Shame and anger in overuse illnesses

“amongst those who treat addicts of any kind generally agree that anger and shame help no one and is actively counter-productive.”*

Wait.

I have to think about that statement.

I do not agree at all.

Ok, for the physician/ARNP/PAC, anger at the patient and shaming the patient are not good practice, don’t work, and could make them worse. BUT anger and shame come up.

In many patients.

Sometimes it goes like this with opioid overuse: the person shows up, gets on buprenorphine, and is clean.

It may be a long time since they have been “clean”.

One young man wants to know WHY I am treating him as an opioid overuse patient. “Why are you treating me like an addict?”

I try to be patient. I recommended that he go inpatient, because I don’t think we will cut through the denial outpatient. Very high risk of relapse. “You have been buying oxycodone on the street for more than ten years.”

“I’ve been buying it for back pain, not to party.”

“Did you ever see a doctor about the back pain?”

“Well, no.”

“Buying it illegally is one of the criteria of opiate overuse.”

“But I’m not an addict! I’ve never tried heroin! I have never used needles!”

“We can go through the criteria again.”

He shakes his head.

He is in denial. He is fine. He doesn’t need inpatient. He is super confident, gets work again, is super proud.

And then angry. “My family still won’t talk to me!”

“Um, yes.”

“I’m clean. I’m going to the stupid AA/NA groups! Though I don’t need to. I’m fine!”

“What have you noticed at the groups?”

“What a bunch of liars!” he says, angry. “There are people court ordered there and they are still using! I can tell. They are lying through their teeth!”

“Obvious, huh?”

“Yeah!”

“Did you ever lie while you were taking the oxycodone?”

Now he ducks his head and looks down. “Well, maybe. A little.”

“Do you think your family and friends could tell?”

He glances up at me and away. “Maybe.”

“Your family may be angry and may have trouble trusting you for a while.”

“But I’ve been clean for four months!”

“How many years did you tell untruths?”

“Well.”

Shame and anger. Anger from the family and old friends, who have heard the story before, who are not inclined to trust, who are hurt and sad. The first hurdle is getting clean, but that is only the first one. Repairing relationships takes time and some people may refuse and they have that right! Sometimes patients are shocked that now that they are clean, a relationship can’t be repaired. Or that it may take years to repair. My overuse folks are not exactly used to being patient. And sometimes as they realize how upset the family and friends are, they are very ashamed. And some are very sad, at years lost, and friendships, and loved ones. I have had at least one person disappear, to relapse, after describing introducing someone else to heroin. He died about two years later, in his forties.

Shame and anger definitely come up in overuse illness.

The above is not a single patient, but cobbled together from more than one.

______________________

*from an essay titled “F—ing yes, I’m a fatphobe” on everything2.com. Today there are two with that title. The quotation is from the second essay.

Nanowrimo

I have finished my first try at Nanowrimo.

I do NOT have a coherent novel at the end. I have pieces and sections and chapters and questions. I have to look up a bunch of microbiology and also how the goblets cells in the stomach work, because I don’t remember and anyhow, I am sure it has changed since I was in medical school.

BUT I DO have 50,000 words.

I got stuck twice at the beginning and had two days where I didn’t write anything except this blog. And then another two. I kept dreaming about an ogre who wanted to be in the novel. Well, ok. I finally decided that the goal was to write the 50, 000 words, not stick to an outline. I added the ogre and have not missed a day since. To finish 50,000 words in 30 days, it breaks down to 1667 per day. If you miss four days it is more. I had two days where I wrote over 5100 words. That helped a lot.

Now I think I will rest for a day or two and then start looking it over. Write a list of questions, work on some needed research, think about it. That ogre is interesting. Unexpected.

I think it was fun! At least, some of it was. I got stuck writing about something based on when I was ill, so that was difficult. It brought up the fear and the deep loneliness of that time. I learned to skip to something else when I get overwhelmed.

Anyhow, HOORAY!

