#649 Quadoimmune

Christina has four autoimmune diseases.

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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 649 of the Juicebox Podcast.

Today you'll hear me talk with Christina. Christina has diabetes, Addison's disease, gastroparesis and fibromyalgia. She is one autoimmune disease away from our basketball team, as they would say. Please remember while you're listening, that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. I went away last week with my family and I've rested haven't spoken in this microphone for about nine days. And my voice is feeling very strong. I feel very deep. I have a lot of timber. This will go away this week, as I do five interviews in the next four days. Probably rag myself right back to where my voice is cracking and everything while I'm trying to do the openings for these podcasts. But that's not your problem. It's mine. Let's get to the show, shall we? Oh, you know what I haven't said in a while. Well, in my life, I haven't said in a while but your life I probably just said it yesterday. Now I ran out of music Hold on a second.

If you have type one diabetes, and are a US resident, or you're a US resident, who is the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juicebox. Join the T one D exchange registry, complete their survey. And just a few minutes later, you will have helped people with type one diabetes. That's it when you fill out the survey. It actually helps people and the podcast benefits. So it's like a two for one deal. You're doing something nice for people. And me, too. I mean, do you one day exchange.org forward slash juice box? Get over there right now. Do your business. I mean, if you listen to Christina, you know, I'm saying listen, right now I've confused myself. Listen to the podcast and go fill out the exchange. Oh, you know what else and then support the sponsors? Click on their links, buy their products, let them know you came from me. This show is sponsored today by the glucagon that my daughter carries. G voc hypo pen. Find out more at G voc glucagon.com. Forward slash juicebox.

Christina 2:35
My name is Christina. I have been a type one diabetic for 15 years. Although I was misdiagnosed for almost 10 years is type two. And I am ready to share my story.

Scott Benner 2:50
I have to tell you that being misdiagnosed for a decade is a long time and I've heard a lot of people misdiagnosed with type two.

Christina 2:58
Yeah, yeah. I found out it's not an unusual story at all. I am technically Lada which has a lot more people are misdiagnosed with type two initially that have a lot of so. But yeah, I was on insulin and the first year had DKA a couple times. I mean, all of the signs were there that this was not a type two. But you know, doctors get it in their head. That what you look like and

Scott Benner 3:28
yeah, yeah, I type to care. I mean, type twos don't go into decay, right?

Christina 3:35
That it's rare. And I even had a doctor that said, Well, this is kind of unusual, but I'm still confident you're type two. And I just was going really I just I didn't know enough. I wasn't really taught anything, initially from diagnosis either. And I just didn't know the right questions to ask. I didn't know to push it. I just thought, Okay, I'm a little bit different than but yeah, I just, I had other friends that were type two. And nothing I was going through ever seem to match what they were going through. But I really and then I actually had a doctor once looked at me and said, well, it doesn't really matter what type you are the treatments the same. Is it No. And I just kind of like, and I believed him. So I really didn't know any better than listen to what I was being told. And honestly, it really just took years for me to finally go something's not right here in to learn what to go in and ask for. So I just finally went in and I said I want to antibody test in a C peptide. And even the doctor was like, I don't think that that's necessary. And I went no, I want it. And I just would not stop saying that until she finally went okay. We'll order it. And then I still remember her calling me up and she had the most cheapest voice where she went. You're right you're not type two.

Scott Benner 4:55
What What led you to believe that that was the case that you were typed that you were a type one.

Christina 5:02
So honestly, that change happened for me, one of the families that I was babysitting for regularly, their son was diagnosed with type one. And that kind of was a game changer as I went through that diagnosis process with them. And finally started learning a lot more about type one in the differences through experiencing that with them. And that finally led me to start Googling more myself and trying to learn more about the differences. And that's when I first read about Lata and I went, Oh, that seems to fit me a whole lot more than type two. And so that really was the start of the change for me was just learning how to treat his type one, and realizing there was a lot more similar similarities to his diabetes than I had ever met with any type two.

Scott Benner 5:53
What so tell me a little bit about lotta because I, I freely admit that I don't know that I could describe it properly, What's your understanding?

Christina 6:04
So, essentially, first of all, it's a latent autoimmune diabetes in adults. So I did test positive for two of the antibodies, although not for Dad, which was kind of interesting. But two of the other ones, I tested positive for the antibodies, and then I've had a very slow loss of my insulin production. So whereas most type ones, usually within the first year, lose all of their insulin production. Mine was really slow. So I honeymooned actually, for close to 11 to 12 years. And I do actually credit some of that to being on insulin pretty early. So as I was on insulin, in that first year, that helped protect my pancreas and didn't have to work so hard. And that.

Scott Benner 7:02
Christina, you're gone. So you blanked out for a second, your pancreas didn't have to work so hard.

Christina 7:10
My pancreas didn't have to work quite so hard. And that helps protects the beta cells that you have left from being stressed. So you can prolong your your honeymoon by using really long with LADA by using it by and by using insulin. And I did actually have it in chronologist, early on, that put me on a 730 split insulin. And that worked really well for years for me. And he still at the time, though, was thinking I was type two. So he wasn't perfect. But he did find the right combination of insulin to kind of help take the stress off of my pancreas because I was still producing some of my own at that time. And yeah, so

Scott Benner 7:59
the question about that. So you're you're living for 10 years with a misdiagnosis. Looking back now, because that you know, you've lived five years with a diagnosis. Looking back now, what were the personal harms to you? Like, of the mistake?

Christina 8:15
Yeah. So when I was diagnosed as type two initially. And honestly, that was just an assumption that was kind of accidentally discovered in the ER, although I had been sick for months, and the doctors hadn't been able to figure out what's going on. I mean, I had a lot of the classic signs of diabetes. And they just never thought to do a finger prick. So I just happened and they came in and they're like, are you diabetic? And I went, well, not that I know. But something's not been right for a while. And they're like, well, your blood sugar's like 350. And I, that was like a fasting blood sugar because I hadn't been keeping food down. So that was interesting. But so I met, I mean, they just sent me home from the ER and they just said, Well, you need to follow up with your doctor, because you might be diabetic. And then the doctor just said, the typical put me on Metformin gave me a meter to test a couple times a day. Well, that first three months, I did everything exactly what I was told to do. I changed my diet. I took my meds I checked my blood sugar. And I went in for my three month checkup. And my a one C really had not moved all that much. I still was getting to hundreds and three hundreds regularly on my meter. And the doctor just said, Well, you're not doing good enough. You need to do better. And to me, that was basically motivation killer. I went, oh my goodness, I have been killing myself to get these numbers under control. Now I was only testing like two or three times a day. So because that's all I was told to test. So I didn't realize that I hadn't really even gotten that much better. But essentially at that point, I gave up. It just went Why am I killing myself to get this better? To have very little improvement? And I? Yeah, I basically went, Okay, well, I've already tried my hardest, and I didn't do any better. So I give up. Why am I doing working so hard? If it's not going to get me any better to my gold and my, my doctors just gonna still tell me I'm not doing well enough,

Scott Benner 10:22
though there was no real difference between the effort and then on effort. Right, right. Right,

Christina 10:26
exactly. I think my agency came down like one point, it came from, like 12 to 11, or something like that. I mean, it was very little improvement. So honestly, I am an all or nothing kind of person. And I put all my heart into it for no real improvement. So I went back and pretended I wasn't a diabetic anymore. I did still take the Metformin. But I went back to my old diet, I just really was like, Okay, if there's no difference, then why am I working so hard? And that lasted for about three or four years where I just, that's where I ended up going into DK a couple of times, because I really wasn't trying and even once I put on, but was put on insulin. I was only half heartedly taking it. I wasn't being consistent. I wasn't. I wasn't even often testing before I took insulin. I mean, I just was, well kind of take it to say that I kind of tried, but, and then. Yeah, it just really was a mood killer for me. So I really was like, why am I trying so hard. And I would go through periods of time where I'd kind of try again a little bit. And nothing just really seemed to work. I was not getting my agency anywhere near where I supposed to. And I had the doctors that were using the scare tactics of you need to do this. So you're going to kill your kidneys, you're going to lose a foot foot, and I just went. But I've tried doing everything you said. And it didn't work. So I guess this is just my life.

Scott Benner 11:56
Can I ask you when you first of all, how old are you at this point?

Christina 12:01
I am not 42. You are now you're 42. So I was 27.

Scott Benner 12:05
So you're in your late 20s ish. And so when you tell them, Look, I'm trying as hard as I can. And they're saying do better. They don't offer any change in change and no tactics, or it's just no, you're not trying hard enough. So do you think their assumption was that you weren't even doing the things they told you to do?

