This is not how we did it in my day.
The State of My Union
January 25, 2011 by 7 Comments
As I am sure you have noticed, I’ve stayed away from blogging my usual political rhetoric as I battle Lupus. I’ve done this for a few reasons, not the least of which is I get very passionate about politics and it gets me worked up. It’s hard to rest and recover when you are screaming at your television screen.
But I’ve realize something as I’ve sat on the sidelines, that I have known all along…
…politics is personal, and there is no escaping it.
Tonight the President will give his State of the Union address, and I am jumping back into my punditry and commentary. Not because I want my Lupus to flare worse, and not because I feel compelled to give you my take on whatever tonight’s hot button issue will become…but because I have realized nearly everything hitting the news cycle directly affects my life.
Health care reform. Violent political rhetoric. These are issues literally banging down my front door. Jobs, benefits, and the President’s new priority: education. These are issues I am dealing with every single day as an American citizen, mother, patient, blogger, and victim.
People can talk all they want about it just being ‘DC’ or it just being all hot air and men in suits…but when those suits decide the fate of things like ‘pre-existing conditions,’ ‘mortgage overhaul,’ charter school status, and motivate mentally disturbed people to shoot a Congresswoman and threaten my family…well, the term ‘just politics’ no longer seems to apply.
It’s personal. It always has been. And it always will be.
You can follow my State of the Union commentary tonight on BlogHer Chatter and Twitter.
Us
January 18, 2011 by 5 Comments
I’m having one of those “I wonder if we’re too quirky for our own good” here in Motherhoodlandvilleburbia moments.
Hmmmm.
It will pass, I’m sure.
The D Word
January 16, 2011 by 16 Comments
My doctor has talked about Social Security and Medicare.
My Mom mentioned getting a handicap sticker for my car.
I’m 36-years old and I still want to learn to surf and walk the parks at Disney World. I realize that last one seems lame but, it’s what is upcoming in my life and I guess it’s the little things.
I want to be able to dance to more than one song while the family plays Just Dance 2 on the Wii.
I want to be able to go to the grocery store and not have to nap when I get home.
But I won’t. If I am lucky, I will go back to work soon and *walk a 5k in March*. But mostly likely I have to get used to the idea of being somewhat disabled.
Oy. That hurts to type that.
More than it should, I know. I realize it shouldn’t be stigma or a bad word in my vocab…but it is. It’s not me. And I will fight it ever being me.
Because I am NOT really disabled.
I have a disorder that is being a whore. A big, fat, whore. Once we get it under control I am confident I can get out of this fat suit, out of this exhausted frame, and running circles around my block.
Yes, I am angry. And I think that’s healthy. I think that’s ok. I have every right to be angry. Just when we think we’re getting back to normal around here I end up sitting in a recliner, hooked up to an iv, getting chemo pumped into me. The word ‘unfair’ comes to mind. But call me selfish.
I want to take my dog to the dog beach and run with him next to the ocean. I want to feel good enough to wake up on a Saturday and join my husband at pilates. I want to be able to clean the kitchen after I cook dinner and not feel like I just did the most strenuous workout known to man.
I want to not wake up in a pool of sweat.
I want to not be taking 60mg of prednisone a day, for months on end. And gabapentin. and plaquenil. And injections of methotrexate. And vitamins. And folic acid and ridiculous amounts of D that should come from the sun while I sit on the beach and drink a margarita, not popping a capsule.
I want to see my eyes again, uncovered by my steroid swollen cheeks.
I want to take a bike ride with the kids. Hell, I want to take 50.
I want to drink a god damn beer.
I just want to live. And I want to destroy the world disabled, the idea that I could be disabled, and the notion that I will be anything but normal again.
Maybe this is why I’m so addicted to Angry Birds. Those fucking pigs are Lupus and I’m the birds. I keep flinging myself into them and yet they keep coming back. Stealing my eggs. And that makes me ANGRY.
Hulk like angry.
Maybe angry is what I have been missing through this whole ordeal. Maybe I haven’t been MAD enough. I’ve been scared. I’ve been upset. But I think what I need is to get down right pissed off.
