#1206 Not Evidence Based

May 24, 2024Scott Benner

Elise has type 1 diabetes and a lot of drive!

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Scott Benner 0:00
Hello friends and welcome to episode 1206 of the Juicebox Podcast.

28 year old Elise was diagnosed just seven months before our recording. She knew she was antibody positive and so she expected a type one diagnosis. Elise has a PhD and is getting her MD right now, I think at least knows how to multitask. We're also going to talk about a pelvic reconstructive operation that she's had and the long recovery process. While you're listening today. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan are becoming bold with insulin. Speaking of being bold, do you want to help with type one diabetes research? Yeah, do well, if you're a US resident who has type one or is the caregiver of someone with type one, you can do that from the comfort of your home. T one D exchange.org/juicebox. complete the survey and just like that you've helped, you're also supporting the podcast and you're just being a nice person. Also, you might get something out of it to go check it out T one D exchange.org/juicebox. And don't forget to check out the private Facebook group Juicebox Podcast type one diabetes, we're up to 50,000 active members there is a conversation happening right now that you would love this show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn Find out more at G voc glucagon.com. Forward slash juicebox. Today's episode is sponsored by Medtronic diabetes, a company that's bringing together people who are redefining what it means to live with diabetes. Later in this episode, I'll be speaking with Mark, he was diagnosed with type one diabetes at 28. He's 47. Now he's going to tell you a little bit about his story. And then at the very end of the episode, you can hear my entire mini interview with Mark to hear more stories from the Medtronic champion community or to share your own story, visit Medtronic diabetes.com/juice box and check out the Medtronic champion hashtag on social media. This episode of The Juicebox Podcast is sponsored by us med you 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 to get your free benefit check and get started today with us met. My

Elise 2:43
name is Elise and I'm 27 Or I just turned 20 Actually, and I was diagnosed with type one this past June. So it's been about six or seven months now. But I kind of knew that I was headed down that pathway because I was antibody positive and worked in type one research beforehand.

Scott Benner 3:00
How did you know you were positive.

Elise 3:02
So I found out by accident. I was doing research after I graduated from undergrad in a lab at a major medical institution that was doing research in type one, I had no connection to type one previously. And we use our own blood to like practice tests to make sure that we weren't wasting patient samples and whatnot. We just had to like basically QC them. And I was doing that. And I was using my own blood. And this one test that I was running kept coming back positive in a way that was not anticipated. For what I thought I was running, which was my own blood, which should be negative. So I discovered that I had gad 65 antibodies kind of by happenstance, in that way, happenstance

Scott Benner 3:43
that's random. Yeah. Yeah. Yeah. Oh my god, we're gonna teach you guys how to use this test today. Oh, use your own blood. We don't want to waste the samples. I have why Yeah. Oh, wow. Yeah.

Elise 3:55
So then I went to an endocrinologist that had all of my antibodies tested. And I've had between two and three positive at any one given time. That was probably about six or seven years ago that that happened. What

Scott Benner 4:09
understanding that they give you at that moment, did they say This means you're going to get type one diabetes at some point, or you have a chance of it? Or what are they? How do they present it to you? At

Elise 4:18
that time, all of the trial, that research hadn't been published yet. So we didn't really have a great idea. I think there were a couple of studies that had come out of Europe that had an idea of what it looks like if you had two or three positive basically they said in your lifetime that you will end up with type one unless you get hit by a bus first. It's just we don't know when did it didn't take too long. What

Scott Benner 4:42
do you 2021 At that point, somewhere around there? Yeah, I

Elise 4:45
was about 21 at that point. And now I'm 28. So Wow.

Scott Benner 4:49
And so how did you notice it coming? I guess because if you were on the lookout, yeah,

Elise 4:55
well, so I hadn't measured I definitely had a lot of issues with My blood sugar at that time around when I found out that I had antibodies, but I was having reactive hypoglycemia. So I was like dropping into like the 30s and 40s, like an hour or two after eating anything for no apparent reason, which was a wild experience. So I wore a G for I think it would have been at that point in time for a while. But then this thing would happen, where if I would try and like treat a low, I would just like spike and then drop again. And it was just easier to not do anything so that I stopped wearing a Dexcom. Because it wasn't actually changing what I was doing.

Scott Benner 5:33
How long did the lows last for?

Elise 5:34
I stopped caring about them after like two years, they probably kept going. And I just wasn't aware of them.

Scott Benner 5:40
What did they feel like versus what does it feel like to be low now?

Elise 5:44
I didn't feel it at all. Because I wasn't dropping quickly. Like my, I was just kind of sitting in like the 30s or 40s. And so I had no idea that I was low.

Scott Benner 5:58
So a low with manmade insulin versus a low with your natural insulin. Completely different experiences.

Elise 6:06
I don't know that they feel different. I think it's the rate of change. That makes me feel dumb. Okay. Okay. Yeah, I think the rate at which I'm dropping depends on whether or not I feel below. What

Scott Benner 6:19
did you do when you were in the 30s? Before you had diabetes before you're using insulin, but would you just sit around and be like this will pass or

Elise 6:26
so at first, I would try to like have like, short acting carbohydrate, but then I would just like come up into the 80s and then drop right back down into the 30s. So I had to be like really specific about the way that I like timed protein and fat like with my carbohydrate intake as to not like, like in a ball. And anecdotally, I've heard that this is a thing for people that later down the line and up with type one. But there's no clinical evidence or like published data to support that. Interesting.

Scott Benner 6:55
That's really something. Okay, so you are eventually diagnosed at that point. Are you in practice? Are you like, well tell people what you do, I guess first.

Elise 7:05
So I am in my third year of an eight year program. I'm in which I'm getting both my MD and my PhD. Third

Scott Benner 7:14
year of an eight year.

Elise 7:17
Yeah. Yes. So the way that that works is you do the first two years of med school, and then you take a break from med school and you do four years of a PhD. And then you go back and do the last two years of med school and then you do residency and fellowship, etc, etc.

Scott Benner 7:33
Oh my God, will you be a physician in your mid 30s? Working? Yes,

Elise 7:36
yes. Yeah, I graduated from this program in 2029. was

Scott Benner 7:41
very nice of you to keep the country afloat with all the loans you're taking out. Thank you.

Elise 7:45
Actually, no, that's the benefit of the it's called the medical scientist training program. So it's completely NIH funded i You don't have to pay for any of medical school and you get a stipend for all eight years. diabetes

Scott Benner 7:57
comes with a lot of things to remember. So it's nice when someone takes something off of your plate. US med has done that for us. When it's time for art and supplies to be refreshed. We get an email rolls up in your inbox says hi Arden. This is your friendly reorder email from us med. You open up the email to big button it says click here to reorder and you're done. Finally, somebody taking away a responsibility instead of adding one. US med has done that for us. An email arrives we click on a link and the next thing you know your products are at the front door. That simple. Us med.com/juice box or call 888-721-1514 I never have to wonder if Arden has enough supplies. I click on one link. I open up a box. I put the stuff in the drawer and we're done. US med carries everything from insulin pumps and diabetes testing supplies to the latest CGM like the libre three and the Dexcom G seven. They accept Medicare nationwide, over 800 private insurers and all you have to do to get started is called 888-721-1514 or go to my link us med.com/juice box using that number or my link helps to support the production of the Juicebox Podcast. 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 vo Capo pen can be administered in two simple steps even by yourself in certain situations. Show those around you where you storage evoke hype moped and how to use it. They need to know how to use G Bo Capo pen before an emergency situation happens. Learn more about why G vo Capo 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. Yeah, how'd you find out about that? Did you win a lottery and somebody told you about?

Elise 10:36
I mean, it's very there are about 50 programs in the US they take between like two and like 10 students each. So they're very, very competitive.

Scott Benner 10:45
Am I talking to are you brilliant or something? What's going on?

Elise 10:48
I wouldn't say so necessarily. But it's just a it's a niche topic because you have to be in it for the long haul. With eight years of education,

Scott Benner 11:00
also be willing not to make money into your mid 30s.

Elise 11:02
Yes, this is true. I do have an engineering degree. And I think sometimes about what I could be making an industry versus what I'm making eight years when a grad student stipends and I waited hurts my soul.

