My Nana

I just wanted to thank you all for your supportive comments and wonderful advice: this week has been incredibly difficult, and having you all there in my heart & head has been so helpful.

I've heard people speak poignantly about death and grief: read amazing posts from people who are suffering through unbearable pain, and I've never been more in awe of them than I am now.

Because I can think of nothing to say. No, I can think of too many things to say, and the zooming of my thoughts does not seem to translate into anything I can express.

I want to say how much I miss her: that I hadn't realized exactly how much of my everyday life was wrapped up in hers - from her morning trek down to get the paper to her last pills at night, she lived with us, she was a part of almost my every moment.

I want to say that it is so hard knowing that she won't knock on the door again... that it doesn't seem real. It seems as if I am either the best actress in the world, or the worst, and I am just waiting for her to enter stage right, and until she does, I don't know my lines. Or my cues, or my reason for being on the stage.

I want to say that, even as I am writing this, I know that it could have been so much worse. That this was, in actuality, a pretty easy way for her to go. The last two weeks were hellish for us & for her, but it would've gotten so much worse. And so I'm glad that she didn't have to do that.

I want to say that I am mad at her for hiding how sick she was, for wasting so much of our time together with the stupid PUS, for so smoking up until the day she started her radiation. And that I know how pointless it is to be angry at her.

I want to say that losing her makes me so afraid because I remember again, just how easy it is for people not to be here any more. 10 years ago, I lost my grandfather, my father, and an uncle, one every year for three years, and I kept thinking "I can't go through this again. I'm just not strong enough." 10 years later, and I feel no more capable of saying goodbye than I did then, and I'm terrified, because I know more people that I love will - eventually - be lost. Seeing my grandmother kneel in front of my Nana's casket, and knowing that she was my last living grandparent? I just wanted to hold on to her and never, ever let her go.

I want to say that I wish I could just deal with this one thing, but there are so many other things that I have to deal with too, and that makes it feel impossible. That makes it feel as if I will never be able to feel normal again.

And I want to say this here, because I can't say it anywhere else without feeling like a ridiculous child: It's just not fair. I know that life isn't fair, I live a pretty unevenly balanced life most days anyways, but this, it's just not right. It's just not fair.

I want to say so, so many things, but they all get stuck somewhere around my throat, and I feel like I'm choking on them. So, just... Thank you.

And, here's my Nana... know that she was loved.

I feel like if I don't write the words, then it won't be true, but it is.

My Nana died this morning, around 11:30.

I miss her already.

Hola chicas!

(I can't think of any male readers I've got, off the top of my head, but just in case: Hola chicos!)

Things are creeping along, hopefully in a positive manner, with my Nana: her feeding tube is working well, and she's being moved out of the ICU into a regular room. They've got four major concerns: 1) When will she be able to restart the radiation, because that tumor is ridiculously large and prohibitive to, you know, breathing normally, eating, & sometimes talking (plus, you know, it's fatal if left to its own devices, which is a very big deal). 2)Is it the tumor that is causing her 'episodes' (they think it is), and how do we prevent them during her treatment?
3)She's got a tiny bit of fluid in her lung right now, and they're not sure why, but they're pretty confident that sitting up, inhalers and nebulizers will help to clear that up & 4)Her liver levels are "off" which may be from not eating for over a week, so they're keeping their eyes on it to see what's happening with it.

Overall, I will take any positive thing: any little step forward is NOT a step back, so I'll take it. Thank you all for your kind words, wishes, and support.

In other news, I've been distracting myself from the hell that has been our house these past few days (oh, the PUS and their sanctimonious "She wouldn't want any tubes!" "I'm here to take care of you!" "Let me remind you of when your father died, or when your sister died, and make vague accusations that you don't care about your mother!" "Let me weep and cry at the idea of this woman's death, in public, even though I have been abusing/neglecting/hating her for at least 20 years!"), I've been following/catching up on the Cassie Edwards controversy.

If you have no idea what I'm talking about, I suggest you pretend you never saw what I just wrote, and instead just stop reading right her. Because, trust me, you will get sucked in! If you're still sticking around, I'll give you my very abbreviated summary of what the hell is going on:

Cassie Edwards plagiarized. A lot. As in, I can't actually see that more than 25% of any given book of hers was actually written by her. She plagiarized from research materials, from Pulitzer Prize winning novels, from the classics. (This will open a PDF of the evidence against her, if you're interested. It is long, and detailed, and painful.)

The plagiarism was uncovered by, and then outed by, writers and readers over at Smart Bitches, Trashy Books, which is one of my most favorite websites. The Smart Bitches are wonderful writers, have strong opinions stated in entertaining (and often hilarious) ways, and run a site with some of the smartest commenters I've come across. Because of this situation, they've been condemned by many as "meanies" ... and much worse. The idea that bringing this situation to light could be construed as vindictive, unfair or any of the other things I've seen battered around in the past couple of days is, in my point of view, ludicrous. They did us all a favor, and have taken a lot of heat because of it. I'm grateful to them, to the readers who continue to Google search (what I consider) poorly written books, & to everybody who's seen this and gone "WTH??? This is so wrong!"

