Category Archives: hope

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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!

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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.

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too lips?

Grief and anger over shootings.

Stages of grief and Stages of peace. How do we reach and help the people who feel the urge to kill? How do we grieve the children? How do we peace the world?

For Cee’s Flower of the Day. These are from my CSA box, my weekly box from Red Dog Farm.

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website ethics and mine

Two days ago I wrote to the owner of the website that “separated” me for “not explicitly breaking the rules”.

I have not gotten an answer.

Doesn’t matter, you say. I disagree. I think our ethics matters and it matters on line. Isn’t that part of what we are fighting about?

Let’s drill down. The editors stated on this obscure not to be named site that they were tightening rules and removing write-ups that should be logs or are just not high enough quality, and letting the writers repost them as logs. So far they have removed over 250 of my writeups. Ironically, I was one of the two most prolific writers in the last year. Let’s kill the golden goose because she’s annoying, won’t we? The other writer has not been “separated”.

I note that they have removed my write up called “birth of ——–“. Now, this interests me. This was a well received write up, had up votes, and was the start of a category. The category was people explaining how they chose their on line name.

So: the editors are liars and abusing their power. They have removed a well received and well liked write up because they have personal animosity towards me. I have protested the removal of 250+ writeups and asked that they be reposted as logs. No answer.

The other writeups in the how I chose my name category are still there. So this is PERSONAL and the editors of the site are unethical.

Therefore, I hope the site dies. Or gets rid of those editors. I think I want it to die, even though it has writing by my sister. This does matter. As a species, we will either learn to be fair and human on line as well as off line, or we will end in conflagration. The site will certainly not be there if we start lobbing nuclear bombs at each other. The owner works for the US government. Why is he/she not paying attention to this obscure website that he/she owns?

Whether or not the world burns this month, if the editors are manifestly unfair on the site, the site will die and deserves to die. I wish that I could have my sister’s drafts before it shuts down.

I ended my email that is not answered with this: Good luck. I hope that ethics matters to both of us.

Thank you.

on line site name

_______________________

I will not name the site here or anywhere again, until and unless those editors are shut down and the site becomes ethical.

We are fighting this fight as a species, as humanity. We have to learn to be as ethical on line as we are in person. Well, you say, some people AREN’T ethical. Yes, that is true. As a rural physician, my goal is to take care of ANYONE WHO COMES IN. The emergency room physician cares for the family of four hit by the drunk and the drunk too, even if there is a dead child in the family of four. We set our judgement aside and do the best for each and every patient, regardless of the story. At least, that is the goal. It is the highest goal I know of.

Blessings and be your ethical self on line. As my children said to me when I threw their father out of the house once, “We don’t care what he does. We want you to be polite to dad no matter what.” And they were RIGHT! We answer to ourselves and to the Beloved and to our children.

Blessings.

The photo is me and my sister, dancing before my wedding in 1989. She died of cancer in 2012.

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from blue to breathe

I attended a medical conference on line yesterday and today and it made me very blue. At first it just frustrated me, because it is about increasing behavioral health access. Isn’t that a good thing? Yes, but they completely missed the biggest barrier for primary care: TIME.

With the current US medical corporate money extracting insurance non-caring system, primary care is increasingly forced into 20 or 15 or 10 minute visits. I fought my hospital district when they said “See patients for one thing only.” I replied “That is unethical and dangerous: if it is a diabetic with an infected toe, I HAVE to check their kidney function, because antibiotic dose must be adjusted if their kidney function is reduced.” And there are at least two and maybe three problems there: infection, and if the diabetes is out of control that worsens the infection, and then kidney function. And actually I have to be sure anyone going on antibiotics has good kidney function or adjust my dose. I am very very good at this, but it takes time. I can work with complex patients, with veterans, with opiate overuse, with depression: but none of this is a simple template slam dunk. A study more than a decade ago says that the “average” primary care patient had 5 chronic illnesses. My patients don’t want to come in for each one separately and anyhow, if they have kidney problems I have to pay attention when I pick medicines for their high blood pressure. None of it can be separated out. That is why medicine is complicated.

Someone asked why can’t I just post the price of a “simple” visit for a sore throat. But a sore throat can be viral, can be strep A, can be a paralyzed vocal cord, can be a throat abscess, can be vocal cord cancer. I can’t tell ahead of time. I can’t. Early on during covid, a patient called and wanted a Zoom visit for abdominal pain that he said was constipation. I said “No, I can’t do abdominal pain over Zoom safely.” I can’t ASSUME it is constipation. It was appendicitis and he had his appendix out that evening. He called from his hospital bed the next day to thank me for making him come in.

The conference made me blue because they ignored my questions about why they were not advocating for primary care to have more time with patients. They claim to be all about change, but changing the US medical system? Nope. Do not want to talk about that. But I do want to talk about it. You can help by letting Congress know: single payer or medicare for all. That insurance company gets 20 cents of every dollar to profit and wastes tons of money forcing doctors’ offices to call for prior authorization. And if we have single payer, think of all the small businesses that will start because the terror about health insurance will disappear! I think it would reduce everyone’s stress, except the insurance CEOs. And they have earned more than enough, goodbye greed.

I am also tired of specialists telling me that primary care needs to do MORE. When I get told that I am not doing enough about hypertension, bladder leakage, depression and stopping smoking, and then 20 other specialists lecture me. Ok, so one minute per topic to fulfill what all of them think I should do? I want a primary care conference where primary care doctors are celebrated: cases are presented where the specialist says what a brilliant job the primary care doctor did.

I received a consult letter from a cancer doctor a few years ago. He wrote that I had diagnosed the earliest case of chronic leukemia that he had ever seen and that he was impressed and the patient would do fine. That’s the conference that I want to go to: where primary care and specialists talk about that and we inspire more doctors to do primary care.

You can learn more and how to talk to your congressperson here: HealthCare Now: https://www.healthcare-now.org/

or at Physicians for a National Healthcare Program: https://pnhp.org

And put your vote and your money towards healthcare, not health insurance.

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Stages of Peace Playlist I

Dang, I’ve got a lot of stages. So it is a long playlist! I can’t complain (yes I can), after all, I wrote the stages. Hmm, to work, to work, to play, to PEACE.

Twisting words- The Grass is Blue – Dolly Parton

Confusion- Get it Worked On -Delbert McClinton

Denial- Old Number 7- The Devil Makes Three

Bargaining – Gallows Pole- Alvin Youngblood Hart

Anger- Joanne Little- Sweet Honey in the Rock

Bitterness -The Wound That Never Heals – Jim White

Revenge -Silver Dagger- Dolly Parton

Acting Out – Pills I Took- Hank Williams III

Oppositional Defiance- All Hail- The Devil Makes Three

Grief -Days Like These – Over the Rhine

Acceptance- In my time of dying – Alvin Youngblood Hart

Forgiveness -Jesus on the Mainline – Mississippi Fred McDowell

Healing- I be your water- Sweet Honey in the Rock

Hope – So Glad I’m Here- Sweet Honey in the Rock

Reconciliation – You are loved, Victoria Williams

Peace – Everybody Ought to Know (and) Redemption Song- Sweet Honey in the Rock