Thank you for allowing me to be a part of this group of special people who have to fight each and every day of their lives to deal with excruciating chronic pain. The source of my chronic pain happens to be a rare, incurable disease called Reflex Sympathetic Dystrophy (RSD), aka Complex Regional Pain Syndrome (CRPS), in which the sympathetic nerves get overstimulated and constantly send pain signals to the brain. I hope to be an encouraging, supportive addition to this community, as I will transparently share the details of my 13+ year journey with neuropathic pain, as well as inspirational items that will, hopefully, help to prepare each of to face another day of challenges, as well as victories, as well as remind us that we are here to serve others who struggle with pain of every kind to find courage and hope to live our lives as vibrantly and selflessly as we possibly can to show others on the verge of giving up that anything is possible IF WE DONT GIVE UP. I want to share with you an email that I sent out to my local news stations and also to the newspaper in my hometown of Memphis, TN back at the end of September, which was National Pain Awareness Month, in an effort to share my story of life with RSD/CRPS, as well as with Chronic Pain to, hopefully, bring about an awareness of RSD/CRPS and Chronic Pain in my community. I hope it helps you to understand my journey with this disease, as well as the reason why I joined this group of courageous people who live with this terrible disease on a daily basis. It is incumbent upon us to help our family members, friends, colleagues and others to see what life is like, not just for us, but for ALL Chronic Pain sufferers/survivors throughout our nation and around the world, and how resources need to be allocated for further research and support for the RSD/CRPS community and other terrible diseases that can make life a monumental challenge on a daily basis for even the strongest and most courageous of us. If we ALL do this, our respective communities may just realize how important it is for people like us to be supported and encouraged to try to see life beyond the pain we endure for the sake of our loved ones, friends, co-workers and society, as a whole. Lets unite so that our voices may be heard in a collective chorus: WE WILL NOT BE IMPRISONED BY OUR PAIN, FOR WE WANT TO LIVE OUR LIVES, SO THAT WE MAY BE OF SERVICE TO OTHERS WHO SUFFER FROM PAINFUL CIRCUMSTANCES. WE ARE SURVIVORS, NOT VICTIMS! So, here is my story, better yet, OUR story: Theres something that Ive kept a secret, something thats tremendously affected my life & the lives of my wife & kids for the past 13+ years. Recently, I decided to reveal this secret because I hope that in sharing this information, I might bring awareness to the widespread, but neglected subject of chronic pain, & the effects it has on the lives of those who are affected by it in this nation. Did you know that chronic pain, to some degree, affects one (1) out of every three (3) people in this country, or 100,000,000 people overall. Chronic pain causes more disability than cancer & heart disease combined, and it costs this nation between $565 & $630 billion in lost work days, productivity, medial expenses and other benefits annually. And these are just a few facts about the effects of chronic pain. I was diagnosed with a rare, and extremely painful neurological disease called Reflex Sympathetic Dystrophy Syndrome (RSDS), also known as Complex Regional Pain Syndrome (CRPS) about 9 years ago after surgery I had to release an entrapped ulna (funny bone) nerve in my right arm. That condition was one of the after effects of a stroke-like episode that occurred a few months prior to the surgery. RSDS/CRPS is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. RSDS/CRPS occurs when the nervous system and the immune system malfunctions as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain. There is no known cure for this horrible disease, and the pain associated with RSDS/CRPS is the MOST PAINFUL disease on the McGill Pain Index. The daily, unrelenting pain is rated higher than the pain associated with natural childbirth, the pain of the amputation of a limb, & cancer pain. This terrible disease is responsible for more suicides than any other cause of death. Why is that? Well, first, the pain is extremely excruciating, and as one fellow sufferer noted in an article I recently read, it feels as though youre sitting in an electric chair with bolts of electricity running through the infected areas. The second reason it contributes to so many suicides is because the patients of this disease give up due to a lack of support from their families, friends and community. Many times, the family members & friends of the patient, who are ignorant to the facts of the disorder, think that the person affected should just suck it up and deal with it. Just imagine the effect that such inconsiderate, uncompassionate words can have on someone who may be on the brink of making the decision of giving up their life. Personally, I have it in my face, my neck, my upper back, both arms down through the ulna nerves into the forearms into my hands, & specifically affecting the last two fingers of my hands. I am in constant, burning, intractable pain on a daily basis, and have been since my neck surgery in 1999. In 2001, I was involved in a terrible car accident, in which the right side of my face was de-gloved or detached from the underlying layers of nerves and tissue in that particular area. Not only is the pain unrelenting & excruciating, the trauma caused most of my teeth to slowly die, causing them to be removed. The pain in my right elbow became worse after surgery to release the entrapped ulna nerve. How would I describe my level of pain? Just imagine someone dousing your hand (or whatever the body part is) with gasoline, lit it, setting