Still Sunflowers: My life with endometriosis

Another Time, Another Place

I was going to wait a few days to write this, but I can't get it out of my head, so I guess I'll write everything out right now.

So basically, if you're not interested in reading this entire post, I'm going in for my second surgery on Nov. 9 - just a month shy of two years since my first one.

And I... I'm feeling utterly, hopelessly and devastatingly defeated.

This feeling actually started a few weeks ago on a Tuesday morning. I'd spent the night prior wrapped up in my heating pad and drifting in and out of sleep on the couch. It was that kind of hazy, confused sleep in which you keep trying to wake up, but you're pulled deeper and deeper into chaotic dreams that don't make sense. And you finally shoot awake like you're surfacing for air before drowning.

Or maybe I'm the only one who sleeps like that...

Anyway, I woke up the next morning surprisingly refreshed. I wasn't in the sickening, dragging pain that I had the day before, so I got ready for the day, made breakfast and started skimming my work emails.

Within an hour, my vision started to go blurry. My ears rang louder and louder. A cold sweat broke over my entire body. What the hell? Am I passing out?

I managed to type out an instant message to my boss through bleary eyes. "I'm passing out. I have to take the day off. I'm fine, probably. Okay, thanks bye!" And I also composed an out-of-office message. And people think chronic illness patients can't do anything...

I collapsed onto my bed and felt a wave of nausea, pain and heat that I hadn't really felt since before I was diagnosed with endometriosis. As my brain continued to wail "What the heeeeelllll???" I fell asleep until 1 p.m. and then woke up to text my very worried boss that I was actually alive.

I hadn't passed out because of my uterus in a long, long time. And it definitely had never happened during work hours. So of course, I was embarrassed. I take pride in not letting my disease affect my work. But whatever happened clearly couldn't have been prevented.

So I called my ever-elusive ob-gyn's office and pleaded for an earlier appointment than the one we have scheduled for uhh... January. They fit me in, and I just had to hang on and hopefully not pass out until then.

My appointment was last week Friday, and I decided to take the afternoon off. I had pulled extra hours at an early morning Saturday event and a Monday conference, and I was just ready for the week to be over. There was also that foreboding feeling that my ob-gyn wouldn't have exciting news, so I figured I wouldn't be able to reply to work emails with an answer other than "I DON'T CARE. MY UTERUS IS ON FIRE. GREAT, THANKS. - TRACY"

But the thing was I actually felt okay that day. After my fainting episode and a rough few days following, my body seemed to get over whatever the hell was bothering it. My energy miraculously came back. My pain levels were low. I think I even told my physical therapist I was at a three on the pain scale when I went to see her.

But as I sat in my ob-gyn's office and swung my feet back and forth for a half hour, I knew that I couldn't count on that. I can never count on that. In fact, right before my first surgery - the one that would diagnosis me with endometriosis - I remember going, "I've felt fine this whole week. Why am I asking for this surgery?" And then I found out why I demanded it in the first place...

My doctor finally came in, and as usual, any frustration I had toward her for neeeever being available vanished. I mean, this woman is fantastic. She's smart, sympathetic and amiable, and dammit, I can't stay mad at a doctor who knows her shit.

I detailed my symptoms, mostly focusing on the month and a half of non-stop fatigue and pain. She checked me over to confirm that, YEP, Tracy hurts a whole hell of a lot and then furrowed her brow.

"When was your last surgery?"
December 2014.
"Do you think it's time to go back in and clean things up?"
Sure, why not? Sounds fun.

Okay, I wasn't that eager to have a camera stuck in my bellybutton. I asked a few questions about my options, and she said what I thought she would. "Well, there's only so much medicine I can give you before we have to go back in and get rid of what's there."

As much as I thought I'd have to get another surgery in two years, I was really, really, reallyyy hoping I could push it off a little longer. After a fun-filled two months of trying to figure out my fatigue (and, by the way, my prior auth on that medication still has not come through yaaay) I wasn't quite thrilled to have to also deal with a laparoscopy and the recovery.

But this time, this ain't your mama's laparoscopy. After my doctor cuts and burns off the visible endometrioma, we're going to check out my bladder because DAMMIT people just won't believe I don't have interstitial cystitis! And then, we're injecting some shit into my pelvic floor muscles so that they calm the eff down! And then, we'll probably throw in an IUD while we're at it because, hey, I don't want to deal with all those painful "awake" procedures if I can do them while I'm dead to the world.

(Can I just say that I love that my surgery is the day after Election Day? If it doesn't go the way I want, at least I'll be unconscious for a good few hours of the following four years...)

To be honest, getting all of that done at once terrifies me. I mean, my mom recently endured a surgery in which they literally took out her organs and put them back in, but I still fear pushing my body beyond its limits. I already had concerns about recovery from a surgery's second time around, but all of this at once seemed so overwhelming.

My doctor sent me on my way to scheduling, and I figured it'd be a few months until they could get me in. But when I heard "Can you make November 9th work?" my eyes got wide. This was all happening really fast. I just went from absolutely never getting to see my doctor to "Hey, let's cut you open in less than two weeks." I scribbled down the info in my planner, stuttered a thank you and went to sit on a bench for check out.

As I texted my husband and my mom to tell them the news, I listened to the sounds of nurses cooing over newborns that were being paraded past me. I politely smiled at the proud mothers and then gnawed on my lip as I thought about my surgery.

