My end of life plan

My End of Life Plan and Wishes are as follows:

1. My plan is that my life should end after a half day of skiing for free at age 125 or older.
2. My wish is to ski quite brilliantly, smoothly and gracefully, though not as aggressively as at age 110 and below.
3. My plan is that other skiers will ask who that brilliant skier is and that all the lift operators will know.
4. My plan is that I will have a delicious lunch, with a glass of champagne, in a condo overlooking the slopes.
5. I plan to have a hot tub and then a massage from one of the many handsome men who flirt with me.
6. My plan is that I will sit in a comfortable leather armchair with my feet on a foot stool, while three of my male friends vie to be the one to bring me the second glass of champagne.
7. My wish is that I will not need any cosmetic surgery or false eyes or ears or teeth or joints or heart valves and will retain my spleen, teeth, gall bladder, appendix and brain in full operating order.
8. My plan is that I will not be on prescriptions, medicines, vitamins, supplements, medical foods, or nutraceuticals nor under the care of any quacks of any sort.
9. My wish is that my male flirts will all think that I am not a day over 75.
10. My wish is that I will be listening to live music, a woodwind quartet or string quartet, just dropped in to say hello, along with three of my great grandchildren, showing off their olympic ski medals, summa cum laude graduation documents, or Nobel prizes.
11. My plan is that after the quartet leaves, I will fall asleep….
12. ….and not wake up, and that though my attendants are sad, none of them throws themselves off the balcony over the cliff and are all surprised at my true age and at the bountiful gifts I have left to each of them with proof that a long life and compounded interest have excellent results. My children, grandchildren and great grandchildren will live long and prosper as well.

http://www.nutraceutical.com/
http://www.fda.gov/Food/GuidanceRegulation/GuidanceDocumentsRegulatoryInformation/MedicalFoods/ucm054048.htm

The photograph is from 2014.

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.

mask up

Care for your family and friends and community. Mask up and do the best you can not to get nor give Covid-19 this season. The winter is dark but the sun will start returning to us soon. Like the seeds in the ground and the trees with no leaves, we can get through this dark season caring for each other.

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 β€œimmune 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 β€œbad” 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

What I learned from my first doctor job

When I started my first job, I had a nurse and a receptionist within a bigger clinic, all primary care. Fresh out of residency. One month in I asked to meet with my nurse and the receptionist.

The receptionist brought the office manager. I was surprised, but ok.

I started the meeting. “I am having trouble keeping up with 18-20 patients with fat charts that I have never seen before, but I think I am getting a little better at it. What sort of complaints are you hearing and how can we make it smoother?”

The office manager and the receptionist exchanged a look. Then the office manager excused herself.

Weird, I thought.

The three of us talked about the patients and the flow and me trying to keep up. About one third were Spanish speaking only and I needed my nurse to translate. That tended to gum things up a bit, because she could not be rooming another patient or giving a child vaccinations.

I thanked them both and the meeting broke up.

Later I found that the office manager had been brought in because another doctor tended to manage by yelling and throwing things. And another doctor had tantrums. So the receptionist was afraid of me and had asked the office manager to stay. The moment they realized that it was collaborative and I was asking for feedback and help, the receptionist was fine without the office manager.

That was an interesting lesson on working with people. I had been very collaborative with the nurses and unit secretaries in residency. As a chief resident, I told my Family Practice residents to treat the nurses and unit secretaries and in fact everyone, like gold. “They know more than you do and if you take care of them, they will save your ass!” The unit secretaries would go out of their way to call me in residency. “Mr. Smith is not getting that ultrasound today.”

“Shit. Why not? What the hell?” I would go roaring off to radiology to see what the hold up was.

The unit secretaries did not help the arrogant residents who treated them like dirt.

I thought it takes a team. I can’t do my work without the nurse, the pharmacist, the unit secretary, the laundry, the cafeteria workers, the administration. It takes the whole team. I value all of them.

Falling II

poem: Falling II

I can’t fall
until I let go

my cousin says that people learn
to stay away from angry people

I am hurt and then let that go
and think, yes, she is right
my cousins say over and over
that I am too angry when I’m not angry
until it makes me angry

my cousin gives good advice
I let go and stay away
it’s not my anger

I thought allopathic medicine
was where we listened to the patient
I let go of that too, disillusioned

a family member wants to be free
I let go

I let go of you slowly
I let go of coffee
I let go of sitting next to you
I let go of seeing you daily
I let go of asking
I let go of driving by

I let go of hope

I have not let go of longing

I think that I can fall
without letting go of longing

it is only a thread
like a spider’s web
thrown into the universe

I don’t think it will stop me
from falling

Admitting diagnosis: old guy, don’t know

I wrote this in 2010, after I worked for three months at Madigan Army Hospital. I really enjoyed working there. It was the first time since residency that I had worked in a big hospital — 450 beds — and in a not rural setting. I kept asking to work with residents and eventually the Captain and I worked it out to both our satisfactions.

