Well, that’s the way it is.
The picture is from Lake Matinenda in Ontario.
Well, that’s the way it is.
The picture is from Lake Matinenda in Ontario.
is it really your business anyway?
who are you to be watching?
what are you doing with your life?
spending it as a voyeur?
if you spend all your time watching
thinking you know who is good
and who is evil
what are you contributing to humanity?
who elected you judge and jury?
sit in your castles
poke your telescope through the shades
seems boring to me
I’d rather fight for healthcare for all
I’d rather fight for local housing
I’d rather take in an elderly cat or a foster baby
or an elder whose apartment has been sold out from under them
what about you?
isn’t there ANYTHING
you’d rather do?
thanks to everything2.com for the title
Qia is in her first year of college, 1200 miles from home. She joins the ski team, hoping to ski. There really aren’t mountains in Wisconsin. They are hills. She doesn’t have a car so she has to get rides to the ski hill. She does get demo skis, because she is on the team. It’s mostly guys, a few women. The guys chug a beer at the top of each run. The runs are ice after the first time down. It is very poorly lit and very cold. Qia is afraid of the ice and the guys and the drinking.
At Christmas she goes home, to Virginia. She really wants ski pants, she tells her mother. She is cold. She is still skiing in spite of the drinking and the scary guys and the ice. They yell at her to go faster but she goes the speed where she will not die. It doesn’t matter anyhow. She goes to a formal race and they have three foot tall trophies for the boys and nothing, not even a ribbon, for the women.
At home, her father is laughing. He is giggling, silly. He doesn’t make any sense. He gives Qia the creeps. Her mother sails along like nothing is wrong. Qia’s little sister has gone from the extroverted life of the party to locked down so hard that her eyes are stones. Fungk, thinks Qia.
Her father loses his down jacket, leaving it somewhere. Then he borrows her mothers and loses it too. Qia’s sister has out grown hers. On Christmas morning there are two down jackets and a pair of ski pants.
The ski pants are two sizes too small. Her father laughs. The down jackets are the ugliest colors, cheaply made, junk. Qia watches her mother and sister try to smile.
Qia leaves the ski pants and returns to Wisconsin. She gets a spider bite. It spreads. She goes to the doctor. He gives a laugh of relief and says it is shingles. He has to explain what shingles is. “It either means you are very run down or have severe stress.” Qia laughs. Worst Christmas of her life so far.
She realizes the problem. Her father has been abducted by fairies and a changeling put in his place. She reads everything she can find about changelings. Adult changelings are rare but not unknown. She pulls out every stop on top of her heavy schedule to learn about how to fight fairies. She can’t afford to hire a fighter. She finds an iron sword at a second hand shop. She hangs around the gyms and watches the fairy fighters fight. She goes home and practices every move. She collects herbs.
She sets things up before spring break. She arrives home and asks her mother and sister to go with her to a specialist in changelings and fighting fairies. Qia is sad but confident. Her mother and sister both cry after watching the movie about the behavior of changelings. Qia asks her mother and sister to help her.
They both refuse.
Qia can’t understand it. But she has studied and read the books. She will do it alone.
She meets with her father. She tells him how awful and frightening Christmas was. She tells him how ashamed and scared she was. She reads him a letter that her sister wrote to her, emotionless, about having to watch him when he is curled in a fetal ball at the top of the stairs. Her mother asked her sister to watch him, so he wouldn’t hurt himself. Her sister says that she wanted to go out with her friends. Her sister is in tenth grade.
Her father doesn’t say a word.
Qia begs him to tell her the key. The word that will open the portal. She shows him the sword and lists all of her herbs and describes her training. She tells him that after she defeats the fairies he will go home and her real father will be returned. She says that she knows he isn’t happy here, with mortals.
He doesn’t say a word to her for the rest of spring break. Her mother and sister do not say a word about it either. Her father drinks more heavily. Qia returns to college.
Qia refuses to come home for the summer. She stays in Wisconsin. She does not want to be around any of them.
Her sister is three years younger. Qia wishes that she could scoop her up and take her to Wisconsin. Qia frets and is in pain. Qia’s second year starts and her sister is in eleventh grade.
Qia’s mother calls. Qia’s sister is on her way. 3000 miles away. “At the last minute, C invited her to live with them in Seattle.” says Qia’s mother. “C was leaving the next day. Your sister decided and went with her. It’s a relief because your sister was getting A’s on tests but refusing to turn in homework, so overall she was getting D’s. ” Qia is relieved. C and S have a son named after her father. He is younger than her sister. Qia also has a cousin 6 years older who lived with C and S and still lives in Seattle. Qia wishes her little sister the best.
Years later, after her mother has died, Qia asks her father about it. By now her father is back and the changeling is gone. I was angry, says her father. But your sister was getting into lots of trouble. Really bad trouble. What could I do, locked in fairyland. He does not go into what Qia’s sister was doing.
