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- [00:00]
A
Friends, we're all back together for the next episode of the Juice Box Podcast. Welcome.
- [00:15]
B
Hi, my name is Naomi. I am from New Jersey and I am a type 1 diabetic diagnosed in 2016 as an adult. One of those lot of people.
- [00:28]
A
If you'd like to hear about diabetes management in easy to take in bits, check out the Small Sips. That's the series on the Juice Box Podcast that listeners are talking about like it's a cheat code. These are perfect little bursts of clarity. One person said, I finally understood things I've heard a hundred times. Short, simple, and somehow exactly what I needed. People say Small Sips feels like someone pulling up a chair, sliding a cup across the table and giving you one clean idea at a time. Nothing overwhelming, no fire hose of information, just steady, helpful nudges that actually stick. People listen in their car, on walks or while they're actually bolusing anytime that they need a quick shot of perspective. And the reviews, they all say the same thing. Small sips makes diabetes make sense. Search for the Juice Box Podcast, Small Sips wherever you get audio. Nothing you hear on the Juice Box Podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your healthcare plan. A huge thanks to my longest sponsor, Omnipod. Check out the Omnipod 5 now with my link omnipod.com juicebox you may be eligible for a free starter kit. A free Omnipod 5 starter kit at my link. Go check it out. Omnipod.com Juicebox terms and conditions apply. Full terms and conditions can be found@ omnipod.com juicebox Today's episode is also sponsored by USMED usmed.com juicebox or call 888-721-1514. US Med is where my daughter gets her diabetes supplies from and you could too. Use the link or number to get your free benefits. Check and get started today with US Med.
- [02:20]
B
Hi, my name is Naomi. I am from New Jersey and I am a type 1 diabetic diagnosed in 2016 as an adult. One of those lot of people that you hear about, that you hear about.
- [02:35]
A
We hear, we hear from a lot of people. With lada, you're almost up to a decade or you hit it already?
- [02:41]
B
Yes. So I'm almost coming up to a decade this summer. Wow. I didn't need insulin originally. When I was first diagnosed, my sugars were pretty well controlled with low carb and exercise. And gradually as the years went on, by year five, I was realizing that my glucose numbers were creeping up even despite a low carb, high exercise diet and a diet of exercise as well. But at that point, I really had to push my endocrinologist for insulin. I felt as though, you know, all of the research that I had done and everything that I had read, you know, told me that being at 140, 150 all the time, like, wasn't really normal. I know it's, you know, within range for many people, but I knew at that point, you know, well, maybe somebody should be offering me insulin at this point. But it wasn't happening. So I just pushed for it and advocated for it. And every time I went said, you know, I think it's time. I think it's time. I want to try it. I think I'll be okay with it. And that, that got me down to, you know, more reasonable range, fasting numbers and things like that.
- [03:51]
A
So, question. When you were diagnosed, originally, they told you you were type two?
- [03:56]
B
Yes, originally. I was diagnosed at first by my regular gp. He noticed that my sugar was high. One time when I went just for an average visit. I had no symptoms, felt nothing, wasn't drinking excessively, wasn't going to the bathroom a lot like you hear with a lot of other people. I'm going to send out your blood for this antibody autoantibody test to just see if you have the antibodies for type 1 diabetes. I was positive for just the GAD one, but he wasn't sure. He said it was borderline and potentially I could have been type 2. He referred me to an endocrinologist, and I'm still with that endocrinologist today. And I really do like her a lot, but she was kind of of the school. It doesn't really matter if you're type one or type two. We're just gonna watch your number. I thought that was a little, you know, odd. I thought, you know. Well, no, shouldn't we know? Because I may eventually need insulin if
- [04:50]
A
I AM A type 1 also, what the heck, right? Why don't we know for sure?
- [04:54]
B
Yeah, to know. I mean, I'm the type. I like to know everything about everything. I research, everything I read, everything. So.
- [05:00]
A
Oh, I don't think you need to be the type to want to know that. That one's. That one's pretty easy. So you. I heard you stumble when you said, I'm still with her. Is that the like. Do you feel like I'm about to judge you for not finding a doctor who didn't misdiagnose you for five years?
- [05:15]
B
I'm Not. I'm not so much worried about you judging me. I'm worried about my own judgment of myself sometimes that I. That I stick with her. I really do like her. And she's been helpful, you know, throughout the years. And, you know, I just realized that the relationship is more of me doing the research and me advocating for myself rather than.
- [05:35]
A
And her having access to a prescription pad.
- [05:38]
B
Yes. And sometimes I feel yet like. Not that I know more than the endocrinologist, but I know a lot at this point. You know, obviously, As a type 1 diabetic, you educate yourself and you're your own best advocate. So, yeah, I always go in there prepared with, well, what about this? And let's try this, and what about this research? And, you know, how old were you
- [05:58]
A
at the original diagnosis with the GP?
- [06:01]
B
I was 47.
- [06:03]
A
So 47 years old. You went to the doctor just because you were going to.
- [06:07]
B
It was my regular yearly physical.
- [06:09]
A
Okay. You showed up that day, being like, I'm 47. I'm doing great. I have no complaints. And you left that office an hour later going, I have diabetes.
- [06:18]
B
No, it was not an hour later. He said, my sugar was high, and, you know, we'll send. We'll do this other blood work and we'll send it out. So it wasn't until, you know, a couple of weeks later that he called, and I was. I remember. You know, I remember the call exactly. I was in a hotel room at, like, my son's college orientation, and he. He said, you know, I think that you have diabetes because you've borderline for this antibody. Your sugar's been elevated to a 1C. So it was kind of a shock because, you know, I was, you know, very good health and fair to say.
- [06:48]
A
You left that appointment. He said, we're gonna send some blood out. You didn't think about it again? You didn't think someone's gonna.
- [06:53]
B
In a million years would I have suspected I had diabetes. Now, I had just come off of this, you know, subsequently to the diagnosis, I had read that it could be triggered by a virus or an infection of some sort. So I had just come off a very, very bad infection for which I was hospitalized. So in. My endocrinologist didn't think necessarily there was that correlation, but in the back of my mind, I thought maybe that's what did trigger it.
- [07:19]
A
So you've obviously done a lot of picking around since then. And so hindsight, is there other autoimmune stuff in your extended family?
- [07:26]
B
Not in my extended family at all. I Have thyroid issue. You know, I'm on. I have. Is it hypothyroidism?
- [07:34]
A
Hypo. Yeah.
- [07:35]
B
Yes. So I'm hypothyroidism. My dad was a type 2 diabetic, but that was really, I believe, diet related and he was overweight and all of that. But no one in my family that I know of was a type 1 diabetic or had any autoimmune issues, so it was such a shock, you know.
- [07:53]
A
No, no, no, I hear you. How long had you had the. The hypothyroidism diagnosis that I've had for about 20 years. Say that's longer, right? Yeah. And nobody else in your family has that?
- [08:06]
B
No, no.
- [08:07]
A
Just lucky, huh?
- [08:08]
B
To my knowledge. Unless, you know, with my grandparents, you don't know. They're not here anymore. You know, I can't ask.
- [08:12]
A
Yeah, yeah, yeah.
- [08:13]
B
But it wasn't something that I was aware of or that my parents talked about my grandparents having.
- [08:17]
A
Gotcha. Okay. Have you always. You described yourself in your note as a perfectionist?
- [08:25]
B
Yes.
- [08:26]
A
Has that always been the case?
- [08:29]
B
You know, I've always been a little bit of sort of an overachiever and, you know, wanting everything to be perfect and in place and organized and me being on top of everything and, you know, that is a tough sell with diabetes because it's hard to be a perfectionist with diabetes because you can't be perfect.
- [08:48]
A
Yeah.
- [08:50]
B
So that. That's tough. So in the. In the beginning and even to this day, I say, you know, I'm not as obsessive about my numbers, but I kind of really still am a little bit. And I check my phone much more often than I think is probably healthy. I'm trying to get my mindset more to the place of, you know, yes, I want to have good numbers and be in range all the time, but at the same time, I also don't want to take years off my life by stressing about the numbers and worrying about the diabetes and checking my numbers so frequently.
- [09:19]
A
That kind of personality trait, like your entire life as a child and a teen in high school too, or more in your 20s.
- [09:29]
B
At that time, I felt that there was less to obsess about or control. Like, I didn't have control issues when I was growing up or anything like that, or wanting to be in control all the time. But with the diabetes, I feel as though it almost got worse because you had this number and you have the technology where you can look at it all the time and you can manage it all the time and you can Micromanage it, you know, with micro dosing and, you know, so I'm sort of in that place where I. I am very on top of it.
- [09:58]
A
Yeah. Let me be a little less obtuse. Okay.
- [10:01]
B
Okay.
- [10:01]
A
Do you have anxiety and did it start when your thyroid diagnosis came?
- [10:07]
B
No, I will say right now, no, I do not have anxiety. I have struggled with anxiety in the past, and I've been in therapy for that and everything, but not in a. Not in a very long time. But I think it has crept back up with the diabetes. I don't think of myself as an anxious person. I think of it as more of, you know, I want to be in. In control of my diabetes. I want to control it rather than have it control me.
- [10:34]
A
Yeah, yeah, yeah. I also want to tell people who are listening around the country and around the world that you talk faster. You probably seem anxious to them, but you're just from Jersey, so.
