Disorientation

Oooo, I put orientation up as the Ragtag Daily Prompt today. Then I wondered if disorientation is a word and it is! A mouthful!

This is a series of poems or meditations or arguments I had with myself last week. I was thinking about love and how to handle people that I love that have stopped behaving in a loving way or have actually been cruel or cut me off. Do I stop loving them and hate them? Do I love them anyhow? What would that love open me to? Abuse? It is disorienting to think about. Here is the series.

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The Fall

I am small. The adults love me and give me away. I grieve each time. It doesn’t matter if I behave well or not: they leave me. I decide that the adults are confused. They do not know how to love. Why don’t they know? I want to understand! Babies should be loved! We are innocent!

All babies should be loved and protected. I do, with my sister. The adults continue their mysterious crazy doings. I recognize that alcohol does not help, nor other choices.

All babies should be loved and protected. All adults were babies once. Sometimes they were not loved and protected and they are damaged. I train and then I doctor them. Healing is slow.

All babies should be loved and protected. All adults were babies once. All adults hold a baby that should be loved and protected: themselves. I try for a long time.

All babies should be loved and protected. All adults were babies once. Each adult makes their own choices, to heal or not. To grow or not. To love themselves and the Beloved or not.

All babies should be loved and protected. All adults make choices. The Beloved loves them all.

I am not the Beloved. Nor an angel. I dream of falling.

I am not the Beloved. I let go. I fall.

I do not love them all.

Rise

Yesterday I fell. I let myself dislike four people that I loved.

But no, I choose not. Angels fall and rise again. I choose love. If that means distance, then I choose distance. For now I will love the cruel ones from a distance. No contact.

The Buddhas laugh at the needy ones, the angry ones, the ones who press. Some will be enlightened, some wait for the next life. The Buddhas laugh because they do not control it. It may be the quiet one who says nothing who rises, while one who wants and wants and wants may have to want for longer. Why, Beloved? Isn’t wanting you enough? Isn’t longing enough? How much must one want? How deeply must one long?

I choose love.

Prayer to Kwan Yin

Kwan Yin, I am sorry. I cannot be a Bodhisattva. I am tired. I grieve. I want to love everyone. They hate it. If I love the small child within they are reminded of the hidden hurts and they lash out. I am tired. I don’t want to be the target of that. Kwan Yin, how to do you return and return again, loving these? I am not strong enough. I give up. I throw myself on your mercy, I bow to your infinite love and strength, I abase myself. Forgive me, I am not strong enough. I give up. I do not have enough love in my heart and I am so tired.

Beloved, I am sorry. I tried.

Every Being (Sonnet 9)

Keep the cruel ones at a distance far.
Hold your enemies close in love’s embrace.
None to hate, yet cruelty glints like stars.
I hide quiet with cats in this home space.
My heart opens like the universe.
Projections batter me from head to toe.
Why tear at me with their deep hurts?
They project their pain: inside they know.
They know, don’t know, choose not to learn.
Dark rooms and texts and staring at the screen.
My skin scalded, heart black with new burns.
I think they’d like me too to turn out mean.
I will hide here with Beloved’s dove.
Each tear I cry sends every being love.

In spite of want

Sol set in my heart and rises again. I can love whoever I want. There are no boundaries to love. But I will not be abused or used, I will love quietly and silently and without letting my love know. And I will love who I want. No, I will love in spite of want, though I do not want to, though it is not deserved. But I honor my stubborn heart that does not let go of love.

Blessings, Beloved.

National Bird

“Hey Martha! Look, she’s got a real camera! Serious zoom lens on that baby!”

“Ralph, look dignified!”

“Dignified! Are you kidding?”

“Ralph, we are the National Bird! Bald Eagles! Look proud! Like me!”

“Nah, Martha, I’m crossing my eyes. She’ll get a surprise when she downloads THESE photos! Come on, Martha, mug for once!”

“Ralph, you are impossible!”


For the Ragtag Daily Prompt: mischief.

