#1845 Live Tech Support
Scott helps Danette, an overwhelmed mother managing her daughter's type 1 diabetes. He advises going back to basics, resetting basal insulin , and prioritizing sleep to combat burnout.
Key Takeaways
- When diabetes management feels overwhelming and chaotic, go back to the absolute basics by simplifying your approach and focusing first on foundational settings rather than complex variables.
- Accurate basal insulin is critical; if basal rates are incorrectly set (often too low), meal boluses and correction factors will struggle to work effectively, leading to unpredictable blood sugars.
- Taking a "pump break" and returning to Multiple Daily Injections (MDI) can be a valuable tool to reset expectations and isolate basal needs without algorithmic interference.
- Caregiver burnout and a lack of sleep drastically impact your ability to make clear, rational decisions regarding diabetes management, often leading to over-correcting or over-worrying.
- Avoid "chasing ghosts"—such as constantly blaming bad insulin or cannula issues—before confirming that your basic insulin-to-carb ratios and basal rates are properly dialed in.
Resources Mentioned
Introduction & Support Resources
Scott Benner Here we are back together again, friends, for another episode of the Juice Box podcast.
Danette My name is Danette, and I'm from the Midwest.
Scott Benner Hey. Do you need support? I have some stuff for you. It's all free. Juiceboxpodcast.com. Click on support in the menu. Let's see what you get there. A one c and blood glucose calculator. People love that. That's actually, I think, the most popular page on the website some months. A list of great endocrinologists from listeners. That's from all over the country. There's a link to the private Facebook group, to the Circle community, and we have a a fantastic thing there, American Sign Language. There's a great sign language interpreter who did the entire bold beginning series in ASL. So if you know anybody who would benefit from that, please send them that way. Just go to juiceboxpodcast.com and click on support. While you're there, check out the guides, like the pre bolusing guide, fat and protein insulin calculator, oh gosh, thyroid, GLP, caregiver burnout. You should go to the website. Click around a little bit on those menus. It really there's a lot more there than you think. 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 Benner The show you're about to listen to is sponsored 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. Eversensecgm.com/juicebox.
Scott Benner Today's episode is also sponsored by the Tandem Mobi system, which is powered by Tandem's newest algorithm, Control IQ Plus technology. Tandem Mobi has a predictive algorithm that helps prevent highs and lows and is now available for ages two and up. Learn more and get started today at tandemdiabetes.com/juicebox. The podcast is also sponsored today by US Med. Usmed.com/juicebox.
Scott Benner You can get your diabetes supplies from the same place that we do. And I'm talking Dexcom, Libre, Omnipod, Tandem, and so much more. Usmed.com/juicebox or call (888) 721-1514.
Danette's Daughter's Diagnosis Story
Danette My name is Danette, and I'm from the Midwest.
Scott Benner Danette, that was awesome. Thank you. Some people struggle to introduce themselves. Danette, you have diabetes? You have a child with type one?
Danette I have a child. My daughter, she's seven and a half. She was diagnosed five years ago on 02/01/2021, and I am also the mother to a son who's 10. They're almost three years apart to the day.
Scott Benner Wow. Wow. Wow. Wow. Do you have any type one or other autoimmune in your family or any reason to think that maybe you'd have a child with diabetes one day?
Danette No. The doctor said, quote, it has to start somewhere.
Scott Benner What an upbeat thought.
Danette I've got type two on my side of the family. My husband has some type two on his, but no type one that we know of. No other autoimmune that we can think of.
Scott Benner Really? No celiac or thyroid or anything like that floating around?
Danette No. Not at all.
Scott Benner I find a lot of people have thyroid and don't tell anybody about it. It's an interesting thing too. Does your family talk about health? Was it a thing you feel like you would know about if it existed?
Danette Yes and no. I think we hear about health problems after the fact. Like, seventeen years ago, my mom had a very massive heart attack, and it was kinda like brought all the family together. But up until that point, didn't really talk about health. It was like, yeah, my type two is bad. My health was bad. I didn't take my medication. Oops. I had a heart attack, that kind of thing. But nothing really at the forefront, like preventative, keeping on top of things. I think now that, you know, our parents or grandparents, they wanna be around, and so now it's more of a focus. But back then, it wasn't really.
Scott Benner Oops. I had a heart attack would be a great episode, Nave, if you would have just said it a little later in the episode. So okay. I'm just gonna ask a little further. Just like vitiligo, psoriasis, anything even, like, inflammation related, like, just terrible seasonal allergies or anything like that?
Danette Nope.
Scott Benner How about that? Okay. Did she have a virus previous to the diagnosis? I mean, she's two and a half. Right?
Danette You know, not that I could think of. You know, I kinda look back at the pictures and you see, like, wow. You could really tell that she was getting sick.
Scott Benner Mhmm.
Danette Compared to my son, she was always kind of a chunker. So it was like she was starting to lean out. We thought, oh, she's going through a growth spurt. You know, that's just normal. Oh, she's wetting through her diapers because we have a bad batch of diapers, and so we were getting the overnights and that kind of thing. And then it just got progressively worse. I don't think she was sick before. Nothing that we could pinpoint. I mean, it was during COVID. We avoided that. They were still in daycare. Didn't really get sick.
Scott Benner No hand, foot, mouth?
Danette No. No. She actually got hand, foot, and mouth after she had diabetes. Oh. We had a little stint in the hospital for an overnight because of ketones and things like that. And when I was changing her diaper, I noticed the rash on her bottom. And then she was saying that her applesauce tasted spicy. And so when I looked at her tongue, like, she had the dots on it, but that was after her diagnosis.
Scott Benner Spicy applesauce. Yeah. I don't think that would be good. Maybe it would be. I don't know. I don't wanna think about it right now because I'm hungry. I haven't eaten yet today. I was like, oh, applesauce. I'm like a child. I love applesauce. My goodness. Okay. So she's diagnosed. You notice her leaning out. You go to, like, a family clinician. Do you end up at a hospital? What's the process of figuring it out and getting moving?
Danette So how we figured it out was both of my children were cursed early on with they just stopped napping around, like, 18, two years old. And so she'd been really lethargic. She was drinking a lot of water, but we didn't really put two and two together. And I had gone away on a day trip with some friends, and my husband had reported that my daughter was very cranky and lethargic, like, just not feeling herself. And he chalked that up to I was gone all day. Mom wasn't home. So this was on a Saturday. On Sunday, she took, like, two or three naps, which was unusual. And she was very clingy. She was eating fine. But then on Monday, I was working from home at the time, she just didn't seem right. She looked flushed. She'd gone down for multiple naps, and I told my husband, I said, if she's not feeling better by tomorrow, I'm gonna take her to our family GP. And so I went up to change her diaper, and when I laid her on the changing table, her eyes kind of rolled back in the back of her head like she was gonna just, like, pass out. And so I told him, I said, I think I should probably take her to an ER. So there's one pretty close by our house, and we took her there. And she was very disengaged. She wasn't looking around. She wasn't excited to be in the car. And so when we checked in, you know, the nurses are giving her the bracelet and getting my questionnaire completed, and she just looked very distant. And so I still had no idea what was wrong with her. But then when we got back to the room, the doctor comes in and says, well, we're gonna do some blood work, and we're gonna do urinalysis, but I'm pretty sure she has diabetes.
Scott Benner Now he knew by looking at her, or do we smell her breath maybe?
Danette I don't recall the ketone smell. I don't recall any, like, Kussmaul respirations. She was just so lethargic, and I don't know. He just knew.
Scott Benner Okay.
Danette And that was just kind of, like, a blow. I had no idea, like, how he could have guessed it, but he's like, we see this all the time. We're just gonna get you admitted, and you'll probably be in the hospital a couple days, we'll go from there.
Scott Benner Wow.
Danette So he seemed to know right away.
Scott Benner Yeah. Prior to him saying that, you just thought, what, she's sick? She had a cold or the flu? Or
Danette No idea. She had never really been sick before. Not like that.
Scott Benner But she was your second. Right? So you had one already?
Danette Yeah.
Scott Benner Yes. So you'd even been through a little bit of that. You not even nervous at the hospital? Were you just more confused?
Danette It was, like, really confused. Like, how could this be happening? You know, she's so little. It was just kinda out of the blue, like, not even on the radar.
Scott Benner I hear you. Okay. Is it more of a shock to you or your husband? Who do you think took it harder? Do you think somebody handled it better than anybody else?
Danette I think we were both kinda taken aback by it. I think early on, my husband was just like, we gotta get through this, and he kind of compartmentalized it and never really kinda dealt with the fact that she had diabetes. It was like in the middle of COVID and all this crazy stuff. Right? Mhmm. Until he'll even admit, like, he had never really processed the fact that she had diabetes, so I could think it hits him harder sometimes thinking about it. But, yeah, it was just completely off the radar.
Scott Benner During COVID, meaning, like, during lockdown portion of it?
Danette So we were about a year in because we locked down in, what, February or March 2020, and then she got diagnosed in 2021.
Scott Benner Okay.
Danette So we were still working from home. So I guess in that regard, like, our companies hadn't really
Scott Benner We were in the part of COVID where we were all like, I guess we'll just live in our houses for the rest of our lives. Yeah.
Danette Yeah. Pretty much.
Scott Benner Right. Right. I gotcha. Alright. So that part.
Early Struggles and the Value of a CGM
Scott Benner What did they start you off with? Technology? Was it harder to get educated? You know, what did that extra layer of separation create? Do you think it ended up being good or bad in the long run?
Danette Hard to say. I it was just a complete shock. You know, they told us if you count your carbs and you just give insulin, it's gonna be fine. Right? And so I'm like, oh, this is, the best disease to have because I can count. Right? Perfect. Been a nightmare since then. But, yeah, we left with Lantus and Chemalog with syringes. I think we were on a the quick pen.
Scott Benner Mhmm.
Danette Left with a ton of lancets and finger sticks and things like that. I was, like, such in a daze. I didn't even really understand the benefit of having a CGM, so I was against her having something on her body, which at this point, I think that we should have done that from day one. Uh-huh. You know? But there was no one telling me, well, this is why you need it. This is why it's important. So from the very get go, was kinda like sink or swim, figure it out yourself, which is a very difficult position to be in.
Scott Benner Yeah. I have to tell you, I'm still laughing at your assertion that while I can count, this is gonna be a breeze. Like, that really still has me amused.
Danette Oh, yeah.
Scott Benner Oh, diabetes about counting. I got ten fingers. I got ten toes. I know my gazinthus. This is gonna be no problem at all. And then immediately didn't pan out that way.
Danette Oh, no.
Scott Benner Yeah. Yeah. Still hasn't, I imagine. Yeah. What an interesting, like, first reaction. I love that. I don't know why that just that tickled me. I'm sure it didn't tickle you when you realized that none of that worked out. But so why didn't you want the CGM initially?
Danette I think it was just hard to see what I I don't know. Like, they just came in. They handed me a pamphlet. They said, take a look at this. We can give you a sample, and then they basically walked out. No one said, this is the value. You won't have to do these finger sticks. You'll have data at your fingertips. So that along with the packet of, like, you know, we could apply for some kind of financial aid to begin with because she was diagnosed to get some of the hospital covered, and it was just so much information at once
Scott Benner Yeah.
Danette That there was no one there to say, this is why you need this. This is why it's important.
Scott Benner Do you think that if it would have gotten presented to you differently, you would have had the bandwidth to even think about it or is no way to know?
Danette Oh, I probably would have. I think so.
Scott Benner Okay. Well, then how did you find out about it eventually? How did you eventually bump into the idea that, oh, that thing they mentioned, I should look at that again?
Danette So my sister-in-law, not by blood, she has a lot of people in her family of type one. And she was like, Dee, you gotta get this CGM. Like, this is gonna be very helpful. So having someone in my family say, this is why it's important. And then we didn't have a CGM, I'm gonna say for about two months. Mhmm. And then we were still doing finger sticks randomly before meals and things like that. And one day, we were about to have dinner, and my daughter just looked very tired, like, uncharacteristic. And I did a finger stick, and she was, like, 40. Mhmm. And I was like, okay. We need data. We need to know when this is gonna happen because we're just getting those snapshots. It's not really giving us the big picture.
Scott Benner Yeah.
Danette I think that was the point where I kinda realized the utility of why we needed it.
Scott Benner Okay. Well, I'm a big fan. So I Yeah. Yeah. I think if you're using insulin, you should be wearing one if it is all possible. Did you do diabetes long enough without one to feel the benefit, or was it really just that one time situation that made you think, oh, this is scary. I don't wanna do this again. I'm gonna grab the thing. Do you know what I mean? Like, if somebody asked you to explain to them what's it like to manage without it versus what's it like to manage with it, do you think you have experience without it to talk about it?
Danette No. I think at that point, we were still kinda in a daze. Right? We didn't know what was going on between meals, finger sticks in the middle of the night, high all the time, low sometimes. I went back through some of our information. I was looking at, you know, those little handwritten sheets they give you in the hospital, like log your dose, log your carbs, log your blood sugar before and after meals. Mhmm. It was just all over the place, and we just didn't know what to do with that information.
Scott Benner So you're just writing these random numbers down, but not having any actionable idea of what to do next now that you saw the numbers. Yeah. Mhmm. I mean, I had an incredibly difficult time trying to make sense of all those random numbers too. You know? The CGM is just a I mean, to say it's a game changer is just not enough. You know? It's not an effusive enough of a description of what it does for you if you're using insulin, and it just opens the whole thing up. How quickly did you I mean, I obviously see the benefit of the CGM pretty quickly, but how quickly after that does it actually translate into better outcomes, or does it not? Does something else need to happen?
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Frustrations with Pump Therapy and Outcomes
Danette Outcomes. I think that's why we're talking today. So when I look back at the numbers, right, it was just all over the place. I mean, high blood sugars and, of course, we're new a newly diagnosed family. We don't know what to expect. Our endocrinologist is saying, oh, you're doing fine. This is great. You know, better high than low, that kind of thing. Mhmm. The outcomes weren't where we I wouldn't say where we expected because we had no expectation. Right? So it's, oh, just dose her after her meals. And when I had expressed concern that the blood sugars were very high, then the endocrinologist says, well, dose before, but, you know, part of the risk of that is if she doesn't eat, then, you know, what are you gonna feed her? So putting fear in our mind right away.
Scott Benner Yeah.
Danette So it became, like, the what ifs, like, started almost immediately. So I would say that we struggle with the outcomes. We struggled with the feedback that we're getting, the advice that we were getting. Like, Oh, you're doing fine. A1c can be this high. You know, there's really no risk right now to having these terrible blood sugars. And when I'm not happy with them, you're touching the pump too much. You want to control this disease too much, and it's not controllable. You know, she's a child, that kind of thing.
Scott Benner Okay. Yeah. So tell people how you and I come together today.
Danette Do you want me to cry an hour later?
Scott Benner No. I mean, whenever you want is fine. But I didn't know you're gonna cry. But no. But Explain how we got here and why we're recording.
Scott Benner Danette, are you there?
Danette I am.
Scott Benner Oh, honey, are you okay? I'm sorry.
Danette No. It's fine.
Scott Benner Take your time.
Danette It's funny. My husband's like, you know, you can't record this at work. You have to come home home for this.
Scott Benner Are you at work crying right now?
Danette I am, but I'm in, like, a maternity room, so no one's gonna come in
Scott Benner here. Okay. So you hear a lady crying in the maternity room, no one's going in. You're completely safe. What's going on?
Danette I'm just really frustrated about the level of care that I'm providing to my daughter.
Scott Benner Okay. Alright.
Danette You know, I feel like I am a right brain person. We were kinda hesitant about a pump to begin with because it's like she was so little, and just the idea of something on her was hard. But I mentioned before how she had a hand, foot, and mouth, and we went to the doctor, and we were, you know, triage in the ER. And one of the nurses came in, and, like, she told me that we really needed to get on a pump and that she was a type one diabetic. And she says, I'm a nurse. I have three children. I have a great life. I have a strenuous job, and my diabetes doesn't prevent me from doing anything.
Scott Benner Mhmm.
Danette And so that kind of set me up on our pump journey, and I feel like everything we've tried, we've never gotten good outcomes.
Scott Benner Okay.
Danette We struggle with and when I say terrible time and range, I'm talking, like, 50%, you know, blood sugars averaging in the high one eighties. And children's hospital, they just say, oh, you're doing great. You know? You need to focus on your sleep. You need to be present for your child. And it's hard to do that. And I feel like we've had a lot of, like, insane obstacles that you know, I I listen to the podcast, like, religiously. It's, like, in the background constantly just trying to glean any kind of help. Yeah. And I feel like I know all the steps that we need to do, but they just, for some reason, don't translate.
Scott Benner Okay. So let's first of all, I want people to know that you sent an email, and I have a lot of experience receiving emails from people, and you can kind of see when a return email isn't kind of enough. Does that make sense? Like, was nothing you sent me in that email could I have properly responded to, if that makes any sense. What is it? I said, hey. Do you wanna jump on the podcast and we can just talk it through? Right? Is that how I did that? Yes.
Scott Benner Okay. I have to be honest. I think to do that more often than I actually do it, but I don't know exactly what it was about your note that made me think we should. But
Danette I think it just oozed desperation.
Scott Benner It oozed desperation. So let's go over a couple of things that your health care providers are telling you that is valuable even though it's not it doesn't feel supportive at the moment. Right? But they're not wrong that you gotta get some sleep because it's gonna make you crazy and you're not gonna be able to think. And but to say, don't worry about this a one c. Don't worry about this blood sugar when you're worried about it is not valuable at all. You're not gonna just stop worrying about it. It's impactful to you. I think you're right, by the way, to be concerned about it. I also think that there's a tiny bit of right with them where the world's not gonna blow up if it takes you another month to figure this out or something like that. But you're probably imagining it never gets straight, and it's five years from now and you're still doing this because it's already been five years. Right?
Danette Yeah.
Scott Benner Yeah. So I think I understand about where you're at. So let me start slowly. You have a CGM. Is that right?
Danette Yes.
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Danette So we started out on the Omnipod, I think, probably about six or eight months in. Never really had a lot of success with it, but I'm, like, trying to force the fit because, you know, everyone on the podcast is using Omnipod. Everyone in the and I know that's a generalization. A lot of people on the Facebook group are using Omnipod, and then you can tailor the base. Well, you can do all these things. And for a while, for us, it was more of a way to stop doing so many shots. Right?
Scott Benner Yeah.
Danette So we did the Omnipod, and it was just a real struggle. And so then when the Omnipod five came out, I was very adamant about wanting to get on that to kind of relieve some of my overnight stressors. And our provider hit or miss. I mean, he was kinda, like, on the verge of retirement, so he had flat out told me that he didn't think pump therapy was a feasible option for a child because, you know, they're too active. They get bumped off. You get the same outcomes as MDI. So no support there.
Scott Benner I'm gonna stop you for second. Where do you live? Not not exactly, but, like, how come everybody's all shucks in you all the time?
Danette Exactly. I don't know.
Scott Benner Okay. Okay.
Danette So I have since changed my attitude. Now I'm a more, you know, you work for me and this is what I want. Mhmm. But now we kinda have I wouldn't say friction when I go. Probably. I mean, they probably can't stand to see me, actually.
Scott Benner I wouldn't say friction, but I think they hate me.
Danette Pretty much. They basically handed me off to a new nurse practitioner because I disagreed so much with the other one that we saw. Like, I flat out told her wholeheartedly, I do not agree with your recommendations. And, yeah, I think they're just used to people maybe having better outcomes and who don't struggle as much, who just, like, go to the appointments and get their a one c and go on, and that's it.
Scott Benner Why do you assume the other people are having better outcomes? Why don't you assume that the other people are having middling outcomes and they're just agreeing with the doctor and not paying attention to it after that?
Danette Could be.
Scott Benner Yeah. Yeah. Don't be hard on yourself
Danette Yeah.
Scott Benner There. You're making a hell of a leap there that everybody's doing well but you. Mhmm. You know? I would imagine if I had to guess, I'd imagine that everybody's been given, like, oh, you're doing great. Get some sleep. You know, that kind of, like, homespun wisdom thing. And they're all just going, okay. Well, then she said I'm doing good. So I'm good, and then I'm not gonna think about it anymore.
Danette I think
Scott Benner you're Mhmm. You're maybe in that situation where you're the only one making sense, and you're being left to feel like you're the crazy one.
Danette Yeah.
Scott Benner Yeah. Right? Yeah. And it's probably making you crazy. So we're gonna Yeah. Try to avoid that. Okay. So I'm sorry. So you have Omnipod five right now?
Danette So we were on the Omnipod five. We did that for about, let's say, a year. I can't remember. It was a while. And it was just not working out. Like, we couldn't get the settings right. My daughter was having a lot of lows because it would kick out too much insulin in auto mode. So then we were having to do manual during the day, auto at night, making all these adjustments, and she started to get really bad reactions to the adhesive. I was constantly calling in pods because they would just stop working after twenty four to thirty six hours. My daughter was having a lot of swelling at the sites, pus in the cannula. It was interrupting the insulin delivery and then, you know, leading to the higher blood sugars. So I was very adamant against a tubed pump, but last June, we kinda finally hit our limit. And I was like, you know what? Let's just try the tandem Mobi. It's small, and we'll just deal with it. We were on that for a while, and the outcomes were a little bit better. We were starting to see improvement. Then we started having this weird thing where my daughter was getting a lot of air in her tubing, and no one could figure out why. We got the pump replaced, and she kept having these air bubbles, like, near the pump site. So it wasn't just after a couple days, yes, you get air in the cartridge and that travels its way down. It was like we were constantly flushing the tubing and constantly having air, and no one could figure out why. So we also kind of had a little bit of a butting heads with the nurses at school because they would just dose her, and then she would be three hundred, and they would just continue to dose. And I was like, well, I picked her up early today, and I checked her tubing, and she had air. And they're like, well, there was no air when we checked. I'm like, okay. I'm not saying anything about when you checked it, but when I did, there was air. And so we just got to the point where it's like, okay. At school, we can't control our numbers. We just need to go back to MDI. I guess, start from scratch and try to get the basics down.
Scott Benner Okay.
Danette So we've gone through, like, all of the difference not all of them, a lot of different options. Right now, we're trying to explore the twist pump, but it's not covered by my insurance. I found this out yesterday, so we're trying to do an appeal Just because we're losing a lot of freedom with MDI, my daughter, she would send me pictures from the bus. Like, hey. I wanna eat this piece of candy. This is how many carbs it is, and we would walk through the app together about how to dose herself when she was on the Mobi. So we've tried lots of different things, but we've never had steady, stable, predictable numbers.
Analyzing the Numbers: Basal vs. Bolus
Scott Benner My guess is is that either you are doing something, like, egregiously not right and that you're unaware of, or her body is somehow not conducive to the cannula? Is it possible she's allergic to the cannula material? Is it you know what I mean? Like because you're a person who's paying a lot of attention.
Danette Right.
Scott Benner And I hear your frustration, and you're not getting outcomes even close to the amount of effort you're putting in. Is that about how it feels? Yes. Okay. And what's her a one c right now?
Danette It's 6.9.
Scott Benner Okay. And her time in range is about 50%, you're saying? Ish?
Danette Well, yeah, the last week has been hard because so, you know, I am a religious listener, and I hear all the time about how you say, you know, people just look for ghosts. And, like, I see ghosts, like, legitimately.
Scott Benner All the time.
Danette Yeah. Or when you say people like, oh, well, the insulin went bad. It had it couldn't be the insulin. You know? So last week, when we would decide to go MDI to kinda get things under control, we were gonna use spring break as, like, a baseline.
Scott Benner Mhmm.
Danette Well, she gets a near infection, and she gets on antibiotics, and we switch to an insulin pen. And her sugars are completely unmanageable. I mean, like, ridiculous. I'm giving her so much insulin. Now I'm not a fan of big boluses because I feel like I can't trust my own data that I have from any of her systems. But one day, I was like, you know what? We've got glucagon, and if I have to use it, I'm gonna use it. And for one morning on breakfast, I gave her seven units of insulin to cover breakfast and her antibiotic. Her normal dose is about two and a half to three units. That was a big step for me.
Scott Benner Yeah.
