Monthly Archives: January 2023

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Winter travel

My daughter and I travel again this winter. We know it’s a crapshoot with the combination of Covid-19, influenza, RSV and weather. She flew from Denver to Seattle. I tested positive for Covid-19 two days before she arrived. Change of plans! A friend of hers picked her up and she stayed with them until I had finished the first five days of isolation. Then she came to my house and we both masked. I ate upstairs and she ate in the daylight basement.

We flew from Seattle a few days before Christmas. We were lucky enough to fly, since the plane the day before was cancelled and on the day after. We had a direct flight Seattle to Dulles. We had a lovely Christmas with my son and daughter-in-law.

We also got to visit with 4 over 80 year old family members once I tested negative for 48 hours. My two aunts and an uncle on my father’s side and a grandmother on their father’s side. I am so happy to have seen all of these elders! Not olders, they are not old until at least 90 and that may move back too!

For the Ragtag Daily Prompt: travel.

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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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Keyboard supervisor

Elwha supervising me at the keyboard.

In high school I took typing for dummies. I was terrible at it and slow. Many women were avoiding typing classes in the late 1970s because they did not want to be secretaries. I wanted to be a writer and knew that I was a terrible typist. I also could not spell my way out of a paper bag. My mother was quite dyslexic and did not care. Once I had to sound out a word at the store from her grocery list: “LETIS”. Oh. Got it. Her letters are wonderful, not only interesting and creative spelling, but also wandering tenses and subjects.

We got our first electronic medical record in the early 2000s. We went from looking up labs on a computer and using a computer for maybe an hour total per day to full on eight hours a day. My shoulders and the nurses’ shoulders all locked up and we all filed for Workman’s Comp. I had to work with physical therapy to get my shoulders to unlock. My nurse pointed out that all problems were treated as “User Problems”. That is, WE were the problem, not the program. I realized that having the doctors who love computers pick out the program, learn about it for a year, and then teach us in two days and go live was a massive mistake. None of us understood it nor did we understand any of the computer lovers’ terminology. We rapidly quit asking questions because we didn’t like being treated as morons. Every person who was not a computer lover figured out their own work arounds. Two years later, the computer lovers tried to get us to standardize what we were doing. It’s not very surprising that we resisted and hated them. We had had to figure it out on our own with no help and we were very cynical and disbelieving that they would now “Make it easier.” Nope, they didn’t.

If I were to do it over again, the team picking the electronic medical records would include a couple of older doctors who hate computers. One of the selling points to the computer lovers was “you can write your own templates”. Our response was “We would rather be boiled in oil.” Three years after we got the system I asked the head computer lover doctor to write me a template. It was generic. Patient is complaining of (a problem) (more than one problem). The (problem) has been present for (a day, two days, a week, a month, a year, too long). The problem is (getting worse, the same, getting better). And so forth. Because we had all sorts of problems that did not have a template. My computer lover doc rolled his eyes, but set it up for me.

I also asked the clinic CFO WHY they didn’t set up typing lessons for the doctors who couldn’t type. I watched one of our group hunt and peck with two fingers. “You want them faster, right? You’ve said we could do the whole note in the room. How can they if they can’t type?”

“We are not giving them typing lessons.”

“Well, I think that’s misguided.” Ok, what I meant was that I thought it was STUPID.

Another selling point was that we could finish the note in the room. It turned out that I could do the note in the room after I had fought with the program for two years. It consistently took me 25 minutes. Then they ramped up the schedule and set us all at 20 minute visits. I started running late all the time. I told the front desk, “I’ve been told I should get the note done so I am. And if it takes me 25 minutes, that is what it takes.” Once the hospital kicked me out, I started my own clinic and did 30 minute visits. This did not make me rich but it made me a heck of a lot happier.

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For the Ragtag Daily Prompt: keyboard.

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Rethinking lawns

Lawns are being rethought. People are planting meadows or strips of meadow, for bees and insects. They need corridors and it helps with plant diversity and the health of the earth. A lawn with pesticides has a huge issue of a depauperate fauna, that it is just one sort of grass. The pesticides will kill insects as well as “weeds”. We have to redefine “weeds” and value the diversity of meadows and wild places and insects. I am hoping that my lawn will be taken over by thyme and oregano and parsley, all of which are spreading in my yard. Half of my yard has been wild and unmown since 2007 and the local deer and birds love it. Plant a meadow or let part of your yard go wild! We need the diversity.

The photograph is from the wild part of my yard in August 2022.

