Entitled rollers

Most of us who struggle with chronic medical conditions are quite empathetic. We know pain. We know invisibility. We know that everyone has their own struggles. There comes a point where kindness and understanding become traits which get taken advantage of in the larger world.  A new phenomenon called “trans ableism” had begun to simmer …

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Bringer of the medical zen

I have a family member who needs fairly intensive surgery. They are healthy besides the one impediment of a feisty heart that just wont stay out of afib. They have had procedures before. Ablations and cauterizations done through veins that worked for short amounts of time. At this point, the next surgery has to happen …

So many sorrys

We’ve been apologizing for as long as I can remember. Saying sorry to anyone who happens to see you on a hard day. Cowering to the people who consider our existence an inconvenience. Trying to soothe the awkwardness of those around us when we are flaring.  From the first time I was brought into the …

Lady like me

The complexities of being a biological female dealing with chronic pain and illness are innumerable. This isn’t to say that other gender identities don’t struggle with similar issues. Everyone’s struggle is real. There are no flat roads in any of our health journeys. These are just some of the particular areas where women face constant …

I’m just a girl – Diagnosing part 5 (Small Fiber Autonomic Neuropathy)

Numbness on the outside of my right leg. That was the starting point for my entire Small Fiber Autonomic Neuropathy journey. It’s a long one. Hold onto your hats and cozy up with a cup of tea. Here we go: I had recently come back to the United States after working overseas for a few …

Skimming pills

Most chronic illness and pain sufferers take medications. We require synthetic and natural interventions to live our lives. Certain meds make things significantly better, others keep us at maintenance levels, and some have the very heavy burden of keeping us alive. Because of this dependency, our relationships with medical providers and pharmacists are of the …

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 …

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 …

I’m just girl – Diagnosing part 3 (Postural Orthostatic Tachycardia Syndrome)

I just assumed that every person became light headed when they stood for an extended period of time. Standing up quickly or being overly active would always leave me with a spinning room and short light show. It was something I naturally compensated for through the years. I figured that everyone lived with these daily …

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 …