#1414 Great Flood

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Erin’s 10-year-old daughter, Kylee, was diagnosed with type 1 diabetes two years ago. Erin and her husband struggled with the diagnosis, asking, "Why us?"

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Scott Benner 0:00
Welcome back, friends. You are listening to the Juicebox Podcast.

Karen's daughter was diagnosed two years ago. Her and her husband struggled at first with the diagnosis, asking why them? Nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan. Don't forget, if you're a US resident who has type one, or is the caregiver of someone with type one, visit T, 1d exchange.org/juice box right now and complete that survey. It will take you 10 minutes to complete the survey, and that effort alone will help to move type one diabetes research forward. It will cost you nothing to help. Don't forget to save 40% off of your entire order at cozy earth.com. All you have to do is use the offer code Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com I know that Facebook has a bad reputation, but please give the private Facebook group for the Juicebox Podcast, a healthy once over Juicebox Podcast, type one diabetes. The group now has 47,000 members in it. It gets 150 new members a day. It is completely free, and at the very least, you can watch other people talk about diabetes. Did you know that, despite the increase in CGM use, only a third of people living with diabetes meet the recommended guidelines for healthy glycemic levels. Today's episode is sponsored by Medtronic diabetes. Learn more about hyperglycemia at Medtronic diabetes.com/hyper today's podcast is sponsored by us med us, med.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 us, med.com/juice box, or call, 888-721-1514,

Erin 2:11
well, my name is Erin, and I'm talking to you today because my daughter Kylie was diagnosed with diabetes type one, almost Exactly two years ago. How old is

Scott Benner 2:22
she now? She is 10, and she was diagnosed at eight.

Erin 2:27
So she was diagnosed actually two weeks after her ninth birthday.

Scott Benner 2:30
I see okay, and you are American, yes, you said the diabetes part. Like, do you ever do you know people who say the date backwards? Oh,

Erin 2:45
you did, yes. That's funny. I didn't even think about that you

Scott Benner 2:48
said. You said it like you were charting it. Does that make sense?

Erin 2:53
Probably, maybe my mind, I do kind of that chronological order, where I date things. It's really

Scott Benner 2:57
interesting. Yeah, diabetes type one. I was like, oh yes, this is, this is like a scene from Grey's Anatomy. This is very exciting. Okay, well, I

Erin 3:05
work in a dental field, so in my mind, that's kind of how I guess I classify things as well,

Scott Benner 3:10
very nice. Felt like I heard that that's all any other type one in the family, or other autoimmune stuff.

Erin 3:18
No. So she was a surprise to us. We had no we were blindsided. None of our family, okay, we asked all the family, and nobody in the media. We had a couple, maybe type twos, and like the great, my great, great grandparents, but nobody in the near family. My mother in law is adopted, and she does not know anything about her background, so there's a possibility there. But other than that, we we were completely blindsided.

Scott Benner 3:47
Got you I understand, okay, in hindsight. Now, when you look at your own health, do you see other autoimmune types of stuff like celiac or Hashimotos or stuff like that? No, no. Okay. How many other kids or no one could I

Erin 4:01
do? I have two. I have one other, and he's boy, and he's gonna be 13, and at the beginning of next year. So

Scott Benner 4:09
are you in like, like, your late 30s? I am. That was that upsetting to you. I don't

Erin 4:17
know if I'm ready for it. I just turned 39 and I'm like, okay, hitting those 40s.

Scott Benner 4:23
Just loved your response. You're like, I am. Yes, I How did you know I look so young in person,

Erin 4:30
right? Exactly? I was like, dang it, he guessed, you know.

Scott Benner 4:33
So we have a bit of a short window for you today, so I'm gonna do a little thing where I just kind of jump forward a little bit and ask you what it is that you were interested in coming on the podcast to talk about well, so

Erin 4:46
the reason why I kind of reached out to you was Kylie had it very interesting, and she had a lot of things happen to her very quickly, on top of her diabetes diagnosis. And I kind of want. To talk to you and in hindsight, now, after it being two years, I hope that what I can tell people gives them a little ray of hope in all aspects, because we did. We were in a huge slump for a while, our life got turned upside down. So having no idea that type one was even a possibility. My daughter all of a sudden, you know, she's playing softball. She's very, very active. All of a sudden, she is tired. She's exhausted. She's, you know, we are on her about, you know, why can't you focus? Why can't you do all these things that she normally, you know, would do? Because we were clueless, and we ended up having a flood in our house, which we have no idea how, why or what, but it took out her bedroom, it took out her bathroom, it took out the hallway, and that's how we found out we had no idea about any of the other symptoms. They weren't a thought process whatsoever. And she started going to the bathroom every 20 minutes after they, you know, pulled all the plumbing, pulled everything from our bathroom, and she was coming into our master bedroom, and every 20 minutes, I told my husband, I said, That's so strange. He said, You know, maybe she has a UTI. Maybe she has something, again, type one diabetes was not on our radar. So we finally got her a doctor's appointment. And the day of the doctor's appointment, we had to drive 45 minutes to get there. And the doctor is a good personal friend, and she took her blood sugar, and she's like, She's diabetic. We're like, I just cried because I was like, how? Like, How is this even possible, right? So in our area, we had two choices. She was like, you can either stay here in this town and go to the hospital here and they will fly you to one of the bigger cities. So I live in northern New Mexico. So my choice is either Denver or you drive back home 45 minutes, and then they're gonna fly you from your hospital to Albuquerque. So you need to decide, you know, where do you want to have her end appointments for the rest of her life, at least until she's 18? There was so much information. I was like, I'm doing what? Yeah. So we

Scott Benner 7:12
decided, am I flying to Denver Exactly? Yeah,

Erin 7:15
exactly. That's an eight hour drive for us. And I'm like, Oh, I don't you know that commitment is a big commitment. Albuquerque is three and a half hours. That's still a big commitment. We don't travel to Albuquerque very

Scott Benner 7:27
often. You don't at that point even understand, I would imagine, like, why is it i? Why can't you help me? Like, why am I going somewhere else? Right? This episode is sponsored by Medtronic diabetes, a company that's addressing hyperglycemia head on, Learn more at Medtronic diabetes.com/hyper and now we're going to hear from Medtronic champion Maddie. Hi.

Speaker 1 7:48
My name is Maddie Fisher. I was 12 years old when I was diagnosed. It was really, really hard through my adolescent stage. I hated diabetes. Sometimes I would cry and just say, like, Why me? And I think you know, just from hearing from people in the community that a lot of people have that very similar story. What did you find that helped? I was able to see all the latest technology that other type one diabetes, especially in the Medtronic champion community, were using, and I stumbled across the N pen. And this girl was using the N pen, I just messaged her tell me all about this. I called Medtronic, and the lady that I was talking to, she's like, Yeah, I totally understand.

Scott Benner 8:29
It feels like meeting more people helped you. Yeah,

Speaker 1 8:32
I definitely did. You know, I used to hide everything, and now I wear it with pride. What

Scott Benner 8:38
have you learned since you've been wearing your technology openly, there's great

Speaker 1 8:42
support. And then, you know, you have Medtronic who just elevates that support.

Scott Benner 8:47
Prolonged hyperglycemia can lead to serious health problems and long term complications. Learn more about hyperglycemia at Medtronic diabetes.com/hyper

Erin 8:58
Yeah. She was like, just, you know, there is absolutely no pediatric endocrinologist in this area. I was like, what like, how do we not have that hair? So we drove the 45 minutes back home, and my daughter's in the back seat just falling asleep, like she couldn't even keep her eyes open. Her blood sugar when we were at the doctors was 500 and so they sent us back. And by the time we got to our local hospital, you know, they had to go through all the protocol again, even though it just had a doctor called ahead, right? And they were like, it's not reading on our you know, machine. We need to do blood work. So we sat in the hospital for almost four hours with little to no information. Our hospital is a small, rural hospital, and next thing we know, they're like, we're we're sending you to Albuquerque. And we're like, okay? And they're like, well, she's in DK, so we need to send you guys like, now. So can

Scott Benner 9:55
I ask a question? Had you sat there long enough that you could have driven to Albuquerque? I. Yes, yeah, okay, oh

Erin 10:01
yeah. My husband was able to, as I sat in the hospital, he was able to come home from work, change his clothes, come to the hospital and hang out for another hour. And he he works about 45 minutes out. So we were very frustrated. We were like, you guys have any information? The nurse literally came in and was like, did the doctor tell you she's in? DK, we're like, no. Nobody's told us anything. They took her blood, they left. We really haven't got anything. So she was air flighted out, and we went to that hospital, and they were on it. Long story short, we were there for three days. We got a lot of information, and then, you know, sent home, and we've been working on it. Our endo has been very happy with everything that we've been doing her first appointment. So when she was diagnosed, she was at four teen point something on her a 1c is what they were averaging at the hospital. And then when we came back for her like, three month checkup, she was at 6.4

Scott Benner 11:00
when you look back, how long do you think this was going on for? Honestly,

Erin 11:03
to think about it this time frame, plus two years ago, just so we had, yeah, a family vacation around Fourth of July. She had an all star softball game that she was playing like this weekend two years ago. So we think it was at least probably four months by what they're estimating, the ANC, and just looking back at all the symptoms that she

Scott Benner 11:27
had first, that you saw along the way, when you can look back at it again, yes, and one of the

Erin 11:31
ones that I see and I process now that I really wonder about is she had a lot of abdominal pain months, Months before we noticed, you know, the thirst, the urination, all of that, I would guess, she would come in every night and be like, my stomach just hurts, and we're like, Well, do you need to use the restroom? You know, maybe you're eating things that are, you know, upsetting your stomach. And she would just be in knots. And then it would go away. And couple days later, same thing, and then it finally, it went away, and we didn't think much of it.

Scott Benner 12:04
Interesting. I wonder. I'm gonna think about that and do a little research while you're talking on the on the stomach pain idea, because people bring it up all the time, I never really dig into it. So, okay, so what is the impact on her? How does she respond to this? Oh, I mean,

Erin 12:20
she has been a trooper. She does so we're MDI. She's continued to be MDI. She does not want to pump. She does use a CGM. We did switch over to the g7 which she does really like due to the size of it. My daughter's only 72 pounds. She's very thin, very muscular. It slows her down. And when it slows her down, that's when she's like, I wish I didn't have diabetes. Oh,

Scott Benner 12:45
I see, yeah, does she talk about it? A lot.

Erin 12:49
She does, and she we've been very blessed. She is willing to talk to other people about it. We have to, you know, we want everybody to know, so that if we can't watch her or see her, hopefully something ever happened to her, they would be aware. She has some great friends at school that have known from the beginning, you know, and they're like, let's go to the nurse. You just are acting funny or, you know, yeah, they're very receptive. But she, she's really good about letting people know, and not being afraid to tell people about it, you know. And she's like, Yeah, I have diabetes. I

Scott Benner 13:25
wasn't sure when you first said. I thought when you said she was good at talking, she was open to talking to people about it. I thought you meant therapy, but you just meant, oh, friends in her life and stuff like that.

Erin 13:35
Yeah. Okay, yeah. Thankfully, as of right now, I don't see any mental like frustration or load or anything that would need therapy again, she's 10, maybe when those hormones kick in and all that, she might need some help, but no just speaking to people in general, or people asking her questions, you know, she does her injections in public, will look at her, you know. And if people ask, you know, she's like, I have diabetes, so she's, she's very vocal about it. Okay,

Scott Benner 14:05
do you How are you guys handling it? You're the rest of your family, your your other child, your husband, yourself.

Erin 14:11
My husband, curses every day about it. Wants to know why, why? Why her. I think I spent the first three months of this diagnosis, just in tears every night, you know, just streaming tears down my face, trying to figure out, like, why? How my son, he's done very well, but he definitely has told people, you know, my my sister is my parents favorite. And they're like, Well, why do you say that? You know, my mother in law quartered me one day, and she's like, just, you know, your son? Know, your son asked me why Kylie's your favorite? And she's like, and I told him, it's not that, you know she's their favorite. She just takes so much of their time. Some days it's really hard for him, but he takes it really well, and he's been, honestly, very awesome. And. The fact that he's picking up and learning and he's helping us when, you know, we have to go to work, and I need somebody with her for a short period of time.

Scott Benner 15:07
So it's interesting, is that that that would feel like favoritism when to your daughter, it feels like unwanted attention? Probably, I don't want to be doing this, you know? Yeah, and by the way, if something else, it would just be something else. In case you're wondering, you weren't going to get through parenting without the kid being upset about something. So you're fine. This is what it is. Yeah, I do think that no matter how well it seems, that everyone else is adjusting, and I'm sure everyone will adjust, but there's still impacts. Like, you can't just say, oh, there's no impacts. Oh, my son's 24 now, and he'll talk about, like, you know, you'd be on your way to do something. And then all of a sudden everything stopped. And then we stood there for 20 minutes, like, making sure Arden was Okay before we did something, or that kind of thing. And that obviously stuck with him, because he's older now, and he still remembers

Erin 15:59
it, you know, yeah, we do a lot of you know, my husband will tell my son today me and you are going to go out on the boat and go fishy like your mom has, Kylie me, and you're going to go spend time, and we're having to make a conscious effort to make sure that we spend time, which is horrible. It sounds horrible that you have to make a conscious effort just to spend time with one child, but we want him to know, especially now that he's mentioned it. It's not that, you know she's our favorite we tell her she's our favorite daughter, but you know he's our favorite son. That's just how it is.

Scott Benner 16:33
Well, you know what? If it wasn't this, it would have been softball or something else. You're always at softball, but you know, you would have just, trust me, does he play a sport. So he

Erin 16:41
has, he does. He's played baseball since he was little, but he's getting to that teen, teenage year where he's picking and choosing. So he plays soccer as well. So he does a little bit of everything, and then he loves to bass fish. So we try to get him out there doing that as well. Don't

Scott Benner 16:56
you live in a desert? Where is he bass fishing?

Erin 16:59
So I do live at a desert. We live in the high desert, technically. So we actually have a really nice, very large lake 45

Scott Benner 17:06
minutes from us. Oh, it's lovely. Yeah, I love that. The Great Flood is how you were able to figure out she had diabetes, just because it diverted her to another bathroom. That was all right, yeah, that is it. You were 100% correct. A kid was peeing a ton before, but you didn't. Hey, is there a chance she she flooded the she flooded the bathroom. Was that pea or water you saw going through the house? Oh,

Erin 17:26
oh, yeah. So we had the great flood, and then we had the tortilla incident, where she bit a tortilla and took one bite out of us. We had this little, teeny, tiny bite mark in it, and then the rest of it was floating in the toilet, in my toilet. And I was like, Kylie, did you eat a tortilla in the middle of the night? And she was like, No, we're like, What do you mean? No, we're like, this soggy piece of evidence that I have to, like, fish out of my toilet.

Scott Benner 17:50
She was that hungry during the middle of the night that she

Erin 17:53
Yes, and she didn't remember that she ate it. So she was coming to our room to go to the restroom. On top of it, she was stopping to get food, and then not remembering the food. And then I was like, I need to get her a doctor's appointment really fast. I don't understand this.

Scott Benner 18:07
She's sleep walking tortillas before we move on, Aaron, stomach pain prior to type one diagnosis can be due to several factors. This, of course, is from chat, G, P, T, 4.0 D, K is the serious complication of unrelated diabetes, but blah, blah, I don't think it was that in the because it happened so far. In the beginning, gastroparesis, probably not that I would think that she didn't have nerve damage from it, but high blood sugars, elevated glucose levels, can affect the digestive system, leading to abdominal pain and discomfort. And then the other eye possibilities for pancreatitis and an infection, but I bet you it's just the high blood sugars creating that problem. Yeah, that was kind of our thought process on that. Yeah, let me ask you another question about the time spent kind of crying and wondering why that happened to you, and you know, that kind of to your daughter, etc, you're never going to come to an answer. So is that a thing you give away at some point, or do you still mull it over? I have always disliked ordering diabetes supplies. I'm guessing you have as well. It hasn't been a problem for us for the last few years, though, because we began using us Med, you can too us med.com/juice, box, or call 888-721-1514, to get your free benefits check us med has served over 1 million people living with diabetes since 1996 they carry everything you need, from CGM to insulin pumps and diabetes testing supplies and more. I'm talking about all the good ones, all your favorites, libre three, Dexcom, g7 and pumps like Omnipod five, Omnipod dash tandem and most recently, the eyelet pump from beta bionics, the stuff you're looking for, they have it at us. Med, 88887211514, or go to us. Med.com/juicebox, to get started now use my link to support the podcast. That's us, med.com/juice, box, or call 88872115140,

Erin 20:09
we definitely still mull it over. My, my husband's family is very Southern Baptist, and we, you know, we sit there and we say, you know that there's a plan. There's a plan. We don't know the plan, and we try to not mull over too much about it, but it's very hard. It is very hard, as a human, to just accept it. Just accept it, yeah, and knowing that this is going to affect her the rest of her life. You know, the future that I saw for her is not the future that I see for her now, you know, and that's frustrating,

Scott Benner 20:43
yeah, no, of course, we talked about this recently. First of all, I think, I think Baptist Jesus's plan is just for you to spend a lot of money on CGM and pumps and things like that. Over the years, they're like, you know, what'll keep them working? What if they had more bills get them going? But quite seriously, like we were talking recently, gosh, about this idea of a normal life. Like, because we talk so much about you can live a normal life with diabetes, which I fully believe, right? And I watch my daughter do it, but no one's living a normal life. Like, do you mean like, like, what would normal be exactly? Because I think when people say normal, they mean unencumbered, true. You know what I mean? Like, I get to go do the thing I want to do, and that happens without me being sad or upset or inconvenienced or anything else that I just wanted to live a normal life. I think that's how a lot of people think about that phrase. And you know, I'm not going to say obviously, like, Oh, if it wasn't diabetes, it would be something else, because you get diabetes and something else. So then I love the positivity of you can live a normal life with diabetes, because I do believe that. But you also can't argue the fact that it's not normal. You know what I mean, like, it's, it's modified normal, new normal. Call whatever you want, right? But so I think you can live unencumbered with diabetes, you know, if you understand some things, and you have some luck, and, you know, decent insurance and, like, etc, like, all the things that you would need to accomplish that. But I would never disagree with anybody who said, like, this isn't normal, or this isn't what I expected, and I'm upset by it, the next step, 100%

Erin 22:26
not what we expected, not what we wanted for her. We didn't want her to have that extra junk to deal with, right? Our thought is, as a female, my thought is, she better find a partner that's willing to step up, because it takes a lot, and I hope, you hope that somebody will do that for her. You know, when she gets to that stage in her life, you know, as for everything else, we want her to live very normally. We we keep everything very normally she is in all the sports that she was before. We've had to get extra help past our Endo, and we've listened to your podcast. I mean, every ounce of information that we could absorb to allow her to have everything as normal and as pre diabetes, diabetes, you know, yeah, everything as before pre flood. We'll call it kind of that extra little Yeah, pre flood, we have, you know, everything that is done prior to and we just tried to tell her, we tell her, you know, you have to just take care of BDS first. Always be these first, but the rest of the time, be normal. Yeah. We want her to be normal and enjoy her life like a normal 10 year old kid. And

Scott Benner 23:36
I think what that means is Don't wallow. Maybe, and wallow is a bad word because it makes it sound like you're doing it on purpose. But I don't mean it like that. I mean, don't stay in this part, which is really the Listen, it's a matter if you break up with your boyfriend when you're, you know, 16, or you lose a job when you're 35 or whatever, like life's gonna go poorly. A number of times, you can't stay in that spot, right? You have to keep moving forward. There are all these platitudes you could use to, like, make this idea, but you just can't stay here in this and just keep re adjudicating. This isn't fair. You know, also, I did enjoy your point about a partner. I don't even you said as a girl, and I wondered what you meant by that. But because, I kind of think, because I kind of think no matter what, but I also don't have the experience of having to date 17 boys before I find a decent one. But I think there are women like that too, like, I think you we mean like, find an emotionally mature, reasonable person who's giving of themselves and willing to shoulder another person's burden. Is that what you mean? Yeah,

Erin 24:45
and so I mean by as a girl is, for me, as as a woman, the world is very it may be I have a lot of rights and things like that, but I still, you know, I still need a husband or a partner that. Is stable that, you know, Will and can take care of me, because there's a lot of things that I can't do, you know, I think about if and when my husband becomes that age. He's much larger than me, so I'm going to struggle to help take care of him. So I need to find, I want her to find somebody that is able, body, mentally stable. You know that can physically and emotionally take care of her? Yeah? Because we won't always be here to do that for her. That's

Scott Benner 25:28
the That's what I was trying to get to. That's the feeling you're having, that I have to live forever now, feeling Yes, yep, yeah, she was

Erin 25:35
she we're not allowed to die before she is, because we will be taking care of her forever. We've already told her we'll just blow out the other side of the house and refurnish it for her and her husband, and they can live with us the rest of their life. Yes, that'd be lovely. We'll be taking your hair. We'll take care of her.

