only when I’m hungry (1)

sometimes
I still miss you
then I have to check
if I am hungry

I’m doing well, you see
I only miss you when I’m hungry

I’m moving on
but sometimes I still get hungry

hunger is tied up with fear
in childhood
and grief and abandonment

When you fed me
that was huge

You don’t feed me any more

Sometimes I still miss you
but only when I’m hungry

I think you’ve joined the dead
the angry dead
who didn’t feed me
and didn’t love me

or loved me during anger
and wouldn’t feed me

Sometimes I still miss you
but only when I’m hungry

________________

Photo taken by my friend JB.

Parasympathy

In 2013, Catherine Hodes, director of the Safe Homes Project (a domestic-violence program), started a workshop called “Is it Conflict or Abuse?” An abusive dynamic, she argues, requires one person to have power over the other, whereas conflict involves two people struggling for power. The distinction can be confusing, and in some cases “both people feel like they’re being abused, because they’re not getting their needs met or they’re not getting their way.”

From the Atlantic Monthly article: That’s it, you’re dead to me. September 2022 p. 14.

I think this is a fascinating idea, in the article that questions the internet wisdom of getting rid of “toxic people” in one’s life. When we cut off someone we consider “toxic”, we aren’t peaceing them, are we? Peace me, peace you, how do we actively peace people instead of being afraid, on guard, at war. I think everyone is more afraid after the two years of Covid 19 pandemic and all of the deaths and the Long Haul Covid and war. Everyone has a shorter fuse, everyone is stressed.

Remember that stress activates the sympathetic nervous system, the fight or flight system. The body makes less thyroid and less sex hormones and makes more adrenaline and cortisol. Cortisol is a steroid and great for short term, but bad for long term. If we are continually stressed, cortisol messes up the immune system and we get auto-immune disorders, the body attacking its’ own cells. The adrenaline raises our heart rate and blood pressure, neither of which are good for the heart long term. When the thyroid hormone is on the low side, we feel tired. The adrenaline makes us feel wired and we have trouble sleeping. The cortisol makes us more likely to get sick and raises blood sugar too. The low sex hormones, well, women can stop menses and men start asking for viagra.

So we as a world, need to learn to downregulate the sympathetic nervous system and go back to parasympathetic. The relaxed one. The one where we have less adrenaline and less high cortisol and more thyroid and our gut works and sex works again. How do we get there?

Breathing is one way. Slow breathing: 5 seconds in and 5 seconds out. Work up to 20 minutes. One of my veterans said he was not used to feeling relaxed, it felt weird. Ok, it may feel weird, but maybe we need to practice it. He did. There is circular breathing too, 5 seconds in, 5 hold, 5 out, 5 hold. Zen meditation, facing a wall for 40 minutes, works too. We try not to follow the thoughts. The thoughts pop up anyhow, but not following them down the rabbit hole is interesting and challenging. Mindful mediation and Jon Kabat Zinn’s books and tapes work as well. It takes practice. Practice peace, practice relaxing. Doesn’t that sound like a lovely practice?

Stupid cat videos work for me too. Laughter works. What makes you laugh? I like the silly animal videos, the moose playing with the wind chimes, three baby bears rescued (with care) from a dumpster, with the truck driving off to avoid momma bear. Rocking, knitting, sewing, fishing, walking the beach, cuddling a baby, dancing, listening to music, playing music. Which works for you? Silly movies. I don’t like horror movies, and I love cartoons and animation. Engage the child at heart for the parasympathetic nervous system.

In high school my daughter said that most fights were stupid. “One person says something without thinking. The other person goes off and gets upset. She stops talking to person one, who has no idea what is going on, and they often talk to their friends. So there is this big fight over some dumb comment.”

I don’t think it ends with high school, sadly enough. And before we label someone “toxic”, maybe we need to wander off and breathe, or watch a silly cat video. Whatever works for you that doesn’t hurt others.

We need more parasympathy in the world. Yep, I just made that word up. Relax and if you can’t or won’t, consider practicing.

Peace you and please peace me.

https://my.clevelandclinic.org/health/body/23266-parasympathetic-nervous-system-psns

https://healthnews.com/family-health/healthy-living/how-to-activate-the-parasympathetic-nervous-system/

August 19, 2022

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.

Patient Satisfaction Score

The latest issue of Family Practice Medicine has an article on patient satisfaction scores.

I remember my first patient satisfaction score VIVIDLY.

