Tag Archives: fear

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Covid-19: long haul II

A few days ago my primary care doctor texts that she wonders if I have the autoimmune form of fibromyalgia.

Red alert. I have not heard about this.

I did a search last night and find this: https://www.sciencedaily.com/releases/2021/07/210701120703.htm.

Now, if you have been paying attention, you know that I was diagnosed with PANDAS in 2012, though Isuspect that it is really PANS. Both are autoimmune disorders. I also think that long haul covid is the same thing or something similar.

Meanwhile, they are now saying Covid-19 Long Haul may ALSO be an autoimmune disorder. Multiple sites below.

There is a paper in Nature that I don’t have access to, annoyingly enough. The fibromyalgia story in the above story is that they have spun antibodies down from human serum of affected and unaffected people and then injected them into mice. The mice get fibromyalgia symptoms from the affected antibodies but not from the unaffected ones. The symptoms in the mice go away when the antibodies fade out, in a few weeks. Aha.

The long haul story says that death from Covid-19 may be an autoimmune response, the antibodies going really nuts and making people bleed or their lungs close down. That is, swell shut. They have been drawing blood to study at different stages of Covid-19 and also checking autopsy patients. Usually autoimmune diseases are more prevalent in women then men but Covid-19 seems to be worse in men. This: “The mechanisms behind the production of such autoantibodies aren’t yet clear. Widespread and long-term inflammation during severe COVID-19 may cause the immune system to produce antibodies to pieces of the virus it wouldn’t normally recognize. Some of those pieces might resemble human proteins enough to trigger the production of autoantibodies.

Excessive inflammation could also boost production of autoantibodies that had previously only existed in the body at very low levels. Vaccination against COVID-19 is much less inflammatory than infection with the virus. In a separate study that looked at COVID vaccination, none of the healthy volunteers developed autoantibodies.” (2)(*)

Here is another fibromyalgia paper: https://www.verywellhealth.com/autoimmunity-neuroinflammation-in-fibromyalgia-5197944. That paper lists the autoantibodies that they are finding in fibromyalgia including gangliosides. The fourth antibody in PANDAS/PANS is anti-lysoganglioside. Aha! So this is sparking a serious revolution in medicine: it is looking like many of the mysterious and difficult to describe and quantify diseases may be autoantibody disorders. The anti-ganglioside antibodies were found in 71% of fibromyalgia patients. There are seven antibodies listed, including one to serotonin. In PANS, they are blaming two anti-dopamine antibodies. None of the fibromyalgia patients had ALL seven, but all of them had some of them. A different pattern in every patient, because we all make different antibodies. Fascinating.

One more: https://pubmed.ncbi.nlm.nih.gov/28339361/. People with lupus are more likely to have fibromyalgia and visa versa. “Increasing evidence indicates that N-methyl-D-aspartate receptors (NMDARs) play a major role in the induction and maintenance of central sensitisation with chronic pain. In this study, we evaluated the role of anti-NMDAR antibodies in the development of FM in patients with SLE.” Lupus and fibromyalgia share an autoantibody. Holy cats. NMDA is ALSO a neurotransmitter. Makes me wonder quite a bit about “psychiatric” disorders.

Remember that we make up all the words. So the autoimmune diseases are usually found by testing for a few antibodies. In the most common autoimmune disorder, hypothyroidism, we usually check the TSH and T4 level, so patient hormone levels rather than antibody levels. Over the last 30 years, we are able to test for more antibodies. Systemic lupus erythematosis, celiac, rheumatoid arthritis, juvenile rheumatoid arthritis. When I was in medical school in 1989, the rheumatology book was an inch and a half thick and there were loads of different patterns of disease. I am sure it is twice as thick now. Our initial test for autoimmune disease is for inflammation: an antinuclear antibody and an erythrocyte sedimentation rate. Some people have rheumatoid arthritis but their RF is negative: they have “sero-negative” rheumatiod arthritis, which is more likely “a different autoantibody that we have not tracked down” rheumatoid arthritis. In chronic fatigue and fibromyalgia, the antinuclear antibody and erythrocyte sedimentation rate are usually normal. I suspect both disorders of being “post” inflammation.