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During my three months temp job at a nearby Army Hospital, I am asked to help the Family Medicine Inpatient Team (FMIT) whenever a faculty member is sick or out or deployed, which turns out to be fairly often. I enjoy this because I want to work with residents, Family Practice doctors in training. It is very interesting to be at a training program, watch the other faculty and work at a 400 bed hospital instead of my usual 25 bed one.

Two patients need to be admitted at the same time on our call day, so the second year resident takes one and I take the other. The report on mine is an 82 year old male veteran, coughing for three weeks, emergency room diagnosis is pneumonia.

The resident soon catches up with me because her person is too sick and gets diverted to the ICU. Mr. T, our gentleman, is a vague historian. He says that he has always coughed since he quit smoking 15 years ago and he can’t really describe his problem. He’d gotten up at 4:30 to walk around the assisted living; that is normal for him because he still does some o the maintenance. He had either felt bad then or after going back to sleep in a chair and waking at 10. “I didn’t feel good. I knew I shouldn’t drive.”

He’s had a heart attack in the past and heart bypass surgery. Records are vague. The radiologist reads the chest xrays essentially as, “Looks just like the one 3 months ago but we can’t guarantee that there isn’t a pneumonia or something in there.” He has a slightly elevated white blood cell count, no fever, and by then I do a Mini-mental status exam. He scores 22 out of 30. That could mean right on the edge of moderate dementia, or it could be delirium. I get his permission to call his wife.

“Oh, his memory has been bad since he spent a year in a chair telling them not to amputate his toes. And he was on antibiotics the whole time. He wasn’t the same after that. This morning he just said he didn’t feel right and that he shouldn’t drive.” So his wife called an ambulance.

The third year chief resident comes by and wants to know the admitting diagnosis. “Old guy, don’t know.” is my reply. “Either pneumonia or a urinary tract infection or a heart attack maybe with delirium or dementia or both.

The second year is helping me put in the computer orders, because I am terrible at it still. She could put them in upside down and asleep. “Why are we admitting him, anyhow? We can’t really find anything wrong, why not just send him home?”

“We can’t send him home because he can’t tell us what’s wrong. He might have an infection but he might not, and he has a really bad heart. If we send him home and he has a heart attack tonight, we would feel really bad. And he might die.”

I was getting a cold. I had planned to ask to work a half day but half the team was out sick so I just worked. But by morning I had no voice and felt awful. I call in sick.

At noon the phone rings. It is the second year. “You know Mr. T, who we admitted last night?”

“Yes,” I say.

“He had that heart attack during the night. Got taken to the cath lab. You made me look really good.” We had worked on the assumption that it could be early in a heart attack though the first labs and the ECG were negative. I had insisted on cardiac monitoring and repeating the enzymes. The resident had finished the note after I left and the night team had gotten the second and abnormal set of enzymes.

82 year olds are tricky. With some memory loss he couldn’t tell us much except that “I don’t feel right.” He was right not to drive and we were right to keep him in the hospital. And if it had all been normal in the morning, I still would not have felt bad about it. The residents are looking for a definitive diagnosis, but sometimes it’s “Old guy, don’t know,” until you do know.

No pandas

Today is PANS/PANDAS awareness day. I wrote this a couple weeks ago.

PANDAS PHYSICIANS NETWORK: PANS/PANDAS AWARENESS DAY

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No pandas

I don’t have PANDAS because in the United States we barely believe in it in children and we don’t at all in adults.

I don’t have PANDAS because even though one psychiatrist said I did, he retired, and the next one says I don’t. Then not sure then no. They don’t agree.

I don’t have PANDAS because my primary care doctor won’t read the guidelines even after I have been her patient for seven years.

I don’t have PANDAS because my pulmonologist has never heard of it.

I don’t have PANDAS because it would be a lot easier to put me on a mood stabilizer to shut me up than listen to me.

I don’t have PANDAS because I am labelled difficult because I am afraid to take a mood stabilizer because I do not get a fever or a white count so my main symptom of infection is that other doctors think that I am manic though I am hypoxic and short of breath. They want to fix my mood while I want to not die of pneumonia, so our goals are at odds.

