*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!

Letting Other People Tell You Where I Am

Every morning I jump out of bed and step on a landmine. The landmine is me. After the explosion, I spent the rest of the day putting the pieces together.  Ray Bradbury

 “I want to think again of dangerous and noble things. I want to be light and frolicsome. I want to be improbable and beautiful and afraid of nothing as though I had wings.”- Mary Oliver

“Life’s challenges are not supposed to paralyze you, they’re supposed to help you discover who you are.” - Bernice Johnson Reagon

“I want so much that is not here and do not know where to go.” - Charles Bukowski

“There is no coming to consciousness without pain.  People will do anything, no matter how absurd, in order to avoid facing their own soul. One does not become enlightened by imagining figures of light, but by making the darkness conscious.”  Carl Jung

“It’s okay to feel the way you feel. You can feel angry. You can feel afraid. You can feel crushingly disappointed. You can feel bitter. AND you can feel the love.” Pace, 12-12

Mostly, I've been feeling the darkness, doing everything I can to avoid feeling the darkness (including some new obsessions which I will be back to share with you soon), and facing a whole bunch of things I'd really rather not face - about myself, my situation, and my future.  It's "figuring some shit out" time, I guess, and so far, I don't much like the stuff I'm coming up with.    I'm also having a super low-spoon issue - which is not news, but is particularly frustrating, because I'm used to having a set number of spoons - small but reliable - and without even those few spoons, I'm continuously frustrated with myself & my inability to get things accomplished most days.  I don't know if it's new meds (I think it might be), but I do not like it.  And coming at an emotionally taxing time, as well, that's not helpful.    

But I haven't been completely silent.  I managed to post over at The Band (the completely awesome, supportive Band Back Together) about one of my worst fears, one of the things that's most terrifying to me right this minute.  I've been active on Twitter for a bit, c'mon over and chit chat with me in 140 characters if that's your thing.  And I'm coming back here, because, as always, not saying things is hurting too much.  So, I'm here: trying to feel the love, and hoping y'all are feeling it too.  :)

In Our Night Kitchen

I feel like when you're arguing with a person with dementia (and it just may be my person with dementia, I don't know) that you are arguing with all the people they ever were, only each is closer to the surface than ever:  When she's battling with me over food (again) because she can't remember the last time she ate (even though it was less than three hours ago), I can sort of see her in so many stages of her life:

She's like a newborn, who's crying because it is hungry, and doesn't know how to stop that feeling.  And like a two year old, who wants to eat something, but when you ask what, can only say "Food!" and shakes her head in derision at every option you offer.  And like a teenager who manages to notch the arrow most closely to your heart while being completely absurd at the same time: "You want me to starve because you want to get rid of me, don't you?"  And like a wife who has never lost an argument ("Well, you just have an answer for everything, don't you?");  and a mother who brooks no nonsense ("If I've told you once that I can't eat eggs because of my cholesterol, I must have told you a hundred times: why can't you remember that simple fact???"); and the completely independent human being she is used to being ("Well, I'll just make it myself then!"). 

Plus you get the added bonuses of the paranoia ("You're trying to drive me crazy by changing all the clocks and writing down food that I haven't eaten"), and the confusion that comes from not being able to hear half of the things you're saying, and creating the other half out of whole cloth (I suggest toast with jam and butter, she hears peanut butter and jelly, which she hates with a passion and goes on a rant about how I only offer her things she'd never eat), but those are just the extra fun-features.

And of course, none of that is helpful, because I can't get her to listen to reason (I have listed off every single item of food in the house; I have shown you the dishes from your last meal, which still haven't been washed; I have offered to order in anything her heart desires) or to just eat a goddamn banana or something.     But I'm sitting here, hoping that this time when she wakes up she'll be somehow more reasonable, trying to regain my patience before our next round (and seeing it as a fight isn't really going to help you regain your patience, now is it, NTE?), and trying to remember that she's acting like this because of her disease, not because she hates me (which is how she is looking at me) or because she's trying to be difficult (which is how it feels when she's got a comeback to everyDAMNthing I suggest), but because she can't help it.

Now if only she weren't the single most stubborn person in the universe before she got sick, that might be a little bit more manageable. 

My Years of Magical Thinking...

And why I'm calling BS.


There's this idea out there - in the everyday world, in pop culture, in families the world over and sadly still in some medical circles - that you can believe yourself into being well (or that you somehow believed yourself into being sick in the first place).  That all that it takes is wanting to be better badly enough, purely enough, consciously enough, something enough for it to somehow "manifest" in your life.

The idea takes numerous forms - there's the curative power of prayer; the school of 'get up off your ass & do something about it, you whiners' (aka the bootstrappers); the 'but you've got nothing to be sad about/tired from/allergic to' zealots; a million symptom-specific diets; holy water & snake oil & pills made from coral only found in the shadow of the wreck of the Lusitania; and the ever adorable 'Oh we all get headaches/sad/tired sometimes, but you don't see me sitting around complaining about it' crowd.  Those are just a few off the top of my head - there's probably a thousand more we could come up with together (Feel free to leave your gravest offenders in the comments!) but they all have one thing in common - they take a person's illness or disability and make it not a medical condition, or a failure of society to accommodate the needs of that person - but a personal failing on the part of the individual.  They all nullify our personal (individual & cumulative) issues and needs and turn them into something we're doing wrong or not well enough.  And I say bullshit. 

