Tag Archives: death is part of life

by

Damaged or blessed?

Am I damaged or blessed to have PANS?

Damaged because it has put me out six times? Four times with pneumonia, once with preterm labor, and once with mononucleosis. Plus getting really sick with strep A as a kid, an earache that had me crying with pain at age 8, coughs in medical school that would hang on for six weeks and not respond to albuterol. Only rest would help. A year this time and not better yet, 6 months out last time and then seven years working half time. In 2012 out two months. 2005 out two months. Preterm labor out 6 months. Mononucleosis: dropped ten pounds and did not feel better or gain it back for two months. How much income have I lost? A lot. Am I damaged?

Blessed because I am not dead? My sister dies of cancer at 49, my mother at 61, my mother’s father at 79. All three married people who had “anger issues”. And all three got cancer.

I think that they had anger that they could not reach.

I do not think that ALL cancer is buried, unexamined, unresolved anger. But I am starting to see a medical pathway that could lead from buried anger or other buried emotions to illness and death. The buried emotions are stressful. The body tries to hold the stress. The body works very hard at it. The conscious mind is not aware. This is the realm of the unconscious. The stress, the unresolved trauma, anger, grief, whatever, triggers antibodies. Heightened sympathetic nervous system, higher adrenaline and higher cortisol. Cortisol is the steroid system. Steroids help to lower inflammation but they also impair the immune system. The immune system is chronically suppressed, trashed, and then it can’t do its job. Anti lysoganglioside antibodies form and block the lysogangliosides. The lysogangliosides are supposed to clean house in the brain. They can’t clean house, they are paralyzed. And the brain forms plaques: dementia. Or some other antibody forms that blocks cancer removing cells in the immune system: and there it is. Cancer.

We all have cancer all the time, that our immune system is removing. That’s a little weird to think about, isn’t it? So we need healthy immune systems, we need the parasympathetic nervous system, we need to relax, we need to play, we need to laugh ourselves silly at stupid cat videos, we need to make ridiculous memes go viral on TikTok, we need to use the power of the internet to drive the cost of a share up just to fuck with the rich Bosses, because we are tired of them fucking us over.

So, says my sig other, or he who used to be. You need to avoid stress, in order to not get sick again.

Well. I stopped eating on Saturday a week ago and ate minimal calories and mostly high protein and fat. Because I was pretty sure he was breaking up with me. He felt the same about me. I was terrified when we walked two days ago, so I wore the dragon shirt. Most of all I wanted not to yell.

Neither of us yelled. We both listened. He doesn’t know why he has shut me out of three areas of his life, and the three most important ones. It isn’t me. He is aware that it is him. He was not really aware that he was doing it. I am trained to hide emotions, from childhood in my crazy family and then physicians are trained as well. I cry with patients sometimes, when we find that their cancer is back, or other things like that. The child dying. But I can hold a calm expression even when a person tells me that they are hearing voices telling them to kill themselves and would I please take out the antenna in their tooth. So I sat hard on my emotions for ten months. Until I thought the right time had come.

Even then, I did my best and screwed up. We’d opened up one thing and I thought the rest would be ok. I sent an email. Whoa, boy, it was NOT ok, and I got yelled at. I burst into tears. I didn’t feel like yelling at all, I was crushed. But it is ok, it had to come out. The Year of the Ox is almost over. I hope the Year of the Tiger is less horrible. But at the same time, I would not trade the time with him for anything.

Damaged or blessed? Cursed or blessed?

Both, I think. All of us.

I am submitting this to today’s Ragtag Daily Prompt, though it is not a hawk.

by

Covid-19: long haul II

A few days ago my primary care doctor texts that she wonders if I have the autoimmune form of fibromyalgia.

Red alert. I have not heard about this.

I did a search last night and find this: https://www.sciencedaily.com/releases/2021/07/210701120703.htm.

Now, if you have been paying attention, you know that I was diagnosed with PANDAS in 2012, though Isuspect that it is really PANS. Both are autoimmune disorders. I also think that long haul covid is the same thing or something similar.

Meanwhile, they are now saying Covid-19 Long Haul may ALSO be an autoimmune disorder. Multiple sites below.