I don’t have PANDAS because I am a doctor and if I had PANDAS my fellow local doctors would feel guilty that they have told each other that I am bipolar and manic for the last 18 years and have shunned me at the county medical meetings and won’t even send me the invitations, except for the one that forwards them. He says he has given them my email and he doesn’t understand why they don’t send me the invitations.

I don’t have PANDAS because Seattle Children’s doesn’t allow the Cunningham Panel to be drawn and they say there is not enough evidence yet.

I don’t have PANDAS because I can’t afford to pay $925 on my own for the Cunningham Panel and anyhow my antibody level is back to whatever is my new baseline, higher than before no doubt.

I don’t have PANDAS because the other doctors are frightened: if I have PANDAS then who else does and if I have chronic fatigue caused by hypoxia and fibromyalgia and it’s related to PANDAS then who else would they have to test and neuropsychiatric is a whole different thing from psychiatric and we swear that we don’t know what causes chronic fatigue and fibromyalgia.

I don’t have PANDAS because I am an adult who lives in the US though if I was in Canada or Europe I could in fact have PANDAS.

I don’t have PANDAS because in the United States we barely believe in it in children and we don’t at all in adults.

Covid-19: Emotional weather

I do not think of emotions as bad or good. None of them are bad or good. They are information, controlled by electrical impulses and hormones, evolved over millions of years (or endowed by our creator, for those who swing that way).

I don’t dismiss emotions. I listen to them.

I think of myself as an ocean. There is all sorts of stuff happening in the depths that I don’t understand. Probiotics, for example. I don’t take them. If not for penicillin, I’d be dead many times over, from strep A pneumonia twice and other infections. I don’t think we understand probiotics yet. We don’t understand the brain, either.

The emotions are the weather in my life. I don’t really control them but they don’t control my ocean, either. Some days are sunny and gorgeous and then a storm may blow up. I am afraid of hurricanes, one destroyed my grandparents’ house in North Carolina, on the outer banks. I think all the cousins still mourn that house. And I miss my grandparents too, all of them. And my parents and my one sister.

See? The weather got “bad” there for a moment, but it isn’t bad. Storms have their own beauty though we hope to batten the hatches and that not too much damage is done. Maybe there is rain, scattered showers, sun breaks, a lenticular cloud. In the Pacific Northwest on the coast, the weather can change very quickly and we have microclimates. My father lived 17 miles away, but inland from me and in a valley. It was warmer in the summer and colder in the winter.

My goal with my weather emotions is to pay attention to them, let the storms blow in and out, and try not to harm anyone else because of my weather. When my sister was in hospice, we had a sign up in my small clinic. It said that my sister was in hospice with cancer and that clinic would be cancelled at some point with little warning. Patients were kind and gentle with me. And then it was cancelled, when she died. I got cards from people. They were so kind, thank you, thank you, and I could barely take it in. My maternal family then dealt with grief by having lawsuits. I don’t think that is a good way to deal with grief, but we just see things differently. Maybe it’s the right way for them. I don’t know.

Whenever I was having internal emotional weather that stirred me up, I would tell my nurse or office manager. Because they will sense my weather and need to know what is up. I had enormous support from them during a divorce, while my partners treated me horribly. My nurses and office manager knew me and my partners didn’t. My partners distanced me as if a divorce were catching. Whatever. Their loss.

Sometimes patients sensed that I was upset. I could tell by their faces. If they didn’t ask, I would. Bring the emotions out. Reassure them that I AM grumpy but not at them. Stuff in my own life. No worries.

Sometimes clinic is about a patient’s weather. They ask if they can tell me something. Often it is prefaced by “Maybe I need an antidepressant.” or “I feel really bad.” When they tell the story, usually I would say, “I think it is perfectly reasonable and normal that you feel angry/hurt/shocked/horrified/grieved/upset.” And then I would ask about an antidepressant or a counselor and most of the time, the person would say, “Well, I don’t think I need it right now.” What they needed was to know that their weather was NORMAL and REASONABLE.

I am seeing things on Facebutt and on media saying that mental health problems and behavioral health problems are on the rise. Maybe we should reframe that. Maybe we could say, “The weather is really bad right now for everyone and it’s very frightening and it is NORMAL and REASONABLE to feel frightened/appalled/angry/in denial/horrified/confused/agitated/anxious or WHATEVER you feel.” This weather is unprecedented in my lifetime, but as a physician who had very bad influenza pneumonia in 2003 and then read about the 1918-19 influenza, I have been expecting this. Expecting a pandemic. Expecting bad weather. This will pass eventually, we will learn to cope, be gentle with yourself and be gentle with others. Everyone is frightened, grieving, angry, in denial or in acceptance. The stages of grief are normal.