My prediction is a serious medical revolution, where we start regularly testing for autoantibodies. Whether that will be something like a pregnancy test but with hundreds of autoantibodies tested for, or whether there are some key indicator ones that we can find, is not clear. At any rate, trauma, stress and infection all increase the likelihood of getting one of these disorders and we have to figure out how to lower the load of all three.

Do you think people are instinctively quitting their jobs?

I had a phone visit with my pulmonologist yesterday. She was running about 35 minutes late, I sat on Zoom until she showed up. She looks exhausted. “We have less doctors and more patients.” she says. “I was on call for the critical care unit last week and I am on call Monday and Tuesday.” “Please take care of yourself,” I say, “We really need you.” She is smiling the whole time. She is worried about me dropping weight and I am worried about her.

Prayers and blessings all around.


1. https://www.cedars-sinai.org/newsroom/covid-19-can-trigger-self-attacking-antibodies/
2. https://www.nih.gov/news-events/nih-research-matters/autoimmune-response-found-many-covid-19
1. https://www.cedars-sinai.org/newsroom/covid-19-can-trigger-self-attacking-antibodies/
2. https://www.nih.gov/news-events/nih-research-matters/autoimmune-response-found-many-covid-19
3. https://thehill.com/policy/healthcare/591528-long-covid-study-author-explains-four-factors-that-can-predict-how-you-get
4. https://www.the-scientist.com/news-opinion/studies-identify-risk-factors-for-long-covid-69648
5. https://www.dailymail.co.uk/health/article-10436473/Is-people-sicker-Covid-19.html
*If that paragraph does not make people get the vaccine, they are living completely in a mad dream world, IMHO.
6. https://www.nih.gov/news-events/nih-research-matters/misdirected-antibodies-linked-severe-covid-19

For the Ragtag Daily Prompt: flickering. As in flickering hope.

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Ode to defiance

Is oppositional defiance running YOUR life?

I am oppositional defiant. I have been for as long as I can remember. I ALWAYS want to argue when someone tells me to do something or gives me advice. BUT, I have learned to work with it.

I work with it by arguing with myself.

Give me a topic. Or advice. I will promptly argue the opposite, internally or externally. Then I will argue the original side. Then my demon fights my angel until they are both tired and decide to go have a beer. Somewhere along the way I will make a decision and also I will laugh, because it’s funny.

B has figured this out. “You argue with EVERYTHING.” he says.

“Yes, and if there is no one around, I argue with myself. All the time.”

However, he is also oppositional defiant. He is smart too, and doing some self examination.

“I am thinking about my life. I think ALL of my important decisions were oppositional defiant ones.”

“Someone told you you couldn’t do that?

“Yes.”

He’s chewing on that. Heh. He accuses ME of overthinking. I replied that I am making up for his underthinking, heh. He suggests that I STOP overthinking and I say, “You want to DESTROY the SOURCE of my poetry?” Double heh.

The point is, some of us are oppositional defiant, but really, we don’t want that to run our lives EITHER. We don’t want ANYTHING or ANYONE to tell us what to do.

B says, “I think that everyone refusing the vaccine is oppositional defiant.” He has a lot of friends, both liberal and conservative.

“That is interesting.” I say. And I wonder if it is worth dying for, to be oppositional defiant. Not if it’s running your life, right? I don’t want ANYTHING to run my life except ME.

So then I spend a bunch of time arguing with myself about the causes of refusing the vaccine. And I have not reached a conclusion. Yet.

I took the photograph at the Bellevue Mall on Monday. A three story waterfall. Really? Isn’t there enough rain in Seattle? We should have a three story sun instead.

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atmospheric river

The current flooding rivers in the Pacific Northwest (1) now are ascribed to an atmospheric river. Atmospheric rivers are long narrow weather regions that carry enormous amounts of moisture from the tropics in the sky. This sky river carries water vapor and moves with the weather, “carrying an amount of water vapor roughly equivalent to the average flow of water at the mouth of the Mississippi River.”(2) When they make landfall, they can release the water in the form of rain or snow.

