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.

Ottaway back porch

My parents’ time warp Beatnik household, 1978, before I went to be an exchange student in Denmark.

We had a German exchange student living with us. She had been placed with a couple with no children, a military family, and was unhappy. My parents agreed that she could move in with us for the rest of her year. I decided to apply as an exchange student. I have not heard from her in years. Blessings, where ever she is.

happy sister

I am home sick and it looks like it will be a long haul. Months. Sigh.

Anyhow, I am going through photos and found this. I do not know who took it, I don’t think it was me. I have my parents’ photos and they had my maternal grandparents’ photos, or at least it seems like it. Anyhow, I am floating in a sea of pictures.

I love this one. She is so happy.

Hope you are that happy now, sisty.

Music: William Prince

Mother/child art

The photograph is me and my younger sister on our mother’s lap.

I have a collection of mother/child art. I think it’s because I was born in a tuberculosis sanatorium, because my mother coughed blood at eight months pregnant, and I had to be passed around while she got well. I went back to her at nine months. I acted pretty independent at that point and was not very trusting of adults.

I am taking photographs of the mother/child art for this part of my blog.

I can’t attribute this photograph. I don’t know who took it. Both of my parents and my sister are dead, so I cannot ask.

It might have been my grandfather, but I don’t know.

copyright

For the Ragtag Daily Prompt: copyright.

This is my sister being a goofball on Christmas morning in 2010. The puppet was a family gift that we all played with. The Christmas hat is mine. This was after her cancer recurred: she died in March of 2012.

My sister wrote on line. She wrote at everything2.com and a blog: http://e2grundoon.blogspot.com/.

After she died, the people who write on everything2 were notified that another blogger had stolen multiple write ups and posted them on a blog as their own writing. That is a violation of copyright. And it feels particularly painful when it is my sister’s writing, who is dead at 49 from cancer. I do not think nice thoughts about the thief and I hope that the person regrets and makes penance for what they did. Hundreds of write ups were stolen from all sorts of people.

That is what the word copyright brings up. Don’t steal. Don’t steal my work or photographs or my sister’s or anyone else’s….

separation

This is one of the most beautiful and saddest photographs I have taken. It is my sister, about a month before she died of cancer. And her daughter, who was 13.

_______________________________

On the last visit to my sister, she was in kidney failure, dying. We had conversations that were surreal. All I wanted was to stay with her.

One day a friend of hers, another mother and I, were working to make her more comfortable.

“I am sad!” my sister said, and started crying.

“Why are you sad?” I said, “What are you sad about?”

“I won’t be there! I won’t be there when she graduates from high school! I won’t be there for her first date! I won’t be there when she gets married! I don’t want to die!”

By now we are all crying. “You will be there!” I say. I am certain. “You won’t be in this form. You will be in another form!”

“I will?” my sister said, crying.

“Yes.” I said, crying too. “You have to go. You have to transform. You can’t stay. But you will be there for her.”

We cried and held her.

And I know for certain that she is there, she is here, she is with her daughter as her daughter graduates from high school, goes on a date, does all the things that daughters do.

Now and forever.

And the living children must be returned to the living parents. We cannot do otherwise and call ourselves humans.