Category Archives: peace

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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.

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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.

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cereal mean stupidity

Some people act mean. Not only do they act mean but they are cereally mean. They are mean about cheerios, about count chocula, about granola, about oatmeal.

Not only do they act mean, and cereally mean, but stupidly mean.

They are stupidly mean because they heard that you like cheerios. It doesn’t matter if you actually do or don’t like cheerios. Someone told them that you like cheerios, they think cereal is sinful and you are LABELLED. They have you labelled as liking cheerios and you are a sinner.

And it doesn’t matter what you say or do. You can say “I don’t like cheerios.” Yeah, they don’t believe you. They think that maybe YOU EAT CHEERIOS when no one is looking, behind curtains, in the basement. They did a search on the internet and you bought Cheerios in 1997. You are a sinner.

You can show photos of your breakfast. “Look! Yohgurt and raspberries!” Doesn’t matter. They whisper, she eats cheerios in secret. You are still a sinner and you are a sinner and a liar.

You can be an upright citizen for years, join the Rotary, volunteer, donate money. Doesn’t matter. The whispers circle back to you: cereal.

So finally you figure it out: fungk them. You do not have time in your life for cereal mean stupidity. You put those people on ignore and leave them there. You cheerfully help if they have a flat tire or appendicitis. You commiserate when they complain that they are miserable. Well, actually, fungk that. Your goal if they call is: get off the phone. “I got a pan burning on the stove, I gotta go to the bathroom, I gotta trim my nosehairs…” Anything but talk to one of them. Because your life is a lot of fun, once you stop trying to change their minds.

And it doesn’t have to be cereal. It can be bipolar disorder or race or politics or the country you are from. Cereal mean stupidity is rather rampant. We have the choice to ignore it and live with more joy than ever.

Peace out.

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Covid 19 long term and PANDAS

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.

https://www.pandasppn.org/guidelines/
https://www.pandasppn.org/jcap2017/

The article about the three antibodies involved is in this section:
https://www.liebertpub.com/doi/full/10.1089/cap.2016.0148

“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 VHΒ±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.

https://www.sciencedirect.com/science/article/pii/S2666354619300158

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.

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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.

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Juxtaposition

The photograph in my Quimper Family Medicine home clinic and guest room is of my grandmother and my daughter, in 1988. I took the picture. My grandmother is Evelyn Ottaway. The other picture is one of my mother/baby or parent/child pictures. I like the juxtaposition.

It’s not just parent/child that is important. It is parent/child, grandparent/child, great grandparent/child.

I am reading a book that appeared in my little free library box, about grandmothering skills. It’s got some very interesting ideas and I am enjoying it! Radical, man.

My grandmother had amazing organizational skills. I think that my daughter got them from her.

For the Ragtag Daily Prompt: Radical.

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biotics explained

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Conbiotics: These are BAD FOR YOU! They are sold by the other companies. They lie. They get biotics from prisoners poop. They will turn you criminal. They will make you fight with your mother and disinherit your first born, lie, drink too much and cook meth. You will know they are conbiotics because they are cheaper and not refrigerated. And some of the biotics in their tablets are bacteria! Do you want to take bacteria? DEAD BACTERIA, they don’t even give you live ones.

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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early

Driving to work yesterday, I pulled over and took this photograph. It was so beautiful in the early morning.

Yesterday evening I walked downtown after work. Our local Kiwanis is working on a memorial for all those lost at sea. I started thinking and wondering if we have a memorial for those lost to drug addiction, lost to domestic violence, for lost innocence.

This photograph is for all those losses.

 

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young alone

I have a double lot, L shaped, because the 1930s garage extends 5 feet into the second lot.

I don’t mow the second lot. It is in the center of the block and has an apple tree, a plum tree, a maple with a tree house, wild roses and weeds.

The deer leave their young to stay. Intemittently there are young alone in my lot. I went to go in the tree house this weekend, but this small one was alone. I don’t like to scare them into the streets or more exposed yards, so I backed off.