My Story

My diagnosis process began in May of 2011; I was a young bride to be busy with work and wedding planning. I was overcome with excitement and joy, so when I started noticing odd pains in my body I ignored them, shrugging it off as 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. My joints ached, I was losing hair, and the tips of my fingers looked as though they were dragged against sand paper. When the tip of my thumb became an oozing, un-healing sore, we 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 was very, very wrong 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. 

I entered equipped for the worse, but still was unprepared for the news I received, everything happened in a vague blur when I look back on that day. He looked over my tightening hands, erupting nail-fold capillaries, purple fingers, and told me I had Systemic Scleroderma. The prognosis was not good. I left the office not knowing what it truly meant but had a handful of prescription drugs to acquire, pamphlets to read, and a new way of life to start. I was to return in the next few days for the results of my blood work to solidify my diagnosis. I retuned not a week later to receive surprising results. Not only did I have an extremely quick onset of Systemic Scleroderma, my blood work also reflected positive results for Systemic Lupus, and Polymyosists - with a very high tittered U1-RNP. I was giving a full diagnosis of Mixed Connective Tissue Disease, with the primary issue being Systemic Sclerosis (Scleroderma). 

We began drastic immunosuppressant treatments. Within the first two months after my diagnosis digital ulcerations became so severe I was hospitalized for the impending amputation of my thumb and pointer finger. Luckily, a drug called Flolan saved my dying digits. Little did I know, I would return in that same situation many, many times for the multiple digital ulcerations. A year and a half riddled with pain, uncertainty, emotional instability, the loss of our first home, mounds of medical debt, and more doctors appointments and procedures than I could count. Eventually the Raynauds become so severe, and the ulcers so diffused that my physician refer me to an orthopedic surgeon for a Digital Sympathectomy; a surgery to remove the nervous system responsible for the blood vessel dilation in your palms. 

I once was a healthy vibrant young woman, and now I was someone I didn’t even recognize. I was on more medication a day than I could count, enduring weekly chemotherapy injections, hospitalized multiple times a year, and spent the majority of my times in and out of doctors offices. 

Later that year I noticed my food was becoming hard to swallow - it was like I was trying to eat a whole jar of peanut butter with no liquid to wash it down. I went through many procedures to assess my esophageal function and found that MCTD had caused severe smooth muscle tissue damage throughout my digestive tract, paralyzing many of my organs. I established crippling GERD, Esophageal paralysis, Gastroparesis, severe malabsorption, small bowel and colonic dysmotility. I couldn't eat, I couldn't drink, and was in a state of constant pain and nausea. I lost 30lbs in a matter of weeks and was told I was going to starve to death if we didn't take drastic measures. My doctor decided it was time to place a feeding tube.
In December of 2014 my health took a turn for the worst during a lengthy hospitalization for Guillain-Barre, which resulted in near fatal consequences. After weeks of Acute Rehabilitation to re-learn how to walk, talk, and regain my motor skills I found integrating back to my normal life harder than expected. I was unable to preform working functions adequately and had to step down from my career as a Montessori School Teacher. The year that followed held the deterioration of my lungs and respiratory muscles. My lung function dropped dramatically, I was desaturating, and my diaphragm functionality plummeted to almost non-existent - leading to the use of supplemental oxygen. My physician started me on drastic chemotherapy infusions which did improve my lung quality enough to leave my tanks for a period of time.

Everything changed when my specialist referred me to a Clinical Trail for severe, treatment resistant autoimmune patients in 2016. I was to undergo an Autologus Hematepoietic Stem Cell Transplant. This process is also known as a Bone Marrow Transplant. After months of evaluations at different hospitals around the country, I was found to be a candidate in Chicago. My transplant process completed in January of 2017. It was one of the absolute worst experience of my life, but it is incredible to see the miracles it has wielded! No I am not cured, but I am in a much less dire situation than I was, and I hope to continue to improve! 

Two thousand and eleven, I remember not as the year my life became sealed with an expectation date, but as the year 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 set so much into perspective. I am fully aware that this disease does not intend to leave survivors and that 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 many years that keep a smile on my face, a fighting spirit intact, and a gratefulness in every circumstance.
  • I do not compare myself today to the old me, the Pre-Sickness Chanel. 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. 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. Comparing will only bring misery and sorrow, but focusing on the present and what I can achieve will bring me joy and satisfaction. 
  • I like to focus on what this trial has given me and not what it has stolen from me. 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 people who walk this earth! This trial has helped me recognizing the beauty in humanity, friends, and family which without I would be lost. 
  • The Lord did not promise all things would be in our favor, He promised all things would work together for our good. 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 needed to start praying for strength to endure the trials of mortality - for peace through my struggle. I needed to stop expecting and start accepting! I then understood that the healing power of prayer is not alone physical in every sense of the word, but emotional as well. 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. 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."

Battling these conditions has 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 illnesses. 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. 

Chanel White