Danette And I'm thinking, okay. We're just gonna do it, and she still went to three 100. And so I'm crying all day. I send you my crazy schizophrenic email, and I said, you know what? I'm just gonna open a vial of insulin and give her a shot with a syringe. And that was the first time in a week that with any predictable forum, we got movement in her blood sugar. I'm like, are you kidding me? Did I legitimately have bad insulin in this pen that I've been using for a week with no relief whatsoever? But, yeah, it just seems weird. Like and then another thing I think about you saying is, like, oh, people aren't brittle diabetics. You just don't know how to use insulin. Like, is she the brittle diabetic? Like, is she the the unicorn Well if you will.
Scott Benner Yeah. So let's reset your expectations a tiny bit for a second, though. A six nine a one c is good.
Danette Okay.
Scott Benner Yeah. Is she getting low a lot?
Danette Okay. So the way I think about it, I'm not really thinking in terms of a one c. Right? Because if you see these graphs, the CGM data that is, like, 300 or two fifty for hours and hours and hours.
Scott Benner Yeah. We don't
Danette want that.
Scott Benner Like Yeah. Right.
Danette Me, it's like, okay. What are her lows? Because, like, my GMI or whatever on the Dexcom is always higher than what her a one c is. So then I try to really not spiral into, well, can I even trust this data? Is she running low all the time? Mhmm. Whatever. You know? So it's just so much information, but to be in range 50% of the time, it's not good. I'm not looking for that five A one c. You know what I mean?
Scott Benner Yeah. I'm not arguing with you. I'm trying to say, like, unless she's incredibly low for long amounts of time, you're not missing by a lot. You're missing somewhere, obviously, if you're seeing two fifties or three hundreds that are lasting for a long time. Let's start slow here. How much does she weigh?
Danette Sixty pounds.
Scott Benner Sixty zero? Six zero?
Danette Six zero.
Scott Benner Okay. And how much insulin does she use a day?
Danette About twenty to twenty five units.
Scott Benner Okay. And that doesn't seem like it's enough?
Danette Sometimes.
Scott Benner I wonder like, what are reasons why she could be insulin resistant? Do you know what I mean? Like, I mean, she's a kid. Right? So she's active. She's moving around.
Danette Right. And that's another thing. Like, with the pumps, especially, we were having to have all these different basal rates around her physical activity because when she's active, she is so sensitive to insulin. And so it's just, overall, just extremely difficult to manage because I cannot expect her to sit still after a meal because of insulin. But then once she's high, it seems like it takes a lot to bring it down.
Scott Benner What's her basal at?
Danette So right now on MDI, we're at six and a half units of Tresiba.
Scott Benner Okay.
Danette And that seems to be a little on the high side because she's kind of drifting down between meals and overnight. I think it might be a little bit too much.
Scott Benner Okay. So overnight, she's drifting down by getting low or drifting down?
Danette Just difficulty all around. Like, I can never get her to bed at a normal number. Like, she's got sports and things like that, and she's rebound highs, and we're fighting with those. And so then by the time she finally is in range, she needs an applesauce because I was too heavy on the bolus. It's just different because we've been doing MDI for two weeks. Yeah. So it feels like it's all over the place.
Scott Benner I found myself wondering, and this is probably a great place to repeat this. I am not a doctor, and this is definitely not advice. And what I'm wondering is, are you seeing lows mainly after meals or after correction boluses?
Danette I don't even know.
Scott Benner Because I wonder if maybe your basil is not just it could be more aggressive, and then your carb ratio could be less aggressive. Like, what's your carb ratio at?
Danette For breakfast, it's one to nine. Lunch is one to 14. Yeah. It's like one to 14 the rest of the day.
Scott Benner Okay. So, again, I might say a ton of stuff that's wrong, but you sound like you're a little out of your mind over this. So, like, let's just try to, like, kinda spitball here and see what we can kinda figure out. Okay? What I'm wondering is, is there a way to use more basal and less meal insulin to overall affect what's happening? Like, is that possible? Because if she's using twenty five a day, if you were gonna accept the fifty fifty split as, like, a place to start, basil to bolus, then she'd be, like, a half unit an hour or twelve units a day in basil, but you're doing half of that at six.
Danette Yeah.
Scott Benner Right?
Danette I mean, when we were on the Moby, like, if we had a good day so when I proposed to our care team that I wanted to take a pump break, I looked at all the days that she was in range 75% or more, and then I looked at the split between basal and bolus insulin. And the average bolus or the average basal insulin was, like, 5.75 units.
Scott Benner 5.75. Mhmm. Okay.
Danette I didn't wanna take into consideration those days where she had an air bubble or something and, like, control IQ is cranking out all this extra insulin, and she's getting, like, quote, unquote, twelve units a day when she obviously didn't if she was, like, three hundred all day. On those good days, her basal was as low as four and a half.
Scott Benner Does she have hypothyroidism? No. Have you ever had her TSH checked? Mhmm. Do you know what it was?
Danette I don't recall. She had all that run last year. She's due for it again.
Scott Benner Do you remember it being in range or how they talked about it?
Danette Everything was in range.
Scott Benner Did she have any symptoms of hypothyroidism?
Danette I don't believe so.
Scott Benner No. She's not tired all the time or No. Moody, cranky? Mm-mm.
Danette No? Okay. Great disposition. I mean, she rolls with everything.
Scott Benner Yeah. I'm trying to think of reasons why the insulin might not be working as well or is effectively. Not sure. There's part of me, by the way, that thinks that when we're completely done this conversation, we should immediately make a transcript of it, roll it through a large language model, and then see what it spits back out too. I'm Mhmm. Sort of interested in that because you've been through too much. Like, it seems to me that you've climbed up every tree there is to climb up, and you are probably confusing yourself at this point. You know, God bless her, where she's brittle. You know what I mean? Like, or something that's happening that we're unaware of or something like that. I don't know. Like, it just seems to me one to nine is I mean, when Arden's on a GLP, her carb ratio is one to nine, and she weighs a hundred and twenty five pounds.
Danette Mhmm.
Scott Benner And, you know, is eating probably more aggressively than your little kid is over there. I'm just wondering if you don't have enough basil going, is everything just not working because of that? And that could be overly simplified. I have no idea. Does that make any sense to you, or does that sound crazy to you? I don't know you. Like, I'm just trying to work through what you said to me. So, like, if I said to you, you're using six units of basil right now, try eight tomorrow. Do you think that would, like, ruin things? Like, do you think it would crash her or something like that?
Danette I don't know. So like I said, last week, we just had a hell of a time with the insulin and things like that Yeah. Plus the antibiotic. So it was gonna be our opportunity to kinda reset. What I wanted to do is really dial in her settings, send her back to school with the shots, and be on our way. But because of the illness and the antibiotics and all that stuff, it was just not an ideal week to do that. So now we are trying to do that with her at school, with the activity. The only good thing about that is that she's got, you know, scheduled meals throughout the day, so she's not constantly eating like she was during spring break. But I don0't know. So for example, on Tuesday, she got her snack, and they dosed her for it plus a correction. She went low. So is that because the correction was too much? Is it because the basal was too much? Once I get her stable overnight, she's drifting down. Her line is not flat. So that makes me think that the basal is either too aggressive because she should just be flat. Right?
Scott Benner Yeah. Say it again for me. I'm sorry. Literally, just start over and say it one more time. I was thinking about something and I got lost for a second.
Danette Once I get her number in range Mhmm. Her number doesn't plateau out. She keeps drifting. Down. Down.
Scott Benner How many hours after her last bolus?
Danette Like, more than four or five.
Scott Benner And she drifts to a low spot or a place where you have to stop it?
Danette Yeah. We're treating. So high sixties.
Scott Benner Okay. So try to imagine a world where because right now, you're covering one unit is covering nine carbs. Okay? And she's getting what? Point two five an hour basically or six units a day of basil. And she's getting 25, basil and bolus combined.
Danette Mhmm.
Scott Benner So if you look at a sixty pound person just with a standard basal rate, you're looking at, like, fifteen units a day total daily insulin. But we're saying that's not what she's doing. She's doing 25. I'm using an estimator that's on my website right now. I don't know if you've seen that before or not. So, basically, what I did was I put her weight in at sixty. And on a physiological factor profile of standard, it says her total daily insulin should be about fifteen units a day. Seven and a half total basal and an insulin to carb ratio of one to 33. But that's not her situation. She's using twenty five a day. Now is she using twenty five a day because you're creating lows and feeding her more often than you have to?
Danette I don't think so.
Scott Benner I don't know. But if you don't think so, okay. So I just make her highly resistant on the chart, which then puts her theoretical total daily insulin at, like, 24 and a half, which is matching what you're telling me. When that happens, it's indicating that her basal need should be about 12 a day or point five an hour, but that her carb ratio should be one to 20. So my thought here is is if you meaningfully upped the basal and meaningfully decreased the carb ratio, maybe that's where the balance is. Like, maybe you are as simply as if the basal is not right, nothing else is gonna work. Is it possible that that's the situation and that she's been gaining weight and changing and you've been switching from shots to this pump to that pump so much that you just aren't seeing enough to make a reasonable decision.
Danette Probably.
A Strategy for Resetting and Moving Forward
Scott Benner Is that possible? So if that's the case and if that's a thing you wanna look into, we just have to figure out a way for you to test it for a couple of days. So my thought would be spring break's over. Right? Yeah. Yeah. My thought would be to choose a lot of meals that you know how to bolus for. Do you see what I'm saying? And something that you're really good at. Because right now like, forget all the math for a second. Like, think of a lunch that you give her, and you know that if she gets a certain amount of insulin, it's gonna go well. Right? Like, what is that lunch? How much insulin is that?
Danette You know, I really couldn't even tell you.
Scott Benner Okay. Alright.
Danette There's just so many variables. Feel like this is why I look at her numbers constantly because I don't know if I'm gonna get what I expect.
Scott Benner Okay.
Danette We get different outcomes with the exact same situation. And, you know, when we talk to a nurse or a provider, it's like, well, that's just diabetes. And for me, that doesn't work because I want stability. I don't wanna have to call the nurse and say, hey. She just had this thirty point drop. You need to give her an applesauce. You need to give her juice. I don't wanna have to pay attention.
Scott Benner What's her insulin sensitivity? One unit moves or how far?
Danette So we have that at one fifty during the day because when she's on the pump, based on the types of auto corrections that she was getting, like, even a quarter unit or point two was making her go low with her activity schedule.
Scott Benner If this was me, I would be simultaneously moving the basal more aggressively while I make the carb ratio less aggressive. Just hoping that that puts me in a good enough place that I don't really have to worry about corrections for a minute because just the math on 25 units a day at her weight is saying point five an hour basil, one unit covers 20 carbs, one unit moves her 75. And I don't know if any of that would be right or not. Mhmm. But what I do know is it's nowhere near what you're doing. Let's just imagine for a second that 12 basal is right for her. I mean, that's it's aggressive for a sixty pound person. What I'm gonna say is is that it's possible that once you get these things kind of adjusted in better, you might find that her total daily insulin is not 25.
Danette Right.
Scott Benner It's gonna probably be lower than that by the time you do it, but you're not gonna be able to get to it if you're under baseling or over bolusing things, making her low, feeding her again, then drifting lower all night long and having to add food, which eventually needs insulin. So I don't know how much extra insulin you're using because of the the way things are happening. But I think if this was me, I'd move her basal up. I would be less aggressive on carb ratio using some foods that are not super fatty or difficult to bolus for or really sugary for a while just to get stable.
Danette Mhmm.
Scott Benner Because I don't wanna sound like an old timey CDE here, but, like, it feels like what you need is, like, some good old fashioned basil testing
Danette Right.
Scott Benner To get that set in. And then once you're comfortable knowing, hey. Look. This basil's working. Now you could dial in the carb ratio a little bit and say, okay. You know, I'm good at this meal. Seems like one unit is covering x amount of carbs. Then get that closer. Then once you've got those two things figured out, then you can start fiddling with the sensitivity a little bit and trying to figure out what that is. Because your numbers are, like like, everything doesn't sort of make sense, which to me says the basal's not right.
Danette Right.
Scott Benner That's really I mean, that's it. To me, it doesn't she's getting six a day basil. I think it would be fair to try eight and then see what happens. It's Tresiba. Right? So what's it running like that weird clock? What do they say it's in there for? Thirty six hours till it's gone or something like that? Right? It kinda overlaps with the next injection. So if you wanted to move up more slowly, I would think that would make sense. Like, if you're six, go to six and a half, wait till your next injection. She's not getting low. Great. Let's go to seven. You know? And then with an eye on maybe seven and a half as maybe the baseline, And then, hopefully, you're using less insulin at meals because you've got more basil going. You will use less insulin at meals because you've got more basil going. Right?
Danette Right.
Scott Benner And then just keep kinda dialing that in. It probably shouldn't take you more than, a week to get that straight if that ends up being the issue. But I don't know what else it could be. Like, I mean, I am a little you know, she's had pus in her cannula, that kind of stuff. I don't think it's worth ignoring that maybe she's having allergic reactions and her sights aren't working well. Like, maybe that's why she's needing more insulin. But still, if that was the case, I mean, she's MDI right now. Right? So, I mean, even if that was the case, that's not gonna be a thing you're gonna notice right now. So if you got the settings great on MDI and then went back to a manual pump and they didn't work, but she was having inflammation around the cannula and stuff, then maybe you'll say, okay. She seems to be having a reaction to the cannula material, which is why her insulin needs are going up. Does any of this making sense at all to you?
Danette Yeah. It's just hard to think about when to implement that.
Scott Benner When to implement what?
Danette Like, to start titrating up and evaluating meals and things like that.
Scott Benner We're not gonna give her any more insulin than she's getting now. We're just gonna move it into different places.
Danette So
Scott Benner weekends here. Right?
Danette Mhmm.
Scott Benner She goes to school on Friday. When do you shoot the basil, in the morning or in the evening?
Danette Evening.
Scott Benner Awesome. So Friday night, move up a half a unit, and then live through Saturday using less insulin for meals. By how much? I I don't that's the thing is I don't really know. But, I mean, we could do some, like, rough math. Let's do this. So if she goes up just a half a unit a day, then what's the percentage of that?
Danette But won't it take time to see that? Because we're working that's another thing also is that we're working with an educator from Integrated Diabetes, and she said that Tresiba can take a couple days to
Scott Benner To change.
Danette Yeah. Yeah. So, like, you had to evaluate it, like, two days at a time, basically.
Scott Benner Yeah. Because it's not an in and out in twenty four hours kind of thing. It overlaps on itself. So some of some of the injection from Friday night is still going on Saturday night. But my point is is that you just a half the unit up on the basal, okay, And then, I don't know, change the insulin to carb ratio, make it a little weaker. Just a little bit. Just to kinda make up for it in case you're worried. But I don't imagine that another half a unit of Tresiba is gonna suddenly make her low all day long. And by the way, if it does, then you're gonna feed the insulin, and then, you know, you won't do it the next day. Like, it's gonna be like a a life and death situation if you move a half a unit at a time, almost a rounding error. Mhmm. To me, that's the only thing that makes sense is to get a better balance of the insulin going. But if it doesn't make sense to you I mean, I would go talk about it with other people. If you're using somebody integrated, I have that conversation with them. I wouldn't ask your doctors. They don't sound like
Danette Oh, no.
Scott Benner Yeah. They're just gonna say, oh, shucks, ma'am. You're looking too close at all this.
Danette Yes. Pretty much.
Scott Benner We got the sugar. It's what are you gonna do?
Danette Yeah.
Scott Benner Yeah. Are you sleeping? No. No. Because you sound a little frazzled. Is that fair?
Danette Oh, yeah.
Scott Benner Yeah. Yeah. Yeah. Because you're in a really interesting situation. You're not the first person I met like this. You're like, I'm at my wit's end. I need something to do. What would you do? And I say, what about this? You go, I can't do that. I didn't laugh at you because you're in a dire situation today. No. But, like, but earlier when you said it, I was like, this is incredibly common because you're at the point now where you can't even fathom doing anything differently. Right? Like, it's just like, how do you even, like, contextualize making another change when all you've been doing is making changes for five years and nothing's working?
Danette Right.
Scott Benner I would say go back to basics on this one. If the basal's not right, then the boluses aren't gonna work. Gonna be higher. You're gonna be low. You're gonna be feeding insulin, or you're gonna be shooting more to get a a down. Get the basal right. Work on the carb ratio after that, then look at the insulin sensitivity at the end, which should be pretty easy by the time you have the two together. Mhmm. I think that's what you should be doing. I mean, the truth is is, like, if you just brought her here and left her here, I think I could get it straight for you. But it's because I've been sleeping, and I haven't been staring at this mess for five years. So I wouldn't be burdened by any of the what ifs. You said it earlier. Like, you're seeing ghosts at this point. Like, well, what if it's the cannula? What if it's the insulin? What if it's this? What if it's that? I say, stop thinking that it's any of that and just go back to the three things that we know definitely impact blood sugar. And if we can't get that right, then we could look at the what ifs again.
Danette Mhmm.
Scott Benner That makes sense?
Danette Yeah.
Scott Benner Yeah? You sure?
Danette Yeah. I think
Scott Benner so. Okay. Do you feel any better now that we've talked?
Danette I mean, yes and no.
Scott Benner Why not? Tell me the no parts.
Danette It just seems like there are just so many different things. Like, oh, well then, I don't know. It it's always something. You know?
Scott Benner I asked you to stay in the three things and you're beyond them again. So are you anxious?
Danette I'm not an anxious person until it comes to this.
Scott Benner Okay. And because you feel like a failure?
Danette Yeah. Or I can't control it or she's not with me. So let me just go ahead and up her basal and send her to school. And, you know, the nurses won't let me text her to have a couple of gummies here and there. I have to wait for them to do it and hope there's not an emergency across the street that they're attending to. These are all just I don't wanna say stupid, but,
Scott Benner what ifs. Yeah. I understand. But so, are you a control freak?
Danette I mean, apparently.
Scott Benner Would you have seen yourself that way before? What would your husband say if I asked him? That the baby Oh
Danette my god. He would say, of course.
Scott Benner No. Okay. Well, then can I give you the greatest advice that you'll never get from your husband and wouldn't take from him if he gave it to you?
Danette Stop being crazy.
Scott Benner You should calm down. Yeah.
Danette Yeah. Yeah. You said that before. Yeah.
Scott Benner Just just listen. If I could just get my wife to listen to me one time. My wife's been telling me the same thing.
Caregiver Burnout and the Importance of Sleep
Scott Benner I want you to know that I got married in 1996. It is 2026 right now. I dated that girl before we were married. Okay? So I think we've been together something like thirty three years or something like that. My wife's a very hardworking person. Okay? She is, what we used to call type a, but now we call anxious. I said to somebody the other day, I can't wait to find out what we call it next time. Because, you know, remembering it used to be like, oh, they're wound pretty tight. Like, we've had all these little sayings for anxiety, like, throughout the world. My wife's an anxious person. She's also a go getter. She's a type a. She however you wanna think about it. You give her a job, she can do a really good job. Okay? And she's in an industry where something's always happening. Something's always happening. Probably 10 things are always happening. Probably a 100 things are always happening. She's always behind. My wife always says to me, when I get caught up, I can stop working so much. And I say to her, it's been thirty years. You haven't caught up yet. Maybe it's time to stop thinking that's gonna happen. But she's like, no. No. No. No. I'm gonna get it. That's the place you're at. In the end, those doctors are a little right. It is diabetes to some degree. Like, it's not a thing you're just gonna know black and white all the time. And if you don't have that art part of it, if you can't just go, well, let's turn this up and see what happens. You know what I mean? Like, if you can't do that part, then you are busy trying to cage a tiger made out of water. It isn't a thing you're gonna be able to make perfect, but you can get it close enough that perfect doesn't matter. And I think that's where somebody like me with this sort of like, hey. Let's just see what happens attitude. Mhmm. I think you're probably stuck in years of what you perceive as failure, which I would tell you is not failure. It's just not perfection. And you're stuck in a little bit of that feeling of I'm letting her down. I can't stop looking. I can't look away. If I look away, what if this happens? Like, those are a lot of uncontrollable things. It's probably how you get yourself in the situation. And I don't mean like you did it to yourself, but how you find yourself in the situation where a person who doesn't know you that well, who's only seeing you every three months says to you, maybe you should just be happy with what you got, which I think is their way of saying, lady, calm down.
Danette Yeah.
Scott Benner But they can't say that to you because, you know, laws and polite and everything. But I think your settings are wrong. That's it. I think your settings are probably a little wrong. And once you got them a little closer, you wouldn't be chasing stuff around all the time. You probably wouldn't be over or under reacting to something causing the next problem because that's all that's happening. You need to start over. You need a baseline to start over at. I mean, you got the right idea, and you tried to do it at spring break, and then she got that infection. That must have felt like a cruel joke when that happened. Oh, yeah. Yeah. By the way, you're like, well, it's okay. Spring break will come next year again. I don't know. Like, you have to tell me honestly, do you think you can just I mean, I don't know. Do have weed? Like, is there a way you can calm down for a little bit and relax and just kinda, like, turn your focus down by 40%?
Danette I don't know. I guess if I'm intentional about it.
Scott Benner Yeah. That was very honest. You're like, not sure. Hey. Is your mom anxious?
Danette No. No?
Scott Benner Like, when it comes to this kind of stuff, like, the diabetes is the only thing that makes me anxious. That's something. I mean, I will tell you, I was talking to someone at work, and we're just kinda talking about life.
Danette He was like, oh, that must be really hard to constantly worry about your daughter. I was like, you know, I'm good at everything I have ever done. Like, no effort whatsoever successful. You name it.
Scott Benner Mhmm.
Danette I can try things that I've never done before and just be good at them except for this. That's what it feels like.
Scott Benner Yeah. I think it may be the goalposts are getting not just moved on you, but maybe they're they've given you 10 goalposts and they're all moving at the same time, and you're trying to put them all where they belong. And that's just not how this is gonna work. Exactly. You know what I mean? I hate to do this to you. Like, it's timing and amount. You just have to put the right amount of insulin at the right time, and it'll work
Danette for you.
Scott Benner And so if you can at least, I think step one would be just try to believe that for a second and stop wondering what else could be happening.
Danette Mhmm.
Scott Benner And then step two would be, I know that Tresiba doesn't they want you to have two days worth of data before you know if you're making a change or not. But, I mean, honestly, you only have the weekend. You have a Friday night injection, a Saturday night injection, and maybe a Sunday night injection to make a decision before you're gonna send her back to school on Monday and feel like, oh god, what did I do? They're not gonna let me call her. I can't give her a gummy bear, like, before all that hits you. So you're just gonna have to do it. And so maybe it's gonna take a bunch of weekends instead of a week. Like, maybe you're gonna have to go little more on Friday, little more on Saturday, pause, get to Friday, do it again, and it might take you maybe two or three weekends till you get the basal where it's supposed to be, and you start getting a better feel for what the carb ratio actually might be.
Danette Mhmm.
Scott Benner That's possible. I mean, it sounds like a plan to me at least. Yeah. Oh, god. Was this helpful at all? Aren't you glad I didn't try to text this back to you? Oh my god. What'd you say? I said, aren't you glad I didn't try to just answer your email? Because I would have said something that would have just frustrated the hell out of you without the conversation, I think.
Danette Yeah. Yeah. I mean, it just seems almost too simple. Like, for example, we took her all the way up to, seven and a half units of Tresiba. She was going low, so took it back down. Like, all this back and forth is just so maddening.
Scott Benner You know? Put her to seven and a half, did you change the carb ratio?
Danette Well, because we were on that bad insulin, we didn't make any changes. I did make a change today because yesterday, uncharacteristic. So we'd switched to the fias because we just weren't getting a lot of you know, we want that fast reacting insulin because they are not prebolising her at school, which is fine. It is what it is. But she's recess, like, right after lunch, and it's starting to get warm outside. So she is running super hard, and we're having to back off her doses. And now we can't do an extended bolus, which was helping us on the pump, right, to kind of do an eighty twenty split over an hour. And now we're losing that ability, so it's kind of relearning how we're gonna approach dosing. So it's just like you said, it's just so many things at once.
Scott Benner You have made more changes to that kid's regimen in five years than I've made in twenty years. Yeah. Yeah. Stop talking about diabetes for a second because you just said something that I wanna dig into in this last little bit here. I know you gotta go. You're probably like, how long is that lady pumping? I didn't even think she had a baby. You said I'm successful at a a lot of things. I just set upon doing something and I do it, which means that your gut usually gets you there. Right?
Danette Yeah.
