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Podcast Episodes

The Juicebox Podcast is from the writer of the popular diabetes parenting blog Arden's Day and the award winning parenting memoir, 'Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home Dad'. Hosted by Scott Benner, the show features intimate conversations of living and parenting with type I diabetes.

Filtering by Category: Type 1 Diabetes

#1164 Cold Wind: Problems on Both Sides

Scott Benner

"Aurora" is an E.R. nurse.

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+ Click for EPISODE TRANSCRIPT


DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends, welcome to episode 1149 of the Juicebox Podcast.

Today, the person we're calling Veronica is a 47 year old type one. She was diagnosed at 12 years old and she works in a doctor's office. Today's cold wind is particularly chilling, as Veronica will talk about how the doctors in her office were drunk and high and dispensing drugs that were outside of what you might expect from an endocrinologist. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. The T one D exchange is looking for US residents who have type one diabetes are are the caregiver of someone with type one. All they want you to do is go to T one D exchange.org/juicebox. and complete the survey. That's it. It'll take you about 10 minutes it'll help people with type one diabetes. It will help you and it will support the Juicebox Podcast T one D exchange.org/juice box. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes

this episode of The Juicebox Podcast is sponsored by the only implantable sensor rated for long term wear up to six months. The ever since CGM ever since cgm.com/juicebox. This episode of The Juicebox Podcast is sponsored by us med U S med.com/juice box or call 888721151 for us med is where my daughter gets her diabetes supplies from and you could to use the link or number two get your free benefit check and get started today with us MIT. This episode of The Juicebox Podcast is sponsored by the Omni pod five, Omni pod.com/juice box. My daughter Arden has been wearing an omni pod every day since 2006. And it has been a constant friend in her life with diabetes, consistent tubeless and worryfree Omni pod.com/juice box. So let's find out a little bit about you. Do you have type one or do you care for somebody? Who does?

'Veronica' 2:44
I have type one?

Scott Benner 2:45
How old were you when you were diagnosed?

'Veronica' 2:47
12

Scott Benner 2:50
Okay, about how old are you now?

'Veronica' 2:53
47.

Scott Benner 2:55
Seven. Okay. 20 230-240-2035 years ago? Yeah, that's a long time.

'Veronica' 3:04
It's been a hot minute time flies when you're having fun.

Scott Benner 3:07
Are you having fun?

'Veronica' 3:08
The first couple decades were rough.

Scott Benner 3:12
last 15 years, it's really coming together.

'Veronica' 3:15
I mean, honestly, yes. The technology has made things much, much easier. My highest agency was 19. Oh, wow. And that was 10 years after diagnosis. So I mean, I knew better.

Scott Benner 3:30
Yeah. And 20. That's just 25 years ago, which makes it like 1999 2000 ish around there. Yep. Yeah. Wow. You know, I just saw I get when people leave comments on things like I get notes about it and stuff like that. I just saw somebody leave a comment on like a YouTube video. And the person's like, you know, I've had diabetes for a really long time. And I was very accustomed to blood sugars and the 300 words and a one sees like, as high as 12. And then I got an Omnipod five, and the person's like, you amazed at what's happening. I'm waking up my blood sugar is like 115 in the morning, like that kind of stuff. And then I read that 20 minutes ago, and then you literally came on and said everything was a hot mess till technology got better.

'Veronica' 4:13
Well, I got a pump in 2001. And but I hate finger sticking like that is the worst. And so and I didn't like those early CGM that forced me to prick my finger. So

Scott Benner 4:27
I kind of avoided it.

'Veronica' 4:30
Did you try it? At least or no? So I got a pump in in 2000 2001. And I've worn a pump since then. And my agency was probably 1011 until the Dexcom G six came along.

Scott Benner 4:44
So walk me through how that happens. Is it partially because you don't want to test your blood sugar? Is it apathy, like where do you

'Veronica' 4:51
it's apathy but like so when I was diagnosed, I was told there would be a cure in five or 10 years and I think at that point, I just kind of decided I don't want to live five or 10 years with this disease. And I didn't make many plans for the future. And I got to the 10 year mark, and I was like, What do I do now? I mean, there's just a lot of stuff but so on with G six, and pumping, we were probably at eight, nine. And then with the control IQ, then it's like six, seven.

Scott Benner 5:21
So if you have access to the data, with a G six, for example, and you have a pumps, you're not shooting insulin all the time. So it's, it's as easy as pushing a button. And eight or nine a once the C still says to me, I'm not really counting my carbs. I'm not Pre-Bolus and meals, I'm not correcting highs Is that about right?

'Veronica' 5:39
Yeah, I still I'm not great at Pre-Bolus meals, I just, I struggle with that. And so, and there's a lot of other things that have happened, I struggled with depression for a very, very long time. diabetes, most of us know comes with a very generous side serving of depression. So and but I was able to mask it very well. And about five years ago, I had my first TMS treatment, transcranial magnetic stimulation. And that was pretty life changing, but it unmasked the ADHD that has always been there. But the depression always hit it. And so now I'm learning to like, I can finally identify the ADHD and know why. I'm not good about Pre-Bolus thing I just forget, like, I'll just skip a meal altogether and not even notice. So skipping. Bolus is like child's play. Like that's just how I roll

Scott Benner 6:37
when you said you could mask the depression. How did that work? How did you like nobody

'Veronica' 6:41
really knew the extent of the depression like I, if you meet me face to face, I'm happy I'm like, but there was still just this bone deep. And there were times that it would get a lot worse where I just couldn't get out of bed and couldn't function. But all of my energy would go into my work. So there was not any energy for anything else.

Scott Benner 7:08
Do you have a thyroid issue at all?

'Veronica' 7:10
Absolutely. That's the other side surfing.

Scott Benner 7:14
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'Veronica' 9:55
I don't remember much prior to diagnosis. I don't believe I was depressed I also believe that my elementary education was unique and could easily mask ADHD. Then I went on to middle school and sixth grade I get diagnosed. That's a whole nother story. That sounds crazy. How

Scott Benner 10:16
is it unique,

'Veronica' 10:17
your that education piece that would mask ADHD. So I went to a public school. And it was a special program that I got to choose my teachers and my classes. And there were no letter grades. I just wrote a letter home to your mom and dad, this is what I've been working on. So the mornings were split up between language arts and math. And it was a very tiny school that were for teachers when I started there. And I was there for five years. And then the afternoons the teachers would do two to three week units, teaching something that they were interested in which let me tell you, it makes a huge difference in education when the teacher is passionate about it. I didn't. This is crazy to say, I did not know the difference between science and social studies until I was in middle school. Because get this it's all connected. The

Scott Benner 11:10
what hippie part of California you from exactly. It was in the Northeast? Oh, it wasn't California. It was not California. All right. I got it. I see what's happening here. Yeah, so not hippies, high minded intellectuals.

'Veronica' 11:23
It was a nice combination of the two. Gotcha. But so for example, if we were studying monarch butterflies, we were looking at their migration patterns and how the weather affects it and the geography of where they go and calendars of when they when they migrate and their lifecycle. And so everything is connected. And that's why when I talked to people I talked about, well, we can look at the science of history, and we can look at the history of science. And so that's why those two things have have always been they're all interconnected. There's not any difference in my brain.

Scott Benner 12:00
All right. So is there any chance that well, let me ask first, when did the thyroid diagnosis come?

'Veronica' 12:08
I was 17. Do you can manage that? Well, it's okay. It goes up and down. And I, you know, I'm not great about being super consistent with my doses. Right now I have it set to where the doses set. Well, I just changed insurance. So I have to switch to unit three. So that's going to be a cluster of confusion. Yeah, I the dose is set so that I can miss every once in a while and not see a big impact.

Scott Benner 12:38
Or do you have as much trouble with that as you do with the insulin?

'Veronica' 12:42
Not as much? I don't think okay. I mean,

Scott Benner 12:45
so high blood sugars, and an unmanaged thyroid could easily give you depression? Yeah, yeah. But there's a doctor ever tie that together for you. Like, hey, Veronica, if we take our insulin and keep our blood sugar from being high, you'll avoid this cloudy feeling you maybe you'll feel better, your head will be clearer, you'll be able to, like live easier, like that kind of stuff.

'Veronica' 13:08
Not in relation to the depression, you know, lack of energy in my late 20s and early 30s. They're always like, it's your blood sugar. It's your blood sugar. It's your blood sugar. And I'm like, I'm doing the best I can with what I've got. Like, I don't know why I can't do the things I need to do. And so it was always get your blood sugar under control. And I never really believed them. I was always like, that's just a line. Like, there's gotta be something else.

Scott Benner 13:33
But the man is just trying to get you to do what they want to do. Yeah, they're

'Veronica' 13:37
trying to manipulate. But now that that my agency is better, and like, I'm feeling more energetic, and my husband and I joke, and we're like, we're in the prime of our lives right now. Like, who needs your 20s or 30s? Like, this is this we're loving life.

Scott Benner 13:55
I see your knees don't hurt too bad. No, no, no, here you go. Wait a lot of sores. Okay, so you just said I'm doing the best that I can like referring back to the past. In hindsight, were you doing the best that you could? I'm starting to take it for granted. I am I'm starting to take for granted that Ardens diabetes supplies just show up. But they do because of us med us med.com/juice box, we get an email that says you know do you want to refill your order? And you click and say yes, and then it just comes to the door. There's not a lot to say when things are done well yeah, I could stand here and tell you us med carries Omnipod five Omnipod dash Dexcom G seven G six tandem x two libre three libre two. I mean, they've got there's so much. I'm not even listening at all. I should be. I will at the end. I promise. My point is this. It just works and we Don't talk about things enough when they just work us med.com/juice box or call 888-721-1514 Get your free benefits check and get started today with the white glove treatment offered by us med us med here's what they got. FreeStyle Libre three and two. They got it. Omni pod dash. Yes. Omni pod five, aha, tandem? Yep. What about have they served a million people with diabetes since 1996. They have better service and better care is what you're gonna get from us med but you're also going to get 90 days worth of supplies, and fast and free shipping. They carry everything from insulin pumps to diabetes testing supplies, the latest CGM, and they accept Medicare nationwide. Find out why us med has an A plus rating with the Better Business Bureau at us med.com/juice box or call 888721151 for not the best that there is the best that you that you had available to you did. Does that make sense? The difference? Yeah,

'Veronica' 16:03
yeah. Like I'm gonna be really generous with most diabetics out there. I honestly believe that most people with diabetes are doing the best they can with the information they've been given, and they are sorely under educated. And you are as well. I don't know that I am. Like, I am able to pick things up and piece things together. And so in my role, currently, I talk a lot to people. And I'm a big advocate for experimenting with yourself. You know, I'm like, especially with the type twos and putting them on CGM. I'm like, experiment, see which foods drive it up. And then and I'm not about saying don't ever have that food again and like, minimize it, reduce it, don't don't use that as much. If you notice that rice makes you go up every day, then, you know, you got to change that has to change or find a good substitute. But I think most I mean, honestly, when I was, I don't know, 13 I had a week of inpatient education at Joslin diabetes Center in Boston. That was when insurance would pay for such wonderful things.

Scott Benner 17:18
But it didn't I mean, you still struggled right out of the gate though, right? With giving yourself insulin you didn't like the the fingerprint looks like I didn't like

'Veronica' 17:26
the fingerprints. So alright, let's go to the diagnosis story. I had an afternoon paper route. And the day before I was diagnosed, my one of my teachers said, NAME you're not looking very well. Are you okay? And I said, Well, my mom thinks I have something called diabetes, but I don't know. I'm going to the doctor tomorrow. I do remember drinking a ton of water. In fact, I felt like it. I would drink water. It would just still come out cold. right through me. It's

Scott Benner 17:56
a funny way of saying it went right through.

'Veronica' 17:57
Yeah, it was it was ridiculous. I finished up my paper out that afternoon, grabbed a snack at home before my dad took me to the doctor. And my mom ran a home daycare. And so the snack of the day was fluffernutter on graham crackers. And so that's peanut butter and fluff. Marshmallow Fluff. And I took an entire sleeve of graham crackers with and made them into the peanut butter and fluff sandwiches and ate the whole thing before going to the doctor. Oh my gosh. So yeah, my blood sugar was 800 or something.

Scott Benner 18:33
How did your mom know you had diabetes? She knew

'Veronica' 18:36
somebody that had it. And so she had grown kind of concerned I was losing weight. When I was diagnosed I was 95th percentile for height and fifth percentile for weight. And I think her cousin's kids had it as well. diabetes, I had never met them. I still don't think I have kids.

Scott Benner 18:58
I got it. So she had seen it before a little bit and then recognize some of the symptoms from other conversations she's

'Veronica' 19:05
probably had in the past. Yeah. And she didn't take me to the doctor my father did. Because she was at home with the kids watch. at the daycare. Yeah. And so they he took me to the doctor and the doctor said, okay, she's got type one diabetes. This is not a death sentence. Life still goes on. So continue with your normal activities. My dad took me over to the hospital and they started an IV. And he left to go home to get mom because they only had one car. Because this was the 80s Yeah, that candy striper came around and asked if I wanted a candy bar. I was like, oh, yeah, and and then she looked at my chart and she's like, you can't have candy ever again. I was devastated. So what are you talking about? So my mom came that night. This is where it gets tricky. The the doctor had said don't change you know your Plants life isn't ending life goes on. So keep your plans. The next day, my mom flew halfway across the country, to her parents on a trip that she had planned. And so I was in the hospital, she was still away. My dad learned to give me the injections and brought me home from the hospital on a Friday and gets

Scott Benner 20:22
tricky because you felt abandoned or why? Yeah, I

'Veronica' 20:25
mean, like, What parent does that?

Scott Benner 20:30
I mean, is this a thing we have come to expect from her over time? Or was it a one off like, weirdo thing, whereas the doctor said, Don't change your life? And she's like, well, I have a trip planned. So I guess I'll take it.

'Veronica' 20:40
She's never been real involved with the diabetes care, and partly probably from the beginning. And and you know, we joke about the abandonment issues now. But I still got a lot of work to work through with that. But that's just my work

Scott Benner 20:53
to parents still together. Yeah, yeah. And she didn't leave you leave you she just went away on this trip and came back. You went away on

'Veronica' 21:00
the trip. She didn't tell her parents before she left. And then she got there. And they could see something was wrong on her face. And they were mad at her for going. But they were auctioning off the family farm that had been in the family for 150 years. So I mean, I don't know, like, what would I do as a parent? I don't know. Like, you don't know. Do

Scott Benner 21:20
you have kids? Yeah, I

'Veronica' 21:21
have one. I would probably stay with her. Make sense. Which is funny, though. Because I, in our family on the hands off mother, my husband works at the school that she goes to and so they commute to and from school together. And, you know, he's was a teacher and so he's more hands on with the homework. And then I am is that

Scott Benner 21:44
because of how you were raised? Do you think you are you mimicking what your mom did?

'Veronica' 21:48
I don't know if I'm mimicking I just I know that the way that it's set up that they spend more time together. I also know that the elementary school experience that I had doesn't lend itself towards understanding her elementary school experience. Now that she's in high school, you know, we we compare, you know, we we talk Latin, we talk, biology, whatever she's taking, and, you know, work through the whole the homework, so,

Scott Benner 22:17
but you're not you're not emotionally disconnected from her though. No, no, just some of the day to day stuff falls more toward your husband. Yeah, I gotcha. All right. What do you do for a living now?

'Veronica' 22:29
So currently, I am. My title is point of care specialist. I work in an endocrinology office for a small distributor slash pharmacy have diabetes technology. And there have been some changes in the office since I've been there. But when I started, I was paid mostly by the company I worked for and a little bit by the doctor's office so that I could fall under the pump training contracts. And so I'm a certified Omnipod, and tandem trainer. And so I start people on CGM EMS, I get their orders going into the Alright, was doing prior authorizations. The doctor has since been acquired by the hospital and now I have no access to records at all. So it's changed but it's really it's been good. Okay. So

Scott Benner 23:19
you work for a company that we does distribution? Yes. Okay. So they're

'Veronica' 23:24
both DME and pharmacy, mostly Medicare, but soon to have some changes to that. So that's going to be good.

Scott Benner 23:31
And what's your educational background?

'Veronica' 23:32
Oh, gosh, um, I found a five colleges five, I don't know four or five. And I have an associate's degree in general studies. And I have that's an AE in General Studies. And then as in nuclear medicine, technology.

Scott Benner 23:48
Okay, what did you do before this?

'Veronica' 23:50
I worked with a homeless for a year and before that I was at another Endocrinol office as front desk, but ended up being their pump trainer and doing pretty much what I do now. So that job prepared me for what I'm doing now. But it was a Worcester house. So. So that was during COVID. So that was right when COVID started. And they work from home for a year and a half. Everything from home. And so I went into the office every day through COVID, collecting co pays, and doing punk trainings and all of that, but they also Hindsight is 2020. I didn't always see it while I was there, but pretty sure there was some pretty heavy drug use and a lot of drinking and

Scott Benner 24:36
for I'm sorry for you or for them for them. Okay, so are you talking about the people running the office?

