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/

stealthie in the grass

Stealthie in my yard, two days ago. I like the current crop of grass and weeds.

Music: Simon Lynge Hallelujah: https://www.youtube.com/watch?v=iIHpeaHJJ9s

His website is here: https://simonlyngemusic.com/. Hey Simon, when do we get another local concert? Concert in the grass? Hugs, ya’ll.

myalgic encephalopathy

Myalgic Encephalomyelitis, actually. I put encephalopathy on the Ragtag Daily Prompt, but …. my brain is still a bit fuxxy. Yeah, tried to type fuzzy. It’s sometimes annoying and sometimes funny. I have a little trouble with my balance, as if my proprioception is not quite working right. I have not fallen, but that is really my dance chops. All those years jitterbug dancing, I recover my balance very well. However, I am staying off of ladders for now.

The antibodies are annoying. The dopamine ones are down a little, which is a relief. I still spent 20 minutes this am organizing CDs into categories. This satisfies both the ADHD and the OCD bugs. I have four categories: women musicians, rock and blues, classical/ethnic and local/folk. Sometimes I don’t know where the hell to put a CD. Southern Culture on the Skids… hmm. Harry Connick jr…. double hmmm. I now have a pile of movie soundtracks and a pile of DUNNO. I have picked up CDs at garage sales when they are a dollar each. Random. Those are in a separate “listen to it and decide” pile. They could end up in the library box outside if I dislike them enough. There seems to be some rap, I don’t have tons of that. Punk, now, it gets filed with the rock except when it’s more Americana…..

I can lower the antibody levels with a hot bath. Tend to wait until I really have to eat, eat, then with the antibodies start poking me I have the hot bath. A sauna would help as would a hot tub. Dang. Where is my hot tub? I hurt a lot more if I eat gluten or get my blood sugar high. Sugar is bad. Rice is pretty ok, though muscles hurt afterwards. I’ve long since trashed my glycogen stores, so my blood sugar will drop back to ketosis within 2 hours instead of taking 2-3 days. Feels terrible while it is happening. I get really cold and achy and just feel like I am dying. Lie down, wrap up in a really warm pile of blankets. I feel the shift: lights get brighter, sound gets louder and the pain switches off. Then I get too hot and throw off the blankets and have some energy again. I still have to behave: any little thing like starting to trot up the stairs and OW, my chest starts hurting and I get short of breath. I am a little short of breath just being vertical. I am glad I am not bad enough to have to just lie in bed, that would fungking suck.

Hope you are well. Get the covid vaccine: it may well make you feel rotten, but covid 19 does the same thing only more so. I think that if I got covid 19 I would croak.

Ribbit.

Peace be with you.

The introverted thinker on the playground

My daughter is an introverted thinker. Sometimes this is extremely entertaining.

When she was in first grade she came home part way through the year and said, “I want to get my hair cut like a boy.” “Short?” I said. “Yes,” she said. I didn’t think about it too much but made an appointment. I thought it was because she has that fine tangly hair that is really difficult to comb.

On the way to the salon, my intuition kicked in and I realized that something was up. She was in that deep abstraction mode, thinking.
I said, “Why do you want to get your hair cut like a boy?”
Her reply, “The boys chase the girls on the playground.”
Hmmmm.
“Do they chase you?”
“No.”
“Why not?”
“They are not sure if I am a boy or a girl.”
“You don’t want them to be sure?”
“No.”
“Why not?”
“There is another class that gets to recess before us. They get the tire swing. They have a club that is all boys. They won’t let us use the tire swing.”
“You are going to fool them. Okay.” I sat back to see how she would proceed with whatever plan she had regarding the tire swing.

She had her hair cut very short. The next morning she chose hand-me-downs from her brother. A rugby shirt, a navy blue sweatshirt, flannel lined thick jeans and his old hiking boots. She had never worn any of them before and her usual preference was pink. I took her to school. She went into her class and just went to stand by some other children, not saying anything at all. They commented on her haircut.

I went to the principal and described my daughter’s plan, mostly because I thought it was quite brilliant. He said, “Oh, we have to do something about this.” I said, “I wasn’t trying to get anyone to interfere.” He said, “No, but we have a playground policy. They are allowed to have clubs, but they are not allowed to exclude anyone. In other words, no ‘boys only’ clubs. We will hold an assembly to remind them.”

So for a seven year old introverted thinker on the playground, a problem required careful thought and a plan, which she then carried out. I liked the approach of challenging gender. As far as I could tell it did not occur to her to ask for help. I do wonder at times what other plans she is implementing.

She did get to use the tire swing. Then she went back to wearing pink.

dream about privilege, access, and water

For the Ragtag Daily Prompt: dream.

I dream in technicolor with smells, sensations, sounds, all senses. So much so that sometimes I worry about what is happening in the dream and what I should do about it. Then I realize it is a dream.

