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
Tag: patient advocate
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)
Invisible proof
What you didn’t know, was that you would spend the rest of your life trying to convince people that you are broken. Even as you wrestle with the daily mindfuck that is surviving with invisible conditions, people need you to prove your pain and symptoms. Your word isn’t enough. Descriptions of any detail will never … Continue reading Invisible proof
So many sorrys
We’ve been apologizing for as long as I can remember. Saying sorry to anyone who happens to see you on a hard day. Cowering to the people who consider our existence an inconvenience. Trying to soothe the awkwardness of those around us when we are flaring. From the first time I was brought into the … Continue reading So many sorrys
Failed fluffy friend
I’m an animal person. I’ve been around pets and wild animals for most of my life. I know how to care for and interact with them. It’s all very natural for me. That being said, I haven’t had my own critter for a very long time. With a busy life, moving around, and travelling frequently, … Continue reading Failed fluffy friend
Always Bent Sometimes Broken 