Wednesday, December 24, 2008

Tuesday, December 23, 2008

Welcome Christmas

fah who rah moose.

The Whos are in Who-ville, and I am in bed watching them. Cookies are baked and presents are ... mockingly unwrapped but there's always tomorrow. Our Christmas Eve looks to be a low key day, so I hope yours is as peaceful as you'd like it to be too.

Monday, December 22, 2008

Made cookies today

and rejoiced that this is our last Christmas with the ridiculous oven. Time for cookies is supposed to be between 8-12 minutes, right? The first ones took 22, and the last ones took 14. The banana bread was in the oven for... about 2 and a half hours. Seriously.

Lots of things I'm going to miss (and am decidedly NOT thinking about today), but this stove, sure ain't going to be one of them.

Sunday, December 21, 2008

My Tivo and I will be happy, regardless

It has not stopped snowing here since 1:00 on Friday afternoon, which, by my count makes it 56 hours. It is beautiful to watch, but that is because I am not the one who has to shovel it. My job, as relates to the snow, is to put out clean towels (and warm ones, if possible) for the people coming in. If I am up to it, I also put on the hot water (although nobody has used it yet: it would be the one time I didn't put it on that they'd come in wanting tea or hot chocolate or some such). The little tree in our front yard is covered tip to root, and has no underneath at all: only snow. We've got well over a foot, I should imagine. A lot of schools are closed from now until the 5th of January... no sense heating up the school for a possible half day on Tuesday. Come the end of June, there'll be some grumpy kids (and grumpier teachers), but that's a worry for another day.

For today, there is a Tivo who automatically records everything with the words "holiday, Christmas, or special", and that leaves me with a surfeit of wonderful Christmas movies and specials to watch. Not to mention the ones we already have: tomorrow is to be Love, Actually, the Muppets, and all the old Christmas cartoons that we taped off the television for the past 20 years (complete with vintage commercials! There's M&M commericals, people!) and present wrapping. That's an almost perfect day in my book, peaceful and calm, little energy required, plenty of resting as needed.

I hope wherever you are - snowed in or not - you're enjoying your Sunday, taking what peace you can find. And if today begins the holidays for you and your family, my very best Hanukkah wishes.

(Oh, and in case you don't have videos or Tivo to keep you company, check out the entire week's posts over at the Collective: they've got a lot of fabulous YouTube clips up, which basically include my entire playlist for tomorrow.)

Saturday, December 20, 2008

Is there some sort of reason that people consider Groundhog Day to be a Christmas movie? I found 2 clips (so far) on YouTube that include Groundhog Day in their Christmas montages... I don't get it. I think it's pretty clear that that is, in actuallity, a GROUNDHOG DAY movie. In fact, it is the only Groundhog Day movie I can think of. So let's not gyp Groundhog Day, here people: let it have its one movie - Christmas has plenty of its own to chose from.

Friday, December 19, 2008

We got about 6-8 inches of snow today, and, while the heaviest stuff is done, it's not over yet. Since I don't have any plans for leaving the house, I say "bring it on". We were out when it started, and I realized it must be at least two years since I've been outside while it's snowing - probably a lot longer than that, but I know I wouldn't have done it purposefully last winter, and I can't think of any that might have happened otherwise. Today it was just coming back into the house at the very beginning of the storm, with about an inch down, all white, crisp and powdery.

It's a fresh kind of feeling, at first. Everything's so quiet and hushed.

Nature and I were never bosom buddies, but there are times I miss simply being able to go out and just be. To feel snowflakes melt as they hit my cheeks or to watch clouds float by in a bright summer sky.

So although I was soaked through getting the 40 feet from the driveway to the door, it was kind of refreshing - something different to add to my day.

And then I got to watch everybody else from inside with all my heating pads and blankets, so that's pretty damn good too.

See you later, alligators. I'm off to watch the wind die down.

Thursday, December 18, 2008

Took the kiddos to see Santa today

and nobody cried.

And a bunch of us "grown ups" managed to decorate the tree tonight.

And still, nobody cried.

Even if it hurts,

That is a good day.

Wednesday, December 17, 2008

Stark Numbers

For a few weeks now, I've been seeing a behavioral specialist that my new primary care doctor recommended. At our first appointment, I told her that I was looking for new - to me - ways to manage my pain, up to and including heroin. I may have been joking, but I'm not entirely sure I will be able to say the same three weeks from now if this pain continues unchecked as it has been. (Yes: the Lyrica helps. It helps so marginally, though, that I'd stop taking it if that margin wasn't the difference between "needs to be committed because she can't stop screaming from pain" and "is able to limit screams just to when people touch her".) So she recommended a behavioral specialist that helps people with chronic illnesses find new ways of coping with the pain. I probably still would have preferred the drugs, but I went anyways. I went because my pain and I? We're so tangled up together that there's really no separating it from me anymore, and I just don't want to live like that: it isn't how I need my life to be. So, if it isn't going to get better/go away, then I need to deal with it better, because I feel sometimes that it is swallowing me whole.

The specialist is actually part of a group, and since I couldn't see her, I'm seeing an intern, who I really like. She's very nice, and has managed to - in the two sessions we've had - grasp what I am trying to say even when I feel like I am babbling like a fool. We talked a lot about how I am managing (or not managing) the challenges of living with chronic pain and illness, and she's going to see what she can do for me as far as additional strategies go. At the end of our last session, two weeks ago, she gave me a homework assignment, which was to track my pain. She gave me a week's worth of worksheets (she was sick last week, which is why I didn't have an appt.), and told me to try to circle a number for pain every hour I was awake.

This is not a new experience for me: in 14 years of dealing with this, if I hadn't have somehow tried to keep track of good days and bad days by now, then I don't know that you could call me very smart at all. But it's been a few years since I've done it, in that way that things come up - babies get born and start wiping poop on your face, houses get sold and you have to pack all your belongings up in under 2 months, grandmothers get sick and die in the same short time period - and you get too busy to do more record keeping type stuff. So, I had no problem doing it again.

I think, a lot of the time, that the people in my life are confused about my pain: they think I'm either exaggerating or that it can't possibly be as bad as it sounds. The thing is? I know that I actually understate the whole thing, so as not to spend each day focused solely on myself, so that I don't seem like a constant complainer who nobody ever wants to be around. I try to only grimace when Lil Girl hugs me or my uncle pats me on the back, rather than bursting into tears, which is how bad it truly hurts. I try not to moan every time I move, like my dad does when his back is killing him, because I hate that! I try to keep the whining to a minimum; try to do for myself when I can so that when I can't someone is willing to help; try to make my life as ordinary as it can be.

But the truth is?

During all of that, I am in pain. A lot of pain.

Always. It doesn't go away, not ever.

When I go to the doctor and say "I can't remember a pain free day. I don't remember what that feels like anymore." Or "my pain is 7 out of 10 - on a GOOD day," I am not exaggerating: that is as honest as I can be.

But I can't explain how I do manage to get up and get dressed (some days) and watch Lil Girl or try to go shopping or scrapbook or make cookies or any of the relatively small things I do that make up my every day. I can't explain it satisfactorily to myself, let alone to other people. "If your pain is that high, if you're really not sleeping more than 2-3 hours a night,you wouldn't even be able to function" a family member said to me recently. And the truth is? That sounds right to me, but I know it's wrong: I make it through my days, doing what I can do, living with what I can't do, because that's what I have to do. I don't have a choice - it's just the way it is. This is the functioning I am able to do, so it's what I do.

The pain is not going to go away if I wait long enough; the fatigue isn't going to get better no matter how long I rest (3 years of sleeping 18 hours a day certainly cleared up that mystery for me), and time is going to pass, life is going to move on whether I do anything or not, so I do what I have to do.

And now I'm wandering away from my point (there's a point) more than a little.

My point was that seeing my pain quantified in those little charts (which, because I am sad, I have since converted into an Excel worksheet. Complete with graphs. Seriously: professional student much?) was a surprise to me.

Not that I didn't know the actuality of living my life, but seeing these numbers? Has really brought up a lot of conflicting emotions for me.

It's made me angry, because I see how much of my life is really consumed by pain. There's no real emerging pattern, which drives me crazy. It's so frustrating to see it all in black and white (and colors: wait till you see the colors) because I just want to erase all the high numbers and start over. It's also made me really conscious of the levels of pain - having to seriously consider where I was at, every hour, made it more possible to see all the different yet subtle ways I was feeling better or worse.

I want to print it out and stick it on the refrigerator, or e-mail it to everyone I know or ever met and be like: "See?!? This is what it's like to be me: This is what I'm dealing with. Look at all those 5s and 4s!!! Now ask me again why I'm not working but instead 'sucking up your social security'!" At the same time, I want to hide it... I'm a little bit ashamed of it, that it's gotten this bad. I want to ignore it, to not have to face it.

It makes me want to cry - with grief, because this is my reality and there is no ignoring it and with relief, because I'm not going crazy, it really is as bad as it seems.

And it makes me hope, really hope, that when I go in for my appointment tomorrow, she'll have some magic up her sleeve. It's the season for miracles, right?

