I will not gloat...

but I will do a little happy dance in my head. And if you think it's because the Democrats are finally getting the chance to step up to the plate, you're wrong. It's not just that: It's the fact that there will now be No.More.Political.Commercials!!!!! Yay!

Also, as a little side-note here, it's a week past Halloween, Thanksgiving is still two weeks out, and I think that's a little frickin early for Christmas commercials. Seriously.
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In other news, I've got a doctor's appointment this afternoon, and I don't feel like going. But I will. I just wanted in on the record: don't feel like it, doing it anyways. Actually, it's that kind of a day for me, all over. Got the Media player of shuffle, but I keep hitting next. Too impatient or itchy or something to make it through a whole song. And I keep thinking "Why is this song on here?" Since this is my computer, I know I'm the one who put it there.

It's just my mood, I guess.

Also? I don't like it when doctor's appointments are late in the day... I feel like I'm wasting the whole day waiting for it to be time to go. (And then, because I know my doctor, I'll be wasting my time sitting in the waiting room.) 45 minutes, then we can go. I'm just all moody b/c ... because these appointments so often fall into one of two categories: The Time-Waster or The Hope-Raiser. And I can't decide, just now, which is worse.

The Time-Waster is kind of the placeholder appointment: I go in and say how things haven't changed, and how I need to try something different, b/c these meds are definitely not the magic bullet they had been suggested to be. And they take blood and the doc talks about all we've tried, all the tests we've run, all the stuff we're still waiting to get back. And the whole purpose of this appointment is to wait some more. To have him say he's sorry, but they still don't know what the f@(* they are doing. And I feel badly for him & the nurse, who are trying so hard. And I feel badly for me, who is also trying very hard, & for my family who have to deal with this shit.

The Hope-Raiser is an all together differnt type of appointment, yet with shockingly similar results. I go in and say all I have to say and the doc says "Wow, look at these results: They show a definite XY deficiency! If we fix that, you'll definitely see marked improvement!" And I get all excited, but try not to get too excited. And I leave with the new treatment (whatever it may be: weekly shots? Fine! Drink this disgusting stuff 3 times a day? Fine! Come in for weekly infusions? Fine! Add yet another pill to your repertoire? Fine!) & the hope that this is the thing that does it for me. And when it doesn't, I am sad for him, I am sad for my family, I am sad for me. And everytime a new hope doesn't work out, I find that I am less able to hope the next time.

Which is really all my mood is about today: it's a gray & rainy day, and my mind's in a gray & rainy place: after the Lyrica not working the way it should, after the biopsy being just one more question mark instead of the period it was supposed to be. So, don't wanna go, but I will. Because one of these times, they're going to turn out to be right.

Election Day Post

In honor of election day (Have you voted yet, internet peoples? If not, go do so immediately. I'll wait.), I'm sending you to a recent post by the Smart Bitches. It's a discussion of the perfect political canidate, and what qualities would be required of him/her.


The fact that the list wound up creating a need for "virginal vampier politicians" is not just laugh out loud funny, but somehow sadly true.

Now, how does one go about becoming a member of the undead community?

Ah, the joys of digital cameras...

I've downloaded a ton of pictures today. You think I'm kidding, but in the past week alone, I've added over 300, from various people's digital cameras. I'm stuck in bed recooperating from yesterday's outing: Youngest Sister turns 18 on Thursday, I'm sure she and her friends will go crazy then (she's talking tatoo...), but the party yesterday was pretty low key - immediate family (& the people they are with) only.

It was loud only because there was a 6-year-old and an 8-year-old around. Ok... also the grown-ups were pretty loud; playing with the baby, trying to talk over each other, you know, all the usual stuff. (Although we never got around to a game: I only lasted a few hours & had to pack up & come home.) The scrapbook was a HUGE hit (yay!), and we all had a reasonably good time (Except for Youngest Nephew's new attitude, but I am absolutely not talking about that today, as I will get upset again).

Anyways, back to the pictures.

Don't you want to see Little Girl & Youngest Nephew in their Halloween costumes?

I thought so.


Here's Youngest Nephew arresting his great-grandmother. Her crimes are multiple, I'm sure.




And Little Girl's punkin costume spent almost the entire night covered up by a bib. She's very drooly. (That's my Mum behind her.)



And here's the both of them, during one of those rare moments that you could actually see the costume.


And, lastly, Youngest Sister, counting her candles, making sure they're all there.

I still don't believe it either: how is it possible for my youngest sister to be turning 18? Who sped up time? Was it you???

Well, that didn't take long...

Days I have been NaBloPoMo- ing: 5

# of times I had to say to myself "Post something already!!!" today: a lot more than five

However, that's directly related to the number of MINUTES I slept last night: a lot less than five.
(Ahh, the irony of CFIDS-insomnia. Except irony is a stupid, stupid concept, people. S-T-U-P-I-D. Also, the wit of CFIDS-insomnia: Y'all are soo lucky to hear from me today, what with these high-quality witty remarks.)


Lucky you, I've prepared for just such an occasion --- I'm not new to this: the number of times I had to write (& then rewrite) a term paper at the beginning, (middle and end) of the semester, just in case of brain fog/hospitalization/any damn thing are too numerous to count --- So, I saved up some meme's to fill in.

Today's meme is short & sweet and I got it from Sadico Junction. I'm doing the answering today, though, even if I've been saving up the questions. So, I am, technically writing it today. I just figure there's less of a chance of me making no sense if I stick to specific things.

Here we go:

What is your favorite romantic movie?

This is hard: picking just one. I am not good at that. (Why did I think this would be easier, again?) Here's what I'll do for you, I'll keep it to two. My favorite oldie: An Affair to Remember and my favorite modern one: Love Actually. Love Actually was not a huge hit here, as it should have been, but it seems to be coming into it's own now: I often see it on people's favorite lists. As well it should be. It's a weird mishmash of stories, but they're all good. It's frickin funny, very sweet, and so different from most other movies. The other, An Affair to Remember gets all the credit it deserves (remember those scenes from Sleepless in Seattle?), but for me, it's all about Cary Grant. As the saying goes, I would listen to him read from the phonebook.

What are you currently looking forward to?
Wow, it's kind of sad that I couldn't readily think of anything. But I'm pretending that's the Fog. Today starts the crazy months for my family: Everybody but me, my niece and my nephews was born in the period from the first week of November to the first week of February. It goes like this Youngest Sister (18);Oldest Sister (30); Soon-to-be Sister-in-law (37); Only Brother (30); Mum (46); SisterM (21); Dad (58); SisterJ (24). Not to mention Thanksgiving & Christmas & all that hullabaloo. So, there's a lot to look forward too, a lot to budget time and energy for. Today, I'm most looking forward to seeing Youngest Sister open her birthday present: A scrapbook that I've been doing for months.

What are you scared of?
We've talked about this a bit before, but I'm scared of losing the people I love. I've lost some already, and the blows were hard to prevail against.

I'm also scared of not getting better, of being like this (or worse, dear God, the worse) forever.

What brings you joy?

My babies - Niece & Nephews. My crazy family. Books, books and more books. Wrapping presents. (Finishing presents!) Melted cheese & white chocolate (separately, my friends, separately).

And not breaking my 5-in-a-row-so-far streak! Especaillly since I'd rather have taken a nap. Oh... a nap. There's some joy right there!

SPH: Windows

Grab the Scavenger Hunt code. Photo Theme. Join the blogroll. Visit participants.

This week's Saturday Photo Hunt Theme is Windows. I could have done any number of things, considering my sister's room alone has 8 windows (it was converted from a porch, back before we were born). But I've always loved this picture, the silhoutte it makes. The picture's 6 years old now, as the baby in Youngest Sister's arms is none other than the now BigBrother, Youngest Nephew. Considering Youngest Sister turns 18 this week, and Youngest Nephew has lost the look of all but his last vestiges of little boy-ness, the sihoutte they'd make now would be dramatically different. But it's a picture that touches my heart just the same, because I can remember the gawky teenager that is now a beautiful young woman & her face when she held the round baby that has turned into a powerful young boy.

Hoagies...

I don't know if you've heard, but there's an award for amateur bloggers that's up and running over at Heather Anne's. (Are you reading Heather Anne's? Because I wasn't. And now I have to spend entire day's reading her archives.)

Anyways, Heather Anne has decided to host the Hoagie Awards. With trophies and everything!

