Tuesday, April 30, 2013

Tweets I wrote but didn't send

Watching Little Women and pretty pissed off that I'm Beth instead of Jo, like I thought I would be when I grew up. #lies

Sometimes it feels like my whole life is Emma Thompson's Joni Mitchell scene in Love, Actually.

1/2 I would like it if people would remember I am a grown-up, and stop trying to take me to task over things.  Especially when those things fall under the purview of "not my responsibility",

2/2 "I don't answer to you" or "You don't have the right to speak to me that way".  That'd be really nice.

Should I tempt trolls by engaging popular tweeter about abelist use of "lame," or save spoons for, you know, eating? #mmfood

Note to Self: it is a bad idea to haunt google maps of your old house from '07, just bc you miss who was alive inside the walls then

Friday, April 19, 2013

Unthinkable, really, what's been happening here.

















Saturday, April 06, 2013

My Letter to the FDA

It's taken me a while to figure out what, exactly I wanted to say in my comment to you about Chronic Fatigue Syndrome & Myalgic Encephalomyelitis: in the 18 years I've been dealing with this illness, I've written many letters, blog posts, and rants; had a million discussions; banged my head against a thousand bureaucratic walls; spoken to my congressmen & my doctors, my family, other people's families, and a generally disbelieving public about this disease with it’s stupid name that changes your life forever.  I don't know if I've ever said the RIGHT words, if I've ever come up with the PERFECT explanation, but I do know this - I don't stop trying, because I don't have a choice. 

So that's what I'll say to you, government workers who are supposed to be helping all of us out here who are suffering from this heartbreaking, misnomer-ed & misunderstood disease: don't stop trying, because you shouldn't have the choice, either.  Chronic Fatigue Syndrome is a serious, debilitating, complex jumble of an illness - nobody understands that better than us patients.  It must be truly frustrating to the medical professionals who are tasked with developing the protocols, the drugs, the treatments, the diagnostic tools, the help we so desperately require, to be faced with an illness as complicated and difficult to nail down as CFS. I can only encourage you to think what it is like to live with such a disease, and hope that that spurs you to work harder, more diligently, more intensely. 

This is a disease that a lot of people still don't believe in: I don't have the luxury of not believing in it - I'd love to be able to dismiss my symptoms with a fairy tale-like ending simply by stating "but I don't believe in you..." But then I’d try to stand up and pass out again, so my fairy tale bubble would pop.  People don't believe in it because there's nothing to X-ray or blood test for (as of yet) and so doctors don't take it seriously.  Doctors don't have to take it seriously because our government doesn't take us seriously, doesn't devote the necessary time, energy, and resources into finding out what the hell is happening to us, how we stop it, treat it, improve it.  No, this is a disease where you get a diagnosis, and are quickly shown the door, left to figure things out on your own.

That's not the way it should be, and you're the people who can change that.  Please: take this seriously.  Please: know that there are patients out here DYING from this, living with this, suffering through their every day with this, and that We Need Your Help.  Please: do your job, and help us. Don't let this be yet another example of how you've left us to fend for ourselves.

Sincerely, etc.


I meant to post this earlier in the week, but spoons ran out, and so I didn't write it till today.  You still have till midnight on Monday, April 8th to comment to the FDA about CFS/ME.  There's a great post by Erica here at CFS Treatment Blog on how to do it, and why it's so important. 

Wednesday, April 03, 2013

A tiny update on some not so tiny kiddos

It's been a while since you've since some of my littles, and you would not believe how they've grown.  I wish I had a group photo I could post of the whole lot of them - they're multiplying and growing more quickly than seems normal to me.

Honestly: No Longer Youngest Nephew/Neph2's voice is changing... Cracking in mid sentence so that he looks as confused as the rest of us...it's scary.  He's turning 13 in less than a month (which he informs me of on a fairly regular basis), and is all about hockey and baseball right now.  Which is better than being all about girls, so I'll take it, even if I couldn't care less about either of those two things.

Oldest Nephew should be trying for his license soon and posted a picture on Instagram of the girl he asked to the Junior Prom. (Remember that bit I said yesterday about someone whose diapers I changed having babies of their own and the unreality of that all?  Well I was a junior in high school when Oldest Nephew was born, so that's officially just wrong.  ALL KINDS OF WRONG.)  I was super sick and missed out on my Junior prom, while SisterS was pregnant with Oldest Nephew, and she called me a couple of days later to commiserate.  So yeah: Officially weird and NOT RIGHT.

Lil Girl has always thought (and acted) like she was a teenager anyways, but now she's going to be seven next month, and seven is... no longer little, at least not in my mind.  You can't pretend a 7-year-old is a little kid - they're right on the cusp of knowing stuff that little kids don't know, right on the edge of figuring out ways the world works that you wish you could protect them from.  She's wise and not always kind (which we're working on) and sassy as all hell, but also sometimes the sweetest thing on two feet.

