Tagged medical

Try it out. The long list

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 and depression when you deal with constant broken body issues. Every single moment reminds you why you are different and how you don’t function. Due to that incessant aggravation, I’ve compiled a list of things I use and do to make my life just a…

Not theirs to break

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. For instance, we tend to soothe a sore muscle with rubbing, smacking a bug bite that won’t stop itching, or using the distractive method of pinching your arm when your foot hurts. These techniques absolutely work, temporarily. They overload the nervous system and your brain…

You look great!

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 may need to handle your body.  When I take public transport, it has to be a high-energy day. I have been asked to standup so that someone mobile can take my seat. I have been jostled and rushed as everyone around me expects me to…

Tricky symptom speak

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 three things: How long have you been experiencing this symptom, what have other doctors said about this, and are you mentally sound? Through my many years navigating doctors and hospitals, I have found that using highly descriptive language is most effective way to express symptom…

When they ask, “What’s wrong with you?”

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 complications”. National Institutes of Health Postural Orthostatic Tachycardia Syndrome (POTS): “Postural orthostatic tachycardia syndrome is a condition that affects circulation. It involves the autonomic nervous system and sympathetic nervous system”. Cleveland Clinic Gastroparesis: “A disorder that slows or stops the movement of food from your stomach…

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…