so here i am

how I've been feeling lately: like pond scum.  like a junkie, only I don't know what I need a fix of.  like a crumpled up wrapper that someone tossed at the barrel, missed and now just keeps getting trod on underfoot, because everybody is too lazy to bend over and pick it up.

so, in general: just awesome.

according to my med tracker -into which I input my symptoms, vital signs, pain map, mood, meds, etc, daily - I'm doing just fine.  I guess that goes to show you that there are limits to what computers can do.

It can't, for example, extrapolate from the fact that my pain levels have been at a consistent 8-10 level for the past....year, that my pain is, in fact, out of freaking control.  (In fact it reports I have been "stable," which makes me want to strangle it, but it is but a website and has no neck to strangle.)


It can't use the data from my latest migraine - pain level: 9, days lasting (so far): three, meds taken to control it: at least 4, ability to move or live a life that requires doing more than rolling over in bed or taking the hottest shower possible; nil - to confirm that I have become some sort of cave troll, who lives in a twilight world where lights can't be brighter than twinkle lights, movements must all be made in slow motion, and noises can't be above a whisper.

It can take my three month mood average of 'okay' and filter it down into 36 days with at least one episode of tears; 5 days of actual, recorded laughter; at least two days when I felt like talking to people was as painful as pouring acid on myself; but it doesn't seem to register that my definition of an 'okay' mood is seriously lax, because I would've included most of those days in the roster. Or that my much lauded patience is at an all time premium - I have no time for nonsense (or only time for nonsense, I guess) - it depends on who you are and what you want, but if it's stupid, I'm outta there, because ain't nobody got time for that. 

It can tell you that my blood sugar's been bloody high - a fact probably influenced by my inability to eat anything that doesn't come in the form of a cookie, potato or cupcake without wanting to throw it back up again. (Don't ask me: carbs are comfort food.) And even then, it's dicey.

It can tell you that my blood pressure's been kooky - per usual, of course - but my pulse has started to join in and beat a crazy rhythm whenever it feels like it. and sometimes I feel like it might just beat right out of my chest, as if it were a separate thing, growing inside of me, its own necessary beat that I cannot control.

Today's a tough day: I know it, as much as I know that these past six months have been hard months, and that - eventually - days won't be so hard, and months will pass without me taking such extreme note of them.

But right now, fighting this maximum migraine and the melancholy mood it has brought with it, everything seems like forever.

As if I am always just those numbers on the stupid chart, and nobody can see past them.

As if I don't remember that there's more to me than those stupid numbers, most of the time.  As if that's what I boil down to, in the end. And what a sad end that would be - abnormal numbers and not a lot else.

All I want is to feel better, and I know that part of that is in my power, that there are things I need to do to make myself feel better, (less carbs, for example) but, when you keep trying and you wind up in the same position over and over and over again - and that position is basically curled in a ball on your bed, wishing there was something you could take that would MAKE IT STOP, just for a little while - it's fucking frustrating, is what it is.

I'm working toward my 19th year of chronic illness, and sometimes I feel like I have Got This Shit Down.  I know it backwards and forwards and inside out.  I can talk to anybody about conserving spoons and living with the ifs/whens and how to fire the doctors that make you feel like garbage and why you should put your pills in those little day packets and why abelism is a bunch of bullshit & you don't have to put up with it, and so, so many other, important, wonderful things.  And I'm proud of all of that. 

But there are days like today, when it feels as if I have learned nothing, where if feels like I've spent 19 years banging my head against the same fucking wall, and only wound up with a cracked skull for my troubles. 

And I just want a break, just want a few days where I can breathe easily, and not worry about what I'll smell and how sick it'll make me.  Where I can move without immediately regretting it or hiding how much it hurts.  Where I can sleep and wake up rested; feel hunger, eat and then feel full; sit around for hours with people I love and not have to worry about where to plug in the heating pad, or whether or not I should take the next pill if I want to stay put.

It's little things and big things, and today they all feel like big things. 

Most of that stuff doesn't matter to me, on an ordinary day, but I guess that's the patience thing again - the person I have the least amount of patience for is myself.

But I know this will pass, so I'm going back to my dark-ish room (even on it's dimmest setting, the laptop is too bright at night), and the soothing voice of Jim Dale as he & I re-traipse the grounds of Hogwarts with our favorite magical trio.

Here's hoping for better days ahead.

Went to 2 different comic book stores today

Had two completely different experiences. 

The first, Hub Comics*, is right down the street from the old house, and UJ (who I was visiting with this morning).  I'd been messaging with one of the employees there about subscriptions and prepaying so that they'll hold my book longer than a few days if I can't get in right away to pick it up (Chronic Illness and deadlines: we do not coexist well!)  The guy was super nice about it, and when I went in today, even though there were two different guys, everything seemed to work out fine.  Although... now that I'm thinking about it, I didn't prepay for the next issue, which is what I meant to do, and brain fog why do I take you places?!?!? Damn it.  OK, well: I'll have to pick that  issue up right away, and prepay while I'm in there, but anyways: the guys were nice and help set me up with my subscriptions.  They let me browse without imposing or being weird or pushy.  Only issue I had was a) two steps, which is not optimal in the chair (must fix accessibility, Hub Comics people!) and b) dogs came in for biscuits which was really cute but not good for my whole 'let's remain breathing' portion of the afternoon.  Luckily, after obtaining said biscuit, doggy and owner quickly left, or else I might have had to.  But, overall, totally positive experience.

