Negotiating peace

I spend a long day wrestling with love
arguing with myself back and forth
I am no angel descended from above
Those undeserving of my love make me wroth
yet my core argues that it still loves them
and agrees their cruelty’s beyond the pale
I snarl and cough and choke on bitter phlegm
Defend my self staying far away and hale
My core agrees I shall not tolerate abuse
Forgive yet we despair we’ll ever reconcile
They show no guilt nor shame for their misuse
My core says let them be: she is so mild
Negotiation done: Agreed. I may love those who I love
But I leave contact with them to the angels and Beloved.

_____________________

Sonnet 10

Medicare Disadvantage

Medicare Advantage plans, from for profit insurance companies, are being rebranded Medicare Reach.

They seem like a good deal. They are if you are healthy forever! So what is the catch?

In Michigan I go to look at a nursing home with a friend. The administrator shows us around. Small rooms with two beds. We also look at an assisted living. Much larger rooms, the friend can stay overnight in the private room with the parent, at a cost of $4000.00 per month. Her insurance will not cover it.

But back to the nursing home. The administrator tells us that it’s good that her parent does NOT have a medicare advantage or medicare reach plan. “It is nearly impossible to get the insurance companies to approve a rehabilitation stay at a nursing home.”

“Really?” I say.

“Oh, really.” She says. “The insurance companies certainly don’t want you to know that when you buy their “deal”.”

So, the for profit insurance companies want you if you are of medicare age and are well. BUT the catch is that they really don’t want to cover if you are sick. Think carefully before you buy a pig in a poke!

Physicians for a National Healthcare Program is working to stop the insurance companies from skimming profit off the healthier elders and then abandoning them when they are not healthy. I wish that the United States citizens would clue in, get mad, and vote for single payer! Write your congresspeople and put pressure on them! They listen to money but in the end, they live by votes. Make sure you look at the fine print, because the insurance company is there to make a profit off you, not preserve your health.

The picture is Mordechai, our plastic clinic skeleton, distrusting Profit-Over-Health Insurance Companies.

Tubulin and antibodies

This is very science dense because I wrote it for a group of physicians. I keep thinking that physicians are scientists and full of insatiable curiosity but my own experience with to date 25 specialists since 2012 would say that many are not curious at all. This continues to surprise and sadden me.

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All science starts with theories. Mothers of children with PANS/PANDAS reactions had to fight to get the medical community to believe that their children had changed after an infection and that symptoms of Obsessive Compulsive disorder and all the other symptoms were new and unexpected and severe. This is a discussion of tubulin and how antibodies work, theorizing based on my own adult experience of PANS. I was diagnosed by a psychiatrist in 2012. No specialist since has agreed yet no specialist has come up with an “overaching diagnosis” to explain recurrent pneumonia with multiple other confusing symptoms.

The current guidelines for treating PANS/PANDAS are here: https://www.liebertpub.com/doi/full/10.1089/cap.2016.0148. This section discusses four antibodies that are a common thread in PANS/PANDAS patients. Antibodies to dopamine 1 receptors, dopamine 2 receptors, tubulin and lysoganglioside.

Per wikipedia “Tubulin in molecular biology can refer either to the tubulin protein superfamily of globular proteins, or one of the member proteins of that superfamily.” Tubulin is essential in cell division and also makes up the proteins that allow movement of cilia, flagella and muscles in the human body. There are six members of the tubulin superfamily, so there are multiple kinds.

Antibodies are complicated. Each person makes different antibodies, and the antibodies can attach to a different part of a protein. For example, there is more than one vaccine for the Covid-19 virus, attaching to different parts of the virus and alerting the body to the presence of an infection. Viruses are too small to see yet have multiple surface sites that can be targets for a vaccine. When a cell or a virus is coated with antibodies, other immune cells get the signal to attack and kill cells. At times the body makes antibodies that attach to healthy cells, and this can cause autoimmune disease.