Scott Benner 25:51
Don't flush the toilet too much, though, because the plumbing is not great. Hey, the plumbing is good now it is. Yeah, sure, yeah, you're plumbing, and you're and your $15,000 home equity loan, I imagine that you have now it's nice to think about also, I think honest of you and and kind of you to say out loud, because I can hear in your voice, as you're talking, you don't want to say to people, I need help, because I'm a Woman like that's not your intention, but size is an issue at some points, and could be with help once people, I'm literally watching a family member go through this right now, where older people, you know, the husband deteriorated before the wife, and she just, she really can't manage what needs to be managed, and this

Erin 26:37
is something that she's going to have The rest of her life. And, you know, I It worries me. I want her to have somebody that will be able to take care of her, because I know I won't be able to, yeah, and I think that's all that I really am getting at. But

Scott Benner 26:51
yeah, I just can I take a slight, not a complete left turn, but just a slight left turn, because I'm interested in public. Do you feel more comfortable when your husband's with you? Yes, you do for personal safety reasons. Yes, okay. But do you consider yourself like a worrisome person? Like, oh my god, something bad is going to happen? Or no, it just feels like common sense.

Erin 27:13
I was not a worrisome person until my children all I want

Scott Benner 27:18
to do is protect it. Aaron, you broke up a little bit. You weren't a worrisome person before. Worrisome person before your children were born. Is

Erin 27:24
that what you said? Yes, okay. Um, not worrisome. And then when they were born, I just became a nervous wreck. And that's one of the things with Kylie's diabetes that I know that I just I worry about everything with

Scott Benner 27:37
her. Okay? Is that the mom thing that kicks in? Do you think, like, I gotta, I gotta keep everybody alive now, like, I hadn't never thought about that before they babies came flying out,

Erin 27:47
right? Yes, I think that's definitely that mom instinct kicking in, that, you know, I just this world is crazy, and I just, I want my children to be safe. And with that, that just comes in that anxiety and things like that. I know that if, if my husband's there, at least there's two set of eyes on, you know, our children, and it's not just me. And

Scott Benner 28:09
that feeling grew once the diabetes came, oh yes, to kind of incorporate that idea of, what if she gets low and we're not here, what if she can't afford something and we're not hear that kind of stuff. Yes, yeah. I think we all have that feeling, by the way.

Erin 28:25
Seriously, I looked at all of our stuff, and I, you know, I thankfully had some life insurance that I purchased for her when she was, like, two years old, yeah. And they told me they're like, do not ever let us not know that your bank account has changed. You know, like, the account numbers have changed because you don't want this to lapse, because now she can't ever get life insurance because she's diabetic,

Scott Benner 28:47
and that's something, yeah, I remember, listen, you know, I'm not planning the great takeover or anything like that, but we were saved. We're saving money as we're getting older, right? And when we spoke to somebody about how to manage it, they were like, well, what are your goals for the money? And we were like, We would like to leave it to our kids. And they were like, Yeah, but for you, and we're like, No, our daughter has type one diabetes, like, so we would like her to, I don't want to. I'll be dead. So I guess it wouldn't matter, but it would matter to her, and it would still matter to me, if I could see myself in that scenario. I don't want her to be 40 or 50 years old and like, ever have a moment where she's like, I can't afford insulin I can't get an insulin pump? I can't whatever things technology is going to look like down the road, and then the pressure of, if I leave her money, how do I not back to your original point about your son, like, how do I not leave an equal amount to my son? Like, is the last thing I want him to think after I'm gone is that he cared about her more than me. You know what

Erin 29:44
I mean? These things are always a thought in the back of your mind, and you're just like, oh my gosh, yeah, it's it's hard being a parent is what's best for them, and it's so hard.

Scott Benner 29:55
Aaron, without this diabetes, you could have ignored all these big life questions forever. You. Know,

Erin 30:00
and I could always just joke be like, Yeah, I don't like either of you guys.

Scott Benner 30:03
You guys suck. And, you know what, if you don't like the way that sounds, just, you know, get a good job, because you're gonna need therapy, and I'm not paying for it. And, like, and you could have just joked your way through it like everybody else does, and, you know, but instead, now it's like a real omni present, honest to God, issue in front of you. Yeah,

Erin 30:21
fun times. I wanted to tell you one other, it's been a little dark and gray for us for the last two years, and we feel like we're finally coming out. So I just wanted to tell you so, along with the diabetes, so she was diagnosed in October, then July of last year, she ended up having a appendicitis that was undiagnosed. Oh, so the abdominal pain, all of those issues were, you know, in hindsight, we're like, man, what is going on? But she ended up having an undiagnosed appendicitis. They couldn't figure it out. One of the surgeons came up to me, and they're like, I'm sorry. I let her diabetes mask a lot of these symptoms. Her appendix ruptured and she had to have emergency surgery. So she has a scar from the top of her belly button to the top of her pubic bone because they had to go get it. It was under her tailbone. Oh, my

Scott Benner 31:08
God, that's terrible luck for the kid. Yes, she's had

Unknown Speaker 31:13
really luck. Yeah, no

Erin 31:14
kidding. Jesus Christ. That's not even a lie. She has had these she has left in the last two years. So

Scott Benner 31:21
what do you think she if she could give one of those two things away? Do you think she'd say the diabetes or the scar in her belly?

Erin 31:26
I'm pretty sure she would rather get rid of the diabetes.

Scott Benner 31:29
Yeah, okay, let's just wonder. So wait, was this like an emergent thing? Were you like, Oh, she gonna die because you live near nothing? Yeah.

Erin 31:36
So we went in and we assumed, you know, hey, maybe this is appendicitis. You know, she was having pain, but once she starts growing up, we're like, Okay, this is our first diabetes protocol where we don't really know what we're doing. So we went and started getting fluids, and they're like, Uh huh. Just looks like she's having some inflamed lymph nodes. They sent us home. A couple hours later, she brought us right back to the hospital, and then they're like, Well, her, you know, blood sugar is off and she's having symptoms, but, you know, we think it's more of the diabetes. So they kept us for three days. They got her ketones back in order. We got her blood sugar back in order. She was still in pain, but they sent us home again. They said that, you know, those lymph nodes were inflamed. They called it like mesenteric adenitis, or something like that.

Scott Benner 32:25
And, and then we came back and they not spell. We can't figure this out. Is that what happened? Yeah, no, yeah. There was

Erin 32:31
no, you know, we don't know. Attitude. They were like, Yeah, you'll be fine. She'll grow into it. We're like, what she'll

Scott Benner 32:37
grow into, which she'll grow into the abdominal pain. It's

Erin 32:41
something that could be, you know, something she'll have until she's an adult. We're like, why? Boy, I'll tell you.

Scott Benner 32:46
Until I had a wife and then a daughter, I had no idea how quickly when people don't know what to say, when it's about a woman, they just go, that's a lady thing. You'll grow out of that, you know, once you I see, once you have a baby, a lot of that stops happening. Is that your medical opinion? Thank you. People are I'm not this person, like, but I do see this boy. It's easy to just say, oh, that's because you're a girl. You got girl parts, and then they just don't help after that. Like, PCOS is an example. Like, this is a real, serious problem, and the answer to it is bad luck on your part, I guess, yeah,

Erin 33:21
well, and I still feel that's how it is with the diabetes. It's like, nobody has a clue. I feel like I'm explaining the definition of type one diabetes to everybody that asks or come across, you know, yeah, comes across her. They'll ask me, how's your daughter? And they're like, does she has type one or type two? Again, tell me again. And I'm like,

Scott Benner 33:37
type one. And we said, we talked about, yeah, also to connect the two things together. It doesn't matter what your a 1c is. It doesn't matter if it's six or five or eight or nine. If you look like you're trying, a physician goes, You're doing great. You're doing great. So you tell a person with an eight and a half a 1c You're doing great. And for 20 years, they're like, I'm doing great, you know. And then they start having problems. They go, I don't understand. Doctor told me I was doing great my whole life. Oh, yeah, great for, you know, you or, you know, for the amount of effort I thought you could put into it, or the understanding I thought you had. But no one ever says, hey, it's an eight and a half. I love your effort here. You're doing great. But I bet you if we made a couple of tweaks here and there, maybe brought in a couple more ideas. What if we made this a seven, and then once we get the seven, what if we look into getting into the sixes and really try to eliminate the idea of long term complications for you? But no, just You're doing great. That's the end of it. By the way, plenty of doctors who do that stuff, but way too many who don't, is what I'm saying, yeah, yeah,

Erin 34:41
yeah. So she, like, I said, you know, undiagnosed. So she went and had her surgery, and that put her out for a while, you know, because it was major abdominal surgery, yeah. So at that point, she was like, everything in anything in my life has been bad for the last two years. And she's like, I. Want to do any sports. It's softball. Softball caused diabetes. Softball caused my appendicitis. I don't want to play softball anymore. I just and she kind of gave up for a minute, like she was like, over it. She was over everything. Because when we got back from all of that, after trying, you know, all those months, and we were doing really good, and then she had the appendicitis and surgery and then having to refigure out how to get her blood sugars under control again. She was just like, I just, I don't want to. And we're like, you don't want to. She's like, No. We're like, but you like, this girl can't sit still. Yeah. Like, what are you going to do? We finally, we actually found a gentleman in Canada that has diabetes that has kind of, I mean, we are paying him, but he has been pretty much a mentor for her, and been helping us as well, because we wanted her to be active and we wanted her to be busy, and between all the negative that she's had, we wanted her to be positive about stuff, and she finally agreed to play softball again. Now we've we're over our head. So I think we're on, like, tournament number four for she's

Scott Benner 36:06
back on to the softball. Didn't give her appendicitis?

Erin 36:10
Yeah, yep, she's back on. It's fine. Life is fine. I don't understand.

Scott Benner 36:13
What's the magic? What's the magic Canadian that you're working with? What does he like? Like, hook her up to a sled and tell her to pull it, and then it's like, see you can do it like, because I don't understand why they're Canadian and what they're doing. I'm confused, right? Okay,

Erin 36:27
so, like I said, we want her to enjoy life as much as normal as possible, right? So we decided, as parents, we have exhausted, you know, the endo the diabetic educators, we've listened to your podcast. We've done everything that we possibly could on our side as parents. So we had found this guy that could mentor her. He's been type one since he was 11, and he's a bodybuilder, and he had talked about personal training, helping people out, and I spoke to him, and what he's pretty much done for us is give us other ideas, other things, to help us focus her diabetes. He's like, you know, because she's so active, our diabetic educators, we bounce back and forth with so many things. Nothing ever gets explained. We struggle, you know, we've had these weird drops during softball that we can't get an answer for. So we reached out to somebody that

Scott Benner 37:28
it's active insulin. By the way, it's active insulin, if she's dropping during softball, I would imagine, yes, yes. We

Erin 37:34
found out. Yeah. Thanks. You know, to everything. He helped explain it. I guess. Are

Scott Benner 37:38
you telling me that your 10 year old has a Canadian life coach.

Erin 37:42
Yes. Oh, okay, yes, very much. So that is exactly what it is. I see she has a coach. And when we have questions that are just, you know, like, hey, what do you think about this? He's like, Well, you know, sounds like she's just very insulin sensitive. Let's, you know, test this out. Let's see what other things we can do to help, you know, make this

Scott Benner 38:02
I didn't know this was the thing. Can I be a life coach?

Erin 38:06
Well, if you have information, I'm assuming so I think you're life coaching, just in a broader spectrum already. Yeah,

Scott Benner 38:11
I might be doing it already. You might be right. But huh? I mean, after I'm done with the podcast, I mean, like, can I be or actually, could we just turn it into a pot? Or have I already turned it into a pot? Oh, it's hard to know. This is such a meta moment for me.

Erin 38:25
Yeah, but no, I mean, it is true. She, she literally does. She has a life coach that is diabetic, that is a, you know, body building pro carb, you know, all the things that you talk about. But he is MDI, and he takes for a long time, nice.

Scott Benner 38:40
I should take PayPal. Okay, no, hold on a second. This is very cool. I don't know how you found this, and I don't promote coaching, like, through my stuff. So, like, just because I can never know who's the good one and who's the bad one, or I would just ask you the person's name. But anyway, like, you know, listen, if this sounds exciting to you, just just Google Canadian yoked diabetes life coach. I'm sure you'll find the person, but, yeah, I just tumbled down a rabbit hole in my own mind. I was like, Huh? You know, people in my own life, people come to me all the time, they have since I was younger, and they're like, here are my problems. What do you think? And then I'd be like, Oh, I would do this and this, like, I can't remember one of my earliest life coaching moments. I guess I was probably like, 20, and this younger kid, like 17, this is gonna sound crazy to people, but ATM machines had just started becoming a thing. So depending on where you live in the world, Mac machines, ATMs. But you know, money access, where you can go stick a card in a wall and money flies out of it. I know you're all like, yeah, we know what that is. But I'm trying to tell you that I once lived in a world where that didn't exist. So you're even like, holy, how old are you? But when they came out, people had problems with they were taking too much money out of the bank, like it was almost like a compulsive thing. And this young kid, like 17 or 18, he worked at a place where my girlfriend. Worked. I was picking her up one night, and he was complaining to people that he's like, he's wasting all of his money. He's going broke. I turned to him and I said, what's happening? He goes, Oh, you know, like, you see something for a couple bucks. And I go to the ATM and I get $5 out. And then before I know what I'm doing, again and again and again. And I said, Oh, okay. I said, How much is a lot of money to you? And he said $20 and I said, Okay, only ever take out $20 from the ATM. And he's like, but then I'll, I'll use more money. And I was like, No, you won't. You'll go to the ATM less frequently because it'll, it'll stop you. And, like, a couple months later, he came back to me, and he was like, Hey, man, I've been saving all kinds of money because I took your advice about the ATM thing. And I was like, Cool. Like, I didn't really care. I was like, whatever. Like, I just love talking. And I was like, yeah, it's great, man. But then I realized I started looking at it. People come to me with their like, you know, dating issues or about they want to talk about money, they want to talk about the world. And they were always asking me what I thought. And so just now I thought, Oh, maybe I could do that as a retirement thing. That sounds great. Like, I can make some extra money. You extra money, you know, being somebody's Canadian, like, friend, and I'll pretend to be in Canada. I'll hang up like a maple leaf behind me or something. Because Canadians are people think they're nicer. So I think it'll go over bigger. And I'll go a and, oh yeah once in a while, but, but then I realized, I'm like, oh my god, maybe that's what the podcast is

Erin 41:21
it? I mean, honestly, you, you probably are, like I said, just in a broader spectrum. Jesus and this gentleman. I mean, he really, I guess you can call him a life coach, but it's like, once you've exhausted,

Scott Benner 41:30
where else are you going to go when you're out of ideas? Yeah, and I feel like our Endo,

Erin 41:35
our diabetic educators, we're at a loss, we're at an impasse. We just they give us what we need for, you know, prescriptions and paperwork and things like that, but for the day to day lifestyle that my daughter is doing and what we want her to continue doing, we needed more information. Okay, so we found somebody that could live that lifestyle and is, you know, is helping her. Oh, I'm seriously

Scott Benner 42:01
good for you for looking positive and not just sitting around going, Oh, woe is me. This sucks. Like, what are we going to do? I'm out of ideas. Oh, well, let's all just jump in the river, you know. Or, yeah, we're

Erin 42:10
all a little tired of, you know, being sucky. We want life to be a little bit better. We're tired of, you know, the roller coaster. So we want to be more positive. And if we can't find the information here, we started looking elsewhere. You know,

Scott Benner 42:25
I tell people all the time, like, listen, I think the information about management stuff is in the podcast. But if you're a person who doesn't learn by listening, or just can't put two and two together while it's happening, like, I get that too. It's not for everybody. You know what I mean? Like, I think I'm comfortable saying that the way I present it seems to work for a lot of people, but it's certainly not going to work for everyone. And also, I might say something that you're just like, yeah, I agreed with that part, but not with that part. I think that's great too. Like, take the information a la carte. And I love that you went to a whole bunch of different sources and pulled together what you needed. That's fantastic. You know, way not to give up. But really, I'm being serious. Like, that's wonderful,

Erin 43:04
yeah, like I said, I we listened religiously to your podcast. It came up in you know, conversation, hey, try this, you know, try this person. Listen to this podcast. You know, see what you think. But it's like, I'm not gonna lie. Start Talking ratios, things like that, my eyes glass over. And I'm like, I hate math.

Scott Benner 43:26
I hear you so, yeah,

Erin 43:27
trying to, you know, relate that and figure that out. But I think, again, like you said, I think a life coach is probably the correct terminology for him, because, yeah, I mean, that's what he's doing. And he speaks to her on Zoom, he we have a weekly call with him, and he asks her, you know, what kind of questions she has, and we try to get as much information of you know, what he's done or what he's tried to, you know, combat these situations that I my brain cannot pull that information. And I'm like, I know I heard about that once upon a time, but I can't find that information. I just want

Scott Benner 44:01
you to be careful, because eight years from now, I don't want her coming to you saying, Mom, I've fallen in love with a 40 year old Canadian life coach, and I'm going to the great white north. Okay, very careful. I'm teasing. But although, if he can take care of her, I guess you're, you're, you're like, well, there's a lot of the only he was if only this guy was 10, knew all this stuff and could grow up with her. This sounds like a really great match, right? Oh, my god, wow. What a out of the box with how did you come up with that idea

Erin 44:29
to find somebody? Yeah? Well, social media, I guess technically, social media just randomly. You know what? I love, our phones. Once you start Googling, searching, one thing you know, populates all this other information. And social media popped up all these different people that were talking about diabetes and the information that he had coincided with a lot of what you had talked about, and the fact that he was MDI and ball overlap, managing it overlapped. And, yeah, yeah. And that. Why we reached out to him, and he had posted like, Hey, I'm taking on clients. I'm, you know, trying to help them. You know, it's very cool. Better themselves physically. I have the,

Scott Benner 45:09
I mean, it's a rule, I guess, that of how I manage some of this stuff, like, whether it's in the Facebook group or here, I don't promote health coaches because I don't have the time or the inclination to figure out which ones are good and which ones aren't, and I don't want to be the reason you go give somebody 1000s of dollars and then they're like, uh, I got ripped off. You know what I mean? Which I think sometimes people take as, oh, you're just saying that health coaches are all like a rip off. I'm not saying that at all. I'm sure there are great ones, and it sounds like you may have found one. I have a pretty big responsibility, like a lot of people hear my voice, right? So I try to be aware of that, and I don't have the infrastructure to set out and figure out which one of these are great and which one of them aren't. And I don't, and to be perfectly honest, I don't want you having a bad experience and blaming me. So you know what I mean, like, so I just don't do it. But then what happens is, like, a half a dozen times a year I get yelled at by a health coach. I'm not hurting anybody. I'm like, didn't say you are just saying we have a flat rule where we can't, you can't be a health coach and be a member of the of the group. I'm sorry, yeah, you know well, and

Erin 46:18
I feel like now that we're two years into it. I'm glad that we didn't start off with health coach, because it gave us time to figure her out, figure things out ourselves. It was just, you know, now we're to the point where we understand the best of our ability at this point. Yeah, we're only getting so much information from these other sources. What other sources can we pull or, or, you know, or her. And as parents, it's like, well, if it costs me money, I'm gonna still find somebody that's gonna help her. And if it helps her, great,

Scott Benner 46:50
cool. Can I ask you what it cost? Would you tell me if I asked you what it cost? I'm trying to think what it cost. I'm trying to think I'm so interested if you're gonna be embarrassed, or if you're just gonna tell if you're gonna be like, Oh,

Erin 47:02
actually, I'm not. Embarrassed at all. Like I said, you know, as a parent, I'm like, I would pay for what we're everything that I owned, yeah, to find anything to help her. So I think I want to say we're doing four months and it's like, $800

Scott Benner 47:16
Okay, I want everyone listening to send me $800 right now. Okay, that's it. Of advice, yeah, and just figure out where I am or whatever. Send me $800 and we'll all call it even, okay, and that'll be that I just, I have to tell you something. Aaron, if everyone sent me $800 right now, I'd be wealthy. That's what I'm looking for. I'm just, please don't send me money. I'm just joking. I want to make sure you're done asking everything you've asked, saying everything you want to say, because I have a question that's outside of our conversation that I want to record. So I don't want to run out of time and you have to go help people help make sure you've said everything, or is there anything left? Yeah,

