*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!

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.

Oh, so much, so manyies.

So what's going on in your brain these days, NTE?
Oh, so much, so manyies.

For example - I had a doctor's appointment yesterday (after taking a little doctor free time over the holidays, except for emergencies), and my new-ish primary care doctor - who I don't particularly like but originally signed up with because of his being in the same hospital as Zach, but is now pointless, because Zach moved to a new hospital - started things off on a lot of wrong feet. 

First, he and his nurse totally ignored my POTS diagnoses and commented positively on my low BP reading, even though my pulse was still sky-rocketing from the effort of getting to his office. Newsflash, doc: low blood pressure is not great for everybody, and it's particularly not great when your pulse is up near 145. 
Next, he started talking about somebody else's blood work, because he was looking at the wrong file on the computer. And his nurse tried to stick me with a needle AFTER she told me that she's been having a 'day when I drop everything'.  I'm sorry: no? No needles now, thank you, drops-things-a-lot.

 Then he started to extol the virtues of exercise - even 'any little bit I could manage' - while I was explaining how I didn't think my POTS issues were improving. Right, because all I need is yet another person telling me how I'm not trying hard enough. Particularly a person with a medical degree who should be able to read the report there on his computer (if he's even looking at the right one) from the cardiologist last month that warned that my heart issue were 'potentially life threatening if left unchecked,' and recommended 'one step above complete bed rest.' So, maybe starting a conversation about bench pressing (even if you are only talking about cans of soup or vegetables) is a tiny bit premature. Just saying.

Needless to say, it was quite frustrating to leave there with very little actual help, BUT - silver lining time - I have an appt with Zach next week that is sure to go better. (And by 'sure', I mean, please Dieties let it go better, because it will be my 1st appt at Zach's new hospital, and we all know that new people aren't always great.)

Continuing in the silver lining vein, however: My mom got a job! (Aside from her PCA-ing for me job, I mean) She completed a CNA course during the fall, and rocked the state licensing exam, and now she's got her first non-me job in I want to say 20 (?) years.  She'll be doing CNA/PCA stuff at a group home & in individual houses in a neighboring city ~ her orientation is Thursday, so she's not sure what her days/hours and stuff will be, and while that will be an interesting complication to have to work around re: doctor's appointments,  I am SUPER proud of her and I know she's going to be great.

Hopefully this will be more than just a money making opportunity for her (although, that's definitely not going to hurt) - I'm hoping it will help her feel more confident about herself and her skills, and really give her something that she feels proud about as well. These last couple of years/months have been difficult, and the next few months don't look to be conflict-lite either, so I'm glad she's got something to give her a much needed boost, right about now.

She also started telling people what's going on here - mostly the basics, that they're splitting up and we'll all be moving to separate places, at some point in the near future. There's a lot still that people don't know (mostly because even people who should care to ask have not thought to ask, and I know that that has hurt her as well), but I think just getting it out there to a few crucial people has been a relief for her. Some of the responses were unexpected - one sister started to ask if that meant that she would be dating, immediately squicked herself out and told her not to answer; UJ has offered for both of us to stay with him for as long as necessary, while my mom's sister told her that she was unable to loan her the money for a lawyer - even as she started talking about how they were going to remodel their house, so that stung more than a little bit. My brother, on the other hand, seems as clueless as usual: "I do not know what to do with that information" was his response. SMH - never change, Big/Only Brother.  But, aside from the kids, who don't need to know until it's actually starting to happen, I think most everybody knows, so some of the uncomfortable 'who knows/who doesn't' tension is at least drained from our (already preternaturally tense) conversations.

So those are two of my mind's trending topics. Others include: Sister who reads my blog, I love you, please call me;  What the hell do you mean it's already February this week;Oh My God, Gmail: Don't eat my e-mails and Seriously: I'm probably going to have to get rid of a lot of things if we're moving.

 Super fun!

What's on your mind, this gloomy Tuesday?

Hi

What's going on? 

I'm hiding. (oops, sorry bout that)

 Reading.

Writing (but obviously not here).

Tumblr-ing (There's a story for another post.  In the meantime: here).

Sorting through pictures from 1978.

Avoiding making eye contact with actual real life people, especially the ones who live in my house.

Trot, trotting to doctors hither and yon, as usual. (Another set of stories, another set of posts.  In the meantime: New meds: Yay! New diagnoses: boo! Old diagnosis suddenly rearing their heads again: double boo!)

