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Scheherazade in Blue Jeans
freelance alchemist
First Editions 
26th-Jan-2015 09:01 am - How to ask
We're All Stories in the End
"Would you like to stay?" he asked, his hand on my waist and his eyes on mine.

His code name, for now, is Ten, due to his resemblance to David Tennant. It was his New Year's Eve party, after midnight, before one; I knew I'd have to decide soon if I was staying or leaving in order to catch the last train and bus if I was leaving. I'd lined up a ride home in case I wanted to stay longer. But honestly, I'd already decided that I'd stay if he asked. We met at sexy-exploration-welcome parties and had had a lovely time at the last one, but beyond that, he gave me and Murder Cat a ride to the vet and we had excellent conversation all the way there and back, and so I knew I really liked him and wanted to pursue this. We'd had a night full of fond looks and casual touch and people who didn't know me assuming we were already dating, which we weren't.

But this isn't about that; this is about how he asked.

Because he followed that question up with "If you decide at any time that you'd rather go, I'll pay your cabfare home."

Thus removing at a single strike any of the things that might have made me feel trapped and/or pressured there, if, after the last bus, after everyone left, I changed my mind.

1. Made me aware that he understood that consent could be revoked at any time and he would respect that.
2. Made money not a barrier to me leaving whenever I wanted.

He did not yet know that I was a survivor of sexual violence. This was just his baseline for interacting with people - this deep understanding of the multiple factors that could get in the way of enthusiastic consent, and the need to settle for nothing less than unimpeded enthusiastic consent. Getting home is not a problem, leaving here whenever you want is not a problem - given that, what do you want?

And there are other proofs, from that night and now others, but those are more private. And I haven't spoken of this because I wanted his permission to say how he asked (which I remembered to ask him for yesterday), and also because I've been enjoying being on this path with him and figuring out what that means between the two of us. We're a Thing. It is good. <3

And it really started that night when he showed how deeply he understood consent. How important it was to him.
21st-Jan-2015 11:52 am - Well that was a learning experience
Unable/Lack of spoons
My schedule was less jam-packed this year, so I was really frustrated with myself for feeling quite so run-down and spacey at Arisia.

Until I got home and stepped on the scale.

Oh. Under the weight at which my regular beta blocker dose becomes an overdose. I was pushing through hypotension for... how much of Arisia? Unknown. A lot.

The con itself was great! I only managed to attend three panels and a reading that I was not actually on, but honestly, that's more than usual at Arisia. Unfortunately, between that, the mandatory program staff office hours, the six panels and a reading I *was* on, and various time commitments to various people, I didn't get to actually hang out with people as much as I would've liked. Part of that problem is just that there are too many wonderful people at Arisia!

Balance. It's a process. And now I know that my #1 priority at cons has to be three square meals every day - scheduled. No relying upon the green room or grabbing snacks. Actual full meals. I've never attended a con this close to that weight threshold, but this does seem to be the weight my body's stuck on for now, so I need to be aggressive about keeping it up.

Anyway, all of my panels went well, my reading made people cry, and I had some awesome times. And thankfully my plans for yesterday got rescheduled, so I was able to take yesterday as a total rest day! Today I had an interview and am about to finally jump back into novel revisions. :)
15th-Jan-2015 11:11 am - Obligatory I'm Not Dead Post
Hearth
* I will be at Arisia this weekend! Whee!

* Partly I have been absent due to civil case stuff; a lot of the past two weeks has been focused on that, and next week will be as well, and can we fast-forward to the part where that's over and I can write everything I need to write about the experience and never have to deal with him again? KTHX.

* After I wrap up this round of civil case stuff I'll be able to go back to novel revisions, yay. I have been getting twitchy. This is the 15th day of this year and I still have not gotten even one hour of writing time. (Elayna returns to school on Monday.)

* I have had a lot of awesome surface in my life over the past two weeks in wholly unexpected, still-forming ways. I look forward to being able to talk about that.

