"I have Lupus it does NOT HAVE ME"| Nefertiti's Story
Updated: Jul 31, 2019
As of recently I have been reaching out to others with chronic conditions that have altered their appearance and/or transformed their lives in various ways. The intention of this is to create an open dialogue about these conditions, some of which are often overlooked or forgotten about. Repeatedly people such as myself and millions of others suffering from these underdiscussed illnesses can feel isolated -which is what I am aiming to to change. By reaching out and sharing the stories of people suffering from chronic conditions we can raise awareness, help others who have just been diagnosed see how someone with the same conditon has coped all the while creating a possitive space and supportive network.
I came across the Instagram account neffnjoilife at the beginning of February. She regularly posts some of the most beautiful inspirtational and strength quotes I have seen. She also posts pictures showing her scars; a result of her fight and survival with Lupus. I had a feeling that Nefertiti's story would be one of courage and strength through her illness so I reached out to her and requested that she would share her story here on Skindeeply. She so graciously agreed (thank you!) . I respoded by sending a questionaire of sorts (almost akin to an online interview). Below is the dialogue of said "interview":
Nefertiti's Story | Skindeeply
Tell us about yourself! What is your story? What do you? What do you enjoy? What defines your badass self?
"I am an amazing brave strong woman who’s been through hell and back dealing with Lupus since 1996. I was diagnosed while pregnant with my first child and a senior in college at Grambling State University. I was determined that nothing was going to stop me from graduating with my BS in Accounting. With the support of my mother we both decided that we’ll get through this together. My motto is: Yes, I may have Lupus but Lupus doesn’t have me! I live my life and deal with Lupus as it comes."
What is the name of your condition? How long you have had it? What does it do to your body physically? How did you feel when you first got it? and how has it impacted your life?
"I was diagnosed with Discoid Lupus (totally skin related only) in 1996. No issues other than fatigue from prolonged sun exposure and a few scars on my face, nothing too serious at that time.
I ended up having my first child, Christin, in September of 1996. I was advised not to have anymore children because of having Lupus but we (myself and fiancée at the time) wanted one more. We ended up getting married in 1999 and I had my second son Aris in June 2000. He was born without any issues as well.
It wasn’t until 2010 that my health took a turn for the worst! The left side of my face swelled and I didn’t know why so I went to ER and I was told the Lupus has made its way internally therefore I was diagnosed with SLE that had started to attack my kidneys which led to sepsis (a severe kidney infection). During this period I started to feel very bad; always in constant pain, very fatigued and just awful."
How have you "wrestled the beast" that is Lupus? What steps did you take to cope with and manage your condition?
"I managed to cope by continuing to keep my faith. My faith has kept me strong mentally. I made a conscious decision to fight for my life.
I attempted to change my diet to preserve the minimal kidney function I had left. I was in horrible shape and started to lose weight. I went from a size 6 to 0 and I lost all of my hair which was a major blow to my self esteem. Eventually I researched hair replacement options and moved forward. I was a working mother in the corporate workforce so I had to “woman up” and handle whatever was thrown my way because life still goes on! I refused to be defeated and have pity parties that’s not my style I try not to even give Lupus attention or power over my life! But over time I lost the battle and had to undergo dialysis in April 2016. I was called by my doctors to get to the ER immediately to start dialysis. This was the beginning of the REAL fight.
Dialysis is no joke. It’s the process of filtering all the toxins out of the blood and then putting the blood back in the body. This process lasted 4 hours each day. I had to have it done Mondays, Wednesdays and Fridays. I really couldn’t stand this but it was my lifeline without it I would’ve died. However, I was placed on the transplant list in February 2018 and lo and behold I received a kidney in June 2018! This was the best news ever because the normal wait time is 7-9 years for California. I only waited 2 years. Praise God!"
Has having Lupus affected your self-esteem? What ways have you been learning to love and look after your body?
"After receiving the kidney transplant my self esteem was even better! I’ve always been a positive happy person who loved to laugh but this made me realize there’s purpose to my life.
Healing is my focus. I’m in better shape and eating cleaner. I’ve gained most of my weight back, I’m exercising, walking 45 minutes 3 times a week - Life is good! I’ve been through the ringer but I’m still here! My spirit still shines and I’m truly happy regardless of what I lost."
How well do you feel the media and popular brands represent people who live with your condition day to day? Do you feel there is enough representation of chronic conditions or Lupus in the media?
"Lupus Awareness has come a very long way. In 1996 Lupus was unheard of but over time the word started getting out! Lupus Foundation of America, LupusLA, Alliance for Lupus Research and The Howse Lupus Foundation and others have all made great strides in the Lupus community. I’ve benefited from all their support. We do need more media attention! I would like for Lupus Awareness to be on the level as Breast Cancer. We NEED A CURE!"
Finally what advice would you like others with your condition to know? and what information do you have for people who don't understand your condition?
"I would like others to know that you CAN live a semi-normal life with Lupus! It’s a mental game and you must have a strong mental fortitude to handle it. Take the meds, try holistic options, eat cleaner, exercise and LIVE anyway! You must remain strong and never give up! "
"I’m worth the fight! I have Lupus it DOES NOT HAVE ME! "
Huge thank you to Nefertiti for giving me the pleasure of sharing her story. You can follow her on instagram @neffnjoilife. To anyone out there beginning or in the midst of their own battle with Lupus I hope you found this post helpful. Share this post so we can reach others with Lupus and educate those without it. I have learned so much about Lupus from this story. I am sending love and positive thoughts to all the #LupusWarrior and #LupusSurvivor people out there.
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