Friday Night Lite

Don't especially feel like writing tonight. Don't especially feel like doing anything but sitting in the rocking chair and wishing it was somehow powered by something other than me, because rocking seems like it would take too much energy.

So here's some stuff that other people I feel like sharing this week, just because.

On the subject of families and traditions:

“If you look deeply into the palm of your hand, you will see your parents and all generations of your ancestors. All of them are alive in this moment. Each is present in your body. You are the continuation of each of these people.” — Thich Nhat Hanh

Lifenut talks about Snoopy Thanksgiving at her house, and the importance of building traditions.

"You can’t begin a tradition without making some promises to tomorrow. Tradition implies a respect for the past and a dream of the future bright and open. It’s recognizing something good and wanting that same goodness for people they won’t meet for years ~ their children."

In the same vein, there's this Chuck & Beans comic, from the Hallmark Shoebox blog -

And... that's all I have got for you tonight, because I am dragging. Just plum worn out, from trying to accomplish regular things, like normal people, and getting about 1/1400th of what I wanted to do accomplished. :shrug: Must stop trying to make words work well together, because none of them even really make sense to me anymore. Nighty Night!

Why can't we unfriend?

Sometimes looking at the updated feed from my Facebook page is so cringe inducing that I can barely stand it.  Occupy Boston was a large 'offender' today - since they were holding up traffic and making people late for their football games and date nights, and God forbid some of the people on my friends list can't get their drinks immediately following the end of their work day.  I really only have two or three highly offensive friends - people whose politics and world views are so far afield from my own that I have trouble remembering why or how I ever liked them in the first place. The worst offender, by far, is my older brother's childhood best friend, who, previous to Facebook, I was not aware was a right-wing, "anti-PC" (meaning totally pro-any ism you can think of) windbag.  I only follow him so I can see pictures of his adorable children, although even that makes me think: "oh crap, those kids are going to be haters, later."  I even have a cousin who is on Facebook, and I am friends with his wife, but... I know that if I ever want to be able to speak to him in person again, it's better for both of us that we're not FB friends. 

Those two or three fanatically off the deep end friends though, they have friends, and usually, those people's comments are even worse, and I have to just deep breathe and press the little x.  Spraying the Occupy Boston crowd with bullets was suggested, as was that they all get jobs and stop wasting tax payers' money, and my favorite was the suggestion that it was "just an excuse so that the rapists and pedophiles can hang out and rape people and kids."  Yeah: I don't understand how I live in this country, and that there are people who think that protesters, who have specific (and, in my opinion legitimate) complaints about the way our country is run are the same as pedophiles or rapists.  Or that we should just line them up and execute them as a way of "thinning out the herd". 

Seriously? 

Do not comprehend.

Let's take a pretty realistic example: I do not (as previously discussed) find much/any value in the Tea Party movement.  I think it's run by corporations looking to avoid paying taxes or acting as responsible members of our society, and that most of the people (not all, but the majority) are not just ill intentioned, but ill informed.  That's my opinion, and I have a right to it.  When they were here protesting, which they've done numerous times, I have rolled my eyes at their comments, signs or behavior; laughed out loud, sometimes at the complete ignorance when it comes to the issues; and done my best to ignore their existence.  That's what you do - you complain on Facebook about the inconvenience of the rallies, or the lack of spell-check on the signs, or their unapologetic hypocrisy or display of privilege ("there's no such thing as racism anymore," I remember hearing that come out of some (obv. white) Tea Partier on the news a while back).  It's ridiculous, literally: worthy of ridicule, and so I feel free to ridicule away.

But I've never said - or thought, even - let's "mow them down, while they're all in one spot".  Or that, for sure, the Tea Party was just a cover for NAMBLA.  It's just not something that occurs to me, to be honest - the reality of the situation is bad enough, so why think of ways it could be worse.  I get being opposed to what a group of people are doing, and saying so, vociferously, wherever possible.  But when I see all of the vitriol directed at the protesters that many consider too liberal, I wonder a couple of things -

A) When did so many of my friends become friends with douchebags? 

B) Isn't it amazing that other people are so against a group that has done nothing besides say "Hey: we think this is broken?"  They have done nothing - which is part of the reason I am not 100% behind the movement, I feel like there needs to be some actions involved - and yet they are mistreated by the police, falsely portrayed by the press, largely forgotten by the public, and that's just accepted

and, sadly

C) Remember how naive I used to be about our society, and how we were all working toward a common goal?  That we had unalienable rights (not saying that being an asshat on Facebook is a violation of those rights, just that it reminds me of all the violations that nobody else seems to care about)?  That people weren't just mean for the sake of being mean?  Yeah... let's be 9 again, shall we?  I think I need a refresher course. 

Anyways, that long rant about Facebook and cretins, and of course the solution is very simple.  And topical, as it turns out, because today just happens to be National Unfriend Day, which I swear I didn't even know until I just heard this song on another blog (Synergy!)  So it's time to clear out some of the unwanted friend clutter, if you've got some.  Scumbag former acquaintances, who will never even notice that I'm not your friend anymore?  Adios. 

Lovely readers of my unusually curse-heavy today blog?  Please to enjoy this song, in honor of National Unfriend Day

American Censorship Day

If you've been on the Internet at all today, you might have seen something about American Censorship Day.  I first noticed it on Reddit,  and I didn't know what it was about, but as I spent more time wandering through the web, there were about fourteen petitions floating around, begging for signatures.  Honestly, it seemed pretty straightforward to me - the government and entertainment industry are looking for greater controls over the internet, the ability to shut down certain sites, should there be posts of copyrighted materials.  On the surface, I can see both sides to this - Copyrights are protected for a reason: the artists and business people who create films, music, art, etc, work hard and should reap the rewards of their crafts, to the largest extent possible.  On the other hand, letting the government, or a movie studio (for example) have the right to shut down, fine or punish an entire website for the postings of one user?  Seems like an extreme overreaction. 

I saw this video, and it made a lot of valid points I hadn't considered, regarding the economic ramifications of the bill(s):


PROTECT IP Act Breaks The Internet from Fight for the Future on Vimeo.


For myself, even though I respect that copyrights are important, my position (if I've understood what I've read and seen today correctly), is that this is a bill that should not pass.  This bill is way too strict (in terms of penalties), open-ended (in terms of who has the power, and what powers they would have), and doesn't really address all of the (or, honestly, any of the) concerns  I, as an internet user, have about systemic censorship.  So I signed a couple of petitions, and I'm going to see what I can do about calling my Congressmen tomorrow.  Because, even though I haven't heard of it before, this is something that's frightening to me: Giving corporations (even entertainment industry corporations) more power than they already have?  Not a fan.  Punishing all users as if they are monolithic entity?  Not a fan.  Limitless ability to ban websites with very little (or any, as far as I could see) oversight?  Not a fan. 

Censorship in America is so 18th century (if only); Let's keep it that way.

The text of the bill is here;  the Reddit thread I first heard about this from, and which shows that the websites of the bill's own co-sponsor would be in violation of the bill, should it pass, as well as a ton more information, including how to best contact your Congressperson, is here.  


Also, PS? The idea that the Washington Post says that Tea Party advocates are against these bills gave me more than a moment's pause.  I will freely admit that I do not want to be on the same side of just about anything as the Tea Party, since they are generally... the polar opposite of my every instinct.  So I took a little longer to research, after I read that, just in case I was missing something.  But no: They're worried about "business strangling power" that the government might have, if the bill is passed, so I guess, even though we have different reasonings behind it, there's a first time for everything.

I'm working on it...

Got a couple of more in-depth posts in the works, but in the meantime, I thought I'd report back on my no-roll pie crust experiment .  I threw it together with some frozen strawberries and blackberries, a little oatmeal/brown sugar crumble, and am eating it for dessert right now.  Grades are good - it's fairly sweet, but very flaky and hands down the easiest pie crust I've ever made.  I'm not sure how I'm going to adapt the blueberry pie, since that tends to require a top crust (and this would not be pretty enough for that, I don't think), but I'm definitely using it for Thanksgiving pies.  Thumbs up, for sure. 

If you're interested, the recipe I used is:

In a medium bowl, whisk together:

     1 1/2 c flour

     3/4 tsp salt

     2 Tbsp sugar

     1/8 tsp baking powder

With your fingers, work in:

     1/4 c (57g) frozen butter, grated

     1 Tbsp plain cream cheese, room temp

In a small bowl, whisk together:

     1/4 c oil

     2 Tbsp cold milk

Add the liquid to the larger bowl and mix with a fork until all the floury bits are wet.  It will be shaggy – that's okay.

