Wednesday, December 19, 2012

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.

Thursday, December 06, 2012

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. 

Friday, November 30, 2012

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

Thursday, November 29, 2012

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.) 

Wednesday, November 28, 2012

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! 

Tuesday, November 27, 2012

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.   

Monday, November 26, 2012

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.)  

Sunday, November 25, 2012

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

Saturday, November 24, 2012

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

Friday, November 23, 2012

Thursday, November 22, 2012

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. 

Wednesday, November 21, 2012

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.) 

Tuesday, November 20, 2012

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.

Monday, November 19, 2012

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.  

Sunday, November 18, 2012

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.”

Friday, November 16, 2012

Yes, totally amazing: now give me my meds and shut the hell up.

What did I say I was going to talk about tonight? 

How about strep throat?  Was that it?  No: I didn't think so, and yet, there it is. 

I spent the whole week hoping that my throat was just raw because the music was So. Loud. at the wedding on Sunday (I am the old person you all hate - Why does the music have to be that LOUD???) so to talk to anybody, you were basically yelling.  All night long.  I just figured I'd strained my voice a little.

And that probably was some of it, but then when I went in for my shots on Wednesday and some man in the doctor's office coughed directly on me.  Like, right on my face.  And didn't even give me the courtesy of an "oops," let alone an "I'm sorry, I just gave you the plague, would you like a Kleenex?"

So when my throat was about a million times worse this morning, I gave in and called my primary care, who was, you guessed it! Out of the office for the day, but her on-call covering doc could see me at three, would that be okay?  Sure.  Whatever.  Fine.

They called three times between 10:00 this morning and noon to rearrange the appointment times, and I was ready to be like "Never mind: miraculously healed! Just stop calling and making me TALK - did I mention my throat hurts?!", but then they did stop calling, so I decided to suck it up and go.

Now, the only new symptom has been my throat - nothing else, no coughing or wheezing or sneezing or anything, so I just assumed the covering doc would look at the red rawness, stick one of those sticks down my throat, and write me a prescription for the strep throat antibiotic I obviously need.

Isn't it hilarious how I'm still optimistic (and stupid) after all these years of dealing with doctors?

No it was: Let's talk about why you're in the wheelchair (because it might somehow be relevant?), and What do you mean it hurts when I press on your neck and lymph nodes (they hurt all by themselves, lady: don't touch!) and Are you sure you had bronchitis a few weeks ago? (Well, maybe I had a brontosaurus a few weeks ago, but I'm pretty sure it was bronchitis.)  Literally, let's just retake your whole history, for a strep test.  And then?  Still not give you any antibiotics.

No, after hearing that I'd had bronchitis a couple of weeks ago, and three or four sinus infections this year, the on-call doc decided that I might just have another sinus infection, and gave me Flonase.  Which... doesn't treat sinus infections.  (Or, at the very least, doesn't treat MY sinus infections.)  Told me to gargle with salt water (which I've been doing, and I hate, and blech).  Or it could be allergies, although allergy season is mostly over....and I'm on no less than three allergy meds. Whatever.  Definitely helpful, thanks!

 And then she preceded to talk for fifteen minutes about how interesting POTS is and how she's never seen anybody with that, and isn't it amazing how many ways the body has to adapt to things?

Um... no? 

My body is MALadaptive, lady.  It is adapting poorly, not "amazingly."  And I don't care if you see patients like me every single day, or once every 3000 years, could you just stop chattering on and on and actually treat what I'm here for, so I can go home and be sick in my own damn bed?

It was frustrating, to say the least, and the thing that makes it worse is that if I had called yesterday, instead of waiting to see if it'd go away (like a dope), I could've called Zack's office, and the nurse there would've just sent my antibiotic rx right through... I kind of having a standing order.  But they're out of the office today, so I figured the primary care was my next best shot.

Turns out my next best shot would've been attending medical school myself, so I could write out the damn prescription and stick my own little swab down my throat.  Next time. 

  

Thursday, November 15, 2012

Halfway through November

and I hit 25,000+ words.  I'm going to talk about it tomorrow, I hope but I'm still trying to recuperate from various things here, and focus on not whining a lot, like I kind of want to.  (Shots.  Which were fine, but now are acting like I was bitten by some exotic animal all of the sudden. Anyways.)  So, instead of listening to me whine, may I suggest, you take yourself of to a television set and settle in for some Parks & Recs awesomeness tonight?  Special Guest star, Leslie Knope's #1 crush, Joe Biden.  :)  It should be spectacular. 

Tuesday, November 13, 2012

Words, words everywhere

but none to spare for here.

Seriously beat tonight, guys.  Managed to get 5000 (! I'm up to 20,812!) words written for NaNo, but between recuperating from the wedding (which I have stories! and pictures!) and having our family over, and still being sick, not to mention the stupid additional side effects from my new drug, I'm just plum worn out.  So I'll try to remember to write here first tomorrow, so it'll be interesting and stuff. Night!

Monday, November 12, 2012

Fail

My latest drug trial was a big huge fail after one day on it, I had a killer migraine.  The second day, the migraine was better, but I still had a headache and now I had that pins and needles feeling in my arms and legs as if I'd fallen asleep on all four of my limbs at the same time.  But I didn't call Zach until the third day, as pre-arranged, because, if you've started enough drugs, you know sometimes, there's a hump you have to get over.  With the Lyrica, it was like living in Wonderland for the first few weeks.  Some of the other drugs have made me nauseous, others made me super tired (on top of my already exhausted state), one made my sense of taste disappear for a week, a couple of others have done really strange things: I'm almost never surprised.