And after her father dies, Qia finds a letter. The letter is from C to her mother. It is talking about her sister going to live with C and S. My mother lied to me, thinks Qia. I am not surprised. I wonder why she lied to me. Qia thinks it is probably because her mother set it up with C and did not tell her sister. Qia thinks that her mother lied to her sister. Qia thinks how much that would have hurt her sister: that her mother chose the changeling over her. Her sister would have been terribly hurt and angry.
But so many are dead, what does it matter? Qia’s mother is dead. Her father is dead. Her sister is dead. C’s son is longest dead. S is dead. Even the changeling is dead. Friends in fairyland let Qia know. Actually, Qia and C are the only ones left living.
C did not lie to Qia or her sister directly. She let Qia’s mother do the lying.
Qia does not talk to C again.
Qia is tired of liars.
This is not a story about fairies. It is about alcohol or any addiction. We must support families, because the whole family becomes ill. Triangulation, lies, competition, enabling. In my maternal family, the enablers die before the enablees. I have chosen to leave the system and I refuse to be either an enabler or enablee. If you are in that sort of system, you may find that the family resists you leaving and tries to draw you back in to it. When you do finally succeed in leaving, there will be a strong reaction. When the pirahnas run out of food, they eat each other. Stand back and don’t get drawn back in. The newest victim will need to make their own decision to stay or leave.
Ok, I got this picture off Facebutt. I CONFESS. But I really want a doctor kit like this: so I can practice alternative medicine. I am disabled from Family Practice and I have to apply for disability payments (miles of paperwork) and I hear that even as a contractee I can apply for unemployment (miles more paperwork) and I see my hospital bill on line for the ER visit where I had chest pain and shortness of breath and the ER doc didn’t even give me an aspirin, so I want to know why I should pay them $900 and I am going to apply for reduced payments because last year I made 42 K, less then the nurses at Jefferson Healthcare (EVEN MORE PAPERWORK FOR THE REDUCED PAYMENTS) and really, it all sounds rather exhausting and I’d rather let the paranoia rise and hide under the bed. Where the OCD and ADHD will make me arrange the dust bunnies and dust elephants by size.
So this looks like a great doctor kit. If the patient sees me and doesn’t do a darn thing that I say, I shoot them with the gun in the forehead. If they do a little but not really very much, I set up the bowling pins and shoot them with the gun while I talk about how irritating it is to have patients use MY TAX DOLLARS though MEDICARE MEDICAID ACTIVE MILITARY DUTY AND THE VETERANS ADMINISTRATION NOT TO MENTION SOCIAL SECURITY DISABILITY to get advice and not follow it.
If they are merely disrespectful and tell me what Dr. Google says, I say “Duck.” and throw one at them. If they say, “I don’t take any farmasuiticals.” and bring a bag with the 12 supplement and vitamin pills they take daily, I give them the plastic pills to replace all their stupid supplements. “Here, take this. If it doesn’t work, I have suppositories, but they are four times this size so some people complain that they are uncomfortable.”
I am not sure WHAT the thing in the lower right corner is. A hair dryer? A fentenyl lollipop? Part of an old fashioned telephone?
Anyhow, someone find me one of these kits and send it to me. Pretty please. I am not allowed to do Family Medicine any more and really want to get started on Alternative Medicine.
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.
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.
I think you said
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.
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
No one except
and my children
and all children.
Only they are allowed inside.
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,
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.
And this should connect to this: https://drkottaway.com/2014/11/
It is not looking like I will be able to return to medicine. Based on the current research, the PANDAS reaction will get worse with each infection. I will be moving in to a hamster ball next week, (*&^*&(*&*&^.
You, gentle reader, can work your way through the research, which I am going to present to you. You have no reason to do this unless you have chronic fatigue, fibromyalgia or myalgic encephalopathy or post covid syndrome. Or you know someone with one of those. I think there are a few people out there.
First, read the guidelines for treating PANS/PANDAS.
The article about the three antibodies involved is in this section:
“Evidence for group A Streptococcus (GAS)-specific cross-reactive antibodies having affinity for neuronal components (including receptors) in the basal ganglia has been demonstrated in human and animal studies (Husby et al. 1976; Kirvan et al. 2003, 2006a, 2006b, 2007; Hoffman et al. 2004; Yaddanapudi et al. 2010; Brimberg et al. 2012; Lotan et al. 2014). Sera and immunoglobulin G (IgG) from SC and PANDAS patients known to bind to components of the GAS cell wall have also been shown to cross-react with components of neurons in the basal ganglia caudate, putamen, and internal segment of the globus pallidus (Kirvan et al. 2006b). Antineuronal IgG antibodies binding to multiple targets, including lysoganglioside, tubulin, and dopamine receptors, have been reported to be elevated in patients with SC and PANDAS compared to controls (Kirvan et al. 2003, 2006a, 2006b, 2007; Cox et al. 2013, 2015). Targeting of such antibodies to dopaminergic neurons in the substantia nigra and ventral tegmental area in the basal ganglia (as well as other cortical neurons) was confirmed in transgenic mice expressing a chimeric antineuronal autoantibody containing VH±VL regions cloned from a patient with SC (Cox et al. 2013).”
