#1058 Stiff Person

Janet has type 1 diabetes and a number of other auto immune issues.

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Scott Benner 0:00
Hello friends, and welcome to the Juicebox Podcast. This is episode 1058

Hey guys, let's get right into it Shannon's 54 years old she has type one diabetes diagnosis 37. Now, what else does she have going on? She developed cold verta Cordia at age four vitiligo at nine and stiff person syndrome after the birth of a child at around age 30. What a story. Settle in. And remember while you're listening, that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. Are you looking for the diabetes Pro Tip series that runs between Episode 1000? Didn't 1026 Would you like to save money? Oh, okay, well, then here's a couple of things you could do. use the offer code juice box at checkout at cozy earth.com. That'll save you 40% off your entire order. And if you use my link drink, ag one.com/juice box to get going with ag one, you'll get five free travel packs, and a year supply of vitamin D with your first purchase. Don't forget to check out the private Facebook group Juicebox Podcast type one diabetes all our welcome 43,000 members strong. This episode of The Juicebox Podcast, this episode of The Juicebox Podcast is sponsored by Dexcom. When you use my link dexcom.com/juice box, you can get yourself a G six or G seven they have them both there. Go check them out. Speaking of things that links that they have, how about an omni pod, get the same tubeless insulin pump that so many people love Omni pod dash or the Omni pod five Omni pod.com/juice box Get started today. With my link. There are links in the show notes of the audio player you're listening in right now. And links at juicebox podcast.com to Dexcom Omni pod and all of the sponsors, using those links when you make your purchase helps the show.

Janet 2:22
Hi everyone, my name is Janet. I am 54 years old, and I have type one diabetes, and I got it when I was 37 years old. So I'm one of the late in life people. I'm from Southern California. And that's a little about me

Scott Benner 2:38
3754 What do you know about the number 37? Do you listen to the podcast? Well, I listened to the podcast, but I don't know. You don't hear all the silly things.

Janet 2:46
I say? No, it's not about 37.

Scott Benner 2:50
Alright, homeless, I don't want to get it right when I say number 37. Okay. When asked to choose a random number 37 is the most frequently chosen number. Oh, wow. When you say Hey, pick a number between one and 100 people most frequently say 37

Unknown Speaker 3:13
Okay, that's crazy.

Scott Benner 3:16
That's it. I don't know why exactly. So anyway, you fun fact for me? Well, yeah, I mean, what I'm saying is, did you get diabetes when you're 37? Or did the matrix give it to you? That's what I'm getting?

Janet 3:31
Yes, I think that matrix gave it to me.

Scott Benner 3:35
I want to be very clear. I don't believe in all that. I don't believe we're living in a phony reality. So you've had diabetes for 17 years?

Unknown Speaker 3:43
Yep. About 17 years. Okay.

Scott Benner 3:46
Well, I mean, I was gonna say wasn't a surprise, but I bet it was a hell of a surprise. Right?

Janet 3:51
Yes, very much. So.

Scott Benner 3:54
Any type one in your extended family?

Janet 3:58
None. Other autoimmune. Yes. And I actually had to go back and look up autoimmune diseases. So I make sure that I don't say some that aren't but I have a crap ton of them on my mother's side, okay. Give them to me. So, okay, so start with me. So at age four, they is before they even had a name for it. I developed something called cold. urticaria. And if you've ever heard of that,

Scott Benner 4:27
you get cold you get little bumps all over you and they're itchy.

Janet 4:31
Yes, I eat a popsicle and I almost died. Because my throat closed.

Scott Benner 4:37
Are you going to tell me that you have a thyroid issue? No, I don't have a thyroid issue. Interesting. Go ahead. What

Janet 4:43
else? Okay, so that happened at age four. At age nine. I developed I always say this wrong middle vitiligo, vitiligo vitiligo, yes, yes. So, three spots came and still have the same three spots and notice they're ones that was interesting. And I don't think they knew a lot about it then because they used to give me these pills to take and they would say go outside and lay in the sun. They'll go away, which I just got really, really tan. And the white spots just look more white. So

Scott Benner 5:19
what years? I'm so sorry, that really is funny. What year was that? Well, I was nine. So long time ago, because you're all so.

Janet 5:29
So what would that be? Like? 77? Something like

Scott Benner 5:32
that. What we're gonna do? Wait, hold on. You were born in 68. And then if I had nine to that I come up to like, 77. Yeah. All right. Yeah. So you're telling me that a trained medical professional told you basically to go outside and fill in those circles with some sun?

Janet 5:52
Yes, pill, take a pill and the pill made me get more tan. I don't even know what it was, you know, I was nine. So I remember. My mom would give me the pill and then a half an hour later, I would go lay out in the sun for like a half an hour. Every day.

Scott Benner 6:06
You take that pill in Ibiza by any chance? What was that? Did you take that pill in Ibiza by any chance? No. With Southern California, I guess you know, do you know the song? Oh, I think I do. Here's why this pops up because the guy just told you that I interviewed prior to you. One of his reality shows happened in Ibiza. And you were like I took a pill. And then I was like, I took a pill in Ibiza. The guy was in a PISA number 37. It's all making sense. That's, that's funny. Meanwhile, do you see how people's brains work? None of those things are connected to each other.

Janet 6:46
Right? It's like the seven degrees or whatever it is.

Scott Benner 6:50
Alright, so when you're when you're doing your spots didn't fill in? I assume right? You gave off. But stopped. Yes. Stop doing that. Did something else happen? I feel like you're gonna tell me six to seven autoimmune issues.

Janet 7:02
Yeah, no. So then after that, the next thing that became something that I didn't know was something until much later was I have stiff person syndrome.

Scott Benner 7:15
Get out of here. Do you really?

Janet 7:16
I do.

Scott Benner 7:18
I know that that is seems wrong, that I was excited when you said that. I know if I feel bad that you have I know. But you're the first person to say this. So what age did you develop it? What age? Did you understand that you had it?

Janet 7:34
Okay, so I first started realizing that something was wrong with me after the birth of my child. So I have one son, who's now he just turned 24 this week. So 1999 He was born. And I noticed things like this constant pain. So like, lay on the floor play with your baby was like just pure hell for me. I would try to lay on the floor. You know, you lay on your back. And you you know, you put the baby up. And you're Oh, I don't know. So I could barely get up. So I don't know if you want me to go into that whole thing right now or just tell you

Scott Benner 8:10
Oh, don't don't overthink it, just keep going. Okay.

Janet 8:14
So, you know, I go to my doctor, my general practitioner at the time and I say, hey, you know, I've noticed this issue I have like, I'm in such pain, like it's crazy. So again, his advice was, well, don't lay on the floor and play with your baby then.

Scott Benner 8:25
And get those spots filled in with them. So yes,

Janet 8:28
exactly. Different doctor, obviously. But still,

Scott Benner 8:33
was it really but yeah, go ahead.

Janet 8:36
So then, you know, all this time thinking about I had my pregnancy was fine. No gestational diabetes, nothing. Everything went perfectly. I was about 30 At this time, going along, well gained, you know, like 20 pounds. Everything was was it was a perfect pregnancy. And then at the end, I go into premature labor. And it was crazy because I take my mom with me where to Lamaze class, right. Yeah. And so then they're like, Oh, we're going to show you how the belt that you wear you know, around your stomach. It shows you if you're in contractions or not, and blah, blah, blah, right? So anyone, anyone want to volunteer, so I'm like, oh, all volunteer. So I go up there and she puts the the belt on me and then she leans over to me and she says, Do you realize you're having contractions? And I said no. And then she's like, Yeah, you need to go see your doctor. So the next morning I go to see my doctor and you know they put you in that dark room and and and monitor you and sure enough, I'm having contractions like every 15 minutes I don't feel anything though. So you know, they send you home with your little medicine and you're on bed rest and then about three days later I got up to use the restroom and like I thought it was just pee that you know, oops, you know, peed a little bit when I went to the bathroom? Yeah. On the way the bathroom and oh no, you need to come in because we need to test that so they test it out. That's amniotic fluid. So if Nope, you know, now you're in the hospital. So I was in the hospital for like 10 days before, I finally just said, Oh my gosh, if he if he said to hurry to get here, let's let's let's let him come. So, you know Pitocin for 24 hours, I was so sick they put me on magnesium sulfate I was just able to I was just incredibly sick the entire time in the hospital and then, you know, the neonatal comes in, they measure him for like this kids like seven pounds already. And I'm about six weeks, you know, like so it was that like 34 weeks at that time. So then they're like, well, we'll just get her up and walk around. Anyways, I tried everything. And then finally, the day I had him which was March 13. So it was like 35 weeks early. Like I was at 35. So five weeks or like you know, they came in and they're like, you're like full on on contractions on the on our machines and in the nurse's station and hearing you're laughing and having a good time. I'm like, I don't feel a thing. So they did one of those like little internal monitor things. And when they did that, they like pop the sack and it like I was throwing I was terrible. I was full on then and contractions, but only dilated like three centimeters and he's trying to come out it was just a mess. So they gave me the spinal block at that point. So then as I'm throwing up, I'm gonna lay in, you know, the side of the bed throwing up everywhere in there trying to put this in there like stay still and I'm like, Oh my gosh. So

Scott Benner 11:38
I don't want any babies to say something like get

Janet 11:43
it out. So he was relatively healthy. He you know, jaundice and then you know, in a oxygen tent for like three hours but he was healthy. He was 615 and 19 inches long and he's turned out to be a healthy human being. He was tall, great. probably

Scott Benner 11:56
scared. I don't know at three centimeters dilated. Have you ever been trapped into your blanket? In your bed? You can't find the edge of it. You start to panic. Yeah. Well, you think that's gotta be the same thing. You're like, everything I've read says this is where I go but I can't find it.