Sterling too

I grow up with sterling.

My mother has a set of sterling. It is important to her. It is an emblem, a badge. She does not have as extensive a set as her mother.

My sister and I know the silver is special because of our mother. We like the tiny spoons best. They are silver with gold on the bowl.

“Can we use the special spoons?” we ask. For ice cream.

“Yes,” says my mother, smiling.

We run to get them, the small spoons, heavy for their size. Silver is heavier than stainless steel. The spoon also gets colder than stainless steel and tastes different. We eat our ice cream with our special spoons very happily.

We know that the silver is sterling. I don’t know what that means for a while. It means it is not plate. Plate? But these are spoons.

My mother shows us the stamp on the back of each spoon. “See? It says sterling. That means it is silver all the way through. Plate has silver over another metal.” She shows us the back of another spoon. The bowl has a worn spot. “The silver has worn away. And it does not say sterling.” We both study the two spoons and weigh them in our hands. The plate one is lighter. My mother is scornful of silver plate.

My mother is an artist and goes to museums. She comes back from one laughing. “They have an exhibit about homes and decoration. There is a room with tv trays and very few books and wall to wall carpet and a large color television. I thought it was so dull and ugly. Then I went to the next room. Oriental carpet and books and a guitar and no television and art!” She laughs. “They have me nailed. I am such a snob and it looked just like our house!”

We do have a tv but it is the smallest black and white that you can get. And my father knocked it over one night. Now the picture is cup shaped. The top of heads are wide and swollen. Neither of my parents care enough to get it fixed or replace it. They spend their money on art supplies and books and music. Friends visit. “What is wrong with your tv?” I look at it in surprise. I am so used to the deformed picture, I stopped noticing long ago.

Once we are at my mother’s mother’s house. My mother tells another story. “I found mother sweeping to get ready for guests. She swept the dirt under the edge of the rug! I said, “MOTHER! What are you DOING!” Mother just looked at me and said, “It’s a poor mistress who doesn’t know the maid’s tricks.” My mother’s mother did grow up with servants. But not here. She was born in Turkey because her father was a minister, running an orphanage and school. My grandmother lived there until she was sixteen and the family was exiled from Turkey at the start of World War I.

I give my mother’s sterling to my niece, after my sister dies. My children are not very interested in sterling. That is ok with me. Things change and values change.

I still have some special spoons, and think of my mother and father and sister when I eat ice cream.

___________________

For the Ragtag Daily Prompt: sterling.

All of my patients are smart 2

I did a porch call a bit over a year ago. It’s like a house call except on a porch.

A friend/patient asks me to see a long time friend of his. The friend has multiple chemical sensitivities. We meet, the three of us, on his porch.

My friend has had me as a physician but he has not seen me at work with someone else.

I ask a lot of questions and then launch into an explanation of the immune system and how antibodies work.

My friend states, “He can’t understand that.’

I smile at his friend. “Oh yes he can. And you followed what I said, didn’t you?”

His friend grins back and said, “Yes, I did. Most of it. Or enough.”

All of my patients are smart. One day in clinic I think how blessed I am, that ALL of my patients are smart and fascinating people. Then I think, how could that be? And, how lucky am I?

And then I think: everyone is smart.

They are not all educated in the same way I am. They may not be well read. They may not have my science background or my geeky fiction and poetry and song brain. But they ALL are smart.

Some are brilliant at mechanical things. I have a patient who is an expert in restoring church organs and is working 3000 miles away in New York City. “They are driving me crazy.” he says. “You have to have the approval signed off on over 20 groups, historic preservation, the fire fighters, etc, etc, to remove one board from the church. The organ was covered over by bad repairs over the years. We’re trying to get it back. After this I will put in new organs, but this is my last restoration.”

Veterans, teachers, attorneys, physicians, retired computer engineers, car mechanics, marine engineers, parents, grandparents. They are all smart, men and women.

