Category Archives: chronic pain

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heart of clay

I look for a broken heart on the beach. I nearly miss it, but here it is. I nearly miss it because it is so large. A clay heart, broken all the way through.

Here is a stealthie with my foot for scale.

Shoe selfie for scale, at the base of the broken clay heart.

Part of the cliff has recently collapsed. The heart must have broken during the slide. It will wash away in pieces now. Here is the cliff and you can see the scar of the slide. And the broken heart.

broken clay heart in the wall of the cliff, with the scar of a slide collapse

I tried walking the beach without oxygen. I did pick up rocks. I took a pulse oximeter with me. Carrying maybe three pounds of rocks, my oxygen saturations drop. Not well yet. 87 or below is not ok. It feels awful and exhausting too. Like being at a high altitude and not used to it. A pulse of 130 also does not feel great, normal being 70-100.

Pulse oximeter, with pulse 130 and oxygen saturation 87.

Thank goodness for the oxygen and the tanks that let me be mobile. Blessings and take care of your heart.

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Oxygen testing

“If oxygen might help with chronic fatigue, as it has helped you,” a friend asks, “how do I get on oxygen?”

Complicated answer.

First of all, one of the things that is not clear, is what recovery looks like. I think I’ve had low grade chronic fatigue for the last 7 years compared to my “normal”. Now, will I get off oxygen? I don’t know. I am hoping for September but it may be that 7 years of low grade hypoxia means I have lung damage and no, I won’t get totally off oxygen.

They have apparently recently made the guidelines for oxygen more stringent. I sort of missed that update, even though I just recertified in Advanced Cardiac Life Support. You now have to have an oxygen saturation that goes to 87% or below. It used to be 88.

Now, you can test this at home with a pulse oximeter. In 2005 after the influenza, I held my saturations but my heart rate would go up to 135. Which means that I walked across the room very very slowly because a heart rate of 135 sustained does not feel good at all. Normal is 70-100 beats per minute. You can measure pulse with just a second hand, number of beats in a minute. For oxygen saturation, you need the pulse ox and it will measure both heart rate and oxygen saturation.

So: measure pulse and saturation at rest first. Write them down.
Then walk. I usually send patients up and down the hall three times then sit them down and watch the pulse ox. In some, the heart rate jumps up. If it’s over 100 and they are getting over pneumonia, I don’t want them back at work until it is staying under 100. Or if sitting they are at a pulse of 60 and then walking it’s 95, well, I think that person needs to convalesce for a while yet. They can test at home.

As the heart rate returns to the baseline, the oxygen level will often start to drop. Does it drop to 87? Describe the test to the doctor and make sure the respiratory technician does it that way and also they should do pulmonary function tests. Mine were not normal.

Now, what if the oxygen doesn’t drop to 87? We are not done yet. What does the person do for work or do they have a toddler? If they have a toddler do the same test carrying the toddler: they sit down, exhausted and grey and this time the oxygen level drops below 87. If they do not have a toddler, do the test with two bags of groceries. Or four bricks.

When I did the formal test, the respiratory therapist said, “Let’s have you put your things down so you don’t have to carry so much.”

“I’d rather not.” I said, “I want to be able to walk on the beach, so I need the two small oxygen tanks, my bird book, camera, binoculars and something to eat.”

“Oh, ok,” she said.

So I did the test with two full tanks of oxygen, small ones, and my bird book and etc. I dropped like a rock loaded. I think I would have dropped not loaded but perhaps not as definitively. Still hurts to carry anything, even one tank of oxygen.

We are making a mistake medically when we test people without having them carry the groceries, the toddler, the oxygen tank. My father’s concentrator is pre 2013. It weighs nearly 30 pounds. Now they make ones that weight 5 pounds. Huge massive difference.

Good luck.

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Judgement

Why are the roses caged, you ask? What did they do? Nothing, they are being protected. I found that rose and transplanted it years ago, but our deer eat the buds every year. This is the first time that it has bloomed in the 21 years I have lived in this hours. Isn’t it beautiful?

