Ep 14: Living with Type 1 Diabetes: A Personal Journey Towards Emotional Well-being

• Episode Transcript

  This is a rough transcript created with Artificial Intelligence technology. Any misspellings and sentence errors are a result of imperfect Al.

  Why don't you start a little bit by maybe telling us kind of your history with type one diabetes, what that has been like for you? Maybe?

  Um,

  yeah, just start anywhere. That feels feels good for

  you. Okay. Um, well, I was diagnosed when I was three years old. Uh, so my mom has two older brothers that are both types.

  And, um, she was the one who kind of recognized the signs and the symptoms and she figured it out. And then they took me to the hospital and it just confirmed what everybody had already figured out. But, um, it runs, it runs pretty strongly in my family. So, um, it hit early for me. And, um, so I'm 33 now I've been type one for 30 years and, um,

  I'm not sure. I mean, there's so much to it. I don't, I don't even know. Yeah, no, that's I love it. That's a great, a great

  starting point. Um, like yeah. How old you were and kind of how you kind of got that diagnosis, or it sounds like your mom already was familiar with some of the symptoms and signs. Um, what was it like for you growing up then?

  What did treatment look like? Um,

  you know, were you. Taking

  insulin where you, um, and, and what was that process like for you? Maybe more, you can talk logistically or emotionally, but I find that the two usually go hand in hand. So,

  yeah, for sure. Um, so when I was diagnosed, uh, the technology that we had available at the time was not nearly what it is today and, um, the influence that we have.

  Where much slower they didn't, uh, they didn't quite act in the same way. And so, um, when you're type one, you have to take multiple types of insulin. One of them is, uh, sort of an extended release that, uh, covers the facets. Where it's like everything that's happening underneath food, exercise activity, uh, you know, emotional stuff that can affect your blood sugars, things like that.

  So, um, at the time the insulin that I was on, it has this notorious like harsh peak to it. And so, uh, if I didn't eat on a schedule, regardless of whether I was hungry or not, I would have like horrendous low blood sugar. And um, low blood sugars. I'll give you a little bit of like info on that statistic, like symptoms and stuff.

  So low blood sugars can come with all these like hosts. Symptoms and side effects. So one of them is like really crazy shakiness and like confusion, uh, profuse sweating, sometimes vomiting, uh, for like severe, low blood sugars. And, um, you know, when I was a kid, if I didn't eat on this forced schedule, whether I was hungry or not, I would have horrible, low blood sugars.

  And, you know, I, I. Uh, some deep associations before juice that will never change. I can't eat oranges or drink orange juice at all now because of that. And you know, it, it was, I had to be regimented about eating and I always had to make sure that I had like candies or glucose tablets on me at all times.

  Um, I mean, I'm right next to my, I mean my bed right now, and I have a glucose packets right here. Like they're always within arms length, no matter what. Um, so that was, that was part of my childhood that obviously was like deeply impactful. And, um, other than my uncle, you know, I was the only person that I knew who had type one diabetes.

  Like I didn't meet other kids or other people with type one until I was like, oh, when did I meet Kat? Uh, fifth grade. So I spent, I spent most of my early years. You know, the freak with needles that all my classmates are like, you're allergic to sugar and I'm like, you're so wrong. You don't even know how wrong you are, but I'm just going to leave it alone and like, let you be wrong.

  Um, which is, uh, some something I've had to like carry through into my life. Like there's some pretty deep seated misconceptions about diabetes in the general public that. I've given up, being upset about, and I've given up fighting, uh, mostly because it's for my own sanity, but you know, when I was younger, it was always like, you know, I had to fight to, to advocate for myself because nobody else knew what they were dealing with or what I was dealing with.

  How it affected me. Like I could tell, I could tell people, oh, my blood sugar's low, but they don't know what that means. They don't know that that's a potentially life-threatening situation. That's immediate, you know? So it just, it's one of those things, like there, there's no aspect of life that like pipelines doesn't affect.

  But anyway, back to childhood stuff. Um, so I was like in and out of lows a lot, um, high blood sugars. The, the symptoms that they can have is like, you're just so parched. You can't be can't drink enough water. It's. No amount of liquid, that's going to make that dry mouth and, and thirst go away. Um, there for me, one of the biggest things is I get really ragey when my blood sugar is high and, um, it's taken me a while to kind of sift through like the physiological.

  Things versus the psychological things. And there's a threshold of blood sugar level above which like that irritability is. It's almost like physiologic. It's not that I'm angry because my blood sugar is high. You know, now did a tie I'm like irritable and short tempered and click the fly off the handle.

  Because my brain isn't functioning the way it's supposed to because it's like swimming and blood sugar and I can, I can physically feel it when my blood sugar comes back down under a certain level. It's like, there's this tightness in my chest that sort of eases. So, you know, when I was a kid, I was this wad of anger and resentment and.