But they didn't have one of the books I was looking for, so I headed to the Meadow Glen Mall (which is not a hoity toity mall, trust me) and Harrison's Comics (which I did not know had another location: note to self).  So here's a thing I did not like: Wednesday is new comics day (as you may or may not know), and they had all the new comics out on the wall, with signs that said "Not for sale till tomorrow."  I am not a huge comic book store person, so I did not realize that "not for sale" also meant "you can't touch these" till tomorrow, and when I went to touch one of them (Did you know Castle has a comic book?  I did not!  And now I have to find out more about it, because, is Nathan Fillion drawn in it?  Because... must make it mine, if so.) and when I went to pick it up, the guy bit my head off!  "Miss! Those are not for sale till tomorrow!"  (He only get's 1/2 a point for barking Miss instead of Ma'am.  I'll give him that, anyways.)

Now, I am socially awkward enough in places where I am not ... super confident.  (Ok, so that is technically everywhere, except for ... say the library: confident. I know the rules there!) And comic book stores tend to be (for me) intimidating anyways, because I'm new to comics and there's so much that I don't know.  And when the guy yelled at me?  I wanted to die.  I mean literally, I am 33 years old: I have no idea how old the guy was (because I never looked at his face because I was bright red the entire rest of the time I was in the store, which was all filler time of me thinking "how fast can I get out of here without it looking like I am running away because this guy snapped at me?"), but I felt about 7, getting caught shoplifting or something equally horrible.  I do not like to be reprimanded.  I am so bad at it.  And all I did was ALMOST touch a comic that wasn't for sale yet. So I just sort of slunk up and down the aisles for another five minutes, all beat red, hoping that the other guy would take the register so that I could check out with him, but no such luck.  I mean, I get that it's the policy of the shop, but if you have 25 signs that all say "Not for sale till tomorrow," maybe, for the sake of the newbies like me, at least one of them should say "which means you can't even look at them even though they are on open shelves just like everything else in here."  For the sake of my blushing cheeks, anyways.

And yes, I know that some of this is just me being totally awkward and why do you even care what he thinks, but still... clearer signs for people who don't know all the rules would still be nice.  And less snapping, even if you probably have to tell people not to touch about 17 million times every Tuesday. (which might be prevented by clearer signs, just FYI.) Definitely a less positive experience, and they didn't have the book I was looking for either (although I did pick up a Women of Marvel poster book which looks super cool.  (Just wondering, comic book people - do you not take those apart to get the posters?  Because I'm totally going to take them apart for the posters, but it also seems kind of sacrilegious because it's a book....)

But look at me, out and about, going to places where I'm totally not comfortable.  Didn't ask about game nights though - which I heard they have around here somewhere, at Hub because I forgot (oh Fibro Fog, seriously?  You are screwing up my whole day - I thought I'd done pretty well!) and at Harrison because Hells No, my face was on fire, are you kidding me?  Oh well: there's always next month**

*Also please note their super adorable signage: Love.  :)
**Hub's website says Tuesday nights from 5-9.  Tonight was Tuesday: why didn't I wait a few hours? Next time, Fibro Fog: no forgetting.

We all agree the Oscars were horrible, right?

Glad we're on the same page with that.  Seth McFarlane was his usual misogynistic, racist, homophobic self (even toned down a bit), who should've just sung and danced his way through, because he was much better at that then telling 'jokes.'  Because said jokes were not funny.  At all.  Funniest joke he told: Trying to make Tommy Lee Jones laugh, which was in the first five minutes of the show, so... good job!  And everybody else was at least half a degree off as well: presenters who should've been amusing were not, people were awkward and uncomfortable the whole evening.  It was just baaaaaad.

Bright spots, however included:

 Jennifer Lawrence, who is amazing, and awesome and HUMAN.  Plus, her little spill gave us this GIF of Hugh Jackman & Bradley Cooper being gentleman and making me feel all swoony:

 

As well as this GIF of feeling totally overwhelmed by Jack Nicholson (which, who wouldn't be?) 

Then there's the totally adorable Quvenzhane Wallis chit chatting with Halle Berry (like you do) and telling reporters to call her by her real name, not "little Q" or "Annie" (Although: hooray for a new production of Annie, and girl can sing, so bonus points!):

And yes, The Onion is abhorrent, but we're not talking about that right now. 

