How I Fell Upward After Letting Go #USPainPAM17
A little over one year ago, I couldn’t raise my arms above my waist; drive my car for longer than 10 minutes; or sit upright without neck support.
This month, I not only started 200 Yoga Teacher Training through Hot Asana, but I’m also wrapping up a successful marketing consulting project with RTI International’s lab sciences and technological innovation business unit.
Given the recent displacement of hundreds of people due to natural disasters and political unrest, it hardly seems to matter. Yet for me and more than 100 million Americans suffering from something that doesn’t often make the news headlines — Chronic Pain — it’s worth celebrating as part of Pain Awareness Month (PAM) #PAM17 #USPainPAM17.
September was designated as PAM to increase awareness about how pain affects families, communities, the nation and individuals [like me] and to support those suffering from its debilitating physical, emotional, mental, and social effects. It’s been a privilege to work with RTI International and the dedicated scientists who are actively investigating science-based solutions for relieving chronic pain.
It’s been said that your struggle is your story; so as part of PAM, here’s mine.
Why I Blew Up My Life
I blew up my life a year ago to deal with the silent stalker that is chronic pain. Not in the “Fight Club” sense. Mine was a quiet explosion — maybe more of an implosion, to tell you the truth.
After wrestling with this pain in the form of unrelenting muscle spasms in my neck, shoulders, and arms beginning in 2013 — followed by neck surgery in 2014 — it was whiplash from a car accident in April 2016 that finally forced me to let go of life as I knew it.
The whiplash didn’t seem too bad at first, but after a week, it sent fire ants up and down the already irritated nerves and atrophied muscles throughout my arms, shoulders, neck, back — and even into areas of my head and jaw that I didn’t know I had. By May 2016, I could barely move my arms or even sit upright without neck support. It was time to leave my career and let go of life to focus on rehabilitation and recovery.
This Pain Awareness Month, I’m celebrating: After years of struggling with chronic pain, I finally found a multidisciplinary treatment approach that enabled me to escape the “terrible triad” of suffering, insomnia and depression and regain control of my life — without opioids, repeated surgeries, or other invasive procedures.
What is Chronic Pain?
Here are some key facts as reported by the American Chronic Pain Association:
· Chronic pain lasts. Pain is considered chronic when it continues beyond the usual recovery period for an injury or an illness. It may be continuous or come and go.
· Chronic pain, sometimes called persistent pain, can be very stressful for both the body and the soul and requires careful, ongoing attention to be appropriately treated.
· Chronic pain is often intractable, as the cause of pain cannot be removed or treated.
· Chronic pain is the number one cause of adult disability in the United States.
· Chronic pain can touch nearly every part of a person’s daily life. It also has an impact on the family and, because of its economic and social consequences, it affects us all.
· Chronic pain can be a source of frustration for the health care professionals who seek to provide care and assistance.
My Descent into Chronic Pain
“Midway upon the journey of our life
I found myself within a forest dark,
For the straightforward pathway had been lost”
July 2013 marks the beginning of my journey into chronic pain. It started with aching forearms and wrists. It’s also the same time I decided to become an entrepreneur. Timing couldn’t have been worse.
Ask any entrepreneur and she’ll tell you the same thing: launching and growing a business is all-consuming — physically, mentally, emotionally. Not to mention risky, especially when it’s completely self-funded. I had just won my first large client engagement. The deadline was tight. There was a ton of work to do and none of it could be outsourced. I dove in. For two weeks straight, I cranked on the project, sometime 10, sometimes 12 hours a day — including Saturday and Sunday.
After the first week, my forearms, wrists and back of my hands started cramping and burning. By late afternoon, my hands were so cramped that I had difficulty typing and using the mouse.
You ever ridden a motorcycle for a long period of time? Constant squeezing of the clutch can wear out wrist/forearm muscles and tendons — and can feel like carpal tunnel syndrome. I once did a solo ride up the Pacific Coast Highway from LA to San Francisco — on a Harley Fat Boy. The clutch on these bad boys is not made for small, weak hands. Since my hands are neither large nor particularly strong, by the time I hit San Francisco, I could barely release the clutch my hand was so cramped from clenching and unclenching. I had to pull over to the shoulder a few times to stretch and shake out my hands and arms — just so I could keep going. Imagine my hand cramping while trying to throttle up one of those uphill SF streets — on a Harley. Yikes.
Given the importance of the client and the looming deadline, I didn’t have time for uncooperative hands, wrists and arms. And with basic individual healthcare coverage and unknown future income, I had to avoid expensive office visits and/or unnecessary treatments.
So, I purchased a more ergonomic keyboard and keyboard tray; quit all activities that placed pressure on my arms — which was pretty much all of the physical outlets that kept me sane — strapped on wrist guards, swapped between ice packs and heat packs on the forearms, took aspirin — and kept cranking.
The Murky World of [Mis]diagnosis
By the beginning of September, I won more work with the client, so the 10-to-12 hour days continued.
