Category Archives: angels

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No pandas

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

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PANDAS PHYSICIANS NETWORK: PANS/PANDAS AWARENESS DAY

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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.

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where you can’t find me

Poem: where you can’t find me

It is easy with you
All the places you’ve been offended
Where you haven’t been treated right
A bike shop
Food co-op
Coffee shops
Restaurants

It’s easy to hide my physical body
Where you can’t find me

But what of my mind and heart

You always feel it when I go

I go to the Beloved
I give up
I cast myself into the abyss
Grief, denial, loss, bargaining, abandonment, hopeless grief
I throw myself over the cliff
Over and over
I resist
And then let go

It’s not wings
Because the cliff is a waterfall
I don’t want wings
And the Beloved laughs

Wings form
I refuse to fly
I won’t I won’t I won’t
I fall towards the water

Each time I wonder
If this time the Beloved will not shift
I hit the water

Safe again
Scales and tail
And I can breathe

And swim free
To the sea

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Sea of Love

Poem: Sea of Love

I go in the sea
of dreams
open the chest
the trunk
the saddlebags
Empty the dirty laundry
Of emotion
On the floor
Grief and joy
Fear and hope
Mine
All mine

There is a place
Beyond words
I see you in that place
It is very old
And very young
It is so frightening to go there
Lose words
The first time
It is haunted and hunted


Are you aware
Of that place
Do you go there
Of your own volition?
Or do you struggle
Fight and suffer in the
Choppy boundary between air and water
Fear drowning
Water surrounds you
Above you too
You are in the wordless place
Over your head
Are you too deep?

Open your eyes
In the green water light
A mermaid waits to lead you
To a rope to a raft
And me

But first you must open your eyes

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vast

Sometimes emotions are vast. I do not think our culture deals with grief very easily. Grief then becomes a vast pit, stuffed inside us. I sent the Falling Angels poems to friends and family. One older friend said that the poems were too sad and was I that sad all the time?

I replied, no, I am not sad all the time. The sadness is in the poems because there are very few people that I know that are comfortable with sadness and grief. So I put it in to poetry, because I do not want to stuff it. We need to let grief come out and let the tears flow and let it go.

For the Ragtag Daily Prompt: vast.