Oh, the moods I've been in

It's been a long tiring week, while my body does it's vicious dance with the germs that want to take up residence permanently. Aside from a fever that just wouldn't quit, my brain just couldn't stay connected to reality for more than, let's say 7 minutes at a time. If this week had had a theme it would've been something akin to "ugh."

So, I'm glad that it's over. I've declared that it's over, and my body is just going to follow along cuz I told it to (hahahahaha). Either way, I'm sick of thinking about it. So, how about some of the pictures I promised you instead?

I'm going to start with some really cool shots of the rehearsal dinner, b/c I'm organized like that. :D

This is our very gorgeous church: I honestly can't imagine getting married anywhere but here. In addition to being our childhood church, it's just really picturesque, so we kinda lucked out there.





Here's Dad, Lil Girl, Oldest Nephew, SisterS and SisterJ - The Bride on their way to get things started:


SisterJ & Dad practice their walk down the aisle (no tears for faux-wedding days!)


Here's the 3 loves of my heart: Oldest Nephew, Youngest Nephew & Lil Girl, all on their bestest behavior!


And the Happy Couple stops to pose on their way out of church.



The rehearsal at the church went quickly, we had kind of an annoying lady running us through it (she kept saying how in charge she was, but she really wasn't). SisterJ was feeling a little bit of anxiety, b/c the church people had screwed up some of the paperwork, but it went pretty well.

I'm going to stop by again later and show you all the rehearsal dinner highlights, keep my mind busy on something else for a while.

Well, Long Time No See

Here I am... alive and... well, not well, but alive! So that's always a plus!

Actually I am much improved: A very short story version of the time that has passed since I was here last is this: The wedding was fantastic, wonderful, fabulous, stressful, awesome, beautiful, powerful, great, and I am thoroughly embracing my role in the creation and enabling of that day and the real blessing that it was. I am also a big fat idiot. Because, as usual, I am unable to not just see the warning signals that my body is sending me, but also HEED them.

The intensity of the past, oh 8 months, combined with the hard push of the last let's say 5 weeks (Christening, 1st Communion, Shower, Bachelorette party, Rehearsal Dinner, Wedding plus planning and crafty times): Honestly, there were times in there that I was really congratulating myself on how far I had come, in the past three years or so, in order to be able to accomplish all that. And then there were other times when I knew I was going way to far and should have put the brakes on.

Like when I couldn't shake this stupid sinus infection that I've had since January. Oh, it went into hiding for a week or two here and there, but it hasn't been killed yet. It just decided to be sly for a bit, try to fool me.

Or the fact that I've had a rash since November that should've been cleared up with a few applications of a certain medicine. That's still here 9 months and 4 tubes of medication later.

Or the migraines that have been more frequent, or the fact that my pain level, even on the medication that slightly helps, was bumping up a notch or two from normal.

The sad part is that, for the most part, I expect to pay these prices: higher pain for more activities, less energy because I've used it all up, more headaches because I'm out in the world around all of the smells and sounds that cause the headaches. These are the consequences I am used to, ready for, and willing to put up with in order to do the things that are important to me. It's just a part of living with chronic illnesses that you have to accept: if you want to do things, you have to pay the price.

Well, the price was slightly higher this week than I had expected to pay, as I manged to downplay a pretty serious infection for the better part of a week, thinking it was just a typical post-party flare up. Flare up of pain, an increase in fevers, a sore throat that wouldn't quit. And, that's how I wound up in Urgent Care on Friday, and barely talked my way out of being hospitalized.

Because I just can't read my own body: It lies. Everything it tells me is misleading, and it's impossible to form conclusions based on past experiences.

Flare up of pain & exhaustion: yes, totally expected after all the heavy duty excursions in the past month. Dialing the pain up from a 8 to a 12... not exactly what I'd hoped for, but still: not totally unexpected. (And so, another warning sign missed.) Because...

Higher than normal temps: Also expected - inflammation makes my temps higher and my pain worse. PLUS I was around all those people, and all those people were kind enough to share their germs with me and my 'can't fight off invader cells' immune system was trying to work overtime to help me out. Not unexpected either (and yet... you've got an abnormally low temperature, normally... so if the thermometer is reading over 100 degrees... you're kind of in trouble. Stop pretending that you're not... that's like 102 for normal people)...

And a sore throat? Run of the mill, for me. Can't remember a pain free day, or a soothed throat, anymore. 14 years later, it's hard to recall that there used to be times you could wake up and not have to think about all the reasons you should keep on going in spite of how much it hurts. (But wait... do you realize that you're wheezing? More than a little? And that you have been unable to swallow food for like.. days now? Soup broth ain't cutting it, sister... Call the doctor)

And so I did, as my fever climbed higher and my tonsils decided to once again meet in the middle (I am an evil spirit, apparently, keeping those two destined soul-mates from their true loves) and my pain became so great that I was forced to wish it was just a normal 8 or 9 day for me. And guess what: Surprise surprise, I have a huge freaking infection! In my tonsils! And my chest! And my sinuses! And am seriously dehydrated! And dangerously feverish! Fabulous! And also... insane for having waited this long.

But here's the thing: when you're expecting to suffer, it's hard to know when you've crossed the line. At least for me. Suffering is part of my world, I keep it tabulated in my everyday columns: trying to figure out a balance I can live with. So when something like this happens, it's hard to say "oh, well... this is more than I thought it would be, it could be something different." Because the prices? They're subject to change without warning or notification, and this is certainly not the first time I've had to pay more than my fair share.

But I am doing MUCH better now: got myself hooked up to some strong antibiotics and fabulous drugs (ok, not fabulous drugs - steroids and lidocaine for my throat, which don't exactly suck, and some opioid for the pain which are laughingly slight, but I'll take what I can get) and the thermometer no longer does that obnoxious "You're on fire" beeping, as evidenced by the fact that I can string words together in fairly cohesive sentences (mostly). (I'm even back under normal: take that stupid germs!) My tonsils are still doing their best impression of Siamese twins, but we're working on that.

And still? If I knew then what I know now: that I'd have to pay this price in order to be there for my family at all those important times? I'd do the same thing, I suppose. (Although maybe a little bit smarter next time? Hopefully? Please???)

So, that's the long story (supposedly made short), and I'll end just by saying that the wedding was really wonderful and I had a great time, and I'm going to get pictures posted here ASAP. Because I refuse to think about my tonsils anymore, and because I want to share the happiness with all of you. (Or... anybody that's still here anyways - blog posts were definitely one of the first victims in the "I have absolutely no more energy for anything extra" run up to the wedding. But I'm hoping to have more to say and things to share for a while now. Yay!)

Wedding planning + bronchitis = not fun

We're getting down to the wire here as far as SisterJ's wedding: it's on Saturday. As in THIS Saturday, as in 4 days from today. There are still a ton of things that need to get done, and I'm funnelling my energies (hahahaha - as if there are singular, let alone multiple energies) towards that & getting better (ish) by then, for now. I'm going to try to pop in with some of the details so y'all can see what's cooking, but we'll see how that goes. In the meantime, would you believe me if I told you that I spent part of my Saturday with Hard Times Barbie?



The Bachelorette Party was ... interesting, to say the least.

Be back soon!

