Scott Benner 9/5/22 Scott Benner 9/5/22

#748 Asher

Rebecca's son has type 1 diabetes and autism.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT

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

Scott Benner 0:00
You are listening to Episode 748 of the Juicebox Podcast.

On today's show, we're going to be speaking with Rebecca who is the parent of a child with type one diabetes, who also has autism. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. We're becoming bold with insulin. Are you a US resident who has type one diabetes, or is the caregiver of someone with type one? If you are, please take a few moments to completely fill out the survey AT T one D exchange.org. Forward slash juicebox. I'd like to take a moment to thank you because last month in August of 2022, the Juicebox Podcast hit a momentous milestone, a half a million downloads in one calendar month. Thank you so much for listening for sharing and supporting the show really means the world to me, thank you.

This episode of The Juicebox Podcast is sponsored by us med. Get your diabetes supplies from us med. That's how we do it. To get started, all you have to do is call 888-721-1514. Or go to us med.com Ford slash juice box. When you call that number, or click on that link, you'll be able to get a free benefits check and get started with us med. This episode of the podcast is also sponsored by Ian pen from Medtronic diabetes. If you're looking for an insulin pen that gives you much of the functionality of an insulin pump. You want the in pen in pen today.com Head over learn more and get started today. Hey, Rebecca. Hi. How are you? I'm good. I'm I don't know. It seems really to me.

Rebecca 2:31
Okay, at this point in my life, it's always too early.

Scott Benner 2:35
Yeah, I just don't know. I don't ever. I don't know. I I feel like I'm three years into COVID. Like, nothing's this like, right? Like my, my wife's like, I'm gonna go to work and it's like, okay, so she went, and she comes home she was nobody was there. Magari it's the companies can't even get people to go back to work. They're like, go back to work. And people like, all right, they just don't go from home or they're just not showing up. Let's work from home stuff like these working for home for so long. That they you know, they're just like, like it now. So everyone calls their boss with a reason. We can't come in. I got this, you know, and then the 60 people are supposed to show up at an office building. There's four people there those four people are like, Oh, no coming back if nobody else is coming back, you know. And, and so my wife's like, now she's in the dining room again. And now it's not even the dining room anymore. We got rid of the dining room table like she's using it as a desk she put a sofa in there you know like I'm like I'm like she's never gonna go back. We need time apart.

Rebecca 3:44
I missed I miss working i People are crazy. Ya know?

Scott Benner 3:51
I think the worst thing is my wife is a real like Type A like hardworking person. So all this does, like you would think like oh, it eliminates her commute. And you know, probably saves her all kinds of time. It just gives her three more hours a day to work.

Rebecca 4:05
Hey Scott, I'm sorry Give me one second the nurse is calling me from school ready Hello. You understand but are you there?

Scott Benner 4:16
You know I was

Rebecca 4:19
to be sorry, the data sabot nurse today and she she saw the Dexcom and the phone and the new pod and she's like, which ones which?

Scott Benner 4:31
Well, we'll just tell you what, introduce yourself and we'll then we'll jump right in.

Rebecca 4:35
Um, I am Rebecca burn Werth. I'm a stay at home mama to Asher and archer. And Asher's my little my little diabetic. He's four years old in he's also got autism on top of it. That's why That's why I was message you and like, Hey, I don't know if you'd like to talk to anyone who has autism on top of diabetes, but like I'm willing

Scott Benner 5:01
So ash, first of all, did you name your children so that one day they'd be on a CW show what's going on?

Rebecca 5:08
It was just laziness because we had such a hard time picking out Asher's name. When it came to a little Archer, we're like, we'll just stick with a

Scott Benner 5:15
honestly, did you really just replaced the s with an orange SC, right? Oh, pretty

Rebecca 5:21
much. Yeah, Archer is one more letter, but they're pretty common. They're, I mean, they're pretty close. Yeah, guys, I also like people getting confused. So

Scott Benner 5:31
let's keep most of these letters. And so is Archer younger or older than Ashraf, He's younger. He's too. He's too. Okay. So, I, we're going to start off by saying that what I know about autism fits in a thimble. So I'm going to be asking a lot of questions. Okay.

Rebecca 5:48
Okay. I feel like I'm still learning too. I'm sure I know more than you.

Scott Benner 5:53
Did you imagine? Honestly, Rebecca, at the end of this time, can you imagine if the takeaway was that I knew more about autism than you did?

Rebecca 6:02
I mean, I would actually be happy about that, because I feel like I'm plugged into the type one diabetes community. And I've learned a lot from them. But autism not plugged in with anyone yet. I gotcha. interest. And, and so it's been a lot easier to learn about diabetes than autism. I've also had a harder time with the autism diagnosis than the diabetes one.

Scott Benner 6:24
All right, let's find out about all that. She have a baby? And how quickly did it become evident that Asher had autism.

Rebecca 6:38
I feel like I caught it late. And it's because we've moved six times since Asher was born. And I'm now going to be seven times. So we weren't plugged into a community, we didn't have a lot of people we could hang out with, he didn't hang out with other kids. And my little one just came home, you're probably going to hear him. And so we thought that he was just having a hard time learning to talk because he didn't have a lot of people to talk to. Okay, other than mom and dad. Looking back, I'm I feel like I could have caught it around two years old, instead of when I did, which was this past year, so more around three years old. And plus, it was during COVID. So you top that all off. We moved during COVID and literally met no one at that time. So it's just a lot of no community for him to talk to. Why

Scott Benner 7:39
are you a military family? Are you running from the law, like what's going

Rebecca 7:43
on? I was the National Guard. So I didn't move a lot for that. It's just my husband and we got married. I felt like decently young. We both just gotten out of college and it's just trying to find a stable job since then. And he's a contractor. Okay, so I know, I know, a lot of people will hear contractor know what that means. But it just basically he works for himself and usually is on one to two year contracts with people. So it's been a lot of moving around.

Scott Benner 8:10
Following work. Yeah, yeah. Okay, much. Alright. So what do you say? Well, hold on a second. How old is Asher? When he gets type one.

Rebecca 8:20
He was two and a half years old.

Scott Benner 8:23
Okay, so you, let's figure out how you learned about that. What What were the signs that got you to a type one diagnosis.

Rebecca 8:30
Um, I actually had I had gestational diabetes with little Asher. And Daniel is actually the one that caught it. My husband, I feel like he has had watched me with my pregnancy and connected the dots with Asher he had gotten really thirsty. And he would get tired and just lay down on the ground while trying to play with his toys. And Daniel came to me is like back, I think he might have diabetes. So like, Why No, he's like, yeah, he's does one of the sciences. They drink a lot. And he's just drinking so much and paying so much for my that No, but I of course went and looked, I just didn't want it to do diabetes. I went and started researching. I'm like, okay, so I called the doctor and took him in. And it was one of those instances where the doctor just wouldn't listen to mom. And I told him, I'm like, Hey, I'm worried my son has diabetes. So I brought him in to get tested. And the doctor was like, No, I think he just has a UTI. So bring them in tomorrow, and we'll test them for UTI. I'm like, No, I would like you to test him for diabetes because I really think that's it. These are all the things we've been seeing with him. And we're worried so we'd like to get him tested just to check is like okay, well bring them in in morning. And I brought him in in the morning after he had fasted. He's a hungry baby who is miserable because I'm not letting him to drink anything. It And it was a nurse practitioner who was very sweet instead of the doctor this time and she was like, okay, she sat down. She's like, so you think Asher has a UTI? I'm like, No, I think he has diabetes. And she's like, what? I'm like, Yeah, I brought him in because I want to test them for diabetes. She's like, Oh, I'm so sorry. That's not in my chart at all up? Of course, not. Like, I want him tested for diabetes. I've had him tested for UTIs here recently, and like, I don't think that's it. And she's like, Okay, well, we'll test them for diabetes, and just to, as a backup will test him for UTI. And I'm like, okay, so um, she tested is a one C there, as well as his blood sugar, and his blood sugar was really high. And so she's like, Well, based on the blood sugar, I am worried, but we'll get back to you. And then, of course, had the appointment later. And the same doctor who wouldn't listen to me was at the appointment. I was just so further, he did apologize or anything when he had been such a speaker. And he didn't remember me either.

Scott Benner 11:10
He didn't from how from when it was

Rebecca 11:12
like a week? Late, remember me? That's been that's been most of our experience with with medical stuff since since I felt like I got pregnant.

Scott Benner 11:25
Well, you're probably are you diabetes? I'm sorry. Just let me ask you. Are you always new in the because you're moving so much to meet the doctors not have a chance to get to know you?

Rebecca 11:35
Maybe? Maybe that's it. But even like, I know a lot of people have issues with emergency rooms. But like, I've had issues with the emergency rooms where it almost killed me because I was bleeding internally, and they just don't listen to me. I don't know. Like face that's like, I'm dramatic or something. But they don't listen to me. I don't know.

Scott Benner 11:56
Can we for a second? That's interesting. Do you find that? Do you find that in the rest of your life as well? To people? Is it your voice or your because I've said this on here before but I do more of my business over the phone? Because I have a deep voice.

Rebecca 12:12
But I think maybe I'm too nice. Okay. But I genuinely think a lot of times, I'm just too nice and don't put my foot forward as strong as I should, I guess. But I don't know. When it came to my baby. I was pretty pretty forward. But with myself, I don't. I'm very quick to like jump in to battle for people I care about, but not for me. So they'll walk all over me. But with Asher, I was pretty forceful about the diabetes. They were like No, and have been ever since. Gosh, it's been a lot of fighting even to get the autism diagnosis. But we got it.

Scott Benner 12:48
So you don't have type one in your life from maybe six months or so before? You've you figured out the autism. Is that right?

Rebecca 12:58
Yeah. Let me just work out the time. Yeah, because he got he got diagnosed too. So it was probably about six months till we started really noticing. Okay. And it was because it was because I was looking for a preschool for him. And no one would take him because of diabetes. I was really struggling. And I called the one preschool that was like a peer program where they have a bunch of kids come in that have special needs as well as kids without special needs. And I was trying to get him as one of the kids without special needs of mine was filling out the form. It really sounded to me like Asher was special needs. I was like, oh, no, I don't think they're gonna accept them. And the lady, Becky, she's wonderful. She works at the school. She called me she's like, so I feel like you were very honest on this application. And she's like, I feel like, maybe we can bring after it and get him screened. So he can become one of our students on the other side if you're open to that. And so,

Scott Benner 14:10
Becca, let me ask a couple of questions here because I think I'm following you, but you're not 100% saying it. So you're as you're filling out a form, in your mind trying to be like type one diabetes, that's not special needs. And that forms asking you questions, and you're like, yes, yes. Yeah. Oh, geez. Yes. And then you hand the form to someone else. That person looks at it and says this kid has autism.

Rebecca 14:37
She didn't say he had autism. She said she wanted to get him screen and that she thought she thought speech delays based on what I wrote speech. Have speech delays. Yeah, he has speech delays along with autism because I was like, I understand the difference, but

Scott Benner 14:52
because as I heard that I'm like, but that form is really well designed. If it can just oh yeah, if he could just pluck that out. But so she saw speech to lays okay, then he goes into testing, I'm assuming this is where we get to it.

Rebecca 15:05
Yeah, it was about three months of testing. And at that point I had already started, I took him into the doctor and already started the process of getting them into behavioral psychologists. But there was a year long waiting time to get him like medically diagnosed for autism. So the school diagnose him for me. And he started school there, which has been a huge blessing this past year, he loves it so much in and no one else would take us so he wouldn't have been in school, if not for that. And then he the process of getting him diagnosed medically, I ended up having to travel about four hours away to a psychologist that would allow me to pay out of pocket. And she diagnosed him we paid out of pocket rather than using our insurance to give them an early diagnosis. So I could start getting some more help like speech therapy and occupational therapy, and ABA therapy. So I really had to rush it because I don't know if COVID is affecting the system or if it's always like this, but they say the earlier you intercepted the better and I was already late so I was like I gotta do some digging for, for him.

Scott Benner 16:20
So how do they describe? Again, I'm not I'm a little bit of a neophyte on this here. But is autism designated in severity or levels? Or how to how was it thought of by the, by the medical community?

Rebecca 16:35
From what I understand, it's different everywhere. The psychologist I went to gave him a level two autism out of three. But some parents just based on Facebook, like autism pages that I've followed, say that their their doctors didn't even give them a level, they just say, hey, they have diabetes on the forum, and are not diabetes, I'm sorry, autism, on the form. But we got a level two diagnosis, but not everyone gets a level on the autism spectrum.

Scott Benner 17:06
So if you describe Asher to me, like what are the things that you see that? That now that you know, he's autistic, what do you attribute to autism, in his, in his life,

Rebecca 17:21
his ability to communicate, he communicates different than everyone else. And I think one of the best examples that really helped me understand my son a little more, I was reading a book on autism. I don't remember it, I could send it to you after this. But the guy said he's like, this kid kept, kept saying, whenever he met people, he would quote, the scene from The Wizard of Oz, where the witch comes in the Good Witch. And she says something to Dorothy to like, say hello, but it's like grand and exuberant, and it's a quote, so it's a little longer than hell up. And every time the kid saw someone new, or, or, or saw like his mom after school or something, he would say that, and the doctor helped her understand the doctor wrote the book helped his mother understand. He's telling you Hello, from what he understands to him, Wizard of Oz was just this very memorable moment, where she comes over and says, Hello, in this grand way. And that's how he's learned to say hello. So he's saying hello to you in that moment. And Asher, when he gets really upset, he'll start quoting things that he loves, like he loves Winnie the Pooh for the longest time growing up. And he would quote this part where we got upset when he was upset with me, because I'm like doing diabetes things or I'm not understanding what he's trying to say. He would start quoting this little scene from from Winnie the Pooh. And I didn't understand why for the longest time until I read that book. I'm like, Oh, he's trying to tell me Mommy, I'm upset with you. I'm upset you aren't understanding me. So it's just his his speech has been the biggest thing. I feel like

Scott Benner 19:13
Does that happen with everything? Or is it just big things? I mean, he like does he go into King Lear if he wants to drink of water or

Rebecca 19:23
he speaks of like, one word two words. I'm lucky to get a sentence out of him because he doesn't understand how to form sentences. So if he wants I give him like the sugar free lemonade if he wants lemonade, he's like juice or if if he's gone to the bathroom in his diaper and wants changed, he says body I'm trying to make food. I've got this little board upstairs with all these pictures that he can like run and point to to communicate to me if you want something,

Scott Benner 19:58
and that all works well for him.

