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 Brewer’s Big Horses

This is one of the Songs to Raise Girls, songs that I learned before Kindergarten. A very weird list of songs.

This song comes from my maternal grandfather. My mother said that it was a Congregationalist temperance song….

The photograph is Morris D. Temple and his grandson, F. Temple Burling. F. Temple Burling is my maternal grandfather. I am related to Temple Pumps. According to my mother’s stories, Morris Temple was more interested in Japanese art than in Temple Pumps and the company eventually folded. I don’t know if that is true, or if it was a different Temple then Morris. However, my middle name is Temple.

This song is one that I don’t have memorized, though I know the tune. I have my mother’s handwritten lyrics, with her drawings framing it. There is a tape of my grandfather singing it in the Library of Congress, according to my mother. I would like to go listen to it some time.

I’ve copied it just how my mother wrote it out. There might be an issue about political correctness, but I have a picture of Morris Temple in the 1860s, in his civil war uniform, with a sword. You will have to wait for that post to see which side he fought for….. I presume that my mother wrote it down as she was taught it. I am not sure who talked like this in Iowa in the 1880s, but maybe it was most people.

The Brewers’ Big Horses

O, the brewer’s big horses, comin’ down de road
A totin’ along old Lucifer’s load
Dey step so high and dey step so free
But them big horses can’t run over me

Chorus:
O no! boys O no!
De turnpike’s free where ever I go
I’m a temperance ingine don’t you see
So them big horses can’t run ovah me
Repeat with “toot toot toots”

O de liquo’ men been actin lak de own de place
A livin’ off de sweat o’ de po’ man’s face
Dey’s fat and sassy as dey can be
But deir big horses can’t run ovah me

Chorus

I’ll harness dem horses to de temperance cart
I’ll hit ’em with the gad fo’ to give ’em a start
I’ll teach ’em how fo’ to haw an’ gee
So them big horses can’t run ovah me

Chorus

It took me a while to find this song on the internet. It is listed in temperance songs in wikipedia: https://en.wikipedia.org/wiki/Temperance_songs and is mentioned in The Christian Advocate under lyrics: The Brewers Big Horses. It is listed as written in 1913 by JB Herbert and HS Taylor. Isn’t it interesting that Budweiser still uses the Brewer’s Big Horses in advertising?

Again, this is a song I was learning way before I know what a brewer or a turnpike was. My parents stopped singing a bunch of songs when they realized that I was memorizing all of them. They did not want me singing certain songs in Kindergarten.

They did not need to worry. I shut up when I got to school, because no one wanted to sing and no one knew the songs. They all talked about television and we didn’t have one.

I was very disappointed in school. Not enough singing and it was lonely.

biotics explained

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Antibiotics: THESE KILL PROBIOTICS. BY THE MILLIONS. THESE ARE PASSE, OUT OF FASHION, EVIL AND YOU REALLY DON’T WANT THEM (unless you have strep throat or pneumonia or sepsis, and even then, the antibiotics suck because the sepsis mortality rate is 28-50%, THAT MEANS HALF THE SEPSIS VICTIMS DIE EVEN WITH ANTIBIOTICS, DOES THAT PROVE THEY SUCK OR WHAT?)

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Stages of Grief: anger

I am thinking of the songs that comfort me in grief.

And thinking about the stages of grief. Five, right? Denial, Bargaining, Anger, Grief and Acceptance. My sister said, “They left out Revenge and Acting Out. ” She died of cancer in 2012 at age 49. Six days after her birthday and the day after mine.

Anger songs for grief. But denial is first, right? Not necessarily. These are not stages you move through in a certain order. This is more like a spiral, where you go from one to the next and back to the start, from day to day or even hour to hour.

I’ve already written about My Name is Samuel Hall. That is an angry song, unrepentant, that my sister wanted the last time that I visited her. I knew that she was furious about dying and leaving her husband and daughter. And me and her friends.

My mother sang:

“Nobody loves me, everybody hates me, I think I’ll go eat worms. Big fat slimy ones, little tiny wiggly ones, see them wiggle and squirm. Bite their heads off, suck their guts out, throw the skins away. I don’t see how anyone can live on three meals of worms a day… without dessert….”

She also taught us this:

“I don’t want to play in your back yard
I don’t like you any more
You’ll be sorry when you see me
Sliding down my cellar door”

My parents had songs for every mood I can imagine. There were moods they would not speak about but they sang them.

My favorite angry groups are The Devil Makes Three, Hank Williams III, The Offspring, and Sweet Honey in the Rock.

Sweet Honey in the Rock? Yes. They sing about death a lot. This song is not about death: it’s about a “bad” woman, wanted dead or alive. But listen to the song: they are singing about a real event and a woman who fought back against a rape. On the thirty year album of Sweet Honey in the Rock, the group says that their first “hit” was this song, played by news stations. “It was a hint that we were not going to be top 40.” The song is Joanne Little.

So here are three songs by the others:

The Offspring: Why don’t you get a job?

The Devil Makes Three: All Hail

Hank Williams III: My Drinking Problem

And how do families show anger? They fight. They fight with each other. They fight about how someone should die, what should be done about mom, whether dad can live alone any more, about the right way to grieve. They fight about small things or big things and they even sue each other. Before you wade into the fray, step back. Remember, families grieving are always a little bit insane, very stressed and it’s all grief.

Hank Williams III: Country heroes

Blessings on the people I know in hospice right now and on their families and loved ones. Third one today. Sending love.