2 weeks...

I saw the doctor today. I've been put on two weeks leave from work, to focus on my health. I'm not gonna lie, it's a hard pill to swallow to admit that all my efforts over the past few month haven't been enough to pull me through, and they also haven't helped me take care of myself. All my efforts have backfired on me, and it's causing a faster breakdown.

sigh.

I wonder if I'll finally have the energy to make food for myself. I wonder if I'll get anything done. I wonder if I'm going to have renewed energy to try again and have better balance, or if this time off is going to reassure me that I really do need to fight tooth and nail for disability again.

I've got two weeks to figure it out.

The fight for "Control" and "Normal"

I'm paying for the long weekend excursion of the Birthday party.

It's not pretty.

For the first time ever I've given in to the pain and I'm wearing my bulky white "LOOK AT ME!!!!" cervical collar at work. Learning to honor my body's limitations is a biotch. I constantly juggle pride, pain, need and wants all in the effort to achieve "Control" and "Normal". I read an awesome article that related chronic illness and embarrassment and it sums it up in a very healthy way. (http://chroniccurve.tumblr.com/post/15070372449/embarrassment-and-chronic-illness)

I came in to work, pulled up in the parking lot and all I could remember was the fight I had with myself the first time I used my cane in the work place:

Brain: "Everyone's going to stare at you."
Beth: "They won't stare for more than a moment in shock."
Brain: "They're going to want to know what happened. If you were in an accident. They're going to be nosy and you'll have to answer them all."
Beth: "They're going to be curious and worried for me. They're not going to be nosy. I'll just have to tell them.
Brain: "You know it's not fair that you have to advocate everywhere you go. Just keep the cane in the car. You only wobble a bit, the pain is nothing. You've hidden pain before. You haven't fallen this week. You can just keep it in the car."
Beth: "Bite me. I'm going in."


When I got inside, of course I clocked in as fast as I could, used the least used hallways, ducked into bathrooms when I heard footfalls and finally arrived at my cubicle. I was able to get by without a single comment for all of 30 minutes.

People are naturally curious. It's not a sin or a shortcoming. It's a gift. It helps us check into the softer side of our nature with compassion or to analyze problems. Sometimes curiosity leads to great discoveries.

It's hard to choke back pride and the desire for self resiliance when your body is failing you though. It's hard to push on with bravado when you don't want anyone to pry. The first encounter with someone commenting on my cane was a trusted friend at work and he saw me walking from up ahead of him. "I don't like that, Ms. Beth!" he called out. I answered as cockily as I could with a wink: "Nobody asked you. I love the butterfly design." (He only meant he didn't like that my illness was affecting me so much.)

I'm constantly facing the truth that I can't really fight for "Normal" and "Control". It will burn me faster than jumping into a bonfire. I battled the choice to get a service dog for so long I've driven everyone I know to the brink of their ability to be patient with my waffling back and forth! And then it was: "Do I go with this agency? Do you think we can go without one? Can we afford a dog? Will work allow it, or will they find a way to phase out my job posistion (like what happened to a dear friend)?"

Every single day is full of choices. Sometimes I get so freaking sick of all the 50/50 of my life. Today's choice was unbearable pain in my neck, or open myself up to comments and concern but be in less pain. I chose less pain.

I'm the farthest thing from a role model, but Spoonies, PLEASE choose in favor of honoring your health - be it mental or physical. Otherwise your body/mind will beat you to a pulp. I promise the comments and concern sting less than the flames of a bonfire that will burn around you if you chase "Normal" or being in "Control".

Our friend "H"

Our friend, "H" came by today and brought Charlie a rawhide treat! It's his first rawhide ever - and I think he's in love. I wish I could have been there to visit with H and see Charlie's reaction first hand, but I'm sure he'll hand me a slobbery mess of rawhide when I do get there. LOL!

Look at his coat! It's so shiny and healthy! I was petting his ears this morning when I dropped him off with Granddaddy Dadid, and I didn't want to go. I had errands to run before work, but I just felt like staying curled up in a ball with my boy. So far two guests have RSVP'd to his party! I went and got the plates, napkins and forks. :) I've been reading different recipes for cake, and I've decided I want to have real cake for the people at the party, and I'm going to make a dog food cake for the pups. :)

My medicines are working again! Yay! I feel better after I take them. The pain management dosages keep it all at a numbed down version of the pain. If I had a few days I'd hibernate from relief!