Dump the dough into a pie dish and press it into the bottom and sides of the dish.  Try to get it as even as possible.  Freeze the dough in the dish while you prepare the filling, or for at least one hour before blind baking.

To blind bake, set the oven to 350F/175C and line the dough with foil.  Weigh the foil down with baking beans or uncooked rice (don't eat the rice afterwards) and bake for 10 minutes.  Remove the foil and weights and bake for a further 4-6 minutes uncovered, until golden brown.


And it was originally found here . The best part was the idea of grating the frozen butter, rather than trying to cut it, mix it, refreeze it, wait, then cut it up again.  Grating: why didn't I think of this sooner???    Anyways: Yum.  Off to finish dessert now. 

Patients For A Moment

Kathy, over at FibroDaze will be hosting the next Patients For A Moment blog carnival next week, and her topic -

"When you have made some sort of peace and are coping with the chronic illnesses you do have and “life” throws you curve balls in the form of a new diagnosis, how do you deal? What are your coping mechanisms? How do you come to terms with the new diagnosis?"

is, unfortunately right up my alley.

I'm currently trying to get a handle on at least two startling new diagnoses - That I am either diabetic or pre-diabetic (depending on when I take the stupid blood test), and that my gall bladder seems to want to attack me for no good reason at all.  (Which, unfortunately, makes it not all that unusual from any other organ or part of my body - "Reasons? We don't need no stinkin' reasons!")  I'm also undergoing some testing for an undiagnosed liver issue, which will bring my sum total of chronic conditions up to Way Too Damn Many + Infinity. 

All three of these new issues, plus an injury from a recent fall, have definitely thrown me - More than once I've thought to myself, "But I barely have a handle on everything I already knew was wrong, I don't know how to add these into the mix!"  And I won't sugarcoat it ~ So far, my main coping mechanism has been flat out denial:  I will deal with it by not dealing with it.  That is what I would like to do with each and every illness I happen to have ... I'd like to ignore it until it goes away.  Until it decides that I am no longer worth its time, energy, or effort, and just ... leaves.  But I also know that there is no way in hell this is going to happen.  I mean, it's not like I don't recognize that this isn't a great coping skill; it's just my fallback position. 

Still, denial can only last for so long (I hope), and eventually my brain turns back on, and I realize I have to do something.  I'd say I'm currently smack dab in the middle of this second phase of coming to terms with the newest issues that have been heaped onto my plate: Full out educational immersion.

Deep down, I'm a geek, a scholar, a nerd.  I live my life with the firm belief that there's just about nothing that can't be made better by reading about it - even when I'm upset, I'm curled up with a book, trying to connect to something that will make me feel better.  (The way I knew, all those years ago, that my depression wasn't just run of the mill sad/a tiny bit of malaise?  Was that I stopped being able to enjoy words - reading them, writing them, interacting with them... it was all suddenly bland and useless, and that's when I knew something was dreadfully wrong.)   So, faced with new challenges that I have no idea how I'm going to meet, I head to books, I head to the computer, I head to the library, and I start stuffing as many facts and theories and strategies into my brain as is humanly possible, in the hopes that something will make this easier. 

So far, I've done a done of reading up on diabetic food choices (not diets, because I am not good with diets, but choosing foods that will work better with my body's new issues), which is good, because the nutritionist they sent me to explained things like "you have to eat some vegetables every day" and "the way to figure out how many calories are in what you are eating is to read it right here on the box, let me show it to you", and was utterly useless in every single way.  I've researched what my blood glucose numbers might mean - again, thanks for all your not help, Nutrition Lady - and why the Hemoglobin A1c test that I took could have such varied results, and how I'm probably not diabetic, but I should try to address things before I become diabetic.

  I've looked up the gall-bladder (anatomy - who remembers where all those stupid organs are hiding?), and tried to make sense of the internet's explanations of how something that lives under your ribcage, down by your belly button (ish) can cause pain up behind your shoulder blade, because that is some real ridiculousness right there, human body, and it must be explained.   I've tried to figure out how to peacefully combine the gall-bladder attack prevention diet and the pre-diabetic food choices into a livable mealtime strategy.  (Have not succeeded, by the way, but am working on it.)  I've gone back to some of my favorite chronic illness blogs and looked for relatable, motivational & understanding words; Have reread a couple of books I find inspiring, in the hopes of prodding myself into taking next steps. 

I'm accumulating wisdom by the bucketloads, so that the next time I go to the doctor, I won't be so blindsided by what they're saying, and will hopefully be able to ask relevant questions and actually make progress on things.

It's not the final thing I have to do to make things run more smoothly again - at some point all of that theory and supposition will have to turn into action, and I am sort of dreading that step already - but it's still vital.  It's the 'getting my feet back under me' portion of adapting to change.  The process I have to go through to go from "Hell's no: this is not happening again!" to "Ok: it's happening, let's deal... I know I can pull this off!"   

Yes, I'm disappointed to find myself, 17 years later, under continued attack from so many various parts of my body.  Yes, I'm frustrated as hell that, instead of improving, things just seem to keep getting worse and worse, and that I still haven't gotten to the root of these illnesses, or figured out a way to get rid of them, or how to achieve all the things I want to achieve in my life.  It's beyond frustrating, so much so that when I went to the thesaurus just now to look up a stronger word, one that fit better, I couldn't find one.  It's all of them - upsetting, disheartening, prohibitive, discouraging, defeating, baffling, hindering, depleting - every synonym, all combined together and multiplied a few thousand times.  All of those words to the nth degree. 

But, when I find myself here, at a place that is both familiar and shockingly not, faced with new diagnoses all over again, at least this time I've got some idea of how to get further along down the line:  Stuff brain with as much as it can handle, take breaks in denial land as needed, and know that you can handle it, whatever comes.

I'll share what I like, where I like, Google: You're Not the Boss of Me.

I know I just talked about how much my internet was bothering me, you know, yesterday, but I've got another internet related complaint that I want to talk about today: The loss of Google Reader's like and share functions.  I didn't use the Share in Reader option too often, only for things I was exceptionally excited/depressed about, but I miss it just the same.  Mostly because I could follow other people, and their shares were usually amazing and awesome.  And I miss the ability to like things, because I could just press L when I liked something, and my reader would remember it for later, and I had all these requirements for starring something vs. liking it, and Google has messed all that shit up, because now I have to "S" all the things, and that's just not right. (Whatever: doesn't everybody sort their feeds into a million categories?)  

Google tells the detractors to the new Reader that there's a +1 button, and that it's almost exactly the same as share and/or like, but there's one big difference: In order to +1, I have to register for Google Buzz.  In order to register with Google Buzz (in my experience, and what I've been reading about other's on the web), you have to forgo any shot at internet anonymity.  In other words, I have to use my real name.  My Google Reader was just initials, and I was able to share stuff with two separate groups of people: People who knew me IRL and knew my initials, and I told them how to find my reader OR people who knew my G-Mail through this website and found me that way.  So I could share things with people, without sharing ME with people.

So I'm stuck with not sharing, and not liking, and so I came here to tell you that I don't like the un-liking and un-sharing.  It's stupid.  But, because this is my blog and I can put anything I want here, here are some things I would have liked or shared, over the past little while. 

This AMA Reddit thread, where my favorite astrophysicist, Neil deGrasse Tyson answers questions  (Which, technically did not come through my Reader, but my Reddit & Twitter accounts, but still: Is too much awesome not to share.)  Example of said awesome?  When asked about things that blow his mind:

2) That Quarks come only in pairs: If you try to separate two of them, the energy you sink into the system to accomplish this feat is exactly the energy to spontaneously create two more quarks – one to partner with each of those you pulled apart.  

How cool is that?  And how cool is it that I know that now, something about quarks?  I won't forget it either, which is why I heart Neil deGrasse Tyson: He makes science relevant and interesting.


 This post by the Smart Bitches, where they're asking for recommendations for books whose main characters have disabilities.  Because I am constantly reading these kinds of books, and want MOAR, and because the Bitchery manages not to drag out a lot of tropes that I can't stand (Magical Cures: No, Thank You), or, for the most part, calls out the tropes when they see them... Exception to this rule - some people there have recommended books by Catherine Anderson, because the heroines have disabilities.  While that is the truth, they are just... not good.  I refer you this recent Goodreads thread,  but also, just to common sense: the only thing these books are about is that the character is disabled.  So that's all the author has to talk about as far as those characters go.  She is "Girl in Wheelchair", "Blind Girl", "Deaf Girl" (and always girl, never woman); it is the sum total of her characterization, and the result is some horrible stuff.  Anyways, aside from that, a lot of good recommendations (I've read some, added some to my TBR, and will go back to mine it again.)  I can post some of the best, or links to my Goodreads reviews of them, if anybody's interested in some of the better ones. 

