Jamie Nicole: Turning Diagnosis into Purpose

00:14 - Kerly (Host) Hi, everyone, welcome to season 2 of Narcolepsy Navigators brought to you by Naps for Life Narcolepsy. Narcolepsy Navigators is a podcast for raising awareness of this fascinating illness through a deep dive into the lives and individuals living with narcolepsy and idiopathic hypersomnia. I am Keri Boger, the founder of Naps for Life Narcolepsy, and welcome to our stories. Welcome to Narcolepsy Navigators. I'm Kirli, your host. I have narcolepsy type 1. And today I'm here with Jamie Nicole. She's from the United States and she's a health coach, and welcome to her story. Hi, jamie, how are you doing today? I'm doing fine. How about yourself? Yeah, I'm okay. 01:03 Today's been a more chilled out day. I spent some time with my cousin online who does hypnotherapy and wanted to try to do that to help me with my narcolepsy. I'm not sure how that's going to work out, but I just wanted it to indulge him and see how it might help in other aspects of life, like with stress and maybe with the hallucination or dreams. I'm not sure. Maybe that it could help in that way. I'm trying to be open-minded, but I don't believe that hypnosis is going to help me stay awake, but I'm sure that it could help with other aspects of life and stress. I have other comorbidities that are stress related or stress induced. So maybe it could definitely make an impact in those areas. 01:52 - Jamie (Guest) And when you get a relief in one aspect of one illness it sort of gives a little balance to the other somewhat stress is a big trigger for me too, one of my main triggers, and I've noticed lately, when I'm under more stress my dreams are more vivid, so maybe in that way it may help. 02:08 - Kerly (Host) Yeah, so he's going to send me something to listen to this week, so keep an open mind. Yeah, let me know how that goes. Yeah, I will. So if you tell everybody who you are, how old you are, if you feel comfortable, what state you're residing in and what year you were diagnosed and what type of narcolepsy you have. 02:37 - Jamie (Guest) No problem, my name is Jamie Nicole. I am a certified health coach specializing with those with autoimmune disease. I'm also a fitness instructor. I'm also the executive director of a non-profit focusing on the BIPOC community with autoimmune disease and helping underserved communities. I reside in the great state of Texas in the United States. 02:54 - Kerly (Host) So you're a second Texas person that I've interviewed. 02:59 - Jamie (Guest) Yeah, we have a few narcoleptics down here. I'm actually from Houston, texas. I'm not sure where they were from, but I know one other one that I researched from Project Sleep, because whenever you have someone that looks like you, you want to connect with them as well. So I haven't been able to connect with her one-on-one, but hopefully soon. 03:17 - Kerly (Host) That's good. 03:17 - Jamie (Guest) Toby, you asked me the year that I was diagnosed. Unfortunately I was diagnosed late age. I also didn't mention what type of narcolepsy I have. I have narcolepsy type 2 without cataplex. Do more tests to figure it out sooner. So I didn't get diagnosed until I was 39 years old. I'm 44 years old now but in retrospect, going back, I had at least been having symptoms since high school. 03:57 - Kerly (Host) That's a long wait to get diagnosed, wow. 04:01 - Jamie (Guest) You're telling me and like the impact on my life that it had and it was kind of like as I got older it gradually got worse. I thought it was something that I could handle in high school and I also thought that the symptoms were normal because of all the things that I was doing. Most people I know with autoimmune disease, you know narcolepsy very type A into everything, very goal oriented, achievement oriented, and that leads to not sleeping as much on purpose and also high stress that triggers those. You know those bouts of excessive sleepiness. But because of how narcolepsy works, where you have the excessive daytime sleepiness during the day and then the insomnia at night, it was at first I thought it was like a benefit. Oh, I can stay up all night and get my work done and stay up hours of the morning and not, you know, have any issue. 04:55 But on the back end of that in high school I was tossing back. I'm not sure if you have that habit. In the UK it was called no-dose. They still have it here in the US. It's like almost a caffeine pill. So I was, you know, popping caffeine pills. I was. We have another thing I thought my iron was low. My family was like maybe your iron is low, that's why you're tired all the time. So we have a yeah, all out of the bottle, trying anything just to stay awake, but not ever thinking in a million years that it would be a narcolepsy diagnosis years down the line. And so I even started having Go ahead. 05:32 - Kerly (Host) Have you heard of narcolepsy before your diagnosis? 05:36 - Jamie (Guest) Even things that I had heard of narcolepsy before I mean in passing, but nothing that I had really paid attention to or seen myself. So it wouldn't have been anything that I would have taken to the doctor as a diagnosis. I just thought again, just to set the picture. I was in AP or advanced classes in senior year and I'm not meaning to brag, set the picture. I was president of honor society and student council at the same time. So I had a lot on my plate. So it just became normal. What wasn't normal and should have been a clue. 06:06 I had a calculus class and it was right after lunch. Again, not suspecting anything because I always felt tired, I had an arrangement with my calculus teacher to sleep on the floor in the back of his class during class. So it would be lunch period. We would go to his class. You can go to the cafeteria or you can bring your lunch back to his room. I would eat lunch. 06:29 But you know, after lunch I was like I was a little bit extra sleepy. But I had made arrangements to where I would go to the school early in the morning, so early that the doors would be locked and the janitor I made friends with the janitor coping mechanisms to make sure I get my stuff done, to let me into school. And so when I had a fresh mind and it wasn't after lunch, I would work on my assignments and it was also easier for me. Maybe because of the brain fog, it was easier for me to learn from the book and doing the problems repetitively instead of trying to when I have the excessive daytime sleepiness and my eyebrows are raised because I'm trying to concentrate hard. Don't understand anything that you're saying. I just couldn't get it. But because I had, you know, I think at that time high grade, a high A in the class. He allowed me to do that. But imagine, like not thinking anything, those cold, hard floors, concrete floors, with your backpack as your pillow laying on the ground. So that in and of itself should have been a clue, but it wasn't. 07:31 Then it carried over into college. It had gotten to a point there where y'all have Starbucks. I'm sure I saw Starbucks when I was over there in France, but we were just talking about different ingredients and different things that were allowed Over here. It had gotten to the point where they would allow me to get up to like four additional shots of espresso. Because again. I'm just trying to cope. I'm in college, I have classes, I'm working. I mean. 08:00 I remember one time I go to the window and I'm like, well, give me a grande with five ad shots. I kept adding them on and the lady was like ma'am, I don't think that's safe for you to do, but it's also not safe for me to fall asleep at the stoplight either, which is something that I was also doing. Again, a lot of things in retrospect. As I got older, the symptoms got worse, and so when I was in my classes and I couldn't comprehend as well as I used to when I was younger, in high school, I thought that that was a reflection on my competency compared to other students in the classroom, imagine. And then also I had a lot of other stuff going on. I got married at a young age, two kids divorced, all while in school. 