Tag Archives: photography

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Predicting medicine again: autoimmune disease

Once again here I go out on a limb. Here is my prediction for the next Really Big Thing in medicine, which is already happening. It is slowly rising from the murky swampy depths of our unconscious.

Here are clues: https://my.clevelandclinic.org/health/diseases/autoimmune-encephalitis

https://www.mayoclinic.org/diseases-conditions/autoimmune-encephalitis/symptoms-causes/syc-20576380

Autoimmune encephalitis? Or encephalopathy? What a mouthful. And what the hell?

Well, we have always said that we do not know the causes of depression, mania, schizophrenia, psychosis and all the other psychiatric diagnoses.

And now I think we know, though we don’t have them all sorted yet.

The cause is the immune system. And what’s more, it’s adaptive.

“NO!” (you run screaming from the room). “Not MY immune system! NO!”

Yes, I say, your immune system, my immune system, everybody’s immune system.

WHY? Well, my version shuts me down. I get tachycardia (a fast heart rate), short of breath, accusations that I am manic, my fast twitch muscles don’t work and I get pneumonia. And it lasts longer each time. Two months. Two months. Six months. A year and a half on oxygen and then off but really it took four years before my muscles started working right again. It shuts down my fast twitch muscles but not my slow twitch muscles.

So how is shutting me down adaptive?

Think. If there is a pandemic, or huge danger, or someone is trying to harm me, it isolates me. People think I am very very weird when it is happening. So I isolate, to protect myself. Isolate and voila — protection from pandemic. If I have resources, and luckily I do have resources, I can hole up. Food, drink and a broadband connection.

The book Brain on Fire and movie are about an encephalopathy: antibodies to NMDR that made the author psychotic until it was recognized and treated. I went to a virtual continuing medical education on encephalopathy in 2022, I think. In the US alone, there were already 555 patients identified with NMDR antibodies.

Now there is a whole list of antibody encephalopathies, many associated with cancers. Not all.

Here: https://autoimmune-encephalitis.org/wp-content/uploads/2022/10/PNK-The-Known-types-and-categories-of-AE-as-of-2022.pdf

I like the addendum “as of 2022”.

and here: https://www.nature.com/articles/s41572-025-00650-1

A physician friend calls me a few years ago. “Have you heard of NMDR antibody disorder?”

“Yes,” I say

“I have a patient with it,” she says. We are a county of 32,000 people. Rural. She is looking it up. I tell her what I know.

In January I see a patient who turns out to have Anti-Caspr2. I have to look it up. Now I see the list of encephalopathies that is rapidly becoming longer and longer.

I think that chronic fatigue, fibromyalgia and long Covid fall into immune system disorders too. Just because we haven’t figured out the mechanism: well, we may. If we don’t destroy the planet first.

I also have reservations about treatment. We are using more and more immune suppressants. I read about one that stops B cells from working. Specifically, the B cells that produce antibodies. Well, that would work for my disorder, except, I already get pneumonia really easily. And destroying the B cells lowers immunity and increases the risk of infection.

I see a patient in clinic who has a skin infection and a fever and an autoimmune disease. They are on an immunosurpressant that I don’t know much about. “Have you called your rheumatologist?”

“No, why?”

“I think you are supposed to stop the immunosupressant. Please call them today. And let me know what they say. Please!” I start antibiotics.

The patient sends a MyChart message. Yes, stop the immunosupressant while on antibiotics. In the future they will call the rheumatology office as well as seeing the clinic for any infection.

I am not saying we shouldn’t use immunosupressants. Sometimes we have to. Rheumatoid arthritis. Hypothyroidism, the most common autoimmune disease, yes, we should and do give outside thyroid hormone. But there is something else we need to do.

The clues for this lie with chronic fatigue and fibromyalgia. What triggers them? One in ten severe infections, severe stress, or a combination.

