#1937 Immunostimulation with Dr. Faustman
Immunostimulation with Dr. Faustman
Dr. Denise Faustman of Harvard and Mass General returns to explain her BCG vaccine research in type 1 diabetes — a phase 2 trial, a surprising metabolic discovery, and where it stands now.
Jump to a moment
- A different bet than most of the field. Dr. Faustman recounts starting in islet transplantation, concluding the real problem was the underlying autoimmunity, and pursuing immune stimulation rather than immunosuppression. Her group landed on the TNF pathway and, rather than develop a costly new drug, chose BCG — a generic tuberculosis vaccine used for about 125 years that triggers TNF release. She stresses this is her research program's approach, described for a general audience.
- An unexpected finding at year three to four. After a phase 1 trial published in 2012, following patients long-term revealed A1c dropping years later in people with decades of type 1 and essentially no pancreas function (flat C-peptide). Because insulin from the pancreas couldn't explain it, her team paused publication to investigate the mechanism. These are her group's trial findings, not established standard-of-care outcomes.
- A metabolic defect she says hadn't been described. Metabolomics pointed to accelerated glycolysis — the Warburg effect, or aerobic glycolysis — in the white blood cells of people with type 1, which she describes as immune cells burning fat instead of properly using sugar. Her account: BCG shifted the lymphoid system back toward using and regulating glucose, and the magnitude tracked with how young a person was at onset.
- Where the phase 2 pivotal trial stands. Dr. Faustman reports about 660 people treated with BCG across her program, first data released at the ADA, and that at year eight roughly 41% show a normal A1c — while still using insulin, with time in a tight range and fewer lows. A fully enrolled 250-child pediatric trial is underway. She frames results as trial data still being followed, not an approved therapy.
- Not available to buy — and how to follow it. BCG for type 1 is not FDA-approved for this use and can't be purchased for it; her next stated goal is drug approval, priced to be affordable. She points people to the trial registry at diabetestrial@partners.org and notes many participants found the research through this podcast. Nothing here is medical advice.
- Register interest: diabetestrial@partners.org — The email Dr. Faustman gives on-air to hear when trial slots open; her immunobiology labs are at Mass General.
- Dr. Faustman's first visit: episode #120 — Her earlier conversation with Scott, roughly nine years ago, on the BCG work in its earlier phase.
- Clinical Trial Tracker — Scott's searchable tool for looking up type 1 trials, including immune-intervention studies like this one.
Every word of the conversation
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Denise returns — nine years later2:31
My name is doctor Denise Fausman. I'm sitting here in Boston, and I lead the immunobiology labs here at Harvard Medical and Mass General Hospital. And, we do and have done a lot of work on type one diabetes for many years.
Denise, you've been on the podcast once before, but it's gotta I'm try I'm looking right now while you're talking, but it's gotta be years ago, I think.
Yeah. More than fifteen maybe. Really? Was it a mouse experiment?
I don't I don't even know. Well, I'm gonna try to let me let me see if I can find out real quick.
It might have been a
mouse experiment. You were on episode 120.
Oh my god.
Do you know I have 1,900 episodes out now?
I see. Yeah. So was the founder.
Go ahead. Yeah. Well, I mean, jeez. Oh, yeah. Let's let me read the thing.
It says her research into the BCG vaccine and its role into regulating t cells and immune system discussing phase one and phase two of the trials and the effect the vaccine has had on blood sugar for type one diabetics.
So Okay. So, like, ten years ago at least.
It was it's 2017, it says. July. Oh, it's July now. Hold on. Eighteen, nineteen, twenty, twenty.
That's nine years ago. Exactly.
Yeah. Almost ten. Yeah.
Yeah.
There we go.
So tell
so tell happened.
Wait. What's happened since then?
We no longer do mice. Is that good? Is that good news?
It seems like a step in the right direction. There's a whole a whole generation of diabetes of research that figured out how to cure mice over and over again.
Oh, I know. Hundreds of times. Hundreds of times. So we probably haven't had a mouse in the lab for over eight years or so. So all our work is on humans with type one diabetes, and all our work is, centered on, detailed clinical trials, moving the test point deeper and deeper to see if we can have an impact on type one diabetes.
So we have humans. We don't have mice anymore.
Tell me where this like, let's do a little bit of a a a catch up. So tell me how how this all started and how it's been progressing. So where did where where
is the first thought? Back more than ten years.
From islet transplants to autoimmunity4:42
Go ahead.
So what happened was, my PhD work was with Paul Lacey isolating some of the first islets from human pancreases. Okay?
Mhmm.
So everybody thought we were gonna cure diabetes. Paul Lacey thought we were gonna cure diabetes. And Harvard Medical thought we were gonna cure diabetes and was pretty upset that the Midwest might cure diabetes with islet transplants. So I became a very low hanging fruit for recruitment to try to get a massive islet transplant program going in Boston. Mhmm.
Okay. So this was a time where there was no shortage of pancreas. Okay? It was just who knew how to isolate islets, who could get human clinical trials going, who could really cure diabetes in short order. Mhmm.
So that's how this all began. And during the four years with the setup of this program, lots of money. No problem. We kept putting islets in people with long term type one diabetes that needed a kidney transplant. And that seemed ethical to do because, as probably everybody on this podcast knows, when you get a kidney transplant, you need some pretty nasty immunosuppressive drugs.
But if you already needed those drugs because you needed the kidney, then it would just be a little booster ride to put in the islet cells and cure the blood sugars.
Mhmm.
So those were the experiments, we set out to do, and we started doing a great enthusiasm. No shortage of funding. And we were, like, the first or second group doing these. St. Louis was obviously moving pretty fast at WashU.
And the answer was so simple and so bad. And the bad the good answer was the kidneys, of course, survived just fine. Right?
Mhmm.
They were gonna survive eight to ten years. The person was on immunosuppression. But time and time and time again, when we put the islets in, the islets were rejected, the kidneys survived, and we had no impact on type one diabetes. And that was a lesson nobody wanted to hear because the whole world was moving forward for eight to ten year period saying, we're gonna cure diabetes. It's just a matter of who's got more islets.
Right? And here we were coming along with this clinical trial data that clearly showed that that was not gonna be the case. So kind of you know, I I got kinda tired of standing up in meetings of, like, here's my negative data. Okay? Is everybody listening?
You know? Negative data? And we got a problem. I mean, recurrent autoimmunity's occurring, and we don't have a fix for recurrent autoimmunity. And then mural suppression is not curing it.
So we literally quit the program after three or four years. Huge disappointment because everybody goes, well, it's just around the corner. We're gonna have stem cells. We're gonna have vats of cells. And I kept standing up and going, but that's not the problem.
The problem we need to cure is the autoimmunity. So my research focus totally changed at that point and said, I can't get islets going unless they get to the root of the human problem. So there was a good five to seven year time period where we started studying the lymphoid cells from people with established type one diabetes. So we had lots of humans coming in that had had five or ten or twenty years type one diabetes, and we wanted to understand what was different on their surface. That amount might allow us to get rid of the bad cells and not hurt the good cells.
That's the easiest way to say it.
Okay.
The TNF pathway, and finding BCG8:39
And we kept coming up with this pathway that's called the TNF pathway. And, again, there was a lot of questioning of that because a huge drug on the market for autoimmunity that you probably know about, other people know about, were anti TNF drugs that didn't necessarily work for type one diabetes, but they worked for rheumatoid arthritis. They worked for ulcerative colitis. They worked for Crohn's. And here we were obtaining this basic science data showing we could proliferate the good cells, the Tregs, and we could kill the bad cells, the cytotoxic T cells to the islets with TNF.
So, again, a little contrary to where everybody else was going, but we decided that the data in human cells was so strong. And then when we went to mice, we saw the exact identical thing, not that mice are a good test. We decided we gotta get into the human. We gotta get into the human to see if we see this again. So we started clinical trials.
And, of course, when you have a new idea, that's when funding's the hardest. And we kinda had two choices. Right? Kinda go on a commercial track and say, we need TNF. We need a drug that is TNF, but it's safe.
Or is there already a drug out there that has this effect? And sure enough, it was known way before I was probably even born. Okay? So you're talking way back.
I just had a birthday yesterday, so don't let's not talk about age right now. Okay.
Why a 125-year-old generic vaccine10:17
We won't talk about years. But it was well known that this generic vaccine called t and f or called BCG, which was used for tuberculosis, when you got vaccinated, you had an acute event, and something called cachexin was secreted. And Genentech had just cloned cachexin and realized it was TNF. They called it tumor necrosis factor. And we said, oh my god.
It's known that when you get this vaccine, you release huge amounts of TNF. And we know TNF might help in diabetes to stimulate the good cells, the Tregs, and might kill the bad cells. So in that major division of research of do we go for the cheap generic drug, or do we go for the expensive newfangled drug, we decided we're in academia. We should go with the generic drug approach. So that's how all these BCG programs got started.
It was we've got something that targets two important T cell populations we know need to be modified in people with type one diabetes, so we should bring it forward in a safe way to trials. And we went for and this is still unusual in the diabetes, field. We went for people that had existing type one diabetes.
Okay. Can you tell me that now going forward all these
years Mhmm. Mhmm.
Is it hard to look back and say, did the right thing. I did the wrong thing. We should have moved here. Like, I guess what I'm asking is do you get so focused on the thing you're doing that you stop thinking about that stuff, or is that in in your head while you're moving? Diabetes, as you know, comes with a lot of things to remember.
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Well, there's always roadblocks. Right? When you do things, there's always roadblocks. I think that it was much harder pathway doing generic drug development than if we had had the right funding up front to go over, the newfangled drug.
Mhmm.
But I still think we did the right thing because as we fast forward for the next fifteen years, BCG has only surprised us at its potential and multi limb potential as a therapeutic for type one diabetics. It's only surprised us. So picking that was a home run. Doing all the details of a generic drug, it's not so easy. There's a couple AI companies out there.
I was talking to somebody this morning. You know, they're like, you know, we're gonna cure disease. We're gonna use AI, and we're gonna find generic drugs and move forward. And I kept thinking, that's not the problem. It's not.
It's, oh, you have to remanufacture it. You know? You have to go safety in type one diabetics, not safety in the general population. So you effectively even though it's generic, quote generic, you have to redo all the steps for the FDA. So it's it's not exactly a shortcut, as you might think it might be billed as.
I have something stuck in my head for the last ten years that I I attribute to you. I attribute it to you, but I don't know if it's true that because I've had I genuinely had so many conversations. It all just sort of blends together.
Blends together. Of course.
But did you ever do you feel like you would have said to me that you feel like these cells are inflamed to the point where they can't move and do their job? Not that they're dead, but they're frozen. Is that No.
That's not me. No? These cells are all around. We can we can hunt them down and kill them. And we and for the good ones, we can hunt them down and proliferate them.
Okay.
So we don't care. There's a lot of people in the mouse field that believe the microenvironment in the in autoimmunity. And people sometimes believe this in cancer too is selective, a different, like, address that your drug has to be targeted to, but we haven't seen that in autoimmunity.
I see. How how much of of all of autoimmunity do you attribute to just inflammation and our inability to understand what inflammation's doing to us?
Yeah. Obviously, inflammation's kind of at the top of the pyramid. But when we talk about the phase two data, also the phase one data that led us into the phase two data, you're gonna see that one of the big discoveries in this work was not just immunology, but the met underlying metabolic defects. And for me, metabolic defects were what type two researchers studied. Okay.
Right? We were over in immunology. Yeah. Yeah. You guys got all these metabolic problems going in type two diabetes.
But the the truth is one of the big discoveries that came out of this was, the discovery of metabolic defects in type one diabetes that now allow us to target people after twenty, thirty years of disease. So I would probably say the pyramid's probably taller for immune effects, but there's an equal peer pyramid that's getting taller. The peak is going up in the sky on underlying metabolic defects that can be treated in type one diabetes and lead to really good clinical outcomes.
Can can you kinda colloquially tell me what some of those defects are?
Yeah. So I always like telling the funny stories because usually science is somebody showing a gel and go, oh, look at this band. Bingo. You know? So I think
Yeah. I'm gonna need something everybody can understand when you explain to me.
Yeah. Yeah.
It just
falls on you. Right? And you just found that band, and that band's really important. You know, it's just bingo. But most science is not bingo, and science kinda likes to torture you.
Phase 1, and the eureka at year three18:24
So we did the phase one trial. It was published in 2012. And it was a small trial, and it was to give multidose BCG, a strain we knew that was really potent to people with long term type one diabetes. Okay? And we knew about strain differences in BCG, and we also started out with long term diabetics because nobody else wanted to study those people.
Right? Everybody wanted to run for the not yet diabetic child. So we go, well, who really needs something? It's people that have diabetes. Right?
So maybe we should start there. And, of course, we were told by everybody this was totally crazy. So we did a short trial with David Nathan, and it was twenty weeks long. And it was obviously safety. Can you give multidose BCG in people with long term diabetes?
But it was also a lot of biomarkers to see if we could really track what was going on with BCG. So the biomarkers were similar to what we had seen in the mice. Do we see dead autoreactive cells in the blood? Do we see the induction of Tregs? Do we see something, even something tiny happening in the pancreas, which was pretty much dead.
Okay? So we thought we could monitor all those markers. And, of course, we were looking for hemoglobin a one c, which in retrospect is a little bit, probably not well thought out, but we looked for hemoglobin a one c.
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So we got done with that twenty week trial, and mechanistically, the data nailed it. We could see the brief induction of Tregs. Okay? That was good. The compound obviously did that.
We could see the beautiful death of autoreactive insulin autoreactive t cells in the periphery. Didn't really see much in the pancreas. Okay? The pancreas pretty much dead to begin, was pretty much dead at the end. So we might have stopped there.
Okay. We might have stopped there. But there was a guy in Italy doing BCG in multiple sclerosis for the same reasons we were. You need to induce the Tregs. You need to kill the cytotoxic T cells.
And can you see something happening in the brain? But his study, his name is doctor Rastore, was unique because he followed his patients five years. And when he followed his patients five years, knowing that neurological disease is slow to develop and might be slow to reverse, he started seeing the resolution of multiple sclerosis by scans in the brain. And it made us pause and say, oh my god. We had these early biomarkers that moved.
So maybe the mistake we're making or the improvement we could add was to do still phase one trials, but follow people long term. Go out to five years. Go out to eight years and see what happens. And that was the eureka moment. When we followed people out to eight years, we saw in around year three to four these dramatic drops in hemoglobin a one c.
A1c falls with a dead pancreas22:56
Okay? We're talking about people with twenty, thirty years of disease and during a year, year and a half, two year period, all of sudden, hemoglobin a one c's went down 20%.
Okay.
K? So anybody who's out there that's a diabetic goes, that doesn't happen randomly. Okay? Like, Nothing brings your hemoglobin. It lets you down that much.
So, of course, we recruited all these people in, and we said, oh, we gotta do IVGTTs. Right? That's what you do in adults. Right? You don't give them a mixed milk tolerance test.
You give them glucagon. And we're gonna see that their pancreas regenerated. So we brought them all in. We sent all the serum off for c peptide, which means is there insulin from the pancreas. And when they we got the data back, it was flat as a pancake.