Missing my little people as things are too chaotic both here and there for proper sleepovers, and apparently one of the things I failed to teach them was how to return a phone call. (I hate the phone, so yeah: I probably dropped the ball there.)



Weeding out all the spam comments that keep getting through Blogger's spam catchers (seriously - like 5 every single day: it's annoying. Stop spamming me, "i read your peice and it seems relevant to my work on PLEASEBUYTHIS THING.COM".)

Getting up to 3 hours of sleep on one of my new meds, which - let me tell you seems like nothing, but if you've been living on Actually No Sleep for Very Many Years, these 1/2 hour chunks of real sleep are like mini miracles at this point.  Of course, the sleep is still sucky - not deep or restorative or even all at once, but it's a baby step, and I'll take it. 

Memorizing poetry on a Penguin App. ("Shall I compare thee to a summer's day/thou art more lovely and more temperate/rough winds do shake the darling buds of May/and summer's lease hath all to short a date/sometime too hot the eye of heaven shines/and often is his gold complexion dimmed/ and every fair from fair sometime declines/by chance, or nature's changing course, untrimmed.  But thy eternal summer shall not fade/nor lose possession of that fair thou ow'st/ nor shall death brag thou wand'rest in his shade/ when in eternal lines to time thou grow'st/ So long as men can breathe or eyes can see/ so long lives this and this gives life to thee.) There's a lot of free time - and very little free wifi - in waiting rooms. 

Procrastinating writing, reading, reviewing, buying, talking, meeting, thinking, doing.

Feeling old, as my oldest nephew goes to prom (freaking prom!) and my little sister's baby bump becomes more pronounced (we're past halfway to a new nephew, people: this is big news).

Just feeling too damn much, and not knowing how to sort it all out.

So pretending that I have it all sorted out by ignoring it and doing all of the things above, and many more.

And that's where we're at, folks.  Twenty first of May, 2013 - Lil Girl's 7th Birthday - And I spent it being confused by doctors, amused by Tumblr & Twitter (I agree: GIF does not sound like a peanut butter, people!), annoyed by my dad, ignored by most everybody else, and trying to figure out how the hell I'm not as stuck as I feel.  BUT, on the plus side: I do get to wrestle with my pillows for the close to 3 hours of sleep soon, I memorized some Shakespeare in my spare time, and I actually posted a blog instead of just thinking I SHOULD post a blog and then not doing it for, oh 20 days or so.  So I've got that going for me.

It's gotta be all uphill from here, right?

(Oh, and if anybody wants to explain to me how I'm breaking Tumblr and not posting G(as in Give me a break)IFs correctly, that'd be super too.  I'm just adding it to the list for now, and reblogging instead of adding things, because the one time I tried, it didn't show up at all, and now I don't know how to fix it.  I feel like when I had to teach my uncle how to use Firefox, because he thought the only way he could get online was through AOL.  I am officially too old for the internets, bc I broke my Tumblr.  I will figure it out, though, eventually.  Preferably before Yahoo corrupts it and leaves its empty shell behind.) 

Hanging out with my Sasquatch

Can't think of a word to encompass how overwhelming my pain is today.  Basically, I need to be floating, touching nothing with even the tiniest inch of skin, and - since my levitation skills are nil - that's not going so great.  I'm loaded up with drugs, in the hope that I'll just drift off for a little while, laughing at the idea that chronic pain patients use meds to get high... I'm using mine to keep me from skinning myself or following through on jumping out the window, just to feel something other than how bad this hurts.  My skin is the wrong size, I can literally feel my blood pumping, as if it's bruising me just by rushing through my veins.  I hate that there isn't a word big enough to cover how much it hurts; to compare it to 'hurting' at all seems like telling you a flood is the same thing as a teardrop - hurting is the only thing I'm doing at this point: it's who I am.  Existing, just breathing my way through it.  And all because of the stupid steroids, which, thanks for saving my life and all, but maybe next time you could do it in a way that makes me want to survive?  How is it that a drug that helps people with some kinds of pain somehow cause my nerve endings to act as if they need to interpret every input at DANGER: EXPLOSION levels.  I hate how quickly I can go from 'a little bit sick' to 'every part of your body is consumed by pain and fire', and how there's not a damn thing to do about it except to wait for it to pass.  Gonna get back to that, the waiting.  Here's some other people, making me feel more human, since they're pissed off at their pain, too.