(And that last item reminds me that I haven't talked about the return of Barbara Gordon as Batgirl.  Which I am definitely going to do, as soon as I read the first three issues of Batgirl, to see how I feel her return is being portrayed.  But I can say, even though I haven't read them yet, that I already miss Oracle.  And what she meant to a lot of readers with disabilities, and specifically me.) 

And speaking of comic books, there's this article, regarding what one writer sees as the hypocritically sexist 'neighborhood' of superheroines.  She makes some points that I think are valid:

Most of all, what I keep coming back to is that superhero comics are nothing if not aspirational. They are full of heroes that inspire us to be better, to think more things are possible, to imagine a world where we can become something amazing. But this is what comics like this tell me about myself, as a lady: They tell me that I can be beautiful and powerful, but only if I wear as few clothes as possible. They tell me that I can have exciting adventures, as long as I have enormous breasts that I constantly contort to display to the people around me. They tell me I can be sexually adventurous and pursue my physical desires, as long as I do it in ways that feel inauthentic and contrived to appeal to men and kind of creep me out. When I look at these images, that is what I hear, and I don't think I even realized how much until this week.

 and others I can't comment on because I'm not an avid comic book reader, but it was definitely something to think about.  Comments not recommended, by the way: horrid. 


 This quote  

Those are the best things about having kids, is just those everyday, really funny, weird moments that you could never predict, that completely change your mood and, you know, open up your heart.

  and this photoset of Amy Poehler, that sums up exactly why I want to have a family. Why you'd put up with the colic and the clutter and the "oh my sweet jesus, why are you not wearing clothes-we have to leave right now and you are suddenly naked for no reason" and the "holy god you are only eleven years old, you do not get to pretend you know everything already" moments, just for a "My pleasure" every now and then.

On a more serious note, there's this HuffPo piece by Eve Ensler, which sums up pretty much everything I feel about rape and rape culture.  I'm over it, too. And neither of us is alone: here's Amalah's post about Penn State (her alma mater); and how over it she is as well. 

And two webcomics to round things out.  First up, from  Cowbirds in love :

Cowbirds in Love is awesome, in case you were wondering.

And lastly, from I don't know where, and I hate it when a backlink disappears: , which basically sums up my entire life right now.

Anything that is not doctor related is a plus, at this point.

Firefox is kind of getting on my nerves, because it is lagging behind for no good reason. I'm sure there's a good technical reason that opening certain pages - Words with Friends, Gmail, or 750.com for example - makes the whole damn thing freeze up, but I am not accepting those limitations: Come on Firefox, you can do it!  Because all of my family - the ones who won't come over and play a game in person unless you threaten to withhold their Christmas presents - is all of the sudden obsessed with playing fake-Scrabble, and I have to be able to (make up) play words like 'cwms' and blow everybody's mind. ("CWMS: Pronounced 'cooms'; welsh for cirque"), even though Scrabble, real or fake, is one of my least favorite board games ever. When it comes to word games, I'm more of a Boggle girl, myself - or Upwords, where you can fix other people's stupid mistakes (like stealing all the good bonus spaces).  But if we're playing a game, then I'm in.  So fix yourself, Firefox. 

In unrelated news, I did manage to leave the house for an hour today - to go somewhere that was neither MY doctor/hospital/ER/medical appointment or anybody else's doctor/hospital room/medical appointment.  This is notable because it is the first time since September 1st that I have managed such an outing.  So that's progress.  Considerably less progressive feeling is that my local Target was all decked out for Christmas, and I am still unsure that Halloween has actually passed.  Contributing to my seasonal denial is the unseasonably mild weather we're having here in Massachusetts - three days this week were over 60 degrees, and even though the nights are below freezing, it still might make it to 70 on Tuesday.  The words "70 degrees" and "Thanksgiving" are not compatible, in my estimation.  (The only Thanksgiving I remember it actually being warm like that was one of our holidays from hell, actually, so I'll pass, all the same:  Bring back the fall!)

I was going to say that running to Target is all I accomplished today, but considering how it good it felt, I'm going to exclude the "all" and call it a pretty good day, overall.

Late in the day, again

I keep putting it off and pushing it back - "Oh, I'll write at 7 o'clock, when this show is over, at 9 o'clock..." And somehow now it is after 10 o'clock, and I haven't put two words together.  I know you all are shocked at my procrastination skills. 

I do have good news to report, however: Mom is home from the hospital, and, while pretty exhausted (anyone who thinks a hospital stay is restful and recuperative has obviously never had one), she's doing pretty well.  Got some stuff to follow up with in the next couple of weeks, but definitely a lot better than she was. (She ate food.  Voluntarily.  Twice today that I know of. It has been weeks since that happened, so that's a big step forward.)

Also, I didn't procrastinate all day: I did in fact make cookies today.  Hooray for following through on something.  I made two batches of cookies, froze half and baked half  - because we honestly don't need five dozen cookies on just any regular day, like today, and because there's nothing better than knowing that all I have to do is cut a chunk of the frozen batch and I can have a couple of warm cookies any old time I please.  Plus: I am already there doing it, all of the ingredients are out, I might as well throw it together.  It doesn't take very long, the second batch, and I can do it while I'm waiting to pull the first round out of the oven. 

I also attempted to make a no-roll pie crust, and froze that as well.  I'm hoping for homemade pie crusts for my Thanksgiving pies this year, and meant to start two months ago, trying to settle on a recipe I like - and then things (my body, other people's bodies, the world at large) kept going wrong, so here I am just starting.  I am not a huge fan of the crust part of pie, for some reason, and pie dough rolling is nearly impossible for me, strength-wise, so it's hard to make my own.  I usually resort to the store bought, but I know it's not the best ever.  (And I like to make best ever pies, so it's a conundrum.)  I found a recipe on the internet for no-roll crust, and I'm going to see how that turns out.  It was wicked easy to make, but the recipe doesn't say anything about freezing it, long term, so I'm sure there will have to be a practice run on the pies before Thanksgiving rolls around.  (And I am not even thinking about the fact that that only gives me two weeks.  IGNORE.) 

Still, although I am currently sore as all hell, I love baking, and wish it was something I could do more often.  It takes a lot out of me, partly because we don't have a table at the right height for me to cook on, so I have to hop up and down from the counter in order to see into the mixer and make sure I'm doing things right.  (Oh, standing: why are you so difficult?)  And the hopping is exhausting, but I haven't figured out a better way yet.  (Recently, they put a long table in the kitchen for me to try, but someone must not have liked it there because before I even got a chance to try it, it was quickly moved back into the dining room.  That's ok, because I think it is still too high, but I kind of wish I could've tried it first.)  But hopping and soreness aside, I do have a bunch of mini-chocolate chip or butterscotch cookies to nibble on for my snack tonight, and that certainly tips the scales in favor of baking, however I accomplish it.

Pro tip: I realize that some of you probably already know about this, but it is my favorite cookie-related tip in the universe, so I'm passing it along anyways.  When you're storing your cookies, like in a tupperware container or something (we use old takeout containers: reusing for the win!), put a piece of bread in there with the cookies, to keep them soft and moist.  For whatever reason (and I know I am a geek, but I am not a science geek, so I can't explain it), the bread will get hard and stale, but the cookies will not.  Change the piece of bread every couple of days - if your cookies last that long - and the cookies will stay nice and fresh longer, which comes in handy if you are mailing baked goods as well.  (And the bread you can use for homemade croutons, if that appeals to you, but I don't like croutons, so I just toss it.) 

Time for that snack I was talking about... Thanks for all the well wishes for my mom; they are much appreciated. 

My mom's still in the hospital - her thyroid is acting up now (it always has, but to the extreme I guess) - and I am not liking that development at all.  Prior to this, except for a day surgery here and there, my mom hasn't been in the hospital since my soon to be 26 year old sister was born.  And the only time, before that, that she was a non-maternity patient, was when she was a teenager and had her appendix taken out.  So, before I was born, basically.  It's a frightening thing, no matter how serious or not serious it is.  And my mom is a horrible patient - today she walked down to the nurses' station and asked them if they had anything she could help with.  They had to laugh, and direct her back to her room.  You can't see me, but I am shaking my head.  Because that is how ridiculous she is. 

