Scott Benner 1/24/23 Scott Benner 1/24/23

#831 Best of Juicebox: Bold With Insulin

Episode 11, Bold With Insulin was first published on April 14, 2015.

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Scott Benner 0:00
Hello friends, and welcome to episode 831 of the Juicebox Podcast.

Welcome everyone to the best of the Juicebox Podcast. Today, we'll be highlighting episode 11 titled bold with insulin. And it originally appeared on the Juicebox Podcast on April 14 2015. I asked listeners via the private Facebook group, what their favorite episodes of the podcast were. And a number of people highlighted episode 11. Lauren said I think number 11 bold with insulin really sets the stage for the whole podcast and it's a must listen. Donna said episode 11 was the one that kicked me into gear about making decisions for my care and changing settings and amounts of insulin I needed. The episode will be presented exactly as it was originally, meaning there'll be music in it that you don't hear anymore. My microphones gonna sound different. You'll hear basil the dog snoring in the background, my chair used to Creek all kinds of fun stuff. Anyway, while you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before you make any changes to your healthcare plan or become bold with insulin. And now you know where that came from. Or at least you'll know in a minute. If you have type one diabetes, or are the caregiver of someone with type one, please take a few moments to go to T one D exchange.org Ford slash juicebox. When you get there, join the registry, complete the survey. And when you do, you will have helped type one diabetes research to move forward. It's that simple. It's completely HIPAA compliant. And it's absolutely anonymous. T one D exchange.org. Forward slash juicebox. Though this episode doesn't have a sponsor, please remember that Omni pod Dexcom Contour Next One G voc hypo pan ag one from athletic greens. The T one D exchange, US Med and touched by type one are all terrific sponsors of the Juicebox Podcast. And if you need them or you're interested in learning more, there are links to them in the show notes of the audio player you're listening in right now. And at juicebox podcast.com. Okay, we're gonna get going I listened back to this one I thought maybe I'd be embarrassed but honestly, it holds up. Before we begin a brief disclaimer, the medical information on this podcast and on Oregon state.com is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. This information is not intended to be patient education and should not be used as a substitute for professional diagnosis and treatment. You can find the full version of this disclaimer by going to Oregon state.com or juicebox podcast.com scrolling to the bottom and clicking on disclaimer for those of you who have been listening to the podcast since it started, welcome back. And if you were a new listener, thank you for joining us. Let me introduce myself real quickly. My name is Scott Benner. I am the father of a little girl named Arden who has type one diabetes. Arden was diagnosed when she was two years old and is just about ready to turn 11 I write the diabetes parenting blog called Arden's Day, which you can find it on the state.com also on Facebook, Twitter, Instagram, what else? Pinterest, if it's social media, and it's Arden's day, I think it's probably me. Okay, welcome to episode 11 of the Juicebox Podcast. I appreciate you coming by. Today we are going to talk about insulin. So there's not going to be any guests on this episode. Although you may hear basil snoring in the background Basil is Arden's little eight month old puppy who she named after her Basal rate, and he is sound asleep and snoring away if you hear him. I apologize. Okay, so I want to talk about insulin because it's the main component to a lower agency and lower blood sugars in general and going to speak just from my personal experience. Again, nothing here is advice. And you certainly should talk to your doctor before trying anything that you may hear, hear, hear, hear, I hate when I say Hear hear that you may hear on the podcast. Okay. So let's go back to Arden being diagnosed. She's two years old. We're in the hospital. It's of course, incredibly stressful and frightening. And not something you were expecting certainly wasn't something we were expecting. Added Bad news, good news, bad news, good news back and forth all day long, right? Here's the bad news. Your child's just been diagnosed with an incurable autoimmune disease, their pancreas doesn't work anymore. It's no longer making insulin. But hey, here's the good news. There's man made insulin. So unlike prior to the finding of insulin, your child's not just going to die in a couple of days, you're going to be able to manage diabetes with insulin Well, yay, that's fantastic. Small pause from the doctor. Insulin, however, is very dangerous. And if you use too much of it, it could cause dizziness, seizure and even death. Well, what? Uh, okay, great. So let me get it straight, disease. incurable. pancreas doesn't make insulin, but don't worry here some insulin, but be really careful because the insulin could kill you. Okay, I'm clear. Everything's good. Let's go home. Now I've got it. That's pretty much how I felt right? You know, I'm sure a lot of you felt the same way as well. Here's this great medication. It's clearly a lifesaver, but used incorrectly. It's dangerous. But that's okay. They'll tell me what to do. There's probably instructions, right? Except that you know, the instructions that give you a very general and don't work day to day, let alone person to person, it's their guidelines to get you started. And it doesn't take you long to figure out that. Living with type one diabetes is probably just as much about kind of the vibe of it, as it is about the science. It's probably, I mean, honestly, it's probably three times as much. You know, the vibe is such a huge part of how I manage Ardens type one, just my feeling about like, I think our blood sugar is gonna go high here, I think it's gonna go low. You know, yesterday, in a similar situation, this happened. It's trying to calculate, you know, what, not just how many carbs, but what kind of carbs? How long are they going to stay in our system, you know, how much exercise that she got is that going to affect it, it's a little bit more about the magic than it is about the science and the numbers below when you first are diagnosed. Here's the numbers. If this happens, do this. Inject this much insulin, if this happens, if you get low, you want to take in this many carbs. Those those directions from your doctor are starting points. They're jumping in spots. I think the problem is that and very rightfully so you're told to err a little on the side of caution with the blood sugar right stay a little higher. So you don't experience a seizure or a low blood sugar incident. i It's insulting that they call them low blood sugar incidences I've seen two of them their seizures. But the idea right is, you know, stay a little hide or avoid that. Well, I know for me, you know, back then 2006, no glucose monitor technology, not even an insulin pump, just injecting insulin with syringes. I was probably airing more on the side of caution than I probably should have been. And the more you did it, excuse me, the more you let a high blood sugar be because it felt safe, the more normal it got. And you start thinking well, you know, what's wrong with 151 50? is fine. 150 is not fine. I mean, it is but it isn't a my blood sugar right now I don't have diabetes, my blood sugar right now is probably 96. Maybe it's 100. Who knows, maybe it's at the point is, is that there's a vast difference between 90 or 100 and 150 or 200, or wherever it is you're comfortable. So I'm actually going to click over to a website here for a second to talk about this next little bit. So at the moment, I'm on Accu check.com, which is ACC u dash, c h e k.com. I'll put a link in the show notes. But I'm here because they've got this little agency calculator. So what do we just say? What is my blood sugar? Probably right now, let's just say 100? Well, actually, I have to say 100. Because accurate checks. Because that key checks calculator only goes down to 100. So if your average blood sugar is 100 Your average a one C for a three month period should be about 5.1. But what if, like me, you were thinking, well, I'll just stay at 150 Because that seems safer. Well, now you're a one C goes from 5.1 to 6.85. You're almost in the sevens now, because you're erring on the side of caution. But you know, it's impossible to keep a blood sugar stable, you know, without vacillating up and down for very long. So what happens when your 150 becomes I don't know 170? Well, then the a one C

is obviously going to take a leap and you hear me click around on the web page. Now it's 7.55 I. So when I'm online, and I see people who have newer diagnose children, and they say, Well, I, you know, I put my kid to bed at 180, because I'm scared of what's going to happen overnight. And I've seen that that's a number that that people seem to like, right? It's high enough over where they think they're gonna have a problem. But under 200, just enough that it doesn't really kick your guilt in an average blood sugar of 180 is an average a one C of 7.89. So we've gone from 105.11 for your a one C, up to 180 7.89. That is a huge, huge difference. So you can see that cutting out just 10 points from a blood sugar, right seven, let's do 180 at 7.89. I'll change it to 170. And you'll see it's 7.55. Well, that's not bad. Well, that makes you think, well, if I could do 170, I could probably do 150, what's 150 6.85 Things are getting better. I think the problem is that you're you're told to err on the side of caution. And before you know what that becomes comfortable. And before you know it that comfort turns into a habit. And then it becomes difficult to break because of the fear that you feel. So I will tell you that I'm comfortable with art and sleeping overnight with a blood sugar of 80. I don't have a problem with AD. And I can't even on this website how you would add is because because the website will only go down to 100 I'm assuming for legal reasons. So let's just talk about Arden's last day one se Arden's last day one C was after Christmas. So end of 2014 It was 5.9 a different calculator on diabetes.org, which is the ADA website tells me that that I'm a one C percentage of 5.9 is an average blood sugar of 123. So you can see that even though overnight, I'm happy with 80. And trust me Arden will sleep overnight. Most nights at 90, you know down there, why are Dexcom alarm doesn't sound until she's under 80 You can still see that her average blood sugar is still 123. And why is that I sit and I think that's because I think when people think about blood sugars, and I know that we have a Dexcom CGM. And not everyone does. Not everyone has the benefit of that really great technology. But when you think about blood sugars, you think about this rolling graph line, you know, and if you have a great agency, I think people imagined that your graph must be very steady and very low constantly. And I just want to tell you that that's not the case. Arden's graph is not steady. Not nearly as steady as I'd like it to be. And it's not always low. But what I do is I take advantage of the overnight hours, because if she goes to bed and Arden's not a she doesn't go to bed early, she's going to be 11. But I think garden goes to bed between about 930 and 10 o'clock on a school night. And she gets up in the morning around seven. So let's say she goes to bed at 10 and wakes up at seven. So I'm going to just do some quick math here. That sounds to me like nine hours 678 It is it's nine hours I've, I've I've done the math in my head. So for nine hours, if I can keep Arden's blood sugar at, I don't know, we'll say 100 because the calculator says 100 That that's gives me some leeway for the rest of the day to not be able to get a Pre-Bolus on for lunch in time or to miscalculate some carbs at dinner, or to have some sort of a, you know, a hormone induced rise that that ends up taking up, you know, two hours of the day where your blood sugar is up at 150 and you can't do anything about it or it's a 200 and you're pouring on insulin trying to get it down. That's why it's an average. So when we average those 24 hours back together, I will tell you that Arden's are Arden's graph usually gets two blips a day where her blood sugar goes up and it takes us a little while to get it back down. But then we have nine hours at night where it's you know, most nights without you know, listen, growth hormones, things that go wrong could definitely be higher. But on the average every month, most nights at 90 100 I try to keep her down there. I know that sounds scary to some people. But that's a that's a fear that at some point you I think you have to get past because because you can't protect constantly for today and never think about tomorrow. You just can't do that. Because the long term effects and You know, this is something that we don't really talk about a lot because it's sad and uncomfortable. But we all know what the long term effects of, of type one diabetes can be if you have high blood sugars, and they are significant and life altering and life changing and life ending they can be. So you have to find yourself a balance, you have to find a number that that you think I can live with this, this won't make me neurotic, or I'll still be able to sleep. Now, you know if your insurance can cover it, the Dexcom share really does, really does change how overnights happen because now you're getting an alarm back in your room. If your blood sugars are going down or get below or above a certain level. It is a game changer I'm not going to put in otherwise. And prior to having a Dexcom CGM, I was not as bold with these blood sugar's as I am now. And you do have to be aggressive. But cautious. You have to be respectful without being afraid. And the technology helps a lot. So it's a good example of being aggressive. You know, I'll just use today at lunchtime Arden's blood sugar 101 Diagonal down a half an hour before we're going to Pre-Bolus for lunch. So there's a lot of stuff here to think about. But 1030 We Pre-Bolus for lunch when Arden's at school, but she doesn't actually start eating till about 1055. So if she's 100, diagonal down at 10 o'clock, it was fair to say that by 1030, she was going to be a little lower, and wasn't going to give me a lot of latitude to do a big Pre-Bolus Like I would like to do. So I had her eat, like 10 carbs of a piece of candy, just stick a piece of candy in her mouth while she was at school. And when 1030 came along Dexcom had her blood sugar at 85 and steady. Now I knew the sugar from the candy was in there and we were gonna get a bounce at some point. But it wasn't there yet. So I couldn't, you know, I made my calculations like it wasn't there. So I gave her her insulin for lunch 1030 And we didn't extend it Bolus gave her 50% of it right away at 1030 and told the pod the power on the pod give the other 50% as an extended Bolus over the next 30 minutes or so that basically she's getting a Pre-Bolus of half of the insulin and at 1055 when she goes and sits down with her food. The rest of the insulin is in not active yet probably but it's in and it's going not five minutes after 11 i i get a warning on my on my phone from her Dexcom share her blood sugar is hit her high her high watermark when we don't we try not to go above 160. And it's straight up. Now. Okay, that some of that insulin hasn't been in for very long, and the bolusing more right now is probably not what a doctor would tell you to do. It's not probably not what a doctor would tell you to do. It's definitely not what a doctor would tell you to do. They would tell you that insulin is not even live yet. It's hasn't even started working some of it you extended it don't do anything. Don't do anything would be the call the day. But at 169 Straight up which means her blood sugar's rising at two points per minute or greater. I texted Arden I said I want to increase your Basal by 95% for half an hour. And I want to Bolus a half a unit my half a unit is just my blanket. I don't like the way the arrows going up Bolus arrows going up when I don't think it should. Half a unit and y half unit half unit because you know a juice box is for art and 15 carbs about point eight five insulin maybe one unit of insulin. So let's let's Bolus the equivalent of a juice box because I think I'm right history is telling me that she shouldn't be going up this quickly after we've Bolus for lunch. But if she does if it is for you know just a blip and it's going to come back down. Then we'll cover it with a juice box so I don't want to give so much insulin that a juice box wouldn't fix things if your blood sugar went down quickly. But I want to give enough to stop that arrow I want to stop that up arrow I am aggressive about stopping up arrows and you know in the in the Oh what's this one's got Jim's

