At the Beginning

     I was diagnosed with Systemic Lupus Erythematotus (SLE) 5 years ago, completely by accident. Having extensive lab work done for another medical matter, my doctor let me know that my blood work tested positive for anti-nuclear antibodies (ANA) and upon further testing, combined with a family history, of rheumatoid illness, I found out I had lupus. Truth be told, it was very anti-climactic, as I exhibited no signs or symptoms of the disease- yet. My doc gave me some pamphlets and told me that I was "young and in good shape", so there was no need to see a rheumatologist yet; just "keep an eye out for symptoms" and "stay on top of it". He didn't seem to make much of it, so why should I? But, once again "yet" was the definitive word...

     Lupus is an chronic rheumatoid autoimmune disease that attacks and can damage any part of the body. While most compromised immune systems tear down the body's ability to fight off foreign cells, lupus sends the immune system into overdrive where the body can not differentiate between healthy and unhealthy cells. SLE most commonly affects, but is not limited to, a person's joints, cartilage, organs, central nervous system, and skin. It can cause painful inflammation, tedious joint and muscle pain, rashes, fever, severe fatigue, memory problems, organ weakening and can literally eat away at the skin, a symptom also known as Cutaneous Lupus Erythematotus (CLE) or discoid lupus). Lupus is often referred to as an "invisible illness", as, save for the skin issues, a person often has no visible signs. 90% of people diagnosed with SLE are women, often of child bearing age, but, it knows no age, gender, or race.

     Stress is the biggest trigger for provoking lupus symptoms, like it is for so many things. Two years after my original diagnosis, and not long after unexpectedly losing my father to cancer, I noticed a fatigue that I'd never felt before. It was heavy and dense, like I was in a fog of quicksand. I chalked it up to my grief, and did the exact same thing when I noticed the searing pain radiating through my body and my long, wavy locks slowly beginning to shed. My depression was fierce, and to this day I don't know if I thought this was normal or if I just didn't care anymore. It wasn't until fistfuls of hair fell out with the single swipe of a brush, irritated lesions starting appearing on my scalp and my skin grew so sensitive I couldn't even shower, did I realize something was not right. Two general practitioners waved it off and sent me on my way with steroids -oral and topical- and antibiotics; none of which did the slightest of healing. Completely bald and with a scalp that belonged in a horror movie, I sought out another doctor, a dermatologist this time around. Four days after a dermal punch biopsy and numerous swabs, the doctor called back -not her assistant, not the nurse, the actual doctor- and told me to get to the hospital as soon as I could (something everyone loves to hear, no?). Not only was I having my first major lupus flare, I had a severe cutaneous/discoid lupus outbreak. As if that wasn't enough, I had a severe staph infection/MRSA (methicillin resistant staphylococcus aureusin) in those. The doctor had already called the hospital, reserved a room, and placed orders for some serious antibiotics. PICC lines were inserted, sterile linens had, warning and infectious disease signs placed on the door, and doctors revolved through the room like Christmas shoppers waltzing through a rotating door at Bloomingdale's. General Practitioners, rheumatologists, dermatologists, infectious disease, the list went on. Go big or go home, right? On top of that,  I had to have my head scrubbed and cleaned everyday, which had to be the equivalent of washing a bullet wound with a steal wool pad. Even with the massive amounts of Dilaudid, I felt the aggressive caresses of the infectious disease nurse. Days mounted, antibiotics weren't working and I was getting to the end of the list of the ones I could take to combat this battle. And by no means did it help that I had an allergic reaction to the combo that actually was showing some improvement. Just as my scalp showed signs of healing, scarlet, feverish whelps covered my body. I like to think that I pride myself for not crying, but the truth is, that's only because it hurt too much to do so.

     Three weeks later I was discharged with a stockpile of oral and topical antibiotics, various creams, gels (that's not counting the pills I got to combat the lupus in general!), and written orders for everyday wound care. It would still be months and months before it would be completely healed, even longer before my hair would start growing back in (to this day I still have a few random bald spots).

The "good side" of my scalp during my first lupus flare. The back and other side were to gruesome to post.

At least I got to wear my own pajamas. That's always a plus.

     My first flare was a doozie and a half, and took me a good six months to get over physically and I still struggle with it emotionally. I had no idea of the path this journey would lead me on. Some days are good, some days I want to grit my teeth and scream at the same time, and some days I just want to curl up in a ball and just simply "be". But, by no means can I complain about life being dull, every day is a new adventure and not a moment goes by that I don't learn something. Though I would much prefer the learning take place outside of three week long hospital stays.