Janet 12:14
And it's so funny because they were like he's trying to push on he's getting like this cone head already. And I'm only like three centimeters and then once they deliver him you know how they measure their head, right? He was like 13 and a half centimeters his head. Oh, dear God. That's not natural.

Scott Benner 12:29
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Janet 15:16
in the funniest thing that, Scott is that when I developed the leak in the sack, they said it's at the very, very top of your, like, over your area, right? I said, like you said, this little finger, they're going like, you know, you're scratching it going, yeah, let me out. But so that's what I said, if he's in such a hurry to come into the world and knowing his personality Now it's perfect. Well, yeah, so he got here. But I always suspected that, that something went wrong in that process, like the hit something when they were doing the spinal tap. And that was what the pain was from. And I'm one of these people that tries to like, rationalize everything. Yeah. So. So you're

Scott Benner 15:57
under strain. You live with pain and stiffness, then moving forward? Yes. Okay. But how did they actually diagnose?

Janet 16:06
They didn't Is it funny story. I mean, I was going through a medical history for you. And I was like, dang, man, I went, like, I tried for many years, I January will come and I'll be like, this is the year, this is the year I'm going to fix myself and move forward. And so we ended up, my son goes off to college, we sold our big house, we moved into our vacation home up in Lake Arrowhead. And we're like, Okay, this is it, we're going to retire, I'm not going to have any stress, things are going to be better in my life. Well, they weren't. So there was a mountain doctor up there. They have no specialists like on the hill, you gotta go down the mountain. But there was this nice, you know, general practitioner, super nice guy who actually listened to you. And so he agreed to take, he had no type ones. But he agreed, as long as I stayed in range that he would, you know, continue to order the blood test. And if I needed to see the Endo, I'd have to go down the hill. And so I was talking with him one day, and it telling him about my constant pain. And he said to me, like, you know, that's not normal, right? And I said, Well, I've just been living with it for, you know, 20 plus years. And they tell me, you know, you know, oh, you have fibromyalgia, then they say, No, you don't have fibromyalgia? Oh, you have this? No, you don't have that, you know, it's just back and forth. Can because I won't live on antidepressants and pain meds, they just get aggravated with me. So he said, You know what, I, you know, after I've gotten to know you, you seem like a very rational person. So I'm going to send you to a neuro muscular specialist that I know down in Riverside, so I'm like, okay, so I go down there. And she sees me and does the whole, you know, brain, MRI, thoracic, and whatever the cervical all those MRIs. And sure enough, everything comes back normal, which is no ms. No problems with my spinal cord, per se. So she then doesn't have the equipment and sends me over to another local neurologist who does a EMG on me. And so that's the test where they put all the little needles in your arms and legs and in test your nerves and your knowing your muscles, okay, so they basically like shock you a little bit. So sure enough, that comes back abnormal. And then this whole time, I'm Gad, 65 Positive. So that's a huge marker for SPS. And so then they come to the conclusion. Oh, wow, we've never seen this case. And no one had ever seen a case of SPs and their practice. So they both got together and said, Yeah, man, this girl has stiff person syndrome. So,

Scott Benner 18:48
so how long did you get that diagnosis?

Janet 18:50
That was the end of 2019.

Scott Benner 18:53
But you believe it's been around since the birth of your 24 year old? Yes. So then the hard question is, you know, the hard question, right. Right. Doesn't this limit life expectancy?

Janet 19:07
It does somewhat, I think every case is different. It's definitely a degenerative type disease. And so when I I have a neurologist now who's pretty decent, he's, he hasn't, I'm the only one in his practice, but he saw it in his residency. So he said, you know, my, my guess is because you live a life that's very clean, like I don't drink alcohol, for the most part. Never have done drugs. And I'm extremely conservative with prescription medication even and, and I just try to eat as healthy as possible. He says, I think you're are keeping some of these other issues at bay, basically, like some people and I feel very fortunate because when I first found out you know, I go on YouTube, of course, right you Google it Yeah. And I was like, oh, dear Lord, right. Like I these people are in wheelchairs and I Having these full body spasms and I haven't experienced that yet, and I feel so thankful that I'm not at that. So I do limit a lot of interaction with, with stressful situations, such as family and in certain friends. I just say I can, I can't, I can no longer be in that relationship because it causes me stress.

Scott Benner 20:23
Yeah. So and, and treatments for this are like sedatives, muscle relaxers and steroids like stuff like that. Right?

Janet 20:30
Yeah. So the one they start you off with, which is what I stayed at. And I was, you know, hesitant, because I told the doctor, I'm like, Okay, let's we have to agree on on my treatment plan. I'm with all my doctors aren't we say we have to agree or else I won't do it. Yeah. So what they do to make sure that they have the right diagnosis as well is they give you 10 milligrams of Valium. So and you're supposed to take that twice a day. So if it doesn't knock you out and put you to sleep, right, then you have stiff person. And sure enough, it just definitely, I agreed that I would I didn't want to take it every single day because you end up there's people that are like 30 milligrams twice a day on Valium, and I just I don't want to live, whatever life I have left. I don't want to live like that. While my symptoms are not major,

Scott Benner 21:17
what are the symptoms? How does it look day to day, day to

Janet 21:21
day, so you know, pretty much you know, I wake up in the morning, and I'm stiff already. So I get out of bed, it takes you know a little bit, I always laugh because I say it feels like somebody like beat the bottom of my feet with a hammer while I was sleeping. So your first couple of steps are just like walking on shards of glass because you're so you don't relax at nighttime. So getting a restful night asleep. You know, on top of the type one diabetes is very difficult, right? So it's just you never your body's always tense. So you wake up in the morning feel like you ran a marathon last night. And then you get up and you get your routine going. But you know, getting up from the couch is a struggle, sometimes some days are better than others too. But I've noticed it's been really, really cold here lately. And the cold has just, it's just been a problem for I've had to take more value than I ever have, and actually have an appointment with a neurologist on Friday to talk about this. But your muscles just they freeze, they lock up. And you know, doing, like doing the dishes is very painful for me. You know, we have this big scene where you have to kind of lean over and wash the dishes. And we're not talking about a lot of dishes. I live for the most part by myself now. And I have to go sit down after I wash the dishes because my upper back just becomes like a vise. Okay, so then driving,

Scott Benner 22:47
can I ask have you tried weed?

Janet 22:50
I have not had to because I you know, I've always been that person. From a very young age, my sister did a lot of drugs. So I have an older sister. And so I was always very anti any kind of drugs. So I've never tried weed. And some people like I'm in some groups, obviously. And some people swear by it. Some people say it doesn't help that haven't gotten there yet. Like in my mind, I think that would be a huge hurdle for me.

Scott Benner 23:20
Can we pick through this for a second? Absolutely. I had this conversation with a doctor recently. They were asking my background. And I you know, I said oh, no, haven't done this. Haven't done that. They said Never. And I said No, never. And they go, okay. And I said, How about you? So the doctor is like a little older than me? And she says no, I never have. And I said why not? And she thought about it. And she said, I think I would feel like I was letting my parents down. And that's when we got to it because this is not a square person. This person I'm talking to do you know what I mean? And I think they know intellectually, and maybe even believe medically, that weed would be fine for them. And then we started talking about how we grew up and how like the messaging was, such as you know, like, don't use drugs. If you do drugs, bad things are gonna happen to you like in my mind, the way we grew up if I do drugs, all my teeth are gonna fall out. I'm gonna live under a bridge. And I'm going to eat out of rusty cans, and I'm gonna have to poop in the road. Like like that's like the LEAP my brain makes right because because that's just what that's what you're describing too. Right that you've been indoctrinated not to do this.