will be texting in a second if you hear that in the background but her blood sugar is now it's an hour and a half. Excuse me two hours since that Pre-Bolus and her blood sugar is 150 and I know that part probably sounds pretty good 152 hours after her lunchtime Bolus at school, but I really wish it was 130 right now. Now with Jim coming up, I'm going to admit to you probably not going to do much about it. I don't think I would Bolus while there was still active insulin on the way to gym. That doesn't sound not not in a 150 If her blood sugar was 200 Right now, I would absolutely Bolus but not at 150. So does that sound aggressive to you? Does it sound scary? It did to me at one point. And I'm sure it does to you. Now, again, the technology helps having a CGM will make it easier for you. Because you'll see a fall before it happens with any luck. And it's not not as scary. So the doctor tells you to err on the side of caution. It's good advice. But then it becomes comfortable and you probably live inside of those higher blood sugar's much longer than you could, you know, you have to change, you know, you need to be more aggressive. You know, the A one sees up because you're not using enough insulin or because you're erring on the side of caution too much. But you have to find, I think there's a big difference between when you're ready to make that decision. And when you're comfortable making that decision. And I don't know that you're ever going to be comfortable making the decision ready is, when in your mind you say to yourself, I I understand that my child's blood sugars are higher, because I'm not using enough insulin, I understand that the onesies are higher than I want them to be because I'm not using enough insulin. I don't think you're going to be comfortable using more. But I think I can give you a couple of tricks to you know, get yourself there. Because the comfort comes later. Obviously after you do it a number of times and nothing goes wrong, you become more comfortable, you be a little more bold and you're pushing you're pushing your push an overnight blood sugar of 80 I want to be really clear would have scared the crap out of me before a CGM, I never would have done that. But having the ability to see a blood sugar falling or rising is is a game changer. So once you're ready, once you understand that you need to be doing this do it incrementally, you know whatever that means if if you're seeing that a dinnertime Bolus is a certain number, just randomly put a number on it, let's say you're using four units of insulin at dinner, five, six doesn't matter, whatever it is.

And you're seeing high blood sugars. Two hours later, an hour and a half later, we'll just use another half a unit and something like that, and see what that does. You know, just try it. Keep an eye on it. You know if you don't have a CGM test, but but give it a shot. Because I bet what you would find is that after a couple of dinner times, maybe

that half a unit was good. Maybe it was maybe it was what we needed.

Maybe I'll try a little more, maybe you're on a pump, and you can go very incrementally point five at a time. And the next day you try point six over and you get a slightly better result again, and just keep trying to show yourself that it's not the end of the world, show yourself, it's not going to cause some great problem. It's not like your blood sugars are at 90 and you're trying to get them to 85. Those are those are tight tolerances. I'm talking about people who are happy to see a blood sugar of 202 hours after lunch, two hours after you know a meal. People who are looking at a 180 overnight and going hey, it was steady at 180. That's great. Well, what's the difference between study at 180? And study at 130? Go for study at 130. Right? What what are you going to do? I mean, what are you afraid you're afraid it's gonna fall? You're not gonna have time to figure it out. But I mean, everyone's different. But I don't think Arden starts to feel dizzy until she's under 70. So even if you went from 130 to 80, you know, in art and situation, if she goes from 130 to 80 overnight, I'm still in a good space for her. And that's 50 points, 50 points. And we did it before and let's do it again. 6.85 is your average a one see if your blood sugar's 150. If it's 100, it's 5.1. Now, some quick math for me. That's a 1.7 difference in a one see between 150 and 100. So 1.7 for for point for for 50 points, which means that if you can be comfortable at 130 instead of 180 You're That's how far your agency's gonna go down. 1.7 So think about that right now. If your child's a once he is eight, eight, would you be much happier if it was 6.7? What if it was nine would you be more happy if it was seven point And 750 points, we'll do that 50 points will take you down that far. Now that is to me, that's when it hit me. You know, when I started really understanding that I felt well, then I want to shoot for lower. Now, this next bit comes from having a Dexcom receiver, I noticed something. You set a high line and a low line, right? I don't want my blood sugar to go below this. I don't want to go over that. If it does, I want it to alarm. I think when I first got the receiver, it was 250 for the high. And the low was like 130. Like I was like, oh my god under 130. She's low. And one day I realized I do a pretty good job of keeping Arden's blood sugar between 130 and 250. I wonder how much is expectation? That was my question for myself. Except these lines up, these are my expectations for myself. And I'm able to meet these expectations. What if I close the tolerances on my expectations? So I did, I pushed the high number from 250 to 200. And I don't think you're going to need to guess what happened. I was still staying between the lines. Most of the time, I set a new expectation for myself. And I was staying with it. So I pushed it again, I said to myself 190 Just a little bit. What's 190? I could stay there. Well forget 130 is the low let's go to 120. So do you think I could keep her between 190 and 120? Turns out I could. It turns out if you stop and really think about it, the only difference between a blood sugar of 90 and a blood sugar of 190 in your mind is that if 190 starts falling, you have time to do something about it. If 90 starts falling, it's more of a panic situation. Do you want to send your child with a budget of 90 in a car with somebody who doesn't know anything about diabetes? No, you probably don't want to. But if you add education and the ability to speak communication, and Dexcom that you can see the blood sugar as it's happening in case it's beeping away and your kids back and they don't notice it, then all of a sudden 90 is not scary. 90 is completely reasonable. Oh, it's 90 Diagonal down. I'll text the parent, hey, you know what our blood sugar is falling? Can you have a drink half of a juice box? Can you ever take a glucose tablet? Can you do this, you know, whatever your adjustments going to be? It's going to be. So think about what I said there because it's a leap. The only difference between a blood sugar of 190 and 90 in your mind is patting it's time. It's the ability to react without a low. But after years go by, you won't need that much time to react anymore. If you're newly diagnosed, I completely 100% in my heart understand that a 90 blood sugar would could be scary for you. And that you might need that time to make better decisions. But trust me as time goes on, you'll get better and better at this, it's not going to get easier. But you'll get better and better at it. You won't need as much time, it won't seem like a panic situation when a 90 is going down. I don't feel like that anymore. I don't I mean, I don't I cannot remember the last time I panicked about a low blood sugar or even a falling blood sugar. Because I've got so much information right so much time in the simulator that I know what to do to make it stop. I take the information I had from what we've been doing that day, what food we've used, how much insulin we've got going. And I look at historically what it takes to stop but 90 Diagonal down, what it takes to stop is 72 hours down. And I just make that decision, almost without having to think about it and I get if you're not in that spot, you need to be a little higher. But if you just continue to close the tolerances on what you're willing to accept as a blood sugar, then I believe in least in my experience, if you can hit inside of those lines, then just squeeze the lines a little bit. And I bet you'll keep heading. I really I believe you will. Well one second, I have to pause. Before we get back to talking about insulin. I just wanted to let you know that there are a number of ways to listen to the Juicebox Podcast and any podcast. And I want to tell you what some of them are. You can listen through iTunes. That's a simple, easy way to do it. Apple has an app called podcasts that you can download for free from the App Store and you just search for the podcast and that and hit subscribe and you're listening there. You can use stitcher SAP or go to stitcher.com. I have The podcast is also posted on Stitcher. You can listen at Juicebox Podcast inside of each blog post for the episodes is an inline player where you can listen right there. And I'm posting the episodes in Facebook luck with an online player that you don't even have to leave Facebook to listen. So between your web browser and podcast apps, of which there are many, if you have a favorite podcast app, just search us up. There are limitless ways almost to listen to podcasts like the Juicebox Podcast. If you're enjoying the show, I implore you please go to iTunes and leave a review or a rating. It really does help the program be found in searches. Okay, let's get back to talking about insulin, shall we? Talking about this today, because a lot of people on the blog asked me after I write about different things about a one C's and things like that I always hear about like, you know, I always talk about being bold with insulin and being being bold in general with diabetes, and I get a lot of emails, correspondence privately back from people who say things like, you know, I took your advice about being more aggressive, my son's a one C fell, you know, I'm being bolder, it's hard, it's scary, but I'm doing it, I want to thank you. And these are some of the most heartwarming notes that I've received, when I stop and think about when I stop and think about kids who are walking around with in range blood sugars that aren't causing them to feel foggy, because their blood sugar is not high. And I think about their a onesies being more aware they want them in that, what that means for them health wise, and what that means for their parents. Stress wise, I mean, this all, it's just, it's just information that that you want for there to be in the world for people like you to hear. It's more difficult to write about these things, because you feel like everything in writing sort of seems very official. And I don't want people to think that I'm saying do this, and do this and do this and everything will be fine, because that's certainly not true. Your diabetes will absolutely vary from person to person. And it is something that takes time for you to kind of figure out the flow of, you know, to get the vibe of your child's diabetes and, and the things that affect it and don't affect it. But I really felt like the podcast was a place to talk about this, because you can hear my voice when I'm telling you like, look, this isn't advice. This is just what I do. This is how I feel about it. And I believe that if you could try to feel a little bit about this too, in a similar way that you might have some similar luck with with with a little bit of luck. But what pushed me over the edge of the podcast, besides the emails was Arden's last day one see 5.9 right around Christmas time. And we go in and the our nurse practitioner comes in the room with the with a test result. And she says My God, you you decreased not a lot. I think we went from six to to 5.9. But any decrease is amazing. And she says

