Category Archives: activist

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Lose the chest strap

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.

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Daily Evil: Q is for Quiet

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.

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You will be labeled

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.

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Theme for April: Daily Evil

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!

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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.

For the Ragtag Daily Prompt: placid. Heh.

Ooooo and later:

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Imprecation

imprecation

damnation

what a nation

what a notion

needs some lotion

or a potion

to awake

not be baked

by booze or sun

just no fun

we’re on the run

after the clock

time in hock

where are our socks?

get up woke

or you’ll get a poke

job loss no joke

worry re banks

sink or sank?

money there give thanks

worry heaps

til back asleep

falling deep

imprecation

what a nation

__________________

For the Ragtag Daily Prompt: imprecation.

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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:

https://music.youtube.com/watch?v=yYOPr4SSSEo&list=OLAK5uy_mRyE2ZBb8s_LYFam77uMP76ayELbYtVd8
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?
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As I was going to Washington, DC

As I was going to Washington, DC

I met insurance CEOs who said “Whee”!

500 Insurance CEOs said Weeee!

Have ten insurance plans EEEEEach!

Every plan has it’s own website!

Every plan is different, password for each site!

Every plan refuses coverage for different treatments, right?

Every plan demands prior authorization, doctor’s office up all night

If they refuse chemotherapy the doctor has to fight?

Prior auths, treatments, passwords, plans

Insurance companies, all those demands

As I was going to DC

How many passwords will I need?

______________________

For the Ragtag Daily Prompt: snail.

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?

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

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Make space for the difficult feelings

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.

The four videos are here: https://www.panspandasuk.org/trauma.

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.

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Walk with rabbits

Some days I can’t chuckle
when the news rolls in
my heart could buckle
shootings again

US gun habits
What’s up doc? Dagnabbit.

Shootings on the year of the rabbit
dancers dead as they celebrate
Why are guns such a habit?
I refuse to fill my heart with hate

Gun sales stab it
Year of the rabbit

Forgive but do not reconcile
let my resolve not buckle
mental health takes a while
let no demented chuckle

Fearful gun habits
online snared like rabbits

They argue they must defend their homes
daughter teacher on the line
fearful males online alone
think that guns will make them fine

Fear is a habit
Stop being rabbits

Leave your basement
Help another
Walk the pavement
Earth as mother

Make it a habit
To walk out with rabbits

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For the Ragtag Daily Prompt: chuckle.

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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.

______________________________

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.

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In the box

Wednesday was interesting and frustrating and part was beautiful.

The beautiful part was arriving at the Kingston, Washington ferry dock early. I took photographs of the quite gorgeous light display while I waited for the 6:25 ferry.

On the other side, I drove to Swedish Hospital, Cherry Hill. There I had another set of pulmonary function tests. The technician was very good. She said that since I have a normal forced vital capacity it does not look like asthma. However, a ratio was at 64% of normal, which is related to small airways.

“Have you had allergy testing?” she asks, “And a methacholine challenge?”

“Yes,” I say. “Both. In 2014. No allergies at all and the methacholine was negative.”

“Hmmmm.” she says.

Afterwards we call pulmonary. I have an appointment on this next Wednesday but we call and ask if there is a cancellation and I can get seen today, since I am two hours from home already.

Yes, there is, but I have to hurry to Issaquah, Washington.

There is an accident on the I90 bridge, so I do not think I will make it. But I am there by ten and the pulmonologist will see me. I check in, fill out paperwork, wait, go in the room, a medical assistant asks questions.

The pulmonologist comes in. He is nice and is able to pull up the chest CT from 2012, two of them since the first one “couldn’t rule out cancer”. Since I am referred for hypoxia without a clear cause, he questions me about my heart. Echocardiogram, zio patch (2), bubble study, yeah, it has all been normal. I describe getting sick and tachycardic and hypoxic and coughing.

“Do you cough anything up?”

“No.”

“Do you cough now?”

“Yes, if I exercise or get tired.”

He is like many physician specialists that I have seen. He has a number of pulmonary diagnoses, or boxes. Emphysema, COPD, lung cancer, bronchiectasis, chronic bronchitis, the progressive muscular disorders. All of those are ruled out in the past. So he puts me in the asthma box.

“I thought asthma was ruled out with the methacholine.” I say.

“Well, you have SOMETHING going on in the lower airways, and it was present in the 2021 and the 2012 pulmonary function tests. Maybe an asthma medicine will help.”

I mention ME-CFS and my muscles not working right, but he only deals with lungs. He won’t say a word about those disorders.

Sigh. I do not get the improvement with albuterol that diagnoses asthma on the pfts and never have. The formal reading of the pfts is that I do not meet criteria for asthma but there is something in the lower airways.

Monsters, maybe? I’ll try the inhaler, though with skepticism. Antibodies seem like a better guess, but antibodies are outside this pulmonologist’s set of boxes.

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The photograph is from Swedish, Cherry Hill, bird’s eye view from the balcony.

Methacholine test.