Chronically Me – a Column by Amy Baker

Living with a chronic illness like scleroderma can be a constant challenge. Dealing with myriad doctor appointments, pharmacy runs, and symptoms is often time-consuming. Staying calm while managing this disease is easier said than done. One thing that’s helped me on this crazy journey is maintaining a positive attitude.

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…