I just spent a week in a wheelchair, where when people looked at me…I could justify being out in public. I could justify it because I had the chair. It meant that when they saw my face, they knew something was wrong…even if they didn’t know what. It was a symbol that potentially this person here isn’t right.

It was my crutch and my excuse that it was ok to be out with other people staring.

I need that crutch, because all I want to do is hide. I want to lay in bed and never leave. I’m trying so hard to not care, but every day my face gets more round and every day clothes don’t fit and every day I worry that even the people around me don’t want to look at me anymore.

Even the kids are wondering when I will be ‘regular’ again. And I don’t have an answer.

Tonight my daughter wanted to play dress up for the Oscars, putting on her fancy dress and asking me to do the same. Of course I have nothing in my closet to fit my current frame…so I found a wrap dress that didn’t fit but at least could act as a robe of sorts to make her happy. We added earrings and necklaces and she very sweetly looked at me and said ‘when will you fit into your pretty clothes again, Mommy?’

I’m not sure honey, but we’re happy I’m not in the hospital. And I can get other pretty clothes. Besides, look at how big I am smiling at you and how much fun we’re having. Who cares what we look like- we’re STUNNING.

And she loved that word, and repeated it back to me several times as I tied her bow.

Stunning Mommy, yes we are just stunning.

But inside I wanted to crumble. I didn’t feel stunning. Which made me angry. Angry that I care so much, angry at this disorder. Angry that I feel embarrassed and humiliated by how I look. So I did what only I know how to do- suck it up, be brave, take control. And I tweeted a photo of my face. And then I tweeted a photo of my daughter and I. I FORCED myself to show this monstrosity of a body to the entire world so it was impossible to hide. I gave myself zero shelter so I could face this stupid vanity issue head on.

And of course many of you were very kind, telling me how beautiful I looked and what not. And I truly appreciate your efforts. Of course my point wasn’t to win compliments to make me feel better, it was to make sure I couldn’t crawl back into a dark corner and not emerge until this steroid treatment was over. Because I want to crawl so badly into that corner. I want to hide under my covers and cry and stay there until this is over. I don’t want to see anyone. I don’t want anyone to see me.

I don’t want them to see how I struggle to walk, feeling every new inch of my body as I move. I don’t want them to see my protruding stomach, and how no matter what I try, I can’t hide it under ruffles or baggy shirts. I don’t want them to see my double chin, and worse yet, to see how it spasms when I yawn…another nifty side effect of the meds i am taking.

I am a grown woman and I know full well that none of this matters. I blogged it already, we’ve discussed vanity at great length. And I’ve heard everything from what I am teaching my daughter about beauty (and believe me, she will have no idea the struggle I have with this until she is old enough to read my blog) to letting my inner beauty shine to letting go of this notion that any part of my worth should be wrapped up in how I look.

And I can be brave, and show the world…but that doesn’t stop the world from looking. And I know the world is looking. And judging. My bravery only goes so far though. My insecurity kicks in somewhere around ‘SCREW YOU I WILL SHOW YOU’ and ‘I DON’T CARE WHAT ANYONE THINKS!’ so I push it further and I sit here and write. I write honestly, and without censoring, and with tears streaming down my face for the fifth time in the past hour. I just watched a parade of beautiful women in amazing gowns, and more importantly I watched men glare at them…as they should.

Let’s face it, men aren’t going to glare at my inner beauty right now. Something that is thankfully lost on my daughter as she repeats to her brother that we’re having fun and that’s stunning.

Something I am striving to teach her, and will hopefully believe before this is over. And until then, I’ll just continue to be brave so hiding isn’t an option.

I didn’t send out our Holiday cards this year. There were about 400 million reasons, from my hand cramping while trying to write your address to me just being lazy. But I’m sort of mad I didn’t, because I need you to see me. See me as I am. As I am, right now, if I need to do anything that would require more than a walk around the block.

I need you to see me in a wheelchair.

We haven’t purchased one. I don’t use it on a daily basis. But more and more often, I’m finding myself using one. And I need you to see me.

I need you to see me, because when I’m in this chair, and my husband is pushing, and my daughter is riding on the back and my son is holding the arm on its side- you don’t see me.

You walk right in front of me, causing my husband to quickly slow down so he doesn’t run into your legs. You bump into the side of me, while I look at a map. You knock over my kids’ very first Butterbeer at Universal Studios Orlando because you didn’t seem to notice the woman in a wheelchair sitting in the shade, laughing with her children.

You even fail to say sorry when you cut me off as I am using all my might to wheel myself through a store and you rudely lean against the wheels not noticing there’s someone IN THE CHAIR.

I realize many of you are simply looking forward. Walking. Walking in a crowd and looking straight ahead and not looking down.

