Do they really have toes? I don’t know. Probably, tiny insect toes to hold on.
I still have a daisy blooming outside in spite of weather dropping below freezing off and on for a week. We had snow flurries, but further out in the county, they got inches of snow. Port Townsend is in on the Quimper Peninsula, sticking out from the Olympic Peninsula, so all that water gives us a different microclimate.
This is the second year for my “Christmas stick”. I put it up last year because I had these two kittens tearing things apart.
First I need to get the stick to stand. I had a bare stick, with the angel on top, for a week.
Then I cut four branches from the huge tree in my yard and added them to the stick.
The cats wondered, but this year they are not knocking it over so far. I put up lights and decorations yesterday. Not the glass ones: paper and soft ones. Because I’m not sure about the cats.
The cats still aren’t sure about it. We tend not to have a lot of mosquitoes even in summer, partly because the wind often howls up my street. The mosquitoes are blown inland. Too cold right now.
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.
I had cobra from my job in 2009 and the insurance company refused my bills. Not one bill. Not once. EVERY BILL EVERY TIME: 1. my healthcare 2. my son’s healthcare 3. my daughter’s healthcare 4. my daughter’s orthodontia 5. my dentist 6. my son’s dentist. I had to call EVERY TIME to get them to pay. Calling an insurance company takes 25 or 30 minutes, right? Eventually I asked for customer service who first said it was my fault because “you probably paid the bill late”. I said, “No, I was on time every month.” Then customer service wouldn’t call me back. I finally called their COUNSELING HOTLINE, since it said I would be “paid” $30 to get counseled, and said, “MY LITTLE SISTER IS DYING OF BREAST CANCER AND THE THING THAT IS MOST STRESSING ME OUT IS YOUR INSURANCE COMPANY WON’T PAY THE COBRA BILLS AND I HAVE CALLED CUSTOMER SERVICE OVER AND OVER AND THEY WON’T CALL ME BACK. HOW ABOUT YOU COUNSEL ME HOW TO DEAL WITH THAT!” And I cried. I got a call back from the head of customer service saying “Oh, it’s a computer glitch and we had you misfiled. We have fixed it.” They “misfile” people all the time, or drop patients if they get sick, or say the person didn’t pay on time. I HATE INSURANCE COMPANIES. Anyhow, be warned that insurance companies are there to earn money and will try to avoid paying you in all sorts of ways, including ways that are illegal.
We need single payer healthcare, medicare for all. If we all have healthcare, think of how many small businesses would start up. And why don’t we have single payer healthcare? I think the big corporations don’t want it.
Who is the man in the photograph? I don’t know. This is an old tintype. They came from my Great Aunt, Esther White Parr, married to Russel Parr. Perhaps they are Parrs, because my Uncle Rob did not know any of the people in the four tintypes I have. My sister and I used them for portraits in our china doll houses.I hope he is not the CEO of an insurance corporation, but then, all the white collar white men tried to dress that way then.
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.
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.
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)
I am thinking about tubulin blocker antibodies. How would they work?
About 2 weeks ago, I had trouble walking down the stairs because my quadriceps just did not want to bend. In fact, all of my muscles felt awake and grumpy. As if I were Sleeping Beauty, now awake. Of course, if I was Sleeping Beauty and some jerk kissed me awake, I’d punch his lights out. Hands off!
Anyhow, I concluded that my tubulin antibodies had released. Was I better?
Well, no. It’s been weird. In me it’s the voluntary fast twitch muscles that don’t work when I have a PANS/PANDAS reaction, so they are back on line. The grumpy muscles are the slow twitch ones who essentially are screaming “WHERE HAVE YOU BEEN, I’VE BEEN DOING ALL YOUR WORK SINCE MARCH!” Nine months. The fast twitch muscles are weak, the slow twitch muscles don’t trust them and I am having trouble getting it all to work together.
My balance is fine. It just all hurts and is a bit unreliable.
I was in Michigan for Thanksgiving, staying with old friends. My oldest friend there is 80 and does not have wi-fi or any internet. That made doing any blogging quite a challenge and many thanks to everyone who pointed creative spelling. I would go to her son’s house daily and try to put up the work I’d done at her house. Not the way I usually do it and three kids distracting me, which I enjoyed.
It is bowling that makes me realize how weird my muscles are right now. I went bowling with the middle (15) and younger (11) child. Mom watching all of us. My role is Weird Aunt, more or less. I have bowled maybe 12 times in my life. I guttered the first three balls, a 9 pound orange beauty. My muscles all started screaming at me at once in my upper and middle back. Oh, I thought. So I slowed way down and tried to slow bowl. Next was a strike. I ended up bowling 100, which I guess is not so bad for someone who really has no idea what they are doing. My muscles were grumpy but slow was ok and I didn’t pull anything badly. Next morning I am quite stiff.
I am trying to figure out how to rehabilitate the muscles. Do I exercise? Slowly? It’s as if half a team has been missing for 9 months and is now back. The remaining team members are tired, pissed off, and have figured out how to work without them. They aren’t very pleased about relinquishing control and they don’t trust the part of the team that’s been missing. I would go to my doctor and ask to see a neurologist or ask for physical therapy, except that since PANS/PANDAS is barely believed in in children, there are only a few doctors that work with adults and other doctors seem to think they are quacks. One writes articles for Psychology Today. I’ve thought about contacting him, but he’s a psychiatrist. How much do psychiatrists know about muscles?
