#1158 Kelly Uses Afrezza

Kelly uses Afrezza, an inhaled insulin.

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Scott Benner 0:00
Hello friends and welcome to episode 1158 of the Juicebox Podcast.

Kelly is 54 years old she was diagnosed with type one diabetes at 25 back in 1994. Right out of college. Today, she's got a great story that includes using a Frezza the inhaled insulin, we're gonna hear all about it. 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 juice box at checkout. That's juice box 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. If you're a US resident who has type one diabetes, or is the caregiver of someone with type one, go to T one D exchange.org/juicebox. and complete the survey. That's all I need from you. T one D exchange.org/juicebox whole survey 10 minutes start to finish bing bang boom. They won't ask you one question you don't know the answer to. This is a test you're getting 100 on if you know what I mean. This episode of The Juicebox Podcast is sponsored by the ever since CGM. Ever since it's gonna let you break away from some of the CGM norms you may be accustomed to no more weekly or bi weekly hassles of sensor changes. Never again will you be able to accidentally bump your sensor off. You won't have to carry around CGM supplies and worrying about your adhesive lasting. Well that's the thing of the past ever since cgm.com/juicebox. Today's episode is sponsored by Medtronic diabetes, a company that's bringing together people who are redefining what it means to live with diabetes. Later in this episode, I'll be speaking with Mark, he was diagnosed with type one diabetes at 28. He's 47. Now he's going to tell you a little bit about his story. And then at the very end of the episode, you can hear my entire mini interview with Mark to hear more stories from the Medtronic champion community or to share your own story. Visit Medtronic diabetes.com/juice box and check out the Medtronic champion hashtag on social media. My

Kelly 2:37
name is Kelly. I'm 54 years old. I was diagnosed with type one diabetes, obviously, when I was 25, which was 1994. Okay,

Scott Benner 2:49
two years before I got married. I don't know why that's important. Well, because there's Kelly. Yeah, yes. It's because your name's Kelly, you were 2125 45? Were you in grad school or out of college or working?

Kelly 3:05
I was out of college. And ironically, when I went to college, I had a degree in nutrition. And it's a long story. I was originally doing engineering. And I decided that I wanted to maybe go into sales. And at that point, I thought, well, it could really be anything that I have a degree in. So nutrition seems interesting. You know, I I'm sure it's something that I can use one day, I really did not want to become a dietician. I did not want to work in a hospital, I did not want to tell people what they could and could not eat.

Scott Benner 3:41
Can I ask you why you got that degree? So I know,

Kelly 3:44
right? Because I was at a school that was very competitive. And when I decided to change my major, frankly, it was one of maybe three things I could change to Okay. And I thought well, you know, it's not the worst thing i I'm sure that I will benefit from this is what I thought. So I graduated from the program and started working. And I was working in the kind of more food service industry side of it was sort of a food science degree. It was food science and nutrition is what it was. And so I did that for a couple of years. And then I moved from the state that I was in to another state. And about a year after I moved, started having classic diabetes symptoms, which of course I had no idea what they were. I lost a lot of weight, I'm guessing about 20 pounds, kind of took about four months from when I started noticing something was up until I was diagnosed. And so during that time, really, really thirsty. Really really hungry eating and drinking like crazy still losing weight and you know, part of you is like awesome and And the other part knows something's wrong. I was married at the time to man who became my ex husband, but he was,

Scott Benner 5:08
how do you do that?

Kelly 5:09
You're gonna understand why in a minute. I was like, something was wrong with me. And he kept telling me I was crazy. You know, there's nothing wrong with you. I don't know, he just he was he was not supportive. Okay. Back in 1994, there was no internet. So I didn't have access to any information, no diabetes, and my family learned a little tiny bit about it in my nutrition degree, which you would think you would know more. But, but I didn't?

Scott Benner 5:38
Well, I wouldn't think you would know more. Because I imagine when you switch that degree, I see your parents just crying at home. While you're explained to them like, well, it's just one of the three options. I can switch to their public. Oh, God, our money. Goes there goes. I would cry be like, Oh, come home. You're confused. And it's costing me money. I need you to get back here. Right. Yeah, exactly.

Kelly 6:01
Okay, so thirsty, hungry? Losing weight, really, really dry mouth. I don't know if that goes along with a thirst. I don't know what that was. But at the time, I was a runner. And I was running. And I would always have to take a candy or a piece of gum or something to chew or while I was running, or else I was like, you know,

Scott Benner 6:25
just like that, that like really dry stuff together. Yeah,

Kelly 6:29
right. really dry. Okay, so I told you, I had just moved to a new state. And you know, I'm a healthy 25 year old or so I think actually, I was 24. At that time. I don't have a doctor, I don't have a primary care doctor. I, you know, frankly, I don't think I need one. So I'm trying to figure out a doctor to go to and symptoms keep getting worse. And what finally put me over the edge is yeast infection. Never had them prior and got one and it was like, Oh, my word what on earth? So that sent me to the doctor. Yeah,

Scott Benner 7:01
I hear that a lot, by the way. From women. Yeah, diagnosis. I

Kelly 7:05
mean, and it's such a bummer because you go through the whole rigmarole of all the stuff you have to use. And it it may be went away for like a day and came right back. Right back the vengeance. So that is what ultimately forced me because I just, that was not fun. I go to a nurse practitioner and I get in there. And I'm like, Okay, this is all the things that are wrong with me. I've lost 20 pounds, I am thirsty all the time. I'm eating like crazy and losing weight. I don't know why I have this recurrent yeast infection, you know, keeps coming back and she sits me down, reaches across the table holds my hand and says you're 25 you're stressed your body is changing. And I was like, No, I think it's I don't think I'm terribly stressed.

Scott Benner 7:56
Had I not had a daughter? I wouldn't realize how dismissively women get treated around their health. Like by by men and women who are doctors. By the way, it doesn't even matter which one it's the prevalent idea that if a girl's having a problem, it'll just pass is like medical folklore. What they want to say is we don't know. But what they go, is it most of the people we see they stopped complaining about that eventually.

Kelly 8:22
Right? Thanks. Yeah, yeah. Well, and to make it even worse, she had taken a urine sample and was testing me for pregnancy. And I said, and so I can't remember now all the details, but I remember being at that meeting and saying something about diabetes, I think I had, I don't know what gone somewhere, read something found, you know, found something. So the urine cup is sitting there, like, right on the counter right next to us. Yeah. And I said, you know, is it possible this could be diabetes? And she said, Oh, no, you don't want and I was like, well, could we test for it? Because I mean, I didn't know what the test was anything like that. So I said, can we test for it? And she said, that is a really expensive test. And you know, here I am. I'm 25 I did not have a job at that time with medical stuff. And I'm thinking oh, my gosh, okay. Yeah. So you know, she thinks I'm crazy too. Clearly. I'm, I'm likely crazy here. No, I knew I wasn't crazy. But when

Scott Benner 9:23
everybody tells you, it's probably not that and then hit you with the money thing when you're younger, too. Yeah, but we can't spend that money. Yeah. How many times have you thought it's time to change my CGM? I just changed it. And then you look and realize, Oh, my God, it's been 14 days already a week, week and a half. Feels like I just did this. Well, you'll never feel like that with the Eversense CGM, because ever since is the only long term CGM with six months of real time glucose readings, giving you more convenience, confidence and flexibility. So if you're one of the Those people who has that thought that I just did this, didn't I why we're gonna have to do this again right now, if you don't like that feeling, give ever sense a try. Because we've ever since you'll replace the sensor just once every six months via a simple in office visit ever since cgm.com/juicebox. To learn more and get started today, would you like to take a break, take a shower you can with ever since without wasting a sensor, don't want anybody to know for your big day, take it off. No one has to know have your sensor has been failing before 10 or 14 days. That won't happen with ever since. Have you ever had a sensor get torn off while you're pulling off your shirt? That won't happen with ever since. So no sensor to get knocked off. It's as discreet as you want it to be. It's incredibly accurate. And you only have to change it once every six months. Ever since cgm.com/juicebox.

Kelly 10:57
Yeah, so it kept going on. I don't know when that was that might have been like the beginning of May. So I continue and it's just this vicious cycle, I started getting really bad leg cramps. So I would wake up in the night and my calves were just like, locked. And it would hurt the whole next day. That was another symptom that I had. But I went home back to where you know, I'm originally from to visit my sister. And she picked me up at the airport. And she took one look at me and she was like, Okay, what is going on with you? Are you you know, having an eating disorder. You know what's happening because you look like a skeleton. So you look

Scott Benner 11:38
like eating disorder or drugs to your sister when she saw you immediately. Yeah.

Kelly 11:42
And I and you know, when you're looking at yourself, I knew I had lost weight, but I didn't see it because it was gradual. And she was like, dude, something is up with you, you know this, this is not okay. And so I told her at that time, everything that had happened. And I mentioned diabetes, again, I don't know, where I was even knowing that I might have this thing. And I obviously didn't know how serious it was where I would have taken myself to the hospital. But so she happened to have a friend that was a diabetes educator and the friend said meet me at my office. I think it was a Saturday or something. So we went she you know, tested my blood sugar with a meter in her office. And I think it was 497 479 something like that. Yeah, right off. So right then in there, we were like, oh, okay, this is what this is. So again, I'm out of town. I so that was the maybe the second day I got there. So it was probably Saturday. I wasn't returning home until Monday. So I call my ex husband

Scott Benner 12:44
still waiting to find out how we accomplish this but really like hysterical

Kelly 12:48
crying upset like I don't know what this means. I don't know if we can have kids. I remember this conversation and he is like on the other line going. Oh, and your sister told you this? Yeah, your your wacko sister told you you have diabetes is basically how he did it. And then he promptly got on a plane and went for a guy's weekend with his friends and was gone. So I fly back home, I arrange for a doctor's appointment with a really great just primary doctor that a friend of mine told me about. I showed up to his office fasting. I'm like, I think I have type one diabetes, can you do the bloodwork? It's sort of like whoa. So I told him the whole story. He believed me. He said, Well, you're gonna have to fast and come back and I'm like, nope, already fasting. Let's do this thing. I had to fasting lab draws done two days consecutively and both were around 250 fasting. Okay, it was an interesting thing for me. You know, I don't know, it seems like when kids are diagnosed, it seems like it's a much quicker, you know, from when symptoms kind of start until it's, yeah, very, very serious. And for me, I think it probably started in February. And then my actual diagnosis was June 3.

Scott Benner 14:05
Yeah, a lot of people can have I mean, like a slow onset. Yeah, they'll call it Lada or one and a half or something like that. But it's not uncommon for adults it's it's also not that uncommon for kids to have slower onset to but you probably just don't see them because they're young and you just don't think anything of it then all of a sudden they're gone and then boom, you're at the doctor right? So

Kelly 14:27
and at that time I'm sure that agencies were a thing but I don't remember ever having one done or anyone ever telling me this was your agency it would it would say well your glucose you know on today's test was this but I've looked back and I cuz I have the ones still where I was 250 something Yeah. And there's no a onesie on there. So I never knew

Scott Benner 14:53
what that was. Are you seeing an endo? Are we just seeing a general practitioner with general practitioner might not have fun Even thought to test for it. I mean, it definitely existed. So they just didn't get after it. How long after the boy's weekend? Did you get rid of that guy? I have a number in my head. I think you made it two more years.

Kelly 15:16
Ah, I think it was three.

Scott Benner 15:19
Very close. I appreciate this. Yeah,

Kelly 15:21
I think it was. Yeah, I think it was three. Yeah. And even once, I don't know, even when I know that the very first time I gave myself an injection, I was home alone, because he was still out of town. And the injection didn't happen for several days, because I had to do to, you know, two consecutive days. And then that after the second day, he sent me to an endo to learn you know how to give shots. All they taught me and it was NPH. Only. Okay, no, NPH twice a day. That's how it started for me. 30 years

Scott Benner 16:00
about 30 years ago. Yeah, that makes sense. Hey, I'm gonna get past this. But was the ex husband very handsome, trying to figure out how we got

Kelly 16:10
here's the truth about the ex husband, I had a less than desirable childhood and parents, I gotcha. Okay. Amazing parents, I adored them, absolutely adored them. And I think I tolerated him so that I could have them. That's

Scott Benner 16:26
a episode of New Girl, if you've ever seen it. I really asked because we find ourselves looking at each other today, which I don't always do with people. But you're an attractive woman. I imagine you were an attractive younger person. I'm trying to imagine what like, like, why did you in your early 20s. With options, I'm assuming, like, stick with that is what I was trying to figure out. That's all. That's all?

Kelly 16:51
I think. Yeah. That Well, and that's the best that I can tell you. He was not bad looking. So so there's that, but you were definitely not compatible. And I knew he was really, really selfish, you know, just and maybe it was because he was young guy. I mean, he was a good guy. There was nothing about him that in terms of what I knew about, like, bad guys to be, he was not that person. But he was not. I don't know, he just, he was selfish, you're very, most

Scott Benner 17:23
of us are like that in our 20s. Like, so you have to have something that Bond's you together so that you can wait on us to get into our 30s. So that you can go oh, I can say he's going to turn to a reasonable person eventually. But you didn't have that, like, you don't have kids. And then you had a need, and he wasn't there for it. So that's where you don't get the opportunity to stick to each other, then it's interesting, isn't it?

Kelly 17:47
I know. And back in those days, I really don't remember him being, you know, interested involved in any way, just any of those things. And then we moved, we obviously split up, I got a job and met my current husband at that job. Yeah. And the difference was, and you know, I already I already had diabetes when I met my current husband. And so he knew a little bit about it just from watching me operate at work for a year before we started dating. And but he knew the first thing he wanted to do was learn every single thing he could, right. I remember, you know, letting him do my shots. I remember him wanting to give himself a shot. So I loaded up a syringe with one unit of Lantis. That was like, Here you go. And he gave himself an injection. And he just he wanted to understand it. And he wanted to help me. And he has been just awesome. So awesome.

Scott Benner 18:46
It's great that you found that I listen, I look at my own life. And I tell you, my wife is articulate and smart and pretty. And if we didn't have kids in our 20s, there's no way she wouldn't have left me. I mean, honestly, I think she held on to the beginning because she was like, if I have another kid, I'd like it to look the same as the first one. And he's my option for that. And then I think as I turned into a reasonable person as I got older, she was like, yeah, she had the energy to bail on me at that point anyway. But like, there's that thing where you kind of bond yourself together, everything's and, and just the other day. I was dropping her at the airport. And we were talking about traveling, I just traveled and she was getting ready to travel. And she said, Would you rather fly alone or with somebody? And I said, Oh, obviously alone, unless it was with you. And she's like, why? And I said I don't know because you can't really talk on a plane anyway. And so being with somebody is kind of ridiculous. Like you can't really have a conversation. What am I getting when you're around? I just feel better. Like there's good energy when you're with me. And then she started going through like other people like well, what would you would you like to travel with this person? She's naming people in our lives and I'm like, No, that all sounds really irritating to me. And she goes, Why irritating and I'm like, I don't know. I just I you're irritated when you bring this up. Like she was mentioning women specifically, like, like, and I'm like, she's like, they're not irritating people. And like, I know, I'm like you don't understand. I'm like, I could do it with you. No problem. That's lovely. I don't want to do it with other people. And when we dug into it, I said, it's because you know, everyone's got something like, extra assisity why that word just did not come out, right. But people are eccentric and weird ways. And it's bothersome. And I'm like, You're a pain in the ass too. And I'm pointing at her. And I'm like, as am I, I'm like, but with you. I can picture you in my head when we were 20 and 25, and 30 and 35 and 40. And I know when you've been sick and happy and unwell. Like I know your life, we have a history together. I'm like, There's nothing crazy you can do that I'm bothered by, because I love our time together, as well as you. And she's so Irish. She barely blinked an eye. Like you would think like most women would be like, Oh my God, you're amazing. My wife was just like, hey, I got it. And then I knew it touched her. Because when I got her bag out of the car and gave her a kiss, she said, I love you. And I was like, Oh my God. She was really like, you have no idea how Irish she is, like so. So like, I was like, she was really touched by that thing. And I said in the car, like, I need to do this, or I mean, I was so pissed. She was getting on a plane. No, it was like, because this is gonna wear off by the time she gets to where she is.

Kelly 21:22
Absolutely, yeah, you need to do that when she comes back.

Scott Benner 21:25
When will that opportunity pop up again, for us to have that conversation. That's it. That was my once in like five year chance and three nice days in a row, and now it's gone. But anyway, right now we're going to hear from a member of the Medtronic champion community. This episode of The Juicebox Podcast is sponsored by Medtronic diabetes. And this is Mark.

David 21:45
I use injections for about six months. And then my endocrinologist at a navy recommended a pump. How long

Scott Benner 21:51
had you been in the Navy? Eight years up to that point? I've interviewed a number of people who have been diagnosed during service and most of the time they're discharged. What happened to you?

David 22:00
I was medically discharged. Yeah, six months after my diagnosis. Was

Scott Benner 22:05
it your goal to stay in the Navy for your whole life? Your career was?

David 22:08
Yeah, yeah. In fact, I think a few months before my diagnosis, my wife and I had that discussion about, you know, staying in for the long term. And, you know, we made the decision, despite all the hardships and time away from home, that was what we loved the

Scott Benner 22:22
most. Was the Navy, like a lifetime goal of yours? lifetime goal.

David 22:26
I mean, as my earliest childhood memories, were flying, being a fighter pilot, how

Scott Benner 22:31
did your diagnosis impact your lifelong dream?

David 22:34
It was devastating. Everything I had done in life, everything I'd worked up to up to that point was just taken away in an instant, I was not prepared for that at all. What does your support system look like? friends, your family caregivers, you know, for me to Medtronic, champions, community, you know, all those resources that are out there to help guide away but then help keep abreast on you know, the new things that are coming down the pipe, and to give you hope for eventually, that we can find a cure, stick

Scott Benner 22:59
around at the end of this episode to hear my entire conversation with Mark. And you can hear more stories from Medtronic champions, and share your own story at Medtronic diabetes.com/juicebox. It's very interesting to me, because I hear so many people talk about how concerned they are that they're not going to find somebody who will like care about their diabetes and really understand it and be involved in it and look at you you had to go through some like, hurdles to get to that. But you have that. So that's really great. Yeah, yeah.

Kelly 23:32
Yeah.

Scott Benner 23:33
Well, well, that's excellent. All right. I want to leap ahead a little bit for you. Because do you use a president now? I do. Am I saying it correctly?

Kelly 23:41
You are okay. Okay.

Scott Benner 23:44
So are you like, why don't you tell me about your management, like, where it started, how it progressed through your life and how you got to where you are now.

Kelly 23:51
Okay, try to be quick. So in 94 Put me on mph twice a day, which was a nightmare. I basically walked around with food with a little brown bag of food all the time, because I think NPH spikes every three hours. Does that sound right to you? Oh

Scott Benner 24:08
my gosh, that's it's a little bit. Yeah, not I don't know. I've never used it. Yeah.

Kelly 24:12
So basically, you would get up and you know, you wanted to take your shot, I think every 12 hours. And so I think my dose was 10 units in the morning and five units at night. Okay, now I can't remember if it was bedtime for five units, or if it was dinnertime, I don't remember anyway. So I did that my sister who was like CFO totally not health related at all came across a diabetes article in a newspaper. And they were talking about intensive insulin therapy. And so that was regular using regular with a long acting to sort of count carbs and I don't even know if they really counted carbs at that time, but it was talking about using regular insulin with meals. And I was like, Oh my gosh, yes. So I go back to this window that I had started out with. And I'm like, hey, I want to do this. And the guy goes, Oh, no, no, you don't want to do that. That's intensive. That's harder. No, no, no, no. And I was like, No, you don't understand. I am a 25 year old woman I am, you know, working full time and living life and whatever. And feeding insulin all day long is a job. I don't want this is ridiculous. This is no way to live. So he said no. So I went right on down to the local Rite Aid, or whatever it was, and bought myself a bottle of regular because you did not need a prescription. And I started it myself. Now. I think I was still using NPH. And I think I decreased that dose. I don't remember exactly how I did it. But I did. Got a new window went to him. He's like, your management is amazing. How do you do this? And like, did it by myself, know what it was all figured it out? I don't know. So did that. Then I went to ultra Lin Tei as a background, insulin MDI, then, so I did that forever. In 2003 2002, I, my husband, and I very carefully planned our pregnancy, very carefully had found the perfect Doctor Who knew my management was good, wasn't going to ship me off to a high risk OB group, I was so excited, get halfway through my pregnancy. And she calls me up and says bad news, the group that I work with, or not comfortable having, you know, someone with type one diabetes, and because they kind of, you know, rotate, who's on call, and that kind of thing. They did ship me off to the high risk group, which was, oh my gosh, disastrous, but anyway, disastrous, because they, we had an appointment with them. And it was sort of halfway through my pregnancy. And they sat us down and said, basically told us, we should have never done this, like, your baby is going to have major cardiac defects. Just all kinds of horror stories, stuff that you hear about diabetes, I walked out of there, seriously, the worst medical appointment I've ever, ever had in my life. And my husband and I went home, and it was sort of like, oh, my gosh, what have we done? Like, you know, she told us it was fine. And I think my agency, so I never knew what it was from the very beginning. But it was always in the sixes once I got once I started having it done, I guess. So that was, you know, great at the time. And I think I was even in the fives when I was pregnant with my daughter, but so I get there. We're already halfway through the pregnancy. They tell us all these terrible things are going to happen. And they say, oh, and you're going on the pump. I was like, wait, what? Why? Why do I need to go on a pump? Oh, well, that's how we do it here. And I was like, okay, you know what, I've had just about enough of you people. Okay, guess what? I'm not going on the pump. How about that? You can't I want to have some power at some point. And this is where I'm gonna put my foot down. But you're

Scott Benner 28:02
four or five months into the pregnancy already. And things are things are fine. Yeah. Okay. And I think I understood what you're saying or even though you don't think you were tracking you're a one sees at that point. In the future when you were tracking them managing the same exact way you were then you feel like you had you have a one season the sexes. Well,

Kelly 28:19
just in the maybe first like two or three years of my diabetes. So probably by the time the 2000s rolled around. I definitely had a onesies being drawn. But in the very beginning, I did I got

Scott Benner 28:34
no no, yeah, so you felt like you were doing okay. And you're testing and your blood sugar's aren't crazy and all that stuff.

Kelly 28:40
I mean, you know, you have crazy blood sugars, but generally speaking, you know, I was I was testing a ton, I was really, really on it. You know, I was doing the best I could do with the tools I had at the time. Okay. I wasn't ninja by any stretch of the imagination. But you know, I was having a one season the low sixes and it wasn't because I was 400. And then 30. And then you know, right.

Scott Benner 29:04
So they're trying to push you on a pump, which would have put you on a faster acting insulin got you off of what you were doing. You resist it. Did you stay with what you were doing? I did. Did you have to leave the practice for that? No, no. Oh, they just gave up that easy.

Kelly 29:17
Yeah. They were like, okay, Kelly, this

Scott Benner 29:20
endlessly fascinates me. When people say this has to happen, and then you go, No, and they go, okay. I swear to every time someone tells me that sort of like, what is happening that's actually having to happen, like, are we just just people's if this is what we do, and you go, I don't do that. And they go, Oh, all right. Well, that's not important. How the hell was it important? And now it's not important. Five seconds later. I don't understand that. It's either is or it isn't. So, yeah, I think that's just an important lesson for people to hear for when they get pushed in certain directions. Like ask why, you know, I'm sorry, but go ahead. You push back. Okay. Well, what

Kelly 29:56
I was gonna say is, you know, as an adult getting diagnosed with type When so I was never hospitalized, you know, they said, Oh, yeah, you've got type one, we're gonna send you for education. And you know, that's going to be that I think I had two days of education, then. And then nothing. I mean, literally, you just you go to the doctor, they look at your numbers. Okay, you know, here's your prescription, what I mean, it was just, there was nothing, I, it was a really lonely feeling, honestly, because I knew no one with diabetes. And you know, when kids get it, it's like, oh, my gosh, there's JDRF. And there's, you know, hospital stay for four or five days, whatever the whole family is involved. I mean, my friends and family were, it was, it was as if nothing had happened to me, really. And you're just kind of out there. You're like this little island. And you know, you don't really know, by the way, I can't remember now what it was. But you and Jenny, were going through diabetes myths. And I'm the one who my mom said I must have gotten diabetes, because I ate too much sugar as that

Scott Benner 30:58
was you the chant that in me, I appreciate that. We had a lot of fun making that series. Actually, I know, it's not completely up yet. There's still more to post, but we're done recording it. It was sometimes really frustrating. Like, Jenny so sweet that it might sound put on, but when she's upset, like she's really, like, mortified when things like that happen, you know, but Oh, that's nice. You just send something in and nice of your mom to say.

Kelly 31:25
I mean, I have two amazing sisters. And they we traveled together at least once a year. And so you know, we stay in the same room overnight, and they get it as best someone can that doesn't live with it stuff. But but not my mom. She has no, she just doesn't understand. And I honestly I'm like, I'm so thankful that I got this as an adult and not as a child, because I'm not sure she could have handled it. Oh,

Scott Benner 31:49
I see. Maybe you'd have been okay, but Oh, yeah. husband's parents.

Kelly 31:56
Very fortunate to have gotten this as a 25 year old, let me feel

Scott Benner 31:59
like you're, you're a classy person, and you're not going to trash your parents. But I feel like there's a whole story there about your parents. So we don't need to go that way. But I understand what you're saying. Yeah. So once you have your daughter, how many kids do you have? By the way?

Kelly 32:12
I have two. Okay.

Scott Benner 32:13
So once you have your daughter, she came out there was a foot in her head, I imagine like growing out of her.

