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.

#cheesememe

It’s the beginning of Endometriosis Awareness Month, and today, I want to talk about cheese. I may be influenced by Jenny Lawson. I finished Furiously Happy on audiobook in January and I’ve been thinking humor and chronic illness since then. As I change my daily habits, I will never forget all that cheese has done for my gastrointestinal system and my poetry career.

This post will begin with a confession: I watch The Today Show almost every day. I’ve had this morning ritual since moving to Baltimore in 2010. Despite changes in career and habits (early bird to night owl, then back to early bird), Al Roker has stayed with me. He’s the only staff member that hasn’t changed in the eight year period, right? But I was betrayed on January 31, 2019. The segment was on CHEESE.

Per nutritionist advice, I have mostly eliminated dairy (anything with casein, the main protein in dairy) from my diet since February 2018. Endometriosis is exacerbated by inflammation. Dairy is an inflammatory food. I grumbled my way through it, and continue to grumble to this day. Are we at Harris Teeter? Let’s walk by the cheese area to check on my favorites. Look, Satori Balsamic Bellavinto Cheese is on sale and in a sample pod! I’m going to smell it. Ordering food? Homeslyce still has my favorite four-cheese garlic. Let me linger my mouse over the item, remembering the surprise of tart blue cheese with sweeter mozzarella, then build-my-own-pizza with dairy-free cheese, pineapple, and basil.

If a poet can have a brand (debatable), I built the early part of my career on sad poems about loneliness and cheese. Spreadable cheese, block cheese, string cheese (which I bite into, by the way)—cheese was comfort. The soft taste on the tongue, the salty sting, was a hug from the inside. There was even a Baltimore flurry of #cheesememe posts after an MFA classmate made a book out of Kraft Singles (3-4 years ago, I think). How is that book doing, anyway? I saw it about a year ago and it still hadn’t started decomposing. Giving up cheese was probably a good idea.

Anyway, it’s day two of Endometriosis Awareness Month. Click here for facts—the disease affects an estimated 176 million people worldwide. The disease isn’t limited to gender. Or cheese preferences. I’ll be posting more on my Instagram and on the blog throughout the month.

Stay sweaty and glittery.