In November 2000, three months after moving from New York to New Zealand, I was diagnosed with Systemic Scleroderma and Raynaud’s Disease. I was 41 years old. Symptoms had begun a few months before with swelling in my hands, wrists, feet and ankles, and an unexplained fatigue. I was working full-time and on the weekends all I wanted to do was sleep. I would wake up in the morning, eat something, and fall back to sleep. I thought I was just tired and run down.
About a year before, I happened to meet an Irishman named Phillip who was living in New Zealand. Phil was visiting New York for a few days to attend his brother’s wedding. For the next 12 months we corresponded via telephone and actual hand-written letters! I visited him in New Zealand and absolutely fell in love with the place (I was a goner over Phil the moment we met). So I decided to move to New Zealand. How’s that for a transition!
Upon arriving in New Zealand, my symptoms grew worse- a stark contrast to my feelings about Phil and this breath-taking new country I now called home, where the beaches and forests were pristine and the air smelled like champagne. In addition to the swelling and fatigue, a strange tightness developed on the skin of my fingers, hands, neck and face – when I stretched my neck, the skin looked mottled underneath, like cereal left in a bowl of milk too long. I developed shortness of breath during my job search walking the hills of Auckland. My GP advised getting blood work done and the results revealed a positive ANA which indicated an auto-immune disease. She sent me to a specialist and, by that time (about six to eight weeks later), the skin had tightened all over my body – it felt like I was turning to stone. On two separate instances, I experienced double-vision and dizziness. The specialist diagnosed me with Systemic Scleroderma. Based on my current symptoms, she said the disease most likely had spread to my lungs, kidneys and thyroid. Phil was with me. We left the doctor’s office completely stunned. We attempted joking about how I had to get a rare disease and wasn’t I special? We had never heard of Scleroderma and couldn’t even pronounce it. When I practiced saying the word out loud it sent shivers down my spine.
The specialist referred me to a rheumatologist who was unavailable for another two months, so I started my own online research. I learned that Systemic Scleroderma was a rare and often deadly disease caused by a systemic fibrosis that could potentially strangle all the organs in the body. No known cause, no known cure. After researching online, I would share what I learned with Phil. We would cry together, then I would crawl into bed and fall sleep. Phil spent many, many worried and lonely hours while I slept.
My symptoms continued to come on like a freight train. Sometimes when I woke up in the morning, it felt like I’d been hit by a bus. My entire body ached, especially my joints. Sometimes my skin itched, sometimes it burned. People asked me if I went to tanning salons because my skin had turned brown.
Phil asked me to marry him on Christmas Eve, almost two months after my diagnosis. That proposal tells you a lot about the kind of man he is. We were married four months later. As a side note – my Antibiotic Protocol (AP) doctor at the time, the wonderful Dr. C of Howick, commented that he thought my relationship with Phil was a big part of my eventual recovery.
During my continued online research, I stumbled upon the Road Back Foundation’s website. At last, a glimmer of hope! I learned more about my illness and its treatment options from the people who contribute to this forum, than I have from all of my doctors combined. And I’ve had some great doctors! One of whom was Dr. C who was familiar with antibiotic treatment for rheumatic diseases and wrote me a prescription for Minocin. I started the treatment in January 2001.
My recovery was gradual but marked. The first thing that came back was little bursts of energy – oh how I missed having energy! Slowly my skin started loosening all over, even my face and neck and fingers. Joint pain lessened. More energy and flexibility returned. I could make a fist about a year later. I think it’s important that I add here how grateful I am that I never took steroids or the heavy-hitting immunosuppressant drugs like Methotrexate.
Today, I am pain free. I still have some tightening on my fingers and hands, my fingers are slightly contracted, but fully functional. I can make a fist and wear my wedding ring. I work full-time. A moderate form of Raynaud’s is still present, my fingers are often a bluish color and my fingertips are tender. That’s the worst of it! The warm and temperate climate of Southern California, where we live now, helps a lot, opposed to the wet and changeable climate of the beautiful New Zealand, where Phil and I began our marriage, and where we left behind a piece of our hearts.
Best of all, I am training for the New York City Marathon on Nov 4, almost 12 years to the date after my diagnosis! Yesterday, I completed a 24-mile training run. Guess I don’t have to tell you how my energy-level is!
To my friends at the Road Back, being able to train for this race is not only a personal victory for me, it’s a victory for all of us who got sick or who have loved ones or friends suffering from rheumatic diseases. It’s a victory for us because there is hope – always, always hope! I urge you, like running a marathon, to keep going and don’t stop! You continue to inspire me by your courage and tenacity, fighting these illnesses with all your mind and heart.