What’s your fantasy?

One of the few things that got me through Wednesday’s workout was fantasizing that I was Molly Seidel in the Olympic marathon. However, I was nowhere near her pace as I jammed out to Ludacris. I was a sight to see. Shoes squishing, wet shorts flapping, and neither from rain. Couldn’t it at least start raining for some relief?

My one year anniversary of back to running happened this week. Other than excitedly texting my coach, I gave it little fanfare. Well, I guess writing about it on the blog is some fanfare.

Pushing through the weather was a test of mindset change. I adjusted my goals and carried on. I checked in with my body—was I feeling faint? No. Was anything hurting? No. Keep going. The workout was not be speedy, but it was work on my feet. My coach reminded me to use the humidity and heat pace chart next time, but I did not dwell on pace in a training cycle where I’ve had so many on point runs. I 100% contribute this to the hysterectomy. Sure, I didn’t test positive for adenomyosis, but something was real fucked up in there. For anyone new to this blog, I had maybe 1 week a month that I wasn’t in crippling pain due to endometriosis and potentially adenomyosis. I quote a common refrain in the endometriosis community: We’re not faking being sick. We’re faking being well.

Since restarting seed cycling in earnest again a few months ago, I didn’t even notice mood swings this luteal phase. I’ve also learned so much about hydration and fueling from the Fuel for the Sole podcast by Believe in the Run with Meghann Featherstun. I started learning about nutrition in earnest from Caitlin Self in 2018. She taught me so much about inflammation and chronic conditions. Now, I’m at a place with limited symptoms, therefore can think more about small tweaks that can substantially improve my running.

All of these things—being able to focus on small bits of health, being very at peace with being uterless—come from the mindset change that exhibited in this week’s workout. In such an uncertain, traumatic year (let me count the ways), I am preparing myself for fall race cancellations. It’s not pessimistic to be realistic. The delta variant is raging. I’m mentally prepared to test my training cycle in a time trial and to pivot to more trail time.

My fantasy would not only to have fall races, but for everyone to get the vaccine. While we wait for those vaccinations to kick in, I dream that people would wear their masks because they care about their community.

Books I’m thinking about/recently read:

  • Postcolonial Love Poem, Natalie Diaz
  • Spirit Run, Noé Álvarez

Stay sweaty and glittery. Black Lives Matter.

Protect Your Mental Health

Nearly every time I feel like I’ve forgotten how to sit silently and read, I learn that all I need is an empty day. The simple time makes me so happy, I know it’s important for my mental health.

There wasn’t much talk about mental health when I swam competitively, over a decade ago. Performance mattered, but it didn’t feel like the person behind the performance did. At this meet, I should have been celebrating how much the team overcame together, but all I could really think about was what I hadn’t accomplished as my swimming career ended.

It’s commendable for Simone Biles to make the decision to protect her mental and physical health—we won’t know more unless she chooses to share. It’s hard enough for an athlete to speak up about struggling when they strive to be the best, to be seen as strong. She’s paving the way for young athletes. Coaches, take note.

Speaking of mental health, I talked about the intersection of mental health and chronic illness with Amatus Health. You can listen to podcast Episode 30 of Share here. Also listen in for the sarcasm I drip on words like *hysterical*.

Summer is supposed to be down time for me, but it hasn’t been. At Lyra Choreography last week, I let my entire body melt into the mat. For the first time in weeks, I felt like I slowed down. It was 9:30pm on a Thursday.

Running is moving along. Despite the level of business, I am happy with how half marathon training has progressed, especially in the extreme heat and humidity in Baltimore. To stay balanced in running, I lean on the creativity of circus arts.

Circus arts take incredible strength and endurance, separate from running. On lyra, my first movement love, you hold on, pretending to be graceful while using different points of pressure on your body to create gravity defying shapes. Add a spin, and no one can tell how hard it is as long as you control your face too. This is all while trying not to fall to the floor.

It’s a safe space for me to explore when my mind and the outside world feel like chaos. Recently, the choreography class was spent exploring emotion and shape. Our coach played a song and asked us to lead with our elbows, then picked another song and asked us to lead with our hips.