So we need to learn as a culture, as a world, as humanity, to lower stress. We can’t be high sympathetic nervous system fight or flight high achieving high spending higher faster crazier all the time.

Here is to the parasympathetic state. That is where we need to go. Go down, slow down, be kind to each other and ourselves, be gentle, laugh, fail, lie in a hammock, watch silly cat videos and fat bear week. Then the immune system might calm down and not attack us to save us. I think the immune system is pretty smart, really. Even as it pisses me off and limits me.

Go down, slow down.

Blessings and peace you.

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Unload 

I write Watching my sister die
a poem
14 years in the making

as usual
the poem goes off
in a direction I don't anticipate

I never know where my poems
will go

I just sit down
with something nagging at me

write me write me write me
NOW

and I've gotten up at 3 am
because the damn poem
won't let me sleep

that one was about
my future ex
a horse of course

Idaho Gigolo

my sister poem
takes me back
and deep 
until I cry

but the ending
is reconciliation
forgiveness
unexpected

that is why I cry

I don't expect reconciliation
from a damn poem
the poems do what they want
I never know 
what they will do

maybe they ARE alive

like a child
waiting for a fetus
waiting for the egg and sperm
to join

waiting to be born

wait

this poem is doing it too
damn it

but after the sister poem
I unload a huge burden
anger
and grief

and then to the facilities

and I unload there
too

so there

__________________

For the Ragtag Daily Prompt: waddle.

Do you think the seal rock is poopy? Do seals and sea lions waddle or is there another word?

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Watching my sister die 

I wrote this today thinking about my sister's write up "Watching my mother die" here: https://everything2.com/title/Watching+my+mother+die
Her write up is the fourth one down.

______________________________

Watching my sister die


I know before she does
but maybe not
maybe she knew
that last year

brave front
while soliciting money
on the internet
as the cancer progresses

she describes new treatments
I forget
how many rounds of chemo
she endured

eight years
from diagnosis 
to death

I stop visiting
for a year
after she bullies 30K more
from our father

and he calls me crying

I give myself permission
to change
to be a physician
more than a sister

because as a sister
my sister is 
cruel

she destroys my reputation
with my mother's family

or maybe they already
don't like me
because I think the family rules
are ludicrous and stupid

and I won't follow them

I suppose each generation
has someone who says
wait
these rules make no sense

why are we following these?

I think she will die
by February 2011
but there is another death
unexpected

the death of my hope
for a sister who loves me
for a sister who treats me well

for a sister who loves me

and I let that hope die
and I rise from the ashes
and I choose not to visit

and she uses this
tells people I won't visit
though I don't say I won't

people sent me checks

I sent them back
with thanks
saying

it is too soon 
to leave my nascent business

my sister
stays in touch 
this year

at last 
in February 2012
she calls me

my oncologist 
referred me to hospice
but I am not going

yes, I know
you are refusing to go

I don't saybut the cancer 
is progressing
and like it or not

you will go

my sister 
applies for a clinical trial
miles away

and at last
her enthralled circle 
refuses

they say
we are so tired
we cannot drive you there

daily

I fly down 
for a long weekend
and the hospice interview

I am excluded
but ask to step in
at the end

I ask the nurse
is this like where I live
that if there is a stroke

or a blood clot
or bleeding 
or whatever horror

hospice will keep 
her comfortable 

but will not treat it?

yes 

says the nurse

my sister stands
pushing away from the table
NO she says

I AM NOT READY

yes, I knew that

you are not going

I don't say
but you will go
willing or no

I fly down a second time
and as I leave
she cries

I am surprised

we have not talked
really

there are so many people
in and out
and I've been portrayed 
as a villian

there is still time

I fly down a third time

she is angry, angry
now in hospice
angry that she is dying

I start to sing a lullaby
and she says NO

I study her
I sing Samuel Hall

To the gallows I must go
I must go 
I must go

To the gallows I must go
with my friends all down below
saying Sam I told you so

damn their eyes
damn their eyes

saying Sam I told you so
damn their eyes

she smiles
a vicious secret smile

she is in renal failure
strange
says 

I have to take a trip

I say yes
you do

I don't know how

You will figure it out

How will I find you?