Spam hater: Covid test email spam

The latest spam email I have gotten is “to order Covid-19 tests”. WATCH OUT FOR THAT ONE! I am sending hate thoughts to whoever sent that one out, predators trying to get information or lock up the computers of vulnerable people.

The clue for me is the email address of the sender. If I hover over the address and get a string of weird things, it is spam. I am fast at deleting it now.

Old fashioned and very strong curses against the people sending out this spam.

Here is the correct link for ordering tests: https://special.usps.com/testkits

Or if you would prefer, search (or google) USPS covid test kits. Make sure you do not click on advertisements but go to the real site!

Blessings all.

PANS/PANDAS and diet

I have been thinking about PANS and diet.

When I am sick with pneumonia, I have to keep my carbohydrate intake as low as possible, or I get much much worse. I am attributing this to the lysoganglioside antibody. I have been puzzling about the lysogangilosides because a conference last year says that in some children with PANS/PANDAS, the antibodies cross the blood brain barrier and then macrophages appear to be killing ganglion brain cells. They described a truly awful case. I completely understand children refusing to eat or only eating one or two things when they are having a flare. And everyone may have different food issues because we all make different antibodies. This makes it darned tricky to sort out.

But back to ganglion cells. These are the “nerve” cells. They make up the brain but there are also nerve cells all over the body. And more recently we have started calling the gut, the digestive system, as second “brain”. This is because the gut turns out to have tons of ganglion cells.

So, my lysoganglioside antibodies do not appear to attack my brain. But something attacks my gut. It could be any or all of the antibodies, actually. Ganglion cells in the gut would have receptors for dopamine, the gut has smooth muscle that is powered by tubulin and my understanding of lysogangliosides is that they clean up dead or damaged ganglion cells and should not bother healthy ones. Studies of patients with lyme disease are showing the same four antibodies with a rising baseline for people who have more infections, so my guess is that my baseline has risen enough that I do not tolerate gluten. I may try it again, because my good news is that my muscles feel normal again. No more tubulin blocking antibodies, so I have fast twitch muscles again. They are weak but functional. I am starting to exercise them. Hoorah! If I am super lucky, whichever antibody screws up gluten for me has also dropped, but it may not have. The antibodies do not all do the same thing at the same time. This flare started for me when I had my influenza vaccine and then 5 days later, my fourth Covid-19 vaccine. The shots SHOULD get an antibody response but it was annoying to have the muscle dysfunction again. I managed to avoid getting pneumonia, so the response is shortened, about two months. I had very little of the dopamine 1 and 2 effects, so it was a relatively mild effect. The annoying bit was that I was improving in exercise at pulmonary rehab and the vaccines knocked me back down.

When I have pneumonia, eating carbohydrates makes my breathing worse. That’s weird. Well, not really. This fourth go around I realized that I could mitigate the effect of rising blood sugar as I improved by drinking bicarb with each meal. Sodium bicarbonate, baking soda in water. Why did that help?

Bicarbonate is a base. If it helped the symptoms, then it was balancing out an acid. Rising blood sugar was making me acidotic. When we are acidotic, our bodies will try to increase bicarbonate by speeding our breathing. If I have pneumonia and am hypoxic anyhow, then additional pressure on breathing is definitely not a good thing. So adding a glass of water with a teaspoon of baking soda reduced the acidosis. Then food did not affect my breathing.

Would this help all children with a pandas flare? Again, everyone has different antibodies, so the answer is probably NO. I think it is enormously important to listen to children with a PANDAS/PANS flare and give them an assortment of simple foods to choose from. No pressure for a balanced diet at the height of a flare, because some food or food group may make them feel terribly ill and actually may affect their acid/base balance and MAKE them more ill. I would offer something mostly fat: avocado or bacon or a high fat salami or cheese. Some steamed or raw vegetables, ranging from the high carbohydrate to low. Peas are high, kale is low. No sauces or dressing. Some protein sources, chicken breast or meat or beans. A grain or grain source. Offer fruit but do not push. Let the child figure out what they can eat and roll with it. Try to find more things in that food group. Remember that the main food groups are fats, proteins and carbohydrates. There are a bunch of different carbohydrates, which are sugars. Glucose, fructose (in fruit and corn syrup), lactose (in dairy), maltose, dextrose and others. I would avoid junk food and anything prepared. When I am sick I do fine with lactose, but all of the other carbohydrates make me feel very very ill and mess up my breathing. This is individual and will differ from person to person. If eating makes you feel very very ill, it’s easy to understand why some children stop eating. The obsessive compulsive traits are understandable too: if you suddenly don’t tolerate the foods you love and you do not understand what is happening (and your adults don’t either), you might try to behave in ways to bring back the good old days. Do everything the one right way and maybe things will return to normal. It’s a terrifying illness for children and for parents, but I have hope that my experience will help other people.