COME TO MY READING MONDAY 11:30AM THANK YOU.
1st-Jan-2015 03:49 pm(no subject)
Figuring shit out
I've talked about 2014 being my Year of Being Brave; I need to write a good wrapup post on that! And the Year of Being Brave has changed my life. Brave every year from now on. :)

But I did something else, something more subtle, something I didn't talk about as much:

2014 was the year I stopped calling myself lazy.

It used to be a tired old call-and-response thing - "I don't/didn't do X, because I'm lazy." And people would say "You're not lazy!"

And I realized that this was true. It helped that people pointed out that wow, I actually do a lot of stuff. Scroll down to my Year in Shira writing/editing post, and that's just one aspect of my life. I am driven and efficient and I do a lot of things and I do them well! So why do I call myself lazy?

The best answer I have? Part internalized ableism (I don't have a day job because disability, so clearly I am lazy) and part internalized misogyny (I don't do a lot of Lady Upkeep things, so clearly I am lazy).

Neither of those is a good look.

So in 2014, I looked at that, and I asked myself "why am I not doing the things I'm not doing?"

And the actual answer was "Because I have limited time and energy, and that's not where I choose to allocate it."

Boom.

It seems simple, but that reframing helped immensely. Talking about hair dye? "I don't dye my hair even though I could because I'm lazy" becomes "I don't dye my hair because upkeep on that takes time and energy that I'd rather spend elsewhere." I'd like rainbow hair, but I like what I'm doing more. Maybe I'll get some clip-in rainbow extensions from Etsy.

"I didn't clean the house, god I'm lazy" becomes "I was really in the zone with my writing, and this novel is more important to me than my toilet bowl being spotless."

These are all choices. Time/energy choices. When I say "lazy", I'm not just disrespecting myself, I'm devaluing the totally valid choices that I've made, that I'm making.

Plus it is just not true.

So that is my challenge to you for 2015. What negative thing do you say to yourself about yourself? What story are you telling yourself that isn't true or fair to you? Find it. Nuke it from orbit.

"Be very careful how you talk to yourself. Because you are listening." - Pat Cadigan
31st-Dec-2014 01:39 pm - A better place and a midnight kiss
We&#39;re good. Yes we are.
I posted on Facebook yesterday, "The difference in my life from last December to this December is really huge and 100% positive."

I've been thinking about this a lot lately - turn of the year and all. But it was brought sharply into focus by two things, one yesterday, one a few weeks ago. The one yesterday? I thought "where did I go for NYE last year?" and realized that I had turned down all party invites and stayed home on Gchat with Michael. This year, I still don't know how many parties I'm going to make it to, but I am hella going out.

The other one requires a bit more unfolding.

I go to a lot of parties! Some of these parties have an element of friendly makeouts and the pressure-free option for more than makeouts. I actually want to write about these parties and the way they're sex-positive without the sexy element being intrusive for those who don't want to take part in that, and the nifty consent-culture rules; I need to write up a draft of that post and send it to the hosts for approval! The particular parties that are relevant to this topic happen... quarterly, I wanna say? Every few months. And last December's, there was some crappy weather, enough so that I didn't want to go without getting a ride. Which I secured.

And then Michael and I had the biggest fight we'd ever had.

We always fought over these parties. (This is why I was late to every one of them in 2013.) He did not want anyone else touching me, ever. I was fine with committing to nothing below the waist, but being able to kiss people and get touch-comfort was important to me, especially in the wake of Judah (Judah and I went to one of these parties once; he was petulant that I got more attention than him and insisted upon leaving early). I needed to be able to make choices regarding my own body.

But this fight was different, was worse; he had a complete meltdown. He refused to believe me that the weather was safe for driving. ("It's barely snowing," I said; "The Weather Channel says it's unsafe," he said, and I kept repeating the actual reality of the weather, and he refused to listen.) He wandered off from Lynne and the other people they were out with to yell at me. He repeatedly blamed me for upsetting him.

