Scleroderma and the Ordinary Girl — Kim Tocker

Being chronically unwell wears me down. I find that it is hard work to get through so many complications on most days. I am not referring only to pain and fatigue, but also to myriad other challenges including anxiety, boredom, and disappointment.

I have recently become convinced that there is a specific event, kind of a “rite of passage,” that occurs for many chronically unwell people somewhere on their patient journey. I like to call it “The Great Transition.”  It is the point when you realize…

My guess is that most chronically unwell patients experience some level of anxiety on a regular basis. After all, our minds are constantly preoccupied with matters involving serious health issues, which can consequently lead to thoughts about our longevity. Anxiety can be exacerbated or caused…

My body and mind have not been doing so well lately. Too many issues have been going on all at once, and I’ve been feeling torn while trying to figure out which to deal with first. I do believe that being overstimulated and overwhelmed…

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…

I ended up with a really nasty urinary tract infection (UTI) a couple of weeks ago that I could only get rid of after two attempts of using two different antibiotics. Because I am an immunosuppressed patient, any type of infection puts me in…

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…

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…

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…

This week, I had a review appointment with my rheumatologist. She is my primary medical professional and manages the other doctors in my specialist team ― the commander-in-chief, if you will. It is an important meeting, generally once every year. We go…

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…

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…