There isn’t much that can be done to dramatically ease chronic pain. The medical community calls it “intractable” and “difficult”. The same can be said for many chronic disease symptoms. While we have treatments that show promise and medications that reduce severity, actual life-changing solutions are rare. It is hard not to stew in frustration … Continue reading Try it out. The long list
Lately, there has been a lot of buzz about treating pain with pain. From studies about the psychology of pain to stories about BDSM as a coping mechanism for living with disease, these articles are written by non sufferers and seem lacking in patient perspectives. The concept of treating pain with pain is almost instinctual. … Continue reading Not theirs to break
Living with partially or completely invisible illnesses can be an emotional rollercoaster. People are quick to assume everyone not in a chair or without a cane is able-bodied. On one hand, they don’t discriminate against you based on your unseen disability. On the other hand, they don’t give you empathy or the space that you … Continue reading You look great!
When you walk into a doctor’s office with acute symptoms, they want to know three things: What are the exact symptoms, what were you doing when the symptoms began, and how bad are the symptoms/pain (often using the ineffective 1-10 scale)? When you walk into a doctor’s office with chronic symptoms, they want to know … Continue reading Tricky symptom speak
My officially diagnosed conditions and their medical definitions are as follows: Ehlers-Danlos Syndrome (EDS) - Hypermobility type: “A group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues. Defects in connective tissues cause the signs and symptoms of these conditions, which range from mildly loose joints to life-threatening … Continue reading When they ask, “What’s wrong with you?”
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 … Continue reading This site is for us