When you're chronically ill and unable to work, go to school, have children, and/or go out and about, you tend to have a lot of time on your hands to think. The fortunate part of this, at least for me, is that my thinking comes out in the form of either 1)journaling, 2)novel-writing (or, editing, as is the case now... yay?), or 3)conversations via email (or sometimes in person) with friends and family. I haven't lost everything contained within this skull of mine just yet, despite the illnesses and medications rambling around in there.

But one of the things that I think a lot about on my own is about how REAL sickness is. That seems like a funny, empty thing to say - clearly, illness is real. I know mine are. I didn't just make up Lupus, or arthritis, or Fibro. And when normally healthy people get the flu, they tend to REALLY be sick (unless they are looking for a day off work:) But people who have been labeled as chronically ill or disabled don't just make this up for the fun of it.

Or do they?

( To be sick or not to be sick? That is the question. )

mood: contemplative tags: arthritis, doctor, fibro, friends, health, lupus, my life, pcos, people are stupid, sick

... I have hair again :)

The two wigs arrived just shortly after 4 pm today (well, technically Wednesday), and I was nervous upon opening the box. I had no idea if they'd fit, if they'd look real, and if I'd like them. So I pulled them out, ran into the bathroom, and tried them on, albeit with a sense of trepidation.

And I LOVED (love!) both of them. I was shocked by how much I loved them. I didn't think I would feel so relieved to have them on my head, but suddenly, things don't seem so damning. I mean, the illness is still damning - hair doesn't take away the fact that autoimmune illnesses are eating up my body - but I don't feel so UGLY. I feel - OK, now. Better.

I posted the pictures on Facebook about two hours ago, and was shocked by how many people thought I even looked good without hair. So below, I'm posted a few pictures of me without hair (well, there's like 1/2 an inch left...), and then, a few pictures of each wig. Then, I think I'll have to put a few more wigs on my wish list (goodbye, more Christmas money, haha...) so that I have more options to choose from soon enough! I like that I can change how I look within a minute. It's strangely liberating, and since I was told I'll be on the MTX until at least February now (another 10 weeks), I may as well buy one or two more.

Anyhow, pictures! I hope you all like them:

( No hair, long hair, short hair - it's all here :) )

So really, I lucked out. The wigs look decent, I am starting to accept the shaved head look, and overall, I just feel better knowing that I have more options. It won't cure me (I wish it could), and I know that my hair is still going to fall out a bit more, but again, I have options. So although it's still hard, and I still miss my natural hair desperately, I think I can live with this, and - sickness aside - be happy with my choices.

I still think I'll buy a few more wigs, though. Might as well change things up while I have the chance (before going back to dyeing my hair all the time:)

Thanks again to everyone who has been supporting me throughout all of this. Again, your comments, messages, texts, letters, photo comments, everything - it's all helped a lot. Hopefully, soon, I'll start to feel better physically, even just 10% better, and the worst of this will all be a bad memory. Hopefully, as terrible as the MTX is in my body, it will do something to help kick the Lupus into remission, and I can have a few good hours a day back once more. I want that more than anything. I miss my LIFE.

Plus, I have to be able to go out and wear these wigs in front of other people, right? I definitely plan to rock the black and blue one to PT soon :)

mood: exhausted tags: appearance, friends, hair, hair loss, lupus, mtx, pictures, wigs

It started off easy. Toby took the new, professional hair trimmer to my hair - not that there was too much left, anyhow - and asked me if I was ready. I smiled, nodded, and said yes.

Then, it fell. Clumps and clumps of brownish-blond hair fell around me, like dirty snow.

At first, it was funny. The buzzing of the trimmer against my head amused me, and just the whole notion of what we were doing was, in some perverse way, hilarious. I mean, it's just hair, right? In January, it had nearly been down to my waist. In June, it was shoulder length. It's been blue, red, blond, brown this year. I am no stranger to change.

And then the Methotrexate took hold - a change I wasn't ready for - and it started to fall on its own, breaking off into chunks every time I touched my head, or falling out cleanly in the shower. So, proactively, we said goodbye to what was left of it tonight, and let the trimmer do the rest of the damage before I could watch any more of my thick hair come out in handful-sized clumps.

