naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Default)
CW: pregnancy, miscarriage, other uterine antics.

So I've known for a while that I had Asherman Syndrome, where the inside of my uterus was covered in scar tissue.

And that answers, maybe, one of the questions I had -- why endometriosis?  Well, I read the other day that sometimes AS can cause it.  If the AS was bad enough to seal off a pocket of my uterus, isolating some endometrial tissue and preventing it from exiting through the cervix as it should, it would have flowed back out of the fallopian tube and carrying that tissue into my abdominal cavity where it could then set up shop and start ruining things.  Given that, when I tried to have the Essure implants placed, Dr. Thundercunt couldn't even see the opening to one of my tubes, this seems pretty plausible to me.

But there's a question I have that I forgot to ask the doctor about, and it's nagging at me because I've never had an answer for it.  Why did I develop Asherman Syndrome at all?

Endometriosis can cause scarring both outside and inside the uterus.  So that may answer how the scar tissue got there.  Maybe it's the opposite of my theory above.

But uterine scarring also usually causes lighter periods, which is not a problem I ever had.  I had medium to very heavy ones, often for much longer than a week and sometimes continually for months.  I initially spent something like a year and a half bleeding because I didn't want to have to go to the doctor for it, and it continued off and on for years -- right up until I got fitted with an IUD six or seven years ago.

What caused the initial heavy bleeding?  

Was the fact that I ignored it for over a year why I developed scarring?

Did I have a miscarriage that went awry somehow?  I might have been pregnant after the first time I had sex.  The likelihood of it is higher based on the fact that there was no birth control involved except for him pulling out.  But it's also lower, given that I was on my period at the time.  But I remember sometime right around then I passed . . . something.  Kind of like a blood clot -- big enough that I remember it still, after all these years.  It was the size of . . . I don't know, a largeish bantam chicken egg.  I don't remember if it was before or after.  I want to say after, but I don't remember it clearly enough.  It could well have been before.  But if that's what it was, could it have led to some sort of low-grade infection that then led to scarring?

My mother had tremendous problems, herself.  Multiple miscarriages between having my sister and I.  And every other uterus-bearing person in my immediate family has had problems.  Endometriosis, PCOS, undiagnosed horribleness, whatever, always something.  So maybe it's just an inherited inevitability. 

How does my thyroid play into all of this?  What about the recurrent nabothian cysts I was having all over the place, where did those little shits come from?

Googling for all of this is a terrible pain.  Especially the Asherman Syndrome.  Almost all the information on AS is about infertility, and is geared toward fixing it enough so that people who want to can carry babies to term.  Finding information about whether miscarriages cause AS versus the other way around has proven nigh impossible.

I'm truly grateful I'm not navigating these questions in that context.  I feel genuinely terrible for people that are in that position and I'm glad that there are so many communities out there helping share what little information there is and supporting people through their journeys.  I'm not wishing that information to be less available, but I do wish that the information I dig up on every single issue a person can have with their uterus didn't focus on its effects on fertility . . . to the point where other information is sometimes not even presented.  As if, in the absence of a negative effect on pregnancy, people won't still want answers.

If I had been told that Asherman Syndrome can lead to endometriosis, I would have looked into the issue years sooner.  Unfortunately, Dr. Thundercunt, who discovered I had it, refused to talk to me about it after she booted me out of her clinic for swearing and having a panic attack, so I never had a chance to learn this from her, and none of the information I was able to dig up online at the time mentioned it.  (See: the aforementioned focus on fertility, to the exclusion of all other effects of a condition.)

I'm going to take a close look at my records once I get them and see what they found during pathology.  Maybe that will answer a little of it.  Or maybe it will just give me more to wonder about.

I realize it's of minimal impact given that the organs in question are ashes in a landfill by now and I'm not suffering psychological upset from losing them -- quite the opposite, frankly.  I know it's not really materially important that I have these answers.  But I've had such trouble with it my whole life that I can't help but wonder.  What started it?  Could it have been prevented?  At what point could it have been diagnosed, if my doctors had been worth a damn and I hadn't been so fucking put off by their treatment of me?  (Given what I endured, I can't blame myself for not trying harder for answers.)

Otherwise, I'm doing well.  Hormone replacement seems to be working just as it should.  No pain for days now, though I'm still sticking to my lift limit when I can.  I just want to be sure, you know?

I'm happy with where this has gone.  Really happy.  But I'm always going to wonder what the fuck was wrong with the goddamn thing.
naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Default)
I will have more concrete answers in a couple of weeks when I get my copy of the surgical and pathology reports, but wow, there was so much wrong with my plumbing.

My ovaries were apparently covered in cysts, one of them had some sort of benign fibrous tumor clinging to it, and my uterus itself was full of scar tissue and another sort of benign growth.  That's all IN ADDITION TO the endometriosis that had plastered rogue tissue all over everything.

NO GOOD WAS EVER GOING TO COME OF THIS NONSENSE.

I'm so glad to be rid of all of it.

