harbor

sometimes when
we are alone together
and just talking
wandering from topic to topic

and you say I always disagree
and I say …(I don’t say no I don’t)
and I say I like to think about things
from all sides

and you listen some too

sometimes when
we are alone together
and just talking

it is as if we have reached a harbor
and feel at home

No pandas

Today is PANS/PANDAS awareness day. I wrote this a couple weeks ago.

PANDAS PHYSICIANS NETWORK: PANS/PANDAS AWARENESS DAY

___________________________________

No pandas

I don’t have PANDAS because in the United States we barely believe in it in children and we don’t at all in adults.

I don’t have PANDAS because even though one psychiatrist said I did, he retired, and the next one says I don’t. Then not sure then no. They don’t agree.

I don’t have PANDAS because my primary care doctor won’t read the guidelines even after I have been her patient for seven years.

I don’t have PANDAS because my pulmonologist has never heard of it.

I don’t have PANDAS because it would be a lot easier to put me on a mood stabilizer to shut me up than listen to me.

I don’t have PANDAS because I am labelled difficult because I am afraid to take a mood stabilizer because I do not get a fever or a white count so my main symptom of infection is that other doctors think that I am manic though I am hypoxic and short of breath. They want to fix my mood while I want to not die of pneumonia, so our goals are at odds.

I don’t have PANDAS because I am a doctor and if I had PANDAS my fellow local doctors would feel guilty that they have told each other that I am bipolar and manic for the last 18 years and have shunned me at the county medical meetings and won’t even send me the invitations, except for the one that forwards them. He says he has given them my email and he doesn’t understand why they don’t send me the invitations.

I don’t have PANDAS because Seattle Children’s doesn’t allow the Cunningham Panel to be drawn and they say there is not enough evidence yet.

I don’t have PANDAS because I can’t afford to pay $925 on my own for the Cunningham Panel and anyhow my antibody level is back to whatever is my new baseline, higher than before no doubt.

I don’t have PANDAS because the other doctors are frightened: if I have PANDAS then who else does and if I have chronic fatigue caused by hypoxia and fibromyalgia and it’s related to PANDAS then who else would they have to test and neuropsychiatric is a whole different thing from psychiatric and we swear that we don’t know what causes chronic fatigue and fibromyalgia.

I don’t have PANDAS because I am an adult who lives in the US though if I was in Canada or Europe I could in fact have PANDAS.

I don’t have PANDAS because in the United States we barely believe in it in children and we don’t at all in adults.

trilogy

The Lady Ox trilogy

The first poem in this trilogy was written in 1984. The next two were written twenty years later. Like ouroboros, the snake eating its own tail.

The first poem popped into my head while I was thinking about flowers. The second two were both problem poems. Most of my poems are problem poems: I sit down with a problem that I am working on and start writing about it. I do not know where the poem is going to go and I am always surprised. And it often goes somewhere that I don’t expect. Often it is a map for where I aspire to go emotionally, but usually I am not there yet when I finish the poem.

molting

I am growing
My shell hurts
It hurts it hurts!
I cannot shed it
I try and try and try
I fight
I seek allies and help
I fight
One year, two years, nearly three

I’m free
My shell suddenly releases and slides off
I can feel my soft body expand
To my real size
Bigger
Joy!

Oh!
They’re attacking!
Why why!
My brothers! My sisters!
No!
Your claws hurt!
They are cutting me
Ow ow stop why!

I run
Scuttle sideways
Soft and clumsy
Hide
In the mud

Why why?
Oh, my wounds ache
Stabbed
By multiple claws
Deepest pain
In my heart
At this betrayal.

I hide
I sit
I think

It was so hard
To shed my shell
Why would they attack?

Oh!
Their shells hurt too!
Their words
They were grabbing me
To try to see how I’d shed my shell
They were desperate
Oh they must be in such pain!

Can I forgive them?
Do they know not what they do?

I hide
I sit
I think
I heal

My shell is strong now
I am bigger

I will go forth
And see who is trying to shed their shell
I will try to protect the newly molted.