Tag Archives: water

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Clouds are my favorite blur

Clouds two days ago on the Fort Worden Beach. Washington State.

I was back east over the winter holidays. Nine days got added on for an ill friend. I was lucky to be able to change my flight and be able to help. This is the early morning holiday lights on the way to the hospital.

Clouds further blurred by water. Taken in Ontario, Canada in 2012.

Water blur study. Somewhere in Washington.

More water.

Sunrise, a new day, blurry but beautiful anyhow. Mount Tahoma, Washington State.

For the Ragtag Daily Prompt: blur.

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Home sky

The Ragtag Daily Prompt is limit, as in the sky’s the limit!

I was traveling for longer than I expected, 19 days, and got home this week. Yesterday was the first day I went for a beach walk in a month!

The sky was absolutely beautiful with the sun breaking through.

There was a pale delicate rainbow.

I did not find a clear agate, but there are wonderful rocks.

I think this is a juvenile bald eagle, just hanging in the air and enjoying the sky!

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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.

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Release the Kraken!

I chose measly for the Ragtag Daily Prompt because there is a measles outbreak. Great. Another outbreak? Yes. Parents are behind on bringing kids in for Well Child Checks and kids are behind on immunizations, so measles.

Measles is way more infectious than Covid-19 and is spread by coughing and droplets. Per the CDC: “Measles is one of the most contagious diseases. Measles is so contagious that if one person has it, up to 90% of the people close to that person who are not immune will also become infected.” Read here. Immunizations are at 18 months and age 4-6, two shots. That will make the vast majority of children immune but not quite all. No immunization reaches quite 100%. Measles unfortunately can have some awful and serious complications including death. If your child is behind, get them immunized as soon as possible!

If some has the measles, the rash, they are measly. That is one of the definitions of measly.

Measly weasely
You are so teasely
Your heart has a rash
Our friendship is hash
You toss me like trash
Your heart just smashed
You are so measly
Weasely teasely

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I keep wondering if the earth is annoyed at the way people are behaving. Perhaps she has said, β€œRelease the Kraken!” But the most efficient Kraken turns out not to be a giant monster attacking New York City, but Covid-19, influenza, measles and strep A. Invasive strep A is out there too. Having had strep A pneumonia and borderline sepsis twice, I very much do not want invasive strep A.

It’s the little things that get us, right? Viruses, bacteria. Measles is a virus, like influenza and Covid-19. Strep A is a bacteria. I had very bad influenza in 2003 that put me out for two months. I read about influenza and thought, oh, we will have another pandemic and in fact we were overdue. They come about every fifty years. My children heard quite a bit about it. My daughter said she wondered if I was a little nuts until the ebola outbreak and then she decided that I was probably and unfortunately correct. The only surprise for me was that it was a coronavirus instead of influenza. That and that humans behave in very interesting and often dysfunctional ways when they are stressed: and the same ways as in the 1918-1920 influenza pandemic. Logic flies out the window replaced by panic, magical thinking and rumors and people happy to take advantage of others. Selling fake cures, refusing masks, refusing immunizations and denying that it is happening at all.

For the Ragtag Daily Prompt: measly.

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Small miracle

Notice the coat. What is missing? Here is a cropped earlier photograph:

We go for a lovely walk in Rockcreek Park in Maryland. It is very cold and the creek is half frozen. My son goes down to the creek and throws rocks on the ice.

The ice makes wonderful sounds and the rocks mostly do not go through the ice. It is in beautiful patterns.

We get cold and are ready to head back. My son realizes that he has lost the button. We spend some time looking for a brown button in brown leaves. No button. We are colder.

When I look at the photographs later, they confirm that the button was lost on that walk!

The next day my ex-husband’s father’s second spouse comes to brunch. She is the last of the six grandparents. We have a lovely brunch. She is a potter and a landscape architect and is helping my son and daughter in law with their garden and yard. After brunch we walk back to the creek, keeping our eyes peeled for the button. She has a button collection but not that button. He might find one on the internet. Or he could contact Pendleton, since it is a Pendleton coat. Very handsome.

At the creek we search in the leaves and along the water, all of us. No button. I cross the little bridge, seeing a lump on the ice the right size and color. I clamber down the bank. “No,” I say, “Oh! Yes! Found it!” The brown button is sitting on the ice. It must have shot across the ice when he bent down to pick up a rock! “Hooray!” we all say. A small miracle for the season. Happy winter holidays and prayers for those lost.