#145 Is Your Insulin Compromised?

Cold supply chain management is important...

Alan Carter is the author of the study, "Insulin Concentration in Vials Randomly Purchased in Pharmacies in the United States: Considerable Loss in the Cold Supply Chain" and he's on the Juicebox Podcast to explain what all of those words mean.

You can also listen to the Juicebox Podcast on: Apple Podcasts/iOS - google play/android - iheart radio -  or your favorite podcast app. Now on Spotify.

+ Click for EPISODE TRANSCRIPT

---

DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello, welcome to Episode 145 of the Juicebox Podcast. Today's episode is sponsored by Dexcom. And on the pod, we'll be talking a little more about both later in the show. And there are also links in your show notes. But at anytime day or night that you get the feeling like you want to just know more, you can go to dexcom.com Ford slash juice box, or my Omni pod.com forward slash juice box. In the beginning of 2018, a study came out that said that they found that insulin can degrade during the shipping process. And it went out in the public and everybody got very upset about I got a lot of notes from you guys. A lot of notes saying hey, can you please find the person who wrote this this study and find out more? And so you know what I did? I found this episode is with Alan Carter, Alan is the lead on the study. The study is called insulin concentration and vials randomly purchased in pharmacies in the United States considerable loss in the cold supply chain. Okay, listen, a couple of things. First of all, nothing you hear on the Juicebox Podcast should be considered advice medical otherwise. But second, don't let that kind of boring title to Alan's paper throw you off here. This is a really good conversation. Alan has done a lot of work for people with type one diabetes over the years, he works for a nonprofit. And he's insanely good at describing this process. without it being let's just say as boring as the title of Alan's paper, which is very good. Even at the end, we'll offer an email address. If you want to read the entire paper, all you have to do is email him he'll send it to you. I mean, come on. What a good guy. All right. You guys ready? This is Alan Carter. I don't know what to call this episode. Because I don't think I can call it insulin concentration of vials randomly purchased in pharmacies in the United States considerable loss in the cold supply chain, going to have to think of something else.

Alan Carter 1:52
I'm Alan Carter, and I'm a farm D pharmacist with 40 years experience working with patients with all kinds of diseases, including diabetes, and I've done some work in monitoring, helping people monitor their diabetes outcomes, using alternative tests such as fructosamine. Besides just blood glucose, I took an interest in why biosimilar insulins might be problematic and they apply in enough patients have had issues with their control that they couldn't determine anything else other than maybe the insulin wasn't quite as potent as they were expecting it to be. And I thought this would be a good idea to compare two different insulins to see how much difference we could find

Scott Benner 2:40
interesting. So on you, and I'm assuming there's other authors on your paper. Are you the lead? Or how does that work?

Alan Carter 2:47
I was the lead as the guy had the bright idea to try and do this and then convinced MRI global to write a grant to look into it further. Just to see what kind of differences might be there since we do analytical work for a lot of government and private clients in drug development and stability testing and various other activities involving toxicology and pharmacology. And I've been doing so for over 40 years here in Kansas City.

Scott Benner 3:23
Wow. Okay, well, so this paper, the title of this paper is insulin concentration vials randomly purchased in pharmacies in the United States, considerable loss in the cold supply chain. And when your paper published, and it made its way around the diabetes community online, I think it really was alarming to people the idea that it's so can you explain just how you started, but it's such a simple concept, but you guys went into a pharmacy and what do you do?

Alan Carter 3:52
Well, I, we have a pharmacy here at Kansas City that I'm the manager of and we support clinical trials throughout the world for National Cancer Institute. And through that I could acquire insulin directly from our wholesaler. And having been a pharmacist in community pharmacy for many years. I also know that there's different wholesalers around sugar yet and I thought well, this would be a good opportunity to watch a variety of launch to see if we could get any detect any changes between lots a lot and different manufacturers to compare to to see if the insulin concentrations would be what would be expected and any other breakdown products that might be there from shipping and handling. Just as a what if type idea and in order to get a variety of lots in a fairly short period of time. I am from different wholesalers I know of other pharmacies here in Kansas City for my years of working with different people. And I arranged to pick up and have purchased some insulin from them and mph and regular our over the counter type insulins. You don't have to have a prescription for them, I could go buy them as a consumer and I which store is bought from different wholesalers. So I managed to collect over a period of time, the different lots and stored them in our refrigerator in the pharmacy till we got ready to move them to the laboratory for analytical work. And our refrigeration systems here are based under what they call Good Manufacturing Practices standards. And we have, which is better than most pharmacies have. We're monitoring our refrigeration and freezer temperatures 24 seven, so that we can tell whether it gets too hot or too cold to last a little better than average pharmacy as most pharmacies just check it twice a day with a thermometer and refrigerator, which should be good enough that we were trying to ensure that we didn't expose it to any unusual handling, once we had it in our hands,

Scott Benner 5:51
right. And when we stopped them think about this idea that this insolence manufactured somewhere that manufacturer keeps it cold, they ship it somewhere, that person has to keep it cold has to stay cold during the transportation process, it probably gets shipped again and again before it hits a pharmacy. Or maybe you have a mail order pharmacy that you get your your insulin farmer maybe you know, whatever, there's just there's so many leaps from the moment, it's manufactured to the moment you get at home in your refrigerator, which, you know, none of our refrigerators are probably even as close to being you know, perfect as, as you would hope, you know, as the pharmacy might be. But there's just a bunch of opportunities for it to get warmer, or to be stored at a temperature that's not optimal. Can you tell me when that happens? What happens to the insulin when it's not kept at the right temperature?

Alan Carter 6:45
Well, as it gets warmer, it breaks down on a fairly linear rate, which Lily in 2003 provided a comment showing it degrades at about 1% a day, if it's at room temperature 77.1% a month, which at room temperature is 77 degrees, but it's linear, the higher the temperature, the faster the degradation rate is, but it'll still have some activity to keep in refrigerator, it loses point 1% of activity per month. So refrigeration would be preferred. But the problem of insulin too is you keep it in refrigerator and it gets frozen. And then that's just as bad as being too hot. I'd even be worse in some cases, like in the NPH. If it freezes, it actually falls out of its suspension and becomes totally unpredictable. And a lot of activity would be and it won't look quite right when you try and mix it after it's been frozen. And I've had patients have their insulin is frozen, because it couldn't afford to buy more continue to use the insulin, sometimes for several months, and have their control just go completely out of whack. Because their insulin is only getting a small portion of his activity because it's been frozen first. So that's that may be more of a problem, a cheat.

Scott Benner 8:02
So there's this concentration of activity that the the insulin has. And as it breaks down, it loses its effectiveness. And and it's funny because I was just thinking about it getting warmer, but now you're talking about if it gets too cold, if it freezes, you have a similar if not worse issue. And so what did you because you and I spoke previously to this because we didn't know each other. And I reached out I told you that I really would like to shed more light on what you did and at the same time. My my my overarching concern is I believe that when people are managing their type one diabetes, sometimes the biggest mistake they make is they they sit around looking for reasons like something doesn't go exactly right. And they'll stare at a blood sugar of 250 for three hours trying to figure out like did I miss count the carbs that you know, what did I do wrong? And you know, part of what they think is maybe it's the insulin and by the time you go through this incredible checklist of things in the waiting, it's always sort of my idea like just more insulin, like if you're higher, just use more, you know, maybe the reasons important and we can figure it out down the road. But in the moment, I get scared that in the moment, people will get frozen with the fear of there's so many variables that they can't figure out what happened and they end up not doing anything. And so as much as I want to shed light on this, I don't want to scare people into thinking that this is one more thing for them to in their day to day moment to moment to be overwhelmed with and so I really do want to understand clearly what you guys learned so can you can you help me a little bit understand that what the what the paper is telling us because I'm not nearly smart enough to read it and make sense of it well, and

Alan Carter 9:41
and it's it is one of those things where you give yourself a dose of insulin and you expect a certain response and you start a new vile, good to monitor your sugars carefully for the first dose or two to make sure that it's Your body's responding to this particular lot the same way it did on a previous slide. And as insulin is in your care and in your pump and getting to body temperature, it may be slightly less effective over time as it's been for three days in the reservoir, before you change it out, so there may be a little bit there. But as long as it's losing potency, if you're using a pump system and continuous monitoring, you'll be able to increase your dose of insulin enough to offset the high blood sugar or alter your diet. And it's just when you use that first dose out of a new vial, it may be more potent than the one you just had for a variety of reasons are being handled. So again, most diabetes patients know that just by experience. And so to not panic, just if but that the other side of the coin is if you're doing everything, the way you've been prescribed, and you're following a same routine, and you get a number that doesn't make sense, and you don't know what you're sick. It's possible insulin is not as potent, as is what you expected it to be.

Scott Benner 11:09
Right. And that's something that we all assume and guess and everything but but what you guys did sort of proved it out, which is so so what did you learn that when you when you bought these different lots from the different distributors. But what came to what came to light,

Alan Carter 11:26
I learned that it looks like the insulin is handled very similar, but from promise you the next that that the supply chain may affect may affect the concentration of insulin that's active in the vial throughout the region, I mean, this is just a snapshot in the Midwest, you may have a completely different outcome and the east or west coast, north or south, it could vary from season as well. So but the average insulin, if it's a little lower and his potency, on average, your systems can adapt for that and you can increase the insulin dose, and you'll do just fine. It's just when you get a new vial, it's significantly more potent than the previous one you've been using. And that can be because you've used the vial too long, you've kept it around. For too many months after you opened it, you're going to potentially have a low blood sugar reading if you give yourself the same dose as you gave on a previous vial. And that's and there is no recognized method or an analytical lab to pull it out of the vial and check and see once in a while just to spot check to see how the supply chain has affected the concentration based on what it was when I left the manufacturer. There is no recognized method for that. And I think that needs to be standardized and agreed upon amongst everybody

Scott Benner 12:52
because you you know the retail side of it and what happens. And so all these steps plus it hits retail. And what ends up happening is you put this insulin in so many different people's hands. And when you leave it to their their best intention, it's their idea of what the best thing to do is and you're saying that that there needs to be rules in place that they have to follow. And this will keep the not only the standard level, but hopefully the quality of the insulin higher and more slow. And I

Alan Carter 13:21
would I would postulate that it's a good idea or the system to have a way of this spot checking product at the pharmacy level, at the end of the supply chain just before it reaches the patient just to make sure any drug is meeting his standard, the minimum amount the FDA says are supposed to have in the label. And his quality is assured because what we're running into is a global supply chain. And the global supply chain introduces even far more risky transportation factors potentially than what we currently face. And now that we're thinking of Amazon getting into distribution of drugs, and insulin could be one of those medications as they distribute cheaply and people need to afford their medication absolutely have to afford it. Well, they reach for the lowest cost possible, you have to make sure that you're the delivery of the drug product to the patient is beating the quality it should meet based on original FDA approved release standards.

Scott Benner 14:21
Yeah. And if you test along increments, so you're saying just you randomly pull a vial from a shipment and it gets tested on site. And if it reaches you at your step and it's not good, then maybe you know, the last step was the issue or whatever but it but at least it doesn't reach people. It's such an odd idea, right that this well intended medication leaves the manufacturer and that along the way, the idea is sort of hands thrown up in the air like well, if it gets to you good, it gets to good and if it doesn't, what are we going to do about it?

Alan Carter 14:49
And that's the that's the concern I've had because I've seen other medications that have what they call a narrow therapeutic range and was Human Being example. It brand name was work great. And we had people switch to the generic and they had issues with bleeding. And nobody could figure out why when I finally analyzed the generic version, and it was 101%, of what it labeled said, You're allowed, plus or minus 5% of that hundred percent labeling, so it was supposed to have 100 milligrams in it, you can have 105, or as little as 95 milligrams is still be considered to be accurately representing what's on the label. Oh, I had 101. And consistently a lot a lot, they did a great job of manufacturing, the brand name that 97 98% level on that little difference was enough to make people have a bleeding issue. So it can be that that close in that narrow and nobody's doing anything wrong. But if you throw in something that's, you know, affected by the supply chain, such as insulin and biologic products, then then we probably need to keep a little closer eye on on what the supply chain impact is to that particular medication because it can be detrimental. Yeah, that makes sense.

Scott Benner 16:08
No, it absolutely does. And it's there. You know, different people are with insulin trying to make different accomplishments like my daughter's blood sugar is she doesn't feel well, right now, she's got a head cold. And her blood, her blood sugar, I can see is 130. And in my heart that's high, and I'm trying to do something about it. But when you get down to these kind of low tolerances, where you're just talking about a couple of points one way or the other, it is very important for the insulin to react the way you're expecting it to. Especially if you're not trying to, you know, you don't want to cause a low. And at the same time, people who are less comfortable being you know, aggressive with the insulin, they're also in a space where the efficacy of the medication could be the difference between 50 and 100 points in these higher ranges. And then, you know, it's even more frightening to make these large boluses. at a higher range. When you can't expect you already, you know, you're already more insulin resistant when your blood sugar is higher to begin with. And now if you can, at least, at least hope that the insulins going to do somewhat near what you expect it to do. And right. I mean, I'll tell you this, that, you know, my daughter doesn't use, you know, we have, she uses an ami pod. So every three days, her reservoir gets changed out. And we fill the pot up to its capacity, which is 200 units. So when I open a new vial of insulin, my house is kept pretty standardly, right? between 68 and 70 degrees, it doesn't get much hotter, doesn't get much colder. Once we open a new vial of insulin, we don't actually ever put it back in the refrigerator. But it's probably gone in, you know, a couple of weeks. And I don't know that we've ever had an issue. I've never think about the insulin as being like an issue. But what do you think of that? Do you think I should be putting it back in the refrigerator? On the pot is, in my opinion, the very best insulin pump on the market. Arden has been using it for almost a decade now it feels like I don't know she was four years old. She's 13. Now that's almost a decade right? And we could not be happier. My daughter's a one C has been between 5.6 and 6.2 for four years. A huge part of that is the technology that we talk about here on the show the dexcom the Omni pod but all of the great adjustments that I make with Omni pod, all the ability I have to give her insulin in situations when other people's pumps have to be disconnected. None of that exists with Omni pod. We can keep Arden's insulin delivery where we want it. And that is how we stay in control of her blood sugar keeping it manageable. You don't I mean not out of control and those spikes and craziness I mean it happens sometimes it happens everybody but I'm talking about for the most part. The freedom that the Omni pod gives us is it's unmatched I don't see anybody else that can do it. I want you to go to my omnipod.com forward slash juice box gonna throw out a tiny bit of information when you do on the pod is going to send you out a free no obligation demo pod. You can try it on and see for yourself now there's there's nothing better than that. It's free that absolutely no obligation like I said nothing no reason not to there's no strings attached. No strings attached the tubes attached. I mean, you see what i'm saying right now? Give it a try. There's nothing to lose it doesn't cost you anything. And I think you might agree with me once you get it you say it. My omnipod.com forward slash juicebox manage your blood sugar the way RP does.

Do you think I should be putting it back in the refrigerator?

Alan Carter 19:47
No. Big Bill man you're also using an insolent analog and we did not use look at the insulin analogs and that should be the next step we look at to the the regular mph or the arm originally. Developed in the 80s analogs have been even when we don't have great information on what its stability is once opened, other than the manufacturer says it should be thrown away within 28 days. So there's some question there, maybe they are more stable. And then when you put it in a reservoir, your body temperature is 98.6, if you don't have a fever, and that could affect how they believe something is over three days, but doesn't appear to be an issue based on everybody's experience. So that that part of it, if you're doing it, that way, you're fine. The only thing I would, you know, anytime you open up a new vial, that's from a different law that you've had before, there is a slight chance that it will have either more or less potency, but if it's a little under it, or a little over, it should be fine. You're not going to have it crash. But if you're running really, really tight control there's some people want to do, then that change maybe enough to trigger a lower low than what you anticipate or a higher higher than what you anticipate based on your dose, because there may be some variance between those files.

Scott Benner 21:07
So it's definitely I'm sorry, okay, okay.

Alan Carter 21:09
But I just was thinking outside the box, if you had some way of testing that vial at home, to make sure that it is, you know, got intact. So there's some had some way of doing a test strip on it that might be helpful in making sure that you're assured that your insulin has not been frozen, or or been too hot at some point in time.

Scott Benner 21:29
Well, that's interesting. So you know, how you when you got the the regular mph in the lab, you know, what testing you did? Do you think a test trip is, is a is a feasible idea.

Alan Carter 21:40
It's, it's a interesting thought and idea, and we have some really cool technologies now, and I have a few friends and colleagues that have fought that might not be a bad approach to think about. So I believe there is some interest in at least the academic world to do you think I mean, so it's a challenge to see if you could find some way of creating a a home testing kit that will let you check once in a while your, your insulin concentration, just to make sure because if you get it in the mail, it could have been exposed to extremely high heat, or it could have been frozen. And you would know that if it had reached a room temperature or refrigeration temperature when you got it somewhere along the line, it might have been damaged. And you would know it nobody would know this wood vials are enclosed in cardboard boxes, and you don't see them until you open the box. Right.

Scott Benner 22:37
You know what I was just thinking? And maybe what you just said made me think is is the answer possibly that there's something in with the shipment, that is an indicator if you've left a range, I don't know if that would that would be if it's a if it's a monitorable. You know,

Alan Carter 22:54
there are temp track devices that we use when we ship products to various trials and things and are used when you have a temperature vertical product, and you can put it in the center of the box, and it will or near the center, and will give you the average temperature that that box has been exposed has inside of it over a period of time until you pull it out and and stop the the tracking. And you can download it onto a computer and see the graph on a Adobe Reader. It's very easy to do, they're not terribly cheap. And they tend to do it on large shipments. But it measures just like the monitors that we use in our refrigeration or anybody's refrigerator. It's the sensor is in one spot and it's giving you the average temperature for the whole refrigerator. Doesn't mean that one corner doesn't get below the temperature or above the temperature you want to set it for. Have you ever put anything in refrigerator and thinking Oh, it's it's fine. Go back a few days later and pull out is frozen,

Scott Benner 23:50
right? But not everything else refrigerators for us. But

Alan Carter 23:52
not everything's frozen refrigerator. So that happens and it could happen in a shipment too. If you've got a shipment of insulin is sitting too close to the cold pack and that cold pack happens to be too cold or the outside temperature is cold and older than anticipated during shipment, it's possible that that vial or that pin that's closest to the cold pack might partially freeze. Now the agitation of shipping and stuff like that should keep it somewhat mixed, but it may not. So this possible that a portion of it might get too cold or too hot, and the rest of the shipment temperature track would show that it stayed within the expected ranges that you need to keep it so those things could happen it'd be just a simple luck of the draw and it could be that our results on what we found were happened to just be vials that got excursions beyond the temperatures they should have been. And if we went back and tested the same did the same kind of test later on a different shipment. They may be just fine. You know

Scott Benner 24:54
what I'm realizing here is the the penguins have already answered our question. You just have to find a way To mechanically duplicated, have you ever seen penguins keep warm and they create that kind of that circle where we're the one in the middle and they walk in and out? Yeah, they keep. That's like Joe Allen, just go figure that out.

