Jenny Coffey

@jenncoffey | contributor
Artist, former New Hampshire State Representative retired EMT, and two-time cancer survivor shares living with chronic illness and rare diseases. Stories discuss CRPS, Small fiber Neuropathy, Tamoxifen Retinopathy, and more.
Jenny Coffey

The Problem With the Way Laws and the Press Treat CRPS

The media loves to hype up a television series and as of late, they have destroyed public perception of CRPS (complex regional pain syndrome), as well as the experimental treatment of ketamine infusions. One would hope for a rare disease to be represented respectfully. Unfortunately, that often doesn’t happen. In television shows, it seems that most people who have CRPS are portrayed as drug addicts. A case in point is the instance of a disease affecting a man on a television show, “Station 19.” His storyline quickly becomes one of an opioid addict, who still works in a high-stress, highly physical job as a firefighter. He is told that he will only be given pain medication for a little while and needs to simply consent to a surgery to “cure” his CRPS and send him back to working at the fire station. These lies can cost real lives. For the record, there is no surgery to “fix” CRPS. There is to date no approved treatment for CRPS. It’s the most painful disease known to modern medicine and is nicknamed the “suicide disease,” as it is so bad that it drives people to stop living. There is no magic surgery, and for some of us it is not limited to one limb. There is nothing left of me that is not affected. If you search, you will see over and over again the demonization of ketamine infusions, the only treatment that has been found to work for CRPS, but is still limited in use, as it is considered experimental. Patients and providers are fighting to fix that, but that search I suggested will come up with terms like “psychedelic,” “legal high,” “trip therapy,” and the list goes on. Each one of these inappropriate terms causes people to see patients as drug addicts. Patients are also seen as not really sick. I’m certainly not a skinny person, which is what many people expect to see when they hear “sick.” Ketamine infusions have been found to help other conditions also, such as depression. That being said, readers can understand how hard it is to deal with an invisible illness, never mind adding an experimental treatment. I have personally been told that I am on an “animal tranquilizer” and must be just an addict. I have never “craved” ketamine. For me, it is like chemotherapy. They sedate me for over four hours to give me the medicine. Despite our best efforts and added medication for nausea, I often vomit from the treatment. My multisystem illnesses are very hard to keep stable. Yet stable here I sit. So yes, about every six weeks, I submit myself to infusion therapy and spend the day feeling not so great in order to gain a few weeks of decreased symptoms, and keep the ability to walk. Without treatment, it takes only a couple of months for me to become unable to get out of bed. Facebook has now implemented a policy that the word “ketamine” is verboten. When I try to go to my support group, I see a warning about illicit drugs. It reads, “Are you sure you want to continue? If you or someone you know struggles with drug misuse, there are organizations that can help. The term you searched for is sometimes associated with the sale of drugs, which isn’t allowed on Facebook.” Two steps forward. one step back. We have to once again fight to be seen as patients and not as drug addicts. I can’t tell you how discouraging it is to have a rare, incurable disease and have the one treatment that works be demonized. My treatment support group can no longer even type the word “ketamine.” Our support group, made up of patients and providers, gets a strike if one of us uses the word. Now on Facebook, anyone talking about ketamine has been deemed potential drug users. For over a hundred years there has been no treatment for CRPS. We finally have one, but we can no longer talk about it online. We have to type practically in code to keep our group together, the group that has been a beacon of hope for people with a rare disease. There is a group of providers who are now fighting for all of us in America to not only have access to the treatment, but have it approved by the FDA. The first step in the process has already been submitted by the ketamine task force of providers. If you want to see more information on the taskforce, you can find it at ketaminetaskforce.com. Once the treatment is recognized, patients will have access to their treatments through medical insurance. Right now, almost every patient pays out of pocket in full for the treatment. Having a right to try a medication doesn’t mean that your insurance will cover one dime of it. For far too many, this life-saving treatment is financially out of reach. My personal doctor has told me to hold on; he is doing everything he can to get our treatment approved, to force insurance companies to cover the very treatment that keeps me and thousands of others alive. My doctor is the vice-president of the task force. I was floored when I realized that not only did my doctor not close his doors at the start of COVID. I will never be able to say enough about this man. He saved my life and helped countless others. State laws reflect some of the lies the media portrays. In some states, “cancer” is written into state statutes that regulate pain medications. It is written in black and white that the worst pain is cancer, while other patients with extreme pain are questioned. It’s horrific discrimination based on old-fashioned beliefs. Cancer pain can be horrible; I’ve had it twice, but laws need to be based on science. My own state of New Hampshire has it in statute that “cancer” is the worst pain, a lie that costs lives. You wonder why 70% of CRPS patients attempt or consider suicide? I don’t; I live it and lose parts of my soul every time I see another post memorializing a friend. There are positive movements. New Hampshire actually changed its laws in a positive direction. When I presented in front of the New Hampshire Senate Committee on Health and Human Services and I realized that the Chair, a doctor himself, was nodding in agreement with me, I cried. He understood that the McGill Pain Scale is the medically recognized way to measure pain. Things like childbirth without medication are scaled higher than a broken bone. Cancer is not the worst pain on the scale; CRPS is. The committee led the way and the bill was passed into law. In part, the new law creates exemptions to the prescribing rules for situations in which an opioid is being prescribed for the management of chronic pain. I hope that we as a species “get it” when it comes to following science, and not political or sensationalized news for understanding a medical condition. A girl can hope. CRPS is not terminal, but it can mean living with pain worse than amputating a limb. Medical science has no idea why CRPS happens, and in over 145 years since its discovery, how to cure it. It’s a life that is full of treatments and medications forever. Can we now recognize science and adjust to meet current knowledge? Stop teaching providers and citizens false narratives, and start insisting on the best care possible for anyone, no matter what the disease is. I fear that until we succeed in this, we will continue to lose lives to complex regional pain syndrome.