Christina 12:25
Oh, yeah, I had a doctor that looked right at me. And I said, I am trying. He's like, I don't believe you. And I went, Okay, well. Yeah. So I mean, I would, I would kind of go through like a month or two, where I really would kind of resolve, okay, I'm going to try again. And again, I would not see really any effort, and I still would go in and get yelled at again. And so it really the second time I was in DKA, I did have a doctor that finally really got my attention. He looked at me and he said, If you don't change what you're doing, you are going to be in kidney kidney failure are dead in a year. He's like, you cannot keep having blood sugar's this high. And he's like, You came really close again this time. And he was the first one that looked at me. And he said, I know how hard this is. I know how impossible this feels. But you have got to find a way to get this under control, or you are not going to survive this.

Scott Benner 13:25
Did that doctor offer any ideas? No,

Christina 13:28
no, no concrete advice. But

Scott Benner 13:32
he was really worried while he wasn't helping you.

Christina 13:35
Yeah, so I finally decided I couldn't change. I couldn't do this all or nothing. So I made it my goal every month, I was gonna reduce one bad habit. So for me, the first thing was no more soda. No more sugary drinks. No, but like, I just was like, okay, I can do one thing. I can do one thing. And so I just got into the mindset. That's also about the time that I did get the endocrinologist that finally got me on the 7030 split insulin that seemed to work a lot better than within what we had been trying. And I just thought, Okay, I'm going to tackle one bad habit at a time rather than just trying to totally change everything at once. And that works a lot better for me. Once I got one bad habit out of the way, then I could work on another one and with his endocrinologist help, and getting on the right combination of insulin, I finally started to get better. I mean, I still never had an a one seed under maybe seven and a half. But I at least got out of the double digit a onesies for the first time. And when I got down to about 7.5, I usually was an upper sevens during that point. I thought, okay, they're not yelling at me anymore. They're not telling me. I'm a diabetic and so Yeah, but it became more of a change one habit at a time because trying to change everything at once. Really, I just couldn't sustain it. It was overwhelming. I just

Scott Benner 15:12
what are some of the other things that you that you change besides the soda?

Christina 15:17
I did that and then I tackled, okay. Really be consistent on my insulin. Take it when I'm supposed to test my blood sugar when I'm supposed to do other than I kind of know how I feel. I really find that got support for getting enough strips to test as often as I should be testing, which for me, I although they still had me on the test before you eat and test two hours after kind of standard test, when you get up in the morning, test before you go to bed at night. I got an A, they really wanted me on a more regimented eating schedule where you eat at these times, and you take this much insulin, which I still wasn't taught carb counting, I still wasn't taught some of the things that I really should have still been doing but and I was taught to do corrections. So I wasn't letting myself if I was too high after a meal. Although it was a little bit difficult in the 7030 split, I and then I kind of learned my meals, okay, this is how much insulin I need for this meal. So I wasn't necessarily taught carb counting, but sometimes some meals I knew would hit me a little harder. And I would take a little bit of extra even that was a little bit more than I was told this was to take it that meal so and a lot of it was really getting the diet under control. I definitely had a sugar addiction going into this diabetes and was not eating a very healthy diet. So it was more of switching out high carb foods for lower carb foods. And I wasn't striving for perfection anymore either. Like I got into the mindset of I can't stand the thought of never drinking soda again. So I'll drink one once a year. And then I'm like, I will have one day a year will eventually one soda because for me the thought of never having it again, was unthinkable. So I started doing that with other foods to other favorites. Right? Yo, okay, I'm not going to tell myself, I'm never going to eat this again. But I'm going to save it for you know, birthdays or celebrations. You know, holidays. And that worked. I could I could not eat it. Knowing that I would have a time coming up again a few months where I would get to enjoy it again.

Scott Benner 17:36
Can I ask you? Maybe this is not related, but what part of the part of the country do you live in?

Christina 17:45
I've lived in a lot of places. So did you grow up? I grew up in Southern California. Interesting. Okay. So that's not where I am now. And that's not where I was when I was diagnosed. But yeah, so

Scott Benner 18:00
I just asked because I mean, I think so does one of those things that is just universally understood. Right? Like, we all know, that's not good for you. And yeah, and yeah, I wondered where you grew up that that it was, you know, such a big part. Oh, I

Christina 18:19
didn't I didn't grow up on it. That was definitely an adult breaking free. Get to do what I want.

Scott Benner 18:27
Okay, no,

Christina 18:29
I, I Yeah. I mean, it was something that was a special treat as a kid and I loved it. And I always want to drink a bit. It just honestly, for me as an adult, it was my source of caffeine. I wasn't a big coffee drinker. And it really was what I use to sustain my energy during the day. And honestly, I, I didn't gain weight. I didn't I mean, there really didn't seem to be any immediate consequence to it. I knew it wasn't the greatest for me, but there was no immediate consequences at the time. So I yeah, I kind of used it thinking, Well, if it ever starts to cause problem, then I'll stop. kind of mindset.

Scott Benner 19:13
So are you think you were addicted to the caffeine or the sugar?

Christina 19:17
Oh, yeah, it was. It? Definitely. I mean, I definitely. I actually had a job at the time. I was working about 60 hours a week and most of my food is coming from the drive thru or the freezer because I just, yeah, working long hours and I and I was working as a nanny with young kids and anyone knows that's exhausting. So the last thing you come home and want to do is make them make healthy food. So I mean, I just I was living on fast food and freezer meals and stuff that was not good for being a diabetic. So it was it was a major life change for me to get diagnosed. But again, that first three months I knocked myself out I went I I, I really put my heart into changing my diet. I switched to diet soda, which, in itself, and I just ended up giving it up because that didn't end up being the greatest either. But yeah, I mean, I just I really I, I got my I was actually making meals, making an effort trying to make things from scratch, at least trying healthier alternatives. And then I got my agency back and they're like, you're not doing enough. Like, I don't know how I could do any better. Like,

Scott Benner 20:37
what? What's my question here? So how long does that go on for like, like, how many years? Are you in a double digit a one see

Christina 20:46
that I was actually trying to go back and calculate that was about my first four years. Okay. Wow. And then that's when I had kind of the dka again, where the doctor really got my attention and said, Hey, you can't keep living like this. You're gonna kill your kidneys, you're gonna kill your health. You're you. I can't guarantee you're going to survive the next day. Okay. And I just went, okay. You're, I mean, that was the first time where it really scared me how close I really when I went into that. I felt like I was dying that time.

Scott Benner 21:19
But you, but you're still been treated as a type two, and you believe you have type two diabetes?

Christina 21:24
Oh, yeah. Oh, yeah. Oh, yeah. They, they keep telling me? Oh, no, you're type two. And I just went, Okay, it must be really different from the other type twos. I know. And so yeah, and honestly, what

Scott Benner 21:38
do you what do you do next time when it when it ramps up? When you have that, that next DK? And you're like, Okay, I'm gonna try harder, whatever that means, like, what does that end up? Meaning like, is it

Christina 21:49
again, changing my diet, getting my eating habits and my really terrible eating habits under control, taking my insulin, consistently, testing my blood sugar when they, you know, when they've told me that I'm supposed to be testing? And, yeah, just really the two big things, were getting my diet under control and taking my insulin consistently. Even when I didn't feel like it even when I didn't want to tell myself No, this was what I need to take it. Honestly, I had never been one that like needles before. And the thought of having to deal with needles every day for the rest of my life was something also really just emotionally hard for me to deal with because I didn't like it. And I kept getting told, I kept getting told you get used to it, you'll get used to it, which on the one hand is kind of true. But on the other hand, I didn't like it any better. I think it didn't help me start liking,

Scott Benner 22:48
waiting for someone to come on here and how much they like needles. It hasn't happened so far.

Christina 22:53
Yeah, so I just, I just went, Okay, this is what I have to do. And I have to accept that this is just going to be part of my life now. And I can't keep telling myself, I don't feel like doing this.

Scott Benner 23:06
So so let me fill this in here. So latent autoimmune diabetes in adults are a lotta is a disorder in which despite the presence of isolette antibodies at diagnosis of diabetes, the progression of autoimmune B cell failure is slow. Yeah, so here it says, it could be at least the first six months, but it sounds like you were getting help for a while, like long.

Christina 23:32
Yeah, because I wasn't being a good diabetic, they put me on insulin pretty quickly. Because the oral medications alone weren't helping. Now again, then for that first four years, I was not consistently taking the insulin. But I've actually no other people that have lasted as long as I did, by and it seems like early Insulin is the key to support your pancreas because it's trying to make more and more and more insulin to address the high blood sugars. And that just puts a lot of stress. So by supporting my own pancreas, insulin production that seemed to be able to preserve my beta cells, a really long time I've heard I've actually heard two to 10 years is the average for people with LADA for how long the honeymoon.

Scott Benner 24:27
It's sad, though. When you talk about it, when you say I know you're tongue in cheek, I can hear it when you're like, you know, because I wasn't a good diabetic. They gave me insulin. But yeah, but the real sentence there should be because I was misdiagnosed as the type. Right. Right. And I didn't. And they figured it out. Right. They gave me

Christina 24:46
the right that would have been the better, better you had

Scott Benner 24:49
there happen eventually for the wrong reasons.

