Tag: hysterectomy

Pre-Race Small Joys

This weekend, I will run my first half marathon since 2018. The last half marathon was 6 days before my first endometriosis surgery. While visiting friends to run the St. Luke’s Half, I spent as much of the day before the half marathon as I could curled up on the air mattress, in agony. I wasn’t sure if I would even be able to finish the race. I did, and the last few miles were full of scream-whispering “f***” and taking a beer from a spectator at mile 11, then immediately regretting it. Will I ever take a beer from a stranger again post-2020?!

A year ago I was prepping to virtually interview Ellen Bass after getting news that I would be able to have a surgery I desperately needed with 5 business days to prepare. I do not recommend such a short amount of time to prepare to be out of work for 4 weeks in a short span of time. Why was I having surgery last minute? The scheduled surgery was cancelled due to COVID-19. So many of us in the chronic illness community lost access to care and procedures during the pandemic. So many of us lost more than the ability to travel.

Here we are in 2021, in a  different place. The race is very small, and I filled out the symptom questionnaire earlier today. I have A, B, and C goals for Sunday. No matter what, because as Nick reminded me, conditions always play a factor—I’ve come a long way from the pre-hysterectomy-and-second-excision-surgery crippling pain. I finished up mile repeats in my last big workout, cruising within 30 seconds of a mile time trial in December. As the greats say, LFG.

In honor of all the physical and emotional work I’ve done to live with endometriosis, here are some things I’m proud of in this training cycle:

  • I adjusted training runs as needed. I haven’t had pelvic pain since the excision and hysterectomy in May 2020, but I still follow my hormonal cues and adjust my intensity depending on if I am in my menstrual, follicular, ovulation, or luteal phase. Alissa Vitti and Dr. Stacey Sims can teach you a ton about exercise and your hormonal cycle. My acupuncturist, pelvic floor physical therapist, and orthopedic physical therapist have all been yelling at me about this for years.
  • I was able to note small joys in most workouts: the park blooming! Daffodil season! Feeling stronger in the recovery reps during speed workouts! So many doggos! There were definitely still runs with an “ughhhhhh”, so I put on Kesha/Lil Nas X/K Flay/etc. and just did it. Getting in some long runs with my friend Maura helped too.
  • Caring much less about how much faster other people are in easy paces. I generally run at the “high” end of my easy pace. Honestly, I still have concerns about fatigue and my hormonal balance, so I’ve accepted that I’m not going to crush my paces every time, especially on easy runs. The easy runs exist to build muscular endurance. I enjoyed them!

Books I’m thinking about/recently read:

  • One Life by Megan Rapinoe
  • Black Widow: A Sad-Funny Journey Through Grief for People Who Normally Avoid Books with Words Like “Journey” in the Title by Leslie Gray Streeter

Stay sweaty and glittery. Black Lives Matter.

Demons In Your Foot

With an acute injury or illness, there isn’t the this is your fault judgement that comes with chronic illness. No one says there are demons in your foot if it’s broken. No one says you deserve this. No one says that maybe if you did more yoga, ate kale, or got pregnant, you’d be cured of a broken bone. Rather, the healthcare team sets out with the goal: how do we fix this?

Having a chronic illness is the difference between walking into a doctor’s office and showing that something is visibly broken, versus walking into a doctor’s office with a list of symptoms that are deemed invisible. I’d say the effects of brain fog and pain aren’t invisible, but what do I know, I just live with them.

I’ve talked with quite a few people over the last month about their own endometriosis diagnoses. We’ve talked about what it means, and what they can do, where to find resources. Knowing that I put my story out there for people as a resource, receiving those messages still brings a wave of emotions. I know because I did (do) this to other people in the community too. You reach out to people when the healthcare system fails to give you answers. We’re speaking up at the doctor and being dismissed, so we go to each other.

I had so little information about returning to running after a hysterectomy. If you believe Google, your spine shrinks, you can literally do nothing fun ever again, and you become extremely unattractive overnight. This kind of information is on gynecological websites!! Luckily, I have a knowledgeable pelvic floor physical therapist. She kept me in check—that it would be a long recovery road, but there is no reason I wouldn’t be able to come back stronger.

February running was rough. I was also getting into contortion training, and because I never know my limits, I ended up freaking out my psoas muscles on both sides from overstretching. Every step hurt for most of the month. Every. Single. Step. I was terrified at first, then after figuring out more of what I did to myself (woops) with my orthopedic physical therapist, I accepted that I overdid it and needed to rest. I ran a bit over 60 miles the month of February, going out for short runs to keep moving as I healed. I was told that as long as I felt better after running, this was okay to continue.

