#1047 I Love Tall Boots
Rebecca has type 1 diabetes, celiac, Hashimoto's Raynauds, Mast Cell and more.
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Scott Benner 0:00
Hello friends and welcome to episode 1047 of the Juicebox Podcast.
Today I'll be speaking with Rebecca who has had diabetes type one for 42 years. She also has celiac, something called neck crow BIOSIS live, you'll find out about that later Hashimotos Raynaud's and mast cell activation syndrome I wish I could pronounce the other thing I'd tell you about it now. Anyway, 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. Don't forget if you use the offer code juice box at checkout at cozy earth.com You will save 40% off of your entire order. Speaking of great deals, the diabetes Pro Tip series is completely free and waiting for you at episode 1000 and it runs through episode 1026. What else can I tell you? Are you newly diagnosed, try the bold beginning series. Check it out at juicebox podcast.com. And don't forget to follow us on Instagram Facebook, Tik Tok or wherever you do your socials.
This episode of The Juicebox Podcast is sponsored by Dexcom, makers of the Dexcom G seven dexcom.com forward slash juice box head over there now get all the information you need. Check out that Dexcom right there and those pretty pictures and all those descriptive words and get started. Just click Get Started. When you get to the website dexcom.com forward slash juicebox. When use the links from the podcast, you're supporting the production of the show. And speaking of links, contour next one.com forward slash juicebox learn all about the contour next gen blood glucose meter, its accuracy, its second chance test strips and why it's the meter that we use here. Contour next one.com forward slash juicebox.
Rebecca 2:18
My name is Rebecca and I have had type one diabetes for almost 42 years. And I have a bunch of other autoimmune issues as well.
Scott Benner 2:29
Wait 42 years. How old are you? I'm old. You're at least 42 But
Rebecca 2:35
well I'm yeah, I'm 52. So
Scott Benner 2:40
I'm gonna be 53 This summer Why are you telling me I'm old?
Rebecca 2:43
Oh, yeah.
Well, I mean, it's, yeah, it's halfway there. Maybe
Scott Benner 2:48
what were you nine when you were diagnosed?
Rebecca 2:50
I'm 11 like my birthday is in the fall. So I was like, it was like two days before my 12th birthday. I was diagnosed well,
Scott Benner 2:59
okay, so that's a long time to have diabetes and also in the family have diabetes. No one
Rebecca 3:05
has diabetes. My mom had thyroid disease. My aunt has thyroid disease. My mom's first cousin had type one diabetes and lupus. And yeah, I think there's a lot of, you know, kind of that kind of thing. Yeah.
Scott Benner 3:22
A lot of that kind of thing. Yeah. Okay. Do you have any siblings?
Rebecca 3:27
I have a sister Sister.
Scott Benner 3:29
She have any of this stuff?
Rebecca 3:31
No, she has? Well,
not really sure she has cancer that so oddly. Yeah. Because their own thing.
Scott Benner 3:44
You are the first person that said My sister has cancer and then giggled afterwards.
Rebecca 3:49
It's almost like it's ridiculous. Like, I kind of do feel like my health is ridiculous. And it's just a lot. It's a lot in my family. Yeah. But yeah, my sister has ovarian cancer. So she's dealing with that. But no, I don't think she really has autoimmune stuff. I think there was when she was running, they had some kind of like theory about the attachment points of her attendance and that there was something autoimmune going on with that. But that seems to have died down. I haven't heard anything about that recently.
Scott Benner 4:20
It's funny, isn't it? How health can feel like a, like a bad zombie movie? Yes. Yeah. You're like, you kill all the zombies in the living room, and they opened the door into the dining room, you're like, Oh, we did it. And there's more zombies. Like you gotta be kidding me. And then you get all those zombies and you walk into the kitchen, you know, like, Well, finally, we can add more zombies. It's
Rebecca 4:41
exactly, exactly. Well, I think too, like, once you have diabetes, you're like, oh my god,
this is a lot. This is a lot and like the supplies and the insulin and the CGM and the, you know, exercise and monitoring and then and then like when you get something pellets. In addition, it's like, Are you kidding me?
Scott Benner 5:03
Yeah. What else did you What else did you get? So celiac,
Rebecca 5:08
and then but that wasn't till my adulthood but I actually think I had celiac in my childhood before type one. And I actually think that the celiac not getting found and treated with a diet change to eliminate gluten. I think that that triggered my immune system to then attack my eyelets I have memories of like stomach aches since I was really little
Scott Benner 5:33
your parents know about your stomach aches. Yeah. Yeah. What did they think that they just got a defective kid? Or did they? Yeah, they know. They
Rebecca 5:41
were just like, Here have some relates
Rolaids? Yeah. Like I my dad,
I have memories of like my dad having like Maalox on top of his bureau. And I would just like go in there and take Maalox off the top of his bureau. Did it help? No. I mean, it didn't help but it did sort of like placebo effect help. I guess. I don't know.
Scott Benner 6:02
What part of the country you're from that you just said bureau. Bureau. New England. I was gonna say you're in the northeast, right? Yeah.
Rebecca 6:10
Why do people not St. Jerome?
Scott Benner 6:11
I mean, I'm from Philly. So I know that word, but I bet you there are a lot of people right now who are like does she mean the dresser?
Rebecca 6:19
The dresser Yeah, so So yeah, so So celiac. So I think the celiac was first and then the type one diabetes because the celiac wasn't diagnosed.
Scott Benner 6:35
Okay, no, I take your point. But what else?
Rebecca 6:37
Then when I was 15 I got macro BIOSIS lipolytica. Diabetic Horam.
Scott Benner 6:42
Let's just slow down there first no as one does have a second Rebecca as I turned to the other computer, say again? necro
Rebecca 6:52
necro BIOSIS lipo indica. So it's like lipo indica, diabetic quorum.
I got it. Believe it or not. Yeah, it's just like, really ugly thing that happens with the skin because of diabetes. Oh, the
Scott Benner 7:07
dark skin thing around like your neck and stuff? No, no. This is something different. Hold on.
Rebecca 7:13
It's on my shins. Yeah, it's or if you maybe if you look under NLD and type one diabetes.
Scott Benner 7:20
I'll get in there. Hold on. Yeah. Oh, goodness. You have that?
Rebecca 7:25
Oh, yes. So that developed on my shins.
Scott Benner 7:30
Sorry, I don't know what to say that it looks like the makeup from a zombie movie. Because
Rebecca 7:34
yeah, my shins are really like, striking. Like people do ask me all the time. Like what did you do to your shins? And I'm like, I took nothing. But yeah, so that appeared on my shins when I was 15. So that was the next thing.
Scott Benner 7:50
Do you think I should have like a bell or a song that plays when somebody says something? It's never been said before? Like,
Rebecca 7:56
um, yeah, yeah, there should be a bell.
I don't know. You haven't. No one's ever said necroptosis lipolytica. Diabetic. Oral.
Scott Benner 8:04
No, no, this is a first I'm, I'm enjoying the first right now. I don't even know how to write it down. You're saying and LD will get me there. Okay, yeah, that's immune.
Rebecca 8:15
Yeah, that's autoimmune. And it's the it's the immune system destroying the fat layer of the skin. So yeah, it's really like a cosmetic issue. Mostly. If you slow it down with steroids, then it's just been like, no, it's a little rough to look at.
Scott Benner 8:33
But here's this colored. Is yours. Lumpy, or has yours ever festival opened?
Rebecca 8:38
Yes. So it has like it can get infected. I did. It was like infected at one point in high school.
Scott Benner 8:47
Do you love tall boots?
Rebecca 8:50
I love tall boots. Every fall I'm like it's boots weather.
Scott Benner 8:55
And I'm just gonna jot down here for the title of the episode. I love tall boots. Okay. That's a good episode title. This is horrifying. I'm sorry.
Rebecca 9:05
Yeah, no, it's it is it's horrifying. And it's
and it doesn't there's no research really into anything that can be done and it just sort of, is what it is. It just sort of stays. But that was like the, you know, the next thing and I was 15 So like when you're 15 and
Unknown Speaker 9:21
your girl
Scott Benner 9:24
boy 15 And I'm, I don't know a giraffe. I think anybody would be upset. Can you shave this? Like what? How do you shave your legs there?
Rebecca 9:33
Oh, I don't grow hair. They're like it's Yeah, it looks like so both shins have it and it looks like it looks like a burn. Looks like I was burned. Yeah,
Unknown Speaker 9:43
just your shins? Yeah,
Rebecca 9:46
it's really weird because there's skin right next to the lesions and that skin spine. But like, if you go over a little bit, then there's this whole thing happening.
Scott Benner 9:57
Absolutely. The first time I've ever seen that. It's just Is that just the type one? Yes. You said it pairs diabetes.
Rebecca 10:05
Yeah, it's a type one thing I don't. And it's, it's dermatologic. It's, you can treat it with steroids and they give you like creams to start, but they don't work and they thin the skin. And then the only thing that I found stops, it is injections. So they would inject steroids into the shins themselves the lesions around the border of them to kind of keep them contained.
Scott Benner 10:29
Yeah, it says here the cause of I'm not pronouncing this God, you do it, you were already through it. The cause of
Rebecca 10:33
necro BIOSIS lipolytica. Diabetic quorum
Scott Benner 10:37
is unknown. It is thought it is thought to be linked to blood vessel inflammation related to autoimmune factors, the damage, or this damage is proteins in the skin or college and people with type one are more likely to get it than those with type two. Yeah, okay. Well, what's next?
Rebecca 10:55
Okay, so after that, yeah, so after that, I, I guess I had like a little reprieve. And then I got married, had a baby. And then right after my son was born, my thyroid was attacked by my immune system. I guess that's Hashimotos. But my TSH was 89.
My primary care called me and she's like, this is the highest TSH I've ever seen.
Scott Benner 11:25
Yeah, they should have rang a bell for you to write.
Rebecca 11:28
I wanted the bell. That point. I was like,
Scott Benner 11:30
thank you. And when you started dating, you just started asking guys, but boobs or leg which do you prefer? And then if they said, like, you just went home, or how does?
Rebecca 11:40
Ya know, like I, I've always like, been, you know, like, able to
find boyfriends and, you know, friends and what have you. But I do think that I do kind of, I used to sort of preface things like, well, just wait to see my legs.
Scott Benner 12:01
I have to be honest with you, Rebecca, and I think I can speak for men in general here on this. We're very easy to make happy. No one really cares. It just.
Rebecca 12:10
Yeah, I mean, it's a good litmus test in some ways, because I you know, I waited a few
Scott Benner 12:15
out. Yeah, I bet. Well, that's yeah. Okay, I'm so sorry. After the after you got your 89 TSH, down. What, by the way, how did how did you feel at that point?
Rebecca 12:29
Well, I was postpartum. And I was exhausted. And like, everyone was like, of course, you're exhausted. You just had a baby. And I was like, Yeah, but I feel really not good. Like, I need sleep. And I also still had celiacs that had celiac the whole time I was pregnant. And it wasn't, wasn't discovered yet. So
Scott Benner 12:56
I was that on top of it. Yeah.
Rebecca 12:58
So amazingly, I got through pregnancy, somehow. And he got nutrients. You know, he got whatever nutrients he got. He's actually like healthy and fine, which is amazing.
Scott Benner 13:08
But he has no autoimmune stuff. Here's your son. Well, you
Rebecca 13:11
know, he has eczema, like a little bit of eczema.
But he's otherwise like, completely healthy.
Scott Benner 13:19
Where's his eczema?
Rebecca 13:20
Well, when he was a baby, he had like, behind his knees and his elbows and his hands. Now, it's just like, occasionally with like, the wrong soap. He sort of reacts.
Scott Benner 13:32
May I say? Keep an eye on his TSH? Yeah, yeah. Right, just in case. God, was there something else or just stop after the thyroid?
Rebecca 13:42
Oh, no, there's more. So, um, so thyroid, and I started medication for the thyroid. And then when my son was like, I want to say like, one day, I did talk to my endocrinologist and I was like, Listen, I've had diarrhea for like, 30 years, can we maybe think about what this is like, I was just like, I can't leave the house. And like, I went to grad school in Boston, I knew every bathroom in Boston. So I but after I had my son, it was was almost like my immune system has sort of taken a break during pregnancy and sort of was like, alright, we'll let her have a few months of like normal eating and digestion because the baby and then as soon as he was born, I was back to like, being really sick to my stomach all the time. So finally got the celiac diagnosis after my son was born, and started on a gluten free diet, and I had a ton of like, joint inflammation with the celiac so I had like, you know, taken up like knee supports and wrist supports and stopped driving a stick shift, that kind of thing. Yeah, that kind
Scott Benner 14:48
of, you know how when your knees hurt so bad, you can't drive a stick anymore, right? Yeah, no, really. I
Rebecca 14:54
just was like, I can't do this anymore. My knees and
Scott Benner 14:57
Rebecca most people right now are listening. thinking what is stick shift. Now let's talk about the Dexcom g7. The Dexcom g7 is a small and wearable continuous glucose monitoring system. It sends real time glucose readings to your Dexcom g7 app or the Dexcom receiver, use my link dexcom.com forward slash juicebox. To learn more and get started today, you will be able to effortlessly see your glucose levels and where they're headed. This way, you'll be able to make better decisions about food, insulin and activity. Once you're able to see the impact that those variables have on blood sugar, you'll begin to make more purposeful decisions and have better outcomes. My daughter has been wearing a Dexcom product for so many years. I don't even remember when she started. But today she wears the Dexcom G seven and it is small and easy. And oh my goodness, are you going to love it dexcom.com forward slash juice box you can head there now and click on the button that will get you your free benefits check or just hit that other button that says Get Started. When you use my links, you're supporting the production of the podcast dexcom.com forward slash juicebox. As you heard earlier, this episode of the podcast is sponsored by the contour next gen blood glucose meter. But when you get a contour meter, what you're really getting is their test strips. Contour next test strips feature remarkable accuracy as part of the contour next blood glucose monitoring system. They're the number one branded over the counter test strips, and they of course have Second Chance sampling. Second Chance sampling can help you to avoid wasted strips, contour next one.com forward slash juice box. Near the top of the page you'll see a Buy Now button it's bright yellow. When you click on that, you'll get eight options of places online to buy contour meters and test strips walmart.com Amazon Walgreens CVS Pharmacy Meijer, Kroger target Rite Aid. These are all links you'll find at my link, linker D link links, blink blink, blink blink. I'm just getting head over there. Now, won't you please listen, the contour meters are incredibly accurate. They are simple to use. They're easy to hold, easy to read, and they have a bright light for nighttime testing. Part of me wants to say that the second chance sampling is the biggest deal. But honestly, it's the accuracy. These meters are accurate. And I know a lot of people like to think well I have a CGM. I don't need a meter. You do. You need a meter. You need to be accurate. You deserve it to be accurate contour and x.com forward slash juicebox. Take a look at the contour next gen and the other meters available from contour. We use my links you're supporting the production of the show and helping to keep it free and plentiful. They have no idea what you're talking about. Their cars are going to drive themselves and you're like you remember manual transmissions right. And they're like why? Right? Yeah. At one point when Arden was getting her license, she's like, she chose this like, she's like, I want to get this car and she picked some car from a TV shows like an old car from the 60s. I was like you are not going to enjoy driving a car with drum brakes. And she's like with what I was like, yeah, yeah, no power steering, and the heats not going to work very well. It's definitely not going to have air conditioning. And she's like, what, what now? And I was like, Yeah, cars didn't used to be this great. Right? Yeah. So anyway, okay, so we go back for a second. I've had diarrhea for 30 years. Yeah. So
Rebecca 18:37
I really, I really just sort of like, thought I had a nervous disposition or I thought I had sort of a a nervous kind of stomach. And I, I don't know why I didn't, I think because it had always been I didn't. I didn't really know that you could actually like have the urge to use the bathroom and wait.
Unknown Speaker 19:02
Like, God always been like, oh,
Rebecca 19:04
I have to, I gotta get I gotta get somewhere
Scott Benner 19:06
always very impressed by people who are like, I have to go to the bathroom and you're like, Oh, we'll get you to a bathroom right now. They're like, that's fine. We can go when I get home. Right? But those people were superheroes.
Rebecca 19:17
Yeah, they are. I mean, like, that's that is like,
Scott Benner 19:21
super understand people who walked in the bathroom and came out eight minutes later washing their hands. You're like, oh, wait, what happened? How the poop came out. It all came out in eight minutes. And you washed your hair in eight minutes. Like, like you didn't? You're in there just going like do your God just please let this end and and that's happening to them. That's terrible. That's such a long time.
Rebecca 19:46
Yeah, it's such a long time. I mean, yeah.
Scott Benner 19:49
So what did you when you said this to the doctor? What did they say?
Rebecca 19:54
He will I think I had been reporting often on that I was you know having diarrhea. And poor digestion. And what I felt like was chronic stomach aches. And I think like this was I was 30. This was like in the 2000s. So it was like, Yeah, early 2000s. And he was like, Have we ever tested you for celiac? And I was like, No.
And I just had like a feeling write down that this was going to be a thing.
And then he was like, well try avoiding gluten for a few days. He's like, look it up. You know, there's lots of information out there, look it up, and then try avoiding gluten for a few days. And we'll and if you feel better, it's probably that but then we'll, we'll get a look at your antibodies. And then if your antibodies are positive, we'll do a biopsy of your duodenum. So I was like, Okay, great.
Scott Benner 20:45
That sounds like fun. Thanks. Yeah. Sounds great. So how did they diagnose you then?
Rebecca 20:49
So my antibodies came back. Hi, hi. Hi. And then he said, Well, let's do the, the endoscopic biopsy, and just make sure, you know, and see what kind of condition in your villi are in. So we did that. And right after the endoscopy, the doctor came out was like, Oh, you have celiac? You definitely have celiac. They gave me pictures of my, you know, pictures of all the things and there was 100% atrophy of my small intestine of the villi. Yeah. So that was it was almost like, I felt vindicated in some ways. Like, oh, I knew something was wrong. I always knew something was wrong. Like we weren't catching something. And so So yeah, so got that figured out.
Scott Benner 21:41
Jeez. And now you just eat gluten free? That's how you manage that.
Rebecca 21:45
Yes. But so like, and this is, this is sort of one of my, the things that I think people don't know or don't understand is that type one and celiac together is like its own little slice of hell, because it's, it's just a bad combination. So I think like, diabetes control has always been really hard because of the digestion issues. Like I just haven't had normal digestion. And now that I'm gluten free, I think it's, it's better. I also. So once you this is the thing is like, once you go gluten free, your ability to tolerate gluten goes down. So like where I used to have diarrhea and stomach aches. Now if I get even a little gluten, I'm vomiting. It's terrible. It's like, horrendous. And I think that that's, that's kind of the thing that people don't understand. When when you say to a waiter, or you say to someone who's invited you for dinner, it's like, well, it's this whole environment that you really have to be aware of, to cook in in order to not get me sick. So yeah, so I think the celiac has just been rough and, and food labeling is terrible with with being gluten free. So like there's a million foods out there that are gluten free, but aren't labeled gluten free. So you end up reading a lot of ingredient lists and things like that. So I spend a lot of time trying squinting.
Scott Benner 23:16
They don't tell you that when you get older, right or read anything.
Rebecca 23:20
I know well, like my, my close up vision got that right. When I really like now I really have to read ingredients. It's like I can't you know, I have to pull out
Scott Benner 23:31
the tenders. Kelly and I were at the store the other day, picking out frames for both of us for the glasses we need to read and heard to see in general. I just saw us in a mirror and I was like, Oh my god. World. Yeah, yeah, I was like, yeah, that happened. So we're both shocked. I've never like, you know what I mean? Like, that was a new experience for me, the two of us out like, Hey, she's like, I'm gonna get my contacts and get new frames. And I'm like, Okay, well, I think I have to get my eyes checked because I I'm at the point now where I put my glasses on to use something up close. And I'm like, do these not work? Right? So these aren't right anymore, and I need to get a new prescription and yeah, okay, so that's gotta be it, though. Right? You don't have anything else? Or did you get a Raynaud's or something like that?
Rebecca 24:18
Yeah. So then Reno, Reno. Oh
Scott Benner 24:20
my god. Hold on. Stop a second. You didn't put that in your notes? I just guessed.
Rebecca 24:25
Oh, yeah. Yeah, definitely added that.
Scott Benner 24:29
My God, hold on. I become a soothsayer. Yeah.
Rebecca 24:33
Three notes
in my notes is okay. I mean, it's not a big deal. Like, whatever. I mean, compared to everything else, right notes is like nothing, like keep your hands warm. Keep your feet warm. And I'm a skier. So I put the toe warmers in my boots and I, you know, the three notes is no big deal.
Scott Benner 24:52
Well, only, you know, you have to have the perspective of having diarrhea for 30 years. And then you just go down doesn't matter. I don't even care what color my fingers. Yeah, what do you think of whatever?
Rebecca 25:02
Yeah, that's easy. So yeah,
so there's that. And then, and then I got, I don't know when this happened, but like I have dry eyes, dry mouth, like, I think it's sjogrens. But when I get tested for sjogrens, I, I come up negative, they just got sick a syndrome. And I don't know what that stands for, but it's dry. It's like dry mucosal membranes. And it's, it's, it's hard because it's while I sleep, I have to wake up and put drops in my eyes. So it's, it's, it kind of affects my sleep quality. And, like, if I'm exercising and breathing hard, I have to have water with me. Because it's just really hard to keep my throat from being dry. So that that is a strange thing. But I think a lot of people with auto immune conditions have that sort of dry eyes, dry mouth kind of thing going on. So there's that and then and then more recently, I developed some kind of like histamine intolerance or mast cell activation syndrome, but I that's a whole other thing. And that's, how's that? That's, it's, um, so it's, it's another like, bunch of foods that cause my, my mast cells to I think D granulate. And then you have sort of like this, I was getting these 3am 4am attacks of like, vomiting, vomiting, diarrhea, sweating, flushing, passing out kind of thing.
Scott Benner 26:38
And do you have any idea what brings it on?
Rebecca 26:41
Yeah, so histamines. So food with histamine. So I have figured out that like red wine is out. Tomatoes are out, tomato sauce. And then like anything preserved, so anything that has been sitting out, or has been preserved in anything pickled anything, like anything that's in a can, or in a jar on the shelf is full of histamine. And so like, I can do fish, but I have to know that the fish died like yesterday or today, or I really can't do it. So to avoid these, like histamine things, I I've changed my diet even more to accommodate that.
Scott Benner 27:33
Are you taking some sort of a, I don't know. What do you do? Every day?
Rebecca 27:38
Yeah. There's a bunch of mast cell stabilizers and antihistamines that that helped to treat it. And since I've started the treatment for it, I don't have those attacks anymore. Thank God.
Scott Benner 27:50
Any injectables that help any injectables? Yeah. No, nothing. Okay. Okay, so yeah, generally speaking, what's your I'm just going to ask you a left turn question. What's your outlook on life?
Rebecca 28:06
I'm really like, I try to stay positive. And I try to hope that the like, I'm done, I've got my stuff. Up to
Scott Benner 28:14
seven. Right. So yeah,
Rebecca 28:16
we're not accepting new diagnosis here. And we're good. But I think that my outlook is, is life is hard. Like life, getting through a day is hard, like, eating anywhere is difficult. So I, I feel like there's changes that could happen that would make my life and people with type one and celiacs lives better. But the but the world doesn't realize like a how serious it is when we get gluten and how sick we get and then be how hard it is to know that your food is safe.
Scott Benner 28:50
Gluten is that you're like, of all the things you've listed. Is that your biggest concern
Rebecca 28:56
that? Well, it's not my biggest concern. I mean, I think type one diabetes is is sort of the most serious because it affects every you know, every organ system and it's lifelong. And you know, you're you're doing so much to stay alive with insulin and CGM is and all this. And I think that it's, it's gotten so much easier with the CGM than it ever was. And so for me, I feel like it's, it's, it's something that you can fit the pieces together like you. It's a puzzle and you've got to like, be aware of all the pieces, but it's something you can figure out or you don't figure out and you just correct and move on. But I think that yeah, I think it's something that with education, anybody can figure out it just takes it takes experience. It takes reading and listening and yeah,
Scott Benner 29:45
yeah. How much impact? Like do you work outside of your home?
Rebecca 29:50
Yes. So I am a therapist. I work I'm attached to a primary care practice in the city. because that I live next to and I have a small private group practice. So I do that one day a week, and then I am attached to this primary care practice. It's family medicine, internal medicine, and I'm the behavioral health provider for them. So I do I do that during the day, but you're in an office during the day. So on Thursdays I go in, in person and the rest of the time I see people on telehealth,
Scott Benner 30:28
how does that work? Yeah, for them, do you think it works?