08:45 - Kerly (Host) Oh my gosh. 08:46 - Jamie (Guest) You telling me we talked about stress earlier, working full-time, and then I was in a dual program, so I was getting my bachelor's and my master's at the same time in accounting. Oh you just love to push yourself. Partly some of my fault. I said that I mentioned the type A personality earlier. Yeah, but again, because I was had I not been doing all that and still been that exhausted, I may have picked off on the fact that something was wrong a little bit sooner, but because I didn't have the cataplexy and the insomnia, which is also a symptom, was to my benefit, then I didn't really think anything of it. 09:23 Of course, if you have all those things on your plate, you're going to be tired. 09:28 - Kerly (Host) Yes you would. Anyone would be tired With what you had juggling. You must be tired. Yeah, there's no one that couldn't be tired juggling all of that. 09:36 - Jamie (Guest) Yeah, so that was what early 20s it was another 15 years before I got a diagnosis. So, and then another thing is too. We were talking about, you know, the rising voices, and I realized that I wasn't having as many of the lucid dreams or the hallucinations. They were so far and few in between at that particular time. I think I maybe had maybe a couple in high school that I can vividly remember, but I didn't have a lot, and even in college they were far and few in between. It wasn't until I got a little bit older where I started having them repeatedly and they were a lot more vivid and they felt a lot more real. That I actually, you know, was concerned, but again, that was still before the diagnosis and I had no clue that it was associated with narcolepsy at the time. 10:26 - Kerly (Host) When the dreams started to get worse, what did you think was happening? 10:29 - Jamie (Guest) Okay, so this is not when they started getting worse. This was from the very beginning, and it's a part of my story that I tell with the Rising Voices when I start out, that my family is a very religious family. So the first one that I had both my grandfathers were preachers. I have a few bishops in my family. So the first one that I had, like all of my, both my grandfathers were preachers. I have a few bishops in my family. Very one first one I remember is is, though I was right between sleep and wake cycle or time, and I was was levitating out of my body. It felt as though what you see on TV, where you see people and they pass away and they are levitating. But I'm fully aware of what's going on. So I'm like, at that point I'm just talking to Jesus, it's not my time, it's not my time. I don't know what's going on, but it's not my time. And then the second thing was after that, growing up in the church, the only thing I noticed ain't nothing but devil. 11:23 - Kerly (Host) And all. 11:23 - Jamie (Guest) I know is that demons flee at the name of Jesus. So it was Jesus, jesus, jesus, jesus, jesus. And at that time it worked Like. After I did that, I returned to my body and, you know, went and ran into my mom's room. I was like I don't know what that was, but it was too real for me. But again, I never had that specific experience again. And the second time it was in college and I think it was right after I had my son, right between going to sleep and you're halfway asleep and you're halfway awake and I don't have a TV on but I see a shadow and I'm like, okay, making sure there's nobody in the room with me, because it was a human figure, but it was, was all black oh, yes, we have the hat on. 12:07 - Kerly (Host) Was it the man with the hat? 12:08 - Jamie (Guest) oh, no man with the hat. No man with the hat this time. I don't remember if he had a hat, but I'm just like looking, I'm like. And then it got a little closer and I was like nope. So I was like, well, let me just turn on the tv, because at that point I'm wide awake and I'm scared to go back to sleep. So I turn on the TV, so there's a little light and it maybe happened one more time. But then again after that I don't recall. But I don't recall any more instances where I vividly remember having an incident like that. And I know with the others they have those occurrences on a regular basis and it's every night and sometimes during the day. I've never had anything during the day. I'm never in shock again. 12:52 As soon as I found out, I wanted to learn as much as possible, and even through the Rising Voices program, listening to everybody else's story, I'm like, really During the day. But I was also a little envious because they were able to be medicated in high school and college. Like I went through all of that unmedicated, and as driven as I am, as type A as I am, I'm like, and even to this day I'm like I could have if I didn't have this disease. I could have been Oprah because I'm working hard right Like I'm busting my behind. I'm not where I thought I was going to be, but if I didn't mention, I got diagnosed when I was 39, but I had an autoimmune diagnosis when I was 35 that also has a symptom of sleepiness. So, as most autoimmune diseases do. So I mentioned I'm an autoimmune coach and they, you know they don't classify type two I've learned as an autoimmune disease, more so type one. But I'm starting to think there's a connection with that as well and starting to see, yeah, it's on the autoimmune disease website, so it is classified. So it's basically your body. With all autoimmune diseases, depending on what you have, it's just your body attacking an organ. So it's the body part is it is is what the autoimmune disease is classified. 14:29 So my auto, my first autoimmune disease, impact my thyroid. I have Hashimoto's thyroiditis. With most autoimmune diseases it comes with the excessive fatigue and I'm actually seeing more and more of in two different groups. So I see the people with the autoimmune disease who are think that they're managing their autoimmune disease well but still have the excessive tiredness, like I did. And then I put more people with narcolepsy getting diagnosed with autoimmune disease, and so the questions have been in both groups. 