#877 Be Undeniable

Karen has type 1 diabetes and a great message.

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

Scott Benner 0:00
Hello friends and welcome to episode 877 of the Juicebox Podcast.

Today I'll be speaking with Karen and Karen has had type one diabetes for a very long time. She's on the show today to talk about her life with type one, and to speak a little bit about being an advocate for your own medical needs. While you're listening today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please Always consult a physician before making any changes to your health care plan, or becoming bold with insulin. Now, if you're a US resident who has type one diabetes, or is the caregiver of someone with type one, please consider going to T one D exchange.org. Forward slash juice box and completing their survey. This survey helps support type one diabetes research, you can do it completely from your home. It's HIPAA compliant, absolutely anonymous take you maybe 10 minutes or a little less, you're really going to help AT T one D exchange.org. Forward slash juice box. If you're looking for some nice comfy sheets, jammies, or actually joggers, like I'm wearing now cozy earth.com use the offer code juice box at checkout to save 35% This episode of The Juicebox Podcast is brought to you by us med us med is where my daughter gets her diabetes supplies from and you could to us med.com forward slash juice box or call 888-721-1514 go online or call the number get your free benefits check and get started with us med. today's podcast is also sponsored by touched by type one.org touched by type one is a wonderful organization helping people with type one diabetes. And they've asked me to ask you if you wouldn't go check them out on Facebook, Instagram, and of course their website touched by type one.org. Check out that link. See all the good they're doing? Check out what's going on over there. They have a ton of different things coming up, including a speaking event in Orlando that I will be at touched by type one bad word.

Karen 2:29
My name is Karen and I live about 20 miles outside of Boston. And I was diagnosed with diabetes in 1977 1977.

Scott Benner 2:37
Did you live in Boston your whole life or? Yes. Really? How come you don't sound like you're like going to the bar or something like that?

Karen 2:48
Well, because my mother was from New Jersey. My father was from Missouri.

Scott Benner 2:53
It's like why do you spend the most? You didn't pick up tonight at home? Right? Yeah,

Karen 2:59
I love when you say water, you know, brings me back to my grandmother's house in New Jersey.

Scott Benner 3:05
You should tell my kids that because daily, I am mocked at my house still. Yeah. And the truth of it is if you told me right now, you say the word in one way. But there's another way to say it. And it's correct. What is it? I don't even know that I could. I don't even know. Yeah. Like I know that I say data because people have beat it into me. Yeah, right. But it's my inclination to say data. Yeah, but I can tell you data and data. I know that the stuff that comes out of the faucet is water. And I know that somebody else says it a different way. And I mean, is it water?

Unknown Speaker 3:51
I don't even know.

Scott Benner 3:53
Karen I don't even know. Was I wrong? No, you're not wrong. So, so I'm supposed to be saying water.

Karen 4:01
That's a Well, that's what people will say water.

Unknown Speaker 4:05
That sounds like it has.

Scott Benner 4:06
Oh God. We're gonna like spin down a rabbit hole.

Unknown Speaker 4:10
It sounds it sounds wrong to me.

Karen 4:14
I don't know what what the way New Jerseyans say water? It sounds like it's a U instead of an A?

Scott Benner 4:20
Yeah. I always think of it as being like, what like wott Hey, har water. Why not how you spell it? So you're saying? Wa is wha Hmm, I guess it is water. But that sounds really wrong.

Karen 4:40
Yeah. Sounds wrong on you. That's for sure.

Scott Benner 4:44
In my brain has to tell me to say it that way. Like I'm forcing myself to say it like that. It's very interesting. Okay, anyway. 1977 Well, you missed the Bicentennial by just a year. Isn't that a shame? You

Karen 4:55
know, I know. Well, I was not even married a year. Yeah. We were still newlyweds. And I was 22 at the time. And so I had seen my gynecologist because I just had a miscarriage. And so he sent me in for some blood tests. And it just popped up in a blood test. And he called me on the phone and said, Well, you have diabetes, so you should go see an internist. Right. So that was my introduction to my diagnosis over the phone, you know, just was kind of surprising. You know, of course, my mother is like, well, we don't have that in our family. So she had to go research all my father's family and give them a third degree. You know, it's like, I'm a mom, you know, this. It's an autoimmune disease, you have Hashimotos. So I don't think you should look any further than that.

Scott Benner 5:57
I've been married a long time here. And I know who to blame. Let me get your dad and his mom. I know, these people from Missouri.

Karen 6:06
That's right. You know,

Scott Benner 6:07
they're the ones. Well, isn't that interesting that well, first of all, it's interesting that you were diagnosed when I was five. And, and I'm looking at you right now. And I don't think we look any different niche. So I either You look terrific. Or I'm in trouble. I can't figure out what it is

Karen 6:24
really on this on this screen to look to read. So a lot of people think I'm, I'm younger than I am. Yeah, no kidding.

Scott Benner 6:31
I wonder why. It's because you hide inside from the winter problems.

Karen 6:35
No, no, no, it's because my mother never went gray until she was like, 85. You know, so I don't have too much gray hair. That's

Scott Benner 6:42
your that's your real color. So it looks natural on you. Yeah. Whereas and I don't want to add anybody but most women I see on the streets who are of a certain age are dying.

Karen 6:55
Yeah. And actually, somebody said to me one day, at the studio, they looked at me, and it was a friend of mine for a long time. And she goes, Oh, you don't even dye your hair. Because I have I have some gray strands coming through, you know, so it's like, finally I can prove I never dyed my hair. Because everybody assumes that I do my

Scott Benner 7:17
gray hair gray hairs fun. I yeah, I have a couple. And I think I have a couple of them. The other night artists like you know, there's a lot of gray in your hair. I was gonna say

Karen 7:25
you have to have a lot of gray. For what you have to have to deal with

Scott Benner 7:31
no idea. You really have no idea, man, I just say for younger people to get ready the worst gray hair. I can't believe I'm just gonna say this. It's in your nose if you get a gray hairs coarser and so it will grow through your nose like a sword and just reach to the other side and eventually just poke you and a prickly and when you're when you're you know, not accustomed that the first time it happens. You spend days gone like why is my nose itching and running? Something's wrong with me. And then you look in there. It's horrifying. Like, oh god, there's a gray hair in my nose and Oh god, it's a steel BB. It's growing through the other side of

Karen 8:14
my husband was very good about that stuff. You know, he's always watching for things he should be clipping out.

Scott Benner 8:21
I'm in there like a hedgehog. I gotta be honest with you. I was like, Get out. Get out. Everybody get out. Yeah, thank God, my ears. I think I would I saw. I saw a video online the other day where they waxed an older man's ear canal. And they really they put they put wax like into his ear put on and rip and it came out like a giant cotton ball. And I was like, more? More. I was mortified. Okay.

Unknown Speaker 8:49
7777 Yeah,

Scott Benner 8:52
and beef and pork.

Karen 8:55
Yes. He's started me on one injection of the day, believe it or not. And I've I've heard other people some other people say that that was what they started on to which, you know, now we know is totally ridiculous. You know, we were doing urine testing. So clinic test with a little test tube and, and all that, you know, and my blue and my orange, you know. And, interestingly enough, I weigh the same amount as I did when I was diagnosed back then. And he put me on the diet. Like I was a type two or something, you

Scott Benner 9:30
know, trying to keep you away from carbs, you think?

Karen 9:33
I don't know. But he said, you know, it seems to when I think think back on it now. I mean, that would be maybe standard protocol for someone with type two, you know, because a little bit of weight loss can make a big difference, but I mean, I'm, I'm 142 now and I'm a yoga teacher, you know, it's like I don't have a lot of fat, you know, I got muscles, you know and So I went on that for a couple of months and one shot a day, you know, and took off like 40 pounds in a hurry. So the doctor increased my, my calories to 1500 calories a day and I lost another 10 pounds. Well, you were

Unknown Speaker 10:22
90 pounds at some point.

Karen 10:24
I was 102. How tall are you? I'm 530. My good knife. Five, four. Yeah. Yeah. So he says, Well, I, I guess you couldn't handle the extra food. I'm thinking, well, how? Maybe you give me a little more insulin?

Unknown Speaker 10:41
Because it's possible

Scott Benner 10:42
your blood sugar is still very high. And you're losing weight because of that, right?

