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Scott Benner 0:00
Hello friends, and welcome to episode 1043 of the Juicebox Podcast.

Rhema is the mother of a child with type one diabetes and the mother have another child who has been called stage one type one by TrialNet. And on top of that Raima was misdiagnosed with fibromyalgia for 12 years when what she really had was something completely different. While you're listening today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. We're becoming bold with insulin. When you support the Juicebox Podcast by clicking on the advertisers links, you are helping to keep the show free and plentiful. I am certainly not asking you to buy something that you don't want. But if you're going to buy something, or use the device from one of the advertisers, getting your purchases set up through my links is incredibly helpful. So if you have the desire or the need, please consider using Juicebox Podcast links to make your purchases. When you use the offer code juicebox. At checkout, you will save 40% off of your entire order at cosy earth.com Get your clothing your towels and your sheets from cozy Earth and save 40% with the offer code juicebox. This episode of The Juicebox Podcast is sponsored by touched by type one, and their dancing for diabetes event is on sale right now touched by type one.org. Do you love dancing, the love helping people with type one diabetes, you're gonna love this touched by type one.org. Click on the Events tab, get your tickets, they will go quickly touched by type one.org. The podcast is also sponsored today, by the contour next gen blood glucose meter contour next.com forward slash juicebox. Get the meter that my daughter uses the one that has Second Chance test strips, the one that's incredibly accurate. Get the contour meter contour next.com forward slash juicebox.

Rayma 2:18
My name is Rima. I have a daughter who was 10 years old who has type one, she was diagnosed when she was four, I have a seven year old that TrialNet calls stage one type one. And he was 18 months old. They told us he you know would he had the highest likelihood of also getting type one and he's seven now and still has regular blood sugar. So we're talking to the endocrinologist about is it to live to live mass

Scott Benner 2:50
plasma, which I think is now 10 plays a map, which is called tz old now.

Rayma 2:55
T zeal that's a lot easier, actually. And so you're just about talking about that.

Scott Benner 3:01
You and I are talking on the same day, I put up an episode with a mom whose child was went through the whole Teasle clinical trial. I have to listen to that. Yeah. And back when they didn't, I believe it was double blind. So she didn't know if they were really getting the medication or if they were getting a placebo. You know, the kid had like some pretty amazing results. So she's pretty sure he was on the medication. It's interesting.

Rayma 3:26
We're really interested because he has normal blood sugars right now. But he has all the antibodies. And so technically, from what we've been told, when he turns eight, he'll be eligible. So it'd be like a real true prevention type of a situation versus early intervention.

Scott Benner 3:44
Yeah, they were just on I wouldn't usually do this. But last week, I have to find it for you. Episode 842 842.

Rayma 3:52
Okay, let me definitely listen to Lenny Ramos

Scott Benner 3:56
came on she's the CMO of prevention bio, they brought the drug to market and she talked all about it. They're doing talks about how they're going to use it or how they want to use it. Other studies they're trying to do like all this stuff, so might be interesting to

Rayma 4:12
Yeah, that'd be great. We're kind of like, we go back and forth. Because you know, you don't want to he still has normal blood sugar. So you just don't, you know, ya know, but everybody tells us it's just inevitable, it will happen, you know, sometime. And then to make things worse, we just all we avoided COVID This whole time until right before Christmas, and so he just had COVID as well. So I know that can be a trigger. So we're just trying to do all we can my daughter's diagnosis was a real blessing for him. And so many ways of him being able to know what his risks are and and since he's been three years old, I've been I've had him on Hydros, vitamin D and Dr. Sears omega threes that they use out of the study in Miami, and nobody else can come up with why he would have been able to lasts this long without

Scott Benner 5:01
getting it? How many of the antibodies does he have? He has all

Rayma 5:05
five right now, wow, at at 18 months old, he had three of the five, in the first one, he had two of the five, then he had three of the five and four of the five. And then through COVID, we stopped doing trial net, plus they got a little, it got a little hard for him once he was old enough to be aware that we were going in for the IV and all of that and just kind of the balance of being traumatizing for him plus the risk of getting COVID Going into the, you know, into the Children's Hospital. We just stopped and then because there's something to do now, what's the easy word for it t, tz yield, a tz yield. The my theme endocrinologist that's his daughter has started to see him. And so she's running the antibodies and everything. There, she just prescribed us a Dexcom for him. So we could see exactly what was going on. But I tested him, you know, periodically. And so far his blood sugar's have all been normal.

Scott Benner 6:03
Yeah. What is, I guess in your head? And you're married? Right? So, you know, the, the two of you when you're laying in bed at night, and the lights are off? Like, what's it like? Like, knowing like that, I mean, with pretty, pretty reasonable certainty, right? Your son's gonna get diabetes. So like, do you talk about that?

Rayma 6:25
Okay, so what's it like lying in bed? For for the two of us, Jason is, that's what he is asking. I worry, for sure. And I think about it, and I read a ton of what to do. And I think that's where I landed with the vitamin D and the Omega threes, it's the only thing I really looking at the studies have felt comfortable with, especially because he was so little, you know, I would go into the pediatrician. And they would ask me, you know, I tell him about him. And they would all look at me like I was crazy. And I even had to at one point had the trial net doctor called the pediatrician, because they were telling me like, I was giving him toxic doses of vitamin D omega three, they just thought I was nuts to be able to predict the fact that he would get it. Oh, I think they thought like, I was just projecting or something. But that's interesting.

Scott Benner 7:17
So your your pediatrician thought, like, there's a, there's a mom that comes in here. And she's, like, freaking out that a kid's gonna get diabetes, but how would she know that?

Rayma 7:28
Yeah, kind of they're like, Well, no, you can't predict that it's not genetic, you know, they weren't very knowledgeable, give it I do love the pediatrician and the office. But when I brought my daughter in, I had had her in multiple times over probably like the seven to eight months prior to her diagnosis for UTIs. And stuff like that. I mean, she was, you know, three and a half. So it was hard to, you know, at that point, it was hard to, you know, they would say, Oh, you have a new baby at home, and she's just wetting the bed because of you know, motional stuff or and I was traveling a lot for work then. So I sold pharmaceuticals and at some point genetic testing, and so I was gone a lot. And so people would say, Oh, the you know, she just hard because mom's gone a lot, you know, all the mom guilt. And then, right when we had, they're only two weeks apart, three years, but the two weeks apart. So we had a birthday party for both of them. She threw up that night, and it was like, three o'clock in the morning. And it was actual cake still. And I knew like I knew enough about medicine. I'm not a medical person, but I knew enough from always been in the medical field, selling things, you know, for almost 20 years. At that point, I knew enough to know like, you should digest your cake, you know, by then. And I just googled and googled and Googled, and the only thing that came up was Taiwan. So when I took her in for her four year checkup, I just was like, Please test let's just, you know, and I didn't realize at that point, it was just as easy as like me buying a glucometer and testing for blood sugar. You know what I mean? Because I was, wasn't as knowledgeable and, and they really pushed back and said, No, she's too young. We don't have anybody to sage in the practice that's diagnosed, and I just kind of said, Look, you're gonna put me out of my misery. Like, either you're going to test her here today, or you're going to tell me where to take her because I gotta go back to work tomorrow. And I can't keep thinking, right, you know, like, put the crazy mom at her ministry. About a half they left us in the room for about a half power. I was there with both kids by myself. And then they came in and she was like, Oh my gosh, you were right. And it still took me two or three minutes to understand. And I remember asking her, wait, are you telling me she has diabetes? Like they're Yeah, you know, you got to go home pack a bag and go to Chela.

