Monthly Archives: February 2022

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Update on whatever it is I have

I had the heart echocardiogram bubble study. Normal. I really really did not like having the mix of blood, saline and AIR injected and I COULD FEEL IT. My logical brain knew it was going into a vein, but my emotional brain kept yelling “Air embolisms kill people!” Yes, but that is arterial. My emotional brain did not care. Anyhow, it was fine.

Saw the cardiologist who said he can understand why I feel PTSD going into my local hospital. He says I should not need oxygen at age 60 with no smoking. He says “Not your heart.” Yeah, duuuude, I know. He suggests I go to the Mayo Clinic. I agree.

Meanwhile, my primary sent a referral to rheumatology to have me seen at Swedish to confirm chronic fatigue. This is to keep the stupid disability off my back. Swedish rheum doesn’t call me. I ask my primary’s office. Swedish STILL doesn’t call me. I call them, as follows.

“Hi, I was referred to Swedish rheum and I have not been called.”

“Name, serial number, date of birth, length of little toe. Ah, we just received the referral yesterday.”

“Um, I don’t think so. I was referred over a month ago.”

“Uh, oh,” scrabble noises, “Oh, uh, we got a referral in December. We were not taking new patients in December.”

“When did you start taking new patients?”

“Oh, um.”

“When did you start taking new patients?”

“Oh, uh, January. But we only took the ones that called us, because after they call, we then review the notes.”

“So you ignored the referral until I call? How am I supposed to know that?”

“Oh, uh, we will expedite your referral. Maybe even today.”

So THEN I get a message from my primary that they have REFUSED the referral. Great.

Meanwhile I read the cardiologist’s note, which pisses me off. “We will refer you to Mayo Clinic since you have unexplained hypoxia and you think you have PANS.”

I send my primary a very pissed off note saying, could we please phrase this as “a psychiatrist suggested PANS in 2012 and while no one likes this diagnosis, no one else has suggested an overarching diagnosis since that time in spite of her seeing four pulmonologists, neurology, cardiology, infectious disease, four psychiatrists, allergy/asthma, and immunology”. Saying “the patient thinks she has PANS” automatically labels me as crazy and obsessed.

So, it seems I should write a book, about how the medical communities treat patients, including a fellow physician, horribly. Of those doctors, three have treated me with respect and were grown up enough to say, “We don’t know.” The neurologist, the infectious disease doc and the present pulmonologist. All the rest are dismissive and disrespectful. Oh, and the one psychiatrist, but the next one says, “I don’t believe in PANDAS.” I stare at him in disbelief, thinking “they are animals related to raccoons that live in China, you moron”. I did not even know it was controversial until that moment. Holy PANDAS, Batman.

My primary has suggested I write to the Mayo Clinic myself, and I am going to. Because the present people aren’t listening, except my pulmonologist and she is short staffed and looks like death warmed over post call every time I see her.

So it’s all annoying as hell. The cardiologist seemed pretty nice, but damn, he put the same damn rumor down about me self diagnosing. Most of the doctors apparently think I might be a tolerable person if they could just drug me with psych drugs. And from what I have seen, there are many patients who are in this situation.

For the Ragtag Daily Prompt: WAR.

https://pubmed.ncbi.nlm.nih.gov/30724577/

Click to access MECFS_KeyFacts.pdf

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reappearance

I post this poem a year ago in February. It comes back up today. My sister was born in the year of the dragon, so I think of her and miss her.

There appears a flight of dragons without heads

The flight appears
the dragons have lost their heads
they flame indiscriminately
but since they have no heads
the flame does not appear here

they loop in the air
in formation
and are beautiful
nearly silent
no heads to scream
just their wings
on the wind

we stand transfixed
and watch them

the flight
the dragons
who have lost their heads

written February 17, 2021

The headless dragons make me think of the leader dragging countries into war. I hope that other leaders do not follow.

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soft

The Ragtag Daily Prompt today is hard edge, but this photograph gives me the opposite feeling. Oh, I am sure there are edges in the distant mountains and the rocks are hard and perhaps there is a cliff beneath the water, but my photograph feels soft.

We had snow in the night, but it is still dark out. Very cold, but the snow is soft.

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apprentice

Am I his apprentice
or is he mine?

Neither, love,
all is fine.

He says he’s not
in love with me.

Play, love,
climb a tree.

He’s traveled and home
and doesn’t come by.

No worries, love
you won’t die.

I am sad and I miss him,
I long for his face.

It’s just the tide, love,
it will leave no trace.

Why, Beloved, is love
not for me?

Because, darling,
you chose to be free.

______________________

For the Ragtag Daily Prompt: apprentice.

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Mitochondrial envy

Just think if Dr. Freud were alive today.

He’d be studying mitochondrial envy.

After all, the sperm have no mitochondria. Only the egg has mitochondria, so the mitochondria are matrilineal, from the mother only. And it is from mother to daughter to daughter that they are handed down.

I have a photograph of my mother’s mother’s mother. Mary Robbins White. She is looking straight at the camera, no smile, serious. Her thoughts are contained, her eyes give nothing away. I have photographs of my mother’s mother, my mother, me and my daughter, all with the same expression. On guard.

The mitochondria are the powerhouses of the cells as well. They may have been a separate cell that moved in and made a deal with a larger cell: you take care of me and I will power you. An exchange. A bargain. A treaty. Sounds like a sensible female move to me.

My son has my mitochondria. His children, if he has them, will have his wife’s mitochondria. I think he has chosen well. I like her very much. I hope to see grandchildren.

Perhaps mitochondria are the magic that early hominoids worship when they make the earth figurine, the stone figure with generous breasts and belly and hips. The nurturer, the fecund mother, the destroying hungry mother who swallows her children and will not let them go.

I am reading Joseph Campbell, Myths to Live By, 1972. I wonder what he would say about the matrilineal mitochondria, the second set of genetic material in each cell, the part that comes from the mother only. I think he would be fascinated and he would be writing another book.