Connections

Connections
Originally uploaded by bbackprple.

Tracey was talking about connections today, and this is the shot I thought of. A reflection of Baby Girl in her daddy's picture. I think it could use some photoshopping, eventually (it's a little grainy). But I was so proud to get this shot... it's not like she stays still for very long, you know. Don't forget to visit Tracey (who's post is amazing) and other My Best Shot Mondays!

Things I think people should stop saying (pt 1)

I'm going to go ahead and declare a moratorium on the phrase "... the last, great hurdle we have to overcome." Because, too often, people are only seeing the hurdle they are involved in, and don't look over to the other lanes, where there's hurdles aplenty left. Racism, sexism, ableism, homophobia, antisemitism - unfortunately, none of these is the last problem our society has left to conquer. Sure, there's a lot of crossover, and a win in one column can often add points to all the others, but I have to say that I just don't see us solving all of our society's ills anytime soon.
So let's accept the fact that we've all got a lot of work to do, and stop pretending that our one particular fight is the only fight left to fight.

5 questions

Maya's Granny asked me my interview questions for this meme, but I've been a bit slow in answering. Here's what I came up with --->

1. If you could choose a super power for a day, what would it be and how would you use it? Super power for a day, huh? Well, did y'all catch this week's Heroes, where Linderman went around healing people? I might like that. Get together with whoever could fly and scoot around the world healing all the ills that need fixing. Yeah, that'd be cool.


2. What is the most important thing you look for in a friend? Humor. Compassion and understanding. Ability to listen, not just talk. Honesty. Kindness.

3. When you think about yourself, what one thing do you hope other people notice about you? Wow... this was a bit harder for me to figure out than at first glance (I guess I spend too much time thinking about the things I hope people don't notice). But I'd hope they would come away from a discussion or first meeting with me thinking that I'd listened to them, that I'd cared enough to pay attention.


4. If you replaced your entire wardrobe tomorrow, what are the colors that you would build the new one on? I am soo not good at fashion type stuff, so... whatever colors my younger sisters would suggest. (Because, honestly, they are always right about this kind of thing.)


5. What is your favorite thing that you feel silly about liking? I sometimes feel silliest for liking - & continuing to watch/listen to - children's movies & music. I'm not talking the "Wheels on the bus," but if you were to flip through my Media Player, you'd find quite a share of Disney music. Of which I would know all the words to. And I have, at certain points, used my younger sisters, and eventually my nephews as my cover... "Oh, she wanted to watch this, and I was already in here..." type thing. My love for the Muppets is unabashed, but if you also sometimes sneak in the Gummi Bears theme song, it can make you feel a bit silly.

I absolutely would love to ask questions, if anybody would like to be interviewed. Thanks again to Maya's Granny for her excellent questions!

Here are the rules, if you would like to be interviewed:

1. Leave me a comment saying, “Interview me.”
2. I will respond by emailing you five questions. I get to pick the questions.
3. You will update your blog with the answers to the questions.
4. You will include this explanation and an offer to interview someone else in the same post.
5. When others comment asking to be interviewed, you will ask them five questions

Baby Girl Laughin'

Baby Girl Laughin'
Originally uploaded by bbackprple.

Here's My Best Shot Monday shots ---> Tracey asked for some diagonals, and boy, was it hard to narrow down my choices. (I don't exactly always shoot straight, as you might guess.) So here's two shots... both, I think, are improved by the angle. You can tell that people are having some fun here. Don't forget to stop by http://picturethis.clubmom.com/picture_this/2007/05/my_crooked_best.html and check out all the other crooked shots....

SisterJ & Fiancee Laughin'
Originally uploaded by bbackprple.

May 12th is CFIDS/ME Awareness Day & FM Awareness Day: if you've spent any amount of time here, I'd say you're at least semi-aware of what all those things are. If not, you can get some facts here - CFIDS Fact Sheet; FM Facts. Also, I may not have explained that CFIDS is called ME in many non-US parts of the world. It stands for Myalgic Encephalomyelitis, and you can read more about that here. (Also, there's some controversy about whether CFIDS and ME are the same thing, and about changing the name of CFIDS to something else, but I don't want to talk about that right now. I'm just putting it out there, in case you're interested.)