Except, when I called Zack, he was surprised that I'd kept taking it.  "Why didn't you call me sooner - you don't have to put up with that?"  Um... obviously I do, what world is he living in?  "But it's good that you did, because that tells us something relevant"  To Zack, everything is relevant, even if he can't figure out how yet.  "Mmhmm."

So he called me back after consulting with a neurologist and this is what they come up with: the migraine and pins and needles (some sort of thesia) as a result of that specific drug show that my migraines in and of themselves could be playing a larger role in my whole pain syndrome issue than we've been assuming.  So, new treatment plan: botox for the migraines.  So he says to me, over the phone at like 5:30 on Friday afternoon.

Um, what?  You want me to get Botox for my migraines, which suck, granted, but ... we've figured have been pretty much under control, right?  Wrong.  "Maybe the tension in your neck and your jaw and your nausea are more migraine centered than we've been thinking, and this would help with that." Hmm... that's actually kind of sensible.

"At the very least, it will help with the migraines, give you fewer of those, and that'll be helpful."

Now, I'm starting to get behind this plan.

I have to do a little bit more research first - since a)needles in my b)face sounds c)horrible to me - but I could get behind this, even though I'm pretty sure it'd do nothing for most of my pain.  The fact is my headaches have been pretty deadly lately, so I'll take all the help I can get with them.  But this is just another example of how what you think you're dealing with when it comes to chronic illness is NO WHERE NEAR where you wind up.   

Sunday, November 11, 2012

Heading to a big family shindig

tonight.  Doing my best to coast along on my meds as best I can.  Not working all that well, as having company is a bit of an additional (but awesome) strain.  I am so enjoying having heartfelt people in the house.  Not overly happy, not upset, just genuine people.  People I love and who love me, and who don't totally get it (seriously, Aunt Pam: stop with the patting!), but who try really hard and are on vacation and will stay up all night playing games and talking about whatever we feel like - heavy things and nothing things, and everything in between - and just breathing.  Of course, my dad is still here, and he's like this heaviness over everything, but I'm doing my best to ignore that as well.  I can tell it's a tad bit uncomfortable for them, but I'm not going to be able to just push everything aside and pretend all is fine and dandy, and I told them that.  So, we're grown ups, we're not all getting along, we can be civil, and we're working from there.  In the meantime, aside from that, and the fact that I feel like I'm being given electro-shock therapy (stupid new meds) AND being trampled by horses (just my regular fibro feelings), I'm having a perfectly lovely, agreeable visit.  They've gone off on a Fenway tour, which gives me a chance to get some breathing time in, and I'm giving myself a two day pass on the NaNo, which means a lot of catch-up come Tuesday, but less pressure today tomorrow (since I know my brain is going to be worth nothing after all the drugs I'm going to need to make it through this wedding tonight).  So, talk to you tomorrow, ladies and gents, hope your weekend is going smoothly too.  :) 

Saturday, November 10, 2012

Trying hard

to keep this from becoming a daily NaNo record, but, you guys, I hit 15,000 words today, and that?  Rocks.  Because I did that in spite of the god damn bronchitis, and antibiotics x3, and my mom being sick as well, and two sleepovers, trying to get organized for company and trying to get ready for a big family wedding tomorrow.  Sure, some things fell by the wayside, but they'll be there when I get around to them (eventually). 

In the meantime, I'm going to give myself a big high five and take a deep breath, then put on my gorram bra because that company I mentioned before should be here in the next few minutes.  Bras are stupid. 



Friday, November 09, 2012

We won't talk about what happens to my plans

My words are running at a loss today, sorry.  Major league brain fog.  Every one of the 924 words I wrote for NaNo were hard fought, and I can't guarantee they were worth much this morning, but they're written.  I'm at about 12,300, which is a tad behind, but I'm going to power through, come next week.  (Right?)  At least that's the plan. 

Thursday, November 08, 2012

Got a lot accomplished today

but I'm exhausted now. (Shocker!)  Today was the kind of day when I spent so long making lunch that I was too tired to eat it by the time it was ready.  So, I ate it for dinner.  Eventually.  And it wasn't any special, elaborate lunch either - just roasted vegetables - but between the chopping and peeling (not to mention getting everything else off the only area I can use can reach for chopping and peeling), I nearly had to lay down on the floor in the kitchen once I got them in the oven.   Plus?  Squash skin are like impossible to slice into - I felt like I needed a hatchet.  Or a hammer.

 It was obviously a low energy day, and a high energy activity.  (Probably not for other people, but definitely for me.) 

Aside from that, I did some cleaning in my room, got the floor in the library picked up since we'll be having company this weekend as a cousin is getting married on Sunday, and wrote more than 2000 words for NaNo today. 

So, if I could nap, it would definitely be time for that.  Instead, I'm going to watch Jeopardy! and hope that there are some good categories.  Night all!

Tuesday, November 06, 2012

Definitely not anxious

... but have the election results been posted yet? 

Seriously avoiding most media at this point (have checked the Twitter a few times), because I just can't handle it.  Either we're going Forward or we're going back to the (18)40's.  And, at this point, I can't do anything about it at all.  So, back to NaNo and boosting my word count (up near 8000 words, which is a little shy of where I should be, but still: rocks and kicks ass, so I don't care).  See you on the flip side, readers.   

Monday, November 05, 2012

As if I wasn't doing enough

I started a new med last night.  For pain (of course).  So far, all I'm feeling is that my pain is turned up a notch, but I'm hoping that that's a result of an overextended weekend, as opposed to a medicine that's supposed to help me.  Of course, this would not be the first (second, third, or hundredth) time that instead of making things better a new med decided to make things worse, so I'm also keeping an open mind.  Fingers crossed, mind open, and Zack on speed-dial.  That's the way I'm making it through this Monday, folks. 