Alan Carter 25:14
Okay, yeah, so it's, uh, yeah, we don't want to put any kind of panic into anybody. It's just an awareness, people need to be aware of what might be going on. And I've had patients complain that the insulin that they got from the pharmacy just didn't give them the results that they got from the previous dispensing, and they get a new vial or a new box of pens, and their control shows back up. I've had two patients in the last 15 years that can actually show me their diaries that included their food intake and exercise that I haven't changed anything except I changed, I got the new insulin. And my control started to slide out of control on I was having to use more insulin or are it wasn't uniform and how I was seeing and I didn't change anything else. We think it was useful, and I'm playing well, and you must have been sick, or you mentioned the medication you try any herbal supplements. Did you have any alcohol to drink? Did you know I didn't change anything except my insulin. But we as clinicians, tend to think well, that there's too many variables here. And it could never be the insulin, well, that may be the insulin. And we don't just need to discard that information when it's reported, and the patient may be telling the truth. So they didn't do anything different. And maybe it is the insulin. So we'd like to have some way of uniformly determining whether it was the insulin or not, because I hate just guessing. I don't like to guess I'd like to know,

Scott Benner 26:41
it's worth knowing. And it's worth, it's worth trying to understand that that's for certain Do you think do you think that from the pharmaceutical? And do you think that that is just the cost of doing business? Once in a while you're going to get a vial? It's not as good as the other ones? And do you think that there's just nothing they can do about? How would you like to be able to see your child's blood sugar 24 hours a day whenever you want to? Sounds good. When they're at school at a friend's house it asleep over in the backyard playing baseball, playing football? How does that sound? Do you have an iPhone or an Android phone? Because it works with both? Hmm?

Unknown Speaker 27:15
You like that?

Scott Benner 27:16
I know you do. How about this? forget to share for a second, how would you like to know that your child's blood sugar is starting to creep up or beginning to fall? Or oh my gosh, falling really quickly or rising really fast. You thought you did the right Pre-Bolus at lunch, but all of a sudden bang, it's your blood sugar's flying up, you would know that without an Dexcom. If you're just testing, there'd be no way to see that Dexcom is going to tell you right away, hey, you've told me to let you know when you've gone above this blood sugar. And you are and by the way, it's happening quickly. So here's a an alert that tells you not only are you going up, but you're going up fast. This gives you an opportunity to jump right back into the game and make an adjustment. You take a spike that was gonna go to 300. And you stop it. It's amazing. This is information you have to have. This is the kind of information I use constantly all day when you hear me talking about the things that I talked about Pre-Bolus garden for lunch, eating carb, heavy meals, all that stuff is made possible with on the pod index calm. To find out more, please go to dexcom.com forward slash juice box, or hit the link in your show notes and get started today. If you're not using a CGM, I can't I can't stress enough that I think you should be. Alright, listen, let's finish up here with Alan. And then let's get you back to your life. All right. But don't forget that comment on the pod this week, use the links find out more.

Alan Carter 28:49
I think the manufacturers are concerned because what they want to ensure that you get product is good. I mean that that's how they make their living. They can't be bad at it. Because it threatens their entire business model, you have to depend on them to be correct. And they expect to be correct all the time. But they also have to realize and they do realize that they can't control the shipping systems very well as to beyond their capability. And, and understandably so. And so and again, the cost of making insulin is not cheap. And cost of shipping. Insulin is not necessarily cheap. And if we try to make it more complicated, it becomes more expensive, which is not great for anybody. So how do we how do we practice not without causing a lot of problems. But I think the information should be at least somehow available to the public that they need to think about that Be careful how they keep their insulin and also the shippers and manufacturers need to be careful how their instrument is shipped and handled. But we need some uniform. The biggest challenge we have is trying to find a recognized method to test it and there isn't any And manufacturers haven't shared that information because that's considered proprietary information. They don't want to give that away. But how do we how do we verify this? How do we double check and make sure that's true? That's what I'd like to see come out of this is that we all agree on all this method for a spot check is going to be replicable, every repeatable every time and we can get the results that we can depend on being this is what actually measurement is at this point. And then we can do a spot check once in a while to make sure and fine tune the delivery systems so that maybe we keep the insulin under better control and possibly it is rotating your, your package. So many times during shipment how we do that, I'm not sure. Or maybe by insulating the container a little differently with the cold packs. So maybe we don't get a cold spot in it. Maybe that's something we need to look at. But we need to be able to track the temperature from the moment the manufacturer puts it into while until the pharmacy dispenses it to the patient. And then the patient then can, hopefully, ideally would be able to continue to monitor that vitals temperature changes while they have it. Because things happen when in life happens. You go to on a trip and you use a refrigerator in a hotel and it raises your insulin, oh my gosh, what do I do, I always got to buy some more insulin somewhere. Because you don't know what his activity is. Or you go take a trip and you forget and leave your your thing in the car for 100 degrees outside or some reason that cars temperature gets to 180 inside, which is not unusual in certain parts of the country. Did I destroy the insulin I have on reserve in the car? Those things happen all the time every day? How do we help you determine whether you got to run out and find another bottle insulin and don't have to buy a $500 box of insulin wrenches or pins to replace the one that just got inadvertently damaged? Because accident happened?

Scott Benner 32:00
I always think that I've had this this thought out loud a couple of times. And I've actually spoken to somebody in the pharma company once and said this. I don't know why they don't just and maybe there's a million business reasons why this idea is terrible. I have no idea. But you know, people get mailed or insulin nowadays, why doesn't the manufacturer just get in the business of being that the middleman and moving the insulin directly from manufacturer to the home?

Alan Carter 32:26
I mean, you know, or manufactured likely to the pharmacy so the patient can pick it up. Right. Right. Right. And and I guess in Europe, that's the way it's done. But the interesting, one of the interesting comments has come out of this whole thing was is diabetes management experts are thinking, you know, this just can't be right. And I understand why they would think that way. But I've had response from people that have used insulin. And in Europe, they use a method where it's a pool purchase across Europe, and it's called parallel purchasing. And yes, they get it from the pharmacy. But that supply may have routed through the Eastern Bloc countries where it was originally sent to at a much lower price. And labeled in that language, then they'll re label it in English or Spanish or Italian and ship it into those countries or their citizens use. And it's picked up at the pharmacy sold the insulin has been shipped to one country as a low price, because that country is a hasn't got an economy, they can afford inexpensive insulin. And they turn around and then repackage it and ship it into other countries in Europe as a parallel purchase, though that that country also enjoys a little overpriced. And there's been one report to me that by an individual saying I couldn't get control of my insulin or my diabetes. When this started happening, as a manufacturer to check the stuff I said, well looks like it's within spec. But I was still without control. The government program allowed me to directly get it from the manufacturer, to my pharmacy or to me, and my control returned. But it already had some damage done neuropathies have started to show up because it took a couple years to figure out what was going on. And so that person suspects that that particular delivery supply chain is bad for the quality of insurance that they've got, and they had some adverse outcomes because of that. So there's that's just one anecdotal report, but that's some of the feedback we're getting patients is that the supply chain just seemed to impact the quality of the insulin and it needs to be improved. Taking care of your diabetes is already it's already hard enough like by the variable,

Scott Benner 34:47
but they're big, but the thing to go through that entire process and the insulin you're using isn't effective is just by that is it makes it feel like the The whole thing's just a waste of time and a disaster,

Alan Carter 35:02
you know, and you don't want to do that, right. But at the same time, it's always, I grew up in Missouri, and I work in Missouri, Missouri is what's called the show me state. You can tell me everything's good. But you got to show me once in a while, that it'd be every time but at least I want definitive proof that, that I'm getting what I'm getting, and what's being discussed is true. And so that's kind of what I feel here is this, we just need to check once in a while and have some mechanism which everybody agrees on is a good way of doing it. And and look at the insolent quality periodically, doesn't have to be every lot or every day, but just once in a while check in and then come up with a better way of delivering it so that we can help ensure that it's staying consistent. When it reaches the individual trying to use it. Now, once the individual gets it, it'd be nice if you could monitor it to from home and our ways to do that as well. But because that adds another wrinkle, and but not everybody can afford to do that. Diabetes is expensive. disease to manage. And it's a lifetime. Lifetime lifestyle. And a lot of people can't afford it. To do it properly. That's why we're seeing some people revert back to the mph and regulars because you can buy mph and regular at Walmart or Sam's Club for $25. a vial. That's pretty cheap. And we used to manage people successfully using mph and regular before the analogs came out. It's not the best method day. But if that's all you can afford, that's what you get to go with. Yeah,

Scott Benner 36:34
right. Well, so the said what you've done so far with, you know, tracking the mph in the regular, do you have any plans to do it with the analogs with the Nova Nova logs,

Alan Carter 36:44
and we'd love to get a group of people together to determine the best method to do this and an a and a usable, workable protocol to follow that mimics real world situations, which is what we tried to do with the way we collected the vials, we tried to mimic what you would do if you're a patient about in the pharmacy, or we've got to dispense to you and you got a 90 day supply, and you've kept it in your refrigerator at home. And so in a variety of different lots that you might get over a period of time we tried to duplicate that. But to take that type of concept that we're using a real world snapshot periodically to look at it and using a an agreed upon analytical method to determine how much insulin is in the pan or the while and as much as the intact insolence. How much is the breakdown products probably would be necessary to do a a test to see what the impact is in a person through controlled trial of what to call insulin clamp studies using that same lot to see how well it up what effect it might be on raising or lowering your blood sugar. To do a comprehensive look, at least on occasion, just as an insurance policy I like to think of it is just we got speed limits on highways. Does everybody follow the speed limit? Because there's nobody watching by looking to see if you know the sheriff's two miles down the road and running the radar trap going to slow down well maybe that's what we need to just once in a while check an FB everything this so that the supply chain is being least monitored a little bit. Right now there is no monitoring of the supply chain that I'm aware of.

Scott Benner 38:30
Right. And and in the supply chain if you're if you're one of these steps along the way. And like you said, no one's watching, there's no real onus on you if you want to cheap out if you want to be less safe with it, because once it gets that it's kick the can once it's that far down the road, it's off your shoulders, nobody can prove it was you so

Alan Carter 38:49
and that's why the manufacturers are concerned too is because if it's if it's not quality, and they have to take it back then it's a loss. It's kind of like a counterfeit $20 bill. If if you're caught with a counterfeit $20 bill, you eat the loss, it's it's your problem. There's nobody to pass it back to and manufacturers I think are concerned that they would be forced to take stuff back that they have no control over. It's not their fault that it got exposed to bad temperature. So sort of a What I don't know is, is good for me. If I know too much, then it might be bad for me. And it's not just the manufacturers, whoever happens to have possession of the insulin.

Scott Benner 39:24
It's interesting when you really stop and break it down like this and think about it. There's no it's easy to be upset. Like when you hear something like this, I think people's minds go right to the pharma company, right. Like that's their fault, but it's his fault is is spread out all over the place and maybe not even, it might not even be fault. There could be there could be a link in your supply chain that feels like they're doing everything right and they're not and they don't even know and that's slim, right?

Alan Carter 39:53
It's correct and it is and I we definitely do not blame pharma for this. I mean, it's possible Really remotely possible with somebody who's running really poor quality control? But that's, that's just impossible to believe or even think. But the reality is the supply chain is really the the weakest link in the chain is the supply chain itself, and how do we look at that and address it and correct anything to reduce the risk, you're not gonna eliminate the risk just to reduce the risk that the insulin arrives in your hands as a patient in the concentration that you expect it to be. So that you can use it and rely on its activity. And understanding that there's going to be absorption differences, day to day based on your site of injection, there's going to be differences in your activity and your caloric burn or day to day, our our there are variances in diabetes that you just cannot address. But if we know the insulin is within a certain range of potency, when you get it and you know how to take care of it when you're at home. And you're monitoring that too, then you've eliminated just

Scott Benner 41:03
one last factor. No, yeah, you will, you know, I mean, if we're being fair sitting here talking like that, the pharmaceutical companies have the power, they're the ones paying the shippers, they can they could put constraints on them and say, Look, you have to do this, this and this, or you don't work for us anymore. And I'm assuming that's a fairly large account that these people would not want to lose. And so I you would think you could strong arm the shippers to do the right thing? Because that is once you do that you raise the cost. Yes. And are already complaining about the cost now,

Alan Carter 41:38
right? Oh, that's the other side of the coin is is to do it right? On a cost more money? Mm hmm.

Scott Benner 41:45
Yes. So we're stuck in a perpetual circle of well of what was good enough and at what price?

Alan Carter 41:52
Right. And that's what we like to dis determine what's good enough. And right now it doesn't look like based on art data, it may not be good enough, can we improve that without making it ridiculously expensive. That's the goal. And could be used now with technology we could get. They could put a temperature tracking device that would work either on every box, or in every shrink wrap group of insulin because they usually come in a package 10 vials in a shrink wrapped package. If you buy enough of them. That's all it'll show up for you to help in shipping and packing. And have a monitor at least in that level. And how big a level Do you keep keep that monitor and monitor it from A to Z point A to point z. And ideally, if you could move that monitoring capability to to the patients, and then it would help them keep track of their insulin temperatures during everyday life.

Scott Benner 42:53
So what did you do when you when you finished the paper? Did you pass it on to industry? or What was your you assume he know that it exists? When

Alan Carter 43:01
we ran this, we were trying to see what other differences we could find is one we weren't looking for a concentration insulin specifically, we want to see how much different the two biosimilar products because they're not technically while similars. But in reality, that's what they are they NPH and regular been made for years by two different companies. And they're made different ways. But they're supposed to be human insulin at 100 units per milliliter concentration. So we thought, okay, it's human insulin. And there may be slight differences in what else we might find in the vials. Let's look but the very first step is to identify the insulin, because we have a USB standard to do that with and we can make up a USB value of 100 units per mil solution treat it the same way we do the insulin withdrawal from the vials for injecting in a machine LCMS device to measure it, or we should have a known standard and then measure the house against it. And we got the data is like what happened here doesn't match what we expected except one wild came really close to what we thought our target should be 94.2 that's, that's within a sneeze of being exactly what it says is supposed to be on the vial. So we were trying to figure out what we might have done wrong. And as we tried to dig into that data, we found it there is no documented way to look at insulin in a vial to check its true concentration that we can find manufacturers have it but they don't want to share that information. And then we tried to figure out who would be interested in looking at this information to see what it might be. And really it was kind of like a hot potato. Nobody wanted to touch it. And I understand I mean, it's so controversial. You don't want to blow things up without some kind of way of determining it. But since there is no documented way that we know of to cross check all this stuff. It's just original data. And we'd like to see it move forward with additional testing, using methods that people agree on is the best way of doing it. And checking the analogs, probably next, but we need to make sure we're all on the same page before we start down that path. And finding somebody to fund that has been a challenge. And as it is a hot potato, nobody really wants to own this.

Scott Benner 45:23
Yeah, who wants to prove that that might not that that might be true, also, that it's, it doesn't benefit anybody, anybody who you can get money from to do the study? That's for certain. Yeah. Well, Alan, I appreciate you coming on and explaining this to me, because I saw, I saw your paper, it came across my feet a couple of times. And I looked at it and I thought, Oh, that is really interesting. But then I actually started getting notes one day from a bunch of people who were like, Can you find out more about this? And I said, Well, I can try. So I appreciate you responding so quickly. And getting on so quick. We're actually going to put this up next week so that people can can listen to it and try to understand better, is there a place I can point them to get the full paper that they can read? Or is it available online as a full text, it's

Alan Carter 46:09
available as an abstract online, it does journal diabetes, science and technology. And that requires a subscription. For individuals who want to see it, I can release it on a person to person basis, which is kind of how I got started out in the general public. And I just can't release it in general, because that violates the journals agreement. So I would be willing to release it to individuals if they want to read the entire paper, which is the idea that this further use their personal use not for general release to everybody. And you could reach me at my email addresses on that contact information. Sure, I'll put it in the show notes show

Scott Benner 46:55
anybody who is anybody who really wants to dig into the into the text, there'll be a link in the show notes, you can contact Alan, he'll, he'll send it out for you. And, and as long as

Alan Carter 47:04
you don't share it in public, it'll be up. I see this as an issue that's going to take all of us to solve. It's, it's not, it's not something that one person can solve, we just need to find the best way.

Scott Benner 47:16
So at the end consumer, if they want to voice their concern, who do you think they pointed at?

Alan Carter 47:23
And well, my guess would be the FDA would be the first official group to point their concerns to and ask them if there is a way of, of doing a better check of the supply chain to ensure that the product received at the pharmacies are good, and then periodically at the dispensing point of the patient to making sure that what the pharmacies because we got no way in the pharmacy level to figure out whether it's good. We just have to assume it is just like everybody else.

Scott Benner 47:55
whole conversation and yeah, discretion. Yeah, this whole conversation just makes me think over and over again about the insulin that we're sending to third world countries that help like what, what shape is that showing up in?

Alan Carter 48:08
Well, and the other concern is, is when you get to reimportation drugs. And that's a big issue, a Canadian Canadian drug supply. And we can you can do that. But the FDA says that's not safe. This is why it's not safe as it can go to a third world country. And this has happened before, and it gets rerouted back into the general supply and then sent back into the United States or into Europe or into Australia that was never intended to reach here and who knows where it went and how much sat there. And that's what you get into with a global supply chain. You need some way to monitor the quality of that product when it reaches the end consumer.

Scott Benner 48:42
Okay. All right. So well, I wish you luck, getting funding to do it. To continue the work, I think it's really important. And I wanted to thank you very much for shining a light on it. It's obviously something we've always all this always a thought, but it's very interesting to see somebody to prove it out in the real world. So thank you very much.

Alan Carter 49:03
I thank you for inviting me to be on your program. And if there's anything I can do to help you or anyone in the diabetes community, please feel free to reach out.

Scott Benner 49:13
Thanks so much, Alan. Thank you. Dexcom Thank you, Omni pod. Thank you t you the listener appreciate every one of you. I really do. Congratulations to Amy and Jennifer for winning my last giveaway. It was a big grab bag full of bold with insulin stuff t shirts and stickers and magnets and everything. Congratulations guys. Your gifts are coming soon. Also, stay tuned. There's a lot of new news a lot of new news coming from Omni pod and we're gonna have some people on for Omni pod to talk about it in the coming weeks. We have a ton of great interviews coming up and there's always you know timely stuff like today with Alan which will slip in you guys. If you're not subscribed, please subscribe in your podcast catcher app, whichever app you're using, hit subscribe. That way you don't have to count on you know me putting it on social media and it is actually one My dream is where you guys all subscribe and I no longer have to put anything on social media which would be a wonderful, wonderful respite for me. So if you want to do something nice for me just subscribe, you make less work for me on the other side. Again, the show continues to grow. It's doing fantastic. And it does that because you guys are sharing. So thank you very much and please continue to let other people know about the Juicebox Podcast. I'll see you guys next week.

---

Donate

The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

#144 You Have To Keep On Truckin' with Type 1

Also Scott is an ugly crier...

Nickie and Scott talk about type 1 diabetes, fear, celiac, growth issues and a whole lot more.

You can also listen to the Juicebox Podcast on: Apple Podcasts/iOS - google play/android - iheart radio -  or your favorite podcast app. Now on Spotify.

+ Click for EPISODE TRANSCRIPT

---

DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
This is Episode 144 of the Juicebox Podcast. today's podcast is brought to you by Dexcom and Omni pod, you can go to my omnipod.com forward slash juice box, or dexcom.com forward slash juice box to learn more, there are links in your show notes.

This episode of the podcast is with Nickie, Nickie is the mother of a child with Type One Diabetes. She contacted me and want to talk about how she overcame her fear, just fear in general around type one, very much towards the end of the episode, this one's a little longer than some of the other ones. We learned that will has an issue with growth hormone related to maybe celiac disease. I'm not 100% sure I'm not a doctor, as you know. But, you know, this one sort of seems like it's ending when it kind of picks back up again. So kind of make it to the end. Plus, if you're one of those people who loves to hear Arden's lunchtime boluses This one was actually long enough where you'll hear the bolus and the progress of it all the way through to the end. And you can actually find out what our blood sugar is at the end of the podcast. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before being bold with insulin. I think the warning maybe makes a good t shirt. I see you guys talking about this on Facebook and social media more than anything else. Somebody asked me a question. They're always like, I know this doesn't constitute advice. And then medical or otherwise, then there's always a lot of smiley faces. So I appreciate you guys listening. Alright, let's get right to Nikki.

