Scott Benner 10/19/22 Scott Benner 10/19/22

#775 Don't Knock Knoxville

Rita got type 1 diabetes from a cancer treatment.

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Scott Benner 0:00
Hello friends, and welcome to episode 775 of the Juicebox Podcast.

On today's show we're going to be speaking with Rita, she was diagnosed with type one diabetes at age 57. She's 63 Now, and she got her type one diabetes in a rather unique way. It was brought on by a therapy she was taking for her cancer. Her story is rather unique and incredibly interesting. 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. If you're enjoying the Juicebox Podcast, please share it with someone else who you think might also enjoy it. It's the best thing you could do for the show. Share it, help people listen, help them find it in Spotify or Apple podcasts or wherever they get audio. If you're a US resident who has type one or is the caregiver of a type one, please go to T one D exchange.org. Forward slash juice box and complete the survey. When you complete the survey, you're helping yourself people living with type one diabetes and the Juicebox Podcast T one D exchange.org. Forward slash juice box

this show is sponsored today by the glucagon that my daughter carries G voc hypo pen. Find out more at G voc glucagon.com. Forward slash Juicebox. Podcast is also sponsored by the Contour Next One blood glucose meter is a great meter that is easy to carry, easy to use. And just lovely to be around. Have you ever had a device like that you just like I like holding this thing. It works. That's how I feel about the Contour. Next One blood glucose meter. It works. And I don't mind holding it. Here you go. It's high praise for a blood glucose meter. Damn things accurate and easy to use what else you want? Contour next one.com forward slash juice box. links in the show notes links at juicebox podcast.com.

Rita 2:22
An early riser. I just don't get to work

Scott Benner 2:24
early. I don't usually work that sort of like no it's not crazy. Don't get me wrong. But last night I sent Arden a text at school at like 730 And I was like hey really stay on top of your blood sugar because I want to go to bed on time. And you know like I'm worried right? working away tomorrow. Baba bomb. She's like Oh, yeah. And then. I don't know what Yeah, right? At 10 o'clock, you know, I was like, so then I'm texting. I'm like, Hey, you have to Bolus and she's just not answering. I'm like, oh, no, sorry. And I realized that I think she's asleep. And, and her blood sugar's kind of going 161 70 And I'm like, gosh, so I remotely Arden uses loop. So I'm remote. Yeah, I'm remotely like jacking up her basil and and it's setting lower targets and all the things that I can impact from from the Nightscout from afar. Yeah. And watching, I'm texting like please just wake up just I just needed a Bolus, like a half you don't like please just Bolus

Rita 3:31
so So what time does that all end?

Scott Benner 3:34
Oh, I go to bed at 230. And then, you know, so like, it's okay, I'm gonna get up at 730. I'll let the dogs out and take a shower, blah, blah, blah. And at seven, like five of seven, I get a text. And it just wakes me right up. And it's nonsensical for my mom. I'm like, Mom, what are you saying? And she goes, Oh, she goes, nevermind, this was a mistake. Go back to bed now, Mike. Yeah, you're

Rita 4:00
not gonna go back to sleep. So I slept four

Scott Benner 4:02
and a half hours. Oh, well. And then I went downstairs and I was like, Oh, the dogs look rested. That's nice. And I took them out. And you know,

Rita 4:11
yeah, you could nap after the call. Well, maybe it's

Scott Benner 4:15
possible. My son was like, I need to get tires on my car. And I'm like, Huh. I don't really know how to do that. And I was like, I just didn't do that today. And I was like, oh, yeah, sure. I'll do that today. Yeah, but yeah. Anyway, I'm sure I'll be fine. Or one day, it'll just kill me. This is the day who knows?

Rita 4:36
Yeah, yeah. A parent job never ends does it? It's like,

Scott Benner 4:40
apparently not. Parents. Apparently. It's funny. Arden's biggest problem at school, all the things that we were, I'm sorry, read a word recording just in case this ends up being okay. Yes. Of all the things that I was ready for. The one thing I didn't consider is that the quality of The food if the college would not be as maybe pure as it is, yeah, at home. Yeah, that's where we're having problems. Yeah, it's interesting of all the things.

Rita 5:11
It's like, I guess, eating out all the time, right. I mean, considered, I think she's not having a home cooked meal. And it's like, she's eating out all the time.

Scott Benner 5:19
She's, you know, she's in their cafeteria, and, you know, yeah, picking and you know, and it's buffet style, etc. So, anyway, it, you know, is it going to be hotter? Is she gonna have more activity? Will it be stressed all the things I thought I was ready for? The one thing I didn't think about was, what if the material failed? Crappy? You know what I mean? So anyway, do you have any questions or concerns before we get going?

Rita 5:47
No, I don't think so. I think I'm ready to go. Sound is good for you.

Scott Benner 5:52
Oh, sounds perfect. Wonderful. Absolutely. So normally, I would ask you to introduce yourself, but this is Rita.

Rita 6:03
Yes, this is Rita. How old are you? I am. I am 63 years old. And I was diagnosed with type one at the age of 57. I live in Georgia. And I am a cancer patient which led to the type one diagnosis my treatment did. So I've got a story to tell. And it is it's quite rare. But I know there's a few of us out there that have gotten type one as a result of immunotherapy. Yeah, so that's my, that's the gist of my story. Yeah,

Scott Benner 6:38
that's something Well, let's pick through it then. So okay. You have children.

Rita 6:44
I have two children. They are 33 and 32. They are adopted. So my husband and I adopted them. When they were just under three years old and just under one year old. They are siblings by birth. And so I adopted them. I traveled to Romania, and back, you know, after the fall of the Ceausescu government, and I traveled there by myself and found these two wonderful kids, and they've been with me, or with my husband and I ever since they are our scientists, married, I have two grand kids. And our daughter is on her own and they're doing lovely,

Scott Benner 7:26
great. Were they siblings in Romania? Or were they to they were they were?

Rita 7:31
No, they were. They're actually brother and sister, like biological brother and sister. So great for them to have each other. And yeah, so that's, that's our family. My husband and I, we were never able to get pregnant. But in the grand scheme of things, it didn't matter, because I got these two wonderful kids. Wow,

Scott Benner 7:49
great. You knew how to do this x and everything. It just didn't work out. Yeah, exactly. everything by the book. That's what I was wondering. You know, it's funny, as you're introducing yourself, and you told me, You're 63. I interviewed a woman I interviewed a woman yesterday was 62. And I asked if she had children, and she said, four, I think. And the last one. She said, well is, you know, my foster child. I said, Oh, how did that happen? And she tells a story about her daughter's friend whose family just fell apart. And her daughter came home one day and was like, we have to take her in. And yeah, and that was like when they were, I don't know, 15 or 16. And now they're in their mid 30s. And that's like, oh my gosh, that's crazy. It's interesting to hear.

Rita 8:36
It's wonderful. Yeah, it's wonderful. And it just shows the, how much a person you can love. Like you just can just love. It doesn't have to be I find it doesn't have to be from me. I just they're just, you know, two great kids and my grandchildren. I am so grateful. So my first grandson was born in August of 2015. And I was diagnosed with cancer in December of 2016. And so the diagnosis was really, first of all extremely unexpected. It is so I don't know if I told you I have been diagnosed with you coastal melanoma in the vagina. So basically, it is a type of melanoma that grows in the mucous areas of the body. So vaginal rectal nasal. You can get it in the eye. And anyway, those are the primary so if all melanomas 95% are cutaneous 5% are mucosal. And of that five, I'm gonna guess. Less than 2% or vaginal. So, this diagnosis, a lot of things sort of, when you hear my story, a lot of things sort of I'm lucky and somebody is looking out for me whether that'd be my higher power or I don't know, it's just the way things have worked out. I've been very fortunate. I mean, really, I shouldn't, I shouldn't be here the diagnosis. I was never told how long I had. But because I didn't ask, I didn't want to know, I had to focus on the positive, but it was not. I didn't know I didn't get the impression from the doctors that this was very helpful. So

Scott Benner 10:26
wasn't very Laissez Faire in the in the room, they're like, well, we'll just work right through this, it'll be fine. It's all about I mean, in an orifice of any kind, I just have to think, like, That's craziness, because and I'm going to want to hit Okay, so hold on. I'm gonna go backwards just for two seconds to tell you something about, about loving people and adoption, just very quick. I'm adopted. As you probably know, if you're listening to the show, and my mom, right, my mom is 80 years old. And as we as we record this, we are one year in one day, past us learning that my mom had cancer. And she had a very, very large tumor, probably grapefruit size on an ovary. She had some cancer in her uterus. And she was given a full hysterectomy at 79 years old. And this came, I'd say, right, as my youngest brother got married, and as my mom was planning to move across the country to live more closely to my middle brother, so he had, he had moved to, you know, college and, and never come back. And she's like, you know, I'm gonna spend the rest of my end of my life with, with Brian. Yeah, and so we're kind of working towards all that my brother's gonna get married, and then my mom's gonna leave. And instead, we're carting my mom to my brother's wedding, in a wheelchair, and we're all standing off to the side, talking to each other going, Hey, Mom looks like she's gonna die. And it came out of kind of nowhere, you know. So we got her right off, we got to write off to a doctor. And she had this procedure, after we had to pick through a number of doctors who all were happy to just manage her into the grave as the best way I could put it, you know, like, nobody wanted to give a 79 year old woman this big surgery, and she's gonna die. And bah, bah, bah. And just Luckily, my neighbor's son grew up to be a surgeon. And I contacted him and he said, I went to medical school with a girl who's, you know, in oncology, ob now, and a couple of text messages later, my mom had a surgery. And, and just the other. It's been, it's been about two weeks now. My mom had it was time she made it through, they gave her a clean bill of health, and you know, she's gonna move to Wisconsin. That's fantastic. Yeah. How do you get her there? Because she can't sit too long. She can't, you know, she needs to get to a bathroom like, so we're like, well, we can just drive her a plane seemed like it wasn't a great idea. We had toyed with the idea of taking her in an RV because there'd be a bed and a bathroom with us. That turned out to be very cost prohibitive. And, and a big and kind of a mess logistically. And so in the end, my mom and I ended up on an Amtrak train across the country together in this little bed, and, and, you know, we spent this day and a half making this trip. And when we got there, my brother was going to pick us up at Union Station. And then I was literally just going to get back on a plane and fly home. So my brother was a little late. And my mom and I are just sort of standing there. She's in a wheelchair, and I'm, you know, I'm standing there and we're talking and it's this odd feeling that nothing's different. We're going to, like, you know what I mean? We're just talking the way we always have, right? And yet, yeah, in about 45 minutes. I don't think I'm ever going to see her again. Or if I do, it's going to be very, you know, sporadic at the best. And yeah, and the way she hugged me before we laughed. My whole I'm telling you this whole story to tell you that the way my mom and I hugged each other before she laughed. I would dare you I would dare you to feel that and and think that she didn't love me the way she loved my brothers. And I'm absolutely I'm the only adopted one you know, and me. me right back to her obviously. So, yeah, I think it's really it's lovely. But anyway, I have so I have a tiny bit of context for what you're about to tell me that I didn't have a year ago so I'm going to do my best to keep up. Can you just tell me when you first noticed the issue and what and how you noticed it.

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Rita 18:17
it was September of or I should say August of 2016. And I noticed I go to the bathroom and I wipe and I wouldn't even say there was blood there was something very light pink. When I cleaned. I said oh that's that doesn't look right. And given my age I go you know, I'm going to call my my primary. I call my primary doctor. I go in to see her right away. And she says well, I can't like as a primary. I can't do an examination down there but I'm going to send you to a gynecologist. I had one but mine had retired. So she put me through they saw me right away. They examined me and they said oh it's probably vaginal dryness. And they gave me a cream and they sent me home and this is now the month of September and I'm doing this vaginal cream. My husband and I had a trip planned with friends to go to Italy I go to Italy this bleeding has not stopped it's like it's always there and it goes away maybe for a day or two it comes back so when it was supposed to they said within 30 days should resolve itself so now it's November and they renew I made I gave a call to the doctor they renew the prescription but it's the month of November and I'm saying I don't know I want him to see me again and I go back in and that morning of that appointment I wake up and I go take a shower. There is so much blood and so much clotting and it was just gross. So I My husband was already off at work. I just get myself dressed and I go straight to my appointment though. I'm about three hours early. I didn't really care if I go, somebody will see me and they did. And they did a biopsy and send me home and they said, Okay, maybe it was, you know, just some clots that were blocking it up. I don't know, whatever. I go home. And I'm still thinking nothing of it. And then they get the results. They call me now we're in December, and the PA calls and she says, Well, we've never seen this, but there's actually melanoma in your vagina. And we're running the pathology again, because the pathologist has never seen it. But in the meantime, you've got an appointment with you know, gynecological oncology and dermatology and all these doctors. So, okay, I still I still didn't want to believe it was that it's like, how can I have melanoma? There I go. I've never heard of it. They've never heard of it. It's a mistake. So it's now December 18. And I go to the gynecological oncology appointment, and they take all the notes, they want to know the whole story. She examines me, and my husband's in the room with me. And she examines me and she says, Oh, yes, I see it, you have a tumor in your vagina. And obviously, it's melanoma, you know, given the pathology. And I'm lying on the table, you know, and she's looking at me and, and I am saying nothing. And she goes read, did you hear me? And I said, Yeah, like, but I'm so confused. I'm looking at my husband. And in my head, I'm thinking to myself, This is my I'm living my worst nightmare. This is what I feared the most that one day I would get cancer. Are you kidding me? I have cancer. So at this point, she says, the location is really not good. And there is nothing we can do. And I said, No, no, take it out. Take everything out. You know, I don't care. Just take it out. And there's got to be chemo. And they said, No, there isn't. But because for melanoma, there is no chemotherapy. And she says, but I will send you to the melanoma surgeon, specialist and to the melanoma cancer team.

So this is Christmas. Now we're at December 18. So I get through the whole holiday. And I have my pet scan in I don't know it was early January, or between Christmas and New Year, I don't remember they do a PET scan to see exactly what they're dealing with. And, and I see the surgeon and sure enough, yes, there is. It's not anywhere else. But it's there. And the surgeon tells me they will have to do a complete hysterectomy. They're hoping the location of this tomb or that they are not going to have to touch the bowel, because if they do, I would get I would have to wear a colostomy bag. And you know, a whole bunch of other and it's a big surge, I gather this is a really big surgery, they had also to remove part of my vagina and all that stuff. So it's a big surgery. And he says, In the meantime, because of the size of this tumor, and I couldn't tell you how large it was, but maybe because of the size and the position of the tumor. We're going to start you on some treatment and that's great. I was willing to do that and I go off and while we're getting ready for to schedule surgery says In the meantime, do some treatment and hopefully it'll shrink the tumor. So I see the gynecological know the regular melanoma oncologist and they have a plan and it's extensive and they're giving you so much information and one of these is a combination immunotherapy drug called epin Evo so I don't know if you know much about immunotherapy, but immunotherapy unlike chemo that destroys everything and then rebuilds immunotherapy actually revs up your immune system to wake it up to the fact that you've got cancer in your body and to attack it. And so I said fine, and of course they run through the list of side effects, which are many and and one of them I remember very well was type one diabetes, but the chance of that was like, less like 1% chance you would get it so what Rita

Scott Benner 24:29
what's the chance to get vagina cancer?

Rita 24:32
Exactly right. So like oh, you will soon find out that I there is a very small chance of getting it I will get it so anyway, I do this treatment, it was fine. I mean, I do the treatment I handled it well. I'm like I'm like two weeks into it like it's every three weeks I think and I'm two weeks into I'm still working I'll also good and then when morning, I wake up and I go, Oh, I don't feel good. I start coughing and couldn't stop. I'm scheduled actually, for another treatment, I go to the hospital. And I had called them I think, and they said, you know, come in, we'll take a look at you. And we'll see what's going on. And of course, what I'd had developed was pneumonitis, which is sort of difficult to breathe. And I guess it's an inflammation of the lungs, I'm not sure but so I cannot have treatment. So I'm put on steroids for 30 days, they stopped treatment, because they said, We don't have time to wait for your tumor to shrink, we're gonna take care of the pneumonitis. Because the way your lung capacity is right now, you're not going to make it through surgery. So we'll take care of the pneumonitis through steroids. And then we'll go straight into surgery, which is exactly what happened. So I had surgery in March. And he did not have to touch the Bible, he did the whole surgery, were good. But I knew I would have to have radiation just because of, I guess the type of cancer it is. And the way they explained it to me, though he thinks he got it all. There's always can be specks of the cancer, you know, sort of around, and we're going to do a radiation in the area, which they did. And now, I finished that in the end, the end of May. I have my pet scan in July, and they're telling me they have told me that. If all is well then then that's it, we'll just follow up with scans every, I don't know, six months for a while or three months. And so I do a PET scan in July, which is you know, the full body scan and they found cancer in the lymph nodes in the groin and something in my lungs. So okay, I have to start therapy, immunotherapy. Again, this time, they're giving me another drug. Because that combo, my body doesn't tolerate it. And they gave me one of the two drugs that were in that combo. It's called off Devo. And I had that and I started that in August. And that went really well. I'm doing very good in early December. I have my PET scan, it's showing things are sort of shrinking, but still there but doing well. And it's December 21 of 2017. And I'm at the hospital for my infusion. And of course every time you do the infusion, they do labs, and I'm sitting at the chair, they've got the IV going, they're just waiting on the labs before they start and the nurse comes in. And she says hey, are you feeling okay, today? I go Yeah, I feel great. She goes, Oh, because your blood sugar's are at 622. I know what? And she says, I got there certainly wrong. And she goes, Yeah, we're going to repeat the blood glucose and they repeat it and comes back. She goes, No, now you're at 530. Doctor wants to see you right away. There's no infusion today. So I go up to the office. And that's when they told me they said, We think you are you have develop type one diabetes as a result of this. So off you go to, to the emergency room and to be admitted

Scott Benner 28:13
reader before we get to that. Yeah, I'm trying to I want to make sure I understand. In the course of two years, you get diagnosed with a incredibly rare cancer inside of your vagina, they take it out, and you're getting treatments, and then you develop cancers and other places, you get more treatments. And then like two years after the initial diagnosis, you get the type one is that right?

Rita 28:38
Oh, sorry. One year rap was temper of 2017. Yeah, I'm sorry. I might have given the wrong one year after

Scott Benner 28:44
No, it was a lot of information I might not have been keeping. Yeah. So okay. Yeah, that's kind of how I want to go over it. You're in his office, you're looking for a window to jump out of or where's your where's your mindset at the moment when he tells you

Rita 28:55
Yeah, I'm, well, sort. So part of it is, you know, cancer, the cancer is such a big thing. That everything else sort of takes a backseat because I go, it's okay. It's okay. Like what is I have no idea what type one diabetes is. I know people get diabetes. I know. I probably know what type two is because you're overweight and you're not extra. You know, like, just the usual what people think type one I have no idea what is involved. And,

Scott Benner 29:25
and you're you're actually living the phrase, at least it's not cancer, because you know what that like, because that's what everyone says, anytime anyone gets sick with anything. It's not cancer, like least it's not cancer. But then once Yeah, once you have cancer, I guess the phrase is, well, at least it's not cancer, but you have way more context for it. Yeah.

Rita 29:48
So my, my thought in my head is well, at least the cancer is shrinking. I don't care if I've got type one. At least this seems to be working. Like I'm still here. Like I've still I've had another year of life. If I've seen my grandson grow up a little bit, like I'm good, you know, it's okay. And so, so anyway, I could tell that they were. I mean, my doctor was my oncologist was, I'm so sorry, this has happened and I'm going so right. Okay, you know, send me two. She says, you know, will you go ahead because we were waiting to be I was waiting to be transported with the wheelchair to the emergency room, and they weren't coming. And so she says, you know, you got, are you okay to walk? I go. Yeah, like, I'm feeling totally fine. And I will say the only thing I had in retrospect, was probably maybe a week before. I was really thirsty. And I did notice that. And again, I didn't, I didn't think anything of that. And, you know, my blood sugars up until that point, were really good. Like, I've never had an issue. So anyway, my husband and I go walk over to the emergency room, and I go, What do I tell them? She goes, she goes, You tell them that your blood sugars are high. She goes, I think you've got type one. She says, But if she's giving you if she's not understanding what you're saying, have them give me a call. This is the oncologist referring to the emergency room doctor. So I get in there. Yeah. And they do my blood sugar. And of course, I'm high and they're taken during the intake, and the doctor is there and the emergency room nurses there. And I just say to her, I go, she goes, You know what brings you in and I go, I told her the story I got you know what, I think I've developed type one diabetes, and she looks at me like, No, you just don't develop type one diabetes. She goes no, I go look, just call my doctor. And and sure enough, that's exactly what it was. But it is immunotherapy. I mean, this was already four years ago, already, it's come a long way. It was so new that even just your regular doctor, if you're not exposed to this, you're not even going to know what this is like, this doesn't make any sense. So that day, I get admitted to the hospital. I am not in the ICU, I'm in the regular hospital. And you know, they start doing all the tests and and I find out that my biggest fear was do I have to give myself insulin like, you've got to be able to give me a pill. I don't do needles like that. I don't do needles, I don't want to learn how to give myself. Like I'm very grossed out by that. I don't know. It's like, I'm sure there's something I am still, I guess, sort of in denial. And, uh, no. I mean, I was in there for two days, they told me they showed me taught me how to inject insulin. And it wasn't too bad. They brought in on, I guess, she's the educator, um, you know, in the hospital when she's there teaching me the formula, like, I don't even remember it now, because I'm on a pump now. But you know, for this many carbs as much insulin and. And looking back, I was told, I was told a number of things that were not right. Which of course, I knew nothing, such as, when you inject insulin, you need to be eating immediately, like, do not be waiting around like, so no such thing as a Pre-Bolus. And, and anyway, so I do this, and I learned and I'm, I'm doing well, I don't know, I made it through I was doing okay, but my sugars were if I were to look back, I think anything, you know, around 220 I considered a victory like, you know, I had no idea

Scott Benner 33:33
was that my brain? I mean, was that because that you had seen a 600 at the hospital and 200 seems much lower.

Rita 33:39
Yeah. And I think they sent me home with something under 250. So they sent me home. And then I remember, this is how crazy I was. And crazy only in retrospect, like three days after this diagnosis, my husband and I, we do Christmas with the kids. And then my husband and I fly off to Canada where the rest of our family is, I don't even know what I'm doing. I mean, I've got the formula, but at this point, I know my sugars are like, really high and I've, I've put in a call to the uncle, not to the oncologist but at this point, I have an endocrinologist. And I must say She guided me through it but I don't know if it's because I was under enough control right now to sort of get through things and we're gonna deal with the nitty gritty of it. Soon enough, you know, just sort of like letter, familiarize yourself with carbs and insulin. We're

Scott Benner 34:35
such a lovely person. Here's what I imagined. It's Christmas. Two years. We'll get to this lady after I've drank myself silly. That's what

Rita 34:45
exactly. She's fine. She's not at, you know, 400 anymore. She's good. So we'll send her

Scott Benner 34:51
on January 5, shall we? Yeah,

Rita 34:54
yeah. So I go back. So I think my treatment was canceled. As my next scheduled cancer treatment was, was cancelled, because I said, Let your body kind of get used to what's happening right now. And, but we'll start it up again, because damage is done. It's like, you got what we feared. And so we can continue and they did. But yeah, so that's, I was gonna say something else, but I can't remember right now, but that whole that whole time period, but yeah, so that's it. So eventually. So yeah, so what happened is that the so the immunotherapy drugs sort of rev up your immune system and it revved up. It revved it up so much that it didn't recognize that the beta cells were were necessary it considered the beta cells something for and I guess and so it just basically killed them all. And so that's what happened. And

Scott Benner 35:55
we'll never know if you had markers for diabetes. Like if you like, Isn't it crazy to think that you might have lived your whole life with genetic markers for type one, it just wasn't happening. And it maybe never would have happened if somebody wouldn't have supercharged your immune system. Yeah,

Rita 36:12
maybe they were there but my fat in my family on either my parents, either my parents died. Nobody. Nobody has any. You know,

Scott Benner 36:20
there's no autoimmune at all.