Aside from the awesome ladies, and the kick-ass divas singing their butts off, the show was sad (and even the sad parts were poorly done - people were missing from the memorials? What's up with that?) Instead of going on a real rant though, I think  I'm just going back up to that first GIF and being swoony again and again.  :)

Letting Other People Tell You Where I Am

Every morning I jump out of bed and step on a landmine. The landmine is me. After the explosion, I spent the rest of the day putting the pieces together.  Ray Bradbury

 “I want to think again of dangerous and noble things. I want to be light and frolicsome. I want to be improbable and beautiful and afraid of nothing as though I had wings.”- Mary Oliver

“Life’s challenges are not supposed to paralyze you, they’re supposed to help you discover who you are.” - Bernice Johnson Reagon

“I want so much that is not here and do not know where to go.” - Charles Bukowski

“There is no coming to consciousness without pain.  People will do anything, no matter how absurd, in order to avoid facing their own soul. One does not become enlightened by imagining figures of light, but by making the darkness conscious.”  Carl Jung

“It’s okay to feel the way you feel. You can feel angry. You can feel afraid. You can feel crushingly disappointed. You can feel bitter. AND you can feel the love.” Pace, 12-12

Mostly, I've been feeling the darkness, doing everything I can to avoid feeling the darkness (including some new obsessions which I will be back to share with you soon), and facing a whole bunch of things I'd really rather not face - about myself, my situation, and my future.  It's "figuring some shit out" time, I guess, and so far, I don't much like the stuff I'm coming up with.    I'm also having a super low-spoon issue - which is not news, but is particularly frustrating, because I'm used to having a set number of spoons - small but reliable - and without even those few spoons, I'm continuously frustrated with myself & my inability to get things accomplished most days.  I don't know if it's new meds (I think it might be), but I do not like it.  And coming at an emotionally taxing time, as well, that's not helpful.    

But I haven't been completely silent.  I managed to post over at The Band (the completely awesome, supportive Band Back Together) about one of my worst fears, one of the things that's most terrifying to me right this minute.  I've been active on Twitter for a bit, c'mon over and chit chat with me in 140 characters if that's your thing.  And I'm coming back here, because, as always, not saying things is hurting too much.  So, I'm here: trying to feel the love, and hoping y'all are feeling it too.  :)

"I Go To Seek a Great Perhaps"****

Well, here we are less than twelve hours into the New Year, and I've already made at least one wise decision:*  Early this morning, after watching the ball drop and wishing my mother a happy birthday, I snuggled down in bed with my first book of 2013, John Green's fabulous (and wrenching) Looking for Alaska .  I went into it knowing absolutely nothing: I thought Alaska was the state, if that gives you a clue as to how little I knew about the book (for those who don't know, Alaska is a girl's name).  But I had just spent three days in December watching John Green and his brother Hank (along with various other Internet-famous peoples) talk and read and work out and be awesome and chat live on YouTube with millions of Nerdfighters, all for charity. 

I don't know how I wandered across this year's Project for Awesome: I follow both Wil Wheaton and Miss Zoot, who are huge John Green fans, and I've been building up to reading The Fault is in Our Stars , because it's on every single "Must Read" list I've seen (and so many people I trust have loved it) - but it's also supposedly truly heartbreaking, which I can't really deal with yet, so it's been on the "I'll get around to it when I'm less weepy" pile for me. Anyways, somehow, I found out about Project for Awesome, and it was (awesome, that is).
  And in the midst of all the last minute Christmas shopping and bustle of wrapping up the entire known world of gifts, I carved out two days to sit and listen, and comment on various YouTube videos made in support of a million different charities.  The way P4A works is that each comment is worth a penny for a charity, and cumulatively, with over 700,000 comments they/we managed to raise $483,446 for the Foundation to Decrease World Suck.  I'm sorry, but if that isn't the BEST TAGLINE EVER, then I'm a unicorn.**

So after spending nearly three days listening to the Green brothers (and friends) speak and ramble and make up songs about their faces in the middle of the night, and try to auction off everything from googly eyes to unpublished, unfinished stories, and be as honest and heartfelt as just about anybody I've ever (not actually) met, I fell in love with them.  And it turns out, there's plenty to love: Their YouTube videos are amazing and informative, and have just enough snark to make me glad there are other people as sick as me out there.  Although there are SO MANY of them, and it is a little bit overwhelming right now, I'm glomming as fast as I can.

ANYways - back to the book.  It was, as expected, super awesome.  Quote-worthy, of course, but also moving and emotional in a way that I find much more often in Young Adult books than in what's supposedly "great literature" (make sure you read that in a snotty, British accent, okay?) I know there are people who look down on YA as a genre - these are the people who point at the dreck that is Twilight and pretend it represents the entire spectrum of what YA produces - but those people are obviously dopey non-readers, because the amazing stories, characters, themes and plots that exist in the YA section of your bookstore definitely hold up against any other, purportedly more 'grown-up' tales.