I feel fantastic, btw.  Not, like, back up to 100%, but easily at 95%.  Only time will tell how many of my nagging little aches and pains and abdominal issues were being caused or exacerbated by this horseshit.  I can say that there was a particular sort of pain I was getting on a regular basis that was not IBS and not gas pain, and which has not yet chosen to reassert itself.  I believe it was cyclical bleeding from the endometriosis, but it may have been cysts on my ovaries as well.

I doubt this will free me of the IBS, but hopefully this will help that, in addition to utterly eliminating the actual obviously uterus-related issues I've been having all these years.
naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Default)
I feel kind of like I did after Orlando, only it's a more pervasive kind of helplessness, and this time I feel actual fear.

I sit down to do something creative, and 95% of the time I can't do it.  I just don't feel it.  I'm having trouble concentrating on anything.

I sit down to try to write something hopeful and encouraging and the words are just stuck.  Not that I feel like there's no hope, far from it, but I know that people are really afraid and hurting right now and it will take time for them to be able to see it.  I don't know what I could say that could make a dent.

Love each other.  That's all I have to say.  Love each other, and stand up for each other, and do what you can to help people who are not like you whenever you can.  Be a presence for one another, now more than ever.  And please . . . find a way to get involved.  Volunteering, donating, being present for your friends who are affected by this.  Think small-scale, if you want to.  Throw some money toward someone's top surgery.  Buy someone affirming clothes.  Buy groceries for a needy family.  Make phone calls for someone who has trouble with that.  Go to the store or ride on public transit with someone who feels afraid.  There are so many opportunities to help, once you look.  So whenever you can, be the helper that Mister Rogers told us all to look for.

And take care of yourselves, okay?  You are needed.
naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Default)
The birds they sang
at the break of day
Start again
I heard them say
Don’t dwell on what
has passed away
or what is yet to be.

Ah the wars they will
be fought again
The holy dove
She will be caught again
bought and sold
and bought again
the dove is never free.

Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That’s how the light gets in.

We asked for signs
the signs were sent:
the birth betrayed
the marriage spent
Yeah the widowhood
of every government –
signs for all to see.

I can’t run no more
with that lawless crowd
while the killers in high places
say their prayers out loud.
But they’ve summoned, they’ve summoned up
a thundercloud
and they’re going to hear from me.

Ring the bells that still can ring …

You can add up the parts
but you won’t have the sum
You can strike up the march,
there is no drum
Every heart, every heart
to love will come
but like a refugee.

Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That’s how the light gets in.

Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That’s how the light gets in.
That’s how the light gets in.
That’s how the light gets in.

-- Leonard Cohen, Anthem

I was going to post this song as the only response I could think of to our situation right now in the US, and then I heard.

He joins Prince and Bowie now, dead at 82.
naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Default)
So I had it done, and it was pretty awesome.

Bottom line, I'm having almost no pain at all, which is uncanny. I'm a little tired but not too much so.

There was endometriosis, so the surgeon took everything from the cervix up, including my ovaries. Some of the endometriosis was on the back of my uterus, which may not have been helping my IBS, but only time will tell.

I made this recording a couple of days ago. Not much has happened since then except that I feel damn good, better every day, and am beyond shocked that things went so smoothly and continue to go so smoothly.

Check out this picture of me in my flowery cat ears and listen to my longer account, or scroll down for the transcript.



Read more... )
naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Default)
The surgeon and her office staff have been nothing but astonishingly friendly, patient, helpful, and kind.  And responsive.  I get answers to my questions in what feels like no time at all.  (Same day, usually within an hour, often immediately, and not after days and days.)

A shocking change of pace from the halfassed bullshittery I've endured from the cheapass poor-people-and-addicts general practice clinic I had been using before just switching all my shit over to the family clinic associated with my local Planned Parenthood.  (I have yet to see how useful that one is.  Probably not very, although they will at least treat me personally with respect, and they were kind enough to refer me to this surgeon.)

I'm honestly amazed I am being treated this well.  I'm part of an underclass, and with every layer you add, it only gets worse.  AFAB, LGBT, mentally ill/disabled, poor, fat....  All of those are things shitty professionals can and will latch on to so they can justify their shitty behavior.  So being treated with actual respect has become surprising.  That is very sad.  And not my fault, though sometimes it really, really feels like it is.

We'll see if this level of respect extends to the hospital, I guess, which is one I've had traumatizing experiences in, but that was many, many years ago.  I'm still anticipating having to fight to keep them from assaulting me, but I'm aware that's most likely uncharitable and at least I'm only going to be there overnight.

It says a lot, though, that the only thing that would make me feel totally safe is bringing a weapon with me, and/or preventively physically attacking someone so they know not to fuck with me.  Like, on some visceral level, I want that.  I never would do it, and besides that it wouldn't work even if I did, and I'm aware that just the desire is unbalanced and unhealthy.  But you know what?  I didn't sign up for whatever discount version of PTSD this is, so I refuse to feel guilty for my thoughts.  I'm working on it in therapy, but that takes time, and I'm under no obligation to anyone else to rush that process.