...My friend Hawk sent me a starbucks card this week, so Charlie and I got a coffee and puppichino on Sunday. It was so nice to sit outside with Charlie at my feet, a warm coffee in my hand and a gentle breeze blowing. The staff at my local Starbucks knows Charlie now, and are always supportive. Since he's still in training and a bit rambunctious, the only store he's stepped inside has been pet stores. We just go through the drive through, and then pick a spot outside to sit together.

At work today we found out by accident that our Big Boss has decided to tear down our cubicles and put us all in a row like a telemarketing call center. They're going to cover the windows and have us side by side. I'm losing half the cube space I have now. I hate that. My cube is the one place that is orderly and perfect. I can find you a file in under 30 seconds if you ask me for it. I decorate it once a month after I get off work, so it's always fresh and interesting to look at. I believe in the mission of my job, and I'm so passionate about it - but I'm discouraged. I spend all my energy at work, and have no social life, and then it feels like all these changes at work are just picking away at my spirit. If I have to take down my personal stuff it will be the last straw.

....I spoke with the Geneticist again, and he apologized. I'm glad I called because he forgot that he was supposed to be fighting with my insurance provider so I could find out what my final diagnosis is! This morning after doing some of my errands I stopped by the eye clinic and it turns out the reason my new glasses have been giving me so much trouble is because the frames aren't fitted correctly. So the uber cool frames have to go, and now I sit and wait again. I don't really care for the new frames - they're tortiseshell - but if they finally fit and I can see without a fishbowl effect, I'll be satisfied! The good news is that the eye doctor said my retinas look firmly attached, so I'm taking that as hope that it might not be Sticklers Syndrome after all.

Well, my darlings, my coffee break's over and I must go forth and stand on my head. ;) Take care until we gossip again!

Merry Christmas!

I got a new shirt from my husband! Now I know how BBC's Sherlock survived the Reichenbach fall...

He hopped in the Tardis with Doctor #11!

In other news, I saw the geneticist Christmas Eve morning. I'm really emotionally spent today. I can't really write about it at this moment, but let's just say it was a very weird experience to have a doctor spend hours with me and validate my pain and past.

I was diagnosed with Ehlers danlos syndrome by my rheumatologist, but my geneticist thinks I might have either hypermobile type or vascular type, or a complete other condition called "sticklers", which I haven't looked up yet. (I do have some info on it from him, but I was so tired after the visit and then I had to work and serve at Mass so I haven't read it yet.)

I need prayer from you, dear anonymous reader... So I can be tested because my insurance provider doesn't usually cover genetic testing for these conditions. Each test will run approximately 10 to 20 thousand dollars to run. But, if I have vascular type ehlers any of my organs could just decide to come apart without warning signs.... And if it's sticklers, I could have retina detachment and possibly end up blind. Obviously I'm praying selfishly to be spared those two outcomes and just have the lesser of three crosses to bear; hyper mobility type ehlers. In all things I'm reminded of our savior on the cross and of the little flower of Jesus, our dear Saint Therese... May all my sorrows, fears and all my pain be united to the Cross and let me bear pain so others may be spared or see the way to Christ. Amen and amen.

Tonight my Priest related a story of an excited 3yr old who led her uncle to the living room to gaze at a fine china Nativity set. She was asked by her uncle if she knew what it was, and she excitedly said "yes!!!!! It's breakable!"

    The fragility of the baby Jesus, who came to be completely broken for everyone...to be broken for me....it's very heavy on me tonight. I'm so accustomed to thinking of myself as fragile or broken, and I'm glad to be reminded by my Priest tonight to unite my brokenness to Jesus', and my sorrow over my barrenness to the sorrows of our Mother's heart. I am spared through my medical conditions ever having to lose a child, while she has sorrowed to see her child born to die for all of mankind. I can only marvel and pray and cry thinking about it all.

Merry Christmas, dear ones.