And Looking for Alaska is a good example of that.  Life and death is no less serious just because you haven't turned 18 yet.  Fear and love and hope and wanting - none of those things feels any less real or any less significant because you don't have a driver's license. I guess grown-ups forget that truth is truth no matter how old you are, and pain doesn't skip over you because you aren't ready for it.  I guess some grown ups forget that, anyways:  John Green certainly doesn't. 

I loved the book, is kind of the point, even though it was hard to read it, and even though I probably should've tried to sleep instead of reading it all in three hours in the middle of the night.  I loved it, and I'm going to read the rest of the box set I bought myself (even though it was two days before Christmas and I am seriously poor) as soon as I feel up to confronting a book about kids with cancer.*** 

If you've been here a while, you know that I don't like to do resolutions for the New Year, mostly because I can talk myself out of them just as easily as I can talk myself into them.  Instead, I like to pick a word, an overall theme that I hope to inject into my year.  One year it was Closer, another Breathing, yet another Worth.   All worthy, and not a single one worked out as I'd hoped.

Still, they each helped me to get through some tough times: keeping the word 'closer' in mind helped me get through some seriously shitty doctor's appointments; remembering to 'breathe' was the only thing that kept me sane this summer, when everything was crumbling around me and I was watching a woman I loved wither away; remembering that I am 'worth' something helped me confront some serious injustices in our family.  These mottoes have become important to me, have become keywords that help me cope with everything from getting out of bed in the morning to how to help someone you love say goodbye to everyone they love. 

But I was having such trouble coming up with a word for 2013 - I couldn't think of a good enough theme to propel me to where I want to be, to help me realize that where I am is both good enough and not enough.  I wanted something powerful, something ... all encompassing.  Of course, I came up with some 'almost right' words: try, accomplish, be willing.  But none of them were just right.  I've been playing Goldilocks with this year's keyword for almost a month now, trying to narrow it down. 

And then, this morning.  And John Green's obsession with last words (which, if you ask me is a wondrous obsession to have).  And The Great Perhaps. 

There's a labyrinth too, and that's a good word, but it's not my word.  Nope, my word for this year is just Perhaps.

Because sometimes I need a little push, and perhaps opens up the possibility.

Because perhaps makes me question things I already think I know the answer to.

Because perhaps is a positive maybe, and maybe is all I ever know.

Because perhaps is hopeful, and I want to be, too.

Because perhaps makes it seems like the choices are mine, even when they don't feel like they are.

Because perhaps holds your hand through the horrid stuff, and (while I personally could use a year free of all of that), it's comforting to know there's something to hold onto when it inevitably happens. 

Because perhaps comes from a new friend, and I'm hoping it will lead the way to more of them.




Because perhaps I can decrease some world suck of my own, thank you very much.

Happy 2013, everybody.  I hope your year is full of Perhaps as well.  


*I say "at least one" because I also did things like eating breakfast and taking my pills, which, in the long run, will prove to be wise decisions, I hope. 
**I am unfortunately not a unicorn. 
***Which isn't today, and IDK when it will be. Even though I know it's going to be really good, there's too many tender points that'll get poked, and I can't do that today. 
****Check Here for more info
 

Our siblings push buttons that cast us in roles we felt sure we had let go of long ago - the baby, the peacekeeper, the caretaker, the avoider.... It doesn't seem to matter how much time has elapsed or how far we've traveled. ~Jane Mersky Leder

So I was just reminded that my last post was a super-angry rant, and that's not particularly OK with me, long-term.  Yes, I'm still pretty angry; but I'm working on it.  It is hard.  (Well, duh.) It is spectacularly hard, sometimes, but I'm trying not to wallow as much, at the very least. 

I am also having a spectacularly difficult time summoning my Christmas Spirit this year, which, is not unexpected and completely normal, but also kind of sucks.  Because I love Christmas, but Christmas like this - Christmas-without-Grandmother, Christmas-where-everybody-is-still-hurting, Christmas-with-uncomfortable-truths-being-faced, Christmas-with-the-righteous-anger, Christmas-with-the-wounded - is not all it's cracked up to be.  I'm very thankful that there are children in our family who I have to fake Christmas cheer for, because sometimes, if I fake it long enough, it starts to feel almost real. 

Case in point, this weekend, two such littles (who aren't that little) helped us decorate our Christmas tree.  No Longer Youngest Nephew is 12 ("and a half", he would insist) now, and can reach the top of our pretty tall tree well enough to help string the lights.  Which is both amazingly helpful, and terrifyingly wrong.  [Stupid kids and their growing up.  Grumble.] Lil Girl was very critical of the placement of certain ornaments (which habit, I fear, is something she probably comes by naturally), and the tree turned out quite lovely, after all.

My favorite part of the day, though, was the 45 minute battle the two of them had over who got to sweep up the most tree needles.  Because if your sibling is doing something, then it must be worth fighting about, is basically Lil Girl's theory, at this point.  And her big brother can't resist arguing back, even over something so insubstantial (and chore-like!) as sweeping up big piles of needles and then vacuuming them up.  It was annoyingly normal, and just what I needed to keep the smile on my face.  (And, of course, in the end, Mum and I wound up doing most of the actual cleaning.)  But here is a picture of them, working their hardest to outdo the other in the Battle For The Most Pine Needles 2012:

Take your smiles where you can get them, people.  Definitely a lesson I've learned this (horrible, terrible, no-good, very bad) year.  And I'm working on that, too.

