Inconvenience Fee

I started the day today with a telemedicine appointment with a pulmonologist with the Post Covid Recovery Program at Rutgers. He prescribed a new inhaler that might improve my asthma symptoms. On the neurological stuff, he had no suggestions beyond what I am already taking.

Current research, he said, suggests it’s a mitochondrial disease: the body can take in oxygen, but doesn’t use it the way it’s supposed to. I’ve been following covid news, natch, and had seen a report about this, but he explained it helpfully.

He was a nice guy. He understood what I am experiencing, and what my job entails and why I can’t do it. He was kind. I wanted to cry, just from being seen. He couldn’t access a bunch of my medical record, because it’s in various different systems used by different doctors in different practices. “American exceptionalism,” he said, completely dead-pan.

He said most people with long covid get better after two and a half or three years.

TWO AND A HALF OR THREE YEARS.

It’s been eight months.

I went off to CVS and picked up the new inhaler.

I went to my GP’s office and dropped off a form for her to explain why I am unfit for jury duty. I had to print it out from the county website and fill out parts of it. Once she’s had time to fill it out, I have to go back to the office and pick it up. Then I have to mail it to the jury duty administrator. I am supposed to return it within five business days.

I went to the police station. Climbed down a double set of stairs, rang the bell, told them what I need, waited (standing) while they decided if they were going to let me in, pulled open a heavy door, wrote a check for four (4, FOUR!) dollars, and stood at the little window while the person on the other side processed the form, filed my check, filled out the temporary handicap parking tag, and punched out the month and year.

And climbed back up the double set of stairs and drove home, exhausted. 

Renewable online: driver’s license and car registration. But not the handicap hang tag. For today, I am done for.

I am on the couch with Stella, listening to music. Maybe I’ll read a little more of my current mystery novel. I’ve been binge reading Joyce Lionarons’s Matthew Cordwainer series,  and having finished, I started over at the beginning. 

I don’t usually nap, but it’s not impossible. Unlikely though, given the combination of rage, frustration, and fear that I live with all the time these days.

Oh, and on the “memo” line on the check, I wrote “inconvenience fee.”

Nope, Can’t Do It All

I can’t do it all. I can’t even do most of it. I am trying so hard to figure out how to make that work. 

The Atlantic’s long covid coverage is really good; a key observation for me was that people who are depressed don’t want to do anything, but people with chronic fatigue have a whole long list. It’s not that I’m too depressed to do things. I am sad because I can’t.

My brain doesn’t want to hold on to anything, so I’ve outsourced short-term memory and scheduling to my phone. I keep rearranging the lists to make more of the things happen, but it’s not working. Naaatch.

“No social media before breakfast” keeps me from doomscrolling. But writing is the easiest way for me to communicate, and the socials keep me connected with friends and family. Not to mention the news.

Actually seeing friends, on the other hand, is … really hard. I have trouble coming up with words and shaping sentences. Listening is even harder. I’m working so hard to remember what someone is saying that I miss the next thing, or I’ve forgotten some crucial part and I can’t understand what comes next. Group conversations? Forget it. 

When I write, I can go back and edit. I can google* to try to find a word. And man, I have been giving google a workout.

Exercise makes me feel better, as long as I do it carefully, with plenty of rest after every set. This means that a weight workout takes an hour and a half. Before Covid Me alternated arms and legs and finished in 20 minutes. 

Yoga also make me feel better, because that bike crash (the bad one, in 2017) left me with a damaged spine and hip, and pain that makes it hard to get out of bed in the morning. 

Walking Stella is good for me physically, though it tires me, and having her in the house keeps the deep dark black pit a lot farther away.

All the balance exercises, eye exercises, smell training, music, meds, and supplements are supposed to heal my brain. But if I did them all every day, I would have no time left to rest. If I don’t rest, I crash. If I crash, it takes anywhere from days to weeks before I recover. 

Plus, you know, I just got married, and I’d REALLY like to be a half-decent wife and at least clean the kitchen after Catherine makes us fabulous meals, maybe do some laundry, keep the place a little tidy.

So I’m at a loss. 

