Thursday, July 17, 2014

*But literally: just enough.


God it has been a shitty, shitty day. Week. Couple of months. Couple of years. (Peppered with just enough non-crap and actual happiness to make it worthwhile, I suppose.*)

"Say what? She's going to near disappear for most of two months and then come back with this complaint-clusterfuck?" Yes: yes, she is.

You may have noticed that I have been largely absent, and that is because the part of my brain that writes the words (at least the words that make sense) has been taking a sabbatical ~ unscheduled and unapproved, I assure you ~ and every time some words make an appearance, I feel like they're not good enough, or sensible enough, or long enough, or enough enough for posting, and so... radio silence. (Here, at least. My tumblr, what with it's gifs and reblogging and queue never-ending is still going strong, and you are welcome to find me there anytime.)

But I'm breaking my word-fast today because my brain is boiling over and I can't rant about it on Facebook without getting a whole lot of well-meaning, but completely ridiculous faux-advice; Twitter's out of the question because 140 characters just wasn't cutting it; and honestly I would like to start writing here again and coming back and admitting I suck at consistency is sometimes the hardest part.

So, yeah: it's been a tough little while for me, and I'm having a hard time making my brain act like a reasonable adult brain, when all it wants to do is stress-eat (or never-eat), read (mostly Avengers' fanfiction, which, WTF: Now I have a lot of feelings about JARVIS, which ... is probably unreasonable? Seems unreasonable when I am not actively reading about a personified Dummy named DJ** who is super adorable and has to be reminded to wear pants), and move as little as humanly possible because everything hurts.

And I guess people say that a lot "everything hurts," and probably I say it even more often, because I feel like it has lost ALL meaning to people, including myself, because the reality of it is so freaking overwhelming that you can't really think about it all that much without overloading your brain. At least I can't. But I've been realizing just how much Everything and Hurts and All The Time is truly limiting me, and so, I made an appointment with a new pain clinic.

Even though my last three experiences with pain clinics were - in reverse chronological order - useless; 'hey everything you're already doing is exactly the stuff we'd tell you to do, so you're kind of shit out of luck'; and 'hey, i don't think it will really help, but i could try to stick this really big needle in the base of your skull and see it if will numb things for a while, wanna try that?' And I'll note here that I am kind of pissed that I didn't try the big, probably won't help but who knows needle in the skull, at this point, because fuck: did I mention that everything hurts???

My skin hurts. It hurts to wear clothes. It hurts to have the fan blow freaking air at me, even if it's 90 degrees and I'm dripping with sweat. Sitting in a chair hurts, sitting on my bed hurts, laying on every pillow I own (and I own a LOT of pillows) hurts. I've been spending my painsomnia nights designing suspended animation machines that make me float, where literally nothing is touching me, and they sound like the most wonderful things ever to exist. (Except that they don't and I can't design things, so basically, I lay around being jealous of cartoon cupids who can lounge on clouds, because damn, I bet that doesn't hurt.)

But: Pain clinic #4. First appointment: Really nice nurse, excellent office staff. Doctor's kind of an insensitive ass who didn't understand POTS or the wheelchair or why I wouldn't at least attempt to give him a urine sample in the bathroom that was too small to fit my wheelchair (so I'd have to try to walk, which: no.), but not a complete idiot or anything, and usually nobody gets the POTS, so I shrugged it off.  We did a mouth swab and he poked me all over, because taking my word for how much it hurts is never going to happen, I am aware of this by now. And then he comments on my hyperalgesia, which: duh - I just got finished telling you that I almost cried when I put my bra on that morning, but by all means, please rest your hand on my shoulder while you're talking. Also took not of my shading skills  - because you KNOW they all have that little naked generic human form and tell you color in the areas where you have pain, and, well, they mailed me my form, so I had plenty of time to be VERY SPECIFIC about where the pain was the worst (darkest) and where it was just tingles (lighter) and where if you touch me, I most likely will be unable to control myself and will want to punch you in your face (those were red. I like to issue clear warnings. Which he clearly did not heed because shoulders are RED.)  "Do you have enough pain meds to tide you over for a month?" "Yup." "Okay, see you then."

So, today was appointment #2, and the nurse is still nice and the office staff is still excellent, and the doctor walks in the room and says "The mouth swab we did last time didn't show any traces of DRUG I AM TAKING, so we're not going to be able to prescribe any additional medications for you from here on out." Literally, the first sentence out of his mouth.

And I... didn't understand what the heck he was trying to say? Like... "I don't get it." I must have said that a few times, because he started to get impatient with me a little. And I was still trying to process the whole "not going to be able to prescribe medications" bit, because: I'm sorry, that's the whole reason I'm coming here??? So, then he starts talking about "Well we have a few ways to measure compliance with medications, and your drugs didn't show up in your swab, like we would have expected them to if you were taking them..." and he blathers on a little bit before it actually unscrambles enough in my brain for me to blurt out

"You think I'm selling them or something - that I'm not taking them?"

Which: probably not the best response, but I was gobsmacked. I mean... It still is sitting there in the part of my brain that is trying to make sense of the whole thing and ...

Now he's looking at me: "No, I'm obviously not saying that. I would have no way of knowing that. It's just that IF you were taking them, as you say you are, then we'd expect that it would show up in the swab, and the fact that it didn't...." And his face tells me very clearly that yes, yes he is saying that but he is not allowed to say that aloud.

And here I'm going to have to give 6-hours-ago-me a little slack, because I have thought of A HUNDRED MILLION BETTER RESPONSES than getting choked up and almost bursting into tears, but that is, in fact, what happened. I just... couldn't process it. So I tried to to get him to explain it to me like I was five: "If my prescription says take as needed, and I'm trying to keep from becoming, I don't know addicted or completely tuned out of my life, and I freaking PUSH THROUGH THE EXTREME PAIN OF MY EVERY DAY LIFE to save those pills for flares and really bad days and the like, you're telling me that that's a bad thing? And now you won't give me anymore of the stuff that gets me through those really bad days? This.. makes zero sense."