15:04 So I thought that, after you know, I'm learning about my Hashimoto's and getting that under control, eating the right food, so I'm getting the right test done. That, that was it. But the problem was I wasn't educated, as I am now. Subsequently in 2020, I got a certification as a certified AIP coach and then, right after my first diagnosis, got a certification as a health coach. But before that, I did not realize how important sleep hygiene was. Like we talked about it but I wasn't living it. I went right back into that on go all the time. Let me advance at work, sleep isn't as important as the diet type mentality. 15:44 - Kerly (Host) It's understandable, because that's what they push in the world yeah, that you only have to focus on those. 15:51 - Jamie (Guest) And especially I know we've talked a lot about america and europeans and all that and the go-go-go nature of how it is here in the us and to be driven and all work, rest later kind of plays into that. You know mentality that you have, that you always have to be competing, you always have to be, you know climbing the corporate ladder and you know rest is secondary and it's okay to be stressed because stress is good for you. Small amounts of anything, small amounts of inflammation is good for you because it's healing your body. But once you go over that threshold and you can't move, and once you go over that threshold and your stress turns into adrenal fatigue and you can't function properly on a regular basis, then it becomes an issue and so the fatigue afterwards was just so debilitating, was just so debilitating If I think about at that time I had made it up to supervisor and had to end up stepping back down because I had my employees in my office. 16:52 I'm trying to do reviews and I'm looking dead at them. It's like you probably understand, Curly, I can hear you, but I don't understand a word that you're saying because I was just it's like the computer is trying to turn it so far, and sometimes that you're saying because I was just exhausted. 17:06 - Kerly (Host) It's like with the PR, it's a ton. 17:07 - Jamie (Guest) Sometimes when you're going into that sleep you're like my bad, my apologies. And so luckily and I know everybody isn't blessed to have I had an awesome doctor. So when I went there and we did my autoimmune tests and everything was in the functional range and I was still exhausted. She also had a checklist of other symptoms, so she didn't just go by those lab tests and she took me seriously Every time I went in. Instead of one check by the exhaustion or the tiredness, sleepiness, it was three checks and so we kept going through the motions. I ended up having one test where she tested I had an Epstein-Barr flare. 17:46 I'm not sure if you're familiar with Epstein-Barr. No, what's Epstein-Barr? Yeah, it's a virus. Like with most, autoimmune disease are triggered by viruses. It's a virus. Maybe you have heard of mono mononucleosis, yes, yes. So go back. 18:07 I had mono in the ninth grade, uh-huh, so that I think that was one of the triggers for me. Even getting you know autoimmune disease, even though it runs in my family, you have to have a have a trigger for it as well. That's the symptoms starting in high school. So all of this is connected. So I didn't know at the time. It's sort of like with chicken pox. Later in life you can get shingles. If you have mono, it's the epstein barr virus and you can have a flare that leads to a type of fatigue and even sometimes I've read that people have said that it leads to the chronic fatigue syndrome. So what can happen is you can have an epstein barr flare where that tiredness comes back. So I had that had to be put on antivirals for that. This was maybe when I was 37, so two years before my diagnosis so when you're, when they have the Epstein-Barr flare, does it? 18:56 - Kerly (Host) can it be cured or is once it's once it's ignited, that's it. 19:00 - Jamie (Guest) It just stays in the body the Epstein-Barr, just like with the, the chicken pox, always stays in the body. Some people get shingles and some people don't. Some people may have an epstein bar flare, some people may not. A lot of it has been linked to increased stress and so your antibodies go up because it's a trigger, and so that's what happened with me. I got on the antivirals. I had to take some time off of work. That that's how exhausted I was and went through that particular scenario. I was still exhausted. Then I was having problems, and this was why I always say people always link it to autoimmune disease. It could be a number of different reasons why you're tired. You have to go through their process of elimination. So after that I was having my cycle curling for almost like a year straight with no break. What I mean is 10 days on, couple days off, another 10 days, couple days off, that's horrific that's horrific, but what does that cause? 19:57 you're tired all the time how do you cope this? 20:02 was 5 months after the Epstein-Barr flare. Then I ended up having the urine um fibroid embolization to cut off the blood supply and then that was that was helpful. So then it's a year has gone by and I'm getting worse. And we've gone through the process of elimination with my vitamin d levels, we have checked my hormone levels, we've gone through the process of elimination with my vitamin D levels, we have checked my hormone levels. We've done all of the above. And so at this point, when I'm able to make it to the doctor and I say that because because I didn't know it was narcolepsy, because I didn't know my body and my sleep cycles and when I was awake I would make the appointment sometimes in the morning and it was an hour away. So sometimes, where I would wake up, I'm like I cannot, I can't. This was before, before COVID and before telehealth they weren't going to take my appointment over the phone. So when I finally did make it into the doctor and by this point I'm in the office crying because I'm just like You're overwhelmed. 21:06 Yeah, because I remember how achieving I was one of the fastest managers who moved up in the organization. You know, black woman, that's an achievement. But also, at the time too, I didn't want to look like the Black woman in the office that wasn't able to do her job. So I didn't feel comfortable telling people, because what are they going to say? Oh, just get more rest, everybody's tired. So I felt alone A lot of times. I felt depressed. 