Who're we quoting? (BADD edition)

Alright guys, I'm about halfway through the BADD posts, and they are sooo excellent!! I mean, just mind-blowingly amazing pieces about the political, the personal, the polite, the rude, the ramps, the wrongs and rights, the feelings and the future. I thought I'd give you a glimpse, if you didn't have hours of time to devote today, although I'd go back to Goldfish's place and just start wandering if you had a few minutes. Here are some of the highlights I've found so far: This post by Hoyden About Town, who talks a lot about the political ramifications of disability, good crip vs bad crip, and "shiny happy super powers:" What more could you want? But the reality is, people with disabilities are far more varied and complicated, not a collection of conveniently-cliched characters in morality plays and Hallmark specials. Some of us have carer responsibilities ourselves. And hobbies. And political ideas. And social lives. We are not potplants, pets, malingerers, inspirations, handfuls, beds, wheelchairs, freakshows, mascots, superheroes, or angels. Just people. With lives that aren’t reducible to being an economic unit or someone else’s encumbrance. From the comment section of Missnomered's BADD post, Amanda's comment about CFIDS and how people are always volunteering cures: It seems as if you’re supposed to devote your entire life to “getting better,” and nothing to just living your life. If you try to just live your life, then that is oddly enough called “giving up”. A fabulous line from Cripchik's ... I'm going to call it a call to arms: Life happens to be of higher quality, you know, when you can actually do things like breathe. Then there's this post about Stereotype Threat, and the self fulfilling prophecy, a notion which I find both unendingly complicated and frighteningly simple, but ends with this wonderful tidbit: Activism--feminism, anti-racism, anti-classism, and most relevantly anti-disablism--by challenging stereotypes actually makes them less true. Isn't that brilliant? Doesn't that give you hope? There were a ton of CFIDS/ME/FM illness related posts, (that I've read so far), which is a hard thing to swallow. It's sad, on the one hand to know that there are so many of us out there suffering, and on the other? It's so heartening to know that there are people who understand. Like this line from tigertale7, who's experiences with doctors are eerily familiar... Chances are, if you're only seeing me every several weeks or longer? You're not seeing the reality of my illness. And then there's JayAngel's post... with a fabulous description of healthy privilege, and how you can have it and not even know (Don't worry, I used to be the same way.)& what it means in your interactions with People with Disabilities... When you get sick, and you feel crappy and people expect you to function normally and you can’t and you’re grumpy and you feel awful, you know you’ll get better, and you get treated or wait the cold out and then you feel okay again. I don’t get to do that, I don’t get to know that. Healthy people don’t have to fight for every ounce of energy they have. And that comes across, all the time, when you have no idea it does. And all I want from you, those with healthy privilege, is to see and acknowledge that there are disabled people in this world, and you can’t expect them to be able to do everything you can do at the drop of a hat. Don’t come upon the words “I can’t come out tonight” and hear “I don’t want to come out with you”. Hear what is being said, which is “I don’t have the energy to do all of the activity needed to come out tonight”. If a doctor is told by a patient that they are bedbound and need a home visit, I would like that doctor to hear “I am bedbound and wish to be cooperative and get treatment; I am asking you for help” instead of “I just need to be encouraged to make the requisite effort”. If you go to a friend’s house and their sister’s friend, who has CFS, is lying exhausted on the couch and declines the offer of joining everyone else on a walk, please try to hear what is being said, “I am ill and exhausted, but appreciate being included in the offer”, rather than hearing “I’m too lazy to go for a walk, I’d rather lie here”. ...And I'm in danger of copying her whole post... just go over there and check it out, will you? I'm taking them as I can, so we may be back with even more fabulousness, as I get to them. Happy Sunday, all.

A BADD Post for you

Hi Everybody ~ Welcome to Blogging Against Disabilism Day! I had a heck of time deciding what I was going to write about today, so I did what I usually do when faced with a decision I don't want to make: I procrastinated. I tidied up my piles a bit, brushed my teeth again, started to balance my checkbook. And as I was adding in today's SSDI payment, I remembered all the journal entries I had written about applying for SSDI and what it felt like, to me. I don't talk about money too much here at NTE,(except for the fact that I don't have any) but money and disability - specifically poverty and disability - are intricately linked. In the United States, and around the world, individuals with disabilities are more likely to live in poverty, and according to the World Bank, in third world countries, they make up a disproportionate segment of the "grindingly poor."

I am fortunate enough that these are not my circumstances: I am not among those living in poverty. I have benefits above and beyond what many of those with disabilities can expect in their own lives - I live in the US were I can count on some measure of support from my government - in the form of reduced cost/free medical care and the money I get from SSDI (at least for now, we'll see what November brings). But even that is not enough for me to live independently - were it not for my parents, I would have to make the choice every month between food and shelter, not to mention medications, clothing and other necessities of life. There are housing programs in my area, but they are troubled with the same burdens of all other social services programs: long waiting lists, a one-size-fits-all mentality (which almost never fit me), and lack of funding. Either way, without my parents, making it, financially, would be extremely difficult. It's a constant worry, even with them, but I have this cushion here, which allows me to afford things like Internet (yay!) to make my life more comfortable.

But the choice to apply for SSDI, and then following through the long and difficult process is something that most people don't really think about. So I've dug through my journals and come up with two entries on the subject... the first is from August of 2003, when I applied (for the 3rd time) for SSDI, and was feeling, well, you'll see how many different things I was feeling about it:

Nobody ever says "this is what it is like to be 24 and applying for Social Security." well, this is what it's like.

It's like you've failed. Like you're never going to be able to be more - do more - than you are right now. As if all the dreams and goals you have for yourself are as far out of reach as Mercury - and always will be.

It's embarrassing - to have a Master's Degree - to have earned a Master's Degree - and still be incapable of using it. To be filling out form after form after form where you have to clearly and concisely list all of your inadequacies, even the ones you avoid acknowledging to yourself. To say "Yes, I had wanted to be a teacher, responsible for the care and cultivation of young minds, hearts, souls and bodies, but right now I can't even be left alone to get to the bathroom." To be forced to admit - particularly to yourself - just how bad it really is: how many days a week you can't get out of bed, how many times a day you require help, how you can't lift over 5 pounds, how you can't tie your own shoe some days.

It's frustrating. Especially with such a load of 'controversial' diagnoses (CFIDS/FM/etc) to think that after I've bared my worst secrets and groveled for money I'd much rather be busy earning, that they might not believe me, or think that I've exaggerated, or turn me down - again. As if I had no interest in doing more than lying here, pretending to live. As if my sole goal in life was to get other people to support me - so I could live at home with my parents forever, and spend my time watching Law and Order re-runs on TV.

It's like saying "I give up." And this is the hardest one to swallow. Because I don't give up. What I'm really trying to say is "I just can't do it right now, and I need your help," but that's not what it feels like I'm saying. It feels like I did give up, and now have to beg for enough money to live.

It feels helpless, powerless... to wait until some faceless and medically ignorant bureaucrat decides whether or not I'm sick enough to deserve help. I have applied for SSDI twice already, and each time I was denied. A part of me, a not so small part, rejoiced when they said no, although I needed the money and was totally unable to work, because it meant that I wasn't sick enough - I wasn't the hopeless & forever kind of sick.