She not unused to hospitals - between my grandmother, me, my grandfather, my aunt, even a great uncle or two, she's been designated care person a lot of times, but not for herself.  (And will she let me do it?  No, she will not.  Frustrating!) And it's like everything she has learned about hospitals - that rounds are ridiculously early and blood draws happen at 4 a.m.; that you have to keep after the nurses, even when they're doing their best, because otherwise the doctor has gone home for the night before they manage to get in touch with him; that it's ok to ask for things like help untangling your cords so you can get to the bathroom; that sometimes it's nice just to have somebody sit next to you for a while, even if you're not doing anything, and even better to have a second set of ears (and questions) when the doctor wanders in - all of those rules and experiences, she can't seem to apply to herself. 

So there's that. 

Tomorrow, she's supposed to come home.  This is the third tomorrow in a row, though, so I am not holding my breath, because I remember how hospitals really work, and that one random number in your blood tests can mean more than one inconvenient delay.  Instead of holding my breath, I am making cookies.  Even though I can still barely eat, and food, for the most part, is unappetizing: I want cookies, and I want to make them from scratch.  So chocolate chip cookies, here I come. 

That's my Friday plan, how about you guys? 

PS - Thanks for all the Twitter love; I'm pretty sure I'm an idiot, because even though my real name was NOT supposed to show up, it did.  I don't even know where my brain was, or how that happened.  I think it's fixed now?  It looks fixed on my computer, anyways.  The sister who knows about my blog was commenting (in real life) about how I am really kind of of two minds about the whole 'screw it if people find me!'/ 'Holy Shitballs ~ someone might find me!' faux-internet-anonymity thing: It's true, I am, and I guess I must talk about it a lot.  Sorry if that's boring to you.  I don't get the sense that it's going to resolve itself, really; I'm going to want to be both public and private at the same time, and I'm going to have to know that there's a very small long term possibility of that happening.  For now, the risk is worth it.  It might not always be, but I can't tell you how glad I am to have this place, just today, just, right now. 

Glad enough that I would send you all cookies, if I could. 

Tastes like... chicken?

I just finished reading the most intriguing book, The Particular Sadness of Lemon Cake , by Aimee Bender.  It had such a unique premise - a little girl who suddenly develops the 'skill' to taste, in the food that someone has made, their true feelings.  It's kind of a tempting, exotic idea - to almost be able to read people's minds just by eating something that they've made - or even handled, as she can tell if the factory worker is disgruntled, if the truck driver is ready to retire, if the farmer is lying about how organic his crop is.  But with all 'gifts', there are some very severe drawbacks; When Rose first eats the birthday cake her mother has made for her, she is totally unprepared for the overwhelming hollowness that accompanies it, and that, she realizes, must reside within her mother's heart. 

The story was both foreign - what an odd concept, when you really think about it, to be able to decipher the thoughts, hopes, dreams, disappointments, trials of a person's life by whatever part of their essence they've left behind in the food they are making - and completely familiar: hers is a mostly normal family, with mostly normal people.  The way she talks about sitting at the dinner table and how each person at the table had such a distinct role to play - the brother who tunes them out, the father who pretends everything is fine, the mother who chatters away, the daughter who struggles to survive the next bite.  The relationship - lack of, building of, hope of - between Rose and her father was especially poignant to me, definitely reminded me of some of the times I've spent with my dad (either of my dads, really), and the sense of occupying the same space, but entirely different planets. 

The quality of the writing here was kind of startling, as well: I haven't heard of Ms. Bender before, but I've already added her backlist to my bookmooch wishlist, because she has a really excellent storytelling voice.  And every once in a while, one of her sentences would just sneak up on me, pounce: Truth!  Example: "After the incident in the ER, I no longer wanted to advertise my experience to anyone.  You try, you seem totally nuts, you go underground.  There's a kind of show a kid can do, for a parent - a show of pain, to try to announce something, and in my crying, in the desperate, blabbering awful mouth-clawing, I had hoped to get something across.  Had it come across, any of it?  Nope. " (p 106)   "You try, you seem totally nuts, you go underground:" That sentence there sums up a large portion of my life - you put yourself out there, and if people don't get it, if people don't get YOU, then back into your shell you must go, immediately.  And it takes a hell of a lot to try again.

I was greatly impressed by this book, by Rose and her family, and the secrets they all had.  By the way Rose just keeps sticking her neck out there, as best she can - and by the way she maneuvers her way through when she doesn't feel strong enough to try again - those days (weeks, months, years), and the getting through them matter too.  So: Excellent and intriguing story, one I think is going to stick in my mind for quite a while.  

I'm a little bit behind today because, in addition to other fascinating developments, my mom was admitted to the hospital last night.  It's only a semi-big deal, because she was admitted because of really low potassium levels, after a week and a half of not really eating.  So, dehydration plus, basically.  The plus is: what caused the nausea that made it impossible for her to eat for almost two weeks? Originally, we thought she had the same bug I had, but since mine turned out to be my gallbladder, it's hard to imagine that that would be contagious. 

Then she figured that it was switching from one dose of meds to a larger dose, which is still the leading theory, but because they're not sure, they spent the day ruling things (like her gallbladder!) out, just in case.  And she still there tonight because of another 'just in case': her EKG was slightly abnormal, and the potassium is not as high as they'd like it, so one more night of observation it is. 

It's frightening, even though I know she's in there for a minor issue, to see your mom laying in a hospital bed.  And she was in great spirits - mostly like her normal self, just hooked up to an IV and the oxygen cannula (she's got breathing issues that come from smoking for 35 years, so that's why the oxygen stuff).  It definitely gives you an odd twist to your gut - My mom, while not exceptionally healthy, has managed to not be admitted to the hospital since she delivered her last child - the child who'll be turning twenty six years old come January.  That's a pretty good streak, and there definitely feels like something's wrong to have it broken. 

The thing is, my dad deals with that odd twist of the gut in all the wrong ways: I know that he has some pretty poor coping mechanisms  - we've talked about his issues with alcohol before, for example -  but one of the worst is his ability to catastrophize (I think that's a word, but spell check says no: my psychology background says yes.)   It's just ridiculous: since coming home at nine o'clock last night, I have heard about three 'they were so young' deaths; the time when he was a teenager and his grandmother had a stroke and he came home to an empty apartment; and how the neighbor down the street caught MRSA while he was in the hospital for a routine surgery.  He told me about his friend's sister-in-law who won the lottery - $60 million - eleven months ago, and then dropped dead last week.

And I know - I know  - that he doesn't mean to be annoying, and that his mind is going there because he's worried, but for god's sake - stop putting those images in MY brain!!  And the thing is, he doesn't understand boundaries. So I can say, while he's telling this first story about an 18 year old who got hit by a bus, survived and then was killed by an infection in the hospital, that I don't want to hear about these things right now.  That tragedies are not exactly what I need to be focusing on at this particular moment in time.  That he is stressing me the fuck out.

And he'll stop.  Sometimes in the middle of the story, most of the times he finishes it and then says "Ok, I get ya."

But then 20 minutes later, he's back at my door, armed with a little bit of small talk - how was dinner? is the music too loud?  do you know how to make quiche? - and somehow it gets from there to tale of a 45 year old wife and mother who was smothered in her sleep by a guy she met online.  And when I tell him, more forcefully now, that I need him to shut up and keep that crap to himself, he'll make a serious face, and say things like "Well, it's life; that's life, and you have to remember that." Or when I interrupt him and tell him to knock it off, he'll nod and say "Dad's stupid; he's a guy; what do you want from me?" (I don't even know what that means). 

Worst of all, he's talking about how horrible his life will be without mom, and how miserable he is that she's just not here right now.  Meanwhile, I can't even get into how many issues they have with each other, or how I'm not certain, most of the time, that they even want to exist on the same planet as each other, but whatever: Sure, your relationship is AWESOME, super, Perfect!!!  So there's a bit of denial there, (a bit: ha!) , and then there's the fact that he wants to play Who'll Be Worse Off when my mom dies. 

A) NO - I don't want to talk about that. 
B) It's stupid to be thinking about this right now, when she's in for dehydration, which is something they can easily fix, and yes, it's worrisome, but (I can't type the rest of that sentence about how it's not serious without it feeling jinxy, but pretend I wrote that, ok?)
C) WTF?  Why is this necessary?  ALL OF OUR LIVES WILL BE HORRID WHEN THIS HAPPENS so why are we even asking this question???
D) Why are we asking it right now, when B) and we're already nervous about the damn thing?
E) Why are you an asshole?  Really - why?

Then he started talking about how she's his wife and that relationship is so vital to him, he won't know how to go on.  (I . Can't. Even. )   And she's "just" my mother, and yes, it would be difficult for me, especially me, since I'm so dependent on her, but she's his wife, and that's a whole nother level that I just wouldn't understand.

And then I punched him in the face.