21:32 But in the back of my mind I'm like I'm a fixer, I'm a go-getter Once I figure out what it is. If I just keep fighting to figure out what it is, then I'll be able to catch up. But then it became a time where I'm like it's a year past, I still haven't figured out what this is. What am I going to do? So one day, when I was in the office crying and we had gone through the process of elimination, the doctor said well, I think it's narcolepsy. And you know you asked earlier was I familiar with narcolepsy? Like most people, they are not. They have the experience of what they see on television. They have the experience of what they see on on television. Then, to be honest with you, I'm just. You know, there's certain diseases that run in the black community that you're familiar with. That could be that, but when she said the white lady, I love my doctor, I cried. When she moved, she was like not to let. 22:17 - Kerly (Host) She was like now you, just now, you're just throwing anything out there like I didn't like yeah, I've heard some people say that like they're like no, that doesn't happen to black people, that's but and so so much, so curly, that I was delayed and making she referred me out. 22:40 - Jamie (Guest) I was like I'm not gonna waste my time going to get a sleep study when we just we just trying to throw like you throw spaghetti on the wall to see if it's thick. At that point I was just like fed up with everything and everybody. But as the symptoms kept getting worse, I'm like, well, I might as well go and get it checked out. Maybe it's sleep apnea. My dad has sleep apnea, it could be something like that. So, and even with that, I remember making the appointment at the end of 2018, because I guess it's. You know, a lot of people are having sleep issues I couldn't get another, get an appointment four or five months. Oh, wow, I had my appointment in, I believe it was April. I had my sleep study in May and, boy I tell you, I was in shock. So I did not have sleep apnea at all. I slept like a baby, which is surprising, because the next day, when I was trying to stay awake after having a good night's sleep, I went to bed and they came back and said narcolepsy, type 2. 23:48 And I looked at the report and saw the time that it took me to go to sleep after the first one. The first one was the longest by two minutes. After that Cause you know they do it at six, eight, 10, 12, four, four. Currently it was 30 seconds. I was out and then they were out. They were so cruel I know most people with narcolepsy who go through this say this. They were like you can't go to sleep in between. So I'm in the chair, I'm struggling. Yeah, I'm trying to get away, because they want you to go to sleep every every two hours on the hour. And then he was like. He said he was like you got some of my results and then he was. They were like oh, the time that it took you to get into REM sleep was less than 10 minutes, and so I'm arguing with the man because this is before I got the results. I'm like I didn't even even go to sleep. 24:34 - Kerly (Host) Yeah, he was like me yeah, yeah, I said the same thing because they were waiting for me. I was like why are you waking me? I literally just fell asleep and they're like no, you've been asleep for. I was like no, that's not true. 24:51 - Jamie (Guest) Mind you, I was looking forward to those every two hour naps because, I was taking four fits. 24:56 - Kerly (Host) Did you feel that when it was coming closer and closer to that time when you needed to nap, when they were forcing you to stay awake, that's the time when you needed to nap? And then they would go? I don't know if they did the same for you then they'd go and close the blinds and everything and then say go, lay down or whatever, and then that's when I wasn't sleepy. It was before, when they were like walk up and down around the hospital and stuff like that. I was like no, because I'm tired. Now, now is when I want to have the nap, not stay awake, yeah. But when they put me to lie down, that's when I was like I don't know why I'm lying down now, because I'm not sleepy. 25:33 - Jamie (Guest) Now I'm not going to sleep, I don't know I was tired and I went straight to sleep. 25:38 - Kerly (Host) I always said, but I didn't know, because they would come and wake me back up and I'd be like I just fell asleep. I just fell asleep. 25:48 - Jamie (Guest) He was over the speaker. He had me and a little speaker. I'm arguing, sir, at that point, after you do that a couple of times and you're not able to go to sleep no coffee, no caffeine, no nothing. And I was like I've been asleep. He's like ma'am you, oh, I would. And in retrospect I was having entire dreams, but it just didn't seem like, maybe because I was so tired that I was getting that. I was sleeping for the full 15 minutes. But I was having full dreams. 26:18 And again in retrospect, and then afterwards doing the research, realized that I do that all the time. I'm asleep like that and then I have these wild dreams. And because the dreams are so wild I don't know, sometimes maybe it's my subconscious I'm mad at somebody, I'm in a fight with somebody, I'm a wrestler, it's something that's high impact, high action. So in my sleep I could be fighting, I could be moving around. So when I wake up, it's like I have not had any rest at all. The sleep is not restorative at all. What's the point? What's the point at all? Sleep is not restorative, oh, what's the point? What's the point at all? And even now, um, I don't know if I'm again putting too much on my plate. Night after night, at the night, my dreams have gotten so outrageous. I don't know if it's because I'm getting older, getting closer to menopause, but I I dreamed the other day I'm like I going to have to have somebody do an interpretation. I was put in jail because I complained about somebody doing my hair wrong. I was chased by zombies, like it was all kinds of. It was every night and I've never had that happen. So even after the diagnosis, I'm still finding new. You know, I've been diagnosed guess what five years now. It's never the same every night. It's never the same every night. It's never the same every week. I feel like I'm okay sometimes and sometimes I'm not. What helped me the most through all of this? Let me just back up a little bit. 27:50 Getting the diagnosis was a relief. I know it wouldn't seem like that to most people. No, definitely I can't fix it if I don't know what it is. Yeah. People no, definitely I can't fix it if I don't know what it is, yeah. But then we went after that. It still was problematic because I couldn't. I had a hard time finding the right medication and so I went through the series of what my insurance wanted me to go through in that process. Luckily I had some great doctors. The first doctor referred me to another doctor who was not only a sleep specialist but a neurologist as well, a Black lady, and so she was basically like I'm just going to be real with you they do the clinical trials on people who don't look like us because it was causing me to have other issues. 28:31 I was starting having problems again with my cycle, and I'm not sure if it's like this with you. Even when I'm medicated and I'm on my cycle, the medication doesn't work as much. I'm still more tired, and now that I know what it is, I can kind of account for that. But the medication was causing me to have like extreme symptoms, even to the point where I, when I was on the Zyrem and Zywave the one that helps with the insomnia it was causing my heart rate to spike when I was sitting down. So sometimes I would be sitting down and it would spike to 143 and I would get dizzy. 29:06 And so it was after that where I'm like OK, I got to figure out what this is or not necessarily what it is. How can I rearrange my life, my lifestyle, what I'm eating, what I'm doing to kind of help supplement the daytime medication, because I finally found one that works, but I couldn't do the one for insomnia anymore, the Zyrem on the Zywave. So it wasn't until what? Was it 2021. I had just become a certified AIP coach the year before, and so I just decided to tackle everything at the same time. And so I just decided to tackle everything at the same time. There's a certain diet that you use for AIP or autoimmune protocol, to minimize the inflammation. And then I also have been following a lady I forget her name, I think her name is Dina who does Mad Cal Keto. She speaks at a lot of different narcolepsy conferences. 