Rebecca 30:31
So during the pandemic, behavioral health became sort of more modern, where we were like, Hey, we can do our job on the computer, though. I think that, you know, the choice has really been over the last few years to sit in an office with your the therapist is masked and the patient is masked. And the therapy world I don't think that's ideal. So, so most of us have been doing telehealth visits. So the patient, you know, we use a HIPAA compliant video link and the patient logs in and, and then it's like, we're sitting in the room together. And I mean, I do some things to try and make the time together as if we were sitting in the office together. But it's a little, it's a little weird, but I've gotten really used to, to helping people to make the best of the time and and make it as private as they can on their end. And yeah,
Scott Benner 31:30
that weirdness is Do you think that's more on you or them? Like, it's not something you're accustomed to? Because you've been doing it for a long time? Not that way. But do you think new people to it think anything of it even
Rebecca 31:40
I don't think patients give it much thought but I think it's because, like having been in the field and worked in the field. So like, if someone is sort of like, like, I've had like a guy sort of like sitting in bed topless with his tattoos and now he starts rolling a joint and I you know that it's all new, like the wild west of therapy where
Scott Benner 32:03
I go, Hey, push.
Rebecca 32:07
Yeah, it was like, Well,
are you rolling a joint right now? He's like, Yeah, like, Oh, we don't really encourage people to use cannabis during sessions. It's not really a good idea.
Scott Benner 32:20
Did he put it down here?
Rebecca 32:22
He was like, really? You care if I smoke this? Yeah, he did. He was like, Okay, I'll wait till later. But so you get you do get like an inside view of like, what your, what your patients or your clients are up to at home and you meet their pets and guinea pigs and
Scott Benner 32:39
rabbits. That kind of helpful for you.
Rebecca 32:42
Yeah, I mean, I love that. I love that piece of it. Like,
I've seen everybody's pets, you know?
Scott Benner 32:48
Yeah, I don't know. I don't know. I just it seems to me that like the knowledge that somebody would, like, while they know you're looking at them, like, say, like, I'm not gonna, like forget even the joint like just, I'm not even giving this my full attention. I'm actually doing other things during this. That That That part's interest.
Rebecca 33:06
Right? Right. Well, I think that there's a lot of that when people start. So I try to kind of set the set the pace as like, this is your time for you. So if you're holding your phone and washing your bathroom mirror while we're talking, that's that's you really not giving yourself the space and the time to sit and talk. So, yeah,
Scott Benner 33:29
all right. That's a that's something if this wasn't your job, if you I don't know had like some nine to five, grind, like where you went to a thing? Like how much do you think? Would this get in your way? All these things? So
Rebecca 33:47
I don't Well, I think that no, but I do think that I do have to bring my food everywhere. My own food I can't count on, you know, the food truck outside understanding my needs. So yeah, I mean, I've had jobs where I went to the office every day, and I did it. But yeah, it takes a lot of planning in terms of food and that kind of thing. And I feel like I feel like there's like the work bag and then there's like the medical supply bag. And then there's like all these rescue medications. If I were to get some gluten or I were to get some histamine reactions, I have like a separate kind of bag for all that stuff.
Scott Benner 34:34
Is the is the question where's Rebecca most commonly followed up with in the bathroom back in the day,
Unknown Speaker 34:44
no, no, I
Rebecca 34:46
don't know. I mean, I think that if anything, my family would say that I always had a stomach ache like I was always lying on the couch or on the floor.
Scott Benner 34:57
Just trying to let it pass. Where does that stomach ache? How I've been on your stomach is it in the lower part upper?
Rebecca 35:02
Um, it's like upper. I mean it's, well, it's intestinal, but it's also like your your stomach itself. And like, I think the small intestine I don't really know, but just the whole thing feels
Scott Benner 35:15
okay, you know, everywhere. But yeah, but yeah. Why did you want to come on the podcast? I
Rebecca 35:23
feel like there's a need for the the world to take the celiac really seriously and the world is getting it wrong. Like if you go to a restaurant they asked you, if you say listen, I've I have celiac and I'm gluten free and I'd like to order fish and steamed broccoli and they'll say allergy or lifestyle?
No, no,
it's autoimmune, but I just say allergy, you know, like, it's, it's serious. It's an allergy, but it's not an allergy. It's autoimmune. It's, um, it's this whole, you know,
Scott Benner 35:56
the lifestyle of question is the inference there is like, so it's not gonna hurt you. You're just trying to avoid it.
Rebecca 36:02
Right? Yeah, I mean, I get they're trying to figure out like, how serious how seriously, do we need to take this but but then that
Scott Benner 36:09
in first, there's levels of how, how well they handle it.
Rebecca 36:13
Right. And I think over time, what I've learned is like, I really just go to like two or three restaurants. And I don't go to the other ones because I just don't, I just don't trust and I've gotten sick so many times from a meal. And like there's no there's no meal that's worth getting sick. You know?
Scott Benner 36:33
Describe that for me. Like you go to a restaurant they give you gluten, you make it out of the restaurant or not even.
Rebecca 36:41
Yeah, so unfortunately, you make it out of the restaurant because like if we got sick, right, then they probably take it a lot more seriously, but it actually takes
Scott Benner 36:50
on the floor. Like gluten in the god.
Rebecca 36:55
I know. I know. Well, they they're like how are you feeling?
Are you okay? And I'm like, Yes, I won't know for hours. Yeah. So I think I had written you when I had just survived like this horrendous night going out for Mexican food and doing my whole spiel with like, I am gluten free. I will order what I am not picky. I just don't want to die. Like I'm not picky. I just want gluten free and they were like, well, we recommend these tacos. And I was like that sounds great. I bet that my husband was like, I don't know. I don't know. They look.
Scott Benner 37:31
They look like gluten. They look loony. Yeah, they looked
Rebecca 37:35
at me, they look like and then I did it. And I was like, oh my god, this is so much. And I was like, This is really
good. If it's gluten free, and he's like, I don't think it's gluten free. And I was like, I I went and got the bartender. I was like, Listen, are you sure this is gluten free?
He goes, I'm gonna go check with the kitchen again. So he came back. He goes, Yes, gluten free. I was like, Okay. And I mean, I had done my whole spiel, I had said to him, I have celiac. I had said to him, it's really serious. I had said to him, I really need gluten free. And if you can't do it, just tell me and I'll order nothing. I will have a glass of wine and just sit here and enjoy my night. But he was like, No, we can help you. We can do gluten free. And then it turned out it was totally not. They were both they were like soft wheat tortilla.
Scott Benner 38:21
They didn't even understand what gluten was.
Rebecca 38:24
No, I don't think so. And they probably thought it was fat
Scott Benner 38:27
free. Or, I mean, you have it all. I've listened. I've had that experience a half a dozen times my life. I'm like, Listen, my daughter has diabetes. She can't or she needs or whatever. And they go Oh, yeah, good. Okay. Yeah. They don't know what they're talking about. No one's talking about, like, so like, the people who know no, and everyone else has no reason to know and therefore, I don't know, like, now they have a name tag on so all of a sudden, Rebecca you're trusting them? You know, three hours now you're gonna bump into this this person at the grocery store, and you'll be like, Why was I listening to him? Right? Yeah, exactly.
Rebecca 39:02
Like, if there isn't like you don't know how educated people are, whether they know how to read ingredients. And like, do they know that barley has gluten in it? I'm
Scott Benner 39:12
gonna go no, no, it's so
Rebecca 39:14
it's hellish. Like, you can't, you can't trust. You can't trust restaurants. I mean, I would love to say you could trust a restaurant, but you can't. And so I go to like two or three different restaurants where I know they know gluten free. And they have like a number of safeguards in place, including a manager always bringing the food to the person who's gluten free and they say this is gluten free. So it's like that. You know, like I always want to hear whoever delivers my food. Here it is and it's gluten free even though I've already said hey, I need gluten free when they bring out the food I still want them to kind of like be like, Hey, this is the gluten free thing. And it has a little allergy flag in it you know that kind of thing? That's nice,
Scott Benner 39:57
like a bell but but more yeah Because, yeah,
Rebecca 40:01
there's like the flag, like you're special. And they and a lot of restaurants will do like a different shaped plate for the gluten free or the allergy. Good idea. Food. Yeah. So that, you know, just another safeguard, but but I just feel like overall like our society and our systems in place with going out to eat and also like hospitals and colleges, they don't, they don't get gluten free, right? They don't. So there's kids in college with, with celiac and getting really sick, because the staff in the kitchen don't understand. There's a lot of ignorance in hospital food prep, like, I worked in hospitals, like I used to work in the emergency room, in the hospital, downtown in the city I lived next to and there was a patient there with type one diabetes in celiac. And he had like this rash all over him, which was the the rash that goes with, with celiac, when you just don't follow the diet and you're eating gluten. So he presented with that, and he had a family member with him. And he had been in the ER for several hours. And one of the things I would do is the behavioral health person is I would ask somebody, like, have you had a meal recently? Are you hungry? Like before we start chatting, you know, would you like a sandwich or something? And I could see that he was he was type one and celiac. And of course, you know, I was like, hey, just by the way.
Scott Benner 41:33
All those things. Yes. Do you need Yeah, yeah.
Rebecca 41:38
No, but I always like if I ever meet somebody with both, I'm like, I love you. Did we just become best friends? Because this is so rare. And it's, you know, it's like its own thing. But, but even so this guy in the emergency room I was. So I got him a tray. And I was I was looking at the tray and it was mashed potatoes. It was some kind of meat and then the mashed potatoes had gravy on them. So he's about to start eating. And I was like, Can I just make a phone call about that gravy? So I called the kitchen and they were like, Oh my God.
Scott Benner 42:11
Yeah, gravy made out of flour that
Rebecca 42:13
gravy. Yeah. So I was like, Don't eat that. That rash isn't gonna get any better if you eat that gravy. No. So we, you know, swapped out the tray and no gravy. But, but that shouldn't happen. And if that were me, if I were the patient, I would be vomiting in two hours. And I would need So Fran and IV fluids. And if my blood sugar were to go low while I'm vomiting then then it's life threatening, you know? Yeah,
Scott Benner 42:39
no, of course. It says here. Celiac disease is a serious genetic autoimmune issue. We know Bob about damages about one in 133 Americans for about 1% of the population has celiac disease. Yeah, except I think it's more. I wonder how many people don't eat gluten and don't realize they don't need it? Yeah, you know, I have
Rebecca 42:57
friends that sort of like, we're like, I, I'm gonna give up gluten because I don't feel well when I eat wheat. And then they they to develop, like sort of an intolerance, you know,
Scott Benner 43:09
after you after you don't have it for a while.
Rebecca 43:11
Right after you don't have it for a while. I think the gut is like, Oh, thank God. Interesting. Yeah.
Scott Benner 43:19
Is there? Is there any? Not that there would be? But is there anything that I'm just I'm just trying to get you to? Uh, no. But is there anything that you can take that helps with it?
Rebecca 43:27
So not digestive enzymes, those don't work? There really isn't? So
Scott Benner 43:35
I didn't, I didn't want people to have the idea that it was like, Oh, I could just take something when I'm eating it.
Rebecca 43:40
Like, yeah, no, there's nothing so like with lactate or lactose intolerance, you know, they have this pill. Now, with with celiac, there is nothing that's going to help except getting it out. And so like if you accidentally ingest it, and you know, you've just ingested it. It's just a waiting game until you explode one direction or the other or both. And then after that, you're you're good to go. I mean, you're not good to go. You're, you feel like you feel like but you have to get it out. And then once it's out, you can, you know, start recovering again. Plus,
Scott Benner 44:15
so beyond stomach pain, is there other stuff like muscle joint soreness, tiredness, is there anything else that comes with it?
Rebecca 44:23
with celiac? I? Well, I mean, my joints got gradually better. It wasn't. It wasn't immediate, and it wasn't. It wasn't actually that dramatic, but when I think back to like how bad my joints were, and now how they are now. They're 1000 times better. You know, like, my knees don't hurt except if I'm hiking. Or, you know, I'm old though.
Scott Benner 44:46
So well. It says here. If you have celiac disease or gluten sensitivity, changing your diet may help either ease arthritis.
Rebecca 44:53
Yeah, I do believe that. I mean, I think I think overall like we in our kind Tree has changed because of the way that the fields and the crops have been treated with. I'm gonna say it wrong, but glyphosate. So I think that, you know, the roundup that is used on fields to kill weeds and insecticides and so forth have changed. Changed wheat and wheat itself is has been changed over time. So I think there's a lot to that as well.
Scott Benner 45:25
What's left to eat.
What's left to eat? Steak
Rebecca 45:29
eggs. I don't say don't read me normally. But I was thinking of adding it back last time. My husband Maybe I'll add red meat back.
Scott Benner 45:37
Go crazy. Rebecca have a steak, right. Yeah,
Rebecca 45:40
I think I might. But I do chicken. I do rice. And we have chickens, actually. So we have eggs from our chickens. So we eat a lot of eggs. And I do dairy. So I love dairy. I eat a lot of yogurt and cheese and eggs.
Scott Benner 45:59
Let me just shift gears here. Yeah, what goes into keeping your own chickens.
Rebecca 46:04
It's really fun. Actually, we did this during the pandemic. So I mean, you know, like, during the pandemic, it was like, the world is very weird. Let's do something to distract ourselves. So we, my son wanted to get chickens. And I was like, Yeah, let's do it. So we got some little hatchlings. And so they have a little coop, and a little chicken run. And yeah, they just sort of bop around and they're cold hardy. So they do fine in the winter. And, and they lay eggs every day. Pretty much.
Scott Benner 46:40
Is that where that movie title came from? Chicken Run? Oh, yeah. Chicken Run. Had no idea. I thought it's because they escaped.
Rebecca 46:47
Yeah, that's their little like space to like, hang out during the day. The run is less secure. Usually, for most people. They have like the place where the chickens can kind of hang out during the day, but at night, they're supposed to go to bed and go up to their coop.
Scott Benner 47:01
I'm just trying to say Rebecca, that chicken run was the double entendre and I didn't realize it. Yeah. Okay, what about what I hear about rats and mice coming to where the chickens live? Is that a problem?
Rebecca 47:14
I suppose it could be. I mean, you have to kind of keep up with like, shoveling the coop and having a way to, you know, you need places to put things where does
Scott Benner 47:24
the poop go? After you clean it up?
Rebecca 47:25
We have a pile? Yeah. Yeah, we have like a place for it. And then yeah, and then over time, it it. it mellows out. And then we use it for fertilizer. So we mix like leaves and, you know, other kinds of organic matter.
Scott Benner 47:43
How often do you call someone in the house? That chicken? That's got it? Oh,
Rebecca 47:47
no. That would be mean to
Scott Benner 47:51
me the chickens? I think it just means like a baby, right? Like chicken. Yeah, but I'm just saying like that has to be in your head. You're always looking at it.
Rebecca 47:59
You know, it's really not.
Scott Benner 48:02
That's fine. How are the eggs more tasty.
Rebecca 48:04
They're different. I think they're a little different. Like they seem a little bit like creamier, I guess I would say. And the yolks are brighter. But we have different kinds of chickens, we don't have all the same breed. So it's kind of cool, because some of the eggs are speckled, and some are more like white and some are brown and some are a little bit bigger and some are a little bit smaller. Are they a daily effort? Uh huh. Yeah, pretty much. I mean, for some, especially during the winters, chickens lay less in the winter.
Scott Benner 48:34
But I mean, you have to interact with them clean water feed stuff like that every day.
Rebecca 48:39
Yeah, but we have like, I mean, there's people that have like automatic water and feed dispensers. And then they actually like, automate the door at night. So once the chickens go up to their little coop area and go to bed, like they sit on a little bar, they just press a button and then the coop door shuts so they can Fancy that. Yeah, like you know, like nest but for
Scott Benner 49:03
once you're all in on these chickens financially. Oh, God,
Rebecca 49:08
I don't know. 1000s Yeah, because the feed like we do organic feed, we supplement it with Omega three flaxseed we do. oyster shell we
Scott Benner 49:20
you know, are the chicken love our chickens gluten free. They are no they're not
Rebecca 49:24
are they are they're not. And the weird thing is like, I was putting straw down because it was snowing and I was just like, oh, we should put some straw down for there. You know, so their feet don't get cold. And I was looking at it. And I was like, Oh, this is this is
wheat. So I you know, put a mask on and then I was I went and got my son. I was like you should do this. I'm not doing it.
Scott Benner 49:48
Oh, look at you just trying to go shove on that chicken. Right? Like no, you know, mommy can't do this one. Sorry. So I'm gonna put let's say, I don't know I'm looking at the chicken run the chickens. I'm gonna say four. A brand just for fun. Okay, and then what? Oh, absolutely. What's a dozen eggs cost? At this point? Five bucks? Six.
Rebecca 50:07
Well, I'm not buying um, so I hear they're really expensive, but I think yeah, like five maybe it's make
Scott Benner 50:12
it. So after you get 800 dozen eggs out of these chickens, you're gonna break even. Yeah. How long do you think that's gonna take? How many? I mean he gets from them a week.
Rebecca 50:26
Oh, it really varies, but we probably are getting right now like five or six every day. Okay. All right, but when they age they they lay less. Fewer.
Scott Benner 50:41
Thank you for saying fewer Hold on a second. Teaching people right? So yeah, we get a couple 1000 eggs a year out of them. Are you the people in the neighborhood who were like, Hey, we have eggs if you need eggs?
Rebecca 50:52
Yeah, we drop them off actually to people's houses like we have extra we dropped them off like the Easter Bunny. Yeah, we like to just, you know, surprise people have some eggs.
Scott Benner 51:03
You're like Peter Cottontail. Yeah, break into their house as though Rebecca you knock on the door. Well,
Rebecca 51:09
we just sort of like leave them on the front steps usually nice. And then they bring the cartons back and sometimes they throw money in the cartons so it's really cute. Or they put like a gift card in the carton. So it's really cute. That's lovely.
Scott Benner 51:21
You're gonna pay No, you weren't gonna pay for these chickens in a decade. No problem.
Rebecca 51:27
No what though? I love them. I love these chickens. Like,
Scott Benner 51:31
my dog hasn't paid me back one red cent. Don't you worry. Nothing right now.
Rebecca 51:36
I have a dog too. And she just like snores and she's Yeah.
Scott Benner 51:40
If those dogs laid an egg once in a while, that'd be alright with me. Anything really? I don't know. After themselves dollar gag learn how to vacuum anything would really be
Rebecca 51:51
right. Right? Yes, they should learn how to vacuum this idea of
Scott Benner 51:55
raising your own chickens. Here's why I'm so interested. You're the third person in a week? Who's brought this up?
Rebecca 52:02
Oh, really? Yeah. Because it's, it's really pretty easy. And then you have like your own food source.
Scott Benner 52:10
You should get chickens that lay like steaks. That'd be amazing.
Rebecca 52:15
Well, I don't know if you know this, but people actually kill their chickens and eat them. But I don't but like some people do.
Scott Benner 52:22
Well, doesn't that defeat the purpose? Again? The eggs from them? Yes, yeah. So you should, you should just walk out there and tell them like, Look, you keep making these eggs. And everything stays good between you and me. And what about what about? Is there an age where they can't produce eggs? You said as they get older? They slow down?
Rebecca 52:41
Yeah, so they do reach an egg? An egg ending?
Scott Benner 52:45
Is that when you rotisserie them?
Rebecca 52:47
No, I would never I just think like I would free range them and a hawk would come along and that would be that you know,
Scott Benner 52:55
eat your chicken then if you ate your chicken. Well,
Rebecca 52:58
I don't want to eat my chicken. I love my chickens. I just think you know, I don't know. I probably just keep feeding them and buying them things and you know waiting free range for them to
Scott Benner 53:08
free range sounds like abandonment in case you're wondering what I heard. I heard like, we'll just leave the door open and whistled. Goodbye. Wait, so wait a minute, how? What age do they slow down?
Rebecca 53:26
I should know. But I don't know. I think probably around like four or five. I'm guessing I think I think that's what I read. But yeah, I think they do slow down and then I think most most egg people just love their chickens and keep them around you know and hope for like a peaceful natural death
Scott Benner 53:46
you know have like a heart attack maybe scattered Right? Or they die in their sleep. But a car accident maybe. So we're just gonna say how much property Do you have?
Rebecca 53:58
I think we have like I think it's like point eight it's
Scott Benner 54:01
almost an acre almost. Okay, so it's not like a crazy amount of property or anything like that.
Rebecca 54:05
No, we have like a wooded portion of our yard so the coop is like in the woods so it's like sheltered a little bit actually not sheltered like a tree fell on our coop, we had to rebuild it.
Scott Benner 54:16
I was looking at the list of autoimmune diseases you have and you said a tree fell on the coop and I thought of course it did.
Rebecca 54:21
Of course it did. I not lucky. I know. This is the thing like, yeah, I don't have good luck
Scott Benner 54:29
with other things you do just maybe not with these things. All right. Okay. Do you ever make you think you're getting other animals? Have you ever, like sat around and said like, we should get just one cow?
Rebecca 54:40
Yes. Well, not cows. Um, no, I don't want cows. But um, but little pygmy goats. I definitely would like some goats. I think goats are like a natural like next step from chickens.
Scott Benner 54:50
Is your property completely fenced in?
Rebecca 54:53
No one actually, we're not even I don't even think we're zoned to have chickens.
Scott Benner 54:59
Don't So I won't tell if you don't tell.
Rebecca 55:03
I thought we were like it was it was the pandemic. I mean, I feel like a few things can kind of just happen. Because
Scott Benner 55:12
Isn't it amazing how many things we say that come from chickens like, like chicken or pecking order, talk of walk, stuff like that. Like there's all this like colloquial raising that comes from like raising animals,
Rebecca 55:27
birds of a feather
flock together, and they totally do. So like, they hang out by species. Like even if they were born in different years, they'll hang out by species. So like, yeah, yeah, they're a little bit like, not intermixed. I don't know.
Whatever that word is. They don't they don't they like to hang out with their people like, Oh, you are. You have red feathers. I have red feathers.
Scott Benner 55:50
A feather flock together? Exactly. They're like that. I'm just saying. Yeah, a lot of lot of things here. Right. Over back. Is there anything we haven't talked about that we should have?
Rebecca 56:04
Well, I mean, I feel like there's a lot of things that could get talked about, but um, for instance, good food labeling, like,
Scott Benner 56:13
Oh, you're pissed about the gluten thing? Yeah. And I hear you. But here's the bigger problem, man, I for a second. Yeah. You can't make people care about something they don't care about. You can't make a company care about something that they'll say, Well, we're not in that business. And you know, like, and if you make me do this, then I'll go out of business. Or I can, you know, go ahead and show me the three people you want me to fire so that I can do the testing? That's, you know, what I mean? Like, it's, everyone's gonna have some sort of a reason why they don't want to, or can't, or have not even thought of doing it. And yeah, and so when you're wanting every 133 people, maybe, how do you? You know, I mean, it would seem to me that the only way to make this happen would be through like government. And I don't know how the hell you do that? Because like, otherwise, you're just you're, you're saying out loud, it would be nice if people would pay attention to what I need. And yeah, I don't know how you get anybody to do that.
Rebecca 57:13
I guess it's more
like, if it's not a big lift to say like, your cream cheese is gluten free, because it is like it naturally is like, Why not just put it's gluten free? I
Scott Benner 57:28
mean, I feel like it's because if you because if you say that it has to be
Rebecca 57:32
right. And I think food companies don't want to be accountable. Right? Like, let's
Scott Benner 57:36
say it's accountability, then if then if one, God knows, I have no idea how cream cheese is made. But if something falls into the cream cheese, and now suddenly, it's not gluten free, and you shoot yourself to death or whatever ends up happening, like something really terrible. Vomiting. Yeah. And something really bad happens to you. And then you go, Oh, I found out later there was cream gluten in my cream cheese. You know, now they're open to liability. That's why That's why they won't say they don't want to be liable for it.
Rebecca 58:04
I mean, no, but I feel like they do need to kind of represent what what is in the package. Like if I, I bought 100%, cacao the other day like cocoa powder. And it said it was 100%. Cacao said ingredients, cocoa. And that was it. But then it had a disclaimer saying it may contain all this other stuff. Yeah, but the title of it was 100% cacao. So is it 100%? Or isn't it? I guess it's not 100%? Because it
could contain all these other things that they're listing like nuts and wheat. Soy? Yeah. Like, what is it?
Scott Benner 58:45
I don't know. But you don't want to get your nuts in the chocolate. Because then yeah, you got it, then all the people that nut allergy have a problem. Right? So you have so so 100% Cocoa is a marketing thing. Yeah, it's not true. Well, it is as long as nothing else got into it. But they're saying, but we don't know what may or may not have got we tried really hard. But there might be this and that.
