Episode Transcript
00:10 - Kerly (Host)
Hello, welcome. You're listening to seasons one 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. 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. Hello everyone. Welcome to Narcolepsy Navigators. My name is Kelly, your host,
00:47 - Liz (Co-host)
and I'm Liz, your co-host for today. Today we're joined by Sarah, and Sarah lives in the US.
00:54 - Kerly (Host)
Hi, sarah how are you,
00:55 - Sara (Guest)
Hello? Thank you so much for having me. I'm really excited to be here.
00:59 - Kerly (Host)
Thank you, so how was your week?
01:01 - Sara (Guest)
It's been a nice week. It's finally getting some sun where I live in the US, and so everyone's just running outside as fast as they can to soak up the sun. And we have this joke at the house that we just stand outside with our arms out and say photosynthesize and just hope that it soaks right in. So we've been doing a lot of that.
01:20 - Kerly (Host)
And Liz, how was your week?
01:21 - Liz (Co-host)
My week was good. I've had a couple of days off over the weekend, so that's been really nice, and yeah, also it's been sunny here, which has been a nice surprise, so I've been outside getting some fresh air, sitting and reading in the park, which fills my soul with joy, so I'm feeling a bit more refreshed and, yeah, very happy to have some vitamin D. How was your week, carolee?
01:47 - Kerly (Host)
Going back to college this week, which I don't actually feel ready for. I felt that the week went so fast and I just needed maybe five days more, but that's not the case. So I reckon this week is going to be a real push, because it doesn't actually feel like I had two weeks off. So so it's going to be a push this week, I'm sure, but apart from that it's been okay. So, sarah, can you introduce yourself, tell everybody who you are, what state you're residing in, your age, if you feel comfortable, and what year were you diagnosed?
02:19 - Sara (Guest)
Absolutely. My name is Sarah Duncan and I live in Oregon and for those of you who are unfamiliar with the states, that's on the West Coast. It's the state between California and Washington. I'm 29 years old and I was diagnosed when I was 23. So that was just out of college. Oh gosh, that was like 2015,. I believe I was very much coming out of college and thought I knew exactly what I was going to do with my life, and boy did that upend things. I knew my whole life. I wanted to be a doctor. I was like certain from age 12. I know a lot of people don't do that, but I was a little bit of an intense 12 year old.
02:55
And I thought I wanted to save the world. So I started looking into what it takes to become a doctor in the US from a very young age. And boy, it takes a lot to become a doctor in the US from a very young age, and so I entered university for a four-year degree, pre-med, and there are extra requirements, and at this time in my life I was going to school full-time, I was working a job, so I was doing something seven days a week. There was not a single day in my life that didn't have a commitment. I was volunteering in the emergency rooms in Portland, oregon, which is our largest city, and I didn't think much of my lack of energy other than well, obviously I'm doing more things than is advisable, so that must be why I have trouble staying awake sometimes. That must be why I struggle to get through more than two pages of my textbook at a time. That must be why I'm getting heart palpitations from how much coffee I'm drinking. Anyway, I was very lucky to have a lot of friends who were happy to point out to me that falling asleep on my pancakes at brunch was not a normal behavior, and I was very appreciative of them for doing that, because after enough poking and prodding from people around me, I decided to at least go ask my primary care about a sleep study.
04:10
I don't know much about medicine in the UK, but medicine in the US is notorious for kind of just brushing off anything that you bring as depression or anxiety, especially when you're a woman. And so I went to my primary care from college. I wasn't. I didn't know care from college. I wasn't. I didn't know her very long, I hadn't had her very long, we weren't particularly close. And so when I went to her and I'm this very bubbly personality, I'm a very energetic person, and so the thought of somebody like me having a sleep disorder kind of breaks a lot of norms. So I go in and she hands me a green piece of paper I remember this so clearly and it was like a 10 question questionnaire that they give everybody and it was clearly a screening for depression. And I, you know, I fill it out, and if you think about narcolepsy, a lot of the symptoms overlap with depression, and so things like feeling tired and not being able to get out of bed or getting enjoyment out of the things that you like to do easily could show up as depression. And so I'm, you know, I fill in my little bubbles and I kind of put it to the side and she comes in and she basically immediately tells me I have anxiety and I'm like, well, okay, yeah, I'm a female in the United States, I have anxiety, of course. And then she says that she also thinks that I have depression and she'd love to start me on meds. For that, off of my 10 question questionnaire, she asked not a single question about my lifestyle or my exercise routine, the food, nothing. Wow, one question questionnaire was enough for her to want to start me on depression meds in that moment.
05:43
And luckily I'm a bit of a confrontational person and I was pre-med and so I'd been studying the U S medical system for a long time and I spent a lot of time in the U S medical system and I was like, okay, I'm not, I'm not going to just take what this doctor is telling me. And I said I appreciate that I would like a sleep study and we kind of talked a little bit about what a sleep study could, could even procure for me and we talked a little bit about sleep apnea and that didn't check out for me and so pretty much my doctor was like, if anything, maybe idiopathic hypersomnia maybe, but nothing close to narcolepsy and she kind of begrudgingly ordered me a sleep study after I and the word if you live in the US, if they want to deny you anything you say, can you put in my chart that I asked for this procedure? And you said no, if you ask for those things, they will almost always at least move you on to the next round. And so I said I don't think I have depression. Before I start on depression meds, I would like to request a sleep study. On record is specifically what I said and that's when they agreed to give me the sleep study.
06:51
And at 23, that's pretty young, at least in my experience, like in the U S, for trying to get a diagnosis like this. If you are successful at that age, that seems to be out of the norm. It usually takes significantly longer to find something like that. So I went into the sleep study kind of thinking, okay, I did a bunch of Googling on idiopathic hypersomnia, thinking like, okay, like this checks out not perfectly, but like you know, I'm, you know, having these issues. I really still am kind of chalking it up to working too much. But I'm like, whatever my friends think I should do this, I'm going to do this.
07:22
And I remember going to the study and you know they hooked me up to a million wires. For those of you that have gone through it, it's wild. They hook you up on everything and in the US they have to, no matter what, test you for sleep apnea first. It's like an insurance thing because so many people have sleep apnea, and so basically you have to clear the requirement for sleep apnea before they'll move on with your study. And I cleared sleep apnea. I don't have sleep apnea, but I do know people who have sleep apnea and then they stop the study after that and they don't go forward and tell me anything with sleep apnea. I have relatives that this has happened to that you know there are genetic links to narcolepsy. So in my mind I'm like, oh, I hope, I hope you go forward for past this someday.