I am listening to this:

I wrote this poem today. This is one of the poems where I have no idea where it will go when I start writing it. I start writing about judgement and it never ever goes where I expect. The poems go where I want to go in my deepest heart, in my soul. I am never where the poem is, the poems show me the way….. Then I try to go there. And it can take years….

I am being judged
and watched

I have no issue with the Beloved

it’s the humans I don’t like

I twist people’s words
but not with malice

when the antibodies are up
it is hard to communicate
hard to explain
it is hard just to survive
and I might be focused on survival first
and comforting the people around me second

can you blame me?

how near to death have you passed?
and how often?

first pneumonia
heart rate 135 when I stood up

my doctor and I could not understand it

my doctor partners thought I was lying
in 2003

second pneumonia
after my sister’s death
which was bad enough
but the legal morass that she had set up
with her daughter as the center

pitting me and her daughter’s birth father
and my father
against all the PhDs in the maternal family
smart, smart, smart
yet emotionally stupid

my niece is not an inheritance
to be passed to whom my sister wants

she reluctantly came home
and the myth endures
that this is an injustice

third pneumonia
one year after I find my father dead
triggered by grief
and the outdated will
and the mess he leaves

and I don’t even get sued
about the will
for another year

endure that
endure endure endure
endure hatred
endure triangulation
endure meanness
unwarrented

I do not care
if you want to believe
what you want to believe
it isn’t true
and it hurt

and I learn to let go

with the fourth pneumonia

I see the liars surrounding me
downvoting
yes, it does matter
except that one that I trusted
that mentored me

has lied all along

that hurts too

let it go
let it go
let it go

and I let it go

each pneumonia is a time of change
creativity
I am lonely and sick
and not trusting

as I improve
slowly, slowly

I wander garage sales
estate sales

and find things
things that are beautiful
things that enhance my joy

at the start of covid
I was so down
I was so sad
I wanted to lie in the street
and give up

the Beloved sent a spirit
he says he is no angel

I see angels bright and dark
after all they all fall

just as humans do

we all fall
we all fall down

try to look perfect
try to look virtuous
tell yourself that you are good

that is the biggest lie of all

the bad parts of your spirit
locked in the basement of your soul
howl
howl and want to be freed

and if one gets out
and you reject her or him

he will return with nine friends
yes that is what the bible says

she will return with nine friends

he/she MONSTER
will free the others

and you will do bad things
you will be terrible
you will hurt people
while you try to contain
while you try to lock away
while you try to chain
your monsters
your evil
your self

let them go
let the monsters go
they are howling
I hear them all the time
when I meet you
when I speak to you
the monsters howl at me
begging to be loved

yes, they want to be loved
and I love them

but if I mention them

you get that look
of horror

someone sees
me
someone sees
my evil
someone sees
what I hide

I can’t help it
raised in alcohol neglect and lies
on my own
as soon as I can walk

but I can’t walk away
at nine months

so I find other escapes
words
songs
books
poetry
rhymes
numbers

and my sister
when she is born

I do all the mothering

that I have longed for

even though I am three

we were talking about your monsters
not mine

you must go in to the cave
where you have locked them

and free them all

fall on your knees

and say
forgive me forgive me

for I have sinned

bow your head

and hold out your arms

and what, you say,
will the tortured monsters do?

will they smite you?
will they burn you?
will they lock you in their place?

mine didn’t
mine were babies
grief, fear, shame
and I embraced them
carried them up to the light
and care for them

wash them
diaper them
feed them
wrap them in warm blankets

and love them

until they stop crying

and begin to grow

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Fierce woman

Ok, who is this fierce woman?

It is not me.

It is not my daughter.

It is a relative.

It is not my mother.

It is not my grandmother.

I have pictures of all of these women with that expression.

This is Mary Robbins White, my grandmother’s mother.

