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.

I wish this for you, without the pain, without the tears.

I have discovered what it's like to have my "normal" create sadness within others, and I don't like it. Good Midwestern Irish/Germans do their right best to make other people feel comfortable, not make them cry.

My precious mamma sobbed this weekend. People I've never met at Mom's church teared up meeting me, and said that they are praying for me; I made my friends Aimee and Cathy tear up yesterday; and all of these tears just break my heart.

How does one adequately lie and tell others that everything will be okay - that things are good? I dread this upcoming surgery, as I have no idea how I will bolt it on through what promises to be exquisite discomfort. I simply can't bear to see more people sad about this.

Several people have asked about how one keeps a positive attitude when their body is literally falling apart before their eyes, and the answer is simple. The alternative sucks.

If the desire to curl up in a fetal ball in a dark room under a mountain of covers feeling sorry for myself ever takes over, I do it. Alone. Yes, that really happens, but who wants to be around that person? I sure as hell don't.

The sunny disposition is not an act, however. It's a newfound appreciation for the things in life I took for granted for 40 years. Don't become the person that makes others cry before you discover truly being present in your life to enjoy these simple things:

The color of the sky in the morning
Shapes that clouds make
The intricate veining of every individual leaf
The amazing softness of your pets
The warmth of a doggie belly
The sound of a bumblebee
Cultivating a garden
Basil and Ginger
Umami
The feel of a breeze
Moving a joint without pain
Yoga's Savasana
The breath of a sleeping loved one on your skin
The smells during cooking
8,000,000 other things

It's not focusing on the things I can no longer do that I loved, but discovering the joy in the things I've always had and never realized. I wish this for you, without the pain, without the tears.

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.

Oops! I couldda had a C8!

Dang head stem. If someone told me that my head's not screwed on straight - they'd be right.

My neck decided to go ahead and age 30 years ahead of the rest of my body.

The doc said it's like trying to balance a bowling ball on a -35 degree angled post. Superb analogy, eh?

Here I sit, ol' bowling ball permanently fused forward like I'm waiting for something. Godot?

The problem comes in that the vertebra that is most affected is the C8. Don't worry, I had no idea what that meant either... Just don't ask me to hold your baby or Fabergé egg collection. Definitely not a good option. That little bony bit at the base of my bowling ball pole holds the nerves that control the hands.

Yup, I'm a dropper. Just randomly, the signals coming through the 8 decide to detour to goodness knows where, and my hands just release. Thank God Dexa over at Kowalski's in White Bear Lake just happens to be the Queen of Cool. She barely batted an eye when I dropped my basket containing white-hot Minestrone, a full pint of blueberries and some schmancy expensive homemade Graham crackers into the shiny-new cheese case display she was showing me.

Aside from spilling nearly every glass at the table when we dine out, I can no longer tell which finger is which when putting on gloves. Guess I'll have to make the move to mittens this year... I'm considering getting ones with the string. I always wanted those as a kid - right around the same time I was famous for my Angus Young impression.

The View from Butt-Level

I have a whole new appreciation for a child's viewpoint. You can't see what's ahead of you, someone is leading (or pushing) you wherever you go, and the view really isn't all that great. The world becomes a sea of backsides.

My right ankle recently decided to join the EDS party, and so we are now looking for wheelchairs. It's really the only way we can envision being able to do the things we used to do that require more walking than a trip to the grocery store.

As I watch my bony, crooked fingers type, I know that I won't be able to roll myself more than a few feet, and I will be dependent on a pusher. I worry what other things will evaporate from my repertoire of independence, and am starting to realize the implications of this disability thing.

An email from my awesome doc at Mayo confirmed that I should begin the process of applying for permanent disability license plates. It's hard seeing your future in the cold glow of the computer screen.

So I think I have my new ride picked out. It's a snappy little blue number.