You wouldn't like me when I'm angry.

I took a couple of days off there, to deal with the flare from the steroids, and am finally beginning to feel more human again, so I'm back.

And I'm back with a jumble of thoughts (which is so unlike me, I know) and some interesting (to me, at least) revelations. 

While I was gone, I had a rheumatologist appointment, that was basically a waste of time, energy & spoons, but that left me feeling like "why do I even bother?"  The doctor was very nice, he managed to cross another scary diagnosis off my list, but, in the end, as always, he just said "Well, it looks like your doctors are trying everything that we know to try.  Unfortunately, Fibromyalgia is just one of those things were there's not a lot we can do for you."  He did add "which you obviously know," which was a nice recognition to get, but still: in the face of the worst pain flare I've had all year, it wasn't a lot of help (neither was his examination, which I managed not to cry through, only to burst into tears the minute he left the room.  Attractive.)  Anyways, I try to wrangle December into being as appointment free as possible, because of all the other, happier chaos that manifests itself around this time of year, but between the emergency room visit and this rheumatologist, I wanted to cancel ever appointment I have between now and ... forever, just because.  I didn't, because I've got the dermatologist next week (need non-steroidal answers for allergic reactions and eczema, please) and then I'm clear till the New Year.  At which point I have to psyche myself back into attempting physical therapy again, but I'm in no mood to try that yet, so I'm not going to think about it right now.

Speaking of not thinking about things, ahem: here are the revelations I was talking about:

 So I realized a few, kind of important things the other day, in the midst of the flare-that-made-me-want-to-murder-things.  First was that I'm glad I remembered enough from my college cramming days to plan ahead with my NaNo word count.  I managed to pad myself well enough on the good days, because I knew over the course of the month that I would have days when I physically would be unable to write - not to mention that there would be just regular bad "oh my god where have all the words gone" days - to have hit the 50,000 mark a few days before November 30th.

 Which turned out to be excellent, because the 29th is the day the steroids worked their vicious magic, and I have contributed nothing meaningful to the novel since then.  So, Hooray for the paranoid pro-active part of me that remembers that when there's a deadline for things, my body usually has a way of saying "fuck that!" at the exact wrong moment.  (Witness, pretty much every semester of college, ever.) 

The second thing I realized is that the whole endeavor of writing a novel - which turned out to be a overwhelmingly positive experience for me, in terms of creativity and confidence and just the power of setting a goal and accomplishing it - was basically a huge, spur of the moment diversion for me.

That's right, people, let's just take a minute to bask in the glory of this statement: the power of my intense ability to procrastinate is such that I SPEED-WROTE A NOVEL in order to not think about what was actually going on in my life. 

Which is both sad.  And Awesome. 

I had no idea, on October 31st, that I was going to start writing a novel the next day.  I was wandering around the internets, doing my usual Google Reader, Twitter, Facebook, Tumblr, Amazon, Reddit, YouTube, I could major in the internet routine and came across someone else's "I'm going to be writing a novel, starting tomorrow" post and it pushed a button in my head.  I knew about NaNo, of course, and have spend years making the face of someone who wants to write but doesn't understand why you'd pick NOVEMBER, aka smack dab in the middle of the craziest time of the year to sit down and start writing a novel with speed and ferocity.  It's always seemed illogical to me, knowing what a regular November is like around here, that NaNo would be something I could ever participate in.  And, I think, if I had given myself the chance to talk myself out of it, it wouldn't have been something I ever participated in.

Instead, fueled by my profound need to not be where I am right now, not deal with the people around me right now, not feel the way I'm feeling right now, I just plunged right in.  I signed myself up on the NaNo site and introduced myself as a newbie on the messageboards.  I read all the posts about people who'd been plotting out their novels since last November, and shrugged: it wasn't like I didn't have 14 different books rattling around in my head at any given time, waiting to be written: Of Course I could do this!

And, the amazing thing to me is that I did do it: even though.  Even though the bronchitis and the wedding and the house guests and the sinus infection and the allergic reaction to nothing and not seeing the kiddos in forever and Thanksgiving and the crazy ass tension in my house and the family members who still aren't speaking to each other and the worst flare I've had in a long time.  Even though all of those things happened, I still managed to write a freaking novel.  (Or, if I'm honest, 9/10ths of a novel: but, still 50,000+ words, and that was the goal, so I'm going to claim it as my own precious.)

The fact that I was writing, here and with the book, and all over the internet any time I had a free minute, as a way to avoid my house, my family, my health, my issues, my sadness?  It's not that it didn't occur to me at the time, it's more that it didn't feel like a huge deal while I was doing it.  It gave me an excuse to sit in my room for hours with the door closed, clacking away at the computer without having to worry about who was worrying about me, or how things were not progressing the way I wanted them to outside of the computer. 

