Tag: glitterature

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.

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 documentary, The 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.

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.

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 worse? What 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.

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.