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…
After three years, two denials, and over 12,000 pages of paperwork, I was approved for Social Security Disability Insurance (SSDI) on Jan. 27, 2021. I never thought I’d see the process to completion. Given my previous denials, I was unsure how the trial phase would go.
At the start of the year, I received a call from my local pharmacy. The lovely employee told me she was giving me a courtesy call because my prescriptions were very expensive. I figured she was referring to the fact that I hadn’t met my deductible yet. But then she…
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…
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…
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…
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…
Picture in your mind the most painful thing that has ever happened to you. Now zero in on exactly what the pain felt like, looked like, or even smelled like. For me, there is no greater pain than having ulcerated wounds. I never really knew the feeling of true…
Note: This story was updated Jan. 25 to clarify that the $1.5 million dollar matching grant in honor of Bob Saget was provided by Scleroderma Research Foundation board members Luke Evnin and Deann Wright, not the foundation itself. The late comedian Bob Saget sparks many memories for…
When I was diagnosed with scleroderma at 19, it was dumped into my lap. The doctor simply looked at me and said, “Get your affairs in order and work as long as you can. Scleroderma has no cure and will ultimately take your life.” To say I was affected mentally…
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