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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.

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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.

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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.

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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.

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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.

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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.

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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.

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Vulnerability & Identity

I deserve to be healthy. You deserve to be healthy. We are all worth a second opinion.

Vulnerability is easy when you’re happy. I thought I was comfortable sharing—I’ve been writing this blog for over a year and have been on the Internet since Xanga, ya know?—but apparently not. Not when I thought my life was really trending up. Or whatever stock market term makes sense.

One of the difficult things I’ve learned in therapy, and well, all my fucking appointments, is how hard we hold on to identity. This month, I’m taking the time social distancing to reflect on identity and mental health. 

Athletics help me feel normal. It’s been a part of my identify since I was a child, I cannot remember otherwise. Even though it could just as well be otherwise. (A bit of an aside, I got really into existentialism when I had a blood clot at 19.)

Lindsey Vonn’s documentaryThe Final Season, was illuminating when I watched it a few months ago while I was flattened on the couch by endometriosis symptoms. The film came to a climax during the press conference before her final race. She’s sparing with a male journalist about her career. Vonn is unrelenting and gives everything, despite the physical pain that is living the life of a serious athlete in your 30s. She feels isolated.

Though different, chronic injury is on a similar plane as chronic illness. I was chronically injured as a Division I swimmer since my freshman year. I started at Rutgers as a distance swimmer. When my shoulders failed me (or rather, the 10,000 yards a day wore down the cartilage), I was able to transition to middle distance backstroke and butterfly with a strong underwater kick that had already been a major part of my distance success. A group of us were in a similar situation, which created a special bond. We spent extra time with trainers, extra time with doctors, but we were still isolated from teammates that thought we weren’t trying hard enough. Similarly, when you have a chronic illness, it’s hard not to notice when friends and family are frustrated that new treatments, new diets, additional surgery, don’t seem to help enough. Then you have people slide into your life with: Meditation changed so-and-so’s life. Yoga healed my friend’s fibromyalgia. Etc, etc.

So what’s identity? I think about impression management and have so many questions: Am I communicating I’m an athlete? Am I communicating I’m an artist? Can I be a jock poet? If I can run and practice circus, am I really sick enough to have a chronic illness?

When I was an athlete, I would train through pain, which lead to severe chronic injuries. I’d downplay it with doctors, I’d trust I could keep going because a coach said I should. Because they said it was a sign of toughness. I don’t always talk about my doctor-anxiety in therapy, but all the work I’ve been doing with my therapist has made me realize that if something feels wrong, it probably is. This has made me smarter in running. It has made me comfortable speaking up at work. It has helped me realize I’m not crazy or hysterical if I’m upset when I’m dismissed by a doctor.

Here’s an example. Last summer, I went to my primary care physician because my energy was unusually low. I read her the list of symptoms I tracked in the months leading up to the appointment. Rather than ordering a blood test, she countered every symptom with the response, It’s probably anxiety and depression. After her forth response, I spat out, You’d be depressed to if no one believed the pain you have been in for years. She ended up relenting and ordering bloodwork, but only ordered one very basic thyroid test. Another doctor ordered a better panel, but in the end, I knew I needed a holistic approach. I saved money to see a highly recommended out-of-network doctor that practices naturopathic medicine, therefore looks at the full picture of what is happening inside a patient’s body coupled with their lifestyle. The results were a surprise to no one that listens to the length and heaviness of my periods during an intake: my iron WAS low. Off I went to a hematologist that immediately recommended an iron infusion. 

The two-part infusion was a few weeks ago. I have noticed some significant changes. Although my period this month was bring-me-to-my-knees painful, I didn’t have the brain fog that usually comes with severe fatigue. It’s a relief, I have been really concerned about that symptom. I also coped with the pain better than I have for the past few years. No emotional breakdowns this month. I’ll keep track of this in my spreadsheet, but the anxiety and depression that would normally come with my period barely registered. It seems that because I was not bone-tired, I could hold on to the fact that the pain was temporary, another surgery is on the schedule, I could keep going even though the state of the world is precarious. Nurse and endometriosis advocate, Nancy Petersen, referenced a study at the Endometriosis Summit that supports this: for many chronic illness patients, their depression lifts when (and only when) their significant symptoms are properly treated. I keep thinking about my PCP, who does not seem to understand that.