Another movement caught my attention, and I lifted my head to see a woman my age walk past with ultrasound pictures in her hands. She had the glowing sheepishness of every soon-to-be mom and breezily followed a nurse down the hall.

And that's when I broke.

I've never felt the compulsion to be a mom. My maternal instincts begin and end at fuzzy animals. But the procession of women with functioning uteri just gutted me. Here I was, 26 years old and about to go through another surgery that would simultaneously heal and harm my body, further reducing my ability to conceive, further building scar tissue for my nerves to coexist with.

I don't really remember checking out. I remember getting to my car and crying.

It's moments like these when I feel stupid for feeling sorry for myself and when I also want everyone to stop giving a shit about whatever they care about and feel badly for me. I spent the rest of the afternoon in a pattern of bawling, then suddenly becoming chipper again, then sobbing into my husband's shoulder, then making a joke about something irrelevant, and then letting my dog lick tears off of my face.

This mild manic-depressive episode was fairly fleeting, as I had my band's Halloween show to worry about. I broke my surgery news to the guys at practice the next day, and I have to thank them for dealing with my bizarre health issues and the fact that I sometimes suddenly discuss IUDs after concerts.

My husband's and my "Stranger Things" Halloween costumes

With a very successful show and an offer to play someone's wedding ("YOU WANT TO PAY US?!"), I didn't have much time to cry over my busted organs again. But in a silent afternoon today, I mulled over what lay ahead of me.

I always remind myself to be thankful for difficult medical procedures, and honestly, I am. I have great health insurance. I live in a country where I can get this surgery. But the other half of me is angry that I have to endure it in the first place. Furious that my best treatment is surgery after surgery until I die some day or something.

Just how long will I be able to go before my next one? Another two years? Less?

Just how much damage will they find when they cut me open?

Just how much more will I have to sacrifice and suffer for something I didn't ask for?

With my surgery coming up much faster than I anticipated, I'm trying my best to stay positive. My goal is to be as physically active as possible over the next week and a half, so that I don't bitch and whine from my couch about how "lazy" and "fat" I'm being throughout recovery. (This is a personal problem I'm still trying to work out...)

Honestly, I don't want people to feel sorry for me. I want them to see the hurdles and complete roadblocks to effective health care for women and feel angry for me. I want them to help me work toward a day when surgery isn't the "best treatment" for an incurable disease that affects 1 in 10 women - one that so many don't even feel comfortable talking about.

My righteous anger will subside. I recovered quickly from my last surgery and will likely breeze through this one.

But for now, I want to feel the suffocating injustice that I've tried to be chill about lately. I want to be sad and frustrated and defeated and whatever I need to feel.

Because if I don't feel it now, I'll feel it later. And I need that time to overcome.

Bright morning lights
Wipe the sleep from another day's eye
Turn away from the wall
And there's Nothing at all
Being naked and afraid
In the open space of my bed
- "Another Time, Another Place" - U2

11:45 PM
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Damn, Girl, You Sleepy

symptoms

So last month was really tough. In addition to some above-normal pain, I spent a lot of September in a kind of fuzzy, not-really-aware zone in which I have to do things to double-check that I'm actually awake.

It's like Inception.

I need one of these.

Actual footage of my tantrum

As you may know, that ongoing sleepiness led me to finally seek help from a specialist. I endured a miserable sleep study at the end of August, and two weeks later, I got some vague test results that essentially said, "Yeah, you're sleepy, but we're not really sure why..."

I wouldn't get detailed results for a few more weeks in my follow-up appointment with my doctor. So in the meantime, I struggled through days in which I fell asleep sitting up at my laptop, jerked myself awake from spontaneous naps after work and in which my dog totally gave up on me waking up with my first alarm.

If your dog doesn't even have faith in you, I mean, who does, man?

I was starting to get impatient. It was clear to me that I was tired because my body was in pain, and my body was in pain because I was tired. There! I diagnosed myself again; now, please give me a treatment plan thx.

To add to that, my endometriosis goes in a cycle in which I'm in significant pain and nausea for one week out of the month, and then the following week, I can't eat anything. Okay, I can eat like five things, and they're mostly terrible for me: pizza, cereal, macaroni and cheese, grilled cheese and Jimmy John's (xoxoxo).

That's about it. Nothing else sounds good, and if you put it in front of me, I immediately lose my appetite.

This time around, my flare-up week and my eat-only-processed-cheese week were especially rough. So adding that to my inexplicable fatigue, I spent most of September being, as I put it, useless. I could barely concentrate at work, I think I maybe did laundry once, and the two times I tried to work out at the gym failed miserably. (There was, however, one day when I was hit with a sudden burst of energy, cleaned my entire house and then died or something.)

All of this culminated into a slightly embarrassing episode in which I was trying to style my hair, as I'm still getting used to not having a pixie cut for the first time in six years. I progressively got more and more frustrated with my thin hair, until I exploded about how I'm always fighting my body, how it never cooperates with me, how everything is terrible, etc. and then I cried.

My husband, Andrew and our dog, Juno both had to coax me off of my metaphorical cliff, and then I later remembered I hadn't taken my antidepressant that day. Funny how that works...

Anyway, despite my melodrama, there was a lot of truth in my tantrum. I hadn't felt in control of my body in a long time, and the fatigue just made me angrier about it.

But after my little meltdown, I realized that something had to give. And unfortunately, in this case, it had to be me. I had to stop fighting and take a seat on the bench for a little bit.