Karen 10:46
Absolutely. Absolutely had to be. Absolutely had to be. So he took me on, he put me on. Finally, multiple daily injections, beef, pork, insulin, NPH. And regular. And he thought I was doing great that I thought I found out later that I really wasn't, you know, because back then it was really hard to find any information. We didn't have the internet. We didn't have Google. And, you know, all we had was diabetes forecast magazine, which really didn't give you a lot of management information back then. You know, it was mostly about, you know, what celebrity has diabetes and what school kids are, you know, raising money for JDRF or something like that. And really nothing of much value in terms of management was there. Although I did find an ad one day for glucometer. So I took it upon myself to buy it as Oh, this has got to be better than what I'm doing. You know. So I started testing and for for the first time, I actually had information that I could work with. You know, it's not like, what my blood sugar might have been two hours ago from a clinic test, but now I can find out what it is right now.

Scott Benner 12:12
What what year, do you think that was current that you got it? That was?

Karen 12:16
That was probably maybe 1980?

Scott Benner 12:19
So you round that the other way for four years or more?

Karen 12:23
Yeah. And, and we'll find out what, what happened. Because of that, you know. So I go into the doctor on my next appointment, and I'm, I'm all jazzed up about this glucometer and everything, and I'm telling them about what my numbers are when I get up and just say he goes way, way way. He says, I don't know what the numbers mean, aren't you still testing your urine? And I go? No, this is so much better. You know, and it was like, a rude awakening for me that, you know, I was probably not in the right place, not in with the right doctor. So a little bit later on, I discovered a book that changed my life in a bookstore. And, you know, we still didn't have the internet and all that jazz. And it was called the diet, diabetics, self managed self care methods. And it was written by a husband and wife team of Intrapreneurs ologists, who also had type one diabetes. And it laid out, you know, here's finally all that information about what the a one C numbers mean, you know, what your, you know, what level you should be at to have the best results. And a program using a different insulin. That was what they termed as sort of the poor man's pump. And it involved Ultra lenti insulin and using that instead of NPH. And this is also the first time I had ever read in print. That mph may not last as long as advertised in everybody. And that was that ended up being a very important factor in my management. No,

Unknown Speaker 14:19
yeah. So

Karen 14:26
I started to implement what I could, but I still didn't have that ultra lenti insulin. So the next appointment that I went to with my internist, I asked what my a one C level was now knowing what they meant. And he told me and I was obviously profoundly disappointed. And he said, he says, Well, he thinks he's being, you know, consoling, good doctors as well. You know, sometimes it just can't be any better than that. And I was bullied. I Whereas both because I said, Look, I'm only 10 years in now, I have written apathy. I have neuropathy. You know, do I need to get kidney disease? Before I get this under control?

Scott Benner 15:15
Yeah, you make me think that there's so many, obviously processes that happened inside of your body that take a lifetime to come to an end, let's just think of aging, right? Like you don't see aging happen. And if you're lucky, you make it to, you know, a ripe old age and you dropped it. But that thing's been happening to you the entire time. We don't think of it that way. Not until you get something like hypothyroidism, or Hashimotos, or diabetes or something to that effect, where the whole process is sped up. And the the the the human inclination that things are going to change. And that's okay, because they're going to change slowly enough that I won't care by the time I'm in the can, right? Like, your brain doesn't switch when your situation fast forwards like it does. Right. So the doctor says something like, oh, it's the best you can do. Or don't worry, this is how it is. Except Except you're the one who's I mean, what are you 32 years old with reference to it the time yeah. 22 By the way, the diabetes self care method by Charles Peterson and Louise Jacque Giovanni Vic Peterson. First published in 1984. Yeah.

Karen 16:34
So is that well, so I didn't find it till later, I guess. Yeah.

Scott Benner 16:37
And the blurb is it teaches diabetics How to Achieve Self self help management for a freer, more balanced lifestyle and provides the most current information about insulin dosage adjustments, exercise therapy, glucose monitoring options, diabetes medications, and they should have just got a podcast, it's much easier. You don't have to write down all the words that Yeah.

Karen 17:03
Thinking back on that time, was like, in the meantime, I have become a runner, you know, and I can't even imagine how I managed to stay safe out there. You know, I would get up in the morning, I'd have like a glass of cran apple juice or something, not even, you know, full strength as low sugar and go out and run five miles, you know, and I'd ran 40 miles a week for a couple of years. And I think and I had you know, my little sugar packets in my in a plastic bag tucked in my waistband just in case. And I think I only once had one time when I was really sure I wasn't going to make it home. But that was like a 13 mile run. And I never did that again.

Scott Benner 17:57
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Karen 21:54
but, you know imagine all the chances that we took you know people in my age that were diagnosed when I was just because we didn't have the information we have now like the Dexcom. And you know, all that is just it boggles my mind to think because I don't want to be anywhere away from my phone to see my Dexcom now that I have it.

Scott Benner 22:17
You lived without Did you ever have a seizure? Oh, yeah, I've had seizures. Yeah. A number of them like more than you can recall.

Karen 22:26
My husband can recall. Yeah, probably. Well, more than five probably

Scott Benner 22:33
okay. You know, do you ever when you did he ever tell you? Where they were any worse than others? Like, did you ever think like I thought this was it?

Karen 22:43
Yeah. And actually, at one time, I told him I thought this was going to be an IME. And I remember thinking it was in the middle of the night, I had a really bad insulin reaction. And he's given me glucose. G voc and and I had been, you know, drinking juice and stuff. And and I remember thinking to myself as I laid myself down in the bedroom, is this. Is this the way I'm gonna go out? Really? Come on. It's like, after all this, you know,

Scott Benner 23:16
Karen, I have to I have to clarify something with you. Did this happen recently?

Karen 23:21
Actually, this did happen. We so you

Scott Benner 23:23
actually use G voc? Oh, I thought you were I thought you I thought the people who make Jeeva hypo Penn, we're just going to be thrilled that their product was being used artificially as glucagon in an old story, but this actually happened to you recently.

Karen 23:37
This was like a couple of months ago. Wow. Okay. Yeah. It was just like a ridiculous drop in the middle of the night. You know?

Scott Benner 23:45
That's the Dexcom catch it.

Karen 23:48
Oh, yes. That's why my husband, he goes to bed much later than me. And so he came up because his phone went off. What the hell's going on? You know? Don't ask me.

Scott Benner 24:03
He's like, I'm too old to meet another person and start over again. You either have to stay alive or I'm going with you. There's no in between here. Yeah.

Karen 24:12
And he's 10 years older than me. So

Scott Benner 24:15
he must appreciate that hypo pan then because it is easy to use, right? Oh, yeah.

Karen 24:19
So much better than then the box with the, you know, mixing everything together and all that jazz, you know, and the G folk the hypo pen, especially the one that isn't, you know, that's not the injections is the one I carry with me because many times, you know, at all conscious, I can still give it to myself. Yeah. You know, and this, you know, the teachers of the studio, if there's something going on. If they need to give it to me, it's very easy. You just tell him no, it's like a epi pen, you know? And

Unknown Speaker 24:54
would you call yourself hyper one aware?

Karen 24:57
You Oh, definitely. Yes. Absolute Luckily, yeah, that was another thing that came along with everything else, you know, but I'm very blessed that laser was available in the 90s. Otherwise, I probably wouldn't be able to see. And now they have the injections in the eyes that are even better than laser. And, you know, so it's, it's really been a blessing to live this long. You know? And, and you know, when you're everything you read back then is not very optimistic, you know about whether you're going to have children or how long you're gonna live. And you know,

Scott Benner 25:39
well, you probably had that first miscarriage because of you were probably, I mean, you were undiagnosed when you were pregnant. Right. So

Karen 25:47
right, that's right. Yeah. Wow. Yeah, I think the first one was that that they didn't think the other ones really had anything to do with it. Because it was later on. You had more than one. Yes, they did. We but we have other fertility problems between us. So there's a lot going on there anyway,

Unknown Speaker 26:05
did you end up having any kids? No,

Karen 26:08
we never did we have cats.

Scott Benner 26:11
Hey, look at that cat doesn't want to go to college.

Karen 26:13
Perfect. That's right. You know?

