But I Still Look Fine- Living with Chronic Pain/CRPS
By Guest Blogger Tara White, RN, (Disabled)
I used to be a very active woman. I proudly served as a corpsman in the United States Navy for five years. I went to Nursing School and loved working in Obstetrics for twenty years. I climbed the difficult back of Half Dome in Yosemite National Park twice, and felt alive while cycling many hundreds of miles a year. I loved training with weights, power walking, skiing, kayaking, yoga, and many other outdoor activities.
Like many other women, I made a very poor choice of a first husband, though got a wonderful daughter out of the deal. Raising her by myself with microscopic child support but tremendous family support, I’ve watched her bloom into a lovely woman in her own right. Although I didn’t realize it at the time, my inner light was shining brightly. I looked fine.
It started out as carpal tunnel, although I did not have the typical presentation. My wrists ached and I couldn’t even get my left (dominant) arm in a position that didn’t produce horrible nerve pain. After surgery, I fully expected to return to work as a nurse until retirement. But, it didn’t work out that way. My pain changed after surgery but never went away. I made an attempt to return, because that’s what nurses do. Diagnosed with Complex Regional Pain Syndrome (CRPS), my hands, wrists and left elbow felt like they were on fire or had hot wires shoved in. I only made it a few months. But, I still looked fine.
It took two years for the guilt and shame of not being able to work or “pull my share” to slowly evolve into acceptance. Needing purpose in my life, I turned to the American Chronic Pain Association and became a Facilitator for the Sacramento area. I wanted to help others suffering from debilitating chronic pain. Luckily, prior to being hurt, I had met the love of my life and we married nearly two years later. God knew what he was doing when he gave me an engineer. I would need his wonderful skills many times over. So that I could continue cycling, he designed time trial bars so that I could ride (yes, I was always peddling) as a stoker in the back of a tandem while he controlled everything from the front. We toured Europe and nothing gave us more joy than the freedom in Grand Mother Nature on a bike. A health nut, I continued exercising with my legs and taking care of myself. I was still disabled, yet I could still do many of the things I so loved. But, I still looked fine.
Then, nerve problems reared their ugly heads in my left leg. I stumped physicians because none of my symptoms fit neatly into any category. Multiple nerve entrapment surgeries later, I could still keep going. I could still worship Mother Nature by cycling and long walks. The recoveries were tough, but with my wonderful husband by my side, I could still be me. And, I still looked fine.
Now, as I write this everything has suddenly changed. I tried to do too much too fast, and I find myself suffering anywhere from walking on needles, to electrical jolts, to exquisitely painful electrocutions. I am praying for the courage and hope to go on, and choose to stay in denial. I can do no more than walk around the house, to the mailbox, or a light, short errand. My physicians are trying, but I have many “extra” inflamed nerves trying to fit into the space made for one, am a big scar producer requiring a repeat of previously done surgeries, and even produce scar formations the physicians have only heard of or seen at conferences. But, I still look fine.
I continue to Facilitate for the American Chronic Pain Association and have added phone banking as much as possible for my heroine and Presidential Candidate, Hillary Clinton. (This, too, is difficult as I have one paralyzed vocal cord from thyroid cancer). I cry all the time, yet cling to hope. As a child’s life broadens from home, to school, to the whole world; mine is diminishing just as quickly in the opposite direction. I will go down fighting and clinging to denial. My inner light is fading fast. But, I still look fine.