I deserve to be healthy. You deserve to be healthy. We are all worth a second opinion. We all deserve access to quality healthcare. Our system needs a serious look at the accessibility of long-term care for chronic patients. 

The books I was thinking about while writing this:

  • The Unbearable Lightness of Being, Milan Kundera
  • She Said, Jodie Kantor and Megan Twohey
  • The Sirens of Titan, Kurt Vonnegut

Stay sweaty and glittery.

It’s Mental Health Awareness Month. National Alliance on Mental Illness has resources year round, locally NAMI Metro Baltimore is there for anyone that needs help.

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Health in the Time of Coronavirus

The staff member that answered confirmed the appointment was moving forward. She said, “Essential appointments are not cancelled.”

How is everyone doing? I had other writing planned…and then COVID-19.

Baltimore businesses and other nonessential services have been closed for a week. I’m not alone in my anxiety about missing appointments that help me function, help me participate in society. My social media presence looks pretty rosy—I know. That’s curation. When the endometriosis pain is overwhelming, I can look at what I’ve done and remind myself that how I feel is not forever.

Reminding myself that it is not forever does not minimize the impact. The pain is real. I’ve lost an unreasonable amount of time. Previous symptoms have escalated, and new ones have been consistent for quite a few months. After the recommendation of Nancy Petersen (The legend!!—I introduced myself at the Endometriosis Summit which I will write a bit more about shortly, but I have to say that her in-person energy is warm and hopeful. She’s always trying to problem solve with the best information), I made an appointment with a new surgeon in the Baltimore area. The appointment was earlier this week. I worried and worried that it would be cancelled, so I called the day before. The staff member that answered confirmed the appointment was moving forward. She said, “Essential appointments are not cancelled.”

I thanked her profusely for staying open before hanging up to cry. Even with the incredible practitioners I work with, I haven’t acknowledged that endometriosis care is essential. I’ll bring this up in therapy tomorrow…probably. Honoring that endometriosis has brought life-altering pain is an ongoing and difficult place for me to go. For now, I want to say that I’m hopeful about my current care plan. Because even with some dear healthcare providers closed, I still have the support and knowledge they shared. In the pandemic, please remember to deep breathe and do healthy things to move. That’s the best advice I can give, I’m not a doctor! I’m a master of words.

I did want to share a bit more about the Endometriosis Summit earlier this month, especially because it’s a reminder that community continues to work hard. Go if you are able to attend, or watch the live-stream. I learned more in six hours than I had in the two years since my diagnosis. The pelvic floor PT, acupuncture, therapy were all validated. Another big development from the conference: Endo What? launched the School Nurse Initiative. They will send a free education toolkit to the school nurse of your choice. Even with schools closed, the organization announced today that nurses working from home can still receive the kits. Participate to help educators learn so the next generation doesn’t have to spend years suffering silently.

The book I was thinking about while writing this:

  • Beating Endo: How to Reclaim Your Life from Endometriosis by Dr. Iris Kerin Orbuch and Amy Stein DPT
  • Dear Girlsby Ali Wong
  • The Crying Bookby Heather Christle

Stay sweaty and glittery.

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Filming with WebMD

It’s easier to put on red lipstick and scream on the inside.

Casual kitchen interview look

In November, I spent two days filming with a crew for WebMD. I share my endometriosis journey to help spread better information, to break down the isolation of the alienating condition. Because it’s chronic, I worry how it will affect my career. I worry that people will just look at me as sick and weak. I know those are fears, not facts, so I’m so glad WebMD has a three part series about endometriosis in which I am one of the features (and I talk about these fears).

