Endometriosis Awareness | Life After Diagnosis
Nothing can prepare you for the idea that in a single day, your body can change and life will be irreversibly worse. Click here to donate to endometriosis research.
Nothing can prepare you for the idea that in a single day, your body can change and life will be irreversibly worse. It’s too frightening, too depressing, too taboo. Parents don’t want to scare their children, doctors don’t want to spike patient anxieties, and we all want to lie to ourselves, blindly believing we’ll always be healthy. I’ve learned the hard way - three times now - that sometimes, life as you know it will end.
March is Endometriosis Awareness Month and I felt compelled to write something about the toll that chronic illness can have on a person. Selfishly, I need somewhere to vent but I also hope that this helps scare someone into keeping a close eye on their health. It is a finite resource and late 20s is a crucial time to start on your preventative care.
Two weeks post-op on my first outdoor excursion. In this image, I have six broken bones and was surviving on Dilaudid.
As some of you know, I was diagnosed with an uncommon bone deformity in my legs four years ago and underwent major, invasive surgery in hopes of correcting it. Blow Number One was that diagnosis. I was 23, very active, and never once considered that I could become disabled out of nowhere. The promise of a swift recovery was impressed upon me over and over. I accepted it with youthful optimism; a year from now, I’ll be better. A year from now, I will walk again and rock climb again and my legs will be even better than they were before.
Blow Number Two came the elusive year after surgery when my doctors admitted that the surgery hadn’t done what they hoped. Through excruciating pain, I’d relearned the basics of walking but to everyone’s surprise, hit a plateau. I was impatient, thinking that there had to be an easy solution. After two more surgeries to remove a handful of the eighteen screws in my body, my surgeon told me short of another extreme, invasive procedure that probably wouldn’t make much difference, we’d reached the surgical end of the line. I went through two straight years of physical therapy, only to have my therapist say we’d done all we could reasonably do. I was 26, newlywed with a burgeoning art career, and should have been in a happy stage of life. Instead, I spent weeks into months sobbing over my failed surgeries, trying to wrap my head around the idea that I was officially designated as permanently disabled.
It was becoming apparent that I wasn’t coping, so I got myself a therapist specialized in chronic pain and she diagnosed me with medical PTSd. With her, I started to heal and accept my new life circumstance. I was finally issued the permanent disability parking placard I’d fought for since the very beginning of my health ordeal. I found an adaptive climbing group, started especially for those of us with disabilities. Things were looking up and I was finding ways to integrate the things I used to love back into my life. More importantly, I was learning to cope in healthy ways.
I started a comic series with the intent of giving me a space to process. Little did I know my whole body would become traitorous.
As the seasons shifted, so did my health. On Thanksgiving of 2018, I was curled up in agony, trying to decide if I should go to the ER for serious abdominal pain that had been beating me down for a month. It reached a crescendo that evening, but due to the medical trauma from my very first surgery, I knew better than to expect reasonable medical care on a holiday. My primary care doctor had already tested me for all manner of GI and food related intolerances. I’d given up gluten, broken my diet all the way down, and was living on depressing, low FODMAP approved foods. And yet, everything - especially my fatigue - had only gotten worse. I was recently 27, miserable, and reasonably certain I was headed for literal death.
Getting reeeeeally tired of these hospital bracelets
I was desperate for an answer and begged for an ultrasound, finally managing to articulate that it felt like something was inside my body that shouldn’t be. I was correct and within the week - right before Christmas - I had a lemon sized cyst removed from inside of my left ovary. (55mm, for the curious.) My OBGYN said the ovary was so swollen, she could see it from the outside of my body. I went into surgery thinking excellent, onward to recovery. However, I left with Blow Number Three; the soul-crushing label of endometriosis.
Over the years, I’d wondered many times if I perhaps had endo. I’d even brought it up with a doctor or two, who told me that my catastrophic menstrual cramps were just part of the uterus-having experience. My current doctor was horrified when I told her that I have to shut it all down and stay in bed for the first three days of every single period. She was more horrified when she realized I’d been doing that for fifteen years and no one had ever helped me.
The hope was that my symptoms would decrease, at least for the time being, once my massive cyst (which we named Kevin) was fully excised. The surgeon said she saw no further endo and they hoped I’d have a couple of pain-free years before having to tackle this again. Instead, I had to endure a brutal abdominal surgery recovery and the symptoms never so much as decreased. I’ve been in severe pain every single day since mid-October and there’s no end in sight. I’m nearing 28, I’m not coping, and it feels like I’m just biding time until I get hit with Blow Number Four.