  I was not like emotionally stable because of it. Um, you know, so I had a lot of problems with like outbursts and I would get into fights with people a lot. And, um, you know, kind of, kind of like swinging back and forth between these like low episodes that leave me like confused and uncomfortable and anxious.

  And then. Bouncing back up into high blood sugars where I'm like angry and pissed off about everything. So I just, you know, there was no stability in that. Um, and you know, because I was so young, like that was just life. I didn't know any better. Uh, ah, man, I wasn't going to get into it this student in the conversation, but I'll tell you anyway.

  So I had this moment, um, a couple of years ago I made. Very drastic lifestyle changes, like overhauled everything. I was doing what I ate, who I spent my time with, what I focused on. Um, you know, just like hook a complete 180 and. I found a ways to sort of stabilize my blood sugar. And most of it had to do with food and insulin management.

  And I had to just overhaul my entire regimen. But once I did that, I found this sort of like profound, inner stability that I had never even known existed before. And I remember very clearly. Uh, sitting at work one day and I was like, oh, I need to check my blood sugar, spend a minute, but I checked it and it was stable and it was exactly where I wanted it to be.

  And it hit me that that was the first time in my entire life at like 27 years old. That I had experienced that and it was like, somebody slapped me upside the head and I just started crying, like happy tears of just like, I finally found the thing that I, I didn't even know was missing. And then of course, I went around to everybody I could possibly find and be like, and they're like, okay, calm down.

  It's

  no, that's amazing. I, I love that. Um, because one of the things about. Mental health about counseling. Is that almost well? Our field has a really bad history of like change your thoughts, change your life. And when you live with chronic illness or chronic pain, even just anxiety, that's a physiological thing happening in your body.

  Yes. Sometimes your thoughts and your mindset can help calm your nervous system and it can help get you into a place where then you can go and do the other things that will then further calm your body down. But it sounds like you were fighting yourself all these years because, and I'm sh I have no doubt.

  You probably had lots of people try to fix you.

  Behaviorly sure. Yeah. I I've been to so many anger management classes. Like, uh, you know, I never got like violent with it, but outburst happened, you know, to that point. One of the things that I wanted to talk about today was that, um, I have this sort of like mindfulness practice with my blood sugars.

  And when I say that, I don't mean just sort of sit still and watch your thoughts. Like people generally see with mindfulness, it's like, There are certain specific thoughts, patterns, and trends that I experienced during Lowe's and during hot. And they occur before the physical symptoms. So, if I'm aware of what my thoughts are doing, I can catch a low or catch a high before I hit the point where I'm shaky and dizzy and I feel uncomfortable or something like that.

  So one thing that, um, I've, I've had to observe, but also distance myself from is when I'm low. I have like homicidal thoughts. They're not pretty. And if I start getting stuck in this rut of like that, I don't like this person, I want to do bad things to them. I'm like, Hey, check your blood sugar. I check it.

  It's almost always well, like without fail. So in that way, I've kind of learned how to like, both manage that. Emotional state, but also the physical stuff, because I can catch it before it gets physical. This

  is so important because a lot of us, I mean, a lot of the work that I do with clients is around self-compassion and non-judgment, and that sounds so

  fluffy.

  But if you were sitting there judging yourself for the anger and the thoughts that you had, you, you can't be mindful with it, and then you can't connect the dots. And it's just like, oh, I'm a terrible person because I have these thoughts and it's like, No. This is a normal response to what happens when your blood sugar is so low that your body could physically die.

  And so you're going into fight or flight. And what happens in fight or flight? You want to hurt somebody like you're fighting for

  my life. I fight. I am. I am always a fighter. I've. I could go into details about that one, but I know for a fact, I'm, I'm a fight, everything and everyone kind of person, when I hit that clearly kept

  you alive all these years.

  And now, you know, I think that's the big we are in fight or flight while we have to be. And then when we can finally find some peace and some calm, whether that is by getting. Like where we are in our environment or changing your diet or changing, like these things. Can't, they're just they're tools that can get us to a place where it sounds like you've gotten

  yourself.

  Sure. Yeah. Yeah. I really liked the tools thing because I find with, with blood sugar management, it's, it's about having the tools to address what I'm seeing and. One of the things I wanted to include in our conversation today was about how, uh, you can have these emotional responses tied up with your success.

  And I'm putting this in air quotes as a diabetic and, um, Uh, sidebar. I'm a heavy involved in the type one online community, but typically for those people who are either parents of children who are newly diagnosed and, uh, adults who are newly diagnosed and I participate heavily in those two very specific communities at the request of the admins of those four.

  Because I've been diabetic for so long and I've seen, you know, 30 years of what it's like to live with this stuff. So they've asked me to participate and, and, you know, give my perspective, but also the tools and the knowledge, and, you know, it's really easy to fall into this trap of like, oh, my blood sugar is high.