So, I sent a couple of Nominees in (most of which are no surprise if you hang out here enough) ~


Hilarious-est Blog: The blog on my bloglines account that makes me laugh most consistently has got to be: Suburban Bliss Poor Pickle Boy!

Blogger who Should be President: For this, I go to my friendly "tribal elder," Maya's Granny over at
Maya's Granny.

Best Blog Written By a Heather (Sadly, I don't really know any) - edited to add: Now I do, but Heather Anne says you can't vote for her.

Cleverest Commenter: Chaos Theory, to be found at the entire blog is clever commenting! If only I had thought of that.


Friendliest Blog : I'm gonna go with Miss Zoot: and not just because she has free blogger templates, but because when I visit there, she makes me feel welcome.
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So, on Tuesday, go on over and vote for your favorites. I have an idea that it's really just going to add new must-reads to my bloglines, but sacrifices must be made.

(I also must see if there isn't a smilie around in the "poor-me-southern-belle-faint" pose. That's probably asking too much, right?)

Our First November Poetry Thursday (& NaBloPoMo Post #2)

and I've got a doozy for you today:

If
by Rudyard Kipling

If you can keep your head when all about you
Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired of waiting,
Or being lied about, don't deal in lies,
Or being hated, don't give way to hating,
And yet don't look too good, nor talk too wise:

If you can dream - and not make dreams your master;
If you can think - and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two impostors just the same;
If you can bear to hear the truth you've spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
And stoop and build 'em up with worn-out tools.

If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breathe a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: "Hold on!"

If you can talk with crowds and keep your virtue
Or walk with Kings - nor lose the common touch,
If neither foes nor loving friends can hurt you ,
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds' worth of distance run,
Yours is the Earth and everything that's in it,
And - which is more - you'll be a Man, my son!

---------------------------------

This is one of my absolute favorite poems. If is idealism to the extreme: it's like an idealist's checklist. "Follow these instructions," it says, "and your life will be right. Yours is the Earth and everything that's in it!" Doesn't that sound great? Everything is yours, if you can just do these things.

But here's the catch: all of these things are Very.Hard.To.Do.

There ain't an easy thing on this list. Which is why it's all just one big If.

When my high school English teacher first introduced my class to this poem, I wasn't really sure that I had 'gotten' it: it seemed to me that every single poem we'd learned in that class had a hidden meaning, and that my initial interpretation was entirely wrong (See: The road not taken). So I waited for the analysis of the poem that would tear apart my naive & illusioned response. But none came. It seeemd this poem was a poem that was exactly what it first seemed: a guide to living a grown-up & thoroughly good life.

10 years later, I'm still waiting for the chance to say that a lot of those lines apply to me. I can see all my worst weaknesses laid out there in that poem (If you can bear to hear the truth you've spoken/Twisted by knaves to make a trap for fools; If you can trust yourself when all men doubt you ), and wish that Kipling had given us more of a "how-to" & less of a just a list of requirements. But, there are some lines that I can claim, lines that I feel are my own, deep down, particularly this one: And so hold on when there is nothing in you/Except the Will which says to them: "Hold on!" Because, sometimes, that's really all there is.

October was a busy month for the blogosphere (as if there's a time when it isn't), so I had plenty of posts to choose from for this month's .

Here's a little roundup of what kept me busy, thinking, &/or laughing hysterically this past month:

Harley was being stalked by the movie Troy. For me, it's The Pelican Brief .

An intensely personal and moving call to action from Dirty Birdie, over at Dirty Laundry. And her colors are so pretty, too.


The Happiness Project, a recent addition to my addiction, had a terrific post about diffusing tantrums in kids; While Bonanza Jellybean posted about bad behaviors in adults.


Hidden Words and I both "celebrated" our Sickaversaries this month.


Molly Saves the Day had an unique perspective on the re-release of Disney's The Little Mermaid. And the Smart Bitches & their commenters gave their perspectives on reading romance novels at a young age. (Yeah, I started reading them early too: I was about 10. I wasn't exactly supposed to be reading them, but I read anything. During those first couple of years, I read one of my Top Ten favorite books, It (along with anything else by Stephen King). I also I also read parts of the encyclopedia, every book of the bible, and any other reading material in my house (Trust me, Cosmo makes no sense at all to an 11-yr-old.)


I couldn't stop laughing at Slate's assessment of that big faker, Harry Potter.
And Mama Pop quickly became a snarky must read after their post on the Gilmore Girls (even if they're a bit harsh on Aaron Sorkin.)

---
But my Perfect Post award goes to Balls & Walnuts, because I heartily second the notion that Boys Need Romance! Here's part of what he had to say:

"The best romances I have read answer questions which would bewilder the typical boy. Or man, for that matter. Foremost among these questions: What do women want? What do they need? What do they love about us? What do we do that drives them nuts?

Yes, IÂ’m making sweeping generalizations, but you know itÂ’s true. Guys, be they 13 or 33, donÂ’t know the answers to these questions. ThatÂ’s not the bad part, though. The bad part is, they donÂ’t even know they should be asking these questions."



Congrats to Balls & Walnuts!

I'm juicin

Creative juicing, that is.

I'm amping up for NaBloPoMo.

A whole month of posts! All in a row!

Are we ready, people?

Are we excited?

Are we going to kick Blogger's ass, if it refuses to post pictures for us, like it's doing today?

Are we possibly going to throw up, trying to come up with a post for every.single.day?

If you answered yes to one or more of the questions, then check back tomorrow (and the day after that, and the day after that...) to see what's going on here at NTE.

SPH: Safe

Grab the Scavenger Hunt code. Photo Theme. Join the blogroll. Visit participants.

Today's Saturday Photo Hunt theme is Safe...which is ironic.
Because after this post by the lovely Amalah, I'm feeling anything but about posting personal pictures.




So, here's who'll be guarding our house this week, keeping us safe...










Off to see who's keeping y'all safe this week...

Hello, all!

Well, my eye is recovering well, thank you for your concern &/or mockery. ;)

In other news, I'm going to have to figure out an escape plan. I am incredibly over-sensitive to smells, which in turn irritates both my asthma and the CFIDS, and yesterday the city decided to start repaving our street.

Um... Are you aware of just how badly tar smells, people?

Yeah. It's not good. So I'm trying to come up with an evacuation plan that seems plausible. They'll be back next week, which means I gotta get outta here. The only question is where to go:

Option #1 is up the street to visit with my grandmother. And, by 'visit,' I mean invade and take over her entire house for probably at least a week. The pluses to this plan are that there are people who live there (my grandmother, uncle, and youngest sister) who will help me (with eating and little things); that it's a short distance and Mum can come and go as she needs to without worrying that if I fall I would be stuck there until she came back; I'll be able to read, or watch TV or, pretty much whatever I would do here during the day; & they have Wi-Fi, so my pledge to post everyday in November will have a fighting chance at being true. The negatives (aside from the health setback that follows an evacuation, which I'm going to have no matter what option I take) include the fact that my grandmother isn't exactly well, and I (& Mum & Baby Girl) would be imposing (even if they said we aren't); that I'd be bunking on a couch/pull out bed; that there are three steps and a short walk into/out of her house, which I don't know if I am up for.

Option #2 is to bunk at my brother & soon-to-be-sister-in-law's empty condo, also down the street. It is also close, but has an elevator: no steps. It also has no TV or wifi or, really, anything other than an empty Refrigerator and a futon. Because they have moved their family back in with her mother, and nobody has bought the condo from them yet. I would still be close, but I would also be very alone, when Mum has to do what she has to do. (Which, hello, I am not going to focus on the very sad fact that, while I would love to be alone, I just am not physically up for it right now.)

I don't know if there's an option 3, really. I suppose I could go to a hotel, but how would that be different from the empty condo (except for that it would cost me $?) I could call my college-roommate/best friend, who would ... without a question... open her door to me, but she has a family & a job (not to mention a dog), and she lives... about an hour away. IDK, I can't think of other options right now. In the past, I've always chosen option #1, but I really don't know about those steps... hmm. Will be pondering this, I promise you.

ANY ways... before I wandered into my own little obsession, I was going to say that this:
is TOTALLY UNNECESSARY. Your cat does not need painted toenails. EVER.

Yesterday, I got deodorant in my eye

I kid you not.

File under: things that only happen to me.

So, I've explained before about my whole shower=coma thing... Showering takes so much energy, combined with the intense heat that my muscles require leaves me drained and zonked for a couple of hours.

