Decision-making as an immunosuppressed person during a pandemic

When the pandemic began we knew very little. We didn’t know how dangerous any given thing was; if, for example, touching shared surfaces was more of a risk than shared airspace.

It was safe to assume that immunosuppression created more risk of negative outcomes if I became infected with the virus—severe symptoms, hospitalization, death—and possibly also created more risk of infection if exposed.

In that situation, my logical choice was lockdown. Go out as little as possible, and wearing a mask when I did so (even before they were required), follow the hand washing rules rigorously, and wash or disinfect items coming into the house which may have been coughed or sneezed on at some point. Make a pod with only two other people, who were very careful about masks and hand washing and physical distance with those outside our pod.

Soon there was scientific data on the virus’ survival on surfaces which added isolation as an option to washing/disinfecting incoming items and I was able to set up boxes by the front door to allow things to sit for three days.

At various points as time went by new information came in—”yes, it’s transmitted through the air, and everyone should mask”, “yes, immunosuppressed people have substantially worse outcomes so really really avoid getting it”, “actually surfaces are only a short-term risk so you can just isolate for 8-24 hours and wash your hands after to feel particularly safe”, “N95 masks really really help, so get good ones and learn how to fit them properly”, “well, actually surfaces are even safer than we thought, so just wash hands after touching stuff”.

The vaccination became available to some people and that, plus continuing study, brought new data after a while—”vaccinated people are a LOT less likely to get infected if exposed, though not a sure thing, so still wear a mask around people other than your ‘pod'”, “outdoors makes an enormous difference, so you can go for a masked walk with your friends or socialize outside in masks”.

I remained cautious, knowing that my situation was less studied and not represented in the general instructions.

I got the Pfizer vaccine on the first day I was eligible and that lowered my stress though it didn’t change my habits. I felt even better after shot #2 because by then we had data that even people with pre-existing conditions who might not get full protection from the vaccines were experiencing reduced rates of hospitalization and death. But I didn’t change my habits. The “one wrong step could kill you” feeling began to dissipate, even as awareness grew of what a crappy thing COVID-19 is and how much I didn’t want Long COVID.

There wasn’t and still isn’t a way to directly measure protection and to see how well the vaccine did in my body. But there was correlation between protection and spike protein antibodies. So as soon as I could get a test for those, I did.

It was negative.

Not only was I not a ‘fully vaccinated person’ in CDC terms, I didn’t even have a number that let me consider myself anything above 0% vaccinated with regard to my risk of infection.

In all of that information void, I turned to probability to help me decide what to do and what not to do. I used the microCOVID.org Calculator and then moved on to create a microCOVID.org Risk Tracker spreadsheet for myself and to have my two pod-mates make one for their ‘fully vaccinated’ selves (with a different weekly risk budget than my very very conservative one).

This has been enormously helpful in my making informed decisions as I have navigated through the unknown. Those decisions use statistical risk to make safety choices about how much I can socialize with my friends or go out in the world. Having good information and methodology for those decisions helped enormously and contributed to my experiencing less stress around this than the very very very high stress levels I’d had before.

But they haven’t solved my problem: I want to see my friends more than my risk budget allows for getting together with estimated ‘vaccinated person who is sometimes working to the edge of a reasonable risk limit of their own’.

Unless I convince all my friends to track all their activities in their own Risk Tracker—instead of just following the broad CDC and San Francisco city guidelines around mask wearing—and have real week-to-week risk-to-others numbers based on what they’ve been doing, I need to use a stand-in estimated person that’s not overconfident. And that caution burns up my 21 microCOVID’s a week budget very fast now that the COVID rate is rising again.

Adding to this is confirmation that people on my medication often do not get a full response from the vaccines, and that sometimes getting additional vaccinations helps, but not in my case. At least not so far with J&J not doing it for me and my quantitative spike protein antibody test two weeks after Moderna shot #1 still showing negative.

I’m hitting the limit of what will work for me in terms of making my social safety decisions based on statistical probability.

It’s time to switch to a model more like safe sex: a current test showing you don’t have it. And the great part is, there are easy, painless, rapid tests which only take 15 minutes. It’s an expense, but it’s one that seems well worth it for my mental health.

I think it’s gonna be easier to talk my vaccinated friends into sitting on the back porch swabbing their noses before they come inside unmasked than it would have been to convince them to maintain a spreadsheet. 😄

The essential first step to deciding to adopt this approach is to confirm how accurate those tests are and how that compares to the risk level I feel comfortable with.

Based on the interim results of a clinical study where the BinaxNOW™ COVID-19 Antigen Self Test was compared to an FDA authorized high sensitivity SARS-CoV-2 test, BinaxNOW COVID-19 Antigen Self Test correctly identified 84.6% of positive specimens and 98.5% of negative specimens.

[source]

Currently the rate of COVID cases among vaccinated people in San Francisco is about 5.8 per 100K [source]. In microCOVID terms that’s about a 58 microCOVID “expense” to be around a vaccinated San Franciscan who has no symptoms and with no other information.

If BinaxNow has a false negative rate of 15.4%, now that “expense” becomes a 9 microCOVID risk they’re actually positive. A 9 in a million chance they have COVID right now.

The chance that they would transmit to me in that case are even lower, because there’s the ‘partner attack rate’ to consider in exposure in general, but also because being less infectious would correlate with being more likely to appear negative on the BinaxNOW test.