There is a paper in Nature that I don’t have access to, annoyingly enough. The fibromyalgia story in the above story is that they have spun antibodies down from human serum of affected and unaffected people and then injected them into mice. The mice get fibromyalgia symptoms from the affected antibodies but not from the unaffected ones. The symptoms in the mice go away when the antibodies fade out, in a few weeks. Aha.

The long haul story says that death from Covid-19 may be an autoimmune response, the antibodies going really nuts and making people bleed or their lungs close down. That is, swell shut. They have been drawing blood to study at different stages of Covid-19 and also checking autopsy patients. Usually autoimmune diseases are more prevalent in women then men but Covid-19 seems to be worse in men. This: “The mechanisms behind the production of such autoantibodies aren’t yet clear. Widespread and long-term inflammation during severe COVID-19 may cause the immune system to produce antibodies to pieces of the virus it wouldn’t normally recognize. Some of those pieces might resemble human proteins enough to trigger the production of autoantibodies.

Excessive inflammation could also boost production of autoantibodies that had previously only existed in the body at very low levels. Vaccination against COVID-19 is much less inflammatory than infection with the virus. In a separate study that looked at COVID vaccination, none of the healthy volunteers developed autoantibodies.” (2)(*)

Here is another fibromyalgia paper: https://www.verywellhealth.com/autoimmunity-neuroinflammation-in-fibromyalgia-5197944. That paper lists the autoantibodies that they are finding in fibromyalgia including gangliosides. The fourth antibody in PANDAS/PANS is anti-lysoganglioside. Aha! So this is sparking a serious revolution in medicine: it is looking like many of the mysterious and difficult to describe and quantify diseases may be autoantibody disorders. The anti-ganglioside antibodies were found in 71% of fibromyalgia patients. There are seven antibodies listed, including one to serotonin. In PANS, they are blaming two anti-dopamine antibodies. None of the fibromyalgia patients had ALL seven, but all of them had some of them. A different pattern in every patient, because we all make different antibodies. Fascinating.

One more: https://pubmed.ncbi.nlm.nih.gov/28339361/. People with lupus are more likely to have fibromyalgia and visa versa. “Increasing evidence indicates that N-methyl-D-aspartate receptors (NMDARs) play a major role in the induction and maintenance of central sensitisation with chronic pain. In this study, we evaluated the role of anti-NMDAR antibodies in the development of FM in patients with SLE.” Lupus and fibromyalgia share an autoantibody. Holy cats. NMDA is ALSO a neurotransmitter. Makes me wonder quite a bit about “psychiatric” disorders.

Remember that we make up all the words. So the autoimmune diseases are usually found by testing for a few antibodies. In the most common autoimmune disorder, hypothyroidism, we usually check the TSH and T4 level, so patient hormone levels rather than antibody levels. Over the last 30 years, we are able to test for more antibodies. Systemic lupus erythematosis, celiac, rheumatoid arthritis, juvenile rheumatoid arthritis. When I was in medical school in 1989, the rheumatology book was an inch and a half thick and there were loads of different patterns of disease. I am sure it is twice as thick now. Our initial test for autoimmune disease is for inflammation: an antinuclear antibody and an erythrocyte sedimentation rate. Some people have rheumatoid arthritis but their RF is negative: they have “sero-negative” rheumatiod arthritis, which is more likely “a different autoantibody that we have not tracked down” rheumatoid arthritis. In chronic fatigue and fibromyalgia, the antinuclear antibody and erythrocyte sedimentation rate are usually normal. I suspect both disorders of being “post” inflammation.

My prediction is a serious medical revolution, where we start regularly testing for autoantibodies. Whether that will be something like a pregnancy test but with hundreds of autoantibodies tested for, or whether there are some key indicator ones that we can find, is not clear. At any rate, trauma, stress and infection all increase the likelihood of getting one of these disorders and we have to figure out how to lower the load of all three.

Do you think people are instinctively quitting their jobs?

I had a phone visit with my pulmonologist yesterday. She was running about 35 minutes late, I sat on Zoom until she showed up. She looks exhausted. “We have less doctors and more patients.” she says. “I was on call for the critical care unit last week and I am on call Monday and Tuesday.” “Please take care of yourself,” I say, “We really need you.” She is smiling the whole time. She is worried about me dropping weight and I am worried about her.

