Category Archives: you know you are hypoxic when

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The work of disability

I look up the CDC website to see how many people are disabled. The CDC says that 27% of adults in the US have a disability. Yes, that is one in four. https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html.

I find being disabled to be a ton of work.

I think the view of disability in the US is often people who sit at home and have money thrown at them from the government.

This is not so, not so, no, no, no.

In clinic a patient needs a new socket for his artificial leg, having had a cancer amputation. He is an expert still working in disability exams, so we do a visit where he dictates much of my note, because in order to get a new socket, medicare requires very specific information in the clinic note. We also have notes from physical therapy and his occupational therapist and the company that makes the sockets. Why does he need a new one? He has lost weight and the old one doesn’t fit any more so he can’t walk securely.

Even so, I think it took six months and we kept redoing versions of the paperwork.

Another patient needs a new electric wheelchair. That one takes a year of repeating insistence and paperwork.

After my March 2021 pneumonia, I am disabled, which pisses me off. I like my work. It’s unclear how long I will be on oxygen and since we’ve been working on a diagnosis besides “gets pneumonia super easily” since 2003, it’s hard to predict the trajectory. I don’t know if I will be on oxygen permanently. It is exhausting to drag myself to physician visits, in four different hospital systems. Oh, and a patient can apply for patient assistance with the finances, but then all four have different paperwork. I am sick as snot and have to try to keep track of the bills from four systems and four sets of on line passwords and where is the stupid appointment? Edmonds? Seattle? Bremerton? Augh. The fatigue that accompanies the pneumonia makes it hard to cook, hard to clean, hard to comprehend bills, exhausting to make phone calls. Anyone want to trade? I’ll work and you can be disabled?

My disability company requires paperwork too, lots of it, and my taxes, and there is a long list of rules that I reread periodically. I needed an attorney to sort out the rules, since the disability company won’t answer my questions.

Now I am off oxygen and better, though still dogged by fatigue. I think that is probably permanent, but then I sometimes hope it’s just that I am finally rebuilding muscle, since the fast twitch muscles didn’t work for two years. They are a bit recalcitrant now.

And I am not in a wheelchair, have not had an amputation, am not in a rehab. If you have to take buses in your wheelchair everywhere, need two people and a crane to get you out of bed into the wheelchair, have to use a computer to talk for you, imagine. Anyone who thinks disability is easy money is insane.

It’s not clear if I can return to work. I might get pneumonia number five, which would probably take me out. No one knows how to lessen my risk. And I don’t have the energy and do not know if I will.

All the unknowns and unclears and we don’t knows. No one is disabled for easy money because it’s a job trying to get well or trying to survive it. And yet, I am happy to be alive and even to be able to dance some! Dance on!

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Long Covid and framing

Long Covid is being framed as the immune system going nuts and there are all sorts of ideas about what it is doing and why. And it may be that more than one of them is correct. But the assumptions that I am hearing are that we have to “fix” it. A disease model.

Since I have been through four rounds of pneumonia, and two other rounds that were probably also flares, I have a different feeling. I think that Covid-19 is a really nasty virus and that the immune system is CORRECT to be on high alert and upset.

But wait, you say, we are just supposed to put up with it?

No, that is not what I am saying. Treat infection. I wouldn’t be here if it weren’t for penicillin and clindamycin, not to mention that we know that tuberculosis is airborne and infectious. I would most probably have died as an infant if we did not know what we did about tuberculosis. However, rather than thinking of my immune system as broken now, I am thinking of it as being hyperalert. Perhaps having PTSD. What it is really saying is, “Do not get another infection.”

How does it say this? In my case, relatively mild chronic fatigue. Also, slower healing each round, this time taking two full years to get back to a chronic fatigue baseline. I am still feeling very lucky to not have a hypoxia and permanent oxygen baseline. I am also feeling lucky that my fast twitch muscles work again. But I have about half of what I would consider my “normal” energy. But don’t we all judge that “normal” from our peak energies in our teens and twenties? One friend says, “Welcome to your sixties!” when I complain that each time it takes more work and is slower rebuilding muscle.

Am I an outlier? I don’t think so. I think I am the canary in the coal mine, warning of what can come. I think that ANYONE can get a version of this, resulting from too much stress, infection or a combination of the two.

I don’t think we have to develop medicines to tweak the immune system. I think we have to change our CULTURE in the United States. We have to learn to value the parasympathetic state, not just the sympathetic fight or flight, aggressive, go go go, peak performance state. I think we are driving ourselves nuts and setting ourselves and our children up for illness and damage and a highly unhappy immune system.

So my approach to my version of PANS or Long Covid is to work on the parasympathetic state. Listen to my body. Rest. Think about what I want to do and then plan half of it. Be realistic about my energy level. Because if I can convince my immune system that I will take care of myself as best I can, and rest daily, and not be crazy, it will stand down. It will calm down. It doesn’t need drugs as much as rest, good food, good friends, and some work but not too much.

