Tag Archives: music

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Working theory

I attended two Zoom one hour programs on Long Covid this week.

Thursday from the University of Arizona, 330 people logged on, hard science with thirty minutes of information about Mast Cell Activation Syndrome. They said 17% of the population, which is huge, if it’s correct. This is not mastocytosis, the cancer. This is the immune system going rather batshit. Though I would frame it differently, as the immune system fighting a really difficult battle.

Friday from the University of Washington. I don’t know how many were logged on. This was at a much more aimed right at the physicians level. People sent in questions and they collated and gave answers. They promised to answer some of the questions later on. My question was whether a high Adverse Childhood Experience Score predisposed to Mast Cell Activation and they did not address that.

So mast cells apparently can produce over 1000 different signals: cytokines, histamines, proteases and I don’t know what all. They are all over our bodies (are you creeped out? I am a little.) near the boundaries: skin, nose, gastrointestinal tract, genitals. They produce different signals depending on what is happening. The Thursday researcher basically said that they could affect nearly any system in the body.

I’ve heard of mastocytosis and even had a patient with it, but Mast Cell Activation Syndrome was barely on my radar. I am not sure if 17% of the population is at risk or has it. It is tricky to diagnose, because the best lab test is a rather tricky and rare one, and it is sort of an orphan illness: few doctors know about it and it does not fit neatly into any specialties. Patients have seen an average of ten specialists before they get diagnosed. Hmmm. Sounds familiar.

This researcher has a ton of papers out, that I have not started reading yet. MCAS is implicated in Ehlers-Danlos, a connective tissue disease and in ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) as well as POTS (postural orthostatic tachycardia syndrome) and can get triggered by Covid-19. Well.

The good thing is that treatment is quieting the sympathetic nervous system to let the parasympathetic take over. The sympathetic is the fight or flight hyper one. Parasympathetic is the rest, relax, mellow out, slow heart rate, blood pressure down, digestion and quiet one. I think United States culture is crazy fight or flight most of the time (We’re number one!– so what?) and the pandemic has put the whole world into fight or flight mode. Crazy.

Back in Family Medicine residency, 1993-96, I had a number of ME/CFS, chronic fatigue patients. They tended to be hyper sensitive to medicines and have all sorts of symptoms which were fluid and changable and difficult to pin down. What I noticed though is that many of them had been super high acheivers or working multiple jobs or crazy high stress, until they hit some sort of wall. Often an infection but not always. The ones I saw wanted to go back to working 18 hours a day. I said, “Um, that’s how you got this, I do not think that is a good goal.” This often pissed people off. Even back then, I thought that chronic fatigue was a body reset, where the body rebels, some sort of switch is thrown, and people rest whether they want to or not. Some do recover but it can take ages. The Thursday speaker seems to think it’s the mast cells doing this.

The UW speakers were careful. They said we do not know how long Long Covid lasts. One said they do not like to diagnose POTS, because POTS is usually permanent and the Long Covid tachycardia usually resolves. They are seeing people who got sick 2-3 years ago and are still sick, but they also have people who have recovered in 9-12 months. They do not know if patients are entirely recovered or whether there will be other problems later. They also aren’t sure that the chronic fatigue like symptoms are the same as the rest of the ME/CFS. Remember when dementia was Alzheimer’s? Now there are all sorts of different dementia diagnoses, Lewy body, frontotemporal, Huntington’s, stroke dementia, alcoholic dementia, Parkinson’s, Alzheimer’s, and others. When I was in residency, we had hepatitis A, hepatitis B and non A non B. Now we are up to G or beyond. Medicine changes and it’s moving as fast as possible for both acute Covid-19 and Long Covid.

The mast cell reasearcher talked about getting the sympathetic and parasympathetic nervous systems back in balance. I think maybe we ALL need that. Every person in the whole world. One way to quiet the sympathetic nervous system is to slow your breathing. Try it. For five minutes, or three minutes. Slow breath in for a count of four or five and slow breath out for a count of five. Let your brain roam around and fuss, but let go of each thought as it passes by and return to counting and breathing.

Slow in, slow out.