 And Baby B is a big boy now, preparing for preschool and such, which is also... not right?  He's the only baby that's been born into our family that I feel like I didn't get a chance to bond with before school started, and that's too bad... hopefully, as he gets older, his mother will bring him down more often.

And SisterCh's Boys - who don't even have proper blog names, I don't think, but have been seen here before: I should Blog Christen them, right, before too long?  It's already been so long,  I don't even know how that happened.  So NephewJ and NephewT (because the numbers just don't work anymore, but I can't go back and undo them) are growing by leaps and bounds as well... one is all over Facebook and skating and guitar playing, the other is into the Marvel Universe and may have been converted to the Dark Side (of always wanting to play games) when Mom and I introduced him to War over Christmas break ;).

And, come the fall, we'll have another Baby (Sex as yet unknown) to add to the our ever-growing clan.  It's really exciting to be one of the lucky auntie's to this rag-tag bunch... my brother and sisters have the coolest little people, and I'm looking forward to all the new additions as they come. 

Also: Note to self: when the kiddos are down for Spring Break, take group photo, cuz the last one was nearly 3 years ago, and that's just pathetic, y'all.

Also, also: interesting postscript - I don't think I quite realized how much the gender tables have turned in this generation of our family: in my dad's generation it was 7 boys, 2 girls; in my siblings & my generation, girls outnumbered the boys by 2:1 ratio (generally, each of my uncles and my dad had a boy and then at least two girls... any other kids that followed were also girls); but this generation in our family seems to be a complete turn around.  Interesting (probably to nobody but me and the few cousins I can chat about genealogy with), but we'll have to see how the pattern evolves as my younger sisters start their families.  (And if I ever get around to it.) 

Tuesday, April 02, 2013


The big news around here is that SisterCh is expecting her first baby in the fall - this is very exciting, not just for Woo Hoo, Baby! reasons, but also because she's been trying for a while, and I know she was super worried about whether it would ever happen at all. While I could not be happier for her, I will admit to also having some very complicated feelings around the whole situation.

First off, I'm super excited, as I said. She's a great step-mom to her husband's two boys, and I know she's going to be a great mama to a new baby, even if I really can't comprehend the idea of someone whose diapers I changed physically being pregnant. (This is probably something I will never comprehend.) I'm happy for her, because she was so worried about not getting pregnant, and fearful that maybe that would be a permanent problem. (Even though she has just turned 27, and we all tried to tell her she had plenty of time, that is not helpful if you are in the middle of the worry. It just isn't.)

But besides being excited and pleased, and more than a little eager to see how she copes with a newborn who is not a cat, I am also full of lesser and more shameful emotions for myself. I'm jealous, as I am now when anyone - or as it seems lately, everyone - in my sphere announces they're expecting. That's not something I'm proud of, but I'm also not particularly ashamed of it, since A)it's not the feeling that comes first or strongest and B) why the hell shouldn't I envy people who are experiencing things I want to experience? Should I be pleased that I'm seeing the PT instead of the OB? Because I'm not. To pretend otherwise seems ridiculous.

Which doesn't mean I shout and vent about my jealousy anytime someone with a baby bump approaches me - I have one or two select people who I can rant to about the seeming inequality of someone having triplets, but for the most part, it's happy face ahoy! It's weird, that you can be so excited for someone else, and so disappointed for yourself at exactly the same moment, but it's true.

But there are other issues surrounding SisterCh's pregnancy that keep all the feels creeping up on me. She was recently laid off, and didn't tell me about it. In fact, she continued to act like she would be going to work without straight up coming out and lying to my face about it. When I found out from someone else, I was confused. Then another sister said something about "Well she was embarrassed. And this house isn't exactly good at being positive about things." Which was like: OK. Well. I'll be over here in the corner, positively digging the pieces of this little dagger out of my heart.

 It doesn't seem like a lot, that sentence there, but the whole hiding it and then finding out that the reason she didn't tell us (she kept it from my parents as well, and I don't know if I was the main offender in the "less positive" rationale or a non-able-to-keep-secrets-bystander) was because we're negative about shit - it was an unexpected slap, I guess.

Because I try so hard to be positive that sometimes I feel like I should buy little pom poms and carry them around with me. I feel like I am the cheerleader for every freaking body in this family, all the fucking time! (And wow: this post sounds super cheerleader-y, NTE! Great evidence, all this ranting and raving about happy news.Well, no; but I'm not talking to them, I'm talking to you.) It was like a literal blow to me, sitting there at the table over Easter dinner, because I'm the one who says "You can do this" when nobody else shows up. I'm the one who sends cards that say "This day sucks, and yesterday sucked, but tomorrow might not, so let's find out together." I'm the one who knows you ain't going back to school this time either, but I'll spend three days tracking down the financial aid forms I helped you fill out last time - without rolling my eyes, even, because you need someone to be on your side.  I'm the one who tries so hard to find peaceful solutions in the midst of what seems like a perpetual family tornado, and it was like... wow, so, I guess a) nobody else thinks that I do that and b) why the hell have I been trying so hard for so long, then?