  I'm a failure. Or, oh, my blood sugar is low. I'm a terrible person. Or, you know, whatever it is, we have these quantifiable metrics that we must pay attention to at all times. And, you know, you're given these guidelines as a very specific range to keep your blood sugar. And if it's not inside those range, the range you've been given, it's really easy to think that you're failing or that you're horrible person.

  You're a bad diabetic, you know, all this stuff. That this is so loaded. There's so many things involved in it, you know, uh, then you know, you have to go to the, the endocrinologist every three months and submit your blood sugar log for them to look at and then be judged on whether you're a good diabetic or not.

  And that's one of the things that I've, I've really struggled with my whole life. Is this like deep seated resentment that I am must constantly be scrutinized by an external source that also doesn't have any personal experience with what I am dealing with on a minute to minute basis for my entire life.

  And I find that, uh, there's this. There's this mindset with the medical professionals where they think they know how to manage diabetes and because they think they know, and they give you guidelines. If you are struggling or you are not achieving success, then you are simply noncompliant with their guidelines and it's your own fault for stroke.

  And you're a bad diabetic, and I know you're shaking your head and I have this like deep well of rage about that, that I just kind of keep in the corner, you know, I would like, I would like to see somebody else, try to do it and, and have that attitude and maintain it. It's so

  unfair to have obviously lived experience, you

  know,

  It doesn't always, sometimes you need more, but I

  think lived experiences the piece to, to healing.

  It's yeah. There's a lot of rage here

  for me as well, where I'm like ma the medical professional, just not professionals, not listening. And, um, it's why I love functional medicine so much, although that's often very much out of reach for people, um, because it's often not covered by insurance. Um, and so there's, there's a whole bunch of that, but even in the mental health field, it's like all of my clients that have been to therapist after therapist and maybe, and I even have quite a few clients who have been in therapy since they were children.

  It's always the same message of like, you need to try harder. You're not doing this regimen. You're not practicing this enough. And it's like, but really, because I'm trying everything I can, but I don't, it doesn't work in isolation. It takes a team. And so maybe you can speak a little bit to, like, what was that turning point for you where you said you overhauled your life and.

  What supports do you think were, or do you know, were in your life at the time that kind of helped you finally make

  that jump? Um, okay. Uh, so long-term on uncontrolled blood sugars cause nerve damage. They cause microvascular damage. They can cause musculoskeletal problems. They cause uh, Every part of your body is damaged by long-term uncontrolled blood sugars.

  And I'm telling you this because that's integral to what happened and why it changed. So when I was 25 years old, I discovered a spot in my vision and it never went away. And I tried to convince myself for a little while that it was just. And then I went back to my glasses and I was like, well damn, okay.

  Now I have to go to the eye doctor. And, uh, so I went to the eye doctor and he diagnosed me with diabetic retinopathy. And what that means is that the. Blood vessels on your retina have started to break down and leak blood, and that can cause swelling and fluid in your eye. It can cause also, um, the overgrowth of new blood vessels to try to compensate for the damage.

  So uncheck this causes blindness. And, um, so I told you that my uncles are type ones. Well, one of my uncles died at 37 from type one complications, and I was only seven when he died. But what I knew of what happened and why was that he had basically gone blind and then slowly become disabled until he. I had no quality of life and lived in my grandparents' basement until he died.

  And so I, at 25 years old learning that I'm starting to go blind. I was like, oh my God, this is the end. I'm going to die. Just like uncle Dick in my parents' basement. I'm like, I'm dead. I'm dying. This is, this is the beginning of dying. Oh my God. And I remember just sitting in the parking lot after that, I appointed.

  Just like hysterical on the phone with my mom, just like I like I'm tearing up, you know? And, um, I was in deep depression and denial for about a year after that. And, uh, man, during that year, I was also in a pretty terrible relationship with somebody who just could not be this support I needed, especially not for that kind of heavy stuff.

  And that was 25 years old. So like, you know, all my friends, they're like healthy. They're pairing off with other people. There may be talking about getting married or graduating from college and I'm over here. Like I'm about to die. Um, I was not okay. And, uh,

  Kind of think of like how to pair this story down so much to it. I bet.

  Yeah. And it sounds like ultimately, I mean, we're talking about community and we're talking about

  like, not like going from not having to

  support, to having support and yeah. There's probably no clear linear connection.

  Yeah. I, I I'll say this.

  I didn't have. At the time because my parents live in Arizona and I live in Georgia and there's like 1800 miles between us and my then boyfriend was, um, not only emotionally unavailable most of the time. But also he had a job that had him traveling for half of every week. And then every fourth week he would be gone for five days.

  So I was both with somebody who was emotionally unavailable and also physically unavailable for more than half. And he was the type of partner that, uh, did not like when I had friends and hung out with them when he wasn't there. So I really didn't have much at the time and I felt so alone and, you know, um, Struggling with this, you know, existential crisis basically of like I'm going to die.