Okay?
Okay.
So they had no c peptide to begin with. They had no c peptide at year five, six, seven, eight, but their hemoglobin a one c's had dramatically fallen. Now try to publish a paper like that. Okay? Can you You corrected blood sugar.
Okay? Yeah. Can you take a detour for half a second and explain explain to people the back end of all of this? And, like, when you say, like, try to publish a paper like that, what is what don't we understand about the the profession
Publication process.
Research and and that help?
Yeah. So, you know, you kinda have to stick to the groove, and the endocrine groove would be you can't lower your hemoglobin a one c that dramatically unless you have a live pancreas, and you're making insulin. And these people were not taking more insulin. If anything, we thought the insulin dose was going down. So how is that possible?
Okay? So we paused the publication of the paper, and we went back to do the basic science because we had all this serum saved for eight years. And, effectively, we were looking for a cause, a new reason for why BCG could lower blood sugars. Right? Mhmm.
It wasn't the pancreas. It wasn't insulin. So something was lowering these blood sugars. And it happened in all the the the BCG treated group, which was small, did not happen in the placebo group, and did not happen in the reference group. So when we started doing something called metabolomics, it's like looking at all the metabolites in your blood.
The Warburg effect in type 125:29
We came up with a really strong signal that after BCG and the years following BCG, an important metabolite changed. And it won't mean much to most scientists. It'll probably not mean much to most laypeople, but we saw this big increase in purine metabolism. And you may go, well, what do purines have to do? Well, we had to look it up too.
Okay. That's true. I don't even like it. Why are purines going up? Okay?
And it turns out purines are a byproduct of accelerated glycolysis. So we all of a sudden started realizing that BCG within the lymphoid system, that means the lymphocytes, the white blood cells, the monocytes, the t cells, and b cells, was accelerating glycolysis. And furthermore, we began to discover that people with type one diabetes at baseline had misbehaving white blood cells that were eating fats and not eating sugar.
Okay.
And that's called the Warburg effect, or it's called aerobic glycolysis. And we all a sudden realized that type one this is where the story comes around. Type one diabetes had a major metabolic defect that had not been described before.
Mhmm.
And that what BCG was doing was, yeah, it was doing its good thing on a pretty much dead pancreas. But what it really was doing was changing the metabolism of the lymphoid system to restore it to eat sugar and regulate sugar. Because how glucose is taken up is not by osmosis or just diffusion. It's a regulated receptor transport. And so those receptors are well studied by many people.
And when the blood sugar is high, that transporter is pumping in the sugar. And when the sugar lowers, that white blood cell is not pumping in the sugar. So this was the beginning of a discovery that we had a drug that, you know, might change something in the pancreas, but we were studying people that had no pancreas left, but could regulate blood sugars to a level of degree of control that had not been seen before. And these were people with long term type one diabetes. Okay?
Okay.
So that was obviously startling to start talking in type one diabetes field about aerobic glycolysis and lymphoid defects and metabolism. But the size of the errors were so substantial. We knew we were on a hot trail, and we knew we needed to do lots of basic science. So we published maybe ten, twelve basic science papers on these newly discovered metabolic defects and how BCG was changing glucose transport in the lymphoid system to control blood sugars in the periphery. So that's a a big mind shift because people with type one diabetes have probably given up a vision or hope that if you have the disease long term, it's be happy with insulin, be happy, with a glucose monitor, be happy with an insulin pump, and that's gonna be your life.
Right? You're gonna have better insulin. You're gonna have better pumps. You're gonna have better meters. But nobody was doing immune intervention trials with success, let alone even in the prediabetic success to this magnitude.
The phase 2 pivotal trial29:15
So then that, of course, pushed us on to raise the money to do the phase two pivotal trials.
Mhmm. What what's this next phase hoping to to show?
Yeah. So this next trial and we released the beginning of the data in at the ADA, was to now do a bigger trial, do all the bells and whistles. Like, you know, download all the CGM data. Okay? Mhmm.
Have people come every six months. Have them followed long term, you know, every six months for five to eight years. Have them come in every, year and do a glucagon stimulator test, what's happening in their pancreas, And really run a very deeply scientific and rigorous trial to make sure this was reproducible.
Yeah. Do you think that like, if if we could all stay alive long enough and Yeah. And you can keep working. Right? Do you think that your approach leads to a stand alone cure?
Do you think it, I don't know, becomes more of, a a disease modifying treatment? Or
Yeah. Or do you see that how I say it.
Yeah.
Right now at year eight, okay, these are people let me define the population. Adults, 30, 40, 50 years old. Right? Mhmm. And they this group all got diabetes when they were kids.
Two years old, five years old, eight years old. K. Okay? Young juvenile onset, what you and I think of when somebody goes, my child got diabetes. You picture an eight year old.
You picture a 12 year old.
Yeah. My daughter was two. So yeah.
Yeah. Yeah. So just of interest, if you have a child that got a two, you have very severe aerobic glycolysis defects. So we now know it's not your chronical age that determines the magnitude of the correction, it's your age of onset. So these defects are very large in people who get it when they're very tiny.
But yet even as adults, when their pancreas is all gone, BCG works beautifully and faster, the younger the age of onset. So it's a you know, we've been you know, when I see new onset families, they go, oh, I gotta get in tomorrow. I gotta get in today. I gotta, you know, I gotta fly from Kansas. You know, I've gotta I gotta be there.
And they're in this panic that, you know, there's a few islets to preserve, and we need to get in immediately. But this is this primary effect on blood sugar has nothing to do with preserving the pancreas.
But there's a lot to be learned from the idea of how soon in your life you're diagnosed.
Yeah. So that's why we're doing the pediatric trials now because they have two hopes, not one. First of all, they're younger, so there's advantages. I always think younger. Right?
And then the second advantage is that most of them, not all of them, still have some pancreas reserve. Right? So now in these pediatric trials, we're gonna see the impact of BCG on Treg induction and cytotoxic T cells in these kids.
Age of onset, and the pediatric trial32:34
Oh, you ever look at the other pathways that are being looked at and think, oh gosh. That's an that has a lot of merit. I'm excited about that. Or do you ever look and think, jeez. What a that's not gonna I'm not asking you to out anybody, but I'm wondering what you think when you look around the, you know, the space of of diabetes, you know, cure chasing.
Yeah. I think it's not just specific to diabetes. I think in autoimmune diseases as a general theme, and this has been going on for twenty years, it's been the concept of immunosuppression. Right?
Mhmm.
That the only way we can do this is more and more immunosuppression earlier and earlier. And for some diseases, like rheumatoid arthritis, that seems to work. But there's other diseases where it doesn't work as well. And the magnitude of the immunosuppression or the drugs are pretty toxic on themselves. So diabetes sets a really high standard that typically most trials are in kids, and you you better have meticulous safety.
Right?
Yeah.
Meticulous safety. So I I hope everybody can pursue their dream. Okay?
Mhmm.
Because the proof is in the pudding. The proof is in the clinical trial. So if you think that's gonna do it, go for it.
Go for it.
And we'll see at the end of the trial. Right?
Is it encouraging to you that they're finding other immune suppressants that don't seem to be as harsh?
Yeah. It's one way. You know, a lot of people in all autoimmunity are going for immunosuppression. You know, ironically, we're going at the 180 degree opposite way for immunostimulation. Yeah.
So very different approach.
If you if you popped out your head out of the clouds tomorrow and you were like, oh my god. We figured it out. Your thing has impact on more than just type one diabetes. Right?
Yes. Yes.
Yeah. Yeah. Because I mean, I hope this doesn't feel like a left turn to somebody. Maybe you'll disagree. I'm not sure.
But in the last handful of years, you know, the the number of people that I've interviewed who are having resolution of other problems after going, like, on a GLP medication are real are really interesting. Like, great to see. And and just today and there was another study published about psoriasis. Mhmm. And I'll tell you, I could they could have saved a bunch of money.
They could have just asked me three years ago. Would have told them. That I haven't had a I've I've had psoriasis in cold months probably most of my adult life, and I have not had it one time since I've been using a GLP medication.
Oh, that's interesting.
Yeah.
That's interesting. Right?
Not not ever one time. I was anemic before that. I don't think I was processing my food correctly and really pulling the nutrients out of it. Haven't been anemic since then. I'm watch I mean, there's those stories of the ladies getting pregnant, like, very very even before weight loss.
You you know what I mean? Yeah. Endometriosis, PCOS, like, implications there and there. So is that all is that all just inflammation being reduced?
It could be. Yeah. It could be.
And what do you have any idea why GOP is doing that, or does anybody know, or is that just one of those things that we go like, oh, it happens. But
Yeah. I don't GLP can change protein processing, and the reason we look at some of that data is because BCG changes protein processing as well. Mhmm. So I think there's probably more levels to understanding all its effects than just your stomach shrinks and your head doesn't think you need to eat.
Right? I think I gotta be honest. In my life, that might be the least of value it's had for me.
Yeah.
Yeah. Yeah. But I just didn't like, it makes sense to me because if you're thinking about inflammation so much Mhmm. I mean, I'm that's where I'm at. I am certainly not a researcher.
I didn't go to grad school or college or anything else. I'm just a person talking to people. But my goodness. If I didn't have somebody tell me six months ago that their child who was experiencing pretty significant mental health issues Mhmm. Even saw a reduction in them on a GLP medication.
Mhmm.
And and I don't know how crazy this sounds to people when I say this out loud. I've never said it to you because the last time I talked to you was a decade ago. Mhmm. But in that last decade, I have talked to more people who will tell me that they have a bipolar relative. I and I find myself thinking that if I didn't make a podcast about type one diabetes specifically, there's no way that so many people would talk about anxiety.
There's no way that so many people would talk about bipolar disorder.
No. Because you kinda don't put it in the patient profile. Yeah. But I'm telling you, like Eligibility.
Got it's got to have something to do with inflammation overall. And and I don't know to me, I I wish everybody would just pivot and look at that, to be
perfectly honest. I mean, so many things are driven by inflammation. Right. Right?
Yeah.
So many things. And, you know, CNS disease and inflammation is not a good thing. Right? I mean, Alzheimer's is also in that category.
I it just seems to me like that's the that's the pathway. So do you see like, would your thing be a great, like, additive to another idea, or do you actually believe that one day you'll get to the point where you're like, oh, we just use the BCG, and you don't have diabetes anymore?
41% with a normal A1c at year eight38:08
Well, so what is the endpoint? So people still were at year eight in this big trial, and the first unblinding was at year five. So these people after year five are no longer unblinded. But their hemoglobin A1c's are still going down. So at year eight, forty one percent of them have a normal hemoglobin a one c.
So you go into your endocrinologist, so you get your sheet back, and it doesn't show diabetes.
But they're using insulin.
They're using insulin. Insulin. Okay. Okay. They're using insulin.
So what does that mean? Is it cutting the cutting out the highs? Cutting out spikes?
So you all of a sudden, the data shows that for the first time, you're spending most of your time with true normal glycemia. Your your little curves up and down during the day are confined to 70 to 99.
Mhmm. Oh.
So you all of a sudden have tight blood sugar control, and you have more no more hypoglycemia.
How many people do you have that are showing that?
It's about forty one percent. So, like, twenty. 20.
20 people. Yeah. Because you your your study is I mean, is your study considered small by standards, or is it no.
It's huge.
It's huge.
I mean, I I think we've created 660 people with BCG with type one diabetes, so we're bigger than any, c d three trial to date.
How families find the trial39:33
Oh, Denise, take a take a pause here for a second. For all the people who yell at me online that I don't do enough to support cure research. Can you tell them where you get all the people for your trial mostly?
Oh, yeah. So this is, like, an interesting story. So we didn't have like, I'll talk about the peds trial. We're just fully enrolled. Okay?
Mhmm. And it's 250 kids. Two types of kids just got diabetes in the last, three months to a year. And then kids that got it, and they've had greater than two years of diabetes, but they're still kids. Okay.
So we go, okay. We don't really do peds to that volume here. So we started advertising online. And you Scott, you'll be very excited. I can't tell you how many families come in.
Always ask him, oh, how'd you find us? Because we don't have a $4,000,000 budget for this advertising.
Sorry. If you did, I would be retired by now. But go ahead.
Exactly. We don't have that budget. And they go, oh, I watched Juice Box, and they talked about your data. I mean, we're talking about people in Utah, Montana, Kansas City.
Well, not only that. You're talking about people who listen to a nine year old podcast and still found you.
And they love it.
I would like all of the advertisers to listen to what Denise just said. It's true. Heard you're not paying
enough. So popular.
I heard you're not paying enough, and you're gonna get paid back for a decade to come. I don't want any complaints when I push the price up. Denise, no nobody complains when I put the price up on the ads next time. Yeah. That's what I wanna hear.
No. I I so what good for you, Scott.
Wow. So I go, oh, how'd you get connected to that? Then they can't always remember. But they go, oh, I listen to these podcasts. I've commuted to work.
Or Mhmm. You know, it's in the evening, and I got the kids at bed. I turn on the podcast. I go, oh, this is really interesting. How would I have been exposed to this data before?
It just So these are Yeah. Educated people, educated parents that are seeking data.
Mhmm. Educated. That's another way of saying can afford your stuff. Listen to what I'm listen to what's being said. Anyway Sorry.
No. I know. No. I appreciate you.
Podcasts are pretty cheap Yeah. To listen to.
Yeah. Denise says before we started recording, goes, so many people heard about us through your podcast. I was like, don't waste it before you're being recorded.
Yeah. It's true. It's true. I even have I have my private notes on everybody, and you are featured in quite a few. Found us on Juice Box.
There you go.
Oh, boy. Oh, I'm so happy people are, like, out there trying to do better for themselves. I mean, I find the whole thing fascinating, obviously. Like, you know, I just had Wachowski on from Chicago. Yeah.
Super interesting. And I'm gonna and I'm gonna ask you the same question I asked him towards the end of the conversation I had with him, which is you're you're not, you're no spring chicken, Denise. And and and what do you do to make sure that this has legs beyond you? How do you set it up? Do you know what I mean?
We
you know, I got that question. I won't pick which pharma company was talking to me. And they go, what's your next step? What's your next step? And I said, well, you know, we got 250 families and kids enrolled in pediatric trials.
He kept asking it, like, eight times. And finally, I got to the end of the presentation, and he asked it again. I go he goes, what's your next step? And I said, drug approval.
Yeah. Let's go.
And he his jaw kinda dropped down because he thought that most academics are to get the next paper. Mhmm. And, of course, you know, that makes people around here happy. But what would really make me happy is getting something safe, affordable, and dramatic Yeah. That hasn't been out there before for everybody to use and benefit from.
This drug this drug's a generic. Right?
Well, it's a generic in that it's been used for a hundred and twenty five years.
Yeah.
I mean, last year, a hundred and twenty million newborns got at birth. So safety is not an issue. Safety has got it nailed. But you can't go any place and buy it right now. Mhmm.
So it's not like you can, we get these calls. It's usually a physician that wants to have a private call with me.
Do you do you ever track this?
Where they're going.
Yeah. Those children you just mentioned that get it at birth, what do they get it for?