I am in my first family medicine job in Alamosa, Colorado. I receive a 21 page handout with multiple graphs about my patient satisfaction scores. I am horrified because I score 30% overall. I am more horrified by the score than the information that I will not receive the bonus.

I go to my PA (physician’s assistant). He too has scored 30%. We are clearly complete failures as medical providers.

Then I go to my partner who has been there for over 20 years.

She snorts. “Look at the number of patients.”

“What?” I say. I look.

My score is based on interviews with three patients. Yes, you read that correctly. THREE PEOPLE.

And I have 21 pages of graphs in color based on three people.

I am annoyed and creative. I talk to the Physicians Assistant and we plan. I call the CFO.

“My PA and I think we should resign.”

“What? Why?”

“We scored 30% on the patient satisfaction. We have never scored that low on anything in our lives before. We are failures as medical people. We are going to go work for the post office.”

“NO! It’s not that important! It is only three patients! You are not failures!”

“Three patients?” I ask.

“Yes, just three.”

“And you based a bonus on three patients? And sent me 21 pages of colored graphs based on three patients?”

“Um…”

“I think we should discuss the bonus further….”

I did not get the bonus. It was a total set up and I am not sure that ANYONE got that bonus. Much of the maximum “earning potential” advertised was impossible for any one person to get. You would have to work around the clock. They got out of paying us by having multiple bonuses that each required a lot of extra work…. They were experts in cheating the employed physicians. That became pretty clear and I was 5th senior physician out of 15 in two years, because ten physicians got right out of there. I lasted three years, barely. I knew I would not last when an excellent partner refused her second year of $50,000 in federal rural underserved loan repayment to quit AND stayed in the Valley working in the emergency room. I called the CEO: “Doesn’t this get your attention?”

“She just didn’t fit in.”

“Yes, well, I don’t think anyone will.” I asked my senior partner how she stayed. “You pick your turf and you guard it!” said my partner. I thought, you know, I hope that medicine is not that grim everywhere.

Unfortunately I think that it IS that grim and getting grimmer. Remember that in the end, it is we the people who vote who control the US medical system. If we vote to privatize Medicare, we will destroy it. Right now 1 in 5 doctors and 1 in 4 nurses want to leave medicine. Covid-19 has accelerated the destruction of the US medical non-system, as my fellow Mad as Hell Doctor calls it. We need Medicare for all, a shut down of US health insurance companies, and to have money going to healthcare rather than to paying employees $100,000 or more per year to try to get prior authorizations from over 500 different insurance companies all with different rules, multiple insurance plans and different computer websites. Right now I have specialists in four different local systems. The only person who has read everyone’s clinic notes is ME because it is nearly impossible to get them to communicate with each other. Two of them use the EPIC electronic medical record but consider the patient information “proprietary” and I have to call to get them to release the notes to each other. Is this something that we think helps people’s health? I don’t think so. I have trouble with the system in spite of being a physician and I HATE going to my local healthcare organization. Vote the system down and tell your congresspeople that you too want Medicare For All and single payer.

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

Healthcare Now: https://www.healthcare-now.org/

I have had people say, but think of all the people out of work when we shut down insurance companies. Yes AND think of the freedom to start small businesses if we no longer have to fear the huge cost of insurance: Medicare for all!

Covid-19: long haul II

A few days ago my primary care doctor texts that she wonders if I have the autoimmune form of fibromyalgia.

Red alert. I have not heard about this.

I did a search last night and find this: https://www.sciencedaily.com/releases/2021/07/210701120703.htm.

Now, if you have been paying attention, you know that I was diagnosed with PANDAS in 2012, though Isuspect that it is really PANS. Both are autoimmune disorders. I also think that long haul covid is the same thing or something similar.

Meanwhile, they are now saying Covid-19 Long Haul may ALSO be an autoimmune disorder. Multiple sites below.

There is a paper in Nature that I don’t have access to, annoyingly enough. The fibromyalgia story in the above story is that they have spun antibodies down from human serum of affected and unaffected people and then injected them into mice. The mice get fibromyalgia symptoms from the affected antibodies but not from the unaffected ones. The symptoms in the mice go away when the antibodies fade out, in a few weeks. Aha.

