Sometimes my pain is all consuming and other times it plays in the background like a bad song that won’t end. When a new issue pops up, I straddle two worlds. The first is my hour-to-hour existence. The second is my larger picture. It’s a balance between deciding what I need to do to make … Continue reading Flying with a broken wing
Tag: POTS
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 … Continue reading I’m just a girl – Diagnosing part 5 (Small Fiber Autonomic Neuropathy)
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 … Continue reading Skimming pills
Seeking sameness
A while ago, I met a man who wanted to date a female version of himself. His complaints about potential matches usually revolved around their way of speaking, dietary choices, hobbies, opinions, romantic needs, taste in media, etc. Basically, he was dissatisfied with each person because they had a personality of their own. He would … Continue reading Seeking sameness
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 … Continue reading I’m just girl – Diagnosing part 3 (Postural Orthostatic Tachycardia Syndrome)
Just a little movement
I didn’t realize that I was athletic until I got sick. Playing outside everyday and having sports integrated into my life was something I took for granted. I grew up in a rural place where there weren’t professional or academic sports teams. Everyone was just always outside doing activities. My dad grew up playing organized … Continue reading Just a little movement
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. … Continue reading Zebra looking for an umbrella
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 … Continue reading When they ask, “What’s wrong with you?”
Always Bent Sometimes Broken 