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!)

Paring Down

My “old” 2019 MacBook has had an increasingly rough time over the past quarter. Fans running hotter and hotter. Since I’d planned to sell it after my next upgrade sometime in the 6-18 month timeframe and the new 16″ MacBooks haven’t been announced yet, I’m upgrading early in hopes it’ll result in both a chance to sell it for a slightly better price and to get immediate relief for poor performance. (It’s a perfectly good machine, as far as I can tell. Its problems seem to be related to many years of migration from Mac to Mac, using Time Machine or the Migration Assistant. Too much old system and application cruft weighing it down.)

This time my upgrade is a size down. I’m in love with my extra-wide monitor (LG 34″) and find I increasingly wait to do some tasks until I can be using that extra space. So, having a large screen laptop isn’t really a priority (particularly since it’s a pandemic, I’m immunosuppressed, and I’m hardly going anywhere anyhow). I’ve gotten a 13″ M1 chip MacBook and it seems quite nice so far. It arrived on Thursday and my main project since then (apart from a lovely six-hour visit in person on the back porch with dear old friends), has been setting it up without dumping every single thing I’ve ever had on my old Mac(s) onto the new one.

I’ve figured out I can now do without TextExpander, instead entering the 30 or so key replacements (typing ssf to insert San Francisco, for example) in System Preferences > Keyboard > Text.

I’ve decided to phase out Evernote and instead have a new Scrivener project called File Cabinet with all the “I should hold on to a copy of this piece of paper” stuff. That’ll be a gradual project, which is fine because I’m paid through the year and Evernote doesn’t do prorated refunds. I’ve got 875 non-archived notes in Evernote to potentially migrate, but 250 of them are recipes I likely won’t want all of, so I doubt this will be particularly onerous to take on in batches of 25 notes or so.

I think I’ll skip Time Machine for backing up this Mac; I’ve gone years (probably over a decade) without starting from a clean install like this. It’s taken most of a couple days to get this new machine how I want it, but that seems a fair price for those years off from the task—and it’ll be easier the next time.

I’ve decided to take a wait-and-see attitude toward reinstalling Skype. I haven’t actually made much use of it since around 2016, I think.

With a salute to my past self, I’m also taking a wait-and-see attitude toward installing a code editor. I had Coda, which is now, I learn, Nova. Still looks like the one I’d want if I wanted one, but I’m not actually writing HTML/CSS anymore.

I’m wavering over Microsoft Office. I’ve had some frustrations with Pages and Numbers, for sure, and both Google Docs and Sheets have their limitations. But oh the cruft that comes with a massive install like that. And with great power comes great complexity to learn. Do I need either of those things in my life? Maybe ‘good enough’ really is? Going to try that out for a bit anyhow.

Which brings me to my other “is it worth it?”: Adobe InDesign. On the one hand, it’s an amazing tool which I can bumble around in OK already. It’s what I’d need to prepare quality documents for publishing, whether books (which I’m not currently working on) or game components. But, though I am making a game, I’m not a visual designer, so maybe I can just make do with lesser programs for my playtest purposes. That’ll let me avoid the CPU devouring Adobe Creative Cloud, at least until or unless I’m working with a visual designer.

I think the theme for my computer and my life is now: Less Cruft.

Oh hey, a well-regarded alternative to InDesign, Affinity Publisher, which can import InDesign files even, is on sale for $24.99. After a bit of YouTube review and intro watching, I’m going to give it a try. [Gave it a try, but had many many crashes on my first very simple document. Maybe it works great for some, but certainly not for me. Availing myself of a refund and reminding myself to always do the free trial if there is one to save me and the company time. Asked advice in a creative coworking group I’m in and had the good suggestion to explore Layout mode in Pages, the app that came with my Mac, and that’s working great.]

These are the apps I installed on the new machine. First, the everyday essentials.