Tuesday, December 16, 2008

Last week there was a major ice storm

and my family and I were largely unaffected (SisterS up in NH lost her power for 2 days, but the only real loss there was their fish: IDK why she didn't just put them in a bowl of clean water or something... it's beyond me). Others are still without power, nearly a week later.

And tonight the weatherman tells us that it is going to snow three more times in their little five day forecast:

Starting, oh about now, and lasting till noon tomorrow,with most of it being washed away but tomorrow night.
Again on Friday, with a much higher chance of a couple of inches sticking and staying stuck for a while.
And then again on Sunday, which he happened to call a "likely nor'easter."

This is not reassuring to those of my neighbors who are still waiting for the National Guard to get the tree limbs out of their street. I love to watch the snow fall - it's peaceful, and since I don't get to leave the house much, it gives me the feeling that other people are also comfortably ensconced beneath blankets, watching it drift down while they drink hot cocoa. Of course I know this is a false belief, as most people still have to leave their homes, regardless of snow, and are therefore toiling beneath heavy coats and hats, shoveling and scraping to get their cars out, but I still like to think it.

Plus side: chance of a white Christmas climbed to 85%.

You never know.

Monday, December 15, 2008

Our house

(or rather, the new preschool's next location)

smells so freaking good right now.

I love Christmas trees.

(at least as much as I can till it gets overwhelming and I have to shut the door, but that for the first day or so, when it's REALLY strong.)

Sunday, December 14, 2008

Not what you expect at a birthday party, that's for sure.

So we had a big Clump Pt 1 party today (with about half of the clump being born between November and the end of the year, and the other half being born in January or February) and it went alright. I wound up doing too much, trying to run things that I should let other people run, but at least today I realized I was doing it and made myself take steps backwards. It's tough, though to see Lil Girl and Youngest Nephew behave so differently when their parents are around and not want to step in and say "No: that's not acceptable - at least not at our house!"

From the unexpected developments category, however, comes the following anecdote:

There's about 8 of us sitting around the table playing bullshit, when SisterCh looks over at the bedroom door and asks "Why is that door opening?" It shuts immediately, but I've seen the little face and the tiny fingers that caused the opening/shutting and am stunned: those little fingers, that little face belong to a little girl who is supposedly napping.

In her playpen.

That's right, Lil Girl had climbed out of her playpen, I still don't know how. All she could tell me afterwards is that she "Jumped". I don't think that's exactly the right word, but it certainly tells us that someone is ready to nap on a bed (which we haven't done before because this is a child who needs boundaries and the edge of a bed means very little. However, if the walls of a crib are also going to mean very little, the edge of a bed is a safer useless boundary.)

Oh, but wait: that's not all.

I went in to try to get her to go to sleep, and rather quickly figured out the reason that she wasn't sleeping: A pungently poopy pull-up.

Which she had left in her playpen, before her "jumping" out.

So, there she is bare-assed, and she says "I did pee pees" and let me tell you that I almost panicked, thinking about all the places she could have peed in my parents' bedroom, before she proudly towed me to the "big girl" (toddler) potty that is in there.

She had peed, so I put her up on the bed, and wiped her, got a new pull up on.

Surely that is the happy ending to our story? No? No.

I shut off the light and tried to get her to lay down again. She sat in my lap, and we rocked to the lullabies, and she gently caressed my face.

The odor of the poop was still pretty strong, though, so I asked her if she'd pooped again. "No."

I played with her hair, she played with mine.

Still: the smell.

And then a terrible thought occurred to me:

"Lil Girl, did you touch the poo poo with your handies?"


A big sigh of relief....

"No," she says, wiggling her hand in my face: "just my fingers."

Saturday, December 13, 2008

Did you know?

People, did you know that there's a poker app on Facebook?

Did you know that I have no time to play endless poker games on Facebook? Even if I am playing it at 4 in the morning after another long night of not sleeping.

Did you also know that I had 3 Aces? And quadrupled my (fake/Facebook) money in the course of one hand?

Yeah, I just thought you should know that.

Friday, December 12, 2008

Just a random idea...

Dad Gone Mad has commenced Operation Comment your Balls/Boobs off (depending on your gender), and I think it's a fabulous idea.

So if you have time, don't forget to spread some comment love.

Thursday, December 11, 2008

A small freak out, which you can feel free to skip, followed by more bad news

So we do in fact have a preliminary buyer for our house: there's still an inspection to get through, but the house is damn old and we already told them that, so hopefully it won't turn up anything too surprising.

And while this is good, this is a good, good thing, it is also horrifying and panic inducing. I'm freaking out a little bit, and there's this ball of tension in my belly that's amped waaaaaaaaay up, mostly because, pending inspection, we're expected to clear out by February the 23rd. Which is basically, two months and two weeks from today.

We do not have anyplace to go once we leave here, and that, my friends, is a terrifying thought. I'm afraid of how fast my parents are going to burn through that money: if we find a permanent place to live right away, I'm worried about how much a mortgage is going to cost and how my parents haven't paid rent, let alone a mortgage in over 25 years, and how they're totally not being realistic about how much we're going to be spending now just to live somewhere. And about how my less than $500 a month isn't really going to help out all that much there.

If we don't find a permanent place right away (and we haven't in the nearly a year we've been looking, since there's so many constraints on what we need, let alone what we'd like), then how quickly are we going to go through our money renting some place accommodating enough for us (ok - me), and how will we ever be able to make that money back?

I'm really working very, very hard at not freaking out about those things, because they are, in very large part, beyond my control: we're looking, we'll have to go someplace, it's just that there's so many unanswered things right now and I HATE THAT.

I read a lot about people who can look at these sort of things - these challenges and changes - as adventures, and these sort of people - even the real life people whose blogs I read - take things as they come and don't really worry excessively and somehow it all turns out alright. I would give anything to be one of those people, but I'm just not.

I'm trying to see this as optimistically as possible, but there's also the reality of what's happening, and that is this: in two months and two weeks, unless we do some very hard work very soon, we will have nowhere to live.

Nowhere to live.

If that isn't scary to you, then I don't understand how your brain works. (Obviously).

Now, granted, I don't think it's possible that we'd wind up living in our van (which, also, sadly is deciding it should fall apart little piece by little piece, lately), but it's like my parents are living on a cloud of denial where our dream house is going to be A) affordable, B) immediately available, and C) Right next door! and so I feel like the less they are able to face reality, the more I have to think about it.

Not that thinking about it is doing me any good, because honestly, what good is worrying about it here going to do? I just need to get it all out of my head for a little bit, just put it here and LEAVE IT HERE for a while.

We are working hard - looking at houses and more houses and more houses, farther away than we want, really, but maybe our best option at this point. We're looking at two families to own and one families to rent; we're looking at long range hotel rooms and another storage container. (Confidentially, I've even looked into independent housing for myself, even though I know I'm not up to it health wise, but all of the housing for people with disabilities around here just isn't appropriate for me: I don't need most services, don't qualify for some I could use, and can't live in a group environment where someone else is making the rules about smells and chemicals and whatnot.) We're doing the work, but the answers haven't presented themselves yet, and I'm just not a "leave it to the universe" type of person.

The universe has screwed me on more than one occasion, you might recall, so I'm not exactly sure it's looking out for our best interests.

So, with all of that in my head, I sure am glad I have this place to just spew, and also ----

And also, as I was just finishing up this lovely little rant, a cousin calls to tell me that my great aunt - who I was not close to and really only knew through special occasions and the fact that she was our family kleptomaniac ("Is Irene coming? Make sure the Waterford crystal is not on the sidebar!) has passed away and I will be required to attend yet another funeral early next week.

It's like I said a few weeks ago: what I wake up worrying about is never the stuff I wind up worrying about at the end of the day, so why do I even bother?

2008 has been a sucky, sucky year, and if 2009 isn't better I might have to punch it in the face.

Tuesday, December 09, 2008

First present

First present: wrapped, bubble wrapped, boxed and addressed (the actual mailing is not my job, really). Only about a zillion to go.

Monday, December 08, 2008

Well, if you put it that way.... .

"and he shall be a son, and you shall name him Jesus..."

"NO, Auntie NTE: Issa girl!"

"What, honey?"

"Da baby. That mama's baby: is gonna be a girl."

"um.. no, honey, that's the baby Jesus, remember? Yeah, and baby Jesus is a boy."

"He can be a girl, too. Anybody can be a girl."

Ah, feminism: starting early and interestingly, wouldn't you say?

(This is about 3 hours after we had a discussion about waiting for the "man who is coming to repair the dryer" and I had added that it could be a woman who might come, so it's nice to know that she's paying attention. Of course, the dryer repairMAN screwed that all up, what with his being male and all, but it's the thought that counts).

Sunday, December 07, 2008

I'm downloading I-tunes

because, ugh, I'm trying to upload some Christmas music to my mum's I-pod, and I'm too lazy to figure out the Media Player apps that would make it work that way. So, I-tunes it is. Problem #A is that I have literally 7 GB of space left on my hard drive. As you can imagine that means it runs vvveeeryyy slow. Problem Letter2 is that 6 hours from now when the stupid thing is finally installed, I will have to figure out how to use I-tunes (which is supposedly very user friendly).

