What Exactly is Lupus?

I have received a number of excellent questions over the past few months about my condition. Given that lupus is not generally well-understood by the wider population, I thought I would give you a glimpse into what I have learned about the condition since my diagnosis.

Originally, I was diagnosed with a vague “autoimmune disorder.” When I first began to have debilitating symptoms, my inflammation levels were incredibly high, but most of the rest of my blood work looked clean. It can take years for individuals with autoimmune disorders to be properly diagnosed because certain factors have to be lined up all at once for a diagnosis to be made.

In addition, autoimmune symptoms often mimic other conditions. For example, before my diagnosis was made, my doctors first had to rule out bone cancer, which my symptoms were mimicking at the time. (I keep photocopies of my clean leg x-rays mounted to my refrigerator next to my goal poster. When I’m feeling down about my pain or fatigue levels, these images help me to remember that I don’t have bone cancer. I am grateful for that fact every day.)

One of the reasons that lupus and autoimmune conditions like it are so difficult to diagnose is that lupus is a condition that may attack every major organ and kind of tissue in the body. As a result, symptoms can not only mimic other conditions, they can change over time. Mine certainly have. As a result, it has become incredibly important for me to track my symptoms over time. Failure to report changes in my condition to my rheumatologist can lead to serious complications.

Lupus is chronic. It will therefore be something that I will be dealing with for the rest of my life. Thankfully though, many lupus patients are able to reign their symptoms in and remain asymptomatic for long stretches of time. However, because lupus can attack any cell in the body, the condition ranges from mild to life-threatening in various patients. When lupus tells the body to create autoantibodies to destroy healthy tissue, the immune system responds by creating unhealthy levels of inflammation within the body. Autoimmune attacks can also produce damage outright, in addition to inflammation. This process often hurts like hell.

On the Lupus Foundation of America’s website, there is an interactive tool that explains how lupus may affect every major system in the body. Anyone interested in learning about lupus symptoms and about the condition’s general potential impact should check it out. It can be viewed at: http://www.lupus.org/resources/impact-of-lupus-on-the-body

Lupus is a complex disease that affects a minimum of 1.5 million Americans. Most patients are women. The condition most often develops during their child-bearing years.
It is important to understand that lupus is a so-called “invisible disease.” At the moment, if you looked at me you would be able to tell that I am tired, heavier than usual and losing my hair (unless I’ve just washed and dried it, in which case I am just one cute, tired mama). But if you saw me wince, double over or struggle to focus my eyes, you would not be able to tell why I am in pain. This “invisibility” can be truly tough on lupus patients because most of us don’t really look that sick. Even when our symptoms are debilitating, we may look fairly healthy. This creates an interesting game of social expectations among individuals who do not understand the disease.

Finally, I believe it is important to note that just like many cancer patients, many lupus patients tend to be fierce, brave, caring people. Having to battle your own body each day while simultaneously embracing and caring for it does something interesting to a person. Breast cancer survivors may wear pink while lupus patients wear purple. But in many ways, our inner battles seem to produce many similar messages of hope and strength within affected communities.

I do not think I’m yet at a place where I can say that I am “grateful” for my lupus, as some fellow lupus patients have said. But it has certainly compelled me to listen to my body, to redefine my priorities and to place what is truly important in my life first. It is what it is, for now… for better and for worse.

I recently heard Jillian Michaels say that when one is struggling with a true life challenge that a change in perspective can alter everything. “What if,” she said, “Your battle inspires someone else or yourself to come back better and stronger and ends up being the comeback of a lifetime?” I may not be grateful for my lupus. But it is giving me the opportunity to make the comeback of my lifetime so far. And that opportunity may indeed be a reality worthy of sincere gratitude.

Creative Genius on a Deadline

On December 15th, my daughter will officially become a teenager. (Even as I was preparing to note how strange and wondrous an occasion this is, it dawned on me that only four years separate the age she is turning and the age I was when she was conceived. I may need a drink before continuing this writing session... not really, but Oh, my!) To mark this momentous birthday, I am making Samantha a quote book. I want to ensure that even when she cannot speak to me right away about an issue, or simply does not care to speak to me about an issue, that she will possess a source of “wisdom” that is easy to consult.

Her quote book is taking me a significant amount of time, simply because I am researching a great number of subjects on my quest to discover relevant quotes that ring of truth, compassion and humor whenever possible. In addition, I am backing all of the quotes in decorative paper, accenting the quotes with images and designing each page in a different theme. This time-taxing birthday present is proving to be far easier to produce than her Christmas present.

My girl is proving to be a deeply considerate and caring gift-giver. Last Christmas, she recorded herself reading the entirety of “Peter and the Starcatchers” (a fairly lengthy children’s novel) so that I could listen to her voice whenever we’re apart. I did the same for her when she was little when I recorded Roald Dahl’s “Matilda,” which she now has memorized as a result. Her returning this “favor” was undeniably precious.

