Tagged healthcare

Response required yesterday to a letter received today

We try, desperately, to meet and match deadlines set by the world. But, from work to leisure, time works differently for the broken. Our bodies’ needs outweigh our desires to keep up with a “normal” pace of life. On the truly terrible days, I can’t function. I can’t leave my bed. Every micro-movement, even just laying still, causes agony that doubles down on the internal pain radiating from my nerves, muscles, and joints. Hell-level migraine days see me curled into a ball crying, vomiting, and losing my will to live. There are moments where my stomach refuses even water and…

Zebra looking for an umbrella

Having more than one disease complicates everything. Most of those diseases being rare and understudied turn those complications into catastrophes. Doctors don’t know what to do with you and they truly don’t care to try. When you are already suffering from a mystery, the last thing you want is for your doctor to quit helping. Sometimes that dismissal seals a sufferers decision to give up. It reinforces their anxieties and amplifies their pain. Along with hope, their motivation for life disappears.  I asked for help everywhere. At first, I didn’t know what was happening to my body. My early symptoms…

This site is for us

Like many people with chronic conditions, I suffer from a plethora of symptoms and named diagnoses. My journey to chronic disease was not an incremental experience. Instead, I seemed to plummet from a life of general adventure and good health to pain and suffering in 24 hours. Years after that peculiar day, I am finally able to look back on my lifetime health and see small signs and symptoms of what unraveled. Some things still don’t add up. Other things are out-of-the-blue medical problems that baffle everyone. Overall, only time and a careful rewinding of my journey has given me…