Tag Archives: love

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Not immune

I am attending multiple Zoom conferences on Long Covid and Chronic Fatigue and PANS/PANDAS and fibromyalgia. The speakers are talking hard science, digging in to the immune system to figure out what is wrong. Then they can find a drug to fix it.

Maybe it doesn’t need to be fixed. I think the immune system is smarter than we are and it knows that Covid-19 is a really really bad virus. What the immune system wants is to keep from getting any other infections so it shuts us down. It hits the chronic fatigue button, so we stay home or in bed. It hits the fibromyalgia button so that it hurts to move: we stay home or in bed. It hits the PANS button so that antibodies seriously change our behavior and we stay home or in bed. Anyone see a theme here? I think that the immune “over-response” is not an over-response. It’s not broken. It is trying to reduce exposure and just maybe we should pay attention. I thought that in residency, in the early 1990s, when chronic fatigue patients would interview me to see if I “believed” in chronic fatigue. Heck yeah, I said, but I don’t know what it is or how to fix it. My chronic fatigue patients had something in common: they were all either working 12-14 hour days continuously when they crashed, or they overworked and had insane stress, deaths of loved ones, car wrecks, accused of a crime, something horrible. The workers all wanted “to get back to where I was.” I would ask, “You want to work 12-14 hours a day again?” “Yes!” they’d say, “I want to be just like I was in the past!” “Um, but that’s what crashed you. Do you think maybe your body is not up to that?” “FIX ME.” I would try to improve things, but fix them back to what crashed them? No way and anyhow, that is not really sane.

There are some levels of illness where we have to intervene. In really bad PANDAS, antibodies to the brain are followed by macrophages that destroy brain cells. I was horrified and wanted to run around screaming “NOT MY BRAIN!” when I heard that. Then I thought, don’t be silly, I am in my 60s and if I had brain eating cells it would have happened by now. I consider myself really really lucky to have the mildest version. At least, that’s what it seems to be. (Officially we don’t believe in PANS or PANDAS in adults in the US but we do in Europe and Canada. Ironic.) With that version, especially in children, I am all for intervention, as soon as possible. And it’s not that I do not think we should intervene in these illnesses. I just think we need to step back and think a little and just maybe listen to our bodies and listen to the immune system. Slow down. Breathe. Watch some stupid cat videos. Whatever makes you relax and laugh. Reduce stress. Limit stupid hyper news to 15 minutes a day and not before bed, ok? Reduce the drama.

I am liking movies less and less. The drama bugs and bores me. I might last an hour. I have nearly quit going to our downtown movie house because it’s always “moving” and art films. Bleagh, drama. Also when it’s about illness or addiction, I want to argue with it. Easy lying endings which are nothing like reality. I like cartoons and sometimes superheroines, but it’s all drama too. I am tired of people behaving badly and don’t want to watch it on tv or a movie. There’s enough for me in the real world. I think it’s time to bring back musicals. I would watch them. Maybe. My father’s last movie was Blazing Saddles. He refused to ever go to another movie. I think I understand that now.

None of us are immune to stress or immune to infection. A person might be immune to Covid-19, or they might be immune until the tenth or hundredth strain shows up. I chose Family Practice for my specialty because I wanted to have children and be able to see them. I thought about Obstetrics-Gynecology or General Surgery, because I loved babies and loved surgery, but the Ob-Gyn residency was 4 years and General Surgery was 7 years and I was starting medical school five years out of college. Choose the more flexible and portable specialty and go rural.

Doctors and nurses are burning out because hospitals and administrators “maximize production”. Hospitals and administrators are stupid and destroying medicine. It’s not about money, it’s about helping people and science and healing. Having it be about money is soul-destroying and causes moral injury to any ethical provider. If we’d prefer unethical ones, keep on the present path. Otherwise we need single payer health care so that any physician or nurse can take care of whoever shows up. The system is breaking down more and more and it is hard to watch. Another nail of stress in the coffin of ethical medicine. I suppose when enough people die, change will come.

My working theory is that anyone can get one of these immune system illnesses: chronic fatigue, fibromyalgia, PANS/PANDAS and so forth. Medicine says that Hashimoto’s Thyroiditis, antibodies to the thyroid is the most common autoimmune disorder, but that may change. The evidence is mounting that Long Covid and these other “vague” illnesses are immune system shifts. Immune systems in “Code Red”, let’s not catch anything else. Are they an illness or are they our immune system trying to keep us quiet to protect us? I think the latter. Time may tell. I am listening to the science and listening to my body, both.

The photographs are from 2016, when a flock appeared in my yard. They demanded money to be moved to the next house.

For the Ragtag Daily Prompt: fiddlesticks. Oh, fiddlesticks, we have to figure out the very very complicated immune system. Or listen to it.