29:53 - Kerly (Host) Oh yeah. 29:54 - Jamie (Guest) Yeah. So she implemented or advocates for keto and I wasn't a keto follower. I didn't do it to a T and the only reason why I took it into consideration because I highly believe in bio-individuality and what works for me may not work for the next person I had done a DNA test that said that I was carb sensitive. Remember when I was talking about going to sleep at lunch and sleeping on the floor? Those carbs are doing me in. So when I implemented a plan of working out in the morning to get my endorphins going, because I knew that, because I was teaching fitness in the evening times but not really in the morning time, so doing fitness in the morning time, letting my digestive system rest, not eating anything in the morning time, doing like an intermittent fast so I can get a little bit of time in the morning when I'm on sleepiness to be as alert as I possibly could be, then I would eat in the afternoon, 12 o'clock on the dot, and then I knew immediately afterwards I was going to need a little nap. And then that's how I began to manage it with food, watching the foods that were triggers for inflammation, triggers for sleepiness, and it made the world of difference. 31:02 I wasn't trying to lose weight at that time either and, mind you, when I first got my Hashimoto's diagnosis, that is what I was trying to do. I was drinking green smoothies. My calories in were less than my calories out. I was working out all the time, but the weight gain was just a symptom of something else that was going on in my body. I wasn't getting to the root cause by going to the gym and, you know, drinking green smoothies. We spoke a little bit about that, you know, earlier. So when I started addressing specifically the autoimmune disease, specifically the narcolepsy, not only did I regain control of my life, a lot more. I still have those bouts of sleepiness, especially when stressed. I still have the dreams every once in a while, but it allowed me to gain back some control over my life that these chronic illnesses had taken. 31:50 And then on top of that, I lost 60 pounds. 31:54 - Kerly (Host) Wow, that's a lot. 31:57 - Jamie (Guest) You telling me um and again. 31:58 I tell people because I and I didn't count calories, I did. I mean, I know this is very cliche. I ate very intuitively. On days that I was hungry I ate more. On days I wasn't hungry I ate less. I was eating specifically for okay. 32:13 What did they say is best for narcolepsy? What do they say is autoimmune disease? Regardless of the calorie? No macros, no anything. My goal was I don't have, regardless of what size I am. 32:23 That wasn't the goal, and a lot of that was just inflammation. A lot of it was just stress. A lot of it was just me not knowing how to best feel my body for the conditions that I had. And so once I learned that it was game on like a whole entire new lease on life. Now, mind you, I still in my mind a little resentful of having the disease right. It's just like I could have been a lot more further in life. This wasn't the life that I signed up for. In my yearbook I said I was going to be in New York being a mover and a shaker and a fast paced life. My body, my body in the narcolepsy, says no, you're not. 33:03 It's through that experience I mentioned earlier that you know a woman of faith. An entire family is in the faith business in ministry Doing. The work that I do now with the coaching and the nonprofit is especially with the narcolepsy, because I got the Hashimoto's under control rather quickly but the narcolepsy I realized how much chronic illness is mental health, because I did especially. This was before the diagnosis, when I did not know what was going on and didn't feel comfortable telling anyone because I didn't think that they would understand. And how can they understand when I didn't understand and I didn't want to be told that, oh, just get more sleep, you do too much. No, no, no, no, no, doctor, daddy, family. 33:52 I was in college, married, divorced, with two kids, working full time, getting my master's. I know what tired is. This is different. This is not. This is different and you're not gonna gaslight me into into thinking that it's something that is not this. I'm falling asleep at atms. 34:13 I have to leave work early from downtown because I'm not going to be able to sit in traffic. I can do 10 and 2 in 30 minutes or a straight shot, but after that 30 minutes in Houston traffic, the fourth largest city in the world. If I don't leave downtown at a certain time with my job, then that starts to impact my job and then, because of the type of work that I was doing, that would have me all over the city. Sometimes, if they had, you know, and not just going to the building downtown 30 minutes, I may have to drive to the outskirts of Houston and that's over an hour drive. I couldn't do that. 34:52 A mental toll of even when I do have it under control, am I still going to be able to do the same job that I was doing before? And the answer was no, especially because the job that I had was one of the most boring jobs that you could have ever had in the world. And even my employees and other people in the office I passed by them. They had no narcolepsy. They'd be knocked out at their desk trying to read case law and tax code. Imagine being in a room alone all day, or at your office in a cubicle alone and you're reading tax code and contract and law and those thick books, trying to stay awake. Then sometimes I couldn't even eat. If I ate it was gonna be head down in the keyboard and then people walking by judging you yeah look at her over there can't even do her job. 35:43 That was an amount of stress and anxiety. It had gotten to the point curly at one point when we were going through covid and quarantine before I stopped doing that particular job. I got leave from that job. That I would walk from my bedroom to my office and hyperventilate had never happened before. Because and again that type a personality in the back of my mind. Once I figure out what it is, I'm gonna be able to fix it. But in the meantime, every day I'm struggling, repeating doing the same stuff because I didn't comprehend it from the day before. I'm trying to do these reports. I'm struggling, repeating doing the same stuff because I didn't comprehend it from the day before. I'm trying to do these reports. I'm trying to keep statutes together. I'm trying to read case law stuff. That's new. 36:26 It wasn't as though I had a job where it was repetitive. It was something new every time. I had a different case, different facts. I had to remember different law I had to learn. So it became difficult and at one point it was so bad. Had to learn, so it became difficult, and at one point it was so bad, even with medication, because I was struggling to find the right one. I could not even do my timesheet without crying because I was just that exhausted. My timesheet could not be done and luckily I had built a relationship with the secretary and he cut me some slack on the time because it would take me that long just to fill in my time. But that was stress on top of stress, so it was like a cycle of making everything worse and stress makes narcolepsy symptoms worse very much so and autoimmune symptoms very worse. 