This sort of blame, grounded in magical thinking, shows itself in everything from the rantings of politicians about benefit scroungers, to the old woman in the parking lot who yells at me for being too young to need a handicapped parking spot, to my super-crunchy sister explaining to me that all illness is rooted in "past personal traumas" and "touch therapy" might be the answer for me.  It shows in personal stories of achievement - converts of former patients who swear by whatever method happened to work for them, and preach about it now as if it were the One True Word.  I'm happy for them, truly, but can't get over the amount of gall it would take to assume that what worked for you and your illness must, of course, then work for me (or the millions of others of us who share a disease).  Just because you started running marathons on a diet consisting solely of cough medicine and peach pits, does not mean it would work as well (or at all) for me.  Thanks for telling me about it, now carry on with your business. 

But it's never that simple - the fact that there is a peach pit & cough medicine cure out there, and I am not attempting it: that's unacceptable in society's eyes.  I should be doing everything I can to fight against my illnesses, even if it's contrary to common sense, defies the constraints of financial, emotional or physical realities, &/or is the least likely antidote to whatever ails me & in fact, would make my problem a million times worse.  Society gets to pick if I'm trying hard enough, and {Spoiler Alert} I never will be!!

-----

I was 15 when I first got sick, nowhere near done figuring out what kind of person I wanted to be when I grew up, and everything I thought I  knew about my world & who I was just... ended.  I wasn't smart anymore, because I would sleep through my classes, and the time I should be doing homework, and miss weeks of school at a time. I wasn't a dancer anymore: after months and months of missing them, on days I could drag myself there, I would go to the one dance class I thought I could manage, do a half-ass job and then curl up in the corner on the gymnastics mats to go to sleep.  I'd gone from teaching three days a week & taking my own classes to barely limping through the basic warm-up at the barre.  

But no one told me to stop: My doctors said I was very sick, but that I "shouldn't give in", that I should "Do what (I) can." To a fifteen-year-old (well, to fifteen-year-old me, anyways) that was like a challenge - "go until you can't go anymore."  And that's exactly what I did: I worked so hard at school (even when I was homeschooling) that when summer came around, I was bedridden.  I still can't watch the show tape from that last year, when I lost out on my first solo and instead hobbled through the one number in the recital I had to nearly kill myself dancing through.  Afterwards, laying in the wings, waiting for my heartbeat to slow and my vision to come back (looking back it's likely my POTS/NMH issues were a problem even then), I thought to myself: "Well, was that worth dying for?" 

But I didn't stop pushing, because everybody told me I shouldn't.  My family constantly told me that I just had to keep trying, my teachers said that "surely, someone as smart as you can figure out how to beat this," my friends nagged that I'd been sick long enough, already, hadn't I?  I know that they were trying to be encouraging, but it was the only message I heard, that I had to battle, until I won. That it would be like giving up, to say that I might have to live with this illness instead of fighting against it. The doctors made sure I knew that if I started to "act like I was sick" I would only get worse: "Don't give in," they would tell me, "keep fighting."  So I did.  For (as it turned out, way too many) years.

My parents, armed with the same doctor's advice - "don't let her give into it, because then she could be sick forever"- were as ill-equipped to deal with our new situation as I was.  Never mind that I was sick right then and that might have been important to deal with.  Nope, the now was always about the fight,  and so we spent a good portion of what was left of my teenage years fighting against the CFS, and often against each other, when it seemed to them that I was "giving in" to it:  When it got to the point that I couldn't eat, and I lost about 35 pounds like it was water weight, I can remember having screaming matches with my dad at the table where he would say such helpful things as "JUST PUT IT IN YOUR MOUTH AND EAT IT FOR CHRIST'S SAKE!!!" and I just... couldn't.  It tasted like ash - everything did - and burned all the way down, where it would sit, heavy as winter boots until my belly revolted and back up it came. I would cry and he would yell that I was making myself sicker, with the crying.   Or being in the car on the receiving end of glares from my siblings, when they all wanted to go someplace and I was too exhausted to move, let alone get out of the car again, and my sister closing the door, rolling her eyes and saying "Well, I guess, if you're going to be that "sick", we'll all just stop having fun now" as we drove home.

We didn't know, is my point: Nobody gave me - or them - the skills. Maybe, with something like an aggressive cancer, the doctors would've been right on target - 'fight back, till its gone: take no prisoners, grant no quarter!'  But I had something nobody knew what to with, a chronic illness with no known treatment, cause, cure. And so their advice was way off the mark. It was like I was diagnosed with CFS (and later Fibro & POTS & now the diabetes, not to mention the 14 other things in between and the one big question mark they're all still looking for as the Holy Grail) and instead of a treatment plan, with meds to take and dos and don'ts to follow, all they told me is "You have it, but pretend you don't, as much as is possible."  And that was some damn bad advice.

It was wrong and dangerous, and it could've been - on more than one occasion for me- deadly.  (Turns out ignoring pneumonia is potentially a bad thing: who knew?)

That's why this fallacy of magical thinking gets me so upset - because it took a fifteen-year-old girl who could have learned the skills she needed to manage a chronic illness and continue to live a full (if different) life, and left her helpless, terrified and vulnerable. And blaming herself.  

-----

So, I didn't have the skills, or the treatment plan, or the answers, but everybody kept telling me that they were out there: keep trying till you find The Cure. So I tried all the crazy shit that you think you are not desperate enough to go near: pills with high price tags and exorbitant claims; cleansings and energy work and fasting rituals; diets and doing an hour of PT every Friday that takes you until Thursday to recover from; pushing yourself way beyond what your body is actually capable of.  The doctors might roll their eyes at my latest endeavor, or be all for it -"couldn't hurt" I had more than one of them tell me, even though they were 100% wrong-  but they didn't have anything better to offer, so it was up to me to follow the magical thinking train as far as it would take me.

