I'm trying to get back into the habit of writing daily. Back like when I was on Google + (which I still miss, yes), I did this and I really liked the way it centered and crystalized my thoughts. And it's fun. I like words. I like arranging them and smearing them around and otherwise painting pictures with them. But what to do with the writings? Well, I'm not sure over all, but I figured today I'd compile a couple of days together and memorialize them in blog format.
Wednesday 10/11:
Fashion is definitely not conventional in my world. And I have tended to go back and forth between phases of very functional (workout clothes and yoga pants with nursing bras or oversized mens button downs) and very pretty (sparkles! Spinny skirts! Plunging neck lines! So! Much! Color!)
Then... MCAS, oh MCAS. I have contact allergies to a ton of different things. And pressure hives. It knocked out my hair styling, body moisturizer, makeupping, jewelry wearing and creative socks donning. It was a rough landing, becoming super reactive to being pretty!
Fun makeup, jewelry, whimsical socks, and sparkly adornments were a big part of my sense of self and it was hard to let that go. For a while I just kind of went into a sartorial depression and got by wearing plain cotton pajamas and oversizedhoodies all the time. A men's shirt and an extra pair of inside out pajamas when going outside. Because having outside and inside clothes is something I still hold on to at least when it's pollen season.
Nice hat, though. I did always have a nice hat. And I dressed up nice enough for the ballet when I had to.
On the one hand, fudge the dominant paradigm of "feminine beauty"! I'm all for the idea that a woman can still be a woman while dressing in "unfeminine" and sort of slouchy things. I owe nobody the obligation to be pleasing to your eye. Comfort uber alles.
On the other, I do take joy from pretty things, particularly on my body, Particularly if I can rub my hands up and down pretty textures or play with pretty jewelry or even make pretter things on my body make pretty noises as I walk. So if there's some way to both not be itchy and miserable and still feel pretty, oh so pretty...
... it's a bumpy stop and start kind of world.
Over time, I've started to regain some sense of style, trying to work around being allergic to a ton of fabrics and metals AND having pressure hive reactions to anything remotely tight.
It's a journey! I think at some point skirts made their way back into the repertoire. And a variety of different hoodies instead of a single slouchy one. And then... slowly but surely...
I'll call these pivoral realizations:
* if I am wearing thin pants underneath (which I typically am), then anything I wear over them doesn't touch the skin in a meaningful way. Skirts can be poly or rayon or whatever with far less consequence! Though definitely works best if the skirts are long!
* basic cotton t-shirts come in a lot of pretty colors and even prints, and the dyes don't seem to be a bother for me at this point. Cut the collar off and you have a nice off the shoulder entry that may or may not need to also be turned inside out.
* I can actually wear some blends! It's a little more experimental, but so far there are some clothing brands with cotton/poly blends that have mostly cotton and which I can wear fine. This seems like a little thing, but it's actually a little world shifting.
* Wrap skirts are not without their headaches, but they don't have elastic and therefore don't usually trigger hives.And silk sari wrap skirts are hypoallergenic as well as very pretty.
* I have a pair of cotton/poly leggings that drive me a little nuts to wear, but are doable (results on this still pending) for days when I want to wear short skirts.
* Rings bother me too much. Necklaces against the back of my neck bother me. I gave up finally on my garmin fit. But loose bracelets made of natural stones are cool. As are the little plastic glitter bracelets with glitter water inside. And I can wear necklaces over the back of my hoodie.
* Pins are easy to add and subtract and pull on all the expressive flair!
Anyways, it brings me joy to have some expression back in my wardrobe, even if my options are more limited than I'd like. The bracelets in particular are giving me some extra mileage (they make a wonderful noise when I jangle them and they're fun to play with too).
Thursday 10/12
A "busy" day out of the house. Meaning probably a total of two or three hours, but bear with me here, it was a lot.
It was... a morning.
First thing straight off, my phone went kerplunk, on the fritz, putting off the ritz, etc etc. Alas.
