Oh Lordy,

am I tired and sore.

I'm dragging this week, people: the tonsils that ate my throat are back, trying to see which of them can be bigger. And of course, there's the tiny matter of a slight fever, and, you know... it's hot here, right now, so I'm hot and sweaty and sticky. And, I suppose, slightly crabby... because that sounded a lot like whining to me. Which I don't like, sooo MOVING ON.

So yesterday (or the day before, I guess, because it's 3 in the morning), I got my fantastic Color Me Happy Swaparooni gift, but I haven't taken a picture of them yet, and now it's very very dark and you wouldn't be able to see the pretty little stitches in my pillowcase... The theme this month was Comfort, so getting a book and a pillowcase hit the mark exactly: The SmockLady did a great job, and she sent me what seems to be a great, relaxing book. This was my first swap, and I was soo excited. I hope she likes her package: when she gets it, I'll post what I sent, so everybody can see... I had SUCH fun picking out little pieces for her package, and reading her blog, getting to know her and her family. You should pop over, if you get a chance, congratulate her on their expanding family. You all know how I love big families, so I think Ms. Smock is one lucky lady!

I did reconsider, more than once, joining the group, but only because I hardly ever leave the house, so planning specific trips just to go shopping is not in the normal realm of things around here. But it did me good to journey out of the familiar - and to get out of the house in a non-doctor/hospital/test related way. I've paid up to be a part of the next 4 Swaps, so I'm going to stay in it, I think... It's nice to have something different to look forward to.

People who aren't sick say things like "Don't let your illness define you" all the time, and it's something that makes me want to punch them in the face, because... well, everything that's important in your life defines you, and being sick is pretty damn important. But it is nice to have something separate from that, something that's got nothing to do with pain or pills or my sisters or my parents... just something that's mine.

It's why this blog is so important to me (and why I keep it so anonymous): because it's hard to have anything that's just your own, and I need to protect those things when and where I can find them. So I'm glad to be a Swaparooni member, and will be doubly glad when The SmockLady let's me know that her package arrived safe and sound.

And I'll try to get some pictures up tomorrow... or this morning, if I feel like it when the sun finally gets up.

Happy Wednesday all!

The Good, The Bad, and the WTF (in reverse order)

So I've got an appointment with Zach that I have to leave for in about 20 minutes, and I've been going over the copy of my medical records they sent to me as I search for a primary care doctor that accepts my health insurance. (He's a specialist; it's a long story.)

I spent about 3 hours going over the last 3 years in blood tests, trying to nail down any patterns I saw, trying to see if we'd addressed any of those patterns, trying to figure out where the hell all the other reports and tests I've had were. (I get the impression this is just a summary of my records, cuz there's a bunch of stuff missing. And the summary cost them $8 to mail.)

I'm full of questions for this appointment...The WTF: I've had abnormally high platelet counts and consistently low MCHC (apparently "Hemoglobulin per red blood cell count") results since I first started seeing him. Have we addressed this? Ever? And what does it mean, exactly to my symptomology?

My liver issue, which I always thought was being controlled, keeps popping up in the test results - high ALT, high AST, hig GGT: Should I be doing more than I am to help this?

And how, in the name of all that is holy did my Bruceillosis Titer go from 11 (which is the highest it can be and still be considered normal) to 12, to 17!?! In less than a year?

Did anybody ever hear that saying that you shouldn't listen at doors because you might hear something you didn't want to? Yeah, well that brings us to the Bad: In his latest dated report, Zach calls me "Significantly obese." I was literally shocked to read that. I know I'm fat. I know I'm about 35 lbs over the weight that I should/want to be at... but to read that as part of my clinical notes was, for whatever reason, shocking.

And it kinda pisses me off a bit too, because I've had doctors who assume that my weight has a lot to do with my exhaustion and pain and inability to walk... and certainly, it's a contributing factor now, but I weighed 122 when I first got sick, I was an athlete - dancer - and I even walked while I was reading. I wasn't overweight (though I always thought I was), and it certainly had shit to do with me being sick. Being sick, on the otherhand? is a direct contributing factor to my weight: Can't move without it hurting (can't exist without it hurting) & exercise makes me pass out... so fabulous! Should be wicked easy to lose weight in those circumstances.