Rita 36:22
An autoimmune just No, none. None. And so yeah, so it. Yeah, so it attack the pancreas. And in fact,

Scott Benner 36:31
you didn't have kids, so you can't pass them.

Rita 36:33
So I didn't know exactly. And I know that when they did the C peptide a year late. When did they do the C peptide. Initially, I guess I was at 7.0. So I was in the range. But when they do it a year later in 2019, I'm at less than point one. So I was doing well. Until Until then. And then what happened is I got a whole bunch of auto immune really, diseases Yeah, so I develop. So in that period, I develop vitiligo, so I have the which is like you know where your skin uses pigmentation. So I have that in my hands and arms, my feet and legs, I develop colitis, and which has been a Lago is not a biggie. I mean, it's, I can live with that colitis, I'm on medication. I mean, colitis ends up playing a role later on, but I'm on medication for the colitis. And at some point, at this time, I also lose production of saliva in my mouth, mucus is in my nose tears in my eyes, so sort of no mucus is from neck on up. And that was extremely difficult. That was that was a very difficult side effect. Because without saliva, it's difficult to talk, extremely difficult to eat and swallow food. Of course, you've always got a stuffy nose and then the eyes it hurts to blank because there is no no tears. And then yeah, I was gonna say and then when you cry because I'm so frustrated no tears come out and and that's fine with no tears. That's that's traumatic. I can't even cry. I'm saying to my husband is it's terrible.

Scott Benner 38:35
That an autoimmune disease, the no tears, no mucus.

Rita 38:39
So yeah, so they sent me to so that's another thing. So I go to a lot of different specialists at this point, because so they go to rheumatology. I see rheumatologist and really, he told me he goes, this drug is so new. These drugs are so new. We really don't have a track record with other patients. But he looked it up and he sort of it is not sjogrens Because he does you don't have any of the markers I guess or whatever there. It's not sjogrens but it is like a sjogrens. So I'm actually on a drug right now. And I'm not sure if it's the drug that we established all my mucus is or if it's just time, you know, just like because once eventually I stopped this up Devo. It was just it was too much for my body. We had to stop. And it wasn't because they know we stopped the infusions. So yeah, yeah, I was just so I get all that

Scott Benner 39:36
as you said that I thought, well, maybe can you induce sjogrens disease and then that's not but that's not that.

Rita 39:43
No, it's not. No, and I've asked again, you know, I asked the rheumatologist recently. I just want to be clear. This is not short because it is not short because we don't I don't even know that they have a name for this yet that they just know this is happening.

Scott Benner 39:56
I have a number of questions. Can we can we kind of like go backwards for a second here. and picked it up. Thanks. So yeah, all the way back to the beginning just because if I don't ask, I'm gonna wonder for the rest of my life. How do they how do they read? I'm 51. And I feel like I know what the vagina is, you know what I mean? Like, anatomically but like, did they take parts away? Do you still? Yeah. Do you still urinate that way? Yes, yeah. Can you have sex? No, no, okay. Okay, boom, boom, boom. Yeah. All right. How is? What's that? Like? I? Because I think people would, I think it's possible that younger people here 63. And they're like, Oh, you don't have sex meter? 63. But sure you do. And so like, how do you adjust with that? Or is sex the last thing on your mind while you're going through all these things? It

Rita 40:53
is the last thing on your mind. Okay. It really is. Because, you know, it's, I guess when you're faced with living or dying, it is really, for me, at least for me. It is like the last thing on my mind. And so I've had up until now, like, Oh, wonderful, like a wonderful, you know, it is what it is. And you just sort of make it work. And but it's for me, it's okay. Because I still there's so many moment life is made up of so many, so many moments that all those moments make it worth it. You know, ya know, and so a part isn't there. But that's, it's okay. But yeah, it is hard to it is hard to wrap your brain around it. And it's not a decision that everybody would make, you know, I understand that.

Scott Benner 41:55
No, no, I would trust me, you could, if I thought it was gonna save my life, I think you could pretty much take anything from me. So that that makes sense to me. Is it visible? Like what? No, like, from the outside? You can't tell what happened? Never. Okay. Oh,

Rita 42:09
no. And if you were to meet me in the street, and there are people that I see, nobody would ever know. So my cancer is stage four. I mean, it is. So this, this cancer is not even staged. It's not staged, because typically, by the time you find it, the doctors find it. It's really a stage four, so they don't even bother, like the doctors had told me a while back, like, I was never under the illusion that, hey, we're gonna do all this, and it'll go away, and it'll never come back. That was never the way it was presented. To me, it was always this is we're gonna consider this to be a chronic disease. And there'll be periods of time where you're, you're fine, you're clear, and all we're doing our skins. And then there's periods of time where we will find something and you're, you're back in treatment. And it's like my first, well, not my first my surgeon had told me early on when we, before he did the surgery, he said at that time, so this is 20. I spoke to him, I say 2017 As I'm when I'm having the surgery, and he said, there's really like Not a lot, there's a lot of a lot of research in the pipeline for this cancer, because that's not where the funding is. That's not where a lot of the focus is going on. He goes, but there's a lot coming up in the next five years. And it's it's he didn't say it's unfortunate. You got it now, but sort of like but here we are now. And so we got to work with what we have. So my, my philosophy right now, if you will, or my way of getting through it is that science has to stay one step ahead of me, as long as my cancer doesn't progress so far, that they have nothing left to give me. I'm good. Like, I'm fine. I'm willing to try. And in fact, you'll hear that I've, you know, I'm on other stuff right now. So, so that's, you know, that's how I look at it. And and we know you're not to get to

Scott Benner 44:09
before, you've been living like that for about five years now. Yes, yeah. Yeah. So you, you have cancer. It is yeah. And they are beating it back with the the therapies, with with the

Rita 44:23
therapies, some brand new ones, and some that I have yet to try that are just in the pipeline right now that are coming. Some that are not there yet, but some that I know some promising ones that are waiting FDA approval, which should be coming within the next, I think less than a year so I'm just trying to keep I give it all I've got to sort of make that science you know, stay ahead of me and that's how I look at it. But yeah, so when you look at me, you would never know I'm sick. Now I have lost initially from the start of this I've probably lost about not probably I have lost roughly 40 pounds, a lot of that loss came after the diabetes diagnosis. So I'm not sure if, if it's that I am not sure, like what diabetes forced me to do is really, um, cancer was really changed. Both diabetes changed the way I eat in terms of not so much what I eat, because I was pretty good eater how much but how much I eat. You know, diabetes has forced me to be a healthier person, believe it or not,

Scott Benner 45:35
I know that but like a portion you mean, like you just smaller portions?

Rita 45:40
Yeah, it's not, you know, at the beginning, you should have seen me and even now, I just don't do it. My husband does Oh, come on now. I mean, I weigh everything, I weigh my food. I'm a little OCD that way. So I weigh I carb count, I, you know, I do all this, all this stuff. And that's, I have to, it's the one way I can control you know, and anyway, as much as you can, I can control the diabetes, or I think I'm doing a good job now.

Scott Benner 46:10
I'm certainly or what, what, um, do you see a therapist, once the cancer comes?

Rita 46:18
So I, so when the cancer came, there was a support group at the hospital for melanoma patients. And I did that. And then COVID stopped that. So I do. So in the middle of all of this, I find. So between I was I was home for a year following that surgery because I had surgery and then treatment. And you know, it's just, it takes a lot out of you. And I was home. And I decided I was going to do I wanted to do some yoga. So I found a cancer center that had a lot of sort of whole holistic approach in terms of yoga and exercise. And there's therapy there and I do an all through zoom. Now the Yoga I don't do as much because I do work now, but I do I do. Zoom, cancer support. I really you really need it. i I'll speak for myself, I really need it. I am very, I'm very open about what's happened to me. If somebody were to ask, I would, I would certainly tell the story. I think there's a story to tell. But, uh, but I think therapy has helped me help me with that. How about and like I said, if if you were to look at me, you'd never know I was sick.

Scott Benner 47:31
I know. I know who you are. I've seen pictures of you. Yeah. You smoke the weed now. Does that help with? No,

Rita 47:40
not necessary? Not necessary? I'm not I haven't been there. No, no. And you know, through all the treatments that I've had, and it's funny how the mind or the body kind of like, forgets like when I think back. I was like, Yeah, I was I was pretty sick. You know, I was sick. And I look at pictures of myself. And I go, Oh, yeah, I can tell like at the time. I couldn't tell I was sick. But now looking back and seeing the way I am now I go. Yeah, I could tell I was sick. And I was one. At one point. I'm in the hospital for some probably DKA. But I'm in the hospital. And I look in the mirror and I go oh, my goodness, look at the way I look. So I've had those moments. But yeah, what was your question? I didn't know if. Yeah, so not necessarily. Yeah. Like, no, no,

Scott Benner 48:29
no, or anything like that?

Rita 48:30
No. Okay. No, no, no.

Scott Benner 48:32
Wow. Can I ask just getting away from all this for half a second? looking more at the kind of, I don't know, the psychological side of it, I guess. Have has your has your outlook on what life is changed? And, and what your date, what your days mean? And what your time means, like, that kind of thing?

Rita 48:57
Definitely. So it's changed first of all. So I've started meditating. I do that, but I'm actually more I'm really grateful. It's like, I am so grateful for my husband because like, without this, like, I know, I'm lucky. I really despite it all, I am lucky, he has been with me for the whole thing because there are times when you're dealing with all of this, it's just a lot for the brain to absorb. And even now, I mean, I I might look like or I might feel like I'm good. But you know, when you go to those appointments, it's always like anxiety provoking when I have a scan, it's anxiety, provoking all those things. And so I'm grateful for that. I am so grateful for like Mike to see my kids like five years out and okay, this is what they're doing. And now I have a brand new grandson so I get to see him. And I look at the day Yeah, and I just say oh gosh, it's such a beautiful day. I do so much. I do a lot of walking. And I started that early. I started that actually four But before cancer and diabetes, but I do a lot of it. Now I have some extremely great friends that are there for me. And yeah, so I'm so grateful to everything you know. So about yes, definitely

Scott Benner 50:14
things that just eat time like I make a very simple like example, like do you still watch television? Or did you prior? Or is that one of those things where you think this doesn't matter anymore? Like I'm not trying to kill time anymore?

Rita 50:29
No, I'm not trying to kill time. I'm not a big TV watcher. So I don't watch a lot. But I do read a lot of books. I love that. I. So prior to the cancer diagnosis, my husband and I did a lot of traveling. And we've done a few trips where we do walking vacation. So we walked through Spain, we walked through Portugal, we've done a lot of that. And of course, cancer threw a monkey wrench in that because for a long time, I was not this is even before COVID I was not allowed to travel. The doctors didn't want me too far from a good hospital, a hospital that would know what I've got, you know, yeah. And, and then of course, COVID hits, but just and then, and then diabetes and diabetes was I've had some scary moments with it. And it was like, it's scary, but I think it was in October of 2019. So before before COVID I did We did do a trip out to the west to the Grand Canyon and the Four Corners area and I hiked and so that was scary because Okay, I'm gonna be somewhere in the middle of nowhere I got my pump. At this point, I got my pump and my CGM. But it's like, you know, in the back of my mind, oh, man, what am I gonna do? Like, Okay, I gotta bring all the snacks, I gotta bring all the glucose tabs and all those are really, like, heavy on my mind, you know? And even now, like, this evening, we're actually traveling, and we're going to Vermont, and I'm in I'm in Georgia right now. But we're going to Vermont and Okay, I gotta bring all my supplies. And that's all. Don't forget anything. You know, I mean, getting through security. It's like, it all works out. But that doesn't mean I don't stress about it. Just that about.

Scott Benner 52:14
Has there ever been any conversation with you or your doctors about some of the things earlier in your life? And this like, for instance, not being able to have kids? Is that? Is there a possibility that there was something wrong in there the whole time? And you didn't know? Or is the nose? Yeah, there's no way to know about stuff like that, right?

Rita 52:33
There is no way to know. I mean, I know they did some some testing, like genetic testing, but even what I have, and what I understand, and I'm not gonna pretend I even understand what the doctor said. But mine doesn't really have anything, they have no idea. So when I asked the surgeon, he says, who knows, like maybe the invite, like we don't even know enough other

Scott Benner 52:52
people that have it that you could get no, like, no, like some data from people like oh, there's, you know, a certain percentage of them that have had similar other issues in the air. There's not even there's not even

Rita 53:06
now there is a Facebook group that I belong to that is dedicated to mucosal melanoma patients. And so it's the variety of us it's vaginal rectal sinus, but there's not a lot of us. And, and it's, I don't know that anybody has found out the reason why this has happened. I know there is a registry. I've learned through the group, there is a registry forming right now on rare cancers, with the hope that we will have some of the answers. And just getting back to my diabetes. You know, I follow a lot of, I'm always like, sort of looking. That's how I found actually, my husband found your podcast that kind of helped me along. But I belong to I guess it's type one. I don't know type one something. And one day they send sort of like a little newsletter, and in it was they were starting to do research and UCSF regarding they've discovered that people on immunotherapy, very few get diabetes. And I just reached out to that I had a name of a person who they interviewed and I reached out to her. And they they're just starting and this was probably maybe three, four years ago that I reached out and they sent me like a kit like labs to get done. And I just sent my labs off to them. I'll never know what they find. I don't think they're using it for research purposes. But my doctor, my oncologist has said, what they're trying to do is, you know, the patients that do develop type one is trying to find out, is there something is there a commonality in it, or is there something that we could give these patients is there a drug out there? Or do we need to develop a drug that if we give it to them prior to immunotherapy, it will save the beta cells? I think this is what they're working on. But I don't you know, I Google it every once in a while to see if there's any progress made. But I mean in my case is it's too late, I think Um, but you know, that's okay. Yeah. Well,

Scott Benner 55:02
maybe it helps somebody in the future because the therapy absolutely is the therapy is growing. And it's and it's morphing and getting better. And they're trying. Yeah, yeah. Because yeah, look what it's doing for you. It's really back. It's put the cancer in like stasis, right? So you're not getting worse and you're not dying. It's just, it's amazing. Honestly,

Rita 55:23
it truly isn't.

Scott Benner 55:25
It makes me embarrassed for the notes I've written in front of myself, because at one point, I was jotting things down Georgia, not able to have children and I my shorthand for vagina. I made an oval and then I drew a line from 12 to six o'clock. Yeah. No, I drew it. I was like, that doesn't look like a giant at all. But I knew at least what I was doing when I was going. It's just such a crazy. It's a crazy stuff. It's crazy. Yeah. Yeah, it doesn't it doesn't make any sense. So let me ask you, when you got the type one diagnosis, do they give you like, you get to the endocrinologist, the holidays over etc. You're back from Canada from if I'm listening correctly. Yep. You get a pump. You get pen to get needles. Do you get a good? No,

Rita 56:14
I get the needle, I get a needle and and I don't know if this is typical of other type ones. I have no idea but my blood sugar. Oh my goodness. So unstable. It was like, you know, I think I was picking my finger like about 10 times a day. And even that I was I don't know if it was me just being worried. But I was forever. It was and my blood sugar's were like kind of all over the place. So then we are in. I don't know it was an April. Okay, now hold on, what year Am I met? I think it's 29 2018 or 2019. But I'll find out in a second. But I say to the doctor, hey, I at least want a CGM. I've gotten used to given myself needles, can I just get that thing in my arm, which tells me where I'm at. And she goes, Well, if you're gonna have that, I want you to have a pump. So they they give me the pump and I get a pump. I don't, I don't even know There's choices out there. So I get it. I get the Medtronic pump with the CGM. And I said, Great. So they started me on the pump. And again, thinking back and telling you the story. Another crazy thing that we did is I get the pump on a Thursday, and I made the pump trainer. And she sets me up and shows me how to do it. And we're all good. And the next day, we're heading to a wedding, three and a half hours away. And I thought nothing of just sleeping because like, Okay, I'll have my pump, it'll be great. And I'll go. So we're driving and my sugars are going up and up and up. And I'm just pumping more insulin and I really don't understand what I'm doing. Like I have an idea. But I go this is not working and I'm not I'm eating and my sugars are like in the three hundreds and I go Why isn't this supposed to be better? And I do call the endocrinologist on call at the hospital. I'm like three and a half hours away. Watch your sugars, you know, increase your Basal like, bah, bah, bah, you know, whatever, whatever. She told me, I'm doing all this well, by the Saturday morning. I was so sick. I mean, literally, I'm on the floor. And I said I have to get to a hospital like I don't feel right. This isn't good. And I am not going I don't know if I mentioned when we were in Knoxville and nothing against Knoxville, but I want to go to my own hospital, because I'm still thinking of the cancer and I just want to be where people know my case. And I don't want to have to explain all this because this is you know, rare and so we make the three and a half hour three hour trip to back to I'm in Atlanta

Scott Benner 59:02
back to Atlanta and DK

Rita 59:05
and DKA I don't know it so I get to the hospital and they're waiting for me. You know, we had made the call, go straight, do not go home do not do anything straight to the hospital. They take my sugars. I'm in DKA and I ended up in the ICU but you know in the emergency room they take off my infusion set and my cannula so then cannula I wasn't getting any of the other the insulin I was pumping in that easy.

Scott Benner 59:31
Yeah. Yeah, you too. You're too early into it.

Rita 59:37
I am Yes. I don't know. I don't know what, you know, what, what, but what I was doing really, I really shouldn't have gotten on the trip, right. At least I should not have started the pump when I wasn't going to be home. And so I'm in DKA. And at that point, the endocrinologist says Oh, no, I don't have a I don't think I had the CGM then and he says no, we're, the CGM is Like I don't care about because they were saying, you know, do six weeks with the pump to get you used to it. And then we'll bring a bill introduced the CGM, and they go nevermind all that CGM for you right now. And I did that. And and that certainly helped me a lot. I did have another episode of DKA. In. So this was I looked at my notes, this one has happened in May of 2018. So six months after diagnosis, I got the pump. And then in November of 2019, I did end up with DKA. Again, I really don't know how that happened. Because I was really, my sugars were not terribly high, and I'm gonna call it in the baby. I mean, high in the 250s, but not enough for me to, and then all of a sudden, I just didn't feel good. And once again, it was DKA. And that was the last the last time I was in the hospital for diabetes.

Scott Benner 1:00:54
Do you ever firmer grasp you do now like your husband found the podcast? Yes.

Rita 1:00:58
That's so this is. So here's a funny story. And so it's Yeah, so he's a big podcaster. And, you know, I don't even know what I'm doing. I go to a nutritionist who was no help at all. Because when I tell my endocrinologist, what she's asked me to do the nutritionist in terms of what I eat and donate, she goes, Oh, no, she goes, she's treating you like a type two. Forget that. That's not, that's not what you're supposed to be doing. She played with the settings a little bit. But anyway, he finds your podcast. And I listened to it. And then it is. I see that you guys, you and the whole bunch of diabetic specialists, if you will, are coming to Atlanta at a JDRF event. And that's February of 2020. Just before COVID

Scott Benner 1:01:46
Were you there.

Rita 1:01:47
I was there. But this is what happened. My husband goes and see you because again, you never leaves. You know, he's so in this with me. He listens to you. And I go listen to Jenny. Yeah, Jenny.

Scott Benner 1:02:00
Same time with the first the first hour. Yeah,

Rita 1:02:04
yes, you're right. Yeah, unfortunately, you're talking at the same time. And we get in there. And that was actually very enlightening, because we get in there. And it's full of people. And all these young I mean, these young kids. And it was funny because we go to lunch and my husband goes to see these people, they're eating everything nobody's waiting. You need you need to be like that read a lot is like waiting and watching it. And so yeah, I we learned a lot on that trip. And in fact, if I can say I had Yeah, I did hire Jenny. And Jenny has helped me tremendously through managing all of this. I mean, she's sort of, you know, I go to the doctor now. And they don't even Oh, look at these numbers that you're doing great. Keep it up. They don't just they don't adjust anything, Jenny.

Scott Benner 1:02:57
And I don't talk about it, of course, because she's a professional health care provider. But I'm aware that a lot of people that listen to the podcast, see Jen Yeah. And so it's it's wonderful that you? Did you see Yeah. So did you see Jenny and I speak together in the second hour? No, did you go to something

Rita 1:03:17
was I might I might have gone to something else.

Scott Benner 1:03:21
Read it was your mistake. We were delightful.

Rita 1:03:23
That was the one thing I've done wrong. Yeah, really,

Scott Benner 1:03:27
if you if you've made any mistake, really, it was not seeing to me and I speak together.

Rita 1:03:32
But that that event was so helpful, like in so many ways, like really helpful to hear, you know, the speaker speak helpful to see the people helpful to see parents and, you know, vendors, like just everybody. I thought that was, that was a pivotal point for me. I really believe that.

Scott Benner 1:03:50
Yeah, the person who ran that event did a wonderful job. And I don't know if they're, I mean, it's the JDRF I don't even know if they're doing this stuff in person anymore at some of these places, to be honest. But God, I think it was Kim, right? And

Rita 1:04:07
could have been, I'm gonna look. I don't think they've had one in Atlanta because I would have no,

Scott Benner 1:04:13
I would have seen it. I'm not going to use her last name. Because it's, I don't know, it's not my business to say but Kim was terrific. And she set up an amazing event. And then we all bug the hell out of there because the world was coming to an end.

Rita 1:04:26
Yes, exactly. After like two weeks later, it all sort of fell apart.

Scott Benner 1:04:29
Flight I took home from Atlanta was weird, like walking dead empty. And like so much so that it was clear things were happening. You know what I mean? I was like, Oh, this is it. I guess people are serious about this COVID thing. And I had three seats to myself my I like I flew home like laying across three seats, because there was just no one on the plane. Nobody there and but I never I didn't meet you at that event or your husband.

Rita 1:04:58
You did not meet me. No, you didn't make a and I'm not sure that he went up to you like, of course at this point, we're just I finally started listening to your podcast and mid maybe fall of 2019. So yeah, so no, I didn't I didn't meet you there. But anyway,

Scott Benner 1:05:21
I want the real story. You didn't you're like the guys he's okay but this Johnny's

Rita 1:05:25
he's okay you take the guy I'm gonna go to you

Scott Benner 1:05:30
because you tried to nutritious and didn't get good help but Jenny's Yeah, different.

Rita 1:05:34
Yeah, no, I mean, it's totally different. So yeah.

Scott Benner 1:05:39
i It's i I'm sorry, they don't do those things anymore. But the JDRF seems to? I don't know. I don't know, they changed. They changed direction during COVID. It seems like to me about the in person stuff, but for at the very least, so. Okay, so you're so now you're using a pump? What do you that is an algorithm to are using control like you are on the pod five or something like that? Are you still managed? Yeah,

Rita 1:06:04
no. So I saw I know, I'm Medtronic I actually don't do I don't you know, they have the auto mode where it sort of does it for you. I don't do that. I do manual mode. And I prefer that I like to have. I like to control it myself and sort of figure out

Scott Benner 1:06:22
I'm sorry, using CGM from Medtronic. I am your

Rita 1:06:27
I'm on. And I'm on the newest pump. The seven. I just got the 770. And I'm doing well. I find their CGM quite accurate, actually, compared to the 670. And yeah, and I'm doing well. And I've, you know, I've got my rates sort of dialed in, I think. So I'm probably I'm up probably about 93% and range. And my, my agency back in April was 6.2. So I could bring it a little, a little lower. But where I am right now, I'm happy. I mean, compared to where I started. Yeah, I'm not. I'm never rarely Am I low? Like I think I'm less than 1%. Low. And, yeah, so

Scott Benner 1:07:17
I think you're about to be famous at Medtronic, because right now I imagined someone's running around the office going someone finally said something positive about our CGM.

