On my way from the physician’s office that afternoon to the pharmacy to purchase my bag of medications (trying to figure out what just happened to my life), I decided to take one last bike ride. As I rode that afternoon, still feeling strong from the countless hours of training, I suddenly realized that I would never feel this way again.
I always believed that I was blessed to be able to ride and race my bike and never took a single ride for granted. Throughout my medical treatment, I leaned on friends, family and lessons learned from training and racing to provide me with the positive attitude I needed to overcome this disease. Although I practiced a healthy lifestyle prior to diagnosis, I implemented a revised health and meditation program that would maximize the treatment I received.
After nearly three years of intensive treatment under the careful watch of Dr. Sergei Grando at the University of California, Irvine, School of Medicine, through healthy lifestyle choices and with the incredible support from friends and family, I’m in remission.
Dr. Grando again cautioned me of the factors that could contribute to relapse, which included physical stress. He assured me that should I choose to return to training and bicycle racing, my remission would most certainly be brief.
I realized that a healthy lifestyle incorporates exercise, which of course would be moderate in my case. With Dr. Grando’s approval, I began cycling again. As the months passed and my fitness slowly began to return, I realized that I was capable of doing more than I or Dr. Grando believed I could. However, I battled with the constant fear that my exercise program would trigger a relapse, which created unnecessary stress.
I connected with the IPPF and spoke with Victoria, a Pemphigus patient who told me about her running and physical activities. We shared our stories and were surprised and encouraged to learn that we both successfully live moderately active lifestyles while in remission. We agreed that exercise contributes to a variety of health benefits in addition to our sustained remission. My conversation with Victoria simply changed my life and gave me confidence that I could live an active lifestyle, which further contributed to my emotional well being. I’m certainly much slower and I don’t go very far, but I cherish every pedal stroke!
Once I realized that I was capable of a level of physical activity beyond what I previously expected, I began to experience the calming meditative qualities that exercise provides. Simply, moderate exercise reduces stress. While this is certainly not news to anyone, it’s critical for Pemphigus patients.
It was at this time that Victoria and I realized that a healthy program integrating sound nutritional choices, active stress reduction and moderate exercise would greatly benefit Pemphigus and Pemphigoid patients
Chasing Down Pemphigus and Pemphigoid is a program intended to provide hope and a new perspective to the patient community, raise funding for critical research studies, awareness and patient support programs while promoting active, healthy lifestyles as a critical part of disease management.
The Chasing Down Pemphigus & Pemphigoid program is an ongoing campaign that challenges every patient to make better nutrition choices, go for a walk each day, take a yoga class, meditate, take on a new hobby or do anything that improves our health, attitude and emotional well being. Chasing Down Pemphigus & Pemphigoid is about proving that we can do more than what was thought possible.
The IPPF is a small non-profit foundation that provides important patient programming and support. While Chasing Down Pemphigus & Pemphigoid is first and foremost a year-round program designed to motivate and support patients in their efforts to live healthy and active lifestyles, it is also a critical fund raising campaign that assists the IPPF in continuing to provide all of the support we all greatly appreciate.
Check your mailbox and your email box in the coming months for Chasing Down Pemphigus & Pemphigoid articles on nutrition, stress reduction, exercise, support and patient stories (including YOUR story!). Can’t wait? Then email me at: email@example.com or Victoria at: Victoria@pemphigus.org to get going.