The long haul story says that death from Covid-19 may be an autoimmune response, the antibodies going really nuts and making people bleed or their lungs close down. That is, swell shut. They have been drawing blood to study at different stages of Covid-19 and also checking autopsy patients. Usually autoimmune diseases are more prevalent in women then men but Covid-19 seems to be worse in men. This: “The mechanisms behind the production of such autoantibodies aren’t yet clear. Widespread and long-term inflammation during severe COVID-19 may cause the immune system to produce antibodies to pieces of the virus it wouldn’t normally recognize. Some of those pieces might resemble human proteins enough to trigger the production of autoantibodies.

Excessive inflammation could also boost production of autoantibodies that had previously only existed in the body at very low levels. Vaccination against COVID-19 is much less inflammatory than infection with the virus. In a separate study that looked at COVID vaccination, none of the healthy volunteers developed autoantibodies.” (2)(*)

Here is another fibromyalgia paper: https://www.verywellhealth.com/autoimmunity-neuroinflammation-in-fibromyalgia-5197944. That paper lists the autoantibodies that they are finding in fibromyalgia including gangliosides. The fourth antibody in PANDAS/PANS is anti-lysoganglioside. Aha! So this is sparking a serious revolution in medicine: it is looking like many of the mysterious and difficult to describe and quantify diseases may be autoantibody disorders. The anti-ganglioside antibodies were found in 71% of fibromyalgia patients. There are seven antibodies listed, including one to serotonin. In PANS, they are blaming two anti-dopamine antibodies. None of the fibromyalgia patients had ALL seven, but all of them had some of them. A different pattern in every patient, because we all make different antibodies. Fascinating.

One more: https://pubmed.ncbi.nlm.nih.gov/28339361/. People with lupus are more likely to have fibromyalgia and visa versa. “Increasing evidence indicates that N-methyl-D-aspartate receptors (NMDARs) play a major role in the induction and maintenance of central sensitisation with chronic pain. In this study, we evaluated the role of anti-NMDAR antibodies in the development of FM in patients with SLE.” Lupus and fibromyalgia share an autoantibody. Holy cats. NMDA is ALSO a neurotransmitter. Makes me wonder quite a bit about “psychiatric” disorders.

Remember that we make up all the words. So the autoimmune diseases are usually found by testing for a few antibodies. In the most common autoimmune disorder, hypothyroidism, we usually check the TSH and T4 level, so patient hormone levels rather than antibody levels. Over the last 30 years, we are able to test for more antibodies. Systemic lupus erythematosis, celiac, rheumatoid arthritis, juvenile rheumatoid arthritis. When I was in medical school in 1989, the rheumatology book was an inch and a half thick and there were loads of different patterns of disease. I am sure it is twice as thick now. Our initial test for autoimmune disease is for inflammation: an antinuclear antibody and an erythrocyte sedimentation rate. Some people have rheumatoid arthritis but their RF is negative: they have “sero-negative” rheumatiod arthritis, which is more likely “a different autoantibody that we have not tracked down” rheumatoid arthritis. In chronic fatigue and fibromyalgia, the antinuclear antibody and erythrocyte sedimentation rate are usually normal. I suspect both disorders of being “post” inflammation.

My prediction is a serious medical revolution, where we start regularly testing for autoantibodies. Whether that will be something like a pregnancy test but with hundreds of autoantibodies tested for, or whether there are some key indicator ones that we can find, is not clear. At any rate, trauma, stress and infection all increase the likelihood of getting one of these disorders and we have to figure out how to lower the load of all three.

Do you think people are instinctively quitting their jobs?

I had a phone visit with my pulmonologist yesterday. She was running about 35 minutes late, I sat on Zoom until she showed up. She looks exhausted. “We have less doctors and more patients.” she says. “I was on call for the critical care unit last week and I am on call Monday and Tuesday.” “Please take care of yourself,” I say, “We really need you.” She is smiling the whole time. She is worried about me dropping weight and I am worried about her.

Prayers and blessings all around.


1. https://www.cedars-sinai.org/newsroom/covid-19-can-trigger-self-attacking-antibodies/
2. https://www.nih.gov/news-events/nih-research-matters/autoimmune-response-found-many-covid-19
1. https://www.cedars-sinai.org/newsroom/covid-19-can-trigger-self-attacking-antibodies/
2. https://www.nih.gov/news-events/nih-research-matters/autoimmune-response-found-many-covid-19
3. https://thehill.com/policy/healthcare/591528-long-covid-study-author-explains-four-factors-that-can-predict-how-you-get
4. https://www.the-scientist.com/news-opinion/studies-identify-risk-factors-for-long-covid-69648
5. https://www.dailymail.co.uk/health/article-10436473/Is-people-sicker-Covid-19.html
*If that paragraph does not make people get the vaccine, they are living completely in a mad dream world, IMHO.
6. https://www.nih.gov/news-events/nih-research-matters/misdirected-antibodies-linked-severe-covid-19

For the Ragtag Daily Prompt: flickering. As in flickering hope.