We shall see.

Nothing, after all, is idiot-proof.

Saturday, December 06, 2008

Did you ever watch True Life?

Yeah, I know: it's on MTV, which, ordinarily keeps it off my radar screen, but it's been on all day today (and NOTHING else has... even my poor Tivo is out of options for me: grr), and I caught a few episodes.

Let me just say, if these lives are true, then I'm afraid for the world.

It's even scarier than The Hills (which I have never seen, except for the clips The Soup shows of it, but just from them it's one of the saddest things ever), because these people are living their lives this way. I just want to yell at them through the tv..."If he says he wants you and his pregnant girlfriend, then the correct response is not 'I'll think about it', but rather something that involves bodily orifices and sharp pointy objects!"

But I know they wouldn't listen - people can convince themselves of some crazy shit.

Friday, December 05, 2008

In case you are not lucky enough

to have a 2 1/2 year old in your life, let me explain what it is like.

It is like having a tiny, constant narrator to your life/day. It doesn't matter what you are doing, it will need to be said:

"You are eating breakfast?"
"You will take your medicine?"
"You gonna go potty?" (and, of course, "I come in wit chu.")
"You come play wit me now?"
"We play Care Bears. You be Grumpy."
"I'm playing Playdoh!"

There's questions, statements, exclamations, and a million different attitudes and variations, but no matter what you are doing, it will need to be said.

Many, many times.

If you have just said "I'm going to get the cars," then she will feel compelled to repeat that statement in the form of a question: "You goina get da cars?"

If you ask a question, "What are we going to do with this mess?" It will need to be repeated before it can be answered: "Whats we goin to do wit dis mess? We has to clean it up, da mess we made."

There will be orders: "You don't look at me!" and inquiries "Whats dat? Whatz dis? Where's she goin? Why she's doin that?" and chit chat aplenty, and it's all developmentally normal, and wonderful for all sorts of excellent reasons (vocabulary building, skill building, curiosity factor as an element of learning and growth, blah de blah about educational philosophy and all that here), but sometimes? You'd just like to do some ordinary something (let's say... going to the bathroom), without all of the constant chatter.

Who wants to watch the director's commentary before they've had a chance to actually enjoy the movie? Who needs someone to point out to an entire store full of people that, yes, you did actually just trip over absolutely nothing and almost knock down a display?

Most days, the "yiddle" one's loquaciousness is charming, a part of her that I wouldn't change for anything. Today? I just wanted to pee in peace.

Thursday, December 04, 2008

Indian Givers!

Yesterday we went to Costco to escape a smell (the theme of my week could best be summed up in the musical I am currently writing: The World Smells - and It Hates Me), and they had The Tale of Beedle Bard by J.K. Rowling, sitting amongst their stacks of books. I was pretty happy, since I was going to pick it up for SisterK for Christmas, and it was a couple of bucks cheaper than Amazon. So I scooped one up and then entertained Lil Girl while Mum stood in line (it was a short line, but Lil Girl had reached the end of her patience and Pull Up by then). When she finally gets through, they told her that she couldn't buy it.

Turns out they were not supposed to put it out until today, and would get fined $10,000 if they sold it to us that extra day early.

I have to say that I only sort of wanted it until they told us we couldn't have it, and then I really, really wanted it. I also might have muttered something under my breath about how they would have to pay the $10,000 not me, and how maybe I didn't think that looked like such a bad deal to me. But I just let it go. But for those 10 seconds there, I was like "MINE!"

(Also: I don't like the term Indian Givers - unless it applies to the people who gave things to the Indians, and it doesn't - but I couldn't think of what else to call it... any suggestions?)

Wednesday, December 03, 2008

A little book love <3

I never knew that gifting books was soControversial. There seem to be a lot of people who fall into the "it's too personal a choice" category and would rather give/get gift cards. I am not one of those people.

I do always get the "But you read so much - and so fast - we don't know if you've already read it" type complaints from my family about buying me books. It's just that... I don't care: Even if I've already read it, that just means you know me really well, because you picked something that I picked for myself. And with Paperback Swap, no book goes to waste... if it's a double, I trade it for something I haven't read yet. So I think they worry needlessly. Because some of my all-time best presents were books: It was Nana who introduced me to Laura Ingalls Wilder and all the adventures in the big woods; one of my aunts that showed me the joys of Ramona Quimby, Age 8; and Grandmother who introduced me to the fabulous queen of romance, Nora Roberts; a friend who suggested I try Julia Quinn's Bridgertons.

But I can understand why some people would choose to shy away from giving books as gifts: Reading is intensly intimate.

I, however constantly find myself thinking of the people in my life as I am reading a book... Sister J is going to love Twilight, I thought as I was reading it, AND SHE SOO DOES: she now claims to be "obsessed to a scary point" with the characters and read more than 2000 pages in less than a week; Because it was the best book on writing I'd ever read, I gave 15 year old Sister K Escaping Out Into The Open for Christmas one year, and she was as enthralled as I was and - like me - she continues to look to it for inspiration.
I tell people that the reason Olivia is so popular is because way back when it first came out, I bought it for Best Friend/College Roommate for Christmas and the other girls in my dorm (a dorm full of education majors, mostly) borrowed it all the next semester & eventually bought their own copies because the kids in their classes loved it so much. I give grown up books to children (appropriate grown up books, watch your dirty minds) because when I was 11 my mother lent me her copy of It and it changed the way I looked at the world and I give children's books to adults because I want them to look at the world differently too.

The point is not what YOU like, exactly, but about what you think THEY'D like. You have to be considerate of their likes/dislikes.

For example, NEVER get anything that's preachy (if you're religious and they're not steer clear of the Christian based romances; if you're a liberal and they're a conservative staying away from I am America & So Can You is probably a good idea), but initiating people into something new is not completely out of line (like graphic novels? Try to find one that works for your recipient's likes, something new but not frightening so).

I don't understand people who don't like reading... it seems impossible to me. Usually, I tell them they just haven't met the right book yet, like a yenta who's sure she's got the right man up her sleeve, just waiting to be introduced.

Sometimes it doesn't work out (like the time I absolutely loved The Secret History of the Pink Carnation and passed it on to Mum, who thought it was just 'eh' or the time Grandmother sent over a book about a deaf priest and the miracles he's performing which.. not so much for me), but that's ok.

You just keep trying till you get the right match.

A perfect book: there's really nothing like it.

Which is all just really to say, please pop on over to Buy Books For the Holidays to check out my recommendations for Books to Buy for Romance Readers this holiday season

Tuesday, December 02, 2008

Today I gave myself a time out

After a week filled with people coming and going, food that needed baking, children that needed minding (and reminding), nights that needed filling (as sleep was largely absent) and a whole lot of stuff that still needs to get done - and with an upcoming week that looks scheduled to the extreme as well, I came home from my grandmother's house today to find that Dad - who is on vacation this week and can't seem to stay on my good side when it comes to smells - had washed the kitchen floor (with barcolene), put up a new plastic (and odoriferous) shower curtain, and washed all the windows (with Windex!) That's three horrific smells all bundled together, and I nearly threw up - and then I nearly threw a fit.

Struggling to breathe - and not to cry - I decided I had had enough, and went in my room and shut the door. It was a little after 3, which is twilight around here this time of year, so I put some Christmas music on shuffle, the heating pads on high, and my head on the pillow.

I just laid here, in the dark: rotating every few minutes to relieve pressure on the sorest points and get heat onto a few different points, hitting the next key on my remote, during the volume up and down as I willed it. And I thought. I thought about all the things that have gone wrong since this time last year, and all the things that have gone right. I thought about how I don't know where we'll all be next month, let alone next Christmas. I thought about all of the issues that need to be dealt with within my family, and how I just don't want to be the person who has to deal with them any more. I thought about all the excuses, all the explanations; all the avoidances & all the annoyances. I thought about all the things we'd hoped for this year, and all the ways we've failed: all the ways I wanted my life to be different at this point, and all the ways I haven't managed to change it.

Basically, I laid around in a lot of pain, feeling sorry for myself, and figuring I deserved it.

And I did. I deserve to feel badly for all the things that haven't gone right - to mourn all of the losses we've accumulated. It's not out of line to have myself a little pity party when I've just come back from writing thank you notes to all the people who showed up at my uncle's funeral, to a house that's uninhabitable to me and people who get pissed off because they think they are helping when they are so obviously doing the opposite.

It's been a bad year, in a lot of ways. And the bad times? They don't look like they're especially ready to let up. So, ok: lay in the dark and feel sad for a little bit. Roll over and over with tears running down the sides of your face as you listen to songs that are supposed to be cheery. That's OK, that's alright, you're only human.

But then you have to look at all you've got, too: you have to get to the point where you're ready to say "Yeah, that really sucked. And it'll probably still suck tomorrow, too, but you can do it anyways."

And that's OK too. Because I know I can do it. Because as much as the people I love drive me crazy (and They Do. The End.), we're in this together. Because as much as it sucks that I feel this bad, I've felt worse. Because there is, at this very moment, some person in a lab coat looking at my blood and thinking 'WTF?', and a few years ago they weren't even doing that. Because as much as it's true that I'm nowhere near where I wanted to be at this point in my life, I've still got the chance, I've still got time & hope & opportunities.

