#1833 Stale Doughnuts
Kathy shares her late-in-life Type 1 diabetes misdiagnosis , navigating Graves' disease and Thyroid Eye Disease , the mental toll of visible symptoms , and the vital importance of medical self-advocacy.
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Key Takeaways
- Adult-Onset Misdiagnosis is Common: Adults presenting with symptoms like rapid weight loss are frequently misdiagnosed with Type 2 diabetes, which can lead to life-threatening complications like DKA before the correct Type 1 diagnosis is made.
- Autoimmune Conditions Often Cluster: A Type 1 diagnosis can be accompanied by other autoimmune issues, such as Graves' disease and Thyroid Eye Disease, requiring you to actively monitor symptoms like racing heart rates and extreme fatigue.
- Hormones Must "Play Nice" Together: Insulin, cortisol, and thyroid hormones all interact. A disruption in one (like hyperthyroidism) can drastically alter your insulin needs and cardiovascular responses.
- Self-Advocacy in Hospitals is Critical: When undergoing surgery or hospital care, patients with Type 1 must vocalize their insulin needs, especially regarding suspended pumps and fasting, as institutional protocols are often inadequate for T1D management.
- The Mental Toll of Visible Symptoms: Managing public lows and dealing with visible physical changes (like proptosis from Thyroid Eye Disease) can cause severe self-consciousness, compounding the daily mental burden of chronic illness.
Resources Mentioned
Welcome & Introductions
Scott BennerHere we are back together again, friends, for another episode of the Juice Box podcast.
CathyHi. I'm Kathy. I have type one diabetes diagnosed at a later age, thyroid disease, specifically Graves' disease, and thyroid eye disease.
Scott BennerMy grand rounds series was designed by listeners to tell doctors what they need, and it also helps you to understand what to ask for. There's a mental wellness series that addresses the emotional side of diabetes and practical ways to stay balanced. And when we talk about GLP medications, well, we'll break down what they are, how they may help you, and if they fit into your diabetes management plan. What do these three things have in common? They're all available at juiceboxpodcast.com up in the menu.
Scott BennerI know it can be hard to find these things in a podcast app, so we've collected them all for you at juiceboxpodcast.com. While you're listening, please remember that nothing you hear on the juice box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan or becoming bold with insulin.
Scott BennerToday's podcast is sponsored by US Med, usmed.com/juicebox. You can get your diabetes supplies from the same place that we do, and I'm talking about Dexcom, Libre, Omnipod, Tandem, and so much more. Usmed.com/juicebox or call (888) 721-1514. Today's episode is also sponsored by Medtronic Diabetes, who is making life with diabetes easier with the MiniMed seven eighty g system and their new sensor options, which include the Instinct sensor made by Abbott.
Scott BennerWould you like to unleash the full potential of the MiniMed seven eighty g system? You can do that at my link, medtronicdiabetes.com/juicebox. The podcast is also sponsored today by the Eversense three sixty five. The Eversense three sixty five has exceptional accuracy over one year and is the most accurate CGM in the low range that you can get. Ever since cgm.com/juicebox.
A Misdiagnosed Adult-Onset Type 1
CathyHi. I'm Kathy. I have type one diabetes diagnosed at a later age. Thyroid disease, specifically Graves' disease, and thyroid eye disease. I guess I am identifying myself by my diagnosis, but lots of other fun, cool things too.
Scott BennerYou were diagnosed later in life. How old?
CathyI was diagnosed at about 50 years old.
Scott BennerHow old would you tell me how old you are now?
CathyI am 62 now.
Scott BennerOkay. So you've had it for a dozen years. What was the diagnosis like? Do you recall?
CathyOh, yeah. I sure do. I was the classic misdiagnosed type two. I had recently taken a new job and moved three states away, of course, so no family, no support in the area. Had all the classic things. I lost, like, 80 pounds in, I don't know, two or three months.
CathyJust all those things. And, of course, in moving a lot, seeing a bunch of different doctors, I didn't have any consistency there and on and off with insulin. And with changing jobs, my insurance changed as well. I kinda had a perfect storm in my diagnosis story that I thought I was type two taking metformin and didn't know about deductibles. The insurance I had previously was not an issue.
CathyI would, you know, go to the pharmacy, get insulin, everything's fine, but didn't realize I was being reimbursed for insulin. So I'd go in and spend, you know, at that time, $1,200 for a month's insulin supply.
Scott BennerOh.
CathySo I thought, well, I'll stop taking insulin for now. Just do the metformin and, you know, eat very low carb.
Scott BennerThat didn't seem problematic to you because you thought you had type two diabetes.
CathyRight. Right. And that that's doable and ended up in the emergency room, crawling to the emergency room in ICU in a state two states away. I was in ICU for a week. The doctor told me he was very sick, I had heart issues, and it was a pretty serious situation, but it wasn't even that I was diagnosed as type one at that point.
Scott BennerWell, we're gonna wait. Crawling to the ER didn't get you a diagnosis? Yeah. Oh my gosh. Really? Okay. Alright. So let me make sure I understand. Like, as you're moving away, your doctors are are getting kinda split up, you're just seeing people to see people. So there's no consistency.
Scott BennerYou get the wrong diagnosis. The 80 pound weight loss, I have to ask you, that didn't freak you out or did it? And you just like, how did you reconcile that in your mind when it was happening to you?
CathyI thought it was pretty cool.
Scott BennerKathy's like, what are you talking about?
CathyI'm just trying I I think that's pretty common thing that yeah. Look at me. You know, I'm wearing a size two and, you know, I know that's just just wrong. But
Scott BennerI'd like to say out loud probably, if your body is rapidly changing drastically, matter which direction it's going in, you should probably wonder why that's happening. That's for everybody, not just for you, Cathay. There should be a reasoning behind it that you understand. You're in the hospital, but not getting a diagnosis still.
CathyRight. Seeing a diabetic educator, and mine was slow coming. You know, I didn't immediately need lots of insulin or for a long time. You know, I could manage that. Finally, I went to my doctor and said, you know, hey.
CathyI'm doing everything. I'm doing low carb. I can't get a a one c under seven. You know? And he's he looked at me, he's like, has anybody ever tested for type one?
CathyLike, yeah. Okay. Right? So we did that.
Scott BennerHow long into the journey was where somebody finally asked it to test you?
CathyI think it was at least a couple years.
Scott BennerNo kidding. Okay.
CathyLike I said, I was slow onset using insulin on and off. It just came to a crisis. I kinda had a a perfect storm, came into a crisis, and, of course, I ended up in the hospital. And then I went started to ask questions then. But I I really didn't know. You know? I thought I was moving along fine and a lot of stressors in my life. You know? New job, moving out to a different state, not a lot of people around me that could see, you know, hey. What's what's going on with you, Kathy?
CathyYeah. You know?
Scott BennerYeah. People you didn't look different to people because you just met them.
Graves' Disease & Heart Concerns
Scott BennerWhat about your heart, Kathy? Like, you said they said heart problems at first. Did that actually end up being true?
CathyWell, actually, at in DKA in the hospital in Indiana, they did a stress test. I remember a couple of times, you know, there's nurses in the hallway, and I'm setting off the beepers in the machines. They did a stress test or a chemical stress test, and I failed that. Okay. So went to a heart hospital after I got out of ICU, and they did the not remembering the name right now, but when they stick a tube down your vein to check things
Scott BennerOh, terrible.
CathyPast that. They didn't they didn't see any blockages, and there was no ongoing issues there.
Scott BennerOh, they give you, like, a heart catheter?
CathyRight. That's it.
Scott BennerAnd then looked around, and they didn't see any. Okay. Good. So so that the heart that they saw in that moment, that was from the DKA, you think?
CathyI think so.
Scott BennerOkay. So it's not an ongoing issue?
CathyNo. It it hasn't. Well, moving up, I have, another my kind of song and dance right now is I have Graves' disease hyperthyroid. Mhmm. And that ended up in another emergency room visit.
Scott BennerHow far into your type one diabetes does the Graves come up? How far into your initial diagnosis? So when you first thought you had type two twelve years ago, how much longer was it after that until you got the Graves' diagnosis?
CathyTwo years.
Scott BennerTwo years. Okay. So right around the time you're getting the type one diagnosis, you're getting the Graves' as well.
CathyWhat about years ago. 2024.
Scott BennerOh, two years ago. I'm sorry. Okay.
CathyRight. Yes. Sorry. A little trouble hearing everything.
Scott BennerOh, I'm so sorry. I'll I'll, I'll yell.
CathyWon't be the last time somebody's gonna yell at me today. So that's
Scott BennerOh, I'm sorry. Why? What do you do for a living?
CathyOh, I just have some meetings today. I, work for the Chamber of Commerce area development type of things, lots of small town politics and and whatnot.
Scott BennerKathy's like, my whole day is people yelling at me. It's fine. Tell me about the graves. Go ahead.
CathyYeah. That came again in a movie, and I guess I need to stay put. The company I work for was sold, and so I decided to move back to my home state because, you know, couple years from retirement, I'll just take the paying the bills type of job and and get to retirement. All is good. But I was just really, the moving process, just really tired and stressed out and heart racing.
CathyThe heart rate, like, you know, over a 100 and blood pressure, you know, one ninety over something something. I don't remember at this point, but just always exhausted. I could barely walk across the room without needing to sit down. Know? And, of course, you go to the doctors for that, and they think, well, you're diabetic so that, you know, that's the answer for everything.
CathySo didn't really get in a read on that until with Graves, for me, lost a little bit of weight and couldn't eat. I literally would go days without eating, and I was on a pump at that point, so it wasn't you know, my my insulin would suspend all day because I literally wasn't eating or drinking anything. So ended up on the move halfway to my new place, ended up in the emergency room, DKA, mild DKA. Luckily, there was a resident there that was pretty persistent, and and I asked too, you know, what what's the deal with the heart rate? You know, why why is that so hard?
CathyAnd they did some testing with the antibiotic testing, figured out I had Graves' disease as well, and that was, what was causing the heart issues again.
Scott BennerAll those symptoms go away how quickly when you get medicated? Like, how long does it take for the medication to pull you back to a better place?
CathyI went to primary initially because, of course, you know, like everywhere, an endocrinologist can be kinda hard to get to. And, of course, I'm moving from one state to another, so out of that. But they prescribed beta blocker metoprolol
Scott BennerMhmm.
CathyRight away, and that helped tremendously.
Scott BennerOkay.
CathySo got to an endocrinologist and put on methimazole. And I would say within a couple months, I was in much better shape. The weakness and the fatigue lasted a while, but pretty quickly, I could I could function again.
Scott BennerOkay.
CathyAnd that's kind of where I ended up in. I live real close to research hospital for an hour and a half away, so got into clinical trial for another drug that's a treatment for or possible treatment for Grave is impossible treatment for thyroid eye disease as well and feeling better pretty quickly. My doctor is pretty conservative with adjustments to medication, but I did find out on that journey too that type one diabetes, the thyroid issues, and, at one point was concerned about cortisol as well that they need to play nice together. And it's kind of hard to manage all this that I went through a period when we're concerned about cortisol that I dropped my insulin use dramatically, and my heart rate would go down to, like, 80 over 40.
Scott BennerDo you speak to other people in my Facebook group who have similar issues to you? Because I I there's, like, a little group of them talking about, like, cortisol and Graves' and stuff like that. But have you found those people?
CathyI have found those people and talking back and forth and yes. I think it was a comment I saw on the Facebook page that somebody described it as bumper bowling. I can't think of the exact word, but you've got insulin hormone over here, cortisol hormone, and thyroid hormones that kinda gotta get that ball all the way down and bump off each other. I didn't realize until talking to people like that, and that's that's the huge value of that that it all kinda has to work together.
Thyroid Eye Disease & Double Vision
Scott BennerYeah. Thyroid eye disease, do you get that diagnosis at the same time as the Graves', or does that come more recently?
CathyNo. And that's that's really a word I wanna put out. That was the clinical trial I was in as well that
Scott BennerFigured that out.
CathyIn a blind study at first and was a nonresponder to that. Then I put an extension trial where it was open label that I knew I was taking the drug and not responding. In fact, the, with the thyroid eye disease, what they look at to judge is some clinical signs, eye redness, dry eyes, and actually, take a measurement of how much your eyes are, can't think of the medical term, but, bulging. Mhmm. Mine was pretty significant.
CathyA normal white woman average, that measurement's gonna be not over 20. Mine was 28 and 29, so it's fairly significant.
Scott BennerIs it called proptosis?
CathyThat's it. Exactly. Yes.
Scott BennerAnd so your measurement was greater, and I am interested, though. So you got into this study. How valuable has the study been for you?
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CathyAs far as taking the drug, it didn't didn't help, but it got me the right connections. The research hospital I go to, they're very into collaboration
Scott BennerMhmm.
CathyThat the endocrinologist is talking to the ophthalmologist, is talking to the surgeon. I ended up well, let me back up just a minute with a just try that steady drug, and then there's, TEPEZZA that they offered me to try. And I I had some concerns about that. I'm I'm not bashing the drug or anything. It's just for me, it didn't sound like it would be a good idea.
CathySo I ended up mid December getting bilateral orbital decompression surgery. It ended up being a ten hour surgery. Mhmm. There's a team of surgeons that will go through your sinus and another team that will remove the fat and move the muscles around your eye. Okay.
CathyIt was fairly intensive, but decided to go not with more drugs and backing up again too. It's a hard thing to diagnose. What they were having trouble with in the trial is that they wanted people that have been less than a year diagnosed with thyroid eye disease, and doctors didn't wreck don't recognize it. They you know, you go to your eye doctor and well, you have dry eyes.
Scott BennerMhmm.
CathySo You don't necessarily get the thyroid eye disease diagnosis. Just they'll say, oh, you have dry eyes. You have redness. Use drops, stuff like that.
Scott BennerSo we can go undiagnosed for quite some time.
CathyRight.
Scott BennerYeah. Do you think that happened to you?
CathyI, of course, get diabetic eye exams every year and went to that doctor first because my it was very red above my eyes and swollen. And they, of course, sit well, they said dry eyes, you know, you're fine. So there's there's no test that I'm aware of. It's just really clinical. And if you have Graves, I think it's forty percent.
CathyMaybe I'm just grabbing a number out of my my head, but a lot of people with Graves' is pretty directly related to that.
Scott BennerI see. Do you have any of the serious side effects of it? Do you have damage or vision loss, anything like that?
CathyWell, right now, after surgery, I have double vision pretty badly and maybe looking at it in a few months, once kind of the healing has died down, looking at some muscle surgery, and that's not as intense at all, but to be able to move around my eyes. It's fairly rare with thyroid eye disease, vision loss. In fact, my vision is twenty twenty, twenty thirty. But the danger is is it starts messing with your optic nerve, which I'm good with so far, knock on wood, with that. But with the dry eye and physically not being able to shut your eyelid, you can get really bad dry eyes.
CathyAnd I have some signs of that that you know, some spotting on my eyes that they can see the dry eyes, and that's the danger with, vision loss.
Scott BennerOkay.
CathyIt can literally burn your cornea because you can't close your eyes.
Scott BennerWhat do you do for that? Do you, like, physically have to remember I'm I'm gonna say something silly, but do you do it with your hands, or do you, like, put drops in, or how do you manage that?
