Category Archives: sister

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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.

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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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Pandas and the toughest yarn

After my sister died, I eventually got a box from her home.

People were cleaning it out. My cousin Ko, my friend Caroline, other friends.

Among other things, they sent part of her yarn stash.

What they sent me was the very very fine yarn and the fuzzy yarn. The mohair.

Oh gosh, I thought, they sent me the toughest yarn.

Well, as part of the dealing with the ADHD/OCD antibody annoyance, which makes me wired while the OTHER antibodies make me physically not able to do much, what am I doing?

Sorting my yarn stash, for one. I have a LOT of that lovely fuzzy soft superfine mohair and other superfine yarns. It is tricky to work with because the fine needles are hard on the hands and because if you screw up, it’s hard to take it out. I know some of the tricks: freezing the sweater is one. It makes it easier for the fibers to untangle.

I’ve also been sorting the knitting books and magazines. I have more books. My mother gave me a whole hardcover book on edges and casting on. I’ve used it twice so far. But now I am home, buzzing with antibodies (yeah, sometimes it feels like ants or bees or pins. On the inside.) and so: knit.

And lo, I find this book. Fine knitting. It even has a mohair t-shirt pattern! Awesome, I am going to be knitting up some of my sister’s mohair. Wonderful. I think she’d approve. Also, I plan to be just as glam and sultry as the woman on the cover, heh.

I think I’ll submit this to the Ragtag Daily Prompt: Country Comfort.

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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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Bad Pig

This is Bad Pig. She is helping with the computer.

Bad Pig was born, or made, in 1982 or 1983. I made her in college. She is constructed of a coat hanger, a cardboard tube and some stuffing and then I found fabric to cover her. I used post earrings for eyes, because that is what I had on hand. They are rather nice earrings. Her tail curls around so that she can sit on your shoulder like Anne McCaffrey’s fire lizards. I made her for a convention of some sort. Fantasy, I think.

Anyhow, I gave Bad Pig to my sister Chris. She was not named Bad Pig at that time. I don’t know what Chris named her. But she continued with Chris through multiple moves. When my sister was in hospice, I asked if I could take Bad Pig back home with me. Chris said yes. Later Chris asked me to keep the bad pigs from harming anyone else. I was not exactly sure what she meant, but I said yes.

On the way home, I named the dragon Bad Pig and explained that I didn’t want her to harm anyone. Let the past be the past and bygones be bygones. I am not sure exactly what the details of Bad Pigdom were, but it’s the future I am concerned with.

Bad Pig has been in the living room on the book shelf since coming back to Washington. Currently she is helping out with the computer. I tell her when the computer is considering being unhelpful and Bad Pig then considers breathing fire on it. However, the computer straightens up at that point, so she doesn’t have to.

My sister was born in the Chinese year of the dragon. In hospice she said, “How will I find you?”

I said, “You are a dragon. You are letting me take the dragon I made you home. You will be able to fly. All you have to do is find the dragon and you will find me.”

So it is very comforting to have her so close.

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leaf light

Well.

Being off from work, for an indeterminate time gives one time to think.

I have been advised by various people to move. Pick up, sort out, get rid of and move on.

I think they are right. I have been in this house for 21 years. Time to change it.

So, I am going through things. Washing everything washable. There is a lot of that. Starting to sort and give away things. I sent a unicorn horn and ears and a tail and tiger ears and tail to a five year old a couple days ago. She can be a unicorn or a tiger or a ticorn or a uniger. And rope the adults in.

Photos now. I could have a ginormous bonfire of old photos. It’s ok to get rid of the ones that have no remaining connection, right? I may give them to friends to cut up and use in art, that’s cool. I will keep the connected ones.

I took the leaf light picture with my phone yesterday evening. Crashed early.

Hugs, all.

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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

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Deep Vein Thrombosis

Our clinic had a band back before 2009. Me and 4 of the nurses. We were into heavy metal. This was when I was working for Port Townsend Family Physicians. The county let me go and PTFP changed their name. Could not have been because we wore our band regalia to work, right? After all, it was Halloween.

Maybe they were afraid that the songs would catch on.

Little blue pill

Don’t code in the waiting room

Evidence based BM

Probiotics make you psychotic

Better that way

Alcohol is better than benzos

Mr. Sable is Unable

Buprenorphine: better n morphine

EMR means Eat My Rear

The 18 Patient Blues

Idaho Gigolo

I played flute and saw. J played fiddle and air siren. The others, well, you should ask them. I think all the tapes got burned by the hospital. Too bad, so sad.

I can’t credit the photographer. I don’t know who took it.

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tracery

For the Ragtag Daily Prompt: tracery.

This is the dream that wakes me this morning. Before I went to sleep last night I asked for a dream. It’s when I am writing the dream out this morning that I realize that it’s my sister’s birthday. She died of cancer in 2012. Memory and dreams as tracery.

I am in a group of people on a platform. It is dark around us. It reminds me of a platform from a ropes course. In the ropes course we had to balance it. A rectangular platform on a log roller, held somewhat at the corners to keep it from dumping us entirely. A group version of a balance board. The trick is really that everyone has to stand still and only one person moves, very small amounts, until it is balanced.

But we are dancing in the dream. We are dancing, but people are uncomfortable. I am not sure why. Perhaps because we were dancing all together but individually and now there is a couple dancing. I realize that people are halting, worried.

I want them to be comfortable. I gesture to an older man. He comes towards me. His wife is there. He and I start dancing but I realize right away that this doesn’t make people more comfortable. They are less comfortable and even the other couple dancing stops. We are lit from above with darkness all around. No spot light follows us, so we move in and out of the light.

As soon as I realize that nearly everyone is uncomfortable, I stop my partner. He is an excellent dancer but that is not what is important here. I move with him back towards his wife and I sit on the platform. They sit as well. The other people around us relax. That is what they want, to sit, to talk quietly, to listen. That is what will make everyone comfortable. The others are settling around us, relieved.

I wake up.