So I gave in. I stopped forcing myself to feel better. Instead of dragging a tired and sore body to the gym, I scaled back to walks and yoga. (My new favorite YouTube instructor is Yoga with Adriene, fyi.)

And I slowly started to feel better. While my energy didn't magically come back, the stress subsided, and that made a major difference. I know endometriosis and stress don't get along, at least in my case, but I tend to forget that and then get further stressed out when I remember...

It at least held me over until my appointment with my sleep doctor last Monday. He told me that while I exhibited a lot of the symptoms of narcolepsy, they couldn't officially diagnose me through my sleep study. On average, it took me five minutes to fall asleep during the 20-minute naps they scheduled for me every two hours. (Completely unsurprising to me. I am the queen of naps.) But I never entered a REM cycle - or, in other words, started dreaming - which meant that they couldn't confirm I had narcolepsy.

They were able to officially rule out sleep apnea and restless leg syndrome, which I already knew I didn't have, and put a penciled-in label on me called "idiopathic hypersomnia." In other words, "Yeah, you super sleepy, but you sleep just fine." It's thought to be a neurological condition, and like all of my other conditions, there's not really a cure.

There is, however, treatment. ...treatment that I have yet to receive because of insurance, but treatment! My doctor prescribed me a stimulant that should help keep me awake throughout the day, and I reluctantly accepted it.

I say reluctantly because I feel like I'm on a ton of medication. While I'm actually down from where I was a few months ago, I can't help but worry about the long-term consequences of taking multiple pills, every single day, for years and years.

Even my doctor offhandedly said, "You probably don't want to get pregnant while you're on all of this medication." (Yeah, that's not going to happen, friend, but I appreciate the concern...)

It really sucks to have another diagnosis handed to me. It sucks to exhaust all of my home remedies and have to surrender to the professionals. And as addiction is so frequently in the media, it sucks a third time to be "one of those people" who pops pills in meetings and whose purse clatters with all her meds.

Anyway, that's a tangent I'll probably get to in another blog post. And one I don't feel like dissecting right now.

For now, I'll see how this treatment goes. I'm hoping I won't have to stay on it forever, but given that fatigue is practically synonymous with chronic pain, and given that I've fought this for years without relief... I'll probably have to be.

9:49 PM
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Endorse Me!

1:29 PM
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Resilience

recovery

I should be eating dinner or taking care of chores or doing a myriad of other things, but I'm really pissed off, so I can't go on with my life until I write it all down right here.

So unless you've managed to escape every discussion about the election, you've probably heard candidates' health come into question on both sides of the aisle. And before I get into this, I'm going to try to stay as non-partisan as possible, and no, I'm not telling you who I'm voting for. Because that distracts from what really bothered me about the past few weeks of political news.

And also, I don't know if either candidate has a serious illness or disability, and I frankly don't care. Which is kind of the point of this blog post.

As I skimmed through the news and tweets on candidates' health, something really killed me about the language being used to discuss this issue. Something about the way both journalists and your average internet troll questioned the ability of someone to manage themselves with an illness. Something about the way someone said to me, and I quote, "I don't want a diseased retard running this country to the ground."

In short, it's ableism.

If you're reading this, and you, like me, have endometriosis, I'm sure you've experienced ableism in one way or another.

"Should you really be lifting that heavy box?"

"Hi, Tracy's husband. How is Tracy's health, even though Tracy is right here?

"Maybe you should take a break."

"It must be really nice to take an hour from work to go to the doctor every week."

"You shouldn't be doing that if you're sick."

"You know what, you actually don't look sick to me."

The list goes on... and if you have a disability, it goes on even longer.

What it boils down to is an assumption that you understand an ill or disabled person's ability better than they do. And in that assumption is usually the belief that an illness or disability automatically limits you.

And when that's put on blast at a national scale, it's a very revealing insight to how our society views people with disabilities or illnesses. When words like "incapable," "inept" and "incompetent" are thrown around next to diagnoses from armchair physicians, what does that tell people with health challenges? What does that say to our professors, employers and coworkers who work with us? What signals does that send to people who see the man in the wheelchair, the child with a prosthetic or the woman with an "invisible" illness and don't stop to actually know them?

We spend our whole lives fighting to be treated like anyone else. And now, of all things, the election is setting us back.

This afternoon, I was talking with an endo sister about how I've recently felt that I've been skating by on sheer luck. That I've been able to recover and press on through my illness, and that my education or work have never suffered because of a disease I've carried for 15+ years. But that it's all luck, and eventually, it'll all catch up to me.

But it's not luck. It's resilience.

If there's one thing I've learned by connecting with and talking to people with disabilities and chronic illnesses, it's that they're the most resilient people I've ever met. They're the hardest workers, not only because they "have" to be, but because they want to be. They're the most compassionate and understanding people. They're the first to offer to help. They're problem-solvers, negotiators, ambassadors and forecasters. They're unbelievably patient, see all sides of the issue and, above all, they bounce back faster than anyone from the lowest possible points.

If I were picking a president, I would want a chronically ill person.

There are some who wring their hands and pull their hair and screech, "But I don't want a sick person who could die in office!"

First of all, anyone could die at any point in time ever, so that's a really nonsensical argument. Having an illness or disability doesn't necessarily make you more likely to die than an able-bodied person.

