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- [00:00]
A
Here we are back together again, friends, for another episode of the Juice Box Podcast.
- [00:15]
B
Hi, I'm Rita. I've been a type 1 for 22 years and I have a type 1 daughter too.
- [00:22]
A
If this is your first time listening to the Juice Box Podcast and you'd like to hear more, download Apple Podcasts or Spotify, really any audio app at all, look for the Juice Box Podcast and follow or subscribe. We put out new content every day that you'll enjoy. Want to learn more about your diabetes management? Go to juiceboxpodcast.com up in the menu and look for Bold Beginnings, the Diabetes Pro Tip series and much more. This podcast is full of collections and series of information that will help you to live better with insulin. If you're looking for community around type 1 diabetes, check out the Juicebox Podcast. Private Facebook group juicebox podcast type 1 diabetes but everybody is welcome. Type 1 type 2 gestational loved ones it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort or community, check out Juice Box podcast type 1 diabetes on Facebook. Nothing you hear on the Juice Box Podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your healthcare plan. A huge thanks to my longest sponsor, Omnipod. Check out the Omnipod 5 now with my link omnipod.com juicebox you may be eligible for a free starter kit. A free Omnipod 5 starter kit at my link. Go check it out. Omnipod.com Juicebox terms and conditions apply. Full terms and conditions can be found@ omnipod.com juicebox Today's episode is also sponsored by USMED usmed.com juicebox or call 888-721-1514. You can get your diabetes testing supplies the same way we do from usmed.
- [02:14]
B
Hi, I'm Rita. I've been a type 1 for 22 years and I have a type 1 daughter too.
- [02:21]
A
Rita, how many children do you have in total?
- [02:24]
B
One.
- [02:24]
A
One child. How old?
- [02:27]
B
She's now six years old.
- [02:29]
A
Oh my gosh. How old are you?
- [02:31]
B
I am 41. Yeah, 41.
- [02:34]
A
You aren't sure?
- [02:35]
B
Oh, yeah, I'll be 42 kind of. Well, soonish. But I'm still 41.
- [02:42]
A
Yes, it's very telling when a person reaches an age where they're like, you know, I think I'm almost and I don't remember a birthday, but it feels like it's coming close. 40. Oh really? Did you have a. Oh, I have a lot to ask you About. Let's start slow. How old were you when you're diagnosed?
- [03:01]
B
I was 18. A few months before I was. I turned 19, but I was still 18.
- [03:06]
A
And I hear your accent. You're from Long Island, New York. Is that correct?
- [03:09]
B
No, I'm from Portugal. In Europe. On the other side.
- [03:13]
A
Very nice.
- [03:14]
B
But I had an English. A Canadian English teacher for many years, so maybe that's why I was teasing you.
- [03:21]
A
Yeah, I knew you.
- [03:23]
B
You know, I'm not native speaker. Yes.
- [03:25]
A
Long islands in my head, because someone from a pretty big hospital out there reached out the other day and asked me if I'd come out and give a talk, and I thought, oh, I don't want to drive over that bridge, but okay. So I think I might. Nevertheless, you're 18 when you were diagnosed. Are you from a big family or. No?
- [03:45]
B
No. Like, I would say a small family. I was also an only child. A couple of. A few cousins, but not a big family.
- [03:53]
A
Okay, okay. Anybody else in the family have type 1 diabetes or other autoimmune issues?
- [03:59]
B
No, no type 1 and no. No other autoimmune. My father had type 2, but he was diagnosed later, like in his 50s, but no other. So no. No autoimmune and no type one at all.
- [04:14]
A
I wonder if I made this podcast 20 years from now, and I said to somebody, you know, that same question when they got to their father, instead of saying my father had type two, if they'll say my father was on a glp. Yeah, maybe. Yeah, interesting.
- [04:27]
B
But then you. You'll also get Some probably type ones on GLPs, too, and maybe the difference won't be, I don't know, so relevant anymore of type one or type two. I don't know.
- [04:37]
A
Yeah, maybe. Yeah. Actually, that it reminds me in case she ever hears this episode. Arden, I'm really proud of you. I saw that you gave yourself your shot last night by yourself. That was really cool. There was something in my garbage can this morning, and I was like, oh, look at Arden fighting through her needle phobia. Really cool. Let's see. Rita, how about you? Do you have any other autoimmune stuff?
- [04:59]
B
No, no, just a type one. No. Well, not yet, at least, but no, I don't.
- [05:05]
A
Never say never. That boy that you made a baby with, does he have any on his side of the family? Any autoimmune at all?
- [05:11]
B
No, no, not that we know of. At least. No autoimmune and no type one specifically.
- [05:17]
A
Also, Rita, you have a super. A super ability to make babies with type 1. Diabetes? You made one baby, it got diabetes.
- [05:22]
B
Yeah.
- [05:23]
A
Look at you.
- [05:23]
B
I guess she got it from me.
- [05:25]
A
Oh, do you think of it that way?
- [05:27]
B
No, I don't. No. No, no, I don't. But, yeah, I mean, she had a higher likelihood to get it because one of the parents is type one. But I didn't consider it actually before, like, when thinking about having a baby or so. So that was not part of the, say, whether the kid would get type one or not. I always, I guess, assumed the likelihood was very, very low.
- [05:50]
A
Right.
- [05:51]
B
And I just got, I guess, the, you know, the short straw.
- [05:54]
A
You drew the straw, huh? You born and raised in Portugal?
- [05:58]
B
Yes.
- [05:59]
A
Okay. What was it like growing up with diabetes? Was it different, like being an adult, a young adult with type one there than you hear people on the podcast talking about it in other places?
- [06:09]
B
So I was diagnosed, you know, like, 22 years ago. So things were so different from today. I was at university. I had started maybe four or five months before. I was not admitted to the hospital. So I was. I remember when I got the blood, so I felt really tired. And at some point I understood that this is not normal. Like, I couldn't go up a flight of stairs without, you know, feeling like I had run a marathon or something. So at first it was kind of progressive. You don't feel it coming. But then. Yeah, then it goes really quickly. The symptoms. I lost, like, well, a lot of weight. I lost maybe 5 kilos in a week or something. Oh, sorry, you don't do kilograms. I don't know how much that is in pounds, actually.
- [06:53]
A
Well, you're asking the wrong guy, because I was asleep during that class. And we only did it here in America for like a year and a half. Then everybody gave up.
- [07:00]
B
I don't think here we learn pounds even. So it's £11. I was just Googling that. So I. I lost kind of 11 pounds in about a week, a week and a half. And. And that was right before diagnosis. And so I. I had, I guess, a very typical diagnosis in the sense of the symptoms. I had so very thirsty, very tired. I. I was not very hungry like some people are. And then my blood sugar, fasting, it was in the 300s. I obviously had ketones, but I was not in DKA and I was not admitted to the hospital. So I. At the time. So I. I was studying in the capital of Portugal, and my hometown is like an hour away. So I stayed home for a week, clear out the ketones. And then I went back to university.
- [07:48]
A
Is Lisbon the capital Is Lisbon is the capital. I didn't mean to interrupt you. I just was so happy that I knew I wanted to say it.
- [07:56]
B
You do. You do great. And. Yeah. So that was it. And then I started on. Well, nph, I guess at the time, for a little bit I used. So I was on two shots a day, you know, like the exchange kind of thing or slight. Not even a sliding skill because I. So I had to eat at certain determined times, more or less, you know, a certain amount of food.
- [08:19]
A
Yeah, that's the way Jenny talks about it when she was a kid. Right. Yeah. What year was this?
- [08:24]
B
So this was 2003.
- [08:27]
A
It's interesting.
- [08:28]
B
Early 2003.