I finally got off the phone with him just before the friend giving me the ride showed up. I was visibly not-okay when I got in the car; my friend could tell. And Michael kept texting me, and I kept texting back, and my friend kept glancing over at me in deepening concern. Finally he said "Y'know, 'song..."

And I automatically responded with "He's not always like this."

And we both looked at each other in perfect horrified knowledge of the script we were reciting.

Because we know this script, we know it, we know that's what they always say, and I had not fully realized, until the words from the script flew out of my mouth, that that was really where I was. Judah hit me. Judah raped me. This wasn't that, so it had to be okay, right? Even if it was tense, even if things like this happened, even if things were always my fault, even if my fooling around made him angry so it was always my fault he was angry...

My friend just looked at me like "you know," and I looked at him like "if you love me, don't make me say this or look at this tonight. Just let me go and drink and kiss people and not have everything collapse right now in this car."

And bless him, he let me.

I hadn't thought about that in a year; more dramatic stuff was soon to follow, et cetera, and it faded. But the same friend gave me a ride to the same party this year. He looked back at me and quietly said "This is better than last year."

Another friend in the car said "Oh yeah, the weather last year!" and we all nodded, but I met my friend's eyes in the mirror, and we both knew.

Y'know, it was. It was all around. The weather was better, yeah. And good friends from out of state were there, and I was bold enough to make eyes at a cutiepie I'd met at another party, and we ended up all having delicious fun that it would be inappropriate to recount here without the permission of, um, a bunch of other people. ;) And the next morning, gizmometer and I Skyped with ashlyme and told them all about our night, and though we'd missed each other, though everyone wished ashlyme was there with us, they were happy for us; we were all happy.

(ashlyme was worried, when we started dating, that their anxiety would be a problem for me, after things with Michael. No. And there's an example of why. They missed me, but were happy for me. They did not scold or shame me.)

This has been a Year of Being Brave in so many ways. And it's been a year of freedom. It's a year of being accepted and respected by my partners - I looked very hard at everything before taking the plunge with beloved ashlyme, and to my relief and delight, they've been very, very good for me. <3 And so has everyone else. I've experimented... kinda a lot. Most of those experiments totally worked. One didn't, but in ways that gave us both interesting data, and we are still friends, so that's still a great outcome. (There is something oddly freeing about "Yeah, wow, that was a mistake for both of us! Fascinating. Still wanna go get a drink?")

Having my world kicked out from under me yet again in January gave me the opportunity to reframe, restructure, rethink, rebuild. I waited a while before becoming involved with anyone even long-distance, and even longer before becoming involved with anyone in person, because I needed to look to myself first and make decisions about what I wanted, what I did not want, what was best for me. And I've been fairly ruthless about cutting out the things that don't serve me. I joked recently that I turned a guy down for wearing those Vibram shoes, that's how picky I am!, but really, yeah, I will no longer cut off parts of my Self to be with someone. It isn't worth it.

And I am so much happier this way.

Adam wasn't sure I should write this, because it's me talking about the exes again, but: I have been carrying this, and if I never say it, I'll never get to set it down. And I want to set it down. I've had a fair amount of bullshit from people this year that's been directly attributable to the fact that I talked about a bad breakup amongst people who were pretending to be my friends. I never got the memo that we're not allowed to talk about our lives and about shitty things that sometimes happen. And I think the shame here should lie with people who play at friendship to get intel. Lots of people should look at their lives and look at their choices. It's helped me to do so.

Last December was bad in ways that I didn't have a handle on yet, because I was kept in crisis mode. This December? I had a great visit with my Florida family. That party was huge for me in all kinds of ways. The second issue of my magazine came out. I've revising my novel - you guys, I wrote a novel, I'm still chuffed about that. And I have a well-earned calm and happiness.