I can't tell you how many people at the holiday time a year. I tell them oh, it only went up a point. It's okay. You did good. She's like you don't see decreases at the holidays because of all the extra meals and food. How did you do that? And I thought about it for a second because I didn't do anything differently than I did the quarter before. All I did was act aggressively, not wildly and appropriately, but aggressively. Arrow up I want to stop that arrow high blood sugar, I want to get it back down as soon as possible. I would much rather get a blood sugar down quickly than to watch it exist for three hours and bring it down slowly. I mean, the less time with the high blood sugar in my opinion, the better. So that's how we got 5.9 We were just bold we were aggressive we weren't scared. And when the times came where we did use a little too much insulin we combative the insulin with you know something that worked quickly for Arden juice a lot of the time just to kind of go over everything. One last time. Aggressive but cautious. Respectful but not afraid. Definitely have to lean on the technology. I genuinely don't know how to give you advice about doing this without a Dexcom CGM. I feel like it would be impossible for me to do. overnights find a way to be comfortable with a steady lower than what you're used to now because there's so much a one see that can get cut out. Like we talked about earlier difference between 180 and 130 is huge. Difference between 130 and 80. Same difference. Stop and think about that for a minute at some point Arden's blood sugar overnight was 180 and now I'm comfortable with it at 80. It's obviously not always one ad, obviously isn't always ad. But those are our goals, right? There's what we're shooting for 100 points 100 point difference. And that's the story of how Ardens eight, one si went from nine to eight to seven to 5.9. And don't get me wrong, not just insulin. There were a couple of meals that things we cut out of eating. Arden used to eat cereal for breakfast, she doesn't eat anymore. Here's a great blog about Froot Loops on on origins de.com Where Arlen came out of an endo appointment and just asked me one day, how can I get my agency to come down, and I said, you could probably stop eating cereal in the morning that would help and we got a big reduction out of that. So it's not just insulin and being aggressive. There's basil up from his nap. It's not it's not just insulin, and being aggressive is also diet and exercise and a lot of other things. But But anyway, while my my nurse practitioner I talked like she's my nurse practitioner, while Ardens nurse practitioners asking me how do we get a reduction at the holidays. And I explained to her, she paused and she looked so serious and thoughtful and sad all at the same time. And she said, getting people to not be afraid of insulin is probably the hardest thing I do. So then I decided to make a podcast about it. And it looks like we're going to take a little break here while basil finishes barking. And I'm going to come back in a second and just talk about Apple Watch for a second. And a couple little news things. I'm gonna let you out of here and get back to your life. Okay, I'm back and basil is calm again. You know, I just thought this would be interesting, because I recorded this. You know, basically while Arden was at lunch at school, and you remember earlier in the episode, I told you we Pre-Bolus at 1030 in the morning, and at 11 She was 160 something straight up and I actually gave her more insulin than it is now. 110 my larger dog is now moving around. It's now 110 Her blood sugar, I'm looking at my follow up for her Dexcom share to her blood sugar is 97 Diagonal down. And I expect that to level off in the next few minutes. You know, hopefully by the time she's 85. That's That's my goal. But just so you can really see it in real time. You know, she was what I say 100 And something 203 Or so diagonal down at 10. We took in some carbs. By the time it was ready to Pre-Bolus at 1030. She was 85 and steady. I figured that the sugar from the candy hadn't kicked in yet. I did a extended Bolus 50% of the insulin at 1030. The other 50% went in over a half an hour at 11 o'clock she was eating her blood sugar was 160 something straight up, I gave another half of a unit just a blind half of a unit. And now you know 1130 12 almost three hours since the beginning of the extended Bolus, she's at 97 Diagonal down. And I do believe that I that diagonal down will level out. And if it doesn't, then we'll just take a few carbs in here. And her blood sugar will probably stay around 110 For the rest of the school day for the two hours before she comes home. So it's a good look at what aggressive means, you know, the difference between the 97 after lunch and what probably without that extra half of unit would have been more like 150 And you know, we've talked about that 50 points is 50 points is a lot. Okay, so hey, I hope you enjoyed talking about insulin. We can do it again in the future if you'd like to send me an email or hop on the blog and let me know what you thought if you want to talk more about it or about different topics. I'd love to know your thoughts. We are we me it's on by myself. It's a blog I wrote by myself and I said we I have two more interviews coming up for for some upcoming shows. I'm going to be talking to a mom from Canada, whose child lives with type one diabetes and celiac disease. And I'm going to be talking to Karen who runs diabetes blog week about diabetes blog week. So that's that's coming up. I ordered an Apple Watch. Yay. Yay. There it is. It was expensive. Here's what happened. I'm up with a high blood sugar at night. High I think she was like 180 and I couldn't get it to move is one of those like I felt like I could have poured the insulin over Arden's head, her blood sugar wouldn't have gone down. So I'm struggling with this one at trying to get it down. And I'm running out of ways to keep myself amused. I end up on Twitter. And I see on Twitter and there's not a lot of people tweeting by the way at 330 in the morning, but I see on Twitter, that there's some macroom or websites are saying that the Apple Watches are about the stock's about to run out they're gonna push the ship date and I feel like get out of here like I did not expect that. So I went on Apple's website threw my iPad through my like Apple Store app, which works too well, because you can pay by putting your thumbprint on the, on the home button. And I had never really looked at the watches and thought, Oh, I wonder which one I would buy. But there I am laying in bed trying to stay awake 333 40 In the morning, and I'm swiping through watches. And I see one that I think, Hmm, that one looks attractive, I think I would actually wear that watch. And then I go back to Twitter. And they're talking about some watches aren't shipping till June now, you know, it's April 24. With the ship they then they were saying four to six weeks after that. Now all of a sudden, they were saying June and I thought I'm just gonna buy one because if, if I don't want it, like I'll just sell it like I'll probably be able to sell it on eBay and make money. So it didn't scare me a lot to buy it. Anyway, I picked one that I liked. And I stuck my thumbprint on the on the home button and just like that, I'm going to be getting one. They say four to six weeks, I think I'm supposed to get around May 13. So I will be back in the end by the end of May. Talking about Dexcom share to an Apple Watch and how they integrate together. And so I just thought that might be something you might be interested in. My phone is ringing Hello.

Unknown Speaker 41:22
Hello. Hello. Hi, good afternoon. My name is Robert calling you from Green Energy Solar. Am I speaking with the homeowner?

Scott Benner 41:30
You are Robert but I do not have any interest in solar energy for my house. But thank you for calling. And could you while I've got you put me on your do not call us please. That sounds like a no he just hung up. Sorry about that. I'm not against solar energy. I just don't think it's a perfected thing yet. And I'm really scared about putting like panels over the roof of my house because I feel like what happens when like the roof underneath gets weaker. Anyway, I have too many questions about I like the idea of solar. I don't like the idea of putting panels on my house. I don't feel like I have to explain this to you. Okay, so I'm going to be talking about Apple Watch and integration with Dexcom share to probably by the end of May. Hopefully I'll get a little sooner and I can do it sooner. But I have to admit it does look looks pretty tasty. So we'll say You know, I want to mention too that. This past weekend, Arden had a softball tournament, she played three softball games in one day. She got up in the morning at 6am. We drove to the field, she had to be there at 745 It was an hour away. They practiced and worked out until 845. When the first game started, she played a game at 845 then they wouldn't play at the playground. Then we went to lunch. Then we came back they played another game around noon 1230. Then they played another game at five o'clock. And then we didn't get home until eight that night. I think we were out of the house for almost 13 hours. And I can't say enough and I am not being paid to say this but that Dexcom share too. I don't think Arden and I spoke face to face about her diabetes more than about three times the entire day. And honestly one of those times was me throwing a juice box into the dugout and saying to her drink half of it. I saw her rip the straw off. She punched it in, drank half of it. She stuck the other half underneath of the bench. And she went right back out on the field again, I think that was for a blood sugar that looked very steady at 90, which I knew wasn't going to last in the middle of all that exercise. But she had a lot of adrenaline going early on so I wasn't quite sure what to do. And by the time you know she went she went right back out on the field. She was fine. She never got below 75 Ooh, I just watched Arden's blood sugar 91 and steady say 91 in study two hours and 45 minutes after the first Pre-Bolus Two hours and 15 minutes since the point five extra unit we gave her when she was 160 Straight up at lunch. I'm sorry, I'm jumping around but I know if you're listening you're following so Dexcom chair to made the softball tournament. A delight. I really want to say that diabetes was not almost any consideration for us during the day she even when we were at a restaurant at lunchtime. Arden had a season she's a real she's not a she's not strictly a vegetarian, but aren't it's a lot of vegetables. But she also eats a lot of other stuff. So at lunch, she had a Caesar salad. And when she was done she's like, can I the churros with the chocolate sauce? And I was like yeah, sure. When I was thinking like God, no, please don't do that. But she did. And so excuse me we Bolus a completely made up number that I just pulled out of my butt. And I thought I'll be a little heavy handed here and we'll watch She with the CGM. I ended up giving her a little too much insulin and she I think she drank a half a juice box before the second game started. But she had churros at lunch. So, like I said, it was a great day. And diabetes was hardly a part of it. It was in huge thanks to Dexcom Dexcom share to RT and I you know, I never had to walk up to her when she was with her friends and ask you about our blood sugar. I was looking on my phone, saying, you know, by the time we were talking about this next week, I guess I'll be looking on my watch. Really just a game changer. I don't want to call it a lifesaver, although at night I think it is but a real game changer. Okay, so Apple Watch. That sounds pretty cool. We're gonna be talking about diabetes blog week coming up on the on the podcast pretty soon. And speaking to a mom, like I said, Child has celiac and type one, I don't have any frame of reference for celiac disease. So I think that's going to be really interesting to learn about, from somebody who's living through it. You know what, let's make it a short one today. Juicebox Podcast is something that I'm really enjoying doing. And I hope that you are enjoying listening to it. I have every intention of continuing on. I think it is a great standalone piece. And I think it's a wonderful addition to Arden state.com. So, you know, check out my type one diabetes parenting blog, Arden state.com Please leave a review for the Juicebox Podcast on iTunes. And subscribe subscribing might be more important than reviewing. But if you can do both huge. You know what the music for the Juicebox Podcast is written and performed by Sydney Mueller. And I love saying that because Sydney is she is the greatest and I can't believe she was able to write such great music for my for my new podcast. That's it except go to the blog and Arden state.com and check out the tutorial for how to use the podcast if you don't really know how to do it, although you're listening to it now. So that doesn't make a whole ton of sense. Basically, you want to bark again. Anybody? Dogs? sure now that I'm done, everybody's quiet

thank you so much for listening to best of juicebox with me today. If you have a suggestion for Best of go to the blog, and send me an email. I know I just said the blog URL is Arden's de.com. It used to be and still if you type it in the browser, it'll forward you to the website, but the website is at juicebox podcast.com. So if you have a suggestion for Best of go over there, generate an email and send it to me. I'd love to hear what you think. And if you want to include a couple of thoughts about why the episode you're suggesting, should be on Best of include that in the email as well. If you're wondering, Where's this Facebook page that everybody got to do this on? Well, that's Juicebox Podcast type one diabetes on Facebook, over 33,000 members, everyone in there is talking about insulin and diabetes and you would just love it Juicebox Podcast type one diabetes on Facebook

#830 Defining Diabetes: MDI

Scott and Jenny Smith define diabetes terms In this Defining Diabetes episode, Scott and Jenny define MDI.

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Scott Benner 0:00
Hello friends, and welcome to episode 830 of the Juicebox Podcast.