Rita 1:07:27
Yeah, I mean, and, you know, I just got the new one and part of it is like, Okay, I had an option, I suppose. But, you know, I don't feel like starting over again and dealing with insurance and get it I was like, oh, nevermind, it's just too hard. And it hasn't been, it's been fine for me. So I just said, I'm just gonna keep keep doing what I'm doing.

Scott Benner 1:07:50
That's exactly the attitude that helps me stay married. Because Kelly's probably just like

so much trouble to get the sofa out of here and

Rita 1:08:04
all of that. It's like, who needs that?

Scott Benner 1:08:08
Wow, that's amazing. We're up on an hour, but I'm not rushing you away. Is there anything else you want to talk about?

Rita 1:08:15
Ah, no, I guess the only other thing I'd like to talk about that people don't maybe doctors don't understand is how difficult it is for type one diabetic to get a PET scan, I find it probably one of the most stressful things that that happens and I don't think enough doctors understand what is involved. So when I have a PET scan the night before, okay, I got I watch what I mean I don't watch what I eat. But I tend to eat a little you know, a careful because I want my blood sugar to stay at range because for the PET scan, I am not allowed to Bolus or eat anything. I think it's six hours ahead of the of the scan. So I do do the scan first thing in the morning I usually you know we schedule it then. But and it isn't so much that I go high because I'm not because with the high I can I can play with the Basal but it's when I go low and yes, I can play with the Basal when I go out but I cannot take a glucose tab I cannot eat anything I can't so I have to keep it within a certain range without really the aid of any insulin. I do have Basal going into the last till an hour before. But I find that is extremely stressful. I've gotten better at it because I've now I've had many PET scans but I think it's something that is not understood. And in fact, when I first I didn't even have the pump, but I was having a PET scan that day and it was at the wrong time of day and you know I think they scheduled it for the afternoon which is terrible and my sugar's are climbing and I call the endos office See, what am I supposed to do? And they said, Oh, just give yourself go ahead Bolus. I didn't know I wasn't supposed to. So I get to the PET scan. And the tech technologist says to me, you didn't give yourself any insulin, did you? And I go, Yeah, actually, I just did to bring down my sugars. They go, Oh, you're not allowed no PET scan. I go what? And I think the trauma of that visit, I mean, I started to cry, they, they called the radiation oncologist in to talk to me because I said, it doesn't matter. I'll just wait here to the Bolus sleeves, and then you're going to do the PET scan. And they go, No, we can. So they brought in the radiation oncologist who finally explained to me that I was going to be scheduled the next morning, they couldn't do it, because they'd get a false reading on the test. But I thought, like, as a patient who I'm about to find out, this test is going to tell me if my cancer if my my treatment is working, or not working if my cancer has spread or not. And for you know, doctors to not know that's I thought that was so basic. You should know that I would think

Scott Benner 1:11:10
Yeah, so you're saying that they just tell you Look, come in tomorrow, this, this happens to a lot of people like there are a lot of tests, like there's even fasting blood work, where they say to you like you can eat after midnight. And then that's a lot of pressure. What if I get low and I need to eat or what if you know, but you can't even Bolus like so you can get a Basal insulin, but you can't put a Bolus. And that doesn't make sense to me. So I'm trying to figure out why that is. But I guess

Rita 1:11:34
what I'm thinking is the Basal sort of mimics your pancreas right, sort of slow and steady. And that's okay till about an hour before and then they have me turn off my pump. And I you know, I remove everything from me. But yeah, and so I think it's Yes, exactly. It is like extremely stressful.

Scott Benner 1:11:53
And in the way they say to you like it's nothing like just don't eat or drink until you

Rita 1:11:57
Yeah, it's like, it's no problem. And you know, and the other thing that that really gets me is, you know, I have all of my you know, I got the pump and I got the CGM. And it's always a production, because I can't go in with them. Like, I can't go in with this equipment. It says so in the literature. And I'm guessing it's the same thing for all the other companies, you can't take these devices into MRIs and PET scans and stuff. And inevitably, every single time Oh, yeah, it'll be fine. And I go know the literature. And I'm a rule follower. And the literature says you can't take it in. And if it says you can't take it, and I'm not going to take it in, and I can't put it anywhere. So, you know, I give it to my husband, who then leaves the area and, and we're all good. And it's only when I say well, okay, I will bring it in. But if it breaks, you guys are paid for it. And then they go home. No, no, you please do, which. It's like,

Scott Benner 1:12:52
we just had this for Arden, right? Where she did have a fasting test in the morning. And we're in the office the day before. And the woman's like, you know, the nurse, she says, you know, no eating or drinking after midnight. And I said, Well, can you tell me? What if her blood sugar starts to fall? You know, are we able to stop that? Or do we have to call the test off? And she goes, No, you can give her insulin. And I went, Yeah, that's not how that works. So I'm like I said, I said, I think I can do a pretty good job of keeping her blood sugar stable. I said, But if she gets too low, she might have to drink some juice. Would that be okay? Well, yeah, you're not supposed to. It's like so if we do, do we call and cancel? And she just right doesn't have an answer. I'll go to the doctor, she comes back out comes back in and then you get a blanket like don't eat or drink. And if it happens, you know, you can cancel. But I don't even think they know if that's like Artemus just having a again, an endoscopy. Like they were just gonna throw like, what a little bit of? I don't know, you don't I mean, like, Could she have sucked on a lollipop like and nobody. But you're talking to somebody who told you to take insulin if your blood sugar gets low. So you're like, Well, are they really going to have an answer for me? No, it just seems like the answer is no. And, and but it said to you so blase. Like, oh, just don't eat or drink after midnight. And immediately you're like, Well, I don't know if I can do that or not. And then you have other stuff on top of it like that. The anxiety of like, nobody gives a crap if they don't get a blood test tomorrow, but you're trying to find out if you're, you know, right, yeah, your life. And,

Rita 1:14:30
and I think the other thing that they're, you know, because they'll ask, and do you have diet? They don't say type one or two. Do you have diabetes? Oh, yeah, they don't do this. Don't take your pills don't do. No, but I'm not on that. I'm on insulin, do I take insulin? And they sort of like, yeah, you know, like, not really. So I don't even think, you know, it's just like, you're just reading a script and it's just diabetes and to them it doesn't really matter which one it is though. Type two can go without eating for for six hours. hours and not worry about blood sugars, I guess. And of course, you know, for for type ones it's the battle is the challenge is a little, a little tougher. So anyway, so that's the one thing. I'd love to like, Oh, I wish and I'm not even sure you know where you begin? I mean is it? Is it the, you know, like that there's so disconnected, right, the radiology department with maybe endocrinology, like, you know, really you sort of got to know like, if you're sending a patient or if a patient calls, you said, Hey, I'm gonna have a scan, can I not? You know, can I do this or not do that, that they would sort of have a real answer, not sort of like somebody that really doesn't know. And really, it's no difference to her if I get a scan or not. If it's canceled or not, you know, does she care now becomes my problem. So that's, that's such that's the biggest challenge. That's a very big challenge.

Scott Benner 1:15:53
You know, I saw my mom is now with my brother, right? And my, my brother is handling a lot of my mom's medical stuff for the first time, and I think he's finding it overwhelming. And I said, Can I give you a piece of advice about talking to doctors offices? And he's like, sure, I said, you have to find a very polite way to do this. And he goes, Okay, I said, but you're telling them what to do. You're not asking. And I said, there's a way they do things. And that might work for most people. And I said, But, but if you're not getting the answers to the questions you need, or if they're not doing something that they need to do, there's a way to say what you need without being demanding. And you almost are, I really do feel badly saying this out loud, but you're kind of directing them without letting them know you're directing them. Right. And I and it's important, because they can't know all of your details. And, and there's no way for them to know. And oftentimes you're talking to people who have answered ads for jobs, who are schedulers, or answering phone calls, or they sometimes they're not even nurses, and you know, they don't really know. And you're asking them these big questions, because they're your point of contact, but they don't have an answer. And then, you know, sometimes they just say the first thing that comes to mind or what they hear other people saying or what worked for somebody else, and you can't get frustrated with them, you sort of have to say, this is what we need. I need you to call this person, I need you to fax this document. You can't just say, I want you to set this up for me, because they might not know what that means to you. Right. Yeah. And he's having a better time. But now that he's been more, I guess, proactive.

Rita 1:17:40
Yeah, and yeah, and the same thing I find when I was in the hospital, you know, and I'm with my CGM and popped out. So I think. I think in some of those visits, the pump came off obviously, because of my bent cannula. And so they had to bring my sugar's back down and did it through an IV and all that, but you know, I really tried to keep to get back on everything like really quickly, you know, and I try to be like, inevitably when a few times I went in there take they're taking my I have no CGM on my arm and they're taking my blood sugars, and it is what it is, you know, whatever, they take it, and I go, okay, and you're coming back in like, couple hours to do it again, right? Oh, no, you're scheduled again. To do your to do your your, you know, we're going to check your blood, like at six in the morning, let's say and I go no, no, I can't go for six hours without, you know, without a checking. So I've learned that. You know, I've been in the hospital a few times. Now that you know, the format before my husband leaves the room. I said, Bring me my CGM. Bring me my, not my CGM, but my glucose monitor right in front of me because during the night, I'm going to check my own sugar. Right? And sure enough, sure enough, one night, I go, you know, I opened I was sleeping I opened my eyes ago. I just don't feel right. And I checked my sugars in there at 40. So I rang the bell and they all come running and I said to them, I told you guys don't let me go for six hours. You know, so. So in all this to say you sort of have to be your own advocate. And I guess that is sort of what you're saying. You don't have to be mean about it, but it's just sort of yeah, like I know what I need to talk about here. It is

Scott Benner 1:19:21
the number of people who will tell me privately when they're done recording that when they're in the hospital, they have family members sneaking their insulin and stuff like that and they take care of themselves and won't even tell the hospital because the hospital wants to run you like a type two on their protocol. Yeah, you know, I'll test you again in six hours, which is insane. And by the way to healing and overall health is optimized with in range blood sugars. You can't exactly can't heal with a 300 blood sugar. It doesn't work that way. So

Rita 1:19:55
no. I was fortunate enough that during one of my hospital visits, they endocrinology sonkar was actually my endocrinologist. So he knew he saw my numbers and they can look at the chart now and he knows. And he said to them, have her put everything back on. She's going to tell you how many carbs she eats, don't worry about the insulin, she's taken care of it all herself. Yeah. And that was so much better and even now, I've had a few surgeries since you know. You know, subsequently after your story, I told you I've had a number of surgeries and even then into surgery now I most anesthesiologist say just leave everything on and we'll and I just reinforced that you better be checking my blood sugar's which I know they do, but they just sort of want to see how it looks no leave everything on because I think for them it's actually maybe easier I don't know but they're fine. They're fine. It

Scott Benner 1:20:44
would be a damn shame that if vagina cancer and melanoma is different places and and lymph nodes and everything that that doesn't kill you, but you're gonna get taken down by by a nurse. When she goes, that's not gonna happen. That's not the way I'm gonna go. Yeah, cuz I imagined your last conscious thought would be son of a bitch.

Rita 1:21:12
Yeah, like in my head, like you're saying Be nice. And I am nice. But in my head, I always say you don't know what you're talking, I could I can do this. It's like, you know, I know what, just leave it all in place. And it's good. And just go look at my you know, go look at my charts. And you'll see where my blood sugars are at. And but yeah,

Scott Benner 1:21:29
I spoke to a nurse recently who had such a good, I thought way about this. She said, with people with diabetes, we see people who are completely just miss managed, they don't know what they're doing. And then it's hard to believe anybody knows what they're doing. But the way we handle it is we start off by saying, Alright, it's on you. But if you drop the ball, then we're going to take over. And I think that's a I think that's a reasonable way to do it.

Rita 1:21:58
Yeah, I think it is. Yeah, I think that makes sense. Yeah. And they don't know us, right? I mean, they see so many patients and you know, I know myself but they don't know me and that's understandable. And so but I like that approach of let's look at you can deal with it. Let's let's watch what you do for the next little bit but if it doesn't work, you know, we're taken over and and that's fair, because not everybody manages their diabetes. Well, I guess you know, so we're

Scott Benner 1:22:27
safely for for the situation. Yeah, what were you this was terrific. Please thank your husband for finding the podcast for me. And I appreciate that you came on and share this story. It's at absolutely insane. It really is. Thank you so much for doing this.

Rita 1:22:43
Thanks for having me. scars.

Scott Benner 1:22:43
No, it's a pleasure. It's fun.

A huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juicebox. You spell that G VOKEGLUC AG o n.com. Forward slash juicebox. I'd also like to thank reader for sharing her story. And of course, the Contour Next One blood glucose meter for sponsoring this episode contour next one.com forward slash juice box get a great meter, get the Contour Next One.

If you're looking for a way to give back to the Juicebox Podcast look no farther than telling someone else about it. Helping the podcast to grow in listenership is helping the podcast. Show people where to listen in an app online. Tell them what it's done for you. Tell them what you've learned from it, what you love about it. Just share it. That's all I am asking. That's it. It's a it's a short ask. That's it share the show. I mean, listen, if you love it, and you're like crazy, love it, then go to the app you listen in and leave a beautiful rating and a review like five stars and a calm. What's the word? I'm looking for a complete description of why you liked the podcast that also helps the show. Just the same? Well, it's not me sharing, it's better. If I'm being honest, if you can only do one thing, share the show with somebody else. That's the biggest deal. Also, don't miss the private Facebook group. It's terrific. Juicebox Podcast type one diabetes, absolutely free. 30,000 people on it. Head over there. Now people just like you using insulin looking for help looking for support or giving it Juicebox Podcast type one diabetes. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#774 Too Much Bumpin'

Jenny is the mom of a young type 1 and she wants to talk about her caregiver anxiety.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 774 of the Juicebox Podcast.

On today's episode of The Juicebox Podcast I'm speaking with the mother of a child who has type one diabetes, who recently became more anxious about type one than she was previously. Today we talked about 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. If you have type one diabetes, and are a US resident, or are the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juice box. Fill out the survey. When you complete the survey. You're supporting people with type one diabetes, you're supporting the podcast and you might just be helping yourself. T one D exchange.org. Forward slash juice box. If you're looking for a community around diabetes, look no farther than the private Facebook group Juicebox Podcast type one diabetes it's free for all and has over 30,000 members ask questions just lurk do whatever makes you comfortable Juicebox Podcast type one diabetes on Facebook this episode of The Juicebox Podcast is sponsored by touched by type one and tickets are on sale right now at touched by type one.org For touched by type ones dancing for diabetes annual show. The 22nd annual dancing for diabetes showcase will take place on Saturday November 5 at 7pm at the DR Phillips Center for the Performing Arts in Orlando, Florida. Check it out at touched by type one.org. Today's show is also sponsored by us med you can get your diabetes supplies at US med just like we do to get your free benefits check, just call 888-721-1514 or go to us med.com. Forward slash juicebox. US med accepts Medicare nationwide and over 800 private insurers. They always provide you with 90 days worth of supplies and fast and free shipping. They carry everything from insulin pumps and diabetes testing supplies to the latest CGM like FreeStyle Libre three, and the Dexcom G six. better service and better care is what you can expect from us Med and they have plenty of practice having served over 1 million diabetes customers since 1996. Us med.com forward slash juice box the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omni pod dash, the number one fastest growing tandem distributor nationwide. And they are the number one rated distributor index. com customer satisfaction surveys. Not only that, but that's where Arden gets her Omni pod and Dexcom supplies from us med links to us Med and touch by type one can be found in the audio app you're listening to right now in the shownotes of that app, or at juicebox podcast.com. When you use the links, you're supporting the show us med.com forward slash juicebox touched by type one.org.

Jenny 3:31
My name is Jenny. I've got two sons. One age 10 One age seven. It's my 10 year old that has type one diabetes. He was diagnosed when he was two. So we've been doing this for a while now.

Scott Benner 3:44
Wow. Okay, eight years. You're married? Yep, I'm

Jenny 3:48
married. Okay.

Scott Benner 3:50
And you said you're part of the Utah fan club?

Jenny 3:53
Yeah, I know. You got a lot of Utah fans. So I'm definitely part of that. I

Scott Benner 3:59
certainly do. I appreciate this, Utah very much. And other states should do the same. I don't know how you guys get information around. But But I wish you I wish you would share it. I assume there's like a Mormon WhatsApp, or something like that. Or

Jenny 4:16
no, we're not Mormon, but it's out there. There. There might be I don't know. It's blood outside

Scott Benner 4:21
of the religion and into just Yes. But a higher PR people. It's gonna be three Mormon ladies. And I think that's gonna do it for me, because they're amazing. It's spreading information around. And I know. Well, that's that's so cool. You've been in Utah your whole life. Yeah. Nice. Nice. It's one of those places that when people try to get me to move somewhere, the pictures they send are astonishing.

Jenny 4:46
Oh my gosh, you tell so great. And when I was growing up, I wanted to get out. You know how it goes. It's like, oh, I want to I want to get out I want to go somewhere more liberal. And then as I grew up, and you know, just started having kids and stuff. I'm like I love this place. It's beautiful. Well,

Scott Benner 5:02
I live in New Jersey, it is not beautiful. Oh, okay. I mean, it's fine and all, but I noticed driving art into college as we went down the eastern seaboard. And I was like, with the exception of how the kinds of trees change, you could you never know where you are. It all looks sort of the same. But every picture someone sent me of Utah, I'm like, Oh, that looks like Utah. So yeah, pretty cool. All right. So you've, let's say your kids 10. had diabetes for eight years. Have a second child who's seven? Is there any autoimmune in your family, the beyond the diabetes?

Jenny 5:39
Well, my brother actually got diagnosed with type one diabetes when he was 29. And that was about 13 years ago. And so that came out of nowhere. And it's funny how little you know about type one diabetes until it affects your life. Like I, you know, he got it. And I was like, oh, man, that sucks. And, you know, over the years, I'd be like, how's your diabetes, you know, and he's like, oh, you know, fine. And I knew it had something to do like around food. I didn't even know there were two types of diabetes. And so when my son got diagnosed, I called up my brother, and I'm like, do you type one or type two? He's like, type one. I'm like, Oh, my gosh, I can't believe this. Like, this is what you've been doing. He's like, Yeah, so I was like, Oh, my God, you don't know until you know.

Scott Benner 6:30
Did his Christmas presents? Did they get better from you? Were you like, Oh, I haven't been nice enough to him over they totally, totally.

Jenny 6:37
I'm like, oh, man, I have such respect for you, dude.

Scott Benner 6:39
So Oh, that's interesting. What What's the age difference between you and your brother?

Jenny 6:45
So I'm 46. He's 43. So I'm a little older,

Scott Benner 6:49
but you're close in age. So are you close? Generally speaking?

Jenny 6:53
I can be we weren't growing up. Now. It's like, you know, how life family life gets. It's like we talk on the phone, you know, every few weeks and check in and he recently moved to Idaho. So I don't even get to see him like, as much as I did. We're not super close. But I mean, he's, he's great. And we talk sometimes, and yeah, but you know,

Scott Benner 7:12
but close enough that my inference, by the way, was to pick your family apart. But it was it was to say, like, you guys were talking to each other. And it didn't occur to him to share what his type one was with you. And you didn't ask too many questions, either. Is that fair?

Jenny 7:29
Yeah, yeah. Yeah, I was just like, you know, he's, he's got this. And, you know, I did, I was concerned about him. I'm like this. This seems like a thing. And but yeah, we didn't, we didn't talk too much. And we weren't seeing each other very much. And, yeah, he would give him shots, kind of like, privately, you know, when we would get together and

Scott Benner 7:52
so, so when your son was diagnosed, how soon until you went to your brother and said, Hey, you got this kind of diabetes?

Jenny 8:00
Oh, in the hospital, I'm like, I'm like, bro. I'm like, you know, my son just got diagnosed. You know, in the hospital, I'm like, do you have type one or type two?

Scott Benner 8:12
Well, obviously, we can see that we can blame your parents for this. So that's good. It gets it off of you. Well, that's interesting. But no other Hashimotos thyroid stuff, celiac. Nothing like that.

Jenny 8:26
You know, you know, on my mom's side, there's some thyroid stuff. I think my aunt might have Hashimotos. Yeah, so there's some thyroid stuff. And I've been checked for thyroid. I don't have any of that. We, the rest of our family did do the trial net thing, and we don't have the antibodies.

Scott Benner 8:42
Well, that's good. That's good. It must have been comforting to know. Yeah, yeah. Okay. So you sent a very specific note, Jenny. Yes. So I don't want to beat around the bush, I want to get a dive right into the bush, if you don't mind. Let's do it. So I'm just going to tell people what you said. And then we'll just start talking, you said, I'd like to go over my sudden, extreme anxiety over being the caretaker for my type one son. So even though you've been doing it for seven years, you said his agency is terrific. You're looping so you have the backup of an algorithm. You now are just experiencing what you're calling almost debilitating anxiety around the management. So, so let's talk first about prior to when this happened. Did you ever have feelings like that leading up to this or did they just come all at once?

Jenny 9:36
Um, you know, I have had a hard time with diabetes since he was diagnosed. I mean, it is just a tough disease. And I never felt super comfortable. But in the first years, so when he was diagnosed, I was eight months pregnant. And so like a month in, I've got a newborn and diabetes, and I'm like, Oh my gosh, this is the heart First thing I've ever done. And so like, I'm just drowning, trying to figure it out. And so the first few years were kind of a blur. I'm like, doing the best we can here. And then I started looking around for a podcast, and I found yours. And so I think I found yours in 2018. So we've been listening for four years now. And I mean, you really turn things around for us. But to answer the question, yeah, like, I've always felt like some uncertainty, like, I like this is hard. And then, about six months ago, my mom passed away. And it's, she was 70 had COPD. And it was, it was time for her to go, she wanted to go. It was bittersweet. And so I mean, it was, you know, it was it was, of course, a big thing. And, and then after that, like all of these things, you know, it's like all of these busy, things started happening. And I felt like I couldn't process it. And then I started to feel this anxiety around diabetes that I hadn't felt before. And part of it was, I feel like, the more we listened to you, I feel like the more we know, and it's like, the more you know, the more you realize you don't know. And so I was trying to get the Pre-Bolus, right, I was trying to, you know, get the Bolus, right. And it's I was just not doing a great job. I feel like I'm still not doing a great job. And

Scott Benner 11:40
so So is your is your first concern, that you could be doing better? And that you're not? Or is it about safety? Where do you work? Where do you feel it? Or is it does it feel like it's everything?

Jenny 11:55
When I think about it, I don't think so much about so much about safety, I know that we can get him if he's high or low. I know, we can get him back where we need to, it may take some time. But it's just like the constant effort of it. Like, we do so many interventions during the day, you know, it's like we are, you know, I'm texting him at school. And I'm like, give yourself a quarter. Give yourself a quarter have a glucose tab, you know, eat to sour patch kids, like, it's, it's like, during this time, I'm feeling better now, by the way, like I reached out to like a number of people and tried to get support and help and I'm feeling way better. But it's still there. But my concern is, I feel like I could be doing better. And I don't know how, like i There are so many variables, that it's so frustrating to me. I'm like, Oh my gosh, she's going Hi, did I miss on the Bolus? Is the pump having issues? Is he just reading Hi, today? How much should I give? I don't want to give too much. And so just the ongoing uncertainty of it was just wearing on me. I felt like it was like, after seven years, I was having this major burnout, major anxiety. And yeah, I was like, almost having panic attacks. Like, at every meal. I'm like, is this gonna be the right amount? And I would just stare at the number. And I'm like, I can't live like this. Yeah.

