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Scleroderma knows how to be a Debbie Downer. I can be enjoying a moment and BAM! Some debilitating pain or body malfunction pops up to ruin it. I can’t control when I’ll need to hit the pause button on our fun, but I can control how I approach the…

The holiday season is often a happy time. Giving gifts, spending time with family, and celebrating with food and conversation bring joy to many people. But for me, the holidays bring longing and envy. Christmas has always been significant for my family. While we’ve always held parties on Christmas Eve,…

One of my favorite smells is that of homemade soup simmering on the stove. It’s like a warm blanket for all of the senses. I used to make it when someone was sick, but after my scleroderma diagnosis, I found it helpful to make a huge batch and freeze…

There’s always a dark cloud following me around. It’s the reminder that scleroderma has my life clock ticking a little faster. Most of the healthy people I know don’t quite understand this internal struggle. I can’t even count how many times I’ve heard, “Nobody knows how long they have…

Many people have come and gone in the years I’ve been battling scleroderma. However, the friends and family members who stuck with me have taught me some valuable lessons about relationships, vulnerability, and strength. Before I was diagnosed with scleroderma in 2001, I was an extrovert, the life…

All the bedroom doors were closed and everyone was tucked in under their warm comforters. Except for me. I had taken on the 2013 holiday season like it was another full-time job. Without enough daylight hours to squeeze it all in, I was working the graveyard shift and bleeding myself…

It’s​ ​beginning​ ​to​ ​look​ ​an​ ​awful lot like the holidays!​ ​Everywhere​ ​I​ ​go​ ​I​ ​see ​festive decor and signs for holiday sales.​ ​I ​guess​ ​I​ ​shouldn’t​ ​be​ ​surprised​ ​to hear​ ​”Jingle​ ​Bells” ​and​ ​”White​ ​Christmas” ​on​ ​the​ ​radio​ ​in November.​ ​The​ ​hustle​ ​and​ ​bustle​ ​of​ ​the season​​ ​often bring​s​ ​long​…

The word “mortality” has pingponged around my brain from the moment I was introduced to the word “scleroderma.” I’ve dealt with the physical and emotional burdens of pain, depression, disabilities, and loss for over two decades. As a teenager, living with scleroderma made me angry. I bottled up all…

The sweet little boy approached his desk. As I looked up to greet him, a wall of cologne slammed into me like a wave from a tsunami. Immediately, I began coughing and gasping for air. That may sound like an overreaction, but it’s exactly what was happening. My lungs seem…

For some scleroderma patients, loss of sleep and fatigue are significant issues. Trying to manage a barrage of symptoms while exhausted is a tiring game of cat and mouse. Fortunately, until recently, I had only experienced fatigue in small doses. The occasional nap or sleepless night was all…