It goes pretty far, you know: you work so hard at convincing yourself that you're getting better, while your hospitalization rate soars and your immune system falters.  You can laugh with the doctors about that "last bit of voodoo you tried" all the while you're planning how you'll scrape up the money for your next.  You can fuel that train with all of the self-hatred you accumulate when people tell you that you're just being lazy, or that you're faking, or that if you really, really tried, you could do it.  (That's a never ending, renewable resource right there: look, I fixed the economy!)

But in the end, it didn't matter how often I thought maybe this pill was helping or that I just had to make it through the next 14 sessions and the acupuncture would clear everything up.  In the end, I was sicker than when I started, discouraged at myself for failing and certain that if I just tried hard enough, like everybody said, I could beat this thing.  

---

There's a lot of maybes about my illnesses - maybe if I'd never gotten the mono, it wouldn't have switched on whatever self destruct sequence is probably hiding in my genetic code, or maybe if I'd gone to see a specialist right away s/he would've recognized the problem before it spiraled into today's current chaos. Maybe X or maybe Y. I don't know about any of that.

But there's one certainty about the whole mess: It could've been better.  My experience did not have to be as hellish as it often was.  It didn't have to be as isolating, and full of blame as it was: Because everybody - from my teachers to my sisters to my grandmother who couldn't understand why I'd cry when she suggested I go to a faith healer - blamed me at some point.  I'm not saying it would've been a land of rainbows and puppies - hell I don't buy into magical thinking now, and my life is certainly pretty puppy-less - but it could've been better than what it was.

And that's where society and medicine and the world with all of it's "The power of the Secret of thinking with your wholeheart and wanting it with your entire being" bullshit failed 15-year-old me, and 32-year-old me, and the 3-year-old with learning disabilities that I used to tutor, and my sister who has depression, and basically every disability activist I've ever met; and every person with a disability, and their families and my parents, and, well, the whole world, honestly.  It isn't enough to wish it away - that wishes us away, too.  It doesn't honor who we are to be told that we're just not doing enough to be well, or that we worried ourselves into being sick, or that if I looked on the bright side more often, I would somehow no longer be allergic to all of the contents of the natural world.  It's bullshit is what it is, and I'm going to call you on it, now that I know it for lies.

----

It wasn't until I got to college and started meeting other people with disabilities and allies and advocates and started paying attention to the people who said: "Listen, it might get better: You never know, you might wake up tomorrow and be healed and awesome.  But there are ways to make today easier to live through, to be awesome with a chronic illness, and one of them is NOT FIGHTING quite so much.  It's accepting that you're sick.  You're a sick person, a disabled person, and ... you know what?  That's fine, too.  You're not lesser, or weaker, or anything negative because you're sick.  You're just sick.  It's a part of who you are, and you need to deal with it, because this fighting with it is just making everything worse." 

I cringe to remember my Freshman self, saying to a professor that I was "Not disabled: just temporarily out of service."   She was polite enough not to say anything, but I want to go back and punch myself in the face for that flippant nonsense: I really thought that not claiming part of myself would be beneficial?  For who?  Was it supposed to be funny? It seems absurd and sad now - I don't even know. I do know that when I finally made myself face the fact that all of this magical thinking was getting me nowhere, was in fact hurting more than it was helping, it was devastating to me: Not being able to cure myself, I must instead of course be a complete failure.  (It was this all or nothing attitude that really helped my depression stay around as long as it did, unfortunately.) There was no middle ground for me, and realizing that people were wrong and I wasn't going to be able to think myself better?  That all the pushing my body through shit was actually making things worse?  It was like stepping out into empty air yet again - I had no idea what could be next for me, if everything I knew how to do - if fighting & believing that it could all just magically go away one day - was wrong.

But once I got past that, once I accepted that truth, I learned so many ways to make my life better, to make it more meaningful, to work towards not just marking time until I got better, but living through that time, because this is my life now.  It's a life with chronic illness, and yeah, I'd rather it wasn't, but wishing doesn't make it so, so get to living & dealing with it, because it's a part of my life, but it's not all that I am.


And that's a truth I worked long and hard to find - and it still takes some work to remember that it applies to me - that there's societal constructs at work behind my feeling of just not doing enough to fix myself, and that I'm not really a lazy, layabout who'd rather play on the Internet all day then get a real job. That 16 doctors appointments in the space of three weeks is more than enough, even if they're not giving me the answers I need.  That eating french toast today instead of a salad like every other day, and is not the reason I'll obviously never get better.  To remember that there are reasonable levels of self-care and coping strategies, and then there's just plain false hope.    

And the idea that I might have gotten to that point so much sooner if somebody had been around to say to me "Magical thinking isn't going to cut it. There may a cure out there, but it's probably not going to be found in this guy's car trunk." (True story) "And as far as I can tell, there's nobody around to provide you with a deus ex machina, so get to living with this instead of waiting for it to get gone."  

But that's why I talk about magical cures when they pop up in what I'm reading or watching.  It's why I get into arguments with the people in my life who dole out advice on seaweed pills along with our shared breakfast. And it's why I'll keep talking about it here. Because somewhere there's a fifteen-year-old girl, with an illness she did nothing to cause and she can do nothing to get rid of.  And she deserves to hear the truth. Not the fluffy, Secret-based philosophy of pseudo-cures and self-blame.  But the facts: That chronic illness & disability are just another part of life, and you can deal with them, and treat them, and live with them, and even thrive with them - to the best of your ability - but you can't, not ever, think your way out of them.