Practice and heal.

_____________________

The musicians are Johnathan Doyle and a friend. They were fabulous, last Tuesday at the Bishop Hotel.

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Holding a sing

My parents did not do karaoke. They held sings.

In college, late 1950s and on, they would have a sing. My father played guitar, they would invite all their friends, and sing folk songs. They used the book in the photograph, Song Fest, edited by Dick and Beth Best. Last published in 1955, I think.

I have no memory of the book itself. However, a friend of my father’s bound his copy in 2003 in leather. When I saw it, I searched on line and bought my own. It has words AND MUSIC and a chord progression. When I opened it, I know a song from about every third or fourth page.

My sister and I memorized the songs. We both had hundreds of songs memorized, many from this book, or from records. We photocopied a Beatles record insert and memorized all the words on a long car trip once.

I don’t know much about the Intercollegiate Outing Club Association, but there are still copies of Song Fest on line. My parents had to edit a number of the songs for two small children, since we were picking them up. They chose silly songs, “Dead Girl Songs” (Banks of the Ohio, Long Black Veil, My Darling Clementine, Cockles and Mussels) and work/protest songs. They rarely sang sentimental songs, except for lullabies. I loved to sing. We used to have reel to reel tape with my little sister singing a fifth off when she was three or four, but it disintegrated.

My father, Malcolm Kenyon Ottaway, was a fabulous musician. He sang in prep school, in college, in choruses on the east coast, in Rainshadow Chorale from 1997 until his death in 2013. He loved Bach and the Band and loved to encourage other people to sing. He was in our Community Chorus for years, to help new singers. People must try out for Rainshadow Chorale, but Community Chorus is for anyone who wants to join and sing. After my father died, men would say, “I would try to stand near your father in Community Chorus, to help learn the part. He was so good.”

Here is one of the lullabies from Song Fest:

At the Sings, my parents would start with a song and then go around the room, asking other people to pick songs. Sometimes people were shy, but my folks were really good at getting people to sing. Sometimes we’d have multiple guitars and other instruments. My sister and I had favorite songs too!

For the Ragtag Daily Prompt: karaoke.

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Threw me out of the band

On Sunday I was in Portland with a friend and went to a memorial at the Laurelthirst. It was for a musician named Turtle. Local musicians showed up like crazy. There were at least six very fine guitar players, three on stage at a time and sometimes more. They switched in and out and switched styles. It was a beautiful tribute.

My two favorites were “They threw me out of the band” and one that bemoaned everyone playing music and drinking and that he had to sing another song about another dead band member. Funny and sad.

___________________

For the Ragtag Daily Prompt: delete.

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Learn young

This child is not afraid of the saxophone because she is growing up with it. The saxophone player is her father. She’s ready to help and be up on stage as well! She’ll have a fabulous jazz foundation and her father didn’t miss a note!

This is Tuesday night at the Bishop Hotel in Port Townsend, Washington. Chris Miller and Peter Leopold Freeman.

For the Ragtag Daily Prompt: saxophone.

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Music Magnifies Joy

Ben Sollee is new to me. I heard him at Over the Rhine‘s NoWhereElse Festival. In Ohio.

What a fabulous line up of musicians! Ben Sollee makes joyous music with a cello, his voice and a drummer! They made more noise and more complex rhythms than many much bigger groups! I got one of his albums and three other fabulous groups!

This is lovely:

All things shall perish from under the sky, music alone shall live never to die.

For the Ragtag Daily Prompt: magnify.

The photograph is of another group at the festival: Carolina Story.

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Paths

I am reinventing myself now. After my fourth pneumonia, oxygen continuously for a year and now my fifth pulmonologist since 2012. He did not have much to offer. An inhaler but “We can’t be sure that it will keep you from getting pneumonia.”

Well. So with ME-CFS, myalgic encephalopathy chronic fatigue syndrome, now what?

I am at a fork in the path. At least three forks.