Rebecca 20:01
I mean, it could be better, but we started speech therapy. So I think he's one of the autism spectrum children that's actually going to talk to me one day, it's just gonna take a little time. Because he's super smart. It's just his speech is what gets in the way.

Scott Benner 20:21
Is there anything besides the speech that's indicative of autism?

Rebecca 20:25
Um, he does seem to have some issues with fine motor skills, but overall, he's pretty good with it. He just struggles with like a fork, or a spoon. He he's awkward at holding them. But he's, he's not as severe as some autistic children I've seen. And most I feel like I don't, I don't want to, like lump it all because they're all so different. All autistic children, but I know a lot of them aren't very social. They avoid eye contact. They're very scared of the world around them and very sensitive to touch. But I'm blessed in that Ash are loves. He loves cuddling. He loves being held, he loves being hugged. He loves adventure. He loves going new places and seeing new people. So there's a lot to him that that he a lot of the symptoms to autism that he didn't get. Seven the cats. I'm sorry, my cats being really hyper.

Scott Benner 21:28
Okay, we can't see we can't see your cat.

Rebecca 21:33
She's, she's usually pretty scared. If she doesn't speak it out in here to have fun, which is rare. It's

Scott Benner 21:39
just sort of stopped talking. You're like, hey, cats. And I was like, Oh, I'm sorry. For 20 minutes into this. I'm starting to get Bolus apart, Rebecca is gonna lose her mind. Anyway, so. Okay. How is the I'm trying to figure out how to ask this question. I guess so. No, no, no, not not like, I'm going to insult you. I just I'm trying to Rebecca, I don't know, if you realize this, I'm trying to layer a story together. So at the end, you feel like you've been taken on an adventure, but I have not at all, given any thought to this prior to getting this. So

Rebecca 22:17
Toki I enjoy your podcast, thank

Scott Benner 22:19
you. I want to know your husband sees the lethargy and the urination and the drinking. He connects that to your gestational diabetes, something he saw there, you get diagnosed. I mean, at that point, you just have a, you know, you have a young child with diabetes. And are you starting that journey with what like, what do they send you home with this? My first question?

Rebecca 22:48
Um, well, I have just gotten out of the military. And he's a contractor. So we had no health insurance. When Asher got diagnosed, we were in between getting health insurance from the military and then trying to find some for him. So we they sent us home with the bare minimum, while we try to figure out so we came home with a little vial of insulin and, and a bunch of syringes, and reader, which I actually had a ton of, like glucometers at home, as well as ketone test strips. But that was all new to me, because my gestational diabetes wasn't so bad that I needed insulin, I I just had to have a pretty strict diet. I was pregnant. So all of that was pretty new to us. It was a neck and I pretty difficult. No kidding,

Scott Benner 23:51
right. So you dig into that first? And did you find it? I mean, how overwhelming was it for you? New Baby, were you pregnant?

Rebecca 24:06
No, but I had a little I think Archer did math. And he was only three months old at the time, maybe? I don't know. No. Three months old. He would have been it would have been a year and three months.

Scott Benner 24:21
Okay. But that's still that's a very new baby on top of a young a young child who now has diabetes. So you're a little overwhelmed by the way every time you say I was in the National Guard and my husband's a contractor I just assumed he's a hired killer for the government you understand right? No, he's sounds like you're jumping around the country often people but

Rebecca 24:45
he would love me told that he were a total nerd some play like Dungeons and Dragons and he's always a rogue

Scott Benner 24:54
don't even please never tell me what he does. Okay, because I just like it It's like assuming like an under the cover of night you guys like swoop into like Minneapolis and take out a congressman and then just leave. You know what I mean?

Rebecca 25:07
I think when he does, it's pretty cool. But no, he's not like Tom Cruise.

Scott Benner 25:11
Gotcha. So she but he moves around a lot. It sounds like his job is active. Are you kind of on your own with the diabetes? Are you guys doing it together?

Rebecca 25:21
No, he actually works from home. Okay, yeah,

Scott Benner 25:24
he brings the bodies there. That's nice. No, but no. Okay, so So are you guys are sort of in it together? Yeah,

Rebecca 25:35
yeah. He's very involved. Really good, daddy.

Scott Benner 25:40
Excellent. Do you have like CGM now or how are you managing?

Rebecca 25:45
Yeah, we got the Dexcom was one of the first things we got. I feel like, I felt like I got it pretty quick, too. I think it was four months in. Yeah, we've been on the Dexcom for a while now. And I feel like if I had to choose anything, that would be the one thing that I could not do without for him.

Scott Benner 26:05
Does Asher have trouble telling you if he's low or high? Or how he feels?

Rebecca 26:10
I feel like he doesn't really have to. But I don't think he understands it. No. He doesn't understand when he's lower high, he'll just come up to me and ask for juice. There have been a few times very surprised me, like, in the middle of the night before his Dexcom went out off one time he came into the room, which he never does. And asked for juice. So yeah, I think he understands it. But he doesn't know how to tell me.

Scott Benner 26:40
What's that mean? It's obviously it's a major sticking point for for his day to day life, not just not just with diabetes. I'm trying to imagine as he gets older, how he's going to interact with that, like, can he test his blood sugar? Or

Rebecca 26:55
I think he will be able to Yeah, yeah.

Scott Benner 26:58
He understands what's happening in any, like way, often at his age.

Rebecca 27:02
No, I think it maybe 12 or 14, he'll be able to start doing that. That's me hoping he'll be able to start doing it by himself. But like, we can't even get him to get potty trained right now. My two year olds almost potty trained, but we're struggling with Asher. So

Scott Benner 27:21
how does that manifest real life does he have? He's wearing diapers?

Rebecca 27:25
Yeah, he's still wearing pull ups. Okay.

Scott Benner 27:29
And so it's so interesting that he can connect his like anger as an example with cartoon anger on television. And, and it's enough to make him recite something even though he doesn't speak in sentences, usually. But he's not, but he doesn't connect, like the urge to go to the bathroom or going to the bathroom. Yeah, that must be

Rebecca 27:54
going to the bathroom. It's more. He is used to a routine and he doesn't like that getting changed. That's one of the things with autistic children, you tend to get them on a strict routine because they have a hard time understanding the world changing around them. I see so that it's predictable, and they know what's coming next. And so trying to switch him out of pull ups when he's always warm pull ups has been very difficult because he's like, I don't do it that way. I do it this way. Mommy. We don't we don't we don't change things. So I think He's smart. He's just a little stubborn.

Scott Benner 28:34
Saying lady, this is working for me. I gotta be honest with you. I don't know how you feel about it, but I love not going into the bathroom. I don't know why fantastic Have you found that getting your diabetes supplies can be a pain in the butt. I have to but not any longer because now we're getting Arden's diabetes supplies from us med to get a free benefits check, just call 888-721-1514 or go to us med.com forward slash juicebox. US med has served over 1 million diabetes customers since 1996. And they want you to know that they're offering you better service and better care than you're getting now. US med always provides 90 days worth of supplies, and fast and free shipping. They carry everything from insulin pumps and diabetes testing supplies to the latest CGM like the FreeStyle Libre two and the Dexcom G six. Arden gets her Dex comps and her on the pods from us met us met accepts Medicare nationwide and over 800 private insurers. US med is the number one distributor for FreeStyle Libre systems. The number one specialty distributor from the pod dash number one fastest growing tank distributor, the number one rated distributor index com customer service satisfaction surveys. And they are proud of the white glove treatment that they offer their customers. Us med.com forward slash juice box or call 888-721-1514. And that 888 Number is special just for Juicebox Podcast listeners. Now if you decide to go to the website, it's super simple. Here's what it tells you when you get there. Getting started is easy. from the comfort of your own home or office, you can now join over 1 million satisfied customers who rely on our staff of courteous, knowledgeable and trained us met customer care representatives to keep you up to date with your medical and diabetic supplies delivered right to your door. Super simple benefits check name, phone number, email, zip code, and then just hit the button that says Request a free benefits check. It's that easy. Let us med take care of your supplies so you don't have to worry.

Today's episode of The Juicebox Podcast is sponsored by Ian pen from Medtronic diabetes in pen is an insulin pen that offers some of the functionality that you've come to expect from an insulin pump. I know you're thinking, Oh, Scott, please tell me more. Well, I will. Yes, the ink pen is a pen. But it also has an application that lives on your smart device. This app shows you your current glucose levels, meal history, dose history and activity log glucose history, active insulin remaining a dosing calculator and reports that you and your physician can use while you're trying to decide what your next step is. Well, well well, it's not just an insulin pen now is in pen today.com. That's where you're going to find out more information and get started. If you're ready to try the M pen, just fill out the format in pen today.com or do some more reading. There's actually some videos you could check out too about the dosing calculator, the dose reminders, carb counting support, and the digital logbook. So if you want to lighten your diabetes management load, but you're not ready for an insulin pump in pen is probably right for you. In Penn today.com. In Penn also offers 24 hour Technical Support hands on product training and online educational resources. And here's something else that you'll find it in Penn today.com. That is actually very exciting. Now this offer is for people with commercial insurance in terms and conditions do apply. But you may pay as little as $35 for the pen. And that's because Medtronic diabetes does not want cost to be a roadblock to you getting the therapy you need within pen $35 How crazy is that? In pen today.com in pen requires a prescription and settings from your healthcare provider. You must use proper settings and follow the instructions as directed, where you can experience high or low glucose levels. For more safety information where to get started today, you can go to in pen today.com.

I mean, it's interesting. Like it makes you think about how many things you teach a child that they just do because you tell them the beginning until it becomes a habit for them. Except if you can't. If you can't get Asher over that leap that like no go do it here. He's like, Yeah, no, thanks. Yeah, that's interesting. It's insane

Rebecca 33:45
to me because they'd be like, if orchard come first in Azure second, I would have been able to catch Asher's autism so much quicker because Archer, I just watch him and he's like jumping and leaps and bounds as far as communication he, he he's able to put his shoes on and already when Nasser is just now starting to, like, try to get dressed and put his shoes on. He's he, he talks in sentences. Sometimes the nightmare like picks up new words every single day. And he's just so on top of things. And Asher, I look now and Archer is catching up to Asher. And I'm like, wow, I wish I had no more. But well, I wonder your new parent?

Scott Benner 34:29
Yeah, no, I mean, listen, you don't you don't know what you don't know right now.

Rebecca 34:33
I mean, we caught us. I'm proud that we caught his diabetes so early. We caught it really early. But as far as autism, I really wish I could have caught it early, but I feel like we're still fighting to get him through it so

Scott Benner 34:48
well. It makes me wonder if one day as Archer kind of like matures and starts doing some of the things you need to ask her to do. I wonder if Asher won't be able to model it because he's seeing Archer doing it. It

Rebecca 35:01
was already learning language from his brother. Okay, no that much he I see him copying his brother a good amount. So hoping when I potty trained Archer Asher would be like, Oh, what are you doing but so far now not interested? Like doing it even with our jaggedy little I have these little keto cookies and they give him a cookie every time he goes potty and Asher loves those things. I'm like, let your brother's getting cookie. Like whatever. I'm still going in my

Scott Benner 35:30
bathroom and that toilet. I'll give you anything you want. Well, I think maybe although I imagine Archer is probably like in the bathroom. Like why always in the audience when I'm in here? Like, you're like, Look, buddy, look at what's going on in the body. Isn't that great? Now, well, gosh, is that? Is it incredibly taxing for you personally?

Rebecca 35:55
What what part like one partner?

Scott Benner 35:59
Rebecca, your wife?

Rebecca 36:02
I think my husband would say yes, it is.

Scott Benner 36:06
But how do you see your support? Pretty young, right?

Rebecca 36:11
I am 29. So I don't feel that young anymore.

Scott Benner 36:15
You're pretty young. Yeah, it's 29. You've got a four year old.

Rebecca 36:19
So I'm about to turn 30. And Jenny.

Scott Benner 36:23
That's what you're dreading.

Rebecca 36:25
Because everyone's making baby, my husband and his friends joke about it all year long. It feels like a 30 this year. Oh my great.

Scott Benner 36:33
Try to tell my wife she was 50 the other day and she corrected me because she's not she's a couple years younger than that. What's the difference? She goes, there's, there's a lot of difference.

Rebecca 36:43
It's zero,

Scott Benner 36:45
I guess. Trust me, don't matter. But, um, but But I mean, seriously, like day to day? Are you overwhelmed? Are you? I mean, do you lie to yourself? Are you just okay, you know,

Rebecca 37:01
I feel like I will be very honest. I actually I started taking some depression pills, after all of these diagnosis. So I would say that I think it's affected me quite a bit. I think I handled the diabetes, okay. Because I kind of felt in control. Like, I had all of this technology. And like, if I, if I am on top of things, if I, if I wait, can I say what you say, like me aggressive with insulin and whatnot Am I can I think keep his numbers down. And this is something I can control because I'm blessed that he's born now, with all of this technology that makes it so much easier. But then he got his autism diagnosis, and it just kind of felt very much out of my control. I remember that was kind of like the breaking point for me. They, they they told me he had autism. And I took him to the park and just let him play because he just so adventurous, loves playing all day. And they just sat on the there was a rock climbing wall thing that's kind of like a cave. And I just sat on top of that and cried in answer actually came over and actually recognize that I was sad, which he's not good at recognizing emotions one of the time I think that's one of the only times they can think he actually understood I was sad, and came over and just hugged me, he stopped playing and just hugged me for a little bit. But it it made sense because I, I would watch I have a friend named Anna, whose son got diagnosed with diabetes a month before me. And she's, she's the one who showed me your podcast. She's guided me a lot on on his diabetes and helped me a lot on his diabetes. And I would watch her with her son who's very close to Asher's age. And just compare and be like he understands so much she can explain to him he understands what is going on while with Asher he would get so upset while I'm trying to with all but syringes and trying to put the Dexcom on him and the pump on him and and I hated how miserable it was making him and the fact that I couldn't explain to him I was doing it out of love for him. And the desire for him to stay here with me as long as he can and be healthy because of my efforts while he's on stage. So that was the hardest part for me with his autism was just not being able to tell him baby I'm hurting you because they love you. In so the communication with autism has been the hardest part. That's that was the breaking point when I realized oh, this is it. He's not gonna learn to Tucked in a few months, it's gonna be a while. Do you?