Janet 24:40
Yeah, I think after watching watching my sister and then how it affected our family. I tried to I have a lot of anxiety always have since I was very very young. And so ended up in you know, some psychotherapy due to the fact of trying to be, you know, the perfect wife at the time. Perfect student In perfect daughter, a perfect employee for everything had to be perfect in the world that I lived in. And I saw drugs and alcohol is an imperfection. So I still think that's why I'm hesitant even on the value, because they're like, if you took it every day, you'd feel much better. You'd have a better quality of life. And I'm like, I'm just terrified to be addicted to like anything. Like for some reason? Yeah,

Scott Benner 25:22
no, no. And so I would say, if you came to me privately, and you said that, I'd be like, listen, John, I'd prefer you smoke something like weed, and maybe don't smoke it like fine. I don't know if I'd be up for smoking all the time. But like, you know, a vape, or one of those hot vape I don't know, listen, I don't know a ton about it. But I'm saying like, overvalue like Well, why is it and this is where the argument gets. I always find interesting. Like, why is a pharmaceutical compound? Something that we all go? Yeah, that's fine. But nobody, but when you say like so there's, it's people of a certain age. If I said, Hey, you have a little anxiety. Maybe try smoking some weed, low Tea, tea. What is it? TS, th TCA th c thc. Sorry, there's so many T acronyms I don't even know. So so. So just something with low THC. And I'm not talking about like destroying, like a blunt, like, just have like a couple of puffs and see how you feel. And right away your brain is like, no, I'll become a drug addict, like people that I've known. And I'll live under a bridge, and I don't want to poop in the street. And like, like, you know, and blah, blah, blah or ruin everything. But the truth is, is that I think a massive amount of the population smokes weed. And you know, and I walk around, I keep waiting for Armageddon, it doesn't happen. And so but if I said you here's a pill, take it, and I was a doctor, you go okay,

Janet 26:46
well, yeah, some people me I'm like, the first thing I do is when somebody gives me a prescription as I go online, and I look to see like, I'm one of those and then you know, as growing up as a kid is still today, I was always I never took any drugs because I was for sure going to be that person that it was laced with something and then I was going to end up and I would be a vegetable in a hospital. My mind would know what's going on. But I would be like trapped in my body. It's legal

Scott Benner 27:11
where you live now. Right? Yeah. dispensaries and I mean, you obviously like, I'm gonna get you. I'm gonna get you on the weed. I think while we're talking. So

Janet 27:22
I'm gonna Puff the Magic Dragon.

Scott Benner 27:24
God, yeah. You're older than I am. In your mind. That's amazing. I'm older than you. And in age, you know, forget the age part. You would you went to that that's a reference that just everybody's like, that's what that's from like, yeah. And then there are plenty people like, I don't know what you're talking about. But I don't know. Like, it just seems to me that like, what would it hurt? Like, I don't think it's like you're gonna like because you could go to a dispensary and like bias, but like, you could probably buy single joints. Probably and just tell them like, here's my thing. Get one of those stone kids to look in the face and be like, Listen, tell me why. How do I make this go away? A little bit? I don't know. I'm down with you trying this. Plus you live on a mountain who? Who's there to judge it? Nobody?

Janet 28:13
Yeah, well, actually, we we moved. So after quick story. We moved up there. And we were gonna live there for three years. So it'd be our residence. Right? And oh my gosh, we had a snowstorm now not like the snowstorm they just got, which we're thankful that we don't live there anymore, because they got 10 feet of snow. Yes, it was horrible. I would have, you know, because my husband even said you would have had a panic attack and probably died inside the house because you couldn't see out the window or get out or whatever. And probably so we got three and a half feet when things giving and, and that alone was like it was so hard and our son couldn't get up to help us. And so there we are shoveling snow because we couldn't even get out the front door. And it was just crazy. So then my husband got this wonderful idea. Now he's from he's from a different country. He's from Argentina. But he got this idea to build a beautiful house on the beach in Rosarito, Mexico. And that's where we were going to, you know, live. So we moved down there and then I made it like, a year and a half. And then I'm like, I can't live here anymore. Like, I didn't like it. So I ended up coming back to our very first house that we bought when we got married and we had a renter in it and I told him

Scott Benner 29:29
What didn't you like about Mexico?

Janet 29:32
I didn't like we were in very south Mexico like the southern part of Rosarito. So it was very isolated and wasn't like you had to be home at night like you couldn't you couldn't go anywhere at nighttime. So and it wasn't so much like cartel or anything like that. It was more the drunk gringos driving because you know, in Mexico, they think there's no laws so the roads were very, very dangerous. And you know, the whole thing nothing happens good after dark well That's how it was down there. And, and I enjoy. Now you're gonna laugh at me, but so I enjoy like karaoke and singing and going out and not drinking and just having fun and, and those things don't happen at night. So where I am now I go and and I'm surrounded by like 78 year old people. It's funny, I'm definitely an old soul, I'm in the senior choir here and then I go to karaoke is at this very, very old restaurant. And you know, the first night I sit down, and I'm actually sitting with one of my high school teachers, and it was just kind of funny.

Scott Benner 30:38
I have to admit, we're not all the way through your story. And I don't know if we're gonna figure it out. But you've laid breadcrumbs that I can't connect. So, so you said that I mostly live alone now. And I thought, Oh, she got divorced or somebody died. And then it sounds like you just left him in Mexico.

Janet 30:58
I did. So like, I'll

Scott Benner 30:59
be back. Maybe. How long have you been married? Let all the people let the younger people know how long you have to be married before you go. I don't like Mexico. More than I like you. I gotta go.

Janet 31:12
So this year, this September will be 30 years.

Scott Benner 31:15
That's the number when I could just say, Kelly, I'm gonna leave. I'll be back in about four.

Janet 31:19
Yeah, yeah. So it was kind of crazy, Scott, because we decided that you know, what, like, this is about we're at a point in our life where, you know, our son has grown and, and we've done everything that, you know, we have these businesses that we built, we're both entrepreneurs. And we have everything we need, we're able to retire. So we retired, kind of on the younger side. And but we both want each other to be happy. Yeah. So and he just loves the ocean. He loves to watch the ocean. And I know that sounds terrible, but I don't like the ocean. It's loud. It's distracted. Like, you can never turn it off. It's like this constant noise even when the windows closed.

Scott Benner 31:55
Does it mess with your anxiety? It does.

Janet 31:58
It's I don't have any, like peace there. And so then, and then we have like the quota, which is like their toll road on the other side with the trucks that come down the ramp that are their big eat breaks or whatever they're called. And, and there's just there's a lot of construction because it's newer development. And, and all the people there love to party, and I'm not a party girl. I never have been never will be. And it was just kind of, you know, and then and then I made the mistake of getting on the HOA board as their treasurer because I'm an accountant. Oh, dear Lord, right. Talk about anxiety, stress.

Scott Benner 32:34
So we're not using all this money properly.

Janet 32:36
Yeah, well, no, no, I'm just just the people are just

Scott Benner 32:39
being involved with. Yes. So do I'm so sorry. I'm gonna ask you a horrible. Do you miss your husband day to day?

Janet 32:48
You know, I think we talk more, that we're now that we're like, you know, whatever that is 300 miles apart than we do when we're in the same house. So it's kind of it's kinda interesting.

Scott Benner 33:01
Wow, that the way you talk about it is so free and easy. That yeah, that you don't seem encumbered by that at all. And so I'm interested.

Janet 33:11
Yeah, and he comes like, so for around the holidays. He was here for about six weeks and he's actually here for he leaves this Saturday. He's been here for a month because our son's birthday, and he came up for some doctor's appointments for himself. And if I have a lot of stuff on my agenda, then he'll come up and help out we have two dogs that are rescues and once a handful so he's keeping her at bay right now quiet.

Scott Benner 33:37
Yeah, like Kelly here this or there's no way she's gonna stay here. She's

Janet 33:42
it's actually it's actually a nice after 30 years. And, and our son being grown and out and about, I kind of, I think both of us enjoy having some alone time, if that makes sense. No,

Scott Benner 33:58
it's interesting, because you're not talking about like a dissolution of anything. You don't mention you're not separated. You don't like that's not how you think of any of this, right?

Janet 34:05
No, like you neither one of us have, like, Oh, I'm gonna go out and get myself a boyfriend or girlfriend or I need this we just kind of like I want you to be happy in the ocean makes him super happy. And he loves to watch it and he enjoys you know, watching TV and, and I'm more like, I enjoy it. Well, it's funny because I have like a crocheting group that comes over on to my house on Monday on Mondays and there's like six of us and they actually told me, you don't have to coach anymore because you're so bad at it. I used to actually do something else. I'd be like this little other thing, but it was funny because I am such an anxiety ridden person that I'm so focused on trying to get the little thingy, the stitches or whatever you call them. Correct. And they're so tight, that you can't do proper crochet. They like that. And so after like three weeks, they're like, you know, you don't you have to crochet if you, you know, maybe it's not your thing, Janet and but we'd still love to come over to your house and you can do a different kind of,

Scott Benner 35:12
we liked how clean it is here your food is terrific. So you're gonna love it one day when you move into an old folks home, you're gonna be finally old people the way I like it. Nothing to do everything set up for me, you're gonna be like, 12 o'clock, I gotta go to lunch.

Janet 35:28
Yeah, so I'm like, and then like I said, at the senior center here is 50 plus. So I'm like, you know, senior ukulele. I just started, like, trying to play the ukulele. And then I do the choir. And we go and we perform it, like, you know, what do they call those? Oh, assisted living centers or whatever? Yeah. And, and I, you know, I just figured, like, I just got to try to live the best life that I possibly can live. Because I don't know. And none of us know. But I don't know, when I'm gonna have issues like when Celine Dion came out with, you know, she can't talk anymore. Because she has said person syndrome. You know, all of us in that society are like, we felt bad. But we're like, yes. Finally, there's somebody that people know, that has this, you know, disease. And so we're really hoping to bring some education and hopefully research funds to it because it's so rare. And then I look, I look at her and I think, oh, you know, because she's probably, you know, yeah, you sometimes have throat spasms. I haven't experienced that. But she probably can't walk around and get around the stage as much as she'd like to. So that's probably what's limiting her

Scott Benner 36:38
weight limits people's ages. How does it do it? Like through stiffening of organs?

