hunger

It is hard to write about hunger

I am always hungry
I am always afraid
I always long for love

How can I always be hungry?
The hunger is partly for food
and partly for love

They are tied together
“You have food insecurity,”
A friend says

I want to argue and do
but I also know that he is right
I am always worried about food

My daughter has it too
she admits that even as she finishes a meal
she wants to know that there is food for the next meal

A friend tell me about running out of food
hiking in Alaska. He is ok with it.
My daughter and I agree we will never camp with him.

My mother says that pregnant
she is hungry the entire time
fantasizes about a banana split and chocolate syrup

After the baby is born
“I did not want the banana split!”
she says and laughs

Maybe it is the baby who is hungry
inside the womb, the fetus that is hungry
“The doctor yells if I gain any weight.” laughs my mother.

Hunger and love intertwined.
I don’t see my mother for nine months after birth
because she is ill.

I curl around my daughter ferociously
I want to protect her from any harm
I eat when I am hungry and feed her food and love

____________________

The photograph is me and my mother. She is getting over tuberculosis and is still very thin. I think that my grandparents took the photograph. I took the photograph of the photograph.

For the Ragtag Daily Prompt: hunger.

Covid-19: Long Haul III

The CDC has guidelines for Long Covid and it can qualify for disability in the United States.

Here: https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html

And here: “As of July 2021, “long COVID,” also known as post-COVID conditions, can be considered a disability under the Americans with Disabilities Act (ADA). Learn more: Guidance on “Long COVID” as a Disability Under the ADA, Section

Here is the list of “most common” symptoms from the CDC:

General symptoms

  • Tiredness or fatigue that interferes with daily life
  • Symptoms that get worse after physical or mental effort (also known as “post-exertional malaise”)
  • Fever

Respiratory and heart symptoms

  • Difficulty breathing or shortness of breath
  • Cough
  • Chest pain
  • Fast-beating or pounding heart (also known as heart palpitations)

Neurological symptoms

  • Difficulty thinking or concentrating (sometimes referred to as “brain fog”)
  • Headache
  • Sleep problems
  • Dizziness when you stand up (lightheadedness)
  • Pins-and-needles feelings
  • Change in smell or taste
  • Depression or anxiety

Digestive symptoms

  • Diarrhea
  • Stomach pain

Other symptoms

  • Joint or muscle pain
  • Rash
  • Changes in menstrual cycles

There are recommendations for a work up by physicians. Depending on symptoms, this may include labs, ECG, echocardiogram (heart ultrasound), CT scan and other tests.

A friend has just gone through those four tests . They are “normal” except for her heart rate. At rest her heart rate is 70 with a normal oxygen level. Walking, her heart rate jumps to 135. Over 100 is abnormal in this athlete who is NOT exerting heavily.

So WHAT is going on with NORMAL testing? I think this is “Covid-19 Viral Pneumonia”, a complication of Covid-19, just as “Influenza Viral Pneumonia” is a complication of influenza. Ralph Netter MD has an illustration of lungs from a person who died of influenza viral pneumonia: the lungs are swollen and inflamed and bruised. WHY is the testing “normal” then? The swelling is throughout the lungs, so a chest x-ray sees it as all the same density and a CT scan also sees it as all the same density. The lungs may have mildly decreased breath sounds, but the sounds are even throughout the lungs. The useful TEST is a walk test. I have tested patients with “walking pneumonia” in clinic for years: get a resting heart rate and oxygen level. Then have my patient walk up and down the hall three times and sit back down. Watch the heart rate and oxygen level. If the heart rate jumps 30 beats up or is over 100, the person needs to continue rest until the heart rate stays under 100 or jumps less than 30 beats. It is important to observe the heart rate until they recover. Sometimes the oxygen saturation will drop as the heart rate comes down, and some people qualify for oxygen. Steroids do not seem to work for this. The length of time to healing is not totally surprising, because a lobar pneumonia that is visible on chest xray takes 6-8 weeks to fully clear. It is not too amazing that a bad walking pneumonia could also take 6 weeks or more to clear. If the person returns to work too soon, they prolong the lung inflammation and they are at risk for exhaustion and for a secondary pneumonia. The treatment is REST REST REST and support.