Scott Benner 13:34
Jenny, let me ask you something. So in the note, you mentioned, like a five for a one C? And so is he having a lot of lows?

Jenny 13:43
Yes. Yes. That's another thing. What do we want to talk to you about? What

Scott Benner 13:46
are we calling low? And what are we calling high? So let's do that. Now before we start, like when you said like, you know, I don't want there to be a high at a meal. Like what what number it is, makes you say that?

Jenny 13:58
Um, around, like, 140 like, will usually give him a quarter around 120. You know, like, just to, you know, we're just trying to, like, serve it, you know. And so, but like, if he's like, heading up to 140, and then 150. And then when 60. So around there, I'm like, he's high, and I've missed, and then low. He goes below 70 Every day, like, I mean, he and he hits like in the 50s almost every day. So he's like getting hit, we're getting a lot of lows, like I'm correcting a lot of lows. And so are you causing

Scott Benner 14:34
the lows? By over correcting? Like, higher numbers? I mean, because Because 140 after a meal in my opinion is like there's nothing wrong with that. I understand. You don't want to go 160 7080 You don't want to get into that climb. But I mean, what would happen if you didn't throw a quarter in at 140? Do you ever just watch it to see what would happen?

Just a brief 22nd Reminder go to touch by type one.org to get tickets for their dancing for diabetes annual event being held on November 5, at the Dr. Phillips Center for the Performing Arts in Orlando, Florida, touched by type one.org. And of course, the FreeStyle Libre three is available right now at us med.com forward slash juice box or by calling 888-721-1514 Check out us med for your diabetes supplies

Jenny 15:45
you know, sometimes I will and it'll turn around. Other times, like I just don't know what it's gonna do. You know, I'm like it. Sometimes it'll go like to one ad and I'm like, oh, man, I should have corrected, you know, but yeah, I think

Scott Benner 16:00
but more often than not, you're correcting and then you need to stop a low later. Yeah, yeah. So I

Jenny 16:06
feel like I am creating a lot of the lows.

Scott Benner 16:09
Yeah, but you can't stop yourself. Yeah. Oh, what's that about? Jenny? This is gonna be fun. Thank you for being thank you for being on the podcast. I appreciate this very much. So I so first of all, you take your point, and and he's 10 now. And so was it easier when he was younger? No, no. Okay. So I didn't know if there was like a hormonal thing that was coming into play has his has his eating style changed greatly over the years? No. So Jenny, you've been fighting this fight for a long time. So the so the reason it hit you, I'm gonna guess keeping in mind that I have have no psychological training whatsoever. I'm gonna guess that you were doing the things you thought you should do. You're bumping and nudging too far causing yourself a problem on the other side that you have to fix that causes a problem on the other side that you have to fix. And then you just I think then your mom died. And then you just didn't have it in you anymore to hold it all inside is kind of how it feels. Yeah, yeah. Yeah. Well, that's, that's worth talking about. For sure. So so let's start with this. So he's, he's looping. Do you have Nightscout? Can you see what is lupus doing? Yes. Yeah. Right. So in the in the course of a day, are you seeing basil being taken away? Or are you using auto Bolus or not auto Bolus?

Jenny 17:36
We don't use auto Bolus? No. Okay.

Scott Benner 17:38
So is it taking basil away? Is it adding basil all the time?

Jenny 17:44
That that's a good question. I feel like it's just doing both, you know, it's just it's just doing both. It's like, oh, wow, he hasn't had Basal for many hours. And then all of a sudden, I'm like, seeing like, oh, it's adding a lot of Basal. So like, okay, itself,

Scott Benner 17:58
I didn't need to talk about it. I'm sorry. It in a perfect situation, it should not be taking your basil away constantly. So is it taking it away after meals? Or is it taking it away, even away from food?

Jenny 18:11
It is taking it away? It seems like it takes it away after meals.

Scott Benner 18:15
Okay. Well, that that it kind of does that that's sort of how it works. So like you put an insulin for the meal. And it it decides that this insulin that's been Bolus is enough for the food and your management for a number of you know, whatever the time is. And so it takes the basil away and it manages off of the Bolus. Adding more if you start drifting off taking away for longer if it looks like you're going to be low later. So that's fine. If at the end, you're stable, and the basil is back on. But that's not happening. What's happening after meals is he starts going up, and then you put in more insulin. And then no matter how much basil it takes away, it can't stop a little later. Does that sound right?

Jenny 18:58
Right, right. Right. Okay.

Scott Benner 19:00
All right. So I know he's gonna have to think this much, Jenny. That's fine. We're gonna, we're gonna mix we're gonna make some motions with thinking today. Nice. All right. So all right, when's the last time you open the loop up and just ran it like a regular insulin pump to see how close your Basal and your carb ratios and correction factors were?

Jenny 19:21
You know, it's been about a year like we opened it up for a month. And and that was helpful. And then but now I think we just rely on it so much, you know that I'm like,

Scott Benner 19:33
you don't want to stop. Has Yeah. Has he gained or lost weight or become more or less active?

Jenny 19:39
Yeah, I mean, he's going through growth spurt. He's eating more. He's requiring more insulin. And so yeah, I mean, there's definitely some changes going on.

Scott Benner 19:49
The episode there's a pro tip called bump and nudge to it was, it was made exactly for people like you. Okay, have you heard

Jenny 19:58
this like, well, I listened To the bumping nudge one and I'm wondering if I listened to the part two, I feel like I did.

Scott Benner 20:04
The Part Two tells you if you're doing this too much, you're done something wrong. So yeah, that's

Jenny 20:10
what I think. Yeah. And do you have time to like, look at his graphs with me?

Scott Benner 20:19
You want to do it right now?

Jenny 20:20
I don't know. We could do it like after or

Scott Benner 20:22
Oh, no, I mean, it's up to you. But like, I mean, I think for the, for the context of the conversation, if you want to do it now. It's fine. Yeah, I can give it I can give you a number to text it to if you like.

Jenny 20:33
Yeah. So I just go into clarity and then share the code, right?

Scott Benner 20:38
Oh, you want me to look at him live? No, I mean, just I'm not I'm not a doctor. I can't use this code to look at his clarity.

Jenny 20:46
Oh, gotcha. How would you see his stuff?

Scott Benner 20:50
I mean, you could do screenshots and send them to me. Oh,

Jenny 20:55
yeah. Like I kind of wanted you to look at like his past like, week and stuff and see like, oh, what trends are you seeing? But But yeah, if you can't do that, then don't worry about

Scott Benner 21:04
No, I think the trends are. What's interesting, like your, um, your I don't know what the word is. I'm gonna say personality. But I don't mean personality. There's a better word, therefore. You're clashing with this, right? Yeah. Yeah. Chinese like, Yes, I am jackass. That's exactly what I'm saying. So there's something about how you think and what the task is?

Jenny 21:31
Ah, yes. Oh, my gosh, and my husband is so well suited for this. Like, he's got like this data mind. And He only takes care of chi. Like maybe like, I mean, he does it a lot. He he's up with him. Like, every morning, he takes him on the weekends. I mean, both of my kids, and he's just, he's better at it than me. And he does it less than me. That's what's frustrating, because my mind is not my mind is not geared for this.

Scott Benner 21:55
No, I think you're just you're touching it too much. I don't know if that makes sense or not. But but so it sounds like because a 140 after meals, it's nothing to panic about. So let's talk for a minute about what happens to you internally, when you see his blood sugar go higher. You think you're you think you're killing him?

Jenny 22:14
I don't I think so. We've been listening to you. And we are like, okay, he maybe he shouldn't be going this high. And so like, so my husband is more afraid of highs, he doesn't want to see highs. As much as I don't want to see lows. And so we we kind of clashed in that way sometimes. But I'm, I'm feeling like, he's saying, hey, we need to get that number down. And so I'm feeling like, Okay, we need to get this number down.

Scott Benner 22:55
He's saying that it like 140?

Jenny 22:58
Well, I mean, we've recently talked about it. And he's like, you know, Scott was saying, like, things can like, you know, after a meal 140 is not that big of a deal. And so that's kind of a switch for me, because I thought like, if I'm seeing like an arrow up at 125, like I've missed, and I'm giving a quarter, and that's kind of where we were at. And I think we're, you know, we realize, you know, even hearing you say that now it's like, oh, you know, so there's,

Scott Benner 23:27
there's a lot about the line that's important in this. So the numbers are guidelines, but it's more about the line like 125 Straight up, that's somehow going to turn into 140 and then stabilize might just be an indication that you didn't Pre-Bolus long enough. Right? Right. And so and so if it's going to jump up and then stabilize at a at a lower number 140, like a lower high number, then that's probably too soon to correct because it very possibly because your your Pre-Bolus time might be off a little bit, you're gonna get a big push from the insulin very soon. And now you've laid some on top of it again, that is causing a low later. So your your the timing is the problem for you. Maybe because

Jenny 24:11
I think so. And that's one thing I don't understand, because like, let's say he's 112. And I'll look at that. And I'll be like, okay, about 11 minute waiting time, you know, depending on what his numbers doing, if he's coming down fast, it'll be less if he's going up a bit. It'll be a little bit more. And so I feel like I have a good grasp on that. But then like when I actually execute it, I'm like, Man, I messed that up somehow. How did I mess that up?

Scott Benner 24:37
I wonder if I wonder if the auto Bolus branch of looping wouldn't be valuable for you. Because then when he was going up, the algorithm would would try to stop it. And it would take the pressure away from you about thinking about putting more insulin in because maybe you're just bolusing too much when you're doing that. I mean, you are Maybe or if it's causing a low later.

Jenny 25:02
Yeah, yeah. Because we are dealing with a lot of lows. So what Yeah, I feel like yeah, maybe we're just just intervening too much. You're

Scott Benner 25:11
jumping the gun? That's what it sounds like to me. Yeah, yeah. Because I

Jenny 25:15
do have a history of kind of under bolusing for meals, like, I'd rather see him go a little bit higher than go low. And, you know,

Scott Benner 25:25
oh, Jenny, you're a paradox. This is wonderful.

Jenny 25:29
And then my husband will be like, you know, he's like, it's better to, you know, give a few carbs. You know, and I mean, I've heard you say that, too. But the thing is, it's like, he just like drops out like he just like the number will just go lower than I want him to. And I hear you talk about Arden. And she's not having a lot of lows. Like she's like barely going under 70. Is that right? Yeah, we

Scott Benner 25:55
don't see a lot of lows, that's for sure. Oh, my goodness. And

Jenny 25:59
then like that, you're talking about being bold with insulin, and you're, you know, you, you are bold? And so I'm like, How is he doing this?

Scott Benner 26:07
Okay, well, how I do it? And how you do it might likely be two different things. But I mean, as we're picking through this, is it possible that you're under bolusing the meal, causing the spike by not bolstering it properly, and then putting in more insulin? It's causing a low later, so so if you just put so yeah, great. So just put the insulin where it belongs in the initial Bolus?

Jenny 26:31
Yeah, but I, but I don't know what the right amount is, you know what I mean? Like I,

Scott Benner 26:36
it's likely some amount of the correction that you're using. Because it because of that quarter was in. Alright, let me try to think of a way to say this without having visually looking at you. So if let's use more specific numbers, like how much insulin in an average meal Bolus for him?

Jenny 26:58
Oh, let's say for four units, okay. And then later, you put it

Scott Benner 27:01
in a quarter? Yes, you do a quarter, then another quarter and other quarters, it usually just one time.

Jenny 27:08
I mean, it depends, like, if he's going up to like, 130 or so a quarter, if he goes up to 150, and other quarter if he goes up to 170, another quarter. So I have kind of like these benchmarks that all follow up, usually it's a quarter or a half more.

Scott Benner 27:26
Okay. So then, in my opinion, like, I mean, based on this, and keeping in mind, Jenny, that nothing you hear on the Juicebox Podcast should be considered advice, that if you just put the four and a quarter, four and a half in initially, then that would maybe stop the spike, which would stop you from putting in insulin down the road from the meal, which is then going to count which is going to then make him low later. I don't think you're far off from this, by the way, I just

Jenny 27:52
need to I feel like I'm in the ballpark. And I just want I want the ballpark to be smaller, like I

Scott Benner 28:00
Okay, so. So I listen, it could be a million things, right? Maybe the fours enough. And you're not Pre-Bolus thing long enough? How are your Pre-Bolus? Is

Jenny 28:10
there? I mean, they're dependent on his number, you know, I would say about 10 minutes, like,

Scott Benner 28:16
you know, it depends on this number. How like, so if he's one, like, I don't know, if he's 130, you'll Pre-Bolus for 10 minutes, but if he's 90, you will Pre-Bolus a shorter amount of time.

Jenny 28:27
Yeah, yeah. Like I had heard the rule of like, okay, if he's 130, you take the first two numbers. 13 minutes is a good ballpark. So you know, depending on what his numbers doing, if it's going down too fast, I'll do less if he's going up a bit. I'll do more. You know, if he's 90, I would do nine, right, nine ish minutes. You know,

Scott Benner 28:43
so So taking away taking away the internet's theory about Pre-Bolus. When when he's 130, if you Pre-Bolus Then 30 minutes later, before he eats, what's his blood sugar?

Jenny 28:58
Well, I will watch that too. Because I'd like you know, 13 minutes in if he's 150. I'm gonna add some time. If he's, you know, going down, then I'll start him right away.

Scott Benner 29:10
Okay, going down like he's 120 Diagonal down. Go ahead and eat. I mean, yeah, yeah, yeah. Okay. Yeah. Yeah, I think which insulin are using? NovaLogic vlog, gotcha. Novolog so not fiasco or loom? Jeff so if you're, so you're putting in insulin. And do you ever use the pre meal button on the loop instead of Pre-Bolus thing or to help Pre-Bolus

Jenny 29:39
Oh, no, I mean, I know it's there. And that will so the pre meal button. You push it when an hour before or half hour before and it'll kind of

Scott Benner 29:48
change the shape. This one is Yeah, right. So it I think pre meal target 72 I think that's okay. I want to say that's the lowest target that loop lets you have but I mean, maybe that's Something you can change in the programming, but I'm pretty sure it targets the 72. So are you

Jenny 30:05
guys still looping? Or are you have you moved to Omnipod? Fight?

Scott Benner 30:09
No Arden has used on the pod five for a number of months, and then we've gone back to looping. Really? Yeah. So okay, she did not enjoy carrying the controller and wanted to everything on her phone. Gotcha. I was concerned on the part five worked exactly the way I expected it, though it did. It did exactly what I thought. And it took me a little while to learn. It took me a little while to learn how to set it up and how to get it going. Right. But once it did, it did exactly, I don't see a ton of difference in any of the algorithms. I guess I probably shouldn't say that. But they all go about it slightly different way. But, you know, I think with every, every algorithm I've seen so far, there are times when you need to help it and there are times when you need to leave it alone. And those things. Yeah, you know, they take time to learn, which is which?

Jenny 31:02
Yeah, and so with loop, do you? Do you just follow the recommendations? Or does she, you know, like, Hey, I'm gonna eat this many carbs. It's saying, I should give this much insulin? Do you guys just like follow the recommendations? Or are you like, playing with it a little bit? Like, I think she needs more than that. Or less than that?

Scott Benner 31:26
No, generally speaking, we follow the recommendation based on our settings.

Jenny 31:30
Right, exactly. Your settings have to be right. I feel like our settings might be off a little bit. And like, we're always tinkering with it. Like, I'll put in some carbs. And I'm like, I don't think that's right. I'm like, I'm going to do more. And so you know, then that probably screws things up on the back end. And so,

Scott Benner 31:47
you know, I mean, if the settings aren't because, because it causes you to think too much like if your settings or your insulin to carb ratio is way off, then you're going to be constantly. I don't know, like second guessing it like it sounds like you're doing before you even get to see if it works or not. So I mean, your settings have to be right. Also turning like opening the loop for a month is I don't think that was I don't think you need to do that. But I think you need to find out a is the Basal rate I have holding him stable without making him well. That's an important thing to understand.

Jenny 32:21
And I should start with that at night.

Scott Benner 32:23
Yeah, yeah, try it overnight. Because it's simpler. He's not probably in puberty yet, right. So you don't probably don't have a ton of like, growth going on and things like that. So maybe you can get a couple of good nights where you can check that. And then you say, Okay, well, my Basal looks right, good. Next step. How am I you know, how am I setup for my insulin to carb ratio here. That's where you could even you know, you could let a blood sugar raise up to, I don't know, 150 and put in, after it stabilizes. Put in like a half a unit or a unit, whatever you think is reasonable to see how far it moves them to give yourself a pretty good idea of what the insulin sensitivity is, right? Like one unit moves me this far. Oh, nice. Yeah, right. And then okay, now you have that now your insulin sensitive is a little closer. And then you look at carb ratio, and you start with things that don't have extra impacts, like you wouldn't try it with french fries, for example, because it has fat in it, but a meal that you feel pretty comfortable understanding, right? As far as the carb count goes, and you and your understanding of what the coverage needs to be for the insulin. So say you, you find that meal, you look at it, you decide, look, I don't know how many carbs are in this, but I know for certain that for units covers this meal really well, it's not going to cause a spike. If I use a certain you know, Pre-Bolus and it's not going to make a low later. So okay, so it's for four units for it, then you go back and count the carbs. And you say I'm making up numbers, right? It's got 40 carbs in it, okay, well, then his insulin to carb ratio is one for 10 because four units covered this 40 carbs or whatever the math ends up being it's four units for 50 carbs, just do the math that way. And then okay, now I'm pretty close on my insulin to carb ratio. Great. Now I have my Basal that my insulin sensitivity my insulin to carb ratio. Now we go back into the loop and try it out and see what happens. And if you see if you see a lot of a lot of unbalanced with the Basal being off all the time, then. Okay, that might tell you, the basil is too strong. If the basil is constantly overworking, it's adding it's adding it's adding maybe you had your basil too weak. You Bolus your Bolus are reasonable Pre-Bolus. You see a spike. It's fine goes 131 40 comes back and goes level. You're pretty much there. You might need you might need a little more maybe Pre-Bolus time in that scenario. But then I think that's just how you work through it. It shouldn't take that long to go through those steps like you should didn't need a month for those steps. Okay, a few days a week. I think that's pretty much it really, like you should be able to get a pretty solid idea after that. But you have to let it run to see. Like, you gotta gotta let it work. You don't I mean,

Jenny 35:14
yeah, yeah, exactly.

Scott Benner 35:17
An example that we just had, like, we just had to had to make some adjustments to Arden's recently, because we got her to college, and her insulin needs changed drastically, like significantly less. Oh, wow. And then we made all the switches to that. And we're like, okay, got it. Perfect. Good. And then four days later, it started going the other direction. Again, I couldn't tell you why it doesn't even seem to matter. And so we started to bring them back slowly, like just kind of crank them in the other direction of being stronger again. And finally, after a week or so, because Arden's not with me, if she was with me, I would have done it much more quickly. But after a week of so because I was doing it remotely, I was like, Screw this, this isn't working, put all your old settings back in. And we put all the old settings back in from before she left for college before she had the experience where she was super low. And everything's working well again. Oh, wow. So a big swing, by the way. For her. It was a big swing in some of those numbers.

Jenny 36:24
Wow. Yeah. Yeah, that's what's uh, yeah, that's what it's hard for me is the variability because I'm like, Yeah, we could figure all this out. And then it could change. And I mean, that's just the game, you know. And I feel like I need to come to some understanding that like, hey, this has diabetes, and it's okay. I was talking to his doctor about my anxiety. And she's like, you know, a working pancreas is making adjustments every minute. You know, she's like, we're trying to be a pancreas. And we can't, and, you know, give yourself some slack.

Scott Benner 36:56
I agree. Yeah, I know.

Jenny 36:57
It's like, I feel like I could get to the point. Like, in my mind, I'm thinking, hey, if I could just get to the point, you know, he's just gonna be cruising between 80 and 120. It's like, if I just do the right things. And I'm like, I don't think that's realistic. You know, like, there's going to be ups and downs every day. Sure. Right. I mean, I don't know, though. But it's, I don't know, though. It seems like Arden's like cruising between 80 and 120. Most of the time, is that right? Or,

Scott Benner 37:23
I mean, art in So art is a girl, and she's got hormones, and she's a lady. So it's not apples to apples, I would tell you that our biggest struggles with Arden are meals that probably have more fat in them. That cause hires late highs later. So fighting through them, when I'm not with her, even over these just first three weeks, have taken more time. When I'm with her, we were close. We were more like he just crushed this right here. But she's on her own. She's still figuring out how to handle that, like, you know, and I also think she's still getting into college. So I think what's happening is she's having these meals later at night, and she's accustomed to eating. Yeah, she's staying up late or doing homework. And her blood sugar is persisting at a higher number. And she's not being as aggressive with it, as she needs to be. And so it's lasting longer, I'd say those are her bigger struggles. Right now at college. It wouldn't have been the same five weeks ago when she was at home. Like her bigger struggles back then were more around. I mean, if a beat Pre-Bolus in remembering to Pre-Bolus was her biggest struggle now. But something about the something about her the pattern she's living in right now she's doing a good job of Pre-Bolus. And she's also using the premium button, which was something I could never get her to do before at home. But now she's seen she's seen the value in that, that she's in school. Nice. So I think it's constantly. I mean, your son's at a at an age where not a lot is going to change about his life over the next couple of years. But for Arden, it's constantly morphing, like, where are the struggles that? Yeah, you don't I mean, but but the settings have to be right. I'm going to tell you right now, if the settings are wrong, the algorithm is useless. And then you're just fighting something that's not knowable. And from listening to you talk now for half an hour. You want this all to make sense and do what it's supposed to do. And if your settings are wrong, that doesn't exist. And now you're trying to figure out something that you don't have. You don't have the right input for so how do you know what's happening next, because you're expecting it to do one thing, but that expectation is built on the settings being correct. Right?

Jenny 39:55
It makes right yeah, yeah. Yeah. And I did want to Talk a little bit more about the fat and protein rises. That's something that's kind of newer to us. Like in the last year, we've been listening to some of your episodes about it. And like we're, you know, saying like, wow, this is a reality. And that is hard for me. Because so I keep like a pretty detailed log about, like, what works for what meal, you know, we have about 10 meals that we mostly do. What usually works, oh, man, there's so much variability, sometimes three units work, sometimes five units work, but after the fact, like the fat and protein rise, like I do not know what to do sometimes, like, I'll, I'll we'll do like this chicken tender and smoothie meal, and I've done it so many times. And it's amazing that I can still mess it up like I, I still mess it up. And so, you know, after the fact, it's, you know, what does this fat and protein rise require? Well, it's sometimes a half unit, sometimes it's two units. And for me to give a unit blindly, like two hours later, it's like, I know this is coming, just give a unit. And I'm like, oh, man, it's so hard for me. And so I start to chase it. I'm like, okay, he's going up, let's give a quarter, it's going up again, let's give a quarter. And was a fat in protein, right? It's like my normal way of bolusing. Like, for correcting that doesn't work. Like he'll be up to 200 in no time. And then, you know, takes hours. So fat and protein rises are hard. You know, I haven't found a great way to deal with them.

Scott Benner 41:32
Well, it's funny, you, you present your problem and answer your problem while you're talking, and then at the end, you say, I don't know what to do. You just, you just told me what to do. But you're not gonna do. You can't, you can't chase the blood sugar, and you have to trust that what you know is going to happen is gonna happen.

