I wouldn’t wish _______ on my worst enemy. That common, certainly overused, phrase fits how I feel about my health challenges. Unstoppable pain, ever-changing symptoms, dramatic physical changes, life altering daily struggles, etc. My broken body is my burden. My unfathomable new existence. Even after nearly a decade of trying to find a normal, I … Continue reading Vogue vomit
Tag: patient advocate
Spruce ter-let
My frustrations with ablism around most outdoor adventures are numerous. One of the most glaring shortcomings we face on the daily is a lack of access to bathroom facilities. This complaint runs across the board. For all genders, all types of disability, all ages, etc. Every person needs and deserves access to clean functional toilets. … Continue reading Spruce ter-let
Entitled rollers
Most of us who struggle with chronic medical conditions are quite empathetic. We know pain. We know invisibility. We know that everyone has their own struggles. There comes a point where kindness and understanding become traits which get taken advantage of in the larger world. A new phenomenon called “trans ableism” had begun to simmer … Continue reading Entitled rollers
Vampire hike
We headed out on a hike around noon. While I typically try to avoid the hottest time of the day for physical exertion, it was a day that skewed cooler. Wearing shorts, a shirt and a hat, I lathered on sunscreen and sprayed a thick cloud of skin-friendly yet reliable bug repellent. There were a … Continue reading Vampire hike
It’s still raining
I don’t know how long it takes for something to be obvious. How many individual accounts of the same story? How frequently do we need to see the same symptoms? When do they, the people and institutions in power, connect the dots or follow the strings? More and more often, journalists and celebrities are publicly … Continue reading It’s still raining
Happy-ish feet
Feet. The often ultra-divisive body parts that allow us to stand. I never understood the love or hate for feet. They were considered simply functional in my culture. Heavily worn, toughened, and critical to mobility… feet were used and not thought of unless they had a problem. With age and travel, I learned that many … Continue reading Happy-ish feet
Don’t get left behind
Every few weeks, an article will pop up declaring scientific breakthroughs in the medical community. They will herald new and promising treatments for the afflicted. There will be vague explanations of technology driven research and claims that THIS! THIS ONE! is the beginning of the end of suffering for thousands, millions of people around the … Continue reading Don’t get left behind
Can I eat this?
No fiber. No fat. My diet is pretty much the antithesis of commonly practiced healthy guidelines. Gastroparesis is an up and down condition. It flares and wanes depending on many things, some of which you have no control over. Pain, nausea, and vomiting are often relentless. Since gastroparesis is basically a paralyzed stomach, learning major … Continue reading Can I eat this?
Bringer of the medical zen
I have a family member who needs fairly intensive surgery. They are healthy besides the one impediment of a feisty heart that just wont stay out of afib. They have had procedures before. Ablations and cauterizations done through veins that worked for short amounts of time. At this point, the next surgery has to happen … Continue reading Bringer of the medical zen
I’m just a girl – Diagnosing part 6 (Chronic Idiopathic Uticaria)
The term “hives” immediately brings to mind a body full of welts. I was always under the impression that they were caused by two things, anxiety or skin allergies. Growing up, I never suffered from hives or frequent rashes. My main allergy was/is dust. It causes my nose to run, eyes to itch, and a … Continue reading I’m just a girl – Diagnosing part 6 (Chronic Idiopathic Uticaria)
Always Bent Sometimes Broken 