Kelly 32:17
Absolutely perfect. Oh, how about that? Yeah. I thought and so part of the part of the story. So when I was pregnant, and they said, okay, so sorry, let me back up. As an adult, no one cares. No one cares what you're eating, you know what you're doing whatever. Well, all of a sudden, I'm pregnant. And this new OB group is like, Oh, we are going to dictate every second of every day for you. And so I think part of that, for me was like, why no one has ever cared before. Why in the world? Do I need your help? Now you think, because I'm pregnant, my brain shut down? Or why are we? Why are we having this conversation? So that was hard for me. Because I was not used to anyone trying to help trying to give me information, you know, certainly trying to tell me what to do. So I really, really resisted. And so anyway, the pregnancy was fine. She was eight pounds, five ounces. i All of my siblings, and I were eight pound baby. So it seemed, you know, that was? Yeah, that would be expected. And then when I got pregnant, the second time with my son, both pregnancies, super planned, and you know, trying to be in best management possible. I got approached again with Hey, would you like to go on a pump. And by that point in my life, I had a toddler, I was pregnant again, I was starting to not remember, you know, when you have diabetes, your diabetes is really priority one until you have a baby. Right? And then it's priority two, or three lucky. You know, and I would never, ever, ever, ever tell a person with diabetes, you know, you shouldn't have kids or don't have kids. I would never say that. But the reality of the situation is your diabetes takes a backseat to your baby. Period. It just does. And if someone else tells you it doesn't, I'd like to talk to him because I don't think that's true. But anyway, so they said, you know, how would you like to find a pump? And I was like, You know what, I think that is a great idea. Because I couldn't tell you if I did my shot this morning or not. You know, it was like, Yeah, I did it because I needed the history. I needed the memory. Oh, I

Scott Benner 34:27
see. Yeah, it wasn't about the automation or anything. You just were looking for something to remember what you had done. So you could go back and look.

Kelly 34:34
Yes, yeah. make my life easier. So I did it. And I have to tell you that gosh, within two or three hours of wearing that thing, I was like, Why didn't I? So that was 2005. So because because 11 years MDA

Scott Benner 34:50
Yeah, but switching in the middle of a pregnancy because some new doctor who just were forced onto tells you to it's not that wasn't gonna work one way or the other. Yeah, so But yeah, it is something I actually aren't. And I mentioned it last time I interviewed art. And I said to her, Do you know how like, much these algorithms take off your back? You know, and she's like, Hey, I know she goes, but it's still my reality, like, um, you know, it's fine. But I watch her some days. Like, I look at our 24 hour graph, people ask me all the time, like, when's the last time you like, how often do you look at Arden's blood sugar? And I have to be honest, I looked at it this morning. And it was like the first time I looked at it in two days, so she's away at college. But I mean, this is a 24 hour graph. I don't know if you see that. Yeah, those last those lines are between 70 and 120. Yeah. And she's in college. And so, you know, the amount of effort she put in yesterday into her diabetes was probably minimal. At best. It's so small, that just a slight change, sometimes makes her go like, Oh, I can't believe I have to do this. You know, not now. I'm busy. And I'm like, like, I sent her a text. And I'm like, Arden, you know, I just need you to like, do this. Now. It's, it's getting away from you. I can't, I'm too busy. And I'm like, imagine if, like, she's 19. She's a college. What if it was on her to inject? Every single time she did something, you'd miss things, you'd be too busy, and you'd miss them. And it's exactly what you're explaining. So what was your first pump?

Kelly 36:30
Medtronic? Yeah. And what kind of insulin is I was pregnant, it was the biggest one that holds the most insulin at that time. And I can't remember what that was like a seven or something. Okay. And then, and then my second pump four years later was another Medtronic, but it was the five. I'm saying Fine. It was like 510 or,

Scott Benner 36:50
but that was actually you going from regular and mph to best acting for the first time?

Kelly 36:55
No. So I did mph just for a little while. And then I did Ultra Lin Tae

Scott Benner 37:02
I'm sorry. Right. So you went from that to a pump?

Kelly 37:06
And then Lantis. Okay, I think yeah. And then Lantis. And then I went to a pump.

Scott Benner 37:12
Okay, in the pump. What were you using? Do

Kelly 37:13
you remember? Probably human log.

Scott Benner 37:16
Okay, that makes sense. And now, you go along, pumping for a long time. It sounds like you're doing well. What makes you switch to a president? How, yeah, and how does it work into your life? Okay.

Kelly 37:29
I did Medtronic pumps for eight years. And then a friend of mine was diagnosed with diabetes, and she used Omni pod. And so then I switched to Omni pod. Loved on the pod. Oh, my goodness, after wearing a tube pump and then having that pump. It was like, oh, never. Never, ever, ever do a tube pump again. But never say never. Because there's more to that story. So I was on Dexcom. And you know, when the original inhaled insulin came out, I think I don't remember what it was called. But it looks like a big huge flashlight.

Scott Benner 38:04
I don't remember that one. Okay, it was gigantic,

Kelly 38:07
like picture pulling out a flashlight that you shove, you know, two D batteries into, you know, like you're going camping. And that was how that one delivered. So you pulled out this big huge, you know, Bong looking thing. Oh, yeah. And had to inhale that. And I was like, Oh, my goodness, what are we doing million years, but I do that

Scott Benner 38:28
you have this big, like LTO of your fit? Yeah, that's probably not a great look. Right? Right.

Kelly 38:34
Good luck for anyone at a restaurant, or at all. So that was never an option. But I have I'm a part of a local group where I am now and about monthly, they would kind of have get togethers and this one in particular was the Frezza sales rep was coming with a type one diabetic person that used a Frezza. And I was like, Oh my gosh, I have to go see this all the time. I didn't really. I didn't even really know what a Frezza was entirely what the mechanism looked like. I knew nothing but I get there. I meet this guy. His name is Anthony. He's fabulous. You should absolutely have him on the podcast one day he pulls out his XCOM and he shows me this graph and it looks better than Arden's and I'm like, Okay, this is a joke. You do not have type one diabetes. This is not your graph. Who is wearing?

Scott Benner 39:24
We are being scammed. The Grad Dex comes on a lady outside the room. She does not have diabetes. She does not even know why she's here. She paid $20 to sit there with the CGM. Yeah,

Kelly 39:34
I am not kidding. That's exactly what I thought. And he's like, no, no, I've had diabetes, you know, my whole life. But here's this stuff. And here's how this works. And it's fantastic. So I was pretty sold on it after hearing him being at the event seen it so the next day, ironically, I'm heading towards to go visit my sister's for one of our trips and he is on the same airplane as me. So we have more time to sit and talk and I'm like Uh, oh my God, I want to do this, I absolutely want to do this. Now I started Dex calm. In 2016, I was just kind of a late bloomer to everything, I didn't want one. And I didn't think I needed one. And then all of a sudden, I was having, you know, lows that wouldn't really feel them coming on until I was, you know, in the 40s, kind of two arrows down, and then it was troublesome. So I got Dexcom in 2016. And it was so frustrating to me, because I wasn't Pre-Bolus Saying no one ever told me to Pre-Bolus ever, in my whole life, never, ever, ever, and it just didn't occur to me to do it. I just thought that, you know, you take your insulin, you eat, you go up to 250, and you come back down. And that's, you know, probably what I did most of the time. So when I got the Dexcom and saw that I was like, Oh my gosh, this, you know, I don't think I even want to know this, I think I want to not wear this and not see this. So I thought, okay, you know, this other thing looks so much better. So came back from my trip, got in touch with my doctor, got the Frezza ordered. And then Anthony and my doctor had never, never prescribed it before. So I was the first person knew nothing about it. So she's like, here you go, you know, good luck, let me know. Yeah,

Scott Benner 41:14
if you don't die, I'd love to hear how this goes.

Kelly 41:19
So he, oh, I mean, he, I just I love Anthony. And it's funny, because I feel like he just changed my life in this just way that, you know, it's like, you just don't know what you did for me, you know, opening the door to this, you know, reality of insulin for me. So anyway, he he and I spent probably a month and I'm not exaggerating, on the phone texting multiple times a day, every day for a month because a Frezza is different than the injected insulin. And if you just start taking it, like you take your insulin, it doesn't work. It doesn't work the same way. So you have to learn how to use it. And you have to forget how you used to do it, right. So a Frezza is like, I'm going to eat right now. And depending on what I'm going to eat, I either need to take some right now, or I need to wait a little bit because as soon as I take it, it's going to work right now. And so I wouldn't do that.

Scott Benner 42:24
So your Pre-Bolus in your A Frezza. At first Well,

Kelly 42:27
I mean, I would Pre-Bolus at first and then you know, it's very quickly in and out. So you take it and I mean, it depends on and for me, it's very activity driven. So if I'm moving around, if I'm exercising, it doubles up its effectiveness, just like the other insolence do. But if I'm not moving around much, it doesn't do a whole lot. So you have to there's just a lot of things that you have to learn about it. Okay, whenever I'm talking to people about a Frezza, I feel like if they had been given the option from day one, okay, there's two different, you know, methods of managing insulin, you can use this stuff that you have to inject, you need to take it before you eat, you know, yada yadi these are all the things that you have to do with it. And this is how it works. You can do that. Or you can inhale the insulin, and it works real time. It works right now. And you take one shot a day of a very stable long acting insulin, and then you just take the Frezza as you're watching your blood sugar, okay, and it's like, I can't imagine that anyone would choose, like, the liquid insolence.

Scott Benner 43:40
So you're like shooting like, like a Joseba? Something like that. Yeah. Okay.

Kelly 43:43
Yes. So I use Joseba. And one of the things that was just so kind of life changing for me when I started this management was one of my biggest issues was exercise. So I'm pretty sensitive to insulin. I don't use a whole lot I never have except when I was pregnant, but I take 12 units of to receive every day and that's kind of the dose that works for me that you know, keeps me stable. And then when I exercise so I think what a lot of people don't understand is Basil. True basil insulins Don't peek. So there's never a activity component there. You know what I mean? Like if you do your 12 units of true Seba and go run three miles, it's not going to double up on you and act like 24 units of trustee but these new

Scott Benner 44:32
modern Basal insulins are much more stable they cover like get better Lantis love Amir that stuff would like kind of burn hot at some points and and then go away. Yeah,

Kelly 44:43
right but your Siva doesn't so for me, you know a person who I tend to not like I'm a fitness fanatic or anything but I like to walk I like to do things and it isn't typically pre planned. So I would always find myself like okay, I want to go for a walk now or better. We're gonna do Spock's with me, or I better bring blah, blah with me. Because, you know, sure enough, as soon as I start walking, my blood sugar is gonna drop from this fast acting Basal insulin in my pump. Yeah. And it was always a fight like that. And it was just so frustrating to have to always worry about that have to Oh, you know what I mean? And so we use a Frezza I don't have that issue,

Scott Benner 45:22
even being a person who watches somebody use an algorithm now. Even that's starting to seem foreign to me, the idea of being on a pump that is just delivering a Basal insulin constantly, like, like, dumb pump, I guess you would call it but, but even that's starting to feel very old school to me. You know, like, seriously, like the idea of like, wow, like, it doesn't know that you're getting lower and take away your basil or like, what is wrong? Why would it not do that? Yeah. I mean, to me, that seems like, I mean, looking at control like you on the pod five, Medtronic is putting out a new one coming up soon, like all that stuff, like looking at those things. My expectation is that in the next couple of years, if you go on a pump, that's what you're getting, like, no one's gonna put you on a pump anymore. That doesn't make decisions like that. I can't see that happening, like much longer, you know, unless your insurance isn't going to cover a CGM. I guess that that would be the caveat there. But just the way they work is astonishing. And then and what you're describing here is you're putting in baselines, it's not enough to make you low. So you're not going to get low from your basil ever. So basically, let me see if I understand this. Okay, you go to eat. And if you're going to have something like maybe that's like simple sugary, like you're going to have, I don't know, like chicken with like some sauce on it, you might need to put the president pretty quickly because you the sugar from the sauce is going to hit you pretty quick. But if it was a very low carb thing, and you were going to catch a rise later, maybe from protein or fat, you might sit on it till you start seeing the rise and then put it in. Is that right? So what do you have like a very low threshold set on your CGM. And when it beeps? It's time to go. Exactly.

Kelly 47:07
Yeah, so I'll keep my CGM set at 70 and 130. And so and you know, most of the time, I probably ride higher than you would, then you would like,

Scott Benner 47:18
I don't care. Yeah.

Kelly 47:22
I've heard you say a million times, like, if you can be stable at 130. You can be stable at 120. You can be stable at 175, whatever. And you can and I don't disagree with that. But for whatever reason, I think I rent tend to run around 120 Most of the time, okay. And it just, I don't know why. And when I see 120, I don't think Oh, I better lower that. I look at it and go okay, that's fine. I also look at 90 and go okay, that's fine. Can

Scott Benner 47:51
I say that? When I see a 120? That's super stable. My first thought is not like, oh, my gosh, health. My first thought is, oh, the site's not working. Right? Yeah. Because the way I have the settings set stability should happen lower than this. So that's what my first thought is now is more about the delivery of the insulin like oh, 120 super stable, something's going on, like this site, on its way out, or this pumps old or something like that. If I see that higher 141 50 I'm like, change the pump, like get it off and change it. But I think people would be surprised that I don't look at a 120 and think, oh my god, she's dying. Like I don't, that doesn't strike me that way. So well, I

Kelly 48:33
look at it. And I'm like, oh, Scott would be so upset right now. But I'm fine with it.

Scott Benner 48:39
It's interesting to hear you say my words back to me is interesting, because I hear what you feel. But I know what I meant. And they're not exactly the same. So when I say like, if you can be stable at 150, you can be saved about 120 you can be saved 120 You could be stable at 80. That's to me, I'm trying to share the idea of optimism. And that that's a possibility for you. I don't have any thoughts about where people want to keep their blood sugar. Like I just if your blood sugar is always 150 and you wish it was always 120 I don't want you to just think like, well, that's not possible. And so like that statement for me, like from my heart, like I know what I mean. I don't know, like, I can't control how people hear me, I guess. But what I mean by that is, hey, you know, if your settings are right, and you know how to use insulin, you can create that stability anywhere you want. Like, that's all I'm trying to say. I don't know. But anyway, it sounds like generally speaking, you told me the way I met. But yeah, but I wouldn't be upset if your blood sugar was.

Kelly 49:46
Well, so I keep it at 7130 and I if it is kind of a complicated meal that I'm not entirely sure how it's going to work. I will. I will wait and I'll kind of keep an eye I on it. And I mean, maybe that's a little labor intensive. I don't know, I have it on my watch. It's just a quick glance down, you know, am I moving yet? And once it starts moving, I might even whip up on my phone and take a look at the graph and see how quickly it appears to be moving and make my decisions based on that. Yeah, so you there's definitely learning, you know, the insulin to carb ratio. And, you know, there's a learning curve to it for sure. But it is insulin that works. Amazingly, you know, it's so good at doing what it does. But you know, a complex meal like a Mexican food, oh, my goodness, you know, if you sit there and eat half of the chit bowl, which I desperately try not to, but sometimes it happens. Yeah, they're very salty. That is five hours got that is, you are asleep in bed, and your blood sugar is skyrocketing five hours later, and there's nothing a president can do about that. So you do have to be careful with dinner. If you're a big dinner eater,

Scott Benner 51:02
what do you mean by I can't do anything about that? Like what? Well, we put a real number a number to it and tell me what what would happen?

Kelly 51:08
Well, I'm just saying so I keep my you know, things set 70 to 130. Sometimes at night, I don't hear my alarm. Not gonna happen. I mean, I try to but sometimes you don't. And so you know, let's say I don't know, you've had dinner at seven, you're going to bed. It's 10. Everything's looking great. You've got your number where you want it to be. And 12 o'clock rolls around and blood sugar is skyrocketing from the fat and the protein and whatever else and you're asleep. Yeah. And the FISA is not active in your system, because it only lasts about an hour.

Scott Benner 51:43
So if you're in that situation, and your blood sugar's out to 85 hours after these chips, you have this stuff and it goes right down or if it I mean, that's what you're doing right. You're after. So

Kelly 51:54
you Yeah, yeah. So

Scott Benner 51:57
I mean, but it goes right down. You

Kelly 51:59
wait, yes. And it I mean, the drops are really cool to see on the graph, like you can go from 400 to 100 in an hour. Does it

Scott Benner 52:09
feel bad like it does when you're dropping on liquid insulin? No, you know what I mean by that, like, you can get heavy and feel the fall like Does that ever happen? I

Kelly 52:18
cannot say that I experienced that.

Scott Benner 52:21
Had you experienced that on Humalog ever? Not?

Kelly 52:25
No, no, I don't think so. I mean, I think that way when I'm low, but not if it's just coming down.

Scott Benner 52:31
Yes. Some people can feel the fall. Okay. Yeah. So they're higher. Yeah. And they can feel it. They're like, they feel like, Whoa, it's something's happening. It's interesting. Yeah. So I was just wondering, okay, so, I mean, what is the right word?

Kelly 52:44
What would it looks like?

Scott Benner 52:45
I didn't know what it looks like. Yeah. Okay.

Kelly 52:47
And you just go. And that's it. Right? Yeah.

Scott Benner 52:53
You're vaping. Your kids are no, no, you're all set? Yeah,

Kelly 52:58
I had to tell all the kids that have substitute teaching the last couple of years. And I'm like, Okay, I need to talk with all of you guys about this. I have diabetes, I inhaled insulin. This is insulin and is not a vape pen. When you see me taking this.

Scott Benner 53:13
Yo, Kelly getting high in here. That's what they're sure. It's just the it's just the it's just the CBD. I understand. No, but you know what it made me think when I just saw it. I don't obviously, I'm not an engineer, or a doctor, or honestly, probably somebody should even be listening to it. But that's not the point. But why couldn't they put that in a pen and give you a bigger cartridge that and meter it off? Like, like, like, that thing has how many? They measure by units? Right? But like what that one has four? There's a there's like that it goes like that, right? So why couldn't you have like a bigger device that had like 100 in it and you could just like dial it to four and then hit it. And then you wouldn't have to throw it away? And that you could look like a proper stoner while you were taking care of your blood sugar's and, yeah, yeah, but you don't I mean, like, that's got to be that. Why would they do that? If they could? Maybe because they're not selling it? They don't have any money. But I'm so sorry. I really wish more people would use it. Like there's I do, too. Yeah. Yeah. Because as you're describing it, I think I could see Arden doing this. Mm hmm. You know,

Kelly 54:25
I and I've tried to talk to you about it before, but oh, yeah, she would argue

Scott Benner 54:29
immensely. I tried to get her to make a setting in our app the other day, I'm six days into waiting for it. I'm like, can you make the 1.3 1.35 And she goes when I have time.

Kelly 54:42
So Well, the problem honestly, I don't know why it hasn't taken off better because as I said, if someone was diagnosed today, and the doctor said you can do this or you can do this. I don't know anyone that would say give me the needles, give me the pump. Give me the tubing give me all that stuff. No. I don't want to carry this around. You know, I've

Scott Benner 55:03
honestly never heard anybody talking about it, who likes it to said anything different than what you've said? Like, really? I do think like, being genuine, like, people are gonna be like, Oh, here he goes. But taking something into your lungs thing. I think that scares me. I just think that scares people that that I think is one of the biggest problems with it. Like, is that is that whether or not it's going to harm you in a different way or not? I mean, anything that you take that says, Hey, by the way, if you have bronchial problems, stop taking it immediately. Makes me go, Well, why don't I just not do that at all, then? Like, you know, it's like, you know, if Scott, I don't want to say a drug name, because I'm just gonna make something up afterwards. But if this drug makes your penis fall off, you should stop like, Okay, I'm just not going to do that, that if you don't mind, like, you know, like, it's, it's okay, cuz everything's still stuck to me. And I'm not taking it. I think that's part of it. I don't think it's the visual aspect. I don't think people would diabetes, kind of give a crap because they're already injecting things and pulling out stuff and pushing buttons. I don't imagine people would care too much about that. But I'm only going on, like, how it strikes me and how it struck me originally, when somebody came to me, it feels like 10 years ago to talk about this. And I was just like, I don't know, like, how am I supposed to ask my nine year old to inhale? Something? Like that? Seemed like, what if that isn't? Okay, five years from now? Like, what am I going to do, then? You know, is my concern. But anyway?

Kelly 56:23
No, and I have the same concern. I mean, I think everybody probably does. And I've been on it now, just for I started in 2017. So I've been on it six years. Yeah. I also see a allergy and asthma doctor. And when I started taking it, I did not talk to her first, I was a little scared about that. And I just wanted to try it. And so when I did go back to her, I told her all about it, her partner in her practice has type one. And she it was amazing her response to me because I was like, oh, so I'm taking this, you know, drugs, I'm using my lungs. And she was like, Do you know, like, every single drug I prescribe all day long to every patient, they take through their lungs, and let me tell you why it's such a good idea. Your lungs, you know, the the insulin goes into the lungs and the lungs? Well, I'm probably not getting all this biology, right. But it just shoots into the bloodstream. So it is in your lungs for like, I don't know, a split second. It's not really it's not really, the lungs kind of act like the syringe and it's, it's already in your body, and then it's instantly in your bloodstream. And that's why it works. So well. I've had people say, you know, if you've ever smoked anything before, that's why smoking is so popular. It's instant. Yeah, whether it's, you know, marijuana cigarettes, whatever it is, you take that drag, you inhale that in, and you're like, Whoa, and that's what a Frezza does. So that's kind of the beauty of it. But what she said to me at the time, and it's just, it's given me comfort. She said, Listen, you may not know if this drug, you know, could be harmful to you, like, let's be real, we don't know that. We don't know that it is, we do know what poorly controlled diabetes will do to your body. Absolutely. 100% been proven over and over again. So why not take the chance, you know what I mean? If you are going to control yourself better with this thing, then that's what I would do. That's what

Scott Benner 58:32
I'm imagining a setup where you do this along with like a GLP drug to, and probably need even less of it. Like there's so I can only speak, just, you know, from what people tell me. But there are people listening to the podcast now. One I'm thinking of specifically, whose kid went on a GLP medication. And that kid as type one, and their insulin needs are going down significantly. Like not only did the kid like lose weight, but like, boom, like, their needs go went way down. Like I'm trying to imagine if I honestly think that if the research keeps going in the way it's going, you might see people with type one put on a low level GLP to keep their insulin needs down. And so now if you're on that, and you're shooting the true Siba and and huffing your fries at your meals, like I wonder if that wouldn't like be even like a smaller need for the Joseba and for the A Frezza. And if you could eliminate, you know that I don't know that that's crazy. You know, so I don't know if you know anybody using a GLP medication, but I don't have diabetes. And I've worn a CGM while on a GLP and my blood sugar is astonishingly low unstable, like not too low, but like just it just doesn't move around a lot anymore. And that, you know, that alone is a big deal. Also, I've lost 36 You've never like met me in person before but a handful of months ago I was 35 pounds heavier than I am right now.

Kelly 1:00:06
Are you sure you don't have type one? No, I

Scott Benner 1:00:09
don't I just I'm taking GLP medicate, I just shot it this morning. It's still in the trashcan, actually. But that's just like, I haven't changed how I eat drastically. Like my wife and I were sitting in a restaurant before she left for the maybe day before she flew this week. And it was like Saturday. And I think we felt young for a minute, like the kids are gone. And we were like, who had to go shop. He felt young, she needed a bra. Like we were like, gonna go out and go shopping and everything. Oh, wow. We're like fancy. And we're gonna leave the house, except in our car. We're showered. It was all really exciting. And you won't understand when you get older if you're listening. And like, she's like, let's stop and get lunch. I'm like, oh my god, we're gonna go to lunch too. I was like, this is such a big day. I didn't know we sit in this restaurant. And it's just like a, it's I don't know, it's just a, it's just a place near the bra store. Like it wasn't anything special, you know? And I was like, I'm gonna get a burger. I haven't had a burger. And like, ever. And I was like, I got a burger. And it came with some fries. And she got, I forget, like some sort of a wrap or something. And 20 minutes later, we're both looking at the food. Like, why did we order all this like we could have just like, we could have got one thing and split it. I took a picture of my food, because it looks like it's a week. Ovie burger, it has two bites out of it. And I had three French fries. And I was like, dear Lord, what are we doing here? I can't eat anymore. Yeah. And, and the waitress comes up and she goes, you want a box for that? And I looked at her and I went, you really think that's going to reheat well? And she goes, yeah, it's not going to and I was like, Yeah, I don't want to waste the box. No, thank you. She goes, were you guys not hungry. And I was just like, I know, my wife and I are on that like stuff, you know, but you've probably heard of, and she's like, telling me about that. And as she's telling, as we're explaining it to her, my wife said something that really like I'd never heard somebody say out loud before she goes, it really is very low effort. Like, I'm not doing much. And it's I mean, I think my wife's lost, like 45 pounds. Like it's incredible, right? And she's like, the truth is, it's not hard. It's just happening. And is some of it just that you can't overeat? But yes, but I don't think that most people would consider what I had on my plate, even if they finished all over eating. But now I'm starting to see, I think it is. So like, you know, when people talk about portions and stuff like that, like it's the first time that I was like, I would have probably eaten this burger. Like, you know, without the weego V, right, I eat a little less of it than I would hope to win on it. Like, I wish I could have got half of it. And that might have been nice. But I just think that calories and portion and everything like our brains are like, flummoxed at this point about what actually makes sense. I gained two pounds in the last two days for eating dry rubbed chicken wings. So just adding extra salt to my diet for a couple of days. Had me like retained to pop two pounds worth of water, it'll go away in a couple of, but that's not a thing you think about when you're like living your normal life. And now I can kind of see it more clearly. Anyway, that's a long way away from the idea that I think GLP medications will get prescribed to type ones in the next handful of years. And I think you're gonna see an astonishing drop in their insulin needs from it. That's pretty much it.

Kelly 1:03:23
It's funny when I was first diagnosed, I used to get just furious furious furious with the researchers and the pharmaceutical companies coming out with new insulin new insulin new insulin. I was like, we don't need new insulin. We need a cure stop spending money on this new stuff. And now I'm so grateful. You're like damn right? Like oh, maybe they were onto something there me

Scott Benner 1:03:49
inhaling my insulin like a fancy lady although the little plastic thing is a little ridiculous looking like it would be nice if it came in on like a nice case or something you

Kelly 1:03:58
know. So and then the other thing with with a Frezza. So it does come in these prefilled cartridges. And the consistency of it is like powdered sugar. It's very very soft. Fine. I don't know if I can show you I'm sure I can't that's beyond

Scott Benner 1:04:18
my imagination. Then it just air it. The little Oh, I see. Okay.

