I’ll Be at My Funeral

For the first night in ages I am home at midnight alone. Before I was with Jax I spent a number of years single so it’s not a shock or anything, but I’m finding my inability to escape these thoughts of pain unbearable. Normally I paint or write or do almost anything to steer myself away from it-to keep my mind from going there.

My knuckles have a sharp ache from RA. My shoulders have a constant nag from my recent bizarre sleeping habits. I’ve been caught numerous times this month asleep while half in and out of bed sitting fully upright. Also, I’ve been found with my legs straight in the air. I’ve been crouching, kneeling, contorting every which way to escape the impending doom of RA tearing through my joints.

I don’t mind the needle injections of enbrel. It is my only hope at this point to be able to do my type of work. My mom recently told my aunt that I would probably be dead if it weren’t for my passion to work. I have a deep need to be here on this earth.

I’m proud of Jax that he could go away tonight and not worry so much that he stayed home. He needs his own life. Plus, it’s a bonus for me to get his kisses and attention when he’s home. I admit that my work often forces me to ignore that he’s here for several hours each evening.

But I can’t help craving the one thing I can’t have with him right now – sex. We make up for it in many ways with adventures and sundays off from the world, but he still fears I am too fragile, to breakable for that. Now that so much time has passed it’s actually grown into another beast all together. I have chilled out about it and I do know it will all come back together…but I’m impatient and curious as hell and want to know when. Will he ever be able to push me against a doorway again?

Will I ever be able to go without pain meds for a full day? For half a day? (For my pancreatitis not the RA). No one has any idea how long I can keep these demons from chasing me. I long can I hold them off of me? Will I let a moment of humaness get me again and put me right back into the hospital? Haven’t I done my time?

At least my friends and colleagues are past the phase of trying to force me to see their doctors or to see this or that quack. Do they think I’m a lost cause? Or… The reality is that I probably refuse to allow myself to complain about it enough for them to understand the severity of it all. They just see me limp and watch my expressions carefully, afraid I’ll bite their heads off if they bring it up.

I’d love to be able to go to my own funeral. How much did I really hide from them all?
–love, Sasha xoxo