Rebecca 59:08
But then they might as well just be like, well, it might have staples. I mean, we do you use a stapler?
Scott Benner 59:13
Sure. Don't you think that happens?
Rebecca 59:16
They must write? Of course. 100%.
Scott Benner 59:19
No, but there's a number of red hairs that are allowed. And yeah, yeah, you're worried about something else like this? You know, it's just that's I think that's my point is that there's no way to say for sure. And so most places aren't willing to say it. And the places that are willing to say are in that business, and then they charge you double for the food. Yeah, so if you want the cocoa to be 25 bucks, I guess it could be gluten free. But 132 of other 133 people don't give a crap about that. And that's why it isn't. I mean, that's to me not to be harsh, but like that's the problem, right?
Rebecca 59:54
Yeah, I think it is a problem. I mean, I guess I just think it is food labeling has to be better if they, if they're listing ingredients. They
should. They should know what their ingredients are. Yeah. But I guess it's a lot to ask.
Scott Benner 1:00:10
No. I mean, listen, I don't disagree with you at all. I'm just trying to think of reasons why it doesn't happen. Yeah. And why six gluten free hamburger buns cost $95? Because I'm assuming that that's part of it.
Rebecca 1:00:22
Yeah. You know what, I don't even care about that. I'll pay whatever. I like I'm over it like, Yup. You eight bucks for a loaf of bread? Yes.
Scott Benner 1:00:31
Do it. I mean, honestly, the heart here is that. I mean, how many times a day do you eat? And how many times a day? Do you have to wonder, is this the thing that's gonna make me sick? Right. And that's all right. Yeah,
Rebecca 1:00:44
that's the bummer. And that's, that is the thing is like, we could go out for a nice dinner and hope that it's a nice night, and or it could be a complete disaster will end up in the ER on the IVs. And so Fran, and, you know,
Scott Benner 1:00:59
yeah, no, I mean, I'm not. You realize I'm not. I understand, like, I know what you're saying. And I know, yeah, I just I'm trying to figure out like, why is it that hard? And I, I think that's got to be part of it. I thought what you said was really interesting about how we just changed and how, like, you know, do you have a gluten allergy? I'm sure you do. But like, is that because something's riding on the gluten? And you know, something that's killing? I don't know. Yeah, no idea, something in your body that you need to process gluten?
Rebecca 1:01:31
Well, I think, I mean, just on the wheat thing, like they've taken the germ and the brand out of wheat. And then they fill wheat with like, these synthetic vitamins and minerals. And then they call it we know, so like, we we used to have, like the germ and the brand left in the whole kernel. But that's not the case anymore. With the, you know, the way they produce wheat as a grain. Yeah,
Scott Benner 1:02:02
that's to do some what you were saying with how, and I've heard about this and other places to be. And we just talked about it. Actually, recently, I just did something with a regenerative farmer. And so the the soil is being stripped of nutrients every growing season. 100% Yeah. And there's, there's concern that we only have like, I forget what it is, like 60 More growing seasons, and some soils or stuff like that. And, and the other ones that have already been stripped free, they just they dumped manmade, nutrients into the soil so that something will actually grow. Because if you planted there are places right now, that are farms that if you planted something and didn't subsidize, the soil was something nothing would grow.
Rebecca 1:02:43
Right, exactly. Because it's soil should be like a little ecosystem. And it's no longer that it gets used up. Yeah, it gets used up and nothing healthy can grow.
Scott Benner 1:02:56
Yeah. And then they start adding stuff, and that stuff gets into your food, and then eventually, we all run to the bathroom after we eat.
Rebecca 1:03:03
Yeah. Well, yeah. And I do think like, there's peptides, and we that cause endocrine disruption. So there's, I think we itself is problematic at this point. Crazy. For most people.
Scott Benner 1:03:19
It's crazy. I mean, it's not it makes 100% sense. Like the stuff that you know, food is, you know, how everything goes into our body comes through food, mostly. So it's food and you know, drugs and alcohol. That's pretty much what people put in themselves, right. And so whatever's riding on that is having an impact on you, and then you think of it is just you, but then generationally, things change. And then generationally, there are problems. And before you know it, we know, you know, there's autoimmune issues that run in families, and, you know, even like alcoholism sometimes runs in families. And, you know, who knows how all that? I don't know. But it makes sense to think that it starts somewhere and it builds momentum as you're going. I'm sorry, it sucks. I can't imagine. I mean, honestly, I've tried for an hour to like, put myself in your position of like, every time you get food that you can't be, but I can hear your voice when you're talking about like, you know, I tried to buy cocoa Can I not just be sure it's just cocoa and like there's a real, like, dire sense to what you're saying. And, and most people don't, I mean, most people don't think about that, and don't think they have to but, you know, in the end, we all should care about what's in our food.
Rebecca 1:04:33
And what kind of sucks is like when like even doctors don't kind of help. So if a doctor says I'm going to put you on this antihypertensive medication, and then you take that prescription to the pharmacy, and I'll say to the doctor, like can you write on the prescription must be gluten free. So she well, I'll go to the doctor, you know, making sure that everything is is good to go on. prescription. But then when I get to the pharmacy, the pharmacist, you know, she knows me by name. We're like, best buds at this point. But but she still say, Yep, I know it has to be gluten free. So she'll try and call the manufacturer. And if she can't get ahold of them, she gives me their phone number and I call, but then I call and I'm talking to like this company and their their facility is in India. And to the best of their ability, they'll say, we're pretty sure there's no gluten ingredients, or there is no gluten ingredients in the medicine. But we can't guarantee that it's gluten free because the facility itself isn't India.
Scott Benner 1:05:42
The facility is not gluten free, perhaps.
Rebecca 1:05:45
Yeah. Right. And of course, it's not. And then like, do they have the same standards in that country for for washing? The, the belts between manufacturing, you know, yeah, I don't know, I like I haven't studied that. But but so like, every little medicine change, or anything that normal, normal people do with medicine, and that kind of thing. It it's this huge process.
Scott Benner 1:06:10
And eventually, though, there's a breaking point in everything, which is just, it's just human failings at some point, either somebody doesn't care or doesn't do something correctly, or doesn't, you know, or adult doesn't know or whatever. And eventually, you're gonna have things slip through. Yeah. I mean, honestly, it's terrible. It's just, I just don't know what to do about it. Yeah, you know, I know. So I mean, because what are we talking about here? Like, you know, is every pharma company going to open up a gluten free place where they make their meds? And you don't I mean, like, is, I guess what some of them probably do. Right?
Rebecca 1:06:47
Well, I think that a lot of the producers of medicines are now realizing they can't use wheat sourced fillers. And they've stopped doing that. So I think a lot of medicines used to have like, stabilizers or fillers, and they don't so much anymore. So I don't know, if there's been a change. It kind of seems like there has I mean, just from my own phone calls to these places, being like, um, it's this thyroid medication. Oh,
Scott Benner 1:07:13
yeah. Do you use tiersen? Because of that, sorry, what was that use? tierrasanta. For your thyroid for your T for
Rebecca 1:07:20
No, I just take Synthroid levothyroxine Yeah,
Scott Benner 1:07:24
because I know we get my kids used here. Arden uses tiersen I think. Yeah, both the kids used Harrison because it's like the cleanest form of the medication. Oh, so I'll have to look that up. Good luck getting your insurance to pay for it. Even here this is from the FDA is they're gluten free medications. The vast majority of oral drug products either contain no gluten, or virtually no gluten. So firstly, which means so which is it? Which is it is there might be gluten to them? That's that's what it's gonna be. Is Tylenol gluten free? There's a whole like rabbit hole. You can go down here. Oh, yeah.
Rebecca 1:08:00
Like, you know, ibuprofen like the liquid gels. I had a headache the other day and I was like, oh, did I look this one up? Dammit.
Scott Benner 1:08:09
God, toothpaste. Do you know there's often gluten in toothpaste?
Rebecca 1:08:15
In toothpaste? I'm learning something. I never even thought about toothpaste. Did you
Scott Benner 1:08:19
know there is often gluten in toothpaste? It's because Gluten is a nice sticky protein that helps toothpaste stay well, a paste corn and grain based starches have long been the best way to fix it and stabilize toothpaste. Okay, for most people, this is not a problem that says same little thing at the end, every one. Every one of these days. Yeah, every one of these statements has a sentence at the end. It's like, you know, virtually, or for most people, it's not a problem. But then but maybe that is part of what you're fighting against is that I mean, it's similar with like, type one diabetes, right? Like, why can't you get anybody to take you seriously when you're like, I really need a diet drink. When you get my drink. Make sure it's diet. And they're like, and you say because I have diabetes? And they're like, Yeah, whatever. I don't know what that means. I don't know what that means. I have no idea what you're talking about. But okay, I'll just not go okay. So no, yeah, I'm sorry. Yeah, well, I have the chickens. I know right? I love them. Yeah, you can always just go talk to the chickens if things get overwhelming. Do you think I totally do? Do things get overwhelming?
Rebecca 1:09:26
It is overwhelming. I get overwhelmed like I do. I mean, it's like if I pack for vacation, I'm like, Okay. Like, you know, there's like the diabetes stuff which is enormous. And you know, like I'm on a T slim and like the little like the charging cable like that little charging cable like sometimes I forget to like pull that out of the wall and then I'm like, Oh my God, how much battery do I have? But anyway, so yeah, the diabetes stuff and then like packing my own gluten free stuff and then all the rescue man occasions in case I get sick. And the list of my medications, and you know, it's just it's a lot. I think it's a lot. And I feel like it could be easier if like doctors were educated about the difficulty of finding out about medications being gluten free or not. And it could be different if, you know, the staff that worked in hospital kitchens knew that they were, you know, they were really important in whether somebody gets sick or not. And I feel like, you know, if you're going to produce food, know what's in it. Yeah. Okay.
Unknown Speaker 1:10:32
I know, it's a lot to
Scott Benner 1:10:33
ask. No. I mean, listen, it isn't it isn't. Right. So it, you know, and for anybody who doesn't have whatever problem you're talking, I forget gluten for a second. Like, if we I think what you get stuck with is, is that if we all stood up and made a list of everything that's really important and necessary for us, then, I don't know, would commerce stand still? Would nobody make food? Would everybody go? I mean, if you're gonna put those that many regulations on me, I can't make this. Like, I think that ends up being the bigger problem. And that's why it's up to communities to try to figure their way through things like this and and get chickens. Yeah. And buyers buy yourself a chicken. Right. All right. Rebecca, I appreciate you doing this very much. Thank you. Yeah, this
Rebecca 1:11:17
is fun.
Scott Benner 1:11:18
Did you have a good time? Yeah. Excellent. That's excellent. I got to say COC in the middle too, which was fun, too.
Rebecca 1:11:24
Oh, my God. I didn't hear that.
Scott Benner 1:11:25
I totally. did. I slipped the COC by you. I said cock of the walk. Oh, that's the saying about chickens. Do you want to get a hold on a second? I know. I know. My chicken sayings. Yeah, I mean, there is a lot. It's someone who dominates others within a group is the cock of the walk. Oh, I know what I'm talking about. And that's talking about a chicken a male chicken. Right? Well, that's
Rebecca 1:11:52
a rooster. Yes,
Scott Benner 1:11:54
but what a cock is a rooster? Is that what you just said? Yeah, that's a rooster. Can you just say it for me? Rebecca? No, you don't want to
Rebecca 1:12:04
that's fine. A cock is a rooster.
Scott Benner 1:12:06
Thank you for it's a male chicken. And is a female chicken. No, no, no. Wait. Well, female chickens are females and roosters are not chickens. Holy crap is that they're two different animals.
Rebecca 1:12:20
Well, roosters are chickens, but they're I'm kind of out of my depth here. But I think that like
I think that male chickens are referred to as roosters.
Scott Benner 1:12:30
All right? Do we have to figure this out before we go? Difference between a rooster and a chicken? Oh my god. So many words. There are so many words on this page. A male chicken is a rooster. A female chicken is a hen I have that right. Unlike the female chickens the roosters are known for their cockadoodledoo during dawn. roosters are grown mainly for their meat and fighting really. cockfighting is well known and practical in many parts of the world. Female chickens are new or reared mainly for eggs unlike other chickens are rooster has a thick comb across the flesh on the head. We know that sounds like the rooster combs are more red and prominent than other chickens. Roosters have more stamina and strength than a female chicken. That's odd. Yeah, I guess you want your car to be strong and be able to really, like stand up for a while. Right? A rooster has bright feather colors when compared to chickens. roosters are known to be sociable around humans, but are known to be aggressive among their own kind.
Rebecca 1:13:30
Yeah. Interesting. Totally. That's the pecking order. They're like so mean to each other. Mm hmm. But they do they have I mean, I hate to say this, but like chickens have personalities.
Scott Benner 1:13:42
So do you think the word that is used colloquially for men? gentled is genitals Excuse me? No, no. How come I couldn't pronounce that is from the way the roosters act?
Rebecca 1:13:55
Yeah, I think it's probably like I do I think the roots are probably, you know, when you think about slang, they probably came from right like thinking about the the rooster and like the rooster does certain things like is is very dominant to the to the other chickens and is protective sometimes too.
Scott Benner 1:14:16
I think all this is teaching us is that we let men name roosters. I think that's what's going on here. There's no There's no way a lady came up with this. Like there's no way like a lady was like I'm in charge of giving roosters and other name. I'm gonna call them this. Yeah, I don't think it works that way. No, I don't think so. I think we're all lucky that hens aren't called vaginas. What do you think of that?
Rebecca 1:14:37
Yeah, that's lucky. Lucky.
Scott Benner 1:14:40
Rebecca, when I listened back to this, I think I talked around. I believe I used all like the right words here. Like there's nothing that I haven't said anything dirty here.
Rebecca 1:14:50
Yeah, no, I don't think so. Yeah, yeah. I think you'll have to edit out a few
Scott Benner 1:14:55
CoCs Yes, for sure. Yeah. Oh, isn't that interesting? All right, I'm gonna let you go. Can you hold on for a second? Yeah, thanks. A huge thanks to Rebecca for coming on the show and sharing that fantastic story with us. And we want to thank Dexcom dexcom.com forward slash juicebox. Get yourself a Dexcom G seven, or G six with my link. Let's also think the contour next gen blood glucose meter contour next.com forward slash juicebox. You can get your test strips and your meters all at my link. Those strips may be cheaper in cash than you're paying right now. Through your insurance. Go check it out. Contour next one.com forward slash juicebox. I want to thank you so much for listening remind you to find the private Facebook group click on the links in the show notes when you need the stuff. Support the podcast any way you can. Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast.
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#1046 Whack A Mole
Tziporah has type 1 diabetes and is here to talk about her lumpectomy.
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - Radio Public, Amazon Alexa or wherever they get audio.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends and welcome to episode 1046 of the Juicebox Podcast.
Today I'll be speaking with a returning guest to Bora was on episode 773. It was called Rainbow connection. And since she was on that episode, she's developed breast cancer. She's back today to talk about our lumpectomy and so much more. 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 or becoming bold with insulin. Check out the Pro Tip series that has been newly remastered and is running right now in your audio app between Episode 1001 1026 There's a special ad on there from the contour next gen blood glucose meter that I think you're gonna love. There's a little bit of a offer in there you should go check it out, because it's while supplies last. Go look in the diabetes Pro Tip series that runs between Episode 1001 1026 Also don't forget to check out the private Facebook group Juicebox Podcast type one diabetes
this episode of The Juicebox Podcast is sponsored by cozy Earth. Cozy Earth is where I get all of my most comfortable and lovely things, my sheets, my towels, and some of my most favorite pieces of clothing. They have ladies and men's. Everything you can think of at cosy earth.com And when you use the offer code juice box at checkout you'll save 40% off of your entire order. The podcast is also sponsored today by us med us med.com forward slash juice box. US med is where we get Arden's Dexcom and Omni pod supplies from and they have much more you can get a free benefits check right now at us med.com forward slash juice box or call 888-721-1514 Get your supplies the same way we do from us med
Tziporah 2:24
Good afternoon. My name is suppor Rosenberg and I have type one diabetes for how are you? I'm alright. How are you, Scott?
Scott Benner 2:32
Thank you. I appreciate you coming back on the podcast again.
Tziporah 2:35
Sure. Thanks for having me.
Scott Benner 2:36
Oh, of course. What was your episode number two, you know? Oh, God, you don't just call.
Tziporah 2:43
It was called Rainbow connection.
Scott Benner 2:45
All right, I'll find it. And we are going to dive in pretty quickly to while you're back. But first, we're going to find out a little bit about yourself type one. Type one. How long
Tziporah 2:59
44 For, like 42 years.
Scott Benner 3:04
Was that a trumpet? You were playing there?
Tziporah 3:07
That was my it was my imagination trumpet. It was episode imagination. Trump that
Scott Benner 3:15
was really wonderful. You're like, diabetes for a long time. When you came on the podcast the first time what did we talk about?
Tziporah 3:23
We talked about a lot of things. We talked about health care experience. I teach, you know, physicians and nurse practitioners and all kinds of health care people. We talked about my daughter with another autoimmune condition.
Scott Benner 3:36
But we're we're back on for a very different reason today. Yeah. Okay. So what makes you reach back out? Because you were just on episode 773. Like you said it was called Rainbow connection. And it came out on October 17 2022. And now here we are. March of 20. March of 2023. Recording again, it's really only five months later, not something I normally do. So how did you? How did you get me?
Tziporah 4:01
Well, interestingly, I went to the podcast Facebook page and the podcast homepage looking for episodes where somebody may have talked about this particular experience because I was like, oh, I need to learn what I can learn. And this is the place where I want to begin as it relates to new and interesting health stuff and diabetes. And I didn't really see anything. So I messaged you and I said, Hey, have you ever had somebody on talking about breast cancer?
Scott Benner 4:27
Now when you and I spoke the first time, did you have a diagnosis at that point?
Tziporah 4:32
No, I didn't. Okay, so I think we'd recorded I don't know a number of months prior.
Scott Benner 4:37
Yeah, I'm doing my math probably was April 2022. When we it's it's probably been a little over a year since we recorded the first time. Yeah. So how did you learn that you had breast cancer? I guess like I'm looking for your story about how you diagnose that.
Tziporah 4:50
I am in my early 40s. And you know, I think thanks to diabetes, there's lots of things I do just on the schedule and on the regular or for my diabetes care. So I started with a new primary care doctor, and she's like, Hey, you know, what do you think about a mammogram? And I was like, oh, yeah, I should probably get one of those at some point. But I thought I don't need it until I'm 45. And she's like, No, you really should get it at 40. And I'm like, Well, I can't go back. So I'll just get it now. So I scheduled this mammogram, you know, as just the initial one thinking, whatever, it's no big deal, I have no family history. And I really was expecting this is going to be one of a number of adults health screening things that I just have to do. And it'll be no big deal. So I did that in August of this year, this past year, and several weeks later got a letter that said, wow, there's some things that aren't quite what we would expect to see. And we want you to get some more testing. So honestly, like when I first got that letter, I was like, this doesn't sound bad. I don't know anything about this. But if they were really concerned, maybe somebody would have called me so I'll get to it when I get to it. And a friend of mine was like, please don't wait on that, like that is abnormal, you need to go get more follow up. So I did. And the next visit, I had had a nother mammogram and ultrasound and a biopsy sort of all in one fell swoop. And within days, I get a call from that physician, and she said, Yep, you have an early form of breast cancer, and we need you to find a surgeon.
Scott Benner 6:29
So would this be considered an intervention that you don't think you would have had without, like, you didn't have any of the like a lump or a thickening or discharge that you had? Right. Okay. So without this testing, you won't know about this?
Tziporah 6:46
I mean, I wouldn't have known. I do think some people feel something or notice symptoms, I just didn't have any of that. This was purely a sort of diagnostic screening thing that I'd never had before. And so on the one hand, like, dang, the first time I roll in to get one of these things that turns up abnormal. On the other hand, how amazing is it, that routine screening can pick up something that really could have a huge impact? And without it, I wouldn't have known it, it really could be much worse. Yes.
Scott Benner 7:13
Well, I mean, at your age now and where you thought you I mean, you were thinking, maybe maybe I should start thinking about this and three more years. Right, you would have been dead in three more years.
Tziporah 7:23
Well, I mean, thanks. Yeah.
Scott Benner 7:27
Is that not true? Is it not necessarily true if like, undiagnosed breast cancer won't do that?
Tziporah 7:33
You know, I'm new to the breast cancer scene. But I've learned a lot. I think it depends on lots of features. Like, what kind is it? How quickly is it growing? However normal are the cells? There's a lot of characteristics that sort of describe tumors. And this one, I don't know, what would have happened if I'd waited two more years, it certainly would have been bigger, it would have been a worse diagnosis for sure the treatment would have been worse. I think those things are for sure. True.
Scott Benner 8:00
I'd before I ask you about the surgeon, I just have to want to dive into the psychological part of it a little bit like, you get sent for the initial before that you have no concerns, right? That's just like I'm doing a thing. It's fine. Zero, right? Zero, then you get back the Hey, something's abnormal. You're in your you need a friend to push you a little bit where Where are you right in that space?
Tziporah 8:22
You mean around the being pushed? Yeah. Like, why
Scott Benner 8:24
did you need to be pushed?
Tziporah 8:26
I mean, I think the thing, the report, there's like a point at which stuff is just written in a different language, right. I mean, that's true for someone who's new to diabetes, all the tests and the different things that people are looking for. It's true there too. But this was all super new to me. So I see something that says microcalcifications, and I'm like, well, micro sounds small. I'm sure I'll get to it when I get to it. You know, I think I probably Googled it. And it said, Well, half the time it could be benign and half the time, maybe not. But I thought, well, they're probably just teeny little things. And how terrible could it be? So I my initial response was sort of to make it micro. And I was appreciative that I got pushed to get follow up, because it turns out, it really wasn't a micro problem at all.
Scott Benner 9:16
Yeah, that's interesting. So well, and how did your friend know? What did they have experience?
Tziporah 9:23
I think family history and also maybe like they're in a different place on the continuum of like, when you get an abnormal result letter, just go do the thing. Like don't wait, don't mess around, just go do the thing.
Scott Benner 9:33
Do you think there was any impact on your thinking from having diabetes and being so accustomed to just taking care of your own health?
Tziporah 9:41
I've done a lot of thinking about this, and I'm sure I'll do some more in the course of this conversation. I think I'm really attuned to all kinds of things in my body, like all the things that diabetes could do on it, like visual changes, I'm looking for them. Anything related to my kidneys, my blood sugar I just am so tuned in to so many things. So on the one hand, I like spent way too much thinking about what's happening in my body all the time, right? I didn't have any reason to think that this particular thing would be a thing. So I like went all the way on the other end of the continuum, I think because I was expecting it to be negative or no big deal. I like didn't have anywhere to file worry about it. So typically, I take really good care of myself. And if somebody says, You need to go for more testing, I always go and do the more testing. But I think I just, it was like an outlier. It was brand new, and I thought it can't possibly be breast cancer, because in my family, we don't do cancer, none of us.
Scott Benner 10:42
This is a very new thing for your family, super new. How do you pick a competent surgeon? How do you know how to do that?
Tziporah 10:49
Oh, really? Good question. So I have, you know, in the last podcast I probably mentioned, but I work at one of our local medical centers, I have a lot of colleagues across the medical center who either have heard things or have worked with the surgeons and I just put out feelers to my network. And I said, Who would you recommend? Now the thing that I think is interesting, is that who people would recommend, you know, it's all in the eye of the beholder, right? Like, this person's really good. Well, what does that mean? That they're surgically very good that they have a great bedside manner that they're really smart that they've written a lot of, you know, scholarly papers. But this person's name came up a few times. And I said, Okay, well, I'll reach out and see how quickly she can schedule me. And I got seen, pretty soon, I was really grateful for that.
Scott Benner 11:33
I wonder if people know that doctors get scored by their outcomes. And because of because of that, some of them don't take cases that aren't more slim donkey. And so their scores look great, because they take the ones they know we're gonna work out. That's, that happens. That's the thing.
Tziporah 11:53
It is a thing. Yeah, it is a thing. I don't I don't know whether, like in my first outreach, I was like, Okay, here's all my deets. I think I just said, I've done these steps. And now I need a surgical consult. And, you know, can you see me?