(YOOOOO how about no stories about how y'all were mistreated by medical professionals!  I love you all!  But right now I don't need that sort of thing buzzing in my head.)
naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Default)
 But surgical horror stories? Not super-reassuring.

I was really close to calling and canceling yesterday, but it was after office hours and since then I've had a chance to medicate and blow off some steam and I'm okay for now.

Just . . . please consider your words.  Okay?  I know I have a badass reputation but I'm 10% chill and 90% raw nerves right now.
naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Default)
I'm having a hysterectomy on the 17th, theoretically.  Provided everything goes to plan and I don't lose my nerve, which feels like a distinct possibility.

Half the videos I've seen have been like "...they sent me home from the hospital twenty minutes after I woke up and I punched eleven wolves that same night!" and the other half have been like "it's week 273 and I'm still probably dying."  Neither of which seem at all reasonable.

I'm having minimally invasive super-futuristic robot surgery, so it's a much lighter recovery, but I'm still scared of it being utterly unbearable.

The truth is that while this is a thing that 100% needs to happen at some point, doing it right now is kind of optional, and because it's optional, if it winds up being a terrible experience I'll have nobody but myself to blame for it.

And of course people aren't helping.  They're like "As long as you're careful not to [do X really simple and vital thing] and don't mind [X intolerable symptom] you should be fine!"

Uh.  If you say so.

Or "Oh, it's not so bad after the first six weeks!  Most of the pain is gone in six months to a year!"  Are you fucking kidding me?  NOTHING short of averting immediate, impending DEATH is worth that.

The surgeon is, of course, very excited about the prospect of getting to do her thing.  And assures me that it won't really affect my sexual functioning.  I'm having a hard time getting medical personnel to understand that I like big toys and I like rough sex which means I sort of treat my vagina like a Bag of Holding and will be disappointed if I can no longer get the snot fucked out of me for fear of busting a literal seam.

I'm sort of concerned they think that because I'm with a woman there's no dick involved, when there are, in fact, several feet of very high-quality dick involved.

And, insult to injury, a resource I keep getting directed to, Hystersisters dot com, is grotesquely and rampagingly cissexist.  Like, I'm maybe 15% dysphoric about my body, gender-wise.  I'd characterize myself as "resigned."  For the most part it doesn't bother me.

But that site, oh my god.

I'm fine with having a vagina.  Honest.  What I am not okay with at all is being talked over because I have one.

Anyway, that's where I'm at.  It's scary and I'm not sure I'm doing the right thing, and half of what people tell me in an effort to be reassuring just winds up making it worse, so I feel kind of at a loss.  I'm trying to make an adult decision based on the fact that I have handled all the pain life has thrown at me this far without too much trouble, and just find myself wondering whether I even know what pain is.

It's nerve-wracking.  I'm doing my best to keep up with it but it's not easy.  And part of me feels bad for going into this voluntarily, when my girlfriend is just going to have to bust her ass to take care of me.  I don't want to be any trouble.  I don't want to be high-maintenance.  She deserves to have me fully-functional.

I don't know.  This kind of sucks.  I'm not sure I'm doing the right thing, or whether it will turn out well, and I just wish I knew what to really expect.

naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Default)
It's still most days that something goes wrong, and even a little pain leaves me nervous and wondering if there will be more, and if so, when, so it makes it uncomfortable going anywhere.

My gut's latest trick is attacking me if I drink too much at once.  Even water.

I can't even drink water.

And eating what most people would consider a "full meal" tends to be too much for me.

Keep in mind, I am not less hungry or thirsty than most people.  I still need to eat and drink just as much as anyone else.  But I have to do it in little bits if I want to avoid pain.

A person with executive functioning issues having to split meals up into smaller, more frequent meals.

Guess how easy that is for me?  Guess how often I manage it?  Go on.  Guess.  I eat two full meals on an average day.  It has to be a very good day before I get to 3.

And wow, this constant threat of pain makes every aspect of my health care more fearful.

What if I hurt myself and need to be on pain pills?  Those constipate you, and the IBS sure doesn't need help doing that.  The remedy for that is laxatives, which cause intestinal spasms that are agonizing.

Anything that causes diarrhea or constipation gives me literal pain in my asshole.  Hemorrhoids, or just plain acid burn.  OR BOTH.  Disgusting, yes, but fuck it, I've stopped trading on my sex appeal here, and I'm too fucking tired to be embarrassed anymore.

What if I wind up in the hospital for something?  Will they provide me with food I can safely eat?  (Fuck, will they even treat me with dignity?)

What if I wind up losing my gall bladder (all the women in my family have)?  That causes digestive woes for many people, the majority, even, who have gall bladder surgery.  I don't need more acid shits!

What if I wind up having to go on a specialized diet for insulin resistance/diabetes?  That would leave me unable to eat anything.  I can't eat fats, and most proteins are dicey.  No dairy.  Vegetables are pretty much right out.  Fruit is iffy.  Taking away carbs would leave me with literally nothing to eat.  (This one is at least comparatively unlikely; it doesn't run in my family that I am aware.)

Like, laugh if you want, but this stuff keeps me up at night.