Often I hear, I didn’t know it was so bad. Endometriosis isn’t a light conversation. It’s easier to put on red lipstick and scream on the inside. Pushing down trauma doesn’t work (it will roar), so here’s a special shout to the practitioners that have helped me listen to my body and advocate for better care: Indigo Physiotherapy, Caitlin Self, Sustainability Wellness, Be Psychotherapy, and not a practitioner, but In the Dark Circus Arts has been a magical space. Then of course, there is Staci, doing so much for the community at Cramped Style blog and the Baltimore Flow.

I’m of the mind that health justice and civil rights have similar goals—so let’s work together to change the experiences for the next generation. Watch all three videos through the link.

The book I’ve been savoring: Drive Your Plow Over the Bones of the Dead by Olga Tokarczuk, translated by Antonia Lloyd-Jones.

Stay sweaty and glittery.

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Changing Pain

I’m more than work and physical pain. There is movement and creativity—all experiences better when shared.

I’ve been looking back at my blog this year and notice how often I work to mention joy. I can’t deny the impact of Ross Gay’s The Book of Delights on my perspective. I think about his work, and many others I’ve read this year, while reflecting on what I’ve attempted to do in 2019. Which has turned out to be a lot. One of the difficult things I’ve learned in therapy, and well, all my fucking appointments, is how hard it is to undo thought patterns. 

Much of my time this year has been spent at doctors: pelvic floor physical therapy, gynecologist, acupuncture, therapy, orthopedic physical therapy, general practitioner…I’m exhausted. In November, I was at multiple doctors a week. I burned out, cancelled a bunch to get back to some basics and have social time. Trying to pack all the appointments for my health ended up becoming more stressful than helpful.

I’ll echo what many have said about chronic illness: it’s isolating and exhausting. Managing your health feels like a full-time job. You’re always calculating your time. You look at other people and feel resentment that they haven’t been to a doctor weeks, or even years (that’s probably a bad move on the opposite side of the spectrum). Every social interaction and choice become loaded with the question will I make my symptoms worseWhat will I have to do to undo this event?

Talia Hibbert puts the isolating feeling in perspective in Get A Life Chloe Brown, “Her body was vulnerable enough without her heart following suit.” Chloe Brown has fibromyalgia, and after her friends and fiancé have left her, she’s convinced herself she’s better alone. Que her writing a list to be more adventurous. Relationships are already vulnerable. Add constant pain, unpredictable energy levels, and a social life feels more like a let-down. But like Chloe, that’s not what I want. I’m more than work and physical pain. There is movement and creativity—all experiences better when shared.

The shift I’m feeling isn’t only from the books I’ve read. I can’t tell if it’s the annoying phrase, getting older, or the perspective change with time. Or therapy. After writing a book about not wanting to be vulnerable, maybe now it’s easier to see the importance of relationships. My partner is incredibly supportive, I’ve had a chance to collaborate with all sorts of creatives and change-makers at work, I can make time for friends, my family sticks around—maybe it all will be okay. I can change how I react to pain.

In order to intentionally find more joy and spend time with loved ones, I’ve decided 2020 will be The Year of the French Fry. I LOVE potatoes (ask friends that went to The Woods writing retreat about my 2018 potato poem). I also love exploring different parts of Baltimore with people. So in the comments, please suggest your favorite fries, from Royal Farms to upscale restaurant. French fries have diverse pleasures. Just like Baltimore. 

The book I was thinking about while writing this (obviously, perhaps):

Stay sweaty and glittery.

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Something to Know

One of these times, if I get the words in the correct order, if I retrace more precisely the lines of history, I am convinced I will learn something I need to know.
– Rebecca Makkai

There is no better time to write than during a two hour wait for my tires to be replaced, am I right? Eleven months into blogging about endometriosis, and I have more frustrations than answers. I’ve heard countless authors talk about this, read countless essays about this—there is an idea that you can write your way out of something. I should say something about obsession here.