Scott Benner 26:17
I have a kid I trade for a cat. What do you think of that?

Karen 26:22
I have three cats. And we had goats. We had a lot of different things, you know, so we managed to fill in this space a little bit, maybe not the way we expected. But, you know, yeah, it's been a good life anyway.

Scott Benner 26:35
Well, it's interesting to hear you say it's been a good life. And at the same time, you're talking about first four years, not really being managed at all having to figure out what a glucometer was on your own have to teach your doctor what blood sugar readings, and then having to find a book to even figure out more things. You're just on the edge probably the whole time. Probably never using enough insulin and, and yet still getting low. Yeah. Yeah. That's fascinating. And yeah, what is

Karen 27:07
his crazy, you know? So anyway, after I told the doctor, you know, and he decided to send me to his and endocrinologist friend, who apparently was the one that he was getting, you know, if he had a question about me, he asked him and stuff. So he sent me to the Endo. And the endo was kind of, he's, he's sort I think, I came in, and he already had, like, a decision in his mind that I was, like, a problem patient or something like that. So, you know, he sort of treated me like, I was just being non compliant, you know. And I mean, nothing could be further from the truth. For the last 45 years, I have written down and weighed every single thing I eat, you know, or if I had packaged, you know, information, that was good. But I mean, I've been very vigilant about my diet and everything else that I did. So just, you know, I'm trying not to get too upset about it. And so I said, Well, I want to really want to try another insulin because I don't think MPH is lasting, you know, long enough in May. And it was just no, you know, just no. And so, being the stubborn person that I am, I went home, I started testing every two hours. And I kept very detailed records. And I sent them all to the dam. And so he, you know, so eventually, he ended up being my doctor. And you could really see from the test, the testing that I did that there was a big hole in my day where I wasn't being covered by anything, because the the NPH was just cranking out, you know, before whatever hours they they expected it to. So and as it turned out, insulin didn't need a prescription back then. So I decided to go to the drugstore, and I bought myself a vial of ultra lentil. And I started to implement the, the method that was in the book, right? So you take two shots of ultra lenti a day, 12 hours apart, whenever you want to, you know, make that 12 hours and then just like a pump beat, so that's like your Basal insulin, and then your you would just inject regular for when you're going to eat right, so I started I started doing that for a couple of months and I went back to my internist had an N A one C, and I asked him what it was. He goes It was 7.2. That was like, at least two whole points down because I'm sure it was in the nine. Yeah. You know? And he said, and I said, Well, I'm just so smart. You've got this. But did you do my sample? I went on insulin, that doctor, my other doctor specifically told me not to go on. Right. And

Scott Benner 30:30
don't worry, I read it in the book. It's good. Yeah.

Karen 30:34
That's the equivalent of off the internet now, you know? Yeah. And so, you know, he really couldn't, couldn't argue with that, you know? Sure. So we fast forward a little, a little time. And then he was decided he was going to move to California with his because his wife got a promotion. So he's gonna send me to his friend, permanently, right. And I said, Well, I don't know. Because, you know, I did. What do you exactly told me not to do? And he said, Well, it'll be fine. It'll be fine. So the first appointment with the Endo, the first thing he says to me is, well, I guess, mph just doesn't last very long for you. So which is what I went in with the first time to tell him Yeah, and after that. All right, our relationship just absolutely blossomed. He was such a blessing in my life after that, you know, there was never an appointment that I went to, that he didn't tell me something new he discovered or something he'd heard about at a conference or something. And he would tell me, since I tell other doctors about you, you know, he says, You're like my star patient. Really, you know, look where it started, you know, we became very, very close after that. And I was I was just torn apart when he retired, you know, and, and he's passed away now. But he's, he made such a difference in my life. And he was the one that got me on a pump. Fine. And it was, you know, if so, it's a relationship that certainly went full circle, you know, from what being on the outs with them.

Scott Benner 32:15
Yeah, you had a process happen within a process. So what I'm seeing Yeah, I mean,

Unknown Speaker 32:20
I think, I think that you don't,

Scott Benner 32:23
no one really considers, excuse me, I'm having a bad week from my throat. I, no one really considers that we don't really know very much about the human body, and how to just magically fix things like we I mean, the stuff we know, is amazing. And it's of course, you know, leaps and bounds above 1000 years ago, 500 years ago, 100 years ago. But you were, you were caught in that process that you were, you were diagnosed at a time where the doctor, let's be honest, was thinking, Oh, she'll be dead by the time she's, and he had a number already. Yeah. I'll just try to keep this lady's life as nice as possible. Until this kills her, which it's going to do is what he was thinking, you're not thinking that because you're thinking, I want to stay alive. And, you know, how do I be healthy. And you also have that expectation, I realized in every generation of people I talked to in every decade of people, everyone imagines that what exists, is more magical than what it really is, or that it's more immediate, or how we want healthcare to be like, I take a pill, and then I'm better. Or I take a nap. And when I wake up, I feel better. Like everyone wants that. It takes you a while to realize that we're just, we're just in a star map size, race, with discovery about medicine. And we're really very early on in it. I think it's amazing to listen to you talk about the process that you went through. And it's likely a testament to your stubbornness and desire to be okay, and willingness to I didn't want to say reach out God, I don't want to say think outside of the box was the only thing in my head. But

Karen 34:13
you you'd ever say that to a woman?

Unknown Speaker 34:16
No, we shouldn't your ability

Scott Benner 34:17
to look at like, well, this is what this is, what the standard idea is. But let's look on the fringes of that and see what else exists.

Karen 34:26
Yeah, because everybody think I know as a yoga teacher, and we tell this to our students all the time, you know, your body is everybody's body is different. And your own body is different every single day, you know, so there is no we can't boil it all down to being mechanical organism. You know, it's like it's not and sometimes, you know, we we tend to go towards the health is more a measure of balance of a bunch of things rather than taking a pill and you're gonna be better. You know, maybe you need to balance out some other things in your life that are affecting this, uh, you don't realize, you know,

Unknown Speaker 35:10
I think of health. The way I think of

Scott Benner 35:13
my brother's behavior when we were children, my youngest brother Rob, I don't know if I've ever shouted him out before, but there were two states of Rob, Rob was either in trouble. And you could see it, or he was getting in trouble, and you hadn't found out about it yet. And I think that way about health, like, you know, you look around and you think, Well, you know, my family has autoimmune issues. Nobody else has these troubles. Like, you know, look, there's people walking around the grocery store, they don't worry about this. And the truth is, I think everyone to some degree is, is dealing with something, they're worried about something Yeah, some things are more obvious or more immediate or emergent, maybe, but the amount of people who look up and they're like, I'm 85, and nothing ever went wrong, this doesn't really happen. You know, that's not how it goes, and maybe you're not going to have and I still think you're going to have troubles. It's whether or not those troubles are impactful enough, that they change your life enough that you pay attention to them, I think is how I I'm coming to think of it as I'm trying to stand back. I don't know anybody that doesn't have something. Right. You know,

Karen 36:26
everybody has something, you know, so, people, you know, I remember, you know, back back when I was diagnosed, you know, there was always a saying about the women who, you know, were a little sickly, you know, or whatever, in a relationship, you know, it's like, it was like, Don't ever think of me as being sick. You know, I because I'm going to do a lot of things. And I did I mean, I was, my husband used to call me his prairie woman, because we, we burn wood to heat our house, and I split with wood with them all. You know, I'm out there for four hours in the summertime when I was off from work, and I'm splitting firewood, you know?

Unknown Speaker 37:10
Yeah. 100. Yeah. I don't think I wouldn't want

Scott Benner 37:14
anybody to think of anybody is like sickly. But you do look back at that time and realize that. I mean, just think about what we know. Now that probably we didn't know before, like, women could be tired all the time. And no one no one ever thought like, well, what if your periods heavy and your iron slow? Like, right, like, right, they would tell you what, eat a piece of liver? Will? That'll help my 1314? Should I eat a piece of liver that should just fix it? Right? We're taking these iron tablets that then cause incredible constipation. So you can't you can't take them anyway. And nausea. Or, you know, you know, you know, Patti up the street. She's, you know, how she is like, what does that mean? Exactly? Like, what does it mean? Yeah, what is it means her hormones are all over the place. And you're just calling her nasty? Like, right? Like, it's not something she can, can do something about and hormonal imbalances are still not something that we particularly understand how to impact very well. Sorry.

