Category Archives: meditate

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Ode to defiance

Is oppositional defiance running YOUR life?

I am oppositional defiant. I have been for as long as I can remember. I ALWAYS want to argue when someone tells me to do something or gives me advice. BUT, I have learned to work with it.

I work with it by arguing with myself.

Give me a topic. Or advice. I will promptly argue the opposite, internally or externally. Then I will argue the original side. Then my demon fights my angel until they are both tired and decide to go have a beer. Somewhere along the way I will make a decision and also I will laugh, because it’s funny.

B has figured this out. “You argue with EVERYTHING.” he says.

“Yes, and if there is no one around, I argue with myself. All the time.”

However, he is also oppositional defiant. He is smart too, and doing some self examination.

“I am thinking about my life. I think ALL of my important decisions were oppositional defiant ones.”

“Someone told you you couldn’t do that?

“Yes.”

He’s chewing on that. Heh. He accuses ME of overthinking. I replied that I am making up for his underthinking, heh. He suggests that I STOP overthinking and I say, “You want to DESTROY the SOURCE of my poetry?” Double heh.

The point is, some of us are oppositional defiant, but really, we don’t want that to run our lives EITHER. We don’t want ANYTHING or ANYONE to tell us what to do.

B says, “I think that everyone refusing the vaccine is oppositional defiant.” He has a lot of friends, both liberal and conservative.

“That is interesting.” I say. And I wonder if it is worth dying for, to be oppositional defiant. Not if it’s running your life, right? I don’t want ANYTHING to run my life except ME.

So then I spend a bunch of time arguing with myself about the causes of refusing the vaccine. And I have not reached a conclusion. Yet.

I took the photograph at the Bellevue Mall on Monday. A three story waterfall. Really? Isn’t there enough rain in Seattle? We should have a three story sun instead.

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Pediatric autoimmune neuropsychiatric syndrome

Yes, well, PANS rather than PANDAS. PANDAS is just a cooler acronym. Who wants a syndrome named after a kitchen implement? Not me. And probably tuberculosis (my mom’s) was the initial insult and then I was one of those kids who gets Strep A at least yearly. My daughter too, but my son only had Strep A once.

This is actually Pseudoautoimmune. That is, the antibodies that show up to Strep A attack parts of ourselves. It buggers up the acronym so they are not calling in PPANS. Yet. And eventually they will have to drop the Pediatric, so then it’s back to PANS. Oh, well, I can live with a stupid acronym.

My current theory is that the four antibodies that they’ve found so far are an interesting back up crisis system. Either stress or infection can set them off. Once the antibody levels are high, a person gets

1. Either brain fog or some variation of ADHD/OCD/Manic-depressive/TICS/Oppositional Defiance/etc. The brain fog can be labeled depression or memory loss, partly depending on the age of the person.

2. Muscle weirdness: either super strong/super endurance or slow twitch/fast twitch/both muscle dysfunction. With slow and fast twitch muscle dysfunction, theoretically that would be a source of at least some of the chronic fatigue. Chronic fatigue pretty much happens over night and is triggered by one in ten severe infections and/or stress. Though possibly more with Covid-19. The latest estimates are 30% of everyone infected has some form of Long Covid.

3. Anti lysoganglioside. I am still studying lysogangliosides. They lyse ganglions. In theory if this blocks the lysogangliosides, there could be a higher risk of cancer. If the ganglions are lysed more, well, more brain dysfunction and memory loss. I also noticed that I had tremendous muscle pain if I ate the wrong things. This could then be the mechanism for some of the fibromyalgia people.

How to fight this?

It’s not going to be popular in medicine, particularly allopathic, because the main treatments that I can think of are NOT DRUGS.

1. Look for infection and treat it. Penicillin is cheap. High dose if the person doesn’t respond. I don’t look septic when I am near septic: no elevated white blood cell count and no fever. It’s the urine output multiplied by 5, that is, 10 liters instead of 2 liters in 24 hours, that is the clue. This time I did not get to that point and it was milder. Though I need oxygen.

