Ogre

I am now a full grown Ogre

We mature at a different rate
than you humans
I don’t really pass as human
but since I am 5’4″
no one guesses I’m an ogre

I have been an Ogre since
before birth
my mother ill
attacked by antibodies in the womb
luckily the illness does not cross
the barrier of the mixed mother daughter
the placenta
but the antibodies do cross

I am born with my immune system
red hot and ready to fight

my maternal grandmother is an Ogre too
she cares for me while my mother heals
you are right to refuse help she says
you may feed yourself
and she lets me
I am four months

Two grrl cousins are also stressed from birth
one arrives early and survives
smallest child to live in that city
all they have for premies is a warm box
her parents are warned
she might be slow

the other is born in Bangladesh
mother very ill
mother damaged by illness
she survives too

three Ogres?
No
different mitochondria
from three different mothers different immune systems different parents

Ogre, dark angel, and martyr

And the others wonder why we fight

A woman says “I like you when you’re well.”
to me when I am sick
and my partner disappears
he says, “I can’t have a disabled partner.”
I snarl, “I am not disabled.
I am just on oxygen.”
But it is not true
I am disabled
And very annoyed

I avoid the woman for a year
and think about it
I am never “well”
if it’s an antibody disorder
and if I got it in the womb
what would I be like if I did not have it?
no one knows
and I don’t either

So I have done well
in the end
to survive a chronic illness since before birth

Ogres take longer to mature
but once we do
we are hell on wheels

And at last I accept it

I am happy being an Ogre
and I will be the best Ogre I can

And it will be fun
At least, for me

Which?

For a long time I think I am a werewolf, but I am not controlled by the moon. But I can get angry. And then I remember this poem and think “Not a werewolf. An ogre.”

_______________________

Butterfly Girl Comes to Visit

She is so beautiful with her wings
multicolored many splendored lights caught and multiplied
as she flutters

I freeze
I am an ogre
Huge and clumsy
I know from past past many times
Not to touch you
My rough fingers have brushed the tiny feathers from your wings
You cry in pain and your flight becomes erratic
My kiss is just as bad
Rough lips
If I move the wind of my passing blows you against a window
You fall stunned

I hold and crush
the box of feelings that can hurt you
Sorrow, anger, fear, dismay
Even fatigue turns my aura red
And scorches your wings

I hate to cause you pain

Fly butterfly girl
My baby needs me, my pager rings
My ogre husband stirs
The effort of holding still plain on his face
I can’t hold still much longer

Butterfly girl
Fly on home

Navigating disability

I am having an interesting week regarding disability. Maybe it will make me a curmudgeon.

A woman says, “It must be difficult to be disabled, with your lungs.” I wear my oxygen to sing in chorus. I did the concert without the oxygen but had to drop some held notes at the end. I get goofy when I am hypoxic. I also write really strange rhyming songs when hypoxic, which I recorded.

I reply, “Well, my mother and father and sister are all dead, so by comparison I am doing well.”

She looked horrified. “ALL DEAD?”

“Yes.” I said.

Mother at 61, father 75 and sister at 49. Cancer, emphysema, cancer. I am so lucky that I don’t smoke and have always disliked sodas and thought that addictive things were very dangerous for me before I started college.

I also attended a Roam Echo Telemedicine yesterday, about Long Covid. WOW. It was EXCELLENT.

https://hsc.unm.edu/echo/partner-portal/echos-initiatives/long-covid-fatiguing-illness-recovery/

Yesterday’s program was given by an attorney, discussing disability. She was describing how the chart notes can damage a patient’s chances of obtaining disability and she gave us forms to help us document disability successfully.

She put the number of people with Long Haul Covid at 30% of the not hospitalized people.

Thirty percent. That is HUGE and damaging. I have heard numbers from 10-30%.

There were also physicians attending the Roam-Echo program who have Long Covid and are realizing that they can’t work to the level they did before. Some can’t work at all.

The panel recommended neuropsychiatric testing if the patient is having any trouble with memory or executive function or brain fog. Document, document, document.

Not only that, the previously taped programs are linked to the site above. So I can watch the rest of them. It is FREE and I get Continuing Medical Education from it.

I trained in Family Medicine from 1989-93 in medical school and residency 1993-96. When I was in school I got virtually no training on how to do disability paperwork. Or even how to tell if someone is disabled. The truth is that people do not want to be disabled. In our culture it is shameful and anyhow, social security disability is often $1000 per month. Try living on that. Unenviable.

It turns out that I am lucky or smart or some weird combination. I bought disability insurance way back in medical school and paid $1000 per year for 29 years. I used it twice before 2021. I was on bed rest for 3 months of preterm labor. My insurance doesn’t kick in until I have been off work for 3 months. I wrote them a letter and said I expected to return to work six weeks after having my child, unless there were complications. The company paid me for an extra week. I called them and basically they said, we are so happy to have you return to work that we do not care.

