This year's word*

*This year will be brought to you by the word "Share"  - alternate, very Sesame Street-styled post title.

As always, I gave a lot of thought to what I want this year to be and provide, the benefits I'm hoping for, and the weaknesses I'd like to overcome.  I actually came up with this while writing my last post of last year, as I was going through my list of moments that mattered most to me, and trying to come up with ways to create that feeling as much as possible this year.

What it came down to, really, was that a lot of those moments were spent with the people I care about, or were about me being open to new things/people, or about embracing parts of myself that I have (in the past) tried to ignore or downplay. So this year's theme word is going to be sharing.

Sharing the parts of me I generally keep well hidden - including being more honest.  Both in general - I'm not some huge liar or anything, but I tend to keep things fuzzy and broad when I'm talking about myself - and, more specifically, about my health. Which, for me, will mean answering more truthfully when people that care ask me how I am doing. My stock answer "I'm doing" is both a family joke and technically true, but if I get the sense that the person who asks actually cares and actively wants to know, I'm going to attempt to be more open about how I'm actually feeling.  There are two keys here - 1) Only giving real information people I know aren't just asking as filler or who want the broad strokes answer and 2) Finding some sort of middle ground between smoothing things over and trying to accurately explain to people who love me how much I am truly suffering. After more than one missed opportunity last year, and a few run ins with family members saying things like "I don't even know what you're diagnosed with" or "Is that new?" about a serious heart problem I've had since I was a teenager, I feel like I'm doing myself a real disservice with the standard glib answer. So, where and when it is possible, I'm going to share this piece of myself a little bit more clearly.

Sharing means being open to new experiences and people and plans - both offline and on. I'm hoping to attend my first Con this summer (Boston Comic-Con 2014); I want to make plans with each of my siblings and nephews and niece for stuff we've never done before or stuff we haven't done in a really long time (and maybe get a portrait done for my mother, who's been asking forever); I'm going to be moving somewhere, somehow this year, and I've got to just embrace not knowing, and then wherever we wind up going; I've got to finally nail down a new treatment plan with Zach, even though I've been balking for a while (because all of the options are scary); I want to put myself in new positions & embrace being curious.

Sharing means taking more opportunities to create things, taking the things I create more seriously, and overcoming some of my fears about letting other people see/experience/know about those things. (It does not mean I'm telling my family about my blog, because Hell No.) But it might mean joining new forums, meeting up with like-minded creative people more often in real life, self-promoting a bit, or finally finishing some of the seventeen projects I've got in some form of unfinished.  It definitely means taking more pictures, writing more words, reading more books, playing more games, loving more people, embracing my inner geekess and librarian and letter-writer. 

Sharing means feeling feelings and not hiding them. Quitting the passive-aggressive bullshit and standing up for myself and others in more clear terms. More social activism - both online and in real life, if possible - and incorporating it into my own life better. Making sure my values are the things I'm living by, not just the things I'm hoping to live by.

Sharing is going to mean letting other people share more, being more open to other people's feelings and perspectives and lives with less judgment on my part. This is already something I've been working on, but I need to keep at it... I want to be the person people come to, and for some people, I am. I am very proud of that, and I value those relationships.  I also know I can't be that person for everybody in my life, but there are still some steps I can take to foster better relationships, and those I can take. This is going to be a rough year for my family, and some of them don't even realize it yet. I want to be as available as I can be - without getting taken advantage of (!!!) - because you're there for the people who matter to you, as much as you can be.

Sharing means more friend time, more chances for new friends, more linking and liking. It means embracing sadness but not the isolation it thrives in; having a good day and then telling people about the flare it caused and how that puts a damper on the happy; it means spreading my self-care strategies around so they can benefit other people.

Sharing is less hiding and more showing up; less worrying by myself and more accepting helping hands; paying compliments when I think them instead of hoarding them for later; keeping dollar bills and packs of gum in the car for people who beg on street corners; letting things I don't need anymore go out into the world where they can be of use to someone else.

Sharing is ...

It's just showing up more. And opening up more. And hoping that the world - or at least my little corner of it - follows suit.


And it's wishing all of you the happiest 2014 that there can be. Whatever comes, know if you want to talk about it, I'm here to listen. And know that you all play a large part in saving my sanity, if not my life, because I know you're out there listening too.

Ok 2014: Be nice to us.

"No government has the right to tell its citizens when or whom to love. The only queer people are those who don't love anybody"*

I'm trying to come up with a good answer for day 17, so we're going to come back to that.

Instead: Day 18: My views on gay marriage, which are much easier to clarify.

My views on gay marriage are that there should be no such thing.

Not because I have a problem with same-sex couples getting married, but because I have a problem with people trying to separate out one type of marriage from any other. There should just be marriage Period. The End.

You are straight and you want to get married? Go ahead. You're gay and you want to get married? Feel free. And so long as you are two consenting adult human beings (which goes without saying unless you are one of those people who think that same-sex marriage will lead to people marrying their coyote friends or something, in which case, why are you reading my blog?) then everybody else should just shut the hell up and mind their own business.

Also? I live in Massachusetts, and I'd be happy if we changed our state motto to "First in the country to give all loving couples their unalienable rights! Get on board America!" (Or something along those lines but much more witty.) I have no patience of bigotry of any kind, and institutionalized bigotry (I'm looking at you DADT!) should be immediately corrected and left to the history books where it belongs.


*Rita Mae Brown
Bonus: I found more than one good quote for this entry, so I'm including a couple, just because I can...

I'm a supporter of gay rights. And not a closet supporter either. From the time I was a kid, I have never been able to understand attacks upon the gay community. There are so many qualities that make up a human being... by the time I get through with all the things that I really admire about people, what they do with their private parts is probably so low on the list that it is irrelevant.

Paul Newman

People who can't think of anything else but whether the person you love is indented or convex should be doomed not to think of anything else but that, and so miss the other ninety-five percent of life.

Robert Towne

Everybody's journey is individual. If you fall in love with a boy, you fall in love with a boy. The fact that many Americans consider it a disease says more about them than it does about homosexuality.

James Baldwin

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Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself

33 days post op,

and I am starting to finally feel like I might actually be a human-type person again. I'm not springing into cartwheels, or feeling the magical special cure that I had, deep down, obviously, been hoping for, but I no longer feel as if someone decided to whack me in the face with a mallet, while at the same time letting some sort of giant lizard claw its way down my throat. You can imagine that this is a bit of a relief.

