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I was undecided about doing this, but I feel the need to share my thoughts on the OTW election, now that I've read and thought extensively. People I love and deeply respect have made thoughtful and eloquent and true arguments for competing outcomes, and I'm sure it goes without saying that the position I'm taking in this post doesn't diminish that love and respect (or desire to see the heartache of this past week recede) I feel for all of you.

First, no matter what - really, truly, no matter what - we are all on the same side here. We are all in this together. We are a beloved community, and we only care enough to fight because we love. [personal profile] kass posted today about [personal profile] lim's classic vid Us, and I like the idea of watching it, taking a deep breath, and remembering how much love went into building this community of fandom, and this organization. I believe the OTW has a long and bright future ahead, and I'm so happy to see the level of caring and (renewed) engagement the community as a whole is showing through these election debates.

I want to talk a bit about running a small nonprofit, one that's very heavily reliant on volunteers. I'm on the board of one such organization right now, previously served on another, was on the steering committees of two more, and am part of a lay-led small synagogue collective. I've worked for and with small nonprofits, been a volunteer coordinator both as a job and as a volunteer myself, and seen many orgs both thrive and fail at various stages of development. That doesn't make me an expert by any stretch (and I've made plenty of mistakes), but I think I can speak to some of the challenges of a small, growing, volunteer-dependent organization and its management.

One of the key things I'd pull out from my experiences is that it's dangerous to allow any one (or more) super-volunteers, no matter how talented and dedicated, to shoulder an unusually large share of work for a long period of time. This isn't just about hit-by-a-bus redundancy, but about long term sustainability of a volunteer corps that can grow to scale with the organization. After a time, that person's contributing that heavily becomes part of the embedded and assumed structure, and entirely unintentionally actively deters other people's new involvement. Not only because many possible roles are being filled by one person, but because it's intimidating as hell to think that's the kind of dedication required when you're first thinking about walking through the door. If a person is allowed to do superhuman levels of work, they also become irreplaceable, which is not healthy for the growth of an organization.

An organization in startup phase is a very special kind of beast )

However, there's a point in organizational development where it reaches adolescence. At that point, it's no longer helpful to long term growth or sustainability to depend intensely on any one person or people. Every super-volunteer who takes on as much as she can stand becomes a lost opportunity to create an opening and mentor in new volunteers to take on gradually increasing amounts and responsibility levels of work. The more concentrated decision making power is - at both the policy and the day to day level - and the more concentrated the "who shows up to make it happen" power is, without explicit conscious effort to move in the other direction, new volunteers are actually being discouraged, and existing lower-contributing volunteers stagnate and feel their energies are not being well-used.

One of you mentioned in a post supporting Naomi's candidacy that if something needs doing, she is the person you want around, because she is the one who will step up to do it. That is one of the things I admire best about Naomi and everything she has done for fandom, but it's also why - right now, at this critical point in the OTW's adolescence - that is exactly the wrong kind of person the organization needs in its leadership. At least, when it's a person who has already been that deeply involved from day one, and especially when it's an increase from current already high levels. Because if Naomi steps up to do it, then we will always be depending on Naomi to keep stepping up to do it, when what we really need to be focusing on - though it's harder - is finding the women who will be the next Naomis. And right now, we have four of them, fresh and eager to serve.

This is the point when I believe the best thing a founder can do for an organization is to step back from the day to day management level stuff as much as they can. And not just to allow new leadership to develop and flourish! It's also because doing that frees up the founder to become all sorts of new kinds of resource to the org )

Right now, the OTW's biggest challenge is that its volunteer recruitment and development process doesn't scale, and neither does volunteer management and retention. It's a system optimized for scarcity - because in the beginning, it had to be. But because it still presumes scarcity, that's what it gets. It's optimized to find a few deeply dedicated souls, and allow them to give as much as they can until there's nothing left to give.

That is no longer healthy for the organization. Odd as it may seem, to receive more in the end, this organization needs to ask some of its most giving volunteers to give a little less, or a little differently. (Not just Naomi - no one coder should shoulder the workload Lim was doing, and I'm sure there are many more superheroes I don't know about.) Very few people can sustain the kind of amazing, laudable intensity of effort that Naomi has put in. So long as the org is structured to encourage contributions like hers has been, talented and dedicated women will try to be superhuman, burn themselves out, and leave disillusioned.

On the board I'm on right now, we met with a consultant who specializes in nonprofit boards and getting them through the transition from a small, informal org dependent on a few to a grown-up nonprofit that has long term sustainability. One of the things we learned is that we - high contribution committed volunteers all - needed to find ways to slowly scale back the number of hours a week we gave to the org. We needed to be constantly challenging ourselves to look for community members to delegate to. Asking ourselves, is this a board-level task, or could someone new be trained in? We needed to be proactively looking, proactively asking for people with the particular skills we need for concrete projects and tasks, and talking to people we know are supporters to see what they might be able to help with that we didn't yet know they could do. We've been trying to have one on one conversations with all our contributors, and we've asked people to tell us how they want to help us, what they see as their special skills to contribute. That community is also one where we tend not to talk a ton about what we do in our professional lives, so it's been wonderful to have people who are grantwriters and financial managers and lawyers and editors and even nonprofit managers come out of the woodwork eager to serve. What we've received from that, in the past year, is really amazing. A year ago, I never would have expected it. I had no idea there was that much untapped desire to help in the community. The hardest part has turned out, at least for me, to be letting go, handing off my projects to new people.

