Interview with Melissa, Narcolepsy Type I patient

This week I interview Melissa Schuster, Narcolepsy Type I patient, veteran, mom, and friend. She discusses her journey to get a diagnosis and to live her best life with Narcolepsy. 

Transcript

Hi, this is Brandy Schantz and you're listening to Living Chronic. Today I'm speaking with Melissa Schuster, um, friend, army officer, uh, former R O T C Buddy and a chronic illness warrior. She was diagnosed with narcolepsy type. and medically retired from the Army. So welcome. We have a lot in common.

Obviously we both kind of left the army with some, um, some things that we did not come to the Army with, that's for certain.

Yes, definitely.

So, um, we'll start, uh, just talking about what was your journey like when you became, well, just getting the diagnosis, you know, how, how did, how did that journey.

Um, I would say that like I am one of the few people that Covid actually saved my life.

Mm-hmm.

Um, and so that's how I ended up actually getting a diagnosis. Like I knew. For the longest time something was wrong, but couldn't get an answer as to what. Um, so I contracted Covid August the 2020 OG strain. Um, and it tried to kill me for like six months.

Um, I was a long hauler. I had a really bad time, um, with bronchitis like symptoms forced around six months. I randomly spike fevers here and there. Um, yeah, it was not, it was not good. Um, so through that I was seeing a pulmonologist. Um, and so my last appointment to be cleared from seeing a pulmonologist, um, he asked that one simple question, how are you sleep?

and I don't think doctor had ever asked me that bef

now that you say it, I don't think I've ever been asked either Really.

right. And so not thinking anything about it. You know, he, he come to find out he was a sleep specialist, that's his passion. He asks all of his clients. Um, and so, you know, I'm explaining him, I'm tired all the time. He's like, do you wake. Rested and I was like, no. Like who wakes up rested? He's like, that's not normal. And in my mind I'm thinking that's being a grownup. I'm in the army. I have a stressful job within the army. a parent, you know, my son is having trouble in school.

Mm-hmm.

know, my marriage is falling apart. Like I'm stressed out. Like, yeah, I'm not gonna be sleeping. He's like, no, like you're supposed to wake up, rested.

Mm.

From a good night's sleep. And so we went through the series of questions. Um, I told him that I know, and it, looking back on it now, like how ridiculous it was to not say anything about it. But you don't know how you sleep is abnormal until, cause you people don't, we don't talk about it. We don't talk about sleep.

And so I told him that I know that I'm falling asleep because I start dream.

Mm.

And he's like, bro, , those are two processes that shouldn't be going on at the um, and so he sent me for a sleep study. You know, they do the home study first or they put the little machine on you. Um, cuz of course they test for sleep apnea.

That's more common. If we can knock sleep apnea out of the way. Like if a sleep apnea, cool, we'll get you C P A P, you'll be on your merry way.

right.

So I did the at home study, no sleep apnea. Um, so they brought me into the lab the night in today, and so I'm sitting with the lab tech and she's explaining that, you know, if we detect sleep apnea during the night test, we're gonna send you home in the morning and get you c p.

Get you started with your treatment. not, then we're gonna go into the daytime study. So I went through the night, no sleep apnea again into the day. Um, in the daytime they put you down for five 20 minute naps, I believe two hours apart.

Oh wow.

And I met the markers for narcolepsy. By like, it was obvious by NAP number three.

they were like, we're gonna stop torturing you, send you home like it's narcolepsy. You know, there's no need to do the last two

Right.

have what we need, um, for the study. And so that's, you know, how I finally got diagnosed after potentially decades, you know,

that, that seems to be kind of a recurrent theme no matter what illness you have. We, we go to doctors, we feel something's wrong, but we keep pushing through. Maybe the doctors say, I don't know what's wrong with you. You know, it seems to be a lot of us here. At least at one point. Maybe you're just having some mental health issues.

Yeah, and I, and I get it cuz narcolepsy extremely.

Mm-hmm.

Average doctor is not well versed in it, and it does look like depression, anxiety, P T S D.

Mm-hmm.

if you go back through my medical records, like the, the markers are there, the insomnia, the complaints of P M D D depression, like all of that there. And so, yeah, if you're stressed out and you're waking up exhausted, you don't wanna get out of bed in the morning, the most logical explanation is depress.

And so I was being treated for major depressive order for a very long time, and I would start a med, you know, I'm going to therapy for years. Um, the medication would work full time and then it doesn't. And so I switched to a new med and nothing ever really got at the problem. Like I never felt good.

