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.

Women and babies and time

Continuing my meditations on the oldest (retroblogged) posts on my blog, I visit the month after I was born.

A picture of my mother, 21 but looking 16, with a wiggling, dark-haired infant in her lap. Holding it (me) nervously as if it might give a sudden lurch like a fish and flip out of her lap. Summertime and we’re both warm. I can see bits of her hair sticking to her cheek, damp despite short sleeves and a skirt that stops above the knee.

A magnificent picture of my great-grandmother, seated in her pearls and a sedate blue-and-gray check short-sleeve dress, holding me in her two hands my feet on her legs and my head raised so she can gaze intently at me. I am so new; pale, plump, and pink. I contrast with her skinny, aged arms, spotted by time and sun, but strong enough for this burden. Her gray hair and the outline of the bones of her skull under her skin place her at the other end of life’s timeline from tiny Dinah. (And now I am far closer to her end than to where this little baby began.) What a thing for the first generation to look the fourth in the face! And how many babes had this woman held in her journey from the end of the 19th century through the tumult over the first six and a half decades of the 20th? Did she want children? Not much option not to have them until not long before this picture. And so she became a wife and a mother and a grandmother and a great-grandmother. A great accomplishment. What other things might she have done if she’d been blessed with the options I have?

On the way to the restaurant where I’m having a late lunch with my laptop, I passed babes in arms and strollers. What options will they have that I didn’t?

I return to the picture. Behind her black folding chair, a cinderblock and board bookcase—Ikea has removed most of those from today’s visual landscape—holding books, many of which are likely still to be on the shelves of my mother’s library. At the end of the top shelf a fancy candlestick—perhaps a wedding gift?—which I recall sitting with its mate on the big wooden sideboard in our kitchen.

To her left, behind my head in the picture, a graceful old piece of furniture with a curved front. Drawers below like a dresser, with a writing desk above. I remember this being beside my mother’s side of my parents’ bed, painted a green reminiscent of weathered copper. And I can’t now picture it anywhere else; I wonder what happened to it? I think all of us must have outgrown it and it didn’t move when they retired. They sold the huge, rambling house I grew up in “as is” and so many things stayed there. Released from our lives.

There is in the picture something big and black atop the back of the desk. My 21st century eye reads it as a wireless speaker, but of course it’s many decades too early for such a thing. A dark black box of paper or wood, with a latch on the front. Perhaps for holding letters and bills and stamps. I was born in the time of paper.

White and pale pink leap out from the picture: her shiny handbag, the outline of a book inside pressing against the soft side; my little baby dress (probably closed at the bottom to keep my feet contained); her pearls; the paper of the newer books on the shelf.

My little right hand is captured in a gesture, middle fingers together, pinky and index held out from the others. Cryptic, but emphatic.

And isn’t that just the nature of infants? Cryptic, but emphatic.

One last picture from this month: my mother and I entranced with each other. She is seated in a narrow armchair, hair in an updo that’s well on the way to a bouffant, wearing the long-sleeve plaid dress again. I am in her lap, resting on her legs, her feet tucked to the side together, ladylike. I look up at her eyes and mouth wide, hands raised, excited to exist and perceive. She is probably talking to me, saying my name, perhaps the name I wear now, perhaps the one that will soon be abandoned as not quite fitting this little bundle. She appears more confident about holding me; mothers learn fast.

I smile in appreciation at that love pouring down on me from her face, and now I close the old photo album, marking those posts private.

Oh, it IS a baby!

The oldest month of posts showing on my site as I start this post are from when I was born. First image: a tiny, round-faced human, sort of identifiable as me but I bet I’d have trouble picking it out of a line-up of similar babies. Strange to know what you looked like the day you were born.

Pictures of my young mother in hospital holding me. Her hair in a sort of bonnet to keep it out of her way, gazing down at the bundle in her arms. There is a giant bouquet of roses on the table beside her.

From the next day, my mother—and oh how her face in this picture is like the one I saw in the mirror at that age—seated in a chair and wearing a very big loose robe, gazing up at her mother, dressed for summer in a flowered, sleeveless shirt, a handbag on her arm. My grandmother is saying something; perhaps advice to a new parent.

