Prior to developing cardiac sarcoidosis in 2007, and the ensuing heart failure, pulmonary hypertension, numerous prescription drugs and the fatigue that comes along with all of that, one of the things my wife and I enjoyed was long road trips. We would get in the car and take a five hour drive down to Washington DC to take our pup for a walk in her favorite place on the Mall, then hop back in the car and drive back.
That all came to an end when the medications I am taking were not only keeping me alive, but contributed to my not living life to the fullest. I was constantly tired. The powers that be said that taking long road trips were no longer advisable. I needed to be near by my doctors because my case is so complicated, if anything should happen to me, doctors unfamiliar with my case would not now how to handle it. So I listened an I stopped doing one thing that I really enjoyed. Driving. I love to drive. It’s recreation for me. The best part of trip is the drive there. For me it’s not so much about the destination, but the journey there.
This January I decided to reorder my medications. I realized that the way my medications were being taken I was not living to my fullest potential. Every day, after lunch I was useless and needed to take a nap. I was old before my time. So I sat down with pen and paper and made out a chart of my medications of what made me drowsy and I played around with them. It took some time as certain medications needed to be taken away from others otherwise the side effects could be dire, but after a while, I worked it out to benefit me. I made the schedule work for me instead of the medicine scheduling me.
I started to take my meds in the new order I designed that was best for me and it worked. Less and less I needed to sleep in the afternoon. No longer was I always looking at everyone with crossed eyes, trying to be alert, awake, alive.
And we did it. We took a road trip last month with my mother in law and two sisters in law. Five of us piled into our car and drove to Baltimore to see our niece’s brand new baby, a precious little life that I got to enjoy with my wife. We went for a walk, a long walk on Baltimore’s inner harbor, at night. A view so beautiful, on a warm, clear summer night, it warmed my heart. I was feeling alive again. I realized more and more as the trip progressed that I was just existing. I was existing just to take my next dose of meds. I was not living.
Next day we drove to DC and visited the Basilica and Arlington cemetery. That night we went to the Lincoln memorial and the Vietnam memorial and were caught a severe thunder storm that amazed me as we sheltered in the Lincoln Memorial. I stood watching the rain fall horizontally with high winds bending the trees on the mall and marveled at mother nature at her fiercest, as we stood in the protective shelter of one of man’s finest construction dedicated to freedom and equality.
Next day we left DC and drove to Annapolis, were we walked the streets well into the night, along the water’s edges, watching the lights reflect and twinkle on the calm waters, a cool night’s wind brushing our faces. I was even more alive again. I had not felt this way in five years. I saw with new appreciative eyes, inhaled as if my lungs had not a single scar upon their surface, and walked up inclines as if the heart that beat within my chest still had the strength it possessed prior to August 2007. Yes I did have to stop and catch my breath on occasion, but I was not walking with an oxygen pack on my back with plastic lines leading from my nose. For those three days I felt free of my illnesses. Yes they never left me, but for a brief time I left them. I did not think of them, doctors, tests, encumbrances, what I could or could not do. I was alive.