Scott Benner 11:13
Right. You got an engineering degree and then you went back to school to do this. Yeah, yeah, I did. With you. Go ahead. Yeah. Really? No,

Elise 11:23
I don't really know what I was thinking. So I started med school at that point. I this was three years ago, I had checked my agency probably every year or so I also have Hashimotos and Crohn's disease. So I'm just kind of an autoimmune nightmare. And so at that point, I was testing my agency every year. So my agency was typically running in like the mid fours. We didn't worry about it whatsoever. I then this past spring had to go through I had a really like large orthopedic surgery in which they had to, basically like break my pelvis and reconstruct it. Okay. And so, pre op, I had labs done, and they ran an agency, which I hadn't done had done probably in three or four years at that point. And my agency came back at five, nine, at which point I was like, That's not where it was the last time I looked at that. So I had eaten a pair probably like 45 minutes an hour earlier. And I was like, You know what, let me just test let me just see. And I was like, 330, I was like, Well, I think I think I have the diabetes now. I think it has happened, Lisa.

Scott Benner 12:33
I like the way you tell stories you like I robbed a train but I got a splinter on the train that you told me about the splinter. I want to know how about like, what your pelvis, what happened to your pelvis,

Elise 12:43
I have hip dysplasia. So essentially, like the socket of my hip is shallow, and my femur was not, like seated well in that socket. And so I had been a competitive athlete throughout my entire life. And over that time, I had shredded through the cartilage and muscles that were doing the job that bone was really meant to be doing. And so I had a very uncommon orthopedic procedure called a Peri acid tabular osteotomy where they rake all the way around your hip socket, and then reorient it over top of the top of the femur and screw it back into place. So I have for four and a half inch screws in my pelvis.

Scott Benner 13:32
How long did it take to recover from that?

Elise 13:33
I'm at six months post op now, I would say I'm just getting to a point where I'm fully back to my normal life. What was the pain like? Well, you have to it was an inpatient surgery. So I was in the hospital for about five or six days. And then because nothing can apparently go right in my life, I see pneumonia while I was in the hospital, and then my incision to hissed and I had to have a second surgery to re close it. Yeah,

Scott Benner 14:01
I'm not getting in a car with you. That's for sure. Yeah,

Elise 14:04
I really I didn't get great luck in the body department. Yeah, at this point now, like my pain is better than it was pre op and I can run again. I've started horseback riding, again, all of that type of thing, but it was definitely a big recovery.

Scott Benner 14:21
Did you need more effort with your insulin through the recovery?

Elise 14:23
I was so new. So I was diagnosed on June like ninth or 10th and I had my surgery on July 5.

Scott Benner 14:30
Did you reach out to me on the podcast eight minutes after you got diabetes or something? Yes.

Elise 14:34
Yeah, I did. Because I've been listening to the podcast, probably since like you started because I had this weird special interest in type one, which is why I was working at a type one diabetes lab at the time. So like I listened to the podcast in like 2015 I don't think

Scott Benner 14:52
this is possible this but maybe you gave yourself diabetes by being around as much

Elise 14:56
I might have. Yeah, so I had lived Send to like, all of your pro tips all of your episodes, basically ever before I was even diagnosed.

Scott Benner 15:07
This is very interesting. Okay. Also, just quickly before the surgery, if you tried to run the straight line, would you go in a circle? Or was it not that bad?

Elise 15:14
I couldn't really run

Scott Benner 15:18
that dumb joke. I'm done now. Wait. So this is super interesting. Okay, so you as a former engineer, med student, you decided you were gonna get involved with diabetes? Yeah, you start listening to my podcast. And then while you're at med school, learning how to do a blood test, learn that you have get antibodies and are likely going to get type one diabetes at some point. And so you basically listen to the podcast for years, almost nine years before? Before? Not that long, but a long time before you got type one. How much did that help you when you were actually diagnosed, started using insulin

Elise 15:59
so much? Because the amount of education I got was 00. Wait

Scott Benner 16:05
a minute, so you would have you probably, oh, this is so crazy. You were like, I got diabetes. I'm gonna go on that podcast. And tell them the story. That's what

Elise 16:13
we're doing because I taught myself how to manage my diabetes exclusively from what I knew basically from those podcasts. So

Scott Benner 16:20
I'm taking care of you basically, basically, your brain and your fingers. Yeah. Okay. I'll accept that.

Elise 16:28
Yeah. So at that point, that was in like, April, right. I messaged my primary care. And I was like, Hello, I've done an oral glucose tolerance test in my living room, and I have diabetes. Now. Here's the results of my antibody tests proving it's type one. Can you please refer me to Endo? And then I went to endo a month later, which in hindsight, I really probably should have gone somewhere before that, but I just didn't.

Scott Benner 16:51
Are you married? No, no. dating someone? I

Elise 16:55
have a partner of three years.

Scott Benner 16:56
You're with somebody? Okay. I'm worried for your safety. I just wanted to make sure someone wanted to make sure someone was with you. Yeah,

Elise 17:04
no, I'm well taking a ticket. So because at that point, so after I tested my blood sugar, the one time after eating the payer, and I was like, 330, something I like, started testing it more, because now I'm my own science experiment. And my fasting blood sugars were like 80s. So then I was just confused. And didn't think like, I didn't have ketones. I was like, I'm fine waiting a month to get into Endo. Um, at that point, I also just confused the Endo. So she slapped a Dexcom on me. And then ironically, I was going to be like National endocrinology conference that week that I had the Dexcom on me, like, because I was presenting research about peds. diabetes stuff. Like the week I was being diagnosed with diabetes, which I feel like just made the whole thing even more meta.

Scott Benner 17:47
Jesus, this is weird. Yeah.

Elise 17:52
So when I had the Dexcom on and I, unbeknownst to me, was apparently still having crazy low blood sugars. It's just that now I was spiking. So anytime I A, I would spike into the two three hundreds and then crash into the 40s. Yeah, like just by myself with my own no insulin like added. That's just what my pancreas was choosing to do at that moment, which, in theory, this is not evidence based medicine, this is just a spitballing, kind of similar to the process of what you might think would happen in Hashimotos, where you have hyperthyroid before you end up hypo thyroid, kind of like as the beta cells are being killed, they are releasing insulin more aggressively than they may have.

Scott Benner 18:38
Otherwise. Yeah, they have some left and it's trying too hard. Yes. Yeah. Yeah. By the way, everything about this podcast is, you know, softball.

Elise 18:48
Yeah, I just I just like to make it clear, because I

Scott Benner 18:50
thought there's nothing like evidence based here. I was like, oh, was I supposed to do that?

Elise 18:56
No, I just I like to be very clear when I when I say things because most of like as a PhD student, everything I do is evidence based most of the time except for things having to do with my own health. I just fly by the seat of my pants. That's

Scott Benner 19:08
funny. Well, I'm, I'm basically I'm just a podcaster. So I have a, you know, I just say at the beginning of the podcast that this isn't medical advice, and then yeah, do what I say the things that I noticed and you guys can take what you want from it. It was just fine. Okay, okay. I'm sorry, keep going. She

Elise 19:26
threw me on some Metformin, which I'm not really quite sure why she did that. I didn't actually end up taking it I don't think I don't think I even filled the prescription because I was like, she doesn't know what she's talking about. She was fine letting me have my blood sugar's be doing that because my agency was still like, five, nine or whatever it was at the time, okay, but I was like, I'm not particularly comfortable with my blood sugar being in the two, three hundreds for like any period of time, and I would like to start insulin. At that point. She wrote me a script for Humalog I didn't take any Lantis I've actually never We're taking Lantus ever before for any long acting insulin. And so I, she, she wrote me a script for like the junior pen. So I could do half the units because I'm really insulin sensitive. And she said, Just give yourself two units and see what happens. And that was it.

Scott Benner 20:18
Good luck. Yeah, that was the whole thing. Just jam it in there and see what goes on. And then you probably you don't seem like you were ever daunted by this. Is that fair?

Elise 20:28
I mean, I wasn't. No, but I could see someone being quite overwhelmed. Why not?