So, I can keep using my microCOVID.org Risk Tracker in general, but for in-person activities where I’m testing people before we’re unmasked together, I should probably estimate it as an activity that costs me 1 microCOVID per person per hour. (That is based on a 14% chance per hour of of getting COVID based on microCOVID.org’s updated estimates plus some downward adjustment for reduced infectiousness.) And where people have a known risk that comes out better, I can log them on a separate line in my Risk Tracker spreadsheet and reduce my “expense” even more.

This still means that getting together with 3 friends to play boardgames or a role-playing game for 3 hours is about a third to half my weekly risk budget right now, but that is often worth it to me!

(Thanks, Joe, for helping me think through the probabilities!)

Staying Flexible

Definitely facing the challenge of life on medication. I had a dosage increase of my immunosuppressant which left me feeling fatigued and unfocused. My doctor and I were able to figure out a smaller increase that should still help, but my body is still weathering the change. A bit better on energy and ability to do good writing and thinking yesterday and today, but I’ve made little headway on the Kabalor rules this week. Frustrating to have that come right after a very good playtest of the first part of character creation, but I have my notes and will continue to plug away when my creative and energetic stars align.

Fortunately very quickly after the dosage readjustment I got more physical energy back and could do less-intellectual exercises. Caught up on housework and laundry. Even washed a couple windows! And, on the even brighter side, my second HobbyZone order arrived and I’ve been able to plod away at the slow work of assembling these lovely craft organizers.

In July of 2020, realizing what a long journey through the pandemic it was going to be, I spent $135 to get my first seven pieces: three cubbies, two bottle shelves, a brush/tool holder, and a paper towel dispenser.

July 2020: Cubbies on the bottom, bottles and brushes in the middle, paper towels on the right, and a fancy wooden box (from a bottle of Chartreuse Joe got) acting as a bonus cubby. 😄

When I got my basically negative result for COVID antibodies (after vaccine shots, whee immunosuppressants work 😬) and was faced with further hurdles to returning to normal activities away from home, I treated myself to an expansion. Nine pieces this time ($222): four more cubbies, three 2-drawer units, and two 3-drawer units.

Here’s where I’ve gotten to so far in the setup. Much slower going when drawers are involved since they’re each not that much less work than building the piece they fit in.

So much more storage—and there are two more pieces to add in to the top left between the tissue box and the paint racks.

Plan is for work in progress to live in the two-drawer units right in front, with large pieces in the leftmost cubby or up on top, and stuff I will grab as I work in the second cubby. That’ll free up that part of the desk to be my main work surface again, which will free the long arm of my L shaped worktable (out of sight off the bottom of this picture) to be usable for other projects. Not having to choose between having a terrain painting table or being able to bring out my sewing machine for a quick job will be fantastic.

So, it’s been the smell of MDF and wood glue around here, which smells like…creativity.

A lovely gif (from Chowhound, iirc, or was it Eater? Gone from their site last I looked anyhow) of Michelle Polzine of 20th Century Cafe making a honey cake.

Focus on the good things, and appreciate them while you’ve got them. I’ve felt good about my adaptation to having multiple types of projects to support my selfcare. If all else is too much, I can do a Headspace meditation and feel I’ve helped my healing.

20th Century Cafe will be closing, and as I said to Michelle, it’s been a great show and I’m glad I got to see so many performances. Just like a great play, it can close and still have been a success. Gonna miss those pastries tho’. And the Reuben sandwiches!

Time marches on. Here we are into May and the year is 2021. We’re most of us feeling the damage. A hard set of years for us all, especially so for me with tough events here at home. My biodad died in 2016, I got my rare disease diagnosis in 2017, and went on heavy meds in January 2018. Further life changes in the intervening years made the generally alarming prior administration and the specifically terrifying pandemic even more of a burden. But with 2021 I have emerged from the wreckage. Not free from challenges, but more fully myself and more determined to make the most of the time and energy I have.

Overall, I really am doing better this year than I have since, uh, the Obama administration? oof. What a long strange trip it’s been. But it sure helped set my priorities! More play, more time with friends, more games, more caring, more joy.

As is my custom now, part of reflecting on the present is putting away some of the past. Looking at old pictures and seeing the long path that brought me here.

Here’s me and my cousin hanging out on the original deck of the house I grew up in. My parents (largely my mother to the degree that I still associate the sound of a radial arm saw and the smell of sawdust with her) would go on to cover many more areas with good decking around the house. I’m sitting in that boneless way of kids and cats, with one foot on the ground and the inner side of the other foot resting flat against the bench I’m sitting on, knee sticking out in front of me. No more short Easter dresses and baggy tights; I’ve got long pants, sneakers and a long-sleeved turtleneck. Ready to run and play. It being the era it was, the pants are a light plaid and the turtleneck is red.

We are with my mother’s… well, what? Foster sister? Whatever the term is for a goddaughter of your parents? Odd that I don’t remember this. Younger than her. Maybe didn’t live with my grandparents until after my mother was at college? An immigrant… or refugee?… from… somewhere in Asia, broadly? Why has this family history completely evaporated from my mind? I think she was only around in my life for a few years and I was quite young, but it is odd to have this void of memory. I remember someone full of energy. Big smiles and excitement.

She’s doing that thing that is always shocking/exciting/dubious to a little kid: acting like a kid. Feet safely on the floor so as not to damage it, she rides the spring-suspended rocking horse. A thrilling toy, from which an actual kid could take a mighty tumble. Pretty sure my cousin or I managed to upend the thing at some point rocking too hard. Tears and wailing. A bump on the head.