Do they need oxygen? Currently oxygen is covered only if the person’s oxygen saturation drops down to 88%. However, I think that oxygen would help recovery and make them less exhausted. With my first walking pneumonia, which was influenza, my walking heart rate was 135 and my resting heart rate was 100. Both were abnormal for me. Neither I nor my physician could figure it out. This was in 2003. I did look in my Netter book: I took one look at the painting of the influenza lungs and shut the book. “Oh.” I thought. “That’s why I can’t breathe.” The image is here, though I wish it were bigger.

It took two months for my heart rate to come down, the lung swelling to improve, and me to return to work. I read the text of Dr. Netter’s image a year later and then I read an entire book about the 1918-1919 influenza. Since then I have walked people who come in complaining of exhaustion after a “cold” or “bad cough”. Viruses can cause this and so can bacteria: mycoplasma pneumonia, chlamydia pneumonia, pneumococcal pneumonia, legionella and strep A. If the fever is gone, the infection has probably resolved, but it still can take days or weeks for the lung tissue to recover.

For Covid-19, I would add a third test: walking with weights. We test cardiac patients by asking if they can carry two bags of groceries up a flight of stairs. That is 3 Mets, a measure of the heart load. We need to measure the lung load as well. If the lung tissue is swollen, the amount of airspace is cut down and can be half normal. The heart attempts to take up the slack. The person may tolerate a heart rate of 135 for a while, but it is like running a marathon. If they are older or have heart disease, this can trigger a heart attack. I would walk the person carrying hand weights, and see the recovery.

Also, brain fog is unsurprising. If your oxygen level is borderline, it is darn hard to think. I write really strange songs when I am hypoxic. I get goofy and feel weird. The fast heart rate also feels like anxiety: I think that the body is trying to tell me to rest.

The definition of Long Covid is symptoms after 30 days. Please see your physician if you are still ill and continue to have symptoms.

Blessings.

Here is a recent article about T-cells and inflammation in the lungs of Covid-19 patients: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8460308/

and this: https://www.frontiersin.org/articles/10.3389/fimmu.2020.589380/full

Covid-19 and walking pneumonia

I wrote this essay in July 2017. Before Covid-19. It is clear that Covid-19 is also causing a walking pneumonia. People are exhausted when they get out of bed. No fever, they may not cough much, but if they get up, they can feel exhausted. The key to this is the heart rate, the pulse. If the pulse jumps 30 points faster or more, this implies lung swelling and reduced lung capacity. Right now, the only treatment we have is rest and time to heal. I should know, I’ve had really bad walking pneumonia four times: the first two times I was out for two months. The third time 6 months with 6 more months half days and chronic fatigue. The fourth time put me on oxygen.

I want to offer hope to the people with Long Covid-19. Having been through four bad pneumonias, with increasingly long recovery times, and now disabled for doing Family Medicine, I have experience to share. I will write more about that in the next essay.

From 2017: Walking pneumonia is changing.

The classic bugs are four “atypical bacteria”:

mycoplasma pneumonia
chlamydia pneumonia (this is not the STD chlamydia. Different one.)
legionella
pertussis (whooping cough)

However, streptococcus pneumonia can also be a walking pneumonia OR a lobar pneumonia. In a lobar pneumonia the person usually is short of breath, running a fever of 102-104, and they point to where it is: hurts in the right upper chest. On chest x-ray there will be consolidation: whited out from fluid or swelling instead of nice ribs and dark air. They are often tachycardic and hypoxic.

In walking pneumonia the person often has no or minimal fever, they just feel tired or short of breath when they do things, and the chest xray can be “clear”. It isn’t really “normal”, it’s just that the bacteria or virus affects the entire lungs and causes some swelling throughout and doesn’t white it out.

“Double” pneumonia is when the chest film is whiting out on both sides. We also see the lungs whiting out with ARDS — acute respiratory distress syndrome. So after trauma in a car wreck and lots of broken ribs, the lungs can be bruised too and white out. Ow. Influenza virus can cause lung swelling and in the 1917-1918 flu infected military recruits lungs were swelling shut. They would turn blue and die.

“My” strep that I’ve had pneumonia with twice is streptococcus A, not strep pneumonia. It causes strep throat mostly though it can invade and cause sepsis or pneumonia or cellulitis. There are currently 4000+ known strains of strep A, and some are resistant to antibiotics or can cause kidney damage or do all sorts of nasty things. I think that “my” strep is resistant to azithromycin.