I am surprised again
the connection is still there
buried deep

You said I can take the dragon home
the one I made in college 
and gave you

You are born in the year of the dragon
you will have wings
find the dragon 

and you will find me

oh, good
she says 
relieved

she speaks of a bad pig

I say maybe it isn't bad
maybe it's done some bad things

she shakes her head

I say shall I take the 
bad pig away?

she still is not satisfied

I guess: do you want me
to keep the bad pig
from hurting anyone else

yes
she smiles
yes

again we are alone

I am Bad she says

You are not bad
I say
You have done some bad things

Very bad

She is crying

I say I love you anyway

and she blooms
like a rose
soft in a dark orange blanket
with matching lip gloss

forgiven
and reconciled

flying home
I name the dragon
Bad Pig

and gird myself
for death

three days later
she dies

and then the fallout
and the aftermath
begins

_____________________

I will attach this to the Ragtag Daily Prompt "escapade", though I think of escapades as fun.
The escapade is the photograph. She and I were dancing before my wedding, in 2007. 
I am the short one and clearly I was teasing her about something. 

Sorrow never dies, quite.

Neither does love.


by

Old woman 

In middle age
I acquire a new skill
along with invisibility
middle age women
are ignored 
by almost everyone

and I am gifted with power
to be invisible 
and to curse

I could already curse
aloud
but this is something more

a hand gesture
and a rhyme

fingle fangle
what a tangle
dingle dangle
it won't work

for all the Epstein players
and other men
who use 
mistreat
rape
abuse
imprison 
women

Viagra
has nothing
on me

and all the other
invisible 

middle aged

women

_____________________

The photograph is my grandmother, Katherine White Burling. I took this in 1979.

For the Ragtag Daily Prompt: cone. Just add an r in the word.
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Old man 

Old man
yes, we hear you
every niggling detail
it used to be about X
but now it's about Y
yells
about X 
and he doesn't like
the internet
where it has gone
at
the moment
in his car
it used to be
food, shelter
and a broadband connection
but now that doesn't 
seem to satisfy
as the tortured veins
repurposed as arteries
moved from the leg
to the heart
slowly close back down

the internet
is not the place
of glory and kindness and free exchange
of ideas
old man asks
hates to ask
for money
and in spite of evil internet
has a wishlist on Amazon
where he directs those
who do not care to donate
through apple pay
he is no longer allowed on
Go Fund Me

soon there will just be

cloud

________________________

For the Ragtag Daily Prompt: magnitude. 

The magnitude of trivia on the internet.

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Liar, liar

Liar, liar, pants on fire, nose is as long as a telephone wire.

Trigger warning: sexism, child abuse, dating, US culture. Kinda not tame.

The last guy I date, only we don’t date, is a liar.

It is a bit into Covid. He knows I’ve had three pneumonias and he texts. “Are you worried about this?”

“Heck, yeah. Of course.” Then I ask if we can talk on the phone.

We start doing distanced beach walks and talking. Talk, talk, talk. At first he has to lure me out.

“Want to go for a beach walk?”

“I dunno.”

“I made lunch.”

“Oh, then yes!”

He points out that I have food insecurity. He is annoyingly correct. By the end of any meal, I am checking to see if there is food for the next meal. It is automatic and dates to when I was a toddler.

We compared abusive childhoods. Really. Back to toddlers. He finally says, “You win.”

“What?” I am not trying to win.

“Your childhood was more abusive than mine.”

I think various unprintable words.

I start noticing lies. They are stupid lies, as far as I am concerned. They shut me up over time because there really is no reply except, “Uh, why are you lying? I am not believing any of that.”