The providers? Oh, okay. So

the doctors were involved in a lot of heavy drug use and drinking. Yes. I think he's your endocrinologist. Yes. Ah, geez. How did that impact the practice? They were were

'Veronica' 25:00
able to hide under the cover of COVID. And so a week before I was fired, one of them was like, Oh, we love you so much. We want you to stay with us forever. You're going to be such a wonderful diabetes educator level, blah. And I just smiled and nodded. I was seeking an exit plan at the time. But I also had a home refinance in the works. The day that I got fired, the phones went out and I was in and out of the office, trying to fix that. And I came back in and I could tell she was not happy with me. And she just started screaming in front of a room, waiting room full of patients get the eff out of my office. You have no I top of and then her husband had, it was a married couple that were the two providers in the office. And he had she charged at me at one point, and he had to hold her back. And I was like, I'm gathering my stuff. And I'm out. And I still to this day don't know why that happened. Were they both using? I am not sure. I suspect okay.

Scott Benner 26:02
Did they do it in the office? Like were they hired drunk? Like during the day,

'Veronica' 26:06
once they came back from COVID, there were a number of days that we had to send her home, quote unquote, sick. And he would he would cancel his day too, and take her home and care for her. And Hindsight is 2020. And I'm like, Oh, my. So yeah.

Scott Benner 26:26
Do you think that impacted the care they were giving to people?

'Veronica' 26:29
Oh, absolutely. People, the patients absolutely adore them. Absolutely adore them. In fact, she was my provider before I got fired from working at the office. And I enjoyed her. But I knew there were some things that were off. But like, it's a very codependent relationship, they will tell patients with patients want to hear and do whatever the patient wants. And, but, and if the patient has any problems with the front desk, they'll say, Oh, I'm so sorry. The front desk let you down. And I can't go and say to the patient, I have messaged her 15 times every day for the last 15 days and she has not responded. She is not doing her job.

Scott Benner 27:15
And then puts it back on the people working out front rack

'Veronica' 27:18
she'll she'll put it back on the people working up front and then play savior. So she's, she's making this problem and then saving the patients from it so that they never abandon her.

Scott Benner 27:30
Oh, you think that's on purpose? Like, do you think she created the problem to save the problem?

'Veronica' 27:36
I don't think she knows any other way of operating. Okay. Okay,

Scott Benner 27:41
I see what you're saying. Maybe somebody was pretty bad to her raise and her is what you're thinking of? It's quite possible. Yeah. Gotcha. Well, gosh, I wonder how many people ever wondered if their doctor was drunk? What kind of drugs do you know?

'Veronica' 27:58
Everything except ketamine.

Scott Benner 28:01
So heroin?

'Veronica' 28:04
I don't know if that was happening while I was working there. Okay. Coke. I don't know what was happening while I was working there. I know that hindsight, and from the wine I've seen in the office and the the pictures of of the alcohol consumption for COVID. I know there was alcohol and highly suspicious there were other drugs. She is flat out admitted to, to me that she's used everything except ketamine. I see another girl in the office that constantly had to heroin not like another employee. Yes. Like it like out front or a nurse in the back or something like that. The medical assistant? Yeah,

Scott Benner 28:45
I guess it's easy. But

'Veronica' 28:47
I grew up fairly sheltered. I didn't. I didn't even know what we'd smelled like until the job after that. Which is hysterical to me. After that. I went and worked with the homeless for a year and I absolutely adored that. So that's where I learned about weed.

Scott Benner 29:06
That's the homeless tell you about weed? Yeah, doctors more high end liquor and things like that. Yeah. It's nice. Holy crap.

'Veronica' 29:17
Oh, that's just the tip of the iceberg. Keep going. Like, that's that office. That pretty much sums. Oh, well. I mean, the other part of the story is, I can't make a report to the state or anybody about that, because I was fired. And then because it would be retaliation. But my dentist is in the same building. And every time I go to the dentist, he says, Oh, I started stumbling to work again today. And I say, okay, I get that. I can't report her, but you can make somebody has got to report her. But he says, oh, no, that's her husband's job. Okay, whatever. How long

Scott Benner 30:00
as that I mean, that practice been up for over a decade, probably

'Veronica' 30:03
a decade or less. Okay. They've, you know, they've made the rounds in our area in different hospitals and groups, and then they made their own practice together.

Scott Benner 30:15
Do you think you have to work there to know that about them? Or do you think that's common knowledge and people just ignore it?

'Veronica' 30:20
I think you have to work there to really understand it. But if you look on the court records, you can see the DUIs. Oh, I see. Gotcha. Oh, and felonies, I'm sorry, felonies for assaulting a police officer.

Scott Benner 30:36
Oh, you can't do that anymore. What's the World Cup? Oh, my gosh, I wonder how people can go about looking into their physicians. You don't I mean,

'Veronica' 30:48
I mean, other than knowing, like, if I look up the NPI, there's nothing. It's not until I look on the court records that I can see. I say,

Scott Benner 31:02
did you notice any like, was there a decline in care that they were offering people? Like I know, you said they basically just did whatever people wanted. You call it a code to pay? Yeah, between her and the.

'Veronica' 31:14
I mean, like, I will say that was the first endo practice I worked in. There were a lot of testosterone patients that were having to go to the one blood, because they will probably say keenetic. Which means if I'm not mistaken, that just means you're given way too much testosterone. The other thing was like, they were like, Oh, we don't need to palpate a thyroid, because the changes are so minuscule that we're just gonna send them out for for ultrasound anyway.

Scott Benner 31:53
So they may be overmedicating testosterone patients. Yeah. Yeah. And then not doing the physical checks on thyroid that that are called for. Yeah. And then if that if patients pushed for something, whether it was medically necessary or right or didn't matter, they would just kind of went with the flow to keep everybody happy. Keep everybody coming back.

'Veronica' 32:16
Yeah, well, I mean, he's, he's practicing as an endocrinologist. I don't think he's a board certified endocrinologist. But he's prescribing a whole lot of controlled substances for an endocrinologist like I don't in the other practice I'm in they're not prescribing. Other than testosterone. There's no controlled substances prescribed. What

Scott Benner 32:41
are some examples of stuff you saw prescribed out of their

'Veronica' 32:45
oxy code on from

Scott Benner 32:47
your Endo? Yeah.

'Veronica' 32:51
In fact, one patient, she wasn't real old, she passed away. And apparently, he joked to one of the other people in the office that it could have been his fault.

Scott Benner 33:02
That's something her third third hand, third hand, okay. Like, hey, I might have given her too much of the Oxy

'Veronica' 33:11
might have over medicated or, I mean, like she was, she was drug seeking. Like, like, Yeah, but when you're using yourself

Scott Benner 33:20
in the game, yeah. game knows game. I see what you're saying. Yeah. Oh, well, that's that's something. Yeah. This is usually the time in the interview when I tell everybody give up. Oh, my gosh, I never know what people are gonna say. So this has been something that's an adult endocrinologists office. Yes. So I'm assuming plenty of type two patients. Yes. Now these people, if they're going there for good help, they're not going to be finding it.

'Veronica' 33:53
They care. It's just such a weird thing. I don't know how to describe it because like I was her patient, and I, you know, she did what I needed her to do and was helpful and some patients are getting okay care and other patients are iffy. And it really depends on

Scott Benner 34:12
if your oxy buddies or not.

'Veronica' 34:14
I don't know. I have no idea. Like, holy

Scott Benner 34:18
hell. Now you're at a different doctor's office now. I am okay. And do you see any wrongdoing there? Is that a good experience?

'Veronica' 34:29
I enjoy this office that I'm working at now. I like it a lot. I'm not sure I could find another endocrinologist to work with that would understand my perspective the way this doctor does, okay. Because he has type one. And so there's a doctor in the office and there was a nurse practitioner. And at one point after Easter last year, I had my desk drawer are full of stale Easter candy. And the nurse practitioner came in and was like, Do you have any snacks? And I was like, Yeah, and I opened up my drawer and sheets. Her eyes got wide and she's like, Oh my gosh, you're so bad. And I'm like, normally when people tell me I'm a bad diabetic and like, you're not my doctor, leave it between the doctor and I. But I like, I was flummoxed. Like, are you kidding me? And so

Scott Benner 35:27
you took that you took that as a bad diabetic, not just like, oh, my gosh, you have so much candy in a drawer. Yeah, yeah,

'Veronica' 35:33
you're bad diabetic. I mean, I've heard it called patients that diabetics frequently so to their faces. Oh, no, behind their back. My mantra is, there are no bad diabetics, we're all just trying to keep ourselves alive. There may be some that are actively trying to kill themselves, but they're on the installment plan, if you will, but she went and got the doctor and was like, You're not gonna believe this. Come look at this. And he picked his head and looked in my desk drawer and looked at me and goes, No wonder you're so happy. And I was like that right there is what makes a good provider that understands that life is not over. I still have my favorite candy as long as I'm eating it in moderation and not going hog wild. Which I'm not always great about between the ADHD and just having a dysfunctional pancreas. But, so yeah, I

Scott Benner 36:30
like he overtreated a lower two.

'Veronica' 36:34
I've retreated some lows and maybe even some highs.

Scott Benner 36:40
overtreated highs with candy?

'Veronica' 36:42
Well, you know, you crave sweets when you're hot. Yeah, that's interesting, until you get too high. But he gets it. However, he's been in practice 30 or 40 years. He's not done anything for himself in the practice. What does that mean? I'm sorry. Like, he doesn't do the prescriptions. He doesn't like the the MA's, write the prescriptions, okay, and send the prescriptions and everything. So he just signs off on everything. He doesn't understand how the pump technology works. And so even the other day, I gave him a pump start order form. And it was completely blank. And I just got it back with a signature on it. No, you're supposed to fill it out. He's like, Oh, I trust you to do that. You got this, you know what you're doing? And like, that's all well and good. And I certainly would not trust him to do it. But that's not in my scope of practice.

Scott Benner 37:38
Is that lazy? Or is it just inadequate understanding? He understands

'Veronica' 37:42
because he wears some that he kind of wears the technology he wears, he wears a five but in manual, so he understands early pumping,

Scott Benner 37:52
there's an endo, who has type one diabetes, doesn't really understand how to use the technology. Exactly. And is basically like what, like, I don't know, like just the person who like comes in and waves and says the nice stuff to you and then sends the nurses chips, and then tells the nurses take care of the rest of it. Yep. Have you ever heard him give people advice as he helpful to people with

'Veronica' 38:17
their diabetes? Um, it depends on the day. He can be. And he has some things that he says that I think are helpful, like, I can't take your diabetes away. But I'm gonna have you talked to NAME, and she'll help you with some of the technology that can ease the burden a little bit. Yeah, diabetes sucks. Like, I've heard him say that a number of times. So he, he gets it from, like, having lived with it. He's also trying to change the practice a little bit now that it's been acquired, doing less with diabetes, and more in some other endocrine areas,

Scott Benner 38:54
because they're more they make more money on it, or,

'Veronica' 38:57
Oh, I still can't figure that out. It's weird. Because people I mean, endos for diabetes are hard to find very hard to find they're horrifically under compensated because, and this is the thing that we're finding since the acquisition is that the managing diabetes from a provider standpoint is very labor intensive. It takes a lot of time, if you're going to pour over the data the way you should and that type of thing. But not just pour over the data, forget the data. If you're talking about DME orders, ongoing prescriptions all the time, it is way more labor intensive than any other. There's there's nothing else like it. Yeah, even CPAP supplies aren't that labor intensive. I

Scott Benner 39:48
understand what you're saying. I didn't think of it that way honestly prior but there's more to understand there's more to explain. There's more paperwork to do more getting people for on the devices. Send, make sure they have their insulin and all this other stuff that and you're not being paid for that. Right?

'Veronica' 40:05
Yeah. So that's why the company that I work for puts these point of care specialists in the office to free up the time, so the doctor doesn't have to explain the CGM. I go in and do that for him. And we'll even put it on if I've got a sample to put on. But he relies on me for all the education. And I'm not trained

Scott Benner 40:29
for that. What do we really need the doctor for? I mean, maybe except for oxy. But like, what are we? What are we? What are we really, if they're just glad handing you coming through and then somebody else in the office is doing all the work on the paperwork side and training you on the stuff? Is the doctor just there because they need to be because we need that degree? Yeah. That's all very uplifting. I cursed the moment I thought to make this series by the way.

'Veronica' 40:55
I'm sorry. Like, there's there are glimmers though. Go ahead. So there's there's glimmers of positivity and hope. Of course, my story hasn't given many of those glimmers. But like I there's some other things I'd like to see change. For example, diabetes educators, from what I understand of the certification process that they have to go through. They're only tested on some very antiquated medications. And most of it is about type two. They're still talking Pio glitter zone, they're still talking NPH and regular

Scott Benner 41:37
wait in the States. Ca

'Veronica' 41:41
for the series, CDC is exempt from what I have heard, I haven't taken the exam yet. I'm also in school for nursing degrees, so I can become a CDE. But that's a whole nother story. I mean, because I'm pretty much doing it. Now. I add live as I go, which is really wonderful. But that's part of the reason I'm all about experimentation. And I say find what works for you. Because each and every person is unique. Each and every body is unique. And so we know what works in general. And the doctor says this all the time. We know what works in general, we just got to find out what works for you. And that's why he's pretty laissez faire, when it comes to Oh, it doesn't matter what you put on the pump start, you know, it's close enough, we'll fine tune it as we go. But when we're talking diet, I'm talking to people and I'm like, figure out what food does to you. And then I say, okay, so figure out if eating your food in a different order helps your blood sugar. And I then I got the glucose goddess and say, Okay, try this and see if this works. And they look at me like, Where

Scott Benner 42:48
have you been all my life? Yeah, just changing my digestion might help this like my god. Thank you. Yeah, yeah. Are you in nursing school right now? Like, where are you at in that, in that time?

'Veronica' 42:57
Finishing up my prerequisites for a nursing program. Okay, so I haven't gotten in yet. But I've been feeling pretty positive about it. Good for

Scott Benner 43:06
you. And then how long will you be in? In the nursing program? Oh,

'Veronica' 43:10
I'm just, I'm all about collecting the associate's degrees. So it'll be an Associate's in nursing. I should I mean, I'd had enough hours in this endocrine clinic that

Scott Benner 43:20
should be eligible for the CDC ces test, right? Well,

'Veronica' 43:24
I think you have to work in nursing for like, two years. So I'll have to, you know, put around and do something until I can sit for it. I can't. I like I feel like we could have a lot of other people encouraging people with diabetes. Not maybe not necessarily CDC es, but people with diabetes have a lot of knowledge. There are no dumb diabetics.

Scott Benner 43:46
You do pick up a lot as you go. That's for sure.

'Veronica' 43:48
You pick up a lot as you go. But there are no dumb diabetics. Unfortunately, it is a game of survival of the fittest. And if if you're not able to, to make the right choices for your blood sugar, you don't really last as long. The

Scott Benner 44:05
fittest you mean as much as being able to, like do the things over and over again, every day that you need to do. Well,

'Veronica' 44:11
I mean, like, what I mean is the fittest from a, a smarts standpoint, if you're not smart, you're not surviving. Oh,

Scott Benner 44:21
I think I get what you're saying. So, if people are challenged by the process of managing diabetes, like intellectually challenged by it, yeah, and they can't rise to the task, then they're gonna have more outcomes that are or are bad, and that really could shorten their existence. That's what you're saying. Absolutely.

'Veronica' 44:39
I mean, I knew guy. I don't. I don't know how much of the story I really know. But he got it from when I was growing up. He was having a low blood sugar and thought it would be a good idea to unfreeze his pipes with a blowtorch

Scott Benner 44:56
during his low blood sugar. Yeah, let's

'Veronica' 44:58
just say that didn't end well.

Scott Benner 44:59
I don't understand what's alright. Well, what the hell? I mean, I'm really stuck back on the drunk Doctor handing out the oxys. Like, it's really crazy.

'Veronica' 45:12
It's wild. It's, it's been a wild ride. But what I would like to see back to the CDC, yes, I would like to see some more specific certifications. So when I became a nuclear medicine technologist, you got your certification, and you were a nuclear medicine technologist. A few years later, they came out with some specific certifications. So you could specialize in cardiology, or PET CT, you had these areas of specialty. And I would love to see that with the CDC. Yes. So that you have people who are a diet specialist, or an exercise specialist, or a technology specialist, or type two specialists where you still have to qualify for the entire thing. But it's an extra step to prove that, you know, more than the average bear about these different topics.

