It is as if the real Erin is tiny, frail, and pushing with all her might against skin and bone and fat and muscle to get out.

That’s not metaphorical, it’s how I feel inside my body as I come off these powerful steroids. I am trapped in this stretched and padded frame, pressing hard from the inside.

Pressing and pushing and poking so that my chin moans when I turn my head. The back of my neck, heavy with a steroid hump, screams in pain if I dare attempt to look to the sky.

This is what it is like to live with Lupus.

As I showered this morning, I made a mental note of my growing stretch marks. Purple. Red. Blue. Almost like a hand mark from my back to under my arms. Then again across my back, above my hips, around my very swollen stomach.

This is what it is like to live with Lupus.

It’s hard to get dressed. To make dinner. To brush my teeth. Sometimes the pain, no…the heaviness…is so overwhelming I am hospitalized. I need intravenous drugs to take away the ache that pulses through every muscle and joint. I need to be admitted, overnight, in order to get ahead of the sheer volume of uncomfortable pain that can over take me with one small dosage slip up or weather change. Or infection. Or medication change. Or …who knows.

I just know this is what it is like to live with Lupus.

Tonight I raised my arms to do dishes and winced. Is it the tapering of this strong steroid? Is it the weight that steroid has put on my arms? Could it be the muscle relaxers? Perhaps some break through pain as I try a new fibromyalgia drug.

This is what it is like to live with Lupus.

And as I get the house and family back to normal after my brief hospital stay, I re-asses the calendar. Two doctor appointments on Monday. Three pharmacy runs this week. Juggling school pick-up, kid activities, classroom presentations with my drugs that render me unable to drive, think clearly, and be fully present.

This is what is it like to live with Lupus.

As I type, I take breaks to rest my puffy wrists. I massage my elbow, stretch my fingers, and open another email or two…this way I can read while I wait for my body to recover enough to continue my thoughts. I read messages from family and friends wishing us well, asking why I was in the hospital. I read yet another unsolicited list of herbs or chants or veggies or nuts or fruits I “must” include in my regimen in order to be “cured” of my ailments. I read more about mini-strokes, inflammation on the brain, and what to expect next week in my son’s classroom. I massage my wrists more and then choose to read about the royal wedding. the NHL playoffs, or a pinch of politics- just to get away from the ever-present, ever-taxing disorder that has taken over my body and my life.

This is what it is like to live with Lupus.

It is easy to be discouraged when your body is overrun by pain and medication. When your mind is in constant worry over which organ will be inflamed next, or which morning will result in yet another hospital stay.

But it takes courage to remember Erin is inside…still pressing on that stretched skin. I continue to push. I continue to get out of bed. I continue to raise my arms, no matter how uncomfortable, to wash my own hair and brush my own teeth. I continue to space my medication so I can get back to driving, even if only to and from school. We are tapering off this steroid. My body will return, slowly, to its normal size. And eventually, as I continue to press, I will break through.

This is what it is like to live with Lupus.

May is Lupus awareness month. You can learn more about Lupus at the Lupus Foundation of America

I’ve just left the hospital where I was admitted and spent the night after not being able to control my pain at home. Pain from Lupus.

May is Lupus Awareness month. Learn about Lupus with my family and I as we continue this journey.

I love my geeky, gaming, gigantic-hearted children.

…and the ovaries and cervix too.

This is my daughter and I as we attended our first BlogHer conference in 2006. She’s on my hip, and there is nothing quite like the feeling of a baby on your hip.

I want a baby on my hip forever.

That’s really what this boils down to.

I had a moment this week, looking at a baby on tv, and I ached.

I ached so hard and so bad I had to get up and walk around the house for a minute. I stood up from the couch and took a few steps into my hallway where all I could see were the kid’s toys scattered across the playroom. So I averted my eyes, looked up, and found them glaring at our fireplace mantle, riddled with photos from over the years. One with me, holding my son, who couldn’t have been more than two. All chubby cheeked and round.

I could feel his diaper under his clothes as I patted him on his butt. That pat, pat, pat, hallow sound only a diaper under clothes makes.

So I turn the corner, walk up the few stairs into the dining room and glance at the cabinet holding the photo of my husband and daughter. She can’t be more than two and still showing the plumpness of having been breastfed.

She’s got her tiny, tiny fingers gripped around Aaron’s shirt- holding on to her Daddy with that baby vice grip. The one that would also entrap my hair and her brother’s toys. The cat’s tail. Those tiny, STRONG fingers that hold so so tight as only a baby’s can.

The kitchen. I will walk into the kitchen, it must be safe there.

The ‘kid’ cabinet is open. Plastic plates and cups are strewn about as if one of my spawn was just inside said cabinet…rummaging for God-knows what. This leaves the forgotten items in the back exposed for me to see. Old sippy cups. The ones I should have thrown away years ago. The ones we used while transitioning the kids from the breast. That white and pink one with the butterfly. The green and navy blue one with the stars. A thousand warm and fuzzy memories fill my brain just from those two cups. From cups. Simple cups.

I feel like I’ve been punched in the gut.

It all seemed to happen so fast. Was it really Lupus that took my uterus? I had pain, yes. I had horrible inflammation, yes. But did we really do everything we could have to save my reproductive organs? It’s all such a blur. Was this my choice? To rid myself of the pain and trouble? Was it entirely necessary? Sure my uterus took a beating, and sure it had been through hell…but what if I could have carried just one more baby. Just one more pregnancy.

Just one more.

I had a chance to do just that. It didn’t happen. It would have been beyond hard for many reasons, but my body did have a chance. And it’s the chances that leave me wondering endlessly.

The decision was made long before my uterus left though. There were to be no more babies in this house. My husband and I knew this. But the hope…the off chance.. the idea… reversals do happen, they have been done.

Now. Now this can’t be undone. You can’t put organs back in, you can’t give me back my periods or all those eggs. You can’t reverse a hysterectomy like you could have a vasectomy.

Nevermind I  was terrible at being pregnant. I forget all of that each time I see my kids. Was Lupus the reason I barely carried my children to term? I spent months on bedrest? I had so so so many problems and was high risk? Could that beaten and battered uterus have done it just one more time? Was there any chance of convincing my husband to undergo another procedure?

I may know the answers to all of these, but it doesn’t stop me from wondering. Not when I feel that tug in my gut when I see baby, hear someone is pregnant, or look at the children we did create. It doesn’t matter that the answer to all of the above is no. It just doesn’t matter. I still wonder and it still hurts and I will wonder forever.

I will wonder each time the kids ask me for a new brother or sister and I delicately remind them their Mom has no uterus.

I will wonder as my mother-in-law and I drive past a garage sale and she notes the baby crib on the sidewalk, and I almost open my mouth to apologize for not giving her more grandchildren…and stop, and turn my head, and pretend not to hear.

I will wonder forever if that total hysterectomy was necessary and if I could have gotten pregnant just one more time and if I could have had just one more baby to hold and to coo over and to raise.

Maybe if my life were different I wouldn’t sit here and wonder so damn much. Maybe if I didn’t have that husband who’s like UBERSUPERDAD, able to leap tall Lego structures in a single bound…and maybe if I didn’t have the most amazing, kind-hearted kids, who truly want nothing more than to cuddle with me. They just make it so damn easy. They make it only natural to wonder, because who wouldn’t want more more more more of this life? You’d be crazy not to.

But the truth is, I do not want to wonder for the rest of my life. It’s a torture of sorts to wonder forever.

So I’m choosing to stop wondering and moving on to just demanding the impossible:

I want my uterus back.