Chronically Me — Amy Baker

A person meets their person. If they are lucky, they fall in love. They may or may not get married. Either way, they lovingly pledge for better or for worse, in sickness and in health. Too often, the vows we speak to one another are taken for granted. We believe…

One of the first noticeable symptoms of my scleroderma was ice-cold fingers and toes. While they would morph into a lovely variety of colors, it hurt when they did their magic, color-changing routine. I admit I felt rather patriotic when they turned red, white, and blue (and sometimes…

The last few months have been a whirlwind for me due to all of the life-changing events I’ve been experiencing. Autoimmune disorders and stress do not mix well, and it took me a while to recover from moving, starting a new career, and experiencing a scleroderma flare-up. I…

Living with scleroderma fatigue is unquestionably a roller coaster ride. One day I’ll be cleaning the house and taking care of my responsibilities, and the next, I’ll be under a blanket, recovering from taking care of those same responsibilities. The energy I had the previous day will be…

Chronic pain is unfortunately a hallmark symptom of scleroderma. Before my autoimmune journey started, I had chronic pain in my shoulder from injuries sustained in a car accident years earlier. I thought I had a “shoulder up” on living with pain. Ba dum tss. However, I had been unaware of…

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.

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…

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…

Because no one else in my family had scleroderma, I’ve often wondered where I procured this delightful autoimmune disease. Scleroderma is the gift that keeps on giving, something I wouldn’t wish on anyone. I wonder if there’s a way I can return it, maybe for an in-store credit or a…

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,…