Tuesday, January 29, 2008

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.

Saturday, January 19, 2008

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.

Wednesday, January 16, 2008

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?)

Monday, January 14, 2008


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!

Saturday, January 12, 2008

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...

Wednesday, January 09, 2008

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.

Monday, January 07, 2008

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...)

Thursday, January 03, 2008

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!


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


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