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.

broken

I wrote this poem in 2014. Sometimes you know things without knowing them. Or you know them before you are ready to know them and so…. you forget.

broken

I think you said
“Break her.”

And you told them how.

You told them my weaknesses
and my strengths.

You told them that I twisted your words.

You said, “You twist my words.”
K said, “You twist my words.”
S said, “You twist my words.”
Ko said, “You twist my words.”

and on everything2
they, too, twist my words.

Twist
twisted
fisted.

When the outer is charming and perfect
the damage is inside.

I wear my spikes on the outside.


No one, to date, has been allowed more then
visitation rights
inside.

No one except
you
and my children
and all children.

Only they are allowed inside.

Twist
twisted
fisted.

I am broken.

But I was always broken and knew it.

I hope that no one cut their hands
when they tried to smash me.

Pretty on the outside
deadly on the inside.

Yet I think a spark in you said,
“Break her.”

What you didn’t tell them
is that I don’t bother to lie
because no one listens anyhow
no one ever listened
and so I can always tell the truth
until they stop listening.

because they don’t believe me

but you knew

I tell the truth

And I was already broken.

8/22/14

And this should connect to this: https://drkottaway.com/2014/11/

Influenza: check your pulse!

This year influenza is bad. My key test in influenza is not a chest x-ray. It is taking a resting pulse and a walking pulse.

Why? Influenza can cause a walking pneumonia. Walking pneumonia is where the lungs are infected throughout and there is tissue swelling. It is different from a lobar pneumonia. In lobar pneumonia people run a higher fever, look sicker, and on the chest x-ray, that part of the lung is white: infection, not air.

In walking pneumonia, the chest x-ray may be read as normal. This is because all the lung tissue is equally swollen. The swelling means that there is less air space. The person may feel ok at rest. They feel exhausted when they walk because the heart must take up the slack for the missing air space, the swollen lungs. At rest this week one person’s heart rate is 84. After walking it is 124. Normal is 60-100, so 124 is like running a marathon: exhausting and hard on your heart and body.

I have patients saying “I was sick two weeks ago and I am still exhausted.” If their pulse is much over 100 after they walk, they cannot work until it comes down. If they work and wear themselves out, the lungs can’t heal. The treatment is rest. If they are at work with a pulse of 114 or 124, then they risk getting a secondary infection in already damaged lungs. They could die.

Check your pulse at home. Count the number of heartbeats in 60 seconds. That is your pulse. Walk around, sit down, and check again. That is the walking pulse. Over 100 is not normal.

This is a bad influenza. The tamiflu (oseltamivir) helps but works best in the first three days of flu. Check your pulse, be seen, rest and get well.

http://www.peninsuladailynews.com/news/three-die-of-flu-on-peninsula-public-helath-officals-say-a-fourth-death-said-to-have-been-in-seattle/

crossroads

Regardless of how the vote goes, I will keep speaking up.

It is so painful to have woman after woman saying, “I have stories too.”

And to the “nice” men who say, “I can’t believe that sort of thing. I can’t read about it. It hurts too much.” YOU are silencing too. YOU are part of the problem. As long as YOU refuse to listen, refuse to speak up, refuse to read about it: YOU PRETEND TO YOURSELF THAT IT IS NOT HAPPENING TO YOUR WIFE, YOUR SISTER, YOUR MOTHER, YOUR DAUGHTER. YOU PRETEND THAT IT ONLY HAPPENS TO “THOSE” WOMEN, THAT THEY ARE FEW, THAT IF THEY HAD TAKEN PRECAUTIONS IT WOULD NOT HAVE HAPPENED, THAT YOU ARE PROTECTING “YOUR” WOMEN.

Speak up, “nice” men. Are you ASKING the women in your life? Or are you silencing them?

Sweet Honey in the Rock: Joanne Little.

 

speaking up 3

Here are speaking up and speaking up 2.

More events in my life:

I am on the metro in Washington, DC. It is not rush hour. I am reading my book.

I suddenly realize  as the metro stops, my car is empty. I am the only one in the car. One man gets on. I am hyperalert. He walks down the car and sits next to me.

The car starts up. I stare at my book.

“Hi.” he says, “What’s your name?”

I don’t answer.

“C’mon. What’s your name?”

“I am reading my book. I don’t want to talk.”

“C’mon, baby, be nice.”

I stand up, purse and book. “Excuse me.” I step by him and stand at the metro car door. I get off that car at the next stop and move to the next one with people on it. Shaking with both the threat and anger, that I have to deal with this.

2. I take a dance class in Washington, DC. I work at the National Institute of Health. I leave my car at NIH and ride the metro.