Scott Benner Like, gut decisions work out, generally speaking. And so this is maybe part of the issue. It feels like you're trying to find the answer so hard. You're just not doing what common sense says. Like, so in a regular life situation, like taking the diabetes out of it, I changed this. I moved that. I did this over here. I can't get like, what would you tell yourself? You'd say go back to one. Simplify. Right? Like, just Mhmm. Simplify. Let's push out the external extraneous stuff. Focus on the keep ourselves alive ideas. Let's sit in the house and watch movies all weekend. Right? Like, life's overwhelmed. What do you do? Life gets overwhelming. You get to the weekend. You put a ball game on Friday night. You watch a movie on Saturday. You stare at a goddamn wall on Sunday, and you go back to work. Because you didn't, you were gonna, like, end up in a clock tower somewhere. Like right? So do that to diabetes. Just go back to go. Like, start over again. Mhmm. Forget all you think you know about what's happening, and just what does your gut tell you to do? Right? Like, get her basal right, set her carb ratio, work on the rest later. You keep saying, well, she's gonna run around. It's hot. There's this. There's that. You can't balance all that. Your brain isn't capable of that. I don't know we could feed all that into a machine and get out the right answer. So just control the parts you know, do it at a basic level, go to basic life support, control the parts you understand, see where that gets you, and build slowly. I think it's possible you maybe started too many projects all at once, so you don't know what's impacting what anymore. Mhmm. Does that ring true to you at all?
Danette Yeah. That's fair.
Scott Benner Yeah. Alright. Well, I fixed it. There. Good. Well, there you go. Do that then.
Danette If I can unsubscribe and I can stop listening then.
Scott Benner Well, hey, listen. If this works for you, you better download every episode. Just let it play overnight. I don't care if you listen or not. I feel like this has been a valuable conversation, but I don't know if it has or not. And you won't know for a while either. Yeah. Will you, like, reach out and let me know what's going on?
Danette Yes. I will.
Scott Benner Okay. If this actually works, you're gonna come back and record for, like, another half hour. Will you do that for me?
Danette I will.
Scott Benner And if it doesn't work, you can come back and yell at me. That'll be fine. Gosh. I hope you can on top of what I just said, you're married. Right? That guy didn't kick that boy out. Right? So No. I would tell him, on Friday night, I'm going to sleep, and you're taking care of that kid. And on Saturday night, I'll do it for you. But you and I are both sleeping ten hours at least once this weekend because I think that will help you. We didn't talk about it a lot, but from my personal experience, when you start getting low on sleep like this, that's when you start sounding like you're sounding when you're talking about stuff. You seem frazzled, and I'm telling you, like, sleep drips away slowly. You don't recognize it as it's escaping out through the seams, and it's not a thing you can power through even though you think you can. You get some good sleep, a lot of this might make more sense.
Danette Yeah. That's true.
Scott Benner Yeah. I'm being dead serious with you. Like, the light of day on good sleep, you make a lot of better decisions than you are right now. I listen. I've been married a long ass time. I don't have a serious conversation about anything after 8PM. Because when people are tired, and the later it gets, the worse it goes. And you're in the middle of that conversation, and you think you're right. You think it's important. You think it's right. You think it's life or death. I have to make this point right now. And you wake up in the morning, you think, what in hell were we arguing about last night? And I'm telling you that's all being tired. Mhmm. So I would do trade offs the next couple of weekends. Everybody gets a full night's sleep at least once on a weekend, get her stuff going a little better. Your life could look just completely different in a month. You know? But you gotta stop chasing all the ghosts and thinking you're actually gonna catch them all, name them, put them in order, make sense of them. None of that is probably even important. I heard you quote the podcast a bunch of different times in this hour. Don't forget, often, the best thing to do is nothing.
Danette Mhmm.
Scott Benner Yeah. Often, there's nothing to do. People just overengineer everything and touch too many buttons and, you know, and I mean life, not just diabetes. Yeah. Yeah. Chill out. Watch a movie. Go out for dinner. When's the last time you had sex? Do that. Try to chill out a little bit.
Danette All the things. I'll do all the things.
Scott Benner Yeah. Yeah. Do them all. Right. Act like you're 20. Was the weed idea good or you you don't do that?
Danette No. I don't do that.
Scott Benner Well, find something. Don't drink. Okay? I'm pretty sure drinking is bad. Alright. We're good?
Danette We're good.
Scott Benner Alright. Hold on one second for me. Okay? We're gonna
Danette stop. The
Scott Benner podcast episode that you just enjoyed was sponsored by Eversense CGM. They make the Eversense three sixty five. That thing lasts a whole year. One insertion. Every year? Come on. You probably feel like I'm messing with you, but I'm not. Eversensecgm.com/juicebox. The conversation you just enjoyed was brought to you by US Med. Usmed.com/juicebox or call (888) 721-1514. Get started today and get your supplies from US Med. Today'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. Have 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.
#1844 Valyrian Steel
Suzanne discusses her 34-year journey with Type 1 diabetes , navigating chronic fatigue syndrome , and the challenges of caring for her 85-year-old mother who also has T1D.
Key Takeaways
- Stress Directly Impacts A1C: High-stress situations, such as difficult relationships, can significantly alter blood sugar control and visibly impact A1C levels, highlighting the profound mind-body connection in diabetes management.
- Chronic Fatigue vs. Diabetes Burnout: While Type 1 Diabetes is a heavy burden, the predictability of its management differs greatly from the unpredictable, exhausting nature of Chronic Fatigue Syndrome (MECFS), requiring intensive pacing and rest.
- Investigate Underlying Thyroid Issues: Unexplained fatigue, brain fog, and muscle weakness are classic symptoms of thyroid conditions like Hashimoto's. Medication sizing is crucial; overly high starting doses can cause anxiety and heart racing.
- Caregiving Complexities with T1D: Caring for an aging parent who also has Type 1 Diabetes introduces unique challenges, particularly when cognitive or dexterity issues prevent them from managing their own insulin pumps or CGMs.
- Dementia Symptoms Can Be Medically Induced: Apparent cognitive decline or dementia in the elderly can sometimes be the result of overmedication (e.g., stacked blood pressure drugs or statins). Reevaluating prescriptions can sometimes reverse these symptoms entirely.
Resources Mentioned
- Juice Box Podcast Facebook Group: Juice Box Podcast, Type One Diabetes
- Juice Box Podcast Lists: juiceboxpodcast.com/lists
- US Med: usmed.com/juicebox or call (888) 721-1514
- Omnipod 5: omnipod.com/juicebox
- Wrong Way Recording (Rob): wrongwayrecording.com
- COVID Institute: covidinstitute.org
Sponsors and Announcements
Scott Benner Here we are back together again, friends, for another episode of the Juice Box podcast.
Suzanne Hi, I'm Suzanne. (0:17) I've had type one for probably thirty four years. (0:21) I've had chronic fatigue syndrome for twenty four years. (0:25) I'm a musician, and I take care of my mother who also has type one, and she's been living with me for about seventeen months.
Scott Benner 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. (0:43) But everybody is welcome. (0:44) Type one, type two, gestational, loved ones, it doesn't matter to me. (0:49) If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, type one diabetes on Facebook. (0:59) Alright.
Scott Benner Let's get down to it. (1:00) You want the management stuff from the podcast. (1:03) You don't care about all this chitting and chatting with other people. (1:06) Juiceboxpodcast.com/lists. (1:09) They are downloadable, easy to read, every series, every episode.
Scott Benner They're all numbered. (1:16) Makes it super simple for you to go right into that search feature in your audio app. (1:19) Type juice box one seven nine five to find episode 1795. (1:25) Juiceboxpodcast.com/lists. (1:30) Nothing you hear on the juice box podcast should be considered advice, medical or otherwise.
Scott Benner Always consult a physician before making any changes to your health care plan. (1:46) This episode of the juice box podcast is sponsored by US Med, u s med dot com slash juice box, or call (888) 721-1514. (1:57) Get your supplies the same way we do from US Med. (2:01) Today's episode is also sponsored by Omnipod. (2:05) Check out the Omnipod five now with my link, omnipod.com/juicebox.
Scott Benner You may be eligible for a free starter kit, a free Omnipod five starter kit at my link. (2:18) Go check it out. (2:19) Omnipod.com/juicebox. (2:22) Terms and conditions apply. (2:23) Full terms and conditions can be found at omnipod.com/juicebox.
Diagnoses & Family History
Suzanne Hi. (2:29) I'm Suzanne. (2:30) I've had type one for probably thirty four years. (2:34) I've had chronic fatigue syndrome for twenty four years. (2:38) I'm a musician, and I take care of my mother who also has type one, and she's been living with me for about seventeen months.
Scott Benner Oh, I am excited to talk to you.
Suzanne Great.
Scott Benner Also, do you know that Suzanne is the name of the orangutan in the Jay and Silent Bob movies?
Suzanne In the what movies?
Scott Benner Yeah. (2:57) I didn't think you would know. (2:58) It's okay, Suzanne.
Suzanne No. (2:59) I did not know.
Scott Benner Yeah. (3:00) The people listening are the who know are like, oh, no kidding. (3:02) He's right. (3:03) Okay. (3:04) But the rest of you are going, I don't know what he's saying.
Scott Benner Anyway, let's figure out who you are. (3:10) How old are you?
Suzanne Okay. (3:12) I'm 62.
Scott Benner Oh, you have a young voice.
Suzanne Yeah. (3:16) You know, I I do. (3:17) I I think I've worked with kids a lot in my life, but I never had kids on my own, so it keeps me young.
Scott Benner I have to tell you. (3:24) I'm gonna take a I'm gonna take a page out of your book today. (3:26) I swear I thought you were in your thirties when you started talking.
Suzanne Oh, great. (3:31) Great.
Scott Benner I'm going
Suzanne with that. (3:32) Some days I feel like I'm in my nineties, so there you go. (3:35) Yeah. (3:35) We'll we'll get to that as well.
Scott Benner So Okay. (3:37) You're 62. (3:39) And when were you diagnosed with type one? (3:40) At what age?
Suzanne I was 28.
Scott Benner That's thirty four years ago.
Suzanne Yeah.
Scott Benner Okay.
Suzanne Yeah.
Scott Benner And you say your mom has type one?
Suzanne She does. (3:50) Well, I mean, she when she was diagnosed, she was diagnosed as type two, and then she began to need insulin.
Scott Benner Okay. (3:58) What age was that for her?
Suzanne She was in her fifties, I believe.
Scott Benner Okay.
Suzanne Yeah. (4:05) It it wasn't too long. (4:06) It was probably within a decade after I was diagnosed. (4:09) Well, how old is she now? (4:11) She's 85.
Scott Benner Damn. (4:13) Alright.
Suzanne Yeah. (4:14) Well, good for her. (4:15) She's got a fascinating story too.
Scott Benner So I think we're gonna pick through the whole thing, Suzanne. (4:20) Don't worry.
Suzanne Okay.
Scott Benner Okay. (4:21) So you're diagnosed thirty four years ago as an adult out of nowhere. (4:25) Did it feel Yes. (4:26) Yeah?
Suzanne Yeah. (4:27) It like, I have some distant relatives that had it, but it wasn't something we talked about in our family.
Scott Benner Mhmm.
Suzanne I was a complete textbook case, but I had no idea. (4:37) And I was diagnosed in December, and I wasn't feeling well since the spring. (4:43) And I was a I'm a singer. (4:46) And the first thing was I lost my vocal range. (4:49) I had a range of about five notes, and I have a huge range.
Suzanne But so that was one thing, and then there was just all these little weird clues along the way. (4:57) And then it was a big surprise, finally.
Scott Benner You said distant relatives had type one, like aunts, uncles, second cousins, like
Suzanne Great great grandfather maybe and my grandfather's sister or something like that.
Scott Benner Okay. (5:12) So no nobody who you even were around any frequency. (5:16) Okay.
Suzanne Right.
Scott Benner How about other autoimmune stuff in your extended family?
Suzanne Not that I No? (5:24) Really know of. (5:25) That's okay. (5:25) Yeah.
Scott Benner How about your mom? (5:26) Does your mom have anything besides the diabetes?
Suzanne She's got some eczema, and she's got she's got fatty liver disease, but I don't I don't think that's autoimmune. (5:36) But the eczema probably definitely is.
Scott Benner Yeah. (5:39) Is she overweight?
Suzanne She was. (5:41) Now she's very thin.
Scott Benner Through the process of the end of her life? (5:45) Is that what's doing it, or do you think they're leaving her blood sugar?
Suzanne It probably could be. (5:51) We thought she had dementia when she moved in with me, but it turns out she doesn't. (5:55) But that's a whole another story in itself.
Scott Benner Oh, we're gonna get to how you misunderstood that your mom had dementia. (6:01) That's gonna be good too. (6:02) You Yeah. (6:03) You're gonna be a fount of conversation. (6:04) This is excellent.
Scott Benner Yeah.
Suzanne Know. (6:06) I'm like, I I hope we can like, hope I can get everything. (6:08) Yeah.
Scott Benner Yeah. (6:09) Everyone settle in. (6:10) I feel good about this. (6:11) Okay. (6:11) So you're Yeah.
Dating and Stress Impacts on A1C
Scott Benner You're you're single person. (6:13) Now you said you're not married, but have you ever been?
Suzanne No. (6:16) I I've never been married. (6:17) A few near misses, but no. (6:20) Yeah.
Scott Benner Do you mean that sadly or happily?
Suzanne Both. (6:27) You're like, oh, I got away with it a couple of times. (6:29) Scott, I almost got hooked up to a real dud. (6:32) But but, you know you know what? (6:34) I have an anecdote that you might be interested.
Suzanne First of all, three guesses who was my I I I live in Iowa, but I lived most of my adult life, and I was diagnosed living in Boston. (6:44) Okay. (6:45) So three guesses who one of my doctors was for a number of years.
Scott Benner God. (6:50) Just tell me.
Suzanne Doctor Handy was my doctor.
Scott Benner Really?
Suzanne Yeah. (6:55) Yeah. (6:55) I I he was great.
Scott Benner You heard him on the podcast. (6:57) You're like, that guy used
Suzanne to be my doctor. (6:59) Yeah. (6:59) I'm not I'm like, oh, doctor Handy. (7:01) Yeah. (7:02) And and it's funny because I didn't even know he was a weight expert because my weight was fine then.
Suzanne He was meant to tell me
Scott Benner Yeah. (7:08) Yeah.
Suzanne He he used to tell me my weight was perfect. (7:11) I mean, who doesn't need a guy in their life telling them that their weight is perfect?
Scott Benner Could use that, by the way.
Suzanne But, anyway, so I was I was yeah. (7:18) Anyway, I was trying to make a relationship work with somebody, and it was really affecting I I didn't really realize it until, of course, you know, I'd ended everything. (7:32) But it was really obvious from my a one c, and I told him, you know, I was trying to make a this relationship work. (7:39) Like, my a one c came way down after all of the stress. (7:42) And then, I'm not saying all relationships are that stressful. (7:46) This was a definitely a I've been in other relationships before that were not that stressful.
Scott Benner Can you explain to me? (7:52) This is after you're diagnosed?
Suzanne Yes. (7:54) And
Scott Benner Yeah. (7:55) And you're working through it's it's tough dating as an adult, isn't it?
Suzanne Yeah.
Scott Benner Yeah. (7:59) Yeah. (8:00) You don't get to grow with the person. (8:01) You get, like, the fully formed person, then you have to see if you can make it fit, I would imagine. (8:05) Yeah.
Scott Benner Yeah. (8:06) Yeah. (8:06) You're dating someone. (8:07) It's going what you think is well enough to put effort into it, but it was stressful?
Suzanne Very stressful. (8:13) And and it was very obvious, the difference between my a one c when I was trying to make the relationship work and when I had ended it. (8:21) Wait. (8:22) Because of, like, adrenaline, cortisol, etcetera, or because you just weren't
Scott Benner focusing as well on yourself at that point?
Suzanne No. (8:28) I think it was just yeah. (8:29) I think it was just this this was a really, really stressful situation.
Scott Benner Oh, I didn't know that could happen. (8:35) I'm probably killing my wife and not realizing it. (8:38) Oh, well, if you hear this, Kelly, I'm sorry. (8:41) Yeah. (8:41) And
Suzanne No. (8:44) No. (8:44) It was just super stressful, and and and it was very obvious in the difference of my a one c. (8:49) And I I I mentioned that to doctor Hamdi. (8:51) So the next time I came to see the him, he's like, so what's going on with the boyfriend?
Suzanne And, you know, so
Scott Benner Did doctor Hamdi make you break up with him? (9:00) Is that what happened?
Suzanne No. (9:00) No. (9:01) No. (9:01) No. (9:01) No.
Suzanne And I and I I don't even think I'd mentioned him until, like, I saw, like, wow. (9:06) This is pretty this is pretty intense. (9:08) And he he wasn't like, oh, that couldn't be. (9:10) He was like, no. (9:10) Yeah.
Suzanne This happens.
Scott Benner No kidding. (9:12) I get I should probably tell people just because everyone doesn't listen to every episode of the podcast, much to my chagrin. (9:19) But Hamdi is in episode it would be nice if spell checker didn't change what I typed. (9:29) Fourteen eleven GLP essentials with doctor Hamdi. (9:33) He was really excellent.
Scott Benner Like, I got a lot of a lot of good feedback about him being on the podcast, actually.
Suzanne Yeah. (9:39) No. (9:39) I wish I I wish he was still my doctor right now.
Scott Benner Yeah. (9:42) So you moved away from him? (9:43) You broke up with him and the guy?
Chronic Fatigue Syndrome
Suzanne No. (9:45) No. (9:45) I moved back to Iowa. (9:47) I I, moved back to Iowa because I had I ten years into diabetes, I got chronic fatigue syndrome. (9:53) Oh, okay.
Suzanne I was I was really having a hard time just, you know, making life. (9:59) Very expensive to live in Boston for one thing.
Scott Benner Yeah. (10:02) But And cold. (10:03) I don't like the idea of how cold it is.
Suzanne You know, it's kinda the same here. (10:06) It's it's it's not always at the same time, but it's it's pretty much the same weather.
Scott Benner The same thing. (10:11) So would you you move home to be with your mom or to be around family?
Suzanne Yeah. (10:15) I I moved to to be with my mom, and I I lived with her for three years, and then I got my own apartment.
Scott Benner Wow. (10:21) It took you three years to get on your feet after that? (10:23) Was that was that financial or medical?
Suzanne Financial for one. (10:28) Yeah. (10:28) And I was I was able I was trying to get on disability when I was in Boston because I I loved being in Boston. (10:34) I got denied, and then I moved here. (10:37) And I I wasn't even gonna apply again.
Suzanne I was so frustrated, and I applied, and I got on right away. (10:44) And so then I I was able to get my own place after that.
Scott Benner What year was this?
Suzanne This was I moved at the 2014.
Scott Benner 2014. (10:54) Okay.
Suzanne And then I I think I got my own place at the 2018.
Scott Benner And how did that impact diabetes, the chronic fatigue?
Suzanne It's hard to say, but I I will say one thing. (11:06) The difference between chronic fatigue and diabetes. (11:09) So diabetes, you know, I'm feeling sick. (11:13) I finally go to the doctor. (11:16) He sends me to the ER.
Suzanne I'm in DKA. (11:19) I spend a week there. (11:21) I was in intensive care for the first three or four days. (11:24) I was a mess. (11:25) My doctor didn't think I was gonna he was surprised to see me the next day.
Suzanne But I'm there. (11:30) I come out, and then I live my life. (11:32) I have to check my blood sugar. (11:34) I have to take insulin, but I'm living my life. (11:37) With chronic fatigue, you feel sick.
Suzanne You go to lots of doctors, and they don't have any answers. (11:43) And, you know, and you don't get your life back. (11:46) So
Scott Benner Has anything helped over the years?
Suzanne Yeah. (11:51) I'm sure lots of little things that I don't even realize that if I stop doing, it's just a lot of pacing and having to yeah. (11:58) It it Sounds like long COVID. (12:00) Yeah. (12:01) It it it a lot of people say it's pretty much the same thing.
Suzanne And I I even had my doctor, like, go on a a doctor had me go on a protocol, and I was lot of supplements, and I was just too sensitive to a lot of the supplements to
Scott Benner Have you ever had in the past, like, Epstein Barr? (12:19) Or
Suzanne I don't know. (12:20) Like, it's like, the tests I've had for that are kind of what's the word? (12:25) Either equivocal or unequivocal or like like like, probably.
Scott Benner Said, I don't know. (12:31) Is that right?
Suzanne Yeah. (12:32) Yeah. (12:32) Yeah. (12:32) Yeah. (12:32) And I've I've had one virus called h h v six.
Suzanne That's a virus that I have had, and I've I've I I was gonna treat for it, and then I decided not to. (12:44) I you know, it's kind of a six of one half dozen of the other dealing with side effects and all that. (12:50) So I mean, I've tried so many different things. (12:52) I've recently done like an adrenal program and I've worked with the same doctor previously when I was first diagnosed, but it's still yeah. (13:03) I feel like I'm getting worse lately, like, my fatigue.
Suzanne And and I feel like I'm having new issues now, and I'm just like, okay.
Scott Benner I'm I'm doing some picking while you're talking. (13:14) Viruses linked to the onset, Epstein Barr virus is just mono HHV six influenza, SARS viruses that are COVID relatives, but, you know, it was 2014. (13:25) Not that you couldn't have gotten a different virus previous to that. (13:29) It often goes hand they don't call it autoimmune, but there's doctors who talk about it like it is.
Omnipod and US Med Promos
Scott Benner This episode is brought to you by Omnipod.
Scott Benner Would you ever buy a car without test driving at first? (13:43) That's a big risk to take on a pretty large investment. (13:46) You wouldn't do that. (13:47) Right? (13:48) So why would you do it when it comes to choosing an insulin pump?
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Scott Benner Find my link in the show notes of this podcast player or at juiceboxpodcast.com. (14:39) You've probably heard me talk about US Med and how simple it is to reorder with US Med using their email system. (14:46) But did you know that if you don't see the email and you're set up for this, you have to set it up? (14:50) They don't just randomly call you. (14:52) But I'm set up to be called if I don't respond to the email because I don't trust myself, a 100%.
Scott Benner So one time, I didn't respond to the email And the phone rings at the house. (15:02) It's like, ring. (15:03) You know how it works. (15:04) And I picked it up. (15:05) I was like, hello?
Scott Benner And it was just the recording. (15:07) It was like, US Med. (15:08) Doesn't actually sound like that, but you know what I'm saying. (15:10) It said, hey. (15:11) You're, I don't remember exactly what it says.
Scott Benner But it's basically like, hey. (15:14) Your order's ready. (15:14) You want us to send it? (15:15) Push this button if you want us to send it. (15:18) Or if you'd like to wait, I think it it lets you put it off, like, a couple of weeks or push this button for that.
Scott Benner That's pretty much it. (15:24) I push the button to send it, and a few days later, box right at my door. (15:28) That's it. (15:29) Usmed.com/juicebox or call (888) 721-1514. (15:34) Get your free benefits checked now and get started with USmed.
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Hashimoto's and Thyroid Symptoms
Suzanne Yeah. (16:02) Do you
Scott Benner have Hashimoto's?
Suzanne When okay. (16:03) When I was first getting the, dealing with the fatigue, I went to a naturopath, and she took some tests and I had a lot of antibodies for my thyroid. (16:14) I've never been able to take thyroid medication. (16:16) I have a doctor that tests my thyroid on the regular. (16:19) With diet and such, I was able to get all my antibodies to go away, but I feel like I probably should be tested again.
Scott Benner Yeah. (16:26) I mean, do you remember how long ago was it that you were tested the last time you got a full thyroid panel?
Suzanne A full thyroid panel. (16:33) Probably probably within the year.
Scott Benner Do know what your TSH was then?
Suzanne It's always super normal. (16:39) Like, it's You know what that TSH what?
Scott Benner Numbers. (16:43) What does that mean? (16:44) Numbers?
Suzanne Ugh. (16:45) I forget.
Scott Benner Because I say I'm super normal, but then people meet me and they don't say the same thing.
Suzanne So Okay. (16:50) I can I can look it up while we're chatting?
Scott Benner Would probable.
Suzanne Yeah. (16:53) Yeah. (16:53) Absolutely. (16:54) Okay. (16:54) Absolutely.
Scott Benner Thank you. (16:55) I wanna keep talking about this for a half a second.