The house is new to my family here. I think we were only there a month. It’s a pale color, like an unpainted model. In another picture of the same visit, my cousin and I smile on the front porch. We sit on the big cement bottom step, our toddler legs just the length to use it as a comfortable bench. Behind us is wall where the new front door would get put in years later. An overexposure blur at the left of the picture says “This is film. This is the past. Technology has changed. Most things have changed.”

My cousin grins in excitement. I hold myself more cautiously. Another picture, my cousin looks to me, connecting. I hold something up to the photographer. A little card or something? I present information. She is relaxed, easy, and free in her body language. I am composed, contained, doing things correctly. Some things have perhaps not changed so much.

The last of these pictures, my cousin rides the horse. I stand watching. I appear to be eating a snack. My mother watches me affectionately and she is astonishing. Dressed in a short tunic with a white rope belt and with a shaggy bob haircut, she is like a French film star crossed with a Franciscan monk. Legs and charming features and modestly covered in between. Her hair was always longer in all the rest of the years of my childhood, but here she is. A free woman in a bold world, newly moved into a big house with her name on the deed.

I think of this bright young thing, only a few years out of college, and how she would bear the mantle of work and parenthood and relationship changes coming soon. A different person emerging, tougher but still fully herself. I think of another picture of her in the doorway of the house she lives in now, a house with her name on the deed, which she had a major hand in designing. In that picture she holds big rocks up by her shoulders and graying hair, off to build another rock wall in the garden. Her shirt has figures dancing and says, “Who cares who leads?”

I am drawing on all these energies now. This mostly forgotten semi-family-member with buoyant energy. This loving cousin, always more of a natural at everyday friendship than I. This free spirit my mother as she launches into the great adventure of that grand house.

We have all changed and we’re all made up of the parts we chose to keep (and some that are just sticking around, a stubborn part of our construction). Things begin and end and alter. Life goes on.

Catching up and shifting focus

No posts since November! You can really tell my attention has all been over at Kabalor.com and its associated Patreon. Many many hours of game design and quite a few spent on getting better at terrain and mini painting. Also a lot of personal growth, physical recovery and restoration after my flattening experience of Prednisone for a couple years, and continued Discardia reflecting my changing interests.

I’m feeling more myself than I’ve ever been and more connected to favorite parts of my past selves. My child and teen self would approve highly of the central place that games and play have in my life now. 🙂

One big change is having even more focused time to myself; that is, time which I am in charge of and during which I’m focused on what I want and need rather than the expectations of others (or what I think will please them). That’s improving my creative work and making it easier to trim away the old stuff.

With meds that have prevented me from drinking (except very low proof and then only rarely), cocktails have dropped off my list of hobbies and writing interests. I am still deeply Discardian in nature, but realized I don’t want to be a self-help guru and so, for now at least, updating my book Discardia: More Life, Less Stuff has dropped off my projects list.

Becoming a person with a chronic health condition has sharpened my focus. It’s probable that I will not live as long as my grandmother and her father (something which in the past I’d strongly hoped for) and so I’m looking at fewer than 40 more years, possibly substantially less, but maybe not. Suppose it was half that? What would I want to have spent that time doing? Synthesizing my lifetime of learning and play into an original roleplaying game feels like something which is deeply enjoyable, emotionally satisfying, and a gift to the world (or at least my friends). If life is going to be harder and shorter than I expected, then I will choose to spend it on more fun and kindness and laughter and love.

This focus, this commitment to bring myself joy and share it with others, is making it easier to look at past things and say, “Awww, yes. That was nice.” and then put them away, perhaps to look at later again and perhaps not. I continue to sort through my oldest papers and souvenirs and to process them. That usually results in them physically leaving my life, though often I’ll keep photos where they bring up part of my story or just make me laugh.

As my terrain and minis hobby grows, my present bumps up against my stored past and the stored turns to story only, freeing space for me now and my future.

So, too, with my online presence. I am not as precious about my posterity as I once was. For my own offboard memory, I keep old things in digital form, but it doesn’t all need to live on the web in the same way. Archiving my past out of public view keeps it from overwhelming who I am now in the online world.

Here’s a picture of me as a toddler. Hair in a long ponytail with bangs over my forehead. Sitting on a sofa somewhere—not the house I grew up in—wearing a yellow sundress and barefoot. One hand is out across the arm of the couch, against which my back rests, the other has fingers splayed as I inspect it intently. Looking at something on my forearm? Exploring how the muscles work when I stretch my fingers? It is tiny Dinah focusing on herself, discovering herself.

A few months later I received immunization shots: polio, diptheria, tetanus, pertussis. Thankful on behalf of my healthy child self. Thankful in the present for all who are getting vaccinated. We all do better when we each do better.

A picture with badly aged color, from when the house I grew up in was little modified by my parents. Still a plain, light color. No decks, no ponds or streams. And here’s toddler-chubby-cheeked little me in a red turtleneck and white and blue plaid pants. They look like a pattern reserved for pajama bottoms today, but that was a different era. There I am in my childhood domain, that great adventure space of our backyard. I smile now and I turn the page.

My earliest known song/poem, written down by mother as I was singing to myself:

I thought I planned
A magic wand,
A wand, a wand, a magic wand
But what I wanted was a dawn
But they cannot know when
Because they’re not my friends.
The little ones run from side to side
Lie down here, lie down there,
And where, where, where.
Then it is the end.
Then I said I’ll go to bed.

Glad to have this. I tuck it away.

