hope molting and growing new feathers

A friend away a friend some day
a friend can’t stay all the day
a friend won’t pray a friend can’t play
not today is what they say
a friend they say a friend always
a friend who may return some day

in a way you might say
hope molts and regrows feathers today

I think my inner four year old wrote today’s poem. I am thinking about the song my mother taught me, very young, for when I was frustrated.

My sister and I loved this song and others, Samuel Hall and “I don’t want to play in your back yard, I don’t like you any more. You’ll be sorry when you see me, sliding down my cellar door.”

I gave a young friend a book of rhymes. He looked at me with some horror. “These are nursery rhymes.” I grin at him. “Look again. It’s a book of insulting playground rhymes, suitable for all occasions.” He looked at the book again and held on to it.

The photograph is from the National Museum of Women in the Arts again. Another fabulous painting that seems to fit my theme.

Exercise mets

Mets could be metastases, a terrible word in cancer. But this is exercise mets. I am half way through my pulmonary rehabilitation for pneumonia and getting stronger. So what is a met? “One MET is approximately 3.5 milliliters of oxygen consumed per kilogram (kg) of body weight per minute.” (from https://www.healthline.com/health/what-are-mets#definition).

Ok, that doesn’t seem very useful. I find this way more useful, a chart of how many mets are used for certain activities:

https://www.healthline.com/health/what-are-mets#examples

The treadmill I am using at pulmonary rehab tells me how many mets I am using. However, last time I turned it on and didn’t enter my weight. It uses 155 pounds, which is more than I weigh. I think that then the mets are wrong. It isn’t exact anyhow. The important thing is that I am improving and off oxygen! I am now up to 5.3 mets, going at 3.3 mph, on a 4% grade, for 40 minutes. Pulmonary rehab is twelve weeks, twice a week, with a respiratory therapist and a physical therapist.

My respiratory therapist asks my goals. To bicycle distance, hike across the Olympics, and to ski again, off oxygen. That means altitude. Once we are above 5500 feet, the body really starts noticing the thinner air. I am not there yet but I am so pleased to be improving.

On the chart, I am in the moderate exercise range. To bicycle, I would have to be able to sustain 8 mets. Not yet, not yet.

Being off oxygen (except night, flute, sustained singing and heavy exercise) is GREAT! The intrinsic problem has not been fixed, thought. Fully twenty specialists since 2012 have not figured out why I get pneumonia easily and how to protect me, other than masking and not working in Family Medicine or anything people intensive. It’s annoying, my career has been blown up. I don’t have much hope of an overarching diagnosis at this point, but I’m willing to keep trying. We don’t know everything in medicine and really, I do not think we ever will. It’s endlessly complex and fascinating.

I think the mets chart should be shared with patients. I had one couple who insisted that the woman had PMS even though she was postmenopausal. I scratch my head and continue to watch her. After months something made me suspicious and I order an echocardiogram. She had congestive heart failure, seriously reduced heart output. I promptly called the cardiologist and said, “This is new, she is on NO MEDICINES.” He saw her within a week. Sometimes things do not present in a straight forward manner. She felt much better once we got her heart functioning better. If a person is losing their ability to perform moderate intensity mets, they should see their doctor. It could be spending too many hours in front of a screen (turn it off, get up, go outside, walk daily!) but it could also be something else. Heart is the number one killer still.

Stay healthy and keep those mets up!

Ha. I did use the word certain, didn’t I? And one of my favorite exercises is dancing. Listening to this right now:

part time

I only dress like this part time.

#outfitsinappropriateforwork

A friend took this with my camera at my request. Thank you, friend!

For the Ragtag Daily Prompt part time.

Adverse Childhood Experiences 14: Hope

I keep reading bits about despair and about how a generation of children is being “ruined” by the pandemic.

Not so, I say. There is hope. We need to support each other to survive and then to thrive.