- [08:29]
A
You know why that's interesting? Is because I was just writing something last night and I had to look at a lot of dates. And it's funny because I characterized the late 80s in America as a time where people were just realizing maybe there was a better way than mph and regular. But some 20 years later, that was still how they started you off.
- [08:50]
B
Yeah, but I think they wanted to. So what I understood from the doctor at the time. So the. Well, endo. But he was like from internal medicine, the. His specialty. Because here you can have like. Like both specialties treating type ones. So. So he. They wanted to start me off on insulin slowly, so I wouldn't go down very quickly. That's what I understood. But I. So then I was on two shots a day and then maybe a month after or something, it switched me to something called Mixtar. So it was like a mix of slow acting and fast acting that you would also take twice a day, I believe so morning and evening. Then the honeymoon kicked in and I was actually off insulin first only in the evening for like a month. And then a month after, I was totally off insulin for another month or a month and a half.
- [09:45]
A
Do you recall that time? Can I ask you? Did you. Was that confusing or was it expected?
- [09:51]
B
I wasn't too happy about the honeymoon period. I guess not. Not when I was off insulin. Well, maybe because then I. For me, for example, like giving shots, it was very difficult. I Like, I hated needles. I still hate needles. But I. I kind of learned then how to deal with that, I guess. But with the small needles, I guess at least. So for me to have to do it like, you know, for a month and a half or two months, and then having to stop completely, which had. It's a good part. But then going back to it again so you don't create kind of that routine in. In care. I didn't mind pricking my finger. So that was okay because I didn't see the needle. So for me, it was like seeing the needle. But then on top of that, later, when I resumed insulin. So those couple of months later, I would get lows, like really low. And they would, they would take time to, to go, to come back up. Especially then when I started on a humilog, like later, way later. And so that wasn't, that wasn't good because then I was having, you know, like sometimes two, three lows a day. And, you know, if I'm sure you've heard this so many times, like, when you're, when you're diagnosed, it's like. And the doctors explain things to you. It's like, oh, hypoglycemia is like this big monster. You don't want to go low. And then you go low the first time or first couple of times. And I told my doctor, I used to speak with him, like every week, at least on the phone for the first few months. And I said, well, I had a low. Like, I felt this, I had sugar. And he said, yeah, okay, that's normal. I was like, really, like, you're really, like, you tell people that, you know, it's like lows, these bad things, avoid them almost at all costs. And then it happens and they go, yeah, sure, that's normal. That part wasn't so nice. So the very, the variation, what was nice is that I was like, I remember pricking my finger, say, for example, before lunch. I could be like 160 or 180, and then I would eat, break it again two hours after, and I was 80. So kind of, that kind of stability, that easiness with the management, meaning having good numbers, even off insulin, that part is good. But then the resuming insulin parts, I was not very happy with that.
- [12:17]
A
Right.
- [12:18]
B
And maybe looking back, I guess I should have taken more advantage, let's say, of my honeymoon period.
- [12:25]
A
What do you think you should have done? Gone on a major vacation?
- [12:29]
B
No, but like, you know, allowing myself to eat things that I, that I did. And so I remember a diagnosis. Like a nurse, she told me, yeah, okay, you can eat sweets, like when you want, but just be mindful that if you eat something sweet, because I was on these two shots a day, right, Your glycemia may be higher for like a few days after that. And I thought, well, like, you know, a few days of higher glucose and just for something sweet, maybe the trade off is not enough for me, you see? So I guess during that time I kind of stopped myself from, you know, being more flexible with eating some things and maybe I didn't need to have done that in hindsight.
- [13:18]
A
How was the transition of care to your next step like was the next step after the the mix? Was it, you know, humalog, that kind of thing? Were you counting carbs then? Was that an easy transition? I have always disliked ordering diabetes supplies. I'm guessing you have as well. It hasn't been a problem for us for the last few years though, because we began using usmed. You can too usmed.com juicebox or call 888-721-1514 to get your free benefits. Check us Med has served over 1 million people living with diabetes since 1996. They carry everything you need from CGMs to insulin pumps and diabetes testing supplies and more. I'm talking about all the good ones. All your favorites, Libre 3, Dexcom, G7 and pumps like Omnipod 5, Omnipod Dash Tandem, and most recently the Eyelet pump from Beta Bionics. The stuff you're looking for, they have it at usmed888-721-1514 or go to usmed.com juicebox to get started now. Use my link to support the podcast that's usmed.com juicebox or call 888-721-1514. This episode is brought to you by Omnipod. Would you ever buy a car without test driving it first? That's a big risk to take on a pretty large investment. You wouldn't do that, right? So why would you do it? When it comes to choosing an insulin pump, most pumps come with a four year lock in period through the DME channel and you don't even get to try it first. But not Omnipod 5. Omnipod 5 is available exclusively through the pharmacy, which means it doesn't come with a typical four year DME lock in period. Plus you can get started with a free 30 day trial to be sure it's the right choice for you or your family. My daughter has been wearing an Omnipod every day for 17 years. Are you ready to give Omnipod5 a try? Request your free starter kit today at my link omnipod.com Juicebox terms and conditions apply. Eligibility may vary. Full terms and conditions can be found@ omnipod.com juicebox find my link in the show Notes of this podcast player or@juicebox podcast.com.
- [15:43]
B
So yeah, so actually then after those, you know, two shots a day after being off of insulin. Then Lantus was being introduced here at the time, this doctor, he told me, look, I have Lantus at the hospital because so it was being introduced. But the way they do things here is that they were still to the pharmaceutical company and the government, they were still deciding on the price of insulin because we, well, we don't pay for insulin here, it's the government that pays. And so they were trying to negotiate a price for the pharmaceutical company to sell the insulin to the government. And while they were doing this, and this still, I think took many months, they were giving Lantus to doctors at some centers and hospitals. This doctor, he told me, look, I have here this new insulin. I think it would be really good for you. Do you want to give it a try? And I said yes. And then I ended up being on Lantus only for one year, which is I guess also not the most typical case. So transition to, let's say a regular regimen of insulin, it's happened way later, so maybe after a year, a year and a half, and it wasn't all sudden. So then I started on Humalog, but just for some meals and not others, you see. And then once it started going up my numbers then I, I gradually introduced Humalog for those until I was on the kind of the normal setting.
- [17:18]
A
So hindsight, you had lotta. Probably, right?
- [17:21]
B
Probably, yeah, yeah.
- [17:23]
A
I mean it took, it took a couple of years for you to need your, your. Well, not a couple years, but over a year, I guess.
- [17:28]
B
Over a year, yeah. For a full. Yes. So I, they did the, the antibody labs and I was, I guess, positive for. If not all of them. For most of them.
- [17:37]
A
Right, right.
- [17:38]
B
But you didn't hear about lada when.
- [17:41]
A
I was diagnosed, how long did you, I mean, were you doing injections?
- [17:45]
B
Yes.
- [17:46]
A
For how long did you do it? That.
- [17:49]
B
For most of my, let's say diabetic life. I've been on a pump now for maybe eight years or almost eight years, but for all the rest I was on shots.
- [18:01]
A
What kind of pumps are available for you?
- [18:03]
B
So here we have Medtronic, we have tandem for last year, year and a half. And my first pump was combo Aqua Check combo, which I think it was discontinued in the US way earlier than here. But I was on the combo until a year ago and then a year ago I was switched to tandem.
- [18:25]
A
Were they still making it all that time or were they just making the supplies for it?
- [18:29]
B
I don't know. They were, so. I don't know. I. So I put the combo or I was on the combo for almost seven years. Yeah. that time. So when I started it was like just, you know, like normal pump here. So you. And at that time you had Echucheck, that echo check pump and Medtronic. So Medtronic had always been here, I think. And then Tandem only came maybe two years ago. But it's only now that it's being like really rolled out in higher.
- [19:03]
A
Yeah, it takes them a while to get the business on, on its footing and get stuff working.
