Category Archives: fibromyalgia

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What do you see?

What do you see in this rock?

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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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beach walk

My daughter is home and we went on a beach walk yesterday! The stupid oxygen keeps me from going fast. She went for a bike ride afterwards. Hooray!

Yesterday evening she brought up social distancing and how careful she should be. She has about 5 friends who are home that she is going to walk with. I am still wearing a mask over my oxygen tubing most places. She will unmask if they are vaccinated and they don’t have a cold or anything else. Even a cold would make me worse at this point. It makes me grumpy to be vulnerable, but I appreciate the discussion.

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outfits inappropriate for work 2

When pneumonia nearly takes me out, I want COLOR. I think I managed it with this. The skirt is not only silly, but a little short for me to wear to work….

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survived

Pneumonia is weird. I look good after I manage to not die from it. I start going outside a little more and I run in to people. “You look good,” they say.

“I nearly died of pneumonia.” I say.

“….but you LOOK good,” they say, looking confused.

It was weirdest in 2012 and 2014 when I had strep A and sepsis symptoms and couldn’t get any doctor in town to believe me. The out of town Pulmonolgist and Psychiatrist did. The ENT didn’t really care. The Neurologist said that it was not myasthenia gravis or one of those weird muscle diseases. How do you KNOW, I asked. “Your lungs are getting better and they wouldn’t be if it was one of those.” “Oh. So this is just really bad strep A in my muscles.” “Yes.” “And I will get better?” “I think so, eventually.” “But we don’t know and don’t know when.” “Correct.” How non-reassuring. The Infectious Disease doctor said we don’t know how to treat you but you can TRY taking one 250mg penicillin tablet daily. Didn’t work. I got nauseated pretty soon. In contrast to when I have pneumonia and can take 500mg four times a day. It’s ridiculous. The asthma/allergy testing was all negative and after the 2014 round my lungs healed.

I hope they do this time too.

I wonder if people will have the same, “Hey, you look really good,” as much with me being oxygen. Except I have the mask over the oxygen tubing (talk about tangled!!) so they can’t see my face anyhow.

“Hey, how are you?” someone says.

I hold up the oxygen tubing.

“OH.” they say.

“Okay,” I say.

Okay.

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Free fall

I feel safest with the fallen

Everyone falls
No one is good

I am afraid
Of the people who
pretend to be good

the fallen
don’t pretend

We fell down down down
like an eternity
like it would never end

We were bad
depressed drunk addicted
liars cowards thieves

We held our arms out
There was nothing to stop us
Free fall

All we could do
was pray

We prayed
As best we could
With all our hearts
If we had no words

Falling angels
Caught us

Helped us
Claw our way back

Some people fall
Are still falling
Fall forever

Are they crazy
Or do they choose
To stay with the angels?

The people who say
They are good

We look at them

We know they haven’t fallen

They are lying to us
They are lying to themselves
They are lying to the Beloved
They want to be good
They want what they say to be true

But it isn’t

I meet the eyes of another fallen
Knowledge

I can see the memory
Of infinite free fall
In their eyes.