PUS

I keep starting and getting stuck on a post about the People UpStairs, or PUS< as I like to call them. I can't make it more than a line or two without getting angry. And when I get angry about them, my brain seems to lose function. So, instead I'm going to try this --->

This is a letter I wrote to the PUS (technically, my maternal uncle, aunt and their 2 oldest children)- & got convinced by my family/chickened out of sending - about a year ago. It gives all the details except for this - tonight my grandmother asked me if I had an extra birthday card that I could give her, for Mr.PUS.

I am the font of extra cards... if your parakeet dies on a Thursday, I can mail you a "sorry about your dead bird" card by Friday. But I got her angry with me by refusing. By saying the only piece of paper I could give her to give to him would have the word EVICTION on it. (Although it could say "Happy EVICTION!" I'd be fine with that; or even "Happy Birthday, You're Evicted!!").
So, she's pissed at me again. But I know I did the right thing, because of this letter that I still regret not sending...

Mr. & Mrs. Pus -
This letter serves two purposes. The first is to present evidence on what I consider to be an increasingly dangerous situation. You do what you want with what I’ve said, because the second purpose is to tell you what I choose to do about it.
The things that I have included here aren’t the only issues that I am aware of, or the only things that I’m worried about. No, I have plenty of additional concerns that come to me through other people, through Nana herself, but what I’ve mentioned in this letter are only the things I know to be true. These are the things I can’t doubt, that I can’t say, “well, there’s another side or another way this could be taken,” because I heard them. Whether you believe them or not, it doesn’t really matter to me. I know they are true, and I know they can’t be allowed to continue.

The following are some examples of behaviors that I feel contribute to a stressful, and frighteningly dangerous living situation. These are things I have overheard, not because I have somehow snuck upstairs in an invisible cloak, but because they’ve been yelled, screamed, shouted at top volumes, for anyone to hear. I’ve been listening. I’ve been biting my own tongue because Nana assured me – all of us really – that she would make changes, that certain behaviors wouldn’t be allowed to continue. Not only have they been allowed to continue, they’ve escalated. So here’s what I know:
In the past few months, the range of names I have heard Nana herself been called – all to her face, mind you – are:
Bitch. Asshole. Dyke. Stupid. Useless. Friggin lunatic.


Names I’ve heard shouted - at Nana - about other members of this family include :

Crack whore, Junkie, Alchoholics, Sluts, Assholes, Bitches and Freaks.

I’ve heard Nana be told – on more than one occasion, and by more than one person - these things:

“Go Fuck Yourself!”

“Go Downstairs where you belong and leave us the fuck alone!”

“You have ruined my life, and I’ll ruin yours.”

“It’s none of your fucking business what I do!”

In response to Nana’s: “Shut your mouth! I won’t be spoken to like that!” a litany of fucks, one right after the other

“I don’t have to listen to you!”

In response to Nana’s shouting that this is her house: “I don’t give a shit whose house it is… Mind your fucking business!”

Threats I’ve heard made against Nana, or to Nana (against other people) include:

“If you keep spreading rumors about me, I’ll do it again.” (This was during a conversation that was about bleach and included the admission that “I only did it that once, when I was younger.”)

“I will stab him in the fucking face. Give me the phone. Tell that bitch that I will stab him in the fucking face if he goes near my father. You don’t think I will do it, but I will.”

“Those people downstairs so much as look at me and I’m going to punch them until they bleed. I won’t be able to stop myself.”

“You can’t stop me, bitch. I’d like to see you just try.”

“Nobody cares if this is your house. Now get the fuck out of my face or I’ll make you.”

We talked once, years ago, about why you stayed: your children were obviously unhappy, Nana was unhappy, and (even then) you felt you were being treated unfairly. You told me then that you had made a promise to your father – to take care of Nana. Looking back, not just at the things I’ve included here, but at everything else you know to be true, do you feel you’ve kept that promise?

By isolating Nana, ignoring her, threatening her?

By allowing a home to become a hostile, tension-filled environment?

By refusing to acknowledge where things have gone horrifically wrong?

In making this decision to go against Nana’s wishes, in making the decision to write this letter and in order to reassure myself that it was the right choice, I asked myself what I would do if the people upstairs were just neighbors, random people with no relationship to me at all.

What would I do if I heard another woman being threatened and screamed at in an increasingly vile way, on an increasingly frequent basis? It’s what I would have done if Nana hadn’t kept asking, pleading for the opportunity to make things better; to let us let her take care of it.

It’s what I should have been doing all along.

Of course, the only answer is I would have called someone; the cops, DCFS, whoever it is that handles these kinds of abuses. I can do no less for Nana then I would for a stranger, no matter what she wishes were otherwise.

And don’t think that I’m exaggerating my concerns because of whatever grudge you think the rest of the family is supposed to have against you.

Don’t underestimate what has happened so far…what continues to happen everyday.

Regardless of the names you give it, the reasoning you’ve built up behind it.

IT IS ABUSE.

Whatever wrongs you feel you have suffered, whatever injustices you perceive in how you all have been treated, those aren’t important to me. There can be NO justification for such behaviors. No justifications – not the age of the offender, or the attitude of the victim. There are NO excuses for this kind of behavior – not for those who said and did these things, and not for those who allowed them to occur and reoccur. And I am no longer willing to hide behind Nana’s excuses and allow it to continue.

The fear of ‘what’s next?’ is not something I am willing to live with. If no one else is able - or willing - to recognize the dangers in this situation, to see that things are getting progressively worse, then I will make it my responsibility. Because it already is my responsibility. Nana is my responsibility. And I am not living with what happens the next time someone’s temper gets out of control.
Be assured that the very next threat, the very next diatribe of cursing and screaming, and the police will be called. No threats, it’s just my choice. To finally do what I know is right.
I’ve kept quiet because Nana wanted me to. Because I hate to have to do something I know she disagrees with, but I can’t let that be why anymore. I’ve kept quiet because I didn’t want to make a bad situation worse, because I didn’t want to become yet another thing for people to yell about, because I was afraid of making things worse for her. I’m not sure how much worse things can actually get, and that’s horrible. But I know that I am doing what I can – the only thing I can think of - to make them better.

I doubt you can say the same.



In place of sending this letter, my family had (yet another) big meeting. As usual, it descended into name calling and screaming. Nana assured us all that an eviction notice would be forthcoming, but here we are: More than a year - and numerous more such encounters - later, and no notice.

Just this past Sunday, it happened again. I missed the yelling and screaming, but Nana came down crying and shaky, then said she was "getting them the hell out!" the very next day. It's Thursday, and they are still here.

So, she can be as pissed at me as she wants - Cuz I'm pretty pissed at her, come to think of it.

UroStream: Grand Rounds Vol. 3, No. 28

By the way, I'm included in this week's Grand Rounds! Grand Rounds is a collection of medical-based posts from all around the blogosphere. Check it out.

Tatoos - of a sort

Tracey over at Picture This, has a whole week of theme-photos planned. I'm hoping to play along, but I'm not counting my chickens, either.


(BTW: Update on the paving: it's raining. Raining = not tarring. Could work out for me, at least for this little while.)

So, here's My Best Shot for this Monday... it's SisterJ and Only Niece, looking out at the world (back a few days ago when it was nice out). Too cute...

Tatoos - of a sort
Originally uploaded by bbackprple.

Gearing up...

Remember when they tore up half of the street in front of my house? (Not the right or left kind of half, but the #'s 1-100 kind of half.) And I had to escape because of the smell?

Guess what they're doing this week?

The other half.

Hopefully, they'll do it backwards, leaving our end (where they stopped), for last. It's the least busy part of the street so that'd make sense. But they rarely make sense around here.

So, we shall see.

Some good news, some not so good

First off, a little bragging: Youngest Sister heard back from her schools of choice... All Acceptances! Harvard, Brown, NYU, Yale. Amazing!!! and... she got a FABULOUS, fabulous, FABULOUS financial aid package from Harvard. A year at Harvard will end up costing her less than she pays to go to her orchestra camp over the summer. Scholarships are our friends!


Buttons = bursting here!!

And you, know what? I have the less-good news, but I'm not going to spoil this post with it. We'll talk about it tomorrow.