My guts just attacked me a couple of hours ago and while it wasn't that bad as these things go, I don't have the spoons to deal with it again.  I don't want to eat, but I'm hungry.

I'm tired of it.  I don't want to live the rest of my life like this.  And unless they make FMT more widely available for IBS, then make Medicaid pay for it, I'm going to have to.

I mean, poop transplants, wow, that's its own traumatizing nightmare that I would rather jam a fondue fork up my nose than seriously discuss at any length, but at least it would offer some hope provided I could stop having panic attacks long enough to do it.

I can go back to the gastroenterologist, I guess, and try to get him to prescribe me Rifaximin again, at the higher dose a couple of studies show it was effective for IBS, and hope that the higher dose gives longer-lasting effects than the lower doses did.

There's just so few options for treatment, and even managing it this well has required me to live off of chicken and rice and chicken noodle soup for months now.  So like, best case scenario the way things are right now, I can still only eat like five things, but I'm not in pain.

Worst case scenario, it just keeps getting worse, I can eat nothing, and can't even drink water.

All that said, my life is amazing and I am very grateful because 2016 may be a disaster on a "the entire rest of the world" level, but for me personally it has been pretty fantastic.  Yeah, there was the whole "I can't get my meds" issue, but that's sorted for now, and the divorce stuff is painful in many ways which is pretty unavoidable, but . . . yeah.  I'm happier than I have been in a long time.

Just.  You know.  Being able to DRINK would be nice.
naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Default)
Everything has just felt . . . flat.

I have things that need doing, and I even do some of them, but my heart isn't in it.  It's not even like depression, where there is nearly always a place to get away from it, whether that's video games or reading or playing with pixel dragons or writing or RP, it's just a matter of finding it.  This is just . . . I do the things I want to do, and I don't enjoy them.

I'm too tired and numb to do much, caught between feeling awful and feeling awful for feeling awful because I lost no-one personally and I'm not a part of the group most affected by it, only the LGBT community as a whole.  I'm angry, but it's an overwhelmed kind of angry because it feels like there's nothing I can do to stop people from being so fucking awful.

Assholes talking about this want to blame Muslim people, to which I say bullshit.

They want to blame mental illness, to which I say bullshit.

They want to blame frustrated homosexuality, to which I say bullshit.

The man was a hater, and he wanted to kill.  So he did.

Being Muslim, mentally ill, frustratedly gay, does not make you a wannabe killer.  But people imply it does, piling up more shit on the doorstep of Muslim people, mentally ill people, closeted gay people.

And people will do doughnuts around their own assholes to try to avoid saying that it was flat-out homophobia, which our nation is positively seething with right now.

I grieve most for the LGBT Latin@ community, dealt an incalculable wound.  One that has been largely overlooked in discussions of the tragedy.  Race has been erased, and we must not allow that to continue.  Not outside the LGBT community, nor within it.

I fear most for the Muslim people who will suffer for this, especially LGBT Muslims.

This happened during Pride Month, during Immigrant Heritage Month, during Ramadan.  This is a time for celebration, for appreciating history, it is a sacred time.  The larger LGBT community needs to close ranks around these people.  Protect them, as Tumblr says, at all costs.

I'm avoiding news as much as I can because the commentary is shit.  I avoid talking about it with people, even people I trust, because it's a near guarantee that something incredibly stupid is going to fall out of their mouths at some point.

I'm mourning for the wider LGBT community.  But I also see a lot of hope coming our way in the future.  

This will become part of our history, another wound to add to all the others.  And we will draw together over it, like scar tissue knitting over a wound.  We will remember it every June by coming closer, by saying the names, by remembering, by taking joy in what we have left of what was, and in celebrating what is new.  

Because while there are new names with no heartbeats behind them now, and while there will be more of those between now and next year, there will also be new names and heartbeats next year.  Just-Out folks of all ages, people newly married, newly escaped from abusive families, people participating in the community in new ways, living their truth.  

This must never be forgotten, we must use this pain to make others understand, we mustn't back down.  We must use this to find new ways to reach out and demand that the world change.  But we must also find new ways to feel alive and love one another.  The sole legacy of this should not be of anger -- though our anger is beautiful and so necessary -- but also of creation and hope.

We are making so much progress, and hostility directed at us is one of the first signs of that.  It is meant to force us back into invisibility.  To silence and terrorize us.

And it's just not going to work.

Right after I heard the news I went and climbed into bed with my sleeping girlfriend, and I lay there with my skin against her skin, floating in a fragile sort of peace because she didn't know yet, and I comforted myself by thinking that even if this is taken away from us by violence tomorrow, we would still have had it.

And that even though this loss has been incalculable, even though the world and the wider LGBT community has been robbed of these vital presences that were so needed, nothing can erase them completely.  Much has been lost, much will never be made, never be done.  But what was done and what was made has not been wasted.

I comfort myself with that, too.
naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Default)
 "Amanda" grates on me more every day.

Lovely name, really truly lovely, but . . . maybe it's just the radical change in circumstances, leaving behind 20+ years of history, but I don't feel like that person any more.  Not just that, but . . . it's a woman's name.  I'm uncomfortable with that, too.