Adverse Childhood Experiences 12: welcome to the dark

Welcome to the dark, everyone.

When you think about it, all the children in the world are adding at least one Adverse Childhood Experience score and possibly more, because of Covid-19. Some will add more than one: domestic violence is up with stress, addiction is up, behavioral health problems are up, some parents get sick and die, and then some children are starving.

From the CDC Ace website:

“Overview:Adverse Childhood Experiences (ACEs) are potentially traumatic events that occur in childhood. ACEs can include violence, abuse, and growing up in a family with mental health or substance use problems. Toxic stress from ACEs can change brain development and affect how the body responds to stress. ACEs are linked to chronic health problems, mental illness, and substance misuse in adulthood. However, ACEs can be prevented.”

Well, can they be prevented? Could Covid-19 be prevented? I question that one.

I have a slightly different viewpoint. I have an ACE Score of 5 and am not dead and don’t have heart disease. I spent quite a bit of time thinking about ACE scores and that it’s framed as kids’ brains are damaged.

I would argue that this is survival wiring. When I have a patient where I suspect a high ACE score, I bring it up, show them the CDC web site and say that I think of it as “crisis wiring” not “damaged”. I say, “You survived your childhood. Good job! The low ACE score people do not understand us and I may be able to help you let go of some of the automatic survival reactions and fit in with the people who had a nice childhood more easily.”

It doesn’t seem useful to me to say “We have to prevent ACE scores.” Um. Tsunamis, hurricanes, Covid-19, wars… it seems to me that the ACE score wiring is adaptive. If your country is at war and you are a kid and your family sets out to sea to escape, well, you need to survive. If that means you are guarded, untrusting, suspicious and wary of everyone, yeah, ok. You need to survive. One of my high ACE Score veterans said that the military loved him because he could go from zero to 60 in one minute. Yeah, me too. I’ve worked on my temper since I was a child. Now it appears that my initial ACE insult was my mother having tuberculosis, so in the womb. Attacked by antibodies, while the tuberculosis bacillus cannot cross the placenta, luckily for me. And luckily for me she coughed blood at 8 months pregnant and then thought she had lung cancer and was going to die at age 22. Hmmm, think of what those hormones did to my wiring.

So if we can’t prevent all ACE Scores, what do we do? We change the focus. We need to understand crisis wiring, support it and help people to let go of the hair trigger that got them through whatever horrid things they grew up with. 16% of Americans have a score of 4 or more BEFORE Covid-19. We now have a 20 or 25 year cohort that will have higher scores. Let’s not label them doomed or damaged. Let’s talk about it and help people to understand.

I read a definition of misery memoirs today. I don’t scorn them. I don’t like the fake ones. I don’t read them, though I did read Angela’s Ashes. What I thought was amazing about Angela’s Ashes is that for me he captures the child attitude of accepting what is happening: when his sibling is dying and they see a dog get killed and he associates the two. And when he writes about moving and how their father would not carry anything, because it was shameful for a man to do that. He takes it all for granted when he is little because that is what he knows. One book that I know of that makes a really difficult childhood quite amazing is Precious Bane, by Mary Webb. Here is a visible disability that marks her negatively and yet she thrives.

A friend met at a conference is working with traumatic brain injury folks. They were starting a study to measure ACE scores and watch them heal, because they were noticing the high ACE score people seem to recover faster. I can see that: I would just say, another miserable thing and how am I going to work through it. Meanwhile a friend tells me on the phone that it’s “not fair” that her son’s senior year of college is spoiled by Covid-19. I think to myself, uh, yes but he’s not in a war zone nor starving nor hit by a tsunami and everyone is affected by this and he’s been vaccinated. I think he is very lucky. What percentage of the world has gotten vaccinated? He isn’t on a ventilator. Right now, that falls under doing well and also lucky in my book. And maybe that is what the high ACE score people have to teach the low ACE score people: really, things could be a lot worse. No, I don’t trust easily and I am no longer feeling sorry about it. I have had a successful career in spite of my ACE score, I ran a clinic in the way that felt ethical to me, I have friends who stick with me even through PANDAS and my children are doing well. And I am not addicted to anything except I’d get a caffeine headache for a day if I had none.