And the thing is, even though it's kind of sad that I have so many reasons to want to escape the here and the now, the awesome part comes in where I don't really feel guilty about using it as an escape.  I don't feel like taking those hours to myself hurt anybody, even me, and that's a change in my attitude, that "This is my time, and I can use it to write a book if I want, even if everything else continues to crumble."  Me writing the book isn't selfish or passive-aggressive (although I've probably been both of those things lately, in other ways): it's mine.  And knowing that I deserve things that are just mine, even if it is words on a screen and a huge sense of accomplishment, that's new for me too.  It's something else I'm working on.

Now that the flare is on it's way out (thank the lord and hallelujah: may i never have to take steroids again), I'm going to start claiming that time again, just for me.  I'm going to incorporate writing goals into my daily schedule again (less hectic ones, for sure, but still), and I'm going to keep that feeling of "finally: something I'm capable of" flowing, as much as I can.

Without the words to work on this past week, I've also realized just how sad I am.  I mean, really, having to swallow a lot so you the lump that's sitting there doesn't make me start bawling level of sad.  Heading into Christmas without Grandmother, and actually feeling just how much I miss her is overwhelming.  There's a lot of little things, tiny moments during the day where I just get that needle prick of grief, and all the happy, 'let's gear up for the holiday' spirit I'd been cultivating just ebbs out of the hole it leaves behind, like the air dribbling out of a balloon. 

Just little tiny things, like a book she gave me for Christmas that's part of the decorations I'm putting up.  Or how she didn't set her manger up till the 15th, because 36 years ago, she was setting up her manger when my father called to tell her my brother was being born and she left it there, disassembled, to rush to the hospital.  Or writing out the Christmas card to Uncle Jack, and none for her.  Little bubbles of grief come at me, unexpectedly, and then I remember that she's really gone.  I remember how hard those last months were for all of us, how much I wish it all could have been different. 

And I'm still SO ANGRY.  That's another realization that just snuck up on me, because I don't particularly think of myself as an angry person, but I'm so angry lately.

 At my dad, for being an asshole, then, and for doing things like daring to talk to me, now.  At time, for continuing to pass.  At the world, for not stopping to let me grieve.  At my family, for not realizing that I'm still grieving and that it still hurts, all the time.  At Christmas, for coming without her.  At her, or Nana, or other people, for being dead in the first place & reminding me that everybody I love is going to die, eventually. At all of my pregnant friends, (which is basically 99% of my friends, at this moment) because they are, and I'm not.  At myself, for being angry. And sick. And sore. And stuck. 

And then I'm surprised that I tried to escape into a fantasy land of writing a book?  With all these feels, I'm surprised I haven't started trying to learning German or how to play the harp or something equally intensive - anything at all that does not require FEELING ALL THIS SHIT. 

But, here I am, stuck with all those feelings, making it through, minute by minute.  And trying to feel the happy moments as they come, trying to hoard them and enjoy them and make as many of them as possible to just get me through to the New Year.  Being glad that the steroids make my pain flare, as opposed to my anger, because otherwise, I would've Hulked out by now. 

I'm going to go to a birthday party on Saturday, and get a tree early next week, and work on feeling the happy.  Feeling the everything, just a little bit at a time, if I can manage it.  I hope your December is bringing you the happy, too. 

Hanging out with my Sasquatch

Can't think of a word to encompass how overwhelming my pain is today.  Basically, I need to be floating, touching nothing with even the tiniest inch of skin, and - since my levitation skills are nil - that's not going so great.  I'm loaded up with drugs, in the hope that I'll just drift off for a little while, laughing at the idea that chronic pain patients use meds to get high... I'm using mine to keep me from skinning myself or following through on jumping out the window, just to feel something other than how bad this hurts.  My skin is the wrong size, I can literally feel my blood pumping, as if it's bruising me just by rushing through my veins.  I hate that there isn't a word big enough to cover how much it hurts; to compare it to 'hurting' at all seems like telling you a flood is the same thing as a teardrop - hurting is the only thing I'm doing at this point: it's who I am.  Existing, just breathing my way through it.  And all because of the stupid steroids, which, thanks for saving my life and all, but maybe next time you could do it in a way that makes me want to survive?  How is it that a drug that helps people with some kinds of pain somehow cause my nerve endings to act as if they need to interpret every input at DANGER: EXPLOSION levels.  I hate how quickly I can go from 'a little bit sick' to 'every part of your body is consumed by pain and fire', and how there's not a damn thing to do about it except to wait for it to pass.  Gonna get back to that, the waiting.  Here's some other people, making me feel more human, since they're pissed off at their pain, too.