So, yesterday, after my shower/coma, I started to get dressed again. This takes effort and energy, and I'm still running low on both. I have all the lotion and deodorant and clothes all set out beforehand, for easy assembling. I also have not put my glasses back on yet, because they are over.... there. And I am ... not.

I roll over, grab the deodorant. It's a gel kind, because the glands under my arms are often swollen and sensitive, and with this kind, I don't actually have to use much pressure. Usually, this is a very good thing. But yesterday, not so much.

Because I can't get the stupid cover off. And trying wears me out all over again, so by the time I finally do get the cover off, I have to lie down again.

Which I do. Then I click the little "give-me-more" clicky thing at the bottom, and deodorant comes flying out of the little hole and lands directly in my eyeball.

Holy Lord, the sting!

And, as it is stinging, I am not sure if I should scream or cry or laugh: I have DEODORANT in my EYEBALL! What the heck kind of crap is that?

So, I'm grabbing my eye and telling myself to blinkblinkblinkblinkblinkblink, because I know, from working with young children who love to get things in their eyeballs, that this is what you are supposed to do... Your eye's natural instinct is to rid itself of anything that doesn't belong there, hence tears will rush to wash it away. But telling a four-year-old with paint splashed in their eye to blink and making yourself blink while it feels like your eyeball may be on fire are two entirely different things.

I grab my bottle of water and use the little cap as an eye wash, letting the water drip all over the place, because I am still too damn tired to get up, but I have a stinging fire in my eye, so screw the sheets. My brain kicked in just enough to use the other eye to try and read the warnings on the back of the deodorant to see what they say about getting it in your eye.

Surprise, surprise, but there is no such eye warning on deodorant. Because even though the American public is too stupid not to know better than using a toaster in the bathtub, they are apparently smart enough to not get deodorant in their eyes.

Because this kind of shit only happens to me.

Today, my eye is raw looking and red. The kind of bloodshot that makes you not want to look at people ("Peanut, why won't you play with Auntie???") It's still a bit tender, but thankfully lacks the film that was freaking me out last night.

As I write this, all I can think are these two things: a) why am I telling the blogospher what a freak I am? & b)if somebody ever googles this entry, I am not sure if I would be afraid or glad.

So, blogosphere, what kind of crazy is happening in your world?

Since I am totally over feeling sorry for myself, let me just hit you with a couple of things that I think you should see.


First, I know everybody and their mother is already reading dooce, but seriously?
This entry? Way.Too.Funny.:

Normally I like to leave spaghetti noodles very long so that I can twirl them around my fork like people do in the movies. But lately I’ve been trying to make everything as appealing to Leta as possible, so this weekend I broke the entire box of noodles in half. That way she had at least a fighting chance of getting an entire noodle into her mouth without realizing just how slimy and oogly a cooked piece of pasta can be. It didn’t work, it never does, and instead of eating a single bite she spent the entire meal wiping pasta sauce off each noodle. With a wet wipe. Until every noodle in her bowl was clean. As if preparing her personal space for the triumphant return of the Lord.

Because I can totally see Leta sitting there, wiping off each noodle till it sparkles.

-----
Miss Zoot has a bit in her post about my new 'favoritest' show: Studio 60 on the Sunset Strip. People? Why are you not watching this show??? It is excellent: soaked in Sorkin-y goodness. Fast, witty dialogue; characters who care; sly, intelligent humor. If they cancel this show, I will be very upset with you all.

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And Gina had a line that pretty much sums up how I feel about the people upstairs:

And really, if you are going to spend your whole life wishing you were somewhere else, do the rest of us a favor and go already.

Now if only I could find a way to get them to do it...

Happy Tuesday all...

Sick-a-versary

This post is for me: it's all the wallowing I am allowing myself for this, my 12-year Sick-a-versary. This year, I’ve decided that the only wallowing I can allow is in writing.

So I’ve gone back over all the stuff I’ve written, or read, about being sick over the past 12 years. It’s a lot of stuff, I’ll tell you. Mounds. So, in “honor” of my 12th sickaversary, I’m going to give you some snippets, little glimpses into my life, and what it’s been like during this long, hard, battle. Mostly so people won’t be worried about me, I’ll warn you that these aren’t always easy to read (even for me), and that I don’t necessarily still feel the same way about certain things as I did when I wrote them. But they were how I was feeling at that particular moment in time, and some of these things I haven’t even shared with those closest to me. (Gotta love the anonymity of the blogosphere for spilling-your-guts purposes.)
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Today is my 12th sick-aversary

It is 12 years, exactly, since I was well.

On the 20th of October, 1994, I was decorating the homecoming float with my friends, then I taught my dance class (5 yr-olds) and got them ready for a halloween party.

On the 21st, I was so sick that, when I fell out of bed, I could neither call for help or get up on my own. I couldn't even roll over.

Over the course of 12 years, I have had a lot to say on this subject, and so have many others. So here it is:

“I can’t express my pain in a way that seems reasonable. If I say it is screaming, that doesn’t seem loud enough. If I say it is nagging, that doesn’t seem overwhelming enough. If I say it is constant, that makes it seem as if I could get used to it (and, sadly, at some point you do). Ache isn’t a big enough word; pain isn’t easily definable. I can’t explain the depth of this pain: how it swallows everything else. Everything I know about myself, everything I know about the world, and everything I think to be true. It becomes all I know, all I can feel, all I can ever remember feeling.” October 2004

“People talk about their chronic pain as if ratting on the other partner in an unhappy, toxic marriage. They fall out with their pain, they have screaming fights with it, they make up again. Or they try to run away with some attractive little analgesic. But pain has their cell-phone number and won’t let them escape. Living with chronic pain can be a grinding form of intimacy.” (Marni Jackson, Pain: the 5th Vital Sign, 2002, p 95)



“My body has become this traitor, this thing I can’t even recognize. I hate it… and it is me… what does that say? How does a person live in a body that they don’t understand and hate so much?” 10-3-04

“My tests were all negative; nothing could explain my illness except chronic fatigue syndrome. I called my parents. “I have good news and I have bad news,” I said. “And it’s the same news.” (Anne Ursu: You’ve Never been tired like this: Glamour Magazine, June 2005)


“I have had people – close to me and close enough – tell me that I am lazy, weak, depressed, not trying. I have been told more than once to “just start moving” or to “just keep it up till I feel better.” On my worst emotional days, I feel the guilt of being unable to do so, the fear that I am not really trying, the shame that I just keep failing.” 1/14/05

“There’s so much suffering, and so much of it is emotional and mental. You feel incredible guilt, you feel like you are the only one who has this. It’s the opposite of hysteria, which is supposedly caused by all the openness, all the media attention that makes everybody believe they have these things. This is the opposite, where you believe you came up with this on your own, you invented it. These drugs should be working, so you’re unresponsive. The alternative medicine should be working, so you’re not thinking positively enough or working hard enough.” (Paula Kamen, Head Case, salon.com, 10/05)


“I have thought about dying more than once – in a nonchalant sort of way that is terrifying. “If that bus hits me, I won’t really mind. At least it wouldn’t be this.” At my worst, my most painful, I prayed that a bus would drive through my room: jump the curb, onto the sidewalk, through the yard, crash straight through the wall into my bed. No one else is hurt, and I am hurt no more.” Sept 27, 2004

“It was the easy way out. No more trying to keep pace with others. No more pretending everything is ok. No more mind over matter. No more irrational fears. Better yet, no more rational ones. … After thinking through all my options for the past few weeks, I had come to the conclusion that I would not take the easy way out. … Dying sound fine, just for a little while at least, to get some relief – but suicide was too drastic. After all, the desire for self-destruction and the desire of wanting pain to end can be two different things.” (Paula Kamen, All in My Head; p257-260)



“In my fervor to not make my illness the center of everyone’s lives, it has erased it from them completely. Oh, they know that I am sore. They know that I am tired. But they don’t know what it is like to be me… what every day is like. What every failure is like. What every minute of waiting does to a person. Oh, every now and then they will ask, they will say “so, what’s new?” But really, all they want to know is that I am still trying, that I haven’t given up. That they won’t have to deal with me, like this, forever. They ask only because they are supposed to: and this is partly my fault, for having no progress to report is both daunting and discouraging and there are only so many times you want to give the same bad news.” February 2006

“I know what it is to be ill in the bosom of your family… Unless you want to behave like an abominable egotist, you have to avoid giving expression to your pain so as not to upset those around you. ….Our pain is always new to us, but becomes quite familiar to those around us. It soon wears out its welcome, even for those who love us the most. Compassion loses its edge.” (P76, Daudet, In the Land of Pain)

“Anybody who’s ever really been sick knows that the tolerance level for illness is low. Once the get-well roses begin to wilt, everything changes. Compassion and caretaking turn into burdens and vulnerability becomes weakness.” (Writing the Wrongs of Identity, Meri Nana-Ama Danquah; p176)


“I’m sick of reading about dying, injured, paralyzed, horribly ill people and hearing “And s/he never complained. Not once.” Or “she died with a smile on her face.” What kind of crap is this? What kind of people are these people?
How can anyone (Not just a sick person, but any person), live a life and not complain?