When considering Samantha’s Christmas gift for this year, I wanted to give her something as thoughtful as the incredible gift she gave me last year. So, I am writing her a novel. I’ve had the story brewing in my head for some time now. It only seemed fitting that committing it to paper would prove to be a thoughtful and loving expression of how I feel about my incredible girl. And yet… turning the story into a Christmas present means that I am working under a hard deadline.

I work well under pressure and hard deadlines do not bother me in terms of my day job, my relationships or even in regards to most of my personal goals. But my own creative writing work does not “like” deadlines. How am I supposed to revise a million times and second-guess my work even more often than that when I’m under the wire?

As you can see, working under a hard deadline does have its benefits. I am compelled to get out of my own damn way, set my ego aside and simply create. I honestly cannot afford to hem and haw about whether or not the work is “good” because I am more concerned with having it done by Christmas than anything else.

And yet, that unexpected freedom comes with a price. My Samantha will love whatever I give her. She will appreciate the hundreds of hours it took me to write her a novel, just as she will appreciate the dozens and dozens of hours it took to create her quote book. However, I don’t want to give her just any novel. I want to create her something worth cherishing… not just because I put time into it and finished it on time, but because the story is lovely and well-executed. I cannot objectively tell at the moment whether my story fits either of those descriptions right now.

Putting myself under a creative deadline has lit a fire underneath me and compelled me to produce something I am determined to finish on time and present lovingly to my daughter. That is a phenomenal accomplishment for me, given that I am prone to drawing out the creative process and am similarly prone to never showing anyone my finished work. I am hoping that this feat overwhelms the fact that my focus on production and delivery is making me second-guess the quality of my storytelling.

Working creatively under a deadline is a little like training for a marathon. You do your best each time you put in the work in order to present your best performance on race day. But on race day (or Christmas Day, in this case) you are compelled to choose to simply be vulnerable, put yourself out for others to see and hope that your best is “enough” for yourself and for anyone you have dedicated your efforts to. Here’s hoping that my efforts will be just that for Samantha and for the inner creative critic within me who could really stand to lighten up from time to time.

Why I have decided that I will not be shaving my head

Note: When I started thinking about this blog a few days ago, I was going to title it, “Why I am seriously considering shaving my head.” My decision on this issue was made yesterday due to an unexpected reality-check.

My daughter has magnificent hair. Although I have fairly thin hair when I’m healthy and her father has thin hair, Samantha has thick, straight, practically flawless hair. A few years back, she asked me if she could donate her hair to Locks of Love. When I asked her why she wanted to donate her hair, she said simply, “Sick people need wigs and they deserve to have good hair in those wigs. I have really good hair.”

Between the ages of 5 and 12, I battled a very, very severe case of hyper-inflamed childhood acne. While my peers would develop acne (as expected) during their teen years, I got my first giant, painful, overly-large pimple in kindergarten, on Valentine’s Day. I know this for sure because I was in a wedding that day and I was sure that my chin was the most noticeable thing about my five-year-old self.

Because my childhood face was often difficult for me to look at, I began to identify my looks by my hair. My sisters closest to me in age were similarly identified by their hair. Megan (the youngest) was the fiery redhead. Sylvia (the middle sister) was the bouncy blonde. I (the oldest) was the bookish brunette. My hair and my eyes were the elements of my looks that I prided myself on as a kid. And the nine-year-old that lives somewhere deep within me has been fuming and grieving because my lupus is making my hair fall out.

I have mentioned before that lupus is causing me to suffer hair loss. But that phrase seems too weak now for the situation at hand. My hair is not simply thinning anymore. As luxurious as Samantha’s hair is, mine is not. Over the past few weeks, it has gotten so bad that if my hair is not freshly washed and heat-dried, I am compelled to wear scarves on my head in public. Without them, any casual observer will be able to see multiple bald spots, whether my hair is up or down.

So why don’t I simply wash and heat-dry my hair everyday, you ask? When I wash my hair, small handfuls of hair fall out. When I heat-dry my hair, more falls out. When I brush my hair, more falls out. And throughout a hair-washing day, more and more and more falls out. To give you an idea of how little is left, the diameter of my ponytail is now the size of a nickel… a penny when wet.

I have been thinking seriously about shaving my head. Though shaving one’s head right before a Minnesota winter hits sounds insane, I’ve been so frustrated with watching my hair fall out in such significant quantities that shaving my head seems like a healthy emotional choice. If none is left, I don’t have to watch it fall out every day. I can just set it free and embrace cozy knitted hats. I have no desire to be horribly vain. But if I told you that losing most of my hair (which I can only hide on the few days a week I make myself go through the awfully depressing ritual of washing and heat-drying it… usually on the days I physically go to into work and one weekend day) wasn’t making me depressed, I’d be lying.

