Staying Alive With Scleroderma – a Column by Amy Gietzen

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…

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…

“I do not want my picture taken while I’m in my wheelchair, please!” These were the first words out of my mouth at my local Stepping Out to Cure Scleroderma walk in 2017. It may sound vain not to want anyone to snap a simple photo of me. But…

Chronic stress can lead to many physical and emotional issues, such as anxiety, high blood pressure, stomach ulcers, and heart attacks. For many people with autoimmune diseases, stress causes a ton of complications and exacerbates symptoms. This is also true for those of us with scleroderma, as stress…

Anyone living with scleroderma knows it is a difficult disease to manage. As patients, we are constantly flustered by a disease that seems to have no boundaries. Symptoms and treatment strategies vary from person to person, and scleroderma has no cure. Because of this, every scleroderma…

My experience with scleroderma has been a mashup of hot and cold emotions, physical highs and lows, and an eye-opening educational experience for both my support system and me. At times I’ve felt completely alone and scared about my future, and specifically how my health was going to look…

I was diagnosed with scleroderma in 2001. Finding out I was sick changed my whole life, and everyone’s lives around me. My parents, my siblings, my friends, my co-workers, my boss, and even strangers I’ve only met once were affected by my illness. At first, things stayed fairly “normal.”…

I would venture to guess that most people wake up every morning feeling refreshed after a good night’s sleep. They are probably bright-eyed and bushy-tailed, reenergized, and ready to take on the new day. Unfortunately for me, waking up every morning seems more like the movie “Groundhog Day”…

I sometimes find myself envious of other people. I’ll look at a person walking down the street and think, “What if my life path was different?” It’s not uncommon for a person with scleroderma to try to rationalize why their life is the way it is, and why…

I remember as a child having no fear. I would throw myself headfirst into any and everything, not caring whether it was safe or the right thing to do. I just let go of all my inhibitions and made that leap. I wish I could say my fearlessness stayed with…