#1048 Flight Risk
Heather has child with type 1 diabetes and a few stories.
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Scott Benner 0:00
Hello friends, and welcome to episode 1048 of the Juicebox Podcast
I'm laughing a little because Rob is now doing the editing for the show and he takes notes. It's not important he leaves me notes about the episodes so I can remember what they're about while I'm recording these opens. The episodes here are his notes are just hilarious right here for this episode. Apparently I'm supposed to call it flight risk. This is Heather. She's 32. Her 11 year old son was diagnosed with type one in January of 2022. He had to be life flighted to a hospital. And we ended up talking about that. And her time in the military. Oh gosh, a horrible thing that happened to her when she gave birth to her second child. Anyway, I hope you enjoy it. 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 healthcare plan or becoming bold with insulin. I think it's worth mentioning that I the file name for this is the person's name and I put the word butthole in parentheses, so I don't remember why I did that. But let's go
this episode of the juice. Oh, you know what? I don't know who the hell this episode of The Juicebox Podcast is sponsored by homeless second I gotta open up a document here. That was embarrassing. I guess it doesn't need to be embarrassing. I could just take it out. But I think we all know I'm not going to do that. So looks like Omni pod episode 1048. And no. Are you did that? Did that one? Oh, what's tomorrow's date? Is this fun for you guys hearing how the podcast gets made because it's bore the hell out of me. October right. Yeah, don't oh, he wanted and yet, we just did that one. Okay, this episode of The Juicebox Podcast is sponsored by Omni pod makers of the Omni pod dash and Omni pod five. Learn more and get started today at Omni pod.com/juicebox. That's Omni pod.com/juicebox podcast is also sponsored today. By touched by type one touched by type one.org. Also find them on Facebook and Instagram. They're huge. Oh, their big event is coming up dancing for diabetes. I think there's still tickets available. If you're in the Orlando area. You do not want to miss it touched by type one.org. Alright guys, podcast here comes.
Heather 2:59
I am Heather. I am in Central Washington. My now 11 year old was diagnosed with type one last January. So we're just over a year in. I guess we can start with that son,
Scott Benner 3:16
daughter. Son, son. Yes. Was there any reason to think someone in the family was going to get an autoimmune issue?
Unknown Speaker 3:25
Absolutely not.
Scott Benner 3:27
Okay. So no one in the family has celiac or thyroid?
Unknown Speaker 3:32
We're aware of?
Scott Benner 3:33
Nothing. Nobody talks about?
Speaker 2 3:35
No. And we don't really see family a lot. They're all in North Carolina, where we're originally from.
Scott Benner 3:41
Is Is that why you're on their side of the of the century?
Speaker 2 3:46
Yes. Yes, it sure is. Oh, we gotta go. Well, yeah. Yeah, we first moved to Chicago or Northern Chicago. And we were there for 10 years. And we were like, we're not far away enough. So let's keep going.
Scott Benner 4:09
Chicago was too close. But what did they do take a train, but I happen to
Speaker 2 4:14
know they never even visited but it was still too close. Too close.
Scott Benner 4:17
That's excellent. All right. Okay, so no reason to think that there's going to be type one. What was the what was the onset? Like?
Speaker 2 4:26
Oh, gosh. So we just moved to central Washington. What years are now 23 So 2021 in July. And then I would say things started to get noticeably bad. At the beginning of January of 2022. And he was starting to get lethargic. He and it progressively got To where he had a failure to thrive, he wasn't getting up. He was laying down he had no desire to do anything. He was hungry but wasn't hungry. He was thirsty all the time. I didn't realize he was peeing all the time, because well, he's a 10 year old boy at the time. And like, I don't watch them use the bathroom. We were homeschooling. So he wasn't at school. And he was lazing around all day. And then it was like a battle. Remember, one afternoon, we got a text from a contractor that was doing some work that our house saying that they had been exposed to COVID. And they get tested positive, and he had been at our house. And we were like, Okay, well, maybe all of this is COVID. Of course, that seems silly. looking back in hindsight, but
Scott Benner 5:51
COVID doesn't make up, does it? It doesn't doesn't at
Speaker 2 5:55
all. But we didn't I didn't know about type one diabetes. I've only worked with people with type two. And I've never known anyone with type one that I'm aware of.
Scott Benner 6:07
Okay, what do you what do you mean, you work? You work with people with type two, how, where did you do that?
Speaker 2 6:12
I worked at a nursing home for about five and a half years. And I had several patients that I worked with with type two. Gotcha. But they had had it for years. And I just was the CNA that helped them like I didn't do their care plans or their treatments or anything like that. So I just didn't have the background knowledge of type one diabetes. tested negative for COVID. And then the next day, like, actually, I'm terrible at storytelling, and you're really good at it. So perfect. No just made me nervous.
Scott Benner 6:51
You feel like you feel like I'm judging you for how you're telling your story.
Speaker 2 6:55
No, I don't feel like you're judging me at all. I feel like I'm judging myself.
Scott Benner 6:59
Oh, don't do that. You're doing because I want to remember all of the pieces, just say the parts that come to you. I'll pick through the rest. So
Speaker 2 7:07
like the week prior, I noticed, like shortness of breath going up the stairs. I noticed, like a few days going into it like his neck was like pulling in with his breath. He was losing weight, but I just chalked it up to he's getting taller. But thinner is really active. You know, the things that we all do,
Scott Benner 7:33
even though you've never once seen another human being grown that grow that way.
Speaker 2 7:38
Well, I've never really seen a lot of kids I because you live in the word not? Well, because I just don't hang around a lot of kids. I don't know that I really like kids. No offense to everyone listening. By the way. I love my kids.
Scott Benner 7:52
You made that very clear. When you made sure to let us all know that you don't watch your kid pay. You were like, it's not like I watched them pay. I was like, Thank God she cleared that up. That I thought Oh God, should I start asking people that are watching children use the bathroom because maybe we can identify a lot of creepers that way you don't I mean,
Speaker 2 8:14
right? I met him and his brother have their own floor of the house and they have their own bathroom. And I just don't know when he's using the bathroom. Okay, so there's that. But I could just see the weakness happening. And then the next morning, he like collapses and the bathroom because he couldn't hold himself up anymore. And so it's snowing outside, we're in the hills. And I was like, we're gonna go to urgent care. But now we're gonna go to the emergency room. So I had my husband carry him down the stairs that were slippery. Put him in the truck. And I drove to the emergency room and on my way I called the hospital. And I was like, hey, like my son's in a lot of pain. He's almost unconscious. I'm bringing him in. And I need someone to meet me at the door with a wheelchair because I don't know that I can carry a dead weight of 80 pounds.
Scott Benner 9:17
Well, you're like one of those TV shows where they call from the rig and they're like, we're coming in and then you gave like, yeah, like this stuff. That's nice. Do you do I get that but do you know how old I am?
Speaker 2 9:27
I think you're about 50 Yeah, the
Scott Benner 9:30
answer is I'm so old. That the TV show that I pictured when I when I when I just had that thought. It's so old. I have to look it up because I don't remember what it is. And it was just when television color was looking good. All right, hold on, right. It was How old are you?
Unknown Speaker 9:54
I am 32
Scott Benner 9:56
You have no idea what I'm even thinking of then
Speaker 2 10:00
Hold on, I have to make sure what we're in 2023 Yeah, I'm 32 I'll be 33 this year.
Scott Benner 10:05
Yeah, I'm thinking of a show from the late 70s called emergency.
Speaker 2 10:10
Oh, I've seen that have you? And the only shows that I'll watch on TV are like medical shows, but I can't get into that one that you and your daughter love,
Scott Benner 10:21
Grey's Anatomy. My daughter Arden began wearing the Omnipod tubeless insulin pump on February 4 2009. That was 5093 days ago. Or another way to think of it 1697 pods ago. At that time, she was four years old. Hang out with me for a moment while I tell you more about the Omni pod Omni pod.com forward slash juice box. Today Arden is 18 and still wearing Omni pod back then there was one choice just one pot, but today you have a decision to make. Do you want the Omni pod five, the first and only tubeless automated insulin delivery system to integrate with the Dexcom G six, because if you do, it's available right now for people with type one diabetes ages two years and older. The Omni pod five is an algorithm based pump that features smart adjust technology. That means that the Omni pod five is adjusting insulin delivery based on your customized target glucose that's helping you to protect against high and low blood sugars, both day and night. Automatically. Both the Omni pod five and the Omni pod dash are waterproof, you can wear them while you're playing sports swimming in the shower, the bathtub, anywhere really. That kind of freedom. Coupled with tubeless a tubeless pump, you understand it's not connected to anything. The controller is not connected to the pod, the pod is not connected to anything, you're wearing it on the body tube loosely, no tubing to get caught on doorknobs or anywhere else that tubing with those other insulin pumps can get caught Omni pod.com forward slash juice box that's where you go to find out more, you may be eligible for a free 30 day trial of the Omni pod dash, you should check that out too. When you get to my link, Omni pod.com forward slash juice box. So if you're looking for an insulin pump that is tubeless waterproof, and automated. You're looking for the Omni pod five. If you want to do it on your own, and you're not looking for the automation, Omni pod dash for full safety risk information and free trial Terms and Conditions. Please also visit omnipod.com forward slash juicebox.
Unknown Speaker 12:42
Yeah, I can't get into it.
