Junky

My new weekly fun

I started injections this week. Lupus is a conniving bitch that keeps trying to outwit my body. But we’re ahead of her.

That doesn’t make this any easier though. I feel like my husband having to pick up syringes at the pharmacy takes us to another new and elevated level of crazy around here. Now it’s not just pills and creams, it’s needles. And that scares me.

What comes next? Nurses in my home? Tanks of oxygen or tubes or IVs?

I want to believe that this is run-of-the-mill. That diabetics and others do this all the time and this is just not a big deal and I need not freak out about it.

But that’s not entirely true. I now have to inject myself weekly in order to keep Lupus in it’s cage.

The kids haven’t seen the needles yet. I’m sure at some point I will explain, and they can watch if they want. But of course I worry how they will process this in their tiny brains. I worry how my very needle-phobic husband will cope if I have to teach him how to administer the meds.

Yet another hurdle in what seems like a never-ending battle.

#SUCKIT Lupus. YOU WILL NOT defeat me. I will stab myself happily and mock you as I do it. Keep throwing your best at us, and we will keep knocking you back. This week you even flared as I returned to work- sending my inflammation markers back up and my energy back down.

But I don’t care. I’m over you. Done. Bring your needles and whatever comes next. I’m ready.

A Gift

Driving in the Momvan last night my daughter asked me if animals died like people die.

This is a frequent conversation in our home lately, stemming from my rash of hospital stays and influx of relatives and friends helping to care for me and mine.

She wanted to know if animals lost their colons and uterus too. If they stayed in hospital beds, and if their animal families could visit them.

We arrived at our destination and my son unbuckled and laid his head on my shoulder. He didn’t have to say a word, I knew he just needed to be near me. Death talk does that to him.

My husband, the rock as of late, has been shouldering more weight than I can bear to watch. And after discussions of funerals and what I would wish, and wills and advance directives and how he would cope as a widower, I crumbled inside to put such a burden on those I love.

The pit of my stomach hasn’t been filled with dread over my health, it’s been filled with dread over what my health as done to those around me. It’s gnawed at me with a fierceness. I’m the one who should be caring for them, and it’s very hard for me to play the role of invalid.

But today, I finally got to lift some of that weight. The specter of death hovering in my daughter’s head. The anxiety in my son’s mind. The uncertainty in my husband’s heart.

Remission.

The doctor said remission. And in his office I broke down, and he touched my shaking hands, and he assured me Lupus was, indeed, in it’s cage, locked.

The long road that started with a hospital stay in August of 2009, the tests at UCLA where I ate radiation, the bowel rest hospital stay, the exploratory surgery, the Mother’s Day hospital stay that broke my heart, the colon and gall bladder surgery where my kids were not allowed to see me, the emergency room visit where I cried in anger at the sky because I was again hooked up to tubes and ivs, the total hysterectomy where I mourned my womanhood, and the diagnosis where we stood dumbfounded and planned my death…now, finally…

Remission.

I feel like I have been given a gift I don’t deserve, but my family does. I feel like the world is different in so many ways. I feel like I owe so many people so much…but most of all I owe these people around me the world.

And I will deliver.

TICKLE FIGHT

TICKLE FIGHT!!!!!

This is what you should be doing today.

A Piece of Me

If you’ve hung out with me at all over the course of the past year or so, odds are you have something to remember me by.

My hair has been falling out steadily for a good 18 months or so. It’s on your laptop bag. It’s on your backpack. It’s on your sweater. If you’ve hugged me it’s probably on your shoulder.

today's hair loss. suck it lupus

Sorry about that.

Turns out this Lupus thing makes my hair thin. Who knew? It was always just a bit of a joke around here. I shed. I would shed and we would laugh.

ha ha look more hair!

But I’ve noticed something lately that isn’t as funny. I can see the spots on my scalp. Now, Aaron assures me I’m the only one who can see them, but I can see them.

Maybe it’s all in my mind. But I swear my part is very… party. Bigger. Whiter.

So now with the usual vitamins and meds, I’ve taken to hat buying. Because what’s a girl to do who’s scalp is monstrously thinning but buy cute hats? My Mom suggested I cut my hair, so I’m not brushing it as much … but I like that at least my hair coming out the back of a hat looks normal.

Maybe I’m over-reacting.

Maybe it’s really not as bad as I’m imagining and it’s just given me something to focus on. Maybe this very thin line of hair on my scalp is yet another very vain and silly bump in this summer filled with hospitals and I need to just get over it.

Or buy more hats.

Time

It's a good day when I can do this

The clock is my biggest enemy as of late. In a day where I usually have nothing to do but pick up or drop off children, you’d think the clock would be my friend. But no.

Either I’m too tired and need a few extra minutes before I get back in the car, or I’m too anxious and lonely and need the clock the move faster so my babies are home in my arms.

I stare, wondering if I can make the hands move so my husband can leave work. I pace in the kitchen waiting impatiently for the rest of the meal to cook, so we can all sit down together and talk about our days.

Not enough or too much – the clock taunts me all day long.

And then there are those stolen moments, that only last a second or two but feel like a lifetime. My son asks me to test his new invention or my daughter asks me to cuddle on the couch with her. We all melt into each other and inhale as if we have nowhere to go and nothing to do.

It passes and we exhale … the tv seems loud again and the dog runs and jumps to tackle us all .. but not before I lock another moment in my mind, cursing and thanking the clock ticking overhead.

Sometimes A Picture Is Worth A Thousand Words

Spring, Summer 2010 – aka the Year of Doom. Every incision.