They can stall over watersheds and release huge amounts of wind and rain and cause severe flooding. The atmospheric river from Hawaii to the Pacific Northwest is called the “Pineapple Express”. “On average, about 30-50% of annual precipitation on the West Coast occurs in just a few AR events and contributes to the water supply and flooding.”(2) An atmospheric river is approximately 250-375 miles wide.

“Not all atmospheric rivers cause damage; most are weak systems that often provide beneficial rain or snow that is crucial to the water supply.”(2) If it were colder we would have an amazing snow pack right now.

The bomb cyclone that came through a few weeks ago caused much less damage. An atmospheric river does not sound as dramatic, but the drone pictures of houses and cars deep in water (1) tell a different story. There is road and bridge damage and already talk of Thanksgiving travel disrupted.

(1) https://www.accuweather.com/en/winter-weather/pineapple-express-pummels-northwest-british-columbia/1047699

(2) https://www.noaa.gov/stories/what-are-atmospheric-rivers

(3) Meanwhile the Olympic Peninsula still has a section cut off: https://www.peninsuladailynews.com/news/flooded-roadways-cut-off-west-end/

The photographs are of the Sol Duc River, taken by a friend. The river rising and huge amounts of debris being carried down the river. The huge log in the earlier pictures that was on the other side of the river, is gone.

Sol Duc River Tuesday Oct 26, 2021
Sol Duc River Sunday November 7, 2021
Sol Duc River Sunday November 14, 2021

Next is the heading photograph, from Monday, November 15, 2021.

Sol Duc River Monday November 15, 2021. Carrying whole trees downriver.
Rialto Beach with all of the wood washed down the rivers, November 16, 2021.
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apparition

We are fishing and playing a little and then we hear something. I stick my head up. Dad does too, and my sisters. What is it? It is making noises! There, on the beach. Something roaring in two tones!

There are two. The smaller one is doing most of the roaring. It is weird. Two tones, a low growly one and a higher one that sings.

It is creepy, that smaller one. I think it sees us. It has a mechanical eye. Dad says, “Dive.” We talk under water. Maybe it is trying to steal our souls or lure us to death on the beach.

We do have to come up for air though. Now they both roar. Dad barks: “STOP” and what do the horrors do? They try to imitate him! Are they making fun of him?

Now the smaller one is just making high song noises. Sort of like a creepy bird. It keeps going back to the double growl, though.

Dad says, “Come on.” We dive and head the other way along the beach. The appartitions are picking up things from the beach. I am very glad they didn’t get us. This time.

For the Ragtag Daily Prompt: apparition.

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Bears all his sons away

Disclaimer: I am not Native American. I am not male. I did not live here when the ships arrived. I wrote this thinking about a dream a friend told me, about a bear. So it’s the fault of a dream bear, this story.

One
I am wailing. I am crying. The Bear came today, our bear, the tribe’s bear, our Spirit.

But he didn’t just walk through camp and take fish and his tribute.

He took my son.

He walked right up to where my wife stood still, as we must when he comes, and he lifted the boy in his paws. The boy was quiet and still, he did well, he was brave, but when the bear turned to leave, he called once.

Then our bear dropped to three legs, my son in the fourth, and turned and left.

My son, my son, my heart, my joy. Spirit Bear, return him to me!

Two
We fought, argued, for a very short time. The Shaman said that if Spirit Bear wants my son, he shall have him.

He does have him, I said, but I want him back. The Shaman knew that was true. Some shook their heads and say that my son is already dead, but most agreed with me. We were on the trail nearly immediately. The bear should not be able to move as quickly as usual when he is carrying my son. I dread evidence of my son’s loss, that he will be eaten. But that has never happened, in the history, in the songs. The Shaman said as much. But neither has a bear taken a chief’s son.

Three
Spirit Bear is moving amazingly fast on three legs. He is headed for the mountains. Not a surprise. My son may get cold. But bears are warm. My son has not been eaten.

Four
We have to make camp. I am so angry that we have not caught Spirit Bear. Out of our home camp he is fair game.

