Blessed

You needn’t worry that I will importune you.
Words explode and swirl upon the page.
It’s more likely that I’ll say blankly “Who?”
Since I enlarge upon a fascinating stage.
Approaching two years since I was taken sick,
on oxygen I wrote a poem of farewell.
Career ending injury: nature can be such a dick.
Breathing is important. Absent it is hell.
I am still healing. I hope that I can ski.
I am lucky that my fatigue is relatively mild.
My oxygen can go 9000 feet up where I’ll see
muscle dysfunction truly makes me wild.
Friends and family gather close and gather far
I feel blessed beneath a lucky star.

________________

Sonnet #2 for the Ragtag Daily Prompt: sonnet.

happy

Ok, this is a weird little poem to my sister Chris, who died a decade ago. My father died thirteen months later. My mother was already dead. Mother and sister of cancer and father of emphysema, damn the Camels. There was no family slaughter, unless it was by cancer. There was a family meltdown on my mother’s side. Sometimes you have to let people go.

Sister sister mister miss her
look, Chris, I’m happy

Cancer cancer crabby dancer
look, Chris, I’m singing

Daughter daughter family slaughter
look, Chris, I’m healing

Healer healer wheeler dealer
look, Chris, no drama

Wombing wombing quiet blooming
look, Chris, I’m growing

The photograph is of a family cabin in Ontario. It is called “The New Cabin”, “Helen’s Cabin” (after my mother) or “Chris’s Cabin” after my sister. As you can see, it is suffering through neglect worsened by Covid-19. I put those screens up a decade ago, but they are not surviving the winters and the porch roof has a hole. It was a lovely porch to sleep on. I was last there in 2018, and up on that roof trying to tar holes as a temporary fix. We did not dare go on the porch roof, too late for that. Things change and fall away and sometimes we have to let them go. Especially if they are beyond repair. The photograph is taken earlier this year by the people who care for the cabins when we are not there.

welcome home

home home welcome home
home is where you are, Beloved
and you are everywhere

not in churches, not for me
I run outdoors, long to be free
you are everywhere I see

the beauty in the world
love and grief and pearls
small child dance and twirl

I have crossed the boundary
over and over again
Beloved, let me stay, friend

I’ve searched for you so long
Beloved, you make us so strong
look everywhere that’s wrong

home home welcome home
home is where you are, Beloved
and you are everywhere

________________________________

August 31, 2022

Care bare? No, Care Barrier.

My cardiologist told me to go to the Mayo Clinic six months ago.

I saw him last week and he wanted an update.

I said, “I filled out a request for a visit and my primary care referred me, but Mayo Clinic never called.”

He replies: “I will refer you.”

A week later I get a call from Mayo Clinic. But I do not have an appointment yet because

  1. They are booked out until November 18th. I am advised to “call daily” to get my appointment. They open up a week at a time, but don’t say when. A new meaning to “maybe you’ll get lucky”.
  2. They do not take my insurance and want a $5000 deposit prior to seeing me. I can fill out paperwork to ask for patient assistance. This would be the fifth hospital system in which I have filled out that paperwork. I have had to do it for four other places. The paperwork is different for each one and some even want a copy of my taxes. Do you think it’s secure? Of course it isn’t.
  3. I have to go in person to Minnesota, so add a round trip plane ticket to that $5000. They may do tests while I am there, so I don’t know how much of the $5000 I would get back. If any.

At the moment this seems insurmountable, but I will keep chipping away at all the insane barriers and paperwork. What a stupid medical system the US has, right?

We still need single payer and medicare for all. There would be one set of patient assistance papers, not five.

Autoimmune OCD and my daughter shops my closet

https://www.nature.com/articles/s41398-021-01700-4

The article is a proposal for diagnostic criteria for autoimmune obsessive compulsive disorder, a relatively rare version of OCD. Important because the treatment has to include searching for infection that triggers the antibody response, which in turn attacks the brain. Antibiotics to treat a “psychiatric” disorder. Mind and body connection, right?

The ironic thing about this new proposed diagnosis is that I do not have obivious OCD in any way, shape or form. It is masked by packrat. Also, my OCD is focused. When I was working, it was focused on patients. My clinic charts were thorough, 100% of the time. I was brutally thorough and wouldn’t skip anything. The result was that I got a reputation for being an amazing diagnostician. Usually it was because I wanted ALL the puzzle pieces and the ones that don’t fit are the ones that interested me. They have to all fit. Either the patient is lying or the diagnosis is not as simple as it appears. Occam’s Razor be damned, people can have more than one illness.