For the people with the good childhood, the traumatic brain injury could be their first terrible experience. They go through the stages of grief. The high ACE score people do too, but we’ve done it before, we are familiar with it, it’s old territory, yeah ok jungle again, get the machete out and move on. As the world gets through Covid-19, with me still thinking that this winter looks pretty dark, maybe we can all learn about ACE scores and support each other and try to be kind, even to the scary looking veteran.

Take care.

chronic fatigue

I am realizing that I have had chronic fatigue since 2014. Or possibly 2012.

We know that chronic fatigue can be kicked off by infection. One in ten people with a severe infection is diagnosed with chronic fatigue. Severe stress can also kick it into gear or a combination of stress or grief or attack or assault and infection can kick it in to gear.

We don’t really understand it, though I am finding experience to be a very great teacher.

As far back as medical school and residency, I was curious about it. I love the edges of things: it is the things that we don’t understand that I study. I pick up bits of information like a crow or magpie. I add it to the pile of things related to it in my brain. Sometimes I will add just one more small piece and the entire pile of puzzle pieces with suddenly, in just a blink, rearrange itself into a picture.

The pieces won’t arrange themselves until I have a complete picture. Or, well, until something in my brain is satisfied that it is complete enough. Since nothing is every complete or completely understood, is it? Nothing fixed and we make up all the words.

Anyhow, chronic fatigue would explain why running my own clinic, I did not see more than ten patients a day. Also I do have some OCD, hidden under a messy packrat gene. You would NOT look at my house two months ago and think that I have some OCD. Messy and chaotic. But I am a precision demon about patient charts and I am always thorough. In 2009 our local hospital let me know that my reputation was of a brilliant diagnostician. Ironically, this was right before they fired me for arguing about the patient quota of 18 per day. I ran late because I could not stop being thorough. I cut my work from 4 days a week to 3.5 but that was still two hours of dictating and paperwork for every day of clinic. So clinic was 28 hours plus the dictating and paperwork and calling specialists and calling insurance and a one hour meeting at lunch with the administration EVERY DAY FOR MONTHS, so really clinic was 8 hours of patient contact plus the one hour lunch meeting. Redo the math: 28 hours plus 4 one hour lunch meetings plus 7 hours of the generated deal with stuff AND do not forget about call nights. 39 hours plus call. At least one call night a week, 6 pm to 8 am, so that is 51 hours or more. I felt that I was working flat out as fast as I could every single day in clinic and I still was not keeping up.

I also really really resented the one hour lunch meetings because I was only allowed 20 minutes for a patient and was to see them “for one thing”. Seeing people “for one thing” is unethical and dangerous because for example: a diabetic with a toe infection. That is already two things. But you’d better calculate the third: kidney function, because you have to dose the antibiotic for the toe based on the kidney function, and diabetes is the number one cause of adult kidney failure in the US. Oh, and you’d better check on the diabetes too, because if their blood sugar is whomping out of control, the toe won’t heal and that’s how they got infected in the first place. So I might have ranted a bit about seeing people “for one thing” because I think it is an UNETHICAL DANGEROUS LOAD OF CRAP. DO NOT PUT UP WITH IT, DOCTORS AND PATIENTS OF THE UNITED STATES. It is corporate trying to maximize profit and they can frankly go to hell and stay there. Single payer. ‘Nuf said.

Even more ironically is that two years after they fired me for vocally disagreeing with the quota (I would add that I was not diplomatic and I was vociferous), the hospital dropped the quota down. To what I had asked for, 16 patients a day. I actually had kept track through my career and knew that I averaged 16 patients a day. One partner usually saw 20 or 21, but the problem was that he kept the chart in his head. When I would get one of his patients, I’d have to say, “Um, you have some heart disease, right? You’ve had a heart attack or a bypass? What year was the bypass? How many vessels?” I’d be guessing from the medicines and clues… but the past history was not entered into the chart. So, yeah, I only saw 16 patients a day but my charts were solid and thorough and the charts on his patients were a lot more comprehensible every time I saw one of his patients and did the chart for him. He owes me. Pay up.

Anyhow, I have worked really hard for the last seven years, in spite of some chronic fatigue and fibromyalgia. Which I rather refused to admit to myself. I thought I was “well”. I felt bad that I didn’t clean up my chaotic house.