  Like my uncle did, and I'm only 25 years old and then didn't have anybody, you know, I spent a lot of time on the phone crying with my parents. Um, I also had, uh, man, uh, the panic attacks that I had during that point in my life were crippling. Um,

  Blood sugar, highs and lows. And like it's also intermingled. So yeah, it sounds incredibly difficult to

  manage. It was yes. And, um, at the time, so I had previously to that been deeply afraid of meeting. You would think living my entire life with a chronic illness where I'm required to take injections every single day, multiple times a day, I wouldn't have this problem, but that is not true.

  And, uh, I used to have this, a little device that, um, it was spring loaded and you would put the syringe into it and then you could not see the needle. And then you just put it up to your skin. You push a button, it shoots the needle in for you. And then you push the plunger in and you pull it out and everything's fine.

  So I had had one of those, my whole life. So I didn't have both the physical and emotional skills to give my self a shot with a bare needle. And then during this existential crisis period of my life, um, that device broke. And proceeded to lose it because I, it, without taking my shot, first of all, if I don't take any insulin, I'll end up in the hospital in diabetic ketoacidosis, which is potentially life-threatening.

  Um, second of all, I can't eat if I don't take insulin. So. No, it was like whap face first with, you're going to have to deal with this and you're going to have to figure out how to work through this so that you're not literally having a panic attack every time you have to take a shot because that's like five to eight times a day.

  And who wants to live with panic attacks that many times a day. Right. And was it

  difficult to get a new device? Is that why you had to switch

  to new. Not difficult, but you know, I can't just go to the store and buy one. I have to order one. And even with overnight shipping, there's still a whole overnight time period where I didn't have it.

  Um, so what happened was I ordered a new. One, and I either broke off it three times in the space of only a couple of months. And I finally sat down with myself and I was like, okay, I'm pretty sure that this is a universal sign that I need to figure this out. I love that you can't get much clearer than like, Hey, Hey, Hey do it.

  Um, so are you familiar with exposure therapy? Yeah. And it can be

  incredibly helpful or harmful

  depending on. So, yes. So in my case, it was extremely helpful because, uh, I don't really have a choice in not taking my insulin unless I want to kill myself. In a very slow, painful, ugly way. So I was like, okay, how do I, how do I get myself through this?

  And I have a syringe right here, I will show you. So I just, I just kinda like, like familiarized myself with the fake. And I would like, hold it in

  your hand, you touched it, you looked at it, you just got

  comfortable with it little by little. And you did this on your own. Yeah, I did, because I realized I don't have the coping skills to deal with it.

  I don't know how to handle this for myself, but I do know that I have to be okay with syringes. So how do I be okay with syringes? Well, I mean, You have dogs, I've trained dogs. How do you get dogs to be okay with certain things? It sounds trite, but it's not, you know, it's exposure and positive reinforcement.

  Right. So that's what I did with myself. And I would just like do the hard thing and then be like, oh my God. Yeah. Yeah. So like after months of doing that, I finally got to the point where I was comfortable with the needle and I could give myself a shot without like panicking, but I would still have to be like, okay, all right.

  On the count of three. Okay. And that one took me a long time to get over that part of it too. So anyway, this is like, I'm pretty sure it was like eight years ago now. Um, and I'm, I'm fine now. I don't even have problems with it, but it took a while. Um, so during all of this, uh, extreme, emotional growth that I was having to put myself through because I was faced with like severe complications and disability and a life that I did not want to live.

  I also finally came around to, uh, accepting that I needed to treat the retinopathy that I had been diagnosed with it. And so I sought out an ophthalmologist and, um, the treatment for me was, um, gruesome and panic inducing. Um, they give you injections. Into your eye? Um, no. Yeah.

  Yes. I can even see on your face, the memory of like, having to go through that, but just, I'm so

  glad you're able

  to talk about it right now because like this, this does, yeah, that sounds incredibly

  difficult.

  Um, That was traumatic. Um, they ended up hiring, they give me value at the eye doctor because I had a panic attack one time and I punched the doctor in the face because she was about to fight or flight.

  Yeah. So anyway, I was home one day from the eye doctor. Cause they, they put this, uh, this medication into the, uh, vitriol. Fluid and your eye, which is sort of like this, um, jelly part between the retina and the lens on the front. So the, they injected into that and then, you know, there's this sort of cloudiness and it can take a day or two to resolve.

  And just because I knew myself and my emotional state around it, I would always just take the whole day off from work, uh, especially cause they gave me value them. And I don't know if you have any experience with volume. How to say that while you're on it. Everything's great. When you're coming down off of it, the, uh, emotional processing that you should have been doing while experiencing those emotions happen later, but without any of the context for what was happening while it was happening and.

  Uh, given how freaked out and upset and panicked I was about all of it. I would basically like be unable to freak out during, and then I'd freak out later. So I'll take the day off and allow myself to just process everything. Couldn't see out of one eye, I had no depth perception. I was just a hot mess. I was a hot, hot mess and, and care

  of yourself during that time.