Other times I know right away that it’s a dream. This one I knew was a dream and it’s closely connected to our reality.

This dream is from August 2018.

I am in a library. There is an archive. I am not allowed in the archive.

There is a man. He listens to me sometimes, but mostly he prefers that I listen to him. He listens less and less as time goes on. He is interested in certain topics, but he likes to do the talking. He doesn’t like or agree with my opinions and prefers that I am silent.

A woman arrives. She is very powerful. Dressed in white, robes, goddess like. She is as tall as the man. They talk and he goes into the archives with her. I am jealous and resigned. Not sexually, but I am just resigned to males coming first, more of them have access to the archives, they expect the attention first, they are rewarded for speaking up where I would be punished for the same behavior. I am sick of it.

I have a question for the woman. I wait. I am sitting on a tall stool with a long desk. There are two chairs to my left, empty, and people in the chairs to my right. There is a carved wooden screen walling the other side of the desk off: on the other side are the archives.

I have water. The water is in a bowl. It is to drink and is nourishing and refreshing and it is beautiful too, with herbs and an island of moss in the center. I have drunk enough, and wash my hands in the remaining water.

They come out of the archive. The woman sits by me and the man next to her. I ask my question when there is an opening. She is interested and will take me into the archives. The man is not interested in my questions, as usual, and he leaves. The woman asks for some of the water. I explain that I have washed my hands in it. More people are coming to talk to her. She pours some into her bowl. I am afraid she will be distracted by the people and drink it. I go to get her clean water. I need a pitcher. There is a wall of glass front cupboards with many sizes and shapes of glasses. I get down a large one, but it is very ornate and delicate. I want a plain pitcher but I also want to bring her the water right away. I hesitate, looking for something large and plain.

I wake up.




speaking up 4

For the Ragtag Daily Prompt: sequelae. We don’t know what the sequelae to the Supreme Court vote is yet. But I am not going to stop speaking up and I hope more women speak up. And girls. So here are two experiences when I was a girl.

I start grade school in upstate New York. I am at the Northeast School. I don’t remember tons about it, except that it has ramps instead of stairs. I am failing to learn to read with phonics, which make no sense to me.

In first grade, I need to go to the bathroom. My teacher gives me a hall pass. This is not a kindergarten privilege.

Outside the girls’ bathroom are two boys. They are older than me. I don’t know them.

“You can’t go in unless you show us your underwear.”

I am wearing a dress. I stare at them.

“Show us your underwear.”

I go back around the corner and wait. Hoping they will leave. They don’t.

I need to go. I go and lift my skirt for a second, humiliation as they laugh. I hurry in to the bathroom.

I go back to the classroom.

I never go to the bathroom during class again. I am careful. I go before class starts and at lunch.

And I’ve never told anyone until now. And this was a grade school. How were the boys acculturated to behave this way already in grade school? And does this still go on? All the girls in my daughter’s school quit wearing skirts by second grade. Jeans only.

We move before fourth grade to another town.

The boundaries for the school districts change before sixth grade and I am bussed to a new grade school.

On the bus, a boy starts harassing me. I don’t know him.

“Show me your underwear.” he says. The other kids are watching.

I don’t answer, glare at him with scorn.

Each day he escalates.

“Show me your underwear.”

I pull a pair out of my bag the fourth day. “There. Now you’ve seen some.”

The other kids laugh, but it’s not enough. He keeps hassling me.

He starts reaching for my skirt from the seat in front of me.

I’ve had it. I play flute. But I also play piccolo.

The next day he starts up, “Show me your underwear.” He reaches towards my skirt from the seat in front. I have my hard piccolo case in both hands. I smash his hand as hard as I can, against the bus seat.

He screams and pulls his hand away, clutching it.

The bus driver looks in the mirror. He doesn’t slow down or stop.

The boy never bothers me again. And neither does anyone else on that bus.

____________________________________

I took the photograph when school started this year. This is our “city” bus. The Redhawks are our football team. I can’t think that football is good for us, but I thank the adults for this support for the high school students…..

Music gives me hope: this.

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.

 

beer and the Supreme Court

I want to reblog this and ask: Mr. Kavanaugh, you drank alcohol as a teen. How do you feel about your daughters drinking alcohol as teens? Is this acceptable? Is this expected? Will you turn a blind eye? Or do you have a double standard? Can teen males drink but teen females are “asking for it” and are “bad girls” if they behave the same way?

This matters. I don’t want a Supreme Court Justice who thinks it is fine for either teen males or teen females to drink and use drugs. So, sir, speak up: what message are you sending to all teens in the United States?

https://therecoveringlegalist.com/2018/09/28/the-elephant-in-the-kavanaugh-hearing-room/

hope for change

I want us to have a culture where teens don’t drink to black out or to where they tell themselves that it’s ok to harm another person, where women are not punished for speaking up, where neither boys nor girls nor men nor women tolerate rape or domestic violence or discrimination or hatred.