Saturday, September 30, 2006
Just found out The Bitch Upstairs (tm) has ripped up the carpet on the stairs to the third floor, and has decided to paint and the recarpet.
Yes, you heard me right: Paint. And then recarpet. I know absolutely nothing about recarpeting, whether or not they use, say glue or something like that that would have an odor and/or fumes.
But Paint? Yeah, I'm pretty damn sure that has some fumes. And odors. And neither of those things are things my body is capable of handling.
It's not as if this is new information, either. The Bitch Upstairs (tm), you might remember, figured it was worth almost killing me to repaint the porch because her daughter needed it to look nice for her graduation party. In addition to paint, her arsenal includes the dreaded Mothballs & so-called Air Freshners. All told, in the past three years or so, I've been forced to leave my house about 5 times, sometimes for longer than a week because of something she has added to our environment without thought or care as to how it affects my body.
Not that I'm surprised. Because, she is, afterall, a Bitch.
And my grandmother? This grandmother? Yeah. She's all "well, I TOLD her not to." No. You don't TELL her, because we know from experience that she doesn't give a shit about what you say: You yell and scream and walk off in a huff, & then she does it anyways and I wind up in the ER or my other grandmother's couch again.
You say "Listen Bitch: This is my house. These are my steps and that is my granddaughter. You make one move toward any form of paint, and you'll find your bags out on the street."
I guess, sometimes, it's just too much to expect people (you know, your family???) to stand up for you.
So, who knows what tomorrow will bring? Maybe I'll be posting from the Hilton?
(Also? I couldn't find anything that was "comfy" but not "sleeping." And sleeping is coming up in a few weeks, so I'll just save them for that. I do plan to try to do a little touring, though, so hopefully, I'll be visiting a lot of you.)
Anyway, here's something that I realized in my two weeks away:
I can do without e-mail, blogging, etc. But I don't want to.
I like that I have a place where I can write whatever pops into my little head.
And that there are people out there who are interested enough, or bored enough, or who care enough to read whatever little thought pops into my head.
That there are people that I care enough about that not checking in with them for over a week feels wrong. I need to know what's on sale over at Want Not that I didn't even know I wanted. I need to cry over Noah's birthday, because Amalah was the first blog I got addicted to and I can't believe that I've been watching (e-stalking) their family for over a year already. I need to hear that people have been living their own lives, and doing their own things, and still care enough about me to check in every once in a while.
In short, even though I wish I knew more about html, and that I had more time and energy to comment and update, I'm so glad that there's space in the blogosphere for a partial broken, sometimes nonsensical chica like me.
So, thanks for having me. (And you can be pretty sure that I won't be stuck in mushy-post mood for too much longer.)
Tuesday, September 26, 2006
I am feeling much improved, as far as the biopsy goes. In fact, if I had waited another day or so to post, I might have thought I'd imagined the whole "intense-pain" of the first few days. The Fibro-Flare is on it's way down too, thank goodness. So things are looking up.
I had all these posts planned for the past two weeks:
- My one year blog-aversary (how to spell that??) and a brand new blog design
- A post on banned books week ---> Which, hello? Books should not be banned. The End. I have read some H.O.R.R.I.F.I.C. books, books with no plots, or too many characters. Books with disgusting and lurid details about things that I wish I didn't know. Books I wish I could erase from my brain. And yet, if someone else wants to read them (why, oh why?) they should be able to.
- An update on my crazy family
and, as is always the case, I had about 62 different topics pop into my head while I was recuperating. Do I remember most of them? Of course not. But a few of them managed to stick with me, so they'll be up soon too.
I hope to be back, full force, this week. And can't thank you all enough for caring, for checking in, for coming back.
Tuesday, September 19, 2006
The biopsy itself went wonderfully: sugar-cube-o-muscle removed quickly, easily and with no complications. The incision is about 3 inches long, and I have a bruise the size of a dessert plate on my leg (I bruise beautifully, BTW: I always manage not to discriminate against any color in the rainbow.)
The after effects of the biopsy are not as easily managed, however. I have severely underestimated the amount of work my right upper thigh does on any given day (Hello sitting. And turning. And also bending. Or stretching). And now that it is unusable, my left leg is not happy to pick up the slack. Also, the constant shifting that my regular pain levels require only amps up the whole "muscle with a piece missing" pain. Enter the dreaded FIBRO FLARE. It is dreaded and deadly. The pain pills are having a hard time deciding where they should go, and mostly decide to float around aimlessly for their entire worklife.
So, my brain and body aren't exactly working at any specific capacity...Unless there is a specific capacity labeled "Holy Shit this hurts and why did I let my doctor talk me into doing this."
But I'll be back when I can, and (given the fact that my family, as a whole, has been ... less than supportive) I can't say how much it means to me that you all are thinking about me out there.