No: Unfortunately I did not.  But I shut him off damn quick, because HELL NO.  At first, while he was spouting off that last bit, he looked at me, sort of waiting for me to be all "Oh, yes, of course: you will have it much worse than me", and then he saw my face, and he stopped talking post haste.  I could see that he wanted to be all explain-y and start justifying what he was saying - because it's a goddamn contest to see who's suffering more? - and I just said "We are Done. Talking. About. This. Now." and he thought twice about whatever it was he was going to say. 

Which is good, because otherwise, I probably would have punched him, and then neither of my hands would have been workable for typing out this post, but that's another story, and tomorrow's another (NaBloPoMo) day.  In the meantime, we could use some positive vibes over here, if you've got any to spare.  Between cancers and gallbladders and hospitalizations and arguments and tension and just getting through the day, I say a few stray happiness vibes are just about due in our neck of the woods.


Good night, bloggy world: Let's all hope tomorrow's a better day. 

 

A little surprise archeology

Doing a little room re-organization around here  - which is to say, in my quest to keep from being buried underneath piles of stuff, I asked for help & people moved my room around.  It actually looks much larger and more open (the wheelchair and going around large pieces of furniture are not good combinations.  Ask any piece of furniture I've ever gone around), and, while it's not perfect, it's a lot closer than it was before.  Of course, move one thing, find another 19 projects that have to be completed, and since we (they) moved every stick of furniture in the room around, you can multiply that by about 300 to get the picture of how much work was unearthed.

In the course of clearing out today's boxes, I found the microrecorder I used way back when I was in college.  Originally, I bought it to take notes, but I quickly realized that I wound up transcribing all my notes anyways, because I needed to read them to understand them better, and so I stopped using the recorder in class.  Instead, it became a way of recording the fights the PUS and Nana were getting into, the aftermath discussions we were holding downstairs in my room, and basically a lot of Nana saying that she wasn't going to put up with this shit anymore, and they were going to be out on their asses.  And by 'a lot', I mean at least 7 years worth of it - just snippets of conversations about the latest brouhaha and her insistence that my former uncle and his family would soon be out of her will, her house and her life. 

Listening to all of that again was like flicking a stress switch in my brain - I remember, so exactly remember, the feeling of impotence, sitting there, listening to her, knowing that nothing was ever going to change.  Until it did.  Until she wasn't there anymore to listen to, and I was left with all these tapes where I could hear her voice, but not her spirit - listen to little pieces of her soul get carved away all over again.  I fast forwarded my way through a few of them, just so I could label them and not come across them accidentally again. ( I know I should toss them.  I even started to.  I think one day I will, but it wasn't today.  Because it's still her voice.) 

I wouldn't have even bothered with the fast forwarding, except I knew that I taped other things during the course of those years - a brainstorming session for a story I was writing here, a research paper's theories there - and I found those too. (And Oh God: does anybody like the sound of their voice, because I absolutely HATE mine: I sound like a snotty little kid all the time, and I don't know how anyone ever talks to me!)

 But  then I came across something I had forgotten - the thing that made my day, and made all the trips down twisted paths of memory lane worth it: A recording of No Longer Youngest Nephew, when he was just a little baby, probably 15 months old - practicing singing "Happy Birthday" for his mama.   His baby voice is both foreign and familiar - It's not him anymore, but wow do I remember when he sounded like that.  I can picture his little chunky self sitting in his high chair, talking about "cake" and "mama" and trying to sing along with us while we prompted him.  It's startling, really, how clear memories can be - especially ones that were tucked away somewhere, waiting for someone, or something, to sift through and unearth them.

(This would be a great time for me to have a wav. file or whatever of the recording, but the only way I could think of getting it on here was running my webcam, and then setting it up that way.  But a) then you would hear my annoying voice and b) I didn't get a chance to even think about doing that, so  you're going to have to take my word that he's adorable.  Then and now.)  

I finally decided to take a page from the rest of the internet, and joined Twitter.  I'm @NeverThatEasy, if you're interested.  I have yet to make a single tweet, however, so there's not much to be interested in, as yet.  Right now, I am basically using it to stalk awesome people: Wil Wheaton, Rainn Wilson, Neil Tyson, Nathan Fillion.  Random awesomeness, in 140 characters or less.  I can see why people like it so much, but if there's anything that proves I'm a horrible over-thinker, it is my complete inability to compose a 1st tweet.

So much (wholly imagined) pressure!

Because tweets are forever, like the rest of the internet, but also because... well the awesome people I follow are so good at it, this wrapping up your life wittily in a minimum amount of words.  I - as you know if you've been here for any amount of time - am a bit more wandery in my worditry.  (See: also, I like to make shit up.  Although that seems to go over well on Twitter, so that works in my favor.)  Also, really I have very little to 'update' as I go through my day.  "Haven't left the house except to go to the doctor in over two months" is neither pithy nor interesting, but it's true.

My truth is pretty boring right about now, so I'm trying to come up with some imaginative stuff to tweet.  And not tweeting is no big deal, at this point.  I'm just gonna Twitter stalk the amazing people, and I'm sure something will come to me eventually.

If you're on Twitter, feel free to put your handle in your comment, and I'll follow you, too: give me some more awesome sauce to stalk.  (Or if you follow the funniest/most interesting/most relevant person, let me know that too!)

Ah, Twitter: yet another time suck!

Just in time

As I was looking around here yesterday, I noticed that I have written only 43 blog posts, in total, this year. That's less than half of what I wrote last year (or the three previous years), and basically just a November's worth of posts by itself, on any other year. I don't know why this year has been so writing-lite (although the fact that things around here have been commentor-lite certainly makes a lot more sense now): I didn't even realize it had been until I saw the numbers over there... I mean I knew things were hard, and that writing has been challenging, but I didn't realize just how slow things had gotten. I guess NaBloPoMo showed up just in time.

A few links for your Friday Night

Here's one that nearly had me in tears: An Open Letter to the Fat Girl I saw at Hot Yoga in NYC. The part that got me? 

Oh Fat Girl at Hot Yoga in New York, are you at war with yours, too? Has it let you down? Are you angry with it? I am. Righteously furious, actually.

This stupid body that has failed me in so many ways these last two years. It has been endlessly sick. It has required surgery and bed rest and vicious medication that got me well, but made me feel sicker.

I AM VERY ANGRY WITH IT for being sick, for getting fat, for not doing what I SAY.

But I am nice to it anyway, three times a week, at Hot Yoga.

Because I am A-OK, ALL FULL UP, TOTALLY ON BOARD with the being angry at my body. I would excel in that class, were it offered. But I'm sorely lacking in the being nice to it anyway department. She says 3 times a week for 75 minutes, she cuts herself a break, takes this class. I can't remember the last time I had a nice thought about my body and what it was able to do. When even breathing hurts, it's hard to be happy that you're taking a breath. It's hard, but it shouldn't be impossible. So I'm going to work on that.

Then there's the beautiful Kate, over at sweet|salty, who writes (with such grace and clarity) about something a feeling that is neither graceful nor clear:

The word 'anxiety', especially preceded with the word 'my', needs to be benignly neglected in the way that you ought to benignly neglect that kid who keeps saying the f-word at supper. The word 'anxiety', in its reference to a constant and entirely unspecial human state, needs a yoga retreat with a workshop about how inspiration is a myth that will only stunt its creative process and land it in the 75% of writers who will never type The End.

She talks about fitting in, and excluding yourself anyways; about jumping into the ocean and braving sharks, but hiding away while your friends roast marshmallows. She talks about living, really. And fear.

Sometimes, it's nice to know that other people are on the same page as you.  That's how I felt when I read this post from Black Hockey Jesus:

Do you remember, little girl, where we were when we read that book? There was no you or me or the circus of problems where the mind loves to play. We weren’t in a bed in an apartment nor could we be confused with the characters in The Miraculous Journey of Edward Tulane. We were simply gone. We gave way. We became the empty place where stories arrive, where they show, come to be told, appear, where they happen. Because it happened, didn’t it?

The magic of reading is overwhelming sometimes, and in his letter to his daughter, BHJ manages to capture that so, so well.


Lastly, there's this, a quote I had in my files for a while, but I saw it somewhere this week, and it was like a life preserver.  Delivering some hope, when I need it most:

It doesn't matter how long we may have been stuck in a sense of our limitations. If we go into a darkened room and turn on the light, it doesn't matter if the room has been dark for a day, a week, or ten thousand years -- we turn on the light and it is illuminated. Once we control our capacity for love and happiness, the light has been turned on.
—Sharon Salzberg

See you guys tomorrow! 