Scott Benner 20:35
Do you think I mean, I guess cuz you listen to the podcast all the time. You probably felt like you knew what to do already. Yeah,

Elise 20:39
I mean, I knew exactly what I was doing. I was very prepared. I'd had a couple of roommates that had type one before, because of this weird, special interest. This

Scott Benner 20:48
special. You just put you on like, you guys need an apartment, you have diabetes, I'd prefer someone with diabetes, if you don't mind. Well, because what

Elise 20:56
happened? Okay, so when I discovered the special interest, I did an internship at Vanderbilt, specifically in like diabetes research, and the other people in that program. Were interested in diabetes because they had diabetes. And I was just the random person with a regular pancreas at the time.

Scott Benner 21:13
I like how you like slipped in the name of the college there. I was nice.

Elise 21:18
But, so that was a chaotic time. So at that point, I started insulin, I very quickly realized that just giving myself two units anytime I ate was not doing anything. And I made myself carb ratios. And at that point, I pretty much stopped talking to my Endo. I didn't I didn't really ask her anything, because I knew pretty much everything I needed to know, from essentially listening to the podcast for as many years as I had been. That's such

Scott Benner 21:49
an odd thing. Does it strike you that way? As you're saying, even

Elise 21:55
saying it out loud. Yeah, I was just very confident in the fact that like, I don't know the first time I gave myself insulin, I was definitely a little bit weirded out. Because I just had no idea how my body was going to respond to exogenous insulin. But once I did like the first injection and realized I wasn't going to be like, 16 in an hour. I was fine. You're on your way. Yeah, it

Scott Benner 22:21
honestly it feels like if I was walking outside. And someone said, here's an obstacle course I need you to run through. I'd be like, Oh my god, this is great. I've been watching Mr. Beast videos for years. I'm all ready for this. Like, like, really? Such a strange? Yeah, it was

Elise 22:34
like, I know how to Pre-Bolus. I know, like, I got, I've got this, I can do this.

Scott Benner 22:39
Oh, my gosh. And so you're never going to know, a lot of the difficulty that people often have to experience?

Elise 22:48
I would say so probably. Yeah.

Scott Benner 22:50
Interesting. Oh, okay. Can you tell people a little bit about what you're doing for your PhD? Right now we're going to hear from a member of the Medtronic champion community. This episode of The Juicebox Podcast is sponsored by Medtronic diabetes. And this is Mark.

David 23:07
I use injections for about six months. And then my endocrinologist at a navy recommended a pump.

Scott Benner 23:13
How long had you been in the Navy? Eight years up to that point? I've interviewed a number of people who have been diagnosed during service and most of the time they're discharged. What happened to you?

David 23:23
I was medically discharged. Yeah, six months after my diagnosis. Was

Scott Benner 23:27
it your goal to stay in the Navy for your whole life? Your career? It was? Yeah,

David 23:31
yeah. In fact, I think a few months before my diagnosis, my wife and I had that discussion about, you know, staying in for the long term. And, you know, we've made the decision despite all the hardships and time away from home, that was what we loved the

Scott Benner 23:44
most. Was the Navy, like a lifetime goal of yours? lifetime

David 23:48
goal. I mean, as my earliest childhood memories were flying, being a fighter pilot, how

Scott Benner 23:53
did your diagnosis impact your lifelong dream?

David 23:56
It was devastating. Everything I had done in life, everything I'd worked up to up to that point was just taken away in an instant. I was not prepared for that at all. What does your support system look like? friends, your family caregivers, you know, for me, the Medtronic champions community, you know, all those resources that are out there and help guide away but then help keep abreast on you know, the new things that are coming down the pike and to give you hope for eventually that we can find a cure. Stick

Scott Benner 24:22
around at the end of this episode to hear my entire conversation with Mark. And you can hear more stories from Medtronic champions and share your own story at Medtronic diabetes.com/juicebox.

Elise 24:36
So my PhD is in immunology. So I'm looking at the way that our immune system responds to infection for my PhD, but for like longer term things I'm interested in autoimmune disease and malignancy. Kind of the way that our body identifies things that are self and not self. Okay.

Scott Benner 24:56
And what it does once it realizes later why It gets confused about what is what? Yes, yeah. That's interesting. I want somebody to start researching how GLP is are going to help people with type one and autoimmune to. It's

Elise 25:11
very interesting. There are a couple of groups that are doing a lot of work on G LPS in addiction medicine. And that's fascinating also, but I think the the type one world is definitely up and coming.

Scott Benner 25:24
I keep talking to people over and over again, I've got them some lined up to come on the show, using just significantly less insulin. Yeah,

Elise 25:35
I take basically no insulin, and I want to make that pretty clear. I caught my type one, at a point where I probably wouldn't have been diagnosed for another year to three years. Had STI Nanos? Yeah,

Scott Benner 25:51
yeah, no, I understand. I know you're not using a ton. But I'll say this. I've been slipping it into some episodes here and there. I've got Arden using a point two, five of ozempic every week. So what they don't even consider to be a therapeutic dose for weight loss. My best guess is that she's going to use 11,000 fewer units of insulin in the next year. Wow. That's the reduction we've seen already. That's crazy. This is absolutely not. And she's lost some weight, which I mean, I didn't look at her and think she had to but now that she's lost weight, I'm like, Oh, okay. I see that. That's yeah, you know, you look healthy. It's really fascinating. It really, really fascinating. I can't say enough about it right now. Anyway, Jesus. So what made you want to come on the pot? Like, like, really? Did you have like this moment where like, I was diagnosed, now I can go on the podcast.

Elise 26:43
Yeah, I think like many years ago, I remember like almost sending you a message being like, I should go on. And I was like, What am I doing? I have actually nothing to say about this.

Scott Benner 26:53
I Scott, I'm an engineering student who? Did you ever work with your engineering degree? No,

Elise 27:00
no. Yeah.

Scott Benner 27:03
So you went to college for four years? Yes. You completed a degree? Yeah. You got out. And you were like, I don't want to do that.

Elise 27:10
Well, so I double majored in engineering and biochemistry.

Scott Benner 27:15
All right, hold on. Let me get back to my initial question. How smart are you? Exactly?

Elise 27:21
I don't have any I don't think that I'm any smarter than any other person. No, no.

Scott Benner 27:27
Don't do that. Do you know your IQ?

Elise 27:29
I do not know. Really?

Scott Benner 27:33
Do you find yourself juggling ideas on multi levels, all at the same time? Seeing all different perspectives of something and thinking about more than one thing at once? Definitely.

Elise 27:44
But I also think that might have to do something, have something to do with the fact that I definitely have undiagnosed ADHD.

Scott Benner 27:50
Listen, I'm tired of people saying that, just because you can couple things at once. That's, that's nothing. I mean, you you finished a degree that takes a level of persistence. And like, Were you on the Adderall during college? Are you okay? No. Well, then, how many kids are using Adderall in college? By the way? So

Elise 28:06
many, but honestly, it's way worse in med school? Oh, I bet. Yeah, it's crazy. We have to take this board exam at like second year. And there Yeah, people are crazy.

Scott Benner 28:18
To get it from a doctor, or do they buy it another way? All

Elise 28:22
of the above? Something?

Scott Benner 28:26
Yeah, I'm not a fan of obviously using it recreationally to? Yeah, to do that kind of

Elise 28:32
I mean, it certainly has its place. And also, I don't I don't really get the appeal to be quite honest. I don't know that I need to be any more focused and driven. Yeah.

Scott Benner 28:42
Why do you think you have ADHD, it's undiagnosed. I

Elise 28:45
just have a lot of trouble, like narrowing in what is going on in my brain when there's a lot of stimulus happening. And my thoughts happen, like in silos that are running parallel to each other, but in a way that they all connect to me, but probably make literally no sense to anyone else. And so I flip flop from ideas pretty quickly in a way that if I don't sign post them very consciously, no one has any idea what I'm talking about. This

Scott Benner 29:22
is a problem for you. Where do you live? It's how does it present as a problem?

Elise 29:29
I have to very consciously think about the way that I phrase things and how I convey information to people and I have like formulae that I use to convey information in a way that I think it will be best digested by any given individual at any time.