Tonight, it's basking time: My sister got into Harvard. (And, since it won't spoil her moment here, I can reminisce a bit: 10 years ago, I got a big fancy package from that school as well. I didn't wind up going there, though: I wound up a few blocks over at a small liberal arts/totally education-focused school.)

My sister got into Brown. And NYU. And BU. And Harvard.

And that big holding-the-breath thing we've all been doing? Is soooo over!

Only Niece, 'Stuck' in my Chair 3-20-07

Only Niece, Stuck in my Chair 3-20-07
Originally uploaded by bbackprple.

and did she want to be "rescued"? No, she did NOT, thank you very much. It was FUN. Shows what I know.

That's my best shot, this long Monday. I'm off to check out some of yours.

#uck "Suck it up"

I spend a lot of my time reading: It's something I can do at almost any pain level, and oftentimes I rely on it to distract me. Since I read so much, and I tend to be opinionated (who? Me?), I also write book reviews for various websites. (They pay me in books, which is, as my mother said "as good as crack" to me, so we get along just fine.)

I find that I am having the hardest time getting past the second chapter of one particular book: I'm not going to name it just yet, because I desperately want the book to change course in the next few pages & improve. So far, though, it's a huge disappointment - yet another self-help book, a la The Secret - that claims that you get to choose the course of your life.

Which, I believe, is a giant load of crap.

"It proposes a simplistic personal solution to a problem that is not subject to self-control.”
P69 ,The Chronic Illness Experience: Embracing the Imperfect Life, Cheri Register


I maybe a tad overly sensitive to this subject right now, because of an e-mail I got the other day from my Soon-to-be Sister-in-law: She wrote asking for help planning my niece & nephew's birthday party, and somehow veered into more personal territory, asking about my recent hospitalization. We talked a bit about how the doctors really don't know all that much, and how frustrating it all is; and how sometimes I feel I am just marking time, trying my best not to aggitate the beast that is my pain, when she completely blindsided me with the following statement -

I just feel you need to find your independence and if that means dying to come back to life so be it. Easy for me to say right? It's crazy, one part of me says "poor girl" and the other says "suck it up" WTF! And you know I am not the only one thinking that!

I don't think I can adequately describe the kicked-in-the-gut, all over chill I got, just reading that. For her to say something like that to me, for her to have the idea that my illness is somehow something I can just "get over" if I try, it's a denial of reality & a very real sort of betrayal.

Also, I got the impression from her "I'm not the only one" and other parts of the e-mail, that she and other family members have discussed this, and that they feel similarly, they just don't say it to me.

I don't know how else to explain it, but the idea that the people close to me... not outsiders who don't see the everyday struggle, or the media, or whoever... but the people around me - who see that sometimes I am so exhausted I cannot speak; that sometimes I can't get my feet to point in the right direction; that I have to leave the party 15 minutes after arrriving because there are too many smells - that these people could still have the even slighest, slimmer of a doubt that I am not in control of what my body does ? Well, stricken might be too subtle a word for how I feel.

"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”).” Under the Medical Gaze Susan Greenhalgh, 2001



This wasn't the first time this has happened, not by far: When you've got an invisible and often controversial illness (or more than one, as is my case), you find yourself justifying your illnesses more often than not. When I first got ill, my siblings often accused me of faking, or exaggerating, my symptoms. One of my cousins told my parents to send me to boot camp; my grandmother suggested prayer as a cure.

In the case of my family, I've had to educate them all over the course of years, just as I've been educated. Initial ignorance of my diseases or their symptoms, treatments, implictions &/or limitations is no longer, in my opinion, a reasonable excuse. Even Soon-to-be Sister-in-law has known me now for 7+ years, and I've been ill the entire time.

So I find it hard to say nothing when self-help book after self-help book, celebrities, religions & much of the general public praise the idea that "what/how you think is what/how you'll live:" If I just thought that I wasn't ill, I wouldn't be ill.

Sure: why haven't I thought of that before? Do they really think if it was that friggin easy, anybody, anywhere would choose to be ill?

"As our society grows more and more health-conscious, good health, too, becomes a virtue, and its absence a vice.” P69 ,The Chronic Illness Experience: Embracing the Imperfect Life, Cheri Register

Listen, I don't discount the Mind-body connection: I know that stress exacerbates my symptoms, just like being stressed out might make your headache worse or being worried might make your stomach hurt. There's truth in that. And there's something to be said for corralling negative thoughts when you can, so that you don't spiral down into depression.

But the idea that I am attracting illness to myself, or not doing everything in my power to heal? That's BS. Major BS.

*In that vein, I wanted to post the SNL Skit that mocked "The Secret", but couldn't find it posted... Here's a line from a review of it, though: "After Oprah and her guests spoke to a man in Sudan via satellite, telling him he could end the genocide by embracing positive thinking, Oprah said: "When we come back, John Travolta will tell us how he used 'The Secret' to make Wild Hogs." *

Between the book & this e-mail, I've been thinking about this a lot this week, and I really can't think of any answers: It hurts to be this sick and to know that there are people in my famiy who doubt me.

Who think I could do something more.

And, knowing that they doubt, makes me doubt myself. Which is something I don't need.

It is hard enough. Having these stupid diseases is hard enough. I'm hurting and I'm sad because I thought I could count on my family, at the very least, to not make it harder.


"...unsolicited and especially unwarranted, advice works as a steady reminder that few people really understand the nature of your illness or care deeply enough to be informed.” P69 ,The Chronic Illness Experience: Embracing the Imperfect Life, Cheri Register

Ok, people...

I realize I've been a little content-light lately, but now I want to talk to you about something very important.

The abundance of scary, supposedly "cute" Easter objects. I dare not call them animals, as they are too, too scary to be in the animal family. They may masquarade as animals, but we all know the truth.

Consider this evidence, culled from our local Target store just today:




"Attack of the Killer Chocolate Bunnies"

Of course, complemented only by -



"The freakish, mutant frog who will EAT YOUR CHILDREN if you put him in their Easter baskets."


Why, oh why all the scary-faux animals? We must protect the children - look at this poor child....

The trauma!

I need one of these...

One of my more "minor" issues is an increased sensitivity to hot & cold. I've talked before about how that issue effects my showering habits - honestly, most showers end without me ever touching the cold water faucet.

This hypersensitivity can be trouble, though, particularly when I'm watching the kiddos. I always err on the side of too cold, and have somebody else double check the temperature of the face cloth or bath water, if they're around. But this is a much better idea. Something to invest in, I'm thinking.

And, BTW, if you don't hang out at Parent Hacks, you definitely should!

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I'm not too fond of the new Blogger, so far: having to sign on every time I try to post is a pain in the butt. On the plus side, there are the handy-dandy post labels - I like. However having entire posts deleted instead of saved - this is a VERY BAD THING. Because I've already typed things, and I'm too out of it to type them all again. So when they disappear, they're most probably gone for good.

However, I do want to retype some of the things I've said to my fabulous commenters, because you guys rock, and I totally appreciate you coming 'round.

Miss Janice - I really can't thank you enough for my surprise: it certainly did come at exactly the right time. (And wasn't it fabulous? Even when he's being a dope, Roarke is totally swoon-worthy.) Also: can I, just for a minute, say that you've got to be nicer to yourself? You're one of the most involved, interesting & thoughtful people I am lucky enough to know. If McHub isn't seeing it, than that's his loss. I see it: your friends do. So give yourself a pat on the back (and him a kick in his arse). Nuf said.

Jo I know you are one of the few people who will take this the right way: I'm so glad they have a name for what's wrong with you! (Hopefully!) I'm always thinking of you - be as well as possible.

And a big welcome to all my first time commenters! Thanks for dropping by!

Sunrise

Sunrise
Originally uploaded by bbackprple.

My Best Shot Monday. Go check out Tracey's pictures (can you believe she had the flu when she took that shot??)

Here's my contribution: It's the sunrise I caught from my hospital bed last week. I like that it's just peeking in between the two buildings.

There's a couple of other new pictures up on my Flickr account, if you're interested: Niece & Nephew among them.