That is my hope for the OTW in this next, pivotal year. Give the visionary founder space to do founder-level tasks no one else can. Give new, eager leaders on the board space to develop themselves as managers and to develop the leaders they work with on committees. Focus hard on broadening the base of people on whom the organization depends. And remember, no matter what, that every single one of us is in this because of love.
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StarTrek.com posted a fan survey being done by anthropology professor Daryl Frazetti, and I took it, and it seems good and worth taking. The prof isn't a bigshot or anything (never heard of his uni, CSU Channel Islands), but he seems sincere, ethical, and a fan himself. I read his informal survey results paper for his 2010 survey, and it felt very fan-friendly, fanfic-friendly, female-fan-friendly, and that he in general gets it.

The survey | The results of the 2010 survey | His guest blog post on StarTrek.com

So, while since I don't know the guy I can't *endorse* his work, he seems unlikely to commit sudden SurveyFail or anything. Also, the 2011 survey is pretty brief, only a one-pager that took me about 5 minutes to fill out.

***

Unrelatedly, my household is seeking a new housemate. We have decided to stay where we are for a new lease year and re-shuffle the rooms so that there are 3 bedrooms, a living room (former dining room) and a reading/TV room (formerly the ex-housemate's study), and put the dining table in the kitchen since we so rarely use it for more than one or two people at a time. We're happy to plan another year here in large part because the difficult downstairs neighbors are leaving. And since their noise primarily impacts my bedroom, it shouldn't affect the new housemate. We've had several responses to our ad and are seeing a few people this weekend, but if you or someone you know is looking in Somerville, you can point them to our ad (our post on the Davis Square LJ community).
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So, Muskrat Jamboree last weekend was excellent. I went into the con feeling utterly devoid of physical and emotional energy, and I came out of it feeling refreshed and re-energized and alive. Definitely got many more spoons from being there than it took to go, despite the sleep deprivation and many-people intensity of a con. The one thing I might have done if I'd been more spoon-ful was go to the drag show, but I'm glad I took some down time before our room's Doctor Who party.

The sonic screwdrivers, btw, were excellent. We simplified [personal profile] shihadchick's recipe, just doing vodka + blue curacao + ginger ale, but it was very tasty and had a lovely blue LED-esque color.

Anyway, I can highly recommend [personal profile] ellen_fremedon and [personal profile] cinco as roommates. And [personal profile] sanj, for the one night we got her as a bonus :D. I'm not even going to try name-checking everyone who I met and adored, or squeefully reconnected with. Not gonna try any panel write-ups either. But it was a very good long weekend with people of my tribe, and it made me feel smart and happy and engaged and excited and squeeful and liked and all sorts of other excellent things.

It was also cool that, when [personal profile] mindyfromohio and Ellen and Cinco and I were leaving the hotel, we randomly got to catch about an hour of a collegiate Quidditch game on the Boston Common. They were very well-organized, and the game seemed to be pretty well evolved. I reminisced about how [personal profile] chris created the first non-magically-or-film-special-effects-enabled Quidditch for Nimbus. And I believe he was the or one of the people who modified it for The Witching Hour and future cons, too. Not sure how directly the version we saw draws on that, if at all - that's one of the weird parts of being in such a mainstream fandom. The Snitch was human, with a detachable "tail" to be captured, and the bludgers were soft-looking dodgeball-style bounceable balls. Hula-hoops on stands for the goals, and I think everyone but the Snitch and maybe the Keepers had to keep brooms between their legs all the time too. It was awesome. I'd run across this before, on a couple other weekends last summer, but never been able to stop or even go get close enough to see much at all.

Also I want to recommend the place we had lunch on Sunday, The Dumpling Cafe, on Washington St. near Kneeland in Chinatown. There were these interesting "buns" that were actually soup-filled dumplings. And I really ought to get to Montien (Thai place) more often than once every 2 years on the Saturday of MJ, as is my current developing pattern.
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I came on DW with the intent to make a deservedly whiny post about how January-depressed I have been, coupled with unemployed-depressed and with some honestly shitty things happening in my communities, and feeling like I was at one of those points where you're just going to break if you can't make yourself cry and get past it, and plus the cat was being a real pest. Then I read my past 2 weeks flist, and now I feel better, and I don't want to whine anymore, so you're all in luck. And, thank you.

