Disjointed Mama

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...

It's 6:15 p.m. and I've just walked in from a long day at work that was briefly interrupted for a physical therapy appointment to put my jaw back where it should be [read: TMJ EDS style is a hoot!].  The kids are running all over the place crazy - I think the sitter gave them speed, OK  not really but they are over the top today. I contemplate the pork chops I pulled out and calculate by the time I cook them and wait for my oven to warm up the kids and I should roughly be eating by their graduation from college (They are 6 and 4 years old). I opted for a good ole favorite in my house...Brinner! French toast here we come. So why is this worthy of noting? Well maybe because what started as a treat has quickly become my go to when I'm broken, tired, run down, had a long day...so what all that means is that brinner happens all too often in this EDS house. So I'm redefining life. Breakfast now happens at 6:00 p.m. And we shall have pork chops at 6:00 a.m. Except tha...

When you realize that the small little move you made, one normal everyday people make all the time, has completely undone your day. You wince and quickly follow it up with a smile so that your loved ones will not give you that look of sorrow. Or is it pity. Or anger. Either way, you grin and bear it because you are young, healthy, and by all accounts that small little thing shouldn't send excruciating pain down your spine. It's in that moment you remember you have Ehlers Danlos Syndrome, or EDS. The S here is important, particularly if you are female because with out the S you have ED...yup, erectile dysfunction. My big brother told his doctor his little sister had ED. Would have loved to see that guys face, but hey it was 2013!  So for those unfamiliar with Ehlers Danlos Syndrome let me give you the highlights. If you suffer from a heritable or chronic condition, even if it isn't EDS, you will likely feel like you can relate. EDS is a heritable connective tissue d...