Kelly 1:04:23
Have you seen it in person or No, I

Scott Benner 1:04:26
have held one. Yeah, like so it goes into the cartridge and then the cartridge kind of like, Aaron I'm using the wrong word. Like, what's the word I'm looking for? It's an O one at the top. There's a hole in the top. Now it takes the powder and

Kelly 1:04:39
you see the little hole right there. My fingernail. Yes. Okay. So when when you slide it in to the thing this little basket goes from this position to the center. Oh,

Scott Benner 1:04:51
you don't have to do it. So it slides over to the hole and makes it available to the hole then.

Kelly 1:04:55
Exactly. Then you use slurp it up with this thing. A lot of people I think it's nasal spray for some reason, or like, then you stick it in your nose like, yeah, no. Yeah, so when this thing opens, oops, I had one in there, oh, I see, oops, there's a little, that's how it sets in there, you close it up, it's snaps into place. And that snap causes this thing to move to the center. And then you take it, and that's it. So

Scott Benner 1:05:21
it's not propelling it at all, it's just you something that's making that happen. Right and that interesting. So it

Kelly 1:05:27
comes in four unit cartridges, and then an eight unit cartridge that one is green, instead of blue. And a 12 unit cartridge is yellow. I because as I told you, I'm pretty sensitive to insulin. Most meals for me are maybe eight units, and it's more like I need to take it at two separate times. So I need a four when I'm first taking it, and then maybe an hour later, maybe a little bit longer, I might need another four. So I only order for this is all I get. And if I need less than this, I open this little baby up very easy to open up. And this is off label splitting your insulin cartridge. So then you grab another one that you just used and you lips and you just dump it out. Oh, you poor you eyeball it total eyeball.

Scott Benner 1:06:18
So you are looking like a pothead dividing up your weed on the countertop. And

Kelly 1:06:24
I first did it. I was using magazines and credit cards and my husband's like honey, syrup syringes to white lines. But anyway, so then I mark it like that. Okay, a little black. Know what you did. I know that this is one that split. So this is basically one unit of insulin of of human log like the equivalent of one unit of a fast acting insulin. This one is equivalent to about two, I see. Now I've even gone so far as to split this, the one that I already split, make to make it more like a half the equivalent of a half of the unit. So a phrase that comes in the four, eight and 12 unit doses, but a four unit cartridge of a Frezza is equivalent to two to two and a half of like the Asper homologue or Novolog, or any of those. So it's not a one to one comparison. So what

Scott Benner 1:07:20
if there was a meal that literally was like 100 carbs? Let's say you went that you had the chips and the salsa? Yeah, how much of that you end up using that?

Kelly 1:07:31
Oh my gosh, a lot. So I would say if I was going to eat something that I knew was just trouble. One of the things I love is also evals. And those can be very troublesome. I try to get protein added. I tried to you know, add stuff, that's protein II, but if they've got bananas on top and bananas inside, and banana, banana, banana, it's a lot of carbs. So I would definitely take two fours to start with. And then I would probably need to fours in about an hour. And then I would probably need another for about an hour after that. And maybe even another for an hour after that. So probably, I would say that my insulin to carb ratio is maybe like one to 12 Probably.

Scott Benner 1:08:24
Did that change for you when you went from liquid to this? Your carb ratio? No, I don't think

Kelly 1:08:29
so. Really. Okay. So anyway, it but it did take a long time to get used to this. And the other thing that I feel like I'm jumping around right now. But the other thing that messed me up when I was first learning how to use it is I would wait two hours to take another dose because that whole don't stack your insulin right thing was so strong in me. And so Anthony, I would call him and he'd be like, Hey, I see you're too 20. Like, what's up? And I'm like, well, it's only been an hour and a half. And he's like, yeah, go ahead and take it

Scott Benner 1:09:03
because it's so fast in and out. It's gone already. It's gone. How long do you think it lasts inside

Kelly 1:09:08
you? For me, and it kind of lasts longer the bigger dose you take. So if you get their pamphlet, you know the paperwork and read it. It'll tell you I think it tells you up to 90 minutes for four units for the four unit cartridge. It does not last that long in me. I would give it 45 minutes tops. And pretty much by about 30 minutes. It's mostly done and that's

Scott Benner 1:09:32
your with food act of venue is how it feels like what if you what if you were 150 it had been six hours situate you put four units in do you think it would it would hit you longer than or do you still think 45 minutes and it would be done for you know

Kelly 1:09:46
45 minutes and it would be okay. Yeah, you know for correction purposes at night when I'm asleep and I wake up and I'm high. A four unit cartridge will lower me by about 40 to 50. That's it During the day, a four unit cartridge probably drops me you know if I'm just moderately active walking around the house doing stuff not exercising, right? It'll drop me probably 70 ish, maybe 80. If I'm exercising and I take a for holy goodness, just look out I hope you brought some glucose, because it blasts through your pretty quickly. It will absolutely double whatever it is at its best. So no, I mean, I could drop 150 from a four unit cartridge for sure.

Scott Benner 1:10:35
We should probably get a type on who smokes crack to really explain to us how how it works when you inhale something, right? Yeah, no, it's just a different, like the delivery system is just different. So people's understanding is different. Like you don't have any understanding of injecting insulin till you have to do it. And then you slowly figure it out as you have examples of it. But you just did the same thing you just started over and figured it out. Now you have it down to how long have you been doing it?

Kelly 1:10:59
Since 2017? So it's 23. Now, so six years?

Scott Benner 1:11:04
A long time? Yeah. And what's your what is your one say now.

Kelly 1:11:06
So the last one I just had was 6.2. But we just moved and really being in a big huge house after 12 years of living, there is no joke. So I had a big struggle on my hands when we were moving because you know, there was just always too much activity going on. So anyway, I blame it on that. But when I started, I think I was 6.5 when I started a Frezza. And I the next agency I got was 6.0. The next one I got was 5.7. So I'm usually between 5.7 and 6.2. That's is is typically what I am. And it's and the reason you know that it's just so nice is because there's no effort. I mean, yes, I keep track of my CGM. But that's it like I don't have to order. I don't have to worry about you know, ordering a pump and pump supplies and stuff to keep my pump on. And you know what I'm saying? It's like, yeah, I have to see, but I have a Frezza. And I have my Dexcom also something about a Frezza that, you know, again, all off label stuff. But I have a Frezza that expired in 2019 in my drawer in my bedside drawer, and every now and then I pull one out. No problem. I don't think it expires. It can be in any temperature hot or cold. Where I live, it is extremely hot in the summer and very, very cold in the winter like snow. And I keep a Frezza in my car year round just in the glove box if I ever need it. And in fact, the 2019 stuff that I have on my bedside drawer I had in my car for probably two years before I brought it inside. No problem works great. Your insurance covers it no trouble. It does. They gave me a bit of a fight in the beginning and I loved it so much. I was like I don't care. I'm gonna pay for this stuff. Anyway, very glad that I didn't have to because if you think normal insulin is expensive, a Frezza is very expensive. Like I think it's a lot more than the liquid insulins are, however they do. The company has you know, savings cards and all that stuff and and will work with you. But my husband has a wonderful job with a big big company and I pretty much get whatever I want whenever I want it with insurance. Yeah, I find oil and I'm so I mean I'm so thankful for that. I know joking about it. But I'm so good thing though. I

Scott Benner 1:13:36
feel the same way. Like when when we went to the doctor and they were like, you know, we could put you on we go reefer Wait, I was like, great. She's like, well, a lot of insurance doesn't cover it. So we'll see. But our insurance was like, Yeah, sure. And then I've heard other people who are like, you know, they get fought like tooth and nail over. I have a family member who was told you can use it. After you become pre diabetic, we'll give it to like she was like on the verge of prediabetes but not there. And so they would not give her like we go V or something like that to get her to keep that from ever happening. But they said don't worry, once you're pre diabetic, we'd be happy to give it to you that and she was like, so if I just get a little sicker, then you'll pay for it. And they were like, yeah, that's pretty much it. She went through a different couple processes and couldn't get them to budge on it. That's exactly what they're waiting for to get sicker so they can make her better again. I was like, wow, it's fascinating. So, I mean, listen, I feel grateful to I can also tell you that from a very young age, I was very focused on having good health care, and good credit like that stuff was in my head when I was in my early 20s. I worked towards that like it's I didn't lock my way into having decent insurance like we kind of broke arms together, to be perfectly honest. So anyway, it's very cool. Is there anything I'm not asking about that? We should be talking about?

Kelly 1:14:56
I know I'm so trying to think of all the things with a Frezza Because I, you know, people ask me a lot. And I've kind of given given back a little bit with, you know, friends, family, strangers, whatever, in terms of trying to help people get started on a Frezza. Because part of the issue and it's a huge part of the issue is most endos do not understand how it works or how to educate people on it. Yeah, that's everything. And so they just give it to them. And then people take it and they go, Oh, this stuff doesn't work. I gave myself a four. You know, normally, I take four units of human log with this meal. And that's all I need to do. I took before and nothing happened.

Scott Benner 1:15:38
Well, if you're listening to this, welcome to the problem, because everyone has the same problem. Pump companies have that problem. CGM manufacturers have that problem. Everyone has that problem, they put this thing out, they need somebody to teach them how to do it. FDA doesn't let the company teach it. So then they're stuck with, hopefully your doctor understands it. But most of the time, what ends up happening is this people end up going this thing doesn't work. Right, whatever this thing is. And

Kelly 1:16:05
so you know, with a Frezza, again, it's not a one to one ratio. So if you used to take four units of, you know, human log with your meal, you take four units of a Frezza. It's really two units of SEMA log that you're taking. And it's going to be out of your system in 45 minutes. So depending on what you ate, that may not be it's well, it already isn't enough. If you thought you were taking four, you really only got two, it just goes on and on. So a lot of people, you know, go online, and they're like, I did this and nothing happened. Like, well, something did happen. I promise you would have gone a little higher, had you not taken it. But it all it did was tried to hold that blood sugar as best it could for 45 minutes.

Scott Benner 1:16:49
That's that's all it does do. Yeah, the education part is, is endless. I mean, there's a reason why the podcast is so popular. Like it just, it talks about a thing that nobody understands. And nobody talks about, like you said earlier, like no one ever taught, told me to Pre-Bolus Like, I just got the chance. I've had a couple opportunities to speak in public recently. And when you say this out loud, and talk about, you know, just Pre-Bolus Singh and the idea of lining up the action of your insulin with the impact of the carbs. I can see people's faces. Go, oh my God, that's the Oh, holy hell. Yeah, yeah, that makes a lot of sense. And you just think like, the same thing. Like you said, you just never would have thought to do it on your own. Like somebody said, Do it like this, and you skip past that part. You never go back again. You think, Oh, this must be diabetes, my blood sugar goes up, it comes back down. Like, you know that I get low I eat it goes up like this is this is the game. And it's fascinating to watch people like, like, they think all this experience that they've had, and all these moments when they thought something must not be right here. But the doctor told me so they let that part go to watch. It hit them as fascinating. Like it really is.

Kelly 1:18:01
And for me, I can't remember what it was. But regular, they did tell you to Pre-Bolus with regular. And it was either 30 minutes or an hour. I can't remember which. And I did that with regular. And then when homologue or whatever the next fastest, you know, acting insulin came out. It was like, Oh, this one works fast. Never said yeah, it was never said. And by the way, you need to take this before

Scott Benner 1:18:30
it wasn't fast. It was faster than the last thing. And even the new stuff isn't fast. It's just faster. The thing before this, that's all Yeah, and you know, when they tried to make them quicker, it you know, V ASP and those things, it works for some people and then doesn't work for other people. Or like my daughter can't use them. It makes her skin burned. Like not not this top but like she gets a like a burning sensation under her. I think it's the vitamin B they put in it or something that speeds it up. I'm not sure. Again, you probably shouldn't be listening to me for the fine D hills of science, but but she can't even use it. So it's still not instantaneous. It's not like wow, it's working. You know what I mean? Like it's just quicker. So yeah, yeah, I don't know if they're ever gonna get anywhere with that. It would be nice if they did, or, you know, if they could find a balance with people. I mean, inhaled like any mankind makes. Makes a Frezzer. Right. That's the company. Yeah. Their stocks not exactly going crazy. Which makes me think that it's not catching on. Yeah, as fast as they could.

Kelly 1:19:34
I mean, it is, but it's literally catching on by word of mouth. And a lot of countries don't have it yet. Sure. And you know it and then it really, especially if you are, you know, if you've had diabetes, and you've used the other types of insulin, it really really takes someone to hold your hand and I have probably worked with 25 people over the course. Over the past six years, who have started using a Frezza? Yeah, there have been a couple who decided that it, you know, for whatever reason, it just wasn't for them. But I truly believe without me. And it's not just me, it's someone that understands it, holding their hand and walking them through how to use it, when to use it, why to use it, what it does, you're not good. Everyone would fail. Yeah. And so it's a pretty, it's like using any other insulin and really learning how to use it properly. It doesn't happen in one day, it doesn't happen in one hour. And that piece of it just isn't there. And, you know, it's really frustrating. So I told you, I had a degree in nutrition. And based on my experience being diagnosed and stuff, I decided, man, I just have to go into diabetes education, this is just, you know, this is my jam. This is something I'm passionate about, this is what I want to do. And so I either needed to go back to my nutrition roots and do an internship, which is an unpaid year long internship, or get another degree that would give me a different route. So I went back to school and became an RN, with the sole purpose of wanting to do diabetes education. That's all I want to do. I don't want to be, you know, a nurse that works in the hospital. I don't want to do those things. I want to be

Scott Benner 1:21:18
an Instagram health coach. No, no. I'm sure there are very nice Instagram health coaches, it's just become a thing at this point. So

Kelly 1:21:27
yeah, it definitely yeah, that's always you know, that's just always been my passion. So anyway, I have actually stayed at home with my kids, my youngest is a senior in high school this year. So I'm feeling like once he's left the house, it's maybe time for me to get a job. But you know, I really do want to go into diabetes education, however I do. And I don't, I would love, love, love to go work for mankind and go out there and spread the word, but half of the stuff that I do, I can't tell anyone I do if I work for them. You know, it's just like you and your podcast. I mean, the things that you share with people and that people, you know, that this community shares is like, hey, there's a hack for everything. And if you work for one of those companies, your hands are tied, and you can't tell people about those hacks. So I don't know what I'm going to do. Because I don't want to do that.

Scott Benner 1:22:21
Somebody asked me one time, you should be a diabetes educators like, do you want me not to help people with diabetes anymore? Because that will be the quick way to that happening. So

Kelly 1:22:29
exactly. Yeah, that's, I feel like I would start every day with I'm not supposed to tell you this. But

Scott Benner 1:22:35
well, I think it's just the one on one, like, even Jenny will tell you like, she's like, she was like, I come on the podcast, because I reach a lot of people. And, you know, like, in my regular life, she said this out loud on the podcast, I see one person at a time for an hour, you know, and it's, it's really incredibly, like fulfilling and valuable for me and that person. But, you know, you're saying things that if 1000 people could hear it, you'd help 1000 people at a time. And that's how I think of the podcast is, you know, it's a podcast, it's doing like over a half a million downloads a month right now. So you know, you're not like, you know, it's not a half a million people, but it's still, it's a lot of people and you, it's your opportunity, like the technology finally allows you to reach people like I don't want to under I'm not saying that there aren't like diabetes educators aren't important thing. But it's a lot of effort and a lot of work to learn something that you're learning years ago while you're training. And then you get here into present day, and the thing you already know might be not as valuable anymore. And now you're stuck telling people one at a time about it, when you know, I mean, and it's not as just as easy as making a podcast, either, by the way, like there are plenty of diabetes podcasts that have completely failed, and they, they don't go anywhere. So it's not you can't just say, Well, I'm gonna put the information out there. And that's how you'll reach people. It is a fine line, it's quite the dance to make something that is entertaining enough that people will come back to and listen through and still put information and at the same time, we have to joke about your ex husband, to get them to the Frezza like I know, people don't know that about themselves. But you should know that about yourself. Like, yeah, yeah, people don't want to sit and just be lectured to. Like it's not fun. So, and then you actually have to be entertaining, which is me taking credit for being a little entertaining. But I mean, me aside, like, there are plenty of people out there that have good information, who are hard to listen to. Yeah, they don't know that about themselves. So it's very difficult to make it happen. And I can't even take credit for it. i If you asked me about this privately, I would tell you I don't know how I made this work. Yeah, so

Kelly 1:24:47
I know you do a really good job. And it's you know, I was I was leading up to this because I think I scheduled this a year ago. That's how bad your your calendar was. And I was like, Okay, I need to have a timeline. I You know, I need to come up with all this stuff. And I thought no, because, yeah, that's exactly what you just said. And you're just so good at asking the right questions. And I think you have a really funny sense of humor. I have been told by people before, whenever I just, you know, I don't know what started acting stupid, not that you're stupid. I don't mean, plenty stupid, don't

Unknown Speaker 1:25:21
worry, they will say you

Kelly 1:25:22
are a 12 year old boy. And I, sometimes when I hear you say certain things, I'm like, he is just like me, he is a 12 year old boy.

Scott Benner 1:25:30
No, we obviously have a sensibility. We put cameras on and I asked you to tilt your lid down on your laptop a little bit to make the sound better. And you sort of like it started to go down your shirt. And we both had the same exact thought at the same I watched it happen on our faces. We were like, Oh, geez. So I know you're thinking, like all broken up in like a child like I am. So I'm like, go knock down your shirt. And you're like, and then you just said I probably shouldn't wear this shirt. I didn't say that. By the way. We're almost there. Kelly can almost hear you know what I can see on your face like you immediately and in a joking, light hearted way. You were like, Oh, I shouldn't wear this shirt. And I was like, Well, I don't mean for that. It is it is very, I get your point. It were at the end of the podcast. So I'm going to tell you this now leave. There was this video that came on YouTube. And it was this very respectable person in the diabetes space. And they say like, you know, there's two problems with diabetes education. Oh my god. Okay, let me hear this.

Kelly 1:26:35
There's at least two Yeah.

Scott Benner 1:26:37
This this person had to one of them was that the information is never interesting. It's never entertaining outside. While they were right about that. Let's see where this goes. And the other is this thing I'm going to tell you later on, like always building suspense. I'll listen. And they've got a moderator moderating it. Like they plucked like a pretty big name out of the diabetes space to be a moderator. And I was like, I don't know that this is any more entertaining, but whatever I'm buying in, like, Let me listen. Well, anyway, this person goes on for what seemed like my entire life, it felt like an eternity, about talking about how things aren't entertaining. But while they were talking about I was not being entertained. I was only there now, like, for the shot and Freud. Yeah, I was like, this is gonna go way wrong. He's boxed himself into a corner. And sure enough, he was incredibly boring. And then he made the second announcement about what is going to fix diabetes education. He's figured it out. He's done research research, Kelly. There's been research done. He's been on this for years. He's got it. Here it is. He is gonna lay it out for you right now. CGM are helpful. And I went, Oh, we figured it out. I, oh, my God, that I stopped. And I closed my iPad, and left like a small child in my bed for many minutes. And Mike to the point where my wife goes, Why are you laughing? And I then told her, and then she laughed, and then we went to sleep. Anyway, that really important video has maybe almost 50 views now. So it was just fascinating to watch this person who, you know, if you just sat them down, and we're like, let's just chit chat about diabetes. they spew out so much good information for people. But instead, they spent the last two years of their life doing research to tell me something, I figured out the 16th minute I saw a Dexcom for the first time, I did not need more research to let you know how valuable this information was to your decision making. And I was just like, This is why nothing ever gets anywhere. Yeah, this right here. He's not entertaining, and he thinks he is. And he's having big ideas that I had seven years ago after five minutes. And it took him like he had to get a research study to figure it out. I was like, Yeah, we're in trouble if this is what we're waiting for. Anyway, if the person who did this heard this, no offense. I still think you're great. Oh, my God, I appreciate it. So anyway, I'm here by myself because my wife went to jolly old England for a meeting, and my dog is downstairs barking he is old. And this means he will pee on the floor and the next five minutes if I don't go, so. Okay, you were delightful. Thank you very much. I'm sorry. I'm cutting out on you quickly. But thank you very much.

Kelly 1:29:19
Thank you, Scott. Yep.

Scott Benner 1:29:26
Mark is an incredible example of what so many experience living with diabetes. You show up for yourself and others every day, never letting diabetes define you. And that is what the Medtronic champion community is all about. Each of us is strong, and together, we're even stronger. To hear more stories from the Medtronic champion community where to share your own story. Visit Medtronic diabetes.com/juice box. Don't forget we still have marks conversation at the very end. It's a terrific kind of mini episode about 10 minutes long, that goes deeper. into some of the things that you heard Mark talking about earlier in the show. I want to thank the ever since CGM for sponsoring this episode of The Juicebox Podcast. Learn more about its implantable sensor, smart transmitter and terrific mobile application at ever since cgm.com/juicebox. Get the only implantable sensor for long term wear. Get ever since. If you're looking for community around type one diabetes, check out the Juicebox Podcast, private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome. Type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community, check out Juicebox Podcast type one diabetes on Facebook. And now my full conversation with Medtronic champion, Mark. Mark. How old were you when you were diagnosed with type one diabetes? I was 2828. How old are you now? 4747. So just about 20 years?

David 1:31:04
Yeah, 19 years?

Scott Benner 1:31:05
What was your management style when you were diagnosed?

David 1:31:07
I use injections for about six months. And then my endocrinologist and a navy recommended pump.

Scott Benner 1:31:14
How long had you been in the Navy? See

David 1:31:15
eight years up to that point?

Scott Benner 1:31:17
Eight years? Yeah. I've interviewed a number of people who have been diagnosed during service and most of the time they're discharged. What happened to you?

David 1:31:26
I was medically discharged. Yeah, six months after my diagnosis.

Scott Benner 1:31:29
I don't understand the whole system. Is that like honorable? Yeah. I mean, essentially,

David 1:31:33
if you get a medical discharge, you get a commensurate honorable discharge. I guess there could be cases where something other than that, but that's that's really how it happens. So it's an honorably discharged with but because of medical reasons,

Scott Benner 1:31:44
and that still gives you access to the VA for the rest of your life. Right?

David 1:31:47
Correct. Yeah, exactly.

Scott Benner 1:31:49
Do you use the VA for your management? Yeah, I

David 1:31:51
used to up until a few years ago, when we moved to North Carolina, it just became untenable, just rigmarole and process to kind of get all the things I needed. You know, for diabetes management, it was far easier just to go through a private practice.

Scott Benner 1:32:04
Was it your goal to stay in the Navy for your whole life, your career?

David 1:32:07
It was? Yeah, yeah. In fact, I think a few months before my diagnosis, my wife and I had that discussion about, you know, staying in for the long term. And, you know, we made the decision despite all the hardships and time away from home, that was what we love the most. So that's what made it that much more difficult

Scott Benner 1:32:24
was the Navy a, like a lifetime goal of yours or something you came to as an adult,

David 1:32:28
lifetime goal. I mean, as my earliest childhood memories were flying, being a fighter pilot and specifically being, you know, flying on and off aircraft carriers. So, you know, watching Top Gun in the 80s certainly was a catalyst

Scott Benner 1:32:42
for that you've taken off and landed a jet on an aircraft carrier 100 times. Is there anything in life as exhilarating as that? No, but

David 1:32:51
there there's a roller coaster I rode at. I think it was at Cedar Rapids up in Cleveland Sandusky, and they've got this roller coaster rotation from zero to like, it's like 80 or something, you go up a big hill and you come right back down. So the acceleration is pretty similar. I would say to catapult shot. I'm

Scott Benner 1:33:08
gonna guess you own a Tesla.

David 1:33:11
I don't I I'm a boring guy. I got a hybrid rav4 I get made fun of I get called. You know, my, my wife says I drive like a grandpa. I'm a five miles per hour over the speed limit person. No more than that. So yeah, in the car. I'm boring Scott. So

Scott Benner 1:33:26
you've never felt the need to try to replace that with something else.

David 1:33:29
You can't replace it. It's you're replaceable. That's what I thought. So up until the point where someone you know, buys me an F 18 or allows me to get inside a two seater and fly it you can't replace it.

Scott Benner 1:33:40
How did it make you feel when you saw or maybe you haven't seen? gentleman named Pietro has his large aircraft license. He's flying for a major carrier. Now he has type one diabetes. Does that feel hopeful to you?

David 1:33:50
Yeah, it does. You know, when I when I was diagnosed, that wasn't a possibility. The FAA prohibited commercial pilots who had type one diabetes, but I think it was 2017 when they changed their rules to allow type one diabetics to be commercial pilots. And part of the reason I did that was because of the technology advancements, specifically in pump therapy, and pump management. So I don't have any aspirations of going to the commercial airlines, but one of my sons who has type one diabetes very much wants to be a commercial pilot. So you know, in that respect, I'm very hopeful and thankful. Yeah.

Scott Benner 1:34:23
Do you fly privately now for pleasure?

David 1:34:26
I do. Yeah. One of my favorite things to do is fly my kids to the different soccer tournaments they have all over the southeast us so last week, my wife and I and two of our boys flipped to Richmond for their soccer tournaments up there and Charlie who's my middle child has type one diabetes so you know if I can combine flying family and football and one weekend to me that's I think I've just achieved Valhalla

Scott Benner 1:34:49
so then it sounds to me like this diagnosis was a significant course correction for you. Can you tell me how it affected your dream?

David 1:34:56
Well, I you know, if I guess three words come to mind first It was devastating. Everything I had done in life, everything I'd worked up to up to that point was just taken away in an instant. And I was not prepared for that at all. The second emotion was, it was scary. I hadn't thought much about life outside the Navy, certainly not life as anything else, but a fighter pilot. And Heather and I were getting ready to move to France, I was going to do an exchange tour with with the French naval air force. So we're taking French classes. So pretty quickly, I had to reinvent myself. And then probably the most important thing at the same time that all that was going on, I had to learn how to deal with type one diabetes and how to manage it effectively. The third thing that pops into my mind, I guess, is challenging. You know, new daily routines I had to establish first was injections, and then eventually, you know, through pump management, and then learning how to count carbs and recognize highs and lows, how my body reacts to blood sugar trends based on exercise and stress and those types of things. And my goal at that time, and it still is today is to leverage technology and make sure my habit patterns are effective so that I take diabetes management from the forefront to the background.