Pictures of a child self on a path I chose not to take, in white tights and a short white dress, modeling for the camera. Posing. Being pleasing. I view her with empathetic concern. “Girl, you don’t have to do that. Be you. Be how you want to be. Be free.” And there the path I chose—and to the credit of many of the adults around me was encouraged to be on—becomes visible as I horse around trying to carry our enormous cat, Bliful. Little me, hauling up the drooping tights, annoying things. Dresses are so impractical for DOING things. I leave the poses in the past.

Next a picture of little me with a book in lap, Curious George perhaps, wearing a practical little dress my mother made in a plaid fabric and with some wild paisley pattern behind me (a giant pillow? a wall hanging? a draping over a sofa?). I have long hair, bangs, bright and intelligent eyes, and a closed-mouth expression encompassing happiness, imagination, and determination. This picture, this, is one of the past Dinah’s still present. This can stay public.

Accepting my reality and celebrating my personal style that fits it

It’s been two years since I first began experiencing symptoms of the rare autoimmune disorder I’m living with. It’s fortunately very responsive to medications and I only rarely experience symptoms now, and when I do they aren’t the worst ones. But my gums are still sensitive—I can’t eat food nearly as spicy as I used to, and I wasn’t a heat fiend by any means—and my torso basically won’t tolerate a waistband. Bras can only be of the very softest kind—we’re way beyond “no underwire” here—and its a grudging negotiation. Thank goodness for overalls.

Seriously, Carhartt saved me. I loved overalls as a kid and when, desperately trying to figure out what to do with the “no waistbands” problem in January of 2018, I finally ended up reading a clothing discussion on an IBS forum and saw “You could always wear overalls, I guess, ha ha! :D” it was a hallelujah moment. Amazingly, that was just when they were on the cusp of becoming fashionable. When I was at my most vulnerable, dealing with all kinds of discomfort and anxiety from my diagnosis, the disorders, and the medication side effects, I would go out in my Carhartts and get sincere “I LOVE your overalls!” Such a blessing at that low point.

It’s been a year and a half. I’ve weathered the body distortions of the corticosteroid Prednisone—which redistributes your fat and gives you moonface—along with having some weight gain from profound fatigue interfering with my ability to exercise.

me in July 2017, 2018, and 2019
Prednisone can radically change your appearance to the point where you start not looking like yourself to yourself in the mirror. It is deeply unsettling and compounds other possible side effects, anxiety and depression. Oh yes, and something in the mix has also changed my complexion, but that’s minor in comparison.

Now that I have tapered Prednisone down to 1mg/day, and hope in a month to be able to continue weaning my body off it, I’ve got a lot more energy, a lot fewer side effects, and a lot more confidence in taking on something like a wardrobe refresh.

Now overalls are not something that leaps to mind as the obvious thing to build a capsule wardrobe around, but I am up for the challenge. I’ll be on these medications for at least another year or two, probably more, and while I’m looking and feeling WAAAAY better (thanks!), overalls are gonna be my jam for a good long time to come.

Time to lean in and embrace overalls as the core of my style. And why not? They bring me constant compliments everywhere I go!

So, today is the start of my building a greatly pared down wardrobe. Time to let go of a lot of stuff that’s been sitting in the way, not being wearable, and find the good pieces hiding behind it that work with my current lifestyle, body, and style.

I began over the past week by reading and watching a lot about capsule wardrobes and finding your style.

Caroline Joy of un-fancy.com has some good stuff including this high-level set of notes on how to create a capsule wardrobe.

I haven’t done the full questionnaire but I’ve started thinking about a lot of the questions here in this free printable wardrobe planner also from un-fancy.com.

Use Less on YouTube has lots of great advice. Here’s the Capsule Wardrobe Guides, but also check out the other playlists.

What all this has brought me to is deciding my clothing tends to fall in 6 categories (with the last three each being used a tenth as much as any of the first three):

  • Routine (Lowkey Lapgoat* Ready)
  • Out and About (Routine out of the house)
  • Get Togethers and Shows
  • Mess Making
  • Hot & Lazy (a.k.a. tropical climate vacation)
  • Fancy Time

My day-to-day life sees me bouncing from typing at my desk to watering plants in the back yard to cleaning to meditation. I want a comfortable, practical, unfussy, friendly, relaxed, cheerful wardrobe.

My style goals are:

  1. Have a great base of would-wear-every-day items
  2. supplemented with things to dress up fancier but still feel comfortable and radiate Dinahness
  3. and built around items that encourage me to be active and creative.
  4. Keep my look well-coordinated to offset the casual comfort with color and texture poise.
  5. Keep black as one of my core colors because I look great in it.

So the first step to making that easy, is to look at what I have.

I gave myself clear space in the bedroom for the job—cleared top of the dresser and the whole surface of the bed—and pulled out and rough sorted almost everything but jackets and underwear/leggings in half an hour.

I roughly sorted things on the bed, colder weather on the left and warmer on the right, with stripes across the bed for my six categories (and my most used categories nearest the foot of the bed for easy access).

What was clear at this point was:

  • I had totally forgotten about some great stuff I already had (because it was in drawers that didn’t have daily items)
  • I have a lot of stuff that doesn’t fit and I’m only beating myself up by holding it over myself like some kind of body-conformity sword of Damocles
  • All that stuff folks say about you actually having MORE style when you work with a smaller, more carefully curated wardrobe is clearly true.

Time to pull out the rest of the clothes!

I pulled together my core colors: black, chocolate, the greens of forests and mosses, and (probably) cognac—because that’s the color my preferred medium-light weight overalls come in. (Carhartt Crawford Double Front Bib, which I get from Zappos)

New unwashed pairs of overalls bracketed by faded pairs on the top here. I don’t actually like the faded color of the cognac/caramel (“Carhartt Brown”) that much, but I needed to be able to switch it up somehow over the past year and a half.