I managed to catch, in these 33 days, at least one sinus infection (either inadequately quashed the first time and capable of rebounding, or a party-bug who invited a friend over; impossible to tell) and a case of thrush that made me want to rip my tongue out and use sandpaper on it. Thankfully, the thrush has cleared up, and the infection(s) are on their way out as well. (She says, trying not to jinx herself this time.)

So I'm going to talk a little bit about a couple of things now, and I'm going to warn you that the very first thing I'm going to talk about is exceedingly gross. As in "Are you really about to tell the internet that...?" level gross. But here is where I talk about things that I can't discuss in real life/make my family understand, and so, you lovelies have a bit of forewarning that you might want to skip item #1.

Item #1: Every week since my surgery (and twice the first week immediately following the surgery), I have had to go to the ENT surgeon for a check in. During these check ins, he pokes at my face a little bit, looks up my nose, down my throat and in my ears - in short, all the things you expect the ENT to do. And then things take a dramatic turn for the worse, and I break out in the kind of flop sweat usually only experienced when the dentist turns around with that huge needle in his hand. Luckily, the ENT does not start poking me with needles, but, rather unluckily, he instead decides that now is the time to insert things up my nose.

UP my NOSE, people. My very tender, and much abused nose. First, he sprays a little numbing stuff, which is about as useful as tap water would be, and then he uses a long thin strip of cotton ball, doused in decongestants, and his looooooong metal pliers, and he stuffs the cotton ball up my nostrils. He leaves it there for a minute and disappears behind me, while the medicinal tasting decongestant drips out of my nose and down the back of my throat.

The first time this happened, I was a little bit shocked: I assumed that when he said he was going to use a decongestant, that he meant a nasal spray. And that was going to be bad enough, because my nose was already swollen and sore, and now he was going to spray stuff up there? Bah. So I was sitting there all shocked and drippy, waiting for him to take this gross stuff out of my nose when, all of the sudden, there's an unexpected noise behind me. A mechanical noise, a little hum that is entirely out of place. And then things go way downhill, way too fast.

Because the mechanical humming noise is coming from some sort of vacuum, not unlike an elongated, metal version of the doohickey that the dentist uses to suck spit out of your mouth during a cleaning, and the ENT is telling me that this damn thing is going up my nose to "clean out what's left."

Are you freaking kidding me??? This was not mentioned during the numerous pre-op discussions we had about surgery and aftercare; This was not mentioned in my aftercare instructions; This was not mentioned anytime during the previous 15 minutes I've been sitting here talking to you: NOW you are telling me, as you approach me with that goddamn thing, that you're going to suck stuff out of my sinuses? I am so not on board with this.

But, what choice did I have, really, since this is part of the after care - I'm going to go through all the pain of the surgery, and then have it be a waste because I didn't do the necessary follow up? I don't think so. How bad can it be, really?

Oh, it can be really, really bad. *I should put a disclaimer here that this was my experience, and the whole sucking out of sinuses might not be a big deal for other people: I can't really say. Except for another guy who was having the same surgery/procedure done on my first post-op visit who yelled really loudly from inside the room while I was waiting for my appointment, so he obviously didn't enjoy it either (if only I had known why he was yelling before I went in...). I can only say, that for me? It was a gigantic deal. Not just because I was already in a lot of pain, although I was, but because, to me, it feels like drowning.

The sensation of not being able to breathe through your noise is bad enough, but you add in the forced pressure of that little vacuum, and the fact that you can feel it not just in your sinuses and nose, but in the back of your throat? And it adds up to a completely overwhelming and painful experience. I cried, the first time, and (Mum told me later) was also, from the waiting room, quite audible in my distress. I cried the second and third times too, and I'm not even the tiniest bit embarrassed by that fact. (It was a little bit less traumatic the last two times, thankfully.)

It hurt, and I am already hurting enough.

But it was the panic that it caused me that was most distressing... the doctor actually told me to "breathe through your mouth" (as if I had any other options) "or you're going to have a panic attack". That is because you are cutting off my air supply, and my body, for some reason thinks this is a bad idea. He also appeared shocked that I would find this so upsetting, only adding to my impression of him as completely out of touch with reality ("7-10 days and you'll be good as new!"; "No patient has ever had a sinus infection so soon, post-op: are you sure that's what it is?"; "You should chew more gum to help stretch those muscles, did I forget to tell you that?").

The only good news is that I now don't have to go back for another month, baring additional issues, and that time, he may not even have to use the vacuum. Fingers crossed! End of totally disgusting and barbaric Item #1.

Item #2 - I have missed out on a lot of things in the course of the 33 days: a cousin's wedding (which apparently included much celebrating), my birthday, a college reunion I wasn't going to go to anyways (but I would've liked to make the my-girls dinner pre-party), Lil Girl's end of school celebration, No Longer Youngest Nephew's school report (which I have never been invited to before :( ), and more than a bit of family drama that I'm still trying to catch up with. Everybody in my family had issues during this period, and I feel like I am a page or two behind on the stories, which is a feeling I truly hate. I also feel like this lag in my understanding of things has caused new drama, which I have to figure out how to fix, but can't till my brain is back at full power, which sucks. This is one of the things I tried to factor into my decision to have the surgery - knowing I would be so far behind/out of the loop, and trying to make it be ok, but I absolutely hate not being there for people when they need me (and we can talk about why I don't expect people to show up for me when I need them some other time, thank you very much). It has been hard, playing catch up, apologizing for the gaps and lapses, the gaffs and digs I've delivered unknowingly. Or trying to, at least.

But at the same time, I'm trying to be realistic about this - I had the right to do something that, hopefully, is going to lead to a real improvement in my health. It wasn't selfish to do this, even if I don't get the outcome I wanted. Or, if it is selfish, only in a good way. This is one of the things I have decided to work on, about myself - that I don't cut myself enough slack about important things. Yes, it is vital to be someone that my family and friends can depend on, and it stinks when my health issues get in the way of that. But that doesn't mean it's not something that people should try to understand, and that doesn't mean it's something I should feel badly for (at least, not excessively so). So, I'm working on that. It is much harder done than said.

Item #3 I would just like to state, for the record, that I am through thinking about my weight. Because I ate nothing but soup broth and mashed potatoes, slush, bananas, and jello for, let's say 27 days, discounting the first two days (when I could only eat slush), and the last four (when I've been expanding into other, actually needs to be chewed types of food). And I think I gained weight, to be honest with you. So if I can't lose weight on three weeks of vegetarian, non-chewable mush, then I'm just not going to lose weight. So I better figure out how to like the size I am right now.

