No pandas

Today is PANS/PANDAS awareness day. I wrote this a couple weeks ago.

PANDAS PHYSICIANS NETWORK: PANS/PANDAS AWARENESS DAY

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No pandas

I don’t have PANDAS because in the United States we barely believe in it in children and we don’t at all in adults.

I don’t have PANDAS because even though one psychiatrist said I did, he retired, and the next one says I don’t. Then not sure then no. They don’t agree.

I don’t have PANDAS because my primary care doctor won’t read the guidelines even after I have been her patient for seven years.

I don’t have PANDAS because my pulmonologist has never heard of it.

I don’t have PANDAS because it would be a lot easier to put me on a mood stabilizer to shut me up than listen to me.

I don’t have PANDAS because I am labelled difficult because I am afraid to take a mood stabilizer because I do not get a fever or a white count so my main symptom of infection is that other doctors think that I am manic though I am hypoxic and short of breath. They want to fix my mood while I want to not die of pneumonia, so our goals are at odds.

I don’t have PANDAS because I am a doctor and if I had PANDAS my fellow local doctors would feel guilty that they have told each other that I am bipolar and manic for the last 18 years and have shunned me at the county medical meetings and won’t even send me the invitations, except for the one that forwards them. He says he has given them my email and he doesn’t understand why they don’t send me the invitations.

I don’t have PANDAS because Seattle Children’s doesn’t allow the Cunningham Panel to be drawn and they say there is not enough evidence yet.

I don’t have PANDAS because I can’t afford to pay $925 on my own for the Cunningham Panel and anyhow my antibody level is back to whatever is my new baseline, higher than before no doubt.

I don’t have PANDAS because the other doctors are frightened: if I have PANDAS then who else does and if I have chronic fatigue caused by hypoxia and fibromyalgia and it’s related to PANDAS then who else would they have to test and neuropsychiatric is a whole different thing from psychiatric and we swear that we don’t know what causes chronic fatigue and fibromyalgia.

I don’t have PANDAS because I am an adult who lives in the US though if I was in Canada or Europe I could in fact have PANDAS.

I don’t have PANDAS because in the United States we barely believe in it in children and we don’t at all in adults.

Covid-19: Emotional weather

I do not think of emotions as bad or good. None of them are bad or good. They are information, controlled by electrical impulses and hormones, evolved over millions of years (or endowed by our creator, for those who swing that way).

I don’t dismiss emotions. I listen to them.

I think of myself as an ocean. There is all sorts of stuff happening in the depths that I don’t understand. Probiotics, for example. I don’t take them. If not for penicillin, I’d be dead many times over, from strep A pneumonia twice and other infections. I don’t think we understand probiotics yet. We don’t understand the brain, either.

The emotions are the weather in my life. I don’t really control them but they don’t control my ocean, either. Some days are sunny and gorgeous and then a storm may blow up. I am afraid of hurricanes, one destroyed my grandparents’ house in North Carolina, on the outer banks. I think all the cousins still mourn that house. And I miss my grandparents too, all of them. And my parents and my one sister.

See? The weather got “bad” there for a moment, but it isn’t bad. Storms have their own beauty though we hope to batten the hatches and that not too much damage is done. Maybe there is rain, scattered showers, sun breaks, a lenticular cloud. In the Pacific Northwest on the coast, the weather can change very quickly and we have microclimates. My father lived 17 miles away, but inland from me and in a valley. It was warmer in the summer and colder in the winter.

My goal with my weather emotions is to pay attention to them, let the storms blow in and out, and try not to harm anyone else because of my weather. When my sister was in hospice, we had a sign up in my small clinic. It said that my sister was in hospice with cancer and that clinic would be cancelled at some point with little warning. Patients were kind and gentle with me. And then it was cancelled, when she died. I got cards from people. They were so kind, thank you, thank you, and I could barely take it in. My maternal family then dealt with grief by having lawsuits. I don’t think that is a good way to deal with grief, but we just see things differently. Maybe it’s the right way for them. I don’t know.

Whenever I was having internal emotional weather that stirred me up, I would tell my nurse or office manager. Because they will sense my weather and need to know what is up. I had enormous support from them during a divorce, while my partners treated me horribly. My nurses and office manager knew me and my partners didn’t. My partners distanced me as if a divorce were catching. Whatever. Their loss.

Sometimes patients sensed that I was upset. I could tell by their faces. If they didn’t ask, I would. Bring the emotions out. Reassure them that I AM grumpy but not at them. Stuff in my own life. No worries.

Sometimes clinic is about a patient’s weather. They ask if they can tell me something. Often it is prefaced by “Maybe I need an antidepressant.” or “I feel really bad.” When they tell the story, usually I would say, “I think it is perfectly reasonable and normal that you feel angry/hurt/shocked/horrified/grieved/upset.” And then I would ask about an antidepressant or a counselor and most of the time, the person would say, “Well, I don’t think I need it right now.” What they needed was to know that their weather was NORMAL and REASONABLE.

