NACOGDOCHES, TX (KTRE) - Living in chronic pain is a misery lots of people face.
For a Nacogdoches woman, her constant aches serve as a reminder of an earlier pain that she would take back any day.
Rhonda Posey is a survivor of an incurable disease that doctors know little about. She lives with Arachnoiditis, which is an emerging and formidable disease that is difficult to live with.
And difficult to live with.
"It's an incredible amount of pain. I feel like my spine is on fire," Posey said. "My legs are on fire, yet my skin feels cold. I know it makes no sense at all."
Arachnoiditis is a pain disorder caused by the inflammation of the arachnoid.
"Right here is the arachnoid lining," Posey said.
Its function is to protect the nerves of the spinal cord. When the nerve roots are disturbed ...
"They stick together," Posey said. "They bundle up together."
It leads to the severe pain. The disease developed after a routine spinal injection for the relief of much more tolerable back pain.
"The spine had been punctured so the corticosteriod injected went too far," Posey said. "I remember waking up during the injection and I screamed out in pain."
The intense pain that followed was difficult for Posey to describe, so she showed her doctor this disturbing drawing that she found on the Internet. It helps describe the cramps, twitching, and the grueling sensation of needles pricking her skin. After one year, she finally got a diagnosis that she has the progressive, incurable disease of arachnoiditis.
"Sometimes that answer is not what you want to hear, but at least you know," Posey said.
Posey's life is far from the avid master gardener she once was.
"I went from a go, go, go to a complete halt," Posey said.
Depression and grief led her to counseling. Rather than pursue legal action, Posey spends what energy she has on advocacy work.
"I'm an advocate for the Arachnoiditis Society for Awareness and Prevention," Posey said.
This summer, Posey maneuvered airports with walkers and wheelchairs to attend a conference in Montana to hear the one doctor that specializes in the research of Arachnoiditis. Posey is now his patient.
Last year, Posey traveled to Federal Drug Administration hearings concerning the safety of epidural spinal injections.
"My voice is better served helping others," Posey said.
The sale of homemade bath products at the Nacogdoches Farmers Market helps Posey with expenses. Her church, support from other arachnoiditis patients in Texas, and a sense of hope keep her motivated.
"In all aspects I am a survivor. In the beginning, I had no hope," Posey said. "I felt like that was the end."
But now on good days, Posey walks through her garden looking for inspiration to make it through that day and the ones that will follow.
For more information on Arachnoiditis, visit this link.