#1031 Mother of Two TD1s

October 2, 2023Scott Benner

Nichole is the mother of two T1ds and there are a number of autoimmune issues in her family.

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Scott Benner 0:00
Hello friends, and welcome to episode 1031 of the Juicebox Podcast.

Today on the podcast I'll be speaking with Nicole. She is the mother of two children with type one diabetes and a husband with some autoimmune issues. Her kids have type one and celiac, her husband has celiac. Her husband also has psoriatic arthritis and vitiligo and her son has Down syndrome so we have plenty to talk about. While you're listening today. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you'd like to start with ag one you get five free trout you can get online just enunciate a little bit. If you'd like to start with ag one, you can get five free travel packs and a year supply of vitamin D with my link, drink ag one.com forward slash juice box and you can get 40% off of your entire order at cosy earth.com When you use the offer code juice box at checkout. If you're looking for a community online for diabetes, I do hope you check out Juicebox Podcast type one diabetes, a private Facebook group with 42,000 members.

This episode of The Juicebox Podcast is sponsored by touched by type one touched by type one.org. And they're on Facebook and Instagram. These are the three places I want you to go Facebook and Instagram give them a follow touched by type on.org. Look at what's going on. I believe the dancing for diabetes Show is Back on the on the calendar and coming up quickly. I'll tell you more about that in the ad. But for now touched by type one dot work. The podcast is sponsored today by better help. Better help is the world's largest therapy service and is 100% online. With better help you can tap into a network of over 25,000 licensed and experienced therapists who can help you with a wide range of issues. betterhelp.com forward slash juicebox to get started, you just answer a few questions about your needs and preferences in therapy. That way BetterHelp can match you with the right therapist from their network. And when you use my link, you'll save 10% On your first month of therapy betterhelp.com forward slash juicebox

Nicole 2:34
I'm Nicole and I have two kids with type one diabetes. Wow.

Scott Benner 2:40
I call that that's not something I hear every day. So how old are those kids?

Nicole 2:49
My son is 12 and my daughter is 10

Scott Benner 2:54
son 12. Daughter 10 son diagnosed when

Nicole 2:59
2920 21 How about your daughter? 2019.

Scott Benner 3:06
So she was she was first and she was younger? She was like six six. Okay.

Nicole 3:13
And so I I picked today's date because it's kind of right in between there diversities. Oh, she was diagnosed February 11 and 2019. And he was diagnosed February 6 in 2021.

Scott Benner 3:27
It's nice to keep everything in the same month. It's good idea for for purposes of you know, when the next year comes around. You don't have to be sad twice. You can just you just had Are you sad when they when the when the anniversary comes around?

Nicole 3:42
I don't know if I'm sad.

Scott Benner 3:45
Are you even aware? I'm not even aware of it?

Nicole 3:47
Oh, yeah, I'm aware for sure. Because so my birthday is coming up and like they're diagnosed right on my birthday. So it's like,

Scott Benner 3:57
Oh, your family only does things in February. Yeah. It's nice to know

Nicole 4:02
how the bad stuff comes around my birthday. I really feel like times.

Scott Benner 4:08
Cool. You think this is a massive geopolitical situation where everyone's coming after you is a geopolitical you don't think family health? You don't think other governments are involved or anything like that? No, I don't good. I just wanted to rule out that you weren't like, you know, crazy. Okay. No.

Nicole 4:30
Well, maybe I don't know. But it started. So I originally contacted you because of celiac disease, right? They both also have celiac disease. Yeah, why not? That? Well, those diagnoses actually came first for both of them. So for both of them, right? That they were both diagnosed in early 2018. And my daughter you know her endoscopy was confirmed on my birthday 2018. And then almost exactly one year later, she was diagnosed with celiac. So that's why I kind of feel like there's a little black cloud that follows me around on my birthday. Maybe larger, my son got COVID on my birthday. So

Scott Benner 5:17
that's not true. Is that really? That's true? That's totally true. My call today is your birthday. That should be your theme song. Oh, my gosh, are you? Boy, we have no reason to dig into this. So we're not going to but I wonder if you're not like, I don't. I don't even mean subconsciously. But I wonder if you're not like why are you noticing things in February?

Nicole 5:40
Looking for sicknesses in February, there's

Scott Benner 5:44
like a slow month for you. Are you like? Do you live on the side of a mountain and you're snowed in and they have more time to think about things? There's anything like that going on?

Nicole 5:53
No, no, no, no, she lived on the side of a mountain. But I do not. Do you really? No. No. Yes, I do. I'd love to live in a mountain. Yeah.

Scott Benner 6:01
Tell me why you think that'd be great.

Nicole 6:03
I don't know what. The mountains are great. Oh,

Scott Benner 6:07
yeah, I thought you're gonna know

Nicole 6:08
I'm not that I want to be like super isolated. No, no, no. I thought you were

Scott Benner 6:12
gonna say because my manifesto would be easier to write if people weren't bothering me all the time. I just want to double check on the crazy thing.

Nicole 6:20
This is gonna go really in direction, Scott. Thanks. So I have I have been to Lincoln, Montana. Do you know where Lincoln Montana is?

Scott Benner 6:29
I mean, it's the

Nicole 6:31
Unabomber. Yes.

Scott Benner 6:35
Did you go there to leave flowers or anything like that? No. Well, I think we're fine, then. Montana is a real place then.

Nicole 6:46
It is beautiful. It's one of my favorite places ever.

Scott Benner 6:49
I thought it's just where they make like TV shows where we look at it and go, I wish I lived somewhere nicer like that.

Nicole 6:54
Like Yellowstone.

Scott Benner 6:56
Yeah, exactly. Okay, so the celiac comes? Wow, your daughter's five? At Is there any? Like any of this happening in your family so that it's not like completely out of left field for you? Or is this the first time you ever hearing about autoimmune?

Nicole 7:14
So we have sort of an interesting diagnosis story. It started with my son actually, my son has Down syndrome. Okay. And people with Down Syndrome have a higher incidence of celiac disease. So his pediatrician screen Tim every year, you know, it is annual checkup for celiac. And he turns seven, and bingo, it's, you know, the antibodies are showing up. So, once one person in your family is diagnosed, you're all supposed to get tested. So then we were all tested after that. And it turns out, my daughter had it and my husband had it. So all three of them have it. But we would have never known I don't think had you know, my son not been checked regularly. My daughter had it for a long time based on they can they look at the damage to your small intestines to kind of determine how severe or how long you've had it. And hers was really hurt intestines were really damaged. She had had it a while. And she was always small for her age. And I always questioned that and, you know, was just told oh, it's fine. You know, she's still growing. She's just tiny. She's just, you know, I'm smaller too. And they're like, you know, she's just taking after you. And I'm like, but I wasn't that small when I was her age, you know? But anyway, it turns out she was small because she wasn't getting the nutrients. She ate it because her intestines were so damaged.

Scott Benner 8:57
Is that kind of damage? repairable?

Nicole 9:01
Yes. Yep. Once you eliminate gluten, the intestines do heal.

Scott Benner 9:09
I want to jump around a little bit. So Down syndrome is that in a family thing? I don't know anything about it. Is that something that's

Nicole 9:17
just a random? That's a random? Yeah. And I was, you know, probably more likely. I had him when I was 37. So the chances do increase with maternal age.

Scott Benner 9:31
Do you know that when asked to pick a number between one and 100 most frequently people pick the number 37

Nicole 9:38
I did not know that. No. Interesting, has nothing

Scott Benner 9:41
to do with this. I was trying to I was trying to find a way to loop back around to the February thing and it's not there. I'm gonna let it go. Okay, so

Nicole 9:54
the report in February so

Scott Benner 9:56
no, wait, hold on. Hold on. Wait, let me March, April. matrons were they born in November?

Nicole 10:02
My son was born in November. Yeah.

Scott Benner 10:05
So you have you even July, so even have sex in February?

