An Empty Shell of Me

I am a melancholy, drifting mermaid, bedded in soft seaweed, whose head has inexplicably been invaded by the Russian navy on one side.
The other half… dead.

My Body’s Betrayal – a prose poem

“I have no idea what I’m talking about / I am trapped in this body and can’t get out”  — Thom Yorke An empty husk, sunk into a permanent hollow in the flannel sheet and mattress A mattress that used to be his mother’s Everything here used to belong to someone else, myself included. Perhaps not…

Upon The Loss Of Another Doctor

This job, the simple job of pretending we feel all right while hugging our spouses and kissing the tops of our children’s heads; of negotiating new doctors and treatment plans and insurance coverage and basically having to BEG for the basic care we deserve while burned-out advocates, as they occasionally must, slip away to their…

Another Little Piece of My Heart

I am going to have to take a break from blogging. It does nothing but get me in trouble, making things unbearable for me at work, punishing those close to me. I say again to the person who turned me in to my supervisor last year: FUCK YOU. And I will say the same to…

I love my dog

I am having a hard time accepting that I needed to give in today. I am doing better this week, which means “failures” are harder to accept emotionally. Besides having one nearly pain-free day and then easy-to-treat headaches the following two days, I’ve been TRYING. Keeping track of symptoms, medications, special circumstances. Taking less medicine…

~ thank you

I am amazed to have followers, in one day. Survivors whose blogs, chronicles of pain and triumph, I had already noticed and admired. The thoughtful comments on what initially felt like a frivolous post (changing the lyrics of a well-known song) show so much caring and community, understanding and acceptance of what is a tremendously…

With Most Respectful Thanks To Sir Elton John

It has been almost a year since I last posted. During that time, I quit my job (see last entry, although there were other reasons too); started eating wheat again and eventually became much sicker; John resigned from his teaching job. We pulled our retirements. We thought we were going to move to California, and…