  • OmniFocus
    My home for tracking all my tasks and someday-maybe ideas. I’ve been a big fan for years and use it every single day.
  • Roon
    Our household’s music management system of choice. It connects in to Tidal and Qobuz and has a good radio function, so there is always new music to explore. (I’m very grateful for Joe’s love of music, skill with system administration, and good taste for keeping this full of new sounds, running well, and looking great.)
  • Scrivener
    I write everything that isn’t email or websites or something on which I’m collaborating in Scrivener. Both my books grew up in Scrivener, my daily pages are in Scrivener, my gamemaster notes for running roleplaying games are in Scrivener, and all of the rules design for Kabalor started in Scrivener. Part of my baseline essential kit.
  • Dropbox
    These days I use this for one thing only: keeping Scrivener synchronized between all my devices. It’s so helpful to be able to add to something I’m writing from whatever device is closest to hand at that moment. (But if Scrivener had its own sync servers like OmniFocus does, I’d have skipped Dropbox.)
  • Slack
    Since I don’t do social media anymore, this “workspace chat” is where my group connection with friends takes place. I also use it for a volunteer gig.
  • 1Password
    This whole build-it-from-the-ground-up and log-in-again-to-all-the-things project has been made so much easier by this wonderful password manager. Super nice company and super good product. If you don’t have a password manager—you should—or your current one makes you sad, do yourself a favor and get some peace of mind.
  • Time Out
    My rest reminder software. This gets me to rest my eyes, brain, and wrists and is an essential health tool.
  • Zoom
    Vital for me to stay connected with friends and family—and where I gamemaster my ongoing roleplaying games.

Other stuff that I installed:

  • Affinity Publisher
    As mentioned above, tho’ I haven’t tried it out yet.
  • Steam
    My game platform of choice. Current game of choice: Wingspan, the online version of the bird-themed board game with magnificent game mechanics.
  • Arq
    For managing cloud backups of my files.
  • Firefox
    My secondary browser, handy for seeing if some issue is a Safari problem and for logging into alternate accounts without having to log out and back into my main one.
  • Kindle
    The desktop app for my ebook reader of choice. Though I rarely read ebooks on my Mac, it’s often easier to manage my ebook library on a bigger screen.
  • Pixelmator Pro
    I’ve been using Pixelmator for my graphics needs, which are almost entirely maps for my roleplaying games. I took the reinstall task as the opportunity to upgrade to the latest and greatest.
  • TweetDeck
    Every now and then I post something on Twitter in the Discardia account (very rarely any other), but since Joe’s account is private, this is the only way I can read his tweets now that I’m not on Twitter generally. 🤣

It really says a lot about a) the utility of the base set of apps that come on the Mac and b) how much I use browser-based apps that the above is the entire list of installs.

Onward to my de-crufted future! Happy Discardia. 😁

Now if only after my hard day of computer setup I could join the lovely Apple support person I chatted with this morning. She was going to do a Juneteenth crab boil with her family and oo does that sound delicious. But, in the absence of that, I’ll enjoy this baked potato with all the fixin’s and revel in the lack of noise of computer fan.

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.

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.

Zipper Pouch with divider and pen holder

My latest sewing project introduced me to

  • changing the foot on my sewing machine
  • using a zipper foot
  • sewing a zipper
  • modifying instructions without making additional pattern pieces or a mock-up

I looked at a lot of zipper pouch tutorials and then mostly followed these two:

I wanted to do a quick learning project that would also result in a gift for my mom’s cousin, author C’Anna Bergman-Hill and which would use a fabric she really liked from my remnant finds at Shaukat Fabrics in London.

This was fortunately on my mind last month when I went to Fabric Outlet, so I remembered to bring the remnant and get a matching thread and 9″ zipper. The next step was to decide which fabric to use for the outside of the bag. I wanted something sturdier than the light, almost-chiffon of the remnant to help give the pouch some structure. I hadn’t bought a fabric intentionally for this on that shopping trip, but a brown linen remnant I’d bought then (intending to try making fabric coasters with it) turned out to be perfect. I recommend fabric selection as a lovely “last thing of the day” activity; I went to bed that night feeling happy about the upcoming project.

Because I am kind to my future self, I had already washed both fabrics before putting them in my fabric storage area. Thus when I was ready to get started all I had to do was iron. Being a little nervous that ironing, even on the wrong side, might make the linen shiny, I tried using a piece of muslin between it and the iron as a pressing cloth and that seemed to work fine.

A narrow white table with a plush bath towel draped down it. A bright flowered print fabric and a plain white muslin are atop the table, with an iron to the right of the towel and various bits of sewing-related stuff pushed out of its way.
No ironing board, but a thick towel on my worktable is fine.