Jenny 41:53
Yeah, exactly. And so in the times that I have done it, like it's worked, you know, and I'm like, Jack that work. But then, but get this there are times I've done it, and it's hit me in the ass. And it's like, it didn't work for us.

Scott Benner 42:06
But isn't it easier to stop the low or the fall when it isn't needed than it is to fight with a high?

Jenny 42:13
Oh, it is. But the thing that I hate is like waking him up in the night. Like for juice. I'm like, you know, it's like I can like give insulin all night long. And it's like not waking him up. But I mean, it's harder on me. And you know, and then he's high. And that's not good, either. But, but yeah, you know, the low. The lows are easier than the highest because a sticky high, so hard, and then you're giving insulin at night, which is an ideal, you know, like, too much insulin at night. I'm like, oh,

Scott Benner 42:46
Jennifer, can we talk like friends from it? Yes. Okay. Do you have issues with perfection? In other parts of your life?

Jenny 42:54
No, I'm, like, so relaxed. I'm. So my husband is the perfectionist, and I am the relaxed one. Okay. And it's like, we're having this like switch of things.

Scott Benner 43:05
Is it a switch of things? Or are you and I don't mean to dig into your relationship too far? Or are you trying to accomplish something the way you think he would do it? So that he's happy about it? Yes. I am very good at this journey. Okay. So so, you can't do that. Because you're fighting your own. You're fighting your own nature. You're fighting what you think is right, by trying to apply what you believe he would do. Except your brain doesn't think through things the way his does. So you keep messing it up. Yeah, just do Yeah. Just do me. Yeah, the world is just t shirts, slogans. I don't know how to break this, everybody. Just just follow like your 20 favorite t shirt, slogans and you'll be okay. Like, seriously, you have to trust your own gut. You can't wonder what his guts saying. Because all the decisions that you've made up until this moment, are based on how you would handle this. And then you get to a number that you think your husband is going to be dissatisfied with. And then you suddenly try to shift to what he would do. But you don't actually know what he would do. And it wouldn't matter anyway. Because the first 10 steps were yours. Yeah, ah, J. Okay. Yeah. All right. So, because when if you're not a perfectionist in the rest of life, then like, but you are really you want this to be perfect. You want you want this diabetes thing to be absolutely perfect. I think the best thing you might do for yourself as the is to come to grips with the idea that you're not going to get everything you want here. Like you might get, you might get a lot of it. But yeah, you have to get there's got to be give and take somewhere like you either don't want a 140 blood sugar after a meal or it's okay. And because what happens next like I look at the 140 stays 140 for a little while before When he comes back down, I have to think that's okay. Because if I don't, I'm correcting too late. I'm chasing the blood sugar, forcing it to be low. And then I'm on this roller coaster that's making me crazy. So yeah, you want, you want everything to work. But I'm trying to think this through, you want everything to work. But you're creating problems every 90 minutes for yourself.

Jenny 45:25
Yeah, like keeping him stable for like, a period of time is hard. Like, it's not happening, you know, drunk

Scott Benner 45:32
swerving on the road, you're just going back and forth, and back and forth. It just be comfortable riding on the line on the right. And just be like, Okay, I'm not in the lane, but at least, at least, curving. Because I think you would learn a lot about the management by Oh, I almost cursed. I was gonna say by just leaving it alone for a little while, like letting it be like, yeah, yeah, you're bumping in lodging too much? Yes.

Jenny 46:02
So I think that's a good idea. Maybe just like, let things chill for a little bit get kind of a feel like for what it is going to do? And,

Scott Benner 46:11
yes, that's brilliant. 100%. Yeah, yeah. Because? Because earlier, good. Ed, if

Jenny 46:19
he's getting like a little bit high, while I'm figuring this out, it's okay. You know, right, let's just see this,

Scott Benner 46:25
Oh, please. I sent Arden off to college and a place where she's sleeping by herself. I looked at 170 overnight blood sugars for a week, like making sure we were doing the right thing, because I was like, I can't just get this in the wrong direction and create a low while she's by herself. So let me bring it down more slowly. I wasn't thrilled about it. It's not gonna, it's not gonna ruin her life. Yeah, you said something earlier that I want you to know, would be a huge waste of time, you were like, I want you to go look at all of our records, and try to find trends. But think about that. If you're doing four or five things that you shouldn't be doing, why am I looking for trends in it?

Jenny 47:05
Yeah, that's what I think about looking at the data. I'm like, I don't know what the hell I'm doing. You know.

Scott Benner 47:12
Also, it's because like, you're playing tennis, right? But you show up with a baseball bat, and you're wearing cleats on the court. And then you want me to look at the video and find out why your tennis is bad, your tennis is bad, because you're using a bat and wearing cleats stop doing that. You know what I mean? Like, like, so the I think that's why in my opinion, with this stuff, it's always about going back to the beginning and just sort of starting over again. But you're not, you're not really starting over because you have a lot of guidelines, and you know where you're close. So I don't know, for me, it's get your Basal, right, make sure your insulin sensitivity is good. Make sure make sure your carb ratio is pretty accurate Pre-Bolus that amount of time that you know, gets you as low as possible before the meal without creating a low that needs intervention. And then just letting the then letting the Bolus work and see what happens if you eat something with a bunch of fat or protein in it. You got to do some experimenting, see where it hits? You know, is it 90 minutes after we start eating the YC? The rise from the French fries? And if so, I got a Pre-Bolus that rise a little bit. And if it doesn't happen one time, then I catch it with some fast acting on the other side. But I'd rather be you know, I'd rather stop a lower falling blood sugar than fight with the high one. This podcast is all set up for you. But you're listening to the wrong parts of it. Does that make sense? Yeah, okay. Yeah. This is very interesting. Are you having a good time? Or is this not going the way you hoped? No, no, we're

Jenny 48:41
having a great time. It's great to talk to you like we've been listening to you so much. And I'm like, Wow, I'm talking to Scott. So this is cool. So thank you, please. It's

Scott Benner 48:50
my pleasure. And it's weird that you feel like that. So I can be completely there's probably people listening right now that are like, he didn't know what he's talking about. And, and I might not, but all I know is that settings are very, very important, then yeah, then timing is very important. And then understanding the impacts of different foods is the rest of it. Yeah, yeah.

Jenny 49:15
Then that's where I have a hard time too, because I really do rely on carb ratios a lot. And sometimes they work and sometimes they don't. And so yeah, I've been trying to be more aware of that, like, yeah, how does this food hit him? How does this food hit him? So and

Scott Benner 49:33
I'm sorry, good. Yeah.

Jenny 49:34
Go ahead. Go ahead. No,

Scott Benner 49:35
no, I My question was about you said when your husband's managing him, it goes better. Yeah, but it's the same algorithm and the same settings and the same kid. So what's he doing differently than you're doing? Is he just putting in the right amount of insulin for the meal and not undervaluing the meal? Yeah, Jenny, you don't even have any questions for me? You just wanted to come on and tell me what's going wrong so I can tell you what to do. Oh, yes, I

Jenny 50:01
did. This was an excuse to talk to you.

Scott Benner 50:08
So, so the anxiety hit you earlier when you wrote to me, but I can't get people on fast enough. So it's kind of gone away. So tell me what you did. That's helped lessen it.

Jenny 50:20
So, yeah, I was in a crisis mode, and I just started reaching out. I was like, Okay, I reached out to you. I'm like, I want to talk to the Kung Fu diabetes master and like, you know, get some input from him. I reached out to some moms, I've met a mom recently who she's got, like a nine year old, who was diagnosed when he was two, they're looping, they listened to juicebox. And I'm like, Oh, my gosh, so I want to spend some more time with this family. I, you know, I just want to, I just wanted to spend some time with people who understood, you know, because it's like, I want the world to understand what we do. And they don't you know, what I mean, that's unrealistic for me to want that. But yeah, I reached out to a therapist, I, I actually got on some medication, because it was just not, I just was not doing well. Talk to his doctor, listen to a book about anxiety. And I mean, it's like, I wasn't doing well, personally. And I knew I needed to be. And so I was like, I need to take care of myself. And I need to put some less pressure on myself about this. Because, you know, it's like, he's better. You know, even though I feel like I'm not doing a great job. It's like, it's better that I'm doing it than not doing it. You know what I mean? It's like, I want him to be a happy and healthy kid. And like, you know, a Bolus for lunch. And, you know, I'm just so happy to see him like, eating what he wants, you know, and, and it's like, Hey, I might screw this up. But at least I'm here. You know, do it.

Scott Benner 51:58
Yeah. I it just occurred to me while you were talking, that you're not overreacting, because you don't know what to do. You're overreacting because of the anxiety. Like, like, yeah, yeah. Oh, I see. Okay. I'm sorry. It took me that long to think that way. Oh, are alright, so your husband doesn't feel anxious about it? So he's Yeah. You're like, yeah. And like, like, spread this anxiety around a little bit, given everybody a little bit. So you're, you almost you do know the right thing to do? You can't stop yourself? Because so is the is the answer not to look? What's the what do you mean? Could you just like Bolus for a meal and throw your phone across the room? Well, I

Jenny 52:53
guess I've been experimenting with that. Because I'm like, I don't need to be staring at this number. And so like, I will set like, the alerts at like, 80 and 120. Yeah. And be like, you know, let's just just chill out and like, see what's going to happen. And that's helpful. That's helpful. Actually, you know what I mean? I think some of that work.

Scott Benner 53:12
Yeah. Yeah. No, 1,000,000% Oh, yeah, this is, this is not as much about this isn't as much about this, about the diabetes as it is about you. You're reacting to it too soon. But you can't stop yourself from reacting through since the medication helped? Did it kind of cut the anxiety down a little bit?

Jenny 53:34
Yeah. Like, I feel kind of like I did beforehand. And so I'm hoping it's like a short term fix, like, you know, be on it for a year get myself in a better way and then get off perhaps, you know, um, but yeah, it has helped

Scott Benner 53:47
to the I can't help but to go back to your mom's passing. And say that maybe that this is like subconsciously like you trying to make sure nobody else is sick or dies.

Jenny 54:00
Wow. Maybe like she was a super anxious person. And I'm like, did some of her anxiety like, come to me after she died?

Scott Benner 54:09
was holding it off for you and gave it to you?

Jenny 54:13
Cool. I bet. Yeah. But then, like, some existential stuff came up. It's like, oh, I don't have parents anymore. And like, Oh, I've, I feel like I'm an orphan of the university. Like, you know what I mean, I mean, it was like, a big stuff happens when your parents die,

Scott Benner 54:26
you know, now you're really an adult. Now, I'm

Jenny 54:29
really an adult. And it's like, you know, and I'm taking care of this, this kiddo that needs a lot of, you know, needs a lot of support. And, gosh, I'm just, you know, with this anxiety, it's like, I felt me wanting to make my world smaller with him. I'm like, Oh, you want to go out to McDonald's and like, sometimes it's like, I just don't have the mental bandwidth to do that. I'd like, you know, I'm like, you know, some days I'm feeling better. Some days. I'm not and it's like, you know, I've been wanting, you know, I've been wanting to take them out for an ice cream And I'm like, I need to be mentally ready for this. And we need to be having a good diabetes Day. You know? No, and

Scott Benner 55:07
I didn't think about all those different kinds of extraneous variables that are coming at you because of that. So, okay, so obviously, you can't just give anxiety away, and you can't, you know, calm this can't be given from person to person, like your husband can't just say, leave it alone. But would it be helpful if the two of you did it together? And you just defer to him? To teach yourself that if you didn't react, it would be okay. So the only thing I can think of, yeah, like,

Jenny 55:39
I love the days that we do do it together, because it's like, there really isn't like a back and forth and a give and take and like, I think and this is going to work, I'm thinking this is gonna work. And yeah, like, I feel like better and like, smarter, like when I'm with him, you can

Scott Benner 55:54
trust him like it. Trust the wrong word, but you can take his lead and not let the anxiety overwhelm what he's saying.

Jenny 56:01
Absolutely, yeah. Well, sometimes. It's funny, because he's a little he's, he's more bold than I am. And so like, sometimes he'll be like, let's give insulin on this. And I'm all right. Now, you know, like my buddy's, like, I like I hate Lowe's for some reason, like, I just don't like Lowe's, because he goes low, so often. And sometimes it takes five grounds. And like, I mean, we've dealt with Lowe's, where it's like, 2025 grams, and I'm like, I don't like that. That's more than a juicebox. You know, so. So I I'm like, I'm definitely more comfortable at a high, like, if he's hanging out at 120. I'm like,

Scott Benner 56:41
Jake, I have to tell you calling 120 Hi, I think is part of your problem. Okay, well, thank

Jenny 56:49
you. Yeah, thank

Scott Benner 56:50
you. Yeah, I think I think considering 120 High is definitely part of your problem. Like, well,

Jenny 56:55
would you let like art and just like hang out for six hours at 120? Like,

Scott Benner 57:00
no, it's not high. Right? I wouldn't do that. But I wouldn't cause a low either. Like, I know, I know how to, like, bring it down a little bit without making a problem.

Jenny 57:11
Right? And yeah, they've got looped working with me too. You know, it's like, so it's like, I gotta think of that. So it's like, if I'm giving a quarter, it's like loops already given

Scott Benner 57:20
elutes doing its thing. That is part of the reason why I wondered out loud if the auto Bolus wouldn't be better for you because it would be more immediate.

Jenny 57:29
And so I'm not totally familiar what the auto Bolus branch is or does, then. So I mean, I think my husband does. And we can go into that. But yeah,

Scott Benner 57:39
basically, instead of trying to push the 120 with basil increases, it'll, it'll push it with boluses. So it'll do, I think it comes preset at 60%. Meaning that if it looks at a number, and says, I think you need a unit to move you back to target, it will give 60% of that number.

Jenny 58:00
Oh, interesting. And that makes me nervous. Because I'm like, wow, we're experiencing so many lows right now with that, just like, Yeah, I think aggravate it.

Scott Benner 58:10
I think you're making the lows that Jenny. Yeah, yeah. So so so again, then it would take another reading. And then it would look at its predictive model and say, Okay, well, if I think it needs more, like, say, gave you point six of the one unit expected, right, so now there's point four, it hasn't given yet. If it decides you need more than next reading, it'll only give you 60% of the point for Oh, okay. And then so we've kind of titrate that that way. Because maybe what's happening is you're staring at the 120. And it's pushing basil, which is going to take an hour or two for it to move you back to where you want to be. And so now it's given him enough basil to make to make him stable later, and then you come in and make another unnecessary Bolus. And then it probably then takes away basil trying to stop the following case. Right.

Jenny 59:02
Right. Yeah, that's just a cluster.

Scott Benner 59:07
So I'm terribly sorry, Jake, because anxiety is not something I understand, personally, you know, like from a personal experience, but I have spoken to enough people that I do get how it impacts people. And you had none of this prior, or you had some of it, but it's worse.

Jenny 59:25
I had some of it, but it's like it, man. It just came on, like 1010 times worse. Like, I'm like, I have not experienced this. Like I would rate my anxiety every day. I'm like, how am I feeling today? I'm like, Man, my anxiety is an eight today and that was happening a lot. You know, now my anxiety is like, you know, I don't know 234 I do get nervous around Bolus time still, like, you know, it's like, I'm gonna be Bolus thing for lunch soon. And it's just like, ah, it just makes me nervous. And you know, it's like, I just don't want to just I just don't want to miss the mark. I just want to like, have it like just be the right amount. And it's

Scott Benner 1:00:05
because if you don't, then that's another anxiety inducing moment.

Jenny 1:00:10
Totally, totally. And part of it feels like Man, I've been doing this for seven years. It's like, shouldn't I be better at this? Which makes

Scott Benner 1:00:17
you feel anxious that you're never gonna figure it out? Yeah. Oh my god. Yeah, you're caught? No, it's a death spiral.

Jenny 1:00:23
Yeah, so I think like, if I can just like, keep listening to the podcast, and it does help me to hear like the stories and hear people talk about it. I don't feel so alone. And like, I love like, the really specific things like, Hey, here's how you Bolus for fat and protein. And yeah, you know, here's some really practical tips. It's like, so helpful and talking to other moms. And, you know, and just like relaxing a little around it, because it's like, yeah, he's got a disease, and it's diabetes, and there's going to be ups and downs. And it's like, his blood sugar is not going to be chillin at 90, like all the time. And that is okay.

Scott Benner 1:01:00
I think I think that's what I wanted to say to you earlier than I never ended up saying, which is you? It sucks, but it does have diabetes. So your your goal for your goal changes significantly plus before diabetes, you were never aware of what his blood sugar was. Yeah, you had no idea. And you never thought about it. So it wasn't something to be concerned with. You never thought about what he ate or didn't eat, or how long it was before, etc. Like, none of this existed in your life. And now suddenly, it's all here. And you kept your expectations where they were, but the game changed a little bit.

Jenny 1:01:38
Yeah, totally. And I think like when he was diagnosed, I thought, because they were like, he can have he can eat anything he wants. You just have to dose for it. They did. They did say stay away from sugar, or I'm sorry, stay away from syrup, and pop. And I'm like, well, that's make sense. But it's like he can have anything he wants. And he can do anything he wants. And I was like, yeah. And then like as time goes on, and as I'm learning more, I'm like, I mean, he can eat what he wants. But it's like there's repercussions. You know what I mean? It's like, we can't have pizza at 10 o'clock at night. I mean, we could, you know, but do I want to deal with that? We can do anything, but it's like, how much mental effort is it going to take to manage diabetes when we're doing it? Yeah.

Scott Benner 1:02:27
Because its impact on you is different than its impact on me and other people. So when you think about pizza at 10 o'clock, as an example, is it you get anxious right away, you start to cry? Like, like just talking about it? Like, are you are you upset because you're letting him down? You think that he can't eat pizza? Are you upset thinking about oh, I'm going to be up all night with this, like, what part jumps into your head first?

Jenny 1:02:51
Well, part of it is like so like, I love food. And to me food equals love. You know what I mean? It's like, I want to give you what, what you want. And so I'm sad about that. I'm like, he'll, you know, he'll text me that, hey, we're having a snack at school. And I'm like, I don't know how to Bolus for that right now. So like, I don't say that, but you know what I mean? Hey, save it for, save it for after school or save up for lunch. So there's like this emotional part of it.

Scott Benner 1:03:26
You feel like you're not giving him something that he deserves.

Jenny 1:03:30
Yeah, it's like, yeah, so there's that emotional part. And then part of it is like, oh, man, I'm gonna be dealing with the repercussions of this later. So, yeah, I was, I was brave the other week, and I like he wanted pizza. And I'm like, let's order pizza. We never ordered pizza at night. And I had an idea of what was gonna happen and, like, the meal went well. And then, like, I just wasn't aggressive enough at night. And it hit me in the butt. And I'm like, okay, you know, we can I don't know, sometimes I just want to stay away from that kind of stuff. And sometimes I'm, I want to do it again. So I can learn because the more we do it, the more I learned how to do it. You know?

Scott Benner 1:04:15
No, I understand. I really do. I wish there's this moment here where I wish you could feel like the way someone feels. Who doesn't have anxiety who would still be upset by this, but not driven to the place where you are, like, I have felt the way you felt. I felt like oh my god, please. No one like who just ordered Chinese food. Like, seriously, which one of you mother her said, we should get Chinese food kill you all, you know, like and then but I can let that go. And I you know, as I was younger, I would have just attributed that to like, I'm a guy, but and maybe there's some of that that's true, but I I don't feel anxious the way you do. So like even though I know Oh, God is Chinese. I'm going I have to figure this out. It might not go right, it might cause a problem later, I'm able to blissfully ignore even what's two hours in front of me. Maybe it is because I'm a boy. I'm just like, it'll probably be fine. If it's really that is the biggest difference between men and women, isn't it like guys, it'll likely work out. And if it doesn't, we'll just hit something or kill something, whatever we got to do. And and women are like, I need this to go right. And you have all that mom guilt on top of it, by the way, which Yeah, but

Jenny 1:05:34
like, I'm tired the boot like, even though we're looping, it's like, I'm still up a lot in the night. And like, we're one of those people and I, I'm getting the impression that Dexcom you know, it's awesome. I think it works great on some people. And I think it doesn't work as well on some people. And like, I think he's one of them where it doesn't work great, especially at night, because I'll get a lot of false lows. And like if I get a low alert at night, which is often and I test him, he's not really low. So crashing low. It's a compression low. And it's also, I don't know, Have you have you run into this? Have you seen this where it's like Dexcom just doesn't like work as well, on some people, like, we get a lot of ups and downs, we get a lot of false readings, we get a lot of sensor errors. It's rare that his Dexcom will last the full 10 days. And even when we were on the previous Dexcom. Like it lasted seven days, I think it was rare that it would last seven days. Like it's just

Scott Benner 1:06:33
so I don't know if that's some sort of user error. Or if it's a camera body chemistry thing. Like I don't

Jenny 1:06:39
think it's a body chemistry thing, because I had like a Dex person even come out to the house at one point. And I'm like, Okay, this is how I'm putting it on. What do you think? And he's like, you're doing it right? And I'm like,

Scott Benner 1:06:50
What about hydration? Is he really properly hydrated? Well, that's

Jenny 1:06:54
one, that's one thing that has come up, and I tried to have him drink, you know, as much as I can. And he's probably not as hydrated as he could be. So that's always something I'm thinking about.

Scott Benner 1:07:04
I mean, if you if you could push, like real serious hydrate, like not like don't float his kidneys away or anything like that. But like, you know, keep him really hydrated for a week. And see if that if that helps. Because that really could that really could be it. Because yeah, it's it's reading interstitial fluid, right? It's not reading your blood. If you're dehydrated, that fluids not flowing properly, and you're getting, you know, it's almost like a it's like a compression low in that, you know, you're not getting a proper reading because the glucose isn't being distributed evenly in that flat. So you can't you're not seeing that. I think, if you're putting it on correctly, etc. I think making a real concerted effort around hydration would give you an answer as to whether or not that's your issue or not, may give you something, and it might give you something to focus on to Jenny. Right. That poor kid, I already see his eyes filling up with water, just like keep drinking. But I think you're smart, too. I know we're up on an hour already. But I think you're smart too. I mean, after listening to you completely. I think working on yourself and trying to minimize your anxiety is probably like, step one, a one b in this. Like you can go back and look at his settings. But I might just try, like tying my hands behind my back for a couple of days first. Yeah, just yeah. Just let it let it go. Because it sounds like when your husband does it, it works. So that would indicate to me that the settings are right. I don't think it's that he knows something you don't know. I think it's almost that he's not. He's not touching it as much as you are like, You know how some pots need to be stirred. And some recipes tell you like leave it alone. I think you're I think you're saying I think you're staring the thing that's supposed to be simmering. That's all Yeah. Yeah.

Jenny 1:08:59
Interesting. Yeah. And how many interventions are you doing with art in a day? Like, is it like, you're not? Or you know, when she was with you?

Scott Benner 1:09:08
Like how many times I talked to her? Yeah, hardly ever. So really?

Jenny 1:09:12
Yeah. Well, I've heard you say you think about diabetes 10 minutes a day. And I'm like, That is amazing. Like, there are 10 minutes. I'm not thinking about it, you know, and so it's like, I'm

Scott Benner 1:09:21
not trying to keep her blood sugar at 95 constantly. So

Jenny 1:09:25
you're letting it ride and like you're seeing like ups and downs, but it's you know, I mean, it's in a good way, just letting it ride.

