#1833 Stale Doughnuts

Kathy shares her late-in-life Type 1 diabetes misdiagnosis , navigating Graves' disease and Thyroid Eye Disease , the mental toll of visible symptoms , and the vital importance of medical self-advocacy.

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Omnipod
DexcomG7 15 Day Sensor
Dexcom
Save 20%Save 20% with offer code: JUICEBOX
Cozy Earth
US MEDGet your Diabetes Supplies
US MED
ContourEasy to Use and Highly Accurate
Contour Next
MiniMedMake everyday a better day
Minimed
TandemControl-IQ+ with AutoBolus
Tandem
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Key Takeaways

  • Adult-Onset Misdiagnosis is Common: Adults presenting with symptoms like rapid weight loss are frequently misdiagnosed with Type 2 diabetes, which can lead to life-threatening complications like DKA before the correct Type 1 diagnosis is made.
  • Autoimmune Conditions Often Cluster: A Type 1 diagnosis can be accompanied by other autoimmune issues, such as Graves' disease and Thyroid Eye Disease, requiring you to actively monitor symptoms like racing heart rates and extreme fatigue.
  • Hormones Must "Play Nice" Together: Insulin, cortisol, and thyroid hormones all interact. A disruption in one (like hyperthyroidism) can drastically alter your insulin needs and cardiovascular responses.
  • Self-Advocacy in Hospitals is Critical: When undergoing surgery or hospital care, patients with Type 1 must vocalize their insulin needs, especially regarding suspended pumps and fasting, as institutional protocols are often inadequate for T1D management.
  • The Mental Toll of Visible Symptoms: Managing public lows and dealing with visible physical changes (like proptosis from Thyroid Eye Disease) can cause severe self-consciousness, compounding the daily mental burden of chronic illness.
FULL EPISODE TRANSCRIPT

Welcome & Introductions

Scott Benner (0:00)

Here we are back together again, friends, for another episode of the Juice Box podcast.

Cathy (0:15)

Hi. I'm Kathy. I have type one diabetes diagnosed at a later age, thyroid disease, specifically Graves' disease, and thyroid eye disease.

Scott Benner (0:28)

My grand rounds series was designed by listeners to tell doctors what they need, and it also helps you to understand what to ask for. There's a mental wellness series that addresses the emotional side of diabetes and practical ways to stay balanced. And when we talk about GLP medications, well, we'll break down what they are, how they may help you, and if they fit into your diabetes management plan. What do these three things have in common? They're all available at juiceboxpodcast.com up in the menu.

Scott Benner (0:55)

I know it can be hard to find these things in a podcast app, so we've collected them all for you at juiceboxpodcast.com. While you're listening, please remember that nothing you hear on the juice box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan or becoming bold with insulin.

Scott Benner (1:30)

Today's podcast is sponsored by US Med, usmed.com/juicebox. You can get your diabetes supplies from the same place that we do, and I'm talking about Dexcom, Libre, Omnipod, Tandem, and so much more. Usmed.com/juicebox or call (888) 721-1514. Today's episode is also sponsored by Medtronic Diabetes, who is making life with diabetes easier with the MiniMed seven eighty g system and their new sensor options, which include the Instinct sensor made by Abbott.

Scott Benner (2:07)

Would you like to unleash the full potential of the MiniMed seven eighty g system? You can do that at my link, medtronicdiabetes.com/juicebox. The podcast is also sponsored today by the Eversense three sixty five. The Eversense three sixty five has exceptional accuracy over one year and is the most accurate CGM in the low range that you can get. Ever since cgm.com/juicebox.

A Misdiagnosed Adult-Onset Type 1

Cathy (2:32)

Hi. I'm Kathy. I have type one diabetes diagnosed at a later age. Thyroid disease, specifically Graves' disease, and thyroid eye disease. I guess I am identifying myself by my diagnosis, but lots of other fun, cool things too.

Scott Benner (2:49)

You were diagnosed later in life. How old?

Cathy (2:52)

I was diagnosed at about 50 years old.

Scott Benner (2:55)

How old would you tell me how old you are now?

Cathy (2:57)

I am 62 now.

Scott Benner (2:59)

Okay. So you've had it for a dozen years. What was the diagnosis like? Do you recall?

Cathy (3:05)

Oh, yeah. I sure do. I was the classic misdiagnosed type two. I had recently taken a new job and moved three states away, of course, so no family, no support in the area. Had all the classic things. I lost, like, 80 pounds in, I don't know, two or three months.

Cathy (3:27)

Just all those things. And, of course, in moving a lot, seeing a bunch of different doctors, I didn't have any consistency there and on and off with insulin. And with changing jobs, my insurance changed as well. I kinda had a perfect storm in my diagnosis story that I thought I was type two taking metformin and didn't know about deductibles. The insurance I had previously was not an issue.

Cathy (3:56)

I would, you know, go to the pharmacy, get insulin, everything's fine, but didn't realize I was being reimbursed for insulin. So I'd go in and spend, you know, at that time, $1,200 for a month's insulin supply.

Scott Benner (4:10)

Oh.

Cathy (4:10)

So I thought, well, I'll stop taking insulin for now. Just do the metformin and, you know, eat very low carb.

Scott Benner (4:17)

That didn't seem problematic to you because you thought you had type two diabetes.

Cathy (4:21)

Right. Right. And that that's doable and ended up in the emergency room, crawling to the emergency room in ICU in a state two states away. I was in ICU for a week. The doctor told me he was very sick, I had heart issues, and it was a pretty serious situation, but it wasn't even that I was diagnosed as type one at that point.

Scott Benner (4:47)

Well, we're gonna wait. Crawling to the ER didn't get you a diagnosis? Yeah. Oh my gosh. Really? Okay. Alright. So let me make sure I understand. Like, as you're moving away, your doctors are are getting kinda split up, you're just seeing people to see people. So there's no consistency.

Scott Benner (5:04)

You get the wrong diagnosis. The 80 pound weight loss, I have to ask you, that didn't freak you out or did it? And you just like, how did you reconcile that in your mind when it was happening to you?

Cathy (5:15)

I thought it was pretty cool.

Scott Benner (5:18)

Kathy's like, what are you talking about?

Cathy (5:20)

I'm just trying I I think that's pretty common thing that yeah. Look at me. You know, I'm wearing a size two and, you know, I know that's just just wrong. But

Scott Benner (5:30)

I'd like to say out loud probably, if your body is rapidly changing drastically, matter which direction it's going in, you should probably wonder why that's happening. That's for everybody, not just for you, Cathay. There should be a reasoning behind it that you understand. You're in the hospital, but not getting a diagnosis still.

Cathy (5:48)

Right. Seeing a diabetic educator, and mine was slow coming. You know, I didn't immediately need lots of insulin or for a long time. You know, I could manage that. Finally, I went to my doctor and said, you know, hey.

Cathy (6:03)

I'm doing everything. I'm doing low carb. I can't get a a one c under seven. You know? And he's he looked at me, he's like, has anybody ever tested for type one?

Cathy (6:12)

Like, yeah. Okay. Right? So we did that.

Scott Benner (6:17)

How long into the journey was where somebody finally asked it to test you?

Cathy (6:23)

I think it was at least a couple years.

Scott Benner (6:25)

No kidding. Okay.