"I have no patience these days with the Nietzschean cliché, ‘That which does not kill us makes us stronger.’ I’ve found that the deepest pain holds no meaning. It is not purifying. It is not ennobling. It does not make you a better human being. It just is. All the worst pain does is reduce us to our most primal animal. We want it to stop. We want to survive. It short-circuits any sense of self, diminishes us to a bundle of biological reflexes." Dana Jennings, Pain Beyond Words

“Pain is the Sasquatch of science, never witnessed, only endlessly speculated on.” Marni Jackson, Pain: the 5th vital sign.
 

"When I get caught up in the web of feeling, tied up til I’m completely ensnared in those slender threads of pain—–that’s when I realize that I’m out of any human reach——-out of the reach of rescue, but not out of harms way. You can’t kiss stuff like this and make it better—–sure, you could kiss it but what difference would that make?  Kiss it and make it the same.  Come get me and make me okay. I’ll wait here while we figure out why I’m fated to take it on any and all of my chins, What am I missing that makes me unlike what they call solid citizens?  What caused me to be a liquid citizen like myself, with the talent to find the winning part of losing, the talent to take that searing feeling of failure and writing it out til it doesn’t win…….?"   Carrie Fisher

Yes, totally amazing: now give me my meds and shut the hell up.

What did I say I was going to talk about tonight? 

How about strep throat?  Was that it?  No: I didn't think so, and yet, there it is. 

I spent the whole week hoping that my throat was just raw because the music was So. Loud. at the wedding on Sunday (I am the old person you all hate - Why does the music have to be that LOUD???) so to talk to anybody, you were basically yelling.  All night long.  I just figured I'd strained my voice a little.

And that probably was some of it, but then when I went in for my shots on Wednesday and some man in the doctor's office coughed directly on me.  Like, right on my face.  And didn't even give me the courtesy of an "oops," let alone an "I'm sorry, I just gave you the plague, would you like a Kleenex?"

So when my throat was about a million times worse this morning, I gave in and called my primary care, who was, you guessed it! Out of the office for the day, but her on-call covering doc could see me at three, would that be okay?  Sure.  Whatever.  Fine.

They called three times between 10:00 this morning and noon to rearrange the appointment times, and I was ready to be like "Never mind: miraculously healed! Just stop calling and making me TALK - did I mention my throat hurts?!", but then they did stop calling, so I decided to suck it up and go.

Now, the only new symptom has been my throat - nothing else, no coughing or wheezing or sneezing or anything, so I just assumed the covering doc would look at the red rawness, stick one of those sticks down my throat, and write me a prescription for the strep throat antibiotic I obviously need.

Isn't it hilarious how I'm still optimistic (and stupid) after all these years of dealing with doctors?

No it was: Let's talk about why you're in the wheelchair (because it might somehow be relevant?), and What do you mean it hurts when I press on your neck and lymph nodes (they hurt all by themselves, lady: don't touch!) and Are you sure you had bronchitis a few weeks ago? (Well, maybe I had a brontosaurus a few weeks ago, but I'm pretty sure it was bronchitis.)  Literally, let's just retake your whole history, for a strep test.  And then?  Still not give you any antibiotics.

No, after hearing that I'd had bronchitis a couple of weeks ago, and three or four sinus infections this year, the on-call doc decided that I might just have another sinus infection, and gave me Flonase.  Which... doesn't treat sinus infections.  (Or, at the very least, doesn't treat MY sinus infections.)  Told me to gargle with salt water (which I've been doing, and I hate, and blech).  Or it could be allergies, although allergy season is mostly over....and I'm on no less than three allergy meds. Whatever.  Definitely helpful, thanks!

 And then she preceded to talk for fifteen minutes about how interesting POTS is and how she's never seen anybody with that, and isn't it amazing how many ways the body has to adapt to things?

Um... no? 

My body is MALadaptive, lady.  It is adapting poorly, not "amazingly."  And I don't care if you see patients like me every single day, or once every 3000 years, could you just stop chattering on and on and actually treat what I'm here for, so I can go home and be sick in my own damn bed?

It was frustrating, to say the least, and the thing that makes it worse is that if I had called yesterday, instead of waiting to see if it'd go away (like a dope), I could've called Zack's office, and the nurse there would've just sent my antibiotic rx right through... I kind of having a standing order.  But they're out of the office today, so I figured the primary care was my next best shot.

Turns out my next best shot would've been attending medical school myself, so I could write out the damn prescription and stick my own little swab down my throat.  Next time. 