Another meme

From Whoorl (a while back)

1. What curse word do you use the most? We've talked about this before, but I don't curse. Not really, anyways. I'm thinking of working 'bugger' in more - it's a classy kind of curse.
2. Do you own an Ipod? Nope.
3. Who on your MySpace Top 8 do you talk to the most? The sister who lives here, SisterJ.
4. What time is your alarm clock set for? No alarms for me; if I actually manage to fall asleep, I'm going to stay that way for as long as possible.
5. What color is your room? Plain, old, boring white.
6. Flip Flops or Sneakers? Sneakers, untied.
7. Would you rather take the picture, or be in it? Definitely a behind-the-camera kind of gal.
8. What's the last movie you watched? Stranger than Fiction, which I absolutely loved.
9. Do any of your friends have children? Yup. I'm an auntie all over the place.
10. Has anyone ever called you lazy? Sure, but they were wrong then, and they're wrong now.
11. Do you ever take medication to help you fall asleep faster? Yeah, but that's not really my problem, so they don't help.
12. What CD is currently in your player? Yeah, I'm mostly a Media Player listener, now. ABBA's singing right now... the shuffle is awesome.
13. Do you prefer regular or chocolate milk? Lactose intolerant, but I never could stand plain milk. Ick.
14. Has anyone told you a secret this week? Yes.
15. Have you ever given anyone a hickey? No.
16. Who was the last person to call you? One of my sisters, looking for some tech support.
17. Do you think people talk about you behind your back? I know they do.
18. Did you watch cartoons as a child? Oh, boy, did I. I'm not just Disney-fied, I watched them all - Strawberry Shortcake, GI Joe, Smurfs, He-Man & She-Ra. Saturday mornings were the best!
19. How many siblings do you have? I have one brother, four sisters, a soon-to-be sister-in-law & a soon-to-be brother-in-law.
20. Are you shy around the opposite sex? Actually, I'm pretty shy all around... 'cept for here.
21. What movie do you know every line of? Ferris Bueller, hands down. I know bits and pieces of a LOT of others though.
22. Do you own any band t-shirts? Not a one.
23. What is your favorite salad dressing? I like just red-wine vinegar.
24. Do you read for fun? If you've read more than one post here, you know the answer to this is a resounding yes.
25. Do you cry a lot? Depends on who you ask, I guess.
26. Who was the last person to text message you? I don't have a cell phone, so nobody.
27. Desktop or Laptop? Laptop... my precious.
28. Are you currently wanting any piercings or tattoos? It's funny, my siblings all have tattoos, but I can't think of anything I'd want on my body forever. That said, I have thought about, after my miraculous recovery, getting something. I just don't know what.
29. What is the weather like right now? Looks sunny... feels warm-ish.
30. Would you ever date someone covered in tatoos? Yeah, what do I care?
31. Is sex before marriage wrong? Nope.
32. When was the last time you slept on the floor? Hell, I can't even sleep on the bed, people.
33. How many hours of sleep do you need to function? I can, unfortunately, function on less than an hour of sleep. I'd like about 14.
34. Are you in love or in lust? Neither, unfortunately.
35. Are your days full & fast-paced? They're not. But they feel like they are sometimes.
36. Do you pay attention to calories on the back of packages? Yup. Have I mentioned the ridiculous weight gain? MUST LOSE WEIGHT!
37. How old will you be on your next birthday? 28.
38. Are you picky about spelling & grammar? That would be the teacher in me. So, yes.
39. Have you ever been to SixFlags? No: There's one near here now, but when I was younger, there was only Canobie Lake Park.
40. Do you get along better with the same sex or the opposite sex? With 4 sisters? I'm going to say girls.
41. Do you like cottage cheese? No. Ick. Clumpy-ick. Ick
42. Do you sleep on your side, tummy, or back? All three, anything in between, standing up, sitting down, I don't care - if I'm asleep, it's a miracle.
43. Have you ever bid on anything on E-Bay? Too much bidding. On things I don't need. But I waaaaaaant them. I'm on a self-enforced hiatus.
44. Do you enjoy giving hugs? No, and I miss them. They hurt too much, but I miss the connection, being able to touch and be touched.
45. What song did you last sing out loud? I'm Moving On - Rascal Flatts.
46. What's your favorite TV show? You know, most of my favorites are pissing me off right about now: Grey's Anatomy's gone soap opera; Lost isn't asking or answering the right questions; House & Studio 60 are on hiatus. But The Daily Show doesn't let me down.
47. Which celebrity, dead or alive, would you like to have lunch with? Depends on my mood. Today, I'm in the mood to be charmed: Cary Grant.
48. Last time you had butterflies in your stomach? Latest hospital stay, the woman across the hall started to choke on her own vomit, and coded. It was horrible.
49. What's the one thing you wish you had? My health. You know, people always say "Well, at least you have your health." But I don't. So I want it back.
50. Favorite Lyrics? Oh, I could pick a million here, but let's go with this for today: Close to my soul, and yet so far away; I'm going to go back there someday. From I'm Going to Go Back There Someday - The Muppet Movie.

Why do I even bother?

See, here's the thing: I hate to ask my dad questions. Because there's no simple answers: it's all ... "well, you see..." and then 25 minutes of explanations. He sits down and makes himself comfortable and starts talking.

And that's a horrible thing to admit, I know it makes me feel bad, but he's just so rambly...
And he almost never answers the actual question I asked.

Ex:
NTE: How did your doctor's appt go?
Him: "Well, I went in and sat down and talked to him about refilling my Rx, and then... you know I don't like it when they come in and just rush you through everything... Well, I need a new doctor.... And I want your mother to get a new doctor, but she's so stubborn, like with her teeth. You know she needs a root canal, but she doesn't want to go and get it done. But I get so frustrated with these people who are supposed to be helping you, and you're paying and the insurance company is paying them, but do you think that matters to them? Also.... I need a new insurance company, since the company is switching come the next year... "



and now, it's 45 minutes later and he's going on and on about (I am not kidding) the time when he had to write a resume for his job, but he didn't really know the form they wanted it in.

And then he wonders why people don't try harder to keep him in the loop.

I gave up unnecessary apologizing for Lent..

when what I should've given up was Arterial Blood Gasses.

In case you didn't do the little clicky right there, let me show you some of what I consider to be the key phrases in Wikipedia's definition of Arterial Blood Gasses:

"As its name implies, the sample is taken from an artery, which is more uncomfortable and difficult than venipuncture."

and

"Arterial blood is taken from any easily accessible artery..."

Now let me tell you some of the key phrases that Wikipedia's definition is lacking:

"If you happen to have the tiny arteries more commonly seen in a fetus, your technician may have a difficult time obtaining a sample."

"He will then proceed to try and ram the needle through your wrist like a corkscrew."

"During this procedure, you may wish that your vocabulary included more curses, as the ones you know will seem paltry."


"After three kits (6 needles & 8 punctures) in one arm with no sample, your technician may wish to switch arms and try again. You are then well within your rights as a patient to refuse, cry, and/or knee him in the balls."

Unfortunately, I did none of those things. Fortunately, it only took one try in my right wrist to get the sample they needed.

Here's the thing: I am not a needle-wuss. I'm so used to getting blood drawn that I usually don't care at all. During my hospital stay, did I complain that they kept sticking me for blood draws even though I already had IV access? No, I did not. When I left the hospital, I had 8 blood draw holes & my IV hole: no big deal. But this blood gas thing?

Big Huge DEAL.

Ranked all the way at #2 on my "tests they say are no big deal but turn out to be major" list. (Leaving the dreaded Tilt Table Test still as ranking #1, but bumping muscle biopsy, bronchoscopy, & ultrasounds all down a rung. The muscle biopsy I knew was going to hurt more than they said: this ABG was a big surprise.)

All in all, not my most favorite trip to the doctor.


I was in for just a couple of days, so I'm just kind of plugging back in now. Catching up on my e-mail and blogs and what all y'all been doing since I've been gone.

The 'trip' to the hospital has provided me no more answers, unfortunately. I may have to repeat some of the tests before we can tell anything; some of the other tests are in, but inconclusive. My body is, apparently, one big fat question mark.

And while this was not news to me, I had a ton of new nurses, doctors, med students, student nurses, & volunteers who were all hearing the conundrum that is my medical history for the very first time. Some of them were skeptical, others excited & intrigued. I swear to you that one of them clapped her hands in excitement when she heard about the brucellosis. Mostly, though, I got a lot of: "Well, gee, that's odd. And significant. But we don't know what it means. Or how to help. Or, really ... anything."

So, while I have stories aplenty to post from my time on the ward, for today, I am SICK to death of doctors, tests and all that jazz. I'm going to wander around and see what you all have been doing ... it's got to be better than this!