Scott Benner 46:03
Yeah, that would be a big shift in how it works. Because then you have to find a way to build for those things, too. Right? Because that's what I mean, they don't, not the doctor, I'm saying that the industry itself, like, they'll come up with new subsets of, I don't know, job titles, if they can bill for it, you do see that moving that way, a little bit with like, nurses, right, like they're more training some nurses for in very specific things. Yeah, you know, so that they can say, oh, you know, this person needs this attention from a will have that person go through and do the training or whatever with them, then that's the thing we can build for. If that is really kind of how they think about it. They think about services as as billable time. Right. Yeah. I don't even know. Like, that's, you're pretty far away from getting that accomplished. But I know, I know. And I've

'Veronica' 46:53
been told that you reminded me of something that the first provider that I worked for, she had prescribed me Jardiance. And so as we came out of COVID, I had an incident where I was just, we were coming out of COVID. And I went outside and was outside all day. And but it was one of those cases where you can't take your mask off your face. And so I was way under hydrated, and I ended up in New glycemic DKA I had no idea I thought it was having a heart attack. And because she had put me on this, and she had told me but I completely forgot. I do think that when Doctor, or any provider prescribes something that's off label that they need to reiterate at every appointment. Don't forget, you need to stay hydrated, or you need to Don't forget you're using new 500 and a pump, you know, because those reminders, save lives. So

Scott Benner 47:52
you were on Jardiance which made being dehydrated, more dangerous. CHARNY

'Veronica' 47:57
it's is contraindicated in type one, especially when you get dehydrated it It lends itself to you, glycemic DKA. Why did she give it to you? blood sugar control and weight loss. And it was great for both of those. But I forgot to stay hydrated. And I honestly thought I was having a heart attack. But then when I got to the ER and the doctor was like, Oh, you're in DKA. And I'm like my blood sugar's to 12. Like what gives? And it wasn't until a month or two later that I put two and two together and was like, oh, it's the Jardiance that's what it was. But I bought myself a heart cath because my when when you're in DKA, or you leaked your opponent's, which is a thing that's released when you have heart damage, and so I leaked your opponent's and because I went in with heart symptoms, they were like, You got troponin, so we got to do a heart cath. But I've been worried about my heart for years and so I got the plane Bell health on that. So I was I was thankful for that whole experience in the end. Did

Scott Benner 49:00
a doctor you know it's so funny. I find myself saying that a doctor tell you but the more of these that I i do I'm like ah, it's a difference. But But did the doctor tell you that the Jardiance had was the reason behind what happened to you is just something you suppose I

'Veronica' 49:16
don't remember if I've had a discussion with her or anybody else about it since but the hindsight is 2020 and I go oh no, I know that that's exactly why that happened. Because I was warned about it went both way before it happened that if if you're not hydrated enough, you can go into DKA and you won't even know because your blood sugar will be fine. Yeah

Scott Benner 49:38
10 Side effects of Jardiance medication commonly used to treat type two diabetes and some heart problems common giardia and side effects include UTIs fungal yeast infection on your genitals that's fun, more serious giardia and side effects include dehydration, low blood sugar and serious infection. ketoacidosis too much acid in the blood is also possible but rare. When

'Veronica' 49:59
I had that 19 A one C, I had a low while in the ER with the dka. And they didn't believe that it was low. And my doctor, my endo at the time was nearing retirement and how only seen that, like two or three times in his career, and he's like your body is just majorly stressed out. And so my body does seem to want to boot me into DKA quicker than most. But that was my first time since being on a pump that I went into DKA. So it's not bad for 24 years of something. Oh, how do

Scott Benner 50:36
you knowing what you know, and having seen what you've seen in doctors offices? How do you moving forward take doctors seriously. I realize that everybody's not like that. And probably like, a using Doctor giving up is probably not the norm. I'm not saying that. But like, every day, you know what I mean? Like, how do you make the leap then?

'Veronica' 50:56
So I have a theory about that, or a sneaking suspicion? I've been trained since since age 12 that I'm responsible for keeping myself alive. And the doctor I currently work for will tell. Well, he told me that caring for type one diabetes is 90%. Patient led and 10% Doctor Yeah. And I would say it's, it's even less doctor and more educator or education. We don't relate to MDS are DEOs like other patients do. And so I've learned that I have to tread very carefully when I'm dealing with doctors and other specialties or PCPs. Because I've been taught that I am responsible for keeping myself alive. I am very attuned to what's going on in my body. Each of my shoulders has been frozen at different points in my life. And both times I went to a doctor early on and said, Hey, I think my shoulder is starting to become frozen. What are we going to do about what are we doing about this? And they're like, no, no, it's not frozen. And then six months later, I go back and see them. Oh, yeah, now it's frozen. Let's get you into physical therapy. I think cardiologists and are used to playing savior, you give the patient this pill, they take it, everything's better. diabetes doesn't work like that. And, and people living with type one have a very different relationship to all doctors than other patients. Does that make sense? It does.

Scott Benner 52:34
And it's something I've noticed, you know, by having these conversations, too, that I just interviewed a doctor the other day, we really like straight, straight guy like good stuff, like straight laced guy like thoughtful has type one is a peds, Endo. And, you know, still, like some of the messaging from him was like, you know, don't expect too much from your doctors. And, you know, it's interesting that the way you put it I agree with it's, you know, most things that you go to a doctor for are sort of finite. It's like, you go for this thing, and I'll give you a pill and it'll, you know, take it for eight days, and they'll go away. Or, you know, you have hypothyroidism take it forever. We'll test your blood sugar every test your blood every six months, make sure we have your dosing, right, like very, like kind of finite stuff like that. Yeah, there's no world where you're like, Okay, well, every day, every time you open your mouth, we're going to change the dose. And you're gonna have to figure that out on your own. So doctors aren't prepared to handle that. Right? So the ones that you get lucky when you get lucky, and you get one that is that's maybe more random than that not? Yes, yeah. Yeah, I hear. And for reasons that you brought up earlier, because there's not a ton of money in it, you need a lot of time to put into something to help them with their diabetes. Maybe they're not going to put that effort in to begin with. Right? Yeah. And some of them are high as a kite.

'Veronica' 53:57
Hopefully not many,

Scott Benner 53:59
what a great story. Franca. Thanks for coming on the show. This is terrific. I really do appreciate you doing this seriously, because my pleasure. First of all, no one listening should be like, Oh my god, I gotta go find out if my doctors you know, smacked out of their mind or not. I'm assuming most of them aren't. But you know, what? Day drinking, you know, alcoholism, functional alcoholics. Definitely a thing. You know, people using drugs to get through their days is a is definitely a thing. And why would it not also include doctors, I guess? Yeah. Doctors aren't immune from. Right. So just another one of those things you'd like to imagine. isn't happening. Yeah, like I get it. When I'm going to get new tires and the kid at the tire place is stoned. I'm like, Okay, I understand it like it's okay. He'll be able to get the lug nuts off. I'm alright with this. You just don't think about it. And you don't I mean, like I know the kid getting the carts at the grocery store is just a little high. I'm okay. Yeah. Yeah. Like I understand that I get oh well. I'll help. I appreciate you doing this very much. Is there anything we left out that we should have talked about that we didn't?

'Veronica' 55:04
I think the other thing I'm I want the whole world to know is that it's not a test. It's just a check. We're not testing blood sugar, it is not pass or fail. It is just information. And it is information about what's happened in the past. The only thing you can do is react and change going forward. You cannot change the past. So keep looking forward. You know, now we've got the arrows with the CGM. And that's great. Can we please stop calling it a test is the verbiage bother you that much to gauge? It really? Does

Scott Benner 55:40
he tell me why?

'Veronica' 55:43
Because it's not pass fail. And I feel like probably I've been called a bad diabetic too many times. And you heard me say it earlier. There's no bad diabetics, we're all trying to do the best we can. And for the most part, the ones that are not doing real well haven't been properly educated by their doctors, and there are a few out there that don't care, don't give a rip. And that's on them. That is their choice. There's no need to shame them for that choice. Like that is on them. Yeah. That is not your responsibility. It's like, if they want to live that way, they're gonna live that way.

Scott Benner 56:23
Is that something you take on yourself, though? Because like, I don't know, I don't own a pool. But if he I know somebody who does, and you have to test your pool water. Now nobody's thinking like, Oh, I'm gonna test my pool water to see if I've passed or I've failed. Like, is that? Are we just not commingling thoughts? Like, I get the idea. I know, you don't want to be judged every five seconds. And that a number is just data. And I completely agree with you. But I mean, if someone were to call it test your blood sugar, like, why would that set you off? Is that because of past experiences you've had you think? Probably.

'Veronica' 56:56
And I just I think that words matter and how we talk about it matters that I don't want to feel like I have to do 10 tests a day if I'm not wearing a CGM. And I feel bad for people that have test anxiety. What's funny is, as I'm in school, I love the tests. I want to know where I'm at. I don't want to know if my blood sugar but hey, when I'm at school, yeah, I want to know how I'm doing. But

Scott Benner 57:23
also Veronica, you know, there are other people who aren't bothered by the word, right? No,

'Veronica' 57:27
I know, there aren't. But I do. I feel bad for anybody who hasn't really thought through it and processed it and start seeing that, oh, it's a test. Oh, I got another I got a test again.

Scott Benner 57:40
Can I ask a question? If I say to you, hey, Veronica, you gotta check your blood sugar. And then you check it? And then it's 250. That doesn't feel like a failure to you? Because I said check in not test, you know, saying, like, what's the difference? I don't understand that. It feels like just a word to me. But I don't know. Because I also I'm not in your position,

'Veronica' 57:57
I think because it's not pass fail. Like it's not, there's no grade, it's you're just checking to see the status.

Scott Benner 58:06
It's not, you can't just be testing to see the status. So yeah, I don't know. I feel like I'm coming off as difficult. I don't mean to be because I completely agree with you. So yeah,

'Veronica' 58:16
I'm a verbal processor. And I haven't gotten there yet. And you're asking the right questions to get me there. I'm

Scott Benner 58:21
just I don't know, I it just bothers me. It feels like to me that something happened to you at some point. And now you have an unkind relationship with the word in this context. But I mean, there are plenty people who don't. And so that's where we get into this weird thing with like, you see people online, like don't call it diet, like don't say, I'm diabetic. That was the thing for awhile, people like, don't call me diabetic. I'm not diabetic, I have diabetes. I gotta be honest with you. I don't see the difference. So like, you don't I mean, well,

'Veronica' 58:50
I will say that my husband worked with children with autism for a while, and he's like, they are not autistic, that does not define them. I am not defined by my diabetes. So I occasionally I will say, I'm diabetic. But typically, no, I've lived with diabetes for a hell a long time, and I'm over it.

Scott Benner 59:11
I think a lot of those words come down to like intent when the person speaking it to me like, I mean, I can, I can imagine a way where I could call somebody a diabetic in a pejorative way. But to just say that person is a diabetic. I don't know. I mean, I don't know. Like, I am not sure just because I don't know how to like feel like I've been overweight in my life. If you would have said to me, Scott's fat, I would have been like, yeah, I am. You know what I mean? Like, if you were to call me a fat person, I would have said, Oh, that's accurate. I mean, I wouldn't have liked it. You don't I mean,

'Veronica' 59:47
I think there's some stigmas with diabetes that don't need to be there. And and some of those stigmas are more about type two but they get placed on type one. Okay. I'm so sick to death of people telling me what I can and can't eat. And that

Scott Benner 1:00:03
happens in your life the hell up. Yeah. People tell you, you shouldn't be eating something. Yeah, you can't eat that.

'Veronica' 1:00:09
You're diabetic? No, first of all, I

Scott Benner 1:00:12
am a diet badass. And secondly, you're not my doctor. So shut up, do not take them as verbalizing their thoughts. Like you can't eat that. I always expect is them in their brain going, Oh, I didn't think she could eat that she has diabetes, and then it comes out of their mouth that way.

'Veronica' 1:00:32
So I use it as an opportunity to educate and say, No, really, I can I just take a little more insulin for it. And so I do use it as an opportunity to educate but sometimes I do get snarky because, well, it's a pain

Scott Benner 1:00:49
in the ass to hear over and over again. That's Oh, yeah, obvious. Yeah. It's not your job to educate every person who notices you. Right? You know, eating. I mean, I take all your points. I am just playing devil's I hope people know I'm playing devil's advocate. But uh, yeah, get up. Get a note here from somebody's like, it's, you know,

'Veronica' 1:01:04
I love playing devil's. So I appreciate that. Yeah. You know, one of the ways I've described my diabetes is that the first 10 years I fought against it the second 10 years, I was like, Oh, I guess I was kind of resigned to it. Now. I'm leaning into it. And I'm making diabetes, my bitch. And I'm using it to encourage other people for you. That's excellent. So I'm trying, I'm trying. Yeah, no, I'm

Scott Benner 1:01:24
glad you got to that part. Seriously. What do you think stopped you from getting to it quicker.

'Veronica' 1:01:29
So I've blamed the diabetes on a lot. But I honestly now and thinking that the ADHD was, was like a legitimate thing. And I, I had no plans for my future. After high school. I didn't go to college right away. So I had a teacher in high school that said, she was the music teacher, and she was like, I will play at your wedding. If you accomplish a number of things before you get married. You need to travel the world, and you need to have a college degree. And you something else, I don't know what you need to know the person at least a year or two or something. And so I've like, I took that seriously. And I I traveled the world. Before I was 15. I didn't get my college degree ever. She still played in my wedding. So diabetes has not been a it's a weird dichotomy here. It's not been a limitation to me. But it has been such a limitation to me. I've limited myself because of it. But early on, I didn't when I was 14, I said, Hey, Mom and Dad, I saw this thing in this magazine about a mission trip. Can I do that? And they were like, sure if they accept you. And if you can raise the money, and I think they thought I wouldn't get accepted into this mission organization. Well, when I was 14, I went to the Amazon rainforest for eight weeks with a bunch of people my parents didn't know us. When I was 15. I went around the world, most of it on the Trans Siberian Express, flew from the US to Ireland to Moscow, took the train all the way across Siberia, even went in a Siberian prison at one point. And then on the other side from Qatar. It was Khabarovsk flew to Anchorage, to San Francisco and back to the east coast. But while you're doing all that you're not managing your type one really soon. Okay, high school, early years were were okay. It wasn't until I mean, later in high school, that was early high school later in high school, it started to fall apart. First college I went to I ended up in DKA. And, and the doctor in that other state was like, We need to get you on an insulin pump. And I went back to my home state and my regular endo was like, No, you don't have good enough control. And so I went through that for a couple of years until I moved away from my hometown, you know, 10 states away or something, and ended up in DKA, twice in six months. Got myself an endo. Who was like, let's get you on a pump yesterday. And then, and then I got married. And now I'm stuck happily stuck, but stuck nonetheless, in this state, and with a bunch, you know, I've had great endos and not so great. And I was here in my current state, and it's been a

Scott Benner 1:04:23
dream. Well, it's quite a journey. I appreciate your sharing it with us very much. My pleasure, sincerely. Thank you. Hold on for me for one second. Okay, absolutely.

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#1163 Lip Drill

Scott Benner

Kim is 47 years old, diagnosed with type 1 at 24.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends, and welcome to episode 1153 of the Juicebox Podcast.

I'm speaking today with a married couple Raya and Adam, they have three children. One of them has type one diabetes rival also has lupus, and possibly a thyroid issue. Her mother had hypothyroidism, their child was diagnosed very early, so we're going to be talking about everything from breastfeeding to what they're doing now. Please remember while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. If you'd like to help with type one diabetes research and you're a US resident, please listen up. The T one D exchange is looking for you. That's caregivers of type ones, as well as type ones themselves. All they want you to do is take a short 10 minute survey. And that's it you'll be helping with type one diabetes research, T one D exchange.org/juice. Box head over there. Now you'll be done before you know it. Don't forget to save 40% off of your entire order at cozy earth.com. All you have to do is use the offer code juice box at checkout that's juice box at checkout to save 40% at cozy earth.com.

This episode of The Juicebox Podcast is sponsored by ever since the ever since CGM is more convenient requiring only one sensor every six months. It offers more flexibility with its easy on Easy Off smart transmitter and allows you to take a break when needed ever since cgm.com/juicebox. This episode of The Juicebox Podcast is sponsored by touched by type one touched by type one.org. And find them on Facebook and Instagram touched by type one is an organization dedicated to helping people living with type one diabetes. And they have so many different programs that are doing just that. Check them out at touched by type one.org.

Riva 2:15
My name is Raya. I am a full time mother to three kids under the age of nine. The oldest is neurodivergent. Our middle is starting kindergarten. And our baby is two and he is our type one.

Scott Benner 2:36
So you're tired. It's a lot. Yeah, no kidding. Give me your oldest stage eight, eight. Kindergartens, what five.