I appreciate you contacting me and one to one to do that. So thank you very much. Oh, you're

Nickie 1:46
welcome. I just like I'm new to the podcast, and I've been getting so much out of it. And I heard you say that one day. And I'm like, you know what I would love to connect. And you know, I love one of the things that you said recently was like, I can hear myself learning. As you were like revisiting an old podcast, like you're kind it was your hundredth episode, and you're revisiting like your 11th episode or something like that. It was on like, the fear. And that's seriously like, I finally feel like we're, we're coming out of that, because we're new to Dexcom and everything. And that just changes everything. And I just love that you said you can hear yourself learning and it's like that is life like that is I just relate so much to that because it's it's this is a crazy disease. But yet, the lessons that you learn along the way are not only like with diabetes, but with just life in general. So

Scott Benner 2:38
it's funny, because there's these moments when, you know, I'm just relating our experiences. And that's, you know, that's easy. And sometimes I there's these are things I've known for years or things that I figured out a long time ago. But once in a while I answer a question. And if you could hear my inner monologue, you'd, you'd hear me thinking, Oh, God, I can't believe I didn't know that. So like, how did I just figure this out? Now while we were having this conversation? Oh, my gosh, totally. Yeah. But the conversations are so how it happens, you know, so I'm thrilled. So I'd love to, I'd love to know a little more about you know what it's like to, to find the podcast and just sort of you know, how it strikes you because I I don't understand that part. I want to hear a little bit about you know, your life and what's going on and everything else.

Nickie 3:23
Hi, my name is Nikki Kerrigan and I am a mom of two I have a fun turning 16 on when are Thursday this week, and then I have another son will who is going to be 13 in June and he has type one diabetes. I'm married to my husband. We've been married for 17 years. He's a wine distributor. So it's kind of awesome. And I own a Fitness Studio in our in our community. So we are a really active family and we just love to connect and hike and do a lot of fun family activities.

Scott Benner 4:00
And so your son will has type one. He does. He was diagnosed How old?

Unknown Speaker 4:07
He was five.

Scott Benner 4:08
Okay, so eight years ago. Yep. I just ruined the joke that I don't know how to do math. Okay, nevermind. Wait, hold on. 5678. Got it. Okay. So five years olds are really kind of weird space because he he had he just started kindergarten.

Nickie 4:26
He actually we haven't been a five year program. So he was born in June. And so we decided like, what should we do? And I'm just so glad he was in that five program like in retrospect, because I didn't have to send him away every single day. It was like three days a week after the diagnosis. And that was easier on mom and dad. I have to say,

Scott Benner 4:45
this is like preschool.

Nickie 4:48
Yeah, it was like a like a pre k kind of thing.

Scott Benner 4:51
And so he was in and out of the house. But not every single day as he was diagnosed. Exactly. It was like a two hour thing.

Nickie 4:59
I've gone Three days a week.

Scott Benner 5:01
Now, did you? Um, did you just sit outside of it? And? or How did you?

Unknown Speaker 5:07
Yep, exactly what I did. Tell me

Scott Benner 5:10
about that a little bit, because I did it too. And I've never really spoken about it here before. But But how did you see you? Just tell me about it. That's fantastic.

Nickie 5:17
Sure. So, um, first, when when we got back, we he was actually diagnosed over Christmas, which is kind of crazy. I know, there was another podcast recently about that. And that was that struck a huge chord with me, because pretty much a lot like our story, we were actually let out on Christmas eve of the hospital. So we were a little bit before Christmas, but so we got home from the family, we were on a family vacation in another state got home. And we were like, Okay, we got to, like get back to real life, we've got to help, we'll see that this does not stand in his way. And so we first we talked to the teachers and just showed them like how to deal with Lowe's and show them how to check blood sugars, and like will was already you know, pretty acclimated to that. But you know, we just showed the teachers and I literally every day, the first day, I almost lost my mind, like walking away from him. And, you know, just thinking, Okay, you know, two hours. And so I would just sit in my car, and I would listen to music like I was, I remember just like having a CD player in my car. And I would listen to my black eyed peas CD and just sit there and like, wait, and sometimes I would drive like around a little bit in the area. But I was always right there. Because that was probably the most heart wrenching thing to turn your kid loose into the world, when they have this, this disease that feels so out of your control, like, there is nothing that you can do. You know, and

Scott Benner 6:44
even you don't really even know what you're doing. So I was always struck by the amount of things that I imagined I didn't understand. And, and we did the same thing with Arden was diagnosed when she was two, but my wife's like, you know, maybe we should just get her out of the house a couple days for like preschool to get her kind of ready for for, you know, for kindergarten, and I was like, oh, okay, you know, there's this place not far from here she a couple hours, like you're saying, and they'll you know, they'll mess around and do crafts with them. And you know, stuff like that. And I was like, oh, okay, that sounds right. And, you know, explain the whole thing to the people. And they're like, Well, look, you know, if you stay we can do it. I was like, Well, a few. All right, I get okay. And you know, and I was like, Why don't want to hang right over a shoulder. And so I'll sit I did the same thing when I sat in my car. And I came back in at like certain intervals and tested our blood sugar for things and, and it was a, it was just like, there's that uncertainty of like, you know, what's happening with her right now? And how do you like, let go of that. And, and it took a really long time. But you sound like you were really very positive when he was when he was first diagnosed about not letting anything get in his way. I'm wondering, is there any point where the momentum of your positive feelings Did it ever find resistance? Did you ever have trouble maintaining that, that feeling?

Nickie 8:00
Oh, my gosh, yes, a lot. And you know, it, we've always wanted to empower him. And we've always wanted to empower the people around him to feel like they can help and that if they make a mistake, we can fix it, you know, like, all those things. But at the same time, like all of that, and even educating family, educating friends talking about it, it's still is so hard. I mean, there are days that I just remember, like, I remember just collapsing in my kitchen in full tears, because just trying to hold that up, like, you know, you almost like will yourself to a place you want to be before you're really ready. And that's kind of what I felt like I was always doing. And then it just hit me really hard. And I just remember crying and just like really struggling and then thinking like this is not productive, like I have to get, I have to really start to get myself to that place. Because he he needs that for me, he needs to see that from the front. Always. I mean, I didn't let anybody see me or have that breakdown. That was a private moment for myself. But, you know, so I just started to talk to the social worker at the clinic. You know, even just like when I when when I was first diagnosed, I was teaching aqua aerobics at a,

Unknown Speaker 9:16
at a

Nickie 9:17
fitness center in a community, a small community, not the one I'm currently in. And it was to a lot of elderly people. And I remember going back to work after his diagnosis. And just the things that they would say to me, were so hard to you know, it's like the same conversations and the same questions like oh, how's he doing? How's his blood sugar? Is everything under control? And hearing that question, is everything under control? It's like, um, what day are you talking about? Because it is every day is different, you know, and at that point, we were just doing injections and you know, you don't have a lot of control when you have injections and it's you know, Also new to us. And I remember just having this sense of overwhelm, and just constantly feeling like, you know, yeah, I want to be this this really positive and like, I want to empower him. But then having those conflicting thoughts of, can I just keep him in a bubble? And can I just have them like with me at all times? And can I always have them in my view, I mean, it feels like sometimes I walk that tightrope, just as a mother and, you know, a caretaker of this, but I know what the right thing is,

Scott Benner 10:25
you know what I mean? It's funny, too, because the feeling that you want to keep them really close to you, is, you would think that hearing from the other from another position that you know, if it was those ladies at the, you know, the class maybe that if you wanted to keep her, we keep well, close to you, it would be so you could do a better job. So get this Phantom control that somebody is talking about, except it doesn't really matter. That that was your fear, like, right fear is what wanted you to keep them closed. The idea that if something happens, I want to be close by. Yep.

Nickie 10:54
Yeah, constantly. And, you know, like, what, what I have been reflecting on lately, because I've really, my attitude has changed so much since we've gotten the Dexcom. And what I feel like, you know, just I've had this like, kind of epiphany or lightbulb moment. And it's like, when in fitness, we talk so much about your why, you know, your why, why do you want to be fit? Why do you want to be healthy? Like what is healthy even mean? Like all those things, like we really take deep dives, we don't accept just healthy, I want to be healthy for my kids. But we don't accept that. Right? Like, that's like, Okay, tell me why, you know, what do you want to be for you and all those things? And it's like, why do I not turn that lens around to myself with diabetes, and what I realized is that for many years, I was driven by fear, you know, like, I was driven by, I don't want something bad to happen. And so I will let his blood sugar went a little bit high. Or I will like say, Oh, yeah, that's okay. Like, you know, and just maybe under dose something, just just to be like, okay, like, at least he won't go low, or at least he won't be super sky high overnight, you know, just like finding that middle ground where I was letting him run a lot higher than I should have. And now like, you know, I'm looking at that and going, that's not the Y, the Y is not fear, the Y is not fear. If I focus on the fear, then I'm always going to keep him in that higher range. And then we're going to start looking at down the road, we're going to look at the health problems that are associated with that. Why don't I focus on let's avoid that, let's put you let's make the why about your quality of life later in life.

Scott Benner 12:33
Yeah, and I was just say that I am. I'm always really, um, there's, there's not a lot of opportunities for me to feel pleased with myself around the diabetes stuff, but when, you know, there's days have gone by like this, you know, it's like softball seasons like in full swing. Now, so Arden's weekends are spent being active for six and eight hours a day. And she inevitably gets lower, you know, in the evenings after that. And when she goes to take in a bunch of food, not just as much Oh, actually hold on a second. People love this. I don't know why. But actually, I think I do know why. But Arden is texting about her. Her Bolus for lunch. So let's do that. We'll do it together for a second and then we'll get back. Yeah, it says she says it's lunchtime. I know she had gym today. She's going to eat in 15 minutes. She was bit she's been really steady at 96 for the past hour and 15 minutes, but I lost her signal about eight minutes ago. So I think she's still 96 bonus and asked her if she feels Okay, she'll say yes. Now while she's thinking half a bagel butter, that's what's in there today. yodels no yodels thing done, I don't know. 35 carbs. I actually looked at the carbs on because they look so amazingly sugar efic. And so then there was grapes, and broccoli and chips. So 30 540-550-6070 carbs, the drink doesn't have anything in it. And I put in some pretzels, like 75 carbs. So I'm gonna say

Unknown Speaker 14:09
I'm gonna say this is a nine unit situation. And a bazel Temp Basal. Here we go. Increase 50% for an hour.

Scott Benner 14:23
I always have to send the Temp Basal first. If I send the Bolus first. she'll throw the Bolus in and I go No, no Temp Basal shoes. Why wouldn't you say that before the finale, I have to wait for the balls to finish to put in. I can feel how irritated she is with me through the text message. Totally very, very careful to do that. Now the nine unit bolus, she's 96. So I don't want to give it all to her right now because we have 15 minutes ago. So let's extend it. And we'll do

Unknown Speaker 14:53
I don't know four units now. Seems like a lot. Let's do 30% now and the rest Over

Unknown Speaker 15:07
here we go. Let's see how it works while we're talking still probably. So yay, good.

Scott Benner 15:16
We say goodbye to her. And then I can get rid of this tax program on my computer right now. And then I should get her signal back from CGM. Okay, here we go. All right now here's the biggest problem me remembering what I was about to say to you when this happened. Hey, this ads for Omni pod but before I begin, there's been a big announcement today surrounding Omni pod. And for those of you who had effects, I know this has been a longtime issue for a lot of people. And I want to just let you know, Medicare Part D is now going to cover Omni pod. If you want to know more, I'll put a link in the show notes for it. But I know that is amazing news for those people who have been waiting very patiently and actually advocating on their own. So congratulations, everybody. Medicare Part D is now going to cover on the pod. Now, I'm running out of ad time. So if you want a tubeless insulin pump, which of course you do, on the pod offers a free, no obligation demo pod, something you can bring into your home, and just give a try to see if you're comfortable with it. If you are then you can move forward. If you're not comfortable, you don't have to do anything. And there's absolutely no obligation. So it's worth a try. You go to the link, Miami pod.com forward slash juicebox. You put in seriously the tiniest bit of information about yourself. And this demo pod is going to show up at your house and you can give it a whirl, see what you think. Not gonna push it too hard this week, I'm not gonna tell you a big story about how great Omnipod is, although I have stories, I could tell stories. But for this week, I thought knowing about the Medicare thing was such a big deal for most people, I want to use a little bit of this time for that. For everybody else, my on the pod.com forward slash juicebox. To find out more about the demo. There's also a link in your show notes. And don't forget, if you want to learn more about the Medicare announcement, go to Arden Stay calm. It's right there. I'll also put a link here in the show notes. So you'll remember that before the ad and before Arden's Bolus for lunch, I was about to say that there's very few opportunities for me to get really pleased with myself around diabetes. But here's one of them. This is the rest of that job. So she's getting low, you know, or low ish or sticking low. And when the difference between here's some food to help the low blood sugar comes up an actual meal at a weird time of day, like later at night or something like that. I'm pleased with myself when I have the nerve to Bolus for that food, even though she's been low. Yeah, like you know what I mean? Because that feels like not being afraid to me. Yeah. Now, every once in a while, that could backfire. And maybe you have to catch it again. But for the every once in a while where it backfires. And she still stays low. There, you're giving, you know, you're trading that for every other time where her blood sugar would have went up to 300 I would have been like, Oh, I was too afraid to do anything cuz she was low earlier. So I didn't and now look what happened. And now four hours later, I can get it back again. I just there are two times I feel completely empowered. It's that and you know, aren't you know, everyone gets low, like, like, frighteningly low once in a while. I would say it happens to a couple of times a year. But when it happens when she's like, you know, 40 and her blood sugar's falling, and she's eating, you know, the equivalency of everything in our kitchen. That fall stops and I see the Dexcom bend back up again. I never feel more in control than when I Bolus for the food when she's still 50 Yeah, and I'm just like, oh, wow, I this is how I know I'm doing it. Like, you know, because because I trust everything about what diabetes has taught me in the past. I've stopped the fall. I've you know, she's taken in an incredible amount of food that food is going to start bringing her blood sugar up, maybe I don't hit it carb for carbs, you know, unit for unit. But I'm going to give her most of the the Bolus that I know she needs for that food. And, and when that happens later, when you stop a crazy fall like that, and 45 minutes later, your blood sugar's 110. That feels amazing to me. Like oh, yeah. And I feel like I've done something. Which is that's my equivalency of like a roller coaster. You know, other people would have to go to Six Flags for that feeling. I get it right there.

Unknown Speaker 19:29
I am with you. I

Nickie 19:31
know I'm looking at our decks right now. And it's kind of cool because like I actually sent well a text he was at 74 and steady and I was like, you're not going to eat for a while. I'm like, why don't you go down to 15 grams and let's just see where you're at. And like, it has now come back up to 80 and steady so that's gonna take them right through to lunch. So it was perfect because it was it was going down. So it was like, you know, seven

Scott Benner 19:53
inches 74 you were falling because that because falling. If he's 13 then what's the way about 100 pounds one way or the other 90

Unknown Speaker 20:02
out of a peanut, he's 71.

Scott Benner 20:06
So he says 70 pounds. So you just need to 15 carbs, if he was steady at 74 would have pushed him higher. So you that's how you feel like you know, there were still a fall coming.

Nickie 20:15
Yeah, yep. Excellent. So awesome when you make those little tiny victories and it's like, I am so glad that he's not like, you know, it's just nice to see that 81 and steady. And then also, like, here's where I feel like I'm winning, too. I'm not panicking at 81 and steady, where I used to, I used to be like, Oh, my God, he could go low, he could go low. What if he goes low? You know, somebody's gonna walk them down to the nurse or, you know, we, I don't know, you know, just all those little things like now I just feel like this sense of calmness. I mean, it's been years. I mean, we have had, it's not like, we're brand new at this, you know, like, I mean, I it's taken me a long time to get to this place. And I think, when you have the right tools mean, we have the Omni pod, and we have the Dexcom. And we've had the Omni pod for several years, but we are new to the deck. And that's something we change doctors, and the doctor was just like, I'm like, Why do you not have that x? And we're kinda like, I don't know, you know,

Scott Benner 21:11
so no one said, I everything that I've learned about I learned about from somebody else at some point, you know, and you just one day, you're like, what somebody is using a glucose monitor? What's that? And then, you know, a little bit of googling later. And I said, oh, wow, we're getting this. Yeah. And and so well, you know, it's interesting is that you talked about walking around at 81. And feeling comfortable now. I am at 81. In my mind, I'm starting around like john travolta and Saturday Night Fever, right? You know, like, I'm like, well, we are killing this. I'm, I'm the I'm the big stepping foot guy on the keep on trucking. mudflaps from this, just like, look at how we are killing this. And could she get low? I mean, she got the Dexcom she started drifting down, we'll do something about it at once crazy at one is such a plus, you know, if you test it, it was probably like 90 anyway. And so you're just like, this is such an amazing feeling to lose the fear. And I'm gonna, I'm gonna tell you a story from last week, excuse me, that will, I think just magnify what it means to be without the fear completely. So this seems to happen. Like once a year Arden goes to school, and their technology at school just completely falls apart. So she walked in the building, I dropped her off. And I got home and her blood sugar was, I think I dropped her off in the morning. It was like she was a little over 100. And I didn't have any feeling to think that she would go higher, but we had, she'd eaten some food on the way out the door. And so I bought a sport. I was like this. I remember thinking this might be a little too much. But yeah, that's her. And so she goes into the building. And I have this like conscious thought like a half hour later, like, Oh, well, I'm not hearing anything from the Dexcom. This is great. Maybe we really did hit with this food. It's you know, she didn't go up over 130 or I would have heard, I wouldn't have expected her to get low. But I know if I did something wrong, I might have expected her to get to drift off. And so no beeping This is great everything. And then I just I start going about my business and I put my stuff down and I'm wearing my Apple Watch. So I figured you know, I don't need my phone right on me. But I didn't realize I i muted my Apple Watch. And so I saw I didn't get any. So about an hour into it. I was like, wow, I must have really just perfectly gotten that bolus, like you know, and then I was like, maybe I didn't and let me look. And so I looked and I there was no signal she I did not see. I couldn't see her next calm at all. And so I was getting the no signal thing after a half an hour but I didn't feel it on my watch. And so now I text her and the text doesn't go through. And oh my gosh, she's in like she's in like the Bermuda Triangle of of cell signals and Wi Fi right now something had to happen at the school, but I'm still just like, Okay, let me let it ride a little bit. I'm not going to go crazy. I'm not going to be the guy who calls the office like I can't reach my daughter, so I'm just like, it's gonna be fine. She'll notice if she gets low. You know, Baba, she still got her her. Their CGM like I don't have it right? Yeah, even though she's 12 and if I'm being 100% honest, I think that thing could actually scream at her in English you're about to die and she might literally just ignore it.

