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Episode 106 - Sharon Forstner - Living with Sleep Apnea, Narcolepsy with Cataplexy and Insomnia

1:06

Hey there, It's Emma Cooksey here, and I'm your host.

1:11

I feel like I'm quite often running around telling everybody Oh my word.

If you only listen to one episode of my podcast, make it this one.

And.

And I mean, I hope the fact that I want to do that so often speaks to, you know, the the kind of work I'm doing and and some of the really great guests I've been able to interview.

1:34

But today's episode, really it was a conversation that really stayed with me after we talked.

And I think that it's super powerful for anybody in a healthcare setting.

1:50

It doesn't even need to be, you know, sleep or, you know, somebody who's involved with Sleep Medicine.

I'm talking about like primary care physicians and people who are seeing patients regularly and trying to figure out and, you know, refer them to the right people.

2:12

So I think today's conversation with Sharon Forstner.

Of delayed diagnosis and how so many healthcare professionals missed her symptoms of living with three different sleep disorders.

We have to do better, right?

2:30

Like we just have to.

We have to all work together.

Until these delays diagnosis are just gone and everybody knows these symptoms and people get diagnosis really quickly.

So that's kind of what we're working towards because I don't want anybody else to have to go as long as Sharon did, just, you know, trying to make it and trying to, you know, get through the day.

2:55

And so today's guest is Sharon Forstner, and she's a wife, a mom and a sleep health nurse, and she lives in Houston, TX.

She struggled with extreme sleepiness and other associated symptoms for almost a decade.

3:12

Before being diagnosed with narcolepsy with cataplexy and sleep apnea in 2017, she's also living with insomnia.

So we talk a bit about how these three sleep disorders interact together and how challenging those treatments can be to try and implement together.

3:35

So she says that having a frequently misunderstood sleep disorder completely changed her views about sleep.

And and there there are so many myths and stigmas surrounding sleep that Sharon feels it's essential to share her story and raise awareness surrounding sleep and sleep disorders, to decrease delays to diagnosis and treatment.

3:58

So that's exactly what she's doing on this episode today, and I'm so grateful.

So without further ado, here's my conversation with Sharon Forstner.

So listen, Sharon, thank you so much for joining me.

Oh, no, thank you for having me.

It's quite, quite an honor.

4:15

So when people are telling their own stories about their journey with sleep disorders, I kind of just want you to be able to tell it however it makes sense to you.

So oftentimes people start with.

You know if they were a sleepy child or when they first noticed that, but it's really up to you how you want to tell your own story, so.

4:37

So honestly, I really did not consider so I I wasn't a really sleepy child throughout high school.

I noticed, like I could potentially use a little bit more sleep, but you know, I just didn't.

4:56

It wasn't impacting anything that I had to do from day-to-day and.

And I feel like, I don't know about you, but I feel like when kids are teenagers in high school, it feels like every kid is like staying up late and tired and it's almost like that's the norm.

5:15

Exactly.

Exactly.

And even from that perspective, as a teenager in high school, then early college.

And then having my first child.

So there were a lot of I guess life event so to speak that kind of kept me on this path of okay you're tired but there's so much more to do or and and then once I started working shift shift work in the emergency room as a nurse I just really like my sleep patterns and.

5:52

Quality of sleep.

Just like fell off the planet.

Like it was just like nonexistent.

But at at that same time, my husband was in the military.

He was deployed and I'm working nights and dealing with kids.

I had no idea, like, just chalked it up so.

6:13

How many children did you have?

So now at that point I had to.

Fortunately though, it was when I when we were living in Georgia, so I did have family help so that again like things just kind of seem to offset the actual struggle and battle that was taking place and so the more and more.

6:35

Explain like for people listening that aren't familiar, what were the kind of feelings that you were having?

Were you just feeling sleepy, like while you're at work and things and just having a tough time?

It would be horrible and I've always labeled myself as like a night person.

6:57

And again I've created the narrative around being someone who works night shift.

But it I would struggle towards, you know, certain times during the shift 22 or 3:00 o'clock in the morning.

But then that same struggle would occur on my days off during the day and so I just didn't know if I was coming and going and.

7:18

I would fall asleep driving, fall asleep coming home from work.

Yeah, just just like did.

You have any concept of?

I also find this kind of interesting.

Did you have any concept of what a sleep disorder was, or that there could be something you would see a doctor about?

7:41

No, not at all.

Because again, in hindsight.

Looking at the some of the other aspect, so just within that, I had no, no idea like this is something I need to pursue medical, medical intervention for outside of not being able to sleep at night.

8:06

So I had terrible insomnia.

So I'm struggling with shift work, can't sleep at night and it's just kind of like I'm in this tug of war, but.

You know, I feel like I can manage it.

You know, I'm superwoman.

I can, you know, deal with it by just taking an extra 5 minutes here to sleep or you know, sleeping in on the weekends.

8:28

Whatever I had to do to kind of, I guess accommodate and keep up with the demands of life and you know, as I, I think the turning point.