Scott Benner 12:06
My mom, I was just talking to somebody about this yesterday, privately. And I told them, like, my mom is only alive right now. Because Arden has diabetes. And here's the connection. Here's the connection to that. Because I've spent so much time helping Arden navigate through health care. I am not a person who just hears the first thing they hear and goes, Okay, that sounds fine. It's what you said, you're the guy. So, you know, you're the lady who said it, I'll do it. The first surgeon that saw my mom after her cancer diagnosis, told us she's not strong enough for surgery, and said she should go to rehab and then get herself stronger, then we'll do it. I was like, okay, you know, what do I know? That's okay. So my mom goes off to rehab. Now, I did make the argument in the moment I said four days ago, she was fine. Like, you know, like she hasn't deteriorated that much like she was living her life a couple of weeks ago. She's not under some, she hasn't been under some duress forever. I don't know that this is necessarily like launched, take off the cancer, that she needs the PT. So my mom goes off for a month, I think, to a physical therapy rehab center, where she's living every day catheterized with a tumor in her and doing PT to get herself stronger, goes through the whole thing does exactly what they want, makes herself stronger. And she's being booted out of the rehab now, like if you really tried to imagine it's my mom lives by herself. At that point. She's incapable of taking care of herself now because of what's happening. And they're telling us well, her last day of rehab is Monday and I just keep thinking, Oh, well, well, the surgeon is going to do the surgery now. Friday, Saturday, we call the surgeon like, what's going on? Like, when does she go to the hospital? And he's and doesn't call us back? Yeah. And finally, I pinned the guy down and got him on the phone, like, what are you doing? And he goes, Well, I'm not gonna be the one to kill your mom. And I'm like, I'm like, isn't she dying? And he goes, Yeah, but I put her on the table. She's not going to I said to she did everything you said. And I thought to myself, oh my god, he has no intention of helping her. Mm as Oh, and then we were in a panic. We moved my mom back to her apartment. We didn't know what else to do. She's now living by herself. catheterized with a giant tumor in her like have fallen over and clear as day my wife and I are standing outside of our house. And I'm just like thinking and thinking. I'm like, what do we do? What do we do? What do we do? What do we do all my family's frantically looking for doctors to call. And it just occurs to me that my neighbor's son, he became a surgeon. And I called him and he's got he's in his like, mid 20s You know, but he's like our real prodigies at this doctor. He's at this hospital where there's like one opening every five years for this residency and he Got it. And oh my god, so I thought, okay, he must either know somebody or know something, right. So I get him on the phone and he goes off, give me a minute. Contacts a friend from medical school who became an oncology OB asks her, you think your guy would do this? She it's a now it's a friend now. Now I'm in the system. Now behind the scenes, doctors are asking doctors to help me no problem. My mom's got an appointment two days later, sees the guy. He looks at her and says, you know, Bev, listen, if we don't do anything, you're gonna be dead in a couple of months. What do you want to do? And she's like, well, I'd prefer my mom said, I'd like to go down swinging is what she said. And, like, literally, like heat, we moved us out of his office to pre op testing. And she was on his schedule, like four days later. Yeah, and now it's a year and five months later, she's doing great to me, the other guy was gonna let her die. So I don't know how you pick a doctor. 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Tziporah 20:00
It just shouldn't have to be that way. And I know that it is there's so many components of your story with your mother where I say shouldn't have to be that way. You shouldn't have to be waiting and wondering family shouldn't have to read between the lines about like, Are you a good case or not a good case? And I don't mean to throw surgeons under the bus at all. I think there are so many twists and turns to health care and access. It's not even about finding a good fill in the blank. It's like finding an any fill in the blank, who will be able to see me. Yeah, but I do think you're right about what you said about Ardens diabetes, my advocacy for myself, like in health care will always be strong. Yeah. I mean, there's, there's some downsides to that too. But if I had met this surgeon and the first visit, and I was like, No, I'm not, I don't feel this, I don't have a good vibe. I'm not gonna let that person operate on me. But I would know, I could request a second opinion. And I don't know how many people know that. There's a lot of us who just sort of get what we get, we don't get upset. And we are we have to be active and advocate for ourselves in that space.
Scott Benner 21:06
It's interesting to how easily you can feel pressured. And then it'll move you to like inactivity, or to do something you wouldn't normally do. Like, because if I was a regular person, I would have thought, Oh, well, the doctor says My mom's not a candidate for surgery. And we would have sent her to hospice. And instead, I was like, that's not right. Like, that doesn't make sense. Like, I actually thought, Who cares if she dies during the surgery, if she's gonna die two months from now, the risk analysis there doesn't make sense of, you know, now, it's almost like the high and low blood sugar thing. Now, it's just, I was just talking, I was just recording with somebody else. And we went over that idea of like, their doctor was absolutely happy for their agency to be in the nines. And then they found the podcast got their agency into the fives and the doctors yelling at them. You're gonna hurt yourself. Well, the nine a one seat wasn't hurting me. Right? Like fascinating. I was like, I said, Look, I don't want my mom to die next week. But she sounds like she's definitely going to die two months from now. So let's go. You don't mean like do something. And thankfully, she was there for it and, and up for the fight and everything. But was the surgeon who worked with her? Yeah, by the way, there's the the hero is the man who said, Hey, listen, if she dies, at least we tried to help her, instead of protecting his score at the hospital, you know, and I was like, my god like this, and how would anyone know that? Like, how would anyone know that?
Tziporah 22:37
I mean, I think if we set the scores aside for just a second, because that's a whole world that I think is both really sort of interesting and confusing and complex. And I don't know what ton about it. But the other thing that I think is embedded in what you're describing is like, and I think it's one of the premises of your podcast. information allows you to make the best choices. You can,
Unknown Speaker 22:58
it's all you need. Yeah, so
Tziporah 22:59
one surgeon's opinion is one surgeon's opinion, one endocrinologists opinion is one endocrinologists opinion, with diabetes care, this is a long term relationship, hopefully, right? To find somebody that you feel like gets you and sees you and respect you, and also gets and understands the micro details of diabetes such that they can partner with you like that's a good find.
Scott Benner 23:24
It's not easy in time, either. There's a little bit of investment of effort on your part.
Tziporah 23:29
salutely. Yeah, absolutely. Yeah. And then if you take something like cancer, there's fear in the mix, too. You talked about being pressured or feeling pressured, I can think of fewer more vulnerable scary moments than being told on the phone at 447. On a Monday evening by some lady I just met, you have breast cancer. Now you need to go and do all these other things. And on the phone, I'm like, okay, cool. Got it. Thank you so much. So we hang up the phone, and I lost my stuff. But the fear that comes with something new and scary, that feels like it's threatening everything. How could you not feel pressured around the choice of a surgeon around? What do I do next? Who do I talk to, like, the fear and the overwhelm, I think contribute to people feeling backed into a corner and not knowing that they have choices.
Scott Benner 24:18
You know, it's funny, I was talking to somebody recently who was expressing that that's at a lot of the places they're shopping. Now, as they're checking out, the register person spins this screen around to them, where they get to choose if they want to leave a tip or not. And they and the person said, like, this is a scenario where no one's doing anything like this is not a tipping situation. And I was like, right, like this is a cash register person who's ringing something up is the same as been my entire life. They're making a salary. It's not like a white person salary where they're making $2 An hour and they're living on tips. And I was wondering, like, Where does the story going? Because you're really like smart like driven Like, a good solid, like, human being she goes, I give them a tip every time. And I said, Do you want to? And she goes, No. So why are you doing it? Because I don't know, I can't take it. They're looking at me, or there's someone behind me, I don't want them to think I'm a bad person. And I was like, wow, look, it isn't that interesting. It's that easy to reach into that lady's pocket and take $2 from her, you know, and it My point is just that we can all get put into situations, they don't have to be about cancer or health care, where you just, you end up doing the thing you you wouldn't normally do if you weren't being pressured. So
Tziporah 25:36
well, I'll I'll give you another example of like another step down the line on that same thing. You know, I'm an educated person, I spent a lot of time in school, took out a lot of student loans for my degree, I work in health care, I read voraciously about anything. If you told me I've got this rash, I'd be like, Oh, tell me about the characteristics of the rash. And I would look it up and I you know, I just am that kind of person where I'm going to go toward the information. The other thing that I do though, is I asked a bunch of questions. And some of that is a way to help me manage my fear. Some of it is just to do what I said a minute ago to have enough information with which to make the best decision I think I can, and so much of our health care system just doesn't. It's not designed to accommodate that. So I could say to the surgeon in this consultation, okay, well, what about this? And what about that? And what do you suspect that will be like? And if I do that, but I don't do that, what can you tell me, and suddenly, I'm in a visit that probably on her schedule, is more time than she expected to spend? Because I don't want to leave that consultation agreeing to have her cut me open. If I haven't asked all my questions that of course, can go overboard real quick. But even as as educated and experienced as I am in as a health care person, as a teacher, and as a worker, I'm always worried like, who's going to be like, Oh, this lady is too much. Oh, yeah. She asks too many questions. She's She's a pain, like, I don't want to be a pain.
Scott Benner 27:03
Well, especially because people have a way of leaving you when there have been a pain, like, yeah, right.
Tziporah 27:09
So if I have a side effect from from a surgery that like, Oh, I'm worried about this. I'm also worried, are they going to dismiss me as somebody who's just fearful and anxious? Are they going to take me seriously? And I'm not always sure how it goes. Which then means I have to come back and be persistent them.
Scott Benner 27:26
Right. Yeah. I mean, in the end, I think you just have to ask the questions, because their understanding of you, you can't control it all. So you might as well do what you know, is right. And if they're incompatible, then move to someone who is compatible. Yeah. You know, maybe we're spoiled here. But the tie the idea about the timing of the the appointments, I have to be honest, Arden's appointments in her Endo. Are there forever long? Yeah, they go on until we're done. Yep. And no one ever I've never felt rushed in and no appointment ever. But I can tell you that they're 45 minutes late to my appointment, sometimes while we're sitting in the room. Yeah. And so I just tried to sit there and think, Okay, well, right now the doctor is talking to someone else who needs this, and they're going over because of that, and don't be upset about it, you know, just kind of let it be. But I mean, eventually, the end of the day comes somebody's getting screwed at five o'clock, you know? So it really is. I mean, obviously, it's a it's a very well understood problem. The length of time doctors have? Yes, but I don't know what you do. I also don't know. Like I will, I often want to put myself in their position to like, how many of those questions are they just like us doesn't matter? It doesn't matter. It doesn't, you know, but it does matter to you. Because like you said, some of those times, those questions are for your own comfort.
Tziporah 28:54
There was a point in my initial back and forth, I think even before my surgery with the surgeon where I interpreted their response as being like, Okay, now you're asking too many questions. And I said to her, you know, I'm guessing you do this all the time. And this might not look worrisome to you. That's my first rodeo, and I hope to never come back. So, you know, I might have even apologized, I feel embarrassed to say that, but I'm so cognizant of that, like that, you know, eye roll that I wasn't supposed to see, or, you know, something that seems mundane to them. It's everything to me. It's my first time, hopefully my only time but it's scary and big and new. And sometimes when I label that the person on the other end is like okay, of course. Yes, of course. Of course you'd be scared. Of course you have questions. You know, what else do you have? I hope it goes that way. Most of the time. It doesn't always but
Scott Benner 29:49
what it seems like that's a good way to reframe the conversation. So if in fact they're in their own head, and just going like, oh, here we go, here comes the next thing she's going to ask is this It's like to be reminded that I've never you've done this a million times. I've never done this before. Yeah, it's good. It's a good, really good point. Just to remind them, that I'm not everybody. I may. Yep, yeah. Okay, so
Tziporah 30:14
one other thing I'll say about that. There is something like universally human about somebody saying, I'm scared right now. And I don't know very many people where I'm not friends with them anymore. Where somebody said to them, Listen, I'm scared that they wouldn't like pause and back up and be like, okay, sorry, look, let's just sort of slow down. As a patient I don't want to lead with I'm really freaking out right now. I want to look put together and cool and relaxed and all that stuff. But when I'm terrified, you know, if I can label it, sometimes it reminds the other person like, okay, it's too much, it's too fast. Can you just sort of slow down and be gentle? And I do think it's an invitation to humanize
Scott Benner 30:53
the situation? For sure. Yeah. It's funny, as you were saying that, here's my her my my mind jump to, don't they tell you when you're kidnapped to tell the kidnapper like who loves you, and that there are people in your life and what your name is so that you you don't look like a possession to them, but you look like a human being and then hopefully try to make a connection, you really are saying that you're saying, remind the doctor, that you're a person, not a process?
Tziporah 31:21
It's not a disease? Yeah, it's not a cluster of cells.
Scott Benner 31:24
Now, it's such a good idea. And you could also see how they could get in that situation too. Sure. Absolutely. No, absolutely. Listen to I'll share this with you. When I speak to people privately, which I don't do as much as I used to, but I still do it. Sometimes they'll want to get on the phone and tell me this big story about their diabetes that they think is going to illuminate the problem. And then I'm going to figure out the problem. And after a number of conversations like that, what I learned was that their understanding of what's happening is so skewed, that hearing the story is almost not valuable. A lot of the times, so I learned to ask questions. I'm like, I'll say, look, I want to hear your story. But first, let's answer these questions for me. And after they answer the questions, most often I'm able to point them in the right direction. But the story they tell, like, I'm not gonna lie, there have been moments where I'm on the phone, I'm like, I don't even know if I need to be here. You know what I mean? And and so I wonder how often doctors feel that way. Like, oh, they're gonna say this and then this and then this and then they'll go to this and then they're gonna cry, and then this is gonna happen. And we're all still gonna end up in the in the operating room anyway, wonder if that doesn't happen. You know?
Tziporah 32:37
It. I mean, it's got to at least some of the time and I'm like you I can't fault you know that the people are the times when it does happen, because there are so many of us who need whatever is the thing a surgeon and oncologist, an endocrinologist, so I do part of me gets that. Yeah. But then when I'm in the room, it's like that. That rack could do funhouse mirror thing where I'm like, I, I just feel like I need to be the only one in the world right now.
Scott Benner 33:03
Yeah, and nothing wrong with it. Right? I mean, even if you want to just look at it from a business model, you're paying, you know, so do the thing if they
Tziporah 33:12
can catch me out.
Scott Benner 33:16
You haven't paid for that surgery yet.
Tziporah 33:18
I mean, health insurance is a good thing. I'm very fortunate to have it.
Scott Benner 33:21
It's a good point. What was your out of pocket for the surgery? So
Tziporah 33:25
I this is gonna sound super twisted. I play a game every year with my health insurance where I have a high deductible plan. But the and I every year I'm like, how quickly can I meet it? diabetes is quite costly. So if I fill all my supplies at the start of the year, I'm out a couple grand between that and other stuff with my family then I'm like cool. Now I'm in my my regular coinsurance frame of mine. It happened to be that last year I had the surgery in November and actually had a second one in December. I'd already met my out of pocket maximum. So cost to me was zero. Wow. But it was only because I was already out 1000s and 1000s of dollars from the the workup MRI biopsy, mammograms
Scott Benner 34:07
we had that year every once in a while cyclically it all just sort of like hits at the same time and all of Arden supplies are due in January. Now but at the end of January or like dizzy, I said to Kelly um, I think I spent I think it's nearly $2,000 this month. And she's like how I'm like she did her CGM was right away she needed this right away that right away and there was none of the copay had been met. So I was like, Oh, holy hell, in the end, it doesn't matter. You're gonna pay the two grand at some point. But it when it all happens at once it's it's it's off putting but it's helped you because then it doesn't know you're just spreading the money around in different places reading it spreading it out. Yeah. So you find the surgeon and you how long from when you say okay, I'm going to use the surgeon. Do you have an appointment for the surgery? a month. i That's I want to About that month.
Tziporah 35:01
Yep. So I'm not a surgeon, I'm not an oncologist. I'm not I'm not, you know, my experience is my own. That's all I know. But I leave the appointment. And the scheduler says, Okay, well, here's your date. And I'm like, okay, great. And part of me is like, oh, that's soon. And then I leave and go home. And I'm like, Oh, my God, that's like a month away. What am I going to do for a month? What must she think about what she knows so far that she's willing to let this thing sit in here for a month? Does it mean that it's not worrisome to her? Does it mean it's not dangerous? Does it mean she doesn't think something terrible is gonna happen in a month? If it was really bad? would she say come in next week? So there was a lot of sort of, like, mental math, but like, they were all variables? Because I didn't actually know for sure. Yeah. All I knew was, there's my date. And I'm like, Okay, well, I'm gonna get ready.
Scott Benner 35:55
Well, here's the worst part. What if it's really bad, but I only do three surgeries a day, and there's 90 people ahead of you. So you have to wait a month?
Tziporah 36:02
I mean, that would have been terrible to, you know, I would hope that if it was bad that this person would have said, Listen, this really needs to be operated on sooner. I'm going to refer you to a colleague like I think most people would do that. I'm guessing that the initial diagnostics, like the biopsy and the MRI, were reassuring enough that this is a relatively small, relatively contained, shouldn't be that terrible a month is going to be Okay, gotcha.
Scott Benner 36:29
So, psychologically that month, are you? Are you worried the whole time?
Tziporah 36:36
I think I had a mix of like, cool, no problem, because in a month, this thing's going to be out. And I'm going to be good to go. And terror because my experience was surgery is like not that much. I had a baby that came out surgically. And that's pretty much all I've had. So I had tell her about the surgery, worry about anesthesia, worry about my blood sugar, worry about what's growing? And how bad is it going to be by the time she gets there? And can I really trust these people? But then also, like, I have a job and I have a kid and I have other stuff to do. So I'm just going to try to ignore it until I get closer. I would say the worst of it was probably like the week before the surgery.
Scott Benner 37:15
How did you manage your blood sugar? Did you talk to the surgeon about like, did you leave your CGM on your
Tziporah 37:21
left on the CGM, I left on the pump. And, you know, there's been a couple of posts in the last several weeks about what do I do for these surgeries. The good news is, you know, my surgery was relatively short. The case was not scheduled for a long time. But she basically said you'll need to talk to anesthesia about it. That's not up to me, which I think is not uncommon. The anesthesia team who's managing that stuff in the moment, I think really got the say so at least as it relates to my case, so I had a, you know, a pregame call with the anesthesia nurse to say, Listen, I'm coming in with this. I've already talked with my endocrinologist, I'm gonna set activity mode several hours prior to my arrival time, I know I'll be NPO. But I'm going to aim to be in this range. And so I will, like fed them all this stuff. I'm like, I'm going to be good to go. Don't worry about me. And by the time the anesthesiologist came around, they were like, okay, cool. No problem.
Scott Benner 38:10
Yeah, because you understood what you need to do. Better than they did. Probably yeah, right. That the anesthesiologist was probably like, oh, this lady's got this.
Tziporah 38:21
Thank God because I don't really want to worry about it. She's got it. Cool
Scott Benner 38:24
day before Did you worry about that? Right? There's a time you can eat after midnight. Did you think what if? What if my blood sugar gets low?
Tziporah 38:30
Well, the guidance I got from the surgeon was if you get low, you can do clears like apple juice. And I'm like, okay, that's probably not exactly how I would treat alone. You know, I, I can't eat anything else. There's, you know, that's gonna get me to spike, quickly, potentially. And let's say you have three thimbles, full of apple juice or whatever. I knew I could do that if I needed to. And I didn't end up needing to, which was sort of amazing with all the stress that was on board, but things were really stable.
Scott Benner 38:58
Yeah, that's excellent. Are you using an algorithm?
Tziporah 39:02
I use Control IQ. Okay.
Scott Benner 39:06
Did you eat differently in the lead up to the days before? Did you like go with more lower carb items? So you weren't using a lot of insulin? Did you give it any kind of thought like that?
Tziporah 39:16
I feel like maybe I should have talked to you. I feel like I ate junk before because I'm like, what if I don't come out of surgery?
Scott Benner 39:22
I gotta get a Ring ding and before
Tziporah 39:24
this thing I got I gotta hit the drive thru before I go under anesthesia. I don't I don't remember making modifications. And I certainly didn't get guidance from it from anybody else. The only stuff I got was really about you know, not taking anything by mouth after midnight except for clears and occurrence guidance about you know, the activity mode, but I didn't really get anything else in terms of ways to keep things really stable for the couple of days prior I left I
Scott Benner 39:50
got an image in my mind of your car full of like fast food takeout bags and candy wrappers and you're like if I'm going out. This is how I'm going to go home. Yeah, one more milky way dark before this is over. Alright, so the surgery itself, I mean, it sounds like it ended up being no issue.
Tziporah 40:10
It was no issue from a diabetes perspective, it was very smooth sailing. It was a short duration, you know, I got up, you know, I came out of anesthesia easily no problem, tested my blood sugar, you know, they always want you to use their meters. And I was like, Really though, so they take out this thing that's like the size of a briefcase, and they're like, this is our hospital glucometer. I'm like, okay, so everything was fine. I went home, and I slept the rest of the day, basically, you know, not a lot of appetite. But the nice thing about algorithm is that it didn't matter too much, you know, things stayed really stable, because I just had basil on Boy,
Scott Benner 40:45
I wish I wish people knew more people knew that if you have good settings on an algorithm, you can fast for so long without needing food. I don't know a ton about this procedure. Is that a lumpectomy that you had? This was a lumpectomy? Yep. Okay. And what's the prognosis afterwards? What do they say?
Tziporah 41:05
Well, I mean, it sort of depends on lots of things. So after a cancer, tumor removal, something like that's a lumpectomy. All of that gets sent to a pathologist to review it and to analyze what they take out to make sure it's what they thought it was. And if it's something else to sort of, describe the characteristics to, you know, to say, what should happen next. So aside from the week before the surgery, the worst was probably the three weeks after the surgery where it was just like an abyss of there's going to be more treatment. But we don't know exactly what we got to wait for these results. And they just took forever, it felt like forever. So by the time I finally got the report, it came to me through my electronic chart, you know, I don't know how many people have that electronic health record. But I get a notification on my email that says you have new results. I'm like, sweet, so I pop in there figuring I'm just going to read. Yep, this is exactly how they said it was going to be. And that's like reading something and clicking on I mean, like it was all some other language that I didn't understand. But I zero in on. Okay, what's this marker? And what's this receptor? And what does that mean? And how much of that and why does this say, invasive? And what does that mean? And the punch line is that there was infiltration that they didn't expect, it had sort of moved to an area that they didn't expect, based on the imaging, I did think to myself to this happen in the month that I was waiting, but you know, I can't really spend too much time there. Because by the time I got to surgery, it was what it was, you know, their initial thought about what the cancer was evolved based on those results. And then they said, Well, now that we know that there's evidence of invasive disease here, we want to get some more information, we want to biopsy your lymph nodes, and we want to take some more tissue from around the initial site. So I had a second lumpectomy and a lymph node biopsy a month later. Oh, my gosh.
Scott Benner 43:01
Is there an indication that this is I mean, what is that? This is the end conversation? Or do you have to get anything prior? Is there any medications chemotherapy afterwards, they start talking about, like taking your breasts or anything like that? Or is it just we'll do this?
Tziporah 43:18
Really good questions? Yeah. So like, at the initial, you know, I'm meeting with a surgeon. So to rewind the table of it, I'm sitting with the surgeon, she says, Listen, this is what we think you have, we think this is contained in the duct, like in the milk duct. You know, you could choose anything from a lumpectomy to a bilateral mastectomy. And I'm like, why would anybody do that? And there are good reasons why people would do that. If they have a family history, if they're concerned about it coming back, you know, I mean, I'm concerned about it coming back. But if there are other risk factors, they might say, Listen, just take them both, because I don't really want to deal with this. I'm so scared, just take them. And that's a reasonable choice, even for relatively contained disease. But I was like, I feel pretty attached to these. I would like to keep them. So let's just take out the lump, and we'll go from there. So when the results came back, she said, Okay, well, we now need to make sure it hasn't spread other places. The lymph node is going to give us information about that. Because if the lymph nodes have picked up some of these cancer cells, that's what makes it makes risk for it to go elsewhere in your body and to have, you know, metastasis. So I'm like, Okay, well, let's get this lymph node out and figure out what's going on. Because by that, I mean, by that time, I'm terrified. I'm like, Okay, what if, what if the fact that I keep forgetting what to pack for my kids lunches because I actually have a brain tumor? Or what if that ache in my back is actually some other tumor or what if my exhaustion is not just the fact that I just had surgery, but it's because I have some other kind of cancer. So then my wheels start turning. By the time the second surgery was done, the lymph nodes came back negative which is super reassuring. But if they'd been positive, I would have been in for a course of chemotherapy. I knew I was going to get radiation either way. And then I'm going to be I had just started on a, an oral medication that basically blocks, estrogen receptors that's supposed to reduce the risk of this thing coming back.
Scott Benner 45:21
Okay, and how long has it been now since that they looked at the lymph node?
Tziporah 45:25
So that was December 9, it's been four months, three months? Yeah.