She's like wow, why is my phone calling me I'm gonna die. I guess I could look but probably not. And yeah, so like I tried to text I can't get texts to go through a little while later I go to my fallback idea. I'll call her sometimes when you it's crazy as it sounds it seems like when you send a different type of signal through the through the system sometimes it could pick up one and not the other phone call goes right to voicemail like huh, so I send that find your iPhone signal like this thing is the Superman of all signals. This one bursts through everything. That didn't work. But I also had a breakfast with a friend so I'd been driving to to this restaurant and go out to eat three times a year. I've a very exciting life. And so and so I was like I wasn't gonna cancel with my friend. You Because I couldn't get through and we're sitting there and I'm trying to tax everything. And finally I said to her, I'm like, Look, I can't wait any longer if she's low. It's going to start happening right now. So I called the school and the front office, voicemail picked up and I was like, Wait, does this happen? You know, like so now. So now I have to call the nurse's office because I know she'll pick up but if you listen to the podcast, you know, Arden doesn't go to the nurse doesn't know the nurse. The nurse has no goings on, you know, there's no interaction at all with Arden's blood sugar. And so I was like, hey, and I said, Hi. I said, Here's what's happened. I said, the cell service is down in the building. And it seems like the Wi Fi is not working. I need you to get Arden and bring her up because I have no idea what her blood sugar is. And she could be allowed. And he and she was Oh sure, sure. She has her come up. And my phone rings a couple minutes later. Arden is here. We've tested her blood sugar. She's 56. And I was like, Okay, I said, um, I see her on the phone. But what do you want me to do? I'm like, I'd like you to put her on the phone. And so, like I said, How you feel? And she goes, I'm alright. I was like, Okay, I said drink a juice. Wait, wait five minutes and go back to class. And she's like, okay, and I can hear her saying to the woman, my dad's just gonna, we're just gonna drink this juice and she's so mature. While she's saying it to her. It wasn't like a child echoing or father or anything like she she knew that the phone call was just art and knew the phone call was just to stop the nurse like from being like, Oh my God. And so Arden's like a very calmly Arden goes, Hey, I'm just gonna drink this juice. And I'll head back to class in a couple of minutes. And give me the phone and I hear the Hi, I'm gonna keep hearing retest in 15 minutes. I was like, Listen, you could do that if you want. You really don't need to. She's not 56 and falling. She's 56. And I thought this juice is gonna bang her right back up to 85. And she was but she's going to gym next. And I was like, yeah, it'll be fine. And she's, she's like, No, I'm gonna keep her. I'm like I said, you know, you should do whatever you want. Thank you very much for help. I was very polite and everything. And she's like, yeah, so a few minutes later, not 15 minutes later, Arden's texting me, Hey, I rebooted my phone. It's working again. I was like, Okay, great. And she's like, um, she's like, I want to get out of here. And her blood sugar was like, 64 diagnol up, she's like, she won't let me leave. And I said, just I texted her, I was like, just make her happy and say a couple more minutes. And she was like, okay, okay. And then she laughed, and she went off the gym, went to gym, and then we Pre-Bolus for lunch, and she was off on our way. But I'm gonna tell you that if that happened to me years ago, I would like at the school at the front door like banging on the front door yelling my daughter's dying in there. And and so the, the process that we've gone through that we've talked about in the podcast of you know, figuring out that you know, the fear was the thing that was holding us back from her going to school and or overnight sleep overs and all this stuff. I also eliminated the fear that I just there I mean, 56 is low. I'm not telling you it's not low. But I'm I wouldn't panic at 56 not I mean, 56 and falling I would have been a little more like short with my words. I've been like, Look, you need to have a drink of juice. Let's shut her bazel off let's I would have had more to do. But at 56 and stabilize like she's going to drink that juice. Her blood sugar's go back up in a couple minutes. And huh. But if you could have heard the nurse who lives in a different world with the other kids who have diabetes there, she was like, Well, you know, I'll put the process into place. It was almost like watching like a bad show about the about the White House. You know, there were on lockdown. Everyone gets to the Situation Room, the lights in the room go dim, you know, like, I was like, Oh, it's just let her drink the juice and just make sure she puts another one back in her bag. Right. And that was that was sort of it. But it sounds like you're closer to that then than not, but you're at this for eight years. How long did you spend afraid and when do you start coming out of it?

What happens when perhaps the most impactful piece of diabetes technology in the last decade has a long boring name like continuous glucose monitor? Well, what happens is it's confusing a little bit. That's why I try every week to tell you about Dexcom. So that one day you won't just think of a tissue and a Kleenex is the same thing. Because Kleenex is a brand name. A tissue is a description of that brand name. A CGM is the description Dexcom is the brand name. Now, none of that helps take away the fact that continuous glucose monitor is a very very unsexy grouping of words. But here is what is exciting. Everything you've heard today on this podcast wrapped around diabetes, everything you've heard for 143 episodes about it. The idea that you can see the doctor erection of your child's blood sugar of your blood sugar, not just the direction it's going, but the speed, it's going in that direction. And what's the number? Am I 90 diagonal up? Am I 90 and stable? Am I 90 and falling fast? Well, there's a big difference between those three things. A big difference, how about when we're bolusing for a meal, and you can see stability, like we're talking about today with Arden's lunch, when you can see that stability, you can feel comfortable, this bolus was right, my Pre-Bolus was right. My goodness, this is something you want to have this amazing information is available remotely because of the Dexcom share and follow ups are available for Android. And for Apple phones. Just imagine someone being able to see your blood sugar or you being able to see your child's blood sugar in real time, not just what the number is, but which direction it's moving, and how fast it's getting there. Please go to dexcom.com forward slash juicebox. To learn more, you will not be sorry.

Nickie 30:56
You know, I was probably driven by fear for the first I would say like probably four to five years, I would maybe say and you know, I think some of that had to do with just like, I think I was a little nervous to reach out for support. There were things that you know, when when you don't have a circle of support. And I don't mean that in like I have an awesome, you know, network of friends and family and all that but it's like people like you people like you know, I'm in Type One Diabetes moms group on Facebook, you know, things like that just help you have those conversations, but you know, even your friends with the most well intentions, you know, just coming up to you and asking you and like saying no explain it to me, and you explain it to them. And they're just like, you know, you can tell it's going over their head, it would have gone over my head, you know, like, it's that kind of stuff and getting the support and just like being around other people that have it one of Will's really good friends has it, which is crazy. And so his mom, like just having that little network has gotten me out of that fear. And you know, just

Scott Benner 32:05
to information because the difference between the difference between support from well meaning people and support from somebody who understands exactly what's going on and can offer some thoughtful commentary back again. That's the that's that's the support you're talking about is that being around people are living the same life you

Nickie 32:20
are. Exactly And like we went to the ADA gala, my husband actually is the wine company that he works for did something and he got tickets to the ADA Gala. And I'm like well absolutely let's go and I remember they showed this whole thing on camp needlepoint which is a diva camp needlepoint.

Scott Benner 32:40
I'm sure the camps all have different names. The one that we just did in the podcast last week, which by the time yours goes up will be months ago but is the one that's closer to me. It's the Jaya.

Nickie 32:51
Okay. Yeah, and so like locally around here and I know they have a few in this in a few of the other states around here but um, so camp needlepoint, they did the whole presentation and I was like, there is no freakin way. I will send my kid to camp like Sorry, no.

Scott Benner 33:08
Explaining the camp and you Oh, you're hearing so I locked him in a garbage truck? And then it crushes him. Is that what you just said? Because it feels like that's what you just said. I'm not. Yeah, I'm not. I'm not you're not killing him for your camp. That's what this is. You murderers and

Nickie 33:25
oh my god. Totally. I mean, you're they're showing me videos of like the kid swimming and doing all these great things. And I'm like, Oh, hell no, no, no.

Scott Benner 33:33
Happy for the video. I see what's going on here.

Nickie 33:37
It's just reaching me out the idea of that freaked me out and then I remember just kind of coming out of that thinking. And we'd gone to the gala. I think it was like three years that we went to that Gala. And finally, I was like, Okay, you know what, like, he needs to go like he needs to go and I've heard from other people like in that moms group camp needle points. Amazing. And then other people we met in the community who like said oh, this will go to camp needlepoint. And I'm like, No, you know,

Scott Benner 34:08
children the way I do obviously, and because it is scary. That's the whole concept of it is even when they're like No Don't worry, they'll be watched with people who have diabetes and everyone by the way this camps been operating for you know, dozens of years and no one's ever bothered on you're just like that. Do you can't fool me, right?

Nickie 34:28
Oh, yeah, it took me so long and so well has gone now for three years. And he is going to go again this next year. And it's like for me the camp and like getting the Dexcom I think well in the Omni pod with along the way. You know, when you are using injections like that is like you're shooting arrows in the dark and it's really hard. I don't know how we ever got through those years and those days and those nights because, like, I can't believe what we have in front of us today with the decks and knee pad like that these are lifesavers. And I, I just, I'm, I'm so grateful that we have this technology that can help us move forward. So we're not constantly in the dark anymore.

Scott Benner 35:14
Yeah, it's it's a, I mean, I've said it a bazillion times, but I genuinely don't know how to accomplish most of the things I do without it. Although I am going to try again. Pretty soon I'm going to set up another podcast with a person who is doing injections and they're doing amazing. And I want them to explain to me how because we actually have a, there's an episode that's recorded that's not up yet. Where we tried that I got on with a mom who does injections. And I said, Okay, so, you know, let's, you know, can I can we have you on and you can tell us how you're doing great with injections. And the first thing she said is we're not doing great. I was like, Ah, this isn't gonna go the way that I was hoping. So we talked about why it's not going right. You know, they still have a really good conversation. But I've got this gentleman who's like, no, we're doing it. And so I'm gonna try again to have that conversation because I can't in my mind, I can't figure it out. So I couldn't for a very long time, and I can't now and now maybe I'm, I don't want to say I'm spoiled. But maybe I am spoiled, like to some degree. You know, we, you know, it's been 20 literally exactly 20 minutes since Arden did her her um Pre-Bolus. So she's been in the lunchroom now for five minutes or blood sugar's 107. Wow, you know what I mean, and now, she's eating now. And just just as the food starts to hit, or the insulin is gonna come down, I'm even like, looking at her now. Like, there's part of me that wants to cancel the extended bolus, right? Put all of it in the balance of what it didn't go in, goes in there. But I'm gonna wait a couple more minutes, because I think this could still work out like there's part of me is like, I should have maybe broke out the balance of The Expendables or a half an hour, not an hour. Right. But I did that because she's got a lot of vegetables in her meal and a heavier bread. And I think those things are going to take longer to start affecting her. You know what I mean? But it's in my mind, I'm like, but what if she eats the yodel? First. That is the entire thought process right now, by the way about whether or not my extended bolus is at the right distance? It's like if she grabs the broccoli and the end the the grapes and the bagel first, then my one hours perfect. And if she dies into the yodel first I'm completely,

Unknown Speaker 37:26
totally, totally

Nickie 37:28
oh my gosh, isn't it just it's like, you're always kind of crap shooting in so many ways, you know, with this and, but got to be able to have the the structure and like just seeing the numbers and having you're just watching the lines and being able to have that in front of you makes such a huge difference mean that even if you were on injections, and you were doing this, I mean, I don't know what I like about Downie pod two is the fact that we can play around with those temp basals and extended boluses. And, you know, really take those deep dive. And I remember when we first got the Omni pod, I was like, Whoa, that's way too much information, you know, I essentially for quite a while use it, just as I would have injections, you know, and just it was like an insulin delivery system, you know. And now it's like, as you move into move out of the fear and into just that sense of control, and then just knowing that you know what, I've got this Dexcom backing me up, like I can look at this in real time at every second, I can fix my mistake,

Scott Benner 38:27
when you talked about the 74 blood sugar earlier that was falling, and it needed the 15 grams. If that 74 was very steady, and there was no insulin going on. You probably could have tried and I imagine you would have like Temp Basal, maybe shutter Basal labels off for a half an hour and see if you can drift that way. I that goes back forever. To me when we were doing injections when Arden was a baby and I'd have those conscious thoughts like I wish there was just a button I could push to stop her, her slow acting insulin from workings for a while. You right? And there is a button now. So you know,

Nickie 39:01
isn't that cool? I know that it terrifies me now to think back to using lantis. Because you you lose that ability to pull that back. And it's like once that is in that is in

Scott Benner 39:12
it does what it does. And and and and you don't really know. You know, I guess I guess I know I'm not a doctor, obviously, I'm sure the people who make slow acting insulins would not be thrilled, but I don't think that it works steadily for 24 hours the way they say it does. So you know and so there's times where it works. It's less, you know, less effective, more effective. You know, there's a lot of different issues and you don't know it's all guessing, you know, at least with this you can say I'm going to do a Temp Basal off for like we did it the other night. I bolused Arden's like ardmona ice cream. So I went out and she's like, I want you to go to this place and get ice cream and I was like, Alright, she had a long weekend and she did a really good job. I was like okay, I'll go. So I went out. I got ice cream. brought it back. She's like, I want Carmel whipped cream. It's like, okay, so I gave it to her. I texted her when I was about five minutes from so I'm like, boom, you know, this is what I want you to ball. She boluses it comes home starts eating the ice cream. She's about halfway through it. And she goes, I shouldn't have got the whipped cream. It melted on the ride back. This is disgusting. And she hands it to me.

You know, just like, Okay, hold on, does this let me breathe for a second. And and I didn't make a big deal out of it. I was like, Yeah, sure. It's disgusting when the whipped cream melts. And I was like, Yeah, he hands it to me. And I'm like, Okay, well shut your bazel off for an hour. So I started doing Basal that time. And it's 1.1. I gave her you know, three units for the ice cream. It wasn't a very big one. But you know, she did eat some of it. So I'm like, maybe I can get lucky here and trade bazel for Bolus and let's see. And it worked out fine. It worked out so fine. You know, it just there was no issue around that at all. You know, with the, you know, injections, I would have just been like, well, you better figure out something else to eat. Because we're not stopping now. Now we got to feed the insulin, you know that you've got that you that, you know, that was further on board?

Nickie 41:15
Yeah. Oh, my gosh, I

Unknown Speaker 41:17
know. It was great.

Nickie 41:19
It is it's crazy. And I remember so when, when we were first diagnosed. So we were on a trip visiting my husband's parents who lived in California. And so we were just we noticed some things going on with well, and I called my nurse back here. And she just said, I don't want to alarm you. But I think you need to go into the emergency room right now. And so I went through this

Unknown Speaker 41:40
statement, I don't want to alarm you. Please find emergency room, right.

Nickie 41:47
I know. And that was exactly what her words were word for word. I was like, okay, and this is like a woman that like saw me as a baby. And so she's known me my whole life. And she said that to me. And I was like, oh my god. Okay, so Cathy, serious, I gotta get going. So

Scott Benner 42:03
to get upset, but you're on fire. You might want to skip over the well wishes about hoping you're not gonna get upset. Just go right to the Hey, Japan,

Unknown Speaker 42:14
and get the house but I don't know why I find that amusing for some reason.

Nickie 42:20
is now you know what I mean? Like, back then it wasn't. Now when I got back then I was like, Are you freaking kidding me? You know, and just, it's, it's crazy. So yeah, totally. So we went into so we had our little boot camp, you know, that they basically put you through when they admit you into the hospital. And the way they did it in California was so different than Minnesota. And so, you know, and of course, I didn't learn that until we got back to Minnesota. But we Um, so in California, what they had us do, this was so crazy. So we had the lantis. And then we had humalog and humulin. And so we would have to mix those two, and we had like these certain time intervals that we had to give will influence and it didn't matter. Like it wasn't like with the food always like it was really bizarre. It was like, Okay, at this time at this time, and then every meal, it was like his meals were 45 carbs, they always had to be 45 carbs. And his snacks always had to be 15 carbs. And they had to be spaced out in these intervals. They were and it was

Scott Benner 43:20
eight years ago. They were teaching. They were still teaching this in California. Yeah, I still mean, I still meet people now, by the way that that are taught like this.

Nickie 43:29
Wow. Yeah. It's so archaic. Like, it's just like in mixing that kenalog and humulin. Like, I'm sorry, like, That is insane. When you're trying to do that as a new parent, like, starting with, like, having these needles that you've got to shoot into your child that you're still getting your brain around that you know, and then having to mix the insulin and if you accidentally mess up, you have to throw it away and start over. I mean, it's just like, it's,

Scott Benner 43:57
it's an odd thing, especially in the beginning because everything they teach you everything you need to know for diabetes, especially when it's coming through needles and everything. It feels like such a thing that's supposed to happen at a hospital. Like it's almost like if someone said hey, you know you're gonna get chemotherapy for your cancer. Here it is. Do it at home. Like Yeah, you figure it out. There's a couple of sheets of paper and then you watch a video on YouTube you're gonna get it like you know, like it just it seems like when you're being taught it you're just like no, that seems like something that happens at a hospital we live here now. We know this is you know, I know I live here and you'll give me the the Intel eat the food we'll all grow together in this hospital room because because that doesn't seem like something in person has to do at home and it really does strike you in the beginning like that and then you figure it out but but yeah, but they've got you all that plus mixing and and eating the interval eating with a five year old sounds maddening, actually, so Oh boy, cuz I'm assuming well wasn't always hungry.

Nickie 44:55
No, not at all, you know, and it was just like trying to You know, you feel so bad and you're like, dude, you got to eat this buddy, like, trying to talk him into it and, you know, help it letting him decide what to eat. I mean, we like wrapped our brain. And fortunately, we only had to do that for about like, I don't know, a few weeks, because we had to do that at home until we could get in with our doctor here and meet whoever our doctor was going to be, you know, and it was just kind of a weird transition to have that happen on the town and then come here and then meet a new doctor. And then she set us up with this new program, which is so much easier with just, you know, the hemoglobin it and the lantis. That made life a little bit easier. And I do get it, like, I think, you know, when I think about Atlantis, and I think about, you know, like, we are really involved parents, you know, like, we want to do this, we are so committed to helping our kids be healthy and strong. And there are kids out there that don't have parents in their life like us. And so I can see where Atlantis and things like that still play such a huge and strong role in you know, medical community. But I think when you are ready to take a deep dive like this, like, that's kind of obsolete in our world, you know what I mean?

Scott Benner 46:04
It's, it's, um, it's one of the things that I hope the podcast is doing for somebody and I don't know, if it reaches people who aren't motivated, you know, to the to that extra level, like you're talking about, but I want I so badly want people to understand that it's so much less effort to keep someone's blood sugar at 100 than it is to fight with someone's blood sugar hits 250, and then it's 40. And then it's 300, again, like that, that takes a lot of effort. You know, totally you figure it out in the beginning. And even without the technology, you can figure out enough that it's not bouncing around like that with the technology, if you're if you're fortunate enough to be able to to get it, it just, it's so much simpler to live like this. Like then than that. I know that sounds weird. If you're, if you're not at it yet, if you're struggling to get to it, then it that that sounds like you want to come here and hit me with a board probably but now we are now we are literally over 31 minutes past Ardennes Pre-Bolus and our blood sugar's 100. And it's just starting to if you look on the very edge of the three hour line on our Dexcom, it's heading down. And so now we're gonna see it, I'm hoping it goes down another 15 points before it levels back out again. And that was the goal, but but I don't have to pay attention to it. I'm looking at it now. So you and I can talk about it. If you and I weren't talking, I wouldn't be looking, I wouldn't have my phone out. You didn't mean like it, but if her blood sugar was, you know, 200 going into lunch, and now I'm watching it climb up to 300 while she's eating, then I'd be fixated on it, I'd be thinking about Do I have to bring her home? Does she have to drink water? Do I have to change your insulin pump? Like what is instead there's there's nothing to think about it said 100. You know, it's as counterintuitive as it sounds, it is easier to keep someone steady at near an optimal blood sugar than it is to fight with it going all over the place. Now the of course the rub is to get to that spot. But

Nickie 48:03
Yep, and it's liberating when you can get there because like, just holding on to that fear and going, Oh, I'll just let them run a little bit high. You know, like, that's always kind of my was my go to like office a little bit high, that's okay, you know, then if he's active or, you know, then it's okay, it's okay. And I would just sort of talk myself into it being okay. But then it was always these fights and sleepless nights, you know, meaning fighting the blood sugar, and sleepless nights for me, you know, he flipped through it all, which is great. Like, I'm so glad he does, and that I can be there for all of this, because this is the learning curve. And then when I send him out into the world, you know, like, those are all you know, the things that kind of go through my mind, like how he's going to do this without me and blah, blah, blah, blah, blah. But you know what, I'm making myself too important. Like, he is going to do great with this. And it's it's so you're so right, it is so much easier. Like we've had a couple really good days lately. And they are so easy. I mean, it's just like you just, oh my gosh, it's like 10 times easier

Scott Benner 49:03
here. Well, here's where I think the you know, cuz we never really talked about this. But if I extrapolate out that you know, I always think about the, the I guess the speed bumps on the way to what you were talking about earlier, like right so I first have to successfully translate everything that I've learned into my daughter without making it easy, right? That's wrong. Then you have to get past this idea which is right now she has a caregiver there's someone she gets to think about her life and not about this too much. And she does but not not not like I do probably. Uh huh. How do you get that onto her without it burdening her and who gets you up at two o'clock in the morning because then there's this other thing right? Like if you told me I had to wake up at two o'clock in the morning for my health. I would sleep through it and die earlier. And but but if you told me I have to wake up at two o'clock in the morning for my kids health, then I can accomplish that. Right like and and When something goes wrong in the very beginning, I would take it as a defeat. But then I realized I can't think of it like this. If I do, I'm not helping her, I have to take it as information that I learned from. And so now even though the things that I see as as shortcomings in my decisions are not as big as they used to be impactful as our health like this morning is a great example. Like I woke up this morning at six o'clock Arden's terrible at getting out of bed and around, so she's trying to figure out how to do it. So she's setting up these multiple alarms on our phone with these have noxious alarms that are going off earlier than she needs to get up. My wife and I are like, Oh my god, stop. But I'm like, you have to let her do it. Like she's trying to teach yourself how to hear it. You know what I mean? So let her do it. Since she's getting you know, she but I wake up for her alarm blaring through the house that apparently no one hears but me and and Kelly and her blood sugar's 128. And it's been there since four o'clock, and I have her high threshold set at 130. So it never alarmed in my mind that 128 felt like I was I wasn't upset, but I wished it wasn't there. You know, to me, like that felt high to me. Yeah. And so as I walked into a room, because she wasn't up yet to give her this insulin. It started the diagonal up. And I was like, Oh, yeah, see, now she's waking up and our bodies kind of kicking in and everything. And it went to 140. Before I got it back down, and I look at it here. It did 140. And then by eight o'clock, which was two hours later, we had it back down again. And I couldn't be too overly aggressive with it, because I had to walk into the Pre-Bolus for, for I could have been more aggressive as she was home and she was going to school as what I'm saying. So she was 140 for two hours. Now. I can get into a time machine back when I would have thought that that was me just you know, at the pinnacle of diabetes success, and and and yet now it's like it weighed on me for a couple minutes this morning. Like oh, okay, and then I and then I just was like, that's when I started thinking like, I might move or high threshold to 120. Soon, like, because what I'm learning more than anything is that wherever I set those lines, we seem to stay in between them.

