website ethics and mine

Two days ago I wrote to the owner of the website that “separated” me for “not explicitly breaking the rules”.

I have not gotten an answer.

Doesn’t matter, you say. I disagree. I think our ethics matters and it matters on line. Isn’t that part of what we are fighting about?

Let’s drill down. The editors stated on this obscure not to be named site that they were tightening rules and removing write-ups that should be logs or are just not high enough quality, and letting the writers repost them as logs. So far they have removed over 250 of my writeups. Ironically, I was one of the two most prolific writers in the last year. Let’s kill the golden goose because she’s annoying, won’t we? The other writer has not been “separated”.

I note that they have removed my write up called “birth of ——–“. Now, this interests me. This was a well received write up, had up votes, and was the start of a category. The category was people explaining how they chose their on line name.

So: the editors are liars and abusing their power. They have removed a well received and well liked write up because they have personal animosity towards me. I have protested the removal of 250+ writeups and asked that they be reposted as logs. No answer.

The other writeups in the how I chose my name category are still there. So this is PERSONAL and the editors of the site are unethical.

Therefore, I hope the site dies. Or gets rid of those editors. I think I want it to die, even though it has writing by my sister. This does matter. As a species, we will either learn to be fair and human on line as well as off line, or we will end in conflagration. The site will certainly not be there if we start lobbing nuclear bombs at each other. The owner works for the US government. Why is he/she not paying attention to this obscure website that he/she owns?

Whether or not the world burns this month, if the editors are manifestly unfair on the site, the site will die and deserves to die. I wish that I could have my sister’s drafts before it shuts down.

I ended my email that is not answered with this: Good luck. I hope that ethics matters to both of us.

Thank you.

on line site name

_______________________

I will not name the site here or anywhere again, until and unless those editors are shut down and the site becomes ethical.

We are fighting this fight as a species, as humanity. We have to learn to be as ethical on line as we are in person. Well, you say, some people AREN’T ethical. Yes, that is true. As a rural physician, my goal is to take care of ANYONE WHO COMES IN. The emergency room physician cares for the family of four hit by the drunk and the drunk too, even if there is a dead child in the family of four. We set our judgement aside and do the best for each and every patient, regardless of the story. At least, that is the goal. It is the highest goal I know of.

Blessings and be your ethical self on line. As my children said to me when I threw their father out of the house once, “We don’t care what he does. We want you to be polite to dad no matter what.” And they were RIGHT! We answer to ourselves and to the Beloved and to our children.

Blessings.

The photo is me and my sister, dancing before my wedding in 1989. She died of cancer in 2012.

abuse, enabler style

I am raised by a family of triangulating enablers and enablees.

The enablers are my mother and two uncles. They are very very smart. Let me qualify that: they are very very smart intellectually. Emotionally, not so much.

The two uncles have PhDs and are professors. They marry wives that are lessor in their view. One tells my mother that he wants a woman who is not as bright as he is. I don’t know if she is less bright, but she is a hella better athlete. I also have the impression that she had a time where she drank too much.

The other uncle marries a woman who tends to be a hypochondriac. He takes her to India, where she gets polio while pregnant. She is then a sick hypochondriac, which is very difficult. The ill can control their families by planning things and then getting sick at the last moment. On the other hand, chronic fatigue and fibromyalgia are very real and we are on the edge of figuring them out. That uncle divorces his wife and I instantly like both of them better. They stop being a weird unit and are suddenly individuals.

My mother tells me, when I am in college, “I wondered if your father was an alcoholic when I married him.” I want to hit her. She won’t leave him, she won’t stop enabling him, they scream at each other at 2 am often. Now I wonder about that and conclude that either screaming at someone was something she needed or she was an alchoholic too.

After my mother dies, I ask my uncle, what about his parents? After all, the three of them learned enabling somewhere and it pretty much has to be at home.

My uncle tells me his parents had a PERFECT marriage and that my grandmother LOVED being the wife of a physician and professor.

Um, so, then, why did she pay my tuition to medical school, uncle?

And I think about my mother’s stories. Once, she says, your Uncle Jim bet his friend Dick that Dick was too chicken to shoot a cigarette out of Jim’s mother’s mouth. Ooooo. With a rubber band shooter. Yes, my grandmother. Bob took the bet and succeeded. My grandmother roared with anger and the two boys ran like hell and hid.