  I think this is another important point because. Um, while it might sound obvious to like, just take the day off. So many people continue to work through these really difficult emotions and these difficult situations and a part of self-care is taking the time

  for yourself and reducing

  the shame around not

  being able in quotes to

  perform or to produce or all of these

  different things.

  Yeah. I was really fortunate at the time that I had a boss who was at least compassionate and I told her what was going on. And she was just like, I was at work after a treatment one day. Cause I just went back to work after it. This was before they started giving me the value. And I was my, when I was dilated like this and I was.

  No, I'm not okay, but I'm here. And my boss was like, why are you here? Go? And I was like, I'm sorry, but I have stuff to do. She was like, do you think that, that stuff not still going to be here tomorrow? I'll get out of my warehouse, go, go home. And I was like, yeah. Yeah, she was great. Um, so after that I was like, well, I mean, you could take care of my thoughts.

  Okay. Um, While I was home during one of those episodes, um, episodes, but that's not the right word, but you know what I mean? Uh, while I was home, I was recovering and I. On the computer. And, um, I remember very clearly the house I lived in didn't have any, and it was the coldest day of the year. And so I was sitting in a chair, wrapped in a blanket in front of a space heater with a blanket, like over the space heater.

  So it was like making a 10th of warm and I was on the computer and I just had this, like this thought kind of come into my head. You know, I didn't feel like my thoughts. It felt like somebody was telling me something and it was, I have to figure out a better way because what I'm experiencing right now is traumatic.

  And I can not keep doing this to myself because every doctor I saw told me that I was going to have to get injections into my eye every month for the rest of my life. And I wasn't. Um, so lutely not, but with a lot more expletives, like, no, no, no, no, no. I just, in my soul, I just, I redacted that. I was like, I will not put myself through that.

  I can't, there must be a better way and I have to find it. So, um, I was also experiencing other diabetes complications. Specifically, very severe digestion problems. Um, and I would, uh, I would wake up in the morning. Vomit everything I had eaten the day before that had been undigested in my stomach all night, and this would happen pretty much every day.

  And if I didn't puke, I'd be so nauseated for the rest of the day that I couldn't even eat. And it obviously affected my blood sugars because you're supposed to take insulin for your food, but if your food doesn't digest, but the influent hits your bloodstream, you get severe lows. Yeah. Crazy highs later.

  And like I said, I was a hot mess, so, well, your, your

  illness was a hot mess. You seem to be figuring it

  out like a champ. Yes. Yes, you're right now. Okay. I'm going to come back to my story for a second. I liked the way that you said that, because over this process, one of the things that I realized is that with this type of chronic illness, if you ignore it, Gets louder and louder and louder and louder and louder until you are forced to pay attention to it.

  And sometimes that can mean you land yourself in the emergency room and. Sometimes it can mean that you have a public episode of mania where you end up in the back of a cop car, because that's happened to me with a different, low blood sugar before. And you know, you cannot ignore it because it will not be ignored.

  And it's an unfortunate thing that. How do you accept that? You know what I mean? If all you ever want is for this to go away, but the way to make it go away is to pay attention to it. Like, whoa, that's, that's going to screw with your head. Right. And one of the things I've learned as I've come through out the other side of this.

  Whole I had found myself in is that you have to kind of like pay attention to your, the wellness of your future self. And in order to take care of myself tomorrow, I have to take steps today to make that happen. Um, so back to how the change has happened. So while I'm on the computer and I'm desperately finding, trying to find anything that's possibly.

  I kid you not, I'm not exaggerating. I sat in front of that computer for 24 hours straight. I didn't do anything but eat and pee and then go right back to my chair. And I looked through every Google search, every internet forum I could find I was on Reddit. I was on all the diabetes forums. I was on Facebook, everything that I could possibly possibly find.

  And I found some horrifying things where I was like, oh, Nope. And I found a few little like breadcrumb nuggets. And then I stumbled across a blog from a doctor who is himself type one and also an athlete. And he had started experimenting with a low carbohydrate ketogenic diet for athletic purposes. But then discovered that it helped with his diabetes.

  So he wrote an ebook and I downloaded that immediately and I read it and I was like, this is counter to every single thing I've ever been told. There must be something to this because if everything I've ever been told right now is what I feel like I need to reject in order to find my way to success then.

  Okay. What's this all. And then after I read the ebook, uh, by the way that doctor, his name is, uh, Keith Runyon for context. And does he

  produce, I'm curious if he's still produces, um, information and, and people can go find this. If, if they're looking for.

  He has a blog. Um, I don't remember off the top of my head what it's called, but I can send it to you and you can put it in the show notes.

  Great. Yeah. Um, cool. So the next reference I have for you is this one line that was in that book, and this is the book that changed my life and it's called the diabetes solution by Dr. Richard K Bernstein. And.

