Every summer my family, which included my 6 younger siblings, aunts, uncles and cousins, would camp for a week at our family spot at Salt Pond Beach Park on Kauaʻi's southwestern shore. It is one of my favorite places in the world. Kid and family friendly with protected ponds, natural clay, sea life and ancient salt beds which we are still pili (connected). There is a great big lawn with camping spots.
The summer that I graduated high school we had a big camp where extended families joined to celebrate my graduation and one day, in the middle of the day, my foot swelled to three times its size. My mom rushed me to the emergency room where I was admitted for tests and evaluations. The doctors were confused as to why it randomly swelled. I don't remember much about what happened at the time, but my camping trip was done.
I was released after they got the swelling down, though my doctor scheduled me for a kidney biopsy. I would have to fly to the next island, be admitted in a hospital overnight for the first time. My mom flew down with me but stayed at a hotel. It was scary because I didn't know what to expect.
I was to be given general anesthesia while they dig up some matter from my kidneys to be tested. I didn't know about the pain and discomfort of staying in a hospital bed with machinery beeping 24/7. Having my sleep interrupted by nurses checking my vitals every other hour.
A week later the results came in and I was officially diagnosed with Mixed Connective Tissue Disease, also known as Lupus or Systemic lupus erythematosus. I was pretty devasted because I knew I wouldn't have a normal life. Everything I do will now affect my body and overall health. I mourned my active lifestyle.
I realized that I'm going to have more scary experiences in the hospital, doctors and medications. I will be spending a lot of time in waiting rooms and filling out forms to highlight my medical history. This was 22 years ago.
I've long since learned what it is to be a Lupus Warrior. It means riding through the moments of depression, advocating for my overall wellbeing by learning all I can about each condition, finding the right doctors that truly cares, communicating everything, and listening to my body. My Lupus has been doing so well lately I'm riding this wave until the next storm comes.