- [10:44]
B
From New York originally. I just talk very fast, so I will try to slow that down.
- [10:49]
A
No, no, you're doing fine. I'm slowing myself down. So the two of us aren't doing it together because I. You and I are probably very close to each other physically. Yeah. So if I get going, you and I will just be going at a speed that no one else will be able to listen to. So.
- [11:04]
B
Yes. And I especially find I talk faster when I am very interested in the topic, and I'm very invested in the topic. I tend to get a little more excited about it.
- [11:15]
A
Yeah, sure. Hey, listen, it took me. It took me the better part of, like, six years making this podcast to learn how to slow myself down, so.
- [11:21]
B
Wow.
- [11:21]
A
So what I was going to say is that, like, anxiety can be a side effect of, like, a mistreated thyroid. And so my last question about your thyroid is, is do you know where your TSH level sits?
- [11:32]
B
I have it in my blood work. I don't know it off the top of my head, but I'm doing fine. According to my endocrinologist, I am on medication for it, but I'm not. It's not anything where she's had to adjust my medication because I'm too high or too low. I'm within the normal range. I do know that I bring this
- [11:49]
A
up because the normal range is pretty wide. And a really a well thought out endo around thyroid will. Will manage your TSH under a 2.1. So do you have any other hypothyroid symptoms? Are you tired a lot? Can't get rested, Hair falls out, brittle nails Trying to think anything like that.
- [12:09]
B
Fatigue, you know, I have some of that, but that's due to my. My breast cancer diagnosis.
- [12:17]
A
Yeah, well, listen, I. I'm not a doctor. What I'm going to tell you is if you dig around in that blood work at some point and realize that your TSH is like three and a half and she's telling you it's good, then, then.
- [12:28]
B
No, I just found it. I pulled it up in my, you know, in the Apple health app. You can, if you connected to all of your health apps and your. My charts, you can just punch in TSH in the search bar. And it just came up. So I am 1.3.
- [12:43]
A
Oh, that's beautiful. Okay, good. You are a perfectionist. You have your health app attached to you. Look at you. You're proving. You're proving yourself right the whole way.
- [12:50]
B
I didn't do that myself. My son had to set that up for me.
- [12:52]
A
So tell me about the cancer.
- [12:54]
B
Okay, so I was diagnosed with the breast cancer last summer also, you know, another shock because I think of myself as such a healthy person. But, you know, it can happen. It happens to one in eight women. So again, regular mammogram, I didn't feel anything. It wasn't the mammogram that picked it up. It was the ultrasound that picked it up. They did a biopsy. Luckily, I was stage one. It had not spread to my lymph nodes, so I am very lucky. However, anyone with breast cancer knows they send your tumor out. When they do the surgery, they send it out to some lab in California and they do something called an Oncotype DX score. And that is a score that tells you whether or not you will benefit from chemotherapy. My score came back very high, so they did recommend chemotherapy. So I did go through the whole treatment process of chemotherapy and radiation, and I finished radiation in February.
- [13:53]
A
Congratulations.
- [13:53]
B
And now. Thank you. Thank you. So. And now I'm just on the aromatase inhibitor, which is supposed to tamp down your estrogen. I had the type of breast cancer, er, positive. My cancer grew in estrogen, so they tried to block that as much as possible going forward. And I think that does cause some, you know, that causes some fatigue and all that. Also, just basically what my body has been through, you know, over the last, you know, eight months or so.
- [14:20]
A
Two things. First of all, my anxiety grows in. Estrogen comes from my wife and my daughter.
- [14:25]
B
That'll do it.
- [14:26]
A
Yeah, yeah. And the. The second thing is you said something offhandedly a second ago that I want to double Back to, You know, I think of myself as a healthy person. And I think I'd like to point out to people that just because your. Your thyroid went kablooey and so did your pancreas and. And you had breast cancer, I don't know that. That doesn't mean you're not a healthy person. Like, I wonder what everyone's expectation is about the process of life to death and what's supposed to, like, quotes, finger quotes supposed to happen to you through that entire process. I think about that because I'm 54. So what am I? I'm a little older than you, right?
- [15:07]
B
You're a little younger. I'm seven.
- [15:09]
A
Oh, I'm sorry. I did the math wrong. Thank you. Finally, I'm younger.
- [15:11]
B
You're a baby.
- [15:13]
A
So there you are. You're 57. I'm 54. My son said to me, I don't know, a year ago, like, how many things have been wrong with you? He told me, like, as I. As I. So, like, for instance, and I had to have my right knee cleaned out, oddly. My. The big toe on my right foot stopped bending. And, like, the guy had to go in there and, like, I don't know what he found that he cleaned it up a little bit, did some micro needling and all this stuff. And it's been like a couple of years now. And I would tell you that it's odd that I'm having this conversation now because I'm not actually wearing shoes right now, but I couldn't. I couldn't, you know, can you make a fist with your toes? Right. I couldn't do that with my right toe for like the first 18, 24 months after the surgery, but I can now. Like, it was a good idea to go get the surgery. It ended up being a great thing. Blah, blah, blah. Right. I've had a carpal tunnel surgery because I injured my hand. I've, you know, I use a GLP medication. I had to have, like, something like, you know, throughout my life.
- [16:16]
B
Normal, Normal aging thing.
- [16:18]
A
I. Yeah, I had a. I had a. My shoulders are, like. I had a motorcycle accident. I was a kid. I never got it fixed. I had to have, like, rotator cuff surgery, like, stuff like that. And my son looks at that and goes, holy hell, man. He's breaking all over the place, you know?
- [16:33]
B
Yes, yes.
- [16:34]
A
What I see is, I see that, like, you're an expectation of getting to your grave without something like this going wrong in your meat sack that is rotting it in front of you every day long. I Just look at it as trying to stay ahead of Father Time. And because if somebody said to me, are you healthy? I would say, yes. You've probably heard me talk about US Med and how simple it is to reorder with US Med using their email system. But did you know that if you don't see the email and you're set up for this, you have to set it up. They don't just randomly call you. But I'm set up to be called if I don't respond to the email because I don't trust myself 100%. So one time I didn't respond to the email and the phone rings at the house, it's like, ring. You know how it works. And I picked it up, I was like, hello. And it was just the recording. It was like, US Med doesn't actually sound like that, but you know what I'm saying? It said, hey, you're. I don't remember exactly what it says, but it's basically like, hey, your order's ready. You want us to send it? Push this button if you want us to send it. Or if you'd like to wait. I think it lets you put it off like a couple of weeks or push this button for that. That's pretty much it. I push the button to send it and a few days later box right at my door. That's it. Usmed.com juicebox or call 888-721-1514. Get your free benefits checked now and get started with usmed Dexcom Omnipod Tandem Freestyle. They've got all your favorites, even that new eyelet pump. Check them out now@usmed.com juicebox or by calling 888-721-1514. There are links in the show notes of your podcast player and links@juiceboxpodcast.com to USMED and all of the sponsors. This episode is brought to you by Omnipod. Would you ever buy a car without test driving it first? That's a big risk to take on a pretty large investment. You wouldn't do that, right? So why would you do it? When it comes to choosing an insulin pump, most pumps come with a four year lock in period through the DME channel and you don't even get to try it first. But not Omnipod 5. Omnipod 5 is available exclusively through the pharmacy, which means it doesn't come with a typical four year DME lock in period. Plus you can get started with a free 30 day trial to be sure it's the right choice for you or your family. My daughter has been wearing an Omnipod every day for 17 years. Are you ready to give Omnipod5 a try? Request your free starter kit today at my link omnipod.com Juicebox terms and conditions apply. Eligibility may vary. Full terms and conditions can be found@ omnipod.com juicebox find my link in the show Notes of this podcast player or@juiceboxpodcast.com.
- [19:20]
B
you know, I'm glad you said that because that's the perspective I'm trying to get to because I still do feel extremely healthy. I mean, I work out all the time. I'm a long distance runner and I'm still running, you know, and I ran through treatment and I, part of me, 50% of me feels that I'm very healthy. I eat well, obviously, because I watch what I eat because of the diabetes, you know, so I have that. But then I also have the 50% of me that's like, oh my gosh, got the thyroid issue. I have osteopenia, you know, which many women my age, you know, get. I have the breast cancer, I have diabetes and I'm falling apart. I'm breaking down. So I go back and forth. I am, I'm still feeling very healthy, but I do worry about the things that are happening to my body. But many people live very long, fruitful lives, obviously with type 1 diabetes and having survived breast cancer. So.
- [20:14]
A
Yeah. Well, I'm glad you're looking. I understand your trepidation around, like making the proclamation, but at the same time I like that you're searching for it. I also did not mean to rhyme trepidation and proclamation. I very much apologize. I apologize to everybody for that, for a Monday morning.
- [20:29]
B
But I also wanted to mention that with the diagnosis of the breast cancer, it really helped me to sort of be a little less obsessive with the diabetes numbers because I realized that, you know, as much effort as I put into managing my diabetes, here came this thing, you know, along that was so much bigger and that really was life threatening and that could, could kill me, you know, and so it really made, you know, sometimes when I hear people talk about diabetes like it's the worst possible thing that ever happened to them. You know, now I have this perspective of like, God, if I only just had diabetes, that would be awesome. You know, so it is interesting how things happen in life and changes your perspective because you can't you really. And if you are in control or have some, you know, good range of control with your glucose numbers you can live well into your 80s and 90s, you know.