  This book is like the encyclopedia of how to manage your blood sugars. Right. And I went on his website, I read his biography and he is, I think at this point she's like 86 or so. And he was diagnosed. When he was, I want to say a teenager and his blood sugars were wildly out of control. And, you know, he is experienced by the time he was a young adult, just like me.

  He was experienced stamping completions, and, you know, he had a wife and children and his, uh, low blood sugar episodes were so severe for him that they were affecting his relationships with his family, children and work all this stuff. And so. Same thing for him. He was like, I have to figure out what to do.

  I'm dying and I need to do something different. So what he did, um, his wife was a physician and because she was a physician, she could order medical equipment. And at the time this was, I want to say like 50 years ago. Um, so at the time at home blood glucose monitoring did not exist. You could only get your blood glucose.

  At the doctor or at the hospital, otherwise you had to do a urine test where you had to sort of like do a little chemistry and like put your in, in a vial and add stuff to it and it would change color. And that would tell you how much urine or sorry, how much glucose was in your urine. I was just very inefficient way of doing that.

  You can just like eat something and then pee and like, that's it. Whereas like now you can take your blood sugar and I'm sure it's a much shorter time between eating and checking.

  Oh, now I have a sensor on my arm and I waved my phone over it and it tells me what my blood sugar is.

  Um, so anyway, long story short, he gets this, uh, device that's meant to be for, uh, emergency rooms to test people's blood sugars, to find out whether they were unconscious from low blood sugar or whether they were just drunk because, uh, the outward symptoms of those two things. So he gets that he's an engineer by trade.

  And so he starts gate, uh, collecting data points on his blood sugar and monitoring them. And. He starts adjusting his insulin and his food based on the data points that he's getting from his blood sugar meter. And throughout this testing and experimenting process, he developed methods for how to manage your blood sugars.

  And then he went to his doctor about it and his doctor was like, what? No, why would we do that? Like even my patients wouldn't come to me for help. Um, I see you covering your face. I agree. Yes. So, um, unfortunately that attitude is still very prevalent today in the diabetes society. Um, so anyway, long story short, this biography deeply resonated with me and I bought this man book.

  I ordered it over. I took the next day off from work, even though I had already taken the day before and I sat there and I waited for ups on the porch and I got this book and this book is, is fat. It's. It's like a thousand pages of how to manage your blood sugars. And I read it cover to cover in like a day and a half.

  And it just blew my mind because. I I, in the 20, some odd years of being diabetic at the time, I had never heard any of this information from anyone. And that's the first thing that happened was I golf.

  Cause I was like, you were willing to let me die when this information was available. Oh, what.

  And I think what I'm hearing throughout the thread of your story is that you didn't have like support in the people around you, but you found ways to support yourself through this. And part of that was taking time. You allowed yourself time off from work. You use the computer that you had to. Not just research and go down anxiety, rabbit holes, which, Hey, maybe you've done that too.

  Cause I think we all have at some point or another, but you actually use that time to find something that was going to help. And then it just sounds like piece by piece, the book, the blogs, the.

  You

  know, the new information allowed you to start like putting the puzzle pieces together and building the support that you,

  that you have now.

  Yeah, totally. And you're right. I did, I, I remember clearly having to come to a realization that I was not going to find the support that I needed. So if I needed it, where could I find it? I have to find it for myself and. You know, if, if I'm the only one that I can rely on for that. Well, okay, cool. I don't know how to do that, but I'm going to figure it out and that's what I did.

  And, you know, since then, just slowly and incrementally, I have built a support system around myself that I do need and you know, I've, I've cultivated relationships and, and sought out information and. All the things that I did actually need, but I, I had to hit that low point of realizing I don't have what I need.

  And now what now, what do I do? Find it, go find it because I'm, I am the type of person that I want actionable solutions for the things that I find challenging and, you know, type one diabetes. It's deeply challenging. Okay. So if everything, I think I know isn't working well now it's time to go find what can work.

  Right. And so I found this book and, you know, it was, it was probably one of the hardest things I've ever done. For myself that has been the most rewarding because I had to unlearn everything. I thought I knew I had to accept that I was really sick and that I wasn't healthy and I couldn't pretend like I was okay anymore.

  And I had to allow myself to not be okay. And then I had to figure it out how to apply all of these tools for management of my blood sugars and my diabetes so that I could be okay. But I had to be okay with not being okay for a while. And it took, it took two years to really like adapt and understand what to do and how to do it and when to do it and what to eat and how to think my influence.

  You know, that kind of tinkering never ends, but you know, unlearning everything that you thought was gospel about managing your health and then finding this whole new thing. Sometimes the cognitive dissonance of painful,

  I think it keeps a lot of us stuck and we kind of get into the shame spiral of like blaming ourselves.

