Category Archives: abandoned

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Adverse Childhood Experiences 13: unsense

As a child in an alcoholic/addict household where you can not trust adults, who do you trust?

You either trust yourself or you buy in the alcohol story.

If you buy in, you have a high probability of either becoming an addict or marrying one, depending if you prefer the enabler or the enablee role.

If you trust yourself, you develop certain senses. You pay attention to people’s emotions. You pay attention to what people FEEL, what people DO and not what people SAY. You do not care what they say: what matters is what they do. My sister said she used to walk my parent’s house during high school and try to feel the mood. Did she need to hide?

The enabler role is trying to control the other person. There are amazing variations on this. I cared for a person whose sister would not take care of herself. Every time the sister is hospitalized, the person goes and cleans tons of garbage and rotted food from the apartment.

“Stop doing that,” I say, “You are enabling her. Call Adult Protective Services to go look at it instead.”

It can be very difficult to stop and can take years. People can change.

I have noticed that the enabler role is lethal. The enablers seem to die before the enablee. Certainly in my immediate family and with many patients too.

Enablee is the person controlled. Alcohol, drugs, gambling, anger, emotions. It is very very interesting to watch. I have read parts of my mother’s diaries. She was the enabler, with my father as the enablee. However, the diaries document them fighting in the middle of the night when he is drunk. And I remember high school, putting the pillow over my ears, because they were screaming at each other.

But wait. Why would she argue with her drunk husband? Why would anyone argue with a drunk person? You have to wait until they are sober.

And slowly I realize that my mother too was an alcoholic. I remember her drinking. Best cover for an alcoholic is a worse alcoholic, right? It’s fairly horrid. But it explains some stories and my food insecurity. They would not get up in the morning to feed me. My mother told stories of me trying to feed myself: cheerios and laundry soap. If my father was hung over, ok, but, why wouldn’t my mother get up? I think they were both hung over. That or else she really did not want a child. Especially a nine month old with opinions while she was trying to get over tuberculosis. She never got to hold me after birth until 9 months. And then I did not want her. I wanted her mother.

Trusting yourself, life can be a bit complicated. You sense the emotions others are hiding. Being a physician allows me to ask about the hidden things, very gently. Sometimes they come out right away. Sometimes it takes months. Sometimes years and sometimes never. My sister and I discussed going to parties and thinking, oh, that person is the child of an addict/alcoholic. This person is in pain. This person is quite happy but hiding stuff.

I told a counselor I do not know how to turn it off. She replies, “Why do you think I am a counselor?”

I don’t see auras. I feel things: like a cloud. Like a tiger, like a bear, like a whale, singing.

I think I will go with the whale.

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Hurricane Ridge

This is my mother’s biggest watercolor painting. I have it hanging in my guest room. It is huge and gorgeous, nearly the width of the double bed.

I miss her. Helen Burling Ottaway. I will put more of her artwork up. She died in 2000, but I still have the art.

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Covid-19: aftermath

I am thinking about the roaring twenties a lot. I think people went a little nuts, not because of the war, but because they had difficulty being emotionally honest about the influenza pandemic. I think we humans will do it again to forget the deaths, to go into denial, to refuse to grieve.

Yes, that is my prediction.

Be very quiet, I am hunting wabbits.

Be careful in our future roaring twenties. Money will flow like honey and people will go nuts. Hold fast, hunker down, don’t go out without your macintosh, wear clean underwear. Remember what your mother told you, remember what your father tells you. Because that was followed by the Depression and that is one risk.

I don’t know if it will start this spring or next spring. Ok, I AM hoping that my son and future daughter-in-law can get married in early May, since they’ve put it off for two years. But. The 1918-19 influenza was really three years, not two. It tailed off. Half the people in the world got it. In Samoa, half the adults died, or was it 70%? They had little exposure to infection but a ship brought it. They KNEW they were high risk, but a sailor didn’t know he was sick yet.

Why a roaring twenties? Because we want to forget this pandemic, as the last one was forgotten. Our history books say that the Roaring Twenties was about the end of World War I. We teach lots about that. We barely mention the influenza world pandemic. I am reading a book about the 1918-19 influenza pandemic published in 2018. The author says that it is only now, 100 years later, that we are starting to really tell the stories of that pandemic. She gathers stories from all over the world, including stores of different infection control strategies in two cities. One guessed right and one guessed wrong, and in the wrong one, way more people died.