Cathy (6:26)

Like I said, I was slow onset using insulin on and off. It just came to a crisis. I kinda had a a perfect storm, came into a crisis, and, of course, I ended up in the hospital. And then I went started to ask questions then. But I I really didn't know. You know? I thought I was moving along fine and a lot of stressors in my life. You know? New job, moving out to a different state, not a lot of people around me that could see, you know, hey. What's what's going on with you, Kathy?

Cathy (6:58)

Yeah. You know?

Scott Benner (6:59)

Yeah. People you didn't look different to people because you just met them.

Graves' Disease & Heart Concerns

Scott Benner (7:03)

What about your heart, Kathy? Like, you said they said heart problems at first. Did that actually end up being true?

Cathy (7:09)

Well, actually, at in DKA in the hospital in Indiana, they did a stress test. I remember a couple of times, you know, there's nurses in the hallway, and I'm setting off the beepers in the machines. They did a stress test or a chemical stress test, and I failed that. Okay. So went to a heart hospital after I got out of ICU, and they did the not remembering the name right now, but when they stick a tube down your vein to check things

Scott Benner (7:41)

Oh, terrible.

Cathy (7:42)

Past that. They didn't they didn't see any blockages, and there was no ongoing issues there.

Scott Benner (7:48)

Oh, they give you, like, a heart catheter?

Cathy (7:51)

Right. That's it.

Scott Benner (7:52)

And then looked around, and they didn't see any. Okay. Good. So so that the heart that they saw in that moment, that was from the DKA, you think?

Cathy (7:59)

I think so.

Scott Benner (8:00)

Okay. So it's not an ongoing issue?

Cathy (8:02)

No. It it hasn't. Well, moving up, I have, another my kind of song and dance right now is I have Graves' disease hyperthyroid. Mhmm. And that ended up in another emergency room visit.

Scott Benner (8:17)

How far into your type one diabetes does the Graves come up? How far into your initial diagnosis? So when you first thought you had type two twelve years ago, how much longer was it after that until you got the Graves' diagnosis?

Cathy (8:32)

Two years.

Scott Benner (8:32)

Two years. Okay. So right around the time you're getting the type one diagnosis, you're getting the Graves' as well.

Cathy (8:37)

What about years ago. 2024.

Scott Benner (8:39)

Oh, two years ago. I'm sorry. Okay.

Cathy (8:41)

Right. Yes. Sorry. A little trouble hearing everything.

Scott Benner (8:44)

Oh, I'm so sorry. I'll I'll, I'll yell.

Cathy (8:50)

Won't be the last time somebody's gonna yell at me today. So that's

Scott Benner (8:53)

Oh, I'm sorry. Why? What do you do for a living?

Cathy (8:55)

Oh, I just have some meetings today. I, work for the Chamber of Commerce area development type of things, lots of small town politics and and whatnot.

Scott Benner (9:06)

Kathy's like, my whole day is people yelling at me. It's fine. Tell me about the graves. Go ahead.

Cathy (9:11)

Yeah. That came again in a movie, and I guess I need to stay put. The company I work for was sold, and so I decided to move back to my home state because, you know, couple years from retirement, I'll just take the paying the bills type of job and and get to retirement. All is good. But I was just really, the moving process, just really tired and stressed out and heart racing.

Cathy (9:40)

The heart rate, like, you know, over a 100 and blood pressure, you know, one ninety over something something. I don't remember at this point, but just always exhausted. I could barely walk across the room without needing to sit down. Know? And, of course, you go to the doctors for that, and they think, well, you're diabetic so that, you know, that's the answer for everything.

Cathy (10:05)

So didn't really get in a read on that until with Graves, for me, lost a little bit of weight and couldn't eat. I literally would go days without eating, and I was on a pump at that point, so it wasn't you know, my my insulin would suspend all day because I literally wasn't eating or drinking anything. So ended up on the move halfway to my new place, ended up in the emergency room, DKA, mild DKA. Luckily, there was a resident there that was pretty persistent, and and I asked too, you know, what what's the deal with the heart rate? You know, why why is that so hard?

Cathy (10:44)

And they did some testing with the antibiotic testing, figured out I had Graves' disease as well, and that was, what was causing the heart issues again.

Scott Benner (10:53)

All those symptoms go away how quickly when you get medicated? Like, how long does it take for the medication to pull you back to a better place?

Cathy (11:01)

I went to primary initially because, of course, you know, like everywhere, an endocrinologist can be kinda hard to get to. And, of course, I'm moving from one state to another, so out of that. But they prescribed beta blocker metoprolol

Scott Benner (11:17)

Mhmm.

Cathy (11:17)

Right away, and that helped tremendously.

Scott Benner (11:20)

Okay.

Cathy (11:21)

So got to an endocrinologist and put on methimazole. And I would say within a couple months, I was in much better shape. The weakness and the fatigue lasted a while, but pretty quickly, I could I could function again.

Scott Benner (11:37)

Okay.

Cathy (11:38)

And that's kind of where I ended up in. I live real close to research hospital for an hour and a half away, so got into clinical trial for another drug that's a treatment for or possible treatment for Grave is impossible treatment for thyroid eye disease as well and feeling better pretty quickly. My doctor is pretty conservative with adjustments to medication, but I did find out on that journey too that type one diabetes, the thyroid issues, and, at one point was concerned about cortisol as well that they need to play nice together. And it's kind of hard to manage all this that I went through a period when we're concerned about cortisol that I dropped my insulin use dramatically, and my heart rate would go down to, like, 80 over 40.

Scott Benner (12:33)

Do you speak to other people in my Facebook group who have similar issues to you? Because I I there's, like, a little group of them talking about, like, cortisol and Graves' and stuff like that. But have you found those people?

Cathy (12:44)

I have found those people and talking back and forth and yes. I think it was a comment I saw on the Facebook page that somebody described it as bumper bowling. I can't think of the exact word, but you've got insulin hormone over here, cortisol hormone, and thyroid hormones that kinda gotta get that ball all the way down and bump off each other. I didn't realize until talking to people like that, and that's that's the huge value of that that it all kinda has to work together.

Thyroid Eye Disease & Double Vision

Scott Benner (13:17)

Yeah. Thyroid eye disease, do you get that diagnosis at the same time as the Graves', or does that come more recently?

Cathy (13:24)

No. And that's that's really a word I wanna put out. That was the clinical trial I was in as well that

Scott Benner (13:32)

Figured that out.

Cathy (13:33)

In a blind study at first and was a nonresponder to that. Then I put an extension trial where it was open label that I knew I was taking the drug and not responding. In fact, the, with the thyroid eye disease, what they look at to judge is some clinical signs, eye redness, dry eyes, and actually, take a measurement of how much your eyes are, can't think of the medical term, but, bulging. Mhmm. Mine was pretty significant.

Cathy (14:05)

A normal white woman average, that measurement's gonna be not over 20. Mine was 28 and 29, so it's fairly significant.

Scott Benner (14:16)

Is it called proptosis?

Cathy (14:18)

That's it. Exactly. Yes.

Scott Benner (14:21)

And so your measurement was greater, and I am interested, though. So you got into this study. How valuable has the study been for you?

Scott Benner (14:31)

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Scott Benner (15:05)

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Scott Benner (15:33)

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Cathy (16:43)

As far as taking the drug, it didn't didn't help, but it got me the right connections. The research hospital I go to, they're very into collaboration

Scott Benner (16:54)

Mhmm.