Including, my favoritest romance author, Nora Roberts, who's had some experience on the wrong side of this issue (her work was plagiarized by 'author' Janet Dailey back in the late 1990's), and who, rightly, made a statement denouncing Edwards' plagiarism. Note: she didn't denounce Edwards - she merely stated that this is plagiarism, and that it's wrong & should be dealt with.

This has been, of course, seen as an attack on an elderly woman (Edwards is 71) by some people...who have been labeled the excessive "fann gurls", but as an excessive Nora fan gurl myself, I might take offense at the idea that I would support my favorite author should she blatantly steal her words from other people. As much as I love La Nora, should I find that her books are largely made up of someone else's words? I would be horrified. Then I'd be pissed. And you better believe I'd tell her (and probably anybody else who'd listen) how outrageous that is. And I'd want my money back, which I would then distribute to all the other people who actually did that work I enjoyed so much.

Anyways, there's this whole brouhaha (as there seems to be anytime anything happens on the Internet), but it really boils down to this:

You can't call yourself a writer if your book is made up of another writer's words. All you are? Is a pretty good copier. Who sometimes adds characters, commas, or stunted dialogue to whatever you are copying from. This does not make you a writer, and the fact that you've been able to last this long in this business is a disgrace.

The End.

(But thanks for the distraction, Smart Bitches! You can click on any of the Cassie Edwards posts over at SB by clicking on their link on my sidebar, and if you want to read a hilarious take on this whole thing, may I recommend Gennita Low's post over at A Low Profile?)

MBSM

It's a snowy day here in the Boston area, and, if I could get outside, I'd be wandering, trying to get shots of the heavy, tired trees.

Instead, this is what I can see outside of my window.


But, it reminds me of a wishbone, and we could use all the good luck we can get around here, these days. (Nana is hopefully getting her feeding tube put in as I type... please cross fingers right now.)

I'm going to distract myself by wandering through all of your photos, so I'll thank you in advance for the distraction!

I promise, I took a deep breath after this post

See, one of my problems is I have a very good memory.

And today, that's a problem, because I don't want to do anything: I don't want to read anything, talk to anybody, watch anything on television, listen to the radio, because I'm afraid of what today will bring.

My Nana had another 'episode' in the hospital this morning, and has been moved to the ICU. She's fine (or, as fine as she gets) right now, but they have no idea what happened, and are putting her through further tests. Her feeding tube surgery has been postponed, even though she desperately needs it.

I'm so afraid of today. I'm afraid to pick up a book, to start reading a magazine, or even to turn on the tv, because I'm afraid that whatever I do, it'll be the thing I was doing when I got the phone call that my Nana died.

I am hugely afraid of what today (or tomorrow, if we make it that far) will bring, and am almost frozen because of it.

I've been trying to distract myself online here, visiting sites, not really responding, not really all there. Distraction isn't really working, because a part of my brain, a part of my heart is at the hospital.

I couldn't go this morning, when my mom got the call: I'm just in so much pain from everything this week, was even kinda looking forward to having the day to rest (with Nana fine and settled at the hospital, waiting for her feeding tube). I got a shower last night, which I haven't been able to do in about 2 weeks, because of the shower coma, and having to be available at all times. I don't feel guilty about that, but I feel horrible about not being able to be there, even if she is just like she was before, not really up for conversation or company. It's the fact that I can't be there, right this minute, patting her feet, or searching the tv for yet another episode of Law and Order for us to rewatch.

I keep telling myself that this could all work out: her prognosis, even as late as last night, was pretty positive (once she got the feeding tube, she'd be much better through the rest of her treatments).

But today is a whole different ballgame than last night: I feel as if I have been learning bowling, practicing bowling, bought my own ball and bowling shoes, only to show up and be expected to play tennis.

And so, I'm here, just blurting out what I'm feeling, trying to occupy my mind.

And it's obviously not working that well...

Ranting a bit, sorry...

I've avoided talking about our family's health issues the past few posts, because it seems like, in person, that's all I'm ever talking about. And I am so, deeply sick of having to think about my pain level, or Nana's radiation, or my aunt's rehab, or Big/Only Brother's EKGs, or the twins weight in exact ounces. I'm going to do the quick roundup, while I am feeling up to it.

I don't think I even mentioned it here, but my cousin C had her twins at 33.5 weeks, (right in the middle of all this other nonsense) and they're having some health issues too. Fortunately, they are both at home now, but one is still very slow to gain weight & is being tested for genetic disorders.

Big/Only Brother has had no further seizures, thank god, and they're looking into a connection between the flickering televisions he has to monitor at his job (as the head of security at a medical school) and his seizures. Both seizures occured in that room, and he recently found out that a predecessor had seizures in that room too. Perhaps they trigger a certain disposition to seizure activity? Who knows... but if this is the issue, at least it can be addressed and evaluated.

Auntie L is home from rehab, and making great progress. She's still not allowed on stairs, and is living on the bottom level of her home, which she's not too happy about. Her blood levels (don't ask me, IDK which ones: they're being semi-secretive about her actual condition) aren't where they should be, yet, but they're improving. She's doing really well for someone who was not expected - by the doctors, and by us - to make it past Thanksgiving.

