How to Live and Thrive with Lupus
I’d heard of lupus before. I remember Toni Braxton announcing she had the disease a few years ago on her reality show. But I never took the time to learn more about it until I recently when I found out one of my cousins has lupus.
Lupus is a disease where your immune system starts to attack your body’s healthy tissue. Black women are three times more likely to develop the disease than white women, and have more severe symptoms. But that doesn’t mean the disease should limit us.
My cousin, Zakiya Walters, talked to me about how she lives and thrives with lupus.
When were you diagnosed? And what was your initial reaction?
I was diagnosed several different times because I have two types of lupus: Discoid Lupus Erythematosus, which affects your skin and scalp, and Systemic Lupus Erythematosus, which affects your internal organs. I was told in 2011 about the Discoid by a dermatologist. My primary doctor and a rheumatologist diagnosed me in 2012 with SLE. My initial reactions were confusion and anger. I wasn’t familiar with lupus and had no idea how I would be affected. I was angry because I thought, “why me?”
What symptoms were you having that led you to believe something was wrong?
I was extremely exhausted and had a constant ache all over my body. I had occasional swelling of my hands, feet and the top of my shoulders and around my collar bone. My hair had also started to fall out. I had a large spot near the crown of my head and two spots behind each of my ears. I couldn’t figure out what was going on. After some testing, I was instructed by my primary doctor to make an appointment with a dermatologist.
Were you familiar with lupus prior to your diagnosis?
I don’t remember ever hearing about the disease prior to my diagnosis. I definitely didn’t know anyone with lupus. After I was diagnosed I began to learn that many others have this disease…co-workers, neighbors…people that I saw almost every day.
Talk about your flares, the times when your symptoms get worse and you feel sick. When are they most intense and what you do to manage them?
My flares tend to become more intense when I am stressed or very tired. Sometimes the pain will make it difficult to move, focus or function. To manage my flares, when I feel one approaching, I know that it is time to slow down, de-stress and get rest. Depending on the severity of the swelling and pain, I see my rheumatologist for medication. Massages also loosen the tightness and knots of the muscles and relieving pain and stress. Hot soaks in the tub and a cup of tea also help. I try to do things that will re-charge my battery so to speak.
What tips to you have to help other women with lupus?
I am learning that every case of lupus is different, therefore, my tip is simple: find out what works for you specifically. Massages, hot baths and relaxation work for me. I find that doing what makes you happy takes your mind off of your pain and your situation, which makes you feel better. Make sure to take time for yourself. Let others around you know that you may need a minute to yourself from time to time. It’s important to reset your mind and thoughts for your well-being. I read somewhere that your emotional health can take a toll on you physically. The feelings and uncertainty of lupus have put me in a bad mood many days. I’m not saying that I act like the lupus is not there. I know it’s there. I feel it every day. I just try not to wear it on my sleeve or have it in the forefront of my mind. I take my medication, try to get as much rest as possible, focus on the positive and continue to move forward in my life.
You’re a mom, you work, you’re in school, you travel. How are you able to juggle all of that?
My day-to-day life varies. I could have a day that I am not affected as much by lupus. There may be little, but tolerable, pain. I am a single mother of a teenager that engages in school activities and clubs after school and on the weekends. I have a full time job that often requires long hours and I have just completed my Masters. So a full day would normally consist of sitting at the computer for long periods of time, tending to my daughter, dinner and preparing for the next day, most evenings completing my school work and sometimes running errands in the evening and definitely on the weekends. However, there are days where my pain and swelling are high. This causes my emotional state, motivation and energy level to be low which adversely affect my day-to-day life. Even though this makes me less productive, physically and emotionally tired, I still press on. I push myself and remind myself that it could be worse. Who knows how my lupus will affect me years from now, so, right now I am thankful and grateful to GOD to be able to do those things. There are some that cannot. This is why I motivate myself to look on the bright side and to continue to work on managing the symptoms of this disease and my feelings toward it. I do what I can, I listen to my body and know my limitations. BUT, I do not let Lupus limit me. We’ve been to China, Hawaii, lots of places in between and I’m taking a trip to Turks and Caicos. I would never say that lupus prevents us from thriving and living life to the fullest. I believe that with the right mindset and a solid plan to manage your lupus, anything in life is possible.
Want to support Zikaya and others living with lupus? Put on Purple on May 20.