And my alternatives would be....?

These are the kind of nights that you almost believe you made up , until they happen again.

Back when I actually talked to people (besides my family, who are just about the only people I talk to right now), eventually the conversation would turn to my illnesses and how I 'cope' with them. Some people would say things like "I don't know how you do it" or "I could never do it," which always seemed particularly wrong thinking to me because it missed the point that you don't get to pick whether you do it or not: These are the circumstances you have to live with... so get busy living. By whatever means you can.

So that's what you do. That's what I do. I just get through the days as best I can, using all the means at my disposal to try to make those days resemble - even ever so slightly - the life I want to have.

And sometimes I feel as if I am doing a pretty good job at managing things, that I have things as under control as they are likely to get, given the circumstances. That I am squeezing out bits of happiness where I can find them, avoiding unnecessary drama as much as possible, searching out moments of quiet and connection and the closest thing to peace that I can find in the chaos that is my life.

Tonight is not one of those nights.

Tonight is one of those "oh yes, your pain can get worse" nights. A night where I would've labeled my pain a 10+ on the pain scale, but I can still string words together in some semblance of sentences, so it must only be a 9+ instead. A night where I curse every medicine I take as phony, every pain management technique in my arsenal as a dud, every attempt at distraction as weaker than bringing water balloons to put out a forest fire.

And it's the steroids. I 'forgot' that steroids kick my ass. Actually I didn't forget, I just ... blocked it out, that things get this bad. Imagined that I was misremembering how bad things actually can get. I was hoping that this time they wouldn't, since I didn't have any choice but to take them. I only take them when things are desperate: when my tonsils touch and try to suffocate me, for example. In this case, because my infection went untreated for so long ("It's just fluid in your ear!"), the sinus/double ear infection raged inside my skull, causing havoc. Fearing a systemic infection and hospitalization (Zach knows me too well and was sure to explain just how serious this whole situation was, using words like "IV treatment" and "long term danger"), I conceded and agreed to take another course of the steroids.

They were a different kind then last time, a different schedule, a different dosage. And yet, the results were the same: just me and the pain, in the dark, each cursing the other.

I feel like my back has been trampled by horses, and even the slightest pressure - I am wearing a sheet, and it hurts me - is unbearable. From the crown of my head to lower than even the lowest low-rider jeans would sit, it is as if the skin has been peeled off and what's under has been flayed, as if my brain somehow turned all the pain receptors to 11 and let them do their thing.

I know if I could see my back (which, at this point would take some ingenuity), that it would look fine. Normal. Not as if wild mustang has bucked and kicked at it all night long. It will not have the deep blues and purples that you'd see after someone launches themselves down the stairs, or from an airplane, parachute-less: there's no bruises blooming to map out my pain... and yet it hurts more deeply and more completely than I could ever explain.

It's not just my back, that just happens to be my worst area, the section of my body where there's no safe patch, no less painful zone. My legs, for example, have 'tender' spots, but there are also places - the side of my calf, the top of my foot, my pinky toe - that aren't battered and busted. On my back, there is no quarter.

Pain can do remarkable things - it can make you roll over, make you shake, make you vomit, make you cry, even make you see the sun rise - and I work so hard at trying to tame it, trying to control it ... even just a little so that it doesn't control me, but on nights like this I feel as if there's no point - sometimes pain just wins.

And that makes me think about all the people who say how they could never do this, because I wonder why they think any of them would get a say in the matter.


I can't do this either. Except that I am. Except that I have to. Because there's no other choice.

For the sister who reads my blog

because she's sweet. And we play tag.


Here's some stuff I've been putting together for you for a while, from various places around the interwebs.


Credits: Wonderland tattoo, an ecard, Owls

"Always Remember" by DazeyChic, Pin-up librarian, Teapot, Dollhouse


Puff (from some random files I've scanned of old patterns, I think), Cuppy Cake , Fridge

LolCat, Jessica/Alice,


Ev-a, picture, "Everything Hurts" by TheBlackApple, Fun Times



Love you long time!

A little catching up...

Here is something people must forget about the whole concept of moving: once you are in the new place, you have to find a spot for all the things you've brought with you.

Or, if people don't, at least we did.

Right now, we are still living slightly bare bones - big furniture that the movers brought over (couches, beds, refrigerators), plus the personal care stuff you don't go anywhere without, some clothes, a couple of tables and bookcases and what not. But next week, we're getting our storage pods back, and now we have to figure out where the hell everything goes. Of course, I am "not supposed to worry about that", but since I am the only damn one who actually worries about things ahead of time, I have, of course, been worrying about that.

People who can get up and move things if the location of something doesn't suit them don't exactly think about what it means to not be able to do that. So that, if I have them set up my room (or the library, which I am still totally claiming as mostly mine) in one way and it doesn't work for me? Then I have to wait till everybody - or enough bodies, anyways - can make the time to come over here and help me again. And that is a party and a half.

So I've been skootching my bed (on wheels) from spot to spot, trying to decide where I get the least amount of sun glaring off the white house next door; trying to see how long the cords for my computer run, and how to make space for my printer; wondering where all of my crafty stuff is ever going to fit... all that kind of stuff. It's not high stress, but it takes a working brain, and some days I barely have that.