A washed out picture of a baby in a diaper in a hospital bassinet, labeled with the name I was given at birth, but which was quickly displaced by “Dinah” (to which I legally changed my name at age 18).

I was assigned the sex “Female” at birth—it’s worked out fine, but seems over hasty to me from the perspective of 2019—and I was 6 pounds 10 ounces. This document has my little footprints. I am a hominid, all right. I theorize that they did the left foot first and I did not approve, so the right foot is all pressed down and the toes are curled.

Sometime late that month I was at home in a little white crib, in a room with blue light. I was a reasonably cute baby. I shared this picture on Flickr and my mother told a story of how they put together the crib wrong and the bottom fell out and I rolled out. No harm done except to cause some new mother panic.

There is a series of pictures of me being presented to my great-grandmother a week or two later. My mother is wearing a dark plaid dress, my father a light blue plaid shirt, rather rumpled. Neither looks well-rested. My mother’s father’s mother is wearing pearls and a neat little white short sleeve dress with a round white collar with a black bow on the front. The dress has a pattern of vertical stripes of patterns of something small, perhaps flowers. Narrow strip of white, double wide strip of pattern, and so on. I am wearing a swaddling cloth sort of arrangement and demonstrating my ability to stick out my tongue—blep—while clinging to someone’s fingers with my tiny right hand.

One of the pictures shows my terribly young father bemused as I apparently refuse to let go of his finger and my mother gazing adoringly at him as he gazes at me. For an unplanned adventure, they did pretty well with me.

Oh my goodness. I wonder if the little saucepan in this next picture of my mother’s mother holding me in the kitchen is the one I just put into the Goodwill box yesterday for Discardia. I think not, but it certainly could be. I am staring over her shoulder right into the camera, though I don’t know enough about babies to know if I’d even be able to focus on anything farther away than a face right over me at 10 days old.

None of these pictures fill me with a desire to have children or any regret that I chose not to. I’m very grateful for the life, to be sure, but I have ducked any sense of responsibility to carry on the genetic pattern.

And that’s probably a good thing. Humankind can do with a good deal less multiplying. Most of our challenges will be easier to solve with fewer of us. What an interesting world that will be. Makes me want to stick around another century, if I’m not in too much pain.

Thinking of the far future, I am smiling as I close the door and mark these posts private to cast the past into quiet darkness. Like putting the lid on a box, setting it in the back of a drawer, and closing the drawer, then walking off whistling.

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.

Win Conditions

Today’s flavor comes from an unintentional thematic stew. This morning I read an article about the early 20th century eugenics movement, watched part of the second episode of The Man in the High Castle, and read a Republican’s vow to work against a Trump presidency they feel would be “the greatest threat to American democracy since the Great Depression”.

All three touch on fear and disgust toward those who are different, a desire to eliminate those who are deemed impure, and a belief that a pure society is achievable.

Whether the inferior foe is “the feeble-minded”, non-Aryans, or Muslims and Mexicans, the proponents of these ideas believe that they can be removed from society. The means vary—sterilization, genocide, or really big walls—but the stated end goal is the same: “We won’t have to deal with those people anymore.”

But here’s the problem for these would-be purifiers: keeping all your followers excited enough to maintain your power means perpetuating the masses’ agitation over the aliens in their midst—and that means you can’t run out of aliens. Even if you eliminate that first foe you rallied them against, there has to be another or they don’t need you anymore.

There can be no complete success. The perfect and pure society never comes because totalitarian power never wants to step down.

Consider the opposite then: an openness toward those who are different, acceptance of multiple ways of being in the world, and an acknowledgement that any society of more than one person will always contain diversity.

Power, goals, and the definition of success are much more open under this scenario. The existence of difference doesn’t equal failure.

And that prompts King George from Hamilton to sing in my ear the surprise of the former point of view when it encounters the nimble success of the latter.

“They say
George Washington’s yielding his power and stepping away
‘Zat true?
I wasn’t aware that was something a person could do
I’m perplexed
Are they gonna keep on replacing whoever’s in charge?”


I’m voting xenophilia.



Politics
Donald Trump
Diversity



“Win Conditions”
@MetaGrrrl
category: tweets