A Deadly Game of Hide-and-Go-Seek

Today is one of those days when I wake up and have to actually look to see if I have forgotten to remove supportive tape from my fingers.

My once graceful, thin fingers have become clubs of clumsy sausage, straining their casings. The sensation of tightness is so foreign, but so real, as I notice that the sides of the swollen, red sausages are peeling as my body seeks to release the surface tension.

Beyond the appearance is the usability issue, which is ever so frustrating. For the second time in a week, the clumsy clubs have dropped nearly full bottles of meds, sending them spraying over the bathroom floor. Today's hide-and-go-seek game was with some small, white caplets...

Now, it's not so much that I mind rescuing these little guys from their cozy spots, nestled deep behind the seat of the toilet or resting precipitously on the edge of the sink drain. (Of course, I must dust them off and dry them out to save for taking later, as controlled substances are not likely to be refilled ahead of schedule, just because they've visited the potty.) It's the sheer gut-wrenching terror of the very real possibility that I will miss seeing one of the little buggers and one of our bottom-feeder dogs won't.

To have this ailment is one thing; to know that the failings of my hands led to the death of one of the only "babies" I will ever know is quite another.

Hopefully I managed to retrieve every last one, as it's time to craft a final paper for a Com590 Crisis Communications class, all the while praying that crisis doesn't hit home.

Morning Glories and Ankles

It's a crisp October morning; the morning glories that sprawl across the fence have stopped their ritual of closing at night. Even flowers tire of the things they are genetically coded to do.

My appointment this morning is to discuss the breakdown of my right ankle. I read the doctor's report of his plans for this latest repair. Another surgery, another temporary fix.

What I thought would be a simple scope plucking of a single bone spur is really a full open, replete with a bone debriding of where the bones meet the ankle joint, somehow fixing the the two tendons that have split and are continuing their travels up my leg, and fishing out the multiple little spurs that have broken off and are causing the mess.

With EDS, we don't always heal properly, and this concern is why DoogieDoc wanted to wait - to talk to other docs that have done multiple previous surgeries on me to see what he was getting himself into.

To add to the fun, my precious little Beagle Bassett Bella is having surgery today as well, to remove mysterious lumps that are popping up on her little torso. I forgot about that - how could I forget that? Today is not a banner day.

My full-on breakdown and release of emotion yesterday didn't do the trick, and I worry that my outward PollyAnna attitude about all of this is starting to fade. I worry that my fix-it-all husband will become increasingly frustrated with a wife he can't fix. I am very concerned that my Mom will worry herself into another heart attack, as this will not be the end of the EDS battle.

My knees have both already lost their menisci and my shoulders crunch with the slightest movement. My left ankle tendons are tearing up my leg too - I can feel that, but like a child hiding a visit to the cookie jar, I am hiding that fact from others, and worse, myself.

I am so scared, and like EDS, there is no cure for that.