  

Halfway through November

and I hit 25,000+ words.  I'm going to talk about it tomorrow, I hope but I'm still trying to recuperate from various things here, and focus on not whining a lot, like I kind of want to.  (Shots.  Which were fine, but now are acting like I was bitten by some exotic animal all of the sudden. Anyways.)  So, instead of listening to me whine, may I suggest, you take yourself of to a television set and settle in for some Parks & Recs awesomeness tonight?  Special Guest star, Leslie Knope's #1 crush, Joe Biden.  :)  It should be spectacular. 

Fail

My latest drug trial was a big huge fail after one day on it, I had a killer migraine.  The second day, the migraine was better, but I still had a headache and now I had that pins and needles feeling in my arms and legs as if I'd fallen asleep on all four of my limbs at the same time.  But I didn't call Zach until the third day, as pre-arranged, because, if you've started enough drugs, you know sometimes, there's a hump you have to get over.  With the Lyrica, it was like living in Wonderland for the first few weeks.  Some of the other drugs have made me nauseous, others made me super tired (on top of my already exhausted state), one made my sense of taste disappear for a week, a couple of others have done really strange things: I'm almost never surprised.

Except, when I called Zack, he was surprised that I'd kept taking it.  "Why didn't you call me sooner - you don't have to put up with that?"  Um... obviously I do, what world is he living in?  "But it's good that you did, because that tells us something relevant"  To Zack, everything is relevant, even if he can't figure out how yet.  "Mmhmm."

So he called me back after consulting with a neurologist and this is what they come up with: the migraine and pins and needles (some sort of thesia) as a result of that specific drug show that my migraines in and of themselves could be playing a larger role in my whole pain syndrome issue than we've been assuming.  So, new treatment plan: botox for the migraines.  So he says to me, over the phone at like 5:30 on Friday afternoon.

Um, what?  You want me to get Botox for my migraines, which suck, granted, but ... we've figured have been pretty much under control, right?  Wrong.  "Maybe the tension in your neck and your jaw and your nausea are more migraine centered than we've been thinking, and this would help with that." Hmm... that's actually kind of sensible.

"At the very least, it will help with the migraines, give you fewer of those, and that'll be helpful."

Now, I'm starting to get behind this plan.

I have to do a little bit more research first - since a)needles in my b)face sounds c)horrible to me - but I could get behind this, even though I'm pretty sure it'd do nothing for most of my pain.  The fact is my headaches have been pretty deadly lately, so I'll take all the help I can get with them.  But this is just another example of how what you think you're dealing with when it comes to chronic illness is NO WHERE NEAR where you wind up.   

Got a lot accomplished today

but I'm exhausted now. (Shocker!)  Today was the kind of day when I spent so long making lunch that I was too tired to eat it by the time it was ready.  So, I ate it for dinner.  Eventually.  And it wasn't any special, elaborate lunch either - just roasted vegetables - but between the chopping and peeling (not to mention getting everything else off the only area I can use can reach for chopping and peeling), I nearly had to lay down on the floor in the kitchen once I got them in the oven.   Plus?  Squash skin are like impossible to slice into - I felt like I needed a hatchet.  Or a hammer.

 It was obviously a low energy day, and a high energy activity.  (Probably not for other people, but definitely for me.) 

Aside from that, I did some cleaning in my room, got the floor in the library picked up since we'll be having company this weekend as a cousin is getting married on Sunday, and wrote more than 2000 words for NaNo today. 

So, if I could nap, it would definitely be time for that.  Instead, I'm going to watch Jeopardy! and hope that there are some good categories.  Night all!

Blueberry Pie & Twizzlers aren't much of a housewarming present, but it's all I"ve got

My sister and brother-in-law are moving out today, and I am not ok with that.  We've lived apart before and would have to again eventually, at some point anyways, so it's not that so much as how and when it's happening that is so heartbreaking.  It is, in all actuality, going to turn out to be a positive thing for her, for them: it's a thousand percent in their favor that they would move out of some place that is unhealthy & stressful for them, especially at time where they need things to be as stress free as possible.  I'm three thousand percent behind them, and will continue to try to find ways to make things as stress-free as I can, even if it means hounding my B-I-L for updates bc I know my sister doesn't like to be pestered (He doesn't mind). 

The problem is that I just can't seem to get past the fact that it's so stressful and unhealthy for them (and me) for No. Damn. Reason. Except that people feel like being assholes.  Well, one person in particular, really.  Who is so busy playing the victim in his own mind that he can't seem to grasp the fact that hurting other people is the reason no one wants to talk to him.  Because he's "being nice now."  Like any of us trust that.