Riva 2:47
She's nearly six. Happy birthday. And two.

Scott Benner 2:51
Okay, who else is here with us?

Adam 2:54
And I'm Adam, I'm Ravis husband, I'm the dad to all these three kids, and also lacking in sleep. I have a background in biomedical engineering. So I've really gone deep on a lot of details on the biology and the math. So that's kind of my role in this.

Scott Benner 3:19
How are we going to refer to your kids just we're keeping their names out of it, or

Riva 3:23
I'm really torn.

Scott Benner 3:27
Well, for now, why don't we just say, type one, kindergarten and neurodivergent how's that sound? Sure. All right. Well, and if you get more comfortable, we can do whatever you want. So private fair to say this is all Adams fault, right? Like you weren't after him. He came towards you does blame it on me.

Riva 3:48
Thank you. Thank you.

Scott Benner 3:49
Every time I look at my wife, and she's uncomfortable, I think Oh, I did that to her.

Riva 3:55
Thank you know how things work.

Scott Benner 3:57
I saw her she looked attractive. I started talking to her and now look what happened. Oh my gosh. All right. The either of you have any autoimmune issues. And you know what I've decided when I asked questions in there for both of you, let's just go to reiver first, so you don't have to wonder who's going to talk? Perfect.

Riva 4:17
I have, I think a non diagnosis. I have had a couple of doctors float. The idea of something called incomplete lupus.

Scott Benner 4:35
What do they say that is?

Riva 4:36
It's lupus that can't be diagnosed with a blood test. But the symptoms match.

Scott Benner 4:45
What are your symptoms? I haven't

Riva 4:47
had a flare and a little while. So hair loss, frequent UTIs frequent upper right respiratory, very tired, anemic, itchy, like rashes. And it seemed to coincide with postpartum twice.

Scott Benner 5:12
Okay. How long did you have postpartum for?

Riva 5:15
And I'm actually saying postpartum not visa vie depression

Scott Benner 5:23
just the time after birth. Correct. Okay. Okay, so then it lasted for forever when did this come up in your life? How long have you been dealing with this?

Riva 5:37
Um, I guess I started first feeling like something was amiss about a year after our first was born

Scott Benner 5:50
about seven years ago and you don't have any other autoimmune stuff, celiac thyroid?

Riva 5:58
Again, thyroid has never been able to be confirmed. That blood that's been floated to me. Yeah,

Scott Benner 6:08
right. But let me let me jump in here for a second. So a lot of your symptoms are thyroid, like not that things don't overlap ever. But what do you mean, it's not comfortable? What's your TSH been when they've tested it?

Riva 6:19
It's been normal every time every year of my life.

Scott Benner 6:23
What's the number? I don't know the number offhand. So figure out the number because TSH is an is an interesting one. The range I think is, I don't know, four to 10. They'll call normal. But any good doctor will medicate TSH over two with thyroid symptoms. So you could have a TSH of five which would be crippling your hair would fall out. You'd be tired, you wouldn't be able to get rested. You might have skin irritations, all this stuff, and literally like Synthroid and like two weeks from now you'll feel better. And the reason I bring it up, not just because I've heard it from so many people, but because this exact thing happened to my wife. She had Arden her thyroid went bonkers. We took her to an endocrinologist. They heard all of her symptoms, tested her blood, came back and said, Well, it's not your thyroid. That lab is normal. But that was exactly the problem. So, Adam, you're good with bio or if you're good with computers, pull up somebody's blood tests while we're talking and we'll take a look. But if not, Robin No kidding. Get off the phone. Call the doctor. Find out what your last TSH was if it's over like two 2.1 Tell them you want to be medicated for your thyroid. I bet you feel better in a week. My

Riva 7:45
mom has thyroid. You're gonna start screaming at me.

Scott Benner 7:48
I mean, not screaming because we're you know, we're not married, so I'm not angry at you. It's so ruining my life. But do you think non married people are listening going? What are they talking about? Just fine people. Yeah. Okay. Where do you try right? So, what does your mom have?

Riva 8:09
Like? I don't know if she has hypo or hyper. I don't. She's on Synthroid. She's

Scott Benner 8:14
Oh, she's so she's got hypothyroidism. Did they ever call it Hashimotos this episode of The Juicebox Podcast is sponsored by the ever since CGM. Ever since cgm.com/juicebox. The ever since CGM is the only long term CGM with six months of real time glucose readings giving you more convenience, confidence and flexibility. And you didn't hear me wrong. I didn't say 14 days. I said six months. So if you're tired of changing your CGM sensor every week, you're tired of it falling off or the adhesive not lasting as long as it showed or the sensor failing before the time is up. If you're tired of all that, you really owe it to yourself to try the ever since CGM. Ever since cgm.com/juicebox, I'm here to tell you that if the hassle of changing your sensors multiple times a month is just more than you want to deal with. If you're tired of things falling off and not sticking or sticking too much or having to carry around a whole bunch of extra supplies in case something does fall off. Then taking a few minutes to check out ever since cgm.com/juice box might be the right thing for you. When you use my link. You're supporting the production of the podcast and helping to keep it free and plentiful. Ever since cgm.com/juice. Box

Riva 9:45
No. And there was a great just like a breastfeeding gynecologist at Chapel Hill. Oh, okay. said Oh it says Hashimotos

Scott Benner 9:59
well It makes. I

Riva 10:01
was really excited about that. But it came back and she said, you're fine.

Scott Benner 10:07
Yeah. So breastfeeding gynecologist is going to be the name of my first sitcom that I write. I just decided everyone would tune in at least once. They'd be like, what's this about? Yeah, it was the way you said it a crack me up. But, but yeah, just get the number, or have it or have it retested or whatever I'm, Listen, I'm not a doctor, I'm an idiot. But I've talked to enough people. And I've seen it enough in my own family. Like, for instance, when my son got Hashimotos, he got his only symptom. Besides looking back, he was probably a little like, course, like his his, his temper was kind of like off like his personality. And but his hair was falling out, no one noticed because he had long hair. And he didn't notice because he thought that was just the thing that happened. He had low iron, at one point that we had to pump back up, which by the way, has never happened to him again. And rash was his big one. So if his body heated up, he would say that his skin felt itchy. Like, you know, the first couple days of summer, when you go outside, and your body's not used to the heat in the sun, and you get that flush feeling for a second. Like that would come over him. And then he'd break out in hives, waist to neck, and they would itch incredibly. And the only way he could make it stop was to like, go out like it was November when it happened. Luckily, he'd have to walk outside without his shirt on until his body, his core temperature came down, and then it would just go away. So I don't know. I don't want to get stuck on this. But let's just say if this is it, I'd like a Christmas card. That's all. But I'm not giving. I'm not giving you my address it just emailed to me. What else? Anything else? Oh, we got your mom with thyroid. Anybody else in the family? I

Riva 12:07
mean, Adam will chime in that his mom had ever thyroid removed. But there's nothing else. Like you know, we got the insert, type one in your family. There's one person. I think again, Adam can chime in, but his grandfather had what everyone believes is type two. We have been told by you know, few people floated the ideas, a great person at trial net actually. She said, You know, we didn't know. Back then. If maybe someone had type one and died before. You know, that was really discovered and may have been called Type Two diabetes

Scott Benner 12:50
still. Yeah, Adam, I like it when she tells me what you're going to say. And then says it. This is my favorite part so far. It's good for

Riva 12:58
him. Yeah, I'm

Adam 13:00
used to it. I just nod.

Scott Benner 13:03
Adams got a great story that I'll tell you now about his grandfather. Nothing bad. Nothing bad is gonna happen to say anything. You've done enough. Okay. Couldn't go after a different girl leave her alone. So the pandemic things were limited. How long have you guys been together?

Riva 13:28
almost 25 years? Oh, wow.

Scott Benner 13:29
You've been married for 25 years? Um, no, we

Riva 13:33
got married about I think 11 There's not an about there's an exact number but we don't need to 13

Adam 13:40
Oh,

Scott Benner 13:42
my God. Remember when I said my favorite thing was gonna be when rival told your stories. Now it's when she doesn't know how long you've been married. Or have you cloudy? You have like brain fog. Definitely, all the time.

Riva 13:54
I'm so tired. Like, Sawyer didn't era just set his name, but he didn't sleep like a normal baby. You know, he's getting diabetes. And now he has diabetes. So you know, I haven't been rested. For I don't know, three or four years. Three. On

Scott Benner 14:15
Saturday when you make Adam get up really early and let you sleep. And you sleep. And you sleep like 12 hours straight because you do right?

Riva 14:22
That's an eight on my on my mornings off. You

Scott Benner 14:26
wake up and feel rested? I feel better than I normally do. Okay? But rested like that. You even remember that feeling? Even

Riva 14:36
if I was physically rested? You know, there's a new mental load that has changed how I feel. Adam, do

Scott Benner 14:46
you notice it? Like I used to? I'll read you a little bit and you can tell me if you're on board. I stopped recognizing my wife's personality when she had a problem with her thyroid that nobody was dealing with. Not that Your spotlight couldn't just be lupus, but I she was just different. And no matter how many times I tried to explain it to her, she, she didn't know what I was talking about, like she just thought, you know, this is how I am. But she wasn't like, I remember her starting to take Synthroid and thinking like, wow, watch her personality came back and, and her temperament, all different kinds of things. But I was wondering if you've noticed anything like

Adam 15:23
that? I mean, it's it's been hard to disambiguate what's been the newly diagnosed type one diabetes load, and any kind of effect a thyroid disorder might have. Yeah. So I think we yeah, we both changed a lot since the diagnosis. Have I noticed the change? Yes, but not an unexpected one. And I'm sure I've changed too.

Scott Benner 15:53
So for everybody listening, not just due to, I would warn against the narrative. The Yeah, but this happened. So this is expected because this happened, like, at some point, you should try to start expecting better than that. And because I don't know if that makes sense or not, I don't know if I'm being does

Adam 16:16
we get started to experience it.

Scott Benner 16:20
Also, by the way, congratulations on being the first person to say disambiguate on the podcast ever. Wait, it was amazing. Alright, so we got your backgrounds, telling me a little bit about your son's diagnosis. What did you notice first?

Riva 16:39
I just explained this to diabetes startup yesterday, so it's fresh. So your was it seems like a very typical newborn. And we brag to everyone that he was our easiest, baby. But he was a newborn. So you go into that nadir. When we came out of the three to six month kind of newborn period. We expected things to naturally sort of start to get better, easier. And they didn't. They started to get worse. Sawyer stopped sleeping. He did not transition to solid food over time, from probably six months to a year started to cry. All the time. Change temperament, went from happy to needy sleep continued to deteriorate. We started to take them to pediatrician more for your checks. No, they would check to see oh, is he teething? All the usual things they may check for? Yeah. He's fine. He's fine. He's fine. Around 12 months, his weight started to drop. And the pediatrician said, Ah, you're still breastfeeding. You know, you got to get some nutrient dense foods into him. Maybe breastfeed a little less. Had I breastfed him less. He wouldn't have been getting any nutrients.

Scott Benner 18:19
Because he wasn't gonna eat anything else.

Riva 18:23
He would try to eat sometimes not much interest in food. And we love food. We're like, our kids love food. And we were not novice parents. Yeah, right. And Adam kept saying, I don't think he eats food. When he would eat vomiting. We found out he had food allergies, milk, soy, egg, sesame, and they continue to mount foods that he would try. He would vomit or get hives.

Scott Benner 19:05
Do you have any food allergies or either? I do have shellfish. Is it hard for you to talk about him? Like he's a problem? Does it make you like while you were describing it? It seemed difficult for you. I was wondering why

Riva 19:22
because I'm we're both still so let down by the people who were supposed to be helping us keep a baby safe. We still feel really frustrated by the lack of big checks at these equipments. Urgent Care saw him when when he went to the ER for breathing problems. So many people had eyes on him. Nobody poked his finger

Scott Benner 19:57
and that went on for like six months.

Riva 20:00
Yeah, yeah. Probably about from age, one ish. Or maybe just before one. It's around Christmas time. And he was diagnosed the following summer. So six to eight months,

Scott Benner 20:15
when he was diagnosed, what was his blood sugar? And what did they say they thought is a once he was 472.

Riva 20:21
And Adam might remember, in the high eights,

Adam 20:28
it was eat something I can't recall exactly

Scott Benner 20:32
how close to comedy think he was. I think Lowe's,

Adam 20:37
he, I had picked him up a few times in the night. And he when he was crying, or whimpering and he was live. And this was a symptom we described to a doctor and I, we thought it was TV. I think at the time, it was probably low blood sugar. Yeah. And we thought maybe, okay, he's teeth pain. And so we would give them you know, ibuprofen, which is kind of like, full of sugar, the kids version anyway. So I don't know if that got us out of any kind of, you know, traumatic medical emergency medical experiences. But that was part of the symptoms we described. And I think probably very close. Yeah.

Scott Benner 21:29
But it See, isn't that interesting? It's another example of, like, lolling yourself into acceptance. Like, I mean, honestly, if, if it hadn't happened so slowly, right? Because that's what gets you if it hadn't happened. So slowly, if you would have randomly walked into his bedroom one night picked him up, and he was limp, you would have just gone right to the ER. Right? Yeah. But because it happens. So slowly, we start to accept it. It's the wrong word. But you know, it becomes normal. And then it's the same brain function that lets us gain weight slowly. You know, I mean, it's the same thing or make bad decisions slowly. We just, we get a little used to we cross that line, and then we wait. And then we cross it again, you just keep doing that, before you know it, you can't see that we're the first line was anymore. And you feel like you're in a place you belong. And and then that frustration? Have you talked to anybody about that? Right? But like, it's been a while, it's been a little while now. Like, I don't want you to feel mad forever about this. Because this, this happens a lot. I know it sucks. But you're actually one of the lucky ones. Because you figured it out.

Riva 22:40
I mean, I will say I'm one of the more hyper vigilant humans you might ever meet. And I don't get lulled very much. But it took us we were trying to put pieces together. You know, and I also am very intuitive, and are my gut and even Adam Scott doesn't have any intuition. We kept saying to each other, you know, in passing, something's off. And things not adding up. And we're intelligent people were educated, we have great social networks. So it's not to say that we were not trying to put a puzzle together.

Scott Benner 23:29
No, no, I don't, I don't think you weren't. I just mean that. It's the you stop seeing things. I don't know, it feels like you can stop seeing things for what they are because they so slowly creep up on you. It's the um, what is the frog in the pot thing, right, you can throw a frog in a pot of boiling water, no, jump right out. But if you put it in a pot of cold water and warm it up slowly, it'll sit there and happily die like that, that. I'm just always not that that was happening to you, but it happens to people. And so I just I bring it up in these conversations. So that, you know, people might stop for a second step back except, you know, look at their lives and go, Oh, we are nowhere near where where I thought we were. But the thing you're talking about? Listen, I have that to constantly thinking about things. What is that what's happening? It's not a fun way to live. But when you have auto immune stuff in your life that's kind of unnecessary. And even that like, intersecting each other in the house or during the day and going Did you notice that this happened? What did you think of that? And then having like a four minute conversation, then continuing to move on? I've, I've lived through that moment, a few 1000 times. So I definitely know what you're talking about. I just mean, You sound angry that nobody gave him a finger stick. And I understand why and it's reasonable, but at some point, I mean, but I took garden to the doctor for weeks about things and they were like, Oh, it's this it's that it's the Hand Foot and Mouth is came back. That never happens. Like the doctor who's a friend of mine actually said, that never happens. That's weird. And then we just kept moving. I called him again, I was like, hey, you know, Arden just had a bowel movement. And I was able to with my fingers, crush it into dust. Oh, she's just dehydrated. Try this. But I mean, think of that explanation, like there were like pebbles, that if I squeezed both sides of the diaper just exploded into dust. Does that sound like just dehydration to you? Right. And so these things happen on and on and on. But in the end, no one's looking for this. And I've seen a number of years ago now. One organization was it beyond type one, one organization got it in their head that they were going to contact every pediatricians office in the country and give them literature about this. And they tried, and they got volunteers and it fell apart eventually, you would think it's such a simple thing. But it's credibly difficult to do, you know, to make the do that advocacy. So this is a great way to bring out that story. And hopefully people will share it and not go through what you went through. Because your son, you know, really could have had a very poor end, if somebody didn't figure it out. But they did. So now you're breastfeeding, a kid a baby with diabetes a year and a half old with diabetes. Is that right?

Riva 26:28
Yeah, he's two now. And I weaned him. I think in May.

Scott Benner 26:35
Okay, about four months. Yeah, yeah. So how long did you do breastfeeding with type one, four.

Riva 26:40
So he was diagnosed a couple days shy of 15 months. And he was March April. Like 26 months? I think when I read him.

Scott Benner 26:51
I was that was it hard to Bolus for? Was he? Amy, do

Riva 26:57
you need to chime in? Yeah, this this was pre agreed to?