It feels futile - to know how much of life I am missing out on, and to be unable to do anything about it. What do you do after your doctor - and every other available, knowledgeable doctor - says "we just don't know what else to do... we can't really help you yet." I know that some people lead crusades to help themselves, or the ones they love. I admire them, I do, but I don't have that strength. I just don't. For me, each day is a battle - from breathing, to sleeping, even eating - every.single.thing. is a challenge right now. I honestly can not remember a pain free day - my last pain free day... I don't know when it was. So that's the only battle I'm up to fighting right now - I wish it wasn't. But it is.

It's more of just living in 'until'. Maybe even the ultimate step of living in 'until' because I've made it official: "Until I can care for myself, do for myself, earn for myself, I need this help. I need this money. To live. To be. Please Help."

It's sad.
It's scary.
It's yet another aspect of being ill that I would have rather passed on by, thank you very much.

But right now? It's also necessary - for my survival, for my sanity, for me. So I'm doing it, again, and I'll hope for the best (even if I'll be praying that by the time they decide, I won't need it anymore.)

The second is from January of 2004, when I received my first check (including the back money from when I'd first applied), and you'll see that my feelings about the money are still pretty complicated:

Got my first SSI check today: $3000! The most money I've ever had in my whole life. I've been vacillating all day between being upset and being happy. First I think, "All of this money, and I did nothing to earn it!" Then I think "Hell yes, I earned it: nine years of dealing with a life altering disease. All consuming chronic pain, dozens of doctors and diseases with no names or treatments; all the complications that nobody expected or could explain, all the symptoms that interfere with my every day, my every hope or ambition or dream." So did I earn it? I suspect I did. But it still doesn't feel good, the way I expect a paycheck would feel: Earned free and clear, through doing the job you love (or hate, as the case may be). A good day's pay for a good day's work. Plus, it feels so final, as if there is little hope for change or improvement.

I just don't know what or how to feel. It's very confusing.

I do need the money: even though I'm living at home, off my parents, basically, I need to be able to contribute something. And still, I'm too sick to take this money and actually do anything with it. Even if I have earned it, I can't just spend it: I'm too sick to shop, even. *This is obviously before I got my laptop and a debit card.* This day is just too conflicting... I don't know what to think.

What are my thoughts today, four years later and unfortunately still on SSDI? Still pretty conflicted.

In some ways, it's a lot easier now than it was then: I've since done a lot of thinking about the responsibilities of the government towards it's people and the need for social services, etc. I don't have a lot of questions about whether or not I 'deserve' the money - I pretty much figure I don't 'deserve' my illness either, but if I'm stuck with that, I should ask for the help I need if it's available. I've gotten to the point where I don't always feel as helpless/powerless with my situation, because I have doctors who work with me and friends who listen when I've feeling overwhelmed.

But I'm still sad and upset that I'm not doing what I want to be doing with my life, that it's just not possible to be working (or having a family or traveling or any of the millions of other things I want to do that require more than I have to give). That's not something that goes away. I don't think it should go away, personally, because that would be like giving up: I've adjusted a lot of my dreams to fit me for now: watching the children in my family, helping to care for them as they grow or writing for websites and on this blog because it's something I can do that keeps me connected to my dreams as well as the rest of the world. I may still be living in 'until...', but I've made 'until...' fit me as best as I can.


Anyways, that seems like a very long post, not just about money, but about all of the feelings that come along with asking your government for financial help. I don't know what other peoples' experiences are, but this is is how it felt for me, to be 24 years old and to realize I wasn't going to make it without some financial help. I was lucky enough that it was available to me, I realize now, and the past few years would've been a lot tougher without it. So for today, I'll be grateful, even if I'd still rather be working. I'd still rather be earning my money at a job I love, feeling like I was doing more than making it through the day.

And now I'd like to direct you to the hub of BADD, Diary of A Goldfish, where there's a zillion and one more posts about a zillion and one more topics, all related, in some way to disability. Even if you can't get through them all today (yeah... I tried that last year... it did not work out), bookmark the page and get to them as you can: I know I will be.

Thanks for reading! Happy May Day all!

A nice book meme to start the day/week

The folks at The Collective have had a pretty amazing week of book blogging (I'm catching up! And now can post a comment! Yay!), and I thought I'd play along. Feel free to play too.

1) What book are you reading right now? I am reading about 4 different things right now, but the one closest to me is Helping Your Kids Cope with Divorce the Sandcastles Way. (It's a long story.)

2) What is the fourth sentence on page 133 of that book? "Observant parents can glean a great deal about what their children are thinking and feeling by observing the products of their imaginiation: the artwork, stories, and essays they write for school or for entertainment (see Chapter 2)."

3) What is one book that changed your life? It by Stephen King. I read it when I was 10, going on 11. The main characters of the book (at the beginning) are all in the summer of their 11th year. They were just normal kids, scared shitless by some demonic thing that lived in their town. But they beat it (spoiler alert). Those kids had power and that summer? I had it too. There are others, but that one, that made me see how awesome words and stories really could be.

4) What is one book that you read again and again? I read a lot of books over and over. My room looks like a library. Seriously. I re-read my Nora Roberts books regularly: they're my comfort reads. My next re-read needs to be the last Harry Potter book, though, because I was too upset by the whole end.finality.over-ness of it the first time to actually absorb all the little things.

5) What three books would you want on a desert island? This book turns into a raft; What to do on a raft while you are waiting for rescue and Good Poems for Every Day by Garrison Kellior (well, he put it together anyways... thankfully they are not his poems: I do not get him.)

6) What is the funniest book you've ever read? The funniest? Oh crap, that'd depend on my mood, but the one I remember laughing at most, at least in recent years is America: the Book by Jon Stewart.

7) What book made you cry the most? I also cry pretty easily, but I would say that I bawled the most when I opened up whatever book was next in the Little House series and read the words "Mary was blind." Mary may have been blind, but I was blindsided - She was perfectly fine when I left her 5 minutes ago at the end of the other book!!! Are you kidding me?? What the hell is scarlet fever? And couldn't you have broken the news a little more gently??? I cried so hard my mom came in from the other room and made me calm down before I threw up. I was probably 7 years old.

8. What book do you wish had been written? Exactly what is wrong with NTE and how we fixed it so easily circa 1995.

9) What would be the title of your autobiography? Well I suppose it would have to be the sequel to number 8, but I'm not sure what the title would be yet.

10) What book do you keep meaning to read? The Painted Bird I told someone I had read this, and then sat there nodding along as they talked about plot points, because I realized about 3 seconds into the conversation that I had NOT in fact read that book. (I had read something with a similar title.) And I felt so stupid that I immediately got the book... but I haven't read it yet.

11) What five books should everyone be required to read?
Escaping into the Open by Elizabeth Berg
Harry Potter and... pick your favorite title by J.K. Rowling
All in my Head by Paula Kamen
Key of Knowledge by Nora Roberts
How to Get Your Child to Love Reading by Esma Raji Codel

12) What book was the biggest waste of your time? There's a lot of sucky books out there, but I'd have to say the one I would've thrown against the wall, if it had been an option, was Ethan Frome. Oh my sweet lord, this was a depressing book: my entire impression of the book is this (even after an entire semester spend studying Edith Wharton and her cronies) - It is cold. And snowing. And sad. And bleak. I have a limp. Now I walk in the snow some more, where it will be cold. The end.