Janet 36:43
Yeah, so Oh, yeah. So like, so when I'm driving a car, I think that was gonna take so if I'm, I'm driving along, right? minding my own business, and everything's good. And then somebody's like, honks their horn. And so if you, we have a startle reflex. So when we get startled, we normally have a spasm. And so when I'm driving, it seems to be like my diaphragm. So like, it just literally takes my breath away. Like, I just can barely breathe. And I'm like, try not to, you know, fixate on that and, and then like, looking over my shoulder, thank God, I have my car that has all the beeping that goes on, if I get in the wrong lane, or somebody's next to me, but like, even like looking over your shoulder can cause a spasm. I just like

Scott Benner 37:27
I was totally interesting. Hold on a second, you said like, do you try to? Is it possible to control them with, like relaxation techniques,

Janet 37:35
I tend to, like, try to so the the best thing I do is, if I lay down, everyone laughs because I gotta go lay down. I'm not talking about sleeping. Like I'm not, I don't need to take a nap. But if I get horizontal, like during the middle of the day, for at least 2030 minutes, then the rest of the day is okay. But if I don't get that, that rest and relaxation, where I'm just like, Okay, I'm not moving, I'm not doing anything, then I'm usually in extreme pain by the by the end of the evening. So, yeah, I think

Scott Benner 38:10
I'm not a doctor job. I think that's obvious if you listen to the podcast, possible that I'm not even a high school graduate. But I mean, I did technically get the paper. But I think you should smoke weed. I really, I mean, it just seems like obvious to me. And again, I'm not talking about and you're on? I'm not talking about like, you shouldn't be, I'm not telling you to smoke all day long or anything like that. But I would just wonder if a few puffs before bed wouldn't be a good place to start and see if you don't wake up feeling better. And if that's the case, then maybe you do a little bit, like on a schedule. Do you don't I mean? Yeah,

Janet 38:49
yeah. So after this podcast, I'll be like googling all this. You're telling me because Oh, my

Scott Benner 38:55
God. You haven't? I have? No, I've googled the hell out of it. Just while we're talking. A lot of people.

Janet 39:01
I have no idea. I have no idea how we eat or marijuana, whatever you want to call it affects people. Like I don't know if some people are affected in one way and some people are affected another way. I have no idea.

Scott Benner 39:12
I have a question. I'm gonna start asking people this question all the time. Describe how you think it's going to be

Janet 39:19
I guess I, I revert to my high school days where I think I'm going to be just like, yeah, man, and, you know, just stupid. And I'm an intelligent woman. So I wouldn't ever want to come off like, like brain dead. So that's kind of that's what I think.

Scott Benner 39:34
But you're by yourself in the house. Nobody's saying Yeah. You can call me if you want. If you start saying stupid shit. I'll talk to you. Here's what I'm thinking we should do. Maybe I should get weed and smoke it on the podcast, and then we'll, we'll find out. How's that? You tell me how to fix you and then maybe I'll try. I guarantee you. If it's based on the rest of my life, nothing will happen. I'll just be like, Oh, another thing other people enjoy. way that I'm getting nothing from.

Janet 40:01
Right. That's what I hear that too. Like, maybe it doesn't do anything to some people.

Scott Benner 40:06
So, no, I think it's gonna get you good. But I just think a little bit. No. All right, that's it. Let's get past that I'm sorry stiff person syndrome terrible anything else?

Janet 40:17
Let's see for me no.

Scott Benner 40:19
All right well, diabetes.

Janet 40:21
Okay well yeah my type one so

Scott Benner 40:23
does the cold urticaria still happen?

Janet 40:26
No, you know, it was something I grew out of about about 1314 So in my teenage years,

Scott Benner 40:31
how's your energy?

Janet 40:33
You know, I get tired but like they have before this before having the diagnosis of stiff person I think I dwelled on it more like oh my god, I'm tired all the time. Because when I went back to look through my my bloodwork, I'm like, man, they ran like my thyroid test and like, over and over and over and I'm, it's fine. Like, I've never had an issue with it. So but I get tired, but I kind of contributed to like, I'm pretty active. So you know, I'm not the woe is me person and lay in bed all day.

Scott Benner 41:06
Right? Right. So of these issues, obviously the cold eldercare is not an issue anymore stiff persons is it seems like a pretty overwhelming but a Lago we've given up on filling in those holes. How what do you think of more during the day? Do you think more about type one or the stiffness?

Janet 41:25
I think during the day, more On My Mind is the type one because I think I have more control over that than I do this stiff person syndrome.

Scott Benner 41:34
Okay. Prior to being intimate with your husband has he ever said oh, you're giving me stiff person syndrome be honest. No, I feel like you're lying about that. But that's okay. All right. So such an obvious Do you know that we brought up Celine Dion Dion? I thought Oh, I bet you she regrets singing a song called My Heart Will Go On. And I never said that out loud because it seemed inappropriate, but I just Alright, there's been no inappropriate dialogue about stiffness with you and a man.

Janet 42:13
No, because you know, before the Celine Dion I never told hardly anyone, even my parents. No one really knew because it sounded like so made up like it was.

Scott Benner 42:23
It's got a hokey name. Yeah, I'm with you on that.

Janet 42:28
Used to be called Tin Man. They call it Tin Man. And they used to be they used to call it stiff Man Syndrome, but more women have it than men. And it was just I was told for so long. Oh, it's all in your head. It's all in your head. Just exercise, you're gonna feel better, just you know. And then to finally be like, Oh, my gosh, I'm not crazy, you know?

Scott Benner 42:46
Yeah. You said earlier, you didn't do that. They talked about giving you like antidepressants. Did you ever try them? Yeah, I tried

Janet 42:55
them one time. And they had put me on Wellbutrin. And my husband he he had he restored it when he bought cars from auctions and then restored them like mostly classic cars, and then resold them mostly to Europe. Right? That's his job. So while I was on that, for a short period of time, he sent me to an auto auction to bet on some cars. And it was bad because the Wellbutrin gave me this. I'm like, like, I don't know, can't touch this kind of syndrome, you know. And so I was like, over Betty and I bought all these cars that were like, I paid way too much money for and, and I got home and he's just like, What in the world? I'm like, I don't know, I was just like an outer body experience.

Scott Benner 43:43
We own a $40,000 Pinto. It was really good paint on it. We'll sell it to a French person, it will be fine.

Janet 43:50
Yes. And he wasn't mad at me. He was just like, Okay, well, you're never going good. And I told them I said, I don't even know what happened. It's like something overcame me and, and I had when I was on it, I just had this like, I could do anything. What do you

Unknown Speaker 44:04
think of yourself as depressed? You know,

Janet 44:06
I think since I had some really difficult years that came, they started in 2016. And from 2016 to 2020 Well, probably when I moved I was able to move back from Mexico. Yeah, you know, and, and day that I'm better every day I'm getting better and better. But let me tell you that depression is real. So

Scott Benner 44:34
here because what you felt was likely the lifting of the Depression. Yeah, with the Wellbutrin? Well, yeah,

Janet 44:40
like I said, I it scared me so bad that I was like, No, I'm not taking this. So

Scott Benner 44:46
that was it. You start turning into yourself and you're like, I don't like me at all.

Janet 44:49
Yeah, it was just well, it's like an alter ego, like some like Superwoman, kind of,

Scott Benner 44:54
so you see yourself more as reserved and intelligent. And, and measured. Yes. And when you're not when you're not, you don't like that about yourself?

Janet 45:05
Yes, that's accurate.

Scott Benner 45:09
Okay, there are there are lines to draw together here. I don't know what they are yet. Do you see them?

Janet 45:18
I do because but then I perform, you know, I go out and I sing in front of strangers, and I do other things that that are more, you know, outside of my, my normal what I would say personality,

Scott Benner 45:33
but still a controlled environment, though, right, you're part of a group you show up at a plan, etc? Would you stop in the middle of the mall and start singing?

Janet 45:41
No, not unless I was trying to like embarrass my son or something.

Scott Benner 45:47
So I don't mean to infer because obviously, again, not a doctor. And there's a lot going on here. But there seems to be a through line between how your body acts and how your mind acts.

Janet 45:59
I think so. Yes.

Scott Benner 46:01
Were there ever times in Mexico where your stiff syndrome went away? Or was it worse?

Janet 46:07
It was worse because my anxiety was like off the roof. You know, like I was I felt suffocated and trapped. And it was an angry all the time it was it was really bad.

Scott Benner 46:20
And when you go to the mountains, it's not that relaxing, because now it's colder there. And they're draining isolated, and you're isolated, which you don't like either. So yeah, I like being around people, but not people who make a lot of noise or a lot of commotion.