Scott Benner 1:36:03
Have you had success with that? Do you feel like you've made the transition? Well,

David 1:36:07
I have I mean, I believe in continuous improvement. So there's always more to do. I will say the technology since I was diagnosed specifically with pump management, it's just, it's just incredible. It takes less of me intervening. And it's really done by the pump itself and by the algorithms through the CGM EMS. And to me again, that that should be the goal for everybody is to not have to focus so much on the daily aspects of type one, diabetes management, you know, we should let technology do that for us.

Scott Benner 1:36:36
What else have you found valuable? I've spoken to 1000s of people with type one diabetes, the one thing that took me by surprise, because I don't have type one, myself, and my daughter was very young when she was diagnosed. I didn't really understand until I launched this podcast, and then it grew into this kind of big Facebook presence. I heard people say, I don't know anybody else who has type one diabetes, I wish I knew more people. But until I saw them come together, I didn't recognize how important it was. Yeah,

David 1:37:06
I think similarly, I didn't know anyone with type one diabetes growing up as an adult up until when I was diagnosed. And then all of a sudden, people just came out of the woodwork, and when CGM first hit the market, certainly within the last five years. It's amazing to me and my family, how many people we've noticed with type one diabetes simply because you can see the CGM on their arm. I mean, I would say, a month does not go by where we don't run into someone at a restaurant or an amusement park or a sporting event or somewhere where we see somebody else with type one diabetes. And the other surprising aspect of that is just how quickly you make friends. And I'll give you an example. We're at a soccer tournament up in Raleigh, this past Saturday and Sunday. And the referee came over to my son Charlie at the end of the game and said, Hey, I noticed you're wearing a pump. And he lifted up a shirt and showed his pomp as well and said, I've had type one diabetes since I was nine years old. I played soccer in college, I'm sure that's your aspiration. And I just want to tell you don't let type one diabetes ever stop you from achieving your dreams of what you want to do. And this gentleman was probably in his late 50s, or 60s. So just having that connection and seeing, you know, the outreach and people's willingness to share their experiences. It just means the world to us and just makes us feel like we're part of a strong community.

Scott Benner 1:38:25
So would you say that the most important things are strong technology tools, understanding how to manage yourself and a connection to others. Yeah,

David 1:38:35
technology for sure. And knowing how to leverage it, and then the community and that community is your friends, your family, caregivers, you know, for me to Medtronic champions, community, you know, all those resources that are out there to, you know, help guide away, but then help help you keep abreast on you know, the new things that are coming down the pike. And to give you hope for eventually, you know, that we can find a cure. You

Scott Benner 1:38:56
mentioned that your son wanted to be a pilot. He also has type one diabetes, how old was he when he was diagnosed?

David 1:39:02
So Henry was diagnosed when he was 12 years old. That was just at the start of COVID. We are actually visiting my in laws in Tennessee, we woke up in the morning and he had made his bed. And several years before that we had all four of our boys tested for trial net. So you know, predictor of whether or not they're going to develop type one diabetes and whether or Henry and one of his brothers tested positive for a lot of the indicators. So we always kind of had an inclination that there was a high degree of possibility he would develop it, but we always had at the back of our mind as well. And so when that event happened, at the beginning of COVID, we had him take his blood sugar on my glucometer and it was over 400 And so right away, we knew that without even being diagnosed properly by endocrinologist that he was a type one diabetic, so we hurried home to get him properly diagnosed in Charlottesville, and then we just started the process first grieving, but then acceptance And, you know, his eventual becoming part of the team that nobody wants to join? How old is he now? He's 15 years old. Now,

Scott Benner 1:40:08
when's the first time he came to you? And said, Is this going to stop me from flying? Almost

David 1:40:15
immediately. So like me, he's he always had aspirations of flying. In fact, he out of all four boys wanted to be in the military, that was a difficult part of the conversation, and maybe something that we don't talk about as a community. But there are some things you cannot do as a type one diabetic, and that's a hard fact of life. And unfortunately, joining the military is one of those hard and fast things you cannot be, you cannot join the military as a type one diabetic. So it was very difficult for him and for me and my wife to get over. Then we also started talking about being a commercial pilot. And so I saw that same excitement in his eyes because like me, you know, he can be an NFA teen or a 737 or a Cirrus SR 20 That I fly and be just as happy. So he still has that passion today and still very much plans to eventually become a commercial pilot.

Scott Benner 1:41:00
I appreciate you sharing that with me. Thank you. You have four children, do any others have type one?

David 1:41:05
They do? My oldest twin Henry has type one diabetes, and my middle son Charlie has type one diabetes as well. The boys are twins. The oldest two are twins. One has type one diabetes. My middle son, who is not a twin has type one diabetes. I see. Is there any other autoimmune in your family? There isn't I'm really the only person in my family or my wife's family that we know of with any sort of autoimmune disease, certainly type one diabetes. So unfortunately, I was the first to strike it rich and unfortunately, pass it along to to my sons, but celiac thyroid, anything like that. Not about nothing. We're really a pretty healthy family. So this came out of nowhere for myself and for my two sons. That's really

Scott Benner 1:41:46
something. I appreciate your time very much. I appreciate you sharing this with me. Thank you very much.

David 1:41:51
Anytime Scott.

Scott Benner 1:41:52
Learn more about the Medtronic champion community at Medtronic diabetes.com/juice box or by searching the hashtag Medtronic champion on your favorite social media platform. Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way. recording.com

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#1157 Return of Body Fire

Carol is a retuerning guest with a lot of auto immune issues. She uses some old and some new meds to help her through.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android  -  Radio Public, Amazon Alexa or wherever they get audio.

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

Scott Benner 0:00
Hello friends and welcome to episode 1157 of the Juicebox Podcast.

Carol is a returning guest. She was originally here on episode 586. In an episode titled body fire, she's 44 years old, she has type one diabetes and a number of other issues that she medicate in certain ways. While you're listening, please remember 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 health care plan, or becoming bold with insulin. In today's episode, we're welcoming a new sponsor with a really interesting ad format. Instead of a classic ad, you're gonna get a mini interview just a little 92nd nugget from a slightly longer interview that I did with someone from the Medtronic champion community. At the very end of the episode, you can hear the entire recording that led to that 92nd chunk. If you have type one diabetes, or are the caregiver of someone with type one and a US resident, please go to T one D exchange.org/juicebox. And fill out the survey. When you complete that survey, which you can do in fewer than 10 minutes from your phone. Like while you're on the toilet, even you know I'm saying doesn't take that long. You're going to help type one diabetes research. You might help yourself, you're definitely gonna help somebody else. And you're going to be supporting the Juicebox Podcast T one D exchange.org/juicebox. Today's episode is sponsored by Medtronic diabetes, a company that's bringing people together to redefine what it means to live with diabetes. Later in this episode, I'll be speaking with Jalen, he was diagnosed with type one diabetes at 14. He's 29. Now he's going to tell you a little bit about his story. And then later at the end of this episode, you can hear my entire conversation with Jalen to hear more stories with Medtronic champions, go to Medtronic diabetes.com/juicebox or search the hashtag Medtronic champion on your favorite social media platform. This episode of The Juicebox Podcast is sponsored by the ever sent CGM and implantable six month sensor is what you get with ever since. But you get so much more exceptional and consistent accuracy over six months, and distinct on body vibe alerts when you're high or low on body vibe alerts. You don't even know what that means. Do you ever since cgm.com/juicebox Go find out. You just said something to me that made me laugh and I was going to describe you why I was laughing and then I thought well, let's record first before I do that. I thought I'm having her back on the podcast like she was on once great episode. I'm gonna have her back on there must be a rock solid reason that I'm doing this. Then

Carol 2:59
reasons actually one was because you were curious about how I was navigating health care in Canada because since my last episode, I had no help. And honestly, three years into diagnosis, I still have no help. And then second was you were curious about my trade job. The fact that I smoke weed, and I manage my blood sugar, but I don't take pain meds and all I do is use marijuana.

Scott Benner 3:28
I remember Okay, okay, so let's give people just a like literally like a 45 second high level overview of you. We're on episode 586. It was called What's it called? Body fire?

Carol 3:40
Body fire. Yeah.

Scott Benner 3:42
Okay. Give them enough of your backstory that we can go forward. So

Carol 3:46
in June, June 3, actually 2022 I was diagnosed with type one ladder the hard way through emerge. And within 10 hours of being an emerge, I was told that due to my dad testing and my intellect testing, I was a type one diabetic. And due to COVID, I was kicked out of emerged with insulin to Use as directed. And no one ever gave me direction. I taught myself insulin with a YouTube video and an orange. And I found you on YouTube. When I was diagnosed, my agency was 18.3. My blood work three weeks ago made one CS 5.7. My time and range is 90%. I work in trade. So I do burn through sugars but still kind of learning how to deal with that. But in Canada, our health care system even though it's free, is absolutely shattered. So, yeah, I kind of navigate through it myself. I have 11 autoimmune diseases, and insulin and Synthroid is all I take. She's,

Scott Benner 4:48
I can't tell you I don't know what's been wrong with me this week, but you made me cry right away. I just think it's the idea of being so poorly helped at the beginning, and then just sort of released And then watching you, honestly,

Carol 5:02
I think, in a way, it was kind of a blessing in disguise because I feel that if I would have been pampered by an endo clinic, I would have learned a lot of wrong things. And then it would just cause me problems. Every person I know who follows everything the endo tells them, they're a onesies all over the place, time and range is never there. They don't understand curved ratio. Like it's such little education. It's almost scary. Yeah, so I'm kind of glad I was fed to the wolves because it kind of taught me how to manage without all the bullshit from the clinics, because let's be honest, as six weeks seminar doesn't teach you nothing. And not every diabetic is the same. So they'll compare me to someone who's not even like me, and then get mad that our results are the same by pump. I'm on a T slim, I've literally done every adjustment myself. I haven't seen it. I put a call into my endo last September, because I was getting lows at work like 2.6 2.7 lows. And I'm still waiting for a callback. So

Scott Benner 6:05
maybe if she dies, we won't have to call her back. Well, I think I

Carol 6:09
figured out on my own. But it's kind of sad at the fact that I never told them I figured it out on my own. I'm still waiting for a callback. And they never got back to you know, they told me it might be November, or possibly January of 2024. So

Scott Benner 6:21
hi, I'm calling because I'm having dangerous lows. Here are the numbers we might get back to you by November.

Carol 6:26
Oh, no. The I called last September September 2022, is when I called with these lows. Oh, and they told me they might get back to me this November. So

Scott Benner 6:35
if I call on September, it's a little over a year for them to get back to me.

Carol 6:40
Yeah, and the reason their excuse for it is because when they look at my bloodwork, my a one C was okay, so they felt I was just, I guess looking for attention, I don't know. But they never took the time to look at my

Scott Benner 6:52
graph, or how hard it would be to just put one person who understood graph reading and how to talk to somebody remotely about diabetes. Well, I

Carol 6:59
did. I had to pay a nurse. So in Canada, we have private health care and we have like your public funded health care which takes up 43% of my taxes. Yeah, that free health care that all the Americans seem to think is so great up here is when a waiting for a phone call back from the health care I paid $150 for my appointment. The lady called me back and four hours. Yeah, she

Scott Benner 7:20
wanted the $150 This episode is sponsored by Medtronic diabetes, Medtronic diabetes.com/juice box. And now we're going to hear from Medtronic champion. Jalen.

Speaker 1 7:32
I was going straight into high school. So it was a summer heading into high school was that particularly difficult, unimaginable, you know, I missed my entire summer. So I went, I was going to a brand new school, I was around a bunch of new people that I had not been going to school with. So it was hard trying to balance that while also explaining to people what type one diabetes was. My hometown did not have an endocrinologist. So I was traveling over an hour to the nearest endocrinologist for children. So you know, I outside of that I didn't have any type of support in my hometown.

Scott Benner 8:06
Did you try to explain to people or did you find it easier just to stay private?

Speaker 1 8:11
I honestly I just held back I didn't really like talking about it. It was just it felt like it was just an repeating record where I was saying things and people weren't understanding it. And I also was still in the process of learning it. So I just kept it to myself didn't really talk about it.

Scott Benner 8:26
Did you eventually find people in real life that you could confide in. I

Speaker 1 8:30
never really got the experience until after getting to college. And then once I graduated college, it's all I see. You know, you can easily search Medtronic champions, you see people that pop up and you're like, wow, look at all this content. And I think that's something that motivates me started embracing more. You know, how I'm able to type one diabetes? To

Scott Benner 8:51
hear Jay Lin's entire conversation stay till the very end. Medtronic diabetes.com/juice box to hear more stories from the Medtronic champion community.

Carol 9:02
That's your $50 that's easy to

Scott Benner 9:05
understand now, by the way,

Carol 9:06
and the best part was is the lady I talked to you in Ontario, she knew who you were so it made life very easy. I didn't get yelled at for once for adjusting things and not waiting for healthcare. She says that's what I get yelled at for a lot is Well, why didn't you wait? Well, prime example I've been waiting a year if I would have waited, I'd be dead. Why am I saying be unemployed? You know what I mean? Like and then still be dead? Because I'd have no health care and I'd have no money. So Carol,

Scott Benner 9:29
first of all, I don't know why I'm so emotional today. You're like she knew you weren't. I was like, I'm helping people.

Carol 9:34
Like, honestly, God like I, I am your preacher up here like everyone who I know who is diabetic? Because they are not. I'm not the only one with these problems. Yeah, they all asked me like, how are you navigating the system? I told him I gave up on the system. And I finally just I started listening to other people who seem more educated. And I can probably tell you at least 500 people who have added themselves to your podcast. I've probably sent them there. I

Scott Benner 9:58
appreciate it. Well, thank you very much. does continue to grow it in a pretty incredible rate. When

Carol 10:02
I joined you in 2020, you had done your 10,000 people

Scott Benner 10:07
on the Facebook group. Yeah, yeah, that's 40,000 Now, it's insane. It's awesome. But it's insane. You know, what's funny is, there's an automatic, I used to do it myself, like every 300 people, I would put up a post and be like, Hey, welcome. Everybody hears these episodes like that kind of thing? It would you want that daily now? Well, it's now I automated it at 150 people. And it's happening like every four days. And crazy yeah, and I get this, you know, not not every time but every once in a while, someone will say, I don't understand, like, how often does this post go up? And they they attach the fact that there's so many people coming into the group as they go look at all these people who are getting diabetes. And I'm like, well, it's not a consideration. But I think the bigger consideration is look at all these people who were not getting reasonable help. And they're there because you don't end up in a Facebook group, or listening to a podcast unless

Carol 10:58
you don't end up online pleading for help through Facebook groups, because you're always told your whole life do not believe strangers. Don't believe everything you read online. Yes, but yet, for some reason, what I read online, is what helps me if it wasn't for the people in your group. And what I read through, you're like, I listened to you on Spotify. So between Spotify and the Facebook group, if I didn't listen to strangers, and believe what I read online, I would not be where I'm at today. Yeah.

Scott Benner 11:22
And those people still only make up the portion of people who were desirous and knowledgeable enough to deserve to want more to do better, and had the nerve to reach through the system that tells you don't go online and talk to people and then actually have the nerve to reach out. So when I look at that number 150 people every four days going into that Facebook group, I think, what a small number, because of how many other people are out there who are struggling, and we'll never go look for the help.

Carol 11:52
Me I look at it opposite. I'm like, what a shame the only 150 People who are struggling because I know, just from my own experience, 90% of diabetics

Scott Benner 12:01
are struggling. Yeah, no, I believe that I really do. Well, I just

Carol 12:05
wish more people that get on the train. I think a lot of people when you like a lot of people, I talk to you and you've been diabetic for 20 years. And even though you're doing the same thing over and over again, and it's wrong. They still feel safe because it came from a medical professional. Yeah,

Scott Benner 12:19
no, I know. I know. And I can't listen, I can't argue with them. I I've said this a million times the pocket. I wasn't prior to my daughter's diagnosis, a person who would have listened to somebody else, I would have made every one of them the same way. No, no, no. Yeah, I would have been like you're listening to someone on the internet. You're gonna die, you know? So, you know, or Tumeric does what? Yeah, and I don't know, like at this point now, I've had people on are like glucose goddess came on. And she just talked about eating in a certain order, like putting your foods in a certain order. I do that. I heard back from so many people about like, they're using less insulin or they're having like better outcomes. I'm like, oh my god, like, why don't we just listen to everybody and then figure it out for yourself?

Carol 13:00
Like I put myself on Metformin, for example, through my GP. Really? Yeah. And honestly, it was the best decision I ever made. Because as a ladder, I was chasing chasing highs and chasing lows. And according to my doctor, they just wanted you know, back then they were like, just turn up, turn up, turn up, turn up. And I was like, Okay, this doesn't make sense because I'm on bio meds. So I learned that the bio meds they're steroid based, like all bio meds are they cause a resistance in your body? Yeah. And the resistance was, was waking, like I'd gained almost 30 pounds and my doctors were like, it's okay, we'll put you on his epic. Well, I tried that train. And that didn't last long. As it was epic. I know why it's not meant for type ones you will yourself and puke out of every orifice of your body and food will be not appetizing. You'll almost go in DKA and I'm very well versed. And it's still it was a challenge but I added the Metformin the extra long release. Yeah 500 milligrams a day about the beginning of May I put myself on it, and I've lost 27 pounds. My insulin needs have cut down by 60% my carb ratio is now back one to 15 it was that one to eight. And yeah, it's

Scott Benner 14:15
so interesting how different things work for different people like you just That's

Carol 14:19
why I get mad at Doctors like why do you keep telling me well Susie did this so we're gonna do this for you. But I'm not Susie. I'm more like a SAM like, I work in trades. Yeah, I mean, like in a lot of doctors don't when I say I work in trades. I think I'm a flagger lady. I'm a carpenter. I'm a roofer. I do general contracting. I'm building a building right now that's 140 by 60 with a 20 foot ceiling and I've done every part of it from the concrete to right now on doing finishing work. So I'm not like Susie

Scott Benner 14:48
Oh, that's interesting. So Carol, when you tell somebody you work in trades, you think they think you're the person that stands to the side of the road and like wait,

Carol 14:56
I've been in trades 25 years and I mean way before autoimmune diseases I had a single one of them and it's pretty much the same thing. Like I tell people I work in trades, they usually assume I'm a laborer. I'm a helper, or I'm a flagger it's always it's very rare. Or even like if I voiced my opinion on Red Steel so me I've got three licenses even at work, I work with all men. And unless the men know me, and I pipe up, they usually kind of look at me like, why is she talking?

Scott Benner 15:27
She's sounds like a lot of fun. But I want to get back to my thought about like, those Olympic didn't work for you. But I've I've seen it work for other people with type one. This episode of The Juicebox Podcast is sponsored by the ever since CGM. Ever since cgm.com/juice. Box. The Eversense CGM is the only long term CGM with six months of real time glucose readings giving you more convenience, confidence and flexibility. And you didn't hear me wrong. I didn't say 14 days, I said six months. So if you're tired of changing your CGM sensor every week, you're tired of it falling off or the adhesive not lasting as long as it showed or the sensor failing before the time is up. If you're tired of all that, you really owe it to yourself to try the ever since CGM. Ever since cgm.com/juicebox, I'm here to tell you that if the hassle of changing your sensors multiple times a month is just more than you want to deal with. If you're tired of things falling off and not sticking or sticking too much or having to carry around a whole bunch of extra supplies in case something does fall off. Then taking a few minutes to check out ever since cgm.com/juice box might be the right thing for you. When you use my link, you're supporting the production of the podcast and helping to keep it free and plentiful. Ever since cgm.com/juicebox.

Carol 16:59
podcast I think it wouldn't work for me if I'm not so active. Okay. Because you really need I didn't really have an issue was more when I was working. Okay.

Scott Benner 17:08
Yeah, cuz I'm listen I'm taking we go V which is ozempic. It's just named something different. And I mean, a couple of things. You said that you can't argue with it like, like losing your your flavor for food, your tastes for food,

Carol 17:22
I lost my taste for food. I was pretty much I was living on like six units of insulin a day because I couldn't even eat. But I needed to, you know what I mean? Like so I know for a lot of diabetics, ozempic works great. But again, we're not all the same. And I think if I was more of a not so much a homebody but not so active in work. ozempic might have worked better for me. When I found that it was very hard to control. My burn at work. Well, the first few days I took it, it's stronger than the tail kind of thing. So I had like 16 profiles in my pump. And you know, sometimes you forget to change the profile. Right,

Scott Benner 17:57
Carol? Carol? I've been trying to say this to my wife, and she doesn't agree with me, but I think that too, it's a once weekly, injectable. And I always say to my wife, I lose weight in the first four days of the week. Yep. But I level. Oh, yeah. Three days. Yeah. And then you can check

Carol 18:15
it again. With symptoms, like I found my first three to four days, I was horrible. So what I would do is I would take you on a Friday, that way there I can get through that first couple days over the weekend and then go to work on the weekend. But my issue is is like somewhere I take bio meds. I can't inject them too close together.

Scott Benner 18:33
And your your BIOS or for what? Tell me again, I

Carol 18:37
have ankylosing spondylitis, rheumatoid arthritis, I have fibromyalgia. That's what the bio meds are for is for those ones. But the bio meds are given me a condition called NLD to skin condition. So I took my last biomed injection three weeks ago, to see if I can because I never had the issues before the biomed. So I'm kinda again no doctors. So my DP he trusts my opinion a lot. And he's awesome. I can get into him quickly. He kind of goes with my craziness. So yeah, we'll see how it goes. So far. The best drug I've added is the Metformin, honestly, yeah, it's helping you the most. Oh, 100%. Like I said, since May, I've lost 27 pounds and my insulin needs are like back to when I was first diagnosed and better. Like,

Scott Benner 19:23
are you scared about stopping the BIOS about what any of your like what condition that you're taking them for? Do you most don't want to see come back

Carol 19:33
to ankylosing spondylitis, just because of the fusion it causes in my spine and all my ball and socket joints. So I guess my biggest problem is, again, is lack of health care. So before COVID I was very sick, but no one would listen to me because I didn't look diabetic and they kept telling me it was paying conditions and stuff but deep down my thyroid was 37 My minerals were all out of whack. I was a type one but no one paid attention. That's it. just kept getting sicker and sicker in the body pain. My rheumatologist said, Well, it's time to put you on bio meds. And I wholeheartedly believe that. Now that I have my thyroid at 2.7, which I'm very proud of, by blood sugar is you know, 100% in control that I'm willing to take the chance to pull the biomed out to see if the instability and everything else because if you do look it up, like you know, thyroid, being out of whack does cause you know, body aches and issues and your sugars being out of whack. Same thing, you know, your iron, I'm anemic. I'm autoimmune anemic, but now I'm not because I had an injection called Elsmere. By looks like maple syrup. That's what I call it's my Canadian juice. But um, it's, I get it once a year, and it brings my blood iron up. So I feel that nap. But everything's balanced. I'd kind of like to pull the biomed out just because of, you know, the research you do on no one really knows the long term effects on it. So yeah, once I started getting the weight gain and the skin conditions, I kind of started weighing myself, you know, the options like, you know, what's the better, I guess? And the skin conditions are horrible.

Scott Benner 21:07
Yeah, I think you're pointing out something that it's interesting, because you have so many different autoimmune issues. And a lot of these medications are newer, the way I would look at it, if I was you as I'm trying to make it alive as long as I can, right and be mobile, right. And so if I've got to do one thing here for three years, then do another thing over here for whatever I need to do to keep leaping forward on the calendar is is what I would do. Is that how you think of it? I do,

Carol 21:32
but I also look at the long term effect of what I'm doing at the same time. So the biomed, like I said, like, there's a lot of issues with leukemia and stuff. When you look at the long term effects, it does increase your cancer rates and stuff. And there is other unknown issues that they can't really prove, but they can't disprove because again, I mean, they don't really have enough information on the drug. And I'm not one to being a guinea pig. So once the skin conditions there to come up that no one could figure out no dermatologists no no one then that's when I was like, Okay, it's gotta go. And as soon as I stopped the biomed skin condition cleared up. Well, that makes sense. Yeah, I'm no doctor, but to me, I don't feel it was a bad decision yet. Like said I work hard. And I don't have any pain yet. They told me within a week, I'd regret it. And I'm on week five, and the only body pain I have is working good. I mean, like work hard, you know, I mean, so I expect the problem I found on the biomed is I wasn't hurting. And that kind of scared me also, because what is this hiding? me the way I work, I should feel some sort of, you know, muscle soreness. You mean like To me that's just normal? Because I'm working like Superman when I was not. Yeah, when I was not feeling anything. I was like, Okay, this doesn't seem really natural either at the same time, like, so. Yeah, I went cold turkey. No. biomed no Tramadol, no opioids, no nothing, just pure

Scott Benner 23:02
CBD. And you've you did use opiates,

Carol 23:04
like primitive medical marijuana patient for 12 years.

Scott Benner 23:08
So what's the relief you get from the medical marijuana? Well, it depends on how you

Carol 23:13
use it like I like kind of versed myself pretty good in it. So I kind of have a mixture between CBD and THC. So when I'm at work example right now, I smoke pure CBD. And the CBD and CBG helps with pain and inflammation. I swear by it like so I've been doing it 12 years. And then the THC. I had PTSD and bipolar depression so I find that the THC kind of helps level me out mentally because I don't take any you know, Ritalin or lithium or anything for that either. So I'm pretty functioning for someone who's technically really broken I guess.

Scott Benner 23:47
Yeah. So okay, hold on a second. How do you smoke CBD? Is that is that like part of the flower or what do you do?