We finish the porch visit with some options and the friend of my friend says he will think about what I said and try some things.

A few days later my friend calls. “I couldn’t believe he was following your science talk, but he was. He got it. He remembers it and understood it.”

“Of course he did,” I say.

“I am actually impressed,” says my friend. “It was really interesting watching you do that.”

That may be one of my weird skills. To be able to listen to the person thoroughly and then respond in language that they understand and a bit more. An assumption, always, that they can follow a complex and intricate idea.

I do not know if they always follow what I say. But they always respond to the assumption that they are smart and that they can understand and that they are an equal. I am explaining from my expertise, but I know they can understand when I explain it correctly.

And I have not seen this in the physicians that I have seen. Out of 22 physicians since 2012, four were excellent and met me and explained as an equal.

The rest did not. They dismiss me. They talk down or avoid me once they realize that they do not understand why I keep getting pneumonia. They are afraid to say “I don’t know.” Four are not afraid and recognize that it’s something weird and say, “We do not understand this and we don’t know how to fix it.”

Four out of 22 have my respect. And that is a sad number. Medical training needs to change and physicians need time to listen and need to learn how to listen.

Meanwhile, all of my patients are smart. And I am so blessed.

Reblog: Desertification

I don’t want to argue about global warming. Let’s talk about deserts instead. Overgrazing, cutting down all the trees and losing topsoil: we have seen this in the United States, with the dust bowl. We have a lot of people in the world to feed, even after all the deaths from Covid-19. We need to take care of land.

Ok, I am lame, that is embedded, not a reblog. I will have to figure out the difference. Feel free to laugh at me. My problem with technology is that it is NOT intuitive. I was horrible with computers until I realized that they are linear and stupid. That is, they only follow the exact right command and they have very little capacity to guess what I mean. I decided that computers were glorified hammers and very very annoying and that the manuals are usually written by people who speak computer, not English. That made it much easier for me to work with computers.

Anyhow, plant a tree. Blessings and peace you.

Exercise mets

Mets could be metastases, a terrible word in cancer. But this is exercise mets. I am half way through my pulmonary rehabilitation for pneumonia and getting stronger. So what is a met? “One MET is approximately 3.5 milliliters of oxygen consumed per kilogram (kg) of body weight per minute.” (from https://www.healthline.com/health/what-are-mets#definition).

Ok, that doesn’t seem very useful. I find this way more useful, a chart of how many mets are used for certain activities:

https://www.healthline.com/health/what-are-mets#examples

The treadmill I am using at pulmonary rehab tells me how many mets I am using. However, last time I turned it on and didn’t enter my weight. It uses 155 pounds, which is more than I weigh. I think that then the mets are wrong. It isn’t exact anyhow. The important thing is that I am improving and off oxygen! I am now up to 5.3 mets, going at 3.3 mph, on a 4% grade, for 40 minutes. Pulmonary rehab is twelve weeks, twice a week, with a respiratory therapist and a physical therapist.

My respiratory therapist asks my goals. To bicycle distance, hike across the Olympics, and to ski again, off oxygen. That means altitude. Once we are above 5500 feet, the body really starts noticing the thinner air. I am not there yet but I am so pleased to be improving.

On the chart, I am in the moderate exercise range. To bicycle, I would have to be able to sustain 8 mets. Not yet, not yet.

Being off oxygen (except night, flute, sustained singing and heavy exercise) is GREAT! The intrinsic problem has not been fixed, thought. Fully twenty specialists since 2012 have not figured out why I get pneumonia easily and how to protect me, other than masking and not working in Family Medicine or anything people intensive. It’s annoying, my career has been blown up. I don’t have much hope of an overarching diagnosis at this point, but I’m willing to keep trying. We don’t know everything in medicine and really, I do not think we ever will. It’s endlessly complex and fascinating.