Unknown Speaker 52:18
That is such a good point. Yes.

Scott Benner 52:21
Because Because you react, right, because you're and people like oh, you must be reacting constantly. But I figured out how to stay pretty stable. So. So no, not really like I mean, I maybe I would like to know what else 129 130. And as soon as I feel like we can accomplish that then I'm going to get to that. And by the way she is now 36 minutes after Pre-Bolus she's 95 is going well. I'm feeling pretty good about this one by the way,

Unknown Speaker 52:48
that victory and forget

Scott Benner 52:50
that like I'm hoping people here but I did with the extended bowl. Spread out a little bit and thought about the food. That's That's why I'm I get so many notes back there. People are say, hey, yeah, last week's podcast was great. But I really liked the way you talk through art and Bolus, like in real time. And I was like, Oh, okay. I was, I was just doing that because I was too lazy to stop working and keep going. But it turned out to be positive. So I was like,

Nickie 53:14
No, you should keep doing that. I would agree. I think that's really cool. Because Yeah, it's like, okay, you you do you need to talk this stuff through and like, give it some, okay, she's gonna do this. It's gonna do that. Okay, perfect, perfect. You know, you can just really, no one else understands those conversations. And so when you have those, like, hear other people having those you're like, yeah, okay, totally. Dude, I would do the same thing.

Scott Benner 53:36
I mean, what it would sound like to someone who didn't have diabetes, like all these odd buzz words and phrases and everything. And you'd be like, if you walk into a doctor's appointment for somebody who was sick with something you'd never heard of before, and they're just like, I don't understand anything they're saying to me, but it makes so much sense. Oh, if you're totally Yeah.

Nickie 53:56
Go ahead. Sorry. Oh, I'm sorry. I was on the phone. It was so funny. I was talking to mark and my husband and I was in target. And I was like, so frustrated will has been high all day. And I'd like said that loud. And I'm like, Oh my god, that sounds so ridiculous to other people. Like they're like, Oh, my God, who was high at her house, like what are they smoking? You know, and

Scott Benner 54:17
so yeah, and it's such a shame. That's why she's at Target. And I love that. I I've thought like six times at a different point in American history. Your husband would be a bootlegger. It's so great. Oh, totally.

Unknown Speaker 54:31
Yeah, sure.

Scott Benner 54:35
That would be so much more exciting. I think that selling wine legally for some

Nickie 54:40
Oh Italy I know you should see our house we in you know he just had to convince me to get another wine fridge and like we have to have these dual zone wine fridges that one for the red one for the white like it's just it's you know, I can't complain to be honest. It's pretty nice.

Scott Benner 54:56
The bills are getting paid. I don't see a problem with any of this. And and obviously You have Dexcom? So you have is that through your insurance? By the way? Are you paying cash?

Nickie 55:04
Yeah. So we we do have it, we have to pay like our we have to pay? Well, I believe we get some sort of benefit through it, we have to pay with a certain like those HSA money or whatever. And then we have like our deductible sorry that we Yeah, you know it and then once that's not we're, we're done.

Scott Benner 55:26
Yeah, I feel very fortunate every time I just ordered insulin pumps recently. And, you know, I think I paid, I don't know, $120 for them or something like that. So that's it that always feels very fortunate when that's happening, because, and that is the other side of it, like you're talking about, about what do you say to your kids about how to pass this off to them at the same time? Geez, like, what do you bake once they're not insurable by you anymore? You know, and I was in my early 20s, I wanted to have health insurance when I switched jobs, but it wasn't the most important thing that happened or didn't happen to me. You know, it's it's a different. It's just a completely different situation. You know, it's, oh, yeah. So I it's hard to think about and, and it's hard to, it's, I don't know, it's just hard to, you don't want to think too far ahead with IBD. Sometimes, I think sometimes I think it's good to just today and tomorrow. And that's enough, you know, try not, try not to wonder about 10 years from now, because things will change anyway. And you'll think I worried about that for no reason or whatever. or, or, you know, oh, no,

Nickie 56:33
no, I hear ya. It's like, I just stopped myself. And, you know, it's funny, just like with my husband being in like the wine industry and stuff, honestly, like when I was sitting in the waiting room to be admitted into with for him to be admitted. First of all, I couldn't get a hold of my husband. So sitting there by myself with will and he's just five and playing. And I'm just sitting there. And I remember just the stream of thoughts that went through my head and they were so like, far out like to the future like they nothing present was coming into my mind. And I remember thinking silly things like, What if he wants to drink alcohol? Like, what if he you know, just all those things that like, I'm like, how am I going to do this? How am I going to do this? And you just you It's so bizarre how you can really get yourself caught up in that wheel of thoughts. It's like you're on a hamster wheel of things you can't do anything about anyway. So, you know, it's like, turn around and just

Scott Benner 57:23
say, your girlfriend when you're 15. And you stop your brain from going What if this would have happened? And what if that like, I remember walking out of the carb counting class, like the third day and Arden's diagnosis, the hospital, and my wife just looks at me and she blurts out, is she gonna be able to have a baby and she starts crying. And I was like, I don't know. I was like, I have no idea. I'm sure yes, like, like, but I don't know. And God, you're crying like you're Irish, you never cry. And that poking. I didn't even think her tear ducts worked. I was like, wait, what's going on? around your heart began to melt. I'm not sure. I hope the Irish are listening or not insulted. But my wife is very stuck. And so like, you know, like, just, I don't know, she was crying. I was like, Oh, my God, if you're crying, we must be in trouble. And I was taking it. At that moment coming out of the other card counting class. It hit me like a ton of bricks. There was, I believe eight or nine families around this giant conference table. They had all been diagnosed in the last couple of days at this hospital. Uh huh. And we were all in this card counting class together. And as I walked out of the room, it hit me. If there were nine families, there were eight women sitting around the table and chairs with eight men standing behind them listening. And I was sitting in the chair with my wife standing behind me because I'm a stay at home dad. And it was like, oh, it like I put the two and two together. I'm like, the people sitting down. They were the people are gonna get hung on hung with doing this when they get home like, right, like, this is me. And then we tried to go back and count carbs in the room with the nurse and give it and I was there. There was this math, you know, it's some formula and I started doing it. I lost my ability to do simple math. I couldn't do fractions anymore. Like everything just left my head. Oh, yeah. And, and I, I broke down and started crying trying to draw up the syringe. And the point where my wife looked at the nurse, like and saved me and she's like, you should probably just come back later. Like, he needs a minute. And I was like, Yeah, I was like, I was such an ugly crier, too. And I was just like, I'm like, it's gonna be fine. And Kelly's like, I don't think so. And she's like, let's get this woman out of here. So she can't tell the story later. I'm like, you know, I'm like completely falling apart. And Kelly's like, what's wrong? I'm like, I can't remember how to do anything. Yeah, you know, and I can't get out the math, even though I know it's simple. Not in a sense, and I just said, I feel like I'm gonna kill her. Oh, yeah. You know, and that's how that's how all that Felt and I was just like woof. I remember when we got home because we were on vacation to when Arden was diagnosed because that's what happens when you're diagnosed with a vacation. And we got home and my wife said, What would help? And I was like, well, you're gonna go back to work in a couple of days, like clean the house. Like, like, do everything that I'm supposed to do everything and I'll just think about this. Uh huh. That was the beginning of a very long and sad couple of years of me and Arden, you know, hunker down while I'm staring her in the face going. I wonder if she's high or low right now? Yeah, you know, like, like, for two years, that that went into that window more years, like shooting art and getting didn't get a CGM until I think she was five or six, like it was a while ago. But we've been at it for a very long time with our little freestyle meter and the needles. So

Nickie 1:00:55
that's what we did do and you know, to kind of like, rub salt in the wound or whatever, we also ended up getting diagnosed with celiac. And so, you know, it's like, We're so lucky, man. It's just keep on coming. So, yeah, that was also you know, like, when, when you're faced with this, and then you're already just like, you know, kind of, I mean, not we didn't really put restrictions around any food to be honest. I mean, we're, we're pretty healthy. We eat really healthy around here, we focus on you know, meals and snacks. Being the trifecta is what we call it. Like, it has to be a fat, a carb and a protein, like a

Unknown Speaker 1:01:30
drinking wine, but a drink.

Unknown Speaker 1:01:35
While we want

Scott Benner 1:01:37
drunk, it's the business.

Unknown Speaker 1:01:40
We have to do marking?

Nickie 1:01:44
Oh, my gosh, totally. Yeah. So you know, it was like, it just was kind of that was like another layer to it. And if you were to ask, Well, if you were to sit down and just say like, Well, you know, what, how, how are things going with diabetes? And celiac, he would, he would tell you like, he doesn't mind diabetes. He doesn't mind diabetes. He hates celiac. Like that, to him is just such a worst life sentence. And I'm just like, wow, you know, that's, that's pretty eye opening to me. And then, at the same time, like, we've also had some complications. So it's funny, you asked me like, you know, he's probably about 100 pounds, or whatever. It's like, he also is experiencing some growth issues from celiac disease. So we've been having, you know, bone age, scans done of his hand since he was really little. And so he was diagnosed with celiac after type one diabetes. And so we've had the bone age scans done. And he's his bone age is actually 10 years old. And for a 10 year old, it's even on the small end of things. So they're looking right now into whether he's a candidate for growth hormone. And

Scott Benner 1:02:50
so is that attached to the see, like in the diabetes, because I know that I know, people gone through this with their kids. And it's, it's another indicator, it's a different kind of endocrine issue. I don't know that is is, are they related? Has anyone said?

Nickie 1:03:05
Yeah, so his endocrinologist believes that has to do with the celiac disease, so not diabetes, you know, his blood sugar's been, you know, not way Wakata control or anything like that, like, so it shouldn't have anything to do with that. So according to what he says, and he's just looking at that he had a test, I believe it was a pituitary test where he was in the hospital for about six hours. And they had to do this. To give him some medication, and then watch what it did was I don't, I can't remember all the details right now. But that came back normal, like he does excrete gorz growth hormone, but something is off with it. And so, you know, I think sometimes when we have wonky numbers and things like that, like sometimes I wonder if it has to do with all of that they all sort of, you know, they're it's like a symphony, you know, all of it and so

Scott Benner 1:03:57
against you at the same time.

Nickie 1:03:59
Yeah. Yeah. So we're kind of in the process of waiting to find out if he's a candidate for growth hormone,

Scott Benner 1:04:04
what would make him a candidate, you know?

Nickie 1:04:07
Yeah. So basically, they right now they look at his growth chart. And he has kind of flatlined, and he's done this almost every year of his life, like, he'll grow a little bit, and then he flatlines. And so they take, and I don't know, all of the details, like, they look at the way that the curve, you know, how do you know when you go in for your appointment, they show you like, here's how he's tracking, or here's how she's tracking, you know, among the averages and whatnot. And there's a z score that they look at, and I believe what that has to do with is like, is like velocity or it's, it's some calculation that they make. And so the z score, I apologize, I don't know all the details. But you know, this I walked away with, like, what do I need to know from this? You know, what do I need to understand and the big thing was, is that the score needs to be a 2.2. And his was a 2.27. So he's like, you know, The doctor said he will have to basically like petition to get that approved like it will be he said, I'm guessing that they will say no at first and then they will probably say yes after we continue to try to push it through because his according to like their growth skill and everything now, if he if we did nothing, he would probably reach about five foot six. But his genetic potential is somewhere around five, nine or 510. So, you know, so that's that he said that what they argue against is that it they will look at that as cosmetic. Instead of you know, and I'm like, really, that's just like crazy, because this kid,

Scott Benner 1:05:42
I need to get a bolt from the top of the cabinet that's not cosmetic. Say, listen, one day, my son will starve to death. Without this. You're gonna get a bowl. And so please, you can make trust me the doctor, it sounds to me like what your doctor saying is I know how to get this through. So good for you. I just, you know, it's interest and my son would kill to for growth hormone.

Unknown Speaker 1:06:05
I know, right?

Nickie 1:06:08
I would I'm five to so tall, he just

Scott Benner 1:06:11
wants to be taller. And and and so he would, you know, he would I'm assuming he would take the life of another human being for another inch of height, I think. And he's a decent person. But I think that's how much it means though. You know, it's just it's really interesting. I'm five, nine, and I feel it's funny. Around most people, I feel taller. I get around someone who's taller than me. It is really obvious that I'm not tall. You know what I mean? Like, it's, as you meet a guy who's six to him, like, Oh, I'm like his child. He looks at me like, like, I'm like, I'm a small person that he met at the park. And I hate to bring you back to my parents now. You know, but when I meet a guy who's even five, eight, or I stand next to a woman who's my, you know, my wife is five, nine? Uh huh. Sometimes I stand next to a woman who's like five, three. And I think, why did I not do this? I did not try harder to find a woman who I stand next to. And I feel really super tall. And Joking aside. It doesn't help my wife to feel feminine to be standing next to a guy who when she throws heels on is three inches, three inches taller than like, so I was like, I could have made everyone much happier by trying to date shorter women. And so I do some consider that, but not as That's hilarious. Please, you don't mean like there's exams, I'll have a conversation with a couple of moms and I walk away and I realize I feel better about myself. I know, that's ridiculous, right? But just because women who you haven't been married for 20 years actually seem to care what you're saying. But because, like it's, it's the height thing. And so it's more important than as a very long way of saying it's more important than just how I look, you know, like, there's, I can tell you, for sure. It's, it's important to how you feel about yourself, too. You know,

Nickie 1:08:01
I would so wholeheartedly agree. And I think especially for guys, I mean, girls, you know, I feel sometimes like I look like I feel like I do sort of get treated like a child at times. I'm kind of like really, like, you know, people don't always take me as serious. Thank goodness, I have a large personality and it ends up working out. Okay. But, um, no, it but it is it's very,

Unknown Speaker 1:08:26
something to overcome the Wow, genuine, you're always

Nickie 1:08:30
you're always overcoming it. And one of my really, really close friends. It's so funny. She's a six foot tall woman. And here I am five, two, and we walk around together and like, we feel like we have so much in common because, you know, it's like that the opposites like she gets treated differently. Like she was always like, Oh, you know, oh, you must play basketball, you must play volleyball. And she's like, actually, no, I don't you know, I play tennis. And that's what I want to do. You know, it's the assumptions and the weird, you know, things that you get and same thing with me people put their rest their head on my on my head or rest their elbow on my head. You know, that's the way people are they pick me up and like, No, they don't do it anymore. I'm 41. But you

Scott Benner 1:09:11
have no control over what you do. I'm just coming at you. Look how adorable you are. That's, listen, this is I can tell you this, it's going to be a surprise. But your episode will happen after this. So it doesn't matter if we talk about it now. But tomorrow, I'm interviewing the actor Derek feller from the show, baby daddy. He has type one diabetes, but he's also slightly over 65. And as I look at what I'm going to talk to him about my notes, all I want to say to him is how cool is it to be 65 like that's, that's all I want to ask him. You're like, I can't get past any of the other things on my notes. I just keep looking and going. At one point I thought, Oh my God, he's eight inches taller than I am. Like he's like he's like two thirds of a newborn baby longer than me. Like Like, like, just you know, He must look at me and be like, Oh, are you okay? Like, how do you exist? I don't know, he probably doesn't know. Because he's handsome too. And oh my god,

Nickie 1:10:10
invite him over and see if he can help you paint trim or something around the house,

Scott Benner 1:10:14
like salting about his eye, can you get that? I just been looking at it. I don't feel like going to get the broom. Right. But But no, no, he's, um, I hope it's gonna be really interesting. He was diagnosed when he was two. So I think it's gonna be a conversation.

Nickie 1:10:30
So that will be awesome. That's so great.

Scott Benner 1:10:33
I just brought it up, because he's Six, five. And I just like I said, I have a handful of notes here in front of me. And I'm like, I'm gonna I know, when you listen to that episode, I guarantee I'm gonna launch into how tall are you five minutes? And because I'm for sure, because I'm fascinated by like, you know, it's not everybody gets to be that tall. Like, it's really, it's really kind of cool. So

Unknown Speaker 1:10:53
anyway, it is cool. It's really cool.

Scott Benner 1:10:56
I hope your son is approved for the, you know, for the therapy, because, you know, he sounds like it would be right for him, you know?

Nickie 1:11:04
For sure, for sure. Thank you for the thoughts. And yeah, I am really hoping that we can move down that road. And, you know, I like you said, I think psychologically, you know, I think there's just some self esteem that kind of gets gets tied up in that a little bit. And I wouldn't want you know, he's already has celiac. He already has type one diabetes, what's not given one more thing that's preventable. You know what I mean? Like, this is preventable. And he can, he can be more of an appetite guy, if we move forward with this, you know,

Scott Benner 1:11:34
therapy. And by the way, thank you, I don't even have to do an Omnipod or Dexcom ad because of how you talked about your technology today. So let's just say now if you want to learn more, go to buy on the pod.com forward slash juice box or dexcom.com. forward slash fuse box for more information. There we go. All done. And it's funny, too.

Unknown Speaker 1:11:56
It is really.

Scott Benner 1:11:59
I don't know if it's interesting, or if I find it exciting or not, but I don't ask people what they do to manage like, yeah, you can you know, vouch anybody who's been on the show vouches? I don't ask details about your life. I don't ask like we figure them out while we're talking. And so, but more people than not are like, Oh, I use it on the pod or I, you know, I we have DAX calm or something like that. I'm like, wow, it's it really is growing, you know, just in the community in general. Like, I think that's, I really do think that's fantastic. Because Dexcom would probably tell you that their biggest problem is, is that not enough people know what it is yet. Right? And so I just think it's exciting that that it's making its way, you know, I think it's so valuable, and we are gonna have to say goodbye, because we're over an hour, but do you want to get started and structure?