Jenny Coffey

Bringing Humanity Into the Reality of Chronic Pain Care

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.

Jenny Coffey

Bringing Humanity Into the Reality of Chronic Pain Care

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.

Jenny Coffey

Bringing Humanity Into the Reality of Chronic Pain Care

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.

Jenny Coffey

Bringing Humanity Into the Reality of Chronic Pain Care

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.

Jenny Coffey

Bringing Humanity Into the Reality of Chronic Pain Care

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.

Jenny Coffey

Bringing Humanity Into the Reality of Chronic Pain Care

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.

Jenny Coffey

Bringing Humanity Into the Reality of Chronic Pain Care

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.

Jenny Coffey

How Limiting Access to Pharmacies Harms Chronic Pain Patients

I want to cover an issue that was born from illicit drugs, but has found a scapegoat in chronic, intractable pain patients. Patients stable in palliative care suddenly become the boss of a drug cartel. New limits on prescription access affecting arguably the sickest citizens among us. This is a unique problem affecting a fraction of those with incurable disorders, but make no mistake, it continues to cost lives. We need doctors making choices for patients, not legislators looking for the quick fix and a fast track to winning the next election. In order to curb opiate use and abuse, in some instances, laws were passed in haste. Federal stupidity in 2016, in the form of a recommendation by the CDC, caused a massive shift in care of the chronically ill. New restrictions on all patients who are prescribed controlled medications, not just those with severe incurables, cost thousands of lives. It’s an example of a good idea gone bad. This overreach born from illicit fentanyl use limits people to only one pharmacy, regardless of the individual patient’s needs or lack of prescription medication coverage. This makes real people choose which medications they can afford to fill, and which medications they will ration, or just do without. Limiting pharmacies has created an unfair financial burden on people most likely living on fixed incomes, with insufficient prescription drug plans. Large companies, like Goodrx, can negotiate prices that often dwarf insurance plans with high premiums, out of pocket expenses, and flat out refusal to cover life-saving medications. We hear all too often how legislators are trying to look out for patients, by putting blanket controls on how people can fill their prescriptions. When a pain patient is prescribed any controlled substance currently, they’re mandated to sign what is called a pain contract. It’s an agreement meant to protect providers and patients, or at least that is the garbage reason used to do it, as it actually causes chronic pain patients to be treated as criminal drug addicts. It micromanages a patient’s care, with no consideration for ailment or individual life situations. Common sense takes a back seat in the face of ill-placed and exaggerated fear. The penalty for violating this contract can, and often does, result in loss of access to medical care and medications. In other words, they fire you from the practice and refuse to see you in the office. Some have even refused to taper, cutting off medication refills, leaving someone to suffer what can only be described as torture. The contracts have a lot of built in restrictions, besides limiting your use of pharmacies to one pharmacy. On the surface, that sounds reasonable, and if the restriction was only on the control medications, maybe it would work better. However, it’s not, and depending on providers, you may simply be stuck between the proverbial rock and a hard place. You could be trading treatment for one illness over another. How do you make such a choice? Not all pharmacies are alike, as they are not equal in what they charge for a given medication. Here in the United States, people have to shop around for their medications. Insurance companies choose what your copay is, in part based on where you fill the script. It truly can become a situation of not enough money, so you skip medication. A harsh reality of how medical care in the United States creates population controls without trying. The reality is rarely kind to those with financial limitations, to accompany their incurable ailment and mounting medical bills. I now have four pharmacies. I only want to have one, but I can’t afford that. I have had to give up on access to medication. This year medications are more expensive, and my list of pharmacies has grown. My care is complex enough without having to deal with four different pharmacies. A list of pharmacists I could never know, and worse, they never get to know me. I really do miss that personalized care