Janet 46:36
Yeah, so I up there I in the mountains, I tried to join a women's group, which I have more male friends and I do female friends just because of the cattiness and drama right? So I'm like, Okay, well, I need to find something up here. And I had just, we moved up there in 2018. And that month, I mean, it was probably a week before we moved up there. We had my husband's friend had come to stay with us for just less than 24 hours. And, you know, he ended up committing suicide in our home and I was there. So my god I was in. Yeah, I was in a bad place. So we moved to the mountains, like almost immediately, and isolation and I was like recognizing that, okay, I have to like, find something. So I joined this women's group through the church and, and it was okay, like I said, first experience, but the mountain people were very, if you weren't born and raised on the mountain, then you'll never, you'll never be part of our, our culture type thing. So I had made friends with another lady that had just moved from Austin, Texas, and her and I kind of hung out and she she definitely she was older than me and she definitely helped get me centered and, and move past that part of my anxiety. And, you know,

Speaker 3 47:58
yeah, so that was, that was tough. Sorry, that's a lot. It was a lot. It was like, yeah, when you invite

Scott Benner 48:07
somebody to live in your house for a little while, like you think they're gonna leave hair in the bathroom, in the middle, like, probably not gonna eat on our schedule, like those of you don't. And this was that an out of the blue thing.

Janet 48:18
It was, it was a lifelong friend of my husband's. And when we first had bought our first house, he had come to live with us, right? He had just come to from Argentina to get himself situated. So he lived with us at that point for about eight months. This is before children and everything, you know, we were never here anyway. So we're like, okay, and he got himself settled and did very well. Hadn't, hadn't heard from him in about 10 years, but now things haven't gone. He's you know, married, he's got a child, the same age as ours. And, and, you know, out of the blue, we get a phone call, Hey, you know, I don't have anywhere to stay, can I come visit you and maybe stay with you a little bit. And we were kind of like, wait, what, you know, as far as we knew, he was married with his child, whatever. And so my husband being my husband said, Sure, you know, come on, and, and he came over and everything seemed okay. I mean, he definitely had some issues going on, but we didn't think that that was going to happen,

Scott Benner 49:15
right? No, I mean, how would you like that? That's Wow. Yeah. Where? Well, hold on. How do you manage your diabetes? Here you MDI use a pump? Do you have a CGM?

Janet 49:28
So I do that I have the Deaf Dexcom six, and I have the Omni pod fi which I just started in January of this year.

Speaker 3 49:37
Oh, how are you finding it? Good, you know,

Janet 49:40
thankful for your podcast. Let me tell you, that's a funny story. Because you know, I was on the I was on the euros from 2017. And then the dash from I think I started it in early 2020. So then the Omnipod five I needed to wait for a second because of ice Switched insurances from being $3,000 for it to three, or you know, zero copay. So I was like, Okay, I could wait. So I go on it no training girl, the girl called me and she said, Wait, what's our appointment floor? And I said, I think it's training for the Omni pod. And she's like, Oh, you don't need training, just watch the videos, you'll be fine. So I was like, All right. So then, after seeing on your Facebook group, you know, like, yeah, I was experiencing the same thing everybody else did. It was fantastic. I wasn't having lows at night, I was finally sleeping, you know, through the night last, you know, 20? Well, 24 years, I say, because once you have children, you never sleep the same, right? And then, and then I was having the highs. And so then I listened to your Pro Tip series. And I'm like, Oh, the light bulb went off, you know, like, okay, I can do this. Keep it in automated work through it. Correct? Correct. Correct. Correct. Correct. You know, and it's going really well, for me, I'm definitely using more insulin now. But, you know, my I'm like, 80% of the time and range. So good for you. Yeah.

Scott Benner 51:02
Well, that's excellent. I'm glad it was awful. And I'm glad it's, I mean, I'm glad it's working for Where do you keep, you're able to say,

Janet 51:09
oh, so my last one was 6.8. So I'm hoping to improve upon that. But a funny story is, my endocrinologist called me the other day. And she's like, Oh, congratulations, you know, you're down from 7.1 to 6.8. And, and then then she says to me, Well, I noticed that your evening from like six to 10, your sugars are running a little high. And so I say to her, I said, Well, I think most of that is because, you know, I've eaten my dinner, like, you know, probably like by five, and then you know, the whole stiff person syndrome by six, I'm done. Like, I need to lay down and be done. I can't be up and around doing stuff. And I think that's probably lack of movement around. And so she says to me, she goes, Well, I want you to go in and increase your Basal during that period. So then I say to her, I'm like, Well, I don't think that's going to work because I'm trying to stay in automated mode the whole time. And I've just been trying to correct those highs. She's like, No, no, no, no, no, you need to change your Basal rate for that period. And so the nice, I mean, 20 minutes later, she finally said, Wait, are you telling me that, that it works like some other pump? I don't even know what she's talking about. And

Scott Benner 52:33
you're sitting there having a conversation with somebody and they don't know how you're on the pod five works?

Janet 52:38
Yes. Because then she says to me, I said, I listened to the juice box podcast, which is funny, because in my notes afterwards, she but she's been listening to something called Juicebox Podcast. And you could clearly tell she was annoyed with me. But I kept just saying to her like, but I need you to listen to me. Like, I think that you're not correct. She's like, I've been telling people for seven months or whatever, that you know that it does an automatic an automated mode, pick up your new Basal rates that you're putting in and I'm like, Well, I'm just telling you that that's not how I understand it. So then she agreed to go back and research with her Omni pod rep.

Scott Benner 53:17
Right? Find out that she was wrong. Right? Yeah. So hey, I'm having an idea, Janet, for your episode. When I come on and edit it later. I might start it like this. I might go Hello, friends, and welcome to blah, blah, blah, episode of The Juicebox Podcast. There we go. I might do that just for her. Okay, yeah.

Janet 53:36
So in my notes, you know, because you can always go and see your after summary notes or whatever. There was an email in there to me, she she emailed me and said, After further research, she believes that what I said was correct, but she's going to double make sure with somebody else. So

Scott Benner 53:51
she thought you were wrong. double checked. found out you were right. Still want to give up? Yeah, cuz she doesn't want the Juicebox Podcast to be something that she doesn't know about. And that it works better than Oh, yeah. So how long did she fight that one? So she was like, Hey, you're right. That's not how that works.

Janet 54:08
Yes, after like I said, 20 minutes later, it was like legit 20 minutes. And then I just said, Will you agree to like, in she's like, well, if you're, if you're right, you're telling me I think she said the Medtronic is that sound right? It works like the whatever I told her I don't know it's first pump I've ever been on I'm just telling you that I don't think changing my Basal rate is going to help me if I stay in the automatic mode

Scott Benner 54:32
on the pod five takes settings that you give it on day one, and it makes decisions with those settings. But if you go back and say I know I told you one unit of insulin is my Basal rate, but I really should have said 1.3 and you change it you will change that setting but it will only work in manual mode that way. Okay. It's that's what I thought Yeah, the best. The best way to train the Omnipod five is to start with good solid settings right that that are reflective of your insulin needs probably be a little closer to 5050 Basal to Bolus. And once you're on it, if you get high Bolus, like help it, like if you go to 200 and sit there, Bolus because then the algorithms like well, I thought this much, but obviously we needed this much and it'll start to adjust off of that.

Speaker 3 55:22
Yes. Okay. That's that's what I that's what you were doing.

Scott Benner 55:25
Yeah. Except your your medical professional didn't do you think someone from all the pods listening right now going? What more do you think we could do? And then just rubbing their head really hard? But yeah, I mean, I get it. Like, they're, I mean, they're at this point. Now, you need to know how to talk to people about how to use you know, loop and control IQ and Omnipod five, and Medtronic has an algorithm. And like, in the end, there's the way you would talk about diabetes somebody if they were just using a regular pumper and MDI and probably gets confusing after a while. Not everybody's like, as giddy as I am when, you know, talking about stuff like this.

Janet 56:02
I think it's I think it's, it was frustrating for me, but whatever.

Unknown Speaker 56:05
Yeah, no. Good. So,

Janet 56:09
okay, so I want to run quickly through my auto immunes as quickly as possible and my family so you can see. Wow, right. So, you know, sister, endometriosis, pelvic inflammatory disease, mom. She has ITP. So the immune thrombocytopenia, things how you say it, and then she has fibroid, but she's not sure if it's how she motives or not. So I'm like, Okay.

Scott Benner 56:36
Well, your mom has a blood clotting disorder. Yes.

Janet 56:39
So she's low platelets. But then I when I was looking at that cold urticaria thing for me, because I knew it had a name. I just didn't know what it was. I I came across something called a cold ag gluten disease, which is like C ad. And I told my mom, I said, I think you need to give that because she has every single one of those symptoms. So I said, I think you need to give that to your blood person doctor and see if that's maybe because it's very, very rare to so and then everything's on Wi

Scott Benner 57:09
Fi is a problem with histamines. Excuse me.

Janet 57:13
I think so. Yeah. She has some really weird stuff going on. And so I told her, I think you should not ignore this and you should dig into it, mom, but you know, she's 76. So she's like,

Unknown Speaker 57:27
just today, it's almost over?