Carol 23:54
I well, I order online like I have in Canada we do legal. So my medical plan thankfully covers my marijuana so my prescriptions for five grams a day so I can order online through cannabis dispensaries. And I have creams I have SAVs I have oil I eat I have pills. I take I have meat I smoke. I have vapes. I smoke. I've even got freakin facewash bodywash is like if if there's a product out there you can pretty much get it with CBD in it now. And CBD is is the byproduct that you can't get high. Like I could literally drink every bottle of oil I have in my house and I won't get stoned. I'll get sick, but I won't get stoned. Yeah. And a lot of people don't know the differences between them. That's why people think meat is so taboo. Just get high like you're in high school and that's it. But yeah, if you know the difference, there's a huge difference.

Scott Benner 24:48
So when you say smoke, CBD, is it with a vape or is it with fire or how do you do that?

Carol 24:54
Well I have my vape cartridges, which is like probably like a rosin oil that goes into like a battery. Hmm, it burns off that way. And then I'll just I have this flower that I can bust up and roll like a joint. Okay.

Scott Benner 25:06
Okay, I got it. Oh, I was going backwards here for a second. But do you have autoimmune hemolytic? Anemia?

Carol 25:15
Yes. The one where I bleed really easy. Yeah. How

Scott Benner 25:18
did they diagnose that? Well, it

Carol 25:21
was a pain doctor, actually, who diagnosed it again, right up, like before COVID started and I was kind of like, my body was melting down, I went to go see a pain clinic. And he told asked me what kind of blood work and stuff I've had. And I kind of explained to him, you know, not too much. But, you know, they told me I had this, this and this. And he asked me if I'd be willing to do a couple tests and stuff with them. And I was like, okay, and he did some blood work and some mobility tests and stuff. And there are certain factors in my blood. If you have the right doctor that they can they can see it. Okay, well, there's like my inflammation markers. I'm trying to think of the name for it, but there's like an acronym for it. That they watch those very often. When I was first diagnosed with ALS, my markers were 900. And now my markers are seven G's. Wow,

Scott Benner 26:12
I'm super impressed. That's the name

Carol 26:14
of it. It's your it's your GSR reading and that will tell you in your blood, the inflammation in your body. GSR.

Scott Benner 26:20
GSR.

Carol 26:22
Yeah. Okay.

Scott Benner 26:26
Okay. Wow. And you've figured all this out, just because you had to. So finding me was not a big surprise, because you found something for every one of your issues.

Carol 26:34
I did. But you were my problem solver for diabetes, because I hadn't had any, any real good information for diabetes. Yeah, like I said, when I was diagnosed, it was, you're an adult, you can figure it out, here's your insulin, have a great day. And it was very heartbreaking honestly, because I had no clue what to do. And I'm terrified of needles. So for the first six months until I bought my own pump, I had to get my spouse to give me insulin. So how I would warm up to it because he's military. So he was coming at me like it was saving my life at war with an epinephrine pen, like I almost had a stroke. So how I kind of got him to do it and not be so like I'm saving your life kind of thing like is I would take my insulin and my butt cheek. So as a man, you can understand this that when your wife comes up and goes time for my insulin and sticks a batik in your face, you can be like, okay, and you're gonna be a lot nicer. So that's how we kind of got through that learning. Carol,

Scott Benner 27:28
you succeed up your insulin time

Carol 27:32
to make it fun. I do terrified of needles like I I am absolutely petrified, like, I need an additive and just to get blood work, even for my biomed I take an Ativan before I would even take my biomed because I was that scared of needles. So the pump for me was a no brainer. You

Scott Benner 27:51
know, that really is scared because I've now used these these fuego V pens a countless times and there's nothing to it and they don't hurt. So you really are no, it's

Carol 28:00
not even hurt. It's just the fact I find it so unnatural, right? Stick myself with something. And a lot of it too, is where I grew up. Like, I grew up in the ghetto. And like, the low income area of my province kind of thing. So growing up, we had a lot of crackheads, like drug addicts and stuff. And to me, needles were addiction thing. So I was always unless my doctor was doing the blood work. I could never do anything myself. Because to me, in my head, it was this is horrible. You shouldn't be injecting yourself. Yeah. And it was just a fear I always had. So it kind of, yeah, I was 14 when I got diagnosed. So it was stuck with me for 40 years. Yeah.

Scott Benner 28:37
How old are you now? Like 44? Okay. Are you still taking steroid injections?

Carol 28:43
No, nothing.

Scott Benner 28:44
So you stop the vitamins and the steroids? Yep, everything. Okay. Arden just got a cortisone shot in her shoulder yesterday.

Carol 28:51
So they're bad. They spiked my blood sugar for three days. Yeah. So

Scott Benner 28:55
like, it was she's had Hold on a second. There's an Apache helicopter going by. Let's wait a second. What is happening? If this is it, Carol, I assume this is the Canadians on the phone together. I think this is the Canadians coming for us right now. Actually, they finally had enough. He tried to burn us out earlier in the year when that didn't work for this smoke. I guess now they're gonna send helicopters.

Carol 29:16
Well, we only got two. So you know, I mean, like, if you see one, there's only one more like our Canadian military isn't very promising. You see one, there's only one and if you see it seeping in the air, it's coming down

Scott Benner 29:28
like that. So I guess Arden had like the guy diagnosed her with like an impingement like I guess her like, off the top of her shoulders kind of pinching on a I don't know, I obviously I was in the appointment didn't pay that close attention. But but you know, there's ligament in there and once it hits it a couple of times it gets a little swollen then you get caught in a loop and you kind of can't get out of that loop anymore. So artists like you know, for years, she's like my shoulder always hurts and the other day I Kelly's like, look at her back and it was swollen like the muscle down the side of her spine was swollen. I was like, What the hell she was my shoulder really hurts. And I'm like, well, your back is swollen. So we kind of like, Oh,

Carol 30:11
my abs started just to warn you. You're what? My Ankylosing Spondylitis Okay, go ahead, tell me how it started as was with the swollen muscles down the sides of my back, my shoulders, my ribs, my knees, anything that was a socket joint, just one after another became unmanageable to the point where my hips hurt so bad that they were talking about a hip replacement. And it came down to having abs and it's it's an HL HLA B one I believe you check for for your, your antibody. Okay. Well, you know, usually if you have one autoimmune disease, you've got more for sure. And if I remember, right, does your daughter have thyroid and arthritis or something? You

Scott Benner 30:55
know, it's funny, I don't know about. Like, I couldn't tell you if she has arthritis or not, I tell you that seems to move with her hormone shifts. Like her wrists will be sore for a couple of days or her knee or something like that. But it's this shoulder thing was specific. It started we felt like it started when she was playing softball. And she stopped playing softball because she couldn't throw a ball anymore. And then, you know, they asked her to do PT and she did PT and it like, I don't know, didn't really do anything. And so then for years, she just kind of like deals with it. Like every once a month when her hormones go the wrong way. She's like, I just need somebody to rub my shoulder blah, blah, blah, but mostly she's, it's mad. It's manageable, but she says it hurts most of the time. So you should, you

Carol 31:45
should look up CBD and CBG you won't get your daughter Hi. I know people who give it to their five year olds for epilepsy and stuff. But I played sports. I was rugby and lacrosse. And I played it right up until I was 25. And I found that CBD was always way better than any pain that I ever took. It was easier on the stomach. I didn't have to take it long term. It was one of those I took it as I needed it. And again, you don't get high there's no side effects. No pharmaceutical worry issues that become a new paradigm

Scott Benner 32:19
Are they like different strength? Like, oh

Carol 32:21
yeah, you can get is like you can micro dose with it or else you work your way up with it. Okay, that's interesting. And yeah, like I said, I use it for my rheumatoid arthritis and everything like, and that's just like under your tongue oil. Well, you can take on your your tung oil, or else you can get into capsule. Oh, no kidding. You can actually make the capsules yourself if you buy the oil. And then you buy the empty capsules, you can fill your cat. So I did for a while. I was like pre filled my capsules. So I had them at work and stuff. Okay, you can get the empty capsules, usually through your pharmacy. That's super

Scott Benner 32:53
interesting. Oh, yeah, I'll definitely look. And I'll ask about the test too, because, but for the moment, like, you know, the guy did the X ray goes like, structurally there's no I don't see a problem in here. And he's like, so you have two options. We can do PT, or we can do like this cortisone shot, and then you can do some PT and strengthen everything around it. And Artem was like looking at me like because we talked about it for two days. She's like, I'm not getting a shot my shoulder. She just had it for two days, then, you know, like, we get in there. And I'm like Arden, listen, if it was me, I take the cortisone shot, just to see if this helps. If it helps, and then you know, really, this is not an autoimmune thing. And it's just your shoulder, then, like, why not take the help from the cortisone and we'll deal with the blood sugars. And, and then you can kind of like see where where this goes. It's at least it's an easy thing to try. And she did. And it was it was amazing. Because prior to the the injection, the doctors like lift your arms, like you know, they do all that stuff. And a couple of places like Arden couldn't even lift her arm of overhead. Like just oh my goodness. Yeah, like she could get it up and it would stop or she could put them out to her sides. But she couldn't raise it past her shoulder like like that. And he pops this cortisone and like, I'm not lying. I was I've never been so amazed by anything in my entire life. And he goes and works in minutes. Holy God, he's like, Okay, stand up, do this, do this, do this. And she lifts her arm and it shoots up over her head. And she actually like the look of surprise on her face was insane. Just so happened. She's like, how the hell did my arm go up in the air like that? And I was like, wow, and she goes, holy crap. That's crazy. So anyway, she's you know, that we're gonna see how she is.

Carol 34:35
I did the cortisone that I started getting into where I had to have it all the time. I would imagine it's you know, and that's why I kind of was like, okay, there has to be another solution for this

Scott Benner 34:45
returns. Yeah. So she just said like, it's weak. It's the the pain causes weakness. So she has the pain and then she the weakness kind of comes from it like that. But she said until he looked at her yesterday, she didn't recognize that her right arm was weaker than her left arm.

Carol 35:01
That's crazy. He's probably just she just grew with it over time. Never really.

Scott Benner 35:05
Yeah. So I'm interested to see what happens. But at the same time, next time she gets a blood test, I'll ask to look for this to get know, well,

Carol 35:11
I would not tell them to check like for HLA markers in general, because usually, usually, if you have type one, and thyroid from what I've learned, and you're having odd pains, that usually means that you have an umbrella, you know, something in there, and rheumatoid arthritis, ankylosing spondylitis and fibromyalgia sister and a lot with diabetes in general. Yeah.

Scott Benner 35:36
Okay. I know, we'll definitely do that. I just wrote it down. So that must mean I have to do it. No. mean what the hell? You know, they mean. I mean, we're in the same situation. You are like Arden's endocrinologist. She's with an adult endo now, but we're not in Canada, but I did the same thing. Like, Arden goes to a doctor who's a cash pay Doctor Who doesn't take our insurance? And then I mean, we can then submit it to our insurance, and we recoup actually, almost all of our money back, it's not the cost is any different. Yeah, we're just lucky with our insurance. But if I said that to this doctor, she'd be like, Yeah, let's do it. Okay, so, yeah, that's my

Carol 36:16
doctor. I'm lucky because I do the same thing to him. I'm like, you know, what's it gonna hurt? And I mean, like, if the test comes back negative, well, then we were wrong kind of thing. But he did it 10 times so far. In the past couple years. I'm usually I'm not always right, right. But then I get their brains thinking like, oh, well, let's try this now kind of thing, right? Find

Scott Benner 36:34
that too. Like you can kind of get the doctors to think about it.

Carol 36:40
Well, once they get past the fact that they can realize you're not there just for the drugs, because sadly, a lot of people are Yeah. And body pain is one of those. If you can play the card, right? You're gonna get what you want, because it's very hard to prove it right without checking your GSRs and stuff. And that takes time. So a lot of doctors will you know, give out Tramadol, we'll say which I started on Tramadol. And it's, it's your gateway. Let's put it that way. Because when I first started with pain, Tramadol was what they gave me. And then the Tramadol didn't work that much. So then they put me up. And then next thing, you know, now I'm on Dilaudid. And then I was on fentanyl. And then I was on oxys there for a while. And then when it started getting to the point where I felt like I was in the movie, and I was one of those addicts. I went to my doctor and I was like, okay, like, you know, this isn't working kind of thing. Like, I can't work. I can't function. They're like, Yeah, but you have no pain. I'm like, sure, but I can't work. And I can't function like this, to me isn't natural. And all they ever wanted to do was push more drugs, more drugs, more drugs. I've been called noncompliant, so much, that I think it's my middle name. And I guarantee you it's written right across the top of my file

Scott Benner 37:52
in big bold letters. And that's for not wanting to take pain pills. That's

Carol 37:55
for not wanting to take painkillers. Okay? Because it same as with my biometrics. When I told them I stopped taking them. He told me he will have me as a doctor anymore, because I'm going against his medical advice. But his solution for my skin problem that I know was caused by this biometric was, well, this particular drug is good for psoriasis. And maybe you have psoriasis. So let's double the drug and see what happens. That's the most uneducated thing I've ever heard

Scott Benner 38:23
in my life. Oh, he wanted to give you more of the biomed one even

Carol 38:27
more, because he's like, Well, you know, maybe you're just maybe you have psoriasis. And I'm like, no, like, this isn't psoriasis. We already went through that, like I had a biopsy done through a dermatologist, and everything came back non conclusive. Nobody could figure out what it was. And I was like, No, I'm not open for doubling my drug. And he's like, Well, you're going against my wishes. And I was like, Well, I told you, I would like to take a break. And that's when he said, if you're not going to listen to me, then I can't be your doctor anymore. So technically, I don't even have a rheumatologist because I took myself off the drugs. But

Scott Benner 38:59
would it hurt him to let you just jump off it for a little bit and see what happens? Well,

Carol 39:02
his issue with me is is I've already proved him wrong. So I think I kind of hurt his ego. So when I first started with the bio meds I started the bio this particular biomed after I got diagnosed with type one, not long after because he wanted to put me on it at the same time, and I was like, No, I have too many other fires burning. I'd rather put out some fires before I add another drug. You know what I mean? Like, I didn't want that much in my system kind of thing. So when I started the drug, it was a very it was questionable anyway, so it's like I had so many other issues that I still to this day believe that all those other issues were making my pain worse because I'm very active. So I know that I don't have as tissues from fusion. I have zero fusion in my body. My inflammation markers are back at seven. So you mean something changed somewhere so I I felt coming off the biomed the worst that's gonna happen is when I do my blood work in two weeks. Bye. CSR might be a little higher, but then to me, that would be the proof. I would need to say, okay, Carol, maybe you need to go back on this. Yeah. All I wanted to do was to go off, have a break, see if the skin cleared up and check my inflammation marker. And he wasn't willing to do that. So that started proving to me that $6,791 In injection every three weeks, I have to pay 10% that I feel on the cash cow.

Scott Benner 40:25
Oh, oh, he's making a little money off the whole thing. Someone's making

Carol 40:29
money. Somebody I know when a new like, when your solution for my problem that only started when I started this firmer drug is give me more that tells me someone's paying you. You're not caring about my health is or else you would be like, okay, Carol, I see what you're saying. Let's try something new. Yeah, interest, but instead he wanted to give me more. I'm kind of glad that we don't really, you know, we're not a doctor patient anymore. But the other issue you have in New Brunswick, for example, is we only have two and a half endos in this whole province. I say half because one doctor is an internal medicine doctor. He claims to be an endo, but she's not an endo. I know I've had her. And she doesn't like me. She doesn't believe in Pre-Bolus saying she doesn't. Yeah, she said Pre-Bolus thing is taboo. I just kind of looked at her like, huh, like and I kind of look I said, Okay, so you mean to tell me that? When I put insulin in my body? You think it works right away? He goes, Yeah, I said, but it doesn't. I said it goes through your skin like it has to absorb. I mean, you gotta give him time to work. And he goes, That's ridiculous. And I'm like, No, it's not. So to me, that told me that you're an internal medicine doctor, you're practicing medicine. You're not mastering medicine. You're still practicing. Because you'll know it. Yeah. Like, I just heard other solutions for diabetes was just I wasn't comfortable with it. It was always you know, we'll try this and I'll see in six months. Yeah. But then I never got a call. And then because of COVID it was, oh, well, we looked at your blood work and due to COVID We can't see right now. And I'm not vaccinate. It's like a big one up here. Like I'm like the ain't Christ up here. Okay. So, where I was on biomed I have so many autoimmune diseases. I was told you have to get vaccinated, you need like 17 doses or you're going to die. And I was like, okay, but my bio meds I was on when you look at the pamphlet, this is how I like this is why I have no trust in pharmaceuticals or medical. So when you look at the pamphlet on the biomed it says right on it. You can't take flu meds. I can't take antibiotics. I can't take vaccines. I can't take anything. But they want me to get vaccinated. That was like Nananana. So I held out. Well, I never caught COVID I never got sick, I worked the whole pandemic in trades. And I proved them wrong. So they don't like me. So my rheumatologist when it came to with him, I told him what the biomed. So I was like I said, the biomems are causing an issue with my diabetes. And he's like, Oh, you're ridiculous. I'm like, No, I'm not. I was like, before I started the biomed I only needed X amount of insulin. So now since the biomass, I need 30% more so either I'm sick, or something's causing a resistance. And he's like, no, no, no, no, no. So airoldi. And Carol does the research. I like it. And I'm very fortunate. My brother in law is a research doctor at one of the hospitals in the city. So I talked to him a lot. And he agreed with me that no your doctor is wrong. And those bio meds you know, there is cortisone and there is steroids and stuff in them kind of thing. And it will cause you resistance. So I went back into the doctor with the information from my brother in law, and he straight up told me I was wrong again. I'm like, wow. Looking at the proof, right? Like,

Scott Benner 43:45
I don't understand that you couldn't go to a doctor and say, hey, look in the package insert for this medication I take it says for me not to take a vaccine. So

Carol 43:54
yeah, but Dr. Trudeau so I had an exemption, they gave me an exemption. So I wasn't, you know, forced to be vaccinated. And then or darling Sackboy Premier, their pre a prime minister there decided that on September 28 of 2021, he was canceling all medical exemptions. So pretty much in Canada, you get vaccinated. And if the vaccine doesn't kill you, then you get a second dose. That's how it works out here. What's nice, yeah, tell me about it. I wasn't able, wasn't able to work at because up till September 28. I had this exemption. So I was allowed on the law job sites and stuff because we do a lot of government work. So in order to be on a government site, even today, no, I said you have to be vaccinated, right. So I had this exemption, and then September 28 came in my exemption was null and void. So I had told my boss I can't come into work. And we were joking about it. I was like, but I can call buddy up on the reserve there and I can get a fake vaccine passport if you want. I can just carry it in my wallet. Because up here it's just a piece of paper right like frickin 12 Euro can make you one and week out, laughed and joked about it and stuff. Nice But now he goes, you hold your ground, and you still get to be vaccinated. And Carol is still working. So so far I'm winning. Because up here we have such a shortage in labor. Well, you can fire me. Yeah. I mean, you need me like

Scott Benner 45:15
the ban on the exemptions get lifted, or does that still exist? It still exists. Okay.

Carol 45:20
Yeah, they backed off a bit on the force of it to a point but not really. And it's not the nominee anti Vaxxer. Like everybody's like, Oh, you know, you just don't believe in science. Oh, I believe in science, like I, you know, you're

Scott Benner 45:35
also holding a package and says, it's telling me not to do this. So

Carol 45:38
Exactly. Yeah. Because before I couldn't get a flu shot, I couldn't use it. So how it came down to another one of those money. I mean, like, if you cared about my health, you'd follow my exemption, and you follow my doctor's orders. But it got so bad up here that even my, my doctor told me, he goes, I know you're right. But if I tell you, you're right, I'll lose my job.

Scott Benner 46:01
It's a weird system. I guess the way it runs up

Carol 46:04
here. It's horrible. Like, I don't know if you've even paid like, if you pay attention to how Canada is going right now. But we can't even see your own news. You can see who decided he made this Bill C 18. So now he expects Facebook, and Google and everybody to pay the government, for us to share our local news. So if I want to go on Facebook and share an article, I'm not allowed as Facebook because our Canadian government expects Facebook to pay the government for the the ability to share Canadian news. And now Trudeau is getting mad at Facebook, because they're not following suit. He's like you're making billions of dollars off of you know, Canadian content. No, they're not. I don't know anything. That's their business. It's not up to you. It's so broken up here. I

Scott Benner 46:57
don't know about your politics. But I can tell you what being Prime Minister's made him look really old pretty quickly.

Carol 47:02
Yes, that's because of his five vaccines, probably. And all the stress he's going through.

Scott Benner 47:08
He was so handsome when he started.

Carol 47:10
Yeah. And then he opened his mouth and he got really ugly. That's

Scott Benner 47:14
crazy. Okay, so we have I'm looking through your whole thing. In we still like, this is just kind of a check back in from you since your other episode. So like, I first of all, I was really thrilled to hear how well you're managing your thyroid stuff. Because when you tell that story about having a TSH in the 30s I can't even wrap my head around how terrible you must have felt like with

Carol 47:43
that, I felt like death. Like I don't even like know how else to describe it. Besides, I went into my doctor, and I pretty much threw my medical insurance, my health card in my wallet on the counter. And I said, whatever it takes fix me. Like, I can't keep living like this. And they finally took me seriously but my thyroid didn't get diagnosed until I went into DKA. It had to be horrible. It was kind of one of those when I hit the hospital, they were like, Oh, by the way, you know, you have type one diabetes and you have you know, I think it's Hashmi knows where my thyroid stays high. Hashimotos Yeah, Moto Yeah. And I was just like, wow, like and this was things I had been, you know, wondering about but yeah, it was, I didn't know how to describe besides saying that. I felt like I was gonna die like my chest because I always felt like I had like pneumonia. And my body like, I was walking like Mr. Burns, if that makes sense. Like I just couldn't straight Nope, because everything was so sore. That it just yeah, like and then once my thyroid came down, like, oh my god the difference like it's crazy.

Scott Benner 48:49
It's such a tiny little thing. And it just,

Carol 48:51
I lost so much weight like I was to the point where like, I was unhealthy looking at my skin was almost GRAY Like it was oh, like I never wanted to go back

Scott Benner 49:01
there. Yeah. And now you just take a Synthroid. Yeah,

Carol 49:05
I take the largest pill, you can take the two milligram. Wow. And I guess it's not ever stops working. And my TSH goes back up. I have to get my wings clipped on my thyroid. Yes. paraphonic grandmother had it done like back in like the 60s kind of thing really told me that it's Yeah, and I didn't learn about that until after I was diagnosed because I I was raised by my grandparents. So I was very young when they passed. So I don't really remember like a whole lot kind of thing. So when I got sick, thanks to Facebook, I put out a post and one of my aunts came back to me and he's like, Yeah, your grandmother had that. That was like, Oh, I remember the scar on your neck. But he smoked two and a half packs of cigarettes a day. So I mean, like that might be tracheotomy or something at one point like I wasn't never really. I'd had thyroid disease about that. So she had her like, I don't know my father. So like I own We really have one side of my bloodline I can really explore. So,

Scott Benner 50:04
yeah. So do you think she had like her parathyroids removed?

Carol 50:08
That's my aunt's. And my aunt said that she pretty much had almost her whole thyroid removed.

Scott Benner 50:12
No kidding. Yeah, something.

Carol 50:15
Right. And that was the only way I guess back then that they pretty much controlled thyroid diseases, they would clip your thyroid back. Like you would go in and they would clip off a bit and see how it works. If that didn't work, they take a little bit more and

Scott Benner 50:29
kind of go that way. Does not seem technical at all. Does that count? Not at all? No, I'm

Carol 50:34
kind of glad that medicine has COVID Since

Scott Benner 50:40
the way you were saying that I was like, oh, god that probably they were probably like, just tried this piece. Let's see what happens. I got my

Carol 50:46
uncle who was diagnosed with cancer in the 50s. He had it in his foot. And all they did was just keep cutting back then. So they cut off his foot. And they didn't know what they were doing back then. So obviously there was a little bit less than it came back. So then they cut him off to the knee. And then a year and a bit later, they cut them off at the hip. And then he still ended up passing away. It's seven and a half years old. But that was what they did in the 50s. For Yeah. I mean, I'm very glad that medicine has evolved. I just wish I could access it. Yeah, I mean,

Scott Benner 51:16
honestly, you are a great example, obviously. But without these medications, you would be crinkled up in a ball right now on my upset. Yeah, pile on painkillers. Yeah, yeah. That's something Jesus wins your first I know, we probably went over this the other episode, but when was your first medical condition?

Carol 51:34
My first mental medical condition was a condition called beuliss pemphigoid. It's actually an autoimmune disease. It's a skin condition. And it causes like, big blisters and stuff on your skin. A lot of the time they think it's a back in the 80s. I told my grandparents, I had herpes, I had scabies. I told them I had HIV. And then eventually they deemed it down to this beuliss pemphigoid. But that was my first one. And I was in grade three. Wow. So when you were and then after that I was in high school and I got diagnosed with anemia. I was in grade 10 I passed my playing rugby. And they thought I just got hit. And I had like a concussion and come to find out that my iron was so low that I was pretty much borderline have a blood transfusion. Okay. And then that was number two. And then after that it just like honestly, some of them I don't even know if I have my thing. Sometimes I just pulled the name of the hat and went well, we'll go with this one this month and see what happens. Because as I kind of fixed other stuff, like I've never felt better than I do today. And I barely take any medication. So I'm tempted one day to try and find another doctor when we have more and actually get properly retested instead of by a doctor who's making money off of me. But um, yeah, I think that I think the 11 I have on paper. I think about three or four of them were misdiagnosis is of other things because they told me I had diabetes for years. Like after my pain doctor, actually very smart man walked through my past blood works. And he was like these blood works. We're fasting blood works Did you eat before you went? And I'm like, No, why would I eat? He said, Well, your blood sugar was 9.5 at seven o'clock in the morning. I'm like, No. And then he was like, suddenly started looking more and more. And he's like, honestly, Carol, he's like, I think you've been diabetic a while. But I've worked treats my whole life. So yeah, he's like, I think your job is what kept you undiagnosed. Because what got me so sick was COVID when COVID first started, the world shut down. So I wasn't able to work. He stopped moving. And I stopped moving. Yeah, I wasn't allowed to go out. I was I wasn't allowed in the woods on my four wheeler. I mean, we were very like you guys were very all locked up for a while. Yeah. And Tick Tick, tick tick tick tick tick to me it just kept going. And he swears that me stopping working is what brought it out but he's like if coping with it happened. He's like you're so active. He's and you probably want to live like this for another five plus years might not even notice for a while. Yeah, he said you've probably he said looking back because he could only go back five years on my bloodwork. And all my blood work was the same this whole five years. When I was pregnant with my children. My blood work was high and they just again contributed to she's pregnant. She probably ate. Like he said I had gestational diabetes with both my last two children. It was just missed because I didn't look diabetic. And yeah, how are your kids? My kids are great. I did the trial net with all three of them. Not one of them has the marker. My killed I have a grandson too. He has no markers. My kids are 2518 and almost seven. And all three of them are super healthy. My middle daughter is on Team Canada for cheerleading my son's in trades themselves. And I find that they take better care of themselves after watching what I went through and seeing how taking better care of yourself has helped me being even though I'm so sick Yeah, like I make my own everything because I don't trust food anymore. So like I make my own butters, Manos yogurt, sour creams, anything I can make because I find everything from the store has so much added sugar. And it's not on the label. No,

Scott Benner 55:13
I mean it getting clean food is I think it's really important. I don't know. Yeah. Or

Carol 55:20
three and a half hours out of the closest major city and we bought since I talked to you we bought a homestead in the middle of nowhere is in New Brunswick. I grow all my own food. I have chickens. I have a pig. I've got turkeys meat birds. Like I'm pretty much almost right now. And like I said, I've never felt better.