  But cognitive dissonance is it's incredibly difficult to navigate. And I'm, I'm curious as we kind of come up to the end here, I feel like you've shared so much about kind of how you, again, navigated seriously. Just the, the most difficult of situations.

  Um, you

  mentioned that you're in parent support or you're in like groups that are geared towards like helping parents support their kids.

  And I'm curious what kind of, I'm sure you've got lots of logistical advice. Find this doctor or do this thing, you know, but do you have some

  emotional,

  what,

  what can parents do either for themselves or to support their kids in dealing with the emotions that come along with this

  illness? Um, that, that question comes up a lot and I don't have any cut and dry answers for it, but.

  The biggest thing in my support network that I lean on are my people. And by my people, I mean, you know, my partner, my parents, my friends, my, my, my circle, my people not telling me what I should or shouldn't be doing. Not don't don't wag your finger at me. Tell me that I hear you, and I know you're struggling.

  I know that you will come through this and it will be okay. And, uh, one thing that I have with both my parents and my best friend is, um, if you want advice or do you want me to listen? And I love that because sometimes. Pop off. And sometimes I do need advice, but most of the time I don't need nuts and bolts advice.

  I have the nuts and bolts tools that I need. So what I really need is for you to just let me like blow off some steam and be upset about it for a minute, and then I'll be okay. Or, you know, it's very rare now, but on the rare occasion where I have a breakdown where I got to cry about. It's probably better.

  If you just let me cry and don't say anything, you can't make that better. So what you can do is be present and acknowledge that this is how I feel, you know, and I think for, for kids, it's so heartbreaking. We want to take the pain away for kids, you know, but we can't, and, and. We want desperately to give them everything, to make them happy and healthy and successful.

  And this chronic illness comes along and it's like, Nope. And so, so what do you do? Right? So you teach them the nuts and bolts of how to manage their disease to the best of their abilities within their capability and within the framework of the lifestyle that they want. And you just allow them to feel, however it is now I will say this hearkening back to the beginning of our conversation when I was talking about that sort of like ragey feeling with highs.

  Uh, one thing I think is really important is to recognize that because our blood sugars, uh, can create emotional side effects. Um, this is a two-fold thing. Uh, don't react to it. And by that, I mean, like if your kid's upset and spouting off with a mouse, so spout back at them,

  don't punish them. Don't tell them how wrong they are, how disrespectful they're being.

  Maybe you can have a conversation about it later in a loving and conversational way, but just condemning them for that reaction does no one any good. And it actually exacerbates.

  Yes. And what else exacerbates the problem is in the middle of being upset about something. If you ask a diabetic, have you checked your blood sugar right now?

  No.

  I've got, it's like telling someone to take a deep breath, calm down, just take a deep breath. You're about to get punched. Totally. Um, I I've started a go F yourself at quite a few people for that. Just like, I know that you're right, but I don't like that. You're right. Yeah. That's not the time. It

  really isn't the time.

  Like, in fact the time is like, it doesn't really matter if I go check it, like what the

  emotion is. It's

  here, so let's just

  let it blow over. Right. Totally. But, you know, uh, to that vein, um, I know you asked me about, uh, what advice they give to kids, but, um, something that I have learned with myself, I am well aware of how my emotions are affected by my blood sugar.

  And I have learned over time that the very best thing I can do for myself and my relationships with other people is to just keep my mouth shut and keep it to myself because it's transitory and. It doesn't matter that I'm like, ragey in that moment, I can not make it somebody else's problem, but I can accept that, you know, this is how I feel right now.

  And I can't change the fact that I feel this way, but I can't take it out on everybody else. So I just need to be quiet and keep it to myself and give myself time to be okay until I am. And that's that's, uh, uh, Hmm. It does.

  It does, but it's perfect advice. And it actually is what I would say to a parent that I, if I were working with a parent on this as parents, we model behaviors to our kids.

  And so if you can be silent and calm while they're raising. You are not telling them that this behavior is always okay for the rest of your life. And you can do this whenever you want. That's what parents think. But your quietness and your stillness actually teaches them. Actually, this is what we do.

  When we have these emotions, we calm ourselves. We center ourselves and we wait for it to pass. So I

  think it's beautiful advice. Totally. I do this with, uh, my stepdaughter, you know, she, she struggles with anger management stuff as well. And I feel perfectly qualified to help her with the phone because I've, I've dealt with this my whole life.

  And, uh, one thing with her that I do is if I recognize that she's getting overwhelmed and upset, I'll ask her, do you need a minute? Do you need to go to your room? Do you want me to leave you alone? Because if you do. Take it. And 9.9 times out of 10, the answer is yes. And she goes away for a minute and she can collect this stuff and then she can come back and she's cool, but I can't be upset that she's upset because then we end up in this feedback loop.

  Absolutely.

