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.