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Life with a Chronic Illness: The destination; Not the Journey

Posted Nov 16 2010 12:00am

My name is Trudy Thomas and on April 4, 2005 my life as I had know it, ended. I was diagnosed with Reflex Sympathetic Dystrophy (RSD) aka CRPS (Complex Regional Pain Syndrome). The cause? A simple hand surgery on my right thumb which should of healed in 6 weeks and never did.

I was the sole breadwinner of my family; my daughter was in her senior year of high school. Bright, intelligent she was headed to a bright future in the college of her choice. I had a satisfying, lucrative career, traveling weekly all across the US visiting client sites and could have afforded her  the best education money could buy.

Physical therapy was the first line of defense. Next came a series of Stellate Ganglion Blocks (SGB). Dozens of medications were tried. Nothing helped and I continued to get worse. In the next 2 years, my RSD began to spread. It consumed both hands, legs, my jaw and eyes to the point that I could no longer read. I experienced episodes of dystonia so violent the thrashing around of my limbs caused muscle tears. I stuttered when I spoke, short-term memory was non-existent and I became paranoid, prone to anxiety attacks which eventually got so bad I never stepped out of my house except for doctor appointments.

My doctor wanted to amputate the right hand; I refused. Surgery for the RSD patient usually causes the disease to spread. There is no cure for RSD; even the cause of it is unknown. Doctors eventually become discouraged because they can’t “cure” us and tend to just use medication to mask the symptoms. My neurologist calls RSD the “Mother of All Neuropathies”. Nerve pain feels like your entire body has been soaked in gasoline and set on fire. At my worst, even my hair hurt. My husband walking too close to me and stirring the air would cause me to wince with pain; every fiber and nerve in your body is hyper-sensitive because the sympathetic nervous system is effected with this condition.

Wheelchair bound, homebound, drugged to the point of oblivion, the burning pain was so intense it hurt to breathe. I was unable to dress myself, eat without having someone cut up my food, bathe, brush my hair or even make a phone call because I could not remember how to use my own cell phone. My husband became my full time caretaker even though he health was also bad.

RSD does not kill you; it just makes you wish you were dead. Suicide is the #1 cause of death for patients suffering from Reflex Sympathetic Dystrophy. Loss is such a common thing with any chronic illness; loss of income, loss of friends, lost of independence and loss of self-worth. We had spent our entire life savings in those first few years before I finally got social security disability. After 40+ years of working, I was reduced to starting all over again.

In March 2009, I had a procedure called a “Trigger Point Injection”. My new doctor suggested I try to get off my medications since some of the pain had been reduced in my hand. He had a suspicion the medications themselves were causing some of my problems. I decided to try again. Several years ago I had tried to wean myself off and went into a flare that lasted 2 years. But, I knew my life HAD to change. I had no quality of life; I was waiting to die.

The next 2 months were the worst in my life. The withdrawals kept me sick, the pain increased, I started having convulsions and hallucinations. Yet, I was determined to see it through. The alternative was unacceptable. I started taking mega doses of vitamins and minerals because I couldn’t keep any solid food down. I learned how to mediate, do visualization, praying; anything to keep my mind occupied. I discovered hot wax therapy, mirrorbox therapy; de-sentization. I tried anything and everything I could find that did not involve drugs or surgery. Positive affirmations became a daily habit and as my mind cleared all of this became easier.

Today, November 2010, I am drug free, pain is under control most days (under a 5) and I am walking again with assistance. Physically, I will never be the same. My right hand is atrophied and on my left hand only one finger works but mentally I feel wonderful. I have made connections with others suffering in pain, isolated and try to reach out and let them know they are not alone. To show them there are many people who understand the depth of their loss and their pain. I restarted my radio program, Living With RSD , and it has become not only my lifeline, but my way of giving back to the people who helped me in my darkest hour. To reach out to people and let them know they do not have to suffer in silence!

It is certainly not the life I dreamed about, but it is a life worth living.

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