Chronically Me – a Column by Amy Baker

Dating in general is hard. You swipe right, swipe left, move up and down, or something like that. Maybe you even do the hokeypokey. And online dating? No way, no how. Dating with a chronic illness like scleroderma is exponentially more challenging and terrifying. It’s like going to a carnival…

“Hey, Mom, can you play with me?” my son, with his boundless energy, asks me enthusiastically, his eyes brimming with excitement. My heart is whole, and for today, I am still his favorite play buddy. Anyone with a chronic, debilitating illness will understand the following few words. “Sure, honey,…

I will never forget the day I applied for Social Security Disability Insurance. I remember sitting at my computer, willing myself to fill out the lengthy application. Growing up, it was instilled in me to work hard for what I wanted and never accept a handout.

I have scleroderma. For the most part, I am pretty private about my scleroderma diagnosis — except for the fact that I write a column. Go figure. However, the thought of discussing my diagnosis face to face with others causes me anxiety. I know it sounds strange,…

Editor’s note: As the title indicates, this column discusses suicide. Helpful resources can be found at the end of the column if you need support. In June 2011, my father died by suicide. The day I learned about his death was my…

Scleroderma, lupus, rheumatoid arthritis, Sjögren’s syndrome — all of these are autoimmune diseases. And they’re invading my every cell. I’m displeased by how these diseases have made themselves at home…

“What do you do for a living?” Ahh, one of the most common questions asked upon meeting new people. I dread this moment. Do I tell them what I used to do? I was a marketing director, recruiter, and human resource machine. All of those titles sound decent. So, which…

I wonder if the “old Amy” thinks of me as much as I think of her. I miss her terribly. She seemed to slip away from me without me even saying goodbye. My heart aches for who she was and who I am now becoming. I didn’t ask for any…

How do you measure success and self-worth? It may be a simple question for some, but for those who suffer from chronic autoimmune diseases such as scleroderma, the answer often becomes quite complex. Like many other adults, I used to measure my success and self-worth by my…

“Get out of bed … now!” Are you kidding me? Getting out of bed would take forever. “Time waits for no one. Embrace the suck, Amy.” Stop yelling at me! I’m getting there. (And by getting there, I mean lying there not moving, with hot, silent tears rolling down my…