So I'm going to remember to give myself some time outs in the next few weeks, as the always overwhelming holiday season interacts with grief and chaos to produce an even more stressful time for all of us. And if laying in the dark for a while with my brain shut off *as much as is possible for me* is what it takes to get through it, then that's what I'm going to do.

Monday, December 01, 2008

Some days the merits of hermit-dom seem really, really great.

The cheese in this video on sort-of makes me reconsider.

Sort of.

Sunday, November 30, 2008

It's the last day of NaBloPoMo,

and the temptation not to post is almost overwhelming. Nothing like sabotaging yourself at the very last minute, right? I'm getting some rest and cleaning out the TiVo (and probably the pumpkin pie pan) on this drizzly, dank Sunday here in Massachusetts. I had the house to myself for a part of the day, and that was a treat. A nice, quiet treat. I also bought some Christmas presents online, wrote a post (that I haven't published yet) for the Books for the Holidays blog, and backed up my computer to my hard drive. Now for this week's episode of House (What the heck was I doing on Tuesday this week?)

NaBloPoMo: completed.

:big sigh:

Saturday, November 29, 2008

A quiz to pass the time.

You Are Chess

You are brilliant and shrewd. You can often predict what people will do in the future.

You thrive in complex situations. You deal with contradictions well.

You can have many streams of though going on at your mind at once. You keep track of things well.

You are very patient. You have lots of endurance, even when your energy dwindles

Alright, I'll take that... I like the description, even though I never really liked chess. I like Wizard's Chess, though: much more exciting.

Friday, November 28, 2008

You couldn't get me into a brick and mortar store today

for all the money in the world.

But I'm willing to let you try.

Hope you are having a calm, relaxing post-Thanksgiving day. We're doing leftovers and game night tonight, and Youngest Nephew is going to sleep over. I am trying to take it easy, as I am sore as hell today. I fell last night, banged my back up a bit. I think it had to do with coming off of the medicine that's been making me dizzy & just being plain worn out.

I'm really bad at the whole walking-away-before-you're-completely-exhausted aspect of things, even 14 years into this whole chronic illness thing. Special occasions are especially difficult: walking away when things are just getting rolling, when everybody just starts laughing, when the game boards come out - yeah, that's really tough for me. But I know there are a lot of things between ALL IN and FALLING DOWN, and I just have to pay more attention to the other options; kick people out of my big chair, take the medicine before things get really bad... I know all of this, but I need to do it.

Sometimes I feel like a dope, wishing things could be different instead of doing things differently.

Thursday, November 27, 2008


they Rick Rolled the Macy's Thanksgiving Day parade. How awesome is that?

Of course: infinitely more awesome if someone in your house knows what the hell you are talking about, but that's what I have you for, right?

Happy Turkey Day, Friends.

Wednesday, November 26, 2008

Pie baking day

AKA Thanksgiving Eve.

It's been a hard year here in the world of NTE, and I'm feeling it quite a bit as the holidays get closer and closer. But, that doesn't mean that I'm not aware that there are many things that I have to be thankful for. Tonight, I'm going to remember that I have a lot of people in my life that are vital & important. That they make the hard times bearable, the normal times valuable, and the special times extraordinary.

For those of you who take the time to read this please know that I'm grateful to have you, too.

Happy Thanksgiving, all.

Tuesday, November 25, 2008

My idea of fancy lately

Lil Girl put this on my finger first thing this morning, and then refused to let me take it off all day long. It's probably a sign of how sad my life is that it sort of made me feel weird. I don't even own rings that fit anymore. (And wouldn't wear them if I did), but having something on my finger just made me move my hand differently. Cuz I'm special like that.

Monday, November 24, 2008

Hello Peoples

... would you like to guess what I am? If you guessed 'sick' (and if you've been here more than once, why wouldn't you guess that?), then you are correct. It's the tonsils again. I do believe I would rip them out of my own throat at this point. It's feeling like a reasonable option today, where one tonsil - who apparently felt lonely - decided to triple in size in order to meet the other one on his side of my throat. Again. Me and my tonsils, we are fighting.

In other news, the new med continues to make me dizzy (but definitely less than the first day), and I have to call Zack tomorrow because there has been no improvement in pain and he only gave me a week's worth of this stuff, so I don't know what I'm supposed to do next: keep taking it and wait or just knock it off? I think you know what my vote is.


Yesterday I went to the mall. Because I AM AN IDIOT thought it would be good to spend time with my sisters. Unfortunately, the sister whose plan it was didn't actually have a plan. So there was a lot of random wandering of the mall, and texting tag ("In Hallmark: Meet at Sears?"), and although there were some nice/funny moments (like when SisterCh tried to shove me in the car that I was falling out of and said "But your BUTT can't hurt!" really loudly; or how SisterK put the wheelchair in the backseat and left herself no room for, you know, sitting; or how SisterJ was totally with me on the whole "this store is loud and annoying and we're just going to walk right back out" deal) I shouldn't have gone because, honestly, I was already getting pretty sick. And I knew it. But I felt bad about having to cancel so often, so I went. And... it was too long of a day for me and now I am paying for it. But, oh well, because still: I made the decision, I left the house, I got to hang with 3/5 sisters... we'll call it even.


I meant to have a picture up for MBSM today, but that just ain't happening. I'm going to have to try for tomorrow, at which point, it will just be a random picture, but you're not going to complain, I don't think.

So... that's my update for today, I'll try to check out what you are up to soon!

Sunday, November 23, 2008

If by 'lively' you mean 'batshit crazy and homicidal', then you're right on target.

Thanksgiving Horoscope for Gemini

You're the sign most likely to bring up interesting and controversial topics at Thanksgiving dinner.

Your signature dish: Sweet potatoes with marshmallows

Your signature dessert: Pumpkin cheesecake

This holiday: Play bartender. You're family is much more lively with a few drinks in them.

Friday, November 21, 2008

See how I almost forgot about you?

But I didn't.

And it wasn't so much a case of forgetting as it was a case of thinking I'd already written this, and then realizing I had written an e-mail to my friend instead. Since my blog is (mostly) anonymous, my IRL friends don't check up on me here, so I have to like... actually talk to them or send them e-mails or something in order to catch up with them. I know! It's prehistoric. Anyways, let me just recap what I was telling Best Friend/College Roommate:

It is very, very cold here ("Mid January temperatures" the weathermen proclaim gleefully as I wonder at their sanity. And also at the accuracy of our calendar - perhaps it is, in fact, Mid-January, but we just didn't notice. With the type of life I've been living lately, I would not be at all surprised.) Also, I don't really know why I told her it was cold here, as she lives 40 minutes away. Northern minutes, so, if anything, it's probably a few degrees colder than it is here. But I told her anyways.

I am on day two of a new medicine that makes me very woozy. So woozy that I am now appalled that I considered myself dizzy before this. But the doctor says that generally only lasts for a week or so. If you - or he - has a free week in which to feel like you are on a rocket ship even though you are not moving any part of your body - and especially not your head - please feel free to volunteer. I may not have much of a life, particularly, but the one I do have requires that I am somewhat able to converse with people without feeling like my head is filled with helium and is rising to the ceiling and I am barely holding on to the attached string.

The best thing about my new medication is that it makes No. Sense. Whatsoever. Not that this is new to me: It makes no sense for me to be on half the things I am on, but I take them anyways on the off chance that they might help me. But this new drug? Is stretching it even for me - It is a blood pressure medication for people with high blood pressure. To lower their blood pressure. I? Have very low blood pressure (and/or a very low pulse: it varies). I am taking this medication - a very, very, very low dose - because it has been shown to help blah de blah blood vessels, and they think that might help the blood flow around some of my more painful areas and... honestly? Zach lost me pretty quickly with this one. I thought I understood it yesterday... Wednesday, I mean, at the appt., but the woozy part is not helping me to remember it clearly. All I know is this - I am taking a medication that's originally designed to help lower people's blood pressures, and when I started taking it yesterday, mine immediately went up. And then down. And did the same again today. I do not understand it, and I do not like it. And I may give it the week, but if it doesn't start changing something - for the good - soon, I don't know how much longer I'm willing to take it.

The people who came to see the house on Wednesday are very interested. Extremely interested. This is good and bad - we, of course, have no other place to live, so should they go from 'extremely interested' to 'actively buying' in the near future, we will go from 'temporarily stuck in a bad living situation' to 'having no living situation', which I'm not sure is an improvement. But we'll just have to wait and see there: Mum continues to house hunt, I'm considering all my options. We'll see.

Other than that - Family members currently driving me insane = (I was totally going to count them up and everything, but what's the point) All; Craft projects started and as yet incomplete = 9; Local radio stations currently playing "all Christmas/all the time" and thereby making me want to boycott them for life = 2 (Dear Oldies 103.3 & WROR 105.7 - Midnight on Halloween is not the opening bell for the Christmas season - you are skipping over Thanksgiving, at the very least. Stop it. Seriously); Number of mice still taunting me somewhere in my room late at night = at least 1; Pies to bake next week = at least 3 (must hunt up new recipe for blueberry pie... do not like the way last years leaked); E-mails that still need to be written (off the top of my head) = 4; things that could keep this list going = infinite.