There has been some shit. I want to declare war on pancreatic cancer, which in horrible painful ways took two different people I cared about in the past month. One was my best friend's father, and was a year to prepare for, and still sucked like hell, but I've made peace with it. The other was a fellow dancer, and there were only 3 months to prepare, and there are no words for how wrong it is that she's not around anymore. Her death was a total shock to me, just days after I'd found out her prognosis, and I'm still not processing it, even though honestly I was never particularly close to her. I just loved her as a member of my beloved community, someone I'd always enjoyed being around and talking to, and she'd had to miss dance camp for several years because of life stuff, but she was going to go this summer, and now she never will, and that's when I hit the wall of rage. So yeah. I want to declare a war.

There's been some other stuff that's on the mild-suck level, so far, and that I'm mainly handling. Things like that because of the new tier of unemployment I'm on it's taking ages to process so I've had no checks this month, which means I'm a lot more broke than I should be. And that getting switched from COBRA to the MA public option has taken a lot longer than I thought, so I'm in a gap in coverage for the first time ever, which is freaking me out. My dad slipped on the ice and broke his elbow and had to have surgery, and I'm just telling myself, *do not slip* even though I know if I needed the ER it would get covered retroactively eventually.

I do have good things though. My therapist is being awesome and letting me keep seeing her on a "we'll get this paid for when we get it paid for" basis, which is <3. And [livejournal.com profile] crschmidt got me a nice fun contract position that's very part-time, which is exactly what I need to be still on UI and have time to be applying to jobs, but also to feel productive and make some cash and have something to say I've been doing workwise again. I hadn't even thought Congress would extend the UI at all, so that too is a good thing, delays notwithstanding. Also, I have a lead to a good resume coach, who has helped a friend start getting actual calls and interviews after her own long drought, so all in all I'm pretty hopeful too.

The other weekend was Golden Festival. I want to tell you about it because people don't really get why, on MLK weekend when there are *two* amazing geek events in Boston (Arisia scifi con and the MIT Mystery Hunt), I shlep to New York. But it's like a slice of camp in the middle of the worst time of the year, and it's everything I needed. Even if I got the con crud after - that's what dancing with 2000-odd people while not sleeping much over a weekend will do.

Golden Fest was in a new venue this year, the unreal, out-of-a-storybook over-the-top awesome cheesy wedding cake of a venue, the Grand Prospect Hall in Brooklyn. (Which, ridiculously, I am now the Foursquare mayor of, which is just a disgrace to Brooklynites.) The hall is AWESOME. The main hall has room for at least 600 or 700 people dancing, plus tables and stuff, and is ringed on the upper levels by balconies from the top 2 floors. And there are several more smaller ballrooms and stuff. The festival had 4 concurrent stages on the main night, Saturday, and it was crazy trying to choose between it all.

David Byrne from the Talking Heads was there, which some of my musician friends realized during but most of us didn't know til after, which is definitely how he wanted it. He blogged about it, and complimented my friends' group Black Sea Hotel, and that was seriously cool. You should definitely read his blog post, because it also has photos of the venue and embedded videos, and gives a real sense of the awesomeness.

Friday night had the feel of a really excellent normal festival. Just one stage, and great energy, but it ended by around 1:30. The friend I was staying with had come along but gotten tired, and I enjoyed being able to *take a still-running subway* back to the Upper East Side, and then to get myself a croissant at a *still open bakery* at 3 am when I got there.

Saturday night had the real feel of camp, the level of epic fun and the degree of crazy lateness. After the festival ended I went with a group of mostly Brooklyn-living musician and dancer friends to a bar that had maybe 5 people before we got there and then maybe 60 after, and they shut off their music and let us play and dance. And then we went down the street to a diner and took over the whole back area. I got back to the UES at 6 am. It was truly awesome.

One random highlight: At one point the Raya brass band, all of whom I'm friends with, had their room so packed they were able to get people crowdsurfing. I'd never seen that at a *folk music* event. I actually didn't end up staying in that room long even though they're an excellent band and I adore them, cos I was still desperate to dance rather than moshpit in the crowd, but it was great nonetheless.

Those of you who live in NYC, next year I swear I am going to bug you all about checking out at least the Friday, which is cheaper and less intense for a newbie but still made of massive amounts of win. If I ever moved to NYC, it would be because of things like this. Not that I plan to, but I could see the appeal for the first time in ages of having access to these bands every week instead of a few times a year.
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I saw HP7.1, with several of you & later with my parents. (Sometimes I forget that some of the folks I spend lots of time with locally I originally met here, because of HP - that's the gift JKR gave far beyond the books themselves.) In general I quite liked it and found it very well done. It may be my favorite apart from PoA, which is in a separate class really. Some aspects were less awesome than others, but overall I was pleased. One small observation I haven't already seen in everyone else's reaction posts yet: Tom Felton has finally aged into the degree of pointy-facedness I expected of Draco from the beginning. I'd disliked his casting, way back when, because he was so baby-faced, but maybe they were going off older male relatives of his or something, because the guy is finally much closer to my own mental picture of Draco. So that was a big plus, and almost made up for the travesty of Narcissa's hair :D.