Scott Benner 40:05
Do you? Do you believe that he understands you? He just can't tell you he understands? Where do you think

Rebecca 40:12
he understands more than I think he does? I don't think he understands his diabetes and what it is and that he's different, which I think is okay. I think it's okay, I think he's gonna be oblivious a lot of the times to how different he is. And that in that way, autism might be a bit of a blessing, because he's like, Oh, I'm just gonna go play now. And he's not going to notice, oh, I'm wearing these robot parts, and they aren't. He's just gonna be like, Oh, why aren't you doing this? Okay, and go on with his life. But it's just the early years that are gonna be really hard on me, because I can't talk to him. But I think I will get to talk to him at some point.

Scott Benner 40:54
Well, can you? Are you able to communicate with them in other ways? Is the I mean, you said he's not great with seeing other people's emotions. But can you hug him? Or?

Rebecca 41:05
Yeah, he loves cuddling. He understands like, I can give him directions be like, go get your shoes, or did he come here and work on night night? And a lot of that he's come to understand just the basic every day because we've had him on a strict schedule. And so he understands what's coming next. He knows what I'm saying. But then there are times where the says something from a cartoon or something good in he says it in a correct circumstance, but like it actually makes sense. I'm like, Whoa, okay. You learn something my boss and baby Good job. So it's just it's hit or miss all day. It's full of more surprises than I think most most parents I know. Most parents get a lot of surprises on the daily but Asher it's it's big leaps and bounds. With the smallest things. I get to celebrate small things with him all the time. Like oh my gosh, you just said three words together. That's awesome, baby. Good job. So

Scott Benner 42:01
cool. Okay, well, I'm finding this overwhelming I'm sorry, but that's pretty unfair, isn't it? an hour, I'm just gonna, like, you know, I'm taking my dog to a candle and you're still gonna be there with Asher. And I'm like, oh, gosh, this is a lot. Is there any autism in either of your extended families?

Rebecca 42:27
No, not diagnosed. Um, my husband and I think that maybe there could be like some very, what's I'm trying to think of a way to word this, but not severe, not severe autism. Um, but it's not diagnosed. It's just that generation right before autism really became more pronounced in in the world.

Scott Benner 42:56
How about diabetes or other autoimmune diseases?

Rebecca 42:59
Um, my grandpa, I don't remember. I feel like he was like 29 when he got type one diabetes, so my grandpa did get diabetes. Other than him? I don't know of any other diabetes. I know that according to everyone, I'm pre diabetic, but I don't have type one. Mine would be type two because of the gestational diabetes.

Scott Benner 43:21
Right. Okay. Well,

Rebecca 43:23
hey. What's okay, yeah, my my husband's great grandfather was diabetic, I guess. So it's on both sides. Type one. There's a lot of type one. There's a lot of autoimmune diseases on my husband's side to not diabetes with a lot of autoimmune diseases that are really weird ones that don't ask me to name

Scott Benner 43:43
you don't even you don't have examples. Yeah.

Rebecca 43:46
I'm sure my husband could do another one. Your uncle has honey. includes this.

Scott Benner 43:56
You trying to make me look foolish while I'm googling kleos

Rebecca 43:58
this month? I can't say it. Yeah, I can't say it. I got it. There chat. There's a chat. Let me see.

Scott Benner 44:06
It's a it's a spine disorder.

Rebecca 44:09
Yeah, it's like I know that it kind of like all of his spine molds together over time. Um, it's very painful. And he has to like constantly stay on top of working out and stuff to keep it from getting like,

Scott Benner 44:25
trying to see us together to see if they're calling it autoimmune. And I'll say it I'll do my best to say it in a second. Ankylosing Spondylitis

Rebecca 44:40
Ankylosing Spondylitis that sounds that's how my husband said at least initially pretty good but

Scott Benner 44:45
I'm not great with words is both an autoimmune type of arthritis and a chronic inflammation inflammatory disease and autoimmune disease develops in your body. Yeah, I don't need to be told about it. I mean, diseases thanks. It's more common among men usually begins in early The adulthood symptoms typically appear include reduced flexibility in the spine, reduces flexibility eventually results in hunched forward posture pain, the back and joints is also common. Interesting.

Rebecca 45:14
Daniel actually has an autoimmune disease I always forget because I know I know he's he doesn't like it but I don't notice it is what is it honey vitiligo vitiligo what? Yeah, it's what Michael Jackson had. Yeah, no, no. All over the place and I don't really care. I think he's still handsome.

Scott Benner 45:39
So his his skin is like he has less pigment in some places. Yeah. Okay.

Rebecca 45:44
I feel like he's still white though. It's not noticeable to me. So

Scott Benner 45:48
Daniel is so white. You can see this middle Lago

Rebecca 45:53
we my friends joke, you know, um, but it's goodness. The vampire movie that came out when I was younger Twilight. Okay. And word from Twilight. A lot of my friends say that he looks like that pale white like he's not quite that failed. But he is pretty pale. He could definitely be Edward on Halloween.

Scott Benner 46:13
Either think a t shirt. I'm so white. You can see my vitiligo was hilarious.

Rebecca 46:19
And that is pretty great.

Scott Benner 46:20
I purposefully stopped myself because you were like, you know, the vampire movie that came out when you were when I was young. And my brain jumped to Interview with a Vampire. And then you said Twilight, I was like, Oh, God, I'm so much older than Rebecca.

Rebecca 46:37
I love Twilight. Oh, goodness.

Scott Benner 46:42
Did you know I did. I'm gonna try to find out what your Interview with a Vampire came out because I'm feeling 19 9402 years before that. And by the way, I wasn't all that young in 1994. I was Oh, good. I was like 25 Maybe?

Rebecca 46:59
Oh, yeah. You're a bit older. I think maybe my parents age.

Scott Benner 47:06
Really? Um, how old are your parents? They're about 50 years old. Yep. I could be your father Rebecca. That can't be true. Hold on. Just that you're 29 Let me get a pen real quick. Homozygous 50. A put those 29 under it. Now the nines. You carry the one I get one. And then this becomes a four. Oh, yeah, I guess maybe I could be. Well, that's upsetting. Jesus? What do you try to bum me out?

Rebecca 47:39
No, does the I'm bummed about being 33

Scott Benner 47:43
I can't believe that I can be your father. That's so terrible. I gotta give up soon, I guess right? It's over? No, no,

Rebecca 47:56
no. You got a lot left.

Scott Benner 47:59
How old is the oldest person? You could be the mother of?

Rebecca 48:03
Oh, goodness. Let me think. I mean, if I could have had a kid pretty young,

Scott Benner 48:10
right? Let's say you have a team practice. I'd say you're right. You have a baby team. You can have a 14 year old right now. I could, how would that make you feel?

Rebecca 48:20
I find it terrifying. Well, that's

Scott Benner 48:21
how I feel thinking. I

Rebecca 48:25
mean, it's not because like, it's not because if it just it's the idea of owning it, or having a team that that's the part that terrifies people.

Scott Benner 48:35
You know, I do? No idea what it's like,

Rebecca 48:38
I didn't want low girls for a reason. Oh, guess what?

Scott Benner 48:41
It's not a pleasure, that all hope is kind of terrible. You say something to her. And she's like, I'm not doing that. Like wait. And then I don't know what to do. Because that's the part where my dad would have like, thrown me through a wall. So I don't even know what to say, you know, like, Wait a minute. You're just not gonna do it. Please do it. Now. That guy. I don't know what to say. What's next? I mean, when reasoning when I mean look at the world when reasoning doesn't work. We pretty much jump right to war. And so I don't know what the

Rebecca 49:20
ground is pretty quick on that. But how does that even happen?

Scott Benner 49:22
Like I'm not gonna let her go to school or do her homework or I don't know the whole things. I'm

Rebecca 49:27
not gonna go to school when she's been out of school for it like

Scott Benner 49:31
Yeah, I know. Right? Basically been in school for high school. I can't wait till she gets to college. And she's like, Oh my God every day. It's it's crazy. Okay, so All right. Let's go back to your for a second. Did the you felt depressed? And then you tried. What did they give you?

Rebecca 49:52
Oh, goodness.

Scott Benner 49:53
I like like, you don't quite know the name of anything, Rebecca. I don't. You're like my husband.

Rebecca 49:58
My brain I Oh, I some things. I'm just like, yeah, that can go.

Scott Benner 50:03
Oh no, I find it kind of delightful. You're like my husband has an autoimmune disease. I don't know what it's called. Hey, baby. What's that thing called? The why? Oh, he's handsome. Don't worry about it. So anyway, so you're on something? Did it help?

Rebecca 50:20
Yeah, it's Zoloft. That's what it is. Yeah, it's when I was very weary about going on, on pills, because they scare me if I like I saw a lot of friends like turn pretty. turn bad on pills. So it scared me. But she said that this was the least had the least amount of side effects and was the safest one that's working for you. She can? Yeah, she said she can give it to pregnant moms. So she's like, I feel like this is good. And I've been a lot better on it. I'm much better. My husband whenever I snap on him, or, like crying over dumb things. He's like, did you take your pill?

Scott Benner 51:01
First, I would like to ask, Is it funny? It's just like with diabetes? Like, are you low? I don't want to yell if you're low. If you've took the pill, I don't know what to say all the sudden, you take the pill that I know that I'm you're actually mad and I'm scared. Oh, my gosh. This seems like a no brainer question. But let me just ask it anyway. Any plans on having more children?

Rebecca 51:26
No. I might adopt, I really want to adopt. It's just I feel like I need to get Asher in a place where it's a little easier on me and him before we look into adopting,

Scott Benner 51:38
and then some more difficult questions, do you? I mean, diabetes is one of those things where I think parents minds race ahead, like what happens when they go to college or get married? Right. But autism, I would imagine is that times a million.

Rebecca 51:55
Yeah. I felt like I struggled a lot with the fact that I was worried. I might have a kid in the house forever. I feel like I've reached a point where I think he's going to be very independent and go off on his own at some time. I think he'll need a guiding hand sometimes. But I'm Mom, I'm always here. I'm always a call away. I don't. I think he'll be okay. As far as that goes.

Scott Benner 52:25
Tell me more about that concern. Is that a concern that I'll be 133 years old, and my 60 year old will be living with me kind of feeling or is it? Is it a feeling like your life won't get to move on? Or his life won't get to move on? Or like, what's the real? What's the fear? Like it

Rebecca 52:43
makes me sound so selfish but my life? No, I was I was very independent, very adventurous. And I'm and I'm a go getter. I loved I was valedictorian, and join the military and work three jobs to get through school. Like I was always very active. And I've had to be a stay at home mom for my kids. And I'm learning the blessings in that but i It's not easy for me at all.

Scott Benner 53:14
I can give it a lot of way.

Rebecca 53:16
Yeah. Yeah. I am adventurous. And I'm I know, I tell myself that like when they're like 12 and above, we could go on adventures together. But I'm having a very hard time at this age.

Scott Benner 53:33
Would you like some some stark truths from my life that Oh, no, no, I know. Everything you hope for the future doesn't happen. I believe I've learned that already. But here's the good news. If you just accept that it really does get easier. It turns out that the problem is with ready. It's hope that kills you

Rebecca 53:57
know, there's okay. There's a what is it? Pandora's box. You know that story? Hope was the only thing left in the box. And I remember I majored in English and I remember having to write a paper on whether I thought that was because home was good and didn't need to be released. Or else or hope was so bad that one thing got left from the box of all these terrible things because it was like it was too bad to let loose. Man

Scott Benner 54:30
so the taking the I was gonna say Joking aside, I'm not joking, but let me give it better context, I guess. So I became a stay at home father in 2000. Okay, now we all know that was 22 years ago. My God when you were seven years old, but okay. And it happened for us, like not a plan. So we were married, and then we noticed we were pregnant and And then we noticed there was going to be a baby. And you know, during the pregnancy, it became one of our jobs. It felt to me to go look into daycares. And so after because I worked more locally, I would come home in the afternoon and go check out daycare centers. And one day, I just came home to Kelly and I was like, I really don't want to put the baby in daycare, it made me feel like we were kenneling it, you know what I mean, hadn't even met the baby yet. I was already like, looking for a place to like, put it. And that seemed kind of wrong. To me. It made me make this outlandish statement to my wife, I was like, You should stay home with the baby when the baby comes. Now. If you could have gone back 22 years and met us, you would know that Kelly was our only hope for decent income. You know, saying that she should not work was sort of, I mean, she laughed directly at me when I told her. She's like how she's like, I think she said, If I quit my job, we're gonna live in a trailer, like somewhere like in a swamp or something like that. I forget how she put it exactly, because that's what you're gonna be able to afford, which I found emasculating. But point taken. She was right. And then she said, I think you'd be a great stay at home dad, why don't you stop working and stay home with the baby? And I was like, okay, so you know, you're young, and just like, whatever I got. Alright, that makes sense. I think in the end, the swing was like, $900, back then, like, you know what I mean, we lost 900 bucks for me quitting my job every month, which was just not very much back then. You know, like, it was just like, we're like, whatever. And so, and you start doing the other bills, you know, like, Well, geez, by the time you take out gas, and me going to lunch, and like, you know, this might be a breakeven, we might be able to do this. So baby comes, here comes coal. And now I handle it in a very kind of functional way. Like, I'm like, treating him like a project or a job or something that has to happen, right, and I'm just doing the things. And I was pretty miserable for a while, because I kept thinking about all the stuff that I wanted to do with my life that seemed like there was no possible way I was ever going to do now. And it wasn't until I made kind of the conscious decision to find joy in being his dad, that that stuff stopped mattering. And it turned out that I had had all these, I mean, call them dreams, but that's the wrong word. I had all these ideas of things that I thought would be great to do. And they seemed like possibilities to me, which was great. So because they seem tangible. It felt like I lost them. But in truth, I wasn't any of those things that I thought I wanted to be or try or do. They were just, they were just out in front of me kind of like a carrot on a stick, like, oh, maybe you could write a book where maybe you could do this. And suddenly you're raising a baby, and you can't do any of that, like, you know, none of that's happening. And then when I made his happiness, or his accomplishments, or our accomplishments together my goal, then suddenly I was I was actually reaching my goals, it was actually better than hoping to be a thing that I probably was never going to be anyway. Because I could actually do those things. And it was helping him. And so when I found joy in being a stay at home dad, I was able to let go of that feeling that I had lost something that makes sense. No, it

Rebecca 58:38
does. I felt like someone here recently said something that gave me a lot of peace. We're in we're in the process of selling our home, and I had to travel to Pennsylvania to look for our next home. While Daniel stayed here with the kiddos. And, um, when I went up there a realtor, my mother in law, she loves talking and she was telling her realtor or story over the past few years, which has been kind of crazy. And we're believers and she's like, it was crazy the way things lined up, like God had everything in order. And she told her testimony and then the lady looked at me she's like, I hope you know, it's very clear that you're doing something right. You're living right. And it just kind of like put me at peace and like you know, I'm I don't like being a stay at home mom, but I'm doing the right thing for my kids and the right thing for my husband. And well and I'm seeing the blessings as a result of that. No,

Scott Benner 59:47
no, that's lovely. Does Asher travel well like Does he like date outings and things like that? Are they difficult Are they pretty easy?

