Rebel Health Collective

Lucie’s Health Journey: GLP-1s, POTS, Raynaud’s, Type 1 Diabetes and Advocacy

• Josh Bostick • Episode 3

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On this insightful episode of the Rebel Health Collective podcast, host Josh reconnects with his friend Lucie, the inspiring host of "The Fast Life with Diabetes- Intermittent Fasting" podcast, to discuss their shared experiences in managing type 1 diabetes and exploring unconventional approaches to health. Lucie shares her journey with diabetes, from the early days of testing blood sugar levels to the advanced technology and innovative methods she's using today, including fasting protocols and DIY insulin algorithms like IAPS.

Lucie also dives into her experience with GLP-1s such as Ozembpic and Munjaro, discussing how these treatments have impacted her insulin resistance, weight management, and overall diabetes care. She shares valuable insights on the benefits and challenges of these medications, offering advice for others considering similar treatments.

The conversation covers the challenges of living with multiple autoimmune conditions, including her recent diagnosis of POTS (Postural Orthostatic Tachycardia Syndrome), and the importance of self-advocacy in navigating the healthcare system. Lucie also touches on some of her other conditions such as sleep apnea, Raynaud's Disease, Carpal Tunnel Syndrome, and Dupuytren's Contracture. Josh and Lucie also explore the mental health aspects of chronic illness, the need for community support, and the power of taking control of one's health journey.

Josh shares his experiences managing stiff person syndrome through diet, supplements, and functional medicine, emphasizing the significance of owning your health and collaborating with healthcare professionals. Together, they explore the importance of being informed, proactive, and open to trying new methods to achieve better health outcomes.

Whether you're living with a chronic condition, a healthcare professional, or someone interested in alternative approaches to health, this episode offers valuable insights and inspiration for taking charge of your well-being.

Key Topics:

  • The impact of fasting on diabetes management
  • Navigating the complexities of type 1 diabetes with advanced technology
  • Lucie's experience with GLP-1s (Ozempic and Mounjaro)
  • Lucie's journey with POTS and multiple autoimmune conditions
  • The importance of self-advocacy in healthcare
  • Managing stiff person syndrome through diet and supplements
  • The mental health aspects of chronic illness and the value of community support

Listen now to learn how to take control of your health journey and explore new ways of thinking and acting on your well-being.


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**Disclaimer: Please remember that the topics and information discussed in this podcast are for informational and educational purposes only and should not be considered medical advice. Always consult with your healthcare provider or medical professional before making any changes to your health regimen or implementing any new treatments. Your health journey is unique, and it’s important to work with your trusted healthcare team to determine what’s best for you.**

Josh:

All right, hey, lucy, how's it going?

Lucie:

Good, I'm so glad to see you, josh. It's been such a long time and I'm so proud of everything you've done.

Josh:

Right back at you. Definitely great to see a familiar face, but the tables have turned on this one. I've got you as a guest today and I'd like to go ahead and give a little bit of an introduction of my history with you, and then I can turn it over to you and you can add any details that I miss about what you do in your efforts, and then your history and all that. That sounds good, sure, all right, perfect. For many of you that have listened to the first one or two episodes, you have known that I've gone a little outside the normal medical bounds and I would like to credit Lucy for really kickstarting all of that.

Josh:

I still remember it being like 4 30 in the morning, walking on a treadmill because I had high blood sugars and my alarms had been going off all night and I just was going through Spotify thinking there's going to be a podcast or something about diabetes, and then I stumbled upon the Fast Life, which is a fasting-based podcast for type 1 and type 2 diabetics, and Lucy is the host of that, and really it's just all these episodes of people taking their health into their own control, trying things, and just so many success stories and people losing weight, reversing their type 2 diabetes, getting super good management of their type 1 diabetes and it's realized people telling their story and what's worked for them. And none of it was what I had heard in any of my doctor's appointments, either from my endo or my primary care. So I gave it a shot and I credit that podcast and the fasting protocol to really turning around my journey with type one. I think I'm in a totally different place just by stumbling upon that. So I give all credit to you for all of the roveness that has gone on.

Josh:

I think my medical journey now, from finding your podcast and really just understanding that what you hear inside the four walls of a doctor's office isn't the end, all be all. There's communities and people and methods and all these different avenues that you can explore to try to help yourself. I wanted to kick off and just say thank you again for your friendship and guidance over what the last two years about now.

Lucie:

Yeah, yeah, thank you so much. That means so much to me and I appreciate that. And, yeah, I continue to go rogue and do my own thing with fasting, and we can talk about some of the other ways I'm managing my diabetes now, which is not the standard treatment really I have. I have crossed over into a few other things, which it's all trial and error, and I've heard you talk about your stiff man syndrome and how you're going rogue on that too, and you're the person that is most interested in your health, so you're the one that has to take control over it and you need to try new things and just do what works for you.

Josh:

Totally agree. I'd love to hear I know, a lot about your back history, but for those who haven't listened to your podcast before, I'd love to hear how long you've been a type one, some of the things that you've gone through. I know technology has advanced a ton since your diagnosis maybe some of the hardships of when you first were diagnosed and controlling the disease at that point and what you're doing now and anything else that you'd like to share disease at that point and what you're doing now and anything else that you'd like to share.