Mm-hmm.

And so obviously fast forward to, you know, September of, was it 21?

Um, it's narcolepsy.

but how does that feel to finally have a diagnosis and know what it is?

Um, it's great because like, I'm not losing my mind , like, you know, and I'm, you know, I can say about me is I'm never not going to go to the doctor.

Mm-hmm.

And so it got to a point where I'm like, am I a malinger? Like is it all in my head?

Mm-hmm. 

I'm constantly going to the doctor, like are people gonna start looking at me like I'm crazy,

Mm-hmm.

what have you?

But I'm like, I don't feel good. I'm going to tell you that I don't feel good. And it. . You know, I wish I had kept a running log of copays,  for every time I went to,

both.

to see how much money I've spent over years and years to help myself.

but you know, good for you. So often many of us just stop. I've done it myself. I think, well, you know what, I, I must be a malinger. It must be in my head. Let me just take care of this by myself, and then, you know, things get really bad, and then well wait too late. So kudos to you for actually advocating for yourself and saying, no, this isn't in my head.

I'm going to the doctor. I'm gonna tell you what's. because a lot of people just can't do that, you know? So after that, you know, one of the things you know, I talk about all the time is what happens when you're having difficulty going to work? And of course, you and I both know when you're in the army, they expect you to have a certain clearance of medical, otherwise you're out of there. Um, what was it like coming to that point where you realized that it was time to medically retire?

Um, Luckily, you know, I had built a very solid reputation before the downward spiral, um because between Covid and, um, the narcolepsy, like I pretty much wasn't functioning

Mm-hmm.

at that point. Um, I had coworkers that picked up my slack. Everybody knew something was wrong.

Mm-hmm.

Um, like I went to my leadership, I went to the, um, E A P,

Mm.

um, and I was like, look, I don't know what's happening, but like I'm going through a crappy divorce.

You know, sick all the time. I'm can't maintain any longer. Um, and so I was covered by that, you know, and just working with my leadership to try to find me a place to go. And so it was. The fact that I had built a solid reputation really saved me in the end, um, from just being, you know, cast aside and I'm just failing and she needs to go.

Right. Yeah. And I think that's what's difficult for most people is, you know, how do I approach this now that I'm becoming ill and I can't perform the way I once did? What is it? That's the next step? And, you know, finding that next step can be difficult. You finally retired from the Army medically, um, July, 2022.

So it's been almost a year. Um, how has been living with narcolepsy and post army life?

Um, I am doing a lot better. Like what is interesting is now that, you know, the fog of sleep deprivation is lifting, I had no idea how bad off I actually was.

Mm-hmm.

Um, I remember. After my diagnosis, I'm sitting at my desk and I get an email from a soldier saying, Hey, ma'am, I'm, I'm back from school. It was great.

Here's my certificate. So, you know, you know, I graduated. I do not remember sending her to school.

Oh wow.

Not remember that whole process at all. Just out of the blue, I get an email saying, Hey, I'm back from school and. . You know, in my mind I'm thinking, well, what other information, like I was on autopilot, um, that I don't, or I'm going to find out in the future that I did, but I don't remember

Mm-hmm.

in such deep fog.

Um, so yeah, life is getting better. Like, I'm still not okay. Um, you know, I've only been on. What I say, the med that's saving my life, since April of 2022.

okay?

so, you know, there's been obviously several med changes to figure out like what works best for me. And so I still have a ways to go, but it is definitely a whole different world.

Um, then looking at the, the lifestyle changes. To help, you know, I cha you know, obviously to change jobs because the stress that old job like vastly exacerbated my condition. Um, and so now it's just trying to unpack my internalized ableism that there is a good chance that I won't ever be back to quote unquote normal.

Right.

And I can't do it all, and I do need to pace myself. And, um, yeah, looking at like what I've been doing lately is really looking at things that irritate me because what I've discovered is the things that irritate me or things that are actually draining, what little bit of energy that I have. And so I'm chipping away.

Like if there's something that I hate to do, than likely it's not because it's that thing, it's because of the narcolepsy that at some point it's draining stores that I don't have.

Mm.

so those are kind of like little things I'm looking at, like I have a shower chair now. Um, getting outta bed in the morning before meds is horrifying.

Mm-hmm.

So I sit down in the shower now, uh, small things like that, like a bench at the foot of the bed to sit down to get dressed

Yep.

right now, because my medication that I take at night is a liquid. It has to be mixed, like that irritates me.

Mm-hmm.