Erin 47:53
yeah, no. Like I said, I we have been in a very dark two years, and with my daughter, we are finally feeling that things are getting much better. And you know, the time frame of this phone call just worked out really well, you know, because when I first set up this call, no, we did not have our Canadian life coach at that point in time, and it was post surgery, so I was in a very dark, mad, upset place, you know, damn diabetes, damn appendicitis. You know, life is just kind of key, to be honest. I'm very positive right now. I'm very happy she's thriving. And that's that's the most important thing as a parent, is having her thrive. I like the quick turnaround. Having a life coach for her has been great. It's been helpful for us. And all the information that we've gathered from you, it really does help. Yeah, but to be positive, seriously,

Scott Benner 48:45
very cool that you figured something out and that you went from like, where you were when six months ago. You're like, I want to be on this podcast, because everything sucks, and I gotta tell people, everything's fucks. And now you're like, hey, everything doesn't suck as much. And I think you know, you'll hear me tell people all the time that, um, things get better much more quickly than you imagine. And like, you know, in this moment around diagnosis, or while you're trapped in those feelings, you think, this is the rest of my life, and all these things you describe about how your son feels and how your daughter feels, and what happened to softball. And, you know, why is this happening? You think, oh, this is how I'm gonna feel forever, but it's just not true. Like you. I always tell people, a year from now, you're gonna look back and think I don't even recognize myself anymore. And you you got to that, so that's very cool. Yeah. Thank you. Really. Excellent. So now here's my question, you work in a dental office? I do. You don't have to say, where do you clean teeth? Or are you an assistant, or are you a dentist? I'm a dental hygienist, so I clean teeth perfect. I'm going to ask you a question, and you answer me honestly, if you can. Okay, is it a scam when you clean my teeth? Because here's what it feels like happens. It feels like you take a spear and you jam it down between my tooth and my gum line, and you go, Oh, bleed. Saying you're going to need trays, because everyone thinks, yeah, what's bleeding? Because you just poke me with a needle. And then they say things like, there's a gap here. This one's a three, this one's a two. We don't we just don't want any fives. Oh, there's a bleeder, but it's a four. But you're saying that while you're poking me with a sharp piece of metal, are you just trying to are you trying to steal my money and get a deep cleaning because the insurance doesn't pay for it? You want a little cash? Go ahead and tell me the truth. That's

Erin 50:27
hilarious. So to be honest, I am not that kind of hygienist. I I don't like to diagnose that way, but to tell you the truth, the little probe that we use is blunted, so it's not sharp, it's not a spear. So if you are bleeding, that means that you do have inflammation underneath your gum line. And I tell people, think of it like an ulcer. It's fine until you start touching it or rubbing it, and that's when it bleeds. So it's incognito until I start rubbing on it, is technically what I do. I love that

Scott Benner 50:56
you said rubbing on it. That was very creepy, parents like until I start rubbing on your mouth, and then you'll know what's going on. Yeah, yeah. No, wait, wait, wait, wait, hold on. There's people have a lot of questions here. I was just talking about this with the editor the other day. He's listening to it now, going, oh my god, we did talk about that months ago. That's hilarious. What about the trait like, what? Or hold on, what is the inflammation a sign of besides inflammation, is it a sign of anything else? So it's just

Erin 51:21
a sign that you have pretty much a bacterial overgrowth underneath your gum line, and that it causes infection, and that infection causes bleeding. So bleeding is an indicator of infection or irritation. And is

Scott Benner 51:33
that going to kill me? Because they make it sound like I'm gonna have a heart attack because of it. So just

Erin 51:37
like you talk about with diabetes, it's not gonna kill you tomorrow, but long term, you will have complications. Yes,

Scott Benner 51:44
I'm gonna die because I have a four pocket in my tooth by my molar. I got you now, and brushing doesn't help. It does flossing, flossing,

Erin 51:53
water, picking, yes, that's about the only thing. And getting your teeth cleaned is the only thing that gets that bacteria out

Scott Benner 51:59
of there. Okay? And what about when they charge me a million dollars to make a mold in my mouth and, say, squirt some gel in this and then stick it in and hold it in there for 10 minutes and use your trays or whatever? Is that a thing you sell, or is that a scam?

Erin 52:13
I personally don't do those. I've heard about them, so I couldn't tell you exactly when it comes to that. But I hate to tell you, dentistry is a business too, and everything is expensive.

Scott Benner 52:25
I don't mind it being expensive, if it helps me. I don't want to have a heart attack. But like I'm saying, are the trays like, are they snake oil? Or do you think they really do something? I

Erin 52:34
think they use peroxide in them, and peroxide helps to oxidize the bacteria. And in that aspect, it does help.

Scott Benner 52:42
I don't love your answer. Okay? I feel like if I stop this recording, you're going to be like, Scott, go get your money back for those trays. Break the front window if you have to. They owe you, but I don't, but I feel like you don't want to say it now. So the real answer is, I mean, I want to be clear. I do brush my teeth, but Brush, brush, floss and water. Pick, like, I should jam like, down the side with some like, when I get the deep clean, do the deep cleaning with the water. Do you do that? I do,

Erin 53:09
but just a water pick, like, the ones that you see at the store that just are, that stream of water flushing that underneath there brings that oxygen into those pockets. And with the oxygen in the pockets, it helps decrease those bacteria. Got

Scott Benner 53:21
it my last question, because you do have to go help somebody right now at work, why do dental hygienists talk to me while they're in my mouth?

Erin 53:29
Because you're a captive audience, and we don't have anybody else to talk to, and because we say everything exact same all the time, like it feels like scripted. I tell everybody to floss. I tell everybody to brush. I tell them kind of nice to have somebody that doesn't talk back to you. You just talk to

Scott Benner 53:45
them so you're not expecting me to reply.

Erin 53:47
No, no. It's a direct like, are you flossing? And then wait for my fingers to leave your mouth, and then please reply. But if I'm just telling you about my kid or something like that, a little, you know, I little eye contact or a little head nod, works just fine. Okay, okay. All

Scott Benner 54:04
right, they're listening to me. I feel a lot of pressure in that situation. I'm like, this is a deep question. I have answers. Hold on a second. Oh, that's why I'm in there. So long. All right, I'm just gonna shut up next time. Okay, Aaron, thank you. Go clean someone's teeth. All

Erin 54:16
right, Scott, thank you so much. Take care. Have a good day. You too. Bye. You this

Scott Benner 54:20
episode of the juice box podcast was sponsored by us Med, us, med.com/juice, box, or call, 888-721-1514, get started today with us. Med links in the show notes, links at Juicebox Podcast com. Today's episode was sponsored by Medtronic diabetes, and Earlier you heard from Maddie, who shared with us what finding Medtronic meant for her. Learn more about hyperglycemia at Medtronic diabetes.com/hyper. Hey, you listened all the way to the end. You might want to know more about the Juicebox Podcast. If you do, go to Juicebox podcast.com scroll down to the bottom and subscribe to the Juicebox Podcast newsletter. Each week. You'll get a rundown of the shows from the past week, just in case you missed something and you think, Oh, I would have loved that. Now I know if you're ready to level up your diabetes care, the diabetes Pro Tip series from the Juicebox. Podcast focuses on simple strategies for living well with type one. The Pro Tip episodes contain easy to understand concepts that will increase your knowledge of how insulin works and so much more, my daughter has had an A, 1c, between five, two and six, four, since 2014 with zero diet restrictions, and some of those years include her in college. This information works for children, adults and for the newly diagnosed and for those who have been struggling for years, go to Juicebox podcast.com and click on diabetes pro tip in the menu, or head over to Episode 1000 of the Juicebox Podcast to get started today with the episode newly diagnosed, we're starting over and then continue right on to Episode 1025 that's the entire Pro Tip series. Episode 1000 to 1025 thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Hey, what's up everybody? If you've noticed that the podcast sounds better. And you're thinking like, how does that happen? What you're hearing is Rob at wrong way, recording doing his magic to these files. So if you want him to do his magic to you, wrong way. Recording.com, you got a podcast. You want somebody to edit it. You want rob you.

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#1413 Low Dose Naltrexone

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Liz shares her family's autoimmune journey and how low-dose naltrexone helped. She highlights overlooked links between thyroid, insulin resistance, and autoimmunity.

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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 back to another episode of The Juicebox Podcast. I

want to jump right into this one, but Liz is back. She's a returning guest, and today we're going to talk about a lot of stuff, but mainly we talk about how she's using low dose Naltrexone. Now, you either heard that and thought, Ooh, interesting. I can't wait, or I don't know what that is. Either way, hang out for a second. It'll all become clear. Nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan, don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com when you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D drink, ag one.com/juice box. Don't forget, if you're a US resident who has type one, or is the caregiver of someone with type one, visit T 1d, exchange.org/juice box right now and complete that survey. It will take you 10 minutes to complete the survey, and that effort alone will help to move type one diabetes research forward. It will cost you nothing to help. Today's podcast is sponsored by us Med, US med.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 us. Med.com/juice box, or call 888-721-1514, this episode of the juice box podcast is sponsored by the ever since 365 that's a CGM that lasts a full year, ever since cgm.com/juicebox one year one CGM Liz has been on the podcast in the past. She was in an episode called blackberries to the rescue. Blackberries to the rescue. You should go check it out. It's a very interesting conversation that culminates with a story of her husband and son, both type ones out on a hike. The low snacks got used up on the sun. The husband gets super low, saves his life with berries on the uh, it's a great story. You should go listen to it. But Liz comes back today because A lot's happened in her family over the last couple of how long would you say,

Liz 2:39
um, I'd say just Yeah, the last year, year, yeah. So we have, we have four kids, and my oldest is the one with all the all the medical stuff. So he has type one. He was diagnosed when he was 12 months old, and then a couple months later he was diagnosed with severe food allergies. And when he was about eight or nine, he was diagnosed with what I now know as Hashimotos. At the time, I just thought it was hypothyroidism, yeah, so the reason why I wanted to come on was mainly the thyroid and autoimmune stuff that we had pop up in our family this last year. So I'll start with my daughter. So she was 12 at the time last year, and she normally loves school. She's a great student, and she started just missing so much school and getting really tired. Sometimes it was like her head was hurting, sometimes her stomach, sometimes her joints, just extreme tiredness. So she missed a lot of school, and I took her to a walk in doctor and asked just for auto immune screening, because we have a lot in our family, and it came back that she has Hashimotos that sort of started me on, I guess, a deep dive of researching Hashimotos and thyroid. And I knew, since her TSH was was optimal. I knew that it could be years, and maybe, you know, maybe she won't ever need it. Hopefully, that's the case, but I knew that she wasn't going to be treated by a doctor for her symptoms, or even acknowledge that the symptoms that she was having were related to thyroid. So anyway, so I just started researching at the same time my son, who was 17 at the time in October, his TSH was also optimal, but his endocrinologist wanted to lower his dose because he lost some weight. I reluctantly agreed, because he already was sort of symptomatic even at that optimal dose, but he's kind of always been like that, so they lowered his dose, and when we retested it, the educator said the doctor's happy with the number. There's no need to change the dose. And I asked what it was, and it was had gone from point four originally, and it had gone jumped up to 4.7 Or something at the at the high end of the range, which is not optimal, and he was also feeling more symptomatic. So I had to basically beg her to adjust the dose. And I asked her, if she wasn't willing to go back up in a dose, could we just alternate? She said to me, there's absolutely no medical reason. And I want to stress this to you, there's no medical reason to adjust his meds, because if he's feeling anything, it's not related to his thyroid, because he's in range. And she said, it'll make you feel better. We can alternate the doses and try that. So how

Scott Benner 5:39
did that make you feel that they said there's no reason to have this medication, but that you continue to ask. And then they were like, Okay, fine, you can have it. Then, yeah,

Liz 5:48
you know, I just, I feel like she was like, anything to just make this intense woman get off my back. Isn't

Scott Benner 5:56
it strange, though, because too much thyroid medication is also bad. So if the doctor really believed that it was going to be too much, this is my assertion.

Liz 6:05
Yeah, she should. She she could have just flat or refused, but, you know, I'm

Scott Benner 6:10
saying she wouldn't have given it to you if she thought it was going to cause a problem. So she, I think what that story tells you is she didn't know either, and then she tried to put it on you, right? I believe the kids call this gas lighting. Am I right? Do I understand gas lighting correctly? Yeah, that's what she does, right? She puts it on you. There's no way she doesn't think, Huh, that might be what's going on here, but I don't want to put my name on it. We'll let the mom take the responsibility. I think it's shitty, is all I'm saying. So, yeah,

Liz 6:41
it felt, it felt. It felt pretty shitty, actually. Okay, yeah. So anyway, we, you know, I, I was very even though I wanted to put him back on his original dose. I was like, if I do that, you know, the blood tests will be different. So I was very faithful. I alternated the doses, and then I got a phone call from her with the next check and his TSH had jumped up to seven something. And she said, Okay, at this point, even though I still he's probably not feeling symptomatic at this point, but we will go back to his original dose. And so we went back to his original dose, which was still, you know, likely not enough at that point, because he was also growing and still feeling worse and worse and worse. And at the next the next blood test, he had jumped up to 31 his TSH, this all spanned from October to me, you know, this is his grade 11 year, and ended up missing so much school, and there was other stuff going on as well. It wasn't, I can't say it was all his thyroid, because he also, we found out that he had other allergies that were undiagnosed because he was having reactions as well. So, you know, he was having severe gastric upset. And some of the times he was missing school, it was because he just couldn't drag himself out of bed, probably because of his thyroid. And then other days it was, you know, because of allergy stuff. And while this was all happening as well, I came across an article that said

Scott Benner 8:17
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Liz 10:43
are allergic to grass and you have asthma, which he is both, there's a chance that you could be reacting to one of the filler ingredients in your thyroid meds, and which is, it's a case, yeah, it's from this tree, you know, like the tree doesn't grow anywhere near us, so it's not like he would be reacting to the pollen, but it's, you know, it's related to the grass stuff, you know. So I knew it was a long shot, but I was like, I know he's allergic to something. Like, there's something happening that I should be able to figure out, and he's suffering, and I can't figure it out, right? So I think this was before we knew his TSH was 31 so at this point, the endos thinking he's seven, probably going down. He's probably, you know, he's probably fine, thought, right? Wise. Anyway, so I wrote her an email saying, think there's a chance. I said, chance. Like, I'm like, I'm not positive, right? But I was like, if there's any, if there's any possibility, I I would love for him to try a different Med, that there's so few meds that he can try in Canada here, like, we don't have that the tears sent up here yet. And so it was like, maybe we could go to a compounding pharmacy, you know, get it without the fillers, just, you know, and I will have the allergist test for it. And I realize it's a long shot, but you know, what the heck there's a chance, right? You know. Keep in mind,

Scott Benner 12:00
you're talking about eight months this has been going on for him. Yeah,

Liz 12:03
yeah, she was, you know, she contained her

Scott Benner 12:07
disdain for you.

Liz 12:10
And so she's like, Okay, I highly doubt it. I highly doubt it. But if, if you want, we can, we can go that route. And by the time I, you know, heard back from her, he did have an appointment at the allergist a week later. So it was like, okay, you know that we'll see what's happening. But I did feel that, you know, I was being, you know, she in her mind, she thought I was crazy, because she already, you know, she kept on saying, whenever I bring up the word optimal for thyroid, she's like, well, we have very different ideas of optimal, and there's no reason to think that anything, any symptoms he has. It's not really, oh. And then at the same time, I had been asking to know if, if he in fact had Hashimotos, because I was like, has, could we get his antibodies tested? Because I'd like to know. I think it's good for him to know if he does in fact have Hashimotos or just right hypothyroidism. And you know, chances are. And to their credit, you know, she's like, we don't need to test antibodies. There's no reason to test antibodies, and we're not going to

Scott Benner 13:07
because what's the reason against testing for them? Well, I think it's

Liz 13:10
a money thing. Like, I did find out she I wanted her phone calls, she she called back, and she's like, I did look again in his chart, because she'd said she'd already looked in his chart and he'd never been tested. And then she said, I looked again, and when he in 2012 when he was diagnosed with leading thyroid meds, his antibodies were tested at that time, and it does show that he has Hashimotos.

Scott Benner 13:33
Yeah, I would have said, why was it necessary then, but not now? Like, I feel like you just make things up when you're talking to me, is what I would probably have said. But okay, good. I

Liz 13:43
feel like what it is is that, you know, the government has mandated that they don't test antibodies because it saves money, and then they have to come up with the reason to defend that. Otherwise, if they told their patients that are asking for it, we really think that would be a great idea to test for them, but we can't, I don't know. Like, I'm trying to reconcile why they why they said all this stuff. By

Scott Benner 14:05
the way, I don't mind that there are financial reasons to do things and not do things. I mind the lying. I mind the making things up, because then you, you cling to those reasons like you don't mean like the doctor said. So down the road, you might use that as a reason to justify something else, when the truth is, it feels like they're just saying whatever shuts you up. Yeah.

Liz 14:30
And I said, you know, I said to her, I was like, I feel like it's his, his medical knowledge, like he has a right to know, you know, if, if he has this or not. Because, what if, no, what if, when?

Scott Benner 14:41
What if it has other impacts on other things too, exactly

Liz 14:43
like, what if he has other if he has kids, and he needs to know, look, I have this autoimmune disease, this autoimmune disease, you're going to be more like, you know, I feel like it's his, his information that he should be privy to In the meanwhile, like I had found all these research medical journals. Yes, that states if you have auto immune thyroid disease, even if you're in range, like before you even start taking meds, you are much more symptom, like you have an increased it's not in your head. Basically, what you're like what they're saying. You know,

Scott Benner 15:16
that's why we always tell people we by the way, I'm a guy that makes a podcast. I barely got out of high school, but nevertheless, it's why I'm always saying to people like, treat the symptoms, not the test result, right? If you have Hashimotos and you feel a certain way, and that's a symptom of Hashimotos, but your TSH, the doctor goes, well, the TSH is okay, I still feel this way. What do you care what the test says? Ridiculous. Yeah,

Liz 15:40
and my, my daughter for a perfect example. So her TSH is optimal and perfect. She doesn't need meds yet. Her, you know, her free t4 is good, her t3 is good. They don't do reflex. They don't do reverse t3 up here. So I have no idea what the conversion is. It's not even an option for the endocrinologist to check off, but yeah, so she was feeling so symptomatic and and my husband also, I mentioned earlier, when we weren't recording that my husband, when he he found out that my daughter has Hashimotos, he also has type one, so he thought, well, maybe I should test myself to see if I have it. And he has Hashimotos as well. So he's in the same boat as my daughter, in that his TSH, right now is good? Yeah. So neither of them, you know, they might not leave meds for years, right? So what I was doing, you know, that whole year, so I was researching a lot on Hashimotos, and what I can do is there anything that they could take my daughter and my husband to help their symptoms while they're in this sort of limbo state where they don't need thyroid meds yet, but they are, it's not in their head. I can see what's happening. You know, my daughter's hair is falling out and, you know, she can barely move some days because her joints are hurting so badly. And I can't remember where I came across it, if it was on one of the Hashimotos groups, or I also belong to a Ehlers Danlos group, because I think some of my kids have that and so it might have. I don't know where I found it, but I came across this drug called low dose Naltrexone. In my mind, it seemed like the perfect answer for both of them, and then me as well, because I have, I was just diagnosed with fibromyalgia last year, so I have a lot of chronic joint pain and everything. So low dose naltrexone, at its normal dose, is used for opioid and alcohol addiction. And so it's a opioid antagonist, I guess. And so it just blocks the blocks the effects of narcotics. They found out that if you take it at a very, very low dose, like, you know, 0.5 milligrams, up to 4.5 instead of the typical 50 milligrams, that what it does is it lowers body inflammation, and it for a very brief time, like maybe an hour. So it it locks the endorphins to your brain, and then your brain realizes, hey, I don't have any endorphins. I better make more. And then it makes, it sort of spits out extra endorphins. And somehow, the mechanism with these extra endorphins is it lowers pain, lowers inflammation, which is not going to cure your autoimmune disease, but it potentially could help you from picking up another autoimmune disease, because it's putting your body in a state of, I don't know, so just, I guess helping with inflammation. You know, it seemed like a very low risk thing to try. There's, there's very few side effects. The main complaint is sometimes people get vivid dreams from it. You start off very slow, and you titrate up the dose, but then if you decide that you it doesn't work for you and you don't want to take it, there's no tape. You don't have to taper down. You can just stop. And there's no side effects from stopping. Yeah, there's no side effects, and there's no addiction to it anyway, it just seemed like the answer.

Scott Benner 18:59
So Okay, who did you start with? Like, because you, you probably should have gotten, like, a candy jar full of it and giving it to everybody. But where did

Liz 19:07
you start? I originally asked my doctor for me, and she said, No, I do have some patients on it, but before I start you on it, I would want to try these other options. And so she, she wanted me to try deloxetine, which forget the other name for it, but it's basically, it's a pretty hardcore pain med, okay? And researching that, I talked to so many people that had been on it, and they were like, run the other direction. I'm sure it does help some people, but it seemed like a scary option to try, because a lot of people, you know, they were, they were saying, you know, I was on it for one month, and then I decided I didn't want to. It wasn't for me. There were too many side effects, and it took me two years to get off of it. And I was opening up the capsules, counting out the beads, trying to

Scott Benner 19:54
wean myself, you know, what's it? Called myself off. And I delox,

Liz 19:57
the team d i. U L,

Scott Benner 20:00
I'll figure it out. Is it Cymbalta? Yes, yeah, it's Cymbalta. Okay.