March looked much better. Taking it easy worked. I’m so used to never-ending chronic conditions, with little hope. I told a friend in February that I didn’t even know how to address acute injuries anymore after thinking I broke my toe by dropping a glass candle on it (I went to urgent care and it was just badly bruised). The snowiest days overlapped with the worst of the psoas and toe pain, and for a bit I felt like I would have this pain FOREVER. Thank goodness for time. Honestly, I was shocked that rest WORKED.

I felt well enough to time trial the Shamrock 5k on March 13. I had some strong workouts in the bank from January, and 10 months after surgery, I was itching to test myself. I see it as a big moment of personal growth to go out to “race,” knowing it wasn’t going to be a personal record. My run coach, Nick, and I met to warmup, then he paced me. My goal was to go out strong, then keep descending. I managed to do just that on a breezy day on the Carroll Park 800, splitting 7:22, 7:15, 6:57, and 7:11 for the last 0.1. The first 2 miles felt quite controlled, and I fought in the last mile. Having an extremely fast pacer does help, but I had to stay focused on the surprising windy loop without the adrenaline of a race situation.

The in-person Shamrock 5k is notoriously fast. In my age group, the top 3 are all usually under 20 minutes—a virtual prize was not on my mind. Monday after the time trial, I received an email from a colleague that also runs, congratulating me. In a virtual year, I finished third in my age group. I immediately stared minimizing it, saying things like “well this will be the only year I do well at the Shamrock!” Then I stepped back. We are in multiple pandemics. I had major surgery 10 months ago. No matter what, this is an achievement to celebrate during an extremely difficult year. Anyway—as long as I can, I’m working toward faster and consistent running.

Now I’m in the final month of preparing for a half marathon. Again, I am excited and terrified to see what happens, even though I’m thinking of this as a confidence booster before a fall buildup. As I can consistently train because I’m not losing buckets of blood and overcome with full body pain, I keep seeing small improvements every day in pace and recovery. My mindset has changed, therapy is working!

The timing of my last read was perfect too—Meb Keflezighi’s 26 Marathons. He focuses on the training, the process, and running a smart race for the conditions you are in. The joy he feels in running shines throughout the book, and he reminds the reader every page that what matters in running is what you learn about yourself. As races restart and I chase down new goals, I keep thinking about his words: “I learned that giving your best even when you’re not at your best can provide insight into what’s possible when you’re on top of your game.”

Books I’m thinking about/recently read:

  • 26 Marathons by Meb Keflezighi
  • The Vanishing Half by Brit Bennett

Stay sweaty and glittery. Black Lives Matter.

You Made Her Like That

I remember reading some passages in a book that did a hilarious bit about philosophers, but now I can’t remember the source. The source was supposed to be an analogy for things people thought they knew, but didn’t, and were instead clinging to a useless ideal. It might have been Taylor Swift related—she’s my age yet the queen of reinventing and new perspectives in her career. No. Now that I’ve been revising, it was in Jenny Offill’s Weather.

How about we start here. A few weeks ago, a friend posted about National Eating Disorder Awareness Month in a way that helped me articulate some feelings that have been brewing in my mind. She asked people to think about how they perceive eating disorders. Frustrations I have about chronic illness clicked. I am not looking for you to say that I’m a warrior, or that this journey has made me strong. Having a chronic illness isn’t a special superpower. There are other, less devastating, ways to build resilience. How about something that has an end date? Instead, I want you to listen and think about your world view.

I’m looking at you to reflect on how you understand chronic disability, chronic illness. Think about how it shows up in the workplace, your social life, your response to the pandemic. Read 17 Facts About Endometriosis That Show Just How Horrific This Disease Is and think about what a good day with a chronic condition is like.

I want simple things. I almost wrote girly things, but that’s a way to soften and gender the language. I’m not really interested in softening when women have had to do that for centuries. So I want these things: healthcare coverage. Job security. A step back from the toxicity of the grind culture. Will anyone log off their work email? Sympathy is useless without systemic change.

Many advocates are doing an incredible job educating about endometriosis this month. I am thankful for them. They are the people that taught me where to look for care. Advocates teach people how to speak in a doctor’s office, and to trust that you can fire a doctor if the doctor isn’t listening. Speaking of moxie, the only part of Moxie I loved was how Vivian’s nomination for “most likely to follow the rules” spurred a zine-lead revolution.