So thanks, mind Enquirers. :)
Tuesday, September 12, 2006
Biopsy and Surgery.
Yeah... Don't just sneak those in on me, when I am not looking. And certainly don't add the word "Friday" in, just for fun. Particularly in this context:" Yeah, I think we'll just see if we can squeeze the muscle biopsy in on Friday, if the surgeon can fit you in."
So, instead of the muscle zapping test that I thought I was going in for this week? (and really didn't want, but was at least semi-prepared for...)
A nice muscle biopsy.
Because the tremors (that I didn't. even. know. I. had.) are noticeably worse.
(Seriously, don't your muscles twitch when someone is holding your feet and telling you to pull your toes up towards you? I never really noticed it before, but it didn't seem odd till they told me it wasn't supposed to happen.) And the docs think it might help them to see a piece of my muscle up close.
I bet it's really pretty. But I think it's probably pretty happy where it is.
To be honest, this is not supposed to be the biggest deal. Probably won't need anything more than a local (I'll find out tomorrow), and they'll take about an inch or two square out. It should heal fine & quickly, a few days of pain, and that should be that. Except... the last time I had surgery it screwed me over big time, for a long time. (But that was a pretty major surgery and this is a pretty minor one, so I'm trying not to freak out.)
But really? I'd rather not.
Monday, September 11, 2006
I'm participating in 2996, a tribute to the individuals whose lives were lost on September 11, 2001. I'm not going to turn this into a political rant, or even my own personal memories: It's a post dedicated entirely to one person: Nestor Julio Chevalier.
Nestor, age 30 when he died, worked verifying trades at Cantor Fitzgerald in the World Trade Center. Here's what little information I was able to find out about him:
"Nestor was the type of person who was a friend to everyone. He always had a smile on his face and you could not be in a bad mood around him. I enjoyed talking to him and hanging out after work. We both worked downtown in Brooklyn. He was so dedicted to his parents and his brother, not typical of a guy in his 20's. "(From 9-11 Heroes)
And on a different tribute page he was described in this way:
"Allow me to say that truly, he was the most nicest, friendliest and classiest guy you could ever meet.
The thing that I most remember about Nestor is his easy going personality. He had a great sense of humor and a wonderful style for clothing. I pray every night to Nestor and I ask him to give me the strength to get through every day.
The New York Times did a piece on Nestor and his family shortly after the attacks, the title was "Inseperable Brothers."
Nestor Chevalier always let his kid brother, Maurice, tag along. Though the brothers were five years apart, they were inseparable growing up in Washington Heights. They worked out together at the gym, and danced to salsa at the nightclubs. They even moved out of their mother's house into an apartment of their own in the neighborhood. "We were the best of friends," Maurice said. "We did everything together."
Nestor Julio Chevalier, 30, verified trades at Cantor Fitzgerald and had planned to marry his girlfriend of nine years, Lillian Fermin, in October. He loved to tell stories about his life, often exaggerating the details for even bigger laughs. He found a rapt audience in his family and friends. Just last month, Maurice took Nestor to a salsa club to celebrate his big brother's birthday. Maurice danced all night.
"I miss him dearly," Maurice said.
Profile published in THE NEW YORK TIMES on September 25, 2001 NYT
It's the things that I couldn't find out about that I wish I could tell you all today. All those little things about him that his friends and family are still missing today, 5 years later. I've told you what I could find out about him, just by doing some searching, but it wasn't the whole of him.
He was a son,
Think about your brother: the way he points his finger at you for an E.T. touch instead of giving you a hug. The time he got you into so much trouble by convincing you that dog bones were good for people too. The way he laughs, or looks at you with one eyebrow raised. All the little things. That's what Nestor's family is thinking about today.
And now, we are too.
As we should be.
To those who were touched by Nestor in life, I can only say I am sorry.
Saturday, September 09, 2006
So, because of last week's little oops... Here's this week's post all done.
Finding pictures of food around here is very easy. Pictures of us eating probably come in second only to pictures of us sleeping. So, I had lots to choose from, and here's what I've got for you
Take 2 babies covered in cake:
Add 2 boys stuffing food in their faces:
And top of with one girl who should be old enough to chew with her mouth closed:
And that's our Food-themed SPH.
Have a great week everybody
Friday, September 08, 2006
Right now? Do I feel better? Do all my muscles and nerve endings feel anywhere near normal?
No. No, they feel like MINE. And Mine SUCK
So, instead of feeling better, like I'm supposed to be right now, I feel depressed. Fuckin Depressed.
Because you set yourself up everysingletime that this is going to be THE DRUG .
Because you read al the research, everysingletime.
You read about the side effects and the dosage you should be taking,and when you should call your doctor, and you hope.
