My Best Shot Monday

Happy Last Day of June (already?!) everybody. It's Monday again, and here's one of my best shots recently.

We've been talking a bit about how Lil Girl is certainly no longer a baby anymore, but a full fledged 2 year old. Her speech has blossomed in the last few months, so that our conversations are rich and often entertaining. (Even the 'why cuz' ones.) She's moving from scribbling to trying to make representational shapes, just in the past two weeks or so. She and her brother now don't just grab toys and grunt at each other, they can have real and meaningful arguments (If "Mine! Mine!" & "No, it's not!" are to be considered meaningful). She's coming out of that period where she didn't want to even look at anybody she didn't know really well, and her personality has exploded.

So here's the first picture I took of Lil Girl that made me gasp when I saw it: I immediately realized, Oh my goodness: She's growing up. Sometime in the space between the previous picture and this one, I had a little girl in my sights, not a baby.






It's so exciting!



(As for the promised wedding pictures, I've got posts upon posts still to deliver, I know: Come back Wednesday for the getting ready pictures!)

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!

Mosaic Meme

A little meme that I saw over at Abigail's. I love to play on Flickr, so my only difficulty was staying on the first page long enough to put the whole thing together. I may have gotten distracted a few times. May have.


Here are the rules:

The concept:
1. Type your answer to each of the questions below into Flickr Search.
2. Using only the first page of results, pick one image.
3. Copy and paste each of the URLs for the images into Big Huge Lab’s Mosaic Maker to create a mosaic of the picture answers.

The questions:
1. What is your first name? For the purposes of this blog, it's Never
2. What is your favorite food? right now? Right now I could use a pickle
3. What high school did you go to? Somerville High, baby
4. What is your favorite color? Purple... well lilac really, but I put purple.
5. Who is your celebrity crush? I am totally crushing on Stephen Colbert... drool
6. What is your favourite drink? In the summer, I love iced tea. The iced tea in the picture happens to be alcoholic, but I really like the picture so pretend it isn't.
7. What is your dream vacation? I said restful, because that's all I really want right now, just someplace where I feel content and rested for a little while.
8. What is your favourite dessert? My grandmother's lemon squares, which didn't look like any in the results (they're not like a cookie, they're like a ... pudding maybe?), but I LOVE the irony of the picture I chose.
9. What do you want to be when you grow up? A mom. Not thinking about that right now. Moving on.
10. What do you love most in life? Tender moments: those times in life when you're with the people you love most and you're really experiencing it, really feeling it. The ones that you look back on and think "this is why I put up with all their craziness, this is why I'm in the world."
11. What is one word that describes you? I always respond to the question "How are you?" with "I'm doing." It doesn't say much, but I've learned that most people don't really want to know much. So I picked 'doing.'
12. What is your flickr name? BBackPrple, which is a combination of my favorite color and something I used to say when I was little. Every time I'd be going somewhere I'd say "I be back!" It kinda stuck and is now a family saying.



1. Day 203/365: You Never Let Go, 2. Cornichons smell an awful lot like pickles, 3. Zenith Space Command, 4. PURPLE HAZE, 5. Stephen Colbert Christmas Ornament, 6. Long Island Ice Tea, 7. sweet dreams...zzz..., 8. lemon squares, 9. ~ A Kiss For Mommy ~, 10. A tender moment 2, 11. When Waves Collide, 12. Sign of a good book

Please, please feel free to play along: it's a great way to spend a little time, letting your mind wander.

Have a great Sunday & Happy Father's Day to all my dad-type readers (are there any? If so Hello!)

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.

A get back on track Monday post....

Here's one of my favorites from the rehearsal dinner: Lil Girl and her bride bear, looking all angelic as we wait for the coordinator to finally let us practice. (SisterJ, the bride, was not looking all that angelic at this point, I have to say, and I didn't blame her: coordinator person, it would be nice if you were helpful instead of making things worse. A little tip from me to you.)

Hope to have a bunch of getting ready pics posted for you either tonight or tomorrow... I told you I'd try catching up!

Clean-slating it...

Oh internets, I know I am still waaaaaaaaaaay behind on all of the pictures I have promised you, all of the stories I must tell. To that I say: it'll come when it comes.

I've been trying really hard to catch up, I've been trying all year, since Nana and all of that drama, to just catch up to where I'm supposed to be. And you know what? It's not going to happen... all of the things I was supposed be doing at some predetermined and arbitrary schedule? Yeah, that's so not happening.

Yesterday was my birthday. I am 29 now. It feels very, very strange. There's a lot of things I wanted to have happen in my life, a lot of things I always assumed I'd have or be or be doing by now. And those things? They're not happening either.