And so there's something about how I mix or need to do that medication that's not irritating.

It's draining energy somewhere or is it, I'm ready to go to bed. And so how can. my routine around so that that's not frustrating me.

I think that's the hardest part. Learning what your new life looks like and being okay with it. Be because we put so much value into being high producers, super everything, super mom, super wife, super employee, super, you know, volunteer. You know, we always have to be super and we forget that we're just as good a people when we're not.

Right? Yes. Like I am worthy because I'm a human being, not what I can do for others.

Exactly. Exactly. And even if you're not the top guy at work, you're still a valuable human being and very valuable member of the team. Even if you can't work 80 hours a week like your coworker who goes on every trip and you know, stays till eight, nine o'clock every single night. Um, that is hard to learn.

It's really, I, I forget, I have to tell myself every day, wake up, you're still a valuable person. Just because you can't run today does not mean you're lesser than just because you can't, you know, do what you normally would in a day. Doesn't mean you're a lesser than person. And it's difficult.

It really is. It really is.

I think it's the hardest. I, I mean, there's a lot of hard things and asking for. Knowing when to ask for help. I always wanna just be self-sufficient. I would say those are probably two of the most difficult ones. Like, I don't want your help. I wanna do it by myself, and then it's too late. And I'm like, well, okay, fine. Somebody please come in and help me.

Yep. I felt that so hard.

Well, and also, you know, it's, it's just interesting to me. I love that I started this podcast just because it's so helpful to just reach out to other people going through things and realize that most of us are going through the same stuff. We have this, you know, there might be something different with our disease, but we have the same thoughts, the same issues, the same, you know, struggles in many ways. of them we were talking about earlier before we started is, and nobody talks about it. Nobody tells you that you're gonna go through a level of trauma associated with this experience in your life, and how do you get through it, especially at a time where mental healthcare is so difficult to come.

It is. It is super difficult and you know, I am very privileged in the fact that I have decent health insurance,

Yes.

because I couldn't imagine, like, you know, I'm in a support group for folks with narcolepsy and there are folks that are begging to get on the medications that I'm 

on. 

Yep.

They can't because insurance won't cover it, and like the medication that I take to sleep at night is $12,000 a month without insurance.

Mm-hmm.

Um, I'm definitely privileged in that I can afford the medication that's saving my life right now. Um, about to start a med to, um bring me up during the day. Um, same, same issue with other folks in the group. They can't get on it and it's one of the best things out there, and so it's just, it sucks it.

Yeah. You know, there's things you learn. You never. You probably never would've known had you never become sick. tho that's just it. The things that I did not encounter until I became a Crohn's patient the medication, you know, a thousand percent. At one point I switched from my TRICARE to the Johns Hopkins family plan cause I thought that sounds really good.

Johns Hopkins is in the name. But what, what I did not realize is, as a private insurance and private insurance likes to make money. Spend money. So as soon as I switched over to them, they denied my medications. And I thought, well, you know what, while we're fixing this, I'll just go pay for it out of pocket.

No big deal. You know, I, I'm doing okay. And I walk into the Walgreens and say, yeah, I'm just gonna pick this up on my own today. The insurance is denying it. And um, next thing I know, I hear that'll be $10,000. And I thought, are you kidding me? what planet are

Right.

$10,000. But that's the problem. So many of us with chronic illness, if you don't have great insurance, that's what you're facing.

Staring at a cash cash register where they're looking at you and saying, that'll be $12,000, ma'am.

And you're like, uh, from where? From where?

What, what am I gonna do with that? It's, it's, it's frustrating when you have to learn these things where it's difficult to get medications without great insurance, where you learn that, you know, um, there's just not, you know, you, you've, you have these privileges that you don't think about. You really do. You know, health insurance, a roof over your head, even when you're feeling sick and can't get to work. The ability to not get to work because missing a day doesn't mean missing rent. you know, all these things that you just don't really think about until you get into this life and you realize, oh my goodness, there are people who are right now in severe pain and can't move. Or just so fatigued, they can't, you know, anything, but they have to figure it out because if they miss work

Yep.

they're gonna lose the house. So the little things we learn to be thankful for. I,

Every,

shopping each and every day, each and every day that goes by the things that I say, thank goodness I have this in my life.

yep, it's . Oh.

Well, it, it's difficult. That's for certain. Um, I like to think that there's always hope. We always talk about hope. things do get better. they always, they, you always find a way. Um, there's always something I like to ask everybody. What do you wish you knew when you were first Or even maybe. When you were first, um, having symptoms, you know, what do you wish you knew then that you know now?