And someone in the family tells me: your grandfather helped your grandmother control her temper.

There it is. The enabler/enablee.

The enablers die first. My grandfather of cancer at 79, my mother of cancer at 62. The cousins are all angry at me because I won’t follow the family rules and triangulate in a satisfactory manner, and I don’t care any more. I am ignoring them. I got my father’s banjo back and I am done. The two cousins I own land with jointly are not the worst triangulators.

I have to remind myself: for them, this is love. For some people, controlling or being controlled is what functions as love and intimacy. Fighting and tears when person A talks to person C about person B and person C then lets person B know, that is how they feel close. It is not only families, but communities. Clay Shirky’s description of a group being it’s own worst enemy describes the same patterns: identify an enemy inside or outside the group and then everyone comes together against the enemy. The enemy says the wrong thing, doesn’t worship the right god/desses, wears different clothes, looks different. And the group feels safer once the scapegoat has been killed, the guy has been burned. It would be nice if we could burn a ritual guy instead of torching each other.

The real anger is in the enabler. They control it by having the enablee express it. Then it is not “theirs”. They can feel superior to the enablee who is out of control. Sadly, the problem is only fixed temporarily and they will need their anger expressed again and again and again.

The cycle can be broken. It is a lot of work.

Blessings.

______________________________________________

Sorrow

I used to stop by more

but the people were less and less

the interactions faded to grey

I didn’t feel loved

I used to be ok with that

not feeling loved

not feeling valued

but now I want to be loved

And I am loved, to my surprise

as if a little love

has opened longing

so that I want more love


I want to be loved and feel loved

I send everyone love

even those who have been mean

and the incessant downvoters

and those who have me blocked

or don’t answer or ignore

or leave the catbox when I show up

I send love to you too


but now that I have a small crack

of love in my life, like the sun

shining on a crack in concrete

the seed stirs in sun and water

and grows

written 12/26/17. I wrote this about another writing site. It is falling to bits, like a old building not maintained. It makes me sad, because it is where my sister used to write. She died in 2012 and I still often miss her.

Covid-19: Approach to Long Haul

Covid-19: Approach to Long Haul

This is written primarily for physicians, but is for anyone to read. This is a working theory.

I am very interested in Long Haul because I was diagnosed with PANS by an older psychiatrist who worked exclusively with physicians in 2012. That was during my third flare. The evidence is mounting that Long Haul is an autoimmune disorder like PANS. I am sharing my approach to Long Haul based on both my clinic and personal experience.

Step 1. Validate the patient. Patients are terrified, understandably, to have something “like” chronic fatigue, fibromyalgia, or are worrying that they are “crazy”. Evidence is appearing that Long Haul, chronic fatigue and fibromyalgia are all complex autoimmune disorders with multiple antibodies. We do not yet have vast antibody tests. So the first step is to say that we believe patients and also that we can help. This is a very new and evolving field. I tell patients that it will change fast over the next few years. What I tell them today may change within a year as we get new information. If this makes them anxious, remind them of the Women’s Health Initiative and how that changed hormone therapy, and that cancer treatments keep improving.

Step 2. Lower stress and antibody levels. When we are high stress, cortisol and adrenaline go up and impair the immune system. The immune system is fired up and looking for something to do. Bacteria like strep A have evolved with us and have surface proteins that “look like us”. Our bodies make antibodies to the Strep A or Covid-19 and sometimes those antibodies attack us too, because our own proteins look the same. One way of lowering the antibody level is sweating. Hot bath or shower, sauna, hot tub, exercise. Support these and explain. A second way to lower the antibody level is to quiet the sympathetic nervous system and activate the parasympathetic nervous system. The parasympathetic is the quiet, relaxed and laughing one. Where does the patient feel safe, relaxed, quiet? After my father died, leaving a complicated and messy estate with an out of date will, I did a Sudoku daily for a year. I realized that the Sudoku relaxed me because I could not solve the estate quickly, but I could nearly always solve the Sudoku. Stupid cat videos, rocking chairs, knitting, gentle walk in the neighborhood if it feels safe, a walk in a mall (without one’s purse if overspending is an issue) — how does this particular person relax? Teach the slow breathing: in for a slow count of five and out for a slow count of five. Or square breathing: in for five, hold five, out five, in five. Twenty minutes of slow breathing supposedly moves almost everyone from sympathetic to parasympathetic. It may take practice and feel unfamiliar: I have had a veteran say that it felt very very weird to relax and he was not used to it. He kept at it.