Yesterday though, I decided that I am going to keep my hair. Why? The answer begins with a trip to the movies. I am a movie junkie and have been eagerly anticipating the holiday movie season. November and December are some of my favorite months of the year, not just because of celebrations, wonderful decorations and yummy treats. Hollywood releases a large number of potential Oscar contenders in November and December. It truly is the most wonderful time of the year.

I kicked off my own personal Oscar season with “Gravity” a few weeks ago. Next on the list was “12 Years a Slave.” I had expected to be affected by this film. Because of the ways in which I react to stories on the screen as well as the page, I was preparing to be heavily affected by it. The film’s power exceeded my expectations. It was an absolutely incredible film. I will not get into my views about its structure, character development, cinematography, acting, music or anything else, because this post is already running long. But please, the moment that you have the time and emotional strength to sit through this film, do so.

As the credits rolled, and I wept quietly into Mark’s shirt, the only thought about myself that crossed my mind was the incredulous realization that, “I’ve been so worried and upset about my hair.”

I do not believe that anyone should feel ashamed to grieve, become angry or frustrated simply because their life has not been touched directly by the worst atrocities that have befallen the human race. But I will assert that I personally now understand that I have allowed my experience of illness to make my life very, very small since a few weeks before going on medical leave in September. It is reasonable to be upset that I am legitimately going bald as a 31-year-old woman. But there is a limit to how upset one should reasonably be about such things.

I have a law degree with a concentration in international human rights law. I spent most of my law school career reading testimony from victims of rape, genocide, ethnic cleansing and disappearance. I spent most of my undergraduate career focused on the plights of women whose rights are consistently trampled on in the most brutal of ways. I spend my days now writing about disfiguring injuries, civil rights violations, never-event medical errors and families being torn apart. And yet, I’ve been very upset about my hair.

It is too easy to allow illness to make one’s world very, very small. Each day becomes little more than a catalog of symptoms, medications, therapies and unrestful rest. But even as I have allowed my world to become small, the world itself is not. And my world need not be anymore, now that I have been granted some much-needed perspective. In short, I will not be shaving my head.

Knowing your limits (or) Why I moved out of my apartment

When I went on medical leave, I explicitly promised my doctor that I would rest. Really, really rest. Not “Kassie” rest where I lay down for ten minutes and then get up to do dishes but actually allow myself to recover and heal without the pressures of an overloaded to-do list and multiple creative and health-related ambitions. I wrapped my mind around rest and did my best to embrace it. Then, a new family moved into the apartment below mine.

Now, as a feminist, I do my best to honor the different approaches that women take to work, family, creativity and life in general. I find strength and inspiration in the dynamic ways that women approach everyday challenges. But holy mother, it can be difficult to keep that in mind when someone’s approach impacts your life directly in a nasty way. Woof.

My new neighbors consisted of a couple and their three-year-old son, who is a serious cutie. Having been a single parent of a small person, I understand firmly that change can be rough on kids. So, I didn’t let it get to me when the little guy screamed and cried at the top of his lungs for the first several days after the family moved in. I tried to ignore the constant banging accompanying the screaming, figuring that the little guy was unpacking his toys and giving each of them numerous hearty whacks before putting them away. (I have a little girl… I have no idea what little boys do.) But several days into their new presence, the screaming and crying and banging had yet to abate. And not being able to sleep, read, write or hear myself think was becoming taxing.

I went down to introduce myself and to let the parents know that I was going on medical leave within a few days. I courteously asked if the little guy would be home most days and if he ever took naps. I was assured that he would be placed in daycare in two weeks and that he would hopefully start to nap soon. I returned to my apartment confident that I could stick out two more weeks before guaranteed rest time during the day. I started living in my noise-cancelling headphones, which helped to muffle the screaming, even though it did not drown it out significantly. My parenting style did not involve my daughter screaming bloody-murder all day and into the quietest parts of the night, but I had a ridiculously good kid. I could cope. It would be fine.

The kid never stopped screaming or banging. And after two weeks of enduring it round the clock, I was informed that the little guy would be staying home, not going to daycare at all. I was so on edge from sleep deprivation and constant negative noise that I knew a change had to be made. These parents were not going to change their parenting style, so it was on me to make a change.

Now, I love my apartment. I really, really do. It is the right size for me and my bookshelves. It has a small porch that overlooks a giant tree that colors beautifully in the autumn and blossoms hopefully in the spring. In the winter, everything about my space makes me feel cozy and protected. I’ve lived in my apartment for four-and-a-half years. But because my health is more important than living in a space I love, it became clear that I would have to leave.