Karen 38:14
But you notice, like, a lot of those things were always centered around women of color, you know, you know, it's like, the little woman or whatever, you know, it's like I died, you know, my mother in law. God rest her soul. She and she was an absolute saint. But Schuster, after I was diagnosed, you should always go, Well, you shouldn't rest here. You should. Like, you know, no, I need to have activity to balance out when a meeting, right? Like you don't understand how this works.

Scott Benner 38:42
She wants you to be Scarlett O'Hara, right? Yes. Oh, I'm, I've got the vapors. Let me sit down. Even what does that even mean?

Karen 38:50
Somebody make me a drapery dress.

Unknown Speaker 38:53
And that's really only

Scott Benner 38:55
that's really only you know, what, 70 100 years ago were like, you know, oh, they have the vapors, let them sit down or she's hysterical. Like that was a real diagnosis.

Karen 39:08
Right? Well, you still hear that today? Sometimes. You know,

Scott Benner 39:11
it's amazing. To me. It's

Unknown Speaker 39:13
amazing. Now men,

Scott Benner 39:14
you know, you know if we're if we're if we act crazy. I don't know. Everybody just seems to be like, that's fine. I don't understand at all. You know, it's

Karen 39:26
not good. You're entitled to do that. Apparently,

Scott Benner 39:29
I'm allowed to feel any way I want your history is what

Karen 39:32
I've learned. That's right. Your historical Yeah. Well, so

Unknown Speaker 39:35
yeah, it just,

Scott Benner 39:36
I mean, listen, Modern medicine has saved everybody. It's been on this podcast. It's good saving people I love it's helping me I just had again after thinking it wasn't going to be a problem anymore. I just realized a few weeks ago that my iron got low again. Again. Yeah. And so I I was just like, I gotten bitten by something. I like a little bump on my hand. And it kind of started to get systematic. It spread around my hand a little bit. It kind of left in my other hand, I was like, What is going on? And I was I started getting really tired in the afternoon, I thought what bit me that I'm falling asleep at two o'clock like that. Oh, odd. And so I thought, Oh, it'll go away. Yeah, and I went to I went to urgent care, and they jacked me up with a steroid pack. So for 10 days, I felt like Superman, because I don't know what's in those steroid packs. But I was like, Yeah, everything's okay. And it solved the problem. Soon as the steroid pack tapered off, the bumps on my hands would go away, but I was still tired.

Karen 40:38
Oh, and you have to go back to the hospital for infusion. I

Scott Benner 40:41
just got my second infusion yesterday. Yeah, so I had one a week ago, and I had one yesterday, and I already feel a million times better. But then I started going back and looking over the past month or so before I felt tired. And we found ourselves, I'll probably be able to talk about this at some point in the podcast. But for now, we found ourselves in a doctor's office where Artin needed to be seen by a new doctor. And they made the appointment, we set it up, we got there filled out all the paperwork waited. And then they called me over to the to the table and they say, Hey, she's not 18. And I said, yeah, no. And they're like, we don't see people under 18 here. And I said, when I called I said to the I said to the person on the phone, I'm calling from my daughter, because she's a minor. And then they set all this up, then she's Yeah, we're really sorry. Well, Arden was having a real problem. And anytime, like she needed to be seen, so we could figure something out. So we could make an adjustment for something. And they said, Well, we can see her after she's 18, which was like six weeks later. And I said, well, she's going to be in pain every day for six weeks while you're figuring while you're waiting for it to be a team. And something happened inside of me. And I was unreasonable for the next five minutes in that doctor's office, like I pushed, and I was, I was combative. And I did not accept one of their answers, even after I realized, these people are powerless in this situation. Like, there's not a decision maker here. Like I really pushed back to the point where we got outside and Arden was like, I was not comfortable with that. And I'm like, what? And like, I just thought I was defending her.

Karen 42:21
You were Papa Bear.

Scott Benner 42:22
You know, what I was? Was I was in that situation with a low iron. Yeah. So we found ourselves back there two days ago. And the first thing I said to them was, hey, look, I'm really very sorry, I'm still pissed that you set up this appointment, when she wasn't 18 and then said, Oh, we can't do this. But my reaction was not anywhere near what it would have been if my iron wasn't low. And so I see that and then I think about people with thyroid issues. And are they okay, are their thyroids handled? Well, people with their blood sugars, are they okay? And, and then that's just the stuff you can see outwardly, what about right? People who are going to find out their eyes are going to go crazy. 10 years from now? And yeah, etc. So, anyway, you, you I'm sorry, talking for like, a half an hour? Oh, that's fine, longer, but you, you really did want to come on to talk about, like advocating for yourself?

Karen 43:18
Exactly. You know, because I, you still see, I'm one of the podcast followers, and I'm in the Facebook group, and you still see people saying, well, you know, there's something wrong and, and, you know, we don't see the endo for three months, you know, and I wouldn't be here. If, if I didn't advocate for myself, if I didn't, you know, if I wasn't brave enough to take a step. You know, it's like, I really didn't have a lot to lose, but, you know, and I would say to those, those people, and I know, you know, most of them are parents, and it's, it's scarier when it's someone else other than yourself. But even if it's, if you think something needs to be changed, you don't have to make a big change, you can start small and see if it has some has some benefit, you know, so you know, you're not going to like, switch to a whole nother insulin like I did or something like that. But, you know, if you if you can see that there's something happening. You know, don't, don't wait for somebody else to tell you and give you permission, that it's okay to try something different. You know, I mean, you can make small steps that aren't going to be risky. And then see where see where you go. And if it works, then you could go a little farther, you know, and by the time you get to the end domains, you won't need them. By the time you get to the end knows and you can you know, really work it out in detail because

Unknown Speaker 44:54
you might be

Scott Benner 44:55
being told something by a person like going all the way back to your diagnosis is just like go, wow, I didn't know what those numbers meant, like that person was telling you what to do for four years. Isn't that unbelievable? No, it's not. I wish it was Karen. But it is. I mean, even this thing with Arden, which I'll have to talk around from him, because it doesn't have a resolution yet, and I don't want to have tell a story. But we had to track down to different doctors on our own, that were more integrative outside of the box thinking, to go through a host of things and check them off go. It's not that it's not that it's not that it's not that to get down to it's probably this. And this is probably impacting this other thing. So now we think we have one problem that's feeding a different problem. And we needed a test to check on the secondary problem. Now, this person, not an outside of the box thinker, we just needed them to do the thing. They did the thing, we got the information we needed. But if I would have left there with what that doctor said, then the answer would have been, hey, this is bad luck. And here's some medication. And this is gonna be your whole life. But now taking the information that we got from this from the first doctor, we see how the thing that she found is probably causing the thing. The second thing. And so if we fix the first thing, it should fix the second thing. But a regular old doctor, they don't think that way. They know he knows the thing he does, it's, I mean, it's like it's like having a guy come out and put a fence up around your property. And while he's there, ask him about the plumbing. Yeah, he just doesn't know. He can put the fence in, he'll do a great job with the fence, you need a fence or he's a fencer. Beautiful fence. This doctor was great at what he did. He was lovely. He was helpful. He was extraordinary what he did, but then to ask him what to do with the information you should take, you should take a pill. That was all. So you just learned to live with it. It's going to be bad. Take a pill, the other person was like, I think if we do this, this and this, it'll clear that up. I mean, fascinating. So So I kept thinking and I said to I mean, I've been talking to Jenny about I've been talking to my wife about it privately. What do most people do in these situations?

Karen 47:17
Unfortunately, they do just what the doctor says. They don't even they don't think beyond that. You know, but I

Scott Benner 47:23
chose to do that though. Because I'm sure a doctor said something to me in my life that if I just listened to I be okay. How do I know the difference between and you know the difference? Because your outcomes, except what if your outcomes are happening so slowly, you can't see them as you degrade. Like me yelling at a doctor because my iron is low. I didn't know my arm was low that day. I had no idea. It took me six more weeks, I actually think had the bug not bit me. My iron. I was like teetering. But something about getting sick, crashed me the rest of the way. And then I could recognize the symptom. Yeah. And then my wife said to me, I told you, you were being bitchy like three weeks ago, and you didn't listen to?