  1. Try to do a micropractice, working with Long Covid people. Who either wear masks or I do not see them. I would have to convince the hospital district that it needs me.
  2. Write. I am doing that, but really focus on it and work on publishing. I have so much art from my mother. She did not really enjoy selling it though she loved having shows and would dress up.
  3. I could focus on publicizing and selling my mother’s art.
  4. There is a trunk from my grandfather. I could focus on that. He states that he wants it published. Grandfather, you were a piece of work.
  5. I could just lie around and travel and play with the cats and make music.
  6. Focus on music. I have written a number of songs. Apparently being hypoxic makes me write songs. I think they are peculiar and wonderful too. Flute, voice, guitar, piano, bass. Hmmmm.
  7. Something else. Who knows what will appear? I am doing art too, the two large sculptural pieces in my yard. A fellow doctor scolded me about one. It’s the one with a logging chain and an oxygen tank, attached to a tree. The title is “Tethered”. Now, why would a local doctor object to that? I have some small pieces too that involve found objects and especially feathers and small stemmed glassware.

Many forks! Now I just need more spoons of energy!

________________

For the Ragtag Daily Prompt: reinvent.

The photograph was taken in September 2021. Where is the path? I got to hear Jonathan Doyle last night, with George Radabaugh on piano. FABULOUS!

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Yammer

You’ve joined my silent dead: doesn’t matter
whether you speak or not. You’d like this song
and be jealous of the skills. I yammer
to my dead, the number rising strong.
At sixty I declare that I am middle aged
Mom dies at sixty-one which feels unfair.
My sister dies at forty-nine, cancer rage.
I watched them both as chemo takes their hair.
You too are dead no words across the breach.
I yammer to you daily in my head.
Agates gleam, treasure on the beach.
You refuse to look, I mourn that you act dead.
You sit stubborn in a rocking chair alone.
You don’t believe your dead will call you home.

For the Ragtag Daily Prompt: yammer.

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Chronic pain #I forget

The CDC has a new set of recommendations for chronic pain.

I will write about them. I have to read them first. Hurts too much, right now, the election, and all the pandemic fighting. Stress people and you see what they are really like.

My church has melted down into a huge fight. I was in a chorus singing instead of being in a meeting. Apparently there is a group that says brown people have “taken over” the national organization of the church. Um. Hello. That is discrimination. Does the color of the skin matter if it is a good leader? Why are people insane? I filled out a county survey on drug use today. I know we have methamphetamines and heroin in our high schools because patients have told me. But then I get to the race question. What race am I? I checked OTHER and wrote HUMAN. The race bullcrap is NOT SCIENCE. I haven’t done any genetics testing. I DO NOT KNOW WHAT RACE I AM THOUGH I LOOK WHITE.

It is important for medicine in that there is proven discrimination with less screen health services offered to “brown” people, whatever the heck “brown” people means. I wish the heavens would turn us all the same color over night. Or perhaps blind us. That is not nice of me and I do not care.

I am glad that this horror came out in my church. Because now the discrimination is out in the open. And the committee has sent out a message saying NO. We WILL stay part of the national organization. We WILL not give in to this discrimination. AND I SAY HOORAY AND BLESSINGS ON THEM.

Here is the new CDC set of recommendations for chronic pain: https://www.cdc.gov/mmwr/volumes/71/rr/rr7103a1.htm . You can read them yourself.

I read to this sentence so far: “Approximately one in five U.S. adults had chronic pain in 2019 and approximately one in 14 adults experienced “high-impact” chronic pain, defined as having pain on most days or every day during the past 3 months that limited life or work activities (5).”

Part of me is horrified and part of me is calm. Because pain is a part of life. Pain, love, joy, fear, it’s all part of our emotional evolved systems to survive, right? If God is love, God is also pain and fear. It is not a split. It is both.

This song is a love song. But to me, it’s a love song from heroin to a woman. One lovely day, a place where there is no pain. There will be pain on the return, the withdrawal. I have patients say, “You need to get me pain free.” My reply was “I will not get you pain free. Pain free is dead. Or at least, they can no longer tell me if the next form hurts.” In this song, “she won’t let on, that the feelings have got so strong.” Addiction, opioid overuse.

I took the photograph of Elwha yesterday. He is my relaxation mentor.