Last New Year's Eve, I stayed in. Tonight, I'm going out. I will wear glitter; I will dance, and I will have champagne, and I will have a midnight kiss.
30th-Dec-2014 01:55 pm - My Arisia Schedule!
Hearth
Agh Arisia is only a few weeks away.


Friday
7:00pm: State of the Muppets 2015
In the 25 years since Jim Henson died, there have been five Muppet theatrical movies, a TV series, multiple TV specials, and a series of YouTube videos. The Muppets themselves were also sold to Disney. While the renewed big screen success certainly speaks to the profitability, how are the Muppets doing creatively since Henson's death? Have they been well-stewarded, or used as a cheap property for Disney to exploit? What are the highlights and lowlights of the last 25 years of Muppet productions? (with ckd, Deirdre Crimmins, thespian, upstart_crow.)

Saturday
1:00pm: Unruly Places: When the Setting Does Not Behave
Streets that shift in the night, pathways that change destination, hills that certainly weren't there yesterday: some places just don't behave. What works of genre fiction have explored these unruly places? What stories can only happen where our rules just don't apply? (with cucumberseed, Elektra Hammond, Greer Gilman, Adam.)


2:30pm: The Girl's a Monster
What's a monster? One of the undercurrents in YA fiction is that the monster is a girl, and vice versa. All manner of supernatural afflictions have been coded to the maturation of young women -- if you're not a perfect little lady, you can easily be viewed as monstrous. We'll discuss monster as metaphor and how girls are claiming the title of monster as a positive signifier. (with Genevieve Iseult Eldredge, Jeanne Cavelos, Heather Albano, Kiini Ibura Salaam.)

4:00pm: True Detective
The first season of HBO's "True Detective" grafted a tinge of the supernatural onto its hardboiled story structure, and managed to create a nationwide frenzy over the works of Robert Chambers. We'll talk about the way the show played with genre tropes, and talk more generally about the show's structure, characters, and fascinating visual elements.
(with John P. Murphy, Steve Sawicki, Megan S. Markland, Morgan Crooks.)

7:00pm: Marvel Cinematic (and TV) Universe, 2015
In 2014, we saw *Agents of S.H.I.E.L.D.* and *Captain America: The Winter Soldier* deal with global corruption, while *Guardians of the Galaxy* took on Thanos and Ronan. As this panel takes place, we'll have Agent Carter on TV, with a Netflix Daredevil show hitting in May. We'll talk about where this increasingly complex and connected universe goes from here, and how things are looking after the last year. (with Heather Urbanski, Elektra Hammond, Ed Fuqua, Kevin Cafferty, Gillian Daniels.)


Sunday
4:00pm: The Arisia Curmudgeon Panel
Do you hate one of the holy grails of fandom? Can't stand the original Star Wars movies? Think the answer to "Kirk or Picard?" is "neither"? Want to revoke Peter Jackson's Oscar? Cross the street to avoid Browncoats? This is the panel for you! Expect a mix of vitriol, snark, and actual media criticism at this wide-ranging panel. (with Adam, Pablo Miguel Alberto Vazquez III, Mark Oshiro, Abby Hafer.)


Monday
11:30am: Reading: Lipkin, Salaam, Vanderhooft
Authors Shira Lipkin, Kiini Ibura Salaam, and JoSelle Vanderhooft read selections from their works.

Clearly Saturday you should bring me offerings of coffee and GF snacks. When not on panels/reading, I plan to attend a bunch of panels - Lit Track has some great stuff! - and I will be hitting the parties all night. :)
30th-Dec-2014 01:32 pm - The Year in Shira - writing/editing
Hearth
Copied from my official pro-type website.

2014 was actually the most productive writing year I've ever had - it just doesn't look that way from the outside! Since I barely wrote in 2012 and wrote nothing in 2013, I only had two stories actually come out in 2014, both written in 2014. Those are "The Final Girl" and "The Cartographer's Requiem". "The Final Girl" is now the story I point people to when I want them to know what exactly I write.