The more I worked, the more the pain — constant cramping and aching with a burning sensation in the hands and forearms. Sounds like carpal tunnel, doesn’t it? I finally made an appointment with an orthopedist. A few x-rays and evaluation by the orthopedic surgeon later, I was diagnosed with bilateral forearm/wrist tendonitis. Why those X-Rays didn’t include my neck continues to haunt me. With bi-lateral pain radiating down both arms, why wouldn’t an orthopedist consider the neck? And what did this teeny, tiny oversight cost me?
Massage therapy, hot and cold packs, and some stretching/strengthening exercises were the treatment recommendations. I followed doctor’s orders. Even tried acupuncture. Instead of retreat, the pain attacked with more vigor. Imagine an extreme upper body workout at the gym — where you work the chest, shoulders, arms, and back with free weights. The next day you can barely lift your toothbrush to your mouth much less raise your arms above your head to shampoo your hair. Only I wasn’t working out at all.
What in the world was going on?
My primary care doctor was convinced that the culprit was fibromyalgia. I was convinced it was Lyme disease. A pain management physician thought it was Multiple Sclerosis. Another specialist said it was probably rheumatoid arthritis. Another doctor thought it was residual, chronic stress and chronic fatigue syndrome. A holistic healer believed it was trauma from a past life that I had failed to address. He and his assistant chanted over me.
It’s Your Neck
The diagnosis finally came in May 2014 from a rather bizarre source: an infectious disease specialist — the 2nd one I’d consulted. Within the first five minutes, he said the problem was with my neck.
“What? My neck? No way — that doesn’t make sense.”
“Did you get an MRI of your neck?” he asked.
“Really? Get one now. Make an appointment with a neurosurgeon. It’s your neck.”
He was right. The orthopedist missed it. The primary care doctor missed it — along with all the specialists, massage therapists, chiropractors — the whole lot of them.
According to the neurosurgeon, the cause was repeated trauma to my neck. It came in the form of waxing and eating a few trees from mountain biking racing, getting tossed out of the raft on class 4 or 5 rapids, banging against a rock face after losing my grip while climbing, landing on my head from doing flips on a trampoline, and doing a few endos (flipping over the handlebars) while off-road motorcycling — and even more traumatic — the not so sexy trauma of crouching over a computer for too many hours per day.
Anterior cervical discectomy is successful in relieving the pain (cervical radiculopathy) in 92% to 100% of patients. In fact, in many cases, the relief from the pain is immediate due to decompression of the nerves. Complete full recovery takes anywhere from three to nine months.
My neck surgery didn’t provide relief — perhaps, in part, because I was back at my computer, working like a maniac, only two days after being released from the hospital.
Welcome to the Pain Management Clinic
If you’ve never been –lucky you — the Pain Management Clinic is not so different from a divey Las Vegas casino in the late afternoon. Hope mixed with despair taints the climate-controlled air. You pay your money to the unsmiling woman at the counter — who’s more concerned with examining her “Red Hot Rio” lacquered nails than you — and you’re off to place your bets.
As you wait for your turn, you may see an elderly woman in a housedress — oxygen tank in tow. Instead of the blinking lights of a slot machine, her blank eyes are fixated on the big screen TV playing Dr. Phil or Dr. Oz.
Then there’s a tall middle-aged man with his hairy gut peeking out from the gaps between shirt buttons — cane propped against the empty chair on one side and on the other side, his wife leans in, whispering sweet words of hope and encouragement. THIS time he’ll hit the jackpot. This time he’ll find relief from pain. Just be positive, dear!
If the injections and other ‘medical’ procedures don’t keep you coming back out of a desperate hope for hitting the jackpot of pain relief, then the pain relief medication that they offered and prescribed in-between “treatments” certainly will.
I passed on the opioids, but according to the Centers for Disease Control, in 2015, the amount of opioids prescribed in the U.S. was enough for every American to be medicated around the clock for three weeks. Drug overdoses now kill more people than gun homicides and car crashes combined. In fact, between 1999 and 2015, more than 560,000 people in this country died due to drug overdoses — this is a death toll larger than the entire population of Atlanta. Opioids are responsible for nearly two-thirds of drug overdoses.
I bring this up because when seeking a multidisciplinary pain treatment program following the car accident in 2017, I discovered that the only in-patient programs covered by my insurance were those for “opioid addiction” recovery. Or suicide.
Back to the pain management clinic. Six cervical epidural steroid injections, two nerve blocks and one radiofrequency nerve ablation later, there wasn’t any pain relief.
There was, however, a car accident.
My Job Moment[s]
“Why is a man allowed to be born if God is only going to give him a hopeless life of uselessness and frustration? I cannot eat for sighing; my groans pour out like water. What I always feared has happened to me. I was not fat and lazy, yet trouble struck me down.” ~Job 3:23–26
The car accident, in many ways, could be considered a severe mercy. If it hadn’t thrown me into spasm, I would have continued — albeit unsuccessfully — to ignore the “terrible triad” of suffering, insomnia and depression.
