We may be overdoing it a bit...

Since I've been lucky enough to be an Auntie, as far back as Oldest Nephew (who just turned 12!), one of my favorite things to do with our kiddos has been introducing them to things I love. Getting to expose them to the joys of reading or poetry; to watch their faces when a science experiment goes off without a hitch; to let them use the expensive stickers and see the pride they have in what they've created - it's just one of the best things in my life.

When it comes to TV & movies, I've been lucky enough to hook Youngest Nephew on Indiana Jones & the Dinosaurs TV show, to scare Oldest Nephew with a great white shark, and to re experience the joys (and cringe at some of the realities, but that's another post) of the Disney universe through the eyes of all three of them.

Lil Girl is only here 2 days a week right now, but she's been slowly shortening the amount of time she'll nap, little by little every other week or so, leaving us with a nice chunk of morning time to do something restful and quiet like watching a movie. The rule is one movie, or one hour of TV, total for the day, which Lil Girl doesn't like at all, as the TV is constantly on at her house, but I can't use it as background noise like they do, because background noise makes me want to claw my ears off.

During the past few weeks, we've been slowly working our way through our Disney catalogue, starting with Ariel because she's got an old Ariel figurine that used to be SisterCh's. We went from Ariel to Cinderella, bounced over to Peter Pan & Aladdin, did a little Monster's Inc. (I forgot how cute Boo is!) & Toy Story; sat through the beginning of 101 Dalmatians 3 times, and, most recently, dug out Beauty and the Beast from its hiding place. We also have a ton of Disney books, so she's read a lot of the stories, even if she hasn't seen them on screen yet.



But, while playing with some more of those old action figures this week, I got a little hint that we may be bombarding her with a few too many story lines.


She had her Aladdin figure in one hand and I asked her what happened if I rubbed on his magic lamp.

Apparently, when you rub Aladdin's lamp, a "Crocodile comes out and eats off your hand, like Captain Hook."

Not exactly the Genie I was hoping for, but thanks for the fair warning, kiddo.

This is My Best Shot Monday post, head on over to Mother May I for a bunch more.

I broke a mirror the other day,

and still haven't decided if I am superstitious enough to really care. (Although I guess that's my answer: mostly, I figure I don't recall breaking enough mirrors in early childhood to have lasted me this long already, and so one more can't really hurt.)

But Lil Bit was here (and the reason the mirror broke, as it was save that or save her), and I had to quickly scoop up the pieces and get them in the trash. But now I kind of wish I hadn't... all those spiderwebby cracks to nowhere, all those refractions and angles of light: it would've made for some great pictures. I wonder if it's worth the additional 7 years to just find one and take a hammer to it?

Anybody else having issues with Bloglines?

I've got a ton of those annoying red exclamation points, and blogs that I know have new posts are not showing up as updated... hmm... curiouser and curiouser. Just wondering if it's me and my stupid computer, or if it's them.

Happy Thanksgiving to my Canadian friends, by the by. Since it's, you know, 3 in the morning, that's about all the fabulousness I've got in me... it's kinda sad.

Anyways... let me know if your bloglines is screwing with you too, will you? Appreciate it.

Me too.

Some days, Lil Girl and I seem to wear each other out more than normal: everything I say bounces around her as if it were no more important to her than the traffic report, her energy level is high to manic, and her chosen activities are randomly designed for maximum mess and noise, minimum actual enjoyment. Napping is for suckers, eating is for babies: of which she is NOT ONE!!, and clothes are made for changing in and out of. For my part, there are just days that are worse healthwise, energywise, pain wise. Unfortunately, we managed to combine a bunch of our issues together last week, and had a heck of a day. Lil Girl has learned to say "I hate..." (which I totally fell into the trap of paying attention to, and now have to work harder to ignore, because if I pay attention she just says it all the more, like a curse), and she spent a lot of the day grumbling about everything from books to baths (she couldn't find one, and didn't want the other). Both of us seemed to be losing the last vestiges of our patience, and so I decided, since it was still nice enough out and the sun was going down: "Let's talk a little walk."

Our walks are short and sweet: we head to the end of our block, cross the big street and head back towards the house. We stop in front of the church for some running around space, and because the kids like to climb the stairs or walk the balance beam (depending on which other adults are with us, obviously). Lil Girl took Grammy's hand, then let it go. She had us "freeze" on command and forgot to reciprocate. But the fresh air was doing us all good, it was relaxing and something different than being stuck in the house all day. This is the picture I managed to get before the little one decided she'd had enough and wanted to go play Care Bears (again).... I think it says a lot about how our day went.