Christina 24:52
Exactly. Exactly. So they were just trying to get my blood sugar's down and it wasn't working. Just the orals so they thought well then like we guess we need to give you some insulin. So yeah, I mean I'm I'm pretty much completely insulin dependent at this point and just have a very different life now then

Scott Benner 25:15
we'll do they do they treat you now? Like do you have a your proper diagnosis now are you a type one are you lotta

Christina 25:25
so on paper, there is no diagnosis for Lada. So I'm on paper now type one. So that was almost five years ago. And what that eventually meant for me though, was, once my diagnosis was changed on paper from type one to type two, I suddenly qualified for an insulin pump. And then I qualified for a CGM. So I was able to get tools that I didn't have access to as a type two, that suddenly was no problem once they were able to change the diagnosis on from type one that opened a whole new world. And then that caused me to go get involved in the type one community and suddenly meet people that was like, Oh, my goodness, your diabetes is exactly like mine. So that just also, and then there was a lot of guilt that I couldn't, with diet and exercise, get off the insulin, that suddenly was gone, that I really felt guilty. Still, as a type two being on insulin, I felt like that still was a failure somehow. Because even once I got my diet under control, and everything, I tried, actually a few times to wean off the insulin, and I couldn't. And that made me feel like and I mean, I actually was able, at one point to lose a bunch of weight. And I tried to get off the insulin, and I couldn't. And that made me feel like there I was doing something wrong. Because why can't I? I mean, I was still being told, Oh, yeah, if you get this under control, you should be able to, you know, get off your insulin. And when I couldn't do it, I kept feeling like, there was something I was doing wrong. So there was a big emotional shift, also getting correctly diagnosed as type one, right? That went, Okay, this is, this is not my fault.

Scott Benner 27:16
But no one. No one Christina, no one ever said to you, if you do this, by using these tools, or taking the steps, it was just like if you would just do this better or differently, but with no context of what that meant. There was never context.

Christina 27:36
No. And actually, I had an inner chronologist. Were right about the time where I decided I was going to push for the type one diagnosis, my agency started going up just for no random reason. And I had my a one C go from like a 7.5 to an 8.9 and a three month period of time. Now it just did happen to be over the Thanksgiving Christmas time. But I was still being a very discipline eater. But I asked my endocrinologist I said, so my Wednesday is going up, what should we do? And he's like, Well, you probably ate more sweets over the holiday than you thought you did. And I said, No, I didn't. I still I said I had maybe on the actual thanksgiving on the actual Christmas. Yes, I had some treats. But I said, I my regular diet, the rest of the, you know, rest of the normal days. And he went, Well, you still must be eating more than you thought you did. And I went, listen, he didn't he didn't increase my insulin. He they just said you probably ate more than you thought he did.

Scott Benner 28:39
He should have to do a podcast because you can ask leading questions like that you're not supposed to say I assume this is what you think sometimes I do it too. But I mean, but not the health situation in the health situation

Christina 28:50
that I went. And that was my final straw where I went, Okay, something's not right here. Because I did not Well, I really think it's just my insulin, my own insulin production went down. And we needed to have my insulin again. So but he just he has literally looked at that increase of a winsy and told me Well, you must have been eating more sweets over the holidays than you thought you did. And I just went, that was my final straw where I went, something's not right here because I know I didn't do that. And my agency what for no apparent reason. So start

Scott Benner 29:25
to figure stuff out for yourself then. Right? So

Christina 29:27
that's when I went okay, I really don't think I'm type two anymore. And I learned Okay, what do I have to ask for? So I actually never went back to the endocrinologist again. I call it my insurance and what who else can I go to? Because that was the most ridiculous answer I have ever heard. To explain you what my agency without for no apparent reason. So

Scott Benner 29:45
you must have done this. I didn't write well, you must have but I did. Yeah. I will stop talking about it now. That's exactly

Christina 29:52
exactly so I went to a brand new endocrinologist and I walked in and I went I went to see peptide antibody panel and again she also looked at me With Oh, I'm pretty confident you're type two

Scott Benner 30:04
for five seconds. Yeah,

Christina 30:06
exactly, exactly. She looked over my records. I got 10 for my other Endo. And she went no, no, I'm pretty confident you're type two and honestly, yes. Have I always been a little overweight? Yes. But I just went, I just kept saying it over and over and over again until she went, okay. We'll order it. I don't think we need to. But while we're at

Scott Benner 30:28
it, she comes back to you and says, Oh, yeah, you have type one. Exactly. Or whatever.

Christina 30:33
Yeah, she's like your, your your see peptides really low. And yeah. Your antibodies are positive.

Scott Benner 30:40
So did that. Did that? Start with Hey, Christina, I want to apologize. You were no,

Christina 30:44
nope, nope. No apology. She just went. She just went, hey, you know, some interesting results.

Scott Benner 30:52
You seem to understand with the internet and everything and and oh, by the way, all your personal experiences for the last, you know, decade. Yeah. That that nobody's been listening to you about any sense of relief? Or did you feel like you

Christina 31:08
Oh, I so hard. I so badly wanted to say I told you. So. I really had to refrain myself from saying I told you so to

Scott Benner 31:19
her to call the other doctors to write

Christina 31:23
I actually wanted to go back to every doctor that I had ever seen. told me your life to go, Oh, my goodness, look at this if you had just. And when I researched how to find out what type you are and realize how simple of a blood test it was. I wanted to go back to every doctor and go, Why? Why could you not just order this simple test? To find out like, I just I wanted to go back and go look how easy it was?

Scott Benner 31:51
How many of those doctors were male versus female? Did you see any difference? Like that kind of like, you know how sometimes you're seen first kind of undervalue women sometimes the first

Christina 32:06
endocrinologist I saw after diagnosis was a woman. And I actually really kind of liked her. But then she went on maternity leave and never came back. All of the rest were male, until this one I switched to that I really pushed for the testing. And she wasn't going to listen to me either. So I I don't know. I ended up being with her for quite a few years. She was one of those she gave me everything I asked for, but didn't ever really offer any help. So I kept going her because she gave me everything I asked for. But she didn't ever really teach me anything or give me any guidance. So But then, the insurance I was on at the time, there were very few to choose from. And honestly, she was better than the guy that told me that I must have just eight more than I thought I did. So

Scott Benner 33:00
you're making me feel like, you know how we always say that the American healthcare system, we always want to fix a problem after it happens. But we don't want to do anything to prevent it. But I don't know if it's true that we don't want to or if it's possible that most doctors don't have the first foggiest idea of how to accomplish that. You know me like the idea of getting ahead of a problem being thoughtful, instead of just it because because everything you've said, makes me feel like their job is just to go, oh, you this concrete thing is happening. And this is what we do for that concrete thing. And that's it, I get I say the thing I'm supposed to say. And whether it helps you or not doesn't matter, because I've said it and that's my job.

Christina 33:44
Yeah, yeah, I don't know that I've really felt that I can do much to change doctors at this point. But honestly, every person that I hear that's gotten diagnosed with diabetes, I tell them go in and ask for an antibody panel and a C peptide. I'm like, even if you think you're probably type two, basket escort, you know, just there's no harm and I'm running that just to make sure. And I've had a few others that I've heard of like friends of friends that were that were admitted with DK and still told the type two and I went oh my goodness, please tell your friend ask for this testing because yeah, that's really unusual. And honestly, I did have a doctor looked at me once and he went adults don't get type one. Perfect. That was his answer to me. And again at the time, I believed him because I didn't know any different. And I asked him why doesn't Why doesn't my type two, like my other friends with type two? And so I just it didn't ever sit right with me. But I didn't know enough and I didn't and I really just was taught to trust with the doctors knew what they were talking about. And so I just accepted it because I really didn't know any better back in those early years. And but the things now that I got told I just thought my goodness I couldn't I cringed that they're still telling people that so oh they definitely Yeah, exactly. I hear it's too all the time. Oh my goodness, I don't know what we can do at this point.

Scott Benner 35:12
I think sometimes it's luck of the draw. You just get a good one or you don't.

Christina 35:16
Yeah, yeah, I just So honestly, I really feel like my story is brought me to the point now that I'm able to help others avoid what I went through. So I just turn around and try to use it to help others not end up in the same situation that I was being misdiagnosed and really have them push for that. That scene to confirm it. So um, yeah,

Scott Benner 35:39
yeah, well, it's got to try to get back a little bit and right if you can keep somebody from having the same problem you had. So once you find out and you get your pump and all that stuff happening, is there an immediate transformation or does it take you some time to figure it out?

