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.

pigs and fishes

is it ok

if I don’t make sense for a little while?

this is hard

it’s really hard
sometimes
to communicate

I never did
join the mainstream
of medicine

I went to class
to medical school
and wondered
and noticed
that the classes resembled
descriptions of cults
how they train people

and I thought
I am not joining any cult

and I kept my mouth shut

in the elevator
when another student says
“The other day
I threw out all of my husband’s plaid shirts.
I hate them.
They are too low class.”
If he loves them, you’ve hurt him, right?
and I think
I could say
“Yes, I hate it
when my husband
wears my plaid skirt
he stretches them all out
and ruins them.”
I would be outed
even more than I already am
as weird.

I don’t say a word
I just think
words

Medical school is four years
Residency is three
I am quiet there too
impression that I am shy
which is a lie
even so, the faculty fear me

I hear, 25 years later

and I am surprised

5 foot four
130 pounds

what the hell is there to fear?

though a boyfriend says
“You turn into an ogre
when you are angry.”

but I am quiet
in medical school
in residency
except when a patient
needs me
to speak

morph to ogre
morph to werewolf
if needed

as I get older
slowly
slowly
I learn
more subtelty

mostly from my children
who are subtle
and very very smart

at any rate

I never bought in to
the give opioids to everyone

and eventually
it turns out
that my intuition
or instinct
or whatever the hell you want to call it
study of addiction from the experience
and reading in college
matches
the studies
that come out

now I have another one
an intuition

the data is catching up with me

it’s funny
in my small community

I feel so lonely
after 21 years
mother’s death, sister’s death, father’s death
divorce
single mother 2 children
niece don’t go there
I am labeled by the medical community
I hear that the senior doctor
in the community
tells a woman midlevel
at a party
that I am crazy

maybe so

but I was right about opioids

pigs and fishes

is it ok

if I don’t make sense for a little while?

maybe
just maybe

they could listen to me this time

but I don’t think

they
will

that would be ok
but it is hurting people
and I can’t bear that

so I put myself
back in the traces

once in a massage
I thought
I can’t bear this
I am not strong enough
and suddenly I was in a dream world
where my back was enormous
huge
unending
and I thought, oh, I can bear this
thank you
I think

I put myself back in the traces
I am an ox
I plant my hooves

I begin
to pull
hard

pigs and fishes

even as I cry

The photograph is from 2014. Two pairs of glasses frames ago….

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.

Oxygen testing

“If oxygen might help with chronic fatigue, as it has helped you,” a friend asks, “how do I get on oxygen?”

Complicated answer.

First of all, one of the things that is not clear, is what recovery looks like. I think I’ve had low grade chronic fatigue for the last 7 years compared to my “normal”. Now, will I get off oxygen? I don’t know. I am hoping for September but it may be that 7 years of low grade hypoxia means I have lung damage and no, I won’t get totally off oxygen.

They have apparently recently made the guidelines for oxygen more stringent. I sort of missed that update, even though I just recertified in Advanced Cardiac Life Support. You now have to have an oxygen saturation that goes to 87% or below. It used to be 88.

Now, you can test this at home with a pulse oximeter. In 2005 after the influenza, I held my saturations but my heart rate would go up to 135. Which means that I walked across the room very very slowly because a heart rate of 135 sustained does not feel good at all. Normal is 70-100 beats per minute. You can measure pulse with just a second hand, number of beats in a minute. For oxygen saturation, you need the pulse ox and it will measure both heart rate and oxygen saturation.

So: measure pulse and saturation at rest first. Write them down.
Then walk. I usually send patients up and down the hall three times then sit them down and watch the pulse ox. In some, the heart rate jumps up. If it’s over 100 and they are getting over pneumonia, I don’t want them back at work until it is staying under 100. Or if sitting they are at a pulse of 60 and then walking it’s 95, well, I think that person needs to convalesce for a while yet. They can test at home.

As the heart rate returns to the baseline, the oxygen level will often start to drop. Does it drop to 87? Describe the test to the doctor and make sure the respiratory technician does it that way and also they should do pulmonary function tests. Mine were not normal.

Now, what if the oxygen doesn’t drop to 87? We are not done yet. What does the person do for work or do they have a toddler? If they have a toddler do the same test carrying the toddler: they sit down, exhausted and grey and this time the oxygen level drops below 87. If they do not have a toddler, do the test with two bags of groceries. Or four bricks.

When I did the formal test, the respiratory therapist said, “Let’s have you put your things down so you don’t have to carry so much.”

“I’d rather not.” I said, “I want to be able to walk on the beach, so I need the two small oxygen tanks, my bird book, camera, binoculars and something to eat.”

“Oh, ok,” she said.

So I did the test with two full tanks of oxygen, small ones, and my bird book and etc. I dropped like a rock loaded. I think I would have dropped not loaded but perhaps not as definitively. Still hurts to carry anything, even one tank of oxygen.