In this episode of defining diabetes, Jenny Smith and I are going to define m D i multiple daily injections. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. If you're enjoying Jenny, and you'd like to hire her, you can she works at integrated diabetes.com. Are you a US citizen who has type one diabetes, or is the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juice box and fill out the survey when you complete the survey. You have helped somebody living with diabetes, you're moving diabetes research forward, and you may just help yourself T one D exchange.org. Forward slash juicebox. I have an unprecedented amount of time before the music stops. Let me just tell you, thank you for listening to the show. And if you're really enjoying it, leave a beautiful five star review and a rating wherever you listen. Great reviews, help other people to find the show. So I'm going to say something really crazy here. Because every time this is so embarrassing. Every time I must have tricked myself out of it. Every time I talk about defining diabetes, what do I say to you? I'm like, I tell a story about the person who said I didn't know that I was MDI until I listened to the show. Well, that experience must have tricked my brain into believing this is so embarrassing that we had done a defining diabetes episode on MDI, which in 46 episodes of it, we have never done do. It's so embarrassing.

Unknown Speaker 2:11
I feel bad that

Scott Benner 2:15
terrible. And so I really think that I just assumed we did because of that one note, until I started listening to your podcast. I didn't know I was doing MDI. And then I've been using it for years is an example of why the defining diabetes series is so important. And yet there's no MDI episode of the defining diabetes. I'm

Jennifer Smith, CDE 2:33
curious where we did define it, then since we clearly since this person was finally like, well, I get what that means now. So we must have defined it within something else.

Scott Benner 2:43
There's an all about MDI episode and protests which people yell at me because they say it's mostly about pumping. But, but I gotta tell you, describing MDI only takes about three seconds. So it's even the management of it, there's not a lot of detail to give to somebody, you know, that really,

Jennifer Smith, CDE 2:59
although I think in terms of detail, I mean, MDI, multiple daily injections, right? Multiple, take it as you will, multiple multiple could be just exactly the way that your doctor said to take it with, you know, each meal, you take your rapid acting insulin, and then you take your Basal insulin one time a day, a defined time of the day, multiple could really be multiple multiple, it could be that you're really on top of it, you don't want a pump, and so you you, I don't want to say micromanage in terms of like a bad connotation to that. But like you micromanage you dose a little bit, you dose a little more. And that's how you learn to manage things. And it works for you. Yeah, so it could be many multiple injections.

Scott Benner 3:46
I would not call it micromanaging. I would say that in the past, there was an expectation for health and outcomes. And if you did more work than that, doctors would have the inclination to tell you that you're micromanaging. And don't worry, it's never gonna get better than this. But that's a different world than this is right now. Correct? I'll tell you. I'll tell you how little MDI has been defined by anybody. Googling MDI meaning gets you with minority depository Institute's, which is an FDIC phrase in the urban dictionary, it says, oh, excuse me, there's another one that says medically determined impairment, multiple Document Interface, metered dose inhaler. You don't get i on the first find it on the first return page of of Google, there's no no mention of it. I have to add the word diabetes.

Jennifer Smith, CDE 4:45
I was gonna say either diabetes or maybe insulin like MDI insulin, I bet it would come up

Scott Benner 4:50
quick. So NIH, has MDI is multiple daily doses of insulin. They're putting in an extra D but not giving it to You double D but single day? That happens to a lot of ladies, doesn't it? Nobody ever knows their bra size really? Right? Don't you always hear women saying I'm never wearing the right bra size? Well,

Jennifer Smith, CDE 5:11
unless you really get like fitted or if you really look at how you're supposed to actually measure to determine what your cup size truly is, then yeah, I mean, that's the reason that many times when you go in, I mean just giving a brand to Victoria's Secret, they will often ask if you've ever been accurately measured for the right size,

Scott Benner 5:36
Jennifer make this the most popular episode I've ever put up until right now. Well, and this is interesting, still, it's limited. And I ah, multiple daily doses of insulin, which is not it's multiple, it's multiple daily injections is how we're talking about it. Most common method for intensive insulin treatment of type one diabetes is also becoming more popular type twos. That's from the NIH from 2017. The next return is from Medtronic. It's interesting, really, yeah, it's really interesting. I guess this is really something that just

Jennifer Smith, CDE 6:15
I wonder if Medtronic has it in there, mainly because, I mean, they're one of the oldest pump

Scott Benner 6:22
companies. I'm gonna look. Yeah, maybe it's just buried on their website somewhere. And it's

Jennifer Smith, CDE 6:27
on their website somewhere in terms of, if you're planning to go for multiple daily injections to a pump, consider the Medtronic pump. No.

Scott Benner 6:36
I'm sure I'll get to that. Again, there's alternatives on the page. But it's iport. It takes oh, by the way, I want to say that in Penn was the sponsor last year and I love them but Medtronic didn't re up with me for in pen so. Oh, yeah. What the hell that's

Jennifer Smith, CDE 6:53
too bad because he pen is a great idea to include in the MDI definition, and I

Scott Benner 6:59
will talk more about it, but somebody, you know, I was ghosted. Oh, so sorry. It wasn't ghosted. They broke up to me to my face.

Jennifer Smith, CDE 7:08
They broke up. They said no, bye. Bye. I'm so sorry. I

Scott Benner 7:11
missed that. I miss Ashley. But anyway, that's just something that only I understand. Okay. So, you know, again, this is them. This is a sales page. They're trying to tell you this is MDI, if you're using it, you might want to try, you know, I port Yeah, the eye port. But I'll tell you a little bit of scrolling says, Hey, there's alternatives MDI, so is this guy, Jenny, is this a money thing? Is this we'd rather you'd be buying a pump and those needles, so we're not going to tell you too much about it. Or, I mean, because it's dark, like the Google returns are stark, not that I can't explain to people what MDI stands for, but

Jennifer Smith, CDE 7:49
it's just in my eye, I would say that there are probably many more people, definitely doing MDI, in the type two realm, then pumps, and because they make up the larger percent of the population of people with diabetes, there still are many more people using injections or MDI. But in, I don't know, is it a money thing? I have no idea. I mean, they have products like in pen, they have products like the eye port, but they don't get a lot of visual. Well, I'm gonna do it all.

Scott Benner 8:29
I'm gonna Google the the actual phrase in a second. But I just want to tell you that, you know, it says, there's other things that people search for that are similar to what yours and I found this so sad. It's got nothing to do with this, but it just says, how much insulin do I need for 300? Blood sugar? It breaks my heart that that's been Googled enough that that's a return just when the word diabetes is Googled. Wow, yeah, that sucks. Okay. Hold on a second, multiple. Daily. Okay, now, maybe this is it. diabetes, UK, well, Medtronic, Medtronic, ensete. I'll be damned. I guess we're gonna have a pretty popular webpage at some point because nobody talks about it. Okay, multiple daily injections. It's like if somebody says, How do you get your insulin? You say I use an insulin pump. How do you get your insulin? I use needles. I do multiple daily injections. So it's, um, is it a viable way, Jenny to live your whole life?

Jennifer Smith, CDE 9:32
Absolutely. Yes. Yeah, absolutely. I think what is missing within it? Is information about how to do that. Well. Because there is in multiple daily injections, there is a lack of precision. Comparative if we're comparing it to a pump, there's a little less precise dosing that you can get, however, can you make it work and have fun Great blood sugars. You can Yeah, absolutely. It's viable. In fact, for for many people that can learn how to use that strategy. Well, you know, you could have really lovely, good control long term, no complications, either just because you're using something that's like, old school or so to speak.

Scott Benner 10:23
Yeah, I genuinely believe the same. And I've said in the past over and over again, that if you're willing to inject a little more, you can do any of the things that we talked about in the podcast with MDR. Absolutely. Yeah. I also think, if I'm being honest, adding a CGM to MDI would would really up your game, you know,

Jennifer Smith, CDE 10:44
absolutely. I think most people, if asked, I'm just assuming here, but it's my, my consideration. Somebody was going to take something technology away from me, I would hand them my pump, I would fiercely hold on to keep she'd be like, Don't

Scott Benner 11:05
I need this, please? I don't know what's happening. You know, I think that I think that if you think about the past, and if I even consider how I was taught to take care of Ardens diabetes, which is test your blood sugar, when she wakes up, give her a correction, if she needs it, test her blood sugar before she eats, use this formula, and don't test her again for three hours. And, you know, I remember back to thinking like, even if like she was like, 153 hours later, like I did it, you know, but Right. But once I got to CGM, I was like, Oh, my God, she went to 300. And then came back to 150. And yay for the 150. But oh, look at that. So I just want to finish by saying that, I think you can manage incredibly well with MDI, but not if you're going to use old school theories and ignore what's happening in between your insulin doses, then, you know, when it's over, and you go, I have a seven a one C, that's not bad. But if your blood sugar was 304 hours in between every one of your meals, then I mean, I know we don't like to use words like this, but that is bad. So you know, you need the right and it's

Jennifer Smith, CDE 12:13
bad. I think, also from a purse from a standpoint, then for that person to think I'm, I'm averaging this number, which is a quality number compared to maybe where somebody was before. But once they have the information, and they see that they're at this number that they've been told is an improvement. But they have this variability that we don't want in the picture, despite an average looking like it's good. I think that information is important to have, and you can only get it with a CGM.

Scott Benner 12:45
Yeah, I agree. All right. I'm also going to wonder for the rest of the day, what the people at Medtronic there who are handling their search engine optimization understands about MDI that I don't understand because it seems very important to them, that when you google NDI, you end up on their website. Interesting. I'm gonna think about that for a while, Jenny, thank you very much for doing this. I appreciate it.

Well, I'd like to thank everyone for listening today. And of course, Thanks, Jenny Smith for being on the show. You can hire Jenny at integrated diabetes.com. That's pretty much it to short episode. And I just wanted to pop back in and say thank you. And Dima putting the ads on this one today. Just talked about some stuff for the podcast or earlier. So please, if you you want to check out other series in the podcast. Go back to the beginning. Go over a number of them for you. Hmm, that's it short and sweet, huh. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#829 Chinese Hamster Ovaries

In episode #829, "Chinese Hamster Ovaries", we spoke with Cassandra who bravely shared her story of living with type 1 diabetes and a host of other autoimmune issues. Her experience was truly inspiring, and provided insight into the challenges many individuals with diabetes face. Cassandra's willingness to share her journey gave hope to those living with autoimmune disorders, as she showed us how to stay positive in spite of the difficulty of managing diabetes and other conditions. Her courage and strength were both evident in her story, and it serves as a reminder that even when faced with the toughest of life's challenges - like diabetes - it is possible to find joy and live a full life.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 829 of the Juicebox Podcast.

This episode came very, very close to being called U turn because of the amazing turnaround that Cassandra made. But then something happened at the end, and now it's called Chinese hamster ovaries. So, what do you think of that? While you're trying to figure out why that could be? Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. Are you the caregiver of someone with type one or a type one yourself? Please head to T one D exchange.org. Forward slash choose box and fill out the survey. When you do. You'll help move diabetes research forward, you'll support the Juicebox Podcast and you may just help yourself. You'll find out more about why that can be AT T one D exchange.org. Forward slash juicebox. So much music left again. Huh boo doo doo doo doo doo doo doo doo doo. You should check out the private Facebook group Juicebox Podcast type one diabetes. That's a good thing to put here. And yeah, there's a podcast website to juicebox podcast.com. This episode of The Juicebox Podcast is sponsored by touched by type one, what a great organization touched by Type One is they do so many things for people with type one diabetes. And they've they've asked me to tell you that they would just like you to come check it out. It's it touched by type one.org. You can also find them on Facebook or Instagram but touched by type one.org lays out the whole thing. Take two minutes today and go see what they're up to. The podcast is also sponsored today by ag one from athletic greens. I begin every day with a scoop of ag one from athletic greens that you could as well actually they're offering a free year supply of vitamin D and five free travel packs for new customers too. That's all at my link athletic greens.com forward slash juice box.