that I use to have access to. Being forced to shop this way for life-extending medications is not only awful, it’s dangerous. I used to have one pharmacy, with all my allergies and prescription history known. Heck, the pharmacist knew me not just by name, but by face. The pharmacist would at times warn me if there was a contraindication with one of my medications, especially over the counter medications. Now I have far too many pharmacists. I practically have a football team between the pharmacies. It can be a bear to ensure everything refills correctly. If I have a question I have to try to tell them my medical history and rare diseases that they have never heard of, in less than 60 seconds. My complexity only makes that 100 times worse. It’s awful to depend on someone to get things right when you are introducing a disease that they may not have even heard of. Yes, there have been times when they have said, “I don’t know. I’ve never heard of it.” If not them, who do you find the answers from? The point of trying to prevent doctor shopping, and attempts to fill a prescription fraudulently, has now caused a stage four cancer patient to post videos of how they were denied their prescription, because they dared to try to go to a cheaper pharmacy, or worse, the one that has the medication in stock. Some pharmacists have become so militant, they have forgotten to be human. That cancer patient passed away not long ago. Her last bit of time was, in part, crying that the pharmacist considered her a drug seeker; how cruel. It’s not the incurable pain patient trying to pull one over on a pharmacist; it’s a small number of people who come into pharmacies with ill intent. Most of the people who come are simply trying to live longer and suffer less. Sometimes I feel as if humanity has been removed from us, and replaced with cold, hard video screens. It feels as if the world no longer has tolerance for those of us unable to keep up. Where now often denied beneficial treatments and medications, because we have become too expensive to keep alive. If that sounds harsh, just imagine how it feels as it happens over and over again to you. In my case, I am not on any controlled medications, so I am lucky to be able to shop around to get the cheapest price I can find, in order to keep access to the very medications that make staying alive possible. It makes getting out of bed without help, and walking down the stairs doable. If I was forced like others to only have my medications filled at one designated pharmacy, I would have to start rationing, if not be completely unable to take some of my medications. There is a massive difference in price amongst all the various pharmacies, because everyone has a pharmacy now. The grocery store, mail order companies, and even Amazon have an online pharmacy now, all setting different prices for the same medications. So many of them are large companies, who leave little to no room for pharmacists to get to know their patients. Yet they make decisions so harsh it will continue to cause unnecessary death. Worse, patients suffer and slowly lose parts of their humanity to humiliation and isolation. People don’t want to hang out with the sick. Some are embarrassed by our illnesses. I’ve personally had my heart broken from that very thing. NO ONE is immune. None of this will change until the government stops creating overreaching laws on complex medical matters. Providers, such as pharmacists, need a reeducation in treating the whole person, not just dishing out pills. It’s a power over life that no one person should be able to control solely. Until this changes, we’re going to continue to see memorialized social media pages for those lost by undertreated or untreated ailments, a large number to suicide. It’s a painful truth, but should really serve as a wake-up call. I know how I feel when thoughts creep in about feeling alone, wishing for the TV movie family that rallies around you. It’s just not the reality which many live with. Chronic pain patients are simply silenced in the face of an inescapable hell. The constant pain, treatments, side effects, missing parts of life. Having to negotiate medications and keep track of various pharmacies and refill dates, along with the near weekly medical appointments, is exhausting. It’s the life of those who cannot be cured. The attempt to regulate health care has led to increased suicides. People have been left feeling as if no one values them, that they are too costly to keep alive. Strangers playing roulette with lives in pharmacies. People are called acceptable losses or collateral damage. No one should be tossed aside, and made to feel unworthy of life itself. We must demand change from our legislators, medical providers, and demand dignity in our pharmacies. No one should draw their last breath, having been made to feel that they’re not worth the money for the medicines needed to keep them alive.