Prayers and blessings all around.


1. https://www.cedars-sinai.org/newsroom/covid-19-can-trigger-self-attacking-antibodies/
2. https://www.nih.gov/news-events/nih-research-matters/autoimmune-response-found-many-covid-19
1. https://www.cedars-sinai.org/newsroom/covid-19-can-trigger-self-attacking-antibodies/
2. https://www.nih.gov/news-events/nih-research-matters/autoimmune-response-found-many-covid-19
3. https://thehill.com/policy/healthcare/591528-long-covid-study-author-explains-four-factors-that-can-predict-how-you-get
4. https://www.the-scientist.com/news-opinion/studies-identify-risk-factors-for-long-covid-69648
5. https://www.dailymail.co.uk/health/article-10436473/Is-people-sicker-Covid-19.html
*If that paragraph does not make people get the vaccine, they are living completely in a mad dream world, IMHO.
6. https://www.nih.gov/news-events/nih-research-matters/misdirected-antibodies-linked-severe-covid-19

For the Ragtag Daily Prompt: flickering. As in flickering hope.

by

tears falling

I am back in grief
in the ocean of tears
someone has to go there
and I can swim

I can swim on the surface
and I can swim in the depths
no trench is too deep
for me to explore

they think it is dark
in the deepest trench
it’s true that the pressure
is very strong

but all of us
in the deepest depths
learn to glow
and shine

that is what the trench does
at first you are terrified
an ocean of grief
an ocean of tears

but then you see light
beings glowing
some are eating each other
but others smile and wave

if you are not too frightened
if you do not fight and struggle
if you take a breath, calmly
you find you can breathe

and you look at your hands
in wonder as you breathe
in the ocean of grief
in the ocean of tears

you too are glowing softly
in the ocean of grief
in the ocean of tears
you feel welcome

by

Hurricane Ridge

This is my mother’s biggest watercolor painting. I have it hanging in my guest room. It is huge and gorgeous, nearly the width of the double bed.

I miss her. Helen Burling Ottaway. I will put more of her artwork up. She died in 2000, but I still have the art.

by

saved

when your parents die
you will find what they saved

you will find things in the house
that you do not know why they saved

you may find linens carefully folded
and papers from the past

the linens embroidered by ancestors
but you cannot ask which ones

photographs of people you don’t know
and which are not labeled

a reference to a ring that your great aunt had
but she has been dead since 1986

when you go to your parents’ house
ask them what they have saved

ask them why it has been saved

ask them now
because when they are gone
it is too late

to ask about what they saved

________________________

There are also families estranged, where they have cut ties or emigrated or escaped abuse, and have reason not to save anything or speak about it.

We want freedom but we want love too. For the Ragtag Daily Prompt: freedom.

by

Four seasons

These are etchings by my mother, Helen Burling Ottaway, who died in 2000.

All four are done with the same etching plate.

Winter is done first. The zinc plate is covered with a protective layer and then she draws with tools, including dental tools. The plate is placed in an acid bath. The acid etches where the drawings are, different depths. The protective layer is removed. The plate is inked. Most of the ink is gently wiped off and the plate is placed on the press. Wet paper is laid on the plate and the heavy wool covers are folded down over that. The press is run. The wool is folded back on the other side and the paper is lifted and laid to dry.

The plate is re inked for each one.

She puts the protective cover back on the plate and adds the buds for spring. These are etched. Winter is now gone, the plate has changed. She prints all of the spring series.

Next is summer. Leaves are added. She prints those.

Last is autumn. Now there are leaves on the ground as well. She does some the plates with more than one ink color. This was one of her largest etchings. She did a small series first, where the etchings were about 4 by 6 inches. This was 18 by 24. She had a really big etching press. I don’t know who has it, my sister took it to California and it disappeared.