I understand exactly, sweetie. I'm soo there with you. Tomorrow will be better.

Don't forget to go on over to Mother May I for some more Best Shot Mondays.

Hey, if I wrote it on time,

even ahead of time, that counts, right? So, here's my blog-oversary post, a week (or two) late.
-------------------------------------------------------------------------------------

If you can believe it, my blog is 3 years old! I'm as surprised as you are (if only because it means this laptop that has given me sooo many problems is 3 1/2 and I ready to throw it out the window already). My very first post was a mess and a half, through no fault of my own, and hopefully things have improved since then.

It's been a busy three years, as far as my computer skills go: I've learned basic - maybe even a quarter of a step above basic - html, designed my own masthead (which I want to change again), & blogged 30 days in a row, two years in a row. I still don't understand half of what my statcounter is purporting to tell me, but I did figure out how to tell how everybody is getting here, which has been enjoyable. I also figured out how to post pictures - and a flickr badge! - and found some amazing blogs to help me learn how to take better pictures.

I've done some memes, been most pleasantly surprised to receive an award or two, and been included in a few carnivals, and some time in the near future I'm going to guest post on someone else's blog for the first time! It's all been so exciting, so important to me.

I'm exceptionally proud of the work I've done for Blogging Against Disabilism Day, CFIDS & FM awareness, and my ability to randomly proclaim things.

Looking back, I'd certainly rather have had less PUS posts (as I would certainly rather have less PUS, but as we get going towards finding a new place to live, that is a goal much closer within reach, thankfully); I know there are times when I need a blogging break, and that it's cost me some readers over the years; I wish I was better at remembering I've started a draft and actually finishing it (72! 72 Drafts?? C'mon, NTE, you can do better); and I know there are some things that need tweaking (like the color of the hyperlink text, which is nearly identical to the regular text), but overall, I'm just so glad to have this place, this space to be me. To think aloud and have these discussions with all of you.

And I'm more grateful than I can say that you come by, comment, and care.

Thank you, so, so much.

Books I've read (today) and now you must too

After a particularly crappy few days, there is nothing better than reading a good book (or two, or three...)
A phone call that cost me $300 and a computer that refuses to load AOL (I know: but I've been on AOL since 1997. Also, I have 6500 emails in my saved folder. I keep promising myself as soon as I clean that out I can switch to something else. But I haven't yet.) started my day off not so fabulously.

But then I galloped & scurried my way through two excellent childrens books, and now my mood is much improved.

First I picked up Clementine by Sara Pennypacker, which arrived only yesterday, and was, therefore, the handiest book in the room. As soon as I read this dedication by the illustrator, Marla Frazee, I knew I was in for a treat: "To my big brother, Mark Frazee, who thinks I'm an idiot." C'mon now - if that doesn't make you laugh, then you are an only child.

Clementine reminds me of all the books I read when I was in fourth grade: The Ingalls girls, the Babysitters that never seemed to do much babysitting, even some of those dopey R. L. Stine heroines. Most of all, she reminded me of Ramona Quimby, a personal favorite of mine, who never seemed to realize she was heading for trouble in time to stop, and who made everyday seem exciting, even if she just wound up getting punished, because at least she'd done something worth getting punished over. In that way, Clementine and Ramona would have been best friends, had their two book worlds ever collided.

Everyone around her seems to think that Clementine's problem is that she doesn't pay attention, but the real problem is that nobody else is paying as much attention as she is. She pays attention to every.little.thing, but it never seems to be the things she's supposed to be paying attention to. The book covers one week in Clementine's life - although I just found out there are two additional books in the series, so yay! - and if this one week is anything to go by, Clementine my just be the most exciting person to be near, ever.

Best of all though? She's hilarious. You know me, if a book is funny, I will read it. Even if the plot is slow or meanders, even if the action is weak or the heroine is to meek and mild, I will read it just for the funny. Fortunately, this book has a strong plot, a fabulous heroine, great supporting characters (including a best friend with strict rules, two loving, caring parents, and a little brother who needs a vegetable name - which Clementine is, of course, happy to provide), and awesome illustrations. Most of all though, it's got the funny. I will give you a sample of some of Clementine's words of wisdom, because I know that some of you don't understand that reading childrens books is not just for children, and I may have to coax you into it a little bit. We've had this argument before, people, (see Harry Potter Posts) but I am willing to continue until I convince you.

"But I couldn't tell them this, because an important part of pretending to be asleep is not talking."

"But I didn't spin him again, because he throws up on the second ride and somebody has to clean it up which is N-O-T, not me. This is called Being Responsible."