 *Welcome to all the Blogging Against Disability Day readers - I know there's a million great posts to be read, so I really appreciate it if you made it all the way through that!  If you're one of my regular readers, please head over to the Goldfish's place, and read some of the other excellent BADD posts: I promise, you'll learn a lot.*

guess what?

I stopped writing again.  And taking pictures.  And talking to people outside of my house.  And doing anything just for fun.  Not all the way - there was some writing, and some fun, and some pictures, but for the most part?  I just stopped.

Which, if you've been here any length of time, you might recognize as a sign of Very Bad Things. 

And there were some Very Bad Things -

 -  My grandmother has been getting worse, then better, then worse, then better again for months now, and a very large part of me wants to shut down what I'm doing here at home (which isn't much, to be honest) and move in over there again.  If I thought I would be a real help, I would do it in a second.  But right now, it's all just question marks, and 'why is she getting worse?' and 'but now she's better so let's forget about figuring out why she was worse: send her home', and so much nonsense. 

-  I saw a "pain specialist" at the pain clinic that Zack sent me to and he came in the room, looked at me and my chart and said "I have nothing good to tell you and you will leave here disappointed."  Disappointed didn't really cover it, though, because, against all of my self protective instincts, I actually go into these things hoping that they'll be able to help (god forbid!), and I left the appointment wanting to set things on fire - my mother said she couldn't think of a good place for a fire, however, which was also disappointing.  He told me nothing new, gave me the 'stay the course' speech, and still, by the end, when the nurse came in to give me the 'you can go now' part of the speech, and she was very sweet and conciliatory, I wanted to burst into tears - she knew that he wasn't going to be able to help me, I knew it, Zack knew it.  Doesn't matter, for some reason.  Still felt like getting kicked in the face, one more time. 

- Things around the house have been... I guess awkward is the best descriptor I can think of.  The not drinking is going really well (at least in the house: there is an increase in dinners out of the house, just my parents, and I don't believe those are totally sober, but you have to go with what people tell you until they prove otherwise), but it's still awkward.  There are things you can't say, places you can't go.  And there's still the belief that an apology is enough, which I am not finding to be true.  He has said he's sorry, but ... i don't know how to get across to him that he has things in our relationship that need to be repaired, that require effort on his part.  He thinks the not drinking should be effort enough, and I am conflicted about whether it is or not.  (It feels like it should be, and also that it shouldn't be: that makes no sense at all to anyone but me, I am sure.)

- There's a distinct lack of children.  What with all of the kids being in school (or two hours away), there are only weekends and vacations during which I can be around the little people I love.  (Also: note to self: there's really only one 'little' person left, and he's two hours away.  The kids I see regularly are going to be 6 and 12 (!) in less than a month.)  I love that their growing older - the depth of stuff we can do: book signings and museum trips and dollar store challenges - is ever expanding, but I'm also kind of sad that there's no little bits to tuck in for nap time or sing silly songs with.  Only Lil Girl came to decorate eggs this week - her big brother was busy playing hockey.  It was the first time he was 'too big' for something like that, and there was a definite twinge in my heart area: I do not know what I will do when it's time to visit Santa and he rolls his eyes and says 'no thanks.'   

-  There's also a distinct lack of my children, and the reality of that perhaps being a permanent situation is starting to feel overwhelming.  I know it is not impossible, and I know there's still some time left for that to happen for me, but ... it's not on the horizon, if that makes sense.  I can barely function most of the time, healthwise, and I can't see adding the complications of children into the mix.  At least not now, and not now, I'm starting to realize, has been going on for at least ten years.  It's starting to get to the point of 'if not now, when?'   That's a really hard question to answer, for a girl who's always wanted to be a mom, but can't see how that would happen.

-  Then there's assorted what the fuck-ery: my SSI getting screwed up (for the second time since December), and having to deal with all the phone calls that entails; this whole diabetes, math at meals thing, which is like torture because there are so! many! numbers! and I hate numbers; all of the stuff that I'm supposed to be doing in the house that isn't getting done; random infections; other family members' health issues; and on and on and on.

So there's been some stuff, is what I'm saying.  But not writing about the stuff gets me into trouble, so I'm re-committing (for the Xth time) to writing here more often.  At least once a week, hopefully more.  About stuff that matters, not just random gobbledegook.  So I shall see you all back here, very soon.  Till then, be As Well As Possible.

In the ball pit

I do this thing where I start thinking - really thinking - about something that's important: Have you noticed this about yourself?  Is there a reason why you have to run your mouth like that/act so awkward around new people/ be unbelievably cranky for no good reason?  And as soon as the truth about the thing starts rushing at me - as soon as I'm starting to get to the meat of the issue, or when it starts to sort of click in my head that this is not a unique occurrence, that I sometimes act like this and maybe it is a pattern... well, when the truth starts rushing at me, I start rushing away.  Is there anybody who needs tending or talking to, or playing with?  Isn't there a show on right now that I can escape into, be mindless with?  Isn't there a book I could read that would take me anywhere but here, facing the truth?  It's such an uncomfortable feeling, this realizing things about yourself, and I would do just about anything to avoid it, I think. 