Sunday, November 04, 2012

One of these days they'll make it past midnight

Well, after all that build up, Lil Girl conked out on me just past 11:00, which, to be fair is two hours past her normal bed time.  She was totally revved until about 10:45, when we put in our third Disney movie (one thing about kids movies, is that they're generally shorter than regular movies).  She was nearly buzzing "Look how good I'm doing: I'm going to stay up till 1:00, for sure!"  She picked the movie, laid back down on the couch while I skipped over all the previews and just as Belle launched into "As long as there's Christmas"... I look over and she's snoring. 

Oh well.  I tucked her in and headed back to my bed, where I read through the night and cursed the fact that I've got Christmas songs stuck in my head already, and it's only the fourth of November. 

(And if you watch till about the three minute mark, so will you: sorry!) 

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Saturday, November 03, 2012

Getting Ready

for Lil Girl to come over for a sleepover.  Very excited: I have no doubt that she'll make it past her brother's midnight mark from last weekend's Fright Fest - we didn't even make it through one scary movie: the kid wanted to watch The Hunger Games, then he zonked out on me five minutes into The Woman in Black, which - just: no.  I was too sad to watch a movie where kids kept dying.  Lil Girl is another story: I told her we could stay up "all night long", so I'm anticipating a looong night.  It'll be a nice change to have company during the wee hours, though.  (Company and Disney movies... all I need now is to make some brownies.)

Wrote my three pages for today (am a little off target, but so please with what I've written that I don't care about the numbers yet: ask me again on the 28th), getting the blog posted, trying to go into the sleepover with (what I have that passes for) energy & enthusiasim.  I miss her so much, and I'm wicked excited... but I also know somewhere around 9 o'clock, she's going to be wearing on my nerves and we're both going to need a nap.  :)  That's the fun of six year olds: all the energy of a three-year-old, with none of the naps.

See you in the morning ~ hope your Saturday night is as exciting as mine.  (I'm going to think of a name to call you all, but I'm coming up blank:  'the five of you', how's that sound?)

Friday, November 02, 2012

NaNoWriMo

so far, my novel is skewing towards the Young Adult side of the spectrum, which is leaving me with one major problem: Not only am I no longer a Young Adult (at least, not as far as publishing standards go), when I was, I didn't do anything that would be considered 'typical'.  I have no idea what "teenagers" did: I know I spent most of my time sleeping and visiting doctors offices.  Trudging my way through home tutoring and pretending that missing out on social events wasn't a huge deal. (Jr Prom vs. Star Wars marathon with your mom?  As much as I appreciated the effort, I probably still would have preferred the prom.) Busting my butt so I could graduate on time, even though nobody else thought I should even care about that.  Trying to get my family to realize that I was neither a)on drugs, b)pregnant, c)faking it or d) being overly dramatic. 

And so, somehow, I find myself writing (and researching) about a chronically ill teenager - one with more of a social life than I ever had (otherwise the book would be both boring "Today she slept for 18 hours" and too short to meet the 50,000 words), but with some of my experiences and emotions peppered in.  And I'm loving it. 

Even though I had 1330 words yesterday and today I only have 950.  But they're a good 950, and that's more important, right? 


Thursday, November 01, 2012

Here we are in November again,

that time of year when your Google Reader explodes as all the lax bloggers (like me!) attempt to come up with blog fodder for their daily NaBloPoMo attempts.  I haven't decided yet whether or not I'm going to try for that, I just know that I don't want to miss out on my 6th year because I was so stuck in a funk I couldn't even try.  So, I figure I'll try.  Who knows?

The funk, though, man.  It's like Pigpen level, people.  Between the bronchitis and my complete inability to stand people, I have been a joy to be around, I assure you.  I got a ton of things accomplished this morning, however: rebooked a bunch of appointments I missed out on because of the germs that were trying to take over my body, labelled two hundred pictures, bought a couple more Christmas presents (leaving me with like, four people left, which is awesome, and necessary because we all know I will get sick 17 times between now and then, and that severely cuts into your shopping time). 

Started writing a novel. 

I'm sorry? What was that? 

Yeah: I signed up for NaNoWriMo, because I am, apparently, an idiot. No, in truth it's because there are apparently no limits to my ability to procrastinate doing things I really don't want to do, because instead of looking for housing again this morning (because it is so gorram frustrating and near to impossible), I signed myself up to write 50,000 words in the next thirty days.  I'm kind of a dope.  Not that I can't write 50,000 words in thirty days, it's the "having them all go together logically" part that gets me.  I've written a couple of (really bad, no, honestly terrible) novels already, but this will be my first time pressured one, so it'll be interesting to see how it comes out.  So far I have about 1000 words of description on three of the main characters.  I'm surprised I didn't start writing about their shoe sizes, to be honest... Now I've just got to get them to do something interesting.  

So I hope to write here, I hope to write there; I hope to be there more for the people who need me, and figure out how to better ask for the things I need; I hope to find some miraculous new way of affording (not just financially, but physically) my own place; I hope to figure out how to stop being so angry and sad all the time; I hope to dig my way out of this funk and through to the other side, however I can.  November, you've got a lot riding on you, so let's kick ass.

Good luck to all of my fabulous readers ~ may whatever you hope to do in November work out for all of you.  Fingers crossed.      

Tuesday, October 23, 2012

A little health catch-up

Got knocked out of commission by a wicked cold sometime around the middle of last week, and I've been struggling to reconnect with my brain since then.  (Fevers are not my friend.)  It seems like all bad news around here, which makes me not want to write anything because it's so depressing and all of you all have been so great and wonderful and supportive, but who wants to listen to a person complain forever?  Nobody.  Especially if it's not entertaining complaining.  Trust me: there was nothing entertaining about my cold, the sinus infection that followed it, or the fact that every drug I took seemed to make things worse - What the hell, steroids?  Why do you make my fibro flare?