What else don’t we know? The universe may be one billion years younger than projected. This is the ultimate I thought it was Friday, but it’s only Wednesdaymoment. I white knuckle through the day and feel the thrill of bronzer tricking people about my health. It’s the sinking thrill of the phrase you don’t look sick

Memories are a haunting. I feel the ache start to grow in my pelvis and panic, then try to breathe. What have I done wrong this month to trigger symptoms? Why did my surgeon say there was nothing else he could do? Is my mood at this point in the cycle because of medical trauma? Why can’t I deflect with some jokes right now?

Still, I’m not interested in the theory that endometriosis is caused by trauma. The theory allows doctors to dismiss pain as all in your head, or even with the best intentions, make the pain some part of an individual suffering narrative, rather than an illness to be treated with medical intervention. I’m interested in how we (general public, doctors, researchers) will cling to any vague theory that may provide a reason. Then I remember—I don’t want to shake from exhaustion and pain any more. I want a reason, or an answer.

Here’s something to know—the holidays are difficult. I think about limitations as I drive to visit friends and family, yet end up distracted and in pain during the visits from these drives. Yet I spoke up recently. My parents drove, and I slept under a blanket with the heat in the car blasting. Small steps.

Some books that explore trauma in different ways which I was thinking about while writing this:

  • The Nickel Boys, Colson Whitehead
  • Music for Wartime, Rebecca Makkai
  • Felon, Reginald Dwayne Betts
  • Queenie, Candice Carty-Williams

Stay sweaty and glittery.

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Feeling Athletic & Chronically Ill: Not Polarized Feelings

Setting the scene: I’m propped up on the chaise section of the couch with a heating pad on my back, a cat snuggled on my shins, while I think about the Baltimore Running Festival 5k. I set a personal record by 30 seconds yesterday, running the 5k in 21:23. This post will recap the race, then I’ll explain what I did to prepare while managing endometriosis. I share my endometriosis journey not so you feel sympathy, but to share information and break down the isolation that comes with the alienating condition. I run for the endowarriors that can’t because their kidneys or diaphragm are compromised from the disease, or because a doctor has not referred them to excision surgery.

First, the easy part: the race recap. The weather was PERFECT. The course was mostly shaded by buildings in the 7:30am morning sun while the temperature was around 50 degrees. I wore a Team Baltimore Flowtank top and shorts because I know I overheat. 

Mile 1: 6:49 pace

The first mile felt easy. I started close to a 6 minute mile, so I pulled back. My virtual coach from Charm City Run sent positive affirmations throughout training to help me feel confident in controlling the first mile. I also saw Frugal Nutrition a bunch of times on her bike. Seeing her brought me so much joy!

Mile 2: 6:58 pace

            I worked on staying controlled and strong, repeating lines from “Polarize” in my head. It’s deciding where to die and deciding where to fight, deny, deny, denial. I find those lines comforting, anyway. The course layout also helped with staying strong. The turn-around was at the halfway point, which helped me chunk each half mile as a small goal to reach. 

Mile 3: 7:00 pace

            The race is billed as “completely flat”—not true!! Maybe compared to the traumatic hills in the half marathon and marathon, but NO. Most of the race is like running at a 1-3 elevation on the treadmill. The course is a common route for my training runs, so I paid careful attention to these changes in order to mentally prepare, and you know, not have unrealistic expectations. The stretch of Key Highway next to Rash Field tends to mess with me. To push through these soft elevation changes, I thought about all my 6:30-6:40 paced repeats in sprint runs workouts.

Last .1: 6:15 pace

            I turned the corner of Charles and Pratt to face my partner and his family screaming, seeing them gave me strength to push it with everything I had left. I had more speed than I expected. I feel more confident that mile 2 can be more aggressive, setting me up to also push harder on mile 3. My heart rate never crested 150. After multiple 5k bonks with a final mile slower than 8 minutes, I can finally see I’m capable of a consistent race pace. My coach planned quite a few runs at tempo pace for 30-40 minutes. They are physically and mentally challenging, but that made the 5k speed seem less daunting.