I read about that 1918-19 pandemic after influenza nearly killed me in 2003. I was 42, healthy, a physician, a mother, an athlete. I had NO risk factors except stress. Now it looks like it was a PANS reaction, but at the time, neither my doctor nor I could figure out why I was short of breath and tachycardic walking across a room for two months. Fatigue, chest pain, tachycardia, shortness of breath. Hmmm, what does that sound like? My partners thought I was faking and I was so sick that I could barely communicate. The stresses were my mother dying of ovarian cancer in May 2000 and my marriage being pretty on the rocks and me working way too hard. My psychiatrist said I should take time off. I said, I can’t. He said, you’d better. Then I got flu. “See?” he said. The body decides, not the conscious brain. He was correct, damn him.

The book I read in 2004 looked dry and medical from the outside. It had pages and pages of footnotes. It had photographs of Los Angeles. They knew the influenza was coming towards them like a wave and they tried to get ready. Bodies under sheets were stacked five deep in the hallways of the hospitals. It hit that fast. People, usually age 20-50, turned blue and fell over dead. WHY? It was the immune response. The 20-50 year olds had a better immune response than the 50 and older and their lungs would swell until there was no airspace left. Even then, that pandemic death rate was only 1-2 % in the US. But it was so fast and spread so quickly that everything was disrupted because it was the workers that were deathly ill and at home and there was no one to work.

People wore masks in public, except for the mask refusers, but not in their homes. So entire families would get ill. I don’t think they had figured out viral loads yet. If you are the last one standing, and you are trying to take care of a spouse and six children, you were high risk from viral load and exhaustion.

The Roaring Twenties WAS a way to grieve, it’s just a dysfunctional one. The stages of grief: denial, bargaining, anger, grief and acceptance. My sister said that acting out and revenge ought to be added as stages of grief. She died of breast cancer after fighting it for 8 years. Roaring is denial and bargaining and acting out and revenge, all at once. Everyone grieves differently, remember that. There is not an order to the stages of grief and you don’t do them once. You do them over and over and over.

I am a Cheerful Charlie, right?

War is one way to forget/deny/act out. Let’s not do that. Let’s not have a civil war of forgetfulness and denial.

Let us remember clearly and lean on each other.

Playing for change: lean on me

I think this fits the Ragtag Daily Prompt: inflammable.

My sister’s blog: https://e2grundoon.blogspot.com/2009/01/chemo-not-in-vain.html . She died on March 29, 2012. The start of the blog is here: https://e2grundoon.blogspot.com/2002/02/ .

Blessings.

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I got Cheerful Charlie from Pogo comics: read the Albert Alligator section. https://comicstrips.fandom.com/wiki/List_of_Pogo_characters
More recently, Downton Abby used Cheerful Charlie. https://downtonabbey.fandom.com/wiki/The_Cheerful_Charlies

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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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Why care for addicts?

I posted this in November, 2015. I am reposting it.

_________________

Why care for addicts?

Children. If we do addiction medicine and help and treat addicts, we are helping children and their parents and our elderly patients’ children. We are helping families, and that is why I chose Family Practice as my specialty.

Stop thinking of addiction as the evil person who chooses to buy drugs instead of paying their bills. Instead, think of it as a disease where the drug takes over. Essentially, we have trouble with addicts because they lie about using drugs. But I think of it as the drug takes over: when the addict is out of control, the drug has control. The drug is not just lying to the doctor, the spouse, the parents, the family, the police: the drug is lying to the patient too.

The drug says: just a little. You feel so sick. You will feel so much better. Just a tiny bit and you can stop then. No one will know. You are smart. You can do it. You have control. You can just use a tiny bit, just today and then you can stop. They say they are helping you, but they aren’t. Look how horrible you feel! And you need to get the shopping done and you can’t because you are so sick…. just a little. I won’t hurt you. I am your best friend.