Are there actually people who never feel tired, or sad, or just plain, done? I don’t know those people. And I don’t think I want to know them. And I damn sure ain’t one of them.
Being me is HARD: Living is HARD. Living with a chronic illness that no one understands, no one cares enough about to research; no one wonders what it’s like to live like this, to be like this, to have all this pain all the time, this brain that doesn’t function, this body that argues with you over every little thing. How do you never have a complaint?
Real life is messy. It’s painful and complicated and confusing and frustrating and scary (and joyous and wonderful and sometimes almost perfect) and to keep all of that inside of you would only make it more so.
If I couldn’t write.
If Mom didn’t listen to me vent.
If Shannon wasn’t still an ear I can pour my soul directly into.
If all of these outlets were missing, I would be missing. I can promise you that.
If I had tried to make it through the past 10 years without complaining, all alone with my worries and concerns and upsets, then I wouldn’t have made it.
And there should be no need to keep it all to myself.
People who are sick shouldn’t feel compelled to think they’ve got to hide all their weak spots just because they’re sick.” 1/7/05

“Today, when alternative therapies are available in every mall in the country, the ill person is blamed not only for getting ill, but if the therapies fail, he is also blamed for not getting better (“he gave up too soon,” “he didn’t want to get well”).” (Susan Greehalgh, Under the Medical Gaze; 2001; p49)


“What kind of person wishes they were in a coma? Wakes up from a dream that they were in a coma and is actively disappointed? What does that say about where I am, who I am? I’ll tell you what I think: I think about how a coma, in the way TV or books portrays it, is a chance for your body to recuperate. A chance for your body to go back on its reserves and heal whatever is bothering it. To revive from something that you can’t deal with in any other way. So to dream about that chance – to sleep away all the time it’s taking for me to heal, all these false starts and relapses and horribly long periods of nothingness, of waiting. Well, that seems reasonable to me. Seems right. I wish that I could just sleep through it all, that one day, I’d just wake up, refreshed & feeling alive. Envying a coma… what kind of position is that to be in?” 1999

“The prisoner imagines freedom to be more wonderful than it is. The patient imagines good health to be a source of ineffable pleasure – which it isn’t. All that we lack is a sense of the divine.” (Daudet, In the land of Pain , p44)



“I am sick of playing guinea pig, but really, what other choices do I have? To ‘live’ like this forever? I don’t think so. But the more things I try that don’t work, the harder it is to believe that there is something out there that does… that will.”

“Until then, I’m tired. Exhausted. No reserves, no power left: plug me back in/charge my batteries tired. Not just physically, but mentally too. Tired of having to make do. Tired of waiting around. Tired of trying my hardest, putting all my effort into my every day and having no one see it. Tired of seeing the same four walls; hearing the same six songs; talking to the same five people. I’m tired of feeling sorry for myself. Tired of searching for answers that seem impossibly hidden, maybe even lost forever.” 8-15-04

“People who think dying is the worst thing, don’t know a thing about life.” Sue Kidd, Secret Life of Bees, p2)


“I just want it all to stop. I just want to be NORMAL. Just want to be able to live and feel and think about ordinary things. To not worry about tallying up today’s allotment of pain, or tomorrow’s allotment of pain pills. Or tallying today’s energy while worrying about the lack of stores left for tomorrow. It isn’t fair, and I hate it. I hate sitting here typing all this, feeling like the biggest whiner. Like someone who just can’t “get over it” already. But I’m not over it. I don’t know how to be over it. I don’t know how to get past this, if my body won’t let me.
I’m tired of having to decide. What’s right and what’s wrong. For myself, for my body. Which doctor to listen to, which ones to ignore. Which pills to try, which ones to stop taking. Which therapies are worth the time and effort and energy, and which ones aren’t. I just don’t know. And I don’t want to have to decide anymore.
I’m tired of having to suck it up. Of having to not cry. Of pretending that I am happy with my life the way it has turned out to be. Of not having the control I should have over my life. I’m tired of having to make nice to people just because I have no other place to go. I’m tired of biting my tongue about important things because I can’t make anybody mad, because I need them to help me. I’m just tired of it all. I’m so damn frustrated and angry and sick to death of the whole thing. It makes me want to cry. It makes me want to throw up. It makes me want to break something into a hundred tiny little pieces.” October 3, 2004

“When the shrink talked about how the disease would affect my personality, I talked about how my personality would affect the disease. I didn’t understand why nobody… I kept thinking, ‘I am me! I am still me!’” (Elizabeth Berg, We are all Welcome Here, p97, 2006)


------- & -------
That's it: The end of Wallow-Fest 2006.

We now return to our regularly scheduled programming.

Poetry Thursday

It's Thursday again, and I've decided that means poetry. Mostly because I've been reading it again, and I forgot just how good it can be. Just how much it can resonate with your soul.

So here's today's poem:

In Bed with a Book

Mona Van Duyn

In police procedurals they are dying all over town,
the life ripped out of them, by gun, bumper, knife,
hammer, dope, etcetera, and no clues at all.
All through the book the calls come in: body found
in bed, car, street, lake, park, garage, library,
and someone goes out to look and write it down.
Death begins life’s whole routine to-do
in these stories of our fellow citizens.

Nobody saw it happen, or everyone saw,
but can’t remember the car. What difference does it make
when the child will never fall in love, the girl will never
have a child, the man will never see a grandchild, the old maid
will never have another cup of hot cocoa at bedtime?
Like life, the dead are dead, their consciousness,
as dear to them as mine to me, snuffed out.
What has mind to do with this, when the earth is bereaved?

I lie, with my dear ones, holding a fictive umbrella,
While around us falls the real and acid rain.
The handle grows heavier and heavier in my hand.
Unlike life, tomorrow night under the bedlamp
by a quick link of thought someone will find out why,
and the policemen and their wives and I will feel better.
But all that’s toward the end of the book. Meantime, tonight,
without a clue I enter sleep’s little rehearsal.

-----------------------------------------------------

Again, for me, this poem boiled down to one line:
What difference does it make
when the child will never fall in love, the girl will never
have a child, the man will never see a grandchild, the old maid
will never have another cup of hot cocoa at bedtime?


Is there anything you can say to that? It is an ultimate truth.

So that's what I've got for you lucky people today, an ultimate truth, in poem form.

Enjoy.

Things I have to say today

• in random, bullet style:
  
  
  
  • Chicken Fingers should not be spicy.
  
  
  
  • Going to the dentist is scary, I don't care how old you are. (Even if the dentist is very sweet, probably younger than me & definitely better than last pervy guy dentist.)
  
  
  
  • Dear Channel 7 - Please stop with the alliteration. ("College Co-ed Caught and Kidnapped" and "Coffee Caper: a Horrific Holdup" is a bit much, don't you think??)



• Younger sisters need to stop traveling the world, buying new apartments, & going on blind dates (with pickle phobic strangers). I am feeling very left behind (except for the whole pickle thing). (And also, I should so stop beating up on myself for feeling totally jealous...ugh).



• Any commercial where people get hurt (Have you seen the new Corelle/model spot? LOL) will make my mother laugh. And I know it as soon as I see it... is there something wrong with us?



• I need to stop putting everything on the "when I get (even the tiniest bit) better" list. A lot of things I can't do until then, but I'm going to weed through it, find out what I can do now. There's gotta be some things...



• If the 1 against 100 questions don't get any harder, I might just sign up to play. Because I could probably get over all my "I hate being on cameras because I am fat and semi-broken" hang-ups if it meant I could win $1,00,000,000. Those questions are easy enough for my nephew (age 6). Are they going to get harder?