Unknown Speaker 1:12:44
I would say it is 111 99.

Unknown Speaker 1:12:48
Good guess nice. Very nice. I guess.

Scott Benner 1:12:52
I just really appreciate you coming on. And thank you so much. Do you have a blog? I didn't ask you anything about it. But it was in your email sign offers after your business.

Nickie 1:13:01
It probably was for my business. Yeah. So I just have a website that goes to my Fitness Studio. So we do have a blog on there, but we have a guest who writes it. So

Unknown Speaker 1:13:10
he's one of our members who writes it and so is your studio in Minnesota.

Nickie 1:13:14
It is Yep, it's in our little downtown area here in Rosemount.

Scott Benner 1:13:18
What's the dress?

Nickie 1:13:20
Um, it is Nikki and I ck IE Kerrigan ca ri ga n fitness.com. And our studio is called the warehouse.

Scott Benner 1:13:29
So that's your local. Check it out. That's great. Thank you again, Nikki. I really appreciate you coming on.

Nickie 1:13:35
Thank you so much for having me. I really appreciate it. Love your podcast.

Scott Benner 1:13:39
No, thanks. It was my pleasure. Thank you. Yes, you

Nickie 1:13:41
have an awesome day.

Scott Benner 1:13:42
You too. Wasn't Nikki fantastic. Yes, she was. I thought you were thinking that that's why I said it. I think we're thinking it together. Thanks to Dexcom and on the pod for sponsoring the podcast, my on the pod.com forward slash juice box and dexcom.com forward slash juice box to learn more. I also have a giveaway going on in the blog. Let me look real quick and see when it's over. I think I might know off the top of my head but it turns out that I don't on what I can tell you it's ardens de.com forward slash giveaways. And it runs till January 12. At midnight eastern time, she got about three more days. If you're downloading this the first couple days giving away some stuff. Go take a look on wednesday.com for slash giveaways. If when you get there this giveaway is over it's after the 12th of January. There's sometimes giveaways happening constantly all the time or throughout the year. You never know

---

Donate

The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

#143 Facebook Live Q&A ptII

Scott takes your questions...

I had some free time and so I jumped on to Facebook Live to try and answer as many questions as I could about type 1 diabetes. 

You can also listen to the Juicebox Podcast on: Apple Podcasts/iOS - google play/android - iheart radio -  or your favorite podcast app. Now on Spotify.

+ Click for EPISODE TRANSCRIPT

---

DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:06
Everyone, welcome to Episode 143 of the Juicebox Podcast. This is the first episode of 2018. Happy New Year. I hope you had a great holiday season. Let's get back to let's get back to learn about Type One Diabetes together. Guys, did you know that in 2017, the podcast had just a few hundred shy of 250,000 downloads a quarter of a million downloads in 2017. And the podcast is just growing and getting stronger. Thanks to all of you for sharing. I really do appreciate it. Okay, let's get right into it this year. This episode is a Facebook Live Chat where I went on my Facebook page, and people asked a bunch of questions about diabetes, and I did my best to answer them. I think you guys are gonna like this. It's a great way to get started for 2018. It's a great way to remind yourself that you can do these things you can be bold with insulin, you can make a big difference in your agency, your variability, your day to day blood sugars. And eventually that this all can get very, very easy for you. That's that's everyone's goal, right is to keep your blood sugar where you want without taking up all of your life. I think we can get to that for all of you. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. Hey, here's a big announcement. Very happy to tell you on the pod and Dexcom are back as sponsors in 2018. If you want to learn more, go to my omnipod.com forward slash juice box or dexcom.com forward slash juice box and you guys go to those links or click on them in the show notes. That is what keeps the sponsors coming back. So I do appreciate that. Okay, guys, here we go. Facebook Live q&a. Number two, we've done one before. Okay, you guys, type your questions. I will go into a stream of consciousness. Hopefully. I will say something you understand. It looks like Trevor asked a question. I'll start with that to get kind of warmed up said he's only been listening to the Juicebox Podcast for a little while. He wants to know which ones I would recommend they get a good overview about how I make bazel. bolus decision. So right off the bat, Trevor is assuming that I'm in anyway, well planned out enough to know the answers, things like that. But I think people seem to like Episode 11 bold with insulin. Texting. Diabetes seems to be one that people like anything with Jenny Smith in it, right? The CD who we talk about stuff with that seems to be really popular. There are links up here in the description of today's Facebook Live that you can listen to the podcasts on Apple podcast, Spotify, online, Google Play anywhere, really any podcast app you have. But I think mainly and I don't know if people agree or not, you guys can chime in a little bit. But I think that the conversations and the podcasts are probably the most valuable. I don't know that there's topics that are like, Oh, that one. That's perfect. I think it's more about listening to people talk about different situations, and how they do them, which is what this is going to be today. So hopefully, that answers Trevor's question. And then he said, How did I know when the honeymoon stage was over? I needed more insulin, Trevor, and tips for the honeymoon stage. You had to stay on your toes? Basically, I think that, um, you know, I think things can go back and forth. Robin saying, hey, Robin, how are you? That's pretty much it. And he also wants to know, this is interesting. What are the things that I've done to help Arden that she likes and things that she did not like? So I think he's looking for that might be a better for you people to talk about because I'm very northeast, I don't really care what my kid likes as much, you know what I mean? But I would prefer if she just did what I told her to do and didn't argue very much. I can tell you that. Joking aside, I think that we would try to be just very compassionate, and don't get lost in the day to day kind of BS of diabetes, you know, try to flip your lid, stuff like that, but it happens. Trevor, in the end, I think you just need to do what you need to do. Do it as well as you can and support your kid as you go. I think that's pretty much it. All right. So guys, we have a fair amount of people in here now. And nobody's asking questions yet, but I'm gonna kick it off. Right. So I think that one of the keys to managing Type One Diabetes is to understand the limitations of the insulin. And by limitations, I mean, how quickly is it start to work? Does it peak, when does it peak? You know, you need to understand what it's going to do not just what it's supposed to do not this just sort of bland idea that Oh, I'll put the insulin at and my blood sugar won't go up. You need to really understand it for yourself. Because

Because I think that most of managing type one and those of you who are here and are going to come back you know and listen to this later. You guys are here because you're probably seeing peaks and valleys that you you don't have highs and lows. And I think there are simple ways to, to kind of maintain a stable most of the time, right. Thank you, Sarah for asking any questions while you bail me out? How do we handle spikes that come two hours after a high fat meal that can seem to last forever, like restaurant food? That doesn't happen to me, Sara, it's not gonna happen to you anymore. Anyway. So do you have a pump, and you have a CGM? We do. So that's pretty much how I deal with things. My goal to how to handle a spike is to never let the spike happen. And I think that's manageable in a few ways. So first of all, you have to Pre-Bolus the insulin, the insulin needs to begin working before the food does. So. Jen, Sarah has an Omnipod index. Um, so do we, and this is going to be simple. The The point is what I was just talking about the timing advance on how the insulin works, you have to understand that when you put your insulin in, does it start working right away? Does it you know, take a little bit of time, you know, is it 15 minutes is it 20 minutes is a half an hour, are you starting with an elevated blood sugar already Are you not? And so that you can handle these handle these situations, just the way you want to write. So I'll talk about it the way I do it with Arden, which is, depending on the situation, let's just pick a number, let's say Arden's budget was 120. And it was 1130. And she was gonna eat at 12 o'clock, probably around 1140 1145, I would decide how much insulin is are going to need for this whole meal. And let's say it's 10 units, well, I want to give her enough to turn the 120 into an 80 by the time she starts eating. So I'd like to see at kind of diagonal down when the food starts, because the food's gonna hit her pretty quick most of the time, right. And so I want to see a drifting down blood sugar with some active insulin. And then when the food hits and starts to grab, hopefully the rest of the insulin kicks in while the foods trying to help and then you get into this sort of tug of war. And this tug of war, you have to try to imagine it like like a real tug of war with a flag in the middle of the of the rope, and the carbs are on one side and the insolence on the other side. And you don't want either of them to win, you don't even want one of them to get a head start. So the pulling of the carbs and the pulling of the insulin need to start at the same time, sort of have the same power going through and give up at the same time. And I'm going to tell you that if you go on my blog, you'll see like real representations of that, like breakfast is with all kinds of foods that you wouldn't expect or Arden's blood sugar never goes over 110 because the insolence timed against the food, even when she started to graze, we just add a little more. Now, you say well, it's not going to cause a low later, if she never peaks then because it writes are in your mind, you give this insulin the peak happens and then you end up low later, you must have had too much insulin. But that's not the case, you may have had the right amount of insulin, you might have had a little too much. But you might have had the right amount of insulin and it was timed wrong. So once her stomach empties and the insulin still behind. Now it's now it's on a freefall, right? Because now the insolence pulling against nothing, there's nothing resisting the insulin in their side. This whole thing is just about lining up the the pulling of the insulin and the carbs at the same time. I don't want to say it's simple. But once you figure it out, it is sort of simple. Does that answer your question? If she gets low later, then I would say in my mind, it's it's a simple concept. I would rather stop a falling blood sugar or a low blood sugar than I would fight with a high one. Like I would much rather have to give a juice box for a 75 diagonal down two hours after a meal, then been staring at a 300 and just not know what to do. Don't need more insulin. Should I wait? Waiting turns into five hours, sir, you know what I'm talking about? Like so. As we talk here, you're going to hear the little things that I do that kind of bring that all together. When says we are having a really tough time with managing highs at night. It seems like the food is hitting three or four hours after she sleeps. When What if I said How old is she? Is she growing? And are you getting up and bolusing at night? Because that is necessary sometimes. So I think that's another thing to really remember, which is that none of this is going to be like a light switch situation. Right? We're not going to ever be in a situation where like, I just do 15 carbs in 15 minutes, and blah, blah, blah. And it all just works. I'm sorry, didn't shave. By the way. I'm starting to realize I should have shaved. It doesn't go up every hour went home

setting it all it doesn't always work. Like when saying shoot when you might get three months where it sucks, you know, and you're up more than you're used to being, especially when you're coming away from a little kid sometimes the little kids before they start growing and everything. It's a little easier. You know, but as they start growing, it could get more difficult. It sounds like to me when if she's high, then you need more bazel overnight. And so that gets to something very slick. Let's go say this first. Nothing that I say here is advice. And you should not take anything like say as advice, talk to a doctor. But as long as we're chatting, real simple concept. If your blood sugar is high, you don't have enough insulin, or you have missed time to or a combination of the two. And if your blood sugar is low, you have too much insulin you've Miss timed it or a combination of the two. There are no other real factors. I mean, there's a lot of factors. But as far as the insulin goes, if your blood sugar's high, your blood sugar's low, it's because you have too much or too little insulin, or you're using it at the wrong times. So overnight, if she's just been high lately, you might have to crank some bazel. You know, pick a percentage and get going and see what works and keep trying and sleep during the day while you're driving and things like that, Sarah, hey, Scott, thank you for guiding us on your journey. Oh, please. You've given us great info. Looking forward to your podcast. Thank you, Sarah, the podcast is getting more and more popular as things go and really warms my heart, you guys sharing it is a huge thing, because I am not capable of getting it out there the way I need to when had her bazel up, but then she was crashing, or four or five. That's fine. Um, so the bazel is going to be like, like the boluses. When you got to, if she's getting high at 11pm, you can't start cranking the base level at 11. You maybe have to do it an hour sooner to stop the high. And the same thing as you got to get out of that bazel rate in enough time to stop the low. You're it's what you're talking about is timing. And there are going to be other things. I mean, I don't want anyone to misunderstand. Arden has to drink juice in the middle of the night. Sometimes I have to change basals and boluses. I bought this overnight. It's not perfect, but it is this effort that you have to give, it doesn't stop because you're asleep or you're tired or it's Christmas or like getting anything like that. Like it just that's what sucks about it is this effort is constant sunlight, you get these great nights, you know, just like some days you see a blood sugar that doesn't move all day long. I always just think the dexcom is wrong though. And I test but um, you know, sometimes that goes good and some days it doesn't try to nap a little bit. Get your husband to help you a little more. You know, don't get too exhausted because that'll really kick your butt. Okay, Justin said before we started listening to the podcast a once he was 8.2 after listening 6.7 Justin, Justin was on the podcast too. I don't remember if Justin's been posted yet. But if you haven't heard us on the podcast, you will at some point.

Unknown Speaker 12:46
Monica, how do

Scott Benner 12:47
I split for foods that I know will hit later. I am so good at this Monica. So I'm glad you asked Arden this year for lunch. This is going to apply to you man, I could just hold tight for a second. At lunch at school Arden needs to Pre-Bolus at 11:20am for but she's not she's still in class. When that happens. She doesn't actually start eating till like 1140. It's 20 minutes later. Hold on pile. We'll talk about breakfast in a minute. And so let's say Arden's blood sugar's at at 1120 I still need to Pre-Bolus even though if I give her 11 units that she needs for lunch, she'll be dead by 1140. So I can't do that. So what I'll do is I'll think all right, probably going to get a little high later because I'm not my timings not perfect Temp Basal increase 30% 40% for an hour and a half, two hours, however long I think her lunch might really sit in her stomach. And then I do a bolus, but it's an extended bolus. So if I need 10 units and her blood sugar's at, you know, I still need some of the insulin working in 1140, but not a lot, because I don't want her to get much below 65 before she starts cheating. So I may do 10 units extended zero percent. Now, the rest over a half an hour. So that 20 minutes later, the first my math here is going to fail me but the first two thirds of the insulin are at some version of becoming active or in her body. Right. And so that way when she sits in eat Maybe her blood sugar still 70 on the Dexcom. But there's insulin that's happening so that food doesn't get a head start. Now I might have missed a little bit because I couldn't be as heavy handed as I wanted because she wasn't going to be in class. But I've also added Temp Basal, and I can always text her and say hey, you know what, cancel the extended balls and let's bolus the rest of it right now. Let's get it all in right now. You're just talking about timing. In a real world situation that's not quite at school. The answer Monica is how do you split it up? You split it up the way you need to you need to figure that out like there's no like cookie cutter answer for that. But if you I can tell you this if you Bolus for food, right, and it's pizza, say, and 45 minutes later, blood sugar starts shooting up. And it you know, it levels off at 250. And then you end up adding a unit and a half. These are pretend numbers. And that brings it back down, then in my mind that unit and a half belonged in the initial bolus somehow, or as a part of an extended bolus, your blood sugar's high, you don't have enough insulin, or you've missed time that Robin says that Justin's blood sugar, he, once he went from seven, one to 6.0, in three months, she's saying thank you, I'm sure Robin, you did all the work, you just took these silly things that I'm saying these little things, and they let me rattle a couple off. And then I'm going to look at some of the first one, you have to be bold with your insulin, you absolutely cannot be meek, you do have to respect that. But she can't be scared of it, fear is going to kill you. If you're afraid of insulin, you're never going to get these things straight. Again, like I said, at the beginning, you have to understand the limitations of the insulin and how it works. Here's a big one. You need to be on the offensive, if that makes sense to everybody or not. But you when you

Unknown Speaker 16:03
you can't

Scott Benner 16:05
react, you have to attack, right. So when you wait for diabetes to attack, like you're always going to be on defense, and then anything it does isn't going to make sense. And you can't take anything actionable from it. You really, really, really need to not think of things that go right or wrong as things that go right or wrong. They're just data coming back to you. I did. It's the simple formula, I did this, this happened. I wish this would happen next time I'm going to do this. And and if you make a move, if you punch first, then you'll know that what happened, you affect it. But if you're always standing and waiting for diabetes to do something and chasing it a that's how you end up on the roller coaster. And be that's how everything that you're learning these these experiences you're having, you can't make sense of them. Because there's too many variables on the outside you need to take over you need to cause what's happening.

Unknown Speaker 16:58
When you find yourself bolusing

Scott Benner 16:59
too often, your basals probably not right, and you need to adjust your base. All right. You think of some other things to tell you that you might care about and I'm gonna get to some other questions first to drink.

Unknown Speaker 17:12
Okay,

Scott Benner 17:13
I don't count carbs, and I don't listen to what my pump tells me. So I know how much a meal takes because of those experiences I was talking about. For instance, if I know like I sent Arden to school the other day, she had a full size bagel. You guys are gonna flip out to Oreos, a banana, a small bag, a grab bag of chips, grapes, and a mixed fruit cup with no added sugar. How many carbs was it literally have no idea. But I do know it takes 11 units of insulin for and I do know what needs 20 minutes of a Pre-Bolus I those are the things I know. So when I look at food, I don't look at food and count carbs. I just look at food and go. I know how much this takes for my experience. And it looks carb heavy or it looks sugary like it can hit a real quick if it's going to hit a real quick I want to get more insulin in. If it looks carb heavy like it's gonna sit in your belly like a bagel. I might need to stretch the insulin out a little bit. Alright, more questions are here. Hi, Deepa. How are you? You're welcome.

Unknown Speaker 18:13
Okay,

Scott Benner 18:14
I was gonna say something really important here. My daughter is worried about lows. And she gets in a panic mode. She says if she's if she's 50, or she's at 80 is not low 80s A when you've wanted 80, if your blood sugar is 80 it's sitting there, he doesn't have time to panic, you just time to dance. That is a happy dance blood sugar. Here's the thing. At and falling that needs help. At and stable, you've won, you guys are so used to the idea that you're going to get low at some point that you're scared of lower numbers because you think what it's not going to give you enough time to react to do something. But once you do this for a while, here's what you're gonna learn. If you can keep your blood sugar stable 200 you can keep it stable 150 if you can keep it stable 150 and keep us at 120 and if you can keep it stable on 20 you can keep it stable at 90 the only difference between this 80 that she's talking about, and 180 is your fear. That's it. And so it might not be an actionable idea for today. But it's going to come and you'll get to that spot. Don't panic is is the best thing I can say if you need a little bit of insulin or or juice or whatever it ends up being just don't overdo it. You know don't don't get yourself on always bumping nudge or does everybody remember we talked about bumping lunch on the podcast all the time. You see a 90 and you're a little worried about it. Don't eat anything cut your bezel off for a half hour see if it drifts to 100 or 15 minutes or down 50% for half an hour, whatever it ends up being for you. Just don't panic. Don't eat a banana because you're 90 and you want to be 100 you know just like if you're 120 and you want to be at don't ball nine units, just bump it a little bit, maybe raise your at once or your base a little bit. Just see if you can get a drift to happen. Just by nudge and bump and nudge. Holly said we are on the fifth day of the only pod partially thanks for listening to you and are struggling with the same things earlier mentioned. timing of high carb high fat for example, a birthday dinner last night. He had Fettuccine Alfredo. Well hold on a second high carb high fat cakes actually gave him all the insulin ahead. Pre-Bolus we thought we had nailed things who's between 95 and 100? That's very good Holly and from 730 when we ate until 11 then while we were sleeping when he started to drift up over 300 he didn't eat anything after dinner. Holly your overnight Basil's were they Okay, when you weren't eating? Or the you know, it is? It's a complex car, but it could sit that long. It seems odd to think it would sit for five hours but in that situation, here's I'm going to ask you how I need I need you to tell me give a CGM. I'll get back to you after you tell me that. Lacey said my daughter was diagnosed at 21 I told her from the beginning this disease would not prevent her from doing what she wants in life. She really is making me want to eat my words Now as she says she plans to co do mission work in Guatemala that's cool Lacey. She's 25 now does need permission I find it hard to envision she can survive in a poverty stricken she can survive anywhere. Lacey, if Arden came to me at 25 that same idea. First of all, I would say I don't know what I would say 25 Why don't you have a job I might say at 25. But but but I still like this. Okay, this is this is a good thing. Listen, if she's got a dexcom you can you can, you can be a follower and you can maybe help her a little bit. If she needs it. Maybe she'll need a little remote help. But if she's well controlled here and not doesn't get into scary situations, I don't see why Guatemala would be any different. As long as she has access to her insulin, she can keep it cold. And she remembers to take care of herself and she has the the supplies she needs. I think Lacey This reminded me of a story right? Where the the way I was able to be more aggressive with Arden at school, like we talked about earlier, was this simple kind of like aha moment where I was sitting in my in my living room. And Arden was upstairs in her bedroom. She was little I don't remember maybe second or third grade, second grade probably. And I and I looked on my my Dexcom. And I could see that I thought she needed some insulin. And so I texted her and I said, Hey, Arden bolus a half a unit. And she said, okay, and I just was like, Oh my God, that's amazing. Like I just remotely gave Arden insulin sort of right. But then I realized I wonder why I can't do that while she's at school. And I realize I can and the only thing again that was stopping me really was was my fear. Like what is the difference between art and being upstairs or art and being at school, and me help air. My fear is the only difference and in some small way. Arden being upstairs aren't being in school aren't being in Guatemala. It's sort of the same thing. Lacey, there are amazing people doing amazing things with diabetes. I talk to them on the podcast all time guys cross country skiing in the Olympics. Professional Baseball players, actors listen to the Victor Garber interview left home when he was like 15 years old with diabetes. He's like he's in his 60s now he's fine. She'll be okay. Your fears the issue. That's what you need to work on. I think