But secondly, chronically ill and disabled people understand their abilities better than anybody. If there were something I could not do, I would be the first person to admit it, and I'm sure others with endometriosis feel the same. If I couldn't do my job, I would know it before you did. I trust that others know their bodies, too. (And it's my sincere belief that if someone can handle a campaign trail, they sure as hell can handle a political office. But I digress.)

Yes, there are low points. And yes, I have days when I can't function as well as I'd like. And there are times I have to tap out and take care of myself. (Why is that a bad thing, again?)

But I've never, ever let that affect my work or education. And I've never given myself excuses. And I've never left a job incomplete. But on a day when one of those critical armchair physicians was in bed with the sniffles, I was managing a couple hundred people at a work event with a heat wrap for pain, a Tramadol and healthy dose of resilience.

It's not up to you, a person on the sidelines, to decide for people with physical limitations what they're capable of doing. You don't deserve a list of their accomplishments or failures, just because a doctor stuck a label on their body. And no one owes you an explanation for every ache, pain or symptom that their illness produces.

Did your employer ask for your medical records when you got your job?

That's what worries me, though. I worry that the more we fuel stuff like this, the more that a person's health will take a spotlight. What if we start pushing out people with illnesses and disabilities from their jobs, simply because of a diagnosis? What if we take away their autonomy completely, and not just kind of, like we seem to be doing? What if we choose for that person where they can live, travel, do and enjoy? Why do the able-bodied get to speak for everyone else?

Instead of speculating about a person's health when you're not their doctor, why don't you ask yourself why you view people with disabilities and illnesses as inferior to you? What do you know about my life? What do you know about what I can do or can't do?

Because I'm sure if you filmed me 24/7 like a presidential candidate, you'll see me in pain. You'll see me stumble. And you'll see me struggle once in a while.

But above all, you'll see me overcome.

Now if you'll excuse me, I have two-and-a-half miles to run.

9:53 PM
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My Very Sleepy, Not-So Immune System

symptoms

Kylo Rennnn!

Ladies and gentlemen, let me tell you the story of my life as a sleepy person.

Sleep and I have always been friends. As a kid, when left to my own devices, I would sleep as late as my body would allow. In high school, I developed two personalities - my normal one and my early morning bitchy make-people-cry personality.

Endometriosis made me especially appreciate sleep, before I even knew I had this disease. During my period, it was the one and only place I didn't hurt, until a few years ago.

It's probably not surprising to most people that my sleep cycle went to shambles in college. Like most students, I stayed up very late, usually 1 a.m. or 2 a.m. on school nights and even later on weekends. I slept about five or six hours and spent the rest of the day cramming as much activity as possible into my awake hours.

But despite all that, I was functional. In my first year out of college, I was still functional. And then, right around the time I knew I was sick but didn't know I had endo, everything came to a screeching halt.

Sure, I expected my ability to survive on mere hours of rest to finally wear out. But I didn't expect to stumble through the middle of the day like a zombie. I didn't expect to sleep for eight, nine, ten hours and never feel rested. I definitely didn't expect to need a nap every day, fall asleep in social situations or skip out on events because I'm just way. too. tired.

Chronic pain and fatigue often go hand-in-hand. I knew that, and it makes sense. Your body spends all day fighting itself. So yeah, it's going to be exhausted at the end of the day.

But eventually, about three years ago, I got to the point where my life went like this: Wake up. Go to work. Come home from work. Nap. Wake up. Eat dinner. Nap. Wake up. Crawl into bed. Sleep. Repeat.

It wasn't a life. It was an existence ruled by pain and fatigue. I hardly had a life outside of it - just a hollowed-out husk, simply surviving.

Once I was diagnosed with endometriosis, had surgery, got my symptoms mostly under control and made some lifestyle changes, my pain improved and so did my fatigue. I thought I had my life back, and I was thrilled to no longer be ruled by a sleepy body.

That lasted for just a little while. And then, the pain crept back. And the fatigue.

And I noticed I needed to nap every day again. And I realized I had trouble remembering things. And I almost crashed my car because I fell asleep at the wheel.

I needed help. But overwhelmed by my other health needs, I put it off as long as I could. Instead, I supercharged my body on long, frequent road trips with caffeine, trail mix, loud music and everything in between. My husband could drive when we went somewhere together, but for my work trips, I was on my own. And I was too proud to call my boss and say, "Hi, I can't come to that event. I'm sleepy."

That "solution" wore off, too, eventually. Nothing worked anymore.

And before you ask, "Did you try-?" YES. I tried everything! I woke up early. I woke up late. I went to bed early. I went to bed late. I ate more. I ate less. I worked out more. I worked out less. I drank more caffeine. I drank none (BAD! BOOOO!)

I. tried. everything. And nothing changed.

I had to admit defeat, so I met up with my primary care practitioner. A blood test showed some slight vitamin deficiencies but nothing that could explain my all-encompassing sleepiness that was draining me in every way possible.

So she referred me for a sleep study.

(SPOILER ALERT: This blog post won't tell you the results of my study because I have no idea what they are yet. So if you're on the edge of your seat, anxious to know just how sleepy I am, you'll have to wait for the sequel.)

(You know. Just didn't want to disappoint you guys.)

So yeah, I first set up my consultation to determine whether I actually needed a sleep study, which I was pretty skeptical about. But I showed up early, as asked, which I thought was funny because uhh you're dealing with sleepy people.