Oh, tuberculosis. It was developed for tuberculosis. And then about twenty five years ago, it's not exactly the exact date, people started seeing these off target benefits of this vaccine. And the first category off target benefits they started seeing was that if you got the vaccine, you were protected from all infectious diseases.
Off-target benefits, and right-to-try44:25
That's my question. It's like, they tracking those kids? Are they are they
Oh, yes.
Flipping around the planet just all good? What's going on?
Yeah. Yeah. So I won't quote everybody's data that works on the infectious disease thing, but it makes your immune system so much better that when you get exposed to the flu, you don't get the flu. So we track this in our diabetics because you know if you have diabetes, you get more infections. Right?
Yeah.
All the time. So our diabetics become the family member that don't get sick, that doesn't get sick. Do you take it? Do I take it? I don't have access to it.
Yeah. You can't get some? I see what you're saying. Okay. Yeah.
I mean, here's a different
take it immediately.
That's a different question. Would you take it if you could?
Oh, absolutely. Yeah. How about that? And the entire family.
You'd be you'd be running running around at
Christmas dinner. Dog, not the cat.
At least at Christmas dinner is like, here's look what I got you for Christmas. Because I I'll tell you right now. I've been using, GLP for three years. Yeah. And, I turned 55 yesterday.
Okay.
And I stood around with some people this weekend. Some of them were seven, eight years younger than me. Yeah. And I thought I looked I I'm the youngest looking person here. I feel terrific.
They were talking about their health. They're achy. They're this and that. And I said, I have never felt better in my entire life. And and I and and people say, well, what are you're gonna have to take it forever.
Said, take it forever. I think you should spray it out of airplanes. What do you think of that? Yeah. Yeah.
You know? And it's interesting to hear you say that. You would take it if you could. What do you Oh. Do you have autoimmune in your life?
I do. But that's not why I study the disease. I think it just goes back to the proverb, if you study it long enough, you get it.
I think that's not a proverb, that's but hilarious. Well
I remember my thesis adviser got type two diabetes, and he was like, damn it. You study it long enough, you get the damn stuff.
I'm gonna start studying tall people, Denise. That's my
Yeah. Yeah. Exactly.
But but but, seriously, what do you think like, just for general population people, if you could just give it to somebody, you you think it would just make their immune system a little more vigorous?
So much better. Oh, yeah. Because the off target effects now range from platform infectious disease protection to, like, multiple sclerosis to prevention of allergies to our new data on Alzheimer's.
Can you
So talk about health benefits. It's it's quite amazing.
Could you split your research in two and send somebody else in that direction to try to find a faster path for it that way?
It's interesting. Some fields move faster than diabetes, and some fields move slower than diabetes. Mhmm. So I think the infectious disease people have had a hard time getting the concept launched in Europe. Not mostly states are in Europe and that's associated with Africa and African countries because you're doing randomized clinical trials on poor people, so you have to be very careful that the governments believe you're offering them benefit.
Right?
Okay.
So those trials take a lot of effort to get the
Of course.
Yeah. Yeah.
Yeah.
And I would say the trials that are gonna move the fastest are in Alzheimer's with BCG. There is such an outpouring of support because there's no alternative for Alzheimer's. The Alzheimer's community, after we started announcing we've now done three trials in Alzheimer's, are so welcoming. So, oh my gosh, we've gotta do this. Let's figure out how to get a consortium together.
I've never seen a group of researchers so cohesive at moving the field at a faster pace.
And it's easier, you're telling me, because those people are already not being helped by anybody. So so they're well they're teaching. Well Yeah. And they're well-being of it.
It's not like somebody in a neurology clinic has infusions once a week. Okay? Yeah. And you're headed for a nursing home. Right?
You might as well what there's nothing to lose, you're telling me?
There's nothing to lose. Yeah. And when you're in the diabetes field, you have a standard of care.
Right. There is something. There yeah. It's not well, yeah. No kidding.
Mhmm. Yeah. Alright. Well, so what do I gotta do? I gotta take my daughter to a country where they have TB, and they'll
just But is she registered? Because everybody should get registered because that's how we have outreach. We have diabetes trial, not plural, just diabetes trial at partners.org. And anybody who's interested we're not like Victoria's Secret that sends out a news announcement.
You're not gonna get a postcard from Denise. Yeah.
Buy our product.
The 15% off coupon in there.
Yeah. Usually, once a year, we give an update. But when we open up clinical trial slots, if you're interested, you'll get an email. Like, you know, this trial's gonna get launched or blank. And so it's a great way to
Tell me
the pass it.
Tell me the link again.
Yeah. It's diabetes trial Mhmm. At partners dot org.
How to register, and what's next49:45
Okay. What would you say if I told you that this weekend a person came up to me and said, my child was diagnosed, and I've been looking, you know, feverishly for, you know, a way to reverse this. You know? I found a trial that I thought was valuable, and we did it, But I had to pay $40,000 for it. Is that a like, is that a thing that happens?
It struck me strangely when they said it.
You know, it's kinda interesting. Was this in The US or in Mexico?
No. I was in Florida when they said it.
Well, it's called expanded access. Okay? So there's two kinds of trials that legally can do that. One kind of trial is a trial where you go into your doctor and you go, I have breast cancer, but I want you to prescribe me birth control pills. You go, well, that's insane.
And there's a law called right to try that you are obliged to give that person that medicine without any liability back to you. It's called right to try. But there are also ways to do expanded access trials where somebody calls you. It's a lot of work. But somebody calls you and goes, I want that drug, and it's in trial design.
And I want you to figure out the price to do the therapy, and I'll pay you cash. But you have to get that set up through the FDA, and they literally do an audit of your financial records to allow the pricing to be supported.
Okay.
But then there's also nuts out there, so I don't know what category this is.
I swear I don't know either.
And I'll listen. I'll I don't know uncommon.
I won't denigrate it, I'll tell you after we stop recording, I'll tell you what they did. And Okay. Because I'm interested to see what you think. Hey, there.
People go to Mexico all the time to do this kind of stuff.
The right to try thing, does that work in my regular life? Can I can I go to my doctor and say I mean, here's an example? I've somebody just came to me and asked me this. Right? Young girl in her twenties gets GLP from a a family member.
Mhmm.
Besides losing some weight, alleviates all of their kind of IBS kind of Crohn's problems.
Mhmm.
Goes to the gastro and says, hey. You know, look. I did this. I did it, you know, I did it off label. I did it without you, but here's what's happening.
And that and they say, well, I can't prescribe that to you because it's not gonna
be paid for. Invoke right to try. Now your insurance is not gonna cover it.
Right.
Okay? Your insurance is not gonna cover it, but you should read about it online. Yeah.
Right to try. Okay. I'm gonna Right
to try.
I'm gonna check it
has to be an already approved drug. The c g is not approved. Okay.
Yeah. Yeah. No. Okay. Oh, that's super interesting.
I appreciate.
No. It's just nice talking to Yeah. Is there anything that you that I haven't asked you about or that you have No.
We're just so grateful to the public that has so deeply supported us and, you know, really going on a different vision of what we could do for people. I mean, when we tell people the trial's five years long and then we get say, well, you wanna stay on for another five years, and everybody stays on. We're grateful. Okay?
And how often do they take the the the med? Is it once? Is it multiple
times? Yeah. We for the adult trial, we did six vaccines, and these people are stable going out to eight to ten years.
Give me give me numbers about stable. What does that mean?
Stable meaning a normal hemoglobin a one c.
Okay. Jeez. And then
But if you started like, you know, I'll give you an example. Let's say you come in, you got diabetes when you were two, and, you know, you're pretty poorly controlled. Right? Because it's really severe form of the diabetes. And you have you get enrolled and, you know, you're 30, 40, and your hemoglobin a one c is nine or 10.
Okay? There's a lot of people out there still
in there. Yeah. Yeah.
Okay? Yeah. You'll be down at seven, and you look like a hero. Right? Yeah.
You might not get all the way down to a 5.8, but you have had a dramatic drop in your hemoglobin a one c in life.
Yeah. It changed the outcome of your life too.
Yeah. Yeah.
Yeah. No kidding. Are there people for whom much it just does not work for?
We haven't identified many people. The other part of the study that we won't have time to go in today is we also did exploratory limb in LADA, and LADA are those people you've run into before that go, oh, I'm 50 years old. I got type one diabetes. Mhmm. You go, what are you talking about?
And they go, well, you know, they put me on metformin. It didn't work. And now I'm on insulin, and now they did autoantibodies. I have autoantibodies. I have type one diabetes.
Yeah.
Yeah. So we also did a study in those people as well, which is pretty interesting.
Interesting. You I don't feel like you answered my one question, though.
So okay. Hit it again, Scott. Yeah.
When is there a are there people in your lab that you're training to take this forward?
They've Oh, yes.
If you get hit by a car, for example.
Like, what happens? Yes. Yeah. Yeah. Yes.
Absolutely. And the idea is not to have them in my lab. The idea is to see who will distribute it at the best price. Yeah. You're just Walmart, Costco.
You're just trying to get it out. You you think it you think it's ready to go. Right? The idea?
Well, we'll see what I think and what the FDA thinks.
Yeah. That's are you gonna find out when are you gonna find out what the FDA thinks?
Oh, I mean, we're communicating all the time. But when you have something that I mean, the advantage of this drug is safety. Safety. Safety. Right?
Tell me. So if they're if they're not looking at you and going, yeah, Denise, let's do it. Right? The FDA. What what is holding
safe. What's holding it back? Well, you know, there's always another trial to do. So somebody, could say, well, you gotta get the peds done. Well, these trials go five years, so you can really push it out and not have it available.
So I think it's always good to have regulated distribution instead of a free for all in, you know, the clinic start in Mexico and, yeah, Puerto Rico and Cuba.
Having said that, you'd you'd take a mouthful of it if it if they sent it to you.
Yeah. Yeah. Yeah.
Okay. Alright. Well, that's what I wanna know.
I don't wanna get Alzheimer's either.
I gotta tell you. I feel like I'm gonna live forever with this GLP. I know that's not the case, but I it's hard not to feel that
do low dose? Do you do low dose?
I'm taking twelve point five of Zepbound.
Okay. Yeah. Okay.
I'm down 70 pounds.
Wow.
Yeah. No. It's it's it's astonishing how just and I know Do because
think Zepbound's better than the other ones?
I used Ozempic for a while. I plateaued. I did everything I could think of to break the plateau. This is a Mhmm. A couple years ago now.
And my physician said, well, let's just move you to Zepbound because of the GIP component. I I'm very excited for this the triple agonist. I I can't wait to see what the what is it? Ritutatide or something.
Yeah. Yeah. I never know the names. Yeah.
Yeah. The the names are crazy. I think they're they're starting to talk about instead of bone density loss, they're seeing increase they're saying that people are hungry on it, but still losing weight.
Woah. That's a weird one.
Yeah. I'm I'm I I have to be honest with you. Like, I'm it it it's fundamentally changed my life. I I the way I joke about it is if I grew a horn out of my head that said Eli Lilly on it, I'd put some lights on it so you could say it. I'd be so proud of it.
So it just has really made massive improvements for me. Somebody asked me what are the side effects you're having on. I like, well, I'm awesome now. And I I don't I don't I really don't know another way to say it. But it may I'll tell you to your point.
It really makes you think now about, like, I might live longer than I was I started thinking about it. I don't know if we're ready for retirement the way we thought we were. I don't know. Like, I
I Well, everybody should work longer if they can.
Yeah. I wanna keep going. But I'm saying, like, even just having money at the end of your life, like, I thought the end of my life was gonna come sooner. So Yeah. I'm in.
I I I yeah. I I I swear to you, I think there's a ton of good reasons for a lot of people to be using it, and the least of which might be their weight.
Weight loss.
Yeah. So we'll see. Maybe I'll I might be right. I might be wrong. Time will tell.
Just like for you, Denise. Time will tell.
Yeah. Yeah. More studies.
I appreciate you doing this. I appreciate you taking the time.
Yeah. Good to talk to you and all the updates.
Oh, absolutely. Thank you for doing this. Hold on one second for me. Am gonna share that Okay. Thing with you.
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#1936 Naming This
Naming This
Scott and Erika Forsyth plan their next series out loud — the reasons people avoid their own diabetes care, and what happens when you give each one a name.
Jump to a moment
- This is the planning meeting, published. Scott and Erika each came with an idea for their next series and neither knew the other’s. What listeners get is the curtain pulled back — two people working out what to make next, in real time, including the parts where they check whether they’ve already covered something.
- The series has a name and a premise: naming this. After reading through research on medical information avoidance, Scott sketched roughly eleven short episodes, each putting a name to one reason people don’t do the thing they intend to do — avoidance and inattention, fatalism, feeling too far behind to start, stigma, information overload, dreading an appointment, disagreeing with a doctor, “I’m fine,” and burnout. Erika connects it to Dan Siegel’s name it to tame it.
- Nobody is willfully negligent. Scott’s position after twelve years of interviews: he has never met someone who didn’t want to be healthy, so avoidance is better understood as a nervous system protecting itself than as a choice — which is why he rejects the label noncompliant. Erika adds what tends to sit underneath: grief, fear, an identity that hasn’t integrated the diagnosis, or gaps in education and support.
- Stigma gets a genuinely different reading. Scott argues that if you don’t care what other people think, stigma has nothing to grip — illustrated with a story about a woman who wouldn’t buy a car she liked because of what her friends might say. Erika reframes it precisely: the public stigma is external and real, and self-stigma is the part where you choose whether to internalize it. They agree to make it a full conversation.
- Erika’s contribution: caregiver distress in the age of constant data. She wants to examine what it does to a caregiver — and to the relationship — to have someone’s glucose visible twenty-four hours a day. Scott offers a real example about being able to read his daughter’s day off her CGM and wondering whether he’d find that comforting if he were her. Erika’s framing question for the future episode: when is the checking serving you, and when has it stopped?
- Erika Forsyth, LMFT — Erika's practice — now licensed in Oregon, California, Montana, Utah, Vermont, and Florida.
- Mental wellness series — The full Scott and Erika catalog, including episode 1196 on ambivalence and motivation referenced here.
- Juicebox FAQ search tool — The searchable index Scott uses on-air to check what they've already covered — filter by mental wellness and search a term.
- Touched By Type 1 — Orlando — The free September 26 event Scott and Erika are both attending.
Every word of the conversation
Cold open & sponsors0:00
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That's visit.twist.com/juicebox, and twist has two i's. Understand? Twiist.com. Visit .twist.com/juicebox. I'm just gonna hit record because now I'm seeing you getting I'm seeing you get sad.
Two ideas, and nobody knows the other’s2:05
Hold on.
I'm getting nervous. Yes.
Is that what's happening? You're nervous?
Yes. I'm getting nervous. Alright.
Yes. So we've both come to this short recording today with an idea for what we can do next together, and neither of us know what the other's gonna say. And then I said you go first, and you had a small stroke off microphone. So I'll go first because I because I want you to be comfortable. Okay?
Thank you.
You're very welcome, everyone. Erica's back as you can tell. Let me see where I put my idea for this. Ah, here it is right here. I think I'm gonna be calling the, the series naming this or something like that.
Where “naming this” came from2:44
Mhmm.