Cathy (16:54)

That the endocrinologist is talking to the ophthalmologist, is talking to the surgeon. I ended up well, let me back up just a minute with a just try that steady drug, and then there's, TEPEZZA that they offered me to try. And I I had some concerns about that. I'm I'm not bashing the drug or anything. It's just for me, it didn't sound like it would be a good idea.

Cathy (17:20)

So I ended up mid December getting bilateral orbital decompression surgery. It ended up being a ten hour surgery. Mhmm. There's a team of surgeons that will go through your sinus and another team that will remove the fat and move the muscles around your eye. Okay.

Cathy (17:40)

It was fairly intensive, but decided to go not with more drugs and backing up again too. It's a hard thing to diagnose. What they were having trouble with in the trial is that they wanted people that have been less than a year diagnosed with thyroid eye disease, and doctors didn't wreck don't recognize it. They you know, you go to your eye doctor and well, you have dry eyes.

Scott Benner (18:05)

Mhmm.

Cathy (18:06)

So You don't necessarily get the thyroid eye disease diagnosis. Just they'll say, oh, you have dry eyes. You have redness. Use drops, stuff like that.

Scott Benner (18:14)

So we can go undiagnosed for quite some time.

Cathy (18:17)

Right.

Scott Benner (18:18)

Yeah. Do you think that happened to you?

Cathy (18:21)

I, of course, get diabetic eye exams every year and went to that doctor first because my it was very red above my eyes and swollen. And they, of course, sit well, they said dry eyes, you know, you're fine. So there's there's no test that I'm aware of. It's just really clinical. And if you have Graves, I think it's forty percent.

Cathy (18:48)

Maybe I'm just grabbing a number out of my my head, but a lot of people with Graves' is pretty directly related to that.

Scott Benner (18:55)

I see. Do you have any of the serious side effects of it? Do you have damage or vision loss, anything like that?

Cathy (19:02)

Well, right now, after surgery, I have double vision pretty badly and maybe looking at it in a few months, once kind of the healing has died down, looking at some muscle surgery, and that's not as intense at all, but to be able to move around my eyes. It's fairly rare with thyroid eye disease, vision loss. In fact, my vision is twenty twenty, twenty thirty. But the danger is is it starts messing with your optic nerve, which I'm good with so far, knock on wood, with that. But with the dry eye and physically not being able to shut your eyelid, you can get really bad dry eyes.

Cathy (19:46)

And I have some signs of that that you know, some spotting on my eyes that they can see the dry eyes, and that's the danger with, vision loss.

Scott Benner (19:56)

Okay.

Cathy (19:56)

It can literally burn your cornea because you can't close your eyes.

Scott Benner (20:01)

What do you do for that? Do you, like, physically have to remember I'm I'm gonna say something silly, but do you do it with your hands, or do you, like, put drops in, or how do you manage that?

Scott Benner (20:12)

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Scott Benner (20:47)

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Cathy (21:16)

I use drops. I use gels at night, and there are people that I don't have to do it, but will literally tape their eyes shut at night. Next month, I'm back to an ophthalmologist looking at maybe plugs in my tear ducts so the the tears stay on my eyes.

The Mental Toll & Stale Donuts

Scott Benner (21:39)

Okay. My gosh. Kathy, are you alone? Do you live by yourself?

Cathy (21:44)

Yeah. Yeah. I am.

Scott Benner (21:45)

Is this I mean, I I'm sorry to ask, but is this all very frightening? How do you find the kinda mental side of your process to be?

Cathy (21:54)

You know what was hard about thyroid eye disease? I had very significant the bulging on my eyes didn't bother me that much. It didn't. But above my eyes, on that eyelid were very pronounced. So like I said, you know, I have a very public job, and I'm out and out and about all day.

Cathy (22:15)

You know, we have in in the boardroom, there's there's mirror a mirrored section on the boardroom, you know, having a great meeting and turn around and and look at my eyes that are look swollen and, you know, something's wrong with something's wrong with her. And it's it it does take a toll, and I find that too. I just had a you know, with a type one, I I wear a pump, but well, I've had a few low situations recently where, you know, I'm sitting in the grocery store eating stale doughnuts that I haven't paid for, and I'm not concerned so much that I'm having a low it's like, are people watching me and and thinking, you know, what's what's wrong with her?

Scott Benner (22:54)

Yeah.

Cathy (22:55)

You know, that's that's the mental toll for me that

Scott Benner (22:58)

Feeling self conscious is what gets you.

Cathy (23:01)

Yeah.

Scott Benner (23:01)

Yeah.

Cathy (23:01)

Yeah. And, of course, when, you know, into a low, your your brain's not functioning, and I've literally stood in grocery lines look deciding which flavor of juice, you know, I'd like and and dropping below 50 and yeah.

Scott Benner (23:15)

Yeah. Well, I have to tell you, I'm definitely calling your episode stale doughnuts. A million percent.

Cathy (23:22)

I'm glad I could help you with that. I I

Scott Benner (23:24)

You were worried?

Cathy (23:26)

I was worried what it was gonna be. Yeah.

Scott Benner (23:29)

There are times I get done, and I leave a voice note for myself and for Rob at the end, and I just I'm just babbling into the note. I'm like, I don't know what to call this. This nothing came up during this one. I don't know what to say. But no.

Scott Benner (23:41)

This if only you would have said you were sitting on the floor eating stale donuts, I would have called it stale floor donuts. But we're just gonna go with stale donuts. And then I just wanted to ask because, you know, you moved a few times and you did a really good job explaining how that feels. You were very descriptive in just a couple of words, like being in a meeting, doing your job, knowing you're doing a great job, and then looking over, seeing yourself, and then having that moment where you think, oh, gosh. Is everyone looking at me and thinking what's wrong with her?

Scott Benner (24:07)

And even at your I mean, you're 62, and that doesn't go away, I guess. You know? Mhmm. Do you talk to anybody about it? Your friends or people you can chat with?

Scott Benner (24:17)

Do you see a therapist? Anything like that?

Cathy (24:19)

No. I haven't. I don't know. With this whole process, I'm I'm kind of always hoping, well, this will resolve. This thing will get better.

Cathy (24:29)

You know what I mean? That that next doctor appointment, that's that's gonna be the answer, and this will get better. And I don't with that clinical drop trial when they were offering me different drugs when the first didn't work, You know, that was part of my decision making process too that the TEPEZZA is is an eight month process.

Scott Benner (24:50)

Mhmm.

Cathy (24:51)

That you know, surgery choice was pretty pretty radical, but I I couldn't hope for eight more months that this was gonna resolve because it's it's it's pretty traumatic. I mean, it's not just that you have a medical problem. It's yeah.

Scott Benner (25:10)

Keep keep talking. It's not just they have a medical problem. It's what?

Cathy (25:13)

I mean, it it becomes your whole being. That's you know, I like to push things push things aside. You know? Love my insulin pump. I rarely have to think about it.

Cathy (25:23)

You know? I'm I'm not good at confronting it. I just assume it not be there. And just my dad used to, tease me that I was just like my mom, and I'm fine.

Scott Benner (25:35)

Oh, you just be like, everything's fine. Everything's fine. Everything and

Cathy (25:37)

I'm fine. I'm fine. Don't don't worry about me.

Scott Benner (25:41)

Do you think it's that you don't want people to worry about you, or do you think that you're trying to just ignore things and hope they they that you get back to some semblance of normalcy that you're looking for?