<

Gimme Some!

Gimme Some!
Originally uploaded by bbackprple.

Here's "My Best Shot Monday" shot... Youngest Sister and Only Niece eating their lunch together. Only Niece is much more interested in YS's lunch, however. If she hadn't have been strapped in, she would've gotten it, too.

How hard is it

To find the frickin moon?

Not the wake-up call I requested:

That was the view from my window this morning, as a car spun into my front yard and crashed into the tree about 24' from the wall my bed is against. Thanks to the CFIDS-Insomnia, I wasn't really asleep, but it was early enough (6:30) that I was in that hazy "It's still dark and I will continue to lay here pretending I am asleep" vague phase. The sound of the car crashing into the tree was so loud, but incomputable to my sleepy brain. The wind had been whipping, and I figured it had knocked over a few of the barrels or something. A quick look out my window, however, had me immediately grabbing my phone, for my first-ever call to 911:

In under 6 minutes, a fire truck was on the scene, and firemen were in the yard trying to pry open the passenger's side door (because the driver's side was crumpled closed). The woman driving the car was injured (a gash on her head), but not majorly, and took one of three ambulances to the hospital. Within 30 minutes of the accident, a tow-truck was onscene, maneuvering the totaled car off of the sidewalk and out of our yard.




All in all, falls into the "Holy Crap that Could Have Been SOO Much Worse" category.

Here's my February Perfect Post: Heather Anne's very sweet "Love Anyways".



And a couple of the runners-up:

For Laughs - Paperback Writer's List of "10 Things I hate about your protagonist!" (Particularly #5) & Anti-Valentine Anthems over at The Lipstick Chronicles


Two huge thumbs up to Dooce, for, as always saying what I wanted to say, only better.


In thenever endingg quest for a better me, I'm going to give credit to Wishful Thinking's post 5 Reasons Why Enthusiasm is Better than Confidence, and one of my very favorite sites, the Happiness Project, for her Secrets of My Adulthood. Both made me think (& wish I'd thought sooner.)


Lastly, there's a brief blurb in an editorial from the Ohio News Herald (found
here) about how the CDC shouldn't be wasting it's money on a CFIDS awareness campaign. It's a short five sentences, yet manages to be chockful of misinformation and condescension. I think you all can see why I wouldn't be too pleased with that. But what's more important are some of the comments that follow it: many are from CFIDS sufferers, who give information, first hand accounts, and call the editors to the carpet for saying that CFIDS isn't "important enough" to warrant such funding. (There's a few loose nuts sprinkled in there too, but what are you gonna do?) I just think all those little notes might make the editors think twice about what they've said, particularly some of the more grim statistics ("To put this into perspective, CFIDS is over four times more common than HIV infection in women (125/100,000), and the rate of CFIDS in women is considerably higher than a woman's lifetime risk of getting lung cancer (63/100,000).")

Via 100 Miles From Where

*Look at the list of books below.
*Bold the ones you’ve read.
*Italicize the ones you want to read.
*leave blank the ones that you aren’t interested in.
*If you are reading this, tag you're it.

1. The Da Vinci Code (Dan Brown)
2. Pride and Prejudice (Jane Austen)
3. To Kill A Mockingbird (Harper Lee)
4. Gone With The Wind (Margaret Mitchell)
5. The Lord of the Rings: Return of the King (Tolkien)
6. The Lord of the Rings: Fellowship of the Ring (Tolkien)
7. The Lord of the Rings: Two Towers (Tolkien)
8. Anne of Green Gables (L.M. Montgomery)
9. Outlander (Diana Gabaldon)
10. A Fine Balance (Rohinton Mistry)
11. Harry Potter and the Goblet of Fire (Rowling)
12. Angels and Demons (Dan Brown)
13. Harry Potter and the Order of the Phoenix (Rowling)
14. A Prayer for Owen Meany (John Irving)
15. Memoirs of a Geisha (Arthur Golden)
16. Harry Potter and the Philosopher’s Stone (Rowling)
17. Fall on Your Knees(Ann-Marie MacDonald)
18. The Stand (Stephen King)
19. Harry Potter and the Prisoner of Azkaban(Rowling)
20. Jane Eyre (Charlotte Bronte)
21. The Hobbit (Tolkien)
22. The Catcher in the Rye (J.D. Salinger)
23. Little Women (Louisa May Alcott)
24. The Lovely Bones (Alice Sebold)
25. Life of Pi (Yann Martel)
26. The Hitchhiker’s Guide to the Galaxy (Douglas Adams)
27. Wuthering Heights (Emily Bronte)
28. The Lion, The Witch and the Wardrobe (C. S. Lewis)
29. East of Eden (John Steinbeck)
30. Tuesdays with Morrie(Mitch Albom)
31. Dune (Frank Herbert)
32. The Notebook (Nicholas Sparks)
33. Atlas Shrugged (Ayn Rand)
34. 1984 (Orwell)
35. The Mists of Avalon (Marion Zimmer Bradley)
36. The Pillars of the Earth (Ken Follett)
37. The Power of One (Bryce Courtenay)
38. I Know This Much is True(Wally Lamb)
39. The Red Tent (Anita Diamant)
40. The Alchemist (Paulo Coelho)
41. The Clan of the Cave Bear (Jean M. Auel)
42. The Kite Runner (Khaled Hosseini)
43. Confessions of a Shopaholic (Sophie Kinsella)
44. The Five People You Meet In Heaven (Mitch Albom)
45. Bible
46. Anna Karenina (Tolstoy)
47. The Count of Monte Cristo (Alexandre Dumas)
48. Angela’s Ashes (Frank McCourt)
49. The Grapes of Wrath (John Steinbeck)
50. She’s Come Undone (Wally Lamb)
51. The Poisonwood Bible (Barbara Kingsolver)
52. A Tale of Two Cities (Dickens)
53. Ender’s Game (Orson Scott Card)
54. Great Expectations (Dickens)
55. The Great Gatsby (Fitzgerald)
56. The Stone Angel (Margaret Laurence)
57. Harry Potter and the Chamber of Secrets (Rowling)
58. The Thorn Birds (Colleen McCullough)
59. The Handmaid’s Tale (Margaret Atwood)
60. The Time Traveller’s Wife (Audrey Niffenegger)
61. Crime and Punishment (Fyodor Dostoyevsky)
62. The Fountainhead (Ayn Rand)
63. War and Peace (Tolstoy)
64. Interview With The Vampire (Anne Rice)
65. Fifth Business (Robertson Davis)
66. One Hundred Years Of Solitude (Gabriel Garcia Marquez)
67. The Sisterhood of the Travelling Pants (Ann Brashares)
68. Catch-22 (Joseph Heller)
69. Les Miserables (Hugo)
70. The Little Prince (Antoine de Saint-Exupery)
71. Bridget Jones’ Diary (Fielding)
72. Love in the Time of Cholera (Marquez)
73. Shogun (James Clavell)
74. The English Patient (Michael Ondaatje)
75. The Secret Garden (Frances Hodgson Burnett)
76. The Summer Tree (Guy Gavriel Kay)
77. A Tree Grows in Brooklyn (Betty Smith)
78. The World According To Garp (John Irving)
79. The Diviners (Margaret Laurence)
80. Charlotte’s Web (E.B. White)
81. Not Wanted On The Voyage (Timothy Findley)
82. Of Mice And Men (Steinbeck)
83. Rebecca (Daphne DuMaurier)
84. Wizard’s First Rule (Terry Goodkind)
85. Emma (Jane Austen)
86. Watership Down(Richard Adams)
87. Brave New World (Aldous Huxley)
88. The Stone Diaries (Carol Shields)
89. Blindness (Jose Saramago)
90. Kane and Abel (Jeffrey Archer)
91. In The Skin Of A Lion (Ondaatje)
92. Lord of the Flies (Golding)
93. The Good Earth(Pearl S. Buck)
94. The Secret Life of Bees (Sue Monk Kidd)
95. The Bourne Identity (Robert Ludlum)
96. The Outsiders (S.E. Hinton)
97. White Oleander (Janet Fitch)
98. A Woman of Substance (Barbara Taylor Bradford)
99. The Celestine Prophecy (James Redfield)
100. Ulysses (James Joyce)

50 read - Exactly half. There were others, like Ulysses, that I started but never finished, so I didn't count them. And there's still a handful on my TBR pile. (Pile, my ass... it's more like a TBR heap at this point.)