In fact, an article 20 years ago looked at average patient panels and said that the average primary care patient has 4-5 chronic illnesses. Hypertension, diabetes, emphysema, tobacco overuse disorder, alcohol overuse disorder, well, yeah. And then the complex ones had 9 or more complex illnesses. You can’t see the person for one thing, because if the diabetic has a toe infection, you’d better look at their kidney function because the antibiotic dose can kill their kidneys if you don’t adjust it. So do not tell me to see the patient for one thing. Malpractice on the hoof. Completely crazy and evil that administrators tell doctors to do that.

No one looking at my house would ever think I have any OCD. I am not a hoarder (ok, books) but the packrat force is strong in me. My daughter did not inherit that gene. She is a minimalist. However, she has come to appreciate the packrat a little.

This summer she said that her purse is wearing out. As a minimalist she has one purse. I ask, “Would you like to see if I have one that you like?” It so happens that as I was trying to recover from pneumonia, a local garage sale had 20+ year old designer purses for $3 each, because the house was going on the market. Got to get rid of the stuff.

“Yes, please.” says my daughter.

I start with the weird ones that I know she will not want. I get eye rolls. But I am progressing towards the purses that are close to the one she has. At last I produce a small leather purse, the right size, in good shape, and she sits up. “Let me see that one.” Like Eeyore with his popped balloon, putting it in a jar and taking it out, she tries putting her phone and wallet in the purse and taking it out. “Yes, I like this!” She calls it “Shopping mom’s closet.” I think it is delightfully comic. The benefits of a packrat mother.

Back to the Nature article and OCD. The diagnostic criteria are gaining steam. Having watched a conference this summer about Pandas and Pans, mine is mild. Some young people have a version where killer T cells invade the brain and kill neurons. I had a moment of panic when the conference was discussing a case, but then I thought, if I had the neuron killing kind I would be dead or demented by now.

Instead, I’m just a little neurologically unusual.

Top ten causes of death, US, 2020, and doctor time pressure

https://www.cdc.gov/nchs/fastats/leading-causes-of-death.htm

There is an article about US doctors, that primary care would have to work around the clock to apply all of the guidelines, here: https://news.uchicago.edu/story/primary-care-doctors-would-need-more-24-hours-day-provide-recommended-care.

Yes, but this is not new news. There was a trio of articles twenty years ago that said the same thing. And the guidelines have only expanded. Primary care is doing the same thing it has always done: what it can. Meanwhile we go to “Continuing Medical Education” and the other specialists ALL say we are not doing enough, we need to do more. Makes a woman cynical, don’t it?

Family Practice is a specialty, did you know that? We do a three year residency. Internal medicine is also three years, but many then “sub specialize” — further training in cardiology or rheumatology or nephrology, and etc. Sometimes we get a primary care doctor who doesn’t do the extra years but gets interested in something and they learn to subspecialize. We had a pulmonologist on the peninsula here, best I’ve worked with, who had not done the fellowship but learned it on the job. She was excellent and is now retired.

So you as a patient need to be aware of the top ten causes of death and do some thinking. Heart is still number one, in spite of Covid-19. All the cancer deaths are number two, but that’s only a fraction of the cancers. You want cancer screening, to pick it up before it is lethal. Pap smears, colon cancer screening, get your skin checked. Covid-19 is number three in 2020. Let’s look at the list.

US top ten causes of death, 2020.

  • Heart disease: 696,962
  • Cancer: 602,350
  • COVID-19: 350,831
  • Accidents (unintentional injuries): 200,955
  • Stroke (cerebrovascular diseases): 160,264
  • Chronic lower respiratory diseases: 152,657
  • Alzheimer’s disease: 134,242
  • Diabetes: 102,188
  • Influenza and pneumonia: 53,544
  • Nephritis, nephrotic syndrome, and nephrosis: 52,547

The list changes. What has fallen out of the top ten, since Covid-19 was not on the list back in 2019? “Intentional self-harm” aka suicide, was number ten in 2019.

Let’s go through the list one at a time and give you some basic tools and ideas about prevention, since your physician doesn’t have enough time to deal with all of it.