Lucie:

Sure, yeah, so I've had. I'm about to be 44. So I've had diabetes for 20, almost 27 years now and type one, and back then it was. I got it when I was a freshman in college and back then it was really just injections. You had to test your blood sugar like four times a day, if that, and it was a lot of waking up in the middle of the night. I remember just it was almost every single night wake up with just these terrible low blood sugars. You're sweating, you need everything in the kitchen. Then you wake up and your blood sugar is like 500 because you ate way too much and you just wanted to get back to sleep. So it was just years of extreme lows overnight, extreme lows during the day. I used to be really into running and swimming and I played rugby. I was super athletic, so, if you can imagine, I would. I always used to.

Lucie:

The common wisdom was like get your blood sugar up to 200, eat a banana before you go and work out. So I, my blood sugar would be 200, 250. And I was like, okay, good, Now I can go work out. So then I'd be super elevated the whole time I was working out. Then I would just assume that I didn't need any more insulin on the back of that because I was like, well, it'll come down. That's all total misinformation. So generally I was running super high during the day with some. Sometimes I'd check it and it'd be like 300 and I would get annoyed and I'd give myself too much insulin. Then I'd go really low. It was just a roller coaster, literally 24-7. And you know, when you're only checking your blood sugar three, four times a day.

Lucie:

I used to do it on feel. I was like it was really hard for me to acclimate to a continuous glucose monitor. I could actually tell with pretty good accuracy. I feel like I'm 250 right now and it'd be like 260. It was pretty, pretty close. Or I feel like I'm 50 right now and I was pretty close. In a weird way, even though we didn't have the technology, you kind of feel where you were. Now I never really felt normal. I always was too high or too low. But then when the CGMs came out and the pumps, that's when everything changed. I guess that was like around 2000,. Maybe 2010 that I really started getting on Dexcom. I think was more like 2013 or 2014. I think I've been doing Dexcom for 10 years, but I've had a pump since 2009, 2010, and I've gone through all different types of pumps, all different iterations. I've done recently I looped and then I switched. You're MDI right.

Josh:

No, I'm on the T-Slim.

Lucie:

You're on the T. Oh, that's right, You're on the T-Slim.

Josh:

I forgot.

Lucie:

Yeah, so I know a lot of people. They switch between all different methods, but I was. I had an Animus pump which is no longer in business, Then I went to Medtronic, Then I went to Omnipod and then I did looping for a long time and then now I'm on the system called IAPS, which I don't know if you've heard anything about that one. Yeah.

Josh:

Yeah.

Lucie:

So I like that. I've had similar results with loop and IAPS. Iaps has a lot of settings and it's basically an algorithm. It's a DIY algorithm. Loop is a little bit more user-friendly, I would say.

Lucie:

If somebody is listening to this and they're trying to decide between loop and IAPS, I always tell people start looping first, understand how that works and then do IAPS, just because IAPS has so many more settings and it's very complicated and I don't fully understand it. And you change one thing and it'll blow up the whole rest of your algorithm and it's difficult Like I've watched a bunch of the loop and learn videos on IPS and I still don't fully understand it. Um, but I do feel like it takes highs down a little bit more gently and it I don't go low as much with IPS. I used to go low a lot with loop, so I prefer IPS at the moment, but I may switch back. That's the other thing with my diabetes management.

Lucie:

I'm not married to anything. As soon as something's not working, I just switch. I don't sit around and try to make it work. I abandon it real fast and move on to the next thing. Scratch, yeah. And so I'm still doing fasting. I usually fast between 19 and 22 hours a day, I would say. The interesting thing with my fasting, though, is and I talked about this a little bit on my podcast I need to do an update, just because things have really changed in terms of other medications I take. I had taken Ozempic before, and Ozempic and all these GLP-1s are really great for insulin resistance, which I have because I'm about to be 44 years old and I'm going through perimenopause and my body just is not working the same way that it used to. So I had a ton of insulin resistance. I had a lot of weight gain just lots going on. That wasn't quite working for me, so I got on Ozempic, had pretty bad side effects on Ozempic, and so I took.

Lucie:

Yeah, it was just. You know there are different formulation Ozempic is semaglutide and then Munjara, which is the one I'm on now, is terzepatide. It was not easy on my gastrointestinal system, it was not pretty and it was even at the very lowest dosages. I just couldn't tolerate it. So if people are having trouble on Ozempic I would recommend trying to go over to Munjaro. Munjaro is a lot gentler I haven't had.

Lucie:

I've been able to titrate up very easily and not have any side effects and it definitely helps you with your insulin resistance. My insulin needs have gone way down. I used to take 40 units a day previously before doing intermittent fasting. Then I went down to 1920 a day after starting that and now I'm back up to 30, 40 units a day, just because my body's changed, my weight's similar, but it's just meant perimenopause. So anyway, the Munjaro has brought that back down again, not quite to the 20. I'm like 25, 30 units a day which I'll take. It helps with satiety, like I. I think I don't know if you have this experience yourself as a diabetic, but I just feel very hungry all the time. I can definitely do long fast, but a lot of it is even if I'm clean fasting. It's hard. Do you feel that way?

Josh:

fast, but a lot of it is even if I'm clean. Fasting it's hard. Do you feel that way? Yes, I could always eat at any point. If you put something in front of me, any point of the day I would happily indulge, and especially like when I am fasting and I have to correct, when I have a couple of raisins or something like that, it's just like the flood gates open and I am starving. So yeah, I totally understand the society type side of it.

Lucie:

So yeah, absolutely, it's a real struggle and you're right, that's the hardest part is when you have to treat a low and then you have to stop. Stop treating that low and you're just like, oh, I can't do it. Anyway, the moon jar, I really. It helps me fast a little longer. I don't obsess about food all day, which is really nice, and then it's interesting because I don't know if you identify with this, but maybe some other people do I'm a shoveler. Like when I eat I will shovel it all in. Like I can eat a tremendous amount of food in a very short period of time and Munjara slows me down.