Suzanne Sure.
Nicotine Patches and Long COVID
Scott Benner You're describing feeling like, you know, my wife talks about long COVID. (17:04) We we, like, zapped her out of long COVID with nicotine patches.
Suzanne Wow.
Scott Benner And so if you haven't heard that, it's, like, at the end of an episode somewhere. (17:14) So I'll I'll go back over it with you for a second, and I have no idea if these two things, like, will interact. (17:21) But while I'm talking to our overlords and you're speaking, I said, can nicotine help with this? (17:27) And it says some people think nicotine might help. (17:29) But right now, the evidence is very weak and mostly theoretical.
Scott Benner Nicotine affects several systems that appear abnormal in MECFS, nervous system, brain alertness, inflammation, etcetera, anti inflammatory pathways. (17:42) Nicotine can activate something called the, oh my god, cholinergic anti inflammatory pathway, which may reduce inflammatory signaling from the immune system. (17:52) So I'm gonna ask it in COVID in long COVID patients. (17:58) The nicotine spike protein idea. (18:00) Some research proposes that SARS CoV two spike protein interacts with nicotine receptors.
Scott Benner These receptors are involved in automatic nervous system regulation, inflammation control, brain signaling, muscle function. (18:13) The theory suggests the spike protein might interfere with these receptors, which could contribute to symptoms seen in long COVID, POTS, severe fatigue, and brain fog. (18:23) So nicotine binds to those same receptors. (18:26) So the idea is is that nicotine might compete with the spike protein at the receptor and restore the signaling. (18:32) And I will tell you that, you know, my wife was sort of at wit's end with long COVID.
Scott Benner And I had heard
Suzanne this know what it's like. (18:41) You know what this is like.
Scott Benner Parifying. (18:43) Absolutely. (18:43) So, you know, go to the mall, come home, three days resting?
Suzanne Yeah. (18:48) Yeah. (18:48) Exactly. (18:48) Exactly. (18:49) Like like, I'm I'm very excited about this interview, but I'm like, okay.
Suzanne At least I'm very glad I don't have anything else that I have to do today.
Scott Benner Right. (18:56) No. (18:56) No. (18:57) No. (18:57) I've I've I've seen it for a while now.
Scott Benner I saw some people online talking about it. (19:01) Seemed like bro science at that point. (19:04) And but I still mentioned it to my wife. (19:05) Let me clear my throat. (19:06) Anyway, she, poo pooed me.
Scott Benner And Uh-huh. (19:09) As she should have, by the way. (19:11) And Yeah. (19:11) And then I'm talking to a lady on the podcast a few years later a few months later, excuse me, and she says, oh, I've, you know, really getting my long COVID, under control. (19:21) And I was like, how'd you do that?
Scott Benner And she goes, oh, you know, I hope this doesn't sound crazy, but I use nicotine patches. (19:25) And I was like, oh, I've heard of that. (19:27) We talked it through, and I went on Amazon, ordered nicotine patches, and, you know, basically said to my wife, like, know, just do this. (19:35) What could Mhmm. (19:36) You know, it's not gonna hurt you.
Scott Benner It's not like it's not it's not like your your head's gonna pop off. (19:41) Like, put the nicotine patch on once every twenty four hours, and let's see what happens. (19:44) And I'd say about three weeks into it, I overheard her on a call with a colleague telling them, my husband, like, he suggested this, and I feel a lot better now. (19:53) And it really did help
Suzanne her Wow.
Scott Benner Astonishingly. (19:56) Anyway
Suzanne I I mean, I I it might be worth a try. (19:58) I'm very sensitive, like, to a lot of things, so it's like I have to be careful with, like, regular coffee.
Scott Benner Start with half a patch. (20:06) Cut it in half.
Suzanne Yeah. (20:08) Yeah. (20:08) You know, I I mean so I I I did find my TSH, and I'm 2.23.
Scott Benner Yeah. (20:13) See, I would tell you to listen to episode four thirteen of the podcast where, integrative doctor and endocrinologist is gonna tell you that anything over two one with symptoms needs medication.
Suzanne I've tried thyroid medication many times, and I
Scott Benner It brings your TSH down, but doesn't make you feel better?
Suzanne I can't even take it for, more than a week. (20:33) What happens? (20:35) I what's the word? (20:37) I can't describe it, but I feel horrible. (20:39) Like, I it's it's it's kinda makes me, like, race.
Suzanne Like, I I can't
Scott Benner Oh, your heart races?
Suzanne Not my heart. (20:46) No? (20:46) Just my whole being. (20:48) I I can't even explain it.
Scott Benner It's How much are they giving you?
Suzanne Always go with the lowest doses. (20:53) We always start with the and I and I have a great doctor.
Scott Benner I believe you.
Suzanne Well, I it's funny. (20:58) Like, she has a a functional medicine practice, but she can't see me there because I can't afford her prices. (21:06) But I see her at another clinic that she works at through my insurance, so she doesn't have all the time to but but she she does what she can for me. (21:14) And so she she tests she constantly tests my and I'm always on the low end of normal. (21:20) So she's like, well, let's just try something.
Suzanne So I've tried different forms. (21:24) I've tried Cytomel. (21:25) I've tried I think I did Armour a long time ago, and I didn't think it did anything, and so I stopped. (21:32) But I think I should try that again, but my insurance doesn't pay for it. (21:35) Not that I wouldn't She was giving you the t three without the t four?
Suzanne We've tried everything. (21:40) Oh. (21:40) We've tried the we've tried all the things. (21:43) Did you ever tried sakes.
Scott Benner Tirosint? (21:46) It's like a Yeah. (21:47) Yeah. (21:47) You tried that either.
Suzanne It's funny.
Scott Benner Okay.
Suzanne It's funny because I was going through some stuff, and I found it the other day. (21:51) And I you know, I was like, oh, yeah. (21:53) I should probably throw this out. (21:54) Or
Scott Benner pop one in your mouth and see what happens. (21:57) Yeah. (21:57) So you're telling me that when you're on the lowest dose, it speeds you up?
Suzanne Yeah. (22:03) And not a and not a and not a comfortable way.
Scott Benner Okay. (22:06) I you know, I understand that part. (22:07) Like, did you try to go to, like, every other day? (22:10) Or
Suzanne Did I might have. (22:12) I don't remember.
Scott Benner Because what other what do you have all the classic, like, Hashimoto's symptoms?
Suzanne Lately, I have the weight gain, and that's been in the last few years.
Scott Benner Mhmm.
Suzanne Remember what the classic symptoms are?
Scott Benner Well, fatigue, persist yeah. (22:28) Yeah. (22:29) Persistent tiredness, low energy even after sleeping, weight gain. (22:33) Yeah. (22:33) Usually, five and twenty pound range happens even when you're eating less.
Scott Benner Cold intolerance, do you have that?
Suzanne Sometimes, but not all the time. (22:43) I get actually, I get hot a lot.
Scott Benner Okay. (22:45) Brain fog, slower thinking memory? (22:47) Yeah. (22:48) Okay.
Suzanne Big time. (22:48) I mean, that's been for twenty four years.
Scott Benner Depression or low mood?
Suzanne Can be. (22:54) Yeah.
Scott Benner Hair, skin, and appearance. (22:55) We're looking for hair loss on
Suzanne the scalp, loss of the outer third of your eyebrows. (23:00) Probably the eyebrow thing. (23:01) And I I've gone through bouts of hair loss. (23:04) Right now, I'm I'm not, but, you know, like, it just kinda comes and goes.
Scott Benner Yeah. (23:08) Suzanne, do you wanna keep going, do you wanna assume that you have Hashimoto's? (23:12) Rough or flaky skin, pale or yellowish tone?
Suzanne No. (23:16) Not really.
Scott Benner Okay. (23:17) Puffy face around your eyes?
Suzanne Maybe.
Scott Benner Brittle nails?
Suzanne Yeah. (23:22) That's I mean I mean yeah. (23:24) Definitely.
Scott Benner Constipation, muscle weakness?
Suzanne The muscle weakness is new. (23:29) I mean, the fatigue has been going on for twenty four years. (23:31) Yeah. (23:32) But the the muscle weakness is really within the last few years.
Scott Benner Okay. (23:35) Joint or muscle aching?
Suzanne They'll come and go.
Scott Benner Back in the day, heavy or irregular periods?
Suzanne Yes.
Scott Benner Low libido? (23:44) Sorry, Suzanne.
Suzanne Probably not. (23:46) Oh,
Scott Benner no. (23:47) You're still getting after it? (23:49) Suzanne, is that what you're telling me? (23:50) What is what is happening right now?
Suzanne I'm just saying I'm just saying
Scott Benner Oh, probably you don't wanna answer?
Suzanne No. (23:54) It's just kind of a sensitive question, but Sure it is.
Scott Benner Well, maybe that's a podcast. (23:59) If it was Yeah. (24:00) You know, if it was PBS, I probably wouldn't have asked you. (24:03) So you don't have to answer anything you don't wanna answer.
Suzanne Okay.
Scott Benner Okay? (24:07) Anxiety, heart palpitations, sweating, irritability.
Suzanne That can be. (24:11) Yeah.
Scott Benner Okay. (24:12) Wow.
Suzanne Also Go ahead. (24:14) That's all I mean, I I just don't I don't know. (24:16) I just don't think I have Hashimoto's, but but I I know that if I if I don't eat right, like, well, maybe, you know, maybe because diet has kinda kept things at bay. (24:26) But right now, yeah, nothing's keeping anything at bay.
Scott Benner I mean, listen. (24:30) A lot of these things are, like, vagaries that, like, apply to a lot. (24:34) It's a it's a problem with, like, a lot of autoimmune stuff, actually.
Suzanne Right? (24:38) Right. (24:38) Right.
Scott Benner Is it you just can be like, hey. (24:40) Do you have this? (24:40) Like, yeah. (24:41) Sort of 40 other things.
Suzanne Yeah. (24:43) No. (24:43) No. (24:43) The yeah. (24:44) The the nonspecific symptoms.
Scott Benner Yeah.
Suzanne Yeah.
Scott Benner When you're on the meds, racing heart, anxiety, jitteriness, sweating, trouble sleeping, shakiness, feeling amped up. (24:53) You had those things? (24:55) Okay. (24:56) Did it start with palpitations?
Suzanne No. (24:59) I don't I don't think I had palpitations that
Scott Benner I know of. (25:02) The Internet says that it that very possibly just has to do with the dose being too high.
Suzanne But we always we always started low. (25:10) Like like, if if the doctor said, oh, take this dose, I'll be like, oh, no. (25:14) Let's take it even lower.
Scott Benner You were able to, like, take half even or,
Suzanne Yeah.
Scott Benner Yeah. (25:19) Did it happen, like, as soon as you put the first pill in, or did it take a little bit of time?
Suzanne Both. (25:25) Usually we usually took a day or two, at least.
Scott Benner Yeah. (25:28) You are a lightweight, though, generally speaking. (25:30) Like, a lot of stuff impacts you.
Suzanne Yeah. (25:32) I'm I'm very sensitive.
Scott Benner Yeah. (25:33) Yeah. (25:33) That was nice. (25:34) So a nicer way to say it. (25:35) Yeah.
Scott Benner Yeah. (25:35) I'm sorry. (25:36) Yeah. (25:36) I am very similar. (25:37) Like, when I if I go for a procedure and they put me out, I'm like, you're not gonna eat much of that.
Scott Benner I'm like Yeah. (25:42) I'm like, I'll go out pretty easy. (25:43) Okay. (25:43) Well, I mean, listen. (25:44) I'm sorry.
Scott Benner I'm not I would just I'm just trying to help you, like, think through it.
Suzanne Appreciate it. (25:49) You know? (25:49) I feel like I wish I had house in my life except without the drug problem and the snarky attitude.
Scott Benner I don't know.
Suzanne You know? (25:56) Somebody who's like, we're gonna figure this out. (25:58) You know?
Scott Benner I thought the attitude was fun. (26:00) The drug problem was weird.
Suzanne Well, wouldn't be a show without the attitude.
Scott Benner I I guess you're right. (26:04) Yeah. (26:05) I guess you're absolutely right. (26:08) I yeah. (26:09) I don't know.
Scott Benner Like, it I mean, if it's Hashimoto's and you need the medication, then just splitting doses or just using a much lighter dose could possibly be your answer. (26:20) Like, as much as you didn't like how you felt when you were on it, did it dissipate some of the other problems?
Suzanne Not that I know of. (26:27) And and I think I think the reason I got so crazy on it is because I don't really need it. (26:34) I don't think that's really my root issue.
Scott Benner Yeah. (26:36) I take your point. (26:36) Like, if you didn't need it, this is exactly the outcome that would come from it. (26:39) Yeah. (26:40) Yeah.
Scott Benner For sure.
Suzanne But but I I I don't know. (26:41) But but I I am gonna have I was thinking I should have doctor my doctor do a, a thyroid panel next time I go see her a full one.
Scott Benner Yeah. (26:50) It's a shame. (26:50) I mean, honestly, though, I mean, for $30, you got nicotine patches coming from Amazon. (26:55) So
Suzanne Right.
Scott Benner You know, I mean, I would tell you the same thing I told my wife. (26:59) If there's seven milligram patches, it's $30 for 14 patches. (27:03) So I basically I think I paid $60 for a month. (27:06) She did it for a month, and she was, like, better. (27:09) So Okay.
Scott Benner I but I will tell you, I have dabbled with them just so I understood what was happening to her. (27:16) And it would be fair to tell you that after not using one for a while, I I tried to just slap one on again because she stopped and started, I wanted to see what was coming from stopping and starting. (27:28) And it like, I did like, I got nauseous from it. (27:32) Like, it was too much for me. (27:33) So I would if I was if you do this, I would definitely start slower.
Scott Benner Like, there's a world where I might even, like, quarter those patches up and wear, a quarter of it for twenty four hours just to try to get yourself accustomed to it or be you know, make a science experiment out of it and figure out how much of it. (27:49) I'm not saying a quarter is the right amount, but, like, just to give yourself a little bit of it and see if you can ramp up to it. (27:55) Because, I mean, honestly, for, you know, for a month's worth of trying something, if it actually helped you, like, think how amazing that would be.
Suzanne Right. (28:04) Right. (28:04) No.
Scott Benner She's not continuing to do it. (28:06) She just did it, and she stopped.
Suzanne Wow. (28:09) That's that's interesting. (28:10) Yeah. (28:10) Look at you can look it up.
Scott Benner There's a website online that talks about, nicotine and COVID if you wanna look into it.
Suzanne Can you recommend a brand?
Scott Benner I was using Havitrol.
Suzanne Havitrol?
Scott Benner H a b I t r o l. (28:23) There's other ones. (28:23) Okay. (28:24) Some of them are Okay. (28:25) Less expensive.
Suzanne Okay. (28:27) Well, just sometimes you go you go to look for something, and there's a million choices. (28:31) Yeah. (28:31) Yeah.
Scott Benner Yeah.
Suzanne Can somebody just give me a the work for the
Scott Benner Tell me what to do, please. (28:36) Yeah. (28:37) I'm not yeah. (28:37) I I have to find let me see if I can find the, nicotine protocol. (28:46) It's covidinstitute.org.
Scott Benner It it'll talk about nicotine. (28:54) What nicotine cannot do, nicotine doesn't it's it's so funny. (28:57) Like, everyone online says nicotine, like, like, interacts with the receptor. (29:03) And so it doesn't actually it doesn't touch the spike protein itself, and I don't even know. (29:10) I'm I'm looking here.
Scott Benner It weakly binds to the alpha seven nicotine receptor on a different site, the spike protein. (29:17) So it's unable to dislodge the spike protein from the nicotine. (29:19) Oh, see, this is interesting. (29:21) So covidinstitute.org is telling you nicotine is not gonna work on long COVID.
Suzanne Mhmm.
Scott Benner That's interesting. (29:29) And if you go to a different
Suzanne website didn't know that. (29:33) Right?
Scott Benner No. (29:34) No. (29:34) I mean, honestly, like, yeah, I just went with what the lady on the like, the conversation. (29:38) Like, look. (29:38) I tried it, and it really helped me.
Scott Benner And I thought, well, for $30, we can get going and see.
Suzanne Yeah. (29:43) Yeah. (29:43) It's all
Scott Benner over the place. (29:45) Nicotine patches could help. (29:46) Nicotine patches won't help. (29:48) Blah blah blah. (29:49) The world is so interesting, isn't it?
Scott Benner Yeah.
Suzanne When I when I, was first dealing with the fatigue, everybody was tell all the doctors were telling me I was depressed, and that's why I was tired. (29:59) And so they started me on the tour of SSRIs and and I didn't have a good experience with those. (30:06) I took several and finally, I was like, I'm done with this. (30:09) And I'd read about this stuff called five HTP
Scott Benner Mhmm.
Suzanne In a magazine, and I thought, what the heck? (30:17) And I tried it, and it really helps with my mood.
Scott Benner Okay.
Suzanne It it really so, you know, it's like sometimes you're just like, I'm just gonna try this.
Scott Benner And Hey. (30:26) Listen. (30:26) When you're in your situation, I say why not?
Suzanne Yeah. (30:29) Yeah.
Scott Benner Yeah. (30:31) Because if it's not thyroid and, I mean, the SSRI thing, that's just what they do to ladies when they I know. (30:37) They have your complaints. (30:39) That's just the bull thing they do.
Suzanne That's that's why when I go to the doctor and they say, are you depressed? (30:45) I'm like, I'm good. (30:46) Just like, don't wanna
Scott Benner Now everything's fine.
Suzanne I'm I don't wanna go down that route.
Scott Benner I love chronic pain and fatigue. (30:53) Thank you. (30:53) Yeah. (30:54) Yeah. (30:54) And five HTP precursor to serotonin serotonin, it can increase serotonin or melatonin, help with mood calmness, pain regulation, sleep.
Scott Benner Yeah. (31:05) It's interesting. (31:05) Mood and anxiety. (31:06) Low thyroid function could be associated with lower serotonin signaling, so raising serotonin may help with low mood, irritability, anxiety, feeling mentally overwhelmed. (31:16) Interesting.
Suzanne Yeah. (31:18) Yeah.
Scott Benner Very good.
Suzanne So I under I'm I'm I'm I'm not adverse to just trying something.
Scott Benner Sure. (31:23) No. (31:23) It doesn't sound like it. (31:24) Yeah. (31:24) Now you were like, hey.
Scott Benner I heard of something in a magazine. (31:26) I'll swallow it.
Suzanne Yeah. (31:27) Exactly. (31:28) It
Scott Benner sounds crazy. (31:31) I mean, a little, but I think maybe one more generation of people living on the Internet, no one's gonna think of that oddly anymore. (31:38) You know what I mean?
Suzanne Like Right.
Scott Benner Yeah. (31:40) Because you and I are old enough to remember if somebody said something to you, you're like, that is crazy because you didn't know about it or couldn't talk to anybody else.
Suzanne Yeah. (31:48) Right. (31:49) Right. (31:49) Right.
Caregiving for an Aging Parent with T1D
Scott Benner How do you deal with the the diabetes? (31:53) Is it a pretty successful thing? (31:55) Is it a background thing for you, or is it a thing that even years later, you still struggle with?
Suzanne Well, here's the thing. (32:01) I I feel like when I was first diagnosed, I took it in stride. (32:06) Like, I it was a background thing.
Scott Benner Okay.
Suzanne You know? (32:10) I mean, like like you always say, you know, if you're gonna have diabetes, this is the time in the world to have it. (32:15) You know? (32:16) Like, we've got the tools. (32:18) You know, I was grateful to to be able to do finger sticks even at the beginning.
Suzanne And and right now, I I do a closed loop with tandem, and that that's been pretty good. (32:29) But the thing about it is now that I have chronic fatigue, it's it's just another burden. (32:37) Diabetes is like a burden. (32:39) And then now taking care of my mother with diabetes Yeah. (32:42) And and just everything from dealing with customer service to dealing with, you know, just the site changes and like, if I'm gonna go away I mean, this is a big thing right now.
Suzanne Like, I I was able to travel a couple times last year. (32:57) Mhmm. (32:57) I went for I used to go for, like, six weeks at a time because I don't I don't have a lot of money, and all my close friends are in Boston, so I'll just go there.
Scott Benner Yeah.
Suzanne But now I, you know, I I could only I went for first, I went for one week. (33:09) The second time, I went for, I think, two or three weeks. (33:13) And finding people to change her stuff was really hard. (33:18) And we live in a smallish city, and so just finding people to deal with that was was really, really difficult. (33:26) So now it's it's it's more it's it's more of a burden.
Scott Benner Okay. (33:31) Yeah. (33:31) Be because it's two people?
Suzanne Because it's two people and I have chronic fatigue.
Scott Benner And you have chronic yeah.
Suzanne And and also because just finding caregivers that like, my mom almost went into an independent living facility a couple months ago. (33:48) I talked to one of the administrators, I'm like, Well, the thing is are we gonna be able to have somebody that can help her? (33:55) Because she can't do her site changes now. (33:59) Yeah, she stopped being able to do that about seventeen months ago.
Scott Benner Mhmm.
Suzanne So I have to do all that for her. (34:06) And just to and the guy was like, oh, yeah. (34:08) We have a lot of people in her situation. (34:10) And then when I talked to the actual people that do it, they had no idea what to do with a pump, no idea not much idea about a CGM. (34:18) A lot of people there do wear CGMs, but they're able to do them themselves.
Suzanne And it it was just like, woah. (34:25) This is this is crazy.
Scott Benner I like when they're like, no. (34:27) We know all about it. (34:28) We mistreat people with type one diabetes all the time here.
Suzanne Yeah. (34:31) And and then when when it came down to it, they found somebody that could do it, but it was gonna cost about $560 a month just for somebody to come in for, you know, like, ten minutes and, like like, a few a couple of times a week.
Scott Benner Really? (34:47) And what what do you do? (34:48) Are you going over and helping her?
Suzanne Well, see, this was in a different town that I live in. (34:52) And I would I would eventually move there, but I'm I'm just not ready to pick up and move right now. (34:57) She had a friend there, and it would kinda be a fun place for her to be. (35:01) Like, she'd have a lot of of social interaction. (35:03) And so it was it wouldn't I wouldn't be able to just come over and do it.
Suzanne Mhmm. (35:09) Or at least for a while until I, you know, packed up and moved.
Scott Benner Is there a big, mental health component to this? (35:17) Like, do you feel like you're not helping her as much, or is it more of a strain on you? (35:22) Like, what's the the, I guess, the psychological impacts to your mom being in this situation?
Suzanne The cycle impact on me? (35:30) Yeah. (35:31) On you. (35:31) Yeah.
Scott Benner Do you feel like you're
Suzanne I yeah. (35:33) You know
Scott Benner what I mean?
Suzanne It's it's too much. (35:35) It's and and it's, actually, it's it's been amazing, though. (35:39) I'm I'm grateful, but it it has been a lot. (35:43) Like, it it's not even just that. (35:44) It's that I have to do all her financial stuff as well.
Suzanne And it's just it's just kind of and and I I have you know, I'm I'm wanting to to work on some music right now. (35:54) And so it's just it's just hard to find time to to, you know, balance everything. (35:58) And I and I teach a little bit as well. (36:01) So it's it's just kinda like I sometimes I feel like I'm just kinda circling the know?
Scott Benner Suzanne's like, listen. (36:07) I'm giving up. (36:08) This is what I'm this is what I would do. (36:09) Yeah. (36:10) Would just I'm here to tell you all.
Suzanne Yeah. (36:13) No. (36:13) I mean, it's just I'm and also, I'm I'm I'm kind of I'm kind of sick of of self care for myself, you know, just I have, a special diet and all and I'm just I'm just like, ugh. (36:24) You know? (36:24) Like
Scott Benner Too much to to to be thinking about constantly.
Suzanne Yeah. (36:28) It's just it's just kinda too much. (36:30) But but but my mom is a really delightful person, and so I'm grateful that I'm able and I I was just talking to a friend of mine this morning, and she reminded me that if I didn't have diabetes and I hadn't learned a whole lot about natural medicine, I wouldn't be able to help my mom the way that I have been.
Scott Benner Yeah. (36:47) I mean, there's high sides to all this, but it doesn't change what a burden it
Suzanne is. (36:50) No. (36:51) It doesn't. (36:51) It it doesn't. (36:52) It doesn't take that away.
Scott Benner Are you anxious?