Antibodies also can act like a key. They can block a receptor or “turn it on”. Blockade is called an antagonist when a pharmaceutical blocks a receptor and “turning it on” is called an agonist. As an example of how an agonist and antagonist work, take the pharmaceutical buprenorphine. Buprenorphine is a dual agonist/antagonist drug. In low doses it works as an agonist at opioid receptors. At high doses it is an antagonist and blocks the receptors. It also has strong receptor affinity. This means that it will replace almost all other opioids at the receptor: oxycodone, hydrocodone, morphine, heroin. The blockage and ceiling dose make it an excellent choice for opioid overuse. Higher doses do not give a high nor cause overdose and when a person is on buprenorphine, other opioids do not displace the buprenorphine and give no effect.

Similarly, a tubulin antibody could be an agonist or an antagonist or both. As an agonist, it would block function. My version of PANS comes with a weird version of chronic fatigue. When I am affected, my fast twitch muscles do not work right and I instantly get short of breath and tachycardic. I suspect that my lung cilia are also affected, because that would explain the recurrent pneumonias. My slow twitch muscles are fine. With this fourth round of pneumonia I needed oxygen for over a year, but with oxygen my slow twitch muscles do fine. We have fast twitch fatiguable muscles, fast twitch non-fatiguable, and slow twitch. With six families of tubulin and multiple subfamilies and every person making different antibodies, it is no wonder that each person’s symptoms are highly variable.

Currently the testing for the four antibodies is experimental. It is not used for diagnosis. When I had pneumonia in 2012 and 2014, the antibodies had not yet been described. There is now a laboratory in New York State that will test for them but insurance will not cover the test, it costs $1000 as of last year, and it is not definitive nor useful yet anyhow.

There are studies going on of antibodies in ME-CFS, fibromyalgia, chronic lyme disease, PANS/PANDAS and Long Covid. Recently antibodies from humans with fibromyalgia were injected into mice. The antibodies caused fibromyalgia symptoms in the mice: https://www.sciencedaily.com/releases/2021/07/210701120703.htm. One of the barriers to diagnosis and treatment of fibromyalgia is that science has not found a marker in common that we can test for. Even the two inflammatory markers that we use (C-reactive protein and Erythrocyte Sedimentaion rate) are negative in fibromyalgia. This doesn’t mean that people do not have pain or that it is not real, it just means we have not found the markers. It may be that the markers are diverse antibodies and there is not a single marker.

The research is fascinating and gives me hope. It boggles the mind, doesn’t it?

For the Ragtag Daily Prompt boggle.

Qia and the dark

This story is part of a series about a Balint group for angels. Balint groups are groups for physicians to get together and talk about cases that bother them. This often means facing their own biases and discriminatory feelings. I wrote this in January 2022. The current estimate of Long Covid is 10 to 30% of non hospitalized people. Which is huge and terrifying.

___________________________

“And really, it looks like at least half the population will get Omicron. The question,” says Qia, “is how much Long Haul it causes. If it causes 30-50%, like Delta, we are in serious trouble.”

The angels are silent.

“Do you think it will?”

“I am hoping for under 10%.” says Qia. “But of course I do not know.”

Silence again.

“Why do you go to WORST CASE?” snaps Algernon. His wings rustle.

Qia blinks at him slowly.

She thinks about it. “It is the safest place to start.”

Algernon frowns at her. Another angel slowly nods.

“If I start in the worst case scenario, I can face it. I have to think about it, work through it, plan for it. Then I can back off and hope for one of the less horrific scenarios.”

“You are WEIRD.” says Algernon.

Qia is annoyed. Her wings go bat and blood red.

“Word.” whispers a very young angel.

“WHY?” snaps Qia, “WHY NOT face the worst?”

“Most people never do,” says the moderator.

“What?” says Qia.

“Most people never face the worst. They don’t want to. They are terrified. They are scared. They do things to avoid thinking about it. They skip that step and just go straight to hope.”

Qia glares at her. The moderator smiles and her wings go black as pitch.

“We aren’t PEOPLE. We are ANGELS.” says Qia, nearly snarling.

Algernon laughs. “Yeah, well, some of us do not want to think about the worst either. That is Gawd(esses) job.”

Qia is doubly pissed off to be crying. “No, we have to think too.”

