Ah, but it’s not as glamorous as it sounds!

I first started getting sick when I was around 18. Weight loss, fatigue, gi problems, severe torso pain. But I looked healthy, my (basic) blood tests had normal results. Stress, hormones, “it’s just in your head,” school, parents — these were all blamed for my complaints. So I practiced yoga, walked a lot, exercised, took antidepressants, saw a counselor, learned & practiced relaxation techniques, changed my diet. I did everything I could to feel better. I avoided alcohol, never experimented with drugs, always followed doctor’s orders. Still I didn’t get better.

Once in a while I’d get a doctor who’d say, “Some of your symptoms sound like lupus. Do you get a rash on your cheeks?” No, I’d say, and they’d dismiss the idea. But the fact is that only about 30% of lupus sufferers get the infamous butterfly rash.

Eventually, I got a great primary care physician who had a plan. Keep track of all my weird symptoms and one day we’d have a bigger picture of what was going on. The problem was that I didn’t have enough symptoms at one time. Finally and horribly, after getting sunburned at a family reunion, I starting exhibiting a lot of symptoms and fast:

• extreme fatigue
• weight loss (about 20 lbs in two months, bringing me down to 102 – 104 lbs)
• hair loss
• severe diarrhea
• sensitive gums
• terrible pain
• muscle and joint pain
• joint swelling
• lower back and hip pain = limp
• sternum pain
• sleeping issues
• cognitive difficulties (including inability to read)
• anxiety and depression
• skin pushing back, away from my fingernail bed
• difficulties walking, opening things, writing, holding a pen, brushing my fatigue
• balance issues
• anemia
• positive ANA and anti-dsDNA antibodies

I was completely knocked out and hurt everywhere. I was sent to a rheumatologist. “Maybe I’m just crazy,” I said. “Maybe you are,” he replied. “But I think something more is going on.” So he ran all the necessary tests, went through my medical history, and within two weeks I got my diagnosis: systemic lupus erythematosis.

That was in 2006 — almost 10 years after I first started experiencing symptoms, two years after my fateful sunburn. On average, it takes four to nine years for a diagnosis. Yes, this makes me angry — especially since lupus has a higher rate in women and women of color; however, rather than have me take the ANA panel test, it was easier for the doctors to give me a diagnosis of the hypochroniac, the hysterical woman. I will be forever pissed off about this  - especially because it’s made me DOUBT MYSELF. Plus, my treatment could have started earlier and I could have had some semblance of a life in my late 20s.  That issue I’ve dealt with and mostly moved on from, but I don’t feel bad about holding a grudge.

So, it’s been four years since my diagnosis. I’m 35 now and I wonder where my life has gone. Lupus has devoured it. Even with a diagnosis, there are few treatments and some are very harsh. The physical symptoms have affected me emotionally and mentally. I’m not sure where to go from here, but I guess I have to keep on going.

Today, millions of people across the US are wearing purple to bring awareness to lupus and lupus education. It’s a small thing, really, but to me it matters. It matters that for at least one day, people I know and don’t know are taking notice of this awful, sometime deadly disease. Lupus is called an invisible disease for a reason — most of us who have it look healthy, which makes it harder for people to take us seriously.

Several stories in my flash fiction collection deal with this directly and indirectly. The cover is purple because of lupus. I’m not ashamed to have lupus, but neither do I find meaning in it. What it has done is make me more aware that millions, billions in this world suffer physically. It wasn’t until I suffered from constant, crazying, severe pain, that I even began to understand the pain of others. It also made me know that I NEVER want to inflict physical pain on anyone.

I feel like I’m sort of meandering here. I have brain fog today. Didn’t sleep well and I’m dealing with an insurance company that won’t let me have a medication I was on for four months. A medication that changed my life and gave me hope that I could go back to work, a medication that costs $1000 a month for the generic! I have to say our health care system is about as fucked up as it can get. It’s a system of profit, not a health system at all and definitely not about caring. A system where some paper pusher gets to override the recommendations of a neurologist, rheumatologist, and sleep specialist because they don’t want to pay for the high cost of my medication. Yet, WE pay them. We are the customers but we are always wrong and so are our doctors.

Since I don’t feel I did a great job of educating you about lupus, please check out the Lupus Foundation of America. I’m not asking you to donate, although that would be amazing, but just to read through the information and ask yourself how many people you know who might be walking around with this invisible illness, too ashamed or scared to share what they’re going through, afraid of losing their job and what little health insurance they may have.

After my diagnosis. About six months into treatment with Plaquenil & starting to gain back weight.

Invisible Girl and Other Stories at Amazon

I’m hoping a Kindle edition will be available soon. I’m also hoping you or someone you know will purchase a copy. The cover is lovely — designed by Ian Cavalier, a friend and super-talented guy. The book itself is short. About 75 pages, slender and light. No table of contents, just one story turning into another.

I’ve made a separate page for the book, just click on Invisible Girl and Other Stories. There, I’ll list where you can buy the book, plus updates and reviews.

http://www.etsy.com/shop/PalabrasdeMaria?ref=si_shop

Here’s the link to the book on Lulu:

Invisible Girl and Other Stories

Cover design by Ian Cavalier.

A harsh wind blew me down one night. And then, crack. My bones broke, my body bulged. Taller I grew until I was a giant’s giant! The stars sang. I plucked one from the sky, ate it, and then another. Soon I was full of stars: my eyes exploded with light, my heart burned to ash, my mind turned silent and, finally, finally I slept in the heavens.

Beautiful art print by http://www.etsy.com/people/dkim, which I hope to buy soon.

Little story by me.

God, I cry just looking at this picture.

I remember ordering music videos on VHS and zines listed in free newspapers. I remember my friend and I never managed to put our own zine together but we’d write letters to the kids who made them so they’d know someone read them. I remember writing poems about Vincent Price and a certain boy’s Levi jacket. I remember it smelled like cigarettes and teenage boy musk and pigeons. I remember when he told me about pigeon keeping. I remember wanting to sniff his neck and lick his face, but the closest I ever got to him was a handshake.