Category Archives: Stages of grief

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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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mother

It is my mother’s birthday today, May 31. She died in May 2000. Helen Burling Ottaway and I miss her daily. Hugs to all the mothers and the fathers and everyone who has lost their mother one way or another.

I took this photograph in the mid 1980s, borrowing a camera from a friend.

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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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Love whole

I loved my liar sister
I love her still

That’s what makes them angry
that I love my liar sister
even though she lied
even though she hurt me
even though she lied to them

That’s what makes them angry
that I love my liar sister
they want to love her lies
they don’t want to know the truth
they want to hide from lies

That’s what makes them angry
they are hella jealous
they want to be loved like that
they want to be loved whole
they want to be loved entire
they want to be loved even when they lie

That’s what makes them angry
they are so afraid to be themselves
they are so afraid to tell the truth
they are so afraid to be honest with each other
they are so tired of hiding

That’s what makes them angry
one says she will be friends
if we only talk about the positive
about my mother, father, sister
I counter: let’s not mention them at all
nor your husband. Not a word.
She doesn’t answer. Silence.

That’s what makes them sad
they don’t want to feel the anger
they deny the heartache
they avoid the longing
they bargain with their souls
they refuse to feel the grief

let us feel the anger
let us feel the heartache
let us feel the longing
let us feel our grief
let us feel our souls

Beloved, we long for you so

Please, Beloved, love us whole

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My sister sent me a t-shirt from Wicked. She died of cancer in 2012. The deaths from Covid-19 and every death brings her back to me. And this song sums up our relationship.

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Normalizing our behavioral health response

I keep seeing headlines: MENTAL HEALTH IS WORSE. TEENS ARE STRESSED. ADULTS ARE STRESSED. DRUGS AND ALCOHOL AND DOMESTIC VIOLENCE ARE UP.

Like they shouldn’t be? This isn’t news. It is expected, because we are in a pandemic, the death rate is up, people are frightened, the scientific news changes daily and now we add a war.

OF COURSE PEOPLE ARE ANXIOUS AND STRESSED. And when stress goes up, substance “overuse” goes up too. Add fenanyl to the mix and the overdose death rate is up. Should I call it the “overuse” death rate to be politically correct? I do think that it is stupid to stigmatize “overuse”. But I also do not like the term “overuse”. Addiction may be stigmatized, but to me addiction means the drug or alcohol or gambling has taken over the person’s brain and it is the addiction that is lying to the person and to me. It makes it much easier for me to watch for relapse if I think of it as the habit or substance in control. There is no stigma there: the person is deeply ill and needs help. Part of the help is recognizing relapse. I look for signs.

With behavioral health we learn to watch for signs. The latest guidelines say that we should screen for behavioral health problems at well people visits. One in ten people are depressed and the lifetime incidence is higher.

The online and news articles sound surprised that there is an increase in behavioral health problems. Why would anyone be surprised? We have evolved emotions along with logic and emotions help us to survive. If you are a child in a war zone or a family with abuse or domestic violence, your brain wires to survive the crisis as best you can. These are ACE scores, Adverse Childhood Experiences. Every child’s ACE score is going up during the pandemic. Adults can develop PTSD, depression, anxiety: of course. This is how our species survive. It isn’t FUN but it is not a disaster either. We can help each other. We can listen to each other. We may have to say “I can only listen to this for ten minutes,” and set a timer. There was a cartoon with a father with a stop watch. The daughter is complaining as fast as she can. He stops her: “There. You have had your one minute of whining today.” Limit the news if it is driving you bananas or you feel more depressed or frightened. Turn off the television: if you live in a safe place, go for a walk. I have goldfinches and pine siskins arguing with each other in my front yard. The cats are hugely entertained by this. The cats only go out with harness and leash. I may need to follow Sol Duc up trees. She leaped on top of the outdoor cat cage yesterday, four feet up. I was surprised. No wonder they can catch birds: from a stand to four feet up and she is about ten months old. And see? We are distracted by the cat and relax a little.

If you are not trying to escape a war zone or something else horrible, give yourself the gentle gifts: things that make you relax. Stupid cat videos, old music, reread a beloved book, a gentle walk outside. Yesterday I “walked” Elwha. He spent the whole walk sitting on the porch watching the birds. Two birds landed in the grass and he immediately morphed to hunter, but was still on a leash. I saw a pair of robins in the back yard. One was holding something in her beak. A gift for the other? Nest building? Nestlings already?

My other go to is the trees. I go lean on a tree when I feel overwhelmed. The trees do not seem to mind. Rocks don’t either and I am very grateful.

Blessings.

Our rhododendrons are blooming.

#ACE scores #behavioral health #emotion #fear #normal emotional response

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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

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Stages of PEACE

We have stages of grief. Now if we are going to make peace, we need to break it down into the stages that we need to go through. I think this incorporates and embodies the stages of grief. We need to plan peace. We need a map to get there, and it is not a simple road. We can’t just say I am peaceful. We must do the work. Here are the stages I can think of and I have certainly gotten stuck in some of these stages. What about you? No…or are you in denial? And if not you, I would bet money that you can name someone who you think or feel is stuck in one of these. Takes one to know one though, right? No, maybe that’s wrong. Stop confusing me!

And maybe we don’t all go through all of these stages. Or go through them in the same order. When I watch families grieve after a death, they often fight. They fight about how to grieve. The family members may be in very different stages, or the family may have stages or roles assigned to certain people, who may or may not accept the assigned role. My maternal family has anger assigned to me. I don’t really care any more. Since I am not angry, presumably they can’t handle anger and need to outsource it. I got tired of saying “I am not angry” and being told that yes, you are angry until I would get angry… you see the problem, right? It got ridiculous. My sense of the absurd kicked in and then I would try to really enjoy being angry. You are supposed to give things your best effort, right? Snort.

Message me if you think of some stages that I’ve missed! Then we can all get to work, on working through these. MAKE PEACE, PEACE OUT, PEACE ME, PEACE YOU, PEACE THE WORLD! Might take a while. Get on it, get to work.

Twisting words

Confusion

Denial

Bargaining

Anger

Bitterness

Revenge

Acting Out

Oppositional Defiance

Acceptance

Forgiveness

Healing

Hope

Reconciliation

Peace

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What does the helmet have to do with this? Nothing… I just like the helmet. I keep thinking that it could be a breastplate instead of a helmet. And it is a clue to my May blogging… where am I? Where is this helmet?