Anyone who has been in our living room will laugh because you can find all those colors there.

Using this advice I’m going to try dyeing a few faded pairs in the washing machine. If it works, cognac/caramel becomes an accent color not a main color.

Having my main palette represented in actual garments made the next step go quickly.

I held every garment piled on the bed (except the black ones) up to see how well it went with each of my main colors. As I went I laid them out with the best matches nearest to me.

Sadly, my custom buttondowns from Kipper Clothiers (shirts 1, 2, and 4 from the front) are still too tight around the armhole to wear comfortably. Almost to the wear-them-unbuttoned point though!

It’s amazing to see so many of the greys that were the core of my wardrobe moving off center stage, but with a changed complexion and chocolate brown coming in as a new main color, they need to make room for greige.

That choice to bring chocolate brown in as a main color is surprising since I basically own nothing that color besides these overalls. But I’ve been wearing these about half the time for over a year and a half, so they’ve had a good test. 😀

I need more green and to add brown, but I’m fine on black as you can see.

So, taking stock after a couple hours work on this, I had confirmed that my sense of the categories of my clothes matched reality when I rough sorted them. Then sorting by color allowed me to direct half a dozen items or so to the charity box (e.g., some blueish-gray shirts).

I had created a prioritized (by matchiness of color) set of things to try on and make sure they actually fit.

The trying on is the most physically tiring part, so I’m set a timer for 30 minutes to see how far I got. When it went off at 10 minutes to 4pm, I chugged on through up to the hour and got through all the Main colors and all but a couple dozen pieces of those arrayed along the floor beside the bed.

My plan, after trying on those last pieces, is to take the stuff that fits from the laundry basket where it was thrown in the fitting frenzy and arrange them in the now empty drawers. I think I’ll group them by Category and within that by cold/middling/hot (we have very variable weather here in San Francisco).

This went way faster than I feared.

*It’s great to be ready for unplanned baby goats in your lap.

Why and How I Changed Paths

I was diagnosed with the mildest form of a rare autoimmune disorder in fall of 2017, the first symptoms of which had presented themselves at the end of that July. This was just over one year after my biological father had died and I’d suddenly become executor of his estate, and point person for all matters pertaining to cleaning out and selling his run-down and junk-filled little house.

I was prescribed a short dose of prednisone, a steroid which is highly effective at knocking disorders into submission, if not entirely into remission, but very hard on the body’s systems otherwise. I was a whirlwind of activity that fall—adding significant storage and worktable space to our home office most notably, but active on a great many projects in parallel—and the week of steroids only kicked that up a notch. The meds did their job and my symptoms abated. I felt a huge weight lift also as the estate officially closed and, with the scattering of his ashes, my duties as executor came to an end. I turned my attention with relief and eagerness to my own projects, and somewhere inside I began to give myself permission to stop scrambling so hard

Some of that slowing down was just plain stumbling. It was the fatigue of all the hard work I’d been doing and the shocks I’d been weathering, exacerbated by life under the Trump Administration. The anxiety brought on by the past few years—compounded by perimenopause and (though I didn’t understand it well then) the side effects of my medications for my disease—was showing its fraying edges.

Thanks to my years of practicing Discardia, my instincts in times of overwhelm and low mood are good. I began to create space around myself and turn my attention from that which drains me to that which restores my calm. I unfollowed a large amount of my Twitter list, already quite low, to tune my Twitterstream to a generally more positive mood. I returned to my love of games and began thinking about how to create happy, positive, calming games. But I was feeling very tired.

At the very end of December 2017 and in the first days of 2018 I began having symptoms of the more intense form of my autoimmune disorder and my life changed completely. Because my symptoms I had to change major aspects of my daily routine, even after I very rapidly got a confirmed diagnosis and began taking medication—twice the dose of steroids as before. Extreme sensitivity meant I had to change my wardrobe entirely, not only fabrics but the style and fit of clothes. Massive fatigue transformed me from a “these are the 30 things I want to do today, but here are the most important 10” person to a “it was a good day, I got 1 thing done” person. And increased anxiety and overwhelm (plus being on immunosuppressants) further limited my ability to participate in social and political life. The medications distorted my body over the months, bloating my torso and giving me ‘moonface’. But they did work to put the disorder into submission, possibly even remission entirely, though I won’t know until I fully taper off the medications.

And there’s the real challenge. Prednisone works great to knock disorders like mine into submission, but the hell it puts you through along the way is brutal, so you want to take it for as short a time and as low a dose as is possible while remaining effective. Other immunosuppressants like, the post-transplant medication Cellcept, can maintain that symptom suppression with milder side effects (for me mostly bloating and distortion of my lower torso, plus some fatigue). So as soon as my symptoms abated, I added Cellcept to my regimen and began the agonizingly slow process of tapering off prednisone.

You can’t just quit prednisone, you have to wind it down very, very slowly. And because—at the kind of peak dose I was on (40mg/day)—it says to your cortisol system, “Hey, I’ve got this, go take a vacation” you find that side effects continue to be life-disrupting for months and months. I dropped from 40mg a day to 30mg a day of prednisone on February 13, 2018, after taking that highest dose for just four weeks. My taper reached 20mg a day on March 27, 2018, and 10mg a day on May 12, 2018. But it’s that last part that is the most difficult to wean your body off of as you wait—and wait, and wait, and wait—for your cortisol system to wake up again. It’s May 24, 2019, and I am just next week hoping to bring my tapered dose down to 2mg a day.