When it does come, and I have seen the whole, frustrating, ill fitting truth about myself, it sticks in my brain: a large scaly burr just big enough and irritating enough to block out anything else.  I have no other qualities except  this uncomfortable truth - I am no longer a good person, a caring sister, a hard worker - I am only an inveterate gossip, a gigantic fraud, a loathsome individual who feels lonely until she's with people and then wants nothing more than to be left alone.  Even though I know that this is not true - that all the good things I am or do are not obliterated by some newfound/newly understood flaw in my character - it is how it feels, and sometimes how it feels is how it is. 

I have recently come to quite a few uncomfortable realizations about myself, and trying to integrate those things - a certain pettiness here, a confounding inability stick to the straight facts there - into my vision of who I am is proving more difficult than I'd have guessed. I have always known that I wasn't perfect ~ contrary to what others may think, I am well aware that my goody-two shoes image is just something other people see me as - I have never seen myself as such, and wouldn't really care to.  But these inconsistencies in my character - the difference between who I want myself to be and who I really am, these are things I want to fix, to change.  And that means recognizing them first, figuring out how deep they run and (maybe) where they come from, and how to stop doing them.  It's a lot of heavy mental lifting, and, for a person who has limited reserves of any kind of energy - physical, mental, emotional - it certainly seems Sisyphean. 

So I keep looking for low energy escapes - can I ever get my Google Reader below a thousand again?  Is Reddit being entertaining or insulting today?  Is there any way I can get my uncle to have a conversation with people so that they don't think he's an ogre? Let me organize every photo you've ever taken in your whole life! - and then condemning myself for needing these escape routes.  It feels like I'm stumbling around kicking at little pebbles, all the while trying to avoid all the heavy boulders I know I have to move if I want to move forward, but just can't even look at yet. 

It feels that way about everything - about all the work I have to do to manage my illnesses (and the question of when I decided that just 'managing' is enough for me), about all the things in my own behavior that I'd like to change; about all the topics in my family that need addressing, and all the ways we find of not addressing them; about not making time for friends and then wondering why they aren't making time for me; about the world as a whole and all the things spinning out of control in it.  It just feels like there's too many important things that should get looked at, poked at, lifted up and examined, fixed, and I don't want to touch a single one of them. 

A perfect example in the physical world is that my space is still not undecorated from Christmas - oh, the actual decorations are down, but the furniture is still all in the wrong places for every day living.  Thus making it more difficult to do things like get towels, because we moved the cart that holds the towels behind the chair, so you have to climb over the chair to get ready to take a shower.  It's little ridiculous things like that, but also huge life changing things like deciding to call the PT again, and see where that takes me, or actually changing my diet enough to prevent this diabetes thing from happening - and I just don't want to face any of it at all. 

And here I write the necessary caveats that "we've all been sick since Christmas! - and I mean sick sick, like the flu that won't die sick" and "I've just spent two months caring for a wonderful lady, whose head is harder than the stairs she fell down!" and "blah blah blah Chronic Illness, you idiot!" but all of that  - while true and real and just so much - doesn't feel like enough of a reason to let everything else pass me by.  I never feel like I am juggling half of the balls I need to juggle, there's just me, standing with maybe the three or four largest, most fragile balls, throwing them up and catching them (sometimes by the skin of my teeth, but still, catching them), and all the while, the floor around me is littered with a million other smaller balls.... It's basically me, standing up to my waist in the ball pit of Chuck E Cheese, trying to catch all these biggest balls, but knowing I've let a thousand more go.   And not knowing which of those thousand was the next most important - the one that needed me now, and I won't get to it for another three weeks.

I don't know what to do about all that - how to climb out of the ball pit, or juggle better, or even begin identifying the colors of all the stupid things I'm standing in.  I know this feeling will pass, or fade, because it has in the past, but it never goes away... I'm always fumbling something, and I wish I knew how to stop. 

On the plus side, we all apparently survived the end of days

In an apparent effort to ensure that a member of our family has to visit the hospital at least once every two weeks, my 94-year-old grandmother fell, face first, down the fifteen (thankfully carpeted) stairs in her home early yesterday morning.  My uncle heard her fall and rushed down the stairs, where she was gushing blood from a nasty gash on her forehead, struggling to sit up, and frantically asking him if she had gotten any blood on the new wallpaper.  (She had not, in case you, like she, care about that at all: I, in case you were wondering, do not.)

I spent most of the day today at the hospital with her, where I was shocked at her battered appearance, although, I don't know why, since she fell down a flight of stairs - she's mostly black and blue, with two huge cuts on her forehead, as well as numerous smaller cuts on her face.  Her main injury is a broken shoulder bone, which was immediately operated on, because it was putting pressure on (or cutting off ? My uncle is not so good at communicating medical stuff) an artery.  She has various pins and screws holding the arm in place, and the artery was repaired by a graft, but she's in pretty tough shape.  Between her head injury and the pain meds, she wasn't completely on target while we were there - the nurses kept asking us if she was usually more lucid, and I said that she never takes more than an aspirin and she banged her head up pretty badly, so I thought she was doing pretty well, even if she did say "Bahama" was the president, and that we were in a library that she was afraid would be closing soon.  (Also: it is December 28th, 2012 - hence this post's title.)

They're talking about weeks of recovery - hospital and rehab - and this is her second go 'round with all of that, so hopefully it will all go as smoothly as it did last time.  I'm just glad she's doing as well as she is... it was pretty terrifying to read my uncle's e-mail ( I mentioned, about the not being good at communication, right?), and then seeing her today was pretty rough as well.  But tomorrow will hopefully be a little bit better, and we'll get this healing show on the road. 

