My diagnosis process began in May of 2011; I was a 19 year old blushing bride to be busy with work, wedding planning, dress shopping, and saving for my upcoming nuptials to my high school sweetheart. We were both overcome with excitement and joy for our special day so when I started noticing odd pains in my body I ignored them, shrugging it off as wedding stress. As our beautiful wedding day came and went I noticed my symptoms didn’t fade as I had hoped but worsened.
My hands had begun to change, they would turn a violent purple and swell so much that I was unable to wear my brand new wedding ring on our honeymoon. My joints ached, I was losing hair, and the tips of my fingers looked as though they were dragged against sand paper. My husband and I decided it was time to see a doctor. I saw my primary care physician who immediately diagnosed me with severe Raynauds and referred me to a Rheumatologist with a somber mannerism. It was at that appointment that I knew something wasn’t right and prepared myself for a monumental change; I however, had no idea the depth my life would transform once I stepped into that Rheumatologists office.
October 21st 2011 - I remember not as the day my life became sealed with an expectation date, but as the day I truly started living. My eyes have been opened to so many wonderful things in this world since being diagnosed. Having your mortality be so evidently tangible sets much into perspective.
I am so often asked how I keep a sunny disposition while fighting an immensely devastating disease that has such a poor prognosis. I am fully aware that this disease does not intend to leave survivors and that at 25 years old I am probably not going to get as many years as I had hoped.
There are three simple things I have learned over the last three years that keep a smile on my face, a fighting spirit intact, and a gratefulness in every circumstance.
I am not that person any longer. I have changed, I have grown, and I have lost so much of that life. To compare the two would be unfair to myself. You emerge a different person on the midst of great tribulation. Things that used to bring me so much joy are unattainable to me in my present state, even little things like enjoying a meal or singing a song. I have to accept the new me, the Post-Sickness Chanel, as that is who I am now. I must focus on what makes me happy in the present, what I can accomplish today. Comparing will only bring misery and sorrow, but focusing on the present and what I can achieve will bring me joy and satisfaction.
I have blossomed into a women I truly have admiration for, a women that I never knew I could be. I have found an overwhelming strength that I had no idea even existed; without this devastating disease that strength would have never emerged. I have met and created relationships with some of the most courageous, beautiful, and strong women who walk this earth! They fight this disease with a grace unlike any. I am eternally great for for my Scleroderma Sisters. This trial has also helped me recognizing the beauty in humanity, friends, and family which without I would be lost.
3. Many people have told me if I just pray to be healed of my afflictions I would be disease free. Well, after years of praying for healing that never came I felt alone, unheard, and distraught. It took time for me to comprehend that the healing power of prayer may be different than most people assume. I had to accept that the absence of my disease might not be His will for me right now; that my illness may have a more divine purpose. I then understood that the healing power of prayer is not alone physical in every sense of the word, but emotional as well. I stopped praying for physical healing and began to pray for my life to follow the will of God but, that through this storm I could receive peace and strength. I can assure you that once I changed the way I prayed to my Heavenly Father my life become a much more tolerable place. I have never been let down, each time I have prayed for peace and comfort I have been heard and granted the serenity I needed to accomplish a task or particularly rough day. Once I aligned my will with His I felt as though we had never been closer. I stopped feeling alone, and started feeling like a true child of God. He has granted me so much strength through this illness; each time I prayed for peace I received it in abundance. The trials we face hold a purpose, simply wishing then away because we don't think we can carry the burden will only hinder us. 2 Cor. 12:9 "My grace is sufficient for thee; for my strength is made perfect in weakness. Most gladly therefor will I rather glory in my infirmities, that the power of Christ may rest upon me."
Since stepping down from my beloved career path as an educator due to health complications I have become a support group leader, patient advocate, public speaker, and illness blogger. These new ventures have opened incredible doors in my life and brought about tremendous changes in myself as an individual. I am now a stronger, more confident woman -- even in this broken body. I feel I can make a real change in the world through this new medium, bringing awareness and compassion to those battling similar illness. While I do not find much "happiness" in this trial, I find great joy in the blessings I see it reap. Life becomes so much simpler when you let go of what you intended your life to be and instead celebrate all that it is.