Union Leader Op-eds November 13, 2024 Jenn Coffey: What it’s like to live with the ‘suicide disease’
CRPS can develop from a sprained ankle or even cancer. It’s a life sentence, one where 70% of those affected — from children to the elderly — turn to suicide. It’s the most painful disease known to medicine.
It shouldn’t come to that; there are treatments. It’s frustrating to see the corner CRPS patients are pushed into. It’s a hell that I beg you to understand, to do more, and to demand that everything possible be done.
It is the withholding of treatments that leads to lives being lost. I was diagnosed with breast cancer. After surgery, I woke up in excruciating pain. The surgery left me with a paralyzed core muscle and CRPS. The only treatments I could access involved nerve blocks, opioids and narcotics.
I alternated between a state of fear and wishing for death. After more than two years of being bed-bound, ketamine infusions released me from that prison.
The word “normal” has a different meaning now. My normal feels like parts of me are on fire, with my legs vibrating and each step feeling like I’m walking on broken glass in a briar patch, wrapped in barbed wire. My foot feels like it’s burning. I can scratch my skin raw trying to soothe an itch that won’t stop. I can become frustrated and may appear angry or “paingry.”
I experience vertigo, brain fog, and mild cognitive impairment. I can lose thoughts, periods of time, and memories of people or events. I often joke that I can experience something for the first time more than once, but it can be disturbing.
When I do something. I have to consider every aspect, including going up and down the stairs to leave my home, walking to the car, and sitting up with my feet down instead of elevated.
Mentally, it is exhausting to function in even the most basic ways. One day, I might feel well enough to attend an event, but the next day I may struggle to move and reach the bathroom.
The involuntary movements that jet my leg or arm out, come with a sharp electrocution-like feeling. The muscle spasms in my left chest and abdomen lead to exhaustion and require an incredible amount of mental effort just to survive and function — let alone find ways to have a life worth living. Secondary hypertension causes flushing, sweating, shortness of breath, and difficulty completing tasks, even with medication.
I wish I could still be an EMT saving lives, but now I struggle to take care of myself. I used to be the one that others leaned on, and now I find myself needing to lean on others. That trashes the once proud view I had of myself and my work.
I’ve spent the last year fighting for access to the medical care I need to stay alive. The fear and worry of losing that access is constant. When I became ill, I lost everything: my career, my house, my marriage — everything. Depression is always lurking.
I have ketamine infusions every three months now. Over the past two years, the introduction of LDN (low-dose naltrexone) into my medication regimen has allowed me to manage some symptoms slightly, although it is another medication that I pay for entirely out of pocket. Unfortunately, the effectiveness of LDN has diminished over time.
I experience intense pain flares regularly and that has become a “normal” part of my life.
People often throw the word pain around without truly understanding its implications. There are medications, infusions, and treatments that can provide a quality of life worth living, not one where you dream of death whenever you manage to fall asleep. Unfortunately, these treatments are currently available only to those who can afford them, even charging cash to Medicare patients. So-called health insurance companies deny claims and delay treatments, leaving people with only one solution.
We pay our premiums and contribute to the system our entire lives, only to find ourselves fighting when we need it most. I dedicated my life to caring for the sick and injured, volunteering for years with the singular goal of saving just one more life. That was my source of pride, the one thing that made my life feel meaningful. Health care was the only place where I truly felt I belonged, and then CRPS stole that from me.
Existing with CRPS is one challenge; having a quality life is an entirely different battle. It’s maddening that people are merely existing because they cannot afford access to life-saving treatments. This is American health care at its worst and we are the only ones who can affect change.
For more information on CRPS/RSD visit rsds.org