Cathy (25:51)

I would say I don't want people to work worry about me, but I also I just wanna live a normal life. I think about times where I do a lot of event planning in my work, and I love live music, go out to concerts. I remember a situation where I was at a concert and kinda scouting out all the food trucks, you know, where what do I gotta time my insulin and and get food and get back? And and I started to drop low, and I'm sitting in the middle of a crowd. Just my my pump's alarming, and I'm like, why?

Cathy (26:27)

Yeah. Why can't I just be normal? You know? Go about the day, go to the food truck just and not worry about it.

Scott Benner (26:34)

Do you feel like why me or just

Cathy (26:38)

I don't know if I feel so much why me, but I wanna live my life the way I wanna live my life, and it doesn't always doesn't always jive.

Scott Benner (26:49)

Yeah. I didn't think we were gonna have such a deep conversation at 8AM. It's making me upset. I'm getting I'm getting sad. I

Cathy (26:57)

know. People are gonna be in my office in about forty five minutes, and if I'm in tears

Scott Benner (27:02)

Yeah. She'd be like, why is she crying? She's like, she was on a podcast. I don't know. She said something about the guy.

Scott Benner (27:07)

He asked about her feelings. I mean, I'm trying to think through your life and, you know, the best I can from this position. And when you have situations like that that are not resolvable or something that like like you said, like the pump. Like, you know, hey. I have type one diabetes, but this pump thing kinda takes care of it most of the times.

Scott Benner (27:27)

Like, you know, I can kinda not think about that as much. But the Graves' thing is is tough, and I don't know that people, you know, would understand that if you if you didn't spend the time right now talking about it. So I really appreciate it.

Cathy (27:39)

Graves' has kinda become my my standout. When I see other people posting about things, I'm like, get your thyroid checked to get your I looked back at my medical records, and I've had an endocrinologist for, you know, how many years and how many times I've actually had a thyroid checked. Zip.

Scott Benner (27:59)

Yeah. I feel like that's my secondary cause with the podcast. Like, I I try to ask everybody when they have symptoms like that. Like, have you had your thyroid checked? You know?

Scott Benner (28:08)

And then everyone always says, oh, yeah. It was fine. I say, well, you know, can you get the TSH number? Because it you know, there's a possibility that the doctor saw a number that they think of as in range, but, you know, might be indicative of of your thyroid having an issue no matter whether it's in range or not. You give that whole explanation.

Scott Benner (28:26)

I feel like I've said it a million times, but I feel like sometimes when I say it to people who listen are probably like, oh my god. He's talking about their thyroid again. But it just gets missed for so many people, and it has really serious impacts on your life. And, you know, one little pill once a day. You know what I mean?

Scott Benner (28:42)

And it just I just wish people knew about it more and more. So I appreciate you talking about it bringing it up.

Navigating Surgery & Hospital Care

Scott Benner (28:47)

How did how's the diabetes going? Like, so once you got the diagnosis and, you know, they told you you had type one, was it injections? Like, did they give you a pens?

Scott Benner (28:56)

Did you get on a pump right away? What was that process like?

Cathy (28:59)

I was no. Not not a pump for years later. Started out MDI and had a CGM. That was amazing to me even to have a CGM because I my blood sugar was just all over the place. So I was didn't have any awareness of that and how often I was going low because I was just randomly taking insulin.

Cathy (29:25)

You know? Oh.

Scott Benner (29:27)

What was random about it? Why did you not have a plan?

Cathy (29:30)

I think the doctor didn't have a plan. Started out sliding scale and, of course, you know, they're thinking I was type two, so maybe the insulin wasn't a wasn't a big deal. There didn't need to be a plan to just take a little when you're eating, you know, nothing about pre bolusing, you know, up and down with that. Then went to ended up with a a much better diabetic educator, so got on board once I got the type one diagnosis. Went to a pump three years ago, so it hasn't been terribly long.

Scott Benner (30:07)

Okay.

Cathy (30:08)

But my doctors push technology. She had a rep in the office there, so it was pretty easy. And, she was she was all about Medtronic, So that's what we went with.

Scott Benner (30:20)

Are you on the seven eighty g?

Cathy (30:23)

Yes.

Scott Benner (30:23)

You are. And How do you like that?

Cathy (30:26)

I like it a lot. Recently did the update to get the instinct sensors. Those are being shipped. So the switching over to that, there was, when I had the eye surgery, my the anesthesiologist, I talked to him about it. I'm like, well, I've got a pump on, and he's like, no big deal.

Cathy (30:48)

And I looked at the records afterwards, and it was like a perfect line. So that did really well for me.

Scott Benner (30:54)

How long was the surgery?

Cathy (30:56)

Ten hours.

Scott Benner (30:57)

Ten you were in a ten hour surgery. Seven eighty g kept you stable the entire time in there.

Cathy (31:02)

Yes. I had one slight low, but otherwise, it was, one thirty four the entire time.

Scott Benner (31:09)

A 134 the entire time at ten hour surgery. What was the slight low? What did it go down to?

Cathy (31:14)

There was a bleep, and I'm kind of wondering it's a known thing with the seven eighty g with Tylenol.

Scott Benner (31:21)

Okay.

Cathy (31:22)

If something but it was, you know, it it was dealt with. I'm not sure. It was kinda mid surgery why it went low. But the anesthesiologist, was very comfortable with. He seemed very knowledgeable of my history.

Cathy (31:36)

And

Scott Benner (31:36)

Well, that's awesome.

Cathy (31:37)

So yeah. But I did figure out after surgery, I see a lot of when I'm kinda browsing the the Facebook, people talk about, you know, being able to use their pump during surgery and, you know, what that looks like and how to convince people. My message to folks is that take a look at what your aftercare looks like. I couldn't after surgery, I mean, my eyes were just very swollen. I couldn't even see a pump.

Cathy (32:08)

Mhmm. And the ENT surgeon was kinda imagining the aftercare rather than endocrinology to my awareness. You know, I haven't dig deep into it. Who knows what goes on behind the scenes? But he was like, well, you can you know, it was 07:00 on a Friday night when I got out of surgery, and they're gonna send me to the hotel.

Cathy (32:31)

I'm like, no. That's not safe. So even even in that situation, I'm comfortable advocating for myself that we're we're not doing this. Yeah. But, yeah, I had a kind of a weird situation with that surgery.

Cathy (32:47)

My support person got COVID, so switched it up fast so that wasn't somebody that was really familiar with how to how to manage that. But, yeah, in hospital situations before, they're very diligent about, you know, not leaving until we you could show us, you know, how to use that pump.

Scott Benner (33:05)

Right. Right.

Cathy (33:06)

But that

Scott Benner (33:06)

Kathy, a second. You had a support person set up for after the surgery who understood your pump and everything because you just had eye surgery, and then that person got COVID?

Cathy (33:15)

Correct.

Scott Benner (33:16)

Oh my gosh. Did you come on. That had to that had to kick you in. Right? Were you like, come on.

Scott Benner (33:21)

Really?

Cathy (33:23)

Oh, absolutely.

Scott Benner (33:24)

I'm like No kidding.

Cathy (33:25)

It was my sister, and she called, and she was so apologetic. And I'm like, it's okay. The deal is is like I said, it was a research hospital, so those surgeons were, like, top of the top. You know? You don't wanna lose that appointment unless absolutely necessary.