We did Thanksgiving at my brother's condo near NYC - for the first time this year not going to my parents but rather having my parents be the ones making the longest trip! It was a nice way to shake things up. My mum is often sad if it's "just" the 4 of us at Thanksgiving but this way she saw it for the increasingly rare and special thing it is. I also realized that even during the years one of my older (half)sisters lived in the same city as us, I don't think I ever spent a Thanksgiving with her, which now feels really odd and makes me want to make sure I do that sometime. My sisters live in Arizona with their kids and partners and spend Thanksgiving at their mum and stepfather's; their stepfather is Mexican and they like to have holiday meals early, so they tend to do something bizarre like turkey fajitas for breakfast. But I'd still go.

My brother and I planned a lot of the menu and finally took some of the stress (and control!) off my mother. She appreciated it and I think our point that a holiday need not mean she spends it all in a frantic craze of work was made and well taken.

I also ate some of the turkey. I'd been thinking of stopping being vegetarian for quite some time now, for reasons I may eventually elaborate in a longer post of its own, once I've seen how this experiment in omnivority works out, but that boil down to health (desire to minimize dairy & carbs, need/desire to minimize gluten which rules out seitan, need to avoid soy for thyroid reasons, need to maintain better-balanced blood sugar, desire to avoid processed food like fake meats, even the few non-soy ones) and environment (turns out legume farming is more environmentally destructive, as practiced now, than local sustainable pasturing of free range organic meat & birds). I felt that I was looking at a diet of mostly non-local, unsustainably farmed legumes, nuts, and eggs, as my protein, and that just wasn't going to cut it for a life. Nevermind that as a vegetarian, though I've never talked about it, I've never really felt un-hungry after a meal unless I ate more than I thought I ought to have needed, and only ever felt satisfied if I'd had a mass helping of carbs. Which, while I've also never spoken about it, is something I've suspected contributed a lot to my constant gradual weight gain as an adult.

A recent wave of coming-out of being newly omnivorous in the vegan blogosphere, and many very intelligent posts about why, helped support me in making the leap. Especially Tasha of Voracious Eats, whose post was the first I saw and which really encapsulated it all for me. And she's been chatting with me on Twitter now too (she is @redfeminist) which is awesome and great for moral support. For the record, I plan on only eating meat & fish that I feel has been raised and prepared ethically & environmentally, so when eating out it'll be mostly veggie still, with maybe more fish depending what the Monterey Bay Aquarium says (they have an iPhone app!). My brother and I also watched Food, Inc., in the middle of my discussing all this with him the night before Thanksgiving, which solidified my resolve on the whole thing.

So my brother bought a free range organic etc. turkey breast, I helped prepare it, and after much (much!) wibbling, I ate a few bites. It was weird. I didn't *enjoy* it per se but it wasn't bad either. It tasted *exactly* as I remember it, despite not having eaten turkey since 1995. It did settle better in my stomach than most anything else in my recent diet has, which was what I'd hoped. Earlier this week I ate some salmon, which those of you on Facebook may have caught the pic of being posted. It was good but very intense and rich and heavy, and I think maybe a little more than I'm ready for as yet. I tried to eat the leftovers later and couldn't make myself get through more than a token amount. I'm going to stick to poultry for a while I think, or less rich fish. I've no idea if or when I'll be up to red meat. I always enjoyed ham but not steak. I do miss lamb and always have so I will likely try that again if I can find a local enough and free range etc enough supplier.

In other news, I am not panicked but am trying not to think about my pending loss of both unemployment benefits and COBRA health insurance at the end of the month. I should be able to get onto the Massachusetts basic health plan, but it may mean I can't see my normal doctors til I do find a job where I can go back to my normal insurance. I am working on piecing together contract work to get me through the interim. I actually have made some great contacts (including one in NYC over Thanksgiving weekend) that give me a lot of hope, but it's daunting nonetheless, and something I'm rather exhausted of doing.

A related and timely video from the AFL-CIO that everyone in the US should share around. And then talk to their congresscritters.

Lastly, Happy Chanukah! I found some really great candles at Whole Foods of all places this year, and they're really brightening my evenings.

Two fun Chanukah songs that have been in my head & you've probably already seen: Matisyahu's "Miracle" and the Maccabeats' "Candlelight". And a bonus completely unrelated kitten cuddling a teddy bear as your reward for reading this far!
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You guys know about how Balkan music & dance is one of the defining passions of my life, right? At least you do if you've known me long - especially when I go to music & dance camp every summer.

A film collective in NYC is working on an independent documentary about a brass band (whose members I'm friends with) and their relationship with the small town in Serbia where they attend a brass band festival.

Here's the trailer for the film - it's not anywhere near out yet, but I wanted to share a taste of this part of who I am. I'm not in it (though at camp this summer I did get filmed so there's a slim chance I could be seen in the finished product) but many people, and definitely songs, that I love are. Check it out.