Scott Benner 9:51
There's a an entire conversation to be had around the idea that someone at some point said your three year olds pee in the bed because you had have a job. And that's emotionally difficult for her. I'm like, That was fascinating.

Rayma 10:06
It was really, there was a lot of mom guilt in there. Yeah, a lot of people had a lot of opinions about that. But

Scott Benner 10:16
wouldn't it be nice diabetes? Yeah. Wouldn't it be nice if people's opinions were based on something other than the little thoughts in their head?

Rayma 10:23
Yeah, yeah. My mom and my mom and mother in law both had opinions that were sad. And you know, just a lot of friends said, people can do that, or and you go, and you take your kid to the doctor. And they say, well, sometimes their bladders just aren't that big. And I was like, but she was potty trained before. Yeah. And she was, she's very articulate extremely smart. So she always had been a good communicator. And sometimes she would tell me, like, I still wanted to stop playing, you know, and, and I had an accident, but then sometimes you could tell it, she just couldn't help it. And that's when I would take her and I was like, well, maybe she has a UTI. You know?

Scott Benner 11:01
I mean, in your story, the one assumption I kind of understand is, hey, listen, this lady's while their kid has diabetes. Now, she's freaking out that the boy has it. But But I don't Yeah, I don't know how the next thought isn't. But you know, she was right about the kid and the kid, then the daughter does have it. And it is a, you know, a thing that runs in family lines. So why don't we, it just everyone wants the same. Everybody thinks they know something. And they always want to say no and be right. It's not in

Rayma 11:31
this isn't a giant pediatric office. That's a really good very recommend. I really like my pediatrician there. And now they test every well check. All the way down. I think, too, because I was like you're doing cholesterol on these kids like the dragon testing for Taiwan. And I really pushed back like, come on, you're already pricking their finger.

Scott Benner 11:54
The cholesterol test on a little? Yeah, I'm

Rayma 11:57
like, This doesn't make any sense, you know, instead, but I did have to have the trial that Dr. Cole and I did have to bring studies in. And then they wanted, of course, to test him for levels. But I was already testing in various levels to that grassroots. Yeah. And so I knew like, that's how I figured out how much because I wasn't given a man, I still am given him a lot of omega threes and vitamin D, but his levels are in the high end of the range, not above the end. And you know, so far, I see only thing I can attribute because we've not done a carb low carb diet we've not.

Scott Benner 12:30
Well, you know, what's interesting, too, is when he gets COVID, I have to assume that you guys just go into a corner and go okay, well, this is it. Like,

Rayma 12:40
immediately. Yeah. And I've got my husband's more level headed and more calm. So he, he was like, it'll be it'll be fine. And hand foot and mouth was Hannah's trigger. My daughter. Oh, that's what my daughter had. Yeah, so that. That's stupid coxsackievirus. But they trialed it did call us. I think it was like March 3 of 2020. And said, essentially said hi to him. You know, he's little, and you don't have to have him in preschool, pull him out. And keep them at home. Because this has a high likelihood of triggering. So I do have to say that trauma out of Atlanta, and they were very doctrinaire, there was very thorough and called us from his cell phone on a Sunday.

Scott Benner 13:22
Oh, and was just like, hey, roll that kid up in a blanket, put him in the closet, because

Rayma 13:26
pretty much and then we just hid. And I, I had already been homeschooling my daughter. And so we just homeschooled and hid. And luckily, we had a great environment to do that. And then they got vaccinated. And we did that. And then we got that we, we thought, I thought we were good. I have autoimmune disease that we know now to which was fiber called fibromyalgia, by the doctors for 12 years until I had a first degree relative with an autoimmune disease, my daughter, and then all of a sudden they ran the right testing. And sure enough, it's autoimmune. And so, you know, her diagnosis is devastating, so many ways, but really has helped and been a blessing

Scott Benner 14:07
shined a light on it for a number of other people, right? It gets everybody thinking in the right direction.

Rayma 14:13
Well, and then all of a sudden, you're like, Okay, autoimmune disease. All right. Yeah. Well, my husband and I both have autoimmune disease on our sites and family. They're just not type one.

Scott Benner 14:22
Right? Right. Right, you know, then it all starts to make sense that you you have the fibromyalgia diagnosis for 12 years and what was really wrong,

Rayma 14:32
psoriatic arthritis and something called pots pots for that postural orthostatic tachycardia. Yeah. And I didn't know what was wrong. It took a number of doctors and a lot of time and effort and I don't work anymore because of that. But even when I was having a hard time staying with work, I didn't know how to articulate what was wrong because I had been misdiagnosed so many times and it wasn't to like really got it with the right doctors, but Yeah, her diagnosis really led to a lot of knowledge for myself for my son.

Scott Benner 15:05
We figured out my wife had hypothyroidism because Arden had diabetes. Yeah, she has a thyroid issue too. Right? rd. Arden does too. Yeah, yeah, actually, my family does but me my son has Hashimotos and Arden and Kelly that everyone takes a thyroid medication. As you heard earlier, this episode of the podcast is sponsored by the contour next gen blood glucose meter. But when you get a contour meter, what you're really getting is their test strips. Contour next test strips feature remarkable accuracy as part of the contour next blood glucose monitoring system. They're the number one branded over the counter test strips. And they of course have Second Chance sampling. Second Chance sampling can help you to avoid wasted strips, contour next.com forward slash juice box. Near the top of the page you'll see a Buy Now button it's bright yellow. When you click on that, you'll get eight options of places online to buy contour meters and test strips walmart.com Amazon Walgreens CVS pharmacy, Meijer, Kroger target Rite Aid, these are all links you'll find my link linking the link links below blink blink, blink blink. I'm just getting head over there. Now, won't you please listen, the contour meters are incredibly accurate. They are simple to use. They're easy to hold, easy to read, and they have a bright light for nighttime testing. Part of me wants to say that the second chance sampling is the biggest deal. But honestly, it's the accuracy. These meters are accurate. And I know a lot of people like to think well, I have a CGM. I don't need a meter. You do. You need a meter. You need to be accurate. You deserve it to be accurate contour next.com forward slash juicebox. Take a look at the contour next gen and the other meters available from contour. We use my links you're supporting the production of the show and helping to keep it free and plentiful.