Not a complete digital armaggedon, but the screen doesn't work right or reliably anymore. Luckily it was still on waranty. Unluckily, nobody had a lightspeed drone to put a new phone immediately in my hands.
Because having a broken phone is straight up debilitating. Especially on a day where one must drive. Into downtown Seattle... gulp!
The internal workings of the phone were still functioning, so I reassured myself that all was not lost. Maps, the most important feature since Wheels, continued to function with the same variable accuracy as always.
I even made it to the location with extra time to spare. To spare on driving around in tears looking for parking and occasionally succumbing to epoxysms of existential despair, that is. Because parking in that area of Seattle is beyond the pits of hell.
This day it all looked good. I had already located a parking garage on google maps earlier in my mental run through (I dress rehearse going anywhere in Seattle multiple times, check the drive times several additional times, and generally prepare for apocalypse a few times before heading out). And it was open. And parking was actually available and... it had recently swapped entirely to Pay by phone.
Ok ordinarily not a terrible set up. Even convenient sometimes to somebody (I remain, at best, agnostic). But also seriously, no. I tried a few times to make it work, but my screen just wasn't functioning well enough. I loathe talking on the telephone but today I would happily have called a person and provided all kinds of necessary id numbers verbally. Ah well. Mid-screeching careen out of the parking garage, I saw a random employee and asked if there were alternative ways to pay. He said "sure" and told me to go to the next level and find the person at the stand.
I found a new parking spot.
There was no person. The person was a lie!
And so, I wandered around haplessly for a beat and got back in the car with little strangled squirel noises brewing in my larynx.
Found another parking space on the street, which immediately filled me with skepticism. Correctly, as it would turn out, since there were giant markings saying NO PARKING! WE TOW MOFO! on the side walk. Maybe they meant no parking on the sidewalk. I couldn't say. What I do know is that Seattle most definitely tows. I've lost a car that way before and don't want to try that again on a school day.
So I made a strange little tragic baby bird sob and got back inthe car yet again.
By some strange turn of luck relenting on me, there was in fact a spot with a pay-by-credit-car-at-the-kiosk set up. So I parked. I paid. Things were looking up. Still a few minutes to spare...
Revitalized with a sense of victory, I started off in search of the medical building. I remembered to lock the car. The key wasn't there. This was not the first time. Actually earlier before I set off I couldn't find my actual keys and this key was already out backup key. Ran back to the car and started poring through the crevices only to realize the key was in fact in my purse after all.
Started back out.
Realized I'd forgotten my mask (like the literal one, that is).
Came back. Found it. Locked the door. Left most of the carefully packed backpack I'd brought (with my own medical gown and water bottle because these things are important for me) in the car, realized this briefly and said "screw it" and kept walking. In a bit of a circle. I got a little lost. But eventually I somehow found the right floor and somehow found the actual doctor's office.
They were surprisingly expedient, and pretty soon I was meeting my brand new doctor! And I mean brand new. The chick is barely hatched. But she had on a nice (very gen z olive drab) sweater with giant flowers and her medical lanyard had two lapel pins that I fancied: a sloth that says "I like to go slow" and an anatomically correct heart.
She introduced herself to me "Hi I'm Doctor Doctor"
To which I - continuing to stare at her chest instead of making eye contact - blurted out in the sunniest voice chalk full of aggressive little UVA rays "I LIKE YOUR PINS!!!"
So that was a good start.
She then asked me to tell her about myself.
Panic. Crickets chirping only to pause to listen for pins falling from the sky.
I was unsure what she actually was looking for, but figured every other new medical professional always asks if I have kids, and it's probably useful to know I have a ton of allergies and mast cell issues. So I kept it short. Added I'd been an attorney too because everyone also wants to know what your job is. And also, professionals treat me with more respect when I admit I used to be one too.
And then I told her my current symptomatic complaints. She said, and I quote, "huh, not ringing any alarms for me. I'm not sure." Told me to keep a journal of symptoms and that was about that and check back in a few months. So... about as useful as every other medical quest involving tons of parking stress and panic!
Oh except she put in an order for bloodwork.