I think that's about it for now, before this post turns into a novel. I'll be back pretty soon (certainly more frequently now), and we'll talk about something completely different, won't that be nice? Please also know that I am, slowly but surely, catching up with my Google Reader (yay: The Collective is back in my Google Reader!), but it's taking me a while. If you have clicked through a new comment of mine on an older post of yours, welcome! Sorry to be so late to the party! I'm getting there.

Points of interest (ish)

For Lent, I am giving up not posting every day: It's my own personal NaBloPoMo! Basically, bad things happen in my brain when I don't have a place to blurt it all out, and since you all are kind enough to come back and listen, I should do my best to post as regularly as possible. And we all know that I do better if I feel I have to post, so I'm signing up for posting everyday till Easter Sunday, and committing to it right here on this nice bloggy thing. If When I make it, I will let myself get a little treat. Must think of good treat. Feel free to offer your suggestions below.

For my first post, I'm going to attempt the dazzling and death-defying bullet point post (oh! ah!):

• My parents may have found a house that they like enough to buy. They're going to the bank today to talk about putting down an offer so that they can get an inspection done. The only opinion I have about it is that it has a lot of stairs outside so that I cannot get in, and this does not please me. This whole house buying situation is showing me just how deep my control freak nature is - I am very uncomfortable buying a house I haven't been in, knowing I will have to live there for the foreseeable future. It's scary.
  
• Come to think of it, the house buying/having to move is bringing up a lot of issues that I'm not entirely comfortable with - the fact that I can't just go buy myself an apartment and have to keep living with my parents; the fact that my parents are not good with money and I just want to take it away from them (perhaps an allowance?); the idea that we've sold our 'family home' - it's been in our family for over 100 years, although it was originally a family run business. My great-grandparents moved here when Nana was just an infant, so from 1923 - 2009 my family has lived here. That's a lot of history to just be giving up on. And sometimes it does feel like we're giving it up. (I know we're not, it's just the closer it gets, the more I realize that this is forever.); the fear that my brother is trying to figure out a way to move with us into this new house (he didn't come out and say it, but he sure was asking a lot of questions about the house's finished basement, and the fact that it has it's own bathroom seemed important to him) because things are not going well with Soon-to-be (?) Sister-In-Law. A lot of things.
  
• We took my grandmother to lunch last week and she met three people she knew in the restaurant. I met 0. I was so happy for her, because she never goes out, really, and was so excited, but there was still a little piece of me that was jealous. Of my 92 year old Grandmother. Nice.
  
• I still haven't packed much of anything: A couple of boxes, but there's nowhere to put anything else, so why bother?


• Lil Girl is potty training and doing really well - no accidents at all yesterday. She came wearing big girl 'underwheres' (she says it like it's got that little h in it), and seeing them made me kinda sad, cuz she's the baby.
  
• This does not mean that we want another baby to take care of, so the universe should not see it as me putting out a call to any of my siblings. We are - none of us - in a position to have any (more) kids right now. I'd like to be, but that's a whole nother post.


• A little update from Friday's post about my TBR challenge - I suck at reading things I'm 'supposed' to be reading. If a new PBS book comes in the mail, I put it at the top of the pile - although I have cut down a lot on PBS incoming books, because I am trying to get rid of books, I still will say yes to a wish list book if it becomes available. And then when it gets here, because I know it's been on my list for so long, I read it first. I am totally counting this because it's been in my virtual TBR for longer than some of these books have been in my physical TBR. Counting it.
  
• I learned two new things while typing this post - how to do bullet points and strikethroughs on HTML. This makes me ridiculously happy.


That's all I've got for you right now... Check back in soon, because it's going to be a long Lent. :)

Oh Hai

Do you know what month it is?

If you said "February", as in the shortest month, as in the month before we have to move out of our house, then you are correct!

But you don't get any bonus points.

No, sorry I am hoarding the bonus points, as I have apparently hoarded Every.Single.Thing. in my entire life.

In case you couldn't tell, the packing? It is not going well.

And by "not going well" I mean, I haven't even started.
I have done a lot of what I like to call 'pre-packing' and what you might instead call 'not packing at ALL', but we'll just have to agree to disagree on that one.

'Pre-packing' mostly consists of looking at my room, crammed full of books and art supplies and teaching supplies and paper products and electronic equipment that predates my life, and wondering "How the hell am I going to pack all of this crap?" Other questions that get asked during the 'pre-packing' stage include: "Do I really need four sets of headphones, especially since I detest the ear bud type of headphone and will not wear them (the noise is in my ear! Who likes that?)?"; "How can I possibly get rid of this vital memorabilia from my life/my sibling's life/my parent's life/my niece &/or nephew's life? (And why have I made myself the receptacle for all of this stuff???) And yet how can I possibly store it all?"; "Would this be worth anything on e-bay or should I just Freecycle it? Maybe I should try Craigslist first?"; "What is the point of packing everything up if I'm just going to have to try to maneuver around the boxes AND the furniture for the next 6 weeks?" and Oh Yeah: "How the hell do I know what to pack, what to toss, what to store, if I don't know where the hell we are going??? (After all, you do tend to keep much less of your possessions at hand if you are living in your van.)"

The open houses are not proving fruitful, just yet, as sellers are wary of selling right this minute, and also, their houses are in really awful shape (and not applicable for wheelchair users, in most cases).

I am still strangely not panicked, as I assume I will be living out of a home for quite a while anyways (and have spent zero non-essential dollars since the beginning of the year in hopes of being able to supplement this nomadic type living): No matter where we move, it will need repairs, updating, painting , cleaning, etc. All of those things are smelly - even though we're definitely aiming for as smell/chemical free as possible - and not just short-term smelly... they smell for a while. So I am going into this assuming that I will be living on my grandmother's couch for some time - which you all know I both love and loathe - and that, at some point, the pain of the springy mattress and cushionless couch, and the need for a shower, will necessitate (at least) intermediate stays in a hotel.

(I no longer have alternative housing options with friends or family - all the condos are rented out and siblings are living with their respective in-laws, most of my friends are pet owners, all of my other family & friends insist on living in places with stairs... Plus? How awkward a conversation is that: "Hi! Can I come take a shower at your house please? And then I need to have a coma for at least 3 hours, so I need somewhere quiet to lay down. Thanks!" ...)

