Dear Cynics,
I get it -- you’re burnt out from dealing with the seemingly endless parade of drug-seekers and addicts who march through the exam rooms in your Emergency Department. I really don’t blame you. I’m certain I’d struggle with keeping the more acerbic side of my personality in check if I was forced to listen to a relentless barrage of demands for narcotic pain medication from people too stupid or too stoned to realize how absurd their stories sound. It must be hard to not get cynical after seeing the same faces give the same thinly-veiled reasons for why they need opioids week in and week out.
But even if 95 percent of the people who come to you with complaints of severe pain are just hoping to score their next fix, that doesn’t give you the right to treat the five percent of us who really are dealing with unrelenting pain like shit.
Yes, Virginia, there really is such a thing a chronic pain. Although that description has become so associated with drug-seekers that most ER staff can’t say it without rolling their eyes, some forms of pain -- most notably central pain -- truly are relentless. And if you bothered to spend a few minutes talking to me about my medical history and what I’m going through instead of writing me off as soon as you see “pain” listed as one of my chief complaints, you might be able to understand that.
No matter how bad I‘m hurting, I make every effort to be a patient patient and to treat you with respect when I have no choice but to visit your ER. Is it really asking too much to expect you to extend that same courtesy to me?
The last thing in the world I want to do -- except keep enduring the agony I’m in -- is to ask for your help in getting the pain back down to a level where I can hang on for a little while longer. Coming to the ER means investing hours of time, risking ridicule and scorn because you prejudicially decide that I’m either faking or a junkie, and, after all that, getting sent home in as much pain as I started with but even more frustrated and desperate because you‘ve denied me treatment and taken away my only hope for relief.
Although you may not believe it, I hate the drug-seekers as much or more than you do. Prescription drug addicts are the reason I have such a hard time finding doctors willing to treat me, and am forced to sign 15 page contracts that leave me with no rights at all but allow the doctor to terminate treatment at any time for any reason. The junkies are the reason that even after five years of total compliance (i.e. no early refill requests, no “lost” prescriptions, and no filling prescriptions anywhere else), my pharmacist still treats me with suspicion. And as I’ve explained here, they’re the reason why you’ll only see me when I am at rock-bottom and utterly desperate.
So the next time your triage nurse hands you a chart for someone in chronic pain, try to put your addict burnout aside -- or at least on hold. There’s a chance that your next patient may be someone like me whose pain is physical, real, and overwhelming, and who legitimately needs something more than "Tylenol…Number Three.” If you treat me with respect, and listen to what I have to say with an open mind instead of through a filter of inherent distrust, I promise I’ll do the same.
Showing posts with label Pain. Show all posts
Showing posts with label Pain. Show all posts
Friday, June 04, 2010
Friday, May 28, 2010
Traitors!
I am officially charging both of my arms and my right leg with High Treason.
As sources of unrelenting pain (left arm and right leg) and agonizing bouts of spasticity (right arm), they are aiding and abetting my sworn enemy, spinal cord damage, and causing grievous harm to their Sovereign. In addition, my right arm and leg have exacerbated their traitorous behavior by refusing to obey my direct orders.
These blatant acts of disloyalty will not be tolerated.
Ideas on how to deal with the traitors are welcome.
The traditional punishment for the crime of High Treason was drawing and quartering. But I can’t see making my (mostly) innocent internal organs pay the price for the misdeeds of my limbs by burning them, and since I already feel like I’ve been cut into quarters…Well, you get the picture.
As sources of unrelenting pain (left arm and right leg) and agonizing bouts of spasticity (right arm), they are aiding and abetting my sworn enemy, spinal cord damage, and causing grievous harm to their Sovereign. In addition, my right arm and leg have exacerbated their traitorous behavior by refusing to obey my direct orders.
These blatant acts of disloyalty will not be tolerated.
Ideas on how to deal with the traitors are welcome.
The traditional punishment for the crime of High Treason was drawing and quartering. But I can’t see making my (mostly) innocent internal organs pay the price for the misdeeds of my limbs by burning them, and since I already feel like I’ve been cut into quarters…Well, you get the picture.
Saturday, May 22, 2010
Let’s Talk About Pain, Baby
This post is dedicated to dejerine, who has taught me more about pain and pain management in a year than the medical profession has in 30, and whose humor and keen observations about the lack of real understanding about central pain make me think, laugh and cry, often all at the same time.
____________________________________________
There’s an old saying, “You don’t know what you don’t know.“
After living with chronic pain for most of my life, I’m can say with certainty that doctors and researchers have no idea that they’re absolutely clueless about pain and pain management. The reason behind the problem? The doctors and scientists we rely on for help do a terrible job of communicating with us about the problem of pain and the solutions.
Let me illustrate with my story.
In scientific terms, I suffer from two very different kinds of chronic pain: nociceptive and central. Nociceptive pain is the typical kind of pain people feel when their organs, soft tissues, or bones are damaged. Central pain, in the most simplistic terms, occurs when nerves in the brain and spinal cord are damaged. These injured nerves amplify their signals (and drag their healthy neighbors along for the ride), and the brain interprets this barrage of amplified nerve signals as a variety of obnoxious sensations: cold, metallic burning (dysesthesia); stabbing (lancinating); pins and needles; electrical shocks; pressure/swelling; and even itching, to name a few. Spasticity (involuntary muscle spasms and rigidity) are also a form of central pain, although I think of it as a separate symptom.
I was able to cope with my pain (both kinds) and spasticity on my own for almost 20 years. When I finally reached the point at which I needed help, I had no idea how to tell my doctors about how I hurt in “science speak”. But I could do what I thought was the next best thing -- describe exactly what I was feeling. I (naively, as it turned out) assumed that the specialists at the pain management clinic would both want and need to know, in as much detail as possible, what kinds of pain I had, where it hurt, how bad it hurt, how often each kind of pain occurred, how long each type of pain lasted, what triggered the pain (if anything), and finally, what relieved the pain (if anything). Logic dictated that the better my doctors understood what I meant when I said I was in pain, the better they’d be able to come up with treatments that would help me manage it.
The clinic’s intake questionnaire seemed like the perfect opportunity for me to provide the specialists with a record of how pain affected my body and my life. There were page after page filled with questions about the ways in which pain encroached on my ability to sleep, eat, work, and the other activities of every day life. But to my great surprise, there were only a handful of questions about the pain itself. The best opportunity I had to describe the types of pain I was dealing with was rough outline of the front and back of the body.
