Tag Archives: Beloved

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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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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.

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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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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.

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Fuzzy Poet Doctor and the small child

I think I finally understand what I have been doing in clinic all these years. And not just in clinic. As a theory it explains both why patients, nurses, hospital staff and specialists really really like me and my fellow Family Practice doctors, particularly the males, and the administrators, really really do NOT like me.

I am on a plane flying to Michigan a few weeks ago. Double masked. N95 with another mask over it. Sigh.

A friend keeps saying that he can see into me. He can, but he can see thoughts. Not feelings. I am wondering if I see feelings. But I see the stuffed feelings particularly, the ones that people keep hidden. They are like clouds.

And then I think, oh.

I automatically scan any new person for their small child. The inner small child, who is often damaged and hidden. The small child is hidden under those stuffed feelings, which I think of as monsters. In Ride Forth, I am writing about pulling every monster feeling that I can find stuffed out and letting myself feel them. And that people do not like seeing me like that. Their monsters attack me!

Except that the monsters don’t attack. The monsters come to me and say, “Please, please, help me. I want out. The small child needs to heal.” The monsters lie their monstrous heads in my lap and weep.

Now WHY would I develop this skill? That is weird.

I develop it because my parents both drink. The myth in the family is that it was my father. But my mother’s diaries and also her stories make it clear that she drank heavily too. I think they were both alcoholics. And she told two stories about me trying to get someone to get out of bed to give me food as a toddler. As jokes. But it is not a joke. I have food insecurity. At every meal, I think of the next one and whether there is food available. My daughter has it too….. epigenetics.

I think that the only way I could love my parents was to have compassion for them. Once you see another person’s damaged small child, then how can you not feel compassion for them?

With patients I learned to be very very delicate and gentle about asking about the cloud. Just gently. Sometimes people open up on the first visit. Sometimes they shut tight like a clam and I back off. Sometimes they return the next visit or the 3rd or the 8th or after a couple years… and say, “You asked me about this.”

It’s nonverbal communication. The reason why I take the WHOLE history MYSELF at the first visit is for the nonverbal communication. When the person doesn’t want to answer a question, veers away from a topic, switches subjects: there is my cloud. That is where the hurt is. That is where the pain is.

The first cracks in the United States medical system collapse are appearing. Not doctors quitting, not nurses, but medical assistants. Here is an article about how clinics all over can’t hire medical assistants. Because there are tons of jobs, employers are offering more money, why would you do a job where you may well be exposed to covid-19 if you can do something else? And make as much money or more….

The cracks will widen. Ironically doctors are doing what I have done for the last ten years: “rooming” the patients themselves. Ha, ha, good may come out of it, after the disaster. Which is getting worse fast. If people don’t put their masks on and don’t social distance and don’t get vaccinated, I predict more deaths in the US this winter then last winter. Sigh. And in the US we will run out of medical assistants, doctors and nurses.

It is ok to gently ask a patient about that cloud. It is not polite to “see” it in a Family Medicine colleague or and administrator. I can’t “not see” it. I can’t turn it off. However, on the plane my behavior changed even before I could put all of this into words. The words are that I have to be as gentle with everyone as I am with patients.

And the trip felt so odd. I was putting this into effect before I had words. That is how my intuition works. But everyone, absolutely everyone, was kind to me on the trip. A Chicago policeman helped me in the train station and was super kind. It was weird, weird, weird, with bells on. It took me a few more days to be able to put it into words.

Problem intuited, after 60 years of study. Implementation of solution proceeds immediately. Logical brain struggling to catch up, but results satisfactory long before logical brain gets a handle on it.

Pretty weird, eh? I think so. My doctor said that an episode of Big Bang Theory could be written just by following me around for a day. I think it was both saying that I am smart AND that I have no social skills. But I have implemented the social skills program already. She’s just upset that I gave her justifiable hell two visits ago and also…. I do hide my brain. Because sometimes colleagues are jealous.

But maybe they should not be jealous. Maybe they can learn it too. Maybe I can teach. Maybe….

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Ride forth

I wrote this poem more then ten years ago, but since I want to reference it in an essay, I am putting it up here now.

Ride Forth


My grandmother
Packed all her troubles in her saddlebags
And rode forth singing

My mother
Packed all her troubles in her saddlebags
And rode forth singing

My father
Was the only one
Who ever saw the contents
He tried to drown them

My mother was loved
For her charm

I ride forth
Sometimes I sing
Sometimes I weep

My saddlebags are empty

Prayer flags flutter
Slowly shred
In the wind

I write my troubles
And my joys
On cloth
And thank the Beloved
For each

My horse is white
When I sing
Black
When I cry
A rainbow of colors
In between
The whole spectrum
That the Beloved allows

After I emptied
My saddlebags
I tried to leave them
But the people I meet
Most, most, most
Are frightened

A naked woman
On a naked horse

I had to leave my village
When I learned to ride her
Made friends with her
Beloved
My village does not allow tears
When she turns black
Their saddlebags squirm and fight
The people try to throw them on my horse

In other places
The horses are all black
The white aspect of the Beloved
Frightens them
And they attack

I carry saddlebags
And Beloved is a gentle dapple gray
And the illusion of clothes surrounds me
When we meet new people
Until we know
It is safe to shine
Bright
And dark

I hope that others ride with the Beloved
In full rainbow

I ride forth
Sometimes I sing
Sometimes I weep

Even the color lonely
Is a part of the Beloved

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Pull saw work

I need to work on my tree house.

The tree has grown. The walls of the treehouse are digging in to the bark in places.

I looked for my pull saw, but haven’t found it yet. I did find three saws. I did some trimming last night, but I was pretty tired and up a tree and didn’t take my oxygen up. I would saw a little bit then get short of breath and stop. The pull saw would be a much better tool for the job than the crosscut.

I have a swiss army knife with a saw and one of those emergency kit saw wires, that probably would make me swear if I tried to use it.

Now, where did I put the pull saw?