Will I ever have cute race photos?

I was in my ovulation phase the week before the race, which brings escalating pelvic pain and fatigue as I get closer to my menstrual cycle (yes, despite having excision surgery 16 months ago). I acknowledged my fear that it would be detrimental on race day, then did my best to let the feeling go. Wouldn’t it be great to one day run a race on the most energetic day of my cycle! Rest, despite three evening events at work, was a priority all week. Also: water, gentle stretching, and easy work at physical therapy for an unhappy hamstring. My partner and I partially prepped dinner to remove the dinner decision making after long work days.

How did I prepare in general? In addition to working with a virtual running coach, I have an incredible care team that includes pelvic floor physical therapy, acupuncture, and a gynecologist. I also take extra care to preserve my health by reading about the latest endometriosis research and hormonal cycles in training. If you are looking for a start in your endometriosis journey, join Nancy’s Nook on Facebook. The group has the latest research resources and doctor recommendations. The admins work tirelessly to remove misinformation.

An awful truth: most of my care is not covered by insurance. On top of endometriosis having a 7-10 year diagnostic window, most of the best care is still difficult to access. There are multiple reasons: dismissal of women’s pain (just read this essay by Tressie MacMillan Cottom), inadequate diagnostic procedures, or insurance companies deeming excision surgery medically unnecessary. When your body is experiencing pain for such a long time, it takes extra care after diagnosis to get close to a baseline of “normal,” which I like to think of as pain-free. I’m still not there. Working to balance my hormones and energy levels with everything listed above has been a start. I cycle syncto nourish my body, including easy activities at certain times, even when I’m working towards big running goals. 

More than the pain, I’m at a point where I can barely control my anger about inadequate care and access to resources. Writing to break the silence is my main advocacy now, though that will change as I meet more people working to create change.

Some books I was thinking about while writing this:

  • The Body Paper, Grace Talusan
  • Music for Wartime, Rebecca Makkai
  • Thick, Tressie MacMillan Cottom

Now, to take a week off from running to stretch, practice yoga, and learn new hamstring strengthening tools at physical therapy. Stay sweaty and glittery.

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Curious Potential

Beating Endo: How to Reclaim Your Life from Endometriosis and ROAR: How to Match Your Food and Fitness to Your Unique Female Physiology for Optimum Performance, Great Health, and a Strong, Lean Body for Life arrived earlier this month. As I continue to work toward a sub-20 minute 5k, I’m also working on taking to heart the advice from my acupuncturist and pelvic floor physical therapist: running easy (or not at all) while I have my cycle. I’ll write more about my experience with those books and a virtual running coach after the Baltimore Running Festival 5k. I’m so curious about potential.

Why is not running so hard? I spent a decade being told my pain was normal. I was treated as if I was lying, weak, or hysterical. I needed to take the pill or suck it up. The message was that it was my fault I couldn’t stomach the pain. I was already practicing this kind of self-talk anyway–I swam on a team where the coach said that you’re recovering while sitting in class in between morning practice and evening practice. Unlearning those beliefs will take time. I’ve been repeating the phrase that Sonya Renee Taylor created an organization around: the body is not an apology.

I’m curious to see how radical self-love and athletics interact as I face the unknown. I’d like to think they’re not mutually exclusive if the movement is about exploring the unknown and internalized expectations. Taylor recounts an encounter with a free-diver as description of the journey of radical self-love: “learning the difference between fear and danger.”

As I read Taylor, my thoughts wander to Leslie Heywood and Shari Dworkin’s Built to Win: The Female Athlete as Cultural Icon: “Serious athletic training paradoxically produces a profound (and only partially mistaken) sense of the self-authorship of one’s body. This sense is one of the benefits of sport—you get beyond a culturally mediated sense of your body…And you feel that, through your labor, you’ve made yourself.” Have I used athletics to make myself? As much as I want to PR at 31, I run for the endo warriors who can’t. The ones whose kidneys and diaphragms are compromised by the disease, the ones whose healthcare won’t cover excision surgery. I see your fight and this is where I am in mine.