Scott Benner 12:44
I say something about Grey's Anatomy. I stopped watching for it. I stopped watching. They took an entire season to stand on the beach and bring back old characters as ghosts and I was like, Alright, that's enough. You crossed my line. That's weird. Yeah. Yeah. what it felt like was that the star wanted a year at the beach. That's what it felt like to me. They were they were like don't leave the show. What if we put you up in a beautiful beach house. And we did all the shooting on the beach. And she went alright, I'll do that. That's how it felt to me. Anyway, I'm done. rampart was the hospital name and emergency in the late 70s that I can actually remember from being a child watching that show. Not not the point in my mind. There's a guy with dark hair on like an old CB radio looking thing explaining the symptoms of your son as you're going to the hospital. That's how I see your story.
Speaker 2 13:36
Yeah, his he was having like stomach pains. I could see him gasping for breath. And it was it was really scary. I've never seen anything like it. I would like to not ever see anything like it again. And I 10 out of 10 don't recommend it for anyone. Yeah,
Scott Benner 13:57
your explanation of his neck heaving scared me.
Speaker 2 14:01
Oh, it scared me. Yeah. And it happened like overnight, like I could see it a little bit. But it wasn't that bad. He had had his COVID vaccine. So I was like, I mean, if it's COVID like they're not going to do anything for him. And then his shortness of breath, like kept increasing. And I was like, I kind of take them to the hospital. Yeah, no,
Scott Benner 14:21
I mean, good job walked into
Speaker 2 14:23
the hospital or I mean, I guess good job. He had a 12.9 a one C and the doctors were like, he's about 24 hours from a coma. Like Good job.
Scott Benner 14:35
Well, at least that Yeah, we didn't get there. Before that. I kept. I kept firing at Arden. I was like, Gee, she's really skinny ish, lethargic. She's sleeping all the time. But then she eats like crazy. But then she's a zombie. Yeah. And I was like she must be must be sick. Sick. I had a kid already. It kid was like five years old. I had been sick a number of times. It did never look like that and still Right, we were just sort of like, Yeah, she'll probably get over this. She'll probably get her. Yeah, right. I don't even know that you think about it that deeply. I think what the real truth is, I hate to say it like this, you're the real truth is that we have no expectation of children dying. Like, that's how good medical, that's how good medicine is now, because if it's a few 100 years ago, you were making five babies hoping to keep two of them. You know, so like, but nowadays, like we don't we have no expectation of something like the following a child. And so right. When it starts happening, you think, Oh, this will go away? Because that's what's happens. Right, but not your situation. Okay. You were in the hospital now. Did they meet you with a chair?
Speaker 2 15:40
Oh, they met me with a chair. And apparently they immediately smelt the what is it that sweet smell or whatever the smell is on his breath, and they took him back? Almost instantly. They took him back and I was still trying to register at the front desk.
Scott Benner 15:58
Yeah. Wow. So they knew right away? Yeah,
Speaker 2 16:02
I don't have a sense of smell. I haven't since I was 1718 years old when I worked in the nursing home. That place smelled bad.
Scott Benner 16:08
You don't have any sense of smell. It is coming
Speaker 2 16:12
back finally. Real but it's been 15 years. Yeah.
Scott Benner 16:16
All that because the PP you were like, well, I don't want to smell this anymore. You think your brain shut it off? Yeah, I
Speaker 2 16:21
don't think it was the pee pee part of it. I think it was the they were patients with C diff, which is an infection in your bowel. And it smells horrendous. I started when I was 17. And my body was like, the new count me out.
Scott Benner 16:39
Talk to you out of being able to smell. That seems not like a technical description, but it's very interesting. So you couldn't smell his breath one way or the other.
Speaker 2 16:47
I smelled it one time, but I didn't know what I was smelling. Because I've never smelled it before. And I never smelled it again after that.
Scott Benner 16:53
Yeah, kinda like sweet or metallicky or something like that. I think yeah, I
Unknown Speaker 16:58
think it's I don't remember.
Scott Benner 16:59
I think it's the ketones are smelling. Yeah. Yeah, probably. So what happened? I mean, he's that close. Does he go right in the ICU? Do you get to see them? Like, is it COVID time.
Speaker 2 17:12
So it is COVID time. But the problem is, is we're in Central Washington. So we have one hospital in our county, I think, or at least local to us. And they do not have any not one single pediatric specialist here in town. So they were able to know enough to get a slow insulin drip in him. And then they called Seattle Children's and I'm sure other facilities to try to get him into there. And we ended up being life flighted to Seattle Children's. And that was quite traumatizing. But they did let me in the room. They came in and told me that he had type one diabetes, I ran all of his tests and all of this and I just like fell to the ground crying. My husband was at home with my youngest son. So I was there by myself. And we only have one vehicle, because we've just been a one vehicle family because both my husband and I worked from home and we don't need a second vehicle. And I was like, how are they going to drive to Seattle when the vehicles here at the hospital? We don't have family here. We just moved. We don't know a lot of people. There was so many logistics, and it was quite stressful. We figured it out, though.
Scott Benner 18:32
Yeah. A very overwhelming life. Like they put him in. They put him in a helicopter.
Speaker 2 18:37
Yeah, they put us on an ambulance took us to the airport and put them in a helicopter at the airport and flew us over the mountains to Seattle.
Scott Benner 18:48
Wow. Did they stabilize him at all before they did that?
Speaker 2 18:52
He was in and out of consciousness and on the entire helicopter ride.
Scott Benner 18:56
Did he have any insulin for the ride?
Speaker 2 18:59
They did have a drip going in. But I don't know how much it was interesting. But he was in and out of consciousness for probably the first 24 to 36 hours.
Scott Benner 19:10
Wow. Wow. Yes. Crazy. Did he have any deficits afterwards?
Speaker 2 19:14
No, not that we have. Not that we found? No. All of his organs seem to be working like they are supposed to be.
Scott Benner 19:24
Well, that's super lucky. That's I mean, yeah. Did you know why in hindsight that they move him did they feel like they couldn't help him there?
Speaker 2 19:32
Oh, they could not help him. They're not at all like they would not admit him because they don't have pediatric specialist here. Like there's not a pediatric endocrinology in my town. I have to drive three hours to get there.
Scott Benner 19:44
Over a mountain. Well, we fired them. That's a whole nother story. Find out they pulled them out mountain people are drawn to.
Speaker 2 19:51
Yeah, and then now we go the opposite direction to Spokane. Yeah,
Scott Benner 19:55
okay, tell me a little I've two things before I want to move on. So tell me why you stopped I've seen the initial doctors,
Speaker 2 20:01
we saw them 30 days post diagnosis. And they were like, we have this technology, we have this technology. And we wait six months to get on this. And mind you, I've already started listening to the podcast at this point. So I was already, like, a few weeks into listening. And I was like, I don't know how I feel about that. But I'll humor you. And we'll see what happens. And we get the Dexcom. After some, it felt like fighting with the facility. And I was like, Alright, so my son is starting to develop disordered eating habits, like he's choosing not to eat because he doesn't want insulin injections. And I'm not having that, because I'm not going to have my 10 year old starting with disordered eating habits. And we want to pump and they were like, oh, we can't do that. And I was like, oh, no, we can I want to pop. And they were like, You can't do that until six months, we need to prove whatever it was like, No, you don't. We want to pump I need you to send in the prescription. Because if you say it's gonna take six months, then we need to start now because I'm already gonna have to fight with insurance. Yeah. And on the six month mark, if that's what you're saying, I want to put a pump on his arm. And they were like, No. And I was like, yes. Do it.
Scott Benner 21:23
And instead of having the fight, you went somewhere else?
Speaker 2 21:26
Well, no, they finally put the prescription in. Okay. And then they thought that because insurance denied it that we were just gonna let it go. And I was like, Absolutely not. So I paid for the first month out of pocket and they were pissed.
Scott Benner 21:39
Oh, so you showed up, like right away with the pump? Because you were like, just said, You didn't go back? No, because you were just like, send send in the script. And you know, six months from now we'll get our pump. But as soon as the script hit, you made it happen. 100% I wasn't playing like I'm with them. Yeah. And you went to a pump for cash until you could get it worked out with your insurance.
Speaker 2 21:57
Correct. And the insurance wanted a medical necessity letter and the doctor wouldn't give it until we went back for our six month appointment. So I fired them, called a different doctor. Let them know what we needed. And they're like, Oh, I'll write you a letter right now. Yeah, so they sent out a letter. And like, the next month it was covered, and it was no big deal.
Scott Benner 22:17
I'm gonna talk about this in a minute. But first, I want to tell you something. I guess I'm gonna start by asking you a question. How does? How does food taste to you? This is gonna seem like such a left turn. But how does it? How does food tastes do? Do you have like a strong feeling for how food tastes or not really?
Speaker 2 22:33
I don't? I think it's a really good question. It's something I've thought about a lot. Well, let me tell you something. I don't know if I taste food the same way everyone else does.
Scott Benner 22:42
Whether you should google it. If you smell okay, ready? Here it is tasting tasting is actually smelling. I know it is commonly thought that the flavor of food is experienced by the taste buds on the tongue. In fact, the mouth distinguishes only rudimentary information on sweetness, saltiness, sourness and bitterness. odour molecules from food. I guess that's odor, am I gonna? Yeah, I'm just like, I'm on an Australian website. Like why is that spelled wrong? odor molecules from food, rise to the olfactory epithelium, and supplement the information from the tongue with a much more sophisticated with much more sophisticated data. That's why food tastes bland when you have a head cold. Oh, no kidding. The olfactory epithelium is clogged with mucus and can't function properly. Better. health.vic.gov.
Speaker 2 23:33
I told several doctors this and none of them seem to be concerned.