Last year's Awareness Day post had a lot of pictures - t-shirts (available at Cafepress.com) that said something significant about CFIDS or FM. This year's post has been harder to write: Coming so close on the heels of Blogging Against Disabilism Day, I don't want to repeat too much of what I've just said, but it's been difficult to figure out what exactly I [i]do[/i] want to say.

So here's what I think I'm going to do. I'm going to put a couple of quotes up, mine and others, and other than that, I'm going to devote this post to saying thanks.

Thanks for all the understanding, compassion, and welcoming I have felt here in this online world.
Thanks for taking the time to listen, to ask questions, to try to understand.
Thanks for sticking around through all the "flaring, flaring, God this is so boring, but I'm still flaring" posts.
Thanks for thinking twice about whatever preconceptions you may have had about CFIDS & Fibromyalgia, or people with disabilities.

Thanks for being so supportive & caring & thoughtful: Isolation is a very serious issue, particularly with diseases like mine, where I can go (and have gone) months without seeing anyone except my family and my doctor.

This blog, when I started it, was just a shot in the dark... the hope that there would be people out there who would hear me. I cannot fully express how grateful I am that I have found just that.

So... with all my heart... Thanks.

"But the illness that took over my life... actually erased some patients' fingerprints.... It sanded down the whorls of identity. It made us perfect thieves and perfect victims. Perfect to ignore, easy to blame. Digit by digit, person by person, the erasure deindividuated the very hands that symbolized our humanity, our vote in freedom. But the fingerprints hold a paradox. The smooth fingertips - they seem to tell so much. They seem to indicate, that nothing is there. But what is bes is what they cannot tell. They remind of of what has been taken away. ... CFIDS, an illness that seems - like a criminal suspect - to erase its own evidence." Peggy Munson, Person with CFIDS (PWC)

"This illness is not the result of some personal defect. I am certainly not enjoying myself here. I might be stuck in my house, but I will not be silent and I will not be ashamed and I will not be ignored. I will talk about why I am stuck here and keep talking until something gets me out. Jennifer Robinson, PWC

"Chronic illness means never being able to say, "This is for sure ..."-- Ricky Buchanan, PWC

"I am just drained. I am tired of having to fight every day, and tired of not knowing what to fight. Tired of trying to accomplish something, and having yet another day pass to find I’ve accomplished nothing more than making it through the day. Tired of having to justify my self, my thoughts, my actions, my non-actions, my illness, my good days, my bad days, my life. To anyone – including myself. I am just so weary of even having to think about myself and my health, and all of the things that are wrong with my body, my spirit, my life, and having no idea how to fix any of it. I am just so sick of having every little minute be full of pain and grief and anger and hurt and fear and exhaustion, that I don’t know how I’ll make it to the next minute. I am tired of wanting to cry. I am tired of crying. I am tired of being angry at myself for needing to cry, and just of everything. I just want a rest. A break. And I don’t know how to find it." NTE, PWC

"...love that word effortless ... I want to be effortless someday, do something, anything, effortlessly..." -- Jodi Bassett, PWC

“I remember the night I lay on my bed and weakly turned tear-filled eyes to my husband who lay beside me. “I’m going to die,” I said, “and they aren’t going to know what is wrong with me.” Eva Marie Everson, PWC

"A suspicious public, continually trying to prove myself, and inner battles with self-doubt: an exhausting mix, even for a healthy body! But that is not all... add the fact that the government - our government, the one we pay taxes to, the one that is to serve and protect us - is at best guilty of negliegence and at worst guilty of purposeful betrayal. They denied my illness existed for years and then, with chilling premeditation, illegally misspent funds for medical research that could have helped to give me back my life - years ago. Years ago! ... Like the major struggle of my life was a nonissue." June Stein, PWC

"The thing I hate most about being sick is that it's like a roller coaster in the dark. Some days I will feel real good and think that everything isn't so bad, but then right after that something really bad will happen and I feel like maybe I'll never get well."-- Ross Moran (aged 14), PWC