I have no idea what I'm doing.  I'm assured that's okay and that my identity is still valid.

I, uhh, just wish I knew what that was.

Because I have no clue.

Pretty sure I wanna be "Alex", though.

Plants!

May. 12th, 2016 09:05 pm
naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Default)
I briefly mentioned our little container garden yesterday.  Here is my favorite part of it.  Some sort of Echeveria, I think? I’m not sure. 

Whatever it is, it is precious and luminous and fat and so obviously happy to be here (in short, everything I strive to be) and I love it to pieces.

PLANTS.


Echeveria?


It has two secondary rosettes and is making itself another new friend, I think, of to the right near the flowering stalk.  It is slightly translucent, even with the waxy coating, so it has the softest shadows imaginable.  I really love it.  It is so friendly-looking and sweet.

I have no idea what its little friends are off to either side, but I need to pot them.

Behind it is a pot with a rose of Sharon, some lamb’s ear, and some mint, and the yellow flowers I was talking about yesterday.  Totally surprised me.  I have no idea what they are attached to.  I think it might be some variety of Sedum?  I seem to remember my sister saying that when she gave it to us.
naamah_darling: Picture of a treasure chest with a skull and crossbones on top. My art! (Artistic)
But it's not not magical.

I am finding new ways to be content every day.

When you're in a situation where more harm is being done than good, and no forward advancement is happening, no amount of "little things" can bring you happiness.  I would get angry when people would say "relish the little things" and I'd be like WHAT THE FUCK do you expect me to do, just ignore how unhappy I am in favor of going "Oooh, flowers!", is that what you want?  How are flowers supposed to make me feel better when I can't breathe?  Fuck off with this "little things" shit, stop telling me to be content with cats and sunbeams and the occasional bath.  I'm bleeding out.  I don't need hot tea and a good book.  I need HELP.

Because that's what being in a bad situation will do to you.  All those nice little things are still there, but it's impossible to enjoy them, impossible to take comfort in them.  That's not a failure of perception, it's not ingratitude, it's just the effect pain has on a person's spirit.

But I'm in a situation that is working for me now.  I am in a situation that is demonstrably bringing improvements to literally every area of my life.  I'm discovering I'm strong.  Have always been strong.  Should never have had to be as strong as I was.  And now I have room to use that strength for more than survival.

Bear is playing video games, taking a deserved break after we both spent time together listening to podcasts and working on ponies, and I just went out to my little container garden and picked some real, fresh rosemary and used it on some chicken I just put in the oven.  I washed some of our new dishes.  The cats are staring out the front door, and the sun is bright and clear.  I just saw a cardinal in our bushes.

And when I went outside, I noticed that one of our plants bloomed overnight.  Just boom, and suddenly there are tiny yellow flowers out of nowhere when there were literally no flowers yesterday whatsoever.  I don't know what plant it is.  It's something my sister gave us in a big flowerpot of mixed plants.  But it's there, blooming brightly like everything in its life is going right and it's happy right where it is, and I realized that here, here is forward progress, and evidence that I am not fucking everything up.

The little things didn't lift me out of the bad place.  But suddenly being able to appreciate the little things again lets me know I'm not still there.  I hold my cats or sit in my bath and I think I am enjoying this.  I am happy right now.

And it's not visible in my words, but the other half of this miracle, the part that isn't simply "No longer in a bad place!", is Bear, and her presence as a wonderful, beautiful companion who I am grateful to have in my life every day.

It's a good world that has her in it.  It's a good life we have together.

I am less afraid every day.  I am happier every day.
naamah_darling: Picture of a treasure chest with a skull and crossbones on top. My art! (Artistic)
This is Astraea!  She is a cartographer, astronomer, and navigator.

She was a Patreon reward pony for the lucky winner of my yearly drawing for $15+ patrons.



If you guys could help spread the word about my Patreon, that would be swell.  We took a big financial hit the week before last when Bear lacerated her toe and twisted her ankle.  She was only able to return to work yesterday.  We could really use the boost.

I want to get up to 50 patrons and $500 by the end of the year, and I think those are both doable.  The second will be a little harder, so I could use all the help I can get.

Patrons get access to full photo shoots for each custom as well as more behind the scenes stuff.  Patrons at the $15+ level get entered in the yearly drawing for a custom pony.

So if you or your friends are into supporting queer disabled artists, here's a good chance to do that.  The money helps pay bills, buys my meds, feeds us, and gets our cats closer to adequate vet care.

If you want to signal boost on Tumblr,
that post is right here.

In the meantime, how gorgeous is this babe?

The nylon of her hair is very fine and translucent, so delicate that the color shifts slightly depending on the angle - the white looks blue where it's viewed in oblique light, the blue looks purple, the purple looks pink.  It's not an effect I was able to capture adequately, but you should know about it because it makes her absolutely radiant in person.

I honestly think she might be the prettiest custom I've done.  I don't know.  It's hard to say, so many of them have been so beautiful.  But I am especially pleased with her.  You know how sometimes you hit exactly what you were aiming at?

