Monday, December 20, 2010

Perspective can really screw with you

It's snowing outside right now.  Winter is really here and I've been feeling it in my joints and hands.  My fingers keep dislocating today which I figure really should be impossible with how swollen they are.  I can barely bend them--how can they bend out of place on with the tiniest pressure? 

I'm losing ground on my hands.  It's because of the winter, I know.  I wake up too early and turn over, reach to bring the blankets with me and there it is: my fingers don't bend.  I can't grab the blanket.  My hands is just this throbbing paddle.  Like a little, "Good morning.  You have this disease, remember?"  And right now that freaks me out.  It didn't a month ago.  But a month ago, I could use my fingers before 2pm.  I'm full up on anti--inflamatories, epilepsy drugs, and malaria cures but winter is bringing in the breakthrough stiffness.  I'm sure it will go away, but I'm just buckling down for a rough ride 'til spring.

And I don't have a doctor yet.  I know I should probably make that call soon, but I just keep putting it off.  I keep hearing the bad doctors in my head.  I'm not in the mood to train another one to listen to me.

I had my meeting with Human Services.  They needed me to fill out a bunch of paperwork, but I could barely hold a pen.  She spent time filling it out for me, so all I had to do was sign.  They gave me emergency funding to get through the month because of the stupid SSI debacle.  Now it's just more waiting.  

My friend recently posted on Facebook a picture of her hand with a bandaid on the tip of her ring finger.  Her post read, "My double finger scroll finger is out of commission. Never realizing how often I did this before; I am amazed by my right hand ring finger's importance. Show some appreciation to this finger today Mac users."

I read that and I couldn't stop laughing.  It seemed so ridiculous.  Like if Paris Hilton were to post about having to wear the same pair of jeans twice and really gaining perspective from it.

And then I couldn't stop crying.  It's funny how my little Pity Pigmy only sneaks out of the cell I've locked him into when I remember that things aren't like this for other people.  I forget and think this is just how things are.  That my body isn't that messed up, but I guess I kind of am.  And other people aren't like this.  That losing one finger can really throw off someone's day.  Appreciate everything, everyone. 

All I want to do right now is do things with my hands.  As soon as they start moving in the afternoon it's time for stretches and exercises, then I crochet until they swell up again at night.  It's like I need to make things out of nothing.  Need to take a ball of yarn and make something that will keep my wife warm.  Need to take a pile of old newspapers and flour and water and build things.  I know it's transparent in motive but it's a very strong need.    I'll hopefully have some pictures posted soon of my cripply creations.

Trying to stay positive like the rest of my bendy buddies.  I really wish I could find a bendy group near me.  Sometimes it feels hard to hold each other up from afar. 


  1. I'm here. I am 3000 miles away, but I'm here. I know how it feels when someone throws you off like that. I watched someone try to go through a day with a splint on their finger, because it had dislocated, and I'm sitting here thinking "A splint? For a dislocated finger? Wimp." Then looking at my bendy body, and remembering the first time I dislocated a finger; it was a big deal back then. I was traumatized. I was all "holy crap I dislocated my finger, what am I going to do now?!?!?" And these days it's just *snap* disocated... *snap* relocated... Go about my day. But with 20 different joints (most of them much bigger than a finger).

    Don't try to pick up coffee or tea one-handed. It is HOT when you dislocate a finger, and spill it all over yourself.


  2. Thanks, love! That really does mean a lot to me. I'm here too if you need me. I'm feeling a lot more upbeat today.

    When I lost most of the use of my right hand I was devastated and cherished my clumsy left hand. I was sure that if I lost use of my left hand too, I'd just have to lay down and die. And then the disease spread to my left hand and here I am still. Hell, I'm crocheting wrist-warmers with my cripply hands!

    And I have so done the hot coffee spill. And the ice water spill. And the bowl full of soup spill. XD You just have to laugh about it.

    Many HUGS back!

  3. i've been out of commission for a while, so i missed ALL of your recent posts.g-d damn, i'm just so sorry!! losing insurance is a nightmare i've been through when i wasn't nearly as gimpy as i am now. moving to a new place can be wonderful and scary when you're well and able-bodied; when that's not the case it tips the scales a little more to the scary. despite all this, i have faith that life will get easier for you--it's just hard to see it. email me ( if you need anything. i'm pretty resourceful and can empathize with the havoc new england winters cause for us bendy folk. hang in there!