Let’s see, I am thinking of famous people, not just that I’ve seen (from a distance) but that I know or knew:
Frankie Manning, one of Whitey’s Lindyhoppers who danced lindyhop at the Savoy Ballroom in Harlem in the 1920s and 1930s. He came to teach at the Savoy Swings Again dance weekends in West Virginia in the 1980s. He came to Port Townsend, too, for the dance camps here. I got to dance with him years ago and took classes and watched demonstrations. Hooray for him!
Bernice Reagon Johnson PhD, both for being an historian at the Smithsonian and for being the leader of Sweet Honey in the Rock for 40 years, and it’s still going! Ok, I don’t know her, but she is from my Washington, DC stomping grounds and I love that group.
Darryl Davis, for being an African American man who made appointments with KKK Grand Dragons to talk to them to try to understand. And some have quit! And he’s a fabulous Baltimore blues man and he and his band played at our wedding in 1989. He ran the Centrum Blues Fest for years too.
After my fourth pneumonia, I couldn’t stand the chest strap any more. Chest strap? say the guys. “What chest strap?” Dudes, bra, brassiere, whatever you want to call it.
It made my lungs hurt. My lungs already hurt. I thought, ok. I am 60 years old. I am “small” and don’t need any “support” unless I go running or something that really makes breasts jiggle. Don’t need a bra for dancing. And anyone who stares at my tits, well, gosh, thought you guys didn’t like “old” ladies. I don’t care.
Let’s think about that chest strap though. Guys, have you ever tried a bra on? What exactly is a bra for? Well, running or soccer or pole vault or football or all sorts of other heavy athletics, yeah, it can be really uncomfortable. Strap those babies down. But the day to day bra is to enhance support, stop jiggle and hide nipple action.
Uh, and meanwhile guys can take off their shirts in public. I think this is unfair. They have nipples too and breast tissue, just less.
Also, what is wrong with jiggle? The breast tissue drains in multiple directions, through lymphatics. I think some breast jiggle may be important to that drainage. Jiggle means slut to guys? Well, go suck a lemon, guys. And if you really stare at my breasts when I am talking to you, I might not sock your eye, but I sure as hell will lose all respect for you. All. And why are nipples evil in women but not in men? Because they are functional in women and men are jealous? Tit envy.
Now support. Yes, there are women who are so well endowed that they have back pain and may choose a breast reduction. This is covered by insurance if the clinician documents that pain over time. And breasts do change with time and age. But when is our culture going to accept and even celebrate aging! We do congratulate people turning 80 or 90 or 100, but otherwise older women are often ignored. I am delighted by the older actresses and musicians who are now finding parts and are still out there and dancing. Go Tina Turner, the legs go last!
I also think the chest strap is not nice for the lungs. Certainly not after four rounds of pneumonia, but bras have to be tight enough that they do have an effect on a deep breath. I’ve retired my bras. Ok, if I am in a Madonna mood and want to wear a lace see through white shirt, then I might pull out the scarlet one for the evening, but otherwise, no way. How good are bras for people with asthma, with emphysema, with post covid?
Lose that chest strap, ladies, and take a deep breath. Breathe free.
When is it evil to be quiet? When you are witnessing bullying or injustice or someone being harmed. Have you witnessed bullying and stood by and does it bother you?
I am at a dinner, invited. It turns out that the agenda is to talk a partner into staying, because she has quit. Partner one wants partner two to stay. Partner three and I are horrified and don’t want her to stay, but we do not want to say that to her. We frankly can’t wait for her to leave.
The dinner turns in to partner one and two bullying partner three. I am the newest and don’t know what to do. The next day I am ashamed and think, why didn’t I take partner three and leave? What is the matter with me?
Part of it is that I revert to childhood. I survived a complex household with people who were loving sometimes and horrid and drunk at others. Clamming up and being quiet was how I survived. But I am an adult now and I can leave. I can also speak up and say, “Stop. This is not fair. This is an ambush.”
Today’s watercolor is flowers. My mother loved flowers, had a wild and delightful garden, and painted them often. This is a small watercolor, 7 by 10 inches, no date.
I am thinking about the latest shootings. Aren’t we supposed to welcome strangers, for they may be angels in disguise? What did you stock up on during the pandemic? A gun didn’t occur to me. I bought more water filters and wished I could buy for the whole county. I bought seeds. I bought rice and beans. You can’t eat bullets and they aren’t good toilet paper either. I studied local edible plants. What did you buy? So many people are so afraid.
For the Ragtag Daily Prompt: nothing. Nothing to see here, folks, move along.
If you get sick
with something the doctors don’t understand
you will be labeled
unstable
mental
bipolar
crazy.
They will try to drug you.
How do you tell
when they are right
and you are crazy
brain on fire
and when you aren’t?
Don’t ask me.
I’m a Family Practice doc
and I’m rural
and I’m a girl.
I’m the one they make fun of in the medical schools. “The rural doctor transferred this patient.”
Yes we did.
Because we knew it was something
different
that needed more
than we had
in our small town
in our small hospital.
Once a neurosurgeon says,
“You are transferring the patient
because it’s Friday
and you don’t want to work
on the weekend.”
“She needs an MRI,” I say
“and we don’t have one.”
and transfer her anyway.
I call two days later.
After the MRI, she is in
the operating room
for a tumor in her spine.
He doesn’t call me back
but I hope he remembers.
I certainly do, after years
and years.
If you get sick with something the doctors don’t understand you will be labeled unstable mental bipolar crazy.