Scott Benner 23:38
Hmm. Okay. And then that thought leads me into this thought which I'm going to wrap back around to what you were saying because Alright, so my kids have like, flown the coop. You know what I mean? Like Arden's gonna have to keep coming back when in college breaks, but Cole left, he's got a job. It's going well, I'm pretty sure we're never gonna see him again. And and, and that's not sure we're actually gonna go visit him in a week. But that but and Arden's a college, right. And she has long, her college is set up for it. Interestingly, she gets a very long break at the holidays. But then when she heads back, she just got another break for like six months. It's they do it in quarters. And anyway, not the point. Point is, I don't have anybody here to worry about and Kelly doesn't seem to like it when I worry about her. So after 51 years, and I mean this like sincerely not maybe every one of my 51 years, but you know, my parents had trouble being parents. So I parented my brothers and my parents that sometimes. And then my father left, and I was literally raised my brothers from the time I was 13. My middle brother was eight, my youngest brother was three, like my mom got up every morning and went to a job and didn't come back till five or six o'clock. So like, yeah, you know, I raised them as well as a 13 year old maybe could raise two kids Then I met my wife, she had some issues with her family, we got through those than we had kids. And then there was like two years narrow us, like, look at how great and then boom, diabetes. I really think there were like two good years in my life, I think around 2000 2001. And then, of course, the World Trade thing happened in the middle of my good time, so not particularly good. And anyway, and then I've been paying attention to Arden's health, and then learning more about Kelly's health, and then my sons, and you know what I forgot to do, Heather, take care of your health, I did forget to take care of myself. Yeah, I didn't pay any attention to myself. So there's like a decade in the middle of my life where my iron was low, where I just suffered. I just suffered through it. And it was terrible, right? So I figured that out. And then I'm like, okay, that's fine. Like, this is probably it, you know, but they laughed, and I was like, Ah, I really, like I spent so much time like, I don't know, playing Doctor House, and being like, you know, what I think this means, you know, I think this could be that, like, I mean, the way I figured out Cole's Hashimotos is insane. I found a symptom buried in an NIH article, like a symptom that never happens to anybody. And I was like, that's this, and then boom, thyroid medication is okay. So I thought, let me turn this on myself a little. And I made an appointment with Dr. Benito, Who's the doctor who's come on and talked about thyroid stuff here. And his Ardennes, integrative endocrinologist handles Ardens thyroid and actually is going to start handling Ardens diabetes as an adult. And does my kids thyroid and my wife's and all this stuff, right? So I sat down, and I made this comprehensive list of everything that's been wrong with me my whole life. Because I was like, let me see if there's overlap between what I see with the kids, right, because maybe we have things obviously going on similar. I make this comprehensive list and make an appointment. I go into Dr. Medina, his office on Saturday, and she's like, tell me, you know, she's like, you're here because and I said, I just, I have some things going on. I'm living with them. Okay. But I look at my body. And I think it's not functioning properly. Like it's, it's just not like, Heather, I don't eat very much food. I weigh more than I should. I, you know, I'm Yeah. When I was active, this is what my body looked like, when the podcast got really popular. And I just sit here in this chair, most of the day, it didn't change. This is what I look like. Like it just it's always this level of like, I mean, I guess it's alright, like that kind of thing. And so we went through everything. And here's why you want to get a good doctor, Dr. BENITO heard my concerns, and said, Here, go get a blood draw. This is what I'm going to test for. She tested for thyroid, even though I don't have any thyroid system symptoms. She's testing for low testosterone. She's testing for like, everything my iron, like things that you would like things that I was like, Why do you test for this? She goes, it supports this here. I'm like, okay, whatever, just go for it. And I And she's like, if you want you can try an injectable to like, lose some weight with too. And I was like, really? And she was sure why not? I was like, yeah, why not? Like, why am I wasting my life trying to find this perfect avenue to fix something? Like why not? Like you don't have that I don't drink I don't smoke. I don't get high. Like I? Why not? Why not inject something once a week to see if it helps me lose weight? Or see if my metabolism? Who the hell knows. But why am I just okay with this? I don't know. Well, the reason is, is that every doctor I've ever gone to in the past looks at me and goes, you're right. Yeah, it's convenient. I agree with them. Right? But I wouldn't if it was my kid. I'd be like, no, no, you're wrong. Keep looking. What? It's me. It's me. I'm like, yeah, he's probably okay. I mean, I get up in the morning. So anyway, I don't know what's about to happen to me. My blood test is literally just out now. But this this lady is going to aggressively address anything that she sees. And and I think, you know, coming when it comes to diabetes, like that's what you need, you know, anyway, yeah,
Speaker 2 29:29
I will say that last year, I was fighting with my own doctors for my own health. Because visibly, I am a thin, healthy abled body that doesn't have any issues. Well, they were wrong. They were very wrong. I fought them for like six months. I'm a veteran. So I go to the VA. That's just a pain in itself. In my current clinic because I'm at a satellite clinic, because we're so far away from civilization. But it took four to six months for them to finally draw full panels. Like I was asking, I was like, something's wrong in my thyroid. Something's wrong with this. Why am I doing the work for you? They finally drew and they're like, oh, no, your ferritin levels are low. And I was like, Oh, I feel like Scott. My ferritin was down to 5.2. The day I had my first iron infusion.
Scott Benner 30:30
Wow, how are you even walking? That's crazy.
Speaker 2 30:33
I wasn't. I wasn't walking. I was in bed. I would say 18 hours a day. Because my brain wasn't functioning. My body wasn't functioning. Sure. And I was like, something is wrong with me. No, you're fine. No, I'm not that they
Scott Benner 30:51
tried to tell you what they did. They try to give you the like, the like the old like, you're just, you know, sad, or you need to exercise or eat that they hit you with all that bullshit?
Speaker 2 31:01
Oh, yeah, of course. But I'm a personal trainer and a nutrition coach. Like, I know, I need to work out I know how to eat. I'm good. But I can't do it. Because I don't have the energy.
Scott Benner 31:10
Right? That's interesting. I can't get out of
Unknown Speaker 31:13
the bed.
Scott Benner 31:14
How many it was? How many? How many infusions? What did they give you? They give you injector for to give you the other one?
Speaker 2 31:21
I had to have injector for before? Thanksgiving last year? Okay. How long like a new person?
Scott Benner 31:29
Yeah. Would it take a couple months for you to feel better? Yeah, I would say probably the
Speaker 2 31:33
beginning of this year, middle of January, I really started to
Scott Benner 31:38
feel good. Here's the fun question. Did you have a heavy period before this?
Speaker 2 31:42
No, I have endometriosis. So I actually use a birth control that stops my period, so that I don't have period issues, and issues with endometriosis. So I don't even have a period.
Scott Benner 32:00
You don't have a period. So new. All right. I'm going to say something. All right, Dr. House, I want to give it to me, I want everybody to keep in mind that I'm borderlining on an idiot, I almost didn't graduate from high school, etc, etc, and so on and so forth. But you know, how they say like, Oh, that 10 years ago, it was the data is telling us that people with type one diabetes are frequently low on vitamin D. And now in the last couple of years, the data is like, you know, basically the population is low on vitamin D. And, okay, endometriosis isn't an autoimmune disease. But isn't it interesting that you can't keep your iron up? Yeah. How? How? And isn't it interesting that you can't keep your iron up and your kid has type one diabetes, and I can't keep my iron up? And my kid has type one diabetes?
Unknown Speaker 32:58
Maybe it's just a coincidence.
Scott Benner 33:01
Maybe it is. But why is it we're hearing so much about people on the podcast whose iron is super low, and they're walking around like zombies, and nobody wants to do anything for them. And then it's up to the person to fight to get this test. I'm telling you, a ferritin level should be part of should just be part of your blood draw when you get a blood draw every year. And if you're, if you're not getting your blood work done, and you have insurance, what are you doing? Just let them do it. You know? And then you look Oh, I
Unknown Speaker 33:30
do it annually? Yeah, of course.
Scott Benner 33:33
So your first and was five you beat me? I think my lowest was 11.
Speaker 2 33:39
I don't want to compete with that one. No, I don't want anyone to have that nonsense.
Scott Benner 33:44
Horrible brain fog, right.
Speaker 2 33:48
I was in school. What I was trying to do school, I had three classes I was in and I'm just trying to function and live my life. And I thought I was dying.
Scott Benner 33:57
And you have two kids. One of them has diabetes. You have to climb over a mountain to buy a gallon of milk.
Speaker 2 34:01
Yes, yeah. You should get a cow. Yeah. I would if my homeowner's association didn't say that. We can't have livestock.
Scott Benner 34:11
You haven't heard it yet on the podcast, but I there was about a week where I got like, enraptured with the idea of raising chickens. And one person was like, why don't you get a cow too? And I was like, what? I can't do that. What would I do with it? Well, I
Speaker 2 34:25
also want to get I think it's goats that they say they help clear the sagebrush off the side of the mountain that we live on. They help keep it like clean and safe from potential fires. Yeah, I want to get a goat. They won't let you know I can't have livestock. We have a perfect place for chickens and we can't have livestock.
Scott Benner 34:44
What if a couple of goats just got loose?
Speaker 2 34:47
I know, right? I've considered it. I'm just saying I've considered it. Old Man dog, Nick. It just sucks. So the President is right next door to our house.
Scott Benner 34:56
Yeah. Let me the goats out.
Speaker 2 34:58
I don't know old man. Dog pays a lot of attention to a lot of things that goes into the neighborhood and I just don't like it.
Scott Benner 35:04
Gotcha. Well, maybe his iron will get low and he won't be able to stand up and look out the window. Like really like, be life altering getting the the infusion, right.