"No Alcatraz is as inescapable as one’s own debilitated body.” Peggy Munson, PWC


“While I was lying there, I began to believe that we had struck the deer back in 1987, that he had come through the windshield and killed me, and that this was Hell.” Laura Hillenbrand, PWC

"Please be prepared to love and accept your child in whatever diminished state he is in, and try to give him reasons to love his life as it is now. This is not a disease you can push through, or conquer by sheer willpower, those things in fact make you worse. So please, don't push him to act well. Just love him and care for him, and be glad that he doesn't have something that will take him from you. Everyone should read this again, and think about each phrase. Then substitute the word another word for the word 'child'. Try 'wife', 'husband', 'SO', 'spouse', 'friend', 'lover', or whatever fits. How about adding 'yourself'. That is often the hardest."-- alt.meds.cfs

"I hate how people who knew us when we were well can't stand to be around us because it makes *them* feel vulnerable and mortal."-- Krasota, PWC

"There will be times when you want to scream and rant and tear your hair out at the unfairness of this damn disease, and there'll be moments where you'll see something beautiful in life and simply be glad to be alive." -- Margie Heinrich, PWC

Birthday Boy

Birthday Boy
Originally uploaded by bbackprple.

Here's My Best Shot Monday... I'm kind of wiped, still, so I don't have much to say, but here's my cutie, zooming his new toy.

Don't forget to head over to Picture This, for everybody else's shots.

Let me just say

How wonderful so many of the BADD posts were. And how much I appreciate all the comments you've left here, on my BADD post. I hope to spend some of tomorrow writing my replies, and, hopefully, winding my way through the blogs I missed (Every time I go back, there's more new ones!) It's just been a long week for me, and, while I have a lot to say, I have little energy to say it with. But I'm aiming for tomorrow, when the house should be quiet and my brain can go as slowly as it wishes.

Rest Well -

Blogging Against Disabilism Day

“You know, it’s so funny. What keeps any of those people in that dining room from being like me is just a virus, a thing in my body over which I had no control. Why did I get it and not them? Fate. Circumstance. Luck. But I have a place on the earth, just as they do. I have rights.” Elizabeth Berg: We Are All Welcome Here


Today is Blogging Against Disabilism Day, and it’s a topic near and dear to my heart. When you finish here, please go over to Diary of a Goldfish and check out some of the other, bound-to-be wonderful posts.

Disabilism (or ableism, depending on your preference) refers to discrimination on the basis of ability/disability. Like any form of discrimination, there are a million different ways that this prejudice can be expressed. I’m going to try to focus on just a few of them.

First, there are the more overt examples of disabilism that I have been subjected to: The kind of things that most people would recognize as a form of exclusion based on my illnesses &/or inabilities.

What sorts of things have I been denied, recently, on the basis of my disability alone?

I have been denied proper medical care and my dignity: Let me just say that having a ramp does not make your office accessible. Having a ramp is nice, but if the doorway it leads up to is too narrow for a wheelchair to fit through, it means squat. If, once I manage to crawl through your doorway while someone else pushes my folded-up chair, I still can't get into an actual exam room? Then your office is not accessible. If I have to sit next to the trash while you "clear out a little space" in the HALLWAY for us to conduct our exam, your office is not accessible. If you have to skip over the "not so important" parts of the exam because someone is trying to get by and you want to "move things along," then your office is not accessible.

I’ve been denied my home & my health (by The PUS and by the city), a total of 4 times in the past 9 months.

I have been denied the ability to make my own choices & to be regarded as whole/grown-up person – “I am in the mall. I am waiting to the side of an aisle for my sister to catch up with me. A woman that I don’t know is suddenly at my side – “Can I help you get in there, sweetie?” Grit teeth re: sweetie. “No, thanks, I’m just waiting.” “Oh, it’s no bother. I’ll just move this, right here. I don’t know why they can’t make these places so that everybody can fit.” Yes, I agree. But… “No, thank you. I’m really just waiting for…” “Now see – that was quick, wasn’t it? Now I’ll just… there!” Did you really just lift the back of my chair up like a shopping carriage? And almost dump me on the floor? I know you didn’t: “Ok, you need to stop that, please. Because…” “Oh, I just know it: the angles in these places! But they don’t think about that. There, you’re all set!” No, I was all set before you came along and decided for me that I should be up over this bump, sandwiched in between some clothes. But thanks, really, you were such a big help. Now I know you aren’t standing there waiting for me to say thank you, are you? Sigh, I am such a wimp: “Well, I can’t tell you how much I appreciated that –“because I didn’t at all – “but really, I..” “Not a problem, sweetie.” And off she bustles, honestly thinking she’s done her good deed for the day. While I am now stuck between the clothes, over the bump.”

