Advocates on Steps of Congress 2013
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Tubey in Her Tummy

My name is Chanel White and I was diagnosed with Systemic Sclerosis at age 20, I am now 23 years old.

chanel white 1.jpgMy Scleroderma story starts 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.

I entered equipped for the worse, but still was unprepared, everything happened in a vague blur when I look back on that day. He took one look at my tightening hands, painful body, purple fingers, and exhaustion and told me I had Scleroderma. 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 returned less than a week later to receive surprising results; not only did I have an extremely quick onset of Scleroderma, but I also had blood work positive for Systemic Lupus, and Polymyosists. I was giving a full diagnosis of Mixed Connective Tissue Disease with the primary issue being Systemic Sclerosis.

chanel white 2.jpgI began drastic immunosuppressant treatments, steroids, and vasodilators to assist my Raynauds. Within the first two months after my diagnosis the digital ulcerations began and I was hospitalized for the impending amputation of my thumb. I ended up staying in the hospital for four days as I endure a Flolan Infusion in an attempt to save my finger. Little did I know I would return in that same situation many, many times for the multiple digital ulcers I would revive the first year and a half of my diagnosis. Eventually the Raynauds become so severe, and the ulcers so common that my physician refer me to an orthopedic surgeon for a Digital Sympathectomy. 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, hospitalized multiple times a year, at the doctors office at least four times a week, and now adding surgeries to my list. I had the sympathetic nerves taken out of both of my hands resulting in a year free from painful ulcerations. The surgery did not solve my problem for long however, my hands quickly found their way back to their horrible shade of purple and the unbearable ulcerations. In the second year of my diagnosis I believed things could not get any worse, with the onset of my tightening lower legs, shrinking smile, ever tightening fingers, and constant pain. I was wrong. 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 and tests to assess my esophageal function and found that my Systemic Sclerosis had began to shut down my digestive system. Not long after this discovery I established severe GERD and was unable to keep any food in my stomach without violently vomiting stomach acid. I was sleeping sitting up, lost 25lbs in a matter of months, and was told I was going to starve to death. My doctor decided it was time to place a feeding tube, so at the young age of 22 I had a surgically placed tube implanted into my stomach with the prospect of never eating food, or enjoying a meal with my family again.

chanel white 3.jpgSystemic Sclerosis had taken the basic functions of life away from me, and my life had barely begun. I have tried to live my life with my head held high, tried to not let this disease rule my happiness as it so rules my body. Through the last three years of my trial I completed my teaching certificate and became a Montessori Early Education Teacher, doing most of the schoolwork while sick in bed. I am currently teaching part time while I receive rigorous treatments for my disease at the University of Washington Hospital. I have not let my disease keep me from the things I love, my husband, my job, and my family. I know this disease will mean my life will never be easy, and that I will face much adversity and pain, but it has also made me a stronger person, someone who can help raise awareness and inspire hope in others.

I head off to work everyday with my pump and formula in my backpack and my children’s books about tube feeding to help my students comprehend my situation. I get the privilege of culturing these young children in medical disabilities and get to instill in them at a young age that it’s ok to be a little different. My students are always quick to remind me at lunchtime that “Mrs. Chanel doesn’t eat with her mouth! She has a Tubey in her tummy!” They can see my hands change colors, and notice that I may not be able to open their water bottles, or help them button their coats, but in their eyes Mrs. Chanel is perfect just the way she is…Feeding tube, purple hands and all!

 

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