Bloodwork on a day like that?
I've been to the rodeo a few time. No way I was going to squeeze blood from the stones that my veins had become during the morning's torment.
I know this because the last few times I've been slightly stressed out or cold or most anything, it's taken thirty to sixty minutes on near constant poking and slightly accusatory "we're usually great at this. Your veins just aren't cooperating!" With the inevitable round of "did you have anything to drink today" (Yes! Like more than you drink all week!) So we will handle that nonsense on a more peaceful day.
Anyways, made it home, grabbed Allan's noise muffling headphones to block out the cat and the rest of the world and gradually recovered. Which was important because the outings were not over...
Only a few hours later, it was time!
Time for...
Allan's last day of OT, sniff sniff. Sarah is taking a position in the schools, for reasons like "health insurance' and "paying off student loans" and "paid sick time"... crazy, I know. I was worried this would be devastating to Ms Allan, since OT is one of her favorite parts of the week. It may still be, but so far she's been accepting. As long as we find her a new OT, which might be a bit more of a feat.
They played in the swing and took lots of pictures. It was, overall, pretty amazing. It's been a huge boon having Sarah in our lives and I'm going to miss her. Although I will also enjoy that extra hour and a half of quiet-house time, truth be told.
The night wrapped up more placidly although I was still a mix of buzz and bother warmed over a bit. It was... a long day.
On the bright side, my waranty claim came back to let me know that I'd get a new phone in about 8 or 9 days... really??
Thank goodness I gave Allan my old phone!
10/13 Friday
Started out a little spooky and ooky. Allan was off school so we did our weekend morning routine. Up at 6:30. A little dash of Choose Your Fighter. And then down for a movie. Today was Hocus Pocus. Sheer beautiful camp. Possibly the highlight of Friday.
Which was good because it was a Friday needing some preemptive highlights.
Friday had much more onerous horizons following...
Horror upon horrors: the optometrist.
On the bright side, Allan's excited to finally get glasses. And they're going to be so friggin' cute! On the not bright side... actually it's really bright in there and that's part of the problem.
When I first heard it was time to get Allan glasses, I knew two things: 1) that it would be a brightly lit, highly chemical environment with an indeterminate amount of waiting (allergies galore!), and 2) I was gonna be the parent to take her. Because that's how we divide things up. When these things are in the house or tele-therapy, easy peasy. I have a profound Allan tolerance and a little bit of a magic touch in that I am the only one who can keep track of the status of her labrynthine but mandatory routines.
But these particular outings are the parts that exceed my capacity a bit more decidedly.
I was good for the exam. It was smelly. And it was bright. And it's not always easy to help Allan follow the instructions they needed her to follow, but it was a bit of fun as well.
The real "fun" began after Allan picked out her glasses and said "can we go home now?"
Beacuse, actually, we couldn't. There was one technician in the store and only she was empowered to check people out.
She was also with a customer, a middle aged lady with her mom helping her. And that customer had an order that was far more complicated than a peace sammie in the middle east. I later found out the client had had several strokes and was high needs. This from her mom "apologizing" (maybe calling me out for my obvious impatience, I couldn't say) I don't fault her. But I can't control how it made me feel to be stuck in the environment with no understanding of when I would get to leave. And I'm sure I projected it a lot harder than I would have liked. Then again, I didn't have a flaming meltdown, so you're welcome everyone. that's a few more years off my life!
We ended up waiting there for about fifty more minutes inside the store part. Overall about a ninety minute appointment.
Which doesn't sound that bad when I read it.
But it's hard to describe. For me, well, I really wanted to scream and throw things, and also run away. I wanted to get out of there because the lights everywhere were hurting my brain and body, my KN-95 mask was burning my cheeks, my breath was making my eyes irritated, and the noises of other customers talking was joining together in this aggressive tidal wave of garbled cacophany. Sometimes it feels like that scene in Vertigo, where the camera zooms and pulls away at the same time..? Sometimes I'm not sure if i'm going to faint or just start yelling. I haven't yet, mostly (I did actually faint on a field trip as a teen because the walls were too white and it smelled like paint, but usually not)
Allan was in a bit of a lovely little luftmenschy space this morning, so it was hard to get out the door and it ended in an ill prepared rush. We didn't bring any headphones or earplugs. We didn't have any fidgets other than my keys. My phone wasn't really functional enough for stress browsing. And Allan was pretty ready to check out.