2. Quiet the immune system. Teach the slow breathing that we are using for chronic pain and our anxious people and PTSD veterans. Going from the ramped up hyper crazy sympathetic nervous system state to the quiet relaxed parasympathetic nervous system is a skill that I think anyone can learn. The immune system calms down in the parasympathetic state and antibody levels will drop. The naturopaths want to give tons of pills (that they sell from their clinic or get a kick back from the on line company) for “immune dysfunction” but most of it is crap. Yes, crap. So the naturopaths won’t like this idea either.

3. For the anti lysoganglioside, I’ve treated this by changing my diet. When my antibodies are high, I have to keep my blood sugar as low as possible which means I go keto. As the antibodies come down, I can add foods back in. I am eating everything now except gluten. The gluten is annoying but Things Could Be Worse. Lots worse. This time I figured out that gluten, fructose and sucrose were culprits but not lactose and as I get better rice, potatoes and corn are fine. I dislike soy and always have, except for soy sauce and tamari. Tofu tastes like squishy cardboard to me, yuk. The gluten thing may get better, but since it appears that the baseline of the antibodies rises with each infection/attack, it might not. I will ask for celiac testing in January if I haven’t improved by now. I am not a “bad” celiac who gets terrible symptoms if there is a whiff of gluten. A little doesn’t bother me. French toast two weeks ago brought back the diverticular symptoms and kept hurting for a week. This did motivate me to hold off on gluten. Especially in the holidays and traveling. Again, everyone makes different antibodies, so the food patterns could be highly variable in different people. How very very interesting.

4. Treat the psychiatric stuff. If antibiotics and slow breathing and other parasympathetic exercises don’t help the person, then add the psychiatric drugs. But I’d try the above three first, unless the person is suicidal or threatening others. I am a drug minimalist. Eat food, exercise, have friends, work some, play lots and avoid pills. Including vitamins and supplements.

And that’s the basic plan for treating PANS. The symptoms of Long Haul Covid-19 bear a strong resemblance to my four pneumonias: brain fog or psychiatric problems, shortness of breath, fatigue, muscle pain. Therefore I would try similar treatments which may help some people with Long Haul Covid-19, chronic fatigue and fibromyalgia.

We will see if I make any headway at all.

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For more about PANS/PANDAS: https://home.liebertpub.com/news/revised-treatment-guidelines-released-for-pediatric-acute-onset-neuropsychiatric-syndrome-pans-pandas/2223

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vast

Sometimes emotions are vast. I do not think our culture deals with grief very easily. Grief then becomes a vast pit, stuffed inside us. I sent the Falling Angels poems to friends and family. One older friend said that the poems were too sad and was I that sad all the time?

I replied, no, I am not sad all the time. The sadness is in the poems because there are very few people that I know that are comfortable with sadness and grief. So I put it in to poetry, because I do not want to stuff it. We need to let grief come out and let the tears flow and let it go.

For the Ragtag Daily Prompt: vast.

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Covid-19: caring for yourself

audio version, covid-19: Caring for yourself

A friend took his father to the ER in the next bigger town, sent there for admission to the hospital from the clinic. His father is in his 90s, has heart failure, and his legs were puffed up like balloons with weeping blisters.

They were in the ER for 13 hours, never given food though it was promised, the staff couldn’t even find time to bring a urinal and his father was not admitted. He was sent home. No beds. On divert.

Ok, so when should you go to the hospital right now? Only if you really really can’t breathe….

First, the emergencies. An ER nurse friend talks about “happy hypoxia” where people do not feel bad but have an oxygen saturation of 50%. I suspect that this is when their lungs really are swelling shut very fast. They will turn blue quickly. Call an ambulance. In the 1918-1919 influenza, soldiers “turned blue and fell over dead”. In Ralph Netter’s book on pulmonary diseases, he has a drawing of the lungs of a person who died from influenza pneumonia. The lungs are basically one big red purple bruise with no air spaces. So if a friend is goofy and their lips are turning blue: AMBULANCE.

The one in five hospitals that are 95% full or more in the US are now cancelling all of the elective surgeries: knee replacements, hip replacements, non emergent heart surgeries, all of it.

If you are not dying, do not go to the emergency room if you are in one of the totally swamped areas.

So how to care for yourself with covid-19? Like influenza, it is pretty clear that it either causes lung swelling or the lungs fill with fluid or both. With lung swelling you may be able to stay home. First take your pulse. If you have a pulse oximeter, great, but no worries if you don’t. .What is your resting heart rate? Count the number of heart beats in 60 seconds

If it’s 60-100, that is good. It’s normal. If it is 120 at rest, that is getting worrisome. If you are short of breath at rest and your pulse is over 100, call your doctor. If they can get you oxygen, you still may be able to stay home. If not, emergency room.

Now get up and walk. Do you get short of breath? Sit back down and again, count the number of heartbeats when you are sitting. If your resting pulse was 90 and you jump to 130 walking, you have lung swelling. Functionally you have half the normal air space and so your heart is making up the difference. How to cope? Well, walk slowly. Walk during the day, do get up because otherwise you may get a leg blood clot, but really minimize your activity. Now is not the time to rearrange the furniture. Also, you may not go to work until your walking or loaded pulse is under 100.

If your pulse does not jump up when you walk, next try walking loaded. That is, carry something. Two bags of groceries, a toddler, a pile of books. Go up the stairs. Sit down and take your pulse when you are short of breath or it feels like your heart has speeded up. I am in this category. My pulse is 70, oxygen at 99 sitting. Walking my pulse jumps to 99. Walking loaded my pulse goes to 125 and my oxygen level starts dropping, need oxygen once it gets to 87. I tried a beach walk without oxygen 3 weeks ago. I photographed the pulse ox when it was at 125 with O2 sat at 87. I still need oxygen.

The treatment for lung swelling is rest. This is my fourth time, so I am used to it. Some people will have so much swelling they will need oxygen at rest. If the lungs swell shut, they need to be intubated or they die. Suffocation is not fun. The other treatment is not to catch another virus or a bacteria on top of the present lung swelling. Wear mask, get vaccinated, put out the cigarrette, no vaping, pot is terrible for the lungs too and increases the risk of a heart attack.

With my four pneumonias, the first two made me tachycardic and it took two months for the lung swelling to subside. It sucked. Inhalers don’t work, because they work by bronchodilating. You can’t bronchodilate swollen lung tissue. The steroid inhalers might help a little but they didn’t help me. The third pneumonia took 6 months to get back to work and then I was half time for 6 months. This time I am five months out today and I still need oxygen. Darn. Don’t know if my lungs will fully recover. They may not.

So: rest. Good food. Avoid substance abuse. Mask all visitors and don’t go to parties/raves/concerts/anything. Oxygen if needed and if you can get it.

Take care.

The photograph is me wired up for a sleep study a week ago. The technician took it at my request. I won’t have results until next week.

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even if

even if

I never see you again
you never speak to me again
you never love your bearish parts
you never let yourself get angry
you never let yourself get sad
you never let yourself feel
you tell yourself you are happy
you tell yourself everything is the way it should be

even if

I never see you again

I still love you
I still forgive you

I still love you

I hope that you truly do

find happiness

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I don’t think I realized what I had gotten myself into, but it seemed like the potential for fun and insanity were there in equal parts

sometimes you know things
without knowing

sometimes you no things
without noing

sometimes you know things
without noing

sometimes you no things
without knowing

sometimes you koanow things
without knowing

sometimes you no things
without koanowing

sometimes you koanow
without koanowing

sometimes you koanow

snow

also published on another site today.