- [21:25]
A
Yeah, there should be no issue with that. Well, okay, so you got to the point where you talked that doctor into believing you needed insulin. And are you, like, where are you in the, like, the lot of chain of command? Are you, like, in full need of insulin? Are you taking just.
- [21:41]
B
Oh, yeah, yeah. No, I'm in full need now. In the beginning, I started with pens. You know, the first couple of years I used pens. And then I, As I educated myself more, I realized, well, there's more I can be doing. You know, why don't. Why can't I give myself 0.5 unit of insulin as opposed to a full unit? And then I started, you know, researching pumps and exploring the pumps and. And I knew, just given my lifestyle and activity level, I knew that I didn't want one with a tube, although they're very successful for so many people. But I did go with the Omnipod. And, you know, I don't, I don't take as much insulin as some other people because I do tend to eat a low carb diet. But there are times where, you know, I'm out to eat or wherever if I want dessert, you know, and I definitely, you know.
- [22:23]
A
Yeah.
- [22:23]
B
But I typically don't have more than 30 units a day.
- [22:27]
A
Okay. Yeah.
- [22:28]
B
I mean, sometimes it's as low as, you know, 10 units if I'm eating, you know, very low carb that day.
- [22:32]
A
How does the running affect your insulin needs?
- [22:35]
B
The running is tricky because, you know, again, with diabetes, it's. It's all about sort of decisions and management around, you know. Okay, well, when am I going to do my run? Like, I typically want to do it in the morning before I've eaten, but sometimes when I wake up in the morning, I have foot to floor syndrome or dawn phenomenon or whatever you call it that. That makes me go up. So I tend to take it. I might take a unit or two when I wake up to just keep myself, you know, under 140. But then sometimes, you know, when I go out for the run, I tend to drop lower when I run. So I want to be, you know, I'm always looking again at the number to make sure. Okay, well, I'd love to be around 120, 130 when I start to go out for a run. But, you know, sometimes I'm not. Sometimes I'm sitting at 90 and then I drink some juice or I eat something. I always make sure that I have to have. I have a belt with me that I Always have snacks. I have, you know, the running pants or the running shorts, where the pockets. So I can always carry a juice box, you know. But again, during a run, I do like to check my numbers because I don't, you know, I don't want to. One time, I did go very, very low during a run. I just got distracted. I wasn't checking it, and I started to get that numb, tingly feeling around your mouth that you get when you go very low.
- [23:48]
A
That's usually really low, right?
- [23:50]
B
Yeah. So then I looked and I was like 45 or something, and I'm like, oh, my God, I can't believe I usually, I'm, you know, a little more on top of that when I'm running. So I do check it when I run because I like to make sure I'm not going low during a run. It's funny, I used to go high when I ran, and I think in the beginning it was like my liver dumping glucose or something. I didn't know what it was. But from what I've read, you know, it could have been that. But now all the time, I tend to skew lower, so I like to try to eat something before I go or make sure I have food with me so that I can maintain, you know, a certain level. But there's. I don't know if you. There's a woman I follow. I follow her on Instagram and Tick Tock, and she's. She's a runner, and she's always like, you know, saying what her numbers are during a run. And she. I actually saw her run, and she was running in the New York City Marathon, and she was running for breakthrough T1D. And, you know, it's just inspirational that she's able to do it, you know, with. But. So you can. You can do it well. You're doing it careful. Like. Yeah, in marathons, when you have, like, gels and goos and things like that. I don't want to have that because I don't want to have to take insulin while I'm running, but I can take a little bit of it if I'm. If I'm on the lower side, you know, I can have a little bit of it. I can have like a sip or two of Gatorade.
- [25:07]
A
Yeah, no, I think. I mean, I've interviewed a handful of people who've done marathons. They always want to come on the podcast. And I. I always feel bad because my. My inclination is always to ask them, like, why are you running so much? I know, but.
- [25:19]
B
But no, again, it's like every marathon, I say, okay, this is definitely the Last one. I'm 57. Like, I cannot do this anymore. My body. But my kids are running it this year, and I wanted, you know, just that, you know, I'm so excited to do it with them and to have that opportunity. So I want to go out on a high note running it with them.
- [25:39]
A
There was a woman on recently. Do you listen to the podcast?
- [25:43]
B
Yes.
- [25:43]
A
Okay.
- [25:44]
B
Not. Not everyone, but, you know. Well, it wasn't Addie, was it?
- [25:48]
A
Let me look.
- [25:48]
B
There's an Addie Taylor on. No, she's the runner that I follow.
- [25:53]
A
I don't know why I can't seem to hook up with her, actually, because I think, oh, she's.
- [25:57]
B
She's very fast, too. She's. I mean, she's a lot younger than I am, but I think she runs like an 8, 8:30 pace. And, you know, I'm an old lady. I'm doing the old lady pace.
- [26:05]
A
Well. Yeah. Oh, episode 1731. Okay, so let's see. Diagnosed 49 years ago, Linda shares her philosophy on borrowed time and her incredible feat of running in seven marathons on seven continents in seven days.
- [26:19]
B
Oh, that's in seven days.
- [26:20]
A
And she did it three separate times.
- [26:22]
B
Okay, what episode is that? 1731.
- [26:25]
A
1731. As you were talking, I thought, oh, I think Naomi would really like that. Yeah.
- [26:29]
B
No, now that is impressive. That is impressive. I mean, I'm a runner, but I'm not in that category of running because a lot of women wanted. Or a lot of people in general. Runners want to run the world majors or they want to run a marathon in every continent. But to do it in that short amount of time, I mean, I'm lucky if I can do one a year, you know?
- [26:48]
A
Yeah. I don't. Listen, I jogged across the parking lot at the shop right. The other day, and that was enough. I was good.
- [26:54]
B
Hey, that's something.
- [26:55]
A
Yeah. I was like, oh, let me get out of the way.
- [26:57]
B
You know, Scott, you got to start somewhere.
- [26:58]
A
Well, I started and stopped at the other side of the driveway. You know, I don't. When. When you're walking across the. May I share a pet peeve. When you're walking from your car to the grocery store, please. First of all, let's not zigzag. Let's not go diagonally across where people are driving. And if your ass is in the way, hustle a little bit. Yeah. You know what I mean? Like, don't look up. You don't look up. Everybody and go, ah, I see that I've walked in front of your car. You're all gonna have to. I. I just try to. I just try to pick up the pace a little bit.
- [27:28]
B
Yeah.
- [27:29]
A
Also, may I share?
- [27:30]
B
Well, Scott, I'll give you a suggestion.
- [27:32]
A
Just park.
- [27:32]
B
Park further away from the entrance, and then you get more steps.
- [27:37]
A
I'm not out of my mind, Naomi. No, I. Actually. Boy, I'll tell you what I was. Sorry. My brother is in Wisconsin texting. It's still snowing three days later is what he just sent me.
- [27:51]
B
You know, I'm done with it. I'm over it. I'm in the northeast, too, so we don't have snow right now, but it's chilly and cold.
- [27:57]
A
And why did it start raining again? Like, horrible.
- [28:00]
B
My. My son just ran the. My younger son ran the Napa Marathon. And I was out there, and I was just thinking, like, why don't I live out here? This is insane.
- [28:10]
A
Okay, beautiful. We'll get to that in a half a second. I just want to share with you. Like, I'm not sure if I'm mentally ill or I'm youthful, but I was at. I was at the grocery store recently. I can't believe I'm just gonna talk about the grocery store completely. But there were. There just weren't many people, and it was a little later at night, and I would, like, kind of speed up a little bit and sort of jump up in the air and hold my body weight up on my cart and let the cart take me down the aisle.
- [28:36]
B
Oh, you are definitely youthful then.
- [28:40]
A
And I'm like, oh. And I did it. And I was like, that was awesome. So I do it more lately, like, when no one's in the aisle, I want to be clear. Not when people are in the aisle, but when the aisle's clear. Right. And I always feel like this is, like, this secret thing I'm doing that nobody knows about. And then I realized it hit me one day. There are cameras all over that place. Someone stairs going, what is this person doing?
- [29:02]
B
Yes. And you have to be careful, right, because you've had knee surgery.
- [29:06]
A
I'll be fine. But, like. But I. Honestly, as I'm doing it, I thought it actually, it occurred to me later because I went out in the parking lot. There's this little dip in the parking lot. Like, you kind of go down a slight hill. And I'm like, why am I walking across the parking lot when I could ride the cart down here when I could be. So I did that, and then I Got all. I packed up and everything and got my car to leave and I actually stopped for a second and thought, huh, I Wonder how many 54 year old people would do this. And that's when it hit me. I was like, is this a positive thing about me or is there something wrong with me?
- [29:42]
B
Probably a little of both.
- [29:44]
A
Yeah. Right.
- [29:46]
B
But I love it because I am especially, I mean, especially I was always like this. But more so after a cancer diagnosis. You have to live life. You have to embrace every moment and find the joy where you can.
- [29:59]
A
Yeah.
- [30:00]
B
So why not do that? Why not?