Nicole 10:12
Well, there's not much else to do some. Well, I live in Minnesota. So it's really cold and

Scott Benner 10:17
oh, yeah, no kidding. I'm sure your husband will be thrilled to hear that. You had sex with him? Because default, there was nothing else. He won't be surprised, you will be surprised. I will listen to basements clean. So I guess we might as well. Oh, my gosh. Can I ask a little bit about your son? Sure. Shocking. Did you know In utero, what what's what's it do to your life? Like?

Nicole 10:49
It was before, you know, some of the more reliable tests? You know, they talked about doing, you know, at that time to know for sure, it would have been an amniocentesis, which is sort of risky. And, you know, we did have trouble getting pregnant, or I did. So, ya know, it wasn't, you know, something that that I wanted to do. By the time they offer you that it's, you know, I seen, probably 10 ultrasounds, you know, we already you know, we know it was a boy and it wouldn't have changed anything.

Scott Benner 11:22
Yeah. When and so you'd but you don't know until he's physically in the world. Right?

Nicole 11:28
Correct. Yep.

Scott Benner 11:29
Can you I'm so sorry. Can you walk me through that a little bit? Like, what is? Is it shocking? Is it? Oh, yeah. Yeah. Like, I mean, like, how do you? How do you move forward from that?

Nicole 11:42
Slowly, I guess, we had some good support. We got him signed up right away for services through our school district. And, you know, right away, they went of his therapist, connected us with another family, with a child with Down syndrome. And we got involved with the Minnesota Down Syndrome Association right away, which was really, really helpful. Just read books. Yeah, we had some good support and

Scott Benner 12:17
information, support community. And patient,

Nicole 12:20
he was still he was a little baby. You know, he was a sweet, cute little baby. That's, you know, babies with Down syndrome are just babies.

Scott Benner 12:30
Yeah, no, I didn't even mean about him. I just meant about, I mean, your expectations, obviously shift, like drastically. And yeah, and I'm wondering how you pivot along with them? Yeah.

Nicole 12:41
I mean, it's been so long ago. You just do, you know, you're just my college adviser said, you know, provided some just really good practical advice. You. You play the cards, you're dealt, you know,

Scott Benner 12:57
and did these do you think that experience helped you? When the celiac came along? When the diabetes came along? Did it make those things? Not lovely? Yeah, not I wasn't gonna say easier. But I wonder if familiar, like, again, with the expectations shifting? Yeah, probably. You don't think about it like that, though. Hmm.

Nicole 13:17
I guess not. I, you know, I just like this is, this is our life, and we have to deal with it. And, you know, make the best of it. Don't try don't try to dwell on it and

Scott Benner 13:27
dissect it. Try to figure out what, yeah, see how you feel. If

Nicole 13:30
you go crazy if you do the what ifs? What ifs? What ifs?

Scott Benner 13:34
You know, no, no, I mean, that's, that's kind of what I'm trying to get at is that you seem very, like peaceful about it. And that some people, like I talked to some people, and they're just hair on fire. And I'm trying to figure out what the difference is. And I wonder if it isn't just wiring, if you're just not wired to, to handle this this way, versus a different way?

Nicole 13:57
Yeah, I don't know.

Scott Benner 13:58
Yeah. Okay. So what do people not understand about celiac?

Nicole 14:04
That, you know, there, there is lots of issues if, if you're non compliant, or for sorry, not, not diagnosed. My husband probably had it a long time to before he was diagnosed. And, you know, I remember when he said, Okay, so the GI doctor tells you, okay, the rest of you all need to go get tested. And so, but you have to go to your regular doctor to get tested and they didn't even want to test them. They're like, well, you're six feet tall, and you know, in super good shape. You don't have it, really.

Scott Benner 14:47
So that so this and he did it he did so this is prevailing through medicine, but the You look healthy. Yeah. Yeah. Gotcha. Yeah.

Nicole 14:58
So yeah, then he did have it. And then they started testing him for a bunch of other stuff. Because, you know, he had probably had it for a while and he had low iron, and then he had osteopenia, or he, he has osteopenia. I don't think you can correct that. So his bones, you know, were getting leached of calcium because he wasn't getting any new nutrients from his his body. So

Scott Benner 15:22
Wow. So he is he taking something to combat that? It's low bone density, right?

Nicole 15:28
Yes. Not right now. I don't know if he will have to in the future or not. I think. The hope is that it doesn't get worse now that he's, you know, gluten free.

Scott Benner 15:38
Yeah. Isn't that interesting? And he didn't know his whole life. Like, I mean, he knew something was

Nicole 15:44
he probably didn't have it his whole life. So you know, like any autoimmune stuff, you can pop up on him something. Yeah. triggers it.

Scott Benner 15:52
Yeah. What did you notice it? Like, were you like, every time we go out to a restaurant, he's in the bathroom?

Nicole 15:58
Something like that. In hindsight, yeah. Yeah. Hindsight, were

Scott Benner 16:02
you trying to be funny when you said hindsight, because your hindquarters or your? No, no, it wasn't?

Nicole 16:08
Yeah, we have a pizza, like a local pizza place that I always like to go to. And he would always kind of like, every time I go there, I don't feel good. And I'm gonna go. But yeah, you know, I'm sure they use like high gluten flour and their

Scott Benner 16:24
dough. And he goes into that place just didn't make, I will tell you that I'm just the simplest thing. I've talked about it on here all the time. Like, right, I've cut all kinds of oils out of my life. Like I just don't, I just don't use oil. And the other day, I got it into my head that I was gonna make Shrimp with like, some hot sauce on it. And I was gonna pan fry it and everything. And then it just hit me. I was like, Scott, go ahead and make fried shrimp instead. Like do it like a person. You know? They mean, like, do what other people do. And then I didn't feel good for three days after that. So fried shrimp. Yeah, yeah, I breaded fried it. Then I tossed it in some, you know, hot sauce, and they were so good. But it messed up like days of my life after that. Yeah, just and I did it in peanut oil. So not, you know. I mean, not canola or something like that. I tried my hardest. It didn't matter. Like my body doesn't like it when I eat oil. You know? So yeah,

Nicole 17:26
he has a lot of troubles, like 30% of celiacs. I think that's the number still have a lot of GI issues, even when they're gluten free. And that's my husband.

Scott Benner 17:37
He's one of those people.

Nicole 17:38
He just still doesn't feel good often and has to really be careful. Like, he doesn't eat a lot of really rich foods, you know, like anything with a cream sauce or anything like that, which is

Scott Benner 17:49
not good for him. Yeah. And that's something. Okay. Give me right I hand you the magic wand Nicole, and I put in front of you down? Is it? What's the proper way for me to talk about is it Down syndrome? Do I just say Down syndrome? Do I say downs? What do I do?

Nicole 18:08
It's Down syndrome is named after a guy. Yeah.

Scott Benner 18:10
Okay, so Down syndrome. So I put that up there. I put celiac up there. I put type one up there and you're allowed to zap one of them? I think I know the answer. But which one is at first? type one, type one. C? I never know the answer.

Nicole 18:22
You were maybe gonna guess Down syndrome. And but that's really the easiest of all the things we deal with. But some of the health issues I suppose are related to that. But then you know, my daughter was the first one to get type one. So she does not have Down syndrome.

Scott Benner 18:39
Right. How did they manage? How are they going along with their diabetes? Do they use shots? Pumps CGM? No CGM is what did they do?

Nicole 18:49
They're both on Dexcom. With the tandem T slums.

Scott Benner 18:53
Are they using really well? Are they using control IQ? Yeah, okay. When did

Nicole 18:59
five agencies in the mid fives. Wow. Congratulations.

Scott Benner 19:02
Is that made more difficult because of the celiac? Like it aren't a lot of gluten free foods prepackaged or how do you get around that issue?

