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.
#poetsthatsweat 