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Learning to Say No Can Save the Holiday Season

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…

How I Afford Holiday Gifts While Living on a Fixed Income

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​…

Scleroderma and Mortality: More Than Two Decades of Coexistence

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…

Lung Disease and Fragrances Don’t Mix in My Life

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…

How Anxiety Led to Fatigue After My Scary Cardiac Event

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…

Changing My Perspective Was the Toughest Pill to Swallow

The gentle sound of wind chimes filled the house. Then the short melody repeated itself. And again. Every time the tune played, I heard my daughter mumble, “Alexa, stop.” She was never an easy child to wake up. Lying in bed, I listened to her become increasingly angry at her…

How I (Barely) Survive the Annoying Scleroderma Itch

When I moved to Florida in 2002, I knew nothing about tropical climates, other than they’re great for beach vacations. While unpacking the moving truck, I sat down in the grass for a quick rest. That was my first mistake. Within seconds, my upper legs were covered in fire ants.

Can We Lead a Stress-free Life With Scleroderma?

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…

How My Scleroderma Diagnosis Taught Me Empathy and Compassion

She was fumbling through her coupon book, desperately trying to ignore the stares and loud sighs. As the line to the cash register grew, the moaning and groaning intensified. I gently said, “Take your time. You’re doing great.” The young woman locked eyes with me, and I could instantly feel…