And now, tears are slipping out, and I. Hate. Crying. During. Arguments. Because it makes me feel weak and it feels like playing a dirty card, and the other person obviously sees it as a sign of a lesser argument or something, but I DON'T KNOW HOW TO STOP DOING IT!!! Granted (and again, with the slack-cutting) I held back the sobs that were sitting right there, clustered in my sinuses, clogging in my throat, but some tears definitely slipped out and he knew it, and he was all "Well, if you're not taking it as prescribed then it's non-compliance, and we can't give you anymore meds, in that situation."

And I'm still trying to understand the whole "AS NEEDED" part, and he's still rambling, but what it basically boils down to is "If you hurt as much as you say you do, you would obviously be taking this every minute of every day, like the doctor told you to, so No: I don't believe you, and No: I won't give you anymore."

And at that point, my brain, so GOD DAMN FUCKING SICK OF NOT BEING BELIEVED ABOUT MY OWN GOD DAMN BODY, just refused to accept anymore input. He said more things about "maybe another clinic will see you, but I doubt they'll prescribe for you either. Or take your non-insurance." and I knew I had about 2 minutes before every sob I was holding back just burst out of my throat (possibly with this morning's breakfast), so I just said screw it. Fine. Nodded while he told me how glad he was to meet me, nodded at the very nice nurse who looked at me and knew I was going to explode and didn't try to stop me as I just rushed past her desk and into the waiting room where I told my mother that we had to leave Right. Now.

And I didn't make it 3 seconds out into the corridor before the dam burst, and my poor mom looked like someone had shot her and kept asking what she could do, and all I could say was just "Go. Just go."

Super-fun-happy-awesome-times!

So now it's some hours later, but I'm still angry. I'm angry about - and so unbelievably weary of - not being believed. Not, for one single moment of this entire 20 years of being sick having everybody on my side. And, usually? Having almost nobody.

I'm so tired of having to fight with doctors in addition to fighting whatever the hell is going on in my body. Of having to explain to and make excuses for and prevaricate with and never fully trust the people who are SUPPOSED TO BE HELPING ME. Of having to do so much of this on my own, and knowing that I am messing it up but not knowing how to fix it. And having nowhere to turn.

I just.... don't want to do THIS anymore.

I am so sick of fighting for every minute of every day. Of being punished, or paying the high price, for any moments of happiness, because my body is just ...  the way it is.

And the more I think I've accepted that, that this is me and my body is not my enemy and I have to find SOME WAY to live as much of a life as I can? The minute I start to think I've got a handle on this shit? Everything blows up in my face, and I'm suddenly a newb again, and all I want to do is hide my head in the sand till it all goes away.

And it never goes away.

And time still passes.

I don't know. This is a super depressing post, and I'm sorry for it, but ... I thought I was doing the right thing! That's the worst part. I literally thought that NOT taking a very potent pain medicine three times a day, every day, and... suffering, yes: but... I'm used to that! And, at least I'm there! And... at least I'm present in my mind when I'm there! and then I take the full doses after, because Flare! Of course flares! Because that's what I know, and that's how I live, and that's what I thought was the right thing - save the big drugs for the worst days (or even the slightly almost worst days, because we have other drugs for the worst, worst days), and muddle through - THAT IS BASICALLY MY WHOLE GODDAMN LIFE AND NOW YOU'RE TELLING ME: NOPE, YOU'RE DOING IT WRONG.

Nope: you're not taking ENOUGH of the medicine, so I'm not going to help you at all.

Well, that's a mind-scramble, if you don't mind me saying so. Because half of my doctors say I take TOO MANY meds, and now you're telling me I'm not taking enough AND you're not even going to give me a chance to try it your way, just 'don't bother coming back.' Yup: Mind. Fucked.

So, here I am, reevaluating ... pretty much everything - which has been happening a lot lately, and part of the reason this was so shattering today, because I THOUGHT at least this was something I had a good handle on, but it turns out that Nope: this is a screwed up as the rest of my life and now... FIX IT ALL RIGHT NOW.


So, you know: no pressure or anything.

God I need a nap.

That's me, for today ~ How are all of you? (Are there any of you?) I'm mostly keeping tabs on my regulars via Twitter/Tumblr/Your Blogs that You Sometimes Actually Write Words At Because You Are Magicians or Something, but

Hi! If I haven't seen you in a while. Hope you are well!

Probably your brain is not as scrambled as mine, in which case, I'm giving you a sticker, because you're awesome. (I'm giving myself a sticker too, though, because I'm at least TRYING to be awesome, scrambled brains and all.)

Talk again soon, I hope? In a less ranty, less "oh god oh god why" kind of mood, we can all hope.

---                               ----                                                                           ---

**Seriously: You should read this series. If you want to have Bot-feels (which I didn't, but Oh Well.) And because DJ. I'm sorry, only because you might get sucked in. Fanfiction is like a vortex or something, and NOBODY WARNED ME. I'm not going to warn you either, but... good luck!

Thursday, May 01, 2014

Hulking Out (BADD 2014)

So I knew BADD 2014 was coming up, and my brain has been... uncooperative.  In fact, it has been pretty uncooperative for anything besides reading Marvel fanfiction and carving out random hours of time to spend with my family for about a month now. :shrug: It happens. But a confluence of all three of these things happened over the weekend, and it seemed like too much of a good thing to pass up, so here we are.  Please be warned that this is completely ridiculous and that I KNOW I am stretching the metaphor a little bit too far - OK SO FAR - but... :shrug: It happens. (Also: some spoilers for The Avengers & maybe random comic book knowledge?)