Only thing I can say is that when College Roommate/Best Friend asked me if I would be Baby Olivia's godmother, I said I'd be there in the church 'unless I was in the hospital.'  Which is stupid, because OBVIOUSLY my body takes that as a challenge and is like "Oh really?  Let's see what we can do about that!"  I've got till Sunday to shake everything from the rapid heartbeat to the contagious germs (and, honestly, as long as I've lost the contagious germs, I'm going), so fingers crossed.  Could use a dose of teeny baby magic :)

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On what all the doctors I've seen in the past month (and as I've been cramming them in to make up for all the appointments I cancelled over the summer, that's been quite a few) consider to be the plus side, I've lost about thirty pounds since February.  I guess I should feel more positive about this, except I know that at least half of that is probably attributable to stress, as opposed to the better eating habits (almost no take-out, heart healthy-food, for the most part) I acquired at Grandmother's.  I can't help but feel that worrying yourself to the point of exhaustion, skipping meals (and therefore my meds), or eating three bowls of cereal a day actually aren't the  principles of a balanced diet, but the doctors are so happy I've lost weight that they don't want to hear about those sort of pesky details. 

Still, it has had some positive side-effects: My liver numbers went from somewhere in the 100s to less than fifty; my sugar numbers and Hemoglobin A1C are both at non-diabetes (even non-pre-diabetes) levels again; and I had to buy new bras because the old ones didn't fit.  (I have to buy other stuff too, but I'm poor and the bras are expensive and have to come first.)

  I'm finding the 'no take out' rule harder to handle here at home, where take out is the almost daily norm, plus I'm sick as a dog and can barely manage to eat what somebody puts in front of me most days, but I'm also cutting myself some slack on that because I am freaking exhausted right now and can only deal with so much.  I had a nutritionist appointment last week, and all she kept saying was "keep it up, keep it off."  And I wanted to say, maybe you should be more concerned with my actual health rather than just my weight? but it didn't seem like the right audience for that. Nutrition barely came up at all.  

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I also had an appointment with Zach a week ago, and he kind of shocked me by asking if I thought I needed an anti-depressant.  An anti-depressant is for depression, I thought: I'm not depressed, I'm sad.  I'm mired in (what I consider to be) the reasonable quagmire of grief that comes after losing someone you loved so immensely; I'm overwhelmed with confusion about what comes next after putting my own life (such as it was) on hold to care for someone else for almost 6 months and then watching her die; not to mention being almost swallowed up by toxic family drama and sludge.  "It's only been a month," I said: "It's too soon for me to start thinking about whether or not this could turn into depression."  He looked at me for a minute and then said "It's never too soon, because you have a history ~ I didn't think you needed one either, but I wanted to make sure you were being vigilant about monitoring your feelings - I needed to make sure that you were on alert."

As if I'm never not on alert.

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Promise to be back soon with something not-depressing, even if I have to make it up.  

Saturday, October 13, 2012

Blueberry Pie & Twizzlers aren't much of a housewarming present, but it's all I"ve got

My sister and brother-in-law are moving out today, and I am not ok with that.  We've lived apart before and would have to again eventually, at some point anyways, so it's not that so much as how and when it's happening that is so heartbreaking.  It is, in all actuality, going to turn out to be a positive thing for her, for them: it's a thousand percent in their favor that they would move out of some place that is unhealthy & stressful for them, especially at time where they need things to be as stress free as possible.  I'm three thousand percent behind them, and will continue to try to find ways to make things as stress-free as I can, even if it means hounding my B-I-L for updates bc I know my sister doesn't like to be pestered (He doesn't mind). 

The problem is that I just can't seem to get past the fact that it's so stressful and unhealthy for them (and me) for No. Damn. Reason. Except that people feel like being assholes.  Well, one person in particular, really.  Who is so busy playing the victim in his own mind that he can't seem to grasp the fact that hurting other people is the reason no one wants to talk to him.  Because he's "being nice now."  Like any of us trust that.

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I have avoided talking to the two sisters who grew up with our parents but don't live here, mostly because, since they don't live here, I usually have to hear about a thousand excuses from them about how his behavior isn't really that bad and I should have some compassion for him.  And it's not even that I don't have compassion for him: it's that he's trampled it all, as well as pretty much every other feeling I have for him, consistently over a long period of time. 

The sisters who don't live here seem to forget a) how much they both hated living here when they did - so much so that one left for 'vacation' full well knowing she wasn't coming back but kept it a secret till she was there so she wouldn't have to tell him in person, and the other moved out as soon as she could manage it.  Three times;  and b) exactly how he behaves when you are in his life on a regular basis.  I suppose if you only have to see him at birthdays, barbecues and/or holidays, or listen to him complain that you never call him anymore once every 5 months or so, then he'd be a lot easier to take.  I don't doubt that that is true; I hope it proves true - for his sake as much as mine and SisterJ's.

 It's my opinion that he just can't give up feeling like he's supposed to be the boss, even though we're grown adults (not to mention that he wasn't really the boss in our family, he just thought he was because he was stricter).  And since he can't be the boss in the way that he thinks he should be - i.e. being able to dictate your 'attitude' or demand the respect he thinks he is 'owed' - he tries to bully people instead. 

And, for a long time, we've let him. 

That isn't to say one or the other of us - or a group of us - haven't stood up for ourselves at different points, or demanded changes in our relationships... it's just that when you stop being vigilant about your boundaries, certain people (maybe all people? I don't really know) will notice that you're no longer guarding things that 'do not cross' lines as closely as you once were and will begin to inch their way back over again. 