Josh:

Oh, really Okay. So just the curbs the appetite even when you are eating. Okay.

Lucie:

Yeah, obviously, when you do it that way, your stomach doesn't send the signal to your brain that it's full, so it's. You end up eating more than you should. Munjara kind of just slows you down. It's weird. I'll eat something to open my eating window Maybe I'll have a protein bar or something like that and then I'll just stop for a couple hours because I'm like not hungry anymore, or I'll eat whatever my main course is. I still say that I do OMAD, but it's really stretched out now. I used to do OMAD and eat in a one hour window and be done for the day. Now I eat over five or six hours because I literally just I can't shovel anymore. I lost that ability, which is incredible when you think about it, and it's better for your blood sugar because you have major spikes when you put in that much food at one time.

Josh:

Yeah, even if it's a steak or hamburger meat or something like that, it doesn't have to be sugar. Even if you just throw down a bunch of protein, you're still going to get a good spike from it and it'll be a long drawn out one, not so much just like sugar, but yeah, it's definitely better to space it out and eat over time. And on the manjarro, do you forget to eat? Is it ever seven o'clock at night, like, oh, I haven't eaten all day Cause? I've heard some people say that unless they're planning out their meal, they could go a day and totally forget to eat. Do you have that?

Lucie:

In the beginning I did, but that didn't last long. That was like maybe a period of two weeks where I was like, oh my God, I was like forcing myself to eat. Nothing sounded good when I would eat. I was like I got to eat the most high fat, high protein thing I can find, Cause I'm just not going to, I'm not going to be able to get enough calories in for the day. I would eat one cherry, I would eat one little tiny piece of a chicken breast and I'd be like I'm too full, I can't go on anymore, and I wish I had that feeling back. It was nice, but now it's. I can eat as much as I want. It takes me a little longer to get there and then once you slow down, you don't tend to overeat as much down.

Josh:

You don't tend to overeat as much. You gotcha, yeah, and it wasn't a sense of you were full or more, so just not really an appetite, if that makes sense.

Lucie:

Yeah, no, I just didn't have an appetite, I just nothing sounded good. It was a very strange feeling and I was like, oh, I wonder if this is how people that are naturally thin and don't have diabetes. I'm like I wonder if this is like how they feel Interesting? Yeah, probably.

Josh:

Definitely is a good feeling has.

Lucie:

Yeah, but yeah, the best side, the best effect of Moonjaro is just that it really helps you with insulin resistance. Like my insulin needs have gone way down and I think it's truly a function of maybe I'm eating a little less and I'm eating more of an extended over an extended period versus in a one hour shot I would say. My eating window went from one hour to, yeah, like five or six hours.

Josh:

Now I can't, I can't do it as fast anymore, yeah just had to extend because you couldn't get the calories needed in that window anymore.

Lucie:

Yeah, and a lot of days I do two meals a day and I don't really I feel like the moon jar also helps with inflammation. I don't know if there's studies on this, but I think a lot of my body was just inflamed. That's where a lot of my weight came from. So I actually feel like I can oddly eat a little bit more now and not gain weight and not need more insulin. It's very weird. I definitely recommend it. It's worth a try if you have type 1.

Josh:

There's a lot of research and studies going on. They're saying that it can help with addiction and I think weight loss was the original intent of it and now there's a ton of different side effects for the good that are coming out of it. So it'll be interesting over the next couple of years with the progress of the drug and as we get more data on the people that have taken it, because it is still a relatively new drug that's available to the public. So I'm definitely interested. It's something that I keep my eye on for sure.

Lucie:

Yeah, and the other cool thing about it is it lasts seven days, but I feel like you can go about 10 days, so it actually stays in your system a pretty long time. I can still see the effect of the insulin sensitivities even after 10 days versus the seven, so it's a good drug it really is. I find it to be much easier to deal with than Ozempic, but everybody has their own experience.

Josh:

Yeah, you're on that now. Is there any other issues or autoimmune stuff that you've been dealing with lately?

Lucie:

Yes, very recently and I'm talking within the last couple of weeks I was diagnosed with POTS, which is postural orthostatic tachycardia syndrome. A lot of type 1s have it. The kind I have is not necessarily correlated with type one, but if you have type one you may want to get checked for it, because it's one of those things where it's sneaky and you may think you have a thousand other things, but it's really POTS. So, basically what POTS is, anytime you go from a laying down position or a seated position and you stand up, if you check your heart rate you'll go from 60, a rested position to 120, for example, within one second. So your heart rate just increases really fast and it's. The problem is the blood can't get from your lower level up to your head and your brain and it just doing this all day long when you're changing positions and it makes you extremely tired. If you can imagine your heart is just working overtime.

Lucie:

I was for the last like over a year, I would say trying to chase down what was wrong with me and I found out I have sleep apnea. So I thought, okay, maybe it's just sleep apnea. I have a mild or moderate case of sleep apnea, so did the whole thing where I got tested for that and I got a CPAP machine. I sleep with the CPAP machine, you know. I wake up and I'm still tired and I'm like why am I still tired? And then like maybe it's perimenopause, because perimenopause makes you tired. Okay, so maybe it's that. And then I check and my hormone levels are basically normal. So I'm like maybe it's not that, I don't know, maybe it's the impact of just having diabetes for as many years as I've had it, who knows?