----

During a sleepover with my niece and nephew this weekend, my (soon to be 8 year old) niece and I were playing with modeling clay while I was making dinner. Mostly, this consisted of her making a thing, showing it to me, and then setting it aside, or asking for help with a particularly difficult part of the construction (making a Bruins 'B' for her brother required a cookie cutter, as neither of us could make a B that would suffice, for example).  But, at a certain point, I'd gotten all the ingredients cooking and was just sort of waiting for things do be done, and so I sat at the table with her and started to make a figure of my own.

I chose the Hulk because a) I know how to make basic figures in clay, b) the green was closest to me, and c) LilGirl and I had been talking & reading about The Avengers just prior to dinner-time. We chatted a bit about Hulk and how he'd become the Hulk (origin stories - not always appropriate for children!), and how he's usually a 'normal' guy, except if he gets hurt or angry or there's dangerous situations going on. She remembered that her favorite part of The Avengers movie is when Hulk  smashes "the bad god-brother" and laughs "Puny god". She even demonstrated for me with the clay in her hand.  I told her how the old TV show of The Incredible Hulk used to make me so frightened I'd hide behind the couch every time poor Bruce Banner changed into the unbelievably large (to then 5 year old me) Lou Ferrigno, but that once he WAS the Hulk, he seemed ok; even nice, mostly... If you were nice to him. And how he always seemed so sad, at the end of the show, walking off down that highway, twinkly, piano-theme music playing behind him, which led us to talk about how hard it would be to make friends if you were the Hulk. I finished up my Hulk as best I could - his face was still not great, but at least his arms stopped falling off - and she finished her sculpture, which she then gave to me. She'd made her brother a Bruins 'B', herself a smiley faced self-portrait, and me, a copy of my wheelchair. I oohed and ahhed over it, and then the next steps of dinner took over, and I asked her to start clearing off the table while I got the rest of the food together and found her brother.

A couple of hours later, when we were finished eating, cleaning up, and playing games, she went to give her brother the B, and I was going to show off my new clay wheelchair, when I looked to where she'd put them aside, and found Hulk, standing in the chair. LilGirl explained to her brother that she'd made the chair, and I'd made Hulk, and when he asked, "Why's he in the wheelchair - he's a superhero...?" She made a face like he was being ridiculous and answered "So? Superheroes can have wheelchairs -" When he went to say something else she looked to me "Can't they Auntie?"

Before I could respond her brother butt in (the two of them are not great at letting each other finish sentences, but that's what siblings are for), rolling his eyes: "Of course SUPERHEROES can, but HULK doesn't use a wheelchair, because then he wouldn't be Hulk." Now they were both looking at me. Um... OK.

"Yeah, I mean, of course: Superheroes DO use wheelchairs" I rolled into my room and brought out my Oracle trading card, showing her the lovely and super-amazing Barbara Gordon in all her technological splendor. "We've talked about Oracle before, right, how she used to be -" "Batgirl" her brother put in. "Right." LilGirl took the card, gave it back - "Yup, I remember. But Batgirl is not an Avenger, right?"

I laughed and thought about explaining how Batgirl isn't even in the same universe as the Avengers (mostly), but... thought better of pushing my luck. "Right. But... Um Hawkeye - in some versions of the comics: He's deaf, so he has a disability and is an Avenger. And... " Nope: not going to explain PTSD to an almost 8-year-old, but... "And Iron-Man, in the movies he has a panic attack, and sometimes that can be a disability - anxiety disorders."

"And I guess it isn't exactly super-normal that you change into a big green monster when you're angry either" suggested her brother, ALMOST apologetically. "Well, I'm not sure disabled and normal are exact opposites there, bud" I corrected him gently (because you try and correct a 14 year-old any other way), "but yeah, I think maybe Hulking out could stretch into the disability category if we really tried, because it's something in his body that he's not always got control over and a lot of disabilities -" I gestured to myself "are kind of like that. Cousin Sara once called her seizures Hulking out." (Our cousin has epilepsy.)

"Plus, how you said that sometimes the Hulk - or the doctor who is the Hulk - gets so sad because people don't understand him? That's the same, right?" Lil Girl offered and I was kind of stunned. Because -although we talk about it a lot, how people don't always understand about me or how much it can hurt when you want to do things but you just physically can't - I wasn't sure she really ever got that part of it before. Shows what I get for underestimating her. "Um, yeah, kiddo - I guess that would be the same kind of thing, really. Sometimes being sick can be wicked lonely." Her super-sweet brother shoved his chair closer to mine and put his head on my shoulder.

"So see: Hulk could need the wheelchair." LilGirl gloated at her brother, never one to let an opportunity to best him pass. I rolled my eyes at him, because he's older and we share the experience of little sisters, if nothing else. And then I said "He could: but even if he didn't use the chair, he could have a disability. Lots of people do. You can't always tell." 

"Well, this Hulk needs a wheelchair." she said, showing it off. "He looks good in it too," I agreed, "although you probably could have told me that before I spent so long making his legs strong enough to hold him up, you  fruit loop."  She laughed, and we got ready to watch a movie and call it a night.

While I realize that not everyone will be on board with the whole Hulking out/disability metaphor (and I'm not sure I'm 100% behind it myself, as my brain cells would need MUCH better focusing skills then they are currently capable of), when I was thinking of BADD, and what the hell I was going to write about, it was this conversation that I just kept coming back to.  There's a lot I could say about it - I could talk about the power of representation, and having books and media that accurately portray characters with disabilities in a way that helps CHILDREN especially create a more realistic view of their actual world.  I could go on and on about how great it feels that some of what I'm actually hoping these children in particular are learning is actually getting through (Empathy! We can haz it!).  I could definitely ramble at length about how much I miss Oracle even though I love the current run of Batgirl. 