Had I known then what I know now, I’d have done my taper differently instead of going too fast last summer and winding up needing to spend three months holding at 5mg a day. Now I taper ridiculously gradually by altering my dose within a week. I was at 3mg a day. Then after at least two weeks at that dose, I started taking 2mg instead every third day: 3/3/2. If that is giving me trouble at the end of the first week, I go back to 3mg a day for two weeks before I try it again. If it’s okay, then after two weeks of 3/3/2, I try 3/2/2. That’s where I am now and it’s going well. Next Wednesday I’ll begin a couple weeks of 2mg a day before I evaluate whether I can proceed to 2/2/1. Best case, which I’m learning is unlikely, I’ll be off prednisone in about three months.

Whenever I do finally break free of prednisone, I need to spend at least another month letting its influence leave my system before I can start to consider beginning my Cellcept taper. I’m hopeful (and pretty confident) that that is not nearly as rough a process. But even so, I can expect that the soonest I’ll be living without my body altered by these medications or the presence of this immune system disorder will be over a year from now.

My life has been radically changed for multiple years. My fatigue and anxiety forced me to bring my world to a standstill; to stop the ride so I could get off and evaluate things. And that evaluation and this experience have brought me new skills (meditation and acceptance, most valuably) and clarified priorities. I am not the same person I was, and for all the difficulty, I feel good about who I am now.

Even if I had my old energy and health back this instant, I would not resume the life I had before. I am closer to center than I was and I like that. I continue to work to regain my strength and vigor, but for new priorities. I feel that I am standing in the early morning sun beside a large field, shovel in hand and ready to continue the slow, satisfying work of turning the earth for a garden.

Creating Space to Be Myself Now

One of the key lessons for me of the past few years is that it detracts from my wellness to try to have both my list from before the various crises in my life and my list of what I need and want to do now. However much I say, “oh well that old list is on the back burner”, it is still bubbling and using my mental fuel. I can’t have two #1 items, even if I tell myself that one of them is not active for the moment. I gotta recalibrate and bring it together in one calm vision for myself.

The best thing about accepting that is that the process of integrating my expectations of myself is an inherently therapeutic process. Though the enhanced calm is important, most of that benefit is coming from really giving myself permission to drop things. Not just shove them back ‘for right now’ (i.e., years), but let them go. Discardia is good for the soul and for reducing that overwhelmed, inflamed feeling.

The biggest change is re-orienting myself to my writing and other creating. I am refocusing myself on the creative work and away from the idea of producing products on a particular schedule. It doesn’t make anyone less of a Real Writer to give a work the amount of time it needs to come to fruition. Nor is it mandatory to bring out a new book every couple years. The publishing industry would like you to, but I don’t write for a publisher; I write for myself and my readers.

As I’m sure a lot of stay-at-home parents or others who are outside the paycheck economy have struggled with, validity is not measured by take-home pay. Much of our culture sends a different message, so it takes work to find solid footing to appreciate yourself and what you do. In my case finding that footing is helping me recognize a few “to-do” items on my list which were more cargo cult enacting of “being a publisher” than necessary to the process of writing and sharing my work.

One thing that prompted some of this change is that the medication I was prescribed about a year ago limits me to two cocktails a week. I find I really can’t be an active cocktail writer under that constraint and I don’t want my work and my wellness to be in conflict, so I’m giving cocktail writing a big “I love you, man, you’re the best, no I mean it, I love you, all you guys” sloppy hug and going home.

Not writing a sequel to The Art of the Shim: Low-Alcohol Cocktails to Keep You Level lowers the need for a lot of the capital P publisher infrastructure we’d created. Simplifying that part of my life is some of the work I’m doing this month and I’m already enjoying the lightness it is giving me. I don’t have to put out a book this year because it’s been “too long” since the last one. I don’t have to feel guilty over a long list of posts and essays I thought at one time that I’d write. Cool ideas! Okay to let them go!

This exercise in looking at where my time vs. where my mental energy goes vs. my actual current priorities has also unveiled some time sucks that I can prune away. Goodbye, Twitter. It’s not me, it’s you. You make me anxious and distracted and frankly, you have too many nazis and misogynists and racists and homophobes and paranoid dudes who think giving babies free food is gonna take food off their own plate. Ugh. Good riddance to that distraction.

I looked at the carefully curated list of accounts I followed, added a lot of them to the website feed reader built into WordPress.com, let go of the “need” to keep up with some, and made a monthly reminder to check the other two that couldn’t go in the feed reader to see what they’ve been up to. Then I added the Switcheroo Chrome extension to redirect me to my WordPress Dashboard every time I try to go to Twitter.com. It feels fantastic and I am already getting a lot more done with my day.

Yes, I’m on Mastodon, but both it structurally and my decision of the number of people I follow on there are designed to be very quick to keep up with. It doesn’t devour twenty minutes of my time multiple times a day in the way Twitter can.

I’m excited about this paring down and focusing. I’m excited about the space I’ve created for healing and for whatever creative projects I want to do now. I’m grateful to myself for the permission to let go, to be done with things. My shoulders feel lighter.

I’ll be posting more in the coming days as I part with some of these past projects. I hope you enjoy this somewhat random tour through my interests. 😀

Deep calming games

After receiving an alarming medical diagnosis mid-month in January*, I've been very actively using computer games to help manage my situation. This autoimmune disease manifests itself in scores of itchy bumps. The initial treatment is prednisone, the main side effects of which have been insomnia and mood alteration (primarily an increase in anxiety). Games have been enormously helpful in managing both, and in lowering my stress levels overall as I deal with this.