Scott Benner 29:47
And what happens if you don't do that? Do people treat you oddly

Elise 29:52
think they just don't understand what I'm trying to convey

Scott Benner 29:55
is that possibly because you're smarter than they are?

Elise 29:57
I don't necessarily think that That's true, because there are also a lot of areas in which I am very unintelligent, I have probably the worst common sense you may have ever experienced in your life.

Scott Benner 30:10
You lack common sense.

Unknown Speaker 30:12
Yeah. All right.

Scott Benner 30:14
Well, I'm not great at everything. There's things I'm very bad at, as well. Like, but my brain works. I mean, I have a note in front of me here about a series that you're going to hear on the podcast six months from now, probably, if I can pull it together quickly enough. I already know what the content is, combine to format it, how I'm going to deliver it. I think that there are two companies that would be interested in buying advertising on it. I have a plan set up to record it, and to pull it all together. And then to send it out to them to see if they're interested in advertising. And I thought of that one night at four o'clock in the morning when I woke up to go to the bathroom. But does that make me weird?

Elise 31:01
No, I don't think so. All right. And

Scott Benner 31:03
it's going to work. It's really going to help people, like I think, consciously and sometimes subconsciously, about how to help people with diabetes. Yeah, most of my good ideas come in the shower. This one came in the middle of the night, when I'm not gonna lie to you. I was a little cold, and I was paying. And then I got back in bed. And I was like, trying to warm back up again. You know that like back in the covers thing? Yeah, come on, get warm, get warm, get warm. And my brain goes, what are we going to do with that idea you had about like the micro content, the shorts, we should do something with that. And I'm like, Alright,

Elise 31:34
do that. And then I text myself. It's on a whiteboard behind

Scott Benner 31:37
me. I have a giant, I have a giant whiteboard with all of my ideas for the podcast. And I stare at them for weeks and months and walk past them until one of them like smacks me in the face and says, do this. And here's how to do this. And, but, but while I was sitting there, thinking about it, at four o'clock in the morning, really knowing full well, I was gonna go back to sleep. As soon as I got warm again, I started walking through all the different arms of it, like how I was going to record it, how it was going to present it to people where I get the information from, what companies that I think might be interested in putting ads on it. And then while I was thinking about that, it also occurred to me that I've got this company, it's reached out to me about translating my stuff into Spanish, through AI, but audio, like not like text, like they would actually take mp3 files from the podcast and just turn them into Spanish speaking. And I was like, if that works, then I could do the bold beginnings and the pro tips in Spanish, it's going to be expensive. I'll have to get somebody to offset that with ads. And like so then I was thinking about two different projects at the same time.

Elise 32:49
But I don't have ADHD. Yeah, but those are still related in a way that like, I can see how you logically got between those two concepts. So

Scott Benner 32:59
you're saying that in that conversation with yourself, you start wondering if Andrew Garfield or Tom Holland was a better Spider Man,

Elise 33:07
or something completely discussed something completely unrelated? Yeah.

Scott Benner 33:10
Like I don't give a about Spider Man Scott. But by the way, is it Tom Holland or Andrew Garfield? Or do you have no idea?

Elise 33:18
I have no idea. I'm not particularly plugged into pop culture. I don't have a lot of time for that. Yeah.

Scott Benner 33:25
You don't sound like a personal a lot of time between diabetes we When did when? Hashimotos. When were you diagnosed with that?

Elise 33:32
I was diagnosed at eight about the Crohn's guy was like 1819.

Scott Benner 33:39
Is that persistent? Something you deal with constantly?

Elise 33:42
Yeah, actually, it's very interesting. I was on a medication and an immunosuppressant for Crohn's. It's an TVO. You probably see like a bajillion ads word every day. Okay, that a lism ab. And it is a drug that blocks the ability of lymphocytes or immune cells from trafficking through the walls of your certain organs. And this case, they use it to prevent lymphocytes from going into the gut. And so it can be a really specific way to decrease your immune system with respect to an autoimmune disease without completely tamping down your whole immune system. So this is a drug that I was on for about four years, I had a weird like random insurance thing happen where I got pulled off of it last January, about a year ago, because of a coding issue was the whole thing. But I stopped the drug. And about six months after that, I started having my dysglycemia that I hadn't noticed before, aka like I had diabetes now. And very recently, I have learned that that drug is actually currently in clinical trials as a drug to prevent the onset of type 102

Scott Benner 34:52
Like tz old, one of the like that idea, but less

Elise 34:57
immunosuppressive than tz Okay, I'm not, unfortunately not eligible for T Ziele. Otherwise, I probably would have taken it but I yeah, I am not eligible.

Scott Benner 35:08
So your insurance company gave you diabetes, that what you're saying, basically, yeah, we should come down on them. Yeah.

Elise 35:15
I have health care. They're going out.

Scott Benner 35:19
I like that you were willing to call them out. Oh, I will. This girl struggling she got type one. Yeah, happy. Yeah, now you're buying her insulin. Right? I mean, what the hell? And what about the Crohn's? How does that present? My

Elise 35:33
Crohn's disease is mostly in my colon, but I also have a little bit in my small intestine, so I don't absorb vitamins minerals, particularly well. So I'm anemic. Most of the time I get iron infusions. I'm low and all of like my B vitamins. D vitamins. So that the UK supplement of those, but yeah, when I'm on medication I'm I do very well.

Scott Benner 35:55
Okay. Interesting. I'm starting to think my irons a little low. I'm trying to get ahead of it with supplements, but my my fingernails feel a little wavy. Do you know what I mean? Yeah. And I'm a little getting tired. In the afternoon a little bit. Yeah,

Elise 36:10
I can't, like I can take so much iron orally, and I will not absorb it ever. So when

Scott Benner 36:18
I mix it with vitamin C, at the same time, I get a little better pickup with it.

Elise 36:22
I've done all of the things. I'm taking, like 80 times the recommended dose at one point like, yeah,

Scott Benner 36:30
see if it would stick to you. So yeah, no, it sounds like you're experiencing something a lot more significant than I am. But I still like, you know, I can get about every six, nine months and like my is my iron low.

Elise 36:41
Yeah. Once I have the infusion I hold it for like a year or two. It's just getting it into my body is hard

Scott Benner 36:47
and drifts down. Yeah. The infusions are crazy. I don't fantastic. They're fantastic. They changed my life actually. Yeah. Well, Jesus, sorry. So you've had Hashimotos taken just before for that?

Elise 37:01
I don't I'm not I'm medicated for it at this moment.

Scott Benner 37:04
What's your TSH?

Elise 37:05
I think my last TSH was like 1.2.

Scott Benner 37:09
Yeah, that's good. Okay, yeah. You're not taking anything for that. krones you were doing an injectable they took the injectable from you. Do you think you'll get it back? Yes,

Elise 37:19
at the moment, I'm completely off of drug because I'm going to have a scope in like 14 days or so. And then they're going to take biopsies and try to petition to my insurance company that I do, in fact, need some medication, which will be very interesting. Maybe I suddenly won't need insulin anymore. If I go back on it.

Scott Benner 37:38
I would be, you know, whatever. That wouldn't be as nice as i Are you which way did they go for that? They go down? Both ways. Yeah, good times.

Elise 37:49
Yeah. I mean, honestly, people people lament that and a lot. I don't think it's that bad. But also I have Crohn's to start with. So it's really just like a Tuesday for me.

Scott Benner 38:00
Sketchy on both sides. That's okay. All right. Yeah. Well, good luck, I hope you are able to tuck the insurance company into giving you what you need. Thank

Elise 38:06
you. Thank you. Yeah, that's quite so then I also I very forcibly forced my endo into putting me on a pump. Probably about three months after I was diagnosed. Why did you I never went off on any long acting. So I just started with like, playing around with my basals. Right. I also never good training. I just put in whatever I felt like was that all worked out? Yeah, it worked out great.

Scott Benner 38:35
The doctor doesn't argue with you at all at this point. Not really.