Sand Art

  Had my ultrasound this morning - hurt some, but it was manageable.  All the while I was laying there, thinking thoughts that shouldn't be thunk .. like how this is probably my 17th ultrasound, and every single time I have one, I'm laying there in that dark room watching the wand scroll through the shadows of my insides and wishing I was there to see the shadows of someone else instead, or of how many other people have laid on that same table, staring into the tv screen or at the flowers painted on the ceiling, hoping for something: for something to be there, or for something not to be there, and holding their breath either way. 

And I'm holding my breath too - as directed, of course - and trying not to cry, even though the pressure - the pushing of the wand and the weight of the world - seems immense and overwhelming, when you're laying there in that dark room.  My stomach is covered with goop, and now bruises, and I'm once again worried that this can go either way - they'll find it or they won't, they can fix it or they can't - and that, either way, it never seems to help much.

I don't know if you ever did this kind of thing when you were a kid, but they used to sell these sand art kits, where you'd take different colored sand and build layers into patterns or swirls or whatever, and keep them in little jars that you could give as gifts.  I made a bunch of them when I was little, and when I was teaching, used them in a lesson on pattern making that the kids all seemed to love.   Lately, I feel like my health is one of those jars - just layers and layers of different problems, each sort of shifting now and then, each building on the other, mixing in a bit here and there, all of them just continuously accumulating.  And there are patterns, sure, but maybe they're accidental, and some of them might be on purpose, but even so, it doesn't matter all that much, because you're still stuck with the final outcome - all of those layers have built something, only, in my case, it's not something I'd be giving anyone as a gift. 

All of those layers just seem to keep adding up, and instead of being on the outside looking at them all, I feel buried underneath them. 

There is no cure for chronic illness - I get that.  I happen to have a bunch of chronic illnesses for which there is not only no cure, but very little in the way of effective treatments - I'm not happy about it, but I get that too.  The part that I can't seem to come to grips with is how those layers just keep adding up - got an infection, got exhausted, started hurting, just never got better.  Got dizzy, started passing out, stopped being able to walk.  Started using the chair so I wouldn't be bed-bound, started gaining weight, stopped having an appetite.  Started hurting more, stopped exercising altogether, got different pains.  Got more infections, got random infections, got constant infections. Got nauseous, couldn't eat, gained weight anyways, started existing on a comfort food diet because it was the only thing I could keep down, got some random new disease.  Got hospitalized, couldn't bounce back, ruined sleep cycle.  Got surgery, couldn't bounce back, got sicker.  Did stupid shit, did smart shit, did NOTHING - still didn't get better:  It just seems like layer after layer, more questions on top of more problems, and nothing ever gets solved. 

Even things the doctors told me would be solved haven't been solved - are my sinus infections down since I got my tonsils etc taken out?  Sure; they've decreased by about 1/3, which is nice, but is still a sinus infection every three-four weeks on average. The pain meds help, certainly, but not even by a third, and still I haven't had a pain free day - or even a pain-lite day - in over ten years.  Ten Fucking Years.  That's a long time for hurting.  A lot of layers. 

I don't know: I promised myself, after yesterday's rant, that I'd write something more positive today, but I am just not feeling it.  I'm feeling trapped and overwhelmed, and out of control.  I'm stuck at the bottom under all of those layers, and it's hard to breathe under here. 

And that's all I could think about this morning, laying there in the dark, knowing that other people have it worse than me, and some people have it better, but either way I'm still stuck with what I've got.  And I don't like what I've got, not even a little bit right now. 

Ways November is sucking so far, as of today, November 2nd, 2011.

Three months ago, my soon-to-be-sister-in-law was diagnosed with breast cancer - they say, even though she caught it really early and, according to her doctors, "saved her own life", that it's late stage one, and very treatable. Today is her first day of chemotherapy, which she is (quite reasonably) terrified of. STBSIL and I aren't as close as I would like - We have some tensions based on her perception of my illnesses (see exhibit A), plus she mostly seems to think my brother is an ass, and (even when I agree with her), that can make it difficult for us to discuss really intimate type things. Added to that, our relationship is just now changing, because LilGirl is in school now, so I don't see her or her parents every couple of days, which is basically how it's been for 11 years, and it's very odd to try to figure out where our lines are now, and how to communicate with each other and all that. So it's hard for me to know how to 'be there' for her - she'll talk to me if we're in the same room, but since I don't drive and she can't right now, that's not happening all that much. I'm not a phone person, but I am trying to put that aside in this instance, to be supportive, and to let her know I can help with things, but she doesn't come right out and say what she needs, so I don't know what to offer help with. It's frustrating, this not being able to help thing, and I don't know what to do with it. But, for today, I'm mostly just hoping that the chemo turns out to be easy peasy, and, if it isn't, I'll figure out a way to help her in the way she needs help.

I'm feeling useless when it comes to other people in my life as well: For some time now, my mom has - quite obviously - been battling depression. It's mostly been presenting (to me) in the 'I can't get motivated to do anything but sit here/I'm thoroughly exhausted just looking at the shopping list' vein, but I can tell there's a lot going on there, and very little of it that she's willing to share with me. She's seeing a therapist, and is trying different medications, but ... so far there's been little improvement. This is challenging to me in a couple of ways - The most important being that she is miserable, and I can't really do much about it (I do send lots of Internet links and things that give her brief smiles, since I remember how important those felt to me when I was at the bottom of the pit, but that's about it). Further down on that list is that there are a million things that should get done that aren't getting done, and I can't physically do a lot of them (laundry, dishes, dusting, meals), so they sit there, taunting her (and me), and as they accumulate, so does the stress and pressure - both internal and from other members of the family. It's another hard reality of my diseases - like not being able to just drive down and sit with my STBSIL - that I can't help out with the heavy lifting, when other people get tired of it.

Which leads to yet another, and more selfish, problem I'm having - with Mum as my PCA, a lot of the things I need help with are falling by the wayside too, and I'm stuck with having to a) ignore them and pretend they don't need to be done, b) add pressure to her by requesting that they be done, or c)try to find somebody else who can do them for me. You'd think c) would be the easiest/smartest choice, but you'd be forgetting that the money Mum makes as my PCA contributes greatly to our household income, not to mention that to find somebody else to do things means I would have to fire my mother , while she is suffering from depression. Oh yeah, that'd feel wicked great.

There are numerous other household issues, too - my sister and her husband are way tired of picking up the slack, which I don't blame them for, and yet can't help worry that it is harming our relationships, on the whole. My dad is feeling crappy because he has RA, and he just started the medication for it. No Longer Youngest Nephew and his dad (Only Brother) are having huge conflicts lately, and I can't understand why my brother won't just back off a little and cut the kid some slack, which is causing conflicts between us. SisterCh seems to be in some newlywed bliss, complete with ability to ignore everybody else for weeks at a time. SisterK is both thriving and homesick in Iowa. SisterS is off in her own little world with her boys again, but still manages to send Facebook barbs about how I'm not making the right life choices. Grandmother is lonely, and I can't stop spreading germs long enough to get over there. And I'm sick. Again. Newly. Always.

(Note to you: Do not read the following paragraph while eating, since I talk about things that may negatively impact your ability to do so. Sorry!)

Three weeks ago, I had a sinus infection, on top of my injured back still hurting so much I was having trouble wearing clothing. Two weeks ago, my back started to improve a tiny bit, but my sinus infection rebounded so that I had to have another round of antibiotics. Last week, I had an MRI, which caused a setback with my back, and then I either screwed the pooch with my migraine meds or caught some stomach bug, because I spent three days throwing up, and haven't stopped being nauseous in over a week. During that time, I did something really wrong to my insides - I thought at first it was a gas bubble from not eating for two days, then, when it got worse and hurt so much three days later, I figured I'd pulled a muscle or something, what with all the puking. It's a very odd pain - sharp, just underneath my right ribs, worse when I'm breathing (which is wrong, because I usually do deep breathing to help with pain), and radiates up behind my right shoulder blade sometimes. It was so intense those first days, I kept wondering if it was possible for an appendix to grow back - but because I am stupid stubborn, I refused to go to the Emergency Room again (it would have been my 4th trip! In under 3 months!) I still don't know what it is, but after today's appointment with Zack, he's leaning toward yet another part of my body revolting against me: this time, my gallbladder.

Are you kidding me, body? What did I ever do to you? I'm scheduled for an ultrasound, ultra-early in the morning, and that's going to be SO MUCH FUN. And then... well, we go from there, and see what's what. However, I think we can all agree, given this rundown, that I might have some real grievances here.

And those are just some of the various reasons this November, this special month dedicated to counting your blessings, is sucking for me so far. You've got 28 days left, November - you're on notice, and you better start improving.