Although the instructions said only to mark where I felt pain, I went a step beyond by mapping both where I hurt and the kind of pain that affected each area of my body. It took me the better part of an hour to fill in the illustration and create a key that explained what type of pain was represented by each pattern: polka dots represented problems with spasticity and tone even though I already had a Baclofen pump. Left-leaning hash marks indicated (I thought rather cleverly and appropriately) the butcher knife that would randomly plunge into my left shoulder blade and other lancinating pains. Jagged Zs showed where electrical shocks raced through me, while tear drops revealed the acid that pooled just under the skin of my left arm and right leg when anything touched them -- even a tear drop or a puff of air would set me to burn. And a series of squiggles marked the nociceptive pain that plagued me, including the persistent ache in the middle of my back where the side-to-side and front-to-back curvatures of my spine intersected.
The finished product was the most accurate representation of my pain that ever existed. It was also a mess -- there were so many different patterns overlapping in areas like the left shoulder and arm that the drawing appeared to be colored black. (To this day, I can’t help but wish I had taken a set of colored pencils with me that day -- color coding would have been so much easier to distinguish than multiple designs.)
Only one question remained, and I thought the most difficult part of the questionnaire was behind me. Then I read the question.
“On a scale of one to ten, with ten being the worst, how bad is your pain on a typical day?”
What?!? You have to be kidding. I had no idea how to answer that question.
When you’re in pain, there’s no such thing as a “typical” day. Anything and everything can trigger a flare up -- the wrong clothes, lack of sleep, stress, changes in temperature and/or barometric pressure, having scrambled eggs instead of sunny side up. (I‘m only half-kidding about the eggs. Blending the whites and the yolks with a little water to make them fluffy as they cook has triggered stabbing pains in my shoulder on more than one occasion.) Should I consider today typical, or should I find the average of the highest scores from the last three? seven? ten? days and write that number down?
“On a scale of one to ten, with ten being the worst, how bad is your pain on a typical day?” Reading it again only made it worse.
At any given time, I’m under siege from multiple types of pain. Which of them am I supposed to measure against that scale -- the worst one? Or should I take the score for each kind of pain I have and come up with an average? Should the average be derived from the “typical” score for all the pains or the highest flare up for each type of pain? Maybe I should give one score for the nerve pain, another for the “regular” kinds of pain, and a third for the spasticity.
I sat and stared at the question for almost five minutes, trying to figure out the answer. Nothing came, so I left it blank.
I spent an hour and fifteen minutes on the pain questionnaire. The pain management specialist never looked at it once -- well, at least not while I was with him. We talked about the tumor, the surgeries and the radiation that caused the damage to my spinal cord. We talked about how the pain affected my sleep and my work. We talked about my expectations for pain management. We talked about how well my Baclofen pump was working.
The only thing we didn’t talk about, except in the most general terms, was the pain.
It’s been the same with every doctor since. Specialist or general practitioner, they all behave as though my pain is a single, homogenous entity. They act as though I can adequately describe how pain affects my life by assigning it a numerical score at a random moment in time. And they prescribe and evaluate the effectiveness of treatments without ever understanding the specifics of the problem.
And we let them.
If we, the people who hurt, ever hope to get the relief we need, we must change the way we talk about pain, and force the doctors and researchers to change, too. Instead of conversations about “the pain”, we need to talk about the burning, the stabbing, the spasms, the pins and needles, and the pressure. We need to insist that our doctors stop talking in general about pain and start talking specifically about the kinds of pain we have and how well -- or poorly -- the treatments they’ve prescribed affect each one. And we need to challenge the scientists who study new treatments to use the most specific definitions of pain possible when they perform their research and evaluate the results.
So let’s talk about pain, baby, just not about “the pain.” They don't know what they don't know, so it's our job to tell them.
____________________________________________
There’s an old saying, “You don’t know what you don’t know.“
After living with chronic pain for most of my life, I’m can say with certainty that doctors and researchers have no idea that they’re absolutely clueless about pain and pain management. The reason behind the problem? The doctors and scientists we rely on for help do a terrible job of communicating with us about the problem of pain and the solutions.
Let me illustrate with my story.
In scientific terms, I suffer from two very different kinds of chronic pain: nociceptive and central. Nociceptive pain is the typical kind of pain people feel when their organs, soft tissues, or bones are damaged. Central pain, in the most simplistic terms, occurs when nerves in the brain and spinal cord are damaged. These injured nerves amplify their signals (and drag their healthy neighbors along for the ride), and the brain interprets this barrage of amplified nerve signals as a variety of obnoxious sensations: cold, metallic burning (dysesthesia); stabbing (lancinating); pins and needles; electrical shocks; pressure/swelling; and even itching, to name a few. Spasticity (involuntary muscle spasms and rigidity) are also a form of central pain, although I think of it as a separate symptom.
I was able to cope with my pain (both kinds) and spasticity on my own for almost 20 years. When I finally reached the point at which I needed help, I had no idea how to tell my doctors about how I hurt in “science speak”. But I could do what I thought was the next best thing -- describe exactly what I was feeling. I (naively, as it turned out) assumed that the specialists at the pain management clinic would both want and need to know, in as much detail as possible, what kinds of pain I had, where it hurt, how bad it hurt, how often each kind of pain occurred, how long each type of pain lasted, what triggered the pain (if anything), and finally, what relieved the pain (if anything). Logic dictated that the better my doctors understood what I meant when I said I was in pain, the better they’d be able to come up with treatments that would help me manage it.
The clinic’s intake questionnaire seemed like the perfect opportunity for me to provide the specialists with a record of how pain affected my body and my life. There were page after page filled with questions about the ways in which pain encroached on my ability to sleep, eat, work, and the other activities of every day life. But to my great surprise, there were only a handful of questions about the pain itself. The best opportunity I had to describe the types of pain I was dealing with was rough outline of the front and back of the body.
Although the instructions said only to mark where I felt pain, I went a step beyond by mapping both where I hurt and the kind of pain that affected each area of my body. It took me the better part of an hour to fill in the illustration and create a key that explained what type of pain was represented by each pattern: polka dots represented problems with spasticity and tone even though I already had a Baclofen pump. Left-leaning hash marks indicated (I thought rather cleverly and appropriately) the butcher knife that would randomly plunge into my left shoulder blade and other lancinating pains. Jagged Zs showed where electrical shocks raced through me, while tear drops revealed the acid that pooled just under the skin of my left arm and right leg when anything touched them -- even a tear drop or a puff of air would set me to burn. And a series of squiggles marked the nociceptive pain that plagued me, including the persistent ache in the middle of my back where the side-to-side and front-to-back curvatures of my spine intersected.