So there, that's my update. Anybody out there?

Thursday, November 20, 2008


Yeah today was a lot worse than yesterday: Post Doc PAIN & fatigue, a new med that's making me dizzy and faint-y, Lil Girl in an... emotional mood, and a sister demanding that I read 757 pages before she left for the midnight showing of Twilight. Other than that, quiet and peaceful.

Sure, quiet and peaceful.

I do not like this new medicine, but I'm remembering that my first week on Lyrica was sucky and a half, but it did wind up helping a tiny bit. I'll take another tiny bit and keep on building on it until I feel halfway human. Since today is not that day, this is the best post I'm capable of writing right now.

Wednesday, November 19, 2008

House Showing

and an appointment with Zack have made today a "must rest now" day. I'll check back tomorrow, and tell you all about the lady who saw our house today.

Tuesday, November 18, 2008

I can't get anything done today

although... that's not actually true. I have done some things, just not the things I should've done. This is not exactly a surprise, as generally what I plan to do on any given day doesn't really wind up being what I do on those particular days. Usually through no fault of my own.

Today was supposed to be a Lil Girl day, but Lil Girl's mother called this morning and said she wasn't coming. She's fine; STB-Sister-in-law just would like to change our days of the week.

Umm... what?

It's not so much that we can't change our days, it's how about asking? How about having a conversation about it? Since, you know, it's something that we're doing that's helpful to you (and extremely joyful and great for us, but still demanding), how about having the courtesy of letting us know before a half an hour before you're supposed to show up? And... just, I don't know: I may just be making more of it than is necessary, but it really feels pretty shitty to be taken for granted.

So, right now, I'm supposed to be writing an e-mail to STB-Sister-in-law, to have our discussion about the changes: the why, the details, the how it can't start tomorrow because I've got an appointment with Zach, etc., and instead I'm ranting a little bit here, because I'm afraid if I write the e-mail right now it'll say something like "I've been doing my very best to help you raise your kids for the past 8 years, and it's brought me more joy than I've ever known. It's also been extremely difficult at times - especially health wise - and, on a lot of occasions, I've done more than I should have, more than was smart, or healthy, for me, and I've done it (sometimes even against doctors' advice) because I love and care about them, and you, and my brother and because it's important to me to be the best aunt possible. I'm not looking for special thanks, or big cheers; but I don't really think it's out of line to expect just the tiniest bit of consideration in return."

Which I don't really want to say, because it sounds horrible. And it says more than it should (I don't really care if the doctors tell me I should do less: it's not as if I'm going to listen to them anyways... they don't know anything), and it feels more mean spirited just reading it back to myself than it did just writing it. So, yes, it blows the whole thing out of proportion, and yes, I'm glad I could rant a little here, so I didn't just blurt it out to her.

But seriously, people? Just because I want to help doesn't mean you can walk all over me. Assuming I'll just fall in line isn't really fair to me (or Mum, whose POV I totally didn't even write about here, but also just pisses me off even more so now I'll have to calm down again), and it would be nice if I didn't have to point that out to you.

End Rant.

Deep Breath.


Monday, November 17, 2008

A pretty good line up.

Monday is a good night for television (and an even better night with TiVo, who, in case I haven't mentioned it is either my very good friend or my total nemesis: we're still deciding), so I'm putting down Eclipse in order to watch a few of my favorite shows.

Big Bang Theory is both hilarious and sadly true: if you are a geek, or have geeks in your life, you know that people actually do have conversations that revolve around Shroedinger's cat or Hobbits. You'd be surprised how often George Lucas or William Shatner could come up in a conversation.

How I Met Your Mother has some of the best characters ever. Specifically: Barney - It's gonna be legend-... wait for it... and I hope you're not lactose intolerant because the second half of that word is DAIRY! - Stinson.

Chuck is on at the same time, but thanks to TV I can watch it later. It's a well written show, and has the added benefit of having Jayne, with a gun (although it's not Vera).

Heroes is not living up to its past seasons or potential, IMO, and if it doesn't improve, I'll probably move it off my Season Pass list.

I won't mention Two and a Half Men, which I think is unbelievably dumb and can't believe is still on; Worst Week which is just lame and will probably not make it through to the end of the season; or CSI: Miami which is a show about sunglasses. I know they're on, but I avoid them. At 10, I generally watch Boston Legal which vacillates between being fully annoying and fully amusing.

And then Jon Stewart & Steve Colbert team up to keep me happy & sane. They certainly have their work cut out for them.

Hope your week is going OK, everybody.

Sunday, November 16, 2008

Lessons in aperature

Angie is untangling photography for me a little bit... I'm still not getting everysinglething, but I'm trying to get one thing at a time... Since I"m pretty comfortable with ISO and shutter speeds, depth of field and Aperture are first: the converse mathematics are just so... convoluted that I'm having trouble getting it down. I just need to keep practicing, which means I need to find things to take pictures of, and I've been a little uninspired/totally freaking insane & busy lately. (take your pick)

But I'm going to keep practicing anyways. I will conquer F Stops. I will.

Saturday, November 15, 2008

Technology is depriving kids of ... horrible smells?

When I was younger, we didn't get an allowance. There were 5 kids, and if we needed money for something, we'd ask and take our chances on the answer. The money I had was mostly presents - Christmas or my birthday, a dollar from a visiting great uncle or whatever Nana passed out at report card time, that kind of thing - and I tended to be a saver, so it mostly all went - clink and cram - into a piggy bank: first a Funshine Bear, and later on a purple Opus. But there was one way that my brother and I could actually earn money, and that was by taking the cans and bottles back to the recycling center.

Back in the late 80's early 90's, recycling was a pretty new idea. At the very least, it was new to me, and newly popular in our area. It hadn't yet blown up to the degree that it has now though: I had never seen a recycling bin, and probably wouldn't for another 5 years or so, and there was only one bottle and can redemption center in our town. Luckily it was pretty close to our house, down one big hill on a street parallel to ours, about 3 blocks over. (Everything in our city is either up or down at least one big hill. Our city was once called the "Rome of Massachusetts" because it was founded on 7 hills. Inane trivia, meet the internets. Internets; inane trivia.)

At the time, we were mostly 2-liter bottle drinkers (soda in cans was beyond our price range then), so we'd lug humongous garbage bags filled with empty plastic bottles and smaller bags with whatever beer or wine cooler leftovers my parents had from our house down to the center. I don't know who did the job in the winter time - probably my mom, while we were at school - but all spring, summer and fall, every couple of weeks my brother and I would trudge down the hill with at least 5 of these gigantic bags, praying that one wouldn't bust open and lose its cargo or (as the years went on) that none of our friends would be outside to see us.

You couldn't do the job yourself: why we never thought to make more frequent trips so there'd be less to exchange, I don't know, but by the time we got around to it, it was always a two man job. The bags were light, but unwieldy: You couldn't just drag it along behind you (ahem, some of us know this from experience), because it would snag on rocks and cracks in the sidewalk and eventually spill open and cause a commotion... the 15 extra minutes it added to your trip as you chased after every last rolling bottle was never worth it. Especially with your big brother standing there impatiently, or, even worse, sitting on the curbside laughing as you "play in traffic:" I might have been thankful that the walk was downhill with all the bottles safely ensconced inside a bag, but once they were let loose, I could only curse our path. I would spend most of the walk trying to negotiate with the bags, the sign poles, other pedestrians and my feet - the only time I was graceful as a child was when I was dancing.(It's the reason they started me in dancing in the first place, but unfortunately, that ease of movement just didn't carry over into other aspects of my life.)

I know we did it for months every year, so I'm sure it must have been cooler some times more than others, but I always remember it as being hot. And humid. So that, by the time we'd finally get to the center, my face would be that nice red it adopted whenever I was outside &/or exerting myself, and people passing by most likely thought that I was lugging bricks instead of empty plastic bottles. The thing I remember most of all though, from all of those trips, is the smell.

The smell of old beer, and tonic gone past sweet to cloying.
Of heaps of plastic sitting, baking.
The redemption center was just a large warehouse, and it smelled like every basement I've ever been in, only ten times worse.
Just moldy and yeasty and dank.

It was always dark, even in the middle of the day with the cargo door wide open. The walls were made of tin, so that when one of the soda bottles would roll off of its pile, it would 'ping!' before hitting the ground. And you could hear all the bottles clanking together as workers shifted them off the tables and into bins.

When we went in they'd have cafeteria tables set up for you to put your stuff on: it was up to you to take each bottle out, line them up in rows and wait for the guy to come around and count them. This was my major contribution, since Only/Older Brother usually carried about 3 times as many bags as I did.

I'd take each tacky bottle out of the bag, and line them up in rows of 5, usually getting about 50 on a table. It wasn't required that these rows be need, but I mostly couldn't help it - even though I wanted to get out as quickly as possible, if I was putting them in a line, they needed to be in a straight one. My brother would roll his eyes if he saw me fixing the ones that were already on the table, so I had to try (discreetly) and get it right the first time, which made it seem an onerous task.