So the packing thing is extra tough - What will I need at hand in the next three months? In the next 6? How do I best pack things so that, if there's something else I haven't thought of, I can easily send somebody to find it? How much of my craft or healthcare entourage can I reasonably expect my grandmother & uncle to accommodate in their den? My computer's a must have, but what about the printer? I need the box full of patches, but can I live without the just in case cough medicines and sinus pills? I can't lug my three bookcases full of books, so how do I decide what I might feel like reading on a spring day when I feel like crap or during a late winter snow?

I am, as usual, conflicted: feeling both energized and drained by the thought of being somewhere new, feeling both a longing to stay and a wanting to go. It's scary, this change: it is for us all. I'm worried about so much - how this is all going to effect me physically, how it'll impact our relationships, our dynamics (if we wind up moving further north, will SisterNc & Big Brother decide, for example, that the drive is too much so we won't get Lil Girl during the week anymore?), how much more of the year we'll be rootless, and a million other things - and I know that each member of our family has different concerns and so it feels like we're in a snow globe, with each of those worries floating around us, constantly churning.

And we just won't know until we know.

So, I'm trying to just go with it, to not be constantly focusing on all of those worries, to just let them be there until we have some answers. It's tough, but it seems like one of the skills I've picked up along the way: living with the questions because there's no other choice. You keep working towards the answers, keep plugging along, but you don't let them bury you.

Still, it certainly doesn't make the packing go any easier.

Ok People

Here I am, much recovered (for me at least) and glad to be back.

I really have missed you, and wish I could be clearer about how the whole month of January managed to pass without me even really noticing, but I figure let's just move on from where we are: sound good?

My Nana's 1st anniversary was on Monday. It was a hard day, but significantly easier than it could of been because of a few little ironies that helped me & my family cope with the day.

During the 3 years of my blog that Nana was alive, I ranted more than once about her, so I'm pretty sure I've mentioned that she had very strong opinions on a lot of things, and was never quiet about sharing them with the world in general. She was a lot of fabulous and wonderful things: caring, generous, lovable, sweet, powerful, amazing.

She was also casually racist.

When I say 'casually' racist, I mean that, for her, it wasn't an active intense dislike or hatred of people who were different, particularly black people... it was more just a sense of "these people are different. That is fact. You cannot convince me it is not fact" and the attitude and actions that would come about because of that belief.

It was something that she and I argued about - a lot - and a part of her that I found cruel and ignorant, but it was a part of her. A lot of it was generational - she still felt perfectly comfortable using the N word (although was eventually convinced by us that it was inappropriate in public, thank the lord), would sometimes say things like "call a spade a spade," and would sometimes refer to desegregation & the civil rights movement as "the time when those people went crazy."
It was from her that I learned all of the racial slurs that I would eventually hear in history classes, and that's something I'm not particularly proud of. I know that there were generational contributions to our different value systems as far as prejudice went, but Nana's stubbornness cannot be discounted as a contributing factor. Yes: she was born in 1923, and grew up in a largely white, largely segregated community in Massachusetts that would eventually become a city that has one of the largest immigrant populations in New England. She was a schoolteacher in the 50s and 60s and lived through the forced busing desegregation scandals in Boston in the early 1970s. We live next door to a private school that went from all white to probably 75% minority over the course of her lifetime. In her mind, the changes that occurred in her classrooms over the years - the falling standards, the growing lack of respect for teachers and authority figures, the lack of parental involvement and caring - correlated directly to the increase in minority students & families. I don't agree, and I know that even she didn't think it was the sole contributing factor to why (in her words) "teaching now is not teaching, it's zoo keeping. I didn't go to school to become a zoo keeper."

On a case by case basis, my grandmother was completely capable of looking past skin color (and even sexual orientation, which for her was an even bigger button to push), and see that individual people were great people: When my youngest sister, whose mother is Filipino and who has (you may have noticed) much darker skin than any of us, was first brought home, my Nana said "black is black" when my father tried to explain that she was Filipino. But that didn't stop her from loving SisterK and from claiming her as her granddaughter (even though she, technically, was not). She had black friends and colleagues who mourned her loss just as much as her white friends and colleagues. She continued to talk about my best friend from elementary school (who was Malaysian) as "the sweetest girl I ever taught" and kept in contact with her family all these years later.

But even though she was able to look past race if she had to, the fact that it was something to "look past" was always there... you were black, white, Asian, Latino, and to her, that meant you were different. Until you proved otherwise. Anyways, I could go on and on about all of the reasons I think she was racist, or the reasons I don't think she really cared that I considered her racist, but suffice it to say that she was.

Which is why when I saw that her anniversary would be falling on Martin Luther King Jr Day this year, it helped to lift my spirits a little bit. The delicious irony of remembering Nana on a day when we're also remembering - when the whole country is celebrating - one of the most influential and charismatic leaders of the Civil Rights movement was just enough for me to not make that day into the hardest day we've had in a year. It was difficult - it was always going to be a shit day, and it wasn't as if I was running around singing and painting rainbows - but it wasn't a huge pit of awful that I fell into either. I think we all tried to sort of actively ignore the date as much as possible, but even as I'm writing this, I still get a little giggle out of how much Nana would've hated the fact that her day was MLK day. Just to really drive this home, I'm going to admit to something that is awful and embarrassing and just hateful all around... Nana used to call MLK "Martin Lucifer Koon" which is speech straight out of a Klan rally if I ever heard it and still makes me shudder to think of it.

Bearing that in mind, and bearing in mind that the very next day we were able to swear in our first African American president, and I hope you can see why this anniversary wasn't as hard as it could've been. And it's like a little inside joke that fate gave us, just enough of a twist to take the edge off of the worst of the grief.

I still miss her, and thought of her as I watched our new president make his wonderful speech without any dismissive comments from the peanut gallery. I think of her most days, when Lil Girl is doing something adorable and I want to call her to come down and see; when I've been sick in bed for three weeks, I want to shoot the TV it's boring me so much, and there's nobody to play cribbage with. When we leave the house and I still automatically look up at her porch to see if she's in the window. When the buyers were traipsing through the house talking about which walls they'd knock down and how there'll be classrooms here and there. When I look at mom and see how fresh the grief still is in her eyes; or when I purposefully don't go to the hospital (even though I really should have) because I just couldn't face going back there right now, during the time that Nana was there and so sick: I couldn't do it to me and I couldn't do that to my mom. It's still hard, every day to know that she's not coming back. But it's getting easier, a little. And the day itself had just enough grace to see us through. And for that I'm thankful.