Scott BennerI have always disliked ordering diabetes supplies. I'm guessing you have as well. It hasn't been a problem for us for the last few years though because we began using US Med. You can too. Usmed.com/juicebox or call (888) 721-1514 to get your free benefits check. US Med has served over one million people living with diabetes since 1996. They carry everything you need from CGMs to insulin pumps and diabetes testing supplies and more. I'm talking about all the good ones, all your favorites.
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CathyI use drops. I use gels at night, and there are people that I don't have to do it, but will literally tape their eyes shut at night. Next month, I'm back to an ophthalmologist looking at maybe plugs in my tear ducts so the the tears stay on my eyes.
The Mental Toll & Stale Donuts
Scott BennerOkay. My gosh. Kathy, are you alone? Do you live by yourself?
CathyYeah. Yeah. I am.
Scott BennerIs this I mean, I I'm sorry to ask, but is this all very frightening? How do you find the kinda mental side of your process to be?
CathyYou know what was hard about thyroid eye disease? I had very significant the bulging on my eyes didn't bother me that much. It didn't. But above my eyes, on that eyelid were very pronounced. So like I said, you know, I have a very public job, and I'm out and out and about all day.
CathyYou know, we have in in the boardroom, there's there's mirror a mirrored section on the boardroom, you know, having a great meeting and turn around and and look at my eyes that are look swollen and, you know, something's wrong with something's wrong with her. And it's it it does take a toll, and I find that too. I just had a you know, with a type one, I I wear a pump, but well, I've had a few low situations recently where, you know, I'm sitting in the grocery store eating stale doughnuts that I haven't paid for, and I'm not concerned so much that I'm having a low it's like, are people watching me and and thinking, you know, what's what's wrong with her?
Scott BennerYeah.
CathyYou know, that's that's the mental toll for me that
Scott BennerFeeling self conscious is what gets you.
CathyYeah.
Scott BennerYeah.
CathyYeah. And, of course, when, you know, into a low, your your brain's not functioning, and I've literally stood in grocery lines look deciding which flavor of juice, you know, I'd like and and dropping below 50 and yeah.
Scott BennerYeah. Well, I have to tell you, I'm definitely calling your episode stale doughnuts. A million percent.
CathyI'm glad I could help you with that. I I
Scott BennerYou were worried?
CathyI was worried what it was gonna be. Yeah.
Scott BennerThere are times I get done, and I leave a voice note for myself and for Rob at the end, and I just I'm just babbling into the note. I'm like, I don't know what to call this. This nothing came up during this one. I don't know what to say. But no.
Scott BennerThis if only you would have said you were sitting on the floor eating stale donuts, I would have called it stale floor donuts. But we're just gonna go with stale donuts. And then I just wanted to ask because, you know, you moved a few times and you did a really good job explaining how that feels. You were very descriptive in just a couple of words, like being in a meeting, doing your job, knowing you're doing a great job, and then looking over, seeing yourself, and then having that moment where you think, oh, gosh. Is everyone looking at me and thinking what's wrong with her?
Scott BennerAnd even at your I mean, you're 62, and that doesn't go away, I guess. You know? Mhmm. Do you talk to anybody about it? Your friends or people you can chat with?
Scott BennerDo you see a therapist? Anything like that?
CathyNo. I haven't. I don't know. With this whole process, I'm I'm kind of always hoping, well, this will resolve. This thing will get better.
CathyYou know what I mean? That that next doctor appointment, that's that's gonna be the answer, and this will get better. And I don't with that clinical drop trial when they were offering me different drugs when the first didn't work, You know, that was part of my decision making process too that the TEPEZZA is is an eight month process.
Scott BennerMhmm.
CathyThat you know, surgery choice was pretty pretty radical, but I I couldn't hope for eight more months that this was gonna resolve because it's it's it's pretty traumatic. I mean, it's not just that you have a medical problem. It's yeah.
Scott BennerKeep keep talking. It's not just they have a medical problem. It's what?
CathyI mean, it it becomes your whole being. That's you know, I like to push things push things aside. You know? Love my insulin pump. I rarely have to think about it.
CathyYou know? I'm I'm not good at confronting it. I just assume it not be there. And just my dad used to, tease me that I was just like my mom, and I'm fine.
Scott BennerOh, you just be like, everything's fine. Everything's fine. Everything and
CathyI'm fine. I'm fine. Don't don't worry about me.
Scott BennerDo you think it's that you don't want people to worry about you, or do you think that you're trying to just ignore things and hope they they that you get back to some semblance of normalcy that you're looking for?
CathyI would say I don't want people to work worry about me, but I also I just wanna live a normal life. I think about times where I do a lot of event planning in my work, and I love live music, go out to concerts. I remember a situation where I was at a concert and kinda scouting out all the food trucks, you know, where what do I gotta time my insulin and and get food and get back? And and I started to drop low, and I'm sitting in the middle of a crowd. Just my my pump's alarming, and I'm like, why?
CathyYeah. Why can't I just be normal? You know? Go about the day, go to the food truck just and not worry about it.
Scott BennerDo you feel like why me or just
CathyI don't know if I feel so much why me, but I wanna live my life the way I wanna live my life, and it doesn't always doesn't always jive.
Scott BennerYeah. I didn't think we were gonna have such a deep conversation at 8AM. It's making me upset. I'm getting I'm getting sad. I
Cathyknow. People are gonna be in my office in about forty five minutes, and if I'm in tears
Scott BennerYeah. She'd be like, why is she crying? She's like, she was on a podcast. I don't know. She said something about the guy.
Scott BennerHe asked about her feelings. I mean, I'm trying to think through your life and, you know, the best I can from this position. And when you have situations like that that are not resolvable or something that like like you said, like the pump. Like, you know, hey. I have type one diabetes, but this pump thing kinda takes care of it most of the times.
Scott BennerLike, you know, I can kinda not think about that as much. But the Graves' thing is is tough, and I don't know that people, you know, would understand that if you if you didn't spend the time right now talking about it. So I really appreciate it.
CathyGraves' has kinda become my my standout. When I see other people posting about things, I'm like, get your thyroid checked to get your I looked back at my medical records, and I've had an endocrinologist for, you know, how many years and how many times I've actually had a thyroid checked. Zip.
Scott BennerYeah. I feel like that's my secondary cause with the podcast. Like, I I try to ask everybody when they have symptoms like that. Like, have you had your thyroid checked? You know?
Scott BennerAnd then everyone always says, oh, yeah. It was fine. I say, well, you know, can you get the TSH number? Because it you know, there's a possibility that the doctor saw a number that they think of as in range, but, you know, might be indicative of of your thyroid having an issue no matter whether it's in range or not. You give that whole explanation.
Scott BennerI feel like I've said it a million times, but I feel like sometimes when I say it to people who listen are probably like, oh my god. He's talking about their thyroid again. But it just gets missed for so many people, and it has really serious impacts on your life. And, you know, one little pill once a day. You know what I mean?
Scott BennerAnd it just I just wish people knew about it more and more. So I appreciate you talking about it bringing it up.
Navigating Surgery & Hospital Care
Scott BennerHow did how's the diabetes going? Like, so once you got the diagnosis and, you know, they told you you had type one, was it injections? Like, did they give you a pens?
Scott BennerDid you get on a pump right away? What was that process like?
CathyI was no. Not not a pump for years later. Started out MDI and had a CGM. That was amazing to me even to have a CGM because I my blood sugar was just all over the place. So I was didn't have any awareness of that and how often I was going low because I was just randomly taking insulin.
CathyYou know? Oh.
Scott BennerWhat was random about it? Why did you not have a plan?
CathyI think the doctor didn't have a plan. Started out sliding scale and, of course, you know, they're thinking I was type two, so maybe the insulin wasn't a wasn't a big deal. There didn't need to be a plan to just take a little when you're eating, you know, nothing about pre bolusing, you know, up and down with that. Then went to ended up with a a much better diabetic educator, so got on board once I got the type one diagnosis. Went to a pump three years ago, so it hasn't been terribly long.
Scott BennerOkay.
CathyBut my doctors push technology. She had a rep in the office there, so it was pretty easy. And, she was she was all about Medtronic, So that's what we went with.
Scott BennerAre you on the seven eighty g?
CathyYes.
Scott BennerYou are. And How do you like that?
CathyI like it a lot. Recently did the update to get the instinct sensors. Those are being shipped. So the switching over to that, there was, when I had the eye surgery, my the anesthesiologist, I talked to him about it. I'm like, well, I've got a pump on, and he's like, no big deal.
CathyAnd I looked at the records afterwards, and it was like a perfect line. So that did really well for me.
Scott BennerHow long was the surgery?
CathyTen hours.
Scott BennerTen you were in a ten hour surgery. Seven eighty g kept you stable the entire time in there.
CathyYes. I had one slight low, but otherwise, it was, one thirty four the entire time.
Scott BennerA 134 the entire time at ten hour surgery. What was the slight low? What did it go down to?
CathyThere was a bleep, and I'm kind of wondering it's a known thing with the seven eighty g with Tylenol.
Scott BennerOkay.
CathyIf something but it was, you know, it it was dealt with. I'm not sure. It was kinda mid surgery why it went low. But the anesthesiologist, was very comfortable with. He seemed very knowledgeable of my history.
CathyAnd
Scott BennerWell, that's awesome.
CathySo yeah. But I did figure out after surgery, I see a lot of when I'm kinda browsing the the Facebook, people talk about, you know, being able to use their pump during surgery and, you know, what that looks like and how to convince people. My message to folks is that take a look at what your aftercare looks like. I couldn't after surgery, I mean, my eyes were just very swollen. I couldn't even see a pump.
CathyMhmm. And the ENT surgeon was kinda imagining the aftercare rather than endocrinology to my awareness. You know, I haven't dig deep into it. Who knows what goes on behind the scenes? But he was like, well, you can you know, it was 07:00 on a Friday night when I got out of surgery, and they're gonna send me to the hotel.
CathyI'm like, no. That's not safe. So even even in that situation, I'm comfortable advocating for myself that we're we're not doing this. Yeah. But, yeah, I had a kind of a weird situation with that surgery.
CathyMy support person got COVID, so switched it up fast so that wasn't somebody that was really familiar with how to how to manage that. But, yeah, in hospital situations before, they're very diligent about, you know, not leaving until we you could show us, you know, how to use that pump.
Scott BennerRight. Right.
CathyBut that
Scott BennerKathy, a second. You had a support person set up for after the surgery who understood your pump and everything because you just had eye surgery, and then that person got COVID?
CathyCorrect.
Scott BennerOh my gosh. Did you come on. That had to that had to kick you in. Right? Were you like, come on.
Scott BennerReally?
CathyOh, absolutely.
Scott BennerI'm like No kidding.
CathyIt was my sister, and she called, and she was so apologetic. And I'm like, it's okay. The deal is is like I said, it was a research hospital, so those surgeons were, like, top of the top. You know? You don't wanna lose that appointment unless absolutely necessary.
CathyI'd never get back in.
Scott BennerYeah.
CathyI took it. But yeah. That's crazy. My fault or partially responsible not asking more questions about what aftercare was gonna look like.
Scott BennerYeah. I understand. Hey. You said you're getting the Instinct sensor. What sensor were you using previously?
Scott BennerThe one that has to recharge?
CathyYes.
Scott BennerOh, and so you're making the leap to the new more modern one with your Medtronic. Are you excited about that?
CathyI am. Because I used to, I used the Libre or CGM the first time, and I really like that. I like that you know, I'm always on the go, like, to travel. Mhmm. Like to be able to just pop it on rather than having to replace a transmitter, charge it up for two hours.
CathyAnd, yeah, I'm very excited about that. Hearing good things.
Scott BennerGood. Yeah. No. I am I am as well. I'm I'm interested to know, how it's going.
Scott BennerSpeaking of sensors, I think Arden's laying on hers right now because I'm seeing what looks like a, a compression low. People just asked me the other day if she's gonna try the fifteen day sensor. And I said, oh, she's an adult. Like, I don't even know if she knows it exists. I said, hey.
Scott BennerDexcom just went to a fifteen day sensor. Do you wanna try it? And she's, like, sitting in bed doing her homework. We just gotten done talking about, like, possibilities for grad school. You know what I mean?
Scott BennerAnd she goes, I don't know, dad. What do you think?
CathyIt's dramatic to have to switch. I started on on Omni
Scott BennerMhmm.
CathyAnd had a lot of problems with the adhesives.
Scott BennerIt wasn't good for you. Was it not sticking or sticking too much for you, or did you get a rash from it?
CathyIt was terrible terrible rashes and tunneling and yeah.
Scott BennerOkay. Just didn't work right for you?
CathyRight. Yeah. Fair enough. No. I I didn't have any problem with accuracy or anything like that.
CathyIt was just the adhesive didn't work for me. And my doctor did say something about as I'm getting older, Medtronic is kind of easier to get through Medicare.
Scott BennerSo Medicare likes Medtronic?
CathyI think so. That's what she said anyway.
Scott BennerWell, listen. Whatever whatever's free and whatever works. That sounds about right to me. What's your management like now today? Like, do you I mean, if you just only had a pump for a couple of years and you're you know, you pretty I mean, they brought you on pretty slow.
Scott BennerYou said you started sliding scale even though it was ten years ago. So, I mean, how do you describe your management now? Where does your a one c sit? Do your successes look like what you're, you know, what you're working towards? Does the Graves interfere?
CathyMy last a one c was 6.5.
Scott BennerGood for you.
CathyAnd I'm I'm comfortable with that. I because with the with the med tri, I can get the target down to a 100, and that's what I have it set at. But I I, yeah, I feel pretty comfortable with how things are going. It seems like when I go off track, I go off track hard, and it takes it a while to come back. And I'm not but I figured out every once in a while, I do need to calibrate and put in a blood glucose reading, or it will suspend too long.
CathyWhen I did the update for instinct, it was suspending too long and causing a problem there. So, you know, of course, bump high and but little things like that to figure out. And with the stale donuts, I figured out that's Tylenol that I was taking for after the surgery. And that's that's a known issue with that, but I was going severely low. In fact, I was at my endocrinologist office getting labs, and they're real good about that.
CathyBut and waiting for that, my blood glucose started dropping, so I'm eating jelly beans that I could find out of my bag at my endocrinologist office. And, they called me at 10:00 that night. I had a blood glucose of 34 sitting at the endocrinologist.
Scott BennerWait. Are you are you telling me that I wanna make sure I understand. Like, acetaminophen messes up the sensor, and so you were low and didn't know it. Is that the context?
CathyNo. With the it's it reads too high, so it delivers too much insulin is my understanding.
Scott BennerOh, so yeah. Then the okay. So the the sensor gets messed up by the acetaminophen. It gave you a high blood sugar. You were getting insulin for it, but you didn't need the insulin.
CathyRight.
Scott BennerMade you low. Okay. Alright. Yeah. I I felt like I was that's what you're saying, but I wanted to make sure that that's what we were getting at.
Aging with Type 1 Diabetes
Scott BennerHow do you think about, like, the rest of your life with diabetes? Do you spend a lot of time wondering how you're gonna manage as you get older? Are you making plans for it?
CathyYes. I do. And I I guess I'm not even sure how to begin to plan for that because my mom is 92 years old. Bless her heart.
Scott BennerOh my gosh.
