I am not ready for this.

The box has been sitting our bedroom for months. MONTHS.

She mailed it.

She entrusted me with it.

And I let it sit there, ignored.

I’ve heard all the stories. They are wonderful. I just am not ready.

I’m not myself. My house isn’t itself. We’re not there yet.

But fate has forced my hand.

With one email, that box had to be opened, because that dress had to continue on its journey. And it had to leave NOW.

There was no time for a photographer. There was no time for make up. There wasn’t even time for a shower.

Jenny and Kelly both said it would fit.

They lied.

I sat in our bedroom and cried because I finally got the courage to try it on and there was no way even one hook was getting hooked. And there was no one around to hold it together, pin it, tape it…it was just me and this damn dress.

I hated it already.

I wanted to take a pair of scissors and cut it into a million pieces and mail it off to the next woman and tell her it’s all a LIE.

Sometimes magic doesn’t happen. Sometimes Lupus happens and your body is morphed into a cartoon like character whose only magic is to suck the joy out of the room.

But I tried anyway.

I had to.

This was my last shot with that damn dress.

So I decided that maybe, just maybe, if I could hook one hook UNDER my boobs I could somehow then spin it around like a bra and pull it over for ONE photo.

Standing in my bedroom with tears streaming down my face and the original red dress on backwards I pushes the corset below my breasts and attempted to hook just one of those hooks.

I threw my head up to the ceiling, closed my eyes and pulled the two sides together.

Magically one hook made it.

Now to turn the entire thing around.

Slowly, and painfully, I twisted the corset.

Inch by inch it moved, scraping me along the way to the point of drawing blood, until it was finally facing the right direction.

I pulled it up and over as best I could, grabbed my camera phone, and headed downstairs.

I walked over to my favorite jasmine vines and held out the camera as best as I could with one arm, while trying to stay in the dress with the other.

I didn’t want anyone to see.

Eyes shut tight, I took another breath. I tried to remember the woman inside. I tried to remember that no matter what, she is still in there and she is still sexy.

I took another breath.

I took one more look at the sky and realized I am fighting a battle and winning. I am a warrior. I am in here and unafraid.

I am Erin Elizabeth Kotecki Vest and I am beautiful.

I walked back upstairs.

I unhooked the one hook.

I packaged up the dress and sent it off to the next woman.

I exhaled.

I cried again.

But this time for entirely different reasons.

When I don’t know what to do, I usually make a huge mess. I also tend to revert to the only things I know.

It’s a throwback to how I was raised and all the superstitions that came with a Catholic upbringing.

So I’m sitting here, tears streaming down my face, with a mess in front of me that I have no clue what to do with. There’s a worry stone, given to me by a friend of my husband’s… she had picked it up in Tibet and it was to help me get through my first pregnancy which was very difficult.

It wasn’t supposed to be difficult. I was supposed to be one of those women who worked until she gave birth and glowed and life went on as normal while I incubated our son.

I was supposed to be a lot of things.

Of course back then we had no idea I had Lupus, and we had no idea that premature labor would land me on bed rest for months, causing horrible strain on my husband and the rest of my family. I could do nothing to make the situation better except lay down and hope our child was healthy. During that time, that smooth worry stone was a like a hug of peace around me.

Yes, I know that sounds corny. But when you have no control, you’ll take a worry stone from Tibet and rub it with your thumbs even if everyone laughs.

Life went on, and our son was followed by our daughter and then my health began to deteriorate. Always with me as the cause of everyone’s strain. And always with me having zero control over the illness that was causing it all.

I remember lighting candles at the Catholic church in Santa Monica close to my husband’s work at the time. Why? Because I didn’t know what else to do. I had no control and everything practical we could try had been done.

I remember standing in my back yard in the dead of night, hopped up on 80mg of prednisone (steroid) and incapable of sleeping. I sat on the cold brick edge in our yard and talked to the full moon. Legends tell me the moon is a woman and if she can pull those beautiful ocean waves into the sandy shore…surely she could cure me of this terrible pain in my body and the terrible pain it has caused those around me.

More recently I took the kids with me to light a candle and the church was closed. While my husband and I laughed this off, inside it was like a punch in the gut. I NEEDED to light a candle, and the CHURCH WAS CLOSED.

Again I find myself having one of those days where I am in need of something and am at a loss. Do I light a candle? Rub the stone? Talk to the rain steadily tapping my patio?

No. None of those were right. So I dug into my bag of magic I keep close to me always.

My favorite Aunt died not too long ago, so the pain is still very sharp. This morning after I dropped the kids off at school I rummaged through my purse…The stone from Tibet is in there. The necklace from my wedding must always be close, along with the first jewelry the kids bought me from those school ‘shops’ during the holidays. You know the ones where they turn to rust before you haven worn them a week but you must keep them forever.

After deciding I needed my Aunt’s special, Pope blessed rosary, I pulled it out of its case and began hysterically sobbing.

It was broken. Just like the church doors were closed. Just like each pregnancy was supposed to be perfect. Just like my life was supposed to be ME helping OTHERS not the other way around, my very special rosary was broken. It’s circle was incomplete.

My dead Aunt’s rosary was laying across my chubby hand, in two pieces instead of one. The irony was nearly too much for me to handle.

Not being one to just accept the broken rosary, I sprang into action. Admittedly rather unthought out, rushed action. Typical of me.