Lucie:

And then I heard this podcast, first of all Ginger Vieira, who came on my podcast. She has POTS and I really should have her back on and talk about that specifically. So I heard the name like I was aware of it. And then I heard another podcast with Christina Applegate and Jamie Lynn Siegler, and they both have MS. It's called MSI, which, if you were somebody and I feel like you might resonate with it too, since you have the stiff person syndrome, which I want to talk to you more about that too. They both have MS, so they have a lot of issues moving their body and they just it's hard with these invisible diseases. It's a very personal battle, as I know, but anyway, christina Applegate's daughter came on and she has POTS and she was describing what she was going through and how it's so much worse in the heat and how she's constantly tired all the time.

Lucie:

And I was like, oh my God, I wonder if I have POTS. And so I went to my neurologist and I was like I think I have it and he gave me this test that you can do at home. I did it three times and I gave. I went back and I showed him the results. He's like oh, you have POTS. And he's like now we have to figure out why. Because it could be you have a heart arrhythmia. It could be a vascular issue, it could be neuropathy causing it. This week I did the vascular test. Next week I'm doing the test with the cardiologist. So we're trying to chase down what the cause is and then we can figure out how to treat it. It's not. I think it's very similar to stiff person syndrome, where it's not really that easy to treat. So it's you can take salt pills. There's some other things that they can potentially give you, but they're not. It's not a cure like it's really hard treat.

Josh:

He's you can wear insulin or something like that. No, it's not a just a drug you can take.

Lucie:

Yeah, so he's like you should be wearing compression garments all the time, socks that compress, and I want you to be wearing like a binder around your waist all the time. I'm like I'm not going to do that, are you kidding me? Like it's just first of all, it's the summer. I'm not going to do that in the summer, but just in general. Have to do that like for the rest of my life. I don't want to do that. Like I have to figure out another way to solve this problem. So, anyway, I'm at the very beginning stages of that.

Josh:

I wish you luck on that. I know how that can go, where some of the recommended treatment plans are just like that's not it. There's got to be another way. We'll definitely keep in touch on that. I'm excited to hear what you uncover and what you end up ultimately using to treat it and how that goes. So we'll definitely keep in touch on that.

Lucie:

And you? I'm curious to know more about your stiff person syndrome, because you like there was, no, you weren't responding to regular standard treatments, and so you had to go to the functional medicine doctor to get to figure out what was diet and some supplements that you needed to take.

Josh:

I didn't go into a whole lot of detail on that on the first episode, so we can talk a little bit more about it. But yeah, essentially I'd had just this rigidity and super stiffness in my trunk, like around my hips and the back of my back and then my shoulders and midsection. I just felt like a board. When I woke up I was just so stiff and I started having some spasms in my my chest and my bicep on my left side. And I had done some blood work and one of the things we checked for was the GAD 65 antibody test and the value went up to 250. I don't know what my actual score was, because the test we didn't get that detailed, but it was well beyond that 250 score marker. I'd done some research and had been seeing a PCP at the time and brought that up with them and they were like we have seen one other person with similar results and they did ultimately end up getting an official diagnosis for stiff person syndrome and they basically said muscle relaxers are one of the key things you can do for treatment and I just that there's gotta be another way. That's not what I'm going to do for the next hopefully, 60 years of my life I'm not going to be a muscle relaxers, and so the thing with stiff person syndrome is that it's really hard to get an actual diagnosis. And that's what I've found in this community is there's this specific list of different symptoms that you have and people are checking that box and they're going to the doctors with these videos of their entire limbs and body just spasming and like they get out of a car and it literally looks like a piece of firewood getting out of a car. This the people are so stiff and unable to move and they're like walk on their tiptoes because they it's so rigid that they can't have the flexibility in their ankles to take normal steps, and it's almost. Some of the medical professionals don't want to give the diagnosis because they don't know how to treat it, and so it's really hard to ultimately get the diagnosis. And so I had been referred to a neurologist here in the DFW area in Texas, never ended up getting in with them. I actually called two other specialists in the area and never I told them my symptoms and never got a call back to come in or anything. I don't have an official diagnosis other than my PCP saying that the symptoms I have are aligned with one of the other patients that they see that did get a diagnosis. I essentially gave up on going to see a specialist at that point Cause, as you mentioned, I did start seeing a functional medicine team who basically were saying we can't give you that diagnosis but we can help you treat it and that's what we've been doing.

Josh:

I mentioned in that first episode that we did an elimination diet and all of the inflammation that I had in my gut and my body and the muscle spasms and back aching, that's all. I wouldn't say it's gone completely, but it's gone from a 10 being just almost unbearable to. I'd say I'm at like a two or three. Now there's a couple days where it'll flare up. I've got a neck flare up going on these last two weeks that I've been dealing with. But if I could continue on like this for the rest of my life I'd be totally fine.

Josh:

So it's just been some supplementation. I went and did some really in-depth blood work and had a lot of nutritional deficiencies that we've been working on some nutrient deficiencies, magnesium, really low on vitamin D. So we've been supplementing those and they've had me on a plan and it's just been getting better and better Don't know if it is 100% sip first and syndrome or not was because I could never get a full answer. And if I did get in, who knows if a diagnosis would have ever actually happened, but the symptoms that were aligning with it pretty much gone away at this point.

Lucie:

That's incredible. Assuming you do have Stiff-Pherson syndrome, does it ever go away or is it a lifelong condition?

Josh:

No, it actually usually gets worse. So the people that I've talked to and reached out to like the spasms I was having in my shoulder or my bicep and chest. It starts like that and it just progressively keeps getting worse.