Actually, I lost a ton of weight when I first got sick - when my appetite died, the weight came pouring off of me. There was a lot of talk about an eating disorder, but it was simply that I could not make myself eat food when I constantly felt like puking. It was never in the dangerous category, thankfully, but everybody - my parents and doctors, especially - were worried if not downright scared. About a year into it, something changed, and all of the sudden I had a craving: the only thing I had an appetite for was salt. SALTsaltsaltsaltsalt. It was as if I couldn't exist without it (and turns out, with my low BP, I probably couldn't have).... so they kept telling me to add more salt, to eat even if I felt like throwing up during and after... and it got to the point where I would force myself to eat, as fast as possible to get it overwith without puking midmeal. (nice... hope you aren't eating!)

And my appetite still hasn't returned, but years of not being very active and eating without really caring what I was eating, and yeah: I'm overweight. It's not the way I want to be, and I know there are changes I can - and should - make when it comes to food, but I've got reasons (and probably excuses) about why that hasn't happened yet.

Either way, to see it in print? Shocking - 'significantly obese'? Really? Damn.

On the otherhand, in the Good file, Zach lays it out in black and white, over and over again: "I do not consider her sypmtoms to be psychosomatic, as a previous doctor has suggested" Damn right! "Patient is imprisoned by her symptoms, and desperately needs answers." Check! "Patient is frustrated by lack of progress, and I do not blame her." Hello! "Patient is a kind, caring young woman, and her illness is stealing years off her life. We're going to work with her to help her best cope with her symptoms." Is there any wonder I like him so much?

Now.. off I go. Again.

One of the bright spots

It's nice that a new week is starting, so to get it off on the right foot, I'm going to put up a Best Shot, and then try to check out everybody else's.

Here's Lil Girl, 'asleeping'.



She hasn't quite figured out yet that I can tell she's not really asleep because she's grinning &/or laughing out loud, but that just makes it more fun all around.

One less

There are days when I feel like this is all too much for one person, that I could bear things, if there was just one less thing. Just one less issue, and my life would be manageable.

I could handle the being in pain and being exhausted and picking up every single germ, if I didn't also have to handle the smells or the migraines or the inability to breathe.

I could handle the brother with an addiction, the other bio families of SisterK & SisterS, and SisterJ's horrifying depression if I didn't also have to live in the same house as the PUS and know that their karma hasn't caught back up with them yet.

I could handle having to move, having to find a place to move to, having to make concessions on the little things, if I didn't also have to fight the PUS in court in order to make it happen.

I could handle the newest rashes, the inability to go outside when the sun is shining without wanting to cry, the past three years without a single night's uninterrupted sleep, if I could just eat food without feeling like I had to throw up.

I could handle AuntieE being in a coma, Mum's knee suddenly blowing out on her, SisterCh's new mega-hives, if I didn't have to handle Nana having cancer, Nana being so sick, Nana dying.

It always feels like if I just had ONE LESS worry - If I could focus on Mom's grief instead of my own, or when to get over to Grandmother's house instead of the stupid ants that are marching across the floor, then my life would be ok. Then I would feel like I had some control over what was going on.

But it's never one less, in my experience, and almost always one more.

And the past few days have been full of 'more's - More little annoyances, more bad news, more things that need to be fixed but you can't see a way to fix them.

SisterJ's depression is crushing her again, and she's hiding from us because it's too hard even to talk. She's getting help, has been getting treatment all along, but a new medication change seems to be making things worse. On the phone, her voice is that scary void again, and I know she's feeling nothing so much as not wanting to be here, to not have to deal.

It's a frightening thing to recognize, and to feel a small echo of it in your own heart. I'm not suffering from depression right now, but I have in the past, and it's been the kind of day, week, month, and year where you can see how shockingly simple it is to go from sad and grieving and worried and weary to completely depressed. I'm being vigilant, I promise, but today is one of those days where all of my burdens seem heavier than usual, when I have to escape into a good book or stare at stupid movies all day because being me is just too much.

I don't feel hopeless or useless or as if tomorrow might not bring something worthwhile, which were all the things I felt when I was depressed, but today I feel overwhelmed and scared and tired. Just tired of having to cope. Just wishing that things were just the tiniest bit easier.