And, sure, some of these examples might have gone differently if I could have been more assertive (trust me, these are lessons I have definitely taken to heart), but the fact is that I was just going about my day, and my experience was directly impacted because of my disability - and other people's disabilist attitudes.

But, more often than not, for someone with illnesses like mine – chronic, incapacitating, but in many ways invisible – many of these acts of degradation & discrimination are more subtle.

“I've been lonely, I've been cheated, and I've been misunderstood, I've been washed up, I've been put down, and I've been told I'm no good” A Change In My Life

We talked before about my soon-to-be Sister-in-law and her "Suck It Up" comment: but this is just one example of the more subtle, more emotional, but no less damaging types of disabilism a person with a disability can be subjected to. I have had people – close to me and close enough – tell me that I am lazy, weak, faking or depressed. I have been told more than once to ‘just start moving’ or to ‘keep moving till I feel better.’
On my worst days, I feel the guilt of being unable to do so, the fear that I am not really trying, the shame that I just keep failing.

“You know this is what our culture tells us, so much: It’s really a question of mind over matter. You can overcome any sort of weakness through force of will. If you can find whatever the emotion block is, that’s all it takes. It can be very hard to overcome that whole notion.” Paula Kamen, Head Case, on Salon.com

“I’ve never gotten better, no matter how hard I’ve tried. I’ve been ill 7 years. I used to have only 4 symptoms: Now I’m up to 25. I’ve run out of fuel. A million times I’ve tried to resurrect, to no avail.” Mayra Lazara – Prisoner of CFIDS; Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome


Having chronic, invisible & controversial diagnoses also makes you aware that there’s a hierarchy of ‘acceptable’ illnesses. Having to divulge the source of my disability is sometimes frightening: I’m afraid to see the doubt in their eyes if I mention CFIDS, afraid of what they think of me now that I’ve told them, afraid of having to – yet again – defend myself & my choices about an illness that I have no control over. I’ve often thought it would be easier to say “Cancer,” because you know what response you’re going to get then: No one’s going to look at you like you’re crazy; no one’s going to say you should exercise your way out of it.

If it’s someone I’m just meeting, I probably don’t explain, specifically. I usually don’t, at first meetings, launch into my list of diagnoses - People tend to find it off-putting, and (much shier in person) it’s just not in my nature. If someone I don’t really know asks me what’s wrong with me – and they often do - I tend to stick to the vague – “immune system issues, blood-pressure issues, a form of arthritis.” These are all true, but they don’t feel true. It makes me feel guilty that I sometimes just don’t have the strength to say “It’s CFIDS/FM/POTS” and deal with whatever reaction comes up. It feels as if I’m denying a vital part of who I am and betraying all the other people who are suffering from these horrible diseases and can’t speak up.

Some of the more negative responses I’ve dealt with have been from people who didn’t really know me. A student in an abnormal psych class in college, who brought up CFIDS when we were discussing psychosomatic illnesses. A cousin who calls me Stumbles and says things like “If you stayed with me, I’d have you outta that chair in a couple of days.” Although he means these things in jest, I don’t always take it that way. (And have responded to the question “So when are you going to start walking again, and stop laying around all day?” with “Well, about the same time you re-grow your hair and start to grow yourself another testicle, as the amount of control you have over that is equal to the amount of control I have over my condition.”)