My newest strategy: A little is better than none. Just one eye and balance exercise every day, instead of all ten or so, mornings and evenings. A set of squats, a couple stretches. 

That might leave me time for half an hour of email triage and 45 minutes of academic writing, which is all I have the energy for anyway. Somehow, I have to find a way to be okay with that, and try to avoid asking the universe if this is going to be the rest of my life.

Any ideas? Do let me know.

__________

* Actually I have switched to Ecosia, which promises not to sell my data and to plant trees every time I use their browser. Because yeah, I AM still a tree-hugger.

Everything is Harder, the Tuesday Edition

Is it Tuesday? No, I think it’s Wednesday. But I haven’t gotten to the one thing I wanted to do yesterday, and I’m all out of energy again.

I think this scene in the saga starts on Sunday, when we got three inches of water in 20 minutes and spent then next hour running around trying to keep our garage from flooding. 

Is it Wednesday? Yes, it’s Wednesday. And I’m still tired.

This morning I sent a couple of emails to members of a couple of committees I’m on saying I’m probably going to have to resign, and do they want me to resign now or wait until the end of the cycle. Writing is easier than talking, but I’m still worn out by the time I find all the email addresses and send both messages. In addition to the cognitive issues, it’s emotionally hard to send these messages, because the committees do important work, and I want to be able to contribute.

Then I talk through the portal to the provider for one of my medications. Talking is hard to begin with, but talking with dropouts because the wifi signal is weak (my end or hers? I’ll never know) is even harder.

I look at social media. Why does that always turn out to be a mistake? Someone has posted an FYI: CVS has the new covid vax! I want it as soon as possible, because there is anecdotal evidence that getting revaccinated can help with long covid, and I don’t want to get covid again.

I call the local CVS. The recorded message says they have the vaccine in stock. I try to get through to a human, to see if this is really true, but fail, because that’s the way the world is designed right now, because why let a human do a job you can farm out to AI? Shitty AI, if you want my opinion.

I run off to CVS. They don’t have the vaccine. I tell them the recorded message says they do. They know. I try to explain that I don’t have energy to run around like this, because I have very little energy, and misinformation is actually harmful to me. Do they get it? I don’t know if they get it. Talking is hard. Talking when I am already tired.

Then I have to drive to the doctor’s office to pick up the papers for the disability application. At school, Catherine comes out to meet me at the car to take them to HR.

Home. Lunch. Crash.

Meds, Cognition, and Time

I think I have finally found a way to manage all the meds that doesn’t take a ton of cognitive energy, which I have so little of, all day.

Between all the medications and supplements, there are sixteen pills. Then there are the two inhalers, one  I snort up my nose, one that gets added to food, and one that has to be dissolved in liquid. It usually goes in my morning coffee and—thankfully—has no taste or texture.

I have to remember to take two as soon as I wake up. There’s a hefty handful each with breakfast and lunch, and few more at dinner and at bedtime. 

I’ve had reflux for years, and meds have never helped it, so for a long time I’ve had to be careful what I eat, and when. Adding all these pills to the mix was a process of trial and error to make sure anything that might bother my stomach goes in relatively early in the day and with food. Rolaids and occasionally Pepcid come in if I screw up.

Sometimes I dread eating breakfast because I know it means I have to choke down six more pills.

Before Covid (BC?), I had a hard time keeping track when I all I had to take antibiotics four times a day. Organizing and remembering all of the stuff I’m on now, mostly for brain and lung damage, for which it provides some welcome relief but not nearly enough, has been pretty overwhelming, and it has taken me many weeks to find a system. And remembering if I took a pill or used an inhaler? Yeah, right.

After much searching, I found a pill organizer that is actually big enough for the breakfast and lunch doses. Bonus: the daily inserts come out of the organizer, which makes them so much easier to fill and empty than the kind where everything is connected.

And I’ve finally figured out how to use the iPhone “tasks” app effectively. I’ve divided up the day into two-hour intervals and I can check everything off when I do it, and then uncheck at the end of the day to be ready for the next day.