Janet 57:29
Yes, yes. She's like, I'm just counting the day like a Claritin,

Scott Benner 57:34
or is there a tech or something even might be valuable taken once a day just to see if she sees any difference? So she get like hives and swelling

Janet 57:42
as she does? She doesn't I mean, yeah, she doesn't like she said shingles like three times she has all these weird things. And so I just actually started her on the digestive enzymes that you had referred. And I've been taking them and it's made a huge difference. Do tell, please. Yeah, she has. She has like irritable bowel syndrome, and colitis, and all that good stuff. And so I told her, I'm like, I'm like, take these and see how you feel. And so she got them a couple of days ago. So I'm going to check in with her. And I started taking them probably about three weeks ago, and I noticed a huge difference. So like, everything's more regular now and like dairy doesn't affect me as much and kind of like her

Speaker 3 58:22
and talk. But stomach doesn't hurt. Yes,

Janet 58:25
my stomach doesn't hurt after eating. So that's a huge for me, like I've struggled with that my entire life.

Scott Benner 58:31
Yeah, all you needed was for my daughter to have a similar problem. And then you find the podcast, they were also

Janet 58:36
I know, right? So I'm going to order those. I ordered them on Amazon. And they came and I'm like, I'm gonna try so

Scott Benner 58:42
good for you. It only took me three years of banging my head on this desk that I'm sitting right next to right now to figure out what to do. That's all it's just conversations and doctor's appointments and standing back and going like this here. This could be this ruling out a bunch of stuff, and then going at it from like, a common sense perspective. And truth is without the podcast, your stomach still hurts and so does Ardennes. Because I wouldn't have, I wouldn't have had the time to think about it. I'm

Janet 59:11
very thankful. People like it. It won't hurt to try. So you should try them.

Scott Benner 59:17
You know, it's similar. Like when people have like, Well, my TSH is like three but my doctor won't give me thyroid medication. Like just try it. Because if your symptoms start going away, you know, great, and if not, doesn't hurt anything to try. Yeah, it's not like you're taking a medication that's going to you know, make your foot fall off. If it's the wrong medication. You try it and it's not what you need. It's not what you need. If it is what you need. Great. Yep. All right. So wait, keep going with the family stuff. And by the way, what else was I gonna say about your mom? I thought of something and it fell out of my head. Oh, are you sure she has colitis? Or is it possible? She's celiac.

Janet 59:57
I don't think she's celiac. I think she's been tested for that.

Scott Benner 1:00:00
So, okay, well, alright, so what else?

Janet 1:00:04
Okay, so at number one, you know she has psoriasis and number two vasculitis, rheumatory arthritis. And number three has lupus, Ms. Psoriasis, psoriatic arthritis. Her daughter has Potts. And then you know, my grandma had the middle, the middle ego. And then you know, it's question. They're like, well, you know, when she was really bad with her Alzheimer's, we were giving her insulin. And I said, So was she a type one? We don't know. Her blood sugar's were like 400. And we would call and they would just tell us to inject her with some insulin. And to not worry too much because she was dying anyway. So they're like, oh, my gosh. So they can't tell me if she was type one or two. So which is which is not helpful for me? Of course, right?

Unknown Speaker 1:00:54
Yeah. Frustrating that she?

Janet 1:00:56
Yeah. So then she had psoriasis. And then my son so far, he just has a little bit eczema. So you know, like atopic dermatitis. So, so far, I'm hoping he gets more of his dad's genes. So that's autoimmune.

Scott Benner 1:01:09
Yeah. Do you have him tested for like, at as well visits? Do they look at his thyroid? Did they look at stuff like that?

Janet 1:01:16
You know, I try so hard with him. The good thing is he was he was an athlete in for college. So they did some testing. You know, he played water polo since he was nine and got a scholarship to go play and so that he the problem with him is you when you go to draw his blood, he like throws up and passes out. It's like, it's not okay, dramatic. Yeah. So trying to get him but every once in a while, I'll like, hold him down and like, test his blood just to see to make sure you know that he's in range. But he's getting married at the end of this year to a girl that's going to be a nurse. So I told her, I'm like, he's gonna become your problem.

Unknown Speaker 1:01:53
Yeah, exactly. Good luck. Yeah.

Janet 1:01:56
But he was dating a girl, like, pretty seriously for a while where the mom had same as me, and I'll type one, but later in life, and then I said to him, I'm like, oh, man, dude, like, I don't know. You know, supposed to be not hereditary, but you never know. Right? So,

Scott Benner 1:02:13
you know, I don't understand how people can do I just misunderstand the word hereditary. Because, like, I don't I don't understand how so many people can come out and talk about all of these connections have auto immune through their families then go but type ones not hereditary. No, but auto immune issues are. So yeah, yeah.

Janet 1:02:36
So and I'll tell you a quick story on that. So okay, so how, how did my type one diagnosis happen? It's kind of interesting. So you know, I'm going on through life, everything's fine, super thin as a kid, you know, and always had issues with food I never wanted to eat and like, because my stomach always hurt, basically. Right. So then I you know, get married, everything's fine. Have my son. I'm not no gestational diabetes, everything is fine. So then, in 2004, we decided, okay, you know, we need health insurance. I mean, life insurance, because now we have a kid. So I have the fasting blood, you know, it's fine at one. Perfect. So then, that was the end of 2014, January 2005. Again, I'm like, I'm gonna get in shape. I'm gonna drop this baby weight, right? I call it baby weight. But you know what my kids like, oh, six now. I'm like, I'm gonna drop it. So I start doing all this intense exercise. And I have like my first abnormal period ever in my life. So I'm like, Well, you know, my whole family's had all these fibroid tumors. All the women have already had hysterectomy is by this time, you know, so I'll go to the gynecologist and make sure nothing's going on. So you know, they do the ultrasound, and they do the endo vaginal ultrasound, and they're like, Oh, you're fine. As far as your gynecological stuff, but we observed a high hydro ureter on your right side. You don't really see an obstruction but you know, you're going to have to go to urologist because this can be really dangerous. And I'm like, okay, but I feel fine. No problem. So I go see the neurologist now. I mean, the urologist so I don't know if you've ever been to urologist but every time you go the first thing they do is make you pee in a cup right? And they test your urine and then you go back and everything's fine. I've no sugar in my urine. Everything's fine. So then the lady's like yeah, if you have a uterus heal this can be really dangerous because you know it backs up the urine into your kidney and then you could have kidney failure and kidney transplant so I'm like oh my god right. Chicken Little right for me the sky is

Scott Benner 1:04:48
falling like free you're not good with stuff like this to begin with. No,

Janet 1:04:52
no, no, I'm all in I'm researching it now. Right? Like, oh my god, what is this thing that like? They think I have right so me not being very well, at this point. I didn't question the doctors I think as much as as I do now. Definitely. So they ordered a you know, a CT. Okay, that seems pretty harmless. Right? Okay, non invasive. So with contrast and like okay, everything went well and they are Yeah, it just it shows something on the right little kidney stone and a little bit of my right kidneys a little enlarged and blah, blah, blah. So, so I go back and then she's like, Yeah, but we have to do further testing. I'm like, Okay, so now they do, like, another ultrasound and they're like, Okay, yeah, we still see something. No, no sugar in my urine still, but I'm gaining weight now. So then they do this test. Avoiding Sisto youth or gram. So you basically lay on a table, they put an IV in you, right? And then you're supposed to pee on the table. Like, they put towels into you and you're supposed to pee in front of all these people and like, I couldn't do it obviously because I'm like, I just can't do it. So then you they let me go to the bathroom and then they come back and they said, No, there's no evidence of reflux. So I'm like, Okay, so now I'm thinking okay, I'm done, right? Yeah. And still no sugar in the urine. So then she's like, well, you know what we do have to do you know, one more test because we have to make sure because this could be like, between meeting a kidney and kidney and I'm like, okay, so it was called a LASIK. augmentin, Reno gram. So I looked it all up and then I saw that, like, LASIK had like some sulfur in it, but a trace amount. And so they said, hey, you know, I'm really allergic to sulfa. So Oh, no, you'll be fine. And then I noticed like, the nurse was sick. She was like, Coffeen, and didn't think much of it. So they inject you with this LASIK, and you have an IV and you and you have a catheter, and you and they just basically watch you know, it all go down, and how it, it flows out. So yes, everything, it just shows my my right uterus a little bit smaller than my left. But I woke up the next morning with a fever, like, 103 chills, and I called the doctor and they, they prescribed like, macro datain. And then I had some allergic reaction to it. So again, you know, I call the doctor, I'm like, Uh, hey, I'm having an allergic reaction to this, and the nurses all like, oh, just keep taking the medicine. I'm like, oh, man, keep in taking the medicine. So I went into the doctor in like, two days later, they test my sugar. They tested my urine and they're like, oh, my gosh, you're a diabetic. So like, overnight, like, boom,

Scott Benner 1:07:28
figure that out? No problem. Right.

