I have been using my Silver Ring Splints for over 5 years now. This year, I had to add 8 more to my collection as my hands continue to degrade. I deeply appreciate their support as I have reached a point where I cannot write without them due to my […]
hEDS and HMS
28 posts
I know not everyone is a Shakespeare fan, but bear with me for a moment. Whether ’tis nobler in the mind to sufferThe slings and arrows of outrageous fortune,Or to take arms against a sea of troublesAnd by opposing end them. To die—to sleep,No more; and by a sleep to […]
Thank the gods for speech to text in this moment. Friday, my hands started to get little tiny blisters on the joints. This is something I’m familiar with as dyshidrotic eczema. It can happen for any number of reasons and I’ve gotten to know (or thought I did) most of […]
You know those videos of injured runners at places like the Olympics? The ones where the runner refuses to quit, even though they’ve obviously hurt themselves badly? This video from the 1992 Olympics is the kind of thing I am thinking about: https://youtu.be/t2G8KVzTwfw Derek Redmond hurts himself, and he refuses […]
It’s a very natural thing, when bad things happen, to ask “Why me?” We try to make sense of the chaos that can be Ehlers-Danlos (or other rare disorders). One evening, a friend of mine and I were discussing that frustration. I was having ankle complications that even one of […]
One of the most difficult lessons I’ve had to learn since being diagnosed with Ehlers-Danlos Syndrome (EDS), is to be patient and give myself ample time to rest after an injury. Part of this was a constant drive to push past pain to appear normal. The other part was facing […]
A few ankle surgeries back, it was suggested that I look into Smart Crutches. I had seen them mentioned in EDS groups and I’ve got a zebra sister with them that loved them. I knew my hips and knees were not taking the knee scooter well and I needed to […]
We’ve had some really intense weather shifts that have left me wanting to crawl in bed and stay there. Even as I type this, I feel an intense pressure at the back of my skull, my left hip is grinding every time I shift my weight, my right foot just […]
When I first started this site, I wrote about the EDS specific surgery I got for my ankles. Before I continue here, I want to be very clear that I in no way regret getting the surgeries and I will still, if your doctor suggests it, recommend it in a […]
It came up several times in conversations recently, that my ability to tolerate pain is something to aspire to. Each time someone says it, it’s like a punch to the gut. Which, I realize can be an odd thing to say. A high pain tolerance sounds like a super power […]