Cassandra 2:23
My name is Cassandra and 35 years old. I've been a diabetic for 24 years now. And I also suffer from some other autoimmune diseases which I guess we will come later to. And I've not always taken the best care of my diabetes and I also suffer from gastroparesis and retinopathy

Scott Benner 2:49
gastroparesis and right up. Okay. All right. So you were 11 years old when you're diagnosed?

Cassandra 2:56
Yep, pretty much pretty much

Scott Benner 2:59
11 years old. 24 years ago. Oh, the math on this is pretty easy, isn't it? 1998.

Cassandra 3:06
Wow, I'm impressed.

Scott Benner 3:10
I really just had to subtract two from 2000. So wasn't, it wasn't that tough? I was like, Oh, I can handle this one. Our you know, that was long enough ago, right? Like things weren't terrific. As far as management goes back then. Were you regular and mph?

Cassandra 3:29
Yeah. In the beginning. Yeah. And then they kind of switch me. I was in honeymoon for the first four months. And then they switch me to like a mixed insulin, which was like premix mph and regular. I don't know the name, country member. But you had to pretty much eat on a schedule and eat the same amount of carbs every day.

Scott Benner 3:59
That sounds fun. Yeah.

Cassandra 4:01
And my mother was on it. And we had to take like the scale everywhere. And then after a year, the endo was like, you could go on a pump. And my mother was like, fully against it and was like, no, no, no. And I was like, Yes, I want to do that. Because I knew she had no clue about technology. And that could gain like little bit of independence back.

Scott Benner 4:31
Oh, are you saw the pump as a way to distance her from the management?

Cassandra 4:36
Yeah. Yeah. Because she was controlling me. I couldn't have any kind of sugar. And she really micromanage me and I was like, I want to get away from her.

Scott Benner 4:48
Cassandra did that lead to any kind of rebellion or eating disorders?

Cassandra 4:54
Not eating disorders, but rebellion and it lasted for Like a very long time, pretty much into my mid 20s. Okay, I just sneaked food, ignored diabetes, and just pretended it didn't exist. Because I was so traumatized by her behavior of micromanaging me that just pretended diabetes doesn't exist.

Scott Benner 5:26
As an adult, have you had an opportunity to speak to her about it?

Cassandra 5:29
Yeah. And she still thinks it, if I would have adhered to her rules and like the carb counting and just to exercise a lot, I wouldn't need to inject insulin to this day. She does. She just fully doesn't get the concept of running.

Scott Benner 5:52
Okay. Hey, is this a cultural thing? No, no, it's not. It's not not totally belief that she grew up around or something like that. Okay.

Cassandra 6:00
No, it's just she thinks she's a superhero.

Scott Benner 6:06
I'm trying to pick through who you are, Cassandra? Because your name and your accent don't go together.

Cassandra 6:12
Yeah, I'm so I'm from Switzerland.

Scott Benner 6:15
No kidding. Okay. Yeah.

Cassandra 6:19
Yeah, but my parents saw a TV show with a girl named Cassandra. And they named me after her.

Scott Benner 6:27
I say, I say, hey, that part of the world type one, pretty prevalent. No, no, you didn't know a lot of

Cassandra 6:39
no one in real life. I mean, I made friends now since I'm looping. And I'm pretty active in the community here locally. But before that, I knew nobody. I say,

Scott Benner 6:53
oh, that's that makes it even harder. So So you were able to create this space between your mother with the technology, but then instead of taking care of it and doing it you would you use that opportunity to ignore it? I'm correct about Yeah. Okay. Yeah. Did she ever check back in to see how things were going?

Cassandra 7:16
Yeah, I mean, she asked how my blood sugar is. And I was always like, Yeah, great. It's like 100 or 110. And my agencies, agencies came back lag in the 10s and twelves. And of course, then you something is wrong, but they also somehow gave up.

Scott Benner 7:39
No one called you out. No one said, No, your agencies don't match the blood sugars you're telling us about?

Cassandra 7:45
Yeah, well, they checked my glucose meter. And they knew it's not matching up, and there are high numbers in it. And it's not much written in the logbook. But that was about the

Scott Benner 8:01
extent of it. So you weren't a great liar. Just the cops that were chasing you weren't good cops either. Yeah. I see. That's like a Benny Hill sketch. So there's a reference Cassandra, no one's gonna get but we'll just leave it there. Anyway. So you say this went on until your mid 20s? So maybe 15 years?

Cassandra 8:23
Yeah, probably well,

Scott Benner 8:26
and a once he's 1112 that whole time?

Cassandra 8:30
Yeah. And then, I mean, maybe early 20s to gastroparesis started that fast, okay. I had like, just pain in my gut, and they, they try to research it and check it and they just came back. Well, there's nothing wrong with you. So it must be gastroparesis. And they just put me on meds and that was about it.

Scott Benner 9:06
Did you notice Did you notice slow digestion when you were using insulin or were you not even using insulin well enough to know

Cassandra 9:14
No, I mean, I use my Lantis maybe once a day and if I did that it was I cared a lot so I was really ignoring it.

Scott Benner 9:27
I gotcha. Yeah.

Cassandra 9:30
It's I never covered meals. Maybe if I I recognized them super high corrected with no luck. But not like on a regular schedule.

Scott Benner 9:45
Recognize that you are high like got cloudy and foggy and tired and thought I'm

Cassandra 9:50
tired and thirsty and yeah,

Scott Benner 9:53
heading towards DKA you realize you feel it, but you wouldn't pick up a meter and look otherwise.

Cassandra 10:00
Sometimes didn't pick up on me for like three months.

Scott Benner 10:04
Okay. Cassandra, can I ask you? I'm just gonna ask if I can ask you a personal question. But this whole thing is a personal question. So I guess I'm okay. Were you punishing your mom quietly?

Cassandra 10:16
I'm not sure. But yeah, probably.

Scott Benner 10:20
So it really had an effect on you. What happened to you when you were? Yeah. Did she? Did she control your food? More than I'm imagining?

Cassandra 10:31
Well, she said, Yeah, I mean, it was, I was supposed to eat six meals a day. And it was like for lunch. Here you have pasta. And it is no matter if you're hungry, no matter if you had enough. Just eat this. Now, and also, I had to have some kind of protein or fat like yogurt before I go to bed. And it wasn't the question if I wanted or if I'm up to, I just had to.

Scott Benner 11:07
And like you were testing to see if you needed these things. She was just following, like, some strict instructions, the instructions. So the original instructions. So 24 year old original diabetes instructions, your mom never deviated from she just thought this is that everyday rest of your life? Yeah, yeah. Well, you have your reaction is I'm going to make a weird comparison. But when we were teenagers, if we wanted to try to like find girls that were friendly, does that make sense? Cassandra? Yeah, we would go to the Catholic school girls, because they were more rebellious. So they were they were looking to run with the public school girls were like, I'm allowed to have sex if I want to. And I don't want to, but the you know, but the people who are being told no, don't do a thing. They were the people who pushed back against it the most.

Cassandra 12:00
Yeah, of course, I guess it's normal reaction. Yes, human.

Scott Benner 12:03
Yeah. It's interesting. But why do people? Why do people not see that when it's their turn to make a decision for another person? You know, they mean, like, your mom was a grown person, somebody must have done something like that to her as she grew up. How is that like, you know, for me, I thought, well, let me figure out how this insulin works. Because the last thing I want to do is micromanage food in a way that might give my young child weird feelings about food, or can make her feel rebellious like this, make her want to run in the other direction. It just seemed like common sense to me not to do that, but but this is really something else. So. Okay, so you're in your early 20s. Can you explain the gut pain that you talked about? What was it like?

Cassandra 12:50
I can't really remember, but it was really intense. I was admitted to the hospital several times because I was bloated and was just cramps. intense pain.

Scott Benner 13:04
Full of food is what you are, right? Yeah, yeah. Yeah. So what did they do for you once they say we think this is gastroparesis,

Cassandra 13:14
that just give you like, some medications for the nausea. And so that, that the testing is sped up. But those medications don't work very long. And there are still to this day, no medication, like clear to the FDA or something for gastroparesis. And that's the struggle for all the people that gastroparesis, that net work for a set amount of time, which is usually like six months, a year, if you're lucky. And then you have to change over again

Scott Benner 14:01
to something else. And these medications need to be taken time you eat or once a day, or how does that work?

Cassandra 14:08
Yeah, most of them with like with a meal.

Scott Benner 14:13
Isn't it ironic? Cassandra, the thing you were trying to avoid, which was doing something on a schedule, became the thing you had to do. Yeah, that's crazy. I'm sorry.

Cassandra 14:24
Yeah. And but the kind of funny thing is, all the pain went like way over the years. So I guess my nerves are so damaged. I don't have pain anymore. But I still have the gastroparesis and basically, only know it because I'm very tight control now. And I see that my Dexcom goes up like not instantly after a meal, but later.

Scott Benner 14:58
Yeah. So you See the delayed emptying the delayed digestion? And then it hits. So how far after a meal do you have to Bolus? Do you wait to use kiss if you ask the Pre-Bolus? Because you have a four eight that you say? Yeah. Are you eating a low carb lifestyle now?

Cassandra 15:17
No, not at all. What I do is I do intermittent fasting. Because about it's not really like a diet choice. It comes just more natural because I only want to eat once a day.

Scott Benner 15:33
Okay, what's your what's your window?

Cassandra 15:36
Like, from 12? to, like, from noon to 8pm?

Scott Benner 15:42
Okay, and but you eat one meal in that time?

Cassandra 15:45
Yeah, most of time. It's dinner. And I mean, sometimes a little snack like nuts or something in the afternoon.

Scott Benner 15:53
You have any trouble drinking things or that liquids are okay, no,

Cassandra 15:56
no liquids are totally okay.

Scott Benner 16:00
What? I'm sorry.

Cassandra 16:02
And also, I had, like a small surgery beginning of the year for the gastroparesis. It's a super new thing they do they kind of enlarge the palace, so that the food goes through faster.

Scott Benner 16:24
The major pipe bigger.

Cassandra 16:26
Yeah, basically,

Scott Benner 16:27
did it help

Cassandra 16:29
it have a tongue? No kidding. It was really amazing to kind of see the change. Also on the Dexcom graphs, that food is getting sore. Faster. And also, if I have like low, I can drink a coke. And it's working within five to 10 minutes. That's the one I mean, yeah. wasn't the case beforehand.

Scott Benner 16:59
Right. Right. People don't think about that. Like when your body's not absorbing and digesting. It's also hard to stop a low blood sugar. It is yeah. How did you not how when when did you decide to pay attention to your insulin?

Cassandra 17:18
It's, it was actually really funny, maybe like, three years ago? Or no, let's start started with the earlier in my mid 20s. I decided I wanted to take better care of me. Um, and I tried really hard and my agency Medicaid, who down to seven and my endo was like, Yeah, that's great. You're doing such a good job. And it probably won't get better to do to all the things you're going through. And she was like, yeah, that's about how good you can get.

Scott Benner 17:59
Like, a seven they thought was his best was the best you could do. Yeah. What did you What did you think when they said that?

Cassandra 18:07
I was like, No, no way.

Scott Benner 18:10
Okay, so you were motivated at that point? Yeah. Okay.

