Traversing the Minefields
By Linda Young
Like a purveyor of fine wine or food, I am a purveyor of a neurological disorder that has impeded my body but not sacrificed my mind or soul for the past eight years. CRPS (Complex Regional Pain Syndrome) or RSD (Reflex Sympathetic Dystrophy) as it is commonly referred to is worthy of the acronym “CRAPS!” One day you are waltzing through life easily and gracefully and all of a sudden you wake up one morning with a leg that is blue and mottled. No doctor is able to diagnose the problem as you rotate between all of them. First, there is the internist, the orthopedist, then the neurologist, the rheumatologist, and the pain specialist. Everything is ending in “ist” and there is still nobody to help.
By now you are sensitive to the touch and on a scale of one to ten your pain is “off the charts.” There is no number in the world that can equate with what you are feeling! There are no answers. I always thought that doctors were supposed to have answer. How myopic I was in my thinking. In the meantime, you are sweating profusely and your bed sheets can’t even touch you, not even your clothing can touch you for fear of screeching pain. You are literally naked and alone, stripped of your inhibitions, your center of gravity, and your good karma. The MAC truck could arrive at your front door and put you out of your pain and suffering for all you care. Your hope is waning and then the blue mottling and gruesome pain spreads to your other leg.
Alas, a pain specialist through one of the foremost and well reputed hospitals in Los Angeles puts a name to what you have. COMPLEX REGIONAL PAIN SYNDROME! “What the heck,” “why me,” and “how come this happened” is racing through your mind. Unfortunately, you are void of immediate answers. Albeit, more tests are undertaken including seven spinal blocks, a brain scan, a whole-body scan, and other ongoing forms of radiation. This egregious disorder is starting to wear me out but it’s not going to take me down. You reach a point where living is the best and only alternative. So, you move forward until this so called “revered” specialist no longer believes you have CRPS and is unsure as to what you have.
Frustration, a high level of angst, anger, and even the need to throttle this doctor who assured you he would intervene is prevalent. Your legs have begun to atrophy, you have a knee brace the size of Mt. Rushmore, and are walking with a cane. This is once you conjure up enough strength and courage to get your pitiful poor aching body out of bed. Now there is no hope in sight!
One frequents emergency rooms for pain relief, you can’t urinate properly, and skilled doctors and nurses tell you that there is nothing wrong. “It’s all in your head!” There is talk of seeking out an herbalist in Santa Monica or visiting an acupuncturist. Where do you turn as the road slowly narrows?
I suffered for two agonizing years but I was one of the lucky ones. “Why?” you may ask. Because I had Rolls Royce medical insurance and access to the best doctors anywhere in the country. I knew that no matter how debilitating this disorder was I could conjure up enough hope to move forward. I have seen the unlucky faces of those who are in worse condition. I have seen those who have also been told it’s all in your head. I have seen those who have accessed a never-ending pool of doctors. I have seen those who are cringing in pain, and I have seen those who have no access to the appropriate medical insurance and have been turned away by many a doctor’s office.
This invisible disability made me fight like hell! I endured the mind-altering opiates, I endured the grueling physical therapy and I endured the millions of nights screaming and writhing in pain. I traversed the minefields for two years until I could seek out a specialist who would affirm and confirm my previous diagnosis. Yes, I had CRPS/RSD. Unfortunately, I had lost precious time! The disorder had spread to a point where any and all pain signals could not be shut off in my brain. And now, both my arms were impacted by this insidious disease.
I lost my ability to teach, I lost my ability to play tennis, I lost my ability to partake in Yoga and Pilates. But, I never lost my ability to appreciate or embrace life. Eventually, I had a spinal cord stimulator implanted and consider myself one of the lucky few that has had remarkable results. My life has broadened and become even more enriching. I now know what it is like to go to the top of Mt. Scopus and watch the sun set, I know what it is like to walk along the Seine, and I know what it is like to hear the morning sounds during Tokyo’s rush hour (Linda shared a photo of her in Tokyo). A life well lived and even more purposeful and guided.
Editor’s Note: You may contact Linda Young via email at firstname.lastname@example.org