So here's where it comes from. I have been picking around recently in research that explains why people specifically with type one diabetes may or may not take the care of themselves that that their doctors or that they would even hope that they would. So there's research that tells you what gets in the way of people making those decisions. Right? And the way I'm kind of looking at it here is oh my gosh.
Should I just tell you? So yeah. Yeah. So I I basically have it broken down into it looks like maybe 11 episodes, but they're gonna be shorter. I have avoidance and inattention, and I have fatalism, the idea of, like, this is not gonna matter no matter what I do anyway.
I'm too far behind to start, so kind of low self efficacy. Everybody knows, and it's a stigma thing. Like, they they don't wanna you don't wanna pop your head up and be stigmatized. I have too much information, so I froze. So a little information overload.
A trust break kind of a thing, and this breaks into a couple of different episodes. So the idea of, like, first of all, they they got it wrong, and I paid the price is kind of the like, I got bad information, and now I'm the one who's suffering. I have walking into an appointment that you're dreading, and kind of the third part of this one part idea is disagreeing with your doctor and how to do that without kind of blowing up your whole thing. So kind of like a three portion around the one idea of I'm not getting good advice. Mhmm.
The adaptive kind of I'm fine. This is fine. We're all fine. Don't worry about it thing. Diabetes stress, so burnout or depression.
And excuse me. And then I thought we could do kind of, like, a closing kind of, like, a structural closing about why all this isn't your fault and, you know, kind of button it up to there. That would be between you and I. And then on the other side of it, not for each of those things, but I'm thinking about bringing Jenny in on the I'm too far behind part, and there's too much information, so I over I froze. They got it wrong.
I paid for it. Walking to an appointment that you're dreading, disagreeing with your doctor, the I'm fine, so it's fine thing, and the burnout. So I would do probably 10 or 11 pieces with you, do six or seven with Jenny, look at how they can kinda companion for each other. And then that was my idea.
I so I like it. So the overarching title or theme is what what did you say? Was the
I I guess you have to name the things that are happening to you. So the so where this started was a conversation I was having with myself. And sometimes when I say that, you should infer that I was having it with an AI bot at the same time in in my car while I was driving. The I but I had just looked at a lot of research around like, there's, like, there's, like, nearly a 100 studies about, like, predictors of medical information avoidance, basically. And I am I am almost done being baffled by it at this point.
Like, you see it all the time. You know, I I take this pill because I don't feel good. Three months from now, I feel better. First thing I do is stop taking the pill. That it happens to people at every level of desire, intelligence.
It's just it's just a human thing. It got me thinking about that, and then I wondered if there was research around it. So I dug through the research a little bit to find it, and then I basically put together what are some common reasons why these things happen that that are, I don't know, that are found in almost all the research, and that's that's shorter list that I came up with was there. Anyway so then I figured, like, when you and I talk about stuff like psychosocial stuff like this, we're always saying if you if you name it, then that's a way to move forward. So that's why I was thinking naming it.
How'd I do?
I I well, I like it. I was just thinking of, doctor Dan Siegel, who we've talked about before. He kind of became known for the saying name it to tame it. Mhmm. And, also, Brene Brown is big on, you know, when you're noticing something, just naming it is part of that process of moving forward, having that awareness of what's going on and what you're feeling.
So I I love even the title of, you know
Thank you.
Naming it naming this
So what do you think? Can we do it? You busy? You got something going on?
I think it's no. I think it's great. And I'm as you were listing some of the topics, I was thinking about I know I had one idea, but they're really kind of two different ones actually that might fit in to this series.
Okay.
Do you wanna process some more of your ideas?
Yeah. Help me help me think it through a little bit because I I mean, I have a proposal put together to send you, but I still, at the same time, I I think talking about it helps me understand it because I the way the proposal came is from me talking about it. It's really the only way I'm able to do this stuff. So, yeah, let's go through
Avoidance isn’t a decision8:27
it. So the first avoidance versus inattention. Too far and then the next one was too far behind to start the stigma. I mean, I almost as we're naming these things, thinking about, you know, what are these are barriers Mhmm. To having, you know, a quality of life, not necessarily just in from the the number perspective, but from your psychosocial emotional perspective.
Well, around avoidance, I guess the way it occurs to me is that it could look like a decision from the outside, but then I think it's probably more of, a, I don't know, like, a nervous system protection thing or just, like, I just need to be out of this so that I don't have to deal with it. Because that to me, it's kind of an extension of you know, for all the people I've talked to over a dozen years, I I always say I've never met anybody who is willfully negligent. Like, I've never met somebody who's just saying, I don't wanna be healthy. And then, you know, when when you get, like, tagged by your doctor as, noncompliant. Mhmm.
I mean, that that could happen. That could be written on your folder, you don't even know it. Mhmm. And I just don't think people are noncompliant. Like, I don't think people show up at a doctor's office thinking, I'm gonna ignore what's happening here.
I don't care what my health outcomes are. Screw this. Screw them. Like, I think there's other reasons why it happens. And so when you're avoiding digging into this, I don't I just don't think it's a purposeful decision.
So, like, to me, that's kind of the perspective of that conversation from my perspective. But I don't know what you'll bring to it when the day comes where we record it and I say that.
Yes. Oh, I'm thinking, yeah, avoidance is is what we see. Right? The the behavior, but what is driving that can be so many factors that we can get into. But I'll name a few.
Right? Grief.
Mhmm.
You know, you're not the the idea and the identity around diabetes hasn't been fully integrated for very for variety of reasons. Education, awareness, the fear
Yeah.
Of, you know, uncertainty around pre bolus. I mean, we could you could even talk about avoidance of pre bolus thing and name a lot of different factors Yeah. That we've we've kind of talked about before.
Well, even when you bring up
I like it.
Fatalism, and the grief underneath it11:05
When you bring grief up there, like, kinda jumping into the second idea, like, that whole fatalistic, this doesn't matter. Everything's predetermined anyway. That's gotta just be grief to begin with. Right? Like, isn't that just a reframing of grief?
Like, you know, nihilism, basically? Is it doesn't matter? Everything's just spinning off. We're all gonna die anyway, like that kind of vibe. And I I mean, that just couldn't be I mean, there's obviously, that can be further from the truth.
There's a ton of things that you can impact around your health that will make, you know, the the the days and weeks and months of your life go by much smoother and more enjoyable. So, anyway, I feel like that's probably, like, kinda baked into that there.
Mhmm. Yes. Yes.
That's it. See? It's it's gonna it's gonna write itself as they say while we're while we're conversating. And they don't have to be long conversations either. They could be as long as they need to be.
If it's twenty minutes, if it's thirty minutes around one idea and we get through it, then then good. If it goes longer, I'm fine. Who cares? But in the end, what I would like is for I would almost like for the titles to be a road map and then the conversations inside of the title to be, you know, the pathway from rest stop to rest stop maybe. And and I just don't think that I mean, I don't think about my life this way.
Too far behind to start12:29
I don't imagine anyone does. Like, you know, when you when you when somebody says to you, hey. Let's clean your bedroom, and you look at it, and it's so buried under dirty clothes and and and ignoring for weeks and weeks and weeks, you do get that feeling of, like, I can't impact this, so I'm too far behind to start. But that's not really true. You know?
You just go one thing at a time, and before you know it, you find the floor. It's I mean, if that wasn't true, then the sink would be piled to the ceiling all the time. Because every day I look at it, I think, ugh, no one touched one of these dishes. I guess I'll start. And then it feels like it's gonna be forever, and 20 later, the the sink's clean.
So I I don't know. So that's just another kind of piece there, the I don't know. Around that feeling, like, there's just no sense in doing it because my a one c's already ate. And I again, just doesn't seem like the right way to think about it to me.
And I think the idea of, you know, one one dish at a time or one item at a time is helpful to kind of interrupt that feeling of overwhelm and, you know, things are there's so much to do. Where do you start?
Mhmm.
And thinking about it strategically in that way of, you know, small bite sizes. And maybe what we can also explore further is, well, how do we get into how do you initiate that first step? Like, what is it in your mind or body or heart that says, okay. I'm just gonna start this one dish.
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That's visit.twist.com/juicebox. Don't forget, twist has two i's. Well, that's gonna be the hard work you're gonna do on your own before the conversation. I don't I all the smart thinking will be for you. I'll say things like the dishes are piling up and your room is dirty and stuff like that.
But those are good analogies and images that we can all
relate to. Skills, Erica. That's all. Mine are just dopey. Stick, again, like, you know so there's that piece and then getting to the idea of, like, stigma and is like, what is stigma really?
What stigma actually is15:47
Right? Like, because why do I why do I care what how do I put this? I heard a guy telling a story the other day. His mom is retired. She's got plenty of money.
Right? And he's the one who's in charge of helping his mom buy something when she needs some. She's older, and she comes to him as an adult, like, when it's time to buy things. So the poor lady has, like I don't know. Somebody hits her car or something like that or a car stops running.
And he says, mom, you know, time to go buy a car. She goes out to get a car and sees one she likes but won't buy it. And when he asks why, she says, well, I'm afraid. Literally says, I'm afraid of what my friends would say. And I think to myself, like, that's insane.
Like, you you care what, like, your but there it is. She's a grown person. She's lived through this whole life, and she has the money to buy a certain automobile that she will not buy because she's worried about the stigma that comes with it. And is what is stigma is all I could think when I was listening to that because that's a self imposed thing. She's putting that on herself.
Like, yes, it might happen, but you can't feel it if you if you if you don't feel it. I don't even know another way to say that. Like, if you don't care what another person thinks of you, then I don't know what stigma is exactly. Does that make sense? And, you know, so I know that's probably not the prescribed way to think about outside pressure, but it's gotten me pretty far.
And, I would like to share it with other people. I don't give a shit what anybody thinks, Erica, is
all I'm saying. Yes. We yes. Okay. We know.
So well, I you know, I I'm pausing and letting that kind of settle in because I don't think I've thought about stigma in from that from that perspective.
From the root Yeah. My caveman perspective. I understand what you're saying. Yeah. Yeah.
I think of bullying like, cyberbullying the same way. That throws me for a loop. They're on a device you can shut off. When you shut off, they don't exist anymore. Like, I don't there are plenty of people who don't like me, and some of them spend time on the Internet talking about it.
If you're listening, any of you, I'm unaware of you and couldn't possibly care less. You're making no impact on my life whatsoever. But I don't know why some people can say that and mean it, and some people will be like, well, I can't buy that car because what will people say? I don't know. You know what I mean?
Yes. Well, I think there's I guess, when I when we when you said stigma, I'm you we think of the typical definition, which is kind of the the the negative or beliefs or attitudes that externally people hold. A group, society, the type ones versus the type twos, like, those kind of those stigmas that we hear and we know, that's external. Right? The public stigma.
And so what you are now defining is more the the self stigma. So based on whatever that negatively held view that is public, you then choose or not to internalize that.
We're gonna have a fun conversation around
that.
Okay. Okay. Good. Good. Good.
Sorry. We're going to
No. No. We're not.
To in-depth. Okay. So stigma.
You you never heard tickle their ass with a feather, Erica? It just you get them thinking about it. And they're like, oh, is that series gonna come out next year? That'll be awesome. I'd love that.
I'll I'll keep subscribing. Case they hit a couple clunkers along the way, they'll be like, oh, let me tough it out. I wanted to get to that naming this series. Let's information overload. I mean, that one is obviously as real as it could possibly be.
Information overload, and freezing19:31
So you just have to find a way to parse that information, and I think, you know, small bites. Right? But, also, how does information overload you know, from your perspective, how does it stop it? How does information overload turn into freezing or
Yeah. Or inefficient? Or nothing.
Yeah. Yeah. Yeah. Oh, you're right. Exactly.
Three problems with the appointment19:53
Then these kinda, like, little grouping here that's around health care. Like, they got it wrong. I paid the price. When you walk into an appointment, dreading the appointment thinking that, you know, the anticipation is is too much to take. And then once you the way I kinda think about it, like, once you come up with a idea that you would like to enact and the doctor pushes back, like, how do you do that without blowing up your relationship and and then probably causing another speed bump?
So those three might end up being one conversation. There might be three. I have no idea. We'll have to see as we go.
Yes. Those those are all so real and so valid that I you know, that there's that you could go back to naming stigma, shame, information overload. Those all of those initial themes, the avoidance
Mhmm.
Are all can be connected to your experience of the the doctor's office, what may occur, or what you might fear might occur.
The distress numbers20:57
The the diabetes this is just I'll just give you a number. Out of one of these, bits of research, from 2024, they think diabetes distress is at twenty one point seven percent in the type one community. So type one, we'll see at high distress, twenty one point seven percent, moderate to severe, thirty one percent in adults. And that's that those are numbers from 2025. So, you know, so talk about that piece to adding and naming it aspect to that.
And then the end of it really is so if, like, five to seven percent of newly diagnosed people receive receive some sort of a formal education in the first year. And so I kind of think that, you know, the safe you know, like, that's not a lot of people being given good direction. And then from there, I think self blame starts to jump in. All these other things jump in, and that's a structural issue, not a personal failure. But I think they all end up feeling like personal failures when they're over.
So if there's no class there, you gotta go find it somewhere else, and I don't know how you're supposed to be able to go find it. Like, I say that all the time about things. Like, I think if I knew what to do, I'd be good at it. But how am I supposed to find out what to do? Like, you know, when you look up at somebody Where do
you start?
Yeah. Like, where like, how am I supposed to get into the club who knows how to salsa dance or whatever? You know what mean? Investing. Like, you know, how do how like, how come I see some people have money put away for the future?
I don't know about that. You know? I Mhmm. Had a conversation with my daughter's friend the other day sitting in this room, And she's 22, and she's like, I'm gonna be working my whole life. I'm never gonna have any money.
And I was like, no. I was like, that I was like, you're you're two years away from a a profession where you're gonna make a reasonable amount of money. I said, you're gonna put, like, a a tiny bit of it away? She's And like, that's never gonna amount to anything. And I had to walk her through the you know, I said, look.
If you just take just take as, you know, the the poorest number that the stock market's done in the last ten years and apply it to the next ten years, if you put this tiny amount of money away, you know, every month, like, look. It turns into a million dollars. And she was like, oh, I was like, yeah. Like like, that it'll be okay. Like, you can do that.
You know? But she was given up. She's 22 years old. She'd almost given up. And and I was like, no.
No. No. Like, that's just but then I realized, I looked at her. I don't like, no one told me that growing up. It's a thing I had to try to figure out for myself.
But I also watched my brother figure it out for himself, and my other brother not figure it out for himself. And so she's she's a coin flip. Is she gonna get this or not? But all of sudden, somebody says it to her, and it makes sense, and now it's in her head, and now she's got a reasonable shot at doing it. And I feel the same way about the diabetes stuff.
So Mhmm. That's pretty much it. That's my idea. What's your idea? I gave you plenty of time.
What's your idea?
Erika’s idea: ambivalence23:59
Mhmm. You did. So I think my two themes that we I know we talked about that we probably have done series on. The first one is, you know, motivation for change, and I think we did do did we do an an episode on motivational interviewing, or we've talked about it? But thinking about avoidance, I almost appreciate and maybe not separate from or in addition to the word ambivalence, because avoidance can have a, you know, some emotion around that.