Speaker 2 35:16
Oh 100% The like I'm back, obviously in school again this semester. And my ability is like a hundredfold different than it was last semester. I can focus I can concentrate i Life is just better. I was having shortness of breath. I was having chest pains. They sent me to the cardiologist. They did a CT scan. They did stress tests, they did echocardiograms, like they did everything was like, my heart is fine. Yeah, my lungs are fine. That's not the problem. Yeah, but you're having shortness of breath. Yeah, I am. But it's not because of my heart and my lungs.
Scott Benner 35:53
I think what they want to say is, yeah, but you're having shortness of breath. And the three days that we spent on shortness of breath in medical schools tells me to do this. Because we're just trying to stop you from dropping dead right now, we're not actually worried about why your shortness of breath, if it's not because of lung or heart issues, then you should go see a different doctor about that. And
Speaker 2 36:12
that's what I told them. I was like, I know I need to see a different doctor, send me to them. But again, as a veteran, all of the processes have to go through like this referral process. And there's hardly any specialists here in town. So my hematologist is an hour and a half away. Like it's a disaster.
Scott Benner 36:33
Yeah, that's interesting. Are you making any changes to your diet to try to keep your iron up? Or are you afraid your body's just gonna use it up and you'll be back in the same boat again,
Speaker 2 36:43
my diet is no different. I was eating red meat at least once a day prior to, like, I was eating my fair share of iron. And I don't know what was going on. So no, my diet hasn't changed. I've had my what was it three month check. And they said my iron levels were well above normal, they'll recheck again and three more months.
Scott Benner 37:06
Alright, so if, if if Dr. BENITO was here, she would tell you to take vitamin C.
Unknown Speaker 37:12
You know, I have that in my Amazon cart.
Scott Benner 37:16
Well, how long does it take to come over the mountain? Did they drop it from a parachute? Or how does it get over there? I mean, just a mail truck guy in the car. Yeah. It's not as exciting where you live as I'm imagining. Like in my, in my imagination. You live on the Yellowstone ranch.
Unknown Speaker 37:33
I do live in between lots of orchards.
Scott Benner 37:36
Oh, that's lovely. That's very nice. Okay, so get get the vibrancy. And take it. Keep your iron out.
Speaker 2 37:43
Yeah, I do. I actually I lied. I do. I did change a little bit. I do eat a bit more berries because of the vitamin C that they provide with. And I
Scott Benner 37:53
did tell people why you care about vitamin C, because your
Speaker 2 37:57
body absorbs iron better if you take vitamin C,
Scott Benner 38:00
right, exactly. How did you learn this? Um,
Speaker 2 38:05
well, I've been anemic most of my adult life. And the doctor has told me one doctor was halfway useful before I moved.
Scott Benner 38:16
I don't want to be married to you. I don't feel like it would be fun.
Speaker 2 38:20
My husband probably thinks the same. But we're gonna hit 10 years in the fall, so it must not be too bad.
Scott Benner 38:26
Maybe he just likes the beatings. Who knows. You're just like, how did you describe that other doctor? I had another doctor who was halfway useful. Yes. Hard as a married person. I was like, oh, that's how Kelly feels about me. I know for sure.
Speaker 2 38:44
I find my husband to be very useful. He is way more useful than doctors are.
Scott Benner 38:50
Oh my god. Hey, Ida, iron deficiency anemia increases autoimmune disease risk, particularly in female patients and patients with certain comorbidities, clinicians should conduct further clinical evaluations and laboratory tests of autoimmune diseases and patients with IDA great oh, here's a little like, like view into that. I when I wrote everything down to go to the doctor. I told her that about four weeks ago on a comfortable but chilly day. I found myself outside not expecting to stay outside. So I was in a short sleeve shirt and pants of some sort. So my let I'm trying to tell you my legs were covered. My arms weren't I didn't have any thickness on the top. It was the temperature was in the 50s early like low 50s. And I found myself holding a shovel. My neighbor saw me and we started chatting. So now the shovel is at my left side. I'm holding it about midway through the handle. It's kind of balancing its own weight in my hand and we talk for, I don't know 15 or 20 minutes and I go back inside and jump in the shower. And when I get in the shower, I realized my fingers on my left hand or blue, but not where the shovel was. And I'm like, What the hell? So oh, now it's all making sense. I called Kelly, who probably thought I was trying to trick her into getting in the shower with you. But I was like, Look at my hand. And I was like, Is this right? nods? And she's like, No. And I'm like, what? And then I believed her. Meanwhile, she has no background, you know, it was like, All right, yeah. And it warmed up and it went away. And I told Dr. BENITO that story and she goes, maybe Raynaud's, and I said, I don't. That's exactly what I thought. Right? And I said, Well, I don't know when she goes, okay. Okay. And then just she kind of filed it away in her head while she's going. But I have trouble holding on to iron. My kid has type one diabetes, my fingers get over the it's only been like the last 10 years. If I have, I have a lawn mower, I just made that noise. Because I don't know how to explain this. I have a lawn mower where I operate it with my hands up in the air above my heart, and out in front of me. And if I do that, on cold days, my fingers get very cold. And there's some and if I lay on my back and hold my phone up in front of me, my fingers get like weird. Interesting. Yes. So instead of just like hoping I'm not going to die, I'm going to actively try not to. Like that's, that's my new plan. Now that I don't have everyone's everything to worry about all the time. Like, yeah, I've got a few years left for that one. Yeah, I'm doing this. Okay, so let's try to pivot to why you came on the podcast. Why did I come on the podcast? I know. I know. I hold on a second. But but it's by like, 40 minutes in. So it's been a lively conversation. And I forgot to bring up can you say at all for me? At all? Use it in the sense. I didn't like that at all. I didn't like that at all. Earlier in the podcast, everybody has to go back and like the first five or six minutes. You said to tall? You said you were saying at all but it like got caught in your mouth. And you were you were like, I didn't like that. That's all too tall. And I was like, too tall to tall, like, and then I thought is she doing an impression of Schmidt from New Girl? And I say probably not.
Unknown Speaker 42:16
Probably not. You're right.
Scott Benner 42:19
You should watch new girl. But nevertheless, that was interesting. And you kept saying vehicle instead of car truck. Is that colloquial to you're like where you're at? To use the word vehicle?
Speaker 2 42:29
I don't know I we have a truck. But
Scott Benner 42:35
you don't have to go to this other. Nevermind.
Speaker 2 42:37
Yeah, I don't know. I've never I didn't know that. I actually said it that
Scott Benner 42:41
often. You use the word vehicle. So many times. I thought I was in a commercial for the word vehicle.
Unknown Speaker 42:46
Oh, gosh, did I really get on my nerves? She's selling
Scott Benner 42:49
me on this word. I was like, I believe I get the vehicle. I got it. Anyway, you came on the show because you experienced a diabetes fast forward from the podcast. I did. Well, at least I felt that I did. Okay, so tell me if you did, or you didn't know what happened.
Speaker 2 43:06
We were doing really well with the dash. But then school was about to start and they were actually going back to school. And I was like, I want to get him on the five and let it automate and do what it's supposed to do. And I feel like I've had some good success with the five and then at the same time, I want to throw it out the window.
Scott Benner 43:33
Okay. Tomar it, it also
Speaker 2 43:36
doesn't help that he's still honeymooning. And his body decides to work sometimes and decides not to work sometimes like his pancreas. And that's quite annoying, because as you know that there's no like rhyme or reason to when that happens. And when it doesn't. So his pump will finally figure out that it needs to increase how much it's giving in the background. And then his needs will draw and then it'll give too much in the background. And then I'm just like feeding loads all day. Or then it realizes that he doesn't need as much insulin and then by that time, his insulin needs have gone back up again. And it there's just no consistency. I'm frustrated.
Scott Benner 44:17
Are you sure that's a honeymoon is that this is activities like wax the wax and wane or does it stay pretty consistent?
Speaker 2 44:25
It stays very consistent, but I'm fairly certain that it's a honeymoon, because he's 11 and the doctor at our last appointment said that he should generally be using between 30 and 35 units a day. Until the last two or three days he's been using under 25 Okay, between 15 and 25 units a day and most of it is in mealtime and he does not usually need a lot of basil. Okay, well that's like it's percentages are like 20 to 30 percent Basal,
Scott Benner 45:00
right? And because you're saying because the algorithm is trying to figure out needs, and then the needs keep changing that you see highs and lows, because the needs change, and then it goes, Okay, hold on, I'll change back again. And then before you know it, it changes again. Right? Yeah. So you think
Speaker 2 45:21
when I'm in manual mode, I can keep it stable? Because why would you do? I don't do anything. He has a consistent amount of basil every hour, like literally, his needs are the same. Well, I have the pump set where it's the same number for 24 hours, but it is always getting that amount of Basal every hour, like there's no pausing insulin because it thinks that he's not going to go high or low. It's just consistent all day long.
Scott Benner 45:51
What's that Basal rate that you use during manual? Well,
Speaker 2 45:55
a few weeks ago, we went into all mode, and he was using between point three and point four. And then last week, it went back down to point one, five,
Scott Benner 46:05
how much is the why, like,
Unknown Speaker 46:06
85? Maybe?
Scott Benner 46:10
Well, I think you're right, I think there's still a honeymoon happening. That seems like the most reasonable answer to me. But the algorithm is working off of what when you set up the algorithm, what did you tell his basil was? Point 3.4?
Speaker 2 46:25
Yeah, I wanted it to be a little bit higher, because that's what it is. Generally, I guess.
Scott Benner 46:31
Okay, so it's so it's interesting. So are you upset with the algorithm? Are you upset with the honeymoon?