In a high sympathetic nervous system state, the immune system works less well. It is hyperalert too. People are more likely to develop auto-immune diseases, with Hashimoto’s thyroiditis being the most common. People are more likely to get infections too. We have to learn to value and support the parasympathetic nervous system.

The start is rest. If that sounds awful, the next step is breathing. Five seconds in, five seconds out, count and use a timer. Start with a couple minutes and work up to twenty. Pay attention to how your body feels at twenty minutes. It may feel unfamiliar. It’s also hard to keep paying attention to that five seconds in, five seconds out, even if you count. I start thinking about my grocery list or food or a friend I want to call and I have been doing this for YEARS. When you realize that you are not counting, return again.

I am a minimalist on pills, any pills. Supplements, vitamins, prescription. None of the pills grow on trees so I don’t distinguish between “natural” and um, what, “unnatural”? I think of it as “less tested” and “more tested”. As an allopathic physician, I prescribe when necessary and I get rid of pills whenever I can. It is better to take a daily walk and eat healthy food. And maybe take a nap too.

So this is where I start. I attended a whole program on LDN this week, low dose naltrexone. It is being used for fibromyalgia pain and for Long Covid and ME/CFS fatigue and brain fog. It has a very reassuring safety profile, pharmaceutical companies don’t want to fund research because it is old and relatively cheap, and we don’t know how long to put people on it, or what it does long term. More detail soon.

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One thing I am doing for health and joy is dancing. I try to dance at the Bishop Hotel every Tuesday, because it makes me so happy. The music makes me happy too and my friends.

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Air purist

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.

For the Ragtag Daily Prompt: purist.

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Frame

What is the tree and where is it?

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 rhodys and on the Olympic Peninsula.

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Lose the chest strap

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.

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What the body wants

My lungs are much much better than a year ago, shown by no problem at altitude at rest. Of course, I did not exercise heavily above 5000 feet, but walked a lot.

The last three days I have been waking up very very stiff, knees hurting when I walk downstairs, and throat closed again.

I think it’s about work. I am contemplating going back to work. I am getting a clear “not yet” message from my body. I was sick for two years and it’s only been a month that my muscles have been working normally. Same with lungs. So I think the stiffness is the body resisting.

In clinic sometimes I would have people draw two charts. A pie chart of a day. The first chart is how they are spending their days now. The second chart is what they want. In order to do more of what you want, you have to do less of something you are presently doing. What are you going to cut out? Not food or sleep or baths or maintaining the home. How about television?

Anyhow, I added a third chart, to do a few days after the first two. Draw a pie chart of what your body wants. I had one person say, “But my body just wants to sit and do nothing!” I said, “So when are you going to do that?” At first she said, I can’t, I can’t, I can’t. After a while she said maybe. Then she rearranged work and took a two week vacation. She said, “After a week, one day I had a book, a cup of tea, the cat on my lap, the dog on my feet, and suddenly my body just entirely relaxed. And then it stayed relaxed.”

She went back to work. “Are you still relaxed?” I asked. “Not all the time, but when I start tightening up, it’s often because I am taking on someone else’s problem. I am learning to let it be their problem, not mine.”

I am listening to my body too. What does it want? Not yet, for work. I have some work at home, or some jobs to do there first.

Wise body, I am listening.

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Long Covid and post pneumonia update

I was up above 5000 feet last week and did not need oxygen.

This is wonderful! I was on oxygen continuously from March of 2021 for a year and a half. I was really getting better and then had my Covid booster in early October. I crashed again. Do I regret the shot? No, because the crash is because antibodies went back up. Only some of them, though. My muscles and lungs were not working well again, but brain was fine (ok, some people do not like my brain, but they are idiots) and aside from having to avoid gluten, no digestive stuff.

About a month ago I really started feeling my fast twitch muscles work again. It was two years in March since this fourth pneumonia and I’ve had something Long Covid like after each one. Recovery took 2 months in 2003, 2 months in 2012 and 6 months off in 2014 and then an ongoing mild chronic fatigue, so I worked about half of a regular family medicine schedule. I saw 7-10 people per day instead of 16-22. I was also a single parent running a business with two children, so that has a lot of energy draw as well.

On the second morning there, my pulse was 61 and oxygen level 98% on room air. HOORAY! I am back to baseline from 2014. Since it took 2 years to recover, I really do not want to do this again. No more pneumonia. I have had two more rounds of Covid, but apparently the super high antibody level made it really really mild. An immunologist tested the antibodies since I keep getting pneumonia. He said I have the highest Covid antibody level he’s ever seen. Protective was over 50 and mine was 25,000. I seem to be darn good at making antibodies.

Now what? I have felt better for the last month. I still get tired and have about a half day of the energy level from my 20s or 30s, which was high. I am hiking, up to 6 miles in a day twice two weeks ago. Now to start biking and maybe running. I don’t like to run but it’s good training. I want to ski next winter at least one day. Maybe I will swim too. I used to swim a mile twice a week, but it’s been a long time. Also my swim team daughter expressed scorn for my freestyle stroke. Sigh, children are born to humble us, which sucks.