My siblings have probably been the ones most affected by, and most conflicted by, my illnesses. They're also the most likely to hurt me with their discrimination. For a long time, one of my younger sisters – only 8 at the time I fell ill, - felt I was faking the whole thing. To her, illness was something you caught and got over: Why didn’t I get over it already? And for quite a while after that, she continued to think that I was using it to my advantage – using it to manipulate things into going my way: we shared a room, and she couldn’t listen to her radio at night or when I was resting, she never had the room to herself, as I was mostly confined to bed, everything seemed to work to my advantage. (The fact that I was too sick to enjoy whatever advantage I may have had never seemed to occur to her). She was very vocal in her dislike of me and my illness, and there continues to be times when she is completely uninterested/unsympathetic about my situation.

Being ‘the sick one’ sets me apart in my family & with my friends, in a lot of ways, and there are many, everyday discriminations I face: Parties (or lunches or movies, shopping trips, conversations) that you don’t get invited to any more (never mind the fact that you most likely couldn’t go anyways). Ones you are invited to that include ‘just a few steps’ or women bathed in perfume. Deciding to get a cat or a dog, even knowing it means I can never visit your house. All these items illustrate a pattern of exclusion, even by those closest to me. Often, the impulses behind the exclusions are good – not wanting me to be disappointed that I’m missing out on something, for example – but they still serve to set me apart from the ‘normal’ people, and further my sense of isolation. *Just a note here – my family and closest friends also go out of their way to include me in things & make special arrangements for me when necessary. For today, though I’m only discussing the times (thankfully less and less frequent) that doesn’t happen.*

“Damn it all, I wish he (her husband) would read and understand. I am so tired of pleading for consideration. It is humiliating to have to beg all the time. To exist at the convenience of others. And I am expected to just put up with this quietly.” Phyllis Griffiths – Valley of Shadows: Journal Entries; Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome


I thought about continuing on, talking some more about how so much of the experience of illness is shaped by people’s preconceptions about what illness really or means, and how so few people have any understanding of my illnesses at all, but I want to make sure you all go read some other posts. I’ll just finish by saying this:

Living with a chronic illness (or any disability) is hard. It’s an everyday, everyway kind of struggle. And prejudice and discrimination and mistreatment only serve to make a difficult situation worse. There’s no need for it. There’s no excuse for it. If you don’t know enough about something that someone is dealing with, ask questions. Read about it and learn. Don’t assume that they can or can’t do something. Don’t assume that they’re unhappy just because their sick. Don’t assume that one sick person is like another. Don’t assume that you’re helping them when you’re really not. Just don’t assume. The only thing you can assume is that a person with a disability still wants to be treated like a person.
And it would really help us out if you could do that.

My favorite guy

My favorite guy
Originally uploaded by bbackprple.

Here's my MBSM shot. This week, Tracey asked for dedications. So, here's to my favorite guy, who stole my heart 7 years ago this Wednesday. He's had a tough year: getting a new little sister, moving twice, going to a new school, and not coming to Grammy's house everyday anymore. But he's still a firecracker - sweet and silly, strong and genuine. I miss him everyday, and hope he knows how much of my heart he has. Happy Birthday, buddy! Love, Auntie NTE

Photo-biography

Bethieclaus had a post (a while back) with her autobiography in Google images. I liked it so much, that I decided to do mine. Only with Google & Flickr, because, well, because I wanted to.

Here's what I'm all about, I guess:
My age at my next birthday:

twenty-eight years complete.....
Originally uploaded by boristheblade.

My Favorite Color

purple haze
Originally uploaded by haanii.

My Middle Name


Source - DizzyScorpio







Last Thing I Ate

Blueberry Muffin
Originally uploaded by Joshua David.

My Bad Habit


Source

My Favorite Fruit or Vegetable

Source

My Favorite Animal

Cuddly Dog
Originally uploaded by IndiepoprockJesse.

Town I Live In

Originally uploaded by musicmuse_ca.

My (past)Pet's Name


My Current Crush


SourceSource

My Occupation

... super awesome aunt
Originally uploaded by massdistraction.

My Birth City

Bridge over the Malden River
Originally uploaded by senorton.

My Favorite Song at the Minute



Source


Please play along, if you'd like.