Like, you're you're being avoidant. Like, that's bad. That's negative. Has a negative connotation. It can.
It doesn't always have to. I think ambivalence also demonstrates a similar behavior or outcome
Okay.
Of of choices or patterns, but there might be different root causes underneath that. Like, so if we're talking about ambivalence towards diabetes, ambivalence towards your management, ambivalence towards, you know, whatever it may be, that's where people get stuck sometimes. And it might be for similar reasons, but I just thought that is a hard place. We all we all get ambivalent about different things in our lives. And if we and please remind me if we've already gone into detail about this, but I just I feel like it's coming up a lot more.
Okay. Well
And I think it's a good and hard topic to process through. But in in the in the umbrella of, you know, motivation for change and addressing the the the really a barrier, right, of ambivalence.
Let me tell you what I just did. I went to juiceboxpodcast.com/jbfaq. I went on the left side, clicked on mental wellness to keep my search just to mental wellness, then I went to the search bar and typed in ambivalence. Came back with episode eleven ninety six, which I'm now opening up.
Okay.
Erica and Scott define and discuss ambivalence and motivation. It's about an hour long conversation, but I'm gonna tell you if you think it needs deeper mining, then I think we should talk more about it. Mhmm. But why what's got it in your head?
I think when what is challenging, I will I will disclose, you know, as as a therapist when I'm supporting and working with individuals or families and a a client wants to make changes.
Mhmm.
But they are noticing that they can't. Part of the work that we do is trying to identify what are those barriers. Is it fear? Is it grief? Is it you know, do you need more exposure in education and awareness?
Do you need more social support, family support? And if if you don't need all of those things, then what is that ambivalent part where maybe you you want to, lower your a one c or you want to pre bolus. And while we don't go into the details of that management side, what we're trying to understand is, you know, what is what is interfering with that? Is it past is it trauma? And so I was thinking as particularly as you were talking about naming this series, perhaps we could go back Put it into that.
And connect it. Yeah.
Yeah. That's what I was just thinking when you were saying now. I thought, oh, we we should just put it into that series and make that fit there. That I didn't have all the answers. I just listen.
I came up with as much as my little brain could come up with. And then, and then my notetaker kept track of everything I was saying and then put it back into order for me because if it was up to me, I'd never I mean, you hear how I think. If even if I thought with a piece of paper in front of me, would just be a bunch of words, and then I'd be like, don't know what to do with all this. So, I just didn't hit on ambivalence when I was going through and chatting through the things that I found, like, valuable for us. So, yeah, put it on the list.
Okay. Yeah. So that that was for the add on perhaps to the series, but what has been really, ruminating for me is I know we've done the caregiver series, but the caregiver distress and the anxiety around the tech and the management and the hypervigilance. And, again, we I know we talked. Right?
Caregiver distress and the devices28:41
Have we do you wanna do the search again? What do you what
do you want me to search for? Hold on a second.
Caregiver distress, and tech, you know, device management, hypervigilance.
So this is more comes up in an episode called supporting caregivers, which is something that you and I did together. Yes. And it comes up in an episode called emotions of diagnosis, diabetes, distress. Mhmm. Sharing the care of a teen, one child.
I mean, honestly, I don't something that hasn't come up, but I don't think we've dug into it specifically, especially around the technology.
Yes. Yeah. Let's I think this, I've been thinking about this. You know, we talked, on the cruise. We this was this topic was addressed in in how, you know, parents support children with type one.
And you asked myself, and then you asked a parent, and you asked another person, you know, would you want it to be different? Or how how would you have preferred to be raised? And, obviously, when I was raised, we did not have Dexcom Follow or any of the follow ups Yeah. Thankfully. There's yeah.
Thankfully. Because I did not want anyone to know. And so I think there's this just something to explore and process. What does it mean for the caregiver to have this access twenty four seven? And, yes, it is certainly beneficial and helps reduce, you know, long term complications by being more in range more frequently.
There are all all sorts of data around that, but going back to the the emotional burden and toll that it takes for the caregiver to have this information.
Yeah.
And what do you do with that?
And what does it do to the relationship too? To feel because you're gonna feel spied on no matter what as you get older. Right? Like, at some point, it'll feel like, oh, my mom's watching. She's helping.
I'm okay. I feel safe because of this. But there's gonna be a moment where you're like, stop looking at me. I don't need you knowing what I'm doing all the time. Like, you know, I don't tell Arden that, you know, I can tell how she feels some days or, like, you know, she got a tattoo recently, and somebody texted me she's done.
And I looked and I thought and I responded back to that person, not to to to Arden. And I said, no. I can tell. Like, I could tell on her CGM when it started, and I could tell on her CGM when it was over. And I don't know that that's a I don't know that I would find that to be comforting if I was her.
Do know what I mean? So, I mean, comforting maybe, but not I don't really know how to put the words to it. I don't know if that's the thing you want other people being able to know about you unless you're sharing it with them. Right? It just it feels like a I don't know.
It feels like prying in a weird way.
I I I think understanding where it is, is it helpful, supportive, protective versus does it ever become feeling like a violation
Yeah. That's a good word.
Privacy. Right. I don't know. Is that too strong?
I'm not sure. I know. I I was reaching for a word, and I couldn't I couldn't find one there. But I I mean, not that it's purposeful. Like, it's not a it's not like punching someone in the face, but maybe the sting is there.
You you know? So I don't know.
Like, I I she's definitely taking it. Okay. Sorry.
No. Don't don't be you didn't speak I'm sorry. I wasn't looking up when you started talking. I thinking instead of looking at you. So
The I think conversations around, yes, when is that boundary crossed? And it will it will be, and that's part of life with type one. And then what do you do with that? And then conversations around how many, you know, displays are we gonna have in the house, in the classroom. What are you and, again, this this is all age and stage dependent and developmentally, you know, needs to be filed in that way.
I think so.
Just something to think about.
Yeah. Yeah. No. Like, because, hold on a second. There's a telemarketer trying to I I don't wanna be telemarketed.
So, Because there's a difference between and I think as an example, I think Sugarpixel is a fantastic device. And as a matter of fact, if you wanna buy one, use my link, and I think I make a dollar custom type customtype1.com/juicebox. But I have talked to people who's like, have one in my kitchen. I have one in my bedroom. I have one in the kid's room.
And at at a certain age, like, I get it. Like, you walk through the house, you see the comforting number or the color that makes you think, like, oh, in range, and it's comforting, and it's it's a little out of it's funny. It's instead of out of sight, out of mind, it's almost insight out of mind, if that makes sense. But there's gotta be a day where some people will think, could you please stop broadcasting my blood sugar all over the house? Right?
When the number is in every room33:41
Like, put it in one place. Have it where it's for sure needed. Like, I don't know. Like and I think that because you said age and stage is what made me think of it. Like, there's gonna be a moment where, like, a a switch is gonna flip.
Because I've been through a lot of switch flipping phases with my daughter through diabetes, and you think they're gonna end or you think, oh, that one was the last one. That's certainly not how that works. And so you move forward, and there's times where it's smoother. It's times where it's not. There's times where new problems come up, old problems reappear.
And in the end, my goal is always just twofold. Like, I want her to be healthy and prepared, and I'd like it if we still liked each other when this part's over. It's the two things I'm shooting for. You know? So so far, so good.
But
Yes. It's a
we're walking a fine line, I would imagine, some days.
Yeah. So there and there's no I think, wanting if we do go back and and have this kind of bit larger conversation around caregiver distress and devices and relationships, There's no right or wrong way, but I think what I would enjoy doing is having conversation and asking questions that you can ask yourself to be aware of. You know? When when is the checking serving you or not?
Mhmm. Yeah. I'm with you. Alright. Those are good ideas.
Making the plan35:09
See? Look at what we've done here. We've let people we've always done. We've pulled the curtain back. We've let them they basically are in our Zoom meeting where we're, like, trying we're trying to, like, work out what we're gonna do at work next time we get together.
Which one do you wanna do first?
Oh gosh. I don't know if I have a a preference.
Okay. Why don't we do why don't we do this? Why don't we do the shorter one first
Okay.
And then do the longer one after Christmas? Or and even that's too far. Maybe we can get it done before Christmas. Only do why don't we because it's August right now. You and I are gonna go do touch by type one.
If oh, by the way
In a month.
Septem what's the date in case this comes out before that? September? I got it. I it. Got it.
September 26. Touched by type one. It's free. It's in Orlando. Go to touchedbytype1.org for more information to how to get your free tickets.
Now I'm, like, pressuring myself into putting this out before the '20 I can do that. So we'll go do that. We'll come back. Let the summer end. You have children.
Let your children go back to school. Right? We'll let Labor Day we'll we'll, you know, we'll let the weather cool off a little bit. We'll jump in and do the short one, Then maybe we can do the series and get the series done before the end of the year so it can come out at the beginning of the year for people. And after that, we'll figure out what we're gonna do next.
That sounds like a good plan.
We have plans. Look at us. Yes. Awesome. I
should go I also have fun new new I have fun news that I am newly licensed in the state of Montana. Hello. I I haven't really said done anything about it besides put it on my website, but I am now licensed in Montana.
No kidding. You can now help cattle and 16 people. Is that correct? By the way
Hey. My dad's from Montana, so be be careful.
I'm not gonna listen to you. I'm gonna go the opposite of be careful. If it if if I had the ability to be somewhere else when it was snowing, I would live the rest of my I would live that four or five months in Montana happily. So
So beautiful.
Yeah. Yeah. Yeah. Please. Are you kidding me?
That's I just gotta leave before the 19 feet of snow comes. Yeah. I don't I don't think I have the fortitude, as they say, to to tough it out in a house
To shovel some.
For a week and a half before I can get back to, like, civilization. Although alright. I'm I'm also, I watched Yellowstone, and I loved it. So I think that I think that I feel like I could live on a ranch is what I'm saying based on the television
Depiction?
Depiction that I saw with with Kevin Costner. I I don't think I could throw a body off a cliff, but I think I could walk outside with, like, nothing but green in front of me. I think I'd be okay with that. So alright. Cool.
Well, congratulations. Tell tell us all the states real quick.
So Oregon, California, Montana, Utah, Vermont, and Florida.
Oh, six up to. Yes. Loving it. Ericaforesight.com?
Yes. Excellent. Thank you.
Yeah. Go get therapized by, Erica. Is that a word?
My husband likes to use it. Yes.
Wait. You're telling him what to do?
Never. Alright. I'll talk to
you soon. To learn more and see if you might be able to get Twist from the pharmacy and try it for free, head to visit.twist.com/juicebox. That's visit.twist.com/juicebox. Or give them a call at 18774. That's +1 (877) 489-4478, and tell them Scott sent you.
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#1935 My Body Beeps
My Body Beeps
Katie Lockwood is a therapist and author with cystic fibrosis and CF-related diabetes. She writes picture books that put kids with medical conditions on the page — including one about growing up with diabetes.
Jump to a moment
- CF-related diabetes is its own thing. Katie was diagnosed with cystic fibrosis hours after birth; over time it destroyed her pancreas, so she now wears a pod and CGM. She describes CFRD as looking partly like type 2 and, in most day-to-day ways, like type 1 — though without the same ketone risk. She takes around 20 medications a day and sees many specialists.
- The old advice collided with the new diagnosis. Because people with CF often struggle to keep weight on, Katie was raised on ice cream and Chinese food — and when diabetes arrived, the early guidance was essentially “keep eating that, just add insulin.” She talks candidly about how the goals, and the life expectancy she was given, have shifted dramatically across her life; born when it was around 18, she just passed the number she grew up expecting.
- She turned her experience into books. A therapist who supports families affected by disability and illness, Katie writes picture books that give kids authentic representation. My Body Beeps is about growing up with diabetes and shows a CGM and a pod on the page; others cover surgery and rare conditions. Each runs roughly $10,000 to make; she works for free and crowdfunds so she can give many away.
- Her daughter has Mobius syndrome. Katie's older daughter was born with a mild form of Mobius — affecting the cranial nerves that move the eyes and drive facial expression. Unable to find a book about it, Katie wrote one, Why Me Mama, with an owl as the main character (owls turn their heads instead of moving their eyes). The real children she connected with became the story's other characters.
- Representation is the mission. Katie didn't grow up seeing herself in books, and wants kids dealing with “extra stuff” to see themselves on the page. She invests in professional illustration, editing, and design so self-published doesn't mean lower quality, partners with foundations and camps to distribute copies, and is now working on a sequel to My Body Beeps set at diabetes camp.
- Katie Lockwood — Acorn Cottage Press — Katie's books (My Body Beeps, Why Me Mama, My Surgery Day) and how to reach her: acorncottagepress@gmail.com.
- Bold Beginnings series — Scott and Jenny Smith for the newly diagnosed — the free starting point mentioned in the episode.
- Juice Cruise 2027 — The third annual Juicebox community cruise, booking now.
Every word of the conversation
Cold open & sponsors0:07
Hello, friends, and welcome back to the Juice Box podcast. On today's episode of the podcast, there will be nothing that you should take as advice, medical or otherwise. So please, please consult a physician before making any changes to your health care plan or becoming bold with insulin. Let me ask you two favors. Do one of them.
Do both of them. Do none of them. I'm not really in charge. T1dexchange.org/juicebox take the survey. Juiceboxpodcast.com/survey take the survey.
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CF, and a pancreas it destroyed2:07
Hi. I'm Katie Lockwood. I am a therapist, author, educator, and I have cystic fibrosis and diabetes.
Katie, type one.
And I'm coming from Cape Cod.
Oh my goodness. You have type one?
I have CF related diabetes.
Oh, explain.
So cystic fibrosis is a genetic condition that I was born with, and it affects all of the organs in my body. And one of the things it did was destroy my pancreas. So I now have insulin dependent as well as so I wear a pod and a CGM.
What else does it do? Is it is it out there, like, running roughshod through the neighborhood with a bat? Wait. What's going on?
For many people, it does. So I was diagnosed a couple hours after I was born because I had some GI issues. And one of the things is that my body doesn't process fats appropriately
k.
Including vitamins that are fat soluble. Mhmm. So I take about 20 different medications each day, have multiple treatments. I'm seen by many specialists. Primarily, the the biggest impacts are on the lungs and the digestive system.
Do you have any issues with your lungs?
So I'm relatively very healthy, but it is a lifelong chronic condition. And so I can get so I typically will catch colds and things a little easier than others. It will take me a little bit more to get over them and to kinda get always try to keep up to that baseline.
Are you telling me you don't worry about global warming or you just get sick more often?
I get sick more often.
Okay. Okay. Alright. I I appreciate you laughing at my fairly morbid joke
four minutes ago. I I did grow up with a chronic illness.
Oh, okay. You you
Several of them.
You know how to swing hands on this, I would imagine. Brothers and sisters?
I do. I have one younger brother. He's six years younger than me.
Does he have any issues?
No. He is very healthy and surfs and climbs and all of the things, but it was a decision that my parents had to and his parents too, I guess, had to kind of navigate through when they had me and if they were gonna continue to try to continue their family.
Yeah. They're a glutton for punishment, those people. I mean, honestly, being like, joking aside, like, can you I mean, do you do you have children?