The idea of changing zipper length is a bit daunting, so I chose a pouch design where the pieces are the same length as the zipper tape (the fabric part of the zipper). I used that as the width and then decided on a height based on wanting to be able to fit a little notebook and a short pen pocket inside. I made one paper pattern piece for that and cut out four pieces of the lining (since I wanted to add a divider inside to create two pockets) and two pieces of the outer fabric using it.

Rectangles of bright flowered fabric sit on a white table. Blue tailor's chalk  has been set down after marking around a green paper pattern sitting atop uncut fabric. The point of a pair of tailor's shears sticks into the picture from the right.
I thought just holding the pattern piece down and then using tailor’s chalk would be precise enough for this, but next time I think I’ll at least put a few pins in, mark with chalk all around being more careful to keep the chiffon from shifting around, and cut more carefully with longer strokes. It’d just be a little easier in the later stages when lining up all the layers to have their edges very regular.

Then I cut out two 2″ squares to cover the ends of the zipper and a piece to become the pen pocket.

Rectangles of bright flowered fabric (in a pattern of gold, green, and coral colored dahlia flowers on a sky blue background) are neatly arranged with three smaller pieces beside them. A cheerful hot-dog-mustard-yellow zipper rests above the flowered fabric and the edge of  dark brown linen fabric rectangles is visible at the left of the picture.
Here I’ve got the divider pieces stacked and I’m playing with the pen pocket piece, folding over the ends so I can give it extra toughness to help withstand the pressure of having a pen shoved in, grabbed quickly, and rubbing on things while the pouch is inside a purse and moving around.

I gave the pen pocket a lot of extra folded fabric around the bottom where it will experience the most strain.

Dinah's fingers hold down the pen pocket piece in progress. It is a rectangle folded lengthwise to make a tall sleeve open along three edges. The top and bottom edges have been double-fold seamed, and the bottom edge has now been folded over again that same amount, ready to be sewn into that position.
Double fold seams sewn at the top and bottom of the pen pocket and then the bottom folded over to be sewn again.

Next I pinned the two divider pieces wrong sides together, stitched across the top, and flipped them around so I could attach the pen pocket by one edge (on a right side of the divider fabric) by stitching along its righthand side and bottom.

The pen pocket piece, pinned to the divider layers, is on the sewing machine. Its folded edge is under the needle, ready to stitch down the long side and around the bottom (in a reversed L shape), leaving the open long edges of the pocket even with the side edge of the divider where it will later be stitched into a seam. Dinah's fingers are holding the tails of the needle thread and bobbin thread out of the way to the left.
I’m still getting the hang of keeping my thread tails out of the way when I start, so that I don’t end up sewing one into the end of a seam or making a lump. Getting better bit by bit!

The folded design results in a two compartment pen pocket.

Dinah's fingers hold up the two folded sides of the pen pocket piece, now stitched to the divider layer, to show how they form a double pocket (the divider piece acting as a backing).
Such a lightweight fabric won’t hold up forever, but this ought to work for a while.

Note how it is placed on the divider piece as high up as will comfortably allow a small pen to fit in there (I tested with the pen I’ll be gifting with the bag) and will allow room to shorten the divider in the next step for a good fit.

Press the divider piece flat, wrong sides together, as it will be in the finished pouch. Then trim a bit off the bottom to allow clearance for the zipper to be used without constantly snagging on it.

On top of the plush towel, with the iron's edge just visible at the side of the photo, the divider piece and one of the side lining pieces have been arranged edge to edge, right sides up. The top edge of the divider has been positioned about half an inch shorter than the lining. A steel ruler rests in line along the bottom edge of the lining, sticking across the divider piece and indicating where its bottom edge will need to be trimmed. White tailor's chalk and large, shiny metal tailor's shears are ready to mark and trim.
I just eyeballed this, but it worked pretty well. I’d probably go another .25″ shorter in future, but this works fine.

On the top is the divider piece, on the bottom is one of the lining pieces. Remember that the divider bottom is still unfinished and will need to fit into the seam between the lining pieces later, so make sure there’s some seam allowance room under the pen pocket.