----------- 

I have avoided talking to the two sisters who grew up with our parents but don't live here, mostly because, since they don't live here, I usually have to hear about a thousand excuses from them about how his behavior isn't really that bad and I should have some compassion for him.  And it's not even that I don't have compassion for him: it's that he's trampled it all, as well as pretty much every other feeling I have for him, consistently over a long period of time. 

The sisters who don't live here seem to forget a) how much they both hated living here when they did - so much so that one left for 'vacation' full well knowing she wasn't coming back but kept it a secret till she was there so she wouldn't have to tell him in person, and the other moved out as soon as she could manage it.  Three times;  and b) exactly how he behaves when you are in his life on a regular basis.  I suppose if you only have to see him at birthdays, barbecues and/or holidays, or listen to him complain that you never call him anymore once every 5 months or so, then he'd be a lot easier to take.  I don't doubt that that is true; I hope it proves true - for his sake as much as mine and SisterJ's.

 It's my opinion that he just can't give up feeling like he's supposed to be the boss, even though we're grown adults (not to mention that he wasn't really the boss in our family, he just thought he was because he was stricter).  And since he can't be the boss in the way that he thinks he should be - i.e. being able to dictate your 'attitude' or demand the respect he thinks he is 'owed' - he tries to bully people instead. 

And, for a long time, we've let him. 

That isn't to say one or the other of us - or a group of us - haven't stood up for ourselves at different points, or demanded changes in our relationships... it's just that when you stop being vigilant about your boundaries, certain people (maybe all people? I don't really know) will notice that you're no longer guarding things that 'do not cross' lines as closely as you once were and will begin to inch their way back over again. 

And I can't keep letting that happen.

So we've got to figure out a different way to interact with each other, and two things will need to happen (from my perspective) before I could even attempt that.  First, he'd have to take real responsibility for his actions - meaning he has to stop thinking it's ok, just because he's stressed out at work, or with other people, to take that out on somebody and start to make changes in his own behavior.  And second, I'd have to figure out how to let go of some of my own anger and figure out how change my behavior so that he can't cross those boundaries anymore: to just accept the fact that he doesn't have to be happy about it, I'm going to do what I need to do regardless. (This is more difficult than you'd imagine when you live in his house.  And are financially dependent upon him.)  

And since I can't make him do the things I think he needs to do, I'm focusing on that second part there.  I'm definitely not on-board with forgiving, just yet.  Don't know when I could possibly get on-board with that.  But trying to figure out how I can live away from here, how I can turn myself into one of the sisters who just sees him every couple of months and deals with that in a more healthy manner?  That's what I'm trying to work on right now.

And I know, eventually, it'll be what SisterJ works herself around to, too.  She's too big-hearted (even though she'd like to say she's heartless) to not want to figure it out: that's why she's so hurt right now, because she didn't do anything to screw it up in the first place, but it still blew up in her face.  So, yeah, I know her leaving is a good thing. 

A necessary thing. 

And, like I said, in the long run, I have no doubt they'll be much happier there... it's just I don't want to be so far away from her when I know she needs me, and it's not as easy for me as it is for other people to just 'pop' in on her at her new place.  (Obstacles, oh how I hate your ever living guts.  Chronic Illness-related Obstacles: goes double for you.) 

But it sucks donkey balls, and I can't help being pissed off at him for it.  He's just going to have to get over that.

Having a bedtime

I know we've talked about my CFS-related insomnia before, but it's tearing off little pieces of my life right now, so I'm going to talk about it again.  Feel free to move along: probably the only thing worse than listening to someone tell you random half-stories about their dreams is listening to someone ranting about how they're not sleeping.  Which is exactly what I'm going to do right now.

For the past few months, I'd thought my insomnia might be improving.  It was tiny steps like closing my eyes and not opening them again every 36 seconds, or fading out during a show and realizing that I'd missed more than one set of commercials that made me start to think "holy shit: I was actually asleep there for a few minutes!", and led me to hope that maybe, just maybe, this cycle of painsomnia was letting up.  I did all the things you're supposed to do to create an 'optimal sleeping environment' (as my sleep specialist likes to call it): gave myself a strict bedtime (midnight: anything earlier than that was too depressing, and made nights seem endless) at which point I shut off all electrical appliances - TV and lights off, computer shut, etc - opened the window a little bit (because your room should be slightly chilly to help you sleep), and increased the number of hot showers I was taking (because there's something about hot showers and your body gradually cooling itself that is supposed to be helpful with sleeping).  All the little tricks I knew that helped me, I put into effect - Initiate Operation SLEEP NOW PLEASE!!

