Although sleeping helps me feel my best, it is also my greatest adversary. Like many people with Ehlers-Danlos syndrome, chronic exhaustion is a constant battle. No matter how much sleep I get, I’m always tired. Add the fact that it’s crunch time at the end of a school year,…
Black and Blue Ribbons - a Column by Karen Del Vecchio
Sometimes I wonder how much of my Ehlers-Danlos syndrome (EDS) is visible to others. Apart from the obvious things, like my bruising, I think much goes unnoticed. This is partly because I have more moderate EDS, so I don’t have as many visible features as those with more severe cases.
Several years ago I learned an important distinction about positivity. For a long time, I had thought that positivity meant ignoring what was upsetting or not going right so that you could “pretend” to be happy. I had always thought that was somewhat ridiculous, because pretending that the negatives don’t…
The past few weeks have been a whirlwind. As part of my job as a college counselor, I’m working with high school seniors to help them make college decisions. As someone who lives and works on a farm, spring is, of course, when chores multiply. May is always exceptionally busy…
I know I write frequently about my massages, but that’s because they are the only treatment available to me, and they keep my pain level under control. This is one reason I find it so frustrating that massage is rarely covered by health insurance. Because my rare disorder doesn’t…
After almost six weeks of being unable to get a massage because my therapist was injured, I finally got back in last week. I really needed it, as I’ve been dealing with a pain flare from getting stuck in the mud at the farm where I live. Most of…
I haven’t been sleeping restfully this week. I’ve been doing that whole wake-up-and-roll-back-over thing seemingly a dozen times a night. I’ve been dealing with a pain flare since I got stuck in some thick, deep mud in a pasture at the farm where I live and nearly pulled my…
Last week, I went to the dentist for the first time since the beginning of the pandemic. I had my regular cleaning just before everything shut down last year, and then dentists were either closed or working at reduced capacity for months. After my fall appointment was canceled, I joined…
Throughout the past week, the weather has been gorgeous. After weeks of seemingly endless rain, terrible mud that’s taken a real toll on me physically, and generally depressing weather, it’s been a true mood-lifter to see the sun and milder temperatures. I love many things about winter, such as soups…
This week has been busy. After all the rain we’ve had in the mid-Atlantic region recently, the ground is soaking wet, but we’ve finally had a few days in a row without rain, and the sun has been shining. It’s been amazing! I’ve tried…
Recent Posts
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- Global study reveals the complex web of health issues linked to hEDS February 5, 2026
- 73% of EDS patients second-guess pain, often after clinician skepticism: Study January 29, 2026
- My EDS pain seems to operate by different rules each day January 27, 2026
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- Another EDS flare is a real pain in the neck January 20, 2026
- Gut issues often drive hEDS patients to restrict their diets January 15, 2026
- I’ve been slowing down lately while continuing to recover from a fall January 13, 2026
- Compression garment use may reduce pain in hypermobile EDS, HSD: Study January 8, 2026