One of the links was unlinked so I scrambled and rummaged through my husband’s tools to find something to smush it back together and make it whole again. It had to be whole again. Everything had to be whole again. Now. RIGHT NOW.

My therapist laughs and shakes her head at my patience issues. This is a perfect example.

Standing in the garage, looking at a box of tools I never use and barely understand, I realized I was dealing with a very delicate piece of wire where the rosary had broken. If I pushed it too tight with the pliers, it would snap. If I didn’t push hard enough, the circle would remain broken. The rosary incomplete or destroyed. These were my options.

But it’s really hard to try and hold my swollen hands steady and see through tears and fear and pain. But I grabbed the best tool I could find and fumbled and dropped it to the ground almost as quickly as I picked it up.

I did the best I could to gently push together the link so it would stay. And as I was pushing I realized there was a third option and the one I always need to look for when feeling as though I must act or I must fix or I must somehow make up for the illness that is not my fault yet has fucked up everyone’s lives.

So instead of forcing the rosary to be perfect and whole, I very simply put it where it needed to be and gently pushed the wires. But not before letting out my anger that it was broke, yelling at it being my stupid luck it would be broke in the first place, and forcing and pushing and being totally angry with it in my overszealous and impatient way, making it 40 times worse than when I started.

So I stopped. I just STOPPED. The circle is now whole, but it’s not right. And that’s ok. And I’m telling myself that it is ok it’s not perfect. Nothing is going to be perfect with Lupus in the picture, but it can, at least, still be.

I’m setting down the rosary. Putting it back in the bag next to the stone from Tibet. I’m doing my best not to put too much faith in my new voodoo doll that is supposed to ward off bad luck and evil spirits.

Instead I am cherishing the wedding necklace. The special jewelry from my kids. The watch my husband gave me. The locket also given with so much love. And the key worn around my neck, with a similar one worn around my daughter’s neck…carried by my son on his backpack, and carried by my husband.

While I may be getting better, Lupus leaves a strain on families that can not be described. The strain and pain can not be fixed by candles, rosaries, or worry stones- no matter how hard I wish them to, or try and force them with shaking hands in a cold garage on a rainy day.

Patience. Love. More patience, and hard work are the only way to go. It hurts like hell…like no hell I have ever known. And it’s a hell worse than any surgery or any treatment or any hospital stay that this evil disorder has put me through. But I refuse to let it win.

But I need to remember I am winning the battle it has waged against my body. It has been slow and it has taken what feels like forever but I AM WINNING. So you damn well better believe I will also win the battle it is waging against my life and the lives of those around me.

I’m slowly learning how to win that battle, and my weapons will not be rosaries or candles…but humility, understanding, trust, and patience. And learning how to shift the focus from myself and the illness to everyone else and their needs.

When your life is nothing but doctors and ivs and lab work, that is harder than you might think.

But I will find the faith in myself to do this, just like I have found the faith in myself to fight and keep fighting. Because no matter how hard it gets, I know I am never fighting this alone.

Lupus made one hell of a mess and it’s time to start cleaning it up…cleaning it ALL up.

I’ve been on and off prednisone for about two years now. It has taken me from feeling sexy and slim and hawt to feeling puffy and moon-faced and anything but hawt.

It has saved my life.

But, like many women before me, I have been struggling greatly with the puffy and, as my kids say, ‘squishy’ frame these steroids have given me.

In fact, struggling is probably the really polite way of saying I FUCKING HATE MY PUFFY FACE AND MY PUFFY BODY BECAUSE I FEEL LIKE EVERYONE IN THE WORLD IS STARING AT ME AND JUDGING ME AND IT MAKES ME FEEL UGLY.

I’m a smart, educated woman who knows better. I KNOW damn well that beauty is within and that we live in a society so obsessed with weight and glamor and looking good that it creeps into the back of my otherwise sane mind and pushes me to think insane thoughts.

While fighting Lupus I have turned down television gigs for fear my puffy face and body would detract from my political message.

While fighting Lupus I have turned down events (when healthy and able) because of my puffy face and body for fear those meeting me for the first time would think this is how I normally look and would judge me on my appearance.

…and I know better.

Today, actress and activist Ashley Judd destroyed the media for daring to speak about her recent puffy face…which turns out is puffy for reasons similar to mine- she was sick for more than a month and had to endure several rounds of steroids:

Consequently, I choose to address it because the conversation was pointedly nasty, gendered, and misogynistic and embodies what all girls and women in our culture, to a greater or lesser degree, endure every day, in ways both outrageous and subtle. The assault on our body image, the hypersexualization of girls and women and subsequent degradation of our sexuality as we walk through the decades, and the general incessant objectification is what this conversation allegedly about my face is really about.

She goes on to write about how the media went after her puffy look, and has gone after her ‘flawless’ look and then claimed she had work done. Judd, however, steals my heart and makes me sit up straight with this reminder:

When I have gained weight, going from my usual size two/four to a six/eight after a lazy six months of not exercising, and that weight gain shows in my face and arms, I am a “cow” and a “pig” and I “better watch out” because my husband “is looking for his second wife.” (Did you catch how this one engenders competition and fear between women? How it also suggests that my husband values me based only on my physical appearance? Classic sexism. We won’t even address how extraordinary it is that a size eight would be heckled as “fat.”)

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photo by Megan Hook Photography