it on fire, and that fire stays lit CONTINUOUSLY for 24 hours a day, 7 days a week FOREVER, or, hopefully, until a cure is found. And expect that pain to progressively get worse over time. Most people I know have difficulty having a migraine for a few days, much less for 13 years. Thats my daily reality. Researchers and physicians do not currently know what causes RSDS/CRPS, but it is recognized as a neurological disease that usually occurs after a traumatic injury, surgery, sprain, fracture, or an extended period of immobilization. The principal symptom is pain that is dramatically disproportionate to the injury. RSDS/CRPS pain can occur anywhere in the body where there are nerves. Most commonly it occurs in the four extremities, but it has been known to occur in areas such as the eyes, ears, back, face, etc. And RSDS/CRPS has been known to spread to other parts and organs in the body. There are many patients who now have full body RSDS/CRPS. Chronic pain, such as that caused by RSDS/CRPS, often leads to severe depression, because the unrelenting pain affects every part of our lives. It affects us physically, emotionally, psychologically, financially, socially, & spiritually, just to name a few. Because chronic pain can involve diseases that, like RSDS/CRPS, are invisible, it causes the sufferer to be criticized by those who cant see their pain. And, because of that reason, many people suffer in silence, as it is difficult enough to endure such indescribable, never-ending pain alone than to add the callous condemnation of those who dont care to understand the nature of our suffering. As chronic pain survivors, we would rather desire to receive EMPATHY & support from others, rather than SYMPATHY from them. It is because of RSDS/CRPS that I am completely disabled and unable to work so that I can adequately support my family. It also has driven me into a severe, extensive depression. There is not a day or week that goes by that the seductive thought of suicide doesnt enter my mind. Ive actually come very close to choosing that final, irrevocable option for myself. This disease has taken away our ability to celebrate Christmas and birthdays like most people unconsciously do throughout this nation and around the world. Like many others who suffer from this disease, I have lost the relationships of the few people I once considered to be friends. And, as a result of that trend, I became more and more reclusive as time passed. My wife and kids have known the desperation and frustration of feeling helpless as they have watched my level of suffering increase as the pain has each year. My love for them is the ONLY thing that has kept me alive. I dont feel like a real man, a good husband and father because of my inability to work and do the things that most men do for their families, without thinking twice about doing. Pain can, indeed, take you to some very dark and desolate places that many people think that they would NEVER go to. And, I have yet to meet anyone who would like to trade places with me just for a week. As October will be both Breast Cancer Awareness and Domestic Violence Awareness month, in an attempt to will be made to bring the publics attention to the hardships, struggles, trials and successes by those who suffer from these vital & important issues, we also need to educate the population of the circumstances that the sufferers or chronic pain and their families face. In fact, in many cases with both breast cancer and domestic violence, its victims can categorize their situations as chronic pain suffering. I bet you didnt know that September was & still is (in the 2 days remaining), National Pain Awareness Month? It was conceived by the American Chronic Pain Association to create awareness, & educate the public, & hopefully, in doing so, also generate hope and compassion for those of us who battle chronic pain daily, reminding us that we are heard, validated and never alone. This is the major reason why I chose to come out of the shadows now to share my story with those of you who care about the quality of the lives of your fellow brothers and sisters in this world. I finally came to believe that by telling my narrative to others, I could, in turn, advocate, educate & empower those who are either too weak, or in too much pain to help themselves. The epidemic of PAIN is too great and too WIDESPREAD to continue to be marginalized and trivialized by the political and media leaders of our society. Ive decided that I want to make a difference with my life before it ends. And, though, I despise the pain that makes life miserable & extremely trying, I must consider the possibility that this is the reason I was put on this earth: to advocate on the behalf of other sufferers/survivors of chronic pain. So, for that purpose, I will no longer be silent. And, with Gods help, Ill one day overcome this tremendous adversity. I would like to ask you to help me in my effort by going to some of the links that I will provide below, & read about the impacts that chronic pain and, specifically, RSDS/CRPS can have on the lives of those who are affected. Your action could help you, one day soon, or a family member or friend right now. Thank you for your time and attention regarding this important issue. theacpa.org/September-is-Pain-Awareness-Month rsdhope.org/ ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm American Chronic Pain Association - September is Pain Awareness Month The American Chronic Pain Association - support and education in pain management for people with pain,... theacpa.org American Chronic Pain Association - September is Pain Awareness Month The American Chronic Pain Association - support and education in pain management for people with pain,... theacpa.org — in Memphis, Tennessee.
Posted on: Wed, 05 Nov 2014 13:52:14 +0000
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