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…
The majority of our immune system — almost 70 percent — is in our digestive tract. Every morsel of food ingested filters right into our digestive tract. While I think it is true that everything in moderation is OK, someone with an autoimmune disease should pay close attention…
Today, Feb. 28, is Rare Disease Day. This year’s theme is “Research.” https://sclerodermanews.com/wp-content/uploads/2018/01/NW-rdd-2017-video-research.mp4 Living with a rare disease is daunting in every way imaginable. Having been a diffuse scleroderma, rare disease patient for 21 years, I believe research provides immense hope. Hope that the desperately needed…
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…
Today, Feb. 14, is Valentine’s Day. Scleroderma can affect the heart in various ways. Fibrosis of the heart can be life-threatening, and may contribute to pulmonary arterial hypertension. Upon initial examination and diagnosis, the heart should be assessed for any disease activity. Electrocardiogram…
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…
“You practicing to become a ballerina?” my mom asks me as she lathers up soap on a sponge to wash my back. I’ve gotten pretty good at showering with one foot sticking out, as a result of an open ulcer on my heel that has to stay dry.
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…
Living with a rare disease that has an unknown cause and no cure is daunting in every way imaginable. For me, managing my scleroderma symptoms, combined with fatigue, mobility challenges, my nutrition and food ingredients is a…
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