(View this article on The Mighty here.)
You might hear me on the radio, maybe saying too much or sounding emotional about my medical care. About having illnesses with no known cures, which never get better, but do get worse. Knowing each loss of physical ability is never going to come back, unless or until there is a cure.
I have very real years of things just like this, and worse, being done to me, to treat what has no approved treatment known to modern medicine. For the small fiber neuropathy and complex regional pain syndrome (CRPS) that medicine has been studying for over 145 years, there is no cure, and no FDA-approved treatment yet.
This video is one of the hundreds of similar awful treatments that I used to have to endure (Warning: the video below contains a graphic medical images). I was also still having to take opioids and narcotics, just to manage taking a shower, but not much else. I lived barely in a haze, with torturous pain, and what now seems like a battery of medically medieval treatments. I barely functioned and had many moments when I didn’t want to be here anymore. Like 70% of folks with CRPS, I thought about suicide. I thought that even I can’t be such a horrible person to deserve this, right? I got cancer a second time. It’s not my fault, yet I felt punished for existing.
It is life-changing to now have humane treatments, where I never have to suffer. I never feel gaslighted, like I have to “suck it up.” I never cry out and feel the tears running into my ears, trying desperately not to move, silently screaming for it to stop. My partner, Matt, never hears me while sitting in the waiting room, screaming out in sudden and horrific pain. It could be a brief moment or several minutes. “You’re doing great, just a few more minutes.” I would hold my breath in an attempt to ease my pain, or at least hold in the screams. “You’re such a trooper; we’re almost there.” It’s up to me, right?
This was treatment eight years ago, about every six weeks. This was treatment for about four years of my life, before doing everything I could to buy my way into “experimental” treatment. There was no sedation or comfort meds unless you count injecting numbing agents prior to the 12-inch needle insertions, most often through my abdomen. Would you look, watching the needles, or would you lay back, close your eyes, and submit to what has been presented as the “only” treatment option?
[Warning: the following video contains a graphic medical images]
When I talk about my doctor saving my life, I am dead serious. I have dignity now. I have hope for future discoveries. I have a provider who brings in cutting-edge treatment options. Hearing about something new is not unusual. I’ve created a quality life, with the ability to take pride in what I do. People I have helped, and continue to, help to remind me and validate me to keep fighting.
They inspire me to keep writing and talking about medical care with dignity, narrative medicine, and expectations, and that we did nothing to deserve what violates our bodies, what causes my body to attack parts of itself. Treatments and infusions give me the ability to live, and I deserve to. We all do, and we, the forever sick, should not be defined by our illnesses. In our strengths, we endure and count as valuable members of society, contributing to society and deserving life.
Humanity needs to be put back into the treatment of chronic pain, by having more doctors like the providers I have now. Supporting and asking for personalized palliative care. Advocating for comfort medications with treatments. Everyone is worthy of the best medical care there is, the most humane care possible. Medical equality has a long way to go.