Category Archives: worry

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Prayers for people in Turkey and Syria

I took this photograph with my phone yesterday before I heard the news.

The ambulance has been out for a week or so, along with the doll tent. Two doll babies, the doll doctor, various pieces of equipment. I took the photograph because the cats keep “helping” and it keeps looking a bit like a disaster. Sigh. I wish they were just doll disasters with giant cats wandering through, not real earthquakes.

I wrote Flooded after the tsunami in Japan, about PTSD and about feeling helpless watching. I think we all have a little post-Pandemic PTSD and are more hair trigger and more ready for fight or flight.

Send prayers and money and huge blessings on on the first responders that are heading there or are already there.

For the Ragtag Daily Prompt: strange.

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DIY FUD

I am Elwha, cat.

My mother has changed. For the first year she fed us many times a day, but now she is nefarious. She left for three weeks and a man came in daily. He fed us but less generously. She now feeds us twice a day and less than in the past.

I make offering to the gods in hopes of more food, that the gods will influence my mother and turn her good again.

I place the mouse effigy in my bowl. A mouse would be delicious and if alive it would be delightful fun as well! We watch the birds out the windows and long to catch them.

There is no response from Mother or the gods.

I try again.

Another mouse, a symbol of technology, that sponge that she removes fur from furniture. Mother seems to love technology and will not let me lie on the warm keyboard. She lets me have this technological marvel. I have chewed it but it is not nutritious and gives me nothing. There are wires inside. It is fun for play but not edible.

I will wait and hope that the gods influence my mother and that more food is forthcoming.

_____________________

For the Ragtag Daily Prompt: nefarious.

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In the box

Wednesday was interesting and frustrating and part was beautiful.

The beautiful part was arriving at the Kingston, Washington ferry dock early. I took photographs of the quite gorgeous light display while I waited for the 6:25 ferry.

On the other side, I drove to Swedish Hospital, Cherry Hill. There I had another set of pulmonary function tests. The technician was very good. She said that since I have a normal forced vital capacity it does not look like asthma. However, a ratio was at 64% of normal, which is related to small airways.

“Have you had allergy testing?” she asks, “And a methacholine challenge?”

“Yes,” I say. “Both. In 2014. No allergies at all and the methacholine was negative.”

“Hmmmm.” she says.

Afterwards we call pulmonary. I have an appointment on this next Wednesday but we call and ask if there is a cancellation and I can get seen today, since I am two hours from home already.

Yes, there is, but I have to hurry to Issaquah, Washington.

There is an accident on the I90 bridge, so I do not think I will make it. But I am there by ten and the pulmonologist will see me. I check in, fill out paperwork, wait, go in the room, a medical assistant asks questions.

The pulmonologist comes in. He is nice and is able to pull up the chest CT from 2012, two of them since the first one “couldn’t rule out cancer”. Since I am referred for hypoxia without a clear cause, he questions me about my heart. Echocardiogram, zio patch (2), bubble study, yeah, it has all been normal. I describe getting sick and tachycardic and hypoxic and coughing.

“Do you cough anything up?”

“No.”

“Do you cough now?”

“Yes, if I exercise or get tired.”

He is like many physician specialists that I have seen. He has a number of pulmonary diagnoses, or boxes. Emphysema, COPD, lung cancer, bronchiectasis, chronic bronchitis, the progressive muscular disorders. All of those are ruled out in the past. So he puts me in the asthma box.

“I thought asthma was ruled out with the methacholine.” I say.

“Well, you have SOMETHING going on in the lower airways, and it was present in the 2021 and the 2012 pulmonary function tests. Maybe an asthma medicine will help.”

I mention ME-CFS and my muscles not working right, but he only deals with lungs. He won’t say a word about those disorders.

Sigh. I do not get the improvement with albuterol that diagnoses asthma on the pfts and never have. The formal reading of the pfts is that I do not meet criteria for asthma but there is something in the lower airways.

Monsters, maybe? I’ll try the inhaler, though with skepticism. Antibodies seem like a better guess, but antibodies are outside this pulmonologist’s set of boxes.

________________________

The photograph is from Swedish, Cherry Hill, bird’s eye view from the balcony.

Methacholine test.

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Galatea

I walked downtown in the sun the last two days. It is gorgeous with the leaves still on the trees and falling. Usually it is raining now, so the beautiful fall weather is a little disconcerting. A bit worrisome, even as we enjoy it.

The statue is Galatea, the Haller Fountain, here: https://porttownsendvirtualartmuseum.org/pages/Galatea.html.

Galatea is one of fifty Nereids, sisters, born to Nerius, the God of the Sea in Greek Mythology. The statue that was granted life in Pygmalion by Aphrodite is also Galatea. Galatea is also the fourth inner closest moon of Neptune.

If she comes to life, what will she do? I keep thinking that the earth is coming awake and shaking us to wake us up. Storms and earthquakes and hurricanes and floods. Wikipedia says “The Nereids symbolized everything that is beautiful and kind about the sea.” That seems ironic too, as the sea starts to rise more and more.