Was when I realized and and this is still well before I was even diagnosed.

8:49

The turning point was I'm tired.

And my husband, when he did come back, I could not.

We would go out on dates and I just sit at the table.

My eyelids would be so heavy.

Movies were a pain.

9:05

Like I would fall asleep in movies and you know, and then it got to the point where I was sleeping like through alarms I would.

Take a nap.

I'll fall asleep at like 10 in the morning and wouldn't wake up until you know, some missing, the picking the kids up from school, you know, answering phone calls like.

9:24

And it just got so I was like okay, so maybe I just need to not work nights anymore.

So that was my.

So at that point, did you have a level of almost like blaming yourself or no, you were blaming the fact that you're working at night?

9:41

Because I feel like as, especially as women like I, even after I start going to doctors, I would just be a bit like, why can't I get it together?

Like yes, you know.

Oh my gosh, yes.

And so my first so and and this is how that piece ties into it.

9:58

I said I'm not being as involved, mom, as I could be, right?

So if I work day shift, I can, you know.

Be there, you know when the kids get you know get off the kids, get home from school, cook dinner, do all these things because you know that's what you know moms do like we we do all that and and and it was it did really become a a point where I was like okay you have to change something so you can do more and show up better because right now this this is not cutting it so.

10:35

Starting the second cycle I started a date working day shift.

You know, 8 to you know that normal schedule, couldn't wake up in the mornings, could not get up, was always late.

Kids were late for school like and it just turned into this constant like morning time would come and I would just panic just just dread.

11:00

Would just feel me and this is like I said this is well before.

I even hopped on that path to, even trying to figure out what was wrong and.

You said sorry to interrupt you, but you said that that you'd had insomnia before when you were doing the nights.

11:18

Did the insomnia get better or you still had insomnia?

Still have the insomnia, And at that time that was the biggest focus.

Oh, you, you're just not sleeping at night.

But yeah, I'm not sleeping at night.

But there's something not right about my daytime activity either.

11:36

And but none of the pieces fit together.

Like I would see one doctor, I would see, you know, like a provider.

Here it.

But none of the pieces were tying together.

Do you remember what you were saying to your doctor when you went?

Because I think that can be super helpful to people listening who are maybe.

11:54

In that earlier process of trying to figure out what's going on with their sleep.

Because I remember going and saying words like, well, usually I'd be in tears, but like, I would say I'm overwhelmed and exhausted and I didn't really know the words excessive daytime sleepiness, you know?

12:13

So I think that can help people just to kind of know like what what that process was like for you.

What kind of things were you saying to the doctor at that point?

So two things about that.

You know, I'm exhausted.

I feel weak.

Weak, you know, I so weak.

There's like this generalized weakness just overwhelmed.

12:33

And then, you know, the fact that I can't keep up created more anxiety, more overwhelmed, attacks my emotional system even more.

And I think that is a key piece we miss out on, miss out on communicating.

How these things impact our daily life because it's so easy to go to a doctor and say like I'm tired, you know, But to say to be able to say that I'm tired and and and and just depending on the mindset of of the practitioner, though, you know just to be able to say that I'm tired.

13:03

I'm a mom.

I'm a nurse, I'm this, but my everything in my life is crumbling or being impacted by my.

Tiredness, you know or you know, never feel arrested.

I think sometimes that thing of like, I mean it really took for me sleep, falling asleep at the wheel to really get the medical like the doctor to really pay attention and say oh.

13:31

Like, I think sometimes, like relating it to how what's happening in your life, like it's making me late for work.

It's, you know, like it's affecting how I'm able to show up as a mother, you know, it's really affecting your life.

And that is the piece that I wish I would have been more vocal about because again, that narrative that I'm already not showing up who I want to be the way I want to do it and then have that.

14:00

Persona that I'm not carrying my weight as super mom and you know and then you would have people well you have kids so you're not going to get sleep and you know they're young or you're like they would rationalize all these things And so it did make me a little apprehensive about honestly admitting.

14:17

I'm not showing up in my full capacity the way that I want to because for me out of fear again weakness that label of of weakness and not doing enough and not being enough and it's just interesting how that all ties into the whole overall picture.

But I think once we get better at being able to not only listen to the symptoms but understand as patients how and and provide us how this impacts the patient's lives like.

14:46

Like, it's not you.

You saying that you know, you just got five nights of bad sleep and you know, like you're about to get fired from your job.

Like, This is Money.

This is your family's benefit.

This is, you know, your school, This is your college degree.

Like, it's really, it's really big.

15:04

Huge.

Definitely.

And so then.

When you so you just started going to providers and you weren't really getting anywhere with that.

Like were they kind of questioning mental health things or other diagnosis or they just kind of told you get more sleep?

15:24

It was a combination of all of the above.

So I remember the first, the very first time I kind of started noticing like just like my body, just.

Felt different.

I went to my provider and he was like, well, maybe because it was allergy season he was like maybe it's just allergies.