The finished product was the most accurate representation of my pain that ever existed. It was also a mess -- there were so many different patterns overlapping in areas like the left shoulder and arm that the drawing appeared to be colored black. (To this day, I can’t help but wish I had taken a set of colored pencils with me that day -- color coding would have been so much easier to distinguish than multiple designs.)
Only one question remained, and I thought the most difficult part of the questionnaire was behind me. Then I read the question.
“On a scale of one to ten, with ten being the worst, how bad is your pain on a typical day?”
What?!? You have to be kidding. I had no idea how to answer that question.
When you’re in pain, there’s no such thing as a “typical” day. Anything and everything can trigger a flare up -- the wrong clothes, lack of sleep, stress, changes in temperature and/or barometric pressure, having scrambled eggs instead of sunny side up. (I‘m only half-kidding about the eggs. Blending the whites and the yolks with a little water to make them fluffy as they cook has triggered stabbing pains in my shoulder on more than one occasion.) Should I consider today typical, or should I find the average of the highest scores from the last three? seven? ten? days and write that number down?
“On a scale of one to ten, with ten being the worst, how bad is your pain on a typical day?” Reading it again only made it worse.
At any given time, I’m under siege from multiple types of pain. Which of them am I supposed to measure against that scale -- the worst one? Or should I take the score for each kind of pain I have and come up with an average? Should the average be derived from the “typical” score for all the pains or the highest flare up for each type of pain? Maybe I should give one score for the nerve pain, another for the “regular” kinds of pain, and a third for the spasticity.
I sat and stared at the question for almost five minutes, trying to figure out the answer. Nothing came, so I left it blank.
I spent an hour and fifteen minutes on the pain questionnaire. The pain management specialist never looked at it once -- well, at least not while I was with him. We talked about the tumor, the surgeries and the radiation that caused the damage to my spinal cord. We talked about how the pain affected my sleep and my work. We talked about my expectations for pain management. We talked about how well my Baclofen pump was working.
The only thing we didn’t talk about, except in the most general terms, was the pain.
It’s been the same with every doctor since. Specialist or general practitioner, they all behave as though my pain is a single, homogenous entity. They act as though I can adequately describe how pain affects my life by assigning it a numerical score at a random moment in time. And they prescribe and evaluate the effectiveness of treatments without ever understanding the specifics of the problem.
And we let them.
If we, the people who hurt, ever hope to get the relief we need, we must change the way we talk about pain, and force the doctors and researchers to change, too. Instead of conversations about “the pain”, we need to talk about the burning, the stabbing, the spasms, the pins and needles, and the pressure. We need to insist that our doctors stop talking in general about pain and start talking specifically about the kinds of pain we have and how well -- or poorly -- the treatments they’ve prescribed affect each one. And we need to challenge the scientists who study new treatments to use the most specific definitions of pain possible when they perform their research and evaluate the results.
So let’s talk about pain, baby, just not about “the pain.” They don't know what they don't know, so it's our job to tell them.
Sunday, May 16, 2010
ED Visits Gone Wrong - Georgetown Edition
I’ve mentioned before that I follow a lot of medical blogs, more than a few of which are written by folks who work in the ED (Emergency Department -- not Emergency Room, thank you very much). After reading hundreds of tales in which doctors and nurses complain about the problematic patients they’ve encountered over the years, I’ve decided that the blogosphere is long overdue for stories about ED nightmares told from the patients’ point of view.
This is one of those stories.
_______________________________________________
I was a mess, physically, emotionally, mentally.
A month before, I’d started taking an anti-seizure medication with the hope that it would be the one that finally gave me some relief from the unrelenting central pain I’d endured for the last 25 years . The experiment was a disaster. Not only did the drug do nothing to quiet the pain, I suffered almost every severe side effect possible: nausea and loss of appetite, problems with short-term memory and concentration, insomnia, depression, dramatic weight loss, anxiety, exhaustion, tinnitus, and problems with my vision. I couldn’t eat, sleep, focus, or stop crying, nor could I get a single moment’s relief from the lancinating and electrical pain tearing at my left shoulder and right leg.
I took the medication for 21 days in the hope that my body would adjust and the miserable side-effects would diminish, but that didn’t happen. Magnified through the twin lenses of total exhaustion and unbearable pain, the symptoms actually got worse with each passing day.
When I couldn’t take a minute more, I called my pain clinic for help. My doctor was out, so I ended up talking to a resident who didn’t know me. I patiently explained that I’d been working with Dr. X to find a protocol that managed my central pain, why I had taken myself off of the latest med, and asked if they could see me sooner than my next scheduled appointment (still two long weeks away) or prescribe something to help me cope with the pain until then. The resident refused to do either, telling me that they “had to find the source of my pain before they could treat it.” My response -- that the reason I was in pain was because a large tumor had been cut out of my central nervous system and took a significant chunk of my spinal cord along with it -- failed to impress him, and he continued to refuse to help. When I tearfully asked how I was supposed to make it until my appointment, I was told to go to my local ED if my pain got “really bad.” And then he hung up on me.
As you might imagine, this did little to help alleviate my depression.
Four days later, I was still crying my eyes out and still in agony. I’d not left the master suite in our condo for close to a month, had no pain meds on hand, and saw very little hope for making it another ten days until my appointment with the pain clinic. After listening to an impassioned plea from the HipHubby to seek some help, I reluctantly agreed to do as the pain clinic instructed and go to the emergency department at Georgetown Hospital. Great idea in theory but a nightmare in real life.
The HipHubby and I arrived at the ED at 6:30 pm, and sat in the waiting room for the next four hours. When I finally got called back at 10:30 pm, the resident on duty that night all but ignored my explanation that I was there because I felt I was losing my battles against chronic pain and depression and hoped to get enough pain relief to get a few hours sleep and talk to a psych resident about starting antidepressants.
Instead, he became fixated on the fact that I was running a low-grade fever, and decided that tracking down and treating the cause of it was more important than dealing with my primary complaints. Telling this resident that my general practitioner had already run a full battery of diagnostic tests during the last month that ruled out the usual types of infections -- urinary and lung -- didn’t dissuade him of his resolve. As soon as his order to start an IV was completed, off I went, without the benefit of any pain medication, to have chest x-rays taken and urine samples collected. He even ordered blood cultures, in addition to the standard diagnostic tests like a complete blood count (CBC), to rule out sepsis. Only after another four hours had passed and the tests came back negative did he finally get around to giving me some Demerol for the pain and request a consult from the psych department.