I’m better when I’m mad. …no really. Even my Dad will tell you it’s true. Want Erin to have a better basketball game? Piss her off before the game starts. And he would try too.
Want me to work my ass off to win an election? Show me an injustice.
I think that’s exactly what it’s time to do here. Take the idea of disabled and bomb it like a black Angry Bird. Say FUCK THIS and put on my ass kicking boots and stomp.
It’s time to get mad, and take control. Even if that is seemingly impossible. Because if there is one thing I have learned through all of this, it’s that ANYTHING is possible.
I can make the difference. I can be the one to help find the cure. I can take control of my health and know I am not disabled, not doomed, and certainly not destined to lose even ONE egg to those stupid pigs.
*If you’d like to join me in defeating Lupus, you can read more here.
The Apple Doesn’t Fall Far From the… oh nevermind
January 13, 2011 by 8 Comments
Mom, I want a new game.
You have like 40 new games…you don’t need a new game.
Mooooooooom, but the App store says there is a new snail game, I want the new snail game.
Wait…the App store? How do you even know where the App store is? Did the App store TELL you it had a new game?
I always look for new games Mom, I feed my puffle, feed my fish, feed my reef animals, and then I see if there are new games at the App store.
Sigh.
Oh Apple, what have you done?
MoonDance
January 11, 2011 by 36 Comments
I’m not really recognizing myself in the mirror these days. The months of meds are starting to take their toll, and the “moon” face that often accompanies high doses of the steroid prednisone is now full-fledged and looking back at me.
I just went from the thinnest I have ever been, to rounder than I have ever been and it’s hard. I’m not going to lie. It’s really hard. I realize it is saving my liver. I realize it has kept me out of the hospital. I realize it is all very necessary right now, but dammit if it’s not really, really hard to LOOK like this round-faced sick person. I was just buying those really cute boutique clothes I usually don’t fit into. Like- just a few months ago. I liked that.
It’s funny what illness does to your head. You go from just wanting to feel good, to just wanting to live normally, to just wanting to LOOK normal…which in the grand scheme of things should NOT be important. But when sickness robs you of so much, some days you just want to feel pretty.
Lame. I know.
But when your whole life is upside down, and you don’t even feel like yourself in your own skin, feeling pretty really can work wonders. And right now I do not feel pretty. I do not feel like me. I do not feel like a woman who is desirable or wanted or hot or even slightly cute.
I look like all those sick people at the hospital, hopped up on steroids, round cheeked and fighting a battle. And I can talk all I want about how what I look like right now does not matter, so long as I am winning…but I’d be lying.
It does matter.
I care.
And I know I shouldn’t.
I just want me back in so many ways, and feeling fat and ugly robs me of even more dignity. Even MORE humiliation from this crap ass disorder that keeps taking so much.
I know it won’t win. I know it is temporary. And I know I will get back to being myself. But damn if I can’t stop thinking about how I will cringe as I see people I have not seen in a while. How I will cringe when we look at photos from our family recovery retreat planned for February. How I cringe as I try to do my hair that is thinning, how I cringe as I try to hide the dark circles under my eyes, how I cringe as I try to fit into pants that fit only a few weeks ago.
Lots of cringing going on here, because I feel so damn ugly. So not myself. So very, very, very round.
But then, as always, my support system props me up. And reminds me to shut off that part of my brain.
My husband texts me to tell me I am, and will always be, his beautiful bride.
My son pets my round cheek with his soft hand to tell me he likes me better this way, because my smile is bigger.
And I exhale, and try to remember it does not matter.
What matters is I keep winning.
Winning is the prettiest of all.
And Since We’ve No Place To Go…
January 3, 2011 by 9 Comments
I’ve watched her wish for it while staring dreamily out her bedroom window.
But Mom, why won’t it ever snow here? Why? It’s winter. Winter means snow.
I’ve heard her bemoan sunny Southern California for its palm trees and sunshine, begging for just a tiny bit of white powder.
I’ve even caught her wishing on the first evening star.
Last night, she and her brother threw snowballs at each other in their own yard.
Tonight I just might have her wish for a few other things.
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