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“Wow, you were just discharged from the hospital? You look healthy to me.” I can’t remember a time when words have hurt me more. According to the U.S. Centers for Disease Control and Prevention, more than 53% of Americans are living with a chronic medical condition. As startling as…

Humans have known war almost since humans existed. Thousands of civilizations and religious evangelists have started wars to conquer their opponents and live to tell the tales. The difficult journey of living with scleroderma resembles preparing for and engaging in war. We build our bodies and minds to face…

All I wanted was to grab a plate of leftovers. Instead, I got an emotional beat-down from a bowl of freshly cut pineapples. The sight of pineapples always zaps me right back to intensive care, where I was recovering after having six strokes. I couldn’t have visitors due to the…

As 2022 comes to an end, I’m reflecting on the year and trying to look forward to all 2023 might offer. Many adults are probably excited to ring in the new year in style by going out on the town or enjoying a few drinks with friends. Sometimes I envy…

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…