Just to have one less.

So much to say...

Hi there ~ Even though I'm Blogging Without Guilt, I sometimes still feel badly when too much time has gone by. There's only about a million times during the day (and, therefore about 7 million during the week) where I think of something I'd like to share with you all. My biggest hurdles are time and energy: I often have to spend the time I have trying to re coop the energy I don't. So blogging gets the short stick, and that's probably why I have about 6 regular readers.

But the thing is? I really like those readers, and don't want any of you to think that I don't appreciate the time you spend here, reading these posts, listening to these stories, commenting on the cuties in my life. I really, really do.

So, moving on:

One of the things that was going on this week, in case you hadn't heard, is BlogHer... I am, obviously, not there, but I've been following some of the live blogging sessions, and I have a post I'd like to finish up tonight or tomorrow on a topic close to my heart.

I actually have, like I said, lots of topics close to my heart... it's just the getting them out onto the screen that's the issue. Tonight's topic (besides assuaging my guilt at leaving the same post up for almost a full week) is supposed to be my Grandmother's birthday.

My last surviving grandparent turned 91 today, and put together that way, the subject and the predicate combine to make a very frightening sounding sentence. However, I'm going to put that aside for a bit and tell you that my Grandmother does not seem 91 - she's got some health issues, sure... but she handles them.

I just typed and erased this sentence: "She's the same woman at 91 that she was at 71, and she was probably the same then as she was at 51 and all the way back." I erased it because it is, of course, completely false... she's very much not the same woman she was twenty years ago, or 10 years ago, or 50 years ago, because that's impossible. She's a different woman, because she's had 10, 20, or 50 more years of experience to add to who she is... but the point I was trying to make is that she's still HER.

Add 6, 12, 24, or 56 years, but she's still herself. She hasn't lost more than a marble or two, and since she had 9 children, you can blame that on them. Her health challenges are challenging, sure, but they're a part of who she is now, and she faces them, lives with them, adapts to them, because she has to.
She's still a mother that worries over her baby boy - even if that baby boy turns 66 this year.
She's still a flutterer who can't sit at the table for more than 3 consecutive minutes without having to buzz out to the kitchen to hustle other people along.
She still has her faith, though it's been melted, molded and remixed.
She still has the memories of growing up in New Jersey with a father who had little love to share with the children he had with the wife he mourned the loss of.
She still knows exactly what it feels like to be a young wife and have to leave your family behind and move in with your in laws - and she'll warn you against it early and often, if you ask her.
She can still imagine what would've happened if her first child hadn't been born when she was so young, or if her last child hadn't have come so much later.
She knows - more than most people - what it's like to live through loss, and that there's no escaping it, no matter how you try.
She knows to take what she can get, and to be happy for what she has, but that doesn't mean she doesn't wish for more.



It's an odd realization, that moment when you recognize that your parents or your grandparents are actually people, and not just who they are in relation to you. I'm pretty sure I was about 12 the first time I realized my mother had a whole life before I was born, and it was about 2-3 years later as my grandmother and I were trading books back and forth between us, that it suddenly occurred to me that she probably didn't just skip right over the love scenes. Suddenly embarrassed, I found it almost impossible to pass my books along - there were naked people in these books! And they were having sex! And... talking about it!!! She's my GRANDMOTHER (ALL CAPS!)))

I mentioned it to my mother, who found my embarrassment hilarious, of course, and shared the thought with Grandmother while we were having tea one day. (Both of my grandmothers have always been big tea people.) And Grandmother just laughed and said "NTE, I have 9 children... where did you think they all came from? You think there's something new in those books?" And they laughed as I turned what I can only assume was a very rosy red color.

It was one of those things that clicked in for me, though: Grandmother is an actual person, and she's had sex, she's had good jobs and bad jobs, she's gone on vacations - she's just a person. And I became really interested in her life, and connected to her in a way that we hadn't been able to connect before. I wanted to know, and I started to really listen, and it is as simple as that.