While many games can appear soothing in early stages, they are often designed to increase in intensity, which is counter to my goal of calming my system. Below are a few which I've found which do work, and which have interesting side benefits. There are three key patterns I leverage as I (and my meds) work to reduce inflammation.

 

1. Stillness as a Constant Option

The one absolutely vital quality of a deep calming game is that at any moment you can stop the game without penalty to take a deep breath, let your eyes focus on the other side of the room, or otherwise pause not only your hands but your mind. This can take the form of simply stopping doing anything—as in turn-based games where there is no ticking clock—or changing out of the game screen—as in games which pause and retain your exact position when you switch applications. Some games are mostly turn-based with brief sections that don't allow pausing; Another Case Solved is a good example of that non-ideal mix, but it is just calming enough to remain on my list.

 

2. Impulse Interference

It turns out when you're trying not to scratch, it's possible to divert the physical world pattern you shouldn't act on into a virtual pattern where relief is easily available. The game element you want here is a random or semi-random resource which appears and needs to be 'harvested' or otherwise responded to individually. Collecting the magic fountain energy in Sunken Secrets or the tax revenue in Townsmen are ideal examples. I found that my brain slipped pretty easily from "argh! itchy spot I want to scratch!" to "aha! another coin to collect!" and that, amazingly, the act of touching the resource on my iPad screen with my finger took away the urgency of a specific physical itch on my body. This trick was probably the key ingredient to my getting through the initial awful weeks while I waited for the corticosteroids to begin reducing my symptoms. It's highly likely I would have scarring if I hadn't been able to divert that scratching urge.

 

3. Sense of Positive Action

Maintaining an optimistic attitude during very gradual change is a challenge. When my body is less able and my mind is less focused that becomes even harder, especially in those grim grey hours of the night when prednisone wakes you all the way up after three hours sleep. Games offer a space where I can act toward both short- and long-term goals and feel less powerless. The difference with deep calming games is that this needs to take place within a low-conflict (or at least very low-consequences) mood. When managing anxiety and using mental imagery to reduce bodily inflammation are the goals, tough battles against powerful foes are definitely not my friends. Enter, therefore, games of constructive, peaceful acts which build upon each other. These can range from the very simple—growing my fish and expanding my pond in Zen Koi—to the more ongoing and epic—building my farm and improving things for my imaginary neighbors in Stardew Valley. The tough part here is finding a game with the expansiveness that makes it maximally calming and yet which doesn't require fighting off attackers. (I've got enough of that going on with my autoimmune system, thankyouverymuch.) I am a long-time fan of simulation games, particularly old Windows city-builders and economy-simulators like Pharaoh and Cleopatra, but there are very few around which don't involve (or allow you the option of turning off) combat as a major part of the game. Farming and house-building games are the dominant form now, but many of them are tainted by in-app purchase models which render the games less fun as you progress in an effort to make you spend money to make it easier again. That flaw is what led to my abandoning Gardenscapes and Homescapes, neither of which I can recommend anymore despite their fun aesthetic and sense of humor. For the moment, Stardew Valley, and to a lesser extent Townsmen, is best to fully engage my mind in creating and achieving goals.

*Thanks to corticosteroids this diagnosis is not life-threatening, but it is life-altering.

media I’ve enjoyed recently

Advertising and Selling

Morgan Spurlock: The greatest TED Talk ever sold (TEDtalks)

Full Price Beats Penny Saved for Selling Some Items (60-second Science)

Candidates Affect Viewer Reactions to Ads in Debates (60-second Science)

Creativity

Michael Pawlyn: Using nature's genius in architecture (TEDtalks)

Jacqueline Novogratz: Inspiring a life of immersion (TEDtalks)

100,000-Year-Old Art Studio Discovered (60-second Science)

Education

Bill Gates: How state budgets are breaking US schools (TEDtalks)

Patricia Kuhl: The linguistic genius of babies (TEDtalks)

Science Grad Students Who Teach Write Better Proposals (60-second Science)

Doodles and Drawings Help Cement Concepts (60-second Science)

Food and Drink

Student Researchers Find Secret Tea Ingredients (60-second Science)

Molars Say Cooking Is Almost 2 Million Years Old (60-second Science)

High-Pressure Food Treatment Can Kill Microbes And Up Nutrients (60-second Science)

Health and Growth

Charity Tilleman-Dick: Singing after a double lung transplant (TEDtalks)

Molly Stevens: A new way to grow bone (TEDtalks)

Gamekeeper's Thumb Condition Outlives the Occupation (60-second Science)

Test Tells Viral and Bacterial Infections Apart (60-second Science)

Poultry Farms That Stop Antibiotics See Resistance Fall (60-second Science)

Endurance Exercise Has Stem Cells Make Bone Over Fat (60-second Science)

Carbon Nanotubes Impale Compulsive Cells (60-second Science)

Online Gamers Help Solve Protein Structure (60-second Science)

Health Data Could Spot Genocide Risk (60-second Science)

City Cyclists Suck In Soot (60-second Science)

Rapid PCR Could Bring Quick Diagnoses (60-second Science)

Pathogen Genomics Has Become Dirt Cheap (60-second Science)

Kid Scientists Show Medicines Can Be Mistaken For Candy (60-second Science)

Fever Increases Numbers of Immune Cells (60-second Science)

Nature and Sexuality

Christopher Ryan: Are we designed to be sexual omnivores? (TEDtalks)

Mole's Extra Finger Is Wrist Bone-us (60-second Science)

