Conquering the Beast - The Story of My Battle with Lupus
Systemic Lupus Erythematosus. Say that five times fast. Shortened and simplified to just ‘lupus,’ this disease is sure not simple or straightforward. Most people are terribly misinformed about the common illness, or haven’t even heard the word at all. Having been diagnosed five years ago this summer, I have done my homework on the confusing disorder. Here’s a look into my journey down an exasperating road of discovery, struggle, and healing.
Lupus is a chronic, complex auto-immune disorder that can affect any and all of the organs. The word ‘lupus’ is Greek for “wolf.” It is unknown how it is caused, but recent scientists believe a pre-disposition plus an environmental trigger can ignite the disease. Most common in women of child-bearing age, research hopes to prove or disprove the correlation of estrogen. No one knows the cause, and no one knows of a cure. It can cause arthritis, skin rashes, including the classic "lupus butterfly rash" pictured to the left, kidney failure, joint pain, and many, many more dangerous effects. The diagnosis can take years, as there is no one simple diagnostic test. Frustrating as that is, for me, it was almost a relief just to be given a word associated with my pain. At least I had an answer. At least I could move on and try to heal. But was healing possible? Chronic means forever. It means constant, persistent, unremitting, returning, and ever-present. Chronic meant lupus would be with me until the day I died.
I was just 21; Carefree, wild, and courageous. I took a trip with my boyfriend to California. The minute vacation touched our skin we were laying poolside soaking up the rays. Wearing no SPF, the plan was always to burn, then let the tan peek through the next day. Three hours later I could feel myself burning. I was used to the feeling – growing up a competitive swimmer, with a prestigious teenaged career as a lifeguard; I was used to the sun, and stupidly, used to the burn. But this burn felt different. I sat up, propped my sunglasses a top my head, and allowed for my eyes to adjust to the blinding sun. As I glanced down, I saw a nasty red rash that covered my legs. I checked my arms and stomach – there too. My boyfriend and I decided I might have some sort of heat exhaustion, so we went up to the room. Soon, an unrelenting fatigue came over me. I decided to take a nap, and when I awoke an hour later, I pulled my arms out from under the covers, and immediately felt a locking sensation in both hands. They were locked in a “claw” position. I couldn’t extend my fingers. As I set both feet on the floor to get out of the bed, I realized my feet felt like they were broken. I sat back down. Something was terribly wrong.
The rest of the trip was infested with pain. Not only did the strange symptoms get worse, but I was running a high fever, exhausted, and completely scared out of my mind. My joints ached like I had aged four decades. They were swollen and hot to the touch. There was nothing to do but sit in the hotel room, and wait for our flight out so I could go home and to a doctor right away.
Back at home, and months of doctors’ visits and blood-work later, I was finally diagnosed with lupus. The symptoms of my vacation blunder had slowly faded upon our return. However, I was left with red, itchy, scaly, circular lesions on my chest, nose and scalp. I was finally informed these were called “discoid lesions,” and were very common of my newly diagnosed friend. The immunologist told me I had a “mild case,” and not to research the disease online. She said there was a large spectrum to the disease. Basically things can be very, very bad, or more often, things can be manageable, but still scary and dangerous. At least I wasn’t on the “very, very bad” end. But there was no telling if my mild would become my very, very bad.
Going against the grain as usual, I immediately started my research. I wanted to know everything about this “beast,” and named after a wolf, that certainly was what it was – a beast. Was I going to be ok? Would I ever feel normal again? Would it get worse? I was told repeatedly to stay out of the sun, and was immediately put on a high dose of steroids. I would later name these my “love/hate drug,” as they took away all my pain and symptoms, but left me with dreadful side-effects. I gained ten pounds, and mostly in my face, I felt like a totally different person. Named the infamous “moon face,” steroids did a number on my self confidence. I was moody, hungry, couldn’t sleep, gained weight, but hey, at least I felt better. Right?
It can be hard for someone without lupus to understand the nature of the often silent beast. My immune system had essentially high-jacked my body. Instead of focusing on fighting foreign invaders like bacteria or viruses, it plotted against my skin, joints, heart, and eyes. It spewed powerful antibodies into my system like a violent army, backing down only to the prednisone. I was told it could attack any organ in my body at any time, regardless of my particular case or history with it. Even though my family and friends were supportive and caring, it always troubled me that they couldn’t see my pain. Besides the rash (which was never to be seen again the moment I vowed to be absent of the sun), there were no visible aspects of my pain. Everything was completely internal – the intense fatigue, aching joints, heart palpitations, dry eyes, and emotional stress were all unseen to the naked eye. California brought on the “claw” as I called it, which coupled with the rash, were the only visible symptoms, and were mostly inexistent once I had things more under control. I longed for someone to feel my body for a day. I hated complaining, and hated the endless doctor’s visits and bills. I wished it would just go away. I wished even more that my loved ones knew how it felt to have the “silent beast” ravaging my insides, and the fear that it would eventually disable or terminate me.
For the next five years I would be on prednisone, teetering between high and low doses, and loving it and hating it at the same time. I had learned to manage my symptoms with the drugs, but wanted so desperately to be steroid free. I decided to take my destiny in my own hands, and started researching alternative treatments. This was a topic my doctors didn’t know much about, and didn’t seem to believe much in. I didn’t care. Hours and hours of research showed me there were millions of people out there living symptom free, “remission” lives, after changing up their life-styles. Eating healthy, becoming a friend to anti-inflammatory foods and herbs, taking supplements, exercising, sleeping well, staying stress free – these were all factors thought to affect lupus and its rage. I slowly started incorporating these factors into my life. Little by little I started seeing improvements. I was able to cut down to a very, very low dose of prednisone. I was symptom free at one point. I had a wedding, and a honeymoon – married the love of my life, and for once, things started looking up in the beast department. The following Thanksgiving I decided I would take my last prednisone. At least for now. I have since been off the drug for nine months. In those nine months I can’t say I haven’t experienced any pain – there have been not so great days, but they were manageable.
I now feel like I am in control of the beast. I cannot say the fear doesn’t still live inside of me – fear of the unknown of the future, but I can say that I no longer think of lupus every day. I truly believe I changed the course of my disease by changing my lifestyle, and contribute my success to patience, courage, and inner strength. I have no doubt that I will struggle with this again at some point in my life, but at least I know that I subsided things once, and I can do it again. My story won’t be the same for all people suffering with lupus. Unfortunately others will not be as lucky. Different things work for different people – this is just an account of worked for me. I hope others take comfort in knowing there is always more than one answer to a problem, and more than one way to conquer a beast.
- Lupus Support Group - DailyStrength
- LUPUS FOUNDATION OF AMERICA
This section of the Lupus Foundation of America's website talks about the chapters of the Lupus Foundation of America.
- Systemic Lupus Erythematosus (SLE) Symptoms, Diagnosis, Treatment, Causes and Signs by MedicineNet.c
Get information on lupus symptoms (butterfly rash) and signs, diagnosis, treatment options, SLE criteria, causes, pregnancy flares, prevention and statistics.
- Lupus Foundation of America