I am seeing things on Facebutt and on media saying that mental health problems and behavioral health problems are on the rise. Maybe we should reframe that. Maybe we could say, “The weather is really bad right now for everyone and it’s very frightening and it is NORMAL and REASONABLE to feel frightened/appalled/angry/in denial/horrified/confused/agitated/anxious or WHATEVER you feel.” This weather is unprecedented in my lifetime, but as a physician who had very bad influenza pneumonia in 2003 and then read about the 1918-19 influenza, I have been expecting this. Expecting a pandemic. Expecting bad weather. This will pass eventually, we will learn to cope, be gentle with yourself and be gentle with others. Everyone is frightened, grieving, angry, in denial or in acceptance. The stages of grief are normal.

Hugs and prayers for all of us to endure this rough weather and help each other and ourselves..

I took the photograph in color. My program made a black and white version. It looks like the back of a stegosaurus to me, a dinosaur now living as a mountain.

For the Ragtag Daily Prompt: rainbow. Because sometimes the rain and sun combine to make a rainbow.

grounded

Poem: grounded

grief is an ox
that stands in the room with me
and overshadows
everything

no
grief
is a plow
pulled by an ox
I try to guide it
in the furrows

no
grief is the heavy ground
the plow turns it
the ox pulls
I guide it
in the furrows

no
I am grieving
I let it be close
I don’t push it
in to an ox
in to a plow
in to the earth
I let it in
I grieve

nap

I am posting this for today’s Ragtag Daily Prompt: action.

Well, for every action there is an equal and opposite reaction, right? Which could be a nap. This is taken with my phone zoomed from an upstairs window, right in my back yard. Voyeur, yep, that’s me, spying on my Giant Long Earred Yard Rats, also sometimes called Deer.

All of my 911 memories are still swirling around. I think everyone is exhausted and grieving. Please take care of yourselves today and I hope you have a safe place to take a nap, like my Giant Yard Rats.

pigs and fishes

is it ok

if I don’t make sense for a little while?

this is hard

it’s really hard
sometimes
to communicate

I never did
join the mainstream
of medicine

I went to class
to medical school
and wondered
and noticed
that the classes resembled
descriptions of cults
how they train people

and I thought
I am not joining any cult

and I kept my mouth shut

in the elevator
when another student says
“The other day
I threw out all of my husband’s plaid shirts.
I hate them.
They are too low class.”
If he loves them, you’ve hurt him, right?
and I think
I could say
“Yes, I hate it
when my husband
wears my plaid skirt
he stretches them all out
and ruins them.”
I would be outed
even more than I already am
as weird.

I don’t say a word
I just think
words

Medical school is four years
Residency is three
I am quiet there too
impression that I am shy
which is a lie
even so, the faculty fear me

I hear, 25 years later

and I am surprised

5 foot four
130 pounds

what the hell is there to fear?

though a boyfriend says
“You turn into an ogre
when you are angry.”

but I am quiet
in medical school
in residency
except when a patient
needs me
to speak

morph to ogre
morph to werewolf
if needed

as I get older
slowly
slowly
I learn
more subtelty

mostly from my children
who are subtle
and very very smart

at any rate

I never bought in to
the give opioids to everyone

and eventually
it turns out
that my intuition
or instinct
or whatever the hell you want to call it
study of addiction from the experience
and reading in college
matches
the studies
that come out

now I have another one
an intuition

the data is catching up with me

it’s funny
in my small community

I feel so lonely
after 21 years
mother’s death, sister’s death, father’s death
divorce
single mother 2 children
niece don’t go there
I am labeled by the medical community
I hear that the senior doctor
in the community
tells a woman midlevel
at a party
that I am crazy

maybe so

but I was right about opioids

pigs and fishes

is it ok

if I don’t make sense for a little while?

maybe
just maybe

they could listen to me this time

but I don’t think

they
will

that would be ok
but it is hurting people
and I can’t bear that

so I put myself
back in the traces

once in a massage
I thought
I can’t bear this
I am not strong enough
and suddenly I was in a dream world
where my back was enormous
huge
unending
and I thought, oh, I can bear this
thank you
I think

I put myself back in the traces
I am an ox
I plant my hooves

I begin
to pull
hard

pigs and fishes

even as I cry

The photograph is from 2014. Two pairs of glasses frames ago….

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.

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.

you know you are hypoxic when

Darn it. I went from two months of no hiking or beach walking to too fast too much… oops. Injured left tibialis anterior. Oxygen AND a boot. Dang blang curses… guess I have to behave slightly better.

Another outfit not appropriate for work: on the morning before the boot…. I am holding out my hand to be kissed. That area on my lower left shin is red… and later in the day I got in with ortho and got the boot.

flowered dress with long beads and above the elbow white gloves, hey, put that oxygen back on!

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…..