Rayma 16:59
Oh, wow. Yeah. It's amazing how all of a sudden, it's like a light shines on it. And you go to the right doctor, and they're like, oh,

Scott Benner 17:06
yeah, when they start telling you like, exercise more eat right, do this. And you're like, I don't think that's the problem. Like, I'm just like, I'll tell you. I mentioned this to somebody the other day and I don't know if I talk about it enough but ardent takes T four and T three. Yeah, that you're brilliant to figure that out. Because Oh my god. We had to figure something out. She she couldn't stay awake. Like no kidding. In her in her year, her her high school yearbook we, you know, you buy a page to like, say congratulations to your kid, or maybe your kids are too young. But one day that school is going to hit you up for 100 bucks to put a picture of your kid in the yearbook when they're senior. And there's a really beautiful picture of her in the center of the page. And then all around her like nine different images are just cell phone pictures of her passed out on different odd surfaces. Like, like, face down on us, like on a stone countertop dead asleep. Or in the fetal position.

Rayma 18:05
That's real fatigue, like, yeah, people who have not experienced that don't understand that that's a level of fatigue, that's totally different.

Scott Benner 18:13
Art is not a like for anybody wanting to think that like art is not a lightweight. Like she's she's, uh, she battles. And so she'd make it all day through school, and then come home and sit down and just pass out, like for hours at a time. And you know, she would sleep all day and she couldn't get up early in the morning, all this stuff would happen and, and we figured it out once. And then she had a side effect from something else. And we attributed it as my fault. I attributed it to the T three by mistake. And so she stopped the T three for a while until we figured it out again and put her back on it but I'm going to tell you right now like she shuts off like a wound downclock without Saito mill. It literally is the only reason why she can she can do anything. So

Rayma 19:03
that's why it's so good that she's able to live a full life

Scott Benner 19:06
now. College she's going crazy. Yeah,

Rayma 19:10
I wish there was a like an actual auto immune doctor, you know, that is that would be more comprehensive because I think it's really frustrating to have to go to multiple different doctors, and then try to put the pieces of the puzzle together yourself. Yeah. And that is the parent. Well, that's

Scott Benner 19:26
definitely the game. The game is definitely you have to figure it out for yourself.

Rayma 19:31
People don't understand that. Like I'll talk to people that don't have autoimmune in their family or that have a simple auto immune Marcin bought immune and they just they think I'm not so I just don't talk about it a lot. Yeah. Well, here's because and then having multiple autoimmune diseases like how could you have all these and I'm like, wow, yeah, sucks. But it is what it is. You know, it's true.

Scott Benner 19:54
Yeah. And by the way, most of them have overlapping symptoms. So Yeah, fatigue is a huge one, you can look at the symptoms and be like, This could be any number of a half a dozen things. You know,

Rayma 20:07
I don't know how many times I was tested for thyroid, that was the only thing that they really looked at. But I was active. I was working, I was traveling, I had a successful career, you know, all of that and had autoimmune disease. But I would crash I would go Go, go, go go. And then I would completely crash.

Scott Benner 20:24
Yeah. Sometimes you will yourself a little bit. But it's even when you're doing it. You're exhausted. And exhausted. Yeah. And exhausted in a way that I don't think people understand. It's not like you worked all day and you're tired. Like it's a different. It's a different thing.

Rayma 20:39
I call it it's the all just take a little tiny nap while we're stuck in traffic right here. You know, like the irrational thinking you're on the freeway. stop and go traffic. You're like, I could just sleep for just like, you know,

Scott Benner 20:51
yeah, I'll shut my eyes while I'm driving. I'll be okay. Yeah,

Rayma 20:54
it'll be fine. It's like all this irrational, because you're like, well, well, well, well, yeah, that's probably not gonna be alright. If people have been fatigued when they're pregnant. It's like, just a ton of people. It's pregnancy tired. Like, it's really tired? Like, you can't? Well, are you willing to sleep anywhere?

Scott Benner 21:09
Very recently, I compiled a list of autoimmune issues from listeners, which is extensive, and you'd be like, shocked at some of the things that people are like, Oh, I have this and you think like, I've never heard of that before. And, you know,

Rayma 21:26
there's like 100, and something different autoimmune disease, right? There's so many, and they can be as you know, as some things that are fairly benign, and some things that are life threatening. It's really a scary

Scott Benner 21:36
Yeah, Jenny and I are gonna do like a defining series about them. So that, you know, if they feel like, Oh, I'm having these symptoms, they can move to that episode to try to like figure it out. Because I don't know another way you're supposed to figure it out. I spent so many years and so much time, like sitting in this chair, staring at this wall thinking like, Okay, what's happening? This is what's happening to her and Googling and reading and looking at symptoms again, and asking her frequent questions and just, you know, it's a it's not a great way to have to live. So,

Rayma 22:08
no, it's a little obsessive. I totally hear that. And I still do I read everything about prevention. I read everything about causation. I read everything about strong management, and we do a lot with management. Having good numbers.

Scott Benner 22:23
Hey, for fun, I'm

Rayma 22:24
pretty obsessive about

Scott Benner 22:25
that. Tell everybody what the noises are back home where you are.

Rayma 22:29
I'm on a cruise. And I'm sorry about the noise. They're filling the bar. I found a quiet spot to sit but they're getting ready. It looks like to open the bar at noon here. So

Scott Benner 22:39
no, that's okay. I don't I wanted to I wanted people to understand what like what you went through to be on the podcast. So thank you.

Rayma 22:46
Yeah, we're in. We're in Jamaica right now at Port.

Scott Benner 22:50
Oh, nice. That sounds lovely. Is it?

Rayma 22:53
Well, we're not gonna get off the boat. But it looks lovely. And it's nice and sunny and warm. So I use your whole family on the cruise. It's just you and your husband? Oh, no, that would be so great. No, it's all of us.

Scott Benner 23:04
No kidding. So yeah. So you did not end up like, keeping your son in the closet. He's He's allowed out now.

Rayma 23:12
He's in the kids club. Yeah. Well, he had COVID. Yeah, we take care of it at that point. We've just had it. You know, within the last really what happened was we planned this for Christmas for the kids. Because we got no, we ended up getting COVID right before Christmas. So it made sense to, to go out and venture figuring we've all been fully vaccinated. And we've had it so we probably have a few months at least. You didn't get it again.

Scott Benner 23:40
Oh, I don't know if that's how viruses work. But good luck. And I but I think I do want to ask you about that, though. So sure. I mean, obviously you did everything you could, right. Like he's got all five autoimmune antibodies, like these markers are sitting there telling you this kid's like getting type one diabetes at some point. And you're doing what you can Yeah, you're supplementing the best you can COVID comes around, you're like, oh God get in the house. Like, you know, that kind of thing. At what point? Do you just like, is there a point where you just say to yourself, like, what are we doing? Like if he's gonna get him? Like, do you ever have that feeling? Like if he's gonna get it, let him get it or, or do you? Or what's my question?

Rayma 24:23
No, I think what you're asking is like, okay, maybe this answers it and if not, you can ask it a different way. But I think we figure everyday will prevent them from getting it is a is a win. And it's so labor intensive. And once it's there, it's there. You know, I guess we've resigned to the idea that all the prevention is worth it. If he buys him more time. Right now we have to he has to be eight before he can we yeah, we got to make it till May. But I think you know, my daughter goes through so much match, you know how it is especially, you know, between Dexcom and pumps, and then they, there's always problems. And so then you're doing shots, and you're up all night and all that stuff. So I think, I think that, you know, everyday that we can save him from having to go through that as

Scott Benner 25:20
you're just trying to you. So it is as simple as you're just trying to create more days without typing.

