So I’m going to try it.  What finally pushed me?  It was turning.  I was in the kitchen to get something, I don’t even remember what now.  Walked to the rack that had it and reached (not stretchy reaching, just reaching) for the thing and PING went something in my pelvis/abdomen.  I realized immediately that it was because my shoulders and hips were not lined up, see I had done the dread “turn and reach” maneuver that is apparently forbidden by my bastard body now.  It was not a far outside a normal range of motion turn and reach, but apparently it was enough.  And let’s be realistic here.  I have no clear sense of what is beyond a normal range of motion since a normal range of motion for me is apparently a crazy “go go gadget arm” motion for someone else.

I held my gut where the pain was, it’ll go away, I thought.  I’m a crazy optimist.  Breath, and pain.  Start to move leg, and pain.  Finally, I sat on the floor in the only comfortable position I could find (slightly leaned back, leg on the offending side out in front of me) and tried to relax out of whatever spasmy bullshit was happening.  Putting firm pressure over where it hurt helped.

That was Friday night.  It still hurts today.

One of the BATHs actually mentions EDS on their rehab medicine page and has a protocol for EDS, at least a somewhat encouraging sign.  When I called, I was very upfront about it.  “I have Ehlers Danlos, hypermobility type, and I have chronic pain.  I’ve been told to try to see someone in PT or rehab for some help.”   The secretary put me on hold for a minute, then said “Ok, sorry, I was just checking to make sure we do that.”  Slightly less encouraging, but it was not a long wait while she checked so I’m hopeful.  Also, she started to schedule me then said “No, wait, not with him.  He’s new.”  Also a good sign.  I do not want someone who has no idea what EDS is.  Or as my primary recently put it, “If you do PT, we’ve gotta find you someone who knows what this is so they don’t kill you.”

I’ve been feeling crappy the last few days.  I think it’s migraine, I’m not sleeping well.  Pain = poor sleep.  And so you can imagine my delight at being asked to attend a meeting in a far flung building which truly is uphill both ways on a day when they’re calling for first snow in my area.  Oh joy.  I feel like I am personally keeping the cabbies outside my building in business.  Did I mention it’s a “bring your own laptop” affair?  Yep.  Bring a laptop, because the boob who chose the room for this not only chose one far away from most of the staff who are being trained but also chose one without computers.  I’m pretty stressed about it since even walking for coffee yesterday was a massive and physically difficult achievement.  Coffee shop is only two blocks away on flat terrain.  By the time I got back to my building, I was literally holding on to the wall to keep from tipping over.  With regards to the trip uphill with laptop in the snow today, I feel like someone said “hey, you’re going to have to walk a tightrope today.  That’s ok, right?”

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  1. Ali R

     /  January 11, 2013

    I feel your pain..I was born with two birth defects. EDS and an Obstruction to my right kidney. The cause for that was my renal artery grew on top of my ureter. When they performed surgery, 4 incisions were made to cut my ureter and reattached it properly. I unfortunately, when I received the surgery 4 years ago, I didn’t know about the EDS. So 3 out of 4 incisions herniated. I’m stuck between a rock and a hard place, apparently one with EDS should avoid surgery unless its life threatening. So a life time of pain it is… Your not alone though. It’s a shame that doctors don’t know more about EDS. I was in and out of the hospital countless times all my life until finally at the age of 27 they figured it out.

    • Thank you for posting.

      That is a terrible spot to be in. I’ve been told that renal pain is a particularly bad one too. My little brother had a run in with it, a medication complication.

      I’ve been thinking about EDS and awareness. Someone asked me recently what my health issues were, well intended person but English was not her first language – interesting conversation. Anyhow, where I work, we sometimes have educational material on different diseases or conditions that we put up. E.g., when I first started there, someone had papered the waiting area with Lupus info. I was thinking of putting together some EDS info. This disease needs to come out of the shadows. Maybe someday someone who sat in my waiting area will supervise or parent a person with EDS and the info I put out there will help them recognize and understand it better. Who knows. Every little bit helps, right?


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