Yes, my tailor’s shears are a work of wonder. I love them so much. And they return safely to their private storage box when I’m done cutting fabric so I never use them on anything I shouldn’t or knock them on the floor. You can watch how they were handmade in this wonderful 5-minute documentary. Supporting craftsmanship like that is very important to me and these make me happy every time I touch them.

The next step is when I started to feel myself pushing into new territory. I wanted to be sure I didn’t bring the sewing machine needle down on a metal part of the zipper, so I was ever so careful. First I put a pin into one of the little 2″ squares right at the zipper stop, the fabric’s right side is toward the zipper. And stitched as near that as I could without hitting the pin.

Yellow zipper tape ends protrude from under a pinned piece of bright flowered fabric which has just been stitched on.
Don’t hit the pin, you don’t hit the zipper stop.

Then I folded it back over and stitched it down again, now being able to see and avoid the metal stop. I just put a pin in there to keep the zipper tape ends flat and even and keep the square nicely placed.

The bright flowered fabric has now been folded over to show its right side, revealing the bottom stop of the zipper, and pinned so it can be stitched into that position.
You can see where I wasn’t happy with my first try at attaching this and seam-ripped it out. Perfectly fine to leave it rough like that since that bit of fabric will be inside the walls of the bag and never seen.
The zipper and small piece of flowered lining fabric after that stitch,  showing a neat finish that matches the lining which may or may not show on the finished piece (but looks much better than gapping zipper tape ends if it does show).
And that’s how it turned out.

The business end is a bit trickier, but here’s how I did it. First, I noticed that there are are stop pieces at that end too, they’re just more subtle.

A small square of bright flowered fabric sitting beside a partially unzipped yellow zipper.
Unzip a bit to get the pull out of your way.

Use your fingernail against those to figure out where to put your pin holding the tape ends and 2″ square (right side down!) to the zipper tape.

Dinah's fingernail pressing down just over the top stops of the zipper, with the square of flowered fabric under her finger and a pin just put in to secure it in that spot.
The needle of the sewing machine ready to descend into the pinned piece, about as far to the right of the pin as the pin is from the top stops.
I thought I was keeping as close as on the other end, but I think I placed it a bit too far beyond the zipper end.
The finished zipper piece, with flowered fabric squares hiding the tails at each end, sits in front of the sewing machine.
Perfectly fine, but still could be a bit prettier at the top end (on the right in this shot). In future, I’d pin at the top stops so that the stitch comes down about half as far from them as it did here.

Next it’s time to make the zipper sandwich. Just keep looking at your work, flipping things back, imagining the finished piece, and thinking about right and wrong sides of the fabric.

Dinah's hand peeling back a layer of lining fabric over the zipper layer over the exterior fabric layer.
So much mental gymnastics going on as I imagine the stitched result and flipping it open and using the zip!

I found it helpful to spin that around and pin the pieces with the edge I was about to sew facing toward me. It helped me get the pieces lined up evenly.

Lesson for the future: consider the position of the pen pocket in relation to the zipper opening. My concept had been that you’d unzip the bag just a bit and there would be your pen. When I’d pieced it all together and stitched it, I realized I’d put the divider the wrong way round and the pen is all the way at the foot of the zipper. Well, it’s less likely to get lost that way, right? 😀

The pinned pieces—exterior side, zipper, lining side—sit in front the sewing machine. The machine's manual rests in the open space in the body of the machine.
Notice also how, knowing the next step requires the zipper foot, I have stuck the manual into the machine to remind me to change feet before sewing the next part.

Those green lights in a wooden block on the top left are my Make Time Clock by Chap Ambrose. There’s a lovely metal push switch at the top that starts a light flashing while I do a session of making and when I’ve completed it, that light stays solid. When I come into the room and see all six lights shining, I know it is a good week. 🙂
The clocks are, alas, no longer available to buy, but I don’t blame Chap; as he says, “I walked the fury road of Kickstarter fulfillment and came out stronger on the other side.”

My first time with the zipper foot was an adventure.

ALWAYS LOOK AT THE PRESSER FOOT BEFORE YOU FIRST REMOVE IT AND THEN IMMEDIATELY TRY PUTTING IT (NOT SOME OTHER NEW FOOT) BACK ON.