We do the Bear Dance, four times. We did not bring the masks and the young men dance the women’s part and one sings the woman’s part. We made quick rough masks and costumes. The Spirits will forgive us. This is past all understanding.

What does a Spirit Bear want with my son? Four years. No one knows.

Five
Day again. I am up before dawn praying for light, for my son, to find the Spirit Bear.

Six
We are hot on the trail. We find that Spirit Bear did sleep and rest. My son is dropping beads. Smart boy. Each bead means that he is still alive and relatively unhurt.

Seven
We have spotted them. Spirit Bear stood and looked down at us, my son tucked against his side. My son very slowly raised his arm, so he knows.

Eight
We are approaching the peak. Everyone is tired from the climb and hungry and thirsty. Yet we keep going. No one complains.

Nine
We reach the peak and Spirit Bear and my son. We arm our spears and arrows, but my son shouts “No! Look!” We turn. We see the water. There is something in the water. It has tannish wings that are filled with wind. It is huge compared with our boats.

We turn to my son. He stands and Spirit Bear leaves, ambling down the mountain, quickly, gone. I hurry to my son, sweep him up. He starts shaking and then cries, leaning his head into me.

We turn and watch the tan winged thing, which is coming against the wind. It comes at an angle and then turns, to the opposite angle, yet still it comes. We know this is new and that there can be terror or joy, we do not know which. There will be learning, we know that.

My son falls asleep. We carry him down to water and camp. We are all singing quietly, the song of new things, fear and joy. The Shaman will welcome us when we are home, and we will prepare for the winged thing. We do not know what it will bring.

We thank the Spirit Bear for warning us, for telling us to prepare.

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released like stars

I have had strep A sepsis and pneumonia twice. It was terrifying and I ended up having to take care of myself. I would be dead if I was not a physician.

Not to be named obscure website helped to sustain me, because it was a place I could go while I was alone, terrified and very very ill. The bout in 2014 took me out of clinic for six months and then I was barely able to work seeing half my usual number of patients. My local hospital refused to help me, but other people did. I am deeply deeply grateful to the people who did help me, including people on everything2.com that I have never met.

I wrote this in June 2014.

released like stars

________________

My sister used to tell me

“Everything2 is like a brain.

That’s what attracted me.

All the nodes, like neurons

Connected to each other more and more.”

Or something like that.


Isn’t it annoying?

Now that I’ve taken that memory out

Dusted it off

Embellished it

Who knows what she really said


Flashes of light now

And some where I blank out entirely

For just a moment

Only when I’ve eaten

I’m still avoiding carbs


Could be absence seizures

But she said seizures hurt

These do not hurt

And are accompanied by muscle twitches

Or muscles rolling gently across my frame


I am scared at first

Because I think they are neurons

Bursting into brain flame

And burning out

Brief candles


But I don’t think that’s right either

I think it is plaques

Deposits of antibody

Small pushpins in the wrong place

Being released like stars

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writhe

You are sick as shit.

You go to the ER.

You finally feel safe, on a bed, they will save me, you think.

The nurse is on autopilot. He does not seem concerned. You are shaking a little as he arranges you on the bed. He puts the heart monitor stickers on and hooks you up. Blood pressure cuff, pulse ox. Blood pressure is fine, pulse is a bit fast, at 110.

You notice he is not making eye contact.

“I’m cold.” you whisper.

He doesn’t reply. He keeps messing with the wires. He puts the call button next to your hand. He leaves and returns with a warm blanket. It feels wonderful. He doesn’t say a word.

You feel better under the warmth.

The respiratory therapist wheels in the ECG machine. You smile at her but again, no eye contact. She puts more stickers on you. “Hold a deep breath.” The ECG spits out. She takes it and leaves.

The radiology tech wheels the portable xray machine in. You watch his face but don’t bother to smile. He looks everywhere but at you. It’s a bit creepy. Are they all robots? It’s 3 pm, not 3 am. “Lean forward,” says the tech, putting the radiology cartridge behind you. “Take a deep breath and hold it.” He takes the cartridge and leaves.