Lucie:

Wow, I'm glad you're able to, at this point in time, manage it with diet and supplements and things like that.

Josh:

Yeah, definitely.

Lucie:

I hope it continues for you that way.

Josh:

Yeah, and it's taught me so much about the food that I was eating and not eating. And when you have really started trying to eat more whole foods, cooking at home, digging with just meat, vegetables and fruits, not so much the processed stuff. We really try to. If you have to open up a bag or something to get into it, we try to have that in our pantry at that point and I think that alone has just helped a ton.

Lucie:

Yeah, no, that's really great. I'm really curious about because you haven't had type 1 that long did you just feel like I'm curious if you felt like that was just a real gut punch to have this happen too, or were you better prepared because you already had a devastating medical diagnosis not long before?

Josh:

Yeah, with the type 1, a lot of what I'd looked into is what else can come with this. What do I need to be on the lookout for? Because I'd missed the symptoms of type 1. And those are. If you know them, they're pretty obvious, but if you don't know them, you can totally miss them. So I wanted to make sure that, going forward, I knew at least the common things that can can come along with type one down the road and I knew there was baggage to come. Thyroid issues are a big thing. I've heard of POTS before but I didn't know much about it. But I've seen people posting that type one with POTS and it seemed like a something that a lot of people do end up having that have type one. So I was expecting that things would be happening down the road, didn't expect this one, but it was like the type one where you just have to okay, this is what it is. I can either deal with it or it's going to get really ugly.

Lucie:

Yeah, when I went to my neurologist and I showed him all the papers from the tests I did at home for POTS, he just looked at me and he's like I'm so sorry that you have POTS. It's really hard to deal with. And I'm just, you already have enough going on, Because not only do I have type 1, but I have some other neurological stuff going on and it's just a lot. He's like I really feel for you and I'm like used to having stuff going on. It's almost better that it happens to me than somebody who has like a perfect who's in perfect health, because they were just being devastated by it. I'm just like, all right, add to the list. What's next? I don't even care anymore. I'm just like we'll manage it. Just keep looking forward.

Josh:

Definitely. A lot of them are in a weird way, connected, especially with working with this functional team. A lot of other things that I didn't even know I had going on have improved In a weird way. By focusing on this new thing, you may end up either decreasing another thing happening or just making yourself overall more healthy, and that's the way I try to look at it. We've identified something that's wrong. We just need to work at improving that and hoping that in the same mix we're alleviating other things that might be coming up down the road.

Lucie:

Yeah, it's true. And also there's something to be said for, especially with these things that are obscure, like the stiff person syndrome or POTS, it's really just nice to get. You actually don't have an official diagnosis, but you're pretty sure you know what it is. It's nice for me to finally say all right, it's POTS. Because I've been so exhausted to the point where I'm just taking so many naps during the day and like I get up from sitting down or laying down and like the room is spinning and I'm like what is going on here? All right, it's POTS. Okay, Now that I know what it is, then I can potentially treat it. I'm not crazy. Part of you feels like am I crazy? What is going on with me?

Josh:

There's real validation in that where you know, you're going and saying like this is wrong, this is wrong, and to finally get okay, yes, you check these boxes, this is what's wrong. You're not just not getting enough sleep, or something like that. There's serious validation in that, for sure.

Lucie:

Yeah, and I remember very clearly when I got diagnosed with type 1, when I went, I was 17 years old. I went to the health center and I was like I am sleeping all day long, I'm losing a lot of weight, I'm drinking water constantly, I'm skipping all my classes, and they were just like oh, you're just stressed out because this is your first time away from home and you need to just relax a little bit more and take it easier on your coursework. And I was like huh. And then so I was like all right, maybe they're right. And then this kept going on and on forever. I had to.

Lucie:

Finally, this woman that I worked, my manager when I was working at this vending machine company, she had type two and she had a blood glucose monitor on her. She told me prick your finger and it was like 600 or something and she's like you need to go back to the health center. I could see on her face that she was like, oh my God, she was horrified. But yeah, they just people, just send you away there. People will say, oh, it's stressed, this, it's that, and you just feel like really, is that, is it just that Like? I feel like I'm really losing control here. Like I usually manage my stress pretty well. I don't think it's stress, but who knows?

Josh:

So, yeah, he's so validated and especially at that age at least, I grew up thinking doctors knew it all and, to their credit, there's a lot out there now that they're dealing with that probably wasn't the same 10, 15, 20 years ago, and there's a lot more diseases. The metabolic issues going on in the US are just terrible and that's causing a ton of different issues for everybody. I don't think that they can keep their fingers on everything, but I just grew up thinking whatever the doctor said, that's what it is. It's hard, especially at a young age, to realize that you need to own your health and do your own research and if something doesn't sit right and you really don't think it's just stress or you're studying too much to get a second opinion, go find some other people that might have similar symptoms and things like that With your pox. Did you go into the doctor at all? Is this something you've been trying to chase down, or had you gone in and done blood work or seen somebody for it?

Lucie:

Yeah, I did a bunch of blood work and they were like there's nothing wrong with you. Sorry, we don't really know what to say here. And then when I got that diagnosis of sleep apnea, they're like all right, sleep apnea, move on with your life. I'm like, yeah, but I'm still really tired. What is going on here? I'm using the CPAP machine. I shouldn't be getting better by now, but I'm not. I'm like in shape and I'm like a decent weight, like. So people look at me and they're like there's nothing wrong with you, like it's in your head, like you're crazy. And I'm like I know there's something wrong with me, you know. So it's very easy for doctors to dismiss you when you look like you shouldn't have a problem.