Janet 1:07:31
So then, but my fasting blood glucose is only like 154. Okay, so, okay. So then I'm thinking, you know, what, my kidneys are probably just like overtaxed. Right, right. Because, like, you've been doing all this stuff to me, and then I got sick. And then I had this medication that I was allergic to, and, you know, so I'm just thinking, Okay, it's, it's going to take time. So, it went on, you know, I went, I went and they're like, Okay, yeah, you're kind of your, your type two. Because, you know, you weigh like, 165 at this time. So you know, I'm five, four, lose some weight, because you're, you know, the Sabbath. So I'm like, okay, it just keeps it this goes on for years. And I'm talking about years. So type two, now I'm running. Okay, so I'm down to like, 130. And now my doctor is like, You look sick, you don't look healthy anymore. Like, you know, are you sure you're eating enough? Or not helpful? And then in my control issues in my anxiety, I'm like, feeling horrible about myself because I'm like, why can't I get better? What's going on? Why can I not get better? And then my numbers, she has me like taking Actos and by Janna in and I couldn't tolerate Metformin, it hurt my stomach too much. And I mean, she tried like every drug that was in her, you know, Januvia and everything that was in her little case up there. I think I tried. And so I, when was this it was about was in 2000? Oh, yeah, it was October 2010. I even wrote my notes here. I get I get mad at this point. Like, I'm, I'm pissed because my I'm down to like, 140. My agency is 7.9 at this point. And she says to me, I think you're just too stressed. You should probably quit your job. And I'm like, Yeah, because it wouldn't be stressful if I just sat home and did nothing. I own my own company and like, right, like

Scott Benner 1:09:30
the reaction to the test result was you should quit your job.

Janet 1:09:34
Yes, that's what she told me. She just I don't know what else to tell you. Because I think this is just your anxiety that's making my and I'm taking a ton of medication at this point

Scott Benner 1:09:43
where she thinks you have almost an eight a one C because of anxiety. Yes, yes. Do you do you live under the imaginary bridge that we talked about earlier? Like where are you finding these doctors that

Janet 1:09:54
well, and this was a very well known and liked endo in the area.

Scott Benner 1:10:00
All right. She didn't talk about this, like, maybe we should use more insulin.

Janet 1:10:03
Yeah. Yeah, here's the thing, because I think at that point, I was on l'avenir and something else but so I just I lose my I lose my mind at this point. Right. So I'm like, Yeah, so I tell my husband, I said, you know, I think I think I'm allergic to something or something's going on. There's, there's something else going on. Because look at how thin I am. And like, you see what I eat. Like, I was basically just eating like salad with like, a little bit of vinegar and oil on it. And, you know, that's it. And so I decided to go to like a naturopathic doctor in the area who is new to the area, I'm like, Okay, I'm gonna go see what he can do for me. So the first thing he says to me, he's like, Wait, you're a type two? And I said, Yeah, that's what they tell me. And he's like, Well, have you ever been tested for get 65? And I'm like, I don't even know what that is. So my answer is going to be no, I guess. So. He's like, let's do that first. So he tested me. And sure enough, I'm positive. So then he said to me at that point, he said, You need to find an endocrinologist that knows what they're doing. Because you need insulin, like you're never gonna get better on these medications that you're on, right. Yeah. So I came home. And I, I emailed two of the big major centers out here, which is UCLA, and then Loma Linda. So either direction of me, and the director of the diabetes Center, and UCLA call me like from his personal cell phone. He's like, hey, you know, I want your case, while you drive out here. It was like, it's an hour with no traffic. But in traffic, it could be two to three hours. So I'm like, Yeah, sure, no problem. So I go out there. And he explains to me, and I don't know if this is true or not, but I'm gonna tell you what he said to me.

Scott Benner 1:11:48
Go ahead. Okay.

Janet 1:11:50
So he said, what you have is with your Gad, 65 He goes, it's luck of the draw. Like it's not hereditary. You were born with Gad, 65. And he said, in some people will develop type one diabetes from that, and some people don't. He said, The reason that we know this is because there was a lady in he said, and the kids are about your age now. And I think I was about 14 at that time. Said, triplets, identical triplets. He said, so therefore, you know, they share the same DNA. And I'm like, okay, I get that part. He said, one comes out, full diabetic from the beginning, like, boom, the second one developed diabetes at 27. And then the other one was about 40. And still did not have diabetes, but they were all gad. 65 Positive. So I thought that was weird. I was first time someone ever, you know. Yeah. So you can you can be get 65 positive and never have any ailments apparently from it. But any kind of, he told me like any kind of trigger, like an illness, very stressful, dramatic situation, like, anything that like, brings your body down could set that into motion. And so he felt like, yes, the thing with my kidney, because they got kind of compromised, is how I ended up on the path that I'm on is crazy. So he immediately put me on insulin. And then I went on the Dexcom in 2013, because I was I was bad, too. I was the person that was running around, doing so many things. I you know, I never missed one of my son's games ever. Like, I've never missed anything in his life. That was something that was really important to me, the only child, I never wanted him to be the person that looked out into the audience and didn't have his mom or dad, they're watching him do whatever it was school, play whatever it was. So I was running around doing all that and taking horrible care. I mean, at one point, my agency was like, 11.1 Because I was just putting Janet last, you know, everybody else came in front of me. So he put me on. Like, I think I was on levemir Jardiance. And then, you know, my agency was slowly going down. He got me on Victoza and then the human log in then in 2017. He ended up retiring but in 2017 I ended up going on the Omni pod, which was like the best thing I could have done for my lifestyle. So

Scott Benner 1:14:30
do you think it was like a lot of presentation?

Janet 1:14:34
Yeah, definitely. Yeah.

Scott Benner 1:14:37
Well, I mean, that was confusing for doctors. Like there's just no doubt but seeing the the antibody testing should let them know this is type one, just a slow progression.

Janet 1:14:49
Yeah, that she didn't even so when I went back to that I ended up sending that a letter to the first endocrinologist saying hey, you know, this neuropathic doctor he ran this test and and I even tried to work with her, you know? And then she's like, well, you know, some people believe in that some people don't. You have type two diabetes, and you just you know, and she just would not budge. So that's when I was like, Okay,

I'm done with you.

Scott Benner 1:15:10
Yeah, you have a bad string of luck with physicians, that's for sure. Can I ask you a question? Is that you?

Janet 1:15:17
I always probably is,

Scott Benner 1:15:18
I mean, do you have like, I don't mean this poorly, because, but do like, do you start off on the wrong foot? Do you think you put people on the defensive? And then they kind of give you or do you go in there and let them talk? And like, what's your vibe when you see a new doctor?

Janet 1:15:36
Yes, so I definitely do better with men. Male physicians know why. I think sometimes women see me as like a threat kind of overbearing, because I am intelligent. And I'm not afraid to like, ask questions. So like, I was brought up in a home where you just authority was always like, Oh, yes, yes, yes. You just take everything that the person says. And then probably, you know, in my, I don't know, mid 30s, I started to question like, Okay, I know, you're a doctor, and you're supposed to be like, smart and all this stuff, but you don't know everything, you know, and, and I definitely am a person that does research. So yeah, I could see where, like, I put people off, because I know my parents get uncomfortable when I go to the doctor with them. And then I speak up and say something on their behalf. And they're like, and then the doctor will be like, No, that's a good question. Yeah, there's,

Scott Benner 1:16:34
there's a difference between asking good questions, and giving people the feeling like you're not listening. Yeah. Because you feel like, you know, and it's just, I mean, it's a tough thing. I do my best to I sit back and listen. And even when I have thoughts are just like, Well, I'm gonna let this person finish talking. Because otherwise, I mean, you run the risk of a couple of things, you run the risk of giving them the impression, you're not really there for their help. And then they're like, Well, if you're not here to listen to what I have to say them, what's the point of this? And I think you can also kind of turn people off sometimes if you have answers, and they're just like, wow, like, that person came to me, but they knew already, like, you know, juicy box. And so, and then that rubs people that can rub some people, don't you also meet doctors who are like, Oh, that's brilliant. I'm glad you brought that up. But, you know, it's a lot of personality stuff that, that I don't think we consider, like when we're going to doctors, that you're still having a human interaction with somebody. And yeah,

Janet 1:17:39
and I think I've always been, like, socially awkward anyways. So yeah, I noticed, like, throughout my lifetime, like I told you before I get along better with men and even boys when I was younger than I do with women, and especially women that have like, low self esteem, like they just automatically hate me. And I don't know if it's just the way I carry myself

Scott Benner 1:18:05
or janitor, this women have anything in common with your mom.

Janet 1:18:10
Just one of my aunts?

Unknown Speaker 1:18:11
Is that what you mean? No. I

Scott Benner 1:18:13
mean, in general, like do the women that you don't do well with? Are they reminiscent of your mom's personality?

Janet 1:18:19
No, not at all. My mom's a very loving, caring, non judgmental individual. Okay. So I think, you know, I always tell people that I hang out with like, or if I have to work with them, especially, you know, like, you need to be like blunt with me. Because like, if you don't say, hey, you know what, I hate you. And I think you're being the, you know, that which right now, right? I don't, I don't pick up on those social cues. I think everything's just fine. Because I don't read into every situation. And I think that's why I get along with men better because men are much more. Most men are much better communicators when it comes to like, I need this done. And so then

Scott Benner 1:19:04
you don't like picking through people's feelings to figure out what they want. You just want somebody Exactly.