Elise 38:39
I think I think the results like speak for themselves. So she's less she's less worried about it. But very interestingly, when I started I was saying that how I was spiking really high and then dropping really low before I started on insulin, right? When I take insulin, the drop is completely gone.

Scott Benner 38:56
It's because your body's your body's not trying. Yeah, so if I

Elise 38:59
give myself insulin and I even if I do spike a little bit, I will not. I have far fewer lows on insulin than off which I find fascinating. Okay.

Scott Benner 39:10
No, I did too. It's a little strange. Because why would your body know that you've put in insulin unless your Pre-Bolus thing so much that your blood sugar is not changing so your body never tries to impact it?

Elise 39:21
Yeah, I mean, I don't really I have pretty high standards for where I like to keep my glucose so I don't spike enough I don't think in order to trigger that insulin release from my remaining beta cells because I do have a measurable C peptide still.

Scott Benner 39:40
Yeah, you do. All right. Any other autoimmune in your family feels like there has to be Yeah,

Elise 39:48
yeah, my mom has like vitiligo Hashimotos, many many and autoimmune.

Scott Benner 39:53
Any Raynaud's? I don't think so. cold fingers. What are we talking about? Seriously? joints.

Elise 39:59
No, no. All right. I'm aware of I think I have a couple of people with RA and my family history, some celiac disease.

Scott Benner 40:05
Oh, how Caucasian Are you guys? Irish? Barry? Are we talking about Italian? Okay. Okay. It runs through your mom's Italian.

Elise 40:14
No, my dad's side is Italian. My mom's side I think is? I don't know, actually, my dad would be very annoyed

Scott Benner 40:22
to you. You don't know your your mom's lineage is.

Elise 40:24
My dad wrote a book on our ancestry too. This is really embarrassing. I think she's Scottish.

Scott Benner 40:31
Oh, that makes a lot of sense. Yeah, yeah. The Italian is not where you got the autoimmune. My again. Yeah, I'm not being very specific. I'm being like, what I've learned talking about evidence is not evidence based. By the way, that'd be a great title for your episode. This is not evidence based. But that Scottish thing. I get that, like, stay away from the pasty people if you don't want autoimmune in your life. Yeah,

Elise 40:55
so. So we have a lot of the autoimmune but so I, I just kind of put myself on to the Omnipod. I was really trying, I wanted to loop because I thought that was just the coolest mesh ever of being able to use my engineering degree and like write some code. But my insurance for whatever reason would not approve a dash. And like I tried for like four months to get them to approve it. And then the first time we tried with Omnipod, five it went through. So I've been using Omnipod, five and manual.

Scott Benner 41:23
Where do you get your insurance from through the program? You're in? Yes. Yeah. I wish I should have been a doctor, I'll take eight years to do something. I mean, how's the house? There's no bugs.

Elise 41:34
They don't they don't provide our housing. Oh, but

Scott Benner 41:38
the stipend I mean, are you able to like, like, are you living? Okay.

Elise 41:42
I mean, I worked for several years prior to starting the program. So I was in a position where I was able to be financially comfortable. But I think if you came straight from undergrad, you might have a hard time

Scott Benner 41:54
I say it's not that much money. No, I was thinking of trying it just to take a break. This real world stuff in the Navy. Yeah. So it's a forever student. Yeah, I get somebody to flip the bill. I pretend I want to be a doctor for a little bit, you know, then I go, Oh, nevermind, I gotta go. Well, I swear to you, that's a lot of any chance you're going to change your mind seven years into it.

Elise 42:17
I really hope not. I am a person that is more on the research side than the clinical side, which is, I think, more in the minority of physician scientists, which is kind of like what our field is called. Yeah, I generally like the ideal when they talk about like, what are physician scientists? Like 80%, research 20% Clinical to like a day in clinic per week. And then the rest doing research is like what they like, forecast is optimal. But not everyone goes that path. People end up in industry, people completely ditch the PhD and just work clinically because they get paid more. Some people go into specialties that make it more difficult to maintain research. Yeah.

Scott Benner 43:05
So you kind of have to just let everybody find their way to fill all the needs that exists. Yeah. That's I'm just saying you, me, you bailed on that engineering thing. I'm just wondering if you just

Elise 43:15
know, I still I'm glad. I'm glad that I majored in engineering because I do have a bit of an engineering flavor to my immunology, PhD. I guess you could say, I'm interested in like, high throughput machinery to look at cells on a single basis, and like how we create those machines, and also how we analyze huge amounts of data with computer programming. So it's all related. I didn't just completely drop it.

Scott Benner 43:44
I'm just teasing you. It's fine. Don't get upset. You're not upset.

Elise 43:48
No, I'm not sad. I would never i If I could go back and not do a degree in engineering, I would absolutely not do it again.

Scott Benner 43:56
You went two years into your med school before you switch back to the PhD for this gap here. Did you guys cover diabetes yet in med school?

Elise 44:05
Yes, yeah, I had finished my second. So my school does a one and a half year pre clinical curriculum. So you learn everything about all of the organ systems in a year and a half, and then you go into clinic and like keep learning, like practical skills essentially after that. So I had finished all of my pre clinical coursework. When I was diagnosed,

Scott Benner 44:27
did you learn enough in med school to help people with somebody there diabetes?

Elise 44:31
We did do a simulation one time on someone in DKA. So I think I had a pretty decent idea of like, how to manage acute DKA. Like certainly not by myself as a second year med student.

Scott Benner 44:43
You know what I'm saying though, at least I'm trying to figure out like, what's the amount of information people get about diabetes? Three,

Elise 44:49
we were taught more about how to handle diabetes in an acute setting with respect to type one in DKA. And that was pretty much it except for the fact that like, type ones have to be on insulin. But there was no, like further education. I mean, I guess they kind of go into like sliding scales and that kind of thing, but it's

Scott Benner 45:13
about where it ends. Yeah. Define acute for people.

Elise 45:16
Acute as far as like you show up at the IDI, you know, have new onset type one diabetes, like or are in DKA. That type of management setting I would say is what med school like prepared us more for. But then I also will say that when I was diagnosed, so I'm 28. I was 27, when I was diagnosed, the number of my peers and also physicians that were like, aren't you old for? Like, okay.

Scott Benner 45:49
They don't really know anything. You're saying? No, no idea. Yeah, no, I don't think anybody does. That's okay. I'm not blaming you or them or like anybody else. I just don't think it's I mean, I think medical school is what it is, right? It's yeah, they

Elise 46:01
teach you how to save someone from dying, not necessarily how to manage them in everyday life, which is like, also, when I was in the hospital, like I signed a thing to be like, I am in charge of my insulin and will like, take care of that, which they didn't really care about. Because I was on the orthopedic ward. Honestly, they were just thrilled to not have to deal with it themselves. Yeah. But

Scott Benner 46:21
that's my finding is that mostly they, if you can do it, they're like, Oh, good, because I don't know what I'm doing. Yeah,

Elise 46:27
they did try to fight me one time, I was like to add something because they'd given me a bunch of steroids in the car. And I was like, I'm giving myself insulin now. And they're like, No, you can't, you just ate. And I was like, what you I don't think you understand.

Scott Benner 46:39
So a person saw that you had recently given yourself insulin for food. So they thought that meant you could not have any more. First

Elise 46:46
of all, he told me, I shouldn't have tested my blood sugar, because it wasn't four hours after the meal. And that even though my blood sugar was 283, and I knew that, like I missed and I needed more insulin, he was like, You can't give yourself more insulin.

Scott Benner 47:00
I think it's incumbent upon me to say that a lot of times the medical people you're running into in your life, are regurgitating stuff off of a one sheet, you know, bullet pointed list that they learned in med school years ago, they don't know why there's what that

Elise 47:19
was that was an RN? To be fair, yeah. I

Scott Benner 47:22
don't know, Well, who else should I expect to understand diabetes, if I don't expect a nurse to do it? I

Elise 47:27
mean, I think that it is a very unique disease, and the fact that the individuals who have it are more experts than the people that treat them, because of the learning curve, of having to deal with it day to day. And personally, like, from my perspective, I think that that's true of nearly every human condition. And that, like, our patients are the people that are living this life every day, and like they are really the ones that like, like you get to make the plan and like I'm just going to support you in whatever way I can do by giving you the information and helping you make the best decision that you feel is right for you. It's about your experience your lived experience with it. So I I don't know how much like they can actually teach you about what it's like to live with any disease.