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I'm going to get back to Christina in just a moment. But first I need to tell you about a few things about the podcast here they are in no particular order. Ready. If you're looking for the diabetes Pro Tip series, they begin at Episode 210, your podcast player and they're also available at Juicebox. Podcast calm and diabetes pro tip calm. At those same links. You can find the defining diabetes series, the variable series, the how we eat series, the afterdark series, there's so many to choose from. All of the episodes of the show are available in the audio app of your choice. And at Juicebox Podcast comm you'll find links to the sponsors like Chivo Kibo penne from just a moment ago and touched by type one and the Contour Next One blood glucose meter and the Dexcom and the Omni pod. And pretty soon the endpin. And soon after, that might be something else. You never know. Go check out the website Juicebox Podcast calm. There's an entire series of episodes about algorithm based pumping. Trust me, listen now, because if you want those algorithm pumps, they're here and coming on the pods is out tandems out Medtronic, we're all going to be pumping with the algorithm one day, you should understand what that's all about. Don't you think? Don't you know, in my mind, I'm doing it Wisconsin accent coming out of my mouth. I just sound like an idiot. couple last things. The Facebook page, the private Facebook group Juicebox Podcast type one diabetes, I believe it has about 23,000 members in it. Now it's an absolutely wonderful place to learn more about using insulin, diabetes, and so much more. If you're enjoying the podcast, please share it with a friend. That really is the best way to support the show. If you're listening right now, on your phone, in a podcast app, or any kind of audio player really like Amazon music, let me think Spotify, Apple podcast anywhere. If you're listening to those apps, and you're not following or subscribed, would you please have subscribed for me, please, that'd be nice, subscribe or follow whatever your app supports. I don't know. And if you're listening online, you should get an app for your phone. It's way easier. I'm not telling you what to do. I'm just telling you, it definitely be here. Unless you like your life is specifically set up or you're listening on. Like my website. And if you are, I mean it's cool. Just saying apps are great. You should try them. Alright, let me get you back to Christina. Now there's a lot more to her story.

Christina 39:29
When I got my insulin pump, I'm very much learn everything I can about something new. So my agencies I hadn't done ever better than maybe a 7.5 when I was on injections. And once I got my pump, the highest agency that I had on my insulin pump was 6.2

Scott Benner 39:50
privato and you were injecting was that still were you doing regular an MPH

Christina 39:55
when I got the official type one diagnosis and my agency had gone up into the 80s. That was the point that we determined that 7030 Split just wasn't working goodness anymore, because my insulin production had dropped too low. So that was the point that we went ahead and switch to Basal and long acting. I had an interesting problem, though, that I have side effects pretty much to every single Basal insulin known to mankind. So that is a another reason why we were able to get my insurance to cover a pump, because I just Yeah, I actually for a while there went back to just doing long or just doing came along only and injecting pretty much every

Scott Benner 40:36
two hour like level mirror Lantis.

Christina 40:39
Yeah, tradeo bit just, well, the worst one that was weight gain, I would put on as much as five pounds a week, no change in diet, no change and exercise, the only difference was being on the Basal insulin. But I had significant problems sleeping, like it really messed with my sleep cycle and my ability to get even if I took it in the morning, I still wouldn't be able to get to sleep at night. But I had other really weird ones like hot flashes, low back pain. And I go off of it again for two weeks, and all the side effects would go away. And then we try another one. And I'd have all this, but but really that, wouldn't I switch back to Basal insulin, I gained 30 pounds. And about three months there just from trying to be on a Basal insulin. As long as I'm just on homologue I don't gain weight. But

Scott Benner 41:35
when you move to a pump, and so you're only using homologue did you lose weight, do like magically

Christina 41:41
I didn't lose weight. But my endo did say I was the first person she ever put on a pump that didn't gain weight in the first three months. She's most people suddenly have so much freedom to eat whatever they want on the pump, but they gain weight. But I really was disciplined in my eating already and really didn't see that changing moving to a pump. So she just congratulated me that I didn't gain weight on the pump. She's like, seriously, pretty much every one of my patients gains weight when they first go onto a pump, because they can suddenly eat as much as they want. And so she just thought it was impressive that I didn't gain weight. When I started on the pump

Scott Benner 42:17
during that weight gain time. Do you think do you think that you were taking in more calories than you were prior?

Christina 42:23
Nope. I was doing my same meals. Same carb amounts. Same calories. Yeah, I mean, I was doing everything exactly the same as I had been doing on the 7030 split insulin, and yet I was gaining weight every week. So I've online now met maybe three or four other people that had the exact same experience that seems to be a little rare, but and the fact it was it was with other side effects too. So yeah, I I don't know my eyes. It's my body just really does not seem to like the Basal insolence. And we did try. I mean, there was even some other lesser known ones that she tried me on and crazy. She just went she just went okay, I guess you're just weird here. So, yes, I'm like, don't touch my human log. It works. I don't have side effects on it. And I'm scared to try anything else. After my experience. I'm like, don't mess with me. He will log. It works

Scott Benner 43:23
really? Well. Can I ask you, you said in your in your note when you when you signed up to be on the show? You have Addison's disease as well.

Christina 43:33
So yeah, that's initially what we came on to talk about. So. Yeah. So in on April 18, I actually had been having side effects since July of last year. The first thing that happened? Well, I had a really bad flare up of gastroparesis in July, I actually gotten hospitalized with that. And once that kind of cleared my appetite never came back. Like I just was never hungry. And through that, I started really gaining losing weight. But my thought was, well, of course I'm losing weight. I'm not really eating. And honestly, who's gonna complain about losing weight? I mean, that was just like, Oh, great. I can take some of these extra pounds off again. And when I was working with my GI doctor, we really were just assuming I was losing weight because I wasn't really eating. Honestly, I would go the whole entire day. And unless I had some sort of reminder, I would just completely forget to eat. I had no appetite. The other thing that started is I started getting really, really bad muscle cramps at night. They just I would wake up three, four or five times a night with like charley horse bad cramps in my legs. I did eventually find like some supplements with magnesium and stuff that got them a little bit better. They never completely went away. And I talked to my doctor about it. They're like, well, we can't find anything wrong. So you're just going to have to live with them. So that was the next sign that something just wasn't quite right. But again, they're like, well, we can't find anything wrong. So you're just gonna have to live with it. I do also have fibromyalgia and they're like, Well, maybe it's just a new symptom of your fibromyalgia. And I thought, Well, okay, maybe,

Scott Benner 45:19
Christina, let's back for one second here. Yeah. You said a lot of things. Yeah. By the way, I mean this in a good way, because we're on a podcast, but you're chattier than I am. So I know. So get right. Is the is diabetes, your first diagnosis?

Christina 45:38
Yes, that was my very first years ago.

Scott Benner 45:41
When do we hear gastroparesis?

Christina 45:43
That developed kind of mid my first year, but they also told me that that was because I wasn't getting my agency under control.

Scott Benner 45:52
The bad persists to this day.

Christina 45:55
It does. Most of the time, I can go pretty long without a flare up. Stress really seems to be a flare up for me and I was having some stress at that time. I did We did also figure out there's a medication that I had started last summer that was upsetting my stomach. So that really i i if I'm if I'm control, I can usually control it with diets and keeping good blood sugar under control. I usually need a couple of triggers to go into a flare up of the gastroparesis. But yeah, there just was a perfect storm that happened that week that really flared up bad. And I could I could not keep it down at all. So I ended up having to be admitted because I was not keeping food down at all. So yeah, and then again, we got it back under control, but I just never my appetite never came back. So and then other things I look back now that I didn't necessarily attributed the time. Weird symptoms, like I started startling really easily. Which sounds like a really weird thing. But even if I knew something, someone was coming into the room, they still would startle me when they actually came in. I mean, it just fly woodland next to me and I and it was not just like a quick startle. It was like I felt like my heart stopped, took a couple minutes to recover, kind of startle reflex. And I thought that was really weird. And then the fatigue, I started just getting really, really, really tired. I always felt like I had no energy. But I just kept thinking, Okay, well, I just, I'm a kind of person that if they can't figure out, I'm just gonna keep functioning the best I can. But all of this came to a head in April. I am a regular house sitter. So I was on a house city job. It was a three week long job. And it was a little more involved than usual. It was horses and chickens and, and dogs and everything. And it was for three weeks. And I was really not feeling good during those weeks, which and I just people kept asking me, Are you sick? And I'm like, Well, I don't know, really. I'm just really tired. I'm like, but I'm not. I don't have any other symptoms of being sick. So we get to the last night of the house sitting job, and it was a Sunday. And I even made the really unusual decision not to go to church that morning because I just was like, I am so tired. Oh, the other thing that happened is I started sleeping like 12 hours a night during those last couple months, which was very unusual for me, but I just I could not ever feel rested. I just I would fall asleep at the drop of a hat. And so I got up fed the horses, chickens went back to bed and I slept till like 130 That day, which is so unusual. But I just was really really really tired. And I got up finally because I'm like I've got to get up not because I felt like I was still rested, but was just kind of like Hey, it's 130 I should get up and at least try to be a human today. And I when I ate when I hadn't ate when I got up, it was a low carb maybe like 20 carb meal. I took my insulin and I went low, which I thought was a little bit odd. But I ended up staying low like in the 50s for like two hours. I think by the time it was over, I'd gone through probably 120 130 carbs. I had a friend My friend that's on my Dexcom that just kept texting me going Why aren't you coming back up and I'm like, I don't know. I said I just it's just just been a stubborn low they happen sometimes you know, but I just kept eating and I had planned since it was the last night of my house sitting to celebrate by ordering my favorite dinner from my favorite restaurant which for me is a big treat, I've done it. I've done it at least a dozen times before knew how much my insulin was for it. So kind of, I don't know, after eating all of those carbs while I was still hungry, I still can't figure that out. Because that wasn't typical, but I already had it in my mind, I'm gonna order my favorite dinner tonight to celebrate the last night on this job and making through it. So ordered the meal. And because I'd had the persistent low, I did make the decision not to Pre-Bolus the meal, I thought, you know, because of this afternoon, I am going to just go ahead and eat and then wait to watch for my blood sugar to start going up. And then I'll go ahead and dose for this meal. But it was about an 80 carb meal, so more than I usually eat in a meal.