The constant insane noise level was making me sicker. I could have dug my heels in and stayed in my space stubbornly. But it would have done me more harm than good. When I found out that the little hellion was not going to be leaving the house for even a few hours a day (blessed rest for me! Oh, the promise of it all!), I knew in my heart that I could not endure a winter season cooped up with the non-stop screaming, banging, crying concert that was that child. I had hit my limit. And I took it upon myself to make a change.

So, the day before I returned to work, I moved from my apartment of four-and-a-half years. I miss it. I miss my tree and the space that had come to hold so many memories and so much of myself. But ultimately, in respecting my limits I did right by myself. Sometimes I pause in the middle of the day now just to hear deeply into the quiet of my new apartment. And in those moments, I know I made the right decision.

“My map” pre-and-post medical leave

My favorite television heroine of all-time is Ms. Sydney Bristow from the hit show “Alias” created by J.J. Abrams. Ms. Bristow is a brilliant, bad-ass, strong, sexy double-agent who struggles valiantly to remain vulnerable, compassionate and connected in a world marked by evil intentions and unimaginable deeds. I am inspired by this character for a multitude of reasons, but perhaps most of all, I admire that even when she is overwhelmed by emotion and she feels like she can’t keep moving forward, she does.

I also strive to move forward when it feels like I can’t, which is why I hit a bit of a roadblock upon needing to take medical leave. Because unlike Ms. Bristow, I was facing a time where I literally could not make forward progress, despite my best intentions. While on medical leave, I stopped writing partially to rest and partially because I was ashamed. I felt that in taking time to heal (and not doing a very good job of healing during my time off) that I was admitting defeat to so much that I aspire to do and be.

There is a phrase in our culture that I move between loving and hating: Cancer Warrior. We throw that title around like a badge of honor. In many ways, cancer and autoimmune patients (as well as other patients with significant chronic conditions) can behave like warriors, by pushing through the pain, “defeating” their symptoms and moving forward in healthy and renewed ways. But when you’re in the trenches and your symptoms have yet to improve dramatically, the title of “warrior” can inspire a pressure I’ve never known before.

I went back to work a few weeks ago not because I felt physically ready to, but because my short-term disability claim was tied in red tape and I couldn’t miss any more paychecks that were supposed to be significantly covered by that insurance. My claim finally went through today, accompanied by an apology from my case worker who told me that if my doctor wanted me to take time off again that I could immediately, now that my claim had finally been processed. But how do you take time off once, let alone twice, in a culture that pushes you to be a disease warrior?

I stopped writing and I hid my pain from even my closest friends during my leave. Because who wants to hear complaining? I want to write about training through the pain, about “overcoming” lupus and beating the odds. No one wants to tune in to hear tales about how I skip meals because I am too tired to grocery shop or how so much of my hair has fallen out by now that I can no longer put it up without showing off multiple bald spots. Or how about a blog dedicated to hip and kidney pain that spikes so severely in the middle of the night that it wakes me up and holds sleep hostage? That sounds like a fun read, huh?

I love heroic stories, especially if they involve spirited girls or bad-ass women. And as a result, it has seemed inappropriate to write when I am neither feeling spirited nor bad-ass. I wanted to tell you that going on medical leave has made me wiser, stronger, better. I didn’t want to report that I am still tired, still in pain and far more discouraged than when I began. But the truth is, invisible diseases suck. And my immune system is having far too much fun waging war on itself to cooperate at the moment.

But here is the multi-colored lining to the ridiculousness that has been my medical leave: I went into it with certain expectations and they were not met. That is both frustrating and enlightening. Inspiring, even. Early in Season One of “Alias” (if you haven’t seen this show, it is streaming on Netflix, so what are you waiting for?) Sydney draws her handler a map of how far she believes her enemy’s reach extends. She insists that if they are going to defeat the enemy that they need to do it her way and they need to do it now. Her handler calmly brings out a map of his own which illustrates that the reach of the enemy extends farther than Sydney could have possibly imagined. He then tells her that it is not about killing an arm of the monster, it is about killing the monster as a whole. My medical leave expectations were essentially Sydney’s map. But my lupus has a reach that resembles her handler’s map.

So, what’s next? I set about killing the monster. It is going to be a longer journey than I would prefer and a more complex one than I imagined before I took medical leave in September. But, I have learned something about my condition over the past few months and that knowledge is invaluable. And I am not going to lie to you all and say that I maintained a brilliant, optimistic attitude throughout the entire process. I spent some time in some dark, discouraged places. But I can say sincerely that I have emerged from them with a greater sense of clarity and with sincere optimism rooted in the knowledge I have gained.

I hope you will stay tuned to my blog, which I hope to write roughly twice weekly from now on. It will not always be happy-go-lucky, but it will be hopeful, genuine and rooted in pursuits of health, happiness, marathon success, strength and inspiration. But for right now, (even though I hate to admit it) writing this is exhausting, so I’m going to go watch some “Alias.” And somehow, I know that deep down you’ll all forgive me for that.