It was 3 am -- eight and a half hours after I arrived in the ED -- before the third year resident from the psych department appeared at my bedside. I shared with her my terrible experience with the most recent pain drug, but let her know there was more than that fueling my depression. Dr. X, I told her, had promised me that he had “lots” of things to try that could help with my pain, but I was still without any relief after seeing him at the pain clinic for more than a year. I made certain she understood that Dr. X was not the first to fail to deliver on his promises -- he was just the most recent. And I confided in her that I felt adrift and alone, which was made all the worse when the pain clinic doctor whom I’d begged for help earlier today refused. I was emotionally exhausted because doctors would give me their word that they’d help me, and then renege on their promises.
The psych resident listened with interest and, when I’d finished, assured me with a warm smile and the “I care about you, really I do” pat on the hand that there’d be no problem getting me started on some anti-depressants before I left. But before she could write that prescription, I would need to submit to a complete psychiatric evaluation. I agreed, and with the Demerol finally easing some of the physical pain away, felt for the first time in weeks that I might be okay after all.
The psych exam took almost two full hours to complete. During that time, she explored my medical, social, and family histories. She assessed my cognitive functions and perceptions. And she evaluated my ability to care for myself and navigate the ins and outs of daily life, which included interviewing the HipHubby about my daily routines.
But the majority of the resident’s inquiries focused on the coping mechanisms I use and my ability to “appropriately” express my emotions. The latter is always tricky terrain to navigate because it’s so subjective -- doctors and I have been known to have very different opinions about what constitutes a suitable reaction to certain situations. For example, I think it’s perfectly natural to respond to the suggestion that I pursue in-patient psychiatric care with a sharp, succinct, and immediate “Fuck no!” Doctors, however, seem to disagree, and have even made a permanent note in my chart about how strongly they disapprove of that reaction.
Fortunately, there were no such differences of opinion that night, and shortly after 5 am the psych resident announced she was going to call her attending to ask about which antidepressant she should prescribe. It felt as though my release from the emotional prison in which I was being held was imminent.
It didn’t happen. It took the attending psychiatrist less than two minutes to decide that prescribing antidepressants and referring me for outpatient care would be inappropriate. If I wished, he said, he would admit me to their psych unit, but otherwise they would do nothing for me.
I was devastated that the same problem that had brought me to seek help that night had just happened again -- a doctor had promised to help me, and then failed to deliver on that promise. The psych resident wouldn’t acknowledge that she’d just become she vowed to help me fix, and refused to call her attending back to appeal his decision. She simply said she’d done all she could do, and walked away.
After almost twelve long hours in the ED, I’d had enough. I took out my IV and, without waiting to see the ED resident who‘d taken charge on my care, we left. No one seemed to notice -- we never got a second glance from any of the ED staff as I rolled out the door, nor did the hospital attempt any follow-up to my visit. It should go without saying that my experiences that night made me more than a little reluctant to ever set foot in an emergency department again.
This is one of those stories.
_______________________________________________
I was a mess, physically, emotionally, mentally.
A month before, I’d started taking an anti-seizure medication with the hope that it would be the one that finally gave me some relief from the unrelenting central pain I’d endured for the last 25 years . The experiment was a disaster. Not only did the drug do nothing to quiet the pain, I suffered almost every severe side effect possible: nausea and loss of appetite, problems with short-term memory and concentration, insomnia, depression, dramatic weight loss, anxiety, exhaustion, tinnitus, and problems with my vision. I couldn’t eat, sleep, focus, or stop crying, nor could I get a single moment’s relief from the lancinating and electrical pain tearing at my left shoulder and right leg.
I took the medication for 21 days in the hope that my body would adjust and the miserable side-effects would diminish, but that didn’t happen. Magnified through the twin lenses of total exhaustion and unbearable pain, the symptoms actually got worse with each passing day.
When I couldn’t take a minute more, I called my pain clinic for help. My doctor was out, so I ended up talking to a resident who didn’t know me. I patiently explained that I’d been working with Dr. X to find a protocol that managed my central pain, why I had taken myself off of the latest med, and asked if they could see me sooner than my next scheduled appointment (still two long weeks away) or prescribe something to help me cope with the pain until then. The resident refused to do either, telling me that they “had to find the source of my pain before they could treat it.” My response -- that the reason I was in pain was because a large tumor had been cut out of my central nervous system and took a significant chunk of my spinal cord along with it -- failed to impress him, and he continued to refuse to help. When I tearfully asked how I was supposed to make it until my appointment, I was told to go to my local ED if my pain got “really bad.” And then he hung up on me.
As you might imagine, this did little to help alleviate my depression.
Four days later, I was still crying my eyes out and still in agony. I’d not left the master suite in our condo for close to a month, had no pain meds on hand, and saw very little hope for making it another ten days until my appointment with the pain clinic. After listening to an impassioned plea from the HipHubby to seek some help, I reluctantly agreed to do as the pain clinic instructed and go to the emergency department at Georgetown Hospital. Great idea in theory but a nightmare in real life.
The HipHubby and I arrived at the ED at 6:30 pm, and sat in the waiting room for the next four hours. When I finally got called back at 10:30 pm, the resident on duty that night all but ignored my explanation that I was there because I felt I was losing my battles against chronic pain and depression and hoped to get enough pain relief to get a few hours sleep and talk to a psych resident about starting antidepressants.
Instead, he became fixated on the fact that I was running a low-grade fever, and decided that tracking down and treating the cause of it was more important than dealing with my primary complaints. Telling this resident that my general practitioner had already run a full battery of diagnostic tests during the last month that ruled out the usual types of infections -- urinary and lung -- didn’t dissuade him of his resolve. As soon as his order to start an IV was completed, off I went, without the benefit of any pain medication, to have chest x-rays taken and urine samples collected. He even ordered blood cultures, in addition to the standard diagnostic tests like a complete blood count (CBC), to rule out sepsis. Only after another four hours had passed and the tests came back negative did he finally get around to giving me some Demerol for the pain and request a consult from the psych department.
It was 3 am -- eight and a half hours after I arrived in the ED -- before the third year resident from the psych department appeared at my bedside. I shared with her my terrible experience with the most recent pain drug, but let her know there was more than that fueling my depression. Dr. X, I told her, had promised me that he had “lots” of things to try that could help with my pain, but I was still without any relief after seeing him at the pain clinic for more than a year. I made certain she understood that Dr. X was not the first to fail to deliver on his promises -- he was just the most recent. And I confided in her that I felt adrift and alone, which was made all the worse when the pain clinic doctor whom I’d begged for help earlier today refused. I was emotionally exhausted because doctors would give me their word that they’d help me, and then renege on their promises.
The psych resident listened with interest and, when I’d finished, assured me with a warm smile and the “I care about you, really I do” pat on the hand that there’d be no problem getting me started on some anti-depressants before I left. But before she could write that prescription, I would need to submit to a complete psychiatric evaluation. I agreed, and with the Demerol finally easing some of the physical pain away, felt for the first time in weeks that I might be okay after all.
