off. So she was back on Lantis. Before the syrup, the nurse she was low, and the nurse didn't give her Lantis because she was low. So I had already called multiple times trying to fix that misunderstanding. The endocrinologist had faxed the place, they still wouldn't give her Lantis I said, You're going to kill her, you're gonna send her to the hospital to like the ER. This happened all night long. And then she woke up and then she had the glass of maple syrup for dinner. I think she even then ate the dinner on top of that. And then she of course, she woke up at like seven in the morning, and her blood sugar was over 500. And they're like, Oh, we're gonna send her to the ER now.
Scott Benner 33:21
Yeah, they didn't want to be involved. Right? Yeah. And they didn't understand the Lantis was the background and so on. And what they were fearful about during the low would have been the fast acting, not that etc. Like, none of that exactly. made any sense to them. And then then once the number hits a certain thing, they're like, Oh, we're out of this. We can go put this on somebody else.
Anonymous Female Speaker 33:39
Yeah, yeah, you're probably right. That's probably what's going through their heads. But I mean, we've been through this before. And we were at the point where we didn't want the child in an ambulance anymore, because none of the ambulance bills are covered by insurance. And so and they just go Drupal charge what they should for them, right?
Scott Benner 33:56
Yeah, suddenly, it's a $700. Uber, urine. Yes,
Anonymous Female Speaker 33:59
it's exactly what it is. Like, so we were not happy about that outcome. So she she did weaponize her pump and her insulin. And then when she was at her 15 weeks, say, at a residential facility, she refused insulin. And I don't know, they were like, well, we can't make her take it. If she refuses it. We can't force her to how
Scott Benner 34:21
old was she? 12. Well, Why could they not force her to take it?
Anonymous Female Speaker 34:27
I don't know. They seem to think it was a legal liability.
Scott Benner 34:30
This is the other by the way. Over the years, the conversations I've had around mental health facilities and type one have never been uplifting. You know, like, even if you're lucky somebody let her in. From what I understand, you know, well, and I
Anonymous Female Speaker 34:44
will let me tell you this, this. So this facility we're at, I actually think it's a very good one. One of the kind of the vice president folks has type one and is on a pump. And she has been an amazing advocate for the kids with type one and they have A lot of type one patients and they let them bring their pumps in. Okay. So that was amazing. But that's when I started noticing this overlap between kids with these extreme behavioral issues and type one type one was that there shouldn't be that many type one kids here, there's only 20 kids here. And
Scott Benner 35:18
word gets out that we let type one kids in here. And then you get them all together and you start thinking like, man, their issues all seem so similar.
Anonymous Female Speaker 35:26
Yeah, yeah. But of course, everything's private, so I can't really, yeah. Right. But I'm just noticing it right, we're just noticing as we go along, and it's clear that her behaviors and her blood sugar are extremely related. And it's also clear that her behaviors with high and low blood sugars are not the same as my nephew also has type one. How long has your nephew had type one for? He was diagnosed two and a half years ago? Just recently
Scott Benner 35:53
and nephew? On your husband's side or on your side?
Anonymous Female Speaker 35:56
This is on my side?
Scott Benner 35:59
And then the bipolar grandfather's yours?
Anonymous Female Speaker 36:03
Nope. Husband.
Scott Benner 36:04
Oh, you got the you got the stew. You got the I see what happens. Okay, so lucky. Yeah. Boy, this should have been in the questionnaire on your first date. Yeah, don't put me in charge of dating. It won't be as sexy. I'd be like, Well, you got a great grandmother with celiac. My father and my great grandfather's got now I'm not having a baby with you. Nevermind. No, no, we can date if you want. We're not getting married having kids. I don't like the way this is looking between the celiac and the I got I got a little inflammation over here with the with the bipolar thing. And then I got I got I got thyroid thing with my mom. I know that we're good. No, no,
Anonymous Female Speaker 36:48
no, thank you. You laugh, but that guilt hitch hits you
Scott Benner 36:52
to God damn. Right. It does. And I'm just telling you give me a time machine. I run Kelly through a real quick questionnaire. And I'm like, we can still go to this movie if you want. But I'm not paying.
Anonymous Female Speaker 37:06
Adoption for us people. Yeah, yeah,
Scott Benner 37:08
I'm going to do something very, very, very upsetting in the middle of this movie. So you never want to go out with me again. Oh, I did that. Not even on purpose. It just happened. And anyway, it's such an odd thing to think you meet fall in love with somebody. And, you know, no kidding. Like, on their side, there's this and on your side, there's that and then one day this is gonna happen. And there's a reasonable likelihood that all of that led to it. Just such a
Anonymous Female Speaker 37:35
strange thing. You don't I mean, it's it is so strange. And I know everyone probably thinks this about their child, but my child is. She's super woman like she is a force to be reckoned with. Yeah. And the fact that she's overcoming all of these things in her life, you know, that just adds to your character? No, of course. Not that I would wish it upon her. The other
Scott Benner 37:59
side of what I just said, but I hear what you're getting at. Yeah, no, it's I mean, you caught her fiery, I couldn't tell if you were like, You have no idea. Or if what you meant was like, you know, she's got a lot of like backbone and spirit, or maybe it's a mix
Anonymous Female Speaker 38:12
all of those things. Yeah. All of those things. So you know, her her grandfather, who does have Bipolar, he was not diagnosed until he was retired. He just he was just a very successful happy person, you know, had a surgery and then fell into depression. And that's when they figured out
Scott Benner 38:33
no way so never never had any mental health issues through his entire life. Right after he retires has a surgery can I can I know a little bit about that? Is it heart heart related? No.