This year I wrote a complete novel, my first ever; I'm currently working on revising it, and then I get to wander around looking for an agent!

I also wrote a record five stories (I know, I don't write fast/often/much). Two were published (see above), one will be out next year, and two are on submission. I've written a number of poems, mostly for a chapbook project that's not close to complete yet.

I also made my nonfiction debut with "Israel is Not My Birthright" on Salon.com.

And fellow poet Mat Joiner and I started a magazine! Check out the first two issues of Liminality: A Magazine of Speculative Poetry.

I had a lot of reprints this year!

* "Becca at the End of the World" was reprinted in Zombies: More Recent Dead, and it received an honorable mention in Ellen Datlow’s Year’s Best Horror!
* "Wool and Silk and Wood" was reprinted in The Best of Electric Velocipede.
* "The Angel of Fremont Street" and "Fortune" were jointly reprinted as The Selves We Leave Behind.
* "The Library, After" was reprinted in Mythic Delirium #30 and The Nebula Awards Showcase.
* "Valentines" was reprinted in The Mammoth Book of SF Stories by Women.


And what's on deck for next year? Look for "Never Chose This Way" at Apex, "Four Chambers" at Mythic Delirium, "The Binding" at Lakeside Circus, and hopefully I'll be able to tell you more soon!
22nd-Dec-2014 10:47 am - Liminality #2!
Hearth
NS_GuardiansBlueHr

The second issue is here!

Go read!

Our ToC:

“Entreaty” – Sandi Leibowitz
“The Haunting” – Lev Mirov
“The Martyr of Baikonur” – India Valentin
“Entwined ‘Neath Stars and Empty Suns” – Merc Rustad
“Pentimento” – Charlie Byrd
“Ada” – Kit Hamada
“The Sirens’ Song to the U.N. Security Council: Monday, July 10, 2017” – Cindy Potts
“The Leningrad Philharmonic Orchestra” – Thomas Zimmerman
“Hypnos and Thanatos: The Embrace” -Lynette Mejía
“Auspicious” – Joshua Gage
“The Lark, The Peat, The Star, and Our Time” – Neile Graham


(The rest of my day = cleaning, packing, etc. I have a series of meditations on this year that I'll be writing up, but for now: magazine!)
9th-Dec-2014 09:01 am(no subject)
Hearth
Every time I pause to write here, I ponder, and I think "my thoughts on that are not complete yet".

Which, from the outside, must look like absence when it's more like heightened presence.

So. This post is an ask-me-anything, in case there's anything you were wondering about.

Anonymous commenting is on.
6th-Dec-2014 12:56 pm(no subject)
Hearth
Copied and pasted from e-mail, why I might blow off my sleep doctor appointment Tuesday. Additional context: Not only is doctor useless, doctor is leaving this practice in three weeks, so honestly I have no idea what could possibly be accomplished by another meeting.

Brief version: I have terrible insomnia and haven't slept without aid since 2006. Trying to get to the bottom of it so I can stop being chemically dependent.

Sleep doc: "We're gonna test for apnea."

Me: "I had a negative sleep study in 2010, and none of my partners have ever reported any snoring."

Sleep doc: "Okay but we're gonna test for apnea."

*home sleep study*

Tech: "Yeah, you don't have apnea."

Sleep doc: "Okay we're gonna do this other test for apnea."

Insurance company: "...yeah, we're not gonna approve that because she pretty clearly does not have apnea."

Sleep doc: *comical shrug*
Boston
Signal-boosting for wired_lizard - her house, not mine!

(But mine is walking distance from hers so that's cool.)

Originally posted by wired_lizard at PLZ HALP: Housemate needed in Watertown, MA, by January 1
URGENT! I am looking for a housemate here in Watertown (suburban Boston) starting January 1. Geek house, queer-friendly, a well-furnished and well-established household in a great location. Rent is $920/mo. including electricity, internet, and gas; does not include heat. More below the fold.