Scott Benner 1:09:32
Here's an example. She goes to class this morning. And she's at the end of a site. It's um, pumps got like 30 units left. And so we're pretty much on the end of like, 72 hours coming up on it. And I don't know what happens she doesn't eat in the morning. I don't see a Bolus on Nightscout anywhere. So she heads out the door goes to school, she's in a room and then she starts experiencing a rise and I let the If I let it Bolus it does the micro Bolus is micro Bolus micro Bolus, and it was having trouble getting ahead of it. And I think she got I can look and tell you, because I think maybe you knowing this would be really helpful for you. So here, we turn it sideways, so I can look at a little better. So she's doing like all morning, between, like at 730 to 10. She's between like 107, and 120. But the way I think of that is, is that she's out of bed, she's in college, she has not thought about having diabetes wants for two hours, would it be cool if she was 10 points lower, it would be. And I might make an adjustment to get that. But like I said, we're still dialing in college. So right around 10 o'clock, the 107 turns into 112, that turns into 117 that all of a sudden hits 124. And that's and now this thing's micro Bolus and already, but it took it from 10am until 1056, to put a stop to the rise. And in that time, she went from that 120 to 185. And then over the next hour, it brought her back again. And so and so by noon, she's 95. And I think that doing this for so long, and watching art and grow from a person who was 10 years old, who was with me constantly, and I was able to be very, very, like hands on. I don't I don't think this is terrible. This wasn't food. This was probably adrenaline or anxiety or something. She's in class trying to learn something new. And what this what this graph says to me is that from 8am, I'm looking at a six hour graph right now from 8am. Until 12:51pm I don't see that Arden ever thought about diabetes. And her blood sugar spiked to 180 for 30 minutes and the other 30 minutes was the rise. The other 30 minutes was the fall. So over two hours, there was a rise a spike in a fall. And she still hadn't thought about it. The algorithm took care of everything. She's the first time I hadn't thought about diabetes was around. I'm guessing by what I'm looking at. I'm gonna guess she ate about an hour ago or let me say

Yeah, looks like looks like she had a snack somewhere. It's the first time she's probably thought about her insulin in seven hours. And I just think that that's as important as our blood sugar. Beet. Yeah,

Jenny 1:12:44
absolutely. And so like, is she getting a high alert and like so she's so you're letting Lupe do its thing with auto boluses. And like, you know, she's not getting an alert at like 150 or whatever. And I need to give myself a quarter

Scott Benner 1:13:01
your delightful she gets the alert. She probably mutes her phone. In school, and she doesn't want to do it.

Jenny 1:13:09
Right, right. Okay, so

Scott Benner 1:13:13
completely up, then I would intervene and be like, Hey, you got to look at this thing. And then that's it. But instead of all I've done is I sent her a text today saying hey, at the end of a an infusion site. Sometimes the algorithm might need your help. Meaning Oh, gotcha, meaning that this thing's Bolus thing is little last off, and it can't stop you at all. 186. It's probably because the site's a little older. And it's only bolusing 60% of the time. So that was my way of saying to her if you would have intervened here and just put in the extra insulin even that it wanted that it can't do because it's listed it because it's limited at 60%. That would probably be a good idea. But I didn't say it to her, so that she would do it. I set it to her so she would learn it.

Jenny 1:14:01
Yeah. And so if you were with her, would you have given her a Bolus? Yeah.

Scott Benner 1:14:05
100% you would have Okay, right. But I'm an adult, and I'm paying attention and I'm not going to college and etc. But the fact that it didn't happen is not causing me any Arjuna. Yeah, that's where you're getting stuck. Is that like, yeah,

Jenny 1:14:23
yeah. And I love that you're thinking about it, like, Hey, she's in school. It's like, this is important that she doesn't need to be bothered with this loop is taking care of this

Scott Benner 1:14:34
variable. Yeah, there's my definition of perfect changes because her situation has changed. Yeah, that's all yeah, that's all you were fighting against anxiety. And I run the risk of sounding sexist here, but I'm just gonna say it anyway. Sometimes ladies want everything. Ever notice that? Like, there's no ability to go Alright, I've got 10 Things I need if I get eight of them good day. It's like I say to my wife, sometimes, you're still mad at me for the first thing I ever did wrong 30 years ago, maybe it's time to let that go. So there's some things you just have to with diabetes, you just have to be like, you have to find the balance between not letting everything get terrible. And not and not overthinking every little thing that might not matter in the long run. And take some comfort from this. And Jenny, I have to go in a second. But I'm not saying that poor health is okay. Right. But there are plenty of people who come on this podcast and say, Look, I grew up through regular and mph, and I'm 55 years old. And I don't have any ill effects from diabetes.

Jenny 1:15:48
Yes. And yes, it's like, yeah, they weren't. Yeah, what we have now is amazing. And like, we're doing a great job. And it's like, you know, having a little variability. Wow, just I think, yeah, just relaxing a bit is gonna help me so if you

Scott Benner 1:16:05
and I were friends, and I didn't know any of your details, I'd be like, Jenny, you gotta calm down.

Jenny 1:16:11
Yes, I need to calm down.

Scott Benner 1:16:15
It's pretty much what I would think. And, and I would, I would adjust my ideas of what perfect looks like, okay, and, and probably try to look over your husband's shoulder and see what he's doing and more more, probably specifically, what he's not doing. Yeah, that's it. This is what I have figured out in an hour and 14 minutes. You're,

Jenny 1:16:36
you're amazing. You're amazing. Thank you so much. And we just love and appreciate you so much. So I can't

Scott Benner 1:16:42
I can't thank you enough for having this conversation. Because this is really important. A lot of people feel the way you feel. Not a lot of people are as honest about it when they come on. So this was well done by you. Thank you very much.

Jenny 1:16:54
Awesome. Well thank you

Scott Benner 1:17:04
first, I'd like to thank Jenny for coming on the show today and being so honest and talking through her issues. And I'd like to thank us Med and remind you that you can get the FreeStyle Libre three right now at us med.com forward slash juice box or call 888-721-1514. Looking for a great night out the 22nd annual dancing for diabetes showcase will take place on Saturday, November 5 at 7pm at the Dr. Phillips Center for the Performing Arts in Orlando, Florida, touched by type one.org to get tickets. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#773 Rainbow Connection

Tziporah has type 1 diabetes.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to episode 773 of the Juicebox Podcast.

Today's guest is an adult living with type one diabetes who is also a mother. Her child does not have type one, but does have other autoimmune issues. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice and 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. We have a new sponsor today. So in a moment, I will tell you who that is. But before we get to that, I want to remind you that if you're looking for the diabetes Pro Tip series, they begin at episode 210 In your podcast player, you can find them by searching Juicebox Podcast pro tip in any of your audio apps, or you can find them at juicebox podcast.com diabetes pro tip.com, or on the private Facebook group under the feature tab. If you're a US resident who has type one or is the caregiver of someone with type one, please go to T one D exchange.org. Ford slash juice box and complete the survey. It will take you fewer than 10 minutes. It is absolutely anonymous and HIPAA compliant

this episode of The Juicebox Podcast is sponsored by athletic greens, makers of ag one, I started taking ag one because I don't always have the most balanced diet and I needed some nutritional insurance with one delicious scoop of ag one you're absorbing 75 high quality vitamins, minerals, Whole Foods sourced ingredients, probiotics, and adaptogens Learn more at my link athletic greens.com forward slash Juicebox Podcast is also sponsored today by Ian pen from Medtronic diabetes are using insulin and once some of the features that are offered by an insulin pump, but you don't want a pump. If that's you, you're looking for the in pen from Medtronic diabetes. Get started today at in pen today.com

Tziporah 2:18
Hi, good morning. I'm Sephora.

Scott Benner 2:22
Alright, Sephora. I did get it right before when we were talking. You did something about you. I wasn't sure if you were being sarcastic with me when you said yes.

Tziporah 2:34
It's a good guess that I'd be sarcastic. But you did get it right.

Scott Benner 2:37
So Tziporah. Not Sephora. How many people hit you with that? Like they?

Tziporah 2:45
Like the makeup store? Yes. That's Japanese beer. Nope. Neither of those. Not

Scott Benner 2:50
you. Right. And it's a name you go by? Right? You don't have like a nickname? Yeah, good. That's lovely. What's your deal? You have diabetes, you make a baby that has diabetes.

Tziporah 3:01
I have diabetes, I made a baby that does not have diabetes yet. As far as I know. How old were you when you were diagnosed? I was diagnosed a month shy of my second birthday in 1981.

Scott Benner 3:14
Wow. Wow, about that. That's Young.

Tziporah 3:21
That's young. And I'm old. And that is real.

Scott Benner 3:25
So I I spoke with somebody yesterday, who's had diabetes for 45 years. But was my age. And the entire conversation made me feel old every time something came up, or when they understood my references, which I even found bothersome for some. We're still getting that microphone touching something or you know, don't be sorry, you talking with your hands and breathing. I'm gonna stop. Stop breathing, please. Sorry. I made I made a person recorded a closet yesterday. So they come on, and I immediately I'm like, Are you in a room without carpeting? And they go, how do you know that? And I said, I can't I can't do it. Within here. It's all echoey. And she's like, I could go in the closet. And I was like, Fine. Perfect. So she sat on a stepladder with her laptop on a piece of luggage and very nice. Okay, so Okay, let me break this apart in my head. So I understand. So 81 Was that right? Yeah. And it's 2021 Now, it's 2022 where I am. Is it really? 2022 now, so let's go 91 2001 2011 2021. You've had diabetes for 41 years.

Tziporah 4:40
That's right. It'll be 41 in June,

Scott Benner 4:42
and you're calling 43 old? Yes. All right. We'll see about that. I can now hold you in a second. How old is your child or children?

Tziporah 4:53
She's 11.

Scott Benner 4:55
Okay, and is there any other type one in your family? way.

Tziporah 5:02
I was gonna say no, except I have a cousin of my mother's who died in his teenage years with type one and this was like, you know, early 1900s That was all I got

Scott Benner 5:14
a born before insulin. Yeah, that's just that's really a shame. How about other autoimmune stuff in your family?

Tziporah 5:21
Oh yeah. So my daughter has alopecia. So she has no hair. So every time somebody comments on my hair, my hair is brushed against the microphone. Can you move your hair from a microphone? I think you know, that is a thing for me. And it's not for her. So my my daughter has alopecia. My mother has alopecia. We've got autoimmune thyroid, a couple of other autoimmune things. And my niece and nephew.

Scott Benner 5:47
Well, how is that alopecia is something you're born with?

Tziporah 5:52
No, it's I mean, it's, it sort of is activated in a similar way to the diabetes. So she had a full head of hair. Curly, awesome. Like it was one of the first things people noticed about her before she opened her mouth, which was the second and loudest thing people notice about her. And, and then it all started falling out when she was like three and a half.

Scott Benner 6:13
So you think she just had an illness or something and her autoimmune response? Yeah. Alopecia. What is a child that young? Do do? I mean, do you wear wigs? Or do you just go with it?

Tziporah 6:27
You know, I think every family is different. Every kid's different. She just sort of has always worked what she's had. So she did headbands for a while she occasionally did crazy hats. And now she just doesn't do anything. And feels mostly, I think, pretty comfortable in her own skin about it, which is awesome.

Scott Benner 6:46
Yeah. Is it a complete loss? Like, is her head like, does it look like? I mean, I'm trying to think of how to say this, like, does it look like she just shaved her head? Or is there some hair or how does it

Tziporah 6:58
so alopecia has different manifestations. She has the kind where she's basically got no body hair anywhere. She's got no eyebrows, no eyelashes, no hair on her head. So it doesn't even look like a shave. Because there's like no stubble. No, nothing.

Scott Benner 7:14
I see what other problems that I'm not thinking of does not have in body hair present. Oh,

Tziporah 7:20
well, it's cold season. And so we don't often think about the hairs in our noses and what it does to the snot sorry. But hers just runs. I mean, like, there's nothing to catch it. So you know, when she gets a cold, her nose is real runny. The eyelashes do protect things from getting in the eyes. So, you know, she has to be a little bit more cautious about stuff getting into her eyes. Probably her ears too, although I haven't looked in there in a minute.

Scott Benner 7:47
Hmm, it just alopecia sounds like a radio name from the 80s. Like how you doing? It's alopecia? Yeah, but instead it's horrible.

Tziporah 7:56
Yeah. I mean, it can be, you know, I've talked to her a bunch about this over the years. And as she gets older, you know, her own narrative about it is evolving. So there's treatments now, for example, that can help with turning off the auto immune response and regrowing hair and lots of people. And I said, Hey, you know, do you want to talk to somebody about looking into this? And she said, No, I kind of like the way I am. And so it's just one of those things that I think she's integrated into her identity and how she moves through the world and her friends are down with it. And you know, it doesn't mean she doesn't, you know, get snide remarks or side eyes or whatever, from time to time, but I think she is, you know, she walks around like, she's fine. You know what I mean?

Scott Benner 8:41
Hey, I'm gonna ask a question that will like initially sound slightly weird, but I'm getting to it. So by your name, and I'm guessing Jewish. Yes. Okay. Good guests. Yeah, yeah. Well, look at me, I'm a I'm a real gene. Reason I asked was, how does? How does a person being maybe your daughter's not but how does a person being more dark complected look without like, I guess I'm trying to figure out how much of your hair color makes me think of a person that's being dark complected where is your child? Not classically? All skin?

Tziporah 9:19
She? I would say, you know, she's pretty fair skinned, actually. But I will tell you, like eyebrows make a big difference in terms of somebody's face. Like, I'm looking at your picture on your zoom screen here. And I'm trying to figure out like, what would you look like without eyebrows? That's weird. Sorry, probably. Nobody's ever told you that. But it does really change the look of somebody's face. But it's also been so long since I've seen her with eyebrows that it's just her face.

Scott Benner 9:47
Yeah. Okay. All right. So is diabetes, something you worry about for her?

Tziporah 9:55
I do always have it in the back of my mind. Like as I've listened to podcast up So as you're seeing posts on the Facebook group with parents who are wondering if their kid in illness who's not diabetic is, you know, secretly holding on to a high blood sugar like I've definitely got that sort of all the time. She did do trial that she was negative for antibodies at that time and I never re enrolled or retested or anything, I just am crossing my fingers, you know? Yeah,

Scott Benner 10:23
I don't say it here very often. Or maybe I've never said it, but I sometimes I look at my son, and I'm just like, please don't get diabetes. Again, just like it just I never say it out loud. I don't think it changes my demeanor. But every once in a while, like, you know, if he goes through something, and I don't know, it's like, well, that's enough. Like he doesn't need more like not that anybody needs more. But it's, it does run through my head sometimes like, Yeah, but and I think I look at Arden and I'm like God, like nothing else. Like please nothing else like this is I get an amen. So

Tziporah 10:56
when my kid was little, and we were just sort of peeling off the alopecia thing and her being different. I said, you know, if you look around everybody's data thing, at least one thing. And I say no, my things, diabetes and your things alopecia. And even from a young age, she could sort of start to appreciate that nobody gets from here to the end, wherever that is, like without a something. Her something is quite visible. Mine is like, mostly invisible. But the other thing that I didn't quite crack to her at that age is like, just because you get one thing doesn't mean you'll never get another thing. And in fact, on the autoimmune spectrum, if you get one thing, you know, you might well get another or third or for whatever. So I do wish for her to not have more things like you wish for Arden or you wish for your son.

Scott Benner 11:41
Yeah. No, I I don't know. It's just, I can remember how it felt to find out that Arden had hypo thyroidism. And I was I was so mad. Just like I wasn't angry when she got diabetes. I was sad. I was angry about hypothyroidism. So I angry. No, I felt unfair. And she was still young. And out, it's completely out of your control. So it's not even, you know what I mean? Like, people give you a baby. And they're like you're turning to a person and keep it safe is really your to your to you don't have any other functions early as their parents, right, like you want them to grow up to. I mean, I don't know about everybody else. We had basic like concepts about raising kids like I, I seriously, at the core of how I raise my children, I just wanted that when they left the company of others, that people didn't go kids. You know what I mean? Like I just I wanted them to be a reasonable person. And whatever that meant for them, however, what direction they took it, and I never had many thoughts about that. I just, I just wanted them to be a person that other people didn't like recoil from. And I know that's like, maybe sounds like overly simplistic. And I and that was it. Like seriously, I didn't really think about much more of it than that. And I was doing it, like my kids ended up really well, in that regard. And then all the other stuff I was supposed to do. You know, I fed them and gave them clothes and kept them warm, and they're loved and they know it all that worked really well. And then I just couldn't keep them from being sick. And it just feels like it feels like

Tziporah 13:27
to say it sounds like defeat.

Scott Benner 13:30
Yeah. And it's also one of those things where they're like, listen, the army just came in and kicked your ass, they'll be back. You won't be any more prepared to fight them off the next time

Tziporah 13:40
and you won't know when they're coming.

Scott Benner 13:43
So you feel like a you feel like a victim a little bit. And that's unfair. Because like you said, and by the way, I've said on here a million times and really believe it. Nobody gets out alive. You know, nobody gets through it unscathed. Everybody gets a thing. And so I even feel that that's fair. But

Tziporah 14:04
well it's different when you're looking at your kid your non asked kid I mean like the one that you brought into the world and invested all that stuff and like I would guess that many parents look at their kids and just wish for their path to be completely smooth all the time. You know, I'm also the kind of person who thinks in retrospect of course not what not when it's my own kid but whatever bumps they have are going to help them be the person that you want them to be you know, like how they manage adversity or how they relate with other people through it or what they own and what they don't want and you know right now becomes part of that

Scott Benner 14:42
Yeah, I mean I could make an argument in a similar but different direction I first of all I'm a pressure makes diamonds person myself like I don't think that I mean, I don't know to use like a big example and an unfair one because I don't know or like I wouldn't want my kid to be a Kardashian. You don't like that kind of thing. Like, I think you need some sort of some some troubles gotta come your way, right? You have to learn how to fight through things. And but I only say that I guess with comfort knowing that my kids are kind of psychologically centered. Because if my children were depressed or anxious or super anxious or something like that, I might even say to you like, oh God, like, you know, why can't their coach or their teacher or whoever, like cut them a break? They don't you know, they don't? I don't know. I don't see any of that stuff much differently, I guess. Yeah. It's like you said, it's the thing that impacts you is the is the thing that you have a sensitivity to. And I may have just referenced something that we talked about before we recorded so sorry about that. All right. Yeah. All right. Why the hell are you on this podcast? Let's figure that out.

I had tried two different supplement drinks, and did not like either of them. And I kind of gave up. And then Athletic Greens reached out to me and asked if I'd be interested in talking about ag one on the podcast. And I thought, well, the other two didn't work. Maybe I'll like this one. So I told him Yeah, listen, I gotta try it first. Because if I don't like it, I can't talk about it. And I was really pleasantly surprised. I mean, beyond pleasantly athletic greens, makes it product ag one that is easy to drink for me. doesn't cause all that. pain and bloating that I got with the other drink. It's not gritty and nasty. It doesn't leave a weird aftertaste doesn't make me make a face I don't stand at the counter thinking God you can do it Scotch drink a trinket it's really easy for me you don't know me that well but I have a tough time with I can eat things I don't like and he one must be something I like because I'm not. I'm not running away from it. Usually I'd mix up the other one and look at it for like an hour but this is great. Get up in the morning. mix mix mix. Here I go one scoop of athletic greens and some water. Knock it down. And I move on my day. It really is super simple. No matter your lifestyle. You can use ag one keto paleo vegan, dairy free or gluten free. And ag one contains less than one gram of sugar, no GMOs, no nasty chemicals or artificial anything. And it still tastes good. How do they do it? I don't know. Athletic Greens was created when its founder experienced a ton of gut health issues and ended up on a complicated supplemental routine that cost him like $100 a day. But you can have ag one for less than $3 a day. And why not invest in your health for an amount of money less than a cup of coffee. You can get a big one from athletic greens, recommended by professional athletes trusted by leading health experts such as Tim first. Ooh, Tim first is a name for me to Scott I take it does that count? To make it easy? Athletic Greens is going to give you a free one year supply of immune supporting vitamin D and five free travel packs with your first purchase. All you have to do is visit athletic greens.com forward slash juice box. Again, that's athletic greens.com forward slash juice box to take ownership over your health and pick up the ultimate daily nutritional insurance. Last thing if you're already using ag one no reason you can't buy it through my link. You don't I mean hint hint. Ag one. Get it from Scott athletic greens.com forward slash juice box links in the show notes links at juicebox podcast.com. Today's podcast is also sponsored by Ian pen from Medtronic diabetes, use my link in pen today.com To learn more about the endpoint, which like to take the right insulin dose at the right time. The pen is a reusable smart insulin pen that uses Bluetooth technology to send dose information to a mobile app. A mobile app that sounds like it's on your phone, offering dose calculations and tracking implanted helps take some of the mental math out of your diabetes management. You know what I said earlier about some of the functionality that pumps have that you don't get usually if you don't have a pump? Well the impact gives you your current glucose right on your phone, meal history, dose history and activity log reports glucose history active insulin remaining and a dosing calculator. You might be wondering how it does all that go check out in pen today.com To find out more. You also might be thinking this sounds incredibly expensive, Scott? Well guess what? You may pay as little as $35 for the M pen offers available to people with commercial insurance terms and conditions apply. In pen requires the prescription and settings from your healthcare provider. You must use proper settings and follow the instructions as directed. Or you could experience high or low glucose levels. For more safety information visit in pen today.com.

Tziporah 19:51
You know that's a really good question. I was listening to some of your other episodes where you ask people like what made you want to do this and so I went back to my litany of Facebook message Just to you, and I'm thinking, why did I ever reach out to him? You know, the first couple of things I sent were like, Hey, have you ever thought about this on the podcast? Have you ever looked at that? And mostly, those questions were out of my own experience are wondering, like, is this a diabetes thing? And then one day I wrote to and I was like, Look, I don't really know if I have anything that would be of use to anybody else. But here's all the stuff I got. And if any, it would be cool. Let me know. Yeah. Well, and I'm sure and then you're like, Oh, you're short for let's get you on the podcast.

Scott Benner 20:30
Don't give away that I don't have any real insight into sort of, I don't know, rules or anything like that. They do. Like I'm really I'm sure. And I'm like, good enough to get on. We can

Tziporah 20:42
Well, I mean, in fairness, you were like, Oh, you're short. You can wait a really long time before you record. And if you still want to do

Scott Benner 20:48
it and do it. Well, that that is and I do feel bad about that every time. No, that's all right. Yeah, it is such a long i We figured it out the other day. It takes about it could take about 15 months, from the time you email until the time your episode goes live. Yeah, yeah. So.

Tziporah 21:08
So one of the things it's a good problem to have. Sorry, go ahead.

Scott Benner 21:11
Oh, no, it's certainly as I go into a slight panic and flops. But every time I think about what would happen, I complain the whole time, look at my schedule, I record every day, I need a break, too. There are times where my voice hurts when I'm doing it. And then I think I'll just take a week off. And then the other, the other voice in my head is like do not do that. You're gonna six months from now, you're not gonna have content when you want it. So the one thing I thought you said in your notes that was really interesting, was that you said, talking about training doctors and NPS about being good human beings. Yeah. And I'm dying to know where that came from. Yeah,

Tziporah 21:49
so I the short version of the long story, or maybe the medium length version is when I was a kid, like, I remember sitting in the doctor's office in my pediatric endocrinologist office, and thinking to myself, that's what I'm going to be when I grow up, I'm going to be a doctor. And not only am I going to be a doctor, I'm going to do diabetes, and I'm going to do it with kids. And probably lots of kids with diabetes have that thought from time to time, but I was like, these people suck, which I'm sorry, I won't. Not all of them. It. But I remember thinking that as a kid. So I sort of set out my my path from that age, whatever that was, you know, probably younger than my kid. And that didn't go as I planned, mostly because I failed anatomy and physiology. I learned in my classwork that I probably wasn't suited for many reasons to go into medicine in that way. But I ended up sort of circling back into medicine, through the pathway of getting my degree and family therapy, and I'm thinking about healthcare in a really different slice. But probably, like my niche area is about that intersection between health and illness and how we experience it as people and recognizing that lots of health care professionals don't really get good training and how to attend to that part. So there's really good evidence based guidelines for managing all kinds of things. But most people don't know or don't get good training or practice in how to sort of meld that with, like relating with other people. So I spend a lot of my time in that domain training people.