Rayma 25:25
Correct? Yeah, I just I think that's where I've landed. And, you know, it hit me really hard at our last endo appointment. She's great. We, I really love our, our endocrinologist. And she kind of said something to the effect of, I've just, I've never seen anybody go this long with antibodies and not to diagnosed. And it was like, really a positive. And then afterwards, it hit me really hard. And I really emotionally had a hard time for a few days, you know, just with the reality of it.

Scott Benner 25:55
Yeah. Is that because it felt like there's no way we can keep this going much longer if that's her feeling?

Rayma 26:02
Yeah, I was like, for lack of a better way. It was like, you know, sucks. Oh, I knew it sucked. But denial is a is a wonderful coping mechanism. And it was a compliment. I mean, she didn't mean it in a negative way. No. But but it was still like, afterward, I was emotionally like, like, my cousin had called me with something else emotional. And I just had to tell her like, I can't even talk to you. I can't even articulate what's going on with me right now. But I'm not going to handle anything emotionally. Well, for right, a couple days.

Scott Benner 26:32
If you're looking for support on your thing, all you're gonna get is the crying person on the phone. So please,

Rayma 26:38
it was exactly it was like, I'll apologize. And then I'll just start crying. Mad any like, please, in a couple days? I'm sorry. I didn't mean to make you mad do. Please. How much? Does that understand?

Scott Benner 26:52
How much of your bandwidth do you think you're giving up to keeping your son as safe as you can?

Rayma 26:58
I think autoimmune disease in general takes up the majority of my bandwidth just between myself, you know, Hannah, and Alan. But I think for him, I mean, I'm giving him the vitamins every day, we're constantly washing. I kept him homeschooled, you know, not because I necessarily wanted to, but because I felt like it was better for him with COVID and everything else. So I'd say maybe 20%. And then another probably 40% goes through type one,

Scott Benner 27:33
all I can think about is here's the one I'm imagining you've thought about this? Awesome. I'll tell you what I'm thinking about, you'll tell me if you've considered it, that there are so many people walking around who have not had antibody testing, who will one day get diabetes, but might not. But I've spoken to people who have gotten it in their 50s and in their 40s in their 30s. And like, Do you ever do that? I know you said earlier you think that the the efforts worthwhile? But do you ever think about what if this is in his head for the next 30 years? And he doesn't get diabetes till he's 40 years old? And we spent all of this time?

Rayma 28:11
Oh, yeah, we talked about all the time. And then I have a lot of friends who haven't antibody tested their families at all, and they have siblings or themselves. But I'm a I'm a like to know person. And I believe in science. So I you know, I sold science and genetic testing and everything. And I believe in it. You know, so I am a want to know person. And that's what I figured out over the six plus yours is because you know at first I was like What do you mean, you're not going to test your family? Like what do you mean? You have a younger siblings, older sibling, like it just seemed crazy to me. But then I figured everybody's personalities are a little different. And, you know, respecting those boundaries, but we just set. Somebody sat behind us at lunch yesterday and he was diagnosed at 44. Right? He's wearing a Dexcom and MDI, because it's not quite ready for the pump, because that's how I was like, well, when were you diagnosed? Because he said he's not ready for a pump yet. That's like, okay, so it had only been a couple of years, but he's not carrying around a glucagon. He's not carrying around. vaccine. He, you know, he's got chocolate chip cookies for his lows. So my eye twitch, you know, my eyes twitching while I'm talking to him. You know, and I'm writing I'm Tom texting them our cabin number. You ever ever an emergency starts throwing up through that? I've got got back see me and my room.

Scott Benner 29:33
Well, everybody manages differently. Everyone's understanding of it is different to I mean, honestly, if you can catch a low with a chocolate chip cookie, you I mean, my like, my first guess would be that he doesn't drop fast a lot. So yeah, maybe he's not on MDI, too. Well, maybe he's not using that much insulin. Like maybe yeah, maybe

Rayma 29:54
he's running high. Yeah. A lot of people run real high and that's, you know, different to I tend to I try to keep her no more on range. So we tend to have more lows.

Scott Benner 30:07
I'm certainly not here to tell anybody how to live. You can keep your blood sugar wherever you want to. But I also have had, you know, 100 conversations with people who thought that at 1.2. And now wish they could find a time machine. So, you know,

Rayma 30:22
well that and I figure she's gonna learn, you know, four years old, she's gonna learn how to manage, from how we manage. Yeah. And so I want to try to set the right example, you know, I mean, I know she'll rebel at some point, but hopefully she'll swing back to, you know, I want my one C to be as close to six are, as we can, you know,

Scott Benner 30:41
now, I know earlier, you said that. One doctor told you, they can't believe that your son's had these antibodies for this long and hasn't been diagnosed yet. But, but has anyone like from trial net? said how? Like, what's the longest they've seen somebody with five?

Rayma 30:58
No. And they're always like, they're always shocked when we talk to them, you know, because they gave him the highest percentage at 18 months old that he was greater than 50% to get it in the next five years. And that was when he was 18 months old. And that's the highest percentage, they'll quote. Okay, so they kind of just said he will. And you know, what he keeps asking like, well, when do I get a cell phone, and we always say, Well, when you get diabetes. So we tried to make it positive. There's any positive part in

Scott Benner 31:31
you know, kids getting into Instagram along with this diabetes. So

Rayma 31:36
Hannah's had a phone such an iPhone since she was five. So it's a little bit different, you know, of a thing. So 10 years old, she's pretty good with their phones, you know, and we just tried to make anything any positive joke we can make out of it for him. And, and when he says, No, I did diabetes, we say, well, we don't know, buddy, but you know, chances are really high and your sister gave you a great gift of knowledge. And we're gonna, that's why you take the vitamins, we're gonna keep monitoring you. And that's why you get blood draws, you know, we just try to be as honest as we can, so that he can be mentally prepared.

Scott Benner 32:13
But so by being positive, but how well do you think he's acting? Do you think he's handling it?

Rayma 32:18
Fine. It's the only life you know. So like, he doesn't, you know what I mean? We've been talking about it for so long. And he watches her and sometimes he pretends to have died. You know, he wants to be like his sister. So, you know, if there's an empty pen he's carrying around pretending he's giving themselves shots. He asked to put the Dexcom Yeah, well, okay.

Scott Benner 32:39
Sorry, that was that ice?

Rayma 32:41
Yeah, totally try it the guy. But the you know, I think he doesn't know any different. And, you know, he knows he doesn't want to get it. But at the same time, he pretends he has it. So do you think he pretends

Scott Benner 32:53
because he's trying to prepare himself like practice for what he's gonna need to do?

Rayma 32:57
No, I just think that you always want to be like your older sibling. You know, little.

Scott Benner 33:01
I don't know. I never watched my brothers want to be like me. So I'm not sure.

