Disjointed Mama

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

So they say if you have Ehlers Danlos Syndrome (EDS) that you are like a zebra. Why may you ask? Is it because we are really good at camouflaging ourselves? No. Because we have a fascination with black and white color schemes? No. We are all criminals destined for a life behind bars dragging our proverbial ball and chain? No. Nothing that cool. We are zebras because when we go to doctors and say "this hurts and that hurts" they usually say they don't see anything wrong and if it gallops like a horse and sounds like a horse it must be a horse. But the problem with EDS is that we aren't horses...we gallop like horses, we sound like horses, and we even look a little like a horse, but we are zebras. Get it? Yeah, me too. I mean I get it. After seven years of being given endless dismissals from doctors we finally have some answers. But honestly, I would have picked a cooler mascot, maybe a leopard. There are many shades, different spots, and lets face it they are fier