But really, I think, for me, this was about how often we underestimate what kids can understand, and how they understand it. To LilGirl, there was no reason that Hulk couldn't both be canonically Hulk and use a wheelchair: at eight, that limit doesn't exist for her. By 14, her brother, on the other hand, has more experience with the actual Hulk's story, and knows that (in canon) Hulk would never need a wheelchair. Which was also fine, because, to him, having no control over your body whenever you get angry seemed like a disability in and of itself. Sure, neither used exactly the terminology I would have preferred (normal =/= non-disabled, for example), but that's small potatoes compared to the big stuff. The big stuff here being that neither one of them thought it was even the tiniest bit absurd that Hulk - whatever his disability might have been - would be a superhero. There was just enough "Well why the hell not" in both of their attitudes to make me proud. (And not enough "But they're special BECAUSE OF their disability" to make me worry about running headfirst into super-crip territory.)

Because WHY THE HELL NOT??? is basically how kids work, and we should do a better job of living up to that, all around.

PS: Here is our Hulk, complete with his chair. My favorite is the push handles in the back of the chair, because I like to picture Captain American rushing into battle, pushing Hulk's chair while Hulk smashes with Cap's shield.



PPS: In case you haven't heard it, here is a link to The Lonely Man, which is the actual title to the theme song from The Incredible Hulk, which I didn't know until right now. The song still gives me the sads, though.

Saturday, April 12, 2014

Things that shouldn't be hard, but are.

I'm in the handicapped stall in the Bertucci's bathroom, staring at the same four little tiles underneath my feet, trying to breathe, afraid to do anything more, anything other, than that. Outside are 4/5 sisters, a handful of my niblings and not my brother. Inside the bathroom, an older lady who'd held the door open for me when we were both coming in, is coughing in her stall. Peeing.

I'm just sitting and breathing.

In the movies, or books, when a character goes into the restroom to have a breakdown, it is conveniently huge, echoing and empty, or otherwise a single stall with someone rudely banging away on the door. Here, it's me and these four tiles and the old lady in the stall next to me.

And I couldn't have a breakdown even if I wanted to, because everyone is counting on my to be an adult, there has already been enough drama. My brother and older sister already had a disagreement that ended with him leaving the restaurant before we'd even been seated. There was no actual yelling, and it was probably better that he left, because restraint is SO not his thing, but the kids are on edge, the remaining adults are feeling a little awkward, a little off. (Or at least, I am.)

I have not slept - and I mean in any way for more than three minutes at a time - for over eighty hours. No real reason; just a shitty painsomnia cycle combined with brain overload and pills that stopped working all of the sudden. Not completely unexpected or unheard of, just another joy of life with chronic illness. I know I've made it over 100 hours with no sleep before, but it's been a while, and it's definitely disorienting. Everything seems either too close or too far away - as if I'm looking down the end of a spyglass, or as if they are all looking down the end of one towards me. Sometimes both, at the same time.

I've left the table rather abruptly, but when I get back, only one of my sisters notices. She claims I have a weak poker face "The worst poker face", she says. She has no idea how wrong she really is. If she can see through it even that much though, imagine if I had just started bawling in the ladies' room? Imagine if the one who puts everybody else's pieces back together - who can see that my brother's leaving is worrying my nephew and attempt to joke him out of it, who can see that the sister who tried to plan today's visit is poaching in self-recrimination (our first restaurant had been too small, too hot & unable to seat us quickly enough for my brother's patience; this next choice seemed to have no food options for our nephew with multiple food allergies) & try to give her a bit of a bolster (as the one whose plans USUALLY blow up in her face, I know that particular stew too well); who can see which little one is jealous of the baby and which big one is itching for his phone; who notices the fake smiles plastered on and rushes to fill the cracks in between - Imagine if she were to suddenly lose some of her own? 

It is not a thing that any of us wants to find out.

I know I don't always have to be the strong one, or the bossy one, or the one who notices, or the one who tries to help.  It feels like I do, but I don't. Usually, almost always, I WANT to be that one. I don't ever want to be the indifferent one or the one who doesn't care, or the one who walks away. Still,  I try to step back and give people space, and let others step up and fill different roles.

 But sometimes, like today, sitting in the Bertucci's bathroom, staring at those four tiles, trying to pull myself together enough to go back to the table instead of collapsing into a large puddle, I wonder "Why doesn't anybody ever put my pieces back together?"

I hope, some day, that there'll be someone I can depend on to do that for me. With me.

It's a lonely feeling, and I know it's not even 100% valid - I DO have people who care, who help, who fight with me to put my pieces back together: Even today, my sister noticed, asked, tried to help. But sometimes, just sometimes, it feels like I don't have that help, that I can't accept it. And that's a hard way to feel.

And if it took me a little bit longer to put my poker face back on, then I'm just going to have to be ok with that. Because I managed. I pulled through, and ate food, and coaxed smiles out of infants and adolescents and adults alike. I put a smile on my face that was semi-natural and I made it through. And we all made it home.

And that's today's triumph. And I'm going to take it.

Wednesday, April 09, 2014

TBR Mountain? Meet TBR Universe

So if you've been reading here for any length of time, I hope you know enough about me to know that I am an avid reader myself. Of everything. And anything - shampoo bottles, literary tomes, complicated scientific articles, every kind of novel ever (romance, sci-fi, fantasy, crime, thriller, YA...), obscure biographies, how-to books, and so much more. But up until last week I had avoided getting entangled with fanfiction.

My reasoning was not snobbish - I do not consider any kind of reading to be better than any other, after all, and a person who takes immense joy in selecting picture books as presents for people of all ages has very little in to say about other people's reading choices. If you like it; it's worth reading, is my basic reading philosophy. (Which does not mean, if I don't like what you're reading that I'm not going to find some way to build a literary bridge between your (poor) taste and mine, because, really if you like fairy tale retellings, I can find 72 better fairy tale retellings than the one you are reading and then we can talk about it and fangirl together, and won't that be more fun? Yes: yes it will.) Like every reader, I do have issues of personal taste when it comes to books - things that make a good book amazing, subplots I have had enough of, characters I wish would show up more, things that make a good plot go bad - but I'm no literary snob (despite the English Lit department's best efforts).