Rebecca 59:56
Um, he loves going places for you. I mean, In for me, not really, because that's something you can learn from autism. He a lot of the questions on like, surveys and stuff I had to fill out was like, Does it seem like your kid is deaf sometimes do you say his or her name and they just don't seem to hear you. And you think they might be deaf? And I knew Asher was a deaf, but I'm like, yeah, definitely. Because I'll say his name over and over. And he's just in a whole other dimension or something. Yeah, and, and it's because they just are. So when Chuck rain didn't just so zoned in on one thing, I feel like that's why a lot of autistic, a lot of geniuses have had autism, because they're so good at focusing on one thing, but when we go out places that zoning out is so stressful, because he can just zone out on something and he's done it and I've got a handle. I literally had a nightmare like two nights ago about having to go save one son, who was about to get hit by a car, but leave Asher who doesn't listen, and does it like, can't hear me and I'm probably gonna lose him the moment I let go of him. And it just really, it just shows what an anxious person I am. That stupid nightmare drives me nuts. But it's really hard just because he doesn't hear me and it's not like he's ignoring me. He's just in another world. It's full of wonder,

Scott Benner 1:01:35
I have to tell you, I regretted saying does Asher travel well, because I felt like I was categorizing him like a, I don't know, like egg salad sandwich. Like, does he hold up throughout the day? But I didn't mean it that way. I just meant, like, can you go out and be adventurous just on a different level. But at the moment, it's not easy for you?

Rebecca 1:01:56
Yeah, it's not easy. I try. I got like a Skype zone membership for them for a little while we'd go there and play. It just needs to be like a controlled, a controlled area that I can keep tabs on him like an indoor playground or a gate. I always go to the gated parks and stuff for them to play. Like, give me a second Archer, honey. Put that back, please. Thank you. Thank you.

Scott Benner 1:02:25
Hi. That's alright, to get your weed. I'm just kidding.

Rebecca 1:02:30
We're in the process are appraisers coming in today. So I have decorations out that I don't always put out and he of course was touching on them. That's why I don't always put them out.

Scott Benner 1:02:39
I can't believe you're like moving again and buy homes. So you're well.

Rebecca 1:02:46
Okay. This one we're hoping is a permanent move for a little while. Lease this this home we thought was going to be for a little while. But this home we bought before Asher got diabetes and autism and all these things, okay. And we don't know anyone here. And we just want a support group. So we're moving back to where my husband and I met where his parents live and where his best friend live. And we have our church and just people so maybe I can actually go on a date with my husband sometimes. And actually be able to have him I went to urgent care here recently. And in he couldn't go with me. He had to stay with the kids. I'm like, so we're like be what people nearby that can learn about Ashers disease, his grandparents can learn about it, his best friend can learn about it that way if anything ever happens to us. He has someone to go to

Scott Benner 1:03:45
right. Oh, that makes sense. I know that feeling of like, you know, I think it's called divide and conquer. But in the moment, it doesn't feel like that. It's like you do this? I'll do that. You stop this from burning down. I'll stop this from flooding. And I'll see you later tonight. And you kind of move in different directions. I mean, listen, it's it's what the right way. I feel like I feel like people would expect me to be like trying to be uplifting to you, but I don't think there's any reason to both

Rebecca 1:04:14
be honest. Yeah. Terry.

Scott Benner 1:04:19
Things aren't exactly rosy. But I think there's a way to think there's a way to live that life. Because you're obviously going to I mean, what is the alternative? And you're gonna go to the mall and not come home, right? Like there's no other like, Have you considered that by the way?

Rebecca 1:04:39
I joke to my husband about it. Like I could have gone to the grocery store. I

Scott Benner 1:04:43
gotta go get Scratchers and cigarettes. I'll be back. I do think there's a way to live like really well. Yeah, outside of these things. It's just it's just a mindset, really, and it's not similar to the one you had when you were 23, and you were like, I'll probably get married and we'll just like, do cool stuff. And me and the kid and the husband will jump off a mountain together. And it's gonna,

Rebecca 1:05:10
like show you the type of person I was and still am somewhere in there. My like 10 year goal was to major in English, and then go teach for a few years because I got a grant for teaching and in Alaska for two years, because I needed two years of experience in teaching to go teach at an international school overseas in Thailand. And I intended to move every few years from one country to the next teaching English. Because I love traveling.

Scott Benner 1:05:44
So were you going to take your husband with you? Or what was the plan there?

Rebecca 1:05:48
I did it. I did it play another husband. I fell in love. I completely changed that plan, which is okay. It's fine. Don't

Scott Benner 1:06:00
worry everything.

Rebecca 1:06:01
I mean, I'm looking back at him. Because I feel like at the beginning of our marriage, it caused some issues. But no, I did love my husband.

Scott Benner 1:06:10
I definitely know my wife didn't want to get married. And I'm not certain she loves me. So it's not like we've been together a really long time. But my wife said, she used to think about her life as she wanted to live in an apartment in New York City with white furniture. That's how she would put it white furniture. I think that was her way of saying like, by herself,

Rebecca 1:06:33
he literally stood the annual white couch the other day, and I was like, I wish I could have this

Scott Benner 1:06:40
you can't Rebecca gonna be white anymore. So the new house have a little ground outside it done.

Rebecca 1:06:49
I almost didn't look at the new house because the pictures showed just like this miniature space out back and like, it looks like it has no yard. And I'm happy I went because there was like a whole lot to the left of the house. That was a very big space. That was perfect place for the kids gonna be the first thing we're gonna do, we're gonna fence it in. And I keep saying I want to get the boys to playground so that we can all just hang out outside, right?

Scott Benner 1:07:17
Or you can release them outside and their release. Drink and see how that goes with your depression medication. I'm just kidding.

Rebecca 1:07:25
We're gonna get a dog. Oh,

Scott Benner 1:07:28
Rebecca, you need more things to take care of. You should definitely get

Rebecca 1:07:31
love and talk. Oh my goodness, my parents bought me mom when I was 16 after a really bad breakup, because I'm an emotional wreck all the time, apparently in life. And that dog was like a therapy therapy dog for me.

Scott Benner 1:07:45
My baby, make sure it has no health issues. Please. Don't even get one that like itches.

Rebecca 1:07:50
I'm gonna get diabetes.

Scott Benner 1:07:53
Your dog will definitely get diabetes, its legs will fall off. It'll need you to carry it somewhere. Oh, no, like, yeah, you'll be like, Oh, this is fine. I know how to do all this work. Wow, this is? It's interesting, because you're so new to all of this, that you almost don't know what you're doing yet. Anyway. But yeah, it's interesting to hear you're feeling your way through it, you know,

Rebecca 1:08:19
learning. Maybe I maybe I help a parent by that's working through the whole autism diagnosis thing, because there. I will say something I didn't know. There are schools in every single state that are early intervention schools that are free from the state for autistic children, or just special needs children.

Scott Benner 1:08:40
How do you find that?

Rebecca 1:08:41
I stumbled upon it. But I looked it up in Pennsylvania. I looked up early intervention schools. And what was another search that I did for that? Special Needs schools for young children? Yeah, there were a ton of resources online when I googled that for Pennsylvania since we're moving up there. And now

Scott Benner 1:09:04
I see it early intervention programs. I just Googled early intervention services. And yeah, it comes up for like every state. Yeah. All right. Well, there you go. Well, we did something good than if we got that.

Rebecca 1:09:18
Yeah. Something I stumbled upon it by pure luck, but maybe someone else can hear this and be like, Oh, yay. so helpful.

Scott Benner 1:09:26
You said, online. There's there are there communities. I mean, are you in my Facebook group is an example.

Rebecca 1:09:33
I am in your Facebook group. And there are autism like Facebook groups. I actually deleted all of my social media though, for my mental health. It's helped a lot so I can't direct people to good Facebook group for autism anymore.

Scott Benner 1:09:52
Tell me about that a little bit. So you were finding community online but something about being online wasn't good for you? I just

Rebecca 1:09:58
feel like since co All of it and like the election and everything, everything has gotten so toxic on social media, that it just ended up stressing me out every every day that I got on social media and looked. It's like someone's lashing out at someone who has an opinion on something and just seeing all the hate was really discouraging to me and just seeing all the crap that's going on in the world, but I feel like I'm dealing with all this crap in my own life as like, you know, I'm gonna, I'm gonna go ahead and delete this might have been a lot better since I deleted it. My husband likes it too. So he's like, Oh, my wife is actually paying attention to me and not scrolling through Facebook. So

Scott Benner 1:10:41
Honey, honey, honey, well, have you not found Have you not

Rebecca 1:10:45
found wordly wordly What's that?

Scott Benner 1:10:49
I don't know. It's this thing that I see my wife doing? You fill in like, you get like, Oh, is

Rebecca 1:10:54
it a game?

Scott Benner 1:10:55
Thank you. I think it's like it on the New York Times website if I'm not mistaken, but I guess you get. Alright. Let me see if I can understand. I think you get six opportunities to spell a five letter word. And within that, you have to say, God, how bad I am. Wordle if it works, looks like Wordle Yeah, like Wordle le so

Rebecca 1:11:20
it's one of those like games again, I forget what was the one that came out? It was like a bunch of numbers that look just like this. And I was obsessed with it and played it non stop.

Scott Benner 1:11:30
I don't know. I just have not played this

Rebecca 1:11:33
and I'm not gonna learn it because I can tell will be a problem.

Scott Benner 1:11:37
Oh, look at it. You're like Kelly, Kelly. Kelly. She's my I'm trying to find a five letter word like, why? Like I married you. Oh my god. Hold on a second. Can we speak for five letter words? Do we come back to me please? Yeah, we're that or she just likes like there's like this Tetra. See kind of game. She's like, this is very relaxing. We just putting shapes together. And now it's like, what are you doing? Anyway, I understand like, it is, I mean, there's so much good online. And but there's so much of what you described. And sometimes it's hard that you're walking a path trying to get to the good stuff. And you've got to dodge in and out of everything else. And it isn't I'm

Rebecca 1:12:17
also I'm also a people pleaser, if I was in direct sales, and I felt like it made me very popular. Got me a lot of ladies who love just messaging me and love my life. And that was good. That was beautiful. I loved I loved spending time and meeting new people that way. But it got really overwhelming because I felt like I had to respond to literally everyone.

Scott Benner 1:12:39
Oh, you have that pressure? Yeah. So I used to feel like my, my Facebook group is huge. And I used to feel like, like, I used to feel like oh my god, like what am I? Like, am I supposed to answer all these? Like, how would I do that? And then and then I was able to let go of that. But I got lucky because the group can kind of like help itself. And you know, but I know. There's a pressure you're like, well, somebody asked, like I'm tagged in something. It's almost like it's almost like somebody's texting you you're not answering them. You're like they're expecting an answer. Like, you know, if I'm open to being tagged in something, then I should follow through. And it does get overwhelming. I found though that keeping online simple. My first rule on the Facebook page is I'm going to read it to you it says Be nice, be helpful, be human, treat people the way you would hope to be treated if you break the rules that I'm going to have to kick you and I don't want to be involved in both. I really just like, you know, oh God, just please don't make me. I don't want to be involved make me need to stop. Like there are people who know me. Well. We're like, sometimes you post something. And the way I read it is it says, Well, you all just leave me alone. And it's just it's a strange thing, but it's tough because it gives and takes you know and yeah, but if it's if it's bad for you, then it's bad for you.

Rebecca 1:14:04
Yeah. I felt like it was okay until Asher got sick did bluey stop honey. What's up? Hi. He finally reached his limit. He's

Scott Benner 1:14:16
just like, you're done. Lady. It's over now. Tell the guy to buy Well, that's fine. Rebecca, tell me Is there anything that we didn't talk about that you wanted to? Um, I don't think so. Know that you're okay with this guy headed

Rebecca 1:14:30
off? Yeah, I think I hit all the key points.

Scott Benner 1:14:34
I will let you go find out what's up with Blue's Clues. Is that what I'm talking?

Rebecca 1:14:38
Louie Louie? Yeah, it's really cute. Honestly, just sit and watch the episodes are super short a Disney plus and I think you'll get a kick out of it because you're a stay at home dad.

Scott Benner 1:14:49
I like that you say you don't like it but you're like this blue is good. It's good watch and

Rebecca 1:14:53
so it literally I will happily sit and watch this with my kids. How

Scott Benner 1:14:58
do I spell bluee Me What's wrong?

Rebecca 1:15:01
Oh, he paused. Oh no, it's very cute. Like, there are episodes of him, like the dad taking his kids to like take out or something. And, and he's tell them don't play with that. Don't pee in the bush. Don't do this. Don't do this, like totally stressed out. And the lady comes out with his takeout and she's like, just give it a few minutes. I'll bring the rest of it out in a minute. And the kids are like, what does that mean? Daddy's like, go play in the water. It's really cute.

Scott Benner 1:15:36
I'm glad you like it. I think you're gonna like more of this as time passes. You're like, Listen, I'm gonna tell you something. I could probably sing the theme songs to every TV show that was popular for kids when my kids were little. And you wouldn't have no idea what I was talking about. Like, like Rolie polie. Olie

Rebecca 1:15:57
oh my gosh, no, I know. Rolie polie.

Scott Benner 1:16:00
I know. I know OG Blue's Clues, right with Steve, like not this other person who you think is then it's not really

Rebecca 1:16:07
realized that because I could be your daughter. I probably know all of those. I don't speak as I will. But ages that I do them.