Blessings.

swamp robin

I took this in my front yard two days ago. They are called swamp robins here, but another name is varied thrush. I have never seen one in my yard before and there was a pair! I think I saw a fox sparrow as well, who are large, red brown and have lots of spots on the breast.

If it was a sunny day, the colors would be brighter, but you can see the blue and orange and black! Very dramatic! I need my kodachrome! It would also help to not be shooting through a window, a storm, in clouds. Oh, well.

For the Ragtag Daily Prompt: chrome.

Hopes rise

Our Christmas plans are busily crashing and burning. I felt ill and tested covid positive two days before my daughter was due from her city. ALERT, ALERT, DIVERT! I called friends who agreed to pick her up at the airport and let her stay for the five days of isolation. I stay out of the car so the germs will die. I call her after her work on Friday. She takes it calmly and calls a friend to pick her up. I miss her, darn it, but well, I am not on a ventilator or dead. Doing well, right?

She stays with her friend. She plans to join me yesterday but then snow. School is canceled. She and her friend sensibly leave my car at the entrance to the ridge road the friend lives on. She has to use the chains anyhow because someone has slithered off the road right in front of my car. Still grateful, because they did not hit my car.

She makes it to my house, chains on. She heads downtown to Christmas shop but the store she wants is closed. I ordered her a present that needs to be picked up, but the pick up is Tuesday to Saturday. They don’t list a phone. I ordered it on Sunday and they had emailed “Pick up now” even though it’s not “open” on Sunday. I email back, “Can’t, covid!” Now I email again and say would they contact my daughter or me so she can pick up. They do, but well after she is home. Still grateful, because they are open today. Maybe we’ll get it!

My daughter has been looking forward to time with friends but the snow has screwed this up. Maybe to time with mom, too, but mom has Covid. I am eating upstairs, she is eating in the basement, and same with sleeping. We are both masking and everyone is sick of that. It’s cold outside and the band she wants to dance to cancels. She misses meeting a friend downtown because of chains and needing gasoline. I am still grateful. Not dead yet, right?

Now I have email from our flight saying, well, maybe we’ll go. We are supposed to fly later this week. It looks like the big storm will hit Chicago and Buffalo and Boston. Cross fingers as we head for Dulles. Might make it. We discuss going to Sea-Tac a day early but that would mean sleeping in the same hotel room and no, we aren’t going to do that. Friends say they CAN get us to the airport. Super grateful for those friends!

When things are going all awry and life seems like rather a mess, we do Happy Things. That is a check in at the end of the day where we list three Happy Things each. My son was having a miserable half way through the year first grade move when we started this. The thing is, they do not have to be VERY happy. They can be more along the lines of “No one has poured boiling oil over me today.” or “Not dead yet.” It’s complaining reframed and it can be very very funny. In first grade one of his Happy Things was “We did not have the pizza that tastes like cardboard for school lunch today.”

So my Happy Things yesterday were: “I am not on a ventilator! I am not dead! We have super nice friends who will take us two hours to the airport!” If you start low enough on the Happy Things scale, there is no where to go but up.

And a Happy Thing for today: “I think the sun will rise!”

Happy Solstice.

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The photograph is Emerald, one of the Anna’s Hummingbirds, all fluffed up in the cold and guarding her feeder. There is a bird photobombing the background. I think it is a song sparrow but it was very early and the light is not great.

For the Ragtag Daily Prompt: rise.