Suzanne I can be, but I'm not usually, but I I can be.
Scott Benner Okay. (37:00) The burden of this is really about time and energy then?
Suzanne Yeah. (37:04) Yeah. (37:04) Okay.
Scott Benner Yeah. (37:05) You think if you had energy the way other people do, maybe it wouldn't feel the same to you?
Suzanne Oh, yeah. (37:10) Oh, yeah.
Scott Benner Okay. (37:11) Yeah. (37:11) Because you do seem excited to help her. (37:13) Actually, like, happy to help her, I guess.
Suzanne Yeah. (37:16) Well, in most days, yeah. (37:18) A
Scott Benner lot. (37:18) Yeah.
Suzanne Yeah. (37:19) It's it's like, you know, some days when I've like like, my pump has run out and I've had to do like, it it only takes, like, five, ten minutes, but it's like and then then hers will run out or her her pump will, like, malfunction or, you know, just something like that, and you gotta call customer service and da da da. (37:35) You know, it all happens at the same time. (37:37) And
Scott Benner I just had to go to the pharmacy yesterday, and they messed everything up so much that I got home and nothing was the way it was supposed to be, and I had to go back. (37:46) And as I left the house, I said to my wife, I feel capable of dealing with this, but just in case things go sideways, I'll see you at the police station.
Suzanne And I and I and I was
Scott Benner I was on my way out the door again. (37:58) I know how you feel.
Suzanne Exactly. (38:00) Yeah.
Scott Benner Yeah. (38:01) Ex Do you have brothers or sisters?
Suzanne I do. (38:05) I have a brother.
Scott Benner Is he not helpful?
Suzanne He's got a lot going on. (38:09) He's got three adult kids in three different states, and he kinda leaves things to me.
Scott Benner The answer is yes. (38:14) He's not helpful?
Suzanne Okay. (38:18) I you know You're so polite, Suzette. (38:22) I you're you're fine. (38:22) Ask him for something if I ask him for something, he'll he'll try to do it. (38:27) But he's not like, oh, how can I, you know, how can I do this?
Suzanne How can I help?
Scott Benner That's how I describe my marriage after thirty years.
Suzanne If I ask her to do something, she'll try to do it. (38:35) No.
Scott Benner I hear what you're saying. (38:37) Do you and your mom ever look at each other and are like, look at us in this thing with this diabetes? (38:41) Do you guys talk about it?
Suzanne Yeah. (38:43) Yeah. (38:44) We do.
Scott Benner What's her takeaway of a life with diabetes, do you think?
Suzanne Well okay. (38:49) She's only had it for, like, since she's been in her fifties.
Scott Benner That's a long time.
Suzanne It is. (38:54) Is long
Scott Benner time. (38:55) Yeah.
Suzanne Yeah. (38:55) I think so so she was probably I guess she was probably, like, 55 maybe when she was so so I guess
Scott Benner Thirty years?
Suzanne Yeah. (39:02) So she's had it for thirty years. (39:03) I've had it for thirty four. (39:05) So yeah. (39:08) What's her take?
Suzanne I don't know what her take is.
Scott Benner Does she seem did she seem burdened by it prior to not being able to take care of herself?
Suzanne You know, she you know, it's funny because I got it first. (39:22) And so she was just kinda she just kinda and she she was able to diagnose herself by kinda looking at me with some of the symptoms. (39:30) Mhmm. (39:31) So I think she just thought I was kind of like a a a good example to her. (39:36) And so she was just like, well, Suzanne can do it.
Suzanne I can do it kind of thing.
Scott Benner Yeah. (39:40) She just went on her way and did it. (39:41) Okay. (39:41) Yeah. (39:41) Hey.
Overmedication vs. Dementia
Scott Benner Why did you think she had dementia, but she didn't?
Suzanne Oh, well okay. (39:45) So she thought she had dementia. (39:47) Okay. (39:48) And well, for what there was a certain political, person that, she would look at the TV and go, I have what he has. (40:00) And because of look in his on his face.
Suzanne One day, she drove over to my house. (40:05) I was gonna help her with something with her insulin pump.
Scott Benner Okay.
Suzanne And in the course of the conversation, it came out that she didn't feel safe living alone anymore. (40:14) She didn't feel safe driving anymore, and she didn't wanna drive anyway. (40:19) And I was like, well, you can stay here. (40:21) I mean, I didn't know what else to say. (40:22) Like, you can stay here tonight.
Suzanne You know? (40:24) A week and a half into that, and she had she had scheduled herself for a cognitive evaluation.
Scott Benner Really? (40:31) How old and what age did this happen?
Suzanne She was, like, 83.
Scott Benner Oh, just a couple years ago. (40:36) Okay.
Suzanne Yeah. (40:37) Yeah. (40:37) Yeah. (40:37) This is, like, seven. (40:38) Yeah.
Suzanne Like yeah.
Scott Benner Okay.
Suzanne We finally well, and then a week and a half of her living with me, she broke her arm.
Scott Benner Oh my gosh.
Suzanne Fell and broke her arm. (40:47) So that was really hard. (40:49) That was talk about burden. (40:51) That was really hard. (40:52) Yeah.
Suzanne You know? (40:53) Like, I had to help her with everything. (40:54) So she got her cognitive evaluation in, like, October year, and they do this little test called a slums test. (41:03) I it's Saint Louis something. (41:05) It's like this little cursory, you know, cognitive evaluation, and she got 13 out of 30 on it.
Suzanne I'm kind of about natural medicine when you can be. (41:16) I mean, I would never go a day without my insulin or or, you know, like, there's a place for but but I I also think a lot of things are overprescribed. (41:25) The the doctor said, oh, let's hold she was on three blood pressure medications.
Scott Benner Okay.
Suzanne And so I took her off two of those, and now she only takes the other one once a day where she was taking it twice a day and her blood pressure's fine. (41:40) I took her off a statin drug and she was shuffling her feet. (41:45) She does not shuffle her feet anymore. (41:47) When she moved in with me, she was not interested in food. (41:51) She was not interested in reading, the things that she loves.
Suzanne She just didn't care. (41:55) And over the course of time, she she got another slums test in March, and she got 19 out of 30. (42:07) And then last October, she got another one. (42:09) She got 27 out of 30, which is pretty much normal.
Scott Benner Is this the blood pressure meant? (42:14) I mean, first of all, this is, this might sound crazy to people, but this is not incredibly uncommon for older people to go to a doctor. (42:20) They put her on a blood pressure medication. (42:22) Then they go to another doctor. (42:24) They add a med, but don't take the other one away.
Scott Benner Yeah. (42:26) Yeah.
Suzanne Yeah. (42:27) Exactly.
Scott Benner Right.
Suzanne So I I think it was just maybe she was just over medicated. (42:32) Yeah. (42:32) And and I I also, you know, I I help her with her food, you know, and I help manage her diabetes. (42:38) Like, her her a one c's have been great lately. (42:40) Like, they've been, like, six something.
Scott Benner Wow. (42:43) Good for you. (42:43) I'm sorry. (42:44) Does this whole process of being with her make you start worrying about yourself as an older? (42:49) Because you Oh, yeah.
Scott Benner Because you don't have a you when you get older.
Suzanne Exactly. (42:53) Yeah. (42:53) No. (42:53) I don't. (42:54) And I yeah.
Suzanne And I don't have kids. (42:55) And, yeah, I don't have kids to take care of me. (42:57) I I yeah. (42:58) So exactly. (43:00) Yeah.
Suzanne It definite definitely.
Scott Benner To answer your question, yes, I'm scared out of my mind. (43:04) Thank you.
Suzanne Yeah.
Scott Benner Well, yeah, no. (43:05) I hear you. (43:06) If you left her to her own, like, what would stop her from taking good care of herself? (43:10) Is it dexterity? (43:11) Is it clarity?
Scott Benner Like, what would stop her from taking care of her diabetes by herself?
Suzanne Well, I think she said the with the pump, it's like her eyesight. (43:21) Mhmm. (43:21) You know, like, being able to see the you know? (43:24) And she does wear glasses, but, you know, like, her eyesight kinda, changes. (43:27) She keeps all her glasses because she had a doctor tell her, keep all your glasses because your eyesight will change even if you get a new prescription.
Suzanne But still, for her to living alone was just hard for her. (43:41) Sure. (43:41) I mean, we were in touch. (43:42) Like, we we spent time together. (43:44) It wasn't like like I just left her out there on the farm.
Suzanne But, like, we ate together frequently.
Scott Benner And Is it is it strange for you to still be this in touch with your mom, or do you like it?
Suzanne I really liked living alone. (43:57) I really did. (43:59) I really did. (44:00) But I I'm like, I don't know. (44:02) Like, I'm I'm grateful.
Suzanne You know, I think it would be great. (44:05) She may get another apartment in this building. (44:08) That might be good. (44:09) I'm I'm not sure if I wanna stay in this building. (44:11) I want some green space too.
Scott Benner Okay.
Suzanne Fortunately, I have an extra bedroom. (44:15) Like, what if I didn't? (44:16) Yeah. (44:16) You'd be on the sofa. (44:17) Your mom be sleeping in your bed.
Suzanne Yeah. (44:19) Yeah. (44:19) Exactly. (44:20) Exactly. (44:21) So You live in Iowa.
Suzanne Have you tried meth for all these problems, or
Scott Benner is that not something you've gotten into yet?
Suzanne Meth. (44:26) Why is why is meth an Iowa thing?
Scott Benner I don't
Suzanne know, isn't it? (44:30) I don't
Scott Benner Listen. (44:33) If I'm just gonna generalize and you guys would've hold me down to all the details, this is gonna be a problem making this podcast. (44:38) Okay? (44:39) Okay.
Suzanne Yeah. (44:41) Well, you need a fact checker.
Scott Benner Well, let's not get crazy. (44:44) I guess I was leading into, like, how did you avoid medicating yourself other ways, like, through your life with all this? (44:52) Like, how come like, you're not a drinker. (44:54) Right? (44:54) You don't get high?
Scott Benner Like, why do you not
Suzanne Well, a friend's prayer, a lot of prayer.
Scott Benner Yeah.
Suzanne A lot of friends that that, you know, are committed to the same ethic. (45:06) Yeah. (45:06) But most of my close friends don't live in my state.
Scott Benner They're in Boston?
Suzanne Yeah. (45:11) They're in Boston or in Virginia or Texas or
Scott Benner Yeah. (45:15) Yeah. (45:15) People move around. (45:16) What do you do for a living?
Suzanne Most of my income is disability, but I still teach a little bit of music. (45:21) Mhmm. (45:22) And I'm learning music production.
Scott Benner Oh, nice. (45:25) Throughout your adult life, it's been mostly disability?
Suzanne No. (45:29) No. (45:29) I I I got on disability when I moved home to Iowa.
Scott Benner Okay.
Suzanne But I Okay. (45:34) When I was in Boston, I worked for a nonprofit, and I went around to different schools and taught music and produced big shows with kids.
Scott Benner And Oh, wow.
Suzanne So I I look back, and I'm like, how did I do that? (45:44) I mean, I I still in Boston for, like, ten years with with chronic fatigue at least. (45:51) Yeah. (45:51) Yeah.
Scott Benner Just kinda power do you feel like you were powering through it?
Suzanne Oh, yeah. (45:55) Yeah. (45:55) I mean and I had to pace. (45:57) Like, I couldn't I couldn't work enough. (45:59) Fortunately, I I worked at a job where I contracted, So you didn't you weren't there, you know, five days a week.
Suzanne You would maybe be at some places two days a week and and maybe not for the whole day. (46:12) So but I would I was not able to keep up enough contracts to really
Scott Benner Float the whole thing.
Suzanne Yeah. (46:19) Yeah. (46:19) Yeah. (46:19) Well, that's Yeah.
Scott Benner It really is just terrible to be impacted so much by something like that.
Suzanne Right.
Scott Benner Yeah.
Suzanne So I right now, I have six private students. (46:28) And last month, I subbed online for a colleague, and it was just three students. (46:33) Absolutely delightful, but by the end of the month, I was a mess. (46:37) Just three like, it was about an hour and a half of extra time at you know?
Scott Benner And it exhausted you.
Suzanne And I was a mess, yeah, by the end of the month. (46:45) And I'm just like, ugh. (46:47) Yeah. (46:48) So and and I I love teaching. (46:50) I absolutely love it, but I just have to really pace myself.
Scott Benner Yeah. (46:53) How long does it take you to bounce back when once you get, like, kind of, like, not burned out is the wrong word, once you get exhausted?
Suzanne It depends. (47:01) Like, sometimes it'll take a day. (47:03) Sometimes it'll take, like okay. (47:05) So I was subbing for my friend in, like, towards the end well, anyway, like, the whole week after, I had, like, one and a half I counted. (47:16) I had, like, one and a half good days that whole next week.
Scott Benner Like,
Suzanne it was it was a mess. (47:22) Describe to people the difference between a good day and a bad day. (47:24) A bad day, you feel like there's this magnet pulling you towards your bed. (47:29) Like, yesterday was Saturday was kind of a bad day, and I I I actually dragged myself out. (47:35) One of my students was in a musical, and I dragged myself out and went to it.
Suzanne But the whole time, I was just really like, I just wanted to be in my bed and and just not having to interact with people, and and I can't explain it.
Scott Benner But not depression. (47:52) It's not you don't feel depressed. (47:53) You feel exhausted. (47:54) You
Suzanne you kinda do, but you know it's a more of a physiological thing.
Scott Benner Mhmm. (48:00) So you need to, like, get ramped up somehow. (48:03) Like, yeah, like, your battery your battery is low.
Suzanne But that makes it worse. (48:08) Like, when you ramp yourself up, it's like you're using energy that you don't have, and so it kinda makes things worse.
Scott Benner Oh, you get, like, an adrenaline crash afterwards?
Suzanne Yes. (48:16) Yes.
Scott Benner Okay. (48:18) Yeah. (48:18) Do if you do ramp yourself up for something, then the you pay you pay harder at the end. (48:23) You pay.
Suzanne You you gotta pay the piper. (48:25) You you yeah. (48:26) That's the hard thing about it.
Scott Benner Nothing's ever helped. (48:30) There's not a moment where you thought, like, as crazy as it sounds, like, you know, the the the oddest thing felt like it had an impact for you?
Suzanne Not permanently. (48:39) No. (48:40) And and I'm very quick to pronounce myself cured if I have a good day.
Scott Benner I'm like,
Suzanne this has all been in my head all these years. (48:47) It's it's
Scott Benner Figured it out. (48:48) It's green beans. (48:49) Yeah.
Suzanne It's all been in my head. (48:51) So there's nothing that's that's like, oh, yeah. (48:55) I'm consistently friends paid for me to do an adrenal program and lots of different supplements. (49:01) I I felt like I was I was very sensitive to a lot of the supplements even you you know? (49:07) And they encourage you, like, take it really, really, really, really slow.
Scott Benner You know? (49:12) How about your iron? (49:13) Do do a full iron panel ever?
Suzanne You know, I used to have low iron when I first started all this. (49:19) And I would but that didn't even help. (49:21) I mean, I would take iron, and it didn't
Scott Benner So you had a moment where somebody's like, oh, you're anemic. (49:26) This is gonna help you, and they jacked you back up, and then nothing changed? (49:29) Yeah. (49:30) How did you get your iron back up? (49:32) They give you infusions?
Suzanne No. (49:34) They just tablets.
Scott Benner Yeah. (49:36) Ew.
Suzanne And then I think when I went through menopause, my iron was fine again. (49:41) You know? (49:41) Okay. (49:42) I I haven't had problems with iron, but I I probably should have my doctor test that this this I'll I'll see her at the end of the month.
Scott Benner Yeah. (49:50) Make sure they test your ferritin too.
Suzanne Yeah. (49:53) No. (49:53) She's she's a really smart doctor. (49:55) Yeah. (49:55) And she she doesn't do the just cursory stuff.
Scott Benner Suzanne, listen. (49:59) I'm always interested when people say stuff like this. (50:01) Like, she's
Suzanne a really great doctor. (50:03) You have a lot
Scott Benner of problems. (50:04) I don't see her fixing any of them.
Suzanne Yeah. (50:06) I know. (50:07) I know.
Finding Hope and Coping Mechanisms
Scott Benner She's I I know. (50:08) So you mean she's thoughtful, thinks outside of the box, just trying to help you in ways other people wouldn't, etcetera.
Suzanne That.
Scott Benner But she hasn't gotten to the, like, the the promised land where she said something that ended up being valuable. (50:20) Do you think there's nothing that will help?
Suzanne I don't know. (50:23) I I mean, I I don't know. (50:25) I hope there is.
Scott Benner But What keeps you looking? (50:29) Like, what what keeps you motivated to keep hoping and, like, thinking like, you know what I mean? (50:33) Like, where's the hope come from that makes you think, like, I'm cured. (50:36) I figured it out. (50:36) Like, where do you get that from?
Suzanne I I don't know if it's just a hope for a cure, but I don't know. (50:41) There there there's a fragment of a psalm that says, why are you downcast, oh my soul? (50:46) Why are you so disturbed within me? (50:48) Put your hope in God for I will yet praise him. (50:51) And I just I you know, whether I get better or not, I know that God is giving me something to hope for, whether it's in this life or the next.
Suzanne I don't I don't that's all I can say, really.
Scott Benner No. (51:03) You find you find your hope through faith.
Suzanne Yes. (51:05) Yeah. (51:05) Yeah.
Scott Benner Well, listen. (51:07) I I I would think you you deserve it wherever you can get it from, so that's awesome that you found it somewhere. (51:12) Because I I can imagine people would be I mean, this is a thing I think about a lot. (51:16) Right? (51:17) Like, with, you know, the people around me and the people that listen to this podcast, you know, lot of you are on difficult paths that don't always end with, like, some successful outcome.
Scott Benner And you still have to get up and do it again and, you know, you have bouts of time where you feel better and worse and, you know, like, how do you keep going when the worst times come and how do you enjoy your life when the good times are there without thinking, oh, it's just gonna get bad again? (51:43) It's a lot. (51:44) You know?
Suzanne It is.
Scott Benner Yeah. (51:45) I mean, there's a lot of you can see even with, like like, you've you've mentioned money a number of times. (51:51) Like, I don't have money for that or anything. (51:53) Like, you know, you're watching, what, Selena Gomez out in the world. (51:56) Right?
Scott Benner She has, what, lupus or something like that? (51:58) Like, it's
Suzanne She's got her own she's got her own Oreo too. (52:01) Did you notice that?
Scott Benner She has her own what?
Suzanne Oreo. (52:04) I I was in the grocery store the other day. (52:06) Yes. (52:07) I was in the grocery store the other day, and they had Selena Gomez Oreos, and I'm like
Scott Benner Well, I didn't know that, but that makes my point better. (52:13) Like, she's got
Suzanne I guess you've made it when you've got your own Oreo.
Scott Benner You have you when you have Oreo money to pay for your treatments is what I'm saying is you're getting great, like you know, you're probably getting cutting edge help, and I've still seen I've seen her struggle over the last number of years pretty heartily.
Suzanne I didn't realize she had lupus.
Scott Benner Is that what she oh, listen. (52:30) I might have made that up. (52:31) Hold on a second.
Suzanne She just said that. (52:33) I I mean, I'm just I'm not familiar with her music or and I know she's a she's a, like, a pop star, but I don't I'm not all that familiar with her music.
Scott Benner Hold on a second. (52:42) Let me just make sure I'm right about that. (52:45) I didn't just give her something.
Suzanne I think said you said yeah.
Scott Benner She has Do you not watch Only Murders in the Building?
Suzanne No. (52:52) Oh my goodness.
Scott Benner Oh, okay. (52:53) So so she does have lupus. (52:55) She's had a kidney transplant because of kidney failure. (52:58) Woah. (52:59) 2020, she publicly revealed she has bipolar disorder, anxiety, depression.
Scott Benner Wow. (53:05) But the lupus specifically like, there's a lot of, like so if you watch Only Murders in the Building, you'll, like, watch a season of it, and there's a version of Selena Gomez that's acting in it. (53:16) And then the next season of it, she looks like she might weigh forty or fifty pounds more. (53:21) And then in the next season, it's gone again. (53:23) And I think that's all the lupus and the inflammation and all that stuff.
Scott Benner Wow. (53:27) My point was is that, like, when you've got her money and you still can't overcome stuff like this
Suzanne Exactly. (53:34) Yeah.
Scott Benner Yeah. (53:34) Yeah.
Suzanne Like, it's maybe it's not a matter of affording being able to afford treatment. (53:40) It's just life.
Scott Benner Yeah. (53:42) But maybe this is just and you're 62. (53:45) Like, so I think we're forgetting that because, again, you have a very youthful voice and way about you. (53:49) But, like, at 62 years old and you've been at this for for as long as you have been, I mean, at what point do you just say to yourself without being sad, this is it? (54:00) Like, this is my role.
Scott Benner Like, so just I'm gonna do the best with it I can and stop, like you know what I mean?
Suzanne Well, I mean, sometimes that's why I'm not like, oh, let's try this. (54:09) Let's try this. (54:10) Because I'm just like, I just wanna I just wanna wake up and and work on a song or something or, you know, like Yes. (54:15) Just do my thing and and not have to, like, constantly be thinking about, you know. (54:20) I had kidney issues a couple years ago.
Suzanne I was able to, get back to normal kidney function. (54:26) So, like like, you talked about Selena having Mhmm. (54:29) Like, it's just it's just always something. (54:30) I feel like I'm playing whack a mole. (54:32) You know?
Suzanne It's like Let's dig into that for
Scott Benner a second because I think that's really interesting. (54:35) The idea of, like, you you're trying to live. (54:37) It probably feels like you're always in college. (54:40) Meaning, as soon as I do these things, complete these tasks, then I get to go live my life.
Suzanne Yeah. (54:46) Yeah.
Scott Benner Right? (54:47) Except that never stops happening.
Suzanne Yeah. (54:49) Exactly.
Scott Benner You don't go to therapy?
Suzanne I had a therapist for a while. (54:53) I didn't feel like she was helping. (54:55) Ugh. (54:55) I I need to find another one. (54:58) But but who even has time to go?
Scott Benner You're like, when am I doing that?
Suzanne Yeah. (55:02) Yeah. (55:02) Exact this sounds like another thing, and I'm like, like, I'm so burned out on self care.
Scott Benner Like, I'm just I guess isn't that funny?
Suzanne Like yeah.
Scott Benner Seriously, there's a real conversation in there because if self care, which is the thing that's supposed to elevate you and help you do better, is the thing that's burning you out, then where's the tipping point between the value and and the harm?
Suzanne That that's why I'm trying to figure out.
Scott Benner Oh, you thought I was gonna help with that?
Suzanne I not necessarily, but
Scott Benner I can't even remember to put my face cream on. (55:34) Arden's like, you're wrinkly. (55:35) If you just use cream, I'm like, how am I supposed to remember to do this? (55:37) She goes, it's on the sink. (55:39) She's like she's like, when you get
Suzanne out of the shower, rub some of it on your hands and put it on your face.
Scott Benner And I go, I don't It seems like a lot. (55:46) So
Suzanne Yeah. (55:47) No. (55:47) There's there's so many crazy things I have to do to just keep going, and I'm like, ugh. (55:52) Yeah.
Scott Benner Yeah. (55:52) No. (55:53) I think that's important. (55:54) The I'm glad that came up, actually. (55:56) Yeah.
Scott Benner Yeah. (55:57) Because everybody's in that I think everyone to some level or another is in that space where they're trying to find the balance between living and staying alive. (56:06) Right? (56:07) Like, you're trying to, like, like, how do I stay healthy without giving away every ounce of who I am to that process? (56:14) Because then am I not then I don't have time for anything else.
Suzanne Exactly. (56:18) Exactly. (56:19) I'm I'm trying to start releasing music, and I I released my first song last year. (56:24) Oh. (56:25) And I've got songs in the pipeline, and I'm just like you know, it's just trying to figure out how to
Scott Benner make kind of music? (56:32) Mumble rap? (56:32) What do you do?
Suzanne I'm I'm I'm pretty eclectic as far as genres. (56:39) Most most of it is is Christian music, but styles are are fairly eclectic.
Scott Benner Mhmm. (56:44) How do you release it? (56:45) Like, through, like
Suzanne Like, YouTube. (56:50) There's a whole process, and I and I've done it once. (56:52) Now I'll have to, like, revisit how to do it again once I get another song ready.