Cathy (33:42)

I'd never get back in.

Scott Benner (33:43)

Yeah.

Cathy (33:44)

I took it. But yeah. That's crazy. My fault or partially responsible not asking more questions about what aftercare was gonna look like.

Scott Benner (33:53)

Yeah. I understand. Hey. You said you're getting the Instinct sensor. What sensor were you using previously?

Scott Benner (34:00)

The one that has to recharge?

Cathy (34:02)

Yes.

Scott Benner (34:03)

Oh, and so you're making the leap to the new more modern one with your Medtronic. Are you excited about that?

Cathy (34:08)

I am. Because I used to, I used the Libre or CGM the first time, and I really like that. I like that you know, I'm always on the go, like, to travel. Mhmm. Like to be able to just pop it on rather than having to replace a transmitter, charge it up for two hours.

Cathy (34:27)

And, yeah, I'm very excited about that. Hearing good things.

Scott Benner (34:31)

Good. Yeah. No. I am I am as well. I'm I'm interested to know, how it's going.

Scott Benner (34:36)

Speaking of sensors, I think Arden's laying on hers right now because I'm seeing what looks like a, a compression low. People just asked me the other day if she's gonna try the fifteen day sensor. And I said, oh, she's an adult. Like, I don't even know if she knows it exists. I said, hey.

Scott Benner (34:52)

Dexcom just went to a fifteen day sensor. Do you wanna try it? And she's, like, sitting in bed doing her homework. We just gotten done talking about, like, possibilities for grad school. You know what I mean?

Scott Benner (35:02)

And she goes, I don't know, dad. What do you think?

Cathy (35:08)

It's dramatic to have to switch. I started on on Omni

Scott Benner (35:12)

Mhmm.

Cathy (35:13)

And had a lot of problems with the adhesives.

Scott Benner (35:17)

It wasn't good for you. Was it not sticking or sticking too much for you, or did you get a rash from it?

Cathy (35:22)

It was terrible terrible rashes and tunneling and yeah.

Scott Benner (35:27)

Okay. Just didn't work right for you?

Cathy (35:29)

Right. Yeah. Fair enough. No. I I didn't have any problem with accuracy or anything like that.

Cathy (35:34)

It was just the adhesive didn't work for me. And my doctor did say something about as I'm getting older, Medtronic is kind of easier to get through Medicare.

Scott Benner (35:44)

So Medicare likes Medtronic?

Cathy (35:46)

I think so. That's what she said anyway.

Scott Benner (35:48)

Well, listen. Whatever whatever's free and whatever works. That sounds about right to me. What's your management like now today? Like, do you I mean, if you just only had a pump for a couple of years and you're you know, you pretty I mean, they brought you on pretty slow.

Scott Benner (36:02)

You said you started sliding scale even though it was ten years ago. So, I mean, how do you describe your management now? Where does your a one c sit? Do your successes look like what you're, you know, what you're working towards? Does the Graves interfere?

Cathy (36:17)

My last a one c was 6.5.

Scott Benner (36:20)

Good for you.

Cathy (36:21)

And I'm I'm comfortable with that. I because with the with the med tri, I can get the target down to a 100, and that's what I have it set at. But I I, yeah, I feel pretty comfortable with how things are going. It seems like when I go off track, I go off track hard, and it takes it a while to come back. And I'm not but I figured out every once in a while, I do need to calibrate and put in a blood glucose reading, or it will suspend too long.

Cathy (36:50)

When I did the update for instinct, it was suspending too long and causing a problem there. So, you know, of course, bump high and but little things like that to figure out. And with the stale donuts, I figured out that's Tylenol that I was taking for after the surgery. And that's that's a known issue with that, but I was going severely low. In fact, I was at my endocrinologist office getting labs, and they're real good about that.

Cathy (37:19)

But and waiting for that, my blood glucose started dropping, so I'm eating jelly beans that I could find out of my bag at my endocrinologist office. And, they called me at 10:00 that night. I had a blood glucose of 34 sitting at the endocrinologist.

Scott Benner (37:37)

Wait. Are you are you telling me that I wanna make sure I understand. Like, acetaminophen messes up the sensor, and so you were low and didn't know it. Is that the context?

Cathy (37:46)

No. With the it's it reads too high, so it delivers too much insulin is my understanding.

Scott Benner (37:54)

Oh, so yeah. Then the okay. So the the sensor gets messed up by the acetaminophen. It gave you a high blood sugar. You were getting insulin for it, but you didn't need the insulin.

Cathy (38:05)

Right.

Scott Benner (38:05)

Made you low. Okay. Alright. Yeah. I I felt like I was that's what you're saying, but I wanted to make sure that that's what we were getting at.

Aging with Type 1 Diabetes

Scott Benner (38:11)

How do you think about, like, the rest of your life with diabetes? Do you spend a lot of time wondering how you're gonna manage as you get older? Are you making plans for it?

Cathy (38:21)

Yes. I do. And I I guess I'm not even sure how to begin to plan for that because my mom is 92 years old. Bless her heart.

Scott Benner (38:31)

Oh my gosh.

Cathy (38:32)

Yeah. But she's in memory care, so I, you know, I hear things walking by the nurses and the medical assistants and and that type of thing. You know, comments like, well, I haven't given their noon insulin yet and saw somebody being called in to change a sensor. I'm assuming it was a sensor. I'm like, I don't know.

Cathy (38:54)

I don't know how you change those protocols because, you know, I need that pre bolus.

Scott Benner (38:59)

Yeah.

Cathy (38:59)

Or if you don't feed me and I'm just sitting there, my insulin is being suspended that you know, that's a a bad problem for me too.

Scott Benner (39:09)

I have to tell you, Kathy, I find myself when I'm talking to older people who are thinking about this, what strikes me the most is that at the moment, they're trying to plan for the future. And they are people who pre bolus for their meals and take themselves very seriously, and they're really on top of their health. And they're trying to imagine how to do it out into the future. And all they're hearing, you know, from, you know, stories and and whatnot is that, like, you're gonna get into a home one day, and that's all gonna go out the window. And when I talk to people who who work in those facilities, they talk about it differently.

Scott Benner (39:48)

They talk about it like, well, they're older now. They're not gonna live much longer. It's not that big of a deal if their a one c is seven. Like, you you realize that their focus and your focus are not the same thing. And then that realization that comes that you'll get older and you probably won't you won't be able to fight back or you might be in a position where you can't argue or stick up for yourself or advocate.

Scott Benner (40:10)

And even if you could, they wouldn't have the the infrastructure in place to handle it for you. Like, it's such a I find these conversations to be very, I don't know, sullen.

Cathy (40:20)

I come from a very loving family. I have supportive friends, but yeah, that I mean, that is in my thought process that I I live alone, that who's who's gonna advocate for me because even to back up a little bit when I had that surgery, very fine hospital. And I was, you know, at 07:00 on a Friday night, and I just got out of ten hours of surgery. My eyes are practically swollen shut, and I was talking to the medical assistant. I'm like, I'm I'm not comfortable just Yeah.

Cathy (40:52)

Being kicked out here. I don't I don't feel like that's safe, she said. And I I'm not gonna name names here. And she said, well, you could go to the emergency room and see if you can be embedded that way.

Scott Benner (41:04)

That's terrible. Yeah. Yeah.

