Providing Answers, Support and Hope in Pennsylvania, Delaware and Southern New Jersey
June 24, 2007 changed my life forever.
I was sitting in my chair and had pains in my left leg. As I got up to try to relieve the pain, I immediately fell. I managed to get myself up, woke my husband up, and told him that something was wrong; I wanted to go to the emergency room. From the emergency room I was air lifted to Philadelphia. The next day I was still experiencing pain in my legs and asked the nurse if I could get up and walk, and as I stood up, my legs gave out. Several tests were performed, including a spinal tap. I never thought in a million years, that at the age of 39, I would receive a diagnosis that would have me confined to a wheelchair, paralyzed from the waist down, and told that I may not walk again because I have Systemic Lupus and Transverse Myelitis.
I had never heard of either one of these diseases, and the only thing I could remember at the time was the Rheumatologist telling me and my family that my illness was very serious and that they have to use the most aggressive treatments possible in order for me to get well, but I will be going home at wheelchair level so begin preparing the house for wheelchair accommodations. After spending 3 months in the hospital, I went home to begin learning how to adjust to living life in a wheelchair.
My son was 12 years old, and had trouble coping in school, and my husband and other family members also had a very hard time coping and adjusting to our new family lifestyle. How did I go from being a healthy, independent woman who worked, and played sports, to someone who now needed care with bathing, dressing, meal prep, and basic daily tasks 24 hours a day, 7 days a week? I did not know if I would walk again, but my only prayer was to be able to stand up when my son graduated from high school in 2012. Through extensive therapy, faith, prayer, determination, and maintaining a positive attitude, I have gone from a wheelchair, to a walker, to arm crutches, and now to using a cane. And the best news is that I was able to stand up and cheer when our son graduated from high school in 2012!
After being diagnosed I participated in my first walk in Ocean City, NJ. Seeing the number of lupus participants, I was overwhelmed with emotion, knowing that I was not alone. I was determined to learn more about the organization and be a voice and support other people living with lupus, as well as educate those who have never heard of this cruel disease. I have participated in all of the volunteer training courses, am now a Support Group Facilitator, and haven’t missed a walk yet. I try to volunteer and be a voice for the lupus community every chance I get. No one should go through this disease alone and we need everyone fighting to find a cure.