Scott Benner Right. (56:58) How long does it take to put a song together?
Suzanne It depends. (57:02) I guess it depends if, like like, I'm new with the production process.
Scott Benner Mhmm.
Suzanne And it took me, like, from, like, August through April to do my first one. (57:14) But but other people you know, it's just with everything else going on in my life, like, that was it it just took a lot longer than it was supposed to.
Scott Benner Yeah. (57:23) Well, right. (57:23) Because every everything is extra. (57:26) Right?
Suzanne Right. (57:27) Right. (57:28) Like, I I try to work in little fifteen, twenty minute increments. (57:32) And then, you know, when I when I finally put put it out, it took, like like, there was hours of time just, you know, trying to work through, you know, like, the distributor and figuring out all that stuff online. (57:44) I I went through a, like, a accelerator mentorship process to do that.
Suzanne But even with that, it was it took a it took some time.
Scott Benner I'm sorry. (57:53) I have to do something here. (57:54) This is we don't allow political, like, posts on the Facebook group. (57:58) Right? (57:59) Because it's I know it feels like a left turn person.
Suzanne There's no you don't have
Scott Benner to
Suzanne explain
Scott Benner it. (58:03) Because well, because it just it'll devolve no matter what. (58:06) And people like to put something up that's very political and then say, this is not political.
Suzanne Exactly.
Scott Benner I'm putting it up there because it's very important for people with diabetes. (58:18) And I'm like, it is incredibly important for people with diabetes. (58:21) It doesn't make it not political, or it doesn't mean it's not going to be five minutes from now when everybody start yelling at each other about it. (58:28) And this is a this is a community for people to support each other with their diabetes, not for them to argue about, you know, politics.
Suzanne So Yeah. (58:36) Yeah. (58:36) No. (58:36) You don't have to explain that to me.
Scott Benner Well, yeah. (58:38) It's nice.
Suzanne It's the world we live in. (58:40) My my yeah.
Scott Benner It's my favorite thing that people do. (58:43) They're like, okay. (58:44) Listen. (58:45) This isn't political, so don't talk about it that way. (58:48) You know what politician really sucks because they're not helping people with diabetes?
Scott Benner I'm
Suzanne like Yeah.
Scott Benner Yeah. (58:54) That's political.
Suzanne Yeah.
Scott Benner It's very funny.
Suzanne Yeah. (58:58) Just Yeah. (58:58) Put a a popcorn GIF on there.
Scott Benner I don't know. (59:01) I'm not getting I No. (59:03) My group runs very well for a very specific reason, and it's we politics, religion, pretty much, you know, we we we don't go down those roads. (59:12) And it's tough in times like this. (59:14) Like, I don't have any trouble talking about it here, it's tough in times like this.
Scott Benner There's a lot of people who wanna stick up for islet cell legislation and everything, and I'm I'm with them. (59:22) I think that's great. (59:23) But I you can't start making a pod a post about it in the Facebook group. (59:27) It doesn't work that way. (59:28) So Wow.
Scott Benner Yeah. (59:30) It sucks. (59:30) It's a weird line to have to draw when you're me. (59:32) And then I get yelled at for not being something. (59:35) You know what I mean?
Scott Benner Yeah. (59:36) Yeah.
Suzanne Right. (59:37) Well, we we have that dynamic also in my family too. (59:40) So it, like, it it does hasn't really helped. (59:44) There's some political spectacles in my family. (59:46) So And
Scott Benner and then what happens? (59:48) It it gets in the in the way of, like, personal relationships
Suzanne and Yes. (59:53) Yeah. (59:53) Yes.
Scott Benner Well, that's my point. (59:55) If none of you knew each other's politics, you wouldn't be having any of those other problems.
Suzanne So Exactly. (1:00:00) Exactly.
Scott Benner At the very least, in a Facebook group, we're gonna avoid it. (1:00:04) That's pretty much
Suzanne it. (1:00:04) Yeah.
Scott Benner Okay. (1:00:05) Is there anything we haven't talked about that we should have? (1:00:07) Anything? (1:00:08) Because I don't I don't wanna shortchange on and
Suzanne make sure. (1:00:10) Tons of stuff I'd love to talk about, but but let me just say my mom so she she had a formal evaluation with her dementia Yeah. (1:00:18) In January, and she it's so it's March now. (1:00:22) And they they decided she doesn't have dementia because she's just a normal 85 year old. (1:00:27) But I think she's she's transformed a lot since she's been living with me.
Suzanne And she so now she loves to read. (1:00:34) She can walk to the light. (1:00:35) She doesn't shuffle her feet anymore. (1:00:37) Yeah. (1:00:37) She can walk to the library, buy a book, or check out a book, or there's a little bookstore over there, and she she prefers buying a book.
Suzanne And so, like, she's she's really transformed, but it's still like, I wish I had others that could care for her and her diabetes.
Scott Benner Yeah.
Suzanne That would make my life, little little easier.
Scott Benner Mahersh too, maybe. (1:01:00) I'm sure she has some level of guilt around having you take care of her.
Suzanne Yeah. (1:01:05) Yeah. (1:01:05) She's on Medtronic closed loop, and the CGM right now that we're using is a little bit complicated as far as the what how to how to
Scott Benner Is it the one that recharges? (1:01:18) Like, you have to plug it in sometimes?
Suzanne Yeah. (1:01:20) You just plug that. (1:01:21) But but also the procedure of putting it on is a little bit crazy.
Scott Benner They have the new one.
Suzanne I know. (1:01:27) I know. (1:01:28) So they the her doctor has already ordered that. (1:01:31) So but we just got a shipment of the old one. (1:01:33) So when we go work through that, we'll we'll start with the new one.
Scott Benner How many is in the shipment of the older model?
Suzanne Three months worth. (1:01:41) Jesus. (1:01:42) Yeah. (1:01:43) She just called them up and
Scott Benner say say it didn't come. (1:01:45) And and yeah.
Suzanne I know. (1:01:47) I mean, we we might be able to start earlier and that I probably will if I decide to travel soon. (1:01:53) Like, sometimes I'm just too tired, but I wanna start training her to redo her infusions to to be able to put on her own infusion set. (1:02:02) But sometimes her brain will glitch a little bit, so it can it can be one time when I was traveling, she was like, oh, yeah. (1:02:09) I I she I had to take a shot, and I was like, took the whole syringe, you know, for three units.
Suzanne I'm like, mom, you put in 30 units. (1:02:17) She didn't do three units. (1:02:19) Yeah. (1:02:20) Jeez. (1:02:20) So she was okay.
Suzanne She was able to eat enough to get through it, but so there's you know, like, it's it's not like, she she doesn't have dementia, and I don't worry about her doing something crazy like wandering, but it's still she probably shouldn't be alone for for too long.
Scott Benner No. (1:02:38) I hear you. (1:02:38) I I mean, my mom lived into her early eighties, and there's just parts of being that age that are just come with being that age. (1:02:46) Like, you know, my mom had a a cancer at the end of her life, so there's, like, some scans that she got done. (1:02:51) And I remember, you know, they did a brain like, a brain scan.
Scott Benner And, you know, just looking at the report, just, you know, the way the report is written, it said something about, like, frontal lobe deterioration equivalent with age. (1:03:06) Yeah. (1:03:07) And you think, oh, that's not a thing you think about when you're younger. (1:03:11) Yeah. (1:03:11) You know?
Scott Benner Yeah. (1:03:12) So
Suzanne But, you know, our bodies aren't meant to well, I mean, they were meant to last forever, but they don't, and it's part of life.
Scott Benner Yeah. (1:03:20) No. (1:03:21) It it really is. (1:03:22) So she's experiencing things that are just commiserate with being her age. (1:03:26) Yes.
Scott Benner Yeah. (1:03:27) Yeah. (1:03:27) And then having to deal with diabetes on top of all that.
Suzanne Mhmm.
Scott Benner Yeah. (1:03:32) Well, she's very lucky to have you. (1:03:33) That's for certain.
Suzanne I'm lucky to have her. (1:03:35) Oh oh, the other thing too is she she does a lot of cooking now. (1:03:39) Like, she didn't care about food anymore. (1:03:41) Now she on the days I work, she makes dinner. (1:03:44) She does all the dishes.
Suzanne She does a lot of the laundry. (1:03:47) You know? (1:03:47) So it's she's been great.
Scott Benner Oh, let's go. (1:03:49) That's awesome. (1:03:50) I'll take her here if she's gonna cook and clean. (1:03:54) Ship her over. (1:03:55) I'll take care of her diabetes.
Scott Benner I have no trouble.
Suzanne Yeah. (1:03:58) Hey. (1:03:58) There's an idea. (1:03:59) Next time I travel
Scott Benner If the end of this podcast was just me taking on older people with type one diabetes to get free cooking and cleaning out of them?
Suzanne Not not a not a bad strategy. (1:04:10) Not a
Scott Benner I don't know.
Suzanne She makes a she makes a really good pork chop. (1:04:15) I'll tell you. (1:04:16) Yes. (1:04:16) It
Scott Benner might be cheaper for me to just, like, hire a cooker than Yeah. (1:04:22) Than to take care of a person in the eighties.
Suzanne That's true.
Scott Benner Boy, that's some
Suzanne but you have a really interesting story.
Scott Benner Is there any did we miss anything that you think really solidifies your story, or do you think we hit the big parts?
Suzanne Nothing that necessarily you know, the lots of lots of all kinds of things, you know, that or I I just thought it was really interesting that I was diagnosed in Boston. (1:04:42) That was kind of a cool thing because of access to Jocelyn. (1:04:46) I worked at Camp Jocelyn for a summer. (1:04:49) Just lots of lots of little different little things, but nothing, you know, super.
Scott Benner You know, you've had touch points with with that. (1:04:55) I mean, there's a lot of research in hospitals in Boston for sure.
Suzanne Yeah. (1:04:58) I remember when the DCC ten first came out and going to a a big thing at a hotel where they announced the, you know, the findings of the DCC 10. (1:05:08) And I and I was very newly diagnosed at the time, so that was, like, a really good way to set my mind. (1:05:15) Like, okay. (1:05:16) Self care really does does make a difference.
Scott Benner Yeah. (1:05:20) I I hear you. (1:05:21) So tell people a little more about it, the DCC 10.
Suzanne Well, d c c 10, it was this big study that they did to find out if if, you know, the way you cared for yourself would make a difference in in long term complications.
Scott Benner Okay. (1:05:36) And? (1:05:36) And and
Suzanne What did they come up with? (1:05:39) Well, I thought she I thought that you've mentioned it before on the podcast.
Scott Benner Have I? (1:05:42) I mean, honestly, you heard me earlier say that I really don't know a lot about what I'm doing. (1:05:46) So go ahead.
Suzanne Heard it. (1:05:47) I've heard you meant but it but, yes, absolutely. (1:05:50) You know, like keeping your a one c down, keeping your blood sugars normal as possible. (1:05:55) Yes. (1:05:56) It it it really does you know, it's it's not like a foregone conclusion that, oh, I have diabetes, so, of course, I'm gonna have all this litany of stuff.
Scott Benner Right.
Suzanne So, yeah, it was it was a nice way to, you know, have my mindset at the the beginning of the of but but your podcast really helped too. (1:06:13) Like, I was kind of like, when I first moved home, I was just I was tired. (1:06:17) I was looking to for stuff to listen to when I was, you know, resting, and I was like, I wonder if there's any diabetes podcasts out there. (1:06:25) Well, yeah. (1:06:25) Yeah.
Suzanne The one
Scott Benner thing I feel sad about, in our interview today and that I would like to return to before we say goodbye is that before we started recording, you were super excited to talk to me. (1:06:36) And then that love and adoration did not come out with as vociferously as it was coming out before we were being recorded. (1:06:43) So, do you wanna tell all the people why this is such a special moment?
Suzanne Oh. (1:06:47) Oh.
Scott Benner Why am I so great? (1:06:48) Tell everybody that at the end, Suzanne.
Suzanne Go ahead. (1:06:50) Mean, I just I just I think I opened I said, I'm talking to the Scott Benner. (1:06:54) You know, I I I felt like I feel like I know you because I've listened to the podcast so much. (1:06:59) You know? (1:07:00) Like like, it's funny when when you listen to or read an author, you think you know them, but you don't really.
Suzanne But but, you know, it's like, wow. (1:07:07) You know? (1:07:07) I mean but, yeah, you you've, you know, just I I think you've helped me. (1:07:12) You've helped a lot of people.
Scott Benner Oh, well, that's very nice. (1:07:14) How how do you think the podcast has helped you mostly?
Suzanne I think a lot of the, like, the practicals try I can't even think of specifics, but I know when I was first started listening, just a lot of the practicals and and and I feel like you gave me permission to not have to write everything down. (1:07:33) Oh, really? (1:07:34) You know, they yeah. (1:07:35) Like, they they were like, oh, you have to write all your blood sugars down, and you have to write down all your carbs and count them all exactly. (1:07:42) And I you know?
Suzanne And maybe I'd do better if I did that, but it just I just never did well with all that stuff. (1:07:48) And, you know, like I like we were talking about trying to live your life Like,
Scott Benner I who
Suzanne who has time to, like, write all down everything they eat and measure it just exactly? (1:07:59) And Well, what do you mean you could do better? (1:08:01) Like, what what are your outcomes like right now?
Scott Benner I mean, your mom's got an a grade a one c at 85. (1:08:06) So what's yours?
Suzanne I'm I'm like I hover around, like, seven one, seven six nine.
Scott Benner Mhmm.
Suzanne I mean, you know, probably could be better. (1:08:14) Sometimes I get insulin resistant in the mornings usually, and I I probably need to just tweak something in my basil, but but yeah. (1:08:24) I mean, mean, just I just like hearing people because you just don't hear people talk about this stuff every day.
Scott Benner Yeah. (1:08:29) That that ends up being the I think one of the values of the podcast is that it pulls together a lot of voices that you are hard to find in your regular life.
Suzanne Right. (1:08:39) And people that are trying to live their lives too that have, like, you know, normal lives as well, but they're trying to live them and but then they have to deal with this on top of it.
Scott Benner Yeah. (1:08:48) No. (1:08:48) I I hear you. (1:08:49) Yeah. (1:08:49) Well, I'm glad that it's it's
Suzanne been valuable for you.
Scott Benner Also, I think your a one c sounds terrific. (1:08:53) Wait. (1:08:53) What system are you on?
Suzanne I'm on a closed loop tandem.
Scott Benner So, like, are you using the, t slim or are using the Mobi?
Suzanne T slim.
Scott Benner Okay. (1:09:03) And you have, like what'd you say? (1:09:04) Like, a seven?
Suzanne Yeah. (1:09:06) Around I have her around seven.
Scott Benner Oh, your mom around seven. (1:09:08) But where are you at?
Suzanne I'm I'm around seven. (1:09:10) My mom is, like, six something usually.
Scott Benner Your because your mom eats differently than you?
Suzanne Well, she actually has kind of gone a little lower glycemic since she's been with me, but but she can eat other things than, her diet's more expanded than mine is.
Scott Benner Okay.
Suzanne She can eat dairy, which I wish I could.
Scott Benner What happens when you have dairy?
Suzanne I get earaches and sore throats.
Scott Benner Earaches and sore throats. (1:09:36) Okay. (1:09:37) Yeah. (1:09:37) There's a lot going on for you.
Suzanne Yeah.
Scott Benner Do you have a lot of allergies?
Suzanne No. (1:09:44) Okay. (1:09:44) Not not really. (1:09:46) But a few things, but not nothing.
Scott Benner Mhmm.
Suzanne Yeah.
Scott Benner Okay. (1:09:50) Alright.
Suzanne Like, I'm I'm allergic to echinacea, and I'm allergic to Valyrian and, you know, like, weird stuff.
Scott Benner It sounds like you're allergic to economics and the metal that the swords are made out of on Game of
Suzanne Thrones is what I just heard. (1:10:03) But yeah. (1:10:07) That.
Scott Benner That? (1:10:08) Yeah. (1:10:09) The Valyrian steel really gets to you?
Suzanne Yeah. (1:10:12) Well, I don't know. (1:10:13) Trust me.
Scott Benner I don't know. (1:10:14) But Valyrian steel makes a lot of sense to me because you're listen. (1:10:17) I'll tell you why, and then I'll let you go back to your life.
Suzanne Okay.
Scott Benner You're obviously a strong person. (1:10:22) You're going through a lot. (1:10:23) You're being pulled down by a lot, and I do not hear it in your voice or in your actions. (1:10:28) You're helping an elderly parent who also has type one diabetes in a society that does not really always do that for people. (1:10:37) And, you know, so it's not set up that way, and it's an extra effort there to help there.
Scott Benner You're doing it on a low budget, and that's just another example of your desire to be valuable and to work hard at this. (1:10:51) I mean, every answer you gave me sounded like an answer that is born out of a lot of experience and the knowledge that there's no real other answer except keep going. (1:11:03) And, you know, I think that's a pretty steely attitude to have. (1:11:06) So you're getting Valyrian steel, like it or not. (1:11:09) I'm sorry.
Scott Benner And if you have not watched Game of Thrones, go watch it. (1:11:12) You'll enjoy it. (1:11:13) It's excellent.
Suzanne I probably won't.
Scott Benner Why not? (1:11:15) It's so good. (1:11:19) I mean, you when you're laying in bed, watch Game of Thrones.
Suzanne I I don't I don't like to I you know, I don't watch a lot of TV anyway.
Scott Benner Suzanne, don't ruin this by telling me you don't love television, the greatest American art form.
Suzanne I'm I'm that's that's a contempt my mom wants to have a TV, I'm like, no, mom.
Scott Benner You won't let your poor mother have a television at the end of her life. (1:11:40) What is wrong with you? (1:11:41) I'll buy her a TV.
Suzanne It'll be great when she gets her own apartment, and she can enjoy that. (1:11:46) I just I I just can't. (1:11:48) I just can't have a TV going on.
Scott Benner Oh my gosh, Suzanne.
Suzanne Yeah. (1:11:52) This this I've changed
Scott Benner my whole opinion of you now.
Suzanne Okay. (1:11:55) So, also, like, I I do like watching occasional things.
Scott Benner Like what? (1:11:59) Tell me what you do like on television.
Suzanne What do I like to watch? (1:12:02) We like to watch, All Creatures Great and Small every Sunday. (1:12:05) We like to watch The Chosen. (1:12:07) I like to watch House of House of David, which is
Scott Benner This sounds like real is this, like, religious programming?
Suzanne It is. (1:12:13) But House of David, you'd like you'd probably like House of David.
Scott Benner What is it?
Suzanne It's a story of King David. (1:12:19) Sometimes I've said to myself
Scott Benner Oh, I see it. (1:12:21) Why it's on Amazon Prime?
Suzanne Put why don't they put this stuff on prime time TV? (1:12:24) Because this is this is pretty racy stuff. (1:12:27) You know?
Scott Benner Well, I gotta tell you, Suzanne. (1:12:28) I watched an episode of fear factor the other night that was awesome. (1:12:32) So I don't think I'm gonna be digging into the house, David. (1:12:34) I am watching, yeah. (1:12:37) I don't think our our television probably doesn't jive well.
Scott Benner Like, I do I I watch bad TV through the winter. (1:12:43) So, like, good TV, bad TV. (1:12:45) I don't know how to like, I'm watching paradise right now on Hulu, which I'm enjoying for some reason that I can't completely wrap my head around. (1:12:51) I think I just got done shrinking, season three. (1:12:56) My wife and I just watched Task.
Scott Benner Is it Task on HBO?
Suzanne Okay.
Scott Benner But it's almost baseball season. (1:13:02) I'm just gonna put baseball on television for for, like, the next nine months, and then I'll get back to it at some point. (1:13:08) But the once a mighty king Saul falls victim to his own pride, this is House of David. (1:13:14) In case anyone's interested, it's on Amazon Prime.
Suzanne It's good stuff. (1:13:18) I have a yeah. (1:13:18) I have a friend that's doing editing for it. (1:13:21) It's it's good stuff Yeah. (1:13:22) I think.
Scott Benner Listen. (1:13:23) I'm not arguing with your style.
Suzanne Oh, but but my my point too is I can't I sometimes I can't watch TV for very long Why? (1:13:31) Because I'm that sensitive. (1:13:32) My Are you serious? (1:13:32) Yeah. (1:13:33) I'm serious.
Suzanne I I can't like, I'm too tired to watch TV. (1:13:37) Like, it's just it's like it's a whole other
Scott Benner Thing to do?
Suzanne Thing. (1:13:41) Yeah. (1:13:42) It's like,
Scott Benner oh kidding.
Suzanne This this gonna drink.
Scott Benner Paying attention is exhausting?
Suzanne I guess.
Scott Benner Mean, it's your life. (1:13:48) I you'd have to answer. (1:13:49) I I don't know exactly.
Suzanne But, like, they like, the actual, like, Well, that's interesting, isn't it? (1:13:54) Yeah.
Scott Benner Well, maybe if you're watching Fear Factor, it wouldn't feel that way.
Suzanne That would probably ramp me up and I'd
Scott Benner Last week, they made them eat pies made out of bugs. (1:14:05) Oh. (1:14:05) It was horrifying. (1:14:07) Oh. (1:14:07) There was wretched.
Suzanne Yeah. (1:14:08) I think I I think I'll pass on that one.
Scott Benner We watched it while Arden was baking. (1:14:12) It was hilarious. (1:14:13) Because Arden was like, turn
Suzanne it down. (1:14:14) Turn it down. (1:14:14) Turn it down. (1:14:15) I can't I
Scott Benner don't she's like, don't I don't wanna hear that. (1:14:19) One of the pies was made out of scorpions, I just wanna say.
Suzanne So Was she baking pies?
Scott Benner She was making cookies at the time
Suzanne Oh, okay. (1:14:26) Okay.
Scott Benner For her boyfriend. (1:14:28) Aw. (1:14:28) Yeah. (1:14:28) It was nice. (1:14:29) Okay.
Scott Benner I'm gonna let you go. (1:14:30) This was fantastic. (1:14:32) Thank you very much for the time. (1:14:33) Hold on a second, though. (1:14:34) I'm gonna tell you a couple of things about how it comes out and everything.
Scott Benner So hold on
Suzanne one second. (1:14:37) Great.
Scott Benner Great. (1:14:38) Thanks again. (1:14:47) A huge thanks to my longest sponsor, Omnipod. (1:14:50) Check out the Omnipod five now with my link, omnipod.com/juicebox. (1:14:56) You may be eligible for a free starter kit, a free Omnipod five starter kit at my link.
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#1843 Two Fancy Pill Boxes - Part 2
Suzanne returns to discuss managing Addison's disease and T1D, detailing emergency injection protocols and steroid-induced insulin resistance. They also tackle dinner pre-bolusing struggles and diabetes social media burnout.
Key Takeaways
- Addison's Emergency Protocols: Severe physical stress, such as a broken bone or severe illness that prevents medication absorption, requires individuals with Addison's to administer an emergency injection of liquid cortisone to prevent a life-threatening adrenal crisis.
- Sick Day Rules & Medications: Introducing medications like GLP-1s requires caution for those with Addison's. Side effects like vomiting and diarrhea can prevent the body from absorbing crucial daily oral steroids, potentially triggering an emergency.
- Value of True Community: Navigating the oversaturation of diabetes content on social media can be draining. Finding a genuine, interactive support system—like a dedicated Facebook group—often provides deeper, more reliable support than fleeting, algorithm-driven trends.
- Dinner Pre-Bolusing Hurdles: Remembering to pre-bolus during the chaotic time of making dinner is a common challenge. Planning the specific macros (carbs, fat, and protein) for your typical meals ahead of time can reduce decision fatigue and improve post-meal numbers.
- Managing Fat and Protein: Meals heavy in fat and protein often result in a delayed blood sugar rise. Utilizing pump features like an extended bolus (on the Tandem pump) or manually staggering insulin doses can help counteract these later spikes.
Resources Mentioned
- Able Now: ablenow.com
- Contour Next Gen Blood Glucose Meter: contournext.com/juicebox
- Tandem Insulin Pump: Mentioned for its extended bolus features.
- TrialNet Study: Mentioned as a screening resource for family members of those with Type 1 Diabetes.
- Wrong Way Recording: wrongwayrecording.com
- Juice Box Podcast Website & Private Facebook Group: juiceboxpodcast.com
Introduction
Scott BennerWelcome back, friends, to another episode of the Juice Box podcast.
