Sue’s Story

My name is Sue. In 2006, When I was 35 years old, a very active mom to 2 teenagers, I started having an extreme unexplained amount of pain.  After several doctor appointments, with numerous doctors, several hospital visits, Emergency visits, rashes on my face, arms and legs, severe body aches, joint pain, muscle spasms, unexplained chest pains, exhaustion, mouth sores, headaches, muscle pains, and extreme depression, I had visited my ENT for the new extreme ear pain I was experiencing.  My ENT requested blood work to check my ANA.  He had me come back into the office and explained my ANA was positive and I needed to see a Rheumatologist, because he believed I had Lupus.  Confused, because I never heard of Lupus, I asked a lot of questions, what is this, what can I expect, how did I get this, is it contagious etc.  My Dr recommended me to a Rheumatologist to get all of the questions I had answered.  A few days later, I saw my new lifeline to fighting this disease, my Rheumatologist, where she diagnosed me with Degenerative Autoimmune Disease.  Still lost in what this meant for me and what I could do to feel better, she told me that she truly believed I had Lupus but didn’t want to prematurely diagnose me, as this diagnosis would change my life with my health insurance, life insurance etc.  After numerous tests and several months of getting no true answers, way too many drug trials, I had more questions than answers. I was getting sicker, and nothing was working.  Finally, after 3 years from the first onset of my symptoms, I was officially diagnosed with Lupus, and I was prescribed Lupus medication.  Devastated, I had no idea what this meant for me, but relieved that I had a diagnosis, and I was also hopeful this medication would “cure” me.  I found out quickly that there was no cure. I was diagnosed with 4 more autoimmune diseases, as well as complications from all the medications, and more illnesses that are associated with having Lupus.  My life was severely altered, the young vibrant mom of teenagers, always on the go was no longer. It’s as if I had to learn how to function all over again. I was more exhausted doing the things I loved to do before I got sick, I felt very depressed and didn’t know what was next.  Over the next few years, many drug trials, blood work, altering dosages and a lot of adjustments, I was starting to get some relief, my levels were stable, and I started to have hope.  The next 18 years have been a constant roller coaster of ups and downs, changes in medications, dosages, and seeing numerous specialists.   Who knew one person could see 11 specialists that all end in letters “IST”.  Although I may never be “cured”, I have learned to live with the daily pain and live my life to the fullest.  Lupus flares occur more often than I like, but by staying active, and doing my best to lead a healthy lifestyle, I am in a much better place mentally than I was when I was diagnosed at 35. This disease has taken a lot away from me but has also taught me so many life lessons.  Most important lesson I have learned is to stay positive!  Having a positive attitude and believing I can, being happy, enjoying those I love and truly appreciate the life I have, is how I go on every day, and continue to do my part to help raise funds for research and eventually one day to find a cure! #Noonefightsalone

• Lupus is a mysterious and misunderstood autoimmune disease. It strikes without warning, affects each person differently, and has no known causes or cure.
• Lupus symptoms can be severe and highly unpredictable and can damage any organ or tissue, from the skin or joints to the heart or kidneys.
• While lupus can strike anyone at any time, 90% of people living with lupus are women. Women of color are at especially high risk.