Queen of Spain Blog

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.

Spoons.

Spoons from across the world arrived in my mailbox today.

It is hard for me to put into words what this means to me. Some of you are probably saying… spoons? Erin… what the hell?

Adrienne explains, “Recently, FINALLY, after multiple surgeries (she lost 13in of her colon, her gall bladder, and her uterus, ovaries, and cervix) this year and so many emergency hospital stays, she received a diagnoses of Lupus.

One day on Twitter she spoke of ‘grabbing all the spoons’ she could because Lupus could #suckit. I had no idea what the heck she was talking about so I googled it.

WOW

Just WOW”

Of course Megan posted about it too, “Let me ask you one little question: If you could do something to make a person feel better – a person you could otherwise not help in her situation of unfortunate circumstance beyond her or your control – would you?

Think about it. We’ve all been there. We’ve all had someone in our life – whether a close family member or friend or perhaps it’s just someone we know through the blogosphere or Twitter world or maybe even it’s someone whose story we heard from someone who heard it from someone else… but somehow, it touched us, it haunted us, it made us feel helpless and it kept us scratching our heads and wondering What can I do? leaving us helpless because sometimes, in this life, we don’t always have the chance to fix things for others. No matter how badly we want to.”

And the next thing I knew a package of beautiful spoons were at my door.

I wept.

I thought I might laugh, or giggle, or maybe get misty eyed and tweet you all … instead I sat at my dining room table, kids around me, and I cried that ugly cry, reserved for those moments in life.

It had been a bad day. It had been a hard day. I started the morning teaching my Mom how to give me a chemo injection and was sitting at that dining room table feeling defeated because I was exhausted from going to the hair salon.

Again…I’m not sure you understand what this means to me. The timing. The symbolism. The everything.

My son rubbing my back, my daughter playing with the brightly colored spoons. And me…sobbing at the table, looking at a dozen or so kitchen utensils as if they were the answer to all my questions.

Spoons.

I wasn’t crying because I was sick. I wasn’t crying because I was so happy and the tears of joy came out.

No.

I was crying because I finally could.

After months of meals delivered to our door. Gifts. Visits. Virtual hugs, and the whole world reaching out to our little family just to check on us, I felt as though I could finally just let go.

Why?

Because I know you are there. These spoons tell me so. I can let go because you are there to pick me back up. I can let go because you have my back. I can finally let go because everything really WILL be ok if I let others help. If I let others lead. If I let my tired body heal and allow you to be in control. This is huge for me. This is not who I usually am. This is what needs to happen so I can tell Lupus to #suckit for good.

I have spoons.
I have everything.

And you have my very heartfelt thanks.