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
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
I’ve written about the weight of sharing one’s chronic medical conditions for people in the public eye. I’ve also touched on explaining illness in all types of relationships. How does that look? What is your responsibility to share the issues and symptoms that you face? How much and how loud do you go? Who do you … Continue reading Is it a secret?
You know the pain. The mental and emotional annihilation. When your stomach drops and your heart tightens. It happens to everyone. Multiple times. Throughout your life, that feeling will waver and heighten over and over again. It will occur in friendships, romances, with peers, in the workplace, around strangers, and every other type of setting … Continue reading Emotional destruction
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?
A troll lives in my bedroom. Sometimes, most times, at night times, I feel him eating my feet. He’s a big ‘ole troll. With a mouth as wide as it is deep. Having stones for teeth, their jagged and cragged bottoms dispel any illusions that the smooth fronts might create. These teeth, they don’t just … Continue reading Night times
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)
Two of my least favorite things to hear from doctors and non-sufferers is, “Pain is all in the head” and “Mind over matter”. There are strong truths in both statements. Modern science has proven that pain is an interpretation by the brain. It does not originate where we feel it. Science has also shown that … Continue reading The day after
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
People with bent and broken bodies are often presumed to be weak. We are thought to have the same mental and emotional deficits that our external selves display. This becomes even more complicated with invisible disabilities. Looking healthy but having physical challenges means that people assume laziness and lies on top of the incorrect belief … Continue reading Crushed by assumptions