I think of drug and alcohol addiction as a loss of boundaries and a loss of control. I treat opiate overuse patients and I explain: you are here to be treated because you have lost your boundaries with this drug. Therefore it is my job to help you rebuild those boundaries. We both know that if the drug takes control, it will lie. So I have to do urine drug tests and hold you to your appointments and refuse to alter MY boundaries to help keep you safe. If the drug is taking over, I will have you come for more frequent visits. You have to keep your part of the contract: going to AA, to NA, to your treatment group, giving urine specimens. These things rebuild your internal boundaries. Meanwhile you and I and drug treatment are the external boundaries. If that fails, I will offer to help you go to inpatient treatment. Some people refuse and go back to the drug. I feel sad but I hope that they will have another chance. Some people die from the drug and are lost.

Addiction is a family illness. The loved one is controlled by the drug and lies. The family WANTS to believe their loved one and often the family β€œenables” by helping the loved one cover up the illness. Telling the boss that the loved one is sick, procuring them alcohol or giving them their pills, telling the children and the grandparents that everything is ok. Everything is NOT ok and the children are frightened. One parent behaves horribly when they are high or drunk and the other parent is anxious, distracted, stressed and denies the problem. Or BOTH are using and imagine if you are a child in that. Terror and confusion.

Children from addiction homes are more likely to be addicts themselves or marry addicts. They have grown up in confusing lonely dysfunction and exactly how are they supposed to learn to act β€œnormally” or to heal themselves? The parents may have covered well enough that the community tells them how wonderful their father was or how charming their mother was at the funeral. What does the adult child say to that, if they have memories of terror and horror? The children learn to numb the feelings in order to survive the household and they learn to keep their mouths shut: it’s safer. It is very hard to unlearn as an adult.

I have people with opiate overuse syndrome who come to see me with their children. I have drawings by children that have a doctor and a nurse and the words β€œheroes” underneath and β€œthank you”. I  have had a young pregnant patient thank me for doing a urine drug screen as routine early in pregnancy. β€œMy friend used meth the whole pregnancy and they never checked,” she said, β€œNow her baby is messed up.”

Addiction medicine is complicated because we think people should tell the truth. But it is a disease precisely because it’s the loss of control and loss of boundaries that cause the lying. We should be angry at the drug, not the person: love the person and help them change their behavior. We need to stop stigmatizing and demeaning addiction and help people. For them, for their families, for their children and for ourselves.

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adaptive theory of PANS/PANDAS

This is my working theory on PANS/PANDAS. Pediatric autoimmune neuropsychiatric syndrome/Pediatric autoimmune neuropsychiatric disorders associated with Strep A.

Four or more antibodies. The antibodies can take different patterns in different people.

  1. Antibodies to dopamine 1 and dopamine 2 receptors.

The antibodies are like keys fitting in a lock. The key may fit in the lock and BLOCK or fit in the lock and OPEN IT. So, there are a very large number of patterns that could arise from this, especially when we remember the rat neuron with 300 different receptors for serotonin in one neuron. Think of the possibilities here.

If this antibody BLOCKS, an ANTAGONIST, it will cause slowing/brain fog/depression/and I don’t know what all.

If this antibody is an AGONIST and the key turns, it apparently can cause mania, ADHD, OCD, oppositional defiance, clinginess, separation anxiety, anxiety, etc.

We do not know what causes psychiatric disorders. Now we have a category called neuropsychiatric, where it is caused by an antibody. Or antibodies. What percentage of psychiatric disorders are caused by this? I am betting high rather than low.

  1. Antibodies to tubulin.

If the antibody is an ANTAGONIST, blocking, then slow or fast twitch muscles won’t function correctly. It could block both. I think if it blocks both, that is the severe lie in bed chronic fatigue. I have trouble with my fast twitch muscles but my slow twitch ones work just fine.

If the antibody is an AGONIST, you get some super athletes. I know a number of people that I would suspect fall into this category. I can name five off the top of my head, friends.

  1. Antibodies to lysoganglioside.

This one worries me. Lysogangliosides lyse ganglions. These antibodies are used in soap making, among other things. They break down fatty cell walls.

When I have a high antibody level, I have trouble eating any carbohydrates. As I improve, I have trouble mostly with sucrose, fructose and gluten but not lactose. Also, when I eat gluten, I get acidic. When you get acidic, your body tries to compensate by slowing your breathing to hold on to CO2, because you need to balance the acid H+ with a base, OH-. So: triple whammy. Acidic I automatically breathe slower, which is not helpful when I am already hypoxic and tachycardic.

I have not figured out whether my antibody is an agonist or antagonist.