- [19:08]
B
Yeah. And because of the way it works here to get a pump also.
- [19:12]
A
How does it work?
- [19:14]
B
It is through the government. Let's say the system actually changed a year ago and now it's much easier. Now doctor can prescribe you a pump of your choosing, let's say that depends on the centers. And then you need to wait for the training and then you're put on a pump, let's say, to simplify. But before that it was kind of a centralized tender procedure. So every year there would be a tender, then the different companies would apply, but in practice there were only two companies applying. So Medtronic and before Accucheck. And then one of them would get the. Would win that tender and then the tender would be for I don't know how many pumps, ex pumps for the whole country. And then they distribute it to the different centers. Now the issue is you had way more people on the waiting list to get pumps than pumps available.
- [20:15]
A
Yeah.
- [20:15]
B
So you've had you, you have people actually that have been waiting for a pump for many, many years. Things are now different for the last year and getting better. So. But, but that, that's it. So you can of course buy a pump privately, but the costs are. Are huge. So basically only a very, very reduced number of people are able to do that. You know, if you get it.
- [20:43]
A
I'm sorry, I'm sorry. Do you know what the cash price would be for you if you had to buy it yourself?
- [20:47]
B
Yes. So the pump itself, I think they were about €3,000, €4,000, so maybe around US$5,000. But then the issue is like the consumables, right. The cannulas, etcetera, the cartridges, etcetera. And that would be maybe around €200 per month. So if you multiply that for, you know, a year or two years or three years, then it's a lot of money, especially for, you know, the typical salaries here.
- [21:21]
A
Yeah, I was going to say, can you give people a little bit of perspective? Like that amount of money, US$5,000 is it a. I don't. I'm sorry, what percentage would it be of, like an average salary there?
- [21:34]
B
Oh, so I can tell you, like, minimum salary here in Portugal. It's not even $900. So it's not even a thousand US.
- [21:44]
A
Dollars a month or week?
- [21:46]
B
A month. A month.
- [21:47]
A
A month. Okay, so you're talking about five or six months worth of salary to buy an insulin pump.
- [21:52]
B
Just to buy the pump. And then for the. For the cannulas, you know, the cartridges, etc. That would be like €200.
- [22:02]
A
I misspoke a second ago, too. What you said like €3,000. 500. 5,000American dollars, but still like three or four months of salary to buy the pump and. Geez, yeah, a pretty big percentage of your monthly income to just keep the pump running.
- [22:17]
B
Exactly. So. And that's why, you know, I'm sure there are people that have bought pumps like that, but it's. They're very. It's a very low, low number. So like 90, probably 99%. I don't know the exact numbers of people that are in the. Well, in the national system for. And there you don't pay anything. So neither for the pump nor for the. I don't know the word in English, actually.
- [22:44]
A
The. So the stuff that you set, the.
- [22:47]
B
Yes. Yeah, yeah, yeah. But do you have like a name for all of those things?
- [22:51]
A
Pump supplies.
- [22:52]
B
Yeah, the pump supplies.
- [22:53]
A
Exactly.
- [22:54]
B
So for all the pump supplies. Yeah.
- [22:55]
A
So I did. I looked here just because I think it might be interesting to people. Roche stopped making Rita's pump the combo in 2017 in America, and they made it for five more years overseas and other places. It's pretty interesting. Also, I want to point out to people that I've been trying out Google gemini as an AI recently, and I hadn't been on ChatGPT in a while. I opened up ChatGPT to ask it that question, and it was like effusively said good morning to me. I think it knows I'm cheating on. Was like, hi, Scott, welcome back. And I was like, oh, what does it know?
- [23:31]
B
It knows more than you think, for sure.
- [23:33]
A
I mean, maybe is it gonna turn to me one day and go, I know you've been touching your keys with Gemini. So then it made. It made me open it up in Gemini. They are different. Like, ChatGPT is good at inferring what you mean in conversationally, and Gemini is a little more specific, which. I don't know, one's better or the other. I'm just. Anyway, just bringing that up. Okay.
- [23:52]
B
I heard recently that Gemini 3 or some latest version is very good, but I haven't used it.
- [23:59]
A
I've. I've coded. I mean, vibe coded. So like, you know, not. Not really coded, but a couple of things that I'm hoping to use on my website next year for searching. I did it in like an hour and a half on Gemini. I sat down with it to learn how to use it over the weekend and just kept talking to it about something. And I got it to the point where I had a. An instruction block. And if you dropped in the instruction block and then just a link to a recipe, I had fine tuned the instruction block well enough that it would break the recipe down and then tell you how to bolus for it and consider fat and protein.
- [24:34]
B
Oh, that's great.
- [24:36]
A
Just like that. I don't know if I can make that available ever, but maybe I will one day. I guess I just say it's for education purposes and let you guys look at it because it really is just specific instructions to the model about how to handle the information. And I didn't want you to have to drop in the. Even the recipe. I'm like, go to this web page, find the recipe, see how it's cooked. Like, keep in mind, like I gave it a whole bunch of. Anyway, it's really. It took me like four hours to figure it out. It's pretty cool.
- [25:06]
B
That's. That is. Sounds pretty amazing.
- [25:08]
A
Listen, if it doesn't kill us, it's going to be awesome, Rita.
- [25:11]
B
Exactly. Exactly.
- [25:13]
A
Which is exactly what I should have been thinking the day I got married.
- [25:18]
B
Maybe it's going to be awesome for a while and then it will kill us in the end.
- [25:21]
A
But like the marriage. I get what you're saying, like, exactly. I'm married. I know you're talking about. So you live what you would consider, like, I mean, I guess it was tough, right, because you did have the needle phobia. But did you get pens at some point?
- [25:38]
B
Well, I started with pens.
- [25:40]
A
You started right away with pens. Okay, good.
- [25:42]
B
Yes. Only when I used lantos from the hospital. So there were no pens yet because it was not readily available at the pharmacy. Then there were like. Then I used syringes. Yeah, pens are the standard here.
- [25:55]
A
Okay, so pens mdi for a long time. You got a pump. Did you enjoy a pump over the pens?
- [26:01]
B
Oh, yes, yes, yes. Tell me why I really wanted to get a pump.
- [26:06]
A
Tell me what it did for you.
- [26:07]
B
Like, like being able to do more things. So. And before. Yeah, I think what really changed things And I guess many of your guests have said that it was the. The sensors. So I started on the sensor before the pump, and that that was a total game changer. Yeah, so there was with. I started with Libra. That was the sensor that was available here first, and it was, yeah, amazing. And then I actually had bad, A bad kind of dermatitis, allergic reaction to the adhesive some months after I started, so I really had to stop using it. And then a few months after I, I got a Dexcom and then I started using Dexcom after that. But the sensor, that was like, amazing. And for the pump, it was just being able to get more. More control, but in the sense of not better numbers, because I had good numbers then with pens, but being able to tweak things as you. As you want to be more flexible in what you do. So that was like the upside of the pump for me.
