Capricious Lestrange is a patient advocate with many years experience researching and treating many rare conditions with naturopathic medicine in conjunction with some Western medicine practices. Capricious is not a licensed or trained medical practitioner, though she’s been writing and researching on these topics long enough that she might be deserving of an honorary degree, like so many who have had to discover for themselves what was causing their illness. She searched 19 years for answers and though doctors couldn’t tell her why she suffered so terribly, she found her correct primary diagnosis (and a few comorbid ones) through her own research. While it isn’t unheard of to discover one’s own rare genetic disorder, most patients don’t become their own doctors, finding effective treatments a full year before seeing their first qualified specialists, but this is what Capricious did. She relied on holistic medications and her GP to prescribe her what he would or refer her to specialists based on her own findings. By the time she made her way to qualified university specialists, she was already doing better than she had in years. By working in cooperation with her new specialists, within a year of being diagnosed, she is now feeling better than she has in over a decade.
As a former scholar, writer and educator, it would have been anathema to Capricious’ nature to withhold everything she’s learned along the way, so she started this blog to share the wisdom she gleans along her path to healing with other patients who are like herself. Like every journey of scientific discovery and path of recovery, it’s neither perfect nor linear and there is no magic pill. These pages hold successes and failures, triumphs and tribulations. She shares not only what has brought her relief and healing, but also what it’s like to be born broken in a world that only values perfection and what it’s like to be forced into solitude because of that brokenness. She shares the psychological aspects of what it is to be disabled and how that interplays with any issues of mental illness one might have, such as her own PTSD as a result of childhood trauma.
Capricious honed her research skills with her BA in Women, Gender and Sexuality Studies from Bowling Green State University, an MFA in Creative Writing and a not quite completed MA in English from National University. She has worked in the higher education, non-profit and aerospace sectors in the fields of English, marketing, women’s health and human resources.
Capricious has hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS), making her what is known as a trifecta zebra. She suspects she also has gastroparesis, but this is not yet confirmed. Her other confirmed diagnoses include Fibromyalgia (FMS), Chronic Fatigue Syndrome (CFS), Degenerative Disc Disease (DDD), Osteoarthritis (OA), Endometriosis, Polycystic Ovarian Syndrome (PCOS), Chronic Migraine, Irritable Bowel Syndrome (IBS), Complex Regional Pain Syndrome (CRPS), Interstitial Cystitis (IC), and Complex Post Traumatic Stress Disorder (CPTSD) and more.
While I spend most of my time on what it takes to keep a body like mine in decent working order, I also try to achieve a good balance in my life between that, blogging, spending some time on creative endeavors and spending time with my loving husband. In my leisure time, I like to read, watch movies and television, write poetry and fiction, dabble a little with paint and pen and see what I may of the world as my symptoms allow.
Why Capricious Lestrange?
Say it out loud 5 times fast! Get it? Capriciously strange? Yes, it’s a bit of a tip of the hat to Harry Potter and how I feel on high anxiety days (I confess, I’m a bit of a screamer and sometimes I have hair just like Bellatrix on bad pain days, too). The real key is the first name, which I learned first while studying for the GRE with my now Ex partner. She held up a flash card and read, “Capricious: inclined to change one’s mind. That’s you!”
She smiled and laughed, letting me know she was joking. I didn’t return the smile. I didn’t make the connection until many years later that the reason this was true was because I always had big dreams and since I’m emotive I always spoke them out loud, but often had to scale back or give up on those big dreams because the realities of my own limitations would soon set in. I’m also not exactly the conventional sort, so I came up with the pseudonym “Capricious Lestrange” because I feel the chronically ill are probably all looked at this way to some degree so this is my conscious reclaiming of a fallacious stereotype, which sort of has a long history in activism. I may live my life one stop forward and two back due to my limitations, but today I can live my life not just in spite of all the judgments about how long it takes me to accomplish something, but without giving two hoots they even exist and I hope you can, too!
In January, 2018, The Zebra Pit was nominated for a Liebster Award! We’re proud to have been nominated and hope it speaks to the quality work we’ve been doing. You can read more about the Liebster Award here, and see who we nominated in turn.
Just a few of the nice things folks have said about the Zebra Pit and Capricious Lestrange 🙂
“Your blog posts are so interesting. You have your eyes open to a lot of things connected with chronic illness. You are a fantastic writer. Keep the amazing work up.”
“Your Blog and posts inspire me and keep me motivated. Seeing how much of an impact simple, at home exercises can have has been so helpful. I also have a few of your recipes in my meal rotations. Thank you for doing what you do!”