Lupus diagnoses day…1987
my dad, myself and my sister
Over the last month I have been dealing with some health issues. HUGE Kidney Stones that resulted from my anti-epilepsy medication. Recently I met with my Neurology team over at Temple University Hospital to discuss changing medications. While I have been dealing with stones for 12 years they have never been this bad and I’ve begun to be concerned with the state of my kidneys. By the grace of God tests show that my kidneys weren’t damaged. I need to stay on anti-seizure meds for the rest of my life. My neurologist and my kidney doctor have been working together to find one that I can take without too much kidney fanfare. After much discussion we found a medication BUT this one MAY CAUSE liver issues. I’m also a Lupus Warrior and I am already on a liver and kidney watch list but c’est la vie right. Scared doesn’t even begin to describe how I feel. Weekly blood tests to monitor liver and kidney functions, the process of weaning off of one medication while increasing the dose of another medication. At some point 2 anti-epileptic medications will cancel each other out and become ineffective, so I’ve been told. I’ve also been told I’ve been down this road before and I just need to have a little bit of faith. It is in that one word but everything comes together, FAITH.
FAITH…
Faith that I will be okay, faith that my body will do what it’s supposed to do, faith in the medical team that I have had for 25 years, and faith in my God because nothing else matters but that. Yes I’m scared. Seizures are a big thing. I drive, I walk, I have a business, and every time I get behind the wheel of my car and drive, every intersection that I cross is life threatening, but I choose to have faith.
I am often approached by people who ask me if they can introduce me to their friends, someone living with Lupus or Epilepsy, and I always say yes. The approach is always the same, their friend feels like they have no one to talk to, they feel so alone in this process. These illnesses, while they can often drain you, should never make you feel defeated. I am in a fight for my life every day. I choose a career path in photography that could potentially put me at risk everyday – flashes, strobe lighting, and heights. But I wanted to prove that I would not back down from a fight. I vowed early on these 2 diseases would not break me. They will not define my life and I consider myself every day a walking miracle. Because when your life begins with seizures and you never know when they are coming on you walk in faith everyday, you believe in God and trust that he is guiding your path.