Janet 1:19:09
Yeah. All right, but I'm always respectful. I always I, you know, I ran my business, you know, respect professionalism, you know, consistency, and fairness. But I don't have the time to coddle people. And I think that's where I think that's where I have my issues where I always say, Please, and thank you. It's not that I'm not It's not that I'm rude. It's just a self assurance that, that some people can't, you know, I think, you know, I was a natural born leader. So people just naturally followed me no matter what, and even if I didn't want them to, and I don't, I don't know, like what's happened, but I did recognize that around 2021 You know, I had an aunt say, like, you know, you're so intimidating. And I'm like, Oh, my gosh, I just think I'm the nicest person ever,

Unknown Speaker 1:19:56
and you're intimidating. Yes,

Janet 1:20:01
they people see me I hear that a lot people see me as intimidating.

Unknown Speaker 1:20:05
Are you? Are you brash?

Unknown Speaker 1:20:08
I think I'm direct. Why? Why? Why won't

Scott Benner 1:20:12
you play the human game? What is it you're trying to avoid?

Janet 1:20:17
You know, it's almost like I don't think about it. Like, like, I don't I don't I have a very, I, I rarely cry. I rarely get super excited. I'm just very like, cool. Like, and my husband always says, like, you're I love you because like, it sounds weird. But he's like, you're like a man's mentality in a woman's body? Because I just, I don't know, I don't, I don't like to play those games, if you got something to say, just say it. But the problem is, is that's how I am too. And that doesn't always sit

Speaker 3 1:20:50
well. With Others, like I understand. I do. Does that make sense? It does. Yeah. Are there? I'm sorry. Good. No. So when I

Janet 1:21:00
have a woman physician, it seems to usually go that way.

Scott Benner 1:21:06
Is there anything we haven't talked about that you wanted to cover?

Janet 1:21:10
I just think that just because, you know, I think I mentioned it before. If when you're later in life, and you and you're experiencing, you know, diabetes situation, and you're not in DKA, because that's the other thing, if you're in DKA, there's, they tend to like, you know, follow the dots. But if you're not, don't just automatically let them tell you, Oh, you're overweight and your type do and go down that road, you know, force them to at least do the peptides and all the tests that needs to be done to make sure that that they are because all that all that medicine that I took was for naught. And it was a lot of money, and a lot of time and probably did more damage to me, you know, no, not as much honeymoon period as I should have gotten maybe. So just stand up for yourself and make sure you educate yourself.

Scott Benner 1:21:56
Yeah. But do it in a way where you don't put people off?

Janet 1:22:00
Yeah, don't do it Janet's way. Try to find that nice, warm, fuzzy kind of way.

Unknown Speaker 1:22:07
You've been that way with

Scott Benner 1:22:08
me. Like, but I'm a guy and I'm direct. So you're you're okay with me. Yeah. Interesting. See how that works?

Unknown Speaker 1:22:16
I mean, yeah,

Scott Benner 1:22:18
I was just wondering, I like you to say it out loud, so that people can hear it. Yeah. That's unfortunate. How much of that part of your personality is while you're not in Mexico?

Janet 1:22:31
I would say a lot. I would say 95%.

Scott Benner 1:22:35
Janet, who is your own worst enemy?

Speaker 3 1:22:38
I think myself might be you. Yeah, it could be. So what I'm burning. You're learning. I am learning

Scott Benner 1:22:45
piano. We're running out of time here. We gotta get moving. I know. But so tell me something. What's your perfect scenario? Like for your living situation? Start there, like, where do you wish you are? Who do you wish was with you?

Janet 1:23:03
You know, I feel like I'm where I want to be at this point in time. If if my son were to move out of state, I would probably follow him. I don't want to live with him. But I'd like to live near him and his wife and you know, maybe potential future kids. I enjoy the relationship I have with my husband, where he comes and goes right now, because I think it gives me time to you know, take care of me more than worrying about other people. I want to I want to take care of Janet, now. So that I can be here in the future.

Unknown Speaker 1:23:32
Okay.

Scott Benner 1:23:34
All right. So so you like where you are, but you want to live near your son? Yeah. And your husband and your relationship? You like it the way it is? And the distance doesn't? You can afford to travel I guess is what I'm saying. Right? Somebody wants to go one way or the other. It's not a big burden for anybody.

Unknown Speaker 1:23:54
Correct? Yeah.

Janet 1:23:55
Yeah. Then we're both retired. And we're good.

Unknown Speaker 1:23:58
Yeah. As far as that. It's all very interesting.

Scott Benner 1:24:01
I appreciate you coming on and sharing all this with me. I really do.

Janet 1:24:04
Yeah. And then you know, one last thing I just want to say too, is you know, those people that are getting 65 positive and our experience like this just weird pain out of nowhere and this constant. You know, where you have these spasms and stuff, you know, go forward and try to find the answer because it could be stiff person, it could not be stiff person. It's very rare. But at least you know, don't give up like I did for so many years and just in just suffer.

Speaker 3 1:24:32
Yeah. So which doctor do you see for that again?

Janet 1:24:36
I see a doctor down in Kaiser and Nura a neuro muscular specialist.

Scott Benner 1:24:41
And would that doctor give you a medical marijuana card?

Janet 1:24:46
Oh yeah, cuz I just asked. I just asked him if it was possible for him to give me a letter to change. I have to bathtub, shower tub situations in the house that I'm in and I've kind of like tripped and fallen you know, like last With all this coldness, and so he gave me a letter to like, medically needed, you know, walk in shower. So I'm sure he would give me because I think he knows to like, I mean, I'm really weird about the valium situation so that I'm only going to do something that I think that I potentially need.

Scott Benner 1:25:19
Janet. Looks like you want the Department of Cannabis Control California cannabis.ca.gov. And then eligible medical conditions. One of them is persistent medical spasms. For example, spasms caused by Ms. I think what you have falls right into there. You fill out the application, gather your supporting documents, make an appointment with your county health department, go to your appointment. Wait for 35 days for your approval. Yep, that's it.

Janet 1:25:48
Yeah. Cuz it's definitely on the federal list of compassionate disability. So you can name this part of the podcast, you can potentially future pothead. Janet future.

Scott Benner 1:26:01
See, I think that's it though, is like that idea. Because of the time you were born in it, you'll become like, whatever a pothead is like somebody who's just constantly burned out and high and upset when I'm that's not what I'm talking about. I think you would, you would use this like you would, I don't know, sip on a sports drink to keep your blood sugar up while you were running. You know, like that kind of thing. Like just maintenance. Like a like a like a vitamin. Almost. If this happens, we'll send me a note, right?

Janet 1:26:30
Yeah, wait, I'll say I'm going to send you a note to and, and share with you my maiden name and you'll get a kick out.

Scott Benner 1:26:38
We can tell me after we shot the recording, but I want to You can't just ask her son for weed. You don't think that will just work? Oh, god. No,

Janet 1:26:45
my son is more square than me. Oh,

Unknown Speaker 1:26:49
yeah, I see. I see. I see. I see.

Scott Benner 1:26:51
The husband's got to have weed on the beach. No.

Janet 1:26:54
Well, yeah, I mean, it's plentiful down there. You can walk, I could probably walk through the neighborhood and get a high contact high.

Scott Benner 1:27:00
Well, there you go. Here's the least technical thing I'll ever say to a person. I think you got to chill out a little bit. I know right? Seems to be that that's my crochet group. You're not the only person I've talked to who decided to crochet for relaxation, but then couldn't follow the rules and meet all the knots tight. Like you're literally turning the crochet into yourself. You're like tighter tighter. It was bad. It was I don't want liquid to pass through this afghan.

Janet 1:27:36
It just looked horrendous. They were just like, okay, yeah, this is

Scott Benner 1:27:39
probably folded up on itself. It was so tight. Like God. All right. Well, John, I enjoyed talking to you. I appreciate this very much. Hold on a second for me. Okay. Okay. Okay.

A huge thanks to Janet for coming on the show today and sharing her story. And I'd like to thank Omni pod and Dexcom First Omni pod Omni pod.com/juicebox Go there, see if you can get a free trial. Learn more about dash or five. You know, get going with the best, the brightest, the greatest, the Omni pod after that dexcom.com/juicebox Thank you so much to Dexcom for being longtime sponsors of the Juicebox Podcast learn more and get started today at dexcom.com/juicebox. There are links in the show notes and links at juicebox podcast.com to Dexcom and Omnipod and all the sponsors

if you have type two or prediabetes that type two diabetes Pro Tip series from the Juicebox Podcast is exactly what you're looking for. Do you have a friend or a family member who is struggling to understand their type two and how to manage it? This series is for them. seven episodes to get you on track and up to speed. Episode 860 series intro 864 guilt and shame. Episode 869 medical team 874 fuelling plan, Episode 880 diabetes technology episode 85 GLP ones metformin and insulin, and an episode 889 We talk about movement. This episode is with me and Jenny Smith. Of course you know Jenny is a Certified diabetes Care and Education Specialist. She's a registered and licensed dietitian and Jenny has had type one diabetes for over 30 years. Too many people don't understand their type two diabetes, and this series aims to fix that. Share it with a friend or get started today.

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