My Best Shot Monday

Again, through Picture This, here's "My Best Shot Monday:"



She picked 3, but I've got two for you today. Above is my best 'technical' shot this week: me figuring out how to use the macro/micro button on my digital camera. And below is my favorite little guy, showing his evil Jedi side...



He told me the other day that I could call him "Lord:" I was a bit confused, thinking he meant God type of Lord. "No... AuntieNTE, like 'Lord Vader,' you can just call me Lord, though." Ok then, Lord it is.

Having nothing to say

isn't really a good excuse for not blogging.

Because, honestly, I do have things to say: TONS of things to say. But somewhere between my brain and my fingers, those things get ... lost. Or twisted. Or too complex to explain. There's so much going on in my life, and I find myself just wanting to burrow into a deep hole and avoid it all. Which must not be allowed (for any real length of time), so here I am.

Since I still don't want to tackle anything too ... heavy... how about a sort-of funny & totally screwed up story? The kind of thing that could only happen to me?

A few weeks ago, about a week after my last doctor's appointment, I had a call from Zach (my doctor) that went something like this:

Zach: "NTE, I have some of your test results here, and, well, they don't make any sense."

Me: "Zach, when do my test results ever make sense?"

Zach: "Well, that's true. But about these results: your ammonia level is 78."

Me: "I have no idea what that means."

Zach: "Normal, or the highest level of normal, is about 43. So, you're near double that."

Me: "Hmm... Yeah, I still don't know what that means, except that it doesn't sound good."

Zach: "Well, I don't really know what it means either. But it's significant."

Me: "Significant how?"

Zach: "Yeah, I'm not sure. But it has to mean something."

Then he explained that he had a call in to a specialist, asking what they thought it could mean, and what we should do about it. He promised to call me back in the next few days. Skip to a few days later:

Zach: "So, I've got your test results here, and there are some abnormalities that I think we should discuss..."

Me: "Zach, you already called and told me this, remember? We're waiting for the specialist to call back?"

Zach: "Oh. No. Well, yes, that's true. But this is different. Let me ask you a question: Have you ever been bitten by a squirrel?"

Me: " "

Zach: "No, seriously: ever been bitten by a dog or a squirrel, or a woodland creature?"

Me (goggling. Partly because I don't think I've ever heard anyone actually say the words "woodland creature," and partly because, well...) "WHAT?"

Zach: "Bitten. By a creature of some sort. A dog maybe?"

Me: "Um... NO."

Zach: "Are you sure?"

Me: "Um. Yeah... Pretty damn sure. I think I would remember that sort of thing. As a matter of fact, I'm pretty sure that's how I would go around introducing myself 'Hi, I'm NTE. Let me tell you about the time I was bitten by a small woodland creature!' I'm going to stick with no on this one."

Zach: (sounding disappointed!)"Oh. Really? Well, then I can't really explain this, but you have this bacterial infection in your blood. It's called Brucellosis, and most people get it by being bitten by animals."

Me: " "

Me: "So, what does that mean? Does it explain my symptoms? Is it a co-infection (cuz I have other ones)? Can it be treated? Cured? Um... What does this mean????"

Zach: "Well, I'm not really sure. But it's significant."

Me: (Screw significant.... WTF does it mean?): "Right... significant how?"

Zach: "Well, it could explain some of your symptoms. It could be something that isn't even really an issue. It could be a major player because of your weakened immune system... We'll have to run some more tests to be sure, exactly. And I've called a specialist..."

No more useful information was forthcoming, just a lot of "significant" findings that nobody knows what the hell they mean in relation to me. I have since repeated both blood tests, and confirmed that I have these two "significant" issues. And, yes, I'm more than a bit worried about the fact that my liver isn't working correctly and I somehow contracted yet another infection, but for today? Let us, just for today, focus on this: my doctor was SAD that I hadn't been bitten by a squirrel.

He was hoping I had been!

Also?

He must think I am the stupidest person ever, to have been going to him for almost 4 years now, to have some sort of mystery illness, and to never have mentioned it to him. "Yes, I know we're not sure where these symptoms come from, or what is totally screwing my body up, but I'll just keep the fact of my woodland creature adventures to myself... Because they couldn't possibly be connected." What kind of dolt would I have to be?

That said, my mother now says that my grandmother's poodle once nipped me when I was a baby (young enough to be crawling after the dog enough to piss it off). I wonder if a tiny nip 26 years ago could account for it? I'll have to ask when I see him this week (apparently, there are different types of Brucellosis, so we have to have mine DNA tested - who knew?)

So, how about you, internet friends? Ever been attacked by woodland creatures? I promise not to be disappointed if you say no. ;)

If you've spent some time in the blogosphere lately, I'm assuming that you've heard about the Edwards blogger brouha-ha. If you haven't click over here:

But here's the thing: if you haven't spent time in the blogosphere, I doubt that you've heard anything about it.

I'll grant you that I am nowhere near a news junkie - We've talked before about how my... oversensitivity to other people's problems means that I tend to boycott the news as much as possible. - But, I usually do hear something about the major things that are going on. (I'm not counting Anna Nicole, which, by all that is holy is a personal tragedy and NOT a global crisis!) When you're television is on for as many hours of the day as mine is, you can't help but hear bits and pieces of what's on the news. There's teasers during commercials, comedians & talk shows, what's showing on the news while I'm waiting for the weather to come on. For starters. So, I do tend to hear things, and not a single mention of this situation.


Given the - in my opinion, righteous - outrage of bloggers, the tone & frequency of posts, the seriousness of this issue, I'd have thought it would be mentioned... somewhere. And that's just sketchy.

Just a little timewaster

Still a bit knocked out ---> Colossus, unfortunately, had nothing to do with it. ;)

Hope to be back tomorrow, with something, anthing to say.

Here's my Photo Favorite

from this past week. Best Photo Monday, with Picture This.

Here's SisterJ & her new fiancee, pre-proposal:




The fact that they started out the day holding hands and ended it doing the same is a good sign, I think.

Living in fear

I am totally skipping over the fact that my family is insane, and can not spend any time together without it ending with somebody screaming "FUCK" in someone else's face. We'll talk about that later. Along with the fact that I have my second sinus infection in less than two weeks (which, come to think of it is probably just one big sinus infection that took a nap for 5 days or so and then woke up again). Those are not today's topic, although they're both weighing heavily on my mind (one, literally, since my head feels like it weighs 200 pounds right now).

No, those discussions must wait, because I'm facing a very real threat: one of my sisters got engaged yesterday.

If you have sisters; or have ever been in a bridal party; or ever knew anyone who got married or was in a bridal party, you can understand just how terrifying this is.

I have four sisters & a soon-to-be sister-in-law. I've been in two weddings, and am just about the only single girl left from my group of college friends. I know the kind of drama queens that exist in my family. I know just how volatile it can be to mix those drama queens with dress fittings, shower planning, and the overblown importance of wedding minutiae.

In my own personal terror alert system, we're definitely on red.

Don't be mistaken: I am exceedingly happy for SisterJ (age 24). She's found a wonderful man, who compliments her in every way. His sweetness & calm demeanor are a good influence on my over-the-top, outspoken little sister. And they have such a genuine connection, a loveliness that sort of shimmers around them. That they've both realized just how special their relationship is, and to really want to commit to each other is fantastic.

But the idea of their marriage is one thing: the reality of getting to their wedding will, most likely, be something completely different.

It is this thought that makes me quiver in fear.

It's the idea of dealing with the infighting about sandals with straps or sandals without, or whether or not you have to have your toenails painted a particular color. It's the fact that napkin colors and up-doos will suddenly take on the importance of eliminating the threat of AIDS in our lifetime. It's the flurry of e-mails back and forth - and forth and back - when you can't get more than two people to agree on any specific date for any specific thing. It's the looming specter of fitting rooms and strapless bras, bridal magazines and flower arrangements, petty arguments and mothers-in-law.

"Always the bridesmaid:" almost as scary a notion as "Bush accepts unprecedented 3rd term!"