  1. Heart: The people who have not seen a doctor for twenty years, um, go see a doctor. If you have high blood pressure for twenty years, you will also have heart failure, which means pump failure. This is bad and will kill you. Check in at least every three to five years. In the US currently, you are a “new” patient after three years, so it’s best to show up just before that three year mark. Call ahead, everyone is short staffed. Check blood pressure, cholesterol and quit smoking (that includes pot, also bad for the heart), cocaine is very effective at trashing the heart, alcohol is bad for it, so is methamphetamines, and any other silly and stupid substance “overuse”. Kratom? Bad. Fake pot? Also bad. Turn off the tube or computer and go for a daily walk. Outside. Without headphones or earbuds. Try to figure out the bird noises, ok? Eat more vegetables. Don’t be stupid.
  2. Cancer: do the screening tests. Get the HPV vaccine for your children. Get pap smears. Use sun screen. Get your colonoscopy when you hit that age. Want to read about a screening test? Go to this site: https://uspreventiveservicestaskforce.org/uspstf/home . This is the clearing house for the current guidelines AND THEY CHANGE. They get updated. The vaccines are all here too. Get them.
  3. Covid-19. If you aren’t vaccinated then I don’t even want to talk to you, unless you are seriously immunosuppressed and your docs told you not to. Otherwise your brain has been taken over by non-scientist crazy whackos. IMHO.
  4. Accidents have been rising up the list and currently number one is opioid overuse deaths. Do not buy pills on the street because even if they claim to be oxycodone they may actually be fentanyl. The drug cartels aren’t so good at diluting the fentanyl enough to not kill you. If you are on prescribed opioids you should have a shot to reverse it (narcan shot or nasal spray) and your family or friends should know where it is and how to use it. Next is guns and cars. Guns should be locked up with the ammunition locked up separately when you are not working as a policemen or hunting a deer or rhinoceros. Cars should not be driven under the influence and hello seat belts. Oh, let’s see, wear your helmet on the bicycle, roller blades, e-bike, jet-skateboard or whatever. Wear a life jacket in the boat. Don’t point Axe towards your face and try to light the spray on fire.
  5. Stroke. This is all the same stuff as heart. And also Covid-19 increases your risk of stroke.
  6. Chronic lower respiratory disease: this is mostly caused by tobacco, tobacco, tobacco, marijuana, tobacco, asbestos, tobacco and woodsmoke or firefighting. Smoke is bad. Vapor is smoke, ok? See your doctor to get help quitting smoking. My father quit after 55 years of 2 packs a day of unfiltered Camels, so don’t tell me you can’t. Also it takes an average of 8 tries or so to quit. Yes you can.
  7. Alzheimer’s: keep your brain active, eyes are important, ears are important, eat those vegetables and if you live where I do, vitamin D in the winter.
  8. Diabetes: sweet drinks are bad. Fake sweet drinks are bad. A coke has 32 grams of carbohydrate. A Starbuck’s mocha 12 oz has 60. Quit drinking sweet drinks. Your goal is no more than 15 grams of sweetener a day. Now, what exactly is a carbohydrate? It’s anything edible that is not fat or protein. However, there are lots of very low carbohydrate vegetables out there. A cup of kale only has 8 grams of carbohydrate. Sweet peas and sugar beets have a lot more. Diabetics and everyone else should have at least half of every meal be vegetables, green and yellow and orange. Fruit is sweeter and all of the portion sizes (except kale) are less than you’d like to eat. Prevention is good.
  9. Influenza and pneumonia. Get your flu shot. There are two pneumonia shots and the first is given at age 65 and the second at 66. Except in people with heart or lung problems, then they get the vaccine early and repeat at 65 and 66. I think we are going to have a group of people who always mask on planes. I am one of them.
  10. Nephritis and etc. This is kidneys. What can affect your kidneys? Pills and illegal drugs, mostly. All pills that are absorbed are metabolized (which means broken down) by either the liver or the kidneys. Kidney function goes down slowly over a lifetime with age. We are seeing a huge rise in kidney problems because of too many pills. Yes, supplements too. Natural does not mean safe and what the heck is natural about a pill anyhow? Take as few pills as possible. Take ALL the pills to show your doctor. Ok, your doctor might be clueless about supplements. We had one person nearly hit the liver transplant stage until she showed my partner her supplement’s new label “Can affect the liver.” Holy cow. Should say “Can kill you.” So back to prevention: my baseline was that people should have blood lab basic testing every five years before age 50 and every three years after that if they were on NO PILLS. If they are on ANY pills, I recommend yearly testing. Did you know that the supplement companies can change what is in the pill at any time without telling you? Isn’t that reassuring? Heck no.
  11. There are still a long list of other causes of death. Liver disease, intentional self-harm, and on.

Since your doctor does not have time to think about all of this every time you stop by, it’s partly up to you. I don’t trust Dr. Google at all, but the sites I go to are the CDC, the Mayo Clinic, NIH, AAFP (American Academy of Family Practice). I look at lots of quack sites too, to see what is being sold, but I am not advertising them!

Be careful out there.