08:06
But I was very lucky to clear that period and then I was asked to take five naps throughout the day. I thought this was the coolest day ever. I'm like I get to sit in a room where people are going to bring me food and watch cartoons, sleep on and off all day long. Sounds like heaven. I just wish I could take the wires off. So luckily the hospital is that had good food, and after nap number four and I'm thinking like I'm not falling asleep in these at all Like they close, they wipe off and then it's like you know, I sit there for a little bit and I wake back up and you know this isn't going to be a big deal After the fourth nap they told me I didn't need to do nap number five, I could just go home, which I thought was a little weird. But I was like, okay, cool, they got. They got everything they needed and they said they'd call me back in. I think they said four to six weeks. I would hear back from them.
08:52
I got a call the next day, which was unexpected, and they said that I've tested positive for narcolepsy. They did not give me a type. I to this day have not officially received a type diagnosis and they wanted to start me on meds immediately. They did not call me back into the office to do additional testing. They did not ask me any questions about anything. They just said you tested positive for narcolepsy. We're going to put an order in for this black label intense medication right now you can go get it tomorrow, and that was it. There was no follow-up appointment scheduled. I never even heard from my primary care again After that. I was fully just kind of left out to dry Google and so not even a piece of paper, a little leaflet, nothing.
09:37 - Kerly (Host)
How do you not sit down with someone after diagnosis and explain to them what the illness is, what it entails? I don't care if there's google now and there wasn't google. When I got diagnosed, there was no people. What, yeah? And talk to them about what the medication is that you're giving to them, how they're supposed to be taking it, what side effects medication is going to have I'm gonna say also just a debrief as well.
09:59 - Liz (Co-host)
like you've been through this process, you've received a life life changing diagnosis that's not curable and going to be with you forever, so you think that would warrant some kind of discussion after that, even just a five minute phone call to check in, absolutely.
10:15 - Sara (Guest)
And the unfortunate thing is I worked at this hospital. I actually really liked this hospital, and for a lot of reasons, and so for me to suddenly have like such a kind of jarring, disjointed experience and this is pretty typical, unfortunately, of American medicine I dove into the disability world with vigor, and I am not the only person in my immediate friend group turns out to even have narcolepsy. My best friend and I both have narcolepsy. She did not know until years later, because she had so many other things going on, that her narcolepsy symptoms were a drop in the bucket. We eventually got matching spoon tattoos. It's hard to tell, but I have a spoon tattoo on my arm and her and I both have matching tattoos now. But I really dove in and I realized that this is not an uncommon experience. If you do not coordinate your own medical care in the US, no one else is going to coordinate it for you, no matter how much they say your primary care should or your advocate should. At the end of the day, the only person who's going to take all of the pieces of the puzzle and turn it into a full picture is you Anybody who's had a different experience. I'm so glad for you, but I've met very few people who have been able to have that.
11:23
So I, thankfully, was a biology major and I was so interested in medicine so I knew how to do Googling a little bit better than the average person and I started reading articles voraciously and looking into any personal accounts I could get to. At the time that was a bit harder. We didn't have like TikTok so much and there weren't a lot of people talking about narcolepsy experiences. A lot of what I was reading was very discouraging. It was people talking about how they got put on meds like mine just stimulants and that they became significantly less effective every year. They used them until they basically weren't helpful anymore. And then they run through every stimulant on the market and I'm literally in the middle of medical school prep classes at this point and I'm going. Medical school in the US is no joke.
12:08
They are legally allowed to work you for so many hours in a row. I have friends that are in medical school right now and it's kind of at the point where different schools have different rules. But at the time I don't remember what the legislation was. But there was a piece of legislation being debated where I lived and they were specifically talking about putting limits on how long doctors could work in the hospital, like at a time because doctors were being put on call for like 48 hour periods where they were literally sleeping at the hospital. And I was thinking you know, I, I don't, I want to be a primary care, I just want to work in a clinic. So it wouldn't affect me if I could get to that point.
12:43
But I was so scared of the four years of medical school and then the two to six years of residency I was going to have to do where I would not have control over my environment, and I remember listening to the local radio talking about this legislation and they finally got to the end of it and the legislation passed. But in order to pass it, the compromise they made was that it would not extend to resident students, so it would only apply to doctors, and I remember just breaking down crying in that moment, cause I in that moment I knew that no longer this path had been working towards since I was 12 was no longer accessible to me. I was not going to be able to be a doctor with the way that my disability was. Even with the meds I was on, I was like the amount of medication I would have to put myself through in order to comfortably do this was not an amount I was comfortable doing at the age I was at, with all of the side effects and you know, medication is also imperfect. It doesn't take away your disability, it's just a tool in the toolbox.
13:40
And it still took time from that moment where I really think of as that pivotal moment, where I realized my life was going to be profoundly different, and when I started actually making those changes in my life, like pulling out of MCAT classes that I'd sunk thousands of dollars into and stopping looking at schools and not choosing to miss application deadlines and not put in applications, like that was.
14:04
Those were really intense things for me, um, especially like I was 23 and my degree in biology and the United States is pretty much useless unless you go on to secondary education, and I didn't really know that and I didn't really matter to me when I enrolled, cause I was so certain that I was going to go on to sec, like to a master's or a doctorate program, that it didn't really matter that there wasn't a lot of biology degree classes or jobs, until suddenly I'm looking for jobs with a biology degree and nothing else. It was definitely jarring, but I I pretty early on I decided that this was not going to be the path I wanted. I'm not going to just accept these kind of intense black label medications that my insurance fights me on every month and that I can't have much of a career. I was like, no, that's, that's not the future I'm willing to accept.
14:53
And I started doing some kind of crazy research and some kind of crazy things. But I see you guys have a question, so I'm going to. I'm going to pause because I have a tendency to talk without stopping.
15:01 - Liz (Co-host)
So good to hear your story, though. Yeah, I'm amazed by what you went through, and the question I wanted to ask was was there any reasonable adjustments that they could have put in place to support you to go into the career that you wanted?