Jenny Coffey

How Limiting Access to Pharmacies Harms Chronic Pain Patients

I want to cover an issue that was born from illicit drugs, but has found a scapegoat in chronic, intractable pain patients. Patients stable in palliative care suddenly become the boss of a drug cartel. New limits on prescription access affecting arguably the sickest citizens among us. This is a unique problem affecting a fraction of those with incurable disorders, but make no mistake, it continues to cost lives. We need doctors making choices for patients, not legislators looking for the quick fix and a fast track to winning the next election. In order to curb opiate use and abuse, in some instances, laws were passed in haste. Federal stupidity in 2016, in the form of a recommendation by the CDC, caused a massive shift in care of the chronically ill. New restrictions on all patients who are prescribed controlled medications, not just those with severe incurables, cost thousands of lives. It’s an example of a good idea gone bad. This overreach born from illicit fentanyl use limits people to only one pharmacy, regardless of the individual patient’s needs or lack of prescription medication coverage. This makes real people choose which medications they can afford to fill, and which medications they will ration, or just do without. Limiting pharmacies has created an unfair financial burden on people most likely living on fixed incomes, with insufficient prescription drug plans. Large companies, like Goodrx, can negotiate prices that often dwarf insurance plans with high premiums, out of pocket expenses, and flat out refusal to cover life-saving medications. We hear all too often how legislators are trying to look out for patients, by putting blanket controls on how people can fill their prescriptions. When a pain patient is prescribed any controlled substance currently, they’re mandated to sign what is called a pain contract. It’s an agreement meant to protect providers and patients, or at least that is the garbage reason used to do it, as it actually causes chronic pain patients to be treated as criminal drug addicts. It micromanages a patient’s care, with no consideration for ailment or individual life situations. Common sense takes a back seat in the face of ill-placed and exaggerated fear. The penalty for violating this contract can, and often does, result in loss of access to medical care and medications. In other words, they fire you from the practice and refuse to see you in the office. Some have even refused to taper, cutting off medication refills, leaving someone to suffer what can only be described as torture. The contracts have a lot of built in restrictions, besides limiting your use of pharmacies to one pharmacy. On the surface, that sounds reasonable, and if the restriction was only on the control medications, maybe it would work better. However, it’s not, and depending on providers, you may simply be stuck between the proverbial rock and a hard place. You could be trading treatment for one illness over another. How do you make such a choice? Not all pharmacies are alike, as they are not equal in what they charge for a given medication. Here in the United States, people have to shop around for their medications. Insurance companies choose what your copay is, in part based on where you fill the script. It truly can become a situation of not enough money, so you skip medication. A harsh reality of how medical care in the United States creates population controls without trying. The reality is rarely kind to those with financial limitations, to accompany their incurable ailment and mounting medical bills. I now have four pharmacies. I only want to have one, but I can’t afford that. I have had to give up on access to medication. This year medications are more expensive, and my list of pharmacies has grown. My care is complex enough without having to deal with four different pharmacies. A list of pharmacists I could never know, and worse, they never get to know me. I really do miss that personalized care that I use to have access to. Being forced to shop this way for life-extending medications is not only awful, it’s dangerous. I used to have one pharmacy, with all my allergies and prescription history known. Heck, the pharmacist knew me not just by name, but by face. The pharmacist would at times warn me if there was a contraindication with one of my medications, especially over the counter medications. Now I have far too many pharmacists. I