After all, we have to be in fighting form for the apocalypse, right? 

PS - why do hospitals have to smell like that?  It is hideous. 

More of other people's words

Before my *new, less than a year old* computer literally starts smoking (it smells like burnt hair), I wanted to say hey! But I have no thoughts, so I'm just going to share some of what other people are thinking instead.

“While people around me start to relax, I keep my eyes on the sea, waiting to be rocketed into it in a wave of fire. I’ll be ready for it to happen, and therefore it won’t happen. It’s a burden, being able to control situations with my hypervigilence, but it’s my lot in life.”

Tina Fey, Bossypants (the best book I've read in a while).

"there are your fog people & your sun people, he said. i said i wasn't sure which kind i was. he nodded. fog'll do that to you, he said. "

from Story People

“Sisters will leave scars on your body—and your heart. No one in the world can betray you with quite that eye toward perfection, and no one will ever regret it more.”

Barbara O'Neal


And because I need to remember it:

“Don’t look over your shoulder to see what relatives are perched there. Say what you want to say, freely and honestly, and finish the job. Then take up the privacy issue.”

William Zinnser, American Scholar, How to Write Your Memoir

Postage Stamp Island...

As much as my brother-in-law might laugh at me for attempting to rap (or, more accurately 'sing a rap song',) my current life resembles nothing so much as the line from Grandmaster Flash's The Message "Don't push me, cuz I'm Close. To. The. Edge. (I'm trying not to lose my head)"


My pain has been turning it up to eleven lately, following a couple of infection setbacks and my dumb insistence that I do not need as much down time as my body thinks it requires (because "downtime is boring!" ... So is suffering, you ass). Because of that, I am living with the near constant feeling that my muscles and bones are attempting to burst through my skin, as if I've taken some excess Skele-gro* without the accompanying broken bones. You know how on the Hulk (original TV show Hulk), his eyes would glow green, and then his clothes would start falling to pieces as he just expanded into this terrifying green monster? Yeah, it basically feels like that, complete with bonus "Hulk Smash!!!!#!@!" anger because who the hell wants to feel like that? It hurts to breathe, or move, or put clothes on - I literally cried the other day, when we had to leave the house and I had to put on a bra. (And yes, I know it is beyond stupid to put whether or not you look good over whether or not a piece of clothing makes you hurt so much you cry, but I can't get over it: Leaving the house without my bra makes me feel naked and not in a good way.) Sleep is a joke, because rolling over in bed is as dangerous as rolling through a field of landmines, and the other day I just got up and baked cookies at 2 in the morning because if I laid there for one more minute, I was going to flip out.

This is usually the point where my readers who don't have chronic illnesses say something like "Why don't you call your doctor and tell him/her that you're hurting so much?" And I appreciate the thought, I really do, but here's the thing: My doctor's know. They know, and it's not that they don't care, because they do - it's that they don't have the answer for me. They just don't know it. They keep trying - I am, in fact on my third new medication trial in as many months - but if you don't know the answer, you just don't. So calling them and telling them that I feel like the Hulk, it doesn't get either of us very far. "Give the meds more time to work" they say. Or "Did you take the narcotics I gave you - you don't have to be a hero" Right: because wanting to be present, even vaguely in my own life, is heroic. No - I am medicated to the gills, as much as I can be without just being completely out of it (and I can't guarantee that either, sometimes), but (so far), we just don't know the answer.

So there's that. But it's not just that: I feel near the edge on just about everything.

While I won't be homeless if the government decides to go offline this weekend (as I know some will), if it continues for any length of time I will be medication-less, which, for me is quite a serious condition. (I depend on my government to allow me to breathe: what do you depend on it for?) There's no way I could afford the $400 required for a 30 day supply of one of my medications, let alone the over a thousand dollars that would be their sum total - and that's just for the basics, not the 'optional' things like the stuff I use to treat my allergies or the cream I use when the allergy stuff doesn't work. Financial worries would start building if the government was shut down for any length of time, but that's biting off more worries than I need, at this point. But we're there - at the edge.

I'm at the edge with my family, with sisters who are so hurt and angry and frustrated/ing that I just feel like everything I do is wrong. With my mom who's obviously hanging on to her own edge, but won't admit it. With my dad who's having problems at work and thinks it's funny to come home early and say things like "I got fired." (Hint: it is not funny.) With pregnant cousins and non pregnant me, with sisters moving to freaking Iowa or getting married (with no plans, yet!) in the fall, and brothers who don't see the glory of their own children. With a grandmother who asks you for help picking out her funeral clothes when you go over to visit her, in the same breath that she tells you how well she is doing. ("It's not morbid: it's practical. I'm going to be 94." Well, let's be the opposite of practical, then, shall we?) With best friends who don't call or write, and with myself for not calling or writing.

I'm just so close to the edge that it feels like everywhere I turn, there's another edge. Like I woke up on an island, all of the sudden, instead of a continent. Like there's no place safe.

And yet, between me and those edges are little girls with curly hair who say things like "My tooth is loose, even though you can't feel it move," because the girl down the street got money from the "Tooth Bunny". There's 11-yr-olds who direct their own 60 second movie clips on low res digital cameras, that include such action packed sequences as "Fort elephante & how it crumbled!" There's three derpy fluffy bunnies made out of pom-poms and googly eyes, named KC, Sunshine & Band. There's meringue cookies at two o'clock in the morning, and the fact that I can make them sans recipe. There's the fact that the nurse at Zack's office, the much loved Maryellen, worked for five days to get the approval I needed for this latest medication, even though the MassHealth people were being assholes about it. There's Facebook statuses from people far away that I miss very much. There's the fact that my window is open right now, even though it's freaking April. There's all these words typed into little boxes all over the country that show up on my screen, right here on my bed. There's a lot of stuff that pushes me back, and I try to remember it.