CathyYeah. But she's in memory care, so I, you know, I hear things walking by the nurses and the medical assistants and and that type of thing. You know, comments like, well, I haven't given their noon insulin yet and saw somebody being called in to change a sensor. I'm assuming it was a sensor. I'm like, I don't know.
CathyI don't know how you change those protocols because, you know, I need that pre bolus.
Scott BennerYeah.
CathyOr if you don't feed me and I'm just sitting there, my insulin is being suspended that you know, that's a a bad problem for me too.
Scott BennerI have to tell you, Kathy, I find myself when I'm talking to older people who are thinking about this, what strikes me the most is that at the moment, they're trying to plan for the future. And they are people who pre bolus for their meals and take themselves very seriously, and they're really on top of their health. And they're trying to imagine how to do it out into the future. And all they're hearing, you know, from, you know, stories and and whatnot is that, like, you're gonna get into a home one day, and that's all gonna go out the window. And when I talk to people who who work in those facilities, they talk about it differently.
Scott BennerThey talk about it like, well, they're older now. They're not gonna live much longer. It's not that big of a deal if their a one c is seven. Like, you you realize that their focus and your focus are not the same thing. And then that realization that comes that you'll get older and you probably won't you won't be able to fight back or you might be in a position where you can't argue or stick up for yourself or advocate.
Scott BennerAnd even if you could, they wouldn't have the the infrastructure in place to handle it for you. Like, it's such a I find these conversations to be very, I don't know, sullen.
CathyI come from a very loving family. I have supportive friends, but yeah, that I mean, that is in my thought process that I I live alone, that who's who's gonna advocate for me because even to back up a little bit when I had that surgery, very fine hospital. And I was, you know, at 07:00 on a Friday night, and I just got out of ten hours of surgery. My eyes are practically swollen shut, and I was talking to the medical assistant. I'm like, I'm I'm not comfortable just Yeah.
CathyBeing kicked out here. I don't I don't feel like that's safe, she said. And I I'm not gonna name names here. And she said, well, you could go to the emergency room and see if you can be embedded that way.
Scott BennerThat's terrible. Yeah. Yeah.
CathySo the my support person had had walked away. I don't know. Bathroom break or something. And when they came back, all of a sudden, was going to the hospital. She he's like, what did you do?
CathyI've learned how to be an advocate for myself even even in this situation that and they said, well, we'll we'll check your blood sugar. And I look back at records overnight there. It was, like, one test in the morning before I left, and I'm like, no. Really. You know, I haven't I haven't eaten in at least twelve hours.
Scott BennerRight.
CathyIn twenty probably closer to 20, and I I can be in just as much trouble when I don't have insulin going in because the pump is suspending as I need to be able to manage that, and they didn't get that. And that's my concern between type one and two. I'm not I understand the issues with type two. I was misdiagnosed that way for a long time, but I need people to understand that I have no insulin going in, and I can be in just as much trouble with nothing as
Scott BennerMhmm. That's that's too much. Well, isn't that really the point, though, is that institutionally, the understanding is low. I mean, look. You got done with that surgery, and they were like, well, we can't help you.
Scott BennerYou gotta get out of here. And so even if you would've went to a hospital, who knows how good of a job they would've done for you? And then thinking about long term care as as an elder person, you're gonna be lucky to even be in a situation that good with as far as people's understanding
CathyRight.
Scott BennerAnd and desire to be, you know, desire to to be proactive in a way that lends to health when they're looking at you and your you know, the actuarial table says you're not gonna be here for much longer. So they're not thinking about you the same way anymore. It's like, you know, type one diabetes is like a lifetime of, like, I gotta take a good care of this because I wanna live and I wanna be healthy. What happens when you get to the end and there is no there are just not that many years left? You know?
Scott BennerLike, I don't I'm I'm so sorry. I don't wanna be a bummer, but, like, it doesn't get talked about enough. And I wonder when I'm talking to people who are in the service side of that industry, you know, and and it really is it really is a business taking care of older people. You think about how they think about it, and then you think about how you, the person, thinks about themselves, and that you still have the same desire at 70 and 75 and 80 about your type one diabetes that you had when you were, you know, 50 and 60 and some people for their whole lives. Like, how are you supposed to just give that away and say, oh, yeah.
Scott BennerI I guess I'm probably not gonna live much longer, so this is okay if my a one c is seven or if I don't get my insulin right away? Like, how do you make yourself right with the fact that that's how the system looks at you? And I I don't I really don't know the answer to that at all.
CathyThat's a good point that I hadn't kind of thought about it that way. You know? I kinda take it from my perspective. But, yeah, it is a it is a business, and I I do see that. Yeah.
CathyI feel like my mom is in a very good place. But yeah.
Scott BennerThey're not gonna you're not getting the round the clock attention. I mean, look at yourself as an adult now. Right? You've been taking care of your diabetes for a decade. Think about all the effort and time you put into it.
Scott BennerLike, how could they possibly do that for everybody in the building? Like, you could barely get your doctor to understand your diabetes. You're gonna get you know, every six hours, a new person, you know, streams through your room to take care of you. They're all gonna understand it like that, and you're gonna be older and maybe not in the same I don't know. Maybe you're not gonna be in the same situation where you can actually be directive about it at that point and tell them what to do.
Scott BennerI think in the end, it's just an incredibly unfair fact of life if you have type one and you live a long time. Like, it just sucks, and I don't know if there's much you're gonna be able to do about it. Maybe the automated systems by then will be so much so that, you know, it'll be like a slap it on pump, they'll be comfortable doing it because they won't have to understand how it, you know, quote, unquote, understand how it works because it's just gonna do the thing. You you know, maybe maybe that's maybe that'll end up being the key for older people. It would be nice because I think if you're waiting for the the staff or the institution to get the desire to take care of people on that level, that's never gonna happen.
Scott BennerYou know, they couldn't keep my mom free of a UTI. They're gonna take care of diabetes type one. You know what mean? And do a great job of it. I I don't see it happening.
Scott BennerBut, yeah, maybe the maybe the automation is the answer.
CathyMhmm.
Scott BennerYeah. I'm sorry. Did I completely ruin your day? Kathy's like, it's nine in the morning. Will you calm down?
CathyNo. I'm I'm pretty resilient type of person. I I I go with the flow.
Scott BennerWell, that's obvious.
CathyI just wanna live a full life.
Scott BennerYeah. It's awesome. And you're doing I mean, listen. From what I'm hearing from you, you are putting a ton of effort and time and focus into your health. I wish more people put this kind of effort into themselves.
Scott BennerYou were really trying, it sounds to me.
CathyMhmm.
Scott BennerYeah. You feel like you're doing everything you can?
CathyYou know, sometimes I I feel like I need to let it go too. Mhmm. Let those automatic like, you know, like we talk they let those automatic systems roll. And I'm I get all excited about things, and we'll do 20 things at once, and then we're gonna fix this. We're gonna fix that.
CathyYou know, kinda like New Year's resolutions that, oh, we'll do this all at once. And then three months down the line, it was like, I'm tired of doctors. Cancel that appointment. We're not going there. We're not doing that.
Scott BennerYeah. You did say something earlier that I didn't dig into. You said something about, like, when it goes off the rails, it really goes. Does that mean, like, when you lose your focus on care, you let it go for a while until you decide to pick it back up again, or did you mean something different?
CathyI don't feel like burnout is an issue for me, but in, like I said, very active, you know, meetings all day long out in the public that I won't take the I've got a sensor going bad or, you know, a fusion set needs changed, then it's have a terrible problem if my infusion set. I've got a bad site and, you know, here I'm up to 400 and don't take the time to say, you know, hey. I need to I need to take care of myself, I think. Maybe it even goes back to that I don't don't want other people to see this.
Scott BennerYeah. Do you think I've actually just had more conversations with people recently where, you know, they were trying to tell me what was it? Like, Omnipod five has been such a big deal for them. And I'm, like, picking through all the reasons, I think. And they're like, no.
Scott BennerNo. It's just it's the phone. And I'm like, what? And they said, you know, I can pull my phone out and give myself insulin without anybody knowing. And I said, oh, were you not giving yourself insulin when you needed to because you didn't wanna pull out a controller?
Scott BennerAnd they were like, yeah. Absolutely. So that's a problem for some people. Yeah. Yeah.
Scott BennerJust not wanting people to see.
CathyI kinda I had a situation where, you know, during COVID, worked in an office where we had cubicles and plexiglass up over everybody, and I think I was just diagnosed formally with type one and and well, it would have been a little after. But, you know, if you have the conversation with everybody, if you hear the alarm going off, just, you know, I'm probably okay. Just don't worry about it. But that was a time where I was having a lot of alarms. So so I'm sitting in a plexiglass cubicle, and my alarm's going off, and nobody responded at all.
CathyThat was a poignant moment for me. It's like, okay. Maybe we need to find a middle ground here that maybe sometime, you know, I need some help, and it's a
Scott BennerYeah. Also, it would kinda tell you, like, nobody's really looking. Like, that's sort of that part's in your head. Like, know, if all that beeping is going and no one's coming, you're just like, oh, I guess nobody gives a crap. You know?
Scott BennerLike, I nobody's really paying attention to all this maybe. Whatever I I'm gonna assume that the thing that my brain's missing where I don't really seem to care what other people know about me, I'm gonna tell you in about a month, there's gonna be an episode of the podcast out where I have a doctor on who did, like, an embolization surgery on me for, like, internal hemorrhoids, and I had, like, this crazy bleeding and everything.
CathyYeah. I remember reading about that.
Scott BennerWhile I'm on the the episode recording with the doctor, it actually occurred to me halfway through. I'm like, what is wrong with me that I don't mind talking about this? There should be a mechanism in my brain that stops me from saying this out loud. Right? I wonder if in my regular life I actually from having all these conversations and from having a daughter with type one, I often wonder if I had diabetes, if especially type one, would I walk the walk or would this all just be academic and it would go out the window?
Scott BennerLike, do you know what I mean? Like, I wonder if I wouldn't be in the same exact situation as that person I was talking to. It's like, well, I didn't wanna pull out that controller and let people know I needed insulin. Like, I wonder if that would happen to me. Or, you know, Arden had a bunch of stuff at college yesterday.
Scott BennerShe had to go to a bunch of kinda lectures and stuff, about her you know, what she wants to do in grad school. So she was at these events and people were talking. And you know how they always, you know, say, like, everything happens on the worst day. Right? So her GLP medication kinda waned in the last day or so, and she hasn't injected it again yet.
Scott BennerSo her settings that work great for while the GLP's running were certainly starting not to work. So they're starting not to work. She's real busy all day, probably eating at, like, buffet tables at these these events and everything. And I must have and I haven't done this in a long time. I must have texted her three times yesterday.
Scott BennerArden, you've really simple, but, like, hey. The GLP is gone. You need to, like, put in more manual insulin today. Hey, Arden. Please bolus here.
Scott BennerArden, would you put a temp basal in for an hour? Like, blah blah blah. Like and I haven't talked to her about, that in a long time. And so she comes home last night. We're sitting together.
Scott BennerActually, we were sitting with my phone looking at old videos of, like, when she was a baby. It was a really nice hour. I just turned to her and I was like, why did you not bolus yesterday when I asked you to? And she goes, I was busy. And I was like and it wasn't like I'm ignoring it or I don't care.
Scott BennerShe's just like there was a lot going on. And I I wish I could dig more into that with her, but because of you know, it's a father son relationship, I can't. You know? There's only so far I can push. And so I but it was interesting to hear her her perspective.
Scott BennerAnd then I kinda take her perspective back, I blend it in with other conversations about having other people. I basically try to figure out what's going on with Arden through talking to all you guys. I don't know if that's obvious yet or not, but that's my path. Anyway and I wonder if I had type one diabetes, would I be as bold as I say when I'm speaking, you know, without actually having to deal with it? I I don't know.
CathyI totally get that. And I grew up in a family, you know, we we don't talk about that. You know, I'm I'm fine. We don't talk about that. And even yeah.
Scott BennerThe stuff we talk about here, I think, would shock people. And my wife did not grow up that way. Like, it took years to drag her over to our side. I don't seem to care what other people think, and I really don't and I but but I do in, like, other like, in other ways. Like, I'm know, you I wouldn't want anybody to think of me as being coarse in my real life or, like, you know, I wouldn't I don't wanna make people unhappy.
Scott BennerLike, I'm I'm very concerned about what other people think in situations that make sense, you know, structurally with my relationships. But in this other stuff, like, I really don't care. Like, you are gonna listen to an episode where I'm just describing, like, laying on a floor bleeding from my and I realized, like, I I know how many people are gonna hear that, and it really doesn't I don't care. It's kind of fascinating. I don't know if the Internet fixed that for some people, like, knowing that when you have a a, like, a wider audience, like, it's just it is what it is, and it doesn't really matter.
Scott BennerBecause maybe I learned the same lesson you learned sitting in the cubicle when it was beeping, which is nobody really cares all that much. Yeah. You know? So and it really is about you. I think it all really goes back to that story that I've told in the podcast a number of times about taking my son to a diner when he was a kid after a baseball game and the and then putting us in a in a table that was in the middle of the floor surrounded by all these different booths.
Scott BennerAnd I could tell he felt uncomfortable sitting there because he felt like people were looking at us, and I just said, nobody cares. They're eating. No one's looking at us. And, like, when he looked around and realized they really don't see us, and it it was just a it was a great moment for him where he's like, oh, I I don't need to be everyone's not looking at me all the time. I don't I just don't know where I got that from because I grew up, like like, happy.
Scott BennerI was a fat kid growing up. Like, I know how you feel. Like, god, are people looking at my eyes? Is this happening? What are people thinking about me?
Scott BennerI don't know if maybe it's just maybe it's a defense mechanism I built up over being a kid. I'm not I'm not even sure. I don't know. I'm I'm in my fifties. I don't have time to figure all that out.
Scott BennerI just know I feel better not caring. So, anyway, don't worry about what other people think. You know? Did we, miss anything? Did we not talk about anything that you wanted to bring up?
Every Cure & AI Medical Research
Scott BennerTake your time because I have one more question for you. So tell me, make sure we didn't miss anything here.
CathyNo. I I think I've covered what I other than, I am involved in I've been to Philadelphia for the last five years in a rare disease community, and they are working on it's interesting. I I mean, it's not my work, but they're using AI to find drugs that are already being used or off label for other things and finding drugs that they don't have to be developed, for orphan diseases. So that's pretty cool. I'm actually
Scott BennerKathy, explain that to me. So what do they do? They load the the data about the molecule in and then ask them AI model. Is there something that it's not being used for that it could be valuable with?
CathyThey collect data, and it it's beyond my scope. But to find, hey, doctor. And and this is my understanding. Doctor in Montana used aspirin for rheumatoid arthritis, and that worked, you know, getting results. Pretty high level AI.
CathyThey've getting some grants. But, anyway, he's a doctor that, wrote a book, Chasing My Career, doctor Fagenbaum. I don't know if you've heard of him out in the Philadelphia area. He's at Penn.
Scott BennerIs he running this program?
CathyWhat's that?
Scott BennerIs he running the program that's looking into, like
CathyIt's two different things. What I got involved with is I have Castleman disease. It's a enlarged lymph node, and this was about ten years ago. But the subtype I have of that is fine. They removed it.
CathyI'm I'm fine. But got involved with it because, you know, you go Google this disease. It's like, holy crap. This is bad. And other subtypes are are really very serious.