Maybe tomorrow, I can try to write about some happier things. Or, alternatively, I will be on so many pain meds post-ultrasound - I know they don't bother other people, but for me, with FM, and the fact that wearing clothes or being touched at all significantly hurts? It's painful - that you will get some very interesting prose. Come back and see, and we'll all be surprised.

Game On.

Here it is November First, all over again. And for the first time in five years, I have given very little thought to participating in NaBloPoMo, where you agree to post at least one blog entry for every day of the month. I am seriously doubting my ability to complete the entire challenge, not because of something big and world changing, but because of a million different little things. I talked about it some in this post, already, but I'm still finding it difficult to put words to paper (or, more likely, computer screen) in a way that seems legible and laudable. I mean, I can just say random things for thirty days in a row, I'm sure, but I don't particularly want to do that: I think this blog and I are past the point of just posting to have a post up. (At least, I hope we are.)

No, I want what I say here to matter, and that's half the problem right there - it matters so much that it grows and grows in my mind until I can't write anything, because what can I say that's going to be new or different or interesting or worthwhile? And while I have tons of things I think it'd be great to write about, more often then not, they get all stopped up in my head together, and I spend an entire hour trying to untie them enough to type them out, only to wind up with a mess of nonsense that's definitely not publishable.

So I'm not making any promises on my ability to complete the month, but I am going to commit to sitting my butt down and trying to get the words to come out in a way that makes sense, for three reasons. First, I need to follow through with something - I feel like I'm letting too many bits and pieces of who I am slip through my fingers. Second, we all know that having all of this stuff log-jammed up in my brain is not doing me any good, and it'd be great to get some new perspectives on some of this stuff. And lastly, I always feel such a sense of pride and accomplishment when I complete NaBloPoMo, and I'd hate to either lose that feeling or break my streak.

I could use all the good feelings I can get, at this point. So I'm here to kick of November on the right foot, and cross my fingers that it goes as well as it can. Tomorrow we can talk about all the ways it is sucking so far, but for today, November: let's do this!

Need a dustbuster for a cloud that big

As usual, my absence here at the good ole' blog is both really complicated & startlingly easy to explain: I got sicker, in one way or another, and writing fell way down on the to-do list. Which, we all know, is never a good thing for my headspace, but for some reason I can't seem to remember that until it's been weeks since I've been here - or written anything longer than a grocery list - and my brain has retangled itself into the jumbled position that writing isn't important enough, that "it's too hard/I'm too boring/it doesn't even matter." And then it takes me forever to actually make sense of anything that's up there in a cohesive way, and more time passes, and then I start feeling the pressure of that time passing, and my thoughts and emotions get so scattered and confusing, I imagine they swirl around me in a Pigpen-esque cloud.

So here are a few health bulletins I can manage to decipher from all that mess:

• My back is getting better, and considering that next week it will have been 2 months since I fell, I have to say it's about damn time. It's never going to be great, since that's where my sensitivity is usually the worst anyways, but it's starting to get back to my 'normal' for longer periods of time. I may even put a bra on this week, which I am both dreading and resigned to: with girls as big as mine, bra-less in public is just not a good choice - (Not that I haven't done it a few times in the past two months, because, there was no choice, but if I can put it on, then I should - so I don't feel like a huge slob, anyways.)
  
  
• The biggest surprise, and mental blow, that I have been dealing with healthwise, just recently, is the news that I am either pre-diabetic or diabetic. A few months ago, after yet another Infection From Out Of Nowhere, I had to see an emergency gynecologist (who knew there were such things?), and during the course of our appointment, she commented on the fact that sometimes, when a patient is getting a lot of random infections, she's found out that their blood glucose levels have been really high, and maybe we should check for diabetes? I shrugged my compliance, fully expecting that it would be just another test in the unending series of meaningless theories doctors have when it comes to my body. Besides, I know Zack runs a blood glucose test on me every time I'm in his office, and he would have told me if mine was wonky. A week later, the gynecologist calls me back, and she says it came back really high, and that means I'm positive for diabetes. It was actually a Hemoglobin A1c test, which measures your average blood sugar during the past three months, and a good number is less than 5%, a pre-diabetes number is less than 6.5%, and anything over that is considered diabetic.
  
  Mine was an 8.2, and I burst into tears when she told me. Mostly because I never considered it wouldn't be negative, and also because diabetes, well, that's FOREVER and SCARY and HOLY SHIT SOMETHING ELSE THAT IS WRONG WITH ME!!! She seemed a little taken aback that I reacted so intensely, but told me that she would get in touch with my PCP, and she'd go over all the options and treatments and what not.
  
  Here's what she didn't tell me, that Zack later did: Infections can cause really high spikes in blood sugar, and they can even cause diabetes. And, in a nice little cyclic twist, diabetes can cause frequent infections, particularly of the skin. It's also another clue into what the hell is wrong with me, according to him. He got really excited about it, because how had it changed so quickly (my blood numbers), and what did that mean - was it a new symptom of the greater autoimmune disaster he considers my body to be, or was it just a reasonable, if wholy unwanted, result of my size and inactivity and poor eating habits (which I didn't really consider all that poor, until I started having to track them)?
  
  Even more mysterious is how, when I was retested by my PCP a week and a half later, the number had dropped again to 6.4, back into the pre-diabetic range. There were lots of "that shouldn't happen" discussions, because apparently an active infection should not cause your blood sugar to spike so dramatically, and since mine did, what does that mean? They don't know, AND I don't know, but what I do know is that even if I'm only part-time diabetic, meaning only when I have an infection, that's still more than half of the year, so I still have to find a way to manage it. Which right now means doing a lot of MATH during the day, and calculating my carb intake and all that fun stuff, which is better than I expected, but still not a lot of fun - it's MATH, people. (As in "Dear Math, Solve your own problems")
  
  
• I found this out a couple of weeks before I fell, and then the math portion of my brain was out of commission for a while (in addition to any portions of my brain not concerned with pain blocking), and the nutritionist couldn't see me until last week, and then I got another infection - this time just a regular old bronchitis - and now that my brain is turning back on, I'm trying to really focus on what kind of changes I need to be making, and it's getting complicated, fast.
  
  
• And, to end on a more positive note, some time shortly before my sister's wedding, I found out about a local Fibro study, and was accepted to participate. Unfortunately, it's not for some new miracle drug, but instead is using MRI imaging to study brain responses to painful stimuli, and how well certain coping mechanisms, like visualization and deep breathing and all that effect those responses. It's an easy enough study to be in - an MRI when we started, an inflated blood pressure cuff on my leg to create (manageable levels of) pain, lots of talky talk with the lead investigator for a few weeks, and then another MRI to finish it up, to see if anything's changed. The study itself hasn't been hard, but adding in additional doctor's appointments has been a bit of a challenge, but one I am (now that it's almost done with) happy I followed through with. This is the first real study I've been in (I've tried some protocols with my doctors, in conjunction with a study once or twice), and it feels like such a positive step - even though I know it's not going to be that longed for miracle drug, the idea of helping the doctors figure out what the hell is going on is something that makes me feel like I'm not just marking time, but actually doing something. Which is a nice feeling. Of course, I've been delaying that last MRI for weeks now, because it means having to lay flat on my back for 45 minutes or so, which was out of the question. So I'm hoping to finish that up in the next week, so I can move on to something else.

But I'm going to take a break for today. Lots of complicated medical rambling to start off your Sunday morning.... now I have to go and figure out what sort of breakfast I can forage up.

Rabbit's hole of procrastination

I'm not sure what most of you use to surf the internets, but I prefer Firefox.* In the latest three (or so) versions of Firefox, there's a new "Group your Tabs" option which is both the best thing ever (!1!11!) and possibly the key to my downfall. Here is what it (basically, only larger and with less concealed) looks like:



All of those little white squares, within the larger light blue squares, are websites that I am in the process of reading, or writing a comment on, or playing a game with, or having a discussion on: They are basically some of the little pieces of my brain that are floating around the internet in some capacity. The light blue squares and rectangles are the groups - I've got a crockpot recipe one going, all the crap I've got to pin (If you're not using Pinterest, you are missing out on one of the greatest procrastinatory tools of our times - sorry I can't share my link: I had to sign up with Facebook, which is obviously not anonymous), videos to watch when I don't also have the TV running, book reviews to read and books to add to my TBR pile, and various other things, including a large group of "read these more carefully" which includes about 2 months worth of Dear Sugar posts, and lord only knows what else (Quite possibly your posts, if we're being honest, since I have run out of space in my Google Reader). When the large squares get so full of little squares they don't fit anymore, you get that layers of paper look that's in that rectangle to the left of center there: that just means there are so many pages to read that I have filled up the group size. (Then I usually shrink it down so it doesn't look like so many, hence the "Books" group being so tiny.) So given that I have all these new ways to organize the things I'm reading/pinning/watching/playing, would you like to take a guess as to how much of the time I spend organizing rather than reading???