Yeah. 

You know how sometimes you hit it right out of the park, better than you had hoped?

Yeah, that.

Really happy with her.  I hope you enjoy taking a look!








Again, her full shoot is available on Patreon to patrons of any level, even $1.  Please go give it a look!  Help us support ourselves!

Thanks, everyone!
naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Default)
At this point the struggles to get adequate treatment are severely interfering with my ability to benefit from that treatment. If it weren't for the fact that I can't sleep without the Seroquel, I'd say it's not worth it at all.

I went to go see about the results of the genetic test today. First, I waited for over an hour and a half because the fucking staff and the fucking doctor forgot about me. Next, they didn't even have the goddamn test results. So I wound up talking about the potential test results and their potential usefulness with the guy, who was . . . trying, I guess. But he seemed pretty . . . I don't know. Condescending and dismissive, but in a way that I find it hard to explain so that it sounds legitimate. He wasn’t very responsive, either. I just don’t think we’re a good match at all.

Part of me wants to say maybe it’s the enormous goddamn chip on my shoulder. Another part of me is like "No, you didn't make that up, and the chip on your shoulder is there for a goddamn reason."

So I have another appointment in two weeks for I don't know what, and when they find the fucking test results the doctor is going to call me and we'll discuss a plan. I'm inclined to skip the call and just go to the appointment. Hearing issues make phone calls unpleasant for me. But that leaves me with two weeks of nothing.

I should be used to being put off by now.

The therapist I'm supposed to be seeing runs the clinic. I just have to make an appointment to go see her.

The appointments I keep having to make are keeping me awake. Keeping me from getting my sleep schedule brought back around. And when they are fucking pointless bullshit they just make everything worse.

I HATE THIS.

I want to quit so badly. I just want to fucking quit.

I’ll deal with being sick. I just want to be left alone.

Meh.

Apr. 16th, 2016 08:10 pm
naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Default)
TW: eating disorder stuff

The IBS had me in such pain that I lost about 30 pounds last year, and I spent a lot of time unable to eat to satiation.

Now that I'm cooking my own food I'm relatively stable, and have been able to eat as much as I want.  That has led me to regain everything I lost (and will probably wind up regaining more because that's how yo-yo dieting works, even when it's not intentional), and what's worse, I'm having a recurrence of the behavior I had after years of starving myself: I'm eating a lot, and almost constantly throughout the day, because that's what food deprivation does.  It makes you hungry.  Not hungry in a stomach growling sense, but in a deeper way.  Hungry on a cellular level.  It's a compulsion to eat and it's almost impossible to ignore.  Doing so is upsetting -- it reminds me too strongly of doing it deliberately, reminds me of how miserable I was.

I know that resisting it only makes it worse and makes it last longer, but I still have a lot of issues around my size and it's distressing.

I'm still dysphoric about my body.  I don't know if that will ever change.  And this is not helping.

Stupid IBS.  Just another way it fucks me up.

naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Default)
For now we have the Seroquel situation under control.  I have a generic that works.  Thanks to Bear and her therapist for taking the ball on that one and making it happen when I didn't have the strength to do it.

All that's left is the Wellbutrin and I have a sizeable stash of it.  Thank you to those who helped me obtain it.

And I may not need it, I don't know.  While I was off the Seroquel, I had to stop taking it even though I had some, because it's very activating, and made it even harder to sleep.  And I've been all right without it.

The other news is that I was offered genetic testing to determine what other antidepressants and antipsychotic drugs might work for me.  It could be there is a better answer all around.  I'm very excited about this.  Aside from it being SCIENCE! from THE FUTURE! it's also an avenue of enquiry with the potential to yield valuable data.  So I had the cheek swab done yesterday and will have the results in a couple of weeks.

Neat, right?

All of this undermedicated nonsense aside, especially now that I have a couple of days' worth of solid sleep under my belt, I am feeling better than I have in ages.

My situation has been complicated -- more complicated than I can or want to discuss here -- and difficult for a long time.  Resolving that has been tricky and sometimes frightening, but also necessary and freeing, and I am feeling it more each day.  Bear is a tremendous help in that regard.  I love her deeply.  We are a strong unit.  I have confidence in us.  And confidence in myself, that even if this doesn't work out maybe I really could find a way to make it on my own.  Maybe I really would be okay.  Maybe I'm not the unsalvageable mess I've thought for so long I am.

I'm not as scared of the future as I was because I can actually see a future, instead of just . . . hopelessness and more of the same, going on forever.  I'm still scared, yes, but my life feels like it belongs to me again.  It feels real again.  I feel real.

Sometimes I feel like I should have done more to make things right, and every day I feel that I should have done what was necessary sooner.  Then I think yes, but I did do what was necessary and I did save myself.  I survived.  Even if it was difficult, and sometimes distasteful and unfair.  But I survived.  And that's enough.  I should not have to be ashamed for anything I did to survive.

There is so much I wish I could say, but I have to leave it at "I am happy here."
naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Default)
I dreamed that Bear and I were trying to get things fixed up, but someone kept undoing all our work, and our things kept getting lost, and it was all quite frustrating.