Anonymous Female Speaker 38:47
I don't remember what it was. It wasn't it wasn't even a big deal. It was just the fact that he went under like it can trigger something
Scott Benner 38:55
rather came back out a different person. Yeah. Yeah, keep your Biden's kids. No, I'm just gonna
Anonymous Female Speaker 39:02
write honestly to him. Like once you get treated he takes his medication. He does not really he does. Okay, deal thinks it might be a misdiagnosis. Just Oh,
Scott Benner 39:13
he thinks he might be misdiagnosed as bipolar. Right. That's what he's that's how he feels. I gotcha. Well, I don't know. All this medication works for him. Great. So perfect. I'm sorry. You were saying something and I waylaid you. I apologize.
Anonymous Female Speaker 39:28
Oh, that's okay. Yeah. So he, he has bipolar and he doesn't have any autoimmune issues. But his relationship with sugar is interesting. It's always you know, he's he has a sweet tooth. That's what we say. Right? As a sweet tooth, but it's a pretty intense sweet tooth. And he was the first person I knew to go on bulgogi.
Scott Benner 39:50
Okay, so he had a weight issue at that point. Yes. Okay. And he starts taking we go refer for weight. How long goes it has to be in the last couple of years, right? Yeah,
Anonymous Female Speaker 39:58
he was the first person so it's like Three years ago, okay, like he was he has really great doctors and they're like, oh, it's new. It's groundbreaking. So he went on that and very good for him very successful in terms of weight loss. You know, all of you've heard all these stories, all of his blood work came back better. He couldn't walk his ankles, his knees hurt. All of that went away. Now he could walk happily. He was pre diabetic. He's not pre diabetic anymore.
Scott Benner 40:23
Yeah, partially speaking. I have that story. Like, you know, something. I'm literally sitting here right now, in a pair of shorts, looking down and thinking, whose legs are those? I'm still in that part where all my guys still gonna look like me. You know? Yeah, no, it's not. So he goes through the process as you do you, you start slow. They ramp him up. He loses, you know how much weight he lost over time?
Anonymous Female Speaker 40:49
I don't, I would guess maybe in the 60 to 80 pound range. Okay.
Scott Benner 40:54
And he now looks like average build or do you? Do you look at him and think, Wow, that was a lot of weight you lost but if he lost more, it would still be
Anonymous Female Speaker 41:01
okay. Yeah, he's just average bill is Average Bill tall. He's a tall, big person. So but yeah, like average, like not, not overweight, and he's
Scott Benner 41:09
still honored as maintenance. Yeah, okay. Yeah. All right. And so what do you think? Did he have any other changes in his life besides his white?
Anonymous Female Speaker 41:20
Do you feel a lot happier now? He's always a happy person. But he's a lot happier now.
Scott Benner 41:28
Interesting. Do you think just because he feels and looks differently? Or do you think there's something else?
Anonymous Female Speaker 41:34
I don't know. All right. I mean, definitely feels and looks different. Right. Like that definitely helps. And I do think he was getting depressed because he couldn't walk. Yeah. I don't know if there's something else happening. I know with my daughter there is. I don't know about him.
Scott Benner 41:49
So you see him have this experience with the widow of a your daughter has similar situation with the I'm assuming you also saw with him the arresting of the desire for the sugar, right? Yes. That's got to be what attracted you first for your daughter? Yes.
Anonymous Female Speaker 42:07
Yes. So I saw him go on it. And then I have two very good friends. A close group group of girlfriends. Two of them went on GLP ones. Both of them really struggled with food noise.
Scott Benner 42:22
Do you know that term? My wife uses that term? Yeah,
Anonymous Female Speaker 42:25
yeah, yeah, food toys. Like I just always want them to always think about my next meal. I'm just kind of kind of obsessed with it. That was the big thing. This medicine cuts down on my food noise. I don't think about it that much. And oh, this other friend stopped biting her fingernails because it just takes away like your compulsivity, your impulsivity, interesting, or compulsions. And that's my daughter is extremely was extremely impulsive, and compelled to do crazy things. In the moment. When she was really sick. She was pushing boundaries. Like, one day when she was really little. She said, What's hitchhiking? And we were like, Oh, this is hitchhiking. But it's pretty dangerous. So people don't do it anymore. You know, you can't do it. And the next day, she went out in our neighborhood and hitchhiked, did she get picked up? Luckily, it was a neighbor's husband, who
Scott Benner 43:07
was like, I don't know if you've heard the stories about the house up the street, but I got the little girls out in the road, trying to thumb her ride. So I'm going to pick her up. Yeah, take her home. I got you know, I It's nice. You take her for a lap first, and you just bring it right in?