15:44

Like maybe your body's like, you know dealing with the pollen and DA, da, da, da.

And so allergy season pass went back and said, well, I'm still not feeling my best like I've taken all of these medications.

I'm just not so well you're did this full panel of lab work.

16:02

All your labs are normal.

We don't see any anemia.

We don't see the traditional things that we look for.

When somebody of your age describes what you're describing, we don't know what to tell you.

Maybe try taking the supplement, okay, trying taking the supplement.

16:21

Then it went on to get more sleep and then it went on to.

Are you depressed?

And, like, it just took this whole narrative, like this whole trail, like and so of course, like, I'm going to see a therapist now.

I'm like, I just don't get it because I'm stressed out about my performance in life.

16:37

My life is just falling apart and.

You.

Know we're talking about that.

And then here comes the antidepressants and here comes you know more sleep medications and and that was the story of my life for probably the next.

16:54

Six, 7-8 years from that, from that point, because I remember very distinctly in 2009, we were still living in Georgia.

I had like, I had to stop work.

Like I I couldn't because I couldn't keep up with it.

17:11

But I remember I had to go to Walmart before the kids got home.

I don't know how I made it to Walmart and into a parking lot, but I remember I woke up like.

I don't know, like 2 hours later and this was like a 2009 and just going like having moments like they're having to drop somewhere but take a nap before I even got out of the car just didn't just didn't make sense.

17:38

It just didn't make sense and but I I don't feel like I fought enough.

But mind you, I'm still going to the doctor.

So we moved to Texas, still going to see providers.

It's like, something's wrong.

Like I'm so tired.

17:53

I'm so sleepy.

Like I can't.

I have no energy.

Like I can't do anything and I can't do the things that I want to do.

And that went on for a very long time and.

There's no suggestion any of this time from any of these primary care physicians that.

18:13

You should look like they should refer you for a sleep study or look more closely at your sleep.

So I had one and I had one and we had lived in Texas for I think I had to have my son at that point and this is, this is how I got on the path, so.

18:31

You have kind of three kids at this point.

Yes, I have three kids at this point.

Got on the path of just kind of.

Well maybe there is something wrong with with your sleep.

Maybe you are just.

18:46

But we don't know why like because every every other thing that we tested doesn't.

And I can't remember if I had a sleep study at that point.

I don't.

I don't.

I don't even recall.

But either way like I remember having the discussion with a provider suggesting that now we check my thyroid levels because that might be an issue and they.

19:08

I guess preemptively gave me Modafinil and it was just kind of like, OK.

Medication for your thyroid.

For the sleepiness, the sleepiness, so.

So explain what that drug does.

I don't.

19:24

So Modafinil is like the stimulant.

Got it.

It was for.

Daytime.

Yes.

Yes, got it.

It's armored affinil, prod affinil, but Provigil Nuvigil, that's that's the only the term I remember.

And so they started me on that, but my insurance would not pay for it because they're, you know like the documentation type I didn't meet whatever qualification because at the time a lot of pilots it was a very popular drug to increase.

20:00

Yes, yes.

So that that's what it was labeled for and it was really highly prescribed.

So you know, didn't really get that.

So my other son, my, my first son is here.

21:43

So they didn't give you you don't have a diagnosis of anything, they just thought try this and see if it helps rather than okay interesting.

And then at that time, my husband was.

21:59

I think I was, yeah.

I was pregnant.

I became pregnant with my youngest son, my last child, and we ended up moving to Houston shortly after I had him.

But all the while I'm like battling this, this fatigue and sleepiness and just not really understanding like at at that point, I think I just resolved myself to being.

22:29

This person who's going to need a lot of sleep because now I have two, I have a 2 year old and an infant.

And that's just going to be the story of my life.

Like I'm just going to be that mom because at that point, every provider, every time I had a complaint, well, you're a new mom, you know, pregnancy does this, you know?

22:53

I had that too and it's really, really frustrating now in retrospect because.

I think that I deep dive knew that what was happening with me did not feel even though I hadn't been pregnant before.

23:09

I just knew like people can't be dealing with this level of tiredness like I would anyone like hire pregnant women able to have jobs, right.

Like I just was like this is so bad.

But yeah, so they.

I think that that is so common for women like they're told.

23:28

Even though they're showing up with symptoms of sleep disorders, they're told like, oh, you're pregnant and you're a new mom and that is a really tiring time.

But I feel like you knowing yourself, you know that there's something else going on.

Very much so.

23:44

And still trying to continue to show up as a new mom and, you know, as all these things, but you still have that you.

You're right.

You're 100% right.

You have that knowing you're like, wait a minute, like.

I know what they're saying, but I don't believe it.

24:00

Like it's not resonating with actually what I feel.

And it was just always so easy, I guess, to be dismissed or minimized to like this is what it is and we're not looking at anything else because no other rational explanation could exist other than.

24:26

You're a new mom and, you know, you just had a baby and you've got kids.

Oh, and I was in nursing school for my bachelor's degree at the time.