Karen 48:02
I was like, yeah, sorry. And we know what bitchie sounds like.

Scott Benner 48:06
You don't know what it sounds like from me, you think of me is like the nice guy on the podcast?

Karen 48:12
Yeah. Well, the thing is, is that, you know, people have this I don't know what the word is complex about doctors, the god complex about doctors, you know, like they, they're the be all end all they know what they're doing. But the fact of the matter is, you know your body better than anybody else does. And you have to be your own doctor every day of the diabetes. You know, so

Scott Benner 48:45
we you have to be involved Karen in no matter what it is, I'm telling you last week, my son has a little car that we we set him up with to go to college is a lease, I'm telling you, if it cost me six grand to lease this car for three years, do you know what I mean? Like it was yeah, it was just a little car, and the lease ends. And because of the state of everything right now, finding other cars was like difficult. So we said, Well, why don't we just buy this car. And so I had to go to the dealership where we leased it from and I said, Look, we're just going to like get a loan and buy it. I don't think I'm going to keep it very long. So I was like, I'm just gonna do this. And it was that amount of money it was for it was 14,000 $14,000 on the car. It's what it was going to cost to buy the car. And we go in to sign the paperwork for the loan. And the guy just we walk in, he starts chatting us up and everything and you're just talking and we're going along and he says something about so you're going to get the loan you're getting GAP insurance, you're getting this he said a bunch of things. And I remember thinking at first thing, what do I need GAP insurance for? I was like, first of all with the state of the world. The car costs 14 grand it's worth $24,000 Because nobody can lay their hands on cars. I could literally sell it today for $24,000 If I wanted to I'm like, why don't I need GAP insurance? That's like a thing for, like, that's an old timey thing for at least. And I thought, well, if it comes with it, who cares? You don't I mean, and then we're going along and blah, blah, blah. And a minute later, he

Unknown Speaker 50:10
turned the paperwork around, assign it. And I looked down, and I was like, wait, I'm like, Stop, like, How much money are we financing? And he goes, and he looks at it, and he says, $22,000, and I was what, I only owe 14 grand on the cars, like what is happening right now. And he starts telling me how the GAP Insurance is $4,000. And the, and the other thing that he mentioned was $2,000. And this was the and I went, Whoa, man. Do I have to get the GAP Insurance is no, you don't want it? And I went, No. And he goes, okay. And he looked, he looked at me, like, caught me. And I was five sec, because I just like it was a simple thing with me. You know what I mean? Like 14 grands a lot of money. But it's not when you're buying a car and you're stretching it out over 1000 years. It's a couple 100 bucks, you know, and so I'm like, just trying to get this done brutally hot day outside. I just want to go home. And had I not stopped and just look through it. I almost signed paperwork where I was just basically financing me giving the car dealership, seven grand. Wow. And I tell you that because I think that's the same thing that happens to people in doctors offices. I think you just go okay, what, okay, okay, okay. Okay. And then you don't ever stop and think about like, well, is this right? Like, is this going to fix my problem? Or if they say something you don't know about? Like, I gotta go take some time to research this. Let's find out what it was. So like, I actually have to find out. Is this what they said it was?

Scott Benner 51:47
Why are they given me this pill? What does he really know, etc. And listen, as I say that, it's a lot. And it's a pressure. And I wish I didn't live with it. And I know why some people just put their head down and sign the papers. Because there are days, I don't know how, like, we left that doctor's office yesterday. And, and I had a moment where I was like, Oh, God, like, this is so much like this is always happening. You know what I mean? Like I just, but what's the alternative? And the alternative is we pretend that that pill was the answer. And we let Arden live in, you know, some sort of pain for the rest of her life. And I'm like, I'm not, I'm not doing that. And so I told her afterwards, because she looked jected and I said, Arden, we're gonna figure this out, or I am going to die trying. I was like, I am not going to stop just so you know, I'm like, we are going to get this straight. And I don't even think she believes that at this point. But there is going to be a day where we get it all balanced out. And and I'm going to feel accomplished. I don't know how to I can't put that on my resume, I guess but it's going to feel like a big part of my life's accomplishments.

Karen 53:00
For Kim, she's she's been through so much fibroid and everything else. You guys

Scott Benner 53:05
all have been through so much. So it's not her

Karen 53:08
now I'm now I'm trying to get somebody to believe me about thyroid because my PCP you know, is one of those well, your, your test results are normal, you know, and actually, the new endo said the same thing to me. But I did advocate and get I said, look, it's not gonna hurt me to try since or I you know, I said, But I'm, I'm exhausted all the time. I'm gaining weight for no reason. I mean, I worked my brains out, you know, and, you know, you know, my nails are

Unknown Speaker 53:43
just what was the TSH they said was okay. It was

Karen 53:47
it was one point something I don't know. It wasn't it wasn't very high. Yeah. But I I still had all those symptoms, because well, it could be something else. Let's find out what what else it is because I can't live like this.

Scott Benner 54:01
Yeah, well, there's also there's also things right, there's other things that could impact that number and make it look lower than it is I can't off the top of my head. I'm not thinking of it right now. And if it's not that, did you have your iron tested?

Karen 54:15
Yeah, my iron is is low too. So she's got me on iron. But yeah, because I don't eat red. I don't eat red meat. Right. You know, but I I eat all the other things that have iron in it too. How do you know I know I cannot chop my head. You should for it to say low.

Scott Benner 54:35
I'll tell you right now the the infusions if your insurance will cover them, they are about the closest I've come to magical in my entire life. So I like I drugged myself to that first one. Like I was like, I sat down like the girls like I can't find them. And I'm like I said, or here's what I said. I don't care, cut my arm open and dump it in the cut. I said, I said shove the bag up my ass if you have to. I don't care how you get there. Same there was like, just do it, you know? And so she puts it in. And it's not an immediate thing. It's not like you're not like, wow. But in five hours or so my body started functioning better. So I was, I started to retain water. Yeah. So once the iron infusion was then I started paying regularly, which I was like, Oh, great, this is good, thank you. And then slowly over a week, my tiredness that used to be I was getting to the point where no matter how late I slept, I was tired by one o'clock. That's where it got to. And then I couldn't walk up and down the stairs anymore, because I'd get out of breath. And so like, all that stuff is slowly getting better. But what you're really waiting for, now that all that iron or whatever the hell's in that bag, I honestly don't care what it is, it looks like rusty water, and I wouldn't drank it if they told me to. And once it gets in there, and your body remakes, the cells, it rebuilds, when it makes your next round of red blood cells, it makes it with the proper amount of iron, and then, and then the cells can hold the oxygen properly, and then you're not tired, and then you can run up and down the stairs again, and

Karen 56:08
stuff. So the biggest, most noticeable symptom that I had, and I still have is I've had marking loss of strength in my arms. And, you know, so they sent me to a neurologist, you know, because they thought, Well, maybe it's neuropathy related, you know, and all that jazz. So, there was nothing there. I mean, they did all kinds of tests on it, and it had nothing to do with neuropathy. But, you know, still, I'm not as I'm a little bit stronger than I had been. But I still haven't gained all the strength back, which is a little disconcerting to me, you know,

Scott Benner 56:44
you need to get down with that infusion. Because I tried to get a bucket of balls out of a trunk. The other day I looked at my son was like, You're gonna have to get that, like, get in that class ridiculous. And now, two weeks later, but that's okay. Again, like we there was a moment where my son and I were throwing, and I had to I said, I said, we got to stop. And he said, why I said, my arms not moving as quickly as my brain wants it to to catch the ball. And there's like a, you were throwing at me way too hard for me to miss the ball. So like, like, like, I doors a day where I was like, I can't do this. And you know, and now we did it again yesterday, and I felt much better. But we were, we were at a point where if I took like, a three or four quick steps, I was like standing out there going. Like, I couldn't catch my breath. And just with that infusion, it just starts to go away. It's really something else.

Karen 57:33
Do they have any idea? What causes the lack of iron in your care system?

Scott Benner 57:39
I so I don't know if it's not being absorbed if I'm not eating well, and it's a slow drift away? Or if God Karen, you're gonna make me say something I've never said on the podcast before.