No: my reasons for abstention from fanfiction were varied & personal  -
  •  A) I didn't know a lot about it, except that it's not always finished & I HATE waiting for things to be finished*;
  •  B) some of the pieces I had wandered upon were ... poorly written/edited/solely smut (not that there's anything wrong with that except for - ) 
  • C) I tend to have my own head canons about things - certain favorite characters, primarily - and I don't like to see those get messed up and
  •  D) the sheer amount of reading material I already have on my plate & an unwillingness to open the Pandora's box of literally ever written character I've ever fallen for having an infinite number of more stories told about them.

But - even with these well-thought out & well-intentioned self-preservation techniques in place - I threw it all out the window one day last week when I started reading a phenomenal Avenger's Fanfiction series. Which I found completely by accident, and which I am very upset there are not more stories in. (See star below.)

But, as often always happens in reading - one thing leads to another and here I am, a week later, having barely put a dent in the multi-verses of fanfiction that's out there, but having a ton of non-canon Avenger feels and ignoring all my other reading responsibilities. 

Literally - I barely have read anything else in a week, and that's unusual for me, because I've always got three-four things going concurrently.  In this case, however, if I don't want to be reading Avenger fanfic, I can just switch over to Sherlock or GoT or virtually any other thing I am even the tiniest bit interested in. Not to mention crossovers. (No seriously: let's not mention them because I maaaaaaaaaaaaaay have spent an entire day and a half stuck in the MCU, and now I'm mad that the Avengers, the X-Men and the Fantastic Four don't all play together in the movies, because of stupid studios.)

There is fanfiction for everything, and for a person who reads as much as I do, this is Very. Dangerous. Information. Favorite author fan fic; favorite character fan fic; favorite book series/movie/television series fan fic; I don't play video games, but if I did? Fan fic.

And it was somewhere between the Nora Roberts/GoT crossover fanfic and the Star Trek reboot fan fic where Bones was finally getting his due that I realized something - some of the first things I ever wrote were fan fic. The Little Women retcon  FIX where Laurie does not end up with whiny Amy and Jo does not marry a professor we know very little about. The Tiny Toons Adventure scripts where they got to hang out with the Animaniacs. The alternate ending to It (spoiler alert) where Bev - who is 11! - doesn't decide to have sex with her friends for no goddamn reason, just because they're lost in the freaking sewers and Stephen King didn't know how to get them out of there without being a creep. (I was 11, and I can guarantee you that it would not have entered my mind to lead the group out of the tunnel that way.  Even if I was a slow learner - and I'll admit I was - 11??? Also: I still think that was a shitty thing to do.)

I've been re-writing endings (And middles.  And beginnings.) of stories since I started reading them.** And while I am extremely relieved that publishing as I was writing was not an option for me (although it may have been and I just... don't share what I'm writing, so it's likely that never would have happened anyways), I'm so glad that the Internet has introduced me to YET ANOTHER group of my people.

I can only rue the fact that it did not include some wormhole that enables me to read while also accomplishing other things, or an extra 52 hours in a day, so that I can devote them solely to reading and actually accomplish something else. As always, there is just so much more to read, and so little time to actually do it.

The sacrifices to readers (and writers) make. ;)



*Please see: Actual Comic Books, a literary art form that I truly love, but only in retrospect. I do not appreciate a bi-weekly serial. I do not like the cliffhanger versions of stories where I'm supposed to wait to find out if favorite characters survive. I get enough of that in my television watching, thank you very much. And also in my book series reading, which I both love and hate: Love spending so much time with characters and revisiting them, hate having to wait for the next book to come out. Am not patient about this, for some reason.  (And this is why I have a half-year's worth of Batgirl comics to catch up on: because I want to be able to read them all in one gulp.)

** One of the many books my mother saved from my childhood is a revision of The Monster at the End of this Book, the first book I remember reading out loud by myself, the first book I loved, as a reader. So, the fact that I then did my own version of it, way back when, suggests I was a little slow to pickup on the whole "fan fiction is for you, you dope."

Wednesday, April 02, 2014

Don't ask me why I watch shows that seem specifically designed to piss me off, ala Dr. Phil & Judge Judy

When I watch a show like Dr. Phil (which: see title) and I see him talking to a person whose behavior is abusive - maybe physically, maybe verbally, maybe emotionally: doesn't matter - and they reach the point in the conversation where Dr. Phil thinks he has broken through to the 'truth' of the matter, that he is making the abuser SEE that they are abusive and that it is unacceptable, and the whole audience sort of breathes a sigh of relief like 'finally: this guy gets what he's doing, he SEES it, and that's going to be good enough," it makes me ... livid? Shake my head? Wonder how a 'clinically trained psychologist' can be taken in by such blatant pandering? All of the above?  Yes: all of the above.

Which is my way of saying I have had yet another 3 1/2 hour 'conversation' with my dad about unacceptable behavior. Mine, to his line of thinking; His, to the rest of the world's.

It seems that my short answers and 'pulling faces' is unappreciated by him - to which I responded "too bad." Short answers and resting bitch face are my least offensive options for interacting with you on a daily basis - a thing that is required because you have gone back on your word yet again and haven't left yet. My tightly drawn mouth is a direct result of having to bite my tongue against the things I'd like to say to you, the names I'd like to call you, the disrespect that the bullied part of me wants to heap back onto you in any effort to expel it. (And which I control not for your sake, but for mine, so that I do not become the bully I hate in others.)

"I'm not even sorry for the faces" I said, at the conclusion of our 'talk': "They're the closest thing to self-control I've got towards you, at the moment. And you're just going to have to deal with that."

That was after three and a half hours of frustrating round-and-round, never-ending saga that anyone of my siblings could basically repeat to you right now, if I called them up, despite not having been at this latest one.