Full Moon May Signal Rise in Lion Attacks (60-second Science)

Send Ants to College (60-second Science)

Sea Lampreys Flee Death Smells (60-second Science)

Toxoplasma Infected Rats Love Their Enemies (60-second Science)

Modern Rivers Shaped By Trees (60-second Science)

Upright and Hairless Make Better Long-Distance Hunters (60-second Science)

Electrolyte Balancers Set Stage for Multicellularity (60-second Science)

Flesh-Tearing Piranhas Communicate with Sound (60-second Science)

Politics and Philosophy

Jody Williams: A realistic vision for world peace (TEDtalks)

Martin Jacques: Understanding the rise of China (TEDtalks)

El Nino Ups Conflict Odds (TEDtalks)

David Puttnam: What happens when the media's priority is profit? (TEDtalks)

Steven Pinker: Violence Is Lower Than Ever (60-second Science)

Technology and Physics

Johanna Blakley: Social media and the end of gender (TEDtalks)

Leyla Acaroglu: Paper beats plastic? How to rethink environmental folklore (TEDtalks)

Dan Berkenstock: The world is one big dataset. Now, how to photograph it… (TEDtalks)

Medieval Armor: Was It Worth the Weight? (60-second Science)

Traffic Cameras Save Millions in Canceled Crashes (60-second Science)

Juno Mission Gets Goes for Launch (60-second Science)

Channeled Chips Can Spot Substances (60-second Science)

Smartphone System Saves Gas (60-second Science)

Sound Sends Electron to Specific Location (60-second Science)

Moon Not Made of Cheese, Physicist Explains (60-second Science)

Feeling great

My relationship with my body is doing so much better since I started exercising and eating fresh foods more! I feel stronger and more alive.

Some of that liveliness may be coming by contrast to the less articulate of my coaches: the shambling hordes of zombies pursuing me at least three times a week, thanks to Zombies, Run! Great writing, voice acting, and a compelling story fight against procrastination to make sure I keep on my exercise schedule of 30-60 minutes at over 3.1mph on the treadmill every other day. That's enough to get me in a great sweat and (I think, though I'm not measuring it) get my heart rate up.

I'm walking fast rather than running because it's so much gentler on my body. With my previously injuries to knee, ankle, toes, it's better to play it safe and steady.

I'm now trying to do 12,000 steps a day, including on days when I don't have a workout. The treadmill desk really helps for that. I don't always make it, but now I'm embarrassed to end the day under 7,000 steps, so I can tell I've created a good new normal.

The desk has also made me really good at typing under odd circumstances. Currently going 3.5mph. Usually, I'm going about 2.1mph or so, but the music was so good when the last mission ended seven minutes ago, I just kept going at the same pace as we went into radio mode. Hadn't even noticed I was still moving that fast. Yay!

In parallel, I've upped our produce delivery from Planet Organics to come every week instead of every other, which means I'm eating a meal of a big chopped salad or pan-seared greens several times a week now.

I've also gotten the app Paprika for my iPad, which I'm using to create recipes for all the things I know how to cook, to remind myself to do that more instead of ordering in, eating something pre-packaged, or going to a restaurant. Just went through all my Flickr photos in the past week and captured lots of reminders of recipe names and images, plus in some cases detailed recipes where I'd written them up. There really is something motivating about a personalized cookbook. Haven't gotten into using Paprika's other menu planning and shopping list features, but am looking forward to them in future.

All in all, I'm feeling really good, which was the main motivation for this. Going down in weight or clothing sizes might be nice, especially if it reopens certain options in my wardrobe, but it's really about feeling strong and happy and healthy.

Getting healthier

I'd grown dissatisfied with how strong and healthy I was feeling and frustrated over clothes that didn't fit anymore. Here's what I've been doing to change that:

Eating more fresh food and cooking more from scratch.
This is an old habit I'd fallen out of so I have good skills here that just need reviving. One of my biggest tools to help with this is a weekly produce delivery from Planet Organics. They have grocery items as well as produce and even have recently added a CSA box within the order, selectable or not by the week rather than being locked in, which is a big help for folks who travel a lot.

Walking 10,000 steps or more a day.
Still trying to reach the point where I do this without fail, but the treadmill desk helps a lot. I haven't left the house today and haven't been doing much around the place, but as I write this I'm going 1.9mph and have already hit 3300 steps just catching up with email, doing my weekly review, etc. The tool that helps motivate me here is my Fitbit. I thought about adding a Nike Fuelband, but I tend to hate bracelets since I'm typing a lot of the time.

Measuring my weight and BMI.
I use a Withings scale for this (Joe has one), but actually track the measurements on the Fitbit site. The other tool that supports me here is the Bang Bang diet app, which is basically a tracker tool for the Hacker's Diet: if you're on track for your weight loss goal, eat normally, and if not, eat light. Haven't tried the Withings app, but am about to try it out.

Making chopped salads.
I know this shouldn't seem like such a big deal, but I think having one of these every week has really helped, and they're so delicious I feel confident I could up that to twice a week. I got the idea from this Jamie Oliver podcast.

 

Is it working? Well, after gaining about 10lbs in the last year (when I was actually trying to lose 13lbs), in the last two weeks I've lost over 4lbs. I blame restaurant dining, inactivity, and cocktails, but mostly restaurant food. Now probably half of this recent weight loss comes from when I had food poisoning (not salad related, I'm pretty confident), but even if I am losing a couple pounds a month, I'm going to be feeling a lot better by spring and will have installed some good habits under my skin.