You go to the messageboards, and you say "Has anybody tried LNOM? How did it go for you?" and everysingletime, you hear the reports: the "Oh, it helped-me-so-much-I-don't-know-how-I-lived-without-it!!!!!!!!"s, the "Oh-My-God-don't-take-that-it's-like-poison!!!"s, the "this-was-my MIRACLE"s.
And, everysingletime, you say to yourself "don't get your hopes up too high, let's just wait and see."
but you do - get your hopes up -
And, yes, it's only day one, and yes, you're supposed to wait till the stuff has enough time to kick in and flood your bloodstream with all it's pain-killing goodness. and yes, I know all this stuff.
But there's that part of you - everysingletime- that thinks as soon as you pop this pill, everything will change.
And, so far?
Every. Single. Time?
Not. So incredibly not.
So, it's not that I'm not giving up, it's that right now, after a day, I'm just sad. Sad and waiting. Waiting for all that goodness to start it's magic.
Any time now, wonder drug #217. Anytime.
Thursday, September 07, 2006
1) The fact that I cannot get this Firefox extension to work, even though it is the sole reason I downloaded Firefox to begin with.
2) Street cleaning. Seriously, how many times does the street cleaner have to go by today: the answer is Every Single Time the Baby falls asleep. I'd rather have a dirty street.
Things I care a little bit about, but am trying not to obsess over:
1) The stupid EMG that is taking over 3 months to get around to is still up in the air. Now, instead of the actual test on Monday, like it's supposed to be, I'm having yet another "consult." Whatever. Just give me my new pain pills today, and I'll do whatever you want on Monday. Maybe.
2) The fact that this new med has some pretty serious potential side effects, not to mention the fact that I'm usually not the best with new meds to start with. But, I won't worry till I have to. It could be the drug : you never know.
Things I don't want to care about at all, but keep popping into my head:
1) Somebody is cooking something on their BBQ and it smells fabulous. On the other hand, I am having rice cakes with peanut butter for my 2:00 meal. There is no justice.
2) That picture of baby Suri... All that hair! We are a buncha bald babies over here, so Peanut still has the beginnings of little wispies and that is ALL. :sigh: But I love to rub her head anyways, so maybe the no hair is good.
And lastly, things I have to go do, right this very second.
1) get the crying baby out of her crib
2) shoot the street cleaner-man.
Wednesday, September 06, 2006
Except very little happened today, and I wasn't sure what I could tell you about. But then, I took a shower. And, showering, by necessity has turned into someting intersting:
It is both torture and treat at the same time.
First, a little background about our bathroom. We live in a very old house: the bathroom door is not wide enough for the wheelchair, so I can't get in or out on my own. It's a small little room, so even if it fit through the doorway, there'd be no room for it to actually move. We have a claw foot tub, which, while beautiful, requires climbing in and out of. I cannot climb. I (obviously) can't stand, so I use a showerchair. Showering stopped being a solo effort for me about 10 years ago. And it is a challenge I am not always up for.
And the actual shower itself is like my own special form of kryptonite: with nerves that read even the slightest touch as PAIN, it's not my favorite thing. I can't handle cold water, at all, and my preferred water temperature is somewhere between "boiling hot" and "actual temperature of the sun." This searing heat zaps my brains right out of me (It's the POTS: my blood pressure is about 20/0 by the time I get out of the shower), and I can almost watch my ability to think or move flow right down the drain with the water. After my shower, my mom pours me into bed, where I have my "coma." At least 2 (and sometimes up to 10)hours of lying in bed, not moving, trying to get my body and brain to reboot.
However, the only time my body is semi-pain free is right after a blistering hot shower. If I hold the heat over the sorest muscles for a sufficent time, when I get out, all I can feel is a blissful numb tingling feeling.
Wow, with the poor descriptive word choice.
I wish I could explain it better, but it's really just that: the intense heat leaving my body, the chill in the air interacting with that heat, it's as if my body is suspended right above my normal oh-my-god-shoot-me-now level of pain, even for just those 3-4 minutes.
Of course, those three or four minutes are just a bit shadowed by the fact that I can't move, or connect two thoughts to each other.
But here I am a few hours later: brain working again, fresh and clean, talking to you nice people.
So, that was my day... what sort of intersting things happened in your life today?
Tuesday, September 05, 2006
Punkin and Peanut finally went home about 3 minutes ago, hopefully with enough time for Punkin to get a bath in before his first day of school manana. (Cheers! And I'm pretty sure it's been a good long while since I've been on the Cheers! side of that equation.)
Another first? Punkin lost his first tooth yesterday, had his first visit from the toothfairy last night ("lost" may be a bit of an understatement: "Yanked out while biting on a pillow in the middle of a tantrum so that blood poured from his mouth" might actually be more accurate, but who's counting? Oh, and $5 for the first tooth? I suddenly feel older than ever, since I seem to remember teeth = coins, and that apparently makes me saddd).