We wanted to make it as even to the bald spots the MTX had created as possible, so, after 25 minutes of buzzing, trimming, and touching up, Toby was finished. And there, in the mirror, was a girl I no longer knew. I smiled, because I was too numb to cry. I ran my hands over my head, over the 1/2 inch of hair that remained. It felt funny. We took pictures of how much hair was cut off, of my new look. I put on what tanaearanduril jokingly refers to as my "Hemingway hat" and held an unwrapped cigar to my lips.

"Look, I'm like a female Fidel Castro!" I said to Toby.

"Yeah, if Castro were hot," he joked back.

But I didn't feel hot. And I don't feel hot now. In the shower, letting the water hit my scalp - a scalp that was bare for the first time since I was an infant - I didn't know what to think. I tried to be positive. My wigs are coming, I thought. Hats look cute on me. It's winter, so knit caps are an acceptable look right now. But as I felt the water hit me, I knew - something within me had changed.

When my hair fell to the ground, I fell, too.

Down to the earth I fell,
with dripping wings,
heavy things won't fly...

All of my hair is gone now. I'm not bitter - I don't curse the Lupus, or the other autoimmune illnesses racing through my body, illnesses that seem to be progressing, not going into remission. I don't curse the Methotrexate for causing this terrible side effect. I'm not bitter, and I'm not mad. I'm not the first person this has happened to, after all, and won't be the last. This isn't the end of my life, and my hair will grow back, in time.

But I am bone-chillingly numb. The only moment that broke my numbness was when Ritty, my little baby cat, wouldn't come nuzzle up on me. Since the moment I took her home with me, back in 2007 when she was just 5 weeks old, she's always climbed up on me, rested on my shoulder, and kneaded into my shoulder and hair. My hair was her fur. I was her mom.

Tonight, she climbed on me, purring, kneading, and went up to rest on my shoulder - and recoiled. She looked me in the eye, and climbed down. I've not seen her since.

So I am now numb, with random shocks of devastation. It's all a matter of perspective, I know. Again, worse things have happened, to both myself and others, and I shouldn't feel so much pity toward something like my appearance. But without my hair - one of the only things I truly liked about my appearance - I feel very naked, vulnerable, exposed. I feel less feminine, less attractive. And seeing so many ads on the television for shampoos or styling products - ads featuring beautiful women with thick, flowing hair - just makes me feel worse. It's not that I want to BE them. It's that they are healthy, and their shining, beautiful hair shows that.

But above all, looking this way is a huge slap in the face, simply because if I weren't sick, I wouldn't have had to have shaved off my hair. Again, I'm not bitter at the illnesses or the medications. I'm just devastated that it's simply because of illness that all of this has happened.

Two years ago, I wouldn't have believed I'd be sick enough to lose my hair, to be practically housebound, to be in constant pain, to know my body is literally being eaten alive. Two years ago, I would have laughed at the notion of not working, not going to grad school, not planning for a family. I would have, instead, run my fingers through my long, thick hair, and gone about my way, knowing I was fine.

I was naive. And I am not fine. I have so much support, so many kind friends, my family, my amazing husband - and I am still not fine. THIS is not fine.

If I muster up the courage, I may post pictures of how I look now. Once the wigs arrive, I'll definitely take pictures, but until then - I feel too vulnerable to share how I look with anyone. Even my reflection in the TV screen makes me upset.

Am I me anymore? Yes. And no.

Suddenly, at 28, I don't know who I am.

By the way, I'll be taking my first (and probably my only) bye over at therealljidol this week. Apologies to my tribe members, and to those who actually enjoy reading my entries. I just - I don't have it in me right now to write anything beautiful or moving or profound. I'm sorry. I want to write, but have nothing else to share. I think I just need some time to deal with these changes.

I keep seeing my hair, the strands of my hair, falling down around my shoulders, gathering upon me, light as feathers, soft, glistening in the bathroom light. I see them, and I am filled with words of longing and loss that have yet to be created.

My defenses are down. Tonight, I am weak. And I am just so cold that I, at this very moment, barely feel alive.

mood: numb tags: beauty, friends, hair, hair loss, lj idol, medication, mtx, my life, toby, wigs