Unknown Speaker 57:51
I don't know if I want to say this. It could be first, how God can. Go ahead.

Scott Benner 58:00
Go ahead. Listen, you don't know how many people we're talking to. I'm the only one who knows how many people are gonna hear this. Okay. So

Karen 58:09
I have a good idea. Because I listen to every single one. It could

Scott Benner 58:13
be from like a hemorrhoid. I could be I could be losing blood that way. Because I go through bouts with with one. And so I'm thinking about doing trying to do something about it. But I've done in the past. And the old methods didn't work very well, and were unpleasant. And it's not. It's not constant. It's just sort of like it'll happen. And then it takes a few days to get it under control. And then you know, it. I don't know, maybe it happens more frequently than I recall. And maybe between that, and I don't know, I do have Berets. So I don't know if I'm absorbing things exactly, as well as I should be. Anyway, I got away from taking my iron supplement, because I felt so good. And I was like I'm doing great. And then I think it drifted down. And then your body function just kind of like everything gets washed wacky. So like, nothing starts working the way I expect it to. And then it snowballs. So it's like every other health issue, honestly,

Karen 59:11
when one of our relatives actually had to have an operation for him. Right. Yeah, you know, and it helped him a lot. You know, I don't know exactly what they do. You know,

Scott Benner 59:23
well, I saw an ad for the other day where they're like, We that it's like done differently now. And I was like, it was at a gastro that I trusted and I thought like, am I gonna call them? I guess I am. Because I don't want to yell at another lady. I'm yelling at a woman in June because I bled and like, I don't know April, you know, maybe like it seems unfair. But But uh, but I I will look into it one more time. I did try it when I was younger and all I can tell you was it was incredibly unpleasant and did not do much and yeah, yeah. So I'm just saying, I, what am I trying to say, Karen. I tried to say 15 years ago, I saw someone coming at me with a speculum, and I was like, Wait a minute. I don't think we should be doing this. But we did it anyway. And then about halfway home, I drove dry. Oh my god, this was 20 years ago. Coal was like, coal was little, he was two or three years old. And I was a stay at home dad. So I did it in the middle of the day, because I didn't think much of it. And boy, this episode took a turn. And then so I'm driving. So I'm driving home. And it's only a 15 minute ride. And halfway through the ride, I pulled over on the side of the road and just leaned over sideways in the car, because I could not sit down anymore. I was like, I'm like, I'm gonna cry in front of this kid. And I don't know how to get him home even like it was Yeah, so I finally what did I do? I think I took some sweatshirts or something and like, put them under my thighs, and like jammed my back up into the back of the seat and I basically hovered.

Karen 1:01:08
And why didn't they give you a donut pillow? Okay, and

Scott Benner 1:01:11
you're asking good questions. They told me it wasn't gonna hurt. And so either either I'm a big baby, or, you know, they never had it. So we got a we got home. And he was little I was like, Hey, buddy, I'm like, you just play here in the living room hang out with me. I'm gonna just lay on my guy called Kelly. She used to work in the city. And I was like, come home as quickly as you can.

Karen 1:01:36
So please come along, was the recovery

Scott Benner 1:01:40
wasn't bad after that. Like it was, you know, a day or two later, everything was okay. Again, even that, like no instruction about how to eat like, you

would think somebody might say, hey, like, why don't you stick with a liquid diet or soft foods or something like that? It was all just like, and it was only it was only 20 years ago? Yeah. I

mean, I'm just saying when you're asking people to know about your insulin, just remember. Yeah. It's not like I have 1000 hemorrhoids. It's one and they can't they can't bear it out. Nobody knows anything. Those doctors are laughing somewhere on their vacations.

Karen 1:02:14
Yeah. I don't know what what's causing my low wire, particularly because you know, I eat plenty of chicken and spinach and all that jazz. I don't think whether or not I include meet twice a week should make that much of a difference, you know? Because I plenty of everything else. But

Scott Benner 1:02:35
well, I mean, since Listen, since you made me say him right out loud. You know, you're screwed. I'm gonna ask you questions. So you must be through menopause, right? Oh, god. Yeah.

Karen 1:02:49
Yeah. I'll be 68 in November. I

Scott Benner 1:02:52
was gonna say I did the math earlier my head year. 67. So, but, I mean, it could have just be a lifetime of having periods. And then getting older and but you're you've you're saying you've had enough time to rebound?

Karen 1:03:06
Yeah, I've been Yeah, I've been past menopause for a long time. So you know, probably 12 years. You know, past past menopause. So

Unknown Speaker 1:03:15
is your b 12. Low to do they look at B 12 and magnesium.

Karen 1:03:22
I'm not I'm not sure. Yeah, those would be that'd be an avenue to check. Yeah, cuz

Scott Benner 1:03:27
absorption maybe. I mean, you know, I think people with autoimmune all live with more than their fair share of of inflammation, right? And inflammation happens everywhere. Maybe you're not absorbing the vitamins well anymore. Like who knows? Right? Oh, no, look at this mess. And once you get out of it, really.

Karen 1:03:48
But it's it's it's iron pills are really hard to take. Yeah, it's like I I tend to search around for a whole bunch of different ones before I find one that didn't make me nauseous all day. You know, it ended up being a plant based protein. Iron, so

Scott Benner 1:04:07
I don't know if it's plant based but Thorne makes really good supplements the comp Yeah. And I if I would have just I think if I would have just continued to take them away and I was only taking them like three times a week. But I was pairing it with an absorb ik acid and the iron tablet very easy on my system. I don't have any trouble with that. And I was doing okay. As a matter of fact, I had to cut down because I had been taking it more frequently and I got one follow up blood testing guys like Yo, man, your iron is way too high. And I was like cool. I figured this out. And then I had it back a little bit and then I got I don't want to call it lazy I think I just forgot. I think it stopped being a problem in my life and they just say stop take stop taking him and not on purpose. Not on purpose either. I just stopped taking them.

Karen 1:04:50
It wasn't in the front of your mind anymore.

Scott Benner 1:04:52
Yeah, yeah. Yeah, it was in the back.

God,

Karen 1:05:00
speaking of that, I could not be more grateful for cologuard Oh, God,

Scott Benner 1:05:08
well, even when my iron is really good, I don't have to take fiber. Yeah, I even noticed that I didn't realize like one of the things that bounced back quickly after the infusion, besides, I started urinating, like properly again, like, I wasn't retaining water was that my, my entire digestive system just started to work better? About five or six days into it? Yeah. And

Karen 1:05:31
because I have to take a lot of fiber because my, my digestion is fairly slow. Okay, you know, so if I, I take a lot of fiber, and it helps you get a tremendous amount

Unknown Speaker 1:05:42
to get a pain up high. From slow digestion?

Karen 1:05:47
No, no, no, it just takes, you know, to go through.

Scott Benner 1:05:52
Does that have you using more insulin? Do you think? Because it's so the food that's sitting in your stomach? It's just getting into your intestines and then not counting the rest of the Yeah, gotcha. It has.

Karen 1:06:05
I've seen it on on camera. So it's, it's shaped in kind of an interesting pattern. So I can see why it would take a little time for it to get out. But you know, I can't do colonoscopies anymore. They're just I don't get cleaned out enough for them to be too horrible. Oh, no kidding. Yeah. And the last time I had I had to prepare for when I passed out, and I fell backwards. We have a brick wall in our house. And I fell backwards against the brick wall. And I ended up with seven staples in my skull and a concussion. I said, I'm not doing that anymore. You can just give me cologuard.

Unknown Speaker 1:06:49
Can What did you mean? What do you mean, you're passed out?

Karen 1:06:51
I just don't know if it was just from the stuff you have to drink, or whatever it is. And I was on like a to a two day prep because I'm so slow of digestion. And I just, I just fainted twice that morning, once against the doorway, and then I fainted backwards and my husband's getting ready to take me to come down the bathroom. And there I am on the floor bleeding. No think we're getting there today.

Scott Benner 1:07:20
I've only had one of those so far. And I mean, as I drank that stuff, Kelly just like she sat across the room like half and heart and half laughing at me. And I just was like, I'll bleep it out. But I was like, fuck this. This tasted so bad. And I was like, trying to force it in.