Nicole 19:14
They Well, we eat like just natural whole foods. Okay. We don't eat a lot of processed foods for sure. But yeah, you know, the processed gluten free foods are you know, really high can be really high glycemic loads. Well, we found breads that aren't too bad. But they only really process things that we eat would be like pasta, and the bread

Scott Benner 19:43
is in bread funny. Like I can go forever and ever without bread and I don't care about it. And then when there are certain things like if you're going to have a bowl of spaghetti you think oh, I should have some bread with this. Or like you don't I mean, like there's it's almost like drinking wine where you're like, well if I'm going to eat this I'm definitely gonna have wine with but like it just it feels like bread pairs with certain things. And then there are times I just don't even like, I don't have it for myself. Like I never have it in the house for myself. But there are times where it's just like amazing. I don't know, I don't know how to do you miss it? Like, do you eat? Like, it just occurred to me you're the only one in the house doesn't have anything. Right? Right? Yep, you eat along with all of them to all these people who are ruining your life and won't let you go to that pizza place.

Nicole 20:30
Can't eat gluten and my birthdays are always messed up. Yeah.

Scott Benner 20:35
Because like, I just want to go to that pizza joint for my birthday. And none of you are gonna help me with this. But But do you eat along with everybody else touched by type one has a wide array of resources and programs for people living with type one diabetes. When you visit touched by type one.org Go up to the top of the page where it says programs there you're gonna see all of the terrific things that touched by type one is doing and I mean, it's a lot type one, it's school, the D box program, golfing for diabetes, dancing for diabetes, which is a terrific program. You just click on that to check that out. Both for a cause their awareness campaigns and the annual conference that I've spoken at a number of years in a row. It's just amazing, just like touched by type one touched by type one.org or find them on Facebook and Instagram. links in the show notes links at juicebox podcast.com. To touch by type one and the other great sponsors that are supporting the remastering of the diabetes Pro Tip series touched by type one.org.

Nicole 21:41
I do Yep. For the first couple of years. I even ate the gluten free bread we didn't have like any gluten in our house. After you know after a while I asked my kids I'm like in my husband is it okay if I just like bring a regular loaf of bread in the house and get regular buns when we have hamburgers for myself because the gluten free like the gluten free pasta is just fine. I have no issue with it. But the gluten free bread is not

Scott Benner 22:11
not what you're looking for. So this is if there's a safe in the kitchen and inside of this hermetically sealed safe there's bread for you. It glows like this the briefcase in Pulp Fiction when you open it.

Nicole 22:23
I do have a breadbox that I keep it separate

Scott Benner 22:28
because some people are smoking on their back porch so their kids don't know they're getting high after they send their kids to dinner. You're just like, I just would like a slice of bread every once in a while. Please.

Nicole 22:38
I just want a sandwich with good bread. Yeah.

Scott Benner 22:42
And everybody's okay with that. That's very nice. Yeah,

Nicole 22:45
but otherwise, like all our all our baking is gluten free. Everything like that is gluten free.

Scott Benner 22:52
I gotcha. Is that a financial impact? Having to eat gluten free? Is it more expensive to eat gluten free than it is to not?

Nicole 23:00
It is more expensive? Yeah. Your

Scott Benner 23:04
health insurance doesn't offer to kick in for your food bill. How nice of them.

Nicole 23:08
Yeah, like a pack of gluten free buns. Like a four pack. It's like $7

Scott Benner 23:14
Oh my god, like I'm so cheap. Don't say stuff like that to me. You break my heart. Abundance. $1.50 is what I just heard. Yeah, yeah. And there's

Nicole 23:24
always like, if you go to eat, there's always an upcharge for the gluten free buns too. So it's sort of a double whammy here. You have to pay extra for this crappy bun.

Scott Benner 23:33
Oh my god. Speaking of crap, really. Speaking of

Nicole 23:36
the texture of I compare the texture to like kitchen sponges. Oh, crap your dishes with

Scott Benner 23:43
speaking of crappy bonds. Remember when you said hindsight to tell me that your husband had celiac? That's hilarious. Okay. diabetes. Your daughter versus your son? Is this one of them handle it differently? Easier? Was it? Are you just applying ideas to both of them and they're both working?

Nicole 24:05
My son is easier. He he just prefers like lower carb foods. He doesn't like crackers. He doesn't like bread. He just wants to eat fruit vegetables on meat. Gotcha. Like his blood sugars are easier to manage. The trouble with him is he understands that he should be bolusing and Pre-Bolus seen, but he still doesn't care if he doesn't. So, Saturday mornings he'll get up at 6am and make himself what he calls a snack plate. And it might be a couple of yogurts and you know, some fruit and whatever. And so we're racing downstairs to make sure he's Bolus but if if we don't wake up, which just happened then you know, and he goes high because it get his insulin in time.

Scott Benner 24:56
Gotcha. So, so is he Does he have any? Like, what's his understanding, I guess, of the insulin needs and the food.

Nicole 25:06
He knows he has diabetes, and he knows he needs insulin. And, you know, he knows about going high and low. But he can't, like I would not trust him to like, enter his carbs into his pump. Right? Like he does not operate as pump.

Scott Benner 25:22
I understand. And does he know what it feels like to be low and high? Can he talk? Can he explain that to you? He

Nicole 25:30
doesn't go low super often. But yes. And he, you know, he will wake up at night, he's had a couple of lows. And he does wake up and come and say, I'm low, I need a juice. Alright, my daughter won't. She just sleeps through the beeping just leaves

Scott Benner 25:47
the hood. Now I'm going to ask what I think might be a difficult question. Do you have different goals for your daughter that your and your son based on their long term health? And what their abilities are right now? No, you don't know. So then how do you see it progressing when he gets older?

Nicole 26:10
Yeah, I hope that there's someone to help him. And, you know, and I've talked, you know, in his IEP at school, his individual education plan that, you know, I want him to be able to understand numbers to the extent that he could, you know, dose himself at some point. I don't know if that'll happen or not. But yeah, I mean, that's, you know, there's a lot of unknowns in the future. And I have to plan as much as I can. But, you know, at this point, I, you know, I don't know, I can't plan, you know, until we know where he's going to be at as an adult and who's going to be around him. But I'm hoping he'll have some people around him to care about him and help take care of his type one.

Scott Benner 26:59
So this is a one day at a time as the way you handle this. Yeah. Because because his you're not sure yet, of his abilities in the future. So you can't plan for the future.

Nicole 27:13
Yeah, well, I'm what technology, you know, yeah. How different is the technology going to be 10 years from now?

Scott Benner 27:19
Yeah, I guess even just the pump that would would like sometimes they talk about one day, the algorithms might work so well, and, and the insulin might work so well that you won't need to Bolus, you know, you'll just eat your body will have a reaction, the pump will be able to meet it if that would be huge for him. I mean, be huge for everybody, but especially for him. How about changing his gear? How does does he handle any of that something he can do on his own changes? Infusion sets, or is

Nicole 27:48
no, no, no. Neither one of them do that yet on their own.

Scott Benner 27:53
Okay. Gives us a big party in the kitchen when it happens. And everybody. Everybody, not a party, not a party. Is it? Uh, is it? Uh, yeah, it's just a moment fraught with yelling and running around.

Nicole 28:05
It's getting better. You know, for the first I don't know, year or so. It was, you know, the, the infusion sets have never been a big deal that Dexcom he, he struggles with the Dexcom getting that inserted, but he's getting better.

Scott Benner 28:21
Gotcha. getting accustomed to it. Are you okay?

Nicole 28:25
I'm okay. You are? I

Scott Benner 28:26
can't so I don't know you. But you have a slower way of speaking and you're very you're you think you're not modulating your voice much. And I'm like, I'm not sure if you're okay. Or this is just your personality. So I wanted to find out if you were alright or not. No, I'm fine. Yeah. Is it? Uh, is it? Do you work?

Nicole 28:44
I do. Yep,

Scott Benner 28:45
I do. Wow. Okay. So you have like a full time out of the house job. So do you get a podcast, it's much better. I said, somebody in my family the other day, they were complaining about something. I was like, you gotta get a podcast. And he's like, Yeah, and I was like, okay. But I have

Nicole 29:05
a really great job. And my job is to where I don't have to think about all this stuff. Usually. I mean, other than, you know, kind of keep an eye on blood sugar's on the app.