One night I get off the metro at NIH and I am riding up the escalator, with my backpack.

A man, clearly drunk, steps up on the escalator beside me, and says “Hi, baby, what’s your name?”

“LEAVE ME ALONE!” I snarl and stomp up the escalator. It is dark and there are very few people at the stop and in the lot. I am in danger from this drunk.

I am walking fast at the top, away from the escalator, when I hear running steps behind me. WHACK! He takes a swing at me and runs off. He hits my backpack and not me. I am screaming at him.

He is gone. I run to my car, get in, and sit there, hands on the wheel. Shaking. There is a part of me that wonders what I would do if he crossed the road in front of my car.

My next class is not dance. I take tae kwon do.

3. I have used my tae kwon do once so far. Where? In first year medical school.

No way, you say.

Yes, way.

We have lecture after lecture in the same hall. We usually sit in the same places. I am newly married. The guy behind me starts tickling my neck during a lecture, with a pen. I twitch a couple times and then hear muffled giggles and realize that it’s the person behind me.

I stiffen and wait until I am really ready. Breathe. The tickle comes. I snap a basic block back and forward: and have his pen.

He SCREAMS!

The whole class turns towards us. The lecturer stops, staring. I am facing forward, holding the pen down low, not moving. He has the entire room staring at him, everyone but me. He doesn’t say a word. You could hear a …. pen…. drop.

The lecturer shakes his head and continues.

I keep the pen.

Just think, he’s a doctor.

I took the photograph when we were in Wisconsin. I went to UW Madison. I like being a badger.

fall

For the Ragtag Daily Prompt: fall.

Trigger warning: speaking up 2, to follow speaking up.

So: why do the WOMEN have to speak up?

Why don’t MEN speak up? Ok, gentlemen: every man who participated in a “train” or a gang rape or who had sex with a woman who they now are not sure consented or who has made more money than a woman in the office and knows it or who has sexually abused a child: how about YOU speak up. FALL ON YOUR KNEES AND SPEAK UP.

Confess. Pay reparation. We know you are out there. Are you waiting for ALL of the women to speak up? How about you step forward, bust yourself, bust the other men? When are you going to be MEN? When are you going to take responsibility?

Why do WOMEN have to speak up? Let’s see the MEN speak.

Our tears have been falling for years. It’s time for men to speak, to bust each other, to break the silence, to confess: speak up.

Speaking up

For yesterday’s Ragtag Daily Prompt: justice.

I keep hearing “Why didn’t she speak up sooner?”

I spoke up. I was 7. The abuser was a neighbor. Nothing was done. I thought it was my fault, that I was not a virgin, and that at age 7 I was pregnant. I did not understand puberty. I spoke up to my mother, who dismissed it.

So I did the only thing I could: I tried to protect myself and my four year old sister. I told her never ever to go near that neighbor. And I never went near him again.

I was taken for a well child check a month or two later. I didn’t say anything but I thought that surely the doctor would have noticed if I was pregnant, so I must not be.

I grieved on the school bus, thinking that I was the only girl who was not a virgin. I was wrong about the not a virgin, but I also was probably wrong about being the only girl.

I didn’t even realize that hello, I was seven, it was not my fault, I didn’t even understand what was happening. I didn’t understand until I was in college and heard a radio program about how women who are raped feel guilty. Here is a poem about that realization: The bacon burning.

So do you think I spoke up after that? Why would I? No one helped me and I was silenced. I learned this lesson: no one will help and I am on my own. I did speak up in medical school: Make a difference.

Where is justice? And do you really want us ALL to speak up now? About ALL of it?

When I was in my early teens, a friend of my parents french kissed me. He said, “I wanted to be your first french kiss.” Hello, I avoided him after that and did I want a french kiss from an old friend of my parents? He had a PhD but no boundaries, no emotional intelligence and poor ethics.

Shall I go on? In college I worked in two labs: both fruit fly labs. In one the graduate student was professional, courteous and quickly gave me a raise. In the other, I never saw the professor again and I was ignored. I went to resign from the second. The PhD professor said, “What do you plan to do after college?”

“What do you mean?” I asked.

“Do you plan to get married and become some man’s cow?”

Oh, really? Do you Mr. PhD professor refer to all married women as men’s cows? Would you have the same conversation with a male student? I quit. I don’t like you or your lab and that sort of comment reinforces my dislike.

In medical school we had two female physicians on the faculty. One was married but no children. Residents joked about her, that she had the balls in the family, because they were both physicians. The other was not married, an OB-gyn. We asked her to speak to our Women in Medicine group about children and career.