We finally ended up sitting in the middle of the floor, playing with my keys and making growling noises at each other. By that point I had my new shiny sunglasses on and my hat pulled as low over my face as it would go, which does actually help. This was soothing. The freedom to just be was helpful. I wish we'd done that sooner.
I won't be fully recovered from this for about a day. Maybe longer. And then I'm sure the rashy skin will set in. It's worse now with the chronic illness/exhaustion - my spoons are all now tiny porceline tea spoons from a doll set, at this point - but this sort of experience has happened to me at all points in my life.
I used to think I was just impatient. I was always embarrassed about my petulant ornery behavior. But seriously it's less patience than pain. It's the pain of the brightness and the noise and all that. And I can take pain when I know what to expect (when it's just your run of the mill pain I'm pretty well used to it), but when I don't know it's rough. And it adds up. And it wears on me to try to be polite and grown up about it.
When we got home I immediately started making lunch while the cat yelled at me. Not exactly soothing, but it was a necessary next step. Grumpiness is just kind of inevitable but a few hours reading and running my hair across my lips did wonders.
It's funny. I didn't even used to notice that I did this (the hair twirl and pull to lips), though my mom confirms I always have. I'm not eating it. I just like the feel. The motion and the texture. The dance.
It wasn't until I was at Summer Camp at 13 when a girl pointed it out like it was a bad habit she was going to cure with the powers of Jesus (we were at Christian Camp). I was a little self conscious, but it hardly seemed like some great sin, so I declined the exorcism. I learned to do it less, especially in public. But I still do it unconsciously through the day. My friend at college says it's why she decided we should be friends - the cutest most approachable little stim. Allan's picked it up. With a vengeance. I take one tuft of hair, she will double fist it. It's sweet. She'll then go diving for my hair, which admittedly hurts a ton and makes me antsy because i want to get back to it myself. Also there are usually some big handfuls of hair torns out in the process.
And I see it for what it is.
I remember when I had short hair. Which I loved, mostly. I found keeping my hands busy, but this is the "coming home" one.
In the last few years, I'm more acutely aware of myself doing it in a more positive way. I let mind embrace the sensations in my skin and the intricate movements of dancing fingers. I feel there's a delicacy in it like taking up a cello. The little flicker of movements all combined to create a silent music that plays through my bones. And this gives me unquantifiable droves of pleasure and comfort.
I can't do it as much as I'd like, because my fingers get tired and achy. So I measure it with other things like toothpicks and bouncy balls. But this is my homecoming and my indulgence.
When I'm in the outside world, I often can't. I usually wear my hair in a hat or tied under a scarf, because I don't need aerosolized allergens congregating in my hair. I am more likely to wear a mask anyways, because I don't really want covid anymore, sure, but also it helps with the smells. A lot.
Also when i wash my hair it's not the same. That's not why I tend to wash my hair less exactly (dry scalp is enough), but it is a liability I'm aware of.
And when I get back in the car after an appointment, it's an orgy of delight ripping my hair free and plunging my hands right in. That moment feels like that first moment of sip from an oasis. And it's big.
Which is to say, all in all, the day had some balance.
Allan asked me to read to her after I made us lunch. This was also exhausting but recently she's been watching cat videos with Andrew at bedtime, and inevitably this bleeds into mommy time and inevitably I don't get to read to her at night anymore, because she'll start screaming NOOOOOO when I come in to do so. So, I take the moments I can.
My mom came. They went out. I cleaned (mental health incarnate). Read a lil bit. Went on a walk. Watched some Loki...
Ended light headed and achy but on an upswing anyways.
Ready for the weekend and ready - oh crap not ready at all - for the downward slope towards Halloween!
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