I'm off to do something irresponsible and just for me today - instead of packing or planning or cleaning or any of the millions of things I should be doing: checking e-mails or getting through my google reader; cleaning out my closet or under my bed; sorting through the mail that's been sitting here since Christmas. I'm going to let it all go for one more day, and just do something I want to do (that I am up for) --- I'm going to scrap JUST because I want to. Not because I should (even though I should) and not because there are birthdays that need to be scrapped for. I'm going to do it for fun. Because I need a little bit of fun today.

So that's where I'll be... amidst stickers and patterned papers for the remainder of my day. I hope you all are able to do something carefree today too.

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.

There is a man - youngish, skinny, average height - who has started coming to church across the street. For three weeks now, I've managed to look up from something and see him climb out of a cab and up the stairs into the church. I think it is the cab pulling to a stop in front of our house, where there is no parking, that makes me look up. But each time I've seen him, I'm surprised: First because he is young, and the first day was a Saturday, in time for the 4:15 mass. At our church, the Saturday 4:15 mass used to be known as the old people's mass: There was the 9:00 Sunday AM Children's Mass, and the Saturday 4:15 PM Old People's Mass. (I don't mean that's what the church called it, just that's what we called it. We also called it the Cheater's Mass, because kids who skipped mass on Sunday would claim that they'd gone to the 4:15 the day before, knowing that it most likely wouldn't be disproved.)

So the fact that he can't be over 35 - and more likely is younger than me - made me remember him, and the fact that he's all dressed up: a neatly pressed suit, clickety shoes, hair obviously just combed down, makes me wonder.

I may be curious about inconsequential things, but I wonder a lot about this guy. He's just so out of place, and he keeps coming back, and my brain would rather ruminate on him than try to figure out where we're going to live in a few months or how I'm going to handle 3 appointments this week. So I've got a ton of questions about the poor kid: Why does he go to the Old People's Mass? What's up with the spiffy suit? The cab? Does he find what he's looking for at mass - is it peace or forgiveness or belonging that drive him to our church every week? Is he new in the area and doesn't have a car or does he come from further afield, and doesn't want to drive? Is he wearing the suit for Mass, or is he going somewhere post-Mass that requires such attire? And where could that be?

Like I said... Curiouser, and curiouser.

An outing, a book review, a little bit more

Last night I actually left the house for a non-medical, non-wedding, non-child related reason, and went out and socialized with adults!

I know, it's a shock and a half, isn't it?

I went down to Porter Square Books to meet the very fabulous Laurie, who was holding a signing for her brand new book A Life Disturbed. I'm going to start off by telling you all how utterly awesome this book is: If you read A Chronic Dose, than you know that Laurie's style of writing is intelligent, witty, and honest, which are pretty much the ingredients I consider vital in a good writer. You gotta be smart, you gotta be funny, and you gotta believe in what you're telling me, because any of those three things are lacking, I'm just not going to buy into it. Laurie is, of course, not missing out on any of those factors, and it makes for great reading on her blog and in her book.

The book is a series of essays that discuss what it's like to live with a chronic illness as a young adult. Laurie talks about so many things that I talk about here on this blog: how do you merge being independently minded and having to depend on people for your very health? How does society view those of us who are chronically ill (and how can we not care so very much about how people see us)? What are the gives and takes that chronic illness imposes on our relationships, and how do you cope with them?

I can't tell you how many times over the past 14 years I've thought that I was by myself. Even surrounded by a family who loves me and tries their best to understand, even with the few stalwart friends I had to support me at every turn, even with a doctor who kept pushing, kept looking for the answer: There were still (and are still) so many times that I think "I am the one going through this, and it's a lonely place to be." When I found my first CFIDS listserve (way back in 96-ish), it was like finding a tribe of 'my people' (as we called them). These were people who were my age, who were facing the same things I was facing. Who understood what it meant that I had to give up dancing; who cried with me when I missed my Jr Prom because I had pneumonia; who got together and made me a scrapbook when I was bed bound for 3 months. They understood what it was like to fight with your mom, but then still need her to help you get to the bathroom. To be missing classes and feel like you'd never catch up, but to care more about missing out on the talking that went on between classes or at lunch.

I started gaining friends from all over the world, with a wide spectrum of diseases: It didn't matter that our specific diagnoses were different, we still understood each other. They were the people who knew the shorthand of being sick, and I have been comforted immensely by their presence in my life.

When I stumbled into the medical blogosphere (about 2 and a half years ago now), I felt exactly the same way: These were the people who were saying what I was thinking, who I could ask about treatment or television or anything in between. Who understand that it's not all about being sick, but that it's never not about being sick. And so, my 'tribe' expanded, and I have been much the luckier for it.

I've been visiting Laurie's blog for about 2 years now, and she's definitely one of my people: She just gets it. She talks about all of the things that are important in her life, and because her life is impacted by her illnesses, than so are those things. Who she is isn't just 'the sick girl,' but she understands how it feels to be seen that way. In her book, and at the signing last night, she talked a bit about suffering and chronic illness, and how if you're going to go looking for plus sides to the suffering... and you'll have to look really, really hard, because it doesn't have all that many... maybe it's that you can see the suffering, understand the suffering of others. One thing about Laurie's blog, and now the book, is that her ability to empathize is front and center.

But she doesn't gloss over everything either: Life Disrupted is subtitled "Getting Real about Chronic Illness in your Twenties & Thirties," and it follows through on that... There's not a martyr or saint in the mix, and she busts more than one myth about disabled young adults. She talks about employment, marriage, money, & babies - The title of that chapter: "Can vs Should" pretty much sums it up, and I'll just let you know that I cried my way through that entire chapter, but that's something we'll talk about at another time. Even though there were some really tough parts, it was only because they're so true to life... to my life, anyways.

But there's millions of us out there: young adults with disabilities and chronic illnesses, who are all just trying to figure it out as we struggle through it. Everybody struggles - you all know how many things there are that you're making decisions about in your life, every single day: you know how complex and difficult it is to balance all of your needs together. Now imagine adding a chronic illness to that, and it's just one more thing that tips the scales. So it's nice to be a part of a community that helps you to work through those things, and it's nice to see that books like Laurie's can get published. Because people need to know, and she did a wonderful job of telling them.

She also threw a fan-tas-tic book signing, if I do say so: It may have been my first, but I found it impressive - packed and welcoming. Laurie and her family were exceptionally nice to me - I met her Dad, who had strict orders to keep to the back rows and busy himself with his camera, and who couldn't have been any prouder, I don't think. I didn't get to meet her husband John, but he waved to me as I was leaving, which I thought was nice. People I can only assume were her friends started up conversations with me, and let me sneak in the signing line when it had wrapped around to a place my chair wouldn't fit. And Laurie herself was just as nice in person as she is online... she answered questions honestly and with humor, wrote a sweet message in my copy of the book, and even invited me to a little party they were having after the signing. Which, unfortunately, I couldn't get to b/c it had already been quite a long day for me, and I was worn out, but I hope that she had a wonderful time, and that this won't be our only in-person meeting.