It is, in fact, our family's own special version of the ouroboros - the snake eating its tail, for infinity - He is emotionally distant/abusive/threatening, screws up, calls people names, explodes (usually in a huge, terrifying and abusive way)... there is a 'calming down' period, which is to say a living in denial period where people avoid all mention of the latest incident, then eventually, he is 'forced' (by someone's behavior - not going to lie, usually mine) to 'discuss' it, to 'apologize', to seemingly take responsibility while at the same exact time explaining away his bad behavior by a) becoming the victim rather than the perpetrator (which is how he ALWAYS feels, guaranteed: "I was trapped; you don't understand; I grew up with X...") and b) blaming the actual victims ("Those meds that she's on make her unreasonable"; "Nobody appreciates the shit I do do, everybody only talks about how I screw up" - Well, when you're version of doing stuff is 'making sure there is a roof over our heads' and your version of screwing shit up is 'kicking people I supposedly love out of the roof I am putting over their heads' then, yeah: You kinda have to expect that.)

And round and round and round and round (literally ad nauseam) it goes.

Yesterday's discussion started with my 'bad attitude' which - I am pleased to say - I did not once apologize for. It's not a bad attitude to have boundaries, and to react when they're constantly disregarded (parrots the Adult Child of Alcoholics and Psychology Major, in an effort to actually feel that way, instead of just saying it all the time). It's not a bad attitude to be unwilling to risk being hurt again by a person whose only predictable responses are to lash out at the people around him, particularly when he knows he has a temper (but takes no steps to address it, because "I'm 65 years old" a refrain I have literally been listening to since he was 45 years old) and has a drinking problem (but doesn't see it as one or care to curtail it). It's not a bet I am willing to continue anteing up for - and I said that straight out.

I also told him that he's in denial about the way he actually lives as opposed to the person he thinks he is.
  •  He thinks he's the person who shows up for people, always no matter what. He's actually the person who made the summer my grandmother was dying 3000% worse by picking fights with my mother and sister, threw my sister out of the house the night of her wake and then didn't even come to the funeral. That's who he actually is. 
  • He thinks he's the guy who didn't abuse his children because he never made us go hungry or put us to work at the age of 9 (as he was forced to do when his father abandoned his family). And that's partially true - we've always had food on our table, even when it was tuna, white bread and deviled ham. And while we may not always have been grateful for that (I guarantee that I was never grateful for either tuna or deviled ham), I also don't think he deserves a trophy or cookies or a special award for meeting the bare minimum standard for decency.  I told him that while he may not have been the guy who left, he certainly was abusive. IS abusive. He's actually the guy who told me I was a "cold hearted bitch, just like my mother" and just recently explained that, had it not been for the "burden of me and my 'disability'"(which he put in goddamn air quotes), he and my mother would not be breaking up. He's actually the guy who made me* afraid to EVER make a mistake because who knew how out of proportion the punishment would be; the guy who doesn't know how old his children or grandchildren are; who thinks his relationships are fine even though he puts no effort into them at all.   
  • He thinks he's the guy who puts every single dime he earns into other people's needs. He's actually the guy who went out and bought himself a new TV-set for the basement because he "didn't appreciate the cold shoulder" my mother was giving him in the den (even while dodging calls for the past-due mortgage), who goes out and blows ??? money on drinks and food every night, who asked the daughter he "physically can't stand" (and is on a highly resctricted income) for loans so that we could keep the electricity on for Christmas (and won't explain how the money slotted for that bill just disappeared).

I pointed out all of these inconsistencies last night, and at times - like the Dr. Phil guest - he seemed shocked into silence. Into agreement: "I know I'm an asshole" he would say, as if it were news to me. And then, five minutes later there would be the "But what you don't understand is...." and I would sigh and shut it down.

 "It's not that I don't understand. It's not even that I don't care - although at this point I would LIKE not to care - it's that it's not excusable. YOUR PROBLEMS ARE NOT SO MUCH WORSE THAN EVERYBODY ELSE'S. YOUR ISSUES DO NOT ENTITLE YOU TO ACT LIKE AN ASSHOLE TO OTHER PEOPLE - ESPECIALLY PEOPLE YOU ARE SUPPOSED TO CARE ABOUT. YOUR LIFE IS NOT THAT MUCH MORE STRESSFUL THAN ANYONE ELSE'S, AND THE FACT THAT YOU CONTINUE TO MAKE EXCUSES FOR YOUR BEHAVIOR IS WHY I REFUSE TO INTERACT WITH YOU."

Which I had to say at least 15 different times and at least 15 different ways. And in the end it was still "I don't like you being mad at me" and "We at least need to be civil."

No: I am not civil to people who speak to me in abusive ways. No: I am not civil to people who speak to my mother (sister, brother, friend, stranger on the street, lady on the telephone, aardvark in the zoo) in abusive ways.

No: I do not placate bullies any more. Because I have done so: too many times to count. And it's ridiculous to pretend that that does not play into his cajoling routine, that that is not, in fact, a vital element in our tail-swallowing-snake-swallowing-tail loop.  But the fact is that I am determined not to do that anymore, and no amount of bullying on his part (or on the part of my other family members, who continue to make me feel like the unreasonable, bitchy, judgemental one) is going to change that.

I have a right to build boundaries, and have them respected. "It's not fair that you won't at least be civil to me, when I keep asking if you need things or cooking or..."

"No: It's not fair that you continue to ask me questions when I've told you to leave me alone. It's not fair that you use my illnesses (and inability to sometimes preform a task like cooking) as a ransom if I don't behave the way you want me to. It's not fair that I have constant anxiety whenever you are in the house, that I'm always waiting for the next big blow up - those are things that are not fair. Me telling you to show respect to the limitations I've place on our relationship? Is beyond fair. Me, not responding in kind when I have any number of names I could - in all FACTUAL honesty - call you? Is beyond fair. You're getting more from me right now - with all the looks and bitten tongues - then I feel you are entitled to already, so you need to just leave me alone, and let it be."

