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Perhaps one of the toughest things about Ehlers-Danlos syndrome (EDS) is the chronic fatigue. It’s invisible, so those around you often don’t understand, and we live in a fast-paced world where there just aren’t enough hours in the day. I work full time as a college counselor at a…

As I’ve shared before, Pilates has been an enormous help in managing my Ehlers-Danlos syndrome (EDS). Although I was introduced to it as recently as December, I have noted improvements in my pain level after only a few sessions. The fact that I can actually do Pilates doesn’t make…

When you live on a farm, you are witness to many bizarre events. Animals are amazing and wonderful, but they have their moments and a baffling knack for getting into unusual situations. I have an apartment on a 17-acre horse farm that also has pigs, ducks, chickens, dogs, cats,…

A distressing observation A couple of nights ago, I watched my youngest child as she settled in to go to sleep. She wrestled with her pillow, trying to position it just so because it hurt her neck. In the process, she managed to hurt her chest. She adjusted herself and…

I can manage to do most of what I want to, despite my Ehlers-Danlos syndrome. Sometimes, though, I have to get creative to pull it off. Because my joints are too loose, my muscles overcompensate by tightening up — that’s one of the reasons why massage is so helpful.

Overall, things have been going great in my life. My new horse Cherry is learning quickly, my other horse Spots is healing, and Pilates and massages generally keep me pretty well put together. Nevertheless, at times my body decides it just doesn’t feel like cooperating and rebels. As…

I write quite a bit about looking for silver linings, embracing joy where I can find it, and celebrating small successes. I embrace thankfulness and enjoy a positive attitude. But before we go any further, I would like to clarify something important. It’s OK to experience and express negative…

Back in November when I fell off my horse Spotty, I badly sprained my left medial collateral ligament and my right ankle. I could barely walk. Limping was entertaining because I didn’t have a “good” leg to limp on. Crutches wouldn’t have helped — with no good leg, there…

One common issue that many people with an Ehlers-Danlos syndrome (EDS) deal with is that we “look normal.” While I’m grateful that it’s not blatantly obvious to most people that I have EDS, there are times when it can make things awkward. That well-meaning person who says, “One day you’ll…

There was a time when lampworking was my thing. In fact, my life revolved around it. What began as a hobby grew into a business. When I wasn’t behind a flame melting glass, I was on the phone or on internet message boards furthering my knowledge and sharing it with…