But, you know, I’m supposed to be finished with breakfast and all the morning meds (plus three full glasses of water) by 10 am. I just took the morning meds and I’m still working on the third glass of water and I’m an hour and a half late. I am trying to give myself the grace not to stress about that.

Covid Brain Damage

Covid damaged my brain. “Brain fog” is too vague a term. It also implies something on par with jet lag. I have lost some kinds of cognitive ability, but not others. Writing this post is documentation as well as part of the process of figuring it out.

My short-term memory is shot and my medium-term memory isn’t so great either. I’ve always been the classic absent-minded professor, and I’ve developed mechanisms to cope: writing things down, creating alarms for myself, leaving notes around. I have a list of my lists, to make sure I won’t forget they exist. All of this memory management, plus more impaired memory, slows me down a lot more than it used to. 

But words. Words are hard. I have trouble remembering their meanings and I have trouble finding them.

I can’t keep up when people are talking, I guess because my brain is so slow. I get confused, and then I get lost in the conversation. Weirdly, I come up with the first letter of a word, and then stutter while I try to get the rest. Or I find the word, but in the wrong language. So social interactions are exhausting. 

Reading is harder than it used to be. Reading! My mother taught me to read when she was pregnant with my brother so I could occupy myself. I was so young I can’t remember not being able to read. I was the classic bookworm, always with my head in a book. More than that. My mom called me the “reading monster.” 

Word recall makes writing harder. Google is great for finding synonyms and even helpful if I can only describe the concept I am trying to name. But it’s also hard for me to organize ideas, at sentence level as well as in paragraphs and longer texts. All of this is tiring: I’m good for maybe an hour. Writing this post is wearing me out.

(On the other hand, my ability to do KenKen hasn’t changed. I had a lot of fun with the now defunct Digits puzzle, and I’ve gone back to Nerdle, which I’m actually finding easier than before. Arithmetic, logic, strategy. Wherever those things are stored in my brain, it’s unaffected.)

This all matters because I can’t do my job. Any of my jobs. 

There is no way I could teach a class, and manage the interplay of lecture segments, student activities,  discussion, and questions, while keeping track of all the students to make sure no one is lost, distracted, or tuned out. 

And then there’s grading. Why grading is hard when teaching literature, where there are a lot of different “right” answers yet also some wrong answers, is a whole other blog post.

I was on sabbatical when I got Covid, and I had a lot of editing and writing balls in the air, and I almost immediately dropped them all. Some of them have been picked up by other people. I have some very, very patient editors. Even staying on top of email is … well, impossible.

I am doing better than I was during the immediate post-covid weeks. Physical therapy and occupational therapy helped some, medications are helping some, fancy new glasses made a difference (and I am getting fine-tuned ones next week). I have a new list of medical professionals to set up meetings with, based on recommendations from my cousin the psychiatrist and the fancy eye doctor.

But progress has stalled. And I don’t know if or when it might get unstalled. Stay tuned, I guess?

We Need To Find A Way To Ban Plane Advertising

Advertising planes fly over the beach seven days a week in my neighborhood. I am three-quarters of a mile away from the beach. I have been spending a lot of time outdoors resting, when not treed indoors by global boiling or poor air quality.

Even at my distance from the beach, I usually see two or three advertising planes a day, even on weekdays, and more on weekends.

The most common small plane, according to the Intertubes, is the Cessna 172, which seems to require around 8 gallons of gas an hour.

My Honda Fit gets 33 mpg driving around on suburban streets, 40+ on highways. Let’s call it an average of 35 mpg. 

Let’s say they’re out there flying for six hours a day: that’s 48 gallons per flight. If that’s a good guess, then one of those planes burns as much gas in under a week as my car does in a year.

One part of me reacts to this by thinking there’s no point in worrying about my own carbon footprint when this is going on. 

Another part of me wants to figure out what businesses are flying the planes (the signs face the beach, not my backyard) and write to them all to tell them how I feel about this.

Another part wants to write to Governor Murray and Vin Gopal and suggest that they make this kind of advertising illegal.

And then there’s the part of me that’s feels like all of this is too much, because Long COVID. 

But I will, I hope, revise this post into a letter to write to some of my elected officials, and I hope you’ll feel free steal whatever is useful and do the same.