This generation WILL have a higher than average ACE score. If the Adverse Childhood Experience scale is from zero to eight, children in this time period will have at least one higher point than average and many will have three or four or more. Loss of a parent, a sibling, beloved grandparents during covid. Increases in domestic violence, child abuse and addiction. These are all part of the ACE score.

What does this do to children? They have survival brain wiring. They will do their best to survive what is happening. A friend and I both have high ACE scores, 5 or more, and we are both oppositional defiant. We showed this in different ways. He grew up in the same community. He escaped from home and knew all the neighbors. He walked to the local church and attended at age 3 or 4. He has lived in this community all his life.

His oppositional defiance showed up at home, where he consistently refused to obey. And in school, where he confounded and disobeyed teachers and passed anyhow.

My family moved every 1-5 years. I hated moving. I wouldn’t talk to kids in a new school for a year. It was very difficult. So my oppositional defiance was very very internal. I hid in books and in my head. In 6th grade I got in trouble for hiding novels inside the school book I’d already read. I also would just not listen and my respect for the teacher got even lower when she would be angry that I knew the answer to the question once she’d repeated it. I wasn’t listening because I was bored. She was the first teacher that I thought, well, she is not very bright. The next year they stuck me in the honors class and I stopped being bored, though I still questioned practically every opinion every teacher had. I wanted evidence and I did not believe it just because the teacher said it.

I am not saying that oppositional defiance is in every high ACE score. I don’t know that. Why oppositional defiance? Imagine you are a small child and you are beaten. There isn’t rhyme or reason. You can’t predict when the adult will be out of control. Why would you behave “well” if it makes no difference? You might as well do what you want, because nothing you do will change the adult. Or imagine you are a small child who is with one person, passed to another, then to another. You may not exactly trust adults after two or three repetitions. And you want to survive.

There is an increase in addictions, behavioral health diagnoses, and chronic illness in adults with a high ACE score. A researcher when I first heard a lecture about it said, “We think perhaps that addiction is a form of self medication.” I thought, oh, my gosh, how are we ever going to treat THIS? Well, we have to figure that out now, and we’ve had 30 years to work on it.

I was very comfortable with the oppositional defiant patients in clinic. I got very good at not arguing with them and not taking their behavior personally. They might show up all spiky and hostile and I might be a little spiky and gruff back: sometimes that was enough. I think the high ACE score people often recognize each other at some level, though not always a conscious one. With some people I might bring up ACE scores and ask about their childhood. Sometimes they wanted to discuss it. Sometimes they didn’t. Either was ok.

One thing we should NOT do is insist that everyone be “nice”. We had a temporary doctor who told us her story. Her family escaped Southeast Asia in a boat. They had run out of water and were going to die when they were found by pirates. The pirates gave them water. They made it to land and were in a refugee camp for eight years or so. She eventually made it to the US. She was deemed too “undiplomatic” for our rural hospital. I wondered if people would have said that if they knew her history and what she had been through. It’s not exactly a Leave it to Beaver childhood, is it? When she was telling us about nearly dying of thirst in the boat, my daughter left her chair and climbed on my lap. She was under ten and understood that this was a true and very frightening story.

We can support this generation of children. This has been and is still being Adverse Experiences for adults as well. Family deaths, job loss, failure of jobs to support people, inflation. Remember the 1920s, after World War I and the last pandemic, of influenza. “On October 28, 1919, Congress passed the National Prohibition Act, also known as the Volstead Act, which provided enabling legislation to implement the 18th Amendment.” (wikipedia). There were forces trying to legislate behavior, as there are now. The result in 1920s of making alcohol illegal was speakeasies, illegal alcohol, and violence. Some people acted wild after WWI and the influenza pandemic and some people tried to lock down control, by controlling other peoples’ behavior. It did not work then and it will not work now. The wildness is out of control grief, I think, grief dysfunctional and drinking and shooting and doing anything and everything, legal or not. We remember how the 1920s ended too. Let us not repeat that. Let us mourn and grieve and support each other and support each other’s decisions and autonomy.

Blessings.