Scott Benner 27:03
Adam, you're allowed to speak about this. And even though you have no intuition, I think you will be a reasonable person to talk on this subject.

Adam 27:11
Well, I appreciate the vote of confidence by both of you.

Riva 27:16
So

Adam 27:18
before diagnosis, or was feeding on demand. And that was the first thing we had to get our heads around to not do that anymore. So that was a tough transition, especially because, as Rob mentioned, he wasn't eating food yet. But once he started having insulin, he started eating everything. So that was a easier transition than we thought it might be. We talked a lot about transitioning him off of breastfeeding very quickly. But we decided that it would probably be really hard for him and Arriva to do that right away, especially after he's gone through this really traumatic week long hospital visit. So that was kind of the decision point to keep doing it. We revisited and since made around a lot. But Pre-Bolus thing became very key to maintaining any kind of breastfeeding regime. And so we were really glad we found the juicebox community and then that helped us with a lot of it.

Scott Benner 28:48
So the breastfeeding without a Pre-Bolus was shooting blood sugar to where

Adam 28:55
400 How quickly pretty quickly. The ask as I described arrive as we were trying to take an unknown are containing liquid or no quantity of it. And then unknown amount of carbs in the quantity. That's what we started with.

Scott Benner 29:21
We don't know what's in here. And exactly and did you always feel comfortable that he latched and and drank?

Adam 29:29
Oh yeah, he was he was a good you know, breastfeed her by that good little nursling he will always latched and Robin he were quite a you know dyad so the

Scott Benner 29:45
way we got around it. I gotta tell you, you're gonna use dyad on this podcast, you're gonna have to define it or you're gonna have trouble people are gonna be like a team.

Adam 29:57
A team just means two people on the team.

Riva 29:59
Do I just you know,

Scott Benner 30:03
I got people out there listening out go on there a dyad What the Hold on a second, they're Googling like crazy. So, so that So okay, so you, you know he's going to eat well. What's is it still difficult to make that decision the first time like we're gonna give insulin before food?

Adam 30:23
Well, we started looking at what the hospital was telling us to do. And it just wasn't adding up. For me logic wise. It's like, wait a second, you want us to wait until after he eats till his blood sugar's rocketing up, and then give insulin just didn't make any sense to me. So we started, you know, when we were like laying claim to inventing Pre-Bolus or anything, but we started getting the idea that, well, this isn't really a great idea. Bolus after eating. And then as we became more familiar with the juicebox community was like, Oh, this is kind of what, what, what makes more sense. It's like, give him some insulin before and if he happens, do more after isn't always taught them up, right? What

Scott Benner 31:22
allows you to hear what the doctor told you see what's actually happening and make the leap because I find that's where people get stuck. They see it may make sense to them. But they can't go against what they've been told.

Adam 31:40
Yes, on my end, it's delving deep into the biology of being really, really often and in that. And I guess at some point, you just got to believe that you know what you're doing. And that, while an endocrinologist knows how to manage all this, they're not in the weeds, like you're in the weeds. And you have to make decisions on the ground that they're never faced with.

Scott Benner 32:13
And private. How and how in the world. Did you allow this dollar to make this decision? Like, what did you What did you what? But But were you guys on board? Did you have a conversation about it?

Riva 32:26
I discovered juicebox when Sawyer was sleeping on me, in the NICU, the first night. I read a thread where like someone was asking for advice for their newly diagnosed baby or toddler. And everyone rushed in and said, Don't leave the hospital without a CGM. And listen to juice box. That's great. So when the I started seeing people the next morning coming into his room, and I said, I want a Dexcom today,

Scott Benner 33:01
how'd that go?

Riva 33:05
I think they thought it was really interesting that the sleep deprived person in a traumatic situation with a little baby was demanding to still breastfeed and to have a CGM. I was really empowered by reading juicebox all night. I'm glad. That's

Scott Benner 33:28
really I don't know, makes me feel. I don't I don't know how to explain it to you. We don't have a therapist here to explain to you how I feel. But thank you. You made me feel nice. I'm happy you found it. How did you find it?

Riva 33:39
I just Googled, really. And somehow, I'm not even on Facebook. But I got an account that night. Somebody said do this. Read this person? Yeah. And I know probably, I could guess I have theory of mind about how maybe that makes you feel. But it's the truth. You changed our lives. I'm

Scott Benner 34:03
glad. I'm glad I'm glad it's going better. And that you honestly that you started so soon. That's the part that makes me the happiest, because I've just heard. And I've just heard too many stories about people who get on the wrong path and takes you know, you get lulled into believing that's the right path. And then it takes years and and sometimes medical issues for people to wonder out loud. You know, maybe I should be looking at something else.

Adam 34:29
That's terrific. Good for you.

Scott Benner 34:31
You actually got them to bring you a CGM in the hospital. Now they

Riva 34:35
brought me a sample. That's cool. That's very cool. And no one knew how to place it. So they pulled somebody whose husband had when she came in. I was in the shower in the hospital room. And Adam, you know, stuck it on his arm and click and we didn't have the right phone for it. Adam found an old one image Word house, I will say from diagnosis onward like it was on for Adam and I, we just jumped into, like, let's do this. Right. Let's try to continue to make an awesome life for our family. It's not to say didn't push us down. We could pretty ground down by course.

Scott Benner 35:25
Yeah, that's pretty much to be expected. You know. And on top of that, we're not even talking about it. But me just said at the beginning, your oldest is neurodivergent. But what is that? What does that mean?

Riva 35:36
I was trying to think about how much of his story I would want to tell. Just to say multiple overlapping diagnoses. Intellect north of 99th percentile. percentile. Super awesome. High needs kid.

Scott Benner 35:54
Okay. They come with medical issues. Newly

Riva 35:58
Yes, yeah.

Scott Benner 36:02
Yeah. Okay. Well, so you were pretty tired to begin with? What makes you? What? What made you keep having children? I don't I'm not judging you. I'm just it's a I think it's kind of a reasonable question. What like, when you when you hit a struggle in the beginning, I mean, it slowed us down. I think we thought we were gonna have three kids. So

Riva 36:24
we love having a family. We wanted to build a family. And I wanted four kids. So we're stopping. It did slow us down.

Scott Benner 36:33
Do you want to just try one more time?

Riva 36:36
We are now we're unable to and we're all too old and poor now.

Scott Benner 36:40
Oh, poor don't even have enough energy to have sex? What are you talking about? Wait, how do we make the I can't do that. Nevermind.

Riva 36:51
What's your name again?

Scott Benner 36:51
Yeah, no kidding. Kelly joke sometimes. And she's like, what if we had another baby right now? It's like, I would probably die. I was. Like, I would just shut off. It's not the desire, like the thought of doing it is like kind of exciting, right? But I don't know where the energy would come from. I really don't. I mean, RT is home from college for a few months. And it's fantastic. But she's going back in like eight days. And there's part of me that's like, Oh, good. I'm having trouble keeping up with just the extra laundry. That might be a comment about her clothes. Being a clothes horse, too. I'm not sure. But but nevertheless. So you come home with a CGM. You find a phone you're running. You're seeing things so you get to be more aggressive with the breastfeeding because you can see it. That's kind of brilliant. Injections at that point. Yeah. Yeah. How long did you do MDI for a pen? Yeah,

Adam 37:51
it was two months. Not long. Well, we, they were really good about getting us the paperwork we needed, because Omnipod had just come out. He's on Omnipod. Five. But it had just come out a few months before that, and it wasn't approved for, you know, at the time, he was 15 months old. So that we had to get special permission to use it. And a few other things, but once that all came through, there was a backlog of training, and you have to do the training before you can use it. So we were kind of chomping at the bit. Even for two months. We were like we know this is gonna get way better. getting in the weeds on the epi pens come in point five. increments are not epi pens, but insulin.

Scott Benner 38:51
Yeah, units. You

Adam 38:53
probably remember Scott but the point five increment is not that accurate.

Scott Benner 39:01
And often way too much when there's smoke. Yeah.

Adam 39:04
And so we were doing the best we could. This is to parents hitting it with everything we could. Best days

Scott Benner 39:14
were 45% or what was the range we're trying for?

Adam 39:19
I mean, we're overachievers we wanted said

Scott Benner 39:25
that all you were shooting for him is 90% of what range? What was your level? What was your high in

Adam 39:30
with MDI? Yeah, I think driver got one day at 90%. And then

Scott Benner 39:41
yeah, you didn't hear me twice. She's gonna give it to you now. Go ahead, driver give it to him.

Riva 39:47
He's wondering what size ranges? Oh, so I think it's 70 to 180 70 to

Scott Benner 39:54
180. How many nights will he have to sleep on the sofa for that? What You've just done now, Adam. Yeah.

Riva 40:01
No, it's fine. Thank you for saying that. It's Okay Adam, you can you can still sleep in, you know, in

Scott Benner 40:10
the room. The room on the floor next to the bed. I don't know prop one sheet and a half a pillow. Now I'm just teasing you guys have actually, I I actually recognize your your banter from my wife and I like so. It's it's sweet. Like I don't I wonder if people hear it the way I do but I hear it is very playful and and, and loving actually. So. Yeah, yeah, you big dummy. Now. I don't believe we've shared with people you both hold a PhD in something. Is that correct? That's correct. Yeah.

Adam 40:44
She got hers first. Of course.

Scott Benner 40:49
No, I It's why I'm doing making fun of you. Because I imagine your IQs are like 150 And

Adam 40:56
that's not very nice to make honest people's intelligence. They're not smart.

Scott Benner 41:01
Oh, yeah, that's a good point. I didn't consider it but I you do make a good

Adam 41:08
we get made fun of a lot of just

Scott Benner 41:13
Yeah, is nothing this is gonna sound fairly elitist for a second, but I haven't. I've never said I have a fairly high IQ. I guess I do a good job of like, being blue collar on TV, because I am. But um, I've mentioned it in the past. Like, I was adopted by like, lovely blue collar people. I grew up very, very broken blue collar. But my, my IQ is pretty impressive. Probably not compared to yours. But I love it when I meet somebody who I think oh, I am dumb to that person. That's interesting. To real moment when you're like, oh, oh, I'm an idiot in this scenario. Like, okay, anyway, keeps me I like it. It keeps you from, you know, getting to fool yourself. Anyway, after we're done recording, we'll all compare IQs rather than when there's Oh, please, it's not much fun. First of all, there's a thing people don't want to hear about. And actually, my wife is the only person I ever met, like, personally, whose IQ is higher than mine. And I was like, Well, this is a good move. I'll get like this girl, because she can keep me in line. So, okay, so you go, do you go to a dash First you go right on the pot five. Right to five. Okay. And the what were the Basal needs at that point? You remember he

Adam 42:43
was prescribed point one? units per hour? One? Okay. When we were NDI was two units of Lantus per day, once a day.

Scott Benner 42:58
And so the pump worked for you was no trouble

Adam 43:00
is doubled our time and range instantly. Wow.

Scott Benner 43:05
Jeez, that's amazing. And you the algorithm works well for him. No, no. So how do you make it work?

Adam 43:15
So let's put a caveat on that. It works really well at night. And we sleep better for it. So huge when right there. During the day, it would pause insulin too frequently. And too long. My theory is because he was getting point one per hour. That's a rounding error to most users of the Omni pod five is my guess. And so he would just give him enough basil. And then he would rock it up when we feed them. So we run intricate Basal programs during the day now. And then flip them over to automate it at night.

Scott Benner 44:06
Good for you. You think when he gets bigger, it'll be easier. Oh, yeah. Yeah. There's part of me that thinks you're going to be able to rattle this off the top of your head but just if you can't specifically just generally like what is the Basal profile you set up for him that works during the day?

Adam 44:22
That's an easy question. It has heard we talk about it all the time and when the adjustments we make so he begins the day with what we call breakfast basil. And that is his so his regular basil rate now is probably point three or point four per hour. And he gets point nine an hour for three hours through the brackets that make sure that anything he eats doesn't send them

Scott Benner 44:55
out a ranch. Yeah. What's the time for that? What time of day is that? Three out was

Adam 45:00
530 to 830 in the morning, okay,

Scott Benner 45:04
where's the go after the point nine.

Adam 45:07
And then we stepped down to point 7.5 Over the next two hours because at that point is going to try to take a nap.

Scott Benner 45:19
Okay. But the foods still having some impact. Exactly. Okay.

Adam 45:25
So we still need to get insulin network up and feeding itself. Now

Scott Benner 45:33
do you ramp it back up for lunch?

Adam 45:35
Yeah, so we ramp it down for nap. And he gets point to an hour when he's sleeping. And then sort of at one o'clock starts, right, we start ramping it up again. And he generally wakes up between one and 130. And he'll have something to eat soon after that it doesn't wake up super starved, or like he's missed lunch or anything. But we usually try to let the Basal the head a little heavier basil soak in, and then we

Scott Benner 46:07
feel Yeah, that's amazing. You guys are doing a great job. You know, right. Thank you. Yeah. Yeah, like, I mean, it's nice to hear, but I imagine you're aware. How often do adjustments need to be made? As he's gaining weight? Time? How do you do it?

Adam 46:25
Yeah, so we usually find we have to go up his Basal rate a little, every few months. When he gets sick. We have other basil programs we run, depending whether it's a rhino virus where he needs more basil, or if it's a gastro virus, and we'll need less. So there's a kind of be adjustments you made. Yeah. And then also growth hormone. Which can really,

Scott Benner 46:54
and you're seeing things off. You're seeing that overnight, mostly. Mostly.

Adam 46:59
Okay. Sometimes we see it a nap, but mostly at night. Okay, he'll just kind of start going diagonal up not stopped for a couple hours. And we Bolus sometimes for that. It's getting really up there. But mostly we let the Omni pod take care of it.

Scott Benner 47:18
I wish I had you guys slow march. I wish I had you guys. When Arden was to see me back then with those half unit insulin pens and or syringes and juice boxes everywhere and testing while she was napping constantly and staring at her while she was napping and wondering what the hell was going on with that stupid meter and nothing else? Yeah, I wish somebody would have. I should have made this podcast sooner for myself as well. I was thinking while I was listening to you, because you're having him as crazy as it sounds. And it does sound crazy. You're having a much better time at this than I did. So.

Adam 47:55
I'm glad we think that all the time. We're very grateful for the advanced medical devices that we have. We think how much harder it would have been even a year before.

Scott Benner 48:05
Oh, no kidding. It's you. Jeez, I wish I still had that old meter. So you could say it was my all my gear was a meter and test strips. And these just needles that were everywhere. That um, we still have some by the way. Like, like, if we ever give Arden an injection like we're like, Hey, I'm not sure if your campsite bad or not. Like let's try to inject here. I'm working from needles that we bought, I mean, roughly 11 years ago that are still in a drawer where they work great, by the way. But um, yeah. So every time I pull one out, it's like a, I get into a time machine and go back to a time when I was just panicked constantly. And really exhausted. So. Okay, so Omnipod five is doing great for you overnight. You're using it in manual mode during the day. My last question about that is was there a learning curve of switching out of manual into auto and out of auto into manual?

Adam 49:07
Yeah, we tried running it in auto during the day when we first got but we would get these really big spikes when he was eating. And so we kind of decided, okay, well, we at least have to put it in manual during the day and we'll do the prescribed Basal rate. And that allowed us to make these intricate basil programs that we use now with breakfast, basil, Sig basil, and all that. So,

Scott Benner 49:38
Adam, what about when you're coming out of the daytime out of the manual? And you've been using much more basil than the algorithm expects? Do you have trouble with Lowe's coming out of manual into auto or have you figured out how to do that pretty well? Yeah,

Adam 49:53
it seems to be pretty good at it. We haven't had much trouble with that. Again, overnight. ate it kind of depends on the night of he's gonna get growth hormone.

Scott Benner 50:05
Yeah. Okay, so it's not been a probably, yeah, not

Adam 50:09
really not a persistent one. But maybe Robin wants to chime in on a little bit more on that.

Riva 50:15
But I don't really understand the question. So

Scott Benner 50:17
my thought my, what I'm seeing with some people is if they do manual during the day and then go into automation, the automation, if they come out of it with a big like, insulin on board, but number, the automation can't stop a low that's coming. So you have to kind of learn when to flip it back into auto. And I was just wondering if that was the thing. It doesn't sound like it was a problem for you.

Riva 50:40
I mean, we, we, you know, we're calculating, you know, what's the IB? What are the cops on board when we're putting them to bed. But sometimes we get it wrong often. So we're putting a sweetheart in his mouth while he's sleeping. Or, you know, we were watching it if he's gonna go low. We just, you know, treat him and keep letting Otto do its thing.

Scott Benner 51:08
Ya know, it sounds like a good plan. What am I not bringing up that I should be? Well, what do you want to know about breastfeeding? A beedis. Baby.