- [30:02]
A
My mom passed away in her 80s from cancer. And it taught me a lot about the idea of like waiting till the end to do stuff. Also, as you bring it up, like, why are you not, why don't you move to California? Why don't I. I'm trying so hard to get my wife to go like south, like to get it. Because. Yeah, because it's terrible here.
- [30:21]
B
I know.
- [30:21]
A
Or. And you have context for this. I, I said okay to, I'm doing this talk at Hofstra and I gotta drive out on the island like on a Wednesday afternoon. And I'm just like, the whole time I'm like, why did I say yes to that?
- [30:34]
B
Not fun. Not fun. Although people say the traffic in, in outside, you know, San Fran area is bad too, but yeah, in, in the metropolitan area.
- [30:42]
A
Yeah, but don't you think the weather would like, stabilize that feeling for you?
- [30:47]
B
I do. I say that to my husband all the time. You know, why don't we do this? But you know, our kids are in New York. We want to be close to them. He said, you think Jersey is expensive? California is.
- [30:56]
A
Yeah, but I, I'm, listen, I'm looking like, I look at Tennessee. First of all, Tennessee does not have income tax. That's a, that's a thing. And secondly, people from Tennessee are probably like, please stay where you are, leave us alone.
- [31:11]
B
But I, but I doubt that.
- [31:12]
A
But like 45, I'm looking like in an hour radius, like around Nashville, for example, property is just not nearly as expensive as it is here.
- [31:22]
B
Right.
- [31:22]
A
You know, there's no way.
- [31:23]
B
The property tax is a lot lower.
- [31:25]
A
You have no idea. I saw a house the other day and I don't know what the house cost. 3, $400,000. The property taxes were like $1500 a year.
- [31:35]
B
It's crazy. My. Someone that I worked with, that I taught with for many years, she moved down to, she retired in New Jersey and moved down to Charleston. That area and her taxes Are. I think she pays something like.
- [31:49]
A
Yeah, yeah. If I ask people to tell you what you pay. If you tell you what you pay. No, no, people, they pass out.
- [31:56]
B
Don't do that. Don't do that to people. Exactly.
- [31:58]
A
Yeah.
- [31:58]
B
They'd pass down Jersey, New York metropolitan area. It's really outrageous. But yet, you know, near the Jersey shore, I'm near New York City, so I like those things.
- [32:07]
A
Yeah, I like them too, but I don't actually do any of those things. Although my kid did go to the, the art museum the other day and I did think, okay, well that's a good part about being here.
- [32:15]
B
Yes, yes, exactly.
- [32:17]
A
But anyway, okay, I want to talk about your, your diabetes care and your, you know, your assertion that you're, you know, very focused but found a little more leniency for yourself. So where did all that come from? Obviously it's not coming from your endocrinologist. You did your own research. What did you go out and learn? How did learning that form and shape how you wanted to take care of yourself?
- [32:40]
B
Well, I do like to be on top of everything that's going on with my health, you know, and so I knew that I wasn't going to be a pass diabetic patient. I wanted to do everything within reason that I could do to not have non diabetic numbers, but to be within a healthy. Do your best for a diabetic. Right. So I started just, you know, following people on Instagram and you know, hearing about different, like book recommendations. Of course, you know, I read, you know, healthy kick ass Lada and I read Think like a pancreas. I actually had to read that like many people do like two or three times because it, it was very technical. And in the beginning I didn't have the vocabulary and I didn't really understand it until I started using insulin myself and became familiar with, you know, I was never even taught the word bolus. I didn't know what my diabetes educator never used that word. So when that kept coming up, I kept thinking, what is this bolus thing that everyone is talking about? So I had to learn all of this. And the more I learned, the more I wanted to know and you know, the latest research that's happening and you know, obviously learning about islet cell transplants and you know, looking at clinical trials and things like that. So I really wanted to put myself in a position of knowledge so that I would be able to. I realized early on that it wasn't going to be my endocrinologist. Like the difference between diabetes and cancer is. With cancer, I let my oncologist direct everything. You know, she's the expert. This is cancer. This is a big deal. Whatever she tells me to do, I do with the endocrinologist. I learned early on that, you know, I might know a little bit more than she does when it comes to, you know, dosing or the limits and the benefits of different types of pumps and things like that. I realized that early on, so I wanted to make sure that I educated myself and read everything that I could read. And, you know, following certain doctors on. On Twitter that are diabetes experts, you
- [34:44]
A
think your endo doesn't know, or do you that the. The way that the visits are set up doesn't allow for long conversation or.
- [34:54]
B
I think it's more that. That you're in and out in such a short amount of time. And she does defer to the diabetes educator in her office. More so because I think that I don't know, you know, if it's her area of expertise or not. But I. I see her referring me to, you know, oh, that's a question for the diabetes educator. Or ask the diabetes educator that. Or we'll have her look at your numbers and, you know, things if necessary, but. But they're never the ones to tweak things. I'm always the one to tweak things. Like, I adjust my IC ratio, you
- [35:26]
A
know, does your educator have that knowledge? Do they seem more knowledgeable to. Than the endo to you, or.
- [35:32]
B
Yes, I haven't. I kind of stopped going because I feel like I'm at the point now where I do know. I certainly know plenty enough to manage myself. You know, I don't know. It's hard to say. Scott. In the beginning, I don't think I got the best education from the diabetes educator. I was told to take a few units of insulin before meals, but I. She didn't go into depth about insulin to carb ratio or count the carbs. And I. I literally just started taking three units of insulin with every meal, regardless of what I was eating. And then I realized, wait, I'm dropping, like, really low. Like, what's. And I called her, and she said, well, you have to. You know, it's based on the number of carbs you eat. And maybe. You know what? To be fair, it is possible that she did go over that with me, and I was too overwhelmed at the initial appointment to process it. So I don't want to completely throw her under the bus. It could have been my right.
- [36:24]
A
Are you. Are you comfortable? Partially. Throwing her under the bus. Does it sound like a thing you would do, like here that you have to count your carbs to measure your insulin and that you would ignore that?
- [36:34]
B
Yeah, I don't know. And that's, that's why I don't really go to her anymore. Because now I'm. Now I know enough where I can, you know. Okay, maybe I'm really not a 1 to 15 ratio anymore. Let me try going down to 1 to 12, you know, see what that does. And I really like to. I remember one podcast you talked about your daughter's management and correcting if she went above 120. And at the time I was still early on, I thought, oh my God, I would love to be at 120. Like, why would you correct them? But now, of course, I'll do like a micro correct, you know, a little micro dose correction at that. Because I want to stay under, you know. Yeah, I just, you know, so I'm a lot better at management.
- [37:10]
A
Are you using a manual pump? Like are using Omnipod Dash?
- [37:13]
B
I use. No, I'm using Omnipod 5. I use it in auto mode because Jenny said to do that.
- [37:18]
A
Wait, manual?
- [37:20]
B
No, auto.
- [37:20]
A
You're letting it make its decisions.
- [37:22]
B
Yes, yes. But it doesn't. It doesn't give me that much. I think because I don't use that much insulin like throughout every day. It doesn't give me that much basil.
- [37:31]
A
Okay.
- [37:31]
B
You know, I'm mostly bolusing for it, but like, just for fun, I'm looking what I am right now, like I'm at 94, which is great, but I still have like 1.5 units in me from breakfast. So that's why I do like to manage it because I still have 1.5 units on board.
- [37:48]
A
You want to pay?
- [37:49]
B
I don't want to go low, so I check it and you know, I'll have whatever.
- [37:52]
A
Yeah. And you're. The way you eat now is not different than the way you ate before diabetes or it is.
- [37:57]
B
No, no, it's definitely different. It's definitely different. But it took me a long time to get there because I was a big pasta bread person. And I still, I do love that stuff, but I don't. I definitely hardly ever eat that stuff. Only because for me, once in a while, if I'm at a restaurant, maybe I'll order pasta. But for me, it's just harder to dose for it because if you don't know the exact number of carbs, as you know, you know, it's just a little trickier. So I sometimes will do it. Like, I'll sometimes say, screw it. I'm just getting whatever I want. And I'm gonna get the cake too, for dessert, you know, and I'll estimate the number of units or if I'm at a Mexican restaurant or something, you know.
- [38:35]
A
Yeah.
- [38:35]
B
And then I end up with, like, taking 20, 25 units for the meal, and I'm still, like, either going low or high. And so to me, it's almost not worth the trouble because it sends me into a little bit of, like, an emotional. I don't like how I feel emotionally because I'm like, oh, God, you know, I didn't get it right or something like that. So it's almost easier for me to stick to the things I know, you know, like, always get like, yeah, Naomi,
- [39:01]
A
you beat yourself up about it. If it doesn't go well. Even at your age, you've been around a while. You don't know.
- [39:07]
B
Yeah, no, I, I, I'm experienced with it. And I know that it's not, I know that sometimes it is a guessing game, but I think, you know, there are times where, okay, you know, pizza, you're going to do an extended bolus, and I do the extended bolus. And sometimes it works and sometimes it doesn't work. So then I'm like, oh, it's just easier not to eat the pizza, you know?
- [39:27]
A
Yeah, I understand. I, I just wondered, like, because you're, you know, at your age, I thought maybe there'd be some more, I don't know, grace built in.