Scott Benner 1:16:16
I once went to a live staging of bear in the big blue house. What do you think of that?

Rebecca 1:16:22
That is awesome. No, it's not very jealous.

Scott Benner 1:16:27
It's definitely not awesome. Are you really I love

Rebecca 1:16:31
to bear the big blue house. We didn't have TV. So we only got to watch it would be with our grandparents house. And that was what I always wanted to

Scott Benner 1:16:38
watch. Wait a minute, they didn't let you have TV?

Rebecca 1:16:41
No, we grew up in Idaho. And we played outside all day. Bare feet. So

Scott Benner 1:16:46
oh my gosh, I can't believe you didn't have TV. I don't even know how to like process that. I felt like you just said I was abused as a child.

Rebecca 1:16:57
We have VHS tapes, but like you don't you only watch them like a few times. And you're done. So we spent most of our time playing

Scott Benner 1:17:04
how many states have you lived in? Do you know?

Rebecca 1:17:07
Um, I Okay, goodness, born in Hawaii, to Texas, grew up in Idaho, moved to Pennsylvania, lived in Oregon for a little while. Went back to Pennsylvania, went to Virginia for a few years, ended up in Maryland, then went to Georgia. Then went to Pennsylvania again, then Maryland again now Virginia, and I'm going back to Pennsylvania.

Scott Benner 1:17:35
She that was 13 different homes. Three times in Pennsylvania twice in Maryland. Is that right? You lived in? Is that 10 Different states then?

Rebecca 1:17:45
I don't know. I lost my fingers.

Scott Benner 1:17:49
Um, so if you all saw me with my fingers just now you'd be you'd probably be sad for yourself that you're listening to the podcast.

Rebecca 1:17:56
I was enjoying listening to you do math on your age. I wasn't gonna interrupt you. Because I found it quite humorous.

Scott Benner 1:18:03
Believe how old I am. All right. Rebecca, get the hell out of you bumming me out. And and you're making me feel good. Because you're, you're um,

Rebecca 1:18:12
I'm a hot mess Express. Yeah,

Scott Benner 1:18:13
but you seem okay. Yeah. Yeah. I mean, I think that's really is the takeaway from it. It's been better. Well, yeah, hell.

Rebecca 1:18:22
No. I mean, like, I've been better than I was.

Scott Benner 1:18:25
You're like, you're getting better. But yes, I

Rebecca 1:18:27
have been better.

Scott Benner 1:18:28
Imagine. I mean, at least in Hawaii, Hawaii. Were born Hawaii.

Rebecca 1:18:33
Yeah, that sounds like all I remember is the cockroach. So that's the only memory I have a boy.

Scott Benner 1:18:39
So it's not as nice as I wish more.

Rebecca 1:18:41
No, I'm my first memory was mom cuz they were military. And we were in military housing. And I remember going up the stairs with mom and mom saw this huge cockroach and like turned into Spider Woman, and ended up in a corner holding onto the railing like standing up on it somehow yelling for my dad. That's my first memory.

Scott Benner 1:19:03
He told me that the people that I was counting on to, to protect the country are afraid of cockroaches because apparently breaking down my entire spiders that I was in the military. So yeah, you're breaking down my whole construct of my safety. So you're saying that like a foreign country would just have to show up with a bunch of cockroaches and spiders and we'd lose a war immediately. No, I think we might. Great. Everything's fine, Rebecca. Alright, listen. Keep your head down.

Normally, I'd be like, what's our takeaway here, but our takeaway is just that you're laughing? And I think that's good. Yeah, you know, all right. Well, I really appreciate you doing this with me. Thank

Rebecca 1:19:49
you. Yeah. Thanks for having me.

Scott Benner 1:19:51
Have a good time.

Rebecca 1:19:52
I did. I enjoyed myself. I like talking. So that's perfect that you're talking to someone that As an adult, so

Scott Benner 1:20:02
Alright, hold on one second

a huge thanks to one of our sponsors in pen from Medtronic diabetes. Don't forget to go to in pen today.com To get started with the pen. I'd also like to thank you s Med, and remind you to go to us med.com forward slash juice box, or call 888-721-1514 To get your free benefits check. And of course, we want to thank Rebecca for coming on the show and sharing her life and her story with us.

If you're into helping people, especially people with type one diabetes, I'd like to ask you to go to T one D exchange.org. Forward slash juicebox. When you get there, fill out the survey completely. And you've helped somebody, all you need to be is a US resident who has type one diabetes, or is the caregiver of someone with type one, t one D exchange.org. Forward slash juicebox. Join the registry, complete the survey, help someone with type one diabetes, help yourself perhaps and support the Juicebox Podcast, you will do all of this in the fewer than 10 minutes that it will take to go to that link and complete the survey. The survey is very simple. You'll know all the answers to all the questions. It is also HIPAA compliant and completely anonymous, T one D exchange.org. Forward slash juicebox. There are links in the show notes of your podcast player and links at juicebox podcast.com. To all of the sponsors. And to T one D exchange. When you take the time to click on my links or to type them in a browser. You're telling the sponsors that you came from the Juicebox Podcast. And that is a wonderful way to support the show. Are you looking for a vibrant and intelligent community around diabetes? look no farther than the Facebook page, the private Facebook page for the Juicebox Podcast. It's called Juicebox Podcast, type one diabetes. The group has over 28,000 members. And those members are responsible for between 70 and 10 new posts every day on the Facebook page. Every conceivable conversation around diabetes is happening at Juicebox Podcast, type one diabetes on Facebook, you're gonna see great questions, thoughtful answers, and supportive people. No matter if you're an adult living with type one diabetes are the caregiver of someone with type one. This group is for you. Doesn't matter if you eat low carb, or high carb or somewhere in between your questions and thoughts are welcome on our Facebook page. I hope you check it out. Last little bit if you're looking for the diabetes Pro Tip series, or the defining diabetes series or any of the other multitude of series that exists within the podcast, you can find them in a number of ways. They are at juicebox podcast.com. They are at diabetes pro tip.com. And if you belong to the private Facebook group, you can find them listed in the featured tab. Now if you're enjoying the podcast, please consider sharing it with someone else that helps the podcast grow more than anything word of mouth is definitely how the show has become what it is. If you have already shared it with everybody you can think of and you have bought it on the pod or index calm or supported one of the other sponsors. You've done the T one D exchange survey. And now you're looking for another way to give back to the podcast. Super simple. A five star rating and a thoughtful review in whichever audio app you listen in would be amazing. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#747 Bold Beginnings: Flexibility

Scott Benner 9/2/22 Scott Benner 9/2/22

#746 In Vitro, Pregnancy and Loss

Karen has type 1 diabetes and is here to talk about IVF, pregnancy and miscarriage.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 746 of the Juicebox Podcast.

Karen has type one diabetes, and she's on the show today to talk about what it's like to manage blood sugar's through pregnancy. We're also going to talk about her experience with in vitro fertilization. And I'd like to warn you before the episode begins, that Karen expected to be pregnant while she was recording this, Karen was pregnant previous to when we recorded this episode. But she very sadly and unexpectedly was not when we actually recorded. I didn't want that to be a surprise for you when you heard it. So I just wanted to tell you upfront, if you're a US citizen who has type one diabetes, or is the caregiver of someone with type one, it would mean a lot to me and to many other people. If you went to T one D exchange.org. Forward slash juice box and filled out their survey, it's super simple to do, it does not take long at all. You'll be helping people with type one, you'll probably be helping yourself and you'll be supporting the Juicebox Podcast, there's a lot of good that goes into those 10 minutes at T one D exchange.org. Forward slash juicebox.

Today's episode of The Juicebox Podcast is sponsored by touched by type one, a great diabetes organization who has asked me to ask you to check them out. And you can do that at touched by type one.org or by finding them on Facebook, or Instagram. The podcast is also sponsored today by Ian pen from Medtronic diabetes in pen is an insulin pen that does much more than you expect. Learn more about it at in pen today.com The ink pen may cost you as little as $35. Listen to the end for details. At our house, we buy Ardens Omnipod and Dexcom supplies from us Med and you could to call 888-721-1514 or go to U S med.com forward slash juicebox. To get your free benefits check. You can find links to us med in Pen and Touch by type one in the show notes of your podcast player, or at juicebox podcast.com. All I need from you is to click on my links or to type them into a browser if you're interested in anything you hear in the advertisements. Doing that supports the show. And I very much appreciate it.

Karen 2:53
Yeah, my name is Karen and I was diagnosed with type one. When I was 35. No family history. I have a cousin once removed who has type one, but I don't think that's close enough for the doctors to even count it as family history. So it was a shock and No, no obvious symptoms. I didn't have the normal like paying a lot or thirsty or that kind of stuff. I went to the doctor for a totally unrelated reason. And then they caught it. And so yeah, it was it was shocking. And I'm happy to talk about that in more detail. But I'm in and I reached out to you to maybe come on the podcast because I was doing IVF and my husband and I were doing IVF to try to get pregnant and yeah a lot actually has happened since I wrote you so we can we can Yeah, we can go and

Scott Benner 3:59
pick it apart for sure. I want to tell you that I count a cousin once removed as a family history. Okay, I would count I would count celiac thyroid a grandmother who was tired all the time I would count on you so okay you don't I mean like it's it's weird how autoimmune pops up in people's lives but I get what you're saying like in your in your circle in your family circle there's there's nothing like that. Are there other autoimmune issues that you found?

Karen 4:27
Not Not that I know of. But then for me after the diabetes then we've had realized the infertility issues and that they think was primary ovarian insufficiency which is basically like premature menopause which is an autoimmune problem. So you know, I know when you have one autoimmune issue, you're more likely to have multiple and so I guess so I've had I've had now that pop up but no other autoimmune disorders in my family.

Scott Benner 4:59
You You don't want your autoimmune diseases to be lonely. That's a Yeah, definitely. I mean, just think of, I guess, by themselves with no one to talk to. So how old are you now?

Karen 5:10
37.

Scott Benner 5:12
So this is just all in the last two years. Yeah. Prior to your diagnosis and learning all this, had you had children or thought about having children before?

Karen 5:22
I mean, I always wanted children, but I just took a while to find the guy who I wanted to have children with. And so we just got married two and a half years ago in August. And, and so it was at that point that, you know, we started to try to have kids

Scott Benner 5:39
Oh, you got diabetes for you as a wedding gift?

Karen 5:42
I did. And actually, so I had undiagnosed terrible de diabetes at my wedding. And I didn't know and I'm so glad, in retrospect, that I didn't know at that time. And then it was, like six weeks later, but I was diagnosed,

Scott Benner 6:00
you know, my wife, and I have two children. And she's still looking for a guy worthy of having kids with. So wait a minute. So you had were you just like, thrilled you look great in your wedding dress? Or what was going on there? How long?

Karen 6:15
Yeah, actually. So I said, No, no, obvious symptoms, but I had lost weight. And so that was just very convenient. Yeah, it was nice. And then for my wedding, I had lost, I lost weight. But I lived my husband and I lived in Rwanda, the year, that year prior. And so I just chalked up the weight loss to like a different diet and living in, you know, Africa. And I had a couple infections like an eye infection, I had, like, come back a few times when we were in Rwanda, but again, I just, like, chalked it up to like different, you know, I don't know, different bacterias and viruses and a different country. And so I didn't, I never suspected, you know, diabetes, I guess I got back. And it had been two months. And I hadn't put weight back on. So maybe I should have maybe that should have been a red flag to me. But

Scott Benner 7:13
we had a reason. Otherwise, right? Like, it's all you need is like one thing to go, oh, yeah, it's probably that. And then you can kind of let it go.

Karen 7:21
Yeah, and my husband's a doctor. And so like, I remember also, I had some numbness in my toes. And I told them that, but it was he was like, Well, you know, take a hot shower and see if that helps and stuff. But we just didn't we never thought critically enough. You know about these little things. Yeah. And then I just I went to the doctor because my knees hurt when I run. And I wanted a physical therapy referral. And my doctor knew that I wanted to get pregnant. So she was like, Well, do you want to reduce blood test just to have kind of your baseline records? Your baseline is on record, because when you get pregnant things can get out of whack. So it was like, Sure, I guess. I mean, we could have just as easily not done it. And then we did it. And then she called me back that afternoon and was like, Whoa, I need you to come back in right now. I don't know if like this is a mistake or what but my blood sugar I think was 448. And my, my Quincy was 13.2 was diagnosed

Scott Benner 8:21
Wow, you had had it for a while. So you know, for people who listen to the show a lot. They heard you say Rwanda and they thought, oh God, we're never going to get into her story because Scott's going to ask why she was in Rwanda, which I am going to ask so can we we do that first? Did you have to go all the way to, to Rwanda to find a doctor to marry or what are you doing?

Karen 8:40
Now, um, I met my husband before Rwanda and, and I, I'm a journalism professor, and we and I wanted to apply for a Fulbright fellowship. And so I when I met my now husband, you know, I told them, I'm gonna I'm gonna apply for these Fulbright's when we just started dating, I was like, Hey, you should apply to and we looked and there were some medical ones available to in Rwanda. And so we both applied to be Fulbright Scholars independently, like we didn't tell them we were dating or anything. And we both got it. So we both went. And we're Fulbright scholars in Rwanda together for a year, which was just like, awesome. It was set we were so lucky to both both get that that opportunity and then the same country so we're both teaching and researching in Rwanda for a year.

Scott Benner 9:35
That's crazy. Hey, for the remainder of the podcast I'm gonna refer to your husband is Dr. warm shower just so you know. That's what he got out of medical school. It's hilarious. Okay, so you're home now from Rwanda, you're having these problems. You end up with the doctor, you know, because you wanted to, you wanted a physical therapy appointment. That's an odd route to it. Have you come back to her office? That heart right? You said, Yeah. And yeah. How does it go from there?