15:19 - Sara (Guest)
Yeah, absolutely. There is a doctor shortage in the States to the point that I'm reading a new article about it every day. There is absolutely accommodations that they could put in place. I just do not see them doing them because it would cause them to need to alter their programming. Resident don't have great caps on how many hours they're allowed to work you or, quite frankly, how much money that they pay you also. So I have friends that are in residency programs now and they are working, I think most recently my friend who's in school. I'm trying to remember. Her and her husband are both in medical school at the same time. They have different requirements, so the caps on how many hours they can work are different. I believe she can't have longer than a 10 hour day and he can't have longer than a 12 hour day. But that's like how many hours do you have left to then eat dinner and go to bed at that point and then return the next day? Not to mention, not many medical facilities are set up for you to be able to stop and take breaks and take naps when you need to. I know many doctors that were through their lunch breaks or get called away on their lunch breaks, they still have to be on call to have the beeper on them. Same thing with the medical schools.
16:33
At the time, I didn't, and this was, I think, why I wanted the topic of coming to terms with your disability, because I didn't know what to ask for. You don't. Nobody prepares you to know how to suddenly be disabled. Especially in the States, very much. Disability is not treated like a condition that will inevitably happen to you, although that is the reality we all. Time is linear, it goes in one direction and you are lucky to have your health as long as you have it, but inevitably, like, we all become old, and being old is disabling in and of itself. There are very few that escape that, and so for us it's very much seen as this there's definitely like an othering of people that have disabilities, and so the thought is that people that are disabled won't become doctors. They don't make thought, there's no thought for it, there's no accommodation for it. I see it, I'm getting, I'm getting, I'm getting nods, and so I mean, like our universities are, many of them are not ADA accessible, especially if they're historical buildings and they get to opt out of adding ADA accommodations. I had a friend who couldn't even get into some of her classes because they were in historical buildings on upper floors, things like that. And so medical is pretty much the same. I don't know what to ask for and with a school that is going to gatekeep as much as possible, any accommodation I could have.
17:56
I was running into it already with my undergraduate program, like I was starting to try to ask for things and cause I'd gotten the anxiety diagnosis, no problem, and I was like, okay, what can I ask for? And I was like, well, I really need music. And I didn't know I had narcolepsy yet and I was thinking, oh, the music helps me focus. I did not realize the music was keeping me awake because I wanted really loud music. And they just kind of stared at me and they're like I don't know how to? No one's ever asked for music as an accommodation. Don't you just want a quiet room? I quiet room is sleeping in my brain, and so I had to really work with them to come up with something.
18:30
And the disability center was great, but some of the teachers I had were not. I had a teacher that, specifically, I remember having to. I had to report him two different times for trying to give me and another student who used the disability center less time to do our test corrections than every other student. He's like oh I forgot to pick up your tests, but that's not really my problem, so you need to turn them in at the same time as everyone else, even though I'm not going to get them to you for two more days. And I say you can't do that. That's not legal and that was just at an undergraduate level.
18:56
And so thinking about the amount of advocacy I was going to have to do for a thing that I didn't fully understand yet was insurmountable.
19:03 - Kerly (Host)
Yeah, that is a lot of pressure.
19:09 - Sara (Guest)
You don't. You don't know how to navigate it yet, Don't even know what accommodations are available. It's something I talk about with friends all the time. We've thought about going to secondary school and they're like, oh, but you know, I'm too disabled and I'm like, well, well, have you thought about asking for a note taker? You know they have people that will take the notes for you and I've had people's jaws drop and they say you can do that and I'm like, yeah, you can, but they don't tell you there's no list you can flip through or available to help you. It's like they try to keep it from you. You have to justify it every time why you need it, which is just insane to me.
19:37 - Liz (Co-host)
I had a very similar experience at university. So I studied as a speech and language therapist when I was 18 and I was diagnosed a week before I went to uni. So it took a while for, like the uni, to kind of, I guess, process my diagnosis and work out how they could support me. But it was so bad like they just they never spoke about reasonable adjustments. They said that they no placement, no workplace would ever be able to provide me with anywhere to nap, which is just not true. Now I'm in the real world. Every job I've ever had has provided me with somewhere to nap.
20:11
They never talked about reasonable adjustments being a legal requirement in the workplace. They actually tried to get rid of me off the course because I had narcolepsy and they asked me such stupid questions like oh well, what happens if you just fall asleep on a patient? And I was like I would never just fall asleep on a patient like that's not how it works, that's not how that works. And I think when you're that age, whether you're 18, early 20s or even if you're just new to having a diagnosis of some kind of disability, like you said, you just don't know what to ask. Like you don't know what your rights are, you don't know what support is out there, and if people aren't educating you, it's very hard to get those answers. Incredibly hard.
20:56 - Kerly (Host)
Yeah, 100%.
21:00 - Liz (Co-host)
And so when did your symptoms start?
21:03 - Sara (Guest)
I can remember having my, so I have narcolepsy with cataplexy. I always say it that way just because it's slightly easier to understand for people that don't understand type one and type two Cataplexy. I can remember having my first cataplectic event at 12. So I definitely was dealing with symptoms all through school and that actually ended up being a good thing. I went to a private school and in the States, private schools are not subjected to quite as many rules, depending on how they get their funding, as public schools are, and my mom sat on the board for this private school and there was a period of time where they wanted to basically write into their their mission statement that they couldn't accommodate anyone with a disability, so they would not provide any disability accommodations. And thankfully, my mom is incredibly wonderful and vocal and a fantastic advocate and she was able to say well, you already, do you already have? Because you accommodated my daughter, she graduated from here. Do you already have? Because you accommodated my daughter, she graduated from here?
22:02
And it's true, I went there from seventh through 12th grade and I slept in many classes and I was. I would finish my work, I would put my head down, I'd nap until the teacher called on me, I would sit right up and I would answer, because I had the ability to do that and no one brought it up to my parents. Not a single teacher brought that up as a weird behavior, which I think is very interesting. So clearly. It was not disrupting class in any way, and I think it's because I was a good student with good grades. I definitely have pretty privilege.
22:31
I was conventionally attractive all through high school and I think that that helped a lot. I think if I'd been a weirdo kid, I absolutely would have been labeled as a problem, and so I think that that's to my advantage. I was involved in all the school activities. Nobody suspected me of doing drugs or something, which is what they would normally label somebody as. So I like to specifically highlight those things, because if I had been a slightly different person, I would not have had the same treatment, and so that's important to highlight here. There's a lot of intersectionality that goes into disability. I was able to get away with it. It was not even brought up to my parents as a problem, so clearly it was accommodatable.