The current guidelines say to treat walking pneumonia with azithromycin. However, a paper came out this year saying that resistance to azithromycin is rising among streptococcus pneumonia and that nearly 50% of strains tested were resistant. Uh-oh. That means that azithomycin doesn’t work and the person can get sicker and may die. I talked to a pulmonologist in Seattle when I needed help with someone. He said that he would have said there weren’t any resistant strep pneumo strains here in Washington except that he had one intubated and in the ICU right then. “I’m convinced now, ” he said.

A lobar pneumonia is easier to diagnose. Abnormal chest x-ray, reasonably healthy people run a high white blood cell count (so my frail folks, immunosupressed folks and 90 year olds don’t raise their white blood cell count), and a fever (ditto) and look sick. The walking pneumonia people come in saying they have been coughing for 3 weeks or 4 weeks or two months. I am doing more lab testing because of the resistance.

This winter I have seen 6 different causes of walking pneumonia here: influenza A, respiratory syncytial virus (In more than one person over 60. That is NOT who the books say it should affect. It’s supposed to mostly cause bronchiolitis in babies and preemies), pertussis, strep pneumococcus, strep A and none of the above. All looking pretty much the same, but with different treatment.

https://wwwnc.cdc.gov/eid/article/15/8/08-1187_article
https://www.cdc.gov/pneumonia/atypical/mycoplasma/index.html
http://www.medscape.com/viewarticle/820736
https://www.cdc.gov/drugresistance/threat-report-2013/pdf/ar-threats-2013-508.pdf#page=79
RSV: http://kidshealth.org/en/parents/rsv.html
Mycoplasma resistance to azithromycin has been reported too: http://erj.ersjournals.com/content/36/4/969

kooky klothes

I took this May 31, 2022. I was still pretty sick with pneumonia and needed oxygen to do practically anything. I had dropped ten pounds the first week of being sick, March 20th. In 2014 it was six months before I could return to work and then only part time and exhausted. So I knew I was likely to be in for a six month haul. I hadn’t figured on needing oxygen, but it made me feel so much better and be able to think again!

Anyhow, I was entertaining myself by going through my closet and putting on things that I did not wear to work. I like the sun lighting up my legs in this photograph. The dress is shorter than it looks and the jacket has tags in Japanese and is a soft woven silk. I thrift shop by feel, because silk and mohair and cashmere and wool and cotton feel so wonderful.

Later the same day, I took this photograph:

I would wear out very quickly during the day. Today it is pouring here and last summer by now it was much much warmer! The sun made my lungs hurt less.

For the Ragtag Daily Prompt: kooky.

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.

speaking up

A friend says he does whatever he wants. He refuses to answer questions about how he makes his money. He doesn’t care if this annoys people. I suspect he may enjoy it.

I have one of those public jobs. Well, had. I have now been disabled from Family Medicine for a year. My lungs are much better than a year ago but they are not normal. And I have now seen 17 specialists and 3 primary care doctors since 2012. The consensus is “We don’t know.” Though many specialists are not willing to say that. What they say instead is, MY testing is NORMAL, go to someone else. My lungs are not normal, but I am on my fourth pulmonologist. I saw a cardiologist this year and the first thing he says is, “It’s your lungs, not your heart.” Well, yeah, I know that.

I miss my patients, but there is something freeing about not working. Ok, more money would be nice, but I am doing ok. Meanwhile, I am thinking about what to do now. I can write full time. Write, make music, travel (on a budget) and sing. And speak up.

Doctors have interesting portrayals on television. We went from Dr. Kildare to Dr. House, working our way through the shows with an emergency room and medical residents. ER drove me nuts. No one EVER dictated a chart so at the end of each show I hyperventilated at the hours of paperwork/computer/dictating they had left. House interests me because it’s always the thing that the patient is hiding or lying about that is the key. “Go search his apartment.” says House. I have figured out cases by getting permission to call family or a group home. More than once.

But a physician is a public figure. I had been here for less than a year when a woman comes up to me in the grocery store and says “What are my lab results?” I look at her blankly. I can’t remember if I really did the snappy comeback that comes to mind: “Take off your clothes and I will see if I remember.” I respond politely and she says, “Oh. I should call the office, right?” “Yes, I try to leave the work there,” I say. If a particularly difficult person was bearing down on me, I would whisper “cry” to my kids. That worked. They would act out on cue and I would be the harassed mother. The person would back off.