Scott Benner 29:16
Yeah, that's a skill. And I think a lot of people who have chronic conditions in their life, something that requires something every day, and tomorrow is not going to be different than today. Right? To be able to go somewhere and to leave it out of your mind for a while. Is is such a benefit. Yes, yes. For sure. Yeah. And you realize that it happens without diabetes, or you know, like your kids get older and they go off and you realize like, right now something might be happening that if they were here you'd help with or that they would need your help with or and they and they're still alive the next day. You know what I mean? You're like, okay, like, I don't have to be involved in every little thing. and people are still okay. It's a big thing to, to give yourself over to. And so you get to do that you get to go to work and just be somewhere else for a little while. And you don't worry, you don't worry. Or you do.

Nicole 30:14
Oh, for sure. I worry, like, you know, your questions about the future. Of course, I worry about that. But, you know, I mean, if I sat and worried about that all day, every day, I would, I would go nuts. You know, you just have to, you know, prepare. My I have to prepare my son as best I can. And then, you know, I'm hoping that there'll be people around him that will care about him. And

Scott Benner 30:39
what do you mean, when you say that? You've used that phrase a couple of times? What do you mean, when you say that people around him

Nicole 30:44
just caregivers, you know, just a family caregivers, just people that they care about him? Yeah. And it's life?

Scott Benner 30:53
Is that a thing? Here's a question because of Down syndrome. Does he get to stay on your health insurance forever? Or does he get kicked off when he's 26? Like everybody else?

Nicole 31:04
Yeah, I don't think he gets to stay on my health insurance forever. No, I think he gets kicked off and will be on whatever they go on. Like Social Security and medical assistance. I'm not sure.

Scott Benner 31:14
Okay. Yeah, something's frozen. For sure. In Minnesota. Seriously, have you ever considered moving somewhere warm?

Nicole 31:23
No, not really, I guess.

Scott Benner 31:25
Oh, my God, if I went to Minnesota, the only thing I'd be able to think of is getting out of Minnesota, just because of the cold for no other reason I hear it's a lovely place. But the cold? Is it just it? I can I can feel it. Now as we're talking about it. It feels

Nicole 31:39
like it hasn't been so bad this winter. It's actually been a pretty mild winter, we've had a lot of snow, but the temperatures have not been too bad. And then

Speaker 1 31:45
interesting here as well. By the way, there's been two really cold days so far. That's it, and they were concurrent. And then it was just over. It's I'm assuming that the global warming thing Israel. Okay, so you who's your husband? That was in my head earlier? Is he have like the does your husband have like the basic like, Guy attitude is like, it's fine. We're all good. And or is he like, right in the fight with you help him with all this? How much is he involved with this stuff?

Nicole 32:15
He He's involved in helping, he doesn't do as much of the like adjustments to Basal rates and correction factors. But he does all of the ordering. And you know, keeping up with that he I would say he does a lot of the more probably more of the set changes than I do.

Scott Benner 32:37
Set on purpose, or is it just how it shakes out?

Nicole 32:40
Just how it shakes out, I guess. What would

Scott Benner 32:43
you it's interesting, isn't it?

Nicole 32:46
I mean, he doesn't listen to your podcasts.

Scott Benner 32:49
What a son of a bitch. I didn't realize that well, okay.

Nicole 32:53
He doesn't listen, sometimes he listens when we're in the car together. And that's what made me contact you. Oh, tell me as it was the eat the damn cupcake episode. And we were in the car together listening and it was just making him mad. And he's like, You have to contact him you have to. And I'm like, whatever. Then it came up in another episode.

Scott Benner 33:17
We revisited it and talked about I actually had somebody come on to basically to yell at me. And so they took care of what he

Nicole 33:24
wrote. Anyway, that's why I reached out because we had listened to that together and

Scott Benner 33:29
Okay, well, here we are. So now we have to explain it in a call. Now I get to I get to be shamed again. Alright, contextually gentleman's on the show, talking about a newly diagnosed child. It's, if I'm not mistaken. It's a second child with diabetes. And he's feeling overwhelmed at the fact that, you know, the losses that are that he imagines coming this child's way. And he gets very stuck on the idea of like, well, now they have, you know, they have the celiac diagnosis to to fight with as well. And what if they want a cupcake and a birthday party and he was having Would you agree with me, he was having an emotional crisis while he was talking about, is that fair? I don't see you don't even remember that your husband was pissed. So so so. So Josh, Josh has been a great guest on the show a couple of times, and I think this episode was, Josh has even more feels or something like that. And he's, he's really upset. Like he is he is upset. And I asked him something about like, Well, what happens? Like he was kept saying cupcake, like, it was like, some important part of his life. And I said, but what happens when, when the kid eats the cupcake? And he says, Oh, nothing, you know, my silent cilia? Yeah, no symptoms of celiac at all. And I said, Well, why don't you just like, um, like water, their cupcakes constantly, like are they just like falling out of the sky? And we were always faced with eating a cupcake or not eating it, okay? And the answer was no, like, um, just worried about like once in a while at a birthday party. And I said, well, until you can figure this out, let's just let them have the cupcake. And I was saying that, if I'm being honest, I wasn't thinking about the celiac, I was thinking about the mental wellness of the man I was speaking to, you know what I mean? And, boy, did people not like that. Cheese, like at all lot of email about that. And so, silence celiac, can you give me some context for that?

Nicole 35:25
Yeah, they don't have any outward reaction, but their intestines are still getting damaged.

Scott Benner 35:32
Right? And it can lead to things up to and as serious as cancer. Yeah, yeah. Yep. Yeah, those are the emails, oh, you're

Nicole 35:39
in an osteopenia. And like, if you're a woman, fertility issues,

Scott Benner 35:44
all these things could be happening. So you could, you could have celiac, and yet not get any of the cramping or the bathroom visiting or any of the other stuff that comes along with it not feeling well, after you go to the pizza joint. Like none of that could happen, you could just absolutely have no trouble at all, but still be experiencing the internal damage.

Nicole 36:04
Yeah, or maybe the symptoms are just subtle enough that, you know, you don't really like my husband, you know, like, before he was diagnosed, he just didn't realize it, right? Well, in some some of the symptoms, my husband used to have a lot, a lot of migraine headaches. And once he went gluten free, you know, he doesn't have near the number of headaches that he used to have.

Scott Benner 36:29
Right. So anyway, not great advice. But like I said, I wasn't I in that moment, if you go back and listen to what I think you'll have context for it. But I was just trying to say to the guy like, well, listen, like you're killing yourself here over this idea that there are going to be an endless parade of birthday parties that include cupcakes that your child is not going to have involvement with. And

Nicole 36:51
and I think, you know, from his perspective, and, you know, nobody takes it seriously. And it was just another add on to that.

Scott Benner 37:00
Yep. No, I understand. I actually I really do. I've had a number of conversations about it since then. And trust me, I completely understand. I'll never say that again. That's for sure. So

Nicole 37:09
what? That that's the difference, like tier one, everybody like, oh, yeah, that's serious. You know, we got to take this really seriously. And celiac is not that way. Yeah. You know, you're you're almost treated like you're crazy. Like, oh, whatever, or because

Scott Benner 37:25
it's also because it I'm assuming that if a person is on the outside of it, and doesn't understand it, and I even did it, like, you know, like, you can joke about it like, like, oh, what happens? You thought if you go the bathroom? Like that sounds like not a big deal to somebody who doesn't understand what a big deal it is. And, you know, I can get that. You're also making me wonder if Scrooge didn't have celiac?

Nicole 37:52
I, I was I was feeling so guilty. In that year, between Well, the two years, I guess, between my daughter and my son's diagnosis, because I thought my daughter develop type one because she had untreated celiac for so long undiagnosed celiac for so long.

Scott Benner 38:14
Oh, oh, gosh, is there any chance that that's not true, though, right?

Nicole 38:19
I'm not sure. I'm still not sure. But then, you know, my son got it. And my son only went a year or less than a year with having celiac and not being diagnosed and he still got type one, you know, cuz he was screened every year at his checkup. So, you know, we know he didn't have it when he was six. But by the time he was seven, he, he tested positive, and then his endoscopy showed still pretty mild damage. It was really patchy. So he had not had it very long when he was diagnosed.