He says he is really really smart. Ok, fine. He says he can read my mind. I do some attempt at a girlie modest shy face which probably more resembles a grimace. But he is deep in his dream lies and honestly, notices me less and less. When he says he can read my mind, I know he can’t, because he’d be horrified by the swearing and laughter.

He is the smartest one in the room, though, he says modestly, often people don’t realize it. I nod and keep looking for calcedony nodules, aka agates. He’s better at finding them than me. I am automatically competitive, but that’s on an upper level of my mind. At the deeper level I could care less.

I also do not care if he’s trying to impress me with his smarts. My feminist level laughs hysterically and thinks nasty nasty nasty thoughts. But I have a deeper level that can love most people. I keep that stuff hidden and I know he can’t read it. Though I can read him: not his mind, but my inner psychiatrist gets involved and wants to know, why does he lie? And he’s lying to himself, not me. I don’t believe a word, but I am interested. What is the goal, here? Why lie?

He had a perfect marriage. I can’t control my expression on THAT one. Uh, doesn’t exist, hon. Why THAT lie? It starts to sort out. Well, in a way it was perfect. Perfect for him. Not perfect for his wife. She was super super depressed. Guess none of that was his fault. Our absolutely sexist culture. And now I know why he is hanging out with me. I am depressed. But it is situational and temporary. I need to close my clinic and I still have a year on the lease. And I will go work temp doctoring, but it is risky. I may get pneumonia a fourth time and it could kill or disable me. So I cannot take the risk of closing early and paying off the lease as a temp. I have to work the year out and I am really down. He is looking for a depressed woman and I seem to fit the bill. And I am a doctor. Who better for a really smart male to control than a woman who is smart enough to become a doctor (but not as smart as him).

Well, it all blows up after a year. I close my clinic, go work as a temp, and keep walking in to rooms where patients have their masks off. It only takes me five week to get bad Covid, even though I am masked and even though I ask the clinic manager, the nurses, the medical assistants to have people keep their masks on. I am down and this time I need oxygen.

Pneumonia for me comes with tachycardia and the opposite of brain fog. The tachycardia makes me drop ten pounds in the first week and wires my brain like a rocket. I wake up in the morning anxious like that cartoon of the cat attached to the ceiling with all four paws and fur all on end.

He says, “Pneumonia makes your brain go faster.”

I say, “Nope.”

“No? What do you mean?”

I say, “My brain is the same speed as it always is. But when I have this, I can’t hide it.”

“I don’t like that idea at all.” Yeah, that is the moment when our relationship is done. By him, not me. For one thing, I am no longer depressed. For another, he is the smartest person in the room. But. My brain might be faster. He says, “I can follow what you say, but you don’t even take a breath when you switch from one topic to another and I can barely keep up.” Yeah, well, sorry. That’s why I bloody well hide it most of the time. Because our culture dislikes smart women A LOT. It’s okay, barely, for a woman to be a physician, but men don’t want to date them. They wouldn’t mind screwing them. My maternal uncle told my mother that he was looking for a wife, “But I don’t want a woman who is smarter than I am.” My mother snarled about my uncle for weeks. Go, mom.

So this guy was a liar. But maybe I was a liar too. I shut up once he started lying and I shut the gates and doors of the vast garden and jungle that is my mind. No entry to people lying to themselves. There is a public garden in my mind that they can visit, but the rest is closed, hidden, contains the entire ocean and the deep trench, and maybe the universe.

And I haven’t dated since. Because I can’t stand that the virginal disney princess girl mythos in our culture feeds the sexist child abusive Epstein and all the men with him. And bloody well don’t say, “But there are some men that aren’t like Epstein.” Yeah? Well then why aren’t they fighting the Epstein crowd to the death with guns and knives. Until all the men are protecting all the children, all the girls and all the boys, and the gay folk and lesbians and trans and different races and yeah, I expect you to model Kwan Yin and protect EVERYONE from being abused. Meanwhile, men can stay the heck away from me. And yes, you can substitute a lot of swears for the word heck.

