After being diagnosed with fibromyalgia, Jenny Kanevsky learned to stand up for herself, eliminate stress, and do what she loves—to find her new normal.
In early 1999, I was a newlywed and in a new career after years in software marketing. I was completed a training program in financial services and become a licensed broker in securities and insurance with a well known firm. As per their model, I was to build a local business and open a small neighborhood office. I would interact with a diverse group of people in my tight knit neighborhood, and do something new. And I was going to work 60-70 hour weeks for a future payoff of high earnings, flexibility, and independence.
During the training and early days, I traveled to the home office, I canvassed and door-knocked in my neighborhood and met with other small business owners. I was excited. But my body was not. I pushed myself. I powered through. But my body rebelled. And, eventually, after huge out-of-the gate success, I quit.
I had no choice. Several months before this transition, I had been in a minor auto accident. Although minor, because of the angle of my body on impact, I suffered severe whiplash. The accident also triggered an auto-immune system response and multiple chronic issues that have become my new normal.
At first my long-time internist led me to believe, I was fine. “Just get moving kid. Get back out there. It was a fender bender, you’re young. Sure your back hurts a little. You’re fine.”
I was not fine.
I worked long days, but I’d done that before. I’d even traveled through multiple time zones and popped up for meetings the next day. After the accident, I’d sleep 12-14 hours and wake feeling like I’d been run over by a truck. By the end of each day, my brain was scrambled, my body in so much pain, I’d weep. I never felt rested or clear-headed. I forgot about appointments and missed deadlines. And that was totally unlike me. I had always been an organized go-getter. I felt like I was falling apart. I was terrified. My body was not healing; in fact I was getting worse.
It was after talking with a friend who had recently been diagnosed with fibromyalgia (FMS) that I knew. At the time, many in the medical community did not believe FMS was a real disorder. My own doctor laughed at me. Laughed at me and said, “If you want to think you have a little fibromyalgia, that’s fine. I think you just need some exercise and lay off the butter.” (What? We don’t even use butter!) Apparently, my cholesterol was high. I was shocked. I tried to hide my tears, I was so distraught, tired, depressed, and unlike the person I’d been pre-accident. But something strong in me pushed through. I said, “I’d like a referral to a specialist.” And I fired my doctor.
This was after months of rest, exercise, medication, and chiropractic care. Blood work and x-rays revealed nothing, or so he claimed. In fact, he’d dismissed another red flag, possible thyroid disease, I had all the symptoms. My blood work was considered “normal.” (Thyroid disease and FMS are sister illnesses. Often one triggers the other.) I soon discovered that, at the time, a “normal” thyroid range was ridiculously broad. For example, the old “normal” TSH range was 0.5-5.0. In 2003, this was revised to 0.3-3.0. Mine had been 3.9. In addition, I had all the requisite symptoms, fatigue, depression, pain, confusion, and high cholesterol. And my doctor shamed me. Today, I feel best when my TSH is at 0.88-1.0.
I saw a rheumatologist who, within 20 minutes, diagnosed me with FMS. He also referred me to an endocrinologist for my thyroid. Upon further testing, he immediately put me on thyroid replacement medication. When he called with the results he said “I’ve never seen someone with your levels function well enough to drive themselves to the appointment. You’ll feel better in six months to a year.” What? Yes, it takes at least that long to stabilize.
So here’s what I learned from pushing through my illness, fighting the medical community, and finally getting the correct diagnosis.
I became my own advocate; as a patient, and as a person. There is no replacement for instinct; you know yourself best. I was newly diagnosed with an autoimmune disorder (FMS and accompanying thyroid disease) for which there was not only no cure, but which was, at the time, ridiculed by many in the medical community. “Oh, it’s all in your head.” No, it wasn’t. I’d always stood up for myself, but doctors, they have those special letters after their name. I stopped being intimidated by that. I started doing my own research and I took care of me. I learned how to manage a little known illness that is now, sadly, common. I asked questions, I fired doctors who shamed me; I did research and I got copies of my test results. I took action.
