July of 1998 was the month and year that changed my life… I was only 16 years old and my world would turn upside down! One day I complained to my mother about feeling sick and cold. My mother took my temperature which seemed to be a little high and decided to take my blood pressure. Not thinking anything of it especially at my age, she noticed my blood pressure was a little bit elevated. There were no other signs at this time besides the high temperature and blood pressure until a butterfly rash popped up on my face a couple days later. My mother decided to take me to a family doctor who then recommended me to a dermatologist. At 16 years old, I was sure it was just something temporary and would get resolved soon. However, sitting in the doctor’s office, I realized that this may be more than just a “cold.” The doctor came in and looked at the rashes very closely and requested blood work to be completed as soon as possible. The doctor stated this may be a sign of Lupus. At this time, Lupus wasn’t very well known and it was uncommon to have Lupus at a young age. My parents weren’t aware of the disease and I wasn’t understanding what was going on until I looked up the disease to only find out that it was incurable.
After the results came in from the blood work, I was referred to an Internist, Nephrologist and then to Rheumatologist at the University of Michigan. Lupus was definitely a high possibility but being confirmed a Lupus patient didn’t happen until a month after I started getting sick. The disease is similar to other autoimmune diseases and since it was rare at that time to be diagnosed with Lupus at an early age, it took a lot of time, patience and testing with several doctors. A month later, we got confirmation from University of Michigan that I indeed had Systemic Lupus Erythematosus (also known as SLE). Being an athletic, outgoing and energetic child, I became very sick in a short period of time. My kidneys were inflamed from the Lupus flare so I was put on an I.V. treatment called Cytoxan (small dose of chemotherapy used for cancer patients to reduce the kidney inflammation). Before turning the age of 17, I had a kidney biopsy, steroid treatments (oral and I.V) and Cytoxan chemotherapy done. I gained a massive amount of weight, loss a lot of hair and became very insecure with my body. As a junior in high school and a growing teenage girl, I didn’t know how to handle the disease and never grew up as a normal teenager. The typical crushes, dates and sleepovers that a normal teenager would face was replaced with weight gain, 20+ pills daily and chemotherapy.
Living with Lupus definitely has not been easy… Every Lupus case is different and not one case is identical. As a very sick child, I experienced chemotherapy and the struggle of weight gain and image issues. During my college years, I had to go through hip surgery to save my right hip from collapsing (from the steroid treatment and lack of calcium). This prohibited me from walking for roughly 6 months until physical therapy treatment to learn to walk again as well as taking a year off of college. Determined to finish on time, I took more credits than the normal college student, worked as an intern at a financial stock firm, joined a co-ed business fraternity while treating my Lupus.
After graduating college in 2004, I decided to try and get in shape and lose some weight with the help of a personal trainer while job searching. After several interviews and being frustrated with the job searching process, I was offered a loan processing position with Quicken Loans. Unfamiliar with the mortgage world, I wasn’t confident with the job offer but my sister convinced me to accept the position. Being stressed with a new job right after college, learning a new industry that I was unfamiliar with as well as the pressure of the business made me want to give up. I knew I went through so much physically and mentally with the Lupus that I couldn’t give up on anything I worked so hard for. I also felt I couldn’t let my family down especially with everything they sacrificed for my health and education. On November 2004, I got in a very bad car accident that would leave me injured with a perforated large intestine, broken ankle, cut up and bruised skin all over the body as well as blood shot eye balls. The doctors kept me under surveillance for two days while doing several testings’ on me. The pain was so unbearable that I felt as though a knife was stabbing me in the lower belly multiple times. Later on, we found out that my large intestine was perforated and I would need a colostomy bag; if I didn’t get surgery right away I would die from the poison leaking out of my intestines. Without a blink of an eye, I decided to do the surgery due to the pain and the feeling of death.
The first time I saw myself after the surgery in the mirror, I remember seeing a monster – a girl with a moon face, blood shot eyes, twenty-thirty pounds heavier, bruised body from head to toe, a boot for my ankle and a bag hanging on the left side of my lower belly with a cut belly (from the lower belly to above the belly button). The feeling was unbearable… I complained so much about my image and now I had to live with what I was seeing in the mirror. At that time, I just thought I looked like a monster… bruised, beaten up and helpless. From here, I knew I had to fight through the pain, depression and sadness.
A year later, the surgeon was able to reverse the colostomy (the healing process was delayed due to the Lupus) and my life would start feeling normal again. I was still with Quicken Loans, working hard, being recognized as a hard-worker and top producer, when I decided to work remotely with the company in California in 2006 (2 years later I would work remotely in Las Vegas). This was the first time I lived on my own and away from my family. Although it was hard emotionally, it made me stronger, especially dealing with my Lupus on my own for the very first time without my family assisting me. I made a big decision to get off my Lupus medication and take my health into my own hands. I decided to research the disease on my own, speak to several different doctors and focus on my eating habits. Dropping weight, I didn’t really understand the importance of physical fitness & good eating habits to improve my Lupus and well-being until 2011. I knew Pilates and Yoga were great ways to strengthen my muscles and joints that the Lupus were effecting on a daily basis so I decided to join a gym and attend Pilates and Yoga classes. My physical activity would have to be limited since I wasn’t able to do any high intensity cardio workouts due to my left hip needing a hip replacement. The Lupus was pretty much controlled and even the kidney function seemed stable. I was slowly losing weight but didn’t build muscle until I found a new trainer to help me push my goals to another set limit in 2013. Sixty pounds later, I’ve learned what I need to do to help improve my Lupus, when to listen to my body, accept my appearance (although it is still a challenge) and learn to be happy with who I am.
Today, I still love the company I work for and am now an Underwriting Training Specialist for Quicken Loans. I love speaking about my Lupus and would hope to start a blog or write a book with my life experiences dealing with Lupus. I have a love for physical fitness and would want to be professionally trained in Pilates to help those in need that cannot afford classes as well as raise money to help families that cannot financially afford Lupus treatment.
Friends ask me why I bring up my Lupus so much since they don’t see me as a sick woman living with a disease… For me, I may be living with Lupus but Lupus is not stopping me from pursuing my goals and living life. The disease has opened my eyes to how lucky I am in life, how strong I can be as well as what I can help accomplish in the world. My friends say I am a strong woman and now I can see that I am strong because I have to be and I wanted to defeat all the odds. Although Lupus is hard to deal with at times and sometimes the pain and/or the fatigue are unbearable, I want to be able to be a warrior for all those fighting with struggles in their life. If I can be a role model and help change the life for at least one person in the world, I will always keep smiling and fighting.
Being a Lupus warrior will never define me as a woman. I am strong, independent, educated and love to help others. I love seeing the world, learning about different cultures and experiencing LIFE in all angles. Lupus awareness and education are extremely important so that one day we can find a cure for those suffering and living with the disease. Until then… I say keep smiling and let’s change the world for the better.