Thirty-One Faces of Hope: Sarah Ray
The lupus community includes people living with lupus, friends, family, and supporters across Georgia. For Lupus Awareness Month, we would like to highlight some of our lupus heroes and champions.
Meet Sarah Ray
In October 2016 I experienced a traumatic car accident. I was t-boned by a city bus on my way to pick up my sister from the airport. That October night is when my lupus story began. Thankfully, I was not injured during the accident. I only lost material possessions although the stress that I dealt with in the months to follow almost broke me. I was experiencing the worst stress and anxiety I’d ever experienced in my life. Ultimately, I started to feel physically ill. It started with the joint pain. It was so severe I didn’t want to move or get out of bed. I then developed vertigo and red blots all over my skin. Being young, in my mid-20’s, I figured I had caught a bug and it would pass. Eventually it did although I never felt in good health. A few months later I developed chest pain. I tried all the remedies, but the pain wouldn’t go away. It became so intense I couldn’t breathe, and my only relief came with leaning forward. When I couldn’t take the pain anymore, I went to the emergency room to discover I had endocarditis. I had no idea why I would develop such a symptom, and to be honest the medical doctor at that time wasn’t much help either. I was sent home that night still in pain with no medication or treatment to assist. After visiting my primary care physician, I underwent an echocardiogram and treatment for endocarditis. At that moment I only knew that was the worst pain of my life. I had no idea much worse was to come.
I can still remember how it felt to sit in the hospital bed hearing but not hearing the doctor explain my diagnosis. I was overwhelmed with emotions. Primarily fear in the unknown and relief in there was a reason for my pain. The pain is what I remember the most. Each time I’d go to war with my lupus I was left with scars. At the end of 2016 everything hurt. My joints hurt to the point that I couldn’t bend my legs or lift my arms. Walking was exhausting. Pleurisy was so intense every simple life task became an effort. I had no choice but to go to the hospital. Once in the emergency room I was what is called a “direct admit” (my first of many) into the hospital.
Everyone experiences lupus differently. For me, lupus attaches my major organs. In 2019, not long before the pandemic, I traveled to San Diego for a work conference. I knew I was feeling bad but when living with lupus while being treated incorrectly I’d developed a high pain tolerance. Upon arriving walking and breathing became impossible. My sister, a healthcare professional, accompanied me on the trip for a sister’s getaway. Worried that I wasn’t experiencing a normal flare up she petitioned me to go to the emergency room. After much debate I conceded for her peace of mind. As soon as I arrived to the emergency room check-in desk I was sent immediately to the back. I remember looking up with all the doctors and nurses standing around my hospital bed. Asking about my symptoms, attaching IV’s in my arm. All while a man in the bed next to me laid there with a bone sticking out of his leg. I knew at that moment that whatever was going on with me was life threatening. And that’s when the doctor informed me, I had a massive pulmonary embolism. It was causing my heart to go into distress, kidneys were failing, and my lungs had collapsed. I often think back on that moment in my life. Staying in an intensive care unit for days. My sister being set up in a house for families of critical patients and wondering if that moment was the end of my story.
During my hospital stay I was diagnosed with an illness that is associated with lupus, antiphospholipid syndrome. A disorder that produces blood clots like the life-threatening one I experienced. Although I never want to experience that pain again, I am eternally grateful. I survived. I survived to live life with my eyes wide open. I used to hide the fact that I have lupus. Being a woman in a leadership role I never wanted to appear weak. But I learned after being moments away from losing my life that because of my lupus I was the opposite. I am a fierce woman warrior. I wear a necklace everyday now with the word “fierce” to remind myself in moments of doubt the power I possess. To remind myself that we grow through what we go through.
Lupus has changed my life forever. I receive infusion therapy once a month, get my blood checked every week, take 20 pills a day, and I have 7 doctors I see on a regular basis. Despite all this I live my life towards the sunshine. My story isn’t over, it’s just beginning.
Thank You to Our Generous Sponsor
Choosing to prioritize your kidney health might be uncomfortable, but the reality is that up to 30% of people who live with lupus nephritis may experience kidney failure, which can lead to dialysis or even a kidney transplant. Luckily, there are steps you can take now that may help, such as scheduling routine tests and asking your doctor about treatment options. Talk to your doctor to learn more about routine testing and treatment.
Learn more about their GET UNCOMFORTABLE campaign.