23:05
I also found out a couple of years later I also had ADHD, and so clearly they were able to accommodate more than one disability, and so that was brought up and I don't think that they they ended up writing a statement that was a lot more accurate about the amount of services that they could offer Without having federal funding. They could not offer special SPED teachers and things like that, but it definitely made a very big impact on the teachers there and at one point my mom was like, if I need to ask you to go speak, will you go speak? And I was like, in a heartbeat, you know I will, and we ended up not needing that, but it was very informative for all of those people who remembered me to realize how very simple it was to accommodate me. It is just as simple as letting a student put their head down and rest when they need to.
23:50 - Liz (Co-host)
It doesn't happen more than that it's so true, doesn't even have to be a room to nap in specifically. I mean, that's helpful for some people, but for others it's like they can just put their head down, like you say, and just let that happen, and then they'll wake up 10 minutes later and be refreshed and ready to answer the questions. Um, it's so different for different people yeah, just don't.
24:12 - Kerly (Host)
Just don't touch them. That's what I tell people. I've gone back to college now and that's what I tell them. It's like if, like, if I don't look like I'm going to be in danger or I've heard a hit in my head or anything like that, just don't touch me. Don't touch me, don't wake me, leave me to it. I'll come back when it's finished. I'll just wake back up, naturally, just like how I fell asleep I'll wake back up Exactly.
24:36 - Sara (Guest)
I've been very lucky not to experience a lot of rage upon waking up, but I know that's not how everyone experiences narcolepsy. I have people that are close to me that do experience the rage and I've had it, so I've experienced it. It's a wild ride and I'm very fortunate that I do not experience that every time. But I do think my friends that have some like friends that also have PTSD, they almost always experience that rage as like a almost always not to say that you have to have that for to have that experience. But I've noticed that there's definitely a correlation there, at least among the people that I know it was interesting also that you said you got diagnosed with ADHD.
25:11 - Kerly (Host)
I find it is actually quite a lot of people who have narcolepsy that have ADHD. Very, very interesting.
25:16 - Sara (Guest)
Yeah, I've been trying to learn more about the correlation between sleep disorders and ADHD. I was able to get my hands on a doctor that was actually quite fabulous in the States. My parents, when I got my diagnosis, were like oh, we brought you to this different kind of woo-woo doctor from a different state when you were very little. I bet you're still in his system. We're going to take you back to that guy. It was an amazing experience. He's an amazing doctor. He's very unique in the States.
25:46
He was a doctor that has his MD, but he did his residency in Germany for homeopathy and uh, which is not a normal combination and also like very interesting, and so when I saw him, he ordered some crazy interesting tests that no other doctor has ordered for me since. He specifically tested all my hormone levels and I got my cortisol levels tested and it's amazing to me, I did not get my ADHD diagnosis from him, because I think all of the groundwork was there and he was much more interested in treating my cortisol levels than what I thought was. You know, I thought it was going in there for narcolepsy and he was so much more fixated on my anxiety and I still think about that to this day and finding that very interesting. But all of the supplements and things he gave me that were very helpful in my life were aimed at my cortisol levels and really healing. What I've now learned more is my parasympathetic system, and I would love to learn more about that and have more guidance in that, because that has been what's been the most helpful and of all the people that have been helpful and smart in my life, he seems to know the most and do the most. And, yeah, my cortisol levels were crazy high off the charts. He was like oh my gosh, your cortisol is going to give you a heart condition if you don't do something about it.
26:51
And a lot of the reading that I've done in relation to ADHD is certain symptoms that I've always attributed to narcolepsy I'm finding are probably ADHD related symptoms. When I wake up in the middle of the night, that could be considered a narcolepsy symptom, but since I wake up between two and three in the morning almost every night, that's also correlative to ADHD and cortisol dysregulation. So which is it? Is it chicken or the egg, you know? Um, still learning about that's very interesting about.
27:19 - Liz (Co-host)
You said about the parasympathetic system, and is that the fight or flight system that we have? Yeah, because I have a friend who has me which is chronic fatigue, and she said that there's some kind of research out there showing that that condition is related to always being in fight or flight a lot of the time. And I wonder if that is true for narcolepsy as well, where there's something around like that fatigue putting you in fight or flight or just that impact on your system. I'm not really sure how to explain it or if there's any information about that out there.
28:00 - Sara (Guest)
I don't know if there's anything specifically related to narcolepsy, but what I, what I will say and what I've understood is that, especially when I was first getting diagnosed there, they kept asking like if I'd had a traumatic event. Because many people experience a traumatic event that triggers their narcolepsy and I have a people experience a traumatic event that triggers their narcolepsy and I have a, unfortunately, very nice childhood, very healthy life, very loving parents, not a lot of controversy. Nothing really horrible, honestly, has ever happened to me. I haven't been in any major accidents. I've never broken a bone. I couldn't come up with anything to get them and so that was very. That was one of the main reasons they didn't think that I had narcolepsy.
28:38
I didn't have what was considered a triggering event to point back to and to this day I've never discovered something I can think of as what would have counted as a triggering event. Back to our fight or flight system and it being dysregulated or maybe turned on in a perpetual state in a way that is not normal or natural. Giving you that constant you know you need to run for your life chemical, which would make it very difficult to have a normal sleep routine. Somebody do more on the connection between the two and if there's any, any resources, you know I'll be watching, uh, your guys's comments and stuff to see if anybody drops anything for us.
29:20 - Kerly (Host)
So yeah, I think another thing is that I've heard people talk about is the endocrine, the endocrine system. Yeah, that they think that's very related to the narcolepsy, right?
29:34 - Sara (Guest)
yeah, well, it's. It's fun to talk about this. What what I ended up doing is? I knew I didn't want to be really heavily dependent on the black label medications, and so I, which is um in the states they they rank how dangerous meds are um depending on the label. And the modafinil, which is what I was prescribed um, was a black label medication and I was like, oh, too many side effects for somebody who's 23 to expect to be on this for the rest of my life. That doesn't. I don't want that forever.
30:03
And so I started looking for secondary options, and what I ended up kind of landing on I don't think was created for narcolepsy and definitely would not work for everyone, um, but was super effective for me is I started creating sensory triggers for myself, um, for sleep. So my thought was I need to teach my body when to be awake and when to be asleep more effectively, because it doesn't understand how to do that on its own. And so I went through my different senses and started to very systematically, like every night, habitually, create triggers. So I chose scent trigger, just lavender for me. I chose the scent trigger, which is lavender. For me.