Karen 10:07
And then she finger picks me again. And it's still super high. And she said, you know, you have diabetes. And I, you know, like, I think probably most Americans might not and not my knowledge, diabetes at the time was, you know, next to nothing. And so I was like, what else? Could it be like? What else could high blood sugar be? You know, what are some other things? Like me? Yeah. Nothing means you have diabetes. I was I think I was really just in disbelief. And. And she called, we called my husband and, and it was kind of like, do you want to come, you know, over here, like, for this talk, and I was kind of like, oh, I don't I don't think that's necessary. Like, I definitely was in shock and didn't understand the the gravity gravity of what this meant. And, and but yeah, so she, you know, taught me how to prick my finger and how to give an insulin shot and sent me home with you know, prescriptions to stop and get insulin and and get a CGM she sent me home with what's the one that's not Dexcom Libra. Yeah, she sent me home with a FreeStyle Libre. So I had that for the first couple months. And yeah, I mean, I was just really surprised and then just started, like digging into try to learn as much as I could about diabetes. And then of course, had an appointment shortly after with an endo. And so when we got when she first diagnosed me, she didn't know for sure if I was type one, or type two or 1.5 kind of situation. But then it was. Then my endo said I was a type one. Although I've recently changed endocrinologist, because I moved and my new endo was like maybe Euro, Lada. And maybe we'll test for that, but not until after a lot of this having babies stuff is over. But anyway, I was diagnosed with type one. And then yeah, thankfully, my endocrinologist was wonderful. And mean, he spent three hours with me that first appointment. And even every appointment after that was, I don't know, an hour and a half or something. I hear a lot of people complain about their, their diabetes team. And I was really lucky to have excellent doctors and educators and stuff. But still, it just shocks me how little information you get, even, even when I had several hours. There's just so much to know, and so much to learn. I mean, I think when people are diagnosed, they automatically need to be enrolled in a class, you know, where I don't know, we just spend the next six months or something learning about diabetes and how to manage it, because there's just and I understand why they can't tell you everything in that first appointment. It would just be overwhelming. But there's so much to know,

Scott Benner 13:21
I was really shocked that you said that she just gave you like a script for insolence and needles and sent you home. That was I just expected. You know, I talked to so many people who are getting children diagnosed and then they go to the hospital after that. And the hospital brings their blood sugar down slowly and helps them understand everything. And I would have mentioned earlier but I was imagining your husband rooting around the house looking for the receipt for you to see if you were still in warranty or not. So

Karen 13:52
I know I was like, Oh my God. Yeah, it was like when we said in sickness and in health. I don't think you were gonna you thought this was gonna happen so soon.

Scott Benner 14:01
I was just trying to be positive. I didn't know it was gonna be next week. Yeah, yeah, no, no, I yeah, that's, that's fascinating. I can I take a slight detour there. Did you have the wherewithal to think about that, like, how long did you had you two been together prior to your marriage?

Karen 14:17
Um, we had been together? What, like two and a half years? I mean, not. Not terribly long time. And but no, I mean, there was no, there was no question. He definitely didn't want to leave me because of my diagnosis. But I was lucky that that he is a doctor because he, you know, understood it. And it was also just an incredible resource for me to you know, I was asking him 100 questions a day in the beginning about it. And he's been, I mean, just a saint with handling it all. And so I've been very, very lucky and in the doctor diagnosing and she was was fantastic. And she, you know, explained as much as she could to me, I don't know why they didn't send me the hospital, I guess because I felt fine. I wasn't in decay or anything. And she set me up to like, first just give like four units a day and for a couple of days, then up to six and up into eight, you know, until it leveled out. And so she, I mean, she told me how to how to slowly bring my blood sugar down. And she also knows my husband, and he's a doctor. So I feel like I definitely had, you know, people who knew what was going on and, and I knew what, what to do as much as I could at that point. But yeah, I have I have wondered, like, how do you decide when to send somebody to the hospital or not when they're being diagnosed? If they're not in DKA,

Scott Benner 15:47
you may find it interesting to know that when I speak to people who have a medical background, they feel that doctors assume they know what they're doing. So I did wonder about that. Did she know your husband was a doctor and maybe she just thought like, ah, Dr. warm shower will take care of it. That'll be it. You know, like that kind of thing.

Karen 16:05
She knew my husband, but she was she I mean, she was great at explaining things to me and getting me in with an endo as soon as she could. And, but I have definitely had that in their appointments with with diabetes appointments, or just or the baby related appointments and stuff that the doctors when my husband's there and they know he's a doctor, they definitely talk at a higher level. And sometimes I have to be like, Okay, bring that back down for me. I'm not a doctor

Scott Benner 16:34
journalism major over here. Yeah. I didn't study the bigger words. Well, that's okay. So how long did it take you? Or maybe I'm speaking for you? You don't? But how long did it take you to feel comfortable? Like you knew what you were doing?

Karen 16:51
Um, good question. I mean, I think pretty quick, I guess relatively, I mean, I got my so my agency was 13.2. And I was diagnosed. And then the next time it was taken, which I think was three months later, it was 6.5. So I came down right away. And I, I mean, at first I was on the shots. And it's funny, when I was first diagnosed, my instinct was, Oh, I hope I don't need an insulin pump like that just, I just associate an insulin pump with like, I don't know, being sick. And I don't want this device hooked to me. And so and then as I learned more about what it was about type one diabetes, then it became clear, like, Oh, I definitely want an insulin pump. And I'm so lucky to be able to have an insulin pump. And so I got that maybe three months or less after I was diagnosed. So I had the CGM from the get go. Although in a couple months, I switched to Dexcom. And then I had the pump just a couple of months after being diagnosed and, and I'm on Omni pod and that, I mean that those both helped a lot. I really liked the flexibility of being on the pump, being able to, you know, not have to plan ahead. Like if I don't know that I want to have dessert, I'm not going to have to give an extra shot. If I decide I want to have dessert later. Like it's just easier to put it into the pump. So I mean, I guess within by the time I got all the gear like I felt, I felt pretty comfortable.

Scott Benner 18:35
I mean, you're able to see came down remarkably. And then you upgraded your gear, are you interested? Or do you even know about the Omnipod? Five was just announced the other day that for the algorithm?

Karen 18:50
So yeah, I am aware. But um, I so my, my endocrinologist actually recommends that I not go to the automatic system. Well, I'm trying to have a baby because my control is better than he thinks it would be on automated system because they have to. And he didn't know about the Omni pod. But the the other companies Yeah, you had to set or you could not adjust. I think you had to set your goal blood sugar at 100. I think and so, you know, if you were sitting at then it would give you give you sugar, or you know, it would want you to go back up. Right. And so he was saying that, you know, he actually thought that my control is better without that and because you didn't know about Omnipod but figured it would be that same standard of 100. So I mean, do you do you know

Scott Benner 19:51
that no. So it is Ollie pods of 110. If I'm not mistaken, I think control like us like 112 and a half which is I must, I don't know, it's an odd number. But yeah, they're both in their first generation still. So I think that was what they could safely and kind of quickly get through the FDA as a target. But you're right. If you're doing better than that on your own. You're gonna want your agency lower while you're trying to get pregnant for sure.

Karen 20:17
Yeah, and I definitely want to go to the automated system when, you know, I don't know, maybe when they come out with the next one, and you can have a lower range or something, because I do think, of course, that would help with like eliminating the nighttime alarms and stuff like that. But yeah, but right now, that's my doctor didn't recommend that. And it makes makes good sense to me. Because yeah, if I'm sitting at I don't want to go up. Yeah,

Scott Benner 20:42
no, I mean, now that you said, it makes sense to me as well. So you guys, I mean, I'm assuming like, You're not listening. You're not old, Karen. But you're at that spot where you were kind of like, I guess, if we're gonna have kids, maybe we ought to do it, right. How long do you try before you think like, I'm getting tired of having sex, and we're not pregnant yet? Like, like we? I mean, did that happen? Were you just like, Oh, my God, we're gonna have to do it again? Or, what's the length of time before you start wondering what's up?

Karen 21:12
I think for like your average couple, I think they want you to try for at least a year before you start looking into it. But for us, because I knew I was going to be a high risk pregnancy because of the diabetes. And because of my age, I think six months was enough for them to say, okay, we can start doing some tests. And so yeah, I think it was. I'm trying to think of the timeline, though, it might have been, it might have been a year, or a little less than a year before we actually got all the testing. And then, you know, then they said that we had a very low, like, less than 1% chance of conceiving naturally. And they recommended IVF, which was another big shock to us. And so then we will took some time to decide if we wanted to do that or not. And then we decided to. And so that's why I thought it would be helpful to come on and talk about like, how to manage your diabetes when you're going through IVF because you're taking all these shots and being pumped with hormones, and it affects your your insulin needs and everything.

Scott Benner 22:28
Why definitely. Yeah, but wait, since I'm sorry, something

Karen 22:32
well, now now. And we can still talk about that. Now. I feel like I'm remembering not as much as I hoped. I'd remember for that conversation, because of all what's happened since then. So since then, I did two rounds of IVF. And then we had our first embryo transferred, they call it like implanted, and it worked, and I got pregnant. And then I was five months pregnant, and we lost the baby just

Scott Benner 23:04
okay, sorry. Sorry, I didn't know. And now I'm thinking of every stupid thing I've said over the last few minutes, and I'm getting

Karen 23:11
no, no, no, it's all good. There was just less than two weeks ago. So it's still very raw. But um, yeah, we lost the baby due to genetic abnormalities, which was really shocking, because we did as part of the IVF process we had our embryos genetically tested, which should check which checks for genetic abnormalities, and we, you know, only transferred the embryo that was genetically normal. So we thought we had ruled that out, we knew that I you know, because of having diabetes, I was at higher risk of other pregnancy issues like preeclampsia and that kind of stuff. But that was the one thing we thought, okay, well, we're in the clear for at least we don't have to worry about, you know, genetic abnormalities, and then and then that's what happened. So it turned out we were just in like the one to 2%, who had the false positive originally, and, and so we just lost the baby. And so that is another thing that affects your, your blood sugar. And so I feel, in my mind, it's much fresher now to talk about diabetes management during the first trimester of pregnancy and into the second trimester and then with pregnancy loss. But also, of course, go back and talk about the IVF process to

Scott Benner 24:47
today's episode of The Juicebox Podcast is sponsored by Ian pen from Medtronic diabetes in pen is an insulin pen that offers some of the functionality that you've come to expect from it. insulin pump. I know you're thinking, Oh, Scott, please tell me more. Well, I will. Yes, the pen is a pen. But it also has an application that lives on your smart device. This app shows you your current glucose levels, meal history, dose history, and activity log glucose history, active insulin remaining a dosing calculator, and reports that you and your physician can use. While you're trying to decide what your next step is. Well, well, well, it's not just an insulin pen, now is in Penn today.com. That's where you're going to find out more information and get started. If you're ready to try the M pen, just fill out the form at M pen today.com. Or do some more reading. There's actually some videos you could check out too about the dosing calculator, the dose reminders, card counting support, and the digital logbook. So if you want to lighten your diabetes management load, but you're not ready for an insulin pump in Penn is probably right for you. In Penn today.com in Penn also offers 24 hour Technical Support hands on product training, and online educational resources. And here's something else that you'll find it in Penn today.com. That is actually very exciting. Now this offer is for people with commercial insurance and terms and conditions do apply, but you may pay as little as $35 for the in pen. And that's because Medtronic diabetes does not want costs to be a roadblock to you getting the therapy you need within Penn $35 How crazy is that? In Penn today.com in Penn requires a prescription and settings from your health care provider. You must use proper settings and follow the instructions as directed, or you could experience high or low glucose levels. For more safety information where to get started today, you can go to in Penn today.com Have you found that getting your diabetes supplies can be a pain in the butt. I have to but not any longer because now we're getting Ardens diabetes supplies from us med to get a free benefits check, just call 888-721-1514 or go to us med.com forward slash juicebox. US med has served over 1 million diabetes customers since 1996. And they want you to know that they're offering you better service and better care than you're getting now. US med always provides 90 days worth of supplies, and fast and free shipping. They carry everything from insulin pumps and diabetes testing supplies to the latest CGM like the FreeStyle Libre two and the Dexcom G six. Arden gets her Dex comps and her on the pods from us med. US med accepts Medicare nationwide and over 800 private insurers. US med is the number one distributor for FreeStyle Libre systems. The number one specialty distributor for Omni pod dash, number one fastest growing tandem distributor, the number one rated distributor index com customer service satisfaction surveys. And they are proud of the white glove treatment that they offer their customers. Us med.com forward slash juice box or call 888-721-1514. And that 888 Number is special just for Juicebox Podcast listeners. Now if you decide to go to the website, it's super simple. Here's what it tells you when you get there. Getting started is easy. from the comfort of your own home or office, you can now join over 1 million satisfied customers who rely on our staff of courteous knowledgeable and trained us med customer care representatives to keep you up to date with your medical and diabetic supplies delivered right to your door. Super simple benefits check name, phone number, email, zip code, and then just hit the button that says Request a free benefits check. It's that easy. Let us med take care of your supplies so you don't have to worry

I would like to do whatever you're comfortable with actually I'm sitting here I'm I'm shocked that you didn't just cancel this I thought about

Karen 29:23
it this is I have been like off work and this has been the first time that I need to be like on you know since since and so I was a little I thought about canceling it but um I don't know. I mean, I didn't want to like have to wait another, you know, months and months and I just thought I mean maybe there are other people out there who you know have lost a pregnancy and would benefit from hearing about like blood sugar perspective of it all. So

Scott Benner 29:57
that is very kind of you I really applaud Shit that very much. So we'll just tread lightly. And we'll talk about what you're comfortable with. But yeah, I mean, I'm so sorry, because I feel like you're gonna walk all through this, but you know, so you, they fertilize an egg outside of you, obviously. And then they they say that there's eggs that are ready to be implanted. You put it in? And how, like, how many times did you have to try that implantation process? Was it just once?

Karen 30:30
Yeah, so, um, yes, it was the first time we we had done that. So we got lucky it worked on our first time. So they they retrieved the eggs. So which is a surgery, which is another thing where I was like, giving the anesthesiologist my phone to look at my eggs calm the whole time, because that was the first time I am. Actually that was one anyway. So you do the egg retrieval, they retrieve the eggs, and then they mix it with the sperm in the lab. And then the embryos grow for five days, and then they freeze them. And then they biopsy them to check for the genetic problems. And then and at each step of the process, you you lose eggs and embryos. So it's like maybe you get a dozen eggs, when you're there retrieved. And then you know, only half of them fertilized, and then only 10 70% of them grow properly in the lab for the five days, and then only 40% of them come back genetically normal. So by the time we got to the end of the process, we had just one supposedly genetically normal embryo, which is the one we implanted. And we did another egg retrieval. And from that, in the end, we ended up with two supposedly, genetically normal embryos. So we still have two that are frozen, and we'll try to transfer those, you know, in a few months when it's safe to do so. But um, so, yeah, so but we had only had the one embryo transfer and, and there was about a 60% chance that it would result in a pregnancy and so it did so we thought Yeah, IVF can be really awful for a lot of people so we thought that like okay, we we've had a pretty good go IVF you know, we did two rounds and then we got pregnant in our first try. And so we thought like, you know, worked out okay for us.