So they were like, well, wait a minute, you're doing all this?

There's no wonder, Why are you tired?

24:41

I was like, okay.

But I was, I would just sleep.

Like it would just be this intensified sleepiness that even.

On within a 24 hour period of not getting the traditional 7 to 8 hours of sleep, the sleepiness felt like I had slept in weeks.

25:03

Like it would be so heavy.

I'm like no.

And so you know Fast forward a couple more years and you know, I think at that point I had seen several neurologists because they were concerned about.

25:18

A seizure disorder.

Because in the midst of that, I started having these other funny things show up, like falling.

Yeah, like falling like my leg, just like I'm walking.

And then, you know, my leg is like kind of like going one way and I'm going the other way.

25:37

It's like, okay.

Now, mind you, I was able to walk for a very long time and it went out.

Any complications, so.

That would, that was the first thing my legs would just start getting out and then it got to the point where I would have a conversation and like my words were like I could not move my jaw.

25:59

And like Can you imagine, you know a professional or or being in a professional environment and somebody assuming that you're drunk and that because your words are slurring that bad.

And that's just some of the things that I experienced and.

26:17

You know it.

It's so funny.

I look back now in retrospect and and and just trying wish I hadn't have been so quiet because at the time I started to have a diagnosis like, but you don't want to tell people.

26:33

And you haven't heard of narcolepsy and cataplexy and all of this.

You just didn't know anything about it, right?

Because they don't train doctors and nurses much in that, so why would you?

Exactly because it's such a rare occurrence and and and so prior to that like I said I had seen 22 neurologists one was in and I think it was to the she was also like double certified in Sleep Medicine.

27:01

But we I'm just going to leave that there.

So you'd really like it would be the perfect person and you hit the jackpot, but no.

She literally told me everything she said.

Because that's when I start having these, these episodes of like, the weakness, my jaws, my my words stirring and then my legs like, like dropping stuff and like she's like, maybe you're having seizures.

27:26

And you know, once we did the test to roll out the seizures, she was just like, maybe you're just too stressed out.

Go see a, a, a therapist, go see a psychiatrist.

She literally told me that once, once she got the results of the EE G the the, the study.

27:45

She said, I don't know what to tell you.

Go see a psychiatrist.

Go see a therapist because it's probably from your depression, from you being depressed and anxious of all these things.

And I just, I remember I went to my car and cried that day I I cried.

28:03

I was so angry because aside from, you know, not even having a diagnosis, I would.

I wasn't even being listened to.

And it was just all chopped up to the same thing.

Like just just simply being.

28:19

Somebody who that's enraging all of the people who should be able to spot cataplexy symptoms, you would think that a person.

Yeah.

And and that was a really And then our at that point I really started to question myself, am I making this up, is it my stress?

28:38

Is it am I losing my mind?

Like what can I do?

How can I help, you know, praying and God, like what is happening?

Like I just didn't know and you know it.

It came a point where I ended up you know, having to to go back to work again just because of the dynamic of my family had two kids in college and then I had two babies and so I ended up having to go back to work full time and.

29:07

At this point I am at, at this point, you know, having to go back to work and just basically again like feel like I know something's wrong, but I still have to be that person to show up and push through and maybe it'll buff itself out, but the thing that really, really.

29:37

I guess pivoted like the IT it my we got to work remotely most days, right?

The days we had meetings, it was over hour, hour and a half away, so you know having to leave very early in the morning, but then that drive back in the evenings.

30:00

And then trying to sit through meetings and hold my head up and look like like they're talking and it sounds like the Charlie Brown characters won't won't want like my eyes are open but I I can't process anything I I I can't hear I can't process and and then trying to drive home and then you know just at this time I am seeing a a a therapist and I'm like I'm not sure how to tell you this because.

30:31

I am incredibly sleepy.

I've fallen asleep behind the wheel multiple times.

I have to pull in parking lots to go to sleep.

I have just a horrible feeling.

Yes, I have to stop doing certain things in like if I'm halfway home, I have to pull over.

30:49

If I'm doing the laundry or what, I have to stop and go to sleep.

And it is not like this gradual onset of like, oh, it is like Nope.

Right now.

Yep, Right now.

And so I remember her looking at me and and at that point she said I really think you need to go see a a sleep doctor and just so happens, I know a really good one.

31:18

So she referred me to him and this was around 2017, so I had gone 2009 all the way.

Up until and you know, and I know some people, it takes them a lifetime, you know, a lot longer.

I know some.

People a little that's.

Such a long time.

31:33

Yes, it is like when I think about it, it's like how in the world did I even like get get through that, but ended up going to see this particular sleep specialist and I remember I had to wait a long time.

31:50

You know, for the test and in between that I'm still driving back and forth and I woke up one time just before I hit the the concrete divider on the freeway again by the grace of God, like I I just remember my head like like this.

And then I opened my eyes and like the car was like, like that far from the the concrete barrier and I was going at least 70 miles an hour and I was like I can't do this.

32:15

And that's the that day.