Speaker 2 46:37
I'm definitely not upset with the honeymoon, like, I am annoyed, and would rather it be consistent, but at the same time, like if his body's gonna work, I want it to work as long as it wants to work, or as long as it's going to work. And I can't say that I'm mad at the system, because that's not fair. just frustrating. It is extremely frustrating. Yeah,
Scott Benner 46:58
no, I hear you. I mean, I think that I think this is the time that I would tell you that it sucks. But the variability is not going to stop. diabetes just sort of is this game? You know, right? Yeah. Right. Now it's a honeymoon, in two years, it'll be hormones, right, and it'll be activity. And then it'll be, you know, going to college and sitting up all night and, and eating a meal at two o'clock in the morning. And then, and then it'll be the next thing it's going to be in the next thing, it's going to be like variables are always going to impact insulin and the variables of your life, unless you're going to do you know, unless you're gonna make sure you do exactly the same freakin thing over and over and over again, then this is going to happen. So as soon as the honeymoons over, you should find more stability, I would think, yeah. When you were in manual, and you noticed a decrease in need, did you decrease the Basal than 2.15?
Speaker 2 48:00
Yeah, well, I would decrease it by point 05. Until you and it would work back. And I would figure out that it would need a decrease overnight when I was speeding was
Scott Benner 48:11
would activity mode on the on the pod five? How helped with this when his needs go down? Or setting the target higher? Have you tried either of those?
Speaker 2 48:20
I have set the target higher, and maybe it helps. But I don't want to target higher, like I want him to sit between 90 and 110.
Scott Benner 48:29
So when his needs go down, you set the target higher, he actually is higher than Yeah, gotcha. And you would prefer? Yeah, is that I mean, that's a limitation of it right there. Right. You know, I don't know that that would happen any differently. I was trying to think of other systems. But I don't see that that would happen any differently with other systems, either. Yeah, you know, because no matter what settings or settings, and goals or goals, so if your needs drastically decrease, and I mean, going from point four 2.15 is a drastic decrease in Basal. And so if that happens, like even if this was if this was Arden you were talking about and she was looping, the loop would still think this is her Basal. This is her insulin sensitivity. That's our goal. And as soon as it saw a number, it would correct it. And it would be too much if her needs suddenly dropped down. Like imagine if you're listening like the easiest way to think about it is just imagine that you're, you know, your Basal is one per hour, that's your need. And then suddenly, your Basal need goes to point to an hour, but we don't make any changes. We just keep pushing one one whole unit like you're gonna get crazy low. So that's what's happening to you. Yeah, that sucks.
Speaker 2 49:45
And sometimes we have some pretty number wise they're, they're pretty low, but he's never had a scary low while he did have one before he was on the decks calm. And that was when we were still pretty new. He was wrestling was my husband and, like, tested him. And I think he was in the 20s or 30s. And he was like, I don't feel good. And I was like, I bet you don't.
Scott Benner 50:07
Yeah. Wow. That's crazy. But you know, though, see, here's the interesting thing. It's happening to you, and you're aware of all of it. So while it's not what you want, you're not overwhelmed or confused by it. Is that right?
Speaker 2 50:19
Oh, crap. Yeah, not at all. Okay. I'm frustrated by it. But I'm not confused by it. I am not. Oh, my gosh, why is that happening? Like, it makes sense. I get it. Yeah.
Scott Benner 50:30
So what when you first wrote to me, you were like, you were saying like, I think the podcast is really like, brought my understanding of diabetes, like quickly, like up is that do you still feel that way?
Speaker 2 50:44
Oh, yeah. I mean, honestly, like, so my husband's cousins, whatever family member told us about the podcast, because they had a friend that recommended that. And so I started listening to it like a week after diagnosis. And I don't know where I would be today, if I haven't listened to almost every single one of your podcast, because the amount of value that is provided between the protests and just hearing the stories, and just hearing everyone else's experience, I wouldn't know the different thing that would be so much more fearful of each fall, or each double arrow down or, like, I wouldn't know what to do. And I would freak out. And now I'm like, Well, we're definitely not going to over treat that low. We're going to give you what you need. And then we're going to see what happens. And we're going to wait, and we're going to be patient. Like I know, you might feel a little low right now. But give it some time, and it will turn around.
Scott Benner 51:50
I imagine it helped to when the needs went down, it probably stopped you from just looking at the pump and being like, the thing doesn't work. Because that's, I think that's what happens to people. They just they're like, the thing stopped working. But like, you know, like, no, no thinking past it like that. Just I was using a pump and it worked fine. And suddenly it wasn't working anymore. And by working I mean, my blood sugar's weren't doing what I expected. It must be this thing. Instead of like, I wonder why? Because the because the thing is just doing what you tell it. Whether Yeah, think of it that way or not, is only it's a lot like, like, it's like, you know, people get scared about like autonomy. They're like, I don't want a robot, it's gonna take over the world, and the robots gonna do what the what you tell it to do. It's not going to start having feelings on its own. And when you go home at night, it's not going to reprogram itself. There. It does what you tell it to these pumps do what you tell it to do through settings. And that's it. But it's just the it's a delivery system for settings. And people are like, Oh, well, the algorithms are smart. Okay, yeah. But they're not really smart. They're just using your settings to deliver insulin based on your blood sugar. There's the the next write a manual pump is delivering insulin based on your settings. And your input of how many carbs you ate. That's what it's doing. And an automated system is doing that plus, making adjustments when it sees your blood sugar going up or down. And it doesn't make it smarter just makes it smarter. Yeah. It's not free thinking. We're pretty far from that. But I can't even figure out how to release three goats so that your neighbors say and I don't know how we're supposed to figure it out.
Unknown Speaker 53:42
Neither and I'm not the technology guru.
Scott Benner 53:45
Heather. I'm just so at night you just you just come in at night and then you put a couple of goats on the hill and nobody sees you're done.
Unknown Speaker 53:53
Right and then the neighborhoods to benefit to Yeah, they
Scott Benner 53:55
make baby goats and everything's fine. No, no, no, no,
Unknown Speaker 53:58
we don't we don't need baby goats. Well, how
Scott Benner 54:00
you're gonna need more goats.
Speaker 2 54:03
Yeah, I don't want baby goats. When you don't want more babies of any kind.
Scott Benner 54:08
Other. You don't. You don't like other people's children or baby goats. What happened to you?
Speaker 2 54:15
I think I missed the parental like desire that a lot of women get. Okay. I love my children and I'm so glad that I have them. I cannot have more.
Scott Benner 54:30
Because of your disdain for children.
Speaker 2 54:33
No. Like, my my, my second son did some damage. Oh, he
Scott Benner 54:38
grabbed all the horrible things on the way out. Yeah, he grabbed a hold of
Speaker 2 54:41
several things on the way out. And I had to have my tubes. I had to have a first permanent form of birth control. And I was too young for a hysterectomy. Oh, I'm
Scott Benner 54:52
sorry. So I thought you were saying intellectually you weren't going to have any more children? No.
Speaker 2 54:58
Okay, I don't have my tubes. So I don't have the connector point to be able to have more kids.
Scott Benner 55:04
Wow. They didn't just tie them they removed them. Correct. Was there a some sort of an obstruction or a tear or break?
Speaker 2 55:11
I had a fourth degree tear and ended up basically having a vaginal C section delivery with my son.
Scott Benner 55:19
Okay, that just gave me the shivers down my spine and I don't have an I don't have a vagina. So what is vaginal resection? Did they didn't cut your thing, did they? Well,
Speaker 2 55:28
they didn't. Well, they did try to cut it. And then he was like, Nope, I'm just going to rip it the rest of the way. So I was ripped. I think the word that you'd like to use is taint.
Scott Benner 55:40
I've also heard goop on recently, which I've enjoyed.
Speaker 2 55:42
Yes. So literally, from the back of my vagina all the way down to my rectum and ended up having to have a reconstructive surgery.
Scott Benner 55:54
I'm so sorry. Advice. By sorry. I mean, for me for hearing that, because it was very upsetting. It was very, very upsetting when you said that. I'm getting I'm sweating. My butthole syntax. Oh my god. What's the recovery from that? Like?
Unknown Speaker 56:15
It was not pleasant.
Scott Benner 56:21
So yeah, I mean, even if you hadn't, even if they hadn't taken the tubes, I assume you you're not up for one way or the other after that, right? Oh, yeah, I wouldn't do. Oh my god. Oh, yeah, I'd get my husband and girlfriend. If I was you. I'd be like, listen completely leave me alone. Stay away. Actually, we'll build an extra bedroom where I was gonna put the goats can live there with your Paramore and come in here when you want to talk about family stuff. Oh my god. I'm so sorry. Yeah. Oh, yeah. Have you told your son that or do you keep that from him?
Speaker 2 56:59
Oh, no, he 100% knows that he damaged me on his way out. How did you not? I can't have kids because of a big head.
Scott Benner 57:08
Or how did you not say he totally knows that he ripped me a new asshole. How did you not say that I was counting on you right there? Who's counting on you to cover for me? So I wouldn't have to say that. Well, that's insane. Oh my god, I have questions about how you poop after that. I'm sorry. I'm gonna ask them. I thought I wasn't going to but I am. So after the tear happens and they repair everything. How long does it take you to be able to do your business again?
Speaker 2 57:34
Well after so the reconstructive surgery didn't happen for six months.
Scott Benner 57:39
Wait, what? Why? You're making it hard again. How did that happen? Wait, why? Wait, stop, stop, stop. I'm not okay. Hold on. It took them six months to do the reconstruction.
Speaker 2 57:53
They didn't believe me that anything was wrong. Scott, what do you mean, they're doctors?
Scott Benner 57:57
This was not obvious when we examined your undercarriage that there was a problem?
Speaker 2 58:02
No, they sewed me back up just like they would everyone else. But my I'm gonna make you hot, some more. My
Scott Benner 58:11
not in the way I was hoping. But go ahead.
