Tuesday, March 1, 2011

One Happy, Hot Mess

It's frustrating when you know that your body is weird, but downright scary when you find new things that you thought you were "normal" (that aren't) that make you an even bigger bodyfreak.

Aside from the standard dislocations; my fingers - the left pinky finger is the worst today (being able to slide the small metacarpophalangeal joint so far that the first metaphalangeal slides above the knuckle), the ol' party trick of the past - the amazing dislocating hips (hey now, you dirty pervert, it wasn't like THAT!), and feet that regularly dislo just walking down a flight of stairs, the discovery of newly degenerating tissue in fingers and toes that fold backward at a 90-degree angle (I once thought everyone's did...) as well as feet and hands that fold in half, the long way.

The rate at which bone spurs are forming in the cartilege-depleted spaces between my bones is terrifying. We are waiting to see if my right hand just fuses together in the coming year or two, and my thumbs are so severely spurred that they awaken me with pain in the middle of the night. Most zippers are already out of the question, save ones with very large pulls or ones that I have replaced with OfficeMax binder rings.

The impending loss of the use of my thumbs seems to shear off a certain element of my humanity. Just for fun - and to give a taste of what vexes me these days - here are a few things to try sans thumbs: putting on socks, squeezing toothpaste, writing with a pen, holding a book, lifting a pot from the stove, loading the dishwasher... Fun, eh?

So, you'll see more tape again in the coming weeks. More Oval-8's (braces that keep fingers from flipping backward). I shall have the distinct sweet/pungent aroma of Vera Wang Sheer Veil and IcyHot. I will continue to wear yoga pants and fleece because they have no zippers or buttons; struggle to fight on socks; wear my hair in some messy up-do that doesn't require using a blowdryer and round brush.

So with all the crappiness, really, what can I do?
*I can show my mother how much I appreciate her lifelong love and support by listening and simply spending time together.
*I can be a devoted and loving wife to my understanding and compassionate husband.
*I can hug my dogs, even when there are days when I have little feeling in my fingers and my arms tingle with that icky pins-and-needles feeling.
*I can volunteer - sitting and greeting people whose lives have much greater degrees of difficulty than my own.
*I can appreciate and I can love, and those things can and will never be taken from me.

I may be a smelly, fleecy hot mess, but I'm a happy hot mess.


  1. I love every ounce of your fleecy hot mess!

    I do find it remarkable how you find the silver lining in things and stretch yourself to see beyond your pain. Girly.. I can't even imagine what you're going through and I'd never be as strong as you are about it. I HATE that you have EDS. I don't understand why anyone has to live their lives this way. It makes me shake my fist at God in utter questioning... Full knowing that He loves us, and probably even more when we're real with Him and shake our fist at him. I don't get it.. but He does. And I DO trust that He will be with you all the way through this - wherever it takes you.

    Tape it up girl. Smell like IcyHot and lean on a friend whenever you need.

    The doggy playdate is ON! Just name the time and day and I'll be up there.

  2. My sweet, sweet friend, Cami. I love you so much!

    There is a reason for this; be it a lesson for me to learn, something I shall teach another, or just to serve as a warning beacon :)

    I trust Him, love Him, "no matter what." That song keeps me going, as do friends like you.

    Play soon? I wanna get me jammajeans ON! lol xoxo e


I welcome you to add comments, suggestions and resources you think may be helpful for those with EDS, and always appreciate your thoughts and prayers.