It’s been four years since my last blog post and if there’s anybody out there still listening, let me begin with the positives:
I received my Master’s Degree in Humanities.
I landed a job as a Communications Analyst for the Colorado Benefits Management System at the Colorado Department of Human Services.
I bought a house in Everson, WA, where I now fully support my father, two equines, two canines, and one feline.
I overcame a severe 30+ year eating disorder. Yes, THIRTY-PLUS YEARS! Its roots began in childhood.
I’m working on the final draft of my first novel.
Wowza! Those are five significant life accomplishments and as silly as it may sound, as I look at this list I have the feeling of being outside of my body, as though I wasn’t the person who actually accomplished those things. As though I’m writing about someone else. Because it seems I couldn’t have possibly done all of that whilst struggling with all of this:
After I returned home from Europe in November 2019, I developed chronic insomnia and restless leg syndrome to the point where I was sleeping only 2 to 3 hours per 24-hour period. (It was COOCOOBANANAS and I partially blame it on my mother, whose basement I was living in, and who has a habit of stomping to the extent of rattling dishes.) Then, in the spring of 2020, my hands and feet suddenly began to turn bright crimson red whenever I was exposed to warmth or sunshine, and during even the lightest of exercise (such as walking on a flat surface in cool weather). With the redness was an intense burning sensation (like a bad sunburn), and dull (but very annoying) nerve pain. When I was exposed to cold, it was the opposite: my feet and hands became ghostly white or pale yellow, or sometimes, a mixture of both: disturbing patches of red and white. People would point at my hands or feet and exclaim things like, “Oh my goodness, do you have jaundice?" Or, “Your feet are terribly sunburnt, you should get out of the sun immediately.” My mother told me my feet looked exactly as they did when I had Scarlet Fever as a child, when my hands, feet, and mouth turned—hence the name—scarlet red.
It didn’t take long before there was no more normal; my feet and hands were either burning red or too bloodless to function. In addition, I developed relentless tinnitus, chronic migraines that lasted days at a time, heart palpitations, incredible fatigue, joint inflammation (particularly in my fingers), strange new allergies, and brain fog. After spending eight hours in an emergency room only to be told they weren’t sure what was wrong with me because my labs were perfect, I was diagnosed with erythromelalgia (the doctor had to Google my symptoms), combined with Raynaud’s phenomenon. Both are neurovascular disorders of the blood vessels, with Raynauld’s being the more common.
Since then, I’ve spent thousands of dollars on doctors, herbalists, supplements, chiropractic, massage, acupuncture, energy work, and even a psychic, but my symptoms have persisted. Frustratingly, there are no specific medical treatments for EM, as the root cause varies from person to person, and most doctors know very little about it (if they’ve even heard of it—most haven’t). Through research, I’ve come to understand that my own case is likely the result of an autoimmune response to COVID that triggered a form of neuropathic dysautonomia. In addition to the EM, Raynaud’s, heart palpitations, migraines, and tinnitus, I also experience acrocyanosis, bier spots, and bulging veins—all commonly seen in people who have postural orthostatic tachycardia syndrome (POTS). Thankfully, I do not have the more debilitating POTS symptoms, such as a racing heart and fainting upon standing up.
I’ve put off publicizing my condition because I worried that by writing about it, I would be giving it more attention, which would do nothing but encourage its troublesome influence on my life. But after four years of teeter-tottering between Boiled Lobster and Frozen T-Bone, I’ve recently come to accept that these symptoms are not going to just go away. I also have a pretty good hunch there are lots of people out there in the same boat, perhaps paddling frantically in circles the way I’ve been doing for the past four years. So, if you’ve been struggling with the same issues, please don’t hesitate to leave me a comment or reach out. In my next post I’ll share photos and some info about what’s helped and what hasn’t. Hang in there.
I’m smiling but my hands and feet are burning.
(The next post will show pictures.)