It's strange to me, to be coming up on thirty, to realize that age doesn't change us by default. I've gotten older without acknowledging it, really... and the number hardly ever tallies up to how I am feeling: Most days I feel like I'm the 91 year old, as everyone else runs circles around me, and live the lives I want but can't have... But my brain could be 12, or 21, or 63, depending on the time of day, weather, what I'm wearing.

So, while my grandmother may have turned 91 today, I'd have to say she spent part of the day as a teenager, another part as a doting mother; some reliving her times as a newlywed and some remembering just how many people she'd lost during all of those years. But since some of the day was set aside for acting like any other woman in the presence of those she loves, I hope that made her feel as young as she seemed.

Ta for now, bloggy buddies, it's lights out for this tired chica. I'm going to just lay down for a bit, see if I can't pretend I'm 12 and invincible again. It's worth a shot, right?

The difference a year makes -

Here's the kiddos at our library trip last June -




and here they are this June -



(Contrary to the whole "I"m lounging around and falling asleep" vibe in this picture, we actually came home with about 10 books, and have read them all at least once in the past 3 weeks.)

So that's My Best Shot Monday for this week, I'm looking forward to checking out all of yours.

An outing, a book review, a little bit more

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

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

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

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

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

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

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

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

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

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

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

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

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

Right Now...

Right now, I am sitting in my air conditioned room, watching the wind ruffle the trees across the street, waiting for the promised storm to finally let loose and cool us all down.

Right now, I'm loving how half of the sky is gray and the other half looks almost painted on, it's so blended and pastel-y. (Totally made that word up, I'm pretty sure.)

Right now, I'm taking deep breaths for the first time in many, many days (short story long? Stupid PUS. Ants. Ant spray. Am finally back in my own room.), and hoping that I'll be able to open the window to take a deep breath before the night is over.

Right now I've shut the TV off, pulled the blind up as far as it can go, and turned the A/C down as low as it can go.

Right now I feel like all I've been doing lately is waiting - waiting for better days, waiting to feel happy, waiting till we know where we're going and when we're going. And I hate waiting. For me, that first, slow climb up to the top of the roller coaster was always the worst part: the clicking of the wheels on the track was echoed in my stomach, suddenly an empty cavernous hole. Panic would set in and every inch forward just proved to me that I was too stupid to be allowed to make choices for myself, that I should never have gotten on this ride in the first place, that everything I knew about ride safety and physics was wrong, that I would, of course, be that one person whose grisly tale would be retold on the evening news.

In a lot of ways, waiting isn't really the hardest part: I'd rather be waiting to find out something bad had happened than to be sure of it. I'd wait forever if it meant I would never get some pieces of news; I'll wait till I day before I let someone tell me I'm never going to get any healthier.

But even knowing that I could be doing worse things than waiting, it doesn't make it any easier to wait, I'm afraid.

So right now, as I'm watching the clouds rip open and the sky light up, I'm thinking of how good it would be to just know something. To just have something to be sure of... instead of waiting.

Never let it be said that I don't keep my promises...

when I can.

So, here's some of the Getting Ready batch:

(I wish I had the professional pix, but I still don't... SisterJ is being flimsy with the sharing here, cuz she wants to make sure people see them with her first.)

So: Here's SisterJ at midnight, first picture on her actual wedding day.


And then SisterCh, protecting her hair (did you know "Up-dos stick better to dirty hair?" It's just one of the interesting things I've learned from this wedding), as she finally gets into the shower.


SisterK's hair looked like those ribbon candies, after it was all curled. I was jealous.




And petrified that I'd have to go with like a ponytail, because with an hour left to the wedding, Naomi, the woman who came to do our hair, still had 3 people left, including me. I kept trying to do the "As long as the bride looks good it'll be fine" mantra, but I was freaking out a little inside. Luckily, she zipped right through us final three. :sigh:

Here's 3/5 sisters getting what they could of their make-up on:



SisterJ is the one who knows how to do make-up and stuff. Which kinda sucked for her, as the bride spend some of her day putting on other people's make-up, but she seemed ok with it, since we all came out fancy-dancy.




Which isn't to say that she didn't get pampered a bit too:




Here she is hugging the Best Man, Kev's cousin, who dropped off a little note and present from the groom:


Which were some dazzling diamond & pearl earrings...



and you'll see just how gorgeous they look on, in the next little piece of this.

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!