It's a lot to deal with, but it's also a lot like taking a big deep breath and letting it out. There's a lot to be said for letting things go.

I have a lot of things I need to let go of, a lot of expectations that I need to reexamine and readjust. And I'm starting to get to the point where I think I have the psychic energy, the emotional strength, to actually do it. I'm not all the way there yet, but it feels like I'm getting there. Getting to the point of being able to say "I'm sorry all of the things you assumed would happen in your twenties just didn't happen for you. It wasn't fair, or right, but it's what happened. You're here now, and you're (mostly) ok. You're (mostly) happy. You're lucky to have come this far, really. So you need to just take those deep breaths and let it go."

It's certainly not an easy thing to do, but it's starting to feel like the only thing to do. It's starting to feel like if I don't do that, if I don't try to let go of some of the things that have been hurting me for so long, I won't be able to make it. And that's not an option for me.

So I have to stop pretending that I've been ok with all of this, with the fact that my body has betrayed me so cruelly. I'm not ok with it... but I can deal with it. It's ok for me to be mad about the opportunities I've missed out on, to be disappointed that I so often feel like a spectator instead of a player. It's not an easy role to have. But if it's my role - if it's going to keep being my role - then I really have to embrace it.

This is one of those posts that I keep not posting because I think it doesn't make sense to anybody but me. But you all often surprise me, so I'm going to let it go this time, say it and put it out there.

Basically what I'm saying is that I'm trying to move forward in a way that is more than just making it through the day. I want to find a way to be living in my skin - my painful, achy, worn out body - and really be happy in the spot that I am in. Even if there's things I don't like about it.

It's so tricky, cuz I often think I'm accomplishing that, but I know right now I am not, I know right now it's been impossible to get past how much I hurt. But I'm going to keep making the effort anyways.

So... next deep breath, and moving on!

Rehearsal Dinner: Pass the wine!

So then, after the rehearsal, we all went out to dinner and had a pretty good time. Here are some of the Best Shots from our little get together. Honestly, at this point in the festivities, people were still trying to be on their best behavior. But the stress, of trying to get everything finished by Saturday (this was Thursday night)? Oh, it was pretty heavy.

But here's the happy couple, and they did a good job of putting aside most of the pressure in order to have a good time. SisterJ's anxiety got a good strong hold on her when we'd first arrived at the church - mostly because of an annoying coordinator lady who was pretty damn unhelpful - but she'd managed to calm down a lot by the time we got to the restaurant.


My two nephews are four years and usually quite a few miles apart, but they still manage to get along pretty well. Here, in response to my request that they do 'something fun,' the pose as 'Secret Agent Spies,' which they continued to be for the next two days. Once they got their tuxes on? It was look out evil, here we come.

Here's Big (no longer Only, as I now have a Brother-In-Law!) Brother and Oldest Sister/SisterS. These two were the least... caught up in the wedding- brouhaha, and all it involved, and while I guess that was good for them, it wound up being pretty hurtful, in some ways for SisterJ. SisterS not only left the bachelorette party about halfway through, she set herself apart at the reception, secluded with her boyfriend, and then left early, even after SisterJ had told her she'd be hurt if she did Ah, the drama. Mostly, I don't understand SisterS as much as I can my other sisters - she's lived with her mom, and therefore apart from most of us, for various times in her life. She's also at a point in her life where she thinks a lot of things are a waste of time, energy and resources - unfortunately, this included what she called the 'overreactions' of SisterJ about stuff (relating to the wedding) that 'isn't really important.' I'm not saying that there wasn't a certain amount of obsession on the bride's part, when it came to the wedding and the details and all of that, I'm just saying that SisterS, and her lack of tact didn't exactly help things. She just didn't handle things well. But here, at least, she's having a good time.



Here's Dad, my new Brother-in-law, and his uncle, about 1 and a half bottles of wine into the night. Deep discussions, and at least 5 more bottles of wine and a bottle of lemoncello followed.




Obviously:


Now, neither Lil Girl or I were drinking, but we still had a good time ;)




Here's Big Brother and Sister K being sweet too (although I won't swear to how sober either of them may be)



SisterJ and her bosses, who had nothing but nice things to say about her. It's so weird, sometimes to see your younger sisters as adults. (Yes, I realize that's an odd thing to be saying when I'm talking about her wedding, but that's a whole 'nother issue.) I was so proud that these people, who'd stood by her during this really trying year, were able to see just what a great person she really is, issues aside.


And another great shot of the bride and groom, as the evening wrapped up.



Oh, there's tons more --> you can click on my flickr account if you're impatient, but I think I'll be getting around to them as time moves on, if you've got it in you to wait.

Up next, a few finishing touches & the getting ready craziness!

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