13) What was your favorite book as a child? I'm going to go with the first book I remember being a favorite, and that is The Monster at the End of this Book by I have no idea, but staring lovable, furry old Grover. I thought this book was hysterical (and it's a big hit now with my nephews and niece), and it was the first book I remember reading all by myself.

14) What book have you read the most? Good Night Moon by Margaret Wise Brown. I have that down pat... If it were the time of Alice in Wonderland, I would have a recitation ready to go, at a moment's notice. As it is, my brother will literally call me and say "Read her the book" which I will then do, free of charge.

15) Is there any book's ending that you would like to rewrite? Hmm... I know there have been books that have totally pissed me off, but I can't remember them right now.

"No Grammy!"

"No Grammy!"
Originally uploaded by bbackprple

Sister Ch taught Lil Girl to guilt trip Mum whenever she goes outside for a cigarette... Here she waits patiently for her to come back in, to scold her some more.

Look where I am!

Oh, wait: you can't see...

So I'll just tell you... I'm on my laptop! MY laptop. With all my saved passwords, and pictures, and slow moving connections! Yay!

Aren't you excited? Don't you think it was worth an $80 fan (and almost twice that in labor) to get it back???

Well I do: I missed it. And I missed you!

And because I did ... how about some pictures?

I thought you'd like that....

I'm off to Flickr-ize, and then I'll post some here.

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!

TWO weeks???

Well I took the laptop to the Geek Squad today, and they kept it. I was very sad to let it go (AGAIN!!), but hopefully, it will be a quick repair and then they'll send it back to me all working and spiffy. Since the fan had stopped running at all, I decided all my software improvements (updating the BIOS, for example) were for naught, and brought it to some people who might actually know what they are doing. BUT they said it'd cost money (duh~ of course my warranty expired again in January!) and that it may take 2 weeks to a month (to unscrew the little screws, take out the fan and put in a new fan? Who knows...) So I am stuck trying to finagle some time on the home computer, which means sitting up and all, which I am not particularly good at (something about this posture makes my neck and back start hurting even more quickly), so posting may be scarce. Like it already has been for the past two weeks, when I was hoping for some sort of fan-revival miracle. BUT I do appreciate you all checking in, and I will check in as I can... I may even resort to physically writing out posts and then typing them up, because when I am computer less, I think of a million things to talk about. So, we'll see how it goes.

In other news, yes: the shower was demanding and exhausting, but it was also fun. The wedding is 33 days from today, so all of the last minute type stuff is rushing at us. Like: Finding a bra. Hello? Large chested person? Get a bra that actually fits, will you??? That's Wednesday's mission... I'd rather refuse to accept that particular mission, but we do what we must.

I have my first appt with Zach since Nana died next week (it got rescheduled twice: once by me, once by him), and I'm feeling a little awkward. I'm mostly doing ok with the whole thing, but wonder if seeing him might be a little teary... for me or for mom. Nothing for it though, because I definitely need some better pain management going here... all these extra tasks I'm trying to fit in, and my body is complaining loudly. I had two 10 days last week... it is not something I need to be repeating, that's for sure. Although it did make me realize it's been a while since I've had a five or a six day. Mostly I'm living at 7-9, and that's not a great place to be, I assure you. (Sorry, re-reading that that may make no sense to you: on a 1-10 scale, ten being the highest, rate your pain. That's how the docs always do their evaluations.)

So... recap: laptop-less, but not totally computer-less. Wedding stuff is progressing, and there's a bunch of details to follow through on. Love you guys, and will try to write as often as possible. Pain sucks. The end.

Hello My Lovelies!

Laptop is still being uncooperative, but I managed to get back here again, so I thought I'd check in.

I wanted to tell you how the shower went last Saturday, in case you were waiting with baited breath.

Honestly? It went rather well... my co-hostesses were a bit lax in the whole "you have to introduce yourself to people" arena, but other than that, and a mini-post crash, I think things went awesome.

SisterJ and her fiance seemed a little bit surprised (although I'm not entirely sure they were), and most importantly, everybody had fun. So that's good.

How about some photographic proof of said fun? I thought you might like that...

Here we are in the car... I'm taking pictures because we're running late. AGAIN. And I'm trying not to go crazy. (I am an early bird, in a family of never-on-time-s.) That's Sister Y, Oldest Nephew, & Sister Ch...



Lil Girl, hiding for the chance to say 'surprise;'

Here are the soon to be Mr. & Mrs. playing a who knows who best game:

Can you guess who's winning?




Then there were some presents:





We did cake smooshing, because Sister J is VERY MUCH OPPOSED to doing it at the wedding...




Which turns out to be a good thing.


There's a few more still to come, but overall, I thought it went really well! (Note to self, however: if you're planning on playing games, bring pencils. Don't leave them on your desk.)

(You can click on over to my Flickr Stream to see more: if we're not friends, let's be!)

Sorry to have disappeared

Hopefully it's a temporary break, but my laptop is ... broken? I don't know what it is ... depressed? It's not working, that's for sure. And I'm recovering from the shower this weekend (it went really well! Yay!) but I had a few minutes, and my parents' computer was free, so here I am to tell you I am missing you all... again... and am going to drag my butt to best buy tomorrow if it kills me. NEED COMPUTER. NOW.

Anyways... Will update ASAP. Love, Me

I don't think it fits

Here's My Best Shot Monday shot: Youngest Nephew tries on his dad's 1st Communion suit... it's a tad bit small. But I couldn't resist taking the shot anyways... he's too cute!

I don't think it fits
Originally uploaded by bbackprple

Now I'm off to check out all the other Shots... Happy week, everybody.

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.

My Transparent Niece

I know everybody's going to have their Easter pix up today, but my camera is in another room, and the card with the pictures on it is in it. (Imagine that!) I'll try to get a few of those up later in the week. I hope everybody had a wonderful weekend, no matter how they spent it.

In the meantime, take a gander at this one:

My Transparent Niece
Originally uploaded by bbackprple

I promise you that this is straight out of the camera. I have no idea how it happened: I was playing with F-stops and exposures and .. well, everything, but I was quite surprised to see the resulting photo. Any of you photographically inclined people got any ideas on how this happened? Anyways, it's My Best Shot Monday!

Everyworry

I nearly just put down the computer and headed towards the kitchen for unnecessary food... (When you have no appetite, you often have to remind yourself to eat at all, but when I'm stressed, I eat no matter that I'm not hungry.) But I've been talking to myself for the past hour about facing my fears instead of distracting myself from them. And so, here I am.

This is one of those times that I'm going to write this whole long (or short) post, get finished, and then have to make the decision whether or not it just goes in the draft folder. Or if I am brave enough to push the post button.

I want you to know that I've appreciated your kindness, your generosity, the fact that you keep coming back to read, to say 'hey,' to check in when most of what you're getting is maudlin and dreary. And most of us are feeling enough of the maudlin and dreary on our own lately, and don't especially need extra. I know that feeling: I've been guilty of clicking on a blog I love, seeing how sad the post is and moving on, because I just... can't. Not on that day. So I understand if you just can't, too. That's ok. I hope you'll keep in touch, keep checking in, stop by when there's something more pleasant on our plate.