Nana's radiation has turned out to be horrid: She had a reaction to her pain meds on Monday (her first day) that had her throwing up all day and night, leaving her dehydrated and we had to take her back to the ER, who hospitalized yesterday morning, rehydrated her and gave her a different pain med. They sent her back home again last night, after her second radiation, and it was marginally better: she still slept away about 9/10ths of the day (which is fine, except that she gets upset at herself for doing so), but there was no vomiting. Her pain was better controlled, but still pretty bad - it went from a 4/10 to an 8/10 over the course of the day. She slept better, but not well. We're in charge of caring for her, Mum & I mostly, although Dad or my sisters can be called upon when necessary (so long as it doesn't involve puke: SisterCh literally dropped what was in her hands and fled when Nana threw up on Monday night). PUS, her son? Yeah... he's pissed cuz she's not upstairs with him. But he can deal because A) she can't climb the stairs and B)I don't trust him to take care of a Chia pet, let alone my grandmother.

As for me, I hate HATE how selfish this makes me feel, but this is all so incredibly difficult on me - emotionally, yes, but also physically. Nana has my bed at night, which is fine, because I don't sleep anyways, but also my aches and pains are used to my bed, and they're having issues adjusting to trying to rest anywhere else. I'm required to do a lot more: for myself, since Mum's caring for Nana & for Nana, when I'm the only one there. It's a lot more movement, a lot more intensity, a lot more pain. Where my normal levels are 7 or 8 (out of 10), I know I'm functioning at a 9 right now. And barely functioning, at that. Between the stupid sinus infections, the double ear infections, and the almost unbearable level of pain (not to mention the stress of all of these situations, plus watching the baby - tomorrow's our first day since Nana started her treatments, and I have no idea how we're going to manage that: Disney movies seem to be my most realistic strategy - and helping to plan the wedding and the zillion other everyday things that have to get done.)

I think these are the times I would most like to kill the people who say things about CFIDS/FM like "You're just using it to avoid real life." Because, your real life? Doesn't stop because you're ill. You can't avoid your grandmother's cancer because you can't move without tearing up... you just have to deal. Having a chronic illness magnifies all the challenges you face during your life, it doesn't shield you from them AT ALL.

Now, I've got an appointment at the pain clinic, to discuss why this round of drugs is still not helping. After that, I've got to try to coax my 84-yr-old Nana into getting a feeding tube, because it's too painful for her to swallow. Obviously, my life is just peachy, b/c I've got all these 'excuses' to get me out of jail free.

Happy Wednesday, anybody who made it through the rant.

Getting back into the swing of things

with a Best Shot Monday post.

My Best Shot Monday is now being hosted over at Mother May I?, Tracey's blog, as ClubMom (and therefore Picture This) is kinda kaput. That's ok, because now I can remember the name of Tracey's actual blog, where before I kept forgetting. And there's supposed to be a new code soon, for a badge... I'll fix it when I get it.

Onto the shot:

Amid flare, double ear infections, and a sinus infection from hell (and that's just me), the hospitalizations, the treatments, the endless negotiations with an 84-year-old woman who's more stubborn than a goat, there were the holidays. And The Clump, which has finally peaked and will now start to wind down. We weren't exactly all feeling the festive so much these past few weeks, but we did dinner for Mum's day, and SisterCh picked the Monopoly for hers. (After first saying she didn't want to do anything - because she broke up with/is still fighting with the boyfriend, then getting pissy and crying hysterically when nobody showed up. Ah, the unnecessary drama of sisters! Joy o' joys. She turned 22 for God's sake, not 12!) And so, because I could NOT play another game of Monopoly (bringing my total for three days up to 4 games) with this damned sinus infection and the HEADACHE it's caused, I declared myself official Monopoly game photographer and took pictures.

My family thought I was insane, as I tried to get Spongebob (it was Spongebob Monopoly this time, and don't even get me started on how much I don't like the different Monopolies - I now just call the places by their colors, and it's still a railroad, damn it!) at the perfect angle, with the dice in the light behind him. I don't really care that they think I'm crazy, because I can assure you that the feeling is mutual.

At some point, my goal became trying to get different depths of field captured correctly... trying to get the piece of each person clear and defined, with the person moving it sort of fuzzy in the background. I very much do not know how to do this, and will not tell you how long it took me to get this picture (or how many pictures it took.... thank God for digital!)

BUT, now that it's done: I LOVE IT! So, here is my definitely best shot for this week (and, yes, I know I still haven't posted my Christmas pictures, but I'll get around to it, because they'll be cute whenever...)

Ta Da!

So, there's still a bit of tweaking to be done, but I've got a new look here! And I did it myself! And it took for-freakin-ever! But it's up!

AND

It's a good illustration of the word I've chosen as my keyword for this year: Closer.

As in, "It's not perfect, but it's closer to what I wanted."

I thought long and hard about what I wanted out of this year, and once I threw out all of the 'miracle cure' and 'totally happy and healthy' pie in the sky things that I have no chance of making happen (although, should they perchance occur, I would have no qualms about accepting them into my life gratefully and graciously), I finally decided that all I want is to be closer to some of my goals by the time 2009 rolls around.

I don't have to be in perfect health, but are there things I can do to help me get closer to healthy? Sure. So why not do them? What am I waiting for?

Same goes for my weight: I am not going to lose 60lbs. while I'm on the meds I am on: it ain't never going to happen. But can I get closer to where I'd like to be? Absolutely I can, and there's no reason not to take those steps.