I’ve written this to occupy myself while I wait to hear back on yesterday’s ultrasound. Writing has always helped stave off the anxiety, but I have so many questions that keep creeping in. Has Kevin the Cyst regenerated? Are there more of them? Do I name them Kevin too or do they deserve their own names? How much endo was missed during the excision? Why did they miss it in the first place? What if none of this is even related to endo and my symptoms remain a mystery? What if it’s cancer? Oh god, what if it’s cancer? What if I’m in pain for the rest of my life? What happens when I can’t mentally handle the pain anymore? Why does this keep happening to me?
Nothing makes it easier to hear you have yet another incurable condition (especially one that is so difficult to control). Hours and hours of research have left me feeling darker and more hopeless about my future. The prospect of yet another surgery looms overhead. I’m exhausted, everything hurts, and it’s impossible to keep up with the demands of existence when an automatic 60% of my daily energy is siphoned into ignoring the ever-present pain in my left side. I long for the days when I was active and social, young and pretty, or even for the original post-surgery days when I simply wasn’t so isolated. By the fifth surgery, people assume you’re just used to it and don’t visit anymore. They’re right - I am used to it but I never want to be used to feeling so lonely. Life has become a carousel of four doctor's appointments a week, medications that help me with nothing, and the unending stress of being a burden on those I love.
I intended to end this on a more optimistic note about self care, but the truth is that I’m sick of deluding myself into believing that one day, I won’t be sick. Maybe at this point, self care involves telling yourself the truth about your situation and being transparent with others about your struggle.
As I previously stated, endometriosis is incurable, difficult to manage, and severely under-researched. I am filled with rage towards a system that does not value women or reproductive disease. If you feel so compelled, you can donate to endometriosis research here.
Nothing can prepare you for the idea that even after you’ve hit what you feel must be rock bottom, life can still change and once again, become irreversibly worse.
Honeymoon | Amsterdam, NL
On the second stop of our honeymoon, we explore the magical canal streets of Amsterdam.
AMSTERDAM, NETHERLANDS
The second stop on our trip was Amsterdam, a city neither of us had been to before. Being the middle of March, it was still chilly and hadn’t yet flooded with tourists (as we were told by every local we spoke to). One of the reasons I love to travel is to spot architecture. God, I love a good building. We were in awe of the gorgeous canals and the variety of facades, not to mention the efficiency with which Amsterdam streets flow. It was a truly unique experience to wander through town at our own pace, uninterrupted by stop lights. With my legs being what they are, I obviously can’t ride a bike. I’m proud to say I was not run over by one, either.
Turns out, I’m a huge fan of Dutch food. I’d gorge myself on bitterballen [pictured below] any day of the week. Deep fried potato? Yes please.
The couple of days we spent in Amsterdam were not nearly enough and I can’t wait to go back.
Honeymoon | Edinburgh, UK
Traveling back to where we met on the first stop of our honeymoon.
EDINBURGH, SCOTLAND
For the uninitiated, Alex and I met while studying abroad at The University of Edinburgh all the way back in 2011. At the time, we were bleary eyed literature students who desperately wanted an escape from our everyday lives. I think it’s safe to say that in each other, we found something new and exciting - a partner whose ideal life paralleled with our own. Eight years, five homes, and one courthouse elopement later, we decided we should return to the place where everything began. Our honeymoon started in Edinburgh.
We spent a day wandering around the city, hitting our favorite haunts, and attempting to take our own wedding photos. Long story short, I had accidentally changed a setting in my camera that I didn’t find until it was too late and most (luckily, not all) of the photos from that day are in a tiiiiiiiiny resolution. We live and learn, I guess.
Alex and I took my favorite wedding photo in the same spot where we took one of our very first photos together. Calton Hill Cemetery will forever be one of my favorite spots.
Since we didn’t have a wedding, we decided to send postcards to everyone that would’ve been invited to a hypothetical shindig. Each postcard was thoughtfully chosen for each person, which was a super fun puzzle to solve for me. Writing them out also gave us a great excuse to spend some time sitting in every coffee shop we saw.
Despite my severe jetlag-induced nausea, I found everything I’d hoped to find in Edinburgh - familiar streets, grey skies, and new memories in a favorite place with my favorite person.
I miss you already, Edinburgh.
A Woman Without a Country | On Multi-Ethnicity
Thoughts on identity from the multi-ethnical child of a Mexican immigrant in dystopian America.
As we all know, this election cycle has been unavoidable and exhausting. For all of us, there has been at least one talking point that hits deeply. Without getting into the political nitty gritty of it all, I want to talk about some of what's been brought up for me. This is bound to be long, but bear with me.
I am Mexican. My father is (still) a Mexican national, born in the southern province of Tabasco. Growing up, that heritage was a huge part of my day-to-day life. I called my grandmother abuelita and loved reading aloud to her whenever she asked me to teach her more English. She was disappointed when I didn’t want a quinceañera. My dad's side of the family spoke primarily Spanish at get-togethers and they started teaching it to me at the same time I was learning English. I loved pan dulce and hated molé and ate homemade tamales with wild abandon. Our holidays followed Hispanic custom (which was particularly annoying when we wouldn't open presents on Christmas Eve until midnight). I grew up as a proud Hispanic child in a heavily Mexican populated town. I never questioned this part of my identity.