I have the etchings and I have all the plates. I can’t run this series, I could only run autumn. I grew up surrounded by my mother doing art, etchings, watercolors, oils, lithography, a constant sketchbook and crafts. I took a painting class a few years ago. The instructor says, “Acrylics are NOT watercolors.” I reply, “I know how to DO watercolors.” I was being quite creative with the acrylics only I automatically used the watercolor techniques that I grew up with.

The photograph doesn’t really do them justice. I will have to take some more. Plus I have her slides in some of the boxes left from when my father died. More cataloging.

Blessings and good memories of my mother.

by

Boa waiting

Boa Black would often wait in the yard, watching. What was she waiting for?

These:

Boa really liked the fawns. She would wait and watch the path into my second lot.

I have a 1930 house and a 1930 garage. The garage is on the lot line and one side extends five feet into a second lot, that is set at 90 degrees to the house lot. I quit mowing the second lot when I was divorced, working, and had two kids. I talked to the neighbors on the block and no one objected. The lot is hidden from the road by a huge bank of rosa rugosa.

The deer have used the lot in some years to stash young fawns while they made their rounds.

This is taken with a 26X zoom, so the fawn saw me but did not get spooked. Actually the fawn was hopping around in the second lot and managed to look guilty when I first saw it. Uh-oh, mom told me to stay hidden. It lay down and tried to pretend it had been behaving the entire time.

Boa Cat died in early 2020, after 17 years with me, a kitten from the pound. In memorium.

by

Covid-19: aftermath

I am thinking about the roaring twenties a lot. I think people went a little nuts, not because of the war, but because they had difficulty being emotionally honest about the influenza pandemic. I think we humans will do it again to forget the deaths, to go into denial, to refuse to grieve.

Yes, that is my prediction.

Be very quiet, I am hunting wabbits.

Be careful in our future roaring twenties. Money will flow like honey and people will go nuts. Hold fast, hunker down, don’t go out without your macintosh, wear clean underwear. Remember what your mother told you, remember what your father tells you. Because that was followed by the Depression and that is one risk.

I don’t know if it will start this spring or next spring. Ok, I AM hoping that my son and future daughter-in-law can get married in early May, since they’ve put it off for two years. But. The 1918-19 influenza was really three years, not two. It tailed off. Half the people in the world got it. In Samoa, half the adults died, or was it 70%? They had little exposure to infection but a ship brought it. They KNEW they were high risk, but a sailor didn’t know he was sick yet.

Why a roaring twenties? Because we want to forget this pandemic, as the last one was forgotten. Our history books say that the Roaring Twenties was about the end of World War I. We teach lots about that. We barely mention the influenza world pandemic. I am reading a book about the 1918-19 influenza pandemic published in 2018. The author says that it is only now, 100 years later, that we are starting to really tell the stories of that pandemic. She gathers stories from all over the world, including stores of different infection control strategies in two cities. One guessed right and one guessed wrong, and in the wrong one, way more people died.

I read about that 1918-19 pandemic after influenza nearly killed me in 2003. I was 42, healthy, a physician, a mother, an athlete. I had NO risk factors except stress. Now it looks like it was a PANS reaction, but at the time, neither my doctor nor I could figure out why I was short of breath and tachycardic walking across a room for two months. Fatigue, chest pain, tachycardia, shortness of breath. Hmmm, what does that sound like? My partners thought I was faking and I was so sick that I could barely communicate. The stresses were my mother dying of ovarian cancer in May 2000 and my marriage being pretty on the rocks and me working way too hard. My psychiatrist said I should take time off. I said, I can’t. He said, you’d better. Then I got flu. “See?” he said. The body decides, not the conscious brain. He was correct, damn him.

The book I read in 2004 looked dry and medical from the outside. It had pages and pages of footnotes. It had photographs of Los Angeles. They knew the influenza was coming towards them like a wave and they tried to get ready. Bodies under sheets were stacked five deep in the hallways of the hospitals. It hit that fast. People, usually age 20-50, turned blue and fell over dead. WHY? It was the immune response. The 20-50 year olds had a better immune response than the 50 and older and their lungs would swell until there was no airspace left. Even then, that pandemic death rate was only 1-2 % in the US. But it was so fast and spread so quickly that everything was disrupted because it was the workers that were deathly ill and at home and there was no one to work.

