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.