And I can't keep letting that happen.

So we've got to figure out a different way to interact with each other, and two things will need to happen (from my perspective) before I could even attempt that.  First, he'd have to take real responsibility for his actions - meaning he has to stop thinking it's ok, just because he's stressed out at work, or with other people, to take that out on somebody and start to make changes in his own behavior.  And second, I'd have to figure out how to let go of some of my own anger and figure out how change my behavior so that he can't cross those boundaries anymore: to just accept the fact that he doesn't have to be happy about it, I'm going to do what I need to do regardless. (This is more difficult than you'd imagine when you live in his house.  And are financially dependent upon him.)  

And since I can't make him do the things I think he needs to do, I'm focusing on that second part there.  I'm definitely not on-board with forgiving, just yet.  Don't know when I could possibly get on-board with that.  But trying to figure out how I can live away from here, how I can turn myself into one of the sisters who just sees him every couple of months and deals with that in a more healthy manner?  That's what I'm trying to work on right now.

And I know, eventually, it'll be what SisterJ works herself around to, too.  She's too big-hearted (even though she'd like to say she's heartless) to not want to figure it out: that's why she's so hurt right now, because she didn't do anything to screw it up in the first place, but it still blew up in her face.  So, yeah, I know her leaving is a good thing. 

A necessary thing. 

And, like I said, in the long run, I have no doubt they'll be much happier there... it's just I don't want to be so far away from her when I know she needs me, and it's not as easy for me as it is for other people to just 'pop' in on her at her new place.  (Obstacles, oh how I hate your ever living guts.  Chronic Illness-related Obstacles: goes double for you.) 

But it sucks donkey balls, and I can't help being pissed off at him for it.  He's just going to have to get over that.

Saturday, October 06, 2012

Hi Again

I know it's been a couple of weeks ~ I'll claim the first two do to just complete exhaustion, and the last two because things are pretty fucked up here, and I'd hoped to come back and be able to say "Thank you so much for your kind thoughts" and then move on to happier things.  But I don't seem to have any happier things, right now.  Which is not just to say that I'm f'ed up (although I am): there's a whole bunch of family shit that's gone down that's beyond messed up, and somewhere between my grief and the situation and everybody else's grief and confusion and all of our individual issues, it feels like my family is basically coming apart at the seams.  Not that those stitches were all that tight two months ago, but they just sort of burst the week of my grandmother's funeral, and I'm at a complete loss as to how to pull them back together again. 

I don't even know where I am or what I'm doing,  at this point, besides making it through the next fucking minute without falling apart.  And I'm not always doing a bang up job on that, to be honest.  I'm back at our house, but it's not home - it really never was, only maybe I was better at pretending before I watched my grandmother die and realized that I need to do more than mark my time here.  I can't seem to talk to anybody without causing a secondhand fight, can't seem to get anybody to listen to me at all, can't seem to connect with the people who've offered to help, even when I want to (and I don't always want to: it seems like too much explaining, mostly).  I feel like exploding just about every minute of every day, or, I feel completely absent and numb - it's one or the other, seems like.  

My dad threw my sister and brother-in-law out of the house, the night before my grandmother's funeral.  Nobody told me what the hell was going on, because, I don't know they thought I would be too upset to notice that people weren't talking to each other?  I don't know.  So I got the lowlights third and fourth hand, then when I tried to talk to people, it was a disaster and didn't make anything any clearer for them or for me. 

My mom left my dad, then came back, but only because she didn't have anywhere else to go, and then, later, because she wouldn't leave my sister and brother-in-law in the house with just him.  This was all in the days immediately after we had just buried my grandmother, so I will admit that I did not have all cylinders going.  I mostly wanted (still want) to curl up in a ball and ignore everything, because it takes so much energy, and I am plum out. 

My dad says the stress of being targeted at work (and, yes, he is being targeted at work) made him snap and... a whole load of bullshit that basically means it's not his fault, but maybe yes, he might admit that he was wrong and 'an asshole' (What he won't cop to, is that this happens All The Damn Time, and nobody feels safe around him/trusts him anymore because he's a bully).  My sister & brother-in-law immediately started looking for a new place, because, hell: who wants to live like that?  They've been thrown out twice in the matter of a year for Doing. Nothing. Wrong.  And let's be clear - they didn't do shit, he just took it out on them.  I told my mother while I was still at Grandmother's house, that I didn't want to be here either... that I would be looking for a new place as soon as I could. {Of course, that was because I forgot that I couldn't place emotional well-being above money, health and other issues without there being major sacrifices of money and health and other things, but I'm still determined to do it}  My mother told him she was leaving too, although it would be better for everybody if HE just left.  He refused/refuses to leave.

So today my sister and brother-in-law are signing a lease for their new place, at the worst possible time for them bc my sister is trying to wean off her meds so that they can get pregnant, and she could really use some backup (which is just when you should be forced to move away from people who can back you up).  She's hurt and mad at my mom for her response to this whole ball of bullshit, which I can't seem to talk to either of them about, because their both freezing me out when it comes to that.  She might even be mad at me, and since she's the one who reads this blog I'm only going to say that I hope she's not, because I feel like I'm on her side, but if she is, I hope she'll tell me so I can try to fix it.

