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.

heart of clay

I look for a broken heart on the beach. I nearly miss it, but here it is. I nearly miss it because it is so large. A clay heart, broken all the way through.

Here is a stealthie with my foot for scale.

Shoe selfie for scale, at the base of the broken clay heart.

Part of the cliff has recently collapsed. The heart must have broken during the slide. It will wash away in pieces now. Here is the cliff and you can see the scar of the slide. And the broken heart.

broken clay heart in the wall of the cliff, with the scar of a slide collapse

I tried walking the beach without oxygen. I did pick up rocks. I took a pulse oximeter with me. Carrying maybe three pounds of rocks, my oxygen saturations drop. Not well yet. 87 or below is not ok. It feels awful and exhausting too. Like being at a high altitude and not used to it. A pulse of 130 also does not feel great, normal being 70-100.

Pulse oximeter, with pulse 130 and oxygen saturation 87.

Thank goodness for the oxygen and the tanks that let me be mobile. Blessings and take care of your heart.

Songs to raise girls: Bessie the Drunkard’s own child

I am posting this from another site, originally posted November 2016. I am posting it because of a comment on a paper in my town about “homeless drug dealers”. It’s not the drug dealers that are homeless, it’s the addict. Ok, you can definitely have an addict dealer… But I worked hard to treat any kind of addiction, not only because of the patient, but also the family and especially the children. And every patient was a child once….

This is another temperance song that my mother taught me, learned from her father. Both of my mother’s grandfathers were Congregationalist Ministers in Iowa.

Out on the stormy night sadly I roam.
No one to love me, no dear pleasant home.
Dark is the night and the storm rages wild.
God pity Bessie, the drunkard’s own child.

Chorus:
Mother, O why did you leave me alone,
No one to love me, no dear pleasant home.
Dark is the night and the storm rages wild
God pity Bessie, the drunkard’s own child

We was so happy til father drinked rum.
Then all our trials and troubles begun.
Mother grew weary and wept every day.
Brother and I were too hungry to play.

Barefoot and hungry we wander all day
Looking for work, but “too small” they all say
On the damp ground to lay my head
Father’s a drunkard and Mother is dead.

Thus the two wandered, ’til one stormy night
Brother and sister both faded from sight
Then gazing at them, sadly I said
“Father’s a drunkard and Mother is dead.”

Cheerful, right? Again, I know the tune and only have the chorus memorized. My parents quit singing it in front of me so that I wouldn’t sing it at Show and Tell.

And small children shouldn’t hear this sort of thing, right? I don’t know. I learned an awful lot about the dark side of the world and danger from these songs. I found them helpful. I think they influenced me to be careful….

And think of the refugee children and children everywhere. This is still happening.

here: http://www.pdmusic.org/1800s/66fadamid.txt
and here: http://mudcat.org/thread.cfm?threadid=57166
The tune I learned is slightly different and darker than this: http://mudcat.org/@displaysong.cfm?SongID=6196
And some overlapping words with a different tune: https://www.youtube.com/watch?v=7ooDfYaH08E and https://www.youtube.com/watch?v=9KGiFkcxOus

The photograph is my maternal grandfather, F. Temple Burling, sitting on his grandfather’s lap. His grandfather was Morris Temple. My grandfather taught my mother this song and she taught me.

Dark

May gives me time to go dark. My mother died May 15, 2000, right by Mother’s Day. Her birthday is May 31, right by Memorial Day.

I wrote this poem when I was not sure I would survive this round of pneumonia. I would like to see grandchildren. So far so good. It got a little dark, though. Sometimes it does that.

When I sit down to write a poem, I don’t know where it is going. I sit down with a question. The poem is the answer. Sometimes the poem is where I want to be emotionally. Usually I am not there yet.

it is almost as if each poem were a prayer.