SuzanneHi. My name is Suzanne, and I have been a type one diabetic for fifty one years. I feel like I was diagnosed in the dark ages.
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. The 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. Nothing you hear on the Juicebox podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan.
Sponsors: Able Now & Contour Next Gen
Scott BennerThis episode is sponsored by Able Now, tax advantaged savings accounts for eligible individuals with disabilities. If you or your child lives with diabetes, you may qualify for an ABLE account because of ongoing medical needs, and many people in the diabetes community do. With ABLE Now, you can save for future expenses without affecting eligibility for certain disability benefits such as Medicaid. Learn more and check your eligibility at ablenow.com. You spell that ablenow.com. Today's episode is also sponsored by the Kontoor Next Gen blood glucose meter. This is the meter that my daughter has on her person right now. It is incredibly accurate and waiting for you at kontoornext.com/juicebox. Why does that matter?
Addison's Disease and Emergency Protocols
SuzanneI don't know if it does. I don't know if it does. It I also am a bit scared, full disclosure, of how my body will respond. I have not been in a crisis, knock on wood Oh, since okay. The first diagnosis in that whole like, I was in a crisis when I went into the hospital both times. Right? Both hospitals.
Scott BennerYeah.
SuzanneSo I don't know how I respond. I worry about, although I know there are things you can do, but I worry about the gastro effects because you know with diarrhea and vomiting then it becomes a whole another game with the Addison's and the steroids.
Scott BennerMhmm. The the most significant danger GLP medications commonly cause nausea, vomiting, and diarrhea, especially when first starting or increasing the dose for someone with Addison's vomiting or severe diarrhea is dangerous because it can prevent the absorption of your daily oral steroids. If your body doesn't absorb these hormones, you could rapidly trigger a life threatening adrenal crisis. Oh, so you're worried it oh, so you don't know how youre gonna, like, take to them. I would Yeah. Listen. I am not the right person to ask about this, but
SuzanneBut you love them.
Scott BennerI have used them. Used them. Took it yesterday. I I hugged the pen when I was done with it. And, before I threw it in the trash, I said, thank you. I whispered in a tear. I mean, maybe you could get the endo to help you, like, like, microdose it at first to try.
SuzanneI think it's a not now. Yeah. I think I'm also still getting used to this. You know? Okay. I have look. I'm not one to try to have I've I have never been one to have my diabetes stop me from something. Addison's, I kinda feel like is a whole another game. I've decided, like, I'm not going back to paddle because if I fall and break a bone, for example K. I've gotta have that emergency injection. And then I've gotta explain to everybody, like, if I fall, I have to have this emergency injection. And let's not forget, it's not like an EpiPen. Mhmm. You've gotta mix it. Take it. It's like old days of glucagon.
Scott BennerYou have to explain this better. What those, like, your sick like, sick day rules, right, for Addison's?
SuzanneYes.
Scott BennerYeah.
SuzanneTell me. Sick day rules for Addison's. So if you break a bone, you fall, you do something like that, which is why I'm not gonna play paddle, and I I'm not gonna go skiing. Like, my family just went skiing this couple weeks ago.
Scott BennerI'm like, nope.
SuzanneI'm not doing it. No. I went, but I didn't ski. I worked out in the gym. I did other things. If something like that were to happen, you have to have this emergency injection because normally, your body would produce all of this cortisol to deal with the stress of that injury to allow for you to heal and just deal with what what's going on. I would not have that extra cortisol, so you have to take this emergency injection of of, liquid cortisone
Scott BennerOkay.
SuzanneTo prevent a crisis. Also
Scott BennerThen that changes your steroids. Right?
SuzanneSo well, it changes the steroids?
Scott BennerWould you need more steroids if you had to take the emergency injection?
SuzanneYeah. So the cortisol is the is the steroid emergency injection. It's the same thing. Depending on like like, if I'm in the hospital, say, you would I'd be on a higher dose of steroids, and then I'd have to taper down, like, after an injection most likely. Okay. You know, there's so
Scott Bennermany different like so you take them orally usually, but in a sick day crisis, it would be an injection?
SuzanneNo. No. In a sick day crisis, I would up my dose. But in an emergency situation like a broken bone, you have to have that injection.
Scott BennerThat is the injection. Okay.
SuzanneYeah. Or if it's a sick day and I cannot keep the pills down, I would have to do the emergency injection and then go to the ER.
Scott BennerAnd has that happened yet?
SuzanneKnock on wood. No.
Scott BennerYou are coasting now as far as a person with all your issues could coast, and you're very scared to upset the apple cart. Yeah. Yeah. That makes a lot of sense to me, by the way.
SuzanneI'm even like so this is I don't know. This is kinda silly. But, like, I think my biggest fear with the Addison's is, like, a car accident. Oh. Right? Because if I'm in a car accident, I have to have that injection.
Scott BennerAre you still in the city? No. No. You're out
Suzanneof Okay. Yeah. Connecticut suburbs. Yeah. So
Scott BennerAnd people in Connecticut really can't drive, so that might be a problem.
SuzanneNot drive.
Scott BennerYeah. Yeah. Horrible. Well, it's because they lived in Manhattan their whole lives. Yeah. Yeah. Then they bought a car.
SuzanneAssholes. They make assholes look good now, almost. It's so bad.
Weather and Moving South
Scott BennerWe had to go to Boston recently, and Arden goes, why are we not driving? And I was like, I do not wanna drive through Connecticut and Massachusetts. Yeah.
SuzanneYeah. It's horrible. Yeah. It's bad. So, you know, in many ways, it's I I would say I'm not fearful of the diabetes. I'm more fearful of the Addison's, and I don't know if that's because it's all new. Or, I mean, I think they're legitimate, quite frankly, legitimate reasons
Scott BennerMaybe not.
SuzanneTo be fearful of Yeah.
Scott BennerAlso, doctor knows you and no one else. So, like, you will be doing a little bit of an experiment together. Also, let me just say to the people in Massachusetts, I don't think you're assholes. I love you, and thank you for listening. Please don't unsubscribe. Yes. Yeah.
SuzanneWe have great friends
Scott Bennerfrom Massachusetts.
SuzanneI agree. I agree.
Scott BennerOh, it's just it's just so cold there. Other than that, it's
Suzanneit's fun. Anyway, snow here today.
Scott BennerYou know what? It was 82 degrees yesterday, and then my and Arden comes home and she's, did you hear it might snow today? And I went, why are we not moving? Why will no one listen to me when I tell you to move south? I'm can I tell you something? I am I just said yes to doing a one day speaking event in Atlanta for Touched by Type one
SuzanneMhmm.
Scott BennerIn April. And I would normally just jump on the plane and because I live I mean, I live in Central Jersey. I could actually despite the news that came out of Trenton the other day, I could jump on one of those quick Trenton flights to go right to Atlanta. Right?
SuzanneMhmm.
Scott BennerAnd drive fifteen minutes from my house, get on a plane, land in Atlanta, come home, $20 to park, be home fifteen minutes after the plane lands. Like, so
SuzanneThat's so crazy.
Scott BennerSo I'm like, maybe I'll do that. But then I thought, maybe I'll drive. And I still sound crazy at first because maybe I'll take a couple days on the way home and go through some of the parts of the South that I keep trying to tell my wife we should move to for weather and tax purposes. Maybe I'm gonna do that to see if it's just something I'm saying out loud that I don't mean. Like, do you know what I mean? Like, Mhmm. Mhmm. I just I wanna I wanna
SuzanneWhat parts of the South would you wanna drive through? Because I grew up in Southern Virginia.
Scott BennerI've been looking at houses east of, like, Nashville. Oh. Yeah. Because of the Tennessee That's not on your way
Suzanneto Atlanta, by the way.
Scott BennerWell, no. I I can leave Atlanta. I could drive south about three and a half hours or north north and and end up in Nashville. Yeah. Oh, and then go maybe go home through, like, the maybe I'll do the mountain. Like, it's instead of going all the way back to '95, maybe I'll go up through, you know, like, through the other pathway up north.
SuzanneOkay.
Scott BennerBut my point is is that I don't know if you know there's no income tax in Tennessee.
SuzanneI did not know.
Scott BennerYeah. But now you know and you're thinking, where's Scott? I'll meet you. We'll take a look around.
SuzanneYeah. Just tell my husband he'll be there.
Scott BennerShe's never gonna let me move. She hasn't let me do one thing I wanted to do since I met her, so I don't know why I think this is gonna work out.
SuzanneYeah. Yeah.
Scott BennerBut
SuzanneBut you know you go. Yeah. Yeah.
Scott BennerMaybe a condo. Yeah. Why do we both have to go? We've been married thirty years.
SuzanneRight. We talk about this stuff often too. And, you know, the bottom line is for us, because of me, is health care.
Scott BennerYou wanna stay close to health care. I know it is one of the it is one of the thoughts. All the Vanderbilts down there, they must know what they're doing. Right?
SuzanneThey have to know what they're doing. Yeah. Yeah. So Yeah. Know, I feel very fortunate to have the doctors that I have because it's not like this everywhere.
Scott BennerNo. No. For sure. You could be I listen. I talked to plenty of people who never get answers about anything. And Yeah. And for the struggle you're having, who knows how much less it is because of, you know, of the health care you have access to.
SuzanneAbsolutely. Yeah. Absolutely.
Scott BennerNo. I I take your point. I I really do. I the the problem here is is that I'm not wealthy because I would just live there part that you know, enough days for tax reasons and then come back here for other stuff.
SuzanneBut Right.
Scott BennerI really don't want I do hate the cold. I wanna say that. I'm very upset by the cold. And I just the you know, the last two days, walking outside was such a joy the last two days.
SuzanneSo nice.
Scott BennerYeah. So
SuzanneWhile the piles of snow are melting.
Scott BennerAre there not other people who ex enjoy that more frequently is what I'm saying? And Yeah. Couldn't I be one of them, please?
SuzanneRight. Right.
Scott BennerKelly's gonna say no. She's gonna say the kids are here. We don't know what Arden's doing yet. We can't move away. Yeah. I'll be like, just make them they they don't have money. Like, we'll just force them to come with us.
SuzanneYeah. Yeah. They can follow you.
Scott BennerYou say have no choices is what I'm saying.
SuzanneWe could just Right. They're still relying on you. We could
Scott Bennerjust strong-arm them. I mean, it wouldn't be that big of a deal. They'd get over it eventually.
SuzanneYeah.
Scott BennerI don't know.
SuzanneAnd you have the beauty if you can work from wherever you are.
Scott BennerIt doesn't matter where I'm at. As long as the Internet's good, I'm rock solid. Yeah. Yeah. Yeah. Yeah. She seems to think her biz her job would like her to be at work, and I'm like, can't we? I'm sure we could work it out. Yeah. Yeah.
SuzanneWe make flexible.
The Yellow Tree Monitor
Scott BennerBy the way, I'm not getting enough credit for this episode. What no one knows but me is that I I I think I've said this once. I'll say it one more time just so it kinda covers. My original chameleon died recently, like, few months ago.
SuzanneSorry.
Scott BennerThank you. She was lovely, and she she lived at a reasonable time and and did okay. But she left me with a bunch of space, and I did replace her not replace her, but I got something different. But I I didn't get a chameleon this time. I got a tree monitor, and she is running around in there like a crackhead.
SuzanneTree monitor?
Scott BennerYeah. It's a yellow tree monitor.
SuzanneI'm gonna Google this.
Scott BennerOh, jeez. You know what? Okay. Go ahead.
SuzanneI wish I had the camera to see them.
Scott BennerYellow tree monitor. Google that. K. You're gonna get an image. It's either gonna horrify you or delight you. It depends on your on how you feel.
SuzanneOh, kinda cute. Quince monitor.
Scott BennerShe's like, no. Not a Quince.
SuzanneYeah. Why did it come up Quince monitor?
Scott BennerNo. Those are big. I that I couldn't do. This one's smaller.
SuzanneOkay.
Scott BennerAlright. But, anyway, she has what they call the poop zoomies. So she's gone to the bathroom, so she's just thrilled. I most people know what I'm probably have this happen in
Suzannethe mix. My dogs. Yeah.
Scott BennerYeah. And she is just, like, diving around and taking laps and running up and down and flopping on the ground and then running up the wall. Like, she's just all she's like a crackhead right now.
SuzanneThat's so cute.
Scott BennerSo, anyway, she she's it's been in the corner of my eye. I'm trying not to look so that I can keep talking to you.
SuzanneI had to drug drug my dogs for this today.
Scott BennerYou had to drug your oh, you know what I've I
Suzannewas literally thinking about drugging them, but I gave them some CBD treats, and I shut them in the basement.
Scott BennerYou know what I've been wondering the whole time you're talking?
SuzanneYeah.
Scott BennerDid Jackie get a bonus?
SuzanneJackie's my life I call her my lifesaver.
Scott BennerI mean, honestly, like, the dog sitter took you to the hospital.
SuzanneYeah. Look. Jackie's amazing. She also, Scott, stayed with me till, like, one something in the morning. And I was like, Jackie, you gotta go home.
SuzanneWell, and home was to my house
Scott Bennerat that point in time. Right? Listen. You gotta go take care of the dogs. As I told you earlier, ABLE Now is sponsoring this episode. ABLE Now, of course, tax advantaged ABLE accounts for eligible individuals with disabilities. If you or your child lives with diabetes, you may qualify for an ABLE account because of ongoing medical needs. Many people in the diabetes community do. With ABLE now, you can save for future expenses without affecting eligibility for certain disability benefits such as Medicaid. And thanks to updates to federal law, ABLE accounts are now available to more people than ever before. That means more individuals and families can use ABLE now to save and invest. Funds in an ABLE now account can be used for a wide range of everyday needs, including education, transportation, health care, assistive technology, and more. There's no enrollment fee, and you can open an AbleNow account with a small initial contribution and build from there. Learn more and check your eligibility at ablenow.com. That's ablenow.com, ablenow.com.
Scott BennerContournext.com/juicebox. That's the link you'll use to find out more about the Kontoor Next Gen blood glucose meter. When you get there, there's a little bit at the top. You can click right on blood glucose monitoring. I'll do it with you. Go to meters. Click on any of the meters. I'll click on the Next Gen, and you're gonna get more information. It's easy to use and highly accurate. SmartLight provides a simple understanding of your blood glucose levels. And, of course, with second chance sampling technology, you can save money with fewer wasted test strips. As if all that wasn't enough, the Kontoor Nextgen also has a compatible app for an easy way to share and see your blood glucose results. Contournext.com/juicebox. And if you scroll down at that link, you're gonna see things like a buy now button. You could register your meter after you purchase it. Or what is this? Download a coupon. Oh, receive a free Kontoor Next Gen blood glucose meter. Do tell. Kontoornext.com/juicebox.
Scott BennerHead over there now. Get the same accurate and reliable meter that we use.
Social Media Saturation in the Diabetes Space
SuzanneJackie's amazing. I love her. And, you know, we have started this great friendship because of our diabetes. It's tied us together and obviously the love of our dogs, my dogs. But I live in this great area and yet there is such a lack of a diabetic community. It is shocking. And so I feel like Jackie and I have this great bond with the diabetes and the fact that I call her my lifesaver now. It's just the fact that we can talk to each other about things that are working, things that are not working, and introduce each other to new things. Like, I told her about the glow glucose gummies.
Scott BennerMhmm. Well, those are good.
SuzanneOr, like, I'm a I'm either those are great. And I even gave her some of my g six transmitters that I don't need anymore. You know? I'm like, here. Take these.
Scott BennerYou know, I turned down a speaking engagement in your area recently because it just wasn't deep enough. Like, the
SuzanneI I don't get it.
Scott BennerThe topic they wanted was so surface. I was like, I'm not driving all the way up there forever.
SuzanneWho was gonna do it? Who was gonna do
Scott Bennerthe talk? Wanna say. But, like, I don't wanna I don't wanna bad mouth anybody. But I got I mean, they invited me, but then the topic they wanted was just so it felt surface y. So I I I pushed and pushed back. I I offered back. I said, why don't you let me do something more like this? And I think the person calling me wanted to, but I don't think it worked out with their scheduling or how much time they had in their space and stuff like that. So maybe they'll try again next year.
SuzanneLike like, I don't get it. Like, this is this is a suburb of New York City. Right? I'm in Connecticut. Right?
SuzanneSuburb of New York City. And there have to be a ton of other diabetics.
Scott BennerYeah.
SuzanneAnd there is no that I have found, like, I've tried to Google this, there is no support group here. I I just to me, it makes no sense.
Scott BennerYeah. Well, I mean, people don't what I've learned doing what I do is that if there's not an appetite for something, then doing it is it's expensive, and and it ends up feeling like a waste of time. Yeah. I just closed down a social media thing I was doing that I think is fantastic. Yeah.
Scott BennerI think it's absolutely fantastic. It just didn't catch on with people. So I'm like, okay. Fair enough. Like, I'm not gonna beat my head against this wall. Like, I'll close it up. I'll save the money, and and I'll put the effort somewhere else. You know? But everything everything doesn't always work.
SuzanneNo. But Facebook works for
Scott BennerIt really does.
SuzanneI think it's great.
Scott BennerYeah.
SuzanneYeah.
Scott BennerYeah. No. It's awesome. It's funny. I was looking today.
Scott BennerI I started getting myself worked up this morning, and I realized if I was a different kind of I can't believe I'm gonna say content creator. But if I was a different kind of content creator, I would definitely rant and rave about this. I feel like the diabetes space online is starting to get oversaturated. That worries me because I think that ends up pushing people away. When you have too much when there's too much, I think it becomes noisy and then people just kinda run. I'm watching big organizations put up their social media, like, stuff stuff I, like you know, not only do I agree with, but, like, I'm supportive of, like, this one thing I'm thinking of. I would never out them, but, like, if this really well conceived piece of social media they put up, it's got two likes in after seven days.
SuzanneOh.
Scott BennerNo one sees this. And there's a another thing. They couldn't possibly have better production value in these videos they're making and 1,400 views on Instagram, which means, like, five people might have looked at
Suzanneit. Mhmm.
Scott BennerMhmm. You know what I mean? And it's just there's an oversaturation. Like, everybody I think you're all doing the wrong thing. But God bless you.
Scott BennerYou're gonna do it. I know you are. But, like, they're chasing social media trends, but trying to adapt it to diabetes. I don't think anybody cares. It doesn't touch me.
Scott BennerI live in a bubble as far as that stuff goes, like, the the way the podcast operates. But I feel bad because there's so much desire to do something, and I just feel like they're they're putting all that effort into the like, it would be much better to just start a like a I think, like, a group in Connecticut for people to get together and talk once a month. They would be much less expensive. It wouldn't look exciting because, you know, maybe 30 people would show up, but those 30 people would really be helped by that. Yeah.
Scott BennerAnd, you know, I don't know. Like, I'm I sound like an old man who's like saying, get off your I want you off my lawn now. You're making the same mistake that the blogging world made, like, fifteen years ago. Mhmm. They're oversaturating it.
Scott BennerThey're gonna kill it.
SuzanneAnd they spent money to figure that out too.
Scott BennerA lot. The I mean, there's a ton like, don't get me wrong. Some of it works. You have to boost it. You have to, like, pay it's gotta be paid stuff, like, stuff like that.
Scott BennerLike, just generically, like, nothing works anymore. Like Yeah. You know what I mean? Like, I don't even think of my social media social media. I think of it as a way to just connect with people who listen to me who are looking to, like, interact on those like, I'm not trying to grow on Instagram or something like that.
Scott BennerI couldn't maybe possibly care less. I don't know. Like, there's just so much effort and money being put into this stuff, and I think it's because they're all afraid not to be doing it. Like, they it's like it's like FOMO. Yeah.
Scott BennerLike, they really feel like, well, what if we I think they should all just stop. Yeah. I don't think I don't think it's doing any
Suzannesomewhere else?
Scott BennerYeah. I don't think it's doing anything. It looks like something. It's great to go on LinkedIn and pat each other on the back all the time, say, look at all the stuff we're doing. I'm like, hey.
Scott BennerYou guys are the only ones that say it, but god bless you. It's shiny. It looks great.
SuzanneNow I'm wondering what you're I'm wondering.
Scott BennerI'd be happy to tell you once we're not recording, but I just calling. I'm not
Suzanneacross my feeds.
Scott BennerI don't want I don't want people to, like, like, I'm listen. They should you know, if that's what they wanna do, they should do it. I just think if you were if you consulted with me and said, what should I do? I would say I would definitely not spend all that money on making that fancy video that four people looked at.
SuzanneRight.
Scott BennerYou know? So and by the way, I'm gonna guess you're two of them. So
SuzanneIf not four.
Scott BennerSo COVID outed everybody. Right?
SuzanneRight.
Scott BennerBecause everyone tried to pivot digital during COVID.
SuzanneMhmm.
Scott BennerAnd, like, I have said this before, so I'll say it again. Like, I knew what was gonna happen back when the JDRF tried to go live on Facebook, and, like, 11 people were watching. And I and I was one of them. And I was just going, oh my god. There's only 11 people watching this.
Scott BennerSo, like, I wasn't watching it for the content. I was watching it because it seemed like a it seemed like a car wreck to me. Right. Then then suddenly, all these institutions that would like they they looked big online because they have so many followers. Like, you don't realize they're historical followers.
SuzanneMhmm.
Scott BennerYou know what I mean? Like, oh, we have I have a 100,000 people following me. Like, no. You don't. You know what I mean?
Scott BennerLike, you've collected a 100,000 people over the last fifteen years.
SuzanneThey're following you.
Scott BennerYou're posted 20 likes. There's there's 20 people following you. Yeah. Yeah. Like, that's why I'm I'm super proud of the of our Facebook group because it does, like clockwork, between 90 is the low number, up to a 160 is the high number, daily new posts.
SuzanneThat's amazing.
Scott BennerYeah. And then likes, a a combined collection of likes, comments, hearts like that Yeah. Between eight and nine thousand a day.
SuzanneI'm so bad. I never I I I skipped the likes and the hearts and all that.
Scott BennerEven put put that into context. Yeah. Right? Like, most people don't like heart and comment. And yet
SuzanneAnd it's not that I dislike it. I just don't remember to like it.
Scott BennerWell, you you don't need like, I'm saying, like but still look at all that happens. Like like Mhmm. 8,000 a day is you're a normal person. Like, you don't know about this, but trust me. I get on a phone call with the right person.
Scott BennerThey they they're like, oh my god. How do you do this? And I'm like, I just let people talk and treat them like adults. I was like and and I don't I don't push crappy social media, like, trends at them and tell them to be upset about the islet cell problem. And, like, I just let them like, stop.
Scott BennerStop. Like, just stop using social media around diabetes like social media. Yeah. The only thing that works is outrage. I almost said something I don't wanna say here.
Scott BennerSkin and outrage is the only thing that works. And Right. And you're chasing that, some of you. It's just I mean, it's just I am not a big fan of soliciting, you know, people in bikinis to show you their devices. And but I know that's the only thing that works.
Scott BennerGo ahead and look at any company's social media. The ones where you see more skin get better likes.
SuzanneSo interesting.
Scott BennerYeah. Like and so Sad statement. Yeah. And and it just it's what it is. Right?
Scott BennerOr you you know, the influencers around diabetes who are more popular are generally female. They're generally younger, and they burn out, like, incredibly quickly. Like, so whoever
Suzannea weird concept to me, like, influencers with the diabetes.
Scott BennerYeah. I mean, I don't have a problem with it. I'm just saying that, like Yeah. What I'm telling you is that the people looking, they don't care about the diabetes piece. Yeah.
Scott BennerThey found you because you have diabetes. They're clicking or scrolling because you're pretty or you're attractive or you're handsome or whatever you are. Like, you you know what I mean? That's it. Like, it's a real I don't know.
Scott BennerArden and I just did some social media for Omnipod. It's gonna be out pretty soon. And I'm wondering if anybody will even look at it because it's just me talking or Arden Arden's doing pod fill examples, like how to fill a pod. And but I don't think anybody will care.
SuzanneI think people will.
Scott BennerOh, well, maybe.
SuzannePeople will.
Scott BennerI have no idea. But, like, my my point is is that, like, Arden's dressed in filling a pod. So I'm not not sure how that's gonna go. Yeah. Yeah.
Scott BennerYeah. No. I was I was happy about it. I don't know where any of this goes. So it's still, like, it's cure, outrage, skin, and then strife.