Scott Benner 48:18
I agree. I mean, I've been doing these series now for a while with doctors and talking to doctors and listening to what doctors know about what they see at their jobs. And I just got done interviewing this endocrinologist the other day, who's a young guy and has type one for you know, since he was like, I think 18. And I'm like, so what's the answer? And his answer was a lot like yours like, well, it's, it's kind of on them, you know, after a while, and I'm like, gotcha, get just no one if there's a bigger answer. It doesn't exist right now in the minds of the people who are doing the work, or they can't get into practice or anything. Can you talk about the thing that you told me before we started recording or can you not talk about that? I

Elise 49:01
can talk about it more vaguely Go ahead. So as a part of my time during med school, I have done some work looking at basically case reviews and chart reviews of every individual with a type one diabetes diagnosis under the age of 18. That was admitted to our major academic institution over the course of two years. And in this analysis, we are looking at the amount of time between a hypoglycemic, blood glucose coming through and the time to recheck going off of ADA guidelines seeing how close to standard that is looking at individuals that were admitted with DKA. And looking at how quickly they were switched from IV back to sub q insulin and whether or not that was done in the appropriate manner. And just in general errors of insulin dosing, hypoglycemic management that may lead to further DKA or A longer admission over the course of any of those individuals time. And then we stratify that by a whole bunch of things like, you know, what was their agency when they came in? Like, is this a person that has had multiple admissions over the course of that period of time? Was this their first onset? etc? And can we stratify? What is making those errors or incidences more frequent? And how can we work to prevent them?

Scott Benner 50:25
What do you think you're going to learn? And what do you think you can present that would offer another idea?

Elise 50:31
I don't know that I have a great solution. But I can tell you that there are problems. What which I think we all know, but has not actually been published, right? Every person that has type one in their lives knows that when you are in an acute care medical situation in the hospital, your type one is not necessarily being managed, as well as you might want it to be managed. When you're at home, depending on the person, right, every person manages very different. The type of person that's typically the audience for your podcast, I would say, would have that feeling. But there actually is no evidence base to confirm that. So a lot of this research that we are trying to put forth right now is to demonstrate that that is, in fact a problem, because we can't lobby for change unless we demonstrate that it's a problem. So that's the first step is just proving to academia at large that we are bad at this. And this is proof of that

Scott Benner 51:32
people's outcomes aren't enough proof.

Elise 51:34
I mean, I think that like an individual case report, here and there have been done, and it has been well studied in the adult population. And of course, patient stories are the most important. But as far as getting funding for change to be made in a way that is actually like, going to make improvement, you need to demonstrate on a larger scale, like proof that this is a recurring problem.

Scott Benner 52:02
Okay. They should ask me, I talked to a lot of people. Yeah, I think we don't hear from most of the people who are not doing well. Yeah,

Elise 52:12
I mean, I think to the point of this particular study is looking at it from more of an unbiased situation. So we have pulled every single chart of every single type one that was at this hospital, and every single data point from the entire time they were admitted, whether or not the bad admission was related to their type one or not, and have very clear set algorithms that pull out data that don't match with what should have happened, an individual might not even know that certain mistakes or differences to what is like the standard of care might not have happened. And so this enables us to pull that in a way that is a little bit more unbiased. Wish you

Scott Benner 52:58
luck with it. It's my contention that when you set expectations, at higher numbers, or with more variability, especially in a setting that's medical, you then are programming people at home to be accepting of those limitations and variables, instead of thinking that maybe they're impactful. Yeah. And so yeah, that's a shame, really, because you don't realize it in that setting. You know, you're in the hospital for a couple of days, and somebody says, Oh, we're gonna leave your blood sugar at 230. It's okay. Well, then you go home thinking 230 was okay, like the nurse said, so? Yeah, you know,

Elise 53:33
I mean, even for myself, I obviously have very frank conversations. I've switched on the providers now. And then I do really enjoy my Endo, but she definitely thinks that I have more stringent glucose, like management guidelines than are necessary. We do. I wouldn't say arguments, but points of contention over that, because I'm a person that I really don't want myself over 130 ever if possible. That's not to say I don't go through 130 I do I have diabetes. But I am not going to let myself sit in the 130s. And if I see a blood sugar that's in the 140s 150s I don't entertain that. Yeah. Like since I've started insulin, I have never been over 180

Scott Benner 54:20
We give you a doctor that endocrinologist diabetes, and I bet you they'll all of a sudden think does

Elise 54:26
have diabetes.

Scott Benner 54:29
Yeah. Oh, how old? I

Elise 54:31
don't know. I would say she's in her 30s. Hmm. Interesting.

Scott Benner 54:34
And when you come to her, doing what I'm assuming is better than she's doing for herself personally.

Elise 54:42
Well, I will say to I am honeymooning very aggressively. So I have a little bit of an edge. You're very

Scott Benner 54:47
nice to like to make sure we keep saying that. But but that's not my point. My point is is when you come to her

Elise 54:52
I have no Basal half the day level of honeymooning. Yeah, that's the

Scott Benner 54:57
same but she doesn't look and go I wonder what this person and knows that I don't know, she just thinks you're putting too much effort into it.

Elise 55:03
I mean, I do think that like, I am a very type a high strung person. And I think that there's a part of her that thinks that I'm putting too much time and effort into this.

Scott Benner 55:15
Do you think that's happening?

Elise 55:16
I think at times, I think that there are certainly times where the amount of brain space that I put towards my diabetes when like, at the end of the day, are those 15 minutes at 160 really gonna be the kicker, like, No, you know, the kicker.

Scott Benner 55:31
To me, the thing that makes you kick the bucket, is that what you're Yes, yeah. Yeah, I'm not saying your blood sugar can't go to 160. And that, you know, that's not what I'm saying.

Elise 55:41
I do i per separate on that. So I think that like she is legitimate and some of her concerns,

Scott Benner 55:47
okay. Is there a way for you to accomplish your goals without over focusing?

Elise 55:53
I mean, I think that's just kind of my nature in general. I'm working on trying to like find a little bit more of a balance with it, especially because I know as time progresses, it will become probably more and more difficult to manage my blood sugar's as I thought honeymooning. Alright.

Scott Benner 56:11
You're the first thing to say, per separate on the podcast, in case you're wondering. I use a lot. I try not to whip out my big words, but that was good. I like that.

Elise 56:22
Yeah, no, I sit with it a lot. I don't know. But yeah, I take I take tiny amounts of insulin, Tiny.

Scott Benner 56:29
Well, are you fearful that when your honeymoon ends, that you won't be as good at this as you hoped to be?

Elise 56:35
Definitely. I think that a large part of me thinks that I'm only as good at it quote, unquote, as I am because like, I call it diabetes light, like li te. Or like, I have one. One individual that has diabetes that causes diabetes. It's just like, the the easy version. Like I have like the bumpers on while I'm playing but like, well, I'm bowling.

Scott Benner 57:00
Yeah, give me your honeymooning. So it's not. It's yeah, what it is. Yeah. But I'm wondering if like, psychologically, you're concerned that when the honeymoon ends, that you're going to overwhelm yourself with worrying? Or is that your doctor's concern?

Elise 57:15
I think that she that's probably her concern. I mean, I'm worried that I won't be able to maintain as tight of control as I have now, which is probably true. To be quite honest. I would think so. Yeah, yeah. But I also think that I'm probably underplaying the amount of tools that I have, and that at the end of the day, it's the same, like my brain is using the same algorithm, just with different volumes of insulin. I agree. That's not going to change the way that insulin works. And the way that my body responds is not going to change. It's just the amount of insulin at each of those encounters that will Yeah, no, I agree, which already happens. Like my, the amount of insulin that I need, day to day varies between like, two units and like 20 units at any given time. So part of me also thinks about that, because I think most of me thinks that it's gonna get harder. But then part of me is like, maybe if there was just an ounce of consistency, like if all of my beta cells were gone, that would be a little easier. Yeah. Because I never know,

Scott Benner 58:13
perhaps you'd be able to show yourself that you do know what you're doing. Yeah, I think you're gonna be more experiences. And they'll come obviously, as the honeymoon wanes. But it sounds to me like you'll be okay. I mean, I would hope so. So you're not overwhelmed by it? Or you?