Karen 1:07:39
And I'm like, oh, yeah, you have to use a straw. Use a straw. It's not as bad you get it down without noticing.

Scott Benner 1:07:47
You sound like me on a date when I was 18 There are ways to make this better for you. There's no good way to drink that stuff is terrible. No really was

Karen 1:08:01
in the darkness would never believe me when I said no, I drank the whole damn thing. You know.

Scott Benner 1:08:06
I'm still you didn't have the experience afterwards. Which by the way

Karen 1:08:10
is Yeah. Oh, I've had it before, but not recently.

Scott Benner 1:08:14
Yeah, I remember after living through the six or eight hours and then go into bed after I took it. I woke up in the morning and I was like, Well, the one thing I know for certain I won't have to do is use the bathroom like Yeah. And so we get there to the to the room and I get right up there put me on the gurney and she goes should just go to the bathroom one time and I was like, Lady listen. It's over. There's nothing inside. She was just try. And I was like, Okay, it's like I have no urge. She goes, you wouldn't have an urge. She was just try and I was like, Okay, I went in like came back. I was like, Oh my God, how did you know?

Karen 1:08:48
She was I've been blocked

Scott Benner 1:08:51
is my job. Trust me. And I was like, Wow, that's crazy. And then an hour later, I was saying inappropriate things coming out of anesthesia. So it was perfect. Yeah.

Karen 1:08:59
All right. Well, the anesthesia is the best part of that.

Scott Benner 1:09:03
I really do like that. The Jackson juice. It's nice. Yeah. And I feel bad. He's dead and off. But I mean, I don't know. Are we supposed to feel bad that Michael Jackson said I forget. I'm not sure anymore where we're culture stands on that stands. Yeah. But But I'll tell you what, man it it just turns your lights out is really something you wake up like you're almost reset. You know, like the next two days after like, I'm just like, I feel a mixing

Karen 1:09:35
yourself up a little

Scott Benner 1:09:36
that I ended up telling people like this is gotta be why Michael Jackson was doing that. So it's like it really? It's unreal. Anyway, don't don't don't do that. I mean, I don't know if any of us have enough money to pay an anesthesiologist to come over to the house every day. Probably don't. I ended up in jail, didn't he? Karen? Yeah, I think so. Turns out you can't do that. Yeah, kudu turns out you can't kill Michael Jack. Some that's gonna put you in jail,

Karen 1:10:02
can't kill a celebrity and not go to jail.

Scott Benner 1:10:05
Kill regular people. Yeah, just not people against saying that. That's it.

Karen 1:10:09
I think he, I think he probably wasn't really in his right mind at that point anyway. I mean, Michael Jackson Yeah.

Scott Benner 1:10:15
Well, I think what we talked about today was like, I think we I feel like we talked about the sin of complacency. Just not of just saying this is okay. This is good enough.

Karen 1:10:30
I mean, it's your life, you know? You have to direct it. Yeah.

Scott Benner 1:10:35
Yeah, that's, it's very true. And if you can't make sense of what you're seeing, I always say follow your gut, right? Like, if what's happening doesn't make sense, or it's not resolving correctly. And you can't make better sense of it for yourself, that's when you have to go find other people to help you. Right? You just don't go asking like, you know, go find someone else. What am I trying to say? Like, don't find other people who are on your level, right? Like, right, like I do, I do the very same thing, I figured out as much as I can. And stuff I can't figure out, I find somebody who knows more about than I do, and I go talk to them.

Karen 1:11:14
You know, people are always making fun of, you know, Google and all that stuff. But one thing I will say about the internet is, even if it everything on there isn't necessarily applying to you, at least you have the ability to ask the right question. After you have some information here, and it may not apply to you. And it may be it does. But it really can help you zero down on what you need to be spending your time at the doctor's office discussing.

Scott Benner 1:11:46
It's not easy. I'm not gonna say it's actually very frustrating. And you could, I mean, look at you, you're having trouble getting somebody to help you with being exhausted, right? Like that shouldn't that shouldn't be a heavy lift for you to get figured out. And yet you're, you're always going to end up in the situation that we were in where the doctor is like, look, this is what I do. This, I'm not thinking about this any farther than this. I saw x I saw y. So Z, and I'm telling you right now it's this and it's that pill and that's it and I don't I'm out, like I'm not gonna sit down and Dr. House this with you, this is not do. So you do have to, sometimes you have to come up with an answer, like you did with the meter that is so concrete, that when it's held in front of somebody, it's undeniable. And they have to go Hmm, okay, well, maybe you do need an iron infusion. Or maybe we should look at your thyroid closer or, you know, let's try this. Because I mean, the alternative, like in the case of your of your situation currently, like maybe maybe you don't need Synthroid, but it would really only take a week to find out. Right, you know,

Karen 1:12:53
right. And they have me on a low level of it right now. And it has helped me some. So I know it's working. In the beginning, it didn't really seem to be doing anything in the darkness, as we'll see. And as I swab, what am I supposed to be taking it and I was not taking it by itself. I was taking it with my breakfast, you know, so now take it in the middle of the night now. Because I'm not waiting for my coffee. I'm telling you that I

Scott Benner 1:13:22
have a great I have a great episode about it. If you haven't heard it.

Karen 1:13:26
I'm sure I'm sure I must. Many I've missed

Scott Benner 1:13:31
so we're gonna we're gonna button up here and get done because we've been talking for a while but and I actually have to go are you heading off to college soon? And she tells me she needs a computer. So I'm gonna go spend a bunch of money today.

Karen 1:13:42
Yeah, I saw the picture of her. You posted the other day. What a beautiful girl. Oh,

Scott Benner 1:13:46
thank you. I made it. I made her myself. Kelly had nothing to do with it. Really?

Karen 1:13:52
What was she? What was she dressed up?

Scott Benner 1:13:54
That was her senior prom? Yeah, she looked really great. She did. That was an interest. She

Karen 1:13:59
really did. She looks absolutely stunning.

Scott Benner 1:14:01
She's got that kind of. She's pretty in a different way. I don't know if that makes sense or not. But she doesn't. Like she doesn't look like many people that you know.

Karen 1:14:13
She happy that you didn't just only post pictures of her when she was little.

Scott Benner 1:14:18
Um, like I said, I'm gonna wish you a happy birthday online. I'm going to use this photo of when you were a little and you can tell me which other picture to use. She's like.

Karen 1:14:28
So she's good choice.

Scott Benner 1:14:30
She was happy with it. She actually went through and read everybody's wishes. And there were hundreds of them too. And she spent that she sat down very like kind of like nicely and, and she said thank you. I'll make sure you thank everybody. And I was like, okay, she's like, because I'm not going to like I know you're not going to go on Facebook and thank hundreds of people. I was like, I'll take care of it. Don't worry.

Karen 1:14:52
I gonna be able to convince her to come back on.

Scott Benner 1:14:55
I think so. Yeah, I do. Just trying to get her into a spot where she's In the right, mindset, sorry to mind yeah, yeah. So we'll say, I really do want to talk to her one time before she goes to school, which is coming up now in. Oh, geez. Maybe seven weeks. She's gonna leave.

Karen 1:15:16
How are you feeling about the separation? Very upset. So yeah.

Scott Benner 1:15:22
I don't, I don't I've been thinking about it in different like planes of existence. I've been thinking about the diabetes stuff. I've just been thinking about the part where she's just not going to be here. You know, and hanging around like she and I, our personalities are very similar. So, you know, we spend a fair amount of time bullshitting together and stuff like that. So,

Karen 1:15:45
yeah, who you gotta bounce off. And she's not

Scott Benner 1:15:48
assuming Kelly's gonna shoot me within days after her. That's what I'm thinking. I'm pretty sure about that. So, but I don't know, and she's gonna go a great distance, which is unsettling. And then of course, you know, the idea of overnights like, you know, I mean, you can be as good at diabetes as you want. There's still like, if you don't think that, you know, we're not, you know, Arden's not drinking juice, sometimes at four o'clock in the morning, like, you know, she is, and so, still variables. So yeah, and everything's gonna change. Plus, she's been taking new stuff that we think might change her insulin sensitivity, and it's all happening as this is happening. And you're like, Oh, God, but there's no good time, like, you know, so I'm sure it's gonna be fine. It's gonna be fine. Because of, I mean, because of algorithms, and because of Dexcom. And, you know, because we can call each other and that stuff's all going to, you know, make it better. But, you know, I have seen seizures in my time. So I'm not unaware, I'm not unaware of them. And

Karen 1:16:56
I wanted to make sure that I said to you, before we close that, you know, I had said how the book really changed my life. And you really changed my life since then. Because I never 45 years never heard of Pre-Bolus We were always told Bolus right before you eat, you know. And, you know, so many things that I've learned from the podcast, and I go back and look at them again, and again, and again. Like, I'm still dabbling with fat and protein. But you know, your information, and your delivery has really made a big difference in my life since since I started listening.