Solidarity in the endometriosis community felt forced early in my journey. Most of what I saw was about fertility, rather than quality of life. Years of pain led me to disassociate from my uterus. I don’t associate fertility with womanhood. I just—have a meat sack and I can do things with it when I’m relatively well, like running and circus arts. Long hair and cat eyes are fun too. If you spend some time thinking about your gender performance, you may notice biology and gender are not truly connected.

More people are getting behind the queer community, behind the fact that equitable access doesn’t exist until everyone is involved. More people are yelling that ever about a disease that takes on average 8 years for diagnosis. More people are yelling that bipoc patients face greater barriers from systemic racism in medicine. I am so grateful for Cori Smith, Lara Parker, @endoqueer, @crampedstyleblog, @beelynnnyc, @endo_black, @southasianwarriors, and more.

Books I’m thinking about/recently read:

  • Weather by Jenny Offill
  • Stunt by Saida Agostini
  • Fake Like Me by Barbara Bourland

Stay sweaty and glittery. Black Lives Matter.

Dandelion Vibes

I had a dream in which the walls of my house were literally on fire. In the dream, a neighbor, someone I knew but didn’t recognize, said flamethrowers were the hot new trend in creating the just right type of distress. Dumpster fire memes are rampant (and I have shared many), yet somehow, 2020 the worst year I’ve had. Yes, that’s a privilege: I still have a job, my house, so far everyone I know that has had COVID19 has survived.

I’m reading The Happiness Project by Gretchen Rubin for an event with Discover Charm City Gal Pal Book Club. One of principles is about revisiting joy. This week, I cleared out my phone photos and had a selection developed. I explored the outdoors, managed to run 900+ miles even though I took off three months to heal from surgery, protested, found quiet in the everyday. I even developed the screenshots from Zoom gatherings. How else will we remember what happened digitally? A tangible keepsake speaks.

I’ve done work reorganizing my space this year too: painting a door, setting up an office and handstand space. This also involved getting rid of things, but not everything. A few things have lingered. A dandelion has been growing in the crack outside my basement window. It started growing after deep freeze, after snow. I can’t bring myself to pull it. I think of “Dandelion Insomnia” by Ada Limón.

It’s vicious,
made for a time that requires tenacity, a way
of remaking the toughest self while everyone
else is asleep.

Another reason for the dandelion tattoo I have been contemplating. I drank up Dandelion Wine by Ray Bradbury when I read it a decade ago, and the poem from Limón’s book is getting almost more rotation in my mind than my other favorite of hers, Field Bling. I think about requiring tenacity. In 10th grade, I used “tenacious” as the one word to describe myself. Why shouldn’t it be the word of 2020? We’re also in it together in changing the systems we’ve seen fail in 2020.

Thinking about the weed flower brings me to my favorite quote from Dandelion Wine: “I mustn’t forget, I’m alive, I know I’m alive, I mustn’t forget it tonight or tomorrow or the day after that.” The alive-ness, the feeling that the world is still there—coupled with Limón’s ecstasy in spite of it all, dandelions are the real winners, aren’t they? I’m taking the vibe into 2021.

Books I’m thinking about/recently read:

  • The Carrying by Ada Limón
  • I Hold a Wolf by the Ears by Laura van den Berg
  • Buy Yourself the F*cking Lilies by Tara Schuster
  • The Understudy’s Handbook by Steven Leyva

Stay sweaty and glittery. Black Lives Matter.

Always Adapting

One day you are healthy, then one day you are not.

I’m working on remembering to post in here as a real-time return to running blog.

Across media, we often see the end result. The triumph. We learn about the struggle later. This blog is for the person like me, trying to learn more about expectations after hysterectomy. The moments in recovery where you see progress, but where you also have dreams of where you want to be. Cue Taking Back Sunday. Months into the pandemic, quarantine is also part of the story.

Working through pandemic stress is something else on top of running. My media consumption changes with my stress levels. I started quarantine listening to podcasts like Ali on the Run on repeat (highly recommend for information and positivity and thoughtfulness). When I started running again in August, I wasn’t quite ready to hear other people’s stories while I ran. The music I listed to while competitively swimming hit my soul in the right way. The music reminded me of my fire. You may have seen me silently screaming along to Fall Out Boy, My Chemical Romance, and Lady Gaga around Baltimore. I said I was an emo kid, I didn’t say I was cool.