Cassandra 18:14
But also kind of the funny thing was, they always told me like you're diabetic for such a long time, you know how to do things. But actually, because I was in denial, or ignored it for so long. I didn't have all the tools.

Scott Benner 18:34
Right. You are pretty much newly diagnosed as far as your understanding what Yeah. Are you were you able to? Did you recognize that?

Cassandra 18:44
No, not for a very, very long time. And then my endo came up with the superduper, Medtronic 640 Qi. And she was like, you could try that one. And I was like, a tube pump? Maybe not. But I was so desperate at that point that I was like, yeah, maybe I'll give it a try. And then I started researching. And I found out that and then you about yourself looping. But I knew we'd only works like with the old Medtronic pumps. I remember then I found the website again and found out that only like three months ago, they found out how to make it work with Omnipod. Right. And then I wrote my end on email. And thanks for my Tronic I'm not going to take that I go do it yourself route.

Scott Benner 19:52
So you went way but you went from not taking care of yourself at all to using a do it yourself algorithm that you got off the internet

Cassandra 20:00
Yeah. Then she will. I mean, she knew I'm able to build it myself because of my professional background in it. And she also had some real kind of confidence in me. And she just let me do it. And my Avon fee went down within three months from the seven, seven a half range to 5.2. And it's ever been then there since maybe three years.

Scott Benner 20:35
And that's a few years ago, three years. Yeah, three years. How did you learn about the loop? just Googling and looking around?

Cassandra 20:43
Yeah. And then that's pretty much also the time where I spent the podcast. And then I remember things that were taught to me like Pre-Bolus thing. And I started paying paying attention to that again. And then yeah, it was pretty much a self runner.

Scott Benner 21:03
Wow. Like it's you. But you figured it all out in in short time, does it? Are you trying to figure out how you're able to handle this? So are you do you look backwards now? And are you just happy? You changed? Are you angry that you didn't do it sooner? Like how does that like once the dust settles? How do you feel in your head?

Cassandra 21:25
It's a bit like OMG Why did I do that sooner? Yeah, it will be so much easier now. But I'm also just like very happy to see how I feel day by day that I feel so much better.

Scott Benner 21:48
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Cassandra 24:00
that I feel so much better. And it's more like looking back and how could I survive with like blood sugars in the 210 300 All the time

Scott Benner 24:15
you're making me smile I don't usually smile this much when I'm talking to somebody you just what you just said really just put a big smile on my face. I'm glad you're not bitter about it. I'm glad you're excited. And it's fascinating that you just switch gears and and found a Do you have any do you have any feeling about what it was that made you care all the sudden?

Cassandra 24:40
I guess the loop was kind of the key to it because I always had the impression that I don't get the right tools to do it properly and with the loop. I kind of felt like I'm supported enough to make good decisions. And and to take care of this. And then ever had that feeling before?

Scott Benner 25:05
Because you You described earlier that you were working hard at it at one point, but having no success.

Cassandra 25:10
Yeah. Right, because I haven't had the right tools.

Scott Benner 25:14
That is I think that's one of the most important things that a practitioner can hear is that you cannot send somebody to war, you know, with a pool noodle. Right, right. And with or without the weapons they need. And then when they come back, look him in the face and, and they fail. They know they failed already. And then you tell them they failed. Or you give them some kind of BS, like pep talk. You don't

Cassandra 25:43
put a pat on the back. Yeah, you're doing you say, but you would, you could

Scott Benner 25:47
Yeah, it's like you're in a basketball game, and you're losing by 70 points. And your coach calls a timeout pulls you over and goes, guys, we're in this. Yeah, no, we're not. Yeah, I know. We're not in this. I'm out there. I'm killing myself. We're getting run over. There's nothing here you're, you're happy words are not going to make this better.

Cassandra 26:08
It's also really funny. It's not only the end of that, or the end all brains that work like that. I just recently made this experience also with another immune autoimmune thing going on. And I, all of a sudden, like joint pain in my fingers started last summer. I mean, it was really noticeable that my right hand was swollen, and my left was and it was hurting luck. And I went to the rheumatologist. And then he basically he took plot and checked everything. And he was like, No, this is another array. It's probably just diabetes.

Scott Benner 26:59
diabetes just made your hand swallow.

Cassandra 27:01
Yeah. And then I was like, Well, no, I don't think so. And then he said, it's I never heard that term before. Diabetic Kairo arthropathy and wait, what? Yeah, I knew he said it's that

Scott Benner 27:19
oh atrophy

Cassandra 27:22
I wrote arthropathy

Scott Benner 27:28
I might have any are homozygous diabetic or to articulate the

Cassandra 27:36
like you can extend your fingers anymore.

Scott Benner 27:39
Oh, the trigger finger. No, no, no, not trigger for everyone. No. is a nerve disorder, which is complications of diabetes mellitus. It affects the thighs, hips, buttocks legs, causing pain and muscle wasting. No, no. I'm not finding it. Spell the second word for me.

Cassandra 27:56
It's like It's like AR th Oh, I gotta pee.

Scott Benner 28:08
Wee that went away on me. I got patients with diabetes decreased sensation in the joints as a result of diabetic peripheral neuropathy can cause chronic and progressive arthropathy. It occurs as a result of increased laxity of ligaments increased range of motion of joints instability and repetitive micro traumas with poor healing that sound right? Yeah, that's what he thought. But what was it really?

Cassandra 28:38
All right, let's say negative.

Scott Benner 28:41
So negative for antibodies for RA. Yeah, but symptoms are there.

Cassandra 28:45
But I mean, it took me like seven months and several visits to several rheumatologists. And I also talk to my endo about the diagnosis from the first one. And she said she's an endo now for like, 20 years. And she has seen two patients who have this with what

Scott Benner 29:06
the other person said. Yeah. Well, what are some of the symptoms like tell people exactly how you came to seek out the doctor?

Cassandra 29:18
Yeah, just because my joints were really swollen. And it hurt a lot in the morning and I was like, stiff in the morning and it needed time. And actually, the the funny thing is with moving the fingers, it gets better.

Scott Benner 29:35
Okay, kind of break. You can break it free over time.

Cassandra 29:39
Yeah. It's like it's iced and then if you move it, it gets better.

Scott Benner 29:44
Okay. Painful every day. Yeah. Do you take anything for it?

Cassandra 29:50
Yeah, um, then, I mean, the rheumatologist will who said yeah, it's maybe Ra, right? On the corner, he said let's wait some months until we start treatment. And then I I went back to him like four months later and he was like, Ooh, your charts are fifth voelen we need to do something now. And then he put me on immuno suppressants. And that didn't work went well at first, because it was like, three months after my gastroparesis, surgery. And then the gastroparesis started to kick in again. It just basically paralyzed my gut.

Scott Benner 30:41
So you're chasing down this Ra was pretty recently to in your life. Yeah. Okay. How long do you think it was going on until you till you went to a doctor?

Cassandra 30:53
Oh, like only maybe a week. Oh, you because I had the feeling.

Scott Benner 31:00
So it came on and you went right away.

Cassandra 31:04
When this all started, I had a feeling. Yeah.

Scott Benner 31:09
Wow. So what is that? Hold on a second. Let's let that go for a second. Because I'm gonna just, I'm gonna pile all the sadness right here in the middle, and then we'll talk some more. retinopathy.

Cassandra 31:23
Oh, my God, that's even a sad part.

Scott Benner 31:29
That's why I kept it for the end. Go ahead.

Cassandra 31:33
retinopathy started, like, probably in my mid 20s. I had just, at first I just had some, like, blurry visions, like flies that I saw. And I mean, I was I went to the doctor, and he said, said right away, it's retinopathy. And they did several laser surgeries. And then, at one point, it got that bad that we were in a restaurant and paid and left. And in that very moment where we left the restaurant, I couldn't see anything, my vision was gone. And then I went more or less directly to the hospital. And they did surgery. And then the first I they could rescue, and then I got pneumonia from the anesthesia. And I had to wait, like, almost a month for the second surgery. And yeah, that's the reason I don't have any vision on my left eye

Scott Benner 32:56
anymore. completely blind in your left eye.

Cassandra 32:59
Yeah, I mean, I see some light. I see. Like, if it's like, light or dark. But other than that, no, that's pretty much it. I'm sorry. Well, well, you could use to it.

Scott Benner 33:15
Do you really? Yeah. Can I sneak up on you from the left side, though? Sure. Okay. You got you couldn't, that you can't overcome, right? No, no. Does it have a big impact on your life?

Cassandra 33:31
It does, but my partner is really as as really supporting me. Very, I needed. So if you think hard about it, it has a big impact. But my support system is so great that it happens. If that makes sense. Oh, that's

Scott Benner 33:55
wonderful. How long have you two been together?

Cassandra 33:58
Um, in January, it will be a decade.

Scott Benner 34:02
Wow. Nobody's not getting married? No. How come? Is it? You are? Or I'm sorry? Him, right?

Cassandra 34:11
Yeah, the both of us. Most of you don't want to be married. Yeah. We just don't see a reason and we don't want kids. I wanted kids for the longest time and then I thought hard enough about it and decided not one kid.

Scott Benner 34:28
So come over here. I'll show you how much money I spent to send my kid to college. Y'all know he did the right thing. I mean, he's lovely and everything, but it's a lot of money. Yeah.

Cassandra 34:41
Well, I'm gonna have a doc and I can barely take care of him. So maybe that's the right decision then.

Scott Benner 34:49
Can I ask you Cassandra and not that I think that wanting to get married makes you like mature. I don't think people should get married if they don't want to be married. But are you Is there something about your life's path that like that late leads you to be in a situation where you're like, I can barely take care of a dog?

Cassandra 35:09
No, no, no, the the marriage thing is more like our Texas would double O. And you don't have an advantage. So why should we do it?

Scott Benner 35:24
This is this is the keep the the man's hands off your cash. I understand. Okay, that makes that makes sense. Do you get treatment on the other eye?

Cassandra 35:38
Well, I just my eye pressure is high. So I need daily drops for that. But other than that it's stable.

Scott Benner 35:48
Okay, you haven't been getting like laser or needles or anything and the other eye.

Cassandra 35:53
I had that. I had the needles. It was frightening three. Well, it didn't hurt. But it's really frightening to have a nine year needle in your eye.

Scott Benner 36:03
Yeah, I know. I've had people describe it on here before and how you have to stay perfectly still. And yeah, it's coming right at you. You can't close. You can't move. You can't blink. You can't. It's just It's crazy. And but but it doesn't hurt. Is that correct? No, it doesn't hurt. Who do you think the first person is that figured that out? Who had the who had the balls to be like, I don't think this Jesus?

Cassandra 36:31
And I guess at first it was medication against breast cancer. Really? Yeah, they only made recently like, really separate medication for the retinopathy. But at first it was a medication against breast cancer. And they also gave it like to very old people and some people had to go in every week, or every second week. And one injection was like 2000 bucks. And it wasn't even covered by insurance.

Scott Benner 37:08
That's something else. Well, I guess to see to save your vision. Probably there's no cost. It's too high. Yeah, if you can come up with it.

Cassandra 37:16
I guess. That's exactly

Scott Benner 37:18
alright. So autoimmune stuff. We are we have we run through all the autoimmune that you have, or is there anything else? Oh, no, of

Cassandra 37:25
course not. Go ahead. Um, I booked for the longest time I have no dermatitis. But turns out no, it's or to carrier. That sucks. Yeah, it's just you get hives all over. And they actually only diagnosed it very recently, like three months ago.

Scott Benner 37:54
How long has that been? Sorry, how long has that been happening to you?