BADD, to come

On this Tuesday, May 1st, please consider taking part in the 2nd Annual Blogging Against Disablism Day. Hosted by Diary of A Goldfish, the goal is to raise awareness about disability and disablism/ableism (discrimination on the basis of disability). You don't have to be disabled to participate; Here's what it's all about:

"Last year on 1st May, with the invaluable help of Lady Bracknell and with the support of many other bloggers, I hosted the first Blogging Against Disablism Day where almost a hundred and fifty people joined together to write about disability and rail against the discrimination that disabled people continue to face. Both disabled and non-disabled people wrote about all manner of subjects, from discrimination in education and employment, through health care, parenting, family life and relationships, as well as the interaction of disablism with other forms of prejudice.

Everyone is welcome to join in with Blogging Against Disablism day, disabled and non-disabled, as long as you wish to blog against the discrimination that disabled people experience."

You can find out more about it at the link above ~ and be sure to check back Tuesday for my post, and all the other BADD posts: I can promise you, at the very least, you'll have a lot more to think about.

Blogger vs. Me

Hey all:

In the course of trying to label some of my older posts, they're showing up in people's feed-readers as new or updated. Sorry about that!

I am, in fact, flaring; but nowhere near as badly as last March's flare. THANK ALL BENEVOLENT BEINGS, because just reading that makes me want to throw up. Today's flare is much smaller in scope, and caused by trying to do too much earlier in the week. It still sucks, but I only have to read that post to know how much worse it could be.

Awesome Mom - Thanks so much for the well-wishes! I definitely need them today!

Sorry to all, about the mix-up... can't have you thinking I'm worse than I am, since where I am is bad enough. No borrowing trouble!

Thanks again - & if a Halloween post or two pops up, it'll be a nice little look back through my archives, since most of you weren't here then.

So, there's this contest

Over at Adventures in babywearing, about blogging without makeup. Since I can count on one hand the number of times in the past year I've actually worn make-up, I should be a shoo-in. But ... I also don't take pictures of myself. (Hello? That is why I have the camera... duh! Oh, and also? I'm supposed to be mostly anonymous: my picture might give things away a bit)

Since she's so gracious, Stephanie made an allowance for those of us who wouldn't feel comfortable posting our pictures. We only have to talk about it, link y'all back there so you can see the purty ladies. (Seriously? If they look that good without makeup, I'm thinking the whole cosmetics thing is probably a racket.)

So head on over there and check out some brave and beautiful ladies.

My Best Shot Monday

Originally uploaded by bbackprple.

It's Monday again, and that means Tracey, over at www.picturethis.clubmom.com, has her best shot up. (I think it must be a double exposure, how about you?)

Here's my best shot from this past week: something that I spent entirely too much time tinkering with in Photoshop. The picture itself is as it was (OnlyNiece in the foreground, her parents in the back), I just played with the effects a bit. I thought it came out pretty good.

Play along, if you want... it's always something I look forward to.

A few, much needed laughs...

Went searching through my CDs yesterday, for this song. It's one of those songs that just fits a certain mood. With all the terrible things that are going on, with the whole world feeling heavy & restless, this song just fits. I haven't ever heard it on the radio, so I thought I'd share the lyrics here.


Live at Five and CNN
keep us all abreast
of breaking stories that can tend
to make us anxious and depressed.
Problems with no answers
hang on like some chronic cough.
And every day some brand new issue
rears it's head to piss you off.

Bad guys win.
Optimism's wearing thin.
Things are spinning out of control.
Cynicism's all the fad.
World events could make us mad
as hatters.
Almost every day
some underpinning slips away.
These aren't laughing matters.

Time bombs tick.
People keep on getting sick.
And a nickel's not worth a cent.
Widckedness and greed abound.
Just as peace is gaining ground
it shatters.
Hate is here to stay,
and justince goes to those who pay.
Friend, these aren't laughing matters.

The truth is scarrier by far
than anything that Stephen King could write.
The stories in the paper are
the daily small decline and fall
spelled out in black and white.

Oh, what to do, what to do?
how to take a brighter view
when your noodle's totally fried.
Human spriits need to be
leavened by a little levity.
So take those blues
and bounce them off the wall.
Keep your humor please,
'cause don't you know it times like these that
laughing matters most of all.