My dad and I had a whole discussion about how mad I am at him the other day, and how it's his fault that SisterJ & B-I-L are moving and that I'm looking for a place, and that Mom is probably looking for a place too, and when my mom asked him what he got out of it he told her that he "has a big heart but doesn't use it."  Which was said once, in the midst of a three hour discussion about how badly he is screwing things up and all the things he is ruining by his behavior, and how hard it's going to be once he realizes how badly he's damaged people he's supposed to care about and how I'm too old for this shit and I'm just not sticking around anymore to watch him bully people (or to be bullied) and how he's being completely selfish, but that's what we all expect him to be at this point, so that we don't even talk to him about our shit anymore and a huge rant about how he's a total hypocrite and totally ignores the people in our family and expects us to be there for him and how he never fucking listens ... anyways.  What he took out of all of that was me saying he had a big heart, which just proves my point about him never listening, and that I really need to get the hell out of here.

Mom and I have talked - or sort of talked - about what she's going to do: she says she's going and she's done, and all of that.  But I don't know: she still seems undecided to me, and I don't know how much of that is the fact that she's changing her meds, and she's still grieving for my grandmother, too, and she seems to be leaning waaay closer to the numb side of things than I am.  Of course, complicating all of that is the fact that she's my PCA, and she does a lot more for me than the hours the state provides for her, which is pretty simple when you're living in the same house, but a hell of a lot more complicated once I find somewhere else to live.

Which doesn't even mention that moving changes everything for me, financially - I have to notify the SSI people, and Mass Health (my insurance) and the PCA program, and everybody does a whole new evaluation and yippee: more energy I don't have.  Plus, I can't afford any place to actually live on what my SSI is currently, so I have to apply for housing stipends, which means that the already complicated task of finding accessible housing (and granted, I can use non-100%accessible bathrooms, which puts me a step above other househunters with disabilities) all that much more complicated, because now I have to look for accessible housing that takes waivers/stipends from the government.  It's so much fun so far!

But here's the thing, as every fucking thing seems to crumble around me (which you could tell only by the fact that I've cursed like five times in this post, when I usually don't ever), I learned a lot about myself this summer, being with Grandmother during those five months.  I learned that I can handle a lot more shit than I thought I could, even if I have to breakdown in tears when nobody is looking.  And even if I shouldn't have to handle any of this, because it's all ridiculous and I don't want to have to deal with it, because it's hard: even though it's ridiculous and hard and stressful and I Don't Want To, I'm going to be able to do it.   I'm going to drag myself and my family through it, and eventually we'll all come out the other side, having met the challenge.

Being a grown-up sure does suck, you guys.  

Monday, September 10, 2012

A tree that looks at God all day, And lifts her leafy arms to pray*

I started this post a week and half ago.  Here's what I wrote last Sunday, immediately after a moment of Grace ~
In the middle of transitioning her from her wheelchair to her bed after this morning's bathroom break, she suddenly stopped what we were doing, looked at me and said "Goodbye dear."  I wanted to hurry her along, get her safely in bed, so I started to joke, would normally joke "where are we going?" because lately she'll say just about anything at anytime, but something about her tone was different, so I looked up from what I was doing.  I looked right at her, and she was there.  She was in there, somehow, in the midst of enough drugs to be hot air balloon-high, she was lucid enough to offer me this.  "Have a good life", she told me, reaching for a kiss.  "And no matter what, no slander from you, no slander from me.  We'll just be happy for the life that we had these three months."  I swallowed back my tears and said "Yes ma'am. Never: I love you."  "And sometimes say a prayer for me."  "Always," I said.  It was all I could say, even if I could have managed more (and there was so much more I wanted to say: I have nothing but good things to say about you, forever.  I'm not going to let these last few months smear your memory, and I know in your heart you know how much I love you.  I'll miss you.  Don't go.) she had closed her eyes again, and you could see the cloud was back. 

Now this is not miraculous, you might say, but you would be wrong: for days, in the rare moments that she hasn't been completely knocked out, we've been talking about eating butterflies and dinner parties that happened in 1969; she's been (her version of) cursing out my Uncle and I for holding her prisoner here, when she just has to "go or I'll scream"; she's been in near coma-levels of sleep for the most part, waking only when her anxiety or pain levels break through what the meds can control.  She hasn't really been lucid in over a week, hasn't been aware like she was for those three minutes, in weeks to months, really.  So those three minutes?  More miraculous than any other I've been lucky enough to live through.   

Tiny miracles: I'll take them. 

Especially now ~

 My grandmother, a great lady, wonderful mother, open-hearted, strong-willed, surprisingly versatile woman, passed away on Saturday afternoon.  She had been having some trouble breathing earlier that afternoon, so I adjusted her oxygen, gave her her medicine, offered her a weak smile: "Don't give me that fake smile", she whispered in her all of the sudden raspy voice, "You look exhausted."  "So do you," I said "Get some rest."  And then she went to sleep and I laid down on the couch maybe 5 yards away. 

A half an hour later, my uncle went in the room and called out to me: "She's not breathing; I think she's gone."  Her hands were cold, but the rest of her was still warm, that's how recently she had passed.  Within a half an hour from the time I had been holding her hand, getting scolded, giving her a kiss.  She went quietly - I never heard even the tiniest gasp - a peaceful end after all these months of drama and unrest. 
 
 Thank you all for all your support these past months: I can't express just how much it means to me.   For listening to all the ranting about dementia and how much I hate it; about the pressure and the heartache and the loneliness.  I know it's been a dark blog as of late, because I had very little else to talk about, and I appreciate all of you who said even the smallest words of encouragement - I needed them more than I could say.

I don't really know what happens now: I'm feeling such a mixture of relief and sadness and numbness that I can barely get the simplest of tasks accomplished... I know that'll wear off as the days go on.  Her memorial is Thursday & the funeral on Friday, and I'm trying to get everything organized for all of that: it's good to have things to focus on... a project to complete.  I'm going to do that for now, and think about how lucky I have been to have her in my life, for as long as I did, even through these last hellish months.  To have held her hand right before she left this world, well, that's not something I'll ever forget. 