Scott Benner 45:30
Yeah. Three, wait, January, February, three months? When's the next time you see the doctor?
Tziporah 45:38
I see. I mean, now I've now I will see a whole bunch of people, I had several weeks of radiation. So I saw somebody every day. I'll see the surgeon again later this month, I'll see medical oncology who's managing the medicines. I'll see radiation oncology again in several months. So I think I'm going to be seeing somebody from someone in the team probably every three months for the foreseeable future, maybe a couple of years.
Scott Benner 46:02
And that that's the plan, keep going back checking up. And then eventually, will they? How long does that have to go on before? Before they say okay, you don't have to see us this frequently. And
Tziporah 46:12
I think a year or two plus, you know, follow up mammograms every six months.
Scott Benner 46:17
How do you feel right now, like about where things are? Do you feel comfortable? Or is it? Are you off kilter?
Tziporah 46:24
I feel comfortable enough. It's really a relief. I mean, radiation was every day for weeks. So you know, working a full day running in getting my treatment coming home managing my kid, like it was like a big chunk of my life for not very long, but it felt very invasive, I guess, for lack of a better way. I'm worried about the medication. I'm worried about the impact on my diabetes, frankly, I'm worried about the side effects, but energetically like I feel pretty good.
Scott Benner 46:57
Yeah. What are some of the medication impacts you're worried about?
Tziporah 47:00
Well, this medication blocks estrogen receptors. And so some people develop symptoms that are like menopause. There's like a whole list of those. None of them sound good to me. There's gi side effect potential. So the physician was really good. I said, Listen, I'm kind of worried about this medication. And she said, most of the side effects that people have most of the time are annoying, but tolerable. They always think it's interesting when a physician says tolerable, because to you. So knowing but tolerable, but some other ones include like blood clots, like oh, that doesn't sound good. Which I don't know how I'm going to know. I've never wondered if I had a blood clot,
Scott Benner 47:43
you'll have a heart attack. That's I don't know.
Tziporah 47:46
And then will it be because of the medication or because of diabetes? Like no, thanks.
Scott Benner 47:50
I say I searched it is interesting. I mean, I don't know what else they would say. You don't I mean, but the the idea of like, Don't worry, it'll be tolerable. What does that mean?
Tziporah 48:02
Like? So it's going to be more tolerable than getting breast cancer again, on that side?
Scott Benner 48:06
I think that's what they're saying. Yeah. It's not it's not the other alternative. So any feeling of you have to be kidding me? I have type one diabetes, and getting cancer too.
Tziporah 48:19
Okay, here's like the real real. I, someday I'm going to write a book. And I'm going to call it like the short straw, which is funny, because I'm also short. I know, we talked about that on the first recording, but let's bring it up this. Somebody Thank you. Somebody throws the short straw. And I'm like, can somebody else please draw it? Like, why did
Scott Benner 48:39
we do this draw away? Why does any of us draw this? Or why
Tziporah 48:42
are we struck like this? Is there like a certain number of people that have to get extra BS things for their health? And like, why does it have to be me? So I definitely have that. Like, why me? I also have like, Okay, well, there isn't like a certain number of people who are going to get it and you know, I'm just I'm unlucky. I think it's like, I am pretty well equipped. Honestly. I'm equipped because I have experience with chronic illness. I'm equipped because I know how to navigate healthcare. I'm equipped because I have family support. I'm equipped because I have health insurance like I, I have the I have pretty good stuff to be able to navigate unlucky. And I really wish I didn't have it. I really hope I don't get it again, or something worse. And I've grown up with diabetes. Like I'm looking at all these parents, with kids with new diagnosis who are so scared about so many things. And I think you know what, these kids are going to do great if they use all the technologies and they have all the support and they know how much you're you're invested in them. I've heard diabetes a long time. I've never had a fantasy that my life was going to be without complication on the health side. I just didn't expect it was going to be this I think it's
Scott Benner 49:55
it's interesting because what you just said I believe in 1,000,000% Like, you know the technologies Better understanding is better people understand how to use insulin better understand nutrition more, if you don't, you can get education from a lot of different places. And yet, if you said that to me, and my kid was newly diagnosed, I think, yeah, but somebody, it's going to go wrong for somebody. Is it going to be me? Is it going to be her? It? You know, it could be and then that's enough of the unknown, to not allow you to accept the fact that overwhelmingly, you're probably going to be okay. Yeah, you know, that sucks. Because there's no way to just, and here's the secret for people who want the secret gift to do everything that you can do, and then believe that it's going to be okay. And then if it's not, do everything that you can do, and then as soon as you're done, believe it's going to be okay. And that, that pacing, not just big picture. But the truth is that that's the same frame of mind I use around correcting like, blood sugar, you know, like, there'll be times is an example, there'll be a time when I see a number, and I'm like, we have to correct that we correct it, and everything works out the way we expect. And then one time you crack that same number you end up below. Yep, you can't say, Well, we did this four times. And one time, a low came, so we'll never do it again, you actually have to think the opposite about it. Like I did this four times, and three times it worked out exactly the way I expected it to. And that's our goal. And that's hard. I can tell you, from my perspective, like pulling that trigger, you know, two o'clock in the morning, and you're like, this needs insulin. And you think, but I don't want her to get low. But I have to be willing to see the low, because this is the right thing to do. You make yourself crazy if you live in the uncertainty of it. So you just say I'm doing the right thing. And you continue to do the right thing.
Tziporah 51:53
I mean, earlier you talked about sometimes in fear, people get paralyzed, right? Like that scenario that you're raising now is the same kind of thing. You just have to do the next right thing as best you can, right. And then if you come to learn later, with new information, oh, maybe that wasn't the right thing, then you manage the next moment with the same thinking, like, I just got to do the best thing that I know how to do right now. And it's true here, too. It's true with diabetes all the time. But it's true here, too. My fear was not going to keep me from getting surgery or having radiation or swallowing this pill. Yeah. But if I come to learn, oh, well, that wasn't right. Or now there's new information, I'll take the new information and then do the rightest. Next thing than
Scott Benner 52:36
the best example it because of the lack of oxygen, and the speed and, and the force that it takes to put a person into space. It's a perfect example for this. Because we've shot people, humanity has shot people in the space. However many times they've done it, and overwhelmingly the those people have come back. Some people died at launch. Some people didn't get off the launch pad, some people got up into the sky, but never made it to space. Some people got out into space, but couldn't make it home. But overwhelmingly, most of them came back. And they all did the same thing. They did the next most important they kept making the next most important decision. And and that's what that's what healthcare is. That's what life is you. You don't you just keep making the best decision available to you. And even if it's a chess game, like ever, you don't ever see, somebody will lay over their queen and give up right? That can they'll say, well, in five moves, I was done. I would have played out the five moves. Yeah. And I think of it that way, like just keep going. Because because the odds are, you're gonna play right till the end of the game. And so there's just no value in throwing your hands up and giving up or saying, I'm not going to do you know, I'm going to take a big risk here, when I know this next good. I don't know, I don't know if that makes sense. But you just I think of life as like, I'm in a tin can and there's no atmosphere around me. And I just keep making the decisions that keep me alive.
Tziporah 54:15
So well. I mean, it sounds like you're taking a play out of your mom's playbook. You want to go down swinging?
Scott Benner 54:21
That playbook. I gave that to my mom. So sorry, I'm trying to
Tziporah 54:25
like give props to your mom. And I think I definitely am the kind of person who wants to know the end, right? I don't mean like, oh, how am I going to die? Or when what I mean is, I want to know, what's the endpoint of this thing. So if I do this, then what happens and then what happens next? I want the map right? And in so many ways, that's about like, having a feeling of power or control to help manage fear, but there's so much stuff that you can't know in advance. So the amount of trust that I have to put in somebody else like a surgeon or medical and call Just for whoever to say, Okay, well, we think, you know, the odds are really good that this is going to end up, okay. And I'm like, okay, but I want to know how this story ends. In fact, when I wrote to you, you and I joked a little bit, and I was like, Oh, maybe I shouldn't record this until I know there's a happy ending. Because like, I'm not at the end of the road with it. Yeah, right. And even as I got ready to sit down to data record, I thought, Okay, well, what am I going to focus on? What am I talking about? Because this isn't really done, right? And nobody's going to come out and be like, Okay, here's the point at which we think there's cure, because there's already evidence that my body is doing wackadoo things. So this particular thing this Whack a Mole situation could be over with for now. But like, be vigilant. So if I can't have the map, if I can be in control of what's going to happen next, the only thing I have left is to do the next thing as right as I can, right.
Scott Benner 55:54
And fold it into that is keep living your life the same way to you have children and you know, you have your you're married, you have like there's a life here, like just you keep doing the things with the intention of making it till the end. I don't know if it's, it's just the cancer that that speeds up the idea in people's heads. This is what life is you're just experiencing it now on a what feels like a faster timetable, even though that's very well may not even be true. Being able to see the having the feeling that you see what happens at the end, it gives you that feeling like it's coming, it's coming, it's coming. But we don't think about that day to day, like there's some listen that someone's listening right now, who 25 years from now is gonna get hit by a car and killed. Oh, it's true. And so like, but that person will never live their life as if that's going to happen. If they did, that would be insane. And so you don't have to think about it, because it's not real. But it doesn't mean it's not going to happen. And you're forced into a situation where it it's very real, and it feels like it could very well happen. And the secret, I guess the conundrum is how do I take the next step? Imagining No, this is not going to be what happens? Because it doesn't matter. It's all in your eye. This sounds crazy. It's all in your head. Like it's worrying about. I mean, what is it? I said on that podcast? One time, I worry is a waste of imagination, right? But the problem is that this point, you're not just in a worry situation, like there's real things happening in front of you. Yeah. And so how do you find the balance?
Tziporah 57:36
Well, I'll tell you what, you know, I I've had diabetes a long time. And if you were to have asked me prior to all this cancer stuff, like what's going to be the thing? I mean, it's morbid, right? Who would sit down at a party and ask me this, like, how do you think you're going to die, but I would have said, there's going to be some complication, you know, a cardiovascular thing, something's going to happen, because I will have had diabetes for a long time, no matter when the end of the road is for me, the thing that was hardest has been hardest, so far about this thing with breast cancer is that I didn't see it coming. Anything related to diabetes. If I go and see a cardiologist and they say, Hey, listen, you know, I really see evidence of diabetes in your large vessels. I will be like, Yep, okay, I knew that was coming. Because I've had diabetes almost my whole life. Hopefully not. Hopefully, that won't ever happen. But like, I almost could have expected Oh, it could be something like that. I don't want to be blindsided. So this thing about, like, none of us can script how anything goes really, there's so much variability and so much that's out of our control. But I back to an earlier point you made like, I have enjoyed the feeling of like, Oh, I got diabetes. I know what to do with this every day for as best as I can do for as long as I'm going to do it to prevent those catastrophic things from happening. And even if there is a complication, I know how to handle it. I know who I would see, I know what I would do. I'm gonna get the best treatment I know how to ask for. It's just that I didn't see this coming. Yeah. So in that like blindsided feeling I'm like, someone better give me a freakin map because I do not like this ride.
Scott Benner 59:08
So because that map doesn't really exist. What does that what do you think you're gonna do?
Tziporah 59:13
I'm gonna do the next thing, right? Like, I'm gonna go to all my appointments. I'm gonna go for my surveillance and my follow up scans. I'm gonna take this pill every day, even if I have hot flashes. I'm gonna keep managing diabetes, I'm gonna whack them all the other stuff that pops up. You know, I have not I've not really walked up to like, is there some big life thing that I want to do differently now that I have felt like there was some threat like once the pathology came back in? I went into this like rabbit hole of like, oh my god, I'm going to leave my daughter without a mother. And whether that was based on reality or not, I was so terrified by what I read. But the only thing I did differently with that was like probably hug her a little bit longer. You know,
Scott Benner 1:00:01
is it because you don't want to make her upset? Is it because you don't I have this thing where my son left a couple of months ago to take a job. Once or twice a day, it occurs to me to tell him that I miss him. And I don't, because I don't want him to worry about me. Right? And at the same time, then I think, but I don't want him to think I don't miss him. And it feels like oh, it's like, it feels like a carousel, I don't know when to jump off of, you know what I mean? So I acted like an adult, and I waited a certain amount of time. And, you know, so that I didn't look like a lunatic who was like, I miss you, like, you know, cuz I don't feel that way. I just miss him, I miss him being here. And I just took the opportunity a couple of months after he's gone, and actually just sent a text because I figured, like, that's how they talk to each other. Like, if I'm gonna get on the phone with him, or look him in the eye and be like, I miss you, buddy. He's gonna be like, Well, what's happening? Like, are you dying? You know? So I just sent a text to both the kids at the same time. And I said, Hey, guys, I want you to know that I miss you. And I'm very proud of both of you. But I want you to know that we're okay here. Like, just because we miss you doesn't mean mom and I aren't alright. And it just, you know, I'm happy for what you guys are doing. And, and I just, instead of wondering what one small sentence would do, I just gave the whole thing to him. You know, I was like, let him know exactly how I feel. Not just a piece of it. But the entire thing. I don't want to just be telling you, I miss you, I'm afraid it'll, it'll make you feel bad. And I don't want you to feel bad, I want you to be doing what you're doing. And I imagine that you get that same situation, like you probably, there's probably part of you that just wants to like grab everybody put everybody on a loveseat and just sit there. You know, and you can't do that. Because it's bad for them. It's bad for you. And it's, you know, and very well might not be necessary. I have another question. Answer that then is my other question.
Tziporah 1:01:57
My daughter is 12. And, you know, this, like, I I'm gonna leave her mother listening like I, my game face with her was, everything's gonna be fine. This is all going to be fine. I'm gonna go get this surgery, everything's gonna be fine. I'm gonna have another surgery, everything's gonna be fine. I'm gonna get radiation and everything's gonna be fine. I'm going to take this medication. And some part of me has to believe it enough to tell her right, because I really can't, like I can't for her. And I can't for me really entertain the possibility that it's not going to be okay.
Scott Benner 1:02:35
Yeah, there's no benefit, honestly. I mean, where would it get you?
Tziporah 1:02:41
I mean, there's a part of me, that's also like, okay, but that's real. I'm sitting here crying by myself, because I'm scared that something terrible and catastrophic is going to happen. And I won't have told her all the things I want to tell her before she turns 13. Like, yeah, what you said about how to gauge like, how much is the right amount? How brave do you need to show yourself to be how authentic can you be about some of the softer stuff and, you know, I just tried to figure it out with her. Like, I'm gauging how much she can handle. I'm stopping when it looks like she's had too much. And I really did believe this is all going to be okay. And even if it's worse than I thought, or even if it's, there's more down the line, like, we'll make it okay, we'll get okay. Because by the time we get there, we will have figured out how to be okay.
Scott Benner 1:03:26
I once thought, Oh, I am going to write another book. I'm going to end up writing down everything I wanted to tell my kids that I forgot to tell them. And it would be creepy. If I just wrote it down and handed it to him. Maybe I'll write a book about it. And then I thought writing a book so difficult, maybe just make a podcast about it. Either way, but it really is the it's a conundrum. It just there doesn't seem to be a win in it. Like, you know, as my son was leaving, I was like, Oh my God, there's so many things I didn't tell you like, and then I thought, I'm never gonna tell him these things. Like, I'm gonna stay involved in his life. And when I see an intersecting of moments, I'll say a thing. And hopefully I don't get too old, too fast. And I can stay on my toes. You know what I mean? And we do that, like, you know, there are days like, I don't talk to him. And I think I should have called him today. But he's like, going to a job and coming home and cooking for himself and cleaning his place. And, you know, like, he's, he's learning how to be a person by himself. He doesn't need to talk to me every day. I need to talk to him every day. He doesn't need to talk to me every day. And so, like when we finally do talk, and we kind of go over things, and you know, he'll, he'll ask questions, and he's like, I don't know, what do you think this means, you know, about a work thing or something like that? And I'll say, Well, I know how it seems to me, but you tell me what it feels like to you. And then he tells me and I go, that seems reasonable to me, or I think I would pay more attention to this part of it or, you know, and, and then there's this odd moment. This is the worst. There's this odd moment when you're done talking If you don't want to hang up, but there's just nothing left to say at the moment. And you're like, Alright, I'm gonna go and I'm like, Okay, I'm gonna go back home, I'm gonna go back to work. And then we're like, bye. And it was over. And I think, oh, he was right there, I should have thought of something else to say.
Tziporah 1:05:16
But it'd be real weird. If you're like, can I just listen to you breathing?
Scott Benner 1:05:20
No, I'm not doing that. Although he and his girlfriend watch movies together over FaceTime. Because they both took jobs in different cities. And it's amazing. So here's my question. Are there days when you forget about all this? And you get back into real life like petty minor things? And does does the cancer make you ever think? Why do we care about this? Where do you where do you find that you fall back into it? And it's very comfortable just to worry about things that you now know, don't matter? Because you now have, by the way, you now have, you have perspective, from a number of angles that people don't get perspective, from you have perspective, from a diabetes perspective, you have diet, you have perspective, from a cancer perspective, you're pretty high up on the perspective level at this point. But doesn't that does that still not mean that you don't walk into the kitchen and say something like, no one cleans these dishes, but me? Like, like, you know, or like, how does that all go?
Tziporah 1:06:14
I think I've definitely had less tolerance for things that someone else is like, Oh, this is super important. And I'm like, okay, but it's not. I mean, there definitely has have been stretches of time like that. Today. I think I'm, I'm probably still too close to be fully back in the business as usual. You know, I've got scars that haven't fully healed. I've got, you know, stuff from radiation, things that are just like reminders every day when I get out of the shower. I'm like, oh, yeah, this is like really pretty recent. I think I had a fantasy that it was just going to be alright, X number of months of treatment, and I'll be on the other side, I do think I am quicker in my mind to think this isn't really that important. What I haven't quite mastered is how to finesse, like navigating that with other people. You know, I don't want to be
Scott Benner 1:07:04
Oh, I know what you mean. Like it seems over to them, but it's not over to you. Yeah. You're almost like a, almost like a person who came home from war. And everybody's acting like it's over. And you're like, I'm still having bad dreams. Yeah, yeah. I brought it up. Because my mom the other day was like, you know, she's at and you know, she's, she's living in a place where she doesn't have a ton of mobility. Like, she can't just run out to the store if she wants to, and stuff like that. And so my brother works a weird shift. And he can't call her back right away. And she's right on the phone to me. She's like, nobody's calling me back. And I'm running out of milk. And I'm like, and I'm like, Alright, mom, and then we're talking about it and everything. And I wish he wasn't at, because what I wanted to say to her was Mom, do you remember like, last year when we all thought you were going to die? And you thought you were going to die? And it looked like you were gonna die. What are we doing here right now? Well, who cares? You know, like, like, let's get you some milk. Like, just figure it out. Don't be mad at people. Like let's just get in. And so I talked to my brother and I was like, Hey, you should just who cares? Like buyer? 20 gallons of milk? Like just put it piled up on the walls, if that's what you want, like, who cares? And he's like, Well, she gets like stuff where she lives. And I was like, Yeah, but she doesn't always want to go to the cafeteria. And he said, Yeah, he's like, Well, she's not that much money. I'm like, Brian, it doesn't matter. Like, like, just give her milk. Like she almost died. She's 80. Let's just let her do what she wants to do. And he agrees, like, don't get me wrong. He's not like, my brother's not like withholding milk from my mom. But, um, but it's, you imagine what a weird power move. But um, it's just that idea of like, this isn't important enough to be upset about, like, we saw, like the edge of death. Like, just let's just do what makes her happy. Who cares? You know? Anyway, like, it's just interesting to watch. Like, my mom, like, she slipped back into it. I was and, and like I said, if she was younger, I would have said, Mom, I don't think this is something we should be worried about. Because you cheated death. Like, let's be happy and enjoy every moment. But it was funny how quickly she slipped back into like, well, I don't know how I'm going to get my cereal. And I'm like, Okay, mom. I don't know. It just, it happens to like your kids move away or saw anything happens in life. And for a minute, you're full of this like perspective in your face. Yeah, so I guess you'd be excited for the time when it would go away.
Tziporah 1:09:27
I will be excited for the time when it's not on my mind every day, I would think I guess so. You know, one of my favorite features of my relationship with diabetes is that I just have gotten to know it well enough and how it behaves that I don't I don't worry about it every day. I really don't. You know, it's like my pump is set my decks comes on point like every everything's fine, right? And it is humming along in the background. It's always there. It's not like I ignore it, but it's always there. It doesn't require a lot of like active attention, right? So what you're describing is like that moment where this stuff that's a threat or that that Stokes fear moves into some background activity on the processor, and the linear back to worrying about regular BS.
Scott Benner 1:10:12
Yeah, I hate the regular stuff. Honestly, I don't want to be always upset and worried about big ideas. But I also just, I'm not a person who wants to be like, bitching that somebody didn't replace the paper towels yet. I mean, like so. Anyway. Yeah.
Tziporah 1:10:26
I think that's a good move. I mean, like, if it helps you to clarify what's really important, this thing with your mother? Like, that's a good outcome, right? If it helps you to clarify this stuff is peddling and isn't really worth it. That's not worth a fight. But that thing is like, those things are clarifying moments that I think is gonna be like, the best gift of something that's really scary, especially with your health.
Scott Benner 1:10:50
Yeah, no, I mean, it is one of those things like, right, if it doesn't get you, you do come out the other side with a clearer understanding of the world. You can Yeah, yeah, you're right. Yeah, I guess we're lucky
Tziporah 1:11:01
if we choose to see it. Some people don't.
Scott Benner 1:11:04
I don't even see it as something not worth being upset about. I almost sometimes see it as something not even worth. I don't know, knowing exists. Just, you know, like, what are we doing here talking about? Like, like, if you know, if mom wants this, this and this and her house at all times, and it goes bad because she doesn't use it. And we can afford it? I don't know, I don't know what we're talking about her. You know, like, just, I don't I don't even want to think about it. Like just get it done.
Tziporah 1:11:29
So I am pretty sure that 20 gallons of milk would go off. Go back real quick. I
Scott Benner 1:11:33
was making I was making that up. But I think she wants a pint or a half a gallon or something like
Tziporah 1:11:39
that, or a cow get her a dairy cow call it a day.
Scott Benner 1:11:42
She's in Wisconsin there probably one walking around outside. She just go find yourself. And it's a really, honestly, when she was talking, what I really heard was, I don't have enough control over my life. And I just I'd like to be in a little more control of things. And I thought and that sounds like Okay, good. Well, let's get because I told her I was like, Mom, listen, if you want, I said, we can get you an app, you can order food online, they'll bring it to you. And then my brother, my brother goes, Do you think mom's gonna be able to run that app? And I was like, Oh, that's a good, that's a good point. She's gonna end up, she'll buy a real cow or shelter house. And I still I said to her, I'm like, Well, I said, Mom, I'll put the app on my phone. And you and I can just do it together. Like we'll get on line. It'll tell you what you need. Now, I'll make sure you got it. You know, however, I'm like, This is not an insurmountable problem. Like, let's, let's, let's not be upset, you know,
Tziporah 1:12:33
she's lucky. How so? She's lucky that you see her and what she needs and what really matters as clearly as you do.
Scott Benner 1:12:40
I don't know what the point is. I'm trying to I mean, she's at you don't I mean? Like, what are we gonna, we're gonna fix something. Now. You don't I mean, like, it's, she's got, she's got her thing going. And there's things she needs and my feelings about them or someone else's feelings or how it makes you know how her situation makes another person feel it's just not important. Just doesn't matter. You know, something's gonna happen one day, and you're going to be back in the reality of it. And the first thing you're going to think is, oh, I shouldn't have made such a big deal out of this thing. It's just just, I don't know. Just try to remember that the moments when you're not scared for your life, I guess. Right. Anything we didn't talk about?
Tziporah 1:13:24
There it is, again, my imagination trumpet? I don't I don't think so. I was better with you this time than I was last time. What do you think happened last time that was different. Your voice
Scott Benner 1:13:34
throws me. You're so measured, but you're not slow. And I needed to lead your I should have let your words breathe more or less time. All your hot takes are smart. And you can talk without thinking, which I find to be a very, I don't know if that makes sense or not. Interesting. Yeah. Like, do you ever hear me go off on a tangent and you're like, Wow, he's really talking. But then you listen and you think, wow, that all made sense. Yeah, I don't know how that happens. So if people aren't speaking quickly enough, I can make the assumption that they're making it up as they're going along, instead of there being thoughtful and choosing their words. So whereas I use extra words I don't need because I'm talking while I'm while my brains forming thoughts, you form your thoughts and then you speak. I remember getting down with you last time and realizing I You're also not monotone. But you're you're very even when you speak. And there's something about that that makes me feel like I have to it can make me feel like I have to fill the space with excitement. If that makes sense. And this time I didn't I knew you were going to deliver. So yeah, I was able to just sit back and let it happen. I know that that's very inside baseball on on, on hosting a podcast but And I've been learning it for years. I used to make the mistake more with Southern people because they speak slower. And or they can speak more slowly. And I had trouble with the gaps of silence. Yep. Like, and so I'm better with that now, too. Anyway, does that did you feel that when we spoke the first time, I didn't
Tziporah 1:15:23
feel it so much? The things that you're noticing now in retrospect, I can see it. But it also felt like a very easy conversation. It felt well paced that felt balanced. I didn't. I didn't feel like oh, Scott's gonna fill the space here.