CathySo I got involved with this online group, and what they they have some different ideas about medical research, and they actually crowdsource with actual patients. And I've, you know, filled out surveys and what I think the research direction should be and, you know, how I'm doing, and they have every scrap of my medical records possible. But, anyway, he cured himself. He was, given last rites, like, five times, and he found the drug that would cure him. And it's it's pretty cool.
CathyThey fly us out or a group of us to Philadelphia every year, and we have have a summit and participate in Zoom calls. And and with the crowdsourcing, they wrote a paper on there, actually listed as a collaborator on that paper, and they they spelled my name wrong.
Scott BennerIt's called ever Every Cure. Is that right?
CathyEvery Every Cure. And that's the other part of it. He's kinda bounced to working on that.
Scott BennerMhmm. I'm gonna reach out to them and see if he'll come on and talk about it. That's really interesting.
CathyIf you need some connections, like I said, I'm pretty well connected, and I would be happy to get you some connections if you want.
Scott BennerWell, then, Leah, let's make that easier. Would you please tell me somebody I can contact? Because I'd love to have someone come on and explain what this is.
CathyGoing to have to get into my email for those those names, but I'd I'd be happy to do that.
Scott BennerNo. Yeah. Send it to me later. That would be great. Okay.
CathyIt's very interesting work. I get to go out there and hear about the new studies and yeah. I mean, it's very top level, but, you know, I don't understand everything. But the to go there and just see those researchers and what they're doing. You know, these young kids at Penn are just really excited about what they're doing and and helping people.
CathyYou know, I see examples of that every day that like I said, I have the type that's not, you know, not an issue. They took it out, and I'm fine. But there's it can cause very serious disease, and to see the work they're doing is is fabulous.
Scott BennerNo. This is really, really cool. I'm so glad I asked you if there's anything else I didn't bring up because I'm gonna reach out to them with your contact and try to get somebody on. I'd like to get him on if I could. This is really interesting.
Scott BennerOkay. Oh, well, can I ask my last question?
CathyYes.
Scott BennerWhy are you buying stale donuts? Why don't you buy the fresh ones?
CathyYou know, I still walk by there in the grocery store. Like, those are really terrible. What's the expiration date on these? But I was sitting in the pharmacy, and it it took I must have been significantly low. But it because it said under 50, and it took a whole package of doughnuts.
CathyIt's sitting in the pharmacy because that's the only place in the grocery store that has a chair. So, you know, of course, nobody's helping me then, and nobody's asking. Hey, lady.
Scott BennerThere is a woman sitting in the pharmacy just scarfing down doughnuts. It it's and no one says anything to you. Like, that isn't that well, I get it. So are you talking about, like, the sale table at the front where they're trying to push out the older food and then there's, like, an orange tag on it that's making it cheaper?
CathyNo. It's a it's it was a whole pallet full of donuts. Think they've tried it.
Scott BennerI just think they should sell fresh donuts is all I'm saying. I don't know why they have to sell stale ones.
CathyI'm a former retailer. Oh, excuse me. I I get this. They were yeah. They were trying to offload the donuts, and I was helping them.
Scott BennerThere's a little cooler at the front of my grocery store, and it's just full of prepared foods. So prepackaged, like, meals that you just warm up, Right? That they you know, I think they make there at the store. But they just have big orange labels on them, and they are just at the end of, like, their usefulness. Like, you need to eat them today or tomorrow or they're just gonna get tossed.
Scott BennerAnd, man, people buy out of that cooler constantly. Like, they really like, people do. Like, I see them stop every time and look at it, they're like, oh, okay. And, like, I don't know. I just I've never looked in there.
Scott BennerI I guess that's maybe I just I'm lucky I don't need to save 75¢ on a piece of meatloaf. At the same time, like, I'm personally fascinated by how frequently people go to and there's a baked there's a table in front of it with baked goods in the same situation, like stuff that's coming out to the end of its date. I thought for sure that's what you were talking about. Anyway, Kathy, you're delightful. I really do appreciate you doing this with me.
Closing Thoughts
Scott BennerAnd I don't know how you got me to do this at 8AM, but I think it's just because I've known your name for a really long time and I was like, I like Kathy. So, I appreciate you coming on and adding your story to the to the podcast. I was just telling somebody this morning. They asked me what my favorite episode of the podcast was, and I said I I genuinely amassed that a lot. I don't know how to answer it.
Scott BennerThere's 1,800 episodes now. I really see the podcast more like a diary, And it's just sort of instead of my story on every page, I feel like it's just everyone else's story sort of through my lens maybe, you know, because I'm the one that kinda generally directs the conversations based on my interest and, you know, what pops up in my mind. So I said, don't know how to tell you. I they're all like, the whole thing is my favorite thing. I love the collection of what it is.
Scott BennerSo I just really appreciate you putting your your story into it. Thank you very much.
CathyMhmm.
Scott BennerIt's a pleasure talking.
CathyI will get that get that information to you.
Scott BennerKathy, you're lovely. Hold on one second for me. Okay? I'd like to remind you again about the MiniMed seven eighty g automated insulin delivery system, which of course anticipates, adjusts, and corrects every five minutes twenty four seven. It works around the clock so you can focus on what matters.
Scott BennerThe juice box community knows the importance of using technology to simplify managing diabetes. To learn more about how you can spend less time and effort managing your diabetes, visit my link, medtronicdiabetes.com/juicebox. The podcast episode that you just enjoyed was sponsored by Eversense CGM. They make the Eversense three sixty five. That thing lasts a whole year.
Scott BennerOne insertion every year? Come on. You probably feel like I'm messing with you, but I'm not. Ever since cgm.com/juicebox. This episode of the Juice Box podcast was sponsored by US Med.
Scott BennerU smed.com/juicebox, or call (888) 721-1514. Get started today with US Med. Links in the show notes. Links at juiceboxpodcast.com. Thank you so much for listening.
Scott BennerI'll be back very soon with another episode of the juice box podcast. If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple Podcasts and set it up so that it downloads all new episodes, I'll be your best friend. And if you leave a five star review, oh, I'll probably send you a Christmas card.
Scott BennerWould you like a Christmas card? If you're looking for community around type one diabetes, check out the Juice Box podcast private Facebook group. Juice Box podcast, type one diabetes. But everybody is welcome. Type one, type two, gestational, loved ones, it doesn't matter to me.
Scott BennerIf you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, type one diabetes on Facebook. If you have a podcast and you need a fantastic editor, you want Rob from Wrong Way Recording. Listen. Truth be told, I'm, like, 20% smarter when Rob edits me. He takes out all the, like, gaps of time and when I go, and stuff like that.
Scott BennerAnd it just I don't know, man. Like, I listen back and I'm like, why do I sound smarter? And then I remember because I did one smart thing. I hired Rob at wrongwayrecording.com.
#1832 Ninja Training, Mom Guilt, and Pop-Tarts
Bethany shares her daughter's recent diagnosis , overcoming the mom guilt of ignoring early symptoms , and how she translates the podcast to her stay-at-home husband.
Companies that Support Juicebox
Key Takeaways
- Bethany Googled her daughter's symptoms eight months before diagnosis but dismissed diabetes because she only knew about type 2 - highlighting how lack of type 1 awareness delays diagnosis even when parents notice something is wrong.
- Family autoimmune history matters more than you think - Bethany discovered her "hypochondriac" family actually had multiple undiagnosed autoimmune conditions (celiac, hypothyroidism, rheumatoid arthritis) that she had dismissed for years.
- The podcast's influence creates ripple effects: a diabetes educator who improved her own T1D management now teaches those methods to families, and previous T1D families at Jordan's school had already implemented 504 plan advocacy, making the transition easier.
- Dramatic improvement is possible quickly - Bethany went from 24% time in range to 83% in just two weeks after a "ninja training" class that condensed podcast concepts, followed by listening to the fat and protein series.
- Thyroid guidance for caregivers: if TSH is over 2.1 with symptoms, push for medication even if it's "in range"; ferritin under 70 can cause fatigue even when in range; silent celiac is worth investigating if you have iron issues.
Resources Mentioned
- Omnipod 5 - Free starter kit available, no four-year DME lock-in through pharmacy
- US Med - Diabetes supply delivery with automatic reorder reminders (888-721-1514)
- Juice Cruise 2026 - Listener cruise with stops in Puerto Rico
- Episode 413 - Deep dive on thyroid issues and management
- Fat and Protein Series - Understanding extended bolusing for complex meals
- Pro Tip Series - Condensed practical diabetes management strategies
- Small Sips Series - Curated takeaways voted most helpful by listeners
- 504 Plan Templates - School accommodation resources at juiceboxpodcast.com
Introduction
Scott BennerWelcome back, friends. You are listening to the Juice Box podcast.
BethanyMy name is Bethany. I am the mom of two, a 13 and 10 year old. And my 10 year old has type one diabetes, and she was diagnosed in June 2025, so just this year.
Scott BennerThe podcast contains so many different series and collections of information that it can be difficult to find them in your traditional podcast app sometimes. That's why they're also collected at juiceboxpodcast.com. Go up to the top. There's a menu right there. Click on series, defining diabetes, bold beginnings, the pro tip series, small sips, Omnipod five, ask Scott and Jenny, mental wellness, fat and protein, defining thyroid, after dark, diabetes variables, grand rounds, cold win, pregnancy, type two diabetes, GLP meds, the math behind diabetes, diabetes myths, and so much more. You have to go check it out. It's all there and waiting for you, and it's absolutely free. Juiceboxpodcast.com. While you're listening, please remember that nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan or becoming bold with insulin.
Sponsor Messages
Scott BennerA huge thanks to my longest sponsor, Omnipod. Check out the Omnipod five now with my link, omnipod.com/juicebox. You may be eligible for a free starter kit, a free Omnipod five starter kit at my link. Go check it out. Omnipod.com/juicebox. Terms and conditions apply. Full terms and conditions can be found at omnipod.com/juicebox. Today's episode is also sponsored by US Med, usmed.com/juicebox, or call 888-721-1514. Get your supplies the same way we do from US Med.
Bethany's Story Begins
BethanyMy name is Bethany. I am the mom of two, a 13 and 10 year old. And my 10 year old has type one diabetes, and she was diagnosed in June 2025. So just this year.
Scott BennerOh, goodness. Very, very recently.
BethanyYes.
Scott BennerHow about that? Was this a surprise, or was it a thing you saw coming?
BethanyI did not necessarily see it coming. I mean, I think I know you talk about, like, mom guilt a lot, and I think the guilt that I have is that I started googling some of her symptoms eight months, like, almost a year before she actually got diagnosed in DKA, and I didn't, like, take the next step. That's one, I think, positive benefit I've gotten from listening to the podcast is that you have some amazing people who are really good at advocating for themselves in the health care system, and I was not very good at that. And I kind of considered myself a little bit of a hypochondriac. So I would say for about eight months, I knew something was up. I had googled that it could be stress hormones or diabetes, and I honestly didn't know anything about type one diabetes. Mhmm. I only knew type two, and I was like, well, this kid clearly doesn't have type two. So I would say for, like, about a month or two before we finally got her diagnosed, I was pretty sure she had a blood sugar issue of some kind, but didn't know exactly what it was. But we don't have anyone else in our family with type one, so it wasn't necessarily on my mind.
Scott BennerYou know, it's funny. You and I chatted for just a couple of minutes before we started, and you came off as so, bold to me, but you're not. No. Oh, well, that's interesting. But you're such a good speaker. Did I misread that for that maybe? Do you have a job where you speak a lot?
BethanyI do. Yeah. I'm the president of a sales organization, so I'm pretty good at speaking usually. Maybe not today. We'll find out.
The Juice Cruise Story
Scott BennerNo. No. K. You're right. It's like, watch me set myself up here. I'll just bump right through everything. I just was on a cruise, and we did a couple of stops. And just a tiny bit of context, I'm taking a bunch of listeners on another cruise in June. It's called, Juice Cruise 2026. You should click on the link and go learn more about it. If you're a cruiser, I think you'll really enjoy it. One of the, stops for the Juice Cruise is Puerto Rico. So my wife and I just went on a cruise last week. Basically, it was like a taste test. So I was allowed to go on to get a vibe for the boat, make social media videos to share with people, stuff like that. And thanks so much to Celebrity for inviting me, and it was very nice. Now I feel like I have to say this. I had to pay my taxes on the trip. I had to fly myself there, put myself up. The cost of the cruise was taken care of by Celebrity. So thank you very much. We got off at Puerto Rico, and my wife and I decided to do a walking tour of the island. But it was a guided walking tour. And this 19 year old kid comes up, introduces himself. His name was Diego. And he set about maybe giving us the most complete, lovely, well thought out formulated breakdown of the history of the island and the people and what we should know and what we should care about and how things got to be. He was just excellent. What a great speaker. And we get to the end, and he walks us back to the ship, and we're, the last people there because a lot of people went and still went around the island. My wife and I were like, okay. That's enough walking for today. We're going back. I was giving him a tip, you know, financial tip, and I said, can I tell you something real quick before you go? I said, you were awesome. And my wife was very effusive and explained to him how well she thought he did. He wants to be a teacher. He was really great. And I said, but you have a a connecting word and it breaks the flow of your conversation. And I was like, do you wanna know what it is or would you prefer not to know? And he thought about it for a second. He goes, no. Tell me. And then I just, you know, I just said, look. When you get done with a thought, you say okay. But you say you're checking with us. And I said, and you've done such a good job of explaining what you're saying. You have such authority, clarity. Don't end your thought with, okay, like that. Yeah. Because it takes away all your power and it breaks the flow of your conversation. I was like, just pause quietly and then move on. And he was like, thank you so much. I'm like, I'm gonna remember that. And he's like, why did you hear that? And I said, oh, I make a podcast and I have like a thousand connecting words that I use that I I write down on sticky notes and try to stop myself from saying some with more success than others. But, anyway, I didn't wanna set you up to be like like, I'm great. I speak for a living, and then you're just all, like, tripping over yourself and everything.
Bethany100% what would happen. Yes.
Family Autoimmune History
BethanyI definitely have an authority that you have to carry at work that does not always transition, especially over to whatever reason, like, authority. I think I have just, like, a sense of authority. So, like, you know, police officers and people at the school and doctors, nurses. Like, I think I didn't realize how much you have to push within the medical system. And I have a lot of family history of autoimmune, and autoimmune is kind of hard to prove or hard to get diagnosis is on. So I really grew up with a family that I was like, man, you guys are all a bunch of hypochondriacs. And so it was hard for me to really push past that, especially with Jordan getting diagnosed to say, hey. If you think something's wrong, there probably is something wrong, and you really have to push to get that answer. I usually think, like, this person went to school. They've studied all these years. They know. And this whole experience has really taught me that, like, they can't know everything, and they don't know all the details.
Scott BennerYou've uncovered a lot of interesting things here. First, let's give me credit for pimping the cruise and highlighting the difference between being a confident speaker in some situations than others and opening up this other thing about you growing up. I really have done a masterful job right here. Let's move on. Juiceboxpodcast.com/juicecruise. Now, Bethany, what do you mean? You're growing up with a group of people who all had autoimmune stuff that they were having trouble getting diagnosis for, and you saw your family and your extended family members as a bunch of complainers?
