My story began in 2010. I was misdiagnosed two times because Pulmonary Fibrosis is not a common disease. Doctors are just learning about this disease. The journey has been a challenge. To find the right caring, compassionate doctors and treatment have taken me on quite the journey. I have found the doctors but now it is about me.
I realized when I wrote the title of my story how I view this disease. It is a monster living inside me. I am frightened of it—extremely frightened of it. Each time I see my pulmonologist, I am getting worse. I am trying to get on the list to get a double lung transplant. They have to do many tests, some of which I don’t think I will pass.
I am extremely sensitive to drugs which is not good either, and all of this plays on my fears. I tried to draw a picture of the disease. I drew a pair of lungs with lines of scarring on the lungs and inside the body. As I drew, my depiction seemed to take me over, and the lines got more and more intense.
I am re-reading your books and trying to get a better mind set in how to live with the disease and hopefully prepare for a double lung transplant and life after.
Thanks for allowing me to share.
Thank you for sharing your story—and especially for your honesty about having real fears. Being honest with yourself and honest with others instead of hiding your real feelings is vital to releasing that stress so that your immune system can get stronger. Your description of making a drawing of how you think of this disease within your body was such an important exercise. It reveals something you can use to eliminate even more stress—think of other relationships in your life that you could describe in the same way—scarring you with negativity when you need to strengthen your positive plans for dealing with your disease. Eliminate as many of those negative people or involvements as you can. Practice meditation or visualization to reduce stress—make it a daily practice. Please keep us informed as you continue on the healing path.