If you do, please let me know. Thank you!

Pacing and Recovery

You have to pace yourself, the doctors tell me, the occupational therapist tells me, the physical therapist tells me.

Learning to pace myself, it turns out, is a constantly evolving challenge.

I’ve started recovering physical strength, with the help of PT, and I’m able to handle daily life stuff withouth getting out of breath. Taking a shower, unloading the dishwasher, running a couple of loads of laundry. I can even manage some of the medical scheduling on my own — Catherine was doing all of this for me for a couple of months. 

I walk Stella. Or does Stella walk me? A month ago, we left the house and walked to the end of the block and back. Now we go around the neighborhood park, a little more than half a mile. We stop a lot so she can sniff things: she paces me.

Last week, I went for my first two bike rides since before COVID, and started lifting again, with the encouragement of the physical therapist. And with a long list of limits and precautions. I saw several deer and a couple of turtles in the park, and I worked up a couple sweats, and it felt great.

I also went to the Apple Store last week because my phone battery was draining itself, and two hours later, I was exhausted, and I’m still not exactly sure why. A combination, I think, of social interaction, overstimulation from all that was going on, and just not being able to rest when I started to flag.

It took me four days to recover.

I have so much trouble with words, mostly finding them, occasionally understanding them. Writing emails is a cognitive challenge. Working on revisions to that overdue book chapter that is is a much bigger challenge. I read a novel a few days ago for the first time since before Covid. I picked it because it was short. I took a lot of breaks.

After I hit “publish” on this post, I’ll go lie back down on the couch.

Yesterday, I went to the beach for the first time this summer. It, too, was exhausting, physically rather than cognitively. I swam only where there were almost no waves, and even that was challenging. Being in the water made it hard to breathe, something that’s never happened before. There was a lot of walking.

I am flattened today. Today, I struggle to go up and down the stairs to the basement. I napped this afternoon, something I haven’t needed to do for a few weeks. 

How long will it take to recover?

Portals, Websites, and Apps

We really need a single nationwide system of storing health care data. Every doctor I’ve been to in the past three months has a different way of entering and storing data. I have to enter my whole medical history, including medications and allergies, on another form or in another portal. 

It’s a mistake waiting to happen. Especially with brain fog.

And then there’s a different way for each doctor that I have to remember in order to reach the doctor to make or change appointments or to access the results of tests. They still have phone numbers, but many of them are unreachable in practice: I tried for two hours to get through to an office the other day before I gave up.

I mean yeah, what we REALLY need is single payer insurance, where the medical system is organized around health care, and not around profit.

And I’m not going to say that I’m “lucky” I have health insurance, because in the rest of the developed world, that’s a given, the costs are significantly lower, and the list of things that aren’t covered is a lot shorter.

Brain fog

I was already frazzled when I was trying to drive to the occupational therapy appointment the other day, and I did not know that Kessler Rehab has something like a dozen locations in Monmouth County, and I plugged the address into the phone and started driving. 

I drove right past the cardiology office I’d been to the day before, so the route was familiar. It didn’t seem quite right, but covid brain fog, so I figured I was remembering wrong. But I arrived at the address and realized I was in the wrong place: it did not look at all familiar.

I called them, and then told me I was in the wrong location. I was already running late, so I entered Kessler in google maps again and started driving again and then realized the map was taking me to a different wrong Kessler location.

I pulled into a gas station, slowed down, tried to breathe like the occupational therapist is always telling me, found the RIGHT location, pulled a uey, and drove some more. I was half an hour late when I finally arrived.

“Give yourself some grace,” Allizey said, ever so gently. 

COVID Brain Fog

 I have a helluva time with words. I used to get to “amazing” or “genius” in The NY Times Spelling Bee first thing in the morning. Now I look at it and I can’t see words and I just string plausible sequences of letters together. 

I worked my way through several hours of Pimsleur’s Greek lessons some years ago. I am repeating them, because it’s not reading, but I routinely fall asleep. Is the effort or the boredom? 