BethanyYeah. Absolutely.
Scott BennerTell me more.
BethanyI think when we were in the hospital with Jordan and they're going through family history and they start asking about, do you have a history of any of these things? And I'm like, yes. Yes. Yes. Yes. This person has all of these problems.
Scott BennerBut I thought they were making them up.
BethanyI thought yes. Honestly. Like, my husband was even like, yep. Are any of these actually diagnosed? I'm like, well, if one person is celiac and three others have gluten sensitivities or wheat allergies, it would tell you that there is something going on there. So, yes, I did honestly believe a lot of times that they were just complaining and that they didn't have diagnosis for these things. So it's like, do you really have what you think you have? And then, you know, the doctor looked at me, she was like, okay. So it's it's from you. I was like, oh oh, I guess, yeah, I guess it is.
Scott BennerWell, can't we dig into his life a little more? There might be something there.
BethanyRight? I was like, nothing? Like, are you sure he had no contributing factors? But it was pretty much me. I found out a lot about my family after that diagnosis. They're like, oh, yeah. Hypothyroidism, and I have low blood sugar issues, and I have, you know, celiac, and just all these things came out. Your grandma had rheumatoid arthritis and just finding out that they were all related. So it gave me a little bit more respect maybe for my family members and an internal apology that I issued for thinking that they were all kind of, full of it sometimes and also just an understanding of how all of that is interconnected.
Thyroid Testing Advice
Scott BennerAnybody anemic, low iron, low energy?
BethanyNot that I know of. Although, I get tested for low iron and anemia probably every five years. Some doctor will be like, maybe you're tired because you're anemic, and I get a test done. And it's always negative. So I think that probably is in the back of my mind too a lot of times, but not anemia.
Scott BennerYou ever get your thyroid checked?
BethanyI actually just did. Through all of this, we've realized we need to be a little bit more proactive about our health care. So I actually just had a test ran last week, and I'm getting the results next
Scott BennerOkay. Let me tell you a couple things real quick. Yeah. On the anemia thing, if your ferritin is 70 or under, they're gonna tell you it's in range. I'm gonna tell you it could be the reason why you're tired. Mhmm. Okay? And iron infusion. Don't let them be like, take an iron tablet. It'll go back it'll go back nine years from now. You'll eat a whole field full of cows before your iron will go back up. So an iron infusion, you're especially if your insurance will cover it, is a quick way. Also, it's possible that you might have something called silent celiac if you have an iron issue. Look into that. And your TSH, if you have thyroid symptoms and your TSH is over, like, 2.1, say it's, like, 2.5, they're gonna be like, oh, it's in range. It's not that. But if you have thyroid symptoms and you have an elevated TSH over, like, two, two point one, you would probably benefit from the medication.
BethanyOkay.
Scott BennerDon't let them strong-arm you out of it because they don't understand the difference between green on the test and actual therapeutic needs.
BethanyOkay.
Scott BennerOkay.
BethanyI'll keep that in mind. I'm super fortunate. I think that's, like, one of the things that I said when I first reached out to you is just, like, I think we're so fortunate to have good people in our corner, and our general practitioner is one of the first people that when I told them what was happening with Jordan was like, you have to get in, like, today. Mhmm. Like, this is not a joke. You gotta get in. And has helped, you know, get testing done for my other daughter and, you know, is running these tests. So I think I'm pretty fortunate, but I am still gonna write these down because Yeah. I would get strong armed out of it.
Symptoms Before Diagnosis
Scott BennerOkay. So eight months, you're googling things. And what stops you from putting together what you googled and what you're seeing, is it that a, you just said, oh, that kid clearly doesn't have type two diabetes, so I'll stop thinking diabetes, or was it your nervousness to find out the truth?
BethanyIt just kept saying diabetes, and I only knew about type two. So, like, I truly did not know anything about type one. Yeah. So I think that was a piece of it. And I think, like, looking back on it, I think that she was going through honeymoon phases where she'd have issues for a little bit. She, you know, would have issues with wetting the bed or and things that just this kid had never had. And then it would go away, and she'd be good for a couple months or, you know, a month. And then it was little things that didn't really tie together until it got to a point where it was so obvious something was wrong. I think also I have a niece who has bladder issues, and my husband's family would say, like, bladder issues run-in their family, especially with kids. And so I was kinda like, well, maybe that is what it is, and that is what the problem appears to be. It also talked a lot about, like, hormones and stress when I googled it, and we were in the process of moving. We had family moving into town. She was going through, like, what I would consider hormonal type changes. And so I thought, okay. That's that seems more realistic and probable than diabetes until, like, the last months before we actually took her in. I started to see, like, very direct relationships to her food and how she was acting beyond hangry if we had a plan for food and then the plan didn't happen or having a slushie that day and then not feeling good that night. And that's when I started to realize there's a direct relationship between these two things happening. And then, you know, as they got worse, I was like, we have to get this figured out. But it took a while for me to get there.
Diagnosis Day
Scott BennerSo you get her to the hospital, but in DKA. So what are those last hours like?
BethanyYeah. So I had reached out to our general practitioner, said I think she might have a UTI. Here's all the symptoms. She's drinking a ton of water. She's going to the bathroom all the time. I just need to get her checked. You know, they responded back that afternoon, and I didn't see the message. They called me, and they said, hey. Can you get her in first thing in the morning? And that didn't really ring any bells to me that they were being that urgent about it. But my husband was taking her golfing. He's a stay at home dad, so they were going golfing that morning. And, you know, they're both irritated that I'm delaying their tea time. It was funny that morning, I had offered her a Pop Tart. Really just because I wanted to eat the other Pop Tart. And she was like, no.
Scott BennerBethany, you were like, I want a Pop Tart, but I'm an adult.
BethanyA 100%.
Scott BennerIf I can get this kid to eat one, then I'll be able to go I can
Bethanyhave the other one.
Scott BennerIt's open. I should just eat this.
BethanyYeah. She was like, no.
Scott BennerPlease tell me how old you are.
Bethany38.
Scott BennerThat's awesome. Keep going. I'm sorry.
BethanySo I'm 38. I'm offering this nine year old a pop tart. I'm like, no. Seriously. Eat it. She's like, no. I really think I have to start eating better. And I was like, let's start on Monday. Like, let's start the diet Monday. We don't need to do that today. So I forced her to take the Pop Tart and
Scott BennerYou forced her to you can't just eat this thing so I can have one.
BethanyAlright. The golf course. You're gonna get hungry. Like, you get hungry when you golf. So, you know, I gotta call an hour later. Hey. You know, the doctor says she has type one diabetes. I have no idea what's going on. They told us to go to children, and, you know, do you want us to come pick you up? And that kinda started the whole process. She was just kinda barely in DKA, so they said we caught it. They said, like, within three days, we would have been in the ICU no matter what.
Scott BennerI see.
BethanyAnd so we have a satellite children's hospital in our area, but it's not a very big area. They don't have overnight care in the endocrinology unit. So they flew us down to Little Rock. So we had to take a Life Flight that day to get down there, and we spent the next three days in the hospital just learning how to manage all of this.
Stay-at-Home Dad Discussion
Scott BennerBy the way, respect to him tricking you into paying his bills. I did it to a a lovely woman too.
BethanyHe always says he knows when to invest because we got married when we were 18. So he's like, I knew early. I invested early.
Scott BennerOh my god. My wife was in college. I was like, this girl's gonna make money. I was like, I can't I could tell right away. It's like, she's smart, hardworking, smart. She's pretty. What am I doing here?
BethanyRight. You gotta take your chance.
Scott BennerI ain't letting her talk to anybody else. Take your shot. He got you when you were 18.
BethanyYeah. We were still in high school.
Scott BennerHe did trick you.
BethanyYeah. Yeah.
Scott BennerYeah. Yeah. How do you do it? Is he super handsome?
BethanyYeah. I think he's pretty good looking. He's a hard worker, good guy. He's got a good personality.
Scott BennerHard worker. I've been a stay at home dad. Let's not oversell that. So
BethanyI mean, he would probably agree. He would probably say the same thing. He says he's living the dream.
Scott BennerOh, it's awesome. I swear to you, there was a time in my life where if someone would've made me go back to work, I would've cried. I would've just stood up and just burst into tears. I've been like, no. I love my life.
The Podcast's Impact
BethanyBut that made us think of an impact because you have, Scott. And I think that's, one of the reasons why I reached out to you is because, to be fair, I also told you our story was boring. But, you know, it's because I really have felt the impact of the work that you've done and how it got to our area before we had this diagnosis. And we've definitely had the benefit of people taking the work that you're doing and, like, moving it forward. So
Scott BennerCan you explain that to me? Yeah. I'm sorry. Thank you. That was very nice. I appreciate that. But but explain that part to me. Like, I'm not dismissive. I just I don't wanna sit and make it feel like you're saying nice stuff to me. And I'm trying to find out what you meant by that. Like, people took it and did what? What is that piece?
BethanyOh, I mean, I think the first month of after diagnosis, we got the do not die, you know, education in the hospital and the one you know, the three inch binder of information. And, that first month for us was super rough. Like, we didn't know about goals. We were just kinda told to stay higher because coming down fast is dangerous. Had been told to pre bolus. We had an average blood glucose of, like, over 200 that first month. And then we had a follow-up four hour education meeting. And our second diabetes educator is amazing. She has type one, but she gave us what she called ninja training. And that was basically, like, if you took the pro tip series and condensed it to, like, a four hour in person class, that's what it was.
Scott BennerMhmm.
BethanyAnd she talked about your podcast quite a bit, and she had all of the episode lists printed out at that time on the table. And it was like, you can call me anytime you want. If you start listening to these, they're gonna get you through all of this. Oh. So I had that. And then my daughter's school has two other kids that have type one, and those parents really, like, took your advice and lists, and they, like, implemented it. So we walked into a school where every single teacher and employee has already had emergency diabetes training every single year. The nurses knew what to do, and, you know, there are specific teachers who had already taught these kids. And so they had really gone through all the hard work of, like, advocating, getting processes put in place. You know? So we were able to get a huge benefit from that, I think.
Scott BennerCan I ask you a couple of questions? Yeah. First of all, I realized I'm so relaxed and happy since my vacation, juiceboxpodcast.com/juicecruise. My emotions are very, like, raw right now. I'm not all like I would normally be a couple days before Christmas. I don't feel harried or crazy. I can't believe this is the first time I've ever gone on vacation right before Christmas. What a great thing to do. Leave your anxiety behind and do that, people. It's awesome. Make sure I'm I'm understanding you correctly. I'm not trying to take credit from anybody, but the hospital setting, when you're getting your training, there's a person talking to you, and now you've listened to the podcast since then. Right? Yeah. Is that person and I'm not trying to take anything away from them. Are they talking to you through a lens of having listened to this podcast, or are they a person who really understands the whole thing and offered you the podcast as a way to take that idea home with you? And I'm not trying to take credit for their knowledge, but if it is a thing that came from the podcast, I am interested to know that.
BethanyI don't know for sure. Mhmm. But she did say that she hadn't been taking care of her type one diabetes up until a few years ago and that she had listened to your podcast and then went and got like, she is obviously, like, in the endocrine system. I mean, she has the knowledge now, and I think that that's a piece of it. Like, she truly understands it. But she definitely told us, like, you need to go listen to this to take this home with you so you can keep getting the education that you need.
Scott BennerTwo thoughts. Mhmm. If that person is listening, please come on the podcast and tell me that story.
BethanyI will tell her too.
Scott BennerPlease. And my second thought is and please, I hope this doesn't sound self serving because I don't mean it this way. When you were saying that, I thought very quietly in my head, I thought, oh, I did it. Yeah. Like, I accomplished the thing I tried to do. I felt so accomplished at that moment. Like, you're telling me that I found a person with type one diabetes who is also a diabetes educator, and the thing that I gave them elevated their own health, and then they passed it on to you.
BethanyHonestly, 100%. Like, that is the main reason I reached out with to you is just to, like, thank you and tell you that. Like, it can be frustrating to think, like, you're not having the impact that you think you you should be having. I think I had seen a post where you had said something like that. And here I am sitting here, like, knowing that the thing that you are talking about, at least in my area, it's happening and working. And, I mean, we went into that class 24% in range. And in the two weeks after that, we were eighty three percent range. God. And that was the first time I had listened to the podcast. I kind of get OCD. Like, I dive into things, I really dive into them. So I had actually tried not to go online and get all the answers right away. I was like, let me just figure out what this thing is per the book. But after that, I started listening that day. I listened to the fat and protein series that day, and it just got us got us going.
The School Preparation
BethanyYeah. Like, I met a couple of the people, and and multiple people have told me, like, these people went and advocated at that school. Like, they are known for the work that they did in getting that school on the track. And I would say, like, I appreciate it a lot more, especially these last two weeks because our school nurse went on vacation, and we had the fill in nurse. And my daughter came home, and she was like, yeah. This lady's not in it day to day. You could just tell. She's not in diabetes the way our normal school nurse is.
Scott BennerShe's just trying to get through this week and get her checked.
BethanyOh, I'm telling you. My husband got the schools, like, put in lockdown last week because they freaked out. I mean, like, we've we've experienced what I'm sure other people do every day, and it's been super frustrating. But prior to that, I mean, seriously, we told the schools, you know, hey. Jordan was diagnosed this summer. This is a new thing in our life. Yeah. I had your five zero four plan, are in sixth grade five zero four plan, and it was like, all people in the school have to have this education. And, like, it was like checking off going down the list. It was all already done from this other family who had done all the advocacy work, and she said that she listened to the podcast. That was one of the first things that she asked me when I met her. Like, do you listen to the podcast?
Scott BennerWow. I'm so happy. I don't really know another thing to say. I can't decide if this is giving me the energy to make a decades more, podcast or if I just wanna now ask all of you to just send me a dollar so I so I can so I can so I can retire.
BethanyI think you're gonna have to keep working.
Scott BennerI've done it, everyone. If you all just sent me $1, I could get out of this, I think. But, you have no idea. Like, I'd miss it in two seconds.
Closing
Scott BennerThat's it.
BethanyI appreciate that.
Scott BennerYeah. Thank you. Yeah. I appreciate you asking me even though I'm an egotistical lunatic who, is condescending to people all the time.
BethanyI mean, really, what was I thinking? But I
Scott Bennermean, you're an idiot, obviously.
BethanyRight. I'm the problem.
Scott BennerDid you hear he called her an idiot? She laughed. She felt a lot of pressure. Was very cringey.
BethanyVery demeaning.
Scott BennerThank you. Yeah. Here we are. Thanks very much. Hold on one second for me.
Sponsors and Closing
Scott BennerA huge thanks to my longest sponsor, Omnipod. Check out the Omnipod five now with my link, omnipod.com/juicebox. You may be eligible for a free starter kit, a free Omnipod five starter kit at my link. Go check it out. Omnipod.com/juicebox. Terms and conditions apply. Full terms and conditions can be found at omnipod.com/juicebox. This episode of the Juice Box podcast was sponsored by US Med. Usmed.com/juicebox or call 888-721-1514. Get started today with US Med. Links in the show notes. Links at juiceboxpodcast.com. Okay. Well, here we are at the end of the episode. You're still with me? Thank you. I really do appreciate that. What else could you do for me? Why don't you tell a friend about the show or leave a five star review? Maybe you could make sure you're following or subscribe in your podcast app, go to YouTube and follow me, or Instagram, TikTok. Oh, gosh. Here's one. Make sure you're following the podcast in the private Facebook group as well as the public Facebook page. You don't wanna miss please, do you not know about the private group? You have to join the private group. As of this recording, it has 74,000 members. They're active talking about diabetes. Whatever you need to know, there's a conversation happening in there right now. And I'm there all the time. Tag me. I'll say hi.