Laurie, congratulations on the book: it's fabulous, the signing was great, and I'm so glad to have met you!

Other peoples, particularly those of you who are interested/have no choice but to be interested in living with chronic illnesses: Buy Laurie's Book!

I hate electrical equipment...

and it seems to feel similarly towards me.

I bought my laptop - this laptop right here - three years ago. February of '05. Immediately after purchasing it, it did this thing were, if you moved it too quickly, it shut down. I thought, for a while, that laptops did that. A few months later, SisterJ purchased her laptop and I noticed "wow, you can move it without treating it like it is plutonium and it still works!" So I asked my HP people what was wrong with the puter and they said "Send it to us, it sounds broken." I did, and it was. The motherboard was 'compromised' and had to be replaced. That sucked, since it was a new laptop and then I was without it for a few weeks - about a month, I think.

About 6 months later, one of my 3 USB ports (the quickest one) stopped working. Just wouldn't even show up on my manage devices list. It kinda sucked, but I dealt with it. A few weeks later, another one stopped working. (To figure this out I had to buy a new cord for my printer, as I had assumed it was the cord that was broken. It wasn't.) Less than 3 months later, the final remaining USB port refused to show up. Nice. Went to the HP people again, and they were all "You must have done something, I wonder why that would happen if you didn't uninstall them" (As if I were purposely removing the posibility of my computer being able to communicate with other devices. "Send it to us," they said, acting as if I needed to be reported to Social Services for laptop abuse. I packed it up and sent it off AGAIN and it as gone for a month and a half. When it came back, they grudgingly admitted that the computer had done it on its own, acting out with the sort of antisocial behavior you expect from 3 year olds.

This year, as we have discussed, I had to send the pretty computer away because the fan was overheating and then full on stopped working. Again: not my fault; Again, at least 3 weeks with no laptop.

The same time I bought my laptop, I bought a printer with it - an Epson. It was an color, copier, printer, and it was free with rebate. I love free. I love rebates. I thought I was veeery lucky. Sometime between the first time I had to send the computer back and the second time I had to send it back, the printer stopped working. Totally. The ink cartridge had somehow leaked into the inside of the machine, and was producing large black splotches on ... everything. The printer refused to print anything, and then got to the point where it wouldn't even turn on anymore. Nice. So I called up Epson, and they were all "really? How'd that happen? Oh wait, that's a known issue with this model. Send it back to us and we'll send you a new one. A better one! You're a lucky lucky girl!"

Yes, I totally felt lucky, as I'm sure you can imagine.

That printer lasted about 2 years, until, last fall, right when my family troubles were exploding, it decided to start eating the paper. It would start to load a page to print out on, and instead of going through, it would crumple it up and then flash red lights at me. "error! error! Error!" it would yell. As if I couldn't tell from the whole gobbling up the paper thing. The warranty had, of course, expired by this point, and this would've been my 3rd try with the Epsons anyway, plus I had been thinking about getting an all in one that you can fax with (because of my timesheets for the PCA program that have to be in every two weeks and sending Mum to Staples every other Monday seemed pretty low on the list of priorities when you're dealing with famiy emergencies).

So to make things easier on myself (and everybody else), I went ahead and bought a brand new printer/copier/scanner/fax. It's a Canon, and I have loved it for all of the 5 months that I have been using it. It printed out SisterJ's save the dates, her wedding invitations, the games we played at the shower. I've completed about 25 of SisterCh's scrapbook pages on the thing, in the past week. It and I have copied a gazillion magazine pages, crochet directions, and recipes.

And then, there came today. When I tried to copy Youngest Nephew's Report Card (he did awesome, watch out 3rd Grade!), the printer started making this scary noise, lights started flashing, paper stopped rolling in. The piece of paper ripped somewhere inside the machine. And there, it got lost. A little piece of paper is sitting in there, making everything else NOT WORK. So I called Canon, and yippee, you guessed it "Please sent it to us, we'll send you a new one to replace it. There's no way you can fix it yourself."

UGH. Just Ugh. I mean, seriously, why do electronic things hate me so much? I am a good owner. I don't misuse them or eat food and drop it into them. I use that spray duster thing regularly, and I've only dropped my poor laptop once, and then, it was because I was dropping as well. (We haven't talked about that: it was the week leading up to the wedding, the computer and I took a tumble ... a serious tumble. My back was WAAY messed up and I was really glad you couldn't see it under my dress. And the puter was ok except for some dead pixels in the lower right corner. Which bothered me a lot at first, but now I realize all it means is that I have to look somewhere else to see what time it is. I think I can deal.) I am not cruel to things with plugs, but they must have heard horror stories, because there is some sort of computer/printer conspiracy when it comes to me.

So, if you have anything that needs copying, you - and I - will have to wait 7-10 days. Sorry about that.

Toddler Tango

Lil Girl has entered one of the most exciting and one of the most frustrating stages of toddlerhood: the why stage.

"Time for breakfast!" "Why?"

"Would you like to paint today? "Why?"

"Look, there's a tree." "Why?"

"Auntie is going to lose her mind today." "Why?"

And there's really no answer that will satisfy her, because it's not so much about the answer - most times she doesn't even wait for you to get through the first little bit of the answer before she asks "Why?" again - it's all about the question.

Sometimes the questions are valid, but that doesn't mean they don't get old quick - "We're going shopping today." "Why?" "Cuz you need some new shoes." "Why?" "Cuz your old shoes are falling apart and Auntie hates your new Crocs." "Why?" "Because they don't fit your feet right." "Why?" "Oh my sweet lord... Look honey, we're going for a ride in Grammy's car... Yay!" "Yay!"

Because I was trained in Early Childhood Ed, I know all the theories and stages and whatnot behind the 'why's, and I have more than a few tricks of the trade up my sleeves, but mostly, as with most things involving the under 5 set, you just have to give them something else to focus on before you resort to the dreaded "Because I SAID SO, that's why!"

But just when you think you'll lose the very last little bit of your patience, they do something so adorably cute that you just melt instead.

Lil Girl has that down pat. The other day instead of asking why, she started asking "Why cuz?" That little angelic face looks up at you and asks "Why cuz, Auntie?" and you just have to smile. She's a quick thinker, that one. (We think she realizes that if she asks why the answer is usually "cuz" so she squished them together: how smart is that??)