  Okay. Alex, thank you so much for sharing all of your story. I feel like people are really going to get a lot out of this. The emotional ride is something that. Really hard to put into words. And so to hear someone else's personal story, and some of these really specific examples is it's just really helpful.

  So I really

  appreciate it. I do too. I'd like to close with, uh, I have come out of all of that struggle and distress that I was in and found that stability. And I know how to come back to that. So life now is I could not have even conceived. At the beginning, I still have a chronic illness that will never change, but I am not in that deep, well, of all the things that were, were digging me down into it anymore.

  And that's, that's one of the takeaways that I wanted to bring to.

  I think again, that's so important because we often just hear about like how we got over it. And so in your story, we're hearing what the struggle looks like while you are working through it. And

  that's just so helpful. Yeah. Thank you.

Episode Summary and Notes

Meet Alex: a remarkable individual who has lived with type 1 diabetes for 30 years. Alex shared her deeply personal story, offering insights into her struggles and triumphs, as well as shedding light on the challenges and misconceptions surrounding diabetes. In this blog post, we'll delve into her history with diabetes, her experiences growing up with the condition, and the transformative journey that allowed her to find stability and inner peace.

A Childhood Diagnosis:

Alex's journey with type 1 diabetes began at the tender age of three. Her family had a history of diabetes, with her mother's two older brothers both living with the condition. It was her mother who recognized the signs and symptoms in Alex, leading to her diagnosis. This familial link highlighted the genetic predisposition to diabetes in their family.

Growing Up with Diabetes:

For Alex, growing up with diabetes was no easy feat, especially given the limited technology and treatment options available during her childhood. Managing type 1 diabetes requires multiple insulin types, including an extended-release insulin that covers various aspects of her daily life, such as food intake, physical activity, and emotional well-being.

Emotional Turmoil:

Alex's journey with diabetes wasn't just about physical challenges; it deeply affected her emotionally. Fluctuating blood sugar levels had a profound impact on her mood and behavior. High blood sugar left her feeling parched and irritable, while low blood sugar triggered extreme shakiness and rage. These emotional roller coasters created instability in her life, causing her to lash out and struggle with emotional regulation.

Overcoming Stigma:

Alex's experiences with diabetes extended to societal misconceptions and stigmatization. She had to fight to advocate for herself, as few people understood the gravity of her condition. Explaining low blood sugar to others was often met with blank stares, leaving her isolated in her struggle.

A Profound Transformation:

Despite these challenges, Alex's story takes a turn toward hope and resilience. A few years ago, she decided to make drastic lifestyle changes, overhauling her diet, daily routines, and priorities. These changes were driven by her realization of the profound impact of uncontrolled blood sugar on her health. Alex discovered a newfound sense of stability that had eluded her for 27 years. She learned to manage her blood sugar more effectively, not just through physical means but also by developing a mindful awareness of her emotional responses. She recognized that certain thought patterns correlated with blood sugar imbalances, allowing her to catch lows and highs before they became physical emergencies.

Alex's emotional journey was marked by a powerful moment of self-discovery. For the first time in her life, she experienced inner stability, leading to tears of joy and a newfound sense of self-compassion. She had transcended the struggles and turmoil that had defined her life for so long.

Challenging Medical Paradigms:

One significant aspect of Alex's journey was her struggle against medical professionals' judgment and preconceived notions about diabetes management. She deeply resented the constant scrutiny she faced during medical appointments and the rigid guidelines she was expected to adhere to. She highlighted the need for a more nuanced understanding of diabetes, emphasizing that external judgment and noncompliance accusations only perpetuate the emotional burden on individuals living with diabetes.

The Role of Supportive Relationships:

During the podcast, Alex also discusses the critical role of supportive relationships in their journey. They express gratitude for having a compassionate boss who encouraged them to prioritize their well-being and take time off when needed. This support allowed Alex to begin acknowledging and addressing their struggles.

The Turning Point: Seeking Solutions

Alex recalls a pivotal moment when they were home, wrapped in a blanket on the coldest day of the year, reflecting on their traumatic experiences with diabetes. It was during this introspective moment that they felt compelled to find a better way to manage their condition. They realized that they couldn't continue subjecting themselves to injections into their eyes every month. This determination to find an alternative solution became the catalyst for their journey towards better health.

Supporting Children with Chronic Illnesses:

Alex offers advice for parents supporting children with chronic illnesses. She emphasizes the importance of creating an emotionally safe space where children can express their feelings without fear of judgment. It's crucial to listen actively and ask whether they need advice or simply someone to listen. Encouraging children to take time for themselves and teaching them emotional self-regulation can help them navigate the emotional challenges that come with their illness.

Conclusion:

Alex's story is a testament to the resilience of the human spirit and the power of self-discovery. Her journey with type 1 diabetes, marked by physical and emotional challenges, ultimately led her to a place of stability and self-compassion. She learned to harness the tools needed to manage her condition effectively and, in doing so, gained a newfound sense of control over her life.