You don’t see me.

I’m shorter than my son sitting in this chair. So I find it funny you don’t seem to trip into him, yet can totally slam into me without notice, but maybe it’s because I’m not making as much noise as a child. Hmmm.

Then, of course, there are those of you that do see me.

You’ve given me dirty looks, wondering why this large woman with no visible illness was being pushed to the front of the line. Of course having no idea if she was just being lazy, or if she…say, has had multiple organs removed from a disorder that is ravaging her body and has gained weight from a very, very high dose of steroids to save her life. We know you just assume I’m lazy…but let’s just pretend it’s the other reason.

You’ve also kindly held a door for me. And have looked me in the eye as you pass. Some of you have even smiled. For that, I thank you.

Which is why I need you to see me…because too many of you don’t.

It’s just never been my thing.

I’m just not the type to hear a friend or family member could use some support, so in return I pin on a ribbon or slip on a colored bracelet. In fact, I will actively avoid doing that because it felt like lip-service.

I’d rather quietly make a donation. Or send a gift that, in turn, supports the cause. And it’s not that I don’t like those ribbons and those bracelets, they just were never what I would choose to do…and I honestly don’t know why. It felt commercialized maybe? Too much Lance Armstrong yellow? Too many ribbons pinned on suits, one for every color of the rainbow that meant every different disease ever discovered?

Then a very innocent package arrived at my house. Information from the Lupus Foundation of America. Great information, actually. Enclosed were four purple bracelets.

I didn’t think much of them. I really didn’t. I set them on top of the tv, read the info I was mailed, and went about my day.

As the day went on, and I kept walking by the tv, my eyes kept wandering to the stack of purple.

Well, I can wear one. I mean…I’m the one with Lupus, and that purple is a really nice purple…
Nah, I already have my spoon bracelet from my husband…people may have no idea why I wear spoons but I love it and it’s beautiful and the point isn’t for other people to know…

Or is it?

It took me about five hours to finally slip on the purple bracelet. And it took me about 12 more hours to totally forget I was wearing the bracelet and life went on as normal.

Until a few days later.

The stack of three purple bracelets now perched atop the tv. Not exactly gathering dust, but just doing what many things do in our house- take up space.

Sitting in my usual spot on the couch and tap tap tapping away at my computer my husband casually walks to the tv, very unceremoniously grabs a bracelet, and slips it onto his wrist.

He doesn’t say a word. We do not exchange glances. He goes about his day and I go about mine…somewhat.

I say ‘somewhat’ because I won’t lie, I didn’t just go about my day normally, I went about my day with my head held a bit higher. Was it the bracelet? I mean, why on earth would that affect me so much? He supports me every second and we all know it…why on earth would that bracelet on his wrist make me feel so very good inside?

And the next day after his shower he slips on the bracelet and heads to work.

And the next day.

And the next.

And the next.

You get the idea.

And then today, I see him check that it’s on as we get on a plane to take a much needed family recovery vacation. A chance for us to gather ourselves after this trying time. Admittedly it’s not an easy trip with me in an ‘active’ Lupus flare and children clamoring to see Mickey and Harry Potter.

We stroll through LAX and Orlando International Airport and the thousands of miles across the country, sporting our purple bracelets. Sporting them with something I clearly did not understand before, but get so very, very easily now:

We’re doing this together. Mind, body, soul…together.

But I knew that. We’ve always been doing this together… why on earth would a damn bracelet make me feel it so much more? That’s ridiculous. I’ve never, not for one minute, felt as if he wasn’t there with me every step of the way. I’ve never needed a bracelet to tell me.

But oddly, that is what those damn ribbons and bracelets do. That is what I failed to understand this entire time as I passed over wearing one for some other cause, or decided instead to send that quiet donation. It’s not that you wanted to show support for a cause or wanted to spend your extra $S on curing a disease. It was that you and I are joined in this fight- and the whole world knows it.

As he pushes me in that wheelchair around Disney World, and people stare (and let me tell you-they stare) they will see us both in our purple bracelets. And it gives me a sense of pride. Almost like a big billboard screaming ‘I am in this fight with my wife, she has Lupus and we WILL find a cure.’

Maybe that’s lame. Obviously I don’t need a purple bracelet to feel the tremendous support I get, but I do need it to prompt you to ask me why we are wearing them. I do need it to act as a conversation starter so Aaron and I can tell you about my disorder and what it’s done to my body. I do need it to act as that billboard for Lupus awareness, because if you were anything like me a few short months ago, you were saying ‘What the hell is Lupus?’