- [27:22]
A
I think maybe it's possible that people who were diagnosed in a more modern time and have always had a sensor might not have full context for what it would feel like to see the variability and the almost. You hear people talk all the time about the unknown nature of what's happening to them. And, you know, when you're just testing a couple of times a day or, you know, even, you know, further back, when you weren't even lucky enough to test, you know, at home that much, when, when that's the situation, I think the feeling of out of control and unknowable must be overwhelming. Right? And then, you know, you're just. You're fighting constantly, you know something's wrong, but you have no idea how to pinpoint what it is. And even if you could pinpoint it, how would you know how to adjust it? And now today, you see your CGM, you see your blood sugar 24, 7 in real time, just about, you know, just about an actual real time. And now you can make little. Little, you know, fine tunes and, and tweaks the things. I think I'm very sensitive to that today because yesterday Dexcom announced they're not going to make the G6 anymore. And they're, you know, it's being pulled. And most people are like, you know, hey, I use a G7, it's fine. Some people use a G7, have trouble with it. But while I'm watching these conversations happen online, I got upset and, and I think I should try to be clear because, listen, you might hear this and say, well, yeah, Dexcom buys ads on Scott's podcast, so listen to them now. Be positive about it. But let me be. First of all, they all buy ads on the podcast. So, you know, trust me, if I lost one or the other, I'd be okay. But it's not why. And really, it's my perspective and my. And as I wrote about it last night, I'd like to share with you, Rita, like that my perspective is this, that in the late 80s, my best friend gets diagnosed with type 1 diabetes. He's got MPH and regular an old doctor who never changes how he manages his blood sugars. I don't think even tries to start counting carbs until he's already in kidney failure. And he lived this whole life getting up in the morning, you know, saying, I don't know, I guess I'm going to be this active, I'll draw up this much, shoot it in, do it again. You know, he'd be dizzy before dinner or after dinner. His mood would be variable. You know, I spent my whole life thinking Mike was, you know, he's just a wonderful person, but sometimes you get angry out of nowhere, like, you know what I mean? No one under really understood that sometimes you didn't want him driving at night because he might swerve off the road a little bit and know you. We all looked at him like, oh, Mike's quirky. Like, Mike wasn't quirky. Mike's blood sugar was all over the place and no one knew anything about it. Right?
- [30:06]
B
Yeah.
- [30:07]
A
You know, he's talking with his wife one night about what to have for dinner and he stands up and says, I'll make it, and stands up, falls over, and his heart fails and he's gone. You know, he's just. Mike's just not here anymore. And I'm watching people online talk about, you know, you're going to move the G7 to 15 days. Mine doesn't even make it 10 days. And all I could think was, boy, it would have been great to give Mike a sensor that didn't always last 10 days. It's all I could think, you know, like. And I know that doesn't address their issue. And I'm not saying that companies, you know, every one of them shouldn't be striving to do their absolute best. And I don't know, I just don't. I mean, this is progress and you don't want it to not happen. So that's how I feel about it now. Also, I'd like to say I feel super lucky. G7 works great for Arden. She frequently wears it 10 days plus the 12 hour grace period at the end with no issue. I think she had one failed the other day on, like, day seven. And recently she had that thing where, you know, you insert it and the wire comes pop it. I. I learned online they call it goosenecking. Like the.
- [31:15]
B
Yeah, yeah.
- [31:16]
A
And you know what? She put it on and she was like, ugh. And she tore it off and she put another one on, and boom. And now she's okay again. And all I'm telling you is you don't want to go backwards and you want to have a tiny bit of perspective for how people used to live, because these companies are. They're private companies. They have capital. A Dexcom could wake up tomorrow and go, look, we have a system in place. We can make anything. We don't have to make these. You know, the shareholders could say, yeah, screw it, it's enough. We got a lot of money. Split it up and let's get the hell out of here. Like, I don't know, there's a million things that could happen. Just be grateful someone's out there doing it. If they've had problems, and they obviously have, and so has, you know, so is Freestyle, you know, with the libre, they'll work it out. It's a company full of human beings. They're trying to sell a sensor that measures your glucose. They're going to keep working on making it better. They didn't see a problem and just go, oh, oh, well. But in the meantime, if you're looking for satiation on the issue, this is way, way better than how Rita grew up, how my friend grew up, how people in the past have been on the podcast have grown up. I mean, I know it's fun to get online and make funny videos about, like, oh, this is me panicking because the G6 is gone, and blah, blah, blah. The G6 is like the eighth iteration of a. Of a CGM. There'll be more, you know.
- [32:34]
B
Yeah. People that are diagnosed, like, today, they just take a lot of things for granted that were not there, you know, like, 10, 20 years ago. So, yeah. Yeah, indeed. Having perspective is. It's good.
- [32:47]
A
It's just important. It's. And so I'm telling the story because I want to try to lend some perspective that I have to people who wouldn't have it. Like, I'm not scolding you. If you were diagnosed eight months ago and your CGMs aren't working correctly. I get where you're at and I understand why you're mad, but, you know, big picture.
- [33:04]
B
Yeah.
- [33:04]
A
A person born now with type 1 diabetes has almost the exact same life expectancy as a person born without it. And that was not the case 10 years ago, 20 years ago, 30 years ago, 40 years ago.
- [33:19]
B
Yeah, exactly.
- [33:20]
A
And it's because of those damn sensors and these pumps, by the way.
- [33:23]
B
Yeah, I, I was going to say, I remember reading in the sugar surfing book from Dr. Ponder that you've also had in the podcast that when he was well diagnosed and for many years after, there was no glucagon, and I remember reading this, like, wow, there was no glucagon. So there was a time that there was no glucagon available. So if you had, if you passed out, your only chance was like if you rub some sugar inside your cheek or, you know, you went to the hospital. And yeah, I was also quite amazed to read that because it gives you perspective, you see. So I was diagnosed 20 years ago. No sensors and no pumps at the time, at least here, but there was already glucagon, so that was never an issue. Right. For me. And as now it's not an issue that for people that are diagnosed now that they have access to sensors and pumps, at least in, in many countries, which is probably not the case everywhere.
- [34:21]
A
Liquid and inhaled insulin, multiple options for rescue glucagon, GLP medications that are significantly reducing people's needs for insulin. I know that some of you are like, that's only for type twos. Trust me, if you think that go find some GLP medic episodes, it's going to be happening. What else? I mean, algorithms that are making automated adjustments every few minutes, a vibrant DIY community. I mean, there's got to be six different DIY opportunities for you to like download an algorithm. You know, Dexcom is, you know, 19, I think, years into making these things. Abbott's making the Libre Medtronic, just, you know, introduced two new sensors or a new sensor and they, and they've got some interoperability with the Libre. Senseonics is making that bettable sensor, the Eversense 365 that you might have heard about on the podcast. You know, they're not the only company to try that. A number of companies tried to make that. They couldn't figure it out. Senseonics figured out how to embed the thing in your skin without your body rejecting it. Like, that's somebody saying we're gonna sink a bunch of money and man hours into trying to figure out a problem. And a lot of them, it didn't work out for a lot of pump companies have gone out of business. Over the years, like, I just, you do not want to wake up one day and decide they, you know, and find out that these companies aren't interested in doing this anymore. And I'm not saying don't complain about it because you don't want them to stop doing it. I'm just saying this is a really. You have no idea if you're more newly diagnosed, how wonderful all of this is and how, what a positive impact it's having on your life. So if the sensor fails, I mean, the way I handle it is I call it in and I say to myself, I'm glad this stuff exists now. If I had some horrible experience, I would maybe feel differently. If I had, if Arden had terrible allergies to the adhesive, I'd probably be like, well, this thing, it's no good for us. Like, and it's hard to be grateful at that point. I get it. But I don't know.
- [36:23]
B
Anyway, yeah, as you say, it's, it's good to have some perspective. But people can complain. They will always complain. But I mean you can complain in a way that you're also acknowledging the, let's say the greater good that these companies are, are producing end of the life. We have at least in kind of Western societies living with, with type one today, which is very different probably from other world regions and from the past.