_________

Hello loneliness

Here I am again
give me a hug
it’s been a while

I’ve been so happy
I feel so loved

he has to go on a trip
to care for family

meanwhile
I am so sick
my heart hurts most of the time

it is tiring
it is tiresome

I may get better
or not

hello loneliness
hello illness
hello fraility
hello death

pull up a chair

and I’ll make tea

Yard Art

There is a fabulous garden in Portland, Oregon decorated with bowling balls.

i have decided to decorate with oxygen tanks.

if anyone has any oxygen paraphernalia, I want it, please.

This art installation is titled “Tethered”. Or possibly “Chained.”

Game ball

Warning: this post contains some time out words.

How do I process the game you played?

I am the subject of the game.

Or the victim.

Or no, I refuse. It is your game. I was not playing. I am the honey badger, metabolism so fast that I have to run from one meal to the next or else I will starve. I eat whatever I can find: cobras, bees, anything. I eat or I die.

You have tethered a honey badger to oxygen by playing a game.

I am the football and you have been kicking me, throwing me, catching me, slamming me to the ground as hard as you can in the end zone.

And now that I am worn and damaged and torn, you’ll toss me away, not even notice me, and find a new ball.

You will need a new football. To play with.

I don’t envy that person.

The truth is, it will be one of you. The group will rest on their laurels, oh, we nearly killed her, wasn’t it great? We showed her. She is so stupid, took her what, 21 years to fucking figure it out? And she thinks she’s so smart.

I was looking for food because I am always hungry. The food insecurity goes back to infancy. Maybe to the womb: my mother says she was not to gain weight and spent the entire pregnancy longing for a gigantic ice cream Sunday. Think of being in a womb, attacked by antibodies to tuberculosis, and starving all the time. Might be a little bit worried when birth happens. Fuck, I am going through a tunnel, what horrors await me here? But maybe there will be more food.

Maybe someone will love me. Maybe there will be someone for me to love. And feed. We can give each other food.

My advice to you is don’t be the ball. I was the ball for 21 years. I was so hungry the whole time, for food and for love, that I kind of noticed but dismissed it as unimportant. Food and love were more important. Work and my patients were more important. You don’t matter and your games are trivial.

It will be the weakest one who will be the ball. You worry that you are the one. You should worry. You had better look strong right away. Post some horror. Write something really tough. Don’t show anyone any niggling doubts. Um, the ball is wearing oxygen. I am feeling a little bad about this. Are you feeling bad about this? The ball isn’t just crazy, it’s hurt. Actually crazy is an illness too: I know that you discriminate and think that cancer is a legitimate illness and that mania isn’t, but you are assholes. No, you’re too small and pathetic to be an asshole. You are a one celled animal that is clinging to a hair on an asshole and you get shat on daily. And you know, deep deep in your tiny shrunken heart, that you deserve it.

I am so glad I am not you.

I am tethered to oxygen. But I am healing. I don’t think you can. You are locked in your small sick pathetic triangulation competition and pretending that it’s a game that it’s ok that you are just playing.

Ick.

Meanwhile, the oxygen is portable.

I have food and I have love and I have work to do that lifts me on wings. I will go too near the sun and light on fire and fall burning, but that’s ok. I’ve done it before. The ocean heals me, always. It is so much fun to fly!

This is in memory of my mother, my father and my sister. I miss all three and I love them and they love me. Today is the day my mother died. The longer we live, the more days are days when someone that we love died. But they are still here. They are in the rocks and the sky and the trees and the coffee cup. They are not in sugary donuts or foods that cause heart attacks. But they are all around us, cradle us, still love us. Joy to you and the memories of your loved ones who have gone on. Blessings.

broken two

I pick the rock up and drop it on another rock. Inside there is a vein of quartz. And what looks like a heart, made of quartz. Beautiful. I hope the rock does not mind being broken. I am questioning myself. The rock would break eventually but I have speeded that up. Sometimes we do some really questionable things out of curiosity.

The rock did not break along the seam that I expected it to. There is still that seam. Should I drop it again?

For the Ragtag Daily Prompt: workshop.