Scott BennerHave you tried the small sip series? They're curated takeaways from the Juice Box podcast, voted on by listeners as the most helpful insights for managing their diabetes. These bite sized pieces of wisdom cover essential topics like insulin timing, carb management, and balancing highs and lows, making it easier for you to incorporate real life strategies into your daily routine. Dive deep, take a sip, and discover what our community finds most valuable on the journey to better diabetes management. For more information on small sips, go to juiceboxpodcast.com. Click on the word series in the menu. Have a podcast? Want it to sound fantastic? Wrongwayrecording.com.
#1831 72 Days Later - Part 2
Kelly opens up about raising two teens diagnosed with Type 1 at age six. She discusses international living , multiple miscarriages , alarm fatigue , and managing different sibling personalities.
Companies that Support Juicebox
Key Takeaways
- The JBP AI Autoimmune Explorer tool revealed Zach's symptoms (back pain, cold intolerance, fatigue, inflammation) potentially link to Hashimoto's thyroiditis - and he's never had his thyroid checked despite his daughter's type 1 diagnosis.
- Don't obsess over Clarity reports daily during the honeymoon period - the data is too noisy to draw meaningful conclusions. Focus instead on understanding settings, timing, and food impacts.
- Perspective matters: Scott at 54 has roughly 1,368 weekends left, while Zach's daughter has decades ahead. There's no need to figure everything out in the first 72 days - time and experience are the only things that make diabetes management make sense.
- The Bernstein low-carb approach works for some, but the Benner philosophy advocates learning to bolus for any food rather than strict restriction. Whole foods are recommended, but rigid dietary rules aren't the only path to success.
- Back pain often has a significant stress component - "Healing Back Pain" by John Sarno explores how psychological stress manifests physically, and reading it helped Scott eliminate his chronic back pain.
Resources Mentioned
- Touched by Type One - Organization supporting people living with type 1 diabetes
- Tandem Mobi with Control IQ Plus - Smallest pump with auto bolus, multiple wear options, and iPhone control
- Eversense 365 - One-year wear CGM with unlimited data sharing
- JBP AI Autoimmune Explorer - Interactive tool to explore 32 autoimmune conditions and their overlapping symptoms
- "Healing Back Pain" by John Sarno - Book about how stress manifests as physical back pain
- Defining Diabetes Series - 70+ short episodes breaking down diabetes terminology with Jenny Smith
Introduction
Scott BennerWelcome back, friends, to another episode of the Juice Box podcast.
ZachAlright. Hi, Scott. Thanks for having me. My name is Zach. Upstate New York is the location. My daughter was diagnosed with type one diabetes exactly seventy two days ago.
Scott BennerThis is part two of a two part episode. Go look at the title. If you don't recognize it, you haven't heard part one yet. It's probably the episode right before this in your podcast player. When I created the defining diabetes series, I pictured a dictionary in my mind to help you understand key terms that shape type one diabetes management. Along with Jenny Smith, who, of course, is an experienced diabetes educator, we break down concepts like basal, time and range, insulin on board, and much more. This series must have 70 short episodes in it. We have to take the jargon out of the jargon so that you can focus on what really matters, living confidently and staying healthy. You can't do these things if you don't know what they mean. Go get your diabetes defined. Juiceboxpodcast.com. Go up in the menu and click on series. Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan.
Sponsor Messages
Scott BennerThe episode you're about to listen to was sponsored by Touched by Type One. Go check them out right now on Facebook, Instagram, and, of course, at touchedbytype1.org. Check out that programs tab when you get to the website to see all the great things that they're doing for people living with type one diabetes. Touched bytype1.org. Today's episode is also sponsored by the Tandem Mobi system with Control IQ Plus technology. If you are looking for the only system with auto bolus, multiple wear options, and full control from your personal iPhone, you're looking for Tandem's newest pump and algorithm. Use my link to support the podcast, tandemdiabetes.com/juicebox. Check it out. The podcast is also sponsored today by the Eversense three sixty five, the one year wear CGM. That's one insertion a year. That's it. And here's a little bonus for you. How about there's no limit on how many friends and family you can share your data with with the Eversense Now app? No limits. Eversense.
The JBP AI Autoimmune Explorer
Scott BennerAnd then you can hit the suggestion button, and it makes little lists for you. And then you can copy that or email it to yourself to go to the doctor with and say, hey. Listen. I've got these symptoms. It's worth asking, like, is this something? You can also kinda see where they overlap with other issues. It's certainly not a diagnostic tool. I'm not telling you you're gonna it's just kind of like a it's like an educational thing, but more kinda for fun to, like, just kinda click on it and see for fun. I'm the only one who would think this is fun, by the way. But, like, you know, like, where you can see where there's overlaps with different autoimmune issues.
ZachThat sounds like a great tool. I can't wait to check it out.
Scott BennerYeah. Yeah. So something like that you can take a look at. You know, you can type words in. You know, I'm tired, and it'll bring up stuff. But anyway, like, I just find that when people are in that situation, it's hard to know. You know what I mean? Like, who's gonna like, listen. Well, I'll do it with you for a second because you said you have a lot of things. Yeah. Do you have back pain? Yes.
ZachWell, I have, like, three collapsed discs in my back from playing too much golf. Yeah.
Scott BennerI'm gonna call it back pain. Do you have belly pain? No. Brain fog?
ZachI mean, I don't know what that is. I'm less focused than I used to be. I think it's because of the phone.
Scott BennerButterfly rash?
ZachNo. I don't know if
Scott BennerChronic diarrhea?
ZachNo. But I you know, like I said, I'm Ashkenazi. So
Scott BennerCold intolerance?
ZachYou know, that's changed, I think, when I hit I don't know. Let's call it 38. I'm much more cold in the house.
Scott BennerOkay. Do you have depression?
ZachNo. Others in my family do, but I do not.
Scott BennerDry eyes? Nope. Let's see. Do your eyes stick out? Nope. Fatigue?
ZachYeah. I mean, again, I'm getting older. I'm not way fish.
Scott BennerNope. Fever? Fever. Yes. It's not way fish. It's acts like I've put on a couple. Do you have a goiter? No. No? Has your hair started to gray?
ZachI mean, I'm 41, Scott. What do you want from me?
Scott BennerHair graying? You have hair loss?
ZachYou know, maybe the forehead's starting to kinda play a more prominent role in my life, but it's not significant.
Scott BennerHeat intolerance?
ZachIt's not the same thing as
Scott BennerNo. No. You get you get overheated easily.
ZachOh, sorry. The opposite.
Scott BennerYeah. No? Inflammation. Do you think you have inflammation?
ZachWell, I mean, to the extent that I have arthritis in my elbows or my hands or my ankles. Yes.
Scott BennerHow about itchy? Are you ever itchy?
ZachI have dry skin. I live in Upstate New York.
Scott BennerUh-huh. Just feeling Jaw pain, joint pain, or joint stiffness?
ZachNo. But this is clearly the end of a pharmaceutical commercial.
Scott BennerIt was done everything. You have low blood pressure? No. Malabsorption? Of what?
Scott BennerYou think your body is not absorbing your nutrients correctly?
ZachOh, I can't seem to raise my HDL, Scott. I have a like, familial hypercholesterolemia.
Scott BennerOh, wow. Any numbness? Nope. Okay. Patchy hair loss? No. Photosensitivity?
ZachWhat does that mean? Like, have a seizure in the movies?
Scott BennerNo. Like, does light bothers your eyes, gives you headaches, stuff like that? No. No? Do your fingers ever get cold at the end and can't warm up, turn blue? No. No? Any sexual dysfunction you're willing to share? No. No? Shaky skin issues? You said yes. Here's one. Smooth tongue. Spine stiffness. Tachycardia. I
Zachdon't mean to laugh for those with smith tongues. I just never never heard that.
Scott BennerTremors, vision loss, weakness, weight gain, weight loss, anything.
ZachMy father is 75, but he has essential tremor.
Scott BennerThat's your father. Weight gain, weight loss?
ZachNo. I'm just always been slightly heavier than my doctor would like me to be.
Possible Hashimoto's Connection
Scott BennerOkay. So you have so four of the things that we mentioned for you might link back to Hashimoto's. So have you ever had your thyroid checked?
ZachNever. No. And so that's where we are, Skyler. Like, the whole family's gotta be checked. My younger daughter's gotta be checked, and we'll see where where it all shakes out. Mhmm. You know, some of the don't even bring this stuff up.
Scott BennerNo. They're never going to.
ZachColumbia certainly has. They wanna test you for this and that. I mean, certainly for type one. It's interesting how the practices seem to vary.
Scott BennerYeah. No. I mean, it's just anyway, like, I bring it up because I don't know if these things are gonna help anybody, but I just think it might be valuable for people to just kinda click around a little bit and see because, I mean, I made it because of how many people, you know, come on here all the time and talk about this kind of stuff happening in their life, and then you ask them if, you know, have they checked themselves? And they're just like, no. No. I don't have time for that or something like that. There's one woman I was talking to recently. I mean, she quite clearly has Hashimoto's. And she's like, well, the next time I'm at the doctor I'm like, no. Not the next time you're at the doctor. I was like, get off with me and call the doctor. I was like, I'm like, what do mean the next time you go to the doctor? Right. You know?
ZachGotta be vigilant. Right?
Scott BennerYeah, man. You gotta help yourself a little bit. Also, if your kid has an autoimmune issue, it's possible that you do too. Like, so are there any in your family line or your wife's family line that you're aware of?
ZachI know. That was that's always your first question, Scott. I'm surprised I didn't get it yet.
Scott BennerWell, seventy two days. I don't know what you know. No.
ZachI mean, we're not aware of any of that. This was totally out of left field.
Scott BennerNo celiac in the family?
ZachNo. Which is common among Ashkenazi Jews, but no.
Scott BennerThat's why I asked because you brought that up. Yeah. Yeah. Yep. And so wait. You're not related to one person who has hypothyroidism?
ZachThat I'm aware of, Scott.
Scott BennerYeah. And not that you're aware of. Yeah. You don't have, like, a sleepy aunt or anything like that?
ZachNope. My aunts are wonderful.
Scott BennerOkay. Your aunts are they could be wonderful and sleepy, couldn't they?
ZachThat's true.
Scott BennerCan you imagine if you were sleepy that makes you not wonderful? That'd be crazy. Zach, you're out of your mind.
ZachSleepy people are quite wonderful.
Caregiver Burden Discussion
Scott BennerYeah. Of course. Zach, in your note, you say caregiver burden, asking, like, how did I get through the first sixteen years of Arden? Yeah. Go ahead and ask your questions. I'll do my best for you.
ZachWell, I mean, the thing I always think of with you is sort of like you were able to dive in fully and get people to come to you to have these conversations. Certainly not learning anything from me, I didn't already know, but others, what I wouldn't give to be able to just work all day on my daughter's, you know, condition. But I I guess I'm maybe I'm far enough down a career path. I should probably try to stay focused on that, but it's hard. It's hard to have a child who has type one diabetes and still be a primary, you know, breadwinner for your family. So I gotta get back to that. Not meeting right now, but just in general. I have to regain my focus for my family's livelihood, while also continuing to do as good as we possibly can for Hannah.
Scott BennerHas your life been knocked off course the last couple of months?
ZachOh, I mean, Scott, in the first week, I just you know, you grieve. Right? Yeah. And then you you try to kinda rally from there. It does feel like a constant report card. You know, you're always looking at the clarity reports and trying to do better, and then type one's always throwing you a curveball. But I think as much as any family, we're we're slowly trying to incorporate it into our life and continue our pursuit of bliss and not let it stop us from, you know, giving our kids a wonderful life. But it's that first week was you know, you just realize how big it is and how early it is in her life and how long we're gonna deal with it. You know? And you hear people talk about how hard puberty is and then how hard sort of emotional high school period is and how hard it is when they go to college, and that's all ahead of us. But, you know, hopefully, by then, we'll be more comfortable in some ways with the
Scott BennerYeah. Probably not. I mean, no. No. Of course, you will. I was joking. But six months from now, you'll look back, you won't recognize this person. A year or two from now, you'll listen back to this and think, oh my god. I was out of my mind.
ZachI can't wait. Yeah.
Don't Obsess Over the Data
Scott BennerYou know what I mean? Like and at the same time, everything you said is completely reasonable. It does throw your life into upheaval. Are paying way closer attention to something you didn't know anything about seventy three days ago. And, you know, you're working through trying to absorb information, apply it, is it working? I would tell you I'm gonna say kind of something backwards, but I think I wouldn't look at the clarity report every day. Yeah. I think maybe I would focus on settings, timing, understanding the impacts of the food. Yeah. Just try to get that together first. Also, she's actually having a honeymoon, to understand what's happening, there'll be takeaways from it long term, but, like, day to day I don't know how I mean this. Like, if you're wanting to drive a car in a straight line on a drag strip, and one day, the light turns green, you stomp on it, and you go. You're like, oh, it took us nine point five seconds to go a quarter of a mile. And then the next day, Godzilla steps on the track while you're doing it. You can't take the data from the Godzilla day and learn anything from it, really.
ZachRight.
Scott BennerYeah. You know? So if you've got something just going crazy on you out of nowhere, I mean, that's just gonna cause more confusion than value, most likely.
ZachAn illness.
Scott BennerYeah. Yeah. Yeah. And you guys have been sick recently and all that other stuff. Right? So, like, once the honeymoon's over, then the takeaways should start piling up in a more meaningful way. I think that the value here if I could say one thing to you that I think would be incredibly valuable, is that she's three, and she's probably gonna live into her eighties. And you're 40, and you're probably gonna live into your eighties. So you've basically got, like, you know, the next twenty years to get her ready to graduate from college, and you'll still be around after that if she has any more questions. You're not gonna get this whole thing figured out in the next seventy two days. And that's difficult if because I've been where you've been, and I have felt what you're feeling. Yeah. And there is a mad rush to get it all figured out. And the truth is is that the only thing that's gonna make this make sense for you is time and experience. Yeah. That's it. You just gotta live with it every day, man, and not let it knock you down and take some takeaways. Look for repetitive stuff so that you can say that I know what's gonna happen is gonna happen. Like, I've seen this happen so many times. I know this is gonna happen next. Mhmm. Because you might hand me your daughter right now, and I might be able to keep her from having so many lows during the day in the exact same setup that she has right now. But the good news is that you'll be able to do that at some point as well.
ZachLook forward to that. Yeah. Appreciate the advice.
Scott BennerDoes that make sense?
ZachIt does. I mean, unfortunately, you undershot on the life expectancy for her. I had four grandparents. Right?
Scott BennerGo ahead.
How Many Weekends Do We Have Left?
ZachOne of them was a chain smoker. Well, chain smoker. She smoked. She lived into her mid eighties. The rest of them were all 95. So you should have said a 100, Scott, if you wanted to make me feel good.