The photograph is Elwha watching the four point buck and wondering if it will eat him or not. From last week.

float

I took this with the zoom all the way out. We’d argued about whether it was a log. I said it was not a log. I was correct.

This creature is definitely bouyant but is not floating in the picture. He or she is lying on a high sandbar or piece of rock. There wasn’t room with the others, or perhaps he or she eschews the crowd.

For the Ragtag Daily Prompt: bouyant.

Adverse Childhood Experiences 14: Hope

I keep reading bits about despair and about how a generation of children is being “ruined” by the pandemic.

Not so, I say. There is hope. We need to support each other to survive and then to thrive.

This generation WILL have a higher than average ACE score. If the Adverse Childhood Experience scale is from zero to eight, children in this time period will have at least one higher point than average and many will have three or four or more. Loss of a parent, a sibling, beloved grandparents during covid. Increases in domestic violence, child abuse and addiction. These are all part of the ACE score.

What does this do to children? They have survival brain wiring. They will do their best to survive what is happening. A friend and I both have high ACE scores, 5 or more, and we are both oppositional defiant. We showed this in different ways. He grew up in the same community. He escaped from home and knew all the neighbors. He walked to the local church and attended at age 3 or 4. He has lived in this community all his life.

His oppositional defiance showed up at home, where he consistently refused to obey. And in school, where he confounded and disobeyed teachers and passed anyhow.

My family moved every 1-5 years. I hated moving. I wouldn’t talk to kids in a new school for a year. It was very difficult. So my oppositional defiance was very very internal. I hid in books and in my head. In 6th grade I got in trouble for hiding novels inside the school book I’d already read. I also would just not listen and my respect for the teacher got even lower when she would be angry that I knew the answer to the question once she’d repeated it. I wasn’t listening because I was bored. She was the first teacher that I thought, well, she is not very bright. The next year they stuck me in the honors class and I stopped being bored, though I still questioned practically every opinion every teacher had. I wanted evidence and I did not believe it just because the teacher said it.

I am not saying that oppositional defiance is in every high ACE score. I don’t know that. Why oppositional defiance? Imagine you are a small child and you are beaten. There isn’t rhyme or reason. You can’t predict when the adult will be out of control. Why would you behave “well” if it makes no difference? You might as well do what you want, because nothing you do will change the adult. Or imagine you are a small child who is with one person, passed to another, then to another. You may not exactly trust adults after two or three repetitions. And you want to survive.

There is an increase in addictions, behavioral health diagnoses, and chronic illness in adults with a high ACE score. A researcher when I first heard a lecture about it said, “We think perhaps that addiction is a form of self medication.” I thought, oh, my gosh, how are we ever going to treat THIS? Well, we have to figure that out now, and we’ve had 30 years to work on it.

I was very comfortable with the oppositional defiant patients in clinic. I got very good at not arguing with them and not taking their behavior personally. They might show up all spiky and hostile and I might be a little spiky and gruff back: sometimes that was enough. I think the high ACE score people often recognize each other at some level, though not always a conscious one. With some people I might bring up ACE scores and ask about their childhood. Sometimes they wanted to discuss it. Sometimes they didn’t. Either was ok.

One thing we should NOT do is insist that everyone be “nice”. We had a temporary doctor who told us her story. Her family escaped Southeast Asia in a boat. They had run out of water and were going to die when they were found by pirates. The pirates gave them water. They made it to land and were in a refugee camp for eight years or so. She eventually made it to the US. She was deemed too “undiplomatic” for our rural hospital. I wondered if people would have said that if they knew her history and what she had been through. It’s not exactly a Leave it to Beaver childhood, is it? When she was telling us about nearly dying of thirst in the boat, my daughter left her chair and climbed on my lap. She was under ten and understood that this was a true and very frightening story.

We can support this generation of children. This has been and is still being Adverse Experiences for adults as well. Family deaths, job loss, failure of jobs to support people, inflation. Remember the 1920s, after World War I and the last pandemic, of influenza. “On October 28, 1919, Congress passed the National Prohibition Act, also known as the Volstead Act, which provided enabling legislation to implement the 18th Amendment.” (wikipedia). There were forces trying to legislate behavior, as there are now. The result in 1920s of making alcohol illegal was speakeasies, illegal alcohol, and violence. Some people acted wild after WWI and the influenza pandemic and some people tried to lock down control, by controlling other peoples’ behavior. It did not work then and it will not work now. The wildness is out of control grief, I think, grief dysfunctional and drinking and shooting and doing anything and everything, legal or not. We remember how the 1920s ended too. Let us not repeat that. Let us mourn and grieve and support each other and support each other’s decisions and autonomy.

Blessings.