Anonymous Female Speaker 43:21
Oh my gosh. Well, he was just kind of like, shy and awkward and just dropped her off. And then the wife called me later and said, I'm so sorry. You didn't come in. You know, I just wanted to let you know what happened because I had no idea. I didn't know she was gone. And then she'd come back. It was so quick. I love
Scott Benner 43:34
that you can do the voice for women apologize for their husbands. I didn't realize that was a voice that people could just snap into. I'm sorry. He didn't come in. He's He's feral. He didn't know he just he did push her out of the car gently in case you're right. Yeah. So ridiculous. So you have two friends started GLP is they had these. They lost weight as well. They had dissociation change.
Anonymous Female Speaker 43:56
They lost weight. One of them was having problem with their liver. The liver enzymes were better or the cholesterol was better. One of them has like a kidney disease. The numbers for the kidneys were better.
Scott Benner 44:05
Yeah, everything you should see my bloodwork. It's legit. Yeah, it really does. The doctor. She mumbles to herself looks perfect. It's beautiful. Like it's like a kid she said last time I was like in my ear. I was like too sexy back up a little bit. Cuz she was like listening to my heart. She's listening to my heart and she goes like a kid. And I was like, yeah, like see, it was just really like Fantastic. Okay, go ahead. I'm sorry. Keep going. What else did you figure Okay, so
Anonymous Female Speaker 44:33
So my my kiddo is suffering. They are bipolar. They are manic, depressed, manic depressed, hypomanic. All these all these things we cannot get under control. You add the blood sugars on top of that. We can't get them under control. It's just it's just impossible. You know, like we know all the techniques. We've listened to all of your podcasts wherever at all the books like I know how to manage diabetes. My poor nephew when he got diagnosed, we were able to to help help their family Lee, no problem
Scott Benner 45:00
because you had the tools. He knew this stuff it worked on him wouldn't work for your daughter. Exactly. You are you are embroiled in what is classically known as either a show or a dumpster fire. Am I right?
Anonymous Female Speaker 45:13
That is exactly right, gotcha. That's exactly what was happening. Okay. So of course, in the mental health space, we're trying different medications, you know, they put them on mood stabilizers and antidepressants and different things to bring down mood and bring up mood, and most of them increase the appetite. So we know that we're like, we don't care about appetite. Right now, we just want this kid to feel better. Sure. So so we couldn't find any medication that would work. It was like it would dull her spirit a little bit. And there are some that would make her so drowsy, she would sleep a lot, but nothing was like carrying the darkness, and the mania and the depression. Like nothing was touching it. Lithium had worked for our family member, so I was fighting to get her on lithium. Doctors do not like to prescribe that for young people. Doctors don't even like to diagnose bipolar in young people. There's a debate on if you can even have Bipolar as a young person. So look at
Scott Benner 46:06
all the stuff you've learned that you didn't want to know about. Right. And I've read
Anonymous Female Speaker 46:10
a lot of books on that. And I definitely did not want to read those books. So finally, we got her bipolar diagnosis. You know, I told you I had a psychiatrist who was not believing me and I was like, you know, this child is really sick today, this child, this is the day the child ran to jump off a bridge, I had the child in the car, they they pulled the steering wheel trying to run us off the road, like it's too dangerous us. I need something and we need to change the medicine. We need to change the medicine. And the doctor would say, Do you really think a pill is going to fix all this? Did
Scott Benner 46:37
you just go? I don't know. But don't you think we should try something?
Anonymous Female Speaker 46:42
What do you want me to try? Because we've tried everything. We've tried every parenting method. We've tried every type of therapy. I
Scott Benner 46:48
just wrestled a steering wheel out of an 11 year olds and can we let's go for that here. Because I mean, yeah, living in a cave is my next idea. It was,
Anonymous Female Speaker 46:58
I mean, the plan, it was like, because because at this point, my child is full grown, right? Like she is strong and my size. And if she's dark, and she wants to do something, I can't physically restrain her for a year, I was physically restraining her from jumping out windows. Yeah. And this is not just like being bratty or going to jump out the window. This was like, I need no, I need to do this right now. I need to kill myself and be out this window. She snack or something. And nobody understood it until they're in the moment. I remember being at a festival with my brother and best friend. And they had never seen my child go dark. And she went dark. And she just walked down into this lake. That was not a lake that people's women, like everyone was wearing clothing at a festival. And she just walked in the lake and just sat there and stared into space.
Scott Benner 47:46
Those people were like, Oh, is this what you've been talking about? Yeah. And they go, you should get a therapist right now for yourself. Because that's what I would have
Anonymous Female Speaker 47:55
said yes, everyone. Everyone said that. And I did very, very happily. Yeah, there was a lot of what do you guys doing for yourself? My husband and I had to figure out self care, because really, before that we'd been spoiled. And you know, I
Scott Benner 48:09
know I take your point. Cheese. All right, listen, go ahead, do it. Say the thing.
