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]