THE 9TH ANNUAL FLIGHT OF THE BUTTERFLIES
Butterflies of Hope Warrior Stories
Flight of the Butterflies, Butterflies of Hope Warrior Stories is a lupus awareness campaign sharing stories of the brave lupus warriors. Many don’t understand lupus until they hear the walk of a warrior. Flight of the Butterflies, Butterflies of Hope Warrior Stories is dedicated to sharing those stories in May for lupus awareness month.
Flight of the Butterfly Lisa Klink
My Lupus story begins at a unique place, as it starts before I was born. My grandfather, Carmen, began to suffer from unexplained ailments in his 50’s and 60’s.He became plagued by both heart and kidney disorders that led to a sharp decrease in his organ function. By the time he was 60, he had suffered his first stroke. Yet, it was still undetermined what the root cause of the medical problems were. In 1989, when my mother was 3 months pregnant with me, my grandfather eventually died of congestive heart failure. Determined to find an answer to years of mystery, my grandmother received an autopsy that discovered my grandfather’s congestive heart failure was a direct result of Systemic Lupus. My grandfather went his entire life without treatment for this unrelenting disorder, and unfortunately, it claimed his life. He was just told he was going to be a first time grandfather before he died, and in an instant, that joy was taken from him. He never got to meet me, his first and only granddaughter.
Fast forward 30 years later and I am a successful middle school teacher who has been working in her career for nine years.I’m happily married and the proud mom of three fur-baby dogs. As usual, I am driving to work on a cold November morning. As I’m driving, I start to feel pain in my upper back and chalk it up to stress. I take a typical over-the-counter pain reliever and go about my day. Little did I know, this pain would not leave me. I began to wake up every morning feeling stiffness, soreness, and burning pain in my upper chest, back, and extremities.On more than one occasion, the back and chest pain became so uncomfortable that I went to both urgent cares and the emergency room thinking I was having a heart attack. Unfortunately, my symptoms progressed day by day to dizziness, heart palpitations, brain fog, insomnia, and extreme fatigue. Thus began a journey of 10 months, 8 specialists, and a hell of a ride to advocate for myself.
I can remember visiting a neurologist, cardiologist, orthopedist, physiatrist, psychiatrist, endocrinologist, pulmonologist, and rheumatologist from December 2019 to August 2020. For the most part, all the doctors could tell me was I had overused my shoulders, my neck was too straight, and that years of my previously diagnosed panic disorder had been causing me physical and mental stress. I knew in my heart that this was not the true cause. Going with a gut feeling, I searched into my family history to see if something could be linked. I knew that the only relative with an untimely death in my family was my grandfather.I immediately identified his cause of death as Lupus and researched online what doctor I should see regarding that condition. Upon making and then attending my first appointment with the rheumatologist in February 2020, she agreed with me that I did not fit the immediate ‘warning signs’ for a Lupus patient. I was told most Lupus patients first present with rashes, joint pain and swelling, and sun sensitivity. I had experienced none of this and from the outside, I appeared completely fine.
However, my rheumatologist of course ordered multiple blood and urine tests to check for other signs of the disorder. Upon reading my blood results, my antibody (ANA) panel came back positive for low titer indications of Lupus. However, my doctor felt that this number could be a false positive so she suggested I take a blood test called AVISE, specialized for the discovery of the specific antibodies that cause Lupus.
Then, the COVID-19 pandemic hit. This placed a big halt on all of my medical testing and I did not go back for the AVISE blood test immediately. Part of the problem was there were months in which medical offices were closed, and the other part was my fear that this disorder could actually be within my body. My next appointment with the rheumatologist was in July, and I waited until August for the results of the AVISE test. On August 31, 2020, through a virtual office visit, my doctor delivered the news that I tested Tier 1 positive for Systemic Lupus on the blood test. There was no going back- my life had been changed in an instant. I had become a person with a disability all in a whirlwind of a second.
It’s hard for me to completely explain in words what it felt like to hear that diagnosis. Time stood still and my eyes welled up. While completely distracted in my own internal thoughts, my doctor tells me that I will be taking Plaquenil for the rest of the near future to lower my mortality rate and that constant health monitoring is now part of my daily life.My heart was absolutely shattered.
Fear, anger, and sadness are normal parts of the grieving process. But in multiple days of pity parties and deep thought, I realized something. My grandfather went his ENTIRE life without any knowledge of this disorder NOR treatment for it. He suffered and died without an answer. How lucky am I that his story potentially saved my life? I found out I had Lupus within 10 months of the onset of my symptoms while many patients wait years upon years. Some like my grandfather, never receive an answer until it is too late.
I often think about the fact that my grandfather, whom I have never met, gave me the greatest gift of finding this disorder quickly so I could have the best chance at life. I am extremely saddened that I can never hold him and thank him face to face for his sacrifice. He is my reminder that as a Lupus patient, we stand on the shoulders of giants in the image of the surviving patients and those that have passed of this disorder before us. In 2020, we have advanced medical testing and care that well surpasses that of 1989. I am thankful and try to remember this in every frustration of every symptom I encounter. It is not an easy road, but I am at peace knowing my advocacy for my health care, based on my grandfather’s story, led me on the road to recovery.
Although I am in the early stages of treatment with Plaquenil, I am hopeful this will work and ease my pain. However, I know that taking care of my mental health is just as important as my physical health. Part of this healing process was my discovery of the Lupus Foundation and all of the resources they provide. I was very delighted to have easy access to a website that was designed for all the needs of a newly diagnosed Lupus patient.
One of the first decisions I made with the Lupus Foundation website was joining the virtual Walk to End Lupus for my area. I was instantly connected to Jessica Orr, LFA Northeast Development Manager, who graciously called me to hear my story, get me connected with another patient for support, and cheer me on as I started my fundraising team “Shut the Flare Up!” For the first time since my diagnosis, I felt incredible support and hope for the future of my disorder. I am very thankful to the LFA and all of their members for helping me through an incredibly difficult time. I absolutely cannot wait to walk in head to toe purple in celebration of myself and in memory of my grandfather. The LFA has provided me with the tools I need to find comfort and strength in my own voice.My voice roars in commitment with the ‘Purple Army’ in sharing our stories, educating those around us, and advocating for a cure!
Lupus In Color is excited to present Lisa Klink’s story to the world. As a Lupus Warrior she is actively promoting lupus awareness and wearing the armor of strength in doing so.
Lupus In Color Salutes you Lisa Klink. YOU ARE BRAVE, COURAGEOUS, AMAZING and STRONG TO SHARE YOUR STORY.
YOUR BUTTERFLY WINGS ARE FLUTTERING, YOUR CHIN IS UP, YOUR ARMS ARE EXTENDED AND YOUR CHEST IS OUT! FLY ON BUTTERFLY!
PLEASE SHARE Lisa Klink’s FLIGHT ON YOUR SOCIAL MEDIA PAGES AND START HER BUTTERFLY JOURNEY SPREADING LUPUS AWARENESS!
#LupusInColor #ButterfliesofHope #FlightoftheButterflies #Brave #Courageous #Strong #SpreadLupusAwareness #LupusWarriorStories