Scott Benner 38:54
I see. Yeah, I mean, I don't know how to speak to that. All I can say is that, you know, they say once you have an autoimmune issue, you're not that crazy if you end up with another one.

Nicole 39:05
Yeah, yeah. My husband. So you always ask, you know who in the family My husband is the one and he has multiple autoimmune issues?

Scott Benner 39:15
Your husband does?

Nicole 39:17
Yes, yeah. He has psoriatic arthritis, arthritis, and celiac and vitiligo.

Scott Benner 39:24
How does the arthritis impact him?

Nicole 39:26
He it's, well, you should ask him because I feel like his interpretation or his view, and it would be different than mine. It's not super severe for him yet. He's not on any medications for it or anything. But of course, when he has a flare of it, you know, he feels pretty poorly I guess,

Scott Benner 39:47
throughout his body joints, certain places,

Nicole 39:50
no, psoriatic kind of effects one spot, like it'll be one finger will swell up and get all sore and stiff. And then that'll go away and it can be pop up in another fingers. You know, a few months later. It's

Scott Benner 40:04
just interesting. It sucks. It's interesting. I thought for sure. You were gonna say, when it pops up, you can only have sex in February. I really thought that's where you were gonna go for me to call but you didn't it's Don't worry, the pressure is not on you. Did you get the Scrooge reference?

Nicole 40:20
That while he was crabby,

Scott Benner 40:22
I don't know. Remember he says to Marley that you might be an undigested bit of beef. And he starts talking about how he doesn't think that the ghost is really there, but it's something that he ate.

Nicole 40:32
I don't know. Yeah, no.

Scott Benner 40:36
Maybe the Christmas carol never happens without celiac because I'm getting it. It's a stretch, but maybe it was people were British, right? Yeah, I think so. Yeah, exactly. You think so? They spoke funny in the movie.

Nicole 40:50
I obviously haven't seen the movie. You've never seen him?

Scott Benner 40:52
Well, you know?

Nicole 40:54
I don't know if I've I don't recall.

Scott Benner 40:57
Now gonna make me wonder what everyone's favorite version of a Christmas carol movie is. Apparently you don't have a dog and I don't so I'm not gonna be asking you

Nicole 41:07
know. My favorite Christmas movies elf so.

Scott Benner 41:14
Oh, is it with? Oh, where's the guy with the head? Why do I think I'm just having a big head? That funny. Will Ferrell Will Ferrell. Thank you.

It's like the guy with the head. What a description. Nicole. I can't believe you didn't get it.

Nicole 41:35
Oh my gosh. So an interesting movie like, relative to diabetes. Right? He's eating candy and syrup on spaghetti.

Scott Benner 41:43
Yes. Yeah, that definitely would be hard to Bolus for syrup on spaghetti. I'm not sure where I would start with that. But I think there'd be an extended Bolus in there for probably at least five hours. At the very least. So you like the podcast?

Nicole 41:57
Yes. Yeah. And my daughter listens to sometimes.

Scott Benner 42:00
Oh, that's lovely. Thank you. What did you because you you know, earlier, I asked you a question. Like what helps you get through you said information support community, and patience? Did the podcast offer any of that for you?

Nicole 42:15
Yes, for sure. You know, just that you've had many people on that have had multiple issues or I know you've had other parents of kids that have Down Syndrome on and or other issues. And yeah, it's just it's helpful to know that there's other folks out there. But mostly, I would say the the management information has been what has been really, really helpful.

Scott Benner 42:43
I'm glad that's excellent. Down syndrome or trisomy, trisomy 21, trisomy of chromosome 21. The most common genetic disorder associated with autoimmune is down yet syndrome autoimmune.

Nicole 42:58
No, but that's, it's just a random, you know, error when your gametes are being formed.

Scott Benner 43:09
The rest of it says, auto immune regulatory regulator.

Nicole 43:14
They can be they can have more auto immune issues.

Scott Benner 43:19
After this is your reality. Yeah, transcription factor located on chromosome 20 plays a crucial role in autoimmunity by regulating promiscuous gene expression. PGE. That's interesting. Strange. Why did you want to come on? Was it just the cupcake thing? Or was there more

Nicole 43:41
for my daughter to Yes, because I think she I think I knew that she would probably like that.

Scott Benner 43:48
I would say hi to her, but I don't know her name. And I don't think you want to say it. But I'll just say hi. Anyway, hey, daughter, what's up? Very, very feeling and emotional for me. It's interesting that you can't really talk to somebody without knowing their name, huh?

Nicole 44:01
Well, I can see your name. It's byla.

Scott Benner 44:04
Oh, I didn't know we were doing that. Lila. Yeah. I love that saying your last name. No, no. Also, I need her address and what locker number she has. No, Lila, it's Hi. How are you? Thank you for listening to the show with your mom. Do you think she learns from it? Like, do you think she picks stuff up about diabetes from listening to people talk about it.

Nicole 44:26
I try to remind her, she she really does not want to Pre-Bolus She has so much trouble. So she's a snacker. She would. She'd never wants to eat a big meal. She just wants to snack all day long. And she doesn't want to Pre-Bolus and I always say well, you know what we've learned on the podcast. It's so important. I don't know. You know, she's 10 Yeah,

Scott Benner 44:52
I know. That sucks. Really? Lila. I'm talking right to you. Now. I know. It's well made if she's constantly snacking, though. What if she just I don't know, what if she made a little Bolus than eight to the insulin once in a while?

Nicole 45:05
Yeah, yeah, she does that. I think sometimes Yeah. Like, yeah, over Bolus is for what she's maybe going to eat and then just keeps eating more. You know, she, and she gets upset, you know, when we say you can't just eat chips, you know, you can't just walk by and grab a handful of chips every 10 minutes, you got a Bolus for the hosts, ya know what it's like? And I'm like, I know. This is the way it is for you.

Scott Benner 45:34
Do you think you said, so this is interesting. Because I've been told, I don't know what it's like, I'm sure we all have. The I mean, I know you don't have diabetes, but functionally, you understand what she's concerned about. But there's that one piece of it the upsetting piece of like, you don't understand, like, what it's like to be inside of my body and my mind when this happens. And yeah, it's hard. Right? Not to be able to commiserate with them. Yeah, for sure. Yeah. It because you want to, you want to be in it with them. And and they're not wrong. Like you can't. You just there's this is the this is the cutting point, right. This is the edge where we move on from what you can understand to what I can't explain to you.

Nicole 46:18
And I, you know, I've told her how many times you know, if I could take this away from you, I would if I could take this from you and give it to myself. I would but I know you can't do that, obviously,

Scott Benner 46:28
you know, I had an adult with type one telling me not to say that to people recently. Because I've heard I've, I, I think we've all made that statement to somebody in our life. Like, you know, I would take it if I could, but I forget how they put it. And I don't know, she was just really passionate about it. Now, I'm not remembering the details of her passion, but that she just said, I wish my parents would not have said that to me. I was like, Okay, thank you. It's interesting to you're off to figure out where it's at and tell you. And by that I mean, I'll have to ask some of the people who helped me with the Facebook group where that happened, because I never know where anything's in the podcast. But there are people who do know. Yeah, and it's because I don't know, I forget what she said. If it wasn't something like well, you can't take it. So stop saying that. It's an empty gesture, I think was the chair. Yeah, it was the idea.

Nicole 47:15
I can get that I guess. Yeah.

Scott Benner 47:17
Yeah. Well, I will definitely not tell Josh to just give us get a cupcake. Tell your husband he's he handled that pretty well. Is that why he doesn't listen? Did he listen before that?

Nicole 47:30
No. Well, just like when we're in the car together.

Scott Benner 47:33
Yeah. But it's not like I like he heard that. It's like That's enough of this. And that was the end of it. No, no, no. Gotcha. Is he busy ice fishing? Is that what's going on?