"She scrubbed so hard she probably made a hole right through my head skin and my head bone, and now everybody can see right into my brains and I'd better not do any more cartwheels."

and my favorite, although a bit longer, is this interaction between Clementine and her principal:

"I can't help it," I said, before she could start the little chat. "I'm allergic to sitting still."

"Nobody is allergic to sitting still, Clementine," she said.

"I am," I said. "My brother is allergic to peanuts. If he eats one he gets all itchy and swelled up and he can't breathe right. If I try to sit still I get all itchy and swelled up and I can't breathe right. So that means I'm allergic to sitting still."

Mrs. Rice squeezed her eyes shut and rubbed her forehead. I happen to know this means This idea is so bad it's giving me a headache, because it's the face I make when my mother tells me to visit Mrs. Jacobi. The face never works for me."


Hilarious, no? There's nothing better than when a character thinks like you think, and Clementine could've been hatched in my 8-yr-old brain (I know this because I still often think that way).

The second book I picked up, oh 2 years ago? and finally read this morning because I know they're making a movie out of it and if I see the movie first, it'll ruin the book for me. (The inverse is not true, however: don't ask me why.) The Tale of Despereaux is a book about the power of stories, the power of love and the power of soup.

The main character, Desperaux, is a mouse of small stature, few mouse-like instincts, and very little importance in his family or community. He does not behave as a mouse should, he does not look like a mouse should, and he does not know why he should want to do either of those things. Instead of nibbling on books, he reads them. Instead of cowering from noise, he explores it. Instead of fearing humans, he falls in love with one. And that is where his story intersects with those of a princess, a serving girl, and a rat whose broken heart mended incorrectly.

It's full of action and adventure, plot twists and poignancy. I can't imagine that a reader - be they 8 (like Youngest Nephew who will be getting this book for Christmas) or 28 (which is close enough to how old I am) - would walk away unsatisfied by this book. It's about interconnectedness, bravery, and what it means to be true to yourself, but it's about all of those things without being preachy or heavy handed, and remains entertaining from beginning to end.

So there are two, not exactly brand new, recommendations for childrens books you should read. There are very few people who can't use a good dose of what good childrens literature can provide: a laugh, a little compassion, empathy, & understanding; conflicts and conflict resolutions; engaging characters, smart dialogue; and best of all they're QUICK and Easy to Read. So pick up a book, marketed to children, today. Because there's a lot of great stuff out there, and if you just pass by it thinking "that's for kids", you're really missing out.

Besides, if you happen to have kids in your life, you can always tell yourself that you're reading it before you pass it on to them to make sure it's appropriate. Which, you should always do! Because a) some things are not appropriate for your particular child and b) if you know what your kid is reading than you can talk about it together, which is just a fabulous thing. The only thing better than reading a great book is sharing that great book with somebody else: I promise.

A little bit of linkage

I am attempting to catch up with... well, everything. So here's some links I've come across today that I think you should check out.

A powerful essay about LM Montgomery's depression, written by her granddaughter. Click Here Particularly poignant:

The recent Globe and Mail series certainly sheds an encouraging light on the notion of the “perfect” family, acknowledging that it may include the reality of depression and other mental illness, and suggests that the shame surrounding these subjects may be lifting.

I'll never know if my grandmother might have been inclined to seek help if she had lived in a less judgmental era or if she had had access to supportive therapy or the medications available today. I would like to think so.

I long to tell her how I wish her family could have known how to help her and how proud we all are of her accomplishments.


A very scary ad from Found in Mom's Basement, a vintage advertising blog.

This post over at Joy Unexpected, where Y writes:

What I AM saying is that I was horribly wrong to buy into the lie that I'm not deserving of love and happiness because I'm fat.

Change that to "fat and sick." Or keep it as fat, or change it to just "sick," or any combination of the two, and you'll see some of my truth, spoken by someone else. So I guess that makes it our truth, which is one of the things I love most about blogs. Because seeing your truth through somebody else's eyes makes it a little bit easier to deal with, if you ask me.


Just some random stuff I wanted to pass along.

A little light

One of the things I'm rediscovering, during this strange period of my life that I can't really understand, let alone explain... is how much I love poetry.

You see, I've always loved to read, ever since I started reading. I've read shampoo bottles in the tub, cereal boxes at the breakfast table. I read in the car to keep from getting car sick, I read while I was walking (to the detriment of those around me) because the walk was too boring. I read the entire (skipping things I couldn't have cared less about) Encyclopedia Americana set from 1980 that lives in our living room, just to see if I could. I read the dictionary... aloud. When I was 12. I've always read a wide variety - "boy" books and "girl" books (although I contend there are no such things,) "kids" books, "young adult" books, and "adult" books; fiction, non-fiction; fun and fascinating, scary and serious, all genres & forms welcome.