If you're considering a sleep study, know this. YOU WILL HAVE MORE PAPERWORK THAN YOU EVER THOUGHT POSSIBLE OH MY GOD.

Don't go and tell me, "But Tracy, I had this one surgery/ER visit, and I had so much stuff to write out." NO. NO YOU DID NOT. YOU DID NOT HAVE SLEEP STUDY PAPERWORK.

Sleep study paperwork is like "Do you sleepwalk? Do you ever think about sleepwalking? Do you know what sleepwalking is? Have you ever met someone in your life who sleepwalks? If you could sleepwalk right now, where would you go? Seriously, that's it? You'd just go get pizza? Well, okay, I would have figured something more interesting than that, but hey, it's your sleepwalking..."

And as you fill out these pages, sleep techs will come by and take them out of your hands and bring them to your sleep doctor. And then they'll come back like "Did you fill out the 500 questions about dreams?" And you'll be like "NO, DAMMIT, I'M STILL ON CAT NAPS, GIVE ME A MINUTE, CHERYL."

Anyway, after my wrist fell off, I was escorted to the doctor's office. He reviewed my mountain of dead trees, and our conversation essentially went:

"Do you snore?"

No.
"Are you sure?"
Yes.
"...are you really sure?"
YES.

"Okay. You don't have sleep apnea. Maybe narcolepsy?"

"You should have a sleep study."

Great.

(He was actually more helpful than that, but this story is getting long.)

If you're not familiar with narcolepsy, it's when your brain can't adequately process sleep-wake cycles. So as a result, you have excessive daytime sleepiness and uncontrollable episodes of falling asleep in the day.

I chatted with a close friend who has narcolepsy about the condition, completely sure I didn't have it. I mean, I don't have sudden, overwhelming sleep attacks, in which I'm making breakfast and then all of the sudden on the floor.

But my friend doesn't either. What I learned is that sleep disorders, like narcolepsy, are a spectrum. Some people do have very serious and scary sleep attacks, in which they don't remember falling asleep. Other people, probably like me, are just really, really tired all the time.

I also learned that narcolepsy is sometimes thought of as an autoimmune disorder, like endometriosis often is. That was a lightbulb moment for me. Once you have one autoimmune disease, you tend to have, like, twenty. So maybe narcolepsy was a reasonable diagnosis, even though I hesitated to clear the sleep medicine office to pass along the sleep study to my insurance company.

But I was desperate. I was getting more and more tired, and I needed answers.

So two days before my wedding anniversary, I packed up a random assortment of things I need to be a Tracy into my college backpack and got ready for my sleep study.

Here is my "first day of school" photo:

Note the sad dog in the window...

My sleep study would involve sleeping a night at the office and then a narcolepsy study the entire day following.

I showed up, had an hour or two to myself and then, I was hooked up to a billion sensors and plugs and whatever else you call those things. There were a ton stuck to my head, which meant my hair was full of this sticky, white goop for an entire night, morning and afternoon. There were four on my legs, to monitor kicking, and two on my chest, to monitor my heart. Belts were wrapped around my chest and stomach to track breathing, and the worst were a few stuck to my chin to see what my mouth does while I sleep. I also had tubes up my nose. I was very pretty.

Perhaps unsurprisingly, I slept terribly that night. I usually do when I'm in hotels or somewhere I don't usually sleep, but I slept really badly. In fact, I'm pretty sure I got four hours of sleep, tops. At 5:30 a.m., the sleep techs who could listen to and see everything I was doing in my windowless room (creeeepy) woke me up.

Between that and the fact I wasn't wedged between my unmoving log of a sleeping husband and a 15-lb. dog who somehow takes up half the bed, I was already unsure how well this would assess my "normal" sleep. Nothing about that night was normal.

But this was just the beginning of my study. The next part is what I later described as "a special kind of torture."

I can't function without my morning routine: breakfast, coffee, shower. If I'm missing one of those things, I'm in disarray - completely uncomfortable, cranky and just unpleasant to be around.

Guess who didn't get two of those three essential things. Yep.

I figured I wouldn't get coffee, since that's pretty much cheating on your sleep study. But I couldn't shower, and I had goop all over my face and hair that kept the sensors attached to me. I could feel my face breaking out underneath layers of that stuff. I wanted to pull out the hair that was sticking to every part of my face and tangling with wires in every direction. Just thinking about this still makes me cringe. Why didn't I wait to grow out my pixie cut?! How did I survive three days of Bonnaroo?!

Anyway.

To assess narcolepsy, I had to take 15-20 minute naps every two hours. In those two hours, I could not fall asleep, or my goopy hair would be for naught. So I sat in an uncomfortable chair and tried to read Harry Potter, but that quickly made me drowsy. I pulled out my journal and started to write, until my penmanship looked like my American History 101 notes from falling-asleep-in-class Tracy.

I was reduced to watching the tiny TV in my room. And guys. Don't cry for me, because it already happened. But there was NO HGTV or Food Network.

I had about ten channels to choose from, all of them with the worst of morning TV. Like, worse than what I remember watching on my rare sick days from school. The best thing I watched all morning was Arthur (awww yeah) and in between whatever Good Morning America or Dr. Phil were going on about, I played on my phone and whined about how terrible sleep study life is. I couldn't call anyone because the sleep techs would hear my entire phone conversation, so I let Twitter hear my complaints.