“If you want to be taken seriously as a physician, you should not have children.” she said.

I asked, “What if we have a house husband?”

“No man’s ego could stand up to that,” she replied.

I have children and a career.

I had worked in a clinic for a year and another provider talked to me. “Do you know that they are paying the other physician (male) twice what they are paying you?”

Oh, really? I set up a meeting with the administration.

“Oh, the male physician is the clinic director, that’s why we pay him more.”

This was a lie. I had been in the clinic for a year and there had never been one word that he was clinic director. The next year they standardized paying us by RVUs: his salary went down and mine went up. And so justice was done, right? No, the male physicians are given jobs such as head of hospice or medical director and extra money. Do they work harder? The jobs are not offered to the women physicians.

A male physician at the hospital was made chief of staff. He asks me in the hall, “Do women physicians just quit because they want to stay at home with children?”

“Do you want a serious answer?” I said. He looked surprised. We went to an office and I discussed that almost all the hospital staff were women at that time and that they have a different relationship with female physicians than male physicians. Most of the administrators were male, white males.

So really, do you want all the women in the US to speak up? Maybe we all should. The above is not anywhere near an exhaustive list, it is a start. This is just from thinking about it for two days. I can fill pages…..

 

 

 

 

Not quite acculturated

And she was unsympathetic
That doctor
That immigrant doctor
I heard she told a patient
“You’re too fat.”
This was whispered
In accents of pleased shocked horror

She came to dinner
That unsympathetic doctor
Southeast asian
Told a little of her story
To my wide eyed children

When she was 10
They were boat people
Escapees
Refugees
Pirates caught them
Real pirates
“They weren’t so bad,” she said
“We were about to die from lack
of food and water
Though we heard other stories
that were very bad.”

My daughter could imagine the boat.
She moved to my lap.
The pirates were too real.

Perhaps plenty is not always taken
for granted
And sympathy is a matter of degree.

 

previously posted on everything2.com in 2009 and here too, though I have not figured out how to find it….

for the Daily Prompt: enlighten.

Luminous night of the soul: https://www.youtube.com/watch?v=0OaRZrdoTQ0

 

Make a difference

In medical school I made a difference.

I was with two women and two men from class. We’d had a lecture on rape that day. One of the guys piped up, “If I were a woman and I was raped, I’d never tell anyone.”

“Man, I don’t feel that way.” I said, “I would have the legal evidence done, have the police on his ass so fast his head would spin and I would nail his hide to the wall.”

He looked at me in surprise. “Um, wow. Why?”

I took a deep breath and decided to answer. “You are assuming that you would be ashamed and that as a woman, it is somehow your fault if you were raped. I was abused by a neighbor at age 7. At age 7 I thought it was my fault. I thought I might be pregnant, because I was a bit clueless about puberty. I made it stop and tried to keep my sister away from the guy. When I went to the pediatrician the next time with my mother, I decided that since he didn’t say I was pregnant, I probably wasn’t. When I started school that year, second grade, I thought sadly that I was probably the only girl on the bus who wasn’t a virgin.

In college, I heard a radio show about rape victims, how they blame themselves, often think they did something to cause it, are often treated badly by the police or the emergency room, and feel guilty. All of the feelings that I had at age 7. I realized that I was 7, for Christ’s sake, I wasn’t an adult. It was NOT my fault.

If I walk down the street naked, I’m ok with being arrested for indecency, but rape is violence against me and no one has that right no matter WHAT is happening.

And child sexual abuse is one in four women.”

The two guys looked at the three of us. After a long pause, one of the other women shook her head no, and the other nodded yes.

The guy shook his head. “I never believed it. I didn’t think women could be okay after that.”

“Oh, we can survive and we can heal and thrive.”

We had the lecture on child sexual abuse a few months later. My fellow student talked to me later. “I thought about you and — during the lecture. I thought about it completely differently than before you talked about it. I would deal with a patient in a completely different way than I would have before. Thank you.”

 

previously posted on everything2.com in 2009

for the Daily Prompt: release

loyal

For the Daily Prompt: loyal.

I am thinking of the men working with the Weinstiens and the Cosbys. They might have heard a rumor, but they ignored it? Women are free to speak up if there is a problem?

No, gentlemen, actually women are only “free” to speak up if they are rich and in massive groups.

Otherwise, we are dismissed, silenced, disbelieved and ignored.

For me, it was at age 7. Are you going to say I was dressed wrong? I was too sexy? I should not have been alone with him? It’s my fault?

The water is beautiful and reflects the sky. What do you think is there beneath the surface in the depths?