I was watching a rerun of Without a Trace, recently, and there was this subplot about a man whose child had been abducted years ago & had never been found. He started talking about how everyone else in his life - his wife, his counselor, his friends & family - just kept telling him to "move on," and how hard it was to have this piece of yourself missing, to have to hope. Hoping is difficult, it's so much harder sometimes than just giving up. The man said that this battle, this war inside himself to either keep hoping or let it go, felt like he was drowning, but slowly. Because he knew that things were wrong in his life, without his son, but he just didn't know how to pick up the pieces and trudge forward with them. Didn't know if he should, or even if he could.

And somewhere in the middle of his speech, I realized: "That's me." I've been hoping, remembering my past, as if it could ever be my future. I'm surrounded by people who just keep saying I've got to "get on with my life," and yet no one can tell me how to do it. ~


“One day, I had a father, and the next day, I had a story to tell.” I stole this quote from a book: I wish I could remember which one it was. But it was another line that went straight to my heart. It's me, again.

Over the years, I've met quite a few people (some are even close to me) who've said something along the lines of "I don't know how you do it," or "I don't think I could do what you do." And, while I know it's meant to be a compliment, it always confuses me, because I wonder what they think they would do, in these circumstances.

There were no choices for me: as so often happens in life, things changed in that one minute, that split-second that I went from healthy teenager to a person with a chronic illness. One day, I had my health, a normal-average life all set up for myself, and the next, I had a story to tell. The story I tell here: my story.

All I've been doing, ever since the beginning of this unexpected story, is searching for the pieces, trudging, trying not to drown along the way.


And who isn't?

I'm a little Lost....

Tonight's episode of Lost didn't hit any high notes for me, but these comments, from the Open Thread over at MamaPop, did:


Amanda:
"because honestly? ben, as my husband exclaimed during his brief wake-up from anesthesia, is “probably the creepiest fucker on television today.”

Amanda :
Feb 7th, 2007 at 11:23 pm
and i was all, “nope, PAULA ABDUL.” and he was all, “touche.”
--------------------------------------


lily
Feb 7th, 2007 at 11:24 pm
I saw an interview with the Ben guy on E! and he was just as creepy as his for-reals self.


KJ
Feb 7th, 2007 at 11:25 pm
He’s definitely Creepy McGee


Amy
Feb 7th, 2007 at 11:25 pm
Yeah, I think it’s safe to say that the actor who plays Ben probably doesn’t have a huge career in Romantic Comedies ahead of him.

134 lily
Feb 7th, 2007 at 11:25 pm
hugh grant, he is not.

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

Because, HOLY CRAP, how freaky was it when he opened his eyes? ICK.

Cuz I needed some time-a-wastin, crazy ego boosts....

You paid attention during 97% of high school!

85-100% You must be an autodidact, because American high schools don't get scores that high! Good show, old chap!

Do you deserve your high school diploma?
Create a Quiz

I do not like that they don't tell you which ones you miss. (I'm pretty sure it was the math.... math is not my friend.)

Dude! You're 100% from Massachusetts!

Dude! Me and Sully and Fitzie and Sean are gonna hit Landsdowne tonight after the game, hang out at the Beerworks. I'll pick you up at the Coop at 6.

How Massachusetts are you?
Quiz Created on GoToQuiz

Yah, that's a shocka.

Your Final Score Was 77%

Good Job! You definitely know your TV theme songs. It might be possible that you are watching too much television.

Guess the Theme Song
Take More Quizzes

Hmm... I could've done better. Next time, no Daily Show while quizzing.

What Kind of Reader Are You? Your Result: Dedicated Reader You are always trying to find the time to get back to your book. You are convinced that the world would be a much better place if only everyone read more.
Obsessive-Compulsive Bookworm
Literate Good Citizen
Book Snob
Fad Reader
Non-Reader
What Kind of Reader Are You? Create Your Own Quiz

Another Shocker. Particularly the non-reader = 0 part.

Good News!

My presh-us is back! The CompUSA people have fixed and returned my computer in a very efficient manner. Which is good, because of the withdrawals, people. You don't realize how much you are abusing Wikipedia until you don't have it at your instant beck and call. I had urgent Googlish needs: Does the In Death novella from Out of this World come before or after Betrayal In Death? What version of Windows Media Player is current? Who sings this song that's stuck in my head??? All vital, vital questions, I know.

But, I made it. It wasn't as bad as I thought, actually. One week laptop-less is not the end of the world. I'm just glad to have it back, so I can talk to all of you fine people again.

And check PostSecret. And ADWOFF. And all of my beautiful Bloglines!

It's a little bit sad, isn't it? Oh well. I don't care.

Here we go again

I'm off to deliver my laptop to the CompUSA guys, in the hopes of having an actually functioning USB port. Who knows what my chances are? I'll be checking in on my parent's land line, but not as often, because it doesn't live in my room. So... till then, have a happy Monday (and only a Monday, right? Cuz I'll totally have it back by tonight... right CompUSA guys? ....) or whatever comes next.

Oh, and if you feel like it, you can check out the best shots of last week via Picture This, here.

My best shot from the past week was this one, of Baby Girl, messy face and all --->

Be back soon!

Misadventures in Closed Captioning...

Live, at the Screen Actor's Guild!

Thomas "Hatin" Church, with co-nominee Robert "De Value"


Oh, and also? Could somebody please tell actresses that bras are not optional pieces of an outfit? Please?

I meant to say ...

One of the reasons I keep this blog anonymous (or, mostly anonymous), is that I need to be able to write things like this post without worrying that my family will come across it while random Googling. Because I need this space to be able to say things I know would be hurtful to them, or worrisome, or just none of their frickin business. Because I need to be able to say what I need to say, get some things out of my head, without worrying about how this one or that one would take it.

And in the past two weeks, I've written very little, but only because I've had so much to say.

Because I've somehow found myself in the middle of everybody's lives, and I don't know what to do. Note: the following rant is long and self-pitying. Feel free to skip.

In the past little while, I've learned the following things:

- that my suspicions have been justified: Oldest Brother has been stealing and abusing my prescription drugs (and the drugs of others). For months. I am afraid, hurt, angry, disappointed, enraged, confused, scared, conflicted, and a million other things about this. And I'm so unsure as to what comes next.

- that Youngest Sister/SisterK has an entire lost family who found her through MySpace. And that she's been slacking off in school, with her violin, in her exams, since she got a new boyfriend. This is one of those mixed blessings: at 18, and without either of her natural parents, SisterK has a lot of questions. So this new set of aunts and cousins (from her mother's side), is a wonderful thing for her. It's also "hell-a confusing," and comes on top of a lack of focus/bit of senoritis on her part.

- that SisterJ didn't get the promotion she'd been hoping for. Or the loan. Or the new, cheap apartment she'd been promised. And that her depression isn't getting much better (Gee, I wonder why?)

- that my favorite cousin is finally pregnant, but they aren't telling anybody yet, because it's too early & it's taken so long to get here, so she's really worried that things could still go horribly wrong.

- that my Grandmother's sight is getting so much worse that they're telling her to be prepared for the fact that she'll probably be totally blind in one eye, within the next year. This is the Grandmother who, like me, takes such pleasure in reading.

- that my body is still in the running to be America's Most Screwed-Up Body, even though I'd really like to bow out of the competition.

- that the uncle we don't talk to (AKA, one of The People Upstairs) quit his job. Which means that my grandmother is NEVER. GOING. TO. EVICT. THEM. Regardless of her promises. NEVER.

- that SisterC is still fighting with the boyfriend-she-moved-in-with on a daily basis. And that, sometimes, she's afraid of him. And they live 45 minutes away, so what am I supposed to do with that information? She won't leave him; she doesn't want anybody to talk about it at all, even.


It's really been one of those weeks where, even though you try to remind yourself that things could get worse, it's hard to see how. Until it does. And, not everybody knows everything: I'm keeping this part from my parents, keeping that part from one of my sisters. And, so much of it is stuff I can't control, so I feel like I'm just spinning my wheels.

I seem to be the only one who knows almost everything, and it's like a physical weight. It's so hard to decipher, 12 years into it, what I would feel like if all this were going on & I wasn't sick. How different my reactions would be. It's also stupid to try: it doesn't matter, since I am sick. This is where I am, this is where I have to deal with these things from.