But around the time I started to see the blood sugar once it hit about 150 I thought okay, I'm going to go ahead and Bolus for my meal, did my normal Bolus and then I went outside to feed the animals because it was about that time that to feed the horses and everything again. So I had my phone out with me, but when out seemed normal first feeding horses when I got the chickens, I suddenly had this feeling something was not right. Like I suddenly felt like I was about to pass out. Like the symptoms of the low came on so fast. I can't even describe one second, I was fine. And the next second, I was like something is not right pulled out my phone looked at my Dexcom I think I appreciate the Dexcom still says something like 90, but it had like two double arrows down. And I went, oh my goodness, something. And my first thought was I don't have my blood glucose meter with me, I don't have any low treats with me, I have nothing. I don't have anything out with me out here. And I'm always from the house, like I'm out with the animals. And so my first thought was, I'd actually ridden my bike down. And I thought, Should I try riding my bike? Back? Should I just try to walk it back? Like my first thought is I need to, or should I just stop and call for help right from here. And as I'm quickly making decisions in my mind, my thought is I've got to get to my meter and see how low I am. Like, I need to know how bad this is. And I need to get to some sugar. So I made the very quick decision to hop on my bike ride back up to the house. I don't know how I managed to do that got up, pulled my meter out. And I was 36. Which I've actually been in the 20s a couple of times and still conscious. So my first logical thought is oh, 36 isn't that bad, I can still get ahead of this, I quickly down a couple, you know, applesauce pouches. And I'm not a gut feeling kind of person. I'm a very logical look at the data and my mind screaming at me, this isn't really that low. This isn't really that bad. But I could not overcome this gut feeling that something was really, really wrong. And I still was struggling to stay conscious. And I'm out here in the middle of nowhere by myself. And I still cannot even tell you why. But I called 911. I just went, something's not right here. Something doesn't feel right. And I just had this overwhelming gut feeling. I need help. So I quickly sent a text to my friend who's like on my Dexcom share with a screenshot of the 36 blood sugar. And I said I'm calling 911. So I don't actually remember all that much about calling 911. I don't really remember I think she quickly responded and said, how were you? I think I quickly screenshotted the address to her to where I was called 911. I remember the you know, the masking for the address. I had it, I remember the mask for my phone number. And by the time they asked for my phone number, I could not get my phone number to come out. Like I can't hear myself that I wasn't saying it right. But I kept trying and I could not get it to come out of my mouth, right? And she finally read it back from the screen. And I said yes, that's it. And then she just said, What's wrong with my blood sugar's low, something's wrong. I don't really remember much past that. I don't remember the paramedics showing up. I don't remember. I mean, I lost consciousness somewhere in there. And so I've heard the story back later, the paramedics got there in a reasonable amount of time. They started with the glucose gel in my mouth. And I think I came up a couple points and then dropped right back down to the low 30s. Apparently, at that point that was around the time that my friend showed up. And she they at first weren't gonna let her in the house. They're like family only. And then she pulled up the Dexcom on her phone and said, Look, I'm her medical person. And they're like, oh, okay, she's like, look, I've got her number right on my screen here. But she also told me later she was not going to let them not let her like she She was coming in whether they wanted to or not, but she came in and the first thing she's like, she was able to tell the paramedics No, this has never happened before, she has never had to call for help before. And they suddenly started taking it a little more seriously, at that point, when she was able to tell them that no, she has never been low like this before. I've lost consciousness. And, but apparently, they started, like, looking around the kitchen, they found a bottle of Powerade that they were able to get me to drink.

You know, and again, I came up, maybe like 510 points, and then dropped right back down again. So at that point, apparently, they tried to find in some cookies that they tried to get maybe I don't know that I cooperated very well. But again, I would come up a little bit. And then I was dropping right back down again. And I was not regaining consciousness. And at that point, they admitted to her they'd never seen anything like this before. And one of the EMTs actually admitted he had never had anyone not respond to the glucose gel in the mouth. So at that point, I guess they called the hospital kind of to say, what else do we do? Like we've never seen this before, where she's not regaining consciousness and her blood sugar was just keep dropping right back down. So they were advised to set up an IV and start dextrose. So from what I heard later, it took the third injection of dextrose. For me to finally start coming back to consciousness. Do

Scott Benner 56:30
you think this was gastroparesis?

Christina 56:33
No. I will actually explain in a moment what this ended up being so. So

Scott Benner 56:39
Christina, you're on a break or anything like that, like, I went off when I make these? You're okay, we're good. We're good. I make these podcasts. And I'll later do a transcript of it. And I think it's gonna say, yeah, you spoke for 90% of the time, because I keep I keep thinking of questions. And then you keep answering that I'm like, I, she needs me. So. Alright, it's okay. Keep going.

Christina 57:03
Um, I'll I remember when I first started coming to me, I immediately started dry heaving. And the first thing I said was, did you give me glucagon? And the guy went, No, but we have pumped you through so much sugar through you that that's probably why you're nauseous. But so they gave me some Zofran. And that kind of stopped me that from the dry heaving, but I just, I was absolutely soaked in sweat. Like, I felt like I had had a bucket of water thrown on me. I just remember feeling really kind of out of it still kind of what's going on? I didn't realize until the next day, I was unconscious for nearly an hour.

Scott Benner 57:46
Wow. Holy crap. Really?

Christina 57:48
Yes. Yes. I didn't realize. I mean, to me, it felt like maybe five minutes. But I mean, at the 45 Minute point, my friend really, she was convinced I was gonna die. She really at that point did not think they were going to bring me back because they were doing everything they do to do and I would not come back to consciousness. And she said, you know, she says, really, by the time they got to 45 minutes, she's like, and I saw on their face, how perplexed they were that they could not get you back to consciousness. So it was decided they did decide to go ahead and transport me. I was in the mindset that I'm like, I don't know, do I need to go to the hospital. I'm conscious now and my friend was assisted they need to try they need to know what happened. They you need to go get checked out to find out why you dropped so low. At the time, I was still on the Medtronic pump that's under a recall. So there was some will maybe your pump malfunction questions going around? So yeah, I went to the ER and honestly, they did all kinds of checking out they couldn't find any real alarms of anything explained this. We checked it from a pump that really didn't seem like it malfunction. The crazy thing, and I actually questioned the ER doctor this week ended up having my pump completely off for over four hours, and my blood sugar hadn't budged above 100. And I even asked the doctor, how is my Basal been off for so long? And I haven't gone up anywhere. I don't know. He's like, so anyway, long story short, they had me do a follow up with my primary care doctor. And as I relayed the story to him, the first thing he said is you were in a cortisol crash. And I went what he's like, I think you have a sense. And he started asking questions he's like that would explain the weight loss that would explain the muscle spasms you're having that would explain this blood sugar crash you had. So essentially, when you have Addison's, your adrenals no longer make the hormone cortisol. Cortisol is really important, especially to type one diabetics because without cortisol your liver doesn't break down your food for sugar and doesn't not release the sugar into your bloodstream. So, the reason I've crashed earlier at lunch I didn't crash is bad because it was only 20 carbs. Whereas this one was 80 carbs. So I took a lot more insulin for the dinner. But essentially, the process that your body needs to break down, your in release sugar into your bloodstream stops when you don't have cortisol. Now of all things they tested at the hospital, they didn't test my cortisol level, which a really good ER doctor should have tested that and saw that my cortisol was probably at zero. And should have clued them in that that was actually the issue that was happening. So until we got all the testing done, and I started on medication that next two weeks, I was only taking about 25% of my normal insulin, both Basal and mealtime, because, yeah, unfortunately, I really pushed them to admit me and get it done. And they wouldn't go for that. So they made me wait to go through all the testing as an outpatient, which took close to two weeks, which I really was frustrated with. But they're like, as long as your blood pressure is not dropping, your stable. So just try not to stress yourself. So that's its particular effect on title and also the treatment for Addison's is steroids. So if your steroid levels are right, it doesn't actually make your blood sugar go up, it just brings it back to what it normally would be without the steroids because of the because of the Addison's because it's basically just replacing the cortisol that you're no longer making. But there is no way at home to test your cortisol level. So it's basically a guessing game. Because your cortisol levels fluctuate throughout the day. And they also fluctuate based on how stressed you are and how active you are. So I tend to, in particular, be a person with the way my job is right now I have days I'm in the office that I'm really active. And I have days at home where I basically sit the whole day. So my cortisol needs are different on those days. And it's still a guessing game, to try to guess how much I need to take based on how active I am that day. So And what's really interesting is now if I have a low blood sugar, I have to stop and ask myself, Is this low blood sugar because of too much insulin? Or is this a low blood sugar? Because I don't have enough cortisol? How do you know?

