Hi, my name is Nikita and I am 25 years old this year. I thought I would share what lupus has been like for me, not to complain, but this shed some light on what it is truly like to live with this disease. I have been diagnosed with loop us in 2004 when I was 21 years old.
My older sister succumbed to lupus at the tender age of 14 in 1992, due to kidney and lung involvement. She was diagnosed with lupus when she was nine years old. We were really close growing up, we shared the same bedroom. I was really upset when my broke the news to me... It hurts a lot to lose not only your sister or your best friend on the same day.
It broke my parent's heart to lose their daughter at such a young age. I was nine when my sister passed away and I still remember that day so vividly as if it just happened yesterday. Seeing what my sister went through broke my heart, it was really a tough period of my life at that time. I remembered that times that my parents had to rush her to the hospital due to her serious flareup. I remembered thinking much I wanted her to get well. I prayed to God every night to take her pain away. I would fold paper hearts, out of bus tickets with little notes written in every single one of them, placing each one of them carefully in a jar.
I still remember the look in her eyes when I gave that to her, she hugged me and said that she loves me so much. I'll never forget that day. My sister was only a kid I keep on asking myself why this is happening to her... But I guess God has a better plan for her. Talking about her right now still brings tears to my eyes. I hope wherever she is, she is in a better place...
12 years after my sister passed on, history seems to have repeated itself, this time, I was diagnosed with Lupus. Saying what my sister went through, my whole world just came crashing down when I found out that I have Lupus too.
In mid-2004 I started feeling really tired and sore especially when I woke up in the morning. My joints hurt so bad that I couldn't even dress or undress myself. I still remember a time where I had to cut my top off ticket out of it because I didn't want my dad or mom to worry about me. I knew something was seriously wrong with me then. I felt like a useless person, not able to do anything for myself.
I went to see the doctor and they did a lot of tests on me, finally narrowing down to either rheumatoid arthritis or SLE. All the results came back the next day and I was called in by my doctor and to my horror it was SLE. Doctor prescribed me with some steroids called prednisone and started me on hydroxychlorquine.
I was really lucky, far luckier than my sister. I didn't suffer any major pain except during the early stages of the lupus when I didn't know I had it. That's when I realized the importance of my limbs. I also didn't suffer any of the side effects from the steroids like the moon face or the hair loss. I finally was taken off the steroids in 2006 and my lupus has been in remission ever since. Compared to what my sister went through, what I went through was nothing. I believe my sister is looking out for me and protecting me from wherever she is right now. I am really lucky to be as healthy as I am right now. Honestly I don't feel like I have lupus at all. I have a great life, and a great loving husband, a pair of great understanding parents there's really nothing else I can ask for.