And the thing is, maybe that all seems like common sense to you, but to somebody like me, it's also kind of scary.  Sleep is kind of scary.  Because there was a time (I was going to say 'not too long ago,' but then I counted back and it's close to ten years, so I guess that was a while ago) where sleeping was all I could do.  Sleep was as involuntary then as not sleeping is now and it consumed my whole life.  I had to schedule my classes  around when I could nap; I slept through people's birthday parties and graduations, my own prom and more than one family activity.  I would wake up exhausted (so, basically no difference there), even though I had slept for 8 hours, 10 hours, 14, or 17 hours.  My whole life was sleep based (again, no difference, just now it's based on the fact that sleep won't come), and there was nothing I could do without first balancing it out with hours of sleep in my mental ledger: 2 hours of class, then an hour nap.  1 day of student teaching, a 1/2 hour nap at lunch and then a four hour nap back at the dorms.  Best friend's getting married, stay up till 1:00 (even though everybody else went out afterwards and stayed up till 7), sleep for a day and a half until your mother wakes you up, worried that you've not eaten in 36 hours.

That's how all encompassing sleep was for me, before the switch flipped and insomnia took its place.  So while I long for sleep - long for it with the "I will sell you my immortal soul" type of desperation only other insomniacs can truly appreciate - I'm still pretty afraid that my body will flip the switch in the other direction, and I'll once again transform into some sort of Rip Van Winkle-tte.  So taking steps to improve my sleep is one of those double edged swords you're always hearing about - you know, the only kind that's really useful, but you take a large chance that you'll get stabbed by it in the process.

Unfortunately. those few good signs have all but dried up again, and my commitment to creating a sleep Utopia flew out the window right after them.  Even if I shut everything down at midnight, I've more than likely turned it all back on again by 1 - my patience for tossing and turning is at an all time low, and every wrinkle in the sheet seems mountainous and villainous, and I start debating whether or not I could create enough of a spark with my heating pad to set the whole damn thing on fire, or if the mattress will fit through my window, should I decide to pitch it out there.  Evil NTE comes out at night and dreams up ways to curse the entire sleeping world, or super-empathetic NTE takes over and spends all night watching documentaries about the saddest people who've ever existed in the universe.  (Side note - If I am Youtube surfing at night, no matter how seemingly innocent a search I have started off with, I will -without fail- somehow wind up on a clip that will make me bawl.  I started out watching old songs from Sesame Street (1-2-3-4-5-6-7-8-9-10-11-12 Ladybugs, at the ladybug picnic), and ended up watching Big Bird sing at Jim Henson's memorial service, at which point, my eyes were swollen shut, and I decided that was as close to sleep as I was going to get, and closed the computer.)

I saw someone use the term Painsomnia (on the Twitter, I think), and it was like "Hello word: I'm so glad someone has created you because you are exactly what I have been trying to say for ten years, but couldn't."  Painsomnia is exactly right, because if I wasn't all Princess & the Pea because of the stupid fibromyalgia, I might be able to get 15 consecutive minutes of sleep in, and I wouldn't be here, again, ranting about the fact that I didn't sleep last night.  I wouldn't be in complete zombie mode today, after 4 really tough nights, during which I saw every minute of the sunrise, and tried to translate the morning birdsong into English.  (I think the robin who lives in my neighbor's tree is very upset about the 2012 political scene.  Maybe.)  

But I'm re-initiating the bedtime tonight, because it feels like the thing to do.  Maybe it'll help, more likely I will spend 6.5 hours listening to a dead DJ being replayed on the fuzziest AM radio station my radio can reach (that's a story for another time), but at least I'll feel like I'm doing something.

Although, I can't promise I won't be back here all the earlier in the morning, complaining again.  

That's ok: I don't need to shower

So I just had my reevaluation for my participation in our state's Personal Care Assistant program - the program I use to pay my mom for doing things like buying groceries and helping me shower.  I've been in the program for about 6 years or so, and every time the people come out - and it's never the same people - they tell me something different. At my initial intake (done 3 agencies ago), the nurse and the case manager came together, sat with me and basically explained how I didn't qualify for 3/4 of the stuff I really need help with - like cooking and cleaning and whatnot - because I live at home, and "the other people you live with are expected to pick up those tasks."   That was news to both them and me, I assure you.  And considering that one of the stated goals of the program is to "help clients live as independent a life as possible", kind of contrary to what we were supposed to be accomplishing.  But they were right - six years later, I still am not technically approved for the majority of what my actual needs are: someone to dust when I'm not around (bc of the asthma); somebody to bring groceries into the house and maybe get them made into a meal once in a while; all the toting and lugging of me and my chair to various non-medical appointments, etc. 