practically have a football team between the pharmacies. It can be a bear to ensure everything refills correctly. If I have a question I have to try to tell them my medical history and rare diseases that they have never heard of, in less than 60 seconds. My complexity only makes that 100 times worse. It’s awful to depend on someone to get things right when you are introducing a disease that they may not have even heard of. Yes, there have been times when they have said, “I don’t know. I’ve never heard of it.” If not them, who do you find the answers from? The point of trying to prevent doctor shopping, and attempts to fill a prescription fraudulently, has now caused a stage four cancer patient to post videos of how they were denied their prescription, because they dared to try to go to a cheaper pharmacy, or worse, the one that has the medication in stock. Some pharmacists have become so militant, they have forgotten to be human. That cancer patient passed away not long ago. Her last bit of time was, in part, crying that the pharmacist considered her a drug seeker; how cruel. It’s not the incurable pain patient trying to pull one over on a pharmacist; it’s a small number of people who come into pharmacies with ill intent. Most of the people who come are simply trying to live longer and suffer less. Sometimes I feel as if humanity has been removed from us, and replaced with cold, hard video screens. It feels as if the world no longer has tolerance for those of us unable to keep up. Where now often denied beneficial treatments and medications, because we have become too expensive to keep alive. If that sounds harsh, just imagine how it feels as it happens over and over again to you. In my case, I am not on any controlled medications, so I am lucky to be able to shop around to get the cheapest price I can find, in order to keep access to the very medications that make staying alive possible. It makes getting out of bed without help, and walking down the stairs doable. If I was forced like others to only have my medications filled at one designated pharmacy, I would have to start rationing, if not be completely unable to take some of my medications. There is a massive difference in price amongst all the various pharmacies, because everyone has a pharmacy now. The grocery store, mail order companies, and even Amazon have an online pharmacy now, all setting different prices for the same medications. So many of them are large companies, who leave little to no room for pharmacists to get to know their patients. Yet they make decisions so harsh it will continue to cause unnecessary death. Worse, patients suffer and slowly lose parts of their humanity to humiliation and isolation. People don’t want to hang out with the sick. Some are embarrassed by our illnesses. I’ve personally had my heart broken from that very thing. NO ONE is immune. None of this will change until the government stops creating overreaching laws on complex medical matters. Providers, such as pharmacists, need a reeducation in treating the whole person, not just dishing out pills. It’s a power over life that no one person should be able to control solely. Until this changes, we’re going to continue to see memorialized social media pages for those lost by undertreated or untreated ailments, a large number to suicide. It’s a painful truth, but should really serve as a wake-up call. I know how I feel when thoughts creep in about feeling alone, wishing for the TV movie family that rallies around you. It’s just not the reality which many live with. Chronic pain patients are simply silenced in the face of an inescapable hell. The constant pain, treatments, side effects, missing parts of life. Having to negotiate medications and keep track of various pharmacies and refill dates, along with the near weekly medical appointments, is exhausting. It’s the life of those who cannot be cured. The attempt to regulate health care has led to increased suicides. People have been left feeling as if no one values them, that they are too costly to keep alive. Strangers playing roulette with lives in pharmacies. People are called acceptable losses or collateral damage. No one should be tossed aside, and made to feel unworthy of life itself. We must demand change from our legislators, medical providers, and demand dignity in our pharmacies. No one should draw their last breath, having been made to feel that they’re not worth the money for the medicines needed to keep them alive.