Covid-19: Hope for Long Haul

I want to offer hope to the people with Long Covid-19. Having been through four bad pneumonias, with increasingly long recovery times, and now disabled for doing Family Medicine, I have experience to share. First I want to talk about chronic fatigue and fibromyalgia.

I am a piler, not a filer. Including in my brain. I have been adding to the chronic fatigue and fibromyalgia pile since I was in medical school.

In residency a new patient questions me. “Do you believe in chronic fatigue?” he says, nearly hostile.

“Yes,” I reply, “but I don’t know what it is or what causes it or how to fix it.”

For years different causes were suggested. Often infections: EBV, mononucleosis, lyme disease. Some people didn’t have any infection. I did note even in residency that my chronic fatigue patients all had one thing in common: they were exhausting.

Does that sound terrible? They were all type A, high achievers, often super high energy. Often they got sick or crashed when they were working three jobs, or working 20 hours a day on their own business, or doing something that sounded insanely exhausting and unsustainable. And most of them wanted that back. “Ok, wait. You were working 20 hours a day, seven days a week, got sick and THAT is what you want to get back to?”

None of the chronic fatigue people seemed to be type B.

Eventually I read that one in ten people with ANY severe infection can get chronic fatigue.

Then I work with the U of Washington Telepain Clinic, on zoom. They start studying functional MRIs of the brains of people with fibromyalgia.

They use a thumbscrew. They put a measurable amount of pressure on a person with no fibromyalgia. The person reports 3-4 out of 10 pain. The brain lights up a certain amount in the pain centers on the MRI. The doctors can SEE it. Then they test the fibromyalgia people with the same amount of thumbscrew pressure. The fibromyalgia people report 8-9/10 pressure and they are not lying. The pain centers in the brain light up correspondingly more. So they ARE feeling 8-9/10 pain.

Is this a muscle problem? A brain problem? Or both?

It appears to be both. Chronic fatigue and fibromyalgia and other disorders with pain out of proportion to the physical findings were being called “central pain processing disorders”.

I thought of chronic fatigue as a sort of switch. As if at a certain level of stress or exhaustion or infection the body would throw a switch. And force the person to rest.

I wondered if the type B people just rested and got over it, while the type A people fought it like tigers. Which seemed to make it worse.

And now we have Covid-19. The study getting my attention is saying that 20%, or 1 in five people age 18-64, have Long Haul symptoms. Over 65 it is 25%, one in four. And it can happen in people with no preexisting conditions. Preexisting conditions or not, this sucks. The two biggest complaints are lung related and muscle related.

I have chronic fatigue following my third pneumonia in 2014. I might be just a little type A. I went back to work too soon (6 months after the pneumonia) and after a half day would crash asleep at 3 pm. For another 6 months. Now that I have had the fourth pneumonia and have been off for a year and been on oxygen, I feel better than I have since before 2014, even though I still need oxygen part time. Guess I was in denial about the chronic fatigue. NOT ME!

So, dear reader, learn from me and don’t be like me. The biggest thing that I have had to get through my thick type A skull is that when my body wants rest, I need to rest. This can be hella annoying, as my son would say. I have to pay attention to my energy level and decide what to do. And some of my precious energy has to go to things like laundry and paying bills! How very frustrating. My markers are energy level and also pulse. My pulse tells me when I need oxygen and when I am really sick. With the first pneumonia back in 2003, influenza, my resting pulse stayed at 100. My normal then was about 65. When I stood up, my pulse went to 135. It was EXHAUSTING to stand up. I had to rest half way up one flight of stairs. It was hard to walk two blocks to pick my daughter up from primary school. And I looked fine. Neither my doctor nor I could figure it out. I finally guessed that it was lung tissue swelling and hoped it would go down eventually. It did, but it was a full two months and my doctor partners thought I was malingering. I tried not to wish it on them. It sucked and I felt awful back at work, but my pulse had finally come down. We even did a heart ultrasound, but all it showed was a fast heart rate. My chest film looked “normal”, because the tissue swelling is throughout the lungs, so it cannot be seen on a chest xray. It was very weird, but I recovered. And all the descriptions of Long Covid sound like my lung swelling. Fast heart rate, difficulty breathing, muscle pain and terrible fatigue. Go back to the couch.