- [36:50]
A
Yeah, I think that what got me and I certain, it's, it's tough because I don't, I'm not trying to, it's buried in a comment somewhere. I don't think anybody's going to see it. And it was the phrasing that the person used because there was, there's a, you know, a post and people are like, you know, they're, some of them are pearl clutching and some of them are trying to be funny and some of them are really worried, oh my God, G6 is going away. And I just typed three little birds because I was, you know, I was trying to reference the Bob Marley song and because I think everything's going to be all right. And this person says, well, I hope the three little birds told you that this isn't true, that they plan to fix what's wrong with the G7. And then it was this before they shove it down our throats. And I thought that's how you characterize this life saving device as it's being shoved down your throat. Threw me off. Like it really did. Like, I don't know, maybe I grew up differently or maybe my experiences lend to a different perspective. Thank you. Every one of these companies who does this, thank you so much again, you'll be like, oh, sure, they buy an ad. I could sell the ads to somebody. It's a pretty popular podcast. I could just sell the ads to somebody else. I sell them to diabetes supply companies because I figured you guys might help you. You know, you can get sheets. You want to get sheets. Cozyearth.com use the offer code juice box. Save 40%. There's other ads where I make. I make ad income. And maybe they didn't mean it that way, and maybe they're just angry or scared, and it's all fine with me. But that. That was the phraseology that came to this person's mind. It both made me sad for them because they're obviously scared. And it made me sad in general because I thought, like, this stuff's. I don't know, like, I don't see it as being. I've had problems with diabetes technology before. I have never thought that somebody was shoving this garbage down my throat, you.
- [38:40]
B
Know, and people have choices, right? So if you think, you know, one sensor is not good for you, you may go to another one, if possible, in your inner situation. And so that's good to have a choice, right? And for example, on dexcom, I love dexcom, but, for example, I did not know about that they would discontinue the G6. I use the G6 because the G7 doesn't work for me, but it works wonderfully for my daughter. So my issue with the G7 is that it works well for the first roughly 24 hours, and then it just starts. It just says low or lowish and does not respond to calibrations. And it just goes low, low, low. And I've used, like, over, I don't know, 20 sensors, 20 G7 in different places on my body. And it's always like, out of those 20, maybe I got two that were reasonable. So they did not make it to the end of the 10 days, but maybe they lasted eight days with kind of reasonable, with reasonable numbers. But for all the others, it says low.
- [39:50]
A
So then you're a perfect person to ask about this. Then. Then G6 disappears. What do you. What do you. What's your plan? What are you going to do?
- [39:57]
B
Yeah, that's a good question. I hope they. I hope they do something with the G7, that it makes it work for me. So I don't know why it doesn't work for me. I haven't seen other people kind of talking about the same type of issue, but maybe there are. And it would be nice to know there are others that this happens to. But I. Yeah, I. I don't know. I won't be happy, but I'll. I'll live, you know. So I guess if. If it would be for my daughter, I would be more upset. So if.
- [40:26]
A
And I. I don't think you shouldn't be. And that's why also, I'm not just saying don't worry about it. Of course worry about it. My expectation here is, is that if it is a thing that is impactable, it's going to be impacted. The company's not just going to look up and go, oh, well, we lost a chunk of people who can't use G7, so I guess we'll stop innovating. I guess we'll stop trying to figure it out. Like, it's my expectation. I have no idea about this, by the way. I'm genuinely just making this up. But, like, I'm putting myself in their perspective. And I don't think that there's just a bunch of people in a room drinking Diet Coke, watching television, going like, oh, well, you know, I imagine they're working on trying to figure out why it is that the G6 works well for you and the G7 is not. I listen, I could be a million percent wrong. We might go back to this one day and go, well, Scott, you were wrong about that. They wrote us off. My expectation is that we wake up sometime from now, I find you, Rita, and you say to me, hey, I don't know, the G7 works now for me. And we'll. You know what I mean?
- [41:24]
B
That day comes soon. Yeah, yeah.
- [41:26]
A
And I certainly do, too, because I also don't want to make. I think I've been very clear about how important I think a CGM is for people, but this is how progress happens. Like, we're not a bunch of. Isn't it funny, Rita, that AI comes out and people say, like, you know, I think we're going to be able to use the AI to, like, fix problems more quickly. And people go, AI scary. We don't want it. And then you say, well, you know, there seems to be a problem between how this sensor work and that sensor works. And somebody says, well, hurry up and fix it. Like, which do you want exactly? Like, do you want hurry up and fix it or do you want. No, no, no. Like, let's leave it on people and we'll see. Like, you know what I mean? Like, I don't know how dexcom is going to work this out. I am certainly not an engineer or a smart person, but my expectation is, is that they look at data, a lot of it, they crunch that data and that is how they figure out how to tune that algorithm so that it works better for you. How they figure out how to make those sensor wires so that they work better for more people. It's how they figure out how to, you know, adjust adhesives so it sticks, but doesn't make people break out. They're trying to find a balance in there and I don't imagine that they're sitting around not trying right now. Like that's my expert. And I don't just, I don't mean to single them out either.
- [42:38]
B
Yeah, like for the other companies too.
- [42:41]
A
Yeah. Listen, Tandem just rolled out an update to their algorithm. Right. Gave people extended bolus in automation and some other things.
- [42:50]
B
Yeah.
- [42:50]
A
Omnipod is in a trial right now trying to get the Omnipod 5 to the next generation. You know, Libra is having some trouble. You think they're all just going to like throw their hands up and go away? Or do you think they're all magic? They're just regular people at their jobs, you know what I mean? Like they're trying to figure it out. It takes time. So it sucks that it takes time.
- [43:10]
B
But I mean for me that's, it's kind of obvious. They also, they're a company like the. Well, Dexcom and the others, they're all companies so they have to make decisions that are not going to please everybody. But in the grand scheme of things, surely things would get better for most people that use those products, even if that excludes some because for some reason it doesn't work for them. Yes, the G7 currently doesn't work for me. It doesn't make Dexcom like, or some other company a bad company just because of that.
- [43:43]
A
You bring up the exact reason why I wouldn't want to be in politics. Like, because everyone singularly feels like the thing is working for them or failing them. And then you've got to be a person who's looking at greater good. You know, the masses saying, listen, I think we're covering as many of these people with this group thing, whatever we're trying to help them with as we possibly can. What it must be like to be a. Politicians are, you know, listen, they could go about things differently. I wonder what it would be like to be a politician, to put something in action that you're trying to help, let's say 10 million people with. And you get done at the end of the day and you say to yourself, oh my God, we figured it out. We helped 8 million of these people. We're really not helping 1 million on this side of the problem and 1 million on that side of the problem. But we found a way to help 8 million people and then spend the next day getting bitched at by the 2 million that aren't helping. You must be like, oh, yeah, what am I going to do? Right? And it's the same thing. And by the way, again, not that those 2 million people in that example don't have a complaint, they obviously do. But you got to put yourself in other people's shoes sometimes. And you're an adult, you're doing it. You're saying, look, the G7 doesn't work for me. This is. Could is going to be problematic. I'm going to have to figure something else out. This is scary. And, But I don't know. In a word, I'm talking to you, Rita. I don't think you would ever say to me, well, now they're jamming this down my throat.
- [45:09]
B
No, no, no. Well, but I don't know why, Well, I didn't read, you know, that thread or I don't know why they would say that. I don't know. Do people feel that companies are pushing this, these products onto, you know, type 1 patients because there is choice. Like, maybe if you want to go with pump X and that only works with sensor Y, then okay, there's not much choice there. But in the grand scheme of things, there are choices. There are different products. There's not one pump or one sensor only. Right. That it either works for you or doesn't. And of course that, like, people are upset, myself included, if something I would like to work for me doesn't work for me for whatever reason. Even worse, if I don't understand a reason for that, but it doesn't make that product bad just because of that. Because at the same time, it's works wonderfully for other people, for a lot of other people.