*Trees Joyce Kilmer: a line from Grandmother's favorite poem. 


Thursday, September 06, 2012

I would be a horrible circus performer (although I am quite flexible)

I didn't realize that my being here would change so many things: I mean, when I first wormed my way into an invitation to stay on the couch, I obviously didn't realize that nearly five months later I'd still be here, unshowered and mid-flare, keeping constant watch on a woman so close to death.  I signed up for that, for the most part, because I had to: nobody seems to get that, really, that I feel compelled to be here, not just because I am capable of it (and, honestly, physically? I'm not capable, I'm just faking it the best I can), but because it's where I need to be.  I suppose I could have made a different choice, but every other option just felt worse than this one, so here I remain, camped out on a couch with a (probably permanent) me-shaped dent in it, edging the furniture over until it gives me just the right view of her on her sickbed. 

While I could not have predicted the ways that being here has altered my relationship with Grandmother - both negatively (particularly through her attacks during her dementia rants or just witnessing little character flaws that she'd previously kept hidden from me) and positively (there have been moments of extreme joy for both of us) - I'm more surprised by how being here has effected my relationships with the rest of my family, the rest of the world.

Example: I've got an aunt who lives less than an hour away, and who I generally have a good opinion of.  But her lack of visits (once every three weeks, maybe) and phone calls (I know Uncle Jack is a bear on the phone, but suck it up), especially since her mother's latest downturn in health bother me. What could be more important than this?  What enables you to go sit at a racetrack all day on your day off, as opposed to sitting by your mother's side?  Granted, Grandmother would probably have no clue who you are, and granted you have a right to your life outside of the fact that your mother is dying, but ... it still bothers me, and I know it's put space between us.

I try not to let it hurt me that people haven't come to see her, but sometimes I resent it a whole damn lot.  Cousins who send me messages about how much they care, but don't show up on the doorstep with a screwdriver and a willing hand when it's needed.  I'm conflicted about it because it seems wrong and hurtful and false, but also because.... I totally get it.

I keep hearing "I don't want to see her like that" or "I don't think I could handle it if she looked at me and didn't remember me", and I understand that desire so much.  I guess I'm jealous that they feel like they have the option to not come, whereas I feel like there's no choices to be made - she needs me, so I am here, even though it is one of the hardest things I will ever do.  To have her look at me, with that blank stare, or worse her evil stare, when she's pissed off about something, is an experience I would love to have opted out of; it's something I wish I could forget, and something which, no matter how many times I remind myself that it's not her but the dementia that's driving it, I know has put smudges on our relationship.  Deep, dark smudges I would give anything to erase. 

So I understand the sentiment, and I understand not being able to face what's going on here - but I'm still disappointed that so few people have turned up, that so many of us are able to just send their warm wishes, but not put any actual effort into it.  I'm jealous that they can do that, I'm confused at how they do that, and I am surprisingly more than a little hurt by how many of them can do it.  I think that's part of it: that I used to be so firmly a part of the "us" of cousins, and now I feel like there's this line, a "me" and a "them", because I've done this and been here, and none of them can truly understand.  They write their e-mails about how strong she is, and how much she's been through, but they don't know the half of it.  They say how they hope the end comes quickly and how she doesn't suffer, and I stuff the words back into my mouth: 'She's already suffering, she's been suffering for months, maybe years, and none of you have noticed!'

 It's not fair of me to think those things: I know that they are all doing what they can, and that they all do really love her: it's just that right now - living through the worry of each and every breath, each consistently lower pulse reading and oxygen level,  each english muffin I put in front of her that she doesn't eat, each 4 hour battle to get her to use the Depends because she's not strong enough to get out of bed - right now, everything they say seems like a platitude, a cliche, as disconnected from her and me and our actual situation as if they were talking about how many sheep there were at this year's state fair.

It's just another barrier between me and the people I love, and it somehow grew while I wasn't looking.

Which is another thing: I've been nearly myopically focused on our situation here.  I think that's understandable: death trumps pretty much everything.  But there's a lot of other things going on - a lot of other things - and I'm barely on the periphery of stuff that I normally would wade right into.  People are worried about losing their jobs, having their first panic attack, looking for new places to live, buying cars, getting fired, losing weight, gaining weight, dealing with depression, having birthdays, trying to embrace happiness after hardship, going back to school, moving across the country, ending longterm relationships, starting new relationships.  Two of my sisters have changed life directions and are actively trying to conceive - or are moving down the path towards having children. 

Two of my younger sisters.  Are trying to have babies right now.  Which is so exciting and awesome and terrifying, and also like an arrow straight into my chest.  Because there's that baby thing again, which I have been actively avoiding (with little luck) and just do not have the mental energy to deal with right now, but there it is, everywhere I look.  College Roommate/Best Friend had her third baby yesterday, after a difficult pregnancy.  One of the (young stupid intern) doctors who saw her in the Emergency Room wrote the words 'advanced maternal age' on her chart.  We are the same age, and while I know that 33 is not technically considered advanced maternal age, I know it's also not considered to be a time when you've got plenty of fertile years ahead of you.  So there are all my own issues with TTC, and then there's all of their issues with TTC (which are varied and complicated, as they seemingly always are) and how best to support them (because I do want to support them) through their own insecurities and doubts and troubles.  And how to do that effectively with the 5% of my brain that isn't focused on Grandmother and her medication schedules, stuck here in my little corner of the living room couch, while at the same time not letting the fact that I am not actively TTC be a gaping wound that grows between us.