But I am fine with numbers. I can remember a two-factor authentication code with no problem. I fly through the Times “digits” game and I can do a 9x9 expert Kenken without hints about half the time. 

Writing? Even just a email, or a blog post like this: Very, very hard. Reading with sustained attention, impossible. I am hoping the fancy new glasses change that.

Covid Diary

I have been wanting to write about what it’s like with long COVID, but I don’t have much energy to be on the computer. I don’t really know where to start so I guess I’ll start at the beginning.

In January, I was in great shape. I was living in Germany without a car, so grocery shopping, weekend sightseeing, and all my day-to-day activities were done by bike, by train, and/or on foot. 

In February, after returning from Germany, I went to an academic conference that I traveled to by bike, train, and bike, with luggage. I was one of few people at the conference who masked, and the day after I got home, the symptoms began. I was sicker than I’ve ever been, despite numerous bouts of walking pneumonia and bronchitis that exacerbated my underlying asthma.

I recovered from the acute infection after about three weeks, and the weird symptoms began. My vision is wonky, I get short of breath on climbing a flight of stairs or unloading the dishwasher, my feet often feel like they are on fire. My brain is deeply foggy. Working at the computer wears me out, whether it’s writing email, watching videos, or trying to have a zoom call. Reading? Sewing? My vision goes even wonkier.

The GP said take this new medication. The insurance company said “no.” 

The pulmonologist said “rest.” For six months to a year. 

The occupational therapist sent me to a fancy eye doctor who prescribed fancy expensive glasses that I am hoping to pick up soon. Maybe they will help with the fatigue, with writing and reading.

The physical therapist sent me to a cardiologist who prescribed a bunch of tests and said, get some exercise. The insurance company said, in a recorded message, “no” to I think one of the tests. Maybe more. Like I said, brain fog. I didn’t know the message was going to be recorded and I didn’t write anything down and it was not repeated and I hung up and wondered what just hit me.

I am still waiting to see the neurologist. I was “lucky” to get an appointment in the middle of June, after my GP referred me in March.

And that’s it for today. I am worn out. Maybe more another day.

Climate Action Resources: A List

Environmental action and Jews

The Big Bold Jewish Climate Fest 
Religious Action Center of Reform Judaism
The Ten Plagues of Climate Change 
Zavit, Science and Environment in Israel 
Adamah: People, Planet, Purpose 
Dayenu: A Jewish Call to Climate Action
Yale Climate Connections: Judaism and Climate Change

Carbon footprint 

Quick and easy carbon footprint calculator

More complicated carbon footprint calculator

Center for Sustainable Systems Carbon footprint factsheet, University of Michigan
Climate Feedback

General Environmental News

Green America

Mother Earth News

Earth Talk

Treehugger: Sustainability for All

Environmental Health News

Political Action

Climate Action Center 
Union of Concerned Scientists 
Citizens Climate Lobby 
Extinction Rebellion 
Climate Action Network 
Environmental Defense Fund
Climate Action
Pay Up Climate Polluters
Climate Action Tracker 

Environmental Justice

Climate Justice Alliance

EarthJustice

Environmental Health News

 

Science and Solutions

Project Drawdown

Project Regeneration

Introduction to Climate Science, University of Oregon
Science Daily Environment News 

Our World in Data 

Global Carbon Atlas 

Surging Seas 

Productive Conversations

Katharine Hayhoe, TED Talk, “The Most Important Thing We Can Do About Climate Change” 

Katharine Hayhoe, Frequently Asked Questions 

Yale Climate Communication project 

United Nations Climate Action

United Nations Communicating on Climate Change

George Mason University Center for Climate Change Communication

Christianity Today: Changing the Conversation on Climate Change

Native plants

National Wildlife Foundation Native Plant Finder

New Jersey Fish & Wildlife, Backyard Habitats 

New Jersey Native Plants and Pollinators 

Sickles Market, Little Silver

Brock Farms, Freehold

Rare Find Nursery, Jackson

Izel Native Plants 

Go Native Trees 

New Jersey Yards: Landscaping for a Healthy Environment

Better Banking

Banking on Chaos: banks that fund fossil fuels 

And some that don't 

Climate Action 100+