Elise 58:29
I wouldn't say I'm overwhelmed by it. I think that there are there's an appropriate amount of concern over managing it. Yeah. But

Scott Benner 58:37
if I find you in a quiet moment, you're not staring at a wall going. I'm gonna kill myself with a diabetes like nothing bad's. Right. No,

Elise 58:43
no. And I also, I do think there are things too, that I like, because I have more chill vibes, diabetes at the moment, I'm probably not as concerned about as I should be, for example, low blood sugars really don't concern me. And they probably should. It's very different. Like for people that I'm caring for, like interacting with, I have very different expectations and standards than I do for myself, because I know my body very well. And I know that like at this moment in time, my alpha cells, which are the, like, Sister cells, the beta cells in the pancreas, which produce glucagon, that helps you raise your blood sugar when your blood sugar is low, that's mine are still functioning really well. So I don't need to catch my lows as aggressively like I can sit with a 70 double arrow down and know that I'm probably not going to need to treat that which I think scares the hell out of my partner.

Scott Benner 59:35
I beg it does all that beep beep beep and you're like, that'd be probably gonna be fun. Yeah. Like, are you sure? Okay. All right. I'm good with all this good talk a little bit about you said to me before we started recording. you babysit a type one?

Elise 59:51
I do. Yes.

Scott Benner 59:53
How did that go? Yeah.

Elise 59:54
So he's two and he was diagnosed, I would say about A year ago, so he was just like 1214 months, I think when he was diagnosed, it's helpful that we both actually I babysat him last night and he put my Omnipod on for me in the most uncomfortable position on my arm that ever could possibly exist. But I'm just vibing with it for three days, because he wanted it there. And I was okay with that. But yeah, it's very interesting. We actually the two year old and I take very similar amounts of insulin and have very similar, almost all of our settings, like our pump settings are the same, except for my correction factor is a lot more aggressive. But like our insulin to carb ratios, and our bagels are very similar. But his like, correction factor is like one to 200. And mine's like one to 50. Okay.

Scott Benner 1:00:46
One to 50 is one to 100. Yeah. Oh, that makes sense. Do you make decisions for that kid while you're babysitting about their insulin? Are you following rules from parents?

Elise 1:00:57
It's a little bit of both. So they have I set up with them, like, you know, where do you feel comfortable having his blood sugar being also knowing that he's two, he doesn't know when he's low or high. And you can't always reliably get him to consume something. So running a little bit on the higher end is what they're more comfortable with. And I'm plenty happy to abide by whatever they're comfortable with. Yeah, he actually he just recently in the last, like, month or so switched into auto mode. And that's made a huge, huge, huge, huge difference for him.

Scott Benner 1:01:33
Well, there's a lot going on here.

Elise 1:01:35
I would love to do auto mode, but I really don't want to deal with well, actually, technically, I talked with the Omnipod reps. And they said that I should not do auto mode, at least not yet.

Scott Benner 1:01:44
Because you have time. So you absolutely don't need basil. Well,

Elise 1:01:49
yes, there's times that I absolutely don't need basil. And also the amount of insulin that I get from basil, versus the amount of insulin that I get from boluses is like 10 to 90%. So like compared to like a one to nine ratio, essentially. And because the algorithm is built in a way that it's estimated on a 5050 split, they basically said I would break the algorithm to try with it trying to figure out how because my TDI would be so much higher than my basil are requiring.

Scott Benner 1:02:22
I actually don't see how it could possibly work for someone in your situation. Yeah,

Elise 1:02:25
so I'm just vibing in manual mode, which works for me anyways, because I have a g7

Scott Benner 1:02:30
Yeah, that sounds good to me. You're doing great. So what do you do? Do you get like zero basil for a while?

Elise 1:02:35
Yeah, my basil will have like three basil programs, one for when I like suddenly don't have diabetes anymore, which is like I think a whole two units a day. And then I have one Basal program that's like my normal, which is two and a half units a day. And then I have a high Basal program, which is like five units a

Scott Benner 1:02:55
day. How often do you find yourself not needing anything? My

Elise 1:02:59
Basal is zero overnight, always. I need no basil overnight. Where's your blood sugar sit then? It depends. I would say most of the time unless I have like a high fat high protein meal for dinner. I will sit in the 80s or 90s overnight, but I do have a high fat high protein meal and I don't do an extended Bolus or I missed the Bolus a little bit then I might sit and like the one hundreds 110s But nothing higher than that pretty much ever

Scott Benner 1:03:26
wonder how long it'll go on for? Yeah,

Elise 1:03:29
so I have no Basal overnight always. And then my my basil just kind of like increases throughout the day. I need the most basil like in the evening.

Scott Benner 1:03:38
I see. That's really interesting. But

Elise 1:03:41
again, I've never been on Lantus. So I like Randy long acting, so I have no idea what that is in comparison.

Scott Benner 1:03:47
Yeah, I don't know if that matters. I'm just it's just super interesting that, you know, no need overnight. 110. I mean, obviously you do have, let's be clear, you obviously have a Basal need overnight, because your blood sugar's Well, my body is just creating it. Yeah. You know, if you didn't have diabetes, I mean, your overnight blood sugars would be in the 80s. Probably. Yeah. Yeah. So there's 30 points there. You can maybe get away with some basil overnight, on

Elise 1:04:12
certain nights. Yeah, I would say on most nights I run milk when I was last night

Scott Benner 1:04:17
because you could get low overnight with basil. Yeah, gotcha.

Elise 1:04:21
Last night, I was running mostly in the 90s. Okay, but then I occasionally like will go into like this 70s 80s and then pop back up. And

Scott Benner 1:04:32
I understand. Okay, listen, is there anything we haven't talked about that we should have? I

Elise 1:04:37
don't think so. One thing I think is very interesting, just from like, I'm a numbers person you may have gathered, I had my endo do a little experiment for me, because I wanted to know how accurate GMI percent was. So I did. I had my GMI from my Dexcom data. And then I had our poll and agency which is an average from the last Three months approximately. And then I also had her do a fructose Amin, which does an average from approximately the last three weeks. And the difference between all three of them just kind of blew my mind a little bit. And then that just makes me think do we actually like do we does anyone know what their blood sugar is ever? Because I don't think so like we're just all doing our best with like what we have? And because all of the forms of measurement have some amount of error and or are not the best measures, and we were just doing our best, but I find it interesting like how much again, we per separate over this one number, when in reality that's probably not even your blood sugar. Probably close. Yeah, I've

Scott Benner 1:05:42
had that thought I've had that thought since day three with diabetes. When the first time the they came in with the meter that they gave Arden and the meter that the hospital had. And they were so far off from each other. I was like which ones right? Yeah, she's like, go with the one we get. We're giving you I'm like, but that one says something different? No,

Elise 1:06:03
yeah, but my CGM, I think was five, seven. And then if you might be one C was five one. And then my fructose. I mean, it's like a weird number in the two hundreds, but like equivalents to the A one C of like, five six, I think. Yeah. So I don't know. I thought that was interesting. The other thing is, too, I this week had this weird thing happened and thinking about like, what is accurate? Who knows? My G seven refused to calibrate I've never had like, I've never put in a calibration before. And it's just like, No, you can't, doesn't want you to do that. Yeah, so I was reading like 110. And I felt like I was dropping. So I did a finger stick and I was 47. So I went to calibrate it. And I it was the first time I had calibrated it. It was like day three of the sensor. And it rejected my calibration. It just said no.

Scott Benner 1:07:00
No, thank you. I don't know that that's ever happened before. To me.

Elise 1:07:03
It was the first time it's happened to me. It was very surprising. But yeah, this I still have the sensor on now this happened like a couple of days ago. They got itself together. And it was like accurate again the next morning. But weirdly ever since then, it's had like breach sensor errors every, like 20 minutes. I just have like gaps of data. So it's it's on its way out.