There's some subtle differences in how they feel. It's a little bit of trial and error. Sometimes it's situational going, Oh, I haven't had a dose of hydrocortisone in four hours. So this is your five hours. So it's probably wearing off, I probably need a little more. I will start getting muscle cramping when my cortisol is going too low. So obviously, if my blood sugar's low, and I'm also getting some muscle cramps, then it's a cortisol issue. I can't really fully put it into words, but they do feel slightly different. And I am off

Scott Benner 1:03:08
the back though, like in a crisis. Is there something you can do?

Christina 1:03:14
I'm on oral steroids. So I take a dose of steroids, and I treat the low. Okay. So I eat some carbs, and I take a dose of cortisol of the steroids that will then bring my cortisol level back up to where it needs to

Scott Benner 1:03:27
be oral steroids are a consistent constant for you every day.

Christina 1:03:32
Yes, I cannot go even one day without steroids. If you don't have enough cortisol, your body shuts down and dies. So without the oral steroids, I can die within a matter of hours. It's also if I were to be in a car accident or something like that I now have to wear ID that says I have Addison's because if they don't give me an immediate dose of steroids, I can quickly die from not because normally a normal person if you're in an accident, you're you suddenly your body will like triple how much cortisol it's making. But since my adrenals can no longer make cortisol, I need to know and what's really interesting, so about a month after diagnosis, I actually broke my ankle. So I got to experience stress dosing, you have to take about twice your normal amount of steroids when you have an injury or illness. Because your body needs more cortisol to help your body heal from the injury. And so I already got to experience the up dosing and the increased steroids needs needed after that, so it just, if you think type one is hard to begin with, when you add something like Addison's in it just becomes that much More complicated to decide, okay? Is this an Addison's issue? Or is this a insulin issue? What's really interesting, so I don't get adrenaline rises anymore. either. I don't get angry, you know, if I'm, if I'm excited about something, my blood sugar doesn't go up anymore because there's not the natural cortisol release that other people would get. So it's really in a lot of ways civilian like, knowing my having to learn my diabetes all over again, too. And honestly, I had somebody else suggest this. They it would be so much easier for life if they would make a cortisol meter for home where we could test our cortisol and because honestly, it's a still a guessing game. You get symptoms. If you have too much. You get symptoms, if you have too little.

Scott Benner 1:05:56
How do you get too much? Do you just scare yourself?

Christina 1:05:59
No, you just have to wait for it to well, you could get up and try to move around more and try to get your body to absorb it more. But most the time, it's just wait, wait it out.

Scott Benner 1:06:11
I've been looking while you're talking. I mean, Addison's is a rare disease, like fewer, fewer than two is fewer than 200,000. Americans have it. That's yeah, that's why you're not getting a meter

Christina 1:06:22
as right. But as type one diabetics, we are 10 times more likely to develop Addison's than the general public.

Scott Benner 1:06:29
Oh, so a fair amount of that 200,000 has type one you're saying?

Christina 1:06:33
So there is actually a group on Facebook of people who have type one and Addison's. And from my experience talking to people, whichever one they got second is the one they most would like to get rid of. So if they had Addison's first and then got type one, they hate the type one more than the other sense. Interesting. If they had the type one first and then got Addison's. They hit the Addison's part because it

Scott Benner 1:06:58
is autoimmune.

Christina 1:07:01
It is yes. It's pretty much on the same autoimmune spectrum as type one and thyroid one because it's the endocrine system.

Scott Benner 1:07:09
I was gonna ask, do you have thyroid disease? Actually, I

Christina 1:07:12
don't. That seems to be one of the few ones few diseases I have quite a few autoimmune issues at this point. I somehow still managed to avoid thyroid.

Scott Benner 1:07:23
What about the anything you can do for that? Um,

Christina 1:07:31
I do have a muscle relaxant medication I can take if it gets really bad, but it also makes you really drowsy. So you can't really function while you're taking it. So I do I actually do take it at night to kind of because I can't otherwise get my muscles to relax enough to sleep at night. Usually. I do take a muscle relaxant at bedtime.

Scott Benner 1:07:49
Does the weed help? Ever try that? Oh,

Christina 1:07:53
you know, I, I actually tried. I tried the CBD oil. I didn't find that that actually did.

Scott Benner 1:08:01
So that might be a marketing scam. But I mean, like, yeah,

Christina 1:08:05
I, I, I want to try to be able to function somewhat. So I don't want to do the actual hard stuff. But yeah, it is. It is what it is. I'm mostly able to function again, stress is a really big trigger that will make it worse. So I do also just try to avoid is I mean, it's not it's not possible to always avoid stress in your life, but I do my best I do. I do water aerobics twice a week. That really does seem to help with the fibromyalgia because it's low impact muscle. Exercise, but yeah, low impact movement. So yeah, but this Addison's has been. And honestly, I still am in the period of time where we're still trying to find the right combination of steroids. That's going to work best. I would say I'm maybe 50% Better than I was at diagnosis, but I still am not back to where I was before all of the symptoms started a year ago. I still tend to sleep more than I used to. Yeah, energies i I am fully addicted to caffeine again, right now. It's kind of

Scott Benner 1:09:21
you get headaches or is there anything?

Christina 1:09:25
Like I'm not necessarily from the from the Addison's, I do tend to still want to err on the side of not having quite enough because for me, the symptoms of having too much is worse. What are those? So yeah, I get all jittery. And I can't sleep. If I've gotten too much before bedtime. It's like not going to sleep pretty much. I mean, I kind of will go in and out of sleep but it's an I'm aware of the time the whole night kind of sleep. And there's really nothing you can do but just try to let it work its way out of your system. So Yeah, it's but I just I just, I can't fully explain it. It's just really annoying having too much in your system. It's just a very jittery, and I just I feel like I can't think straight.

Scott Benner 1:10:13
How about your extended family? Is there any autoimmune stuff going on with those people?

Christina 1:10:18
I do have one sister with some autoimmune issues. It's no, no diabetes, really. I've had a few older relatives to get type two since since my diagnosis, but no type one that we're aware of. There has I've had, I've had grandparents and aunts and uncles with auto immune issues as well. So there does seem to be some precedent for the auto immune. There seems to be a few people in each generation that just seems to get all of it.

Scott Benner 1:10:50
And I and your family like it? My

Unknown Speaker 1:10:52
family line is I look back. Yeah, kid gets the full. Yeah,

Christina 1:10:57
yeah. So like, my grandpa seems to be the one of have in his family. That was the one that got autoimmune stuff. And have my mom, my mom's one of six kids. And a couple of them have seemed to get some of that I mean, stuff. And then there's six kids in my family, too. And two of us have seemed to be the ones that have gotten to more of that.

Scott Benner 1:11:16
Do you have any children?

Christina 1:11:18
I don't. Okay, I don't. A lot of kids that I'm an honorary aunt to, but none of my own. So

Scott Benner 1:11:27
with all this present problems, if you wanted to.

Christina 1:11:35
I still have held out some hope of maybe still having some children, obviously, at 42. I'm starting to run out of time, and I've just really wanted to try to get my health stable, and it just doesn't seem to want to stabilize. So I can't seem to go more than a couple of years without a new diagnosis. So I've kind of accepted at this point, it's probably not going to happen. I still would consider adoption at some point. But yeah, it's, it's more of what I've been able to physically handle the stress of it. And I don't know at this point that I'd want to put my body through.

Scott Benner 1:12:14
Yeah, what my like, yeah, it's just, you're gonna adopt, like a 16 year old 15. Glam for a couple of months, then move them right along to college. I'm fit. And I'm exhausted. So I don't know.

Christina 1:12:28
What's interesting is I would consider taking a type one child two that needed a home. So I read I feel like at this point, and I will have to say, Scott that I only started finally listening to your podcast earlier this year. But what's really funny is I recommended I've recommended to other people for at least the last year, some some reason I got it in incorrectly in my mind that it was mostly an adult parenting type one

Scott Benner 1:12:55
thing, I don't see it as leaning towards either to be honest, right?