Scott Benner 1:15:37
No, it wasn't like that. It's me being ultra aware of it. Like I'm always trying to fine tune the conversation. So that it's ultimately that I need it to be listened double enough to that somebody wants to make it through the whole thing. Oh, for sure. Yeah, cuz I don't know what the point is of you and me feeling good about this when it's over. But everybody else tuned out 10 minutes ago? Absolutely. Yeah. And, and so I'm always kind of just reevaluating it, you are easily a person who you do not match my, you don't match my energy. You don't match my speaking style. And that should mean that we're not a good conversation together. But you and I are a good conversation together. Our intellect is is similar. Does that make sense?
Tziporah 1:16:19
Yeah, yeah. I'm gonna take that as a compliment. So thank you.
Scott Benner 1:16:23
I was complimenting you. Not me. I was like, I'm lucky to be here in this Congress. I feel like I'm lucky to be in this conversation with you. Thank you. No, of course, not. But it seriously, I had a really interesting, I'm gonna let you go in a minute. But I had a really interesting conversation yesterday with a gentleman whose kid was diagnosed in the last couple of years as a private conversation. And they're in the position professionally, where they were able to, I mean, I didn't have all the details sound like some money was made. And they were able to kind of walk away from their job. And they, they want to put their efforts, their professional efforts into helping people with diabetes. And this person has been kind of like on a, almost like a talking tour, meeting people who help people with type one and, and trying to figure out like, what, what's missing in the space and things like that. And we must have talked, I mean, I jumped on the phone. If I'm being candid, I get jumped off on the phone to be polite. And that, and because his previous work experience, I've found impressive, so I thought this won't be a waste of time. And then we got on so well. I'm afraid to look at the call timer from yesterday, I think it's possible, we spoke for 90 minutes on the phone. When I got done, I was just very impressed. You know, like really impressed with the pace that he spoke at and still made utter sense. Every word that came out of his mouth. And there are moments when I could feel that he's better educated than I am, because he didn't farm for for words where I sometimes lose my words and things like that. And then I thought, Oh, maybe I shouldn't went to college. Like I actually thought that while I was talking to him, like maybe I should have gone to college. And but yet, he was complimenting me for being honest, where he wasn't running into a lot of that these conversations, a lot of people were protecting their position and, you know, saying high minded things that weren't going to actually amount to anything for people with diabetes. And, and it was just, it was really I said to him afterwards, I was like, I really enjoyed this. You know, I don't have a ton of private conversations that I walk away from, like, I actually that's one of the secrets about the podcast. I really love talking to people. Yeah. And I don't know, I don't get it enough in my life. So yeah, this is a good excuse to do it.
Tziporah 1:18:46
Well, I think it's awesome. You've turned it in that thing. You've turned it into something that just is like, like pretty remarkable and super high value to a lot of people.
Scott Benner 1:18:55
Finally my dad said somebody was going to punch me in the face, but he was wrong. I mean,
Tziporah 1:18:59
like that story has not been written to the end yet. It's possible. I'm gonna punch you in the face.
Scott Benner 1:19:04
Someone's gonna do it eventually. But what is cool, say all the time, he's like one of those podcasts people is going to kill you.
Tziporah 1:19:10
So please don't even put that out there in the universe.
Scott Benner 1:19:13
Can you imagine? I mean, that's not joking about it. Yeah, no, I It's funny, because even when you look back on it, I am adopted. I've said this on the podcast before, like, my parents would have conversations. And I'd be like that I could think in my head. I'd be like, that's not the right answer. Like how are you people not seeing the right answer, you know, and it was all very confusing. And I always thought of it from my perspective. It wasn't till I was older than I thought of it from his perspective. Like my dad is an example thought I was sarcastic. I was just thinking more quickly than he was. And our thoughts weren't aligned because we're not genetically linked in any way. And he just thought I was he thought I was an asshole. Like he really did. He was like, What's this kid being a jerk for all the time? And I'm busy going like, Hey, I think we could do this better or, you know, why are you not considering this? And I look back now and I think that's all it was just a week or two. We were incompatible, honestly, like, intellectually incompatible. It's fun to talk to people and not care about that. Yeah, like, that's what I love about the podcast, like there have peep, there have been people who have gotten on in my real life, I might not talk to this person. And what a mistake that would be. Yeah, you know, and then you sit down and talk to them and realize that everybody, everybody's story is incredibly valuable and their perspectives are and the way they think through things or sometimes don't think through them is, is it educational for the people listening and often for them as well. So anyway, I wish I came up with more big words is what I was just saying.
Tziporah 1:20:49
Yeah, you don't need big words. You don't need that.
Scott Benner 1:20:53
In my very first experience like this. My wife was kind of the youngest person in her company when we were really young. So we got invited to like a party at someone's home, where everyone was just older than we were. And it was a little weird, because it's just like, we were raising kids, like everybody who had kids Cole's age was 10 years older than us. So you always you felt like an outsider. Like, you're like, I don't belong here, you know, but we were at this party. And I just was like, What am I going to do? I can make a stand in a corner like Kelly's over there. Like with the women folk, I should go outside where the men folk are. And we were just out talking, and I don't know what I have no idea what happened. And at the end of the night, the host of the party, who was a gentleman, much older than me, pulled me aside and said, I really enjoyed speaking with you. And I was like, Oh, thank you. And then I didn't think anything of it and left, but now I look back and I realized he was shocked at somebody younger than him gotten that conversation hung in that conversation. Yeah, yeah, I didn't know that at the time.
Tziporah 1:21:57
So I thought you were gonna say punched you in the face. So this was a much better end and gave me
Scott Benner 1:22:01
a cigar actually.
Tziporah 1:22:03
Now that's a big deal. Yeah. Yeah, I
Scott Benner 1:22:05
thought so too. So this was very interesting. Anyway, this is not about me, it's about you. And let me end this by saying I will think of you and I hope nothing but the best. The you know, continue to find good answers and follow your path. I I'm I'm looking I'm in. I'm on your side and in your corner, that's for sure.
Tziporah 1:22:27
I appreciate it. I'm gonna do my best for you and your mom, too, by the way.
Scott Benner 1:22:31
Oh, thank you. Yeah, she's doing she really is doing terrific. So
Tziporah 1:22:34
yet or some milk for God's sake. Yeah. Poor woman.
Scott Benner 1:22:37
It's not like she's even lactose intolerant. What do you think we should call the episode? I have my answer already.
Tziporah 1:22:44
Oh, my God. If you say imagination, trumpet, I'm out.
Scott Benner 1:22:46
It's insightful and fun. Oh, what do you think I got it. Oh, no. No, whack a mole. Love it. There we are. I love it. I only wrote down one for you. This is it. This lady story is about fighting the fight in front of her. We'll call him likable. Yeah, great. All right, hold on one second for me. Okay. Okay, thanks.
I want to thanks for for coming on the show again and being so terrific. I also want to thank us Med and remind you to go to us med.com forward slash juice box or call 888-721-1514 Get your free benefits check now. And don't forget cozy earth.com. use the offer code juice box at checkout to save 40% off of your entire order. Check out the private Facebook group Juicebox Podcast type one diabetes. And of course, you can visit all the sponsors in the show notes of your podcast player or juicebox podcast.com. There's links there to everybody and when you're supporting sponsors, you're supporting the show. Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast.
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#1045 Southern Flair
Sarah's daughter has type 1 diabetes and Megan's father does too.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends, and welcome to episode 1045 of the Juicebox Podcast
you may be thinking Scott, your voice sounds magnificent today it does doesn't it? Today I'll be speaking with Sarah. She has a daughter who was diagnosed with type one diabetes when she was eight years old just five years ago. Sarah's best friend Meghan also pops up on this interview. Megan is the daughter of a type one diabetic. And Megan's dad is 78 years old and was diagnosed when he was 12. I don't know how to describe this conversation, but it's got a southern flare. So we're gonna call it southern flare. 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 are becoming bold with insulin. I'm going to make this in one cut. If you'd like to save 40% off@cozier.com Just use the offer code juice box at checkout. You want to drink ag one do it at drink ag one.com forward slash juice box you will get a year supply of vitamin D and five free travel packs at my link with your first order. Dog Bart I don't care. diabetes pro tip.com. Go check it out the all new remaster diabetes Pro Tip series begins at episode 1000 is in your audio players. It's on the website. You have to listen. One takes Scott they call me. Let's try to keep this going, shall we? This episode of The Juicebox Podcast is sponsored by us med us med is the place where Arden gets her diabetes supplies from and you can too I'm talking about pumps. CGM is so much more you'll hear us med.com forward slash juice box or call 888-721-1514 I'm talking about libre. I'm talking about Dexcom talking about Omni pod and talking about tandem and talking about test trips and talking about insulin. I'm talking about us med.
Sarah 2:06
Hey, my name is Sarah. And I have a child who is type one diabetic. She is 14 and she was diagnosed when she was eight years old. Just a little over five years ago.
Scott Benner 2:18
She's 14 She was diagnosed when she was eight, six years ago. Is that right? Or did you just tell me a little over
Sarah 2:25
five years she was almost nine when she was diagnosed? Yeah,
Scott Benner 2:28
five years. Do you Sarah have type one diabetes?
Sarah 2:31
I do not know what am I immediate family. But as it turns out, I've got several cousins with type one. Okay, and one has this story is that he was in France. And he nearly died when he was diagnosed. And I didn't realize really what that meant. I had heard the story and I've just not seen it. He lives in Arizona. So I don't I wouldn't have an opportunity to see him and ask him about it. But I would love to know how his diagnosis story and how he's doing now.
Scott Benner 3:00
Yeah, my wife was in France recently and brought back French COVID and almost killed all of us. So not the same story. But I hearing the word France made me uncomfortable. Okay, Sara, so I'm gonna get back to you. But you brought a friend.
Sarah 3:14
I did her and her name is Megan. I'll let her introduce herself, though.
Megan 3:18
Hey, hey, I'm Megan. And I'm one of Sarah's friends besties. And I have the daughter of a type one diabetic. He's currently 78 years old and was diagnosed when he was around 12.
Scott Benner 3:33
Wow. So your thought for you grew up with a father that had type one? Yes. Does he have any other autoimmune issues?
Megan 3:42
Not that I'm aware of.
Scott Benner 3:43
Yeah. How about you
Megan 3:44
issues but no, no. The rest. I have to well for siblings, and none of them have none of us have any.
Scott Benner 3:54
Celiac that a Lago thyroid. Nothing. bad allergies? No, nope. Nope. Sneezing a lot during the summer. Nothing like that. Okay. You paused when you said How many siblings you have? Are some of them like half brothers and sisters. Yeah, but they're all for my dad. Gotcha. And nobody else that you know of in your extended family has anything like this? No, no. And Sarah, you weren't close with these cousins. Like, there's a guy.
Sarah 4:24
We didn't grow up together. And they're they're mainly distant cousins. I think my my second cousin, the one that was in France, that's probably the closest relation
Scott Benner 4:32
I see. Yeah. So Sarah, why don't we start off a little bit and you tell me about how you figured out your daughter had type one?
Sarah 4:39
Well, at the beginning of the third grade, if looking back is 2020 right as vision is 2020. I got a phone call from the nurse at the beginning of third grade and she said that Reagan had taken a spill at recess and had really quite injured herself and she wasn't going to be really learning Anything for the rest of the day? Would I mind coming and picking her up and I suggest her, that's fine. I'll come and get her. And she had scraped like the whole side of her body. And then after school was over, I got two or three phone calls from other parents saying that their kids had come home in tears, because she had taken a spill so hard that upset them. Well, I see. Yeah. And so I looking back, I wonder if that maybe didn't, that was not the trigger. Maybe it was not a virus that I know about. But I don't know, you know, what we may never know. But fast forward to that was probably the beginning of September, this is about mid October. And she'd been making some complaints like bathroom issues, some maybe some burning when she urinated. And I've never had a UTI personally. And so I kind of was like, You're not really selling it to me, you're complaining once you know, this one on for two weeks. Like she would say, you know, what says this little bug in you? And she'd say, well, a little bit this morning, but not since then. And then we went to Vacation. And there were some incidences that I can tell you, I can look back and say, Yeah, that was probably a lower high blood sugar. There were some incidences that while we were on vacation, and then the Monday she was supposed to go back to school, I went to go wake her up, and she is strolling out of her bathroom, combing her wet hair. And her bed is dismantled. And there's a large, wet, wet spot in the middle of it. And I said, Hey, friend, what's going on? And she said, Well, I wet the bed. And I tried to clean this as a kid that never wets the bed. And she said I tried to clean it up myself. But it was proving I just couldn't do it, mom. And then I've felt yucky because I've had pee everywhere. So I decided to take a shower. I said about what time did this happen? And she said about 4am. And this was maybe 6am. And I said, you know this is what momming is all about. So you know if you have a problem like this, please come and get me. This is what parents are for. And so I thought well, she's got a UTI, I guess. And so we went to the doctor's office has a walk at a really great walk in clinic and they took a urine sample and she was more than happy to drink the water I gave her in fact she filled up her her little paper cup twice and got a urine sample from her she peed on my hand which she thought was hilarious. And we gave a good choice where you can add the the PA came in the room and he was like there's no blood. There's no bacteria in her urine sample but the sugar is it 93 And I was enough for him to mention it weighed 793 Got him? Yeah, well and and her urine, so I don't know. Okay.
Scott Benner 7:49
So is that her? Yes. Yeah. Is she gonna come in and tell us about this moment? Yeah, because so far this story only proves to me that children do not know how much mattress is cost.
Sarah 7:59
I know. I'm so sorry. I'm gonna have to pause. We're having a few tears.
Scott Benner 8:03
Go ahead, do your thing. I'm actually going to talk to Megan you can go ahead and I'm gonna mute. Megan, I have a question for you that I am wondering now. So you guys are friends. You've known each other this whole time watching her daughter have diabetes. Does it bring up any memories of growing up with a type one or is it So did your dad handle it so differently that this all looks new to you?
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Megan 10:47
Oh, wow. It's not all new to me at all. Sarah texted me from the ER er where the doctor went when she had taken Reagan in and said, the blood sugar is 300. You remember texted me that Sarah? Yeah, I do in this. And I remember thinking, Oh, wow, Reagan could be diabetic. Yeah. So I have watched Reagan do some of her. Whenever she changes her site. I've watched her do that. And I'm just so proud of her. Like I have so much compassion for her because I know my dad has lived a very long, full life compared with what folks use to be able to live with diabetes. So what Reagan is dealing with is not new to me. I just think it's interesting watching a child do it because I didn't get to see that part of my dad.
Scott Benner 11:38
But I'm assuming I mean, I guess I just have to ask you. How old are you? Megan?
Megan 11:44
I'm 4444.
Scott Benner 11:45
So your dad was in his 30s ish around there. And how many years ago was that? 44 years ago? See when your MBA? Yeah. So when you were born, your dad was shooting insulin twice a day probably. And just nothing else I would imagine wasn't testing or anything I would imagine.
Megan 12:07
He he's told me a little bit about the trajectory. He used to have to pee on a stick and wait several minutes. like growing up. I don't know exactly the timeline of that. But ever since I've remembered he has been testing his blood. So I remember helping him test his blood growing up. But the wait was a minute or two on the machine. When he was doing it when I was growing up.
Scott Benner 12:30
Do you think? Do you ever remember it impacting his life poorly? Hmm. Yeah. How in ways that you saw as a child, I'm wondering about
Megan 12:40
the middle of the night lows. And we had to call the emergency room that the ambulance multiple times, I can envision my mother screaming, yelling my dad's name and trying to hold him down one time he got so low, he was kind of convulsing. And it gives me blood sugar was like 20 or something. And so yes, there is several moments and he never went in an ambulance. Anytime we call the ambulance, they would come in, put an IV in and he would be back normal and not and not want to go to the hospital and not want to go to the hospital. He's a tough cookie in terms of and a little stubborn. But he did not want to go to the hospital.
Scott Benner 13:26
Was there any talk of wow, like I hope the kids don't get it? Did anybody talk like that about it? Did you ever grow up wondering if it would happen to you?
Megan 13:36
Yes, I did wonder I was dealing with some other conditions. And I remember my parents, you know, thinking that I should probably be tested. And I'm just grateful that that didn't fall on any the rest of us. So I do I do feel like I know how to deal with it being around others and it's helped me deal with students. I'm a in the teaching profession. So it's helped me be aware, when a student tells me they have diabetes, I'm hyper aware of what they might need.
Scott Benner 14:09
So Sarah, when you realize that your daughter has type one, do you think of Meghan right away? Do you think oh, I know somebody who has experience with this?
Sarah 14:18
Oh, absolutely. And just to kind of finish the story, um, the sugar in her urine was too high. Obviously, EPA brought it up. And he said he was going to order fingerstick and it came back the nurse went hmm. And I said, What was it she said, 310. And I said, Hmm, and I want to say the D word. But the PA came back in and was like, Hey, we think we're gonna send you on a children's. And I'm actually I'm texting my brother in law, who's an ER pediatrician immediately, and he's not texting me back because he had a Do Not Disturb on and so I'm texting my husband like, hey, you need to call your brother. We've got a situation here. And we actually had been going to the JDRF galas for years before her diagnosis. So I knew enough. Why were you doing that? We so have some friends of ours, their son is type one. He was diagnosed a week before he went to kindergarten. And this is maybe three or four years after his diagnosis. And so they had invited us they had bought a table and and had invited us several, I think all three years since then we had been going. It's just interesting that we also ended up with a kid with type one, and she I texted her directly immediately as well. And, you know, and of course, Megan and I don't know if you remember Megan, but she texted me back and she was like, Sarah, you're gonna be a really great diabetes mom. No. And I
Scott Benner 15:45
did that work out there or is it
Sarah 15:49
depends on the day, Scott. You know, people ask me, how's Reagan? And I'm like, well, she's 14. Like, no, how is she? And I said, No, really? She's 14.
Megan 16:01
You know, I don't remember saying that to Sarah. But Sarah handled the unique challenges that came with my own medical condition. So well, like she was a friend like no other friend I had. So I knew that the way that she dealt with me was going to transfer into her being a superstar diabetes, diabetic mom.
Scott Benner 16:22
Cool. That's it. It's also so strange that you were at like these fundraisers for years. And then it happened. My wife and I went out for our anniversary. And we just like, we were in this kind of fancy restaurant. And I said, Do you want to try sweet breads and we didn't even know what they were and they came in their pancreas is right. And then Arden gets diabetes like a little while later. And you know, I was like, Well, this is just see we got bed. We got bad mojo going now because we think the pancreas is from those.
Sarah 16:52
I'll do you one better. So we had bought a black lab over the summer. And Dolly Parton's character and Steel Magnolias was true V. Jones. And so the girls were given three choices. One of them was truly and they chose that two months before Reagan was diagnosed. Interesting.
Scott Benner 17:13
Yeah, I mean, it's all meaningless. But it's incredibly interesting. It is so
Sarah 17:17
little God winks. I see it, but But yeah, and Dolly Parton is from our area. So that's why we're kind of little a little loyal to Dolly Parton. But wait, if you've been
Scott Benner 17:28
to Dollywood Yeah. Like I go all the time. I can see you're just nodding away. Not all the time. What is Dolly? What is the theme park right like with roller coasters and things like that? Yeah, the Holly's got her finger and everything. She's also 800 years old and somehow still alive. How does that happen? Is that
Sarah 17:47
she, my daughter have the same birthday again. So I know. Right? And our pediatricians youngest son is type one, or pharmacist when we go to pick up our first pickup. He turns out he's type one. I mean, like,
Scott Benner 18:02
if it wasn't, it's possible. You're the problem, sir. Maybe you were the like,
Sarah 18:07
maybe your patients were in alignment.
Scott Benner 18:10
Like the people are going to be dodging you after they hear how many people you know you have to fight when I should buy a lottery ticket. Is it? Is it a the doctors ever mentioned it like that? You're in a spot where a lot of people have it?
Sarah 18:20
No, no, no, that's never been I think it's randomness. That's interesting. And it's it's pretty remarkable. The the nurse when she went back to school three days later, at diagnosis, her agency was only 8.5. So we got extremely lucky. They sent her home with us that night. That day, she was diagnosed Yeah, it was wild. I was a nervous Nellie.
Scott Benner 18:44
Like, I don't really know what I'm doing. But sure, well, wait,
Sarah 18:47
are you sure no one's gonna die. And I was like, I can admit her. And then I got to thinking like, that sounds scarier.
Scott Benner 18:52
Right. How did she? I mean, she just had such an interesting age. Did she, like acclimate to it well, or was it? Was it troublesome or how did the beginning go?
Sarah 19:04
She's very, she was very compliant. You know, when she was first died, and she is now for the most part. She just wants a lot more independence. And she and I are hardwired differently. And that's coming out as she's getting older. But when back when she was first diagnosed, very compliant, very willing to she poked her finger for the first time in the doctor's office. The nurses couldn't believe it. Yeah, about a month after she was diagnosed, she did her own injection in her belly. She seems to want to take ownership, and I'm really grateful for that.
Scott Benner 19:37
What do you think that means? Because I interview a lot of people. And I always kind of like I hear their voices in my head. 2425 26 years old telling me I pushed my parents for independence, but I didn't really know what it meant and ended up not doing a good job. Like taking care of myself. I just didn't want them involved in it. And so like there's that bad All kinds of trying to figure out how to give them what they need. As far as space goes, without them, you know, just going off the deep end as far as their care. I know Arden's my daughter, Meghan is 18. She's been in college now for like half a half a year. And I mean, that's there are days when I look and I'm like, Oh, she should be doing this. Or she should be doing that. And I'm just like, I'm not gonna push her about it, you know, like, so I bring it up at different times. And she does. Overall, she does a really great job. She's obviously incredibly busy at school. But I talked to so many people who get there. And it's just like that, that that switch goes off, like, I'm at college, like, whoo, you know, and then they let go of everything, not just one thing. And so you have a seat in my heart, like the way I think you have like three and a half years to like, put all your pieces in order, and then just like step back and see how they work out.
Sarah 20:57
Yeah, well, I kind of see it as practicing now. I, for a while there, I was hyper focused on Dexcom. She's not looping, so I can't Bolus her remotely. In our state, you have to have doctor's orders for certain things. And so it got really stressful for me. She just doesn't handle diabetes the way I would. And that doesn't make the way she handles it wrong.
Scott Benner 21:19
It makes I think you're talking about it. You're very type A, and she's Oh, yeah, absolutely kind of chilled out. And I can see because there's three of us talking we have I don't usually record with cameras on so I can see everybody. It doesn't look like anything's ever been on the floor in that room that you're in right now.
Sarah 21:40
In this room?
Scott Benner 21:41
Yes. That room was let me know. You're gonna turn the camera and show me the disaster. Now, so Okay, so how does that? Well, I guess first of all, are you married? Sir? Yes, yeah. Does your husband get involved in this at all?
Sarah 21:57
Yes. So actually, I don't follow her on Dexcom any longer, because it just it got to where that was, what it was where all our all of our conversations ended up a diabetes. And she she was very, at this point was very, you know, pushing back a whole lot. And Jason was like, I won't, I had a meltdown. Which MEGAN I'm sure that's very hard to imagine now. But a little bit of a meltdown, and I'm yelling at my husband, you know, she doesn't care. And he's like, get off of Dexcom get off Dexcom now, and I got off of Dexcom. I erased it from my phone. And I've been off of it ever since. And, and she does find and her first agency after I got off of Dexcom was seven, which is the lowest she's ever had. Right? And then since then she's had a 7.2. Now that doesn't mean I still get her clarity reports and so I help her make changes. And her I think she needs a reset at the moment. But I help her make changes to her insulin McCarver she's still growing.