Scott Benner 55:38
Wow. Good for you. That's wonderful. Really is your rotation

Carol 55:41
tells me I'm crazy. But it's okay. Like you're crazy.

Scott Benner 55:45
Are you you're at work right now, right? Oh, yeah. Yeah. Fantastic. I don't know. I think you're terrific. I'm so glad you came back. Are we missing anything? As far as an update goes, I feel like we hit the things

Carol 55:57
that like since I talked to you pretty much I just keep. I had relisted two more times, because I made a post there when I was really low at work. And the lady that helps you out her name begins with why amazing lady. She directed me to a couple of podcasts I'd forgot. And those podcasts are what tweaked it around so that I don't go low at work anymore. And then there was another guy in your group who's in trades like me, who's a type one and me and him kind of started passionately, you know, tricks help each other out kind of thing. And honestly, no, thanks to health care. But yeah, I'm doing amazing.

Scott Benner 56:30
Isabelle helped you. That's her name. Yeah, she's JDRF.

Carol 56:34
Up here for New Brunswick, we actually fought. I think I made a poster actually on the group there a couple of months ago, where our provincial government is now covering all type one supplies, CGM pumps, it doesn't matter your age anymore. Before it was when you hit 18, you were on your own. And now, as long as you're not making, you know, crazy amounts of money, the province actually helps you now. Good for you. That's terrific. I have a reserve next to me where I help a lot. Unfortunately, the reserves have a lot of type two diabetics up here. And it's sadly because of the way people are forced to eat because of the cost of living up here. Yeah, I helped build type twos with the staff in which I've learned from you and pretty much a lot of them now have learned proper eating and how to use insulin is even on type twos. No one really teaches them anything. They just kind of give them the, you know, the 10 units a meal and pray pretty much and

Scott Benner 57:27
yeah, yeah. No, I, when Jenny and I made the type to Pro Tip series, I said, like I said, Jenny, I'm like, this is gonna, like I think this is so important. You know, I know what to type on podcast, and some people aren't going to download it. I was like, but there's so many people who know other people. And this is not the kind of thing it's not the kind of information they go out and look for. So I said, I think just

Carol 57:48
my mom's and type two. Yeah. But honestly, I believe my mom is like me, like, I know my real mom. And he has horrible health. And he's had type two diabetes, according to her doctor since he was in her 20s. And she just turned 60. And no matter how much Metformin she takes How much ozempic She takes, how much insulin she takes, he keeps gaining weight, everything keeps getting worse. She's to the point. Now she's in Stage Five, kidney failure, oh my gosh. And it's all because of her diabetes management. She won't listen to me. I've tried helping her, but he's the one that my doctor never told me. So it's kind of sad at the fact that I could, if she would listen, it could help but she's abused herself so long that he's beyond help. They won't approve of her transplant. They won't approve her for dialysis, because they told her where she can't monitor her blood sugar that they don't trust her with a carry dialysis machine. So she can do it at home. But I believe that my mom is allowed to like me, but she won't go to her doctor and get the test.

Scott Benner 59:00
I people just

Carol 59:01
watching her and stuff like and seeing seeing how she does things. And you know what she does if she was tight, too, it should work. But it doesn't work. And where I have a ladder? I believe it's hereditary from what I've learned came from somewhere.

Scott Benner 59:17
Yeah, I would just I wouldn't think so that eventually the lot of would just get to type one. I think it would, it seems uncommon for me for her to live that many.

Carol 59:26
My doctor told me he said ladder. It does. It is type one it just all it is is your body took longer to react. Yeah, I

Scott Benner 59:34
mean, all the way to like boom, like you'd need insulin where you're dead. Like, it's I don't know, like, I don't know if I've ever heard anybody living with a lot of that long. Not to say that it couldn't happen, I guess but I just I've never heard that before. It just sucks that How old is she? 60. Yeah, that's too young to not like

Carol 59:53
120 units of insulin in total a day

Scott Benner 59:58
and eating Yeah, and she's on Metformin.

Carol 1:00:01
Yep, 1000 milligrams of metformin. Is that all I know, is

Scott Benner 1:00:06
that is that an insulin need? Or is she eating in a way that's supporting that insulin need as well? Oh,

Carol 1:00:11
no, she doesn't. He doesn't dose right, because no one's ever taught her. So he just does what her doctor tells her to do 10 units every meal, and then she eats whatever she wants. Yeah, that's what they told her to

Scott Benner 1:00:23
do. Yeah, I think that really is the kind of unspoken plan, like just will just keep them going. As long as they're setting people up for disaster, ya know, for sure. But I think that's, I think that's what they're doing. Like, I think they, in some situations, people just don't understand. And they, they look at you like, well, you're on the path of destruction now. So we'll just slow down that travels best we can. And at the end, you'll crash into the end of it and die from something from this type two diabetes.

Carol 1:00:54
It kind of makes my mother very depressed and hateful at me too, because I get diagnosed way later than her. And I fixed myself if she hates me, for it calls me to show off. Yeah. You're either diabetic, and I'm like, I'm positive. Like, I wear a pump. Like I know. I'm diabetic. I just She really does. Kind of thing. Yeah, like when I'm at her house, or she's at my house. She gets mad at me because the wants something. I'm like, take your insulin. He's like, Yeah, I'm like, I'm not giving you anything until you take your insulin like I have to treat her like a child and it sucks. But I can't let her do that in front of me.

Scott Benner 1:01:31
Yeah, it's hard to say we mean like, yeah, we spoke a lot about your family and the other episode, right? Yeah, yeah. Yeah, it's not. You didn't grow up with the Brady Bunch?

Carol 1:01:40
No, no. Oh, God, no. Yeah. My grandfather were the World War Two vet, and he believed in capital punishment. So yeah. I am 44 years old, and I do not drink. I've never been drunk because of my grandfather. Because

Scott Benner 1:01:56
that's how scared you were in Canada. You didn't drink. That's crazy.

Carol 1:02:01
Smoke lots of weed, but I never drink in the back of my head at 44 I still hear my dad, if I catch you, I'm gonna kick your

Scott Benner 1:02:08
ass. And I just, I had a conversation with a person in their 50s recently, and I asked them if they ever considered smoking weed. And that person said no. And I said why not? And probably for the same reason. They said I I just think it would my parents would feel let down a person in their 50s concerning me with drinking. Yeah, concerned about their parents in their 70s probably the end of their life almost, you know, even maybe older is what I'm saying. And my

Carol 1:02:36
grandfather is even alive. He died when I was 21. And I'm still terrified. He's gonna come haunt me if I drink. Yeah,

Scott Benner 1:02:42
no, that's really interesting.

Carol 1:02:44
Like, because fear

Scott Benner 1:02:46
works. Oh, my gosh. All right, Charles, I could talk to you forever, but I'm gonna let you get back to work. I appreciate you spending this hour with me very much. And coming back and filling everybody in. Like I said before, thanks for the checkups. Oh my god, Carol was on episode 586. It was called body fire. And you should check it out. Thank you hold on one second for me.

I want to thank the ever since CGM for sponsoring this episode of The Juicebox Podcast and invite you to go to ever sent cgm.com/juicebox to learn more about this terrific device. You can head over now and just absorb everything that the website has to offer. And that way you'll know if ever sense feels right for you ever since cgm.com/juicebox. Jalen is an incredible example of what so many experienced living with diabetes. You show up for yourself and others every day, never letting diabetes define you. And that is what the Medtronic champion community is all about. Each of us is strong and together, we're even stronger. To hear more stories from the Medtronic champion community or to share your own story visit Medtronic diabetes.com/juicebox And look out online for the hashtag Medtronic champion. Thank you so much for listening. I hope you enjoy my full conversation with Jalen coming up in just a moment. The diabetes variable series from the Juicebox Podcast goes over all the little things that affect your diabetes that you might not think about. Travel and exercise the hydration and even trampolines juicebox podcast.com Go up in the menu and click on diabetes variables. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community check out Juicebox Podcast type one, two Diabetes on Facebook. Thanks for hanging out until the end. Now you're going to hear my entire conversation with Jalen don't forget Medtronic diabetes.com/juice box or the hashtag Medtronic champion on your favorite social media platform. My

Speaker 1 1:05:15
name is Jalen Mayfield. I am 29 years old. I live in Milwaukee, Wisconsin, where I am originally from Waynesboro, Mississippi. So I've kind of traveled all over. I've just landed here in the Midwest and haven't left since. Nice.

Scott Benner 1:05:30
How old? were you when you were diagnosed with type one diabetes?

Speaker 1 1:05:32
I was 14 years old when I was diagnosed with type one diabetes

Scott Benner 1:05:36
15 years ago. Wow. Yes. Okay. 14 years old. What do you like? Do you remember what grade you were in?

Speaker 1 1:05:41
I actually do because we we have like an eighth grade promotion. So I had just had a great promotion. So I was going straight into high school. So it was a summer, heading into high school

Scott Benner 1:05:50
was that particularly difficult going into high school with this new thing? I

Speaker 1 1:05:54
was unimaginable. You know, I missed my entire summer. So I went, I was going to a brand new school with, you know, our community, we brought three different schools together. So I was around a bunch of new people that I had not been going to school with. So it was hard trying to balance that while also explaining to people what type one diabetes was,

Scott Benner 1:06:15
did you even know? Or were you just learning at the same time, I

Speaker 1 1:06:18
honestly was learning at the same time, my hometown did not have an endocrinologist. So I was traveling almost over an hour to the nearest you know, pediatrician, like endocrinologist for children. So you know, I outside of that I didn't have any type of support in my hometown.

Scott Benner 1:06:35
Was there any expectation of diabetes? Is somebody else in your family have type one? No, I

Unknown Speaker 1:06:40
was the first one to have type one in my family.

Scott Benner 1:06:42
And do you have children? Now?

Unknown Speaker 1:06:44
I do not know.

Scott Benner 1:06:45
Do you think you will one day, still

Speaker 1 1:06:47
thinking about it? But right now, I've just been traveling books at all my career myself. So

Scott Benner 1:06:52
what do you do? What's your career? Yeah, so

Speaker 1 1:06:54
I am a marketing leasing specialist for a student housing company. So we oversee about 90 properties throughout the US. So I've been working for them for about eight years now. And you get to travel a lot in that job. Yes, I experienced a lot of travel. It's fun, but also difficult, especially with all your type one diabetes supplies, and all your electronics. So it's a bit of a hassle sometimes.

Scott Benner 1:07:16
What do you find that you absolutely need with you while you're traveling? diabetes wise,

Speaker 1 1:07:21
I have learned my biggest thing I need is some type of glucose. I have experienced lows, whether that's on a flight traveling, walking through the airport, and I used to always experience just being nervous to ask for some type of snack or anything. So I just felt, I felt like I needed to always have something on me. And that has made it my travel a lot easier.

Scott Benner 1:07:43
So growing up in the small town, what was your initial challenge during diagnosis? And what other challenges did you find along the way?

Speaker 1 1:07:53
Yeah, I think the initial one, I felt isolated, I had no one to talk to that it was experiencing what I was going through, you know, they were people would say, Oh, I know, this is like hard for you. But I was like, you really don't like I, I just felt lonely. I didn't know you know, people were watching everything I did. He was like, You can't eat this. You can't eat that. I felt like all of my childhood had been you know, I don't even remember what it was like for life before diabetes at this point, because I felt like that's the only thing I could focus on was trying to do a life with type one diabetes,

Scott Benner 1:08:28
when you found yourself misunderstood? Did you try to explain to people or did you find it easier just to stay private?

Speaker 1 1:08:35
I honestly I just held back I didn't really like talking about it. It was just it felt like it was just an repeating record where I was saying things and people weren't understanding it. And I also was still in the process of learning it. So I just, you know, kept it to myself didn't really talk about it when I absolutely had to,

Scott Benner 1:08:52
did you eventually find people in real life that you could confide in? I

Speaker 1 1:08:57
think I never really got the experience until after getting to college. And then once I graduated college, and moving to an even bigger town, that's what I finally found out was people were I was like, Okay, there's a lot of other people that have type one diabetes. And you know, there's a community out there, which I had never experienced before, is college

Scott Benner 1:09:18
where you met somebody with diabetes for the first time or just where you met more people with different ways of thinking.

Speaker 1 1:09:24
So I met my first person with diabetes, actually, my freshman year of high school, there was only one other person and he had had it since he was a kid like y'all once this was like, maybe born or like right after that timeframe. So that was the only other person I knew until I got to college and I started meeting other people. I was a member of the band and I was an RA. So I was like, Okay, there's, you know, there's a small handful of people also at my university, but then, once I moved to I moved to St. Louis, and a lot of my friends I met were like med students and they were young professionals. And that's where I started. Really getting involved with one of my really close friends to this day, he was also a type one diabetic. And I was like, that's who introduced me to all these different types of communities and technologies, and which is really what helped jumpstart my learning more. And with type one diabetes.

Scott Benner 1:10:15
Do you think I mean, there was that one person in high school, but you were young? Do you really think you were ready to build a relationship and around diabetes? Or did you even know the reason why that would be important at the time?

Speaker 1 1:10:26
I didn't know you know, I honestly didn't think about it, I just was i Oh, there's another person in my class that's kind of going through the same thing as I am. But they've also had it a lot longer than I have. So they kind of got it down. They don't really talk about it. And I was like, Well, I don't really have much to, like, connect with him. So sorry, connect with them all. Yeah,

Scott Benner 1:10:46
no. So now once your world expands as far as different people, different backgrounds, different places in college, you see the need to connect in real life, but there's still only a few people, but there's still value in that. Right?

Unknown Speaker 1:10:58
Correct.

Scott Benner 1:11:00
What do you think that value was at the time?

Speaker 1 1:11:02
I think it was just what making me feel like I was just a normal person. I just wanted that. And I just, I needed to know that. Like, you know, there was other people out there with type one diabetes experiencing the same type of, you know, thoughts that I was having.

Scott Benner 1:11:17
When were you first introduced to the Medtronic champions community? Yeah.

Speaker 1 1:11:22
So about two years ago, I was, you know, becoming more I was looking around and I noticed stumbled upon the Medtronic community. And I was like, this is something I really, really, I kind of need, you know, I said, I, all throughout these years, I was, you know, afraid to show my pump. You couldn't, I would wear long sleeves, like, didn't want people to see my CGM, because I didn't want people to ask me questions. And you know, I just felt so uncomfortable. And then I noticed seeing these people really, in the Medtronic community just, they embraced it, you can see and they weren't afraid to show it. And that was something I was really looking forward to.

Scott Benner 1:11:57
How was it knowing that your diabetes technology is such an important part of your health and your care? And having to hide it? What did it feel like to have to hide that diabetes technology? And how did it feel to be able to kind of let it go,

Speaker 1 1:12:10
I will refuse to go anywhere, like, Hey, I would run to the bathroom, I just didn't want to do it in public, because I felt like people were watching me. And that was just one of the hardest things I was trying to overcome. You know, I was fresh out of college, going into the professional world. So you know, going out on work events and things like that. I just, I just didn't think I just didn't think to have it out. Because I was so afraid. But then, once I did start, you know, embracing again and showing it that's when the curiosity came and it was actually genuine questions and people wanting to know more about the equipment that I'm on, and how does this work? And what does this mean? And things like that, which made it kind of inspired me? Because I was like, Okay, people actually do want to understand what I'm experiencing with type one diabetes.

Scott Benner 1:12:55
What did you experience when, when the internet came into play? And now suddenly as easy as a hashtag, and you can meet all these other people who are living with diabetes as well? Can you tell me how that is? Either different or valuable? I guess, compared to meeting a few people in real life?

Speaker 1 1:13:12
Absolutely. I think if you look back from when I was first diagnosed to now, you, I would have never thought of like, you know, searching anything for someone with, you know, type one diabetes. And now it's like, it's all I see, you know, you can easily search Medtronic champions, and you see people that pop up, and you're like, wow, look at all this content. And I think that's something that that kind of just motivates me, and which is how I've kind of came out of my shell and started embracing more and posting more on my social media with about, you know, how I live with type one diabetes. And I think that's something that I hope can inspire everyone else. What

Scott Benner 1:13:47
was it like having more personal intimate relationships in college with type one?

Speaker 1 1:13:51
I think it was kind of hard to explain, you know, just, for example, like, no one really knows, it understands like what alo is. And I think that was a very hard thing for me to explain, like I, you know, it can happen in a in a moment, and I'm sweating. I'm just really like, not all there. And I'm trying to explain like, Hey, this is what's going on, I'd need your help. And I think that was something that was hard for me to, you know, I did talk to people about it. So when this happened, they were like, oh, you know what's going on with your mate? I'm actually a type one diabetic. This is what's going on.

Scott Benner 1:14:26
I need your help. What about once you've had an experience like that in front of someone? Was it always bonding or did it ever have people kind of step back and be maybe more leery of your relationship? After

Speaker 1 1:14:42
I would tell someone I had type one diabetes after some type of regenerate damage, they were kind of more upset with me that I didn't tell them up front. Because they really you know, I care about you as a person I would have loved to knowing this about you. It's not anything you should have to hide from me. And that was a lot of the realization that I was going through with a lot of people.

Scott Benner 1:14:59
Okay, Hey, let me ask you this. So now we talked about what it was like to be low, and to have that more kind of emergent situation. But what about when your blood sugar has been high or stubborn? And you're not thinking correctly, but it's not as obvious maybe to you or to them? Yeah.

Speaker 1 1:15:14
So I also I go through my same experiences when I have high blood sugars, you know, I can tell like, for my co workers, for example, I didn't really talk to you know, when I go out backtrack, when I visit multiple sites for work, I usually don't announce it. And so sometimes, I'm working throughout the day, I might have snacks, forgot to take some insulin, and my blood sugar is running high, and I'm a little bit more irritable, I'm all over the place. And I'm like, let me stop. Hey, guys, I need to like take some insulin, and I'm sorry, I'm not I didn't tell you guys. I'm a diabetic. So you may be wondering why I'm kind of just a little bit snippy, you know, so I like to make sure I do that now going forward, because that's something I noticed. And it was kind of hindering me in my career, because I was, you know, getting irritable, because I'm working nonstop. And I'm forgetting to take a step back and focus on my diabetes,

Scott Benner 1:16:04
right? Hey, with the advent of new technologies, like Medtronic, CGM, and other diabetes technology, can you tell me how that's improved your life and those interactions with people?

Speaker 1 1:16:15
Yeah, I can. I feel confident knowing that it's working in the background, as someone and I've always at least said it, I have been someone that's really bad with counting my carbs. So sometimes I kind of undershoot it because I'm scared. But it allows me to just know that, hey, it's gonna it's got my back if I forget something, and I think that allows me to have a quick, have a quick lunch. And then I'm able to get back into the work day because it's such a fast paced industry that I work in. So sometimes it is easy to forget. And so I love that I have that system that's keeping track everything for me.

Scott Benner 1:16:49
Let me ask you one last question. When you have interactions online with other people who have type one diabetes, what social media do you find the most valuable for you personally? Like? What platforms do you see the most people and have the most good interactions on?

Speaker 1 1:17:05
Yeah, I've honestly, I've had tremendous interactions on Instagram. That's where I've kind of seen a lot of other diabetics reach out to me and ask me questions, or comment and be like, Hey, you're experiencing this too. But I've recently also been seeing tiktoks And, you know, finding on that side of it, I didn't, you know, see the videos and upload videos, and I might, I would love to do stuff like that, but I just never had the courage. So I've seen people make like just a fun engagement videos now, which I love, you know, really bringing that awareness to diabetes.

Scott Benner 1:17:35
Isn't it interesting? Maybe you don't know this, but there's some sort of an age cut off somewhere where there is an entire world of people with type one diabetes existing on Facebook, that don't go into Tik Tok or Instagram and vice versa. Yeah. And I do think it's pretty broken down by, you know, when that platform was most popular for those people by age, but your younger people, I'm acting like, I'm 100 years old, but younger people seem to enjoy video more.

Speaker 1 1:18:01
Yes, I think it's just because it's something you see. And so it's like, and I think that one thing, and obviously, it's a big stereotype around diabetes is you don't like you have diabetes. And that's something I always face. And so when I see other people that are just, you know, normal, everyday people, and I'm like, they have type one diabetes, just like me, they're literally living their life having fun. That's just something you want to see it because you don't get to see people living their everyday lives with diabetes. And I think that's something I've really enjoyed.

Scott Benner 1:18:31
What are your health goals? When you go to the endocrinologist, and you make a plan for the next few months? What are you hoping to achieve? And where do you struggle? And where do you see your successes,

Speaker 1 1:18:41
I'll be honest, I was not someone who is you know, involved with my diabetes, I wasn't really focused on my health. And that was something that, you know, you go into an endocrinologist and you get these results back. And it's not what you want to hear. It makes you nervous, it makes you scare and so I personally for myself, you know, I was like, This is my chance. This is my chance to change. I know there's people that are living just like me, everyday lives, and they can keep their agencies and their blood sugar's under control. How can I do this? So I go in with, you know, I would like to see it down a certain number of points each time I would love for my doctor to be like, Hey, I see you're entering your carbs. I see your, you know, you're not having lows. You're not running high too often. That's my goal. And I've been seeing that and that's what motivates me every time I go to the endocrinologist where I don't dread going. It's like a an exciting visit for me. So you'd like

Scott Benner 1:19:30
to set a goal for yourself and then for someone to acknowledge it to give you kind of that energy to keep going for the next goal.

Speaker 1 1:19:37
Yeah, I feel as a type one diabetic for me, and it's just a lot to balance. It's a hard our journey. And so I want someone when I go in, I want to be able to know like, Hey, I see what you're doing. Let's work together to do this. Let's you don't want to be put down like you know you're doing horrible you're doing it's just it's not going to move Ah you because it's your you're already fighting a tough battle. So just having that motivation and acknowledging the goods and also how we can improve. That's what really has been the game changer for me in the past two years.

Scott Benner 1:20:14
Jaylen, I appreciate you spending this time with me. This was terrific. Thank you very much.

Unknown Speaker 1:20:18
Absolutely. Thank you.

Scott Benner 1:20:20
If you enjoy Jalen story, check out Medtronic diabetes.com/juice box. 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.

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#1156 After Dark: Irish Goodbye

Katherine was diagnosed with type 1 at seven years old and felt extremely isolated. WARNING: Self harm is mentioned.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android  -  Radio Public, Amazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT

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

Scott Benner 0:00
Hello friends and welcome to episode 1156 of the Juicebox Podcast

Welcome back this is another episode in the after dark series Kate was diagnosed with type one diabetes when she was seven. She is now 38. In my notes to myself, I described Kate's parents as unpleasant. You're going to hear all about it. Kate felt isolated as a child she suffered from depression and there is much more to her story. There's also mentions of self harm, so please be aware. Please don't forget 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 health care plan or becoming bold with insulin. 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 type one diabetes research needs you t one D exchange.org/juice box US residents only you can be a type one or the caregiver of one. The survey will take you about 10 minutes you're very much going to help people with type one diabetes likely going to help yourself and definitely going to help me t one D exchange.org/juicebox. Go take that survey please 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 one.com/juicebox. This episode of The Juicebox Podcast is sponsored by us med U S med.com/juice box or call 888721151 for us med is where my daughter gets her diabetes supplies from and you could to use the link or number to get your free benefit check and get started today with us MIT. This episode of The Juicebox Podcast is sponsored by the ever since CGM and implantable six month sensor is what you get with ever since. But you get so much more exceptional and consistent accuracy over six months, and distinct on body vibe alerts when you're high or low on body vibe alerts. You don't even know what that means. Do you ever since cgm.com/juicebox Go find out

Kate 2:37
I am kit. I am from Northern Ireland and I have been diabetic for 31 and a half years give or take.

Scott Benner 2:46
How old are you? Okay.

Kate 2:49
I want you to mine. I'm 31.

Scott Benner 2:52
Well, so you were just seven? Well, you were diagnosed. I was Wow. That's crazy. That's a long time ago to in the 90s

Kate 2:58
is a long time. Yeah. 92.

Scott Benner 3:02
I'm just going to put this in here for everybody listening. Kate is in Northern Ireland. I am in New Jersey. And we're having the tiniest bit of gap in when we're talking. So we're going to try not to talk over each other. But if you hear that once in a while we're doing our best. Ireland needs better internet. I don't know.

Kate 3:21
I mean, it does.

Scott Benner 3:22
Okay, that's a fair statement. Okay, so what do you remember about being diagnosed at seven?

Kate 3:29
It seems like there was some sort of magic going on. The word diabetes cropped up about 40 times that day, like we turned the radio on, and it was saying diabetes or diabetic disease, things like this. My parents are both medical. My mom actually worked in the Children's Hospital, not in any way related to diabetes. So I think we caught my transition very early.