I am in a small town. We have three grocery stores. I see patients everywhere, now that it has been 22 years. If I remember every detail, that means they are or were really sick. And we have the layers of relationships: someone might have kids the same age or work with boats or be in chorus with me. Once I take my daughter to a party. The mom introduces me to two other mothers. “She’s my doctor,” says the introducing mom. “Well, me too.” says the second. “And me,” says the third. We all laugh.

Once I am visiting my brother outlaw’s bicycle shop. He has a customer. The customer starts talking to me too. Brother outlaw says, “Do you two know each other?” The customer eyes me. I have my neutral doc face on. “She’s seen me NAKED!” says the customer and I howl with laughter. What a great reply. And my brother outlaw gets it.

Docs have to pay attention to HIPAA. When three women say that I am their doctor, I reply, “Yeah and I left my brain at work, so I can’t remember a thing.” Those three were healthy, so I really do not remember labs or the results of a pap smear. Once I was in cut off shorts and waved at an older woman who was at the ophthalmologist’s. She sniffs and looks away. I get the giggles: I think she did not recognize me. My town is only 10,000 people, so after 22 years I have taken care of many of them. Though sometimes people thank me for taking care of their mother, and after it sounds unfamiliar I ask if they mean Dr. Parkman? Oh. Yes. People get me mixed up with two other small Caucasian woman doctors.

I started the “outfits inappropriate for work” category last year when I was still very sick and short of breath and on oxygen. I did not go out much, partly to avoid covid. My pneumonia was something other than covid and it was my fourth pneumonia and I should not need oxygen. Now I’ve had mild covid and the oxygen is only part time. I sang at my son’s wedding, off oxygen, so I can sing off oxygen for a short time. I danced off oxygen too and did get QUITE short of breath. Since I am no longer a public figure, I can speak out and speak up more. I am thinking about that, particularly with the recent Supreme Court news. I do not agree with what they seem to be planning.

stranded mermaid, cilia and tubulin

I took this photograph last summer at North Beach. I thought she looks like a stranded mermaid, thrown up on shore. I couldn’t move her, she was twice my length. The rock attachment had come too, up from our sea beds.

Happy solstice. Today marks the one year day from when I realized that I was having my fourth round of pneumonia, with hypoxia, agitation, fast twitch muscle dysfuntion and felt sick as could be. I am way better but not well. That is, I still need oxygen to play flute, to sing, to do heavy exercise and to carry anything heavy. Which is WAY better then having to wear oxygen all the time. Today I find a connection between the lungs and the brain, in quanta magazine. This video talks about a new found connection between cilia and the brain. We were taught that cilia and flagella are for locomotion, powered by tubulin. However, this shows that cilia behave like neurons and there is a connection. Since my peculiar illness seems to involve cilia dysfunction in my muscles and lungs, so that I get pneumonia, and the brain, because I am wired when it hits, this is a fascinating connection. If neurons developed from cilia, the dual illness makes a lot more sense. Hooray for quantum mechanics! We use it in medicine every single day.

Happy solstice! Here comes the sun!

Update on whatever it is I have

I had the heart echocardiogram bubble study. Normal. I really really did not like having the mix of blood, saline and AIR injected and I COULD FEEL IT. My logical brain knew it was going into a vein, but my emotional brain kept yelling “Air embolisms kill people!” Yes, but that is arterial. My emotional brain did not care. Anyhow, it was fine.

Saw the cardiologist who said he can understand why I feel PTSD going into my local hospital. He says I should not need oxygen at age 60 with no smoking. He says “Not your heart.” Yeah, duuuude, I know. He suggests I go to the Mayo Clinic. I agree.

Meanwhile, my primary sent a referral to rheumatology to have me seen at Swedish to confirm chronic fatigue. This is to keep the stupid disability off my back. Swedish rheum doesn’t call me. I ask my primary’s office. Swedish STILL doesn’t call me. I call them, as follows.

“Hi, I was referred to Swedish rheum and I have not been called.”

“Name, serial number, date of birth, length of little toe. Ah, we just received the referral yesterday.”

“Um, I don’t think so. I was referred over a month ago.”

“Uh, oh,” scrabble noises, “Oh, uh, we got a referral in December. We were not taking new patients in December.”

“When did you start taking new patients?”

“Oh, um.”

“When did you start taking new patients?”

“Oh, uh, January. But we only took the ones that called us, because after they call, we then review the notes.”

“So you ignored the referral until I call? How am I supposed to know that?”