30:42
I chose a visual trigger, so I put colored lighting in my bedroom so I could have pink or red light, which is more conducive to sleep. I started going to bed at the exact same time every single night, with the same bed routine, religiously, and then the one that I found to be the most helpful was a very hot bath right before bed, like I did everything I needed for bed, pajamas laid out, whatever, as hot as I can make it, because it tricks your body and it lowers your body temperature artificially to about the same temperature it is when you sleep. So if I get out of that very hot bath with that lavender in it to the pink lighting, and I put my pajamas on and I just stumbled into bed, I would fall asleep so fast and it was some of the best sleep I've ever had. And that was one of the things I did to start to train my body when was appropriate to be awake and when was appropriate to be asleep.
31:31 - Kerly (Host)
I've never heard of this before.
31:34 - Sara (Guest)
I don't know if there's any science to back this up.
31:36 - Kerly (Host)
Necessarily, it's never the time when I used to go to the gym when I was younger, I used to go to the gym in my 20s and they had this room that would emit light. It had different like they had the sauna, the steam room, and they had this room, yeah, and the lights would change and every time the lights change it had a scent and whenever it went, purple, lavender smell would come out the room and I would find any of the like any of the rooms the steam room, the sauna or that room very sleep triggering yeah, uh, lavender in particular is known for sleep properties, both uh, the scent and then also like if you ingest it.
32:16 - Sara (Guest)
So tea is a great way to ingest lavender. Oh, I also started creating my own teas. My favorite mix is, uh, chamomile and catnip and lavender and a little spearmint to make it sweet and, man, that stuff will knock you out. Well, you can have catnip, I don't know. Yes, uh, catnip for humans is quite the sedative not to be treated lightly.
32:37 - Liz (Co-host)
Yeah, and so what kind of medication and other strategies do you use to manage your symptoms at the moment?
32:46 - Sara (Guest)
Absolutely. It's gone on and off through, depending on how my life is, and honestly, the seasons play a really big role. When we get into the summer I have so much energy. My parents joke I go a little bit manic because I am awake when the sun is awake for the most part, and I'll have some pretty intense naps in the summer, but for the most part I am much more vibrant and I have just so much more energy. Come about October it starts to decline rapidly and I suddenly I always joke that in October I remember I'm disabled and so it really depends on the time of year. I'm at this point right now and I am very I've been very fortunate to be able to be very low.
33:25
Medication Medication is fantastic and it helps people and I'm absolutely a proponent of it. So don't take my experience as if it's experience that everyone experiences. But I, right now I have an Adderall prescription that functions for both my ADHD and my narcolepsy. I will take pretty much the lowest dose, maybe a little bit higher than that. I try not to do more than every other day because then I find it messes with my sleep a bit. But I'm quite sensitive to the medication and so I will take a short acting dose, um in the mornings and then I will often still um, smoke or do an edible of cannabis with my girlfriend in the afternoons, usually late in the day, when I'm done with everything I've done cooking I I've done everything because I will get sleepy very quickly.
34:06
But between those two things I do pretty well on my own. I have not been doing as much of my scent and my sensory training as I used to. I'll still do the very hot showers Now I don't need as much as I used to. I don't need the full bath necessarily, but I have noticed recently that my temperature regulation is significantly worse than it used to be, and I'm not sure what has caused that. But I'm at the point where my temperature dysregulation is the most disabling thing I'm dealing with right now. I'm freezing all of the time.
34:37 - Kerly (Host)
Yeah, it's just narcolepsy love, it's just narcolepsy kicking in. It has a beautiful way of just trickling the symptoms when it wants. Some people get everything full blown at the beginning. Some people just get one or two and they think that their life is going to be just this. One and two right remind them. That's not how narcolepsy works. It lets you have a nice period and then it trickles in a new one to just remind you that it's in control, and then a couple of years later it will trickle in a new one. You know that's how it works.
35:12 - Sara (Guest)
No, that's a really good way to put it. I like thinking of it that way. Thank you for that, because I do think that we get a little complacent with our disabilities and we think like, oh, we figured it out and that's not as you said. Said, that's just not the way that it works. And uh, I Allison was laughing at me the other day, that's my girlfriend I had a onesie on um to stay warm around the house and I shoved a heating pad inside the onesie and then I plugged in the heating pad and then was cooking in the kitchen while plugged in to fill in.
35:45 - Liz (Co-host)
Just roasting us all.
35:48 - Sara (Guest)
Absolutely, she's also disabled. We have very different disabilities, but I found that having a partner that's also disabled has been wonderfully validating and I understand why we often end up together, because no one gets it like someone else that deals with a disability all the time.
36:03 - Liz (Co-host)
It's so true. Yeah, it's so interesting that you brought up the temperature regulation, because I'm in a WhatsApp group with a couple of the women who have narcolepsy and one of them messaged me yesterday saying do you ever find that your temperature regulation is just way off? And I personally get hot flushes all the time, where I'll just like be sitting there and suddenly my cheeks are burning like I'm sweating, and that's even on days when I don't take the medication. I remember that always being the case for me. But then when I'm tired and I need to nap, I get the chills and I start getting really cold. So it's just so odd, isn't it, that narcolepsy can impact not only your temperature regulation, but someone else on the podcast recently said it can affect your like sexual appetite, I guess, or like that, and then also food as well.
36:54
So it's like we've got so many things going on that is just not being regulated that well in our heads and that's me.
37:02 - Kerly (Host)
That's the reason why I wish they would change it in the way they write it in the pamphlets, because they focus on yes, narcolepsy is disrupt sleep, it's, you know, your brain not able to regulate sleep. But no, narcolepsy is your brain not able to regulate sleep, not able to regulate temperature, not able to regulate appetite. Yes, that's what it does. It's not just about sleep.
37:26 - Sara (Guest)
It to me is a mirror of kind of how society treats disability as a whole, which is they label the part that affects people that are not disabled. They don't necessarily label the part that affects the person who is disabled. I find that with my ADHD quite a bit, but you'll see my ACE flag behind me. I was very surprised to find one of the symptoms of narcolepsy was hypersexuality.
37:49
I was like that is the opposite of what I experienced, but then I stepped back and thought about it for a minute and I was like, knowing how little research has been done with women over the years and knowing how people react to low libido, I'm going to guess that maybe this has not been recorded well and has not been studied well, because, at the end of the day, they're extremes and anything that I found with narcolepsy is that it lacks the ability to regulate, and so that could mean a dysregulation that is at a high level or a dysregulation that is at a very low level. And, knowing again how society acts when you talk about asexuality, I'm going to guess that the uh, the low libido was not necessarily recorded as a symptom of narcolepsy, but pretend potentially a character default of the person or something that that person was uncomfortable sharing at all yeah, yeah, that's so true.