I have been thinking in a desultory manner or perhaps not really thinking about the A to Z April Challenge. I want to have a whole month of my mother’s fabulous art, but what is my theme? Mothers? No. Women artists? No. Discrimination against women artists? Sigh, no. Oh! I read an article yesterday about how the negative and nasty headlines get the major clicks. Today I read another very nice kind blog post about putting something nice into the world. So that gives me my theme! My mother’s art and daily evil impulses.
Impulses, not actions. Don’t we all feel those nasty impulses? Now I am interested in my own theme: how does that tie into my mother’s art? You don’t know? I don’t know either, but I know that many of us have complex feelings about our mothers. You might too. What does her art reveal or what does it trigger in me? And you get to enjoy her art, while you react with prim or gleeful horror at the Daily Evil Art Impulse.
Happy April!
______________
The first photograph is of one of Helen Burling Ottaway’s watercolors. It is signed, matted and shrink wrapped. Date: 1996. She died of cancer in 2000. I do not know the title, but this is Lake Matinenda, in Ontario, Canada. My maternal family has land there and I have gone there since age 5 months.
I was looking for a song with imprecation. I did not find one, but there is an infernal Texas horde (aka a band) named Imprecation. The band’s new album, Damnatio Ad Bestias will be the first since 2013’s Satanae Tenebris. Here:
I did listen to a little. Maybe Elwha or Sol Duc is into infernal Texas death metal. Now, is Sol Duc begging me to keep it on or turn it off in the photograph?
I was pricing health insurance in case I get well enough to work more. I can get an $800 a month with a $8000 deductible or a $1435 a month with a $2000 deductible. I would very much like to work part time treating Long Covid. But, ironically enough, looks like I can’t afford health insurance. It costs more than the malpractice would. Ironic, huh? It’s not like we need doctors. (I do not have a medical release yet anyhow, but time to do research. It’s making me gloomy.)
You know, if we do get Artificial Intelligence, it will take one look at the United States Medical non-system, decide we are insane, and wipe us out.
And honestly, when I was working for the hospital clinics, I thought the most brilliant person in our office was the woman who could extract a prior authorization from so many insurance companies. I would send the referral to print and half the time she would have it authorized by the time the patient got to the front desk. And why do we waste all that brilliance on giving health insurance companies a profit of 20 cents out of every dollar? That is $20,000,000 out of $100,000,000. Looks worse with bigger numbers, doesn’t it?
I am watching a four part video from the UK about illness and trauma.
The first part is about how trauma memories are stored differently from regular memories. Regular memories are stored in files, like stories in a book or a library.
Trauma memories are stored in the amygdala and often are disjointed and broken up and have all of the sensory input from the worst parts, including the emotions.
The therapist is talking about healing: that our tendency is to turn away from the trauma, smooth it over and try to ignore it.
However, the amygdala will not allow this. It will keep bringing the trauma up. And that is actually its’ job, to try to warn and protect us from danger!
The therapist counsels finding a safe time and place and safe person (if you have one) and then making space for the trauma to come back up. One approach is to write out the story, going through that most traumatic part, but not stopping there. What happened next? Writing the story and then putting it aside. Writing it again the next day and doing this for four days. As the story is rewritten and has an ending, even if it is not a happy ending, the story is eventually moved from the amygdala to the regular files. People can and do heal. They may need a lot of time and help, but they can heal.
I am not saying that four days of writing stories is enough. That is one approach, but nothing works for everyone and people need different sorts of help. There are all sorts of paths to healing.
In my Family Practice clinic I would see people in distress. With some gentle prompting and offering space, they would tell me about trauma and things happening in their personal life or work life. Things that were feeling so overwhelming that they could not tell their families or friends and they just could not seem to process the feelings about it. I would keep asking what was happening and give them the space to tell the story. Many times when they reached the present they would stop. There would be a silence. Then I would say, “It seems perfectly reasonable that you feel terrible, frightened, horrified, grieved, whatever they were feeling, with that going on.” And there was often a moment where the person looked inwards, at the arc of the story, and they too felt that their feelings were reasonable.
I would offer a referral to a counselor. “Or you can come back. Do you want to come back and talk about it if you need to?”
Sometimes they would take the referral. Sometimes they would schedule to come back. But nearly half the time they would say, “Let me wait and see. I think I am ok. I will call if I need to. Let me see what happens.”
When a person goes through trauma, many people cut them off. They don’t want to hear about it. They say let it go. They may avoid you. You will find out who your true friends are, who can stand by you when you are suffering. I have trouble when someone tries to show up in my life and wants to just pretend that nothing happened. “Let’s just start from now and go forward.” A family member said that to me recently. Um, no. You do not get to pretend nothing happened or say, “I wanted to stay out of it.” and now show back up. No. No. You are not my friend and will not be. And I am completely unwilling to trade silence about my trauma for your false friendship.
Yet rather than anger, I feel grief and pity. Because this family member can’t process his own trauma and therefore can’t be present for mine. Stunted growth.
People can heal but they need help and they need to choose to do the work of healing.
This song is a darkly funny illustration: she may be trying to process past trauma, but the narrator doesn’t want anything to do with it. And he may not have the capacity to handle it. He may have his own issues that he has not dealt with. And maybe they both need professionals.
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.
______________________________
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?
Discover and re-discover Mexicoβs cuisine, culture and history through the recipes, backyard stories and other interesting findings of an expatriate in Canada
Engaging in some lyrical athletics whilst painting pictures with words and pounding the pavement. I run; blog; write poetry; chase after my kids & drink coffee.
Refugees welcome - FlΓΌchtlinge willkommen I am teaching German to refugees. Ich unterrichte geflΓΌchtete Menschen in der deutschen Sprache. I am writing this blog in English and German because my friends speak English and German. Ich schreibe auf Deutsch und Englisch, weil meine Freunde Deutsch und Englisch sprechen.
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