Step 3. Symptom picture. At present I am basing this on my own experience with PANS. This is my working theory. Antibodies can block receptors or “turn the key” and activate receptors. Buprenorphine does BOTH (though it is not an antibody): at lower levels it turns the key and at higher levels it blocks. I would ask specifically about five fields. You many well be able to come up with more.

a. Brain function. In my PANS, I have antibodies to dopamine that turn dopamine on very high. Other physicians assume that I am manic. I am not quite manic, but it certainly feels awful. I feel like I have been shot out of a cannon when I wake up, with the morning cortisol rise. For me, the caffeine in coffee calms me, and my assumption is that it displaces the anti-dopamine antibodies. Tea does not work. I quit coffee for seven years until the latest flare. Albuterol doesn’t work. Terbutaline does work. I don’t know about theophylline or adderall, I have not tried them. If someone has “brain fog”, I assume that they have blocker antibodies OR be sure to ask if they were different in the first 4-6 months of the illness. For me, the antibodies rise for about 2-3 months and then take 2-3 months to drop. I have a lot of fatigue when they finally leave and this time I could tell the day that the last antibodies “fell off” or dropped to my “normal” level.
For blocked people, does caffeine help? How about albuterol? Adderall, theophylline, SSRIs. Every person will have different antibodies. Treatment needs to be tailored.

b. Muscle function. My anti-tubulin antibody (I have PANS, remember?) shuts down my “fast twitch” but not my “slow twitch” muscles. Tubulin is what makes the lung cilia function, so presumably mine are paralyzed during a flare and that is why I get pneumonia. I am tachycardic, resting heart rate 100 and walking slowly or talking heart rate 135, so I get very short of breath. Both the lung dysfunction and antibodies that upregulate my dopamine receptors make me tachycardic. I think that the people who can barely get out of bed with chronic fatigue have both fast and slow twitch muscles blocked. They need validation and lower stress. With support, perhaps the antibody level can be lowered enough that they can function again. I also found that my muscles hurt when my blood sugar was up and that if I keep it low, I have minimal muscle pain. I do not know if this is true for other people.

c. Gut function. In PANS, there appears to be an antibody to lysoganglioside. I don’t understand it but when I am sick, I cut carbohydrates way back or I am horribly ill. I tolerate lactose but not fructose, sucrose or gluten. One year after getting my last flare, I can eat everything except gluten. With this round I figured out that rising blood sugar when I am sick makes me acidic. This in turn worsens lung function more, as my body automatically slows my breathing to balance the acidity. I found that taking bicarb before a meal helped tremendously. In the worst/highest antibody part of the flare, I eat fats, because anything else makes me ill. SO: what can the patient eat or not eat and support them. Food intolerances are on the rise. Ask if there are foods that they cannot eat and support them not eating them. They can go to a very restricted diet that works for them and wait three weeks. After three weeks, food antibody levels are supposed to drop. They can start adding foods back in, one every three days. I do not know if this will work in a bad flare, the antibodies may be too high.

d. Lungs: do a resting heart rate and oxygen saturation. Do a walking heart rate and sat. Then do a LOADED heart rate and sat, with the person carrying the equivalent of two bags of groceries or their toddler. If they are young, they may hold their sats, but if their heart rate jumps to 135, that is like running a continuous marathon. Try oxygen and see if the heart rate comes down. Sleep apnea testing is also highly recommended. If they are tachycardic with daily activities, of course they have fatigue! Rest. Patients can learn to check a pulse or have a pulse ox, but fingers and second hand are cheap.

d. Other. I am reading that the main complaints in Long Haul are fatigue, brain issues, tachycardia and shortness of breath. What else really bothers the person? Sound sensitivity, loss of the sense of smell. The first step in helping with this is to listen and validate.

Damaged or blessed?

Am I damaged or blessed to have PANS?