I did not do that and so, having pulled off the presser foot with much more ease than I expected, I tried sticking on the zipper foot and was totally confounded. First I tried locking in the wrong end of the foot, then the wrong part of the right end of the foot (it’s the wee bar you’re locking onto it not any of the part of the foot behind that). I went back and forth with the manual, my fingers getting sore and nearly in tears afraid I’d break my machine pushing too hard. It turns out the Janome MOD-19 feet don’t so much “lock in” as “kinda softly sorta snap and you’re hardly sure you’ve actually attached it”. Sigh. Thank goodness for YouTube videos and extrapolation from other machines to my poorly documented model.

To help, here is a nice big picture of sewing with a zipper foot on the Janome MOD-19 sewing machine.

Fabric ready to be sewn rests under the sewing machine's zipper foot. The foot has two sections at the back part so that the notch the needle goes down into in the front metal plate can be just to the left or just to the right of a zipper.
See how just below the point of the needle there’s a gray plastic piece (that’s the foot holder) with a dark horizontal line in it? The horizontal line is the bar on the foot—you can see one in the righthand side of the zipper foot. THAT’s what you’re “locking” on to the Janome MOD-19 foot holder. Sigh. If only I had looked at it more closely and verrrry slowly removed the presser foot to understand this better the first time. Learning!

One of the videos gave me the tip about using the front part of the foot to target my seam (and I’m focused on the structurally solid part of the fabric to the left of the selvedge threads).

And here’s a zoom and enhance of that Janome MOD-19 sewing machine zipper foot.

A bar comes down from the sewing machine case and has a large screw attaching the foot holder made of gray plastic. There is a notch at the end of the foot holder that's fairly deep, but actually it's the very front of the notch that grabs the little horizontal metal bar in the foot. The needle comes down just a bit in front of that bar, going through a gap in the foot to reach the fabric. Under the foot, the jagged "feed dogs" move the fabric along ready to receive the next stitch.
The gray plastic foot holder is just holding the little metal bar of the zipper foot in its soft gray beak.

Oh my gosh it worked!!

Two rectangles of brown linen are connected by a bright yellow zipper, with floral fabric covering the tails of the zipper at top and bottom. The spacing between the pieces is slightly narrower in the middle part and wider at the bottom, but not by a lot.
My first zipper pouch top is looking pretty decent!

And from the other side…

Flipped over to show the flowery lining side, the wider spacing along the bottom part of the zipper is more obvious, but fortunately no one will ever be looking at this from the bottom of the inside of the bag. Ha!

Okay, so now we split the fabric types again, lining to one side of the zipper, outside to the other. That is “Refold the fabric so the matching sides are together”. And yes, partially open the zipper before the next sewing step.

Below we see layer 1 of the lining side, let’s call it “bag lining left” as we imagine looking at the finished bag edge on with the zipper at the top. “Bag lining left” will have its wrong side to the wrong side of the outside fabric of the bag.

A good view of the big bold flowers of the lining fabric at this step of arranging everything neatly to be pinned and sewn together.
Layer 1

Then we add layers 2 and 3, the divider.

You can see here I was lucky with my cutting (and the fabric design) to be able to beautifully match the flower pattern of the pen pocket so that it flows right into the pattern on the divider layer below it.
Layer 3, with its attached layer 2 under it, everybody’s edges all lined up.

And finally layer 4, a.k.a. “bag lining right”. Pin all four layers together, being careful to keep the pen pocket smooth.

Line up the outside fabric and pin it too.

The reverse of this fabric is more muted, but it's still pretty bold and exuberant. The sedate brown linen is a good visual rest from the stimulation of the flowers.
Here we see two white pins marking the correct location of the gap to leave in your stitching.

And this is where I goofed up. Because Life Sew Savory had put two versions of the bag in the pictures at the top of the page and reversed the fabrics between them, I kept getting muddled in her pictures between what was the interior (hot pink, it turns out) and what was the exterior (stripey green). So I thought I had the gap marked wrong and flipped it over to the exterior. *sad trombone*

ALWAYS PAUSE AND THINK THROUGH WHAT WILL HAPPEN IN THE NEXT STEPS AFTER YOU SEW THIS ONE, ESPECIALLY WHEN YOU’RE FIGURING OUT WHERE YOU’RE GOING TO LEAVE THAT LESS ATTRACTIVE PART WHERE YOU TURNED SOMETHING RIGHT SIDE OUT AFTER STITCHING.