I do.
Yeah. Can you imagine giving birth, and then they're like, where's the baby? And you're like, actually, hold on. Let me tell you a couple of things, and that's what you get told?
Yep. Yep. It's like, no. We don't have time to weigh and measure her. We're gonna ship her next door to Children's.
My goodness. Have you ever talked to your mom and dad about it?
Yeah. Yeah. Especially my mom. She raised me as such a wonderful advocate and always pushed me to kinda do everything I could possibly do
Mhmm.
But with also some slight overprotective tendencies.
Yeah. Yeah. She talked about the impact on her ever, or does she keep that from you?
I think to an extent. We've talked I'm I'm I'm a couple specialists as well in my therapy, and we have had several conversations about how much it can impact the family and the couple and kind of how that impacted her relationship with my dad.
Oh, did she have to get rid of him?
Yes. Yes. Just threw him off the boat.
I would imagine. She's just like, that's enough. I'm voting you off the island now. It's enough. How long did they make it?
They waited until my brother graduated high school.
Oh, that's very Caucasian of them.
Very, very convenient for me.
For you? Why?
Yeah. Well, they waited until I got married too, so that was helpful.
Oh, that's very nice. And then did they, like are they are they, like, in a a lifelong blood feud? Do they get along? How is org?
You know, divorce is never pretty, but they actually do an exemplary job Very nice. With at this point. They're at every holiday, every event for my children, so I really couldn't ask for more at this at this stage.
That's very nice. It it is the story that they that that the illness is I mean, how do they tell it? Are they hanging it on you, I guess, is what I'm asking? Or what what
is it?
No. Think that's more a more nuanced
Yeah.
View of it than I think that that did have an impact, though, on they had a little one with something really serious, and they had very different approaches on how they were gonna handle that
Yeah.
Or if they were able to process it. And so I think my mom took on more of the caregiving and the medical burden. Mhmm. And that that impacts you over time.
Is it difficult on you to know that that happened?
No. But I I can see as a parent now and in a very happy relationship with my husband, I can see how it easily can become that. And so it's something that I've always been really mindful of.
Okay. Very well. It's it's interesting. I appreciate you sharing that. I'm I'm assuming that's not what you thought you're gonna be talking about in the first five minutes.
But I'm
a fairly open book. So wherever you go, I'm good.
I do really appreciate that. Okay. So you grow up do you do you call yourself type one, or do you use is this feel like a you know, like, when people have three c, for example, they're like, well, I don't really have type one diabetes. I had a surgery. And then, like, how do you think about it?
CFRD: type one, with its own rules7:42
So they call it CFRD, so cystic fibrosis related diabetes. Fancy. Yeah. Yeah. My understanding is that it kind of shows up in some ways like type two and in many ways like type one.
Like, I don't seem to have an issue with ketones.
Mhmm.
But in many other areas, it it's very similar to a type one diagnosis.
Yeah. So when when you have to tell somebody, do you just say I mean, do you give them the whole thing, or what do you tell somebody in, like, casual conversation?
I think I just kinda say cystic fibrosis and diabetes.
Gives them the idea that there's been a car crash somewhere, and they go Yeah.
There's a lot going on.
Yeah. Yeah. They go, okay. And they they don't ask a lot of questions after that, I imagine.
Yep.
Yeah. Cystic fibrosis probably scares the hell out of people in general conversation. Right?
Yes. Yeah. I think we'll if they've never heard of it, it's like, are you contagious? It's the first question, which I am not. Although it is a it can be really scary, and there's certain germs that people with CF have that can transmit to other people with CF
Oh, wow.
Which is atypical, I think, in just kind of disease territory.
Mhmm. And how would you know?
You would only know if someone told you.
Yeah. I was gonna say.
Although I was at a meeting once and someone's coughed, and I said, I'm so sorry to, like, ask you a question, but is do you have this? And she had something very similar. And I was like And you locked it in fascinating. We're now Facebook friends. We try not to be in the same room.
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Whoo. Thirty minute warm up time. That's right. From the time you put on the Dexcom g seven until the time you're getting readings, thirty minutes. That's pretty great.
It also has a twelve hour grace period, so you can swap your sensor when it's convenient for you. All that on top of being small, accurate, incredibly wearable, and light. These things, in my opinion, make the Dexcom g seven a no brainer. The Dexcom g seven comes with way more than just this. Actually, up to 10 people can follow you.
You can use it with type one, type two, or gestational diabetes. It's covered by all sorts of insurances, and this might be the best part. It has alerts and alarms that are customizable so that you can be alerted at the levels that make sense to you. Dexcom.com/juicebox. Links in the show notes.
Links at juiceboxpodcast.com to Dexcom Omnipod and all the sponsors. But you can remember it. Dexcom.com/juicebox. Check it out. You can tell by their cough because it sounded like a cough you had?
Yeah.
That's fascinating.
Yeah. Yeah. It's really interesting. It's No kidding. It's also it's hard because when I was a child, they did not have the safety protocols that they do now.
The germs, and the end of CF camp11:17
Mhmm. And so I became very close to several people, and, unfortunately, most of them have passed away. So that was a a big part of my adolescence and kind of journey. But now you're not allowed to be within six feet. And so they kind of stopped a lot of the fundraisers that I grew up with that were really a joyful experience.
Yeah. I was gonna say that that puts a damper on the get togethers for sure.
It definitely does.
No camp, I guess.
Oh, yeah. That's a big one that used to exist.
Oh, no kidding. Yeah. When did they find this out? Like, what year did did what year did somebody go
I was alive Yeah. Because they had some kind of camp. I was too young to do a camp by myself. Mhmm. But I remember we went something with my parents when they had, like, activities for the kids to do together, and then the parents had different support groups.
And then something happened at an older camp where one of the bad CF germs passed over from one patient to another, and then the person who got it passed away.
Jeez. In that time, like, didn't take long for it to happen.
Yeah. It didn't take long. And so and then it was it's just too much because then the other person would did not pass away. Right? Yeah.
But that that was the end of the CF camps.
That was that. Yeah. Now we just just mail you a check. Yeah. Yeah.
We don't need to we don't need to see you. Thanks. Well, that's really that is really by the way, people should really appreciate how good I am at this. I got a lot of interesting information out of you in just a couple of minutes on something that they didn't think they were gonna learn about. Yeah.
Yeah. Yeah. Okay. So but let's let's jump to it a little bit. Growing up with diabetes, were using an insulin pump.
Did you get a CGM at any point? What do you you said you have it now, but at what point did that stuff happen?
Ice cream, insulin, and shifting goals13:07
I was a teenager.
And how old are you now? I'm sorry.
I'm 38.
38. You were a teenager. You got a pump. Did did it make things easier?
I think at that point you know, I grew up with CF, so adding the diabetes was really hard for me. And I think a lot of it is intertwined because with CF, typically, people are underweight and, you know, struggle to keep on weight, things like that. So I was raised on, like, ice cream and Chinese food.
Oh.
And then adding, you know, the the failing of my pancreas to continue kind of shifted a lot of my eating habits and kind of how I need to take care of myself.
Yeah.
But the CF community really wasn't on top of that. They kinda were still in the, no. Eat all of the ice cream still, but now give yourself insulin. So but the the goals at that stage, I think, were different than what they are now.
Uh-huh.
And the life expectancy was very different. So I'm sorry. CF goals. Complex. CF goals?
Yes. Yeah.
Oh, the goals back then were what? Like, have a bunch of ice cream die early?
Yeah. Pretty much. Like so when I was born, the life expectancy was around 18.
Get out.
And when I was a teenager, the life expectancy was 38. So I just celebrated my, like, life expectancy birthday this year.
Yeah. I guess you're done. Well, I mean
I know. And now I need to work on living to 80. So
Have they changed that number? Or is
It has. Luckily, it just keeps rising as I get older. So I figure
following you.
It's just following me, so I just have to just keep going with it.
What what is the new age?
So it changes depending on when you were born. So
I see.
Currently, maybe somewhere in the forties. But if you were born now and had axe have access to the newer medications, Mhmm. They're projecting, I think, somewhere in late forties, fifties. Oh my god. Expect that to continue to go up.
Hey. That's that's it that's the thing you live with every day.
Yes.
Yeah. How how do you deal with that?
So a few things. I think I have a pretty positive attitude.
Mhmm.
I was raised to not live like I was going to die at those ages. I was five when my mom told me that I had to go to college because I need to get good health insurance.
And so paying for this for the rest of my life, kids. Let's go.
Yeah. Yeah. And then but you know what? When I got my second master's, she was like, do I have to go to this graduation too? Like, mom.
Did this.
Not me. Yeah. Yeah. Yeah.
Yeah. This is your fault. You can buy me dinner.
I was I was planning on hanging out in a parking lot and dying when I was 18. So you're you're the one that made all this happen. Yep. That's really interesting. Do you are there any people that can found those age survival ages or not really?
That go past them?
Yeah.
Yes. Yeah. There are. There are some people in their seventies and eighties. There's also been a lot of people that are diagnosed later in life.
Okay. Especially men when they're trying to
have
children because they they are missing their band's deference. And some people are are very mild symptoms. Some people maybe struggled with, you know, asthma and, like, constant sicknesses and then just didn't have a great doctor.
It just kinda piles on a little bit. Yeah. Wow. You said did you say I think you misspoke and said vas deferens, which threw me off for a second.
Oh, what is it? Vas deferens?
It's vas. Yeah. Yeah. Like vas deferens. And I know that from eighth grade biology class.
Thank you, everybody.
That's that's good. Yes.
Last day of eighth grade biology, I stole a stapler off of my teacher's desk because I didn't like her and kept it like a trophy for many years.
You you watched the office of The Office Space?
Oh my goodness. That's I was way before that. Don't worry. Okay. They might have got that from me.
Okay? Yeah. Yeah. I yeah. Yeah.
No. I I did that in front of her, by the way. It's one of my proudest moments. She was I'm not I I wish I was joking. She she was seated at the desk, and while I was talking to her, I took it.
I've never been so proud of my life.
And you you got out with it, so that's
pretty awesome. My it's it's it's a fantastic stapler. I kept it forever and ever. It was it was literally there just to remind me that anything is possible. So my goodness.
Yeah. Yeah. Yeah. And you cannot make a baby without vas deferens. That's gonna be tough because that's that's where the little sperms go.
You know what I mean. You've got it all figured out by this point. Wow. I appreciate you explaining all that to me. I really do.
Yeah. Of course.
Yeah. Yeah. So were your outcomes with your diabetes not great a one c wise because of the way you were eating and probably how the understanding of diabetes was back then, or do you even know what your outcomes were back then?
Outcomes, and advocating off insulin18:32
You know, I should really ask my doctor. So I've had the same doctor now for about fifteen years. I'm sure it's somewhere in the records. They weren't my numbers weren't terrible because they knew that diabetes is a pretty well linked thing to CF, it was something that every time I had blood work for my CF appointments, they would check for.
There were
no big threats about that. Yeah. So there wasn't, like, a huge period of time where we didn't know.
Yeah. What was your understanding of what you were doing for your diabetes back then? Just were you counting carbs, or how were you handling it?
Yeah. I was counting carbs and then just kinda learning more about the different equipment, things like that. I think they they wanted to put me right on insulin, and I think there was a little bit of a period where I advocated to try some of the medicines because I also didn't never was really struggling with being underweight at that at that stage. So I found that their argument for not for for just kind of hopping on insulin immediately wasn't sufficient for me at the time. And I did I was able to with, I think, glipizide and something else.
You made it for a little
bit? Hone a a bit. A couple years.
Okay. When
did CGM Which gave me some time to kinda, like, process
I was gonna say, right, to get your head around the whole thing. Yeah. When did CGMs come into your life? At what age?
My early twenties.
Okay. It's just it's half your life then?
Yeah. Almost.
And and then do you become a therapist because of your situation?
I think it definitely impacted kinda my trajectory. I originally got a degree in public relations and journalism.
Mhmm.
And then I only applied to nonprofits because, apparently, I didn't wanna pay any bills. And then I went through I decided I wanted to work in the schools and work with kids. So I did teach for America and taught special ed for a couple years. And at the same time, I got a master's in counseling.
Very nice. Do you see people virtually, in person? Do you have a, like, a practice that you that you're supporting?
So I am currently I work part time for a private practice doing telehealth.
Mhmm.
And I specialize in supporting families that are impacted by disabilities and medical conditions. So I see kids with type one. I see parents that are raising children with different diagnosis. Also work for a school full time that is also remote, which is great, but I used to work in the schools in person before COVID.
Must be fulfilling. No? Yeah. Yeah. That's lovely.
Do you
feel like you're helping yourself while you're helping them?
I do. I think kind of the biggest, like, side thing that I've done that's really helped me has been writing books. Mhmm. That's really felt really like, my brain did a lot of work processing and being able to support others through that process.
Becoming a therapist who writes books21:44
Multiple books. What kind of books?
Yeah. So I write different books about differences and medical conditions. The one I think that's probably the most topical for for you is it's called My Body Beeps.
Okay.
And it's about growing up with diabetes.
Alright. And then from your is it a a children's book? Is it a
It is. Yeah. It's a picture book.
Alright. Oh, picture book. Nice. And then but you do it for other disease states as well?
Yeah. I'm working on creating a little series, but I also have released one about preparing kids to have surgery. So my surgery day.
Oh, I'm looking right now. I see MyBodyBeebs. That's your name. I I got the whole thing worked out here.
Yeah. And that's me as a cartoon.
Did you get somebody to draw it for you, or did you do it yourself?
Oh, yeah. I don't have those skills. You don't have those skills. I've I've been able to partner with some amazing illustrators.
Yeah. Oh, this is lovely. Look at you. How long have you been at this?
I started writing in '21.
Okay. Five five years or more.
Yeah. About five years.
You've been kind of prolific here.
I'm working on it.
Is this a a labor of love? Is it, like, a legitimate business? Like, do know what I mean? Like, what we kids book.
So it's it's definitely more of, a mission focused project. Yeah. Authentic representation of disabilities is not very common. And I think especially the authentic part and traditional media, we don't we don't get to see ourselves. And kids that are dealing with extra stuff really, really need to see themselves on the pages and in the world around them.
K. Do you get to hear back from people that have read the books? Are you getting any feedback about them?
Yeah. Yeah. I hear from people all around the world, and I see pic I get to see pictures of them holding, like, the doll I had made and the books. And I get clips of them bringing the books to school to read with class or sending them to the school nurse's office depending on kinda which which title it is. I typically do a, like, a crowdfunding campaign for each project because each book cost me a maybe around $10,000 to create.
So those the funds that come in help me pay the illustrator, editor, book designer. I work for free, and and then I I'm able to send people packages kinda once it's done.
What's the draw of spending the I mean, do you I guess the question is, do you make that money back, that initial investment? And if not, then what's the draw of just not keeping it online?
So for the offset print run, a lot of a lot of the expenses kind of would need to happen regardless if it's just online or not.
Mhmm.
So if I wasn't gonna do the print run, it would save me a few thousand, but it's still an over $56 investment for each one.
So mostly is that mostly artists and Yeah. Typesetters, stuff like that?