But here's the thing: that plate? Is overflowing. With everything and everybody. And everyworry.

At least that's what it feels like a lot of the time. I know I can handle it: I actually feel like I am handling it all pretty well, but I'm just saying: it's a lot.

None of the other problems I/we have been having disappeared when Nana died. Life doesn't work that way. My illness is not on hold because I don't have the energy to deal with it. My brother's relationship to his fiance didn't become all patched up, and his preferred form of dealing with stress (by not dealing with it) hasn't magically transformed either. The premature twins aren't uncolicky, and their mother is still a tad bit overwhelmed and depressed. The housing market isn't exactly friendly, and neither are the PUS. Things that were little got magnified, and things that were eventuallys became nows. It's unfortunate, but it's true.

And there's the grief. The little moments when you pick up the phone to call her for dinner, when you burst into tears because her favorite thing to teach was always the American Revolution, and she's missing a most awesome show? (Seriously, are you watching this show? It's on the HBO... and now I think Abigail Adams is a rockstar!)

I always feel compelled to put all the good things in, when I start a post like this, in the hopes of saying: 'I know it's a lot, but I've also got all of this!' I'm tempted to do that now, but that isn't what I wanted to write about. Check out my other posts from this week, if you're looking for the happiness.

And the happiness, it's here too. It's the complexity of things that's got me all churned up tonight. A night where my brother takes an Ambien and says it's for stress. Where Youngest Sister fills her plate with Harvard-y things, and becomes blind to everything else. Where Grandmother takes longer to recover from a cold than me (heretofore unheard of, I assure you). Where my doctor's appointment gets rescheduled, but I'm out of meds. Where my checking account starts to resemble Al Capone's Vault. Where my laptop's fan insists on making an extra hissing noise for no good reason. Where the Easter Bunny bought double the amount of candy, used to making twice as many baskets (one from us, one from Nana.)

It's a night for feeling overwhelmed, and I'm not going to apologize for it. I apologize too much: two people told me that recently, and I'm afraid they're right, so I'm cutting back.

Feeling everworry is a heavy thing, and sometimes you just need to set the load down for a few minutes. Thanks for letting me.

Ah, the details...

of being Maid of Honor are many.

But, they're also giving me some place to focus frustratingly unshut-up-able brain cells, so that's a plus.


I thought you might to hear some of the stuff that's buzzing around in my head re: the shower. If only because it's not entirely sad and depressing, which is a change of pace from our recent fare.


First off, here's a (slightly edited) version of our invitation -



Our theme is "a Perfect Pear," but only because I couldn't find any penguins that we could use as favors/centerpieces. (Penguins mate for life, apparently. Or, if they do not, my sister believes that they do, and she and her fiance call each other "Pengy" sometimes. They'd really be quite sickening if I weren't over the moon happy for them.)

Sister Ch scoped out some fabulous (rather large) glass pears at the Christmas Tree Shoppe (nice and cheap), and we're putting in pear jelly beans and a pair of pears, along with a little tag that says "J & K: A perfect pear." (I told you about the sickening sweet, didn't I?)


Things are moving along: the bill & final count is due next week, at the country club we're having the party at. The other bridesmaids voted against me (and SisterCh) and decided that having at a fancier place, but paying for set up and clean up would be better than having it at a less fancy place but having to do more of the work ourselves. Honestly? I didn't really care one way or the other. I just want the day to go well, and feel like if it doesn't, I will feel horrible for having ruined the whole thing. (I'm kinda sad like that: if things go well, I do not exactly rush to take credit, but when they fall apart, I'm right there with my hand held high. What's with that? IDK, but it's probably not for this post, since I promised not to be depressing.

In an effort to fight against that urge, though, I will tell you that I designed the invitation on my own. It's actually pretty easy, since I'm in love with Photoshop, but I still think it came out rather good.)

We're going to have games (although we're not 100% set on which ones yet), and cake smooshing, which I think is rather sensible, since Sister J is dead set against it at the wedding (what with the money she'll have spent on her hair and makeup), and Fiance is very much for it. I figure giving him his shot at smooshing cake in her face is a fabulous way to make sure he has a good time, anyways. And she won't care, because she's not like that, ordinarily.


Here's some of the info I just sent out to the other girls, to give 'em a nudge.

Hi! I just looked at the calendar just now, and noticed that the shower is.. you know two weeks from Saturday. Hello: time is moving too quickly!

I am going to order the favors this weekend, but we're up to 40 something right now, and there's only a few question marks, so we'll definitely come in under 60 people, so that's good.
We have to order the food next week (once we have the final count), as well as a cake (for smooshing & eating purposes), and then the total bill will be due right before the party.


Then I talked a lot of "show me the money," which I expect to be an issue. Because it always is. And these are my sisters I am talking about.

These are the favors we decided on for the wedding, though: how cute are they? And also? Because they're usable (everybody uses magnets!) they're much less likely to wind up in the trash or in the back of someone's closet. Mum has started packing up some of the stuff we almost never use, even though we aren't moving anytime soon, and unearthed a rather large collection of shower/party related ephemera that made me realize that a lot of this stuff is just more junk. People don't want more junk, but they do want something, so I thought this would be good.

So that's the latest from shower central: What's news or exciting where y'all are?

Tatooed Bride

Tatooed Bride
Originally uploaded by bbackprple

I'm finally feeling up to a little My Best Shot Monday, and, since I spent hours and hours yesterday printing and then assembling wedding invitations (which I will hopefully post later this week), I thought I'd give you all a little gilmpse of Sister J - the Bride.

Two months from today, my sister will be a Mrs. It's pretty astounding, and I just couldn't be happier for her. (For all the drama and the craziness and all that... to have her be happy? Especially after our past 6 months or so? Too, too amazing.)

So: Here's My Best Shot Monday picture. You can head on over to Mother May I to catch some more glimpses.

Messin with your math since 2005!

Sometimes I wonder what people think I must when they check their feedreaders, and I've been on their site.

Because, if I find something I want to comment on, but can't immediately think of what I want to say (like on this post), then I shrink it down, and let it simmer for a while in my brain.

And, by a while, I mean... sometimes three days. I think that's the record, anyways.

There are lots of reasons I do this: If a post is out of control funny, or too emotional to read in one sitting. Or if it's so powerful that I want to sip it rather than gulp, I just keep maximizing and minimizing it until I'm ready to move on.

It happens a lot: The talent out there in the world o' blogs is immense, people. I'm very often humbled by the words I see on my screen.

But still... I must really screw up people's statistics. So I thought I'd just offer this explanation: I'm not exactly a stalker. Really. I just... need to process a bit.

Sorry about your graphs, but I think you'll understand.

How to feel semi-human

Take a shower. Seriously, if I told you how long it had been since I had a real shower, you would stop hanging out with me. I got washed and everything, but the grease in my hair could probably have been mined. (I might've been rich! What was I thinking, getting rid of it? Also, is it mining when it's oil? It's something... crap, not as human as I'd like to be apparently.)

And then I had a nice shower coma, even if it was in the parlor.