Scott Benner 32:47
Yeah, I'm gonna have to just ask a childless question. It's not going to leave my head when they fertilize the embryo you bring that sperm in fresh or do you have it prepackaged from another day? How does that

Karen 32:58
fresh is ideal if that's not possible, you can have the sample given earlier and then they freeze it but fresh is what they prefer. And actually is kind of a funny story because my husband had a surgery for heartburn he had surgery today days before my my egg retrieval, and then so he came home from the hospital. It's like a major operation. He came from the hospital the day before like the night before my egg retrieval. And then the next morning like at like 6am I had to get ready and go in and he had to give a sample then and so he was like totally you know, fresh home from the hospital after surgery and like that is the last thing you want to do get woken up at 6am and have to give a sample so it poor guy Yeah.

Scott Benner 33:59
I think it's not that exciting. I need you over here oh my gosh. They need it so fresh sample. Alright, I'm just going to ask because I I'll again I'll wonder surgery for heartburn was his what is

Karen 34:13
really, really bad heartburn. Like all the time and taking the highest doses of just over the counter meds and so yeah, it's called it's called like I'm not gonna remember the name of partial nip nip in fund optic what funded the location or something and I don't remember but anyway, it's a surgery I think they take part of your like esophagus and like or your stomach and tie it up around your esophagus to shrinkable to tighten, because your esophagus gets like opened up or loosen. So to tighten it so

Scott Benner 34:56
yeah, that's insane. I mean, honestly, the entire conversation. I mean, despite your outcome, you know, initially with your first try, all of this is just crazy. As far as medical technology goes, I mean, honestly, it's it's it's absolutely unreal. And you said, you said earlier, you're gonna try again. You're, you're up for it.

Karen 35:19
Yeah, I mean, not today. But I definitely I mean, we definitely, we want kids and like, you know, I'm not getting younger. And so yeah, we'll try it takes a couple of months for all of the like, hormones from pregnancy to normalize and for your uterus to shrink back down to close to its normal size. And so we have to wait, we have to wait a few months. But But yeah, I mean, we'll try again. And hopefully, I mean, there's no reason to believe that our remaining frozen embryos, you know, have any problems. We were just, I mean, we've thoroughly investigated all of this. And it turns out, like, I think it was just really bad luck. And we just fell into that small percentage who got a false positive,

Scott Benner 36:10
right? I'm gonna ask you about the diabetes stuff in just a second. But first, I just was wondering if you could maybe articulate a little bit. I'm assuming you've been on like a roller coaster of emotions, right? Like, you got married, you waited? Listen, you did. But you did what I tell my kids to do all the time. Like you waited until you were a real person and you understood yourself and you understood other people, and you found a really good match. You get married five seconds later, you have type one diabetes, you realize in short order, you're having trouble conceiving. I mean, are you okay? Like, it feels like, I'm saying, like, that's a lot for a person to go through in a short amount of time. And I'm wondering what the impact has been for you?

Karen 37:00
Yeah, I think, I think I am okay. I agree. It's been a lot. I mean, and I was totally healthy, you know, for the first 35 years of my life, and then all of a sudden diabetes, and then infertility and then losing this baby. It is a lot. I think that. So in, I've had like, a really kick ass life. You know, up until these recent problems, my life is still great, but I had a really great life. My mom died when I was 12 with cancer. And that was awful, of course. And that was like the one big tragedy of my life. And otherwise, I've had a really, really great life to the point where I almost felt like, I'm I did feel like, I feel like I'm due for something bad to happen, because everything's just been so great for many years now. And, and then, yeah, kind of got hit with these things. And, but I think to answer your question, I mean, I think I'm doing okay, I think mostly because I'm lucky to have resources, you know, like, I have great health insurance, and I have excellent doctors and I have excellent support system with friends and family. And, you know, I'm, like, proactive to try to make sure that I stay okay. So, you know, like, when the baby died, and now participating in a support group, you know, of other mothers who have had similar situations, and I've, like, when I got died, but diagnosis, diabetes, I got a therapist, just to like, I was okay, but just to like, be proactive, because I didn't want to have that diagnosis result, you know, anything. You know, bad. So, I think that I've been, okay, coping because of, yeah, those positive things in my life, like a good support system. And in good doctors, yes,

Scott Benner 39:08
solid insurance, even just, you know, things that you can count on, whether they're people or institutions. Those things can leave you not feeling completely alone when stuff like this happens.

Karen 39:21
Yeah. And having lived in Rwanda the year before all this, and we hasn't, and I definitely think a lot like, if we lived in Rwanda, like if we, you know, grew up in Rwanda, we wouldn't have you know, how things would be different, wouldn't have all of these resources and it would be totally different. So I'm grateful to have all that

Scott Benner 39:44
Yeah, that should that trip must have packed out a lifetime's worth of perspective into you. You know, yeah, just seeing just seeing people live differently in a different part of the of the world. Okay, so, I mean, what part do you want to go through? Like, you know, how did management change at conception? Or through IVF? Where do you want to start?

Karen 40:08
Um, I guess let's start with IVF. Although I have to admit, now, I don't remember many details, I should have taken notes. But what I do remember is, so when you do IVF, you take daily, multiple daily shots, where you're giving yourself hormones to make you grow a lot of eggs, and those drugs make you those hormones, cause insulin resistance. So and you do that for about two weeks, and like 10 days to two weeks before they do the egg retrieval. And so as that, that two weeks happens, you become more resistant to insulin. So I definitely had to, had to like up my amount and then you know, after they retrieve the eggs, then be prepared for that to drop back down. So that's what I remember during that part. And I remember when I had the surgeries for the egg retrievals I yeah, like I asked that you used to intercede theologist to watch my phone the whole time. And but it was no problem, my blood sugar stayed stable through that, and then getting pregnant. So So I was pregnant for 20 weeks, and it's definitely you know, roller coaster, your needs are changing, could be weekly. So I think it's just a lot of monitoring and adjusting. I felt like usually, you know, when you're not pregnant, my endocrinologist want me to kind of see a trend for maybe several days or a week before I would make an adjustment because of it when you're pregnant. My new endo says you know, if you see a trend for two days, then make an adjustment because things just changed so fast. But, and then something interesting I learned when you're pregnant during kind of an earlier part of your pregnancy, like toward the end of the first trimester. You need less insulin and and I read in the there's a book pregnancy type one diabetes, and they said that your body starts making its own insulin again a little bit, which doesn't make any sense to me, because how could these beta cells die and then come back alive? So I don't know I haven't. I haven't fact checked this. But I mean, my endocrinologist also says, said that, yeah, you your body starts making a little bit of insulin on its own, which is kind of it's very cool on one hand, but it's also just messes with your your management because you're giving insulin and then your body's giving some to then it's

Scott Benner 43:00
a honeymoon almost where you just you can't be sure if your needs are really what they are. Did you find it actually happened that way?

Karen 43:08
Well, I didn't find it to be so so clear as maybe I had read about it being for other people, but my insulin needs definitely went down. I didn't notice it was like a specific sharp decline. I don't know but I my insulin needs definitely went went down. And then I know you know, as your pregnancy continues, like in the second half of pregnancy, you'd become insulin resistant and need much more. I hadn't gotten to that point yet. For me, my insulin needs had gone mostly just down although I should be more specific. My Basal needs went down. My Bolus needs went up and I'm a little odd with my I require very little basil and then a lot of Bolus so I was only I only have like about six units of basil a day but then have like a right now like a one to six insulin to carb ratio. Wow. So yeah, that's why my new endo was like maybe your a lot of maybe we should test for that.

Scott Benner 44:16
You're getting like point two five an hour through your pump.

Karen 44:19
Yeah, I mean, I have a couple different settings throughout the day. But yeah, from like, point two to point three. Yeah, roughly point two five. Exactly.

Scott Benner 44:28
Do you be willing to share your weight with me? Just yeah, yeah.

Karen 44:31
Of course that's fluctuated a lot in the last couple months of pregnancy, but yesterday, I was 129 129

Scott Benner 44:39
Wow. My daughter weighs up about what you weigh. And her Basal knees are like 1.1 an hour. And yeah, and her hurt. Her carb ratio is like one to four and a half. So that's really something Wow, no kidding. Um, So when you when you introduce the, I mean, it seems clear when you introduce hormones no matter what, whether it was during IVF, or your body doing it during the baby growing needs, fluctuated. How far do they fluctuate with the IVF? Like, what did they go from to when you started doing the injections?

Karen 45:22
Um, I wish I now I don't remember, but my best guess would be I mean, not a huge maybe like 15% more. Okay, and insulin and I needed

Scott Benner 45:37
basil went up about that much. Yeah. Okay. And then did you your current ratio change at all?

Karen 45:44
Um, I don't remember for the IVF. It did for pregnancy. So I was at a one, one to eight. And then I went to one to seven. And then I went to one to six.

Scott Benner 45:57
Did you find the IVF to be personally tumultuous? Like people talk about, like, with your relationship? Did you find yourself feeling like all over the place when they were introducing hormones and things like that?

Karen 46:11
Um, I felt like it wasn't as bad for me, as I had read about. I remember when we are trying to decide whether to do it. I read one study that showed that women who do IVF have just as much like stress and anxiety as women, cancer patients. And I was like, Whoa, that's heavy. But um, no, it wasn't, it wasn't as bad for me. Maybe that's because that was when after COVID started, so I was working from home, maybe it was less stressful having you have to go in every other day for ultrasounds and blood work. And that's, you know, just demanding just on a schedule. You know, if you're working, and you have to leave work every other day to go to the doctor, and you have to give shots multiple times a day. And, and so maybe it was a little easier that I was at home, my husband was also at home, and he was giving me the shots, which helped. And also I have diabetes. So I've given myself shots before. And so that wasn't you know, as big of a shock, as I think it is for a lot of people. And then as far as just emotionally. I did. Like, after about a week of being on the hormones. I did feel more emotional. Yeah. But it was kind of short lived. And it wasn't. It wasn't anything super dramatic. For me. I know it is for a lot of other people. But I actually thought that that part of it wasn't as bad as I was imagining. It could be,

Scott Benner 47:46
you know, or you weren't kidding, your life was going well, I just realized you were like in your local newspaper and things like that. And yeah, things were, well, listen, I listen, I can tell you something. I've never gone through what you've gone through. But I have been alive about 15 years longer than you. And it comes back around again, is like the best thing I can say is it just like no matter where you are, it doesn't last, the great stuff doesn't last and the bad stuff doesn't last, it's all sort of about moving forward. And you seem to have that attitude, like I've been trying to figure out for the last 40 minutes. Like your personality. And, and I'm getting I think I'm starting to get to it. Like at first I was confused because I didn't realize that you were you were here and all this had happened. And you were probably nervous and upset while you were talking. But you've loosened up over the last 10 minutes since you told me about the baby. And, and but you're very matter of fact, like you must work well in journalism is what I keep thinking. If that makes sense.

Karen 48:54
Yeah, I think you're right. I mean, I, I would describe myself as being very, like, open and direct and very, like, logical and, yeah, analytical and stuff.

Scott Benner 49:07
So is that the part of you that you're using to move forward with all this? Like, I mean, trying again, seems like a big step. But to you, it just seems like an obvious step. Because you went through all this. You still have the eggs, and you still want to have a baby. Right?

Karen 49:20
Yeah, I mean, to me, it seems like Yes. Obvious. You're right. I mean, I just, I mean, this is this has been, you know, devastating, but I don't, I don't see how waiting would you know longer than what is medically advised. I don't see a waiting and longer would be helpful. If anything, it would just be harmful because I'd be older and you know, the older you are, the more risks you have with pregnancy. And so, and I mean, ideally we'd like to have two kids. We are completely realistic and under understand with two frozen eggs and They're 60 60% chance of working, but we might not get two kids, we might get one kid. But, you know, I definitely want to want to keep trying. And I think I'm generally an optimistic person. So

Scott Benner 50:15
you seem like, Listen, if you want to I have a kid about to go to college, if you want the whole experience, I could I ship, you could pay for the school and do all the stuff. And sure, it'd be wonderful. I know, I'm looking forward to it. And she has diabetes. So you guys could talk forever, you could share insulin pump supplies, it would really be terrific. Let me get her over there. I'm gonna get her on a train right now. But But seriously, though, I just think it's kind of crazy. Like, not crazy. It's nice, because I never heard you say, you know, when we thought about not doing it again, or we're going to give up or we're not going to try like that was. I think that's brave. And it sounds like it's rooted in a lot of strength, in my opinion. So thank you. Yeah, but you've also now you're, you know, as you're relaying your story, you've been through some things. I mean, living through your mother's passing at a young age is, you know, I mean, it's obviously impactful. But it also builds, you know, what I mean? Like some people go through hard stuff, and you come out the other side a little better prepared to deal with the next difficult thing. That's really a it's kind of wonderful. In a sad, the sad but but very human way. I am enjoying your story. So how long do you have to wait? Is it the, I mean, this just would you say this just happened two weeks ago?

Karen 51:37
Yeah, less than two weeks ago. Um, well, the IVF, doctors said that they recommend waiting six months before trying again, but they said, you know, that's not a strict rule. And we can just revisit that conversation with the doctor and a few months, they said, it definitely takes a few months for, like I said, the hormones to stabilize and the uterus to shrink. So I mean, definitely two or three months, and then after that, we can have another conversation about it and see, if everybody would feel comfortable doing it. You know, sooner than six months, I imagine we'll do an ultrasound and see if my uterus is the right size. And so we'll just see how it goes. But hopefully, you know, in about six months or so,

Scott Benner 52:24
how did this impact your husband? The the loss of the baby, did he handle it differently than you did?