So: +10,000 points for me, for sticking to the script (and yes, you know I write the script for this sort of thing in my head - if not on paper - at least a million times) and not giving in even when he tried to make me feel uncaring and cold.

But -10,000 points because I know he will do absolutely nothing with anything we talked about yesterday, and I'm just going to have to keep having this conversation until we can finally move out.









*One of the hardest things I do in these 'discussions' is stick to "me statements" because I can't speak for the experiences of all of my siblings with 100% accuracy. But I know damn well that 3/5 of us would say he's been abusive. And the other two would describe abuse while saying "he did it for our own good", which... speaks for itself, in my opinion.

Tuesday, March 18, 2014

I confess: I totally made up more than one science fair set of data. It's too late to do anything about it now, Mr. Lindstrom!*

Because I am currently in a measuring cycle of illness (wherein the doctors want me to record everysinglepiece of information about my illness numerous times during the day, and I hate it, and then I forget, or I am too sick, or I am too sore, or I just do not care at all, and I am tempted to just fill in all the blanks the way you would if you forgot to do your science fair homework and needed to some extra research done), I am going to hit you with a by-the-numbers post:

  • 17 - The number of prescription medications I am currently taking
  •  2.5  - The approximate number I think are actually doing something, maybe? Who can tell?
  • 0 of those are new drugs and 
  • 2 of them are for breathing, so that's good, anyways.
  • 86 - My average resting heart rate for the past month
  • 139 - My average standing (or post-standing) heart rate for the past month - That's just standing: God forbid I try and do anything over that because then
  • 175 - My average "I attempted to also stand for longer than it took for the pulse ox to read my pulse" rate for the last month 
  • 1 - Number of times I have left the house since the calendar read March
  • 0 - Number of times I have left the house since the calendar read March that were not doctors' appointments  
  • 3 - How many different strengths of antibiotics it took to kick this last sinus infection, probably because of
  • 5 - The number of sinus infections I have had to treat since Christmas
  • 17 - Books I've read in the past week
  • 1 - Books I've written a review of for Cannonball Reads in the past week
  • 0 - Reviews I've actually posted on Cannonball Reads in the past week
  •  17,000 - Number of excuses I've given to myself for not writing/posting any of the others
  • 14  - Number of people who have promised to come over/said "we should come over"/attempted to/said they would like to see me since the New Year
  • 4 - Number of people who have actually come over (and one of them is an infant, and the other a husband, so neither of them had much say in the matter)
  • 2 - Number of times I've watched the Veronica Mars movie already (Yay Kickstarter! Yay for getting first run movies delivered to your computer! Boo to computers freezing at P I V I T O L moments in the movie! (If you have seen it, think 'cars', fellow Marshmallows, and you will understand why I was so unhappy.) 
  •  1.5 - Number of days it took me to watch all 3 seasons of VM on Amazon Prime in preperation for the movie 

  • 6 - Number of draft posts I have written since I've published a post here, all incomplete
  • 5 - Number of Tumblr posts I have published for the whatshouldwecallfibro.tumblr.com I am a co-admin of, in the same space of time (because giffing is easier than writing, people)
  • (Currently most popular, by the way: For all of you chronically ill Whovians out there)
  • 63 million (approx.) - Number of times I have wanted to throw the computer and it's stupid Excel spreadsheet of numbers out the window since I have been symptom tracking
  • 3 - Different websites I signed up for because I thought they would help with the symptom tracking, only to bail because it was easier to Excel it myself 
  • 2 - Separate weeks my dad has been on vacation already this year, and I have been stuck in the house with him
  • 0 - Clues that he has that there is anything 'off' in our 'relationship' even though I have spent the better part of 
  • 2 - Separate weeks ignoring him as much as possible (When I had the sinus infection it was 0% possible, because I could not even find the kitchen, let alone make food.) 
  •  
  • 39 - Average number of hours a week my mom has been working at the retirement home for the past month
  • 100% - How exhausted this is making her & how much it sucks to still be the one who can't work, even though I'm 
  • 200% proud of her for kicking ass and doing so awesome (The old people love her, of course: They all request her and one woman told her she was an "angel on earth." But it's also seriously depressing, and even the stories she comes home with bring up all sorts of Grandmother-y related feels for me, so I know how tough it is on her.)
  • 16 - Other things I've got on my to-do list for tonight
  • 2 - Realistic count of how many of those things I might accomplish (eat/shower)
  • 0 - Cares I give that my to-do list will be carrying over to tomorrow
  • 100% - Realization that I should rename the to-do list the "Carried over from before" list, because it's more honest.
And finally:
  • 6:00 - The time, and that means more numbers to mark, more foods to eat, more pills to take, more things to cross of the list. 


*And I usually NEVER cheated, but ... I'm not going to watch this stupid thing for three months: I'm going to put it together a few weeks ahead of time - IF you're lucky.  My brother and sisters were all "do it the night-before-ers", so I think me occasionally fudging the data on whether or not cats and dogs are right and left pawed is not, so much, the end of the world.

Friday, February 28, 2014

Seriously, evolution: tears are not a good communication tool

I'm doing that thing where I'm taking a little thing - the inability to get a prescription refilled in a timely manner - and turning it into a big, huge thing - EVERYTHING IN MY LIFE IS FALLING TO SHIT RIGHT NOW. So, if the pharmacist at Rite Aid wonders why that lady who has called everyday this week just hung up while obviously holding back tears: there's her answer.

Zach's new hospital situation is crummy: I don't especially like the hospital, but that's fine; having to learn all new office and blood and nurse people sucks, but I've done it a million times, and can manage again; the hospital itself is a labyrinth that I traveled during the first days of my illness, and being there brings an odd sense of deja vu added with the feeling of 'holy shit I can't believe I'm still dealing with this mess' (since, when I originally fell ill, they told me it would only last a few months); But the main problem is getting in contact with him is near to impossible.