Scott Benner 1:07:24
Is this sensor like the one that's on oddly, because the kid pick this spot or no is that? No,

Elise 1:07:29
that's my Ami. Like in a weird spot underneath my arm right now.

Scott Benner 1:07:36
You didn't look at the end of what about over here?

Elise 1:07:41
I don't know I was trying to,

Scott Benner 1:07:43
you'd be like, No, that's not where it's going. Let's do it.

Elise 1:07:46
I didn't really I don't put like pads on my arms that often. I'm not really into it. So I hadn't tried many locations on my arms. And I was not aware that this was going to be as uncomfortable as it is. But it's only three days and I can survive.

Scott Benner 1:08:02
Barton is very specific about where she puts her stuff. Yeah, I

Elise 1:08:06
am also very specific about it because I tried for the first time last week putting an Omnipod on my thigh. But I am I'm a track athlete and a horseback rider and I really really like muscular thighs and I don't think I can use my thighs from the pods they Yeah, I don't think it'll work out.

Scott Benner 1:08:28
I've heard you call out your your muscular thighs. What college you went to a lot of a lot of like quiet like primping from you I hear it.

Elise 1:08:39
Oh goodness. No. Supposedly though, the the muscular thighs are why my incision opened when I had my surgery on your hip pelvis on my hip. Yeah, my my surgeon goes you know, this is a complication. I usually only see a young buff boys and I was like, Is that a compliment?

Scott Benner 1:08:57
Please don't use the word buff boys with me. Yeah,

Elise 1:09:01
I don't know what you're going for here, bro.

Scott Benner 1:09:04
Anyway, I can call this episode young buff boys where when people just be so disappointed when they get to it. They're like, Oh, you tricked us. So a lot of moms that listen to this show. I might be maybe I should do

Elise 1:09:18
your titles or one of my favorite parts of the episode.

Scott Benner 1:09:21
Thank you. I appreciate that very much. I've got that jotted down for you here not even kidding.

Elise 1:09:27
Oh my gosh. What evidence base was a good one? All

Scott Benner 1:09:29
right. Probably what it's gonna be though.

Elise 1:09:33
Yeah, young boys came in too late there. Yeah, I'm gonna

Scott Benner 1:09:36
go with not evidence based. That's what I'm going with that that's what I'm doing. Nevermind, but non. Yeah, the buff boys things for me. All right. Well, I wish you a ton of luck, Elise. I thank you so much for being a person who listened to the show didn't have diabetes. That was really nice of you. Yeah, well, it helped me out clearly. Who knew? I said before we started recording. I think you just surrounded yourself with so much diabetes you had no choice but to get it.

Elise 1:10:00
Yeah, exactly. Yeah. Apparently I did have a great aunt or something that had type one. No one ever told me until after I got type one. But

Scott Benner 1:10:09
what is a great aunt? I don't know the distinction. My grandmother's

Elise 1:10:12
sister, right?

Scott Benner 1:10:14
Is that a great aunt?

Elise 1:10:15
I'm pretty sure.

Scott Benner 1:10:16
I'm looking at the aunt of one's father or mother. Either side. Really? the aunt of a father? Yeah,

Elise 1:10:27
so my grandmother, sister. You don't know them? Right. I know. She died. Apparently when she was like 11 of type one. Supposedly.

Scott Benner 1:10:34
Look at you bumming us out the end. What the hell? I didn't know her. Oh, well, if you didn't know her, then it's fine if she's dead. I mean, as long as you didn't know her, I guess. Oh my gosh, how did I not know what a great aunt was? Is it Aunt aunt?

Elise 1:10:54
I think either. We didn't even get I did live in Australia for most of high school. We didn't even get there. Wait, how we got transferred there for my dad's job.

Scott Benner 1:11:04
That's your dad's job was writing books about something?

Elise 1:11:09
No, no, it was government contracting. But he wrote a book. No, he did that in his like, free time.

Scott Benner 1:11:15
Yeah, that's how people do it. They just write books for free times

Elise 1:11:19
ancestry. Are you and he's similar? I would say so. Yeah,

Scott Benner 1:11:24
I'm thinking so people don't write books. And if I've written a book and not one nearly, I'm assuming detailed as your father's was. And it's a lot of work. It takes up a ton of time.

Elise 1:11:34
Yeah, I don't know. He imports some cheese from like the town in Italy that like our relatives like came from and like he has to get special. Like you can only get it if you're a descendant of these people. I don't know. It's really into it.

Scott Benner 1:11:46
What's happening here? No idea. Actually, I'm letting you go now. Because that I do think that you're going to be wildly successful, and it's making me upset?

Elise 1:11:59
No, I hope so. I think I do want to go into peds and I'm contemplating endocrinology, just the only problem is, insulin is the only hormone I actually care about. So gosh,

Scott Benner 1:12:10
I don't know, I people talk about smart insulin and coming up with that kind of stuff. And I mean, it would mean so much to people, if they just didn't get low blood sugars, you know, like that. One thing would be such a big deal for everybody. So I'm hopefully one of you smart kids will figure it out. Hopefully, yeah. Is there gonna be you? I mean, I don't want to pressure you. I don't

Elise 1:12:30
know. I don't know, I probably. To be honest, I probably won't state now that I have type one, I probably won't stay in the type one arena. Just because it's a little too close to home. I'll probably end up in oncology. Maybe rheumatology,

Scott Benner 1:12:44
that's fine. abandon us at least that's fine.

Elise 1:12:48
I'll still stay connected. adjacently I completely

Scott Benner 1:12:50
understand. I don't know how you would want to be involved with diabetes 24 hours a day. It's gotta be really difficult. No, I

Elise 1:12:56
think it's fascinating. I like it. It's just mainly the thing is that like, endocrinology is a lot more than just diabetes. If it was only diabetes, I think I'd be more into it. Really? Yeah.

Scott Benner 1:13:07
Just I'd be I'm going through what you just said there. If it was just diabetes, you can't you can be an endocrinologist. But you don't want to be in practice, though. Right?

Elise 1:13:17
Well, so I do I want to be somewhat in practice, just not full time in five

Scott Benner 1:13:20
days a week. Yeah, yeah. Yeah. Cuz then. Okay, so then endocrinology is too broad for you. Is that right?

Elise 1:13:27
I mean, it's not necessarily that it's too broad. It's just that its breadth doesn't perfectly overlap with my interests.

Scott Benner 1:13:33
We want you to be interested, we want you working hard, not just showing up at work all half assed and just tripping through it. You don't I mean,

Elise 1:13:40
I just I want I want something that I really care about. And like, I think endocrinology is interesting, but I think I care mostly about insulin, and that's pretty apparent, and the other hormones would definitely not get their attention that's needed.

Scott Benner 1:13:56
All right. Well, I wish you a ton of success. And I hope one day you're able to pay your bills. Thank you very much for doing this with me.

Elise 1:14:04
Yeah, of course, hold on one second.

Scott Benner 1:14:14
Mark has an incredible example of what so many experience living with diabetes, you show up for yourself and others every day, never letting diabetes to find you. And that is what the Medtronic champion community is all about. Each of us is strong, and together, we're even stronger. To hear more stories from the Medtronic champion community where to share your own story. Visit Medtronic diabetes.com/juice box. Don't forget, we still have Mark's conversation at the very end. It's a terrific kind of mini episode about 10 minutes long. That goes deeper into some of the things that you heard Mark talking about earlier in the show. A huge thanks to us, Matt for sponsoring this episode of The Juicebox Podcast. Don't forget us med.com/juice box this is where we get our diabetes supplies from you can as well use the link or call 888-721-1514 Use the link or call the number get your free benefits check so that you can start getting your diabetes supplies the way we do from us med. 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 Ford slash juice box. A diabetes diagnosis comes with a lot of new terms and you're not going to understand most of them. That's why we made defining diabetes. Go to juicebox podcast.com up into the menu and click on defining diabetes to find the series that will tell you what all of those words mean. Short, fun and informative. That's the finding diabetes. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community check out Juicebox Podcast type one diabetes on Facebook. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com