“Qia, I agree, but it is hard.” says the moderator. “That is why you have the job you have. Because you are willing to go straight to the dark.”

Qia has her face in her hands.

The angels surround her, soothing, and start to sing.

down

I’ve let myself come down again

it’s not really quiet down here
whales
the earth shuddering
new mountains being born
the ebb and flow
as the earth makes love to the moon
and small bubbles

I am quiet
when I let myself
go all the way down

the ocean is not quiet, but it is dark
dark as a dungeon
damper than dew
I keep sinking

and my eyes slowly adjust
my lungs adjust too
it hurts like knives at first
but I adjust faster than i used to
like the sea lions
I can go down and get back up
no bends
I have learned from them
I hold the oxygen
and let the nitrogen out slowly
through my gut

my eyes adjust
and then they come
the glowing ones, slow and fast
like ghosts swimming towards me
maybe they are my dead
someday I will join them

I expect to return this time
maybe
or not
I don’t know if I will find pearls
or a leviathan
who will swallow me whole
and barely notice

this time I walked in
myself
I don’t blame you
or family or past or circumstances
it is time for me to go down
I go
down and down and down
deep

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Why I hate insurance companies: 1

I had cobra from my job in 2009 and the insurance company refused my bills. Not one bill. Not once. EVERY BILL EVERY TIME: 1. my healthcare 2. my son’s healthcare 3. my daughter’s healthcare 4. my daughter’s orthodontia 5. my dentist 6. my son’s dentist. I had to call EVERY TIME to get them to pay. Calling an insurance company takes 25 or 30 minutes, right? Eventually I asked for customer service who first said it was my fault because “you probably paid the bill late”. I said, “No, I was on time every month.” Then customer service wouldn’t call me back. I finally called their COUNSELING HOTLINE, since it said I would be “paid” $30 to get counseled, and said, “MY LITTLE SISTER IS DYING OF BREAST CANCER AND THE THING THAT IS MOST STRESSING ME OUT IS YOUR INSURANCE COMPANY WON’T PAY THE COBRA BILLS AND I HAVE CALLED CUSTOMER SERVICE OVER AND OVER AND THEY WON’T CALL ME BACK. HOW ABOUT YOU COUNSEL ME HOW TO DEAL WITH THAT!” And I cried. I got a call back from the head of customer service saying “Oh, it’s a computer glitch and we had you misfiled. We have fixed it.” They “misfile” people all the time, or drop patients if they get sick, or say the person didn’t pay on time. I HATE INSURANCE COMPANIES. Anyhow, be warned that insurance companies are there to earn money and will try to avoid paying you in all sorts of ways, including ways that are illegal.

We need single payer healthcare, medicare for all. If we all have healthcare, think of how many small businesses would start up. And why don’t we have single payer healthcare? I think the big corporations don’t want it.

Physicians for a National Healthcare Program: https://pnhp.org/

Medicare for all: https://medicare4all.org/

And my dear friends not on the road any more: http://madashelldoctors.com/

Who is the man in the photograph? I don’t know. This is an old tintype. They came from my Great Aunt, Esther White Parr, married to Russel Parr. Perhaps they are Parrs, because my Uncle Rob did not know any of the people in the four tintypes I have. My sister and I used them for portraits in our china doll houses. I hope he is not the CEO of an insurance corporation, but then, all the white collar white men tried to dress that way then.

Adverse Childhood Experiences 13: on gratitude

I saw a meme today about gratitude. It is saying that some people look at a garden and see thorns and weeds, but others see the roses. That we need to have gratitude. I think this is simplistic and papers over the trauma and grief that some people have. If they have endured a highly traumatic childhood, who am I to say they should focus on the roses? They may have a very good reason to see if there is something like a thorn that can hurt them before enjoying the roses.

I work with many patients with high Adverse Childhood Experience scores and mine is high too. I don’t tell my patients that they should have gratitude. I tell them “You survived your childhood. You have crisis wiring. Good for you. Some of your learned crisis survival wiring may not serve you as well now as it did when you were a child.” Then we discuss whether they want to work on any aspects and the many many different approaches. One example: a man who sleeps very lightly. He said that it was lifelong. When asked about his childhood he says, “We would have to leave in the night when there was shooting in my neighborhood. It was a very dangerous area.” I said, “I am not surprised you sleep lightly. You HAD to in childhood to survive. Is this something you want to try and change?” He thought about it and decided, no. Once it was framed as learned in childhood to survive, he stopped worrying about “normal”. He was satisfied that the way he slept was “normal” for him and he wanted to wake up if he heard shooting.