Nicole 47:44
We do ice fish when we have time. But my daughter's in hockey, which is kind of a big deal in Minnesota. So we don't really have time anymore to go ice fishing. Can you

Scott Benner 47:55
do it at the same time? Why would the hockey people not set up on the sidelines a place that?

Nicole 48:02
We have we have done that? The trouble is there's a lot of snow on the lakes

Scott Benner 48:07
usually, so they don't play hockey on the legs. Well, if you

Nicole 48:10
maintain a rink on the lake, you can but that's it's easier to do it and inside.

Scott Benner 48:18
I was joking about all those things. And they all turned out to be real things that you do. Yep. Like let me say the most ridiculous thing I can think of what if you cut holes next to the hockey rink so you can ice fish while your kids are playing hockey? And you're like, yeah, we've done that.

Nicole 48:35
We have some really great video of we hooked our dog up to a hardest. So we have dog harnesses for like skiing behind dogs and stuff. Of course, we hook the dog up to my daughter and her ice skates and it was a winter where there wasn't a lot of snow in the dog was pulling around on the ice. It was kind of

Scott Benner 48:53
funny video that I'd like to see that. I do somewhere. Actually, don't send me your personal video. I don't want to be involved. But I would like to see it if it was on social media somewhere. You know, Lebron James? Just he just surpassed the scoring title, right? He just beat Kareem Abdul Jabbar NBA scoring. You don't have to care about basketball like this. There. I don't hear this story. And there's a photo of him taking his last shot. And everyone in the crowd is holding up a cell phone. And someone put up a photo of Michael Jordan taking his shot where he like beat some record and there's not one person in the crowd holding a phone. It's very interesting. Like, like, it's just interesting how like having a phone in your pocket has changed or like you were like, Oh, I did this once with my dog or my daughter does this. And I'm like, Do you have a video? And you're like, Yeah, I have one. It's yeah, so it's super interesting. Hey, everybody, better help as a sponsor of the podcast, and they're offering my listeners 10% off their first month of therapy. It's a great deal. I hope you can check it out better help.com board slash juicebox. Now BetterHelp is the world's largest therapy service, that is 100%. Online, they have over 25,000 licensed and experienced therapists, they can help you with a wide range of issues. All you have to do to get started is hit my link, answer a few questions about your needs and preferences in therapy. And that way better help will be able to match you with the right therapist from their network, better help.com forward slash juicebox, you're gonna get the same professionalism and quality as you expect from in office therapy. And if for any reason your therapist isn't right for you, you can switch to a new one at no additional charge, do therapy on your terms, text chat, phone video call. And you can even message your therapist at any time and then schedule a live session when it's more convenient. So if you're looking for someone to talk to check out better help. Is there anything that we haven't talked about that we should

Nicole 50:59
just that silly EQ is really socially airy can be really socially isolating? And that's again, probably why that statement may be triggered by husband a little bit. Oh, no, I eat the cupcake. Because that's why, you know, when you asked me, if there's one thing to take away, I'd say type one because that has, you know, obviously more acute health consequences. And you know, celiac there, you don't even have to treat it with a drug, you just don't eat gluten. So pretty easy. But our society still just as so involved with food and going out to eat and you know, food rewards and school, that's been really difficult for my daughter, especially to handle. Okay, you know, she has a 504 plan. And her teachers have been really, really good about, you know, checking with me, usually, but there's always the time like, Oh, we're gonna have treats today. And, you know, they forget to let me know, or let her know, and she doesn't have anything to eat, you know, with everybody else. Or the hockey team is like going out to eat after the game. And you know, they pick a restaurant that doesn't have good options for her. So

Scott Benner 52:12
you know, you just, you just made me think of something. So, in your home, all the foods that are available to your daughter are gluten free. Yep. And maybe the snacking is like her way of being like, look, I can do whatever I want. Like control, like, like I can, like chips don't have gluten in them. I can grab a chip and have it right now because it's gluten free, and it's fine. And when I'm out in the regular world, I can't eat like that. But then the diabetes comes along and stops that autonomy that she has in your house. I wonder if there's not a connection in there for why she feels that way. Because then the diabetes, the pro the Pre-Bolus thing got in the way of the thing where she got the feel like I can do whatever I want to do. Maybe that's why it bothers or extra. That makes any sense or did I make that up?

Nicole 53:06
No, I think it does make sense. I so she she has a therapist, and I have mentioned that to her therapist, and like you know she she wants control of something. Because there's so much in her life she doesn't have control over

Scott Benner 53:22
Yeah, just as you were explaining how that's different how celiac can be difficult difficult in the world. Like I started thinking like, oh, maybe that's why she's like rubs up against the Pre-Bolus thing so much.

Nicole 53:35
So she Yeah, she she paddles any any one telling Well, her dad and I more so than others but telling her what to do. Yeah, you know, and I'm pretty sure it's like control thing like she just is wanting control over something.

Scott Benner 53:54
Personality wise. Is she more like your your husband? Oh, man.

Nicole 53:59
He would say me. I mean, you know there's a mix, obviously, but she probably gets her stubbornness for me.

Scott Benner 54:09
You don't come across this stubborn. This is a one hour conversation. We settled in and really had a conversation about three hours from now I'd be like, Oh my god, Nicole's a problem.

Nicole 54:25
Do well, headstrong, like Yeah, no, that's not necessarily a bad thing that serves people well in life.

Scott Benner 54:33
Oh, no, it's not a problem for you. I'm just talking about for me if I'm trying to get somewhere and you're like pushing back constantly and no, God is that uphill? I interviewed someone the other day and I said to them, like 20 minutes into this. I'm like, You're not going to make this easy at all, are you? She laughed and she's like, probably not. Which I think is terrific. I don't I don't mean to say that. Like I don't see headstrong or, or you know, any of those. Any of that. phrasing is a bad connotation. Like, I think it's great when people stick up for each other. And for themselves. I had a meeting yesterday with my mom's care team, where I got on the call and my wife's like, don't yell. And I was like, I am not gonna yell, and she goes, you're definitely gonna yell, don't yell. And I was like, Alright, I will. So I got on the call. And I'm, and my brother's there in person. And I'm like, Hey, what's going on? Like, how come it hasn't started yet. And he says, Oh, this person's late, and this person's late. So two entities that are in my mom's life that had failed her a number of times, because of poor management, and just generally seeming inept, couldn't get to the meeting on time, they were in a completely different part of the building. And I thought, Okay, I'm gonna let that go. Right in the call, I'm gonna let that go. Anybody could get the wrong room, it's fine. This isn't just because they're bad at everything. And they came into the room and, and the first little bit that we talked about went very smoothly. And then someone said something stupid, that was just gonna lead back to the problem we were there to talk about. And all I know is that like, 15 minutes later, I found myself flex, cursing, and then it all ended. And everybody left. My brother called me back. And he goes, Wow, good job. We got everything we needed. And I was like, I'm sorry. Was it uncomfortable? Because I imagined Nicole, you said you're an introvert. But did you say that before we got on the on the microphone, maybe?

Nicole 56:35
Yeah. Well, I said it when you asked me to turn my

Scott Benner 56:39
Oh, the camera. Yeah. So just I brought it up for context. Can you imagine being in a room with six people you don't know, while disembodied voices yelling at them? And they're looking at you? How would you like that?

Nicole 56:52
Yeah, I don't, I don't think I would like that.

Scott Benner 56:55
So I said to my brother, I'm like, I'm so sorry. He's like, no, no, he's like, we worked it out. He's like, You got everything mom needed. And I was like, okay, but I don't see that as like a bad thing. Like, from my perspective, this is coming back to what I said earlier. Like, I didn't leave that call thinking, Oh, I, I shouldn't have done that. I think that's exactly what needed to happen. Everything worked out in a way that it wasn't going to they were going to screw my mom six ways from Sunday if somebody didn't stick up for. But I don't imagine that they got in their car and felt good about the interaction. So I don't see being headstrong as being a bad thing. But anyway, I'm sorry. I just I, I just felt like, I felt like, I came off wrong when I said that, because I don't I don't see that as a bad thing. I don't like I would be so worried that people might hear anything. They think like, Oh, sure. When women stick up for themselves, nobody likes it. I love it. I had such a good time fighting with that lady that I was talking about. And then later in the afternoon, my brother called me back. And he's like, are you okay? He's checking on me. And I said, Brian, never tell anyone this. Now I'm telling everybody. I said I had such a good time. I loved it. It's the most fun I've had in weeks. I love arguing with people on the call anyway. Is your husband.