The edges are still there though, and my island's getting smaller.


Print Available Here

*Shout outs** to Harry Potter, the Hulk, KC & The Sunshine Band and Grandmaster Flash in the same blog post? Yeah, I'm complicated.

** Using the term 'shout-out'? No, you're really not.

Anger.

It's a simple word, but a complex emotion. Something familiar to everybody, but still absolutely unique to each individual. And, I realized quite recently, that it is the main obstacle I've been facing (for the last however long) when it comes to writing anything of substance in this space.

Sure, there's been the holiday havoc, and the shingles before that, and the family members' health crises and the three months away from my own home before that, and about a million other, tiny in comparison, issues that keep cropping up, but I've written through that kind of stuff before - I even sort of wrote through it this time. But more often then not, five years, and a gazillion stories and shared emotions into this blogging thing, lately every time I opened the little Blogger tab on my computer, I would find myself struck - and stuck - with all the things I couldn't say.

All the things I have been so angry about that I can't talk about in person - either because I can't figure out how to say them or because nobody actually hears them no matter how loudly I say it - just sort of clumped up in my brain, letting little drips and drops through here and there, but bottling up most of what could actually be said. And the thing about it was, that I didn't even realize it was anger that was keeping the words from coming until I started to let some of it out. I knew there was something: a wall, a block, a barrier between me and the world - even here in this virtual world - but I couldn't figure out where the wall had come from, or how to take it down.

And I still haven't figured it all out, but over the past few weeks something has been made abundantly clear to me (and probably to those people in my life who are paying any attention at all): I am pissed off.

I am pissed off about so many little things, and so many huge things, and just So. Many. Things. And it has shut me down.

It has turned off the flow of words from my brain to my fingers, so that when I come here to write something, all I can think to say is "Things here are busy/crazy/overwhelming, check back later." But I'm not satisfied with that, so I wind up writing nothing and hoping that you all haven't wandered away due to my inattention.

It's shut down my patience, which I'm supposed to have an unending supply of, because that's what people expect of me - To the extent that on Christmas Day I had to lock myself in my room and cry for ten minutes before I could come out and face people again because they were getting on my nerves so much. And the things they were doing would not ordinarily bother me that much, so I know it wasn't just that they were being assholes (even though they kind of were).

It's shut down my ability to put up with crap: I feel unable to take people's shit anymore, and want them to know and to see it as truth that I Am Done. Even the kids are getting a whole lot more of "does this look like my serious face or my joking face? Because I am not joking and you're going to want to stop it right now." I feel like all of my boundaries have been trampled over and over again so I'm left, walking the lines, retrenching, protecting myself - even if that means being overly sensitive and shooting anyone who comes within sight, deservedly or not.

It's closed of my sense of empathy and sympathy - particularly with myself: I am so upset with myself for being upset that I go around feeling like a heartless bitch and expecting people to treat me as if I am that. (Even though I know I'm not.)

It has also shut down my ability to express emotions with any clarity, in case you couldn't tell from that last paragraph. I keep thinking things like "I'm sad; but why?" or "I am feeling such rage right now, and it is out of proportion to the situation we are in, but I can't tell you why I'm feeling it." And it pisses me off even more when someone says something about it ("You seem tired/upset/not your usual cheery self." No, really: gee thanks.)

'So,' you might ask, if you have made it this far into this unending rant about... everything, 'NTE, why are you so angry?' And that's just the thing - I'm angry about so many things, only a quarter of which I can put an actual label on.

I'm angry with passive-aggressive commentary from my family, the kind that I'm just supposed to shrug off and pretend doesn't hurt me, and I'm angry with myself for making those same kind of remarks to them. I'm angry with my illnesses and doctors and the frustrating lack of ANYTHING that I've been confronted with, yet again, this winter. I'm angry with the ableist/racist/sexist/---ist discussions that take place around me, and that I'm not supposed to get angry at them, because that makes me "holier-than-thou." I'm angry at what a shit year 2010 turned out to be, and all the ridiculous drama that 2011 is already holding for us. I'm angry that I'm not doing more about all the things I know only I can take care of, and I'm angry at people who aren't taking the actions only they can do to fix things. I'm angry that there are situations I can't control, and yet I spend all my time trying to control them. I'm angry about things that shouldn't even enter into my life, on other people's behalf. I'm angry that no one seems to notice I am angry. I'm angry about the fact that nobody else is as angry as (I feel) they should be.

I'm angry with myself, with my body, with my family, with my doctors, with the Internet, with the world. I'm angry at my thoughts and feelings, and the fact that they buzz around in my head and heart and stomach incessantly, but when I try to get them down on paper, they become harder to grasp then vapor.

I'm just angry. Mad, frustrated, ranting, coiled, incensed, enraged, inflamed. All of those. And it's painful to be this angry, and to be keeping it all inside.

So when I finally (and I do mean FINALLY, because I have been feeling this way since, at least September, when my Grandmother had her stroke & I wound up semi-homeless again & my doctor told me that my shingles were stress-related hives instead of Listening To Me)... When I finally realized that this emotion that was bottling everything else up, that was clouding all my other emotions and dulling them to the point where I wasn't even feeling them sometimes, was anger, I decided to let it fly. I'm not keeping it to myself anymore. I'm trying not to aim it indiscriminately or disproportionately, but I'm not keeping it all bound up inside of me anymore.