As far as the sporadic torture naps went, I fell asleep in (I think) half of them. Maybe less. Definitely the first two. I know that being able to fall asleep at the drop of hat, which I've always bragged about being able to do, is a narcolepsy symptom. But it depends on whether or not your body enters REM sleep, which I'm not entirely sure I did.

At 1 p.m., I got Jimmy Johns. This is important to mention because I love JJ's.

This nap cycle went on until about 4 or 5 p.m. when the sleep study finally concluded. I was so desperate to be clean that as soon as all the sensors were untangled from my hair and body, I jumped into the tiny shower in my room with terrible water pressure and managed to bathe myself. I thanked my sleep techs and practically pranced out the door with joy.

My head had been pounding since 2 p.m. from lack of coffee. I only drink one cup a day, but as I said, it's my life fluid, and I don't understand people (i.e. my husband) who can live without it. And thank God Starbucks was across the street because I probably would have caused a state of emergency for my city, trying to get to the nearest source of caffeine.

"Yes, girl, you deserve me."

You'd think that taking a day off and spending the entire time sleeping would be a great experience, but NO. IT'S NOT. I HAD THIS DREAM AND I'M HERE TO SAY GET A NEW DREAM.

It's hard to say right now whether or not this bizarre episode in my health history was worth it, since I don't have my test results. But whatever they say, I'm happy to have at least eliminated a few things. While I'm still not sure I have a sleep disorder (maybe just chronic fatigue), I can at least move on to the next chapter of getting myself the help I need.

This is certainly the "dumbest" thing that's ever happened to my health (and I was run over by a car I was already in once... great story for another time.) I feel kind of stupid being like "What's wrong with me? Oh, I'm juss sleepy sometimes, that's all..."

But I know this is related to my pain and affects my overall health. And I know it's just yet another thing to add to my unending list of health-related issues and obligations. It's frustrating because sleep has always been a refuge to me. And now that I hurt while I sleep and can't even sleep properly, it's been a tough thing to deal with.

It's like "Oh, okay. I can't even have that one thing that my body was doing right. THANKS."

So I will hopefully have the results soon. And I will update with a much shorter blog post.

If you have endo or a similar condition and a sleep disorder, I would LOVE to talk to you about it. Please comment here or on my Facebook page.

10:54 PM
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Survival

emotional health

I wanted to write this for a few reasons. The first and most important one is for you, the woman with endometriosis or maybe another painful illness who doesn't want to keep fighting anymore. Who has grown tired of being tired. Who is worn from yet another day of waking up completely in pain.

But it's also for me. Because even though I don't feel that way right now, and even though I have faith in my ability to fight, and even though I still find joy in my life, every single person with this disease has wanted to, at one point or another, give up completely. And when I ultimately feel that way again - and I will - I want to remember how I felt before.

If chronic pain hasn't made you want to give up on your life, I don't think you're being honest with yourself.

The reason I chose to write this today is because this week, I've heard more than one woman say she's wanted to end her life over her endometriosis. It's definitely not the first time I've heard this. I've read heartbreaking stories of women who have committed suicide because of endometriosis, and I can't judge or fault them for wanting a way out of their pain.

I'm sometimes asked how I manage to stay positive despite my illness, which makes me laugh a little because I don't consider myself a particularly optimistic person. In fact, if you asked me to be honest about my own outlook with endometriosis, it's a little bleak. I expect to feel worse, as the disease progresses.

So what do you do when your disease gets the best of you, when all you can do is survive? How do you wake up every morning? How do you find the desire to keep going?

Here are a few things that have helped me. They might not be realities for you, but I hope something I say helps you.

---

Changing the demands I put on myself.

Of all the things I've had to accept with endometriosis (and I'm still learning), this has been the hardest. I'm a pretty ambitious person who likes to challenge herself, and there are times when my brain is ahead of my body. And as a young person, it's been difficult to not compare myself to other twenty-somethings who are traveling the world, running marathons, taking on non-traditional jobs and doing other things that I always thought I'd be doing right now.

But I started to understand that these expectations were only ones that I was putting on myself. No one else was asking me to be something I'm not. So I stopped trying to be.

I've found other means of self-fulfillment through music, my job, writing and advocacy. I've been more gentle with myself and focused on the things I can do, not the things I can't. I've celebrated my tiny victories - like waking up right when the alarm goes off or making a new recipe - so that I can work toward bigger victories.

I don't expect less out of myself. And I don't make excuses. But I refuse to spend my time wishing I could do things that I can't when there is so much I still can do.

Adapting my environment to work with me.

I've been blessed with a job I love that lets me work from home. This has helped me better cope with the pain and fatigue that limits my body, which have forced many women with endometriosis to quit their jobs to get at least some of their lives back. I know that working from home isn't a reality for a lot of women. But even outside of work, I've made efforts to make sure my environment is working with me, not against me.

I mentioned the bar chair I bought to help me cook and clean when endo pain makes it difficult to stand. I've also stockpiled things that comfort me and make me feel better on bad pain days, like blankets, pillows, socks and pajama pants. Oh, and cinnamon coffee and bath products.

But it's not just about objects or things that you can buy at a store. I've also made a point to get better at telling the people who love me what I need and how they can help. Before my illness, and still sometimes, I had trouble asking people to do things for me or get me something that I need. But I've found that most people want to help you. They want to love you and care for you and be there for you.

So let them. And don't force them to read your mind and figure it out on their own. Tell them how they can help and specific things they can do, right now, to make your life easier. Maybe it's a night in with a movie instead of a night out downtown. Maybe it's putting off a phone call another day. Whatever it is, show you love the people in your life by letting them love you.