Speaker 2 58:15
My sphincter muscles. Were only at like 50% capacity. So they had to tear them or cut them again and then tried to connect them at a closer point. So that it could have like 75 to add percent working muscles in my anal sphincter.
Scott Benner 58:41
But you said you're good at telling a story that just oh my god, they're just paint a picture in my mind. I know that I don't know anything about anal reconstruction. And I understood what you were talking about. They had to kind of change the grab point for the muscle to make the sphincter close and open properly. Yeah. Yo,
Speaker 2 58:59
incontinent of urine and bowel for about six months before they realized that I was telling truth.
Scott Benner 59:06
Like I don't know how this took a turn out there. But are we talking like shards or like full things just falling out?
Speaker 2 59:14
I would say sharp. Okay. You would say I wasn't showing my pants.
Scott Benner 59:20
Anything that we could name the podcast? Yeah. Wow. So that's all okay, now everything's staying where it's supposed to?
Speaker 2 59:30
Yeah. Um, for now, they told me when I had the surgery, seven years ago now, that five to 10 years post surgery there may have to be an injection of or another surgery to put some sort of a port that sends signals to my sphincter muscles to make it continue working. Because it may just stop working at some point. I don't know. We're just waiting to see what happens. Wow.
Scott Benner 1:00:00
Oh, boy, that kid ever forgets your birthday or Mother's Day? Even one time, I'd be right on the phone. And I would, I would tell him that exact story you just told me, I'd be like, I would be like I was my birthday today and I didn't get a card. And I know you're 43. But I just wanted to tell you the story about when they had to restore the muscles in my sphincter. Get a drink, because it's gonna take me a while because you were really good at describing that other like, Really? Really? I think, I think on a desert island, I could take a shot at that surgery based on what you just said. So. Holy crap, that was terrible. Again, for me, I'm not even thinking about you. Just thinking about myself right now. Oh, my gosh. Oh, yeah. Okay, okay. Okay. All right. Hold on. I was gonna you know what I was gonna ask you before we got to this, I was gonna ask you what you were in the military for? That. I was like, I'll just ask this real quick first. I didn't know what was gonna happen. Oh, my God. What were you in the military for?
Speaker 2 1:01:02
No, that was fun. I was. I was an electrician. By trade that never worked an electrician and did paperwork as a human.
Scott Benner 1:01:17
You were in the Navy. I was in the Navy. Okay. And you were you came in as an electrician. And they did not give you that kind of work?
Speaker 2 1:01:26
No. Okay. But that probably is because of I don't know, my reconstructive surgery and all the issues that came with that. Seriously. Yeah, I was medically discharged
Scott Benner 1:01:39
you weight from your but
Speaker 2 1:01:42
kind of that was part of it. I have depression and anxiety. The delivery caused lots of issues in my hips, which caused weakness in my knees, and I fell down the stairs carrying my youngest. Oh my god. So they were like your flight risk? Sounds like
Scott Benner 1:02:02
you're a flight risk, like a flight of stairs risk. Sorry.
Speaker 2 1:02:06
Yes. Yes. And they didn't want me on the waterwell or on a ship falling down the stairs or anything.
Scott Benner 1:02:14
Wow. You know, you mentioned stairs twice earlier in the show. When you were talking about your son's diagnosis, it was apropos of nothing at the moment like it didn't belong in the story. And you made sure to give me the detail that your husband carried your son down the stairs because they were slippery. You know you did that? I did? Yeah. And it's not if you think about that story from like, a third party perspective. Telling this who carried the kid down the stairs is meaningless to the story. Like it was important to you like you inserted it in the story on purpose. That at the time, I actually, I there's a note here in front of me about it, because it struck me is like out of place in the sentence. I was like, I wonder what that's about, but we got to it eventually. Okay. So your tech, by the way, flight risk is now the name of your episode. Finally, we found it. Beautifully found. Okay, so you're discharged honorably? I imagine after how long their medical discharge is?
Unknown Speaker 1:03:14
Just under three years. Okay.
Scott Benner 1:03:17
And, wow. And how's the anxiety been since then?
Speaker 2 1:03:21
Well, I see a therapist every three weeks. That's fine. It's okay. We manage. I intentionally do things that make me anxious to force me to work on my coping skills.
Scott Benner 1:03:36
I just thought of I just thought of a question. So inappropriate, that I'm not gonna ask.
Unknown Speaker 1:03:45
But you asked how I pooped afterwards.
Scott Benner 1:03:47
I know. But this is I found a different level. You just said something. And I thought, so. No doggy style, right. I mean, why not? I don't know. I didn't know if it made you nervous. For the exposure, you know what I mean?
Unknown Speaker 1:04:02
I mean, it's definitely not my ideal.
Scott Benner 1:04:06
Go to my ideal setup. I love how you word things. That's not my ideal set.
I'm so sorry. This got really away from us really quickly. Oh, my God, that's terrific. Okay. All right. So I'll leave you comfortable with me leaving that question in a lot. Okay. All right. I wonder if I
Speaker 2 1:04:34
mean, I literally told you about a reconstructive surgery and being incontinent.
Scott Benner 1:04:40
Yeah. So but that's medical. People don't. People don't like to talk about fun. They just want to talk about medical stuff. It's okay. If we talk about buttholes medically, if I if I made a joke about you know, any number of pie there's like six of them in my head right now that I could make that I wouldn't, that I wouldn't make. But then people be like, Oh, See what happens? Everything sexual?
Unknown Speaker 1:05:05
Well just tell people to get over themselves. Yes.
Scott Benner 1:05:07
Also your butthole is the least sexual thing I've heard in a while. Talking about being in the military, it sounds like a warzone down there. So, yeah, I mean, I'm like, I mean, I obviously I'm kidding, but I'm not kidding. Also, like, I'm thinking about not recovery and healing. It's just such a delicate place, you know, just had to have been long and difficult I would imagine.
Speaker 2 1:05:34
Oh, it was and then the the hospital let me leave without using the bathroom first. tested out once. No, I didn't. They just let me leave without using the bathroom. And, like not even peeing, and they gave me a saddle block. I don't respond to anesthesia very well. Okay. I had a colonoscopy, Don, and I woke up in the middle of it and pick the doctor and told him they had to stop like I don't respond to anesthesia very well.
Scott Benner 1:06:00
You woke up in the middle of oh my god, did you really like awake fully? Like aware? There's like, hey, there's something in my button. Everybody's here. Like you had like full consciousness.
Speaker 2 1:06:11
Yes. And I kicked the doctor and told them that they had to stop. I would have done and then they gave me more anesthesia. And then I woke up later, but I still remember the incident happening.
Scott Benner 1:06:22
Wow. Why is your life full of so many horrifying things to do with your butthole? I don't know. I don't know. Purpose, right? You don't have like, a fixation or anything like that. Just bad luck. Nope. That's that kitty Scrooge. Yeah. Well, literally and figuratively. Good luck. Yeah. That's really something. Maybe don't tell your son about this. This might really scarred like, Just tell him there were complications, but you're okay now. Let him suffer from Sure.
Speaker 2 1:06:58
I'll be fine. I limped through it. And I'm fine. I'm here to tell
Scott Benner 1:07:02
the tale. Yeah, no kidding. How long ago was all this? 10 years?
Speaker 2 1:07:05
Oh, my youngest is going to be nine in July. So around that distance of time,
Scott Benner 1:07:12
eight years ago. You're in your mid 20s. When this happened? Mid to late 20s. Yeah. You know, for some reason, that makes it more disappointing to me.
Speaker 2 1:07:21
I agree. That's when my therapy sessions really kicked into gear. Did you have any hits 24 When I had him?
Scott Benner 1:07:30
Seriously, do you have any anxiety prior to all this?
Speaker 2 1:07:33
I did. But it wasn't too bad. Yeah, I had depression prior to all of this. Okay. But the anxiety has been progressively worse and worse. And my family history is all sorts of disastrous for mental health. And all of these we heard
Scott Benner 1:07:53
you moved across the country. I figured that when you said I didn't. I didn't think it was over politics when you said that. So I mean, honestly, as oddly as we're getting to this, you have real medical trauma. Oh, yeah. No kidding. I had no idea.
Unknown Speaker 1:08:10
Doctors. Well, yeah, I
Scott Benner 1:08:12
gotta trust doctor. Yeah, no, I
Unknown Speaker 1:08:14
don't trust them at all.
Scott Benner 1:08:15
Yeah, that I got. So it's a double whammy because you're, you have a medical trauma and you needed doctors, and you already weren't in a position to try to trust them. And then that got worse when they do things like let you out of the hospital first, because you didn't finish that thought. But I'm assuming your first bowel movement after the procedure at home was not a great moment.
Speaker 2 1:08:34
No, and I didn't pee for 24 hours. So then I had to go back to the hospital local to me, which by the way, the surgery hospital was an hour and a half away at that time, then I had to go to the local hospital and get a catheter put in for a week.
Scott Benner 1:08:47
Wow. Geez, a bad day. You had some bad luck there for a while, huh? Yeah. Do you think you would have been? I don't want to say it like this, but I'm going to do you think you would have been better off if you lived in a more metropolitan area? No, no, you'll have lived
Unknown Speaker 1:09:00
in more metropolitan areas and they still
Scott Benner 1:09:05
have their eight star
Unknown Speaker 1:09:06
doctors.
Scott Benner 1:09:10
At the very least the ones you've met so far. Well,
Speaker 2 1:09:13
like as a teenager I got asked was I putting the blood and pus in my urine from having kidney stones? Because I thought that I just wanted pills. Oh,
Scott Benner 1:09:23
they thought you were what pills. Would you get from that though?