For the Ragtag Daily Prompt: tame. I think this is not a tame subject.

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Show me 

I have been flying under the radar
for a long time
I want to be visible
on screen
maybe
I want to teach
Residents
Medical students


I want them to love rural medicine
as I love it
I am a pterodactyl
wanting to rise
among the AI satellites
and say
Use the telephone to reach other doctors
Listen to your patient
Listen to what they don't say
Listen to the pieces that don't fit
Let the patient teach you
Why are they really here?
It's not always a pill
Sometimes it is just
So that someone will listen
to the feelings
that our culture
denigrates
ignores
vilifies
hates
Listen
You might turn in to a pterodactyl too
Or a cross
between a modern AI manipulator
and a pterodactyl
It is good to have more tools
than a hammer
Let me show you mine
And you
show me yours

________________________

The Ragtag Daily Prompt is timid.

Argh, the formating is wrong. And WordPress has updated enough that I don’t know how to single space the parts I want single spaced! Feedback welcome!

Hmmm, used the poetry block as per Sgeoil — do I put it all in one block?

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Eating sunlight

Beloved
I don’t think I can bear this
It’s a good plan
To work five more years
And retire in better financial shape
House paid off
But it hurts so

My tattered bruised and battered heart
Already patched so many times
And to see so many people each day
Hurting

Why, Beloved?
Why don’t we mature?

Maybe I’ll be a tree again
Living wood
That bends and moves with the wind
That eats the sunlight
Drinks the rain
Endures the snow and drinks it as it melts
Until spring comes
And I stir and start to bud
Deciding when it’s time
To uncurl leaves in warm sun

_______________________

For the Ragtag Daily Prompt illusion. Or should it be delusion? Or survival? Or beyond that to peace?

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Scree dream

In September, I hike with the three friends in the Ragtag Daily Prompt photograph. I have not really backpacked into back country in years. The last time I carried the pack was in Italy with my daughter, a few years ago. She wanted to plan the trip as we went and stay in hostels. We did.

We hike in the first day, up switchbacks from the parking lot at about 3200 feet, to a pass at 5400 feet, over and down to a campsite. The sites for cooking are separate from the sleeping sites and there are serious big metal bear boxes. We are to put everything in them, including the deet and toothpaste and anything that could possibly interest a bear.

We pack day packs the second day and climb back up to the pass. We peel off there to the trail to Sahalie Glacier. After being on oxygen at sea level for a year and a half, I am beyond delighted that I can actually do this. We go up and up and the trail gets worse and worse, until it is rather nasty scree. Two other people coming down say it is even worse, slippery, unstable, if we go on.

So, like sensible people, we stop for lunch. The slope is very steep and we each find a place to perch. Lunch tastes good. Then the other three want to go on. I don’t. I want a nap. They go on, I find a slab and the view from it is the photograph: down, down, down to the lake far below.

They will get me on the way back down.

And I do go to sleep. It’s all that night time call I’ve taken over years and years. I can sleep practically anywhere, including in a noisy casino in the past. I tuck up against the rock and the sun is almost warm.

I wake up. Two other people have come by. My inner clock thinks my people should have come by. Do I wait? Do I stay? There are more ominous clouds building up and this will be much more slick and dangerous if it starts raining. And we are exposed, for lightening.

Then I see a hat, on a curve of trail below me, moving. I swear it’s one of my party. But how did they go by without seeing me or waking me. THEY ARE DITCHING ME ON THE MOUNTAIN. No, that is ridiculous. Hmm. She is not with either of the guys. I debate for a minute, shout and then grab my things and head down.

I catch her. Once they left me, there really was not a clear trail. There were multiple sort of trails. And it was tricky. They separated a bit. She lost track of the other two and then picked the least difficult way down, which seemed to be a trail. It was NOT the trail that went by me, but she didn’t know that.