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I was reading the very interesting post at ontd_feminism on LJ about the It Gets Better project its problematicness in ignoring the many very real ways that for a lot of queer kids, especially queer kids also facing other oppressions, it doesn't always get better. That's an important critique, and one I agree with.

In the comments, though, some people are arguing that there is NOTHING about being a teen that gets better when you turn 18. [livejournal.com profile] tacky_tramp argued that one specific thing does get better, namely that a kid becoming an adult gains the legal right to control over their life, because in that one way childhood itself can be considered an oppressed class. People pounced on her, asking things like whether this means parents are oppressing their toddlers by not giving them steak knives. Really? Can't we have a nuanced discourse here? I mean, I know it's ONTD, but still.

I'm not yet approved as a member of ontd_feminism, so I can't share my comment there. But it bugs me enough to want to say it somewhere.

There is a very real difference, unacknowledged in most of our laws, between the ages of childhood in which it is nearly impossible for a child to know what is best for them (ie toddlers), ages when children can sometimes know what's best for them but generally don't have the maturity to act on it or distinguish that from other simple wants, and late childhood ages (adolescence) when children are in many cases the best arbiters of what is best for them, but are also going through developmental crap and maturity crap, and still in some cases really are not ready to be full adults. I have long believed that we should have some more nuanced laws around these distinctions of childhood. A teenager should not be legally the same as an infant, in terms of the rights they have in opposition to their parents.

All of this is assuming, of course, parents who have the best interests of their kids at heart, which isn't necessarily true regardless of the age of the kid. And for parents who believe that a kid's best interest is in being prevented from being/acting queer and going to hell at all costs, or whatever their personal issue with queerness, they have every legal right to do everything they can to break their child, apart from repeated and provable physical abuse, until that child turns 18 or runs away or believes they have no way out and takes their own life.

I don't believe the argument here is that it is oppressive for parents to deny their toddlers extra ice creams. The argument is that, when one is a teenager (the target audience of the video project), it's possible to be stuck in a legal bind in which one is not being actively abused in sufficient enough ways and with enough regularity and enough provability for the authorities to intervene, and yet the child doesn't have enough legal rights of their own to make their own choices to get out of that situation. The way out is to turn 18, and so stop being in the legally restricted class of people who are not yet adults.

I realized this gets a bit long, so it's cut tagged )
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If you haven't seen these yet - you really need to.

Top 12 Harry Potter Themed My Little Ponies.

My favorite is the Firebolt.
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It's been far too long since I regularly read my Dreamwidth flist, and I really have been missing it. Even though many (though certainly not all) of you I follow on Facebook or Twitter as well, it's just not the same. Plus, I'm trying to cut down on Facebook due to their constant asshattery.

So, this is just to announce that I'm actually trying to be around here again.

My life update: Still unemployed. Starting to be less (emotionally) OK with that mainly because Congress keeps screwing with extensions on UI, which is very insecurity-making. And that I really *miss working*. I have been doing some volunteer stuff but I miss the structure and productivity and socialization. Other stuff has been ups and downs, and then a bunch I really want to take time to get into, but don't feel like now, though mostly good or neutral.
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I posted this to the Hulu forums on SGU but decided I'd share here too, though I honestly don't know how many of you are watching SGU. I have many more thoughts on this show, but this is what I've got to say in this post. I think the next SGU post will be about what I think of all the characters overall, who is most interesting, which actors will be the most fun to fan, and who might be most interesting to ship.

Spoilers through 'Time' aka most recently aired ep as of right now )
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I keep holding off on making an update cos I keep wanting to have some Actual Information to share, but enough people have been asking, and knowing that it's going to be the first thing people want to know has made me hold off posting about *anything*, and that's just getting ridiculous.

I still don't know much, except that it's unlikely anything truly serious is going on. I finally learned last week that I do have a thyroid nodule - this knowledge courtesy of an ultrasound I'd been lobbying to get for 8 months, and my fab new primary care doctor's willingness to order one. The nodule is probably what's been causing my thyroid pain for the past year and a half. However, it is probably not what's causing my still larger-than-normal-person level of fatigue. I also had a sleep study, but with inconclusive results.

So, my next steps are to meet with another endocrinologist. I fired my last endo after he refused to give me an ultrasound in February and in July, when I asked for them, and told me that there was no way I had a nodule because he couldn't feel it on an exam and because I didn't have thyroid antibodies active. I'm kind of inclined to write him a nyah-nyah letter once I know more, just to let him know that his refusal to give me an ultrasound put me 8 months behind in treatment. Anyway, hopefully I can convince a new endo to give me a fine needle biopsy, just so I can be *sure* that this nodule isn't evil, and then we'd decide whether I live with the pain (which most of the time is no longer such a big deal), or what.