So I'm off to spend the majority of my day thinking up answers to the endless why cuzes... wish me luck!

A quiet house and a restless mind.

My parents have gone out with SisterJ & her husband for an early Father's Day dinner. The house is dark and quiet, still and peaceful. There's one small table light on in the dining room as darkness starts to settle in. It's the kind of night I would've been happy to have all to myself, even though I knew it wouldn't last.

A year ago, now would've been about the time that Nana would be making her way into my room, asking where everybody was. I would've put down my book and clicked the TV on to a Law & Order rerun or been searching through the menu for something vaguely acceptable for us to watch. She'd be full of conversation: having been ignored or abused upstairs all day, she'd chatter on ,relieved that there was someone who was finally listening, finally acknowledging her.

I would've turned the wheelchair when I heard the door close behind her, because if I left it sitting towards me, she'd sit with her neck turned sideways all night, apparently unable to remember that the chair has wheels and was therefore movable.

I would've rolled my eyes a million times by now, most likely over her inability to do the right thing in regards to the PUS, and ultimately, we would've changed the subject before either of us got too mad. We were the only company available for each other, after all. No sense pissing off the person you were going to be sitting next to all night.

So tonight, the quiet is bittersweet - I know she's not going to interrupt this blog post (because I think it's rude to type while people are trying to talk to you) or rant and rave about the latest atrocity those 'little bastards' had committed. I hear their heavy footfalls above me and think of how unfair it is that they are still here and she is not.

I think about how there are pictures of pictures of her at SisterJ's wedding, but no pictures of her, and how she would've laughed and cried and danced and clapped.

I think of how it's been nearly half a year without her, and how that seems both impossibly long and incredibly short at the same time.

I wonder about what the next six months will bring us, and close my eyes and hope that there'll be some peace - no matter how unlikely that seems.

And then I go back to the quiet and wish that I had treasured the interruptions more while I had them.

Randomosity

10 days is still not two weeks... and I forgot that they meant 'business days' when they said weeks... So I am still laptop-less - It was indeed the fan that had stopped working: it will indeed cost me about $200 to fix it. I have indeed paid them and am waiting oh so patiently to get it back. End of laptop update.

Medically, things are taking unexpected turns. Well, unexpected for anybody else... just normal "oh my sweet Jesus what now" turns for me. Yesterday's appointment with Zach included blood tests for West Nile Virus, an appointment to have the ENT use a 'vacuum like apparatus' on my sinuses (oh joy), and the discovery of some lymph node issues that, because Zach likes to use a totally different dictionary than the rest of the normal world, he called 'compelling and possibly key.' In English, though, they were potentially troubling spots that need to be followed up with yet another CT scan and a PET scan. So next week filled up with appointments rather quickly as well, which isn't exactly awesome because I've got other stuff that needs to get accomplished. But we do what we have to, I suppose.

Some of the other stuff I have to get accomplished this week include my last bridesmaid's dress fitting (Tuesday), actually coming up with something for the bachelorette party, probably a lot of cursing at the rest of the bridal party for not actually, you know... helping, and various other wedding related things. Also, the twins are being christened this Sunday, so there's that. And I needed to shop for something, but it's lost in the recesses of my mind at present. OH: and Thursday is Blogging Against Disabilism Day, and I have pledged a post. (And will have to make time to wander the rest of the posts in the days that follow). Then next Saturday is Youngest Nephew's First Communion, as well as his 8th birthday party. Yup: Starting Sunday, the train of days moves quickly for us here at NTE's house ~ in a echo to the clumping phenomenon of the fall & winter, May seems to be jam packed with things this year.

And they're all a little bittersweet, each new milestone or happy occasion that we're observing without Nana. It's tough, but we're hanging in. I'm hanging in. Yesterday's appointment with Zach was difficult, because it was the first time we'd been back to the office since she'd died, and everyone wanted to pass along their condolences, to talk about how nice she was to them, or how much they appreciated my letters after her death. I found myself having to look away from people's eyes, to keep myself from crying. It's been a couple of weeks (since the shower) since I had to do that, which I suppose is a good sign. I just know these next few weeks will be tough, a bunch of firsts and familiars, and yet they'll all be different this time. Hmmm... not what we expected.

But life never is, is it?

So: that's a post chock full of information & random topics... to make up for the past few weeks of nearly nothing. And, if you're lucky, I'll post some pictures later, show you some of the stuff we've been working on for the wedding.

Happy Thursday, all... Miss you!

Monkeys? Hop on! Ducks? Screw that!

Some stuff came up this week, and the niece of transparency (thank you all for the shutter speed explanations, that's what I was guessing it was too!) wound up having to spend all the days (and a few of the nights) with us.

And, as I am still (41 days later!) hiding out on the couch in my living room, the pain, it is not so much the manageable all the time.
Needless to say, this has cut into my blogging time. But now I am recuperating a bit, and I thought I'd share this IM between me and Sister K, who stopped over to play for an hour or so on Wednesday, during her spring break.

Sister K [10:48 PM]: is tonight the night Lil Girl is sleeping over?
NTE [10:49 PM]: yesh. she is asleep, who knows how long it'll last, but right this second, she's asleep
Sister K [10:50 PM]: :)
SisterK [10:50 PM]: was she good today like yesterday?
NTE [10:51 PM]: she's such a good girl - like 98% of the time. No meltdowns today, just a couple of whininess-ish times
SisterK [10:52 PM]: :) i told everyone who would listen to me about playing play-do and carebears
NTE [10:52 PM]: yeah, we do a lot of that. Every single day.
Sister K [10:53 PM]: i like how she all of a sudden goes, 'WOWWWWWWWW'
NTE [10:54 PM]: today, on the way home, we sang the wheels on the bus. FOREVER. there were dogs, cats, monkeys... all on the bus
NTE [10:54 PM]: trying to keep her awake long enough to drive home was a bit of a challenge
Sister K [10:54 PM]: hahaha
Sister K[10:55 PM]: monkeys on the busss nice
NTE [10:56 PM]: hey: we do what we have to. i was trying to put ducks on the bus and she goes "noooooooooooo" Like "what are you thinking woman?? Ducks? On a bus?? You are crazy!" But monkeys? Sure... hop on!
Sister K[10:56 PM]: hahaha <3

So, just in case you were wondering: No ducks on the bus. Happy Friday, everybody. Thank God it's here.

I know there are times that I have felt less like posting, but I must be blocking them out, because they were so horrid.