Damaged because it has put me out six times? Four times with pneumonia, once with preterm labor, and once with mononucleosis. Plus getting really sick with strep A as a kid, an earache that had me crying with pain at age 8, coughs in medical school that would hang on for six weeks and not respond to albuterol. Only rest would help. A year this time and not better yet, 6 months out last time and then seven years working half time. In 2012 out two months. 2005 out two months. Preterm labor out 6 months. Mononucleosis: dropped ten pounds and did not feel better or gain it back for two months. How much income have I lost? A lot. Am I damaged?

Blessed because I am not dead? My sister dies of cancer at 49, my mother at 61, my mother’s father at 79. All three married people who had “anger issues”. And all three got cancer.

I think that they had anger that they could not reach.

I do not think that ALL cancer is buried, unexamined, unresolved anger. But I am starting to see a medical pathway that could lead from buried anger or other buried emotions to illness and death. The buried emotions are stressful. The body tries to hold the stress. The body works very hard at it. The conscious mind is not aware. This is the realm of the unconscious. The stress, the unresolved trauma, anger, grief, whatever, triggers antibodies. Heightened sympathetic nervous system, higher adrenaline and higher cortisol. Cortisol is the steroid system. Steroids help to lower inflammation but they also impair the immune system. The immune system is chronically suppressed, trashed, and then it can’t do its job. Anti lysoganglioside antibodies form and block the lysogangliosides. The lysogangliosides are supposed to clean house in the brain. They can’t clean house, they are paralyzed. And the brain forms plaques: dementia. Or some other antibody forms that blocks cancer removing cells in the immune system: and there it is. Cancer.

We all have cancer all the time, that our immune system is removing. That’s a little weird to think about, isn’t it? So we need healthy immune systems, we need the parasympathetic nervous system, we need to relax, we need to play, we need to laugh ourselves silly at stupid cat videos, we need to make ridiculous memes go viral on TikTok, we need to use the power of the internet to drive the cost of a share up just to fuck with the rich Bosses, because we are tired of them fucking us over.

So, says my sig other, or he who used to be. You need to avoid stress, in order to not get sick again.

Well. I stopped eating on Saturday a week ago and ate minimal calories and mostly high protein and fat. Because I was pretty sure he was breaking up with me. He felt the same about me. I was terrified when we walked two days ago, so I wore the dragon shirt. Most of all I wanted not to yell.

Neither of us yelled. We both listened. He doesn’t know why he has shut me out of three areas of his life, and the three most important ones. It isn’t me. He is aware that it is him. He was not really aware that he was doing it. I am trained to hide emotions, from childhood in my crazy family and then physicians are trained as well. I cry with patients sometimes, when we find that their cancer is back, or other things like that. The child dying. But I can hold a calm expression even when a person tells me that they are hearing voices telling them to kill themselves and would I please take out the antenna in their tooth. So I sat hard on my emotions for ten months. Until I thought the right time had come.

Even then, I did my best and screwed up. We’d opened up one thing and I thought the rest would be ok. I sent an email. Whoa, boy, it was NOT ok, and I got yelled at. I burst into tears. I didn’t feel like yelling at all, I was crushed. But it is ok, it had to come out. The Year of the Ox is almost over. I hope the Year of the Tiger is less horrible. But at the same time, I would not trade the time with him for anything.

Damaged or blessed? Cursed or blessed?

Both, I think. All of us.

I am submitting this to today’s Ragtag Daily Prompt, though it is not a hawk.

Top ten causes of death: US 2020

Top ten causes of death US 2020, according to JAMA, here.

Total deaths: 3,358.814
Contrast total deaths in 2019, at 2,854,838. That number had been on a very slow rise since 2015 (2,712,630) to 2019 (2,854,838). That increase over four years is 142,208 people. Then the death rate suddenly jumps 503,976 people in one year. Ouch. I cannot say that I understand vaccine refusal.

1. Coronary artery disease: 690,882
Heart disease still wins. And it went up 4.8%. It is suspected that people were afraid to go to doctors and hospitals. I saw one man early on in the pandemic for “constipation”. He had acute appendicitis. I sent him to the ER and his appendix was removed that day. He thanked me for seeing him in person. Might have missed that one over zoom.