For the Ragtag Daily Prompt depauperate.

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In praise of stuff

A month ago my neighbor called. “Do you have a big canning pot?”

“Of course,” I say.

“Can we borrow it?”

“Of course.”

He came right over to get it. “The electricity was off for days at my cousin’s and all the berries thawed out in the freezer. Mom is going to make jam. Do you like jam?”

“Heck yeah!” I say.

The canner is way up on a high shelf. It has a tool to pick up jars too. “Do you need the lids?” I ask.

“No, we are good.”

I got the canner back a few days later with a beautiful jar of jam. Yum.

I am going against the fashion tide. My house is not spare and elegantly decorated. I joke that it is decorated in “Pack rat Cat lady”. I have two cats. My daughter wants me to not get ten or twelve. I don’t want ten or twelve either. Two is fine.

I have stuff. I have a house like my grandparents. Though really, I have less stuff than they did or than my parents did.

I loved my maternal grandparents house. It was an old farmhouse near Trumansburg, New York. My grandfather was a psychiatrist and professor at Cornell. The old farmhouse had a “newer” house built on, colonial style, in the 1860s. Fourteen foot ceilings and a fireplace in every room. There was a grand entrance with Corinthian columns that was almost never used. The hallway had a grand staircase and a spectacularly uncomfortable horsehair couch. My cousin always said she wanted it: I hope she got it. There was a back stairway as well, in the old house. The door from the newer house to the older one upstairs went into the attic, which was full of all sorts of mysterious old things. My sister and I were three years apart and had three other cousins between us and we all played for hours. We dressed up in my mother’s 1950s prom dresses and made fun of all of it. There was another attic, with a pull down ladder. I only got to go there a few times. I loved it. The back stairs were very narrow and twisty. The kitchen had huge cupboards made from old barn boards and with hand forged hardware. All the cupboards along one wall had doors in the kitchen and on the other side, in the dining room. That fascinated me too. There were two cellars as well. One larger one which once had a copperhead snake

 that my grandfather killed with a hoe, and a smaller one with a door flush in the floor. My grandparents had a wine cellar there and we were strictly not to go in there without an adult. There was a huge flagstone screen porch off the kitchen and dining room, with a table and chairs and a daybed. We practically lived there in the summers.

That house would be a nightmare to heat now. I love old houses, though. My house is from 1930 and really quite big. It is full of books and stuff, but my parents had a smaller house, a full two car garage with no cars, and two barns. I cleared that after my father died in 2013. Every time my daughter says I have too much stuff, I point out that I have gotten rid of a house full and two barns full. I am resting on my laurels for now.

My daughter gives me grief about the stuff, but she borrows too. She borrowed two sleeping bags for a trip when her brother helped drive her car because she had an injury. She borrowed “ugly mom shorts” for a summer job where the shorts had to be long. She tells me that she will get rid of it all when I die, but she has her eye on some things.

I am going against the tide. What is the idea behind having an empty looking house, a living room with a couch, two chairs, a rug and side table with a vase and possibly one book? Ugh. Not me. My living room must have at least 100 books on shelves along one wall. My mother was an artist and I am still trying to get her art out into the world. She was prolific. Watercolors, etchings, drawings, oil paintings and pottery too. My word.

I have a grandparent house. I have stuff and I know how to use it. I have books. I do look things up on the computer, but old books are amazing for understanding what people were thinking, what was acceptable, what discrimination would horrify us now, old recipes and photographs and children’s books. I am not an expert canner but I can make jam. I am a great knitter. I play guitar and flute.

I took care of a two year old neighbor about ten years ago, on and off. The first time he came to my house, I showed him the stick dragon, that would roar with flashing eyes, in one closet. He wanted the  door closed right away. But the next time he came, he went straight to that closet and pointed. “Do you want to see the stick dragon?” I asked. He nodded, very serious. I opened the door and we got the dragon to roar again. The grandparent house if full of mysterious things and old games and toys and grandparents who could possibly be witches or magical or grumpy some times.

My sister would get mad at my mother and say, “I’m going to run away and live with grandmother!” We stayed with my grandparents for a week while my parents were gone. By the end of the week, my sister threatened my grandmother, “I am going to run away to mom!”

My house is ready. Now I need a grandchild. For now, I borrow them, while I loan out the odd things that people no longer have in their spare and elegant houses.

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I don’t have a picture of my grandparent’s house with me today. However, this is a picture with me on the left and my sister and the maternal cousins. I do not know who took it. This was in the late 1960s.