Staying Alive With Scleroderma — Amy Gietzen

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…

“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…

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…

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,…

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…

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…

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…