38:43 - Kerly (Host)
yeah, because I haven't heard people talk about that a lot at all. Yeah, yeah.
38:48 - Liz (Co-host)
I've actually, it was the first time I heard it the other day on the podcast when our guest said about it, and, to be honest, that makes a lot of sense to me. I don't want to give too much away in a public forum, but sometimes I have my brain off Like it's just. You know, absolutely.
39:04 - Sara (Guest)
Yeah, me too. It definitely was a very big part of my life for a while, especially before I came out. I was with, I was in a straight relationship for a very long time before I figured out I was gay. And the process to figuring out I was queer started with this asexuality piece. When everybody defaults that you're straight and not asexual, when everybody defaults that you're straight and not asexual, realizing that you can separate the concept of sexual appetite and romance from each other was novel to me. I was like, wait, wait, I can separate these two things. Suddenly I thought about the entirety of the romantic experience completely differently.
39:46
But unpacking and figuring out the asexuality piece was incredibly liberating because I realized, if I take sex off the table entirely, wow, I really only want to date women. I didn't know I could do that. You can do that, great, and so, yeah, so I was able to find another ace partner and, yeah, and we're both disabled and I think a lot of our asexuality is connected back to our disabilities. And one of the things I love about the asexual community is they're so welcoming, they're so accepting. There is no gatekeeping. That happens here, and so I didn't. I, it was not a piece of my disability I really understood or thought was going to come into play, but definitely isn't talked about, because in those relationships that are so important to our lives, like romantic ones, this can be a huge factor in really impacting your quality of life and enjoying life with your significant other. So I think definitely there should be more about it, just simply because it can affect our lives.
40:29 - Liz (Co-host)
So sick. I'm curious about the link of whether you think narcolepsy plays a role in your asexuality.
40:36 - Sara (Guest)
Oh yeah, absolutely. I remember when I was sexually active I even would sometimes like about halfway through I'd be like can I just take a nap? Can I check out and nap? Now I'm like this was great and all, but I'm tired.
40:52
And you know, unfortunately for my partner that was a little bit of an ego, you know, a little shot to the heart like hey, I'm doing my best work here and you're falling asleep, and so I do know that there is that piece of it. But also just like I'm tired in the evenings, like when most people would be like getting ready to want to be spicy, I'm like getting my coziest pajamas on and I'm cold and I I often get this feeling I don't know if you guys do where my skin feels just so sensitive with the temperature dysregulation. It's almost it's. It's it's hard to say, it's not like it's necessarily that I don't want people to touch me, but it's almost like a pins and needles thing. I'm sure it's a circulation whatever, and that's not like a oh, I want lots of people to put themselves all over me right now.
41:36
And I definitely think that those things are connected to each other. And as far as like, just like libido in general it's so irregular, like. I think also that getting all the way to a satisfactory sexual experience is very hard, especially with the ADHD. Being able to focus all the way to the end is very important, and if there's one thing that's regular about ADHD is that it's irregular, and so having the ability to focus to the end and actually have an enjoyable experience doesn't exist for a lot of people. So I often say it sounds good on paper, but once we get to the point that that might be where the evening's going, I just don't actually want it to go further usually and I like to snuggle for a little bit and then fall asleep. Yeah, I do think it plays a role, absolutely.
42:21 - Liz (Co-host)
Napping is always priority. Let's be honest.
42:25 - Sara (Guest)
The most enjoyable thing I do is nap.
42:29 - Liz (Co-host)
Can you tell us about what the term disability means to you and how you feel like it shapes or adds to your identity? I love that question.
42:39 - Sara (Guest)
That's such a good question. To me, disability is an ever-evolving thing. And to me, disability is an ever evolving thing because at one point in my life I would have told you that it's the way that I interact with the world. In a lot of ways, it's the fact that the world is not created for people that are different than one kind of sort of streamlined version. But I don't think that's simply it, because I've thought about it around and around and I go okay, let's say the world was like perfectly created for me. Would I then, you know, not consider myself disabled? And I, I think I still would consider myself disabled.
43:16
Like I still have significantly less energy and the way that I operate, I, I am able to do less things than my peers, just period. I have some very high energy people in my life and the amount of things that they do in a week to me is absolutely insane. They just keep going, Like I just make them keep going and going, and I look at my calendar and I'm like, oh, I've got a commitment for weekends in a row. I'm gonna die like that, and they're doing three or four things on a weekend. So I think that what disability means to me is just simply it's an ever evolving definition of the way that I interact with the world around me and the way that they perceive me and who I, how I want to put my body first and accommodate what it is and what it needs, no matter what that is and that's such a silly definition, but that's that's how I embody that, and there was a second part to your question. What was the second part to your question?
44:05 - Liz (Co-host)
So how does it, how does having a disability shape or add to your identity?
44:11 - Sara (Guest)
I think all the time how fortunate I am to have my disability, which is such a funny thing to think. But I would not be who I am right now if I didn't have my disability, and the trajectory my life has taken has been nothing but a blessing, and I would have been a resident at the height of the COVID-19 pandemic if I'd continued going to medical school.
44:36
And when that happens and I watched my friends who did go into medicine dealing with that I was just so thankful that I was at home sewing masks instead and that I was volunteering at the distillery making hand sanitizer, and that was that was. I've never regretted not going to medical school. Actually, I think it was one of the best decisions I've ever made. I've never been jealous of the other people that did. Their lives are so much harder than mine. My life has been so much easier and it led me down a path of advocacy.
45:07
I work for a non-profit now. I do lots of advocacy work, both in disability and in other minority spaces. It gave me an understanding for being a minority at a level that I did not have. I found out I was queer later, but before that I was just a white woman. I was incredibly privileged and it is amazing how much you understand when it's personal, and I hate that. I don't think you should have to have a personal experience to be able to understand other people like that's super important to say here, but you do understand at a different level when it happens to you on a daily basis. There's just nothing that can compare to that, and so I have met people and brought people closer to me in my life and all of the things that have brought me to the kind of like the new, very amazing reality that I live are because I'm disabled and I like who I am better now than I was before and all of the things that I care about and have gotten myself into and the people I've been able to help are kind of what makes everything worth it. So if that means I need to slow down and take more naps, then I'll do it.