It's also, just now, feeling a bit one sided. (Ok, maybe 8-vs-1 sided, if that makes more sense:) Everybody can come to me, everybody's problems are on my shoulders, but who can I go to? How many sympathetic ears are available to me? And this is not all their fault: a lot of it is me - I find it so difficult to explain myself, or ask for the emotional support I need, when they are all fufilling so many of my physical needs already. Or, so many of my issues are so longstanding, so unchanged that going over them again seems unbearable/useless.

So it's good to have this outlet, to be able to just dump it all here and not worry (too much)about overburdening someone whose plate is already full or being overly melodramatic. Even if no one was out there listening, it would be good to have this place to just let it all out.

And the fact that you guys are listening? Is just overwhelmingly appreciated.

Because just having this place, just being able to blurt it all out & not worry that someone will be hurt further, is so important to me.

Today is Blog for Choice Day, and the question to be answered is "Why are you Pro-Choice?"

This is something I was kind of iffy about being involved in, at first.
Mostly because I don't feel overly qualified to talk about being pro-choice: Unlike so many other women, it's an abstract ideal to me, something that has never come into play in my own life. For reasons we've talked about here, my life as a young woman has been as far from normal as you can get. So I have never had to deal with, firsthand, the issues surrounding unwanted pregnancies. I feel a little bit unqualified to preach on the subject.

And yet.

And yet, I am a young woman who has been faced with making numerous, life-altering decisions about my body. I'm a young woman who's had to make difficult choices about treatments and procedures that have changed the path my life has taken. I am a woman who will continue to make these decisions for myself, never knowing if I am making the right choice, only knowing that I have to choose.

My decisions have been medical in nature, but they've also been influenced by my ideals & my goals for my future; social & familial pressures; the best information that's available to me; financial restraints; where I've been in my life - healthwise, professionally, or personally; & what I thought I could handle at that specific time.

And, if you think about it, all of these things - all of these factors and fears and issues - are the things that come into play when you're talking about a woman's right to choose.

Now, deciding to have an abortion - or to continue a pregnancy - is entirely different from deciding whether or not you opt in for the next dangerous treatment, or decline to undergo the next potentially harmful test. They're not the same, in so many ways. But they are the same in one very important way: My body - My choice.

That's what it all boils down to, I guess; All my untested ideas about what I would do in that situation, or how I would counsel my friend or one of my sisters, should she find herself in need of my help. It all comes down to ---> Her body, her choice.

It may seem simplistic, perhaps even naive, but I don't expect that my parents or my significant other, even a doctor would be able to override any other medical decision I might make. Or that there could be a law denying me the right to make these decisions: it's ludicrous to even imagine that such a law could be passed. Not in our country.

Why should this decision - even though it's got a zillion different aspects to it, when you come to the core of it, this medical decision - be any different?

Comment away: I'd like to hear your takes on it.

One of the things I love, love, love about having my laptop is that I can - & do - leave it on all the time. (I'm in denial about having to bring it back this week. De-ni-al.)

On and online, almost all the time.

It's fabulous because anytime I have even the slightest thought about something, I can type it right into this here blog (and save it as a draft, so you poor people don't get messy in the explosion from my brain). I can go right to my library and request any random book I hear mentioned on TV or read about in a magazine. If there's a song I want to hear more of, or a recipe I can't remember: it's all right here.

Also, most frequently, I can use it to fill my head with more useless trivia.

And the gold standard for answering questions - any tiny little question that pops into my head - is Wikipedia.
Wikipedia has solved a million, trivial issues for me.

Today's example:

Re-reading a book, I came across the phrase Tinker to Evers to Chance. It was obviously a baseball reference, but I am obviously NOT a baseball person. But, I love history, and poems, so imagine how great it was to type the phrase into Wikipedia and get this response.

Ah.. Wikipedia. What did we ever do without you?

Something I'm not going to want to explain to the tech guys

How Nerds wound up in my keyboard.

Thankfully, that didn't happen (it was a close call though).

Sometime in the next week or so, my laptop has to go back to CompUSA for yet another tweaking. I've had the computer for 2 years now, and this is its second such check-up. Last time, I wound up having to mail it back to HP, where they replaced the hard drive. I was not exactly pleased, but it would freeze-up randomly, and that was kind of prohibitive.

This time, two of my three USB ports have just quit working. As in, one day they worked, the next day... zip. And the third one is kind of temperamental. So... Having uninstalled and reinstalled the drivers, and given the fact that the Device Manager tells me they are working perfectly, and after three different tech guys (who all think I am very stupid), it's got to go back. Again.

But first, I've got to back up my hard drive, just in case they decide to wipe me out again. Which means I need to buy an external hard drive, which wasn't exactly in my budget, but I'm figuring it out. I'd appreciate any brands to look for/stay away from, if you know anything about this kind of thing.

In other news, the steroids were definitely making the flare worse. Not very nice of them, and completely in opposition to everything Zack (my doc) would expect them to do. Yet another example of NTE's completely freakish body, when, seriously, we had plenty of evidence already, thank you very much.

False advertising

Today, I finally got around to watching my Netflix copy of Little Miss Sunshine. Now, I've heard nothing but good things about this movie since it came out this summer, and I think that really interfered with my enjoyment of it.


One of the problems with never going to the movies (Once in 7 years, people.) & waiting for it to come around to my turn in the grander Netflix queue is that I've seen a lot of the best parts of a movie already. Between little clips here and there, commercials, & what people tell me, a lot of the key parts of the movie I've already experienced. So they're not that big of a deal in the movie. I'm not surprised by the things that probably should be surprising.

But I think what happened with LMS was about hype. I kept hearing about how funny it was, how it was one of the funniest movies of the year, of the past few years; it has Steve Carell in it, and any of my Daily Show people is a must see for me; the commercials were cut to make it appear like some lighthearted comedy; everyone agreed: FUNNY MOVIE.

So I went into it expecting it to be hil- ar -ious. And... it wasn't, really.

It was sad and moving and heartbreakingly realistic and a lot of other things, but it wasn't laugh out loud funny (for the most part - more about that later).

So as I sat there watching it, I was let down that it wasn't turning out to be sooo funny. And I was almost to the point where I was going to just shut it off, I was so not in the mood for what it was offering me.

I was grumbling though, watching it. Thinking of all the reviewers and sisters (bad sisters) who had misled me. Giving the movie a pretty poor rating in my head - almost hating it.

I stuck it out though, and came around to the last 10 minutes of the movie. Which were AMAZING. And immediately bumped the movie waaaaaaaaaaaaaaay up in my estimation.

So, I'll forgive all those critics and reviews and sisters, because the last 10 minutes made up for all of it.

But, it's still not some lighthearted comedy, people.

Bring tissues instead.

So, it's Tuesday

(trust me, even knowing the days of the week is a HUGE improvement over last week).

Hi everybody! I want to thank you all, again, for all the warm thoughts and well wishes: I want to post about the flare, and at the same time I don't. Because I am sick.to.death. of it. The worst (of this one anyways) seems to have passed, and for that I am very, very grateful.

So, let me start with some cleaning up:


PowersTwinB said...
Hi, I am new to blogger...I was wondering if you could please give me the URL for the But You Don't Look Sick board? I have fibromyagia and arthritis...sounds just like my kind of place...And please come and visit my new blog?

PowersTwinB: I will certainly stop by your new blog: welcome to the blogosphere! The address for the BYDLS boards is: (trickily enough)www.butyoudontlooksick.com/boards: it is a fabulous and welcoming community, so please stop by.

To the e-mailer anon, who asked if I could, specifically, talk about my diagnoses. No. But only because everytime I go to the doctors, they fiddle with them all a little bit more. But the things that just about everybody seems to agree on are these:
Chronic Fatigue Immune Dysfunction Syndrome. On that page, you cn find most of my other diagonses as well: Fibromyalgia, Postural Orthostatic Hypotensive Syndrome, Multiple Chemical Sensitivities (aka the "I am allergic to everysinglethingevermade syndrome") & most of my symptoms. The CFIDS diagnosis is pretty much useless: it's a clump of conditions with various causes and nobody really knows why they clump together the way they do. It's a blast. Particularly the hit-or-miss aspect to treatments. Fun and games, I tell you.