Josh:

I've heard that a lot is, you know, especially with the type one, type two misdiagnoses, where they just people don't look like they fit the bill and they get the wrong diagnosis and push to push on until they end up in DKA or something like that.

Lucie:

Yeah. So anyway, when you have type one, I always say that like when you get diagnosed you should get diagnosed with like 20 other things at the same time. You really have to be on guard because it can feel like an avalanche of things hitting you and a lot of times they pretty rapidly like with you with the stiff person syndrome. That was two years, not even after you got diagnosed with type one.

Josh:

Yeah, just about two years.

Lucie:

Yeah, and I've had like frozen shoulder, I've had carpal tunnel on both hands, I have Dupuytren's contracture on my right hand. I have a pinched nerve in my neck which causes pain to radiate down to my hand. Now that's not entirely type one, but type one exacerbates any kind of nerve pain you have. So then now the p, it all feels like it and I have, oh, and I also have Raynaud's, which is also an autoimmune disease. It makes your hands really, and sometimes your feet, but your hands really cold, especially in the winter. You just can't warm up. It could take you hours. If you go outside for five minutes in the winter and you don't have gloves on, it could take you hours to get your fingers to warm up. A lot of people, type 1, get Raynaud's too.

Josh:

I need to check that out too, because I've got a list of things to be on the lookout for. I feel like once one autoimmune issue comes up, they just start slowly piling on after that. It's like something's infiltrated your body and like the Achilles heel where something's gotten in now and other things can follow. You need to be aware and really in tune and listening to your body and trying to keep a sense just on how you feel, week over week, month over month, year over year. Are you super tired, not able to get off the couch type stuff Like you mentioned, where, okay, I've got a lot going on, but for the last 20 years I haven't felt like this. There's something new going on. So I think it's super important, like you said, to just stay in tune with that kind of the symptoms and your day to day.

Lucie:

Yeah, and it can be very demoralizing and depressing at times At least for me it can be. And I want to normalize that because I feel like and it's just, it's harsh, it's really hard and there's a lot of people walking around and everybody's got their issues. I'm not saying that not everybody has their issues, because of course they do, and a lot of times you don't see them either. They're also invisible. They're dealing with family issues or a number of maybe their own health issues that you also invisible, that you can't see. But sometimes you just walk around and you're like is everybody else like living in a healthy body? And this sucks, like you just get. It just gets frustrating and it gets depressing. And it's a lot of internal dialogue to try to keep yourself like in a positive mood. And I imagine with you too, you've got a young child, you've got a wife, you've got to keep your job going. It's a lot to think about, especially when you're dealing with type one and physical limitations that make it literally hard for you to move.

Josh:

Yeah, there's definitely a mental health side to it that I don't think gets talked about enough. There's people that'll go on Facebook and vent saying I've had a really hard day, especially on the type 1 forums. I can't get my blood sugar below 300. I've used six times the amount of normal insulin. I've gone for walks, I've done this, I've done that, and every now and then I'll read the comments and people like, oh, it's okay, just trying to say, keep at it. And I just want to sometimes say let them have a moment, let them have a bad day. They came here because they're trying to relate to people that are going through the same thing and they've had a crap day.

Josh:

Obviously it, obviously it's good to keep people motivated and try to uplift them, but sometimes you just need to have a vent, and my wife is really good about it, where I try 99% of the time to do everything right, and when I am trying, sometimes it still goes wrong, and she knows that I just need an hour or two to have a pity party and just sit on the couch and sulk and scroll through Instagram or something like that. The mental health side of it is really important and I'm hoping that I can get some people on the podcast to talk about as well, because I think a lot of people think of mental health as someone doing something just crazy and outlandish that gets on the news. That doesn't have to be the case. I think so many people with diseases ought to go on, like you mentioned. It can be money, it could be family, it could be their job. There's so many things that affect mental health that I don't think we talk about and it's just not normalized enough, and I really think it should be.

Lucie:

Yeah, yeah, you're right. Like, the culture is very much about positivity at all times. And, yeah, sometimes you just want to be like, oh, this sucks, but um, as long. You can't wallow in it forever, but it does. You know, it takes its toll sometimes and you gotta let it out sometimes.

Josh:

Yeah, and that's a part of meeting a group or a community of some sort. Whether it's specific to your autoimmune, your disease, your whatever you're dealing with, it's good to have a group like that, or just an overall. I've seen the it's like mystery diagnosis Facebook groups when just people who can talk about their frustration of I can't get an answer to this. These are my symptoms. I've gone and seen these specialists across the country, across the globe, and I can't get an answer. And there's thousands of people that are in the same boat and they can at least find community in that, where it may not be the same exact issue but they're dealing with the same effect that they don't know and they're not getting validated, like we talked about earlier, where they know something's wrong but they can't get an answer for it.

Lucie:

Yeah, and that's the hardest part, is not having an answer, not having a diagnosis.

Josh:

One other thing I definitely wanted to talk to you about is one of the goals with Rebel Health is talking about self-advocation and taking it on your own to really fight for your health with fasting. I can't remember if we talked about it or not. Did you get any pushback from your doctors with fasting once you started the protocol?