Anonymous Female Speaker 48:18
So I'm fighting I'm fighting for lithium child is getting sicker and sicker and more dangerous behaviors, binge eating, she weighs. Probably one point. She was like, 240. At what height and what age? She was 5657 and 13.
Scott Benner 48:39
Okay, so she was significantly overweight, then. Yes, yeah.
Anonymous Female Speaker 48:44
Okay. Yes. My husband's not every way, but very tall dude. And his clothes weren't fitting her. And that was the first time she realized that she was very, very upsetting. So but we couldn't get her stable. Like, I didn't care about our weight. I just wanted her to feel. Of course, she wanted to be alive.
Scott Benner 49:00
I understand. Oh,
Anonymous Female Speaker 49:02
it was so hard. So last June, June of 2023, she went to another facility. And it was one we'd been to before. You know, the doctors. They see the child once the child, the child is there five to seven days, you know, they're not like a, like a primary care doctor. They don't see these children a lot. They're just trying to get them stable and out of there. They're usually not the best doctors. But this one actually listened to me. And I said, you know, we have a relative that lithium really works for him. Can we try lithium? And he said, Well, yeah, lithium is the gold standard for bipolar. I'll prescribe that for her right now. And about fell out of my chair. And we started the child on lithium and the suicidal ideation stopped. That's correct. It was great. It was really really great. Very scary because it felt like this is what I've been fighting for. And it was like the last poll suicidal ideation stopped but all the other behaviors didn't stop. Like she was still going dark and she was still really anxious and weird and binge eating and fidgety, and it's hard to describe.
Scott Benner 50:15
Now, I feel like you're doing a good job. Darn
Anonymous Female Speaker 50:18
Hey, so the other behaviors didn't stop. So she was not trying to jump off a bridge, which was great. But she was still like obsessive and would get crazy looks in her eyes and just be like Mom, mom, mom, mom, I really, really have to, I really have to do whatever the thing is. So the next month after that, I put her on we'll go V, the GLP one and July of 2023 By September, so two months later. So we're only on the second level dose of wiro
Scott Benner 50:48
V five at that point, right, you start point two five than point five, right? Okay.
Anonymous Female Speaker 50:55
By the by that point, she was a different person, how she was what I would say herself, she did not have that darkness. Her like, huge, wonderful, fiery personality was just there all the time without the darkness like she was just sweet and fun and could listen and talk and could go to school and and could function at school. She had missed basically all of sixth and seventh grade because anxiety would hit her within 30 minutes of being there and she'd be stalking the halls trying to find something to hurt herself or, or do or not feel good. So she'd Miss like all of sixth and seventh grade eighth grade. She went to school every single day.
Scott Benner 51:40
She losing weight at the same time. Yeah, she lost all the weight. Okay, can I read to you for a minute while you collect yourself from our computer overlords? Chat GPT 4.0. Hold on a second. I've asked it could GLP have a positive impact on bipolar as all acid GLP one receptor agonist agonist, commonly used for the treatment of type two diabetes and weight management have shown some promise in neuro psychiatric conditions including bipolar disorder. While the primary action of GLP is to regulate blood sugar levels and appetite. There is growing interest in its potential effects on the brain due to its neuro protective and anti inflammatory properties. So I wrote down, took GLP lead to less inflammation, reduce mental health burden. That was the three things I wrote down. I'm guessing it goes through what neuroprotection cognitive function mood regulation, inflammation reduction. Research is limited right now to animal studies, human studies or unlimited clinical trials, directly investigating the impacts GLP one receptor agonist on bipolar disorder, mechanical understanding potential mechanisms, the GLP, one receptor agonist in neuro psychiatric conditions are being explored. A comprehensive understanding is still lacking more research is needed to see how these medications interact with the brain and influence mood and cognitive function. But you not a doctor, not a researcher. You'd bet a couple of dollars that the GLP took care of what what do you think it did for?
Anonymous Female Speaker 53:15
Yes, I'm definitely not a doctor or researcher. And I don't even have any type of medical background. But my daughter was in constant flight fight or freeze mode. You could just tell like her nervous system constantly thought it was in danger. And she was reacting. And I do think that her brain was inflamed in some way. Every like holistic specialist I seen everyone was like, oh, everything's inflamed inflammation, inflammation, how do you get rid of that? You know, I couldn't do very much with her diet. And when she took this LPWAN was like, everything just worked the way it was supposed to work. The combination of these medicines, right so like, we did have a good mental health drug for her. She the lithium was was working to a certain extent. And then we added the GLP one and everything worked the way it was supposed to work. You could just tell like, she could just get up in the morning and do things and she wasn't agitated and she wasn't angry. And she was happy to be around people and social and normal and functioning. Like I said, she went to school every single day. She made straight A's. She loved learning. She was not obsessive about things. She would just eat food like a normal human, which is terrible to say but it was just so nice. Like for years I haven't been able to keep any type of prepackaged food in the house. Just rip through it. No matter what. Just grab it should just grab it grab and go. You know, it's hard to pack lunches for little kids when you can't have anything that's wrapped.