Yep. The illustrator and then editing and book design.
Yeah. Wow. That I mean, when you when you don't think you're gonna, like, you know, 10 extra money, that's a really nice thing to do. It it really so what are you getting out of it? The you must be getting something awesome out of it.
I feel like a lot of it's, like, not definable, but I didn't grow up with representation around me. Mhmm. There wasn't characters or, you know, anything that showed who I was as a kid. And then my daughter was born with her own rare diagnosis, which was a shock.
Oh, no kidding.
Yeah. And so we I looked for books because here I am, a therapist, an educator, disabled, and I couldn't find anything about her rare condition. And I was like, oh my gosh. So that's what made me do my first my first project.
Her daughter, and Mobius syndrome25:56
And this is something completely your your child, this is something completely different than what you have? Yes. Would you share?
Yeah. So she has a mild form of Mobius syndrome, which I had never heard of, but it's the impact of the sixth and seventh cranial nerves.
Oh, I thought that was a Spider Man character. So thank god you got deeper into that. Yeah.
Yeah. Yeah. I do I saw a boat recently that had that on the side. I was like, I had just, like I think there's, a graphic the graphic novel.
Like, I don't think you guys understand that word. Yeah.
Yeah.
So wait. It it seriously, explain that a little slowly. What is it now?
Okay. So to have the true definition of mobius, your sixth cranial nerve needs to be impacted. That is when we take our eyeballs and we move them left and right.
Mhmm.
That nerve, its only job is to move your eyes left and right.
Really?
She was not born with that one.
Is that like a deletion kind of thing?
They say it's not genetic, and we've done all of the testing, and they don't know why it happens. My theory has to do with, like, some kind of blood flow issue at some point, but I'm not I'm not the expert as much as I think I am.
Is it is it incredibly rare? Yes. Is it more is it
more or less than rare million.
Than CF?
Yeah. Way rarer, which is fascinating because CF is a rare disease.
Yeah. And it affects males and females equally, it says here.
Yes. And there can be up to 20 different things impacted, including limb differences, a lot of like, hypotonia, it's a low muscle tone, hearing, vision, like a whole bunch of stuff that can be a part
of it. Wow. Hey. The numbers that came back to me fibrosis excuse me. My lip literally stuck to my other lip.
Occurs in roughly one in three and a half to four thousand births in The US. It says about forty thousand Americans are currently living with it. Mhmm. And then the Mobius is one in every fifty to two hundred and fifty thousand people. Yeah.
That's really something. My goodness.
And I think there is some issues with people getting appropriate health care and getting appropriate diagnosis.
On the Mobius.
With the Mobius. Yeah. I'm sure with CF two depending on where you live.
But Sure.
They seem to be do a better job of that, at least right now. There are some other conditions that are similar to Mobius and have the same, like, I would say, emotional impacts, but are slightly different. So if your eyes can go side to side but can't go up and down, that indicates a completely different condition.
Okay. Hey. Would you do something for me? Yeah. The social emotional impacts that you just just mentioned.
A pause, and a GLP aside29:00
Would you I don't I never do this, and I apologize. Wanna I go to I I have to pee. If I got up and went to the bathroom, would you think about that? And then I'm gonna come back and hit record again. You can answer that question?
Yeah. Absolutely.
I will not be long, and thank you. You're not being recorded while you're thinking. So if you wanna you're okay. I'll be right back.
Ladies and gentlemen, hold the phone. Scott's gotta go take care of his own. Two liters of water since quarter past three. So we're pausing the show because the man's gotta pee. He's gonna pee.
He's gonna pee. Sixty seconds, then he'll be back. Don't touch that dial. Don't lose the track. But while he's gone, let's talk about you.
Type one diabetes and you don't know the way. There's a place you can start and it isn't a guess. It's bold beginnings and it's free. No
Okay. Sorry. I'm back. You're being recorded again. I for people who are interested, two things.
Yes. I wash my hands. And the second thing was that I missed my GLP by a a day or two, and I almost immediately start gaining water weight when that happens to me. And then I took it last night, and now I'm I'm losing the water weight really quickly. I I when if I don't know if you've ever heard me talk about this or not.
Maybe you have no idea who I am. That would also be valid. But when I started using a GLP, they don't put you on a what they even consider to be a very like, a therapeutic dose in the beginning. And on the lowest dose, I lost, like, 14 pounds in the first week, and it was almost all water weight. It's incredibly uncommon, and it wasn't because I stopped eating.
So I think I think my body just doesn't work very well. And so, anyway but who am I talking to? I'm not trying to take not trying to take that torch from you, Kate. Don't worry. You're like, what do you literally, you're not the right person to get in a pissing match with about something like this to bring the whole thing full circle.
What the seventh cranial nerve does31:46
But sorry about that.
No. No worries.
Yeah. Yeah. So if you could if you could fill me in a little bit about what you meant by that, I'd appreciate it.
Yeah. So kind of look at the therapist hat on, you
know,
the condition in addition to the eye difference. The seventh cranial nerve is much more complex, and it has a lot more jobs in our body.
Mhmm.
And one of them is that it provides all the innervation in our face, so all of our facial movements. So the typical presentation of someone with moebius is that they have a lack complete lack of expression
Oh.
Which would have you know, has a lot of emotional impacts and a lot of societal impacts when we talk about relationships and jobs and, you know, mental health. It's just a lot there.
Yeah. How old is your child that has it?
She's almost six.
And are you noticing those things for her?
She is real we are all really lucky that her seventh cranial nerve is not completely missing. It's shorter than typical. So she has not as robust expressions, but she has full expression. And so there's no one that has ever really called out other than a medical professional about that, which I think, terms of the social emotional impacts, is huge.
She's she can pass, so to speak.
Yeah.
Yeah. Mhmm. And does she know what's happening?
She knows that her eyes are different. And, you know, we've and her speech was a much more difficult journey Mhmm. Than perhaps it it would have been. And she also has the low tone, so she falls all the time. But she does everything, you know, from what we were leaving the NICU worried about to now.
Like, we're in, like, a very different place.
And how many kids do you have?
Two.
Two. Was she the first?
She was.
And how old was she when you knew?
Three weeks. We were we were it was during COVID, and we were at one of the NICUs in Boston and had a $100,000 MRI.
Oh.
That was a fun bill. I just laughed because what else are you gonna do?
Was it extra good? I
I think so. They do cross sections. So it's like a three t MRI with cross sections of the brain because the cranial nerves are really tiny.
Did it have any value once you got the information back?
It did because it gave us a reason for why she was struggling to eat.
Well, that's good.
Yeah. So because of that lack of the reduced innervation, she has had a really hard time sucking on a bottle or a breast. So
Gotcha.
So we ended up with a an NG, so through the nose, feeding tube for the first six months.
And you still went the way of your mom, and you were like, we'll have more kids.
Yeah. But we did we did do genetic testing to see if it was, like, a a really strange other genetic thing that
could tell you that laugh you just gave me was very telling. You you you your laugh went like this. Yeah. I don't know what's wrong with us either, Scott, but thanks for asking. Yep.
Yeah. Well, that's that's really next child's okay?
Yeah. No. She's good. She was of course, you know, she can't I would have written a book about her too, right, just for fun, but she was born premature and had hip dysplasia. So that she's the character in the surgery book.
Okay. Okay. I was gonna ask how do you like, I assume there's a book for your for your child, but you can't write a book about Mobius. So what do you do? You pick some aspect of it and make it a broader topic?
So it definitely it was my first project, and so I broke a lot of the picture book rules. So I ended up doing a character for every aspect that can be seen in Mobius. Oh, I Pixar made a
movie about that. Yeah. Yeah.
With animals.
Nice idea.
So do you know which animal doesn't move their eyes?
Okay. Hold on a second. I see what we're doing here. It's like a test. There's an animal that doesn't move its eye sharks.
No. No. And I'm saying, like, moving them side to side. They turn their head instead.
Oh, it's an animal that turns its head instead of moving its eyes. I feel like this is gonna be, like, some flamingo? No. Alright. Tell me.
An owl.
Oh, who? Who? Uh-huh. Thank you.
Yes.
I can't believe I didn't think of that, but that's okay. So you make the owl the I got you. Go ahead. What else?
So Rose in the book is it's called the book's called Why Me Mama. So if you pull up, you can check it out. And Rose is the baby owl in the story. And the story is just about her getting ready for her birthday and worried that people that won't wanna come, the other woodland creatures, because she feels different.
Mhmm.
And mom takes her around delivering invitations, and Rose sees how everybody's different. Sometimes we see it, and sometimes we don't.
Yeah. That's lovely. Good
for you. And all the characters are real children around the world that I had connected with either in the Mobius community or through the Kickstarter.
Okay. Oh, you kickstarted the book?
I did. I raised $23,000.
Get out of here.
Yeah. I had no idea what I was doing either. So
Is Kickstarter still a thing? Is it still working? I know somebody made a board game with it.
Oh, cool. Yeah. It's still there.
Yeah. Do you use it still, now you have other ways?
I'm still working on the other ways. I now do kinda, like, smaller campaigns. My my goal for this one was 6,000, and it just, like, kept going.
I see.
But it got some, like, media attention too. But now I kinda it it doesn't raise that much money.
Yeah. Because because social media changes so quickly.
Yeah. The
Why sharing got harder37:56
things that work five seconds ago and I don't even mean, like, raising money. I I always I mean, my my best example would be when I was writing a blog before I was making a podcast. I could put something on Facebook, and tens of thousands of people would see it in twenty four hours. And now that doesn't work that way anymore. Just that simple.
Like, because Facebook wants to sell ads, they don't want
Oh, yeah. Yeah. Yeah.
Right? So but then the the shift that that puts on on the your ability to share things is it it's really immense. And then there's more and more people doing the same thing, and then you can't differentiate yourself. And it's it's it's interesting how they're gonna they'll say they changed it, but I think they're ruining something.
So There's also only so much time in the day.
Yes.
And taking care of my own health, my kids' health, taking you know, working, paying bills, also trying to wash watch some trash TV occasionally.
Like Yeah. How many
things do you really the books.
Yeah. Yeah.
Up a lot of time.
Yeah. No. I I appreciate that too. It is it is listen. I don't know what's right and what's wrong and or how things will shake out.
I I can just tell you from my perspective.
It's definitely different. Yeah.
Yeah. It has really changed, and it it will stop people from sharing good good information. You're just gonna I think what you're asking for is for everybody just to bend their leg and arch their back and bounce once, and then that's what apparently, that's what it's gonna be one day. Or people or people beating each up out in the parking lot of a seven Eleven or something like that. So, anyway, I think they say you get what you deserve.
I think we're gonna end up getting the social media that we deserve. Anyway, so you're in the
middle this I try to train my algorithm to show me kittens and puppies and, you know, nice nicely renovated vacation homes. But
That's the thing. My wife my wife has so many photos of homes and, like, rooms and things like that. I'm like, what's that for? She goes, that's just stuff I like. And I was like, what are gonna do with it?
She goes, I don't know. Probably nothing. I went, oh, okay. So at least that's at least that's a nice thing. You know what I mean?
Yeah. I don't wanna complain because I'm I'm having I'm in a bad mood this week about it, so I don't wanna start talking about it. It just is I don't know. It's fascinating to me. And it's gotta really impact trying to sell a a physical book to somebody.
Yeah. It it's also hard, I think, you know, the books that I create aren't all really created with, like, an Amazon audience because I'm limited in kind of getting the word out about them. Mhmm. And I if I'm able to do, like, a craft fair or things like that, I I have just an easier time kind of sharing out about stuff.
Do you know I wrote a book?
No.
No. I wrote a book in 2013, and selling a book is maybe the most difficult thing I've ever tried to do. It is just it is just not easy.
How did it go?
I mean, not not well. I I wasn't famous, so the publisher didn't put a lot of effort behind it.
Okay.
I did a I got a lot of media for myself. Actually, one of those media things is the reason the podcast exists now.
Okay.
Because Katie Kirk told me I was good at talking to people. It's her fault if you don't like the podcast. And but but along the way, I I got myself on NPR. I got myself, like, in my hometown newspaper on Father's Day, like, stuff like that. You know?
Like, like, difficult stuff, but nothing worked as well as I've I've told this before. I'll tell it to you very short because other people have heard it already. But after the Katie Couric interview, she made either I forget if it was AOL or Yahoo, but she used to have a, I don't know, presence on one of them or, you know, I I don't know, some sort of a business agreement with one of them. And the article about my me being on her show, it blew up. And the way it blew up is that people in the the the comments were arguing as to whether or not it was a closeted homosexual or not because men don't stay home with it.
Because I was a stay at home dad. That's what the book was about.
Oh, okay.
Yeah. So while they fought about that, I actually rose to number 50 on Amazon's list.
Oh, jeez. Yeah.
It just didn't last that long.
Yep. Yep.
And so it went away, and then I, you know, I took my they never asked me for my advance back, but the truth is I don't know if I cleared it or not, to be perfectly honest.
Well, I think I I have never done a traditional deal, but my understanding is that your advance, get to keep whether or not you get anything after that.
I I was told I had to sell it, so I don't know what ended up happening. But I know nobody ever asked me for any money back.
So Okay.
Yeah. I said that yeah, I bought a McDonald's with it and a and a tank of gas.
Yeah. So But it seems like it helped lead you to the next thing.
It did. Yeah. And it was a really great experience, actually. The entirety of it was a great experience. It just you I was never gonna be able to sell the book.
Mhmm. You you know what I mean? So it it leads me to ask you, like, what do you consider, like, success when you're when you make a book?
I think, partially, my goal financially is to break even. Yeah. That's my goal. So anything more than that would be lovely. I really wanna just be able to get them into the hands of as many people as possible that really need them.
And, ideally, I'd like to be able to give them away and have them sponsored by other people. And I think I'm I have not seen any anyone else crowdfund in the way that I have more people that pledge to my campaigns for me to give the things away
Mhmm.
Than that than for them to get them.
That's interesting.
And I I think that people can buy into like, they buy into what I'm doing, and they see the value, and that's really nice. But it's it's at at such a small scale Yeah. That it's hard to kind of like, I know there's so many more kids that would benefit.
What kind of a company could you see getting behind, like, buying the books so you can give them away?
Yeah. Well, I think for, like, the that my my body beeps, like, there's the visual representation in there of the CGM Mhmm. And the Omnipod. So, like, having some kind of a relationship with something like that would be amazing. I did one nonprofit in the Midwest is collaborating with me.
They ordered 500 copies, and they're including a copy with each family package that they send out
That's lovely.
Which is really, really lovely. And that, I think, is kind of the direction I wanna go in is to be able to do more of those kinds of partnerships.
Oh, that's awesome. Good for you. Yeah. And now do you kinda have the the footing about how to do it since you've done it once?
No. Because they re they they found me. To you. And so they reached out to me and was like, you know, we didn't even budget for this, but we love it, and we really wanna include it. You know, will you do do, like, a wholesale thing?
And I was like, yeah. Absolutely. And now I kinda need to figure out how to approach other organizations. And because they do like, other organizations do do that, that they send out, you know, the different boxes or, you know, a doll and a book or things like that. But
Getting the books into hands45:40
Well, I wish you luck. I hope somebody hears this and and reaches out to you. Where would they get ahold of you for that?