The psych exam took almost two full hours to complete. During that time, she explored my medical, social, and family histories. She assessed my cognitive functions and perceptions. And she evaluated my ability to care for myself and navigate the ins and outs of daily life, which included interviewing the HipHubby about my daily routines.
But the majority of the resident’s inquiries focused on the coping mechanisms I use and my ability to “appropriately” express my emotions. The latter is always tricky terrain to navigate because it’s so subjective -- doctors and I have been known to have very different opinions about what constitutes a suitable reaction to certain situations. For example, I think it’s perfectly natural to respond to the suggestion that I pursue in-patient psychiatric care with a sharp, succinct, and immediate “Fuck no!” Doctors, however, seem to disagree, and have even made a permanent note in my chart about how strongly they disapprove of that reaction.
Fortunately, there were no such differences of opinion that night, and shortly after 5 am the psych resident announced she was going to call her attending to ask about which antidepressant she should prescribe. It felt as though my release from the emotional prison in which I was being held was imminent.
It didn’t happen. It took the attending psychiatrist less than two minutes to decide that prescribing antidepressants and referring me for outpatient care would be inappropriate. If I wished, he said, he would admit me to their psych unit, but otherwise they would do nothing for me.
I was devastated that the same problem that had brought me to seek help that night had just happened again -- a doctor had promised to help me, and then failed to deliver on that promise. The psych resident wouldn’t acknowledge that she’d just become she vowed to help me fix, and refused to call her attending back to appeal his decision. She simply said she’d done all she could do, and walked away.
After almost twelve long hours in the ED, I’d had enough. I took out my IV and, without waiting to see the ED resident who‘d taken charge on my care, we left. No one seemed to notice -- we never got a second glance from any of the ED staff as I rolled out the door, nor did the hospital attempt any follow-up to my visit. It should go without saying that my experiences that night made me more than a little reluctant to ever set foot in an emergency department again.
Thursday, May 06, 2010
It’s All In Your Head
It seems that just about every one I know who has chronic pain or a condition that’s not immediately evident to a first year med student with a copy of Grey’s Anatomy has been sent off by one doctor or another to see a psychiatrist. The last words the patient hears before being handed the referral to the MD’s shrink of choice: “It’s all in your head.”
Not literally, of course. What the doctors actually say to their patients is, “I was unable to find anything wrong.” Or “There’s no clinical evidence of disease.” Or the worst one of all, “You have a condition called somatization disorder/Briquet’s syndrome.” Whatever the words that are used, the message the patient hears is clear -- I don’t believe you. You’re making it all up. You’re crazy.
Until you -- or your mother, son, husband -- have heard these words firsthand, you can’t possibly understand how devastating they are.
I was thirteen the first time a doctor told me that my physical problems were psychosomatic. During a weekend trip to Toronto the year before, I developed a stiff neck that was so that I was unable to turn my head at all, and so painful that I had to sleep sitting up. At first, my Mom thought it was the result of tramping around the city during a late season blizzard, and that it would resolve itself with the aid of time and a good heating pad. But when I was no better after three weeks, she took me to see an orthopedic surgeon. Dr. Ortho prescribed muscle relaxers and over-the-door traction but was unable to find the reason my neck muscles were so tight. (He did, however, diagnose me with both scoliosis and hemihypertrophy, the latter probably being the cause of the former.)
After about six weeks of treatment, the stiff neck resolved itself. But as soon as it did, it was replaced with a new set of problems: malaise, nausea/loss of appetite, and vomiting that resulted in dangerously rapid weight loss (30 percent of my body weight in less than three months). Close to a dozen consultations with my pediatrician, internists, neurologists, neurosurgeons, and a gastroenterologist turned up nothing that would explain why I was throwing up every day, couldn’t eat, and had barely enough energy to drag myself to junior high every day. The last doctor we saw told my parents in no uncertain terms that he believed my problems were mental, not physical, and recommended that they take me to a psychiatrist.
I wasn’t in the room when the doctor gave my parents his assessment, but that didn’t make it any less painful. Being sent to a psychiatrist meant the doctors thought I was crazy or a liar (or both). It meant that no one believed me (except my Mom, who never wavered from her insistence that there was a physical cause for my misery). It meant that my Mom and I were now on our own.
Even though I wasn’t trying to lose weight, the psychiatrist, who I’ll call Dr. Ahab, diagnosed me with anorexia nervosa. He put me on a high dose of Mellaril (a drug used to treat schizophrenia, a severe loss of contact with reality), and subjected me to weekly discussions about why I feared growing up and becoming a woman (I didn’t). I was so physically sick that I was hospitalized for dehydration four different times. At one point, Dr. Ahab tried unsuccessfully to convince my parents that the combination of outpatient therapy and antipsychotic medication was no longer enough, so I should be admitted to an inpatient psych hospital for children as soon as I was medically stable.
The message was hammered home: your body may be sick, but the problem is all in your head. Inpatient treatment meant the doctor didn’t just think I was making things up, he thought I was crazy with a capital C.
That was one of the lowest points in my life. Word got out at my school that I had been sent to a shrink and almost “put away” because I was faking my illness. I was relentlessly bullied by some of my classmates, and singled out and embarrassed by my PE teacher. And although my body temporarily healed itself during that time, my spirit became progressively more wounded. A year and a half later, Dr. Ahab finally decided I was ready to be released from his treatment. But by that time, the damage was done.
I enjoyed six trouble-free, psychiatrist-free months before I lost the use of my hands. At first, I noticed that it was getting harder to play my viola because I couldn’t keep my fingers in the right place on the fingerboard or hold the bow correctly. Within a month, both hands were curled into fists and I was using my wrists to open doors and lift food and beverages to my mouth (I ate a lot of hot dogs). And sure enough, when I showed my parents how bad things had gotten, my Dad whisked me straight away to a new psychiatrist, who handed me a pencil and paper and told me to draw the objects she’d posted on her wall.
My first thought was, “I’m so screwed.“ I couldn’t extend my fingers from where they curled into my palms, and my hands were so weak I had no grip. Even if I did manage to hold the pencil tight enough to draw, the lack of control I had over my hands was sure to produce shapes that would make it appear as though I had no grasp on reality. I was sure before I started that this was game over, and I’d be heading straight to the psych hospital after this appointment.