As I got older, my abuela got sick. The family stopped seeing each other as frequently. The tío who hosted family gatherings had an accident, so the mantle was passed on to my mother - whose family hails from the Midwest. The Mexican customs faded. Dad stopped speaking Spanish at home. My ability to speak it faded. My younger brothers were raised with significantly less Hispanic influence. However, it wasn't until I went to a Mexican majority high school that I felt uncomfortable with myself. People laughed when I told them that I, too, was Mexican. I look white, so I couldn't possibly be Hispanic. Hell. My full blooded Mexican father looks as white as I do. I can read Spanish proficiently, but my speaking is poor. What does that count for in the scheme of things?
I went from being a Mexican child raised in a Hispanic family to being too white to be Mexican (yet simultaneously too Mexican to be white). I'm a woman without a culture and this election has only pushed the divide further. When Trump talks about immigration, about what brutes and losers my people are, I feel the hurt in my bones. I worry for my father, who is in the process of obtaining his citizenship. And on a less societally important level, I'm worried that I'm not involved enough in my heritage to feel as personally attacked as I do.
This year has shown me that it's time to reconnect. I want to know more about my family. I want to travel to my dad's childhood home and see where we came from. I want to push my language skills beyond Spanish 2. I’m already in the process of obtaining dual citizenship (and when people ask me why, I know that it stems from emotionally needing that piece of paper to prove that, yes, I am Mexican). I’m going to a Dia de Los Muertos celebration as well as a Halloween party this year (and yes, I’m aware that it isn’t Mexican Halloween). It's important that I don't feel so uncomfortable with incorporating my culture into my life that I feel like I'm appropriating it.
With all of this in mind, no matter which way the election falls, I will be doing my best to find who I am within the context of my ancestry. You'll be seeing more of this in my artwork going forward and I hope that you'll follow along with me on this journey.
To quote Neruda (who I will be reading substantially more from as I start learning Spanish again), "Algún día en cualquier parte, en cualquier lugar indefectiblemente té encontrarás a ti mismo, y ésa, sólo ésa, puede ser la más feliz o las más amarga de tus horas."
Translated: Someday, somewhere - anywhere, unfailingly, you'll find yourself, and that, and only that, can be the happiest or bitterest hour of your life.
My dad is that little one in the middle with the cool guy eyebrow thing going on
My adorable little abuela
My father’s unenthused face looks exactly the same now as it did when he wore suspenders. Mid-1950s
The Miserable Malalignment | An Uncommon Diagnosis
After major surgery, it’s difficult to respond to the myriad text messages from well-meaning loved ones. This brief overview of my situation will have to suffice for the time being.
Here is an x-ray pre-surgery. The orange line is for reference as to where my bones should be.
As is expected post an extensive surgery, I've had a lot of people asking how I'm holding up. I love you all and really appreciate the concern. Also as is expected post surgery, I have been way too out of it to respond much. I figured I would just do a blanket update here so I don't have to repeat myself a hundred times.
Short recap: I have a condition called Miserable Malalignment. It's fairly uncommon, to the point where the majority of my nurses didn't know what it was. Nutshelled, it means that the bones in my legs were rotated in opposite directions, leaving none of my joints stacked, my knees on the inside of my legs, and me legally disabled in the state of Massachusetts. I made the decision last September to get a surgery so intense, it gave me a panic attack the first time I heard what it was. The surgery is called a rotational osteotomy and I needed four of them at once.
I won't lie, last week was actual hell. People kept telling me that it wouldn't be as bad as it was in my head but the truth of it was so, so much worse than anything I could have imagined. I'm doing my best to forget the hospital experience as quickly as I can. The trauma is severe.
The surgery I had is called a rotational osteotomy, which means they break the bone to rotate it and insert a metal rod. I had four - one per femur and per tibia/fibula on each leg - simultaneously. That means six concurrent broken bones. Needless to say, it was an overwhelming and extensive surgery.
I have a short list of things I learned during my six days in Loma Linda.
Don't ever get surgery during a holiday weekend. The doctors you need won't be accessible, there will be very few nurses, and it will be impossible to get your medication in a timely manner.
Make sure your nurses are 100% aware of what surgery you got. Otherwise, don't let them move your legs.
When no one believes you that you're resistant to painkillers, it will take no less than four angry adults (not including you) to get them to listen to you.
When they give you a level 0-10 pain scale, it is possible to reach a 15. It is also possible for your nurse to do nothing and leave you there. Twice. (Resulting in one nurse being written up.)