Adam 51:27
I mean, I could explain how we kind of got to a point of being able to

Scott Benner 51:31
Bolus well for it. Yeah, please.

Adam 51:35
So in the hospital, they told us that breast milk has two grams per card, per ounce. And so that's what we went with for a while. And trial and error. Most of the errors showed us, that wasn't the case at all. Even when you'd have what Rocco would say, an ounce a small amount, he would go up really quickly, to idle up or straight hot. And so we gradually started assuming it was more carbs per ounce. And Dr. I got better at estimating the number of ounces that she had available and that he would eat. And so we gradually got to a number of five grams per ounce, okay. And that's all really dynamic, too. We have to go with an average. There's lots of people that's just to get your breast milk analyzed for the number of carbs and in but Rive can chime in and tell you how dynamic that number actually is. So even getting tested once it's just a snapshot in time. That

Scott Benner 52:48
is, is it impacted reiver By what you eat. Or no,

Riva 52:54
I don't know that carbs specifically, are impacted by what I eat. But I can say that generally, the composition of breast milk is at Adams using the word dynamic. So where that's often used, breast milk starts out very high fat for a newborn, it'll change over time. The milk that's at the front of your breast is higher in carbs, and lower in fat. It's called the for milk. Okay. There's been milk that if the baby would keep eating, it's called Mind milk. So that's got the fat. If the baby is sick, the milk becomes fattier iron protein. Yeah. It develops antibodies that are specific to a baby's a virus a baby may have.

Scott Benner 54:00
How do it know? How does it How does it know what's I mean? That's crazy. feels it feels a little crazy, but that's amazing.

Riva 54:09
That's amazing. Yeah. There's receptors in the nipple. Adam wood. I don't know. Maybe you know more about science of it. But that when the baby's when the virus in the baby's mouth was transferred to the nipple. It changes the milk over the course of a couple of hours and days.

Scott Benner 54:31
That's insane. He actually went to a feed Sawyer, he just sent a note. So

Riva 54:35
okay, I was going to ask him to go feed him.

Scott Benner 54:39
So somebody will do it. So you're telling me that that's insane. So the virus that's in a baby? The nipple senses that changes the milk to help the baby?

Riva 54:51
Correct. It's like personalized medicine. Oh,

Scott Benner 54:56
I didn't know they could do that. Yeah, what else can new policies that I don't know about. I'm not gonna Google that guy ever. Yeah. Right, what'll happen? So that's insane. It really is. Can I ask, like a mom question? Your middle one? Do you think? Do you worry about that the, like focusing on needs that, then you run out of time, oh, if your oldest needs things and your youngest needs things, that your middle ones just kind of chugging along.

Riva 55:30
So she's our only girl, I did find out recently that siblings of kids with differences in disabilities are sometimes called Glass children, really, because for two reasons, one, prep, they may become fragile, you know, the idea that they may be not having their needs met. And then also that they report a feeling that their parents maybe looked right through them, you know, I looked past them, when they're growing up, we worry about all our kids in the sense that we want to walk with them on their journeys, and be the supports that they need. So some of them are in something called child centered play therapy. Some of them have their needs being met. In other ways. The best support we can give to her is to put her in public school and have her in front of opportunities where she can do her own thing. Nice, it's good for her, she loves it, it's a good fit with her personality to kind of be out in the world. Good.

Scott Benner 56:58
That's excellent. I think being aware of it's probably one of the best things you could do. Yeah, yeah. Because the example I always kind of fall to is even, even in families where there's no trouble data like that you can just point to easily. Sometimes you just have a kid who doesn't need as much help with their homework. And the parents give more help to the one that does, and you can later get reported back as they get older. Like, you know, nobody helped me with my homework. And they'll say like, I didn't need it. But that's not the point. That's not how it feels, you know? So sometimes it's just nice if your parents turned to you and are like, Hey, how's it going? You need help? Yeah. And there's only so many hours of the day. It's just Gosh, this amount of time just isn't enough time. Do you see a light at the end of this tunnel for you as far as time and effort goes?

Riva 57:58
Like I think Adam said, just recently, we've graduated ourselves from the quagmire to just a pickle to now. We were trying to figure out what's this season called? And, you know, Adam, the other day says, I've got it. This is the new normal. And it felt really good to think now we're just living.

Scott Benner 58:30
Yeah, just this, maybe every moments not going to be our and that you can do like you're really you guys have like a different rhythm now? I

Riva 58:41
think so. Yeah. Yeah. One of the main challenges we have now and I would say have had since diagnosis is that Sawyer is little, and babies and toddlers are annoying. It's a lot. His toddler newness is often harder to manage than his diabetes.

Scott Benner 59:11
Yeah. Oh, that's, that's kind of nice to know, don't you think? Right. Yeah. Yeah, that's that's very nice to know, actually. So the diabetes as it becomes more familiar, and your experiences build up, you start kind of knowing what to do more intuitively. It does fade into the background.

Riva 59:30
Yeah, I remember you saying that. Maybe you say it all the time. But you said on a podcast I listened to maybe one or two weeks post diagnosis. You said one day it just fades into the background. I think I really held on to that. And in the wee hours of the morning, when things were difficult and like you just said When Everything Feels like a nightmare. I just thought you know, event Really, this will be part of our lives. And we were already tuned into what I refer to as differences in disabilities, because of our oldest, we'd already become sensitive to parenting a child with the unique path. And we hope that this would sort of fall into some kind of rhythm to eventually. Yeah,

Scott Benner 1:00:27
I mean, and yours is positive rhythm to some people fall into a negative one where they just don't understand the insulin or, you know, and yeah, then that just becomes a completely different story. So your story is, it's so weird to say, because I know it doesn't feel like that probably was it's a real it's a success. You know, you have a success story here. It's wonderful. Honestly, I feel really good about it. You're too tired to feel good about it. But from the audio feel good about it. Good. Oh, that was back. That was nice. What, what did he was that?

Adam 1:01:04
Oh, I gave him iron bar. So it's got nuts and little bit of chocolate.

Scott Benner 1:01:14
Was that for a low blood sugar or just hungry? He

Adam 1:01:16
was trending down. So it just kind of, we're not in the treatment territory. It's just a good thing that I'll bump them up and be pretty even.

Scott Benner 1:01:28
This doesn't need insulin because of the situation.

Adam 1:01:30
Yeah, he's gotten kind of gastro budgie the last day or so. Okay, so we're trying to like, ramp down the basil, but I think we've got a little too much on right now. So he was just calming down more than he should have been a little heavy.

Scott Benner 1:01:47
Yeah, I've been. I'm trying a new algorithm with Arden. So I just put it on, like 24 hours ago. And I'm still doing a lot of staring, trying to, like, is this right? Do I turn this knob? Not yet? Maybe what is this happening? That'll go on for a couple of days, where we decide if we're gonna try this one for a while or not. But um, anyway, it's it's uh, it sharpens every sharpens my skills aren't like, why are we doing this? She's like, loop theory works great. I was like, I know, I'm like, let's just try this and see what happens. So you could always just now that they're just, you know, when you do DIY, it's there's just two apps on our phone, like it just shut one off and try the other one. And if you don't like it, you can just restart a pod with the old one and just go right back to what you were doing. So given Iaps a shot, and seeing how that's gone, which I can say on here, because nobody will hear this for like six months. So plenty of time to cover myself. Okay, like so let's get to the most important question. And I'll let you guys get back to your life. When you listen to the podcast. It's on two different devices. Right. So I get two downloads. It's not just one.

Riva 1:02:58
I read the transcripts.

Scott Benner 1:03:01
Oh, forget my question, then. You. Thank you for bringing that up. I never know who the hell is looking at this.

Riva 1:03:12
Mom's mom's.

Scott Benner 1:03:15
So you read the podcast.

Riva 1:03:17
I have to read it. Our kids. So our oldest is homeschooled. And saw us here. They're always with me. And we're pretty careful about what content they hear. And especially our oldest is, you know, understands everything he hears. So I read them on my phone. When I'm putting someone to bed. When I'm cooking, I have an open reading it bits and pieces.

Scott Benner 1:03:51
I'm not appropriate for your nine year old is what you're saying. I agree with you

Riva 1:03:55
listen too much. Oh,

Adam 1:03:57
I also try to make sure they don't get a huge heavy dose of diabetes. talk all the time. I

Scott Benner 1:04:05
think that's yeah, yeah, that's a good idea. I also don't think I'm appropriate for nine year olds in case any Well, that's who we were just being kind. No, oh, you're Canadian, I didn't realize

Adam 1:04:20
will apologize for that after that.

Scott Benner 1:04:23
explicitly and for hours. We're so sorry. We don't know why. But no, that's so cuz I that's the thing, right? That's like an expense for me. And, and it's time and I do it. And I'm like, is anyone looking at this? But I know I know people do. It's just so hard to imagine. Like for people who wouldn't think to do it, if that makes sense. But I'm glad it's there. That's great. They're getting better and better. I was looking into a new company recently who runs the transcript. And at the same time each transcript gets its own AI bot. And so instead of asking a question of the whole website, which AI doesn't seem to be up to steal, it is very good when you only give it a few 1000 words. So for example, Jenny and I didn't, what do we do a math of Basal insulin or ISF or something like that, where we just have like a super chatty conversation about how to set up a setting. And I've been messing with it. If you go to that AI and say, I weigh this much. And I forget what else you have to say to it like something very simple. What's my insulin sensitivity factor? Like what's a good starting place for it? It actually goes through the text and comes back and gives you an answer. Crazy. So yeah, so I have an imagination where one day you'll be able to go to the website and ask diabetes questions and get rock solid answers from out of the AI coming out of the tax. So anyway, that's all one of my long term goals that I don't tell anybody about. So anybody who's listening right now, don't bother going and looking because I didn't do it yet. But it's but it's happening. So Oh, I'm so glad you do that. Alright, so fine. So you can't just download them and delete them to help me I don't understand. Right? I don't really ask for a whole lot.

Riva 1:06:17
I can't do that.

Scott Benner 1:06:20
It's, we're on on to one of our best months ever. As we're talking. I'm looking at the countdown for the next 36 hours on Michael, I think we're gonna make it to a pretty cool number. So anyway, you guys were terrific. I really do appreciate this. Thank you so much.

Adam 1:06:36
Do you too? Yeah, no,

Scott Benner 1:06:38
no, it's my pleasure. It really is. Yeah, we're very happy to give back. And you definitely have this is a terrific conversation. So I mean, this is how the podcast grows, everybody gets done. And they'll say to me, like, we'll get on recording, and sometimes people will go, I'll understand if you don't use that. And I'm like, why? Like, I don't know what you're saying. I was like, No, how many of these do you think I've never used? Anything I've just recorded and going not that one? Not that when I'm you've pretty much heard every conversation I've ever had with people with diabetes. And, you know, everybody comes from a different perspective. And I think in the end, it ends up helping somebody so terrific. So seriously, yeah, I appreciate it. Can you hold on for a minute for me? Yeah. Great. Thank you. So

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#1162 Grand Rounds: Hodgepodge

Scott Benner

Scott and Jenny finish up the Grand Rounds series. 

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends, and welcome to episode 1148 of the Juicebox Podcast.

Jenny's back for another grand rounds episode and today she and I are going to talk about how doctors should be thinking about diabetes management, how to talk to you about using insulin, and so much more. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. If you'd like to help with type one diabetes research right from the comfort of your home, it's easy to do go to T one D exchange.org/juicebox. and complete the survey. That's it, it takes like 10 minutes. We're looking for US residents who have type one diabetes, or are the caregivers of someone with type one of specific and special note. men and men of color were boys or boys of color. Difficult to get that data. The T one D exchange thinks they could really help people if they had it. If you fit any of these categories, I'm talking about men, boys, girls, ladies have type one, you're the parent of somebody filling out that survey is a great way to help. And it's a great way to help the podcast, it also might end up helping you t one D exchange.org/juicebox. Today's episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter. This is the meter that my daughter has on her person right now. It is incredibly accurate and waiting for you at contour next one.com/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 juice box. So today for the Grand Rounds series, we're going to talk about management. That's our that's our our header. And Rod topic. Well, and there's a lot here. So indeed, it is a lot of feedback from people, a lot of feedback from people a lot of notes that you and I made on this document back home, we're talking about doing this. A couple of things. Why don't we just start with a little bit of feedback, and we'll work our way into it. Well, I wish my doctor would have told me that staying high for long periods is just as dangerous as a low. Yeah. So that's education. Right? Like, that's, that's understanding big picture. And whether doctors know it or not, this don't. I was about to say don't have a seizure idea, which is something I really don't want anybody to do. Right? I didn't want to sound like I was minimizing it. But this this better high than low idea. I understand why they might say it initially. But you have to tell people, the rest of that story. And why high and low is bad, why stability is what they're looking for how to get through stability, because just telling them better high than low, I think leads them down the wrong path that that that's difficult to get back from mainly

Jennifer Smith, CDE 3:27
because there's not enough there's not follow up to it is what that really leads to, they are given a directive of better high than low initially. And you know what? Maybe Okay, right now, but define that, give them a week from now once we're seeing how your insulin is working, once we see where numbers really are, once we see how you're reacting to the current doses and we make some other adjustments. We will talk further about this, right? Because initially, you may actually, I mean it is there's a math equation to figuring out initial starting doses for any age and person. But it's still just a starting place. And it's still not as precise as it eventually will get. So sure, a little higher right now, let's see how things go. We're going to touch base in a week or in a couple of days. We're going to look at this and we're going to say okay, now we can nudge that high. We don't want to stay high, long term down the road. Right now. We're just going to keep things from here to here. Maybe the target range is wide right now. Narrow it when you have follow up and also put that into you know your your notes about what was discussed. We defined blood sugar target range here to here so that whoever is the follow up physician or clinician knows what you've talked about. They can easily see it in the medical record and then that doctor or caregiver can clean that up. Yeah, can help to define that further for you. But when you give a blanket statement that sticks

Scott Benner 5:09
Yeah, it also makes the next physician, not just the patient, but the next physician leery about changing what's happening right now. Right? Right. Right. They think this is this was for a reason somebody told you to keep your blood sugar at 180 all the time. And you can explain to them no, that's not the case. Because somebody didn't tell you. No, that's not the case. So, right. A lot of this series, I think is about, it's about not just saying the first thing that you that you think to say, but giving it real context and an explanation. This is what we're going to do. This is about the timeframe we're going to do it in, this is why it's important. You just can't forget about it and say, Oh, he said better high than low. And then you go on, you know, from their emergency situation, to you know, a GP, then the GP finally gets you to an endo. And then the endo gets there. And this, oh, everybody's got this person's target set at 180. They might think that's on purpose, because you can't handle it. Or maybe you had lows before they'll make assumptions. And you know, these assumptions are what killed everybody. Right? Yeah. But this is how it comes out. I wish my doctor would have told me that saying hi, for long periods is just as dangerous as a low

Jennifer Smith, CDE 6:23
end for this person, it might have been that there wasn't enough follow up then. Or maybe they didn't follow up with somebody who could have helped them put the targets a little tighter together, right? Maybe they also didn't know enough to ask, Hey, I was told initially, the higher targets are okay that I shouldn't necessarily live there. But if I touch to 50, after every meal, and four hours later, it comes back down. That must be okay. Right, because that's what I was told it. It takes I think, you know, diabetes, especially is it's an evolving sort of trend of discussion, where this is where I am, this is the scenario, this is the really important stuff to focus on now. Okay, a month from now, a week from now, whatever, you're very likely going to be in a different place, you're ready to get more information, you're ready to ask more questions. And the doctor should also sort of move down that path with you, if you're not bringing up that they should be bringing it up and saying, Well, you're here. And everything looks safe, right? It looks good. But you could be here, right? Let's try this. This is why and that explanation to the why is really important. It's

Scott Benner 7:37
the nuance of the conversation. Like you can tell somebody, it's not wrong to say to somebody, Hey, if your blood sugar shot to 250 and came back down and leveled out again, that's fine. Not every time, you know, but not every meal. Because if you want now you tell me that's okay. And what you're probably trying to do is, is give a little bit of comfort. You don't I mean, like, Hey, don't don't kill yourself if stress about Yeah, if it jumps up one time it jumps back down, let you you know, that's okay, let it go. But not, once you tell them it's okay. Then breakfast jumps up lunch jumps up, dinner jumps up, a snack jumps up, they get high overnight, but it comes back down three hours later. And before you know it, that's an eight a one C? Yeah, you know, and they in their head, they're like, Well, the doctor said, It's okay, if it goes up and it comes back down again, they don't understand the big picture. Listen, right. Most people don't understand the big picture of health. I was just talking to a nurse on another recording recently. It's not out yet. And she said one of the most shocking things about becoming a nurse was learning how little people knew about their own body. Like she called it. Jenny's making the face. Yeah, like shocking how bad it is. And it led me to say, I saw somebody eating nachos with a bowl full of queso the other day and I saw the bowl, like the size of a softball full of liquid cheese. And I thought you're not supposed to consume that in a year. Right? Yes, yeah, you know, like, and here you are, you know, in one sitting, and then metabolic issues come up, which you don't see right away and are hard to diagnose. And they end up looking like I get headaches all the time, or my knees always hurt or why does my stomach hurt? Or how come I don't poop? Right? Like it's because it's and then you're off to the races. And before you know it your blood sugars are hard to deal with, you have all kinds of other underlying issues. And they don't come to the surface until they come to the surface in a very aggressive way with like some specific problem. And when we're talking about people with diabetes, we're talking about renal and cardiac and your eyes and absolutely big stuff, you know, not just go on a diet for six months and this will all work itself out. You know, what