Rayma 33:06
I don't know. I'm the only child so I can't really talk about it. But I see that a lot of a lot of kids just really want to be like their older siblings. So here's my take. That's what I attributed to

Scott Benner 33:16
knowing that we're on a on a phone call with a guy climbing bottles behind us and I don't know you take all this with a grain of salt. But you're kind of tight Bay, right? Sure. Yeah. Like, like prepared and together. Yeah. I'll tell you right now. We'll never know. I think he's practicing. It might be Yeah, I feel like yeah, that sounds that's what it says. I mean, listen, obviously, I have no idea. That's how it struck me. Like, oh, he must be

Rayma 33:41
smart, too. So he might, you know, he might be subconsciously doing that. He's real smart. He's a little reactive. And you know, hard to handle. Sometimes there's always listen, but he's real intelligent. So

Scott Benner 33:51
he's a boy. He was a boy. Yeah, pretty

Rayma 33:55
much. Yeah. He's a boy. He's but he's real smart. I mean, and he gets things, you know, he's intuitive. Yeah.

Scott Benner 34:02
I like how we've, in the last 20 years, decided to label everything to the point where, like, people like, like, they're like, my son's got like, a lot of energy. And he's hard to handle. I'm like, yeah, yeah. Yeah, that happens a lot.

Rayma 34:19
It's true. It's really true. You know, we try to be patient with it and everything, but it's a lot harder than my daughter.

Scott Benner 34:29
Gotcha. Hey, did he just kill someone with a bottle of vodka?

Rayma 34:32
Now he just took his cart and walked out a little quieter until he loads up for the next round.

Scott Benner 34:39
I was like, he definitely he just comes someone over the head and he's dragging the body out now.

Rayma 34:45
That's hilarious. There's nobody back here yet. So we weren't able to find like a quiet ish place.

Scott Benner 34:51
No, that's fine. Also, you sent me an email that I never saw, which I'm assuming during that email, you might have gone like, you know, can we move this to another date and I just never respond. Aditya so I apologize.

Rayma 35:01
It wasn't a big deal because I knew from the other episodes that you don't respond to your email. So but and I understand that feeling of being overwhelmed by email, so I didn't really think about it. But then when I got the confirmation email yesterday, I was like, oh, okay, we'll try it.

Scott Benner 35:19
So you said you're not getting off the boat? Where all the boat going? And do you get off anywhere?

Rayma 35:25
We're thinking about maybe getting off tomorrow in Haiti, cuz they have their own little private island like beach, we just really wanted to get warm. Get out of the cold weather. And then, since we just had COVID, we wanted to do something, you know, because we had been so limited. So and we'd like to travel. So this seemed like we would try a cruise and see how the kids did. Or you liked it? And

Scott Benner 35:51
are they liking it? So far?

Rayma 35:53
Yeah. Yeah, we're just kinda like, eating, I'm happy not to cook and swimming. And like kids enjoying

Scott Benner 36:00
Can I tell you one of my activities, I have a cruise experience that I'll never forget. And it's the only memory I have of the entire time we were on that ship. It's a kid took us a baby pool. And then everybody packed up and ran away. And they drained the pullout, some poor guy had to wander in there and retrieved the poo. And then they cleaned it and filled it back up. That's my only memory of that trip. So that's for days. And as I think back on it, I can only remember that, but again, nothing else. I hope you have a Pat was the I hope you get a better indorama point. Yeah, better enduring memory than I have.

Rayma 36:47
Yes. So far. It's been good. We've got a couple more days and a nice kind of getaway for everybody. Yeah.

Scott Benner 36:54
Does your daughter have any, like, reactions to the idea that her brother's going to get diabetes? Does she ever talk about that?

Rayma 37:03
No, not really, you know, we've talked a lot about her, her giving us all the gift of knowledge, you know, kind of kept her positive. She really did. I mean, give him the gift, the knowledge so we could try to intervene and change some of the course of my, what I was diagnosed with and how my treatment and management went. So yeah, we just really try to keep it focused on that. And

Scott Benner 37:28
okay, no, I was just wondering if, if like it because if she had concerns, if she had concerns or thoughts about him, I would, I would jump to the conclusion that that would mean that those are the things she thinks about for herself. So I was just wondering if there any of that ever happened, was looking for some No, no, no.

Rayma 37:45
Okay. Nothing that she's verbalized. I mean, I think she has said to him it, you know, it kind of sucks. But then she's pretty quick to talk about then you get a cell phone and you get to eat all these treats. And there's always candy around because we didn't do any candy. We didn't know juice. None of that before. Oh, I just figured they didn't need to. They were little kids. And we ate really healthy.

Scott Benner 38:10
Do you still it just there just happens to be candy now?

Rayma 38:14
I'm mostly Yeah, I mean, we still eat pretty healthy. But we do. I feel like we're much more liberal now. Because I hate to say no all the time about food and make it even more weird. Because I think that you already have a weird relationship with food. When your family's rushing in the middle and I'd be like, Please drink this juice or hurry this yogurt, you know, and they're asleep. Like what? Who would have won the world? Nobody? 99% of everybody else like no, you can't have anything to eat till breakfast. We're like, just do.

Scott Benner 38:49
And most people will never eat a yogurt in their bed at 3am. That's for certain.

Rayma 38:54
Yeah. Or have your parents like be like, Do you drink this juice? If you don't drink this juice? I have to shoot you with this needle. Please drink that. Joe,

Scott Benner 39:02
do you have a lot of lows like that that are like, panicky or no.

Rayma 39:07
We do. We manage tide. And luckily, she's never had any adverse events like from having a low blood sugar. So she'll be you know, 40s and we'll just be up for a couple hours making sure it comes. Is that like just happened to us?

Scott Benner 39:26
Is it a fast drop to 40? Or is it a slow? Yeah, it is a fast drop.

Rayma 39:31
Yeah, like we've done something wrong. Like dammit, what did I do? I gave too much or something. But the Pannu pumps are great. I mean, yeah, I was

Scott Benner 39:41
gonna ask what gear is she using?

Rayma 39:43
She's using a T slim with the IQ control right now. She has an adhesive allergy. Okay, which makes things a little bit more complicated. So the small footprint of the T Slim is much better. Has the board Yeah, she tends to react for the awfully to the off In the pods, but we've used them all

Scott Benner 40:02
using control IQ.

Rayma 40:05
Yep. Which has been a game changer. I mean, turn it off for the lows. That's amazing, right? It was the first like, I think the first couple of weeks or the first good night's sleep I had had years and years where you actually were like, oh, it's in terms of it works like that. Hmm.

Scott Benner 40:23
So when you're talking about like a fast low, yeah. Are you talking about like miscalculating? Like, what what was eaten and giving too much?

Rayma 40:31
Yeah. Yeah, swagging it wrong? You know, that's usually what or for whatever reason her body metabolizes it differently. You know that that time but what what did we just figure out on the cruise here, there's like a thing of sugar free syrup and regular syrup. And she'd been using the trick sugar free syrup. But we had been dosing for the regular syrup, because you didn't realize it was sugar free. Well, then a little things

Scott Benner 40:54
like that. Yeah, that'll make yellow.