In point of fact, I have missed you all, but when you have the walking pneumonia, the tonsils the size of baby turtles, the sinus infection that will. not. die. And you add all of those things onto the fact that I was in exile because of the PUS and therefore not at least miserable and at home, well, you might say that I just didn't quite get around to saying all the things I've had to say.

Or, that I said them, but because they were covered in mucus, I thought it best not to share them with all of you.

You're welcome.

I am much improved (well, much improved for me anyways), and my nearly three weeks of exile has come to a semi-end. I am home again, just stuck in our own parlor, as the painting that was supposed to take place on the porch (above and behind my bedroom) actually wound up taking place in the hallway (directly above my bedroom) and my room still smells like paint.

You can just imagine, I am sure, the cheery, happy, mucus-covered thoughts I have been directing towards the PUS. Ahhh... if only thoughts could kill. Or maim. I'd settle for maiming.

Our couch, at the very least, is in closer proximity to my millions of lists of things that still need to get done. Not that I am really accomplishing any of them (certain blog friends who have birthdays this week may want to wait awhile before checking the mail for their cards, for example), but I'm physically closer to them, and that's a start.

Isn't it?

Meanwhile, I have been catching up with all of you... and if any of you are catching up here: Hallo! It is the middle of March! Already! And there's a wedding shower I'm supposed to throw in three weeks! Would you kindly tell me why nobody knows what RSVP means anymore????

Wasn't that a nice welcome back?

:)

Last week

I had to pick up some prescriptions, and went on the search for the least smelly dandruff shampoo I could find. (My scalp is out of control, people. But I can't use those tar things they used to tell me to use, because of the smells... it's a pickle.)

Anyways... I came across this:




Yes, that's right: anti-sponge shampoo. I honestly could not figure out what they heck they were talking about, and since the back of the bottle was in spanish, I was left totally confused.

The website says it's to combat hair that 'absorbs water and magnifies in size'... So... poofy? Poofy hair is what we're working against here? Except they also have an Anti Poof shampoo, so it must be different somehow. And they also have a volumizing shampoo. So there's sponges, bad poof and good poof.

No wonder I don't get this kind of stuff...

I just want to say a couple of things

Most of those things sound an awful lot like this: Sorry I'm not here so much.

Because I miss it, the outlet, and all of you. And, even though I said it last time, I'm really hoping to be able to recommit to posting here.

I am at my Grandmother's house: enjoying long days of chit chatting & showing of baby pictures, of extra loud news programs & stories I've never heard. Although I am pissed at the PUS because they continue to be insensitive asses, before I left the house I made some decisions:

1) I knew I was going to have to leave (their reassurance that there would be no smells is about as worthwhile to me as something else that smells really bad), and I still don't know if it was for good. And that's sad. If I'm all done living there, I'm all done living there, but it's still sad. Right now, I doubt that it will be permanent, just because there's other things abrewing, but I'll deal if it is. I will.

2) I love my Grandmother: I love spending time with her, even if she repeats her stories or tries to make my uncle give me help that I don't need. I always learn something new about somebody in our family, some nugget of treasure she's forgotten to pass along to me. We look at old albums and point out the guy who came to the reunion that nobody knew, or great-grandfather Gerry and how he walked dink toed, just like me (you know, back when I used to walk). I often feel upset that so many of my Grandmother's children are so far away: for her, and for them. Look what they're missing out on. Every time we get into a discussion, I have to physically resist reaching into my bag and pulling out my camera, turning it to record, and hiding it between the pillows. And I only resist because last time I did that she caught me, and was not pleased. A displeased Grandmother is not a fun time for anyone. So, even though the reason behind my visit is aggravating and frustrating, I decided before I left that I would enjoy it. The additional pain (from laying on her old lumpy couches all day and night), the new smells to get used to, the rashes from her soaps... that's all bearable because I'm more aware than ever that someday, probably soon, she won't be here for me to listen to, won't be here to repeat to me something she heard on the news (even though I was in the room, watching the news with her, and it was just 15 minutes ago). So, today I'll hold our visit close, watch the way she laughs at Lil Girl, the way her eyes crinkle up when she talks about her mother's death (when she was almost 6, so 84 years ago now) and what she was wearing in her coffin. I'm trying to memorize every little thing, because I feel so lucky to still have her here.

3) When I left Thursday morning, it was after the movers came to take Nana's things to storage. That was very difficult, for me and for mum. Because it was like seeing pieces of your childhood, only in the entirely wrong context. Nana's dollhouse didn't belong in a truck, all emptied out and furniture free... It had a place of honor, and was impeccably decorated. The ceramic people (including an older woman in a maid's outfit that we called Nana) should be lined up and waiting: Mother, Father, twin boys dressed in knickers, twin girls in red dresses. Those weird post thingees that I couldn't place were the ends of the dining room table, all pulled apart. Looking at the holes we used to crawl through, endlessly aggravating whichever adults happened to be sitting there, it felt like I had fallen through a hole myself: I was Alice, but instead of a wonderland, I was stuck here.
In tears. I'd prefer the Cheshire cat, I think.

4) There are good things, good and strong and exciting things that are trying to happen in our lives, and I'm trying to be strong enough to let them happen, to make them happen. Wedding showers and christenings, Lil Girl learning to count, Youngest Nephew's first viewing of Indiana Jones. Simple things and extravagant things, and just... other things. And it's hard to be in a place where I can deal with those things, but I know it'll get easier everyday, even though it feels like it won't.

This blog is one of those things.

Getting back to reading and writing and scrapping and the merry go round of medicine: all of those things need to happen, and I'm trying. I really, really am. And other things need to be let go, and I'm trying there too. The PUS, someday soon, are going to drift out of my orbit (or, preferably, be exploded out of my orbit, like that rogue satellite), and they won't be influencing my days any more. I look forward to that eventuality. Sincerely. But, just like I can't sit and wait to get better and do nothing about helping to get there, I've gotta be open to the next steps for getting them gone. So that means I'll be here for now, and they'll be there, and if never the twain shall meet again, that'd be a-ok with me.

(PS - odor free? Means that it smells so badly they moved into a hotel room for the weekend, and Mum, Dad & SisterCh all have headaches from it downstairs. With doors and windows open, in the middle of a snowstorm. Good call. Again.)

So, I'll be spending my day tomorrow (wait, today, as it's 1:14 am), gabbing with Grandmother. Looking at the snow covered streets out the window. Wishing that things were different, but trying to appreciate what is. Thanks for sticking around.

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?)

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.