Speaker 2 1:09:27
painkillers? Yeah, that's what they thought that I want to.
Scott Benner 1:09:31
That's brilliant. Do people do that?
Unknown Speaker 1:09:34
Oh, where I'm from 100%.
Scott Benner 1:09:37
So I go into the doctor's office. Hey, everyone, here's a how to for how to skin pain pills. I don't mean it this way. But the people would go into the doctor's office, say hey, I have like give them certain symptoms that would make the doctor asked for urine and then you'd put like, blood into it to fake the things so that you would get the pain medication?
Speaker 2 1:09:56
I guess. I don't. It never made sense to me because I had blood The End person by urine and they were like, are you putting that in there? And I was like, Yeah, I'm squeezing, is it in the bathroom to make sure that there's a little bit of pus in here somehow, like, No, I would have brought it down, I would
Scott Benner 1:10:12
have brought in a baggie if I was gonna do it. But I hear what you're saying. Like, you can't count on this, that being there on the day, we got to pre plan for that. But you know what that is teaching me. Addiction is a real motivator. Like, seriously, because that's, I know that sounds silly, because it's such a weird and odd thing. But really, if you step back, you know how brilliant that is. Like, like, really like, like, that's a problem solving person right there. I need pain medication. I'm going to go to the doctor say these things, put blood and pus in my urine to mimic this issue that would end up with me getting paid. I mean, honestly, I wouldn't have thought about it would you know, just saying,
Speaker 2 1:10:56
I was like, 16? I mean, that's not gonna stop anyone from doing drugs. But like you I don't drink. I don't smoke. I don't. I'm good. Something I didn't even consider that at the time. Yeah. And which is funny, because my brother was a drug addict. And my mom was an alcoholic or was an alcoholic. She's no longer with us. But like, I don't even consider that. Like, I don't even know that was a thing.
Scott Benner 1:11:20
Yeah, that's really I mean, it's just oddly interesting to me that that would be a way somebody would come up with drugs like to drug seat because what you're doing is drug seeking. But, but the way you the way you handle it, I mean, that's like, second, let's not just go in there and going, Oh, I hurt you like, let me let me show you. Let me show you testing that will show you I'm in pain. I don't know, it's pretty damn impressive. I'd be seriously. Especially because you got to think that the first guy that came up with it, and it was obviously a guy. The first time somebody came up with it, like it was probably during withdrawals. And they're like, You know what I could do here? That's gotta be Yeah, it's just fascinating to me. Wow. Okay, Heather, what have we not talked about that we should have? Oh, diabetes? No, no, in the middle, you said the podcast was really valuable and helped you. I heard you say that.
Speaker 2 1:12:10
It did it. I mean, truthfully, all the things that you say on the podcast, are so true. And my distrust for doctors was, I know that I'm supposed to consult my doctor before I do anything, because you're not a medical doctor. And this isn't medical advice, but they don't know what they're doing. None of them know what they're doing. And an endocrinologist that doesn't have diabetes definitely doesn't know what they're doing. And they're just guessing just as much as I am. But I'm seeing it every single day. And they're just seeing numbers on a piece of paper. So I have been making changes since three weeks post diagnosis on my end, because the doctors wouldn't respond to our messages, they wouldn't help us. They were neglectful. Just say the least,
Scott Benner 1:13:02
you know, it's funny, there's two things happening that you can't see right now, I'm gonna tell you about the first one and the second one. The first one is I have another monitor off to my other side where I was Googling things and stuff like that, like anemia and stuff like that. And my Facebook page is open for the private group. And it just populated in front of me because somebody tagged me. I had been waiting to be able to share this, but I didn't think it would be so soon today, my son's endo appointment is a once he was 5.2. His last one was 6.3. And though I had been casually listening to the podcast for a while, I had only recently, I had only recently started making changes to the settings on my own. We don't refer we don't restrict food activity, blah, blah, blah. But what that person just said is the same thing. It's fascinating. They just said the same thing you said, like I made changes to my settings. That's yeah, and we said earlier, diabetes is just settings. It's it's you get the right amount of insulin at the right time. And if you're on a pump, that happened through your settings, if your settings are wrong, you're not getting the right amount of insulin. If your settings are wrong on your insulin to carb ratio, for example, then you're Miss timing your meals. It's all just timing and amount. So yep. And for a little boy here, who by the way is adorable whoever's kid this is well done. And, and for you, a lady in her 30s Whose butthole one time exploit it doesn't matter if you're a little boy or a lady with an exploded butthole. It's timing and amount. And that's that. Yeah. Yeah. Wow. Good. I appreciate you saying that. I mean, so the reason it was exciting to me when you reached out at first and you were like, Hey, I think I fast forwarded like with the podcast. I was excited to have you on because sort of behind the scenes. I get pressure from people and mostly happens. I don't want to say where mostly happens, but because it'll out somebody and it's unfair to put pressure on them. But there are people who We'll tell you, basically, when somebody is diagnosed with diabetes, don't tell them everything. It's too much. Yeah, like you don't, don't give them all the information, let them figure it out slowly. And I'm like, I don't understand that idea. Like, tell people everything. And then they can apply it as it makes sense to them. It just because this x person is easily confused by something, doesn't mean that everybody would be. And I think it's wrong to withhold things, protecting the one person who attend who would be confused by it. Because overwhelmingly, I mean, if you saw the numbers for the downloads of the podcast, and how many people are in the Facebook group and everything, you would see that overwhelmingly people can handle being told the truth. Yeah. So I like that idea. Because it is my, it is my feeling that if I knew when my daughter was diagnosed, what I know now that the first number of years of her life with diabetes would have been much better.
Speaker 2 1:15:58
So exactly, I feel very fortunate that I did have the background that I did with his diagnosis, like I already knew how to count carbs. So I don't have any issues with putting things on a scale. Like I've taught several clients how to do that, like it. That was a no brainer to me, having to figure out the insulin to carb ratio, like it's, it's a playing game, like you have to figure out what works and not all carbs are created equal. So you have to figure out what works for this living and what doesn't work for that food. And you just kind of have to learn and go with it. And like you say, be flexible. And take a chance and be bold. And if you have to catch a low later then catch a low. But I'd much rather fight. Well catch a low than fight a high all day. Yeah.
Scott Benner 1:16:45
And you got that I'm not. I'm not speaking for you. But you got a lot of that for the podcast, right? All of that from the podcast. Alright, so Well, I'm glad. Remember I said I was doing two things that you couldn't see. You want to know what the second one is? Yes. Okay. This is so weird. I'm not wearing shoes or socks right now. If I cry, if I cross my left foot over my right foot, I can use my big toe on my right foot and the toe next to it to pull all of the toes on my left foot. Like I can crack the toes on my left foot by putting them in between my big toe on my, the second toe, on my right foot and pulling. I cannot cross my right foot over my left foot and accomplish the same thing. I can't pull the toes on my right foot with my left foot only my left foot with my right foot. I know it's not a big deal, Heather, but I work on it constantly and I can't figure it out.
Speaker 2 1:17:38
Well, I'm gonna make a suggestion for you. Go ahead wear shoes that you're gonna. No absolutely not. No, don't wear shoes. Wear them as least often as possible. Your feet need to connect with the ground. Do what is called cars. C A R S with
Scott Benner 1:17:58
Did you mean? Did you meet vehicles? Nope. I did it. And do it with your toes? Controlled articular rotation? Foot car, huh? Okay.
Speaker 2 1:18:12
Yeah. And it'll teach you different you'll I mean, it's gonna take a lot of effort because I can't do it still either. But lifting gesture big toe up, or lifting all of your other toes, but your big toe with your big toe being sitting on the floor. Just get some more motion and mobility. Really in your toes? Well, I'm
Scott Benner 1:18:32
gonna do that while I'm sitting here instead of the other thing. Yeah. What's my end goal with this just more control over my feet? You have more control over your toes. Maybe one day I'd be able to eat with them. I mean, sure. If you want it, there's no way you thought you thought your hips were bad. There's no way my foots get into my mouth.
Speaker 2 1:18:54
I don't think your your feet are the foundation of your whole body.
Scott Benner 1:18:59
Okay, so you said some are going to be that we're basically if you're bored, it's over now, but I have one more question for Heather. Okay, so I gotta find my phone. I found it. It's about electrical impulses.
Unknown Speaker 1:19:17
From the CANS unit.
Scott Benner 1:19:18
No, from the ground. Oh, second. I didn't know like we if you were getting into some hippie stuff when you said like your feet have to be on the ground like connected with the ground. Were you saying that? I mean, if you want
Speaker 2 1:19:31
to call it hippie stuff, but it's just the foundation of your body and many people don't have good the ability for their feet. They don't have a lot of people just don't use their feet. They use shoes and your shoes, take away the sensations that you would have if you walked on the floor.
Scott Benner 1:19:57
Okay, so It's like something about grounding. Yeah. Genuine Earth. There's like sleep systems beds that they say grounds you to the, to the earth. And I don't know why for. Why do I know about this? I don't know. Like, I mean, I don't know how true or false it is, but they literally want you to run a wire from like your bed to the ground outside to Oh, I'm not doing it to connect you to the grounds like, I don't know. Anyway, it sounded kind of hippy to me. But that sounds happy. Yeah. I kind of have thought you were heading there?
Speaker 2 1:20:36
No, I don't think you should connect yourself to the ground outside. Okay, I think when you stand up and walk you do that enough.
Scott Benner 1:20:43
Gotcha. How to connect the ground of your bed with an earth grounding Earth. It's called earthing, earthing or grounding. I don't know if anybody knows about that. I'm interested.