Under the umbrella of CFIDS comes the various things that make my everyday so enjoyable: an immune system that lacks the capability to protect me from illnesses (hypogammaglobunemia), asthma, chronic sinusitus, brain fog, and on and on. In the past few years, the pain aspect of the syndrome - the Fibromyalgia, it seems - has claimed center stage. Most of my efforts have been focused on getting that - just the overwhelming pain - into some sort of managable form.
This has shown me two things, really: 1) A person can live with an obscene amount of pain, even when they may wish it otherwise and 2) Very little else matters, when you're in that kind of pain. This past week, for example, had the house been on fire, I don't think I would have noticed. And if I did notice, I doubt very much that I would've cared: there was only me and the pain and the idea of not making more pain.

Ah, see what I did there? I said I wasn't going to talk about it, and then I did. Boo.

Anyways, that wraps up all the loose ends, I think; I should be back later with something completely different to talk about (even if I have to make it up!)

Thanks again, for sticking!

Peek-a-boo!

I am feeling semi-human again, and, now that my brain has kicked back in, I'm missing all of my inter-web-peoples. So, I'm hoping to be back tomorrow, full of posting goodness. (Also, I will answer some of the e-mails/comments that I've been meaning to get to. I promise. First thing.)

I have nothing positive to say. In fact, while I hate just leaving you all hanging, my brain is having a hard time stringing together more than two words in any logical way. This flare is reminding me just how horrible these stupid diseases can be.

BUT, I seem to be heading towards the downswing --> the beginning of the week was confined to dark rooms & tears, pain so fierce it made me throw up, & a fotress of pillows that were all too hard. So this is a step in the right direction. I hope to be back soon (I've had an entry in my head about how some people know me, and why I still want this to be an 'anonymous'-ish blog). And will try to wander through the 400+ entries that await me in my Bloglines account, because I find myself wodering what's going on with all of you. I appreciate all the well wishes, wholeheartedly.

Oh god, you are all so lucky Blogger wasn't working earlier. Because I am all over the place today, and the rant I wrote got eaten. I'm taking that as a sign to post about something much nicer: the holiday surprises roundup!

Remember the Secret Santa post?


Ice Cream Mama helped me out right off the bat, fufilling three wishes on the very day I posted. She doesn't wear smelly stuff, recycles and gives to charity. Ice Cream Mama should get some bonus points, people. Plus, she was a new-to-me blogger, so I got a new friend in the bargain!


A few days later, yet another wish came true, when I found this in my inbox:

Hello, I’m the executive producer at snapfish and wanted to give you your Christmas wish. I need your first and last name and email address and I’ll add 50 print credits to your account.

Btw- I tried the candycane kisses they are AMAZING!!

Thanks for using snapfish!!!

deanna dawson
executive producer snapfish.com by hp

HOLY SNAPFISH, Batman! I could not believe it. And Deanna was true to her word ~ I soon found my Snapfish account credited 50 pictures. That I then used (plus 150 or so more) when I uploaded our Christmas photo bonanza. They certainly came in handy, and I could not have been more surprised or pleased: the fact that someone from the company took the time & did this really means a lot to me, as a consumer. It was just a plain old nice thing to do, and it much appreciated by me, I can tell you.

Also, Deanna shared with me a love for the CandyCane Kisses. I think, perhaps I may have not stated enough how much I love these Kisses. I may have explained it best in my reply to Deanna's e-mail: I really can't thank you enough! And the Candy Cane Kisses? I'm thinking about buying some bags and sticking them in the fridge, because what am I going to do when I go to the store and the guy says they don't have any because it's seasonal? For all of our safety, I think freezing some will be best.

Cross out "thinking about," and replace it with "Have asked Mum to empty the freezer & buy every single bag she sees," and you might get an inkling as to my passion for the CandyCane Kisses.

So, I guess Secret Santas really do exist, and it was a pleasant surprise to learn it!

On another front, there was the Secret Spoonies exchange that I was lucky enough to participate in over at the But You Don't Look Sick message boards. If you're not familiar with the board, it's for people with chronic (and often invisible) illnesses, and it's a place where I find a lot of comfort and support. On the boards, spoons are a symbol of good health, energy, resources, etc. (It's based on the founder of the BYDLS site, Christine's very true and still understandable Spoon Theory of what it's like, living with chronic illness.)

The Secret Spoonie Exchange was wonderful! I found an extendable spoon online, here , that I sent, along with random other goodies, to my spoonie.

And my Secret Spoonie sent me enough Texas Loot to give me a drawl. I got texas jelly beans, a texas flag, and a texas spoon.

And the cutest part was a day of the week pill container, each day filled with little candies ~ what a great idea!!! Candies as medicine: definitely my kind of person!

It was another wonderful experience, and the best part has been reading all the posts from everyone: it's a real community. It's so nice to feel like a part of something that special.


Yet another special community welcomed me this holiday season: the B-List Bloggers let me join in their Holiday Ornament Exchange. I got the lovely
Green 3, who I sent her very own Christmas Kelly, a Rubix Cube keychain, and a homemade ornament of a picture of her family, taken on their Las Vegas trip this year (which Blogger doesn't want me to show you). I read through her archives, got to add yet another name to my bloglines account.

And my B-List Blogger did an A+ job of researching me a bit, because she sent me a Christmas Kelly to add to the parade! The person who sent me the Kelly (and a very nice note!) was Jannie Funster. Thank You, so much Jannie! She was not a duplicate Kelly, and has a place of honor in the parade.

I still have one more holiday item to wrap-up, but it's going to have to wait.


(Still not talking about the flare: we do not acknowledge the flare ... except to say... Ouch.)

December Perfect Post

Got some links for you, since I'm still on the DL.

Here's the roundup for December's perfect Posts

For Laughs:

Mom 101's Oy Tannenbaum

Giant's 10 Best Fake Movie Trailers of the Year

The better titles for the last Harry Potter book, over at Violet's Quill

Jennie's rant about Christmas Music I hate that stupid shoes song too.


More seriously, I'm in love with just about every single post over at The Happiness Project . Her idea of working towards happiness is a real goal, and that you need to put it on project status? Genius. So often, I'm stuck doing things that make me unhappy, and forget that there are things I can control to make myself happier. Must remember!

But my perfect post award goes to Melissa, over at Suburban Bliss, for her Christmas Lesson post.

Her striking honesty, her fearless ability to take stock of her own strengths and weaknesses, and the fact that she usually makes me laugh while doing so make her a must read to begin with. But this post, and particularly this line:

I thought I felt like a shitty mother because she was afraid of school but wow, I found a new level of feeling like a shitty mother when my daughter told me she was sorry she was afraid.

are remarkable. I know we all have those days, where the kid's hang ups are getting in the way of our busy schedules, and that it can be soo hard to remember then, in those moments, that what we do or say will leave a lasting impact. When Youngest Nephew told me he was afraid of my "mean voice" it made me feel like I was the worst aunt ever. EVER. And made me seriously reevaluate almost everything about the way I communicate with him. That's one of the wonders of the blogosphere, that you can connect with people who you've never met, but somehow share experiences with. Melissa's post was, for sure, this month's Perfect Post

Housekeeping....

As the Old Year winds down and the New Year inches closer, I still have a million things I've got to do, and no real energy with which to do them. Right now, it's hard to think past the flare, which I don't want to think about anymore. Instead let me just do a quick catch up, so all you lovely people won't think I've forgotten you:


- Dear Blogger Ornament Exchange-r, I just wanted to let you know that I received my Ornament, am very pleased with it, and will post on that topic as soon as my flare lets up a bit.

- Ditto Secret Santa players: I have been extremely lucky this Christmas to have been nicely surprised more than once, by quite a few people. It is a wonderful feeling.

- I was also able to surprise a few people myself, and that's an amazing feeling as well.



The telling of these stories is important, and should wait until my brain is clear(er) and I can tell them correctly. Thanks for your patience.

That said, I just want to wish everyone the Very Best in the New Year.

And thank you all for sharing your time & your hearts with me this past year.

Does anybody else

have absolutely no idea what day of the week it is?

Just me?

Oh well.

Until about an hour ago, I was sure it was Sunday. And then when I went to watch what I thought should be on the t.v., lo and behold... not.

So, it's Saturday, people! Are you doing anything fun?

I'm resting, reading all the magazines I stockpiled before Christmas, knowing some downtime would be required right about now. It's been a long strange week, my friends. A long, strange year, at that. I'm looking forward to a new ~ hopefully better ~ one.

Finishing up the old...

Here's the last half of my year in pictures: