The phone rang on a Friday night. I answered it thinking the call probably was from another annoying solicitor. Instead, it was the voice of the person who would introduce me to my disorder.
The nurse told that me my tests had come in, and I had scleroderma.
I wasn’t sure what to do with the news. I could hear my inner voice demanding answers and asking, “What in the world is scleroderma?” Against my better judgment, I turned to the internet.
Within minutes, I found terrible statistics and read about the possibility of debilitating ailments. All of the information associated with this autoimmune disorder was horrifying. I learned of hands being crippled, lungs becoming scarred, and the many ways this monster can cause death. I read about the “lucky” ones who lived for 10 years.
Doctor, tell me I’m OK
I vividly recall sitting on the crinkly white paper in the doctor’s office. Although the walls were painted a cheerful yellow, the room felt lonely and cold. Why don’t they have motivational posters in doctor’s offices, I wondered. Looking at the bare walls and sterile medical supplies offered no comfort.
I clung to the idea that there might be a cure. But when the doctor entered the room, he crushed that hope. However, he also explained the ways that we would fight to stay one step ahead of the disease.
If you have ever been to a train station during rush hour, you’ll have an idea of the pace of the thoughts going through my head. They were like a crowd of people fighting to be heard. Some voices demanded a second opinion. Others cried out in fear. My thoughts were so chaotic I was unable to make sense of anything.
“Are you OK?” my doctor asked. I realized he had been talking to me, but I was paralyzed with fear. To keep from screaming, all I could do was grip the paper underneath me like I was holding the handlebars of a motorcycle.
I should have told him I was freaking out because the internet told me I was going to die! I believed that this was the end, and there was nothing I could do about it. I’m not sure why I responded the way I did. I told him I was OK, but it was a lie. I was far from being all right.
As I spun out of control, I asked him how long I had to live. He couldn’t give me an answer. This would be my first lesson about scleroderma. It is an individual disease and no two people go through it the same way. The answer to my question depended on how my body reacted. Even less comforting, the only thing we could do was to repeat the tests in three months to see if I had a severe form of the disease.
Waiting is the hardest part
The three-month wait was challenging. My husband and I would pass each other in the hallway and our eyes would lock. Fear and sadness nagged at us. It was like living life on hold.
I remember one night cuddling my cocker spaniel while watching my kids sing and dance to princess songs. Snug on the couch, I was enjoying the moment when suddenly it hit me: I might not get to see them dance at their weddings, and I might not even outlive my dog.
My heart tightened and the hairs on my arms stood up. Suddenly, the world felt dark. I had to leave the room as tears poured from my eyes.
Life after diagnosis
At the time, I wish someone would have told me that research and medicine would advance significantly in the next 10 years. Today, many of us continue to live full lives despite our diagnoses. For those recently diagnosed, it’s important to find sources of information that focus on living with the disease.
Once we make it through the initial testing storm, the clouds part and the world brightens again. I no longer see my life as a dead end. In fact, I make more plans now than I did before my diagnosis. Not only will I be at my daughters’ weddings, but I also will dance my heart out in celebration when those days come!
Scleroderma is not the end of my story — not by a long shot.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.
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