What is lupus? It’s a chronic, autoimmune disease that can harm any part of your body (your organs, joints, skin…). In an autoimmune disease, your immune system can’t tell the difference between viruses and your normal, healthy tissues. Your immune system then creates antibodies that attack these healthy tissues, causing damage, inflammation, and pain. Lupus is also a disease of remissions and flares, which means it gets better and then worsens again. It’s estimated that 5 million people have lupus, with 1.5 million of them being Americans. I myself am one of these 1.5 million.
I was diagnosed with lupus in 2012, when I was in the 8th grade. I had several of the denoting symptoms: unexplainable rashes, anemia, fatigue, weight and hair loss, and stomach and joint pain. But it took a while for me to be diagnosed, though. The lupus was hiding behind the veil of another autoimmune disease.
I’d been diagnosed with juvenile rheumatoid arthritis about a year prior, and at first my rheumatologist, Dr. Ray, thought that my symptoms were an arthritic flare-up. I’d even been tested for lupus back in 2010, and the results had come back negative. But when my condition became so bad in March of 2012 that I’d had to spend a week in the hospital, it became clear that my arthritis wasn’t the sole cause of my debilitation. Dr. Ray, along with my pediatrician and a host of hospital doctors, tested me for a plethora of possible diseases and ailments. I had a CT scan (a type of X-ray), an endoscopy (a procedure where a tube is stuck down your throat to look at and take sample from your internal organs), and a massive amount of blood-work.
The blood-work was what tipped the doctors off. My numbers were vastly different from what they had been back in 2010. I now tested highly positive for lupus. But you can’t diagnose lupus from blood-work alone. But the fact that I had so many lupus-like symptoms, such as the rashes and stomach pain, and that my arthritis medicine wasn’t helping with any of them led the doctors to the diagnoses that most likely saved my life. I was so weak and in so much pain that I literally couldn’t get out of my best without assistance, much less sit up or walk around. I had no energy or desire to eat and had lost about 30 pounds, becoming a skeletal version of myself. And when I arrived at the hospital, I was sorely dehydrated and unable to move due to intense stomach pains. If I hadn’t been diagnosed and put on proper medication, I honestly don’t know if I would be here today to write this.
On the counter in my kitchen, there is a line of nine prescription bottles, all with my name on the label. Then there are the other over-the-counter medicines, like vitamins, that I take at Dr. Ray’s suggestion. In one week’s time, I take over 100 pills, and they aren’t without their side-effects.
When she diagnosed me with lupus, Dr. Ray put me on a 60mg/day dosage of a steroid called prednisone. Steroids are great for immediate relief, but they aren’t great as a long-term treatment. They caused me to gain back the 30 pounds I’d lost (a good thing) and also an extra 50 pounds (a not-so-good thing). They gave my face a rounded, swollen appearance and also made me unable to sleep at night. Dr. Ray is slowly working the dosage down, but she can’t take me completely off until she finds a replacement medication that works well with me, or I could have another flare-up and land right back in the hospital, which is an episode I’m not eager to repeat. Right now my steroid dosage is at 2mg/day. The side-effects aren’t as prevalent, but they’re still there; my face doesn’t resemble that of a chipmunk with his cheeks stuffed full of nuts ant it’s a little easier to sleep at night, but I still have the extra 50 pounds. I’ve tried several different medication combinations, but I haven’t found the right one yet. Dr. Ray says next we’ll probably move from pills to intravenous medicine (medicine administered through an IV). Being stuck with a needle doesn’t scare me anymore, seeing as I have to get it done every three months for blood-work when I go to the clinic for a check-up. As long as this medicine works, I’m okay with it.
With the right medicine, people with lupus can live fairly normal lives. IN fact, no one can usually tell I have any chronic illnesses unless I tell them. But even if I feel fine, there is still the underlying threat of a sudden flare-up. The best medications for lupus can only help to control the disease; they don’t cure it. So though I may appear normal-enough on the outside, I still have this illness in my body lurking just below the surface, like some predator stalking through tall grass, hidden, waiting to pounce on its prey.