World Lupus Day 2012: It’s Complex

I have mixed feelings today. My emotions are all over the place for a variety of reasons, not the least of which is I am making progress in my fight.

But with that progress have come so many casualties I feel like I would have rather of lost more organs or had another stroke. Celebrating seems out-of-place when so many around me are hurting from the wake that Lupus has left.

Don’t get me wrong, we will celebrate eventually. It’s just not time yet. I’m only beginning to feel better. beginning to be stable for more than a month here or a week there. Celebrations seem to be for people who have this shit so far,far past them they can’t even manage to see it in their rear view mirror, the lights faded into the darkness. So far past them it’s turned off some other road or path, leaving Lupus far, far behind and lost on the side of some unmarked road, hidden and tucked away behind some trees and bushes.

It’s more like we’re still working hard to stay ahead of Lupus while it revvs it’s engine, ominously, reminding us all it’s there and ready to slam it’s foot on the gas and flatten us from behind.

Yet we keep steadily pulling ahead. And it keeps steadily falling further back. Slowly. So slowly.

I wish I could say life has been kind as we push forward, gaining distance from this disorder. We haven’t been that lucky.

The bureaucracy that is long-term disability has been nothing short of a nightmare. My doctor has declared that I am unable to work, he’s made it clear – down to the number of hours I can spend sitting here typing. Down to exactly how and when I can drive, travel, shower. Even walk.

We’ve sent lab result after lab result after MRI after MRI. We’ve sent them my doctor’s 30-years of treating patients and how he’s using ME as a chapter in his next book due to the nature of my case. We’ve sent them every drug I am on. We’ve had my neurologist send over my stroke information. My pain management doctor sent over the nature of the narcotics I need- and why that alone should keep me on my butt, and out of the board room. And I say this with every hesitation in my writing because I WANT to work again, and soon…but I now spend an average of three out of five days a week at one doctor or another, and some of those days I am hooked to an IV for anywhere from three to six hours for treatment.

…and I’m supposed to work WHEN, exactly? Between IV infusions and between doses of methadone? Or should I be taken off all of these things I need?  Someone should ask the private insurance company still deciding if I’m ‘disabled’ because they either don’t understand Lupus or the variety of other conditions that come with Lupus or they do understand and just want me to see ANOTHER DOCTOR for a FIFTH opinion anyway. Here, take a look at my calendar. This is April:

You tell me when I can just go see one more doctor…maybe a weekend? Or maybe between IV’s?

Yes, we filed in November and while they have just made the decision to pay me for my ‘waiting’ as they continue to decide on my ‘complex’ case…I get to see another doctor at their request. Because the MOUNDS of paperwork and files and test results aren’t nearly enough for them. Along with my treatments and doctor appointments and my attempt to still be a Mom and a Wife, I’m going to go see a doctor who will see my file…which is the size of your average small car…and apparently try to wade through all 400-thousand pages in one appointment and do what the private insurance company’s doctors have been unable to do since November.

Yeah. That makes a ton of sense.

My point with all this rambling? It was up there hidden, actually, in all my whining.

‘Complex’ … Lupus is terribly complex. It’s never the same in anyone. And I’m not sure society as a whole is taking it very seriously- because they don’t know much about it.

The African-American community seems to know a bit more, because more African-American women are affected by Lupus. Just another reason Maria can call me a sister.

If only it were that easy.

But with this sisterhood comes an attack on every organ imaginable. Kidney failure. Strokes. Heart attacks. Lungs, joints, skin…I can go on and on.

According to my friends at the Lupus Foundation of America an estimated 1.5 MILLION men, women, and children have Lupus in the U.S. But overwhelmingly those with Lupus are women in their childbearing years (that would be me) which SEVERELY disrupts family life (that would be us).

Lupus costs more than $31 billion each year on health care (I’m guessing I’m at least a billion of that) and lost work hours (again, me too). But Lupus research is so UNDERFUNDED relatives to the number of lives it affects. There has only been one new treatment in more than 52  years.*

ONE NEW TREATMENT IN 52 YEARS.

Add to that how this private insurance company is treating my case despite the mountain of medical evidence, my missing organs, and body’s response to Lupus treatment (which is now making progress) and we have a culture that not only doesn’t take Lupus seriously, but doesn’t even fund the research needed to stop this horrible disorder from destroying more lives. More families. Taking more Moms from their kids. Wives from their partners. Daughters from their parents. Loved ones from their friends.

So on this World Lupus Day, yes, of course I want you to donate. But more than that…I want you to tell someone about Lupus. I want you to teach them. I want you to show them. I want you to spread the word. I want you to say listen…I have this friend named Erin. She loves her family. She even LOVES her job. She wants so badly to be back doing what she does best, she can’t even stand it…but Lupus has been standing in the way. Wait… what’s Lupus you say? You’ve heard of it but don’t know?

Lupus is a devastating, life-diminishing and life-threatening autoimmune disease that has a great impact on vital organs of the body including the heart, lung, kidneys and brain as well as the skin and joints. 1.5 million Americans have the disorder, including ME.*

People need to learn more about Lupus so they can teach others. When they see how I look right now, they will understand that I’m not ‘fat’- I am full of life saving steroids. As are millions of other Americans. We are fighting not only the disorder that attacks our bodies, but also (in many cases) our insurance companies, our disability providers, even our mortgage lenders. Because no matter how much money you save and no matter how good your insurance is and no matter how wonderful your employer may be- you still have to pay bills, buy groceries, get kids to school, make lunches, and even be expected to live a ‘normal’ life. Why? Because you don’t look sick. Sure you have puffy cheeks and this odd weight gain around your gut, but maybe you just ate too many Cheetos.

If only they knew you’ve been living off green tea and olives and goat cheese and freshly squeezed juice from your kids with the occasional Blow Pop as a reward on treatment day, because sometimes an IV in your arm three days a week gets really fucking old. But hey, you LOOK like someone who could be fine if she just ‘took care of herself’ – if only it were that simple.

Instead I take steroids, and narcotics, and infusions, and I get permission from my doctor to finally be able to walk my dog to the end of the block. That’s four houses. Whoop dee do, look out world. I might get my body back by 2022 at this rate.

So use this World Lupus Day to explain to friends, family, your Starbuck’s barista, your ex, your dentist -anyone, everyone. Tell them there are over a million Americans who walk among them daily with this disorder that causes horrible pain (imagine feeling like you have the flu every single day and your can’t even lift your arms to shampoo your own hair) and takes their organs and sometimes their lives. Spread the word. Because as my disability insurance company says, Lupus is ‘complex’ but it is also fairly simple: it sucks.

And the more we talk about it, maybe the more people become aware, learn, and we just might find a cure. And that would suck a whole lot less.

*All info taken from the Lupus Foundation of America and their wonderful resources. Go check them out. Please.