But, House is new tonight (Yipppeeee!); the baby finally cheered up a bit at the end of the day (which probably had something to do with the poop that her daddy will have to clean up when she gets home : hahaha); and I am under 1400 calories for the day (so far, I still have to eat at 10:00 for pills, but I can do it!).
So that's my update. I need a nap, I've got House to watch and that is that!
Saturday, September 02, 2006
Friday, September 01, 2006
My choice for August's perfect post comes from the lovely Miss Zoot, for her post, He stepped up to the plate....
The post itself is wonderful, all about falling into the trap of "being the one who does it all," (with the really great line "Of course, since I'm still the reigning Bitchiest Woman On The Planet (with a trophy), I'm having the hardest time thanking him. "It's something you should be doing anyway, no one thanks me when I wash dishes! Or feed the baby! Why should I thank you?" (Although that title certainly doesn't fit, Miss Z). Really, though, it's the post of the month because it so hit so close to home for me:
With the Punkin and the Peanut here during the week, there's a ton of additional stress on my body: I'm having to move so much more, having to make my brain focus,etc. and it is really wearing on me. But it doesn't have to be this hard.
Mum and I are watching them Together, so why don't I let her do more of the work? Why do I insist I am fine long after we both know I am not fine? Why do I insist on doing all the little things that could very easily be overlooked for now? Why haven't I learned yet, after almost 12 years of being sick, that I need to listen to my frickin body???
Having the Punkin and Peanut here has highlighted just how far away I am from being able to have my own family, right now.
(Of course, I knew this: it is not exactly a surprise, since I am semi-bed bound and have a hard time getting around enough to make meals for myself, but spending 8 hours a day with a 6-year-old and a 3-month old? Very much clinches it.) Because I am totally a "One Who Does it All" person, and have a hard time not taking over even when I am very very sick (cough: Exhibit A: NTE has pneumonia, and yet chases after then 1-year-old Punkin when he comes to the doctor's with me. Exhibit B: Punkin and Peanut are here from 9-almost 6, when I really should have said: "No, I don't think we can handle that much P&P time, I'm just not up for it.")
I've really had to put a lot of dreams aside, for now: I'm not working, I'm not dating, I'm barely doing more than changing the baby's diaper and playing another round of Monopoly Jr everyday, and there's things that I am missing out on, sure. But there's a reason those things are on hold: because when I am a mom, and a wife, I'll want to be able to give it my all. Like Miss Zoot does. And, I'm giving everything I've got to getting well, to being an Auntie, right now. So I can't, right now, be a Mum. It'll just have to wait.
So, go over there and check out Miss Z's post, and see if it doesn't make you think about your own parenting style.
Although Miss Zoot's post made me think about my own situation, Meghan over at
My Dog Harriet had me thinking about other people's situations. Her post on Post-Partum Depression, (Letting the Cat out of the Bag) and the comments that followed it? Amazing. Catch-your-breath amazing. The kind of stuff where you know the blogosphere is actually helping someone: Someone who is sitting there at their computer, thinking they're all alone, and then crying tears when they find out they're not. Kudos to her, her commenters, and all the moms out there who made it through.
Also in contention this month were:
Maya's Granny, a self professed "elder of the tribe," continues to share her wisdom with the rest of us. She had two posts that really got me thinking this month:I'm the Granny Nowlike Miss Zoot's post, had me thinking about what it means to be the mom, the aunt, the granny.
& the intriguing Sexualizing Children, where she talks about the choices our society has made regarding women and children and how they are dressed. The implications of those choices maybe something you haven't really considered before.
The Lipstick Chronicles had a good post, Savage Breast, about something I didn't understand the big deal about (It's a boob, people... you've seen 'em before, ain't ya?)
A new blog I added to my bloglines this month was Within the Woods. Adding to my Bloglines is a very selective process, people. I only have so much time available to check blogs, and I want them to be the best. Well, I think this post, Tv Dad , shows I made a wise decision.
Lady Strathconn gets a nod for her post I Should Have Been a Better Friend, because it moved me. When I got sick, a lot of my friends (high school sophomores like me, mostly) just disappeared. It hurt so badly and in so many ways I doubt I could explain. But the few that stuck by me? Are treasures beyond measure. And the ones I've found since? Who've only known the "sick-me"? Just as priceless.
And a last minute nod to Sheryl over at Paper Napkin, because she made me laugh out loud yesterday with this little bit:
"Yes, well, the reason I'm not sleeping is because the dog was on the bed, trembling. This can only mean one thing: Mount Vipoopius is about to erupt. I grab her by the collar, and run to the back door to try get her out in time, and she tries to squat and release before I get there. It's a little game we play, much like fetch, only with poop and expletives."
Sheryl, I'm not sleeping either, but it's not for a reason as funny as that. If that helps.
So, go check out some perfect posts, my friends: wander to your heart's desire!