"I have no patience these days with the Nietzschean cliché, ‘That which does not kill us makes us stronger.’ I’ve found that the deepest pain holds no meaning. It is not purifying. It is not ennobling. It does not make you a better human being. It just is. All the worst pain does is reduce us to our most primal animal. We want it to stop. We want to survive. It short-circuits any sense of self, diminishes us to a bundle of biological reflexes." Dana Jennings, Pain Beyond Words

“Pain is the Sasquatch of science, never witnessed, only endlessly speculated on.” Marni Jackson, Pain: the 5th vital sign.
 

"When I get caught up in the web of feeling, tied up til I’m completely ensnared in those slender threads of pain—–that’s when I realize that I’m out of any human reach——-out of the reach of rescue, but not out of harms way. You can’t kiss stuff like this and make it better—–sure, you could kiss it but what difference would that make?  Kiss it and make it the same.  Come get me and make me okay. I’ll wait here while we figure out why I’m fated to take it on any and all of my chins, What am I missing that makes me unlike what they call solid citizens?  What caused me to be a liquid citizen like myself, with the talent to find the winning part of losing, the talent to take that searing feeling of failure and writing it out til it doesn’t win…….?"   Carrie Fisher

It's just water...

Thanks for the congratulations, everybody: it does feel good to hit a goal, that's for sure.  Unfortunately, between a very pokey rheumatologist appointment this morning and the steroid related fibro-flare I knew was coming (Stupid steroids), I feel a bit like a wet Mogwai right now:

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Definitely untouchable, and barely able to shift in one direction or the other, and very, very glad I finished my words yesterday, so that pain brain is not keeping me from meeting the quota.  Gonna rest up for today, just make it through.  (Also, maybe I'll watch Gremlins, one of the least Christmas-y Christmas movies I love to watch.) 

Guess what?

I made it!  Two days, and some hundreds of word over, and I've got 9/10ths of a completed novel that may actually, at some point in the future, make sense.  :)  Just kidding: I mostly like it, and just need to write a little bit more to ... end it., but aside from that, and some major editing, I hit my goal.  So, party time, peoples! 

Shuffling along,

"There are too many ideas and things and people. Too many directions to go. I was starting to believe the reason it matters to care passionately about something, is that it whittles the world down to a more manageable size." “Adaptation”

Guess it's better to have too MUCH to think about, too MANY worries, than too few, but it still feels overwhelming sometimes.  Like, every single moment, sometimes.  Moving on.   

Just keep swimming

“When you’re at that point, when you feel it’s all pointless… It’s not. The trick is to just keep doing it, that’s how you succeed in the end. It’s the secret to life, do anything often enough, and for long enough, and you get good at it. So keep on. Keep writing. Keep painting. Keep singing. Keep dancing. Keep fighting. Keep. On.” — via: I wrote this for you

Keeping my head above water here, but just barely.  So, more wisdom from various parts.  so close to my NaNo goal (43943), but running on fumes at this point - between the rash and the meds and just getting through the day, I'm lucky my brain is even semi-functioning, so I'll take what I can get.  I can manage 6500 (ish) words in the next four days, right?  (Right.  I think. Let's just keep going.)  

By this logic, I am a certified genius

“The sign of intelligence is that you are constantly wondering. Idiots are always dead sure about every damn thing they are doing in their life.”   - Vasudev

A reminder, as I crawl my way to 40,000, with 6 days to go

“In psychological terms, it seems that drive is more important than talent in producing creative work. The psychologist Dean Simonton has argued, for example, that the composers who produced the greatest music were simply the ones who wrote the most. Mozart and Beethoven composed all the time, whether walking down a street or attending a dinner party.” 

                         ~ The Midnight Disease: The Drive to Write, Writer’s Block, and the Creative Brain,  Dr. Alice Flaherty

Just because

I love me some Fallon singing.  And mash-ups.  And Rashida Jones. 

Sadly? Still not our worst Thanksgiving story

Had to head to the ER this morning, after what was a small-ish rash yesterday tried to eat my whole upper body over night.  By the time Mom got up this morning, it basically looked like I was wearing an angry red turtleneck, with weird splotches and bumps.  Who knows?  They diagnosis was "allergic reaction - to something," but since I haven't tried anything new (medicines, lotions, foods) in the past couple of days, I have no idea what that might be.  After some steroids (my third dose in a month: yippee, all that weight I lost over the summer?  Welcome back!) and Benadryl (which did nothing on its own, yesterday, but made a liar out of me with the doctor today),  and a couple of hours, we were free to leave and continue with our feast. 

Except.... when I mix Benadryl with my meds?  Not so much for the feasting, and a whole lot of giggles at my expense.  Stupid gigglers.  The worst part is that the heating pad irritates the hives, so I have to double up on my pain meds to compensate.  It's all just ridiculous.  On the plus side, maybe I'll be able to close my eyes for a little while now. 

Happy Pie Day!

Even though we'll be smaller in numbers this year, that's no reason to make less pies, is it?  (She says, knowing that she'll be eating pie for breakfast all next week.) 

