No pandas

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

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.

Covid-19: Emotional weather

I do not think of emotions as bad or good. None of them are bad or good. They are information, controlled by electrical impulses and hormones, evolved over millions of years (or endowed by our creator, for those who swing that way).

I don’t dismiss emotions. I listen to them.

I think of myself as an ocean. There is all sorts of stuff happening in the depths that I don’t understand. Probiotics, for example. I don’t take them. If not for penicillin, I’d be dead many times over, from strep A pneumonia twice and other infections. I don’t think we understand probiotics yet. We don’t understand the brain, either.

The emotions are the weather in my life. I don’t really control them but they don’t control my ocean, either. Some days are sunny and gorgeous and then a storm may blow up. I am afraid of hurricanes, one destroyed my grandparents’ house in North Carolina, on the outer banks. I think all the cousins still mourn that house. And I miss my grandparents too, all of them. And my parents and my one sister.

See? The weather got “bad” there for a moment, but it isn’t bad. Storms have their own beauty though we hope to batten the hatches and that not too much damage is done. Maybe there is rain, scattered showers, sun breaks, a lenticular cloud. In the Pacific Northwest on the coast, the weather can change very quickly and we have microclimates. My father lived 17 miles away, but inland from me and in a valley. It was warmer in the summer and colder in the winter.

My goal with my weather emotions is to pay attention to them, let the storms blow in and out, and try not to harm anyone else because of my weather. When my sister was in hospice, we had a sign up in my small clinic. It said that my sister was in hospice with cancer and that clinic would be cancelled at some point with little warning. Patients were kind and gentle with me. And then it was cancelled, when she died. I got cards from people. They were so kind, thank you, thank you, and I could barely take it in. My maternal family then dealt with grief by having lawsuits. I don’t think that is a good way to deal with grief, but we just see things differently. Maybe it’s the right way for them. I don’t know.

Whenever I was having internal emotional weather that stirred me up, I would tell my nurse or office manager. Because they will sense my weather and need to know what is up. I had enormous support from them during a divorce, while my partners treated me horribly. My nurses and office manager knew me and my partners didn’t. My partners distanced me as if a divorce were catching. Whatever. Their loss.

Sometimes patients sensed that I was upset. I could tell by their faces. If they didn’t ask, I would. Bring the emotions out. Reassure them that I AM grumpy but not at them. Stuff in my own life. No worries.

Sometimes clinic is about a patient’s weather. They ask if they can tell me something. Often it is prefaced by “Maybe I need an antidepressant.” or “I feel really bad.” When they tell the story, usually I would say, “I think it is perfectly reasonable and normal that you feel angry/hurt/shocked/horrified/grieved/upset.” And then I would ask about an antidepressant or a counselor and most of the time, the person would say, “Well, I don’t think I need it right now.” What they needed was to know that their weather was NORMAL and REASONABLE.

I am seeing things on Facebutt and on media saying that mental health problems and behavioral health problems are on the rise. Maybe we should reframe that. Maybe we could say, “The weather is really bad right now for everyone and it’s very frightening and it is NORMAL and REASONABLE to feel frightened/appalled/angry/in denial/horrified/confused/agitated/anxious or WHATEVER you feel.” This weather is unprecedented in my lifetime, but as a physician who had very bad influenza pneumonia in 2003 and then read about the 1918-19 influenza, I have been expecting this. Expecting a pandemic. Expecting bad weather. This will pass eventually, we will learn to cope, be gentle with yourself and be gentle with others. Everyone is frightened, grieving, angry, in denial or in acceptance. The stages of grief are normal.

Hugs and prayers for all of us to endure this rough weather and help each other and ourselves..

I took the photograph in color. My program made a black and white version. It looks like the back of a stegosaurus to me, a dinosaur now living as a mountain.

For the Ragtag Daily Prompt: rainbow. Because sometimes the rain and sun combine to make a rainbow.

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

Makeup

Poem: Makeup

For a fellow blogger and for the Ragtag Daily Prompt: Still. I am thinking of both stillness and of still photography. A photograph. For a still, I think that it is usually posed. I like taking portraits when people are not posed.

Advice to Michael

This poem is about a dream that helped me after my mother died and through a divorce. It was not an easy process, to look at my childhood and what happened. It can be a very frightening place to go. Good luck and health to everyone who tries.

Painting angels

You were an artist
You are an artist
You said that you’d have to live to 120 to finish all your projects
And died at 61
I keep wondering
what the art supplies are like
and if you work on sunsets
or mountains
or lakes

Trey, 9
made a clay fish last summer that I admire
He said grumpily “It’s too bad Grandma Helen died before I could do clay with her.”
He tells me he’s ready to make raku pots to fire in your ashes as you wished
I ask what he’d make
He considers and says, “What was Grandma Helen’s favorite food?”
I can’t think and say that she liked lots of foods
At the same time wondering squeamishly if maybe
he should make a vase and then being surprised
that I am squeamish and thinking of blood and wine,
too, I wonder if my dad would know. “Maybe guacamole.”
I need to find a potter to apprentice him to.

Camille, 4.
asks how old Grandma Helen was when she died.
I explain that she died at 61 but her mother died at 92.
Camille asks how old I am.
40.
When are you going to die?
I say I don’t know, none of us do, but I hope it’s more towards 90.

Camille studies me and is satisfied for now.
She goes off.
I think of you.

I perpetuate
the Christmas cards you did with us
upon my children.
They each draw a card.
We photocopy them and hand paint with watercolors.
Camille wants to draw an angel
and says she can’t.
I draw a simple angel
and have her trace it.
She has your fierce concentration
bent over tracing through the thick paper
She wants it right.
The angel is transformed.

My kids resist the painting after a few cards as I did too.
Each time I paint the angel
to send to someone I love
I think of Camille
and you
and genes
and Heaven
I see you everywhere


January 19, 2002

published in Mama Stew: An Anthology: Reflections and Observations on Mothering, edited by Elisabeth Rotchford Haight and Sylvia Platt c. 2002

For the RDP: another day.

people being people

There is a fascinating essay on an obscure unethical website, titled Online Community Dynamics. I keep thinking about it. It inspires today’s poem.

people being people

people being people
they are often scared
huddle
in groups
it’s safest if a leader
identifies an enemy
so that everyone can come together
in hate

the leader
tells the group
who to hate
and why
whether it is true or not

I started out writing
under the title
mean stupid people

but that isn’t right
and anyhow I’d rather find a way
to forgive
again
and again
and again

so I started again
with the title
people being people

maybe we will mature as a species
some day

who do you hate?

now look in the mirror
and ask

who have you forgiven
today?