Disjointed Mama

With Ehlers Danlos Syndrome everyday is a surprise as to what it will bring and how my body will handle it. Most people I know who suffer from a chronic illness or pain don't like to complain about their pain nor do we enthusiastically share our newest and medically unexplained ailment like we are in a competition for who is toughest for making it through the day. We are silent warriors, who know all too often that the price for what we accomplish today will come due tomorrow. When you suffer from a chronic illness and are also a parent, you have the added fun of trying to balance being the parent you want to be with the parent you are physically/emotionally capable of being at any given moment. And that is a tough thing to understand as an adult, let along for your kids who can struggle to understand why yesterday you could play catch and today you aren't up for it. There are everyday niceties that people exchange with their loved ones, their friends and colleagues that, fo...

To the diagnosis that changed my life but doesn’t define me: When I first heard your name and started to learn about you, I actually felt a twinge of excitement. That’s right, excitement. For more than six years, I had chronic and escalating pain in my joints, experiencing numerous dislocations and subluxations – literally from my head to my toes. Your name,  Ehlers-Danlos syndrome  (EDS), didn’t scare me at first. It didn’t make me angry or sad. I had felt angry, sad and confused for years; what I felt was, for the first time in a long time, relief. Your name gave me back my sanity, my faith in myself and a path to follow. For years, doctors brushed off my suffering as either an exaggeration or delusion. No one could visibly see why my body was failing to stay together, and no tests were able to show why I reported such high and  chronic pain . So when the geneticist told me I had this heritable connective tissue disorder — that essentially the collagen that comp...