We filled out the paper work, with our best case scenarios, and nobody was surprised when the decision came back from Mass Health approved for significantly less hours than were necessary.  Significantly less hours than a qualified nurse and my own doctor considered necessary, I might add.  But I took what I could get, because, especially at that point, any financial help was better than the nothing I was getting. The kicker, in regards to my hours, is that I was approved for 30 minutes of "medical related" travel time A WEEK. 

30 minutes of medical related travel time happens at least 3 times a week, and that doesn't even include the actual appointments.


At another evaluation, the nurse told me that I qualified for an additional stipend, because of a new part of the program, and that she would put in the paperwork for me.  She didn't, and by the time I found out that she hadn't, the state had suspended that program, and I could no longer apply.  Last year, the nurse told me I was approved for two years, and wouldn't need a new evaluation until 2013.  I've had two people come out since then, both for evaluations. 

Today's nurse went out of her way to tell me that Mass Health is dramatically cutting back on hours, to the point where she's had to tell clients that their hours were cut back because "risk of falls is anticipatory language, and Mass Health doesn't pay for what we might anticipate our problems to be, but what they actually are."  Gee, there's great budget reducing deduction, state agency --> cut preemptive funds to protect people from falling, client falls and is badly injured, now needs MORE services then ever (so you spend even more money than you would have originally)!  Ignoring the fact that the client is a real person, who will have additional pain and suffering because of the fall (and I'm only ignoring it because I know they are), what kind of logistical financial sense does that equation make??  True facts: I hated math in school, but I still managed to pass, so I know that it makes zero actual sense! 

Anyways, she gave me the spiel about cutbacks and then said "So I hope I don't have to make any changes in your eval, because the only clients that I've had them deny are ones that I've asked for adjustments on.  So I try not to rock the boat."  She said that before we had started going over what help I need and when I need it, she said it at the bottom of every page, and she said it again as I was signing my (blank) form, so what are the chances that I told her that I felt like I needed more hours?  Even though I really do need more hours, and need adjustments on the aspects of daily living portion that are still wrong from five years ago?

I don't think you even have had to pass math to guess, but the chances of that are also zero!

There's so much talk in the air lately about benefit scroungers & welfare layabouts - people who are scamming the system and cheating 'the tax payers' out of their hard earned money.  There's a lot of talk about cutbacks to essential social services and financial supportive programs.  You can't read any sort of reliable news source that isn't telling you about how the social safety net is being dismantled in Country A or Country B.

And if you read through any of the blogs from last week's brilliant Blogging Against Disabilism Day, then you probably saw how much these cutbacks are affecting the lives of very real people.  Here's just one more subtle example: I wasn't denied any services by the program I'm in, or by Mass Health, or even by the agency that administers my participation in the program.  But I was told, again and again, that to ask for the amount of help I truly need could leave me without the help I already have.  That to ask for more is to put it all at risk, and that was enough.  And it wasn't the nurse's fault - she was honestly trying to be helpful, because she knew I needed services and didn't want to see me without anything.  But when the climate is "our state is cutting money where ever it can find it, and if that means a person with disabilities falls (or goes without meals or showers) because of it, oh well: unintended byproduct of cost-cutting Necessary Measures!", then people with disabilities know that they have to be extra cautious, to settle for what they have, even when it's not good enough.

But no, those commenters who were sure that there "isn't STILL discrimination against the disabled": I'm sure you're right.  I'm just being overly sensitive. 

   

I'm sick of myself

I know I've been rather quiet of late, but I'm going through one of those periods of having SO MUCH to say, but none of it seems worth remarking upon.  I'm living too much in my own head, which is a constant failure of mine, you might note.  It's funny because I feel like I have so much to say, but perhaps I have already said it all, or someone else has - clearer, more convincingly, more precisely. I spend a lot of time reading things, marking things, copying things, pinning things, caught between thinking "Thank god, other people feel this way too!" and "See: Someone else has said it already, so keep your own ramblings to yourself." I am feeling both unworthy and completely worldly - as if I am learning new things every single minute of every single day, but they were things that everyone else has already known, and I am just the last to catch on.