But then, when you find the one nurse that makes everything seem a little more okay, you'll be really thankful (and feel guilty) that she works twelve hour shifts.
Special thanks to Katie, who mommed me so hard. Dom, who provides impeccable moral support. Brian and Brittany, who drove so far not once but twice. Melissa, who came all the way from Arizona to love me. Vince, who brought flowers, laughs, and didn't mind that I almost immediately fell asleep. Ben and Charly, for sending the most beautiful flowers I've ever gotten. Emily, Brittany, the Santos, and Jay/Eugene/Kat, for the cards and care packages. My inexhaustible parents, for sitting up with me all night, bringing me smoothies, being my advocates and warriors. And Alex, the love of my life, who has gone so far beyond the call of duty, I will never be able to make it up to him. I couldn't have made it through any of this without him softly coaching me through some of the most humiliating moments I can even imagine.
Flowers from Ben and Charly.
Doped as hell, day 2.
The only thing I saw for six days.
My situation for the next several weeks. I can barely stand and walking isn't really feasible until the swelling goes down.
Because my situation sounds like a Series of Unfortunate Events book (which is one of my favorite book series), my amazing mother drew this fake book cover and sent it to Lemony Snicket himself. He sent me this note back, signed as "representative Daniel Handler."
I'm looking at many months of minimal movement and a lot of pain, hoping that my knees will bend one of these days and eventually relearning to walk. Since all my muscles, tendons, and skin are in different places, lord only knows when the pain will subside. Fingers crossed that it's sooner rather than later.
Anyone nearby enough to visit, I would love visitors basically whenever. I have a lot of time to kill.
On Surviving Winter | Snowpocalypse 2015
Keeping a record of life through Boston’s Snowpocalypse 2k15.
Being a native Californian, I'm eternally unprepared for winter and at the risk of sounding overdramatic, I am surprised I made it through this year in one piece. Boston was hit by blizzards at least once, if not twice, a week for over a month. We broke six feet of snow and set the record for most snowfall in one winter in the history of the city. It was a miserable, brutal series of months and maybe someday, we'll look back and laugh at Snowpocalypse 2k15. Speaking for myself, I'm still trying to shake off the PTSD. I'll be afraid to leave the house without my heavy-duty, dual layer coat for at least another month.
But for all of the bad, I was lucky enough to have some wonderful people trapped with me in the nightmare hellscape. My brothers and good friend were brave enough to venture from Southern California to visit me, plus I acquired a core group of folks I loved enough to get repeatedly snowed in with. I'm talking three days at a time, people. After that, I'm confident that we could make it through an actual apocalypse together.
Maybe it's just the hint of sun on the horizon, but I've come out of winter feeling rather lucky.
2014 | A Year in Review
A look back through the year, just in time for a new one.
Every year, I write an essay of repentance for my failures, thankfulness for the good moments, and defiance toward the bad. I draw resolutions from a hat and swear to adhere this time around. I'll take more photos, practice guitar, read all the books I impulse-bought but didn't read. Inevitably, I forget within the week.
For the first time in my adult life, I ended the year without a good or bad classification. I've always conformed to the binary but 2014 has hovered steadily above ground zero. For each negative, there's been a positive and for each step forward, there have been two back. It's been a year of stability - or stagnation, depending on the day you ask me.
Despite everything, I can't deny it's been a learning process and I'd like to keep a record for Next Year Me. Maybe I'll retain lessons longer than aspirations. I always did learn better the hard way.
Patience is a virtue I wasn't born with but, my god, she can be taught! Some things are worth waiting for. Some waiting may last for years. Some waiting is for Godot.
Hard work eventually pays off if you let it. But sometimes you have to pay it forward to yourself, buy that plane ticket, and trust that you can handle a few months of four jobs and no sleep.
Living away from home doesn't mean giving up your past life. It just requires adapting to a particular sort of schizophrenia.
Running away won't solve your problems, but it will give you some perspective. Maybe that's all you need to solve them yourself when you return.
It's okay to admit defeat when you've been banging your head against a wall for a year. You're concussed, you're over it, and any further detriment is likely to be permanent. Stand down, soldier. There are better things than these.
The best way to cure a fear of solitude is to spend time on your own. A year of alone time under my belt and, hey, it's not so bad. I'm verging on enjoying my own company. Almost.
You can't predict everything. Sometimes, a silly childhood dream slaps you in the face and you realize six months later that, god, I should have been doing this the whole time. Now it's just about playing catch-up with the years of missed practice.
I've learned to write in cursive, count in Chinese and Turkish, sing in front of people without panicking, and manage a feature film production. However, I messed up grilled cheese last week. I may never learn to cook.
Instead of declaring resolutions I'll immediately ignore, I'll just hope 2015 contains a little more adventure and a little less overthinking.