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Flocked?

My daughter got here from Denver on Wednesday early. I picked her up in Seattle, we met a friend of hers for lunch, and returned to Port Townsend. I am so happy to have her visiting!

On Thursday we walked from East Beach on Marrowstone Island south to Nodule Beach, where it looks like rock eggs are birthing from the sandstone. What does one call a group of those rocks? A flock? There is flocked fabric, after all, why not rocks?

And what about the sea anemones? What is a group of them called? They really like certain rocks!

It was a beautiful day and a super low tide and we tried not to walk on the exposed eel grass or the sea anemones. The rocks and sand were fine!

And we met a hermit crab too.

For the Ragtag Daily Prompt: flock.

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Unvitiated

Wondering why vitiate
ads from drinking carbonate
seems a loaded silly freight
puzzle future centuries late
time foils stupid race hate
future can’t tell the state
from all attempts to carbon date

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For the Ragtag Daily Prompt: vitiate.

I look for songs with the word vitiate: pretty much heavy metal. Let’s go with this song instead:

We sang the lullaby in our last concert. It is gorgeous. Unvitiated.

I took the photograph this month at Kai Tai Lagoon.

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Sherbet skies

We sail on a jaunt into sherbet skies.
The water is gold, the wind is light.
The sky changes color and charms our eyes.
The light is gold sliding into the night.
The boat glides through the water with gentle ease.
Light hand on the tiller, our wake lights up.
We pass peaches and cherries and crackers and brie,
pour tea into each other’s cups.
It’s cooling off so we sit very close.
Phosphorescent creatures trail behind.
Warming each other as we steer the boat.
Darkness falls and we don’t mind.
The sherbet skies call us out to roam
But we are ready to come about towards home.

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For the Ragtag Daily Prompt: jaunt.

Hoping for more peace and tolerance on Juneteenth.

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Forever or not?

Once someone has cancer, do they have it forever?

I think that is a complex question. But one example comes to mind.

An older woman, in her early eighties, is seeing me. She wants to go back on hormone replacement.

“But you have a history of breast cancer.” I say.

“That was six years ago. And I took that horrible tamoxifen for 5 years and I still am having hot flushes after a year off it and I am sick of it. Give me hormones.”

“Hmmm.” I say. “Let me do some research.”

I call the oncology group south of us. This is over ten years ago when we had no oncologists in our county.

“How old is she?” Her oncologist is digging up her records. “Ok, got her. Hmmm. Well, she had a stage one cancer and a lumpectomy and five years of tamoxifen. THAT cancer is gone, for sure. If she wants hormone replacement, it puts her at a bit more risk for a new breast cancer, but the old one is gone. As long as she understands the risk.”

My patient is back and we negotiate. “Ok, the oncologist says your previous cancer is truly gone, but hormones put you at risk for a new breast cancer. At least, raise your risk a little.” Age is the biggest risk in women, if they do not have the abnormal BRCA I or II genes. “Also, if we have you on hormones, you have to do your mammogram, because I’d want to catch any cancer early. That’s the deal.”

“Fine, I want the hormones.” She signs a consent that I’ve prepared and we put her back on her hormone replacement.

“I want to hear from you, ok? Whether it works?”

She calls in a week, delighted. “No more hot flushes! I feel great!”

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I took the photograph at Mats Mats Bay last week. There is a sign about osprey nests. I look up and think, oh, yes! Pretty obvious if you look up!

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I don’t remember her exact age and I don’t remember if the five years was tamoxifen or one of the other hormone blockers. She could have been in her seventies. At first I thought, no way back on hormones! Then I thought, quality of life is important. Maybe I choose this photograph because the nest is out on a limb.

Some cancers ARE currently forever, especially those that are stage III or IV and metastatic. Maybe they won’t always be forever.

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Mica

I found this rock on Marrowstone Island, last week. All of the rocks are bright in the sun, especially right after the tide washes over them, but this one stands out.

The surface has layers and layers of mica. Apparently there are 57 different mica minerals, here, so I am not enough of an expert to know which it is. I can see the layers of flakes of mica. This is a beautiful rock.

For the Ragtag Daily Prompt: grasp.

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Fear

When someone tries to hit me
I fight back
I didn’t worry much in clinic
even when patients yelled
it indicated they were upset
and usually I knew why

Not much fear there.

So what do I fear?

Abandonment
and lies
the one who says they care
that we will be friends
even that they love me
and later walk away

But that has already happened
more than once
and I survive
and the Beloved is still here
and there
and everywhere I am
and everywhere you are
and everything is connected
so there is no fear
and even a chance
that abandoned
I still thrive

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The photograph is from Marrowstone Island in July 2022.