• I am too tired for family drama. Grown-ups need to stop acting like babies; sisters need to stop squabbling; everybody just needs to plain get in gear, here. I have spoken, so shall it be. (hahahahaha--- yeah right!)



• Must actually mail letters I have already written, instead of just letting them sit there on my desk.


I think that's it, but who really knows?

I'm off for double Jeopardy, which better be easy.

Saturday Photo Hunt: Lost

Grab the Scavenger Hunt code. Photo Theme. Join the blogroll. Visit participants.

Quick and cute for you today:

Here's BabyGirl, 4.5 months, searching diligently for the keys she lost



and... just so you won't worry all week about it, here's the found



Hope everybody has just that kind of luck all week long!

A poem for a Thursday

I'm totally frustrated with my family members right now (you know, the ones who say that we're going to be watching the baby and then never show up and never call???), so all my writing is rant rant ranty rant.

Instead of subjecting you all to that, I thought I'd post one of the poems I'm in love with from this amazing book.

(I'm pretty sure I can post it, so long as I include the author's name... the blogosphere is full of all these tricky situations, ain't it just?)


So, anyways, here's a poem for you, on this Thursday:


It Is Raining on the House of Anne Frank

by Linda Pastan

It is raining on the house
of Anne Frank
and on the tourists
herded together under the shadow
of their umbrellas,
on the perfectly silent
tourists who would rather be
somewhere else
but who wait here on stairs
so steep they must risee
to some occasion
high in the empty loft,
in the quaint toilet,
in the skeleton
of a kitchen
or on the map -
each of its arrows
a barb of wire -
with all the dates, the expulsions,
the forbidding shapes
of continents.
And across Masterdam it is raining
on the Van Gogh Museum
where we will hurry next
to see how someone else
could find the pure
center of light
within the dark circle
of his demons.

------------------------------

How amazing is that? For me, it was all about "on stairs /so steep they must rise/ to some occasion." It's a beautiful poem. Just amazing.

And the book , Good Poems for Hard Times by Garrison Keillor, is packed with little gems. I borrowed my copy from the library, got about 15 pages (and 8 sticky notes) into it before I put in a request for it over at Paperback Swap.

So, that's what's what for today. Will go read some more, refrain from writing nasty e-mails to careless loved-ones, and listen to the rain here in Massachusetts.

How was your day?

I have things to say about tonight's episode of Lost,
this discussion over at the Smart Bitches, and a whole bunch more. But for right now, let me just say:

Did anyone else see The Colbert Report tonight? With "George L."? Could it have been funnier? George trying to look sad when he didn't win, Stephen pretending not to laugh when he says "You really captured the look/feel of those movies?" or "How many times have you seen those movies? A couple?" (Those are not the exact quotes, I am sure...but still you get how funny they were.) Tonight's Colbert Report (which will be replayed 3x tomorrow on Comedy Central, so you can catch it if you missed it) was AWESOME. I bow to his highness.

:)

Just random.

Today, I wanted to buy a lottery ticket, but never left the house in order to do so. I have this very weird ability to pick the daily numbers three minutes or so before the numbers are called. :shrug: I don't get it, and it doesn't work at any other time ~ say, like when you might actually be able to BUY a ticket & win some money ~ but it's still interesting.

Today, I reread a Nora Roberts (one of my favorite authors) book for probably the sixth time. It isn't even my favorite of her books, which shows you how many times I have read her books. I got the newest, the second book in the Circle Trilogy (awesome: about magic and power, love and war; has vampires and vampire slayers, time travelers, witches, sorcerers and goddesses. Pick it up now!), on Monday, and it took me less than 2 hours to read the whole thing. Now I am upset that I have to wait a couple weeks for the finale.


Today, I ate all sorts of things I shouldn't have eaten. It was one of those things that you know is stupid, even as you are doing it. I don't really know why I do things sometimes. There was something about having the house all to myself for two days that made it seem like the thing to do. It's a little bit crazy, and I know that, but I still did it anyways.

Now I am off to watch the mindmaze that is Lost. Who knows what the heck will happen then.

Do you know how hard it is to come up with a good title?

Pretty dang hard.

This whole "long weekend thing" is screwing with my schedule: when you're home all the time, the days of the week are only recognizable by the schedules of the others in your home (and the shows on tv). My sister didn't go to work today; BabyGirl didn't show up. Wait...isn't it Monday??? I know I watched Brothers & Sisters last night, so it should be Monday.

Don't let them fool you: it is Monday. It's Monday in disguise.

Anyways, I got all my papers organized this weekend.
(I should keep a tally of how long that actually lasts: 2 days and counting.)

I lost an entire day yesterday trying to make a photobook on Shutterfly.
(Seriously, I am so anal about things like that... it would have been fine if I could just let things be!!)

On the plus side, I saw X-Men 3, which was very, very good. I was impressed, because I think all three of the movies have been utterly entertaining.
(My favorite shot was the one where Juggernaut threw Wolverine through the ceiling of one room and he came down through the ceiling in another... spectacular.)

Today, I'm hoping to get some scrapbooking done: I've done 3 out of 5 of my siblings, but these last two are the hardest, because their moms are not my mom, so I don't have as much stuff to add. They are very picture heavy.
(And need to be finished in a month... so I better pick up the pace.)

Also, I'm trying not to obsess about BigBrother, Sister-in-law, Punkin and Peanut (Youngest Nephew, only Niece) moving back down to where her parents live. It's about 45 minutes away, so Punkin had to switch schools. But BigBrother and Sister-in-law will still be working up here, so we'll still be watching Peanut during the day. Basically, these two siblings will be being raised independently of one another, and I don't think it's a good idea. Also, with longer commutes, BigBrother and S-I-L will be getting home later, seeing less of both their kids. All around, I think it is a bad idea, but they've made their decision, and now all I can do is try to help them work it out in the best way possible.
(See, this is why people need to listen to me: the number of things I could say "I told you so" about in this situation are M_A_N_Y; but I resist. Except for here... here I can tell you that they are wrong, and not thinking clearly, and rushing rushing rushing into a very important decision without thinking through the consequences again!!!)

It's a beautiful fall day outside, but my house is about 15-12 degrees cooler. So I'm cold, and everybody who walks by says "Oh, but it's soo nice outside!" This means nothing to me, because I am inside, and here, it is cold.
(You might as well say, "Oh, but in Kentucky, it's sooo nice!" I am not in Kentucky, therefore it doesn't matter to me.)

That's about all the two-sided conversations I am up to having with myself this morning... I'll try and come up with something interesting for the next time we talk.

Have a great (faux) Monday, everybody!

Return to the hunt...

Grab the Scavenger Hunt code. Photo Theme. Join the blogroll. Visit participants.

I'm back! And just in time for a theme I can really get on board with: Sleeping.

Sleeping pictures (according to my Picasa 2) are the second most popular theme of pictures in my house. (#1 being All Dressed Up, which includes over 60 pictures of people in hats...Which is just... Strange.) I had upwards of 125 pictures to choose from (some of which I'm saving for the future dreaming theme I saw on the list).

Here's what I wound up with:

First off, a two-fer: SisterCh and my dad, Christmas morning 1987. This was back when she was still cute and snuggly, and actually liked us. (Today, not so much.)


Then there's my BigBrother (also 1987) and his boy, Punkin (earlier this year).
How awesome is it that my 6-year-old nephew is less of a geek than his 11 year old father was? SisterJ saw that picture of Punkin and said he was "pimpin!"; his father, on the other hand, is definitely not.

























And I'll finish up with my mom's absolute favorite picture of me, sound asleep in busy Logan Airport, July 1979. She says that I slept through most of the very long flight to California, while my brother (then 3 1/2) got airsick almost before the plane was in the air. It's a really good shot, though... and just precious.



So, that's what I've got for you today: I'm off to make the rounds right now (hooray!), and am glad to be back & up for playing.