Count the incisions

Artwork by Aaron Vest

The Lupus Wrangler

There is no cure for Lupus.

Imagine as I tried to explain that fact to my kids as I took my first round of medication to fight the disorder.

It keeps the Lupus quiet in my body.
You mean it puts it in a cage! Mom, put that Lupus in a cage and show it who is boss!

For @Technosailor :p

I’m a Lupus wrangler, according to my children…and I plan on living up to that image.

It’s hard some days. The disorder is currently being a jerk to my liver. Which means a step up in treatment and a lack of dirty martini’s for Mommy. Sigh. But that’s ok…because we’re fighting to keep Lupus in it’s cage.

Help us.

Dear Michelle Obama, A Look Back

About a year ago, I wrote an open letter to Michelle Obama and published it here on the Huffington Post. It was picked up by the Chicago Sun Times and for one reason or another became a heavy topic around the web and at dinner tables because me-the white suburban mom-dared to utter the word everyone is thinking but no one wants to say.

It was probably one of the most sincere and heartfelt things I have ever written in my life. At the time I was getting ready for Christmas with my family and watching the candidates slowly declare for 2008.

I couldn’t help but wonder what on earth Michelle Obama was thinking. Not as a prominent player in American politics or as the wife of a Senator. I was wondering what the “Mom” in her was struggling with, if anything:

“The simple fact that I know you are weighing this decision with such intensity makes me like you and your husband even more. It confirms to me you are the type of people I think you are: smart, loving, educated, and with great common sense. Frankly, it makes me want your husband in the Oval Office even more. I’m just not sure my needs outweigh the cost to you and yours. I don’t want to seem like a selfish American, but it will take something BIG to give hope to this country and those of us disheartened, disenfranchised, and just plain disgusted with the current state of affairs. Yes, I want Senator Barack Obama to be that something big. I want him to be the answer. I want to ask you to support his run in 2008. But I can’t. I can’t ask you to do it for me. I can’t ask you to do it for the children or for the future or for the good of mankind. You are a mother, like I am a mother, and I know I can’t ask that of you.

I can only wait.

Whatever you decide, the Moms, if no one else, will understand and have your back.”

Many things have happened in the year since I wrote those paragraphs. Senator Obama is, in fact, a presidential candidate and depending which poll you like best, he’s not just in the race-he’s in the lead.

Again I find my mind wandering back to Michelle Obama. Because she’s a mother. Because she’s a woman holding two little girls hands, standing next to her husband, with history on the line.

I get twinges of this feeling with Senator Hillary Clinton. They are more reserved, and I haven’t exactly figured out why. The mother piece is there. The woman piece. The history. The first. I have a tremendous amount of respect for the Senator. If she is the Democratic Nominee she will absolutely get my vote and I’ll be first in line to champion the first woman President of the United States of America.

Maybe it’s the sacrifice that is missing. Maybe I look at Michelle Obama and her family’s potential first differently than Senator Clinton’s. We all know the Clinton family has been dealing with the White House and all it entails, and Chelsea is grown and it seems just less…risky? Maybe that’s naive of me. Whatever the reason, the more I see Senator Obama climb in the polls, the more my mind thinks of his wife and family.

When the firestorm erupted over my original article I responded on my personal blog,

“But that really is what all of this is about. It’s about being a mother. Do you go with showing your children just how big of an impact you can make on the world? Do you take the safer route? It’s about choices. And the millions of choices that go with motherhood. Breast or bottle. Work or home. Cloth or disposable? It. Never. Ends.

My letter to Michelle Obama was nothing more than my sympathy and empathy for having to make yet another motherhood decision. And as we all know, what is best for one family is not, necessarily best for the next.

I still breastfeed my 21-month old. That is a choice that I get shit for. But it works for my family. Sure, it’s not an oval office issue or anything, but it’s an issue none the less. And it seems we women get shit for any decision we make on any motherhood issue.

As a mother, and a mother with a rather LOUD speaking platform, I will happily get the back of ANY MOM for their decisions. It’s time for the world to SHUT THE FUCK UP and remember it’s the mothers who sacrifice, suffer, and agonize over those decisions.”

Then, of course, I received another round of hate mail because I’m a mother and a woman and I curse.

The Obama and Clinton family will always have my utmost respect simply for trying to be the first-motives not withstanding. There is risk in this for white, Southern, male John Edwards but I’m not sure it’s the risk of the first minority or the first woman.

I realize we’re all trying to get past this whole race/gender thing…but let’s be real here-you and I both know people who say things like “I just don’t want a black man as president” or “I just can’t vote for a woman.” Throw in the “mother” and “family” factor and I think the Obama’s and Clinton’s will never get a fair shake.

I know-I’m a woman. I’m a mother. We can’t even pick out the right toy at the store without it being a national issue.

I am at a total loss for what I may be writing one year from now. I’m not even sure who I’m voting for let alone what I think might happen come next holiday season. Will we be talking of risk and firsts or will be over it entirely and already bitching about those first 100 days in office?

What I do know, is the same holds true today as I wrote last year:

“The talking heads and pundits can make fun of me all they want, but how soon they forget photos like this, and this, and this. It’s easy to dismiss a ‘self-described Mom’ when she’s showing support for a fellow mother, but it’s not so easy to dismiss all the mothers, wives, and children I see in those photos.

So mount your protests and do your best spin on my very honest letter. Just keep reading. Because the Mom voice will stay loud, and we’re making the decisions that rock the world-whether you like it or not.”

Crossposted at the Huffington Post