Which may or may not bode entirely well for this blog and what it might become over the next little while, but I'll tell you one thing it definitely will be -

More honest.

Because part of the reason I haven't been writing all that much is because who wants to hear the ranting of an angry woman, especially if she doesn't even know what she's angry about? Would I keep reading a blog like that? I don't know for sure, and I can't answer it for you either. But I think I would, because it's true. And that's all I ever require in whatever I'm reading... that it come from a true place. And that's all I should require from what I'm writing too.

So if mad is what I'm feeling, mad may be what you get. But at least it'll still be the truth.

Welcome to 2011, everybody, let's hope it gets better from here, and if it doesn't, come join me in being righteously angry... because the only way through it is through it.*


*I can't remember which AA or Al-anon or substance abuse program pamphlet I got that from, and a Google search only shows up random religious theologies, which I know is not where I got it, but it still applies. Or, if you prefer: "If you're going through hell, keep going." Winston Churchill

I am not feeling any more like writing today than I did yesterday, which is not unexpected, but damned inconvenient as far as my NaBloPoMo / 30 days of truth posting goal goes. But who says it has to be thirty consecutive days? Not me.

So howdy. That's about all I've got to say today.

It's nice to be home in my own bed, and I am so exhausted that I have barely moved from it for the entire day. But I'm trying to take my own advice: I spent so much of the past two months I kept telling Grandmother how she had to listen to her body, all the while feeling like a hypocrite because I was ignoring mine as much as possible. I do not regret it, because it was necessary, and because, before I left both Grandmother and UJ pulled me aside (separately) to tell me that they didn't think she would have recovered so well or so quickly without my help. I don't really believe that, but I do know that I helped as best I could, and that, if nothing else, I was a good listener for both of them. So, no: no regrets, but boy were there some difficult physical challenges for me these past few months. But I'm determinedly taking my own advice today, and listening to my body as it yells, screams and cries out for r e s t . In my nice comfy bed, which I have truly missed.

I'm going to keep trying to stick to the schedule, so the plan is to be back here tomorrow. Be good until then. :0)

I personally think we developed language because of our deep need to complain.*

Day 16 Someone or something you definitely could live without.

Off the top of my head, just today? Here's a partial list:

Hives; the (holy crap why is it on so often when they have nothing new to say) news; days without naps; days of truth topics that sound like days of truth topics I've already written about. Children & grandchildren who don't call their grand/mother (especially if they know she's worrying about them); drama; George W Bush (I don't care if you 'wrote' a book - I am not going to read it because I do not want to cry, so shut up and go away); strep throat. The ideas of political compromise and lame duck congress; hives; earworms; 24 hour days (what's up with that? 24 is not a good number. It is not a number I can get things accomplished in.); medication side effects; cigarettes; that guy on the "news" who is paid to give his (ridiculously uninformed) opinion; anybody who's going to see HP7 before I get to, even though I already know the end of it. Nights with no sleep; stairs; asphalt sidewalks (or brick sidewalks, alternatively); roots; hives.

That should count us for the day, yes? Because I am sure if I really put some thought into it, I could get a good steam going.

*Lily Tomlin
-------------------------------------------------------------------------------------
Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself

I know the internet doesn't care

about the heat, but my body does. Other things it cares about that I would rather it didn't: the smell of food cooking in neighbor's yards; the smell of photos that have been living in a smoking house for 30 years; the smell of low tide, over a mile away; any smells, ever, in my immediate vicinity; our new summer schedule with the kids (MWF); the damn sun; every movement I have to make; about a thousand other things.


I find that I am easily, easily frustrated right now, and I hate it: I feel whiny and petulant and ungrateful. Nothing is horrifically wrong - nothing new is happening, and yet, the fact that my face isn't better, the fact that I'm too exhausted to help the kids check things off our "Stuff we want to do this summer" checklist, the fact that the incessant humming drone of the air conditioner is driving me batty - it's all making me feel cranky.

We don't have the kiddos till Friday this week, since their parents have some vacation days this week, and so I've little distraction from my crankiness, and that makes me feel even more ridiculous, because I'm depending on a 10 year old and a 4 year old to distract me. They are a great distraction, though...

You wouldn't know it by this post, but we've had to declare this the Summer of No Whining at our house, because Lil Girl is smack in the middle of a very whiny phase. (Says the woman who just whine-typed for five minutes straight. Does it count if it's on the internet?) She's catching on pretty quickly - since we can't hear whining, she doesn't get what she wants, so she changes her strategies swiftly.

Aside from the whining - and fights over who gets to sit where in the car that I remember all too well from my own childhood, and NOW I get why we all eventually had assigned seats - they've been great so far. They usually are, but now that they're getting older, we're trying to schedule more outings... having them (and us) all cooped up in the house all day everyday is just asking for trouble.

Last week I sat on the bandstand at the beach while Mum and the children wandered around looking for shells and rocks (They brought home quite the collection). We watched planes come in (Logan's right past the beach), had lunch, blew bubbles, and decided to come back for ice cream next time.


It was a pretty great day.

I was going to add a "but" to that last sentence, but I'd rather not: No more whining. Besides, it was a pretty great day, and I need to remember that part, let the rest of it all go. Let the Summer of No Whining commence, and help me to remember that it applies to grown ups and not just four-year-olds.