The key to this year for me, is going to be -

1) Doing what I can, in whatever the situation is

and - JUST AS IMPORTANTLY -

2) Being ok with what I can do. Accepting that I am doing what I can, that I have limits.

Like with this website: Rather than continue with the old design while I obsess about every little aspect of this one, why not put it up? Is somebody else going to think "Oh, well, I think that this color here is about 3 shades off, why'd she do that?" I doubt it. (Although, if there's anything really screwed up, or not showing up that was here before, I would appreciate it if you'd drop me a note. Also: Are there any AdSense users out there who'd like to share their experiences? Thanks!) So instead of driving myself crazy over what isn't done, I'm giving myself credit for what I did do: Designed a simple header! And a footer! (And, hello, was surprised at how easy it is - Photoshop! -, and will now be working on ones I like even better.) And figured out where to find all the numbers for these colors! And so on. Did I know how to do any of those things this time last year? No, I did not.

Showing myself how much closer I am getting to getting the hang of this blog thing - and to giving myself credit for things. Yay!

So, here are a few of the things I would like to make progress towards over the course of this year:

Closer to healthy

Closer to independent

Closer to employable

Closer to being a good photographer; to understanding what the heck an F-Stop is (even though I thought I got it, I don't); to being able to fix some of the things on the camera while I'm taking the shot, so I don't have to fix them in Photoshop; to someday getting a good SLR camera

Closer to happy

Closer to being a more knowledgable blogger, a more reliable poster; a better blog-friend & commenter

Closer to knowing what I'm really capable of

Closer to certain members of my family (and not closer to others)

Closer to understanding - and being able to do something about the way I react to - the behaviors of the people around me (a certain almost 2 year old and a certain 84 year old are at the top of this list, today)

Closer to knowing what's wrong healthwise, and how to fix it; to eating better and reaching a healthier weight; to capable of withstanding every.single.germ that travels within 500 yards of me.

Closer to kind; to gracious; to giving without expecting a return

Closer to free


Some of these are very broad; others much more specific. Even for the broader ones, I have an idea of where I want to go, and the next step or two on my way to get there. And I really don't think that's too much to expect from myself: to amble along the roads I want to amble down, no matter how slowly I have to go.

Happy 2008, friends: May we all be happier, healthier, and have the strength we need this year.

Love, NTE

Moving right along...

I hope your Christmases were all wonderful: I am trying to take it easy in an attempt to recover from the flare (Is it one long flare now? or a million little ones? I honestly don't know - or care - at this point. I'm sooooooo over the flares, my friends.), but between Christmas, our medical chaos, the birthday Clump and other assorted nonsense, I'm not exactly getting much recuperating done.

To be honest, I am sick of thinking about everything. About me, about my grandmother, my aunt, my brother, his kids, my mum, any and all of my sisters.... just the whole dang thing. I would like a long, extended vacation from all drama, but that does not look to be on the menu. And so, we deal.

And I have to say that coming here, reading all of you, well, it helps me to remember that I'm not the only one dealing... that we're all just taking our own tiny steps, getting through each day. And it's good to feel not so alone.

Looking forward at 2008: I'm not usually big on resolutions. I have trouble holding myself accountable for arbitrary things, and generally, if a change is necessary, I tend to try to deal with it then, not wait for the new year to roll around. (I don't always manage to do that, but I try.) So I don't usually do a list of resolutions, and I don't think I'll do one this year either, but I want to do something. I need... something. I want to say control, but that's not exactly it. I need... some, power, maybe? In my own life.

IDK, exactly what I am trying to say. I feel so... swept away. Like I have so little say in what is happening in my life - from my illness, to where I live, to how I spend my day. To the illnesses of the people I love, to how other people's actions and behaviors influence me, to ... just, so many things, large and small. Time is passing, days and months and years, and I feel: stuck.

Not always, not every day and in everyway, but tonight, and lately... it feels overwhelming.

And so.

And so, I'm thinking of adopting the very wise idea I first read about at But You Don't Look Sick. Spoon Theory author and website founder, Christine Miserandino talks about picking just one word: a theme for the new year. It's an achievable and encompassing goal, to my way of thinking. It allows for both specifics and generalizations... a word that has meaning to me and can be easily remembered when I am faced with something that I feel like I need to change.

Of course, now I need to pick a word: a keyword that will help to guide me through what will most likely be a trying (and downright difficult year). I've got a few words rattling around in my head tonight, I'm going to let them simmer a bit more, and then settle on one.

Meanwhile, I'm interested to see if you all are resolution-ers, or if the start of the new year is just another day of you.

Hey everybody!

I'm totally out of it, or at least I'm predicting that I'll be totally out of it, based on previous experience, so I'm writing this now to post later.

I've signed up to "Whore My Loot!" , but if I'm posting this as an alternative, it's just cuz I'm not feeling up to taking pictures (or typing... or probably doing anything except staring into space and remembering to press the "post" button). I'll get around to my own, received loot later, but how'd you like to see what I gave out this year instead?

I'm kinda proud of a lot of my gifts this year: having used my good sense & not spent big time $$$; having gotten very specific and individualized presents, and having discovered the joys of Esty, I really felt like this year I did particularly well.