Liz 20:06
Meanwhile, I had booked through one of our it was our local diabetes Facebook groups. I was sort of venting about all the thyroid nonsense that was happening with my son and and daughter, and at the same time knowing that if things got worse for my daughter, she was going to end up at the same clinic that my son went to, which, you know, they're great for many, many things, but I knew that thyroid wasn't one, yeah, yeah. So what can I do to help her in the meantime? So somebody on the group had commented clinic that I work for, and there's a really wonderful nurse practitioner that is great with thyroid. She's helping me with my thyroid. And so I booked, I booked all three of them in with her, and before I could even bring it up, like I had all these like arguments. Why I thought this was the best option for them. This is like, I'm ready. I was ready to go on fighting. I'm ready. She actually brought it up. She's like, well, there's one thing that we could try to help lower their symptoms. And she, she brought it up. So that's how we got it prescribed

Scott Benner 21:12
for them. So long did it take for you to notice it helping them? My

Liz 21:15
daughter was, I should have kept a journal, but I, I feel like it was like, within the first increase in dose, like, maybe not, maybe nothing, the first week or so, but definitely within the first month, I'd say, couple weeks. So

Scott Benner 21:29
what did you start her on? Like, a starter dose? How long did that go for? When did you ramp it up? Was this on the doctor's orders? It

Liz 21:36
goes through a compounding pharmacy. So because they they have to take the 50 milligram pill, and then, you know, put it in a capsule. And so we started on 0.5 it was like, every two weeks we would go up, up in dose. Okay, so it was like 0.5 to one, and then, you know, so it took a while to go up. I think she started my husband on 1.5 and six weeks, he was up to 4.5 so, so he went up quicker. She just wanted to go slower with my daughter, but yeah, so she was, she was taking anti inflammatories every day. You know, she was taking Advil every day because she was in so much pain with her joints. And she basically just, she stopped eating Advil, and she it helped her with her energy, you know, she was able to get back to school. And I feel like she's, she's not what she was before this all happened, you know, like she doesn't. She sometimes needs a little bit more, I guess, repair time after a big weekend. Or, you know, I was mentioning to you earlier that she does cheer, and before she was on this if she would do a cheer practice, I feel like it would take her the whole weekend to to get better or to get her energy back, you know. So any

Scott Benner 22:48
other impacts? So what? What stick with your daughter for a second? What impacts Did it have for her?

Liz 22:55
I think it helps her well, for sure, her her overall body pain. It's helped a little bit with her energy. And do

Scott Benner 23:03
you think energy because it's improving her energy? Do you think that not being in pain is giving her more energy?

Liz 23:09
It's hard to say. It could be both, yeah, and I feel, you know, like last year, she was giving she was coming down with strep throat all the time, or what she thought was, I think it was definitely strep throat once or twice, and then other times, you know, she would just have a she was always complaining of a sore throat, and I wonder if that was like her thyroid was, was sort of inflamed, and it felt like sore when she was swallowing. I'm not sure, yeah, yeah. Just just energy overall and joint pain for her, yeah, joint pain, yeah, yeah. Sometimes it would be in her hips, and then other times it was her back. And, you know, some of it could have been cheer related, for sure, because she does a lot of lifting. She's, you know, she's one of the the kids that I think has either Stan most. So she's very hyper mobile and flexible. And one of the things with that is that it's easy to hyper extend, and, you know, put strain on your your joints. Is she

Scott Benner 24:04
so cracky? Does she What does her back or neck crack all that stuff? Yeah, yeah, yeah. She feel like, you can't get it, like, to stop Arden. Using my Arden as an example, you could crack gardens back, it'll explode. And you could do it five minutes later, it'll do it again, yeah?

Liz 24:18
And that's how, that's how I am, too. I went down so many rabbit holes last year. I went down the thin All right? Thyroid one, the Ehlers, danlos rabbit hole. And originally I was thinking three of my kids and my husband. Have you looked into the the bitin score? What is this for Arden? Have you? It's the scoring system that they use for to diagnose the hypermobility. Oh, kind of

Scott Benner 24:40
yeah, there's think that's happened to Arden in a doctor's office before, like,

Liz 24:44
you get one point if, if your right elbow hyper extends, and one point for your left and your if your knees hyper extend backwards, if you can touch your hands flat to the floor, bending down, and if you can bend your you. Your thumb and have it touch your forearm, yeah, yeah. And then, so that's, like the, the major criteria. And then there's other things, like hernias and organ prolapse and stretchy skin, all that stuff I was thinking, and it's hereditary, right? So I was thinking, okay, my husband, he can easily pass he gets a positive I've diagnosed him with it.

Scott Benner 25:24
What a fun date. That must have been, honey. Come in the bedroom. He was like, oh, it's happening. And he's and you're like, can you move your thumb towards your form? He's like, this isn't what I thought was gonna happen. But okay, what else that's awesome. You diagnosed him, by the way, byton, B, E, I, G, H, T, O, N, scoring system, if somebody wants to look it

Liz 25:45
up, you know, I just assumed, like the kids, they they can all pass it to right, like my, especially my, my younger one, he's his middle, you know, like the ends of my, like the last joint in my fingers, they all bend backwards. You know, I have, like, the the tips of my fingers basically bend backwards, but also the middle joints on his fingers also bend backwards, so he can make a C, a backwards, C with his fingers, if he bends his fingers, you know,

Scott Benner 26:13
hold on. That just gave me the heebie jeebies. He's

Liz 26:15
so stretchy and so bendy. And then middle son, you know, he was doing, like, party tricks, you know, when he was little, like, his his head and like the back of his head, he can bend his back and it basically touches his back, you know,

Scott Benner 26:29
with the back of his head. Oh, so that wait, yeah, so he can tip his head

Liz 26:33
back and, like, basically touch the back of his head to his back. Oh,

Scott Benner 26:38
my God. Like a pest dispenser, yeah, yeah.

Liz 26:42
Interesting. He used to do this thing where he would bring his his foot up, like, bend his knee, and then bend his like, basically, his foot would end up, like, on his pelvis, but his knee, with his leg was pointing down straight. Like, it's hard to describe, but it's just

Scott Benner 26:58
super bendy, right? Yeah, Pence pence dispenser, don't do that. Yeah, that's crazy. I'm gonna start calling him that. Hey, Pez, what you start calling your kids. I want to be invited Felix. I want to be invited to dinner if that happens. Because if I feel like I'm the one who's like, like, brought that to fruition, I don't think he's gonna enjoy that. Tell me more about like, whatever, because are, is everyone using low dose naltrex? Like, and are you going poor paying for it because this insurance cover it? Well,

Liz 27:27
okay, so now the three of them were taking it. So, you know, I had my other son who, you know, the one with type one and thyroid, even though he's on on Synthroid. I thought, you know, why not? Like him, of all people, like, he has all this stuff. Like, let's help him out with his inflammation. He sleeps a little bit better, and he I think his mood is a little bit better with it, but it's hard. You know, his thyroid numbers are up and down. So my husband and son, they haven't had such a significant it is helping them. Like, I think it's helped my my husband's mood as well, but I think my daughter has seen the most significant benefits from it. But interesting, I wanted to talk about so on the there's a website. It's called LDN research, trust.org, and it has, you know, all the information about it. But when I went before we we started taking it, I I kept coming across whenever they talk about people with diabetes using it, doctors advise their patients to lower their insulin doses, because it does help with insulin resistance. So I was really careful when we started out. I was watching their numbers, and they both did have to lower their doses, and especially when we would see it when we were bumping up in dose as well. So it wasn't huge. It wasn't like what you talk about on your GLP episodes, but I'd say maybe 10% 15%

Scott Benner 28:50
I think that's a lot, by the way. I think that that's, yeah, that's awesome. Yeah. You know

Liz 28:53
that wasn't what we were going for, but it's, you'll take it's yeah for sure. Take a second and

Scott Benner 28:58
collect yourself. I want to read to people. I'm going to people. I'm going to do everyone's favorite thing, read the Internet. Low dose Naltrexone. Benefits for autoimmune conditions. Immune system modulation balances an overactive immune response, reduces auto immune attacks on healthy tissue, helps regulate T cell activity to decrease inflammation, reduces pro inflammatory cytokines, proteins that trigger inflammation, increases production of anti inflammatory cytokines, temporarily blocks opioid receptors, leading to increased endorphin production, higher endorphin levels improve immune system function and reduce pain under pain relief alleviates chronic pain associated with autoimmune conditions like joint pain and neuropathy, reduces central nervous system inflammation, which is called neuroinflammation, which is linked to widespread pain, slows disease progression, may help the progression of autoimmune diseases like MS or lupus by reducing systematic inflammation. For Ms, improves fatigue, spasticity. And neurological symptoms. For ra reduces joint pain, swelling and stiffness. For Hashimotos, lowers thyroid antibody levels and may alleviate fatigue or brain fog, inflammatory bowel disease, Crohn's and Ulcerative Colitis, colitis, excuse me, promotes intestinal healing and symptom reduction, may reduce systematic inflammation. Fatigue for lupus improves skin and joint inflammation for psoriasis and psoriatic arthritis, Sjogren helps reduce dryness and fatigue. Systematic sclerosis may alleviate symptoms like pain and stiffness, reduces chronic fatigue and brain fog, often associated with autoimmune issues, so it can help increase your quality of life that way, or by improving sleep, protects against neurological inflammation, auto immune conditions like MS or lupus, minimal side effects, provides a safer alternative for people cannot tolerate stronger immune suppressive drugs for insulin resistance. Insulin resistance is closely tied to chronic low grade inflammation, a low dose naltrexone, lowers pro inflammatory cytokines. So we know that's going to help there improves metabolic function. This is all under insulin resistance. Chronic inflammation disrupts the body's ability to use insulin effectively by reducing inflammation, LDN helps restore normal metabolic pathways. LDN can aid individuals with obesity related insulin resistance by reducing inflammation, some studies show it helps regulation in appetite, reduces cravings, which may indirectly improve insulin resistance. It can modulate the gut immune access. It says emerging evidence links gut inflammation to insulin resistance. LDN reduces gut inflammation, which may enhance glucose metabolism and insulin sensitivity, and there's potential benefits for type twos as well.

Liz 31:49
So yeah, Isn't it incredible? I mean, I'm like, Why? Why is not everybody on this drug?

Scott Benner 31:55
A number of months ago, art and Zendo tried to give it to us, but it's cash pay here, you can't get an insurance company to cover it.

Liz 32:03
Okay? So there's a workaround for that, like so right now, our PharmaCare is our government plan is covering ours, which I didn't know it was going to, but I was that was a pleasant surprise. So we there is a deductible on our PharmaCare, but we always reach it. I mean, it's huge, but because of all the diabetes stuff, we always reach it. So the 50 milligram pills themselves, I guess, are very, very cheap. And so what a lot of people do that can't afford the med is they dilute it in, like distilled water, keep it in the fridge, and then draw up from that, that correct dose, you know, so that you could have to mathematically work out how much water you put in and what the dose is. So that's one way that that it can be affordable for people that are not able to otherwise. Wow, I am taking it now as well. So I like, like I said, I'd asked my doctor, and she wanted me to try that Cymbalta first. And I was like, no, and then I ended up booking in with the nurse practitioner as well. And she was like, Oh, I have no problem prescribing it for you. I mean, that's way more sense to try something low risk before trying something with lots of side effects. So it is helping a little bit. I like my overall pain. I feel like it's helping my immune system. I felt like I was always one of those people that was, you know, I would pick up every cold or get sick, and I haven't been sick since I since I took it. But, yeah, I don't know. I think it's amazing. And I think the reason why a lot of people don't know about it, there aren't a lot of studies, because it is such a cheap drug, there's no motivation for people to do studies on it. I

Scott Benner 33:40
was wondering that. Because, yeah, the lady that talked about it for Arden and for Kelly, by the way, she's just a forward thinker. And it did occur to me, like, when your doctor was like, no, why don't you try this one that, you know, the sales people have already told me to tell you

Liz 33:55
about. I know, I know it's gross. It did feel like that a little Yeah, I really recommend it. And if you know, if, if people are interested, and they they want to reach out to me on like, through the the group, I'm, I'm happy to talk to anybody about it. And there is a great Facebook group too, like a LDN Facebook group with lots of knowledgeable people. So I think it's definitely worth trying if you have any autoimmune stuff.

Scott Benner 34:18
I mean, it's been a benefit for your family so far, you think, yeah, just looking

Liz 34:22
at the difference in my daughter, it's, it's made a huge, huge improvement. I mean, she was, she could barely pull it together last year with her school and and so

Scott Benner 34:35
you think it helped your one son who was having gastro problems. Do you think it impacted that at all?

Liz 34:39
You know, it's hard to say. So I jumped around so I was talking about how I thought that he was allergic to the Synthroid filler. And when we went in for testing, what happened with that is that, you know, I brought the actual a Casey, I sourced out Acacia powder, and then they also tested him. They crushed up one of his. Synthroid pills and tested him with that, and he didn't react to that. So I was wrong, and it was right. I'm

Scott Benner 35:09
not Is that a thing we brought up in your first recording where we didn't record your voice, or here I

Liz 35:13
got, I'm not sure. Well, okay, so just real quick. So I was sort of racking my brains like something he's, he's reacting to something. He's, I know he's allergic to something. I had this, you know, nagging feeling in my head, because he was, you know, had all these gastro issues, and I had read that you could be allergic to the filler if you have asthma and a grass allergy. So I went to the end of saying, I think he might be allergic to his Synthroid. And she, you know, basically looked at me like I had two heads. But she was willing to appease me and try to, you know, go through a compounding pharmacy and then I had the allergy testing done. So I had to tell her that she was right in that, but I was also right because it it turned out that he was allergic to something that we didn't know, and he was that's what was causing a lot of the gastro issues. So what did you figure out he was allergic to soy, which is in everything.

Scott Benner 36:04
So does he just breathe air now through a straw with a piece of cotton over it? Or how does he

Liz 36:09
Yeah, poor guy. I mean, he was already so limited in what he can eat, and at the time, he also had been vegetarian his whole life. He was never crazy about, like, the meat alternatives, but anytime that he would have one, it was soy based, you know, so he was, he was just getting, oh my gosh, yeah, even when he wasn't eating tofu or soy, he always hated tofu. But every once in a while, I'm like, Just eat it, you know, like, you need protein, and then he would eat it. And then, you know, probably for the the days after that, he was, you know, having all sorts of issues. And then, yeah, it was just very hard to narrow down, because there's, it's in, yeah, it's in everything. And his allergist does say that he's okay with having soy Letha sin and soybean oil because they're so highly refined that he didn't think that he was going to that. So we kind of eat those foods cautiously and just watch him. But anything with actual soy like soy sauce or soy protein, or, yeah, he can't have that anymore, and it does seem like it's, it's helping him. Like, yeah, last year we had, we ended up having a colonoscopy and a endoscopy, and because we also thought, well, maybe he's, you know, celiac, or maybe he has guessed, you know, gastroparesis or something. So all these

Scott Benner 37:25
different problems the body is just attacking itself in different places and ways. And it comes out in the real world, you know, the way it comes out, and then it sends you down all these rabbit holes. And it's just, it's, it's crazy, almost, that the doctors don't start with that. Like, I always think it's crazy, the doctor doesn't start with what's wrong with you. Well, let's keep in mind you do have an autoimmune disorder, you know, and the one you have is type one diabetes, but that's an indication that your body is looking at itself and going attack. So, like, why would it not happen? Like, just because they, you know, it manifested in your type one doesn't mean it's not happening in other places, smaller places, joints, fingers, you know, your your stretchy bits, your ligaments, like, that kind of stuff. Like, it could be happening everywhere, like, and it makes sense that it is right, like, so it's just so interesting that we skip over that, and it's, you know, because I don't know if we talked about it in this one or the the ill fated recording, but your son waited nine months to go to a gastro for the gastro to tell him, like, ah, it seems hard to me. Well,

Liz 38:34
it was actually, yeah, it was more than nine months, because I was looking back on my emails, and it was I had been asking to be referred for three years knowing that something was wrong. Yeah. I mean, I feel like one of the things that I wanted to talk about was just, and we've, you know, we've covered it, I guess, but just knowing that it's okay to push your doctors when you know that something is wrong with your kids. Because, had I not taken my daughter in and asked, you know, for the screening for the auto immune stuff. Maybe at this point she would have been diagnosed with depression, be on, you know, be put on depression. That's, you know, unnecessarily or and especially with women having this sort of invisible illness where you look okay on paper with your TSH, but you have a raging auto immune disorder attacking your thyroid. And there's legitimate journal articles out there saying that, yes, you it's a thing, you can be symptomatic and feel this happening despite looking normal on paper, right?

Scott Benner 39:34
Hey, did your daughter suffer with any acne? No, no. Not yet. Okay, well, maybe, like, maybe, like, a tiny, tiny little, but not like, persistent or anything, no. But

Liz 39:44
my second son, who's 15 and a half, he's starting, starting to, okay. Do you have any advice for

Scott Benner 39:52
that? Well, no, I just are. You know, in the last couple of years, Arden's been hit pretty hard, and the only thing that seems to like dull it is. The GLP, okay, so as you're talking, I mean, I'd be remiss to say, like, there's a bottle of low dose Naltrexone in my house that's meant for her that we just have never, like, done anything with.

Liz 40:11
Oh, okay, I wonder if that would help.

Scott Benner 40:15
Yeah, I'm interested, because in the end, it's inflammation, is what I'm thinking. Yeah,

Liz 40:20
right, just last night, when I was sort of gathering my notes and stuff, like going over, you know, I think, like months ago, I sent you an email with, like, links of all these articles and stuff. So I was kind of going over them again. And one of the recommendations, I think it was like, from the American Diabetes Association or something, if you have what, I guess is it's called poly glandular auto immune syndrome, like where you have type one diabetes and Hashimotos if you if you have somebody in your family that has that, what they recommend is routine screening of all your first degree relatives for other autoimmune diseases. And when I went in after finding Hazel. You know, my daughter and husband had that I went in wanting to have my other two kids screened. And they're a pediatrician who I really love, and she's always been great. She was making me feel like I was over the top and overly anxious about even asking that. And she, you know, she was like, why would you, why would you want to do that? Like, there's no reason. Maybe they don't want to know. Or, you know, wait,

Scott Benner 41:28
tell me that. Start that story at the beginning. Yeah. So

Liz 41:31
what I was saying is, last night, I was going over my my notes, and then I came across this recommendation that if, if you have somebody in your family, what they recommend is that everybody gets screened and even sent to genetic testing. It kind of hammered home that I wasn't, I wasn't that far off base, you know, wanting to get my other kids screened, you know, for Hashimoto,

Scott Benner 41:51
but the doctor just told you, like, why would you want to do that? Yeah, you know, she didn't

Liz 41:55
say the word crazy, but that was like, she's like, you're, you're, you're overly anxious, and she's, like, and rightly so. You've had a lot, you know, you have a kid with a lot of complex medical needs, but basically, chill out. You don't need to, like, look for it everywhere. You know, it was just, I guess,

Scott Benner 42:12
just say, I'm not looking for it. It just, it's here, it's here. I just

Liz 42:16
want to know, you know, like, so I can, yeah, so I can prepare. And maybe, yeah, I think it's good just to follow your instincts and and, you know, I wasn't wrong in thinking that they should be tested, you know, but maybe here in Manitoba, when they they have to come up with a reason, you know, when they're checking off that if they're going to get audited or something, you know, for sending unnecessary tests, I don't know, but

Scott Benner 42:44
it does feel to you like that some of it is about that, is that they just, yeah, I think so yeah, cost and I don't want to get in trouble, like that kind of thing.

Liz 42:55
Yeah. And then also, you know, she was, she was thinking that it would, it would create anxiety, and especially my older son, you know, the younger one probably wouldn't.