Cathy (41:07)

So the my support person had had walked away. I don't know. Bathroom break or something. And when they came back, all of a sudden, was going to the hospital. She he's like, what did you do?

Cathy (41:19)

I've learned how to be an advocate for myself even even in this situation that and they said, well, we'll we'll check your blood sugar. And I look back at records overnight there. It was, like, one test in the morning before I left, and I'm like, no. Really. You know, I haven't I haven't eaten in at least twelve hours.

Scott Benner (41:40)

Right.

Cathy (41:41)

In twenty probably closer to 20, and I I can be in just as much trouble when I don't have insulin going in because the pump is suspending as I need to be able to manage that, and they didn't get that. And that's my concern between type one and two. I'm not I understand the issues with type two. I was misdiagnosed that way for a long time, but I need people to understand that I have no insulin going in, and I can be in just as much trouble with nothing as

Scott Benner (42:08)

Mhmm. That's that's too much. Well, isn't that really the point, though, is that institutionally, the understanding is low. I mean, look. You got done with that surgery, and they were like, well, we can't help you.

Scott Benner (42:18)

You gotta get out of here. And so even if you would've went to a hospital, who knows how good of a job they would've done for you? And then thinking about long term care as as an elder person, you're gonna be lucky to even be in a situation that good with as far as people's understanding

Cathy (42:34)

Right.

Scott Benner (42:35)

And and desire to be, you know, desire to to be proactive in a way that lends to health when they're looking at you and your you know, the actuarial table says you're not gonna be here for much longer. So they're not thinking about you the same way anymore. It's like, you know, type one diabetes is like a lifetime of, like, I gotta take a good care of this because I wanna live and I wanna be healthy. What happens when you get to the end and there is no there are just not that many years left? You know?

Scott Benner (43:05)

Like, I don't I'm I'm so sorry. I don't wanna be a bummer, but, like, it doesn't get talked about enough. And I wonder when I'm talking to people who are in the service side of that industry, you know, and and it really is it really is a business taking care of older people. You think about how they think about it, and then you think about how you, the person, thinks about themselves, and that you still have the same desire at 70 and 75 and 80 about your type one diabetes that you had when you were, you know, 50 and 60 and some people for their whole lives. Like, how are you supposed to just give that away and say, oh, yeah.

Scott Benner (43:41)

I I guess I'm probably not gonna live much longer, so this is okay if my a one c is seven or if I don't get my insulin right away? Like, how do you make yourself right with the fact that that's how the system looks at you? And I I don't I really don't know the answer to that at all.

Cathy (43:54)

That's a good point that I hadn't kind of thought about it that way. You know? I kinda take it from my perspective. But, yeah, it is a it is a business, and I I do see that. Yeah.

Cathy (44:03)

I feel like my mom is in a very good place. But yeah.

Scott Benner (44:08)

They're not gonna you're not getting the round the clock attention. I mean, look at yourself as an adult now. Right? You've been taking care of your diabetes for a decade. Think about all the effort and time you put into it.

Scott Benner (44:20)

Like, how could they possibly do that for everybody in the building? Like, you could barely get your doctor to understand your diabetes. You're gonna get you know, every six hours, a new person, you know, streams through your room to take care of you. They're all gonna understand it like that, and you're gonna be older and maybe not in the same I don't know. Maybe you're not gonna be in the same situation where you can actually be directive about it at that point and tell them what to do.

Scott Benner (44:43)

I think in the end, it's just an incredibly unfair fact of life if you have type one and you live a long time. Like, it just sucks, and I don't know if there's much you're gonna be able to do about it. Maybe the automated systems by then will be so much so that, you know, it'll be like a slap it on pump, they'll be comfortable doing it because they won't have to understand how it, you know, quote, unquote, understand how it works because it's just gonna do the thing. You you know, maybe maybe that's maybe that'll end up being the key for older people. It would be nice because I think if you're waiting for the the staff or the institution to get the desire to take care of people on that level, that's never gonna happen.

Scott Benner (45:23)

You know, they couldn't keep my mom free of a UTI. They're gonna take care of diabetes type one. You know what mean? And do a great job of it. I I don't see it happening.

Scott Benner (45:31)

But, yeah, maybe the maybe the automation is the answer.

Cathy (45:35)

Mhmm.

Scott Benner (45:36)

Yeah. I'm sorry. Did I completely ruin your day? Kathy's like, it's nine in the morning. Will you calm down?

Cathy (45:46)

No. I'm I'm pretty resilient type of person. I I I go with the flow.

Scott Benner (45:50)

Well, that's obvious.

Cathy (45:52)

I just wanna live a full life.

Scott Benner (45:54)

Yeah. It's awesome. And you're doing I mean, listen. From what I'm hearing from you, you are putting a ton of effort and time and focus into your health. I wish more people put this kind of effort into themselves.

Scott Benner (46:08)

You were really trying, it sounds to me.

Cathy (46:10)

Mhmm.

Scott Benner (46:11)

Yeah. You feel like you're doing everything you can?

Cathy (46:14)

You know, sometimes I I feel like I need to let it go too. Mhmm. Let those automatic like, you know, like we talk they let those automatic systems roll. And I'm I get all excited about things, and we'll do 20 things at once, and then we're gonna fix this. We're gonna fix that.

Cathy (46:33)

You know, kinda like New Year's resolutions that, oh, we'll do this all at once. And then three months down the line, it was like, I'm tired of doctors. Cancel that appointment. We're not going there. We're not doing that.

Scott Benner (46:45)

Yeah. You did say something earlier that I didn't dig into. You said something about, like, when it goes off the rails, it really goes. Does that mean, like, when you lose your focus on care, you let it go for a while until you decide to pick it back up again, or did you mean something different?

Cathy (47:00)

I don't feel like burnout is an issue for me, but in, like I said, very active, you know, meetings all day long out in the public that I won't take the I've got a sensor going bad or, you know, a fusion set needs changed, then it's have a terrible problem if my infusion set. I've got a bad site and, you know, here I'm up to 400 and don't take the time to say, you know, hey. I need to I need to take care of myself, I think. Maybe it even goes back to that I don't don't want other people to see this.

Scott Benner (47:40)

Yeah. Do you think I've actually just had more conversations with people recently where, you know, they were trying to tell me what was it? Like, Omnipod five has been such a big deal for them. And I'm, like, picking through all the reasons, I think. And they're like, no.

Scott Benner (47:54)

No. It's just it's the phone. And I'm like, what? And they said, you know, I can pull my phone out and give myself insulin without anybody knowing. And I said, oh, were you not giving yourself insulin when you needed to because you didn't wanna pull out a controller?

Scott Benner (48:06)

And they were like, yeah. Absolutely. So that's a problem for some people. Yeah. Yeah.

Scott Benner (48:11)

Just not wanting people to see.

Cathy (48:13)

I kinda I had a situation where, you know, during COVID, worked in an office where we had cubicles and plexiglass up over everybody, and I think I was just diagnosed formally with type one and and well, it would have been a little after. But, you know, if you have the conversation with everybody, if you hear the alarm going off, just, you know, I'm probably okay. Just don't worry about it. But that was a time where I was having a lot of alarms. So so I'm sitting in a plexiglass cubicle, and my alarm's going off, and nobody responded at all.