Scott Benner 23:02
Yeah, I pushed Arden's basil a couple of times today. And if I'm being honest, she doesn't even know. So I was just like, looking, I can see, like, I can see what's happening. And, and, and I was like that she needs like two units here. And she's not she's not going to do it. Like she's in class. And I can see where she ate and I saw what she gave herself. So there's a little bit of unknown, but I couldn't I looked at the trend. And I was like she needs a couple more units. I could push her basil and maybe get like an extra unit in there over the next half an hour and see what happens. And then I
Sarah 23:35
mean, Scott in my head, I'm thinking I could win that game. Yeah. Coach, I could win. And that's what my husband says. He said, You know, you kind of see it as a game. And she doesn't see it as a game. But there's so much more at stake. But and so to me, that's what that's where the stress comes in.
Scott Benner 23:51
Do you really see it that way? Or do you just see her blood sugar being high and it makes you worried for her health? Like what's the what was your first ask? Do you actually see it as like just I'm going to try to beat the game or do you see it as her health and you can handle it?
Sarah 24:04
I definitely see as her health is at stake first. Okay, my husband has made the comment. I think you gamify it you know and I was like I'm not sure I ever consciously thought about it that way
Scott Benner 24:17
lighting you guys do that all the time. My wife said that to me one time and I was like we are not going down any woke roads. So I'd gaslighting you I'm like I'm saying something to you that you don't agree with
Sarah 24:33
those two? Yeah. We don't share brain. It's very inconvenient.
Scott Benner 24:37
But does your husband he's not doing what you want him to do though, right?
Sarah 24:44
Oh, no, he's doing exactly what I want to do. Oh.
Scott Benner 24:48
Well, you said that it made me uncomfortable as a married person. I was like she No,
Sarah 24:51
no, it's not what I expect him to do is different than what I expect me to do.
Scott Benner 24:56
Oh, yeah. But I mean you he's not doing what you want. You want to have like you, it's not what you would do. He doesn't manage
Sarah 25:02
the way I would, but I don't expect him to write. I expect him to keep her alive.
Scott Benner 25:06
What was very once you when you were on top of it.
Sarah 25:09
So I started listening to juicebox, like over the summer, and I started tightening down her, her Basal rates and her insulin to carb ratios and her correction factors. And but before that, she she would run seven and a half ish 7.7, which, you know, the endocrinologist sees seven and a half to eight and a half as being in range for her age. Yeah, because of adolescent hormones. But to me, at one point, and this is the only time I've ever been mad at the doctor's office, was when she was still on shots. And I was like, we need we need help. Or she's running too high all the time. And she's the nurse said, Well, her numbers that you just gave me those were good numbers. And I said, that's because I'm, I'm cheating the system, I'm giving her extra insulin. And the nurse had the nerve to say to me, Well, maybe you should just let her run high overnight. And I said that amounts to neglect in my head. I'm not doing well, it's
Scott Benner 26:05
just silly to you could just change the settings like yeah, it's it's, I mean, it doesn't matter what you call it, you're using a certain amount of insulin, you're having a certain outcome, and you wanted to use more you wanted the settings turned up to meet what you were doing. I think what you were doing was right.
Sarah 26:21
No, I know what I was doing was right. And I finally say, you know, well, I've told you how much extra insulin I'm giving her, tell the doctor and get the orders written. And she said, Okay. And so that's when I realized that I could change her her rates that I could change her basil. And then it got to the point where the endocrinologist said, I trust you to make those changes. Just tell me what they are, what changes you want to make. And I'll send the doctor's orders to the nurse to the school. Because it's public school.
Scott Benner 26:55
So I mean, you haven't said yet but you had her a one see it like but 6.2 Were you down there?
Sarah 27:02
No, the lowest she's ever been is
Scott Benner 27:06
seven. Okay, so you guys are doing well. You're just doing it differently, then
Sarah 27:09
we're Yeah, we're getting there. And and like I said, I really feel like she needs a reset. I need to take her total insulin consumption for the day for like a week and then like figure out
Scott Benner 27:22
and she's not pumping.
Sarah 27:24
She Yes, she is. She is now what? Yeah, that incident that I talked about before. That's when we would MDI.
Scott Benner 27:30
But yeah, so is she using an algorithm?
Sarah 27:34
She's on the control IQ with tandem.
Scott Benner 27:36
I see. Okay, yeah. Well, that thing should definitely be able to do a six in there somewhere. Yes, yeah. So what is it? So go ahead, like, just tell me what's not happening that needs to happen? Is it Pre-Bolus think Yeah,
Sarah 27:49
okay. Yeah, that's absolutely Pre-Bolus. And honestly, my kid loves to eat. And she's lazy. And she doesn't want to look up insulin to carb. Or excuse me, she didn't want to look up carb counts. And and Megan's nodding her head because I've heard her complain that her dad can can be the same way. Yeah, I think you told me at one point, it was like he was always doing 70 carbs. 70 carbs for every meal. That right?
Megan 28:12
Yeah, I don't understand all the numbers you guys are mentioning, but we definitely know how to current count carbs. But some of us exaggerate a little bit more in our house.
Sarah 28:22
Well, how do you mean exaggerate? What does that mean?
Megan 28:26
Oh, just don't realize that a cinnamon crunch bagel at Panera has like 77 carbs in it. And only Bolus for 50
Sarah 28:35
Oh, and shocking. Yeah, my blood sugar's to the roof. I'm just
Scott Benner 28:39
right about that, huh? No, it's just really interesting. Hey, man, I'm gonna want you to tell us a story in a minute. And you're rattling when you're talking. So would you jump off and jump back on through your phone for me? Yeah, with your head with this plug in headphones with your phone? Yeah. I'll let you back in when you come back. I can't wait to let her tell that story. It's crazy. I know. Because right now people are like, Why is the other lady here? I know that. Can't wait for people to find out. Why? Because it's really like it's really interesting. So alright, so
Sarah 29:09
I have to tell you after her diagnosis, this is this is kind of a really neat thing about about Reagan, when she was diagnosed, she had been training for a 5k. So all the water she was drinking, easily explainable all the sleeping she was doing between on the 10 minute ride home from school to home, easily explainable. And then she's diagnosed and I told the Endo, I said, I'm not sure I'm willing to let diabetes have this. She's been training really hard to run the five K's in six weeks. How are we going to do this? And she said, You should absolutely do this. She needs to know that exercise is important to her. And we will get it figured out so so we did and then she did the five caves, the beginning of December. And the whole time she's being diagnosed. I'm with her and If I fall apart, then it's a disaster. So I never had this like fall apart. Grief, like crystallized moment. Yeah. Now I spent the first two weeks after she was diagnosed crying over stupid stuff, as most people do, you know, that's a very normal response to the grief that you feel over losing what you feel like I had healthy child. And now I don't write that I've never had that crystallized like moment where you just like kind of fall apart. And we finished that you have to have a parent running with you. It's the Girls on the Run. And we finished the 5k. And as we're approaching the finish line, I'm like, oh, no, it's coming. I can feel it. And our families are there because they've we've been through this thing. And, and an eight year old is finishing a 5k. And we finish and we're taking pictures, and I'm like, this is the dam is about to bust and we took pictures, and I looked at my husband and I said, Oh my gosh, I'm so proud of her. But I'm, I'm so sad.
Scott Benner 31:03
Yeah. Yeah, I know. That's horrible. But it's good.
Sarah 31:09
But it was wonderful to she she did this really hard thing. And she did it really well. But yeah, that was when I had my fall apart sobbing
Scott Benner 31:21
there at the at the 5k finish line with everybody in front
Sarah 31:25
of God and every bed out of my house where I have Kleenex is my husband before thing he probably had snot everywhere. But But yeah,
Scott Benner 31:34
I've decided now's the time. Well, it's an emotional moment to begin with, and they know what to do. Alright, so Megan, when you went off for a second, I commented to Sarah and I said, I can't help people by an hour like wondering why is Meghan on the show? So I'm, I'm just very interested in this. So when when does your father say to you like that? He's having trouble. Like, where does that all start? When did when are you aware of his health issues? Well, can you hear me? Yeah, your sound right?
Megan 32:05
Okay, great. When I was 22, I was traveling. And I remember my mom telling me over the phone, that dad would eventually need to have a kidney transplant. I remember where I was, when that happened. It's kind of one of those Kennedy dying moments where you remember where you are, or 911 or something. So yeah, I remember that. And that was when I was 22. So that's when I realized, okay, we're getting to that point where it's taking a toll on his body. I don't think I was as aware of things in the past. I mean, I'd been scared from low blood sugars or high blood sugars, and hearing and vomit. But I didn't realize the toll it was taking on his body until I was I guess, 22. Sarah might remember something different, because I'm sure we discussed all this at some point. But
Sarah 32:57
yeah, interject here that I remember, we we used to live in a condo in the same condo complex right after college, and I had just gotten married. And Megan, and I would go walking. And I remember you telling me we were probably 25 at the time. And you said, you know, I keep myself healthy in case my dad needs one of my kidneys one day. And I was like, wow, that's, I mean, you were eating better than you were walking frequently. And you're doing yoga and exercising.
Scott Benner 33:29
So Megan, that weighed on you. You were always thinking about that?
Megan 33:33
Yes, because my parents had done so much for me growing up, I remember as a young person, because I went through a lot of surgeries and such. And I remember telling my parents, I'm going to pay you back someday, thinking that I would be able to like financially pay them back, which I didn't understand health insurance at the time, that that wasn't necessary. But little did I know that I would be a match for him, you know, 15 or so years, 13 years after he told me or mom told me that he would need a kidney that I would like secretly go to the doctors behind their back and to see if I was going to be a match. Because I didn't want them to get their hopes up when they said that dad was on the kidney list that kidney donor list.
Scott Benner 34:18
Did he do a double transplanted to get a pancreas as well? Not from you obviously. But did they did they talk about that at the time? Not that I remember. Okay, and how long so how long ago? Was he in his 50s when he needed to? Okay, now he
Megan 34:32
was 6868 and I was 35. Okay, and so I went through all the testing, I would go to their appointments with them just because the I'm the I'm kind of the child that's available and nearby and I'm not I'm not married or don't have any kids so I have time and flexibility with my schedule and I'm kind of I'm not as tight as Sarah, but I'm a caretaker and I definitely feel called to return The favor are my parents taking such good care of me. So I went to the doctor's appointment and I was taking notes and just thinking, I can't wait to spend 24 hours peeing into this container. So I can find out if I'm going to be a match.
Scott Benner 35:11
What a lovely fast. Yeah. When you find out you're really a match. And is there any moment your head really like, I shouldn't open my mouth? I don't want it to give anybody my kidney, or did you never, like look back at it that way?
Megan 35:26
Never looked back at it that way. It was just, there's no fear. It was just the right thing to do. And what an opportunity for me to do that there were people who criticize me because we told talk to the news. The news thought it was interesting that a daughter was willing to give a parent a kidney. Some people were quite critical. And I remember thinking,
Scott Benner 35:49
how could they be critical? What's the argument I
Megan 35:53
had such longer to live and that I was going to sacrifice a part of my body to someone who wasn't going to live that long. And I just did not see it that way. I thought I am perfectly healthy. When I learned more about the kidneys and how much you actually use of them. If you're a healthy individual. I don't even need my second kidney. It wasn't even a question. And I had, I actually asked them it was April or May. And I remember saying, how fast can we do this? I have the summer off to recover. Can this happen? Pretty soon, so that I had the summer off? And she's like, absolutely. So it was June 23. I think Wow. We 2013. So now
Scott Benner 36:35
Sarah, this is obviously a an incredible kindness that Meghan has performed. And that's like 10 years ago, right? Your dad's been gone. 10 years with it. Yep. Yeah, that's amazing. And obviously, her father grew up in a different management style and a long time ago with different insulin and different technology and all that stuff. But does that freak you out? Like, does it seem more real? Like my son thought he could play professional baseball because he knew a pro baseball player, it made it feel more realistic. So does it feel more omnipresent? Because you know, somebody who went through this?
Sarah 37:08
I think it's, it's fair to say the kidney thing actually does not scare me because it's so unlikely to happen to Reagan, and that's not according to me, that's according to her endocrinologist. So we rely heavily on their their opinion, but I do fear for her vision. And Megan, I know your dad has tunnel vision essentially at this point. That that does concern me I think because I had I was farsighted nears, I was nearsighted. I had LASIK. But I think so to me, that seems more real because I've experienced bad vision. And that that definitely scares me and then her teeth, because she ends up eating things in the middle of the night.
Scott Benner 37:51
Oh, yeah, it was. So I'm like, where's this going? Though, so you can just swish with water afterwards.
Sarah 37:57
I know that that's easier to do when you're not half asleep.
Megan 38:03
She's the daughter of a dentist. And when
Scott Benner 38:07
you're a dentist, your husband is no my dad, your dad is your daughter of a dentist. So I was like, Oh, okay. Yeah, obviously, you have to tell you, I don't know Dentistry has gone really weird in the last 10 years. Like, I feel like I'm at an integrative doctor now. And they're, they're like, let me see your tonsils. I was like, just stick to the teeth. Run. To new doctors, amazing doctor, actually, in your lane man is the best. I've never had such a good dentist in my entire life. My dentist before this was 100% doing math. So it was just I used to see a guy who had set three patients up in three different rooms. And he'd ungloved and glove and run from room to room and work on you like that. Yeah. And once in a while, but who
Sarah 38:51
is he that that's not a patriot patient centric?
Scott Benner 38:55
No, no. Once he left the room to go look at a Corvette. He was thinking of buying ice, I swear to God, that actually happened to me.
Sarah 39:03
The bar is low Scott, anything better than that? Seems like
Scott Benner 39:06
we've upgraded that the guy now is really good. Actually. He's just very interested in like a more of a whole approach. And he just, the truth is, is that I know about, I figured out I was anemic because of my dentist, who looked at me and said, Hey, you're not okay. But he thought I had type two diabetes at the time. But I was like, I don't have type two diabetes. Like I would know the signs. I thought to myself, like if I don't know the signs of diabetes, we're all in trouble. So I'm like, It's not me. It's not that but it still made me go to the doctor.
Sarah 39:42
I will say my dad did diagnose high blood sugar, high blood pressure. And one of his patients they were their gums bled a lot during a cleaning for no discernible reason. And he said, You know, I've got a blood pressure cuff over here. Do you care if I take your blood pressure and she was like 190 over one already Wow. And he said, You need this work, but I'm unwilling to work on you until you go see a cardiologist. And she came back like two months later and she said, my cardiologist told me to thank you for saving my life. Yeah. See? And so yeah, dentists, you never know.
Scott Benner 40:17
How do you two girls know each other? Like it sounds like you've known each other forever.
Megan 40:21
We were about a we've been? Sorry. Yeah. No, when as soon as I moved to Knoxville, Sarah and I met at church. And we grew up in the youth group together and sleepovers. And our parents, our friends. And now we both work at the same institution. And we've been neighbors or close to neighbors regularly throughout our 34, five years, four or five years of friendship. Wow,
Scott Benner 40:46
did it? Are you do you do similar jobs on purpose? Like when you were growing up? Were you like, one day? I'm gonna do this. And you guys were like, no, like, how does that happen?
Sarah 40:55
I wouldn't say we do similar jobs. Now.
Unknown Speaker 40:57
What what do you Okay?
Sarah 40:58
He's in a teaching capacity. And I'm, I'm we work in higher education. I work in the finance end of things. Oh, so yeah, we just happen to work at the same place
Scott Benner 41:08
when I call the College and I'm like, You're killing me? Why are you taking all my money? Are you the one that takes that phone call?
Megan 41:14
No, sir. We'll take that one. We'll take that one.
Sarah 41:17
I don't know you, Scott, who I'm so sorry. I do not know you. It's worth
Scott Benner 41:24
it's worth it. It's worth it. I don't know the one who just got a job. And I will say, off the payroll. Thank you. Well, I almost I think we're covering a couple of things. So. But yeah, you moved. And
Sarah 41:39
honestly, if Scott, if I could tell you the reason I applied to the University was for the health insurance.
Scott Benner 41:46
Oh, no, kidding. So you haven't been there that long.
Sarah 41:49
I've only been there about three years. Megan's been there for how long? 17 years,
Megan 41:54
- He gets 20 this year. And I remember my parents telling me, you need to make sure that you have good health insurance, because of dad situation, and how important it was to work for an organization that would provide that for you,
Scott Benner 42:10
because we're gonna come harvest. They also knew they were going to harvest your organs later. So they wouldn't
Sarah 42:17
let that pass down early.
Scott Benner 42:19
Oh, well, that's interesting. Yeah, I, I mean, I can tell you this, that never once my son's a very math minded, but it's a weird mix. Like he's has a quantitative econ degree. But you wouldn't think of him as like a math person, if you met him in his regular life. He just has that kind of part of his brain that does that he's a very weird mix of an athlete and a math person, which is I don't think it's something you see very frequently. I do think his degree helped him get the job that he has, but for none of the reasons that you would hope while you send your child off to it's because somebody in a hiring position, looked at a resume, and my son reminded him of himself when he was younger. And he went to a quality school. And so whatever that means, like seriously, I think what it just means is I paid more money. And and and the guy was like, hey, we'll give this guy a chance. It's just, I don't know, if, as a person who pays for it, I don't like it. Makes me very unhappy.
Sarah 43:20
I feel you because I've got a junior in high school. She's we're about to leap into higher ed on a personal level. So yeah,
Scott Benner 43:27
when Arden told me, art my, my daughter, Megan was between going, she was either going to go a pre law route, or go to fashion school to learn how to design clothing. And I told her, I wanted her to do whatever would make her happy. But I was voting for the cheaper of the two options actually, like privately in my mind. I was like, I don't think I want her to be a lawyer. And my wife's like, why I'm like, it sounds more expensive.
Sarah 43:53
I'll tell you this, my junior has no idea what she wants to do, nor where she wants to do it. At the moment. We have visited eight colleges, and at this moment, she's going to university where I work. Yeah, cuz I get half off tuition.
Scott Benner 44:05
I was gonna say, I know a kid that went to Princeton for free and his and her parents. Her father did maintenance at that school for two decades, the set in the hopes that one of his kids would be able to get school and one of them did. Like, yeah, like a robotics thing too. So like one of those like creepy smart kids. And but okay, so Megan, just would you tell me just if you comfortable like what do you teach? I teach
Megan 44:34
communication. Oh,
Scott Benner 44:36
lovely. How do you do that? How do you take somebody who doesn't have the skill and give it to them? You just give them the office side of the work. What do you do? First
Megan 44:45
of all, I don't give anything you earn it, okay. And I teach public speaking. So we talk about delivery and content and how to develop an outline and use sources and then we talk about the presentation aspect of it. Regarding your oral verbal output, as well as visual aids, if that's a part of it,
Scott Benner 45:08
does that help people in a business setting mostly or what other applications does it have?
Megan 45:14
It has an application and I would argue any field that you go into, because communication overlays all fields in some level. Yeah. How am I doing? You're doing well, you're quite conversational Scott.
Scott Benner 45:27
Would you imagine Sarah right now she was like, Can I be honest?
Megan 45:31
She would really be when we get off when we get off the podcast, people listen
Scott Benner 45:36
to this. I have notes. Now. So I, the way I do it, Megan, is that I'd like to know as little about the people I'm talking to as possible when I start, and I just follow where my interest goes. And that way, if I'm interested, then hopefully everybody else will be as well. I just find that reading bullet pointed questions. Sounds like you're reading bullet pointed questions, even when I speak in public. So I think Meghan would be impressed by this. I have spoken to up to 600 people in a room. And that is impressive. I have no nerves about it. There's something incredibly wrong with me. Because I mean, like, psychologically, I'm broken a little bit because everyone else is like, there's so many people in there. I'm like, I know.
Sarah 46:18
I can't wait depends on, you're motivated, because you have something to share that you're excited about, then, then why would that be a problem?
Scott Benner 46:26
I have to tell you, Sarah, I think if you put me on a stage right now and wrote three disconnected words together and said, Scott, please make these three words into a conversation. I'd be like, that sounds great. I don't know if I've ever told him to try to be fast, because I don't think I might have said this before on the podcast. But I think I was in eighth or ninth grade, Michigan, and my teacher said one day, you can get 50 Bonus points if you can come up in front of the classroom and speak for a full minute without saying, um, and I was like, Oh, I'm gonna get 50 bonus points. So that's the first thing I thought this is obvious. I watched a couple people do it. First one, one poor girl. I still remember I don't know her name. But she stood up there. And he said, Okay, go and she said was like, Oh, you're done. But I got up there. And I don't know what I said. But after a minute, he goes, like, you're finished. And I was like, I keep going if you want. And he's like, go ahead. So I went a couple more minutes. And it like three or four minutes. He's like, okay, just stop. And he sat me down. I don't know what that is. Like, I'm not a person who feels like, I'm not a million. I guess I I am comfortable in my own skin. And I have clear, yeah. And I have some, like, unreasonable level of I believe in myself for reasons I don't even understand. I don't think they're legitimate. Yeah, I just I would love to do that. Like I love doing this. Very, very much.
Megan 47:53
This is a version of public speaking what you're doing right now, podcasting? Yes.
Scott Benner 47:57
It's interesting, too, because it's hard. Like, you and I are looking at each other. But I don't normally look at people. Like I interviewed. I interviewed a 40 year old woman today. And we started off. And it was just a very, like, basic kind of conversation. And by the time we were done, she told me that she's a functioning alcoholic. She told me everything about our life. We picked apart drug use at her workplace loot with other people. And by the time it was over, I was like, that was really interesting. Like, because I have heard, and I always assume people lie to me that I've heard that there's like a massive amount of like it. She works in a restaurant. And I've always heard that like in restaurants and orgy like sex, drugs, alcohol, like behind the scenes. And I asked Anytime somebody's in a restaurant, nobody comes clean on it. And she was like, yeah, absolutely. And so before you knew it, we were talking about like, what's the difference between somebody being prescribed Adderall and your cook doing a bumper Coke, like, like, like, is there and we're having this big conversation about bizarre things. And I got done. And I thought she came on to talk about none of that. And I was like, so proud of myself. And it was so like, it was like, This is great. And she was lovely. And it was really, it was a really neat conversation. But anyway, so you can grade me at the end. Just a letter. I don't think you want me to grade you all I do. I would love to hear what's wrong with what I'm doing. And then I would like like, I would make these little notes like I was taking down what you're saying and I'd be writing you she was wrong about that. I would be so bizarre. Okay, so you guys have this weird relationship, meaning you've been together for a long time. Is it a little like you're married or you're not that close? Didn't they mean? Like, do you have that? Like,
Megan 49:40
it's not like that. I just think that it does not matter how long in between times that we see each other? It is just pick up exactly where you left off. Like it's just it's like a sibling almost. Yeah, I've had I've I don't know Sarah, how would you describe?
Sarah 49:57
Yeah, I worried a little bit about this because we do have Probably more than we realize nonverbal communication, like I can, you can tell me a whole lot just by with one glance. And I can tell you a whole lot with one glance. And I worried a little bit about that. But we both behaved ourselves. And then I want, I also worried that it might be a little Abbott and Costello, but we've managed to behave
Scott Benner 50:19
better. First yet. Yes. So you guys, you just know each other. So well, you don't need to say a lot. And by the way, Meghan, I've had, there's two people in the world that I have felt that way about, like it somehow. I mean, people don't understand when you're younger, but you'll look up one day and not see a close friend for five years. And it's very strange, and they don't live 20 minutes from me, you know, and then you bump into them again. And whatever that thing is, it just feels exactly the same as last time, but I don't I only have it with a couple of people. And so you guys have that?
Megan 50:49
Oh, yeah. I think when you've shared the stuff that we've shared, you know, just sleepovers and just the depth and the length. You get pretty trusting of one another.
Sarah 51:02
I think faith has played a large part in that. We we grew up together in the same church. And and while that's nice, I think I feel like we both have our faith has developed along the same
Scott Benner 51:17
arc, you hadn't you had things in common when you first met. So you can yes, you can at least be comfortable in those things then, but then you learn about each other. And you stake I guess, not just comfortable that you grew, you grew close to after that. Yeah. And I
Sarah 51:31
would argue that our parents are both part of the village that raised us. So it wasn't just my parents saying, hey, maybe you shouldn't, it was also MEGAN'S MOM, saying, Hey, that was really great. I'm really proud of you. Stuff like that. And that meant, that meant a lot. To me. That meant almost as much as coming from my parents mouse. So absolutely.
Scott Benner 51:57
So I'm gonna ask both you this question. Have either of you ever been in your home with your parents when the other one brought somebody around? And you're like, Oh, that's not the right person for them. Have anybody has anybody ever vetoed like a boyfriend girlfriend? Like, like dating situation for each other? Like, have you ever looked at Meghan and thought, not him? And told and told her? Or do you let it play out? Let's just ask the question that way. If you've ever had that thought, are there things you wouldn't say? Megan has a thought.
