Category Archives: hope

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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 “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.

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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, “Release 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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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.

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Heart meditation for the Solstice

It snowed last night. Covid is making me fall asleep at 4 or 5 pm which means I am very awake at midnight. The cats and I checked out the snow at 1 am.

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Avalokitesvara Bodhisattva is the Bodhisattva of Compassion. He is enlightened, yet chooses to return to earth over and over, until everyone is enlightened.

In China, he changes gender and names into Kwan Yin, the Bodhisattva of Compassion.

In college I date a lapsed Jewish Zen Buddhist and I learn to meditate. At the group meetings there are 6 or 7 of us. The Heart Sutra is recited and we meditate facing the wall, sitting on our zafus, for 40 minutes. It is easier to meditate in a group, though I have no idea why. Pride? Some connection to other’s breathing? The breathing will serve me very very well later, when I keep getting pneumonia. The ability to slow my breathing will help me survive.

When we had a group meditation, the Heart Sutra was read slowly and clearly. It has it’s own rhythm. I had lost it and finally found the translation we used. Here it is:

There is more than one translation, here: https://dharmanet.org/HeartSutra.html. I have tapes and books by Jon Kabat Zinn, who has studied mindful meditation for 30 years. He gets better results in his mindful meditation pain classes than opioids, with an average decrease in pain of 50%. His tapes have the same slow gentle speech as our Heart Sutra readers. It is hypnotic and I can relax. Though my oppositional defiance kicks in when he says firmly that I am to fall more awake, not asleep. I listened to that CD every night for a year after my father died. When he would tell me to fall awake, I would smile and slide into sleep, a happy rebel. I was comforted that I did not have to do what he said.

Where is the Avalokitesvara, the Kwan Yin of the West? What examples in the largest religions are there? Someone who stays even after they have achieved enlightenment/heaven because they want everyone there. Not only that, but they believe everyone can be there. And they will not give up until everyone is there.

I was surprised when a Unitarian Minister stated that Unitarians do not believe in Hell, because a loving creator would not consign anyone to Hell. I didn’t really want to give Hell up, but I also agree that a loving creator would not consign anyone to hell. It’s a bit easier for me to think of people as continuing on a wheel of life until they achieve enlightenment than to think of some people going to Heaven, but after all, I don’t know the whole story. No one knows another person’s whole story. I wrote DMV to figure out the Hell/Heaven thing. And the lead character wants to go back, because her work is not done yet.

I am thankful for paxlovid at the moment. I am thankful that I found this translation of the Heart Sutra.

Happy Solstice.

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The first photograph is Elwha looking very meditative after going out in the snow. Here they both are in the snow:

For the Ragtag Daily Prompt: solstice.

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Feed the birds

I fill the bird feeder, a day late, because I had to go buy more birdseed. I also buy suet and fill that feeder. I walk both cats, harness and leash, one at a time. I put both of them in the outdoor screened animal container and they crouch, riveted watching the birdfeeder. I put four peanuts along the top of the fence.

I hold a fifth peanut in my hand over my head and wait. It starts snowing, just a little.

The flock of goldfinches, in their winter more subtle coloring, shows up. I count nine. The feeder can hold 6 at a time. They ignore my hand. A stellar jay comes by, but stays high in the tree. Chickadees pop in between the goldfinches. They are rounder and a little bigger and talk to me. No one comes to my hand. Juncos come to the ground beneath the feeder. The cats would REALLY like to catch them.

And then a bird does come. A hummingbird comes to my hand and hovers right by it! It does not land. It doesn’t like the peanut. It then goes and buzzes the glass, where I used to have a hummingbird feeder up, until the ants find it.

I laugh and get the other hummingbird feeder. I make food and wait for it to cool. I fill both feeders. The Anna’s hummingbird finds it within 15 minutes and eats a lot. The other feeder is on a different window, right outside my desk window. It is soon occupied by a second hummingbird.

I hope to have more photographs soon.

I took this out my desk window yesterday.

There is avian influenza around. I have two feeders and wash one very thoroughly in hot water and soap each time. I change the feeder out every time, to try to reduce the chance of the feeder passing on infection. And wash my hands very well too.

Though it’s rather more than tuppence a bag!

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In the dark

I choose to dwell in the dark with the monsters.

I came here because I wanted to understand how people could be monsters. People turn in to monsters sometimes. Not the crazy people or the serial killers: just normal people. They have enormous fights in their families. They get drunk or use drugs. They kill themselves with cigarettes. They sit unmoving in front of the television. They fight family or close friends. Families sue each other over the parent’s will. They fight over the stuff or over mother or over who will take care of father. They disown each other. They say “I only let nice people in my life.” That leaves me out. And I don’t want anything to do with anyone who says that. That is monstrous. Do they turn the other cheek? Do they love their neighbor as themselves? No. They are monsters.

I kept studying the monsters and studying them, until I found my own. I rescued mine from a deep hole. The monsters were babies. They were filthy and frightened and crying and abandoned. I washed them and diapered them and fed them and wrapped them in blankets. They stared at me, sullen. They had no idea how to respond to being cared for. I had to learn to love them. I loved them right away, even though they were monsters. I cared for them and they grew up, loved, happy, adults.