And now I'm going to eat food, take pills, and attack a list. It better beware! LISTS: BE WARNED!

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?

:)

I am so over it

What, exactly?

Everything.

Mhmm. The dramas, the sickness, the sadness, the PUS poisoning me; thank you cards, invitations, and RSVPs; food that I'm not hungry for, naps I want to take but can't,coughing; sick grandmothers and missing nanas; political 'news,' cold sores, lawyers. I'm sick of it all.

And so, today? I'm just going to forget about as much as I can. Lose myself in some rereads, and float far far away. (or, long, long ago, as the case may be: I'm off to England with the Bridgertons. Their drama I can handle.)

Thanks for stopping by

According to my sitemeter, the two most popular search queries that lead people to this here blog are "easiest ways to kill yourself" and "L is for the way you look at me."

If you got here through that first search, I just want to say this:

I know.

You're sure that I don't, but I do. I know the fear that this is all there will ever be, this pain, this mess, this struggle. And the way your tired brain makes you feel like this is the only option left to you.

It's not.

I promise.

And getting help, from places like this or this or this, will wind up being less scary than you thought.

Although it's grim, and most likely not what I should be saying, here's a thought that helped me through: I could always do it tomorrow. When I was at my lowest low, and the only things that really stopped me were the idea of someone in my family having to find my body or how Youngest Nephew wouldn't even remember me, the thought that helped me the most was 'if not today, then tomorrow.' And I kept saying that to myself, along with a running list of the things I would miss out on if I weren't here. Until there came a day, just a random day, when the list of things I would miss started to weigh more, to mean more, than the idea that I could end this whole thing anytime I wanted.

My circumstances have seemingly changed very little between my time in the pit and now - in a lot of ways I'm worse off: I'm sicker now than I was then. And I've got all the years between of being not just sick but disabled, not just being unable to work, but being unemployed and having to move home, not just single, but single while all of my friends - even my family - are married and having babies. I've lost a lot of close family members between then and now. Those are all tough things, all really hard things. Sometimes they seem impossible to live with. But I do, I can.

Because I'm not stuck in a depression, not mired in the middle of a molasses-y black hole, where all I am able to do is think about how I'm stuck and the impossibility of ever becoming unstuck.

I don't know how, exactly, I climbed out of it. I was so afraid to say I was depressed because for years, doctors had been telling me that I wasn't sick, I was really depressed, and I should just take an antidepressant and get on with it already. But depression, to the best of my knowledge, doesn't cause 104 degree fevers, doesn't weaken your muscle tone and decimate your immune system. It can't make your tonsils swell up to the size of those baby turtles you used to see in cartoons, can't give you bronchitis, pneumonia, or asthma. I knew that I wasn't depressed when I first got sick - if anything I was on a high - and I knew that the three psych drs I'd seen since then had not only ruled out depression as the cause of my ailments, but one had gone so far as to call my doc at the time 'a stunning fool' for having even suggested it.

So while I knew that my depression wasn't the cause of my illness, having it as a symptom was just as troubling. I was about 6 years into being sick; I had developed asthma that spring, spent the summer roasting and the fall struggling to make it through a very tough internship with a supervisor who told me I would "never become a teacher." I got sick again and again as the kids so kindly shared their every germ with me. My beloved uncle died, and I was to sick to drive down for his funeral. Things kept piling up, heavier and heavier.

It was like being in a snowstorm, and seeing all that snow coming down. You see the coating that comes and try to sweep it away, but it's too heavy for the broom you've brought. And while you were gone, looking for a shovel, the snow has gotten deeper and heavier. You try to shovel, but the snow is coming too quick. And by now you're very, very tired. So you walk away for a while, figuring to just let it sit, wait for the flurry to pass, and then you'll deal with it. But the flurry turns into a full blown storm, and the pile keeps mounting, it multiplies. You try to tackle at least one path, so you can get out, but every time you think it's clear, the storm starts up again. Exhausted, you retreat to watch the snow from the window, amazed at how quickly it piles up. You start thinking that the blizzard will never end, that you'll never be able to clear that much snow out of your way. You're stuck where you are - it might just as well have been an avalanche, for all that you don't have the strength to plow your way through what's there. And then it starts to seem reasonable that you would just go out there and lie down in it, let it cover you up, cold and numbing, until you didn't have to worry about it, suffer through it, anymore.

I wish I could say that the sun came out and melted all the snow away, but it's mostly still there. I've just managed to shovel out a lot of paths, to find safe places to hole up when the storms are strongest. For some people the path out is meds: I tried a few and found they were no real help to me (surprise, surprise: meds not working for NTE? Shocker.) Exercise helps, even the gentle stretching I'm sometimes capable of doing makes me feel peaceful.

For me, the best path was people: I'd been isolating myself, more and more, little by little. And the CFIDS/FM had already done a pretty good job of cutting me off from most people, so it was shockingly easy. I stopped calling home so often, I shared less with my Roommate/Best Friend. Kept things that were bothering me a secret, ashamed of what the people I had left - the people who were closest - would think.

It was dumb, and Roommate/Best Friend told me so, right to my face. She snuck her way back in, somehow, and wouldn't let me close the door. At home, Mum did the same. Wormed and wiggled their way back in until I could see that I didn't have to do this whole thing by myself. That there were people in my life who would be just as outraged as I was that a person who was supposed to help was so cruel to me (Roommate/Best Fried immediately began calling her Bitch Lady, as in "Bitch Lady left a message on the machine"), who would be just as scared as I was over the fact that my liver was malfunctioning, that it might, in fact be shutting down.

Once I realized that I didn't have to do it alone, I realized that I could do it. It was never easy - it still isn't easy. (An easy way to tell that would be to look at the name of this blog.)

But it's worth it - I may be sicker and older and sometimes feel more stuck than every, but I'm also so much better off in a lot of ways: I've watched Youngest Nephew grow from baby to boy, had a hand in his raising, and feel pride at how far he's come. Lil Girl wasn't even a vague idea at the time suicide was uppermost in my mind, and now she's what's uppermost in my mind a lot of the time. I've got a lot of honorary nephews and nieces to spoil, and can see that Oldest Nephew is going to be taller than his mother in a matter of months. I've spent time with the people who mean the most to me, shared moments of unspeakable sadness and unbearable joy. I've started this blog and 'met' some of the most thoughtful, caring, individual people I've ever known, all the while being able to work hard at writing true, to document some parts of my life and say: this is me, take it or leave it. To know that people get it. To have seen my illnesses go from fringe and crazy to less fringe and suddenly researchable. To be able to hope that someday they'll figure this shit out.

There's a lot of times, especially recent times, when I see the snow start to come down and I wonder, do I have the strength to shovel out this time? What if I don't, what if I get stuck again? And the best part is that now I know enough to think that if that happens, someone will come for me in their snowmobile, at break neck speeds if necessary. All I have to do is ask.

So, if the Google has brought you here in search of easiest ways to kill yourself, I hope instead that you'll consider this a shovel, a snow plow, hell, even one of those tiny gardening spades. There are people outside of the storm who can help you, you just have to let them know you need the help.

Oh, and if you want to see some of my shovels, click that second link up there: L. O. V. E.