Um, that I wish I knew how important managing your lifestyle. , um, because it's been hard to change bad habits. Um, like I love to fall asleep on the couch watching tv. I do, but I'm on a strict bedtime routine. I am strict with my medications because I better.

Mm-hmm.

Schedule, um, don't really think in your younger years.

So I'm thinking about my twenties, where I was being diagnosed with depression, anxiety, P T S D, all of these other conditions that how much I could have helped myself had I taken better care of myself.

yes.

um, a lot of managing my symptoms is diet, exercise, sleep, like, you know, the, what is the, the fitness triad

Um, like

maybe it wouldn't have gotten so bad the point where I was barely functioning. I don't know. But to consider how important is taking care of yourself any or disorder? Um, I wish I had better habits earlier in life.

I think we all do. I think we all do. but you're right. That's, that's definitely, there's some things I can't tell, but there are some things I can, and when I take care of myself, I get the right amount of sleep, I eat right and exercise. It really makes a difference. And. how well I function, especially if I'm having a flare or the disease is very active. Um, it's just amazing how that one, you know, those few little things just change everything about how you feel.

Yep. if I could have not learned the workaholism,

Ooh, that's all of us. We live in the United States.

I.

in the Army. Mm-hmm. We, no, we live. You're right. That's it. What's difficult? That's what makes it so difficult. sure if I had people on this show from Europe, they would probably have a different perspective. I think it's especially hard for us because again, you know, I live in the DC area, it's like the Playland for, know, the straight A student who's type a plus plus plus who's, know, not happy unless you know. they breached the pinnacle of their career by 45.

Yeah.

it's so difficult for us to think, you know, you know, instead of staying late tonight, I think I'm gonna gonna go home and rest and take care of myself. Or instead of, you know, Saturday and Sunday this weekend, maybe I'll just take the weekend off and, and try to relax. It's, it's because it, you, it makes you think you're a lesser person and society tells you you're a lesser person. Oh, you worked 40 hours this week. must be nice. that's not what you meant. I do have a disease and it's important that I dial it back sometimes.

Yep.

I wish we could. That's, that's my, that's one of the many things I wish we could really change.

You know, a million hours does not make you a better human being,

It really doesn't.

often it doesn't make you better at your job.

It doesn't, but it makes you more stressed out.

that it does that, that it.

I like making that. You really shouldn't be making sacrifices like time with your family, like, you know, if I could take back. Being at work to be at home with my son more, I would, but the expectation is like you don't have a family in the Army. Household six has taken care of everything. And I was like, there was one time I was sitting in a meeting with a very senior officer had made the comment about something, oh, you know, the wife at home will take care of that.

I'm like, I don't have a wife at home. I don't have a wife at home to take care of that. And so it's just, it's that culture that the expectation is you have a spouse at home that's taking care of everything. And I didn't  so, and I don't now. Um, so yeah, my son is out sick from school. I'm out sick because he's out sick from school.

Like there's no, know, oh, my husband can take care of that. No

No, you're, no, you're right. Um, That's, that's a whole nother show. Sometimes. You know, it's military. It's very different than the civilian community, you know, here in DC the first thing that I actually loved when I first came here is I realized this is not the military, which is very, has this very old, it's almost like going back in time.

Sometimes they, I, I never know how there are so many wives that don't have jobs. I'm like, oh my gosh, this is, It's, you know, this is almost strange at this point, you know, but it's expected to have this wife that stays at home and takes care of the kids in the house. And then, you know, the, typically the man goes out and works and you remember what you know, and, you know, being a woman in the army and an officer, you know, they, they almost don't know how to deal with that sometimes, you know, especially when it comes to. not gonna have that role necessarily. Of course, I do meet some stay-at-home dads that are, you know, taking, you know, taking on that role. But largely, where do we meet our husbands

In the.

Army, So, you know, and, and it was always hard trying to bring that together and of itself. Uh, no sir, I don't have anybody to take care of that at home.

My husband's actually. in Afghanistan right now, or you know, it's just the life of a woman in the Army. So we get it kind of double on that cuz we, we are expected to do everything, um, in the Army. Whereas in DC everybody expects that your spouse works. They just ask what your, you know, oh, what does your husband do for a living?

What does your wife do for a living? You know, this concept of household six. Isn't there, which makes, actually makes it a lot easier because they know if know there's something wrong, one of you two's gotta take care of it and it's just, you know, well sorry, but my husband took care of all of this last time, so it's my turn,

or, you know, works really crazy for me.