- [39:34]
B
Yeah. Yeah. No, well, that's, that's the goal. I mean, I'm trying to. Every day I'm trying to, like, yeah, like, so some days, like, I know my range. I do a 70 to 140 range. I know that I'm not going to be in 100% range, like, every day, all the time. Yeah, you know, I would love to, but I don't. I used to beat myself up if I was at, like, 90% in range, and now I don't do that. At least Now I'm like, 90% of range is awesome. You go, girl.
- [40:01]
A
You know, how do you beat yourself up? Is it like, is it unpleasant self talk? Is it quietly in your mind?
- [40:07]
B
Well, it's a lot of, it's actually, for me, it's more like, oh, God, you know, I'm so educated about this. Why didn't I get that dosing right? And then it's also, even though I know this is an irrational fear, I worry about long term. Side effects from spiking too high. Even though rationally I know that that is not going to affect my life unless I'm high, you know, above 200 all the time, which is such a rarity, you know, so as much self talk as I do to, that's negative. I'm trying to do a lot more self talk. That's. Hey, listen, sometimes you hit it and sometimes you don't and it's okay. Yeah, I'm not going to have long term side effects, you know, because I spiked to 251day for an hour.
- [40:51]
A
My journey. I got it. I just, I, I tried so hard to find a word that wasn't journey, by the way, just now. But, but I guess my personal journey through all this from, you know, Arden being two and newly diagnosed to her being, you know, this summer will be 22, so Arn's gonna have diabetes for 20 years in July.
- [41:12]
B
And, and how's she doing with it?
- [41:14]
A
You know, really well.
- [41:16]
B
And she manages herself now?
- [41:18]
A
Yeah, Yeah, I mean, I'd say like 98%. Like, there's times, like I, you know, there's times I'll. I got a text the other day while she was running around trying to get out the door for class and she's. I just got a text and it just said, please come fill a pod for me. And I was like, okay, like, stuff like that or like once in a while, like she, when she goes out and spends the night somewhere else, she has this little like, bag she takes with her with all of her stuff in case she needs something. She's like, I need you to pack my bag or something.
- [41:48]
B
Yes.
- [41:48]
A
My point is that from. It's been, it's been a ride, you know what I mean? And I don't think, I don't think it's over yet.
- [41:56]
B
But yeah, from, like, it's exhausting. It's the fatigue of the constant decision making really, you know, cannot be understated.
- [42:04]
A
I don't think I have to tell you. I mean, I just, I had some thoughts the other day about that I'll share as I'm going through this. But like, you know, from when, from 2 years old, you're like the abject horror and shock, right? And then they'll like, oh God, I'm gonna kill her. Like that thing. Then the recognition that, like, I don't know what's going on. Like, I say to people all the time, like, I didn't have a podcast to listen to. Like, I didn't know what was. Yeah, I didn't know what was going on. Right. And then you're looking at the higher A1C's, eights, nines. You look at the doctor, you realize, you know, I don't think they're going to be helpful, you know, so then you got to figure out on your own, you know, for me, figuring out on your own. I don't know what it says about me, but I didn't go exterior of this house to figure it out. I, I, to like, you know, experimenting with things, figuring stuff out. Luckily, a CGM came, helped me along. Getting onto a pump was nice, but like, not, not exactly like, you know, a big shift to the, the care. It was more about the way you care for it. And then she starts to get older and has every, you know, concern issue that you can imagine, you know, trying to manage. And like, all the stuff that comes with growing and getting older and being
- [43:18]
B
a teenager, being a young girl, son
- [43:19]
A
really, or father, daughter, relationships, like the whole thing. She gets hypothyroidism at some point. That adds to the problem all the way up to, you know, in the last couple of years, she's really developed like, an aversion to needles. And so like, like all that stuff, like everything from there to here and all that in between.
- [43:38]
B
Yeah.
- [43:39]
A
And thinking you're doing well personally when you're not not and not realizing it. So.
- [43:46]
B
Right.
- [43:46]
A
I mentioned earlier, like, you know, like a couple of my medical things, but, like, one of them is that I use a GLP med now. I probably have for nearly three years. Right. And I've lost about, I think at my, at my biggest number, I lost about £70. And I seem to have kind of like gone back to about 65. Like, it seems to be where my body is sitting, for lack of a better way of saying it. I never thought of myself as a heavy person. I don't really know another way to explain that. And even so much so is that when I started losing weight, I think I had lost my first 15 pounds. My son was living in Atlanta at the time for his first adult job, and we went to visit him and I remember walking in the door of his apartment and just being like, I can't wait for him to look at me and go, oh my God, my dad's lost weight. And after like an hour or so, realizing this was not happening, and I, and I said to him, I'm like, I'm like, maybe this is just a boy thing. I'm like, how am I looking?
- [44:42]
B
Have you noticed anything?
- [44:43]
A
Yeah, yeah. Like, it Now's a good time to say that I look like I've lost weight. And he goes, oh, I have you. And then we had, like, a real conversation, and he said, I don't think of you as a fat person.
- [44:53]
B
He said, oh, interesting.
- [44:55]
A
Yeah. And then I looked back at some pictures over, you know, time and realized that I was not a person jumping in front of cameras a lot. And then my wife pulled up a photo of us, I think, at my son's, like, senior day baseball game in college. And I am so fat in that picture, probably.
- [45:17]
B
Yeah.
- [45:17]
A
I had no idea. And I haven't gotten the nerve up yet to ask my wife, and I hope Arden never hears this one, but I haven't gotten the nerve up yet to ask my wife. How much of what happened to us do you think is the stress from Arden's diagnosis?
- [45:35]
B
Yeah, yeah.
- [45:36]
A
And how much of it was just how we are or what we are, whatever.
- [45:40]
B
Right, right. And just lifestyle or what you eat and things like that, but sleeping, I think. Right. The diabetes. And I. One thing I do want to say is it is hard enough managing this disease as an adult, managing myself. I give so much credit to all the parents out there. I cannot even imagine, you know, I'm checking. Getting up in the middle of the night or my alarm goes off in the middle of the night. I cannot imagine, you know, having that responsibility of. I give you so much credit for doing that, you know, for so many years. And I do think, like, lack of sleep, worrying about that, the decision, fatigue and all of that and the stress, I'm sure that it has an impact in some way. I mean, you know, it probably impacts different people in different ways, but I think you had her on what. What's her name? Bain's mom?
- [46:28]
A
Yeah. Marley.
- [46:29]
B
I love her. Love them. Yeah, I love them. And, like, first of all, the fact that, you know, she puts it all out there, not only does it educate in the same way that you have done, I mean, it is educating so many people and teaching so many parents, you know, what to do, how to live like this, and, you know, normalizing it to some extent, but. But what she goes through, and with a little baby toddler like that and what you went through and all parents who have, you know, type one kids, it is. Cannot be easy, you know, And I'm
- [46:59]
A
gonna have to talk about this somewhere in. More.
- [47:01]
B
In more like traumatic stress like that. It sounds like you're coming out of it now.
- [47:05]
A
I swear to you. Like, I just. I looked at that photo and I thought that can't be me. And then I realized, like, that's probably how I was a large part of the time. And I swear to you, if you would have come up to me and said, said, hey, Scott, tell me. You know, be honest and tell me about your weight right now, I would have said something like, yeah, I should probably lose 20 pounds. And if you said, are you fat? I would have said, no, no, I'm just. Like, I just need. I. I didn't. Like, you can't see it.
- [47:34]
B
Did you feel unhealthy? Did you feel.
- [47:36]
A
Well, yeah, but you make excuses for everything, right? You know, like, I had. What's that. I had the plantar fasciitis, right? Really bad. Like, terrible. And you think, like, oh, what's wrong with my heel? And now I realize, like, what's wrong with my heel is that I was carrying around £70. Yeah, yeah, yeah. But I. At the time, I didn't think about that. I wonder how much of my knee having to get cleaned out was that all that other stuff? And yes, my back hurt like crazy all the time. My lower back was. And I just said, oh, I've. My back's always hurt. And, you know, like, just all these different things, and I don't know. And then, you know, it's funny, I think that there's also times that my weight wasn't as. Whatever it was when I saw that photo. In those times, you're probably a little more active. Those are probably times where you find yourself a little more in front of a camera. So then you remember yourself in the pictures where you look, or you take a photo from a great angle, and then, like, that's how you think of yourself all the time.
- [48:35]
B
I think that you have a point, because there's definitely this part of, you know, type 1 diabetes management that. That people don't see where it is the, you know, sort of like this overwhelming sense of, you know, you're managing stuff all the time and you're making decisions, and for a parent, you're worried about your daughter, so you're. You have that sort of as, like, background noise all the time. And I. I definitely think that can impact your health.
- [49:04]
A
Worry is not.
- [49:05]
B
Is boy worry, like, coming. Coming out of this. Now with Arden being a young adult, you know, you will be moving into a different phase where it really is her. Her deal and her, like, you know, will it free up, like, that mental space in your head and, you know, you'll have, you know, all of this other.
- [49:24]
A
Well, I'm gonna say no. Probably.
- [49:27]
B
You always worry about your kids, but the diabetes aspect is a whole other.