On the fatigue front, I may still end up trying a supplemental dose of T3. T4 is the thyroid hormone that's replaced by my medicine, and T4 medication is supposed to help your body build T3, the other thyroid hormone, but sometimes it doesn't. My T3 levels are OK, but my new primary care doc, who is also a thyroid specialist but not an endo, thinks a supplemental dose might help. On the other hand, I may also have sleep apnea or another sleep disorder, despite the inconclusive result of the sleep study, so I'm going to need another sleep study. Regardless, my fatigue is much better than it was before I had my T4 balanced, so at least I can function normally, just with a higher need for sleep.

In general I feel vindicated, because since this whole thyroid thing began - in February of 2008! - I've had 2 different former primary care doctors and the endocrinologist all tell me various versions of nothing was wrong with me, and that there was no possibility I had a nodule. I only knew to push for an ultrasound because I found an article in a medical journal online (I could only access the abstract) about how some nodules are small enough they can only be discovered by ultrasound, and another several articles about how thyroid pain usually indicates a nodule. Each of these three former doctors insisted that nobody gets thyroid pain, that it's not a symptom of anything, that it was probably psychosomatic, that if it existed it was probably unrelated to the thyroid, etc. I kept getting told "Huh, well, that's not supposed to happen!" when I asked if maybe we shouldn't look into the pain just in case it was a symptom of something.

I'm frustrated as hell that if my first doctor had listened to me from the start, I could have had this much information a year and a half ago. Of course, since she refused for two months even to test my thyroid hormone levels, and then refused to give me medicine even though my levels were not in the normal range, I know now that I shouldn't have expected much from her. She was also the doctor who told my then-employer that I was malingering, which didn't help me any. My second primary care was nice, but she offloaded everything to the endocrinologist. The endocrinologist did get me up to an appropriate T4 level, but it really pisses me off that he clearly didn't know enough about thyroids to see my pain as an actual symptom or to take it seriously. He first saw me in September of 2008; he should have ordered an ultrasound then. Or when I practically begged him for one in February or July '09.

Anyway, I'm not stewing over this or anything. I just feel like I'm in limbo. Because I have believed that I have a thyroid nodule for most of the past year, the ultrasound results I got last week don't actually yet tell me anything new, they just confirm what I already knew from listening to my body. There's a slim, slim chance that the nodule could be malignant, but if it is, thyroid removal and recovery is relatively simple compared to other tumors. There are much greater odds that the nodule is just a result of the inflammation from the intense flu that started all this back in late January of 2008. In which case, living with and managing the pain and hoping it continues to fade slowly over time is totally fine.

In the meantime, I need to keep looking for a new job and thinking about longer-term career shifts. It's tough to do that when I don't know if I'm going to need to take time for thyroid surgery or something in the near future, or when or if my fatigue issues will consistently improve. I know I could work a job if I had one, but I feel weird pursuing longer-term career goals without better knowledge about my health.

I've learned a few lessons from all this, which I feel like documenting & sharing:

1) Always get a flu shot. Because sometimes the flu can really fuck you up. The current theory is that my genetic history made my thyroid predisposed to problems, so that when the flu attacked it, it was easily damaged (and more permanently than many viral thyroid issues). I have no idea if I'd have developed hypothyroidism on my own if I'd never had that flu.

2) Be ready to fight for what you need when dealing with the medical establishment. You are the expert on your body and its symptoms. If a doctor tells you you're not experiencing something that you are, indeed, experiencing, don't wait. Fire that doctor and get yourself another one, and if necessary yet another one after that. Don't give up until you feel satisfied that your experiences are being taken seriously. Enlist help if you are too ill to do this yourself.

3) Seek information and doctor recommendations online, especially on patient support forums or on websites for associations of doctors who work on your specific problem. For example, I've learned a lot from thyroid.org. Talk about your problems openly if you can, because people will come out of the woodwork with their own experiences and advice. I've learned so much more from the internet and friends with their own thyroid problems than I did from any of my doctors.

4) Be willing to live with ambiguity. None of us ever know that we are 100% healthy. Any one of us at any time could have a hundred different things wrong just waiting to be triggered and rear their ugly heads. Thinking about that is no way to live, though. It's tough to accept, but it helps a lot to remember that none of us is truly secure, and yet we all manage to get by anyway. Despite TV shows, a lot of the time doctors don't come up with a solid cause, not for months or years or sometimes ever. Not knowing what's wrong sucks, but it's where a lot of folks with medical issues are.

Anyway that's where I am. Most of the time I am pretty darn good, except for when I'm not, you know? I feel really hopeful in having some confirmation about the nodule, and in having next steps at all, and I'll let folks know when I know more. Expect a non-health update before long.
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I continue to do well in most things despite the ongoing job hunt and am keeping good spirits about everything in my life.

The main news though is that my thyroid has been having issues again over the past 2 weeks, so I've been needing a lot more sleep and thus not around as much anywhere I want to be. Also, thyroid pain again, worse than it's been in some time, which is not fun. I get test results back Wednesday and hopefully will have some idea where to go from here on the pain and what it may mean (the fatigue should be easy to treat just by upping my synthroid dose). I'm pushing for an ultrasound. I'm kind of at the point where if my meds aren't always going to suppress the thyroid enough to keep it dormant and not hurting, I almost just want to have it removed and be done with it. My biggest concern about that idea is that there's some minor risk to the vocal chords, and I care about preserving my singing voice, but it wouldn't stop me from surgery if it's the best option.