Nicole 58:15
It helps to have, you know, to have a stronger personality or advocacy tendencies when you have you know, the kids that I have.

Scott Benner 58:25
Yeah. And you have that right. So like in your even though, like you don't know that you come off. You're coming off meek. But it's just your speech pattern. And you're like, you're like I said you don't not modulating your voice a ton. But you're not in your personal life. You're you're out there fighting with those people, right? Yes, yeah. Yeah.

Nicole 58:44
Gotcha. It well, not fighting. I mean, working with you know, I, like we've been really fortunate to have some really good, like, the school nurses we've dealt with have just been fantastic. But yeah, we did have, we had to move change schools for our kids this past year, because there was just a situation we could not work out at our previous school. So I guess my point is, I try to work with people. But you know, at some point, there's a time to cut ties and move on.

Scott Benner 59:21
Yeah, that's about the time I start yelling, forgot them. I was so calm until I wasn't, they were like, Let's put a care plan into place. I'm like the care plan is what put her in the situation. And you're telling me that the fix for the care plan that wasn't carried out by the staff is to put a different care plan in place and then remind the staff to take care of the care plan. I was like, that's your idea of how to make sure this doesn't happen again, just above me in this room, like because nobody's going to do that. Like it just I don't know. Like I don't I don't see everything in life like that, but about these very important issues. You In my mind, it's a, it's a turf war, like, we're, you're on one side of that line, I'm on the other sideline, and I'm trying to push you back and get you to do what I need you to do. And in my mind, they're trying to do it too. They're just trying to be nicer about it, because they work for somebody. And they're trying to be professional while they're doing it, I don't have that problem. So I can't get fired after the conversation ends. So I got to put and I don't want to come off, like I was happy to speak like, pleasantly with them. I think people listening would imagine that. But as soon as it started down, that like, pandering, just below the path that it was heading down, they were just gonna say the same thing again, and try to get me to go along with it. And like, that's not happening. I was like, You guys almost killed my mom. And now I should just assume I should just trust you won't do it again. I'm not doing that. I was like, This is what you're doing. You're doing this and I laid it out for them, like, these are the things you're going to do. If they don't get done, we're gonna have a real problem medical

Nicole 1:01:00
care, or is she in a nursing home, and I'm gonna ask him because my mom just went in a nursing home a couple of months ago.

Scott Benner 1:01:07
So my mom's place, I don't know if you would call it a nursing home, but they help her. So she's got her own apartment. My mom's very, like, you know, autonomous, she needs a little help making sure she's stable in the shower, and a little help cleaning up after she uses the bathroom. Right? Those are like her, like her sticking points. And then they just don't do it. And they said, well, it's not in the care plan, or it's this or and then she got sick. And as her health was declining, they all noted that she that her health was declining, but never did anything about it or contacted anyone. And it was. So the one that ended up happening was very common for older people. My mom apparently had a UTI. She was declining. And my brother happened to be on a shift where he was working nights. So we couldn't see her for a few days in a row. And I was sitting here editing one Sunday night. And it just struck me like I didn't talk to mom and last two days. That's weird. That shouldn't have happened. And like I always talk to my mom, she calls me and I call her but like, you know, all of a sudden, I realized I had been busy. I hadn't spoken to her. So I texted my other brother, not the one who lives where she is. And I said you heard from mom last couple days. He said no. So I contacted Brian, where my mom lives. And I said something's wrong with mom. And he's like, like, you know, I guess he initially thought that I knew that were something like, like, specific. He's like, what, like, what's wrong? I'm like, I don't know something's wrong. I haven't heard from her in two days. And he was like, that. That's why you think something's wrong with mom. Like, there's definitely something wrong. He's like, alright, well, I work tonight. And I'll get over there tomorrow and see her and blah, blah, blah. And that morning, I got a text from his wife that said, hey, you know, your mom fell out of bed. And that didn't seem right either. So it's like, wait, what and she's like we're going over we'll be there in a couple of hours. And by the time they got there, my mom was almost catatonic. Like just gone. Like she couldn't stay awake for five seconds. My brother and I were talking, I'm like, Just take her right to the emergency room. Like don't talk to those people there. Just put her in your car, drive her to the emergency room. And we got her there. He got her there. And she's got a UTI, they have to hit her with a big dose of antibiotics. And then she seems like a few and they hydrate her. And a few hours later, she's like, I'm FaceTiming with her and she's she's good to go. And then she wakes up the next day. And it's slurred speech, no memory, like really bad. And it goes on for days to the point where they're giving her like scans and telling us she might not recover from this. Like she sounds like she's gonna die. Like it's just I've never seen anybody slip away so quickly to the point where I had to call my kids and say you need to reach out to Grandma mom, because I'm not sure if she's okay, or how long she's gonna be okay. I don't know, about five days into her hospital stay. She just came back to life. It was I guess the infection finally got through her and everything. So I got on the phone yesterday. And I said, Well, you guys tried to kill my mom, you didn't quite get it done. Let's make sure it doesn't happen again. She was perfectly healthy when she got to you. And two months later. Not only are we in the hospital, but I had to figure it out like remotely or my brother wouldn't have been able to go to sere. I don't I think it's possible. They could have just killed her right there. Because they were not paying attention. She slid out of her bed crawled across the room called for help. And they just got her back in bed and said she seemed tired. That was that they didn't know what they're doing. So there's three levels of staff there's on the floor staff which is described to me as younger people who don't seem like they have a ton of training. And I understand it's probably not a great paying job. And I don't assume it's a job, anybody really wants to get that. So then there's the overseeing above them, which apparently isn't making sure that things are really getting done in the overseeing above that person. That's, you know, everybody's just checked boxing. So I'm on the phone, I'm like, Listen, my mom's not a cleaning schedule, in the bathroom of a gas station. You don't just walk in every hour, rub the mop on the floor and check the box off and leave. Like, that's not like your that I know, that's what you're doing. And it needs to stop. I was very demanding. But at the same time, I think this is the state of eldercare. My mom's not in some crappy place, you know what I mean? And so I, I just realized, you know, I was talking to my brother afterwards. And I said, Look, we're not going to fix the world here. Like, like, you're not going to make these people suddenly care about their job, you're not going to make them, you know, do what they're supposed to do. I was like, you have to, we just have to put the fear of God in them that if if they kill that one, if they kill that lady, they're gonna have a problem. And that's what I think I did yesterday. And hopefully that'll hold up for a while. So I don't I mean, like, it's, you can go ask people all you want, like to do the right thing, but I don't know that you're gonna actually get them to do it. Anyway, that was my perspective. And we'll see how it goes. I'll report back.

Nicole 1:06:17
Yeah, we're dealing with similar issues with my mom, but she's in a memory care unit. So you know, I think they are checking on her more often, I don't think that she would go sort of semi responsive in a bad for very long.

Scott Benner 1:06:31
Yeah, without somebody noticing and doing something. It's just fascinating. Like, they, you know, my, my sister in law looks back now on this the communication she had over the week with a place and at one point, they said, hey, you know, your mom's not been going to dinner. She's been eating in a room a lot. And she didn't want to go to some functions and like, okay, like, you know, and then it's, she's been sleeping a lot, then that has she slid out of bed trying to get up. And then and so she's declining. And they are just acting like, it's not it's, it's not even of note, like, and my sister in law said, I asked how she was nobody offered that information. Even after she fell out of bed. They didn't call us. And so, you know, it just it just hit me. It was like, if we wouldn't have like, figured that out. She dies there and they go off. You know what they would have done? They would have said, Look, we did everything we're supposed to do. Here's all the checkboxes, you see them all filled in, and all people get UTIs What are you gonna do? That's exactly what would happen. And, you know, I was on the phone yelling things like, I think I said at one point, cancer didn't kill that lady. A full hysterectomy didn't kill her. A year of chemotherapy didn't kill her. I was like, this didn't kill her. That didn't kill her. This didn't kill her. She's been alive for 80 years. She's okay. I was I think I said Nicole. And you people can't keep her ass clean. And that's what's gonna kill her. I was like, that's not how my mom's going out. I was just like, This is ridiculous. I said, the most avoidable problem. And you guys can't avoid it. It's just, it's fascinating. So anyway.