We can’t break the earth’s laws, or she will break us.

For the Ragtag Daily Prompt: law.

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split

The pandemic splits the thin veneer of civilized behavior
like a heavy maul falling on delicate antique wood
and wild fear emerges and riots through the streets
while some hide, some stay calm
and try to sooth the selfish unleashed beast

For the Ragtag Daily Prompt: veneer.

Taken in 2015.

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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.

https://desertification.wordpress.com/2022/10/08/healthy-forest-project-launched-to-protect-mongolia-forests-for-future-generations/

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.

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A good reaction

The last ten days sucked but the results are probably good.

What? Wait, why?

I saw the pulmonologist week before last on Wednesday. Her office does not give the new Covid-19 shot but does give flu shots. I got my flu shot. It didn’t seem to bother me much except that I felt a bit tired and grumpy.

I saw my family practitioner on Tuesday, after my pulmonary rehab. For the first time I did not improve in pulmonary rehabilitation (12 weeks, twice a week). I also seemed to have a faster heart rate, up to 140 beats per minute, on the treadmill. My doctor had me walked and even going around the block, my heart rate went to 115. Weird, I thought.

My family doctor did have the new Covid-19 vaccine so I got that. The next day I was more tired and grumpy. On Thursday I lost ground on the treadmill and felt awful and my heart rate just seemed high all the time.

Oh. This is an appropriate reaction for me to two vaccines one week apart. What? you say. Well, when I get pneumonia (four times), I have a fast heart rate response, shortness of breath, fatigue and I feel grumpy and wired. The theory is that I have antibodies to the dopamine receptors, that turn the receptors ON. Dopamine can raise your heart rate. At the same time, I have antibodies to tubulin. Those antibodies make my fast twitch muscles not work right, as well as lung cilia. So: fast heart rate, treadmill is much more difficult, and I started sleeping ten hours a day.

This means my immune system is working. It is making LOTS of antibodies, which is what I theoretically want it to do, though I would rather not have the dopamine and tubulin ones. Just antibodies to influenza and Covid-19. However, my immune system seems to have PTSD and when it makes antibodies, it makes them to EVERYTHING. This makes me very tired, grumpy, screws up exercise and gives me shortness of breath and a fast heart rate.

How long will it last? I am not entirely sure. With infections, antibodies rise and then fall over 3 to 6 or more months. The naturopaths say that food intolerance antibodies fall in three weeks if you stop eating the offending item. I want my Covid-19 antibodies to persist for 3-6 months or more, flu antibodies as well, but I’d like the ones that give me a fast heart rate and shortness of breath to drop right away!

I guess I will find out. At least my immune system works, however oddly.

Blessings and peace you.

I took the photograph of the Great Blue Heron just after she took off yesterday. I am trying to catch more birds in flight! Mostly I catch parts of birds, the tip of a wing, or feet. I am really pleased with this one.

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Vape

First, the definition of vapor:

noun

  1. The gaseous state of a substance that is liquid or solid at room temperature.
  2. A faintly visible suspension of fine particles of matter in the air, as mist, fumes, or smoke.
  3. A mixture of fine droplets of a substance and air, as the fuel mixture of an internal-combustion engine.

So vaping is smoking. It can be called vaping, but that is to trick us into thinking that it is not smoking, that we are not sucking chemicals into our delicate lung tissue. We only have one set of lungs. Lungs are like a tree, either the roots or the leaf parts upside down. Air is drawn in by our muscles expanding the chest and diaphragm, down the trachea, the bronchi, the bronchioles and at last to the alveoli, where tiny veins wrap each alveoli, trading carbon dioxide for oxygen.

I think of smoking as every cigarrette distroying an alveolus.

Vaping too, vaping is smoking. The nicotine is suspended in a solution and the vaporizer heats up until it is in vapor form. I started reading about vaporizers at least a decade ago. There were over 500 different types, mostly made in China, and there are all sorts of solutions. I was horrified to read that ethylene glycol was one of the solutions that held nicotine. When a dog drinks antifreeze, ethylene glycol, it is poisonous to the brain. Does anyone think that we should inhale smoke with antifreeze and nicotine in it? Really?

There is no control of what is put in the solutions. We don’t know what they will do long term but we know that nicotine is addictive and damages the lungs. Some of the vaporizers get so hot that the metal is also vaporized. Heavy metals are clearly bad for the lungs and poisonous as well.

Here is an article from the U of Colorado Medical Center with further reasons NEVER to start vaping. Because vaping is smoking: don’t let the term fool YOU. 4 reasons why you should stop vaping.

For the RDP: vapor.

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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.

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Covid-19: long haul II

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

Red alert. I have not heard about this.

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

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

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

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

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

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

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

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

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

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

Do you think people are instinctively quitting their jobs?

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

Prayers and blessings all around.


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

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