The song is sung by Bette Midler on her Bathhouse Betty CD. (You can listen to an exerpt at that link. I don't know how to add a mpg or else I'd put it up here).

And if you need a little cheering up let me suggest -

Some Monday Morning Muppets

Last night's episode of House (maybe you taped it, saving it for later? Lucky you, it was excellent!)

Busy Mom's list of things you can't keep in stock once you're a parent


Just trying to make the air a little bit more breathable.

Messy?

Messy?
Originally uploaded by bbackprple.

Here's my Best Shot Monday pick... it's SisterJ, circa 1983. She always did love a mess.


How's your week going? It's still gray and gloomy aqui, and I'm having a bit of a flare (small, thank God), so I'm just keeping it very low key (Ha! as if I have a different speed.).

One simple moment

So, let me tell you about how I met my best friend.

My (eventual) college roommate and I lived in the same dorm our first semester freshman year, but never really connected. Might never have connected, if it weren't for one simple, life changing moment.


My first semester in college was abysmal: I was hideously uncomfortable with my roommate, who cried in Korean to her mother in California, skipped classes, smoked pot, & bathed in perfume. (This is not an exaggeration: I lived with her for 4 months, 10 years ago, and I still have things that smell like her. Her perfume of choice was very old-lady-ish - a combination of dying roses and overripe fruit. The whole dorm complained about the smell, and here I was, hypersensitive to smells and stuck with someone whose nose had obviously stopped working years prior.) I knew a few of the girls in my dorm, had talked to some of them in/after classes, but I hadn't really connected with anybody - I was the sick girl, the girl in the wheelchair, who went home every Friday morning after her 10:00 class & took naps during the day. I was not ignored, but I was still, very much alone.
My illness was in a different stage than it is now, but still, it overwhelmed me - I could only walk a few steps on my own, and the wheelchair went from being an occasional help to an everyday necessity. Adding that awkwardness to my (real life) shyness and an inability to 'blend,' as I plowed through that first hellish semester, I was pretty sure college wasn't going to be for me.
It was too hard - not the work per se, but the effort of getting to class, of trying to compensate for my illness, of putting up with my roommate. It was just too much. Even though my grades were good (OK, stellar), I had decided that over Christmas break I would tell my parents that I couldn't come back in the spring. I would disappoint them - and myself - because I just couldn't manage.


Then one December night, in the midst of finals and all the partying that accompanies the end of any semester, I came back from the bathroom to find that my roommate had doused herself with so much perfume that I couldn't go back into our room. I mean, I couldn't even open the door to the room.

With my keys inside, and my energy on empty, I knew the dorm lounge (downstairs & an elevator ride away), was out of the question. So I folded up the chair, and sat myself down in the slim hallway outside our room. I was supposed to be studying, but I had no books. I had nothing except my toothbrush, and I didn't really care.

I was Done - Capital D - Done. I just sat there on the floor, closed my eyes and rested my forehead to my knees. And I stayed that way for hours, just sitting.

People in the dorm passed me, asking if I was OK or wondering if I'd locked myself out.

"Fine," I said, "just thinking."

Somewhere in the second hour of my thinking, one of the few tentative friends I'd made, came bombing down the stairs and spied me on her way out the door. When she asked, I told her I was thinking, then waited for her to continue on her way. Instead, she took off her coat, and slid down the wall to sit next to me: "I've been thinking too," she said, "And I've got an idea for you."

She told me that a lot of the girls would be switching roommates after the break: this one was moving in with that one, some were transferring to live with friends they had made in other halls.

"And there's this girl," she said, "on my floor? She's in our English Comp class - Ms.S? Well, she's the absolutely the nicest person here, besides you. I think you should talk to her about moving in with her next semester."

And, in that one conversation, she changed my life.