At the restaurant after Nana's funeral, Big/Only Brother and I were left alone, waiting for Mum to bring the car around. It was just the two of us and a waitress, hustling through trying to clean up the debris us grieving people had left behind. (PS: Grieving people apparently eat a lot.) He sat the wrong way in one of those restaurant booths, I was in my chair across from him, making the wheelchair rock the way I do when I am upset.


I asked how he was doing, he asked how I was doing. It was one of those times when it just seems as if the whole thing is too much. I was in so much physical pain, from pushing to be able to do all the things that were required of me, and so much emotional pain, that I could feel only relief that it was over. That there were no more "have to-s" on my list, even if only for that day.

He looked much the same, exhausted, crushed and confused. There were other things that happened then that I am not ready to talk about, but there was a moment when we were sitting there by ourselves that stands out so clearly in my mind. He asked me what I thought: "Do you think she's gone, that this is the end?"

And I told him: "I don't know. I don't know for sure if there's anything that comes next, and that bothers me deep down in my analytical, must know all the ins-and-outs of everything soul. It's one of those things I've studied to death. Back and forth and forth and back: religiously, psychologically, intuitively, factually.

And I've still come up with no answers.

But I know that it makes me feel better to believe that she's someplace else, someplace better. Buying Papa that drink and taking Maryellen to task for leaving without her. Watching over us and crying with us because we're so sad. And I don't care if that is just my subconscious trying to deceive me. If it wants to help me feel better, even just a little better, then I'm going to let it. What does it matter if it's true or not, if it feels true?"

He looked surprised, then laughed and gave me a kiss. We moved towards the door & mum's car and I asked him what he believed. And he said: "Up till a few minutes ago I had no idea."


Inspired by this post by Sweet & Salty.

Some laughing links to share:

If I have to explain to you why this is one of the funniest things ever, then I'm not really sure how you got here: God, how I hate that stupid Castle Toad! It's not just about the toad, though: Heather! Anne! nails all 5 as she reminds us all that sometimes being alone on a deserted island is preferable.

Also, you should head on over to Jennie's! place, and see how many times you can say "That's what she said" while you're reading.

Cuz anything that makes me laugh today, is worth it's weight in gold. Or finger sandwiches. Or meat. Either way.

Also, if you're into that kind of thing (which I usually am not), may I suggest you head on over to YouTube and see what Jimmy Kimmel, Sarah Silverman, Matt Damon & Ben Affleck are up to? Crude, senseless, totally shouldn't be funny. But I laughed. A lot. Out loud at one point. If you want, go see if it makes you chuckle too.

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.

Sometimes my life really sucks.

Now would be one of those times.

I've avoided talking about it here, but since my Nana's death, we're having some issues about housing.

As in: wouldn't it be nice to have some?

I know I've talked about our living arrangements before: we (my parents, one sister, and I) live on the first floor, my Nana lived on the second with The PUS: her son, his wife and their three kids (whose bedrooms were on the 3rd floor). Now that my Nana isn't here, there's really no way we can afford to keep the house - she owned it free and clear and left it to my mum, the PUS, and Auntie E in equal shares, but there's taxes (insane) and maintaining/fixing it (about triply insane), plus there's the fact that we don't want to live with the PUS now or ever again.

Now that Nana is not here, there will be no heartwarming reunion where they ask us all to forgive them for what they've done: At the hospital, the morning she died, Mr. PUS claimed one of Nana's hands, and I wanted to punch him in the face. Mrs. PUS walked around in tears and said things like "it's for the best" and "you should call your uncle, he really misses you guys." As if the reason we don't speak to our uncle is that we lost his phone number, not because he is a huge asshole. As if they didn't play a very large role in Nana's illness getting to the point it did as quickly it did. I could do a very large rant right now about their role in Nana's life, and how much they wanted her dead (and said to her face "I'll be happy when you're dead!") but that's not what I came here to rant about, and you know how I like to stay on track.

Anyways, there will be no forgive and forget moments between us - I think they are abominable people and I will not allow them to continue to have a role in my life, because I know them to be toxic. I'm through trying to see things from their perspective, giving them a fresh start/another chance, even listening to their excuses: the only reason I had to listen to them before was because of Nana. I know that they are the same people who called my grandmother a 'raving bitch,' who refused to stop painting the porch when I started having an asthma attack because they were 'halfway through a coat,' who threatened to 'punch (us) till we bleed, because (I) won't be able to stop myself.'

And I know that continuing to allow them access to my life, or my family... would be poisonous and crazy.

Except that we're still living in the same house. And, of course, the PUS are the most self-centered, careless people on the face of the planet.

Which brings us back to the whole 'where are we going to live' issue. Because the PUS, who weren't supposed to make any decisions regarding the house until the lawyer's papers all came through; who assured us that they weren't going to 'so much as dust' Nana's things (and yet threw some of them away); who were offended when Auntie E's husband asked them what they were planning to do about either buying the house or selling it (we haven't even thought that far ahead!") - yeah, that PUS?

Well, they're having the upstairs floors sanded and varnished.

Next week.

Oh, there'll be 'no smells - the guy promised!'

And the sanding won't be an issue either because it's upstairs.

Right.

I just did a ton of research, and none of it said anything about 'odor free'... as a matter of fact, most of them mentioned 'health concerns' and 'toxicity levels.' That sounds fine... that sounds like something I'll be react to perfectly well.

So, I may be on the move. I may be permanently on the move, as I doubt, once they start, that they're ever going to stop. There'll be varnish, and sanding, and painting, and gluing, and hammering, and all of those things that come along with fixing up a 125 year old house.

Meanwhile, we don't have enough money to just get our own place right now, so I'm going to, most likely, be imposing on the kindness of my relatives (SisterJ, who's got a couch: Yay, almost newlyweds! Have a sick sister living on your couch! or my Grandmother, who, you may remember, turned 90 last July. Not that she wouldn't love to have me, but still... It's hard enough having to move back in with your parents because your sick and can't do everything for yourself, but to have to move in with your 90 year old grandmother? Yeah, that's not exactly in my life plan either.) But we do what we have to do, and I may not have any choice.

However, Nana's lawyer (who hates the PUS because he's an 'arrogant asshole') says that he'll help us out, so we're going to try to get some sort of Temporary Restraining Order, so that he won't be able to do any improvements without the consent of the two other owners (Hi: we hate you, and no you can't fix anything because it will make me sick. The End!)

We'd still have to sell the house, relatively soon... but by then, hopefully, the money from Nana's trust will come through, so we can find someplace else to stash me. And it won't be two day notice that I have to leave behind everything and live on someone's couch for however long.

The funny part is that the lawyer doesn't really know if he'll be able to get the TRO on the grounds of my health concerns, but seems pretty confident that they'll be able to get it because of the money involved: PUS will no doubt be applying to Nana's accounts for the funding - he, however, gets no funds from her estate... which was as cold as she was willing to be to him, unfortunately.

Me? I've never met people more deserving of the "comes around" portion of the whole "What goes around comes around" maxim. I'd like to say that I'm done letting them have even the tiniest bit of say in my life, but I can't really afford to just move on my own (healthwise or financially).

So for now, let's all pray that the restraining order comes through.