Karen 52:30
Um, he handled, I would say we've handled it. Similarly, which I'm thankful for, because I know that, that pregnancy loss can definitely, you know, impact couples in a negative way. So far, I feel like we've really been a team. He took, he took a week off work, which I was really grateful for, because, you know, I think a lot of men especially feel like, pressured to keep going. And, but all of the people we talked to who had been had had similar experiences, gave the advice of, you know, making sure that we took time and a lot of people said, I wish I would have taken more time or men that didn't take time said they wish they would have and so I'm glad that he did and it was really nice that we had then a week together at home to be able to like properly grieve, you know, we had our we had wanted to have the sex be a surprise, but after we found out that we were losing the baby, we looked and he was a boy and we're able to like get him cremated and just make like, read some books about loss and do things together that I think helped us both heal. So yeah, I mean, I know grief hits everybody differently, but actually feel like we've been pretty similar. One difference is that I was more like sitting on the couch that week. And he he he copes more by staying a little busier just around the house, like cleaning or doing home projects is more helpful to him than just sitting there. So that was one difference. But like overall, we've been pretty similar.

Scott Benner 54:33
Will you were you working through this? Or

Karen 54:38
um, I mean, I was I when you know, we found out that we are going to lose the baby I am you know, I asked for a week but but it's a little messy because I I am teaching a class right now. And frankly, it would be a lot more stressful and more work. For me, it will try to like hand over my class and prepare content for someone else to manage my class than for me to just do it. So I've continued teaching my class and then I'm the I have administrative responsibilities. And so those I've mostly handed off and then I do research and that I've just had to put on pause. So it's been a bit of a mix. Would you

Scott Benner 55:23
mind if we took a huge U turn here in our conversation? Sure. Okay. Is your opinion, obviously, are we are we screwed the way we're getting our media now, like that, that, that there's not some like grizzled person who's not really making a ton of money, who nobody knows who they are, who spends four months writing an article that we read, and it's well researched? And, and, I mean, we're in a world now where everybody like, right, like, your, your money comes from clicks. So your banner headlines are more important. It almost doesn't matter sometimes what the article says. It just seems like it's, I don't know, I just, I'm old enough to remember being delivered, but felt like the news. And now I feel like I'm being delivered. Like, I don't know, the report from my team. You know what I mean? And I was wondering what you thought about that, and if young people coming up in journalism, aren't even aware of where it used to be.

Karen 56:30
I mean, I think you're not alone in feeling the way that you feel about it. In journalism, I have a lot of problems right now. You know, just going back to losing its business, its advertising business model when the internet really came about, and then, you know, a major lack in public trust. And, you know, this whole fake news and extreme partisanship, and it's, it's no joke, these are serious problems. And it's, it's a hard time. But I am asked to talk optimistic, and there is, there's really good journalism out there. I think the bad thing is, it's harder to find, and you have to be intentional about finding it. And I think, you know, big issue is, is media literacy. So I think we should do a better job about teaching people, you know, how to analyze and interpret news stories, and where to look for good news stories. So I actually do research on more socially responsible ways to report the news. So there are some there are some forms of news reporting called like constructive journalism, or solutions journalism, where we, it's still, you know, rigorous, like black based reporting, but where you kind of don't just focus on the problem, you take an extra step to look at, well, who is doing what about this problem? Who, how are people responding to this problem, and then focusing on that, you know, to to make people feel more empowered, and to have better effects on news audiences, because a lot of the news that people read today just makes them feel hopeless and depressed. And so I think there is really good journalism out there. But yeah, it's harder. You have to be kind of have to know where to look. And you have to be smart thinker. To figure it out. Hard,

Scott Benner 58:42
it also seems like the people who still do it with any kind of, you know, ion quality, have had to go to subscription models and work for themselves, basically. And then that puts me in a situation as a consumer to say, Look, I can't give, I can't give every journalist in the world $15 A week that I need to hear from like, some conglomeration needs to come together, identify those people pull them together in one place, like I can give that person money. You don't I mean, I can get and they can pay them. And I also see why those journalists might not want to do that. Because with a smaller audience, I think they're making more money than they ever have really working within institutions. So they might be doing great work, but I don't know how to, like, I don't know how to collate it, like, how do I find it and put it all in one place? So I can see like, I can't spend my whole day. You know what I mean? Like, I think that ends up being the bigger issue is that there is something there was something special about knowing that, like, you're going to crack open the New York Times, and it's going to it's going to be the New York Times, and now, it may not be and maybe no newspaper is really and then you think well, okay, well a TV channel could do it. But then they start falling into camps of like, well, we'll lean one way or the other and then you know, it. Eventually it just becomes about sir Giving you news that you want not the news that exists. And I don't know, it just seems like when I talk to younger people about it, they have no concept for it because they've they've kind of grown up in this place where their phone has fed them exactly what they're interested in. And they don't they don't even think about looking at things that they disagree with. It seems to me Yeah.

Karen 1:00:21
And they're definitely not willing to pay for news, which I understand. I mean, why would we expect people to pay when they can get news for free? And also when they read the news, and it makes them feel terrible? Like, why would we expect people to want to pay for that product? And so it is hard, but I know, you know, there's a lot of people experimenting with a lot of different business models in journalism. And that's still, you know, still something that needs to be worked out is how, how we can do it effectively and still make enough money to do it effectively.

Scott Benner 1:00:54
Yeah, it's funny, as I'm saying this, I'm realizing, I mean, honestly, that's my business model those who like I have a, you know, I make a living, feeding diabetes content to people who are interested in it, but it just seems, it seems different to me, because I'm not, it's not like there's some other perspective on diabetes. That's the way the other side thinks about it. And I'm not I don't know.

Karen 1:01:20
I mean, there's definitely like, what you what you have that's different is basically advocating tighter management. I mean, I think, I think there is kind of an other side, like endocrinologist to go by basic guidelines of, you know, keep your blood sugar between 70 and one ad, where, if you or I see one ad, we, you know, think of that as being high and aim for a better target than what a lot of the kind of guidelines recommend. So I think in one way, you do you do have a unique?

Scott Benner 1:01:58
Well, I have to say, that would be a hell of a podcast. I don't know how you keep that going very long. Just wherever your blood sugar lands is fine. Don't worry about it. You'll be okay. Are you want? Let's, let's dance in the rain. Yeah, I don't know where you'd go with that. But I take your point. I mean, I guess I have picked a perspective that probably prior to me talking about it, there were only a few people who, who would jump out in public and say, I think you should be working harder to keep your blood sugar lower and stable. Most of those people, I mean, even people who think that often or are scared to say it out loud. It just seemed obvious to me when I started doing it. Like, like, why would why how? I always thought like, how would it be that I know how to do this. And I wouldn't share it with other people. That just seems ridiculous. But

Karen 1:02:47
anyway, thing that always seemed interesting to me is, you know, when you're pregnant, they have stricter standards for your blood sugar and want you to stay between 65 and 140, at least 70% of the time. And the goal is to have a resting blood sugar between 65 and 95. And the goal is to not be over 122 hours after your meals. That last one was always hard for me. But um, but I always thought it's interesting. Like, why is this the standard only when we're pregnant? We should care and invest in our health and our bodies, not just when we're also caring for the baby inside of us, but for ourselves, too, you know?

Scott Benner 1:03:29
Yeah, Jenny. And I laugh about that sometimes that I mean, not laugh, but we're like, how is it that we say the same thing as a why is it more important that you're healthy when you're pregnant? And the rest of the time? So yeah, whatever. But But I think if you dig down deep into it, the part of me believes that. I mean, you said it earlier, like there's not a lot of like a lot of information for people, most people aren't going to have that information. So you're gonna, you'd be immediately setting them up for failure, which could have them backslide, or just tumble out of concern at all, and just let it go. Like maybe if you give them something that's reasonable for most people to achieve. Maybe the idea is, then most people can feel like they're being successful. And we'll keep more people in a healthier range. Instead of fewer people in a tighter range, and everybody else just gets thrown away. I just happen to believe that that doesn't have to be the case. I think everyone can hear the information and then achieve their own level of success. Like we don't have to. We don't have to paint with such a wide brush. You know what I mean? There's no reason why you can't feed the information to people in a way where you take one thing out of it and your blood sugar doesn't go over 120 and another person takes something else out of it and their blood sugar doesn't go over 140 and etc. And why can't everybody have their own level of success instead of you know, saying that this is success and this is failure and you either fall into it or you don't? I don't know.

Karen 1:04:55
That's what I think there needs to be classes like when it when someone's diagnosed, they're automatically be enrolled in these classes, because you need to be given all that information. And it is it's too much to be given in one appointment when you're diagnosed, but there's so much to learn. I mean, I've been learning for two and a half years, and I feel like, you know, there's still so much to learn. And now I just can't believe that things I didn't know, when I was diagnosed. Right, you know, just little things like, like, fiber, you know, like the impact of the different types of things you eat, and how that, how that should cause you to adjust how you're giving me insulin, like stuff like that is so important. And, you know, like, when, when I got diagnosed, the what they told me was, when your food is hot, take your shot. So like, you know, take your insulin right at the time you start and you start eating. And, you know, I know, some people are told to always Pre-Bolus, like 15 minutes before they eat. But, I mean, it just massively depends on what you're eating. And I do eat foods that are have a lot of that are more slowly digesting. And so I often, you know, would, it would not be good for me to Pre-Bolus. And so, and during pregnancy, your digestion slows. And so I find needed to extend a lot more. And, like that kind of stuff is really crucial to know, and you just, you don't get that when you're first diagnosed.

Scott Benner 1:06:29
Certainly don't be that's I listen, I bang that drum as loud as I can. And I do think this format is as successful, as I've seen so far delivering that information, because like you said, there is so much you can't get all at once. So it's nice to just sort of pop in once in a while, listen, absorb something, go put it into practice, come back at something else. I do think that's I mean, the way people learn is, you know, of paramount importance when you're trying to set something like this up. So I don't know, I know, if you put me in a class, I would leave with nothing. I just know how my brain works. Anyway. Karen, is there anything we haven't talked about that you wish we would have?

Karen 1:07:14
Um, well, I hope we didn't just get too wrapped up in, in my story and didn't talk about diabetes manager enough.

Scott Benner 1:07:27
Here's what I got from that. More homework, more hormones, more insulin, right, quick, quick changes, nothing, you can't be waiting 234 or five days to make a decision you saw you saw needs increase, and you had to increase with them quickly. Those needs also could have gone away just as quickly, especially with the IVF shots, right? Like it was there and then it wasn't.

Karen 1:07:50
And with losing the baby, that's something you talked about. But as soon as the placenta is out of you, you can expect your insulin needs to drop, like up to 20%. And I saw that happen.

Scott Benner 1:08:04
Well, I'll tell people here too, that there is a pregnancy episode inside of the diabetes Pro Tip series. That's me and Jenny Smith talking about all this stuff. And I also have a series called, oh my gosh, what's it called? Am I gonna forget? It might be she's having a baby, where we we followed the same person talk to her at the end of her first trimester, second, third, and then a few months postpartum and had four different conversations along the way. Which I hear from other women has been helpful for them. I am me too. Yeah. Was it? Oh, I'm glad I am. I don't want to say I'm sorry. But I am. I am. I don't know you well enough to say this. I don't think but I am. So sorry for everything you've gone through. I'm grateful that you talked about it here today. I, I listened. Let's not make any promises. But if you want to come back on like a year from now, and tell me how it's going. I'd love to hear back from you again.

Karen 1:09:07
Yeah, I love that. Hopefully, it'll be great to be back on with more positive news, for sure. Certainly would

Scott Benner 1:09:15
be. Yeah, I'd be up for that. So I'm not saying keep me in the loop or you don't have to send me like a, like an announcement or anything like that. But, but an email would be wonderful. And then we could get something together afterwards. Okay, thank you very much for doing this. I really do appreciate it. Would you hold on one second for having

Karen 1:09:33
me. Oh, my pleasure.

Scott Benner 1:09:41
Well, first, I really want to thank Karen for coming on the show and persisting despite her situation. I also want to thank Ian pen from Medtronic diabetes and remind you to go to in pen today.com to learn more and get started. Don't forget to go to touched by Type one.org and find them on Facebook and Instagram. And of course to get your free benefits check from us med you can call 888-721-1514 or go to us med.com forward slash Juicebox.

Podcast if you go to juicebox podcast.com Go to the top of the page and click on diabetes pro tip. Actually, let me tell you about the whole top of the page episode list. diabetes pro tip the Omni pod five Pro Tip series a list of best endocrinologist that juicebox Doc's dot com there is a link to the free private Facebook group and a one cm blood glucose calculator. The blog, the signs of type one diabetes, a merch store, hardens diagnosis story and more at all the top of the page just click on it takes you right to it. You can also scroll down a little bit and find links for Pandora, Android, iPhone, Spotify, Amazon Music places where you can click right on the link and open up your app. And you can subscribe to the podcast and listen. There's lists of sponsors on this page. When I say like click on the links at juicebox podcast.com. It's there. And also a few of the series within the podcast you'll find right on the face of juicebox podcast.com. But back to the top of the page where you click on diabetes protip.com takes you to a sub page where I've put players for all of the almost all of them getting to it all let's just say all of the all of the series within the podcast 44 episodes of defining diabetes. There's a player right on the page like I'm on another computer right now watch this I'll just click on something. In this episode of defining diabetes, Jenny Smith and I are going to define honeymooning. See that is that odd and unpredictable time I will pause Hold on a second. I got it sorry. So the defining diabetes series there all 44 episodes in an online player, scroll down a little bit bold beginning series and then the variable series diabetes pro tip links to the sponsors again, after dark series mental wellness episodes asks gotten Jenny 18 episodes of that and running algorithm pumping interested in Omnipod five control IQ or loop we have episodes about that. I think we even have one about that one from Medtronic. Defining thyroid series right a lot of you have thyroid issues. Here is thyroid disease explained. It's all at juicebox podcast.com.

#748 Asher

Rebecca's son has type 1 diabetes and autism.

+ Click for EPISODE TRANSCRIPT

#747 Bold Beginnings: Flexibility

+ Click for EPISODE TRANSCRIPT

Test your knowledge of episode 747

1. Why is it important to understand the different types of insulin?

2. What is the importance of regular blood sugar monitoring?

3. How should insulin doses be adjusted?

4. What role does diet and nutrition play in diabetes management?

5. How does physical activity impact blood sugar levels?

6. How should diabetes be managed during illness and stress?

7. What are the benefits of using diabetes technology, such as insulin pumps and CGMs?

8. Why is building a support network important for diabetes management?

#746 In Vitro, Pregnancy and Loss

Karen has type 1 diabetes and is here to talk about IVF, pregnancy and miscarriage.

+ Click for EPISODE TRANSCRIPT