Unknown Speaker 1:20:53
I'm not. Yeah. Well,
Scott Benner 1:20:55
I'm interested because I think it might people. By might be by might be up saying them. 100% Sure it is. But somebody has a different experience with it. I would like to hear about it.
Speaker 2 1:21:09
Well, if it's a doctor, no offense, it's probably not going to be factual.
Scott Benner 1:21:14
Heather, are there people in other professions that you don't trust? Oh, almost all of them. Okay. Would it be easier to make a list of people you do trust? Yes, go ahead.
Speaker 2 1:21:25
Well, you You're not a doctor. And you just base yourself off of your experience and what you've learned. I trust my husband, not the youngest kid, maybe the older one. Yeah, I do. Trust him. He's really good. He's really mature. Even before diabetes. This one's had. Literally, um,
Scott Benner 1:21:50
oh my god. You never had that feeling like that. Like, oh, I really want to have a baby feeling. No. How did you end up having a baby? drunk at a wedding? No. Okay. It's usually you don't even drink it away. Does that did your husband like seriously? Does your husband want kids? And you were like, Alright, I guess so.
Speaker 2 1:22:12
No. Neither one of us had like the parental instinct. It just kind of happened. And we just.
Scott Benner 1:22:24
That's right. We're gonna do this. I really don't think you should let your children hear this.
Unknown Speaker 1:22:31
Okay, that part on mine?
Scott Benner 1:22:33
Yeah. leave that part out. Yeah. Mommy and Daddy are here. Yeah. Well, isn't it interesting how that even for a person who explains things the way you do? Now they're here? And would Can you imagine them not being here? No, not at all. Something, isn't it? Yeah. Yeah. Did your husband imagine it? Can I ask? Did your husband have a similar like family history? Growing up? US
Unknown Speaker 1:23:00
similar? Yeah.
Scott Benner 1:23:03
So you think is it fair to say that you are trying to protect other people from being treated the way you were treated?
Unknown Speaker 1:23:10
Oh, that's 100%.
Scott Benner 1:23:13
Okay, fair. So maybe back when you were younger? You couldn't imagine how to do that consciously. So you thought just by not making babies? It would stop you from being your mom or something like that?
Speaker 2 1:23:24
Yes. Yeah. Yeah. Because being her was, and still is one of my biggest fears. Wow. Okay. It's interesting, even though she has since passed, but yeah, it's one of my biggest fears.
Scott Benner 1:23:38
I understand. Alright, I think we've done a lot here today, Heather. Good. I think we're done. What's the rest of your day looking like? schoolwork? Oh, god, that's horrible. I'm gonna edit this podcast on my face falls off. I'll probably edit for the next. I don't want to say this. But I'm trying to go I'm going away next week. So you guys can't know that I'm gone. So I have to. I have to basically button up everything that I want to put out for like the next 12 days. So I think it's crazy. I think I'm gonna edit. It's two o'clock now. I'm gonna get something to eat. And then I'm going to edit probably until like 10 o'clock tonight.
Speaker 2 1:24:19
That's a that's a long day. Yeah. I mean, it's what two o'clock where you are?
Scott Benner 1:24:22
Yeah, it's gonna take about eight hours of editing. And then I'm going to then I'll pop up tomorrow Fresh as a daisy and I will record at 9am 9am Who put that on my schedule nine and whatnot. How? But This better be good. This better be a hell of a conversation for me to be up that early. I'm not. I'm just not even joking at all. And then I have a meeting at 5pm tomorrow for a new advertiser. speculations. Oh, we'll see. Hopefully they're in we'll find out And then I'll spend the rest of tomorrow and the next day making the content ready and scheduling it. And that's, I
Unknown Speaker 1:25:09
appreciate it what
Scott Benner 1:25:10
I'm gonna do. So it's my pleasure, as they say, yeah, yeah, that's what you're supposed to say bye. I'm supposed to say that. And that's what it actually is my pleasure. So, like joking aside, like, I don't know what this says about me. Or maybe we could figure it out if we had more time. But that your son is healthy, and that this like little boy got a five to and that all the people in the group are doing well, or on their way to doing well, or doing poorly and don't realize that they stay with the podcast long enough that they'll be doing well. Like all of their success makes me if you ever had a job that at the end of the day you were like satisfied with and you felt good about? Yes, yeah. That's how I feel. Like, it's just yeah, it's like, Oh, I did a good, I did a good job. And I did my job well, and people are going to do better because of that, like, I try not to get too. I try not to get too existential and think about it too far. Because I don't want to give myself I just don't think I deserve all this credit, because people do a lot of hard work, obviously. But there's no doubt in my mind that you meet a nine year old boy with diabetes, and he doesn't find the podcast, and you find one that does. And the one who does has a better chance of like, 30 years from now still being healthy. Yes. And, and like I tried to think about that I try to think about like, I'm going to get up today and do a thing that is going to save a person from something. years from now when I'm dead. And, and they'll never even know they were saved from it. So there'll be saved the physical impact and the psychological trauma of it. Right, and that'll be
Speaker 2 1:26:50
fine. We'll probably never know. I'm hoping that one day he'll listen to the podcast. But
Scott Benner 1:26:56
yeah, I just think I just think like, wow, like, that's something like I think because like, if you're talking about it, like in a business sense. I hope that we're creating doctors and CDs and people who stick up for themselves in doctors offices, and people who take the time to talk to their doctors about it, which people do people from the podcast all the time, they'll get into, you know, a setting with a doctor, the doctor will be like, I don't know how to you know how to do all this. And they'll literally pull out their phone and be like, I listened to this episode, and then this one and this one. And and that is great. You know, like, because it'll help people. But like, Are you the way I used to say it? Because people find it morbid, but like, I kind of hope that like, I kind of hope 1000s of people show up at my funeral. And they're all They're going like, Hey, that guy like he did a thing a long time ago when I'm healthy because of it. That's really like I don't and that's a again, a it's a bit of a euphemism. I don't actually want you all to show up at my funeral. To be perfectly honest, please leave me alone. But But, but I want that idea. Like I want that when my I want that one day when someone hears that I passed. There's five seconds where they think I think I'm healthy because of that guy. And oh, yeah, and not for me. I don't want it for me. I want it for what it means to them. That's just the way I'm explaining it. And if that makes sense. Yeah, yeah.
Speaker 2 1:28:20
Yeah, I understand. Good. I'm gonna I'm gonna promote you for a second on your own podcast. So like whatever. juicebox Doc's dot com I think that's the website. Go to it. That's how I have my current doctor that knows about the Juicebox Podcast and supports the methods again juicebox Doc's dot com Yeah, go to the website and find a doctor local to
Scott Benner 1:28:47
you it's it's a list of doctors that people from the podcast suggested may go Yeah, I don't do a good enough job I have a lot of stuff sometimes I don't do a good enough job promoting all of it but that I actually thought that today when there's a person that Facebook group put up this it's a graph like a real up and down graph. And I popped in my said, like you're chasing the blood sugars. I forget what else I said I said like three other things is like in the person's like, we have to explain to me what this means. Like it would be nice if there was an episode about it. I thought you mother
Unknown Speaker 1:29:20
there's a whole podcast
Scott Benner 1:29:23
podcast about it. It's all been written down already for you. But no, I didn't really think that I just what I really thought was like, oh my god, I'm not doing a good enough job. reaching people. Has that information for him exists already. And so we just made sure you send a link like check this out. And you hope they make it to that because the answer to that problem is there. I mean, you
Speaker 2 1:29:43
can lead a horse to water I think that's the same you just can't make him drink. You literally have led everyone to the water. You may have the resources.
Scott Benner 1:29:53
Yeah, I mean, yes and no like it is possible. To be in is crazy. But it's possible to be in the Facebook group for the podcast and not even know about the podcast. I've actually seen it. Like I've seen.
Speaker 2 1:30:07
I've seen it too, but been in there for years. So like what podcast? Like, I mean, read the title of the page,
Scott Benner 1:30:16
give any idea how that makes me feel something like, oh my god, really? Like what am I doing? What am I not doing? Wow.
Speaker 1 1:30:26
Well, Heather, you were terrific. I don't think I can put the word butthole in the title because we already have an episode called butthole. Adjacent, which is about Jason's teen years didn't explode. Yours was decimated by childbirth. But
Scott Benner 1:30:42
wow, I bet you that takes sexy time away for like a whole year. Am I wrong? No,
Unknown Speaker 1:30:47
you're not wrong. Yeah. No,
Scott Benner 1:30:49
I'd be like, no, no, thank you. No, yeah. No, thank you. Keep your baby. Keep your baby stick over there. Thank you. Yes. Okay. I'm good. Oh, yeah, I bet. All right. Heather, thank you very much. You were terrific.
Unknown Speaker 1:31:04
Thank you.
Scott Benner 1:31:05
Hold on one second for me. Okay.
Well, I'm gonna thank Heather for coming on the show, of course, and I'm gonna thank Omni pod Omni pod.com/juice box, maybe you could get a free 30 day trial of the Omni pod dash. Or maybe you'll just jump right into the Omni pod five. I don't know what you're gonna do. You might not know either. Go check out the link, check out the link. I don't know. Go to the link, Omni pod.com forward slash juice box. When you support the sponsors using the links you're supporting this show. Speaking of the sponsors, touched by type one touched by type one.org. head there now follow them on Facebook. Follow them on the grammar that kids don't have on Instagram the grammar anymore, do they? It doesn't matter to me. Go do that stuff. Touch by type one.org Thank you so much for listening. I'll be back soon with another episode of Juicebox Podcast.
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#1047 I Love Tall Boots
Rebecca has type 1 diabetes, celiac, Hashimoto's Raynauds, Mast Cell and more.
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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 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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