An agonist would lyse more ganglions. This could be bad for the brain and for peripheral nerves. Neuropathy and dementia.

An antagonist would stop ganglion lysing. Um, in theory, cancer. Lysogangliosides are supposed to clear out bad cells.My guess is that I have an antagonist because of the family history. At least, on my mother’s and sister’s side. My father smoked two packs of Camels for 55 years and did not get cancer: tough bugger, right? Or did he have an Agonist? This line of thinking makes me very highly motivated to eat in whatever way the antibodies want me to. I do not understand why gluten would trigger this and why the gluten effect in me lasts longer than the fructose and sucrose effect. Gluten intolerance and other gut problems are on the rise and this would certainly explain that. This is the cause of at least some fibromyalgia patterns. Not only does eating gluten screw up my breathing, but it makes any muscle that I have used recently hurt like hell. I ate some meatballs without reading the stupid package back in April. Two hours of chest wall muscle pain and honestly, heart pain. I dug the package out and duh: bread crumbs. Gol dang it, I hate it when I am stupid. However, it hurts like hell but at it’s worst I had normal cardiac enzymes and no heart attack. Weird.

Ok, but WAIT, you said ADAPTIVE. How can this nightmare be adaptive?

Sure, adaptive. Remember the back up system for when we are starving? We switch from metabolizing glucose to metabolizing protein and fats, our own if necessary. We go from glycogen metabolism to protein/fat metabolism which produces ketones.

This is the crisis shit hits the fan emotionally and in plagues system.

So, can be caused by stress or infection or a combination.

Why why why?

Because if the stress gets too high or the infection gets too bad, our body switches gears and runs a back up system. I’ve thought of chronic fatigue as some sort of switch the body throws for years, because it’s the hypercrazy work too hard workaholic Type A people who get it. Type B people do not get it or don’t notice or don’t care. Type B people just say, wow, I’m tired, I think I will rest. The Type A people flip out and say “Put me back like I was!!!!” and then they go to 47 doctors and refuse to do anything the doctors say and do internet research and see any kind of quack you can imagine and they are the most exhausting patients.

Why the psychiatric stuff? Ok, take mania. If there is plague or you are in a really dangerous abusive situation, mania suddenly makes sense. Overnight you are different and what’s more, it scares the hell out of everyone. You are shunned. You are alone. You may get thrown out of a job, family, friend group or all of the above. This would tend to protect you against both plague and the really dangerous abusive situation. Whether you like it or not.

And how clever of the brain/body. Here is a back up system. It changes at least four systems, so you are now a different person. You freak your employer, friends and family out. AND you are sick as shit and they won’t listen. You have to get out and go elsewhere for help or hide in your castle or house or whatever. You can’t move or you have super muscles. And every single person has a different pattern.

I look at the long haul covid. The most common symptoms are psychiatric, shortness of breath and fatigue. Sound familiar?

Now, will someone PLEASE fund my NIH west?

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Guidelines for treating PANS/PANDAS: https://www.pandasppn.org/jcap2017/

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werewolf

Time out word warning, in this poem. This poem is about discrimination. Substitute practically anything for werewolf…. disabled, bipolar, depressed, autistic, substance abuser. I am sick of discrimination. For human, substitute “normal”.

You know I’ve been a werewolf my whole life

Started in the womb
triggered by antibodies
to tuberculosis

And I am tired

of people telling me

I’m a werewolf.

Ok? I fucking know that.
I have known it since Kindergarten
where I arrived full of joy
ready to sing

and was shunned

we didn’t have a television

but I knew that wasn’t really it
I was different
I am different

and fuck you humans
different is ok.

I am a werewolf
and I am fucking proud
of all I have accomplished
in the teeth of humans hating me
and trying to shut me down
and shunning me
and reporting me
and doing everything short of shooting me
with real guns

I’ve been told to sit down
shut up
stop arguing
be nice
be good
go away
die
don’t read my writeups
don’t C! my work
don’t talk to me
stop making waves
been fired
been reported
been shunned
been alone

and fuck you humans

get ready
because I am middle aged now
for a werewolf
and I am ready

to be one all the timee

damn the torpedoes
full speed ahead
fuck you humans
for how you’ve treated me

I’ve turned the other cheek
for sixty years

and now
I
will
fight

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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

β€œEverything2 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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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