37:16 so it was a double whammy with that. But at the end of the day, as I was the work that I do now with the nonprofit and helping the underserved communities how I justify that again you know, woman of faith, of stuff going on, but I had good government insurance so I was able to afford it. In between I didn't even I didn't even get into everything. I had a lot of joint issues, mris, knee surgery, sprained ankles and even after the narcolepsy diagnosis last year I got another diagnosis of RA, even though there's an impact on my joints as much as others. I had to have double shoulder surgery last August and last November. But for me again, turning the test into a testimony, trying to look on the bright side if I didn't have that job, if I didn't have the government insurance, I wouldn't have been able to follow up with the doctors as much as I did. I wouldn't be able to afford the medications that I have to take. I think about in the back of my mind those people who can't do that, who are suffering, those who are like me and are oblivious to what narcolepsy is educate, underserved population or not. I was middle class and I was like narcolepsy, what are you talking about? So imagine people who don't have access to resources, information, education, money to advocate for themselves at the doctor. I kept going back to the doctor. I was like we're going to figure out what this is, because obviously it's not that and I'm not crazy. I'm lucky enough to have a doctor who listened to me and didn't stereotype me and just say, oh, you need to lose weight. I didn't, but it wasn't because of stuff that I was doing, things that I was doing on my end. I was drinking the green smoothies. My calories in were missing, my calories out. I was teaching classes, I was running on the weekends. It wasn't that. So we needed to figure out what it was. 39:10 Even though my life didn't turn out the way that I expected, I am making the most of it, in spite of the chronic illnesses that I have, in spite of narcolepsy. The most of it in spite of the chronic illnesses that I have, in spite of narcolepsy, in hopes of helping others remove the barriers that they have and some of the barriers that I have, get a diagnosis quicker, get the resources that they need to get more people who look like us at the clinical trial so we can find the right medication that works for us. From Jump Street to go advocate on Capitol Hill. So we don't have to go through step therapy and the insurance companies dictate which medicines that we have to go through first. Because imagine if I had gotten a medication that worked earlier, I may have been able to stay on my job, but over a year where I'm going through different medications because that was what was required by the insurance company instead of what the doctor thought was best. So things like that we can do without using our voices. 40:05 To advocate for others is so important, including having shows like this, so people who look like us can understand that we get narcolepsy too, and you know. Learn what the signs and the symptoms are so they can bring it to their doctor earlier. Learn what the signs and the symptoms are so they can bring it to their doctor earlier. Research so they can find a community of people who can help support them when they, like me, feel as though nobody would understand what they were going through. That makes the world of difference 100. 40:32 - Kerly (Host) Yeah, I totally agree with that. Yeah, community really helps. I remember when I was diagnosed there wasn't a lot of community out there and when I was diagnosed google didn't even exist. So we didn't even know what narcolepsy was. We just we've got technologists, got a piece of paper and it was like, okay, and let's research and what see what this is. And because America is a continent and England's an island, like there was lots happening in America, so most of the people that were on Facebook and stuff when that finally came out and stuff were people in America who were telling their stories and sharing their experiences. And that was nice to find that community. Just that it took so long for the community in England to be to actually start to speak up and people to share their experiences so yeah. 41:24 I it, I, I found it. I found someone very early who had narcolepsy and was willing to speak to me and she lives in Manchester and it it changed my life. And she, I didn't know her that long, maybe two months and she invited me to her wedding and just seeing her in person and I saw myself and for the first time, watching what you go through all the time. But seeing someone else do it right in front of you, that's me, that's me having cataplexy, that's me. It's just shocking. But you're just watching it in someone else, someone that can finish your sentences for you and everything, and they know what you're feeling, what you're thinking. It really, really helped so yeah. 42:11 I do this to push for, because I believe everyone needs a person that has the same illness as them that they can go to. And then, even if you have been fortunate, like myself, to have a very supportive family, I'm so grateful for that because I hear so many stories of people on the forums all the time who they don't have support from their families or their spouses and stuff, and it's really sad. But I'm so grateful to have God and also to have a very supportive family, because that's really helped me a huge deal in managing this. 42:48 - Jamie (Guest) Yeah, that's so awesome and even here we have a lot of groups. But even having groups of people who look like you like I've been in several different and we have a lot of them here in the US but no, and whether they look like you or not, I'm just saying it's a sense of comfort because there are certain cultural nuances? 43:07 - Kerly (Host) Yeah, no, definitely. I've been to conferences and I can count on one hand the amount of brown people, To the point where I begin to wonder what happened to them. 43:25 - Jamie (Guest) Yeah, I've attended more than a few conferences like that and, again, that's also why I kind of delved into the the non-profit it wasn't supposed to be a non-profit at all. As a part, just quickly, when we were going through here with with George Floyd and with COVID, a lot of the I will say non-BIPOC white influencers that I was following about health began to say some things online that were very disturbing. As far as you know, the reason we were getting sick Black and Brown people were getting sick was our own fault, because and I literally saw a lady with a basket in Whole Foods it's one of the most expensive grocery stores we have here because you don't eat correctly and I'm like it's always a choice we have deserts. You have people who don't have the income to do so and they have to be able to feed their family as best they can. There's a number of other things. We call them the social determinants of health or non-medical factors. And then the other thing that I was seeing is that, because everything was shifting online and people were doing summits, you have their picture on the advertisement and I would look hard Curly and I didn't see one person who looked like me, and I'm not just saying a black person. I'm trying to get some answers and I'm looking online and I see no one who looks like me. I may not be inclined to go to that particular person because I think that it's two totally different worlds. 