Photo Hunt Lists

Photo Hunt Theme List

Photo Hunt Blogroll

A meme kind of day

Courtesy of Diner Girl


TEN Random Things You May Not Know About Me:
1. My bookshelf is organized by author, genre and color (in that order).
2. I eat Snickers bars by taking a bite, then sucking all the chocolate off, then sucking on the caramel and peanuts.
3. I can move my pinky toe independently of the rest of my toes.
4. I hate mayonaise. And tunafish. And together? They are probably the most disgusting thing ever.
5. I believe in things a grown-up probaly shouldn't still believe in.
6. When there's a funeral at the church across the street, I sometimes cry just watching them all file in behind the casket.
7. When I was well, and a dancer, I could do splits easily and comfortably make my feet rest up behind my head.
8. I love to make lists, but don't always follow them.
9. My brother and I each have a chicken pox scar in the same exact place: over the arch of our left eyebrow.
10. I think poetry needs to be read aloud or else it's not interesting.

NINE Places I've Visited:
1. Kissimee, Florida (Where I saw it rain on one side of the street, with the sun shining on the other. Also where I saw my first rainbow.)
2. Point Sebago, Maine (I LOVED it... even though we were in a trailer)
3. NYC (In general, too loud for me, but I'd love to go and see a show, stay at the Plaza with Eloise, etc.)
4. Washington D.C. (History Day, 1993)
5. Wareham/Cape Cod, MA
6. North Conway, NH
7. Disney World
8. Newport, RI
9. San Diego, CA (although I was 2 months old, so I don't remember it)

EIGHT Ways to Win My Heart:
1. Love me for me: see past the broken down body enough to care about me as a person.
2. Be understanding.
3. Don't have pets. I like animals, but am allergic.
4. Love & be able to interact well with kids. (Not that goofy, totally fake crap that so many grown-ups do: really enjoy their company.)
5. Allow me to have the remote control more often.
6. Understand that reading is not a waste of time, but rather a necessity.
7. Stick up for me.
8. Get that talking to my mom or sisters about you [i] is [/i] going to happen. Deal.



SEVEN Things I Want to Do Before I Die:
1. Get Better.
2. Get Better.
3. Get Better.
4. Get Better.
5. Get Better.
6. Get Better.
7. Get Better. (Yes, there are other things I'd like to do, but if I could only get one, that'd be it.)

SIX Things I'm Afraid Of:
1. Outliving the people I love.
2. Never getting better.
3. Never finding my place in the world.
4. Losing my debit card.
5. That feeling when you know something is wrong but you can't figure out what it is.
6. That things will go from bad to worse.

FIVE Things I Don't Like:
1. Not being able to be nicer to myself.
2. Insensitive, rude, or just plain careless people.
3. Smells.
4. People who think reading romance novels equals being dumb. (Hey, I've read Tolstoy... I just didn't enjoy him as much as I enjoy Nora Roberts!)
5. When the UPS guy doesn't ring the bell. He was HERE, he stuck his little sticky note on the door that said we weren't home. I was HERE, so I know he never rang the bell. Wouldn't it be just as easy to give me my package as to stick the note up?

FOUR Ways to Turn Me Off:
1. Wearing a scent - again with the allergies.
2. Being rude to service people, strangers, or (God Forbid) your family.
3. Acting like you're right even when you know you're not. Just admit it already.
4. Suggesting that "everybody gets fatigued," or telling me about some "MIRACLE cure" you read about on the internet: I know my disease backwards, forwards and inside out. I stay current on research, treatments, new developments. I have tried everything my doctors can think of...if there were a cure, I would know about it. Thanks for thinking of me, but really, don't you think I do everything I can to not be like this? Perhaps you adding more pressure - kindly or otherwise - really isn't the greatest idea.


THREE Things I Do Every Day:
1. Read
2. Take my meds
3. Talk to someone I love

TWO Things that Make Me Happy:
1. My niece and nephews
2. Books

ONE Thing On My Mind Right Now:
1. I really need to get this site all spiffy. I need to get a new template, write and edit a new blogroll (as the old one still hasn't shown up completely), figure out what the heck blogger beta is. I don't know when I'll get any of this done, but it's on my mind.

(ETA: I do not know why my blog is yelling at you: I haven't screwed with the template at ALL. But I must.... hopefully, till I do, you can get past the shouting and read without getting a headache.)



Although I missed a bit of the month, there were still a ton of standouts up for this month's Perfect Post award (Via Lucinda and MommaK).


The runners up included:


Paper Napkin and her son, for an amusing game.


Dooce for making me rethink the definition of a picky eater.

And
Drunkbunny's
slightly older (ok, a year older & totally not eligble except that I just found it) post about Gay Marriage. That made me laugh, big time.



But I've decided to award September's Perfect Post to

WALL PAPER OF MY MIND, who's a recent addition to my blogs-I-must-read category. There's examples of why I like her so muchhere and here, but it was this post that I think is just perfect.
Because it reflects so much of what I feel is really, really good about the blogging community.

She writes:


"I came to love the comments on blogs. I am still realizing with each new blog I stumble-link to, in such a staggering ocean breadth of authors, that so many of them thrive on the feedback and the interaction it produces. Community is trans-morphing at a rapid pace for mothers. I not only read, but have met and become friends with the women I admire on-line. It has no precedent. "


I'm not, technically, a mommyblogger. Because I don't have any kids of my own. But I guess I am an Auntie Blogger, since the two beautiful souls that I am helping to raise are often fodder for my blog. And I love the amount of information and support and caring and fun that mommybloggers contribute to this strange new world we're all building here. So, I agree that it's something for them to be proud of, to claim.

So, WallPaper, you get to claim this prize, for standing up for Mommy Bloggers.

See, I've changed moods already.

I told you it wouldn't last long.

Just found out The Bitch Upstairs (tm) has ripped up the carpet on the stairs to the third floor, and has decided to paint and the recarpet.

Yes, you heard me right: Paint. And then recarpet. I know absolutely nothing about recarpeting, whether or not they use, say glue or something like that that would have an odor and/or fumes.

But Paint? Yeah, I'm pretty damn sure that has some fumes. And odors. And neither of those things are things my body is capable of handling.

It's not as if this is new information, either. The Bitch Upstairs (tm), you might remember, figured it was worth almost killing me to repaint the porch because her daughter needed it to look nice for her graduation party. In addition to paint, her arsenal includes the dreaded Mothballs & so-called Air Freshners. All told, in the past three years or so, I've been forced to leave my house about 5 times, sometimes for longer than a week because of something she has added to our environment without thought or care as to how it affects my body.

Not that I'm surprised. Because, she is, afterall, a Bitch.

And my grandmother? This grandmother? Yeah. She's all "well, I TOLD her not to." No. You don't TELL her, because we know from experience that she doesn't give a shit about what you say: You yell and scream and walk off in a huff, & then she does it anyways and I wind up in the ER or my other grandmother's couch again.
You say "Listen Bitch: This is my house. These are my steps and that is my granddaughter. You make one move toward any form of paint, and you'll find your bags out on the street."

The End.

I guess, sometimes, it's just too much to expect people (you know, your family???) to stand up for you.

So, who knows what tomorrow will bring? Maybe I'll be posting from the Hilton?

Hello Peoples!

Well, I missed the SPH again this week, but I did manage to take a shower.... It's all give and take, people, give and take. And I decided that finally beng clean was worth a little bit more of my energy and effort than searching for a "Comfy" picture.



(Also? I couldn't find anything that was "comfy" but not "sleeping." And sleeping is coming up in a few weeks, so I'll just save them for that. I do plan to try to do a little touring, though, so hopefully, I'll be visiting a lot of you.)

Anyway, here's something that I realized in my two weeks away:

I can do without e-mail, blogging, etc. But I don't want to.


I like that I have a place where I can write whatever pops into my little head.


And that there are people out there who are interested enough, or bored enough, or who care enough to read whatever little thought pops into my head.

Also?
That there are people that I care enough about that not checking in with them for over a week feels wrong. I need to know what's on sale over at Want Not that I didn't even know I wanted. I need to cry over Noah's birthday, because Amalah was the first blog I got addicted to and I can't believe that I've been watching (e-stalking) their family for over a year already. I need to hear that people have been living their own lives, and doing their own things, and still care enough about me to check in every once in a while.

In short, even though I wish I knew more about html, and that I had more time and energy to comment and update, I'm so glad that there's space in the blogosphere for a partial broken, sometimes nonsensical chica like me.

So, thanks for having me. (And you can be pretty sure that I won't be stuck in mushy-post mood for too much longer.)

Dear Internet Peoples -

Thanks for sticking around.

I am feeling much improved, as far as the biopsy goes. In fact, if I had waited another day or so to post, I might have thought I'd imagined the whole "intense-pain" of the first few days. The Fibro-Flare is on it's way down too, thank goodness. So things are looking up.