Scott Benner 54:50
Yeah, no, I hear what you're saying. Like you can't be like, it's not Little House on the Prairie. You can't make everything from scratch. Right? Yeah, believe me.
Anonymous Female Speaker 54:59
I tried Well,
Scott Benner 55:00
so the GLP wanes, it's not it's not really a seven day drug, you know what I mean? So like, do you notice any return of problems? Like day six or seven before the next injection? Yep,
Anonymous Female Speaker 55:14
you do? Yep. Oh, absolutely.
Scott Benner 55:18
Are you paying for this in cash?
Anonymous Female Speaker 55:20
Yes.
Scott Benner 55:21
Is it like $1,200 a month?
Unknown Speaker 55:23
Yes.
Scott Benner 55:24
Are you wealthy by any chance?
Anonymous Female Speaker 55:26
No. We,
Scott Benner 55:30
I just want to say, well, I could feel better
Anonymous Female Speaker 55:35
doing this, but it is. It is tough. It is tough. Wow. You know, we're in a position where we can make it work. But at the sacrifice of other things.
Scott Benner 55:43
She on the 2.4 1.7
Anonymous Female Speaker 55:48
gone all the way up, and then we went back down.
Scott Benner 55:50
How much weight did she lose?
Anonymous Female Speaker 55:53
Let's see. She went from 240 to 160.
Scott Benner 55:57
Jesus, good for her. She's a little skittish over where the chart wants her right now. 15 pounds, maybe? Am I right? Doing the math in my head. All right. Yeah, that's astonishing. Yeah. Oh, she's so happy.
Anonymous Female Speaker 56:12
She's so happy. She started a part time job last week as a cashier at the local grocery store for her. made me cry.
Scott Benner 56:22
I just cried. I hope everybody's
Anonymous Female Speaker 56:24
okay. You said it is the best.
Scott Benner 56:27
Okay. Wow. Wow. So in your heart of hearts, you'd inject it every five days if you could?
Anonymous Female Speaker 56:34
No, because we still deal with the other side effects of nausea and growing up and whatnot. I wonder
Scott Benner 56:41
if you see, this is where I would love for a doctor to like, be able to get a hold of this in a vial and you could mess around a little bit and try to figure out like, what's the right dose and the frequency to really balance the nausea with the with the impact you're getting? Yes, this
Anonymous Female Speaker 56:58
is why I'm saying five years from now. That's what's gonna be going on. Right? Don't you think they're just gonna be like, here's a vial is valid, but you need to help with this. And like if, like I want her to keep taking it, but I don't want her to shrink.
Scott Benner 57:10
Yeah, I'm gonna have like a Mad Max vest with it on I think in about five years and he's just gonna put in tiny little bits of it when I need it. Well, if that's a reference, anybody gets her not. By the way, we go via an inflammation reduction back to our chat GPU overlords. We go V is a brand name for someone we know what that is GLP receptor agonist blah, blah, blah, mechanisms of inflammation reduction, modulation of immune response semaglutide and other GLP receptor agonists can modulate the immune system by influencing the activity of various immune cells, including macrophages and T cells, T cells sounds like a cancer thing, doesn't it? This modulation can I get to find out what a T cell is. Modulation can lead to a reduction in pro inflammatory cytokines and an increase in anti inflammatory cytokines. Reduction of oxidative stress oxidative stress GLP receptor agonist has been shown to reduce oxidative stress which is closely linked to inflammation. By dis creasing oxidative stress these medications can mitigate the inflammatory response. Chronic inflammation in the brain known as neuro inflammation is associated with various neurodegenerative and psychiatric disorders. semaglutide has demonstrated the ability to reduce neuro inflammation in animal models suggesting potential benefits for conditions like Alzheimer's disease and bipolar disorder, and metabolic inflammation. obesity, type two diabetes are often accompanied by chronic low grade inflammation semaglutide helps reduce this metabolic inflammation by promoting weight loss, improving insulin sensitivity and reducing the levels of inflammatory markers such as C reactive protein. I'll be God Damn,
Anonymous Female Speaker 58:46
look at what it did
Scott Benner 58:48
health care about that? Yeah, yeah. You know who you're gonna hear talking about this except for you on this podcast? No one No one's gonna talk about this. I took I took it pretty hard in the last week for having a guy on who had type one for eight years. He's diagnosed by his doctor type one eight years. 50 years old, diagnosed 58 years old now hasn't taken insulin in like two years because he's on Manjaro and people come on he doesn't have type one diabetes. I'm like he's got he's got this testing. He does. He's got a he's got one of the markers for type one like, and people like well, it's moody. It's it's Lada. It's on like, I don't give a what you call it. The guy was using all the insulin, and now he's not using any of it. And whether this lasts for a week, a month or five years, what do you care? Big picture baby, like Jesus Christ, step back and see the big picture. I got doctors coming at me online. This is very, gotta be careful. You tell them people with type one they don't need and so I said I can say that. I said this is the guy story. Go listen to it. And I think we even said in there it's not a cure. He definitely thinks it's possible that he's gonna have to go back on it. sauna at some point, like, you know, like, maybe he is just in the middle of a very long honeymoon, we all appreciate that. But for the love of God, he took it. He takes an injection once a week, and he stopped taking insulin. And the little girl that you referenced from the other episode, she was using 70 units of insulin a day, and now uses four units of basil only, there's not currently bolusing for her meals. Like what the hell like I love how people's brains work. They're like, don't say that. I'm like, don't say that. We should be screaming this at everybody. Yeah, we shouldn't be telling people, Hey, this lady's kid was in can trouble. And now she's not. And someone go find out what happened. You only mean like, so we can duplicate it for people. I didn't mean to curse that