44:48 A long story short, I had to put my money where my mouth is and I started doing these autoimmune disease roundtables once a month, and we still do them, and only I did that. I didn't want to do that because at that time, I had my symptoms under control and my daughter was graduating and I was going to be an empty nester and I was like, oh, it's time for me to turn up. The last 20 years I've been asleep. I have not even been on vacation. It's time to party. And he said no, jamie, remember, remember all those times you woke up every morning and you were praying for you to figure out what disease and me to deliver you from it? I said, yeah, I remember. I remember I did say that that's what I said. He was like OK, this is what you need to do. I was like, well, ok. 45:45 And so that turned into forming an online community on the Mighty Networks for the BIPOC community, where we have resources on everything, including, you know, sleep, gut health, stress, autoimmune diseases and, you know, trying to build a community of people who understand and can help each other navigate the process of chronic illness, whether it be autoimmune disease or an orthorexia, so I'm very proud of that. 45:57 Whether it be autoimmune disease or narcolepsy, so I'm very proud of that. And then that skyrocketed into us doing a big event here in Houston for the community, focusing on underserved community, and we're planning on doing it again next year. So I'm just excited to be able to again use all the bad times and the stress and anxiety and depression and the panic attacks and all of that that I went through to turn a negative into a positive on the bright side and kind of. You know, it's become my passion and my purpose. So I think a lot of the things, even the most recent diagnosis, that that set me back, cause I'm like Lord again. It caused me to have a different set of experiences and a different set of feelings that I can now minister to someone better, because I went through it myself yes and I got over it. 46:43 So it's, it's some, it's, it's a blessing in disguise. Sometimes it doesn't feel like it when you're going through it at all. 46:49 - Kerly (Host) I like to tell people that God just didn't heal everybody. Some people uses you through your sickness to bless so many people and he better can use you this way than if you didn't have the illnesses. And I've. I've had that happen to me so many times when I had corneal transplant from keratoconus and I almost went blind and um, and then maybe four or five years later I went to church, met this. 47:24 This lady and her sister had double corneal transplant, was struggling. I said how weird is that like? What a small world that you know that I would go to this church and meet this woman whose sister was struggling from the same disease that I had. And when I spoke to her sister she was so, so grateful because she hadn't met anybody else who had had it and just to release all the feelings that she was having and be validated because someone else had had exactly the same experience and could understand why she might be seeming antisocial or not wanting to go out. Her eyes are healing and it's different, like cornea transplant. It's a big thing to get over. I only had to have it on one eye. I can't imagine to have had it on both and what you know just trying to get back to normal and see again and all of that and the pain that it causes, and trying to explain that to someone who doesn't really understand. 48:22 - Jamie (Guest) I'm glad you're finding your community there as well. Hopefully it'll grow. I've heard a couple of things, even in the autoimmune world, specifically in France, that there's not a lot of resources. I see over time, more and more autoimmune disease and different diseases are getting more resources as to solve them. Um forgot the name of the lady, but I think she was an AIP coach who um just wrote a book. So, as again, it's important to spread the word um so you can connect and find resources. So it's wonderful that you're doing this series thank you well. 48:55 - Kerly (Host) Thanks for coming on, jamie, and sharing your story. I wanted to ask you one more thing to do with your diet. What's one of the things you think really helped your narcolepsy, specifically? 49:12 - Jamie (Guest) specifically because again I was, I was doing a few different things. But the low carb, but again I won't just say that, blanket it for everybody the madcap keto, and again I didn't, um, I didn't follow keto specifically, I didn't track specifically and I didn't do like you would see with a normal, I guess, dirty keto diet with bacon and eggs and all that I focused on like green smoothies, um, that I was already drinking and I would add in some healthy fats, some coconut oils or, you know, tiger nut butter. But when I first, you know, did a deep dive, I did that in conjunction with entire elimination on the autoimmune protocol, which kind of eliminates all these list of triggering foods from like gluten, wheat, dairy, and then got my body back to a state of, you know, somewhat calm, low inflammation and then gradually added a food back in to see what triggered me. So I know, yeah, and a lot of people and that's another thing that we're educating on I was just out at a health fair yesterday A lot of people I see online are getting misinformation and doing it wrong. They think that you eliminate all of those foods forever and that's not the case. Everybody has different triggers and there are over 100 different autoimmune diseases and even within the autoimmune disease, people react differently to food. So I might not be fine with dairy, but I'm fine with some wheat sometimes, just as an example. 