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.