Scott Benner 23:19
You just made me wonder how many people decide they want to be doctors then realize they wouldn't be good doctors and do it anyway.

Tziporah 23:27
Well, right I, I can't speak to that. Speak to that I probably can't even share stories without getting into trouble. But I will say, you know, being a healthcare professional now is so much more than just the medicine. But like you have to get through that door of rote memorization and tons and tons about the human body, which is like super fascinating. I probably wasn't fascinated with all of it. I'm probably I've always been fascinated with the people part. So I think I probably found the right path. For me, that was the balance of that.

Scott Benner 23:57
So there's this thing, and that's in my head right now because it happened earlier in the week, I recorded an episode with a person who has had diabetes for a long time, and had been told over and over again, by doctors what a good job they were doing. As the years went on, this person came to realize that they weren't doing a quote unquote, great job. It was very once he was higher than it should have been. Their variability was higher their health wasn't what it could have been all this stuff. And they recognize that and they had pushed through and made changes that that were, were good for them. But when they talked about their health care providers, they had two different doctors, one that they loved and thought was terrific, and one that they really hated and didn't like at all. And as I picked through it, I learned that the one that they loved was the one that was telling them they were doing great. And the one they hated was the one that was telling them that there was some ceiling here and play Just to improve. So was fascinating because from a, from a physician's perspective, the ones they didn't like, were the ones that were trying to help them. The ones they did like were the ones that were telling them, hey, it's fine. Now, you all are never going to hear this episode, which is a shame. But because a couple of days after I recorded it, I got a message from that person. And they asked me not to air it. Because what ended up happening during the conversation, if I'm, if I'm understanding correctly, from what I heard during the conversation, and then what I saw later from the note is that I believe this person realized, while we were talking, that for a decade or more, that they had, they were doing something for their health that wasn't as good as it could have been. I think there was, I don't know, I don't want to ascribe their feelings, because I'm not certain but shame or guilt, or sadness or something. But I think what happened was, is that the recording turned into a therapy session, and this person had a breakthrough during it. And it wasn't something they wanted to share with somebody else, which I completely understood, immediately deleted the episode. I didn't want that person to be uncomfortable. But it's fascinating to me so much so that it keeps coming up in my head. How, in their mind, they picture the people who were not hurting them, but not helping them as much as they could have been? favorably? And vice versa. I thought that was really something and I wonder how much that happens to people with diabetes?

Tziporah 26:34
Yeah, I mean, my, I think it's a really good wondering, I think most health care professionals want to be helpful. And the person who was saying you're doing a great job, probably thought they were being helpful. And so to to the person who said, You got to do better. And, and you know, and honestly, each one of those scenarios is sort of like what's the rightest match for the patient, in this moment in their life in whatever course of their disease they have. And that's really tricky for other people to like mine read. So part of like, a lot of the focus that I have in my work is trying to get people to ask, like, where are you on this spectrum of? What are all the things that you need from me? How can I be helpful to you? Where are you relative to your own self management or what your next goals are? Partly because we can't expect everybody to sort of do a one off custom job of healthcare, except that each one of us is different and needs different things. across the lifespan, you know what I mean? Like what I need now for my health care team is different than what I needed when I was 18. Thankfully, yeah,

Scott Benner 27:41
I also what you're saying is making me thinking that made me think about, what if that doctor who was telling that person like you're doing great, you're doing great, what if they saw something else about them? And they thought they can't handle any more pressure? I can't pressure this person, hey, we're keeping their agency in the eights, at least it's not 10. And then, from there, I wonder, Is that really your? Is it really fair for a doctor to make that decision? If that's the decision has been made, which is sure your health could be better? I shouldn't be telling you that. But I don't think you can handle like, is it your job to decide who can handle it? Or is it your job to say, Listen, I don't know if you can handle this, but we need to get everyone see down or you're gonna have some long term complications. Do you know I'm saying like, where do you? I mean, it seems like if it's not the doctors job to assess you, Then whose is it? And then it even makes me consider the other side on the patient side. They do they even know that about themselves. And by the way, at this point, now I'm philosophizing like, I'm not talking about the original person anymore, you know, but like, what if I am a person who's high anxiety or depressed or just, you know, I don't look like I can handle it, or I don't look like I understand the math or I've proven I don't understand diabetes, how much of your doctor's job then becomes life support and not? And not health? Support?

Tziporah 29:10
I mean, if you're asking me, which I mean, kind of your,

Scott Benner 29:12
because there's no one else here.

Tziporah 29:15
I mean, yeah. My personal opinion. And if I look at like all of the health professions and their ethical codes, and like, what, what we're all responsible to do, when we step into that role, we have to be able to give clear, accurate information to patients, even if it's hard, but like, we don't have to hammer them over the head with it. So it's one thing to say, you know, what, you're working really hard on this, you're a one C is currently eight, like, let's look at the things that you're doing that will help you continue to be healthy. That's really different than Oh, you're good. Like, don't sweat it. So I think there's ways to keep sort of inching people toward what we know is gonna like be better for them in the long run and avoid complications without making them feel terrible, but What's hard is that you don't I always know what's in the eye or ear of the beholder. So some people are not going to feel great about hearing this eight isn't good enough. Except that like the right combination of this is what we know. These are, what the risks are, here's how I can help you. Like, that's the conversation I want people to be having with patients, you know, not avoiding the the scary stuff, because if we just sort of leave it there, then it won't make somebody anxious, like that person if they're anxious or depressed. Like they still need guidance and help to get there.

Scott Benner 30:31
I like talking to you. Why is that? Thanks? No, listen, I talked to a lot of people. And I've never had a bad conversation, because I think everybody's interesting. But you are pacing me. This is the pace I as crazy as it sounds like this is the pace I prefer the conversation you and I are having right now. But other people's energy dictates the pace of conversations. For me, and yours is a good one. I like your tone everything this is I didn't know you were a therapist. See, it's so much better? I don't know. Thanks. It's really, truly wonderful. I was just like, Oh, she's a therapist. That's interesting. Like you could have said anything as as your job. And I would have been like, oh, that's fascinating. I had no idea. I think that one of the I mean, I don't know how obvious it is to everybody, maybe therapists see it a little more who listened. But there are themes that I'm trying to reinforce quietly in the podcast, and the ability to talk to each other is one of them. So when I think about that somebody could have gone through medical school, ended up with a great degree and an understanding of a profession, and then can't communicate it as someone that's just like, I mean, it makes you feel like, like, what, why are we even trying? Like they get it? Like, I mean, you can make a doctor who can understand the medicine, but can't keep you from feeling attacked, when they explain it to you. It's just terrible. I mean,

Tziporah 32:09
I yeah, I think it is terrible that it feels like we sort of are, we shouldn't have to choose, none of us should have to choose. But there are also different skill sets. Like when I was pregnant, I remember somebody saying to me, would you prefer a doctor who has really good technical skills related to the delivery, which was going to be complicated? Or someone with a good bedside manner? And that question always stood out to me because I'm like, wait a second, these are not mutually exclusive things. Why can't I have both of them? You know, in reality, the question was, I'm thinking of these specific people and this person, her strength is this and this person, their strength is that, but you know, part of my mission and my work, and in my sort of every day thing is probably not unlike yours. Like, I want us to be good to one another. So whether you're a healthcare professional, or any other kind of person, like how you approach others in your world is really important. And I think a lot of that stuff is teachable, practicable and bearable. That's not a word,

Scott Benner 33:15
but you just have to want to do it, are they? So it's so funny, you brought this up as an exponent, as an example, because my wife has given birth twice. The first time she got bowtie, no personality that to speak of almost no facial like movement while you were discussing things with him. Great doctor, um, dry and calm. My son came out with a knot in his umbilical cord. And I went to cut the umbilical cord and I saw the knot. And I pointed to it and said, Is that a problem? And he held the baby towards me coal, and showed me that it was alive and when Apparently not. I mean, like that was this. Like, that was the extent of his, like bedside manner. Yeah, I mean, just a monotone and quiet and a slow speaker. But man, like you couldn't get a person to say, this isn't the guy you want in the room, if something gets sideways, you know, then the next person comes for Arden. And he's full of life, and gregarious and everything else. And as Arden's coming out, he's across the room, and I see this like big eyes behind his mask, and he runs towards Kelly's vagina as if the baby is about to fall out of it. And and he's almost look shocked by it. And I have no comfort while he's delivering the baby whatsoever, because he's just sort of like,

Tziporah 34:43
like, you sit and have a beer with him but like he was you forgot he was going to be delivering a baby

Scott Benner 34:48
wonderful guy was pretty upset that he was in charge of catching art. You know, and what, why, why to your point, like Can't we blend those people together?

Tziporah 34:57
I did in fairness. I do. think there are there is increasingly like less gap there. I mean, I think there is more and more awareness. Like if I look at the newer health care providers who are entering the field that I get to work with many, many more of them are way more sensitive to all kinds of things like, to the people skills, to emotional health and wellness to mental health stuff. And, you know, part of it probably is the specialty that I work in and practicing. But also like, I think, I think the generations are like, wait a second, we actually need to bring a lot of different things to medicine, or to healthcare and and people are selecting when they have those skills to so I don't think it's really like an all or nothing thing. And I do see, I do see it's getting better.

Scott Benner 35:45
Do you believe? Just your opinion, obviously, but are they more aware? Because they want to be? Or because they think they have to be? And does it even matter? why they're doing it as long as they're doing it?

Tziporah 35:59
Yeah, I mean, I think it's probably both. And it probably doesn't matter what the Genesis is like, you know, here's the other reality, which is going to sound sort of silly when I say it, but like health care, people are people. Yeah. A song or like a Kermit the Frog situation. But, you know, I think there are so many things that can get in our way of connecting with another person. And that's true no matter what kind of work you do. But I think in healthcare in particular, more and more people are coming with those skills already in there. They're coming with different life experiences, and and what training programs like medical school or nursing school are selecting for now, when they're looking at applicants is not just test scores. They're looking at a more well rounded, sort of socially connected kind of person now, which I think is driving that change that we're talking about.

Scott Benner 36:52
Hey, a minute ago, when you reference Kermit the Frog, were you thinking of rainbow connections when you're salutely? Why did we both know that?

Tziporah 37:01
I don't know.

Scott Benner 37:03
As you said that, I thought, whatever she just said that little like, made up t shirt slogan, you said? I thought it's reminding her of rainbow connection.

Tziporah 37:14
And or poor Barbra Streisand.

Scott Benner 37:17
That's a weird, there's something about the Pentameter of what you said, that made us think about I wonder why that isn't that interesting languages. I'm fascinated by people and how they speak to each other. By that, that's gonna remain the coolest thing that happened to me this month. I think that's awesome that we both had that thought at the same time. We should probably talk about diabetes. Sure. Let's do that. Do you have any idea how many times during this podcast? I think I should probably talk about that. But I've been doing it for a while and I just I'm very interested by people. So. Okay. So if you were if you had diabetes that long ago, you started on pork insulin, beef, pork? Yeah. Okay. And then transitioned in the mid, you probably only had to do it five or so years, right? Yeah, probably. Okay. Cloudy, regular mph after that. Yep. All right. How long did you that for?

Tziporah 38:17
You know, I don't really know for sure. Partly because I wasn't responsible for myself up until, you know, yesterday. So when I was really little, I mean, I think I followed that path, probably through on the mph and regular. I mean, probably at least till I was my daughter's age. She's 11. Okay, I got my first pump when I was 21. But I was on multiple daily injections up until then. But by that time, I think had graduated. I don't even know that I ever made the leap to Lantis, actually.

Scott Benner 38:53
So what is your health like, now? Did it work out?

Tziporah 38:59
I mean, I'm, I'm here talking to you. So so it's working. Okay. In general, things are pretty okay. From the diabetes perspective, I do have some retinal complications, which just sort of feels like an unlucky break. You know, I was listening to you talk earlier about some other folks you've talked with, and you know, or maybe I was listening to a podcast episode. In any event. You know, there are people who I know anecdotally who have had diabetes 40 5060 years and sort of remarkably have zero complications. And I grew up and I was like, Oh, I'm going to be that person. No matter how screwy my adolescence is, no matter how messed up my control was up until I decided to do something different with it. And then I remember the first time somebody said to me, Well, I see these little hemorrhages in your eye and I was like, you've got to be kidding. So I thought, well, I'll just be one of those people who has this, you know, little thing here. And it's not really going to go anywhere. And it now in retrospect just sort of feels like one of those things that comes when you've had diabetes for a really long time that I wished wasn't a foregone conclusion. And most of the people I talked to in healthcare say, Well, if you've had diabetes 40 years, like something's going to happen, the odds are incredibly high. Except I know people who don't so I mostly feel unlucky. But it's probably more complicated than that. Yeah,

Scott Benner 40:27
I listen, anecdotal, like times 1000. But I seem to be the first thing that people have a problem with, if they're gonna have a problem like that. That one seems more. I don't know. I don't I don't want to say it happens more often. But the frequency that I hear about it while I'm talking to people, is and it's usually people coming right out of that timeframe, where you were diagnosed to, just that, that like, you know, the story of like, I used to inject once a day, and then it was twice a day. And then I did this one, and we didn't really count carbs. And I just, you know, we didn't have a meter for a long time. Right? You know, but you were diligent about doing what you were supposed to do.

Tziporah 41:16
You know, mostly, I mean, it legitimately blows my mind when I look at people in my social circle who are new to diagnosis who have kids who are and I'm like, Oh, my gosh, you are hitting the ground running with like the absolute best. And you know, actually probably in retrospect, I did too, but the absolute best at that time was like urine dipsticks. Standard Issue injections of insulin and like you roll the dice and hope it works. Okay. You know, when I was a kid, my A onesies were always in the eights and nines. And I wrote back and looked at notes from my doctors at that time, and they were like, yep, everything's stable. Looks good.

Scott Benner 41:55
Yeah, that was the hope for really well, right,

Tziporah 41:58
because I had scary lows, too, and scary lows, and a little kid is scary, you know, that probably better than anybody. So I think, you know, we all I say we all everybody did the best with what they had, at the time, the best of what they knew the best of what the treatments were. And I think, you know, it just sort of stinks that, that decade, that first decade in particular, or maybe the first two. You know, if we transpose that a diagnosis in the early 2000s, or this decade, like things would probably look really different.

Scott Benner 42:30
Yeah. So no, I mean, I think it's, it's maybe akin to saying, you know, GE in 1960, can you believe we got to the moon and that piece of tinfoil, you know, wouldn't it have been great if we had Elon Musk's rocket, like we sure would have been, but we didn't. And there was no way to so you can't feel even. I mean, I guess, if you want to be healthy about it in your mind, you can't look back and just say, Oh, I wish it was different. Because it's, it's what it was. Right? Yeah.

Tziporah 42:59
I mean, like, I can wish it was different. And except that it is, as it was, you know what I mean? Yeah.

Scott Benner 43:04
I mean, I feel like if we could, like somehow resurrect somebody from the 1800s and say, Would it have been cool if you had a pickup truck when you're trying to get to Oregon? You know,

Tziporah 43:11
like, avoid that. dysentery. You hit

Scott Benner 43:15
Oh, my God, I don't think the hours from the from the Native Americans would have even been able to go through your Chevy Tahoe, like Greg. So it just, you know, it's not the same. You just, it's not apples to apples. You can't compare them. It's just interesting to hear. For me. I think. I like to hear the conversations, because I imagine that newer diagnosed people, they still got diabetes, or their kids got diabetes, it doesn't matter to them that they can have a CGM. Now, you know, I think they need the juxtaposition sometimes. Yeah. You know, so

Tziporah 43:48
I'm very grateful for all the technology. And, you know, I was, I was probably a late adopter to a lot of it. But now that I have it, like, I'm not sure I could, I mean, I can't ever go back sort of awesome.

Scott Benner 44:00
Right? Well, I think I think that if you're having diabetes and sticking with this line of stupidity when I make things up in my head, you have a Chevy Tahoe. Now you're trying to push West. And good news. The Cherokees did not upgrade to bazookas. So you're, you're still doing a difficult thing, but it's better equipped. Yeah, you're way better equipped. Yeah. So for sure. Anyway, you grew up in a family with a lot of children. I did. Like brothers and sisters more than you can count on one hand or

Tziporah 44:36
I have to think about how many fingers I have. I'm one of seven kids. And five of us, six of us mostly grew up in the same house for a number of years and then mostly it was the five younger five.

Scott Benner 44:48
Okay. Did your diabetes cause any changes to family structure or turmoil? Anything worth talking about?

Tziporah 44:57
Yeah, I mean, I think honestly like how Why even that to my current profession as a family therapist, and working in healthcare probably has a lot to do with how diabetes shaped me growing up in that family, like we are. All my siblings, we are accomplished smart, funny, likeable people. Like definitely fun to have it a party fun to have our own dinner. But like, we're we also have a lot of intensity among us. And so you introduce a very sort of significant illness and a very little person into a dynamic that's already kind of like a lot of energy, because there's a lot of kids and people are going in different directions. It really, it forces that family unit to do a lot of things differently. So whether it was around needing to wait to eat dinner, or who's going to give me my shot, or who's going to make sure I have this, that or the other thing packed before I go to school. You know, I think it was a it was part of the fabric of my family's life growing up my siblings in particular. And, you know, it's sort of hard to say what would have been different if that wasn't the case. But it also shaped like how we grew up with one another how they related with me or what they expected of me, or, you know, how long it took for them to see me as a grown up sibling, as opposed to somebody who's vulnerable or a little, you know,

Scott Benner 46:18
yeah. Do you ever talk about it with them as adults? Oh, yeah. Do you? Do you think they had any impacts on them themselves? Personally?

Tziporah 46:29
i Yeah. I mean, it's sort of hard to say exactly what all the impacts are. I think some of them would say, well, the diabetes, like took things away from me. And whether they would use that language or not, like, that's how I imagine it, because it does, you know, diabetes, at that time in my family took up a lot of space. So already, there's a lot of kids, all of whom each of them have their own needs, like on an emotional level on a day to day schedule level. But diabetes, sort of like forces everything to turn toward it, you know? So a low blood sugar or an injection or things that happen have to happen on a schedule like it someone else's needs can't be more important than that, at that time. Yeah, at least that's the way it was when I was younger. So some of them would say, Well, you know, I think diabetes took stuff away from me, others, I think, would say, I'm talking about them. Like there's like a million, but they're basically are. Some of them would say that it it made them more sensitive to sort of other people's challenges. I think some of them would say it forced them to develop more responsibility, especially at a younger age than maybe their peers. I probably had added to conflict. Yeah,

Scott Benner 47:42
I spoke to someone the other day, who was whose parents put the siblings in charge of taking care of the kid at school. They were all they were all in the school together. And so the older kids had to go give the kid her shots. Yeah. And I thought, wow, that's kind of I actually thought what a brilliant use of workforce.

Tziporah 48:03
I mean, yes,

Scott Benner 48:04
but But you know, you mean, like, I had my I put myself in that position, my little kid off at school. Things Not, not like they are today at some schools where you can, you know, get a 504 plan and be like, Hey, listen, you know, you take care of my kid, or we're gonna sue you. And, and that the parents were like, Okay, what do we have at our disposal? Here? We have other kids in the school. All right. Yeah. You guys take care of your sister? Yeah, I felt like I was crazy. Like, well, brilliant.

Tziporah 48:33
Yeah, I mean, I think we definitely had that in our family. You know, whether it was always like, spelled out like, this is what your job is where it was sort of this is what the moment needs of you. And I imagine, although I don't know for sure, because I was little like, I don't really know what those conversations were in advance, like, hey, how do you feel about this? Can you help me with this, I'd really appreciate it or if it was just, it's dinnertime, give your sister her shot. So you know, I think how you broke her all that stuff probably makes a big difference how you negotiate it with the kids. But I do think there was a fair bit of that and my family.

Scott Benner 49:10
Here's a question for you that that leans into your professional a bit. By the way, how do you practice? Is that like, private from your home from an office? Do you work for an institution?

Tziporah 49:19
It's a really good question. So I actually don't do a ton of clinical work on my own, like I see a few people now. But mostly what I do is teaching and sort of having administrative roles with other larger groups. So I work in a medical school, and I work in a couple of our medical schools, clinical departments, where I'm doing a lot of the training and education that you and I were talking about. But in terms of like my own direct clinical work, I do a lot less of that now than I used to.

Scott Benner 49:48
Well, you seem like you would have been really good at it. I hope Yeah. Well, how much of your job is theoretical? Like, I don't know what I mean. Let's fit You know what I mean? So people change through generations year to year, etc, their sensitivities change. You know, I'm going to tell you right now that I don't think I'm a perfect person. And if you could listen to me on this podcast and see where I probably have deficits growing up and stuff like that, but I grew up in a world where if I misspoke, someone would slap me. Yeah, you know, if my dad lost his temper, he might keep slapping me. At this point in the world, you know, the one of those incidences would have had me taken out of the home even. And yet, it didn't happen to me, like very frequently. And here I stand before you I'm a fairly well adjusted person. And so that's I don't know, I mean, I'm dating myself now. 3540 Oh, geez. My god. 40 years ago, me, I was trying to give myself something in the 30s. But the truth is, that that's not fair. 40 or more years ago, I'm describing to you, right, it's now an unheard of idea in polite society, right? You would not slap your kid in the face in a restaurant for saying something fun, and just try to imagine me as a little kid, no, no malice. I'm just joking around and being stupid. And, you know, sarcastic and my dad didn't get the sarcasm, by the way, you know, fair enough, right? worked all day. And I'm in a, you know, a hard job and he didn't have money. And he came home and like the five seconds that he's got to, like, eat dinner. I'm, you know, I'm being an idiot. And so the way you would have talked to me back then, if you had a therapist job back, then you would probably have said to me, Hey, listen, dad works hard, and he's tired, and he ain't up for your bullshit. Stop it. It's great. Like that might have been, that might have been what you said back then. And now you'd say nobody can treat you that way. Your safety is important, whatever else would go along with it? And my question is, then what's going to happen 40 years from now? Like, what's the therapist gonna say 40 years from now? So is what you're telling me right now? Just theoretical, or is it? Implicit to the time?

Tziporah 52:20
Yeah, I mean, I think it's an interesting question. My, my personal approach with my work is family and systems. So like, even if it was 40 years ago, or now, like, I'm going to be looking at what's the sequence of interactions between you and the other people who are important to you? And how well are they working for what you need to do? So like this part that I'm going to say, sounds kind of theoretical, but I'll make it kind of practical. Like if you say, it's important for me that in my family's home, we have loving relationships, and we look out for one another? Great, you know, like, that's a pretty easy to understand principle. But then it's from that I can say, well, how is you back in and your kid at the dinner table? Consistent with that, like, is that working to get you where you want to go? And I think in that way, I take whatever is theoretical, I combine it with what the people in front of me say is important to them. And then I try to figure out how to help them close the gap. You know what I mean,

Scott Benner 53:16
right? Now that makes sense. It does. I just, I'm not like, I hope I don't sound like I'm belittling what, what you're doing, I think it's really important, and I agree with it. Moreover, I'm just playing devil's advocate, and trying to get to the, to the other side of the idea.

