Scleroderma and the Ordinary Girl

Is Having Fun with Scleroderma Possible?

Those with scleroderma will tell you that the disease is many things, but fun is certainly not one of them. Lately, I have been struggling with the effects of medication changes to address my secondary adrenal insufficiency. Weaning off hydrocortisone is part of…

Appreciating the Dark and Light Sides of My Life

Living with scleroderma means I need to make many important decisions to function, from treatment options to whether I’m well enough to get out of bed. Choices, choices, so many choices. It’s a miracle I get through so many on any given day. I…

My Social Dilemma: When Illness Hogs the Conversation

All those with chronic illness, and particularly those with invisible disabilities including my fellow scleroderma warriors, will know that to be able to attend important social occasions we have many considerations. Practical issues, such as parking, seating, and lift access, need to…

The Job Description of a Full-time Patient

One of the most devastating ways that having scleroderma has changed my life is that I have had to stop working. Pain and profound fatigue required me to close my successful counseling practice. It was an extremely difficult decision, and one I didn’t take…

Would the Real Lucifer Please Stand Up?

Living with scleroderma has been interesting lately, to say the least. Expletives, curses, profanities, call them what you will … my week has been full of them, right to the brim! I’ve been so full of nastiness that it has been overflowing from my mouth at any…

Refining the Art of Survival

Again on this New Year’s Eve, I found myself with the same thought as every other year: “Well, I survived another year living with scleroderma. I wonder how the next one will go.” I am certain that living with chronic…