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Taking Life One Breath at a Time

I can’t breathe, literally! At times I feel like I’m drowning in my own body. Living with scleroderma can be complicated — not because of the disease itself, which has a mind of its own, but mostly due to symptoms and side effects acquired along the journey. Early on in…

Scleroderma Patients Deserve to Be Heard

When people learn that I have scleroderma, they tend to react in one of two ways. Some offer pity and sorrow and treat me as though my life were over. They’ll look at me like I’m a lost kitten or mistakenly assume I’m now dependent on other people’s mercy…

My Love of Food Has Caused Me Heartache — and Heartburn

Eating is a sacred ritual in my life. I live for the aroma of freshly baked rosemary bread or the first bite of homemade chocolate chip cookies. Between the salty dough and the semisweet chocolate, the flavors are almost indescribable. I am also passionate about trying new foods. But eating…

Low Self-esteem Is Another Challenge I’ve Had to Face

I like to refer to myself as a candy-coated treat: a hard shell on the outside with a soft, gooey middle. Since being diagnosed with scleroderma, I’ve often had to toughen up my hard shell to take on the difficult changes — like hand and facial deformities — this disease…

I Wish ‘Feeling Better’ Was Permanent

Cradled in my husband’s arms is one of my favorite places to be. His 6-foot-2 frame engulfs me in a blanket of warmth and safety. When I’m in pain, his cuddles calm me like a weighted blanket. On rare occasions, I have the opposite of a flare-up: I’m…

My Top 7 Scleroderma Self-care Items

When dealing with scleroderma, some things are necessities. Following are the seven must-have items that best help me to manage symptoms and practice the best self-care possible. 1. Heating pad I need my heating pad. I keep one on the couch. Yes, old lady business right here, but the body…

Learning to Catch My Breath With Interstitial Lung Disease

I stare at the two flights of stairs in front of me, wishing there was a magic elevator. With no other choice, I start climbing, slowly. Suddenly, my breathing is shallow. I inhale and exhale rapidly, my lungs desperate for air. Grasping the handrail, I steady myself and finally reach…