“My diagnosis date I remember not as the day my life became sealed with an expectation date, but as the day I truly started living. Since stepping down from my career 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.”
Just a few short weeks before my wedding I started noticing odd pains in my body; too busy to be bothered I shrugged off these symptoms 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.
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 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 retuned not a week later to review lab results confirming my diagnosis and 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, chemotherapy injections, and vasodilators to assist my Raynauds. Within the first two months after my diagnosis digital ulcerations began due to my severe vascular damage and I was hospitalized for the impending amputation of my thumb. Eventually the Raynauds become so severe, and the ulcers so common 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. As the year went on I received multiple new diagnosis; fibromyalgia, Sjogrens, RA, Gastroparesis, Esophageal, and Intestinal Dysmolitity, Malabsorption, Dysautonomia, Vasculitis, and many more. My body was shutting down due to an over production of collagen, a protein found in the connective tissue. It was as if someone had taken a IV of cement pouring it into my organs, blood vessels, and skin, solidifying my body with thick scar tissue. Not long after my digestive system began to fail, establishing severe GERD I 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. A few months later in December of 2014 my health took a turn for the worst during a lengthy 22 day hospital stay resulting in near fatal consequences after a reaction to an IVIG infusion. After re-integrating 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. Since that hospital stay my health seems to have spiraled out of medical control. I recently had a central line placed in my chest so I could undergo chemotherapy infusion every six weeks with hopes to slow the progression of my bodies quick deterioration.
Currently I am facing the failure of my respiratory muscles and am now reliant on supplemental oxygen. Mixed Connective Tissue Disease has taken the basic functions of life away from me, and my life has barely begun. My diagnosis date I remember not as the day my life became sealed with an expectation date, but as the day I truly started living. Since stepping down from my career 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.
This blog is dedicated to the generous Kickstarter by Courtney McKay.
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