I told my manager I can't, I can't do this anymore.

This is what's going on.

And I had to literally, like lay it out.

And I said I can't come back and driving until I get to the bottom of this and until I find out because that was all my talk about your life flash.

32:31

Like it it just makes me emotional now talk about your life flash between your eyes and you know, I I just wow, Yeah.

That was it was tough.

Yeah, that that was definitely a huge turning point for me.

Like falling asleep at the wheel, I think.

I don't know, like for months after that, even before I got a diagnosis, I had this feeling of like that was a miracle.

32:52

Like I really almost died.

It's so terrifying and it but it it's so frustrating afterwards because it shouldn't come to that, you know?

And you think about all the healthcare professionals you've seen up to that?

33:07

Point exactly 8 years.

Yeah, eight, eight years worth of, you know, in and out of different and and to the point where I, like I said, I really started questioning my own sanity and it impacted my relationships.

It impacted my marriage, it impacted my, my, my relationship with my kids and you know, employers.

33:27

I mean friends like it impacted everything.

And so, so when you had that conversation with your boss, were they able to accommodate you not having to do that drive or you had to leave that job?

I went at that.

33:43

From that point I went on shortterm leave, shortterm disability, because thankfully the therapist that I was seeing, she was able to fill out the paperwork until I got in to see the provider, until I got the sleep study.

34:01

And the diagnosis and all that.

So she she completed the paperwork and and I'm so grateful for her because had it not been for her, I probably to this day probably wouldn't even have a diagnosis.

I mean because she was adamant that I go like.

Yeah, well, I think once you know that information and somebody's sitting in front of you clearly struggling, you know like you really want to help but and so then when you got to see that provider.

34:29

And did you go see him and then have a sleep study?

And so.

And yeah, did he tell you, like, I'm just interested in what?

What did he say to you about you were explaining all your symptoms?

And was he able to tell you about what he thought it might be and, like, a bit about narcolepsy and cataplexy?

34:50

He sure did.

He sat down and he looked at me, he said.

But we won't know for sure.

Until, you know, I had to do the night time study.

And then of course, of course, I ended up with sleep apnea.

Yeah, as well.

35:06

So we did the night time study and.

So sleep apnea showed up in the night time portion, and then you did the daytime MSLT as well.

And what did that show?

Less than 3 minutes I was in RIM like.

35:24

He said it was probably one of the most like yes, and it you know how they wake you up for the naps and like all, all, all five of them, like just just like that.

35:40

And he's like, no wonder why you've been struggling for the past, almost 10 years now of your entire life.

It's like.

So tell me all about how you.

After getting those diagnoses and just him explaining that you know you're not crazy and all of these things like it's probably a mixture of emotions, but can you kind of explain how you felt?

36:08

Oh my gosh, I remember.

So it was him and his PA.

She was very sweet, by the way.

And you know, and it was just such a.

Refreshing experience to have someone validate what you have been going through and hear the words you know or be given a diagnosis.

36:31

First of all, to know that you're not crazy.

Like like there is like it wasn't your mind playing tricks on you.

It wasn't something you were making up.

It wasn't you being weak.

Because when you tell yourself those stories for so long, you start to believe it and you know it was.

36:49

It's so refreshing to have them sit down and explain to me that yes, you have sleep apnea moderate and then on top of that sounds like OK, sleep apnea I.

Heard that?

Which honestly, for anyone is enough to deal with it on its own.

Yes, exactly.

37:06

So I was like, OK, sleep apnea.

OK, I know what that is.

You know worked in hospital for I don't know how many years at this point know what sleep apnea is.

Yep, got a But the second part that came.

It's like, and you have narcolepsy with cataplexy, I said.

37:22

Wait, what?

And I think I felt like everything just kind of drained out of my face at that moment.

Because the scary part in that was I think I was familiar, like having experience in the healthcare field for as long as I did, I think I was.

37:48

Familiar with a lot of different medical conditions, but this one not so much.

The only thing that kind of popped in my mind and I forget this movie.

Was it the falling asleep in the?

38:05

Yes, yes.

And I was like, I should know the name of that movie because I've heard it in jokes so many times.

Like, what do you, is it like that?

Do you fall asleep like that?

Which is why I think like.

Julie Flag, our project Sleep is spending so much time like talking about media portrayals of narcolepsy because it has such a huge impact.

38:29

Like it literally is, you know, sometimes the first thing people talk about.

And you're like, if we had some better, you know, we have some movies actually made by people with narcolepsy, we would have some better references, I think.

Exactly and and in.

38:46

And so here comes the second challenge of this journey.

So I have narcolepsy.

Now what?

So again, this is not something that you just take a Tylenol for some antibiotics and it runs its course and you're done.

So now what?

39:01

And this is kind of where things fall off again.

Because me, as someone who believes heavily in education, resources, empowerment, you know, you teach patients, you lead them, the resources you give them.

Nope.

It was like, we're going to order this medication, We're going to get you started on it.