I just want this whole chronic illness phase of my life to be over, and I had thought it was, so to have a resurgence is aggravating. It's also made me uncertain about being aggressive in my job hunt when I may need to go in for who knows what in the very near future. I mean, last night I *dreamed* about being tired. And today I had an evening meeting literally across the street from my house but for a while there I wasn't sure I'd end up going, since apparently the paltry errand running I did yesterday had me wiped out. That's just not on. My endocrine system FTL.

Anyway, I'm still emotionally good, enjoying my free time and my apartment and my cat and my friends, and I'm not even actually nervous about whatever I may learn healthwise. I just want to move forward and get on to new things. Hopefully, that will be very very soon.
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I haven't been around much the past few weeks, mainly because 1) I took a trip and 2) I moved apartments. In brief:

Trip: You wouldn't think a person who's unemployed would need a vacation, but I really did. I was depressed, constantly slipping into being nocturnal, just feeling overwhelmed. Even once the stress of finding a new apartment and signing a lease was over, I still felt like I should be spending every waking moment applying to jobs, and of course that was counter-productive and made me miserable. Then a good cheap option for flights came up, and so I decided to go visit my sisters & nieces in Phoenix. And then it turned out I could also go visit [personal profile] smallness and another relative in Raleigh/Durham without the flights costing more, so I did that too, and managed to see a few friends while I was at it. I really needed it - I've been much more productive ever since I got back, felt a lot better. And since my sister L got laid off the day before I arrived in Phoenix and I just happened to be there for moral support, it worked out. Plus, I got to help one of my nieces study for her French & Bio finals, which brought back fun memories and reminded me of things I'd long forgotten.

Oh! And while in Phoenix, I got my ears pierced! I'd never done that, and had always meant to have my sister L go with me if I ever did, so it seemed like the right time. I wanted needle piercing, not a mall store gun piercing, so we went to the tattoo parlor where my brother-in-law gets all his tattoos. They did an excellent job, less painful than a blood test with no pain at all after, and it's healing perfectly. I can't wait to experiment with fun earrings. I also am hoping that earrings will help people perceive me as a little older/slightly more put together - it's frustratingly hard to be taken seriously as a woman when people read you as in your early 20's. It totally shouldn't be that way, but since I *am* 30 I'd rather read as at least 25, darn it!

Moving: I have long been a compulsive pack-rat, raised by pack-rats, and I had always had a really hard time getting rid of anything I thought I might ever need or be able to creatively re-use. But I was really feeling the weight of all that unnecessary stuff. My best friend from elementary school came out to visit and for 4 solid days we sorted, organized, threw things out & recycled & bagged stuff to donate. By the time we were done, I had taken a storage unit worth of stuff in the basement and condensed it to 4 bins of archival papers & CD cases, and some jewelry & clothes to keep. I ended up with a massive trash mountain stretching the entire length of the sidewalk in front of the house after the move - though to be fair some of it was from my other housemates' trash. We also filled up a car trunk & backseat with stuff to donate, plus more that had to go in a second trip. It was deeply liberating, to the point of feeling like a physical purge - it felt like I had been ill with too much stuff and finally broken free.

Now I am still unpacking in the new place, which I LOVE. The landlord is (for a change) local and responsive, the place just *feels* like home, and even the cat likes it better! Plus we are closer to the subway. I really love my new room, and I love knowing that it isn't going to be full of crap when I finish unpacking. Also, who'd have thunk it, but it's a whole lot easier to unpack when everything you own was packed after being sorted & categorized! I am unbelievably lucky to have such a good friend to have helped me get to this point, because all the intention in the world doesn't make this kind of purge easy to do on your own. I am now hoping to pay it forward by helping a local close friend clean up her stuff at her parents' house.

I also had a couple job interviews in there. The most recent one I am really crossing my fingers on because it would be super cool, amazing work with amazing people. Please think positive thoughts for me!
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So, Dollhouse ep 12 ("Omega")? OMG. I need to babble, but I also want all your reviews, everything you've read, every last detail, rumor about if it's being canceled, leads on campaigns to get it not-canceled, everything. I'm ravenous.

I've heard that the ratings for this ep continued the trend of worsening each week. IMHO that's because FOX screwed up the demographic to target (when your commercials aim at the fratboy hornball demo, and they show up and see a show about morality, all the sex involved in that morality doesn't keep 'em), and because TV execs STILL haven't figured out that the audiences for niche shows like this aren't the same as the Nielsen families. We watch on DVR or Hulu cos we're used to consuming media on our own terms, and we're the type who buy the DVDs and the merchandise. The way you make money off us is different. And you wouldn't think it would be so fricking hard to measure our engagement.