Jennifer Smith, CDE 9:44
you said initially is 100% the case unless you have any type of biology avenue of education, you really are left in the dark about what your body is supposed to be able to do. How does it function when I do this, this is what my body does with this, right? And I, one of like my best examples of that was years ago working just as a dietitian in education specifically in diet in gestational diabetes. A woman had come in to me, and we're talking about kind of her eating and how that impacted blood sugar. And I said, Well, you know what, I don't see like, a lot of fresh stuff. And I said, I don't see any fruit at all. And she's like, No, no, I eat fruit every day for breakfast. And I was like, Oh, we didn't mention that. You know, she's like, Yeah, I did ice. It's right here. I eat Froot Loops. i She was not kidding. She was not joking, which means that as an adult age where she was long term, she never knew that Froot Loops don't count as a fruit. Like

Scott Benner 10:50
me, I out myself for a second. I once said to my wife, I was half joking but contour next one.com/juice box, that's the link you'll use. To find out more about the contour next gen blood glucose meter. When you get there, there's a little bit at the top, you can click right on blood glucose monitoring, I'll do it with you go to meters, click on any of the meters. I'll click on the Next Gen and you're gonna get more information. It's easy to use and highly accurate smartlight provides a simple understanding of your blood glucose levels. And of course with Second Chance sampling technology, you can save money with fewer wasted test strips, as if all that wasn't enough the contour next gen also has a compatible app for an easy way to share and see your blood glucose results contour next one.com/juicebox And if you scroll down at that link, you're gonna see things like a Buy Now button. You could register your meter after you purchase it or what is this download a coupon? Oh, receive a free Contour Next One blood glucose meter. Do tell contour next one.com/juicebox head over there now get the same accurate and reliable meter that we use. If you take insulin or sulfonylureas you are at risk for your blood sugar going too low. You need a safety net when it matters most. Be ready with G voc hypo pen. My daughter carries G voc hypo pen everywhere she goes because it's a ready to use rescue pen for treating very low blood sugar and people with diabetes ages two and above that I trust. Low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily, G voc hypo pen can be administered in two simple steps even by yourself in certain situations. Show those around you where you storage evoke hypo pen and how to use it. They need to know how to use Tchibo Capo pen before an emergency situation happens. Learn more about why G voc hypo pen is in Ardens diabetes toolkit at G voc glucagon.com/juicebox. G voc shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma. Or if you have a tumor in your pancreas called an insulinoma. Visit G voc glucagon.com/risk For safety information. But I don't think I was completely joking. She's like you don't get enough vegetables. I ate veggie sticks the other day and she goes Scott, those are potato chips. There's carrots in them.

Jennifer Smith, CDE 13:28
Yeah. I mean, and there are a little bit of like a humorous component to that. But I was just like I came home and I said to my husband, he's like, No, he's like she was joke. I was like, no, no,

Scott Benner 13:39
I told you before when my mom looked pre diabetic, a handful years ago, and a doctor told her to change her diet. She put together a diet that was worse than the one she was eating. Yeah. And she was trying trying to eat something that would follow along with what he was saying. Didn't people just don't know. So it's not your fault. But the doctor needs to know that that's the situation. Yeah, you know. So this next person says there are ways to have a lower more healthy a one see there being kind here about the podcast, such as being bold with insulin, let us know that this is possible and help us to achieve better agencies. Please don't shame us for falling short, but do encourage us to do better. I see this a lot, right. Like nobody wants to tell somebody they're not doing right. Well, right. became a social thing for a while. You know what I mean? Like nobody wants nobody wants to tell you the truth. Sometimes

Jennifer Smith, CDE 14:34
I feel people are worried. On the end of professional people are worried about creating like a shame type of explanation. When really that's, that's your job is to tell somebody when they're not healthy. That's that's your job, right? You didn't go into health care, to tell people to keep eating what they're eating or to keep, you know, not doing what they're not doing. You're

Scott Benner 14:57
not there to make friends and know that Yeah, you're and I get that I would listen, I would bet the argument back would be, if I push these people, they're not going to come back again. And to that, I might say, least you told them the truth. Right? You know, like, now it's on them, at least, you know, but keeping it from them or pretending they're going to do the right thing. That's not helping anybody. That's just mean, that's, that's you're lying, and they're lying. And we all know each other's lying. And none of us are saying anything about it. It's weird, right? You know, I

Jennifer Smith, CDE 15:26
see, I see questions often still, in this sort of day that we're in with technology, I still see questions about why people are. And it goes right along with this management and even like, target range for blood sugar and whatever. Why are we explaining blood sugar targets that are outside of the realm of what somebody without diabetes? Right? Why? Why are we saying that? A 200, blood sugar, a 250, that's safe. That's okay. You can come up here, you can kind of settle back down, etcetera. You know, the human body does not do that without diabetes. So why are we constantly telling people that it's okay for you to be in this really wide range, and then down the road, their expectation comes to be? Well, I stuck within these targets. And now I have problems with my eyes, or now I can't feel my feet. And I did what I was told. I was told this is okay.

Scott Benner 16:27
Yeah, no, I think it's got something to do with the physicians either not understanding it themselves, the mechanics of getting to those other blood sugars, or they've seen so many people fail at it that they think it's not possible. So why am I going to give them a target, they can't reach at least I'll give them one that they can, they can get but, but that's where this this person here says learn how to communicate diabetes, those things, suggestions. So often, we're told to do something, but not given a reason why? And then you and I made a note after that, that said, that says don't just give us a fish. Teach us how to fish. And right. Yeah, right. Yeah,

Jennifer Smith, CDE 17:03
absolutely. I think you had a thought. Let me bring it back into my brain. Like right there on the tip of my tongue. It'll come back to me.

Scott Benner 17:12
It's okay. Well, I think we got thrown off when your cat's whiskers came into the camera first.

Jennifer Smith, CDE 17:16
Yes, I sorry. I was gonna comment. And I was like, No, it's okay. I know she was

Scott Benner 17:21
you were like you I say something about that or let it go? Yes. Sorry. On the fault, though, I stepped over you. You had a look on your face. Like you were gonna say something. And I said that it's okay. Don't worry about it. I wish it diagnosis. They told us that what we learned at the beginning is foundational. And there are many things to learn. Moving forward for best management like Pre-Bolus and glycemic impact load bolusing for fat and protein, being aggressive when aggressive isn't necessary. Also, I wish they would have emphasized emphasize that ratios and basil will change and what numbers we get aren't set in stone. Okay, so this becomes another big problem. You know, you you set somebody's this happened to me. I remember the doctor was saying what's Arden's insulin to carb ratio. And when I pulled it up, it was like one unit that like, I don't know, like some insanely large number 300 carbs or something like that, because she was diagnosed when she was so little. But we were like, years later, and no one had ever changed it. Oh, and I didn't know anything about it back then. So I'm like, Oh, she's having all these high blood sugars all the time. And I'm like, I'm having a lot of trouble with meals, and I can't figure it out, back then I wasn't the guy who was like, Oh, just do this. I went back to the doctor, and I was like, I don't know what to do. And they pulled that setting out. They're like, Oh, and it was like it was off by like, I think she was one to 100. And it was set at one to three, she was using two thirds, too little insulin at every for every carb. So, you know,

Jennifer Smith, CDE 18:46
that actually, it kind of made me think of what I was going to. What I was gonna say is that, I think that in, at least initially, and maybe even for somebody who has had diabetes a long time, and now is really coming in with a set of questions. What it boils down to is explaining that this initial information is just that it's a baseline to start with, and navigating diabetes. I wish people would just be honest, and say it's not easy. It can get along the way of learning, you experience a hoz Oh, well, that totally makes sense, right? Or, gosh, this definitely can be built in now. So they're, they're stepping stones, if you will, to management. But as you just said, There's not just a start here, dose this there is again, kind of evolving changes. And that growth has to happen in your understanding, but how you understand it needs to be what comes from the clinical team that's helping you so they should explain to you that this isn't simply just put the insulin in and eat the food, right? That's not how simple this is.

Scott Benner 19:57
Yeah, I remember a doctor once saying when our was younger Wait, oh, she gets hormones like, oh wait, do you see the female hormones? Oh, and I was like, what she was like, wait a minute, UAH context? Is there any context? You know, oh, hormones make it harder. And I'm like, and, and you don't you mean like, though I figured it out between that and, and when it actually happened for myself, but nobody ever likes in that time no one ever stepped up and said, Are you bolusing? differently? Do you notice any strategies that help or hurt? Or, you know, are there times of the month that are different than others? That conversation never happened? Just oh my gosh, you should see Wait, do you see what happens? And I spent years going like, oh, like,

Jennifer Smith, CDE 20:41
like, I'm worried I wonder what's gonna happen? Yeah. And as if she didn't have hormones. age that she was,

Scott Benner 20:48
she was growing, I'm sure she had growth hormones. So at the very end others, this person says, this is kind of funny. bolusing for fat and protein impacts is a type one diabetic should not be considered an advanced topic. And I thought, but that's really true. It's very, very true. You cannot, you can gather up 100 People with type one diabetes and ask them, you know, what is your endocrinologist taught you about dosing for the impacts of fat or protein? They're not gonna, I mean, two people are gonna say somebody had mentioned that to them, you know? Correct. And yet it throws off every meal, almost every meal of every day and someone's management for 24 hours, that turns into a week that turns into a month. And it's it can be at the core of the whole thing the other day, Arden. She's weighed school. And she said, I did get a text from her. Hey, I had to stop at a drive thru on the way back. I'm, you know, I had to grab some DT amount of time. I said, What do you get? She said, I got Chick fil A. And I said, Okay, 45 minutes from now your blood sugar is gonna go up. And I was like, Don't forget. So you know. And by the way, you know what she did? She forgot. And but I was, she was probably driving. Well, she was now at another place doing this homework. And then she had to get into a class and stuff like that. And I said to her, I'm like, I'm like, okay, look, just look at your algorithm. Is it suggesting any insulin? And she said, Yes, I was like, I think you should put it in. You know, because the algorithm was trying to fight. It was trying to fight the fight, but it wasn't going to because it wasn't compensating for the she didn't put fat into the she didn't it didn't know what it was trying to fight. Didn't know what I was doing. Just like this morning, by the way. She thought she lost her ID. Oh, so like, I get this call. I'm like, why did that happen? This is gonna happen a couple of times, I'm pretty sure. Yeah. But while she's searching for the ID and doing the math in her head that she doesn't leave five minutes from now she's gonna be late. And if she's late, and she misses a class, and she only gets the missed so many. And she says I'm watching her blood sugar, it is just going up. It just went from 100 to 120 to 130 to 140 that he got an arrow straight up from trying to find her ideal stress. Yeah, from the stress of it. Oh, Doctor, I gotta tell you that. They're gonna say something like, oh, the mornings, huh? Yeah. Oh, no mornings. They're hard. Thanks a lot. Right. And

Jennifer Smith, CDE 23:13
that will be as we talked about before, that'll be one of the fingerpointing on the records. We'll see what happened here. Yeah. No, it was probably in school one

Scott Benner 23:25
month from now if you ask garden, what happened there, she's not going to say I lost my ID thought I was going to be late and got upset. Like she's gonna I don't know what this is, you know, so. But all this goes back to Tools. Like give me this person says, give me the correct tools give me parameters and instructions. Let me know I could probably do this, if I had these these things in place, right. And to what your point is, I always say, it's experiences. Like you have to have them over and over and over again before they just start becoming not just like second nature, but they make sense to you. Like out of nowhere, something happens you I know what to do? Yes. As soon as she drove away, like, you know, she had her ID this morning, and she left. I thought she needs a temporary Basal increase. Like I don't care if she's on an algorithm or not like right now she needs a Temp Basal increase this algorithm is not it doesn't know there's an impact here. It's it's changed rising as if she ate food. And it has not been told there's any food there. So we did that. And it came back down pretty quickly. Yeah.

Jennifer Smith, CDE 24:25
Good example I have of like those lived experiences. You can provide all the information possible. And then when you get into like, from my angle of providing education, and give you scenarios, things that might happen, but until they really happen, you have nothing to apply that to and you may need to dig deep and think about it right? A good example is somebody I work with, who had emailed me about a scenario and emailed me just to say, You know what, everything that I've learned, I knew how to work around I found it. And I think I did the right thing. Yeah. And 100%, this person had done the right thing, right? blood sugars that were doing something that shouldn't have been happening based on everything else that had led up to that point. And what did the person do? They change their site, they changed their, their insulin, and it all navigated back down. But without some lived experience and some information pointing to Hey, If this, then this, right, right, they're gonna throw their hands up and be like, I don't know what it was not

Scott Benner 25:31
make that change. I also, you know, that's true. Because oftentimes, you'll see people changing out sites, when it's not the problem, right? When their settings are bad, and they're constantly the pump doesn't work, the pump doesn't work. They over and over, and I, sometimes I online, I'm like, stop there, like, I've changed the pump three times, like, Stop changing the pump. Just stop. It's not your site, right? Like, your settings are bad. Like, we're your settings are great, but something's happening right now. And your settings aren't up for the challenge of what's happening today. You know, like, it's, again, lived experiences. That's how you'll figure this all out. I like this, this feedback here, give me all of the options, not just the ones that you think are best or better or efficient. I would like to make my own decisions, and then craft my own ecosystem of how I deal with this. I think that's a great point. You know, there's more than one way to do this. And everybody's brain doesn't click with the way you say it one time, right? That just you have to give people the autonomy to autonomy is such a big part of this. Because if they don't have that, they don't have all the ideas, and they can pick and choose from it make their own tool belt. That's a problem. But if they don't feel like they can make changes on their own, that's also a problem. Like, that's a big, big problem for people with type one diabetes, the ones that don't feel comfortable, or don't feel like it's their job to make changes to settings. They're the ones I see struggle, the most long term is adults. Do you agree?

Jennifer Smith, CDE 27:05
Yes, absolutely. Because they from an early on diagnosis, whether it was childhood, and that's how their parents navigated, because that's what they were taught how to do. And then they move into adulthood, managing that way, really only following up with the doctor every six months. And that's when something gets shifted and changed and not not really knowing that they're in the driver's seat. 24/7, between that 1520 minute visit with the endo every six months, right, you are the Navigator. But unfortunately, if you don't tell somebody, it's almost like giving the Okay, many people with this type of a, you know, a use of something that supplies like insulin, right? You really have to be directive and say, You know what, I'm going to give you these starting places. And here are some pointers for adjusting. I'm happy if you adjust. In fact, give me feedback when you try and adjustments so I can help you behind the scenes if there's you know, communication with an electronic record or something like that. But you do you have to almost give the okay to people. Otherwise, they may also come back to the office and not provide feedback that they've been tweaking things on their own, because they may feel like they're gonna get their hand slapped. Yeah.

Scott Benner 28:20
Oh, that's definitely happening. Right? Yeah, people are definitely lying. They're always like, I can't I can't let my doctor catch me doing this. And when people say that, to me, I'm like, What are you talking about? Like, oh, I want to make an adjustment to the basil, but I'm afraid I'm gonna get in trouble in trouble, like, so. Ironically, you're not in trouble, quote, unquote, for the seven and a half a one C, but you wouldn't be in trouble for putting the Basal up point three an hour and making it a sentence? fascinate, right. Yeah,

Jennifer Smith, CDE 28:45
absolutely. And insulin, interestingly, is, I think it's, I can't think of any other medications on the market, that people self adjust, right? Like you don't go to your cardiologist and they give you blood pressure medication, you're like, today, I think I'm going to take two of these tablets with you. It's gonna happen, right? Like insulin is one of those. It's I think it's the only thing that really, it does require you to look at your own information and make adjustments based on what you're seeing and where you want to end up. What is the target you're aiming for? What are you trying to get to, things aren't working?