 I am going through a period of change, that much is certain, and it's quite unnerving to look at yourself and not recognize the person you are becoming.  Some of the changes are positive, and purposeful and challenging - things I have been working so hard to address in myself, and am finally starting to see improvements in.  Others are things I had no real concept of - I didn't even begin to think they were lurking in the corners, waiting to greet me when I finally got around to them.  These are the most unwelcome, of course, the ones that spring up just when you think you've finally got something conquered... "But wait," it says, slithering out just as you're congratulating yourself on some great accomplishment, some true challenge that you have met with all your courage, "you've forgotten about me, and I am a much more formidable foe than the last fellow."  It seems there are no end of corners, no end of foes. 

And, again, at the same time, I find myself completely sick of how much I am thinking of myself - all of this questioning and second guessing, and erasing of mental tapes, and it begins to seem as if I do little else but sit and contemplate my own life, or read others accounts of how they contemplated their lives and strive to apply it to my own struggles.  Which, while a worthy goal, does not a good friend, sister, aunt, daughter, granddaughter make. 

So everyone else's worries pile in, or my worries about their worries, if I am being specific.  Or my worries that I am ignoring them, being selfish, not giving them the attention they deserve.  And somehow, in that muddle, I've come full circle again, and am thinking about my own faults and follies, instead of the people I was meant to be attending to. 

I don't know about you, but all this introspection is giving me a headache.  I'm going to do something for somebody else today: I don't care who, just so long as I'm not stuck in my own mental muddle for one more minute. 

In which I morph from Grumpy to Weepy, all in four short paragraphs!

For a large portion of the day, I felt so grumpy that I didn't think I should be allowed around other humans.  I almost typed "grumpy for no good reason", but then I thought about it, and it was more like "grumpy for a thousand good reasons, but none that I can do anything about right this second", which basically amounts to the exact same thing.  I came here, all prepared to write (yet another) endless rant about lord only knows what, but sometime in the last half hour, while sitting at the table with my family eating a very late dinner, the majority of those bad feelings shrunk down to manageable, and I think I'll save the rant for another day.  For tonight, I think I'll tell you how glad I am that I'm just sitting here, wandering around through the internet, while most of the people I love are accounted for. 

It seems, at least to me, that my life - and the lives of the people I am closest to - has become a series of blundering our way through one emergency to another, from one crisis to the next, ricocheting from one hectic gathering to the last, often leaving very little time for essentials of life, such as breathing or eating.  Every day has taken on an urgency that didn't used to be there, and at the same time, leaves me with such a useless, futile feeling: It's as if I'm running as hard as I can, and getting nowhere, not understanding that there's a treadmill beneath my feet as opposed to a street.

Moving all the time - at least mentally - and making no progress.  Even the areas where I can see progress being made, it feels like so little, too little to ultimately matter.  I am that prototypical lone sailor, trying to bail out my boat with a teaspoon, only some days, it seems more like a thimble.  So it's a rare treat when I can stop running for a little while, put down the teaspoon/thimble, and just be.
And even a half hour of just being.  Of just letting a good book take me far away, or sitting with my family at dinner listening to them bitch, or here, in the dark talking to you fine people, is invaluable.  (Literally had to just google invaluable to make sure it meant what I wanted it to mean.  It does: you guys are priceless, google says I say so.)   Back to the bailing, would appreciate larger spoons. 

"But when it comes to fiction, the writer's only responsibility is to look for the truth inside his own heart. It won't always be the reader's truth, or the critic's truth, but as long as it's the writer's truth - as long as he doesn't truckle, or hold out his or her hat to Fashion - all is well.

I have now written three drafts of a post I'm trying to get just right, and have been fighting with over the course of about a week, and every draft (while making minor improvements) seems so far from where I ultimately want to wind up, that it's discouraging.  Sometimes the words just don't want to come.  Sometimes too many of them come, but they're all the wrong ones, or they're wearing the wrong outfits, or they showed up to the party three days late.  It's a good reminder that writing is a craft, and that you have to work at it.  Of course, I'd rather that the words just showed up, appropriately attired, when and where I want them to, but that's not always the way it works.  So, tonight, because time is running out to actually get something up, you get this instead - a post (whose title is probably longer than the actual post) about how I'm having trouble writing the real post, and I get to go try to coax the words out of wearing sombreros and galoshes for a little while longer.  


*Stephen King, Full Dark, No Stars

Friday Night Lite

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

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

On the subject of families and traditions:

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

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

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

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

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

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

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

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

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

A little surprise archeology

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

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

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

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

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

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

Just in time

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

Game On.

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

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

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

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