Ah, procrastinating my main way of procrastination: it's like Inception for procrastinators! And it's just asking for trouble, I tell you.

Anyways, that's what's new in my world ~ a way to spend more time on the computer and actually get less accomplished, a goal I would have said was near to impossible just a few short months ago! What's news with all of you? You may have said something about that in your latest blog posts, but since I'm still more than a thousand posts behind in my Google Reader, and Firefox has made it so nifty for me to move your post directly to the "Read this more carefully" portion of both my screen and my brain, I can't promise you that I've read it yet. I will get there though!

In the meantime, nice to see you, and I'm sorry if you still use IE: there's really no reason for that. (I may hold a grudge against certain IE related fails from way back when, including the time the program itself seemed to "melt" - actual computer person's terminology that I still have no idea what it means - and took a good three hours worth of schoolwork with it, but that's just my own prejudice.)



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*If I were to put this in SAT terms, it would read My preference for Firefox is to my hatred of Internet Explorer as Eating Cookies:Eating Rotten, Raw Eggs. I have dabbled in Chrome a bit, but Firefox is my platform of choice (if only for awesome plug-in capabilities).

"When I get caught up in the web of feeling, tied up til I'm completely ensared in those slender threads of pain -

that’s when I realize that I’m out of any human reach——-out of the reach of rescue, but not out of harms way. You can’t kiss stuff like this and make it better—–sure, you could kiss it but what difference would that make? Kiss it and make it the same. Carrie Fisher

Thanks for showing up for the September Disability Blog Carnival ~ I had such fun (and a few minutes of trepidation, I won't lie) putting this together, and I hope there's something here that is meaningful to you.
I had the tentative theme of Being Seen, and I think we managed to get some great posts that address just that.

I'm going to start off with a rather sociologically bent contribution,Embodied Ontology Model: A Way Forward, which was suggested by Jon. Although it focuses most specifically on the Deaf community and its needs, I think its ontological perspective is pretty compelling for anybody who's interested in the larger sphere of dis/ability. There's a lot of talk about the pros and cons of the medical vs social model of disability, and the gaps that people can fall into if you're looking at it in an either or type of way:

The desire to belong and to fit into society is a strong human need...Recognition of difference, or ...‘otherness’ is crucial for minority groups in negotiating their place to ‘belong’ in the diverse cultural landscape... Yet there is considerable resistance or social inertia to acceptance of any form of difference within society.

I think there's a lot of interesting stuff here about being seen: wanting to be accepted, to belong, but also to have the recognition of differences, and the making a space for (or, alternatively, isolating) those differences along the way. It's definitely thought provoking.

One of the more interesting aspects of being seen, for those of us with 'invisible' illnesses, is the idea of disclosing: How and why and when do you tell people about this part of yourself? Leslie, at Getting Closer to Myself, discusses disclosing, and her specific hows and whens, in this recent post . She's so honest about the need for connection, and the vulnerability that you can feel in those situations: it's definitely worth a read.

The ever-wonderful Laurie, over at A Chronic Dose, has a provides her thoughts on disclosing as well, both as a teacher and as someone who suffers from chronic illnesses.

Next, I'm including a post from the uber-famous Bloggess, about how it feels (to her) to be living through an RA flare, for a couple of reasons. For one, as a person with FM, I'm all too familiar with the hideousness of flares and her words really resonated with me:

"Life passes. Then comes the depression. The feeling that you’ll never be right again. The fear that these outbreaks will become more familiar, or worse, never go away. You’re so tired from fighting that you start to listen to all the little lies your brain tells you. The ones that say that you’re a drain on your family. The ones that say that it’s all in your head. The ones that say that if you were stronger or better this wouldn’t be happening to you. The ones that say that there’s a reason why your body is trying to kill you, and that you should just stop all the injections and steroids and drugs and therapies."

and made me wish I had someone in my life to tell me "“It might be easier, but it wouldn’t be better.” Secondly, since we're talking about Being Seen, I thought it was important to note that such a prominent blogger was able to shine a spotlight on something that doesn't often get discussed. To me, seeing that there are other people out there who get it? Is vital.

Here's a poem Megan at Mirrored Lens posted for Invisible Illness Awareness week, about wanting your doctor to see you (but I know my eyes plead fix me) that I think many of us can relate to.

thatwordgirl spends some time talking about how she wants to be seen, and how she can make herself be seen differently, in this post about being the It Girl. I envy her her costume geekery: although I've gone so far as to paint the Batgirl insignia on my hands for the trick or treaters, I'm not quite bold enough to go full-out Oracle for Halloween.

This post, by Wheelchair Dancer, about the audience's reaction to the dancing vs. her own perception of it is illuminating. I've seen some of those "weaker choreographed" pieces (not from that troupe specifically, but in my internet travels, certainly), where the dancers in wheelchairs somehow seem to be props for the more 'able bodied' members to show off around. And they're kind of heartbreaking. Because I've also seen the wonderfully choreographed ones (and am now wishing I could find them - YouTube, why aren't you cooperating?), where the chairs are neither props nor handicaps, and all of the dancers dance.


Sharon Wachsler spends some time calling out Esquire Magazine, and a few other organizations, in her post Disabled Writers Need Not Submit:

"Nobody has to say, "I wasn't thinking," because they don't have to think . . . about disability. About us. That's what ableism is about. That's what privilege means: not having to think about what you don't struggle with."

Surely it's hard for people with disabilities to be seen if they can't even access opportunities to tell their stories?

And on the subject of telling stories for PWD, I wanted to point out this post, by s.e. smith, because I'm a total bibliophile, and this discussion of Mental Illness in Young Adult literature added more than one book to my TBR pile. Since books mean so much to me, and there's so many just plain bad - poorly written, stereotypical, not at all feasible, miracle cured! - books out there about people with disabilities (for all age groups: I did my thesis on disability representation in picture books, and there was more than one groan-worthy inclusion, let me tell you), I am so glad when someone gives kudos to authors who are doing it right. As smith says "These characters were carefully researched and sensitively depicted, in a way that resonated for many readers."


Thank you all so much for coming to this edition of the Disability Blog Carnival! Next month's edition will be hosted by Spaz Girl (Cara) at Butterfly Dreams. I know she and Penny will keep us posted.

Then she said, “You know, it’s so funny. What keeps any of those people in that dining room from being like me is just a virus, a thing in my body over which I had no control. Why did I get it and not them? Fate. Circumstance. Luck. But I have a place on the earth, just as they do. I have rights. ... When the shrink talked about how the disease would affect my personality, I talked about how my personality would affect the disease. I didn’t understand why nobody… I kept thinking, ‘I am me! I am still me!’” Her voice began to shake and she closed her eyes, then opened them. “Wipe my tears away and give me a chocolate,” she said." Elizabeth Berg: We Are All Welcome Here

Nope. Nope, I'm not going to go on and on about how I should be posting more - a) there aren't any shoulds out here in the Wild Wild West.com of blogs, and b) I am doing what I can, so that's going to have to be enough. And also: I realize the guilt I feel is coming from me and not some clamoring of readers who are demanding that I provide them with words to read every ten seconds, so I'm going to just try to cut myself a break or two here... for at least this paragraph.

On to new deals - Things here are going ok-ish. By which I mean all of my old problems still exist, and new ones continue to crop up: You know SSDD. For the most part, though, I'm recovering from my fall (almost a whole damn month ago now), with frustrating slowness, but still recovering so I'm going to just take what I can get there.

In the good news department, my cousin - the one who has been on bed rest for the past 4 months because every time she got up she had contractions - has safely given birth to a very healthy, full term baby boy. This is majorly good news, and I"m hoping to get over to visit the little guy and his mama at some point today (if I can bear to put on my bra long enough to accomplish said task). Some sacrifices must be made, and between her bed rest and my not leaving the house nearly ever, it'll be an adventure, that's for sure. Of course, at the end of her adventure, she gets to go home with a little cuddly cutie, and I get to think up creative ways to get my bra off in the car without anybody noticing, so it's not exactly an equality type situation, but what are you gonna do?

I also want to remind people that I'm hosting the Disability Blog Carnival next week, the deadline is Tuesday the 27th, and I am going to swallow my pride a little here and say that there have been very few contributions, and I could use as many of you who would like to participate as possible. Again, you can leave your links on this original post , or send them to my e-mail, link above. I'd really appreciate it.

Somehow or other it's turned out to be Friday again, so have a great weekend everybody!