Julie and I haven't really ever talked about on the pod static because it doesn't happen to us. But I know there are some people online who say like putting a piece of duct tape over it might help. I've seen people take dryer sheets and rub them all over themselves and stick them in their pockets. I think it all just needs it's it's how dry the here's what I think about that. It sucks. But you know hot air heat dries it out. When the pod thinks it's got a problem it shuts itself down for safety reasons I try to think of when stuff like that happens within the pod is thinking okay, other pumps don't have static issues, but I've never caught my tubing on a doorknob but then on the pot so everything's not perfect. Justin ever heard about LASIK eye surgery with type one? I don't know anything about that man. I'm sorry Deepa, curious to know on what do you think would be a good age let the kids decide on dosing. He wants to try. I don't think the age is right. And it gets up to the kid. It's up to the kid pill. You're welcome. I think that if, if they're ready, they're ready. practice at home on the weekends. You know, when you're when you're gonna go do something, get it in your head, how much you think he needs? And then they ask him how much do you think this is what I do with art and all the time? I'm like, Hey, you need insulin? How much do you think you need? And she's really close sometimes. And so recently, I think after school, I said that she was having a snack and I said seven units. And she's like, I think it's a I was like do eight because what's the worst that can happen? Like 786 and a half seven not gonna kill them over a unit and pay attention to it. Right? Holly? You said yes to the Dexcom going back to Holly's. Okay, so Holly, I might say that you're, if overnight basals right seem great. Unless he has hard carbs over then this is something you need to just be ready for. That's it, you know, if you're going to do a high carb meal at seven o'clock Can you know what's going to make him high at 11 o'clock, then at 10 o'clock, even if you're looking at a 110 blood sugar, you sort of have to have the balls. Do you know what I'm saying, Holly to crank up his bazel, then here's a big thing everyone should listen to us. It's not just for Holly. We're going to start today with our longest sponsor on the pod. There's two different situations here, maybe you're a pumper already, and you want to change to the tubeless insulin pump that everyone loves on the pod, maybe you're doing the injections, and you need to get on a pump. Those you're probably used to situations here. If you are those people, I have such a deal for you, you're going to go to my on the pod.com Ford slash juice box, put in just the tiniest bit of information about yourself and on the pod is going to send you a free, no obligation demo pod. Now, let's go over the important parts of this. It's free, and there's no obligation, it's going to come to your house where you can try it, you can wear it and see what you think you can put it on your child and see what they think and get a real good feeling for it, leave it on for a few days, when you were the army pilot, what you're going to find is that you almost don't even know it's on. I just worked demo pod recently. And to be honest, I completely forgot that I was wearing it. Now, once you've done this, you've done the demo, and you think yourself, hey, I'm going to do more, you just keep in contact with Omnipod. And they're going to help you get started, if that's what you want. And if that's not what you want, whatevs, nobody's gonna pressure you don't use the army bot, if you don't want to be like that. Don't have tubeless insulin pumps have a big tube insulin, pump, a tubing wrapping all around your face, like spaghetti, or keep using injections if that's what you like. But at least you're going to know that this is what the Omni pod is. And maybe, maybe this is what I want. Try the demo today by going to my on the pod.com forward slash juicebox. Or click on the link in your show notes. You just never going to know until you try.

Everyone should listen this. It's not just for Holly, so much of this. It's a convoluted sentence. So listen to me closely. So much of this is knowing that what you know is going to happen is going to happen and believing it's going to happen. Because you can't make those decisions. always hoping, like, oh, his blood sugar's 110. But he's gotten hired 11 o'clock every time he's ever had fettuccine, but let's hope this time it doesn't happen using Holly's as an example. It's going to happen you've seen it happen over and over again. So you have that information now act on it. I think that's sort of it you kind of have to have the nerve to act on what you know is going to happen is gonna have you have to trust it. Now once in a while. It is diabetes. Once in a while it never works. Which is fascinating, isn't it? Like it happens seven times that are like this, then on the eighth time, nothing happens. There will be a time that Holly's gonna crank up her kids base. All right after fettuccine. His blood sugar's gonna go like this cost of doing business, would you rather be low once in every seven times a week, fettuccine, or high six of seven times. Trust that what you know is going to happen is going to happen. Make your decisions based on that. Lindsey says any advice, Lindsey nothing you hear on the Juicebox Podcast is ever considered advice, medical or otherwise, on getting my son to try a new spot for his next calm. He's only ever done the back of his arm. I bribe him with money or things. children seem to like things and money. It's tough. Arden doesn't like to move around either. So there's places like art and wear shirts on our hips, like between the bone over like our hip bone or pointer and sort of the roundness of her butt cheek. There's a kind of a flat spot on or in between and we go back and forth and back and forth. You're welcome, Holly. It's gonna be fine, Holly, just keep going. You're doing great. That's those boluses and Pre-Bolus as you're talking about for that fettuccine are amazing. You just got to get the back end of it now. You can do it. You know what you're doing? It's obvious from your from your question,

Unknown Speaker 28:56
Lindsey. I

Scott Benner 28:57
think seriously, I know it's gonna sound flippant, but their kids bribe them. I would I've given art and money to move her pump somewhere else before. Because you know, once they get it there, then she's like, Oh, I like it or I don't but at least you tried. Lindsay you're full of things here. Let's see also sleep over advice. Ah, sleep overs. Everyone hates sleep overs. Not even just because of diabetes. It sucks. My son used to love sleeping his best friend's house but now you're not comfortable with it. A question starts in my mind are the best friend's parents idiots. Are they reasonably bright people? If you think this is something you can explain to them you have Dexcom you can put maybe Dexcom on their phone, set them up for alerts that would let them sleep. Right. But but would remind them if something really went wrong, and you and your son could text back and forth you might not get a lot of sleep. So Alright, so they're great people I'd have a conversation with explain the tone. I it's I've done it in the past and it works out really well. I also will still sit up a little bit and watch our instex calm while she's sleeping over but she I handled on our own at this point, we handle it literally just how she is at school, we text back and forth. And when I get to a spot where I'm comfortable, she's going to be good overnight, then I kind of go to sleep and I rely on the Dexcom a little bit. And I rely on the fact that I've spoken to the other parents and that they have alerts set up on their phones. Alright, Robin, I'll talk about Expendables more in just a minute. But Lindsey said, I force him to where's the expert, he is so nervous to try a new spot. Totally bribe him. And you know what I tell Arden all the times, don't worry your next time if you don't want to, we'll just test your blood sugar 15 times tonight. And that pretty much shuts her up. And Lindsay, no one wakes up to alerts. That's why you have to sit up you got to find something on the Hulu or Netflix that you love. While the kids have to sleep over and you chill out and power through about seven episodes of something keeping the kid alive with your your phone. Monica i calibrate when it asks me to calibrate. And that's it. Where if I see that it's incredibly off, but the arrows not moving. If that does happen, everyone's watching but anybody ever had one of those days where you're like, You're welcome, we'll see where you're like, Oh my god, this is great. Her blood sugar has been 95 or seven hours. I never trust that I always test that. Robin extended bolus is just another way to, is to stretch things out. It's the it's really all it is. It's just um, if giving all the insulin up front is not a good idea. But you know that all of the insulin is going to be necessary, like in a situation where pasta sit in your stomach for hours, you may need to, you may only need 15 units, but you may need five of them as a Pre-Bolus and three of them over the initial hour. And you know, four more of them in the next the last 90 minutes or so. It's it's just a way to extend it. It's 30% now and the rest over an hour. And then you understand that the 70% of it gets split up into little bitty bits and spread out over an hour. So you have insulin constantly going in for an hour. And it's constantly becoming active at different times I talked about that sometimes is like it's like carpet bombing with insulin like you're covering everything with insulin. Lacy said I'm correct. Of course I'm correctly see. Now I'm just kidding. Your fear is the problem. I feel my knowledge, the ability to help her is very limited since she was diagnosed as an adult. But would you like to adopt her while she's in Guatemala? Sure. That'd be great. I'll watch your kids blood sugar while she's in Guatemala. I mean, look at me. I'm getting plenty of sleep. Extended as necessary for pizza and Mexican. Jason absolutely not Mexican. Listen. I am completely proud of and I almost did it earlier than I stopped myself. But on my blog, which now that there's podcasts, I don't know if people even care about blogs anymore. But I have to blog posts that I think you guys should look at. And one of them is called Sorry, I'm clicking while we're talking about the anatomy of a high carb breakfast. Okay, we should definitely look at this one. Because it's got like visual helpy in it. And there's another one about Chinese food. Where is it? Oh, here it is. YouTube and Bolus for Chinese takeout. It's all about the timing of the insulin right amount at the right time. It's all it is. All of this is the right amount of right time. All right, let me see what else I got over here for you. While you guys are thinking of other stuff to say, Oh, the weekends. Anything you want to test is always better to test on the weekend because you're home, right? So if you are nervous about Pre-Bolus sing at school practice on the weekend, make a school lunch for lunch on the weekend and Pre-Bolus and on Saturday. And if you get close, but not quite right, look

at your kid and go, Hey, tough luck. You're gonna have this again tomorrow because mommy is going to try again. Because it takes away variables. And the more variables you can take away while you're trying to learn how to do something, the more you can trust that the data you're getting back is doing what it's doing for reasons you kind of assume are right? Seriously, you have to learn how much time your insulin takes to work. It's going to affect how you use Bolus and bazel. And keep this in mind too. I was interviewing somebody one time about artificial pancreas. And it turns out that a lot of the insulin that artificial pancreas uses is actually bazel. And that's fascinating because it doesn't Bolus as much as we do. But what can the artificial pancreas do that we can't do? It can't imagine the future. But if you have a Dexcom it's you sort of can't imagine the future. I hear people talk all the time about the two hour warmup periods. The scariest time I used to think that I don't think that anymore, because

Unknown Speaker 34:43
I now

Scott Benner 34:44
I don't know about you, but I can imagine what Arden's blood sugar is most of the time without looking and that's because I've had enough experience and one day you'll have enough experience to and during that two hour window. You'll actually see on one of those links I shared I think it was the Chinese link that door in Chinese food Arden's pump Dexcom needed to be restarted. And so I was blind for two hours. And you'll see that during Chinese food or blood sugar, we're still like one time afterwards, I think only tested one story in that everything. Because I could I knew what I had done it before. I knew what was going to happen. I trusted that what I knew was going to happen was going to happen. Okay, here we go. I didn't scroll. Jason, you don't extend pizza anymore. Take Oh, no kidding. So the pizza takes that long to hit you. And then you just put all the insulin in at once. That's fantastic. See, there's something Jason's figured something out. He doesn't need the insulin for the pizza. When he starts, he needs it an hour later. That's going to be different for everybody. But it's a fascinating example of after enough experiences, you'll figure it out. Monica, do I use correction formulas anymore? Oh, like my pump says, My blood sugar is 150 you use this much insulin. Never. I don't look to my pump for ideas. I couldn't tell you what our insulin to carb ratio is. I'm a little aware of what her basal rates are. When I when I see her get high for a few days in a row. And I can't find a reason why if I see like she's looked like she's gained some weight or she's growing. I just bumped her her basal rate, however much it occurs to me usually I do 30%. But that's just what I found works. And the same with corrections and things like that. If Arden's blood sugar is 200 and it's you know, been three hours and she ate, then there's an amount of insulin I think that would take but it had been two hours and she ate it. It's situational. You don't always need the same amount of insulin to move a number from one place to another. It depends on the situation. What's in your body. outside influences like stress, anxiety. I mean, we Bolus when our employees used to play competitive basketball, I'd have to Bolus for the adrenaline. So she needed like all this insulin. This this is an interesting story. So Arden would used to she'd go in to play basketball or blood sugar be good 110. And then she stopped playing and like 20 minutes later, a bunch of was 210 it was going up and I'm like, Whoa,

Unknown Speaker 37:07
what happened

Scott Benner 37:08
to eat anything while she was playing basketball was the adrenaline right. And so I started getting to the basketball game and bolusing an amount of insulin that I knew a juice box could stop. I know that doesn't quite make sense. But I figured if the anxiety hits the way I expect it to she's going to need that insulin for the for the adrenaline, excuse me. But if it doesn't hit her, then I've got a juice box to stop it. I'm just basically Pre-Bolus in a juice box. Somebody told me once that was incredibly helpful information to have so I've now shared it with you. My daughter is such a super slow picky eater, when you could trade her in for other children probably I Pre-Bolus. But I can't always give a full amount since I don't know how much surely. So I start with 20 carbs and wait till she finishes give the rest. It is frustrating. But that's a that's a great way to handle it. You are basically doing a manual extended bolus some now some weight or some Now, let me ask you a question though. Does she usually finish the food? Or does your anxiety that she's not going to finish the food which isn't there? Hey, Kelly, has Arden hit crazy girl emotional puberty and kind of refuse to deal with the and yeah. I don't get life isn't fair. And I hate diabetes from art. And I just sort of get like a that's like a Death Stare. Like, sometimes I look at art. And I think one day she's gonna make some lucky guy really unhappy. But but so I get what you're saying. Right? So I don't know. Like, if that happens to me where she just blatantly says no, it's a tough call. Like it really is like, I know, some people say just let them write it out. And some people will tell you, I'm not gonna let her blood sugar jump all over like this, I would probably I would probably say, um, I would probably eventually do what I gave someone a vise to do one time, and they told me that it worked for them. So there was a person who told me about something similar one time. And I said, If I was you, I would just pull them aside and be really brutally honest with them and say, Look, the way you feel about diabetes, I gotta tell you, I feel that way too. This is incredibly frustrating. And I understand that you don't want to be involved in it as much but but this really is the situation. We are going to need to get past this. But for now mommy or daddy or work, I'm going to help you I'm going to get more involved. I'm going to I'm going to cover the parts you can't handle. But you can't give up on me we have to do it together. You got to realize that I feel the same way about this as you do that we're in this fight together. I'm gonna I'm gonna pick up a little more of it for you right now. Because I think that, you know, I think that you need it, but you we're going to get you back to a spot where you can take care of your, you know, more of the way we were. In the end. I just think it's, you know, I hear people some people say I just you know, my kid does it all the time. But if you listen to the interviews that I do on the podcast that people who are like in their 20s adults who can remember being 14 and 12 and 11 Diabetes. I have never once heard someone say, hey, my parents were like you go get it all by yourself. It'll be fine. And it really worked out. Well. Most of the time. This is a lifelong disease. It is difficult. I don't understand flopping it onto a kid. It's weird. So the way I do it is I just I keep, I do things with Arden, I think one day, she's going to take a little more, take a little more, take a little while, I just feel like it's a really slow handoff, hopefully getting her into high school where she'll I'm assuming she just won't want me involved that much. And maybe that'll help her take over a little more on when your kid usually doesn't finish. Okay, well, then that's what you know, then instead of looking at the plate and saying, Oh my God, if she finishes this, it's all this insulin. Why don't you just Bolus Pre-Bolus and Bolus for the amount you know, she's gonna finish like reasonably No, she's gonna finish. And then if she should eat more than add more, so plan for success on less food, not the plate, and then readdress if you have to, again, that link I put in for the breakfast thing. It shows how Arden had this sleep over one night and all the kids came in and they wanted french toast there was like fresh fruit and French toast and I forget all it was there was so much stuff. And I just had to keep, like adding a little bit and adding a little bit. It was timing, still, but based on moments that she ate, maybe you just have to think I know it's such a pain in the butt. You just want to sit down and eat dinner that sucks. I'm sorry. We're about two thirds of the way through this episode. There's still a lot of great questions coming up. But for a moment, I want to tell you about something that some of you know about. But some of you don't know about its continuous glucose monitoring

with dexcom. Now this turns out to be one of those things that everyone in the know knows about right away, you say Dexcom and they have these warm thoughts of being able to see blood sugars and how fast they're moving and understanding trends better. More importantly, you find out Hey, my blood sugar is about to leave the zone I want it to be in and I can bump it nuts. You're hearing us talk about this today bumping and nudging it making these tiny little decisions that are based on the information that comes back from Arden's dexcom continuous glucose monitor most of what I do, I couldn't do without that information coming from from art Instax comm there's just there's no way around it. Today while I was editing this episode, I was watching Arden's blood sugar while she was at school. And we are right at 85 most of the morning and all of a sudden she started to drift a little lower and a little lower. And I didn't have to panic because I could see sure she's going a little lower than I wanted to, but it's not happening quickly. So the first thing I did I cut back or bazelon son, and it helped beautiful right. And now we're five minutes away from giving Arden her insulin for lunch and her blood sugar's 92. She didn't have to eat a whole bunch of food this morning to stop a falling blood sugar I just do in time. I said, Okay, this is what's about to happen. I'll just restrict her insulin here a little bit, everything's gonna be okay. And it was there's just a small example of what Dexcom can do for you. And I was able to see it on my follow up, because Dexcom Sharon follow is available for Android and iPhone. So Arden's phone shares or information on my phone follows that I see her blood sugar in real time, I have not spoken past the music, but let me just tell you this, go to dexcom.com forward slash juicebox, you will not be disappointed. There's also links in your show notes. Alright, let's get back to it. I'm going to ask the first question to get us going again. Do you find yourself accepting blood sugar levels that are higher than you want, because of your fear of insulin? If you do, a lot of people do, but really, really, really, really try to stop yourself from doing that. First of all, if you have a Dexcom, high low threshold, it's important to take your high threshold and push it down. I know people get back open and alarms all the time. But I swear to you if you start doing these things we're talking about here It won't alarm as much. And you can't think of it as this alarm that told you did something wrong. You have to think of it as a warning system. I don't want to know when the tornadoes here I want to know a half an hour before the tornadoes here so I can hide on Arden CGM hers alarms at 130 as her high, but on my side and alarms at 120. So you never 120 straight up and that doesn't happen to us. But if I'm 120 diagonal up little bump brings it right back again. If I didn't know until 150, then it would take more insulin, then I'd have to be harder than by the time they started working. She'd be more than like 200 then it would sit there wouldn't be enough thinking about more insulin and that's how you end up low. That's how this concept comes into play. Highs cause lows because you're using more insulin, and eventually, it gets out of balance. you'd much rather just bump a little bit 120 Oh, here's a little bit of insulin 120 here's a little bit of basal rate. And that way 120 goes boom right back to 110. If you wait until 200 or 250 you are now bolusing like a lunatic and you will get low later. It takes less effort to bump in nudge than it does to ignore. So you think you're giving yourself this time off from diabetes by not being alarmed until it's 200 or 250, or whatever. But all you're doing is creating Three hours later, are you going to thinking nothing about nothing but about this high blood sugar? I'd rather know, every couple of hours, bump, bump, bump, then be steeped in it for three hours. I think think that's just really important. And I think also what's important is the way to accomplish that is to trust yourself. You have to give to really believe when I said it earlier, but you really have to believe that what you've learned from past diabetes experiences is true. And that's it. Just you know, expected. Alright, what else we got anybody else asking questions? Oh, you're welcome. When the emotional girl puberty thing is killing me. Most people say Kelly that I grew out of that by the time they're like, I don't know 27. Robin anxiety Like what? Around bolusing in general, about how you have to address it with insulin.

