This is a sunset, not smoke. Right now the east coast of the US has spectacularly bad air quality from forest fire smoke. My son is going to work out indoors today, since he is in the DC metro area.
When I moved here, I was delighted by the air quality. That was 23 years ago. In the last five years, we have had smoke blowing in from forest fires to the east or south or north four of the five. Last year I built a home air purifier because the smoke was bothering my lungs even inside the house. It helped very much. I stayed inside for 8 days. The cats did not want to go out either.
“Some say the world will end in fire, some say in ice.” Ironic if it is smoke that takes us out.
I was trying to think of a debacle. Oh. Getting my fourth pneumonia, March 21, 2021, Covid-19. This is the first pneumonia that put me on oxygen. The fast heart rate, dropping ten pounds, and feeling anxious were familiar from the other three. This photograph was from December 2021, visiting Maryland. We did a bike ride. I was pretty happy that I was able to do it, though the last mile had a sloping uphill that made me think I was not very strong. Oxygen helped.
And Covid-19 is a debacle that we are still trying to understand and absorb and avoid and heal and recover from. I am reading an article that entirely denies viruses existing. I guess it’s like porn on the internet: they say if there is a story, there is a porn version. Every possible idea of what has happened over the last three years is out there, though this article doesn’t make any sense at all.
I don’t remember who took the photograph of me. It may be a steathie. I needed oxygen at night and whenever I was being active, but not at rest. Ok, at rest talking.
Things and people were lost and found and lost during Covid-19. I spent a lot of time on our beaches. I am so grateful for the beaches.
I went to Swedish Edmonds medical for another round of lung testing last Friday May 26. Since I have to cross the Hood Canal Bridge and take a ferry, I leave early. Arriving early, I walk around the building and they too had wonderful rhododendrons and iris and roses!
I am still thinking about the Inflammatory Brain Disorder Conference.
The researchers and physicians are talking about the immune system as if it is broken in Long Covid and ME/CFS and the other illnesses, but I am not sure I agree. Maybe the immune system knows what it is doing. Maybe Covid-19 is a really really nasty infection and the immune system sends out antibodies to make us stay down, stay in bed, rest and keep from catching something else. Maybe an antibody that suddenly makes you weird will make you isolate and hide and not interact with the other potentially infectious humans.
Ok, the inflammatory brain disorders that destroy the brain, those are not adaptive. However, I’ve thought that MC/CFS was a “repair mode” since residency.
When I had my third pneumonia in 2014, I refused to admit to myself that I had chronic fatigue. It was sort of obvious. I went back to work six months after I got sick and seeing just four or five patients left me exhausted. I would come home and sleep on the couch. I also skipped breakfast, because I would go to sleep as soon as I ate. My blood sugar was fine and it was not a food allergy. It felt as if my body wanted to do repair work and wanted me to sleep while it was doing the repairs. I would sleep after lunch. For the next six months of work, I slept twelve hours a day and hoped that I would not have more than five patients. Also that I would not get sick.
We had everyone who had upper respiratory symptoms or a cough wear a mask and I wore one too, hoping to not get another pneumonia. That worked. I only got sick when I went to work in another hospital clinic system. I kept walking into rooms with patients with their masks off. I got Covid-19 in a mere five weeks there, after going a year at my clinic without getting it.
I spoke to a friend yesterday. She was talking about her damaged immune system. I said I didn’t think of it as damaged. With enough stress and infection, I think the immune system gets primed. And then it is as if it has PTSD: the immune system says, “Enough already! We are not going to LET you overdo and get sick again! We are putting you DOWN to sleep if you overdo!” It is an extreme version of “listen to your body”, as if the body is shouting. The immune system is hyperalert and goes all out if there is any threat or suspected threat.
Maybe we need to be more gentle with ourselves and each other. The US culture is so oriented to production and work and money as success. But is that really success, if we work 20 hours a day and drive our immune system to desperate measures?
Maybe we need to learn to relax. To take time off. To breathe.
And the talk about Mast Cell Activation Disorder said exactly that. We need to teach how to go from the sympathetic fight or flight crazy to the quiet, relaxed, parasympathetic state. That quiets the immune system down very nicely.
It won’t fix everything, I am not saying that. But it is something everyone can learn. Slow breathe, in five and out five. Practice.
Breathe.
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The tree is a Redwood and it’s in the Chimacum Woods Rhododendron Nursery. Not just rhodysand on the Olympic Peninsula.
After my fourth pneumonia, I couldn’t stand the chest strap any more. Chest strap? say the guys. “What chest strap?” Dudes, bra, brassiere, whatever you want to call it.