Despite the stress, running continues to go well. I’m consistently running over 25 miles a week, progressing through conservative 10% increase, and performing two closely monitored lifts a week with my orthopedic physical therapist. I very much wanted to dive in hard—but notice I’m not practicing circus yet? The cool thing about having multiple organs removed and the remaining ovary repaired, on top of endometriosis excision, is that recovery is LONG, even when you think you feel better. My psychologist and I talked about how the work we’ve done over the past year has translated into accepting the process, to see a way through.

Speaking of long-term quality of life—I have mixed feelings about races in 2020. I am well aware of safety protocols at races (yay!), but I will be cheering for people through social media. As a country, a community, we are being told to make our own risk assessment. But we aren’t all looking at this from the same lens. When you have a chronic illness, you think about your fragility. To quote Emily Toder over and over, I get to think about my own dying. At a poetry reading when I was 26, someone told me I was too obsessed with mortality for my age. Endometriosis isn’t my first encounter with medical trauma. I had a blood clot at 19, from undiagnosed thoracic outlet syndrome. I have been obsessed with existentialism and mortality since—a body is an uncontrollable miracle. I am concerned that a bout with COVID-19 could lead to new chronic symptoms. I don’t need more illness, and I do want to do everything I can to limit spreading to others.

We just don’t know the long-term effects of COVID-19, though we know some people are experiencing long-term issues. My life, and other people I know in the chronic illness community, has been dominated by the fact that one day you are healthy, then one day you are not. So instead of racing, I’m running solo, cheering through Strava and Instagram. And texting my run coach updates about when I want to incorporate solo time trials, pending clearance from my pelvic floor physical therapist. And texting my run coach that I’m so happy to feel good while rebuilding my base, because I am enjoying running for the sake of getting outside.

As cases rise in the United States while the holiday season begins, I do hope this perspective helps you think about your own movements. As most Baltimoreans say to each other when saying goodbye, stay safe. Some of us have taken to saying, stay safe and wash your hands.

Books I’m thinking about/recently read:

  • Hidden Valley Road by Bob Kolker
  • Vagina Problems: Endometriosis, Painful Sex, and Other Taboo Topics by Lara Parker
  • The Office of Historical Corrections: A Novella and Stories by Danielle Evans

Stay sweaty and glittery. Black Lives Matter.

Pumpkin Spice Emotions

Here we are, over six months into the pandemic. According to Clue, it’s been 141 days since my last period. In the Baltimore Flow meeting this morning, I said that Mary Elizabeth Garrett is out here, doing her best.

I am thinking about the tension of stress, grief, and joy. My heart has been worn. Today, the focus will be on ways I have found small joys, as I scream along to the acoustic version of “My Heart is the Worst Kind of Weapon.”

Running again, while listening to music that externalizes my emotions, has been such a joy, even though I gravitate towards decidedly not joyful 2000s scene music. Are you ever really a retired emo kid? I grew up loving Fall Out Boy. Yes, I saw them live during Warped Tour before they blew up. I forget about the gender while diving into their melodic rage.

I’m still moving slowly in adding back weight-lifting and circus arts. Being able to at least add the endorphins of running has been such a mood shift. Even on bad runs, I still get a runner’s high. A little over three weeks into the process of rebuilding, some runs have been rough. The humidity had come back in full force earlier this week, I was struggling to maintain a 10:30 mile pace. I had to give myself constant pep talks: you are running! You are running! Not every day is a good run!

Yesterday, with no humidity and weather in the 70s, I cruised easily at a 8:54 average pace for five miles. The pacing change in gentler weather is huge. My body has a hard time adapting to heat running, so in Baltimore summers, I just survive.

It’s pumpkin spice season—I bought three dairy free pumpkin spice creamers yesterday, so yes, I have strong feelings about this time of year—perhaps the weather will start to cooperate?

Because racing is ages away and I’m not comfortable running in groups, I have been working with my run coach to come up with some fun solo goals. On Halloween, I’m going to dress up and fly in a mile time trial. I am just so happy to have found a way to enjoy Halloween within a pandemic.

For the first time in years, I have been able to start drafting some poems. To Tracy / To Like / Like was released by akinoga press right after my first excision surgery. I finished the chapbook before I was diagnosed, and now it stands as an artifact of suffering I was trying to find language for. I had so little relief after that surgery. To see myself finding some snatches of time to write has been monumental. A lot of things are tough right now, but I would be remiss to not mention a small creative victory, to be able to document again and feel more than exhaustion.