Scott Benner 43:04
I'm stunned that they wouldn't think that actually seeing your kids struggle and be sick would also not bring anxiety, didn't I mean, like, I don't understand, like, something's wrong, let's not try to fix it. That'll make you anxious. You don't think that something wrong is making me anxious. Just

Liz 43:23
like, let you know. Let's just sit back and wait for things to get really bad, you know, before we we fix it. And that kind of leads me to another strange thing that that happened with me this summer, and I guess, potentially still happening. I don't know, so I don't know if you remember, on one of your your Facebook Live things, I wrote in I was like, I think I'm getting diabetes. My son and my husband have it. The nurse practitioner, she ran the summer, or I guess in the spring, she ran my insulin hormone, just like she did a bunch of blood tests, right? And it came back as not flagged as low, but it was low enough that she assumed that I ate low carb. So she said, Okay, so you eat low carb, and I'm just like, No, I eat, like, tons of carbs. And she said, Well, you know, since you it could be, could be anything that's causing it, but since you have access to CGM, like, it might just be interesting for you to put one on and see what's happening. So I put one on anytime I've ever done a blood a finger Coke, I've always been in the fours, like, I've never even seen a five point something when I test my sugar, right? And so I put one on, and my average blood sugar was 6.5 and my time in range was, like, 80% in range, instead of, you know, like I assumed I'd be, you know, 96 or 98% in range or something, you know. And I was often in the range, but always on the high end of the range. And every time I would eat, I would, you know, I would go up to every breakfast, I would spike up to, like, 11 or 12. Yeah, and I would come back down, but I would, I would hit, like a 12.5 or, you know, I had a 14 at one point, which, in my head, I'm, like, I have diabetes. Like, this is like, and my brother, who is 55 or something, last Christmas, he was diagnosed with lotta, and he was misdiagnosed as having type two for three years. But anyway, so in my in my head, I'm like, okay, my brother has lotta, so it's clearly on my side of the family, and I have maybe just caught it in the very, very early stages. So my doctor gave me a standing order to go get like, a random glucose but every time, you know I I would go out, I'd see my blood sugar go I'm like, Okay, I'm 12. Okay, I'm gonna get the lab now. And then I would be sitting in the chair, and I'd see my blood sugar go down. So it was like, Yes, I was hitting those numbers, but I wasn't staying up there. And so I never, I never caught a lab value higher than nine, and had just aged out of the trial net like I had done trial net when my son was diagnosed, but like 16 years ago, and I didn't have any antibodies, but I know that you can develop them at any time, and I know that one of the things that can lead to an autoimmune disorder is being super stressed, which I Feel like I've been super stressed the last 16 years. Yeah, excuse me. Sorry, yeah. So this summer, I was like, Okay, this is like, I've just happened to catch it at the very early stages, and I found myself in this sort of limbo land again, because I couldn't my I couldn't get into an endocrinologist without a diagnosis, and I couldn't get the diagnosis without the lab result of the high blood sugar, even though I was going up to 1112 multiple times a day. But just not staying there, I was coming back down. You know, it's not significant, like having a I was mostly hanging in the high sixes and sevens, and it's still in range, but it's not, I was never seeing fours, and I was never seeing steady lines. I was like, up and down and up and down all the time, you know? And I remember, like, you said, you put a sensor on and you couldn't, no matter what you did, you couldn't get over a certain number.

Scott Benner 47:12
Yeah, I had to

Liz 47:14
eat. I think it's probably 10. Like, like, yeah, like, I'm trying to think the translation of the numbers.

Scott Benner 47:20
Well, I can, I can get you that hold on a second. But I'd eat three slices of pizza and then, like, eat a box of, like, sugar candy over top of it to get my blood sugar to once over 160 Yeah, which would be, what, like an 8.9 Yeah, yeah. And, I mean, so I haven't done it in a couple of years now, but, I mean, I ate three slices of pea. I was forcing the food down. It was way too much food. So like, Here, give me, here's a whole bunch of fat like that. Slow my digestion way down. And then I forget what the candy was, but it was probably something like bottle caps. Like, I was looking for something that was, like, just sugar, and then I just ate a bunch of that over top of it, like Swedish Fish, like that kind of stuff. That's what I had to do, not having diabetes to get my blood sugar over 160

Liz 48:03
Yeah. And sometimes I would be, you know, I was like, I was out for a hike, and I was I hadn't eaten in, you know, a couple hours, and I would be, like, an 8.9 or something. I'm like, this is this is not right, you know, like, I know something is off. But then I would talk to my doctor, and it's like, well, it's normal, you know, people go, people's blood sugar goes up, you know. And my last a 1c was 5.1 she's like, I can't send you to an endocrinologist with a 5.1 so let's wait until you're due for a new a 1c and then, then we'll, we'll go from there. And meanwhile, this I had started low dose naltrexone, so I don't know, like, I don't know if that played any part in it, if, if that is somehow helping my blood sugars a bit as well. It's, it's very strange. So I went, in September, I went for a new a 1c and my a 1c was 5.1 again. So no change. So I'm like, Okay, well, maybe, maybe my blood sugar has always been doing this, and I haven't known, because I haven't worn a sensor before, which is possible. I've just never, never seen a number over four. And then when I was wearing a sensor, I was hardly, like, hardly ever, for, you know, I if I did dip down, it was like, I would have that reactive hypoglycemia, where I'd have a fast acting carb, and then I would tank, and then I would go back up again, though that, but that was the only time I was into the forest, was after I'd had a fast acting sugar. And then I would, I would drop really fast, I don't know. So I still think something is potentially going on. But then so I stopped. You know, I can't wear my son's sensors all the time, so and my numbers were, they were actually kind of gradually getting better. So I was like, I know. I'm not in any danger of going into DKA. I'll just keep an keep a watch on it. And so the other thing is, only endos can order the type one antibody testing, so a normal doctor or any other person in Manitoba can't. Order that, and I was too old for trial net to test it again, so I felt like I was sort of stuck in this point of like I had to get worse before I could get better. And T seal is not available in Canada yet, but it's on my list of things, like, I'm gonna start making some noise. Like, I've already, I've spoken to the health minister at gift function, like a diabetes function. I was like, we need to start the pro because it's on the pipeline of drugs that are coming to Canada, the T seal. But as it stands now, if nothing changes when that drug is available here, if nobody can order antibodies to know if somebody is in the early stages, nope, that drug is not going to be available for people here. So are

Scott Benner 50:40
you genuinely worried that you have diabetes, or will have diabetes, or do you think you're do you think you're now looking too closely at things like, I don't know,

Liz 50:48
I don't know, like I so again in September, I retested my ANC, and my ANC hadn't changed, but I had also upped my LDN dose as well. So I don't know if I have no idea, I don't know what's going on. I've and I know that Lada, if it is Lata, it could take years, you know, for it would

Scott Benner 51:11
also, I mean, listen, I'm not saying you're not, like, not not seeing ghosts, or you are seeing ghost or whatever. But, I mean, your husband has type one, right? So it would be crazy if you ended up having type

Liz 51:22
one, I know, wouldn't it, yeah, but my brother has it, but your

Scott Benner 51:26
brother has Lata and, yeah, and has, he has his, is his lot of still? Like, is it still Lata? Like, is it still slowly happening? Or do you think he's full blown type one?

Liz 51:35
Oh, well, I think no, he's full blown now, but, like, it was over sort of three years when he he's funny in that he didn't tell anyone it was happening. So when he was when he thought he was type two, for three years, he didn't tell me, which, if he would have told me, I would have been like, go get your antibodies tested.

Scott Benner 51:54
I might have moved him along. Yeah. Also, by the way, I want to say, if you do end up listen with your your brother's situation, your husband's situation. Maybe this is the secret sauce to giving kids, like, a bunch of different autoimmune issues. You know what I mean? Like, yeah, maybe you, you, I hate to say but like, maybe you will end up with type one. Then you'll be able to step back and go, Well, it does make more sense that my kids all have allergies and these different issues and the joint pain. Like, it does make more sense now, because they're getting it from both bloodlines, basically,

Liz 52:24
yeah, yeah, yeah. So as it is now, I'm not, I'm just, it's sort of on the back burner, like I'm, I'm gonna watch out for it. And the other thing is that I did, I lost a lot of weight, you know, and I'm, I'm small to begin with, and, like, over the course of this last year. But it also coincided when I started my ADHD meds, which lowers your appetite a bit. But despite that, I was still, I felt like I was still eating, you know, a normal amount. I didn't pay any attention to my weight loss because I knew I'd also recently stopped migraine medic medication that sort of made me gain weight. So I'd stopped that so I wasn't, it didn't raise any red flags for me that I was losing a little bit of weight. But then when I in the summer, when all those, you know, blood sugar, blood sugars, I it sort of dawned on me that, yeah, I had lost a significant amount of weight since the year before. Yeah, and, you know, I was, you know, I felt like I was peeing more and more thirsty, and

Scott Benner 53:21
it sucks that it's all in your head, to be perfectly honest. Like, it just, it's, I mean, you've been looking into people's health for so long, by the way, I've lived through this. I've lived with people going, like, hey, stop looking into our problems. And I'm like, you still have problems. Like, nobody's really gotten to the core of these issues. Like, yeah, do you really just want to, like, go, Okay, I guess this is it, like, this is as good as it gets. And we'll just, I think you need to keep looking. But it's funny. It isn't crazy that you could be on the path to it, and it isn't crazy that you might just be looking too hard. That must be frustrating, I guess is my point. Yeah.

Liz 53:57
I mean, you know when it was happening, I was pretty stressed out about it, but now put a sensor on recently, just to, sort of, just to sort of check in and see what was happening, and my numbers were a lot better, but I was having, I was having more lows, which is straight and again, like, maybe it's the LDN, maybe I was like, maybe there was something that my body was fighting off this summer for a couple months, that was creating, I have no idea, but it's just, I'm going to keep an eye on it. But it was just, I thought it was interesting in that other people in that are living in that experience right now in Manitoba, they are stuck. They would basically have to get to the point where they would go into DKA before they could, you know, like, it's like you have to get you have to get sick before you can get better. And same thing with with Hashimotos in Manitoba, they won't start you unless you get lucky and get a doctor that's willing to treat you earlier. The protocol here is you don't even. Start medication until your TSH reaches 10, and then they put you on meds for the first time. I don't know if, when my son was diagnosed, if that's, if that's what they waited for him to get to I'm not sure. But anyway, yeah, it's, it's, it's weird. But my son, also, he has a diabetes alert dog. Now his dog had been alerting me, and I thought it was just because, you know, she was looking for attention. Or, you know, like, sometimes I would go in at night, if, if I go in to treat a low blood sugar for for him at night, sometimes she will alert me. Instead, I think when he's lying down in bed, she doesn't know, like, where to paw him, and so I just thought she was alerting me about him. But then when I put the sensor on a couple weeks ago and saw that I was dipping down, it was like, well, maybe she really, was truly alerting me, because she's trained to alert anything below, like 4.7 Yeah. So if, if I was, you know, like, even if I was a 4.1 and I was, you know, this last couple weeks, I was, you know, getting down into the high threes. So anyway, I just, I thought that was interesting. And if you

Scott Benner 56:12
end up with type one, you're gonna have the biggest I told you so ever, I mean, it's not gonna, it's not gonna be super satisfying, but, you know, you'll have it. Yeah, I

Liz 56:20
recognize that about myself is like, you know, I do go down these rabbit holes and I hyper focus on medical stuff because I feel like I have to, I have to have all the knowledge for my family, because I know the doctors aren't going to be pulling all the pieces together. And I have great respect for doctors and but I also just know that, like you said, it's not like AI, where it's not an algorithm where, like, if you if you name one more symptom, they're not going to say, Oh, it must be this auto immune disease.

Scott Benner 56:49
You can't put it, you can't put it together. Like, it's too broad, sweeping for, I think, for the generalized human mind to just especially an endo who's doing a bunch of different things, there's no way that thyroids on the top of their list. Like, you know, like, people know, like, we use a doctor that's local here, but she's dug in on this stuff. You know what? I mean? Like, she's spending her days really, like, closely, considering these things, most endos are treating type twos, and you're walking in there going, like, I have a thyroid issue, and they're like, oh, thyroid, let me look at the thing. Then it that it's green on your test. You're okay. I mean, that's really what's happening to you. You know what? I mean, yeah. So, and meanwhile, I was doing a little like looking while you were talking, just now, the observed increase in frequency of Hashimotos can be attributed to combination of different factors. So, yes, it's been increasing over decades. Partly, they think it's improved diagnostic techniques. So you know that they're you know that you have it, that the medical community has become more aware of it. There's also some stuff about iodine intake that could have impacted it, but also environmental toxins like industrial chemicals and pollutants, heavy metals, radiation exposure, hereditary factors, dietary factors, processed food and additives increase consumption of processed food may contribute to inflammation and immune system dysregulation, right? Like there's chronic stress, there's a lot of things that have happened in the last 40 years that impact this inflammation, and I think you're seeing what comes from it now, you know? So, yeah, one

Liz 58:19
thing that I wanted to mention too, which I found super interesting on my deep dive. You know how a lot of doctors are, endos are reluctant to prescribe an addition of t3 medication, and they say, you know, it's, it's so

Scott Benner 58:35
that's not necessary so

Liz 58:36
rare that it would work, right? So I feel, I feel like I discovered, I didn't discover it, but I came across a definitive thing that would, you would be able to tell if, if you would be a candidate for the t3 which it was super interesting to me. I had no idea, you know, I knew that the thyroid is produced in the body, and it, you know, converts and changes and everything. So the genes that are responsible for making your thyroid hormones are called the and I could be saying it wrong, the diabetes genes. And there's, there's three types of them. There's like the Dio one and Dio two, Dio three, and they all have their their mechanisms. But I found out, and again, this might be a link to your your bipolar question that you always ask. So originally, when I came across this, I was like, that's when I wrote that email to you. I was like, I have to tell Scott this. Like, this is the link. This is the missing link. If somebody has a polymorphism or a variant in their diabetes two gene, they are the people that need an addition of a t3 med. Isn't that cool?

Scott Benner 59:47
Wait a minute. Seriously, yeah, say that again.

Liz 59:51
Okay, so if you have a polymorphism, a genetic like a genetic mutation of your. Diabetes gene number two, you are the person that likely needs a combination t4, t3, therapy.

Scott Benner 1:00:09
How do we find that out if we have the polymorphism of the blah, blah, blah,

Liz 1:00:13
blah, it's specifically called the E, H, r9, two, a, l, a, dash, D, i, o2, Gene. And there are other Hold on

Scott Benner 1:00:22
a second. Thr, go ahead, boy, hey, listen, you get out. You ever go outside? You ever see the sun?

Liz 1:00:30
Thr, so my husband was gone like a year? No, I know, according, my husband was gone a year. So this is what I would do at night. I would like read medical journal articles.

Scott Benner 1:00:39
Go slow, T H, R, T H, r9,

Liz 1:00:43
two, a, l, a, yeah. Dash, D, I O, 2o, or zero,

Scott Benner 1:00:54
uh, diode, 2e,

Liz 1:00:55
I o2, yeah, the the Dio two, polymorphism, diabetes. I'm

Scott Benner 1:01:02
asking the internet about the test for it, but you got deep, it's

Liz 1:01:05
probably just a genetic, genetic like you would have to go to a geneticist or get your your raw DNA sequencing done, or, or, but if

Scott Benner 1:01:13
you have so, if you have this, you need the t3 Yeah,

Liz 1:01:17
most likely, I think. And so there's this whole, I mean, there's a whole list of things that the people that have this variant have. So I couldn't find any articles that specifically talk about this variant and type one diabetes, but it talked a lot about people with Hashimotos with this variant and that so it causes insulin resistance. So a lot of people with type two diabetes, this is the genetic factor that would cause them to have type two diabetes, obesity, hypertension, osteoarthritis, dementia, like a lot of neurological things, dementia, thyroid, cancer, mild cognitive impairment, bipolar. There it is bipolar disorder. So the people that have this variant, it could be the cause of their bipolar, I guess. And not to say that if you do have this variant, you're going to have all these things,

Scott Benner 1:02:10
sure, sure. But if you have these things, and you go back and find that variant, it's a AHA situation. Yeah,

Liz 1:02:15
there are gestational diabetes. Yeah, it's, I don't know. I just found it super interesting. Yeah,

Scott Benner 1:02:21
no. And you hadn't had sex for a year, so you were interested by almost everything. I don't know if, did we talk about it in the first part where your husband had to go away for a year for work? Yeah,

Liz 1:02:32
I talked about in the first part, he was on sabbatical, so he was gone a lot, and then I felt like that that year, it was like the year of health stuff, falling apart. So my, you know, my daughter and my son's thyroid being totally mismanaged, and then my husband getting diagnosed with Hashimotos. And then he also, he's going for a celiac scope tomorrow, like his celiac antibodies were at the high end of the range, so not, not technically out of range, but they're high enough, and he has Hashimotos and type one. I'm like, Well, yeah, chances are you're gonna You

Scott Benner 1:03:07
guys better get in that bubble that John Travolta had and start eating oxygen. I think that maybe is the only answer for you. But yeah, in the end, though, you just are a family that's kind of riddled with auto immune issues.

Liz 1:03:17
Yeah. So I came across another like, if you're looking for an argument to give to your if, like, if your doctor is reluctant to try t3 another thing that you can you can say is you can say, okay, test my ferritin before you give me the t3 and then give me the t3 and then test my ferritin after. And if your ferritin goes up, that shows that the t3 is is working, because the reason why your ferritin was low is that you you're not having the proper conversion. And really. So, yeah, I thought that was also interesting. That's awesomely Interesting. Yeah, so the quote was measuring serum ferritin before and after t3 therapy may prove useful in the diagnosis of thy rate hormone resistance.

Scott Benner 1:04:04
Can I have all your notes? Are your notes typed in front of you, or are they written on like, I

Liz 1:04:08
scribbled out like, six pages of notes last night, but I can send you the links to all these things, but and then

Scott Benner 1:04:14
please listen to me, yeah, send me all the links and take photographs of your scribbles and send me the photographs, okay, and I'll have, I'll just let chat GPT turn it into text for me so I can look at it. I would love to. Okay,

Liz 1:04:27
you're gonna love this. So in one of the last endo appointments, this was even before I found out his TSH was at 31 luckily, we meet with the educator first. And I really, I love our educator. She's great. She also has type one, and she's so nice.

Scott Benner 1:04:43
She's been in Canada for so long. Everybody, no matter how much they screw you're like, I love these first they're lovely people.

Liz 1:04:48
Yeah, well, the educator is, you know, she's great. She's great. So I, I completely vented to her, you know? I said, when we were told about his thyroid, we were told it wasn't a big. You. And, you know, I didn't do my research, and since then, I've learned all the stuff that should have been told to us. And I know that, you know, maybe part of it is they're they're not wanting to overwhelm the type one parents, because they know that such a big thing that they, you know, it's like minute to minute, but the thyroid is huge, and I didn't realize I should have put it together, because it's the same doctor, it's the same clinic that we see for his thyroid, that we see for his diabetes. But I in my mind, they were completely separate, and I never connected them. But then I find these research articles, and I actually just posted the links of them. The other day, somebody was asking about them on the Facebook group, like, if they were connected, they are so closely connected that if one is out of range and mismanaged, it directly affects the other. So for instance, if you have high blood sugars rampant, high blood sugars all the time, it's going to affect your thyroid function, and vice versa. If your thyroid is not being medicated properly, it's going to make your blood sugar harder to control, and it's like this, you get stuck in this vicious cycle. I feel like it's important enough that you feel like there should be information sessions, you know, it would also be a way to, you know, for the type one parents to connect with other parents. It's it can be a very isolating, lonely disease when you know your friends and family, they try to understand that you don't, you don't really know, unless you go through it yourself too, right? So I can see how it would be extra work for them. But when you get diagnosed with diabetes, there's, you know, you go through training, and you go, you you get, sometimes a binder sent home with you, you know, like you it's like stuff that you have to know. And I feel like there's stuff with maybe not as much, but stuff that you should know with thyroid that we weren't told, and I had to find out. And I, when I said that to the endocrinologist, I said, I feel like I had to do my own research. And she said, Well, you don't have to do your own research.

