Nichole Marshall's Story

What were the steps leading up to your diagnosis?

I was a healthy child in school. After school, I went to college for two years and was still healthy. I never had a cold, flu, or childhood disease. Then around 1998 I started to notice some changes in my skin and hair. I had severe change to pigment on face, my hair was thinning and I was starting to have trouble with walking – it was arthritis. I was very fatigued and had lost my appetite.

So, I decided to go to the doctors in Charlottesville to see what exactly was going on. The doctors ran a couple of tests, and a week later I was diagnosed with SLE.

I had to take chemo treatments for a year. I lost all of my hair due to the treatments. I couldn’t even walk, I also had a miscarriage due to this disease. My skin has colorations all over. One day my heart failed. The doctors who examined me said I only had 10% of heart beat. I was hospitalized for 8 months. I was in the general hospital near where I lived, but they couldn’t keep me from getting worse and I was sent to Charlottesville, where I had to get two blood transfusions and other treatments.

I died twice. I can remember 20 doctors over me, tubes running everywhere, and me fading away slowing. Praying in silence, because I had no feeling in my body. I went to sleep. I accepted my life was over. Three days after that, I woke up and I was in rehabilitation in Charlottesville. I still couldn’t walk nor had any strength to do anything, not even feed my self. I was so helpless. You want to know the worst; they made me feel so disgusting. I had no one to wash me or better yet help use the bathroom.

Finally, my mom and stepfather came to see me and they helped me wash, eat, and sit up. I felt like I had a reason to get better again. When my mother came to see me she had news on my grandma, who also was hospitalized. That night I had to be rushed once again to the emergency room in Charlottesville. That night I couldn’t breath. I went unconscious. When I felt myself go, I kept saying to the Lord, ‘Please don’t take me, I have so much to do. I want to see my grandma again.’ I pleaded for my life to him. I begged for another chance. Guess what? He granted me that. My grandma died two weeks after I came home. I thanked God for giving me the strength to come home. He made me well enough to come say my goodbyes.

I'm still here. I am fighting this disease even harder. It didn’t break me, it just made me stronger.

What lifestyle changes have you needed to make?

My whole life has changed drastically. I was a beach person. I loved the summer. As a child, that is something that we did as a family. But because I am not supposed to be in the sun, my time at the beach has been very limited. I am not able to go out to events anymore because of the walking. I stay very tired at all times. I used to be a very outdoorsy, active person and now I am always in pain and cannot enjoy the things I love. I had to drop out of college one year.

I have to wear wigs now because I have lost all of my hair. My scars on my face have made me want to wear makeup because I don't want to be stared at or whispered about. Sometimes I feel like I look like something in a horror movie. I used to have pretty skin and long hair down my back. People when they see me they look at me funny, I hear whispers and I see heads turn. I laugh at them because they don't know my fight for life. I know God gave me another chance to live. I am the same person, the only difference is now I am a better person. Every day is a new lesson for me, I never know how tomorrow will be. All I know is I'm the Lord’s child.

Who has been there for you? How?

My mother (Louise Marshall) has played a big part of my life. She has been there from the beginning to the end. I also had a man named William Clark who was there for me when I had no one and was ready to give up on myself and life. No matter his situation, he was always there to do for me the things I couldn't do. And the man who I have now been with for 6 years, Phillip Harris. Unconditional love.

What accomplishment are you proud of?

I am proud of myself for not giving up. I went back to college and graduated from Liberty University. I was told that I could not have kids. I always wanted a baby. But, God blessed me by allowing me to adopt a little boy.

What's your advice to someone else living with Lupus?

Stay strong, listen what your doctors says. Never feel like you are a burden, because you’re not. Life has it tolls for everybody. God won’t put anything on you that you can’t bare. Remember, you are pretty!

Is there anything else we should know?

I was diagnosed 1998, a year after I graduated from school. It was very hard for me to accept this change in my life. A person who never had a flu, chicken pox nor a common cold. I was denial for so many years. It took almost dying, with 10% heart function left and being a vegetable on a hospital table to believe this was happening to me. I was angry and mad. I was confused and most of all I was disappointed. But, I went to God and I prayed and prayed. I wasn't ready to leave this world. I was still young and I had so much to do. I wasn't finished with life yet. That night on that table I realized I had a choice. Be strong! Don't give up!