“Oh, uh, we will expedite your referral. Maybe even today.”

So THEN I get a message from my primary that they have REFUSED the referral. Great.

Meanwhile I read the cardiologist’s note, which pisses me off. “We will refer you to Mayo Clinic since you have unexplained hypoxia and you think you have PANS.”

I send my primary a very pissed off note saying, could we please phrase this as “a psychiatrist suggested PANS in 2012 and while no one likes this diagnosis, no one else has suggested an overarching diagnosis since that time in spite of her seeing four pulmonologists, neurology, cardiology, infectious disease, four psychiatrists, allergy/asthma, and immunology”. Saying “the patient thinks she has PANS” automatically labels me as crazy and obsessed.

So, it seems I should write a book, about how the medical communities treat patients, including a fellow physician, horribly. Of those doctors, three have treated me with respect and were grown up enough to say, “We don’t know.” The neurologist, the infectious disease doc and the present pulmonologist. All the rest are dismissive and disrespectful. Oh, and the one psychiatrist, but the next one says, “I don’t believe in PANDAS.” I stare at him in disbelief, thinking “they are animals related to raccoons that live in China, you moron”. I did not even know it was controversial until that moment. Holy PANDAS, Batman.

My primary has suggested I write to the Mayo Clinic myself, and I am going to. Because the present people aren’t listening, except my pulmonologist and she is short staffed and looks like death warmed over post call every time I see her.

So it’s all annoying as hell. The cardiologist seemed pretty nice, but damn, he put the same damn rumor down about me self diagnosing. Most of the doctors apparently think I might be a tolerable person if they could just drug me with psych drugs. And from what I have seen, there are many patients who are in this situation.

For the Ragtag Daily Prompt: WAR.

https://pubmed.ncbi.nlm.nih.gov/30724577/

Adverse Childhood Experiences 13: unsense

As a child in an alcoholic/addict household where you can not trust adults, who do you trust?

You either trust yourself or you buy in the alcohol story.

If you buy in, you have a high probability of either becoming an addict or marrying one, depending if you prefer the enabler or the enablee role.

If you trust yourself, you develop certain senses. You pay attention to people’s emotions. You pay attention to what people FEEL, what people DO and not what people SAY. You do not care what they say: what matters is what they do. My sister said she used to walk my parent’s house during high school and try to feel the mood. Did she need to hide?

The enabler role is trying to control the other person. There are amazing variations on this. I cared for a person whose sister would not take care of herself. Every time the sister is hospitalized, the person goes and cleans tons of garbage and rotted food from the apartment.

“Stop doing that,” I say, “You are enabling her. Call Adult Protective Services to go look at it instead.”

It can be very difficult to stop and can take years. People can change.

I have noticed that the enabler role is lethal. The enablers seem to die before the enablee. Certainly in my immediate family and with many patients too.

Enablee is the person controlled. Alcohol, drugs, gambling, anger, emotions. It is very very interesting to watch. I have read parts of my mother’s diaries. She was the enabler, with my father as the enablee. However, the diaries document them fighting in the middle of the night when he is drunk. And I remember high school, putting the pillow over my ears, because they were screaming at each other.

But wait. Why would she argue with her drunk husband? Why would anyone argue with a drunk person? You have to wait until they are sober.

And slowly I realize that my mother too was an alcoholic. I remember her drinking. Best cover for an alcoholic is a worse alcoholic, right? It’s fairly horrid. But it explains some stories and my food insecurity. They would not get up in the morning to feed me. My mother told stories of me trying to feed myself: cheerios and laundry soap. If my father was hung over, ok, but, why wouldn’t my mother get up? I think they were both hung over. That or else she really did not want a child. Especially a nine month old with opinions while she was trying to get over tuberculosis. She never got to hold me after birth until 9 months. And then I did not want her. I wanted her mother.

Trusting yourself, life can be a bit complicated. You sense the emotions others are hiding. Being a physician allows me to ask about the hidden things, very gently. Sometimes they come out right away. Sometimes it takes months. Sometimes years and sometimes never. My sister and I discussed going to parties and thinking, oh, that person is the child of an addict/alcoholic. This person is in pain. This person is quite happy but hiding stuff.

I told a counselor I do not know how to turn it off. She replies, “Why do you think I am a counselor?”

I don’t see auras. I feel things: like a cloud. Like a tiger, like a bear, like a whale, singing.

I think I will go with the whale.