- [49:32]
A
Well, yeah, I mean, it's nice to say, but let me tell you this as a great example, right? Last night, I told you when we first got on, like, I slept in this morning because I was up in the middle of the night. So last night, I don't know, around 3:15 in the morning, I've woken up by something. I'm like, what was that? You know, and it's Arden's blood sugar and it's going up and she's at the end of a pump. And I think to myself, like, if I was what I thought was even at 3:15 back in the day, I never would have let her go to bed with this pump on, right? I would have said, hey, we're gonna change your pump before you go to bed. Right? But she's trying to ride it till the end. It's different. I'm not telling her what to do, blah, blah, blah.
- [50:14]
B
So you hate to waste the insulin.
- [50:16]
A
Trust me, I don't care about that part. I care about the control part. And it's an old site, and I see it not working well at the very end here. And I would have swapped that pump before she went to bed, but she didn't. That's fine. It's 315. I'm seeing a 140 diagonal up number. And I think at first, I guess I'm tired. I don't think of it at all. It probably just hits me. The algorithm will take care of it. But then 3:30 comes around and I realize it's 165. And I go, okay. So I pick my phone up and I can still like remote bolus, like. Cause, you know, walking into our room and she. She's 21 is weird. You know, I tried very hard not to do that. I looked at what the. The algorithm had been doing. I reset a slightly lower target to make it more aggressive. And then I. I put some insulin. And after I put the insulin in, I thought, I don't think that was enough. But I don't want to be too aggressive because.
- [51:14]
B
Right.
- [51:14]
A
She really does take care of this on her own, and maybe I should just go wake her up and blah, blah. But I just. Anyway, I put in the little bolus. Twenty minutes later I was like, that wasn't enough. I put in a little more and 30 minutes later I was like, this isn't going to do it. I made one larger bolus. I don't know, like a unit and a Half or something like that, you know, larger compared to the first one. And I did get on top of it and I did get her blood sugar back down to like 95. And then I went back to sleep at 5:30 in the morning and I was like sitting there trying to be busy. I was actually doing stuff for the podcast. I made this great. I think I decided on a new series to make with Jenny. Like, I was doing a bunch of stuff, but I wanted to be asleep because I'm old. I can't be up in the middle of the night like this.
- [51:58]
B
Right. Yeah.
- [51:59]
A
Right. So now I'm a little lucky. I didn't. I wasn't recording with you until 11. I just opened up my phone and pushed my alarm way back. And I thought, I'll. I'll make this. Sleep up in the morning. But most people do not have that luxury. And, you know, like, most people can't just say, well, I'm just not going to get up in the morning. Yeah, my. I have a weird job. You know, what I realized is that once I was up and I saw her blood sugar rising, I couldn't just go back to sleep and let it keep going up. Like I wasn't going to be able to act.
- [52:28]
B
Yeah.
- [52:28]
A
I mean, it just seems unreasonable not to do something about it, knowing the situation the pump was in. End of us, like, this isn't. Yeah, it's not going to work.
- [52:36]
B
Up.
- [52:36]
A
Yeah. So she gets up this morning and the shower lately has been making her blood sugar rise. So she gets up in the morning and I think if I was in charge, I would definitely change that pump before she got in the shower. So she was getting like, fresh from that and I'd put in a bolus, but she's not going to do that. And I don't look because this is the part where she's going to have to figure it out. And she actually said, I was going
- [53:01]
B
to say, now she's at the age where, you know, I don't know how she felt about you, you know, being on top of managing her diabetes. You know, you had to be when she was very young. But as she got older, did she, did she look at it as sort of like, oh, thank goodness someone else is managing this for me. Or was she, you know, even like through her teenage years, like, oh, God, I can do this by myself, dad.
- [53:22]
A
Now, she was good right up until, like, she was fine with it. I would say like, her second year of college, we started to like, like, separate even more. I mean, we had been Slowly separating over time, which was the plan, but better. Second year of college, it was the first time I got like, dad, I'm an adult. And I was like, okay, yeah, because I thought you were 19, but whatever.
- [53:44]
B
Right. Is that hard for you to give up the control?
- [53:47]
A
What did Gwyneth Paltrow do to that poor man in that band? Did she thoughtfully uncouple from him or something like that?
- [53:54]
B
Right.
- [53:55]
A
When she said that, she's like, we're thoughtfully uncoupling.
- [53:58]
B
Yeah, yeah. You're thoughtfully uncoupling.
- [54:00]
A
Yeah, yeah, yeah. So what? So we were doing that. Right. You know, and have been doing that for, you know, to the point where we're not really. I'm not that involved, like, day to day anymore. But I watched this morning go exactly the way I knew it was going to go. And my hope is, is that she is now gathering the same data that I was gathering back in the day and that she will come to the same yes. Or similar, you know, conclusion that I came to.
- [54:29]
B
She probably will because she grew up with you as her dad and she, you know, to have that advantage of learning from, you know, because of all that.
- [54:38]
A
If I don't stop her from getting high overnight, she's not going to stop, but she isn't waking up.
- [54:43]
B
Yeah.
- [54:44]
A
And this morning because of, just because of the order she did things in this morning, her blood sugar popped up over 200. Now, I've seen, I can tell she's already changed the pump and she's put in insulin and it's going to come back down and she's going to be fine and everything. But, like, those are those little things. Like, I don't think she knows yet the value of stopping that 200 from ever happening. Not that it's a problem one time.
- [55:11]
B
Right.
- [55:11]
A
But if it's happening every three days, then there's a value in changing your structure, like how you structure your time. I 100% believe she's going to do it it. But she's, I'm watching her go through it right now and it's interesting because you probably one of the reasons I asked you earlier, like, you know, you're older, why don't, you know not to not beat yourself up? Right.
- [55:31]
B
Right.
- [55:32]
A
And I look at her and I realize that what she's doing right now is she's trying to find. She's trying to find the way she does it and she's trying to make it work within her life.
- [55:44]
B
Yeah. And she's still early on in being independent about it.
- [55:47]
A
Yeah. For sure. Yeah. Yeah. So I don't. I'm not. I'm not at all, like, I want. And she.
- [55:52]
B
And she also. She's at the age where she should be. She has a lot of other stuff going on, and she should be living her life and not constantly thinking about diabetes like some of us.
- [56:04]
A
And that's the balance that we're striking right now, is that. I see that. Listen, I'll say over and over again, in college, 21, managing it herself, somewhere between like a 6, 3 and a 6, 7. Usually she stays. I think that's awesome. Like, I've just. I've interviewed too many. Too many young women in college who were like, I don't know, I was an 8 or a 9 or a 10 or 11. I wasn't even paying attention. I don't know. Like, I think this is a crazy win, and I do think she'll get back to it. But she called it the other day. Something was happening the other day, and I was like, hey, Arden, like, I don't mean to be in your business. I was like, but please take a look at this. You know what I mean? And she said, dad, this is my health journey.
- [56:44]
B
Wow.
- [56:45]
A
And I was like, she's got such a sarcastic sense of humor that I couldn't tell if she was with me or if she. Yeah, yeah. Or. Or if she really feels that way. And what I. I kind of left the moment with was thinking. I think it's a little bit of both. Like, I think she's uncomfortably making fun of it, but she does mean that. Like, she means, I'm trying to figure
- [57:09]
B
this out, and she's learning as she
- [57:12]
A
goes, and I think she's doing terrific. Like, if she hears this as later in life, you know, Arden, I thought you were doing terrific the whole time you were doing it. So, yeah, there's still little stuff.
- [57:22]
B
Can I know our time is up, but I just wanted to ask you two things because I feel so fortunate to get to talk to you. I've listened to you for so long.
- [57:30]
A
You're not in a rush. Go ahead.
- [57:32]
B
You've done such a good in the diabetes community about just teaching people about, you know, how to manage their diabetes in a very in depth, intentional way. So thank you for that. But I wanted to ask you, why is it that, you know, the American Diabetes association will say, you know, you're fine between, you know, 70 and 180, like, that's the range you should be aiming for, you know, 6.4, like a 1C. You're okay, as long as you're under 7 and other experts in the diabetes field are like, no, you should aim for non diabetic numbers or you should be, you know, under. You should have like a 5.5 A1C. You know, why, why is there this like disconnect, you know, because sometimes you don't know what to follow. I kind of want to follow, you know, the guidelines of being a little more lax and thinking like I'm going to live a long, healthy life. But yet you have this other group contingent of people, you know, contingency of people saying, you know, you've got to be, you know, below 6A 1C. And I don't know what, what are your thoughts on that?
- [58:31]
A
Well, no one's invited me into a meeting to talk or to listen to what they're thinking. But my, from the outside, and at the risk of sounding like a, you know, a prepper who's, you know, building a coffee table out of dried, dry, good foods, I don't think I'd be looking for an institution to tell me how to take good care of myself. And I don't think it's because they have bad intentions. I think they probably make, make a decision that we're going to say something that will most reasonably capture as many people as possible.
- [59:03]
B
Right. And people who are like consistently above 200, if you can get them below 180 all the time, what a joy
- [59:08]
A
that would be for them. Right, right. And so they're not speaking to you one at a time. So I think they look at the technology, they probably talk to doctors. You know, what do you see in your practice? What are people capable of and talk? And I think the problem is they're talking about us as an amalgam them. So what can we expect the populace to do? I think they could handle 70 to 180. And there are going to be people that can't handle it and they'll, they'll drift out on the high side and their health will go the wrong way that way and there'll be people who can handle it, who I guess they're hoping will do what you did and learn more about it and, and go towards a lower, you know, more stable number. I just think it's a limitation of, I don't know, of trying to meet the masses. Yeah, yeah. How are you supp. Do that? And I do also think that it's a disservice to do that to people because why are we least common denominating people's health and Saying, look, there are going to be some people who can't maintain a 180 blood sugar. We don't want them to feel bad or whatever else they're concerned about there at the expense of a person like yourself who I think, think pretty clearly can keep an A1C in the fives if they want to. Why put that pressure on you that maybe you're working too hard and you don't need to be?