Anonymous Female Speaker 1:00:50
much. And that's what it is. It's not a cure. No, but it's definitely going to revolutionize how we take care of these things. It's
Scott Benner 1:00:56
doing like, glisten. It's doing something for your daughter right now. And it's an incredibly positive, you were talking about a kid who binge eating, who's trying to kill herself. He's wandered into a lake to stare. You don't Amy and like, like having moments that her parents are identifying as, like, going dark. You try living through that? Seriously, like as her or as you and your husband or your poor kids. The other two, who I assumed lived for a couple years in a corner covering their head. Like, you know what I mean? Like, like, there's a lot going on, right? I'm not wrong, right? Yeah. Like, and she gets this and look at all it's doing for and I'm gonna bet you're gonna tell me you've explained this all backwards and forwards to your insurance company. And they told you to shut up and go paying cash. Is that right?
Anonymous Female Speaker 1:01:44
Yes, they did. Yeah, that's what they said. They said, but we don't pay for weight loss drugs. I was like, I don't care. It's not a weight loss drug.
Scott Benner 1:01:52
Does the doctor believe that? This is what's happened? Yes,
Anonymous Female Speaker 1:01:55
our doctors are fabulous. And both our psychiatrist and endo wrote letters, saying as much I'm
Scott Benner 1:02:02
tired of people not being able to think like I get the insurance company. They're just trying to get out of spending the money. That's
Anonymous Female Speaker 1:02:07
the thing I'm gonna do. Do you know how much you insurance companies spent on hospital stays for this child in the last two years? Oh, thank you more than this medication cost? Yeah,
Scott Benner 1:02:15
that one that is probably your only pathway to this. Hey, let me ask you one simple question. Who are you getting the the insurance through? Is it your or your husband's company? Right now? It's
Anonymous Female Speaker 1:02:27
mine. Okay.
Scott Benner 1:02:28
Is it a big company? Is it possible, they're a cash payer? It is not a big company. Now, I'm sorry, because a cash paying company could override what has been set up in the plan.
Anonymous Female Speaker 1:02:40
You know, that's a good point, both my husband and I work for small businesses, he owns a small business and I work for a small business. So yeah,
Scott Benner 1:02:47
his small business is probably making safe rooms, I would imagine, because he probably did that a few years ago, he's, he's like, we're gonna need a safe place to go at some point. So we did go into business for ourselves here, we'll build the first one in the house, it'd be the prototype, this is where the sales will go on. And then we'll do it for other people. People who live or work for really big companies, I try to go over this as much as I can a cash pay employer would mean that they're such a big company that they really just use the insurance company to facilitate the payments, they set up what's covered at the beginning of the year. And the insurance company really just does what they tell them, like, and so you can go to your company and be like, listen, put this on the on the formulary, please. And they can make that change if they want or they can check off an exception, they can literally just call your insurance carrier and go, Hey, listen, this lady is going to call you later today. This is their name, this is her kids thing, we're going to cover the week OB for her, and they'll go okay, and that's it because they're only doing what the company told them to do. In your situation, you're probably not in that situation. And the company is probably paying a one time VIG to the insurance company, and then they're done out there. So you got to find out if you're a cash pay or not. Does that make sense? It does.
Anonymous Female Speaker 1:04:02
It does. I could definitely find that.
Scott Benner 1:04:04
I mean, it's worth a look. And you know, because instead of like, you're, basically you're calling somebody who's been told these are the rules and you're saying don't follow the rules. And they're saying, Sorry, don't care, because your company either paid us for this, or is telling us to do this. Now, if your company is willing to like, go that extra mile for you than they might be now. What does that mean? Like in a cash pay situation? You're talking about another $24,000 a year maybe or more to cover your kids medication? A big company laughed at that amount of money and says yeah, sure, no problem. Right. Like a small company says I'm sorry, you're gonna bankrupt us. I can't do that for you. So you got to you gotta see who you are and that situation, personal experience. My wife's company when Arden was little paid for like a $10,000 extraction of teeth to happen in a a hospital setting because we couldn't find a dentist who was covered put comfortable putting Arden under while she was on insulin. Really? Yeah, they wanted to do it in the hospital. Yeah, yeah, our insurance was like, this is Dental. We're not paying for this. We were faced with a $10,000 bill. And I went to the company and said, Look, just cover this. And they were like, Yeah, sure, no problem. It was, it was over like an hour. You know what I mean? It was interesting. That's great. But again, a big company to whom, which I think $10,000 wasn't a problem. Yeah. Yeah. Nevertheless, it was a problem for us.