I consulted a second neurosurgeon to determine if the accident had knocked something loose. It hadn’t.
“Full recovery is possible, but it’s not going to be easy,” my neurosurgeon said. “Like training for an IronMan after sitting on the couch for three years. It’s going to hurt a lot worse before it gets any better.”
Referred to a Physical Medicine and Rehabilitation doctor, I finally received encouragement to pursue an integrative, holistic approach that “considers the whole person and how she interacts with her environment. It emphasizes the connection of mind, body, and spirit” as opposed to an isolated body part.
Buoyed with hope, I was ready to get started. Sign me up! Let’s do this!
What my Physical Medicine and Rehabilitation doctor offered was more of the shuffle: I’d have to search for qualified providers for each of the treatments, see if they’re “in-network” by my health insurance, ask if the provider is taking new patients, send over my medical records for the initial consultation, schedule a series of treatments, and somehow drive myself to them.
Since I couldn’t raise my arms above my waist; drive my car for longer than 10 minutes; or sit upright without neck support, I searched for in-patient treatment programs that would help me get past the acute stage. Unfortunately, I didn’t qualify for the programs that my insurance did cover, which focused on opioid addiction or suicide.
How I Came to Durham, NC via Costa Rica
I expanded my search to include non-medical, non-US-based options. As I was compiling the research, a friend of mine introduced me to Evelina Bolognini, founder of Holis Wellness Center in Manuel Antonio, Costa Rica. A Holistic Practitioner, Master Bodywork, and movement instructor, Evelina believes that “health is not only the absence of infirmity and disease, but also a state of physical, mental and social well-being.”
Her holistic therapy program is an integrative approach that combines D.E.I. Kinesiology, Craniosacral Therapy, Structural Balance and Movement private sessions as well as group classes, meditation and massage therapy.
After hearing my story and assessing my rehabilitation goals, she created a customized program that included accommodations that were within one block of the wellness center. Finally, one location with multiple treatments under the supervision of one therapist.
In order to finance the program, I moved all of my belongings in storage, and decided to relocated to Durham, North Carolina to stay with my sister upon return to the US.
By the time I arrived late one night in Manuel Antonio, Evelina herself checked in to ensure that I had arrived and was settling in. Overwhelming gratitude for such a small kindness. Then Maggie at Villa Nicholas helped carry my bag to my room upon check-in. Sitting there inside the room that night, feeling exhausted and in so much pain I could barely move, I felt something stir from deep within me. Overwhelming gratitude for these two small acts of kindness.
When you’re in pain and shuffling from one clinic to the next, you feel like an empty vessel. Just a burning, aching, miserable body. While all of the medical professionals I’d met throughout the “shuffle” were professional, it always seemed so impersonal. After all, you’re a patient. It was then I realized I wasn’t a patient anymore. I was a seeker of health and wellness.
As I walked to the center that first morning and caught glimpses of the crashing waves of the Pacific, that stirring from deep within expanded. And then I remembered the name for that feeling. It was hope. It floated all around me — in the sticky, salty air; in the swaying palm fronds; in the blue sky; even in the weeds growing through the cracks in the pavement.
One year later…
The neurosurgeon was right: rehabilitation has been a long and painful process — not only physically, but also emotionally, financially, socially, professionally.
I think St. Francis of Assisi also got it right when he said “Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.”
I never thought I’d do another “downward dog” or take on another large consulting project again, yet just today, there I was, doing what was impossible just one year ago: attending a 75-minute Hot Yoga class in the morning, then leading a social media training session for a group of scientists at RTI International during lunch.
Spread Hope this Pain Awareness Month
If someone you know is suffering from Chronic Pain, please share these words of encouragement from Michael R. Clark, M.D., M.P.H., Associate Professor and Director, Chronic Pain Treatment Program, Department of Psychiatry & Behavioral Sciences, The Johns Hopkins Medical Institutions. These words helped me find Costa Rica and Durham, NC.
1. First, expect more. Patients with chronic pain should never settle for less. The goal of treatment is to alleviate all the manifestations of their illness and to return to them the benefits of health. Ideally, no pain and full function. While this may be difficult to attain, the striving for success will force reassessment, refinement, and creativity in an ongoing process of treatment that keeps the relationship between patient and practitioners strong.
2. Next, Be active. Patients with chronic pain cannot be passive. Waiting for relief to be provided is no strategy for regaining control of your life. Do something, not nothing. . . . Patients should always be thinking about their situation and how to improve it. Asking questions — what do we know, what did we do, what did we learn, and did that help us? — keeps the focus on problem solving and coping.
3. Finally, stay optimistic. Pessimism and hopelessness are not the inevitable outcomes of chronic pain. New information, investigations, techniques, medications, and equipment are constantly being developed. Each one offers hope and opportunity for improvement. The combinations of treatments for designing new plans are unlimited. There is always something else to do, a next step. No patient should ever reach the point at which they hear, “We’ve tried everything.”
In the meantime, Namaste. Thank you for reading my story and for sharing the journey.