In other news, Harry Potter 7 is no longer playing at the only movie theater in our neck of the woods where I can watch movies, so I'll have to wait for Netflix for that one; my Wednesday appointment with Zach almost ended with me being hospitalized because of my know-nothing of a PCP, who told me that my intense ear pain was just some excess fluid in my ears - 3 weeks ago! - and was (shockingly) wrong. Instead I now have a double ear infection and a sinus infection and they've left me severely dehydrated and with quite the elevated numbers - Zach thinks it's probably not a good idea to see her anymore, which I knew way back last September, but Mass Health disagreed. Of course, now I've actually moved, so they can't give me crap about picking somebody closer, but still... grr I hate picking new doctors; And lastly, in happy news I haven't shared yet, my oldest sister -SisterS - is going to be a mama again (13 years after Oldest Nephew), and is due in the beginning of December: I am very excited, even if the little man will live too far away from us (They're up in Cow Hampshire, about 2 hours away). So, now I have to come up with a new name for Youngest Nephew, I guess... or something like that.

Anyways... that's what's happening in our little world, where it's been in the 90s all week (I got a blister on my arm after being outside with the kids - WITH SPF 85 on - for about 25 minutes. I was in the shade. Screw you, antibiotics and your "you may be more sensitive to the sun" warnings) and where the weather man is right this minute telling us about a tornado watch we are under until 9:00 and how Hurricane Bill might cause flooding this weekend.

Why did we decide to stay in Massachusetts again? Cuz it sure wasn't the weather. (Actually, I tend to like our weather, but this week has been ri-dic-u-lous.)

Oh, and I have a new banner: how do you like it?

Little update...

Thanks for the well wishes, guys: I really appreciate it.

It's been kind of crazy here this week, and I'm feeling more than a bit worn out today. So far the post-move flare has not been ferocious, amping things up only a notch or two as far as pain goes. Which, of course, is horrible. If your pain goes from an 8 to a 9, that's a big deal. But, I had so feared a 10+++++, that I think I'm dealing pretty well with what I've actually got.

I do have a comfy, cozy new bed to retreat to, which has been helpful. (I even wrote a post about it, and if I can get my crap together long enough today to take a picture, I'll post it.) I am slowly adjusting to the new smells and sounds, which has been difficult. As far as sound goes, it's mostly just a lot of "Holy crap - who slammed that door? Is that someone coming in the porch, or just the floor creaking? Why is the bathroom right next to my room?" and new street noises like fools who set off fire works after 10:00 at night. Not so big a deal, really.

But the smells, oh the smells. There's the "odorfree" paint, that STILL smells even though it's been three months. Yes, it is less than it would normally be, but don't try to tell me it's odorless... there's a smell. There's the ocean breeze that occassionally makes its way up the hill, my neighbor's insistance on using some sort of stain on his new steps, and then there's the mystery smell, that seems to come in only in my window. UGH. My current theory is that the previous owners buried a body in the side yard before they moved, and that is why there is a cup of vanilla extract sitting on my windowsill right this minute.

Smells, the front porch 'ramp' (that is steep enough to qualify for a mountain), and the bathroom (No sink? Toilet in front of the door? Haven't you people ever used a bathroom before??) have been my biggest challenges so far, but I am settling in, slowly and surely.

Mum and I have been working our way through this season of So You Think You Can Dance? - don't tell us who won - and adding grab bars & curtains in the bathroom. I've already figured out that the den gets the best breezes and the front porch gets the least amount of sun after 10 AM.

I know that some of our neighbors have children, some have dogs, and we all need a new sidewalk. I know that the library is only 1/2 accessible, and the half that is are the children's rooms. And that there's only one local pharmacy that's open 24 hours (and, of course, it's not mine).

I'm finding that the house is awfully quiet a lot of the time, and that, because it is so big, people can disappear. I am not used to being so far from everyone - in our old house, there were 7 rooms - all on one level, all close together. You could hear people talking in every other room, if you wanted to. Here, there are 7 rooms on my floor, and now there's this whole upstairs that I've only seen on video, a front porch and a back porch, with doors and steps I can't climb. There's a basement and a garage, and a yard I haven't checked out yet.

I'm both excited that there's so much left to explore and overwhelmed, because who knows when I'll get to it.

I'm trying to approach it as if I have all the time in the world - trying to change my attitude from this being 'the new house' into this being our 'forever' house. If we're here for the long haul - the foreseeable future, let's say - then I've got plenty of time and I can just be calm about it. Of course it's unsettling to be living out of a suitcase, or to be faced with piles of boxes that you have to sort through, but I'm really trying to enjoy the process here - and that does not come naturally to me. It's a real effort, because as much as I'd like to be DONE, I have to just take some deep breaths and try to let things unfold at a pace I can handle.

We'll all see how well I do.
As always, thanks for caring.

Yes.

Yes, I am finally in the new house.

and

Yes, I finally have internet (that I don't have to stick the computer outside the window to steal from the neighbors) again.

and

Yes, I am doing mostly ok, although there are still L.O.T.S. of issues.

and

Yes, I hope to be back blogging (with whole sentences, and - gasp! - perhaps even paragraphs) very soon.

because

Yes, I am missing writing, and reading, and visiting with all of you.

but, also

Yes, I am just too wiped out for that to be today.