On further reflection I realize how much I withheld from my last post here. I wasn’t ready for details on specific diagnoses and symptoms. I am also surprised at the level of stress it has caused. You would think that nearly forty-five years of dialog about how to live with EDS would make writing it down easier, but it isn’t somehow. I feel so much more vulnerable than when I blogged about my trek into the Cancer universe. Getting down and dirty, the secret of who I am every day is intimidating. I’m fearful of uncovering the true mess of me. Displaying it all. But why is that scary? Emotions are never a frightening prospect in my world. They are one of the few things I do well. Sometime too well. I think one of my hangups is how I feel shame for not thriving more when there are so many more people with diseases and problems that are so much more severe. Not judging myself, learning to be present and grateful for the moment are my daily goals.
To clear up why I was at the doc’s, it was to rule out an Aortic Dissection. Dissections are more and more common with EDS patients as they age. They are tears in the aorta causing leaks and are high risk with Vascular Type EDS which I have crossover with Classic and Hypermobility. So, when a new and persistent chest pain cropped up I worried. I tried to ignore it. The great news was that I was reassured that my EKG was rock solid and all my pain was the same old dislocated ribs and discs and yada yada. I could have said all this in the other blog, yet I didn’t. I was annoyed with myself. Annoyed and tired once again. Which I will be, again. Nearly forty-five years and I’m still learning. I can honestly say I am grateful for all I know. I mean that with all of my rock solid EKG.
Look who’s back. Back again. I’m not the real Slim Shady, I also don’t play one on TV and I’ll have that song stuck in my head now for at least three days. I’m mostly writing this so my Uncle Frank can rest easily tonight. I’m nice like that, and I have my goal/mission to complete.
With Ehlers-Danlos comes lots of pain. In lots of places. I don’t mean to say Saskatoon. Okay maybe Saskatoon. Places as in the topography of my body. It hurts. All. The. Time. The struggle with the constant stream of pain is deciphering new pain being layered on top of old. Decoding my normal abnormal from possible and new and dangerous abnormal abnormal. Second judgements and talking out of concerns or into some. Should I care about this new pain as much as the last time? Should I bother with the doctor or another ER visit? Nah. It will be nothing (nothing meaning EDS and there isn’t much else to do but slap a pain pill on it.) So, I hem. Then I haw. Then I hurt and hurt until I finally give in (that’s how I look at it anyway) and I go to the doc. I decide I’d rather look foolish than dead.
I’m not dead. I’m not foolish either.
Okay, maybe not %100 foolish. More like %70/30.
Here I go into the land of another blog. This time under the direction and intent to use it for my Ehlers-Danlos Syndrome struggles, travails, opinions, brick walls, epiphanies, gut-wrenching fears and bottomless streaming gratitude that strides alongside. The title comes from my Family Practitioner Dr.Grover when I was only twelve and problem after problem kept cropping up. One dislocation after another, my heart beating so fast I passed out at school, on and on. The decision was made for my Mom and I to take a trip to the Mayo Clinic to see the uber specialists and then maybe get some definite answers that a small town doc in Preston, Idaho couldn’t provide. During the visit, as he checked my stretchy skin, my extra lax joints and my heart, Dr. Grover looked at both my Mom and I and said “There isn’t much else to say other than you’re the loosest girl in town.” My Mom and I have giggled about that ever since.
I marvel at how much I laugh about EDS. I laugh a whole lot more than I cry. But, I do cry and I many times stop myself from crying because it is exhausting and frankly I get tired of being sad about EDS. Tired of being irritated and my most used word to describe my emotional state when EDS is the issue is “Cranky.” I think separating my writing this way might help. With the crankiness. I put this pressure on myself to not let the crankiness about EDS show. The pain and the disgust with “are you kidding me with another subluxation” turns into a metaphorical shoulder shrug that lasts for a week. While I laugh at the ridiculousness of it all, and hold tight all I have, and kiss my bunnies and send everyone I love a ton of messages because I’m in bed. Again.
I’m hoping I do the concept of this blog justice. I’m also hoping I’m too busy to never write another post.