It was full night outside and we hear the sounds of a parade so we go look, and it's some kind of weird (but beautiful) Midnight Carnival thing.  People in costumes, in masks, carrying banners.  Strange animals.  Dancing, singing, drumming.  It's spilling over into the park across the street, and we decide to go put on some costumes and have a walk, because fuck working to fix a mess we didn't make.

After a while, all the motion and noise gets to be too much for me, so I excuse myself and go walking back the way the procession came, where it's quiet and dark and soft.

I see a paddock, and I can see a stable up near the crest of the hill.  I call out and two horses gallop down.  They're friendly, and follow me along the fence as I climb the hill toward the house.  There's an old woman there at the top of the hill, watching me.  She's grey, wearing a grey robe, and unbelievably ancient.

"Was that you in the street just now, calling to my horses?" she asked.

"Yeah, that was me," I said, not sure if she was going to be angry for interfering with her animals.

"You looked so beautiful.  Just dancing and spinning as you walked."

"I wasn't dancing."

"Well, maybe it was something else, but it was you."

I'm confused.  I wasn't dancing.  Seriously.  Like, I'm happy, I'm in love, but it's not the same thing.

She just shrugs and points up.  "Look how clear the stars are," she says.

I look up and there is Orion, huge and handsome, and more stars than I have ever seen in the night sky.  And there are shooting stars, dozens of them, streaking the sky.  It's unspeakably beautiful.

"I'll be right back," I say hastily, giving her arm a squeeze before I tear off running down the hill.  "I have to get my girlfriend."

I run back to the festival and grab her.  "Come with me!"

"Why?  What is it?"

"Just . . . come with me!"

She's excited now.  She knows if I'm this worked up, it has to be good.  So she comes with me and we say hello to the horses and we climb the hill where the old woman is still waiting wordlessly.

"Look.  Look at Orion," I say, pointing out the familiar shape.  There are even more stars than before, and clouds skimming overhead, thin and pale but still flickering with lightning.  It looks like Orion is wearing some sort of badass celestial robe.  I can almost see him, like a picture laid over a picture.

As we watch, shooting stars keep falling by the dozens.  Some of them white, some blue, some slow, some fast, some leaving long trails and some just brief flashes of light.  Then the actual stars themselves, the real stars, begin to twinkle and put forth sharp rays of light that stay in the air, hovering.  It looks very strange, but it's also quite beautiful.

"What are those?" I ask.  They look like . . . music.  Bright and fearful music.

"They are called swords of light," the old woman says.  "It means the celestial ones are dying."

I don't know if she means angels or the stars themselves or both.  I don't ask.

Then the stars begin to go out, flashing brighter before vanishing, leaving the rays quivering to nothing in the air.  It's like watching someone turn the lights off on the entire universe, and I know that the most distant ones are going first, coming nearer and nearer as we watch them wink out and fade.

It's the literal end of the world, the end of everything, the Universe taking back its one great muttered Word.  I am terrified.

The old woman says nothing.  I don't know if Bear can even see her, or if she knows what is happening.  When I look over at her, she looks completely calm.

Without speaking, I reach out and take her big, warm hand.  

It's the end of the world and that's the only thing I want to do.
naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Default)
After trying three times to make myself understood and failing, I asked my social worker to fix this one very simple problem I had been unable to crack.  One phone call from her should have done it.  Five minutes, tops.

Four hours later, nothing.  Then a response saying that someone should be calling me, and if they couldn't fix it, to have them call her.  Wow, how many opportunities for someone to drop the ball can you count there?  Because I count at least four.  It was frankly an unacceptable response.  So much so that I didn't even dignify it with an answer because what do you even say at that point?  You have time to call someone and explain the problem and tell them to call me and then let me know you did that, but you don't have time to call them and explain the problem and then add the extra two words necessary to tell them to fix it?

I had to literally go down there with Bear and rattle a cage.  Took less than five minutes once I got it in front of the right person.

Which wouldn't have been that big a deal if literally everyone else involved in the process had not failed spectacularly to do what they were supposed to do, leaving me so frustrated, upset, and alone that I spent forty-five minutes crying uncontrollably into my pillow while casually observing myself doing this from somewhere far away, not really certain why I was crying in the first place.

That's dissociation, in case anyone fails to recognize it.  That's bad.  That's scary.

I don't know how to make myself understood.  "This is important.  I have been off my medication or undermedicated for three months; I need you to prioritize my care because I am at acute psychological risk."  How much more explicit do I have to be?

When I am in this state, I am not capable of steamrollering over problems without hurting myself.  But that is what I keep having to do.  I am constantly being asked to do more, to keep going, when I am clearly in desperate need of someone else to take the reins.

I am fucked up right now because the people I should have been able to trust, that I had been assured would help me, fucking failed.

I'm sure there was a reason for this.  I'm sure the reason was...well...reasonable.  It often is.  That's the worst part.  It's nearly always something totally understandable.

At this point that doesn't matter.  I can't keep coming in second to everyone, because that is how nothing is getting done.