By the time I was finished, my hands would be sweaty and sticky, and I almost always wound up pulling at least one bottle with that last little drop in it out of the bag upside down and getting watered-down soda on some part of my body. My shoes would be gummed to the cement floor, and I'd wait for the money man, trying to edge closer to the open door to grab some fresh air.

The guy who ran the place would eventually heft himself out of his folding lawn chair and make his way over to our table, lit cigar in his mouth. Or there'd be a kid - maybe 16, 17 - who'd wander over from the piles and count our load out loud. Either way, we were never short changed, and the money would go from his sticky hand to my sticky hand - insane totals like $4.35 or $11.80 - and I would carefully split the take in two and give my brother his half (extra nickel going to the person who'd guessed closest to our actual take). Then I could escape outside again, into the bright sunlight and away from that smell. My brother would head off for who knows where and I'd go back home to shower the stickiness and stink away.

Which is all to say that today I waited in the car while my parents ran into the liquor store. We were parked close to the door, and when it opened, that same smell came out and I thought "Who'd drink anything that smells as bad before you drink it as it does rotting away afterwards?" And also? I saw these machines that just eat up your old bottles and count them up for you, which I knew they had, because Mum does them every couple of weeks now, but still. Whatever, technology.

(please pardon the glare, since I was in the car.)

Friday, November 14, 2008


I'm just going to direct you Over Here: I don't know this person, but I wandered onto this flickr stream while trying to find some pictures to cheer up Youngest Nephew (who was feeling sick earlier this week), and I find myself giggling over them still today. So, if I'm still thinking about them a few days later, maybe you'll find one that tickles your funny bone, too. (They're Star Wars related, btw. In case you needed more evidence that I am a geek.)

Thursday, November 13, 2008

The Office is on tonight

And that is happy making. I'm going to keep that in mind as I work through my day. (Which includes Lil Girl, a sinus headache and trying to clean up the house for another showing tomorrow.)

Simple things, people, simple things.

Wednesday, November 12, 2008

Idea for the day

Some wisdom for your Wednesday...

"Buy Books for the Holidays is a collaborative blog that will showcase books, serve as a central point where we can all report our progress, give bloggers a chance to showcase reviews by genre, help people find the perfect book for that difficult or challenging person on your list, announce internet or bookstore specials, and raise awareness of literacy charities to promote a culture of reading in the future."

I'm totally on board...

and you should be too.

Monday, November 10, 2008

Monday has not been my day

I missed my best shot monday, but maybe tomorrow I'll get one up... we did take a couple of family shots this weekend (which was both odd and comforting), and if I can get myself motivated to get them out of the camera, that would be good. Motivation and I? Today? Not even acquainted.

So I'll catch you tomorrow, and I'm glad I have this goal of NaBloPoMo, giving me something OTHER to think about.

Be Back tomorrow!

Sunday, November 09, 2008

Because TV always knows what to say, even when I don't

Jason Morgan: The first time I ever saw grief was when Sonny's wife Lily died. It made me understand that bad things happen fast but you live through them slow.

It's from an episode of General Hospital, which, I know: not exactly the bastion of knowledge that you expected. But I still remember hearing the character say this... still know how true it is. I'm sure it's been said a million times, a million different ways, but when I make it through the weeks like this past one, it's the line that goes through my head... you live through them slow.

Thank you for your kind thoughts and prayers for my family. They are much appreciated.

Saturday, November 08, 2008

My month is starting off sadly, as my uncle with Down's Syndrome, who (I explained somewhere but can't find the post for) has been quite sick, was removed from life support last Friday, because his organs had been shutting down. He's been largely unconscious for the past 2 months, so it's not a tremendous surprise, but it is a tremendous loss. I went to see him on Friday, and watching my eldest uncle hold his hand and put his head close to Uncle Mark's in the way they always have, well it was tough. And this is my Grandmother's third child to die in the past 9 years: None of them was over 55 when they died; my father was 39, my uncle was 51, and Uncle Mark is 45. He's lived a lot longer than they told her he would when he was born - his life expectancy then was 3, then 8, then 18 - but it's never enough. It's never long enough.

I think his life has been happier than not - he spent most of it surrounded by & cared for by his family - he worked at a local center for adults with disabilities during the day, and spent his evenings in his chair rocking and watching television with the rest of us. His vocabulary was rough, and grew more and more limited in the past few years, as he was diagnosed with early onset Alzheimer's and had seizures that made things even more difficult, but he knew most of our names (there were 9 kids, 16 grandkids, and 5 great-grandkids, so keeping track is not easy for anybody), the name of what show was supposed to come on next:"Jeopardy!" or "Judge Judy", most likely; and he gave crushing, killer hugs.

In the past few years, he'd been getting sicker - developed mini-seizures, and ultimately, this year, major seizures - and had to be moved into a residential program, with most of his friends from work and a lot of wonderful caregivers. (My 91 year old grandmother and 67 year old uncle just couldn't manage to do things like give him showers once the threat of the seizures became constant.) When I visited, 3 of the caregivers came by to see him & one was in tears in the hallway when we left... he was, they assure me a "well loved man."

Judging by the friends, caretakers, and administrative people who showed up for the two night wake and yesterday's funeral, I have no doubt... A teacher he had over 30 years ago came. All of the clients that worked with him. A nurse from the hospital. One of his friends, a woman in her 30's with Down's, cried through the entire funeral mass, all the while saying "I'm not crying for Mark. He's my best friend" and "I miss him." Another client blew a kiss at his casket as he walked by. I was holding up ok (ish), but that slayed me.

Of course, then the fact that the priest brought up all of the family members who would be greeting Uncle Mark in heaven - my favorite uncle, my father, my grandfather - and reminded me that I'd met him before: "at one of these - your dad's?" didn't help. And watching my grandmother deal with this is one of those things I just don't have the words to explain today.

So, I'm going to rest, and know that he was well loved, and, for today, I'm going to just let myself believe what my Grandmother believes - He's in a happier, better, pain-free place.

Friday, November 07, 2008

All I have to say today

is that I'd really like to stop going to funerals.

I'm ok (ish), so please don't worry, but I'm just not up to the long explanatory post today. I have to go to yet another family funeral this morning, and after two long nights of a wake, I'm already in enough pain to want to just up my pain pills until they actually Freaking Work. My uncle died on Sunday, and there have been some really tough moments in the past few days. But I'm getting through, holding on, being-haved, holding hands and hoping for the best.

I'll be back tomorrow, and I'll try to make more sense then. But for now, I just really don't want to have to go to any more funerals.

Thursday, November 06, 2008

It's Thursday, so a poem...

Because today I'm out amidst the "real and acid rain," I'm leaving you with a poem to keep you company....

In Bed with a Book
Mona Van Duyn

In police procedurals they are dying all over town,
the life ripped out of them, by gun, bumper, knife,
hammer, dope, etcetera, and no clues at all.
All through the book the calls come in: body found
in bed, car, street, lake, park, garage, library,
and someone goes out to look and write it down.
Death begins life’s whole routine to-do
in these stories of our fellow citizens.

Nobody saw it happen, or everyone saw,
but can’t remember the car. What difference does it make
when the child will never fall in love, the girl will never
have a child, the man will never see a grandchild, the old maid
will never have another cup of hot cocoa at bedtime?
Like life, the dead are dead, their consciousness,
as dear to them as mine to me, snuffed out.
What has mind to do with this, when the earth is bereaved?

I lie, with my dear ones, holding a fictive umbrella,
While around us falls the real and acid rain.
The handle grows heavier and heavier in my hand.
Unlike life, tomorrow night under the bedlamp
by a quick link of thought someone will find out why,
and the policemen and their wives and I will feel better.
But all that’s toward the end of the book. Meantime, tonight,
without a clue I enter sleep’s little rehearsal.

Wednesday, November 05, 2008

Big Sigh of Relief

It was a pretty amazing night, last night. I'd like to sit here and bask in the happiness of actually making a difference, for just a little bit. And yet, I spent most of the night being petrified that someone in the humongous crowd was going to do something desperate, that I would watch a horrible history unfold instead of a triumphant one. That must say something about me, that I couldn't just let go of the fear for one of the most inspiring speeches I have ever heard, but it's where I am... I have had that kind of a history with elections (the whole thinking we've done it and then getting crushed like a bug), and it's been that kind of a year for me personally: the kind where the other shoe just keeps dropping, and landing on me. So, I'm going to cut myself some slack on the whole fear thing.

But it was a wonderful, wonderful thing, and I'm so glad that things have changed enough in this country to let us get to this point.

I've been looking over some of the ballot questions and am distressed to say that other changes in our society aren't occurring as fast as they should be - Arizona, California (maybe), Florida, all passed bans on gay marriage & Arkansas passed a ban on same sex couple adoption. This makes me crazy, and yet I remain hopeful, since today's a day where it is pretty obvious just how far we've come, that we'll get there eventually, that all people will be seen as equal, if we just keep doing the work.