Nicole 1:08:14
You know, it's a conundrum. It's like, you feel like, this is how I feel, I guess with my mom in those facilities. Like, she's just another one. You know, they come there and they stay there for a while and then they die.

Scott Benner 1:08:28
Yeah, there's no way they don't feel like a waystation. Yeah, yes.

Nicole 1:08:33
It's, it's, I'm sorry for you. It's I know, it's so hard to deal with.

Scott Benner 1:08:37
No, it's, uh, don't worry. I enjoyed yelling at them. So there's, there's a, there's a person I've

Nicole 1:08:45
told my brother that like, he he's the one that lives closer to my mom and locally. And I'm like, I'm sorry that you have to deal with all this. But I have these two kids. Yeah, no, keep it alive.

Scott Benner 1:08:57
We had we had this similar situation where my mom used to live closer to myself and my and our youngest brother. And we we did a lot of it. My youngest brother actually lived closer to her and did more than I did for certain. And but then my middle brother who had moved away and lives more near where you do, you know, he's like I, you know, I'd love to see mom, you know more. And there's this place this great place near my house and everything. And so my mom was actually getting ready to move to Wisconsin when she found out she had cancer. And she basically we use that move to Wisconsin is like a carrot on a stick to get her through everything. Like like Mom, this is what you're working for. You know what I mean? And then she my mom beats cancer, lives through chemo, gets a clean bill of health gets COVID the day she gets her clean bill of health from cancer has to sit around for 20 more days before she can leave. Get her back on her feet. Get her out there. And you know, she lives with my brother for five weeks before she can move into the other place. She's doing terrific moves in then two months later, we're dragging her to a hospital. She's almost dead. And I was just like, what is all this for? You know, like, I hate to be that person. But I've now said it a number of times in the podcast, I'm treating the next 15 years of my life like that's it. And I don't mean that I think I'm going to die when I'm 65. But the things that I've seen my mom battle with, if one of those things should happen to me, like your life's not going to be like, retired in Bora Bora. You know what I mean? Like that, because I think that's what we all imagine, like, right now you're like, that's fine. I'll raise these kids, I'll save some money, and then all blah, blah, blah, but in less healthy incomes, and then you're not doing that stuff. So I'm just doing it now. And then at the end, I'll just like, then, then I won't feel like I missed out on something. I assume. I'm hoping, I don't know. But anyway. So like,

Nicole 1:10:50
I feel like I have to live forever. So I do try to like, take sort of good care of myself. Because I you know, I do feel like the longer I am here, the better care chi will get, you know, my son,

Scott Benner 1:11:03
I didn't bring that up. But that's not not a real thing. Like you're out in a mall or in public. And there are adult people with Down Syndrome who are alike, accompanied by an 85 year old mother, who is the surprise person I've ever seen in my life. Right? I vote. It's improper to say, but I did once say to somebody, if only my health was as good as the mother of a kid with Down syndrome. I actually said that, because they're always like, it's almost like you, like you're not allowed to get older, sick or die. You know what I mean?

Nicole 1:11:36
Yeah, we had a really interesting encounter with a family like that. A couple of years ago, on vacation, we were up on the North Shore, like up on Lake Superior, and a really teeny, tiny little town, in a coffee shop with like, literally eight seats. And we were there grabbing breakfast. And in walks like, elderly set of parents and an let me be like a 4050 year old woman with Down syndrome. And what were the chances of that, that there'd be like this little tiny town? Yeah, this little tiny coffee shop? Two families?

Scott Benner 1:12:18
Well, so I'll tell you, I don't know what the odds are the two of you being there at the same time, but the odds of them being that old and that I believe in? Like, I really do believe in that. I just I've seen it too many times. Like it's, I mean, I'm sure it doesn't happen for everybody. It's not a magic thing. Like you don't get to live forever if your kid has Down syndrome, but like it's not. It speaks to what real purpose can do for you. And a sense of responsibility. You know, like, everybody likes to say like, I don't want to do this, or I don't like this job or anything. But like, you know, you have you have a responsibility. It's a reason to get up. It's a reason to move. It's a reason not to give up when things could get you, you know, it's probably part of why you You are the way you are and you know, I mean being introverted is hard, but you probably have to push out of it a lot for your kids.

Nicole 1:13:12
Yeah, and for my job, too. I mean, so I'm a biologist, and I would tell you did a lot of biologists are introverts. So

Scott Benner 1:13:21
that's interesting. I know my wife is my wife has a biology degree. She's introverted. Yeah. But her whole day is talking to people. It's kind of ridiculous. How it ended up working out. I know it does. exhauster a lot of times, like pushing through it seems to kick her ass a little bit. Does that happen to you? Do you feel tired at the end of the day, or it might not have any ability to be tired?

Nicole 1:13:45
Exactly.

Scott Benner 1:13:47
When do you sleep while you're driving? Oh my god. All right, Nicole. Well, you were really lovely. I appreciate that. You came on here and and talked about all this with me. Thank you very much.

Nicole 1:14:00
Yeah. Well, thank you for having me on. It's

Scott Benner 1:14:02
my pleasure. And hi again to your daughter,

Nicole 1:14:04
not letting me give you grief about the way you handled celiac before.

Scott Benner 1:14:08
Oh, I can't wait. I'm assuming every few months, somebody's gonna say it to me for the rest of my life. And that's fine. Because then we get to have the conversation again. And then my, my misunderstanding turns into education for other people. And I'm good with that. You know, like, I mean, something has to be the catalyst for the conversation

Nicole 1:14:25
or other but overall, no, thank you for all of the you know, good advice that I've heard on your podcasts over the years I've been listening now.

Scott Benner 1:14:37
It's my pleasure. I appreciate you saying that. And it is nice of you to end on a like positive thing. was very nice of you to

Nicole 1:14:44
Alright, Minnesota, Minnesota. Nice

Scott Benner 1:14:47
minute. Is that is that the phrasing Minnesota Nice? Yes.

Nicole 1:14:51
Yeah. You've never heard that. Oh, you gotta google it. I'm sure there's tons about it. So while

Scott Benner 1:14:55
you're putting up with that quarterback long after he's proved that he's no good

Nicole 1:14:59
quarterback, he's Got a quarterback. Oh, you mean? Oh you mean the Vikings? Yeah. Gosh, I am so not into football, Scott. Sorry.

Scott Benner 1:15:07
I can tell you why. I just wanted to make a joke about how bad your quarterback was. That's all.

Nicole 1:15:12
I'm with Yeah. They're bad. I'm sure I've I don't follow the Vikings. I end up probably be ostracized now by everybody that

Scott Benner 1:15:20
knows. Maybe they all hate football too, and they're just afraid to say it. I mean, everybody in Wisconsin can't love the Packers. Some of them have to be pretending. Don't you think?

Nicole 1:15:32
I I'm not gonna I have no idea that's gonna come in.

Scott Benner 1:15:36
I'm not getting involved in something as fraught as a conversation about football. We can talk about anything else if you want but not that. All right. Hold on one second for me. Okay. Okay.

Huge thanks to Nicole for coming on the show and sharing this story with us. I also want to thank touched by type one and remind you to go to touched by type one.org and find them on Instagram and Facebook. Special thanks as well to better help better help.com forward slash juice box use that link to save 10% off your first month of therapy don't forget to check out the private Facebook group Juicebox Podcast type one diabetes. Lastly, thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast.

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