Reclaiming my body through self-expression.

This has been a big thing for me lately. I've always valued self-expression, but since being diagnosed with endometriosis, it's been even more important.

When you feel like you're being rejected by your own body, it's hard to feel like you have ownership over it. And when so many standards and "rules" are imposed on us as women, it's even harder to feel like you have any say in what happens to your body at all.

In January, I decided I wanted a tattoo. (Hang on, Mom. I know you're reading this.) I haven't gotten it yet, but I know I want it. My anti-tattoo husband didn't quite understand its importance and why I felt so adamant about it. I didn't really either, and then it suddenly dawned on me one night.

"You know what?" I said. "I think it's so important to me because I want to reclaim my body. I want to do something, just because I want to do it. I want to prove that this body is mine."

Maybe your form of self-expression won't be as extreme as mine. Maybe you want to dye your hair the color you always wanted, or wear an outfit without worrying if others like it, or something else completely different. Or maybe, like me, you want to keep going to the gym on your good days, even though the bad days might soon be ahead.

Or maybe self-expression for you has nothing to do with your body. Maybe it's writing and music, which I spend time doing. Whatever it is, I encourage you to find a way to reclaim your identity - the one you had before "endometriosis" was even a word in your vocabulary,

Finding joy in the journey.

This is almost an impossible task, especially when you're feeling miserable. How do you find joy when your whole body feels like it's falling apart?

For me, it's been some of the things I've already mentioned. In other ways, it's been this blog. There have been many times I've wanted to give up writing here because I felt I was rambling into the internet void or that what I was doing didn't have an impact. But every time I feel that way, someone sends me a message to say they love my blog or they read my story on another website. And that encourages me and brings me joy.

I've found purpose and joy through endometriosis by telling my story, advocating for others with my illness and sharing why women's health is so important. My illness gave me something to work toward and another way to help people. And through that, I have value.

At the same time, I've found joy in the simple knowledge that better days, truly and honestly, are ahead. There is so much music left to discover. There are so many places to explore that I haven't seen. There are experiences to share with my husband, cute dogs to be a dog-mom to, goals to achieve that I don't even have yet... There is so much left to be done that only I can do.

Letting people carry my burden with me.

I talked about this a little bit earlier, but more specifically, I encourage you to be an endo sister to another woman with endometriosis. Chronic illness is already alienating and lonely enough on its own. When you're constantly fighting to be heard by doctors and insurance companies and everything in between, it's so valuable to simply have someone who gets it.

When I was first diagnosed with endometriosis, I immediately sought out a community. I don't think I'd feel nearly as confident and assured as I do now without these women. I don't have to explain myself. I don't have to apologize for symptoms I can't control. I don't feel the need to be anything except myself. And when you feel the need to make others around you feel comfortable about your disease, it's a relief to have a place where that's not necessary.

---

I know that there will always low points. There will be times I want to crawl into a hole and never come out again. There will be moments of anger, anxiety, despair and depression. I will run a gamut of emotions I didn't know I could feel, all because of endometriosis.

But I find comfort in the sun rises that tell me nothing is permanent. I find grace in a husband, family, friends and coworkers who love me. And I refuse to let endometriosis take away more than it already has.

And even if you don't have faith in yourself, please know that I do. Because I know women with endometriosis have incredible strength and are capable of amazing things. And as an endo sister, you are, too. And your fellow endo sisters will fight and support you, every step of the way.

You deserve that love. You deserve tomorrows. And the world deserves you.

7:18 PM
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Fatigue and the Fear of Being Found Out

symptoms

Oh, look! Is Tracy writing another blog post about being tired?

Yes. Yes I am. But I promise there's more to this one than the fact that I'm so bone-achingly exhausted lately.

This week, I decided to begin a whirlwind adventure with the health care system by posing the question: "HEY, DOCTORS. Why am I so unceasingly tired, and how are you going to fix it?"

My expectation of my care:

My reality is, well, not that. At least not yet! It's still early, so there's still time to beat a diagnosis out of me.

I started by attempting to meet with my ob/gyn. My first appointment was about two months ago or so, and I used my valuable lunch break to sit in a waiting room. I always try to be incredibly patient with doctors because I know I'm not their only patient and I'm definitely not their only patient with a chronic illness. (Hold up. Patient... patient? I GET IT.) But after sitting in an uncomfortable chair and listening to the worst soft rock imaginable for quite some time, I started to get a little restless.

Before I could get up and try to reschedule, one of the nurses came over to tell me that my ob/gyn was, at that moment, delivering a baby. UGH. BABIES. Ruining everything again!

Of course, I didn't put up a fuss because, I mean, you can't tell that baby to hang on for a few minutes while I complain about my uterus making me sleepy. Instead, I met with another nurse to reschedule and try again, oh, maybe next week.

"So she can see you next month at 8 a.m. And that's it. Until the next month."

"Haha! Good one! No."

Yeah, uhhh there were at least three reasons that wasn't going to work for me. Which leads me to wonder if anyone out there is just a gynecologist and not dealing with babies on the side, too. If such a rare creature exists, they're apparently not in my insurance network...

Anyway, I decided that another doctor could carry the diagnosis torch, so I called up my primary care doctor. Who, by the way, is a doll and a big departure from my previous PCP who was 1) convinced I had an infection I didn't have, 2) made me get my urine tested every. single. time. I visited her, and 3) was alarmed every time my vitals ever so slightly shifted.