Christina 1:12:58
Well, I know that now. But before I listened to it, I really thought it was just for parents of type ones, I can understand that. So but then somebody on Instagram posted the quick start, listen to guide. And I finally went okay, but I still think I thought I was listening. So I could tell other parents of type ones about it. I wasn't starting to listen thinking it had anything to do with me. But then also, I wouldn't really have considered myself struggling. Because I kind of, I got to know my own diabetes really well. And I am more of a logically analytical mind that kind of person. So I was able to see Oh, my Basal used to be just a little bit here, kind of things. And I could look at my graphs and kind of probably understand that a little bit better than some people but I will have to say, my best day when see before the podcast was about 5.8. And since the podcast, it's now been 5.4.

Scott Benner 1:13:59
I like this part of the Congo. When I get accolades.

Christina 1:14:02
I would say the two big things that I learned from the podcasts that I was not doing as I stopped staring at high blood sugar's waiting for hours for them to respond before I did something else. Because that was a rule that I had learned that I just stuck with. And I really upped my game a little bit more on the Pre-Bolus scene. I I kind of sorta would maybe do a five or 10 minute but I had meals I knew I needed the walker pole Pre-Bolus and was just a little too lazy. And I've really kind of upped my game on getting that better of knowing my Pre-Bolus times for my different meals.

Scott Benner 1:14:40
Yeah, that's amazing. I saved your life. Basically. I'm just

Christina 1:14:44
and honestly I do just love hearing the stories

Scott Benner 1:14:46
of others. Something that this morning. I listened to an episode this morning. Now I know that sounds odd to people or not. I've recorded it. I put it through an Edit process. You know, I added ads to it. I uploaded it online. And then I thought I went, there was something I wanted to listen to something this morning. And the other things that I listened to didn't have new content. And I thought, I'm going to listen to Susan, like, there's an episode that just went up with an older woman who has type one and multiple myeloma. And I just remembered it being a really good conversation. And I was like, I'm gonna listen to it as I was listening. I thought this has as much to do with diabetes as it doesn't. It does the to do about life. And, you know, even like, I think your conversations Tell us a little more about attitude and, and perspective. Yeah, things like that, you know?

Christina 1:15:43
Yeah, well, I will have to say some lessons I've learned through this. First of all, if you were even thinking you should call 911. Call 911. I mean, seriously, even as I was calling in the back of my mind, I thought, by the time this show up, the sugar I just ate, it's gonna kick in, I'm gonna be fine. I'm going to be all embarrassed that I called them. But literally, the paramedic told me on the way to the hospital, if I had not called when I did, I would have died. They would not have found me in time. By the time the Dexcom finally caught up, and my friend realized there was a problem. I would have, I would have been probably seizing by that point. And

Scott Benner 1:16:19
they would have been you bouncing above that seizing line. Right? Exactly.

Christina 1:16:23
They were only just keeping me right above 30. Like, they were not getting me to come back up. And I mean, he said later, if they calculated it was someone somewhere close to probably the equivalent of 200 carbs. Yeah, that it took to finally just get me to come up above 40. So

Scott Benner 1:16:42
that's even more, even if you were conscious. That's even more than you would have thought.

Christina 1:16:46
Oh, yeah. Oh, yeah. He's like, he's like, No, but the fact that I was unconscious by the time they got there, like if I had even delayed a few more minutes trying to deal with it myself, I probably would have passed out before I got enough information to the 911. It's funny, that's

Scott Benner 1:17:01
a very common thing. Because a very long time ago, I was having a pendant. My appendix was getting ready to rupture, right. I was home alone with my son. He was a bait like still in diapers. And he's 21. Now. So it's a long time ago. And I remember thinking, I will just go to bed, I'll feel better in the morning. And I thought, well, I'll get him ready for bed. I'll put him to bed. And then I'm going to get in bed. And I Kelly was away. She was in a work trip. And actually, we were supposed to get up in the morning and fly to where she was, which is a longer part of the story not important to this part. So I'm like, I'll be fine. Like, I'll wake up in the morning this, this will be gone. And I take him into his room. And I tried to lift him up to put him on the changing table. And I almost like just dropped it my bear. I basically throw him up there before I lost control them. I collapsed on the floor. I picked the phone up, I call 911. And the pain kind of passes, and I hang up. And so then I get I get myself up and I'm messing with his diaper and the phone rings. And I answered it and the woman's like, this is 911 Did you call 911? And I said I did. But then I decided I didn't need it. And she goes, That's not usually how 911 works. Okay, what's wrong? And I started explaining it to her and she's like, I'm sending an ambulance. Yeah, I was like, I think I'm gonna be okay. And she's like, No. Well, thank you. And I was having emergency surgery like six hours later. So yeah, no,

Christina 1:18:30
I. And so that's one lesson if you even in the back of your mind thinking you'd rather be embarrassed than dead. So if it's even crossing your mind, maybe I should call 911 Call 911 Yeah, Dead people don't Yeah, yeah, yeah. And the second thing that I've learned through this is you can do everything right. You can be the best diabetic there is. And something like this can happen. But if it's still not the time that God decided for you to go, you're not gonna die. I mean, I still cannot explain why I called 911 or what even put that thought in my mind. But I really just come back to it as it was not my time and things worked out. And so not that I ever had a really big fear of lows before but this has given me even a little bit more peace that I'm not going to stress about avoiding every possible disaster. Because all I can do is my best and all I can ask of myself as my best and but I'd have to definitely reminded myself to listen to those gut feelings a little bit more.

Scott Benner 1:19:41
That I'm sorry to cut you off. Sorry. No,

Christina 1:19:44
I basically have been through every diabetics worst nightmare. And I'm still here.

Scott Benner 1:19:50
I all I was gonna say is that I think it's for a person who doesn't have like autoimmune diseases or, you know, especially type one Everybody just feels like I don't know, like, death doesn't seem like a real thing to most people, right? Like, that's yeah, it's the end of your life. It feels like a eternity from now. And so you never live with that feeling of that something bad could happen until you really know that something bad could happen. And then it's almost a little liberating. Yeah, you know what I mean? Like a little bit, like, okay, so whatever, like, I guess anything might happen. And it's like, instead of feeling like, like, there's a magic to it, where, you know, everybody gets I mean, honestly, if you ask any person, when do they think they're gonna die? Everybody's like, oh, probably my, like, 80s or 90s. You know, like, go ahead and look at actuarial tables. That's right, when we all die, you know, like, so. You just get that feeling of it's gonna be okay, I'm gonna be alright. And I don't mean that you have the opposite feeling. I mean, that. I would think you would have some sort of, like I said, just clarity about it. But yeah, yeah.

Christina 1:21:05
Yeah, I mean, I've definitely had my days where I've gone. Oh, my goodness, I'm so tired of dealing with this. Why didn't I just die that night and be done with this? I mean, I can't. I have to admit that's crossed my mind a couple times. And I go, but no, honestly, I'm still here for a reason. And I still got purpose here. And honestly, statistics say that there's a very good chance there's at least one person that's listening to this that's develop the symptoms of Addison's and hadn't hasn't even been diagnosed yet, because, honestly, most people stories that I've heard, they have almost died before finally getting diagnosed. It's one of those rare diseases that doctors just aren't good at looking for. And people, it's not the first thing that's going to come to their mind. So I just tell people, if you think there's even a chance you can have this. The standard test that they start with is a morning cortisol test. But I actually also know from experience my own experience, you, you can actually continue to pass the morning cortisol test, and not have enough cortisol through the end of the rest of the day. So I've told people if it comes back normal and you still are suspicious of a cortisol issue, ask for a 24 hour cortisol collection test

Scott Benner 1:22:16
was anything we have to pay anything like all day? Yes, it is. Yeah, it

Christina 1:22:19
is. But that is really the best way to determine if you're making enough cortisol because it's slowly dies out. I actually can point back to a surgery I had three years ago, where my blood pressure kept crashing after surgery. And I actually think in hindsight that I was already starting to struggle with making a court was all back then interesting. Because I can point back to situations of stress like that, where I was having weird symptoms. That I think now we're actually because in those times of stress, I wasn't able to make enough even if I was had enough for most days. Yeah, Harris was already it was already on decline. But yeah, it's been since July of I mean, I lost 50 pounds between July of last year in April,

Scott Benner 1:23:04
Jesus. That's a lot.

Christina 1:23:07
I mean, there was, and yet the doctors kept saying, we're not we can't find anything wrong. So

Scott Benner 1:23:13
are you losing weight like that? And you're not trying you got to be like, Nah, something's wrong. Right? Did you think you had cancer? Well, they

Christina 1:23:19
kept saying, Well, what are you eating? I'm like, Well, yeah, I kind of not really eating.

Scott Benner 1:23:23
I don't eat much. Oh, okay. I would have thought I had cancer. Just so you know, I would have been like, that's definitely what's happening.