We found one of the guys below us, waiting. The last came down a bit later. None of them had come on the “right” trail by me. We headed down and stopped to put on rain gear. It rained lots! We were also above the tree line, but also I would say that we were above the marmot line. We saw eight hoary marmots marmoting around on our way down. They did not seem deterred by rain at all.

So that is how I was left in the scree to dream. I would have returned by the time it started raining anyhow, and the trail was good once we got past the scree. Not all the way to the lake in the photograph, the trail ran along a ridge that is not in the picture and wound down near the lake.

For the Ragtag Daily Prompt: scree.

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Balancing act

I am working at a site in the greater Seattle area, but I am not going to say where. Why? Two reasons. One is that the patient diversity is huge: the organization is organized to take care of low income, uninsured and immigrant patients. The second is that I am still trying to decide if the balance of the organization is working. It may be working but it might not be working for me.

I am at a large clinic, with primary care, dental, behavioral health, a nutritionist, a pharmacy and three in person translators. In any one day I will probably use translators for at least six languages. English, Spanish, Dari, Hindi, Punjabi, Arabic, French, Somali and sometimes languages that I have to look up the country because I don’t know where that language is spoken. The work is fast and furious.

The overall no show rate is 20%. This makes the day very unpredictable. It can be very very fast and busy with everyone showing up and then later there are three no shows in a row. I think that the no show rate has been less than 20% but on Tuesday it was more. However, everyone showed up in the morning and there was a hospital follow up that should have had 40 minutes and only had 20 and of course then we ran later. My lunch theoretically starts at 12 but I went to lunch at 12:50 and came back 6 minutes late, at 1:06. Then people no showed while I worked to finish off everything from the morning. It did feel a bit nuts.

We are using the electronic medical record EPIC. I find EPIC epically frustrating. It is “feature rich” which means it has too many ways to do things. If I ask someone how to record a phone call to a patient, it takes eight steps. A week later I have to do it again, I ask again, and the next person shows me a DIFFERENT set of eight steps. And there have to be at least eight ways to do anything, so it is very confusing. Also, the “home” page can be personalized to the extent that people look at my version (I have not personalized it much) and say, “Mine looks different. I don’t know how to do that on yours.”

Whew. So, how to cope with the fast furious unpredictable schedule? I am “precharting”. For this Tuesday, I spent 70 minutes going through the patient charts on Saturday. Then I may know why they are coming in, if they had a heart attack two weeks ago and are following up, if it is a well child check and the last one was two years ago, if there are outstanding issues like a elevated liver tests or they have not been in for their out of control diabetes for a year. Then, of course, some of them do not show up. It is so busy that all I feel when someone no shows is some relief, like a ray of sunlight in a dark forest. Ok, the person who was horribly sick and in the hospital for a week and had surgery, they really do need to follow up. But I cannot make them, no one can.

We have live translators, outside translators who come with the patient, family sometimes translates and two phone translation systems. Our live translators cover the following. One Spanish only, one Dari, Arabic and ?maybe Russian. A third language. The third does Hindi, Punjabi and something else. I can’t tell by language who is a recent immigrant or refugee or who is a citizen of the United States for thirty years.

The clinic system has high standards for care of an often vulnerable population. However, I have not decided if it falls into a statement by my grandfather: “The higher the ideals of an organization, the worse its’ human relations.” My job in Alamosa had very high ideals, but I was fifth senior doctor out of 15 in a mere two years. A burnout job. This one has three new doctors coming in soon. My training and assistance to learn EPIC has been sparse and not up to my standards. If the new doctors are treated the same way then this is a burnout job as well. This is a place that I could work in intermittently alternating with other places in the country, but only if it is balanced for both the patients and the physicians. The jury is still out, but there are many red flags. It is a six month job and I am two months in, so we shall see.

Hugs to everyone.

_____________________________

For the Ragtag Daily Prompt: nuts.

The photograph is from Larrabee State Park this weekend. My daughter came out and saw many of her friends, stayed with me, and we camped for one night at Larrabee.