And then I see the monsters in other people. People hide their monsters, stuff them in dungeons, neglect them, deny them, scream at them. The monsters realize that I can see them and they start crying. “Help us! Please! Let us out! We are cold! We are hungry! We are neglected!” I learn not to talk to the monsters until the person is gone. The person may never talk to me again if I acknowledge the monster. They think I am the monster. I’ve reminded them of theirs or named them! Most people hate it. I learn, slowly and painfully, that I can only talk to the monsters after their people leave. The monsters hang around. They tell me their stories. They tell me their misery. I hold them while they cry, heads in my lap, howling and breaking things. But eventually they have to return to their person, to their jail, to their suffering.

I like the monsters better than the people. Some people wear the monsters on the outside. Veterans, almost always. To keep people away. They come to clinic and try to scare me. This is very very difficult because I like the monsters. I am delighted to meet the monsters. This is startling and the veteran promptly calms down. I am not afraid. I like the people who wear their monsters on the outside: they are not hiding them. It’s the ones who hide and abuse and torture their monsters: I do not trust those people. And I feel huge grief and sorrow, pity for their monsters. I can’t fix them. The people must each turn to their own monsters. Let them come to consciousness. Face them, comfort them and at last, love them. And this is hard. It is very hard. It is a life time of work. It is emotional maturity. It has nothing to do with educational level. It is hard work worth doing.

I choose to dwell in the dark with the monsters. Because they need me most of all.

Blessings.

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Vaccination talk

My cousin asks me once, why do doctors say, “This will only hurt a little?’ when they give a shot.

I thought about it. “It’s a matter of scale. Picture this: in room one, I have a woman who thinks her lung cancer is back and it is. In room two I have a mother and daughter crying because the daughter is pregnant and frightened. In room three, I have a well adult who needs a vaccination. Scale their levels of pain.”

Room one is very high, room two is very high, room three barely registers on my pain scale.

Poll: 1 in 7 parents have not talked about vaccines with their child’s doctor

I would give out a health department vaccination information booklet by 24 weeks to my pregnant patients, especially the first pregnancy. I previously had given it later, but then I had a woman who refused the child’s vaccines at visit after visit after visit, saying that they were still doing research. The child still had no vaccinations at 9 months.

Remember the woman who refused vaccinations for her children? She had more than four children. They all got whooping cough, pertussis. They whooped for months and were on quarantine. They were not allowed out of the household, any of them, until they were no longer infectious. The mother said she now was for vaccines and got them vaccinated.

I have seen adults with pertussis. Adults do not whoop but they cough. They can cough until they throw up or until they break a rib. For months. It is not fun at all. The adult Tdap stands for tetnus, diptheria, and acellular pertussis. I have never seen a case of diptheria and I don’t want to. It sounds horrible and can kill.

Have I seen a complication of a vaccination? One in 30 years of practice. And I know a person who had a complication, but they were not my patient.

The illnesses cause way more damage and disability than the vaccine. In residency I care for a young man in a group home. He can’t talk and has an odd skull shape. His mother got measles during the pregnancy. Measles is one of the infections that can cause severe birth defects. Get vaccinated before getting pregnant, though half the pregnancies in the US are “unintended”. That usually means “unbirthcontrolled”. I do not really understand that, since the risk of pregnancy in a fertile woman is one in four every time. Twenty five percent seems a pretty high risk to me.

I’ve written about my response to my last Covid-19 vaccination. It’s not a complication. It is an antibody response and it means that my immune system is WORKING, though admittedly it is weird and annoying. I don’t like the muscle dysfunction, but I will get the vaccinations anyhow.

I have a very alternative young woman in for prenatal care once. I give her the vaccination booklet. “Oh, my child is getting every vaccine there is,” she says.

“May I ask why? I was not expecting you to say that.”

“I was in the Peace Corps in Africa. I have seen kids die from every single one of the diseases we vaccinate for. My kid will get ALL the vaccinations.”

I said, “Please would you talk to my other moms?”

She smiled at that. “Maybe.”

I hope she did and does.

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Galatea

I walked downtown in the sun the last two days. It is gorgeous with the leaves still on the trees and falling. Usually it is raining now, so the beautiful fall weather is a little disconcerting. A bit worrisome, even as we enjoy it.

The statue is Galatea, the Haller Fountain, here: https://porttownsendvirtualartmuseum.org/pages/Galatea.html.

Galatea is one of fifty Nereids, sisters, born to Nerius, the God of the Sea in Greek Mythology. The statue that was granted life in Pygmalion by Aphrodite is also Galatea. Galatea is also the fourth inner closest moon of Neptune.

If she comes to life, what will she do? I keep thinking that the earth is coming awake and shaking us to wake us up. Storms and earthquakes and hurricanes and floods. Wikipedia says “The Nereids symbolized everything that is beautiful and kind about the sea.” That seems ironic too, as the sea starts to rise more and more.

We can’t break the earth’s laws, or she will break us.

For the Ragtag Daily Prompt: law.