Sidebar Story

PHOENIX — At the tender age of 15, Jennifer Ray underwent what should have been a straightforward knee procedure to prevent recurrent dislocation of her patella. 

 

What she anticipated as a routine recovery period instead became the commencement of an enduring battle with Complex Regional Pain Syndrome or Reflex Sympathetic Dystrophy. 

 

A rare and presently incurable neurological disorder formerly designated as RSD.

 

"The diagnosis came within six months," Ray explained, "However, in 2005, medical knowledge regarding CRPS was quite limited. Consequently, despite having received a diagnosis, there existed no well-established protocol for treatment."

 

The discomfort initially started in her knee before progressively furthering first to her connected leg, and ultimately throughout her entire body. 

 

As of now, she endures systemic manifestations, encompassing chronic inflammatory responses, heightened sensitivity, cutaneous lesions, and visceral pain.

 

 "It commandeered my existence in ways beyond my capacity to envision," Ray remarked.

 

Ray maintained employment within the culinary and beverage service sector for approximately fifteen years. 

 

However, in 2018, she was compelled to seek disability benefits as her condition deteriorated beyond manageable parameters. 

 

She subsequently required nasogastric tube feeding and suffered from syncopal episodes, persistent nausea, and debilitating fatigue. 

 

The psychological impact proved equally significant. 

 

"My sense of self-worth and psychological well being reached unprecedented nadirs," Ray stated. "CRPS does not merely assault one's physical form. It undermines one's very self-conception."

 

Confronted with isolation, Ray established a community. 

 

Upon discovering an absence of local support resources, she founded Rising Phoenix CRPS.

 

A charitable organization and peer support network that now provides assistance to fellow sufferers. 

 

"This collective represents my principal source of fortitude," Ray noted. "Despite my role as facilitator, I continue to derive substantial support from its members."

 

Presently, Ray addresses her symptomatology through ketamine infusion therapy, psychological counseling, respiratory techniques, nutritional discipline, and robust interpersonal support. 

 

She has abstained from analgesic medications for in excess of eight years and maintained sobriety for more than three.

 

"I perpetually engage in self-improvement endeavors. My current objectives are predominantly personal by addressing traumatic experiences, conducting introspective examination, and cultivating appropriate social connections,” Ray said. 

 

To individuals newly confronting this diagnosis, Ray proffers this counsel: "You need not face this challenge in isolation. Identify your community. Support mechanisms are accessible."

 

And to the broader society, Ray offers this advice. 

 

"While CRPS may be imperceptible, its reality is incontrovertible. We do not solicit sympathy, merely empathy. This represents the foremost necessary transformation,” Ray said.