I think we have to ask why a person sees thorns and weeds in a garden before we judge them. My first thought with a new and angry or hostile patient is always, oh, they have been badly hurt in the past. What happened? I don’t worry that the anger is at me. I know it’s not at me, it’s at the system or a past physician or a past event. Under the anger there are other emotions, usually fear or humiliation or grief. I have brought up Adverse Childhood Experience scores on the first visit sometimes. One person replies, “I am a 10 out of 10.” The score only goes up to 8 but I agree. He was a 10. He stated once, “The military loved me because I could go from zero to 60 in one minute.” Very very defensive and very quick to respond. The response may seem extreme and inappropriate to other people: but it may feel like the only safe way to be to my patient.

I grew up hiding any grief or fear in my family, under anger, because grief or fear would be made into a story told for laughs. In college, a boyfriend told me I was an ogre when I was angry. I started working on it then and it was difficult to tame that. The person who took the longest was my sister: she could make me explode until I was in my residency. Medical training was excellent for learning emotional control, at least, on the surface. After my mother died, I had to do the next piece of emotional work: open the Pandora’s Box of stuffed emotions, mostly fear and grief, and let them out. It was such hard work that my day where I saw the counselor for an hour was harder than my ten hour clinic day. I did the work, for two long years. Blessings on the counselors who stood by me while I worked through it.

I do not think we are ever done with that sort of work. I think, what do I need to learn next? What is this friend teaching me? Why is this behavior frustrating me and I have to look in my inner mirror. Why, why, why?

Blessing on your healing path and may you not be judged.

Link about ACE scores: https://www.cdc.gov/violenceprevention/aces/about.html

Sometimes I do feel like a fossil, now that I am middle aged. For the Ragtag Daily Prompt: fossil.

too lips?

Grief and anger over shootings.

Stages of grief and Stages of peace. How do we reach and help the people who feel the urge to kill? How do we grieve the children? How do we peace the world?

For Cee’s Flower of the Day. These are from my CSA box, my weekly box from Red Dog Farm.

Caduceus Hair

A physician says to me, “You might have had more friends and been more successful in your career if you had been put on medication a long time ago.”

I think, “You f—ing bitch.” Nothing shows on my face. The doctor face is pleasant on the surface and the stone face that guards my feelings is deeper. I could show you the snakes and you would turn to stone but I would go to jail.

Your words don’t go away. They fester, a deep deep wound. I ask my other doctor, “If my only symptom of pneumonia is my mood, no white count, no fever, how would I know if I had pneumonia if I were medicated?”

I think back. Age twenty five with belly pain, emergency room, CT scan and then a sigmoidoscopy. I couldn’t eat, it hurt so bad. The emergency room offers me valium. “No,” I say, “my father is an alcoholic. I won’t take that.” I am sent to counseling. The counselor, smug, blonde, polished, wants to send me to her husband, a psychiatrist, for drugs. “No,” I say, “my father is an alcoholic. I want talk therapy not drugs.” I am very very afraid.

Things get better.  I tell the counselor thank you. “You can’t stop now,” she says, “You must continue the counseling. Or you will have problems later on.” I go once more. She says I must keep coming. I speak to a family friend, a PhD psychologist, who encourages me to say no. I cancel. No regrets.

I am not an alcoholic. I don’t smoke. I don’t use pot nor CBD. I never tried cocaine or meth or opioids or crack. I can tell an addict by their charm: the sick people are not charming nor the people in for maintenance. The moment a person tries to charm me I wonder what they want.

The physician is wrong and cruel besides. Valium is addictive and is still overused. I could have taken the path of psychiatric medicine but I chose not to.

I will find another doctor who is less stupid and cruel. They do exist. I know, because I am one.

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