Scott Benner 3:57
Okay, so you're have family members, your parents who are in the medical field, and you're just hearing ads and stuff like that the word diabetes is coming up a lot that day. But were you having any symptoms.

Kate 4:11
I had a couple of weeks of very rapid weight loss. My parents really struggled to get any kind of fluids into me and I had drunk like seven glasses of orange juice with breakfast and asked for water three or four times in the day and like that's definitely not right. And I had thrown it thrown up in my sleep a couple of times. Well, that's fun. So they knew something was definitely not correct. And my mom took a urine sample into the hospital and just left it on the counter for one of the doctors to walk past and someone walked fast and lifted it and whose is that? They need to come in immediately. What was that? That's case. So we were rushed down to the hospital. It was about it. I think it was eight o'clock on a Thursday night. To be introduced to doctors and nurses that my mother knew personally, but that I didn't know and have my blood sugar tick, and my blood sugar was 43. Which I'm not entirely sure what that is, in fact, I'm not entirely sure the conversion chart that I have goes up. But Hi,

Scott Benner 5:22
I have let's see, I have a great conversion chart on the podcast website, which somebody from the one of the listeners made, and it's actually really terrific. I'm gonna look real quick for you. 774 I have it as that's a pretty big number. Yeah, so So your mom just kind of like used?

Kate 5:43
I was quite belligerent.

Scott Benner 5:47
You were belligerent as a child, because your budget was so high.

Kate 5:51
What will go with that?

Scott Benner 5:56
Sure, why not? So your mom uses her ends at the hospital to get your your urine looked at? I'm assuming they take you in how long? Were you at the hospital? Do you remember any of that?

Kate 6:05
I think I was in for a week. And I probably didn't need to be there that long. But it was a week before I would let anyone else inject me. I took my own injection from like the morning after I was admitted. And wouldn't let anyone else near me with a needle for a week. So they couldn't let me go home until at least one of my parents had given me an injection. So that was a week later. That's there's a cat in this room somewhere.

Scott Benner 6:39
I mean, is it your cat? Well, I mean, I guess that's fine. That the way you just turned around, I was like, there's the cat. She doesn't expect the in the room all of a sudden. Is there any other type one in your family on your mom or dad's side?

Kate 6:53
I have a second cousin on my mom's side. So my mom's cousin's daughter is a type one. And we have a number of type twos. My mum had as arthritis. So I'm not sure if it's the type that would be relevant.

Scott Benner 7:15
Without Hashimotos celiac? No

Kate 7:18
Hashimotos or celiac. My mom definitely has an underactive thyroid. Okay. And other than that, not that much anything that I'm aware of,

Scott Benner 7:29
is your mom take medication for the thyroid? She does. Yeah. Okay. All right. Well, what was it like growing up in Ireland with diabetes?

Kate 7:41
When I was diagnosed, it was, it seemed to be not common. I have never really known very many other people with type one. I did go to like a children's summer camp for diabetics twice. When I was little, I think when I was eight, and when I was either nine or 10. And then, as far as I'm aware of those camps stopped running, because the person who was instrumental in running them was assassinated by the IRA. You don't hear that every day. We're Excellent. Sorry. I have. It does seem ridiculous and even seems ridiculous to us. Because it's like, it's been a long time. I'm from the troubles were the troubles

Scott Benner 8:29
Catherine their murder had nothing to do with diabetes, I assume? No,

Kate 8:33
no. Okay. It was to do with it has to do with his day job. That's, that's crazy, which, you know, was, was not in any way related to any kind of sectarian goings on. He just worked for the wrong company.

Scott Benner 8:51
So for all of you who don't like living in America, you could live in Ireland where you'll get shot for reasons I don't know. And your internet, it's gonna suck.

Kate 9:00
I have. I have family who grew up in Saudi Arabia who were scared to come and visit us here. So

Scott Benner 9:10
listen, I'm making assertions. And the only thing I used to know about Irish and something else is I hear I'll tell you something. I met my wife. And then I met her family. And I noted that her sister would leave a gathering. I always teased it was like the Lone Ranger. Like she was there one second, and then she was just gone. But I've been told since then, it's called the Irish goodbye. Just is that. Is that a real thing? Have you ever heard that?

Kate 9:44
I have heard that. But I don't think it's like a common usage.

Scott Benner 9:49
I don't think it's one thing a lot of people say. They don't say goodbye. They just boom, they're gone. Right? Yeah, you're diagnosed at seven And, you know, you come home. Now you're gonna grow up with diabetes. Tell me about that a little bit. This episode of The Juicebox Podcast is sponsored by the only CGM you can take off to get into the shower. The ever since CGM ever since cgm.com/juicebox. Well, I mean sure you could take the other ones off, but then you'd waste the sensor and have to start over again. But not with ever since ever since is a six month where implantable CGM. So if you want to take a shower without anything hanging on, you pop off the transmitter, jump in the shower, when you get back out, put it back on, and you're right back to where you started. Come to think of it. You could do that whenever you wanted to. Maybe it was your prom night or your wedding day. Maybe you just don't want the thing on for a little while. But you don't want to go through the hassle of taking it off and having to restart it and you know, starting back over with like wonky numbers and having you know all that that goes with it when you take off a CGM and put it back on Oh, but you don't have to do that with the Eversense CGM. Because ever since is the only long term CGM with six months of real time glucose readings. This gives you more confidence, more convenience and flexibility. The Eversense CGM is there for you when you want discretion, a break. Or maybe just a little adult time ever since cgm.com/juicebox. Podcast transmitter off, pop it back on you're right back where you started without any wasted devices, or time. I'm starting to take it for granted. I am I'm starting to take for granted that Ardens diabetes supplies just show up. But they do because of us med us med.com/juice box we get an email that says you know do you want to refill your order? And you click and say yes. And then it just comes to the door? There's not a lot to say when things are done well yeah, I could stand here and tell you us med carries Omnipod five Omnipod dash Dexcom g7 G six tandem x two libre three libre two I mean, they've got there's so much I'm not even listening at all. I should be I will at the end. I promise. My point is this. It just works. And we don't talk about things enough when they just work us med.com/juice box or call 888-721-1514 Get your free benefits check and get started today with the white glove treatment offered by us med us med here's what they got. FreeStyle Libre three and two. They got it. Omni pod dash Yes. Omni pod five, aha. Tandem. Yep. What about have they served a million people with diabetes since 1996. They have better service and better care is what you're going to get from us med but you're also going to get 90 days worth of supplies, and fast and free shipping. They carry everything from insulin pumps to diabetes testing supplies, the latest CGM, and they accept Medicare nationwide. Find out why us med has an A plus rating with the Better Business Bureau at us med.com/juice box or call 888721151 For contour next one.com/juice box that's the link you'll use. To find out more about the contour next gen blood glucose meter. When you get there, there's a little bit at the top, you can click right on blood glucose monitoring, I'll do it with you go to meters, click on any of the meters. I'll click on the Next Gen. And you're going to get more information. It's easy to use and highly accurate. Smart light provides a simple understanding of your blood glucose levels. And of course, with Second Chance sampling technology, you can save money with fewer wasted test strips. As if all that wasn't enough. The contour next gen also has a compatible app for an easy way to share and see your blood glucose results. Contour next one.com/juicebox And if you scroll down at that link, you're gonna see things like a Buy Now button. You could register your meter after you purchase it or what is this download a coupon? Oh, receive a free Contour. Next One blood glucose meter. Do tell contour next one.com/juicebox head over there now get the same accurate and reliable meter that we use.

Kate 14:31
Both my parents were fairly career driven so they weren't around most of the time. And I spent most of my time with older people, grandparent, an aunt and uncle and I don't have any family members really close to my age. And I was the only the only diabetic I knew. I have the second cousin on my mom's side who is also a type one but I think I've met her twice. They don't live far away, but it's far enough away that I've been presented with a coffee. Oh, me.

Scott Benner 15:10
What just happened? But

Kate 15:13
my husband thinks he's funny. Oh,

Scott Benner 15:15
you should look for a different husband

Kate 15:21
claiming to be kept prisoner?

Scott Benner 15:25
Listen, I'm also claiming that for anybody who's listening, somebody can come get me. I think I'm being kept by, against my will to. Okay, so nobody's around you even the people you know are far away, you don't or aren't far away, but you don't see them very frequently. does that leave you feeling isolated?

Kate 15:44
It does quite a bit. And of the people that I knew of my own age, they only knew of diabetes from like, older relatives who have diabetes, or pets who had diabetes, I have been subjected to that I know exactly what you're going through because my dog has diabetes. Oh, concrete.

Scott Benner 16:08
Exactly the same. How do you respond to that?

Kate 16:12
Usually, you're smiling and nodding situation. You come across this conversation at times where someone is saying, Oh, I used to have type two diabetes, but now it's type one, because they've put me on insulin. And you're like, you have it and you don't even understand what it is very

Scott Benner 16:28
common. Katherine, the next time someone says to you, any of you can use this. I know how you feel my dog has diabetes, you can say, Oh, I work for Sal, I know how your dog feels like. They can follow that along quickly enough. I'm sure you can slip it in, no one would even notice. So does that isolation lead to anything because you have a list here of things to talk about that goes through mental health, self harming complications, you know, and I'm wondering what led you in that direction,

Kate 16:58
I feel I didn't really feel like I had anyone to talk to about it. For whatever reason, I felt that it would be better if I had, what I was going through emotionally, as much as possible if I had what I was going through physically. So I would pretend to have recovered from a hypo, before I had really recovered from a Hypo. Or I got very good at hiding symptoms of high blood sugars and low blood sugars, I would avoid taking my blood sugar as often as possible. Because there was quite a lot of guilt attached to any blood sugar that wasn't perfectly within normal range. Like you would possibly a sign of the times, because it's 30 years ago. But if it was not within normal range, it would be because I had done something wrong. Or I wasn't managing it properly. I wasn't looking after my diabetes properly. So I just avoided sharing what my blood sugar was as much as possible. Okay. And I was a very limited, I'm very much a people person, I was very little child. So when I got the opportunity to go to boarding school I left. So I stopped living at home with my parents when I was 11, which I can't imagine a lot of diabetics get an opportunity to do. My mom had to give a lecture to all the boarding school staff, and then electorate, all the teachers at the school so that I could go and be in boarding and then I would only come home at the weekends. So I had a lot more freedom to miss manage my diabetes.

Scott Benner 18:42
So that was what I was going to ask you did you use that freedom to take excellent care of yourself, or to ignore it further?

Kate 18:49
I would say initially, I was quite strict with myself about managing it. For the first years when I was in like a mixed dorm, they kept my insulin in a locked cupboard in sickbay. And I had to have a member of staff go with me to get my insulin out and take my insulin, which I find like the grossest invasion of all, some member of staff would be coming into your room going, are you ready to come with me? Please.

Scott Benner 19:21
Now, I can't do this by myself. But you're 11 though. So that really that really caters The interesting thing because elevens too young, you've only had it for three or four years. You're not doing well to begin with. It's not like it's not like at home. Everything was going terrific. So now you're taking the did

Kate 19:37
your parents, I would set my HPA once he was probably pretty good. At that stage. I had a bit of a wobble when I came to the end of my honeymoon periods. And it took us a little while to work out that oh, she literally just needs more insulin. That's what this is because I couldn't understand why it was suddenly high all the time. My diet was very strictly regimented. I did I started off as a diabetic at the time when it was like, Well, you take this much insulin at this time, and you eat this much. Yeah, no matter what's going on, if you're at a birthday party, you can still only eat this much. If you feel sick, and you don't want to eat, you still have to eat this much needed at that time. And it doesn't matter what time the party is, at that time, you have to eat off you go, Oh, it was very strictly controlled. And a lot of high, I manage day to day was about finding a way to be at a certain place at a certain time, because that's when I needed to take my insulin, okay, and that I needed to

Scott Benner 20:35
eat. So you would consider from seven to 11, well controlled with your mom's help, or were you doing it on your own. With

Kate 20:42
mom's help? Well control, I would have been more or less counting my carbs by myself from that period on. And as my parents were at work all day. So I would have been kind to my own carbs through the day as well. I got quite, because you were so restricted in what you were allowed to eat, it wasn't as difficult as it would be, I feel naive for a child trying to count a different amount of carbohydrate every day and try and work out a dose or program, a pump. To give the right amount of insulin, you were just like, well, you know, if you're really stuck up for digestive biscuits, and that's exactly the right amount of carbohydrate.

Scott Benner 21:31
And so when you do, can you look back and say, Were you set up for failure leaving? Did you really know what you were doing on your own? No,

Kate 21:41
but there was less to know, because you weren't adjusting your doses, you were just taking the same amount every day at the same time. And if it went wrong, it was either because you had exercised shortly after taking insulin, or you had eaten too much or too little. And

Scott Benner 22:02
so as much as there was not a lot of, there wasn't really a lot of a lot to do for you. But you still didn't do it. When you got there like or you did it. And then it kind of waned as you were there.

Kate 22:15
When it wind over, like over puberty. And shortly thereafter when I was like in my annoying teens, it became a kind of rebellion. Alright, it's like, well, I hit my diabetes, so I'm not going to give it any attention. Okay,

Scott Benner 22:33
when did you start having complications?

Kate 22:37
I do have slow digestion. And I have had it described as nerve damage. But I know I had symptoms of that at 13. So I don't know how accurate it is to describe that as a complication, I would say my mid 20s, I started to have issues with my eyes, I got a bad result of routine diabetes eye screening, which we get basically forced to go to once a year in the UK, so that would be arranged. And you'll just be sent a letter go to the screening. And I got a bad result of one of those. And it happened to me around about the time. My ex partner and I were looking to get ready to move from Northern Ireland back to England, which is where he's from. And I had discharged myself from the hospital, and then we decided we weren't going they wouldn't take me back.

Scott Benner 23:43
They wouldn't take you back told me about that. It became

Kate 23:49
it became a whole ordeal. And took, I think a year and a half until eventually I had to just go back to the routine ice screening to get put back on the list to see the specialist about my retinopathy. Because they couldn't put me back into a list after removing me from it. There was a lot of faffing about and then we were back to the bottom of the list. Okay. From I did eventually get back into it. It's not a macular problem, but it is the macular clinic that I attend. I'm usually the youngest person there by about 30 years. I've had six lots of laser surgery to correct the retinopathy. The first surgery didn't go very well because I am extremely photo phobic. And if I look at a bright light, my eyes just clump shut. So the first thought of surgery did not go well at all. And every time thereafter I have had a local anesthetic for the laser surgery which I would not recommend.

Scott Benner 24:50
That's just to keep you a little dopey so you can't close your eyes. It's to

Kate 24:54
numb the nerves for your eye. So you do go to Line temporarily while your eyes and asymptotic G's rich. They're very poor at explaining things to patients here on like aftercare kind of brushed over. So the first thing that they'll ask you to do is to hold your eyes still while they put a needle up your tear duct. Okay, which is not great fun.

Scott Benner 25:25
Okay, I feel like I just got kicked in the balls in case you're wondering how it's going over here. Really? Jesus, very unpleasant.

Kate 25:38
Doctor said follow me and left the room. And I got about three steps that I can't see. And then you have this momentary panic? Oh, maybe I'm supposed to be able to see and something's gone horribly wrong here. I can you help me? Kate,

Scott Benner 25:57
I wouldn't let anybody stick a needle in my eye in a country that couldn't figure out the internet. What do you think of that?

Kate 26:07
What's the alternative?

Scott Benner 26:08
I don't know. I have no idea. What country is to your left?

Kate 26:16
It does become your you're on your own? Yeah. You kind of have to just pick a person to trust doing the things that you can't do yourself. And aside from that you're on your own. Yeah, I feel that. You can't necessarily. Definitely not going to mention any of them. So you can't necessarily just trust what you're told at the diabetic clinic? Because they're going to tell you to eat

Scott Benner 26:41
loads of carbs. Yeah. And I'll tell you how to use your insulin. No,

Kate 26:47
not if you're concerned about your weight, and I'm particularly interested in your weight. They're only concerned about your blood sugar beet staple. There is absolutely no hope in hell, my blood sugar would be stable, no matter what I was doing. If I was eating the amount of carbohydrate recommended. Yeah, that became even more ludicrous. While I was pregnant. Where I was told by one dietitian, I should be eating 270 grams of carbohydrate a day for the baby. Like while I was pregnant, but obviously keeping my blood sugar under eight.

Scott Benner 27:24
Okay, 201 270 270

Kate 27:28
grams.

Scott Benner 27:32
I mean, this is just the Google. But how many carbs? Should a pregnant woman eat a day? Institute of Medicine recommends 175 grams of carbs intake during pregnancy. However, many women are consuming lower carbohydrate diets within pregnancy, improving for glycemic control. Yeah, I mean, I don't think 200 Like it's not a rule. That's for sure. Not I mean,

Kate 27:54
I think I put the phone down on her. And just putting in by Tom to see what it says. So to Bolus for that I would need 45 units of insulin. Yeah. And,

Scott Benner 28:07
yeah, I mean, just in general, like I don't understand eating more than you need. I understand eating what you need, etc. But, I mean, that's not like, here's my point, if somebody said to you eat 200 grams of carbs even. But here's where I want you to get them get this much from vegetables, get this much from here get that's, you know, maybe, okay, whatever. But when you just give people a number, they're not nutritionists, they're just gonna start looking at things and eating whatever they have until they get to the number. It's just it's an incomplete way of making your point is what what I find upsetting. They

Kate 28:42
seem to be very concerned with low blood sugar during pregnancy. And I have not heard an explanation as to why not that I was attempting to set with my blood sugar at 3.5 throughout my pregnancy. But if if my Libra was reading 4.5, then a blood test probably would have been five, I was not concerned about a blood sugar 4.5 for blood sugar. 4.5 is normal. For a normal person. They were freaking out.

Scott Benner 29:22
Yeah, I mean, a 4.5 is 81. Yeah, that seems reasonable. It's very low, I would think. I don't know. I just think nobody knows what they're talking about, generally speaking, and it's fun to know that it exists in other countries as well, not just in America. I

Kate 29:37
think it is a very dangerous thing. Because I have one or two people. I wouldn't necessarily call them friends. There are one or two people that I know vaguely, because I happen to get my pump on the same day and we were in the same class learning how to use our Medtronic pumps. And one of the girls Girls that was in the class at the same day as me had recently had her first baby. And I when I fell pregnant, I had texted her and said, How did you keep your blood sugar under control, particularly after meals with the amount of carbohydrate? They're asking us to eat? And she replied and said, I just did a low carb diet and lied to the hospital.

Scott Benner 30:21
Oh, there you go. Perfect. Yeah, that's what you want. That's where the advice was leading her. You know, she's like, I can't do this. And I can't argue with them. So I'll just do my own thing and not tell anybody. Yeah. Okay. All right. So the baby came out. Okay.

Kate 30:38
Her baby did. Yes. We, we lost our baby, actually a year ago today.

Scott Benner 30:43
Oh, my gosh, wait, I'm sorry. Okay, so this is during the pregnancy.

Kate 30:49
During the pregnancy, I had contacted her for advice, because I think I have my certainly for the earlier part of the day, from getting up in the morning until about three in the afternoon. I had my pump on 200% or more of my normal daily dosage to try and keep it at a reasonable level. And I was eating very little carbohydrate.

Scott Benner 31:11
What did they tell you what they thought happened to the baby? They

Kate 31:15
did do some investigation afterwards, but they weren't able to find anything conclusive.

Scott Benner 31:20
How far along? How far along? Were you?

Kate 31:22
We were 12 weeks.

Scott Benner 31:24
I'm sorry. Do you? Was that your first try? It was our first try. Do you think you'll try again?

Kate 31:33
I think we're just about to get into that this night, where we'd be ready to try again. But you know, we're both a little bit older for first time parents. Yeah, I'm a little wary of needing any kind of assistance, because I'm almost at the age in this country where they wouldn't allow you to have assistance unless you were going to pay for it privately. I think 42 is the cut off? What kind of assistance IVF treatment?

Scott Benner 32:05
Did you have trouble getting pregnant? The first time were you trying for a while? Not at all? Your poor husband.

Kate 32:15
We got married last year on the fourth of May. Because we're nerds. I think I started my period two days later, which would have been the sixth of May. And on the 17th of June, we had a positive pregnancy test. Wow. Quick work and all seem to line up very nicely. My diabetic anniversary was alright you did. I was pregnant at the same time as my cousin. And very strong pregnancy symptoms. Everything seemed to be going extremely well. But a private scam because the shifts My husband works on he was never going to be able to come to the hospital with me. So we had booked a private scan so that he will be able to see and then we went to the scan. There was nobody in there.

Scott Benner 33:03
That was it. Just like that. Yep. Oh my gosh, that's terrible. I'm sorry. needed

Kate 33:09
quite a lot of assistance to end the pregnancy then which took from ours down. Just look at my diary. are scams on the 20th of August. And the 29th of August, which was the was a bank holiday Monday last year, which was a year ago today. We were in the hospital having surgical intervention.

Scott Benner 33:37
Nine days before the procedure. Yeah.

Kate 33:42
I was frantically emailing the hospital. But our scam was on a Saturday. And Sunday I was frantically emailing the hospital. I was supposed to have an appointment, which they call the booking appointment here and a scam on the Tuesday following the scam where we find out the baby wasn't there anymore. And asking was I still expected to come to this appointment on the Tuesday did they want I really did not want to be in the hospital surrounded by heavily pregnant women. I really didn't want to have to do it. Yeah.

Scott Benner 34:17
No. I mean, I can't imagine what I understand.

Kate 34:22
Or is there a different appointment I should come to and they told me to come the following day, which was the Wednesday and I could bring someone with me probably was working so I took my mum. And it's always good to have a second pair of ears when you're in shock. And they give me hormone suppressants that day. And then tablets to take which I took on the Friday and I'd arranged to just be off work and spend the day with my parents on the Friday when I took the tablets and things started to happen. Mainly a lot of pain started to happen on the Friday, and just got worse and worse as the day progressed, and nothing else seemed to be happening. And the following day, the pen continued and nothing else seemed to be happening. On the Sunday, we had a family barbecue planned because we were, we had initially planned to tell the whole family we were pregnant at this barbecue. My cousin had just had her baby. And it was his first, I think, to meet the family. Time and it's like a Greek tragedy. So I have my cousin texted me saying, Do you want us to not come? And I'm like, no, please, I'm like, I need something happy, please come, please come and please bring the baby. And you know, we will let on to family what had happened. And just carried on with the barbecue. And every now and again, I had to go and sort of put my elbows in the sink and close my eyes and go, Oh, this is painful. And at some point, the hospital rang to say, well, is everything for rest, as it sure did everything over like No, not at all. No, we're

Scott Benner 36:15
just at a barbecue. Everything's everything's the same. Thanks for asking. How did you deal with all this? Because in your notes, you talking also about? I mean, like I said earlier, like you wanted to talk about mental health and self harm, like how do you? Is that a thing you've left in the past? Is that something you're dealing with now? And if so, how does it intertwined with all this?

Kate 36:34
I wouldn't say it's entirely my mental health problems are entirely gone. But I am in such a better place. And I have an excellent support system, my husband, who was claiming to be kept here against as well. It's amazing. Certainly in comparison to anything I have had before. He is willing to do things that I would never have asked another person to do. He has my blood sugars coming through on his phone. He's checking up on me, he's reading things. He knows what's going on. And that may not sound like something that you wouldn't expect from a partner, but it's not something that I've had before. Okay. And I think particularly in a relationship that you're starting later, I mean, dating in your mid 30s. Isn't? I wouldn't recommend it. The last time I was dating, there were no smartphones.

Scott Benner 37:40
Oh, you were with somebody for a long time before recently. 15 year? Oh, my gosh, where are you married?

Kate 37:48
We're married just over a year. We were married for somebody last year. To the previous partner. No, no,

Scott Benner 37:54
the previous partner? No. Okay. But you were together for that long.

Kate 37:57
We were together from university. Wow. That's

Scott Benner 38:01
interesting. And was that an unexpected breakup?

Kate 38:04
It was unexpected to me. Not to him. No, no, not to him.

Scott Benner 38:11
Is the Irish Did you just leave and not say anything?

Kate 38:14
No, he didn't. He from Yorkshire. In England, he, he actually moved here with me. In what 2009 I had lost both my grandparents on my mom's side in quick succession and decided I needed to be home for a while. And we agreed that we would move back here for a year. And then he got a really good job. And we just stayed. And we were here for a long time. He owns property here.

Scott Benner 38:47
I don't need a ton of details. But I was just wondering like it just like it ended abruptly for you. And I didn't

Kate 38:55
know no one was saying about Greek tragedies. My diabetes has been poorly controlled. I have put a lot of work into getting it back to a reasonable place. I would still like to improve my control. But I would say it's at a reasonable place. When I go into the diabetic clinic, they're more interested in telling me it's the best graph they've seen today than improving. Were my controls out at the moment. But I spent I want to say six seven years attending the free pregnancy clinic or hospital trying to get my my diabetes control to a place where they were going to give me permission to try and get pregnant and the morning that they have my appointment and they told me I could get pregnant whenever I wanted was the morning that we broke up.

Scott Benner 39:52
Oh perfect. After seven years of trying what were your blood sugar's outcomes a once he's like Prior to going to that class and getting yourself down and what helped you get to a place where you could get pregnant? To

Kate 40:07
be honest, a lot of it was the Juicebox. Podcast. It's worse my HB one C was 13.9, which is 120. I believe.

Scott Benner 40:22
Are you looking? Yeah, okay, I was gonna say I can't tell when I lose you or when you're doing a one C? Of what a one C of what? Mine?

Kate 40:34
It was 13.9. I think that's 128.

Scott Benner 40:39
Well, 13.9 is an average blood sugar of 352. Or an average blood sugar for you of 19.6. Does that sound about where you are?

Kate 40:53
I want to say yes, but it would have required me to be testing it more often.

Scott Benner 40:59
So you wouldn't have known to begin with so you're not testing, you're not using enough insulin, you don't functionally understand what you're doing. You're with this guy, you decide you want to have a baby, you go to the clinic, where they're going to help you get blood sugar's like, quote unquote, where you need to be for for pregnancy. But that takes six or seven years to accomplish. When you accomplish it. That guy leaves. And but you didn't accomplish it really through the classes. You found the podcast, when did you find the podcast? When did the podcast start? 2015

Kate 41:32
I don't think it was maybe 2016.

