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