Hugs and prayers for all of us to endure this rough weather and help each other and ourselves..

I took the photograph in color. My program made a black and white version. It looks like the back of a stegosaurus to me, a dinosaur now living as a mountain.

For the Ragtag Daily Prompt: rainbow. Because sometimes the rain and sun combine to make a rainbow.

Fuzzy Poet Doctor and the small child

I think I finally understand what I have been doing in clinic all these years. And not just in clinic. As a theory it explains both why patients, nurses, hospital staff and specialists really really like me and my fellow Family Practice doctors, particularly the males, and the administrators, really really do NOT like me.

I am on a plane flying to Michigan a few weeks ago. Double masked. N95 with another mask over it. Sigh.

A friend keeps saying that he can see into me. He can, but he can see thoughts. Not feelings. I am wondering if I see feelings. But I see the stuffed feelings particularly, the ones that people keep hidden. They are like clouds.

And then I think, oh.

I automatically scan any new person for their small child. The inner small child, who is often damaged and hidden. The small child is hidden under those stuffed feelings, which I think of as monsters. In Ride Forth, I am writing about pulling every monster feeling that I can find stuffed out and letting myself feel them. And that people do not like seeing me like that. Their monsters attack me!

Except that the monsters don’t attack. The monsters come to me and say, “Please, please, help me. I want out. The small child needs to heal.” The monsters lie their monstrous heads in my lap and weep.

Now WHY would I develop this skill? That is weird.

I develop it because my parents both drink. The myth in the family is that it was my father. But my mother’s diaries and also her stories make it clear that she drank heavily too. I think they were both alcoholics. And she told two stories about me trying to get someone to get out of bed to give me food as a toddler. As jokes. But it is not a joke. I have food insecurity. At every meal, I think of the next one and whether there is food available. My daughter has it too….. epigenetics.

I think that the only way I could love my parents was to have compassion for them. Once you see another person’s damaged small child, then how can you not feel compassion for them?

With patients I learned to be very very delicate and gentle about asking about the cloud. Just gently. Sometimes people open up on the first visit. Sometimes they shut tight like a clam and I back off. Sometimes they return the next visit or the 3rd or the 8th or after a couple years… and say, “You asked me about this.”

It’s nonverbal communication. The reason why I take the WHOLE history MYSELF at the first visit is for the nonverbal communication. When the person doesn’t want to answer a question, veers away from a topic, switches subjects: there is my cloud. That is where the hurt is. That is where the pain is.

The first cracks in the United States medical system collapse are appearing. Not doctors quitting, not nurses, but medical assistants. Here is an article about how clinics all over can’t hire medical assistants. Because there are tons of jobs, employers are offering more money, why would you do a job where you may well be exposed to covid-19 if you can do something else? And make as much money or more….

The cracks will widen. Ironically doctors are doing what I have done for the last ten years: “rooming” the patients themselves. Ha, ha, good may come out of it, after the disaster. Which is getting worse fast. If people don’t put their masks on and don’t social distance and don’t get vaccinated, I predict more deaths in the US this winter then last winter. Sigh. And in the US we will run out of medical assistants, doctors and nurses.

It is ok to gently ask a patient about that cloud. It is not polite to “see” it in a Family Medicine colleague or and administrator. I can’t “not see” it. I can’t turn it off. However, on the plane my behavior changed even before I could put all of this into words. The words are that I have to be as gentle with everyone as I am with patients.

And the trip felt so odd. I was putting this into effect before I had words. That is how my intuition works. But everyone, absolutely everyone, was kind to me on the trip. A Chicago policeman helped me in the train station and was super kind. It was weird, weird, weird, with bells on. It took me a few more days to be able to put it into words.

Problem intuited, after 60 years of study. Implementation of solution proceeds immediately. Logical brain struggling to catch up, but results satisfactory long before logical brain gets a handle on it.

Pretty weird, eh? I think so. My doctor said that an episode of Big Bang Theory could be written just by following me around for a day. I think it was both saying that I am smart AND that I have no social skills. But I have implemented the social skills program already. She’s just upset that I gave her justifiable hell two visits ago and also…. I do hide my brain. Because sometimes colleagues are jealous.

But maybe they should not be jealous. Maybe they can learn it too. Maybe I can teach. Maybe….