Saturday, March 31, 2007

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.

Thursday, March 29, 2007

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!

Monday, March 26, 2007

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

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.

Sunday, March 25, 2007

#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

Thursday, March 22, 2007

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!

Tuesday, March 20, 2007

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!

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!

Monday, March 19, 2007


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.

Sunday, March 18, 2007

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.

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.

Tuesday, March 13, 2007

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."


"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!


Monday, March 05, 2007

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.

Friday, March 02, 2007

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.

Thursday, March 01, 2007

Here's my February Perfect PostA Perfect Post – February 2007 : 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).")