Nakita is a Lupus Butterfly. She wears her purple colors loud and proud with a mission to inspire other women. And when she met fellow lupus sufferer Jokiva, she knew she was someone special. Jokiva is the founder of the popular Facebook group; “The Real Housewives of Lupus,” a group for women with Lupus and a platform to network, vent and motivate each other to fight.
Here, Nakita speaks with Jokiva one on one about what living with and fighting lupus is all about:
Nakita: When were you diagnosed with Lupus?
Jokiva: I was diagnosed with lupus at the age of 18. I had a rash that looked like eczema and they started me on skin cream but the rash became worse and then I started to experience joint pain and they sent me to a rheumatologist where I was then told I have lupus.
What’s the biggest challenge you’ve faced since being diagnosed?
The biggest change I’ve had in my life since finding out I have lupus is how I live my life. I barely go out. I currently do not work or go to school because my condition is not so good right now and it makes me depressed at times because I want a normal life.
I used to hate to go in public because people would often look at me as if I was contagious and that was not the case at all. They did not understand that they were more of a harm to me then I were to them. It’s kind of hard to go out in society and want to be accepted for who you are and what you’re going through. People don’t understand unless you educate them about your condition because everyone’s lupus symptoms are not the same. I’ve met wonderful people whose condition is way worse than mine, and it hurts my soul that they have no real support team.
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Describe your daily routine.
Every day I get up around 8 in the morning and eat something real light on my stomach. But I don’t have a day-to-day regiment because I never know how my body will react that day. Sometimes I wake up to vomiting or in pain to where my day will not go as planned. It’s very stressful to plan things with friends and family and all because I may become sick.
I always tell people who are not aware of what I go through, that lupus is not something I could just hang in my closet and go to it when I want. I have no choice but to accept my condition which I have. I take my meds…