Scott Benner 1:17:42
Karen, if you're trying to make me cry at the end, I'll do it for you. Because you're gonna cry. I'm gonna cry. Yeah. Luckily, we said hemorrhoid earlier. So I don't think I can. I can't get all the way to here today. I don't think although I'm gonna cry later, when I realized I said that on this podcast.

Karen 1:18:01
You have you have the edit button?

Scott Benner 1:18:04
I don't know. I don't edit anything out of this thing. Yeah, that's my detriment sometimes.

Karen 1:18:08
But it really, you know, even to an old, an old hand 45 year veteran, you know, you still had a big impact on my management and my control today. So

Scott Benner 1:18:21
I hear you, I'm more important than your husband, your life. Is that which that's true. That's true.

Karen 1:18:24
And he's really sick and listened to me talk about?

Scott Benner 1:18:31
Well, well, I mean, I don't know, I don't know what to say to that. Except Thank you. And, um, I'm very happy that it's valuable for you,

Karen 1:18:40
I wouldn't have known about Dexcom, I wouldn't have known about G voc, I wouldn't have known that it was really overdue time to switch to T slim from where I was before, if it wasn't for the podcast. And it's really made a huge difference in my life and my husband's life.

Scott Benner 1:18:58
So I'm very, I'm super happy for you. And I'm glad that if I had anything to do with that, I'm also hearing that I don't charge enough for the ads. So that's true. So I'm gonna check up the ad price for next year.

Karen 1:19:11
I think you have to

Scott Benner 1:19:12
sell and stuff like crazy over here, you know? That's right. Well, I mean, listen, it really struck me during your conversation that that book was somehow the podcast for you back then. Like, exactly, you know what I mean? Like, it's just, it's this other information, where you can get away from your doctor and get outside of the bubble and say, Well, that makes sense to me. Or, you know what, I don't like that part. But like, you know, because I don't think you know, I'm not under some delusion that everyone's managing it exactly the way I would. I just think we all talk about it, and then you take from it, what's best for you and make your own adjustments?

Karen 1:19:50
You know, we're all doing better in one way or another, you know,

Scott Benner 1:19:54
I have to say, it's, it's, um, I don't know. I don't know what to say even The other day, I said something, Jenny checked on me because my iron was low. And she she texted me in the middle of the day. And she said, Hey, are you okay? And I said, Yes. And later I said, I appreciate you checking on me. And she said, Well, someone should check on you look at all the people you're helping. And I and I really, honestly, I don't I mean, I don't think of it that way day to day, you know, so day to day, I'm having conversations and editing conversations and putting them up. And sometimes I step back. And I think, like this thing is, it's important for people who use insulin. And I didn't mean for it to be like this. Like, I didn't expect this to happen, but it did. And so now it seems like, it almost seems like a public trust at some points. And

Karen 1:20:49
exactly that exactly. That. And all of us feel that way. Well, that's, you know,

Scott Benner 1:20:55
thank you. There's three reviews. I don't think those people feel that like me at all.

Karen 1:21:03
But you probably never really listened.

Scott Benner 1:21:06
They would like me if they met me. Yeah, that's true. Or my wife would say, we're probably not.

Unknown Speaker 1:21:12
But I just think that

Scott Benner 1:21:16
Listen, I'm not the first person to talk to people who have diabetes, I'm not the first person to say stuff out loud about how they manage, I think I might be the first person who found a way to scale it. Like to really scale it, not just like, you know, I mean, there's some popular blogs out there in the day. But they don't hit numbers like this. And I'm glad for other people who are doing the same thing. But the truth is, best I can tell. You could take all the other podcasts that have to do with diabetes and add them up. And they might not reach as many people as this thing does. So like there's something there's something about, about scale, because scale creates a movement. Right? And it's not something you can see, like I'm pretty much the only one that can feel it because I'm centralized to touching people. But now that the Facebook page is so big, I think if you're in there, you can see it too.

Karen 1:22:12
And it's it's been truly the key for so many people. Yeah, really unlocked all that knowledge, all that all the possibilities, you know, really gave our lives possibilities. Well,

Scott Benner 1:22:25
listen, I'm all of you. I just was another last person who was trying to figure out what to do about diabetes, really, I was just trying to figure it out. And then honestly, I just started talking about a long line because I was trying to raise money for the JDRF. And then it just grew from there. And the focus changed. And then technology changed, which is really, which is really the big benefit of this. I mean, honestly, I think I just got to it first. I mean, I think I'm good at it. But I think I also got to it first.

Karen 1:22:59
I think the availability of having it as a podcast is is really invaluable. And actually, I had never listened to a podcast until I got hearing aids, you know, and then it was like, oh, Dingo books on tape. And podcasts I can listen to right through my hearing aids, you know, and you go everywhere with me, you know, you're always in my back pocket someplace, I'm out the garden, you know?

Scott Benner 1:23:24
Well, now I'm smiling. That's nice cam before you made me cry, now I smile. Well, you're very kind to say that, and I appreciate it very much, and

Karen 1:23:33
makes it easy to get the information, you know, for it to be so available. Cuz I'm gonna be so available.

Scott Benner 1:23:40
I'm delightful. Really? That's what it is. That's true. That's true. Well, listen, Karen, you're you're very nice. I think maybe if I did, if I innovated anything, it was talking about diabetes in a way that was meant to be entertaining. Because no one wants to listen to that. Like, I mean, a dissertation on bolusing. Like, who's gonna sit through that crap? You know what I mean? Like, it just might be it's very important for you. But it's not something that people are going to purposefully be like, Yeah, sure. I'll put five hours into this over five weeks. And then you get the podcast big enough and popular enough. And then here comes the pro tips. And you think I like the other stuff. I'll try this. And then hopefully, the pro tips or even, you know, still entertaining enough that people will go oh, let me try another one and then hear your story or someone else's story. Because I think that's where, if I'm being honest, I think I think most of the benefit comes out of people's stories. Because ABS

Karen 1:24:40
Absolutely because as even for all the years that I've had diabetes, I only recently for the first time met a diabetic in the rat in the wild. No kidding. I'd never knew anybody else that had type one diabetes, you know, something, you know, people say Oh, well, my aunt has Type Two was not the same thing. You know?

Scott Benner 1:25:02
It took like all those never to miss all those years

Karen 1:25:05
never never encountered another person

Unknown Speaker 1:25:08
with type one that you knew about that I

Karen 1:25:10
knew of. Yeah. And I'm just very always out out front with mine, you know. So

Scott Benner 1:25:17
you think you would have you would have met somebody? You I know as long as they were willing to speak up about it. Yeah. Because you were right about it.

Karen 1:25:25
It was crazy. You know, it's like, and so the stories mean everything to me. They're like, my community that I never had. Right, you know? So well,

Scott Benner 1:25:33
I feel the same way. I really do this. But it's, you know, I still take crap from adults who are like you make a podcast, that's what you do. And even sometimes my kids are like, it's hard to tell people what you do. And I was like, I know, don't worry, like, because she's like, did

Karen 1:25:48
you say you're a diabetes consultant?

Scott Benner 1:25:51
Listen, I'm not that because nothing you hear on the Juicebox Podcast should be considered. etc

I want to thank Karen for coming on the show today and sharing her story. I want to thank touched by type one, and remind you to go to touched by type one.org. I'd also like to thank us med us med.com forward slash juice box get your free benefits check today. Prefer the phone that's fine. 888-721-1514 don't forget all you need to do to save 10% On your first month of therapy with better help is to use my link better help.com forward slash juicebox 10% off your first month. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

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