The tests results are in…the ANA is positive, as well as the SM. This is the first glimpse a doctor has of a lupus patient. These numbers are an important element in solving the puzzle of a disease that is often called “The Great Imitator.” Once the lupus diagnosis is made, it comes down to the course of action. There are two regimented allies fighting this war. The first is the patient, who was in this battle long before she realized she had to fight. The second are the doctors, who are trained to be stoic warriors and watch the ever changing indicators. Unlike RA, the lupus patient has many specialists monitoring different areas of her body.
As a patient, I became overwhelmed by all the numbers. I turned my brain off, or was it actually brain fog, getting in the way? My world was changed drastically five years ago, and I will never be fully the same. I know I should study the test results, write them down, learn all their meanings. But I don’t know how or where to begin. On the other hand, how do I describe what lupus feels like to my doctors? They are as perplexed by my daily struggles as I am by all their data. With this article, I will attempt to try and come close to that description.
In reality, lupus has a different feeling every day. Sometimes it is joint pain and stiffness. Some days I am confused by simple tasks. Other times I can feel the heavy, pulsating beat of my heart, causing me to be dizzy, exhausted, and worried. My stomach is always upset. My digestive system is in a constant state of confusion. My skin itches and tingles every day, all day long. Sometimes I awake in streaks of blood from scratching in my sleep. And on really bad days, I feel all of these things at the same time. I am a person with a mild case of lupus, forever wondering what it will be like for me when it becomes severe.
In a sentence…my body has forgotten how to mechanically run on its own. Each individual part is running independently of the others, in a type of mutiny. As the patient, I try to do my part by learning to adjust and following my doctor’s advice, although I have to say, a healthy amount of denial of my fate has helped me live my life to the fullest.
This journey for me actually started at age eight with Juvenile Arthritis. Thirty- seven years later and three more autoimmune diseases added to the mix, I have what is now called Connective Tissue Disease, with Lupus SLE as the front runner. Lupus SLE can give one unexpected “gifts” throughout its duration that go far beyond joint pain. Over the past five years, I have spent time in the hospital for heart- related issues. The first time was when, during a Rituxan infusion, my heart rate dropped to 38bpm. The second time was when five blood clots were found in my leg. Occasionally, I have difficulty breathing. It is almost as if my lungs can’t fill to capacity. In my head, I ask…”Is it my heart? Do I have a clot?” Those are often very long nights. I ride it out until it passes. After all, if I went to the hospital every time I felt something such as this…I would have to eventually pay them rent.
Along with the tangible comes the intangible, the parts of this disease that cannot be measured in a blood test, yet are very much a part of our lives. I am talking about the fatigue. It is debilitating. Do you remember the required obstacle course you were forced to navigate in gym class? Now imagine every day with an obstacle course laid out before you in the form of daily tasks. Only this time, when you finish it, you are required to repeat it again and again until you go to sleep that night. That is the type of fatigue I am talking about. It is when every nerve ending in your body is pulsating with electrical charges, because it has worked overtime all day. And as ironic as it sounds, for some reason when it is time to retire for the night, your brain has disconnected the messages to your body that says it is time to sleep.
Being an artist, lupus for me is defined by visual metaphors, a grouping of pictures that are forever playing in my head. But two are more prominent than others, the first being “the wolf,” the other being a Jack-in-the-Box. Lupus patients often refer to this disease as “The Wolf” because of its name. But it is also a perfect visual of the characteristics that this disease holds. As with Red Riding Hood, you are never completely out of the woods and safe. Everyday issues that most people have to address become magnified for us. With every slurred word…with every twinge of pain…with every rapid or slowed heart rate or indigestion, we wonder…is that the wolf lurking and licking at my heels? With the complexities of a disease that lives in all areas of my body, it is helpful for me to give it a face. But along with that face is also a sound, the sound of a Jack-in-the-Box: that constant, slow turning of the handle and that awful tune playing in your head. Even when you are receiving treatment and you start to feel better, your brain never let’s go of the thought that the Jack-in-the-Box handle is still slowly turning, and eventually the wolf, dressed like a clown, will pop up again.
As patients, most of us don’t understand how the body functions. We never studied it to a full extent, and therefore it is a mystery to us. Every night when we lay our heads down to sleep, it is as if we are put adrift on a raft, uncertain of where we will be when we wake up. Every morning is different. The only thing that is certain is that things will change, no matter how good we feel. There is a constant state of uneasiness, that you realize is now your constant companion. It is the acquaintance you had in school that you tolerated, who was always the first to point out dismal news. Whenever you bumped into him in the hallway, you wished you hadn’t…but his words forever penetrate your mind…”Is this the day of the deadline?” With lupus SLE, this is how I feel every day.
Lupus DLE is a different story. It is a visual that does not have to be imagined. It is staring back at me in the mirror every morning. Although I know in my head it will be the Lupus SLE that will get me in the end, it is the Lupus DLE that is most disturbing in my life. It was the most physically altering of all my autoimmune diseases. It is the only one that never rests, and it never lets me go into denial. Its image is on every reflective surface and in every stranger’s eyes.
I used to be beautiful; I had deep Mediterranean skin with black hair, so that even at the age of 40, people often thought I was 30. Since I was a child, I could never be out in the sun. If I were, I would become ill and break out in painful red bumps. It was a joke in my family that Debra didn’t tan, she “rashed.”
The first thing I noticed was that I had lost five shades of pigment and went from a Mediterranean olive complexion to a ruddy Irish one. Slowly after that, I began to have rapid hair loss. My eyebrows became nonexistent. I prayed my eyelashes wouldn’t fall out. The lesions started out as a small area on my face that itched. Isolated, it feels like tiny little bugs are feverishly eating away at me from the inside. For several years before getting Benalysta infusions, the lesions were painful, open wounds. As they went through the process of discoid stages, a black disc shape would form on them…sometimes it stopped there…other times, the process would repeat again and again; in the end, it always scarred. The DLE hit me so hard and so fast, I was convinced that in a past life, I had been a beauty queen who had been mean to ugly women…Karma is a bitch, and now I am paying the price. After awhile, I began to feel like a leper and wished there were a colony somewhere, where I could reside.
It is difficult to go from a person who was considered to have beautiful skin to a victim of discoid. When it first reared its ugly head, I avoided mirrors and reflective surfaces .But even still, it was the strangers I would meet who would remind me that I am a freak. They often stared as they walked by, leaving me feeling exposed. I once had a kind-hearted Jewish lady tell me, “Come here, sweetheart,” as she removed a hanky from her purse, “You have schmootz on your face.” She had a hold of me before I could protest and was rubbing vigorously. The pain was unbearable.
I feel, every day, that I have been given a test of survival. Despite the strength everyone says I have, the sorrow of the abandoned child lives on the surface, at the back of my throat, as a constant reminder of just how vulnerable I am. My world is different from everyone else’s. I am never on solid ground; it is always shifting beneath my feet. There is no cure for lupus. If the numbers become good, it doesn’t mean I am cured or had a misdiagnosis…it just means the wolf is caged, for only a brief period of time, and he will be back.
