Day 21: Wear Red for Vascular Ehlers Danlos Syndrome
Day 22: Proudest Moment
This photo is from two years ago. It was from my first day back to work after my patellofemoral (kneecap) replacement and MPFL (tendons) reconstruction. I was in a locked Bledsoe brace (like the QB before Brady) for two months. I was stuck at home for all that time. It was a painful and difficult physical therapy/recovery.
I was very happy and proud to get back to work at the library. I wasn’t quite able to drive, so my coworker, Donna, picked me up and my husband drove me home. I am very lucky to have a supportive and accommodating work environment!
Day 23: My Wish for Ehlers-Danlos Syndrome
My Wish for Ehlers Danlos syndrome (A day late because I felt like trash yesterday … because of EDS 😂). Here’s a picture of me before I knew I had EDS. Of course I was good at ballet like most hypermobile folks. 🩰
What is my wish for Ehlers Danlos syndrome? Well, first off, I would use any hypothetical medical wish for Huntington’s Disease, which has affected my paternal side of my family so horribly. Or for Parkinson’s Disease and Lewy Body Dementia, which claimed my parent’s life.
I do wish that there was a cure and/or treatments for all types of EDS. I was diagnosed with type III hypermobility. I haven’t had the actual genetic testing to rule out vascular EDS, which is much more serious (thanks, health insurance!). My wish would definitely start with cures/treatments for the more deadly EDS types. Another wish: greater empathy, knowledge, understanding in the medical community.
Day 24: Future Goals
- Have a kick-ass life with the man in this photo and our two cats. (Photo by Jessica Cronin Photography)
- Hug my nephew on my birthday (June 20) coz he’ll be fully vaccinated! Also hug Lisa Love as soon as my husband is fully vaccinated!
- Go to lots of concerts including but not limited to Ash, Nick Cave, Pillow Queens, Nine Inch Nails, Wolf Alice, Harry Styles, The Cure, Piroshka, Garbage, Kero Kero Bonito, The National, Matt Berninger, Hinds, Miley Cyrus (so I can see Stacy and Jamie!) Black Rebel Motorcycle Club, Belly, A Band of Their Own, Vast, Dubstar, Gillian Welch, New Order, Pet Shop Boys, The Joy Formidable, Taylor Swift, Letters to Cleo, Butch Walker, and more!
- Visit museums.
- Keep working part-time at the library.
- Have joint stabilization surgeries.
- Continue physical therapy to strengthen my body.
- Travel more.
- Write a book (I’ve been saying this forever. People tell me I should.)
Day 25: Share Your Visible
Trigger warning: scars/staples
Here are some photos that show the not-so-glamorous side (ha) of Ehlers-Danlos syndrome. In photo 1, I’m dealing with an intractable migraine and insomnia. Photo 2: In the Emergency Department because of a postural orthostatic tachycardia syndrome episode, but looking like ET. Photo 3: Pre-surgery, I think? Dunno which surgery. Photo 4: Taking a break in NYC. I’m at that point that I need a rollator for vacations and walks. My HurryCane doesn’t cut it. I need to upgrade to a rollator that converts to a wheelchair. Photo 5: Post-op photo after my patellofemoral replacement and MPFL reconstruction with cadaver tendons on my left knee. My right foot/ankle is on deck. MRI on Tuesday to determine how extensive the surgery will be. Then I have an upper GI endoscopy and a colonoscopy the following week because of my gastroparesis/gastritis flare/history of cancer. Ah, summer fun!
Day 26: Self-Care
I’m suffering from a horrible, intractable migraine right now, so I’m keeping this one short. I don’t know what I’d do without my cat Candy. My best self-care option is her on my lap while I read, play videogames, watch TV/movies, or listen to music. She makes me feel so much better.
Day 27: Supports/Aids
Here are a bunch of pictures of me with various supports. 1. HurryCane at the Peabody Essex Museum 2. Knee and ankle braces in a Hospital Glam pose 3. Bledsoe brace and Candy O. 4. In NYC with friends and my rollator 5. My cats Ada Monroe (gifted to me by another support Lisa Love 💗) and Candy O. 6. “Dancing” with my HurryCane (decorated in blue roses) and my husband at our wedding. Photo by the lovely Jessica Cronin Photography.
Day 28: Act of Kindness
I didn’t know what to put for this prompt so I talked with my partner. He said, “You help LGBTQ kids at the library.” My response was that it was my job and that it didn’t count. He thinks it does. 🤷🏻♀️
Here’s what I do: I work part-time at a library. Since 2018, I’ve been facilitating an LGBTQ+ youth group. At my previous university library, I was trained as part of the university’s “Rainbow Network” to support LGBTQ+ college students, and I’m bi with a transgender family member, so it was a natural fit when I started working at a public library to work with LGBTQ+ youth.
Pre-pandemic, we met in person and would watch movies, do arts and crafts, have guest speakers, etc. Since the pandemic, we’ve been meeting via Zoom. They’re such a great group of kids and I love seeing them thrive. I’m very protective of them.
Day 29: Research Hopes for Our Future
I wish that there was something life-changing like Fasenra for EDS. Since I’ve been on Fasenra injections for eosinophilia my allergies and asthma have been so much better. When I see @wheelchair_rapunzel improving with her “twerk juice,” I hope for something like that! Imagine if the collagen could be replenished? If our unstable joints could become stable? If we didn’t have to go through painful surgeries to replace worn out joints and tendons at young ages? I believe in you, science! You can do it!
Day 30: What Is EDS Echo?
“EDS ECHO® a program for healthcare professionals across all disciplines who want to improve their ability to care for people with EDS, HSD and associated symptoms and conditions.” (Taken from their website)
Day 31: Community
Though I haven’t met many of my fellow EDSers in person, I do feel like I have a great little community here online! We’re able to support each other with tips, tricks, and simply commiserating! Who ever knew that @ryan_the_zebra_dulcimist was my twin? Or that @librarychristi and I have more in common than library stuff? @heytrollop has given me countless helpful recommendations! And of course I’m eternally thankful for @karolynprg for her #HospitalGlam inspiration! I know I’m forgetting others that I have connections with, but I am a bit POTSie at the moment. I’m so thankful for my online EDS community and my online friends in general! You all support me and/or let me live vicariously through you.