Thank goodness this wasn’t Dr. Ahab, or even someone who shared his mindset. This new psychiatrist recognized that there really was something physically wrong, and referred me to a new neurologist (number six, if anyone‘s counting). After two more months of doctors and diagnostic tests (including an electromyogram and myelogram), I was diagnosed with an astrocytoma, grade III (anaplastic astrocytoma) , of the cervical and upper thoracic spinal cord, my Mom and I were finally able to prove that all of problems were physical, not psychiatric, in nature. As strange as it sounds, hearing that I had cancer was, for a brief moment in time, a huge relief because it was real.
This experience changed how I thought about doctors. Primary care physicians and specialists are viewed with suspicion. I no longer believed that they will listen to or really understand what I told them, or that they would make every effort possible to figure out what was wrong with me. Psychiatrists and other mental health professionals are adversaries who are not to be trusted.
I wish I could tell you that my experiences in the 30 plus years that have passed since then have convinced me otherwise. I wish I could tell you that I was the only one who’s experienced this. And I really wish I could tell you that I believed no one would ever tell me again that something I know to be real isn’t.
I may sound cynical, but I believe that's probably typical of anyone who's been repeatedly told he/she's crazy. But based on my experiences, the best I can hope for is to have what I do right now -- something that I didn’t have when this first happened: other people who been there and done that, and who understand why I get so angry when a doctor even suggests that my pain, or anything else I’m experiencing, is all in my head.
Not literally, of course. What the doctors actually say to their patients is, “I was unable to find anything wrong.” Or “There’s no clinical evidence of disease.” Or the worst one of all, “You have a condition called somatization disorder/Briquet’s syndrome.” Whatever the words that are used, the message the patient hears is clear -- I don’t believe you. You’re making it all up. You’re crazy.
Until you -- or your mother, son, husband -- have heard these words firsthand, you can’t possibly understand how devastating they are.
I was thirteen the first time a doctor told me that my physical problems were psychosomatic. During a weekend trip to Toronto the year before, I developed a stiff neck that was so that I was unable to turn my head at all, and so painful that I had to sleep sitting up. At first, my Mom thought it was the result of tramping around the city during a late season blizzard, and that it would resolve itself with the aid of time and a good heating pad. But when I was no better after three weeks, she took me to see an orthopedic surgeon. Dr. Ortho prescribed muscle relaxers and over-the-door traction but was unable to find the reason my neck muscles were so tight. (He did, however, diagnose me with both scoliosis and hemihypertrophy, the latter probably being the cause of the former.)
After about six weeks of treatment, the stiff neck resolved itself. But as soon as it did, it was replaced with a new set of problems: malaise, nausea/loss of appetite, and vomiting that resulted in dangerously rapid weight loss (30 percent of my body weight in less than three months). Close to a dozen consultations with my pediatrician, internists, neurologists, neurosurgeons, and a gastroenterologist turned up nothing that would explain why I was throwing up every day, couldn’t eat, and had barely enough energy to drag myself to junior high every day. The last doctor we saw told my parents in no uncertain terms that he believed my problems were mental, not physical, and recommended that they take me to a psychiatrist.
I wasn’t in the room when the doctor gave my parents his assessment, but that didn’t make it any less painful. Being sent to a psychiatrist meant the doctors thought I was crazy or a liar (or both). It meant that no one believed me (except my Mom, who never wavered from her insistence that there was a physical cause for my misery). It meant that my Mom and I were now on our own.
Even though I wasn’t trying to lose weight, the psychiatrist, who I’ll call Dr. Ahab, diagnosed me with anorexia nervosa. He put me on a high dose of Mellaril (a drug used to treat schizophrenia, a severe loss of contact with reality), and subjected me to weekly discussions about why I feared growing up and becoming a woman (I didn’t). I was so physically sick that I was hospitalized for dehydration four different times. At one point, Dr. Ahab tried unsuccessfully to convince my parents that the combination of outpatient therapy and antipsychotic medication was no longer enough, so I should be admitted to an inpatient psych hospital for children as soon as I was medically stable.
The message was hammered home: your body may be sick, but the problem is all in your head. Inpatient treatment meant the doctor didn’t just think I was making things up, he thought I was crazy with a capital C.
That was one of the lowest points in my life. Word got out at my school that I had been sent to a shrink and almost “put away” because I was faking my illness. I was relentlessly bullied by some of my classmates, and singled out and embarrassed by my PE teacher. And although my body temporarily healed itself during that time, my spirit became progressively more wounded. A year and a half later, Dr. Ahab finally decided I was ready to be released from his treatment. But by that time, the damage was done.
I enjoyed six trouble-free, psychiatrist-free months before I lost the use of my hands. At first, I noticed that it was getting harder to play my viola because I couldn’t keep my fingers in the right place on the fingerboard or hold the bow correctly. Within a month, both hands were curled into fists and I was using my wrists to open doors and lift food and beverages to my mouth (I ate a lot of hot dogs). And sure enough, when I showed my parents how bad things had gotten, my Dad whisked me straight away to a new psychiatrist, who handed me a pencil and paper and told me to draw the objects she’d posted on her wall.
My first thought was, “I’m so screwed.“ I couldn’t extend my fingers from where they curled into my palms, and my hands were so weak I had no grip. Even if I did manage to hold the pencil tight enough to draw, the lack of control I had over my hands was sure to produce shapes that would make it appear as though I had no grasp on reality. I was sure before I started that this was game over, and I’d be heading straight to the psych hospital after this appointment.
Thank goodness this wasn’t Dr. Ahab, or even someone who shared his mindset. This new psychiatrist recognized that there really was something physically wrong, and referred me to a new neurologist (number six, if anyone‘s counting). After two more months of doctors and diagnostic tests (including an electromyogram and myelogram), I was diagnosed with an astrocytoma, grade III (anaplastic astrocytoma) , of the cervical and upper thoracic spinal cord, my Mom and I were finally able to prove that all of problems were physical, not psychiatric, in nature. As strange as it sounds, hearing that I had cancer was, for a brief moment in time, a huge relief because it was real.
This experience changed how I thought about doctors. Primary care physicians and specialists are viewed with suspicion. I no longer believed that they will listen to or really understand what I told them, or that they would make every effort possible to figure out what was wrong with me. Psychiatrists and other mental health professionals are adversaries who are not to be trusted.
I wish I could tell you that my experiences in the 30 plus years that have passed since then have convinced me otherwise. I wish I could tell you that I was the only one who’s experienced this. And I really wish I could tell you that I believed no one would ever tell me again that something I know to be real isn’t.
I may sound cynical, but I believe that's probably typical of anyone who's been repeatedly told he/she's crazy. But based on my experiences, the best I can hope for is to have what I do right now -- something that I didn’t have when this first happened: other people who been there and done that, and who understand why I get so angry when a doctor even suggests that my pain, or anything else I’m experiencing, is all in my head.