Anyway, the episode. spoilers ahoy )
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Ok, so I saw Star Trek last night, and of course I have reactions. I also want to hear all of yours - links please! Links to reviews you've read! Everything!

Here there be spoilers )

Also, your Star Trek icons, I can haz them? Now that I'm a paid Dreamwidth user, I want to use my icon slots! (I'd have gone for a seed account if I, yaknow, had a job, but long-term loyal paid users will help DW in the long run so I don't feel too sad.)
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I ended up writing a long-assed comment riffing off of ideas in [personal profile] treewishes's post about this ep, so go read hers so this will make sense, though I've quoted a few key points inline.

Here there be spoilers )
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I'm enjoying today, even though I didn't wake up early enough to do one of the things I'd planned (attending a user group leaders summit at Microsoft; I did go to the informal happy hour last night tho :D). Sitting with the windows open, listening to Genticorum, contemplating what to do this weekend:

* Somerville Open Studios!
* My havurah's yard sale tomorrow
* Writing job applications
* Visiting a friend on Long Island who just broke up with her boyfriend

Larger question I'm also contemplating: Would I rather focus my job applications on communications stuff, or on events planning? I love both, am good at both, and would really prefer a job that lets me do a bit of both, but the current postings make it pretty clear I'll have to pick, at least short-term. Of course it could be moot, and situations could pick me, but I'd like to have a better understanding of my own preferences & goals.

Also on my mind: Trip to visit [personal profile] smallness and then my sisters & nieces mid-May, and MOVING to a new apartment (with a local, responsible, non-crazy landlord) on June 1. And my cat, because he is wonderful and sort of always on my mind.

Lastly: I'm posting this on Dreamwidth & (automagically!) crossposting to LJ. If I haven't found you on DW yet, I'm elements both places. I may still have an invite code free if you're seeking one, also. I intend Dreamwidth to be my primary journal-home from now on, but if you're not intending to use it let me know so I can be sure still to follow you on LJ.

W00t!

Apr. 19th, 2009 02:44 am
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Yay, Dreamwidth is reality! I have nothing to say but explosions of squee.

Next order of business, importing the Livejournal account (how?) and finding my friends/circle here. Someday, maybe even archiving past accounts here, too. Then I could delete the old LJ ones and only use LJ for davis_square and fatshionista, and folks who won't yet be migrated here. I feel like I have a home back, even though I've just barely moved in.
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I've given up on the idea of summarizing the past year-ish before I post; to heck with it. I met a lot of lovely people at [livejournal.com profile] muskratjamboree this past weekend, and promised them I'd actually write in my LJ again, so here goes :).

Ok, so 2008 was pretty much the oddest year ever. Mostly because I spent most of it pretty darn sick. The thyroid thing that I thought was on the mend over the summer came back full force in September, and I eventually had no choice but to take a disability leave from work while I got better. If you ever want to know about thyroids, I am so your girl. And if you have unexplained debilitating fatigue and a doctor who insists everything is fine? Fire the doctor and insist on seeing an actual endocrinologist. I wouldn't have made it through sane without the awesome support of many friends, colleagues, and housemates, and especially [livejournal.com profile] ivyblossom, who encouraged me to demand seeing the endocrinologist and pretty much held my hand (virtually) through the entire thing. I could write lots more on it but am inclined to just let it lie, but I'm very open to talking about the experience to anyone who's interested. I definitely learned how to be my own medical self-advocate.

In 2009, I got back to work, but only briefly. We soon learned (as we had long expected) that my project's funding was lower this year than last, and it became pretty clear that at least one of us would need to be laid off. I was happy to have it be me; and with excellent benefits I am not (yet) very stressed about it. My last day was a week ago. It was kind of sad, in that I'd been at the same center for 4 1/2 years and had a lot of amazing, formative experiences, but leaving the job doesn't mean I've left the community. A week into the full-time job hunt, and it still feels like this is a good thing for me.

My housemates and I are looking for a new apartment for June 1, after a series of increasingly absurd repair issues (including 17 days where we had water issues and sewage in the bathtub and in which I camped out at [livejournal.com profile] aquaflame16 and then [livejournal.com profile] mindyfromohio's apartments). Yeah, that was fun! Actually, it kind of was, in terms of extended slumber party fun, but still, it was nice to get home, and it'll be nice to move to a place with a hopefully more responsive landlord.

Also, I got a cat! (After the 17 days couchsurfing incident.) He is a rescue, 12 years old, super sweet, and in the 2 1/2 months he's lived with me has completely captured my heart.

Right now I'm typing on the free wifi at the cafe at the Albany Amtrak station, on a long dinnertime layover, while on my way to family for Passover. Missing my cat already! Happily [livejournal.com profile] thebostonreader can easily take care of him while I'm gone, and I will be back Saturday night, but I've never been away from my cat for more than a night since I got him.

I solemnly swear I will update at least once more before the month is out. Feel free to make fun of me if I don't. :) And if you want to see more of me on a more regular basis, I've been much more active on Twitter.

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