The second time was after my third pneumonia. Strep A and my lungs and muscles were trashed. Both burned like strep throat. It hurts. I was out for six months and then worked half of my usual for another six months. Really I was working about 1/4 of a regular Family Practice Physician. I was seeing 4-5 patients a day and then sleeping for 12 hours, exhausted. A “normal” load is 22 or more. Which is not really sustainable with today’s complex patients, but that is another essay. I had chronic fatigue, MECFS, as it’s now called, but I was in denial. I never got past 8-10 patients a day for the next seven years. I was also running my own small business and had continual hostility from the only hospital in the county. I was one of three independent practitioners. I really do not understand why they thought my tiny clinic was a threat, but whatever. They could grow up.

From 2014 to 2021, I asked any patient with upper respiratory symptoms or a cough to wear a mask for the visit and I masked too. I explained that if I got a fourth pneumonia, I would be disabled for Family Practice medicine. I hoped it wouldn’t happen. I masked the people with allergies too, because after all, you can have allergies AND a cold. When Covid-19 hit, my patients just rolled their eyes and wore the masks. I only ever had one man, a new patient, object. “I won’t wear a mask,” he said.

I said, “Sir, you don’t have to. But I won’t see you without a mask, so please leave and go to Urgent Care.” This was in my waiting room.

“You mean that!” he said.

“Yes I do. I get pneumonia, so that is a firm policy.”

He put on the mask.

I closed the clinic in early 2021. Covid-19 hit us too hard and we were a shoestring clinic anyhow, with 8-10 patients a day. I went to work in the next county. I kept walking into patient rooms where people had their masks off. I had pneumonia in five weeks.

So it goes.

My disability insurance is paying. I did have to hire an attorney to get the company to explain the policy rules clearly. I don’t speak legalese, I hate it, and I think that insurance companies will use any loophole they can find to get out of paying. So far I am lucky to have navigated this. Now I have to look over my policy again, because some policies change after two years of paying and they don’t have to pay if you can do ANY paid employment. It’s pretty clear that I can’t. I went for a beach walk yesterday and then crashed for a two hour nap and then slept 8 hours last night. Any labor, walking OR brain, will crash me. ME-CFS sucks. I think we will have a handle on it in another decade and it’s clear that it is an immune system response. Too late for my employment, though. Ah, well. I got 30 years in. I was annoyed because I was NOT planning to retire yet. I keep running in to people who say, “How do you like retirement?” “I didn’t retire. I am disabled by my fourth pneumonia and grumpy about it.” “Oh,” they say. I should do the social thing, “Love it!” but I’ve never been good at that anyhow. I joke that I tell the truth because I am often not believed, so why bother to lie?

At any rate, 10 or 30% of the people who have had unhospitalized Covid-19 is a huge number of people, and we do not know how long Long Covid will last or how to resolve it. Stay tuned. I hope it is less than a decade, but it will be a little while yet.

Prayers and blessings for all.

The photograph is the really beautiful agate I found yesterday. For the Ragtag Daily Prompt: curmudgeon.

sleep and defiance

Oh, gosh, CNN is making everyone panic about sleep again: https://www.cnn.com/2022/11/08/health/sleep-deprivation-wellness/index.html

Don’t buy it. It used to be 8 hours. Now they are saying 7 in this article. SLEEP AT LEAST 7 HOURS OR YOUR BRAIN WILL MELT.

Nope. The media likes us to panic because it sells papers and gets shares. Don’t buy the hoopla.

After all, I took call at night for 30 years and my brain has not melted. (Ok, if you disagree, post your own blog, heh, heh.) Starting third year of medical school. Sometimes it was every third night, sometimes every fourth. We were often up and awake and working for much of the night and then through the next day. If we had to be ready for rounds at 8 am, we had to be there earlier to see the patients, check the lab work, check any studies, drink a gallon of coffee and then be coherent on rounds, where the faculty physician might quiz us about the nineteen causes of high potassium. Uh. Taking too much potassium is one. Kidney failure, diabetic ketoacidosis, etc, etc.

I made up the number nineteen.

Anyhow, I was a sleep rather than eat person. If we got a break, I would go to sleep and skip food. The bad rotations were obvious because my weight would drop. We’d meet for “nutrition rounds” in the morning. I would skip lunch, hoping to have it at home post call, but the list might have things added even as I ran around checking things off. At last I would stop for lunch at 2 or 3 or 4 because my brain was no longer functioning.

Doesn’t sound very healthy, does it?

Here is a post on sleep from 2015: https://drkottaway.com/2015/01/08/sleep/. I sent a copy to our sleep specialist and he liked it.