39:20

It takes, it went from 15 to 30 days by the insurance, got it as a whole.

Then we got to get your CPAP and all this and I'm like, well, what else?

And then we'll see you in about four weeks.

What else?

You know, there's.

And it was literally, I remember sitting in the car, bawling my eyes out.

39:43

Because like, I was so happy that I wasn't crazy.

But I said I don't know what this is.

I don't understand this.

I I guess somehow because of the struggle that I had gone through intuitively knew that there weren't many avenues for me to pursue in terms of, you know, learning and becoming aware of things I needed to, to educate myself on.

40:10

Like other than so I.

I remember I just googled narcolepsy and with the like, again, like you have a general idea of like the meaning, you know, based on lowly that movie.

But at the same time like what does that look like for me and how does that match up with what I'm going through?

40:33

And then as I began to pull up resources, that's how I came across Julie and I began to pull up resources and it's like.

It could look different in this person, it could look different in that person and so on and so forth.

And it was just amazing.

40:50

So I I just I started consuming content and resources and researching and figured out if you.

Found project Sleep and Julie flag are quite early and after you got diagnosed.

Yes, I did.

I did.

Thankfully I don't.

41:07

I I I think it was when within probably three or four days of of my diagnosis that I just started.

I think sometimes the community element of I'm not alone and there's other people.

41:22

I mean, I would, I don't have narcolepsy, but I would imagine that that's a big part of it, right?

That you, that you're not alone and isolated in your own experience of it.

Definitely, definitely that.

Changed the trajectory of everything.

41:40

Because even as I felt confused and lost when I heard the diagnosis, I had the opportunity to look at these, these resources and these support groups through project sleep and these all these things.

41:56

And I was like, there's a whole other world, a whole other world that's it's like this little hidden community, hidden gym.

From the medical community at the time and I'm so glad that's not the case now that you know more awareness is being raised and you know things are are are being like taken from the darkness into the light.

42:18

But it it was it was really exciting and and then the more I got to do like research and advocacy work and speaking and writing and you know just raising awareness it was it was it was really good so.

You got the.

42:34

The drugs for for narcolepsy, so you mentioned CPAP, but did you feel as though like how did that go?

Did you start CPAP right away or did it become kind of like a secondary thing because you were dealing?

42:50

With narcolepsy diagnosis, it very much became a secondary thing and and and and here is again as an issue that I struggle with because it was.

The irony and in that I kept, you know, when I was follow up with the sleep provider was like well you're not wearing your CPAP enough.

43:10

No.

Because I passed out on the couch like it is not that I'm being defiant like like I'm still doing things and and so I in conjunction with so the me wearing the CPAP didn't make all the other things go away.

The insomnia none of that it it didn't make all that go away.

43:30

And I remember the particular medication that I was prescribed as IRAM.

It was, it was effective, but I don't think I tolerated it that well.

And so I would have moments where like, I would go to sleep and not being the best sleep ever, but then my CPAP mask would be off.

43:50

And then, you know, I'd be up wandering the house like it was my family went through a lot, a lot.

You went through a lot as well.

Yeah.

And and and it was just so the CPAP became the focus of my struggle because the provider only saw that I wasn't wearing the CPAP.

44:09

So there's no way.

Because that's the only data that they have.

So I think sometimes it becomes more they're trying to fix the data and rather than speaking with you about what's actually going on with you, yeah.

Right, right.

And you know, that became a real struggle.

44:25

We still in that struggle, so to speak.

And it is really been challenging because I you you want to be a great patient, you want to do all the things, you want to do all the things so that you can be the best person that you can be show up in your life.

44:44

But it's really discouraging when you hear that you know you're not compliant.

So.

Basically, I don't care about your narcolepsy symptoms.

I don't care about anything else.

I won't listen to you until you put the CPAP on and you wear it continuously as directed like and and that's kind of and maybe I was just being a little softy in my own feelings.

45:05

But I think at that point, after having navigated so long and trying to advocate for myself for so years, so many years, and then getting to this point only to be told that.

It's it's I'm not getting better because I'm not being 100% a 100% of the time compliant with the CPAP machine and and that in itself was a struggle because then like I'm a mouth breather and so I had to do chin strap and then chin strap like it was just all and then the mask and then that would push the mask into my eyeballs and I mean it was just.

45:38

Everything.

I don't know if this is your experience, but I've talked to other people with narcolepsy who are trying to come, like, get accustomed to CPAP.

And I think some of sometimes some of the symptoms of narcolepsy which are to do with you know, having like you know, hallucinations or I'm not using the right terminology but like vivid nightmare type things going on like that is a major factor if you have something on your face.

46:11

Do you know what I mean?

Yes, absolutely.

Because I had a particular incident.

I'll never forget it.

We were.

Had gone to bed and the next thing I know it felt like like someone had wrapped me in like 16 blankets and I'm literally trying to move and I can't.

46:32

I I I can't.

And I'm screaming, but I can't hear anything.

I'm aware that my husband is next to me but I can't get his attention.