It made my lungs hurt. My lungs already hurt. I thought, ok. I am 60 years old. I am “small” and don’t need any “support” unless I go running or something that really makes breasts jiggle. Don’t need a bra for dancing. And anyone who stares at my tits, well, gosh, thought you guys didn’t like “old” ladies. I don’t care.
Let’s think about that chest strap though. Guys, have you ever tried a bra on? What exactly is a bra for? Well, running or soccer or pole vault or football or all sorts of other heavy athletics, yeah, it can be really uncomfortable. Strap those babies down. But the day to day bra is to enhance support, stop jiggle and hide nipple action.
Uh, and meanwhile guys can take off their shirts in public. I think this is unfair. They have nipples too and breast tissue, just less.
Also, what is wrong with jiggle? The breast tissue drains in multiple directions, through lymphatics. I think some breast jiggle may be important to that drainage. Jiggle means slut to guys? Well, go suck a lemon, guys. And if you really stare at my breasts when I am talking to you, I might not sock your eye, but I sure as hell will lose all respect for you. All. And why are nipples evil in women but not in men? Because they are functional in women and men are jealous? Tit envy.
Now support. Yes, there are women who are so well endowed that they have back pain and may choose a breast reduction. This is covered by insurance if the clinician documents that pain over time. And breasts do change with time and age. But when is our culture going to accept and even celebrate aging! We do congratulate people turning 80 or 90 or 100, but otherwise older women are often ignored. I am delighted by the older actresses and musicians who are now finding parts and are still out there and dancing. Go Tina Turner, the legs go last!
I also think the chest strap is not nice for the lungs. Certainly not after four rounds of pneumonia, but bras have to be tight enough that they do have an effect on a deep breath. I’ve retired my bras. Ok, if I am in a Madonna mood and want to wear a lace see through white shirt, then I might pull out the scarlet one for the evening, but otherwise, no way. How good are bras for people with asthma, with emphysema, with post covid?
Lose that chest strap, ladies, and take a deep breath. Breathe free.
Sailing with my father after I’m divorced we take my two children. They and I are small. My father is frail, 55 years of Camel cigarettes in his lungs. “Papa,” I say, “How would we pull you in if you went overboard? We aren’t strong enough.” Nor is he strong enough to pull me in. My father thinks. “You are right,” he says, “We’ll make a Go Bag.” A 3 to 1 pulley, with a clip. We can clip it to the boom and push it out over the water. Attach the pulley to the life jacket and I can winch nearly anyone aboard. Maybe. We have it in a dry bag, with towels and chocolate and a set of sweats, a space blanket because the water is cold here, 45-55. My father knows, I’m sure, that if he falls in, he’d be unlikely to survive even if I did reel him in, an unlikely catch. We wear our life jackets and the kids do too.
One time we hit container ship waves when my son is on the bow. He is thrown up and drops, flat, prone on the bow, holding on. This boat has no railings but my children pay attention.
We never have to use the pulley.
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At first my father said that we could unhook the haul down and use the boom, but I said, if it’s me and two little kids and I have to drop sail and get back to someone, that is too hard. How do we make it easier?
For the Ragtag Daily Prompt stable, because maybe love is the only stable thing in an unstable world.
The bones of the great blue heron are so light, that I think it is standing on the floating kelp beds. I’d wish my bones were that light, but that would be osteoporosis. Maybe I could come back as a heron.
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.
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The photograph is from Swedish, Cherry Hill, bird’s eye view from the balcony.
I am fractious and grumpy when I first go to pulmonary rehabilitation at my local hospital.
This is because I have local hospital PTSD because of past treatment. However, there is only one hospital in my county.
I am anxious and tachycardic when I first arrive. I have sent patients to cardiac rehabilitation and to pulmonary rehabilitation, but it’s the first time I’ve gone. My doctor did not refer me until I ask her. I thought it up while I was talking to my insurance company’s chronic care person. You know you are desperate when you call your insurance company for ideas. The insurance company is motivated to pay for pulmonary rehabilitation because I am expensive. I have had loads of tests this year and cost a bunch of money. They would like me well. Me too. So yes, I qualify for pulmonary rehab by virtue of four pneumonias in nineteen years and this time a year on oxygen continuously and still part time now.
I have two people to help me. One is a respiratory therapist and the other a physical therapist. I am an unusual referral. Many of their patients have chronic obstructive pulmonary disease and/or emphysema, usually from cigaretes, but also from things like asbestos or alpha-1-antitrypsin disorder or progressive muscular disorders.