Go back to the couch and wait. Do what you have to but if your heart rate is over 100 when you get up, you have to rest. Otherwise you will prolong it. Seriously.

More later. Peace me and sending love and peace.

Anna’s hummingbirds can survive below freezing temperatures by slowing their metabolism at night, until it warms up in the morning. Talk about resting!

city versus country

A friend comments that the country used to outnumber the city folk but now it’s the other way around, and that the split in our country is about values.

Hmmm. I am thinking about that. I am a city girl AND I am a country girl, both. We moved every 1-5 years and I was in cities and in the country. However, my family also had two anchor points. My mother’s family has shacks on a lake in Ontario, summer shacks. My father’s parents had a house on the beach in North Carolina on the outer banks. Wind and water in both places and we never watched tv in either place, because we were outside until we fell exhausted into a tent or into bed.

I don’t agree with my friend. I think we ALL share some values: that no one should go in a school and shoot kids, or a church and shoot people, or a store and shoot people. Right? We all agree on that if we are sane. That is a starting point. I read the mediation books when my (now ex-) husband was getting certified. The mediators start by trying to find the common ground.

I am pretty much equally comfortable in my small town, the woods, on the water and in cities. My friend warned me about Seattle being dangerous now. Well, it’s a matter of scale. I went to high school in Alexandria, Virginia and I lived at 3rd and Massachusetts in Washington, DC back in the 1980s. I was pretty careful just walking to the metro in that part of Washington at that time. I pay attention in Seattle, but in these cities I know what I am paying attention to. I ended up alone on a metro car once at night. A man got on at the next stop, looked around the car, grinned and came and sat next to me. I thought, oh, Sh-t, this is not good. I ignored him and continued staring at my book.

“Hi, what’s your name?” he says.

“I am reading.” I say coolly.

“Come on, honey,” he says.

I shut the book, stand up, and he lets me pass. I stand by the metro door until the next stop, get off that car and get on another car with more people. The car did have emergency alarms, so I could have hit one, but he let me by so I didn’t. I was kicking myself for being alone on the car, but honestly: what a stupid nasty male chauvinist threatening jerk. I shouldn’t have to worry about this crap. But after that, I didn’t get lost in a book on the metro because I had to pay attention to avoid being alone on a car. Annoying as can be.

My friend says he gets lost in cities. I don’t. I start building a map in my head when I arrive in a new city. It is completely automatic. If I am driving, it’s based on the highway. If it’s by airplane, it includes the airport, the hotel, the conference center. I have been to San Antonio once, but I stayed at a hotel along the River Walk and the conference center was towards the center and south. I could draw part of the city, still. I love maps!

I can’t say that I would be comfortable if dropped in a city in another country, necessarily. I was pretty happy on my trip in March, which was abroad. There are levels of familiar and what are the languages in common? Are there any?

What are these values that people might be split on? I read that people are polarized and can’t get along, but I don’t agree. I did Family Medicine in this town of 9000 for 21 years, and I had people from town, from the county and eventually from three other counties. I had nine people who had to take a ferry to see me. Talk about inconvenient for them. My people are all races, all genders, age zero to 104, all different stripes of politics. I don’t care what their politics are: I am there to see if I can maintain or improve their health. This could mean anything from encouraging exercise, doing a pap smear, diagnosing diabetes to discussing hospice and end of life issues or telling someone that I do not think they are safe to drive. This is not about “pleasing” people: recognizing opioid overuse in a person does not endear me to them. But it is about doing the best I can for people and with people. And isn’t that a value we all share too?

Now we have common ground, two areas to stand. Grow that space. Peace me, work for justice and kindness and peace to you.