- [60:31]
B
Yeah, that's what I'm trying to figure out. Right? Like, am I working too hard?
- [60:35]
A
Because I see those conversations online all the time. People, they'll say, well, there's hasn't been any study that proves that having an A1C A blah, blah, blah, this low is any valuable. And I'm like, well, no, how are they going to study that? And so just saying there hasn't been a study doesn't make, doesn't make it a fact either. Like, you don't know. And I'm going to tell you they don't know either. And no one knows. So my opinion always is if I can't substantiate it, if God can't come down himself or herself and say, if you have a 6.5 A1C your whole life, you're absolutely going to be fine, it's not a problem, then why would I not err on the side of caution and push for a lower A1C or more time and range or a tighter range, A lower, tighter range range or whatever. Like that's a pretty big coin flip you're taking there because the day you find out it's not okay, you don't get to jump in a time machine and go back and do it again. You're, you're now stuck with whatever outcome comes. And so, so that's, you know, much like everything else in life, you're, it's a risk reward. You're, you have to weigh it on your own and decide how much effort am I going to put in and is some of that effort going to be wasted or am I going to, you know, or is it going to work out for me? Or by the way, can I keep a 5 5A 1C and still something goes wrong. Yeah, right. Yeah.
- [61:50]
B
You could get cancer.
- [61:52]
A
Yeah. And if you're, so if you're looking for, if you're looking for promises, I would say this life thing's probably not for you. Yeah, right.
- [62:02]
B
That's a good perspective. And then my last question is that, you know, now I'm interviewing you, but I, I just am Curious about your thoughts. You know, obviously, with all of this news about, you know, islet cell transplants and, you know, talk of a cure and all of that, and I don't want to be on the, you know, I think a cure is around the corner if it's really not. Where do you fall on that spectrum? I mean, I, you know, I'm hopeful and obviously a lot of the research out there and the clinical trials with the people that are off insulin now, you know, it's wonderful. But do you think that that is going to be something that's available to the masses, like in our lifetime around the corner? Forget about it. What do you. What are your thoughts about that?
- [62:39]
A
Let me tell you a story that I think is going to highlight how I feel about this. First, I'll tell you that I think it's really great. Great. I mean, it's fantastic. And I'm looking on my schedule right now to tell you that I believe. Where's it at? Maybe three weeks from now, I'm interviewing the lead researcher. Oh, for that thing.
- [63:01]
B
Dr. Wachowski. Wachowski. Oh. Oh, good.
- [63:04]
A
I already had Katie hand on.
- [63:07]
B
I listened to that one.
- [63:08]
A
And I mean, exciting stuff about, you know, the, The. That Tego. Yeah, the immune suppressant drug and all that stuff. I think that's all very exciting. And I think for Katie and the other people, like, there's some guy like number eight or something like that online. He's like, they just sent him back and gave him more cells, and I guess he's not using insulin. That is super exciting for him. You know, I also think you had to really listen to Katie when she said that she was lucky to be part of that trial, a viable candidate for that trial. So imagine how many people that said they wanted to be in it and they did some test thing. I went, sorry, it's not for you. Or at least at this time. Also, it's not FDA approved. It's not like it's. I mean, it's. It's. They're like trying to. It's a proof of concept at this point, and it seems very, very exciting. I agree with you. Having said that, I one day took out my recycling the way I had taken it out for years and years and years. And the truck went down the street and didn't take half of it. And I called the municipality and I said, why in the hell did they just take some of my recycling and not all of it? We talked it through and she said, oh, you still using that blue container? And I Said, yes. She goes, we're not picking up the blue containers anymore. And I went, how was I supposed to know that? And she says, it's on our website. And I laughed. And I said, you think I spend a lot of time on your website? Do you? I said, you didn't send out a note, call, text, email, letter, anything? No, we just don't do that anymore. And I said, I have to ask you, why not? And she said, the cans are too heavy. And I said, can I ask you a question? Why won't you hire people who are strong enough to pick up the cans? Wouldn't that be weird if I hired doctors who didn't know anything about medicine or a recycling guy? Guy who can't pick up the cans? Like, I was like, what is going on here? Well, and then she's arguing back and forth with me. And I was like, look, I'm not trying to be difficult. I'm like, I paid $75 for that blue can. Are you gonna give me $75 back? No, but we'll give you other cans if you want. And I said, but those cans are smaller, and you only come for the recycling twice a month. How many little green cans am I supposed to strewn across my property? How much property do you think I have exactly? What am I in the can? You know, storage business? I'm like, what's.
- [65:34]
B
Don't you know? I run a diabetes podcast.
- [65:36]
A
I'm busy. Okay. Also, the blue one held all my recycling. It was one nice can, right? So I said, okay, I'll go dump it into the green can. Are you going to come back and get it? She goes, no. I said, can I bring it to you? She says, no. I said, what do you want me to do with it for the next two weeks? And you know what she said? You can throw it in the trash. I said, well, then why in God's name am I recycling if I can throw it in the trash? And you know what? Her answers were not helpful. And she was in charge. I'm going to tell you that when institutions, when. This is how things work, is my point. And you're telling me, don't get your hopes up. Don't get your hopes up is my point. Yeah, yeah. Thank you. Thank you for taking my point out of that. I'll tell you the same thing that I've been thinking for, like, 15 years or more. I once interviewed a guy, a researcher working on. I think it was Veritex back then. They were making this pouch of cells they were going to implant under your skin, blah, blah, blah. And it was really interesting. Certainly didn't seem as quickly successful as this one out of Chicago right now. But point was, is they were having some success with it. And I asked him during the course of the interview, if you got it all together right now. Like I said, just say right now a bell went off and it works, right? I said, it works great. When do I at it? And then he started talking about, well, you know, we've got to source the cells and we've got to, you know, you got to put infrastructure in place to build the pouches and then there's got to be training that's done with the doctors and you have to find doctors that can do the procedure and like, you know, an insurance, of course you're going to loop in, blah, blah. And he pauses and he goes, I don't know, 15 years. And I said, so even if you figured it out today and it worked, for sure, yeah. You're saying 15 years later, that's when I'll see it. And so my, I think my point stands. I mean, you can see right now there's, you know, I don't believe that the current law even allows for the cells to be. I don't know, I'm not even sure. But right now there's legal issues with how, you know, how available the cells are going to be. The islet cells are going to be.
- [67:47]
B
Right.
- [67:48]
A
Even if you had a pile of them a mile high and 10ft, you know, and 10 miles wide, doesn't mean
- [67:54]
B
it's going to get to the people.
- [67:55]
A
It doesn't mean that how many doctors are going to do the procedure? I'm like, I mean, there's a guy doing it right now. What's he going to give him to? What's he going to put all 2 million of you in line and do it like. Right. Like there's a, you know, a drug protocol afterwards where you have to go, I think, what did she say? She's getting a, an infusion every 21 days. Who's doing that? Who's paying for that? You're going to go tell the insurance company right now they're going to pay for the.
- [68:19]
B
That and she's going flying to Chicago
- [68:23]
A
because they're only, right now, they're only doing the infusions there.
- [68:25]
B
There.
- [68:26]
A
Right. My point is there are a lot of, there are a lot of steps between now and then.
- [68:30]
B
Yeah.
- [68:30]
A
I also think things will change a lot between now and then. I mean, one of the things I would imagine. And she Mentioned is they'll probably try to find a way for you to give yourself the drug at home at some point. Right. Instead of it being infused or maybe they can send it to an inf. But these are not things that happen quickly. Yeah, right.
- [68:47]
B
It's hard to not be enthusiastic when all of this news is coming at you so quickly. But at the same time, I think it, it, like you said, you know, it's important to be realistic about.
- [68:58]
A
Here's where I'll complain. I think it's a bit. I need my right word. I think it's a little unfortunate that the way social media works and the way that people keep their accounts active and popular is intersecting with this. Because this is all very exciting. You should know about it. It's amazing. It could very well end up being what ends up happening for people. But when you give it to people in TikToks and Instagram Reels, it makes it feel like it's happening now, tomorrow. It is not happening right now, now. Yeah, right. And so my fear becomes, is that people will go, well, I don't really have to bolus that 150 because I'm
- [69:48]
B
gonna get, I'm gonna be cured.
- [69:50]
A
Yeah. They're gonna jam eyelid cells in my liver and then I'm gonna take some juice and then I'm gonna. Because they only heard, you know, the tick tock version of what's going on.
- [70:01]
B
Right.
- [70:01]
A
And also the people who are doing a good job of sharing their story, it also makes it feel like it's everybody. So for the same reason that they'll tell you social media is bad for young women, for exact example. Right. Like nobody holds a camera in front of themselves when they're not looking great and doesn't. And they're not at the beach or in the best part of their day or whatever. And so what happens is young girls see that and they think, my life's not that exciting. I don't always look this good, like, blah, blah, blah. It makes people feel bad. I think that that same thing of having someone stand up and just constantly telling you how well their trial is going makes it feel like, oh God, that's a thing that exists right now and I don't have it. And I don't think that's. I don't think it exists right now. It exists right now for those people, which is awesome.