- Oh, and an aside here: When Obama's speech began with a list of groups of people (gay, straight, white, Hispanic, etc) and actually included "disabled and non-disabled", I cried. Because just the acknowledgement that we exist is something that's been missing for a long time... And remind me to write a little bit about voting as a 'disabled' voter and wth it's so freaking complicated -

On the positive side, voters in Colorado refused to amend their constitution to change the definition of a person in such a way as to ban abortion & South Dakota voted against banning abortion all together; Michigan voted for stem cell research and medical marijuana; and my own state of Massachusetts kept its collective head by voting against repealing the income tax (you know, so we can have.. schools and roads and stuff) and decriminalized marijuana in small amounts, calling it the sensible marijuana policy.

So, all hail the sense - common and good - that enabled us to make changes. And let's keep on working for the changes yet to come.

Happy New President, America.

Tuesday, November 04, 2008

Nudge Nudge

Because a lot of people are saying it better than I ever could, I'm going to just post some links today... Let's get out there and make a difference, reader(s)!

Here's 10 Reasons to vote Obama, and I'll add a couple of more:

He's got support from a lot of Republicans who think he's the right guy for this job.

I'm more nervous than ever that he might lose, and I'm not the only one.

This guy's already written his strip for tomorrow, and he'd be embarassed if he was wrong. AND SO WOULD WE.

And if you need still more convincing check out these very funny lists (helpfully rounded up over at Chaos Theory).

Please go vote. Even if you're voting (wrong) for the other guy.

Monday, November 03, 2008


Tomorrow, we vote. I'm not going to tell you who to vote for, although I think you'll be able to figure out where I stand in the next few minutes - I'm just going to remind you that vital to vote, because what you care about matters.

The past 8 years, and the two presidential elections I've been eligible to vote in, my candidate has won my state, but lost the country. 4 years ago, when Bush (II) was reelected, I literally cried, amazed that parts of our country were either so blind or so stupid as to want to continue the policies that I felt were ruining a lot of what is good about this country. I'm still amazed, but now I don't know that they were stupid or naive, just that they've been scared. I've been scared too, and I'm still pretty scared. Scared that tomorrow night won't go the way I think it should, and I will be stuck with another four years of policies that go against what I believe in, another four years of someone who doesn't really know what they are doing. Scared that I'll have yet another president I feel I will someday have to apologize to my children for. I hope that won't be true, but I really thought it wouldn't be true four years ago, so I'll just have to wait and see.

I'm sick of being scared, and while I know that Obama is not the Almighty returned to earth, and that his (please god) presidency will be full of ups and downs and trials galore, I also think that he will at least try. He will make an effort to address all of the injustices that I see everyday. At least, that's what I hope.

And hoping, sometimes, is all we have.

"To be hopeful in bad times is not just foolishly romantic.
It is based on the fact that human history is a history not only of cruelty, but also of compassion, sacrifice, courage, kindness. What we choose to emphasize in this complex history will determine our lives. If we see only the worst, it destroys our capacity to do something. If we remember those times and places — and there are so many — where people have behaved magnificently, this gives us the energy to act, and at least the possibility of sending this spinning top of a world in a different direction. And if we do act, in however small a way, we don’t have to wait for some grand utopian future. The future is an infinite succession of presents, and to live now as we think human beings should live, in defiance of all that is bad around us, is itself a marvelous victory." — Howard Zinn

MBSM: Spooky

I'm pretty sure they'll be a ton of costume pictures today on the My Best Shot Monday rounds, but that's what today's for. Besides, I Love Costumes and we had a sum total of 6(!) trick or treaters.

So here's two of my three loveys, in their costumes:

We had a colonel (on a secret mission, apparently)

Angelina Ballerina (although she had no idea who that was: "I's a mousey. With a Crown!")

And here they are together:

Sunday, November 02, 2008

Things I am doing today instead of writing my post

- Getting my hair cut (Finally! Big huge thanks to SisterJ, who, I'm assured would not make me look ridiculous.)

- Taking a shower, and then having a shower coma, because of all those little hairs

- Watching the rest of my West Wing marathon on Tivo. Tivo loves me, mostly. And I definitely love him.

- Mourning over the fact that we can't have President Josiah Edward (aka Jed) Bartlett, because if Josh, Toby, Sam & CJ were there, I would feel so reassured about the state of the country.

- Wishing Aaron Sorkin would write another TV show. Also, PS ---> I actually liked Studio 60 on the Sunset Strip for all its flaws. And, although I save my Sports Night DVDs for times when I am feeling particularly crappy, I'm considering breaking them out again.

- Wishing I felt like scrapping, as The Clump (of birthdays) is getting underway & I haven't finished the next three people's scrapbook pages yet.

- Telling lies in my list post: It isn't that I haven't finished them, it's that I haven't really started 2 of the next 4. And that I never finished SisterK's, even though I'm giving them to her as is, anyway. There's plenty, and I'm 'saving' the rest of this year's pictures till next year, that's all.

- Cursing the PUS who vacuumed during my shower coma, which was definitely not appreciated.

- Focusing on my frozen, ice cube feet, which will not warm up.

- Editing a thousand, zillion pictures, because that is the next, necessary step towards scrapbooking. Only I'm not editing those pictures. I'm editing the Halloween pictures so I have something to post tomorrow. And also, because I don't want to look at those other pictures ANY MORE.

- Searching for West Wing quotes to pepper this post with. Prepare to sneeze:

Toby: It's not so much that you cheat sir, its how brazenly bad you are it.
Bartlet: Give me an example.
Toby: In Florida, playing mixed doubles with me and C.J., you tried to tell us your partner worked at the American Consulate in Vienna.
Bartlet: She did.
Toby: It was Steffi Graf, sir!
Bartlet: I'll admit the woman bore a striking resemblance to her.
Toby: You crazy lunatic, you think I'm not going to recognize Steffi Graf when she's serving a tennis ball at me?

Mrs. Landingham: How are you, Josh?
Josh: I've been subpoenaed.
Mrs. Landingham: Oh, I'm sorry, dear. Would you like a cookie?

Bartlet: We meant 'stronger' here, right?
Sam: What does it say?
Bartlet: I'm proud to report our country's stranger than it was a year ago?
Sam: That's a typo.
Bartlet: Could go either way.

Josh: I denied it for half an hour, they wouldn't take no for an answer!
Bartlet: You were clear?
Josh: I was crystal clear! They said, "Do you think that, if the President has a plan to fight inflation, it's right that he keep it a secret?" I said, of course not!
Bartlet: Are you telling me that not only did you invent a secret plan to fight inflation, but now you don't support it?

Jeff Breckenridge: You got a dollar?
Josh: Yeah.
Jeff Breckenridge: Take it out. Look at the back. The seal, the pyramid, it's unfinished, with the eye of God looking over it, and the words annuit coeptis - he, God, favors our undertaking. The seal is meant to be unfinished, because this country's meant to be unfinished.
We're meant to keep doing better. We're meant to keep discussing and debating. And, we're meant to read books by great historical scholars and then talk about them...

Bartlet: "We hold these truths to be self-evident," they said, "that all men are created equal." Strange as it may seem, that was the first time in history that anyone had ever bothered to write that down.
Decisions are made by those who show up.

Saturday, November 01, 2008

Hey all!

Be prepared to be amazed as your Bloglines and Google Readers overflow, while at the same time your blog reading time shrinks to a minimum & you wonder how the hell you'll ever catch up. That's right, it's National Blog Posting Month!

I've participated in NaBloPoMo for the past two years, making this my 3rd Annual NaBloPoMo, and I figure if I could manage it last year, while my family was literally falling apart, then I should be able to handle it this year too. (Of course, that means you get treated to all of the wonderful drama that is my life, but you wouldn't still be reading if you didn't enjoy some of it, right?)

This isn't a bang-up first post, but I've got to go clean a bit for the house showing we've got in under an hour, and the piles are mocking me. Although today? I am not leaving during the house showing, even though it is sooo awkward. "Hello. Just ignore me. Please just make your own plans for my childhood home, and I will sit here and be as invisible as possible." But it's been a busy week, and I've got an even busier one coming up this week, so rest I must. They'll just have to deal.

Alright: see you tomorrow! Or sooner, you never know.

Friday, October 24, 2008


National Blog Publishing Month is coming up, fast and sure: I'm going to commit to it, because I know I can do it(2 years running, baby!)... and since I'm hitting publish here, I don't have to waste any more time deciding whether or not I'm participating. I'm in: something (lord knows what) will be published here everyday in the month of November.

Decision made. I'm totally the decider.
I am afraid to sleep. Or, more accurately, I am afraid of the kind of 'sleeping' I've been doing for the past few years. It is a horrible, non-sleeping type of sleep.

It's hard to explain, really, how complicated my sleeping life is. (Some people have complicated social lives, others have complicated sex lives: I have a complicated sleep life. You can probably just shoot me now.)

My sleep life consists of a diabolically complex combination of insomnia and half-sleep, exhaustion and extreme pain. The pain and the exhaustion, pretty easily explained: multiple chronic illnesses, see just about any other post. The other two? Not so much...