I think the mets chart should be shared with patients. I had one couple who insisted that the woman had PMS even though she was postmenopausal. I scratch my head and continue to watch her. After months something made me suspicious and I order an echocardiogram. She had congestive heart failure, seriously reduced heart output. I promptly called the cardiologist and said, “This is new, she is on NO MEDICINES.” He saw her within a week. Sometimes things do not present in a straight forward manner. She felt much better once we got her heart functioning better. If a person is losing their ability to perform moderate intensity mets, they should see their doctor. It could be spending too many hours in front of a screen (turn it off, get up, go outside, walk daily!) but it could also be something else. Heart is the number one killer still.

Stay healthy and keep those mets up!

Ha. I did use the word certain, didn’t I? And one of my favorite exercises is dancing. Listening to this right now:

part time

I only dress like this part time.

#outfitsinappropriateforwork

A friend took this with my camera at my request. Thank you, friend!

For the Ragtag Daily Prompt part time.

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.

Lung swelling and long covid

I wrote this in 2017, about influenza. However, I think covid-19 can do the same thing. Part of long covid is letting the lungs really heal, which means infuriating amounts of rest and learning to watch your own pulse. Watching the pulse is easier then messing around with a pulse oximeter. The very basics of pulse is that normal beats per minute is 60 to 100. If your pulse is 70 in bed and 120 after you do the dishes, you need to go back to bed or the couch and REST.

From 2017: Influenza is different from a cold virus and different from bacterial pneumonia, because it can cause lung tissue swelling.

Think of the lungs as having a certain amount of air space. Now, think of the walls between the air spaces getting swollen and inflamed: the air space can be cut in half. What is the result?

When the air space is cut down, in half or more, the heart has to work harder. The person may be ok when they are sitting at rest, but when they get up to walk, they cannot take a deeper breath. Their heart rate will rise to make up the difference, to try to get enough oxygen from the decreased lung space to give to the active muscles.

For example, I saw a person last week who had been sick for 5 days. No fever. Her heart rate at rest was 111. Normal is 60 to 100. Her oxygen level was fine at rest. Her oxygen level would start dropping as soon as she stood up. She had also dropped 9 pounds since I had seen her last and she couldn’t afford that. I sent her to the emergency room and she was admitted, with influenza A.

I have seen more people since and taken two off work. Why? Their heart rate, the number of beats in one minute, was under 100 and their oxygen level was fine. But when I had them walk up and down a short hall three times, their heart rates jumped: to 110, 120. Tachycardia. I put them off from work, to return in a week. If they rest, the lung swelling will have a chance to go down. If they return to work and activity, it’s like running a marathon all day, heart rate of 120. The lungs won’t heal and they are liable to get a bacterial infection or another viral infection and be hospitalized or die.

I had influenza in the early 2000s. My resting heart rate went from the 60s to 100. When I returned to clinic after a week, I felt like I was dying. I put the pulse ox on my finger. My heart rate standing was 130! I had seen my physician in the hospital that morning and he’d gotten a prescription pad and wrote: GO TO BED! He said I was too sick to work and he was right. I went home. It took two months for the swelling to go down and I worried for a while that it never would. I dropped 10 pounds the first week I was sick and it stayed down for six months.

Since the problem in influenza is tissue swelling, albuterol doesn’t work. Albuterol relaxes bronchospasm, lung muscle tightness. Cough medicine doesn’t work very well either: there is not fluid to cough up. The lungs are like road rash, bruised, swollen, air spaces smaller. Steroids and prednisone don’t work. Antiviral flu medicine helps if you get it within the first 72 hours!

You can check your pulse at home. Count the number of beats in one minute. That is your heart rate. Then get up and walk until you are a little short of breath (or a lot) or your heart is going fast. Then count the rate again. If your heart rate is jumping 20-30 beats faster per minute or if it’s over 100, you need to rest until it is better. Hopefully it will only be a week, and not two months like me!


Feel free to take this to your doctor. I was not taught this: I learned it on the job.

I took the photograph, a stealthie, in June 2021, when I was still on oxygen continuously.