The year 2014 was supposed to be my year of the hustle and journey to financial freedom – to some degree, it was. Little did I know that the grind, in addition to many other things in life, would come to a screeching halt.
Shortly after my 29th birthday in June, I became ill with what I initially thought was a summer cold. Although I visited countless doctors, they all contributed my symptoms to sinuses. With an optimistic attitude I decided to resume life as normal and began preparing for my trip to Vegas and Atlanta in July. During the entire trip I suffered through 102 + degree fevers, appetite loss, body aches, swollen lymph nodes, and an upset stomach. While vacationing, my doctor gave me the shock of a lifetime when she suggested I have a biopsy to check for lymphoma. I was upset with where my medical diagnosis was heading, but after weeks of being sick I was determined to find out what was wrong
Upon my return, my symptoms worsened. I could now add nausea, vomiting, and weight loss to the list. Sunday, August 3rd, I was emergency room bound with an overnight bag in hand. I was almost released by one doctor for the flu when another physician, thankfully, caught that my lab work indicated both my kidneys and liver were failing; therefore, I was admitted Monday morning. After a battery of lab tests ranging from Lyme Disease to HIV were conducted, and even one Lymph Node Biopsy later, I was diagnosed with Lupus.
My family, particularly my father, were visibly upset. Me? Not so much. This was just another roadblock to overcome. My childhood best-friend has lupus and my grandmother’s close friend passed away from it. While that would provide NO comfort to most people, it gave me a sense of relief, because (1) I knew what I was dealing with, and (2) It was familiar.
In the first few months I was able to mentally take it in stride, but later the physical stress caught up to me and later took its toll. A week off of work turned into nearly four months. After Rheumatologist hopping, adding a Hematologist and Gastroenterologist/internal medicine doctor to the “Lupie” army for newly diagnosed Hemolytic Anemia, plus the possibility of Multiple Myeloma and Gastroesophageal Reflux Disease (GERD), ol’ lupie was in full force. The Multiple Myeloma was later ruled out in November 2014 after a bone marrow biopsy. I was experiencing speech and memory problems, severe muscle atrophy, severe light and heat sensitivity, nausea, unbearable fatigue ironically coupled at times with insomnia, delusions, lupus fog, skin sensitivity, acid reflux and a whopping 35 lb. weight loss in the first few weeks.
Thankfully, despite depression and anxiety, I was okay for the majority of 2015; however, 2016 has been a different story. My kidneys are now a subject of concern again, but hopefully a pending nephrology appointment will provide much needed insight for additional treatment options.
Looking back, I’ve been showing symptoms for Lupus since I was a little girl but most notably in my post-undergraduate years with mysterious rashes, unexplained fevers and body aches, fleeting joint issues, fatigue and more. Between 2004 and 2011 I asked to be tested at least twice for Lupus and was blatantly ignored by doctors. I can’t stress enough the need for increased awareness. Immediate responsiveness leads to earlier (and better) detection and hopefully, one day, a cure. Over 1.5 million people suffer with this disease and the majority of them are women of color.
If you’re dealing with any form of lupus, know that you are STRONG. No matter how weak this disease makes you feel, you’re dealing with something that most people couldn’t bear to deal with on a daily basis. Regularly, we’re forced to face the idea of our own mortality, never knowing if an unexpected health decline health is awaiting us around the corner. But you, YOU, were built for this butterfly.
Chathya “CiCi” Chandler, 30, is a Tallahassee native and proud alumna of Florida Agricultural & Mechanical University. She is a Senior Auditor with the Florida Auditor General’s office while she simultaneously pursues entrepreneurial ambitions in makeup artistry and travel.
For More Information About Lupus, visit: www.lupus.org