So anyone who has lupus has had this question at some point or another. If you’re like me, it haunts you at least once a day. I mean you deserve an answer, right? After all, you were just minding your business, going about your life, enjoying your twenty-something’s. All of a sudden you’re struck with this mysterious thing. This thing that keeps you up at night with pain in your chest when you breathe in and out. This thing that causes some weird pain in your left shoulder, left side of your neck and random headaches that range from mild to day-stopping. This thing that scares the shit out of you whenever you have a pain in your lower back region because your mind automatically flashes back to the time you spent two weeks in the hospital for a kidney flare.
Pleurisy. That’s the name the doctor’s give to the chest pain. For different reasons, inflammation strikes the thin layers of tissue (pleura) that cover your lungs. For lupus sufferers, inflammation is the bane of our existence and this can easily be a normal symptom of the disease. But ok…it is what it is. I’ve come to learn to deal with this symptom the best I can.
I suspect the weird pain that radiates the left side of my body is nerve related. When it first started happening to me, I lived in fear of having a stroke for nearly a year. I’ve had three MRI’s in hopes of this magic machine detecting something. Each time, a different doctor gives me the same results. “We didn’t see anything.” In the beginning I felt some type of way. I mean what am I supposed to do? Sit around and wait for my brain to be possibly permanently damaged? But again, it is what it is. This, along with the fear that accompanies my back pain, are other things I have learned to deal with the best way I can.
So not to toot my own horn, but I’ve been a trooper when it comes to this thing. I go to routine doctor appointments even when I’m not having complications. I take the medications the doctors prescribe to me, for the most part. (We’ll talk about that later…totally different post). I go through weird, random symptoms every day now, or at least it feels like it, and I don’t complain to anyone. (I hate burdening people with talks of my condition, especially when everybody has their own s#*& to deal with. Plus after a while it starts to feel like self-pity). Having said all of that, I feel I’m entitled to certain information such as the origin of this mysterious, life-altering disease. I remember my first appointment with my rheumatologist in Baltimore. After dealing with the initial shock of the diagnosis, now I’m ready to try and move on with my life. Sitting on top of the table in the examining room, my eyes are nervously darting around the room. Certain things about doctor visits always make me uncomfortable for no particular reason. The generic pictures they always seem to have on the walls. The sound from my pants and those paper sheets on the examining table making friction. And those latex gloves. Those damn latex gloves. Anyway, I’ve been waiting months to see her with that burning question on my mind. The visit went pretty quick. At the end when she asked if I had any questions or concerns, I presented her with that burning question. “Where does Lupus come from?” I expected her to give me an extremely technical answer that I was almost certain I would need broken down into layman’s terms. “For some people its genetic…for the most part it’s unknown.” That was it. That was her answer. In my mind I’m thinking, “So basically what you’re telling me is you don’t know?”
Needless to say, I wasn’t satisfied with this. So I decided that I would figure it out. At twenty five years old, I was going to crack the code and answer the question doctors and scientists had failed to answer thus far. Where did I turn to do this? The internet of course 🙂 After weeks of researching online, what I found out was lupus mostly affects women of child bearing age (particularly women of certain ethnic backgrounds). The symptoms can vary from person to person and no two people have the same case of lupus. Every website I visited offered the same explanation for the cause of lupus…it’s unknown. Well, that ends that.
As time went on, I started to hear different people’s theories on the subject. Some people think its diet related. Some people believe it’s directly related to the stress that one experiences in life. And if you ask a Jesus freak, they might say God had a reason for it. That reason might be bad or good depending on your life and how you choose to perceive it. So back to square one.
As for me, I have given up trying to answer that question specifically. Now what I’m attempting to do is become more in tune with my body. Listen to what it’s trying to tell me. There’s no doubt that it’s communicating with me all the time. With every breath, every ache, every moment of inexplicable fatigue, it’s trying to tell me something. An important part of my journey now is breaking down the communication barrier between us, my body and I. That’s where defining lupus will start for me.