- [46:08]
A
Right. I. That's the part that strikes me as odd, is that it feels like an assault on you. You know, if it doesn't, I mean, it's still technology. You know, how many technology, you know, how many, like electrical or computerized things that I've sunk my own money over the years and gotten it home and been like, this doesn't work right? Or it's not doing what I needed to do, or I know it's not around your health, but like, this Stuff is like, you're not just. I said this before, like, this is a mechanical device. It's plastic and metal and whatever else the hell it is, being sunk into a human body. And then. Then they've got to try to find that space where it helps as many people as possible. This is an incredibly complex thing, and that it works this well in just 20 years of production, it's changed generations of outcomes. It gets amazing. And I think that for your own, you know, mental health, like, try seeing it like that a little bit. And then I understand there's macro, micro. Like, you know, I don't know what to tell you. If you are a person who it doesn't help or doesn't work for, the adhesive makes you break out. That's horrible. I can't. I can't tell you how much. I mean, it just breaks my heart that it. That it broke my heart that this person felt this way. But, you know, once you go out into public and you start saying things, well, then it goes from like, you know, like, if that person came on here and had that conversation with me, I'd be very interested in hearing their perspective on it, just like I'm interested in hearing yours. But when you're in the public square and now suddenly you're yelling, this sucks. They're jamming it down our throats, I'm like, I don't know. Like, I'm sorry, it's not going to work for you, but my goodness, like, this is certainly not a thing that's being foisted upon people. Also, go get a pen and a meter. And I mean, you know, you're still way ahead of where Mike was. You know what I mean?
- [47:56]
B
Yeah. Yeah.
- [47:57]
A
Even with a meter in your hand and, and. And 50 test strips and, And a. And a pump that doesn't have an algorithm on it, you're still going to live a long, happy, healthy life. Like, so. I don't know.
- [48:09]
B
It's tough, especially with the level of knowledge that you can have access to today. Right. Which is also very different from, I don't know, 20 or 30 years ago.
- [48:18]
A
Sure.
- [48:18]
B
Like with the Internet, with your podcast, you know, with so many things, so many resources out there that if you're willing to learn, you can do it with pens and a meter and with a pump. Is it the same? No. Is it equally easy or difficult? No, but. But it can be done.
- [48:36]
A
Yeah.
- [48:37]
B
If you have the. The willingness to. To do it and. And to learn.
- [48:42]
A
I agree. Let's move on. I don't want to Belabor this. I don't want to sound. I don't want to sound callous, because I'm not. Time. I mean, I don't know. I know I grew up in a different generation, but people acting like things are being done to them all the time is a little baffling to me, especially in a way.
- [48:59]
B
They were having a bad day.
- [49:00]
A
I hope so. And I hope it's. And I hope it's gotten better. I really do mean that. I. I don't want for that person to be upset or for them to have a problem. I. I just think that. I don't know. Anyway, how do you find the Juice Box podcast made by a guy in New Jersey, in Portugal. Although I did check when you got here, and it turns out that chart in Portugal. So thank you to all of you out there. But how do you find it?
- [49:24]
B
So, actually, I found it because I. So when I started using Libre all those years ago, after maybe about eight months, I started having this. Reactions to the adhesive, and I started looking online for this because at the time, I was probably one of the first people in the diabetes center where I go to, that got it because I was also kind of an early user, so they didn't have experience with this. I also, when I had the first reaction, like, I had no idea what that was. And so I started looking online, and I found an article in your blog about, I think, a child that had kind of severe reaction. You found that post competitive? Yes, I found that post, and I think that is where I found your podcast, because it was, you know, the blog page, and you were already doing the podcast. And then I started listening, and I've kept listening kind of on and off, sometimes more frequently or less frequently, but since then, yeah, it's one of the like. For me, it's the main diabetes resource that I use to, you know, not just to learn about management, but also to learn the stories that people share, like that kind of community. It is, for me, it was your. Your podcast and the book Sugar Surfing that I also found more or less at the same time I found your podcast.
- [50:54]
A
Yeah.
- [50:54]
B
Yeah. So I'm. I'm a big fan of the podcast, Rita.
- [50:57]
A
Thank you. I should have Dr. Ponder back on, shouldn't I? I should reach out to him, see if he wants to do it again. I think he did it in the first season. This is like 10 years ago.
- [51:05]
B
Yeah, I remember. I heard that episode. That was a long time ago. Indeed.
- [51:10]
A
It certainly was. First of all, that's really. That's wonderful. That you found it. But how long ago did you find it? How many years into diabetes?
- [51:19]
B
So maybe. So I've been using a pump for eight years, so maybe it was two years before that.
- [51:24]
A
So maybe about six years ago you found this.
- [51:27]
B
No, no longer than that. Maybe nine years, something like that. So maybe nine.
- [51:33]
A
Almost from the beginning.
- [51:34]
B
Yeah. But I have the feeling that when I started listening to it, you were already at it for a while, so. But it could be that you were already doing it for a year or more.
- [51:44]
A
I think that adhesive episode was like in the first or second season, so.
- [51:49]
B
I don't think I've heard that episode. Actually, I read the blog post. I wasn't aware that there was an episode on that episode.
- [51:54]
A
Yeah, I think. Hold on. Severe adhesive, I think is how I remember the title being. Talking severe adhesive allergies with Henry's mom. Episode 14. It was in May of 2015. And then I made. Yeah, I made a blog post about it too. So the little boy and his face is all red and he's got the horrible, like, almost like chemical burns around him and stuff like that. Right. And she figured out how to like block the adhesive allergies.
- [52:23]
B
Yeah, exactly.
- [52:24]
A
Yeah.
- [52:24]
B
And you listed the products there in the article and explained how they did.
- [52:28]
A
It, and that helped you.
- [52:29]
B
So for delivery, at some point I stopped using it because. And then I knew I was going on a pump a few months after. And for some reason I thought if I kept reacting to it, maybe I would react to the pump adhesive and then to the pump adhesive. Actually, I had a reaction, but much milder. And that was, let's say, easier to solve and with. So I've had problems with reactions to the sensor, even Dexcom, the G6, but. But I've. In the meantime, I found ways to. To address those. Also there are like some Facebook groups that, you know, on. On the rashes and the reactions, so. And there are many suggestions there. And eventually I found something that works, let's say, most of the time for me. So I can use a pump and a sensor relatively okay without any. Any further issues. But that was hard. So that when I reacted to the Libre adhesive and at some point I decided to stop using just, you know, too much. That. That was hard. That was hard because at the time there was no alternative for sensors. So I went back to pricking my finger many times a day for some months, maybe half a year or something. And then I. I started with the Dexcom.
- [53:48]
A
It is really sad that this, you Know, immune issue that people, so many people have, you know, some of it, you know, sometimes it causes you not to be able to make insulin and then you're suddenly have to use an adhesive and then you find out that your immune system doesn't like the adhesive and like it'. But I'll tell you, it is some days you just feel like, my gosh, this won't stop. You know, whenever somebody's talking about something that, you know, got down inflammation or you know, turned off an immune response for something like I get excited about. Hopefully that's a way things, you know, can go in the future. So you find the podcast before your pregnancy?
- [54:24]
B
Yes, way before, yes.
- [54:26]
A
What was your A1C before? This will sound self serving, I don't mean for it to be, but like what was your A1C your outcomes like before the podcast and after it?
- [54:34]
B
So I was, well, almost always in relative good control. So I was in the sixes for many years. The highest I've been, I think was 7.7 once and maybe for a year or something I was in the low sevens. But I don't remember like before and after the podcast. So what I liked about the podcast is that and also the book Sugar Surfing it was that some things that I was doing by trial and error that, you know, that you were also doing with your daughter and others were doing it and well, in the end we were not crazy about doing those things. Contrary to what, you know, sometimes doctors tell you like to do things. So. So in a sense it was kind of validating for me to see, oh, you know, I'm doing this and other people are also doing kind of similar things and it works. So therefore we're not craz. You know, sometimes it's your doctor says oh, you know, do it this way or that way and. And then it doesn't work. And sometimes it's hard to understand why it doesn't work. And then you go and trial and error until you find something that works for you and you get to the office, you say, oh, I did this and say, oh, okay, interesting. If this works for you, okay. But like no one else is doing this. Yeah, so. So it was kind of validating in that sense.