So here's some of what I'm planning to give tomorrow (or... rather, have given and been exclaimed over!)

I spent the year picking up bargains on DVDs for Older/Only Brother, of movies that we'd enjoyed growing up. Here's a few:




For SisterJ, I got a print of an angel statue, sleeping:



And a print called "If Humpty Dumpty was a girl" from Esty artist, the Dreamy Giraffe, whose artwork I lurve...

So much so that I also ordered:
For Youngest/Only Niece:


For Her mama, STB Sister-in-law:


(Ahem... I may have also kept one for myself... ya never know.)
I wanted to keep SisterK's present for myself, but I bravely wrapped it up instead:

Isn't it gorgeous? It's also from Esty, from Little Dear, totally droolworthy prints, I promise.


Lil Girl/Only Niece also got the latest adventure of her favorite animal:



College Roommate/Best Friend got a framed photo of her daughter & Lil Girl, having a blast over the summer:


And SisterCh got yet another Esty find, a Monopoly necklace. Monopoly is her favorite game... it's kind of an obsession. So, hopefully she'll love this too:


There's more, but it's Christmas Eve and I'm still wrapping, so I'll type more later. Since I'm meant to post this on the 27th, I hope you all have had a fabulous, peaceful holiday.

I should be checking in soon.

Love!

Dear Shoppers -

You may not be aware of this, but that roll of wrapping paper? Is right at neck level for individuals in wheelchairs. Who may also be trying to shop. And who would rather not be poked in the back of the neck with your purchases.

It would really help me out a lot if you took the time to notice that, um... hey, you have a big, long tube sticking out of your cart.

Like a lance.

That is aimed at my face.

And I would prefer it not to make contact with that face.

Again.


I realize it is just wrapping paper, but you are not leisurely strolling through the store, setting a snail's pace so that the roll barely grazes me. No, you are intent. You are on a mission to possess something that the store is probably already out of anyways, and you must get to where it is hiding, RIGHT NOW. And so, the force with which your festive cardboard bayonet pierces me is surprisingly strong.

And yes, I am taking into consideration that I have a very low pain tolerance level, but I also submit that anyone would be, at the very least, uncomfortable with all these dangerous weapons encroaching on them.


Also? Should your wrapping paper lance make contact with my body, the appropriate thing to do is not to glare at me as if I have somehow floated in, invisibly, in order to spear myself on your roll of wrapping paper. Surprised? Indeed, the correct response might be to ask if I am all right, or to apologize for ramming an object from your cart into my head. Just a suggestion.

MBS -- Tuesday?

Just because I really, really, really need some cheering up, let's see what the first Christmas picture to come up in my slideshow shuffle is... no matter what, I'll post that one.



ooh... it's a good one.

This is Older/Only Brother, Christmas Eve 1988, lighting the candles on the altar. This is one of his signature poses, the over the shoulder glance... For his scrapbook this year, I've got a page just of him doing it. (I'll try to take a picture today, but one of the reasons I need the aforementioned cheering up is that my stupid printer is not working. At all: it takes a piece of paper, immediately tilts it, then proceeds to tell me there's a paper jam. You think?? It's cuz you're eating it crooked! :Sigh:) Anyways, he was an altar boy for a number of years. Back before our Catholic churches allowed 'altar servers,' and there weren't that many boys in our neighborhood. Between that, and the fact that we live directly across the street from the church, he served at a lot of masses, got the pick of assignments. This is right before the children's Christmas Eve Mass, 1988, he's 12, I was 9 and in the pagaent as... probably a non-speaking angel that year.

He's a cutie, and I gotta say that Lil Girl and her big brother do have so many of his mannerisms, it's kind of amazing.

Alright, that kinda worked... I'm going to go curse at electrical equipment in my room. And hopefully take a shower, cuz we've got Lil Girl tomorrow, and I know it ain't gonna happen then.

Off I go...

MBSM: A Christmas Past.

Wandering around and seeing all the My Best Shot Mondays is a real treat for me, and pulled me (at least partially) out of my funk today. So I'll share a MBSM with all of you, of a happier Christmas..

Here's me, Older/Only Brother, & Oldest Sister/SisterS, Christmas 1984:



We're laughing at something crazy SisterJ (then almost 2) was doing, but I can't remember what it was. This was the year of the fake Cabbage Patch Kids - the kind with little bumps on the sides of their noses that looked like warts. The kind that you bought in pieces - heads, arms, legs, and trunk, and then assembled yourself. Trust me when I say that finding your grandmother's stash of doll heads by accident one year is plenty freaky, no matter how old you are.

Hey, this is pretty fun: I think, due to the cheering up aspect of this whole thing, I will try to do another one tomorrow ---> there's certainly plenty to choose from. Maybe I can find the one where my Dad is ready to punch out Santa, or Santa on crack, or find a year with authentic Cabbage Patch Kids... I know they're all here.

Oh people...

I really feel like, if I were happening upon this blog, I wouldn't believe half of the stuff I write about. I just retyped it all here, all the crap and confusion, all the chaos and clusterf#%^s, but it made me physically ill to see it all typed up again, all at once like that. So I erased it, wishing that I could erase it all from my mind, my life, just as easily. If only.