Rayma 40:56
Yeah, yeah, you're destined for like straight corn syrup. It's not, it's not there. So then you're like, hurry ice cream, at least at that breakfast. So it's not overnight. And then on the cruise, like he just, you know, you're kind of estimating everything she's eating and guessing. And I'm really we're doing a lot of transition for her to her own management at 10. She's getting ready to go to public school. So, you know, I want her to be able to do her own management and she's going to diabetes camp, but she's also going another camp this summer. That isn't type one. So did you also kind of transition so a lot of times we'll let her does herself, which also makes that but she's on a really hard like, she's on a six to one carb ratio, too. So it's really easy to make a

Scott Benner 41:46
mistake. what's your what's your Basal setup?

Rayma 41:50
She's around her Basal setup around just under 50. Right now she's getting she's she's doing a ton of insulin way the day. Yeah, she's doing I think it was 44.6 or something when I just, of course, the pump just went in the ocean. Right before we're going on the cruise. And I had to get a new pump. overnighted. So I just did all the settings again,

Scott Benner 42:14
through the pump in the ocean. Not on purpose, I assume?

Rayma 42:18
No, she ran in the ocean with it on. Oh, it was supposed to you know, and then double down on the sand and it was done. Can I get the malfunction code?

Scott Benner 42:27
I have to ask you. If you don't have to answer me, but she's 10. Will you tell me how much she weighs?

Rayma 42:35
about 120 pounds? Like an adult? Yeah, like she's the same size as I am.

Scott Benner 42:41
Does she have periods or anything like that?

Rayma 42:43
Not yet.

Unknown Speaker 42:45
Wow. Okay,

Rayma 42:46
lots and lots of insulin. We put her on a little bit of metformin to try to help with sensitivity. really help didn't help. Not really just for whatever reason her body needs ton of insulin. And I think maybe because she was diagnosed before she had no honeymoon period at all. That meant she was dying. When she was diagnosed. She was about 500 So it wasn't you know, I caught it early enough. She seemed a lot insulin. So it only okay, we're trying not to resist. We're trying not to restrict food. Yeah, you know. So

Scott Benner 43:20
she have a like a, like an activity level. That's like she moving around every day. Is she hydrated? Like all those little things are like covered just hydration. There's that stuff?

Rayma 43:33
Well, the hydration is hard because it's a constant nag. But pretty good. I mean, I'm I make them fill up their water balls in the morning. And, you know, they can't have any other drinks till the waters gone. And you know, I'm a little bit of a Yeah, around some of that. But, you know, the hydration is hard with kids. They don't want to drink water they want to play.

Scott Benner 43:54
You know, it has her has her thyroid. I'm sorry if I've forgotten. Does she have thyroid issue?

Rayma 44:00
No, not that not that's ever shown up on bloodwork. But we constantly have checked for that. And I think she has a gluten sensitivity but not celiac. I certainly do. And I noticed that if we don't eat gluten, the numbers are a lot easier to control but then somebody because it's like super easy to control. And she's never over 200 And then some days it's like we can't beat it down with a stick.

Scott Benner 44:22
Hold on one more. I have a couple more questions. So where's your TSH when they test it? I'd have to look

Rayma 44:28
but it's like mid range, like in the fight even on the hi. Hi and yeah,

Scott Benner 44:34
okay, so I'm gonna tell you right now you should medicate anything over a two over a two. So I'm gonna guess that's gonna help with your insulin sensitivity.

Rayma 44:44
Is that the same? Like you'd go to the same endo and talk to them about it?

Scott Benner 44:48
Yeah, I mean, I have an episode you can listen to with Arden's integrative endocrinologist who handles the thyroid of all the people in my family and now a lot of people in the world have heard her talk about it. She would Medicaid over a two, a five a five is? I mean, I would think

Rayma 45:06
her like she's 2.9. I feel like that's the number I'm thinking.

Scott Benner 45:10
Okay, well, that's still that's still, I think that's still needs T three, or T four. Excuse me. Before

Rayma 45:19
I have to push on my endo with that, or I'll have to find another one does to treat.

Scott Benner 45:24
You have any other symptoms of thyroid? Like, do you think she's carrying more weight than she should be?

Rayma 45:31
Yeah, but I think that's part of her genetics. Takes after dad's side of the family, so she kind of hold it a little more. And she loves to eat.

Scott Benner 45:40
Yeah, yeah. What about energy? pretty energetic.

Rayma 45:43
Although she started hit those teeth, like preteen years or she wants to lay around

Scott Benner 45:49
and sleep mood swings, like moody.

Rayma 45:53
No, no. But I definitely think it's worth looking into. Yeah, well, I mean, there's got to be some reason for the the need of so much. And

Scott Benner 46:02
I'm a little like baffled that your endo knows that your 10 year old using two units of insulin an hour as as basil and sees her TSH at a three and can't put those two ideas together and make a decision. Like that's a strange. A strange thing. presser Yeah, and with all the autoimmune you guys have going on. Do you have like you said your husband's side had it too? What? What does he have going on over there?

Rayma 46:30
Um, like lupus and what is the MG Mastis? Okay, so yes, right. saying it wrong. And just what about you're not a ton? To be honest. I'm kind of the only one that I know of besides my cousin. I think she retired issue.

Scott Benner 46:54
Okay. I don't know. Like that. Just seems that seems reasonable to me to look into also. Yeah. Do you think she has trouble with digestion? Yes. 100%. All right. That's gonna be the other piece of it then. So

Rayma 47:09
yeah, yeah, that I've looked into those things over the years. What are your thoughts?

Scott Benner 47:15
Alright, so I just put an episode out about this, because one of the things we figured out for Arden after a long time of thinking, so I'm googling hos.

Rayma 47:26
I was gonna gastroparesis.

Scott Benner 47:28
No, no, your your pancreas has two things it does. It makes insulin and it aids and digestion. And so

Rayma 47:37
emmalin or whatever, right? That's the other one that kills off Amazon. Yeah,

Scott Benner 47:41
there was a while back where people were talking about like taking a drug to help with it. But let me see if this sounds like something that's happening for you. So Arden was not digesting food properly. And she was not going to the bathroom very frequently. Like not not eliminating every day. Does that happen on your on your side over there?

Rayma 48:01
Yes. And that's been since she was like an infant. Yeah. So type one.

Scott Benner 48:06
Right. Arden had that problem for a long time. Does she not go for days and have diarrhea?

Rayma 48:13
No, it's just not that I know of now at 10

Scott Benner 48:16
She don't tell you don't talk to you about her poop. Yeah,

Rayma 48:18
she won't. Yeah, everyone you talk to her. But I think before what would happen it was just she would have stomach ache. Be bloated and and then you'd go in and people would be like, oh, yeah, you know, this is just like school.

Scott Benner 48:33
So we intestine so ardent takes a digestive enzyme and every meal now, just a little tablet that helps you digest your food. Her stomach doesn't hurt anymore. And she added a magnesium oxide to help her go to the bathroom. These are

Rayma 48:51
magnesium, zinc, magnesium oxide, and what's the digestive enzymes.