But sometimes I go through these periods where reading anything besides comforting, familiar authors is beyond what I have the strength and energy for. Because reading something powerful can be exhausting or invigorating, enlightening or lighthearted, but it always, always makes you feel. So there are times when feeling anything else is just beyond me, when it feels like every nerve ending in my body is just too exposed: Not just physically, cuz that's my everyday, but emotionally. It's all just too much.
Eventually, though, I come out of these slumps and I wonder why I stopped reading certain things.

Poetry is one of the first things I stop reading when I come to these times, and it's almost always the thing I miss the most. But I'm just not a person who can force themselves to read poems... poems are for savoring - you can gulp them or sip them, but if you're not enjoying them, you're doing it wrong. That's not the way poetry is taught - once you're out of middle school, anyways - but it's the way it should be taught. Learning the meaning behind the thing is great, but if you don't feel it, you won't care enough. It makes me cry thinking about all the dissection we did of poems in high school and college: instead of picking them apart, we should have been putting them together, trying to appreciate the whole package and wondering at the glory of each piece as we did so.

Poems, like picture books, are made for reading aloud: you need to hear the rhythm of the words, feel the way your tongue moves as you speak the words, hear the rumble in your chest as you weave your way through the lines, listen to the pauses at each period, question the comma placement or line ending as you take a breath.

Being back in a place where I can hear the poems, where I can feel them - even though a lot of other things are cloudy and scary - feels good.

I'm going to share a bit of that with you guys today, and whenever else I feel like it: Waaay back when, I used to post poems on Thursdays. I'm thinking of restarting that tradition, but I've got to find a day of the week that works for me now, so it may need some tweaking. For now, here's a poem to keep your Wednesday working.

I saw a Butterfly Today by Venos Tricon

I saw a butterfly today
Small and green with no wings
Crawling into shadows\hiding from a world who ignores it’s subtle beauty
Afraid to never be noticed…appreciated

I saw a butterfly today
Camouflaged and shielded in self-made walls
Neglecting the world of it’s gentle touch
Afraid to be met with a forceful hand

I saw a butterfly today
Wings new and fresh
Excited with exhilaration
Facing a world with new courage
Knowing it can not be harmed

I saw a butterfly today
Blue and gold streaked the sky
embracing the sunlight’s rays
Fluttering around my head
Carrying my heart on her flight

I saw a butterfly today

My Best Shot Monday

On a Monday and everything!

So I tried to get the kiddos to pose for pictures before Youngest Nephew went back to school and stopped coming on a weekly basis (wah!), and it was... interesting. I was remembering fondly how easy it used to be to take pictures of the Lil Girl... back when she stayed where I put her. No such thing, now, and who can blame her. BUT, I did manage to get a few, and wanted to show you a then and now of my chicklets:

Here's the pair in August of 06, when Lil Girl was barely 3 months old and her big brother was six, and here they are two weeks ago, Youngest Nephew at 8, Lil Girl at 2.

(And yes, I do occasionally make my bed, if it just so happened that we were washing the sheets on both of these days, well, it just makes the comparisons easier, right?)

Iconic Shot (1)
Originally uploaded by bbackprple

Iconic Shot 2
Originally uploaded by bbackprple

It's that time of year again

and I know you're all wicked excited! No, I'm not talking about back to school, or even the fabulous transition from summer to fall, but, of course, the fact that we're coming up on Heating Pad Weather!

See, I knew you were as excited as I am. Now, don't get me wrong, it's not as if I've ever stopped using the heating pads - that would be foolish and crazy! It's just that using a heating pad in the warmer (and hot as hell) weather makes you feel like... well, like a crazy fool. If it's the only thing that helps with your pain, you suffer through it, but there's nothing more uncomfortable to the rest of your damn self than sweating outrageously because your neck won't stop aching.

I do tend to do a lot more of the icing in the summer, and the heating in the winter. This is only logical, and contrary to popular opinion, getting my Master's Degree didn't educate all the common sense right outta me. But what works best for the worst pain, generally, is heat. A lot of it, I mean HOURS of it, as at high a temperature as possible. So that, I'm nice and numbed up (and my sensitive skin a veeery pink/red color) are the signs that optimal pain "relief" has been accomplished. And it's virtually impossible to accomplish those things when it's 85 degrees out.

So there's a lot of things about fall that I look forward to: the crispness in the air, the lack of flowery smells, the Halloween costumes yet undiscovered, but right now? I'm just glad I can reclaim my heating pads.


