5: Flashback - April 2025, The First Major Setback And a New Plan
As I said in my first post: “There will be highs and lows, victories and setbacks, smooth paths and seemingly insurmountable obstacles.”
Well, we’ve come to our first real setback and perhaps even an insurmountable obstacle. Honestly, it’s tough to talk about and even harder to write about. But if sharing this helps just one person feel seen or inspired, it’s worth it. So, here’s the down and dirty.
Trigger warning: I’ll be talking about medical PTSD in this post.
Setting the Stage
I’ve been in physical therapy for my hip due to a labral tear (just EDS things). The focus has been on keeping that joint healthy, strengthening everything, and preparing my body for the Everest Base Camp trek. Part of that prep included working on squats specifically to help me use an Eastern-style squat toilet on the trek, since that’s common along the route.
Since around last September, my right ankle the “bad one” started hurting more. The swelling increased, and my lack of range of motion was making squats and other functional exercises difficult. After talking it over with my PT, we decided it was time to see my orthopedic surgeon just to make sure everything was okay.
February 11, 2025
I went to see my orthopedic surgeon at Boston Children’s, the one who’s done several of my surgeries and whom I’ve known since I was 13.
He found that while my joint seemed stable, my ankle’s mobility was really limited even with passive range of motion. Imaging was definitely needed.
This was the first time I’d seen him since so much had changed in my life: moving to Florida and back, losing 140 pounds, reclaiming my health, getting married, and somehow earning a PhD in the middle of all that. He was genuinely excited for me. He even shared that he and the other surgeon who operated on me in 2020 have talked about me over the years, wondering how I was doing.
He told me that what happened during that 2020 surgery still stays with them both, a reminder of how despite best efforts, things can go wrong. It’s a true example of the Swiss cheese model, where errors or failures happen not from a single mistake, but when multiple small vulnerabilities line up at once like holes in slices of Swiss cheese, allowing harm to pass through.
I felt validated. My struggles weren’t in my head. But just being in the hospital triggered waves of panic. Medical PTSD is real, especially for those of us with chronic illness who’ve spent so much time in the healthcare system. I had a full panic attack just walking into the building, froze in the elevator, went up and down several times before I could get myself to the clinic.
We tentatively set an April 14 surgery date just in case the imaging showed we’d need it, to give me the best chance at healing and staying on track for the trek in October. My surgeon was supportive and excited about the goal.
February 12, 2025
I had my X-ray and MRI less than 24 hours after seeing the surgeon, which is wild. This time, I was at the Boston location, the scene of the 2020 saga. Walking through those doors brought a flood of emotions.
On one hand, I’m this successful nursing leader now, leading change, supporting nurses and patients. But at the same time, I was stepping back into the place where my life changed. Where diagnosis after diagnosis hit me. Where I became the patient in ways I never imagined.
The memories, the flashbacks, they came rushing back. The body keeps score. And mine definitely remembered.
But I made it through. And at my evening MRI, when the tech asked what I wanted to listen to, I chose the Hamilton soundtrack. That helped me find my safe space and remember this is why I’m doing this. (More on Hamilton in a future post!)
February 14, 2025
I had a virtual follow-up. The results: bone spurs, an avulsion injury I didn’t even know I had, possible tearing, and significantly decreased joint space.
So surgery it is. They’ll go in to debride (clean up the joint) and repair what they can.
This felt like a major setback. A disappointment. Another moment where it felt like my body had failed me. I can’t control bone spurs. I can’t control an avulsion injury I didn’t even know I had. I’ve been doing everything right and yet, here we are again.
Feelings
This has been a hard one. It feels like my body failed me again. But I know I’m doing what I can. I’ve been proactive. I’ve been working hard.
It’s frustrating. But this is reality, and it’s why I’m sharing it. Life is hard. For most of us. And that’s okay. It’s okay to acknowledge that.
The feelings this stirred up have been challenging, but my support system, especially my family and friends, has helped me make it through day by day. I’ve anticipated the panic attacks and the sadness, and I’m treating them as proactively as I can.
The Plan
We’re moving forward with surgery on April 14. My surgeon will debride, repair what’s possible, and we’ll go from there.
As always with EDS, what should be a simple surgery isn’t simple. I’m working through consults with specialists, getting tests, having infusions, all to make sure I’m ready. It’s overwhelming. Juggling all of this, work, and teaching is a lot.
But I’m managing, thanks to my incredibly supportive husband. Fun fact: we actually started dating after he texted me post-op from my endometriosis surgery in 2012.
After surgery, I’ll stay inpatient for pain control, probably go home with a continuous nerve block to help minimize opioid use, and then enter what I’m calling my healing era.
Training
The plan is to keep up my strength. We’ll continue functional exercises so I don’t lose progress. After surgery, once I’m cleared, I’ll aim to return to biking or swimming to maintain cardio fitness.
I’m so grateful to have a care team that supports this big, wild dream.
Overall
From the start, I knew this journey would be hard. Nothing happens overnight. And nothing happens alone. We all need support.
To quote Star Wars: “Revolutions are built on hope.” For me, that hope is to, as my medical assistant put it the other day, maximize life. Or as she likes to call it, life-maxing.
