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.
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
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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