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A High Degree of Uncertainty

Published on May 6, 2020 under RSDS General Info

This piece was written by Jenny Picciotto and first appeared on ForGrace.org.

My journey with chronic pain began with a repetitive stress injury to my foot from playing tennis. Tennis was new for me, but it was an activity my husband had loved his entire life. With kids approaching college, I saw it as a common interest that would sustain us into our lives as empty nesters. I took up the game and dreamed of playing doubles together well into our sunset years. We joined a social tennis club where I found friends and developed a love of the game.

My retirement fantasy was not to be. I developed pain in the ball of my foot that felt like bone grinding into the ground. In 2010 it got so bad I couldn’t put weight on the ball of the foot and had to stop playing tennis. I could barely walk. That was the start of a year and a half of conservative treatment. After orthotics, ultrasound, cortisone injections, and PT, I was referred to an orthopedic surgeon in November of 2011. He promised I’d be back on the tennis courts in three months.

That’s when my life changed forever. Within weeks of surgery, I had all the classic symptoms of Complex Regional Pain Syndrome (CRPS); extreme swelling, swift color changes, and intense burning pain. Despite a quick referral to a pain management specialist and aggressive treatment, my condition deteriorated.

CRPS is a chronic and sometimes disabling neurological pain disorder; characterized by a cluster of symptoms including swelling, changes in blood flow, activation of immuno-inflammatory agents, and intense burning pain. The skin may turn red or blue, and get shiny. There can be muscle weakness or spasms. The muscles can lock into rigid contraction. The affected area can be so sensitive to touch that a light breeze or immersion in water causes intense pain. Then there are the changes in temperature, swelling, sweating, and insomnia. Even common sensations like sound or light can trigger pain. It does not follow a nerve path, but presents regionally in a stocking and glove way.

It took about a year for the burning, prickling, icy pain to spread from my foot to the rest of my body. I had tremors and spasms, joint stiffness, and sensitivity to sound and light. Although the doctor prescribed an extensive list of medications and performed numerous procedures, I could no longer work and spent most of my time in bed. I needed a cane to walk short distances and an electric cart in stores.

In addition to pain, I suffered from isolation, anxiety, depression, stress, and grief. Afraid of the strange sensations in my body, I worried about the future and grieved the loss of everything I knew as myself. Treatments weren’t helping, and my pain specialist held out little hope of improvement. I felt trapped in my body, an unsafe and hostile environment, and lost in a maze of emotions.

Working with a skilled pain management psychologist transformed my relationship with pain. He had lived with chronic pain for many years and shared my interest in Buddhist thought. His mantra was that when we resist our feelings we get stuck in them.

What he asked me to do was counter intuitive. Rather than tensing up and resisting, he wanted me to turn toward the pain. To acknowledge, accept, even embrace, everything I was feeling. It was terrifying and only possible for brief moments. Stepping out of the shower I’d pause to let the pain wash over me, then step off the bath mat and draw my protective shield back on.

We are often our own worst critics, agonizing over parts of ourselves we wish were different, better, less flawed. Living with high impact chronic pain brings a whole new level of criticism to our inner dialogue. For many, the struggle to come to grips with what has happened and how it has affected us hurts as much as the pain. But our thoughts and feelings affect our nervous system, and emotional suffering generates physical tension that can make pain levels rise.

Facing pain is complicated. Sensations and our thoughts about them are knitted together. As I developed the capacity to be with my experience, without judging it or pushing it away, it got easier to untangle. Separating the pain from my thoughts about the pain created a space between the sensation and my reaction to it. In this space I cultivated compassion for my suffering.

When I could catch the specific words I was thinking, they seemed to lose their power over me. Instead of resisting them I was free to observe them, and compare them to reality. Always and never are usually untrue. I discovered that under my thoughts layers of undigested feelings lay hidden.

Over time, this practice helped me tune in to my body, identify triggers to my pain, and process my grief. By acknowledging and accepting the suffering I felt alongside the pain, I was no longer consumed by it.

Over the years, my condition has improved. I still have severe pain and physical limitations, but now I focus on living with the pain, not getting away from it. Pursuing my interests, writing, cooking, playing piano, and facilitating a support group, brings meaning to my life. The future is uncertain, but that is simply the nature of being alive. We can only live one moment at a time, not knowing what the next might bring.

I am just at the start of my journey with cancer. In September of 2019 a mass was discovered during a routine mammogram. I have dense breast tissue which can mask cancer, so my gynecologist ordered 3D tomography. A week later I was called back for a recheck and ultrasound. It was just another day, then it wasn’t.

The weeks between testing and results were surreal. My husband and I felt suspended between alternate realities, contemplating the fact of our mortality.

I am the poster child for early detection. My invasive ductal carcinoma was small and had not yet spread to my lymph nodes. After the biopsy and genotyping I learned that my chances of survival are high. Treatment would include surgery, radiation, and hormone therapy.

Since then I have mustered every skill I have to manage the fear and anxiety that accompany this disease. Accepting that it would be unpleasant and unpredictable, I did my research and made a plan. I would focus on each intervention one at a time, crossing each bridge only when I reached it.

I practiced noticing and acknowledging my feelings and fears. Noticing created space to explore, problem solve, and choose what I needed in that moment. Sometimes it was information. Sometimes it was laughter, or a distraction. Other times, it was reassurance. When I was in touch with my thoughts and feelings, even those of terror and depression, it was possible to soften and accept instead of tensing and pushing away.

Still recovering from treatment, it’s unclear what my new normal will be. I don’t know if the lymph edema and pain will resolve, or what side effects I might have with long-term hormone therapy. The future is full of uncertainty.

But the truth is that we all live with a high degree of uncertainty, and much of our suffering comes from fighting with what is. None of us are guaranteed safe passage through any given day, and many people suffer silently with invisible pain.

I don’t believe that things happen for a reason; that is a slippery slope toward guilt and blame. I believe that things happen, and when they do, we determine what those events mean to us. We are all together on the same journey, experiencing the incredible beauty and tender frailty of this terrific and terrifying journey called life. Let us be kind to ourselves and one another along the way.

Jenny Picciotto is a writer and CRPS patient who enjoys reading and playing the piano. She was a yoga instructor and massage therapist before CRPS changed her trajectory. She currently lives in Hawaii, where she facilitates the Oahu CRPS Support Group.

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2 Comments

  1. Kellie Slater

    Hi Jenny,

    Thank you for posting your story. Normally, thise diseases (not syndrome!) is extremely hard to live with, but now with COVID 19, it’s even more so. I count on hearing the voices of folks living in my state, during our once a month now phone conference call. It’s a lifeline. All of our stories are so similar. It lets me know I am not alone in this and in your case, you had the objective evidence to go along with the feelings of this intense pain. Thank you for sharing your story, Jenny! All the best, Kellie Slater, Washington

    1. Jenny

      Hi Kelly,

      Thank you very much for your response and support. I believe that storytelling is healing, both for the person who can reflect on and digest their experience by sharing it, but also for listeners who recognize their own struggles in the experience of others. I am so happy to hear that it resonated with you. Although we can’t chose what will happen to us, we can affect how we respond to it.

      Wishing you all the best too Kellie Slater! Gentle (virtual) hugs. <3

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