- [55:58]
A
You're not the first person I've heard say that recently. Somebody said it to me recently too and it was impactful for just the knowledge that like, hey, other people are doing this and I'm not crazy. I'm the thing I think I'm seeing. I'm seeing is really helpful. Yeah, yeah, it's awesome.
- [56:15]
B
So before I went on a pump, even with pencil, I think what really did change it for me was the cgm, because you could see things and you could way easily address them, or at least easier than before. So before I went on a pump, so those maybe last couple of years with pens, I was in the five, so mid to high fives, and I'm still in that range with the pump. So when I switched to the pump, I basically kept more or less the same A1Cs.
- [56:49]
A
Awesome.
- [56:50]
B
So from, I don't know, 5, 5 to 5, 9 or 6.
- [56:53]
A
Oh, that's really lovely.
- [56:55]
B
Yeah. So it's been like that.
- [56:57]
A
So you have your baby and, you know, how old is she when she's diagnosed?
- [57:01]
B
Then she. So I took. So she was. Well, I guess diagnosis in the sense that we know she's type one or she'll need insulin eventually. She was four. Yeah. So I. We screened her because I. So I think I had learned, actually about screening tests probably from your podcast at the time. So when she was born, there were no screening programs here, at least none that I knew of. But then when she was 4, in the diabetes center I go to, they started like a screening for kids, initially for children of people with type one or for siblings of type ones, and then they extended it to the general population. And so when I saw that, I thought, okay. Like, I. I always thought, well, if I have a kid, I will take her to screening. But of course, I thought she would test negative, and she did not. So she. She was four and a few months at the time, she tested positive for two antibodies. And then they ran glucose tolerance test, which she passed, but they also tested her A1C and she was at 5.8. And so because she was, you know, already kind of outside the norm, I spoke to the doctor, and we agreed to put a sensor on her. And then, you know, a few hours I saw that things were not. Well, a few hours she put the sensor. So she was four, but. But she only started on insulin when she was almost five and a half. So that was more or less a year since we found out that she was in phase two already and before she started on insulin.
- [58:51]
A
I see. Was it shocking to you, hard for you to adjust to the idea? Or did you. I mean, how did it hit you?
- [58:59]
B
It was hard. Yeah. It was hard to hear that she had tested positive. So at the time, of course, I did not know she was in phase two already. So when they told me she had tested positive for those two antibodies, but I knew she would get it right because. Well, at least most likely she would get it throughout her life. And then, you know, I guess during that year. So she. She always. Then she started using a sensor. And she used a sensor, I guess, because I wanted to for that whole year, because I thought that when she started, I thought it would be quick, you know, for her to start on insulin.
- [59:38]
A
Yeah.
- [59:39]
B
But it was not as quick as I expected.
- [59:42]
A
That's good. By the way. The longer she. The longer she has beta cell function, maybe the more, you know, she can kind of maintain. It was put to me recently that, you know, Arden was diagnosed so young, I didn't realize that, like, beta cells are still kind of multiplying as you're growing, which makes sense, right? It would have been nice if Arden could have made some a little longer, I guess. And. And so I'm, you know, I'm glad for her that it took as long as it did. How is she? I mean, that's pretty young, right? Like, so. But how is she now? Like, with having diabetes? Is it, like a connection for the two of you?
- [60:19]
B
Yeah, I think it's. Yeah, I think it is, because. So on the one hand, she's. She. She. She would see me doing things when I knew she would, you know, eventually start on insulin. I was also more kind of vocal and showing her, oh, let me see, I'm changing my pump site, taking a shot, or I'm pricking my finger. So that kind of awareness, even before she knew that she would, you know, one day have to. To take insulin. But it. Yeah, it is. It is a connection and something that we can connect over.
- [60:54]
A
Is it easier to take care of yourself or of her for outcomes that you're looking for?
- [60:58]
B
So I would say that. So she started on a pump, actually, in September, and I would say that, okay, since she's starting on insulin, I've been more focused on her care, but. And myself on autopilot. But even with myself on autopilot, things are going well for me. So it didn't change, you know, my management substantially because I guess on the one hand, I kind of know what I'm doing does not mean that I don't, you know, mess up sometimes with me or with her. But I'm. I'm more kind of on autopilot. Maybe I could. I would be a little bit more on top of things if she was on type one, and I didn't have to pay attention to that, but I don't think things would be dramatically different.
- [61:47]
A
But her having diabetes has used up a little bit of your compute cycles and you can't give as much to yourself as you had in the past. Sure, yeah, yeah, yeah.
- [61:56]
B
But I don't think, overall, to the detriment of my quality of care, like a little bit, but not substantially. So that's what I.
- [62:04]
A
Because you were already there, too. You knew how to. Yeah, yeah. If this would have been at a time when you were struggling still, then it could have been a different thing for you.
- [62:14]
B
Absolutely. Yeah, absolutely.
- [62:15]
A
Wow. How involved is your husband with the diabetes? Is it one of those things where it's like, oh, you know how to do it, it's yours, but. Or is he. Is he helpful?
- [62:26]
B
No, I think he relies maybe more on me because of my experience, but he's able to do it, like, more or less independently. Maybe not the way I would do it, but he will get there, I guess. Yeah, but. But he relies more on me, of course, because of the experience I have.
- [62:47]
A
Do you think your daughter's diagnosis made him see you differently?
- [62:52]
B
Myself. No, I don't think so.
- [62:54]
A
Did he have a very deep understanding of your diabetes already, or did her being diagnosed and him seeing it and having to think about it for her, do you think it. Do you think it made him look and go, oh, I didn't realize that Rita was going through some of this.
- [63:07]
B
No, I think had a relatively good idea. Yeah. So maybe not the intricacies of management, but, like, the big general ideas. I think he. He was aware of it.
- [63:18]
A
Okay.
- [63:19]
B
So I. I don't think there was, like, a big change on that, but of course, it's very different to know something and then to have to manage it on your own. Right. Or. Or manage it for someone else.
- [63:33]
A
No kidding. Right. Knock you over some days. It's interesting, you. You have a note here that says the importance of healthcare professionals at diagnosis and letting go of the supposed official rules of management. What was your experience with getting rules and. And having to get rid of them?
- [63:52]
B
Yeah, I think what I meant by that is that, you know, you were told all of these different things at diagnosis, which apparently are very similar to people, you know, across the world or in many countries. That's what I hear from, you know, all your guests. But then, as you well know, that's kind of the crash course. Right. And that's not maybe the best way how to manage things than in practice. Right. And I. I think letting go in the sense of, okay, what these people are telling me, they. They mean well, but they don't really know what they're saying sometimes, you know, they're not probably providing the best advice because they are advising on management, but they're not managing it themselves. And sometimes things are very different. And I think letting go in the sense of I can, like, learn by myself, I can do things by trial and error and learn from that and learn what it. How it works for me and how. And that is important in the sense of not just, you know, following your doctor's orders, because maybe that will get you to a point, but not to the best point where you can be. And I've been lucky with, in general, with the endos I've had, but most of what I know, like, most of the valuable things I know how to do, I didn't learn it with them. I learned them by trial and error. I learned them through your podcast. I learned them through, I don't know, sugar surfing or other resources out there. Not through, you know, the doctor's advice necessarily. Yeah, they have their role and it is important. But it is important that people, in my view, take ownership right. Of their own care if they are, if they are at that point, let's say, in their lives. Because there are many things that can make this farther. But I could give you an example, like the rule of 15. Well, as many people have found out that that doesn't work as it should be as it should many times. Right. So that ability to change gears and to see, okay, this doesn't work for me, so let's try something else. And what I hear sometimes in my endo appointments is that they will tell me, yeah, you know, but you, you change your settings in your pump, you do this, you do that. But most people we have here, they don't do that. And that's something I cannot wrap my head around. How can I not do that?