Scott Benner 1:06:58
Did you say, Well, I was waiting on you, and it wasn't happening,

Liz 1:07:01
you know, like, for instance. So I don't know. Maybe you know this, maybe you don't. But did you know that if you go for your thyroid test on like, morning fasting, your TSH is going to be significantly higher than if you go, like, two hours after eating, like post pan, friend or I can't say that. You know

Scott Benner 1:07:22
what I mean. Post, oh, Jenny and I went over this pro post, real, prandial, all right. Well, figured out. So I

Liz 1:07:31
have an article that says, like 75% of the patients in this study were reclassified when they tested them with a morning fasting test versus the afternoon test when they had already eaten. Like, that's significant. So that means that people could be getting the wrong they could be getting the wrong dose or not getting a dose change when they they need one. No, for sure, because, you know, they're like, Oh, your your number's fine. You're like, in range. It could look optimal when it's out of range. And so 75% of the people in the study were reclassified as subclinical. Because that's

Scott Benner 1:08:08
a significant number, by the way, it yeah, very significant. So just listen to Scott medicate the symptoms there. I'm taking all the thinking out of it for you, if you have thyroid symptoms, and did medicate the symptoms till the symptoms are gone. Yeah,

Liz 1:08:23
and maybe your doctors are looking at the time that you did your blood like the timestamp on when you did your blood test. But maybe they're not. Probably not. I feel like it's important for people to be aware either do it one way or the other, but stick with that, you know, or just always do your thyroid test with morning fasting. I want

Scott Benner 1:08:42
to tell you, Liz, I'm I'm going to turn this episode around very quickly, and it's the first time. I'm going to send it to art and tell her like, I'm not going to pay for college if you don't listen

Liz 1:08:52
to this. Oh, and the other thing did you know about biotin? Like, before you do your your thyroid tests, depending on, I guess, like different labs would use different assays or whatever, but it's really important to stop your supplements that contain biotin before you do your, like, a couple days before you do your thyroid test, because that can also falsely lower the lab value. Like, it's not going to affect your actual TSH level, but on the lab it will show up as lower than it is. And also eating, like, if you're eating a bunch of foods, like, if your diet is, like, rich in biotin, like eggs and pork and like, you can do an easy Google search of like, biotin rich foods. And so ideally, you would stop eating those a couple days before your test, and stop your supplements that contain biotin, because you don't want to have anything that's going to skew your results, especially if, if you know you're super symptomatic, and you're hoping that your doctor is going to increase your dose. When you go in there, and you've had a bunch of bio 10 and your your number looks a lot lower than it is, they're they're not going to change your dose.

Scott Benner 1:09:58
You are a font of information.

Liz 1:09:59
Yeah, look at you right. Why did I have to do my own research? Scott, I don't know,

Scott Benner 1:10:04
but at least you did it. This is awesome. Seriously, you should put together a little like a bullet. Listen, you don't have the outlet for this, but if you put a bulleted list together of the things that you figured out, I would absolutely like put them out for people to look at.

Liz 1:10:18
Yeah, I'll do that. I'll do that for sure. 1,000,000% Yeah, I don't know. I just, I feel like there is lots of valuable information that should have been presented. No, for sure.

Scott Benner 1:10:32
Listen, I have a I have a dream where eventually we can, like, go into people's I always have this, like, dream of like, can you imagine if you took a very smart entity and let it just watch the Facebook group and come up with ideas about, like, what are the questions people have? What are the answers to those questions? What are complaints people have? What end up being the answers to those questions, like, that kind of stuff. So you could just these communities are awesome, right? But it's still sort of, I ask a question, I get my answer, I go away. I hopefully I'm better off. And now my question, my answer, disappear. They go off into the ether, right? Which is what keeps it's also important, by the way, because it keeps the group functioning, and, like, you know, current so that new people can come in, it is actually really important. But, you know, I just, I look forward to the day when, like, I, you know, I think I said this in the first interview that nobody's gonna hear. But I just, I look forward to the day where we're all just talking to our computer and making sure that it knows everything about us, so that it can say, Well, have you considered this? Because it can actually keep all this stuff straight, you know, like, you're keeping it straight in your head as best you can, and you're doing an awesome job. And still it's, it's still storyteller ish when you're telling it, like, oh, then this happened, I forgot to mention this, oh, biotin. Like, you know what I mean? Like, what I want is, hey, computer, I'm going to get my blood draw two days from now, or, you know, two weeks from now, for my thyroid. What are the things I'm supposed to be doing? Well, stop taking your multivitamin, you know, don't eat eggs this week. Like, blah, blah, blah, because you're having symptoms, and we don't want the doctor to see a false number. We want your medication to get adjusted correctly. Okay, great, right? You know, the

Liz 1:12:16
other thing that I had no idea, and again, this was just like when I was going over my notes last night on an article that I had read, but I missed this, this tab of it, so they're saying so people with type one that have hypothyroidism, so they have a lower absorption of glucose, like their body has, like, a lower ability To absorb glucose, and so there's also, like, lower hepatic glucose uptake, lower post absorptive glycemia. That's

Scott Benner 1:12:49
now you're just making stuff up, but I know I'm

Liz 1:12:50
just making words up, and you need a lower insulin dose in diabetic patients, and then you need to raise your insulin dose after you start replacement therapy? I never knew that. I didn't, you know, I always thought like, why are my husband and son, like so prone to hypoglycemic events? You know, I'm thinking it's because I'm bad at managing diabetes. Well, maybe it's because he has Hashimotos and his body doesn't absorb glucose as much as he should. Or maybe when he has a an increase in his his Synthroid, I need to his ratios a little bit because maybe now he can have a little bit more insulin. I never thought of the correlation between the two diseases, but it makes so much sense that they're so closely related. Yeah,

Scott Benner 1:13:39
and in fairness, even, you know, for me, like, if you've listened to the Pro Tip series, at some point in there, you'll hear either I or Jenny say that a, you know, an ill, managed thyroid issue is going to impact your insulin use. But we don't go into deep, like, you know, like deep conversation about it. But it's absolutely true, you know. And not a thing again, that people think about, I think,

Liz 1:14:01
yeah, it's interesting, yeah? I just, yeah, I thought that was it is. I thought that was very interesting. And especially about the, you know, like, so that's, like, your the hepatic glucose uptake. That's what I assume they're talking about, like, the the glycogen stores,

Scott Benner 1:14:16
right? Yeah, well, I mean, we need to get someone on this. It's not you, by the way, like, You're doing a great job, but like, why isn't somebody digging into this and making this information that's easily digestible, that's shareable, that, you know, everyone shouldn't have to get to the point where they're like, oh my god, I think I'm gonna die. I gotta figure something out for myself. Like, that's, that's, you mentioned it earlier, but it's what, it's exactly what up like, You got to this point, probably because you love all the people that this stuff is happening to, you had a bunch of time on your hands, and you were like, you know, like, I gotta figure out what's happening to these people. But for most people, they're just gonna struggle through their lives. And like you said, struggling can look like a lot of things. Could just be like a what comes off looking like a bad attitude, right? Or brain. Bog, or I'm tired all the time, and how that impacts your life and what you don't do, or, or, how about, like, you know, Gastro issues. Like, oh, I'd like to go to the city and see a play, but I What if I can't find a bathroom? Like, like, you know, I mean, like, all the different things that happen to the point where, you know, their families, though, that'll go generations telling stories to each other, like, Oh, we've just got a weak stomach, you know? Or, you know, like, I heard a one one family say all the time, it's so coarse, but like, they're like, this person, like, came into this family, right? And one day just said, you guys talk about a lot, but when you look at the family, there's a lot of auto immune through them. Like, wouldn't it be cool if they didn't have to talk about a lot? Like, you know what? I mean, like, like, Wouldn't it be cool if your daughter didn't need to go to, like, you know, take two days off to recover from a day of activity. And if there was an answer, if it and, Jesus what? If it was low dose naltrexone, or, you know, what, if it was getting the thyroid balanced out better. Like, like, these, yeah, things that look like, I think these things that people spend their lives thinking, well, this is just my lot in life, like, I wonder if they couldn't be helped,

Liz 1:16:07
yeah, or, you know, it didn't. It didn't turn out that way for my son. But somebody else could be allergic to their their synth, right? Or their level of fillers, you know, because they also are allergic to grass, and they can't have, you know, and they should maybe just try another thyroid Med, exactly.

Scott Benner 1:16:23
And also, like, Listen, if you don't make yourself crazy or kill yourself, you might still figure out what's wrong with your son. Because it doesn't sound to me like you're gonna stop, yeah,

Liz 1:16:32
and I feel like, you know, he's been, he's been collecting, he's been collecting allergies his whole life. And I don't think I feel like I just can't sit back and relax. And you talk about that whiteboard you have in your office, I feel like I have a whiteboard in my brain, and I'm always making notes of things that are happening with him and what else could potentially like. I can't remember what it Yeah,

Scott Benner 1:16:55
seriously, take time for yourself. But I think it's I think it's great. It shows an immense amount of concern and thought and love, and I'm sure he'll appreciate it one day if he doesn't. Now I but I want to, we're a little long here, so I'm going to end by telling you that I really appreciate all the effort you put into all this. Thank you. No, no, I'm no one else is interested. I'm, I'm supremely interested in this,

Liz 1:17:18
and I knew you would be interested in the bipolar connection, because I was like, Oh, I have to tell Scott about that. No,

Scott Benner 1:17:24
all of that I'm interested in. And again, this was said in the previous recording that nobody's going to hear. But I shared with you that I take a fair amount of crap from people with type one who don't have other issues, who are like, you know, this guy talks about thyroid too much. And I'm like, I mean, and you brought up back when I said that, you said, what was the number? How many in 10 people with type one also have thyroid issues? Yeah,

Liz 1:17:49
17 to 30% of people with type one have autoimmune thyroid,

Scott Benner 1:17:53
right? So that's worth talking about in a group of people who have type one

Liz 1:17:58
for the diogene polymorphism. Morphism that also is quite common in like the general population. So it said that it occurs in 12 to 36% of the population. So that's huge as well. So it's not a wild question to ask your your Endo, you know, like, if your insurance is going to cover genetic testing, or, if you want to, you know, pay for the sequencing yourself. Like, I feel like it's worth it to know, you know, if, if you're one of those people that you know this is, this is like a real reason that I need. I need an additional three

Scott Benner 1:18:35
and one day, and probably not in our lifetime. But who knows them? AI's going quickly, but like, you're just basically talking about biohacking. You're talking about getting, getting your personal settings correct, you know, with chemicals and etc. I don't know, we all grew up with like, a, like, a, I don't know, an uncle who was a dick or something like that. Like, imagine if he wasn't, like, you know what I mean, like, imagine if your uncle wasn't a dick. What if his ferritin was low because his blah, blah, blah didn't uptake t3 but like, you know what I mean? Like, that's unfair for him to live his life that way. And I don't know, like, I know that's difficult. It's harder. It's, you know, it's easier said than done to figure these things out, but at least if people know to look for them, and doctors don't stand in their way when they're looking for them, insurance doesn't stand in their way. Like, maybe you get to go live the life you're supposed to live instead of the water. And, you know, like,

Liz 1:19:22
especially with people with with bipolar, like this one article was saying it, it speculates that bipolar disorder is a form of cerebral hypothyroidism. This one article was they were had great success with giving people with bipolar, it was like, actually a high dose of levothyroxine, and that was helping these people, like putting these people in remission from their bipolar. Because one theory is that people with bipolar, it's because they can't convert the the free t4 to t3, yeah. So. And we have, we have a friend that is, is going through that like, you know, he has, he thinks he has bipolar and, and it breaks my heart, you know, like looking at all this information, you know, and there's so much stigma with mental illness and, but maybe bipolar is not a mental maybe it shouldn't be classified as a mental illness. It should be classified as a, you know, like you, like an autoimmune disease. And there's, if there's just something like not converting in someone or, you know, they're it's an inflammation thing, you know? And it's,

Scott Benner 1:20:31
I, I'm with you. I, I'm telling you right now. I don't know much, you know what I mean, like, and you could look at my, my educational background, and say, I don't know why we're listening to this guy, but I've just had 1000s of conversations with people, and I don't know it was a few years ago, I was like, Why does everyone with type one? When I asked them about other autoimmune diseases, why does so many of them get to an uncle with bipolar? That just can't be a coincidence,

Liz 1:20:55
right? Yeah, so what I what I think is the link is, I don't think it's the type one bipolar link. I think it's the people that have maybe undiagnosed Hashimotos and maybe this variant, yeah, you know, it's like, it's the hush, it's the it's the thyroid connection, rather than the type one, like, type one is connected to thyroid, and thyroid is connected to bipolar, maybe. So I think everybody, yeah, everybody should get their auto like, their antibodies tested. Yep,

Scott Benner 1:21:22
I appreciate this very much. It's a high likelihood that you'll be back on the podcast one day, but let me thank you, as if I'm never going to talk to you again. I really do appreciate

Liz 1:21:31
this. Thanks. Thank you so much. Scott.

Scott Benner 1:21:33
No, sir, will you please send me all the links and your notes and everything. Would you do

Liz 1:21:37
that? Yeah, yeah, I apologize in advance for my scribbles. No, I'm telling you, you have

Scott Benner 1:21:41
no idea. You drop an AI and you say, transcribe this, and it just writes it out. It's awesome. I don't know what you people aren't doing out there, but it just works so well for some things. It, by the way, it doesn't work well for other things. But when you find what it works well for, pretty awesome. Let me let you go. Hold on one second.

Liz 1:21:58
Okay. Thanks so much, Scott.

Scott Benner 1:22:06
Arden has been getting her diabetes supplies from us med for three years. You can as well us med.com/juice, box or call 888-721-1514, my thanks to us, med for sponsoring this episode and for being longtime sponsors of the Juicebox Podcast. There are links in the show notes and links at Juicebox podcast.com to us, med and all of the sponsors. Today's episode of The Juicebox Podcast is sponsored by the Eversense 365 you can experience the Eversense 365 CGM system for as low as $199 for a full year visit ever since cgm.com/juice box for more details and eligibility, if you or a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective. The bold beginning series from the Juicebox Podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginning series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698 in your podcast player, or you can go to Juicebox podcast.com and click on bold beginnings in the menu. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording, wrongwayrecording.com. You.

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#1412 Life Coach: Anonymous Female

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A woman in her 50s (anonymous T1D mom) seeks advice from Scott on leaving a psychologically abusive relationship.

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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
Friends, we're all back together for the next episode of The Juicebox Podcast. Welcome.

I'm hoping that this episode becomes a series. I have a couple recorded already, but this is my first one. I asked people to reach out if they wanted a life coach. And to be perfectly honest with you, I was being sort of light hearted about it, but then I got a real request. Today's episode is with a woman in her 50s who wishes to remain anonymous. She knows about me because she has a child with type one diabetes, but this episode is not about that at all. This is about being in a psychologically abusive relationship that she liked to get out of, and she was looking for advice. The reasons that she came to me are revealed within if you're looking for a pretend life coach who has a podcast, reach out to me through my website. It doesn't have to be about a serious matter. It could be about anything. Nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D drink. Ag one.com/juice, box. You

this episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter. Learn more and get started today at contour next.com/juice box. Make better sleep your New Year's resolution with cozy Earth best selling bedding, because quality sleep is essential for managing your health. Learn more at cozy earth.com and don't forget to use the offer code juice box at checkout to save 40% off of your entire order. Today's guest is going to remain anonymous, so we're not going to use any kind of names, and we're going to be pretty vague about other things that could be identifying. But why don't you tell me a little bit about yourself as much as you're comfortable, and then we'll get into your

Anonymous Female Speaker 2:14
story. Okay, I am a longtime podcast listener, Juicebox Podcast. I'm the mother of a type one, and that's how I found the podcast. And when Scott proposed this new series where he was going to coach us, I thought this would be a great opportunity for me to get some wisdom from someone I respect, and to bring some attention to the kind of situation I'm in, which is, to be more specific, I am In a long term relationship that has become emotionally and psychologically abusive, and I I need to get out of this situation and heal.

Scott Benner 3:12
Okay, let's see what we can figure out. So we're going to keep you just so people know your your voice is going to be changed, like when you listen back to this, you won't recognize it too. So if anybody is listening right now and they think, Oh, I know who this is, you don't you just know what your voice sounds like when it's changed to sound like something else. Let's figure out a little bit about yourself so you're married, yeah, okay, for a long time, like more than a decade, more than two decades,

Anonymous Female Speaker 3:41
more than two decades we've been together more than three decades, like 35 years.

Scott Benner 3:47
Wow. Okay, and you have one child with diabetes? Do you have other children? You don't have to tell me how many, but do you have other children as well? No, no one child. Okay, give me a little like, like flavor. I guess, of these 30 years, you're having problems now, did they start immediately, or are they more recent? How would you describe your relationship up until now?

Anonymous Female Speaker 4:11
I would say that the situation has escalated in the last three to four years, and we can get into what's happened since that has led to this. But as I'm going through the process of reflecting back and wondering to myself, why didn't I see these things, I can recall what should have been red flags, but at the time, I was young and naive.

Scott Benner 4:44
What do you think some of them are like? Looking back, I would

Anonymous Female Speaker 4:48
categorize them as little points of exerting control. Particular incident that comes to mind when we first started dating, we were. Were at the supermarket, grocery shopping. We we didn't live together. At that time. I was an independent person. We met in college. I was independent. He was independent. We happened to go grocery shopping together. So I was gonna buy my own groceries, and he would buy his own groceries. That was the way I'd always done it, the way I assumed. But for some reason, he insisted on buying my groceries, I guess too, at the time it, it seemed like an act of kindness, but I remember he started taking the groceries out of my basket and putting it into his and I took them back. And I kind of laughed about it, like it was a light moment. And I just remember him taking them back. Then I take them back. I thought it was kind of funny, but then he said, God, you're annoying. And for some reason, that particular moment has stuck with me all these years. And I know that there were issues from the beginning, but I was just too I love to see. How did

Scott Benner 6:18
that strike you then like the god, you're annoying. Did you think it was playful, like, I'm trying to help you and you won't let me help you? Or did you see it as more like attacking of yourself at that point? And if so, then I guess, start there. Like, how did you see it in the moment? Do you recall it

Unknown Speaker 6:40
was more the latter. The tone of voice, the facial expression, which stick in my mind, were not playful.

Scott Benner 6:50
Did you see him treat other people that way? No,

Anonymous Female Speaker 6:52
you know, as we got closer to the present, that's one of the things I came to understand, is that behind closed doors was a different person than when we're out and about or when

Scott Benner 7:07
other people are around. How was he in front of his family?

Anonymous Female Speaker 7:13
Oh, caring, yeah, caring, protective, everything you would hope for and boyfriend, eventually, husband, definitely and

Scott Benner 7:25
towards his parents and his siblings, if he had any same No, oh, how

Anonymous Female Speaker 7:31
does he treat them? Yeah, I would say that there are times when he sort of lashes out at them or criticizes some of them, not all of them. Oh, ones whose life choices he disapproves of.

Scott Benner 7:49
Okay, so he's judgmental about the people he disagrees with in his family. Very gotcha, and that has been very consistent the entire time,

Anonymous Female Speaker 7:59
yes, from when we were dating till now. Yeah,

Scott Benner 8:03
and had that bothered you when you were younger? Or did you not kind of rub up against it back then,

Anonymous Female Speaker 8:10
I took his word for it, because I didn't know them. I hadn't met them or been around them much. I mean, when I finally met them, it was just sort of limited in big family gatherings. So it's not like I had time to have intimate conversations and really get to know them and and at the time we we lived kind of far away, so family gathering gatherings were few and far between, so I really didn't get to know them on my own. I depended on what he was telling me, and I trusted his judgment at that time. Okay,

Scott Benner 8:51
did you find yourself like, getting on his team, like, if he was harsh on people? Did you find yourself being like, yeah, they do suck. Or, how did you handle that if you didn't like get on board?

Anonymous Female Speaker 9:03
I'm embarrassed to say that. Yes, I went along with what he was saying, Not ever when we were around those people, but when we were in our apartment or wherever. And he made some kind of comment, I feel like, oh, gosh, that's that's not right, that's not good.

Scott Benner 9:27
So it starts off like that. That's kind of the entry. And how long are you together before you get married? A while, a while, like five years, more, less, more, more than five years. Okay? And what's the impetus behind that? I guess, like, did you want to get married? And he didn't. Vice versa. Did nobody ever bring it up, I

Anonymous Female Speaker 9:49
wanted to get married. He never said, No, I don't want to get married. But it was, I don't even remember the exact excuses, but. I was just like being strung along. I mean, I made very clear that I wanted to get married, but I don't know I stayed. I thought I was in love with a great person. I assume that the hiccups and ups and downs were natural part of any relationship. And the thing to do when you love someone is you love all of them, The Rose and the thorns and All

Scott Benner 10:32
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Anonymous Female Speaker 12:24
No, no. And I would say to parents out there who are thinking that that's a protective mechanism to not let your kids date when they're under your roof, it's not wise give them an opportunity to learn about themselves in a relationship, so that they can recognize when someone else is valuing them for who they are and not just what they bring to the table

Scott Benner 12:54
when he stretches out the courtship process while you've said, like, I'd like to get married, and you're getting older, and I mean If you met in college, and you mean you were, were you in your 20s, so when you got married, or were you into your 30s and to my 30s? Okay, so he strung this out for a long time. And is there a moment during that where you think, Oh, God, I did the wrong thing, but like, now I'm like, pot committed this is it like? What am I going to do?

Anonymous Female Speaker 13:22
I did feel stuck. I felt like I didn't know how to start over. And at that time, we were living somewhere where I had no family, so I didn't know where to go. It comes back to having no experience on my own, and even though I had a pretty important job and I felt confident at work, maybe importance the wrong word, but I had a job with a lot of responsibility, and I felt confident, and I knew my bosses believed in me and I was being promoted somehow at home, my mindset was just frozen and different, like

Scott Benner 14:10
you were a teenager. Still, yes, yeah. Do you think in that period of time he was aware of the the control aspects that he had like, do you think he was not marrying you on purpose to keep you in flux? Do you think did he move you away from family, or did that just happen?