The nurse is back. Puts in the iv and draws 5 tubes of blood. You are shivering a little. He doesn’t seem to notice. You think about another warm blanket. The iv fluid starts and you can feel it running cold into your arm.

There is a child crying in the ER, in some other room. You start noticing the noises. Machines beeping. People typing on computer keyboards. No one is talking. The kid gives a howl of protest, rising and then is abruptly quiet.

Your hands and feet are tingling and burning. You writhe a little under the blanket. Sensation is returning to your hands and feet. It hurts but it is also good. You were at the point where all your feeling had shrunk to a tiny spark in the center of your chest. As the iv fluid runs, feeling slowly spreads out from that.

The doctor comes in. Grumpy, clearly. “Lean forward.” Listens to your chest. “Sounds clear.”

“It’s been hurting for 5 days. It hurts to breathe. Burns.” You are anxious as hell. BELIEVE ME.

The ER doc gives a little shrug. “Oxygen sats are fine.” He does a half-assed exam. He leaves.

You look at your feet, taking your socks off. Because he didn’t. There are two black spots, a couple millimeters across, old blood. Those are new.

You press the call button.

Time goes by. The nurse floats back in.

“Look. Tell the doctor to look. These are petechiae.” You point to the black spots.

If the nurse had laser vision, your feet would be burned. The nurse glares at your feet. He goes out.

The doc comes in and looks at your feet.

“They are petichiae. I have an infection.”

He gives a tiny shrug. “Your chest xray looks clear. Your labs are normal. You are not running a fever.”

“I am on azithromycin for walking pneumonia. I suddenly felt like all the fluid was running out of my arms and legs. I am worried that I am septic.”

“Blood pressure is fine. You are really really anxious.”

You are furious. It probably shows on your face. You are terrified.

“Could it be an antibiotic reaction?”

Shrug. “No rash.”

“Except the petechiae.” A sign of sepsis.

“I will change the antibiotics. Clindamycin.” He leaves.

You lie back, terrified. He doesn’t believe you. He is sending you home, septic. You will probably die.

The nurse comes in. Removes the iv and unhooks the monitor and the blood pressure cuff. You get dressed, numb and frightened and cold. The nurse goes out and returns. He recites the patient instructions in a bored voice and gives you the first dose of clindamycin.

You walk shakily to the door of the emergency room. To go home. While you are septic and they don’t believe you. You know what happens with sepsis: your blood pressure will drop and then organ damage and then IF you survive you could have heart damage or lung damage or brain damage and you might not anyhow.

You go home.

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Falling

Poem: Falling

I was asked to write a poem from the perspective of the angels in my dream. I have posted this once before, but not with all the other Falling Angels poems. It is a sequence of poems responding to a dream.

Falling

We are stars
We are born
We are made to burn
We flame
We explode or burn out
We are made to die

We are angels
We are made to fall
We all fall
We are white falling in black space
Or black falling in white space
If you prefer
It doesn’t matter
It is the contrast that is important
There is no light without dark

We are angels
We are made to fall
We all fall

Do you fear
your fear?
your anger?
Your grief?
falling?
death?

We fall for you

If you reject
your fear
your anger
your grief
falling
death

We will fall for you
We accept falling

All must fall

If you accept
your fear
your anger
your grief
falling
death

We will fall with you

You will fall with us

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phoenix rising

Written in 2009.

Set a torch to me
Why don’t you?

It’s not the tearing sound of fabric
A small rip
And now a tear
That I feel

It’s the torch

I’ve been here before
A job where the idealistic came
As moths to the flame
Self-immolation
Because they had ideals

I watched and burned and rose

It’s the torch
The flames that rise
As the witch is burned
Tilts back her head
In ecstasy and knowledge
Eager to learn what she can
From these burning brands

In the burning we learn
In pain we learn
If we can remain open
Ashes fall to the ground
Buckets of water
Wash any remains to grey mud
Gone, punished
Relief for the frightened
An example has been set

No but what stirs at night
Moon or none
What rises from the mud
The ashes
Takes form
Takes flight
Laughing

Set a torch to me
Why don’t you?
And see what is created