Lucie:

I started it without. I'm a little bit weird in the way I use doctors I do my own thing and then I tell them about it later. I think a lot of people go to their doctors, seek advice and then and this is not medical advice, by the way you should, if you feel like you want to talk to your doctor before doing things, you should absolutely do that For me. I'm like oh, I heard about intermittent fasting. I want to try it. I actually heard about it on the Juicebox podcast. He had Scott Benner had Jen Stevens on who wrote Fast Feast Repeat and I heard them talking about it and he said I don't know of any type ones that have done it and she's like I don't either, but I think it might be good. I was like I'm going to start it. I literally started that day. I didn't talk to anybody about it, I just did it. I had, by the time I had been doing it and went to the doctor, it was probably already a couple months later. So I just told her that's what I was doing and she could see the results were really good.

Lucie:

I'm not a person that like I know certain people. They'll say, oh, I feel like I'm waking up with high blood sugars, I'm like, all right, well, you need to change your setting on your insulin sensitivity, or you need to change your basal in the morning so you don't go as high to combat your dawn phenomenon, right? I change my settings all day, every day. They're constantly a working process because my body is shifting every single day, whether it's perimenopause or activity level or emotions or stress. There's a thousand different things that are changing my settings. I don't stand on ceremony. I don't wait for anybody to tell me to change my settings. So usually when I go to the doctor, I'm like I'm trying this out. Are you seeing something I'm missing? I'm fasting these hours, so you're going a little low here. Maybe back off your basal.

Lucie:

She's very interactive and proactive with me and then I say I want to try Munjaro. And then I've already done the research and I tell her or I had started IAPS. And she's oh wow, tell me about that. I don't have any other patients doing that. How does that work? And, of course, iaps is so complicated I don't even know how to explain it to her. But anyway, I come in with my own plan and then I'm collaborative with her, like sometimes she'll suggest things to me, but usually it's her tweaking something I'm already doing. If that makes sense, awesome.

Josh:

No, totally, and that's the way it should be. You should go into the doctor's office with your symptoms written down, things you want to try research, what you could possibly be doing to improve it, and I think that's where we need to approach going into the doctor so we don't waste our 15 minutes with list out what you want to talk about and be ready to talk about it and don't just wait for them to say we could try this or try that. Have those things written out and just show that you've done your research already. Because I approached fasting in a similar way where I was in between appointments I just started it and said I'll talk to my endo when I get in because obviously if I'm having a bunch of lows or something like I'm going to stop, I can check my blood sugars and I can officially say if it's safe or not and if something's going really wrong I'll just stop.

Josh:

He at first was not a fan of it. He said he didn't have any other patients that he knew of that were actively doing one meal a day and extended fast and everything. And I was like look at my the last I think it was a month and a half of CGM data. Standard deviation is almost nothing. I'm having less lows than I was having before because I'm not on the roller coaster going up and down and we were able to look at the data and he, thankfully, was like all right, we can keep this up. But I want to really next, I was going in at every three months.

Josh:

At that point I really want to keep an eye on your levels and make sure that you're not having a bunch of lows and all that stuff. So by having the data and your podcast and doing some research, I was able to back myself up where previously it might've just been no, like I don't recommend this. And since he was a doctor, I was like, okay, like I probably shouldn't do this. Then I'm glad that's the way you go about. It is. You know, do your research first, walk in and still work with them, because they do know so much. They did go to school for a very long time and so they really are a good partner to work through those things with. But I think it's on us to go in and have some of the groundwork done first.

Lucie:

Yeah, and honestly, if there's something you really want to do when you're doing it and you like it and they're like you shouldn't be doing that, maybe you get a second opinion. Maybe try a different one, because not all doctors are created equal. What do they call the person that graduates last in their class Doctor? Maybe it's time for you to find somebody better that's more aligned with what you're trying to do. They're working for you and not the other way around. You have to make sure that it's a good fit. It's like any other relationship or partnership.

Josh:

And that's actually I think we talked about it on your first podcast. When I came on, I switched doctors because he wouldn't give me a pump.

Josh:

I was six months in and we had our son Bryson, and I was forgetting my insulin everywhere. We went Between the diaper bag, getting the car ready, getting bottles, just trying to get my phone and keys I would forget my insulin. We got to eat I'm like not having dinner tonight here, I'll have to wait till we get home. And so for me it was more so like my control was really good, but I was forgetting my insulin, and so having it literally attached to me is a really good way to not forget it. So that's why I wanted it just for the more, so not to improve my management, but to improve, like, my ease of life. It was just it talked to my Dexcom. It gave me insulin throughout the night.

Josh:

It just seemed like a really good way to improve my quality of life, and he said that my control was fine and I didn't need it. And it wasn't about needing it, it was. It's a really good piece of technology that's out there that I want to be able to use. So ended up just changing doctors If they're not working with you and they may say that no, you shouldn't do this and have a really good reason to back it up, and that's one thing If you're trying to do some crazy experimental thing and they say no, there'd be a reason behind that. But if it's just them being hardheaded or not wanting to do something, change them. There's a lot of doctors out there.

Lucie:

Yeah, absolutely, and my doctor's great too, because I used to take a Fresa.

Josh:

It's inhaled in the sun, yeah.

Lucie:

There's a subset of type ones where it basically just stops working for them and I'm unfortunately in that subset, so I have to back off it for long periods of time and then reintroduce it because I don't know if my body just doesn't recognize it anymore or what. But that's actually not the norm. Most people can take it for every day, many times a day for years and be just fine. Then in my doctor she said you're the only one of my patients that's on Afreza, but I'm going to figure out how to get it prescribed to you. And I had already done the research about dosing and things like that. A doctor that's willing to go there with you is what you really what you want.