Scott Benner 29:23
It's also interesting where the line gets drawn, and I had a, I had a root canal go bad. It was like 11 years old. So I was pretty happy. It lasted that long. So I'd have changed out right. And when he got in there, he's like, Hey, there's like a little bit of an infection there. You know, this is really going to hurt tomorrow. Let me give you a prescription for a pain medication. He said, The one I'm going to write for you is highly addictive. He said, so you have to be careful. And I was like, I'm gonna go with Advil if you don't mind, right? And he goes, No, no, you should probably take this script because this is gonna be a problem, blah, blah. And I was like, I'm good. I don't I don't need your script. All right. By the way, I didn't even take an Advil when it was over the guy said, great dentist and did a great job. But he was so willing to be like here, would you like a week's worth of narcotics? Because I dug around in your gum for an hour. And I was like, and I'm like, Wow, look how easily he would have given that to me. Yeah, but then you go ask an endocrinologist. Hey, you know, wouldn't it be cool if that lady could change your basil and they can't handle that? Right? Again, and all that, but you can give them oxy. I was like, right. All right. Can we make sense once in a while? No. All right. This person says, Can you give me your medical opinion, please don't parrot what you're reading, ah, in this example, as their kid was doing a six for a lot of years. And then it rose up. And the doctor went, That's okay. It's still within target. And they're basically just telling them like what the ADA said, like ADA says sevens fine. This is fine. And like, so then that takes the onus away to do better again, it's again, it's just like, oh, whatever, you're fine. It's like, what's your blood pressure supposed to be? I don't know these things. 120 over something. It's

Jennifer Smith, CDE 31:06
well under 140. And it's like, what let's call it like, 130? Over 80. Okay, right. But in anything kind of, you know, within that sort of the range, but just your blood

Scott Benner 31:20
pressure was 150 over 90 all the time. What a doctor guts. Alright, it's cool. Not bad. No, no,

Jennifer Smith, CDE 31:25
they shouldn't.

Scott Benner 31:29
But you I saw you getting upset earlier talking about those column? 250s. Okay. You know what I mean? Like, that's the same thing. But you don't but that doesn't get seen that way. A cardiologist would never say that to you. an endocrinologist would say that to you all day long. Oh, just 250 it comes back down. You're fine. What? How am I gonna be in 20 years? Right? Yeah, yeah. What do you do you own a LASIK center or something like that. And you're thinking of getting into diabetes surgery to like, what are you trying to have happened to me here? And what and oh, sorry, I got upset. Now you can talk? No,

Jennifer Smith, CDE 32:04
I was gonna say and for the person who is a little bit more concerned about the lower blood sugars because of whatever fear that was instilled eons ago or whatever. Those numbers that are higher that they've been told are okay, even for lingering or you know, non lingering time periods, like a blip up and then it kind of comes back down. Eventually, they may get to feeling that they're safer. They're okay at those numbers, because in their mind 250 becomes okay, then all the time. Yes, not just the up and it comes back into what you define as the as the healthy brain to be re

Scott Benner 32:47
in range. Yeah, yeah. Especially with the thing that you don't feel. Listen, if your blood sugar's if you're a one sees rise slowly enough, you won't feel the impacts the physical impacts, your body is going to do a pretty good job of trying not to die and like what it was it this opens up blood vessels that like does all kinds of stuff, right? Like to try to like Yeah, yeah, yeah. To, to do that kind of stuff. So. So when you say it's okay, this person is slowly not becoming themselves anymore, they're altered mentally even, you don't even realize how foggy they are, they get used to that their body gets used to trying to exist like this no different than, you know, how you end up with an enlarged heart from smoking. Right? Right. Same idea. And, and yet, it's like, it's okay. It's okay. It's not okay. Like, it wouldn't be okay for you. If if you were that if the doctor, his blood sugar was 250 all the time. They'd be going like, we gotta fix this, you know, so I don't, I don't know why that that tired. It's just tired. It's lazy. Well,

Jennifer Smith, CDE 33:50
and again, with today's technology, and everything that we have, that it's got such tight ability to have alerts and alarms to keep people safe. And yes, technology can be a little weird and whatever. Yeah. But the majority of the time, what we have today with the alarms and the alerts, there's no reason to say that you can skirt up to this value as long as you're not under here. And as long as you're not hanging out in the low zone. And again, that's not even often very well defined. Yeah, what's too low? Where do you want to hit? What how long? Can I sit at what you're not telling me about a low number? What do I do it? Again, it's very like Flim

Scott Benner 34:32
Flam. It's nebulous. It really is. And by the way, even now with a within a non aggressive algorithm, like the eyelet, for example, that thing's still targeting probably under like 180 or 170. And you and I would be like, I mean, listen, it's a great tool, and I think it's going to help a lot of people but I wouldn't rely on my daughter and like, and that's 70 points better than telling somebody to 50s Okay, so I just need to understand speaking Understanding even though we had management under control and a consistent a onesie in the fives, my Endo, my son's endo said that we need to do less work, we need to do less work and let his numbers get higher. So as a one sees more like in the mid sixes or sevens, that whole you're trying too hard thing. I don't get that, like I really don't, because I know they don't want people to go crazy taking care of themselves. Right. But at some point, it does become second nature. Like you don't you mean you? It's a lot of hard work upfront for a lot of benefit long, long term. And

Jennifer Smith, CDE 35:39
I think in a visit where you the clinician, you're looking at that, let's call it a one C, which again, is not

Scott Benner 35:46
that shallow, I'm enraged and everything just

Jennifer Smith, CDE 35:48
not right. Are you asking more in depth about how much work it is taking? Because again, once you've been there for a while, as you said, it becomes more most of it becomes more second nature and you you're able to just navigate and keep that yeah, because you're doing what is pretty typical. And until or unless something changes with a growing child or a teen or something in adult life. For the most part, you're doing a good enough job. And that's when you have to define or ask the person. Gosh, how much are you checking? Yeah, right. If you can see that, you know, even in a visit somebody's like every two seconds, they're like looking at their numbers. There might be something more like on the mental angle to logical

Scott Benner 36:34
issue. Yeah, they might be under a lot of stress and pressure. But yeah, just assuming, you know, it really does it piggybacks on to this point that you added to here, you told me please bring it up, that seeing a good low a one C and assuming it's from like low blood sugars is a dangerous way to think as a doctor. This is Oh Jenny, this happens constantly the amount of people who listen to this podcast, then head off back to the doctor super excited, oh my god, I got my one seat down. It's nice. It's not that hard. Even I figured it out. Like turns out my settings were wrong. And the doctor yells at them, because they as soon as they see a number that's lower on that agency, they assume you've had multiple, you know, elongated lows to create that agency because they don't even know how to do it. It's such a unknown quantity to them, that they just assume that you've cheated the a one C test by having a lot of lows. Right? Yeah. And some of them won't listen, when people try to explain it to them, or the people are put their head down and you know, don't stick up for themselves. Right? It's a dangerous assumption to make. That's just because somebody has an A one C and the sixes are the five that must mean they're low all the time. My kids never low. Like, like, once in a great while. And even that means a drifting to 55 not like, you know, oh my god, what you know, Bob a lot most of the time her blood sugar's I don't know, it's not it's never usually under 70. Right, you know, honestly. So we have some bullet points that go through here at the end. So we'd like 10 minutes left. Yes, some of them are repetitive, so we might have to pick through them. And I'll skip over the ones I wished my doctor knew that tightly managing my son's blood sugar is far less stressful than living on the roller coaster. That's the thing you wouldn't know unless you lived with it. Correct? Like actually trying and working towards it is not as hard on you as the unknown aspect of it. You know, I think it's the difference between being told you're about to walk through a haunted house and not being told, you know, when stuffs just jumping out from around the corner all the time. You're always like, I don't know what's gonna happen next. Right. But yeah, working hard. I find this to be true for me. I don't know that everybody would find this to be true. I assume you do. Right? Like the work you do is, is worth what you get out of it? Absolutely.

Jennifer Smith, CDE 38:49
Yeah. 100%. Because I have, I have things that are known. And it makes the majority of my management, more like brushing my teeth. I don't think about the like, brush my teeth, whatever, right? It's not a thought. I have the time it's like out of my brain that you're putting the toothbrush on the brush and brushing and whatever. That's how I think about the majority of my management, unless something is really shifting stress or whatever, or I'm ill. But even that I've got enough enough years of experience to have a go to. Yeah, right. It's a starting point of oh, I can try to do this. And definitely it helps, right?

Scott Benner 39:32
So I always describe it as walking through a door. I don't like consciously think reach out, grab the knob, turn it pull. I just I just end up outside the door. And that's how diabetes works for you after a while and it is it becomes a muscle like I bet you Mike Tyson hasn't fought in a while but I bet you if you walked up to him and tried to slap him, I bet you his head would move pretty quick and he'd pop you right in the mouth. And so like and that's kind of how diabetes ends up working out. You don't know what to do. happening. But now you have all this experience and you know, blah, blah. This person says, Please tell people that they could actually go into decay with a normal blood sugar number. Yeah.

Jennifer Smith, CDE 40:11
That's so important. And where do you usually go? If you have ketones, and you're not feeling well, and you can't keep something down? Where are you going back to

Scott Benner 40:25
the hospital? That doesn't seem to know anything about helping me with my diabetes. And

Jennifer Smith, CDE 40:28
in that scenario, we actually, unfortunately had a really sort of a bad situation with one of our clinicians who her fiance had to advocate for her. And she's actually kind of corresponding with the hospital system, because of how they navigated it for she knew she was there for five hours, trying to get them to just give her fluids, her blood sugar was normal. They kept telling her she wasn't in detrimental need,

Scott Benner 40:59
right? Yeah, yeah. But she, I

Jennifer Smith, CDE 41:01
mean, and that's it. She knew she knew what she needed. I mean, sure, if you can stick your own IV. Oh,

Scott Benner 41:08
great. Imagine knowing so much about it that you know, you're in this trouble. This is the next need you have you need, you need IV fluids, then you take yourself to the right place, tell the people who are supposed to know and they're the ones who are going to be the impediment between you and not maybe dying. And that's by that happens quick. By the way. I forgot how nursing, how do they put it like it's not compatible with life, the acidity, right? That happens, right? The

Jennifer Smith, CDE 41:36
changes in all of your electrolytes and all of the things that should be being measured in the body. And ketones are one marker. And obviously, with diabetes, blood sugar would be technically another thing that they look at. But you know, when we talk about you, glycemic DKA, that's unfortunately, a level well above what most emergency departments even understand how to navigate Yeah. So

Scott Benner 42:01
I'll run through the rest of these here. Somebody said, Please, you should talk about the benefits of like mini glucagon injections for some people, especially with little kids who have trouble with lows. Please tell people about Pre-Bolus thing this woman says how we said this already today, protein and fat and how it impacts blood sugars and spikes. An explanation of insulin resistance would have been nice, when it happens, why it happens and how to manage it. So that's a person saying even if your settings work, when something else happens, I should know, like what to do next. Right? I wish my doctor knew that a one C wasn't everything. As soon as my doctor hears that my a one C is 6.8. I hear from them. You're doing great, don't worry. Meanwhile, I'm on a roller coaster all day long. I've at 50 blood sugars and 400 blood sugars on most days. And I have no idea where to begin. But they saw the 6.8 and said hey, you're doing great, right? Yeah, that's it. I wish they knew that there was no good reason to delay a person from getting a continuous glucose monitor. Within the hospital or as soon as after diagnosis as possible. I still want people to learn how to prick their fingers. But uh, CGM is such a, it's a next level, I think people deserve it. Who have type one diabetes. I think anybody using insulin deserves one. I agree. Same thing with pumps, please tell us about pumps sooner. This person says you should tell people about the podcast that's very nice. Whoever put that in here.

Jennifer Smith, CDE 43:31
I would say along with the pumps that I think it's gotten better crack. Most practices now have more knowledge about the multiple options that are on the market. But I still see practices that are more prone to offering or suggesting heavily one particular pump versus another. And what that often comes from his just their knowledge about that one particular system and they feel so strongly that it is the right one. Again, this is where individualization needs to come into the picture. So you need to know about everything to help the person pick the right one at the right time.

Scott Benner 44:10
I think in a world where you know, especially while we're making this episode, these episodes in a world where people are so under educated in the things that you're talking to other people about. I understand where this comes from, like, you know, I figured out how to use this one pump at least I can talk to them over the phone about where the settings at and stuff like that, but you are eliminating choice from people and not just their personal choice but choice that might allow them to find something that actually fits in their lifestyle better. Right. You know, I use I saw a little girl the other day online. So happy holding her tandem. Her ex too. Yeah, she's so thrilled, you know, and someone said, How come you didn't get her an omni pod? There wouldn't have been any tubes. And she said this just works better for her. And like, like for her personality. She said, good. Like, that's great. Yeah, but You shouldn't get like, because the, you know, I mean, because think of how that happens. Why are you? Why do you know one pump better than the other one? Right? I don't know, because the salesperson got there first. You know what I mean? Like, what the heck? Because back in the day before all the laws, they sent the doctors on better vacations. Yeah. Why we're doing this one. Jenny's laughing because that is what they used to do. That's not legal anymore. I'm sure that doesn't happen. Good lunches. That's it. They used to have like meetings, but they'd have them in Hawaii.

Jennifer Smith, CDE 45:31
Yeah. Or take you out for you know, good, like dinners where it was like a lunch and learn type of experience. Right?

Scott Benner 45:37
So yes, yeah, a bottle of bourbon and a steak. And all of a sudden, we're getting a pump.

Jennifer Smith, CDE 45:41
I remember when that all changed. Yeah.

Scott Benner 45:43
Yeah. Was that was actually a good law. I don't I don't have anything else for this one. So I'm just want to ask you, you know, for your kind of closing thoughts on how doctors should be talking about actual management to people? Yeah,

Jennifer Smith, CDE 45:55
I think we, I think we discussed the majority of what was I really do, especially along with all of the comments that people offered just in consideration. I think, you know, all of this communication and management and everything that we've talked about so far, it just it It boils down to individualizing. And really knowing starting place and where to move from there with somebody, because that starting place again, is just that you're going to have to move that person along and or help them move along because of the questions that they're bringing you. Maybe they're further along in understanding than you think they would be right so you have to meet them where their need is. Yeah,

Scott Benner 46:40
I know it sounds I always felt I always feel stupid saying cliche things but meet people where they are big deal. You know, you understanding what you're talking about. Big deal. You being able to communicate what you're talking about big deal and giving people a complete story. And not just snippets is is very, very important. Anyway, thank you for doing this with me. Thank you of course.

A huge thanks to the contour next gen blood glucose meter for sponsoring this episode of The Juicebox Podcast. Learn more and get started today at contour next one.com/juice box. 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 Ford slash juicebox you spell that GVOKEGLUC AG o n.com. Forward slash juice box

if you are a loved one has been diagnosed with type one diabetes. The bold beginnings series from the Juicebox Podcast is a terrific place to begin listening. In this series, Jenny Smith and I will go over the questions most often asked at the beginning of type one. Jenny is a certified diabetes care and education specialist who is also a registered and licensed dietitian and Jenny has had type one diabetes for 35 years. My name is Scott Benner and I am the father of a child who has type one diabetes. Our daughter Arden was diagnosed in 2006 at the age of two. I believe that at the core of diabetes management, understanding how insulin works, and how food and other variables impact your system is of the utmost importance. The bold beginning series will lead you down the path of understanding. The series is made up of 24 episodes, and it begins at episode 698. In your podcast, or audio player. I'll list those episodes at the end of this to listen, you can go to juicebox podcast.com. Go up to the menu at the top and choose bold beginnings. Or go into any audio app like Apple podcasts, or Spotify. And then find the episodes that correspond with the series. Those lists again are at Juicebox Podcast up in the menu or if you're in the private Facebook group. In the featured tab. The private Facebook group has over 40,000 members. There are conversations happening right now and 24 hours a day that you'd be incredibly interested in. So don't wait. So don't wait. Check out the bold beginning series today and get started on your journey. Episode 698 defines the bowl beginning series 702, honeymooning 706 adult diagnosis 711 and 712 go over diabetes terminologies hit Episode Seven pick team we talked about fear of insulin in 719 the 1515 rule, Episode 723 long acting insulin 727 target range 731 food choices 735 Pre-Bolus 739 carbs 743 stacking 747 flexibility. In episode 751 We discussed school in Episode 755 Exercise 759 guilt, fears, hope and expectations. In episode 763 of the bowl beginning series, we talk about community 772 journaling, 776 technology and medical supplies. Episode Seven at treating low blood glucose, Episode 784. Dealing with insurance 788 talking to your family and episode 805 illness and ketone management. Check it out it will change your life when you support the Juicebox Podcast by clicking on the advertisers links you are helping to keep the show free and plentiful. I am certainly not asking you to buy something that you don't want. But if you're going to buy something, or use the device from one of the advertisers, getting your purchases set up through my links is incredibly helpful. So if you have the desire or the need, please consider using Juicebox Podcast links to make your purchases. Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com


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