And, yes, I have a million things still to talk about, a million things going on here and IRL that I should say... something about, but in the meantime, and because if I don't write something, then I might not ever write anything, and I'm not ok with that.

The Star Wars Party Book: Recipes and Ideas for Galactic Occasions by Mikyla Bruder

My review

rating: 5 of 5 stars
Ok, the book itself isn't all that amazing, but getting my 8 year old nephew to plan menus, make a shopping list, decorate for a "fancy dinner" and then help cook and clean up? I'd give this a jillion stars. We're having our second annual Star Wars Dinner tomorrow, at his request, so it was definitely worth however much it cost. (Although, I'm pretty sure I got it at the UBS, so it probably didn't cost that much in the first place.)



The recipes are just... regular recipes with Star Wars names, but they're interestingly presented, and creative (Han Solo Hoagies, Rancor Snacks, Jabba's Juice). And the pictures of the action figures with the food are a great bonus, and provide that extra incentive for kids to move from just reading about it to doing it.



There's two other Star Wars cookbooks, and I might know a little boy who's getting them for Christmas.


View all my reviews.

You wanna know the truth?

I just haven't felt like it.

That's why I've been so quiet here lately... I just haven't felt like it. I'm a little bit in my shell these past few weeks: a bit of bad news here, an added responsibility there; a lame attempt to clean up some of the clutter in my room (and life); projects to finish and discoveries to make; a book that's scaring the shit out of me (and making me consider what I'm putting into my body and what I'm expecting out of it); doctors' offices to fight with (or ignore); mosquitoes to swat away, plagues to prevent; a little bit of time for reflection on the crappy year that's been, and the time that's yet to come; just stuff. Life and stuff.

And so, my brain says things like "You should blog this. Or at least write it down so you'll have something to blog when you get around to it," and another part of my brain goes "Nah." It's pretty obvious which part has been winning.

Also? It kind of got to the point where I just felt like I was complaining about the same things over and over again, sharing the same pictures over and over again, telling you ... nothing, really. And I don't want to blog like that.

So, I'm going to try to work it out. Whether that means I post more, or less, or whatever... I'm not sure yet. But we'll figure it out. I hope you stick around.

I'd miss you if you left.

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

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

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

Like I said... Curiouser, and curiouser.

Dear Boston -

What the hell are 'nettles' and why the hell am I just now learning I'm allergic to them?


Sincerely, Red-Eyed, Runny Nosed
NTE

PS: Internets, to find out what's making your eyes water, you can go to Pollen.com for a personalized allergen map.

I've been off ...

a bit this week. Who knows why? Brother and SisterN are on vacation, so the children's aren't here on Tuesday's and Thursdays, and my schedule is off, I suppose.

I've been worrying about a few tests the doc wants me to have, and obsessing about the fact that the schedule lady WILL NOT CALL ME BACK WITH THE APPOINTMENTS already! Seriously: I had the appt two weeks ago, when he told me to have one particular test, then I called Monday and Wednesday last week to talk to Zach, and then, after he finally got the message and called me back Wednesday night, I called on Friday, and again this Monday to have her make the appointment and call me back.

How do you not make a pest of yourself at such times? I fear calling over and over again, because I have nothing other to say than "Hi: It's NTE again, calling about the lumbar puncture?" At which point she quickly says "Right, I'll call you right back with that appointment." And then DOES NOT. I don't want to be a bitch, but, um... Hello? You're supposed to be doing this: it's your job. I'm never rude to you (although you have been to me in the past), and all I'm asking is that you make the appointment, and then tell me when it is... I'd do it myself, if I had the info-freakin-mation, but I do NOT, so please just help me out. (and get me this appointment before I chicken out .. I really don't want to have it, so let's get it over with already.)

This is one of those times that I wish I was a better health care consumer - I may have been dealing with chronic illness for about half my life at this point, but I still suck at being as assertive as I would like to/should be. It's a fine line, though, when you're dealing with doctors offices: I'm going to these people to have them stick a big needle in my back to collect fluid around my spine... I realize that it won't be the office person who'd do it, but ... still, you don't want to make enemies in doctor's offices. It's so weird how you can fear pissing these people off, because they're the ones who stand between you and the care you need. But since I hate talking on the phone in the first place, making this same phone call over and over and getting no help is making me nuts.

So there's that... but mostly, I'm just dragging. Draaaaaaaaaaggggging. And so, I've been trying to rest, read, and recharge a bit. Which, is kinda an oxymoron when it comes to people with CFIDS, but what cha gonna do?

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?