And if I get angry at understandable delays I'm the unreasonable one despite the fact that taken as a whole, these delays are the most unreasonable aspect of the whole thing.  I try to make myself understood politely, and nothing gets done.  I just get hurt worse.

And at this point, I can't even articulate what form "getting hurt worse" would take.  I don't know what that would even look like.  Catatonia?  Because, I mean, that's happened before.  I don't particularly want to go back there.  I need to not be committed, thanks, because at this point I have less than no evidence that they wouldn't just beat me to death with socks full of gravel.

I don't want this.  I'm tempted to just find a way to do without the medication entirely because that would honestly at this point be easier and healthier than trying to get hold of it.  Maybe if I gave it time I'd be okay with just the Lamictal and nothing else.  Sure, I'd always have the pain of knowing that nobody who was supposed to care for me professionally actually did, but that's not a new sensation.

I want to be able to give people good news.  About all I can say is that the paperwork I needed faxed was faxed, and the applications for the prescription assistance programs are in theory where they should be.  That's forward progress, but not good news, and it certainly isn't the result of anyone else's work, just the result of them doing, without exaggeration, less than five minutes' worth of work.  Filling out and faxing three forms that have stupid-proof instructions at the very top.  How hard is that?  You'd think they were having to start at "inventing fire."

I won't be able to take up the matter of my case manager with her boss until Tuesday, assuming I can get out of bed.  I have had no reliable rest.  Getting up early or staying up late at least two days/nights a week because of actual appointments, and the rest just because things are so fucking broken.  At this point I don't even want to sleep because it just brings another day around, a day in which I can be ignored and disappointed.

I wish I knew how to give up, I wish I knew what that looked like, because I would very much like to do it.

Tonight I ground up the last of my shit-rate generic Seroquel and dumped it into grape juice to cover the flavor.  I can still taste it, and it's still bitter as hell.

Nothing changes.

Bottoms up.
naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Default)
So tired from cleaning that everything else is going to hell because I can't keep up.

It shouldn't have taken four days to clean one bathroom, I simply was not expecting to have to do even a quarter as much, and the repairs are still not finished. My dad is having to pay for it all, because I'm a broken fuckup who can't support themselves.

Now because of that, we got behind cleaning Bear's apartment up before her move-out day, so I did that all in one day yesterday, but now I'm way behind on my own stuff: the kitchen, my bathroom, my bedroom, grocery shopping, and the laundry. All of that has piled up into a morass that will take days to fix.

This shit has been constant, and maybe that wouldn't be a problem if I were still on my meds but I'm off the Wellbutrin completely and have only 2 days of the shitty Seroquel left. Four if I stretch it which would mean little to no restful sleep, but also would keep the discontinuation symptoms away a little longer.

So I'm doing this starting with very few resources and plunging into negative spoons pretty much daily which, if it persists, is going to put me in a scary place, psychologically speaking.

I'm still navigating hell trying to get the meds sorted out. Having to go to doctor's appointments when I have no car of my own, and when I'm sleeping during the day so basically every appointment is either keeping me up late or getting me up early. Maybe having to go to the city shelter for the homeless to see what their pharmacy can get me, which means documenting my need which means pulling together a bunch of paperwork. And going down there when I have no car and have to borrow Bear's or catch a ride (inconveniencing someone else, which is VERY STRESSFUL).

I feel like a small animal being constantly shaken and pushed around so I can't get any rest. I keep thinking "Tomorrow I can relax!" and shit keeps coming up or going wrong and keeping that from happening and I am so TIRED. I NEED A BREAK.

Being poor is expensive, a lot of work, and is emotionally and physically draining.

I just want time to rest and I thought I would have more of that but about four critical days got ripped away from me and the fallout from that, the scramble it sent us all into, has fucked up a LOT more than four days.

I also wanted a few days as an airlock to maybe move some stuff out of the way and finally paint my bedroom or something. Just something nice for me, you know? Because when we moved in here in 2008 I spent my energy on getting the rest of the house fixed up and by the time I got to my room I was just exhausted so I let it go because I felt like I didn't matter. Well, I DO matter. And I didn't want this to happen again. And it has. And it isn't my fault so I just feel like I'm being punished for thinking that maybe I deserve a little better.

Pharmacies and paperwork and doctor visits and phone calls and running around and waiting every day to hear if anything has changed. I don't feel like I'm ever going to get on top of this shit.

I need to be left alone. Just...leave me alone, please. Jesus, I need this to be over.

And a lot of it is complicated enough that I can't outsource it effectively. And I can barely keep what I'm supposed to be doing straight.

This is so fucking frustrating. I could deal with the psych meds OR the house repairs/cleaning. Not both.

People keep pushing me to keep going. No. I need someone to do this for me. To get me my meds. I can't keep this up. I am so close to breaking. It's been almost three months. THREE MONTHS. I need to REST and I need to be SAFE. And people keep telling me it'll be over soon, and it just isn't TRUE.

Not true at all.

I am so tired.

I am trying so hard to fight.

I just want it to be over. Please.

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naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Default)
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