Category Archives: hope

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Preparedness

I am at a friend’s: she doesn’t have matches.
I am at a friend’s: she doesn’t have bandaids.
“You need a tsunami kit,” I say. “Now!”

My daughter made a tsunami kit for college
with a life straw, an emergency blanket, ace wraps
and bandaids. A leatherwoman for tools with a knife.

Watching after the earthquake, it’s the crowbar I think of.
It is in my back yard, under the apple tree.
If we have our earthquake, I should be able to find it.

Or if I can’t, you know where it is now.
Please, take it to help someone
if I can’t.

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Spring?

It was cloudy most of the day yesterday. I went to the beach when the light was fading, so at 3 pm, and the sun was peering underneath the edge of the clouds. Groundhog Day, so does that mean we will only have five more weeks of winter? Or four? Or mixed with the sun peeking through?

I found my first moss agate, too.

For the Ragtag Daily Prompt: optimist.

This is not a short watch, but they are where I go when I am worrying.

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DIY FUD

I am Elwha, cat.

My mother has changed. For the first year she fed us many times a day, but now she is nefarious. She left for three weeks and a man came in daily. He fed us but less generously. She now feeds us twice a day and less than in the past.

I make offering to the gods in hopes of more food, that the gods will influence my mother and turn her good again.

I place the mouse effigy in my bowl. A mouse would be delicious and if alive it would be delightful fun as well! We watch the birds out the windows and long to catch them.

There is no response from Mother or the gods.

I try again.

Another mouse, a symbol of technology, that sponge that she removes fur from furniture. Mother seems to love technology and will not let me lie on the warm keyboard. She lets me have this technological marvel. I have chewed it but it is not nutritious and gives me nothing. There are wires inside. It is fun for play but not edible.

I will wait and hope that the gods influence my mother and that more food is forthcoming.

_____________________

For the Ragtag Daily Prompt: nefarious.

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Small hopes

Alone today and quiet, happy with it
“I think you write more than I do, even though
I write for a living.” “I love it,” I say.
It is my daily quiet writing time: four am.
No one is here but me and the cats
and they just ate and are grooming each other.
Just me and paper and pens and computer
still dark out and cold. I check to see if it is clear.
No, not today. I hope to see the green comet.
Little hopes, small ones, quiet ones, that do not
bother anyone. No one is jealous or wants to take them
away. I hold them warm in my heart, Beloved,
and do not think of love.

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For the Ragtag Daily Prompt: temptation.

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Peace Prompt

Today’s Ragtag Daily Prompt is prompt, because we need a seventh person. Sounds pretty easy, right? To pick a word once a week and post it and then watch the replies.

It is easy and it isn’t! That day sneaks up on me. Now I try to post the Tuesday prompt 5-7 days early and set it to post on Tuesday morning.

If another prompt is missing, I can check the Ragtag site. Sometimes a prompter is gone or has something happening in their life or has put 9 pm instead of 9 am! I can intervene and fix the last problem. We fill in for each other, too.

This is an international group and a prompt for peace! Peace us and join us! I love seeing photographs from all over the world. I am itching to go to Australia to see all the birds and to India and back to Alamosa, Colorado and in fact, I would go to any of the areas that people post from. With all of the stress from the pandemic and the ongoing war, this is a daily place that makes me hopeful that people can get along and that we will reach the point where the color of our skin matters no more than the color of our eyes. It is Martin Luther King Day in the US and I am celebrating peace and hope.

I heard a wonderful sermon yesterday from a man who works in our school system, here: https://www.youtube.com/watch?v=DfmPjcEIbBA. I went to a music jam which had wonderful diversity of music. I went to hear Chicago Bob play and I have to say that I did not expect him to play Teddy Bear’s Picnic. A friend came to dinner too.

I hope that you too have pockets of peace and can peace someone today. And hooray for this musician as well: https://www.bbc.com/culture/article/20230113-martin-luther-king-day-the-song-that-changed-the-us.

Blessings.

How many cats do you see in the photograph?

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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 β€œnerve” 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 β€œbrain”. 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.