Please, please, please link and circulate this, email it to anyone you know who's looking, etcetera! Due to some setbacks out of my control, I'm starting this housemate hunt on the late side, and I'd really like to have somebody lined up in the next two or three weeks. Send me a message here on DW or LJ, or email me at arkady [dot] lizard [at] gmail if you're interested!

DetailsCollapse )

This entry was originally posted at my fandom journal on Dreamwidth. Please comment there if possible.
1st-Dec-2014 09:10 am - Updateish?
Hearth
I have a bunch of things that are all sort of pending, but I haven't updated in a while, so!

* CT results in brief: I do not need emergency cardiovascular surgery at this time. Good! I need to call the doctor's office after this post to make an appointment to talk about next steps and also get my flu shot.

* Liminality just finished its second reading period, and we are delighted.

* We have heat now! Got it the Thursday before Thanksgiving. Very relieved.

* I've been putting off revising the novel because I have no idea how to revise a novel, but I need to get on that. I am starting today: re-reading with a red pen in hand.

* I blinked and apparently I have been dating someone for two months as of tomorrow? Man, he really needs a code name.

* (And Mat and I have been together for eight months today.)

* Bash's eye is looking better, but he still needs near-constant medication. That wears on a body.

* Every Thanksgiving is the best Thanksgiving yet.

* Check out yendi's LJ for all your shopping needs, BTW; using those links means we get a little Amazon credit for each purchase.

And it is time to call the doctor, then get to work!
25th-Nov-2014 10:53 am - So
B5: End in Fire
I'm with Adam here.


Originally posted by yendi at So
I went to bed last night before the Ferguson lack of indictment was announced. But I can't say I was surprised. Disappointed, but not surprised. Between the decision to announce at night and the gathering of police, it was pretty obvious that they were not going to indict Darren Wilson, and that the local government was doing its best to make the situation as awful as possible (The Onion's pre-decision headline, "Heavy Police Presence In Ferguson To Ensure Residents Adequately Provoked," was dead-on).

As Newsweek noted a few months ago, prosecutor Robert P. McCulloch pretty much sides with the cops every time. And as just about everyone has noted, damned near any prosecutor can get a grand jury indictment. the famous quote by Sol Wachtler about prosecutors convincing grand juries to "indict a ham sandwich" being pretty accurate. Of course, as 538 notes, cops are the exception. It's almost like they're a protected class, allowed to abuse the law with impunity. If you prefer more right-wing sources, here's Reason noting the same thing. If you prefer less integrity-driven right-wing sources, National Review is all over things arguing that cops are the victims here. I won't link to their bile.

I'm disgusted and disappointed and horrified and angry. And (as Colleen Lindsay noted), the very fact that those, and not fear, are my emotions is about as much of a sign of privilege as anything.

Doing a rare thing and disabling comments here; between work and other stuff, I don't have a lot of web time today, and frankly, there are plenty of places for folks to have a conversation if they want it. Take care of yourself.
19th-Nov-2014 11:46 am - Oh, Bash.
Bash
Bash, whose nickname is Murder Cat, apparently has a corneal ulcer caused or exacerbated by ocular herpes!

Yeah fun.

The kitty opthalmologist said he's almost certainly had flareups in the past; we adopted him at age 12, so... *shrug* He has some thinning of his cornea and may develop cataracts, poor giant jerk kitty.

He has a lot of medications.

* Serum eyedrops 4-6 times a day.
* Ofloxacin eyedrops 4-6 times a day.
* Terramycin ointment applied directly to the eye 3-4 times a day.
* Atropine ointment applied directly to the eye once a day.
* Buprenex in his mouth twice a day.
* Lysine chews twice a day.

If you see me this week, hug me. And bring band-aids. Because medicating him is exactly as fun as you think it is.