They explain. There are 24 visits, over 12 weeks. I come in twice a week. I am weighed, they ask about symptoms, and we go to the small gym. It has three treadmills, three stationary bikes and three of those semi-horizontal not really a bike things. I pick the treadmill. After I describe my lung weirdness, that a fast heart rate preceeds hypoxia, they put a wrist pulse oximeter on me. Unlike the little finger ones, it can pick up heart rate and oxygen rate even when I am walking on the treadmill. My blood pressure and pulse is checked and I start the treadmill. I go slowly the first time. My heartrate is over 100 to start with, but that’s partly the PTSD reaction. I can slow my heart rate just by slowing my breathing and not talking, into the 80s.
Ok, not really. I start walking on the treadmill and go for 30 minutes. Blood pressure and heart rate are checked mid way through. The only time I drop my oxygen level is when I walk AND talk and then I drop it to 87. I stop talking.
After the treadmill, there is another 15-20 minutes of “patient education” about the lungs. This is usually a video, discussion and handouts. They can have up to 3 people simultaneously. At first there is another woman, but she finishes her 12 weeks. She is still on oxygen. I am doing the treadmill without oxygen. “What is your goal?” asks the respiratory therapist. “I want to ski this winter.” I say. She blinks.
The patient education alternates with lifting hand weights. The physical therapist does that with me. There is a stretching session each time too. The weights are slow twitch muscles so that is easier for me to push.
On the third day on the treadmill, I start pushing myself. My heart rate before starting was 81. I get to 120. “Um, don’t push it further than that.” says the therapist.
“Why not?” I say.
“Well, the guidelines are that we’re supposed to not have the person exercising at a heart rate of more than 30 over their baseline.”
“Oh,” I say. I am at 40 over. I slow down a little, aiming for a heart rate of 115. My blood pressure is between 90 and 115 systolic to start with, even anxious, and goes up to the 140s or 150s in the middle of exercising. If I talk too much while I am on the treadmill, my oxygen level starts to drop. It drops the third time down below 88 and the therapist says, “Shall I get oxygen?” “No,” I say. “I just need to shut up.” I do and my oxygen level recovers.
I steadily improve on the treadmill. I can enter my weight and it will measure “METS”. I start out at only a few mets. My goal is as high as I can go. By week 8 I am pleased to be alternating walking and running and I am averaging over 8 mets. Bicycling takes 7-9 mets, and more if you race. I want to return to bicycling.
Then I get my flu vaccine. I feel terrible the next day and cancel my rehab. I see my doctor for a routine visit the next Tuesday and she gives me the covid booster. That hammers me. I go back to being tachycardic much more easily and my fast twitch muscles are not working again. I contact my cardiologist and primary, do I put pulmonary rehabilitation on hold?
I decide to go and I do not drop my oxygen. However, I get tachycardic much more quickly, I can’t get up to over 8 mets, and it feels truly terrible. And my muscles give me hell and hurt horribly for the next two days. I put pulmonary rehab on hold and wait and do slow twitch exercises. The working theory is that there are antibodies to my fast twitch muscles, so the vaccines have activated my immune system. Not just antibodies to influenza and covid, but also the ones that make my muscles not work and hurt. A fibromyalgia/chronic fatigue flare. I start sleeping 12 hours a day again, as I did when I got sick over a year ago. I am really anxious at first but there are no signs of pneumonia, I am not hypoxic, and it’s mostly muscles and fatigue.
After three weeks I return and do my last four pulmonary rehab visits. It hurts way more than the first 8 weeks and it is way more exhausting. I don’t like sleeping 12 hours a night. It could be worse, though. Some people have chronic fatigue where they have to lie in bed most of the time. I don’t have that, so I consider myself lucky. Mine is fast twitch muscles only. Presumably theirs is fast and slow twitch muscles. I have an annoying but relatively mild version of chronic fatigue.
I graduate from pulmonary rehabilitation. Many thanks for the help with my muscles! I want a wrist pulse oximeter, but they cost $700 and I dont’ really need it. By now I can tell when I have a fast heart rate and I can tell when I am getting hypoxic. It makes me goofy and silly, though I normally have that anyhow.
Many thanks to Jefferson Healthcare’s Pulmonary Rehabilitation Department. And if you have had pneumonia more than once or long Covid, consider asking your doctor to refer you. It makes me much more confident about exercising and pushing myself and what is safe. And eventually these stupid antibodies will fall off the receptors again. I hope.
PS: The Rehabilitation Department was closed then open then closed then open during the last two years. They did not have many people when I was there. Get in soon, because there are limited spaces!
Discover and re-discover Mexicoβs cuisine, culture and history through the recipes, backyard stories and other interesting findings of an expatriate in Canada
Engaging in some lyrical athletics whilst painting pictures with words and pounding the pavement. I run; blog; write poetry; chase after my kids & drink coffee.
Refugees welcome - FlΓΌchtlinge willkommen I am teaching German to refugees. Ich unterrichte geflΓΌchtete 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.
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