Anonymous Female Speaker 14:29
He didn't say, you know, we're going to move now. It's never that explicit. It's it's more subtle, and that's one of the things that's one of the reasons I'm doing this interview, is it's not so easily recognizable as more over types of control, where it's like, you're gonna do this or else, it's more subtle, like, oh yeah. Want to pursue my career over here, and you can come along, you know that kind of thing,

Scott Benner 15:07
yeah. Can I ask, like, I'm gonna play devil's advocate here for a minute, like, do you think that if you were in a different part of your life or a different person, that you would have resisted it because you've had a long time to think about this, right? Like, you've been thinking about this forever? Am I right? Like, the last five Yeah, for a long time. Yeah, right. So like you've been going over this in your mind and trying to figure out where you went wrong, and yeah, it has there been a point in time where you've ever thought to yourself, like, I have to take responsibility here, like I could have done something and I didn't. Or do you see, I'm not saying that you should have I'm asking you, like, what your assessment of it is, Do

Anonymous Female Speaker 15:44
I have any blame or culpability? Of course, you know I, I was an adult, but I was a very inexperienced adult in matters of the heart, and I didn't feel like I could speak to anybody about this or learn about what I was going through. Nowadays, there's so much information out there, and that is, that's how I got to this point. Is social media, somehow those algorithms are so smart. Started putting little things in my feed about these kinds of relationships, and I watch one, and then all of a sudden, 50% my feed is like this. So I start watching more, learning more, and like this haze or cloud, just like lifts, because I finally have the vocabulary and the understanding to step out of the situation emotion, step out emotionally and look at it objectively, and see What has been happening when you're in deep, emotionally deep, I don't know, like, it's like the other part of your brain, the thinking part, the logic part, gets impaired. Yeah.

Scott Benner 17:09
Have you heard people say my algorithm figured out I was gay before I knew? Yeah, yeah, that kind of stuff, right? Yeah, yeah. So your algorithm figured out that you weren't happy or that you were being controlled by a partner or something like that, and started feeding you more stuff. You started seeing people speak openly the way you're speaking about it now, and you you're like, oh god, that's me. Like, I recognize myself in these people's stories. Absolutely, yeah. Were you ever afraid that that wasn't you, but it offered an explanation, so you would just go with it. How do you fact check that to make sure you're you know, I'm saying, Does that make sense?

Anonymous Female Speaker 17:53
It just makes sense. This the information I was seeing on social media. Part of it, yes, part of it was individuals like me speaking about their personal experiences, but the greater majority of it was PhD psychologists who have clients in this kind of situation, who have a lot of experience, who've written books about it, who've researched it. They have YouTube channels and books and practices where they specialize. This is the niche. And when those people are talking about certain things and defining certain things, describing experiences, and it's all clicking in my head, like, wow, yeah, this person could I have no idea who this is. They have no idea who I am, but they could be describing my life right now,

Scott Benner 18:45
right? Do you think your husband? Does he know this stuff about himself? Like, no, consciously, he's not aware of it. Like, if you turn to him today and said, Hey, I'm leaving. Here's the reasons why he'd be blindsided by that. Yes, and so have you brought this up to him in the past, and he's ignored it, or have you never said anything?

Anonymous Female Speaker 19:07
We have had discussions, arguments, whatever you want to call it, about other things, like more specific thing, whereas, like this, I call, like a higher level meta kind of thing. And it's clear to me, and by the way, our our t1 also has similar experiences,

Scott Benner 19:31
experiences that they've brought to you, or experiences that you've witnessed, and you've said, Oh, that happens to me with their father too.

Anonymous Female Speaker 19:38
Both, both, so we've all been in the house when something happens between them, and I'm hearing it with my own ears, or the kid is out with my husband, and the kid calls me like this, and this is happening, and I don't know. How to Deal with it. And this is really frustrating. He never listens. They used to say that all the time. He never listens. And that is also my experience from in your previous question, Have I talked about this before with him? I've tried having adult, mature, calm discussions. I don't think there's a lot of capacity to receive criticism and to self reflect. Why do you think? Why do I think? Yeah,

Scott Benner 20:30
I mean, you've, you've had to have diagnosed them and and dissected him over the years, like, Why do you think he can't?

Anonymous Female Speaker 20:37
I actually think he might be on the spectrum, and how they say that, I think that's part of the reason I have kind of stuck around, because I would make excuses for just the general behavior, the general lack of I think it's a lack of empathy and understanding, ability to self reflect. I'm obviously, I'm nowhere, anywhere, trained in anything like that.

Scott Benner 21:08
Well, we have that in common, because I am completely untrained in this. I want to make this is probably a good time to point this out. I have no certificate, I have no training, I have no education. I had this idea the other day, somebody was talking to me and said, you know, you could be a life coach. And I laughed about it, because, I mean, and no offense to life coaches, but it doesn't seem like a real thing to me. I know it is, like, don't get me wrong, like, I understand that there are people who need help, like, you know, formulating direction, and I understand that, like, I'm not, I'm not teasing anybody. It just seems like one of those things, like, I'm a little older, you know what I mean? It feels a little, a little hocus pocus E, but I thought they'd be fun conversations if people wanted to come on and, you know, people who were connected with diabetes and talk about other ideas. And I could whip out some of my, you know, 1970s ideas that I think are sometimes valuable. And you reached out. A number of people actually reached out. It's awesome, but, yeah, I just want to point out I have no training. I should not be doing this. This is not, uh, this is not legally binding. Can I take a right turn for just one second before we get back to it? Yeah, what has happened between you and I through this, this medium, that this actually seemed like a good idea to you. Well, I

Anonymous Female Speaker 22:23
think that a coach, whatever training they have, they have, but it comes down to being a good listener, a thoughtful person who has seen a lot of life and who can communicate to the person they're coaching ideas in a very digestible manner. And the Juicebox Podcast is, is that to perfection?

Scott Benner 22:52
Thank you. I'm gonna say I'm a life coach. I'm gonna have a T shirt made. Never mind you've talked me into it. You're sweet. I really appreciate you saying that I wanted to understand like so that happened to you or for you from me, through diabetes conversations,

Anonymous Female Speaker 23:10
absolutely, you know, a diagnosis. I didn't know where to turn for information at the very start, we were in the ICU, but I knew that I loved listening to podcasts, that I was the longtime podcast listener, and I knew there was a podcast about every subject on Earth. So I just opened my app and there's like, there's got to be a diabetes podcast. Found the Juicebox Podcast, and I probably tried listening to one or two before, but upon listening, it's it's just immediately apparent that you have a gift for talking with people and using their stories to educate this is gonna come off like crazy when I say this, but please, I'm a person of faith, and it's the same technique that Jesus used with parables. Certain things are just more digestible and more memorable when you hear them through the art of storytelling, whether your storytelling in a format like This American Life podcast where you storytelling in a Q A interview format, by knowing how to bring out what questions to ask to bring out the person's story. And I knew that I could listen to the Juicebox Podcast over and over and not get tired of it and learn learn so much from it that was immediately apparent because I listened to other podcasts when they're very pedantic, just like instructional, it's so boring and nothing sticks.

Scott Benner 24:53
Yeah, I agree with that part. I can't I mean, I don't understand when people put content out like that. It's just like. Uh, check boxes. Go forward. No personality. I mean, listen, you said a lot of words there. What I just heard, basically, was Jesus like, so I'm gonna go with that. Um, I'm gonna change my life. Coach, first of all that you're, you're lovely. I appreciate that and, and I am kidding for anybody who would imagine that I'm not, I think you're right. I think that I don't know why it occurs to me this way, right? I have no idea. I don't I don't know how I became who I am, or why I respond the way I do, or think the things I think or say the things I say. But to listen to you thoughtfully break it apart. It's so funny, because earlier you said my social media fed me, you know, psychologist talking about my situation, and I thought, Oh, they're describing me. And when you described what makes good storytelling, I thought, oh, that person is describing me, but I never would describe myself that way. It's interesting, isn't it? Like, if you asked me, like, you've, you've listened for a while, so, you know, like, if you ask me what the podcast is, I'm the least articulate about what it is, because I don't, I'm just doing the thing that occurs to me to do. But then when you described it, I was like, Oh, I do that, but not on purpose. Maybe that's why it works. I don't know. Anyway, that's that is really nice of you. I didn't I didn't expect all that, but I'm definitely going to take it and say thank you. I asked you if you thought he was cognizant of who he was, because you do not want to be in a situation where you spring this on him, because it's going to turn into anger, because you're going to be this person with very reasonable, measured, time, honored, you know, experiences, and you're going to say, I don't want to do this anymore. I'm going to stop doing this now, and what you're going to get back is anger. Then the way you're being treated unfairly is just going to shift, like you're going to trade the controlling part for the anger part. I don't want that for you, but I don't know if there's a way to avoid that or not. And it sounds like you've tried to explain a number of times what your problems are, and he doesn't seem receptive. Doesn't matter, by the way, if he's on the spectrum or not, like, whatever it is, he's he's unreceptive to your Hey, listen, this is happening. Explanations. I don't want this to happen. We can't do this. You can't treat the kid this way, you know, etc. You're in a bad spot, like, for sure. Can I ask you, do you have love left?

Anonymous Female Speaker 27:38
Love, not the way you're probably thinking of it. When you ask that question, I try to, and this is one of my problems, is I try to find the good in people. I even, even in this situation, for example, he, he's always been a good provider. We don't live in any or fiance or anything, but I always have had a roof over my head. Food on the table. Kids always been taken care of, so have no complaints.

Scott Benner 28:12
Are you going to be okay trading one sadness for a different one? I think you can expect that by giving away your problem, you're going to be happy, but I think that what I see most people do is they give away their problem and they trade it for a different problem. And I'm not saying you should stay because the next thing is not going to be fun either, but I do think it's worth being aware that in the interim, at least, this is not going to be fun like and it might be a number of years of not fun, you know, lawyers and arguments and splitting the kid and one person having control the diabetes on the kid one time, and the other one the next time. And, you know, the first time you see a blood sugar that's crazy, and you think, Oh, I can't call or text because the lawyer says I'm not allowed to, or whatever it's going to end up being. It's tough because this isn't fixable. You don't think this is fixable, right?

Anonymous Female Speaker 29:09
No, right. No, I don't, but I do want to make you aware of two other important things. So one is the kid is a legal adult, now off at college. Okay, so thank you Juicebox. Thank you loop community. Kid is doing great at college. Awesome. What led to at the beginning of this conversation, I had mentioned that things had escalated in the last few years, so the situation which has also kept me here is that few years ago, I was diagnosed with cancer.

Scott Benner 29:50
Oh, my God, I didn't know

Anonymous Female Speaker 29:52
okay, and the treatment kept me alive. Thank God. But. The side effects were somewhat debilitating. I am officially disabled, and for me, what that looks like is constant fatigue. I need I need helpers to help me with the activities of daily living. So showering, changing my clothes, I can feed myself, but like preparing meals, things like that, are a little harder. And I'm not only dependent financially, I'm very dependent, and that has kept me here, and

Scott Benner 30:34
he's helping you with those things, or he's paying for services

Anonymous Female Speaker 30:38
he's paying, and I am grateful for that. He's made clear that this is all too much, which I absolutely acknowledge being having your spouse severely ill, and then going from an active person who used to take care of the household, the groceries, the laundry, driving the kid around, if someone who went from that to being bedridden for quite some time. I can walk now, but not far I don't drive. So I need people to help me. He's made very clear that that's not his role, actually helping me with day to day things I'm not not for him. So

Scott Benner 31:32
you're not having a lot of contact. Then none. Sorry. When did you stop having sex? How long ago? I

Anonymous Female Speaker 31:40
can't remember a decade. Probably

Scott Benner 31:45
Gotcha. So you're not even like good roommates, like you're not even he's not even like, Hey, let me get that dish for your roommates so you sleep in the same room. Still, no, no, functionally. Did that happen when you got sick and you came back? Or had it happened before that, even before before that. Do you think he cheats? I don't know if you call it cheating in this situation, but do you think he's got like a relationship outside of your marriage,

Anonymous Female Speaker 32:10
not that I'm aware of, and you know, I would say it's not likely i He, to me, is like a rule follower who wants very much to be perceived as the good guy. No people can always surprise you. So if that's what's happening, that's what's happening. I don't have any evidence, and I don't I don't think it's in nature, but I would never say never to anybody if

Scott Benner 32:42
that happened, would you care? I'm so interested if you'd be hurt by it, or if you if it would just seem like it's Tuesday and the newspaper game. I

Anonymous Female Speaker 32:53
don't miss intimacy with Him, actually. Let's not call it intimacy. Let's just call it sex. Don't miss it. It was okay. I'm trying to be kind here. Would

Scott Benner 33:06
you be hurt by it, though, like but would it feel like a betrayal or No, no,

Anonymous Female Speaker 33:11
you know what feels like the greater betrayal is, is to get sick and then feel abandoned.

Scott Benner 33:19
So you guys had split your lives up pretty much before this, but then your illness comes, and it turns things more stark, like things are getting said out loud now that we were just agreeing were happening prior to that. Yes, things

Anonymous Female Speaker 33:34
are definitely getting said out loud there. Let's see, do I describe this without details. Certain things are such the details are so particular, they would be identifying. I like my bedroom a certain way. It's, it's, it's very within normal people. Nothing crazy. It's just a bedroom. The accusation was that this thing that I'm doing to my room is harming the property. Okay, you just have to trust me when I say it's like, totally normal. Okay, everybody does it. I am actually friends with the people who used to live here, so I call them up like, I haven't talked in a while, like, this crazy question for you, I'm in the bedroom that they were in. Did you guys ever do this in in the room? Like, do this to the room, and they're like, Yeah, of course, everybody does that. And I said, Well, did it ever hurt anything in the house to do like, what if they thought it was crazy? Because it is totally crazy. So that night, there was just this big I'll call it an argument. But. It was really one sided, because at that point I stopped being reactive. I realized that when I tried to reason, it just escalated. So I learned that not reacting would at least de escalate, but the things that were being said to me were like, You need to leave. You're damaging the house. I make the rules in this house. This is him saying that kind of stuff. You're

Scott Benner 35:31
making reasonable requests about stuff, and you're being told that it's not your decision. You can't do it, and moreover, it's not okay, because you're ruining the resale value of the home. Yeah, which doesn't appear to be true, as far as you can tell.

Anonymous Female Speaker 35:47
No, yeah. And then other other things are okay. So I mentioned that I'm kind of limited in mobility, so I really don't go anywhere. I can't unless somebody takes me and he doesn't take me anywhere. So I rely on my helpers, my paid helpers, and friends. So I'm pretty isolated, and I know that's not healthy, so I I actively accept when people text me and they're like, Hey, can we come over to see you, please? I'm not talking about having a party and play like one friend. Come over we chat for half an hour, something like that. There have been complaints that this has become like a hotel, like people, complaints about people coming in and out of that house and Google and there's no privacy, and like the day after Thanksgiving, two of my friends dropped off food, like home cooked food, which is nice, because mostly I eat processed food, because I Order from, I ordered whatever frozen food from grocery store gets delivered, and because that's what I can handle, right? I can't I can't cook anymore. So my friends, two friends, separately, they stop by and drop off the food. So they didn't stay if they've got stuff going on with their family. It's the holidays. One was here. I went back and looked at the ring camera. One was here for three minutes because she had brought a bunch of stuff, and she helped me unpack, put in the fridge. The other one was here for, I think it was like 30 seconds. She came in, gave me a hug, handed me a little bag of food, said, Happy Thanksgiving had left. I

Scott Benner 37:40
got a role, yeah. How did he characterize those visits? Where are

Anonymous Female Speaker 37:44
all these people coming over? I can't get any peace and quiet that

Scott Benner 37:51
kind of stuff. Does your friend group know that he's like this, like, Is it obvious at this point, or is he doing a good job of hiding it? He was

Anonymous Female Speaker 38:00
doing a good job of hiding, and so was I, and I recently, so I recently told all my very close, trusted friends, because I did see on one of my social media educational videos that after the first step of acknowledging that you are in this kind of situation, the Next step is to stop hiding and let people know. So I started telling my dear, dear friends and everybody shocked, because I kept up such the pre temps that, yeah, they were, I gotcha, and that's why I want people to hear this, because as a society, we speak a lot about sexual abuse. Did he, whatever? Send the news a lot. There's a physical abuse you can prove, let's say you've got bruises or whatever, emotional, psychological abuse you can't see it, and when the abuser acts so differently in public, you really believe. You come to believe no one would ever believe you if you told them the things that were said and done behind closed doors. So you keep silent to that, and that's what I did. What's

Scott Benner 39:19
your plan moving forward?

Anonymous Female Speaker 39:23
Well, the kids gone. Kid is aware, actually, as I said, they experienced a different kind of, different

Scott Benner 39:33
form of it, yes, yeah. And

Anonymous Female Speaker 39:35
they're like, I'm so happy for your mom that you have finally opened your eyes. I have always wanted you to be treated better, and I think you need to go live your life without all of this, because coming back to my health diagnosis, the stress could literally kill me. I. Good. You probably heard of that, but the Body Keeps the Score. Yeah, yeah. I'll never be able to prove it, but I think the stress of all those years probably, I think there's a good chance it led to my initial diagnosis, and then people had been telling me, but I finally accepted and understood that if I stay in this situation, this toxic situation, my recovery is going to be an uphill battle, because I'm not only battling the physical health situation, the mental stress, it

Scott Benner 40:34
doesn't stop. I was going to say like, you know, I said earlier, you're going to trade one sad thing for another sad thing. But then you you kind of opened up a little more and and told me more of the story. And I don't think I feel that way at this point, like you are alone, but with a force in your home that's making you uncomfortable constantly in a number of different ways. Obviously, it would be much better to be alone without that force. Your child being older, right? Like, and not being like, you're not gonna be passing the child back and forth. There's no like, kind of custody issues there. That's not gonna be a an impactor for you. Are you able to like, what is your goal? Is your goal for him to leave the place you live? Or is it for you to leave that place? Have you thought of how you want that to go. Because

Anonymous Female Speaker 41:22
of my limited mobility, it would be easier if he were to move on, but that doesn't seem to be what

Scott Benner 41:33
will happen. You think he'll defend he'll want the place for himself

Anonymous Female Speaker 41:39
or control of it? Yeah, well,

Scott Benner 41:42
I don't think it's gonna, I mean, I don't think it'll end up working out that way. I think you might be forced, you might be forced to sell it, to split proceeds, if that's a situation, if you own some of it, or all of it, do you have a place to go? Have you worked all this like, how far are you? I'm trying to remember if this is something you brought up to me before we began recording or not, but your plan is to leave, right? So, like, Yeah, is this a short term plan? Like, do you think this is going to happen within three months? It

Anonymous Female Speaker 42:11
depends. It's not easy for me to go apartment hunting.

Scott Benner 42:16
Yeah, no, I hear that. However,

Anonymous Female Speaker 42:20
gosh, I just love my friends. They're like, we'll do it for you. We will, on the weekends, go look at things, and then we'll narrow it down and then dance like two things, two places. And then you can look at those two and

Scott Benner 42:36
figure which one you like, choice. Yeah. Do you have any physical concerns? Do you think he'll like when you tell him? Do you think he'll become violent or extra angry, or anything like that?

Anonymous Female Speaker 42:45
I don't think so. There's never been physical violence or a threat of physical violence. Now, that's too specific. I'll tell you after, but something happened. And I have another friend who's a social worker, I told her, and she's like, that gets very close to and maybe even crosses over to a form of physical abuse you could I don't even know how it works, like you file some sort of complaint with whatever court handles such things, and is

Scott Benner 43:26
that a thing you want to do? Or do you just, what's your pie in the sky? Vibe here, like, what is it you're hoping happens? You're gonna let him know? Hey, listen, I think we both know, you know, we're not really married, so I, you know, it's time to split up. I'd love it if you'd leave if you don't want to, you know, if that's not something you're open to, you know, we're gonna have to make some, some plans to get me a place to live. Obviously, I'm gonna need you to keep covering my medical like, that kind of stuff. Like, I mean, you're like, look, I've got a lawyer. Like, you should get a lawyer. Like, how do you imagine that opening conversation to be

Anonymous Female Speaker 44:05
that sounds about right? I, I have had a free consultation on, you know, a friend of a friend of a friend is handles these kinds of things, and she offered to do phone consultation to help me understand the laws where I am, because my number, I have two major concerns. One is health insurance, because, yeah, the UN the United States system is so screwed up. You

Scott Benner 44:41
definitely can't lose what you have, that's for certain.

