Sweet Silver Lining: "I'm a Purple Girl Too"

Yesterday, was the Walk for Lupus Now event in San Francisco that was brought together by the Lupus Foundation. It is the first time I've ever been surrounded by so many people who are affected with Lupus, and where everyone knew what it was. No one was scared of it, and everyone was celebrating the fight people who suffer from this disease put up everyday and as well as coming together in order to find a cure. As I was face painting, I was able to pick up bits and pieces of people's stories and own personal journeys with Lupus. It was inspiring to hear how different people cope with their illness and how they've adjusted to Lupus. Probably the most touching moment for me was when a little girl who couldn't be more than 5 or 6 looked at me with her tired eyes and told me that she was a purple girl, indicating that she has lupus. I had to hold back tears because from personal experience, I know the uphill battle that this little girl has to climb. That innocent face shouldn't have to deal with the cruelties that Lupus can bring. Hearing everyone talk about their own personal journeys made me realize that not many people in my life besides a few family members and Rose and Kelly really know what I go through, and what my story is with Lupus. Everyone knows I have Lupus, but not many know my journey. The stories of others have inspired me to have a renewed strength in order to fight and live my life and reach all the dreams that I have that most have deemed to be the impossible because of my condition.

I was in middle school when I first started to feel the symptoms of Lupus. I had just moved to Sacramento, and was really stressed out with the move, trying to fit in, and having to sing a solo in a play I was in. I found my way in the popular click and was doing things that I knew were morally wrong like making fun of others that weren't part of our group or making it a point to exclude people and laughing at those that were already humiliated. I never instigated any of the bullying but I never stopped it either. I think that's why I kind of cringe when people today tell me I'm a good person because I always think back to all those moments I made someone feel less about themselves. I was really struggling with who I was becoming and felt really stressed out with everything that I was dealing with. I think all that stress finally took a toll on me and triggered my Lupus flare because I remember riding the bus home from school and started to feel the joints behind my knees tingle and by the time I got off the bus, the tingling feeling became a really bad burning sensation as if I did leg curls endlessly. I felt completely wiped out walking back to our apartment and I remember being so exhausted that I couldn't even hold the key up to unlock the door. My body was so weak and jelly like that it took two hands for me to hold the key to the lock and unlock the door. I threw my bags down and took a nap hoping I would be better afterwards. I woke up at around 8 pm and I remember screaming in pain because every single joint and muscle in my body was on fire. I remember yelling for my mom and feeling helpless because she wasn't home from work yet and I was in so much pain that I couldn't get out of bed. The pain had become so intense that I was completely paralyzed on my bed blacking in and out of pain. I honestly thought at that moment I was going to die because I started having flashbacks of my life and everyone says that the moment before you die, that's what happens.

The next thing I can recall from that day was laying in the backseat of the car while my mom drove me to the emergency room. I guess by then my mom had come home and was worried about my condition. In the emergency room I continued to black out from the pain because they wouldn't give me anything until they found out why I was in so much pain. When they couldn't say for sure what was wrong with me, they released me with some pain meds, and finally the fire in my body had subsided. I thought it was finally over and my problems had been solved. I was still tired when I went back to school, but I felt no pain, so to me life was good. A few weeks later, still completely fatigued, I remember laying in bed and starting to feel the same tingling feeling in my joints again. I knew this time what was going on and started to cry. I took the pain meds that were prescribed and hoped that it would make it go away. But it didn't work and pretty soon I was feeling the same burning sensations in my joints again and I felt like I was being suffocated this time. My mom wasted no time and took me to my pediatrician again so we could get some answers. I remember laying on a gurney while my mom and pediatrician told me to try and sleep because I had been up all night. I heard my pediatrician say that she had a feeling that what I had was Lupus and referred me to UCSF where they have a Pediatric Rheumatology that could diagnose me for sure.

My mom and I were at UCSF in no time in order to get a diagnosis. I remember sitting in the room when the Doctor told me that it was confirmed that I had Lupus, and they needed to admit me into the hospital to check my organs and make sure no damage was done yet. I was relieved when they told me I had Lupus. I'm sure most would feel despair or sad, but I just felt that now they knew what was wrong with me, now they can fix it. If only it could have been that simple. The next days I spent in the hospital are the days that have been imprinted in my mind. Each day, a different doctor, specialist, and counselor came in to brief me on Lupus. They told me there was no cure, I was going to be on medication that will make me gain weight, and I had to be careful with getting sick because my immune system is over active and I will have a tough time with fighting off viruses and bacteria. They told me I had to avoid stress, stay out of the sun, and one doctor told me a story about this girl who was pushed in gym class and she fell on her side and broke all her bones that she fell. I walked out of the hospital feeling no hope. They told me the biggest thing to avoid was stress, but I was 13. I wasn't even in high school yet, how did they expect me not to be stressed out? I remember sitting on the couch at home and feeling like I had no future anymore.

But I have a future...my life might have different hurdles and obstacles that I have to navigate my way through, but it's still doable. Yesterday gave me even more proof that I can have a future like everyone else. It sounds cliche but if there's a will there's a way. If I keep getting sick and dropped from classes, there's online classes for me to take to get around that. If I can't be in the sun, there are hats, umbrellas and I live in the City of Trees so I can walk under the shade. If my doctor won't medically release me to work unless there are restrictions, then find a job that will be okay with those restrictions. The point is, I gotta keep moving forward because I told that little girl that everything will be okay. I'm not one to go back on my word, and I want to make sure that if I am ever to run into that girl again, that I can give her hope and ensure that things will be okay.