When I got my flu vaccination and covid booster a month ago, it hit me pretty hard. I am sleeping as I normally do at night, for 6.5-7 hours. But I also started napping, once or twice a day. I was sleeping 11 or 12 hours total daily. I canceled pulmonary rehabilitation exercise, because it wiped me out. I was starting to feel better after three weeks, so I restarted pulmonary rehab. I promptly slept 12 hours a day again and my muscles gave me HELL.

So what in the heck IS this? Well, healing. My body is knocking me out to do repair work. It’s sending a pretty clear message that running on a treadmill is not ok right now. My immune system is busy making antibodies and is saying HEY WE DO NOT HAVE ENERGY TO SPARE FOR ANYTHING ELSE. This is sort of annoying except that having had four rounds of really bad pneumonia, the last one requiring oxygen for a year, still on oxygen to sing and for heavy exertion, I am willing to listen to my body. It is annoying, but: my mother, father and sister are dead, so even though I am struggling some, I’m not dead. It’s all relative, right?

When I had pneumonia #3 (2014) and pneumonia #4 (2021), both times part of the healing is sleeping twelve hours a day. I went back to work six months after the 2014 one and promptly slept twelve hours a night. I was seeing 4-5 patients a day and could barely do that. I went into denial about chronic fatigue, but I knew I had it. NO WAY, I AM TOUGH. Well, I am tough, but that means chronic fatigue and not dead.

I do not worry about sleeping 7 hours a night or 8 hours. I sleep when I get sleepy. Naps are fine and one gets to relearn napping after age 50 or 60 and it’s ok. If you need to stay awake after lunch, have a small lunch and no alcohol. Alcohol is not good for sleep in the long term and neither is marijuana. Benzodiazepines are worse than either. Ambien and those drugs are approved for “short term” use, meaning two weeks. Great. We don’t know what it does if you are on it for years, but some of us note that those drugs are closely related to the benzodiazepines. I think the most addictive drug is tobacco, followed by benzodiazepines and then methamphetamines. That is from asking patients and observation over 30 years. There are individual quirks though, and I have had people say, “Alcohol is no problem but the first time I was given oxycodone I wanted more.” Sometimes there is a bit of denial in those statements.

The photograph is me doing my second sleep study last week. I scored. Um, or rather, it was a positive test. Sleep apnea, darn. I am now waiting for my bipap machine. The funny bit is that I had to drive an hour to the lab. I was supposed to be there at 8. I got there an hour early because I get really tired at night. The tech let me in and wired me up. “But,” she said, “you can’t go to sleep until 9, because I have another patient and they are not here yet.” “Ok,” I said. I read for a while in the chair, put my head back and (don’t tell) fell asleep.

She came back in, did the final connections and then left. There is a ceiling camera and a disembodied voice. We tested the connections. “Flex and extend your right foot.” “Now breath through your nose.” I did and immediately fell asleep. She woke me, “Breath through your mouth now.” “Was I asleep?” “Yes.” The wires didn’t bother me much, though I had to surface part way during the night to change position.

I’ve slept sitting up in hospital meetings. I fell asleep standing against the wall in medical school. It is really a blessing to be able to fall asleep.

The year my father died, I had a terrible time falling asleep. His will was very out of date, written 40+ years before. It was a mess. His house had 13 years worth of unopened mail. I used Jon Kabat Zinn’s Mindfulness Meditation tape to fall asleep. But I used it in a rather weird way. He has a section where he says “Do NOT fall asleep.” It was a body scan. I would think, hey, you can’t tell ME what to do, and I would always fall asleep during it. So there, Dr. Kabat Zinn. Thank you.

The pandemic is enormously stressful, not to mention all of the other things. You can still relax though. What relaxes YOU? Stupid animal videos? A walk around a yard or park? Dancing in your kitchen? Knitting? Reading your absolutely most boring textbook? Put the phone and the television and the computer away at least one hour before you want to sleep and preferably two hours.

And here, to relax you, are pictures of sleep: https://drkottaway.com/2018/04/30/zzzzzz/

Blessings.

Who snew?

Who snew the snow was falling deep
with votes to vote before we sleep
we’ll march for miles with votes to keep
breach of promise makes us weep

I go pogo Hellno no no
who snew the snow won’t make school no go
cold students trudge to bus oh so slow
school on a snow day sorrow blow woe

who snew the temperature would snow melt?
icy drips and drops from trees pelt
my cat on leash slips grumpy fur felt
my vote is cast against gilt hair hell bent

Who snew that science snews would soon die?
fentenyl kills like a drive by
kills more than heroin or meth, oh my my
science silenced while liars cry die

Who hopes for sanity not war?
who casts a vote to help the poor?
who snows the prophets words once more
are used to profit from human gore