Today is Older/Only Brother's 31st Birthday. He has not been "the best big brother a girl could ever hope for," because this is not a made for TV movie. No, this is real life, and sometimes, he really sucked: He made fun of ever pimple I ever got, and teamed up with one of our cousins to christen me Moo-Cow. He used to make me play sting with him in the schoolyard near our house, even though (or maybe because) I was a sports equipment magnet and would wind up getting hit in the face, or the back, or the neck with the ball and would walk around for the entire summer with round bruises showing on every bare inch of skin. He is merciless; I am "overly sensitive." He's a master manipulator, and has taken advantage of me, at times. He had his own room, while three of us girls (sometimes 4) were stuck together in another. He almost never remembers to call when he says he is going to, or people's birthdays. His temper is legendary, still, and he once went through a period so dark he thought we'd all be better off without him, and did something I don't know if I can ever fully forgive him for.

But he's my big brother.

And I love him.

Because he is also an awesome guy.

Because, he used to let me 'help' him sort his baseball cards... and resort them. And sort them again. Because he was the first one of my siblings to understand just how much it sucks to be sick all the time, that I wasn't faking, that he really didn't get it (and probably never would), but that I needed him to help me out. Because even though he disagreed (maybe still does) on my position towards our father, he stopped trying to convince me of how wrong I was, when he realized that it was what I needed him to do. Because he trusts me to take care of his kids, and knows that I love them with all of my heart, just like I love him. Because, when we were little, he would drag me around behind him, in a laundry basket. Because I gave him a hernia. Because he's trying to be the best father he can, and growing up and accepting his responsibilities, and making me proud of him, every day. Because he sat through recitals, even if Mum made him. Because he's strong and doesn't see it, because he's smart but sometimes forgets. Because he puts his finger out like ET so that we can 'hug.'

So, when the phone rang from his (soon-to-be)in-laws place early Friday morning, I just thought that it would be him, asking us, last minute (AGAIN!!) to watch Lil Girl. And I was less than happy with that thought, but rolled over to get the phone anyways. And heard from his MIL that his job had called and told Soon-to-be Sister In Law that he'd had a(nother) seizure. This is his second seizure, ever, as far as we know.

His first happened in early June, and he was diagnosed with a seizure disorder, which he didn't believe he had (since he was also dealing with a pretty serious painkiller addiction, and was mixing them with his RX drugs, so this was thought to be the most likely cause of that episode). However, they did an EKG and put him on Depakote, and he was fine. But on Friday, he had a much less serious seizure, and was taken to the ER, and they found that his Depakote levels were ridiculously low. So, they doubled his dose and said that he needs to be more religious in his medication taking.

He's ok, he's fine now - a little achy, a little freaked out, because he honestly didn't think that the seizure disorder thing was going to be a real issue in his life, and now he has to rethink that. It's a pretty frightening proposition, you know, when you realize that your body isn't really under your control. When you start to think that whatever you've got, it could be with you forever. It probably will be with you forever. And now you've got to deal, you've got to cope.

I have to say, though, I'm getting really sick of coping. I'm getting sick of answering the phone to some new disaster, major or minor - "Someone mangled my driver side mirror while I was in the house;" "The basement refrigerator stopped working - no wait, maybe it's just unplugged - no, it's definitely dead;" "I presented your case at a health conference of immunologists - 2000 of them, and they were all amazed, but they didn't have any concrete answers for us!" I'm getting sick of having to type out the horrible things that are happening, of having to remind myself of how much worse things could be.

And, they could be So. Much. Worse.

Older/Only Brother is fine today, on his meds.
My aunt is improving enough that they let her use a walker to get to her in-room bathroom once today.
My Nana is being stubborn because they want to put a feeding tube in, just in case, while they do the radiation, but doing the radiation gives her an 80% chance of remission.
My cousin's twins were born on Monday, almost full term, and a respectable 4.5lbs and 5.7 lbs. Yes, they're still having trouble with feeding, and we haven't been able to see them because they're keeping them in the NICU, but they're alive. My cousin came through the delivery ok, is up and moving again.

Honestly, everybody is doing as well as can be expected for their own situations. And I am wholeheartedly glad and excited about that.

I would just like for there to be no more situations, if that is at all possible.

---------------------------------
I am determined to write/post something uplifting soon... this blog is not here to depress me or all of you, and I could use something new and different... maybe even some pictures!

Ok so here's the thing

I didn't mean to write this post about how much you all mean to me and then totally disappear. Things got a little heavier around here, and trying to hold up my end of things has been ridiculously difficult for me, so something had to give. I'm SOOOO behind in my bloglines, I'm afraid to check them. I have been following a few blogs who's htmls I could remember on my own, but it's mostly been quick check-ins, just to make sure everybody's doing ok.

Which is also what this is: Checking in here, with all of you, so you know that I am ok, and I know you are ok. Well, ok may be stretching it a big, but I'm definitely hanging in there. Flaring seems to be my constant state, just lately. Stress, infections, cold weather: sooo not helpful. Nor is trying to step-up & help out more...that is really one of the hardest things, wanting to help SO MUCH, and only being able to do this much.