The second thing I did, at the gentle recommendation of my new specialist, and with the support of my husband at the time, was quit my job. I prioritized myself and eliminated stress from my life. My doctor said, especially given my new career, I could count only on getting worse. My spouse said “I hate coming home to you in tears and exhausted every day. That’s no way to live. We’ll figure it out on one income.” And that was it. I quit. I didn’t have to ponder; I didn’t have to weigh my future career path. I had, before the illness, plans to make a large income. I admit it; that was a goal. My perspective shifted in an instant when I realized I had an incurable and poorly understood illness that was exacerbated by stress, that I was miserable, and that I had the power to help myself.
I have had FMS for over 15 years now and can tell, within days, sometimes hours, when a flare up is coming based on stress, weather, illness, and time of year. I have come to understand my body and illness that well; because I got quiet. I sat still. I rested. I let myself have flare ups, and I lived through them.
I also learned to let go of control. I still struggle with this. I like predictability. After my diagnosis, I simply could not be reliable, especially in the early days. If I had plans a week in advance, there was a good chance I’d have to cancel. Even day-to-day I couldn’t predict how I’d feel. That was hard for my friends, and my spouse and I felt guilty. Sometimes, I forced myself to do things my body wasn’t up for. And I paid for it.
It took two years to understand and manage my illness. Flare ups, sleep, chronic pain, limited abilities, my emotional state, and most terrifyingly, my mental state. With FMS comes what we call “fibro fog.” Fibro fog is the loss of concentration, even on the most routine tasks. I’d get lost on the way to appointments, routes I’d take hundreds of times. Suddenly, I’d be in an unknown neighborhood, pulled over by the side of the road, in tears, confused, terrified. For a woman who had lived alone in foreign countries and was self-sufficient, I felt like I was losing my mind. I wasn’t. It was a sign. I needed to rest. I needed to heal my body.
Now, I know my triggers. I don’t go to large events with big crowds, or if I do, the next day is a rest day. When I go to the dentist, I take the day off, because that’s a trigger. If it rains, I feel lousy. Over the years, my body taught me how to take care of myself, and how plan ahead for my needs, and to let go when I have to miss something. Self-care over predictability; it’s worth it.
Finally, my illness gave me the best gift of all, the time and space to realize my passion. I let go of my drive to make money, have, be, achieve, and measure my success based on no-longer useful metrics. There came a point in my illness and care regime, because I was managing my illness and feeling better, when I got bored. My creative self was wanting. A scheduled “job” was not an option, even part-time. I didn’t know from one day to the next if I’d be able to work.
My passion had always been writing, from black and white marbled composition notebooks in grade school, to my alternative high school where I studied creative writing and poetry, to my bachelor’s degree in English. Something clicked. I decided to write a mystery novel. I signed up for an evening class with a local mystery author and wrote page one. And then page two. That was her advice, just page by page. There was, of course, more detailed instruction but for a writer, it came to me. With an outline, patience, and lots of editing, several hundred pages later, I had a novel.
I did what I loved when my body was able. There was no judgment if I had a day when I didn’t write. No pressure, no timeline. I just wrote. And, I was fortunate to forge a mentorship with this instructor. I edited, and edited, and edited and finally my novel was accepted and published by an on-demand publisher in 2004. I recently re-released a revised version of my novel, Chosen Quarry, on Kindle.
Today, I am blogger and a regular contributor at several web sites, including The Good Men Project. I am a mother to two wonderful boys, now ages 13 and nine. My illness meant tough pregnancies, but I have no regrets. I write as much as I can, and when I don’t feel well, I rest. I have made life changes to accommodate my illness; I’ve had to. I’m not rich like I fantasized, at least not financially. I lived, and loved, in Seattle where the cold, damp climate kept me sick most of the year. I now live in Austin where the sun shines and the warmth heals my body. And, I hurt every day. I have since 1998. But, that’s my normal. Some days I hurt so much I can’t move. I go on steroids for a week, people drive my kids to school and I am bedridden. Some days aren’t bad although there are other reminders that my body is not the same as others’. So, I take it easy, take a nap, order take out, and go to bed early. Or, I go for a walk in the sunshine and I feel better. It varies. And all of this is OK. I would not have this life if not for my illness. I learned to trust myself, to slow down, and to do what I love. Do I complain sometimes? Yes, I’m human. But this is my normal.