By Nakita Nicci
For those of you who know me, know I am the ultimate social butterfly but most importantly I am a Lupus Butterfly. I wear my purple colors loud and proud with a mission to inspire other women. I met a fellow butterfly, Jokiva Rivers on Facebook a few weeks ago. This beauty, caught my attention because of a post she wrote about a guy who called her ugly because she has short hair.
(Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years.)
One of the most common symptoms of Lupus is hair loss. After conversing with her, I discovered she 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.
I was able to chat with Jokiva and here’s what she said to say:
When were you diagnosed with Lupus?
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.
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 every morning faithfully but it can be so much meds to where I would have to take a nap and drink a Sprite, just to keep my meds down. I feel for people with my condition because we are too capable of living our old life like we wish we could. I pray and pray because God is the healer of all days. Yes I might have bad days but at least God lets me wake up every morning, and I rejoice that I made it another day.
What advice do you give to other ladies dealing with Lupus?
Ladies get lots and lots of rest. Please be constant with your medications and doctor visits. Do not let anything stress you out. If you have to cut people off so you can be stress-free and healthy, please do so. Nothing is worth losing your life over. Always believe and have faith. Keep a positive outlook on life. Take your time with everything you do.
Always get up and move. Whether you walk just for 30 minutes a day keep that blood pumping so you don’t have any blood clot problems because as lupus patients we are prone to blood clots.
Finally, don’t EVER feel like you are a burden. Lupus is a condition that you cannot control. It is NEVER your fault what you’re going through.
What motivates you to keep going?
I will not give up or let this condition beat me. This is just an obstacle God has placed in my life that He felt I could overcome so I will continue to do his work as long as I am on this earth.
I am currently in school for nursing but I am changing my major to teaching. I am currently married. I have been married since I was 18 and my husband is awesome. He is like one of the best supporters that I have. I would be in the hospital and he never leaves my side. I also have awesome sisters and a mom to stay and help me through my rough times. I currently dream for when I’m able to have a child because I’m hoping I could love a little bundle of joy and maybe my lupus can go into remission.
I want kids and to be successful. I don’t dream of a white picket fence, but…I love myself and when you love yourself, everyone else can love you as well.
Nakita Nicci is the host and creator of LANIQUE Beauty Bar. LANIQUE Beauty Bar, a division of LANIQUE Cosmetics is a web series showcasing Chicago’s Industry Leaders in Beauty, Health, and Fashion and let’s not forget Cocktails! www.laniquebeautybar.com
Have your blog delivered to you! Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.