(Also, DAMN, $600 in the past few days for this cat.)
17th-Nov-2014 09:13 am - Obligatory eligibility post
Typewriter - tell me about it
Not much this year; I wrote nothing in 2013 for reasons, which overlapped with barely writing anything in 2012 for Judah-reasons. So no poetry this year (unless one of the two pending poems comes out in the next month), and just two short stories.

"The Final Girl".

"The Cartographer's Requiem".

I like the latter just fine, but the former's where my heart is, if you've a mind to pick one, and if you haven't read it yet, I hope you do.

(As far as the Rhyslings, let me point you to Liminality! We'll have another issue out on the winter solstice (which we are reading now for; submit!), so hold off on your nominations til then. :))
16th-Nov-2014 11:35 am - General catchup
Hearth
* We have been without a furnace for over three weeks now. >.> The part that failed was installed in 1961, and apparently there were structural and safety concerns. Landlord and contractors went back and forth on repair vs. replacement for a while until the contractors flatly refused to repair ("we don't wanna get sued"), so the old furnace was hauled out on Monday, and they've been working on installing the new one all week. They're down there right now. A lot of stuff needed updating, apparently. We're managing with a couple of space heaters and electric blankets. It's been good to save money on the gas bill? But we will really appreciate warmth when we get it (hopefully by the end of the day tomorrow).

* Poor Bash has a scratched cornea! :( This apparently works out totally okay with application of topical antibiotics and atropine, sometimes, so I am squeezing things directly onto Murder Cat's eyeball 4 times a day, which is exactly as fun as you think it is. He has a follow-up at the vet tomorrow at 3 - anyone local available to give us a ride? Adam's out of town, and Bash HATES being confined - bus is a possibility, but takes much longer than car and I worry about Revenge Shitting.

* My full-body imaging will be this Thursday. Wish me luck!

* I've mostly been posting recommended long reads on Facebook; feel free to friend me there or just pop over and look.

* Liminality is halfway through its reading period for our winter issue! Send us poems! Tell your friends!

* I need to write a post about me and dating, because I have a lot of big thoughts about how my needs and desires have been affected by recent relationships and have shifted just within the past year. In the meantime, I am dating someone local now apparently! and have two first dates in the next two weeks. Fascinating.

* Holy crap Thanksgiving is coming up soon. This is a very fast year.
13th-Nov-2014 03:49 pm - Mutation
Jewish Mutant
Enough details are emerging around the edges that it pretty much makes no difference whether I say what I have or not at this point, so: my mutation is on COL3A1. That's Ehlers-Danlos Syndrome type IV, vascular, aka vEDS, which is what I'll be referring to it as because otherwise that's a lot to type. La la la more links.

We were already looking at EDS due to the hypermobility, but in addition to fitting so many of my physical oddities, vEDS also explains why I don't have other common EDS symptoms, like the stretchy skin, and why my hypermobility is not as extreme as many EDS folks' - in vEDS, there's less of that. Instead, our blood vessels are stretchy/fragile.

So the Major Complication in vEDS is aortic dissection or aneurysm, which, if you're not feeling clicky today, basically = blood vessels go boom. This is why the median life expectancy is 48, because aortic dissection is so frequently fatal.

And that is why having this data is a GOOD THING! Because aortic dissection is pretty low on the differential diagnosis for the ER docs, re: otherwise-healthy-looking patient presenting with severe pain. If I or whoever I'm with can tell them "look for this first," that can potentially buy enough time to save my life. There are advances in medical science. Fewer people die of aortic dissections now than did ten years ago.

80% of people with vEDS have had An Incident by age 40. I'm not kidding when I said that going on beta blockers in 2005 almost certainly saved my life. It's funny, with all the problems with my brain and guts, we never looked at my cardiovascular system again after I got an accurate-but-incomplete diagnosis and got on a medication that worked right off the bat.

If you want to read through the links, you'll see the lists of things I'm not allowed to do, which I won't reproduce here; just: if I say "I can't, doctor's orders," please believe me.

