Living With Lupus

There are so many things I could say... so many ways I could restart blogging again and yet I hesitate to blog after so long of a hiatus. However, I had promised myself that I would post about Lupus during May since it is Lupus awareness month. 

Lupus, although more common than cerebral palsy, multiple sclerosis, sickle-cell anemia and cystic fibrosis combined, is often something that people haven't heard of. There are two main types of Lupus: Cutaneous Lupus and Systemic Lupus. Cutaneous Lupus is confined to the skin and Systemic Lupus attacks the whole body. 

 I have Systemic Lupus. A lot of people assume that an autoimmune disorder is like being immune compromised. The opposite is actually true. My immune system works over-time. It not only attacks the viruses and infections that I am exposed to, it attacks my own body as well. It has ceased being able to distinguish between the two. In fact, the lupus is so busy attacking my body that it lacks the energy to attack viruses and bacteria. As a result, I get sick more often than the average person and I stay sick longer. 

People with Lupus often talk about having a "flare" and I have realized not everyone knows what that is. A flare means that some system in my body is being attacked by my immune system. It always attacks my skin. I live with hives even though I have no allergies. It sometimes attacks organs such as kidneys. I have had more kidney infections in the last year than most people have in their lifetime. A flare also means decreased energy and cognitive function.  I am more easily confused when I am having a flare and I live exhausted.  

 Sunlight is my enemy. Really. If I am exposed to sunlight, the flares become worse. Specifically, I get more hives, I am more prone to infection, and the lupus more vigorously attacks various body systems. Even the tiniest amount of sunlight, such as driving from one place to another with only my hands and face exposed, can cause a flare. Sitting on my couch with the blinds open is sometimes too much sunlight. There are a lot of things I can do to minimize sun exposure such as wearing long sleeves and pants all year, wearing a hat while outside, and standing in the shade; but it is impossible to avoid the sun altogether. Also, my body reacts to interior uv lights as well. That means if I am at an arena or brightly lit mall I am just as likely to have a flare as if I am at the park.

Living with Lupus means being tired all the time.  It also means having a lot of doctors and a lot of appointments.  I have a pcp, a rheumatologist, and a pulmonologist.  That's it for now.  It also means that I take a lot of meds.  Some to control symptoms, some to slow the progression of the disease, and some to manage flares as they occur.  One of the meds puts my eyes at risk and I therefore have to see an opthamologist yearly to make sure I'm not in the early stages of blindness.  I am on antibiotics frequently.  

Some days are better than others.  In fact, some days I can almost forget that I have a progressively debilitating auto-immune disease.  Some days I can barely get out of bed.  Some days it is all I can do to hold my tongue when someone minimizes what I am going through simply because they cannot understand what they cannot see or have not experienced.