I did correctly turn the zipper end flaps down toward the lining side at least.

The zipper end cover sticks out to the side of the lining piece. It is folded down in this step so that its near end is stitched to the lining edges. The far edge, sticking out, will fold down into the bag when the outside is turned right side out around the lining portions.
The little 2″ squares that were used to hide the ends of the zipper pulls leave flaps that stick out on the sides. If it was a stiff fabric I would have trimmed it, but this stuff is so light it only adds a tiny bit of structure to the bag as it tucks into the body here.

Well, I turned it right side out and looked at that gap in the exterior and thought about seam ripping all the way around and if it was a fancy thing and not my rather imperfect first try at a zipper pouch, I might have. But then I thought, “Eh, C’Anna won’t mind and I’ve been wanting to try out decorative stitches on this machine anyhow…”

A simple brown linen rectangle with a stripe of bright yellow-gold zipper at the top and coordinating stitching across the bottom edge in a pattern of arrowheads pointing up.

One part of the bottom edge sticks down a little below the decorative stitching.
Good enough! And that orange on brown stitching looks really nice.
The flip side; the part that sticks out, where the gap was, looks a bit messier on this side, but it's okay.
Flip side. Yeah, oh well. Could be better and the next one will be!

Given how plain the fabric is—in a nice Shaker simple sense—even when I do this pattern correctly in future, I’d be tempted to add a decorative stitch to the outside fabric pieces before putting it together.

But the inside is a great success:

Looking into the bag from the top, the two sides of the interior compartment, with their soft, cheerful flowered lining are inviting to the eye and pleasant to the hand. The color of the zipper brings out the color of the matching flowers (one third of which are that same golden yellow).
Two sections!
Looking inside, at the foot end of the zipper, is the hidden pen pocket.
And a pen pocket!

Okay, C’Anna, it’s going into the mail to you Monday! 🙂

Definitely still some issues with Typepad’s post-by-email…

… which is how I'm getting my non-reply tweets logged here on MetaGrrrl.com.

Many annoyances—CSS being ignored, category showing as text not applied properly, URLs in shortened form, truncated message text, images not passed through—are making me think before long I will have to bite the bullet and completely rebuild the site in software that's better maintained. Maybe for its 20th birthday…

no algorithm I’ve seen could come close to the subtlety of actual human interactions

That said, we don’t trust systems to understand what “best” means.

Just like Tay can’t tell what not to model its responses upon, no algorithm I’ve seen could come close to the subtlety of actual human interactions.

As an example, sometimes there are friends or family who are fairly passive with a social network, but whose activity—which a bot would interpret as uninteresting—is our way of keeping tuned into their level of depression. Sometimes we act on their messages but often just seeing them is enough (particularly when our primary social activity with them happens outside the feed).

Often there are inside jokes a bot wouldn’t get.

Algorithmic feeds which use activity level on a post/tweet/image are inherently biased against quieter relationships and smaller networks.

I follow high-signal folks like Anil Dash and very low activity folks who are important to me in the same stream. Algorithmic feeds don’t get the subtle differences and fail to put those folks on an even footing.

So, no, no matter how nice the folks are and how best damn product what they’re making is supposed to be, I will continue to reject algorithmic feeds and instead tune my follow activity to just what I can handle.

[my comment on a comment by Ev Williams on “Instagram and the Cult of the Attention Web: How the Free Internet is Eating Itself” by Jesse Weaver on Medium]

category: tweets

Me rejecting algorithmic feeds again: “That said, we don’t trust systems to understand what ‘best’ means.” https://t.co/DxKYrkS9io
@MetaGrrrl

persistent smiling as a lever for social change

I actually love the double set of doors for the opportunity it creates to smile and say, “no, no, these ones are my turn” and hold the door for him. Sometimes it takes a little extra encouragement—“sometimes you have to let the world be nice to you too”—and a lot of persistent smiling, but I do not give up and let him oblige me to be assisted.

[My comment on “Sexism is hard to explain” by Kel Campbell on Medium]