Cathy (48:51)

That was a poignant moment for me. It's like, okay. Maybe we need to find a middle ground here that maybe sometime, you know, I need some help, and it's a

Scott Benner (49:01)

Yeah. Also, it would kinda tell you, like, nobody's really looking. Like, that's sort of that part's in your head. Like, know, if all that beeping is going and no one's coming, you're just like, oh, I guess nobody gives a crap. You know?

Scott Benner (49:12)

Like, I nobody's really paying attention to all this maybe. Whatever I I'm gonna assume that the thing that my brain's missing where I don't really seem to care what other people know about me, I'm gonna tell you in about a month, there's gonna be an episode of the podcast out where I have a doctor on who did, like, an embolization surgery on me for, like, internal hemorrhoids, and I had, like, this crazy bleeding and everything.

Cathy (49:34)

Yeah. I remember reading about that.

Scott Benner (49:36)

While I'm on the the episode recording with the doctor, it actually occurred to me halfway through. I'm like, what is wrong with me that I don't mind talking about this? There should be a mechanism in my brain that stops me from saying this out loud. Right? I wonder if in my regular life I actually from having all these conversations and from having a daughter with type one, I often wonder if I had diabetes, if especially type one, would I walk the walk or would this all just be academic and it would go out the window?

Scott Benner (50:10)

Like, do you know what I mean? Like, I wonder if I wouldn't be in the same exact situation as that person I was talking to. It's like, well, I didn't wanna pull out that controller and let people know I needed insulin. Like, I wonder if that would happen to me. Or, you know, Arden had a bunch of stuff at college yesterday.

Scott Benner (50:25)

She had to go to a bunch of kinda lectures and stuff, about her you know, what she wants to do in grad school. So she was at these events and people were talking. And you know how they always, you know, say, like, everything happens on the worst day. Right? So her GLP medication kinda waned in the last day or so, and she hasn't injected it again yet.

Scott Benner (50:46)

So her settings that work great for while the GLP's running were certainly starting not to work. So they're starting not to work. She's real busy all day, probably eating at, like, buffet tables at these these events and everything. And I must have and I haven't done this in a long time. I must have texted her three times yesterday.

Scott Benner (51:05)

Arden, you've really simple, but, like, hey. The GLP is gone. You need to, like, put in more manual insulin today. Hey, Arden. Please bolus here.

Scott Benner (51:14)

Arden, would you put a temp basal in for an hour? Like, blah blah blah. Like and I haven't talked to her about, that in a long time. And so she comes home last night. We're sitting together.

Scott Benner (51:23)

Actually, we were sitting with my phone looking at old videos of, like, when she was a baby. It was a really nice hour. I just turned to her and I was like, why did you not bolus yesterday when I asked you to? And she goes, I was busy. And I was like and it wasn't like I'm ignoring it or I don't care.

Scott Benner (51:39)

She's just like there was a lot going on. And I I wish I could dig more into that with her, but because of you know, it's a father son relationship, I can't. You know? There's only so far I can push. And so I but it was interesting to hear her her perspective.

Scott Benner (51:57)

And then I kinda take her perspective back, I blend it in with other conversations about having other people. I basically try to figure out what's going on with Arden through talking to all you guys. I don't know if that's obvious yet or not, but that's my path. Anyway and I wonder if I had type one diabetes, would I be as bold as I say when I'm speaking, you know, without actually having to deal with it? I I don't know.

Cathy (52:19)

I totally get that. And I grew up in a family, you know, we we don't talk about that. You know, I'm I'm fine. We don't talk about that. And even yeah.

Scott Benner (52:32)

The stuff we talk about here, I think, would shock people. And my wife did not grow up that way. Like, it took years to drag her over to our side. I don't seem to care what other people think, and I really don't and I but but I do in, like, other like, in other ways. Like, I'm know, you I wouldn't want anybody to think of me as being coarse in my real life or, like, you know, I wouldn't I don't wanna make people unhappy.

Scott Benner (52:58)

Like, I'm I'm very concerned about what other people think in situations that make sense, you know, structurally with my relationships. But in this other stuff, like, I really don't care. Like, you are gonna listen to an episode where I'm just describing, like, laying on a floor bleeding from my and I realized, like, I I know how many people are gonna hear that, and it really doesn't I don't care. It's kind of fascinating. I don't know if the Internet fixed that for some people, like, knowing that when you have a a, like, a wider audience, like, it's just it is what it is, and it doesn't really matter.

Scott Benner (53:30)

Because maybe I learned the same lesson you learned sitting in the cubicle when it was beeping, which is nobody really cares all that much. Yeah. You know? So and it really is about you. I think it all really goes back to that story that I've told in the podcast a number of times about taking my son to a diner when he was a kid after a baseball game and the and then putting us in a in a table that was in the middle of the floor surrounded by all these different booths.

Scott Benner (53:55)

And I could tell he felt uncomfortable sitting there because he felt like people were looking at us, and I just said, nobody cares. They're eating. No one's looking at us. And, like, when he looked around and realized they really don't see us, and it it was just a it was a great moment for him where he's like, oh, I I don't need to be everyone's not looking at me all the time. I don't I just don't know where I got that from because I grew up, like like, happy.

Scott Benner (54:18)

I was a fat kid growing up. Like, I know how you feel. Like, god, are people looking at my eyes? Is this happening? What are people thinking about me?

Scott Benner (54:26)

I don't know if maybe it's just maybe it's a defense mechanism I built up over being a kid. I'm not I'm not even sure. I don't know. I'm I'm in my fifties. I don't have time to figure all that out.

Scott Benner (54:36)

I just know I feel better not caring. So, anyway, don't worry about what other people think. You know? Did we, miss anything? Did we not talk about anything that you wanted to bring up?

Every Cure & AI Medical Research

Scott Benner (54:47)

Take your time because I have one more question for you. So tell me, make sure we didn't miss anything here.

Cathy (54:52)

No. I I think I've covered what I other than, I am involved in I've been to Philadelphia for the last five years in a rare disease community, and they are working on it's interesting. I I mean, it's not my work, but they're using AI to find drugs that are already being used or off label for other things and finding drugs that they don't have to be developed, for orphan diseases. So that's pretty cool. I'm actually

Scott Benner (55:26)

Kathy, explain that to me. So what do they do? They load the the data about the molecule in and then ask them AI model. Is there something that it's not being used for that it could be valuable with?

Cathy (55:37)

They collect data, and it it's beyond my scope. But to find, hey, doctor. And and this is my understanding. Doctor in Montana used aspirin for rheumatoid arthritis, and that worked, you know, getting results. Pretty high level AI.

Cathy (55:56)

They've getting some grants. But, anyway, he's a doctor that, wrote a book, Chasing My Career, doctor Fagenbaum. I don't know if you've heard of him out in the Philadelphia area. He's at Penn.

Scott Benner (56:06)

Is he running this program?

Cathy (56:09)

What's that?

Scott Benner (56:09)

Is he running the program that's looking into, like

Cathy (56:12)

It's two different things. What I got involved with is I have Castleman disease. It's a enlarged lymph node, and this was about ten years ago. But the subtype I have of that is fine. They removed it.

Cathy (56:26)

I'm I'm fine. But got involved with it because, you know, you go Google this disease. It's like, holy crap. This is bad. And other subtypes are are really very serious.