I am still trying to see if I can work with Long Covid patients. I have rather too much experience with something very like it. But I think I would like to enjoy feeling well for a month or two, first!

Hooray! I hope other Long Covid folks are working their way out of the woods too.

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Sailing with my father

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?

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Love sorrow

Love sorrow

There are a lot of people that I love

that don’t love me. The family that

believed my sister’s stories, about me,

my father, and her daughter’s father.

My sister died ten years ago.

I wait a decade, trying to repair it,

and now I give up. I do not want to

see them again, any of them, though

I still send them love. They may not

have my presence, after a decade of

cruelty or indifference.

Work, too. I am labeled malingerer

twenty years ago, after influenza.

“I don’t understand how you could be

out for two months from flu. I could understand

a heart attack or cancer, but not flu.”

Do you understand it now? I had

Long Covid before Long Covid existed,

after pneumonias: influenza, strep A

strep A and then Covid. Each time it

takes longer to recover. After the third round

and a year, I know that I have chronic fatigue.

I don’t bother my doctor as I am a doctor

and I know we have no cure. I can work

half time, see half the number that we are

supposed to see daily. I work anyhow.

The money ends almost meet. After a decade,

Covid closes me down. I go to work for The Man,

suspecting I’ll get pneumonia. I walk in rooms

to patients with their masks off. I react

with PTSD each time but take care of them

anyway. It only takes five weeks to get

Covid. I am on oxygen for a year and a half,

chronic fatigue magnified. How did I not get

it in my clinic? I masked everyone with a cough

or cold from 2014 on. My patients were USED

to masks and I masked too.

I am on oxygen and suddenly the doctors

who thought I lied, are pleasant and stop to

talk to me, while I think cynically, you’ve

disbelieved me and spread rumors about me

for 20 years. Do you think I forgive you now?

And one who said he’d be my friend forever

no matter what. And also said that when people

go over his invisible line, he never speaks

to them again. I think, oh, that will be me,

this is a set up. It is. But Beloved, Universe,

Earth, Sun, and Moon

why do I love them all anyway?

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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.

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Hopes rise

Our Christmas plans are busily crashing and burning. I felt ill and tested covid positive two days before my daughter was due from her city. ALERT, ALERT, DIVERT! I called friends who agreed to pick her up at the airport and let her stay for the five days of isolation. I stay out of the car so the germs will die. I call her after her work on Friday. She takes it calmly and calls a friend to pick her up. I miss her, darn it, but well, I am not on a ventilator or dead. Doing well, right?

She stays with her friend. She plans to join me yesterday but then snow. School is canceled. She and her friend sensibly leave my car at the entrance to the ridge road the friend lives on. She has to use the chains anyhow because someone has slithered off the road right in front of my car. Still grateful, because they did not hit my car.

She makes it to my house, chains on. She heads downtown to Christmas shop but the store she wants is closed. I ordered her a present that needs to be picked up, but the pick up is Tuesday to Saturday. They don’t list a phone. I ordered it on Sunday and they had emailed “Pick up now” even though it’s not “open” on Sunday. I email back, “Can’t, covid!” Now I email again and say would they contact my daughter or me so she can pick up. They do, but well after she is home. Still grateful, because they are open today. Maybe we’ll get it!

My daughter has been looking forward to time with friends but the snow has screwed this up. Maybe to time with mom, too, but mom has Covid. I am eating upstairs, she is eating in the basement, and same with sleeping. We are both masking and everyone is sick of that. It’s cold outside and the band she wants to dance to cancels. She misses meeting a friend downtown because of chains and needing gasoline. I am still grateful. Not dead yet, right?

Now I have email from our flight saying, well, maybe we’ll go. We are supposed to fly later this week. It looks like the big storm will hit Chicago and Buffalo and Boston. Cross fingers as we head for Dulles. Might make it. We discuss going to Sea-Tac a day early but that would mean sleeping in the same hotel room and no, we aren’t going to do that. Friends say they CAN get us to the airport. Super grateful for those friends!

When things are going all awry and life seems like rather a mess, we do Happy Things. That is a check in at the end of the day where we list three Happy Things each. My son was having a miserable half way through the year first grade move when we started this. The thing is, they do not have to be VERY happy. They can be more along the lines of “No one has poured boiling oil over me today.” or “Not dead yet.” It’s complaining reframed and it can be very very funny. In first grade one of his Happy Things was “We did not have the pizza that tastes like cardboard for school lunch today.”

So my Happy Things yesterday were: “I am not on a ventilator! I am not dead! We have super nice friends who will take us two hours to the airport!” If you start low enough on the Happy Things scale, there is no where to go but up.

And a Happy Thing for today: “I think the sun will rise!”

Happy Solstice.

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The photograph is Emerald, one of the Anna’s Hummingbirds, all fluffed up in the cold and guarding her feeder. There is a bird photobombing the background. I think it is a song sparrow but it was very early and the light is not great.

For the Ragtag Daily Prompt: rise.