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…..


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

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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/

practicing grandmother

My sister sends me a t-shirt years ago.

It says, “I don’t know if I am the good witch or the bad witch.”

I burst into tears and put it in the trunk of my car. I never wear it. I am the designated bad witch for half my family. We won’t go into that.

She gets a shirt too. Hers is the green one. Mine is black.

She is dead, in 2012, breast cancer. It’s hard to describe the fallout. Toxic and radioactive. But… I have decided not to be a witch.

Instead, I am a practicing grandmother.

Really I’ve been one for a while. There was a young couple who lived down the street with two children. This was in 2014. I am a Facebutt friend, so sometimes noted what was happening. The father has to travel for his job. The mother is trying to care for two kids and work and so on… been there.

In 2014 I am recovering from my third round of pneumonia. This third round it takes six months before I can return to work. Short of breath and coughed if I talked. The state medical watch doctors want to disable me but I fight them tooth and nail. I win. In retroscope, oops, I mean retrospect, they were probably right.

Anyhow, I wander down to the neighbor and offer my services. She already knows me. She is instantly grateful and two year old T is introduced to me, again. He doesn’t really remember me. She explains that he is coming to my house for a little while and then back home.

T and I walk towards my house.

A nuthatch calls.

I stop and reply. In college I took ornithology and the teaching assistant could do a barn owl call so well that the barn owls would do a territorial fly over at night to see who had the weird accent. Marvelous.

The nuthatch and I went “enh” back and forth. T is amazed. This woman talks to birds. Then we see the nuthatch! I point out how nuthatches come down a tree head first. “If you hear that call, it’s a nuthatch. Look for it.” The nuthatch is very cooperative. Magic.

We get to my house. T is clutching a book. “He’s taking it everywhere,” sighs his mother. “I’m not sure why.”

So first we read the book. It is a board book about a farm. Each page has a central picture and then there are pictures around the edges with the word under each picture. On one page T says, “Haaaaay.”

“Oh!” I say, delighted. “You can read HAY!”

His face lights up. An adult who gets it! Yes! He can read HAY!

On another page he says HAY. “Oh,” I say, “That is straw. Straw is a lot like hay but it’s not exactly the same.”

He is very serious absorbing that information.

I show him my closet. There is a stick horse. Only it isn’t a horse: it’s a unicorn dragon, with a forehead horn and wings. When you press a button it’s eyes flash and it roars.

Ok, that’s pretty scary. He wants the closet door closed and he does NOT want to play with the dragon.

Next is pouring. I get out a towel and put it on the kitchen floor. I get out a rather nice expresso set. Bright colors. Orange and green and yellow and blue. I fill the coffee pot with water and invite him to sit on the towel. “You can pour the tea.”

He looks at me with surprise. He picks up the coffee pot. He looks at me again. “Go ahead. It’s ok.” He starts pouring into a cup. He pours until the cup overflows and the saucer overflows and he keeps pouring. The coffee pot is empty. He looks at me a little warily. This is technically spilling and he knows it.

“Would you like more in the teapot?”

He nods.

I refill the coffee pot with water and he starts again, with a different cup.

When I return him to mom, after two hours, he’s damp. “Sorry, he got a little wet, but it’s just water,” I say cheerfully. Mom is too harried to do much more than look resigned at a change of clothes. I tell her about him being able to read the word hay.

Next time he comes with a change of clothes and his large stroller, in case he goes down for a nap.

And first off, he goes to the closet. Time to hear that dragon roar again.