Life is going on all around me - everywhere but in this house, in this time, in this space that I can't leave - and I don't know how to participate in any of it.  Everything else seems unreal to me, everything beyond this door, everything outside the range of the Darth Vadar sounds coming out of her oxygen machine seems as if it's happening to somebody else, like I'm watching it on television, maybe.  And it's interesting, and it's something I want to be involved with, but my brain just can't seem to make the leap from Here (and all that implies) to There (and all that implies).

There's a big gulf between me and the rest of the world - the part of the world that isn't changing their grandmother's diaper (and sheets - why don't those goddamn Depends do what they're supposed to do more than 1/4 of the time?) at three in the morning, or watching an old woman's chest to make sure it's still rising and falling - and I don't know how to bridge it.  Phone calls and text messages seem like communiques from far off lands - someone shows me a picture of a fancy new car, someone else just says hello, there's a Facebook message from a far-away cousin, a phone call from someone I didn't even know had my number - I want to grab onto those things as if they were life preservers, use them to help keep me afloat when I feel like there's so much here that it will drag me under.  And I can't decide if this is the Real World, or that is (even though I know they both are): I just know that they don't seem to exist within the same atmosphere, in the same time zones, on the same planet.

This disconnection is even harder when I do get a break, when I'm sitting face to face with someone, and there's all these awkward pauses, all these spaces and cracks in our conversation that there never used to be.  I feel like I am rusty at speaking to people, even those I talk to everyday: It's as if my conversational skills have deserted me in favor of the ability to withstand the tears of a ninety-five year old woman when you tell her she can no longer walk - and there's no ease to any of my relationships right now, no settled in feeling of comfort and compatablitly, even with those that I am the closest. 

Example: Mum will come over to help - most days she comes over to help - and make a misstep in her delivery - do something that pisses off Uncle Jack (which isn't hard) or say something to Grandmother that confuses her and sets off the panic train (which also isn't hard) and instead of relieved, I wind up feeling exhausted to be dealing with that, that now I not only have to deal with the repercussions of her visit, but also have to somehow not hurt her feelings while I'm repairing the damage she did by trying to help.  It's often awkward and uncomfortable (mostly because Uncle Jack is a stubborn ass sometimes and he's so set in his ways that even people doing nice things - like bringing over a boatload of food for us to eat - can make him angry) and I find myself having to hold back how upset I am by it in order to smooth it over on both sides, wishing the whole time that I didn't have to play referree to supposed grown-ups, that it would be nice if, once in a while, I could get some actual HELP, that was just help - no strings, no messes to clean up afterwards, no complications - just simple help. 

Most of the times I can't get up the energy to feel anything besides terrified that I am going to do something wrong here, that the last memory Grandmother will have is of a frustrated woman struggling not to yell at her to 'just pee already, goddamn it!' instead of a peaceful, loving face.  And I want that for her - for her to go knowing that We All love her so much, knowing that she has so many people praying* for her and thinking of her - and I'm horrified that I might not be able to provide it. 

*That's a whole 'nother area where my conflicted feelings are doing battle: she's very religious so we've had a bunch of priests come by, and she's had the last rites more than once, but I also think if the hospice people tell me that "all we can do now is pray" one more time I might punch them in the throat. 

When I do get beyond that feeling, I feel guilty for wishing this were over, guilty for seeing each peak and valley as just another obstacle for us to overcome -It's especially hard to know that when she does have a 'good day' or make a small improvement, instead of rejoicing for her that she's able to eat a half a turkey sandwich, there's a part of me that wishes it wasn't happening, because it's only prolonging something that is already so difficult for all of us.

I feel guilty for that, for wishing that there would just be an end to things, knowing what that means in reality.

I feel guilty for being here, when I'm needed elsewhere.  For missing out on the summer adventures the kids and I had planned,  for all the hand holding I haven't been around to provide, the two a.m. phone calls I couldn't answer.  I know the world doesn't revolve around me - that me not being at the house for sleepovers, for example, wasn't the end of the world or a crisis for the kids - but that's a two sided-coin: I'm glad that my absence didn't wreck everything for everybody, but at the same time I'm hurt by how (seemingly) easily I was removed.  Because it feels like I'm the only one who's upset by my missing out on other things - everybody else just goes about their days and sometimes remembers that, in the ordinary scheme of things, I'd probably be involved in this particular activity too, but it doesn't do more than blip on their radar before they're off for other things.

And how selfish of me is it to admit that that hurts?  That not being needed or missed in those other situations is hurting me as much as the fact that I'm missing them in the first place?  I obviously want it all at the same time - people who love and miss me, but make do when I'm not there; being needed and valued for what I feel I contribute, but being able to not contribute those things for a while and still be loved and valued. 

Basically, my brain is a big toxic mess right now, and I've got it all as far down as I can get it - so that it's simmering somewhere in the background for now, because I have only enough energy (and barely that) to make it through each day here, and the rest of that shit is going to have to wait its turn.  And there's a very large part of me that is anxious about what will happen when I'm done focusing on the immediate crisis - how I'm going to pick up all those simmering, boiling pieces of myself and glue them back together into something that resembles a human being - but for now, all I can focus on is converting Mgs to Mls (which is stupid: doctors should write the Rx in the dosage of those little droppers and not expect me to do math every time I've got to give her meds in the middle of the night) or if the sheets are too tight around her feet and could be causing bedsores.  I know that the end of that type of worry is fast approaching, and I see the train full of other worries barrelling down the track towards me (and know that it will be loaded with all of the things I'm talking about here PLUS a huge drowning dollop of grief once she passes), but I can't even pretend to deal with it yet.


 I'm just going to sit here and breathe, and hope that I'm doing what I can, and that any of the balls I'm not actively juggling will not be too damaged when I get around to picking them up.