There are mornings where I wake up and I just can’t do this anymore.

I do it for my kids. I do it for my husband. I get out of bed and I pack lunches and I leave the house for not one, but two doctor’s and not one but two IV’s. I will do it again next week. And the week after. And the week after.

To say we’re sick and tired of this is an understatement. Tired of talking about it. Tired of doing it. Tired of living it.

I want to pretend this is not my life for just a little while. I want my kids to feel normal. I want my husband to feel normal. I want my house to be normal.

I want to wake up and feel normal. To just go about a regular day like a regular person.

This week my Lupus doctor told me I was a “very sick lady.” He’s protecting my vital organs and trying to make me comfortable- a feat any doctor has yet to accomplish without very strong narcotics.

I don’t try to sugar coat this disorder to myself or my family. I’m lucky to still be here and I’m lucky treatment is working “just” enough to keep me alive.

But I need it to do more.

Maybe that makes me greedy. I don’t really care. It’s my life and I will be greedy if I want. My children need a mother, my husband needs a wife and I will be as fucking greedy as I damn well please.

But I am tired of waiting.

I want to go back to work. I want to go back to life.

Instead I will go get another IV. And wait. And wait. And take my good days where I can get them and do everything I am told, which pretty much includes a whole lot of sitting. And resting.

I’m tired of resting.

Restless doesn’t even begin to cover it.

I guess it’s sort of like being political and continuing to get into political debates. It’s exhausting. It’s never ending. And after all is said and done you’re not really sure anything changed. But you HAVE to keep fighting. You know what is right and what is good and what is necessary and you just HAVE to keep going.

Forgive my complaining. It’s just been one of those stretches around here. It makes me angry. It makes me yell and write and whine.

It also makes me buy new garden decorations:

I just need to moon the world right now.

My mother-in-law came to town and I didn’t clean a damn thing. She was seconds away from walking in the door, and I sat up in my bed, knowing full well what my house looked like downstairs.

Luckily my husband had picked up a bit, but I knew the toilets were not clean, the carpet unvacuumed. Rotting wet-cat food on a plate in the garage, and don’t even let me get started on the putrid, green aquarium.

But it was ok. I just left the hospital. I had just endured another iv of drugs. And I sat there telling myself it was OK. It really was.

But it wasn’t.

It really wasn’t.

I’ve never been unable to at least pick up the house before my INLAWS came form out of town. Never. Even before giving birth to my second child I managed to make sure things were clean.

Go ahead and laugh at me. I don’t care. I’m the person on her hands and knees scrubbing the kitchen floor before guests arrived and who will do anything to get you OUT of my house if it’s not picked up. Well, I used to be that person. Then I had to learn to let go.

This hasn’t been easy.

Being very ill makes it easy…not cleaning on those days comes with no guilt. But on the days I feel good it’s all I can do to NOT go on some crazy, anal, cleaning spree and organize my entire house. But I know I can’t. I’ll pay for it tomorrow. This creates more work for my husband. More guilt for me. It’s a crappy situation.

So there I sat, in my bed, listening to my mother-in-law walk in the door. I sucked it up, walked down stairs, said hello…and not so secretly looked around and hoped I didn’t look like the biggest failure of a wife and mother ever.

Of course she’s been wonderful, cleaning and cooking and what not. Keeping very busy in my very messy house. It kills me a little. Ok, it kills me a lot.

But at least I’m here to watch.

If you let your child get purple streaks in her hair…the ladies at the salon will gossip.

If you tell them it’s for Lupus Awareness month…they will skulk off and slouch under their hair driers and continue to gossip.

If you give them the stink eye right on back…while getting your own purple hair…they will avoid eye contact and awkwardly leave the salon in a hurry.

Tomorrow is World Lupus Day. Sign the pledge. Go purple.

At first, I couldn’t click.

I saw the post making the rounds on twitter. It came in an email thread. It was shared on Facebook. Derek Miller had died and most found out via a final post he had written, to be published upon his death.

I didn’t know Derek, but by all accounts he was an amazing man. So my reasons for not clicking didn’t lie in my grief, though I certainly felt for his family and friends.

It was because I have written and rewritten and started and stopped a version of the same post…many times.

A death post. A final post. A post to be published upon my demise.

I am guessing anyone with a chronic or serious illness has done the same. I am a writer at heart and I can’t seem to help but put these things down…out of my head and in letters and sentences and paragraphs.

But I have never finished my death post. I told my husband it ‘s because it felt like giving up. Finishing that post means I really think it is coming. Or it might happen soon.

Maybe it’s naive of me to leave it undone. Maybe if I start going downhill quickly I will regret not having finished my good-bye to the world.

Maybe I will finish it when I feel it’s time. And give instructions to my husband on how to hit ‘publish’ as he makes my funeral arrangements. Maybe it will be part of my funeral arrangements.

It will never cease to amaze me how many people I have met, bloggers, who lay it all out there for us to read. I’ve found myself going back through Derek’s archives as he chronicled his illness and battle. I think of my friend Gregg and how he tweeted and facebook’d and shared his photography before succumbing to cancer. How the raw emotions would come out in status updates. Both of them taking friends, family, readers through the highs and lows of life as it wound down and eventually stopped. It was beautiful and heartbreaking.

But my final post, much like my life, remains unfinished.

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.