I had all these posts planned for the past two weeks:

- My one year blog-aversary (how to spell that??) and a brand new blog design
- A post on banned books week ---> Which, hello? Books should not be banned. The End. I have read some H.O.R.R.I.F.I.C. books, books with no plots, or too many characters. Books with disgusting and lurid details about things that I wish I didn't know. Books I wish I could erase from my brain. And yet, if someone else wants to read them (why, oh why?) they should be able to.
- An update on my crazy family

and, as is always the case, I had about 62 different topics pop into my head while I was recuperating. Do I remember most of them? Of course not. But a few of them managed to stick with me, so they'll be up soon too.



I hope to be back, full force, this week. And can't thank you all enough for caring, for checking in, for coming back.

For Enquiring Minds

*Thanks for enquiring*

The biopsy itself went wonderfully: sugar-cube-o-muscle removed quickly, easily and with no complications. The incision is about 3 inches long, and I have a bruise the size of a dessert plate on my leg (I bruise beautifully, BTW: I always manage not to discriminate against any color in the rainbow.)


The after effects of the biopsy are not as easily managed, however. I have severely underestimated the amount of work my right upper thigh does on any given day (Hello sitting. And turning. And also bending. Or stretching). And now that it is unusable, my left leg is not happy to pick up the slack. Also, the constant shifting that my regular pain levels require only amps up the whole "muscle with a piece missing" pain. Enter the dreaded FIBRO FLARE. It is dreaded and deadly. The pain pills are having a hard time deciding where they should go, and mostly decide to float around aimlessly for their entire worklife.

So, my brain and body aren't exactly working at any specific capacity...Unless there is a specific capacity labeled "Holy Shit this hurts and why did I let my doctor talk me into doing this."

But I'll be back when I can, and (given the fact that my family, as a whole, has been ... less than supportive) I can't say how much it means to me that you all are thinking about me out there.

So thanks, mind Enquirers. :)

Where's House when you need him?

Here are some words that I don't think the doctor should say to me, just nonchalantly.

Biopsy and Surgery.

Yeah... Don't just sneak those in on me, when I am not looking. And certainly don't add the word "Friday" in, just for fun. Particularly in this context:" Yeah, I think we'll just see if we can squeeze the muscle biopsy in on Friday, if the surgeon can fit you in."


UM.... WHAAAAAAAAt?

So, instead of the muscle zapping test that I thought I was going in for this week? (and really didn't want, but was at least semi-prepared for...)


A nice muscle biopsy.


Because the tremors (that I didn't. even. know. I. had.) are noticeably worse.
(Seriously, don't your muscles twitch when someone is holding your feet and telling you to pull your toes up towards you? I never really noticed it before, but it didn't seem odd till they told me it wasn't supposed to happen.) And the docs think it might help them to see a piece of my muscle up close.

I bet it's really pretty. But I think it's probably pretty happy where it is.

To be honest, this is not supposed to be the biggest deal. Probably won't need anything more than a local (I'll find out tomorrow), and they'll take about an inch or two square out. It should heal fine & quickly, a few days of pain, and that should be that. Except... the last time I had surgery it screwed me over big time, for a long time. (But that was a pretty major surgery and this is a pretty minor one, so I'm trying not to freak out.)

But really? I'd rather not.

9-11 Tribute Post

I'm participating in 2996, a tribute to the individuals whose lives were lost on September 11, 2001. I'm not going to turn this into a political rant, or even my own personal memories: It's a post dedicated entirely to one person: Nestor Julio Chevalier.




Nestor, age 30 when he died, worked verifying trades at Cantor Fitzgerald in the World Trade Center. Here's what little information I was able to find out about him:



"Nestor was the type of person who was a friend to everyone. He always had a smile on his face and you could not be in a bad mood around him. I enjoyed talking to him and hanging out after work. We both worked downtown in Brooklyn. He was so dedicted to his parents and his brother, not typical of a guy in his 20's. "(From 9-11 Heroes)

And on a different tribute page he was described in this way:

"Allow me to say that truly, he was the most nicest, friendliest and classiest guy you could ever meet.

The thing that I most remember about Nestor is his easy going personality. He had a great sense of humor and a wonderful style for clothing. I pray every night to Nestor and I ask him to give me the strength to get through every day.
September11victims.com


The New York Times did a piece on Nestor and his family shortly after the attacks, the title was "Inseperable Brothers."

Nestor Chevalier always let his kid brother, Maurice, tag along. Though the brothers were five years apart, they were inseparable growing up in Washington Heights. They worked out together at the gym, and danced to salsa at the nightclubs. They even moved out of their mother's house into an apartment of their own in the neighborhood. "We were the best of friends," Maurice said. "We did everything together."

Nestor Julio Chevalier, 30, verified trades at Cantor Fitzgerald and had planned to marry his girlfriend of nine years, Lillian Fermin, in October. He loved to tell stories about his life, often exaggerating the details for even bigger laughs. He found a rapt audience in his family and friends. Just last month, Maurice took Nestor to a salsa club to celebrate his big brother's birthday. Maurice danced all night.

"I miss him dearly," Maurice said.

Profile published in THE NEW YORK TIMES on September 25, 2001 NYT


It's the things that I couldn't find out about that I wish I could tell you all today. All those little things about him that his friends and family are still missing today, 5 years later. I've told you what I could find out about him, just by doing some searching, but it wasn't the whole of him.

He was a son,

a boyfriend,

a brother.

Think about your brother: the way he points his finger at you for an E.T. touch instead of giving you a hug. The time he got you into so much trouble by convincing you that dog bones were good for people too. The way he laughs, or looks at you with one eyebrow raised. All the little things. That's what Nestor's family is thinking about today.


And now, we are too.

As we should be.

To those who were touched by Nestor in life, I can only say I am sorry.

See, sometimes the brain knows what it is doing...

even when I don't.

So, because of last week's little oops... Here's this week's post all done.
Finding pictures of food around here is very easy. Pictures of us eating probably come in second only to pictures of us sleeping. So, I had lots to choose from, and here's what I've got for you



Take 2 babies covered in cake:











Add 2 boys stuffing food in their faces:







And top of with one girl who should be old enough to chew with her mouth closed:


And that's our Food-themed SPH.

Have a great week everybody

Day 1 of a new drug

And I've taken all my doses.

Right now? Do I feel better? Do all my muscles and nerve endings feel anywhere near normal?

No. No, they feel like MINE. And Mine SUCK


So, instead of feeling better, like I'm supposed to be right now, I feel depressed. Fuckin Depressed.

Because you set yourself up everysingletime that this is going to be THE DRUG .


Because you read al the research, everysingletime.
You read about the side effects and the dosage you should be taking,and when you should call your doctor, and you hope.

You go to the messageboards, and you say "Has anybody tried LNOM? How did it go for you?" and everysingletime, you hear the reports: the "Oh, it helped-me-so-much-I-don't-know-how-I-lived-without-it!!!!!!!!"s, the "Oh-My-God-don't-take-that-it's-like-poison!!!"s, the "this-was-my MIRACLE"s.


And, everysingletime, you say to yourself "don't get your hopes up too high, let's just wait and see."

but you do - get your hopes up -

everysingletime.

And, yes, it's only day one, and yes, you're supposed to wait till the stuff has enough time to kick in and flood your bloodstream with all it's pain-killing goodness. and yes, I know all this stuff.

But there's that part of you - everysingletime- that thinks as soon as you pop this pill, everything will change.

And, so far?

Every. Single. Time?

Not. So incredibly not.

So, it's not that I'm not giving up, it's that right now, after a day, I'm just sad. Sad and waiting. Waiting for all that goodness to start it's magic.

Any time now, wonder drug #217. Anytime.

Things I cannot get myself to care about today (even though I probably should).

1) The fact that I cannot get this Firefox extension to work, even though it is the sole reason I downloaded Firefox to begin with.

2) Street cleaning. Seriously, how many times does the street cleaner have to go by today: the answer is Every Single Time the Baby falls asleep. I'd rather have a dirty street.

Things I care a little bit about, but am trying not to obsess over:

1) The stupid EMG that is taking over 3 months to get around to is still up in the air. Now, instead of the actual test on Monday, like it's supposed to be, I'm having yet another "consult." Whatever. Just give me my new pain pills today, and I'll do whatever you want on Monday. Maybe.