If there's one thing I've got down at this point, it's how to keep my meds refilled - I know which ones have to be written and mailed (or picked up) and which can be called in, and I USED to know approximately how long it would take from phone call to fax to authorization to filling to pick up for most of my regular meds. This new place?

I might as well be calling him in Hades, leaving messages with Cerberus, or sending them via Charon's freaking ferryboat.

I left a message last Thursday, saying who I was and what I needed, knowing I had about 5 days worth of meds left. I heard back nothing ... Ok. So I called back on Monday, and left another message. Tuesday, I called Rite Aid, and since they still had no new prescription, I called again. I repeated this again on Wednesday and Thursday - when I did finally manage to speak to a nurse who assured me that Zack was in the office that day, and she would make sure he sent the refill to the pharmacy. (I knew he was in that office on Thursdays, hence why I called LAST Thursday, but... moving on.)

This morning: Rite Aid reports, still nothing. I called and talked to the same nurse. She said she would get the message to Zack at his other office and get back to me. (I do not have the phone # for the other office, which is a HUGE problem, I realize now, but how was I supposed to know that then?) Hours pass; No call from Rite Aid or the nurse. Now it's 4:00 on a Friday afternoon, I'm out of pills, and I call again, leave a message.

5 minutes later, she calls me back: She spoke to Zack who said he sent the rx yesterday, but will resend it right now. Thanks and gratitude all around: Have a good weekend! 

No confirming call from Rite Aid.... so, at quarter to five, I call them, and the pharmacist says "nope." WHILE I AM ON THE PHONE WITH THEM, I get the Robo-call from Rite Aid, which I answer: "Your recent prescription requires additional information from your doctor before we can fill it. Please call your local Rite Aid" So I call them back, and a new, very cheery pharmacist puts me on hold. And plays cheesy 80s music in my ear for 10 minutes, and now it's after five on a Friday, and ...

"We don't have any refills left on that prescription."

No, see, the reason the robot called me is because my doctor just called the refill in, otherwise it would have no reason to call me.  More hold time, more cheesy 80s music.

And now - I freely admit - I am beyond frustrated. I am ready to lose my mind because this isn't even one of my complicated drugs: this is a base line drug! This is a "I can barely function, and this drug gets me to barely" drug. This is not some miracle cure I'm chasing: this is a drug I have been on for 9 years, that I refill every single month of those 9 years, and now it's after 5:30 on a freaking Friday, and you're going to tell me...

"You should call your doctor's office and have him resend it. Sometimes this happens."

And I can tell at this point, that I'm not going to be able to continue the conversation. I'm just. Done.  I'm not a person who gets mad and starts screaming (generally): when I get upset the tears gather behind my eyes and my throat gets clumpy and I start to have to swallow and sniff a lot, and take a lot of deep breaths and blink repeatedly and hope that the other person doesn't notice that I'm probably going to start bawling at any minute.

I don't think I hid it very well, because the cheery pharmacist lady started apologizing "Sometimes this just happens, you know, it gets lost between us and them... I'm sorry? Maybe he has the wrong number... call him and try again."

And what I say is "I... just. This is ridiculous. Ah. I.  Ok."

But what I mean is "IT IS ALMOST 6 O'CLOCK ON A FRIDAY NIGHT, AND HE'S GONE: HIS OFFICE IS EMPTY, AND THERE'S GOING TO BE NOBODY THERE TO RESEND THE DAMN THING, AND THIS SHOULDN'T BE HAPPENING BECAUSE I DID EVERYTHING RIGHT! I CALLED AHEAD AND I PLANNED IT OUT AND I EVEN GAVE YOU ALL ENOUGH LEAD TIME TO BE STUPID ASSHOLES ABOUT IT, AND IT'S STILL WORKED OUT SO THAT I DON'T HAVE THE MEDICINE I NEED AND THERE'S NO WAY FOR ME TO GET IT UNTIL MONDAY? I'VE BEEN TAKING HALF OF MY DOSE JUST SO I DIDN'T RUN OUT THIS WEEK ALREADY, AND NOW I WON'T HAVE ANY?? I JUST DON'T HAVE THE ENERGY TO DEAL WITH THIS KIND OF NONSENSE! I HATE THE WHOLE WORLD RIGHT NOW."

But I don't say any of that.  I hang up and I burst into tears (and then I get mad at myself for bursting into tears because it helps absolutely nothing) and then I take a lot of deep breaths and I sniff and blow my nose and then complain to Twitter about evolution and then I come here and write this. And now it's after six o'clock on a Friday night, and I have no idea what I'm supposed to do next, but I have to go leave some (non-bawling, hopefully) messages on people's voice mails, so that somebody will help me with this before I lose what's left of my marbles.

---- And... I left a message AGAIN, but the office is closed. I won't hear back, and it's technically not an emergency, so I don't want to call the cancer care line (because that's his service: he's an oncologist). PLUS, the pills are 'controlled', so, even though I've been on them for 9 freaking years, AND you're not supposed to 'suddenly stop' them, they can't give me enough to last till Monday morning.

So, I'm betting I'm going to have the Best Weekend Ever.

I'm already taking a half dose, and it's reminding me that these pills do actually help a little. I am not looking forward to no dose at all. Off to scour all my backups - the travel pills, the purse pills, the bug out kit, - where I know there will be at least one or two hiding, and that'll bring me to Monday without having to no dose at all, hopefully.

But I think you can see why I'm hating the whole world right now. this should be so easy! it is not that hard! all it requires is four or five people to be doing their jobs at the same time ~ but, still -  Here I am. Hitting publish, eating a homemade english muffin pizza, and pretending I didn't just spend an hour crying about people being unhelpful.