2016 Year of the Patient
Lupus has manifested itself in different ways sporadically throughout my early life; I just did not know there was a name to it. When I was in preschool it was suspected that I had Sickle Cell Anemia. My playtime with classmates was limited because I was “sensitive to the sun.” During my senior year in high school, the hives that I had over my body was attributed to an allergic reaction. I was able to attend college at Wartburg and earn a degree in Social Work because I always wanted to help others. Since I decided to go into a field of work that was morally satisfying but did not provide much income I applied and was accepted into graduate school one year after completing college. I was attending graduate school at the University of Illinois at Chicago in 2001 when I began to experience pain in my knees, elbows, and chest. I found it difficult getting out of the bed in the morning and I was exhausted all of the time. I would experience mood swings ranging from happiness, irritability, and tearfulness. My mother and I went to my primary care physician when it became painful to breathe along with having difficulty dressing myself. At my doctor’s appointment I was told that I was being referred to a Rheumatologist because I have Lupus. I exhaled because there was a name to what I have been feeling; it was not all in my head. Despite the feelings of relief I was experiencing I was not prepared for the journey that Lupus was going to take me, my family, and friends on.
Initially I did not take my diagnosis seriously and Lupus does not like to be ignored. I was able to earn my Master’s Degree in Social Work in 2002 despite having a brief hospitalization. The Dean of Students of the program arranged for me to complete some of my studies from home. I was able to gain employment as a family therapist for a counseling agency in Chicago. I felt independent and invincible until April 2003 when I arrived at my Rheumatologist’s office being pushed in a wheelchair by my mother. The next time I felt fresh air on my face was one month later. Even to this day I do not remember all of the things that have taken place during the hospitalization. During that month I was admitted into the Intensive Care Unit at the University of Illinois. I was initially treated for pancreatitis and a blood clot that eventually travelled to my lung which caused a pulmonary embolism while in the hospital. I underwent a procedure to clean my immune system. I remember the loneliness and depression when visiting hours were over. There was one night during my hospitalization when I was comforted by God’s love. I gained at least twenty pounds from the water retention and high doses of prednisone. I remember the acne on my face from the prednisone and being afraid to comb my hair because my hair would shed. I started to feel sorry for myself and developed a sense of low self-worth. I would engage myself in unhealthy relationships because I felt that was the only thing I was worthy to have. My family would not allow me to feel sorry for myself too long, especially my grandmother. I stayed with my grandmother while recovering from my flare up and she would make me walk outside twice a day. I learned about a lupus support group in the area and later joined. I was able to meet other young people whom battled the disease. I studied and learned more about my disease. I also learn to love and accept myself. Once I did that God blessed me with a person whom have loved me unconditionally and advocated for me for the past twelve years. He has also given me the gift of motherhood.
A bad day for me is when I mentally have a list of things I would like to accomplish and my body is not in agreement. There are days when my husband has to care for our daughter because I am not feeling well. I feel a sense of guilt when I do not have the energy to play with our daughter. Due to taking prednisone for an extended amount of time I have cataracts in both of my eyes that reflect off the street lights at night. When there are weather changes, I experience body aches and fatigue. Due to being diagnosed with lupus nephritis, I retain fluid in my legs and ankles. Some of the medications I am taking are for side effects of an initial medication that I was prescribed. There are some symptoms I experience and I try to figure out the source of it (lupus v. getting older).
I try to see some good in everyday because it is another day of life God has blessed me with. I am very fortunate to have a wonderful support system. It is gratifying for me to express my love and gratitude for those whom cared for me throughout the years through prayers, kind words, love, and unselfish acts. Bonus days are spending time with my husband and daughter without falling asleep. I feel productive when I am able to help others at my place of employment. I feel great when I am able to treat myself to a yoga session or complete some errands. I feel fortunate when I am able to support my daughter when she is cheerleading or learning how to swim. I feel a sense of fulfillment when I am able to empower other with Lupus or other chronic diseases.
I am so optimistic that there will be a cure for Lupus. There is more attention that is being brought to this disease. There continues to be barriers to be knocked down and goals to be accomplished. Even though I am the one diagnosed with Lupus many people have accompanied me on this journey. This journey has taught me many life lessons and I have learned so much about myself. It is my hope that my actions will touch the people I have and will encounter in a positive way.