I’ve run with two Baltimore running groups this month: Faster Bastards and Riot Squad Running. Both groups are open and supportive and use positive self-talk when talking about new races. I love this, and plan to continue running with them while remembering that ultra-marathons may not be for me, though I have the joy of spending a Saturday morning running around the waterfront for 10 miles. It’s not lazy that I prefer 5k and 10k races. As my health changes, I’m going to continue to explore potential. 

Some books I was thinking about while writing this:

  • The Body Is Not an Apology: The Power of Radical Self-Love, Sonya Renee Taylor
  • Built to Win: The Female Athlete as Cultural Icon byLeslie Heywood and Shari Dworkin
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A Playlist For Every Pain

Legitimate endometriosis specialists and advocates will be on The Today Show next week. It feels like a change in awareness is coming. The air is less salty, even the ground has a spring. 

I am thrilled, especially because earlier this month an endometriosis specialist in the area was on the morning news, sharing outdated knowledge. One of those statements was that it’s common for folks with endometriosis to have another surgery in two years. With true expert excision surgery, that’s incorrect. Let’s consider the monetary cost, without even mentioning the physical and emotion cost of surgery: the doctor expects someone to accept that every two years the patient will 1. take significant time off work and 2. pay for invasive $20,000 surgery? How is this acceptable care for something that has barely been researched?

I want to follow the light today. I don’t want to think about the doctor that told me I don’t look sick, when I went to her for help with a list of symptoms. Or the anxiety that comes with each ovulation. Or the depression that comes with a lack of change under a new treatment. I want to talk about music that keeps me going. The Warped-Tour-mixtape-generation has stuck with me through changes in media. I have all sorts of playlists, from running fast as an emo kid to getting to work and writing. Here are some highlights from my chronic pain playlist:

Ace of Base – The Sign
I know what you’re thinking. Ace of Base? Life is demanding without understanding. This is Swedish pop, right? I’m trying to write these without major research, more with gut reaction. The sticky-pop has existential lyrics, like the period of time right before diagnosis.

Janelle Monáe – Tightrope [feat. Big Boi] 
I first heard this song in a spin class with “Crazy Eddie.” I associate this song with sweat on the floor, triumph in my heart. Joy in the face of pain. Belief in my body. I keep on blaming the machine.The fine balance Monáe sings about is just PERFECT. Don’t @ me, I love this song.

Amanda Palmer – Runs In The Family
A friend gave me a collection of Amanda Palmer/Dresden Dolls songs in 2014 and my mind exploded. They blend performance, art, and theatrics beautifully. Runs In The Family captures the anxiety and rage that come with invisible chronic illness, and considers the question of intergenerational trauma. If wellness is this what in hell’s name is sickness. Want to say that I don’t look sick again? 

Migraine – twenty one pilots
I’ve agonized a bit over which twenty one pilots song to include. I was a late adaptor—coming to the band when Stressed Out was released. But of course, they were first signed to one of my favorite pop punk labels, Fueled By Ramen. I mean, they expemplifiy the dancy-pop-punk full of angst that I still can’t get enough of. I think I just like how sad and hopeful this song specifically is.

Panic! At The Disco – Nails For Breakfast, Tacks For Snacks 
Speaking of Fueled By Ramen, I have to be honest and include Panic at the Disco (no exclamation point right now, right?). A Fever You Can’t Sweat Out was inspired by Chuck Palahniuk’s books. Though I’m not Team Chuck since finding feminism, I can’t deny the sad-Vegas-pop-punk fusion I spent time with in high school. This song, and many of the early Panic songs, feel like when you’re trying to assert that you are in pain and deserve to be heard.

That’s an excerpt. The playlist will be constantly changing, like my levels of hope. Listen here.

Stay sweaty and glittery.