Megan 52:25
I have a thought from her college. But I'm not gonna go into details. But I remember thinking, this one's not going to last. I think she probably knows who I mean. Yes. Like, I don't know. She will see what she says about me. I've never had that thought.
Sarah 52:42
I mean, I trust Megan's judgment. So you know, if she feels like, I guess there probably been a handful of times I thought, Well, I'm sure he's fun right now.
Megan 52:57
Dear, yeah, I'm
Sarah 52:58
so glad I'm so grateful that it's never turned into because we do have another mutual friend that we all were shaking our heads and thinking, Oh, no. And it happened anyway. And
Scott Benner 53:12
it's a weird feeling. I remember growing up in a situation where a guy was getting married, and we all looked at each other and said, We should do something right. And no one did anything. And I'm going to tell you, like, the girl was a horror, okay? Like, like a real heart. And now 30 years later, they're they've been married forever. And they've got a big pile of kids. And I just thought, thank God, we didn't do that.
Sarah 53:38
And I think that's what that's what I'm saying is, you know, even I don't I don't have to I don't have to agree. Right. It's her life. She gets to live it the way she wants to. Yeah, I
Scott Benner 53:48
just didn't know if you guys were so close that you you knew things where you're like, don't do that.
Sarah 53:53
Well, I yeah, I trust your judgment. Yeah, that's,
Megan 53:57
I am so glad that you and Jason are together. It's precious. It's precious. Sarah got a good one. Or Jason got a good one.
Scott Benner 54:07
I have to say I don't usually get to see people's I don't get to say things like this. But Sarah you look like you were adorable when you were 19.
Megan 54:14
Oh, yeah, exactly the same. She looks exactly the same. A stunner. Oh, yeah.
Scott Benner 54:20
I just I just thought I imagined I don't know. I imagined Sarah like a skirt dance for some reason.
Megan 54:28
Oh, I'm picturing it now.
Sarah 54:31
It was khaki. It was a khaki. So I got you know, wore a white shirt with it.
Scott Benner 54:36
It's pretty much Cobell. Yeah. That's how you look in my mind. I'm being serious. It's hilarious. All right, so So you guys are you have two completely different perspectives on diabetes? Have either of you taken anything from the other one? Even though that your experiences are so different? It's Megan's father's a long time ago and Sarah's kids younger like it I guess. Megan like my question. You would be as Do you have any different insight about your dad's life watching this happen in front of you? Has it helped you like close any loops or anything like that?
Megan 55:10
My dad is just a trooper. And so as my mom, I cannot talk about my dad without talking about my mom's sainthood for being one of the reasons that my dad has lived this long, in my opinion, because she is a saint, what she cooked for all of us growing up keeping us on a schedule, so that I didn't realize that not everybody eats on a schedule, like our family does, because of dads diabetes, not that that's what we always talked about. But that's that was just how dad could manage best. And so we have built our schedule so much around that. So I don't know if that answers your question. But that's what's coming to mind is that I have to acknowledge how my parents are such a team. And in terms of managing my dad's diabetes, yeah.
Scott Benner 56:03
I mean, it's a great answer. I don't know if it answers the question, but I appreciate knowing it. I was just wondering if, if Sarah and her family have, if you've witnessed them do something with diabetes, it's made you think like, oh, now I understand or if you like, already had that full understand? Does that make sense? You're looking at me like, I'm not being clear. I think I just went down to a B minus. Just
Megan 56:26
definitely, maybe, maybe see, no, I guess I don't know. I just admire Regan and Sarah and Jason and all that they're doing to an her sister, helping her through it. So maybe he just got a daily basis. So I'm just so proud and supportive.
Scott Benner 56:43
I was gonna say, maybe you have those feelings, because you know, what, what's happening on her sites? But Sarah, you picked up differently? Yeah, got that. Right.
Sarah 56:53
Yeah, it's helpful to know what living with a type one as a kid, what that what that means. And like maybe what I need to be as a mom looking out for. So I need to make sure that Ellie doesn't feel her older sister does not feel like she is responsible for her sister, because she's not. I want to be sure that she's not got any anxiety about her sister's health. That's not her responsibility. I don't want her to grow up too quickly. Because of this, already got one kid who's, who's arguably growing up too quick, too fast, because of the vast amount of responses due to a vast amount of responsibility. I do see you Megan, as someone that I could say, you know, what do you think you might be going on here with Ellie? And if she had anxiety over something, I would send her my children call her aunt Megan. So I would say, you know, maybe, maybe you need to sit down with that Megan, and have a conversation with her. I know, she knows what's what. Yeah.
Scott Benner 57:59
It's just it's very interesting, because it's two different time periods. It's two different perspectives. And yet, I can see how it lens back and forth between the two of you.
Sarah 58:09
It is funny how one exception, all the type ones that we have are like little community with there are all on the tandem Tesla next to so it's nice to have resources. So like if you're running short on sites, maybe I call up the fields. Sorry. And then, you know, maybe a reservoir were shorter reservoir,
Scott Benner 58:34
or you guys have like you're a little swapmeet going? Yes.
Megan 58:38
Isn't it all happen? Yeah.
Scott Benner 58:39
But isn't it also interesting that you're all on the same pumps? Probably because the doctor in that area leans towards a certain pump?
Sarah 58:45
I wouldn't say that at all. No, we trailed the Omni pod and the tandem. You know, I don't know how your dad ended up on that. Oh, no, I do too. Because he's on Medicare.
Megan 58:55
I really don't know. I just know, he's, he's tried like the the Libra. But that didn't end up being what he chose. So he's on Dexcom and tandem. Oh,
Scott Benner 59:05
is your dad doing an algorithm to?
Megan 59:07
I have no idea. Yes.
Sarah 59:08
I know this because I've helped them with it. And, and we've talked to Meg and I've talked about this like if if your mom got hit by a bus tomorrow, you you would end up taking care of your dad. You know, and and I know you know this but hear me say like, I will spend however much time needs to be spent with you to make sure that your dad is okay and that you're comfortable. So I'm caring for him because I know that that is something that you've probably thought about I know you've discussed it with your mom but that is something I have thought about.
Scott Benner 59:40
Well as sweet as that is before Megan answers you I just want to say that's an empty gesture Megan because she's got all that like type a pent up inside of her. She's dying to put it on somebody. She's gonna push. She's gonna push your mom in front of that bus. Okay, just
Sarah 59:58
it's so funny that you say to Scott Because I was I'm in my churches choir, and all of a sudden I heard someone's pump, making the pump sounds and I'm like, who's high? And
Scott Benner 1:00:10
my knowledge.
Sarah 1:00:12
It's me. And I was like, Oh, do you need a glass of water? I mean, we're in front of God and everybody. And he said, Yeah, I can use a glass of water. And I was like, I'm your girl. I'll be right back. And then he showed me, he was like, How did you know that? I said, my daughter's on the same line. And he's showing me his pump. And I looked down at it. And I'm like, Dan, do you? Do you mean to be an exercise mode? And he goes, What's that? And I was like, Oh, my gosh, I'm going to take I know, I said, I'm going to take it off. Is that okay with you, and very long story short, I changed two settings for him. He now understands more about how the pump works, but I can't tell if someone just didn't. The CDE didn't show him how it was supposed to work or not. But he he was telling me I cannot eat anything without spiking really hard. And I said, you don't have to live that way. Yeah. Let's talk about this. And I've not gotten him on the podcast just yet. He's about 65 or so years old, and he can be a little technologically challenged. But that's the next step is to get him on the podcast. Not
Scott Benner 1:01:19
only is that nice for him, but I think it's fantastic for you. Because I imagine you coming home and trying to slyly drop into conversation around your daughter how you were helpful to another person? And how maybe she should listen again.
Sarah 1:01:32
She knows Dan, they're friends. Now. We've traded supplies with him at this point. So yeah.
Scott Benner 1:01:38
So Sarah, I have a question that I would ask both of you, except Megan's not gonna have an answer for it. So you listen to the podcast? I do. Okay. And it's been valuable to you, and you're coming on to add your story to it, which is terrific. answer a question for me, if you have an answer, okay. Knowing that I have no religious background what at all? And that I don't go to church, and that if you pressed me on whether or not there was a God, I'd probably tell you, I don't think there is and like all this, why do I have such a following of religiously minded people? Because I do. I can't figure it out. 100%?
Sarah 1:02:11
I think because you're willing to concede that you don't know at all. And I think like you just don't know what you don't know. And being vulnerable, like that is appealing to those who have faith, because we too, have to acknowledge that we don't know it all.
Scott Benner 1:02:28
Okay. That's, that's really, it's really, I'm like, Megan, just because you wouldn't know this. The podcast has an incredible following in the in the Mormon community, for example. And it just, it started to become incredibly obvious. And then it I was like, I don't understand, like, what did I do? Or say that would have done that? And now, you ladies and other things that I've heard from other places, and I'm like, I don't know. And my wife's like, this is ridiculous. My wife says, they don't know you. I want to tell you a story. On Christmas Eve went to church with my wife when we were just married or dating. And we're sitting there. And I said to her, what, what's happening? And she said, oh, people are gonna go up and get communion for Christmas. And I was like, I would like to go. And she said, You can't take communion. And I was like, why? And she was, well, you're not Catholic. And I was like, Okay. And so I said, I really want to see what the cookie looks like. And she's like, it's a wafer, it's not a cookie. And we're having this very quiet conversation at midnight in church, and she's like, I'm gonna go take communion, you sit right here, and I was like, okay, and she got up to your communion. And then I got up and went right up behind her. So I was like, four or five people behind her. And I'm walking up. And now I'm feeling the pressure. Because by the way, I was in my 20s. I just want to say that now. And I'm feeling the pressure, because I don't I really just want to see what the wafer is. I'm just endlessly interested in what it is. But the guy is going to put it the guy, the priest is going to put it in my mouth. And so I'm like, What do I do? Because if I eat it, I'm never gonna see it. So like I copped it, like, you don't I mean, and I brought it back to the thing. And she's like, What did you do? And I said, I really just wanted to see the thing. And she's like, Well, yeah, but now you ate it. I'm like, No, I have it right here. And then she panicked. And she's like, You have to eat that right now. And I was like, I really just want to see it. I was like, I don't know why I can't look at it for a second. Eat it, not you. Well, I forget what we did with it if I'm being perfectly honest. But I think legally, I was supposed to burn it. I don't know exactly what they'll just joking. But so like I have like, that's it for me. Like I think that's the last time I've been in church. She did not bring me back after that. But so you just think it's that you just think it's that I'm willing to say like, I'm not sure about this, or there's no perfection here where that I would entertain a conversation about why it's no different for somebody to use a prescription drug from another thing. And I don't necessarily believe that I just, I'm just interested in the conversation. Like I just I just want to know what people think. So that's it. Hmm, I'm gonna Okay, thank you. And I appreciate that.
Sarah 1:05:01
I mean, what do you think? Again? i That's kind of I think, you know,
Megan 1:05:06
I think your curiosity is quite inviting. And people are drawn to that. I'm not sure if it has anything to do with religion or faith, or lack thereof.
Sarah 1:05:17
I don't know, it's nice to hear someone have a conversation without using vulgar words, or making double entendre theatre or you know,
Scott Benner 1:05:27
but I do a little bit of that sometimes. It's not all the time,
Sarah 1:05:31
yes, I'm clutching my pearls.
Scott Benner 1:05:34
I've done that people have said things that are funny. And I'm like, oh, that means this too. But it's just it's very interesting, because I don't know, like, I'm, I'm kind of flattered by it. And happy for it. Because I don't want to, like, the worst thing that I can imagine is doing is that the information is here that you need and would be helpful to you or the or the camaraderie is here that would be helpful to you or the community or whatever it ends up being, and that somehow, I ended up being the gatekeeper that tells you no, you can't come in here, because I've done something that is so egregious to you, like, I don't want to be that, like I don't sanitize the show. But I also don't want to eliminate the possibility for someone to come to it. And I'm so far I've been really happy that the way it's being received all over. But I don't know, it's just there were such an influx at one point from a couple of different like religious like centers, I guess in the country, that I was really like, I
Sarah 1:06:32
wonder if like maybe they had like a maybe a JDRF conference.
Scott Benner 1:06:38
So I'm glad I this is why I brought it up to see where you would get to what I the only answer I've ever gotten from a person in the Mormon faith is that they're they have a very community based situation there. So people start getting type one diabetes, and they say, Hey, I was listening this podcast that really helped. And then I guess it helps them and then I probably get the goodwill from that as it goes on. But anyway, it's just if you knew me, personally, I'm not trying to say that, like when I leave here, I have somebody tied up in another room, or something weird like that, like I'm a pretty reasonably normal person. But I've just it's weird that it's me. You don't know that. But I know that. You know, I'm saying,
Sarah 1:07:16
I see I see it through the lens of faith. God's using you whether or not you believe in Him. He is using you to help others. And and if this is the reason that Arden was diagnosed with type one, then then maybe maybe this was part of God's plan for your life and hers. Oh, my God, she
Scott Benner 1:07:38
would hate that if she heard that. Way, there's already three people in my house using the same coin, right? I mean, no, no, no, it's in the end. It's really just, it's the extra words around the conversation. No matter what perspective you come from, you're saying the same thing, which is, you know, if it happened to this person, and this person picked up this mantle and did something with it, then that's, that's good, because more goods coming from it than bad. And I appreciate that very much. So. Okay. Thank you. I appreciate it. All right. So is there anything I didn't ask you that I should have?
Sarah 1:08:11
I don't know. There's plenty more to say.
Scott Benner 1:08:15
Is that a dog? It's a huge Yes. This is Travie? Oh, of course,
Sarah 1:08:20
come here. Let's see. I know, I'm delicious.
Megan 1:08:25
I just want to put a plug in I know, this is not the purpose of your podcasts. But like for organ donation. Yeah, please. Because it's, it's worth it. And it yes, it takes six or eight weeks to recover from a kidney donation, but medical stuff is getting better. And recovery times are more manageable. So you know, as much as I hope that no diabetics ever need to have to go through it. If you do, it'll be okay. Like, there are no side effects for me on this side of donating.
Sarah 1:09:00
Megan, correct me if I'm wrong. But my understanding about organ donation is that if you have donated a kidney, for example, and something happens to your remaining kidney, you are put at the top of the list. You're not put on some waitlist, like
Scott Benner 1:09:16
interesting. Is that true? Like if that's how it is, you know?
Megan 1:09:19
Yeah, I don't know for sure. But I think to remember something I do know that if I was unable to give to my dad that I could have given to someone else and my dad would have been moved to the top of the list, because I gave here and
Sarah 1:09:33
give me a change like that. I've heard that. Yes, that's well, that's
Scott Benner 1:09:36
interesting. So if you weren't a match for your father, they could have taken your donation given to somebody else and that would have accelerated your dad's
Megan 1:09:44
spot at the top of the list. Yeah.
Scott Benner 1:09:45
How about that? That kind of makes sense. That's that's like a twofer. One.
Sarah 1:09:49
Yeah, there are other situations where they wait to trade. It's a straight trade. How do you mean? So? Megan would donate to a stranger and that stranger person would donate to her dad. Oh, that makes sense, too. So it's a straight trade. That's super people who have time who have a certain level of functionality. So I think it's like that 15 to 20% range. I don't know if you remember that or not Megan. But that's that that range will get you on the list. Yes. Still not on dialysis. And so when you're in kind of that magical 5% range there, that's when they can you have time?
Scott Benner 1:10:26
Yeah. Your dad's on that cocktail of anti rejection meds? Yes, he makes out okay with all that.
Megan 1:10:34
Yeah. It's just part of the process. Like you just have to do it. So every day at 9am and 9pm. The Adele alarm goes off, and we say data time to take your pills. So he knows that it's everybody in our family knows that. Like, it's just pill time.
Scott Benner 1:10:52
Is the Dell alarm, Adele singing a song? What song? Hello? Oh, okay. I saw Delon concert. She was terrific. Oh, jealous. Yeah, it was really? It took my wife for her birthday a few years ago.
Sarah 1:11:07
It's a great present. Yeah,
Megan 1:11:09
that is a great present. Hint, hint. Jason.
Sarah 1:11:13
I remember Megan, you and I were gonna go to Oprah together. Do you remember that? Yes. Oprah she had the nerve. Wire.
Scott Benner 1:11:19
Oh, when she did Wait, when Oprah was doing those tours where she was? I don't know what happens with those tours. No,
Sarah 1:11:24
no, no, we were gonna fly out to Chicago to see the TV show a taping. Yeah. Girls trap.
Scott Benner 1:11:33
Just wanted to leave home, I see what's going on. Tried to get out of there for a couple of minutes. That is
Sarah 1:11:39
anything I didn't get to talk about today, Scott was was JDRF the importance of being involved if that's something that is attainable for you, or if they have a chapter that's close to you, not everyone is has the same access that I've got that I happen to sit on the board here locally. And it's it's really quite rewarding. I would encourage anyone who has had any sort of curiosity about JDRF, if you've not looked into it, please do. I do know that there are no small number of adults who are angry at JDRF. Because of the five years of cure, 10 years of cure, and honestly, between the three of us, they're not wrong. Data f should never have been promising things that they couldn't follow through on and I don't blame folks, but JDRF has changed their messaging. And Dexcom is a direct result of JDRF funds and influence. And so are all the algorithms that are out now they fully back all of them. They don't just they're not just looking for cure a cure. But obviously, they want to be out of a job. But they're also pushing to improve the lives of type ones. And And coincidentally, now type twos, but I'm hearing about a lot of type twos ending up on Dexcom, for example, or are using long acting like trust Seba,
Scott Benner 1:12:59
I think you're gonna see a lot of tight tubes using glucose sensing technology. And it's going to give them a better idea of how their food is impacting their blood sugar's and what they can do to, to keep the spikes away. So I think that's right here, you just need, I think the first steps actually happening where Medicare is going to cover it. It's not right, like they're trying to get it covered for Medicare first type two, which is the that's basically the that's the door opening for the other, the other insurance companies to kind of follow suit. So I think that's going to be for certain, and I have had more than a handful of type twos on the show, who require insulin and whose lives are basically, you know, that of a person with type one at this point. And they talked about like massive improvements from just understanding how to use insulin and how food impacts them. So yeah, I absolutely agree. I raised a lot of money for JDRF when my daughter was first born, are first diagnosed.
Sarah 1:13:53
diagnosed. Yeah, that's pretty common.
Scott Benner 1:13:55
And that one day, I was like, I think I could that's actually that's what my that's how i That's why I started my blog at first, because I raised money for the JDRF. And they raised something like, it was like $1,500. And I thought I put all this work in, I only raise $1,500 and piss me off. So it's like, how could I have reached more people? And I started a blog. And I started telling people about diabetes. And then at the end, I was like, you know, here, you could support this. And then it kind of grew from there over the years. But no, thank
Megan 1:14:24
you for doing that.
Sarah 1:14:25
Yeah, thank you. I didn't realize that you had got kind of gotten your start that way. That's that's really is pretty, pretty nice.
Scott Benner 1:14:31
I think we raised $60,000 By the time it was all said and done. I'm very annoying, so it's easy for me to get money from people. That's great. Yeah. Having said that, please go to the sponsor links if you're listening and click on them if you need this stuff. Yeah, the money's not gonna go to the JDRF now I'm gonna send my kids to college with it. So I'm sorry.
Sarah 1:14:50
We got to eat to Scott. You know
Scott Benner 1:14:52
why? Alright, here's my last question. Why is the food to college so bad?
Megan 1:14:57
I don't think it's not It's getting better. I mean, it is there are plenty of good options. I think students have demanded that over time and it's evolved. It's really getting good. Yeah,
Scott Benner 1:15:08
Arden needs more insulin at college than she does at home. And the food and when we visited, my son had had such a bad time at college with food that, like it was one of the things we were paying attention to that, you know, the first time around, we were just like food, they'll make them food. And then one day, my son sends me a piece of chicken, it's pink, and he goes, this is what I'm supposed to eat today. I'm like, Okay, so anyway, we paid more attention the second time around when we went around barn. And then Arden's places, like, it's beautiful. It's like a restaurant in there. It's so gorgeous. And we're like, this is gonna be better. And then she's bolusing. She's like that these carb counts are nowhere near right. She's like, she's like, I mean, I'm sure the carbs that they're listening are right, she's up at this foods hitting me so much harder than so it's basically like eating at an mid level restaurant, is what it's like being a college. And it's tough. It's tough when you're managing your insulin, especially when you're, you know, away from home. So anyway,
Sarah 1:16:05
I have found in our home, that the more food we make at our house, and if I shopped the perimeter of the grocery store in order to put together a meal, her the glycemic index seems to be a whole lot lower processed foods seem to hit like really, really hard. Yeah, they're
Scott Benner 1:16:23
difficult.
Sarah 1:16:24
Yeah. And I really, there's a skinnytaste is a blog online as well. And she has about five cookbooks out there. And all of her recipes are nutritionally counted. So I cook out of those two, I've got two of the cookbooks that are kind of like that's what I used. That's my go to, and I cook out of the weekly. Absolutely. And it makes a big difference. Plus, she can look at the the recipe and carb count herself. She does she doesn't have me going
Scott Benner 1:16:56
Hey, yeah. keeps you out of the loop again. It does.
Sarah 1:17:00
Keep me out of it.
Scott Benner 1:17:00
I'm sure in her when did you This is such a weird question. Did you clash with your mom?
Sarah 1:17:07
Oh, yeah. Yeah. How came from my raisin?
Scott Benner 1:17:13
How old do you think you'll be when you guys? Like how old were you when you were like, Oh, why am I hassling my mom like this? i Not yet.
Sarah 1:17:22
It goes in waves. Your brain.
Scott Benner 1:17:26
It's her fault for being wrong about everything. So it's not your fault.
Sarah 1:17:30
Crazy? No, she's not crazy. Maybe a little crazy. But But yeah, well, yeah, when I stopped like being a pain, and I was definitely a pill, probably, probably in college is when but let's be honest. Regan is sunshine and butterflies. And it's just that she has moments, hormonal moments, where she's very frowny, and says things in the tone of voice that makes me want to smack her mouth and which we had to warn her the other week or like, Hey, I don't think you need it this way. But your tone has got to change, right? And if we have to bring your attention to the smack on the mouth, we will. So please don't please don't make me do it. I don't want to do it. You're
Scott Benner 1:18:16
just far enough south or you're like, this is cool. We can totally do this.
Sarah 1:18:20
Definitely do it this way. But again, we don't you know, we try to roll with the punches and be like, okay, and I've told her on countless times. I don't think you meant that tone of voice. Can you please say that again? And so
Scott Benner 1:18:36
is it ever related to high blood sugars? I know you're not allowed to see, but I know
Sarah 1:18:39
right? I and that is the that's the rub is like what what is this? Is this a product of hormones? Or loved low blood sugar? Or do you just not get enough sleep last night? I mean, it's like things that can affect high blood sugar, blood sugar in general. You know, that book is about this thick? Yeah. Yeah.
Scott Benner 1:18:59
It's interesting. Well, it's what I've said in my life. I've said to art and I'm gonna look at your blood sugar. And if it's in range, you're in trouble. If there's a reason why this is happening, then okay, but
Sarah 1:19:12
no. Yeah, taking notes over here.
Scott Benner 1:19:15
All right. Well, you guys are terrific. I really appreciate you doing this. Thank you very much. It's it's really interesting how you met each other and how you've stayed together this long and how you've intersected so that's nice. You just share it.
Megan 1:19:27
Thank you for doing this, Scott. It's fun to participate. Yeah, I
Sarah 1:19:31
appreciate it very much.
Scott Benner 1:19:32
Hold on one second for me. Okay. Yeah.
I want to thank Sarah, I want to thank Megan I want to thank us met us med.com forward slash juice box or call 888-721-1514 I'm not reading this. I just know it 888-721-1514 Us med.com forward slash Juicebox Podcast that's dexcom.com forward slash juice box. I can do all of the ads right now for you off the top of my head one day, at the end of one of these episodes, I'm just going to do every one of them. One take. We'll see how well I can get through them. And I'm probably going to make some mistakes, but I'll give it a shot. Anyway, don't forget, the diabetes Pro Tip series has been remastered episode 1002 1026 or juicebox podcast.com en diabetes pro tip.com. Are you in the private Facebook group Juicebox Podcast? type one diabetes, go check it out. Thank you so much for listening. I could do this all day. I'm out of my mind. Thank you so much for listening. Sorry, I got all excited there. Hold on. I'm ready. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. You know if I didn't say that, with that voice, it would sound like this. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. You guys can vote and tell me which one I should do moving forward. Don't email me though. Do it in the private Facebook group. Don't Don't do it here. Please. I don't have the bandwidth to answer those emails. All right. I love you guys. Thanks for listening. I'll be back soon.
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