Cathy (56:37)

So I got involved with this online group, and what they they have some different ideas about medical research, and they actually crowdsource with actual patients. And I've, you know, filled out surveys and what I think the research direction should be and, you know, how I'm doing, and they have every scrap of my medical records possible. But, anyway, he cured himself. He was, given last rites, like, five times, and he found the drug that would cure him. And it's it's pretty cool.

Cathy (57:08)

They fly us out or a group of us to Philadelphia every year, and we have have a summit and participate in Zoom calls. And and with the crowdsourcing, they wrote a paper on there, actually listed as a collaborator on that paper, and they they spelled my name wrong.

Scott Benner (57:29)

It's called ever Every Cure. Is that right?

Cathy (57:32)

Every Every Cure. And that's the other part of it. He's kinda bounced to working on that.

Scott Benner (57:38)

Mhmm. I'm gonna reach out to them and see if he'll come on and talk about it. That's really interesting.

Cathy (57:43)

If you need some connections, like I said, I'm pretty well connected, and I would be happy to get you some connections if you want.

Scott Benner (57:49)

Well, then, Leah, let's make that easier. Would you please tell me somebody I can contact? Because I'd love to have someone come on and explain what this is.

Cathy (57:55)

Going to have to get into my email for those those names, but I'd I'd be happy to do that.

Scott Benner (58:00)

No. Yeah. Send it to me later. That would be great. Okay.

Cathy (58:02)

It's very interesting work. I get to go out there and hear about the new studies and yeah. I mean, it's very top level, but, you know, I don't understand everything. But the to go there and just see those researchers and what they're doing. You know, these young kids at Penn are just really excited about what they're doing and and helping people.

Cathy (58:22)

You know, I see examples of that every day that like I said, I have the type that's not, you know, not an issue. They took it out, and I'm fine. But there's it can cause very serious disease, and to see the work they're doing is is fabulous.

Scott Benner (58:36)

No. This is really, really cool. I'm so glad I asked you if there's anything else I didn't bring up because I'm gonna reach out to them with your contact and try to get somebody on. I'd like to get him on if I could. This is really interesting.

Scott Benner (58:46)

Okay. Oh, well, can I ask my last question?

Cathy (58:50)

Yes.

Scott Benner (58:51)

Why are you buying stale donuts? Why don't you buy the fresh ones?

Cathy (58:55)

You know, I still walk by there in the grocery store. Like, those are really terrible. What's the expiration date on these? But I was sitting in the pharmacy, and it it took I must have been significantly low. But it because it said under 50, and it took a whole package of doughnuts.

Cathy (59:16)

It's sitting in the pharmacy because that's the only place in the grocery store that has a chair. So, you know, of course, nobody's helping me then, and nobody's asking. Hey, lady.

Scott Benner (59:26)

There is a woman sitting in the pharmacy just scarfing down doughnuts. It it's and no one says anything to you. Like, that isn't that well, I get it. So are you talking about, like, the sale table at the front where they're trying to push out the older food and then there's, like, an orange tag on it that's making it cheaper?

Cathy (59:42)

No. It's a it's it was a whole pallet full of donuts. Think they've tried it.

Scott Benner (59:50)

I just think they should sell fresh donuts is all I'm saying. I don't know why they have to sell stale ones.

Cathy (59:55)

I'm a former retailer. Oh, excuse me. I I get this. They were yeah. They were trying to offload the donuts, and I was helping them.

Scott Benner (1:00:04)

There's a little cooler at the front of my grocery store, and it's just full of prepared foods. So prepackaged, like, meals that you just warm up, Right? That they you know, I think they make there at the store. But they just have big orange labels on them, and they are just at the end of, like, their usefulness. Like, you need to eat them today or tomorrow or they're just gonna get tossed.

Scott Benner (1:00:23)

And, man, people buy out of that cooler constantly. Like, they really like, people do. Like, I see them stop every time and look at it, they're like, oh, okay. And, like, I don't know. I just I've never looked in there.

Scott Benner (1:00:34)

I I guess that's maybe I just I'm lucky I don't need to save 75¢ on a piece of meatloaf. At the same time, like, I'm personally fascinated by how frequently people go to and there's a baked there's a table in front of it with baked goods in the same situation, like stuff that's coming out to the end of its date. I thought for sure that's what you were talking about. Anyway, Kathy, you're delightful. I really do appreciate you doing this with me.

Closing Thoughts

Scott Benner (1:00:56)

And I don't know how you got me to do this at 8AM, but I think it's just because I've known your name for a really long time and I was like, I like Kathy. So, I appreciate you coming on and adding your story to the to the podcast. I was just telling somebody this morning. They asked me what my favorite episode of the podcast was, and I said I I genuinely amassed that a lot. I don't know how to answer it.

Scott Benner (1:01:16)

There's 1,800 episodes now. I really see the podcast more like a diary, And it's just sort of instead of my story on every page, I feel like it's just everyone else's story sort of through my lens maybe, you know, because I'm the one that kinda generally directs the conversations based on my interest and, you know, what pops up in my mind. So I said, don't know how to tell you. I they're all like, the whole thing is my favorite thing. I love the collection of what it is.

Scott Benner (1:01:45)

So I just really appreciate you putting your your story into it. Thank you very much.

Cathy (1:01:50)

Mhmm.

Scott Benner (1:01:50)

It's a pleasure talking.

Cathy (1:01:51)

I will get that get that information to you.

Scott Benner (1:01:54)

Kathy, you're lovely. Hold on one second for me. Okay? I'd like to remind you again about the MiniMed seven eighty g automated insulin delivery system, which of course anticipates, adjusts, and corrects every five minutes twenty four seven. It works around the clock so you can focus on what matters.

Scott Benner (1:02:17)

The juice box community knows the importance of using technology to simplify managing diabetes. To learn more about how you can spend less time and effort managing your diabetes, visit my link, medtronicdiabetes.com/juicebox. The podcast episode that you just enjoyed was sponsored by Eversense CGM. They make the Eversense three sixty five. That thing lasts a whole year.

Scott Benner (1:02:43)

One insertion every year? Come on. You probably feel like I'm messing with you, but I'm not. Ever since cgm.com/juicebox. This episode of the Juice Box podcast was sponsored by US Med.

Scott Benner (1:02:59)

U smed.com/juicebox, or call (888) 721-1514. Get started today with US Med. Links in the show notes. Links at juiceboxpodcast.com. Thank you so much for listening.

Scott Benner (1:03:15)

I'll be back very soon with another episode of the juice box podcast. If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple Podcasts and set it up so that it downloads all new episodes, I'll be your best friend. And if you leave a five star review, oh, I'll probably send you a Christmas card.

Scott Benner (1:03:42)

Would you like a Christmas card? If you're looking for community around type one diabetes, check out the Juice Box podcast private Facebook group. Juice Box podcast, type one diabetes. But everybody is welcome. Type one, type two, gestational, loved ones, it doesn't matter to me.

Scott Benner (1:04:00)

If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, type one diabetes on Facebook. If you have a podcast and you need a fantastic editor, you want Rob from Wrong Way Recording. Listen. Truth be told, I'm, like, 20% smarter when Rob edits me. He takes out all the, like, gaps of time and when I go, and stuff like that.

Scott Benner (1:04:25)

And it just I don't know, man. Like, I listen back and I'm like, why do I sound smarter? And then I remember because I did one smart thing. I hired Rob at wrongwayrecording.com.

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#1832 Ninja Training, Mom Guilt, and Pop-Tarts