Let’s extrapolate this too, to the people with really bad chronic fatigue. Presumably they have antibodies to tubulin that affects more muscles, fast and slow twitch. No wonder they lie in bed. I would presume that they are hypoxic too, if they could walk, but they barely can. The Functional Medicine doctors are treating folks with hyperbaric oxygen and I think it might help with these muscles that don’t work and can’t move. It is sneaky. It’s not that the muscle can’t move at all, it isn’t paralyzed, it’s just that the exhaustion and fatigue that comes after moving it is terrible. The body says very very clearly : “DON’T DO THAT.” And we are still in the infancy of looking at antibodies, so we aren’t measuring them. I was going to say we can’t type them, but that’s not true. We are using monoclonal antibodies to treat cancer, so there are ways to isolate and type them. Medical science may explode with this and can’t you see the potential for misuse? Imagine an army affected by a tubulin blocker antibody, against an army with a tubulin augmenting antibody. Holy moly. It has the potential to be really really horrific, which is why I am putting all this up on everything2. Keep it in mind, ok? Nothing like making information public to prevent secrets from screwing us over.
And that’s the news from me. “Har det godt!” which is Danish for “Have it good!” or have a really good day.
When you think about it, all the children in the world are adding at least one Adverse Childhood Experience score and possibly more, because of Covid-19. Some will add more than one: domestic violence is up with stress, addiction is up, behavioral health problems are up, some parents get sick and die, and then some children are starving.
From the CDC Ace website:
“Overview:Adverse Childhood Experiences (ACEs) are potentially traumatic events that occur in childhood. ACEs can include violence, abuse, and growing up in a family with mental health or substance use problems. Toxic stress from ACEs can change brain development and affect how the body responds to stress. ACEs are linked to chronic health problems, mental illness, and substance misuse in adulthood. However, ACEs can be prevented.”
Well, can they be prevented? Could Covid-19 be prevented? I question that one.
I have a slightly different viewpoint. I have an ACE Score of 5 and am not dead and don’t have heart disease. I spent quite a bit of time thinking about ACE scores and that it’s framed as kids’ brains are damaged.
I would argue that this is survival wiring. When I have a patient where I suspect a high ACE score, I bring it up, show them the CDC web site and say that I think of it as “crisis wiring” not “damaged”. I say, “You survived your childhood. Good job! The low ACE score people do not understand us and I may be able to help you let go of some of the automatic survival reactions and fit in with the people who had a nice childhood more easily.”
It doesn’t seem useful to me to say “We have to prevent ACE scores.” Um. Tsunamis, hurricanes, Covid-19, wars… it seems to me that the ACE score wiring is adaptive. If your country is at war and you are a kid and your family sets out to sea to escape, well, you need to survive. If that means you are guarded, untrusting, suspicious and wary of everyone, yeah, ok. You need to survive. One of my high ACE Score veterans said that the military loved him because he could go from zero to 60 in one minute. Yeah, me too. I’ve worked on my temper since I was a child. Now it appears that my initial ACE insult was my mother having tuberculosis, so in the womb. Attacked by antibodies, while the tuberculosis bacillus cannot cross the placenta, luckily for me. And luckily for me she coughed blood at 8 months pregnant and then thought she had lung cancer and was going to die at age 22. Hmmm, think of what those hormones did to my wiring.
So if we can’t prevent all ACE Scores, what do we do? We change the focus. We need to understand crisis wiring, support it and help people to let go of the hair trigger that got them through whatever horrid things they grew up with. 16% of Americans have a score of 4 or more BEFORE Covid-19. We now have a 20 or 25 year cohort that will have higher scores. Let’s not label them doomed or damaged. Let’s talk about it and help people to understand.
I read a definition of misery memoirs today. I don’t scorn them. I don’t like the fake ones. I don’t read them, though I did read Angela’s Ashes. What I thought was amazing about Angela’s Ashes is that for me he captures the child attitude of accepting what is happening: when his sibling is dying and they see a dog get killed and he associates the two. And when he writes about moving and how their father would not carry anything, because it was shameful for a man to do that. He takes it all for granted when he is little because that is what he knows. One book that I know of that makes a really difficult childhood quite amazing is Precious Bane, by Mary Webb. Here is a visible disability that marks her negatively and yet she thrives.
A friend met at a conference is working with traumatic brain injury folks. They were starting a study to measure ACE scores and watch them heal, because they were noticing the high ACE score people seem to recover faster. I can see that: I would just say, another miserable thing and how am I going to work through it. Meanwhile a friend tells me on the phone that it’s “not fair” that her son’s senior year of college is spoiled by Covid-19. I think to myself, uh, yes but he’s not in a war zone nor starving nor hit by a tsunami and everyone is affected by this and he’s been vaccinated. I think he is very lucky. What percentage of the world has gotten vaccinated? He isn’t on a ventilator. Right now, that falls under doing well and also lucky in my book. And maybe that is what the high ACE score people have to teach the low ACE score people: really, things could be a lot worse. No, I don’t trust easily and I am no longer feeling sorry about it. I have had a successful career in spite of my ACE score, I ran a clinic in the way that felt ethical to me, I have friends who stick with me even through PANDAS and my children are doing well. And I am not addicted to anything except I’d get a caffeine headache for a day if I had none.
For the people with the good childhood, the traumatic brain injury could be their first terrible experience. They go through the stages of grief. The high ACE score people do too, but we’ve done it before, we are familiar with it, it’s old territory, yeah ok jungle again, get the machete out and move on. As the world gets through Covid-19, with me still thinking that this winter looks pretty dark, maybe we can all learn about ACE scores and support each other and try to be kind, even to the scary looking veteran.
Refugees welcome - Flüchtlinge willkommen I am teaching German to refugees. Ich unterrichte geflüchtete Menschen in der deutschen Sprache. I am writing this blog in English and German because my friends speak English and German. Ich schreibe auf Deutsch und Englisch, weil meine Freunde Deutsch und Englisch sprechen.