When I was 36 I got mono and never recovered. Three years later I was diagnosed with Chronic Fatigue Syndrome, Fibromyalgia, and Sjogrens' Syndrome.
I had to stop working a couple of years later as these illnesses shifted into a cluster of serious, then life-threatening autoimmune diseases. I have polyarthritis, polymyositis (a muscle wasting disease), pulmonary fibrosis (17% lung function), Reynaud's syndrome, mixed connective tissue disease, chronic migraine, and a clotting disorder.
What began as something I thought I'd recover from has become progressive and chronic, living with illness and pain as my constant companions.
Why this all matters to me
The IVig I was taking to save my life was giving me meningitis...
To recover I spent months alone, in excruciating pain, propped at a 45° angle, unable to tolerate light, sound, or touch. It was the most isolating and painful experience of my life. I was connected to oxygen full time, my lungs were failing and I had nothing but pain to distract me from the feeling of suffocation.
Slowly, after fighting the experience, being afraid of it, and avoiding it at all costs, there was nothing left to do but surrendered to it, and I began to change. I learned to love every part of myself in new and deep ways. I healed past hurt and ancestral traumas. I changed my epigenetics. In a particularly dark time, words of an old hymn came to me, "when peace like a river attendeth my way, when sorrows like sea bellows roll; whatever my lot, thou has taught me to know: it is well, it is well with my soul."
Since coming through that episode, my purpose was solidified – how to find "well with my soul" and how to help others to do the same.
A few words about my background
My pronouns are she/her/hers. I am a queer artist and writer with activist values.
I started my career as a sign language interpreter. After getting a master's degree in conflict resolution I went on to work in higher education as the director of services for students with disabilities, and later as a trainer on a federal education grant. I ended my career while working at the county as the manager for equity and training. The through-line in my professional life is communication and training.
Living with pain and illness as my traveling companions for more than a decade I've learned some things about how to enhance my quality of life. How to do more with less. How to create "positive buoyancy" in bodies that seem like they're trying to sink us.
Pain and difficulty make it easy to forget that these skin suits are actually wired for pleasure. I want to to join those who are struggling to find the path through chronic illness and pain. Together we can develop a map for you to follow towards joy, wonder and increased vitality.
Fun facts about me
Two magical dogs grace our home. One is a 75-pound pit bull named Deli. Mabel is a 12-pound fraggle who is always calling for backup (her big sister). Both come when called for meals to a song entitled "All dogs on the rug."
My grandmother taught me when I was eight. I find it so meditative you’ll rarely catch me without needles in my hand. However, I don't need anymore knitted items! So, I'm always looking for friends who do. Find me on Ravelry @flutteringby.
You supply me with a topic and I can spontaneously sing you a song about it with rhyming lyrics to the tune of either “The Love Boat” or “Pretty Woman.” Its great for parties or you can try it on our next call!
Let's be in touch
I send out newsletters from time to time and I never sell your details.