Living with a chronic illness like scleroderma can be a constant challenge. Dealing with myriad doctor appointments, pharmacy runs, and symptoms is often time-consuming. Staying calm while managing this disease is easier said than done. One thing that’s helped me on this crazy journey is maintaining a positive attitude.
A chronic, life-threatening health problem can disrupt all aspects of your life, especially when it develops unexpectedly. When I was diagnosed with scleroderma at age 19, I was overwhelmed by difficult emotions, from fear and worry to profound sadness, despair, and grief. These feelings rushed over me like cold…
After I was diagnosed with scleroderma in 2001, I found myself having some strange thoughts, such as, “What’s wrong with me? My body hates me. I hate my body. What did I do to deserve this? Why can’t I just be normal again?” While many of the feelings I…
Life with scleroderma can be a struggle. Sometimes, when the pain seeps into my bones and fatigue keeps me in bed for hours, the battle seems insurmountable. But even on those difficult days, I’ve learned to fake it until I make it. I can’t tell you how many times…
I’m a lot of work, even on a good day. Living with scleroderma requires me to spend a lot of time and energy on maintaining my health. Because of this, I often wonder if a potential life partner would think I am worth the emotional and physical effort a…
I sat on the shower floor in complete exhaustion, a scrubbing brush in one hand and a natural disinfectant in the other. Physically, I was at my breaking point. But the shower was only half-done. It’s tough throwing in the towel, but my body sometimes just doesn’t cooperate long enough…
“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…
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