My current PCP got me in pretty quickly and asked about my fatigue symptoms. Here is an overview, in case you missed my prior rantings on this topic.:

I've been tired for a really long time.
I can literally sleep anywhere, at any time, all the time.
I can't drive more than like a half hour to an hour without falling asleep.
I'm pretty sure I'm going to die because of the previous symptom.
I wake up in pain all over my body, and it's hard for me to even get out of bed.
I nap at least once a day because I can't function otherwise.
I can't remember anything, and my memory is usually a steel trap!
I don't feel rested after a full night's sleep, and it makes no difference if I wake up later/go to bed earlier, etc.

Most of these symptoms aren't new. Even before I knew I had endometriosis, I had trouble with staying awake. But in the last few months, these symptoms have worsened to a point where I finally said, "Okay. There has to be a way to fix this."

The biggest point of concern is the driving thing. I travel out of state pretty frequently and often by myself. I can usually stay awake if I have someone to talk to while I drive, but that's not always a possibility. And really, I shouldn't be falling asleep at the wheel, so...

This could be us, but a frog playing a banjo still wouldn't keep me awake.

Anyway, I was pretty convinced I had a thyroid issue or a vitamin insufficiency, the latter likely due to being vegetarian. (Oh-so noble, yet oh-so occasionally vitamin-deficient.) And a quick blood test said, "Eh, sort of. Not really."

No, my thyroid-hormone levels were fine. I could use a little more iron and vitamin D, yeah... But none of this was severe enough to explain why I was so exhausted.

And so, my PCP passed on the diagnosis torch to the second runner-up...

(I don't know what they're really called. So he will now be called Sleep Doctor.)

PSA: If you ever schedule a consultation for a sleep study, get there as early as possible. Like, pack a lunch. Reroute your mail to the doctor's office. Sell your house. You will have so. much. paperwork. beyond anything you've ever experienced. You are not prepared. You have no idea.

After I crawled from the mound of dead tree, Sleep Doctor called me in to hear a replay of my symptoms. He gave me a look that I now know as the "Pffft I don't know, but let's try this" face.

"Maybe you have narcolepsy."

(gif of me shrugging, throwing my hands out to the side and saying "Sure.")

To be honest, I'm not convinced. A good friend of mine has narcolepsy. If you're not familiar with it, basically, it means your brain can't process your sleep cycles normally. People with this condition experience excessive daytime tiredness and then sudden attacks of sleep they can't control. Sure, I have that. But I don't really have the night insomnia, sudden loss of muscle function or hallucinations that come with it.

Some people also think narcolepsy is an autoimmune disorder, which would make perfect since with endometriosis, given that you're at a higher risk for autoimmune disorders. And once you have one, you have like five.

But Sleep Doctor, who would like to diagnosis me with a sleep disorder, ordered me a sleep study. I'm currently waiting to hear back from my insurance company to find out if they'll cover this and how much it will cost to find out if this is my true self:

"I'm awaaaaaake! I'm not awake."

***

This leads to part two of my blog post: my fear of being "found out." I've tied it to this episode because I can no longer hide the fact that my illness is affecting my daily life.

Up until now, I've done a fairly good job of saving my painful flare-ups and endless symptoms for my home, my close friends and this blog. But as I begin to skip out on more and more social events, and as I schedule more doctor appointments, and now that I've had a conversation that went, "I cannot drive that far. I'm afraid I will die." there's no denying that my illness really is in it for the long-haul.

I knew that. At least, I was told that. But the more my body makes it agonizingly clear that it's not going to play nice, the more I'm terrified that people will "find me out."

What do I mean by that?

One thing I frequently hear that both comforts and makes me laugh is that I'm very "optimistic" and "brave" in the face of my condition. Although I know these people mean the best, I sometimes wonder if what they're really saying is "Wow, you manage to be so normal, despite the face that you have a chronic pain condition."

My ability to adapt and hide my illness gets me gold stars and nice words that not everyone with a chronic illness or a disability gets. The fact that I can get myself together enough to stay out late with my friends most of the time means that I'm doing something right with my condition.

But when everyone finds out that, oh shit, Tracy really is sick, then what? What will I lose? Who will I lose? That's what my fear of being "found out" is.

And what really messes with me is that these symptoms and my feelings are so inconsistent. When I can muster up enough energy and strength to make it to the gym or when I celebrate exercise as a way to manage my condition, I feel like a fraud. When I go days without leaving my house or when I choose sleep over the treadmill, I feel like a liar.

I know that both existences are my reality. But will other people understand that?

It's easy to tell me not to worry about what other people think. But it's honestly impossible, no matter how much you try to tell me that you don't care about others' opinions. I do care.

What I worry most about being "found out" is that people won't get the whole story. I'm not incapable of doing things. It's just going to take me another route to get it done. But I will get it done, perfectly and on time! I just may need to have you take the steering wheel, or I may have to sit in a chair while I cook dinner, or I may have to work from home. But I'm entirely, 100 percent capable.

It's a fear that I think everyone with a chronic illness faces. And it's one that grows every time I have to chase a diagnosis or dig around for a new treatment. And I'm so incredibly grateful for the supportive family members and friends and coworkers who have helped and understood me, every step of my disease.

But I'm always, always going to have this fear.

4:03 PM
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