Brief update on family situations: Tomorrow is Nana's radiation consultation, and we'll find out her radiation schedule. The other night she choked on her medication (she's supposed to take them one at a time, but forgot), and literally stopped breathing right in front of me. Thankfully I was not alone in the house with her, because I screamed for my mum while franitically trying to figure a way to heimlich her while sitting - I was trying to get her to bend over the back of a chair... but it was forutunately unnecessary, as she threw up the pill (and quite a bit more) just as I got her to stand. This damned cancer is in her throat, it is a rather large mass, and it is obviously getting in the way of important things. I will be so grateful when it is no longer there, and am cautiously reassured by what her doctors are saying as far as how treatable this is.

My aunt is improving slowly, but we'll take whatever we can get. She still weighs under 100 lbs (this is a guess, but I would say about 85lbs): She is 5'7", naturally slight, but this is majorly different. She's starting eating again, and they're weaning her off her feeding tube. So, that's good. She's not 100% back, mentally yet, but that doesn't mean that any damage is permanent. She's had some adverse reactions to drugs, so those could be contributing. Either way, it's nice to have her be able to hold short conversations, to know that she recognizes me again.

The PUS continue to terrorize us all, and I am so over them. I'm trying so hard to ignore their acts, but it is hard. I just spent two days on the couch (on the other side of the house) when Mrs. PUS decided to pour gasoline in the snowblower - right outside my room. Mr. PUS continues to campaign to get Nana to change her will, her medical proxy, her ... everything. And to maniupulate her into seeing him as the injured party - to the amazement & detriment of us all. Including his critically ill sister & mother (Auntie E, Nana), his chronically ill niece (um.. me), & his completely overburdened sister (Mum). It certainly shows that he's changed and deserves the 'benefit of the doubt,' does it not? It is beyond my understanding why Nana can not see how harmful he is, and continues to insist on inflicting him/his beliefs on all of us... even to the point where Auntie E's husband has almost banned her from her visiting Auntie E, if she's so determined to bring him up. The whole thing makes me want to throw up.

And this has turned out to be not as brief as I'd thought, and, as usual, I feel better for writing it down.

Now it's your turns: Everybody good? Anybody got good news? I could certainly use some. Let me know what I've missed, if you get a chance.

Love, Me

No more NaBloPoMo

Today is the last day of National Blog Posting Month, and I made it, again. I almost stopped caring, quite a few times, when things started to get heavier and heavier, but it gave me something else to think about besides what's going on here, and that wound up being a good thing.

Last year, after I finished my first NaBloPoMo, I was all "I can do this, this posting everyday thing: I'll keep it going all year." Yeah, this year, I know better - t'ain't gonna happen.

But, I also know I'm still committed to this, this sharing with people thing. I hate how my best ideas for blogs happen as soon as I click the little "Shut down computer" button. Or in the shower. Or while I'm too sick to roll over and type. But I love that I have this almost constant voice in my head that's urging me to write.

Because I am a writer - I've always written, assume I always will.

I may not be the best writer, but trying to figure out the right words to say to make people feel what I am saying is important to me. (Sometimes, too important, hence the multitude of unpublished drafts in my post listings... if I can't find the right way to say it, I probably won't say it at all.)


I also know how important all of you are to me: my readers and the writers of the blogs I read. I'm addicted to, and committed to, this community. All of the smart, funny, brilliant, quirky, understanding, thoughtful, determined, and generous (mostly) women I've met since I fell into the blogosphere.

Every single person who I 'know' because they've sat at their computer, turned on their brains, moved their fingers and opened their hearts to the world.

To me.

It's funny how often I start a conversation with "Well, I was reading this blog and," or "You know my friend Janice said," ...or Miss Zoot, or the Goldfish - you know, all of these people I've never actually met but who feel closer to me than my in-person friends?
Or how so many of the quotes going into my collected wisdom folders are from blogs.
Or how a trick/technique I've read about here becomes a part of my daily routine.
Or how often I will be doing something (watching TV, eating, sitting in a doctor's waiting room again) and something I've read in the blogosphere will pop into my head.
Or how frequently I find myself sending good vibes to places I've never been, except in my heart.

So, with all that's going on in my life right now - and all I can see that is going on in all of yours - I'm grateful that we've got these places, these little refuges.

I started this blog more than 2 years ago, looking for an outlet, a very necessary place to call my own, even if it wasn't a physical place. I never dreamed that it would also be a place where I would feel so connected - to myself, to women, to mothers, to the world.

In real life, I'm so often the misfit, the one who doesn't/can't just blend in: I'm too sick, too lonely, too straight laced, too weird, too anxious, too abby-normal.

And yet here, I belong.

I'm just another voice, just another open heart.

"And then

NTE fell asleep for a thousand years. And there was much happiness and rejoicing all through the land."

Which is a pretty good alternative to my actual life right now, so if there are any positions available in fairy tale land, please be sure to let me know.

Also... is anybody there? Did I chase you all away with all my whining & convoluted explanations (which would suck. For two reasons: 1) I like you all & 2) I'm not all that likely to stop venting here.) Or is everybody all caught up in the Christmas?


The Christmas seems to presently be evading us here at Chez NTE, given the heaviness of recent events/news, it's hard to be light and fluffy. I literally swore when a certain Christmas carol came on the radio yesterday - it felt so out of place to me it might has well have been June 29th.

My aunt is steadily improving, thank all that is holy. She's awake now, but we're still not certain what the issues really are. She's still very confused, but knew her sister enough to stick her tongue out at her, so she's starting to resemble her old self, a little, at least.