If not, it's just something else I'll have to deal with. Which I will, because I can... I just don't want to have to.

So, I wouldn't mind a break right about now... maybe I'll see if we have any chocolate.

Things I don't get that other girls do...

(Part 1... of probably 1 billion.)

Valentine's Day.

I just ... don't get it.

I mean, I am a Card Person. Capital C, Capital P.

I know the location of 3 local Hallmark Stores. I know two of the salespeople at one store as more than nodding acquaintances (I may or may not know the names of their children).

I can, very easily, spend upwards of $50 (and 50 minutes) on choosing cards alone. I usually have a multistep approach to buying cards...
- Step 1: Pick up cards that I like, have a need for, may someday have a need for, or just plain want.
- Step 2: Try to keep a running tally in my mind of an approximate cost for the cards I am gathering.
- Step 3: About 45 minutes later, after having gone through each aisle of the store at least once, realize I now have enough cards to wallpaper my room with, and no freaking idea of how much they cost.
- Step 4: Realize that I cannot rob a bank in the next 15 minutes, which requires cutting the pile of cards in my lap down by about 75%.
- Step 5: Still spend about double what I had set out to spend, but walk away happy just the same.

If those steps get screwed with -- if I have an urgent need for just 1 card, for example, I feel disappointed that I did not get to loiter in the store for hours on end.

So I love cards. Hallmark commercials make me cry, I am sappy and sentimental and have a gooey chocolatey center. I celebrate St. Patrick's Day, and Grandparents' Day, and even sent a Friendship Day card one year (albeit totally by accident.

In short, I am the sort of person that seems tailor made for Valentine's Day Fever.

And yet, I have none.

I know what some of you may be thinking, but I am also not a Valentine's hater: a cynic, heartbroken at having spent her entire 28 years on earth Valentine free, set lose to terrorize the 'lucky few' out of their moonlit dinners and conversation hearts. (Well, I doubt that any of you are thinking that, but let's just say it wouldn't be the first time I ever heard that theory...)

No, I'm all for you having a great time if it means something to you... I just don't get it.

I like Valentine's Day parties in classrooms ... as you are reading this, children everywhere are sneaking business card-sized envelopes into the specially decorated desks of their classmates, eating cupcakes bedecked in pink sprinkles, or wondering at who could have possibly signed their card with a question mark. (And their teachers are shaking their heads at their naive belief that they might have actually accomplished any work today.) And, when you're teaching, any excuse for a party is welcomed ... but I don't get it: It isn't as if there are extensive curriculums set up that delve into the philosophy of love and it's many representations, or that there's a historical imperative to learn more about this wonderful patron saint of fainting, the plague, bee keepers and lovers (wow, I love being a Catholic!)... It's just, "Hello, it is February, and this is what we do in February."

I don't get buying roses when they're 3 times as expensive as they might be on any other random Thursday. Or heartshaped boxes of chocolates that are irresponsibly unlabeled (I hate those orange creme ones: why are they even in there??)

I don't get why single people have to feel lonelier on the 14th of this month than they would on any other mid-month (especially since, any other 14th day would not find them feeling particularly lonely at all). Or why couples should have to feel the pressure of adding a perfect night to their weekly routines. I don't get imposed happiness any more than I get imposed unhappiness.

I don't get how guys forget Valentine's Day, when it starts being everywhere right after Christmas, but I also don't get why it's so important that they should have to remember it.

It's just one of those things that I missed out on, like the need to buy shoes that cost more than a good camera.

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I'm going to try to get back into posting: I've been missing it, and all of you.
My days are still very difficult: knowing the right thing to do for other people who are grieving, particularly my mum, is a hard, hard thing. Knowing what to do for myself is proving pretty difficult as well.

But I think we're all doing ok, and I'm going to keep thanking you all for all your help, just so you know how much I appreciate it. For now, I need to write again ... it helps me remember that there are other things going on -- in my life, and in the world -- and helps me feel more like myself. And I can use all of that that I can get.

Go Pats

Wanted to say thanks, again, to all of you. Mostly because I know you're here: my brain is starting to be able step outside the ridiculous dramas that are happening in my family, and see them and go "What the hell is happening here?" and I know that a large part of that is thanks to the blogging part of my brain. The part that thinks "wow, where's Janice when you need her?" or "Maya's Granny would know the perfect thing to say right now." Please know that with all of the absurdity & disconnection from reality and drama that is happening here, everysingleday, that so many of you are in my mind and heart, helping me to get through it.

And to get through all the regular stuff, the stuff that shouldn't be this hard, like four o'clocks and football games.

Tonight's game is niggling in my mind like no other football game before it, only because of Nana: She and I had a running faux-argument about the merits of football. She insisted that there were merits, and I insisted that if a grown man wants a piece of leather that he can throw around, all he needed to do was go to the store and buy one - there was certainly no need for all this traipsing and chasing up and down of fields, and certainly no need for tackling and being injured for the rest of your life for a stupid BALL. Nana suffered my lack of interest in organized sports (and my Kindergarten teacher-let's all just get along- mentality) semi-stoicly... which means that she and I had essentially the same discussion every time a football game was on, particularly a Patriots game.

Nana was - with the exception of the Red Sox (or "Red Slobs" as she called them), a diehard, home-team sports fan. The heydays of the Celtics and Larry Bird were crystal clear in her memories, and she even had a positive thing or two to say about the Bruins, even though she found hockey mostly boring. But the Patriots were her team - I'd like to remember some of the stuff she told me about them here, but I honestly wasn't paying that much attention: football players that were good, football players and coaches that sucked, traitors and the traded, glories and goners... she knew a lot of useless Patriots information, and watched every game as if the team depended on her in order to win.

Which, of course, they did. She would run up and down the entire field with them yelling and stomping, cheering and jeering. Coaches were called horrible names, players had their honor defiled. Even when they won, she'd be sure to tell me how they almost screwed it up.

And this is - in case you aren't interested in football &/or don't live in New England - a record setting year for the Patriots. They've gone undefeated for the entire season, heading into the Super Bowl. No one's ever done that before, apparently. Which is great for them, and would, ordinarily, mean very little to me...

Except this is a game my Nana won't be here to nag me into watching.

In Super Bowls past, we've watched together, me reading during the football and listening to her scream, her tsking me when I would look up in order to catch the new commercials, then head out for a cigarette. I know there was another football game they were in, the day after she died, but I wasn't ... aware ... enough of anything for that one to matter to me. This one, I feel it.

I feel all the hype and crazinesss, and I just wish it were over. I miss the "What am I going to do with you, you have no sense of team spirit?!?" conversation that we'd have already had 3 times today.

And I know that it's just another football game, that it has no impact in my life besides this: It's just one more thing we won't be doing together.

I don't know whether or not I'll watch try to watch it alone (Sister Ch probably won't be watching, and Mum and Dad will no doubt be smoking in the cellar), or take advantage of my first Tivo-fied Super Bowl and wait till later and just watch the commercials, or just... blow off the whole thing altogether. But I know that Nana will be riding the coach... (I seriously looked up the coach's name to add it to this post, but that felt forced... Nana will know it either way) from the sidelines, giving him her very clear opinions of each and every play. And even heaven won't be able to help them if they lose.