Lupus Is Not My Identity

I will never forget the phone call I received on a seemingly normal afternoon in May 2010. The caller, a nurse, reported simply and unemotionally that the lab test results were in which indicated a new diagnosis of lupus, also called SLE or systemic lupus erthematosus. Lupus is a relatively common autoimmune disorder, an inflammatory disease caused by the immune system attacking itself. Nothing is off limits with this type of lupus. The disease can attack kidneys, heart, lungs, skin, joints, blood vessels and liver. There are more than 200,000 to 3 million cases per year. The disease can be managed by a multitude of medications and/or therapies. More women than men are diagnosed with lupus and more often than not, the women who are diagnosed with lupus are African American.

When I received the phone call, the nurse nonchalantly asked me if my rheumatologist could send a new prescription to the Target pharmacy I had listed on my intake documents. I asked her about the side effects, she discounted my concerns by indicating the dosage was low and also sharing she had been on the same medication, Plaquenil, an anti-malaria medication and first line lupus medication, for 14 years at that point with no issues. To say I was stunned was an understatement.

We need to think more clearly about our healthcare

I began taking the medication prescribed, however, I only lasted seven months because the side effects my nurse dismissed where problematic for me. They were concerning. One of them, sudden vision changes or loss, due to ocular toxicity was a particularly scary one. It was suggested that I get my eyes checked every six months rather than annually while on Plaquenil. Many side effects included hair loss, which was already a problem for me because of genetics and the lupus, weight loss (yes please! Just kidding), depression, digestive discomfort and of course death. With this litany of side effects it is possible that the medication could end my life abruptly before the lupus could. While I am not suggesting everyone get off of all of their medication without careful consideration and support in terms of transitioning care, I am suggesting we think more clearly and are more intentionally about our individual healthcare. Informed and intentional care is what I like to engage in.

Thankfully, I did not suffer any adverse reactions to stopping Plaquenil abruptly. For that I am truly grateful. I made a decision to eat well, exercise (hot yoga, hot Pilates and Kettlebells at the time), manage stress, have strong relationships with loved ones and continue to develop my relationship with God, but remain off of any traditional treatments.

I wasn’t introduced to essential oils until April 2012, about 16 months after I stopped taking Plaquenil. But my dear friend Kris Beal gets an ‘A’ for effort with regards to sharing the oils persistently with me. I thought they [the oils] were an unwanted guest in friendship. They kept coming up. Like in every. Single. Conversation. Mercy!

After the oils worked for two situations that came my way: an underarm contamination issue and my bloodsucker, Pepe, from Cabo (San Lucas). I decided to attempt to keep lupus flares at bay using essential oils. All flares are not created equal; thankfully, I know when they are trying to move into my body. It is as if I have the flu times a thousand plus every joint in my body hurts starting from my ankles and the tiny bones in my feet all the way up my body. I need to be in bed because the fatigue is almost unbelievable. I can be fully engaged in a conversation and then in a second I can feel my eyes grow heavy and I could fall asleep right there mid-sentence. A flare can come on out of nowhere.

I found my voice

I feel empowered by essential oils. I feel that not only am I taking a stand for myself, I am for my family and that I have a voice in my health. It reminds me of a time I went to see my rheumatologist. The medical assistant (MA) asked me three times if I had a pharmacy I could list on my chart. I told him three times that I do not use medications, thus I do not use a pharmacy. He could not believe it. Then two residents came in to ask me questions prior to my rheum coming in to ask many of the same questions. The guy resident was nice enough. He asked why I was coming if I did not want to be prescribed medication. The lady resident was not nice at all. After a quick prayer for words, when my rheumatologist came in, I let her know in no uncertain terms that I am the CEO of my health care and that she along with the rest of my medical team, my primary care physician, and my neurologist sit on the board of directors. I politely asked that the lady resident not return to my visit. I found my voice again during that appointment.

Life is too short to be chained to a diagnosis. I am grateful for that phone call in May 2010 because it has helped me develop an inner strength and a sense of advocacy that may not have been cultivated without it. While I am not the diagnosis, I feel thankful to God for the strength and ability to inspire with hope and love. Life is good even though some days are more challenging or painful than others. To have a voice to say yes or no, that is an incredible gift. My voice will be heard because I was created to use it. And when I use mine. You might feel inclined to use yours. That’s how this thing works. Life has a thread of connectivity about it. Let’s grab onto one another, you never know it just might be the thing you didn’t realize was missing.

**These statements have not been evaluated by the Food and Drug Administration (FDA). The products mentioned are not intended to diagnose, treat, cure, or prevent any disease.**