Now I forgive myself for the house. Because the truth is I couldn’t clean up the house. Not after 7-10 patients and running my own clinic, CEO, chief cook and bottle washer, dealing with the covid changes, trying to figure out medicare’s arcane language, fielding malpractice insurance, business insurance, insurance insurance and phone company scam calls.

I have been sick at home for 6 weeks. I have been on oxygen for 4 days? 5 days? I would have felt a lot better and been able to think better if I had been on oxygen the whole time. Meanwhile, turns out I CAN clean up and organize in spite of being hypoxic. My house is now a very different place and the garden has changed enormously very quickly.

I am sending more money to India, via https://www.pratham.org/ . I can hardly bear to think about the people who cannot get oxygen. It feels terrible and terrifying to not be able to breathe. My chest hurt and lungs and heart when I even sat up, much less walked. If I walked slowly enough, it was bearable, just barely. I walked anyhow. Those edges, I am always there.

It is very weird being on oxygen. I have told people in the past when I had pneumonia. I’ve almost died from it four times. Heart rate of 135 holding oxygen level, but it doesn’t feel good. I am confident that I do not have coronary artery disease, because if I did, I would have had a heart attack the first week. A heart rate of 135 is running a marathon. It is exhausting. Right now on oxygen, my heart rate is 86 and oxygen at 98%. My normal heart rate is more like low 70s. Normal is 60-100, you knew that, right?

It is very weird being on oxygen. Because now I have a visible signal that I have been/am sick. Somehow this is making people more kind, more concerned. I keep thinking, but I told you I was ill before. Why does being on oxygen make people kinder?

I think that is the difference between having an illness where there is not much comprehension and one that we think we understand. So chronic fatigue and fibromyalgia are dismissed, disrespected and discriminated against, while cancer and sepsis and covid-19 and massive trauma in the military are supported. People send gifts.

In the past, tuberculosis was thought to be an illness of sensitive poets. Then the tuberculosis bacillius was discovered and it morphed into a disease of the poor dirty overcrowded low scum of humanity. My mother had tuberculosis, but luckily it was when we’d moved on to sanitoriums, because it is airborne, so stop the spread and take care of people. There was also medicine. My mother had to take 36 pills a day. At one point in the hospital, someone brought her a medicine.

“What is it?” asked my mother.

“Don’t worry about it.” said the nurse.

“No,” said my mother. “I want to know what it is.”

The nurse got the doctor. He came in and said, “Take the pill.”

“What is it?” said my mother. She was 22, 8 months pregnant, very poor, and a student at the University of Tennessee.

“Don’t worry about it.” said the doctor.

My mother threw it at his head. Because not only was she 22, 8 months pregnant, very poor and a student at the University of Tennessee, but she was also the daughter of F. Temple Burling MD, a psychiatrist, physician and professor at Cornell University.

And he had told her, don’t take anything unless you know what it is…..


________________________________________________________________

The picture is of my mother, Helen Burling Ottaway, in 1945. Helen Temple Burling II at the time of the picture.

________________________________________________________________

I think the final straw that made the hospital fire me was me singing “The 18 Patient Blues” which I’d made up, to the tune of 16 Tons, into the Chief Financial Officer’s voicemail and at the open mike at the Upstage, here in town. I admit, it was not diplomatic.

Aces again

I am singing: “You are coming up ACES!”

Ok, but, hopefully not. Because I am talking about ACE scores, Adverse Childhood Experiences. See the CDC website, this is all based on a ginormous Kaiser study in the 1990s.

Here: About the CDC-Kaiser ACE Study |Violence Prevention|Injury Center|CDC

Yep. A very very interesting topic for a rural family practice physician.

For the Ragtag Daily Prompt: ACE.

deep

today goes deep

I let it

when someone says “You are too emotional.”

it means “I am not comfortable with your emotions.”

it is them not me
I could care less
what they think
what they feel
whether they are comfortable with my emotions
they will be on my shit list
until they learn

I am comfortable with my emotions

today goes deep

I let all the darkness rise
grief
anger
disillusionment
humiliation

and my small child

is wild
with joy

this day is yours
small child

I am with you today
all day
you I the Beloved

no shoulds today
no list
nothing that you do not want to do

food
music
warmth
church
beach walk

I will not clean
I will not pay bills
I will not sit with fools
who say I am too emotional

we can laugh
or cry
or rage

would you like to smash a plate?

no
says small child

food
warmth
outdoors
birds
deer
music of the spheres

here
dear one

we go deep