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?

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.