A poem about my disease RSD and what's it's like to live with daily chronic pain. |
RSD - stands for Reflex Sympathetic Dystrophy. It is a chronic pain illness involving the nervous system of the body. The pain that comes with RSD is a burning continual pain that requires heavy medications such as what I presently live on which is lyrica and oxycontin, just to get through the day. The body sets up a "pain loop" after an injury (for mine it was simple arthroscopic knee surgery) or surgery or trauma, that never stops and is completely disproportionate to the initial injury/surgery. The brain then begins a chronic pain loop as it sends swelling to the site, which when that doesn't work, the brain then sends cold, or hot...in a never ending cycle of trying to heal it. The nerves are in a constant state of agitation and pain, causing burning, pain, muscle loss, skin disorders (skin becomes shiny and thin), bone loss, etc. Paula Abdul of American Idol fame has come forth noting that she suffers with this disease. It can cause crippling and deformity. I am blessed that I am able to walk and have not have those strong side effects of the disease, only the pain and swelling. Every night my entire leg turns purple. Even having fabric touch it at night is extremely annoying. There is no cure for RSD. Our only hope is that it will one day go into remission, though no one knows how or why that happens. That is my story of RSD. This is my poem about what it's like to have RSD and to hope that it will one day go into remission. ROLLER COASTER - RSD Oh twisted roller coaster I have been propelled to live upon destined to this contorted fate not of my own volition nor deservedly no fun ride this roller coaster RSD Reflex attacking at will deceiving my psyche into thinking though drug induced recovery may dwell upon the horizon and that one day we will stop at the station where I will depart at last to grab my shiny prize... remission Sympathetic chugging chain to the crest the sound tortures my brain as it abandons me on the opposite side to another day of pain Dystrophy Destined to remain forever strapped to this wicked ride praying for moments of peace I am a prisoner of it's clutches comfort may come at any time and just as quickly fade to be replaced by searing pain spreading and flashes of insane heat damp sweat spasms leg burning arms aching and yet it starts again could it be at last? this time on the up side of the Roller Coaster RSD Reflex sunny day happy ride pain subside drugs are working just for today I anticipate a visit with my former self (the one who doesn't ride the coaster) Sympathetic hope wells up within this is it (excitedly) could healing come at last? Does the shiny prize (remission) at last arrive into my hand? Dystrophy dash it all to hell the chugging chain begins back at the wretched drop point for that fleeting moment I thought I held the prize but alas my palm lay empty for this ride RSD never ends hope ever remaining some shiny dangling object whizzing by it with each lap teasing me well out of reach passing it over and over with each twist and spiral of the Roller Coaster God if this be your will that I am destined to ride I know you will be at my side and one day I pray You will take me to the station. |