- [70:51]
B
And it's really a handful of people.
- [70:53]
A
It's like, I am certainly not down on it. I think it's awesome. I just think that if, I mean
- [70:57]
B
It's a step in the right direction, but it could be years before.
- [71:01]
A
Yeah. Just keep in mind that my daughter's had diabetes for 20 years, and the Walgreens gave her the wrong test strips the other day. I've been getting them there forever. And you're. And I'm telling you that there's an infrastructure in place that relies on people and money.
- [71:17]
B
Yeah.
- [71:18]
A
And, you know, I mean, look at tzield, right?
- [71:20]
B
Yep.
- [71:21]
A
13 infusions over 13 days. It could push off the. The onset of your type 1 diabetes for a couple of years, maybe if. If you catch it in time. Time. I've interviewed people who have done it. Right.
- [71:32]
B
Yeah.
- [71:33]
A
But they had to fly somewhere, put themselves in a Hotel for 13 days. Their insurance didn't want to cover it. They fought with insurance over and over and over again while they were fighting with their insurance. They were losing the time they needed to get the thing. It almost didn't happen. Blah, blah, blah, blah, blah. I don't know what it actually cost in cash. I'm sure it's millions of dollars. Like, you know what I mean? Like, point being, like, there's not a. I don't know, a building full of band aids right now, and we're just trying to figure out how to get them to your house. Like, that's not what's happen. Happening right now.
- [72:02]
B
Yeah.
- [72:03]
A
Right. There's so many confusing steps that need to happen between the excitement you're seeing with these people and I am genuinely excited by it, and you actually having access to it, that I don't think my answer to your question is that I don't think that it's time to get excited that it's coming.
- [72:23]
B
Okay.
- [72:24]
A
Yeah. Yeah, I think it's time.
- [72:25]
B
That's a good perspective. I mean, I'm really looking forward to listening to your interview with Dr. Witla.
- [72:32]
A
Yeah.
- [72:32]
B
You know, see what he says about it. But, yeah, I mean, I think that's. People have been saying too, you know, oh, 20 years ago, they said a cure is right around the corner. Yeah. And I'm like you. I mean, I'm very excited by it. And obviously it is a step in the right direction. But I understand what you're saying about, you know, the process of getting from there to all type 1 diabetes diabetics no longer needing insulin.
- [72:56]
A
Yeah. I mean, I saw a guy on Instagram and, you know, he got it one time and it. It lowered his insulin needs but didn't stop them. And they had to bring him back and give him more cells. That's part of the process, apparently. And so this is still in the testing phase. They're trying to figure out, you know, how much to give you to get the outcome you're looking for. Like, they don't know any of. I'm going to guess that guy's going to tell you. Like, look, I've got an idea, but, you know, I'm going to have to do this 50, 100 more times before I even have an answer.
- [73:26]
B
Yes. And is it. Is it worth it to just delay? You know, you're delaying the progression. But if you're still going to get it and need Insulin anyway, you know, Insulin is not a bad thing.
- [73:35]
A
I don't know that any of us know where it's going to end. So I'm excited to talk to him because I'm going to ask him those questions.
- [73:41]
B
Okay.
- [73:41]
A
And I try. And quite honestly, I almost recorded with them, like, five months ago, and then there was a scheduling problem, so, like, it took this long to fix, like, to get back around it again.
- [73:52]
B
And now. Now is probably the better time to
- [73:54]
A
talk to him, maybe. Yeah, hopefully. And hopefully listen. Hopefully. It's a great conversation. The guy comes back on every six months and gives you a little update about what's happening and gives you a feeling. But I'm gonna ask him. Maybe he'll tell me differently. Maybe he'll say, no, Scott, get real excited. Like, you know what I mean? I don't know what he's gonna say.
- [74:09]
B
Well, I'll be. Listen. I'll be listening for sure. And also, please thank Jenny for me because she really taught me everything I needed to know about Omnipod use, so.
- [74:17]
A
Oh, you're welcome. I'll let her know.
- [74:19]
B
Appreciate that.
- [74:20]
A
Yeah, Yeah. I mean, it would have been nice if you would have ended saying how valuable the podcast was for you, but sure.
- [74:24]
B
Jenny as well. No, Jenny, I think I did.
- [74:26]
A
I think I did.
- [74:27]
B
Did allude to that.
- [74:28]
A
Yeah, I know, but this was the last thing people hear. You know what I mean? And this is what sticks in their head. Scott doesn't think that the cure is coming and Jenny's better. That's what they're going to leave this with.
- [74:38]
B
Scott thinks there's no hope, and Jenny's awesome.
- [74:41]
A
Scott's a hopeless. And Jenny's awesome. I'm very hopeful about it, and Jenny is awesome, so.
- [74:47]
B
All right, that's great.
- [74:48]
A
I appreciate you doing this with me. I really do.
- [74:50]
B
No, thank you so much. And, you know, just really, if. If it weren't for Juice Box, you know, you can really pick and choose what's right for you in terms of what you need to listen to and what's relevant for you. And you've done so much in the diet world of diabetes and education, so thank you.
- [75:05]
A
Well, Naomi, you can't say it now. It feels like I bullied you into it.
- [75:08]
B
You know, I didn't even remember that you told me to.
- [75:12]
A
I appreciate it very much. I actually did something recently. I'm, I had a hospital reached out to me and said, can you please make it easier to share the podcast for us? Us? So we've been building like a website to like, like where they can kind of go and print from or, or text an image of lists of things and stuff like that.
- [75:32]
B
Right, right.
- [75:32]
A
I was like, okay, like, I think I got it about where they want it. And so I went on to the Facebook group and I was like, hey, you know, if you're like a healthcare professional who suggests the podcast, could you reach out? Because I need to, like, share this link with you and see what you think of it. And like a couple of dozen people reached out in 24 hours and they were like, oh, I, I, I was like, oh. I was like, oh, I'm glad people, you know, so hopefully we'll make it a little easier on the doctors so they can and the educators because apparently they're sharing like, things they're printing out or, you know.
- [76:04]
B
Right. Like a hand, like an old school handout or something. Yeah.
- [76:07]
A
They're looking at me and they're like, could you maybe, you know, make this easier for us, please?
- [76:12]
B
And, you know, a lot of people, some people get their info, you know, people get their information in different ways. So for the people that like to listen and are, you know, out and about all the time and have, have earbuds in, you know, it's, it's so helpful. And the Omnipod one, for sure. And like bold beginnings. I mean, at the beginning, I really did listen to those over and over again.
- [76:33]
A
Yeah.
- [76:34]
B
Because you, you pick things up the second time that you missed the first time or you need it reinforced, you know, and so I agree.
- [76:41]
A
I think it's a thing that people do end up going over a number of times when they're trying to teach themselves.
- [76:47]
B
And it's the one thing when, when you're diagnosed As a type 1 diabetes diabetic, you're not specifically told this is a disease where you will have to educate yourself and do deep dives yourself.
- [76:58]
A
Yeah.
- [76:59]
B
You know, I almost wish I had been told that from the beginning. So it wouldn't have been such a shock, you know?
- [77:03]
A
Yeah, no, I hear you. Because it really does feel like what I really took from what you said earlier was that like, even though you're focused on it and you're a bright person, you're trying to learn and everything, like, there is still that, like, there's, there's an insecurity in your mind, like, am I doing the right thing?
- [77:20]
B
Is this, am I doing too much guessing game?
- [77:23]
A
Yeah, yeah, yeah, yeah. I, I, that wasn't lost on me that you said that. I thought that was really interesting. So anyway, thank you again for doing this. Hold on one second for me, okay?
- [77:32]
B
Okay.
- [77:40]
A
A huge thanks to my longest sponsor, Omnipod. Check out the Omnipod 5 now with my link omnipod.com juicebox you may be eligible for a free starter kit. A free Omnipod 5 starter kit at my link. Go check it out. Omnipod.com Juicebox terms and conditions apply. Full terms and conditions can be found@ omnipod.com juicebox A huge thanks to US Met for sponsoring this episode of the the Juice box podcast. Don't forget usmed.com juicebox this is where we get our diabetes supplies from. You can as well use the Link or call 888-721-1514. Use the link or call the number, get your free benefits check so that you can start getting your diabetes supplies the way we do from US Med. Hey, kids, listen up.
- [78:39]
B
Up.
- [78:39]
A
You've made it to the end of the podcast. You must have enjoyed it. You know what else you might enjoy? The private Facebook group for the Juice Box Podcast. I know you're thinking, oh, Facebook, Scott, please. But no. Beautiful group, wonderful people, a fantastic community. Juice box podcast. Type 1 diabetes on Facebook. Of course, if you have type 2, are you touched by diabetes in any way? You're absolutely welcome. It's a private group, so you'll have to answer a couple of of questions before you come in. We make sure you're not a bot or an evildoer, then you're on your way. You'll be part of the family. I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of the Juice Box Podcast. Have a podcast. Want it to sound fantastic? Wrong way recording dot com.