Letter of Courage #5 – For Grace

In December, two months after I was diagnosed with RSD, broke and practically homeless, a friend called me to say that she had been sharing what happened to me with a friend, Samuel. Having lost his father to a misdiagnosed health issue, Samuel wanted to share his experience with me so that I would be proactive in seeking access to care and treatment.

Since then, Samuel has checked in on me at times, sending me suggestions, always at the right moment, for resources to help me remain strong. So it was his email arrived this week after seeing the neurologist.

I am told that the MRI on my brain and neck will be moved up from May, and that I am going to be transferred to an RSD specialist, six months after the initial diagnosis. I have been told I will be transferred back to the hospital where I was injured and originally diagnosed, so that I will be able to see the neurologist more than once a month.

Do I sound as one of little faith? Perhaps its little strength, to fight what feels like a mammoth system that could wind me up in knots with legal briefs till the day I die. I have decided instead to seek alternatives, to improve my own health, and to activate the ancient knowledge of old times within my body, mind and spirit to heal myself right out of what I am being told are the options for my future.

I don’t understand why I have this disease, but I do know I can at least try to educate myself and others about the experience.

According to the “McGill Pain Index,” the pain associated with RSD ranks among the highest degrees of pain a patient endures. Out of a possible score of 50 (50 being the most severe pain), RSD scores 40 points compared to childbirth at a score of 32, cancer at a score of 25 points and fractures at a score of 18 points. Considering the severity and scope of RSD, it is hard to understand why many government agencies such as Worker’s Compensation, Social Services, etc., are still relatively ignorant of the suffering that RSD victims endure.

Samuel sent me this site, which today has been a god send for me – its called For Grace.

For Grace is a site started by Cynthia Toussaint who has had RSD for many years now. According to Toussaint, it is uncommon for more than one family member to have RSD, which is usually sparked by an injury. After the person has an injury, the nervous system sends a message to the brain notifying it of the pain. Unfortunately, RSD patients continue to get the message of pain sent to the brain.

‘With RSD, that message can’t shut itself down. It continues to amplify and the injury heals normally, but the pain signal never goes away,’ Toussaint said.

RSD is a curable disease only if it is caught within three to six months of the injury where it can then be treated with nerve blocks and physical therapy.

According to Toussaint, many RSD patients don’t get the care they need and are not diagnosed early enough.

This week marked six months since I was diagnosed with RSD. As I come to realize that the system in which I was hurt will not place healing as a priority, I need to seek out alternatives. I have faith I will be healed.

For Grace offers a powerful resource, which tonight, gave me hope in the face of the largest challenge I have ever faced. I realize I must start informing, and educating myself about RSD.

Reflex Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome, is a debilitating, chronic pain disease that, if not properly treated, often leaves its sufferers confined to a wheelchair or bedridden.

The disease typically begins after an injury and, in fact, it was first discovered among wounded soldiers over a century ago during the Civil War. RSD is caused by an overactive nervous system and is estimated to afflict between 1.5 and 6 million people in the United States—exceeding those with breast cancer, HIV/AIDS and multiple sclerosis combined.

While RSD is most common among women, it does not discriminate on the basis of age, race or gender. It can happen to anyone at anytime.

There are several progressive stages to RSD
and it can spread to any and all parts of the body.
Severe, burning pain is the most common
symptom. Sufferers describe the pain as if
“doused with gasoline and lit on fire.” Even simple sensations such as a gentle breeze or vibration
can send one into spasms of unrelenting pain.

To date, the only chance for a cure is with immediate and aggressive treatment by RSD experts, which rarely occurs. Otherwise, as the disease progresses, the effectiveness of treatment sharply drops off.

Those with RSD often suffer devastating personal, financial and social hardships. If the disease is left untreated, the sufferer can expect a lifetime of pain and disability, abandonment by family and friends, financial ruin, social isolation and depression. All this makes life with RSD a supreme challenge.

Always a fighter, I suppose I was given the fight of a lifetime.

I am going to begin exploring alternative treatments and learning more about this world I knew nothing about six months ago. I realize that I have been forever changed but I still have the ability to transform.

I accept the challenge.

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