2. Cancer deaths: 598,932
This is cancer deaths, not all of the cancers.

3. Covid-19: 345,342
I have had various people complain that covid-19 is listed as the cause of death when the person has a lot of other problems: heart disease, cancer, heart failure. The death certificate allows for more than one cause but we are supposed to list the final straw first. I cannot list old age, for example. I have to list: renal failure (kidneys stopped working) due to anorexia (stopped eating) due to dementia. That patient was 104 and had had dementia for years. But dementia is not listed as the final cause. So if the person is 92, in a nursing home for dementia and congestive heart failure, gets covid-19 and dies, covid-19 is listed first, and then the others.

4. Unintentional injuries: 192,176
Accidents went up, not down, which is interesting since lots of people were not in their cars. However, remember that the top of the list for unintentional injuries is overdose death, more by legal than illicit drugs. If there is no note, it’s considered unintentional. Well, unless there is a really high blood level of opioids and benzos and alcohol. Then it becomes intentional. They do not always check, especially if the person is elderly. The number rose 11.1%, which seems like a lot of people.

5. Stroke: 159,050
This rose too.

6. Chronic lower respiratory diseases: 151,637
This went down a little. This is mostly COPD and emphysema. So why would it go down? Well, I think bad lung disease people were dying of covid-19, right?

7. Alzheimer’s: 133,182
This seems to belie me putting renal failure due to anorexia due to Alzheimer’s. I think they actually read the forms and would put that as Alzheimer’s rather than renal failure, because it is not chronic renal disease.

8. Diabetes: 101,106
This rose too. 15.4%, again, probably partly because people avoided going to clinic visits. Also perhaps some stress eating. Carbohydrate comfort.

9. Influenza and pneumonia: 53,495
So this went up too in spite of a lot less influenza. Other pneumonias, presumably.

10. Kidney disease: 52,260
This went up.

And what fell out of the top ten, to be replaced by covid-19?

11. Suicide: 44,834
This actually went down a little. What will it do in 2021?

So what will 2021 look like? I don’t know. It depends what the variants of covid-19 do, depends on what sort of influenza year we have, depends on whether we are open or closed, depends if we bloody well help the rest of the world get vaccinated so that there is not a huge continuing wave of variants.

Today the Johns Hopkins covid-19 map says that deaths in the US stand at 608,818 from covid-19. If we subtract the 2020 covid-19 deaths, we stand at 263,495 deaths from covid-19 so far this year. Will we have more deaths in the US from covid-19 than in 2020? It is looking like yes, unless more people get immunized fast.

Take care.

The Introverted Thinker deals with death

When my introverted thinker daughter was two and a half, we took care of her maternal grandmother at home in hospice for nearly six weeks. Her maternal grandmother died at home.

Two and a half year olds can’t process death, right?

When she was four she came to me.
“How old was grandmother when she died?”
“She was sixty-one years old.” I could anticipate the next question.
“How old are you?”
“I am forty-one.”
“When will you die?”
“I don’t know. No one knows. But, great grandmother K lived until she was 93 so I am hoping to be more like her than like grandmother H, but I don’t know. I don’t think I am going to die any time soon.”
She studied me very carefully. It felt like she was checking to be sure that I was telling her the truth, the whole truth, and nothing but the truth. Apparently she was satisfied, because she toddled off to do something else.

And that is how the introverted thinker processed death.

Free fall

I feel safest with the fallen

Everyone falls
No one is good

I am afraid
Of the people who
pretend to be good

the fallen
don’t pretend

We fell down down down
like an eternity
like it would never end

We were bad
depressed drunk addicted
liars cowards thieves

We held our arms out
There was nothing to stop us
Free fall

All we could do
was pray

We prayed
As best we could
With all our hearts
If we had no words

Falling angels
Caught us

Helped us
Claw our way back

Some people fall
Are still falling
Fall forever

Are they crazy
Or do they choose
To stay with the angels?

The people who say
They are good

We look at them

We know they haven’t fallen

They are lying to us
They are lying to themselves
They are lying to the Beloved
They want to be good
They want what they say to be true

But it isn’t

I meet the eyes of another fallen
Knowledge

I can see the memory
Of infinite free fall
In their eyes.

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.

more grief and loss

Well, that’s the way it is.

The picture is from Lake Matinenda in Ontario.