I never see you again you never speak to me again you never love your bearish parts you never let yourself get angry you never let yourself get sad you never let yourself feel you tell yourself you are happy you tell yourself everything is the way it should be
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.
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.
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.
Thank goodness for the oxygen and the tanks that let me be mobile. Blessings and take care of your heart.
“If oxygen might help with chronic fatigue, as it has helped you,” a friend asks, “how do I get on oxygen?”
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.
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
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.
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.
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