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
Tag: patient advocate
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
Crushed by assumptions
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
Virus light
I get sick a lot. Most of the time it is a simple cold. Occasionally, my body turns sniffles or a cough into bronchitis, strep throat, pneumonia, or some weird iteration of the flu. My immune system is compromised for an unknown reason. Like many people with chronic diseases, my body is angry and permanently … Continue reading Virus light
Trickiness of time
Someone recently asked me how long ago my medical issues started. With a blank stare and stuttered excuse, I realized that I couldn’t answer that question accurately. I began to wonder if I was lacking as a proactive patient. Here's the thing, I’m not sure that I want to have a perfect schedule and exact … Continue reading Trickiness of time
Coming around
It seems fake. I mean, whose legs aren’t restless? Is there anyone who can sit or lay comfortably in one position without needing to shift? Everyone needs to move from time to time. But, it turns out that Restless Leg Syndrome is a just a terrible name for a real disorder. I think it falls … Continue reading Coming around
Opioids and Judgy McJudgerson
Take a deep breath. This is going to be one of the most polarizing issues that we discuss here. It’s also going to be a long post. However, no matter how long the column is it won’t be long or detailed enough. Pain and pain management is a very complicated discussion. It is intensely personal … Continue reading Opioids and Judgy McJudgerson