Anonymous Female Speaker 1:05:35
Yeah. Right. I mean, it makes me want to want to change my job path.
Scott Benner 1:05:41
Yeah, well, I mean, at least to accompany who will cover we go up for weight loss, because you're covered there. Yeah, on that. Also, what happened to her diabetes? How how's the insulin use? Did it go down at all?
Anonymous Female Speaker 1:05:52
I cannot believe we haven't talked about this yet. Of course, her agency is better, right? Of course, her agency, when we were really, really tightly managing it, we could get it down to like, 6.8. But when she was sick, it mostly hovered around 7.5. And then now it's 5.80.
Scott Benner 1:06:12
Good for you. Just you use less insulin in a day than she did before.
Anonymous Female Speaker 1:06:17
Oh, my gosh, yes.
Scott Benner 1:06:20
Did that happen immediately when you injected it? Or did it? Is it some of the it's also the weight loss, too?
Anonymous Female Speaker 1:06:27
I mean, definitely does. I'm sure weight loss has something to do with it, right? Obviously, when you lose weight, you're probably going to eat less, you're going to use less insulin. So there's definitely that piece of it. But there's this other piece where her body just seems to be receiving the insulin better. Yeah, you could just use it more efficiently.
Scott Benner 1:06:44
Does it really smash like mealtime spikes down to different animals?
Anonymous Female Speaker 1:06:49
To the point that she's on a T slim? We use Control IQ with our Dexcom. And she, in fact, we switched to the T slim to get control IQ because that was before the Omni pod to had their I don't know what they call it. Their version of the logarithm.
Scott Benner 1:07:09
Control like you? Oh, no, on the pods is on the pod five?
Anonymous Female Speaker 1:07:13
On the right. Yeah, it was before the new iPads came out. So we switched to the T slim to get the control IQ. And that did help us even though she was still very sick. So we're on the T slim with the control IQ and part of her mental health issue was the the burnout from the diabetes care. And even on the T slim, she just wasn't entering her food and what led us into her food. And you know, it was the whole thing. We couldn't even say, tell us what the blood sugar is, or check the blood sugar. And we took off all of our, you know, our phones used to receive her blood sugar too. We took all of that off, because we all just needed to take a step back and not be obsessed with her blood sugar. Yeah. Because that was causing a lot of tension. My husband and I both like to control things. And we wanted to control the diabetes all the time. And that was her big thing pushing against any type of control, right? Look at Oh, we'd all laid back. We have the control IQ going since probably October. So even in October, she'd lost a significant amount of weight. And she was eating a lot less. But she's still eating. You know, she's kind of just normally eating. We just like control like you take it we never dose for anything.
Scott Benner 1:08:23
How about that? I just watched Artemisa Pre-Bolus, like 45 minutes ago and her blood sugar went to like 116 jump right back down to 114. It's coming down steadily right now. And without a Pre-Bolus like and without a GLP she would have been more like 181 8190 and that situation? Yeah, it's really something like, yeah, good for you. Listen,
Anonymous Female Speaker 1:08:47
it's amazing. I
Scott Benner 1:08:48
can't thank you enough for doing this. This is fantastic. I really appreciate you sharing your story. And getting through all the hurdles that you got through. So you have the story to share. Because you could have given up at any moment in time, I wouldn't have blamed you. And instead you you fought through and you got a real answer. Do you feel accomplished? We're just happy it's over.
Anonymous Female Speaker 1:09:09
I mean, we still have things to deal with. But we are so happy that our daughter feels better and that she can be a functioning 14 year old. I mean, I know you're always proud of your kid, but you know what to watch a kid graduate from eighth grade who has gone through so much and I mean, couldn't even go to sixth grade. I homeschooled for a whole semester, because she couldn't even make it there. Yeah.
Scott Benner 1:09:35
It makes sure people really understand like, you had to pull her out of open windows, right?
Anonymous Female Speaker 1:09:40
Yeah, yeah. She was jumping out of well, you know, after a few of the windows, we had to nail every window in our house shut.