The further testing I'll be getting is full-body imaging, to see if I have any blood vessels that look especially fragile. If I do, we may opt to do some surgical intervention, replacing bits with artificial blood vessels or stents. I say "may" because surgery is very risky for people with vEDS, so it may not improve my prognosis to do surgery. Depends on how strong my cardiovascular system is overall.

So that's where stuff is.
11th-Nov-2014 03:19 pm(no subject)
Book Love - by RoseFox
Today I finished Atul Gawande's latest book, Being Mortal. I love Gawande's work - he has a stunning compassion about him, in the way he writes about medicine. I first heard about the new book via this excerpt, which is worth reading to begin with.

I'm a fast reader, but it took me a while to finish this book. Not because it was bad or difficult! Because it was just exactly right, and I kept setting it down and thinking about my own end-of-life decisions, running scenarios in my head, pondering choices I've had the luxury of not pondering quite so much in the past.

I know what I want to happen after I die. I know that I want my body donated for cadaver dissection - my organs will not be useful for donation, and that's a way I can still help. I read and loved Body of Work: Meditations on Mortality from the Human Anatomy Lab by Christine Montross years ago, and it resonated with me. So: that. My remains will be of service, will teach someone who can use that knowledge to help other people. Then I'll be cremated, and Adam will get my ashes, and he'll give some to anyone who wants some, so people can sprinkle them in their favorite places. In the meantime, my wake should be a party.

Studies have shown, unsurprisingly, that people reevaluate their priorities when they have a finite amount of time left. I went through this a little when I was diagnosed with epilepsy. I'm glad I did, because it's prepared me for now, to be able to handle current stuff with grace instead of panic. Mostly. More grace than I might otherwise have had.

Median life expectancy of 48, is the thing.

My doctor prefaced that with "this is a bad one," meaning my particular mutation. And ended by pointing to the report and saying "This is not your story. These numbers are not your story. You're writing your own story."

I am waiting on further testing. Full-body imaging, to see how much to worry, as I've said, and if I need or should have surgical intervention. And I have a list of things not to do, which unfortunately rules out some of the Year of Being Brave stuff I wanted to try; the sudden drops in aerial silks would be a problem, for instance.

So I adjust. And I sit with myself, and I think.

What is my best possible day? What is my best possible life?

I don't have a conclusion for this yet. But not talking about it was wearing on me. So.
7th-Nov-2014 03:24 pm - It's good to be right?
Spoons
Still not talking about Monday's results, but there's this:

I spent a few weeks massively fatigued and light-headed, with that just-can't-get-started feeling all day. This coincided with the weird neurological event, which was shortly after massive stress that caused my weight to drop again, from ~107 to ~101.

An unusual thing about my doctor visit for the neurological thingie - he was walking another patient out and saw me, so he fetched me back and we went straight into discussion. I had my vitals done after he left, so he never saw that my blood pressure, usually 100/70, was 85/55.

And at my neurologist appointment the next week, it was similarly low - and my heart rate was 60, which is atypically low for me. And I was highly stressed at the time, because new neurologist. So it really should've been higher than usual.

I was brainfoggy enough that it took me like another week to put this all together, then call my doctor: "Hey, my meds were prescribed when I was like 130 pounds. I'm at like 102 right now. I think I am overdosing? Because these things are all symptoms of extreme low blood pressure and relative bradycardia? Even possibly the seizure-ish thing?"

Which was nerve-wracking, because I'm already on a very low dose of the beta blockers - if that was too much, the next step would be cardiac ablation, and even a little heart Procedure is scary. But! I have managed to put some weight back on, and I am back to "normal", and my doctor agrees that I was totally right.

So. I just can't go below ~105 ever again. (Not that I want to.)

Semi-related, and related to Monday stuff: it is actually quite possible that I'm alive today because I've been on beta blockers since 2005. So hey thanks big stressor of 2005!
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