Scott BennerStrife.
SuzanneSee, I just think I'm too old for all that other stuff. Like, I would really be interested to see how you fill the cartridge.
Scott BennerYeah. No. Right. But once
SuzanneI have no idea.
Scott BennerBut that would but here's the point about it being social media and, like, all this money that goes into it. You'd be interested in it once. Yes. You'd look and go, oh, wow. Look at that.
Scott BennerWatch it for sixty seconds, and you'd never think about it again. You certainly wouldn't head back to see if they were doing it again next week.
SuzanneI forget to like it also.
Scott BennerAnd you forget to like it, and that would make those people so sad who worked so well on
Suzanneit. Right.
Scott BennerI mean, if you stop and look at the things that attract people over and over again, they eventually, it burns out. And I'm just saying, I'm shooting a flare up in the air, and I'm telling you all, don't burn this out because you'll lose all these people. They'll be gone. Yeah. And I could use any number of, you know, other I don't know.
Scott BennerHere, I'll I'll do this one. During COVID, people started keeping this is gonna sound crazy because this is not when I started doing it. But, like, during COVID, people started keeping reptiles much more than they used to. It was that thing you could do in your That's
Suzanneinteresting.
Scott BennerThey could be shipped to you. You could bring like, you know, the cage could be shipped to you. The animal could be shipped to you. And reptile YouTubers blew up. Oh.
Scott BennerPeople YouTubing about their bearded dragon or something like that. These people were doing half a million views on a YouTube. They they were like, oh my god. This is a job. Peep they were quitting their jobs, like, you know, doing this whole thing.
Scott BennerIt's all gone now. Like, it's just all you burned everyone out. Like, you showed them too many goddamn reptile videos, and they went, they were like, uncle, I'm done. I don't care anymore. Leave me alone.
Scott BennerAnd now there's, you know, one or two remain behind. If you're listening right now, you you know, like, there's a there's a channel called snake discovery. Like, people like that one. It it it held up. There is a guy doing these big videos that were super power like, popular forever.
Scott BennerHe's hundreds of thousands of likes or or or views on everyone. Now he does more like forty, fifty thousand views.
SuzanneOh, wow.
Scott BennerAnd do I blame people for seeing success and wanting to be a part of it? I don't. I think that's the natural way things work. But when everyone rushes in, you you saturate the market. And then once you saturate it, then you make people sick of it.
Scott BennerAnd then when they get sick of it, they're gone, and you will never get them back. And only a couple people will remain on top. And that's happening in diabetes right now, I think.
SuzanneIt's just too bad.
Scott BennerYeah.
SuzanneIt's too bad.
Scott BennerSo, anyway, I watched it happen with blogging. They oversaturated it, and it collapsed. I pivoted out of blogging fast enough to do this. I don't seem to be getting any, I don't wanna say this the wrong way. I think there are people doing cool stuff.
Scott BennerI don't dislike them at all, but they're not competing with me on downloads is probably the nicest way to say it. Do think I'm in a bubble, but eventually this bubble will burst too. It's just not gonna burst because so many people got into it. It's gonna burst because I screw it up or I run out of things to say or whatever happens.
SuzanneI think you feel a huge need. You know, think about me here in this, you know, highly populated area. There is no community. Mhmm.
Scott BennerNo. No. And you get to tell your story today about stuff that like, I guarantee you that countless people listen today and went, oh god. Do I have Addison's? That all sounds very familiar.
Scott BennerYou know what I mean? But it's gonna have like, that's how people find out about stuff. You know?
SuzanneBut people should be aware. You know? Like Yeah. Yeah. I was I mean, I think that's, you know, part of the reason why I wanted to come on here.
Family Autoimmune History and TrialNet
SuzanneYou know? I had no clue about Addison's other than the fact that JFK had had it. You know? Now Did he really? Yeah.
Scott BennerI didn't know that.
SuzanneYeah. Yeah. Okay. And that was, like, one of my attitudes in the hospital. I was like, well, if he can handle the Cuban missile crisis, I think I can handle this.
Scott BennerI can get coffee and take my dogs for a walk for sure. Exactly.
SuzanneYeah. Yeah. Exactly. Right?
Scott BennerWell Yeah. Yeah. Well, I really I wanna make sure we didn't like, I know I chatted too much at the end there, but, Susan, did we did we miss anything, or did you get everything out you were hoping to say?
SuzanneNo. I was gonna say it's funny. You always ask about autoimmune history.
Scott BennerOh, I didn't do that? Hey, Suzanne. Is there any other autoimmune in your family? Like, I don't know, like brothers, sisters, sisters, uncles all the way down the line?
SuzanneFunny. You should ask ask that, Scott. So my grandmother's sister was a type one diabetic.
Scott BennerOkay.
SuzanneAnd that's all that I thought there was in our family. And then right after the Addison's diagnosis, I was trying to find, like, paperwork from I knew I had a few pieces of paperwork from when I was younger, you know, that my parents somehow randomly given me a few of these pieces of paper about my care. And by the way, we had done genetic counseling when we were married to see about having kids, And I didn't have any of this information except for my grandmother's sister's a type one diabetic. But on my dad's side, there was hypothyroidism and then rheumatoid arthritis on both sides of the family. Oh.
SuzanneAnd I had no clue.
Scott BennerYou don't have RA, though?
SuzanneLike, no. Not yet. Yeah.
Scott BennerIt's probably you probably would know by now, I would imagine.
SuzanneI would probably know by now. Yeah. Yeah. Well Yeah. Funny how these things come to light later on.
Scott BennerHow about your kids? Are they showing signs of anything?
SuzanneKnock on wood. They're fine. My daughter would like to do the trial net study. I just need her to be home long enough to get the blood work done. My son has no interest.
SuzanneHe's younger, and he's still in high school. He has no interest in doing that, but would like for her to do that.
Scott BennerShe came to you or you came you went to her?
SuzanneYou know, when I was doing one of these studies at the hospital that I go to in the city, they were actually offering it. And she was she was definitely younger then, and she didn't wanna do it. And then, when the whole Addison's thing came up, I brought it up again, and she's like, oh, yeah. I totally wanna do that. So and and, of course, my son is like, no.
SuzanneOkay.
Scott BennerMhmm. No.
SuzanneBut I think she will do it and find out. Yeah. I think it's important to know.
Scott BennerListen. If it's a thing she wants to know, she should definitely do it. It's easy it's easy enough to accomplish. You know?
SuzanneI consider I have a brother also, and he's totally normal. I kinda consider us medical orphans now. I wish there are you know, so many questions I wish I had asked, but I'm
Scott Bennernot Oh, now there's nobody to ask. Time.
SuzanneYeah. Yeah. Now there's nobody to ask.
Scott BennerYeah. Yeah. Yeah. Your your brother's totally normal. Is that what you said?
SuzanneYep. Totally normal. In fact, that was almost a direct quote from one of these, like, forms from, like I think it was, like, Duke University or somewhere like that. You know? Brother's normal.
Scott BennerBrother's normal.
SuzanneBrother's normal.
Scott BennerGirl seems to be an issue.
SuzanneGirl's an issue, but brother's normal.
Scott BennerRight? Through all this. I'm sorry to ask you this. But, like, through your life, like, menstruation, all that, never a problem?
SuzanneYeah. That's an interesting question. I did have heavy periods. Mhmm. I did have heavy periods.
Correlations vs. Complications
SuzanneMy mom had endometriosis, so I, you know, I don't know if there's a connection there, but I I did have some heavy periods. Yeah.
Scott BennerYeah.
SuzanneAnd then I would try you know, certain kinds of birth control will help with that also.
Scott BennerYeah. That's what they I a lot of girls fight against that now. They don't wanna
Suzannedo it. Yeah. Yes.
Scott BennerArden's been offered, she's like, I I just I didn't like how it felt, and I don't wanna do it. So
SuzanneMy daughter fights with that. Yeah. What makes what made you ask that? I'm curious.
Scott BennerI just think that a lot of women in and around autoimmune seem to have heavy periods and trouble Interesting. Menstruating. Like, I don't know enough to say it out loud, but it just a lot of
SuzanneYeah.
Scott BennerMy job is weird, and I hear people, you know, who are in a bucket, basically, and they say a lot of things that are similar. That's the same way I feel about, like, anxiety and people with autoimmune seems to be just, like, rampant. I went through that phase for a couple of years where everybody had, like, a a bipolar uncle. I I was like, this is, like, you know, this is, like how many people are gonna say this to me? You you know what mean?
SuzanneThere's a lot of correlations with diabetes that are not considered complications.
Scott BennerYou just think it's autoimmune in general and and inflammation and stuff like that.
SuzanneRight. Inflammation. Like, they consider the trigger fingers to to not be a complication, but more of a correlation, was once told by a doctor.
Scott BennerIs that called Dupuytger's something?
SuzanneYeah. There's so many different things.
Scott BennerYeah.
SuzanneI thought Dupuytren's contracture was something else, but maybe that is a trigger finger.
Scott BennerI don't know.
SuzanneI know I've had trigger releases. I don't know which fingers anymore. It's hard to tell. The carpal tunnel on both hands, and then I've had also something called Dekker veins.
Scott BennerWhat's
Suzannethat? And I might be mispronouncing that. So that was when I had my daughter literally picking her up, that that action of holding a baby and picking her up was so painful.
Scott BennerAnd
Suzannegone to see an ortho who was like, oh, you'll be fine, you know, once your daughter starts walking. And she was a baby.
Scott BennerBecause you won't have to pick her up anymore?
SuzanneOkay. Right. Like, I'm like, I'm picking up this child for a very long time, and I had seen someone this was a local orthopedist, and, I went back to my doctor in the city who had done my surgeries, and he was like, oh, you've got I think it's called Dekroveins, but Dekroveins, something like that. Cannot pronounce it, as I said. And he's like, nope.
SuzanneThis is what you have. And I was like, can you fix it? And he's like, well, it's another surgery very similar to carpal tunnel. And I was like, okay. You need to do both hands, like, at once.
SuzanneLike, take care of both hand.
Scott BennerOkay. Did they do that? They usually won't do that.
SuzanneThey usually won't do that, and I convinced them to do it.
Scott BennerI just Yeah. I have to tell you. The world confuses the hell out of me sometimes. Hey. It hurts when I pick my kid up.
Scott BennerDon't worry. She'll start walking. What? What? What kind of an answer is that?
SuzanneWhat a jerk.
Scott BennerWhat kind of an answer is that?
SuzanneWhat a jerk. And, oh, I tell everyone locally, like, don't go see him. Like, horrible. Horrible bedside manner. What a jerk.
SuzanneAnd I end up having, like, bilateral surgery
Scott BennerOkay.
SuzanneTo fix it. Yeah. Right? And I did it. I insisted upon it bilateral, like, to do it all at once because I could get help from my parents to come up for, like, six weeks Mhmm.
SuzanneTo help me, because I wasn't gonna be able to lift up my child and a husband commuting to the city. So, we were helpless. I I couldn't have someone come up for twelve weeks for two different surgeries. You know? Couldn't even
Scott Bennertalk my dentist into doing a cavity on two sides of my mouth at the same time. Oh. He's like, you're gonna bite your tongue off. I'm like, what if I promise not to?
SuzanneYeah. I don't know if I do that. I have to be honest. That would wake me up.
Scott BennerI'm like, look. I'll just, can I just put something in my mouth for an hour or two and after I leave to make sure I don't bite my tongue off? Like, I'll like, I don't Yeah.
SuzanneWhat would you I mean yeah. Yeah.
Scott BennerGive me a tongue depressor. I'll I'll do it. But yeah. Like, what he's like, no. You might bite your tongue off.
Scott BennerLike, my god. Like, don't you think if I bit my tongue off, I deserve it? Do you know what I mean? Like, you don't think that's a thing I could focus on for ninety minutes? Hey, Scott.
Scott BennerDon't bite your tongue off. Right. Like, what if I put it on a sticky and held it at my hand? And so but then I gotta go back twice. I think he's just looking for money.
SuzanneWell, it yeah.
Scott BennerHe's getting ready to retire.
SuzanneYeah. You know mean? He'll pay for it.
Scott BennerProbably make a little pile here at the end. I know what's going Yeah. Yeah. I'm just kidding. I'm sure it's it sounds pretty unsafe to numb both sides of a purse, but but I've tried, like, to get them to do it, they've been like, no.
Scott BennerSo that's why I was interested they would do both your hands. Because the I mean, how did you wipe? Like, there wasn't there a lot going on there?
SuzanneI mean, my my mom had to help me. I mean, I was like an infant again. Yeah. Yeah.
Scott BennerLay on your back and pull your legs up?
SuzanneYou know? I mean, I think, like, to a certain extent of, you know, I could like, it wasn't that long till I could do that. Yeah. Yeah. But I couldn't wiping's different from picking up a child, Scott.
SuzanneMhmm. You know? But yeah. Yeah. That's interesting.
SuzanneFunny.
Scott BennerYour life is, is interesting. I appreciate you sharing it with me.
SuzanneThank you.
Scott BennerSeriously. Yeah. No. This was this was really fun. I mean, odd
SuzanneI'm just living it. I'm just living it, and that's all I can do. Right?
Scott BennerI mean, there doesn't seem to be a lot of other options as far as I can tell.
SuzanneNo. You gotta you gotta take what you're given, and and I think you have to make the make the most of it, you know, and make the best of it. It's not perfect. You know? Like, I am not a perfect diabetic right now at all.
SuzanneI can just keep working on and trying.
Scott BennerYeah.
SuzanneI'm still proud of where my a one c is. I think despite everything, I'm in a good I'm actually in a very good place. Mhmm. I just think I could do better. That's all.
Dinner Pre-Bolusing and Extended Bolus
Scott BennerWell, what would I mean, give me give me two minutes. What what would that look like? What would you have to do?
SuzanneI really suck at pre bolusing at dinnertime.
Scott BennerOkay.
SuzanneThat's hard for me. Only because I'm cooking and making dinner and, you know, we don't try to eat healthy and, you know, make dinner and things like that. So it's always it's a little bit of a mess. Right? Like, trying to cook dinner, get dinner on the table.
SuzanneLike, last night, I was trying to be so good and pre bolus, and I'm on the tandem pump. And I I don't know what I did. I I didn't click or press the button to go ahead and make it start the bolus. And I sit down to dinner, and I'm like, ugh. Are you kidding me?
SuzanneLike yeah. Stuff like that will sometimes happen or more often than not. I find dinnertime for some reason is is a mess, not just because of that, but also the just with my insulin absorption and maybe the steroids.
Scott BennerMhmm.
SuzanneI just struggle. I go higher later at dinner, so I'm trying to do a lot of prolonged bolusing, or stretch that bolus out. I'm pretty good in the morning.
Scott BennerMaybe a magnet on your refrigerator that says pre bolus.
SuzanneI yeah. Gave Something.
Scott BennerI gave all mine away or I would I would give you one.
SuzanneI need something.
Scott BennerYeah. I I don't know how it's one of those things.
SuzanneLike It's hard.
Scott BennerYeah. If you don't have somebody helping like, last night, I was cooking last night, and I texted Arden Bowles now. She was, like, eight feet from me. But she was work she was sitting at the table in the kitchen.
SuzanneShe'll respond better to a text. Right?
Scott BennerShe was studying for a French homework. And so, like, in my mind, I was like, it's ridiculous now that I think back on it. Like, I didn't wanna bother her, but I also she needed a bolus. And so, like, I thought maybe it'll just pop up in front of her, and she'll just, you know, keep moving and go. Instead, she turns out, she looks at me, she goes, I'm right here.
Scott BennerI was like, that's usually my line. That I was like, but, you know, but she's got somebody to, you know, help her remember sometimes. Yeah. And I'll I'll tell you, know it seems simple, but I have spoken to so many people. Remembering the pre bowl as a meal is is really difficult.
SuzanneIt's huge.
Scott BennerYeah. It's
Suzannehuge. But it but it and it makes such difference.
Scott BennerYeah.
SuzanneHuge impact. Right? And I think sometimes it'll give myself enough insulin at dinner too, but that's a separate issue. But
Scott BennerYou're miscounting carbs, or are you trying to
SuzanneNo. You know what I think it is, Scott? It's the magic of fat and protein.
Scott BennerOh, you're getting a rise later. Yeah.
SuzanneYeah. Yeah. I haven't figured that out yet. That's yeah. I haven't quite mastered that.
Scott BennerThere's not a lot
Suzanneof I still find it confusing despite listening to the podcast. I still find it a little complicated. But
Scott BennerBoneless for your carbs, wait forty five minutes, and bolus for the fat.
SuzanneYeah. Okay. And and if and and still do that on top of my I forget what Tandem calls it. I still sometimes speak Medtronic from years ago. Dual wave.
SuzanneSquare wave
Scott Bennerbolus. Whatever they used to call
Suzanneit for Medtronic. Extended bolus. That's what it is on Tandem.
Scott BennerYeah. I mean, you could give yourself an extended bolus on tandem. Just do that instead.
SuzanneI do. But you know what? I still think I need that bump. I think you're absolutely right. I think I need that bump later.
Scott BennerYeah.
SuzanneI think that's what I'm missing, actually.
Scott BennerThere's a little estimator on my website if you wanna look at it. Did you Awesome. Have you tried it?
SuzanneYeah. I actually
Scott BennerGood. Did it happen?
SuzanneBut, again
Scott BennerThen you gotta
Suzannemake very time chaos. Yeah.
Scott BennerYeah. Well, figure them out ahead of time. That's not that's not crazy. Right? Like, what if you
Suzannespend crazy.
Scott BennerFifteen minutes thinking about five meals that, you know, you're gonna have this week and do the carbs and the fat and the protein for them, and then write them down on a piece of paper. Then when you go to eco, this is how I'm gonna bowl this for it. And then maybe you'll just become calm. I don't know. I'm just spitballing.
SuzanneA great idea. You make it yeah. No. That's that's a really simple solution, actually. I mean, just Yeah.
Scott BennerYou know what they said when they made those sneakers for Michael Jordan? Just do it. Just do it. Yeah. Yeah.
SuzanneExactly. Yeah. You'll be Just do it. Yeah. No.
SuzanneThat's a good that's good.
Medical Alerts and Pillboxes
Scott BennerBy the way, your episode is called fancy pillbox. And Oh.
SuzanneI wish I could show it to you. I actually have two fancy pillboxes too, by the way. Do you really? I do because I carry pills. I have, like, this really nice one that I that I spent way too much money on but I was like, hey, I just got Addison's.
SuzanneLike, I'm getting all this stuff. And so I've got like, you know, these Etsy bags to keep my steroid injection stuff in it and so I have this like super fancy pillbox to go in that bag to carry pills in addition to the injectable. And then I've got my awesome Amazon one that has, like, separated four times a day. Yeah.
Scott BennerYou girls are fantastic. I got Addison's. Oh, I can buy a bag.
SuzanneWell, no. It wasn't quite like that. Let me just to
Scott Bennerbe honest. It was. You were in the doctor's office, like, does this come with something I have to carry? Because I need a No.
SuzanneI promise it wasn't quite like that. But, but I did have to get, like, two customizable bags to say, like, steroid dependent. You know, it's got my husband's number on it. And and now I think I wanna get a seat belt cover. Okay.
SuzanneBecause, again, that's my biggest fear is being in a car accident.
Scott BennerYeah. Yeah. Yeah. Yeah. Well, the seat belt cover
SuzanneMakes sense.
Scott BennerWhat I hear from EMT though is they don't know if the person driving the car is the person the seat belt cover was put on for.
SuzanneAre you kidding me? Well, then they would look at my wrist. They would look at something.
Scott BennerHopefully. Yeah. Yeah. Yeah.
SuzanneHopefully. Hopefully, they're not idiots.
Scott BennerWell, I don't know though, but imagine you're not the you know, people drive you other people's cars. Imagine if you if your husband drives your car, he drives into a wall. Oh. He's unconscious, and they are like, oh, this guy's, you know, got Addison's.
SuzanneIt wouldn't be on the seat belt. Say, I'm gonna have to take it with me.
Scott BennerLike, a towel? Forehead.
SuzanneYeah. Yeah. I'm gonna have
Scott Bennerto say, I'm gonna have to
Suzannecarry one more thing now.
Scott BennerRight? Also, I've had EMTs tell me tattoos are not a valuable way to do medical alert.
SuzanneYeah. I don't want
Scott Bennera or bracelets.
SuzanneYeah. I don't want a tattoo. Because I'm afraid when when I get older, it's gonna get all wrinkled.
Scott BennerAnd nasty. Definitely gonna happen. Yeah.
SuzanneYeah. I don't want a tattoo.
Scott BennerYeah. Okay. Well, listen. You were able to stay on long enough to get a two part episode.
SuzanneOh, really?
Scott BennerYeah. I think so. Time wide. I can't I can't do an hour and a half and a while. Is helpful to someone.
Scott BennerWell, first of all
Suzannehears it appreciates it.
Scott BennerIt's gonna be helpful. You're entertaining. I was fantastic today. You were great. I've been good lately.
SuzanneAlways.
Scott BennerCan I just say, I I'll say something that'll sound ridiculous? I've already pompously, told people to stay off of social media, just let me do it, which is not what I meant, but I'm imagining someone's gonna hear it that way. But I listened to an episode of the podcast today, which I don't do all the time called school ties when it came out, like, yesterday or today or something. Okay. And I was listening to it, and I have to tell you, I was excellent.
SuzanneWas Oh, good.
Scott BennerNo. No. I, like, listened to it. Was like, this is great.
SuzanneListen and think you're not?
Scott BennerYeah. Yeah. Sometimes. Interesting. Yeah. Sometimes I'm tired or I just the wrong like, I'll listen back sometimes and somebody will say something. And as a as the person listening, I'll go, oh, this is the follow-up question, and then that's not the one I ask. And I think, you blew it. Like, that was such a good opportunity to say this, and you didn't do it.
SuzanneThat's hindsight. That's hindsight.
Scott BennerYeah. A little bit. But I I don't know. There's just there's something about that person. That woman and I got along well.
Scott BennerHer attitude and mind meshed well. I thought your attitude and mind meshed well too. Yeah. There's sometimes I feel like I'm
Suzannefighting There's vibe.
Scott BennerYeah. Yeah. There's sometimes I think they're great episodes, but there isn't a vibe, and then it feels more interviewy, and this feels more conversational. Yeah. Like, so
SuzanneWhich you said it will. You said it would.
Scott BennerWell, yeah. I could tell. Anyway Yeah.
SuzanneThank you.
Scott BennerYou were fantastic. I really do appreciate this. I I wish you nothing but luck. I don't know a ton about Addison's other than what I've heard through, you know, a friend and a couple of people I've seen online. And I I know it's a it's a bit of a slog, so I wish you nothing but the best.
SuzanneAnd Thank you.
Scott BennerYeah. You Appreciate Scott. Very welcome. Hold on one second for me. I'll tell you about all those people who I wouldn't name on the podcast.
SuzanneThanks.
Scott BennerYep. A huge thanks to today's sponsor, AbleNow. AbleNow offers tax advantaged able accounts for eligible individuals with disabilities. If you or your child lives with diabetes, you may qualify because of ongoing medical needs. With Able Now, you can save for a wide range of disability related expenses without affecting eligibility for certain disability benefits such as Medicaid.
Scott BennerAnd thanks to recent federal law updates, more people are eligible than ever before. Learn more and check your eligibility at ablenow.com. You spell that ablenow.com. There's links in the show notes and links at juiceboxpodcast.com. I'd like to thank the blood glucose meter that my daughter carries, the Kontoor Next Gen blood glucose meter.
Scott BennerLearn more and get started today at kontoornext.com/juicebox. And don't forget, you may be paying more through your insurance right now for the meter you have than you would pay for the contour next gen in cash. There are links in the show notes of the audio app you're listening in right now and links at juiceboxpodcast.com to Contour and all of the sponsors. Thank you so much for listening. I'll be back very soon with another episode of the juice box podcast.
Scott BennerIf 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. Would you like a Christmas card?
Scott BennerIf this is your first time listening to the Juice Box podcast and you'd like to hear more, download Apple Podcasts or Spotify, really any audio app at all. Look for the Juice Box podcast and follow or subscribe. We put out new content every day that you'll enjoy. Wanna learn more about your diabetes management? Go to juiceboxpodcast.com up in the menu and look for Bold Beginnings, the diabetes pro tip series, and much more.
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