There is a foundation in all the movements, but after the foundation, possibilities are endless. As much as I love running, lyra and other circus arts allow more creativity. It’s not like a road race, where strategy still depends on speed.

Books I’m thinking about/recently read:

  • How Beautiful We Were, Imbolo Mbue
  • On Juneteenth, Annette Gordon-Reed

Stay sweaty and glittery. Black Lives Matter.

Consistent, Careful Mileage

I’d like every day to feel like this morning, or to feel like the thrill of new friendships budding. Those are moments I feel like I’ve discovered something about existence.

I knew there was a reason I bought a Koala Clip with Shalane Flanagan’s iconic quote—my first response to Nick after today’s workout was “what the fuck!!!”

In the unreasonable heat, I told myself to just give it a go today. I ended up cruising in a 3 x 8 minutes workout: 7:35, 7:33, 7:24 with 3 minutes easy running between each. I did walk a bit of each recovery rep to bring my heart rate down in the heat, but still. A year ago I was only allowed to walk. Seeing how consistent, careful mileage building pays off has been a real joy.

I struggled to run these paces in good weather before the Cambridge half. I should say something about that half marathon, shouldn’t I? I raced a half marathon in May. About two months ago at this point. I PRed, unofficially by 3 minutes, officially by 2 minutes. The course was .15 miles long for everyone I talked to—unofficial or official, I ran a strong race at a 7:59 per mile pace. Consistent splits and positive self talk are two things I am so pleased I maintained during the race.

However, I do not recommend crying while racing. Around mile 8, I started thinking about where I was a year ago. Desperate for another surgery. Struggling to sleep because of all-encompassing pain. Bleeding through at least 40 tampons a menstrual cycle (I recently learned 8 tampons is “normal”). Always planning an escape plan for unplanned bleeding or pain. Yet here I was, flying through a half marathon. I hyperventilated for a bit, but there were still 40 minutes of running to go. Taylor Swift’s “22” started playing and I pulled it together. Show me someone that doesn’t smile when that bouncy chord opening starts.

More than the time, I am SO HAPPY to have experienced the social aspect of a race again. The chats before, commiserating during, the exhausted but thrilled recaps together after. Saying to each other things like “looking strong” or “we got this” or “I’ve been pacing you”. Overall, the race was a delight. I even threw myself into a group that was from Baltimore and chatted for a bit after the race. It took everything to not say “could we be best friends?” after the year without races.

As Jessica Pan wrote in her book, Sorry I’m Late, I Didn’t Want to Come, “Why can’t confidence and optimism come with a lifetime guarantee?” I would pay for that that. She recommends walking into a room like a tall American man. Are men ever rattled? I’d like every day to feel like this morning, or to feel like the thrill of new friendships budding. Those are moments I feel like I’ve discovered something about existence.

I took more of Pan’s energy into the Baltimore 10-Miler. Dare I say I enjoyed the 900 feet of elevation more than the flat race? What’s this? The scenery changed, no—the scenery rolled in Baltimore County country. Seeing the landscape helped me understand the area a bit more. The greens and blues crackled in the morning light. As the second race of the year, I also felt less emotionally overwhelmed. I’ll probably hop in a few more races throughout the summer while preparing for the Wineglass Half Marathon.

Books I’m thinking about/recently read:

  • Sorry I’m Late, I Didn’t Want to Come: An Introvert’s Year of Living Dangerously by Jessica Pan
  • Chesapeake Requiem by Earl Swift
  • Detransition, Baby by Torrey Peters

Stay sweaty and glittery. Black Lives Matter.

Pre-Race Small Joys

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

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

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

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

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

Books I’m thinking about/recently read:

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

Stay sweaty and glittery. Black Lives Matter.

Demons In Your Foot

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

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

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

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

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

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

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

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

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

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

Books I’m thinking about/recently read:

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

Stay sweaty and glittery. Black Lives Matter.

You Made Her Like That

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

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

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

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

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

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

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

Books I’m thinking about/recently read:

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

Stay sweaty and glittery. Black Lives Matter.

Dandelion Vibes

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

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

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

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

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

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

Books I’m thinking about/recently read:

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

Stay sweaty and glittery. Black Lives Matter.

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 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.

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.