Monday, April 19, 2010
Top Ten Reasons Why People Seeking Treatment for Chronic Pain Just Can’t Win
- When it comes to describing chronic pain, the 1-10 pain scale is completely useless. Among myriad other problems (including the fact that it’s subjective and relative), it lacks the capacity to reflect the devastating effects of enduring unrelenting pain over long periods of time.
- The 1-10 scale has become a psychological guessing game. Pick a number too low, and the doctor or nurse treating you is likely to respond, "A three? It’s a THREE man, a THREE. Get a hold of yourself! For threes, we use Tylenol. Here' s your paper. See the clerk out front." Respond with a number that they think is too high, and you’re deemed to be a drug-seeker, a drama queen, or a faker because anyone who “really had pain that was an eight/nine would be [insert particular behavior the medical professional feels all people who are really in severe pain exhibit].”
- If you refuse to use the 1-10 scale to rate your pain (see items 1 and 2), you’re uncooperative and won’t get treated.
- When you go to the Emergency Department (ED) because your regular pain medications aren’t helping, admitting that you take strong narcotics is viewed as proof that you’re a drug-seeker and you don’t get treated.
- If you don’t admit that you already take strong narcotics when you go to the ED because your regular pain meds aren’t helping, you won't get treated with drugs that are appropriate for someone with a high baseline tolerance level.
- If you tell a doctor that what you want are pain meds that work without causing dependency, sedation, or other harsh side effects (like chronic constipation, weight gain, dry mouth) and you’re told you’re being unrealistic.
- If you tell a doctor that you want to try opioids or need a specific narcotic for pain relief, you’re back to being a dismissed as a drug-seeker.
- Telling a doctor too often or too adamantly that the pain meds s/he’s prescribed aren't helping and you’re still in severe pain is evidence of drug-seeking behavior.
- Telling a doctor that you can barely make it to your next refill is evidence that you’re either diverting your meds or abusing them, which is of course evidence of drug-seeking behavior.
- Telling a doctor that you save your narcotic pain meds for the times when you really, really need them and you’re hoarding meds, which is also drug seeking behavior.
Wednesday, April 07, 2010
An Open Letter to My (Currently) Med-Free Friends
Dear Med-Free Crips with Chronic Pain,
I truly appreciate your commitment to remaining med-free for as long as possible. Believe me, I completely understand why you don’t want to use pain medications unless absolutely necessary. As your friend, I hate it that you have to hurt at all, but at the same time, I’m happy that you’re able to avoid all of the negatives that go along with them. The stigma, cost, and side effects that come from using narcotics to manage chronic pain, while not as devastating as the pain itself, can still be heavy burdens to bear.
What’s harder for me to appreciate, however, are the arguments that being med-free is all about having a strong will, successfully using “mind over matter” techniques (e.g. positive thinking, “blocking” out the pain, distraction), and taking the more difficult path, and that it has nothing to do with how severe one‘s pain is.
Such statements are troubling not because of what they say about the people who don’t yet use pain medications, but because of what they infer about those of us who do: that we are taking the easy way out. That we are less focused and less disciplined. That we lack willpower.
I hope you can believe me when I say that I’m not trying to dismiss or make light of your pain, or how you choose to deal with it. What I am trying to do is help you understand is that it’s hurtful and insulting to have these negative, inaccurate inferences about those who need narcotics to manage pain brought up again and again, and that from my experience, the severity of the pain does affect how well those “mind over matter“ techniques work.
You see, I was once where you are now -- able to successfully cope with the pain that’s been my ever-present, unwanted companion for years without taking any medication. I kept busy, got adequate rest, and “talked” my body out of succumbing when the pain flared. I practiced all of the same things I do now -- controlled breathing, progressive relaxation, immersion in distracting tasks. And for a long time, I managed to get by.
But as time passed, the tools that I’d successfully used for so long became less and less effective -- despite spending more time practicing my breathing and relaxation techniques, and throwing myself into my work and hobbies, I was getting almost no relief, and the little bit that I did get wasn’t lasting as long. Finally, the day came when I wasn’t able to get enough relief on my own, and I had to accept that I now needed to use medication -- in my case, narcotics -- in order to have any quality of life. It was a huge hit to my self-esteem. I took great pride in my ability to use nothing but my mind to keep the pain from crippling me -- relying on pain drugs made me feel weak, angry, and embarrassed. I thought it meant I had lost my drive and determination.
But the more I thought about it, the less sense that made. My basic personality hadn’t changed -- I was still the same stubborn person with the same positive outlook on life. I was still able to use my “mind over matter” techniques to manage stress -- in fact, getting relief had become easier, not more difficult. And I knew in my heart that my decision to finally start using pain meds was anything but easy. The only possible explanation for this change was that the pain had become so severe that even my most skilled use of positive thinking or “blocking” couldn’t keep it at bay.
That’s not to say that I’ve abandoned those techniques now that I use narcotic pain meds. Quite the contrary, in fact -- it’s those very skills that now enable me to keep my use of pain drugs as low as possible.
And that’s why I have such a strong negative reaction when I hear you declare that being med-free is all about asserting mind over matter -- not because of what it says about you, but because of what it infers about me.
I truly appreciate your commitment to remaining med-free for as long as possible. Believe me, I completely understand why you don’t want to use pain medications unless absolutely necessary. As your friend, I hate it that you have to hurt at all, but at the same time, I’m happy that you’re able to avoid all of the negatives that go along with them. The stigma, cost, and side effects that come from using narcotics to manage chronic pain, while not as devastating as the pain itself, can still be heavy burdens to bear.
What’s harder for me to appreciate, however, are the arguments that being med-free is all about having a strong will, successfully using “mind over matter” techniques (e.g. positive thinking, “blocking” out the pain, distraction), and taking the more difficult path, and that it has nothing to do with how severe one‘s pain is.
Such statements are troubling not because of what they say about the people who don’t yet use pain medications, but because of what they infer about those of us who do: that we are taking the easy way out. That we are less focused and less disciplined. That we lack willpower.
I hope you can believe me when I say that I’m not trying to dismiss or make light of your pain, or how you choose to deal with it. What I am trying to do is help you understand is that it’s hurtful and insulting to have these negative, inaccurate inferences about those who need narcotics to manage pain brought up again and again, and that from my experience, the severity of the pain does affect how well those “mind over matter“ techniques work.
You see, I was once where you are now -- able to successfully cope with the pain that’s been my ever-present, unwanted companion for years without taking any medication. I kept busy, got adequate rest, and “talked” my body out of succumbing when the pain flared. I practiced all of the same things I do now -- controlled breathing, progressive relaxation, immersion in distracting tasks. And for a long time, I managed to get by.