Lucie:

And, like I said, if your doctor's not that person, I've had diabetes for 27 years. I think I've had at least 10 or 15 endos over the years because of people moving, people retiring, and I've seen all different kinds and the one that I have now is really the best one I've ever had Somebody that works with you, somebody that doesn't shoot down your ideas and they're willing to, even if you're the only patient doing it, just like I'm the only patient of hers, at least when I saw them last on IPS. But she's, I want to learn about it and that's great. That's what you need.

Josh:

Yeah, definitely. I love my endo now as well. I think as long as he's around I'm going to continue going to see him, just because he's the same way where he always asks me about fasting and if I'm trying anything new. I seem to be more into the tech side of it. So he's always asking like what's coming out next? When's the next Dex Tom and that kind of stuff coming out? I love him, but his front office is just a mess. Trying to get an appointment or change an appointment or send in something. It's just a mess.

Josh:

And my T-Slim trainer that whenever you get assigned, if you get a trainer, they teach you how to do it. She was trying to get the prior authorization sent to her so that she could get a pump sent to me and she ended up driving like three hours on her own time and just sat in the waiting room until they handed the piece of paper over to her. She was in two weeks and finding those kinds of people that will fight for you. It's just, it's amazing and they are out there. You just have to find them. You go until you find that person that fits with you, Because some people want it like sugarcoated and some people just give it to me straight, rip the bandaid off, and so you've got to find who fits your personality and what you're looking for in a health care team.

Lucie:

Yeah, and actually you bring up a really good point about a great doctor but not a great front office. I've experienced this many times. I've experienced this many times and my strategy is to find somebody in that office that is reliable and that you can get their contact information so that you can just deal directly with them. Because if you're waiting in the line and some random receptionist picks up and they don't have good office management, you're going to end up in that loop. But if you have a contact there, or even the doctor themselves, just email them and just say I need this done and see if I mean it sucks for them because they should be using their time doing other things. But if they don't have good practice management, then that's kind of how you have to deal with them.

Josh:

Yeah, definitely, it's just going back to owning it. One way or another, you've got to get through and figuring out how you can. No, it's more important to have that doctor that I really enjoy and can count on. So important to have that doctor that I really enjoy and can count on. So the rest is just a part of it.

Lucie:

Yeah, maybe he has a nurse or something that's responsible and reliable.

Josh:

They actually. They just started the. It's called Heal Low, yeah, so he's actually super responsive on there, so luckily I've just been able to send a note through there If I'm low on insulin or something. He's been really good about refilling through there and makes it really easy.

Lucie:

Yeah, it's a common issue. It's just the doctor's great, but the office is just not well run. I have that even to this day with certain providers that I have and it's very frustrating.

Josh:

Yeah, it is, especially when you're dealing with a lot of them too. It was just one central hub for everything, but when you're seeing six, seven different people a lot, well, we're getting close to our time. Is there anything in particular that you would like to leave as a message? You know, for either self-advocation We've touched on mental health. You've been a great influence on me. Every time we talk, it seems like we both are in that same. This has happened now, but it's always a fun and refreshing conversation because I know that you're going to push through and you're going to find a way to kick its butt.

Lucie:

Yeah.

Josh:

Just, anytime you speak, I'm all ears.

Lucie:

Oh, thank you. Yeah, it's been such a pleasure knowing you and that's what I think you're going to love most about having this podcast is you're just going to meet so many wonderful people and it'll really help you with your own journey, because that's what I found doing. My podcast is it just helped me improve my own health outcomes it's just. Your podcast in particular is really needed because people do need to advocate for themselves and I think that's a real area that is lacking, especially if you're new to your diagnosis and you've never had any other health issues in your life. Like you said, a lot of people just trust doctors and they don't think outside the box or they're just going along with the program.

Lucie:

I've had diabetes. You figured this out really fast, which I'm very impressed by. It took me much longer to figure this out, but you're in control of your health. Your doctors are there to support you, but you have to do all the work. You have to advocate 100% for yourself all the time. It can feel like a full-time job, but the better your diabetes and any other health conditions that you have chronic or otherwise the better your outcomes will be over your lifetime. It's in your best interest to just constantly be on this stuff and always be outside the box, whether it's FDA approved or you're doing an algorithm that I think IAPS. I don't know how many. I think it's like a thousand people in the world are doing IAPS. It's not that many.

Josh:

No, it's not.

Lucie:

Trying weird things and just always being on the cutting edge. That's how you get the best outcomes, in my opinion.

Josh:

And I totally agree with that. You need to be in the know and up to date on stuff, and I figured out owning my health early because I stumbled on a podcast at 4.30 in the morning walking down my blood sugars. I know you've helped a ton of people out, so I really am thankful for time that you've spent building the community that you have.

Josh:

I have a family member who was recently diagnosed with type 2 free diabetes and I used a lot of who was recently diagnosed with type bulls free diabetes and I used a lot of what we've learned on your podcast and I know she's listening to some of the different episodes centered around type two and those episodes have been motivation as to hey, I can reverse this thing and it is things that I can do now. And without ever actually going to the doctor, we were able to start getting her A1C back down. She did blood work and it was going to be like three or four months before she could get into seeing endo and we were like we can't wait that long, we need to start doing this now, and now we're on the right road before she's even been able to go in and see a doctor. So that's incredible.

Lucie:

And then, as hard as it is for us personally to go through these things, if you can then turn it around, use your experience, help others.

Josh:

That's exactly what you're doing. Cut down some of that burden and whatnot for others. That's the goal.

Lucie:

Yeah, super proud of you. I can't wait to listen. I've listened to your inaugural couple of episodes and I can't wait to listen to the content out. So keep up the good work.

Josh:

Thank you for joining us.

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Josh Bostick

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