Anonymous Female Speaker 44:45
And the second would be housing, because I don't know, it's very expensive, yeah, so

Scott Benner 44:55
do you have that? I mean, does the household have that kind of money? Like you said you had a. A job before, but have you worked since you've been sick? No,

Anonymous Female Speaker 45:04
but I'm on disability. Okay, like, I qualify for disability, but it's not anywhere near enough to cover rent where I live and my helpers, yeah.

Scott Benner 45:19
Is that covered by insurance or the people that help, or is that a is that a cash prospect? You pay people out of pocket for that? That's

Anonymous Female Speaker 45:27
totally out of pocket? My limited understanding is that long term care insurance could have paid for it. But I think very few Americans have that. They have that,

Scott Benner 45:38
do you have any fear that you're going to be an out of sight, out of mind for him, like he's paying for people to help you, because he doesn't want to be involved. But if he's not there, then, like, is that a concern?

Anonymous Female Speaker 45:49
Do you mean if we were to be formally divorced, yeah,

Scott Benner 45:54
Mike, I mean, obviously that would get taken care of in some sort of a an agreement, but like, prior to the agreement like that, that gray area my parents were divorced, there's a gray area in between where there's nobody's being compelled to do anything. And you know that can sometimes take time. So my thought is, is that right now, he's probably happily paying for people to help you because he doesn't want to be involved with you to begin with. But if you are off in an apartment, and there's no court order in in place that says that, you know he needs to keep paying for your care. I'm gonna guess that's gonna be difficult money to shake out of him. You see what I'm saying? Yeah, cuz you're gonna be out of sight, out of mind. Then, like, if you're in the house and you need something, if he doesn't pay for somebody to get it for you, he's gonna end up having to do it, so he's probably happy to spend the money to avoid the contact, but the contact gets avoided when you leave. That's my concern for you, is that in the middle time, like, how are you gonna get the services you need so that you can actually make the separation leave and get the process underway? So there's an actual court order in place that that handles this like that in between time. I'm concerned for for you.

Anonymous Female Speaker 47:08
Yes, thank you for bringing that up. That's something that I hadn't thought of yet.

Scott Benner 47:13
Make sure you understand what that's going to be, because you could very well end up, I mean, you guys are so separated to begin with, that you might be one of those people who gets divorced while you're in the same house, and that you never leave during the divorce process. That happens and then eventually someone moves out. I can't see that. It's not going to end up being him. You know what I mean? Like, it seems unreasonable for someone to try to compel you to leave it does

Anonymous Female Speaker 47:43
seem unreasonable. I'll tell you why after I

Scott Benner 47:49
bet you a lot of your life seems unreasonable. Jesus. I mean, do you see what I'm saying? Like, if you've got a mediator, or if you get lawyers talking right away, like I don't know that if I was you, that I would leave right away. I

Anonymous Female Speaker 48:06
don't plan on it. Yeah, for two reasons. One, one is this just hard for me, right? And I have thought that okay. Once, once I leave, I have no way back.

Scott Benner 48:21
You lose a lot of power by leaving the house. I think, yeah, yes.

Anonymous Female Speaker 48:24
I mean, as a resident here, I just think there have got to be laws. We've been here for 1617, years. Yeah,

Scott Benner 48:36
it's your house too. I wouldn't go anywhere. That was my point. That's what I was getting to I wouldn't just move out. I'd stay unless you were you felt like you were in danger, and if you feel like you're in danger, then I'd get him removed. But I wouldn't secede that house if I was you. Okay, you know what I'm saying? Because, like, you said, like, once you're out, you're out. I mean, that's your house as much as it is his. You have a medical reason that leaving is difficult. And I can't see a world where a court or a judge or a mediator says, Hey, one of his got to go, and it's you. It just doesn't. It doesn't make sense. And I'm going to guess that once you put the proceedings into motion. He's not going to be comfortable there. You might be surprised that he might. He might happily move to another place at some point.

Anonymous Female Speaker 49:30
It's possible. I wish he would. He actually, he knows people where he could stay there easily. You

Scott Benner 49:41
know what I mean? It's going to become uncomfortable. Also, like, right now, you get to keep pretending that you're like, you're more that your relationship is morphing like even though you're not sleeping in the same room, or he doesn't seem interested in helping you with your health concerns. But he's still getting to pretend that, you know, for. The outside. People don't know for the most part, oh

Anonymous Female Speaker 50:03
Exactly yeah. How is it gonna look if he says, Oh yeah, my wife has cancer. I'm divorcing her. The optics of that,

Scott Benner 50:14
I do think at some point the optics will get the better of him, and probably deservingly. So by the way, I don't want to sound bitter, but like, I mean, I'm not hearing his side of the story. But like, you know, if your side of the story is anywhere near accurate, then I would think he'd get embarrassed and leave honestly. So you've had a consultation, a phone consultation, your child's over 18, away at school, you're looking at, were you trying to get through the holidays? Were you trying to get through like, a thing with your health? Like, are you ready to go? Is it just a matter of, like, getting the nerve where you at?

Anonymous Female Speaker 50:49
I'm trying to gather the information that the attorney recommended that I have before taking a more formal step, okay,

Scott Benner 51:04
bank records, writing down, writing down, your your experiences, things like that.

Anonymous Female Speaker 51:10
I suspect that there are things I don't know of. I suspect there may be hidden assets.

Scott Benner 51:18
Oh, got money in the walls, maybe awesome.

Anonymous Female Speaker 51:25
I saw some mail that was clearly financial. That was nothing I had ever heard about before, interesting,

Scott Benner 51:40
so you're looking into that as well?

Anonymous Female Speaker 51:42
Well, yes, or at least my attorney, or when that person becomes my attorney, you haven't hired them yet formally said that their firm has ways to find anything that's hidden, if that is the case, is the case, and to have some screenshots of said mail to help. Jeez.

Scott Benner 52:14
It's ugly. It sucks, doesn't it like I mean, are you so far past it sucks that it doesn't bother you anymore, like you just said, I'm saying like, there doesn't sound like a lot of again, you're not longing for a thing to be the way it was, like that that's out of your mind. You don't have that expectation. You're old enough that I don't imagine you're thinking about like, you know, I get away from this person and restart another relationship or something like that. Like you're just trying to just get yourself some distance to see if your health will respond to to a better environment. Is that correct?

Anonymous Female Speaker 52:53
Yes, that is my number one priority. Who's the hottie? Now I don't even know my date was Brad Pitt. Well, he turned out to be kind of mature. A hot guy could walk through the door and it wouldn't matter to me.

Scott Benner 53:09
Yeah, that's not your situation. That's somebody. Do you think this is going to be a crazy question, perhaps, but do you think that if it wasn't for the cancer, you ever would have decided to leave

Anonymous Female Speaker 53:18
no and that is, you know, coming back to my faith. You know, I had heard people say things like, when, when bad things happen. Oh, this is a blessing. And I thought they were dulu, or whatever the kids say now, but I understand, I fully understand now I would have kept justifying and justifying and trying to understand and trying to be empathetic and sympathetic and be the one to bend and flex to keep things going. And I realize now none of that effort amounted to anything, because this is not someone who is open to change. And I, I joined a support group. I mean, it was originally for health, the kind of health issues I have, and I I got to know these people pretty well. And one day, I was just like, I know I've been telling you I'm struggling with this physical health thing, and that is true, but I need to, need to give you a little more color on why it's been so hard

Scott Benner 54:32
for me. Yeah. Talk about the rest of it. Yeah.

Anonymous Female Speaker 54:35
So I talked about the rest of it. And what did you know? Like half the group had similar experiences. And apparently I haven't fact checked this, but I it did come up on my feed, just like a meme. And actually, you've talked about it a little bit, something similar with regard to Team One dike. System. Anyway, something came up on VIP that said the divorce rate for marriages where there's a chronic illness is 75%

Scott Benner 55:12
it goes up to like two. It goes from like one in two to two in three. The last time I had heard about it, yeah,

Anonymous Female Speaker 55:21
significant, yeah, this is where one of the partners is the one who's chronically ill. And it says something like, if, like, if it's a heterosexual couple, that's the male is the one who is sick. That's like 3% of the divorce. Anyway, if it's a female, it's a much higher number.

Scott Benner 55:44
You saying boys bail quicker than girls, by a significant margin.

Anonymous Female Speaker 55:49
I'm saying this is a meme that came up for, I don't know. It's not, not a meme, but a post that came up in my social media feed. I have not had the time to fact check it. Well, some I read

Scott Benner 56:03
the comments. Doesn't sound unreasonable. Is that what you're

Anonymous Female Speaker 56:06
saying? I've read the comments, and just anecdotally, so many people commented that, yeah, exactly, totally believe it. That was my life. That was my situation. So, I mean, I'm not here to bad mouth men. There are amazing men. I just not with one of them.

Scott Benner 56:25
Just didn't get one. It's funny too, right? Like you, you coupled up so early in college, and you were, it sounds like you were head over heels. So, like, you overlooked a lot of different things. You didn't even know what you were overlooking, probably at the time. I don't think any of us do. But then, you know, like, some people get lucky, right? Because I don't think anyone's perfect. Like, there's a world where a different you and a different him get together and, you know, you Zig when you should have zagged, or something changes a little bit, or something does happen or doesn't happen, and you grow in it, and it's a different situation. But this is just how this one went. So, I mean, for whatever reason, eventually pushed you to do something, you're gonna have a net positive for making this decision. I don't want to tell you that. I think it's going to be 100% better. Like, it could be crazy. You could wake up three years from now and be like, Oh God, I wish I was still married like I have no idea you know what I mean, but I don't know what to tell you is going to happen. I just know that if you believe right now that you're being treated that poorly, if you're being isolated already, if this is the life you're leading, but there's stress is in your house, and you're worried that this stress is compounding your health issues, then I think the only reasonable thing to do is the thing you're doing. It makes sense to Yeah, it makes sense

Anonymous Female Speaker 57:46
to me. That makes sense. Yeah. I'm really thankful for this opportunity to talk things out with you. Oh,

Scott Benner 57:55
my God, did this help by any chance? Yeah? Yeah. I have no idea what I'm doing. I'm just like, this might be a good idea for the podcast. Do you have, like, the the feeling like you want to ask a question of me before we go, or do you just feel like the conversation was valuable?

Anonymous Female Speaker 58:11
I think the conversation was definitely valuable, and especially since, like, that point you made about the in between period being prepared for that, because, unfortunately, I do not live close to any family. I have a lot of what we call, call it family by choice. I guess people friends became friends over the long period, and I trust them very much. One has even offered like a spare bedroom. But I think I need to mentally prepare for staying here while things get worked out, because that would just overall be better for me and my health needs, and I have to put those first. Yeah, no,

Scott Benner 59:07
for sure. I mean, you obviously you couldn't share too much, because the details would let people know who you are. But I mean, you've had a significant health issue. It's ongoing, and to give yourself the best chance possible, I agree with you. I don't see how you could live around all the stress. So, yeah, I mean, listen, you're in a bad situation, you know, like, this is not like. This isn't like. If you just made one different decision, this would all be like, you know, rainbows and sunshine. This is a this is a mess, like your illness, your relationship. You know, the years that you guys have put into pretending this wasn't happening until it was like, You know what I mean, like, it's not going to be easily untangled. I don't know if you'll ever untangle it, but you could certainly put yourself in a better spot. I think yes,

Anonymous Female Speaker 59:53
and then I wanted to figure out how to heal and move on. So I don't know if it. If you want to how much time we have left, or if you want to go there, but I met him so young, like I didn't really give myself time in between leaving home for college and getting into a serious relationship to just be on my own, not attached to anyone or anything, and just learn who I am. And, hey, you want to do that? My kids said you can do that now. You know, once you're out of here, um, I in my 50s, I just don't even know where to start. And I think that thought is another reason people in situations similar to mine stay Yeah, like the thought of and forget about, like, even if you don't want to do dating, set that aside. I I've been a stay at home mom. I don't know if I can work, and even if I can, like, how do people go about getting jobs now? Like, so much has changed, so you

Scott Benner 1:01:08
feel like the world changed while you were doing this and and it's hard to imagine starting over again, even

Anonymous Female Speaker 1:01:16
just that I'm from the day of paper resumes. And now it's like, everything is online. You have to have certain keywords or whatever in your resume or their the algorithms, those algorithms don't pick you. Yeah. And then I take your point, blame my absence for the workforce, like, like, AI is taking over everything. Who's gonna hire me? Like, that's going through my mind

Scott Benner 1:01:48
a lot or and even if that person exists, like, how do you find them? Yeah, and how do they find you? Yeah, I hear you. That's the bummer. And I'm aware my son just found a job this year, and so I watched him go through that process that you must have to keyword your resume so that the algorithm likes it enough to show it to somebody. Yeah, it's interesting, and that's not a thing you know about anymore, not currently. You could learn.

Anonymous Female Speaker 1:02:16
I'm willing to learn. But where does a person? Where does this person go to learn these things? Like, I'm from the day and age where you take a class or whatever? I guess so much is on social media. Now. I mean, hey, I learned about narcissistic abuse over social media, so maybe there's a way for me to learn how to reinvent myself over social media.

Scott Benner 1:02:40
You learned how to take care of your kid. It's diabetes. With social media, you learned about your life situation. I'm sure you could figure this out as well. And you have a good, astonishingly, a good attitude about I mean, unless you're unless you have, like, a ton of seething rage inside of you that you just didn't tell me about you seem like you're in a at least mentally in a reasonable place to do this. I

Anonymous Female Speaker 1:03:07
spent a lot of time being angry over the years.

Scott Benner 1:03:12
Are you just done with it now?

Anonymous Female Speaker 1:03:14
Yes. I mean, I came to understand that it didn't help me at all. Yeah. You know, I'm just redirecting, like I don't want to waste any more energy or just head space on someone who doesn't deserve my time?

Scott Benner 1:03:32
Yeah, no, I hear you. I think that's an incredibly healthy decision to make. Really, you should give yourself a lot of credit because you are like you said, you're in your 50s. You've been at this for a long time. It would be easy just to, like, dip your head in the sand and go, like, I just got to make it. Like, 10 more years, you know, we'll all get real old, none of this will matter anymore. And blah, blah, blah, no, I think, take advantage of the time you have left, no matter what that time is, or the you know, how much you can get around or not, get around like you're still living your life every day. You might as well live it, at least in the way that you see fit, and in a way where people are not, you know, asserting their on you and making you feel a certain way or feeling burdened by you. Because, I mean, maybe the most insulting thing of the conversation, I mean, of your explanation of your life. I feel like the most insulting thing is just being told, like, well, you're sick now and you need help, and I don't want to be involved in that. That's, yeah, I think that's terrible actually, but I don't think it's uncommon, but I do think it's terrible.

Anonymous Female Speaker 1:04:36
Yeah, I completely agree that that's the thing that psychologically kept me confused for the longest time, because I kept trying to figure out ways to make him care, and then it just I got educated, and I let go of that expectation, and. The freedom came with that. So coming back to what I the reason I put myself out here in this podcast now I know you have such a huge audience for anyone who's listening, who is in a similar situation and feels so stuck, I just want you to hear this and realize you are not stuck, man or woman, you are not stuck, and you can educate yourself, look up narcissistic abuse and use that education to empower yourself. It's one step at a time. We did not get here overnight, and extricating ourselves from the situation won't be quick either. Yeah, that's for sure. Or painless, it'll be quite painful. But think of it if, if I who am dealing with cancer and the side effects, the rare side effects of the treatment. Can make this shift in mindset and start taking baby steps, one step at a time, to get out. You can too. Don't stay I think

Scott Benner 1:06:14
it's a reasonable way to sum it up, right? It's not going to be easy and it's not going to be fun, and it's a decision. You don't have to let life keep happening to you. You could at least make a decision and try to move it into a different direction. I don't say that any of us could sit here and know for sure what's going to happen to you through this process, but you know what's happening to you now, and it's not something you're interested in, so change something and see what happens. Maybe it'll get better. I think it will, like you said, for time, feel like it got worse, but you're gonna have to go through the you know, like you said, it took a long time to get here. It's gonna take a long time to get out of it again. So it's all very good advice from you. It sounds like you've really had a lot of time to think about this, and it feels to me like you're, you're well thought out and probably ready to make the next step. It sounds to me like you're gonna, you're gonna be okay.

Anonymous Female Speaker 1:07:08
I do a lot of praying for that, and I do believe I'm going to be okay. I've got great friends, and I'm taking my power back. It's awesome. Whatever the young kids see

Scott Benner 1:07:23
you're still young. I know somebody who would tell you you're still young. They tell me all the time, and I tell them, No, I don't think we are I think we're old. But they keep saying we're young. So I choose to listen. You have plenty of, you know, plenty of good years to do something great with it, you just got to go figure it out. Do you think I the one thing I didn't ask you about your condition is, is there a prognosis where you're you're doing better than you're gonna than you are now? Or do they expect this to be your baseline?

Anonymous Female Speaker 1:07:55
It could very well be my baseline. If this had happened to me, a few years ago, I would probably not be here, but some new drugs have been developed in the recent years, who have been released or approved or whatever, and they've made a significant difference

Scott Benner 1:08:17
okay

Anonymous Female Speaker 1:08:18
to keep people like me alive, and maybe the next step is in the next 10 years, whatever 15 years is to then improve quality of life. So I'm hopeful, and I have to just stay positive and be hopeful. But if I'm where I am, my objective is to find a way to to be happy, to be of service to other people, to give back. Because I have, I mean, the amount of doctors and nurses and pas and MPs who have just helped me so much over the years. I want to find a way to give back, and that keeps me going too. Yeah,

Scott Benner 1:09:06
well, that's a great purpose that you won't need to keyword a resume to do. That's for sure. Maybe you'll be one of those people on social media that helps other people get out of their stuff by sharing their thing. Have you thought of that? You come full circle maybe one day. Who knows? Like you said, the world's different now, like it's it's incredibly digital. People are able to find ideas and voices that they never would have met in the past. You know, you do a good job of telling your story, and you go out there and tell people like, look, this is my situation. And you know, it's not any Imagine, imagine a couple years from now, like this isn't my situation any longer. You know about getting through problematic relationships, you know about getting through incredibly difficult health issues. There's a lot of people out there that could use that at uh. I don't even want to say advice. I would just more say an example. I think part of what the podcast is for people with diabetes is just like I had a daughter diagnosed very young. We had to figure everything out on our own. And now we're just, I'm just re sharing the things that I figured out. That's all like, I'm just talking about the things that I figured out. And, you know, that stops other people from having to struggle the way we struggled. I'm really just doing what you said you wanted to do. You could do it too. A lot of people do it. You know, a lot of people out there that need help. You never know. Well, you'll figure it out. That's for sure. Let me thank you for doing this. I really do appreciate this is obviously very difficult thing to talk about, like, just like this. I can't thank you enough for adding your voice to the podcast and for being the first person to reach out when I said, like, I think what I said was, like, Would you like to be coached by a completely, I forget how I put it, but untrained life coach, and you were like, yeah. So thank you. I really appreciate it.

Anonymous Female Speaker 1:10:58
Oh, you're welcome. I really hope this series becomes a huge success. I'll be shocked if it's not, because you're just a great person to talk to. Scott, it's very easy to talk to you. Thank you, lovely.

Scott Benner 1:11:11
You're very nice. I'm sure the people in my life are probably like, no, he's not. But you know, like for everybody else, awesome. Thank you. Hold on one second for me,

today's episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter. This is the meter that my daughter has on her person right now. It is incredibly accurate and waiting for you at contour next.com/juice box. I'd like to thank cozy Earth for sponsoring this episode of The Juicebox Podcast and remind you that using my offer code juice box at checkout will save you 40% off of your entire order at cozy earth.com that's the sheets, the towels, the clothing, anything available on the website. If you'd like to be on the life coach series, give me an email. Guess I usually say give me a call. You can't call me, but you can email me through Juicebox podcast.com Make life coach your subject line and let me know what you want to talk about. Hey, kids, listen up. You've made it to the end of the podcast. You must have enjoyed it. You know what else you might enjoy, the private Facebook group for the Juicebox Podcast. I know you're thinking, Oh, Facebook. Scott, please. But no. Beautiful group, wonderful people, a fantastic community Juicebox Podcast. Type one diabetes on Facebook. Of course, if you have type two, are you touched by diabetes in any way? You're absolutely welcome. It's a private group, so you'll have to answer a couple of questions before you come in, but make sure you're not a bot or an evildoer. Then you're on your way. You'll be part of the family. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox 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 podcast 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, ooh, I'll probably send you a Christmas card. Would you like a Christmas card? My last thanks to rob at wrong way. Recording. Rob is the editor for the Juicebox Podcast, and he changed this person's voice so magically, I swear, if you heard this person's real voice, you'd just be stunned. Did such a wonderful job of protecting her anonymity. I want to thank him so much. Check him out at wrong wayrecording.com, you.

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