Christina 1:23:29
My GI doctor kept trying to find ways to get me to talk, you know, to eat more, thinking that that's why I was continuing to lose weight. But seriously, I had days where I had maybe a salad and that's all I had the whole day. Yeah, I mean, I would do maybe a protein shake here and there. But I mean, I just I was not hungry. And honestly, I loved that I was losing weight without trying. So lack

Scott Benner 1:23:53
of hunger is a to do with the Addison's. Yes. When you don't

Christina 1:23:57
have cortisol to break down your food for energy, the natural response of your body is to just not be hungry, because it's not doing anything with the food. But that's also why you get so incredibly fatigued and start sleeping so much because you're not getting any energy from your food or because even when you eat, I don't know exactly where the food is going when it's not being broken down. I don't completely understand that process.

Scott Benner 1:24:22
Were you able to force yourself to eat when you weren't hungry?

Christina 1:24:26
To a certain point? Yeah, I mean, there was times. Yeah, I mean, I occasionally would still stop and get my favorite meal, which was encouragement to eat but even when I ate I still was losing weight. So I just Yeah, but I just food had no appeal to me. I just, I wasn't in the mood to every anything like usually when you're hungry, you like have something you are thinking about. Oh, I didn't do eating that. There just wasn't ever that feeling of, Oh, I could really go for it. Good, you know burger right now, or, Hey, I'd love a piece of chocolate right? There just wasn't ever any of those thoughts or feelings about your food had no interest to me. So

Scott Benner 1:25:10
any specific food over another or no? Like was Nope. Nothing like

Christina 1:25:14
no, just just no interest in eating. Yeah, I can't really explain it other than food had no appeal. And so I just And honestly, half the time, it's just I didn't even think about eating. I'd get to nighttime and go, Oh, my goodness, I haven't even eaten all day. And it just because I wasn't hungry. I didn't ever think about it. And yeah, it just it was weird. And in hindsight, it makes so sense. I really should have been paying closer attention thinking, Okay, this is not normal. And pushing a little bit harder to Yeah. Okay, figure this out something. But yeah, I don't know, I, I deal with a lot of health stuff. And in a lot of ways, I'm used to just pushing through no matter how I feel. And I just kind of gotten that mindset again.

Scott Benner 1:26:07
It's hard to look, it's it's hard to even want to look deeper. Sometimes like you're like, Oh, God, there's

Christina 1:26:12
exactly, it's like, well, and here's other interesting things that I've realized now. So the Starlene that's because your stress response is not working properly. So your over your over, your body can't properly respond to stimuli, because without the cortisol, which is why I was struggling so bad, but there was other random things like my fingernails were breaking all the time, which I thought was kind of odd. But that ended up being a cortisol issue. I mean, there's just was really random things that I figured out after I got on the medication going, Oh, is that why that was happening?

Scott Benner 1:26:44
I want to thank you for sharing this with me. Because if any of this stuff ever happens to people I know, I'm gonna know immediately from all of your stories. So yeah, I'm gonna I'm gonna turn into the auto immune Dr. House if I keep doing this much long. Well, you're, you're startling. Oddly, I know what that is.

Christina 1:27:03
But the really classic ones are the loss of appetite, the weight loss, and the tiredness. I mean, the fatigue was at levels I have never experienced before. And I had people that would just look at me go and you know, look at it. And I'm like, Yeah, I am really tired. And I mean, I just I just was dragging through life, and it was noticeable to other people. And so those are considered the classic symptoms of Addison's.

Scott Benner 1:27:36
And I appreciate I really want to thank you so much for doing this and for reaching out, and it's definitely not a topic that a lot of people have have spoken to me about. So I'm really happy to add this to the podcast. I appreciate it very much.

Christina 1:27:49
Yeah, well, I'm just I want people to be able to learn from what I've been through if I can get anyone to avoid almost dying like I did. That that's a win and honestly, it's, it's there's there's many people that think that there are people that have died from Addison's without ever knowing they died from Madison's because it's not something they necessarily test for post mortem, either. Oh, I see. So, yeah, I mean, there's they assume there's actually probably diabetics that have died from a low low blood sugar that probably had something extra going on like this and didn't know it. I mean, if I had died that night, I don't think anyone ever would have known. Yeah, that would have I don't think they would have just assumed I died from a low blood sugar. I don't think anyone ever would have realized that I have out of sight out Addison's so. Yeah.

Scott Benner 1:28:42
Yeah, that that's a an interesting way to end because I it didn't occur to me either. That

Christina 1:28:48
yeah, no, I realized if I had died that night, they would have just put it down that I died from a little bro trigger, they wouldn't have ever gone and looked into anything else. Yeah,

Scott Benner 1:28:55
that makes sense. Okay. I, again, I really appreciate you doing this. I want to thank you very much.

Christina 1:29:01
I appreciate you having me. I I really just want people to be aware and especially type ones. They do say if you read online that the average age for Addison's diagnosis is between 30 and 50. But there are parents in our group on Facebook who have children who have both type one and Addison's. So it really can happen at any age.

Scott Benner 1:29:21
What's that Facebook group called?

Unknown Speaker 1:29:24
A

Christina 1:29:26
I think it's pretty simple, but I can it's pretty stupid name for I think it's a pretty simple stupid name of Yeah, it's type type one diabetes, type one diabetes, and Addison's disease is the name of the group. So yeah, it's pretty easy to find.

Scott Benner 1:29:45
Okay. I just want to I want to just say here so that

Christina 1:29:49
Yeah, yeah. And I do talk pretty regularly on my Instagram about living with Addison's and type one. So

Scott Benner 1:29:57
what's your what's your Instagram? Hey,

Christina 1:30:01
Korea CRI A underscore t Wendy night. So yeah, I also bring awareness there of what it's like living with Hypponen. Edison's I appreciate it. So cool. But yes, I really appreciate the podcast and I share it with others as much as I can of how much I've even learned since listening to it and going you're right, why am I still following these rules? I know myself better than Well, now, why am I why am I staring at this high blood sugar? I know after an hour if it hasn't budged. It's

Scott Benner 1:30:32
not going to. Now that you know that the podcast is for everybody. It's easy to is it easier to share it now? Do you ever get to share it with adults?

Christina 1:30:41
I do. But I haven't been able to convince anyone to listen yet. So maybe when when I tell them to come listen to mine, maybe last year this realize they need to start listening to the other show.

Scott Benner 1:30:50
Well, if they're here, now you listen to Christina she she's talking about.

Christina 1:30:55
So yeah, I'm like, I really wish that I had this a diagnosis, I would have been so much better off

Scott Benner 1:31:01
of so right. Christina, a guy that doesn't have diabetes is gonna talk to you about diabetes. Well, exactly.

Christina 1:31:07
Exactly. And some of the, some of your concepts do sound really radical, like, do they really, but honestly, they Well, compared to what the doctors are saying to do. Yeah, I mean, they sound dangerous, almost to someone who doesn't know better. But again, you know, your own diabetes better than your doctor does. Right? Yeah. And yeah, so

Scott Benner 1:31:27
I completely understand when people would type one, especially adults who have had it for a long time wouldn't be interested in listening to the podcast, like I guess, I there's enough people listening now that I know that a lot of you would like it. So you should hang around, which

Christina 1:31:42
again, as you said, I wouldn't have considered myself struggling. I mean, I had good a wind seeds. And I felt like I knew what I was doing. So I didn't necessarily feel a great need to go learn more. But I did learn more. And I do really enjoy hearing the stories of other people sharing.

Scott Benner 1:32:00
I share that. So if anybody's here just to listen to Christina, you should go check out what do you think the pro tip episodes or just listen to some other stories or something like that?

Christina 1:32:08
I would say message me. And I'll actually I will say when this goes up all for a few days on Instagram posts, the ones that I would say to go start

Scott Benner 1:32:16
listening to Oh, could you thank you very much.

Christina 1:32:19
I appreciate it. Follow me on Instagram and I will make sure that I share. Here's my favorite one.

Scott Benner 1:32:23
Christina, you sly little social media pimp liquid. I'm not gonna give it all away here, Scott. They got to come find me.

Christina 1:32:32
I don't have a ready list in front of me. And I'm going to feel like a bit of forget one. And I'm a perfectionist. So I want to make sure that I have a ready list.

Scott Benner 1:32:41
I gotta go. I have to go get my eyebrows waxed. She's getting hurt. Or not. Well, she does threading. Oh, my god. I can't believe I said waxing. She does threading and she's getting her senior portraits done tomorrow. So I am in charge of taking her to that right now. But thank you very much for doing this with me.

Christina 1:32:57
Oh, you're welcome. Thank you for having me.

Scott Benner 1:33:08
A huge thank you to one of today's sponsors. G voc glucagon. Find out more about Chivo Kibo pen at G folk glucagon.com Ford slash juice box. You spell that? GVOKEGL you see ag o n.com. Forward slash juicebox. It's been a long episode. I'm not gonna hit you with too much here at the end. Just all the rest. Find the Facebook page. Take the T one D exchange survey support the sponsors. Share the podcast with a friend. If you're listening in a podcast app, please subscribe and follow. And if you're not listening to an app, come on. It's 2020 to get yourself an audio app. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

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