Scott BennerI just heard this thing the other day that really bummed me out. But now I don't remember the number, so I'm just gonna like, I'm gonna plop it back in here because I've got this window open still. But I was listening to somebody tell me at my age how many more weekends I have left.
ZachOh, yeah. I've seen these charts.
Scott BennerAnd it wasn't a big number, Zach. I gotta tell you. Yeah. And Yeah. And then I saw it on a Sunday afternoon. So the actuarial breakdown for me is I'm a man at 54. My statistical life expectancy is that I roughly have twenty six more years left.
ZachNah. You'll do better than that, Scott. You got the GLP ones now.
Scott BennerWell, I'll tell it I got a GLP in a second, see what it says. But my son's 26. Yeah. That entire time felt like it went by in a split second. Yeah. And I was younger when it happened. So what you're telling me is I'm gonna blink six more times and drop dead. Is that what this is gonna be? You know what I mean? Anyway Scott,
Zachit's even worse because your baseball is not gonna be as good as your son's for those twenty six years.
Scott BennerNo. Exactly. So how many more weekends do I have left? 1,544.
ZachGotta make them count, Scott.
Scott BennerHow am I gonna do that? I gotta go grocery shopping.
ZachArden's not home anymore, is she? What are you what are you so worried about the grocery store?
Scott BennerShe came back, and she's going to school from here right now. She's got another not quite a year of school left that she'll be going to grad school. So Nice.
ZachCongrats to her.
Scott BennerYeah. By the way, that's very nice. Gemini is trying to be kind to me. It says seeing a finite number between thirteen hundred and fifteen hundred, which I who said 1,300? Like, wait. Then I realized that number's for a woman my age. A man my age, it's thirteen sixty eight.
ZachYeah.
Scott BennerIt says I could see it could be a bit jarring. Right. Thank you, Gemini. It was a bit jarring.
ZachYeah. The AI is trying to be a therapist. Right?
Scott BennerNo. But but but seriously, like, that, you should reverse engineer what I just said. You have so much time, you know, just around the diabetes piece that the person you are today trying to understand what a 14 year old's life is gonna look like with diabetes and an 18 year old's life and somebody in college and what happens when she goes to get married. Like Yeah. It's really another version of, like you know, I tell my wife all the time that worry is a waste of imagination. She does not listen. But, to like, right now, you are worried about things. With such incomplete data, you have no idea what it is you should be worried about or not worried about. Right. It would be a shame if you spent this time with your young family, bringing your hands over something that never came true. That you never even needed to think about it for. So I tell you, man, it's timing amount. Understand the impact of your food. Don't stare at a high blood sugar. It's pretty much it. You know what I mean? And then you do that at the different parts of your life and things work out. And a six nine a one c, seventy two days after diagnosis with a three year old is absolutely brilliant.
ZachThank you, Scott. Yeah. I appreciate it.
Scott BennerYeah. You're doing well.
ZachAnd you deserve some credit for that. You know?
Scott BennerI deserve all the credit for it, Zach, but I don't like to bring it up. It makes me sound you know what I mean? I listen. I gotta tell you something. There's a family friend who I've helped with some stuff. Right? And their situation is so much better now. They were on the phone last night explaining it to my wife, and my wife hangs up the phone, and she looks at me and I went, I did that. I fixed that whole thing for them.
ZachAnd my wife Well, I don't mind you saying it. You don't have to be modest here. You're doing big things in this space. Thank you, Zach.
Scott BennerI was like, that was me. I fixed all that for them. And then and my wife makes that face at me, and I laugh because I'm joking, but I'm not. And I said, this is why it's important for me to have a podcast. I can't be limited to just helping one person at a time.
ZachI mean, I can't believe I'm speaking to you, Scott. I mean, I emailed you the second day in the hospital. I'm not expecting a response, here I am. So it's pretty cool.
Scott BennerNo, man. I like I don't get your perspective that often. The just a few days into it perspective. Yeah. So I like to have that sometimes. I don't want too much of it because then the podcast is just a bunch of people going, I don't know what's happening. I'm like, yeah.
ZachI'm spinning out of control.
Mid-Episode Sponsor Break
Scott BennerYeah. Yeah. Yeah. Episode is sponsored by Tandem Diabetes Care. And today, I'm gonna tell you about Tandem's newest pumping algorithm. The Tandem Mobi system with Control IQ plus technology features auto bolus, which can cover missed meal boluses and help prevent hyperglycemia. It has a dedicated sleep activity setting and is controlled from your personal iPhone. Tandem will help you to check your benefits today through my link, tandemdiabetes.com/juicebox. This is going to help you to get started with Tandem's smallest pump yet that's powered by its best algorithm ever. Control IQ plus technology helps to keep blood sugars in range by predicting glucose levels thirty minutes ahead, and it adjusts insulin accordingly. You can wear the Tandem Mobi in a number of ways. Wear it on body with a patch like adhesive sleeve that is sold separately, clip it discreetly to your clothing, or slip it into your pocket. Head now to my link, tandemdiabetes.com/juicebox, to check out your benefits and get started today.
Scott BennerWhen you think of a CGM and all the good that it brings in your life, is the first thing you think about, I love that I have to change it all the time? I love the warm up period every time I have to change it? I love that when I bump into a door frame, sometimes it gets ripped off. I love that the adhesive kinda gets mushy sometimes when I sweat and falls off. No. These are not the things that you love about a CGM. Today's episode of the Juice Box podcast is sponsored by the Eversense three sixty five, the only CGM that you only have to put on once a year, and the only CGM that won't give you any of those problems. The Eversense three sixty five is the only one year CGM designed to minimize device frustration. It has exceptional accuracy for one year with almost no false alarms from compression lows while you're sleeping. You can manage your diabetes instead of your CGM with the Eversense three sixty five. Learn more and get started today at eversensecgm.com/juicebox. One year, one CGM.
Predictors of Success
Scott BennerScott, I'm thinking of leaving my family and going to I
Zachdidn't say that. You did.
Scott BennerThen I'm going to the Everglades. I'm gonna hunt snakes until one of them gets me. I'm done. I'm out. You imagine.
ZachI might discover the cure for type one in the venom.
Scott BennerIn that park, you might. There's something going on in there. But, no, seriously, like, you're gonna be fine. Like, I'll tell you right now, predictors of success for me, one of them is a level of interest in this whole thing. You have that. You know what I mean? Like, I think just being interested and paying attention is a predictor of success in type one diabetes, probably in everything. But people who have your level of interest usually end up doing pretty well.
ZachThe funny part is, Scott, I spoke to a mom early on and she said, you know, my husband's really analytical, and I'm kind of a little more of a feel in terms of the ball of saying. And, you know, we're kind of ying and yang it, and we're doing a great job. And I was like, okay. Whatever. Now here I am seventy two days later, you know, spinning out of control, reading everything. You know, my wife is just kinda winging it, and who's a better baller, sir? That would be my wife Michelle.
Scott BennerIt's her. Yeah. She feels the art. Right?
ZachYeah.
Scott BennerThere's a little bit of an art to it. Yep. You know what they say? Like, let go. What if you hold on too tightly, it slips away? What is that about there's something about holding on to something? I don't really Something. I didn't go to college.
ZachSomething. Yeah.
Scott BennerYeah, Zach. I don't know. Just don't hold on too tight. It's gonna be okay. You got fast acting sugar in the house and some glucagon. I think you'll be alright.
ZachBlow gummies. Can't, recommend him enough.
Pump Changes with a Toddler
Scott BennerHow is she with the pokes and the devices and stuff like that?
ZachWhat's a word that's worse than terrible?
Scott BennerDoes she scream while it's happening?
ZachShe's two and a half, Scott. You know, the funny thing is, like, now she's at the point where, you know, we got the good tip early on of, like, you know, get all these stickers and stuff and get them excited about designing it. Right? So we did all that. And now she gets excited, and she's like, I wanna change my robot. We call it robots. Right? But then when you actually start, you know, you spray the adhesive remover and you're getting rid then the screaming begins.
Scott BennerShe starts going, wait a minute. Yeah. This sticker thing is not gonna help me with the next part. Right. I love the idea that a three year old can be like, wait a second. Probably forgot about this part. No. I mean, listen. I don't know what to tell you about it all. It sucks. And, you know, people are like, well, how am I gonna stop it from having a detrimental effect on my kid later? I'm like, I don't know that you can, but, you know, there's a much more detrimental effect not taking your insulin.
ZachThere you go.
Scott BennerI think a big part of the first couple years is regulating yourself and your expectations for life. Because there's no doubt that, again, like, three months ago, you were like, oh, I have a young family. You know, I've got this little girl. I've got another baby that just got here. This is all great. We're doing terrific. I mean, I could paint you a picture right now, Arden's second birthday, the backyard of our house. We hired a guy to bring a pony. Mhmm. He put the kids on ponies and was, like, walking them in circles, ruining the grass. Didn't even care. Couldn't have possibly cared less walking the ponies in a circle. Just a beautiful experience. Like, I had a son who was maybe god. What was that? 2004. He was only about four years old. Like, 2006. He was six. She was two. There's a pony in my yard. Like, you know what I mean? I think we had the zoo bring animals. I think there was, a snake and a an eagle. I'm not even making that up.
Scott BennerWow. Yeah. It was like a petting zoo back there.
ZachYou're making me feel bad. I got a third birthday party to plan here.
Scott BennerWe just bought the house. We had a yard finally. Like, we were doing this whole this summertime Arden. We even made Arden on purpose so she'd be born in the summer so we could have a summertime birthday party. And, like, I'm not even kidding you.
ZachLike, as a planners.
Scott BennerWe've only planned two things in our life. One of them was getting pregnant in October so that Arden could have a birthday party in our backyard. And then we get the whole thing, and there it is. And I have to tell you, like, I stood back for a second that day, and I thought, oh, man. I did it. Right. I grew up so broken, like, in a family that didn't have any of this. I was like, I put the whole thing together in my mid twenties. Like, I really I did it. You know? Yeah. And, like, a couple weeks later, we're sitting in that hospital. Amazing. Yeah. Yeah. Yeah. And then I don't know. It takes as much time as it takes for you to regulate yourself and understand that, like, nothing in life is promised and that, you know, it was never gonna go exactly the way you thought. It just these things seem really big. Yeah. But the sooner you realize that, like, these are the cards and you still play. And you don't play differently, you gotta play the same way that you were going to before this happened. And that's when it all melts away, and it doesn't seem like that big of a deal.
ZachI think we're getting closer.
Scott BennerYeah. Well, hell, you got plenty of time. You just started. So you're still on your first set of tires in this race. You know what I mean?
ZachThat's right.
Bernstein versus Benner
Scott BennerYeah. Yeah. Yeah. There's a note in here for you about like, you just said, at the end, you wrote Bernstein versus Benner. What did you mean by that when you wrote that down?
ZachWell, you brought it up before in a way. You were talking about why are you talking about low carb. And I think that that there's the happy medium. Right? So when you think about your chicken nugget, which I I forget if this was in bold beginnings or what, where you talked about the chicken nuggets. It's a perfect example because that's where I'm at in diet, in life with a young kid. Right? The dinosaur chicken nuggets. Right? Is that, you know, I think the the reasonable middle ground is probably where we land, which is that you try to offer some low carb options or maybe in between meals do that. But part of that is just I think you don't wanna keep feed the kids all white flour and sugar, which a lot of, you know, young kids end up eating. They eat a lot of goldfish. They eat Annie's gummies or whatever. So Bernstein, I'm sure most of your audience will know, was a guy who basically I don't wanna oversimplify it. I haven't read the book. But he he was diagnosed midlife, then became a doctor, then wrote a book. He lived into his nineties, and he advocated for his book was called the diabetes solution. And what was the solution? It was don't eat carbs. I mean, basically.
Scott BennerIt worked really well for him. Yeah. We're As I can tell.
ZachYou know? But I think your podcast is a little bit more about balance. Right? I don't think you come out and advocate for low carb. You advocate for learning how to bolus. That's why I described it that way, I think. Yeah. I don't I don't wanna put words in your mouth or his.
Scott BennerNo. I mean, listen. I've never read the man's book either, but, like, he lived a hell of a long time. Mhmm. You know, the last handful of years, he was in his eighties, if I'm not mistaken.
ZachRight. 90. I think he got to 90.
Scott Benner90. That's amazing. Like, you know, and for having diabetes for as long as he did. Right. You know, and starting when he started
ZachWithout technology. Right.
Scott BennerYeah. His longevity is astounding. And it's hard to argue. Right? Like, the fewer carbs you take in, the less insulin you're gonna need, the less insulin you use, the less chance you're gonna have at, like, Lowe's. You know, the carbs aren't gonna make high blood sugar. I I think all that makes a thousand percent sense.
ZachFor sure. But it can increase burden too, right, of just being in the world.
Scott BennerYeah. Maybe. Like, I don't know. Like, I don't think it's important to assign, like, what I think about it. What I think is that there are a lot of people out in the world, they have a lot of personalities and a lot of experiences and a lot of access to money or not access to it and health care and other so many differences in people's lives. I thought it would be stupid for me to jump on this podcast and pick a thing and say, do this just like this. Yeah. Because I just don't think you reach that many people that way. And so I thought I had the biggest possibility of reaching the most people by saying, look, I think if you understand how the insulin works and you understand how food impacts you, that you can make decisions that will meaningfully keep your blood sugar more stable. Then then you go ahead and apply that idea to the way you live because I'm not in charge of how you live and I certainly can't change your mind about what you eat. Like, do I think you should be eating a ton of white flour and being at fast food restaurants? And I don't think you should do that at all. But I also think if I said that to you, you'd be like, oh, well, sure. It's easy for you to say, asshole, because you've got your own set of circumstances. I'm trying to pass on to people what I've learned in a way that will be valuable for them, not in a way that is either, like, celebratory because they do it that way or punitive because they don't. I'm just gonna tell you, like, this is what works for me, and I think it could work for you too. Give it a shot if you want to, if you don't want to. I don't wanna say I couldn't care less, but I couldn't care less. Like, do whatever you wanna do. Yeah. You know what I mean? But I think that if you come out and say, eat like this. This is the right way. You'll capture the people who agree with you.
ZachRight.
Scott BennerAnd that's it. But you're not gonna talk anyone else into it. Like, nobody who isn't gonna eat low carb is gonna hear that story. If doctor Bernstein rose from the grave right now and retold his story, people who aren't gonna eat low carb wouldn't go, oh, okay. I'll do it. They'll just go, well, that's nice. I'm glad it worked for you, and I'm not up for it.
ZachWell, the difference is we're making decisions for somebody else right now.
Scott BennerRight? Yeah.
ZachJust just two and a half.
Scott BennerRight. Yeah. I mean, you are a new father. Like, you're in the middle of deciding how you're gonna talk to your kids about food and what you're gonna bring into the house and what's gonna be available and what's not going to be. You hear Jenny talk about it sometimes. Like, her kids don't get food like that. They don't even know it exists, and they don't care. They're fine, but it works for them. She could just as easily have put that into place for kids who were like, hey, lady. I want a Zag Nut bar right now, and I'm gonna scream until I get one. Like, I don't know. She doesn't know either. Like, is it nature? Is it nurture? I'm assuming it's a little of both. You know, how she got to there, how she's wired, how her brain works around it. Like, it's not as easy as just saying I'm gonna do this thing now. Because if that was the case, then I would get on my rowing machine every day and not just when I force myself to do it. Yeah. You know, like, I'm just not wired like that. Mhmm. Could I fix that? I probably could change that for myself, but I don't know how to do that. Or if I want to, to be perfectly honest, like, I don't know, man.