People wore masks in public, except for the mask refusers, but not in their homes. So entire families would get ill. I don’t think they had figured out viral loads yet. If you are the last one standing, and you are trying to take care of a spouse and six children, you were high risk from viral load and exhaustion.

The Roaring Twenties WAS a way to grieve, it’s just a dysfunctional one. The stages of grief: denial, bargaining, anger, grief and acceptance. My sister said that acting out and revenge ought to be added as stages of grief. She died of breast cancer after fighting it for 8 years. Roaring is denial and bargaining and acting out and revenge, all at once. Everyone grieves differently, remember that. There is not an order to the stages of grief and you don’t do them once. You do them over and over and over.

I am a Cheerful Charlie, right?

War is one way to forget/deny/act out. Let’s not do that. Let’s not have a civil war of forgetfulness and denial.

Let us remember clearly and lean on each other.

Playing for change: lean on me

I think this fits the Ragtag Daily Prompt: inflammable.

My sister’s blog: https://e2grundoon.blogspot.com/2009/01/chemo-not-in-vain.html . She died on March 29, 2012. The start of the blog is here: https://e2grundoon.blogspot.com/2002/02/ .

Blessings.

______________

I got Cheerful Charlie from Pogo comics: read the Albert Alligator section. https://comicstrips.fandom.com/wiki/List_of_Pogo_characters
More recently, Downton Abby used Cheerful Charlie. https://downtonabbey.fandom.com/wiki/The_Cheerful_Charlies

by

Covid-19: Good and Bad News

I am writing this on Christmas morning.

The good news is this: National Guard Empties Bedpans and Clips Toenails at Nursing Homes. “In Minnesota, an ambitious initiative is training hundreds of Guard members to become certified nursing assistants and relieve burned-out nursing home workers.” (1) Well, hooray, the National Guard is called out to help, because the nursing homes are out of staff and we aren’t supposed to abuse our elderly. I think this is AMAZING. And the National Guard may learn some things about work and the elderly too. Hoorah and Hooray!

The bad news is a snippet from New York State: Omicron is milder, BUT the exception may be children. (2) Child cases of Covid-19 are going up really fast and hospital admissions of children. ICU work is hard hard hard, but child and infant ICU is even harder. Blessings on the nurses who do this and the physicians too. When I did my pediatrics rotation way back in Richmond, VA, in a tertiary care hospital, I had children who were dying: one with a brain tumor, one with liver cancer, one with Wilm’s disease. Hard work. I chose Family Practice. I have still had pediatric patients die, including an 18 month old where I had taken care of mother through the pregnancy, but not terribly many. Even less in the last ten years since my average patient was about age 70. All of my kids in the last ten years were complicated: one with Down’s, another a leukemia survivor, others. Children can be very medically complicated. I had two adults who had survived infant heart surgery as well. They were set up with UW’s Adults who had Childhood Heart Surgery Clinic, though that is not the correct name. I am pretty happy to have that sort of back up only two hours away. They both had pretty awesome heart murmurs and that midline chest zipper scar. Ouch.

So, why post this on Christmas? If the cases are rising in children, maybe that will inspire some folks to get vaccinated or at least not yell at family who refuse to bring small children to an unvaccinated Christmas gathering. Judging by the posts on the doctor mom facebook group, there is quite a bit of family yelling going on. Stand down, folks, and respect other peoples’ boundaries.

The problem is, if enough children are sick, we run out of beds. And staff. “As of Thursday, there were 1,987 confirmed or suspected pediatric covid-19 patients hospitalized nationally, a 31 percent jump in 10 days, according to a Washington Post analysis.” (3)

Blessings.

1. https://www.nytimes.com/2021/12/22/health/covid-national-guard-nursing-homes.html?action=click&campaign_id=154&emc=edit_cb_20211223&instance_id=48593&module=RelatedLinks&nl=coronavirus-briefing&pgtype=Article®i_id=165651500&segment_id=77808&te=1&user_id=c97a1a8547f511fe3bd45b0806ed713c

2. https://www.nytimes.com/2021/11/23/us/covid-cases-children.html

3. https://www.washingtonpost.com/health/2021/12/24/omicron-children-hospitalizations-us/