An avid equestrian and educator, Karen has been a columnist at BioNews — the publisher of this site — since 2019. She was diagnosed with Ehlers-Danlos syndrome in 2009 after years of searching for a diagnosis that explained her symptoms. Karen enjoys working with her students, riding and caring for her two horses (Cherry and Spotty), and connecting with others in the rare disease community through her writing.I’ve been managing some unusual pain issues over the past few weeks. It’s rare that I don’t feel better after a massage, but two weeks ago, that happened. Even after a few days, my pain wasn’t improving. It felt like I hadn’t even had a massage. I couldn’t…
I’ve been managing some funky, twisted body things recently. One of those has been manifesting in my back, and it feels bizarre. About a third to halfway down my spine, there’s an area that has a lot of scar tissue and muscle damage, and it feels like concentric circles…
I usually know when I’m crooked. When my body has been pulled out of alignment in a variety of ways, it’s usually pretty clear. But during my latest massage to treat the symptoms of my Ehlers-Danlos syndrome, something unusual happened. As I was lying on my…
I’ve often said that chronic fatigue is the toughest part of having Ehlers-Danlos syndrome. It’s exhausting being tired all the time! As a high school teacher and post-graduate counselor, this time of year is especially draining, as it’s full speed ahead to the finish line of graduation.
I’m pretty sure that if I were an instrument, I’d be an accordion: stretched out on one side, squinched up on the other. Sometimes as I walk along, in fact, I can actually experience myself as twisted. When standing up straight recently, I felt that my right hip and…
As a teacher and postgraduate counselor, I’m used to going nonstop this time of year, but I still try to at least glance at a number of publications to stay on top of what’s happening in the world of education. Sometimes these news outlets highlight short excerpts about important research.
The past few weeks have been a roller coaster ride for me: I’ve been stressed at work and home and faced a pain flare to boot. But lately, things have been trending up. I’ve been thinking, however, that sometimes my pain flares feel different from each other. One…
Sometimes my Ehlers-Danlos syndrome (EDS) manifests in unexpected ways. While dealing with a pain flare and a lot of stress at work recently, I started to notice more pain in my right elbow. I was hoping it would decline as my flare subsided, and while it’s certainly better,…
After a tough couple of weeks, life is finally starting to settle back down for me. I’m less stressed, my bruises from a recent fall are healing, and I’m feeling better. It’s taken some time, but I’m on the upswing. During an Ehlers-Danlos syndrome (EDS) pain flare,…
As I landed face first in the cold mud, I was at least glad that the ground was soft and not frozen. While I marveled at the lack of awareness that led to me tripping and crashing, I was also thinking I had hit my threshold for crappy moments. I’ve…
Get regular updates to your inbox.