Published on November 11, 2018
When we are diagnosed with an incurable disease, our life typically comes to a screeching halt. Daily life begins to feel like a never-ending rollercoaster ride, and we believe that is the way our life will be forever.
I am writing this blog article because I learned that I was wrong. I did get better, and the rollercoaster ride ended. The only problem was that I was afraid to believe it.
The unthinkable happened one morning. I woke up, and I knew it was time to get back to living a normal life. I was so shocked by this revelation that I decided to ignore it for a few months.
I had been consumed by my diagnosis of polycythemia vera. How does one deal with having an incurable disease? Of course, I was scared, then I freaked out, then thankfully I found Patient Power. Patient Power provided me with the platform to become educated about my disease and learn to advocate and educate others. I have been able to volunteer and work occasionally with Patient Power, and through that I have been empowered to advocate for myself. I received my care at one of the nation’s top comprehensive cancer centers, and I had a successful response to my immunotherapy treatment. I knew through my interaction with Patient Power it was in my best interest to shift my care to a myeloproliferative neoplasm (MPN) specialist that could help me manage my disease and symptoms and live a normal lifestyle. I learned about Dr. Angela Fleischman through Patient Power, and not only made the switch, we actually partnered up together to lead an MPN education group to empower others with MPNs.
Everything was going great! I was feeling better, my numbers were all in line, and I was so excited to be helping others with MPNs. I kept hearing a voice in my head—you are okay. You are ready to move forward and live your life again. I knew it was time to think about my career and return to work.
The only thing stopping me was fear. Fear I would relapse, or get too tired, or even have to tell my employer about my disease. I never really let fear stop me from doing anything in my life. I asked myself why I was letting fear stop me now. I decided I needed some more mindfulness in my life and started yoga. It was amazing how gaining more control of my mind and body through yoga allowed me to become emotionally stronger and face those fears. It was now time to take the step forward and return to a normal life and slay the dragon known as fear.
I decided upon a new career, got the job and took the plunge. The first couple of weeks, I kept waiting for the other shoe to drop and expected all of my symptoms to return. Of course, it never happened. I made sure to pace myself and build up my stamina. I had to remind myself daily that I was ready to return to normal, and not let my fears consume me.
I am now beginning my third month in my new career, and I feel so invigorated! I truly feel I am living a new normal—feeling more empowered to slay any dragon that comes my way! And, I want to share with you all that having an incurable disease does not always mean your life is a never-ending rollercoaster ride.
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