Scott Benner 48:54
So the one Arden's using is just from a local health food store. So I can't tell to you because unless you live in like my town, you're not going to find it. But I saw how it was helping her and reexamined some of my own issues. And I started taking it too. So I was in a situation where I had to take fiber every day, or I was in trouble. And now I don't have that anymore. I'm using a company called Pure encapsulations digestive enzymes

Rayma 49:25
ultra pure encapsulation, digestive enzymes and

Scott Benner 49:29
there are certainly other competent there are certainly other companies that make it I take one at a regular meal and I take two if I'm eating something high in protein or fat, Arden's doing about the same thing. This is keeping the digestion moving, then the magnesium oxide and be careful because there's different magnesium as you want oxide. And I'm trying to find the dose I

Rayma 49:54
tried a bunch of magnesium all the time. Yeah, well I made I ever doesn't seem to do any different.

Scott Benner 50:00
no fiber is a matter of fact, when your digestion screwed up fiber can back you up more because it also can't digest the fiber.

Rayma 50:06
Yeah, I remember before the type one, we take her into the petri dish and explain it. And they were like, we'll just give her more and like Josh, and I haven't given her anything but fruits and vegetables for days, like, you think like, I'm, I haven't tried all that stuff at home before I came here. Like, I'm here because none of this other stuff is work. And then they said from you relax forever. But then if you read about that, over time, that's really not healthy for you.

Scott Benner 50:28
No, no, that's that those things are supposed to be there fixes for a problem like you think MiraLAX if you get into a bad situation, right? You want to be taken every day. Listen, I'm not a doctor. I'm almost an idiot. But if you had a digestive enzyme to that kid, and the magnesium oxide to get her going, I would be surprised if that didn't also change her insulin needs.

Rayma 50:56
Well, we're definitely going to try that. Yeah. Because

Scott Benner 50:58
that because the food because the food sitting in her longer, that's impacting her blood sugar longer,

Rayma 51:05
right? And sometimes, you're given the insulin and it's too it works too quickly. Do you want me

Scott Benner 51:12
because she's not digest her body has been digested it Yeah. And then on top of that, you're and this is as close as I get to sounding granola, but then your stomach becomes an inhospitable place, and your gut microbiome gets all thrown off. And that does impact a lot of things in your body. So her guts, probably a cesspool in there. And then, you know, she's, oh, my God, I think I think it's possible you sent me an email, like a week from now. And you're like, wow, things are so much different. Because you'll be surprised how quickly the enzymes and the oxide together make the system flow properly. Sorry for the word flow. But like, yeah, so be careful when you start doing it. Like, really, I would start with meals that are not as intensive, like, need their need for insulin, because I don't want you to get into a situation where you're, you have way too much insulin going. And you could you could see that. So well. That would

Rayma 52:09
make sense. Just because if everything else starts working better than you don't need lessons.

Scott Benner 52:13
Yes, yeah. Just, I would keep your head up for that. I'm glad we spoke. I can't tell you how many people I've heard back from after these episodes have come out about how they've tried this, and it's worked for them. So

Rayma 52:27
awesome. Yeah. Well, we would love any help. I mean, it just, I think I don't think people understand like, what a 24/7 365 You know, pain it is to try to figure everything out and, and to do a good job with it all. It's really hard, I think for us, and I feel like, it's a blessing for me to do it for her in a lot of ways until she's older. Do it on our own, because it's a lot to do on your own. Especially like in the middle of the night and everything else.

Scott Benner 52:59
I was gonna say there are some things but I think there are more than some things that I've only been able to figure out because of the podcast because I'm talking with people and somebody will say something I'm like, but that makes sense, like you'd like and then I can incorporate that into my thinking. And I think we came to a number of Arden's like, resolutions. Because I've had so many of these conversations, and I've been getting like hearing people's stories where you're like, Well, you don't digest food, right? You don't Your stomach hurts like, okay, like, the key is to not get like locked into like, well, this happens to people. So I guess this is what's going to happen to her. I was always, always coming from the perspective of I'm going to find a way to figure this out. So

Rayma 53:40
Well, that's the whole idea behind the podcast, right is to like, share the experience, like you're so popular and why people like it so much is that it's like shared your experience. gives you other things to think about. And like you said before, everybody manages differently. Yeah. So you've learned about how other people do things, and what they go through and how they figure things out.

Scott Benner 54:01
It's also about having real conversations, and not just like, going through a bullet list of things. You know, I mean, we've all heard other like media somewhere where you just realize like the person who's there as the guest came in and said, here's the things that I want to talk about, then the host isn't really a host or just reading questions. They're going back and forth. And it's all kind of canned and pre planned. But we don't get to your daughter's stomach issue today. It's not on the list of things that you told me about. Like we don't just have this like conversation. Like I hear things and I'm like, Wait, that doesn't make sense. Like, listen, there's no shame for how much insulin you need. I don't I don't subscribe to that. But it does not make sense that your daughter's using 50 units of basil a day. It just doesn't Yeah, there hadn't hasn't been a

Rayma 54:47
long time. Yeah. We're just talking about it with her Endo. You know, recently she double checked the thyroid. So I'll have to go back and double check that again and see. Yeah, and then I'll try the digestive enzymes.

Scott Benner 54:58
Digestive enzymes, the magnesium oxide and their thyroid, and I'm boy, I want to hear back from you send me send me an email, I'll actually pay attention to it. I swear. Originally, oh, sorry, you didn't I didn't see that last time. I apologize. That's

Rayma 55:13
okay. You're busy. It's a good sign of success.

Scott Benner 55:17
That's really lovely. Well, I, I'm gonna say thank you very much for for giving up an hour of your vacation for this and sharing a interesting perspective of obviously some, some different ideas and things that a lot of people, you know, don't go through. The thing with your son's antibodies is just, it's I'm sorry, it's his life. But it's fascinating to listen to, you know?

Rayma 55:43
Yeah, it should be interesting to see if we can, like if he's in the age of where medicine has caught up with us just enough where we can actually prevent it for him

Scott Benner 55:52
would be interesting. I'll tell you Yeah, like, I know, it would mean a lot to you, even if it got put off for a year or something like that, like, you know, but you know, I asked the question, well, if you go listen to that episode, with Lenny Ramos, I said, Do you have any, like hopes that this can work longer for people? And she can only answer what they've what they've said publicly and what they've, you know, what the FDA has cleared them to say about the drugs, so she can't answer. But I thought, like, I wonder what her real thoughts are about, like, how long might this be able to work for people?

Rayma 56:30
Well, I did listen to another podcast. And I'm trying to think of what the name of it is. But it had one of the researchers that was involved with the clinical trial. And what she did was did data meta analysis, I think it's called where she went back through all the data points. And she was suggesting that you would use it kind of like cancer treatments. So you would give a dose and you would monitor the antibodies. And as the antibodies started to creep back up again, and increase, or a once they started to increase or whatever, you would give another dose. Yeah. And that you would kind of keep it at bay? By managing it that way. And, you know, it seems like a lot because it's what an 11 day and fusion. Yeah. Every day, and you know that, but really, if you think about it, if you only had to do that once every few years, then it would be a lot better. Yeah. What the hell you? Yeah, management of diabetes, you know, you're 65 24/7. So we might be on the edge. And then that might, you know, what, if that prevented it for him, you know, for his whole life. And that would be totally worth it. And they're talking about even having home health. Because we don't live that close to our window. You know, the idea that somebody would just come to the house and do it for us. Seems pretty darn cool. Also

Scott Benner 57:54
seems very reasonable. There's, I mean, there's private companies now that are doing hide, like, like IV hydration is in people's homes. It's like, it's like an expensive boutique thing. But my point is, is it's possible. So

Rayma 58:06
well, I've done it for my pots. So I mean, I know you could do it. Cuz hydration is a huge part of that. And I go every week for infusions. I go into the hospital, but you know, to get the the hydration, because that's keeps the pots at bay. Okay, at least a lot of the symptoms. Yeah. And so like, before I had it covered through my insurance and had gotten the doctor went for it and had like conceded to doing that. I would go into the IV fatigue, like, right before I go do something like on a trip like this, or I did it last year right before going to Disney? You know, because I didn't think I could make it through.