My Nana's biopsy results are due in tomorrow, but the doctor is pretty sure it's throat cancer. "Highly treatable, and usually curable" is a direct quote, but, somehow, the C word is so overwhelming that it's hard to see beyond it, just now.

We did have LilGirl today, though, and even though I was not in a place physically to be caring for her, I said screw it, because she cheers me up so much. It's nice to laugh at somebody giving a kissing parade, in the midst of all this crappola.

Also? For The Christmas?


I would like her coat, only with the furry part on the inside, because it is so freaking cute and snugly, I almost made her wear it around the house all day.

She loves to see the babies...

... and I can't pass them up either. Besides, it helps me to be not obsessing.



So, there we go.

"anywhere but here"

You Should Spend the Holidays In

India - where your Christmas tree might be a banana or mango tree

What Country Should You Spend the Holidays In?

Just needed something light and fluffy for today.

And now for something completely different...

I'm going to confess that I have not yet read The Dangerous Book for Boys, even though it seemed like something I would probably enjoy. I haven't for 3 main reasons:
1) the ginormous size of my To Be Read pile
2)the fact that it was surrounded by hype ~ I am not a literary slob, but, having followed a few of the "must read/ bound to be a bestseller" trends, I find that I almost always disagree with popular opinion about what is good (Harry Potter is the only exception that leaps to mind, and I was on that bandwagon from just about the beginning. The DaVinci Code, on the other hand, is, in fact, almost entirely the reason for my skepticism towards letting the media steer me towards a particular book)
and 3)I just didn't like the title. The feminist in me instinctively balked a bit at a book whose title proclaimed it a boys-only zone.

But, I continued to hear good things about it - from people whose opinions are significantly more reliable than any list I've ever seen, and began to think that the only way to either confirm or rebut my initial reservations would be to read it myself. So, I added it to my ever-expanding TBR list, realizing that, given the Biblical proportions of that list, I'd get there eventually.


And then Mama Talk gave me the opportunity to review The Daring Book for Girls, the female counterpart whose publication was inevitable given the success of Dangerous. And I thought, "Why not?"

If it was as bad as it could be - all fluffy, filled with fripperies & frivolities, and ... pink, well then I'd have quite a review to write. And if it wasn't, then not only would I have a great review, I'd have a book to put on the keeper shelf, to add to Lil Girl's library, to recommend to my friends.

And, luckily, it is this second review that you're going to read.

Because, while it certainly doesn't - and shouldn't - ignore all things 'girly,' The Daring Book for Girls doesn't just cover those things - instead it strives to give its readers as a sense of perspective: that there is a world full of things to do, skills to learn, people to read about, choices to make, and all a girl has got to do is take the first step.

"Consider the Daring Book for Girls a book of possibilities and ideas for filling a day with adventure, imagination - and fun. The world is bigger than you can imagine, and its yours for exploring - if you dare." (Introduction)

It's not about boys or make-up or losing weight or sitting quietly, and I can't say how truly awesome that is. It's about making your own fun, your own adventures, your own choices. It's about learning from women who've dared, who've leapt, who've led - many of whom you, unfortunately, will never learn about in school. Curiosity, patience, wisdom, wit, adventure - that's the spirit this book is written in.


Andrea J. Buchanan & Miriam Peskowitz write in such an entertaining, engaging style that I can't imagine anybody who couldn't find something interesting between the covers. It's like an encyclopedia that's only filled with things you might actually want to know.

The illustrations, by Alexis Seabrook, are simple and purposeful, and there's -thankfully- more than one chart to help you follow along as you go.

There were more than a few topics that I wondered about their place in the lives of modern girls - Clapping games are still popular on schoolyards, but pegboards and willow whistles aren't exactly X-boxes or Barbie's Dream House... However, I don't necessarily consider this a drawback: There were a lot of things that I never did as a child, but maybe if I'd known how to, I would have. Daisy chains or a lemon powered clock would definitely have tempted a younger me. (Ok, I'm still tempted, but we've got no daisies, and I don't think I'm going to explain to Dad - who does the food shopping - why I need lemons.)

And they also include a lot of things I think should make a comeback - letter writing and tree swings, lemonade stands and female pirates.


It's also not just for 'little' girls -
I'm not ashamed to admit that I learned quite a few things on my first read through. For example, while I'm not interested in sports (and will never understand the obsession with them), I also don't like to not understand what people are talking about. I suppose I could've googled what a power forward was, but I didn't care that much. Now, I don't have to look it up.
I still can't change a tire, but that's more about the physics than a count against that entry. And I'm interested to see how the salary negotiating or public speaking guides measure up in real life.

And although I'm not as daring as I once was, this book provides more than a few adventures I'd still be willing to try out: Making a snowball that doesn't fall apart once it leaves your hand, tying a sari, whistling with two fingers (which, I swear I have been trying to learn how to do for years), finding ways to incorporate brobdingnagian into the conversation - or to call someone my flea in French.

I'm happy to be able to say that if you've got a little girl to holiday shop for, you should add this to your list. Honestly? Add it anyways - put it under your own tree, and learn how to supply a toolbox or what the heck a Chinook is. Go for it. Dare.