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)
Tag: patient advocate
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
Skimming pills
Most chronic illness and pain sufferers take medications. We require synthetic and natural interventions to live our lives. Certain meds make things significantly better, others keep us at maintenance levels, and some have the very heavy burden of keeping us alive. Because of this dependency, our relationships with medical providers and pharmacists are of the … Continue reading Skimming pills
Welcome to the bumpiest road
I’m not one of the lifers. My chronic conditions took over less than a decade ago. While I had experienced some symptoms earlier, my overwhelming and life-altering issues only developed in my late twenties. Of course, any amount of time with severe pain and symptoms feels like an eternity. Looking back to days of physical … Continue reading Welcome to the bumpiest road
It’s only your life in their hands
I get one of my medications from another country. After years of trying every possible combination of drugs to ease my stomach symptoms and increase my appetite, my gastroenterologist told me about one of the most effective medications for my condition. However, it was/is banned in the United States. Desperate and willing to incur the … Continue reading It’s only your life in their hands
What’s the alternative?
I’ve lost count of the number of prescription medications that I have tried. At last count, the number was creeping into the upper 50s. Yep. From the time of my first, body-destroying migraine until today, I have tried over fifty separate pharmaceutical drugs. I’m not counting the intravenous or in-hospital abortive meds. Just the pills, … Continue reading What’s the alternative?
I’m just a girl – Diagnosing part 4 (Ehlers-Danlos Syndrome)
I’ve always been bendy. It’s a talent that helped me stand out in dance classes and yoga. As a kid, it also made for a great party trick and an easy way to impress my friends. Can anyone fit in that box? Me! Who can reach the toy behind the sofa? Me! Can anyone match … Continue reading I’m just a girl – Diagnosing part 4 (Ehlers-Danlos Syndrome)
Care in the upside down
When the world seems to be in utter chaos, how do we get the care that we need? Well, our planet has never been perfect and our lives have never been “normal”. We have always been outside the model of average and strapped in for a turbulent ride. Now that lights shinning on general themes … Continue reading Care in the upside down