Cassandra 38:00
Yeah, probably like five years or something. But they will always thought it's no dermatitis and gave me a Styria steroid, just topical. And it wouldn't make things better until they found out I'm allergic to potatoes in one day and to the Dexcom adhesive the other day.

Scott Benner 38:26
Is the How often does the the hives flare up?

Cassandra 38:31
of I guess it's really it really depends. But I would say maybe like once a week and then sometimes I have stretches of time. That it's like constant.

Scott Benner 38:47
Is it painful?

Cassandra 38:50
No, it's just itching like crazy.

Scott Benner 38:53
Does. Do you have a thyroid issue?

Cassandra 38:57
Yeah, of course. Of course.

Scott Benner 38:59
Just like I got it all baby. I'm collecting

Cassandra 39:02
all you could probably get

Scott Benner 39:06
you're gonna win McDonald's Monopoly for autoimmune diseases. So tell me something. Are you hypo or are you Yeah, I'm hypo but Natasha. No. Do you know what your TSH is?

Cassandra 39:21
Um, I mean, the high DECA highest it got was five. But at the moment, I'm like around 1.2.

Scott Benner 39:31
Do you supplement with any T three?

Cassandra 39:35
I have to Cynthia.

Scott Benner 39:38
No. T That's the T 40. Do t Oh,

Cassandra 39:41
I'm sorry. No, they wouldn't give me the T three. Because that was also a thing I had to push so hard that they even put me on theorising

Scott Benner 39:51
for a five TSH they wouldn't put you on.

Cassandra 39:54
No. Oh, not under 10

Scott Benner 39:57
monsters. Hold on a second. That So are you do you have any other weird? Are you tired? You have low energy? I

Cassandra 40:04
was so tired. I could sleep 24/7

Scott Benner 40:08
How about now?

Cassandra 40:10
It's so much better,

Scott Benner 40:11
so much better. Does it still exist?

Cassandra 40:15
Like that? I'm getting tired. Yeah. Yeah, I mean, there are times when it happens, but I mean, it's so much better now. I could barely function

Scott Benner 40:30
with the flag. Sure. No, I believe that. It's just my son manages his Hashimotos with T four and T three and RT and manages with T four with just with T four Arden even if when Arden's TSH is very good under two. She's still exhausted. It's the T three that gives her the energy. Okay. And contesting my son's only. I mean, obvious symptom, which led us to figure out that eventually he had Hashimotos was hives.

Cassandra 41:04
I was Yeah, yeah, I read that too. And was wondering if it's somehow connected.

Scott Benner 41:12
Yeah, I don't know why they wouldn't just try like so. I mean, you have to find a real outside of the box thinker for your thyroid. But like Arden takes, I think Arden takes one few like instead of, I think the move down her tears and a little bit and then added to T three. So her TSH is still right where they want it to be. But a lot of her other symptoms are gone. Yeah, I just think well, what would it hurt to help to do that for you to see if it alleviated the hives?

Cassandra 41:42
I don't know. I actually was really motivated after your episode with Dr. Benito. To seek like a second opinion on the TSH thing. Yeah. And then I went to another endocrinologist, because there aren't that many around here. So I went to that one. And he was like, well, you're on such a low dose of terrorists. And you're not even High Pro. That that won't explain that you feel better.

Scott Benner 42:14
Yeah, that's just people looking at numbers and talking. What? What's your dose?

Cassandra 42:20
Like? Back then my dose was 25. And then now I'm 38.

Scott Benner 42:25
Okay. How much do you weigh?

Cassandra 42:29
Oh, um, weight, calculated 125.

Scott Benner 42:34
It is a small, it's a lower dose. But still, I mean, a TSH of five. i If anyone's listening, if your TSH is five, do not let somebody tell you you're in range. If you have symptoms of hypothyroidism, or Hashimotos, find a doctor that will give you medication, those symptoms will be helped by that. There's too many too many doctors with thyroid that treat the end range. I'm making air quotes. As as the letter of the law, it's almost like diabetes, where they tell you like 15 carbs. 15 minutes you're like, but my blood sugar is always 300. Right? Yeah. 15 carbs, 15 minutes. Those are the rules like like, sometimes you just have to treat the symptoms and not what's written down somewhere. So yeah, I don't know. It's tough because you have a limited amount of doctors to go to. Yeah, you should find a friend who's on T three. And I'm saying and grab a couple of them. Because the funny thing about T three is it works so quickly. That you will know very quickly if it's having an impact. Oh really? Yeah. Which is the which is like if you in your situation with a well managed TSH, you're already getting tea for. If someone added like a Saito, mille or even like an armorer, thyroid as a supplement to that,

Cassandra 43:55
you would know even half armor here.

Scott Benner 43:57
Yeah, you would know inside of four or five, six days, like you might feel more energy or you might see I just It sucks to think that somebody wouldn't give you a pill. Site ML is an example, for a couple of weeks to see if your hives go away. Like it's not gonna, it's not gonna hurt you. They just they'll just take down they'll probably what they would probably do is remove one of your tears and pills a week, you'd take it six days a week, and then you would take the T three at the right level seven days a week and see if it had an impact. And if it did, then great. And if it didn't think you stopped taking it. It's not like it's gonna make your head fall off. You know what I mean? Plus,

Cassandra 44:36
yeah, but they act like it was I know.

Scott Benner 44:39
Plus, Cassandra, you're kind of tough. You know what I mean?

Cassandra 44:43
I'm pushing them Yeah, yeah.

Scott Benner 44:45
Well, no, I don't mean to I mean, like physically, like you've got like, a wheelbarrow full of problems. And you're just like on here light hearted and talking about it. And I mean, you could handle a little bit of like, trial and error for your For some other stuff, you know?

Cassandra 45:02
Yeah. But I also think like with this myriad of illnesses, doctors are really cautious to try something.

Scott Benner 45:15
Will you have hives, so they should try something, by the way,

Cassandra 45:19
actually, um, because the antihistamines didn't work as well as they expect, and also because my kidney is can have damage. I mean, it's not really bad, but they are cautious. Um, they said they put me on solar, which is a biological

Scott Benner 45:45
Sondre wish you and everybody listening could see my other computer screen here where I have just in the last couple of minutes pulled up Xolair to talk to you about to see if you if anybody brought it up to you. I felt very, I felt very accomplished when you said that.

Cassandra 46:00
I mean, Scott, the funny thing is, I had to grind it up.

Scott Benner 46:03
Oh, yeah. And nobody's gonna help you. It's hives is one of those things, doctors, so don't understand that. It's just you almost get the like, Oh, that's a shame. Go home. You know? Yeah, that really seems like it sucks. I don't know what to do. Uh, see you later. I so you have you've been taking this all air for how long?

Cassandra 46:23
Yeah, I actually got my second shot. So you get one one shot per month, right? I got my second shop like two weeks ago. And it actually has been great with the house. They're gone. Wow. But big. But it messes so much with my sugars. That won't pick the next.

Scott Benner 46:50
So it makes us it messes with your blood sugar's for how long? Always we're just during No.

Cassandra 46:56
It's really funny. I actually research this that kind of on day seven or eight, after the interaction, the solar is at its peak. And there, I get like, I need to dose like 200% I need an override for 200%. Kind of in range. How long? It depends. It goes away and then comes a little back and it's not linear. It's not like with steroids where you have like a clear curve, hours, days, days.

Scott Benner 47:39
Are you really thinking about not doing it anymore?

Cassandra 47:44
My plan is kind of get off of it for one month. See if the hives come back. See if the blood sugar thing goes away and decide then with the data I have.

Scott Benner 47:59
Yeah, I mean, I know you don't want your blood sugar to be high. But it's all there is not forever, right.

Cassandra 48:08
Could be forever. It's not clearly stated.

Scott Benner 48:14
I hear some people take it for like six months or so. And then they try to get you off of Oh, okay. Because I mean, listen, I'm not you and you know what you can tolerate. But if you could, if you could get those hives pushed down? That'd be a big deal, I would think.

Cassandra 48:29
Yeah, yeah. I mean, look, the problem is more, like, I have so many inferences on on my beachy, that sometimes there's such a huge mess that I'm getting anxious, because I can really see what from what, and then just adding insulin on top of it on top of it on top of it. And finally, you're on such a high dose of insulin and then you crash. And you don't know from what right, you know what I mean?

Scott Benner 49:07
No, I know it's scary. It is you get a little paralysis, right? Like there's so much going on, you just don't know what to do.

Cassandra 49:16
It's just very difficult to manage. If I know I get a steroid injection, I'm high for three days and then it's gone. I'm completely fine with that. I can manage that. But I also for example, suffer from from UTIs and I don't have like pain from the UTIs but my blood sugar gets really wonky and I need a ton of insulin.

Scott Benner 49:40
Okay, how often they happen like weekly. That's interesting even though you have your blood sugar's are so low.

Cassandra 49:49
And I got really good at the debt, detecting them and I'm like on a on an antibiotic. Technically now, but I mean, it's just so much going on that, how should I manage this? And then if one thing falls away, it's such a huge amount of insulin that probably I'm going into the 40s during night, and I'm just not really up for that. No, I

Scott Benner 50:23
understand. I can't listen, I can't blame you. And it's up to you. Right? What you're what you're willing to deal with. Like, it sounds to me like, the more stable blood sugars are more meaningful to you, and more comforting than the removal of the hives. Is that right? Or?

Cassandra 50:42
Yeah, kind of, because I don't know how I will decide in the end. But that just want to see what it does if I just leave out the month. Yeah. And I mean, if the Habs come back, I probably will end up doing the solar again.

Scott Benner 51:02
Yeah, well, it's they're terrible. Just having

Cassandra 51:04
kind of the clarity to see where does it come from is really bad that influences it, just to have clarity?

Scott Benner 51:17
Well, you would think that with all this going on a doctor be willing to try, like, re managing your thyroid to see if it impacted the hives, because I'm telling you, my son got them terribly. And okay. And he, we got him on to tiersen. And then they added the T three goddess TSH, way down, he's fine now, and the hives have never come back. And it took a lot of research for us to figure that out that there is a connection there because it's not common for someone to go live. But it does occur. I'm sorry, I have to clear my throat. No problem. I had to dig through NIH articles to find a connection between hives and an Hashimotos, which we did not know we had at the time at the time, they were treating him just like they treated you like here's a steroid, all that crap, right? And none of that obviously had any effect on him. And we just kept saying, like, Well, what about this? What about this, and finally, I got somebody to test his TSH. And we caught a real high number. And he was I think, in some sort of, like his, I think his thyroid was like fluxing around because he we caught like this number, I think in the 60s or the 70s. And then all of a sudden it dropped again, because they were now taking his blood pretty consistently. And Dr. Bonilla was like, it doesn't matter. Like we're putting them on the medication, put them on, and it took six weeks for it to get him straight. But it was so I've said it on the podcast before. But if he heated up, got excited, somebody scared him, like his adrenaline popped up. If he tried to lift weights or exercise no matter what he did, he'd break out from his neck to his waist. Oh my God, that's terrible. And then the only way he can make it go away. And luckily it was wintertime hit a walk out in the freezing cold, lower his body temperature. And when he lowered it away, went away. Oh my God. So he lived for months in his bedroom in November in on the east coast of the United States with his windows open so that he wouldn't break out until we could figure out what was happening. Oh, that's that's so terrible. Yeah, we basically took him he's a college age kid, we basically put them in a refrigerator, so that he wouldn't be wouldn't Encap him still. And he's a baseball player and an athlete and he got heavy, like, you know, the the plastic in the steroids. He got out he got that medication went right back into the gym, like whipped himself back into shape again. And it was and he was, it was a tough time for him. And he only had that happening. And I'm listening to all the things you have going on. And then it leads me very naturally to my next question. Like do you see a therapist? Yeah. Like, are they with you constantly? Like, I, I thought I'd be like, Listen, why don't you live with us? But But Is that helpful at all?