50:35 So finding your trigger is important and then making sure that you add those other foods back in because, although they can be inflammatory to some people, they also are very nutrient dense and you need nutrients in your body, especially with chronic illness, to prevent chronic illness, and people sometimes don't realize the importance of not just taking out the bad stuff but adding the good stuff back in. So I did a lot of adding in of different foods that I hadn't been eating, including, like you know, organ meats. I know people are against that sometimes when they do vegan or vegetarian, but more veggies are bad for me, oddly, than meat. Example for you know, thyroid. Everything has to be, or should be not raw, especially the raw cruciferous vegetables, because that impacts your thyroid. You think the things that are healthy for you or healthy in general are good for everybody, but it's all very relative and it's very bio individual. So I never recommend just saying, oh, just go online and follow this because you saw your friend do it. It doesn't work like that. 51:33 If things worked like they were supposed to, then the calories in versus the calories out would work, and that's not how it works. If that was the case, then people wouldn't talk about metabolism. Oh, you must have a fast metabolism. What does it matter if it's only calories in versus calories out? If I have a fast metabolism or slow metabolism, I'm eating fewer calories, but I'm still bigger than twice as big as a person. That's more than me. So obviously that's not the case. I know that it's a factor, but if you're doing that and you're not losing weight, you have to. You have to understand that there's a root cause that you're not getting to. So, but those things have worked for me. I've found what's been easy for me. I'm a foodie, so I just found things to replace it. So I still eat hamburgers, I still eat hot dogs I make them myself. I eat cauliflower bread instead of regular bread. I don't eat gluten, but I eat good and plenty, and for me it's not a diet at all. 52:30 At this point I don't feel deprived, I don't stress out over food. I don't count calories. The only time I've really tried to count calories and it wasn't even calories, it was like protein is when I was starting to have a personal trainer Because, again, I didn't even get into all the joint issues that I had. I was just trying to make my body stronger so it would quit breaking, and so, in order to do that, I had to make sure that I had enough protein. So that was the only time I really counted it, and then I didn't even count that for long. So that was the only time I really counted it, and then I didn't even count that for long. I'm like this is for the birds, old school cook. I just throw stuff in the pot, doing specific measurements. But again, I still lost 60 pounds without counting calories. I just, you know, worked out and did what I love and found a way of eating that worked for me, that didn't seem like a diet at all and also made me good. 53:19 A lot of people don't realize that the diets that they're on at some point in time came from treating a specific illness. They just happen to cause you to lose weight. The people who have those illnesses like for me. I know how it is when I eat those foods and how I feel versus when I don't, and I don't want to feel like that. So it doesn't seem like a diet. It isn't like I would rather eat that than feel like the crap I felt like when I wanted, like I can't. It's the difference between functioning and not being able to function, not being skinny versus being overweight. It wasn't like the best way I could optimally in spite of my autoimmune disease. 54:02 - Kerly (Host) It's a total lifestyle for me. So this brings me to our last question. If there was a red button and you could press the red button and get rid of narcolepsy, would you press it, and why? 54:13 - Jamie (Guest) Would I get rid of narcolepsy? That is an interesting question. The easy answer would be yes, right Overall. I would say, because of the detriment that it did to me and it did to others, that if I had the opportunity not to have it I would say yes. However, the experiences that I have gone through, the character that it has built in me, the resilience that I have because of it, I know that there's really not too much of anything that could come my way that I couldn't face, Because the way that narcolepsy impacted me entirely, not just physically, both mentally and emotionally, it takes a certain character and it takes a certain strength to get through that. So I think, in that regard, I don't regret it. Do I wish I didn't have to have it? Of course, do I regret what I? 55:18 - Kerly (Host) went through. Regret it Do. 55:18 - Jamie (Guest) I wish I've had it but didn't have to have it Of course. Do I regret what I went through? No, because I know that my story is going to help so many others face not just narcolepsy but with any health issue that they have. The story carries over. You have to continue to advocate for yourself. 55:35 My thing has always been especially when I first was diagnosed, I was a little bit younger. If I want my years ahead of me to be greater than my years behind me, what do I need to do? And if I do nothing, then I'm not going to get anywhere. So I have to continue to fight, and so my goal and what my heart is and what my purpose is is to give people even feel like fighting on their own is. And what my purpose is is to give people even feel like fighting on their own, even when they don't have the strength to fight on their own, to give them the motivation and encouragement and empowerment and education to be able to fight their way through it until they get the answers that they need, until they get the care that they need, until they get the protocol that they need to live optimally in spite of narcolepsy and any chronic illness that they may face in spite of narcolepsy and any kind of illness that they may face. 56:19 - Kerly (Host) Well said, I like that. I never thought of it that way before, but I really like that your years ahead can be better than your years previous. Yeah. 56:28 - Jamie (Guest) I would not be on this call with you right now. I would be knocked out somewhere. But yeah, my grandmother is 99 years old. Could you imagine going through all that hell in a short period of time and being like this is going to be my life for the rest of my life. That's not a life I want to live and that's not a life that anybody should have to live. But you can't get into the state of it's chronic. I'm always going to just it just runs in my family. Well, it could stop with you. You may have a predisposition to a certain kind of disease that runs in your family. That doesn't mean that you have to get it. And just because you get diagnosed with a chronic illness and you see everybody else on the internet not fighting and giving up and giving in, it doesn't mean that you have to, because there's so many others out there who have fought and can live their life optimally in spite of their disease 100%. 57:18 - Kerly (Host) Thank you, Jamie, for coming on. It was really lovely to hear your story and your nuggets of wisdom and I wish you all the best in your future endeavors and helping people and making an impact in the community. 57:33 - Jamie (Guest) Thank you so much for having me. It was awesome being able to talk to you and share my story. 57:37 - Kerly (Host) That's right. So we usually say at the end happy napping to everyone. So happy napping everyone. Views and opinions in these stories may not work for everyone. If anything you have heard is relatable, please see a doctor for advice. Thank you for spending time here with us at narcolepsy navigators. I hope you learned something new. Please share the podcast with others. You can find us on all platforms. See you next time when we delve into another person's story.