All right, three antibodies. So WHAT, doctor?
The antibodies are to dopamine, tubulin and lysoganglioside.
Here is an article looking at chronic lyme disease.
Basically that article looks at four groups. No lyme disease, one episode, more than one and chronic. No dopamine antibodies. But the tubulin and lysoganglioside antibodies are not present in the healthy folks and are present in the lyme folks, highest in the chronic lyme. Those two antibodies are associated with chronic fatigue (the tubulin) and fibromyalgia/gluten and sugar intolerance (the lysoganglioside).
Now wrap your head around that one in ten severe infections can trigger chronic fatigue. ANY INFECTION. I am normal, I just bloody well got antibodies early because my mother had tuberculosis through the whole pregnancy. So I was born with PANS. Then, smartied that I am, I chose to be a physician, meaning I get exposed to infections. Guess I am not going to be doing Doctors Without Borders, right?
Treatment, well, that is complicated. I think it depends on the person’s profile: which antibody is giving them the most trouble. I am a special case, because I have all of the antibodies firing full bore at once. Which has forced me to be extremely creative about how to survive this now and in the past.
First off for the treatment: DO NOT PUSH THE CHRONIC FATIGUE. Because the tubulin is damaging not just skeletal muscles but the heart muscle as well. So even with squeaky clean coronary arteries, pushing through the chronic fatigue could trigger a heart attack or broken heart syndrome. And we aren’t (yet) measuring these antibodies routinely. Hell, I hadn’t heard of tubulin since the distant mists of college until 2 weeks ago.
Secondly: if there are neurological symptoms, that is, any two or more of manic/word finding difficulty/ADHD/OCD/emotional lability/oppositional defiance/clingy/brain fog/yeah I forget the rest, then the anti-dopamine antibodies are present. In addition to speeding the thoughts, I think that they speed cell metabolism. I always drop ten pounds the first week. So, vitamins are vital. If your vitamin K drops, you may clot. Also vitamin D for teeth and vitamin B12 — if it’s low you can get Guillain Barre. The myelin sheaths unwind. Ok, that could also be thiamine or folate or all three. Bleeding strokes from low vitamin K.
Third: I don’t know if it’s just me, but the things I have to change in my diet are NO SUGAR and NO GLUTEN. I tried rice yesterday and it was ok, so I think it’s gluten and not just all bread/rice/potatoes/pasta. I have mostly been eating meat or cheese with kale/collards/mustard greens/parsley or turnip greens. All of which are vitamin rich. I have not had bread in three weeks and have been not even eating much fruit. Blueberries and grapefruit are safest. In two of my bouts of this, with strep A pneumonia, I would have fluid shifts when I ate sugar or gluten. Normal urine output is up to 2 liters. I had 10. That was documented in a 24 hour inpatient observation, though the doc did not actually notice. I did. I also figured out how to get it to stop, by stopping carbohydrates as much as possible. Greens only, because they are food sources of vitamin K. At any rate, it’s worth a try for other people. I use electrolyte tabs with fluids too, NUNN tabs or Airborne.
There’s other stuff. But I am tired and my chest hurts. Take care of yourself and each other.
I put the lights on my fence two days ago, for a friend who has cancer.
The neighborhood is probably puzzled. Heart and f? What does that mean? He fart?
Anyhow, I am thinking of her.
Now I need a timer, because I don’t like leaving it on all night and I currently fall asleep at 8 pm most of the time.
I feel despair
when I try
to think about the new schedule
Twenty four slots
Of 20 minutes
See three people
For 40 minutes
Twenty on the schedule
Wake me on Sunday morning
If I am called to a labor patient
Must I make up that clinic face time?
What of holidays?
The clinic is closed.
Night call is nowhere addressed
Will they hire more and more
Who don’t take call
Until I am the last woman standing
Red rimmed eyes staring
Numb with fatigue
What of my nearly deaf patient
Who reads lips
May we take forty minutes?
All the fairly deaf elderly?
New parents, anxious
Questions pour out like
Coins from a jackpot win
What of the tearful brokenhearted
I shrink at the thought
Of crushing their hearts
Into twenty minutes
And what if I’m sick?
(sick leave & vacation all one)
It’s not a holiday if I’m on call
No make-up day off
If I cancel clinic
Do I make up those days
A quota of patient face days
I am in the factory
People are the shirts I must sew
The tons of coal I must load
I must meet a quota
Doctors die younger
Our life is measured out
I won’t let the quota
Kill my love
Donald on Dining in and Out.
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