46:08
If it means that I have to search out jobs that will be accommodative, I will. I mean, it's what's led me to the job I have now, which means I get to work from home, like most of the time, and I work a 32 hour work week, which is my full time job, which is the dream. The four day work week I was able to find that for myself and not everybody is so fortunate. But I do attribute where I am in large part to my disability. There's a lot of downsides.
46:31
I'm not trying to make this sound like nice or glamorous or anything like that, because it super is not, but at the same time I'm very much willing to look at who I am and realize that I'm better for it, at least for me. And I don't want to come off glamorizing disability, because that's not where it is, but because I had been so privileged and I am so privileged and I have such a wonderful support system. That's what's led me to this place. I'm able to do this advocacy work, I'm able to work at a nonprofit, I'm able to do all of these other things. I sit on a board of directors in town for the transit agency, working on the, you know, advocating for transit and disability access. I wouldn't even know how much that was needed. I wouldn't have that knowledge unless I had my disability, and so I can't shut my eyes to all of the wonderful things in my life that are just purely there because of my narcolepsy yeah, yeah, right, yeah, well said, I totally get that.
47:21 - Kerly (Host)
It does open your eyes to to other things, like I. I I had a real love for the for deaf people and I think that came from become having narcolepsy and I just felt the language was just so beautiful and nowadays you can see braille on medication, but there was a time when there wasn't no braille on medication there often isn't in the states.
47:44
We still don't have that now on the underground sometimes you can see like braille on the signs but they never used to be and you just start to notice everywhere where there is no access and you're just thinking what is happening. Why is this no access? It's so easy to put a ramp here, but when?
48:01 - Sara (Guest)
I guess when 80 of the population is able-bodied and fine, that's who they're catering for, and so the rest of us, yeah, by public spaces like that, loud noises and then the ability to like, wait in line in the sun not an option for her and so to be somewhere where there's so many people and, um, it wasn't like the perfect disability, accommodative experience or anything, but it was one of the better places we've ever been and it was largely because there is accessible public transportation or, in their, in their situation, like mass transportation, because it not public, it's within a theme park.
48:45
But the ability to just walk back to our room so easily that was so near us, just by jumping on the monorail, was amazing, and we were able to go to town hall and let them know what the things she needed were and she got accommodations immediately. I mean it was amazing and for us to be able to exist in that space and we were able to get these accommodations and I watched other people get them as well and it was like a little peek into what the world could be if it chose to, and it gives me hope. But it also makes me very sad Because even within this bubble that could have been so perfect, we had to come in through a different entrance almost always.
49:28
And they'd be like, okay, go ahead. And there's like a stream of people coming towards us because we're going in the out and I'm like, okay, and we're like fighting upstream to get, you know, past all of these. You know people that are trying to get to the next ride or whatever. But it was also very encouraging because we were able to get a scooter delivered directly to the hotel that was just available every single day for her to use and she could even bring it through the queue multiple times, which was amazing, and the thought of what would it be like if all of these spaces were thought of would be amazing, versus when we went to Comic-Con and we brought her wheelchair and we got to a room and none of the tables were just spaced far enough apart that we could navigate the room, just something so simple, and the juxtaposition between those two things was massive. Yeah, so there's, there's a lot we can do. There's still a lot of work to be done.
50:11 - Liz (Co-host)
There's so much work to be done, absolutely and what do you think about people who have narcolepsy or even other chronic conditions, who feel uncomfortable about using the term disabled or applying that to?
50:26 - Sara (Guest)
themselves. Yeah, I think that's most of us. There's a couple layers here. I think that every person I know that's disabled is unwilling to call themselves disabled at first, in part because they know people that have it worse than they do, and I think that's such an interesting place to be coming from, because, at the end of the day, it's kind of this competition for who needs their resources, and I think that it comes from this scarcity mindset that we create, at least in the States where you have to fight for your accommodations at every level.
50:53
I think this impacts and hurts able-bodied people as well, because if you can't ask for the things that you legitimately need, to be comfortable in society, we are all uncomfortable to a certain extent, and so when you shoehorn all of those resources into well, you have to absolutely desperately need this thing before we'll give it to you Sounds absurd, why? Why do we make people suffer so much before they're allowed access to the word disability or the resources that come along with that? It took me so long to call myself disabled because my best friend at the time had a very rare heart condition and her life seemed so much harder than mine, and it took me sitting down with her and having like a conversation of realizing she saw my life as harder than hers and I was like that's so crazy. Like you've got this, this crazy condition that affects X, y and Z of your life, and she goes. You've got this crazy condition that affects X, y and Z of your life and she goes. You've got this crazy condition that affects X, y and Z of your life. And it took that conversation of realizing that this is not a competition. We should not have to be competing for a scarcity of resources in this way. This is the situation we've created where we're forcing people to be uncomfortable on a daily basis. It's not just us, kind of everybody.
52:03
And when I finally decided I needed to start saying I was disabled all of the time and out loud and confidently, it was not just because I needed resources. It was to show other people that you can hold down a full-time job, hold public office and go to events on a regular basis and be disabled. I walk regularly, I drive my car, but I have an invisible disability and I like to tell people constantly I am disabled, so that it breaks their idea of what disabled is, and I think that that is the thing that kind of got me past that, because I needed to feel like I was doing it for somebody else, which is so silly. But I think that, especially women, I think that we think we have to give every bit of ourselves to everyone else. And you don't have to. You are allowed to be comfortable and you're allowed to claim need for things, and it doesn't burden other people.
52:52
This isn't pie Like. I have the ability to, you know, take a nap and it does not affect other people's lives. When I do so, I get my work done and that's all that matters. It doesn't hurt them that I needed a 30 minute nap today. That doesn't make me special and I didn't get something cool. They get to live a life without that nap and I think at least for me that's what I've seen and observed in other people is that we I think a lot of us are afraid of picking up that space and you're allowed to take up that space.
53:17 - Kerly (Host)
Yeah, definitely. I had the opposite experience. As soon as I got diagnosed I was like, yeah, every time someone said something to me I was like I have narcolepsy, that's awesome. And in the Caribbean community they call it like dropsy and they see it as like a joke. And it's like oh yeah, dropsy, like in Jamaica they call it dropsy. They'll say stuff like oh, my uncle had dropsy. Oh yeah, I had an aunt that had dropsy. But no, it's not the same thing.
