The Tube Fed Wife– Blogger Tells All on Life with Multiple Rare Diseases

June 2, 2015

My diagnosis process began at 19 years old. Planning for my wedding day I was overcome with excitement, so when I started noticing odd pains in my body I ignored them. 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 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. I finally saw my primary care physician who immediately diagnosed me with severe Raynauds and referred me to a Rheumatologist.

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 worst, but still was unprepared for the news I received, 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 retuned not 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. I 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. Little did I know I would return in that same situation many, many times for the multiple digital ulcers I would revive.

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 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. In the second/third year of my diagnosis I believed things could not get any worse, with the onset of my thickening skin, constant pain, multiple new diagnosis (Fibromyalgia, Vasculitis, Dysautonimia), and new chemotherapy infusions — 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 and found that the Systemic Sclerosis had begun to shut down my digestive system, paralyzing my organs with thick fibrosis. 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 30lbs in a matter of weeks, 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 was told I would likely never eat again. Shortly after I had a Chest Port placed for more frequent infusion therapies, however in December 2014 my health took a turn for the worst during a lengthy 22 day hospital stay. After re-intergrating back to my normal life I found myself unable to preform working functions adequately and had to step down from my career as a Montessori School Teacher. Currently I am facing the failure of my respiratory muscles and I am now reliant on supplemental oxygen during sleep, or heavy physical activity — Mixed Connective Tissue Disease has taken the basic functions of life away from me, and my life has barely begun.
I remember my diagnosis not as the day my life became sealed with an expectation date, but as the day I truly started living. I have found an inner strength and passion within myself I never knew existed. Disease truly does change a persons perspective. I have since become a patient advocate, illness blogger, support group leader, and public speaker. While I know I will not get as many years as I had hoped for… I have never enjoyed my life more.

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