We are making a mistake medically when we test people without having them carry the groceries, the toddler, the oxygen tank. My father’s concentrator is pre 2013. It weighs nearly 30 pounds. Now they make ones that weight 5 pounds. Huge massive difference.

Good luck.

Fierce woman

Ok, who is this fierce woman?

It is not me.

It is not my daughter.

It is a relative.

It is not my mother.

It is not my grandmother.

I have pictures of all of these women with that expression.

This is Mary Robbins White, my grandmother’s mother.

This is the line of women: mother to daughter all the way down.

What is passed from mother to daughter and mother to son? Besides the fierce expression?

Mitochondria. The mitochondria are only in the egg, not in the sperm. My grandparents, had three children, two boys and my mother. My mother passed the mitochondria to me and my sister, but the men would not contribute mitochondria to their sons or daughters. It is amazing to look at that serious face with intensity and concentration and see that passed down to my daughter, my son and my niece….

Guess who is who in the following photographs. I took two of them.

get real girl

While I organize, I find things. Most of the barbies apparently got blown up with firecrackers one time when I was not home. Both of my children were involved with this. “Not the babies,” says my daughter. “Also not the Get Real Girl, since she is yours.”

Well, the Get Real Girl is the camping one, with backpack, GPS, camping stove, frying pan and fried eggs. Apparently she is not a vegan. She acquired the diving equipment from a barbie set and was all ready to go in the water (no wet suit though) when one of the barbie babies landed in her lap. Gosh, now what! As you can see, they seem to be bonding even though Get Real is not going diving today. I will have to see if there is another Action Figure around the house that could hold the baby while Get Real dives….

We had another Get Real Girl, one who plays basketball. I have found a lower leg and foot. I suspect that she met her fate with the barbies, poor thing. Maybe my kids will give me another Get Real Girl for Christmas…..

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 three

I drop the fragment of rock with the seam a second time. Now I have three pieces. I stop there. When I climb back up the bank, I have an oxygen tank, a camera and rocks. It involves quite a bit of swearing and stopping to rest while I try to get enough oxygen.

Hopefully I will get better. I don’t know when or even if. My friend B says he wants to know what the pneumonia was, that triggered this round of pseudoautoimmune misery. I shrug. “We know some things it isn’t.” I say. “It isn’t covid-19, it isn’t influenza A or B, it isn’t respiratory syncytial virus, it probably is not strep A though I still haven’t had the second blood test. It isn’t pneumococcal pneumonia. It could have been mycoplasma pneumonia or pertussis or a very long list of viruses. Doctors are practical scientists, at least, I am. If the patient is getting better, don’t chase an answer that won’t add anything. I caught something, probably in the clinics where people kept taking off their masks when they were ‘alone’ in the room. They didn’t realize that they were breathing out viruses or bacteria that could take me out.” We aren’t exactly sure if the combined penicillin and clindamycin, high dose, helped or not. I think it did, but stress makes this worse too and it was a very very stressful time. Mean people, you know, and mean family. I just don’t understand what they are thinking.

I really think that post covid-19, we should wear a mask if we go out in public when we are sick. Because you don’t know which people are the vulnerable ones. I normally have lots of energy and I don’t think people would guess that I have had chronic fatigue and that I am terribly vulnerable to infection. In the clinic I owned, after I was sick in 2014, I asked any patient who was sniffling or coughing to wear a mask. “I get pneumonia easily,” I would explain. They had the right to refuse and then I would not see them. After I closed my clinic and went to work as a temp doc, I could not protect myself. I asked the nurses to ask people to PLEASE keep their masks on, but people are people. They didn’t. I had a bit of a PTSD reaction every time I walked into a patient room and they had masks off. I wanted to run out of the room screaming but I was more restrained and just said, “Please, please, PLEASE put your mask back on, other people have been in the room.” I didn’t add “And you might kill me.” because I only had 20 minutes for the visit…..

The pieces of rock are beautiful, aren’t they?

Here is a great song. Got it from this blog: https://reflectionsofanuntidymind.blog/2021/05/07/icky/

This is all for the Ragtag Daily Prompt: workshop. I like working with rocks. I have to decide what work to do next, since it’s no longer safe for me to do family medicine. It SUCKS. I really miss my peeps.

I have to get well first. If I do, what next?

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.

broken 1

I was playing along a stream on Tuesday. It was darn hard to climb down to with my oxygen tank and camera. It made me very short of breath. But I love water and running water is joyous.

I was picking up rocks and looking at rocks. This rock really interested me. Look at all the cracks. When the river is higher it would wear the rock down. In the winter the cracks might freeze. I thought this rock might be ready to break. What is inside?

This is for the Ragtag Daily Prompt: workshop.