53:42
And maybe it was narcolepsy or some type of sleeping disorder that this person had. And just because they didn't get diagnosed or that they had to live their life very differently and people thought of it as a joke or whatever doesn't mean that the person wasn't suffering. And it took me a long while to find, especially because social media wasn't as it was when I was diagnosed. I remember trying to have petitions signed to go to parliament to put it down as a disability, because at the time it wasn't considered a disability, it wasn't on the list and people were getting angry with me and saying why are you calling it a disability? It's not a disability and I'm like but it is, why are you afraid of that word? And you should want this, you know for you let's not hide around the things that we cannot do.
54:24
And I guess maybe because I had an experience very early on, when I was 18 or 19, not long after I was diagnosed, when I thought that I just needed to take pills and I would be better, and that wasn't the case. And when I did sign language, I met a deaf girl there and she was like someone was asking her if she would like to have my illness and she was like no. She's like no, no, I don't want to have that. She goes, she's very disabled. And the person was saying to her but you're deaf? And she's like yeah, I can't hear, I'm not falling asleep all the time.
54:53
She can't even drive, she's not even allowed to drive and she's always falling asleep she goes, I just can't hear I'm fine and like she goes, I don't want that. It was a shock to me and I was just oh gosh, she believes that she's better off than me. And it really shocked me and it put things in perspective in a way that I had not seen it myself and not really understood, and maybe because she was born deaf and she'd lived with it for so long and I was just this is new to me she could see ahead of what's coming for me. And I couldn't see it and I was thinking and she's like no, I'm still gonna be able to drive, I'm still gonna be able to do lots of things that she's not going to be able to do yeah, that's interesting.
55:29 - Sara (Guest)
This reminds me, it makes me think of this other like kind of thought process I've gone through, which is the stigmatization we have for disabled people as being less and less capable and so when we ourselves become disabled and we're the same amount of capable we've always been.
55:44
We just suddenly have the diagnosis we don't think of ourselves as less suddenly, and I think that that's one of those things that society does to create that separation and it makes us separate ourselves from people that are disabled.
55:58
And when you realize, wait, I'm disabled too, suddenly you realize all of those thoughts you've had about other people with disabilities are probably incorrect.
56:06
Also and that is an insane worldview shift to have to process you have to admit to a lot of things you might not like about yourself. When you have to do that and you have to realize all of those times you mischaracterize somebody or dismiss someone else's humanity because you were taught to do so, you have to suddenly realize not only are people going to do that to me, but I've been doing that to people who are probably just like me and are not that different. Yikes, and I feel like that that's a big part of this process of dismantling just the I think this comes back to patriarchy I mean, I know everything does, but I think it goes down to that too is realizing that separation from humanity that we give the disability community yeah, I think it took me a while to use the term disabled, actually, and I remember telling a friend who has a kind of fatigue or chronic fatigue condition and she was like why are you calling yourself disabled, like you're not disabled, it's not a disability.
57:01 - Liz (Co-host)
I think she felt like she was protecting me by saying that because we are brought up in a kind of ableist society where we think disabled people are not equal, basically, and so she didn't want me to give myself that label. But actually, by giving myself that label, it does protect me because it highlights that I do have differences in ability to your average person and therefore I need extra support. But I think, yeah, it's so interesting that there can be this resistance to calling yourself disabled and whether that comes from a place of, like you say, not wanting to take up resources from other people or it's that kind of ableism that is embedded in our society where we think, oh no, I'm not disabled, and coming to terms with that is quite confronting, it sure is.
57:50 - Kerly (Host)
Yeah, 100%.
57:51 - Liz (Co-host)
We've covered some big topics today.
57:53 - Kerly (Host)
Yeah, we have. Wow, we really have. This has been a really really good interview. Thank you, Sarah.
57:59 - Sara (Guest)
Thank you so much. I love talking about these things. You will live long enough to you know. If you're lucky, you will live long enough to see yourself become disabled is kind of the way that I like to think about it. I know it's a pretty common saying, but I still think that I'm lucky to have lived long enough to see myself become disabled. There are many people that don't make it to 29. I hope to make it significantly longer than 29, but I am thankful that I made it here this far already no-transcript, but I'm going to ask you anyway.
58:51 - Liz (Co-host)
So if you could press the red button and get rid of narcolepsy from your life and never have experienced it, would you do it?
58:59 - Sara (Guest)
and why I would not do it. I think it'd be tempting for a second if I could make it go away and keep my memories, because I could use my newfound energy to do work with it, but I definitely would not make it go away as a whole and forget everything about it. I don't know who I'd be and I really like myself right now and I've had, like I said, so many experiences that have led me to this very specific place and the place of advocacy that I'm in. I would not be able to do that work and that work is so valuable and intrinsic to who I am at this point that I wouldn't change it. It's too important, thank you so much.
59:35 - Liz (Co-host)
It's been so good having you on the show today. Yeah, so good.
59:39 - Sara (Guest)
Thank you so much for reaching out to me and having me on the show. I will promote the crap out of it.
59:51 - Kerly (Host)
You guys are doing amazing work here.
59:52 - Sara (Guest)
Thank you, and you're doing great work as well, and what is the non-profit organization that you work for? I work for Pocoon. It is a non-profit that represents Latinx farm workers in America, or specifically in Oregon, so it's not really related to disability necessarily, but a lot of the work we do overlaps with the work that I do. And then I sit on the Salem Area Mass Transit Board and that is where I do more of my disability advocacy, since we represent the mass transit services for my area and, although I'm not speaking on behalf of them today, I always have to give them a little shout out because I think that the people there do a lot of really important work creating accessibility for our community, think that the people there do a lot of really important work creating accessibility for our community. And, uh, it's, it's. Transportation touches every part of every person's life, whether you know it or not, and I think that we should all care and give it a give it a look and know what's going on in our area.
01:00:37 - Kerly (Host)
So yeah, definitely, and sarah, if you tell people your handle, if they want to get in contact with you or to look you up or support you, absolutely, uh, feel free to reach out on instagram duncanpnw is my instagram or on tiktok it's missalexandria.
01:00:55 - Sara (Guest)
I don't take public dms at this time, but if you comment on any of my anything I've ever posted, I will definitely comment back. Cool, thank you so much. I really appreciate it. This is lovely. You guys do amazing work thank you.
01:01:07 - Kerly (Host)
So we usually end with happy napping, happy napping everyone happy napping 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. You.