This is the line of women: mother to daughter all the way down.

What is passed from mother to daughter and mother to son? Besides the fierce expression?

Mitochondria. The mitochondria are only in the egg, not in the sperm. My grandparents, had three children, two boys and my mother. My mother passed the mitochondria to me and my sister, but the men would not contribute mitochondria to their sons or daughters. It is amazing to look at that serious face with intensity and concentration and see that passed down to my daughter, my son and my niece….

Guess who is who in the following photographs. I took two of them.

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get real girl

While I organize, I find things. Most of the barbies apparently got blown up with firecrackers one time when I was not home. Both of my children were involved with this. “Not the babies,” says my daughter. “Also not the Get Real Girl, since she is yours.”

Well, the Get Real Girl is the camping one, with backpack, GPS, camping stove, frying pan and fried eggs. Apparently she is not a vegan. She acquired the diving equipment from a barbie set and was all ready to go in the water (no wet suit though) when one of the barbie babies landed in her lap. Gosh, now what! As you can see, they seem to be bonding even though Get Real is not going diving today. I will have to see if there is another Action Figure around the house that could hold the baby while Get Real dives….

We had another Get Real Girl, one who plays basketball. I have found a lower leg and foot. I suspect that she met her fate with the barbies, poor thing. Maybe my kids will give me another Get Real Girl for Christmas…..

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outfits inappropriate for work 3

Ok, maybe it is not inappropriate for work. But it would be a little weird for work… I was going in the woods with my oxygen tank. “Local doctor of 21 years found eaten by cougar, which then died because it couldn’t digest the oxygen tank.” Heh.

Listening to this, fabulous!!!

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Songs to raise girls: Bessie the Drunkard’s own child

I am posting this from another site, originally posted November 2016. I am posting it because of a comment on a paper in my town about “homeless drug dealers”. It’s not the drug dealers that are homeless, it’s the addict. Ok, you can definitely have an addict dealer… But I worked hard to treat any kind of addiction, not only because of the patient, but also the family and especially the children. And every patient was a child once….

This is another temperance song that my mother taught me, learned from her father. Both of my mother’s grandfathers were Congregationalist Ministers in Iowa.

Out on the stormy night sadly I roam.
No one to love me, no dear pleasant home.
Dark is the night and the storm rages wild.
God pity Bessie, the drunkard’s own child.

Chorus:
Mother, O why did you leave me alone,
No one to love me, no dear pleasant home.
Dark is the night and the storm rages wild
God pity Bessie, the drunkard’s own child

We was so happy til father drinked rum.
Then all our trials and troubles begun.
Mother grew weary and wept every day.
Brother and I were too hungry to play.

Barefoot and hungry we wander all day
Looking for work, but “too small” they all say
On the damp ground to lay my head
Father’s a drunkard and Mother is dead.

Thus the two wandered, ’til one stormy night
Brother and sister both faded from sight
Then gazing at them, sadly I said
“Father’s a drunkard and Mother is dead.”

Cheerful, right? Again, I know the tune and only have the chorus memorized. My parents quit singing it in front of me so that I wouldn’t sing it at Show and Tell.

And small children shouldn’t hear this sort of thing, right? I don’t know. I learned an awful lot about the dark side of the world and danger from these songs. I found them helpful. I think they influenced me to be careful….

And think of the refugee children and children everywhere. This is still happening.

here: http://www.pdmusic.org/1800s/66fadamid.txt
and here: http://mudcat.org/thread.cfm?threadid=57166
The tune I learned is slightly different and darker than this: http://mudcat.org/@displaysong.cfm?SongID=6196
And some overlapping words with a different tune: https://www.youtube.com/watch?v=7ooDfYaH08E and https://www.youtube.com/watch?v=9KGiFkcxOus

The photograph is my maternal grandfather, F. Temple Burling, sitting on his grandfather’s lap. His grandfather was Morris Temple. My grandfather taught my mother this song and she taught me.