And yes, I do need it on those days like today, where I traveled cross-country swollen, sore, and horribly achy-determined to get to our destination. Because honestly…one glance over at my husband, proudly wearing his purple Lupus bracelet and I was re-energized for the fight. It was a visual reminder of the strength he gives me every day and it had me holding my head high, despite my body wanting to collapse, giving me that extra oomph to go on.

And on.

And on.

I’ve been closing the bathroom door while I dress so my husband can’t see me naked.

I spent 35 minutes on the floor of the department store, crying, while picking needles out of the weird, hard, zig-zag carpeting…devastated over the reflection I saw in the mirrors surrounding me.

I couldn’t escape her.

After twisting and turning and over-extending my bruised neck like a maniac to avoid her, I picked myself up and tried on extra-large shirts, extra-large pants, and faced her head on…sobbing.

Her…the whore. The Lupus whore that continues to take, take, take.

She who has claimed every inch of what made me feel sexy, what made me swagger, what made me woman. Uterus, ovaries, cervix…that ass shake when I walk in my thigh-high boots. Gone. All gone. Taken by her.

Lupus has left a swollen, puffy, just thankful to be alive shell of a female in its place. And there I was, actually sitting there, on the floor, wishing I could lose another organ instead of go through the humiliation this current body brings me.

Because of her.

The drugs we are using to keep me alive have utterly destroyed me. The side effects make me feel worse than the disorder. I was never this achy. I was never this uncomfortable. I was never this tired. On 60mg of prednisone, a very powerful steroid, I have gained about 50lbs since December. I have a double chin, a swollen and protruding stomach, and for fun…you can now see the bald patches on the back of my head, a souvenir from when I was 119lbs, near death, and losing my colon and gall bladder to her.

It’s sick and sad and horrible, but I would rather be losing hair again than live in this stretched body. I would rather lose more organs than have to endure the embarrassment of seeing people who don’t know why my body looks this way.

I feel like an asshole typing that, but it’s true.

Of course, I calm myself down, wipe away the tears, and actually get my fat ass up off the department store floor. Because I realize these drugs, these nasty, horrible, strong drugs, have protected my vital organs successfully. That was our goal. To stop Lupus from taking anything else.

I would say we’ve half succeeded.

Yes, we have successfully stopped Lupus from taking additional organs. With aggressive steroids, anti-inflammatories, anti-malaria, chemotherapy, and now multiple procedures to inject drugs directly into the inflammation creeping up my spine and to my brain- we have, in fact, succeeded in stopping Lupus from taking anything else.

Except my pride.

I’m not really recognizing myself in the mirror these days. The months of meds are starting to take their toll, and the “moon” face that often accompanies high doses of the steroid prednisone is now full-fledged and looking back at me.

I just went from the thinnest I have ever been, to rounder than I have ever been and it’s hard. I’m not going to lie. It’s really hard. I realize it is saving my liver. I realize it has kept me out of the hospital. I realize it is all very necessary right now, but dammit if it’s not really, really hard to LOOK like this round-faced sick person. I was just buying those really cute boutique clothes I usually don’t fit into. Like- just a few months ago. I liked that.

It’s funny what illness does to your head. You go from just wanting to feel good, to just wanting to live normally, to just wanting to LOOK normal…which in the grand scheme of things should NOT be important. But when sickness robs you of so much, some days you just want to feel pretty.

Lame. I know.

But when your whole life is upside down, and you don’t even feel like yourself in your own skin, feeling pretty really can work wonders. And right now I do not feel pretty. I do not feel like me. I do not feel like a woman who is desirable or wanted or hot or even slightly cute.

I look like all those sick people at the hospital, hopped up on steroids, round cheeked and fighting a battle. And I can talk all I want about how what I look like right now does not matter, so long as I am winning…but I’d be lying.

It does matter.

I care.

And I know I shouldn’t.

I just want me back in so many ways, and feeling fat and ugly robs me of even more dignity. Even MORE humiliation from this crap ass disorder that keeps taking so much.

I know it won’t win. I know it is temporary. And I know I will get back to being myself. But damn if I can’t stop thinking about how I will cringe as I see people I have not seen in a while. How I will cringe when we look at photos from our family recovery retreat planned for February. How I cringe as I try to do my hair that is thinning, how I cringe as I try to hide the dark circles under my eyes, how I cringe as I try to fit into pants that fit only a few weeks ago.

Lots of cringing going on here, because I feel so damn ugly. So not myself. So very, very, very round.

But then, as always, my support system props me up. And reminds me to shut off that part of my brain.

My husband texts me to tell me I am, and will always be, his beautiful bride.

My son pets my round cheek with his soft hand to tell me he likes me better this way, because my smile is bigger.

And I exhale, and try to remember it does not matter.

What matters is I keep winning.

Winning is the prettiest of all.