Three things

Three things that I've noticed since I've been participating in NaNoWriMo -

1) It is really cutting into my reading time, all this writing.  It's hard to walk around with my characters in my head and other people's characters in my head at the same time: I was reading a book where a character was killed and she bared only a slight resemblance to my main character, but I started bawling anyways.  I'm not saying that my mood didn't factor into that, of course it did, but still ~ but between that and the amount of TIME I spend writing, it's making it hard to read all the time, which I don't like...

2) I am really an ace procrastinator.  I can put things off with aplomb, people.  (Because once I start writing, generally?  I can knock out a scene no problem.  But getting to the actual writing point? Requires a timer, a closed door, zero distractions (including Facebook, Pinterest and other soul suckers), and a tuned in brain.  Arranging for all of those things to meet at one time, for a steady period of time - quite challenging.)

3) But, I'm 100 words shy of 37,000 words people (which, my word program counts as about 80 pages, but whatever), and ... the book is nowhere near finished, the plot is still kind of murky, and yet: I totally love it.  It's pissing me off a little, since it didn't go in quite the direction I thought it was going and I've had to do some readjusting because of that, (not to mention I have no idea how to end the stupid thing) but, mostly?  I kinda like it, this thing I am creating.  Which is huge for me, because lately, I've been feeling like everything I am doing is ABSOLUTELY IN EVERY POSSIBLE WAY ENTIRELY WRONG. No matter where I step, I manage to stumble, or land on some one's toes or a pile of dog poo or something.  People are dying, fighting, crying, mourning, faking it, trying, and I'm just stumbling in and out of the way.
   I know I say it every time, but I wish I didn't stop writing, that I wouldn't let myself stop writing, even when things are hard because I forget that it is something I like, and am good at, and am capable of.  With all the shit that's going on around here, and all of the things I'm not capable of?  It's nice to reminded that there are somethings I can still do.

Today's tidbits of wisdom

Might just give you an idea how well I am dealing with all the family drama around here, and the fact that a person who's supposed to be a grown-up thinks it's OK to be selfish, OK to ignore the consequences of his actions, and lives behind a great wall of denial. 

First up, some advice that I'm finding so difficult to put into practice, but that's not keeping me from trying, from Danielle La Porte,

"Want to improve your communication skills?
Then communicate.
Our most common communication blunder is not that we’re insensitive, or forceful, or misdirected. It’s that we fail to communicate at all. 

We swallow. We hedge. We delay. We punish with silence. We freeze with fear. We open our mind to assumptions but keep our mouths shut. We lock down. We just don’t say anything.

Most often, even weak or wobbly communication is far better than shutting down completely. Sincerity and courage go a lot further than “polished” communication skills any day.

Have the conversation. Say how you feel. Ask the question. Bring it up. Stumble with good intentions. Fly with an open heart. Communicate.”

 When you grew up in a house like mine, where your opinion was neither asked for nor appreciated by certain people, and where intimidation is still a daily occurrence, that is a lot easier said than done.  However, trying to turn myself into an actual adult, who takes responsibility for her own actions and expects others to do the same, I've realized that I can't do it by keeping my mouth shut (however much that is my comfort zone).  I'm not too pleased with this realization, people, but I'm doing my best to work through my discomfort and other people's pissy attitudes. 


 Which brings us to some vital truth from Melissa McEwan, of Shakesville: 

No one who has ever said "life is too short" to me has ever meant, "What can I do to make amends for having hurt you and restore trust between us as quickly as possible?"

They have always and only ever meant, "Your boundaries are stupid, and I am super impatient with your attempts to make me respect them, so here is some emotional manipulation to try to coerce you into letting me continue to treat you like shit without consequences."

What I'm saying is: I really hate the expression "life is too short."”

Next, a lesson from John Green:

“The good times and the bad times both will pass. It will pass. It will get easier. But the fact that it will get easier does not mean that it doesn’t hurt now. And when people try to minimize your pain they are doing you a disservice. And when you try to minimize your own pain you’re doing yourself a disservice. Don’t do that. The truth is that it hurts because it’s real. It hurts because it mattered. And that’s an important thing to acknowledge to yourself. But that doesn’t mean that it won’t end, that it won’t get better. Because it will.” 

Gonna work on not doing myself any more disservices, and I hope you do the same.  See you tomorrow, peoples.  

Prepare yourself for a week full of quotes

because my thinking box is on the fritz, and I'm at 30,000 (+!) words in my novel, and I'm not giving up on it no matter what.  even though my brain is giving up on me. 

So I've got a bunch of stuff I've been collecting from random places lately, that I keep wanting to post, and now's the perfect time for that.

To start us off, probably the best thing I've read all year, from the genius that is  Neil de Grasse Tyson:

“The problem, often not discovered until late in life, is that when you look for things in life like love, meaning, motivation, it implies they are sitting behind a tree or under a rock. The most successful people in life recognize, that in life they create their own love, they manufacture their own meaning, they generate their own motivation.For me, I am driven by two main philosophies, know more today about the world than I knew yesterday. And lessen the suffering of others. You'd be surprised how far that gets you.”