I'm not saying that I'm never negative - Hell, all you have to do is read two posts here to see that isn't true - but, for the most part, I'm negative about Me. I can literally think of only two things in my family that I am consistently negative about that other people are not - my dad (which I feel like I have to be, because I'm the only person who doesn't immediately forgive him for things that are not immediately forgivable, and because I feel like I have 33 years of evidence for believing the worst, plus I am the only one still living here - it is easy to say "let it go" when you don't have to live with it everyday) and my health (which, ditto: I'm the one living with it and all your cheery assessments and 'vinegar cures' in the world are only going to make me want to punch you).

But my family?  Is super negative about a lot of things, just in general - we're a sarcastic lot, by and large; we all make digs about things that happened 17 years ago (I just happen to have the best memory); we all shuffle and sigh when someone tells us they're going to change something we know they have no intention of changing; we'd all rather take a nap than take a walk - but that's just us.
I don't feel like I am a spectacularly negative person, and I feel like I make an extraordinary effort (on an almost daily basis) not to be negative - some people are naturally cheery and optimistic: I am not, and yet I try to be.

So I'm not Little Miss Sunshine, surely, but I do feel like someone you can depend on when things are falling apart, and to find out that at least two of my sisters don't exactly agree with me about that, it really hurt. I still just... can't.

Ok, there's more to this, but it was all sounding very martyr-y, and I am no martyr.  I just ... well it stung, and it was surprising, and it made me feel super unappreciated.  Which sucks.  But I think I'm maybe taking an off-hand comment really personally, and I'm going to try to let it go.  I like being the family cheerleader... I like it when other people are the cheerleaders too, so it doesn't feel like it's something that sits solely on my shoulders.  I realize that that is a responsibility I've given myself, and that I'm really upset by the idea that people can't come to me when they're in trouble because I know that sometimes they just can't.  It is a fundamental flaw in living a life with chronic illnesses - sometimes you are forced out of the loop, into unplug, back into your cocoon.  So I should be glad that they have each other to rely on, and I am.  I guess it's just another - less expected - place of jealousy.

So there you have it: a couple of late-night, green-eyed confessions that make me feel both ridiculous and full of myself - I'm jealous of all the baby-having that does include me (even while I'm totally on board with the additional Auntie-ing that comes along with it), and I'm mad that people don't think I'm supportive enough that they can tell me things and depend on me when the chips are down.  It sort of seems like those two things might be two sides of the same coin?  Maybe I'm not as good at being a cheerleader as I'd like to be.  I know I'm not, since I'm hardly ever rooting for myself, which is a big problem.

Now that I've babbled it all out here, looks like a) my cheerleading skills are not as shiny as I hoped they were; b) everything else is about me feeling left out/left behind.  And that's a sucky feeling.  Gotta work on moving somewhere, anywhere, just so long as I'm not stalled here anymore. 

For tonight, though, I'm off to bed.  Night all. 

*The Perks of Being a Wallflower

Monday, April 01, 2013

Not an April Fool's Joke

Can we talk?  I know we can: it's why I haven't shuttered this whole place down, even though it has been awfully ghost town-ish lately.  As usual, the less I am saying here, the more cluttered up my thinking becomes, the harder it gets to say anything at all, the more thoughts bounce around in my brain, and the vicious cycle continues.  There's a lot I'm not saying to anybody - not even to myself - lately, and that's got to stop. So I'm going to plug back in here, see if sweeping some of this stuff out into the open doesn't help me free up some space in my skull for quiet and peacefulness.  It's a hope, anyways.

First off, how was everybody's Easter?  Ours was good; no high drama or hysterics, just two kids with too much sugar and seven adults with not nearly enough - By the time all the grown-ups were looking to nap, the kids were plowing through their Easter baskets out of sheer boredom, and when we finally corralled enough people into playing a game, it was a sloppy, silly mess.  It's a good thing Catchphrase doesn't require a lot of firing brain cells or strict compliance. 

Speaking of compliance: I have to get a handle on my low-carb diet, which, since September, has taken a real beating.  All the weight I lost last summer has meandered back on, which I'm not as happy about as I was about it meandering off.  But more importantly, my liver and diabetes numbers are in trouble again and need refixing.  Self-care, NTE: you need to practice it.  So, I'm off for breakfast (which I find hard to do low-carb, since I don't eat eggs), and I'll be back before you know it. 

Ok; good start.  Random & short, just like always :)  Talk to you soon!