Books I’m thinking about:

  • Black is the Body: Stories from My Grandmother’s Time, My Mother’s Time, and Mineby Emily Bernard
  • The Carrying: Poems, by Ada Limón

Stay sweaty and glittery. Black Lives Matter.

Are You Healed? Notes from Postop

Are you healed?

I don’t know how to answer that question. Or to quote Lucille Bluth, “I don’t understand the question, and I won’t respond to it.” Do you mean mentally? Still over here unpacking years of medical trauma. Physically? Still not allowed to run or practice circus arts, which is also tough mentally. Worldwide, we are in a pandemic. Worldwide, white folks that have opened their eyes to systemic racism should still be actively doing their part learning about and changing the systems.

So. I am almost eleven weeks postop from endometriosis excision, a hysterectomy, and an oophorectomy. How my body has responded won’t be clear until 6-12 months postop. I refer to it as major surgery, because it is. Saying it is a reminder that recovery takes time. That recovery is not linear.

Today, I’m taking time to reflect on the recovery process. What has helped, what hasn’t, and where my head is. 

I finished Big Friendship in two days. Aminatou Sow and Ann Friedman are two of my favorite cultural commentators. As a fan, reading the book was part celebration of their work and part hard-look at what friendship could be. I’m still ruminating over it in my mind. Perhaps I’ll have a longer response (or submit an essay about it for publication *gasp*), but for now, read it. Hurry to your library or local bookstore. It feels as pivotal in identifying the language and support around friendship as reading The Ethical Slut was in learning about communication in romantic relationships. I consider The Ethical Slut key in working on open communication, even if you are not polyamorous.  

I joined HysterSisters shortly before my surgery to receive recovery checkpoints. The reminders have been helpful, but as a queer woman without much connection to my womb as a miraculous, life-giving thing, the assumed gendered response to surgery in most online spaces hasn’t been helpful. My uterus was a temperamental organ that only brought me pain. 

Language around sisterhood and fertility is deeply entrenched in the endometriosis community. A common tag on Instagram is #endosisters. What about our enby and trans peers? Endoqueer, founded by Les Henderson after they participated on a race and endometriosis panel, is a new support group centering queer BIPOC voices. The space has a different dialogue around access to resources in which fertility isn’t necessarily the goal. I can’t wait to see and support more of what Les is doing. Can you see the recurring theme in which I deeply believe healthcare is critical in quality of life?

I’ve noticed that Mary Elizabeth Garrett—yes, I named my remaining ovary after a 19thcentury coercive, likely queer, Baltimore philanthropist (even though the crowdsource naming on Instagram overwhelmingly favored Gertrude Stein)—has been working hard. My naturopathic doctor recommended using ovulation test kits, but at this point, my hormonal cycle has stayed pretty consistent. I’ve been able to track it through the Garmin app, except for the week the app was down. Have fun with all my period symptoms, hackers! Use my data to change healthcare, thank you.

Even though I wrote a few paragraphs ago that I don’t like the gendered assumptions about my emotions around evicting my uterus, I’ve found post-partum recovery journeys from friends and strangers SO HELPFUL. There are many more accounts of returning to running after pregnancy than hysterectomy. (Please share any post-hysterectomy running journeys you are aware of in the comments!) Where do I find the parallels? Hysterectomy is the second most common surgery for women, after childbirth by cesarean delivery. I want more stories. Talking about anything related to a period has been socially considered TMI, even though sharing that kind of health information can be life-saving.

My run coach (miss you, Nick!) works for Lift Run Perform. The founder, Mary Johnson, has been open about her running journey throughout pregnancy and postpartum. I’ve been following her story in particular as a reminder that RECOVERY ISN’T LINEAR. I talk about this with my doctors and coach, but seeing someone live it, adjust their expectations, and now start to see success after so much patience has been critical for my mental health. One piece of media I’ve found helpful is Mary Johnson’s appearance on the Ali On The Run Show.

When I am cleared to run, I’m toying with the idea of posting highs and lows on the blog weekly, so there is another story out there for someone Googling “returning to running after hysterectomy.”

Books I’m thinking about and organizations to support:

  • The Ethical Slut: A Guide to Infinite Sexual Possibilities by Dossie Easton, Catherine A. Liszt
  • Big Friendship: How We Keep Each Other Close by Aminatou Sow and Ann Friedman
  • Wow, No Thank You by Samantha Irby
  • Showing Up for Racial Justice (SURJ)
  • Endoqueer

Stay sweaty and glittery. Black Lives Matter.