Scott BennerKnow, You I saw a post popped up in front of me recently. I would definitely never say anybody's name. But it's somebody who eats incredibly low carb and has really nice success with it. And, you know, it's it's celebratory post as it absolutely should be. And there's about, I don't know, 700 likes on it. And it would be easy to look at that and say, oh my god. Look. 700 people agree with that. That's all the people. But it's not. My group is full of people who eat the way they eat and, you know, there are people who support them doing that. And I just don't understand, I guess, the desire to make somebody feel badly if they don't do what you do. And I'm not even saying anybody does that. Like, I'm just saying, like, you're gonna figure your way through this, Zach, and it's not up to me how you get through it. I don't even know that it's up to you how you get through it. Like, sometimes I just think it's life and things you run into, things that make sense to you or don't, amount of effort you have available at the end of the day to, you know, make a chicken nugget yourself versus open up the frozen bag of whatever the hell those dinosaurs are. Pretty sure they're not chicken. But, you know and I'm, you know I don't know. Like, I don't want you to feel bad about it. I want you to do as well as you can do. Yeah. And be happy and etcetera. Like, I don't know. Like, I might lose a 100 of those weekends because around Easter, I really do like eating a couple of stale Peeps. You know? Like, I don't know. But, like, you know, when I'm 84 and I can't see my hand in front of my face, I might think, oh, I should've eaten more of those Peeps. I could've got out of here sooner. So, like, I don't I don't know how life's gonna go, man. Nobody does. You know? So doctor Bernstein found something that worked great for him, and it works great for the people he found that agree with him and who jive with that idea. I think that's awesome. I really do. Like, whatever works for you is what I think is awesome. Yeah. Right. No. That was a lot of talking. I'm sorry.
ZachThat's okay. Yeah. I mean, one thing it makes me think is, like, there's this question of people say the less insulin you use, the less chance you have a bad outcomes. Another way of saying the healthier you eat, the healthier you'll be. Right? Because, essentially, if, you know, you're using less insulin, you're probably eating it healthier.
Scott BennerMhmm.
ZachNow there may be some high fat, you know, Atkinsey things that people have to say about the cardiovascular system. But is it the insulin, or is it just like a bad diet? It's a bad diet. I'm still trying to figure that out too. Don't know what the reality is there. But you're right. I mean, at the end of the day, there's trade offs on, like, mental health and disease burden and all of that. So I definitely hear what you're saying.
Whole Foods Philosophy
Scott BennerYeah. And if you want the opinion of somebody that barely got through high school, didn't go through college, and has absolutely no training, I think that you should eat whole foods as much as you can.
ZachRight. Yeah. The the whole state of the outside of the grocery store.
Scott BennerYeah. That makes sense to me. Right? Like, I've said it a number of ways in the podcast. Like, when I was struggling with my health and my weight and all that stuff, I didn't know what I was doing. I say this all the time. Happy to tell you again. Grew up like a trash person. You know, like, nobody made good food for me. Nobody even understood what good food was. And as an adult, when I was like, oh, I have these kids, and I don't want them to be in my situation.
ZachMhmm.
Scott BennerI don't know what to do. So I would just follow people around the grocery store that look healthy. I'd be like, what are they buying? It doesn't take long for you to follow them around to realize they don't go up the potato chip aisle.
ZachRight.
Scott BennerLike, that's just pretty simple. All those healthy looking people that I saw in the grocery store, I look in their cart, there's no potato chips in their cart. Yeah. I don't see soda in their cart. They make decisions like that, or maybe they're not even decisions. Maybe it's just how they were brought up or whatever. And I say to myself, okay. Well, I'll try to avoid that stuff for my kids. And I'll tell you right now, my son all the time sits down with a glass of water, and I'm so proud every time I see him do it because I wouldn't drink water if you paid me. I hate it. Yeah. I don't even know why. Like, it it tastes like water. I think that's the worst part. But at the same time, I'm fine with it. It's just when I sit down, like, in a relaxing situation, it would not occur to me to do it, but my kids do it all the time. You know? They eat beans and chicken and the stuff that I basically told them to eat when they were little. I was in charge of telling them that. Just the way I grew up eating hamburger helper and all that garbage my mom and dad gave me. But my parents were broke, and it's probably the best they could do, but it still informed how I ate. And so, you know, I had more luck guiding my children than I did changing for myself, to be perfectly honest. You know? Because I just it felt that important at the time. There's still places it slips through the cracks. Like, my wife definitely has, like, a make sure there's snacks around the house so everybody feels loved mentality.
ZachMhmm.
Scott BennerAnd that's psychological. That's got nothing to do with food. You know what I mean? So, like, I don't know, man. Like, you got little kids. Like, you the world's your oyster right now. You'd probably get them to do whatever you want.
ZachYou're making it sound too easy.
Scott BennerThat kid's gonna go to college and eat pizza for goddamn sure. I don't care what you feed her.
ZachOh my god. Some of those episodes where you talked about the food is of restaurant quality. As Art is discovering the cafeteria. That was insightful for me, just the way you described that.
Scott BennerYeah. College food is trash.
ZachWell, just the idea that you don't know what's going in at the restaurant, and a bowl of this or a bowl of that is not the same in your house or at the restaurant. Yeah. And that's a general philosophy that you can it helps you learn about what goes into a dish and what that means, and slowly you learn why the goldfish are so hard to bolus for.
Scott BennerMhmm.
ZachI mean, you learn something about health in general, I think, through diabetes.
Scott BennerYou leave the chilies after having a chicken finger and a fry, and you're like, I gotta go to the bathroom. I got it right now. Out of the way. Is it the grease in the fryer? Is it the grated chicken? Is it what's in the breading? Is it like I don't know. No idea. I don't mean to pick on chilies either. I hear it's a celebration of food. But, like, you know, like, that kind of stuff. Like, there's so much fat and sugar and salt and everything so that, like, the food doesn't even have to be good. Like, those jojas it up so much for you. You'll leave there. You're like, this was awesome.
Scott BennerMhmm. I see people do that all the time. There's a chain restaurant that sells steaks.
ZachTexas Roadhouse?
Scott BennerThat's the one. You couldn't drag me in there if you chained me to a car and pulled me in there.
ZachIt's the most successful restaurant in America. Right?
Scott BennerI swear to you, I've had a meal there maybe twice in my life, and each time I've left, I felt like I got a a telegram from my body. It's gone beep beep beep beep beep beep. What it's saying is, like, please don't ever do that again.
ZachA lot of butter.
Scott BennerYeah. Yeah. Maybe that's just it. Like, a lot of fat or whatever. Like, it's possible you don't even know if it's a good steak. It's just so drenched in whatever that it hits all your pleasure centers, and you go for right on. This was awesome. So I don't know, man. Like, good luck to you. You're gonna have more kids. May I suggest not?
ZachI don't I think we're done. I mean, look.
Scott BennerYou're not on a roll, if you know what I mean. Like
ZachI might fall over if we have another one. It's a lot of work, man.
Back Pain and Stress
Scott BennerMy last question for you is your back. What's wrong with your back?
ZachI worked at a driving range in high school, and I have a pretty high swing speed. And if you know anything about most driving ranges, they have a sort of a little rubber mat with, like, fake grass on it, and then underneath that's concrete pad.
Scott BennerMhmm.
ZachSo imagine, you know, you're working the cash register, but when it's not that busy, you're hitting, like, 300 golf balls a day as your spine is developing from a adolescent into an adult, you know, from the ages of 14 to 18. While the impact of a shaft going a 100 miles an hour plus into a thin rubber mat and concrete is intense, I guess, I'll say. I think that's probably what caused my disc to herniate at quite a young age. And, you know, what happens when you herniate a disc is the sort of gelatinous substance inside of it squeezes out, presses on your nerve, causes all kind of leg pain and numbness. And then over time, that gelatinous stuff just kind of dries up and goes away, and your vertebrae are essentially sitting on top of each other. That's called degenerative disc disease.
Scott BennerMhmm.
ZachSo I have, like, three levels that are basically collapsed like that at this point, but I still play golf.
Scott BennerHas it been worse over the last few months?
ZachYeah. It kinda ratcheted up a little bit, you know, but at wintertime plus diabetes stress didn't help. Carrying around a baby, carrying around a bowling ball. You know?
Scott BennerI don't say a lot of hippie stuff on the podcast. Yeah. But here you go. Okay. Healing Back Pain by John Sarno. It's a book? Yeah. Just read it. Okay. I haven't heard of that one. It fundamentally changed my life. Not kidding. Yeah. But it's more about, like, stress and how it manifests in your back sometimes.
ZachIs the stress coming through the microphone, Scott?
Scott BennerNo. I know you, Zach. Don't worry. I've been you and I know you and I know where we're going here. I'm gonna tell you, like, when I read that book and it made sense to me, I really did alleviate a lot of my back pain. And I think it was little stats in there, like, prior to I'm gonna get all this wrong, but, like, prior to World War two, the instance of men complaining about back pain was, like, nonexistent. Like, so when we were all out there busy, you know, fighting Jerry or whatever was going on
ZachFor our lives, guys.
Scott BennerYeah. Yeah. Yeah. Nobody was worried if their back hurt. And then you brought them home and gave them a quarter of an acre and some grass and free time, and people were suddenly more aware of themselves and their stress build up. And another way he says it is that if you went to work and had a horrible day at work and came home with a headache, you wouldn't come home and tell people your brain is broken. But if you go to work or say your kid's diagnosed with type one diabetes and your back starts hurting, you tell people right now, I've slipped this. I have a bad back. And he said if you I forget what the number is. If you take, like, a thousand adults who've never complained of back pain and give them an MRI, a surprising number of them have the disc stuff that you were talking about. Yeah. It was just I don't know. Those things made sense to me in the time. I mean, I can save you the $20 if you want, although I think it's worth reading.
ZachHow many ohms do I have to say to get rid of this?
Scott BennerWell, what I used to say quietly in my own mind was my back's not broken. I'm okay. Alright. Yeah. And then it just kinda got better. Then the rest of it was losing weight. I lost weight and that's it. My back I feel badly saying this because the listeners about five years ago bought me the chair I'm sitting in because my back hurts so badly. Oh, wow. I complained about it on the podcast one time, and I decided, like, I'll spend more money on a chair. And I didn't know what to do, and they were expensive. So I went online. I was like, hey, guys. Can you tell me the difference between these chairs? Does anybody use these? And before I knew it, I woke up the next day, there was, like, $2,500 people had sent me to buy a chair with, like, in total.
ZachOh my god.
Scott BennerAnd so I sit in a really great steel case chair. It's awesome, by the way. But to all those people who did that, my back doesn't hurt anymore. It's not because of the chair, so I'm so sorry. But I do appreciate the chair still. It's the only thing I've ever taken from people is my chair, and I just losing the weight made my back not hurt anymore.
GLP-1 Medications
ZachYeah. Yeah. I actually it's funny. Leading up to the diabetes the year before, had been on GLP ones, which didn't work well for me, but I won't go into that tangent. And my wife, because of the rounds of IVF to conceive our daughters, had been, you know, for the first time, injecting herself with various things.
Scott BennerYeah.
ZachThat's just part of what that process is. So the one thing we did have coming into diabetes is experience with needles. Mhmm. Mhmm. So it was
Scott BennerWait. Listen. You're already in the ninety minute range. So why didn't GLP work for you?
ZachHere's what I found. Because I had less appetite, I eventually would get hungry at, like, 03:00.
Scott BennerMhmm.
ZachAnd then I would just eat whatever crap was around the house. And my wife was pregnant, so there was a lot of crap around the house.
Scott BennerIf you would have just eaten chicken in that moment, Zach, you would have lost weight.
ZachYeah. It's like trying to get my daughter to eat chicken right now.
Scott BennerWhat dose were you up to?
ZachTwo and a half. Like a child
Scott Bennerof what? Ozempic?
ZachGeneric semaglutide. I was going through that company, Roe, so it's probably coming from god knows where. You know what happened with all that. Right? So during COVID, there was a shortage of supply due to supply chain issues. Yeah. And so they changed the law, and all these companies just started making generic semaglutide, which is Ozempic. Yeah.
Scott BennerYeah. Yeah.
ZachAnd so and it was way less expensive.
Scott BennerDo you have weight to lose still?
ZachYeah. You know, it's funny. So I'm, like, six two. Mhmm. If I stepped on a scale right now, I'd probably say, like, two fifty five or something. If you looked at me because I'm taller, I don't think most people would say, like, I was obviously obese, but I'm overweight for sure.
Scott BennerYeah. Zach, I'm gonna tell you right now, a little zepbound
ZachI've heard it's better.
Scott Benner40 pounds off you in the next year. Bet your back doesn't hurt as much anymore. Yeah. Maybe. Yeah.
Scott BennerOh, man. Reminds me today's my day to inject. I'm so happy now. I just realized I'm gonna be alive for another week.
ZachOne more weekend.
Scott BennerOne more weekend? Yeah. 1,300. Are you kidding me? What in the hell, Zach? Oh my god. Alright. Is there anything that we didn't talk about that we should have? Anything that you want to bring up that I I talked around and wouldn't let you get to?
ZachNo. This was great. I hope you can weave together, something that's of interest to the listeners and just thanks again for doing what you do and then for allowing me to be a part of it.
Scott BennerOh, I was like, it's my pleasure. But please, if you think there's any weaving that goes on, Rob's gonna blur out where you said, said, two times I just said, here plus the one more, then people are getting it. We're gonna stick some ads on it, and it's gonna go up on the Internet.
ZachVery good. Sounds good to me.
Scott BennerWe don't chop up the conversations. We let them happen. Thank you very much, man. It's really great. Hold on one second for me. Okay? Yep.
Closing and Sponsors
Scott BennerTouched by Type one sponsored this episode of the Juice Box podcast. Check them out at touchedbytype1.org on Instagram and Facebook. Give them a follow. Go check out what they're doing. They are helping people with type one diabetes in ways you just can't imagine. Are you tired of getting a rash from your CGM adhesive? Give the Eversense three sixty five a try. Eversense c g m dot com slash juice box. Beautiful silicone that they use. It changes every day. Keeps it fresh. Not only that, you only have to change the sensor once a year. So, I mean, that's better.
Scott BennerToday's episode of the Juice Box podcast was sponsored by the new Tandem Mobi system and Control IQ Plus technology. Learn more and get started today at tandemdiabetes.com/juicebox. Check it out. Okay. Well, here we are at the end of the episode. You're still with me? Thank you. I really do appreciate that. What else could you do for me? Why don't you tell a friend about the show or leave a five star review? Maybe you could make sure you're following or subscribe in your podcast app, go to YouTube and follow me or Instagram, TikTok. Oh, gosh. Here's one. Make sure you're following the podcast in the private Facebook group as well as the public Facebook page. You don't wanna miss please, do you not know about the private group? You have to join the private group. As of this recording, it has 74,000 members. They're active talking about diabetes. Whatever you need to know, there's a conversation happening in there right now. And I'm there all the time. Tag me. I'll say hi. Hey. Do you need support? I have some stuff for you.
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