I am a chronic pain patient. As a child, never in my wildest dreams did I envision life leading me down this path. I had other plans; things I was going to do that would make a dramatic impact in the world.
I had no idea that I was born with a debilitating disease that would completely take over my life.
And I had no idea I was going to end up advocating for others like myself.
Once I was diagnosed with Medullary Sponge Kidney, or MSK, I sought out others that were also diagnosed with disease, which causes kidney and bladder infections, calcification of the kidneys, and repeated episodes of extremely painful kidney stones. I heard stories from other patients who are having the same difficulties as me — including the way we are treated, not only by medical professionals, but sometimes by our own families,
Initially, I did not plan to advocate for chronic pain patients. Not because of the stigma that’s involved, or the decision of the government and DEA to launch a full blown assault on this particular group of people, but because most people are not familiar with MSK and I wanted to spread awareness about the disease.
Since starting my mission, I find myself advocating for chronic pain patients in general. We don’t have anything to hide or be ashamed of, because we’ve done nothing wrong, and many of our stories are horrifying and gut-wrenching, and need to be told.
According to the Institute of Medicine, around about 100 million Americans suffer with chronic pain. The IOM also states on its website, “Pain is a major driver for visits to physicians, a major reason for taking medications, a major cause of disability, and a key factor in quality of life and productivity. Given the burden of pain in human lives, dollars, and social consequences, relieving pain should be a national priority.”
I couldn’t agree more with that statement.
The statistics, goals, and accomplishments that some states and media outlets are reporting in this war on drugs are staggering to say the least. The state of Florida is winning the war hands down, there is no denying that.
The problem is though, the stories that I’m getting from actual patients aren’t jiving with what is being reported. For instance, according to Florida’s Prescription Drug Monitoring website, the very first goal they list is to “Support access to legitimate medical use of controlled substances.”
However, according to an online petition signed by over a thousand patients and healthcare providers, that goal is not being met. Patients with prescriptions for opioid pain relievers are repeatedly being denied access to their medications. In some cases, they’ve missed work because they end up driving around for hours trying to find a pharmacy that will fill their legitimate prescriptions. I have personally experienced this.
What benefit is it to patients for doctors to write prescriptions if they are unable to get them filled? Something is very wrong here.
I plan on bringing some of these stories to you in upcoming columns. Stories about people who are being hurt the most by this war on drugs; with no viable options to take care of themselves, let alone their families. Stories of hardship, suffering, persecution and discrimination. These stories infuriate me and make me cry, and at times make me question just how free our nation really is.
I will show you the human element to all of this, and that the casualties of this war are far greater than you may realize. Somewhere along the way, humanity and compassion were lost in favor of personal agendas and witch hunts. I believe it’s time for us to make them priorities again.
A public rally in support of chronic pain patients will be held in the courtyard of the Florida State Capitol in Tallahassee on Wednesday, September 12th at 9 am. This rally is being organized by Donna Ratliff, a chronic pain patient advocate. Patients, family members, caretakers and health care providers are encouraged to attend. More information on the rally can be found at the Fight For Pain Care Action Network, a Facebook group.
Editor’s Note: Mary Maston suffers from a rare, congenital kidney disease called Medullary Sponge Kidney or MSK. She is an advocate for other MSK patients and a contributor to kidneystoners.org
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