Tag: excision

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.

Sweaty & Glittery & Committed

The more you know, the more the healthcare system can change.

Well, I hope that sunset picture gave you a sense of calm before I dive in.

Surgery recovery isn’t easy. Below are some honest realities from the perspective of the three week post-op mark from endometriosis excision and a hysterectomy, which I hope continue to get better over the next week before returning to work.

I had a catheter for 3 days and found it mentally taxing in a way I had not anticipated. It wasn’t part of the plan, but the amount of endometriosis the surgeon found when she opened me up, and ovary repair necessary to preserve my hormonal cycles, turned a 4 hour surgery into a 6+ hour procedure. I am so freaking grateful for mobility over the past two weeks and the ability to pee on my own.

I’m peeing every hour to protect my bladder. There was so much endometriosis all over it, my surgeon told me to be cognizant about not over-filling it to allow the tissue and nerves to heal. I’m also icing my elbows. I can’t straighten my arms without pain. My surgeon is pretty sure the length of surgery (over 6 hours) irritated the nerves in my arms. 

In health, the stakes are high. My quality of life was so low that I was willing to take the risk with major surgery. Nothing compared to the pain I anticipated & GUTTED THROUGH over half of each month. I’m still optimistic about a full recovery. I have a comeback list, which includes truly training both sides once I’m cleared for aerial arts. 

A hysterectomy does not cure endometriosis. Endometriosis exists outside the uterus. My uterus is being tested for adenomyosis, a disease that causes pain similar to endometriosis, but only exists inside the tissue of the uterus. Adenomyosis is diagnosed through biopsy after the uterus is removed. Before recommending a hysterectomy, an expert surgeon (not a general gynecologist) will do additional tests and assess your symptoms to confirm their suspicions. Among many factors, my periods were so long and awful that I was ready to be uter-less, even if an adenomyosis biopsy doesn’t come back positive. Again for the people in the back: a hysterectomy does not cure endometriosis. 

As a white woman in her 30s, America’s legacy of white supremacy allowed me the CHOICE of a hysterectomy. Black woman have not had this choice, which is a product of racial bias in healthcare. Eugenics were policy not long ago. There are countless women, like the legendary Fannie Lou Hamer, who woke up from a surgery in 1961 to find that she had be sterilized without consent, which was legal under Mississippi law. The more you know, the more the healthcare system can change. Just this week, Kyla Canzater contacted Johns Hopkins to voice concern that “white women” was listed as risk factor for endometriosis. Whiteness as a risk factor has now been removed from their webpage.

I mentioned earlier in the post that I’m optimistic about a full recovery. Endometriosis is difficult to manage for a multitude of reasons. Because of misogyny and racism still prevalent in healthcare, it takes approximately 7-10 years to diagnosis. Once your body has been under duress for so long, you’re not just treating endometriosis. There is impact on other organ systems like the kidneys, vitamin deficiencies, chronic inflammation, psychological trauma, all on top of removing the endometriosis. Healthcare is woefully under-equipped to treat the complexity of the disease at this time. In addition to my usual “what I’m reading” send-off, I included links to organizations working to change this.

Further reading and organizations to support:

Stay sweaty and glittery and committed. And remember, because maybe it wasn’t clear throughout my post, Black Lives Matter. There are many ways to implement change and I firmly believe that access to quality healthcare is necessary in the fight for equal rights.