Unknown Speaker 46:08
Let me know. Has Arden

Scott Benner 46:09
tried the fiasco? Mandy? We haven't yet. I don't think it's what I heard was, it might not have been doing really well in pumps. And I was sort of waiting to hear a little more about that first. But I think that once faster acting insulin is a reality that everything we're talking about now just becomes a little easier if it if it works faster and the way they say it's going to Lindsey asks, What do I treat with in the middle of the night my son never had cavities before type one Yak you're gonna get cavities with type one. If you're drinking juice in the middle of the night, that's for sure. We had a problem too. We had a juice that Arden loved but it gave her cavities. And so we switched to a different juice in and that one's been better. I hear some people say they leave a bottle of water at the nightstand and the kid drinks the juice and then they give them a little swish of water. That helps a little bit. But I have to admit, I use juice boxes. I don't know what else to do. If Arden needs food. I don't know how many of you have this experience. Probably a lot of you but I've seen Arden eat a banana in her sleep. Which is fascinating. You just kind of like put it up through our mouth. Like I'm going to use my my cactus pen as an example. I have a pen that's a cactus I don't think you need to judge me. But um, but you take the just like Arden banana and she just takes a bite. And I'm like and she chews it up. I wait till she's done chicken. I've seen her eat. It's fascinating. But yeah, juice, maybe try swishing with water afterwards. Use a fluoride rinse more often. You know, that kind of stuff. Make sure he's brushing right away in the morning and before bed and stuff. It sucks. Lindsay I know. Stacy, I sent you a Christmas card. Did you get it? Everybody? If you like my book, it's because Stacy Martin Dell helped me with it. She's in the chat right now. If you like my book, thanks, Stacy. I took a bunch of crazy she kept me sane while I was writing by sit by letting me get on the phone and say incredibly inappropriate things to her. Thank you, Stacy. Love you. How do I decide whether to Basal or Bolus in regards to being bold with in some situations? You know, again, like I said, if it's if she's 90, or you know, 110 and I wish she was 90, I might just you know, crank a little bazel. But if there was just food, and our blood sugar's heading up, I'll tell you right now I bolus for food. And in 45 minutes after a meal bolus, I see a diagonal up arrow over 130 I bolus more because I figure I miss because if you'll look at the charts when you look at the links, I know I can Bolus in a way that doesn't let arise happen so four eyes is happening I probably didn't use enough insulin or maybe I miss timed it now I've got to use some and I might have to catch a low on the other side. But you know I again I'd rather catch I'd rather stop below or following blood sugar than fight with a hot one. So it's situational Kelly it's just experience Robin I got to go back to what you said Do I have any advice for anxiety you know the only thing I can say not really diabetes issue just medical and safety outside etc hi Michelle. I guess I guess I don't know what you're asking me Robin I'm sorry like anxiety about like having diabetes or just my kids really chill so there's not a ton of anxiety although she used to get interesting pee you know people say I'm talking about pod chain ties when you change your insulin pump your blood sugar gets highlighter took me a long time to figure out that was Arden's anxiety, the clicking that the pod makes was freaking around. So people are like you know people like to say like the pod doesn't deliver the right you know, right after you put on stuff like that. I've learned none of that is true for us at all. I as a matter of fact, just changed Arden's insulin pump while she was at school on Wednesday. We at 1115 changed her pump because it was going to run out of insulin. I get it in the nurse's office. I went over I changed her pump with her We tested, I cranked up a bazel, like 95% for an hour and a half, and we bolus right then in there. And she didn't get high afterwards. But she's also not nervous about putting a pump on anymore like she used to be. When do I plan on handing over bolusing decisions with two are when she's as good as I am? I don't know. When she we talked about a little earlier, Susan, like I think of this as a slow handoff. I think Arden learns as we go. And so the more she learns the more I asked her opinion. We do do. In the summertime, I try really hard to involve her in every decision we make even the littlest ones, but the fact of the matter is, she's 13 she wants to look at Snapchat, she wants to watch One Tree Hill or something like that on Netflix. And you know, she's gonna figure it out eventually. I'm already exhausted looking like, I'm gonna die soon anyway, I might as well go into the ground hard. Susan, supporting Arden But hopefully, um, you know, hopefully she she's picking it up slowly and slowly. If I have to get more I guess Can you guys hear bazel snoring Faisal

stop buddy Facebook Live you know, as she figures it out when she looks like she knows what she's doing. She does more. And that's pretty much it. She's at the movies now with my wife. And they're not having as much success with their blood sugar's they would have had if I was with them, but it's also you have to look at what I'm saying is not success. Like she's, Oh, hold on. Okay, that's not working. She's 141 but to me, that's, you know, I'm not happy with 141 but that's it. Like my wife did a great job. She came out of a she she came out of a little bit of a almost a low situation. She stopped it with the Temp Basal which is cool. And then if I'm looking at looks like she didn't have the nerve to Bolus while her blood sugar was a little lower. So she saw 150 before she got back to 140 but I want you to keep in mind Arden's probably eating chips, nachos popcorn probably has a Slurpee, to be perfectly honest with you. People are texting me think I'm doing a good job. All right. That's very nice. Here we go more. How long do I wait before giving more insulin to stop there? Always listen, when you listen to the podcast, stop the arrow. If you ever Dexcom stop the arrow, you're always trying to stop the arrow. The arrow goes like this. Stop it. It's going like this. Stop it. You don't want to crush it. You want to stop it. It's bumping and nudging. How long do I wait? She's saying if in 15 minutes, the first bolus didn't stop it, then how would you wait or immediately give more when I would 100% trust your gut. That's what I do. I don't have a formula. I'm so sorry. I just think not enough too much. It just it I really don't think about the math of it at all. I'm so sorry. blood sugar's high more. blood sugar's low, less. Pillow 141 is great. It is but I'm telling you, I could have done better, but they're doing great. They're having a lot of fun. There's no anxiety they're out seeing Pitch Perfect three, which I don't know how they got to three of those movies. But they did I did enjoy the first one. But see pebble that's what you're saying is really it's great. Because it's going to lead me into this very childish statement I'm going to make that I find to be true. Moreover, moreover, more often than not, you get what you expect. So expect a blood sugar of 110 you'll get it because your expectation will let you see that arrow and go No no, no. Right like but if you expect that 150 is not that bad then you'll watch that 110 hours ago huh 121 3140 then you get into that I don't know how old everybody is in here but then you get into that you guys know that game from Bob Barker long microphone prices right? And the the like the little Alpine like mountain climbers going to at least going up the thing and you're and you're watching it goes like oh, it's gonna stop. It's gonna stop it's gonna stop and they falls off the side who he didn't stop. How about that. That's those diagonal up Dexcom lines. I hate them because you never know when they're going to stop because you always he always gives you that feeling right here like what's gonna stop. I don't want a bolus, it's gonna stop, it's gonna stop that it never stops. So just give it a little maybe you don't need the whole thing. Use half the amount of insulin you want. crank the bazel up real quick. Do something. But that that mountain climber most often in that game falls off the side. He doesn't usually stop. It does bring up this though another drink. And we're coming up on an hour. There's two different spikes. You see after a bolus, there's this one that goes straight up and then there's the gradual one. This one straight up to me means you probably didn't use enough insulin at first before the meal right because the food one right away. Now maybe your Pre-Bolus was not long enough and that could also be the situation but it gives you An idea straight up like this means you missed pretty big, you're going to need more in some probably, this might mean, maybe I should have started my Pre-Bolus. Five minutes sooner, maybe this would have been this. Maybe it's a little bit of insulin, but the severity of that, you know, if you're if you're getting this, I attack again, attack, don't don't defend don't, when you're reacting the diabetes, you're usually losing, you should be making the first decision, because at least then when it like if the budget is going up like this, and I go, whoo, two more units, which I'll do sometimes like two more, three more and more and more and more. And then and then all of a sudden, the arrow stops and it goes like this real quick. You're like, oh, what I do what I do what I do, but sometimes you just go Okay, think of it this way. So you put in a unit for an up arrow, and her basal rates a unit an hour, well, if Five minutes later, the error levels off. Just shut the bazel off. Just trade that bolus that aggressive bolus you used.

Unknown Speaker 55:59
Go Oh, geez,

Scott Benner 56:00
it turns out I didn't know that and take it away from the it's like borrowing money. You know, I took I put some here, but I don't need it anymore. I'll take it from over here. And I'll get balanced again. I hope that makes sense. Doesn't it take the bazel time to kick in it does. Kelly that's where I can't decide whether Basal or Bolus It's a situation thing. I mean, if if Arden's blood sugar starts going up right now, then it's a it's a bolus. If it's drifting, like, you know, when that arrow doesn't move, but you go from 105 to 110, maybe I try a bazel. Then, when you have more time to wait for the Basal to work, use the Basal or a combination. We haven't talked about this. But if you're trying to affect the high blood sugar, or or beat down like food, high carb food, there is nothing like a mixture of Basal and Bolus. Excuse me, I don't know why it is. I don't know that. Honestly, I don't know the technical reason for any of this. But if I see if I think oh, this Chinese food is going to take 12 units, and ardens Basal rate right now I think might be like 1.7 an hour. Well, then I'll double her bazel for like an hour and a half and think okay, well there's two units two and a quarter units. And now I'll put 10 more in the Bolus. But I like having in carb heavy situations, I like having Bolus ramped up and Basal at the same time, I find that that works better it also if you have a 300 blood sugar, don't just Bolus it. Double your Basal to it'll bring it down faster and smoother. Alright, that's everybody out of questions. There's still a lot of people, you guys really hung out. I appreciate? Did I not answer anything or a couple people here I was hoping would come in that I didn't see. I give you a little bit of a personal thing. I don't know, nobody's asked about it. But if I was you, I would live like a cure to type one diabetes is never coming. I would hope for it in the back of my mind. But I think that worrying about it every day is it's too much to take. Just I live like it's never gonna happen. I never stop hoping but I assume in the decisions I make that it's not going to happen. I think it can be very dangerous to think that you're welcome, Kelly, to think that, um, it's coming. So I don't have to take very good care of myself right now. You should, you should assume it's never gonna happen. Hope it will. You know, I hope it will too. But I don't, I don't expect it. And so we make decisions based on this is what diabetes is. And this is what I have to do. Alright, let's go over a couple of things. Insulin is like fire, respect it, don't be afraid of it. Gotta be bold, you have to be bold with insulin. You have to be there is a reason people emailed me and said please make bold with insulin t shirts. Because it is a mantra you got to keep it in your head. I need to be bold, I need to be bold, I got it I have to beat my fear back always By the way, still test you know don't be Don't be a lunatic but but within reason. err on the side of too much of a top too many times, all of us with diabetes, we err on the side of caution and that always leads to high blood sugars. So be more aggressive You know, when I started doing the more aggressive thing when I started being bolder I started adding in this insulin and I thought oh my god this is gonna be way too much but it wasn't even enough and I was like oh, I need more I thought I needed less like how could it was just my fear so just try more like when people say I don't know how to change my adjustments on my pump turn them up use more try it you're not gonna get you know if your basal rate is one an hour and you go to 1.2 you're not killing anybody over that you might just get low and go I was too much but you're probably not going to it's not that much more insulin just try you have to try things please don't wait to go to your endo. Although those are great. Happy Holidays. Robin How can I was every Merry Christmas Happy New Year guys excited right? I don't know what I'm getting. I'll tell you what I got Kelly though. woman goes to sleep at night a body turns into a furnace and then she puts the air conditioner. On and almost kills all of us. So I've bought this giant ceiling fan that the reviews I say, Tell me are going to literally blow us down into the bed. And hopefully that will keep her cold. I will still freeze, but the children will be saved. So really how long before I cracked Jason, when I think I screwed up? That's it.

I really, I really, as soon as I think Oh God, I did this wrong, I put in more. Because like I said, You it juice boxes is a great example. You can always use the amount of juice box takes and if you're wrong, if you use the insolent you didn't need it. It's like Pre-Bolus in the juice box. If you're right, you win. And so at the very least you get information for next time. And you're able to say Okay, you know what, last time I saw this 140 diagonal up, and I put in three units. But I need to have a juice box later. So next time, I'm going to do a unit in half and see what happens there. It's always that math. It's I call it the Juicebox Podcast math. I did this, this happened, I wish that would have happened. So next time I'm going to do that it's a formula that should lead you to a better and better situation as you move forward. You're welcome when I hope it was helpful. I thank you. Oh, how long? Hold on, Jason. How long before I correct? No, how low? How low? Oh, hold on. You mean, if I'm falling? When do I do something about it? I don't think of origins blood sugar as being low until she's under 60. I start doing something about it at 70. Her lows at 70. So if it's been four hours since food, and she's 70, I might just cut her bazel off for a half hour to see if I can get the drift. But if she was 70, diagnol down, I would do something about that. But 70 and 130. Those are that's the range that we react in most of the time. Hopefully she brought me an electric she doesn't think about me at all, Kelly that that's that's obvious after being married for 21 years. So I'm just here to take out the garbage and take care of the diabetes and stuff like that. See the sparkling Santa Claus in the background? I asked for that not to be put up. There it is. No one listens to me. Time. Rachael Haynes, you just joined except we're getting ready to stop break. Should you have any questions? I'll hang out with her a second. Hey, guys, this is gonna be available on the podcast this weekend. What is it Friday, I'm gonna put it up. I'll put it up like Christmas Eve or the day after Christmas or something like that. So you can go back and listen to this whole thing I've been recording the whole time. Let's see my microphones for the podcast. Actually, before I say that, let me look to make sure it's actually recording it is. I did it. So this would be part of the podcast or you can always come back to the Facebook page here and listen to it again. Rachel, you are late. Do you have a question? Because I got a bail. I'm gonna go. I'm gonna go make dinner. Arden's gonna come over to the movie, and I'm gonna have a whole little thing for I'm hanging out, Rachel, I'm giving you time, Rachel. Yes, did anyone asked about nighttime spikes due to growth hormones, I find them so hard to get down. They are hard to get down because you are not using enough insulin. They're terrible. And they're scary to Bolus. I'm sorry, I'm warm. They're terrible. And they're scary to Bolus for because you want to go to sleep. Everybody just wants to sleep. When your blood sugar is too high, you don't have enough insulin. So you need more. It sucks because you kind of can't plan for it. You don't know when it's gonna happen. It'll happen like two or three days in a row, then it won't happen again. I always just try to wake up in the morning and think at least

Unknown Speaker 1:03:36
she's getting taller. Yay.

Scott Benner 1:03:39
It sucks. There's no rhyme or reason I would use a combination Basal Bolus on something that I knew was going to be really difficult like that. And, and like I've been saying the whole time you can Bolus, you know, you got to be a little aggressive with the bonuses. you'd much rather stop a low because think about what's happening to you with these highs. It's going up and staying up for a long time. Right? That's not the time to be scared with the insulin. If you should get low afterwards. I would much rather address the low than fight with the high online. It sucks. It really does. I'm sorry. The good news is they won't grow forever. It is very hard to predict. Rachel Rachel says it's hard to predict. They don't always happen at the same time. They sometimes will happen four nights in a row and then not happen at all. You have a CGM, I hope and just he just got to react as fast as you can and and trust what you've seen the last time like if it happened Tuesday night, and Wednesday night you get woken up with the same sort of rise. I would be as aggressive I would think back to the night before and how much insulin did this take and I would I would get involved in getting as much of that insulin as I could. also keeping in mind how long has your pumping on if you're pumping, you know you might have a first day of the pump might might be better than the third day of the pump when the site starts to get a little old. Yeah, Rachel, um, I don't know where you have the high threshold. But I was just telling everybody, I have mine at 130. So it may be if you give yourself the ability to react sooner, it won't get as high, you can be a little more aggressive a little sooner. And stop the stop the spike a little bit. This is all Rachel, go back and listen to this when it's over. But this is all about just insulin and timing. It's not really I wish I could say the diabetes was really complicated. But once you understand how the insulin works, and that most of this is about the amount and timing of the insulin, it is at least easier to diagnose things because a lot of the variables here's something I didn't say before. People spend way too much time wondering why things are happening. Oh my God, my kids blood sugar went up. I don't know what to do. Why is it because of food is because who cares? Why more insulin?

Unknown Speaker 1:05:53
Right?

Scott Benner 1:05:55
What Why do you care? Figure it out later. So that next time maybe you can get ahead of it. But I see too many people online spending hours putting up graphs going What could this be? What could this be? I know what it definitely is? It's a high blood sugar. So insulin, right? And so I think similar to that, he says how palsy gonna be Oh my god, you'll be dead. By the time he gets done growing, Rachel. I mean, at least exhausted like a zombie, right? I'm sorry. It sucks. It'll be Spitz in spurts. It'll, he'll stop again. It won't last that long. I know. It sucks. I mean, I know better than anybody with these dark circles under my eyes like literally like they're tattooed on at this point, I can't get them to go. Is novolog works quicker than others does. novolog work where I think insulin works for different people in different ways. Arden doesn't use novolog she uses a pager. We used to use no alive. But we see a lot of double arrows up dalaras down with no vlog. I don't ever see a double arrow ever with a pager. And I find it to be a little smoother acting. It definitely works better for artists than anything we've tried so far. Which is the only thing I would say there is is that insulin is not the same for everybody. And you may have to try a couple different. A couple different brands to figure out which one works best for you. All right, guys. Say goodbye. So I can hang up, say like Merry Christmas or Happy New Year. And then I'll know everybody's like on target. Now if you guys listen to the podcast, please subscribe. So when the new ones go up, and then tell people about it. Because that's how it grows. And it has grown really well. And hey, Terry, how are you? Oh, Tyree. You're I'll pull something up to tell you real quick. I don't usually talk about it quite like this. So the podcast will be three years old in a couple more weeks, just 353,000 downloads. That is pretty cool. So I at this point receive an email almost every day that talks about I learned to be bold, I've gotten rid of my fear. And my agency is going down and my my blood sugar is less valuable. I promise you go back, listen to the podcast. Take your time to listen to these conversations. Eventually this information builds up and it becomes a repository for you. And then when you're having these experiences you don't sit around wondering what to do you just instinctively know and that really is what we're talking about. Like how do you know how do you know because eventually the experiences build up. So Alright guys, I love you guys. I love that you guys are being so bold, Merry Christmas to everybody. Happy New Year Happy Hanukkah, if you were doing doing the Hanukkah thing, which I think is over or almost over. But thanks so much. Bye guys. The Juicebox Podcast is going to be sponsored again in 2018 by Dexcom and Omni pod these are the tools that we use here to help Arden's Awan see stay what has now been between 5.6 and 6.2 for four years, I vouch for these companies like no other go to my omnipod.com forward slash Juicebox Podcast dexcom.com forward slash juicebox if you want to learn more, we're please use the links in your show notes because that sort of helps us a little bit. I've been getting a lot of great reviews on iTunes from you guys. Thank you very much. That is really fantastic means a lot to me. I really love getting all your notes over the holiday season talking about all the success that you guys have having really just really helped me have a great holiday season. I appreciate it. All the interviews are coming. We got a whole bunch of them lined up episodes are going to come every week in 2018 and all I ask from you all I asked from you in return he's to share the podcast with someone else and listen all the way through and subscribe and don't say anything mean about me online. And I mean that's pretty much all I'm asking unless you want to bold with insulin t shirt then you should go to Juicebox Podcast comm where I will actually ask you for money for the T shirt.

Unknown Speaker 1:09:48
I'll see you next week.

---

Donate

The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!