Cassandra 54:16
Sometimes it is. And sometimes I think it would be really helpful to really have a therapist who suffers from diabetes or just another chronic illness. Because, I mean, she is like, really compassionate. But that's sometimes think like, they don't really get it. Yeah. They don't know what it feels like to get Dexcom alerts every hour to a night and your sleep deprivation provided and need to go to work the next day.

Scott Benner 54:54
And it would be better it would probably be more meaningful for you meaningful for you if it could come from somebody who acts So you knew what you were talking about? Yeah. Have we missed any other issues? Because I have some follow up questions for you. But we're getting close to an hour. So do you have anything going on that I haven't brought up yet?

Cassandra 55:14
No, I think that's, we got enough.

Scott Benner 55:18
So then I have a couple of questions. And but before I asked mine, have we not talked about anything that you want to talk about? No, thanks. Good, good. Good. Okay. So I have more questions. I'd like you to talk about, you're an interesting person, obviously, you know, the, a huge, you know, a litany of issues that you're dealing with that are autoimmune. And then on top of that, you have long term, side effects of poor care. And so I guess I want to understand first, about perseverance, and what keeps you going.

Cassandra 55:59
Um, I just think life is not over yet. And I just take it day by day, and I kind of see the comparison of how I felt like five years ago, and now a few now and it's so much better. And I just take one thing at a time. I mean, if I would think every day about every single issue, I will probably go crazy. But just take one step at a time.

Scott Benner 56:34
And so is it that is it the whatever is most present, or do you? Or do you kind of have a list? Do you work from what you know, you have to do? Do you know what I mean? Like do you have a plan in place? Or do you just tackle things as they come at you?

Cassandra 56:52
Yeah, it's pretty much like situational. What's kind of bugs me the most gets attention.

Scott Benner 57:05
Whatever's whatever flies flying in your face? That's the one you swat at. Yeah, gotcha. Any depression?

Cassandra 57:16
Um, I had that. But it was when my blood sugar was way burst. And I think it was also caused by the high sugars.

Scott Benner 57:29
Okay, so you but so

Cassandra 57:31
I'm also getting I'm becoming a different person if my sugars are high. I really noticed this now,

Scott Benner 57:41
right? Angry short tempered, whatever. Yeah.

Cassandra 57:45
And I'm also getting a different person. If I'm going low. Then my boyfriend is like here food. Don't talk to me.

Scott Benner 57:56
You get you get nasty when you're low.

Cassandra 57:59
Oh, yeah. Like, really? That every one else is like the enemy. And then the group one. And everyone is mean. And then you just need to shuffle food.

Scott Benner 58:15
Wow, you get defensive when you're low. Yeah. It's interesting. Does it happen out of nowhere or does it come on slowly?

Cassandra 58:22
No, it's really like, super quick onset. And then once I get like, the coke in me or whatever I drink, it gets better.

Scott Benner 58:36
It's interesting.

Cassandra 58:37
Then I put on a sweet smile and say I'm sorry, I have a flow. And then things are good again,

Scott Benner 58:44
right? Because you don't have him locked in with a marriage. Right? So he could just blow Yeah. Oh, sorry.

Cassandra 58:51
Now you're good. All my life secrets.

Scott Benner 58:53
Yeah. Cassandra, does he get the dog or do you get the dog if we split up? What do you think? Oh,

Cassandra 59:00
it will be me because I bought the dog in the first place and brought it into the relationship. I see. Technically my dog

Scott Benner 59:09
financially you are responsible for the dog. My my my only financially?

Cassandra 59:13
Oh, my my boyfriend always points this out. Especially for the evening work. If your doc

Scott Benner 59:22
Cassandra, you're making me laugh because the other morning, Kelly and I woke up and we just didn't have anywhere to be or anything to do. And one of our dogs still had to go out and we I was planning on sleeping an extra hour and she's like, Yeah, thought the dog out and I got out of bed. And as I got out of bed, I said and I want to quote myself here because 100 Because I want to be sure people know exactly what I said. I said I told you not to get that same dog. And and I love the dog. I swear to you. I do He's really amazing. He's 15 years old. We take immaculate care of him. He's a, he's a, he's a terrific dog. But in that moment, all I could think was, I warned against this, and no one listened to me. 15 years ago, I knew that one day this was gonna happen to me. And here we are. And it's not just one time, obviously. But that's hilarious response.

Cassandra 1:00:20
But it's pretty much how it works here.

Scott Benner 1:00:23
Yeah, of course, I heard what you were saying you were like, hey, this, this bomb doesn't help me with the dog. I heard it. I know what you

Cassandra 1:00:28
know, that's just like in the critical situations, the responsibility falls on my son.

Scott Benner 1:00:36
in critical situations, the responsibility for

Cassandra 1:00:39
like, if if it will be an advantage to stay inside and responsible for?

Scott Benner 1:00:49
Okay, I say my last question for you is not fair because you haven't had time to think of it? Or maybe you have maybe this is something you've thought about a million times. And this is why I'm asking you, knowing that a lot of people with diabetes, you're gonna hear this. If I mean, if I give you a forum to talk to them about their care, can you? Can you articulate to them? Why it's so important? I mean, not that your story doesn't, but how, you know, I mean, just managing your blood sugars and keeping spikes away and keeping away scary lows? And, and I mean, I guess I'm asking you to tell them, like what a difference it would have maybe likely made in your life?

Cassandra 1:01:36
Yeah, that's a good question. You know, I guess it goes pretty much into the philosophy of your podcast. Because if once your settings are dialed in, and you have a stable base rate and two nights, and you Pre-Bolus, it's really not that much of an effort once it's dialed in. But you just have to make this leap and make the effort to dial everything in and then I mean, but on a day to day basis, it's not that much of an effort to adapt a carb ratio or Nyasa. It really isn't.

Scott Benner 1:02:25
Yeah, it's it's settings Pre-Bolus thing, understanding the different impacts of your meals addressing high blood sugars without waiting too long. That's pretty much it, right? Yeah. Yeah. Yeah, I joke with people all the time. Like, somehow the podcast has 700 episodes, but it could be 12 minutes long. You know what I mean? Like, it wouldn't answer all your questions. But if I said exactly what I needed to say very succinctly, that's what I would tell, you know,

Cassandra 1:02:53
for the technical part, you're right, yeah. But I really enjoy also the stories of the people and the community. I mean, even if I like if I think like, yeah, a type two podcast, but what will I get from it? It's still very interesting. Interesting to hear the stories and I always learned something.

Scott Benner 1:03:17
I'm glad I do, too. I learned something every day. i i record way more than you guys probably think I do. And it's, every day in my life, I talked to somebody who's either found their way through something searching for something, you know, they're lost, or and you can kind of try to help them where they figured something out, you can help them share it with somebody else. It's a It's I have the best job. I really do. And I'm really glad that you enjoy it like that. You know, I'm looking here. What I'm looking at this link, I've been wondering all day, if if Xolair could help with rheumatoid arthritis,

Cassandra 1:04:05
no impact on it. So because it's not an immunosuppressant per se

Scott Benner 1:04:12
okay. I didn't listen. That was like literally I know nothing, but I just kept wondering, I found this one thing.

Cassandra 1:04:20
But I mean, do you want to know a fun fact about solar and the other drug for the air? I take? Both made from Chinese hamster ovary.

Scott Benner 1:04:36
Whoa, whoa, whoa, stop a second. Are you trying to name the pot? Are you trying to name your episode? Hold on a second. Xolair Chinese hamster ovaries. All right. Well, this is gonna be Google for the ages. I must be the first person that Google this almost like I

just clean up my terrible spelling. And let's see Solair Chinese hamster ovarian cells, a recombinant human through monoclonal antibody, that's okay, so there is a recom, accomp, recombinant humanized monoclonal antibody. There's words we all know now since COVID, that selectively binds to a human IGE used to reduce allergic reactions. Actually, the Xolair, which is the brand name, let's see, is manufactured by recombinant DNA technology in a Chinese hamster ovary cell in a Chinese hamster ovary. So that's why it's made of them or it's made in them.

Cassandra 1:06:03
I'm not quite sure from what I read, I understood that. They kind of took cells from Chinese hamster, and they ever since duplicated it. Somehow,

Scott Benner 1:06:20
Solaris produced by a Chinese hamster ovary cell suspension culture in a nutrient medium containing the antibiotic Genta myosin gahoo who give her give her read stuff like this, Cassandra and think, who figures this out, I am not helping society at all. Like like I could, in a million trees. You gave me a million years and said, Hey, these hamsters right here could help people with like asthma and like, you know, other, you know, kind of allergic reaction kind of stuff. Go figure it out. I'd be like, Listen, tell those people. They're screwed. Okay, because I am never gonna figure this out. That's insane. It really is. I hate to say that, but you really did just name your episode Chinese hamster ovary. I'm happy with that. You're gonna have to be because it's one it's gonna be called Cassandra. Wow, that's that's really crazy. Well, good for smart people. That's That's wonderful. Who the hell? And Chinese hamsters are the little?

Cassandra 1:07:28
They look cute. Yeah.

Scott Benner 1:07:29
Are they the little fat ones? I'm trying to or no. Are they the little? I can't remember. I haven't worked. You know, I worked in a pet shop as a child. Did you? I did from the time I was 13 till I was 16. Oh, wow. They almost look like Jerboas a little bit. But but not. Oh, here's the Oh, man. I say if you're buying a pet. The Chinese dwarf hamster is incredibly cute. Have you just got routinize but it's got a funny like interesting fun face. But regular Chinese hamsters. I would describe them as looking almost like lean journals.

Cassandra 1:08:05
But I actually almost wanted to become a unicorn. But maybe now it's just a Chinese hamster.

Scott Benner 1:08:11
Maybe you're just gonna become a Chinese hamster. Do you ever after the Xolair? Are you ever inclined to chew on wood?

Cassandra 1:08:21
So much? Do you are you ever

Scott Benner 1:08:23
inclined to chew on wood after you get this all there?

Cassandra 1:08:27
No, I don't think so. No, you do.

Scott Benner 1:08:30
You never want to pee in some hay or anything like that afterwards another.

Cassandra 1:08:33
No no, no. Yeah. Well, wow, that'll send you a note if it has,

Scott Benner 1:08:40
well yeah, if you find yourself starting to pile up bedding in the corner and peeing in it, please do let me know. I would love to add that to the episode. Because I can't thank you enough for doing this. You were really terrific UVA. You know, obviously some heavy stuff going on in your life and you shared it with everybody in a very light way. I thought it was terrific. What you just did.

Cassandra 1:08:59
Thank you so much for having me.

Scott Benner 1:09:01
Oh, it's my pleasure. Hold on one second. Okay. Yeah.

I want to thank Sandra for coming on the show and sharing her story. I also want to thank touched by type one of course you can find them at touched by type one.org and also on Facebook and Instagram. And last but not least, ag one from Athletic Greens head over now. Get your free one year supply of vitamin D and five free travel packs when use my link, athletic greens.com forward slash juice box. Rod said okay, so thanks for listening to the show. I hope you enjoyed it. I'll be back very soon with another episode. And I hope you go find the private Facebook group Juicebox Podcast type one diabetes on Facebook. It's a private group with over 33,000 people just like you