I have a bone disease without a cure, and surgeries only made it worse. I had four surgeries on my neck. For my third surgery, doctors took bone from my hip to replace the eaten away disc in my neck only for it to break before I left the hospital, and now my hip will never heal, and I have days that I must use a cane. It was after that surgery that doctors diagnosed me with a rare incurable genetic bone disease. The operations only made my condition worse, as the vertebra in my neck became even more damaged and unable to regenerate or heal. The pain of my bones grinding against each other, my blood vessels being cut off, losing all circulation down my arms, and becoming paralyzed in certain parts of my body have all taken a toll on me.
They then diagnosed me with Ochronosis/Alkaptonuria, a rare incurable genetic disease that is known to be non-operable and that is located in my spine. It turns my bones black after eating away all the cartilage and disc from between each bone, leaving me no choice but to take pain pills. Now they are saying they will not fill my prescriptions even though I have been a very reliable patient through all these years. There are no exercises, food, or drugs that will take away this disease. But, I have been able to keep this disease from spreading by changing my diet and living as healthy a life as possible – without stress, which is the leading cause of the HGA levels that attack my bones, turning them black, unable to regenerate, and grinding against each other with every movement of my body.
I will die if I am made to live in so much pain. My disease has already spread down my spine and now is attacking the valves to my heart. If I die because of the inhumane way this country is treating chronic pain patients, Veterans, and others, I will make sure my family will sue everyone – CDC, DEA, FDA, and all the politicians emboldened in causing my death – all from being denied a medicine that I had been taking safely for over twenty years. I am suffering just because some greedy doctors over filled the synthetic form of the medicine that I take, when I don’t even take the synthetic form! The synthetic form of morphine that was being over-prescribed is not the safe, regular, natural morphine that I have been taking for so many years.
This is why I am sharing my story. I am more than open to anything that will allow me to live without this pain; but until there is such a medicine that is as safe as the medicine I have been taking, then please do not take away my quality of life! I even have medical records proving the morphine I have been on has done no harm to any of my organs. I wish I could ask the politicians: did you not think of people like me when you made your laws? Were incurable diseases not considered? I thank you, Share Your Opioid Story, for your compassion and all you do. I ask anyone reading this, please will you help people like me? I am not alone.