Scott Benner 41:37
So you're listening, but you're still not completely focused on your management, or it took you that long to get it together. Oh,

Kate 41:45
it took me that long. Okay. I completely avoided talking to my parents about my diabetes control for years. And I remember coming out of the hospital and ringing them to tell them that my HPA once he was in single figures, because it was 9.9.

Scott Benner 42:02
And everybody was like way to go

Kate 42:04
mentally. And they were horrified. And I got my first I was given my first Libra sensor, like a drug dealer would give you a free sample of something. Here, try this FreeStyle Libre sensor that will track your blood sugars. And I think I'd had it on. I think I got it on a Thursday, and I had it on Thursday night Friday. And on Saturday, I went for a run. And then for a swim and it fell off. And I already knew I couldn't do without it from having it on for 40. At

Scott Benner 42:41
work, they hooked your quick. Yeah.

Kate 42:45
At that time, it wasn't available on the NHS. So I self funded that for two years. And I get it on prescription.

Scott Benner 42:54
Is that something you could have afforded? Or it was just it meant enough to you that you made adjustments to your finances? If

Kate 43:01
it meant enough that I made adjustments? I didn't really have any money to do anything else? Gotcha. So it was a bite, where they were 50 Ponds around 50 ponds, and they last for two weeks. So just over 100 pounds a month. And I was I was earning minimum wage at the time. So it was a considerable portion of had to cut out a lot of things to be able to afford it. But I

Scott Benner 43:29
have 100 pounds as about 126 American dollars for people understand what interested okay, there's no doubt how valuable that information is. So if so, is it really the podcast? Or was it just being able to see your blood sugar that helped you and

Kate 43:43
same as being able to see my blood sugar definitely helped. But I'd already made a lot of progress. Oh, from listening to the podcast and you know, kind of getting a grip on myself and testing my blood sugar again. When my HPA once he was 13.9. I was also referred to the clinical psychologist, which was immensely helpful. And I still see the clinical psychologist, I certainly don't see them on any kind of a regular basis. I have you because it's a chronic illness clinic you will not be discharged from it. But I am no longer given sheduled appointments. I will just contact them if I need to talk about something but

Scott Benner 44:31
speaking speaking to that psychologist helped you to what what were you not? What was not happening that was happening after you had those conversations? I

Kate 44:45
had depression and generalized anxiety. Okay, he level my HB one C was at has been referred to as suicidal by a number of clinical professionals. To me and And

Scott Benner 45:00
did it feel that way to you, Catherine, did you feel like you were trying to hurt yourself?

Kate 45:03
I certainly was having a lot of thoughts about life not being worth living. Okay? Because I think I was 30 I turned 30. And I was driving to work. And thinking about what my options were a finding a way that I could work from home, because I didn't think I was going to be physically able to continue going to work every day, because my health was so bad. I have been diagnosed with nephropathy around the same time, and I was on a number of medications to combat the nephropathy and my high blood pressure, which at one point was something like 270, over 180 G's

Scott Benner 45:52
really,

Kate 45:54
I thought I was gonna have a stroke. Yeah. And so one of the medications that they gave me to combat, I had really horrific reactions to I had fairly bad edema. I couldn't breathe. I was having fainting and dizzy spells, I had cysts in my joints, it was pretty grim. And they just kept bringing me back for blood tests, which were inconclusive. And it wasn't. We went on a holiday to stay in which I was in so much pain, I could hardly walk. And that week, we were in Spain. And the Spanish healthcare system is excellent. And my parents took me down to like the local clinic and their local time, and I had like a full speck of bloods done. And we went and got the results the next day, and the Spanish doctor came out to me with the page and pointed to the medication on my list of things I was taking and said, There is your problem.

Scott Benner 46:55
You're just taking so many so many different medications. And

Kate 46:59
it was that one in particular is apparently known for Oh, having quite a nasty spectrum of side effects. I stopped taking it and those symptoms had gone away within two weeks.

Scott Benner 47:13
Jesus really how long were they going on for? I

Kate 47:17
was taking it for a year. And prior to that I've been taking a different one, which was an ACE inhibitor, which gave me a cough like croup, okay? I just I happened to cough in front of the kidney specialist one day and it was off, if that's making you cough like that, you'll have to come off it. This is after having, I don't know three courses of antibiotics from my GP to deal with this cough that won't go away because currently they don't read your chart.

Scott Benner 47:42
So So okay, so the therapy helps with the feelings about life not being worth living, and you get some better health care and get off of medication that's hurting you. You're listening to the podcast and trying to make adjustments. It sounds like you were moving through quicksand. Like but but making progress just slow progress, which is

Kate 48:04
Is that about right? It's been progress over years. Yeah, it's taken years I do have a list of complications, but they're all stable Not at the moment. I have been to the eye specialist within the last month the back of my eyes are stable. There are no changes. There are no new vans, I have a lot of scar tissue. and a high blood pressure event has caused bleeds in the past. But it's been two years since the last one of those everything is nicely stable. She be English isn't her first. And she has this odd turn of phrase because they they send me to her from the pre Pregnancy Clinic. Just they are to see if my eyes are stable before we try getting pregnant. And she says it's okay for us to start practicing.

Scott Benner 49:10
But does that mean you don't know finish within 10 Is that thing

Kate 49:16
about stable? I own the the kidney specialist once a year and I for a checkup unless my meds need tweaking. So my blood pressure is perfect. My protein leakage is well under control. My kidney function is over 60% Which is where they stop measuring. considered normal if it's over 30

Scott Benner 49:44
Well good for you. Do you feel like a weight lifted?

Kate 49:46
The last year since we lost the pregnancy has been quite difficult. And I put on a lot of weight between getting pregnant and no And I think a lot of that has been to do with the amount of insulin that I had to take to keep my blood sugar. Stable. Yeah. So over twice what I was normally taking. And it's been kind of difficult to get in control of

Scott Benner 50:21
that. Also, were you, were you really going for the 270 carbs thing while you're pregnant? You weren't doing that. Okay. Yeah, that would have been crazy. The amount of insulin you would have needed then would have been insane.

Kate 50:37
I feel guilty about using a lot of insulin. I mean, we don't, I don't have to pay for my medication here. But that's not true for everyone. I feel guilty about using a lot of insulin.

Scott Benner 50:52
Okay, I hope you can find a way not to feel guilty about that. That's just you're just using the amount you needed. Not a thing you should feel guilty about. Why do you feel guilty about that?

Kate 51:01
It feels wasteful. Really. We've had some supply problems here recently. And like, since Brexit, I have been stockpiling insulin, like not to a ludicrous degree, but I'll have like three or four files in the fridge more than I technically need. Oh, my God, am I glad that I did that. There's been a period of a couple of months where they're just like, oh, we just can't get that. There isn't any.

Scott Benner 51:30
I have to say I, I would feel guilty about that. I think I think that you should use what you need to use. Just enough to feel bad about life. Don't feel bad about that. You know? Okay, so let's see what we have here. Let me ask you, if there's anything we haven't gotten to that you definitely want to talk about? I don't think so. We're doing okay.

Kate 51:56
We're done. Okay.

Scott Benner 51:59
What about the podcast helped you was that because I've heard some people say I knew what to do. You didn't tell me like how to manage. It was I felt like connected to diabetes by listening every day and hearing other people's stories that made me want to do a better job. So did you not know what you were doing? Or were you just not doing it? In

Kate 52:20
Part, I didn't know what I was doing. I learned about Pre-Bolus thing through the podcast. I have since had Pre-Bolus thing mentioned to me through the clinic. But like within the last four years, okay, people this thing has been mentioned, for the first time to me through the clinic, they sent me on a Daphne course, which is the dose adjustment for normal eating course, I think made a huge difference because it was probably the I probably hadn't had any refresher about counting carbs. Since I was eight years old.

Scott Benner 52:58
Oh my god. Can I ask you a difficult question, Kate? Sure. What's with your parents.

Kate 53:07
They were busy all the time. And I'm a control freak.

Scott Benner 53:11
So they weren't trying to help. And if they did try to help you push them away.

Kate 53:15
When I was diagnosed, we were told 40 grams of carbohydrate for a man meal, and 20 grams for a snack. And I was seven years old, but my mother would be quite keen for me to continue working on those ratios. Now as an adult. If I see my mother and she doesn't mention my wit, I would be wondering what was wrong with her? So

Scott Benner 53:43
is it? Is it just that her style doesn't match well with how you need to be spoken to?

Kate 53:50
Maybe? I mean, I don't think she should speak to anyone. So I

Scott Benner 53:54
know I'm just saying I'm trying to trying to be polite, but okay, so they weren't helping you

Kate 54:02
with parents of a certain age thing. Are they older? They were in their 30s When they had me and I'm nearly 40 So they're around 70 know, my mum, parents were a lot older. My grandfather was born in 1910.

Scott Benner 54:20
Is it how direct is it? Is it okay? You're fat? Or is it some it's pretty direct? Okay. I was gonna try to give you a spectrum. She was out of

Kate 54:34
the ex boyfriend. The first time I ever brought him home from England to meet my parents. My father met us off the plane and greeted me with the phrase you haven't lost any weight. Have you? My ex boyfriend looked at me when he's brave

Scott Benner 54:53
Oh, my sorry. I don't know why I'm laughing that just it's there. That's that's what got me is the idea of like there She is right there with her boyfriend who we've never met before. And you know what I'll do? Yeah, that's terrible. Sorry. That sucks. I don't know why you were depressed.

Kate 55:14
Okay, so I think like a lot of what helped me was, without that realization that you were on your own with it, so you kind of better get on it. You know, there's no point in waiting for it to get better. If you want it to get better, you're gonna have to make it better. And actually making it better is not as complicated as it may seem. No

Scott Benner 55:37
know. I mean, listen, if I can talk about it, and it makes sense that it's got to be pretty uncomplicated, because I'm pretty much an idiot. But what I'm seeing here is, I can't believe that I've come to believe this. But I've talked to enough people, you have a very common story. Diagnosed at a certain age, you know, there weren't a lot of expectations. So managing diabetes seemed kind of easy, because nobody was really tracking it that much, and there wasn't that much to do. And then you get a little older, you don't really know what you're doing. But in your parents mind, you're like, Whoa, she takes care of it. So that moves on you head out of the house, you get older, you ignore it, at some point, you decide you want to have a baby, this is really a common like, story for women, you decide you want to have a baby, you start looking hard at your health, and you go, Oh, God, this is nowhere near me having a baby. And then you make steps towards either getting that together or give up. That's really how I see it go. Yeah, those are your options. Yeah. And so you know, you can go backwards in the, here's the kindness, you come on and tell the story so that people whose children are now eight and 11, and 15 and 18. And hear this and think we could get ahead of this. And this doesn't have to be my kids story. That's why I like having the conversations, because I hope they're spurring other people into doing it. Or I'm hoping like a, like a 20 year old girl at college hears this and says, You know what, why don't I not wait the six years to decide I want to have a baby to take care of myself? Why am I starting now? So my eyes don't bleed. So I don't feel I don't find out what it's like to get a needle in my tear doc, and or whatever else is coming here. And we also haven't really talked Kate about high blood sugars could absolutely make you feel like you're depressed. Or it could give you mental instability. You don't I mean, like you could be

Kate 57:33
an angry angry person. Right? And but

Scott Benner 57:36
people don't see that they don't go oh, you know, Kate's blood sugars are really high all the time. They just go she's mad, or she's angry like you, you don't realize how many parts of your life it's going to touch in ways that like, There's no magical doctor that's just going to look at you and go, Oh, I know what's wrong. Take one of these, turn this dial here eat some of this, Baba, bah, all fixed. Life doesn't work that

Kate 58:00
way. No, unfortunately, magic pills. And

Scott Benner 58:03
variables start layering on top of each other to the point where you can't make sense of them anymore. And again, by example, you're taking a medication for a year, that's decimating you and you don't even realize it. I'm just saying, if you start off well, you have a much better chance of ending Well, yeah, and and that's what to me. That's what your story is about. It's about what happened to you, and you found a reset point. And that's terrific. And you'll move forward from there and everybody else. I hope you find your reset point sooner than that. I also think it's a great example that I don't give a crap how smart your eight or 11 year old is. Really don't put them in charge of their health. I mean, they can be part of it and learning as they go. But you can't just walk away from them and say they have it. I don't know that. I'm not sure I could walk away from Arden at 19. And that she wouldn't be on someone's podcast 10 years from now going, Yeah, you know, he let me go on my own. And the next thing I did was XYZ just like everybody else say,

Kate 59:08
you know, if they hadn't let me go on my own, I might have lost my mind. But oh,

Scott Benner 59:11
you'd be nuts with good blood sugars. Is that what you're saying?

Kate 59:16
In prison for murder. So

Scott Benner 59:19
let's assume that in the conversations we're imagining they're not your mom and dad. Oh my god, I can't imagine where you in the airport when he said it. Were there like people around? Yeah. Surrounded

Kate 59:34
by people.

Scott Benner 59:37
Wow. He didn't read any of the parenting books. I

Kate 59:41
wonder if I can find it because I actually have it on video. My parents were in Spain when we found out we were pregnant last year. And we had the the one photograph that I'd been given at the hospital showing a little, a little bump and I'd put it in the back of the photo album of the wedding photographs. So we were showing those to mom and dad and I just put this the scan photograph in the back. When we were telling them that I had my mom on video to the end of the turning the period and looking at it and staring at it and looking at me and saying, You can't lose any weight. No, I can.

Scott Benner 1:00:22
Is your mom then?

Kate 1:00:24
I would. She's not overweight, but she's constantly on a diet.

Scott Benner 1:00:27
Okay. We all are. So oh my god. Yeah, I don't know what to say. It's terrible.

Kate 1:00:39
Go kind of wish I didn't have that on video. Yeah,

Scott Benner 1:00:43
yes. She didn't go Oh, I'm so happy. I'm so proud of you. I can't wait. What do you think you'll name the baby? None of that. She went Ah, well, she

Kate 1:00:50
was clearly happy and smiling and crying and hugging. But that's what she said. But

Scott Benner 1:00:56
that's what she said. And that's something. I wonder why that is? How is she? 60.

Kate 1:01:01
She's 30 years older than me. So she is 67.

Scott Benner 1:01:05
Tell me when you were born? What year 84? She was born in 5454. Okay. I don't know my mom was born then. She didn't say any. Well, my mom was born actually earlier than that. And she still didn't say that kind of crazy stuff. Me. It's just luck of the draw. Are you like that? Be real honest with me. I mean, I don't think you are okay.

Kate 1:01:31
I am. I am pretty much as non judgmental as they come. I don't have grinds to be judgmental of other people.

Scott Benner 1:01:40
Well, that's self awareness. I don't maybe your parents don't have that. Who knows? It might just be generational to honestly. You know, it sucks. But maybe it's just how they were brought up and how they were raised. And it's how they talk. Maybe they didn't help you. That's for sure. You still talk to them? It is?

Kate 1:01:58
Oh, yes.

Scott Benner 1:01:59
Yeah. Do you really talk? Yes,

Kate 1:02:03
I have put a lot of work into keeping that relationship

Scott Benner 1:02:07
is the work, you're not killing them is that the work?

Kate 1:02:11
Sometimes, I mean, when my my previous relationship fell apart. And I was in the very enviable position where I had assistance in getting a deposit to buy my own place. I moved in here on the first lockdown started, within three months of me moving into a house by myself for the first time ever. And they offered to have me come live with them. You said, I stayed here by myself.

Scott Benner 1:02:46
But what did you What did you say though? No, no, thank you. Did you bother telling them? Why do you think they knew why? I

Kate 1:02:57
don't I don't think they would understand why.

Scott Benner 1:03:01
Okay. I mean, I believe that I don't I don't think so if I'm being clear, I don't think that your parents is an example, or anyone's parents who would do something like this. I don't think that they're sitting like, you know, I don't know, the bad guy from a 40s movie, wringing their hands and planning your demise. You know, the

Kate 1:03:21
most frustrating part of it is that it comes from a place of love, and his like, but you can't say that.

Scott Benner 1:03:29
Or maybe there's a better way to talk about this. And maybe there's not, by the way, like me, you've alluded to it, maybe it would have been difficult. Like maybe your mom could have come up to you as nicely as possible, and tried to have that conversation with you. And even if she said everything textbook you might have gone. Are you calling me fat? And maybe it just would have gone that way anyway, like, I have no idea. But you could try, you know, just use I don't know what animals let their kids go at a certain age and never see them again. Maybe we should try that.

Kate 1:03:56
Most animals, most animals.

Scott Benner 1:04:00
Maybe we should try that for a while a couple of generations have just been like right leave good luck, and we'll see how this goes and keep me out of your problems. And maybe I won't make them worse. Oh, my gosh. All right, Kate, I really appreciate you having this conversation with me and sticking through the technical trouble and everything. It was really lovely to get to know you. I appreciate it very much.

Kate 1:04:22
You too lovely to finally get to speak to you in person. Well, I've been listening for long.

Scott Benner 1:04:28
That's it's so nice. I can't believe you've been listening that long. That's terrific.

Kate 1:04:34
It certainly helped me a huge amount.

Scott Benner 1:04:36
I'm glad I really am. So again Pre-Bolus saying like so management ideas helped you because you didn't have those. Do you like hearing the people's conversations is that are that I

Kate 1:04:49
love hearing people's stories. I think when you see diabetes represented in them when you see diabetes represented movies, and it's almost always entirely incorrect. When you see it represented in the media, it is either doom and gloom, or someone showing what a good day they've had. For the most part, I'm certainly predating the podcast, I did not see anyone struggling with control represented, okay. It appeared that I was the only person struggling with control. And you knew that mustn't be true. Because when you go to the clinic, there are other people there who are clearly struggling with control. But their stories are not represented. So

Scott Benner 1:05:42
you think, is it to say then that the podcast does a good job of accurately representing what it's like to have diabetes? Yes. And that that's important to you? Absolutely.

Kate 1:05:54
And the the episodes with Janee, the big episode about variable, I must have listened to that episode, like 100 times.

Scott Benner 1:06:05
I would like it if everyone listened to all the episodes 100 times, please. Thank you.

Kate 1:06:12
That was one of my favorites. Definitely. Why? It was it's really like this. And I sent it to other people, for them to listen as well. This is what it's like for me on a daily basis. Because people don't see, you know, the number of times I have heard, where you just watch what you eat, and you take some insulin, and then that's fine. Is this. Okay? Yeah, I'm glad you say that.

Scott Benner 1:06:40
I know, that's hard. She and I, Jenny. And I just, I think we just finished up recording the myth episodes, because that was something else. We were trying to shine a light on just what people think and what you hear in public. But you know, what is obviously, mostly not true about your life.

Kate 1:06:59
Our local health center has a special rate for people with disabilities, but they don't stay on the website, what they mean by that. So I had phoned them to see if they included diabetes, as a disability that you would get discount to attend, they'll send her for. And I was told by the woman on the phone that diabetes is not a disability.

Scott Benner 1:07:25
hardly think it's like having a cold, except you get a pump. So yeah, nobody's I mean, it's your point, nobody's going to understand it. As well, as you're going to, I've come to believe that the that statement that doctors tell you like, like a good doctor will tell you listen, in six months or a year, you're going to understand this better than I am. And I think they say it to you, to give you I don't know where that statement comes from. I really would like to dissect it more. But I think it's I think it's, it doesn't help people the way they intended. I imagined they intended to saying, Look, you're going to gather up all these experiences, and eventually you're going to know so much about this, you're going to make me look like I don't know about it, which, you know, hint, hint, they'd already don't know about it. But I don't think that that's a comforting thing for newly diagnosed personally. What do you mean, I'm going to no more than the doctor? That doesn't make sense. Again, it's

Kate 1:08:22
not like you can you can tell a newly diagnosed person you're on your own with this, right? Yeah. Am I? I don't I don't mean it exactly like that. Yet. There are resources and other people and medical professionals that are available to you with help, but they can't understand it for you. Yeah,

Scott Benner 1:08:39
that really that's that's a wonderful sentence. I think that helps. That's why Yeah, I've been thinking about that a lot lately, right? Because I think what they're probably thinking is, hey, listen, you're fine. This is all on you, I'm barely going to help you. And if you don't figure this out, you're gonna have incredibly bad health outcomes. But you know, instead of they go, Oh, don't worry in a year, you're gonna understand this way better than I do. It's like, I guess they're trying to give you like an attaboy like some like a lift up. But I just think that better communication and more words, sometimes is the way to go. You know, just tell them. This is difficult, but it's doable. Here are a bunch of people doing it. Well, that is possible. So set up that there's hope. And then give them some basics, here's what you're really going to have to know you're really going to need to know how insulin works, you're really going to need to know what your blood sugars are, you're gonna have to understand how food impacts you're gonna have to be flexible. These things are going to come in time you're going to have experiences those experiences will inform you. I know this sounds like a lot now, but we'll write them down so it doesn't seem as bad. Here's the fourth. Keep notes as well. Right?

Kate 1:09:50
I have graphs. I have graphs

Scott Benner 1:09:54
of your notes and just trying to figure it all out.

Kate 1:09:57
Is what what am I in while I'm getting through a period of time and how those are affecting each other, I have graphs.

Scott Benner 1:10:05
Okay, let me end with this. How was your blood sugar today? Like, what are your? What is your range? Like? Were you, you know, you struggle How easy is it for you, etc.

Kate 1:10:16
I have been between alarms all day, which is not to say that it's been perfect. It has been between five and nine all day.

Scott Benner 1:10:31
Five is 99 is 162. between 90 to 162. All day, what time is it that right now? It's late, right?

Kate 1:10:40
It is 7pm. Okay, yeah,

Scott Benner 1:10:43
cuz it's like two in the afternoon here. So that's terrific. What have you eaten today?

Kate 1:10:48
This morning, I had some natural yogurt with a very small amount of granola and a sugar free sweetener and my yogurt and I had some fish sticks. And at lunchtime I had some homemade chicken curry with chickpeas in it and broccoli. Sounds

Scott Benner 1:11:10
like a good day. It really does.

Kate 1:11:14
I've had about 30 grams of carbohydrate today. Nobody's

Scott Benner 1:11:17
asked me what I ate today so far. But I would tell you if you asked me, and let me tell ya, I call your mom up. You're like listen, I had a key lime coconut milk. Yogurt this morning. I had one egg with one shrimp. I scrambled the egg. The shrimp had hot sauce on it. I cooked them together and put them in a small wrap. I think the wrap is like 20 carbs. I've also taken a digestive enzyme with my food which by the way, I wondered if you shouldn't try earlier in the episode.

Kate 1:11:50
I actually got some last week. I started taking them on Friday. And I find them to be slightly to effect.

Scott Benner 1:12:00
Oh, here they come out the other side. When you do can you take fewer don't take them with every meal take them maybe more with protein stuff that's harder to digest.

Kate 1:12:10
I was thinking I would take them with like larger meals. Rather than it says take no more than three a day. Yeah, it was meals.

Scott Benner 1:12:22
I tried to stack them with the food that looks more like it's difficult to digest. If you don't, I mean, I

Kate 1:12:29
went through a period of eating like protein and almost exclusively raw vegetables and was having like real stomach problems. And as it turns out, that's probably the worst thing you can eat for so digesting. Yeah,

Scott Benner 1:12:43
for sure. million percent. But I mean, the point is that some type ones just have slower digestion, and it's not gastroparesis. So I would think if you see your insulin hitting pretty consistently, and you're not like getting, I don't know, if you're not getting impacts from food hours and hours and hours later than you expected. You might just have a slower digestion and some of these enzymes like peppered through your meals, like in decent places could really you might even see your insulin go up go down a little bit because the foods not sitting in your stomach as long.

Kate 1:13:17
I do you sometimes see where my insulin will take effect. And I'll go low and be looking at this low going. Should I correct this low? I've just eaten and then have a colossal high because I've had to correct you know, a low blood sugar that has gone to like 3.1 and falling. Yes. But haven't digested the dinner yet.

Scott Benner 1:13:42
Well, that I mean, listen, I'm not saying you don't have gastroparesis either. I don't know. But I'm just saying that this would be an easier way to like, look into.

Kate 1:13:50
I'm hoping the the enzymes will stop that from happening. Yeah, good luck.

Scott Benner 1:13:56
I mean, I don't know what else to say. Like, I won't see you again. So good luck. I mean, I could say something your mom would say, that's not gonna work can't give up now. How's that? sound more parental to you.

Kate 1:14:12
The more along the lines of why don't you just digest properly? No. Oh, I

Scott Benner 1:14:15
see Kate, you're doing it wrong. Or when you meet? Oh my gosh. I'm sure she'll have to be 100. Me everyone loves to be honored. But please be nice to each other. Okay, Kate, I'm going to hold on for a second. I'm going to say goodbye and I'll wrap some stuff up with here at the end.

A huge thanks to the contour next gen blood glucose meter for sponsoring this episode of The Juicebox Podcast. Learn more and get started today at contour next one.com/juicebox I want to thank the ever since CGM for sponsoring this episode of The Juicebox Podcast. Learn more about its implantable sensor, smart transmitter and terrific mobile application at ever since cgm.com/juicebox. Get the only implantable sensor for long term wear. Get ever since. A huge thanks to us med for sponsoring this episode of The Juicebox Podcast. Don't forget us med.com/juice box this is where we get our diabetes supplies from you can as well use the link or call 888-721-1514 Use the link or call the number get your free benefits check so that you can start getting your diabetes supplies the way we do from us med the Juicebox Podcast is full of so many series that you want and need afterdark s gotten Jenny algorithm pumping bold beginnings defining diabetes the finding thyroid, the diabetes Pro Tip series for type one, diabetes variable series mental wellness, type two diabetes pro tip, how we eat. Oh my goodness, there's so much at juicebox podcast.com. Add up into that menu and pick around. And if you're in the private Facebook group, just go to the feature tab for lists upon lists of all of the series. always free. Always helpful. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community check out Juicebox Podcast type one diabetes on Facebook. 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. Wrong way recording.com

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