2) The fact that this new med has some pretty serious potential side effects, not to mention the fact that I'm usually not the best with new meds to start with. But, I won't worry till I have to. It could be the drug : you never know.

Things I don't want to care about at all, but keep popping into my head:

1) Somebody is cooking something on their BBQ and it smells fabulous. On the other hand, I am having rice cakes with peanut butter for my 2:00 meal. There is no justice.


2) That picture of baby Suri... All that hair! We are a buncha bald babies over here, so Peanut still has the beginnings of little wispies and that is ALL. :sigh: But I love to rub her head anyways, so maybe the no hair is good.

And lastly, things I have to go do, right this very second.

1) get the crying baby out of her crib

2) shoot the street cleaner-man.

Here I am!

Two days in a row, even. Can you believe it?

Except very little happened today, and I wasn't sure what I could tell you about. But then, I took a shower. And, showering, by necessity has turned into someting intersting:


It is both torture and treat at the same time.


First, a little background about our bathroom. We live in a very old house: the bathroom door is not wide enough for the wheelchair, so I can't get in or out on my own. It's a small little room, so even if it fit through the doorway, there'd be no room for it to actually move. We have a claw foot tub, which, while beautiful, requires climbing in and out of. I cannot climb. I (obviously) can't stand, so I use a showerchair. Showering stopped being a solo effort for me about 10 years ago. And it is a challenge I am not always up for.


And the actual shower itself is like my own special form of kryptonite: with nerves that read even the slightest touch as PAIN, it's not my favorite thing. I can't handle cold water, at all, and my preferred water temperature is somewhere between "boiling hot" and "actual temperature of the sun." This searing heat zaps my brains right out of me (It's the POTS: my blood pressure is about 20/0 by the time I get out of the shower), and I can almost watch my ability to think or move flow right down the drain with the water. After my shower, my mom pours me into bed, where I have my "coma." At least 2 (and sometimes up to 10)hours of lying in bed, not moving, trying to get my body and brain to reboot.

However, the only time my body is semi-pain free is right after a blistering hot shower. If I hold the heat over the sorest muscles for a sufficent time, when I get out, all I can feel is a blissful numb tingling feeling.

Wow, with the poor descriptive word choice.

I wish I could explain it better, but it's really just that: the intense heat leaving my body, the chill in the air interacting with that heat, it's as if my body is suspended right above my normal oh-my-god-shoot-me-now level of pain, even for just those 3-4 minutes.

Of course, those three or four minutes are just a bit shadowed by the fact that I can't move, or connect two thoughts to each other.


But here I am a few hours later: brain working again, fresh and clean, talking to you nice people.

So, that was my day... what sort of intersting things happened in your life today?

I am tired,

but my brain is content to ramble tonite.

Punkin and Peanut finally went home about 3 minutes ago, hopefully with enough time for Punkin to get a bath in before his first day of school manana. (Cheers! And I'm pretty sure it's been a good long while since I've been on the Cheers! side of that equation.)


Another first? Punkin lost his first tooth yesterday, had his first visit from the toothfairy last night ("lost" may be a bit of an understatement: "Yanked out while biting on a pillow in the middle of a tantrum so that blood poured from his mouth" might actually be more accurate, but who's counting? Oh, and $5 for the first tooth? I suddenly feel older than ever, since I seem to remember teeth = coins, and that apparently makes me saddd).

But, House is new tonight (Yipppeeee!); the baby finally cheered up a bit at the end of the day (which probably had something to do with the poop that her daddy will have to clean up when she gets home : hahaha); and I am under 1400 calories for the day (so far, I still have to eat at 10:00 for pills, but I can do it!).

So that's my update. I need a nap, I've got House to watch and that is that!

A TOTALLY WRONG SPH

Grab the Scavenger Hunt code. Photo Theme. Join the blogroll. Visit participants.

Yeah... I was a week ahead of time (thanks, Karen!), so it'll have to wait till later. On the Road, huh? hmmm...

Be back with (the right) post later!

August perfect post

(Via Lucinda and Momma K)



My choice for August's perfect post comes from the lovely Miss Zoot, for her post, He stepped up to the plate....

The post itself is wonderful, all about falling into the trap of "being the one who does it all," (with the really great line "Of course, since I'm still the reigning Bitchiest Woman On The Planet (with a trophy), I'm having the hardest time thanking him. "It's something you should be doing anyway, no one thanks me when I wash dishes! Or feed the baby! Why should I thank you?" (Although that title certainly doesn't fit, Miss Z). Really, though, it's the post of the month because it so hit so close to home for me:

With the Punkin and the Peanut here during the week, there's a ton of additional stress on my body: I'm having to move so much more, having to make my brain focus,etc. and it is really wearing on me. But it doesn't have to be this hard.

Mum and I are watching them Together, so why don't I let her do more of the work? Why do I insist I am fine long after we both know I am not fine? Why do I insist on doing all the little things that could very easily be overlooked for now? Why haven't I learned yet, after almost 12 years of being sick, that I need to listen to my frickin body???




Having the Punkin and Peanut here has highlighted just how far away I am from being able to have my own family, right now.

(Of course, I knew this: it is not exactly a surprise, since I am semi-bed bound and have a hard time getting around enough to make meals for myself, but spending 8 hours a day with a 6-year-old and a 3-month old? Very much clinches it.) Because I am totally a "One Who Does it All" person, and have a hard time not taking over even when I am very very sick (cough: Exhibit A: NTE has pneumonia, and yet chases after then 1-year-old Punkin when he comes to the doctor's with me. Exhibit B: Punkin and Peanut are here from 9-almost 6, when I really should have said: "No, I don't think we can handle that much P&P time, I'm just not up for it.")

I've really had to put a lot of dreams aside, for now: I'm not working, I'm not dating, I'm barely doing more than changing the baby's diaper and playing another round of Monopoly Jr everyday, and there's things that I am missing out on, sure. But there's a reason those things are on hold: because when I am a mom, and a wife, I'll want to be able to give it my all. Like Miss Zoot does. And, I'm giving everything I've got to getting well, to being an Auntie, right now. So I can't, right now, be a Mum. It'll just have to wait.

So, go over there and check out Miss Z's post, and see if it doesn't make you think about your own parenting style.


Although Miss Zoot's post made me think about my own situation, Meghan over at
My Dog Harriet had me thinking about other people's situations. Her post on Post-Partum Depression, (Letting the Cat out of the Bag) and the comments that followed it? Amazing. Catch-your-breath amazing. The kind of stuff where you know the blogosphere is actually helping someone: Someone who is sitting there at their computer, thinking they're all alone, and then crying tears when they find out they're not. Kudos to her, her commenters, and all the moms out there who made it through.


Also in contention this month were:


Maya's Granny, a self professed "elder of the tribe," continues to share her wisdom with the rest of us. She had two posts that really got me thinking this month:I'm the Granny Nowlike Miss Zoot's post, had me thinking about what it means to be the mom, the aunt, the granny.
& the intriguing Sexualizing Children, where she talks about the choices our society has made regarding women and children and how they are dressed. The implications of those choices maybe something you haven't really considered before.

The Lipstick Chronicles had a good post, Savage Breast, about something I didn't understand the big deal about (It's a boob, people... you've seen 'em before, ain't ya?)

A new blog I added to my bloglines this month was Within the Woods. Adding to my Bloglines is a very selective process, people. I only have so much time available to check blogs, and I want them to be the best. Well, I think this post, Tv Dad , shows I made a wise decision.


Lady Strathconn gets a nod for her post I Should Have Been a Better Friend, because it moved me. When I got sick, a lot of my friends (high school sophomores like me, mostly) just disappeared. It hurt so badly and in so many ways I doubt I could explain. But the few that stuck by me? Are treasures beyond measure. And the ones I've found since? Who've only known the "sick-me"? Just as priceless.

And a last minute nod to Sheryl over at Paper Napkin, because she made me laugh out loud yesterday with this little bit:

"Yes, well, the reason I'm not sleeping is because the dog was on the bed, trembling. This can only mean one thing: Mount Vipoopius is about to erupt. I grab her by the collar, and run to the back door to try get her out in time, and she tries to squat and release before I get there. It's a little game we play, much like fetch, only with poop and expletives."

Sheryl, I'm not sleeping either, but it's not for a reason as funny as that. If that helps.

So, go check out some perfect posts, my friends: wander to your heart's desire!