Would you mind taking this? And then when the roles are reversed, then I'll pick up the slack. So it is a much easier environment. Um, and I don't think. A lot of people who have not served in the military, particularly as a woman, I don't think they understand that. You know, there's this whole organization where it's expected that you just have this person that's

Right.

anything, you know, it's done

Yes. Yep.

Um, ugh. But that, that's a whole nother, whole nother problem. But it probably makes us worse at what we do, you know, cuz we're, we were always expected to be here. So when the doctor tells us to come down to here, it's like, I don't even understand that concept. I was already here as an American, but then I was here because I was in the army and a woman.

So getting, learning how to calm down is difficult.

it's really difficult, like when I'm working with, you know, my therapist right now is how to manage my workload by how I'm feeling, like, yes, I need to. Offload some things on the days that I'm not feeling well on how I make, how do I make the decision as to what that is, what I'm back. Um, but she's like, you absolutely have to, you can't keep up that same pace.

You need to be able to allow your.  responsibilities to fluctuate based on how you're feeling. And so that concept is wild. Uh,  me to try to figure out, um, you know, what I, what I, I keep on my plate and what comes off, um, has been difficult.

Mm-hmm. it's, and it is for all of us, and I don't know if we'll ever perfect it, but we keep getting better.

Yeah, it's true. Day by day, you know, I learned something new about myself. I learned something new about and, and I, and I wanna make sure I say that, you know, narcolepsy is pretty cool, honestly. Um, The research behind it is phenomenal. And so it's a very unique, interesting condition. Um, but it does have its fun side effects.

And so like one of the things I'm very proud of is like I can fall asleep on the plane before we even taxi down the runway. I

I admire

power  like.

is a superpower.

I can fall asleep anywhere. I don't have to, you know, I don't have to worry about that part life. Um, know, under the symptom that a lot of us have is excessive dreaming.

Like I dream Whole Lord the ring style movies at night and they're pretty flipping awesome . Um, but like, you know, the meds tamp that down. know, I'm not close to waking all night long like I was in the beginning, but like, if I want to like I'll, if I wanna have a glass of wine or two on a Friday night, like I won't take my meds that night and come back the full, you know, I'm traveling through space trying to save planets in my sleep , and so, you know, there's a lot.

Kind of cool things that I experience of it. Um, even though, you know, knowing that I'm falling asleep because I'm dreaming is a bit odd. It's still, it's funny. Um, and so there is a lot of kind of bright side that I make sure I acknowledge and I look at when it comes to narcolepsy.

Mm-hmm. I like that, that you take a bright side to it and look at it as a positive. Cuz so often it's easy to get trapped in your negative feelings of why is this happening to me? I cannot believe I have this disease. Um,

Yes.

seeing that positive cool side I think is really great. It's, uh, that's something that I think takes a lot of people years to do if they ever do. have never found the positive side of mine yet.

Uh, and there are things that before I even knew that I would do, because it was fun, like I know if I fall asleep on the couch with the TV on, I'm pulling in to my dreams, is playing on the television. And so I do that for fun, knock out for a nap on a Saturday afternoon. Not realizing that it was narcolepsy, but it was just fun.

It was cool. I love to nap. is one of my favorite things to do. I just wish, you know, I could have a job where I could  not have to be awake for an eight hour stretch. A.

know, I know. I have to say when I went into real estate, that, I mean having different diseases of course, but one of the benefits was. If I just really did not feel well and needed a nap and I could get nutritional imbalances. So I've often, I used to joke, am I narcoleptic? Because I'd just be sitting here and then just crash just down. Um, but because of that, being in real estate, if I'm feeling that way, I'm like, I'm just gonna take a two hour nap. That's it. mute. move, I'll move things around. But you know, there's. you know, I'm my own boss, so, you know, just, Hey, we're just gonna have to push our meetings back two hours, if that's okay with you guys.

Thank you. And then I just take a nap. And I have to say, that's probably the best part of real estate

Nice.

without a doubt. a doubt, for everybody out there who's ever had to deal with falling asleep because of severe fatigue or you know, whatever. That's where it's at. The, I'm taking a nap in the middle of the day statement.

That's awesome.

Well, thank you so much for coming on and sharing your story and your journey. Um, it's been great learning from you and, um, hopefully we can get you back on the podcast again.

Yeah. No, this was fun. Thank you. Thank you.

Thank you, and you've been listening to Living Chronic.