Scott Benner 1:09:47
Okay. Well, there that's a clear description. Okay, so
Anonymous Female Speaker 1:09:53
I couldn't take her in a car. Cars were very unsafe. My whole family and the five of us we didn't go in one car. For two years, because she couldn't be in a car with that many people. Yeah, it was tough. Yeah, it was tough. And now, you know, she's going to school and participating and doing homework and taking guitar lessons and got them
Scott Benner 1:10:16
good for her. All right. Now, this was wonderful of you, I really, I can't thank you enough for reaching out. I can't thank you enough for, you know, shouting out the podcast about where it was helpful and everything like that. But I'm really thrilled that because I took a lot, and I am taking a fair amount of crap for talking about GRPs. And, you know, not from forward thinking people, obviously, but from people who are, you know, anywhere on the spectrum from, gosh, like, you know, you're pushing the GLP agenda. I've heard that was lovely to, you can't say this. By the way, in case you wonder how I measure when I'm doing well, when somebody says, You can't say that, I think, Oh, I must be on to something. So it said a couple of times in my life, but this podcast people in the diabetes community, I'm making quotes, because just because you say you're in it doesn't mean you're in it, have told me that, you know, what I'm doing is wrong and hurtful for people. I disagree. So, I've been told you can't tell people how you manage your daughter's blood sugar, because that's dangerous. That turned out to be wrong. Yeah, I'm looking at. When I get done here, I'm looking at a post from a person in the private Facebook group and adult who had a significant low blood sugar incident at work, and came to the Podcast, the podcast, private Facebook group to share the story. It's a harrowing story. But what I learned from just skimming it with my eyes, is that this person had glucagon with them, they had a G voc hypo pen with them, that they would not have had had they not listened to the podcast. Wow. Yeah. And so to those people out there who say don't talk about this stuff, until it's 100%, you know, till the FDA says for 10 years, and it's okay, and blah, blah, like you're missing the point about how we get to these things. You know what I mean? People have to hear these stories, they have to go find out for themselves. I'm not telling anyone what to do. This isn't like, what is this kindergarten, I'm not in charge of people. You don't mean like, nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, you know, like, go take care of yourself. But where are you going to hear a story about a lady who struggled to help her kid for all these years that had all the problems your daughter had? And Bing, bang, boom, at the end? She's doing a lot better. And it's because of lithium and GLP. No one would have thought that, right? Yeah. And I'm, I'm over here banging this Gong about. I'm like, Hey, inflammation, inflammation, autoimmune. Right? Like, there's no just no one. Remember? Maybe no one does. Remember, back when I was writing the blog. There used to be this messaging out of some out of some researchers about type one diabetes, and the messaging was always, hey, I know you think the beta cells in your pancreas are dead, but they're not dead. They're just inflamed. And they're frozen. They can't move because they're so swollen. That was the like, blue collar way I had it explained to me like 15 years ago. What if there's something to that? Like, what if they were on to something but they didn't know how to impact it? Right? And so let's say that all the cells in your pancreas are just inflamed. And because of that, they can't function. And then you take the inflammation out and they start working better. Like is that's not crazy? Is it? Yeah, wow. So you know, because right now we say things like, her insulin sensitivity has gone down, or the insulin seems to work so much better now. Or blah, blah, blah, but what if what is really happening as information is leaving the pancreas and, like, I don't know, like, you don't want to ask me because I'm, I want to be clear. I'm a fucking idiot. Okay? Like, like, you don't, you don't want to ask me I barely and I mean this with all sincerity, barely scraped through high school. I know how to listen to people. And I know how to hold a lot ideas in my head and draw lines. And there are lines to be drawn here. So I'm going to help people tell their stories so other people can draw the lines and then I'll sit back later while everybody else takes credit for it and yeah, that'd be fine. Anyways, Fine,
Anonymous Female Speaker 1:14:32
let's just get it done.
Scott Benner 1:14:33
I don't care who gets as long as it happens as long as as long as they start covering it for your kid. So you don't go broke. Right? I mean, between the GLP and feeding that dog, Jesus Christ, I don't know how you people are existing. Go got that dog must eat like a cat a day or something like that is what I'm imagining. So anyway, you were
Anonymous Female Speaker 1:14:56
your body shaming my poor dog. Listen Alright, that's fine. He knows. Yeah.
Scott Benner 1:15:04
Listen, if he knows, send them my way. I apologize.
Anonymous Female Speaker 1:15:09
I thought I'd give them a GLP one. You're like, Listen,
Scott Benner 1:15:11
man, I can't help who you are. If I didn't know you and you could hear me. Anyway. Alright, thank you so much. Hold on, hold on one second for me. Yeah, thanks.
A huge thanks to Dexcom for supporting the podcast and for sponsoring this episode dexcom.com/juicebox Go get yourself a Dexcom g7 right now using my link. Mark is an incredible example of what so many experience living with diabetes, you show up for yourself and others every day, never letting diabetes to find you. And that is what the Medtronic champion community is all about. Each of us is strong, and together, we're even stronger. To hear more stories from the Medtronic champion community where to share your own story, visit Medtronic diabetes.com/juicebox The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com. 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 CDC es 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. I'm going on vacation and I'm bringing you all with me juicebox podcast.com, scroll down to the juice cruise banner, click on it and get all the details. A diabetes diagnosis comes with a lot of new terms and you're not going to understand most of them. That's why we made defining diabetes. Go to juicebox podcast.com up into the menu and click on defining diabetes to find the series that will tell you what all of those words mean. Short, fun and informative. That's the finding diabetes
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