Tziporah 53:33
Because you're asking about, like, how standards change over time? Yeah, like, what's acceptable and what's like, desirable? You know, I gotta say, like, I do follow things like, what a developmental people say, and what do they say is good for kids, and what's good for our brains and what's good for sort of our psychological health, I do look at researchers and scholars and what they are discovering about how we get to be good people, you know what I mean? And so I do try to incorporate those ideas. Most people would say, being in an environment where you're worried you're gonna get slapped is probably not great for lots of reasons. So even if that were to evolve in a different way, in the next 40 years, like I probably try to be thoughtful about the family's values where they want to go as well as kind of what the science says,

Scott Benner 54:23
Yeah, I'm just looking back on my own life. Like, there's probably a level of I'll call it anxiety, but it's awareness. Maybe like, you know, like, If I lived outside in the Serengeti, I'd always wonder if a cat was going to eat me. Like like that kind of like it was sort of like that a little bit like you because you don't say, I mean, when you're a kid, you don't say flippin things. You don't plan to save them, right? Something happens and it fires off, like whatever part of my brain makes me say something stupid. And then I say something stupid. And then the next thing you know, you're like, you're like defend in your head. You know? It and there's nobody even around you just sort of like you kind of get that like, turn over your shoulder feeling like, oh god, did someone hear me say that? But But what about boundaries, though, like? So? What this is making me think about is, do we? Do human beings have limitless possibility? And if you just let them move in the direction that feels right to them? Will they blossom in a way that I can't even imagine? Or if we let everybody just do whatever they want? Will it be the like fall of society? Does that? I mean, that's a big question.

Tziporah 55:33
Yes. Yeah. Right. I think yes, to both of them, right? Like, we are social beings, we live in communities and cultures that have norms and rules for how people should be in that space, right. And it's different. Like I say, to my kid, all the time, different families do different things. What I'm trying to explain to her is that family culture, when she's in my family, this is what we do when we're here, and other people may do something different. So I think there's always going to be that, like, blend of what the people around you who are important to you think is acceptable and what isn't. But it's also true that I think we have limitless potential. So I don't think they're mutually exclusive.

Scott Benner 56:12
It's interesting, because we need a mix of people in my opinion. Right? Right. And but if we all were at Burning Man, 24/7, who would make the cars and make the electricity and stuff like, yeah, right. And, and yet, sometimes people fall into categories, they never break up. My wife's an incredibly hard worker. And she's just always going to be. And I don't think I don't know what I'd have to be able to provide for her to make her go, hey, you know what, I don't work anymore? Like, would it be like, how many millions of dollars? Would I have to put in a pile before she went, Okay, I'm comfortable not working? Or does it have nothing to do with money? Like, I can't even I'm not even sure if it's just how she's wired? Or if, you know, I was talking with somebody the other day about, you know, the pressure we feel to leave art and some money in case I don't know, like, what if she becomes the near to well, and can't afford her, you know, her medications or something like, we want to have a little nest egg for her, but then that makes you feel pressured to leave the next egg for the other person. And we don't make that kind of money. We're just piling up money in the corners. You know what I mean? So, so like, you're working so hard to amass something, just to it's an insurance policy? And in the case of my son, just because I wouldn't want to do one for one and not for the other one. Yeah. But by the time if we're able to accomplish that, by the time we accomplish it, it's gonna kill us. Yeah. You know, and I don't know if we would have thought of it that way if Hardin didn't have diabetes? Yeah. So its impact. You know, you said that impacts, it's hard to know what the impacts are. We were talking about something earlier. And it made me think that even the place you live, right, whether it's an apartment, or a house, you know, your life if you buy it, me moving into the house, I'm in now, in some ways that I'll never understand shaped my life and my children's life. And literally, if we would have bought the house across the street, there would be things about us that would be different now. And it's just it's fascinating to to wonder how those little variables impact, but you're never going to know.

Tziporah 58:27
Yeah, just I mean, thankfully, we'll never know. We could like, probably make ourselves nuts. Yeah.

Scott Benner 58:33
Yeah. We're off the track again. Sorry. How do you manage your diabetes right now?

Tziporah 58:41
You mean, like good or bad? No. What are my tools? Your tools? Yeah, I am on a T slim pump and Dexcom. And, you know, that is working pretty well for me. Overall. I did have, you know, a different pump previously with a CGM. And I was listening to some of your questions earlier about the evolution of those tools over time. I remember being at a diabetes fundraising event a bunch of years ago, and I was talking to one of the other people there who had diabetes, and she's like, Oh, do you use the, you know, the CGM? That was the one that went with my pump. And I was like, Yeah, I mean, sometimes she's like, What do you mean? Sometimes I'm like, Ah, it feels like I'm harpooning myself. When I put it in, I don't like it. I use it sometimes. And she's like, why wouldn't you use it all the time? And I think at that time, I was like, you know, I probably was more ambivalent about a lot of things than I am now. But when I look at it now, and like, this stuff is available to me, it works pretty well. It could always be better, I could be better, but you know, I can't imagine not using it.

Scott Benner 59:53
What What, um, oh gosh, what was I just gonna say, my brains and about harpooning bye bye. In the home, my brain let me down. happens more like, like, like goodness, you should my desk is too cluttered right now. I need to like clean it off, because there's too much that I can see while I'm talking. I know that sounds crazy, but alright, so

Tziporah 1:00:20
you. So I'm on a tandem and

Scott Benner 1:00:24
not my question. Thank you. Do you use the algorithm? Do you use the control IQ? Or they do use a control IQ? Yeah. How do you find that? And was it difficult to do? Because you've been why many so long? Like to me, I wonder if a person who's had diabetes as long as you have looks at control like Q or you know, any of the other like algorithms? And is it like getting into a modern car and letting it lane keep for you and speed up and slow down? Are you like, I'm not letting something else do that? Or are you happy for it?

Tziporah 1:00:56
I mean, sort of both like, I am happy for it to be doing the thing. Like when I go to sleep, and I get up and I'm like, oh, that's like a super flatline, I would not have been able to do that on my own I don't think or if I could have I wasn't doing it before I had that have the system. That being said, there's times when the the automatic car, the self driving car, I'm like, I don't like how you're driving this. I don't prefer that. But then I go in and I try to like mess with what it's doing. And I'm like, oh, no, I just screw the whole thing. And so I feel both really grateful and sometimes frustrated. And also in awe of it all of it. I think it's it probably could be optimized a little bit more for what it is, you know, I wish the target blood sugar was a little bit lower. I wish it was quicker to correct stuff. So those are my

Scott Benner 1:01:50
Yeah, I think I hope, I hope to say I hope they will be one day, I hope that the like the 110, or whatever they are, I think on the part five is 110. I think maybe control IQs like 112 and a half is I think the target or whatever. Hopefully, hopefully, these companies will just continue to innovate, and to put r&d money into it so that they can go back to the FDA with confidence and say, Hey, listen, I think we could let people choose all the way down to 80 or wherever they want, you know. But I mean, it takes so much time.

Tziporah 1:02:24
Well, for sure. And you know, here's the other reality, which you don't need me to point out to you. But like, when I'm sitting with my endocrine team, you know, they when I'm thinking about the story you told earlier about folks who say, Yeah, you're doing great, you're doing great. I know in my mind's eye, what are all the things that aren't great? When you look at what the technology is making possible, like things look pretty, okay, you know, an ANC of, you know, 6.5 is pretty okay, by most people's standards. That being said, like, my variability is higher than I want it to be. Or sometimes I hang out in the two hundreds for days and don't know why and don't really want to think it's about the hormone things that happen when I get older, or whatever else. Like there are still like things that I do that influence the the effectiveness of the algorithm. And in some ways, like, they're never going to know those things as well as I do. I'm always probably going to think I could do better. But in the meantime, having technology that takes a bunch of that guesswork out is like super helpful, because otherwise it's kind of a full time job on top of my other full time jobs.

Scott Benner 1:03:32
I have to be honest, if when I'm talking to people I do I do my very best not to be judgmental, like not to let my own personal like I don't know, like how to put it exactly like I don't I tried to make snap judgments when people say things like, like, like the person who is talking to you, like, you know, is me, but at the same time, if you put me in my personal life, when i There are times when I hear people say like, oh, the doctor told me I was doing great. And I just believe them in my mind. I think what, like you say, I mean, you're, you're unaware of that a nine a one sees not okay. Like, like, that sounds like a lie to me, you know, and then you start getting into the psychological part of it, which is Look, someone told me what it really means to me when they say someone told me it was okay. And I didn't question any further is I got a pass not to think about this thing that is hard for me to think about. Yeah. And you know, it's sometimes it comes out of their mouth blaming, but I never I never hear it that way. Oh, if that makes sense or not.

Tziporah 1:04:37
But no, it does make sense. You know, I think that like, anxiety thing that you were talking about, I think I probably have that hardwired. Like I'm always thinking about what's diabetes doing in the background, even if I don't think I'm thinking about it. And because that's been true my whole life and because I know like better control is just better in the long run, especially, you know, when I already have some complications. That track in my head is like going all the time. That doesn't always mean though, that I make great choices. Like sometimes I just want to eat ice cream for dinner.

Scott Benner 1:05:15
You understand? Just for real, I made myself a waffle the other day, randomly in the middle of the day.

Tziporah 1:05:23
I mean, why not? It's very lunch waffles.

Scott Benner 1:05:26
I'm gonna tell you something now that I'm embarrassed by. Okay, great. This is a safe space. It's not people are gonna hear this. So if it was safe, I wouldn't get so many emails. My brother takes me to a diner one day, my mom, my mom is goes in. My mom has cancer, right? She's doing she's doing pretty good. But we learned my mom has cancer six months ago or so she has to go have surgery. She's 79 years old. My you know, she's so old. And the cancer is so you know, advanced that my other brother flies in from the middle of the country, like just to drive her to the hospital. Because the three of us are in this car thinking it's a fair shot, Mom's gonna die in this surgery. So we, it's COVID. So we take her to the front door of the hospital and basically, like, just push her through in a wheelchair. And we're like, goodbye. You know, like, it just shoved her and we assume somebody was gonna find her, you know what I mean? So, you know, it was it felt like that. So we spent the morning with her sitting around her place talking, you know, trying to not be like, trying not to say like last rites types of things like you like there's I found myself in the room thinking there are things I want to share with mom in case she dies. And I don't want to say them. Because I don't want you to go in there thinking. I heard what that kid just said, I think he thinks I'm gonna die. You know, like, so you're trying to balance that line. We're all talking. We get her in the hospital. And my brother goes, you guys want to go get some breakfast. And so we just went to a diner and we sat and talked for a really long time. I ordered something and my brother turns to me and goes get the chicken and waffles. And I went what he goes, I don't even care what you want or what you think he goes. Just get the chicken and waffles. And I was like, okay, so I ordered it. It was so good. He was incredibly right. Best waffle I've ever had in my life. I then went on a waffle Bender trying to recreate the waffle in my home. I could not do it. So I went back to the diner. While the 18 year old that was serving me was chatting with me. I looked her in the face and I said go in the back. Use your phone, take a photo of whatever the waffle mix is. Bring it to me. I will give you a $20 bill so so she goes in the bag takes a picture airdrops it to me kids are amazing. Like I love like how well they understand technology. I'm just sitting in my head but just pops up. It's like bah, bah, bah wants to airdrop you and I'm like, Well, this is either unwanted porn or a picture of the waffle mix. So I hit no loss in that. So I hit I hit yes. And there it was. She took a picture of it. I literally I handed her the money she's you don't have to give me that. I was like a promises a promise you take this do something nice with it. I always tell young kids the same thing. I'm like, don't buy drugs with my money. And I and, and then I went online. I'm so embarrassed. I had to order a case of it because it comes from a restaurant supply. Oh, yeah. I spent $40 on waffle mix. I'm now $60 into it. As you can see, it comes to my house. I make it it does not taste the same. And I think oh my god is the syrup. So

Tziporah 1:08:54
I go back, tell me you went back. Yes,

Scott Benner 1:08:56
I did. I'm not giving up now. So I went back to the diner. And I said, Can I just have a little bit of that syrup. And I got some of it. I went home. I made another waffle. I put it on. It was better, but it wasn't exact. And I thought that's not possible. I bought the mix. I have the syrup. I'm whipping the butter. Like what's wrong? And I can't figure it out and I can't figure it out. And then one day I realized it tasted really good because I was sitting there with my brothers. And I'm never gonna recreate that that way. And now I don't want the goddamn waffles and I have all this mix of I don't know what to do with it. I'm gonna start giving it away as gifts. But anyway, that was that the it took me like months. This is not a story that happened over a couple of days. I wasn't in there every day like going alright, now give me this part. It literally took me once months and months to build it up. And then that's what I figured out it did The way those chicken and waffles tasted, had nothing because I then went back and ordered the chicken waffles again and sat there by myself at lunch and ate them. It wasn't the same. Yeah, so I don't know why I told you that. But, you know,

Tziporah 1:10:14
there's you said it was going to be an embarrassing story that's actually really touching

Scott Benner 1:10:18
story but the point about I mean, I was, I mean,

Tziporah 1:10:20
you're stuck with a ton of awfulness. You have no idea. I'll send you some. I should give it away. Online. Like contest of half opened, half consumed waffle mix, is that it

Scott Benner 1:10:35
is really good. And by the way, the syrup did upgraded significantly. But what I figured out was that restaurant syrup is poison. Like, it's not the they're not giving you like maple syrup. They're not good. It's just, I mean, if there's a way to put high fructose corn syrup and something twice, they figured out how to do it. Oh, yeah. And you could only buy it by the gallon, which makes it? I did. I want to say I did not buy a gallon of syrup.

Tziporah 1:11:02
I just, I wouldn't buy a case of gallons. I took

Scott Benner 1:11:05
a tumbler to a restaurant and strong armed like a 19 year old kid and filming it.

Tziporah 1:11:11
It's actually sort of amazing. You haven't gotten arrested in this story.

Scott Benner 1:11:15
I'm delightful while I'm doing it. Yeah. And I'm throwing money around. So you know? No, 20 year old kids gonna be like, saying again, you're gonna give me $20 To do what looks like okay, that's fine, you know? So anyway, and I have not been kicked out of the restaurant. But yeah, I don't know. There's anyway, my mom I should say, zipped through the surgery. I astonishing LEE Well, she had a full hysterectomy, a tumor, the tumor the size of a grapefruit on her ovary. And, and the day after the surgery. I'm on the phone with her because I can't go Syria. I said, Mom, how's the pain? And she goes, Oh, I'm good. And I was like, Oh, they got you all loaded up on stuff. And she goes, I took a Tylenol and ibuprofen and I thought, oh, people are tough, you know, tough lady. Ibuprofen, Tylenol, I mean, cut from her sternum down, and a bunch of stuff removed. She goes to rehab, rehabs herself for a week, goes into another place, pulls herself together over the next month starts chemo. She's five treatments into six chemo treatments right now. And she's, she's well. And that's it. I'm going to when she's done, we're gonna I'm gonna take her to that Diner

Tziporah 1:12:29
for chicken and waffles.

Scott Benner 1:12:30
I don't know if that's what she wants, but that's what I'm getting.

Tziporah 1:12:33
What if they can't even make the waffles because somebody bought all

Scott Benner 1:12:37
that's possible. I went to a restaurant supply house at one point and snuck in looking for the

Tziporah 1:12:48
Chairman, I'm gonna give you that I

Scott Benner 1:12:50
was on a bit of a. I don't know, like, I have no idea Holy Grail. It really was and then the other day Arden's like you want to walk on like I'm completely sick of waffles. I never want a waffle again. So I was making waffles taking one bite of them and throwing them away. Before

Tziporah 1:13:06
you were a waffle connoisseur, I mean, that's the thing. That's what you do. Now when you're fancy. I don't

Scott Benner 1:13:10
I don't know how hard it is to be a waffle connoisseur. I've come to realize after I'm eating them, they're just flour. Anyway, what have we not talked about that you wanted to? Anything?

Tziporah 1:13:26
I mean, probably lots of things. But

Scott Benner 1:13:29
why did we have to do this orally?

Tziporah 1:13:32
Cuz I like have a job both days. I mean, whether I'm working from home or working in one of my offices like I'm, I'm generally like pretty JAM PACKED from as early as 630 or seven all the way through to the evening most days. So

Scott Benner 1:13:48
I am often baffled that people are you able to do this? Yeah, I really am. Like I never asked, but there's the part of me that's like, why are you able to do this at 11 o'clock on a Wednesday?

Tziporah 1:14:04
So I have to tell you, you're the first invitation I got was for nine o'clock and I'm like, Oh, this will be fine. It'll sort of be like the start of the day. And then my one of my workgroups was like, Okay, we need to have a retreat from eight to 10. I'm like, Oh, I've got my recording. I've been waiting to do this. And then you happen to reach out to say, hey, I need to move and I was like, Oh, that's cool. Perfect. Yeah,

Scott Benner 1:14:26
I I took a week off from recording so I could go be with my son. And

Tziporah 1:14:31
as you should. Yeah, I'm going to try to enjoy some waffle moments. More

Scott Benner 1:14:35
fun. Yeah, maybe I should take him for a lawful. There we go. Two more questions. If you don't mind. How short Are you?

Tziporah 1:14:44
Like in real life or on my license?

Scott Benner 1:14:46
I in real life if you don't mind? Like for

Tziporah 1:14:49
nine ish and a half? At No. Three quarters.

Scott Benner 1:14:53
How did you get that baby out of you even?

Tziporah 1:14:56
Oh, yeah, not easily. Just gonna say aid? Not easily.

Scott Benner 1:15:01
That's why you're or other people in your family. Similarly, yeah,

Tziporah 1:15:05
I am not the shortest of my siblings. I'm not the shortest.

Scott Benner 1:15:09
No kidding. Yeah, I have friend people I love who the shortest the three shortest people I've ever met my life. Like she's short, she married a shorter guy. They had a short kid. Like when they're standing next to each other. It's like, it's like watching Tom Cruise act. When they're all sitting next to each other. You can't tell the minute one of them breaks off and goes next to somebody else. You're like, Oh, my goodness, is Are there limitations? Like, does your height hold you back from things?

Tziporah 1:15:39
Not really. No. I mean, it's interesting. I from time to time, I've had people say, How do you reach your dishes and like, I just put them where I can get them. Or I will tell you, you know, I'm in my 40s, I will still climb a grocery store shelf to get something that I can't reach. Rather than ask someone to help me. In my own kitchen, I will use other implements to get things out of cabinets. Like I'll grab a spatula and you know, get the flour from the top shelf or whatever. But mostly my life is set up in a way that's navigable for me for you. And it doesn't occur to me that I'm short until I stand next to someone like oh my gosh, you're short. I'm like, oh, yeah,

Scott Benner 1:16:19
that happens. I think that happens to everybody. I say a lot. Like I'm taller than most of the people I meet in the course of a day. And the minute someone's taller than me, I recognize that I am not tall at all. Yeah, it's interesting. Did you marry or I'm sorry. Are you married? Yeah.

Tziporah 1:16:32
Yeah. But I will tell you too, though. Just one other thing. I do. Look people in the eye a bunch. So I think that's partly why it doesn't really occur to me, you know?

Scott Benner 1:16:42
Oh, do you notice people's double chins more? Think about that, in the course of your day for me.

Tziporah 1:16:50
Well, legit, I'm thinking about my own, which is like a very unfortunate reality. But thank you for that.

Scott Benner 1:16:57
If I had if you gave me $10,000 Right now, I'm putting this out to the people that listen, if you guys were told give me $10,000 and told me I didn't have to use it for any real thing. I'd have my double chin like surgically removed. I

Tziporah 1:17:13
mean, it's it's the waffles.

Scott Benner 1:17:15
It might be not the right or do you think I could just stop the waffles and Miko backwards.

Tziporah 1:17:21
I can't say for sure. I

Scott Benner 1:17:23
just noticed I saw him I saw a person from a camera angle of lower and I recently and I thought oh, they look different from lower up than they do from my eyeline. And that's what made me ask you if you just do see people, I wonder do people look different to you than they do to other people because of the angle?

Tziporah 1:17:45
I mean, we'll never know. No, we won't. But like, most of the time, like I don't like have meetings from standing next to people looking up at them. Otherwise, I've had like a I would have like a serious neck problem. I'll tell us like 540 He

Scott Benner 1:18:00
must be so happy he met you. He must feel like a giant right. Is your daughter daughter shorter?

Tziporah 1:18:08
I mean, she's still for the moment shorter than I am. She'll probably be like five feet.

Scott Benner 1:18:13
Okay. Yeah, I saw Arden last night in a video. She's doing something for school and they had to record themselves dancing so they could. It's not important. And she's in a video with a guy who's probably like six, one and Arden's five, seven. And then there's another girl in the video who's five one and she looks like their child. Yeah, it's really interesting. Yeah, that's real. Yeah, no kidding.

Tziporah 1:18:36
Always front row for the class picture. Always.

Scott Benner 1:18:39
There she is, right there. Did you name your kid something different? And are all your siblings? Do all your siblings have like, more different names as your name means something? There's a lot of questions in there.

Tziporah 1:18:52
Oh, I thought you wanted to say like, did I name her Medtronic or something? I did not. Do you mean like, like, Jewish names?

Scott Benner 1:18:59
Yeah, I mean, do you do like to all your brothers and sisters have names that are more reminiscent of yours that have mine?

Tziporah 1:19:07
Yes. Yeah. So all of my siblings have first and middle names that are from the Old Testament, which is actually kind of interesting. I didn't really grow up in a religious family. But my daughter does not have an Old Testament name.

Scott Benner 1:19:21
Okay. That is interesting. So not particularly religious. But your parents went that route. Yep. Yeah. Did they feel like they had to

Tziporah 1:19:31
really know. I mean, mine is like not a super common name either. And I'm like, Okay, well, I guess being the six out of seven like you run out after a while, but um, you know, it's still pretty unique

Scott Benner 1:19:43
do Jewish faith sometimes, like the first letter has to match somebody else?

Tziporah 1:19:50
Yeah, so all of us are named for somebody. So I'm named after my mom's favorite aunt who didn't have my same English name, but thankfully, I don't have her inclusion. The per Yiddish name was vague Allah which means bird in Yiddish. Okay, so that's how I got this name, which means bird in Hebrew.

Scott Benner 1:20:09
Oh, you listen to this podcast, right? Yeah. How bad is my Yiddish?

Tziporah 1:20:15
I mean, like, what's the scale?

Scott Benner 1:20:16
I don't whip it out often, but like, I know, I know some phrases. Yeah. Yeah. I mean, is it cringe worthy when I say it? Or no,

Tziporah 1:20:23
no, no, no. And I'm also not fluent. I think that's a whole other show. But

Scott Benner 1:20:29
I gotcha. I don't know. I there's some of those words that I find delightful. So actually, the words you just said, for bird, I thought it meant something different.

Tziporah 1:20:42
Well, it can mean that's the thing. It could just mean, the thing about language is that it gets like appropriated for other things, but

Scott Benner 1:20:51
excellent. Yeah, that's interesting. Okay. Your episode's gonna be called Rainbow connection.

Tziporah 1:20:56
I mean, I hoped it would.

Scott Benner 1:20:57
I mean, there's really that's all we had. I mean, that's fine. Yeah. I know. I thought it was like tight. I was like, Oh, excellent. That's gonna happen. That's awesome. All right. Would you hold on for one second for me? I appreciate you doing this. Absolutely. Yeah.

Well, first, I want to thank Sephora for coming on the show and sharing her story and being so Chitty, chatty with me. I had a great time. I also want to thank Ian pen from Medtronic diabetes, and remind you to go to Impend today.com To learn more about that insulin pen that has all that functionality that you want. And let me thank our newest sponsor, athletic greens, makers of ag one, head over now to athletic greens.com. Forward slash juicebox. To get started with ag one. Ag one is a small micro habit with big benefits. It's one thing you can do every single day to take great care of yourself.

Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.