I can't make an like, I can't like I'm.

And I that felt like the longest night of my life.

46:49

But it does heavily impact the overall, I guess, environment to which you feel motivated to use those things.

Yes, yeah.

I mean, I'm trying to imagine as somebody who doesn't have narcolepsy, like even for me getting used to CPAP, like I dealt with claustrophobia feelings and.

47:16

All of that, and I think you know we need to, especially when it comes to this compliance thing of like insurance company taking people's Cpaps away.

Like you know, if it's one thing, if your only diagnosis is sleep apnea, but if there are multiple things going on like it just makes it that much more difficult I think.

47:37

Absolutely.

And it was a lot dumped on me at one time.

Because now you have to take the specific medicine by a certain time.

You have to be in bed by a certain time, you have to be hooked up by a certain time, you have to go to sleep by a certain time because you have a repeat dose of this medication by a certain time.

47:54

Then you have to get like it was a lot to deal with at one time.

Yeah, it was.

And you're still, you know, mom to your kids doing all the things, right?

Like then you're trying to do all this stuff at night as well.

Yes, there would be.

So some nights that I was so stressed because if I didn't have enough time to take the first dose of the medication, then I wouldn't be able to take the 2nd dose.

48:18

And then that means I would be up from like 2:00 to 6:00 o'clock in the morning.

Then I have to get like it was just like this whole vicious cycle, just.

And that's all feeding into insomnia, I'm sure, because you're thinking like, if I don't do that, then I'm not going to get enough sleep for this and.

48:35

Yeah.

Oh my goodness.

So how long has it been since the diagnosis and since you started that regimen of taking the Xyrem and being on Z bath and all that?

It's really hard to believe, but it's been six years.

48:52

Six years?

Six years this month?

Yeah, six years this.

Month and how, how are you doing now versus when you first got the diagnosis like have you kind of like?

Somehow, you know, kind of accepted it more like I feel as though for a lot of us there's a period of almost like denial and.

49:13

Just.

Like, oh, and then over time it kind of sells, yeah.

My period of denial was like a very active one because I remember thinking like, yes, I'm not crazy, yes, I have this, but, you know, this doesn't mean that I have to stop or this doesn't mean like.

49:31

You know, I can still.

I can't be put on for the Super one minute and I can power through my naps.

And you know, I know.

But I really had to be intentional about setting boundaries.

Because what I was finding what what was happening was I would have my like have my naps.

49:49

But then I feel so bad, like I really could have worked through that hour or I really could have ran like done something.

So I started basing my my.

Productivity on the you know, like you're taking a nap and you need 2 naps today like I really start.

50:09

So how much more could you get done And not fully really understanding that even if I did push through that hour, hour and a half by 2:00 o'clock, I'm like I'm not doing anything else, not doing anything else anyway, but it was a really.

50:29

It's a mindset of shit.

For sure, yes, yes, 100%.

I think for a lot of people it's this thing of I'm living with a sleep disorder.

Like like I don't know and and for for me anyway, I know it's different things but like I know that days where I'm able to nap.

50:51

And then, you know, like, I will be more productive just because I'm not like, dragging myself through the day.

But I don't know if that's your experience too.

Very much so.

Very much so.

I have to really and and then make it a point to, like I said, not only set boundaries and and with myself that when it's time for me to nap, I'm going to nap, but also to tell other people to let me be right because the kids are used to have kids, everybody.

51:19

Phone kids, you know, friends, everybody's used to having access to you.

And when you start to pull that back and kind of limit that, it's kind of like, well, you know, everybody, it shakes everybody up, it does.

It's really important though.

51:36

I think you hit the nail on the head like and and I think people worry about as moms like Oh no, like I can't.

Well, I did anyway, where I was just thinking like, oh, I can't really.

Tell them, you know, I feel terrible.

51:52

Like, you know, I've got to go and but like, now my kids are older.

So my kids are 10 and 15.

And I was first diagnosed with start to sleep apnea when my 15 year old was a baby.

So I've had a long time to kind of figure this stuff out.

52:07

But now that my kids are older, I mean, I think in a way it makes them more empathetic because you're able to say to them, darling, I love you so much.

Mommy has to take a nap because you know how I get like super cranky and like you know, so, so they're they've grown up with that.

52:27

And so now that they're 10 and 15, they're able to look at me and say are you taking a nap today?

Because they kind of know like you know things are going to go better.

Things are going to go better for them.

You know, like I I just think that it's.

52:43

It's a good.

I think we always have this thing like you were kind of talking about like being superwoman and I think his mother is like you get so many messages in society that you're supposed to be like doing everything And you know, whereas I actually think that for kids to see like this is how I take care of myself and sometimes you need to rest and sometimes, you know not every day you're not going to be doing all the things and.

53:12

It's, I think it's good for them, honestly.

Absolutely.

And and and that is something I kind of shield away from in the very beginning and you know do that denial phase like like limiting like how much I shared or or how much I would start.

But but as I began to to expand you know and and set those boundaries it was easier for me to say I just need to take a nap.