First off, there's the horrible, insanely ironic insomnia that comes part and parcel with CFIDS/FM: Having excessive fatigue and an inability to sleep makes perfect sense in some world, just not the one we currently live in. So there will be months upon months were I spend all night looking at the dark, when I hold my breath until those glorious 45 minutes between when the kids next door finally go into the school and the next church bells chime - those 45 minutes seem to be my golden time for sleep, the only real time I can almost guarantee I will be able to close my eyes for a while. The fact that these 45 minutes occur after 8 in the morning does not help to make the nights shorter, I can assure you.

Trying to sleep, dragging myself through the long night listening to calm music, or the sound of the clock ticking, or the absolute quiet that comes from shoving the clock in the closet under a pile of clothes - I've come to really hate that part of my life. I hate the waiting; I hate the games I play on the computer trying to waste the time, the lists I make that I know I'll never get around to. I hate all my pillows, and how they're not soft enough; my bed and how it's not wide enough; my covers and the way I have to keep dragging them onto the bed like an ever errant dress train. I hate how dark it gets, and how it's starting to get dark earlier, as if to say "Night is coming, and you will be alone, again, waiting." I hate when it starts to get light out, and I know I've passed yet another night with only the faintest of brushes with sleep.

Night is really the worst time, because it's just me, and the knowledge that I should be asleep; the want, urge, and compulsion to be asleep; and all the right equipment for sleeping - and yet no sleep.

Even worse than the insomnia, though, is the aforementioned half-sleep. Although it's really more like 1/4 sleep or 3/4 sleep: the so-close-and-yet-so-far sleep. It reminds me of those times that you're exhausted enough to be trying to nap in class, but you can hear the teacher droning on in the background and you're still mostly awake. You're alert enough to know not to turn your backpack into a pillow or let yourself start to snore or drool. You're awake, but in that kind of hazy half-asleep world, and you want to cross over to full sleep, but you know you can't.

It's snooze-button-sleep: It isn't refreshing or relaxing at all. It's full of anxiety and broken dreams. And it leaves me more exhausted than when I started, and certainly not ready to greet a new day.

It's so frustrating to have your head on the pillow, your knees curled up tight, your hip tilted just so and ... nothing happens. While you're waiting, your neck starts hurting more, so you shift and now it's that spot on your back that you can't put pressure on, or the imprint of your sweatpants pocket in your leg, or one side of your body is boiling hot and the other is ice cold.

My sleep is neither restful nor peaceful, and oh how I miss the way it used to be: the way I know it's supposed to be. Just shutting down, tuning out, unplugging, instead of being in this constant half charged, hyperly aware unsleep.

There's a part of me that thinks I've used up all my sleeping: all those early years of illness where I slept 18 -20 hours a day, for months at a time, hoping to actually wake up and feel rested, feel ready. (I'm still waiting, still hoping.) Those periods where I slept at dinner tables, bus stops, dance classes - I used up my allotment of sleep and now there's nothing left for me to use. I don't actually believe this, but during the long nights it is hard to remember that sleep doesn't work that way.

But, if I knew how it worked, than I wouldn't have written this post.

Friday, October 17, 2008


Hey guys: I've got my very first ever Guest Post up today at the lovely Christina's Momology... come on over and check it out, will ya?

Wednesday, October 15, 2008

You think you're ok and then you pour yourself a cup of tea and burst into tears.

This weekend I had my first time alone in the house in, well... forever, really. At least years. Between needing help with stuff and the fact that there's so many of us, alone time hasn't exactly been all that available. (And other people are even more screwed, because I hardly ever leave the house for more than a couple of hours.)

Anyways, I was really, really alone for a substantial amount of time: 2 days, all to myself. I was so looking forward to it... sometimes being 29 and living at home is NOT the adventure it might be advertised as.

Mum & Dad were away overnight, SisterCh went to her boyfriend's for the weekend, there was a PUS or two upstairs, but I refuse to acknowledge their existence, so they don't count. It was just me.

But halfway through the first day on my own, around 3 o'clock or so, I started to get this itchy scratchy feeling, and I just ... couldn't figure it out. I felt ... restless and uncomfortable, and emotional for no reason.

And I didn't really understand why it was I was feeling so weird, at first: I often have time when the house is mostly empty... when Mum & Dad go north for their cigarettes, when everybody is gone to the North End for a feast, or to open houses. So blocks of a couple of hours where it's just me are not unheard of.

I stopped what I was doing, checked for the mail, went out to the kitchen, and made myself a late lunch. I was listening to my radio program, nice and quietly, nothing blasting (because that's the way I like it), fussing with the stupid kettle, because it's hard for me to pick up and pour (at least to pour accurately), and I really wanted a cup of tea.

As I finished making my sandwich and cutting up my sour pickle, I poured the hot water onto the tea bag, the smell of the tea hit me, and :wham: my breath just caught in my throat.

And then I realized what the feeling was, what was so 'off' about my day: No Nana.

A little part of me had been waiting for her to come down looking for her mail, wrapped up tight in her bathrobe, cup of tea in one hand, portable phone in the other, complaining about the cold, or the PUS, or coming over to steal a slice of my pickle.

And I sat there drinking my cup of tea, thinking of Nana (who was all about the tea) tears streaming down my face, as I realized this was the first time I'd been alone in the house, really, truly alone, in a very long time.

And I realized that while I mostly think I'm doing ok, sometimes it just comes out of nowhere - that feeling of "how is this real?", how is she gone? 9 months later, and I still don't believe it all the way... there are still times when I pick up the phone to call and invite her to go shopping with us; times when I hear the fighting start upstairs and my stomach reflexively tightens with fear - will I have to call the cops this time - before I remember she's not there anymore and I don't have to protect her (and they can rip each other to pieces for all I care); times when I automatically turn on her shows before I remember that she's not coming in to watch them and I can pick what I want to watch (and even more times that I watch her shows anyways, because who wants to have to catch up on a new show?); times when I can almost believe that she's at school, or out with her friends, or even still in the hospital.

And I know it's not true, but I'm surprised, still, by how much it can hurt.

Especially because on the day to day, I think I'm doing fine. I think I'm coping with all the crap that's going on, and doing a damn good job of it. But then I'm alone for a little while, and the smell of tea does me in. And I know it takes time, it was just... unexpected.

I don't know that I felt better afterwards, exactly, but I did feel like at least I knew what the problem was, why I was on edge. (I hate feeling wrong and not being able to figure out why.)

In an odd coincidence, I finished writing this post last night, and turned on the Tivo. Then I watched watched this week's episode of True Blood (which, if you don't watch it, is very good, if a bit graphic), and the following scene got me started all over again.

It was a deja vu-ish moment for me, I'll tell you.

Spoiler Alert... plot points discussed below, not vital ones, especially, but if you haven't watched this week's episode, stop reading here.

In this scene, the main character, Sookie (who's name is pronounced suck-y; although I still think it should be sue-key, rhymes with cookie)'s grandmother has just been murdered. This is after the wake and the disastrous funeral, and she's alone in the house, with a pie her grandmother had baked. Her last pie. I'm sure you'll see what I'm talking about.

Sometimes, it's just too real.
(Although I can assure you, I do not cry as gracefully as that.)

Monday, October 13, 2008

We may be overdoing it a bit...

Since I've been lucky enough to be an Auntie, as far back as Oldest Nephew (who just turned 12!), one of my favorite things to do with our kiddos has been introducing them to things I love. Getting to expose them to the joys of reading or poetry; to watch their faces when a science experiment goes off without a hitch; to let them use the expensive stickers and see the pride they have in what they've created - it's just one of the best things in my life.

When it comes to TV & movies, I've been lucky enough to hook Youngest Nephew on Indiana Jones & the Dinosaurs TV show, to scare Oldest Nephew with a great white shark, and to re experience the joys (and cringe at some of the realities, but that's another post) of the Disney universe through the eyes of all three of them.

Lil Girl is only here 2 days a week right now, but she's been slowly shortening the amount of time she'll nap, little by little every other week or so, leaving us with a nice chunk of morning time to do something restful and quiet like watching a movie. The rule is one movie, or one hour of TV, total for the day, which Lil Girl doesn't like at all, as the TV is constantly on at her house, but I can't use it as background noise like they do, because background noise makes me want to claw my ears off.

During the past few weeks, we've been slowly working our way through our Disney catalogue, starting with Ariel because she's got an old Ariel figurine that used to be SisterCh's. We went from Ariel to Cinderella, bounced over to Peter Pan & Aladdin, did a little Monster's Inc. (I forgot how cute Boo is!) & Toy Story; sat through the beginning of 101 Dalmatians 3 times, and, most recently, dug out Beauty and the Beast from its hiding place. We also have a ton of Disney books, so she's read a lot of the stories, even if she hasn't seen them on screen yet.

But, while playing with some more of those old action figures this week, I got a little hint that we may be bombarding her with a few too many story lines.

She had her Aladdin figure in one hand and I asked her what happened if I rubbed on his magic lamp.

Apparently, when you rub Aladdin's lamp, a "Crocodile comes out and eats off your hand, like Captain Hook."

Not exactly the Genie I was hoping for, but thanks for the fair warning, kiddo.

This is My Best Shot Monday post, head on over to Mother May I for a bunch more.