Scott Benner 58:44
You kind of want to get checked back up again. And yeah,

Rayma 58:49
so I went in and had, you know, the two hour hydration. So I think I think we're getting there, you know, with the with being able to do things, but you have to be proactive. I think that's the biggest part that I've learned is that it does take up a lot of your bandwidth, like you were, you asked me before because it's, if you want it to go well, in any of these autoimmune diseases, you really got to be your own advocate. And, and that takes a lot of research. Like a lot of research, a lot of listening to thing love listening to your podcasts, a lot of reading studies, seeing what people are doing. And then the cost benefit ratios, you know, was it worth it?

Scott Benner 59:32
There's no written down answer. Like you're not you're not going to walk into a doctor's office to say I feel like this, this, this and this, and the doctor is gonna go Oh, amazing. That's this right here. It just doesn't work that way. It really had unless

Rayma 59:44
you've been figured out yourself or somebody else and you've been waiting on the waiting list to see that especially. Now that's the only time I've ever seen that happen. I rocked it and finally had saw the right cardiologist and he was like, Well of course you have this you know, but it took me a year to get in with that. And then he was like, it's just like every other patient I see all day long, have the same problems. And it's this. Like, oh, okay,

Scott Benner 1:00:10
but in a regular scenario just walking into your regular doctor, you're gonna get told like whatever's top of their mind or even kind of fashionable to be thinking about at the time. It's a lot of yeah, a lot of hit and miss.

Rayma 1:00:23
If you have pockets you're gonna get anti anxiety medicine right away because they're gonna look at your your heart rate and think, unless that's what happened to me you have fibromyalgia you have anxiety, work too hard here, take some Xanax, and then never helped.

Scott Benner 1:00:37
At one point they made Arden take a Potts test. Because it tilt table. Yeah, because of what ended up being put, she needed T three for her thyroid for

Rayma 1:00:48
it looks like a lot of things. That increased heart rate and, and it really wasn't it until I got on the right Madison, that my life changed, I still have to be really, really careful. And I still don't work, you know, which I miss a lot. But, but it's better. My health is better. You know, but it took forever. It took being intuitive and pushing and and I think a lot of it I owe to my daughter being diagnosed before with diabetes, and I'm trying to figure out why and what what was going on. And then with ln having the antibodies, and then having a background in influencing physicians, you know, hospital systems to change how they think it really kind of all boiled together for me, I'd be able to use for my own my own family. Yeah, cuz otherwise I don't. I don't know how people have the courage to push back on the doctor the way, you know, I had been trained to do for 20 years or two. Read the research papers, because they're hard to read and hard to understand.

Scott Benner 1:01:53
Yeah. Nida Podcast Answer Rhema that's the issue. You just need somebody else to figure out and tell you so

Rayma 1:02:00
well. That's why That's why your own podcast has been so great. Thank you. Yeah, it's been like, it's only been what, maybe five, eight years since podcasts are really popular. So it's just like the internet like prior to that we were all just lost in our own little silos. It's amazing how beneficial it is to be able to share your experience and hear from other people and be like, Oh my gosh, that's exactly what's happening to me. I'm not alone.

Scott Benner 1:02:27
No, I believe in it. I really do. So. Okay, well, I'm gonna say thank you. And, and I'm gonna jump off now I have to do another recording in a little bit. But, but this was really nice to do. I seriously, I'm assuming it's nice and warm up on the deck of that boat, and you're in that bar. So I appreciate this very much.

Rayma 1:02:47
Well, no problem at all. I'm headed there now. And I appreciate you and thanks for having me on. And I'll keep you updated on how things go with everybody. And thanks for the suggestion.

Scott Benner 1:02:56
I would appreciate that. I would really love to know. Yeah, yeah,

Rayma 1:02:59
maybe you'll maybe we'll have more to share with you after Owen goes through the the prevention to we'll see

Scott Benner 1:03:06
great, let me know I'm interested. Okay. Thanks, God appreciate you. Have a great day. Have a great one. Bye bye.

I want to thank the contour next gen blood glucose meter and remind you to go to contour next one.com forward slash juicebox. Get started today may even be able to buy online right there with my link and your stuff could be cheaper in cash than it is. Through your insurance. What do you think of that? Don't also forget about Don't also forget about that's not English, touched by type one.org. Go get your tickets for the upcoming dancing for diabetes event. Thank you so much for listening. And thanks to Raymond for coming on the show and giving us this fantastic story. I'll be back soon with another episode of The Juicebox Podcast.

If you're a loved one has been diagnosed with type one diabetes. The bold beginnings series from the Juicebox Podcast is a terrific place to begin listening. In this series, Jenny Smith and I will go over the questions most often asked at the beginning of type one. Jenny is a certified diabetes care and education specialist who is also a registered and licensed dietitian and Jenny has had type one diabetes for 35 years. My name is Scott Benner and I am the father of a child who has type one diabetes. Our daughter Arden was diagnosed in 2006 at the age of two. I believe that at the core of diabetes management, understanding how insulin works, and how food and other variables impact your system is of the utmost importance. The bold beginning series will lead you down the path Understanding. This series is made up of 24 episodes, and it begins at episode 698. In your podcast, or audio player. I'll list those episodes at the end of this to listen, you can go to juicebox podcast.com. Go up to the menu at the top and choose bold beginnings. Or go into any audio app like Apple podcasts, or Spotify. And then find the episodes that correspond with the series. Those lists again, are at Juicebox Podcast up in the menu or if you're in the private Facebook group in the feature tab, the private Facebook group has over 40,000 members. There are conversations happening right now and 24 hours a day that you'd be incredibly interested in. So don't wait. So don't wait. Check out the bold beginning series today and get started on your journey. Episode 698 defines the ball beginning series 702, honeymooning 706 adult diagnosis 711 and 712 go over diabetes terminologies in Episode 715 We talked about fear of insulin in 719 the 1515 rule episode 723 long acting insulin 727 target range 731 food choices 735 Pre-Bolus 739 carbs 743 stacking 747 flexibility in Episode 751 We discussed school in Episode 755 Exercise 759 guilt, fears hope and expectations. In episode 763 of the bowl beginning series. We talk about community 772 journaling 776 technology and medical supplies. Episode 780 Treating low blood glucose episode 784 dealing with insurance 788 talking to your family and episode 805 illness and ketone management. Check it out. It will change your life