53:35

You know we can't do this right now.

I need to take it but I will there's something else I want to to mention when it came to.

Trying to talk about this to my family.

Some family members were like, okay.

So what does that mean?

53:51

You just have to go to bed at 8:00, o'clock.

Some family members were like, I don't care, but you still going to have to show up like it was a battle, like it was.

And this is my in my household and like, extended family.

Yes, extended family.

It was like, well, no, we got to be here at this time.

54:08

You got to show up.

You got to do all these things.

I'm like.

No, I can't.

Like I physically can't.

And to this day I I I don't really think everybody even understands the the depth and the extent of having a sleep disorder like.

54:29

Alone.

You having three.

I mean, like, you know, insomnia, narcolepsy.

And so you got me all together, Yeah.

Yeah.

And so it has been.

And I've had to get used to, you know, some people saying, you know, laziness or like procrastination or not productive.

54:48

And I don't or I don't need sleep.

Like I could just keep going, okay, okay like that.

That that mentality I've had to stop pleasing people in in that way.

And that's about the boundaries as well, right?

55:03

I'm just saying like I hear what you're saying and I'm also going to carry on with what I'm going to do.

Yeah, absolutely.

And it's so funny because I remember when my oldest son was in, I think he was in daycare, he was in daycare, had to start at kindergarten and he they had this this, you know they have a little writing assignments and and things like that and it and one of the things he was asked.

55:30

Tell me something about your mom, he wrote.

My mom has narcolepsy.

She sleeps a lot.

She has to take all these naps during the day and I miss her.

And it just like broke my heart though, because, you know, I felt really bad.

55:46

But I was actually happy that he acknowledged that because that to him gave him an idea that hey, mommy's not just being.

Mean or ignoring me, she has.

He understands, yeah.

Yes, and.

56:02

He also is 1,000,000 miles ahead of probably like most doctors.

Yes.

You know, just by knowing those basic things.

Oh yeah, for sure.

And he'll tell me now, Mom, have you had a nap today?

I'm like, no, I have not.

He's like, go take a nap.

56:18

And he'll tell.

He's 11 now, so he'll say go take a nap, go take a nap.

And it's it's just really, really interesting to see.

Wow.

Well, thank you so much for sharing all about your story.

Was there anything else that we didn't talk about that you want to mention?

I think we've talked about this a little bit briefly before, but through my own diagnosis and through my own journey, I was able to recognize things in my children.

56:42

Because now my my oldest daughter, she's been diagnosed with narcolepsy and some apnea.

My son has sleep apnea.

So we're kind of like a family of.

Sleep awareness and Sleep disorders.

But.

Do you think you were able to pick up those things fairly quickly after those those symptoms came up though?

57:01

100% because I said you need to go.

I tell my daughter, and she's been, it's been a while, a couple years.

So like maybe the next year or the year after she had had her sleep study and her diagnosis as well, because she wouldn't be able to the whole thing and she would drop them.

57:18

And sure enough.

But you know, it makes me a better person and not even from just for my household, but you know, and other people and having to redirect them from this narrative that you have to be on and operating 100%, a 100% of the time.

57:37

So regardless of if you have a seat disorder or not.

You still need to rest and you still need to take care of yourself.

So I'm a huge advocate and proponent now for sleep health, just in general.

But you know, for us diet with with diagnosed sleep disorders, you have to advocate for yourself because society is just going to tell you, Nope, I don't care what you have, you got to go, go, go, go, go.

57:58

And I refuse to live that way anymore.

I refuse to live that way anymore.

I refuse.

Yeah.

And I think that the more people who are figuring, figuring that out and are setting that example for their children, it's really powerful.

58:14

You can't be on all the time.

It's.

Just too much and we've we've generated a very harmful message.

You know to to kids and and other people of society if if you don't stop, you know you're never going to be successful if you take. 20 minutes a day to take care of yourself.

58:34

You know you're going to miss out on achieving your goals.

And in that narrative, and sleepiness is not laziness.

I've heard Julie say.

This is not.

Laziness.

Yeah, sleepiness is not laziness.

And you know, it took me a while to get to embody that statement.

But I yeah, yeah, I won't.

58:51

I will not.

Yeah, well, I'm so glad to have you as a fellow.

Advocate.

And I'm sure that we'll cross paths a bunch.

Absolutely, absolutely.

Thank you so much for joining me.

I really appreciate it.

And thank you so much for having me.

I mean, I love having these conversations and I love, you know, being able to speak with other people who understand it.

59:14

It really does go a long way and and you know.

United, I forget the actual quote, but you know, one person can only go so far, but you need like a group of people to go further something, something to that extent so true, but I feel, but I feel like this is the group that's going to take the narrative forward.

59:33

So I think so too.

I really do.

And is there a place where are you on social media that people can follow you?

Yes, on Instagram, it's Sharon under score, Alicia.

OK, I'm going to go ahead and link to that in the show notes.

And then if people want to connect with you, they can.


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