Even though it was totally out of character, the next day, I went up to Ms. S's room, and introduced myself: She knew who I was (wheelchair girl on a small campus, everybody at least knew my name) & we talked about our crazy English Comp teacher, who rang little chimes at random moments during class. She said how she had a boyfriend at home who she talked to every night before bed, and would that be a problem? I said I could sleep through just about anything, so no, it wouldn't matter to me. She was usually gone on the weekends too, to be with her boyfriend, so she didn't think it was odd that I'd go home just to rest.

I told her about my smell issues, and she told me that she thought my roommate smelled so bad it made her want to throw up even though she lived two flights up.

She told me that her then-roommate would just take things - her drinks, her printer paper, her shoes - without asking, and that she couldn't stand it. I told her I had four sisters, so I knew how it felt.

We didn't really talk too much, but we both decided to try it out when we came back in January.

It was, without a doubt, one of the smartest decisions I've ever made.

Without Ms. S, I would not have graduated from college. Hell, I wouldn't have even made it through a whole year. By the end of our first semester together, we were friends. By the end of our college years, we were best friends. We've been there for each other through finals and projects, funerals and weddings and her daughter's birth. Her miscarriage, my hospitalizations. I typed papers for her, while she made sure that I ate. She lectured our friends when they stopped including me in things, I reassured her boyfriend when she went a little wedding-wild.

Our friendship is different now, since we're at different stages in our lives, but one phone call is enough to get her here, enough to make me pack a bag. (She totally agreed with all of you, btw, about my Sister-in-law's stupid comments: she suggested I might want to run her over and then tell she if she felt like "getting over it.")

I was sitting here today, stuck in the gloomy weather, mired in my gloomy mood, trying to snap out of it. Trying to force myself to think of some of the blessings in my life, and this story came back to me:

Me, sitting there on the floor, knowing that I would have to give up on yet another dream. Preparing myself for the conversation with my parents. That feeling of "I just can't do this anymore" was a physical weight in that moment. The loss and the confusion and the "What now"s just swirling in my head.

And then my friend came down the stairs.

Her sitting down next to me, just then, saved me.

It was exactly the right thing, at exactly the right moment.

And I'm glad I remembered it, glad that I had it in my heart to pull out today, just when I needed it.

The exact right thing, at the exact right moment: Again.

Hey, Jealousy

I seem, for the moment, to be stuck in a little bit of a low cycle. I'm feeling every one of my losses very keenly.

And there's no real reason except that everybody else is having a life. Is living their lives.

And I am not.

(Which, I know is not technically true and all. Just let me wallow for a minute, won't you?)

My youngest sister (SisterK) is making her first transatlantic journey, spending her spring break with a friend in Germany.

I have never really left New England.

One of my closest college friends, who I've grown apart from because time keeps seeping in between us, has just safely delivered her second baby. The baby is beautiful and healthy and my friend is fine and well. But I haven't even been able to meet her older boy - who will be three this year.

And my brother's baby reaches for me first, lights up when I come in the room, has learned how to sign "more" and "eat" because I've taught her. But then she goes home, far away now, with her older brother who I've loved and taught to read, and taught him his manners, and played in the mud with.

And I am here, still. Alone.

And my babies, the ones I've dreamed of my whole life? They're on hold - just like most everything else I dreamed of.

And SisterJ has found a new job, and is really, honestly in love with her fiance, a man of substance and honor and great kindness.

And SisterC is in a horrible relationship, but she's decided to make it work. Because it means so much to her to be on her own.

And I am on my own, in ways that none of them would understand. And it hurts.

So, I'm wallowing a bit. And hating myself for it - for turning all these blessings in my life into pinpricks in my heart. (Because I do know just how lucky I am to have all these wonderful people & experiences in my life... just not so much, today.)

But I never said I was perfect, so I guess we'll all just deal.

There's some rockin' going on

Big Brothers Rock!
Originally uploaded by bbackprple.

Over at my Flickr account. Here's today's "MBSM" shot. As always, check out Tracey over at Picture This for more entries!

Sweetness

Sweetness
Originally uploaded by bbackprple.

I made it! I told you about Tracey's themes... I'm squeaking in here at the end of the week with the "Sweet" theme. Although she went with the candy-kind of sweetness, I'm sticking more towards the cuddly side.

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!

------------------------------------------------------------------------------
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!



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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).")