- [66:21]
A
You see, maybe the most important thing that you can do as a person living with diabetes is understand how insulin works and feel the autonomy necessary to change your settings.
- [66:31]
B
Yeah, exactly.
- [66:32]
A
That's really going to help you live easier, better, longer, healthier. It's a hallmark of people who have success.
- [66:42]
B
Yeah, totally agree. But it seems that at least for some people, it's very, very hard to do that because the doctor, or maybe they think the doctor knows best because there's a doctor. Right, but. And sometimes even people that have been with type one for a long time. So that's always a bit confusing to me.
- [67:01]
A
I've done my best to interview people so that you all can hear the different personalities that intersect with diabetes and all the different reasons why people might, you know, not take as much, I don't know, control or, you know, be as involved or whatever. Some people like, like, some people lay back. Some people think the doctor knows better than me. Some people are people pleasers. You know, some people are like me, and they're like, I don't. That doesn't make sense to me. I'm not doing that. You know, like, there's so many different, so many different ways that people think. I just hope that I've done a good job of, you know, shining a light on all of them or as many of them as possible. So maybe you can hear yourself and those other people and then say, like, oh, I could see where that would be valuable for me to, you know, X, Y, Z, do something or do something differently or whatever. Rita, I have to ask you. Portugal, how's the weather? Do I want to move there? I'm looking for a place to go when I retire. Is this the place?
- [67:57]
B
Well, apparently a lot of people move here after they. Yeah. And I think there's a big American community now in Lisbon with digital nomads and etc. So not just people that retire and come here, but, yeah, the weather is, Weather is nice. We are not, I would say, as a Mediterranean country, as some other neighboring countries, because we're on the Atlantic, but, But the weather in general, it's, it is nice. Yes.
- [68:25]
A
Yeah. I mean, these, every time you see a picture of there, it's just colorful houses and the ocean and.
- [68:31]
B
Yeah, but, you know, those are, like the marketing.
- [68:34]
A
Those are the marketing pictures, right? Like, yeah, exactly. Where am I gonna end up living? I'm not gonna live in one of those giant houses by the, you know, I mean, there's like, a castle on the ocean here. What am I looking at? I, I, I'm not gonna be able to rent a house in there.
- [68:45]
B
Yeah, yeah, yeah. Most places here are not castles on the ocean and. Yeah, but it's nice to visit. I mean, you can always come and visit, maybe do a juice box podcast or juice box event here. I think, yeah, that people would appreciate that. And then you can decide if you want to stay.
- [69:02]
A
Are there, Are there a lot of type ones there? Do you have, like, friends in real life that have type one?
- [69:07]
B
So from my diagnosis onwards, I didn't from. For the longest time, I didn't know any other type ones because I was not diagnosed as kid. So for kids, you know, you have, like, the summer camps or type 1 kids, etc. So I was diagnosed as an adult and so I didn't. Let's say I did not have access to that. And for the longest time, I didn't know anyone else. Yeah, I know a few people that are type ones themselves, but I'm not in close contact with them. The people that I'm closer to now are a couple of other parents of type one kids, which they don't. They themselves are not type one, but their kids are.
- [69:48]
A
Okay. Is that tough, or do you just. You use the online community for that part?
- [69:53]
B
Yeah, I think the online community, and I think it was tough in the first years from my diagnosis that I didn't know anyone else and I was kind of doing it, you know, alone. But at some point then it stopped. Stop being important. I would say I would just, you know, it just became part of my life and it didn't have that prominent, you know, role or prominent place in my day to day life.
- [70:23]
A
Yeah.
- [70:25]
B
But it is good to have, I would say now, a community, online community that you can turn to if you need, but also people in real life, in this case, the parents of other type ones, because they understand things in a way that others can't. Right.
- [70:45]
A
All right, well, I'm going to keep looking at Libsyn. So also, do you know you live in Lisbon? The company that I use to get my podcast to you is called Libsyn.
- [71:02]
B
Oh, okay. I did not.
- [71:04]
A
You would have no way of knowing that. I just realized, like, I. I'm running a very real risk of mispronouncing Lisbon while I'm talking because of that. But if it does look like a nice vacation spot, though, check it out.
- [71:16]
B
It is. Yes. And not just the capital, but the rest of the country is nice too, so. Yeah.
- [71:22]
A
People have cars. Is it a car place or is.
- [71:24]
B
It a. Lisbon is a car place.
- [71:27]
A
Yes. Yes. I don't want to get rid of my. I like having a car. I would have trouble.
- [71:31]
B
We are definitely a car country and a car city. Yes.
- [71:35]
A
Okay. All right, I can do it then. I mean, it's going to be warm, right?
- [71:40]
B
If you come in summer. Yes. Spring, autumn, better. And winters are not so cold. So maybe, I don't know. Well, again, Celsius. So not in Fahrenheit. Let me check. Maybe, I would say, I don't know, lowest in Lisbon, at least where the weather is milder. Like 10 degrees would be the coldest. So that's 50 Fahrenheit.
- [72:01]
A
I can do that. Okay.
- [72:03]
B
In the. In the capital.
- [72:04]
A
Yeah.
- [72:04]
B
Other places it gets colder. Yeah.
- [72:06]
A
I'll put it on the list. I'll never leave here. I'll just, I'll just, I'll talk and talk and talk about leaving and just die in this house.
- [72:12]
B
Probably just come to visit. That would be nice.
- [72:15]
A
I would like to see the place. That is just lovely. I can't thank you enough for doing this, Rita. I want to make sure that. Have we talked about everything that you wanted to get. Get to?
- [72:23]
B
Yeah. I'm just happy to, you know, contribute somehow to, to your podcast. I'm a fan, so it's, it was a great pleasure to talk to you.
- [72:32]
A
It was lovely to speak with you as well. I can't thank you enough for your time. It means the world to me that you are. I mean, anybody comes on here and shares their story like this. So thank you so much. I really do appreciate this. Can you hold on one second for me?
- [72:45]
B
Sure. Thanks, Scott.
- [72:46]
A
Yes, thank you. A huge thanks to my longest sponsor, Omnipod. Check out the Omnipod 5 now with my link omnipod.com juicebox you may be eligible for a free starter kit, a free Omnipod 5 starter kit at my link. Go check it out. Omnipod.com Juicebox terms and conditions apply. Full terms and conditions can be found@ omnipod.com Juicebox US Med sponsored this episode of the Juice Box podcast. Check them out@usmed.com juicebox or by calling 888-721-1514, get your free benefits check and get started today with us Med. Thank you so much for listening. I'll be back very soon with another episode of the Juice Box Podcast. Podcast. If you're not already subscribed or following the podcast in your favorite audio app like Spotify or Apple Podcasts, please do that now. Seriously, just to hit, follow or subscribe will really help the show. If you go a little further in Apple Podcasts and set it up so that it downloads all new episodes, I'll be your best friend. And if you leave a five star review, oh, I'll probably send you a Christmas card. Would you like a Christmas card? My Grand Rounds series was designed by listeners to tell doctors what they need. And it also helps you to understand what to ask for. There's a mental wellness series that addresses the emotional side of diabetes and practical ways to stay balanced. And when we talk about GLP medications, well, we'll break down what they are, how they may help you, and if they fit into your diabetes management plan. What do these three things have in common? They're all available at juiceboxpodcast com up in the menu. I know it can be hard to find these things in a podcast app, so we've collected them all for you at juiceboxpodcast. Com. Have a podcast? Want it to sound fantastic? Wrongwayrecording. Com.