Think just email. I'm at acorncottagepress@gmail.com. Okay. And I I answer my my DMs on Instagram pretty well.
Very nice. I just had a person I interviewed say to me, did you answer my email with AI? And I went, I might've. I I I have a I get a lot of emails. And and I was like, I'm not embarrassed, but, like, I I said, sometimes I sit down.
I I answer, like, 400 emails. I'm like, I don't like, I can't I can't. You know what I mean? Like, I'm trying. But that's really the way I hope somebody does reach out for you.
Somewhere in the Midwest, like, can we shout them out, give them some credit for doing it?
Yeah. Let me I'm gonna share the correct information. I believe it's Kids With Courage. Yeah. The Kids With Courage Foundation.
Nice. And that was that I'm not asking you for a number, but was it an oppressive number or was something they were able to do without you're just trying to cover the cost of the books and get them there. Right?
Yeah. So they they paid a certain amount, which was much less than retail. Mhmm. And then they covered the shipping. Awesome.
Let's get to it then. Let's get some people out there.
Yeah. And it will what's also helpful is that whenever I can sell whatever I sell, I'm able to then put into the next project. Yeah. So being able to surpass, like, the actual cost of it means that, you know, with $10,000 for each project, like, it can kinda go into the next one, which is really helpful. And so when they were did that, I was able to put the down payment on the illustrator for the next book.
This must be how you got on the podcast because I must have known enough because I I have a fairly I wouldn't call it a rule, but I don't usually talk to authors because it leads to many more authors reaching out. I don't know another way to put this exactly. Yeah. And I and I get put in a I get put in a weird situation. A, the podcast isn't a book club.
And b, that when they wanna do it on Facebook like, we don't let people sell their own stuff on on the Facebook group. It just it leads to a mass of people trying to do that. And then it leads to like, the the the page just gets overwhelmed with people trying to sell things, and then it loses its value for, you know, what it's there for. And so we have pretty strict rules about, like, self promotion, and it makes me feel terrible. I I honestly wish there was just a way to do it, people trust me.
Everyone listening right now just had an idea. I appreciate all your ideas. It doesn't work. Okay? Whatever your idea was, we thought of it.
It doesn't work. So but I but to get you on the podcast, I I I guess I must have known enough about your story to say yes. I don't know my I I don't remember my own life, so it's hard for me to say.
Yeah. No worries.
But I love your story. So, obviously, I loved it in the past too. It it just really is you have a really fascinating path. And if I'm if I'm being honest, like, the you you have a perspective on, like, the fragility of life that a lot of people don't have too.
Yeah. I think that's one of the strengths, really. Like, when we talk about resilience, you know, like, that's just what life is. And so we're talking kind of earlier on in the interview about like, I grew up with CF, so it's just part of who I was. Mhmm.
And but the diabetes actually hit really hard because I was like, I already have something. Like, why am I getting why am I getting something else?
Hi. I got minority. Thank you. This is probably this is probably for someone else.
Yep. Yep. And the same thing with, like, when my daughter was born, I always thought, like, you know, it was a big decision to have children with this unpredictability of life. Right? And I was like like, her thing to deal with was supposed to be me.
It's having something really serious. It wasn't supposed to be her own her own thing.
I see what you're saying. You're like, I was gonna have a kid, and her problem was gonna be my problem. And Yes. Then she got my problem and her problem.
Yep.
Yep. That does seem unfair. Does that make you I don't know your holdings, but does that make you less or more religious minded?
I'm I'm not religious.
Yeah. Did it take I have
a I have a really hard time with with that.
Yeah. I was just wondering if it moved you in one direction or you've just left you where you are.
Yeah. My my I was raised Catholic, but I've never really been connected to it. I I think it it creates a lot of it's my mom is more religious, and I think it really helps her and helps create, like, a foundation of I don't know so much about community, but just, like, hope.
Yeah. And
that Didn't do the same for me. It didn't do that for me. So
Yeah. Maybe maybe the most insulting thing anyone's ever said to me was, god gave ardent diabetes because they knew you'd be good at it. And I was like, I don't feel like you're selling it the way you think you are. But yeah. Yeah.
But if you only get what you can handle Yeah. That like, I know I can handle a lot. Like, I'm tired.
I I could handle a nap and a sit in the sun. How's that how's that vacate?
Yeah. Like, you wanna send me on a cruise? I can handle that.
Yeah.
Hey. I can't No more.
I can't.
No more diagnosis.
I can't send you on one, but I can recommend juice cruise 2027. Perfect. Which is booking right now at juiceboxpodcast.com/juicecruise.
Good luck.
Selling books, and working a room51:11
Thank you. You hate this part of it, the selling for the book, or do you enjoy this do you enjoy talking about it?
I'm actually really good at it. And which I think I do a better job, like, face to face than I do otherwise. Mhmm. But, like, we go to a craft fair, and my husband, when I'm like, oh, I'm gonna just, like, meander around. He's like, you need to come back.
I'm like, I cannot talk about your books the way that you can talk about your books. And and I'm like, I I wanna shop too. Yeah.
You have to, though. I did a book fair once. I was just telling somebody about this this last weekend. Why is it why was I telling them? Oh, we were at we were friends for life.
I was at the Sugarpixel booth of friends for life. Customtype1.com/juicebox. And I was just throwing all my links. And and I was and I was working with John at with Sugarpixel, and he made these really great comic books. And I would and I was just sort of this is gonna sound really strange, but I was just the pretty girl that leans on the car at the Sugarpixel booth, which I know is incredibly strange.
But trust me in that setting, works out pretty well. I'm a good I'm a I'm a good draw at the booth. And so we had done a talk together, and then I was spending the next two days with him at his booth. And I would take the comic books and just I'd grab some, and I'd walk around. And you're not not really allowed to give things out outside of your space.
So I would just kinda walk the space, make eye contact with people, chat with them, tell them about the comic books, give it to them, go get another one, do it again and again. And I was giving away, like, a lot of comic books, which was the goal. But there were plenty of other that people were giving away that people weren't walking around with. And someone asked me, like, what do you like, how'd you, like, you know, how'd you figure out what to do here in this situation? I said, I went to a book fair one time in Collingswood, New Jersey.
It's a really, really huge popular book fair that happens, like an author fair once a once a year. And there were just countless hundreds of people there who had written books. And I wasn't there for five minutes when I realized if I stand behind this table, no one's no one's buying one of these books. And I just grabbed a handful of them. I got in front of the table, I started chatting with people.
And at lunchtime, I was out of books, and I left. And everyone else looked at me like they wanted to kill me.
Yeah.
And and what I I told the guy next to me because he's like, how did you do that? I said, you're gonna have to talk to these people. They don't they don't know they they're interested in your book. And there's too many of them here. You're they're overwhelmed.
They're just they're looking at covers. It's
I think also authors or people that are traditionally
Mhmm.
Like, drawn to writing and creating are a little bit tend to be more introverted.
Yes. Yeah.
And to me, like, I've never considered myself to be a great writer. Like, I I'm an I'm an advocate, you know, more so.
Yeah.
And so, like, the the the book is, like, the vehicle for helping. It's not like, that isn't the writing piece is not my passion.
But you know how to do it well and in a way that'll help people and support them, they'll enjoy that kind of thing.
Yeah. And to do it in a way, like, with other people that are experts in their own fields. You know? Like, I don't I think a lot of times when we think, like, self published, we don't we don't see the quality come through. And that's why I think it's really important, especially when you're focusing on topics that don't have a lot out there, to do it really well.
Mhmm.
And that cost it costs money
Yeah.
To do it really well, and it it takes experts. So, like, I do an I invest in professional editing Awesome. Many layers of it and professional book design and a professional illustrator, which I think makes a big difference.
Yeah. No. For sure. And that's that's really fantastic. Yeah.
No. I I had the same experience when I was doing some of those interviews that I set up for myself. I think it was after the NPR one that I did. The the publisher contacted me, they was like, that was really good. And I said, what was?
And they're like, your interview. And I was like, thank you. And I said, why are you surprised? And they said, oh, most authors are terrible. It's terrible.
And and a lot of people don't don't stand up. They don't talk to people.
Yeah. Not me. I'm like, I got all these books. I gotta get rid of them. Yeah.
Let's go. And also, what I write it for if I'm not gonna tell you about it? Like, it's that weird idea that they're gonna come find you that throws
you off.
You know? So, anyway, I think it's great that you're doing all this and that you're out there, you know, craft fairs and wherever else you can figure out to do it.
Yeah. No. And it's hard it's hard. Right? Because I also have two kids that are four and five right now.
So there's only so much space.
Yeah. No. I don't know how you're doing any of this, to be perfectly honest with you. Do you know? Are are you some days like
doing it? I think it's, like, every spare minute of, like, when they're asleep.
When they're asleep?
Pretty much. And they're not sleep enough. I wrote
a I wrote a blog post at 04:45AM today.
Just Perfect. Yeah. I wanted to share too that I am working on a sequel to My Body Beeps.
Okay.
And I don't have a Kickstarter or anything yet, but I probably will need one unless sponsor wants to reach out to me. But I am setting it at camp, going to diabetes camp. Mhmm. And that the idea about kind of how wonderful it can be to connect with others that also share some of your lived experience.
I happen to know that the ADA is keen on talking about diabetes camp right now. Oh. You should reach out to them.
Okay. Well, if there's anyone in particular that you think I should talk to, please let me know.
Maybe I would know a person. Hold on
second. I can send you a picture of the draft cover. It's really cute.
Stop. I would tell you this. A, definitely do that. Send it to me. And b, this whole thing is contingent on this person recontacting me the way they said they were going to after I just met them in person.
But I was approached if you're by the way, they said they listened. So, hey, ADA. I was approached by somebody over there who said that we wanted to talk about camp stuff. Why don't you contact me? There.
Okay?
Yeah. No. What I what I did with the donated books from the first campaign for My Buddy Beeps was I donated them to different camps so that they could kinda each have one, like, in the nurse's office at camp, things like that. And I asked if they would wanna if people would wanna do be, like, beta readers for the the second, which I'm not ready yet to, like, send that out, but I'm excited to partner with as many people as possible.
Yeah.
And one of my clients who has type one and is currently at camp right now is helping me with story, which has been a really nice therapeutic piece too, like, to use in therapy. But I'm really excited about it. And if you remember kind of from the beginning of our talk today, I wasn't able to go to camp because I wasn't able to
You're gonna get a germ or a cough.
Completely close to other people. And that is something that people don't with type one diabetes, that is not something you have to worry about. So I think it's just such a wonderful opportunity to connect with others and
Well, let me
share, you know, share your challenges and
Yeah.
Understanding and celebrate each other's strengths.
A camp book, and an idea58:27
Can I can I I'm gonna let you go in a second so you can go back to your life, but let me float my idea?
Yeah.
Why would not why wouldn't we be able to get multiple camps and then just change one page of the book to reflect the book being about their camp?
Yeah. We absolutely could. Or put, like, at the well, the only issue would be the print runs.
Yeah. But
then Like, it depends on how many people ordered. So
Then the the amount they would need to give to you would be for the run plus the act the different page in the print. Yeah. That's very doable, I would think.
I I one of my ideas is to have community participation to help design. Like, if it remains a fictional camp, to have kids with type one design, like, the T shirt and the logo
Mhmm.
And Mhmm. Kind of crowdsource some of the creative bits. But I think that could work kind of partnering with different camps as well.
I'm saying, like, why couldn't, like like, the Clara Barton camp do one? Like, why couldn't
Oh, yeah.
Like, Sweeney do it? Why couldn't ADA do it? Like, why couldn't a number of them do it? Then they'd all have the book if they like the book. Let let's say that.
And and then they could give them away at camp to the kids that are coming.
Yeah. Absolutely.
That makes a lot of sense to me.
Alright. That's what I did with my the first project. I partnered with the Mobius Syndrome Foundation, and they helped sponsor some of the costs. And then I sent them hundreds and hundreds of books, and now they they include that with their their packages to families too.
Okay. Alright. I fixed the whole problem. We just need somebody to reach out.
We just we just need some sponsors so that I can do what I wanna do, which is just give things away.
Yeah. No kidding. How how, I'll ask you this when we're done recording. Alright. You guys should reach out to Kate if you're interested in this.
Go look at her other books and decide what you think, and then reach out to her at what was that email address again?
Acorncottagepress@gmail or on insta@acornunderscorecottageunderscorepress.
Kate, thank you for doing this. I really appreciate it.
Of course.
It's awesome. Hold on one second. I wanna ask you another question. Okay. I'm gonna hit stop.
Heck of an episode today, wouldn't you say? Let's thank Dexcom and the Omnipod five for sponsoring. That's right, my friends. We were sponsored today by the Dexcom g seven. Dexcom.com/juicebox.
Head over there right now. Look into that fifteen day Dexcom g seven. Fifteen days a long time. It's like half a month. Don't check my math, but I'm pretty sure I'm right.
And let's also thank the Omnipod five. My goodness gracious. Omnipod five tubeless. That beautiful algorithm's updated now with that new 100 target. Get in there.
Find out more about it. Omnipod.com/juicebox. You want some tubeless insulin pumping? Yeah. You do.
By any chance, have you tried the small sip series? It's curated takeaways from the juice box podcast voted on by listeners as the most helpful insights for managing their diabetes. These bite sized pieces of wisdom cover essential topics like insulin timing, carb management, and balancing highs and lows, making it easier for you to incorporate real life strategies into your daily routine. Take a deep dive, take a sip, and discover what our community finds most valuable on the journey to better diabetes management. For more information on small sips, go to juiceboxpodcast.com and then go oh, actually, we changed the website.
Let me see. Go to juiceboxpodcast.com. And from there, there's these two little lines on the right side top. That's the menu. Then click that, then click series, then there's pro there's small sips right there, pro tips top, all beginnings, bolus four, asks that.
There's a lot of them there. There's actually a little search there too. Could you just type small sips into the search? Oh, wow. That search works great.
Look at that. And then you could go right to, like, all results for small sips. Oh, and that takes you to the FAQ. You should check out the FAQ page too. I think that's juiceboxpodcast.com/jbfaq.
Seriously, that thing's amazing. Actually, the whole website is I mean, have you, like, seen it? You should you should go check out the website. The website rocks. It is a potpourri, a never ending cornucopia of support for you and your diabetes journey.
That's right. It really is. What else we got over here? Oh, I don't like the way that works. I'm gonna fix that.
Note to self. Change the change the masthead on the frequently asked questions page. Yeah. I don't like that. Fix that.
Oh, Claude. Oh, hell. I forgot to say thank you. Thank you so much for listening. I'll be back again very, very soon.
What is that noise? Stop it. Stop. Can you hear that? It's my chameleon squeaking.
Are you squeaking? What are you rubbing the branch against the don't tell people I have reptiles. They'll think I'm weird. Thanks so much for listening. I'll be back very soon with another episode of the juice box podcast.
Look at me. Get all deep in there with another episode of the juice box podcast. You can hear it. What was that? Oh, I'm getting alarms and alerts on my phone.
I was gonna get real deep and tell you about the juice box podcast.
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