But as time passed, the tools that I’d successfully used for so long became less and less effective -- despite spending more time practicing my breathing and relaxation techniques, and throwing myself into my work and hobbies, I was getting almost no relief, and the little bit that I did get wasn’t lasting as long. Finally, the day came when I wasn’t able to get enough relief on my own, and I had to accept that I now needed to use medication -- in my case, narcotics -- in order to have any quality of life. It was a huge hit to my self-esteem. I took great pride in my ability to use nothing but my mind to keep the pain from crippling me -- relying on pain drugs made me feel weak, angry, and embarrassed. I thought it meant I had lost my drive and determination.
But the more I thought about it, the less sense that made. My basic personality hadn’t changed -- I was still the same stubborn person with the same positive outlook on life. I was still able to use my “mind over matter” techniques to manage stress -- in fact, getting relief had become easier, not more difficult. And I knew in my heart that my decision to finally start using pain meds was anything but easy. The only possible explanation for this change was that the pain had become so severe that even my most skilled use of positive thinking or “blocking” couldn’t keep it at bay.
That’s not to say that I’ve abandoned those techniques now that I use narcotic pain meds. Quite the contrary, in fact -- it’s those very skills that now enable me to keep my use of pain drugs as low as possible.
And that’s why I have such a strong negative reaction when I hear you declare that being med-free is all about asserting mind over matter -- not because of what it says about you, but because of what it infers about me.
Friday, March 05, 2010
I’ve Had it With…(A Collection of Mini-Rants)
…my bowels. (Nothing like starting with way too much information.) People with spinal cord damage have to devote way too much time to making sure their bowels behave. After a long period of trial and error, I’d finally found a perfect formula for pooing -- a delicate balance of fiber and water, probiotics, stool softeners and prunes was working brilliantly for me. And then I started taking a new med that causes constipation, and suddenly I’m back to square one. No one should have to spend so much time and energy on shit.
…seeing my beloved HipHubby in pain. His back is fried because he has to help haul my dysfunctional body and heavy wheelchair all over the place. We’re having a hell of a time trying to get him pan relief because there are so many drug seekers out there claiming back pain, and because doctors just don’t/won’t understand that taking a one hour class on proper lifting techniques won’t relieve his back spasms or help us determine if there are alternatives to the way we currently do transfers, etc. that might be less damaging to his well-being. It kills me to see him in pain 24/7 and know I am the cause behind it.
…people who complain of being in unbearable pain who claim they’ve tried *everything* when they haven’t. It’s getting harder and harder to hold my tongue when people go on and on in one breath about how out of control their pain levels are, and in the next tell you that they’re “just not ready to” or “don’t want to” try opioids, or can’t take X drug because it causes an annoying side effect that they don’t like. Seriously, if you’re really hurting that bad, you’ll be willing to try anything, or put up with the dry mouth/constipation/drowsiness some meds cause, to get even a modicum of relief from the pain.
…the Water and Power Authority of the US Virgin Islands. This last week, we had SEVEN power outages in four days. SEVEN. Thankfully, they were mostly short-lived, but there’s no reason at all the electricity should be going out that many times on bright sunny days, especially since we pay so much for the power we do get.
…people who really believe that the reason other people don’t like them is because “they’re just jealous.” That goes double for those who think others are out to get them because they’re so beautiful. It‘s not jealousy -- people genuinely don‘t like you, probably because you’re obnoxious in some way. Stop relying on the self-esteem preserving excuse your Mommy used to protect her precious baby’s ego and start taking a long, hard look at yourself to find out just what it is that makes you so unlikable to so many people. Everyone will be better for it.
…six episode cable TV seasons. It’s annoying when a show airs its season finale the month after its season premiere, then disappears off the broadcast schedule for 10-12 months.
…writer’s block. I have so much to say -- why the heck can’t I think of any of it when I sit down at my keyboard?
…the Medicare Prescription Drug Plan donut hole. For those who aren’t familiar with it, this little bit of public policy BS is a gap in prescription drug benefits that requires people on Medicare to pay ~$4600 out of pocket in drug costs before catastrophic drug coverage kicks in. I burn through my initial benefits and fall into the donut hole by mid-March, when I have to cough up close to $1700/month for my medications. ($1100 of that pays for just two prescriptions, the OxyContin I take for pain, and Advair, which I just started on again after three good years without it after my breathing took a turn for the worse last month.)
…not being able to sleep. I’m so tired all of the time anymore it’s ridiculous.
…seeing my beloved HipHubby in pain. His back is fried because he has to help haul my dysfunctional body and heavy wheelchair all over the place. We’re having a hell of a time trying to get him pan relief because there are so many drug seekers out there claiming back pain, and because doctors just don’t/won’t understand that taking a one hour class on proper lifting techniques won’t relieve his back spasms or help us determine if there are alternatives to the way we currently do transfers, etc. that might be less damaging to his well-being. It kills me to see him in pain 24/7 and know I am the cause behind it.
…people who complain of being in unbearable pain who claim they’ve tried *everything* when they haven’t. It’s getting harder and harder to hold my tongue when people go on and on in one breath about how out of control their pain levels are, and in the next tell you that they’re “just not ready to” or “don’t want to” try opioids, or can’t take X drug because it causes an annoying side effect that they don’t like. Seriously, if you’re really hurting that bad, you’ll be willing to try anything, or put up with the dry mouth/constipation/drowsiness some meds cause, to get even a modicum of relief from the pain.
…the Water and Power Authority of the US Virgin Islands. This last week, we had SEVEN power outages in four days. SEVEN. Thankfully, they were mostly short-lived, but there’s no reason at all the electricity should be going out that many times on bright sunny days, especially since we pay so much for the power we do get.
…people who really believe that the reason other people don’t like them is because “they’re just jealous.” That goes double for those who think others are out to get them because they’re so beautiful. It‘s not jealousy -- people genuinely don‘t like you, probably because you’re obnoxious in some way. Stop relying on the self-esteem preserving excuse your Mommy used to protect her precious baby’s ego and start taking a long, hard look at yourself to find out just what it is that makes you so unlikable to so many people. Everyone will be better for it.
…six episode cable TV seasons. It’s annoying when a show airs its season finale the month after its season premiere, then disappears off the broadcast schedule for 10-12 months.
…writer’s block. I have so much to say -- why the heck can’t I think of any of it when I sit down at my keyboard?
…the Medicare Prescription Drug Plan donut hole. For those who aren’t familiar with it, this little bit of public policy BS is a gap in prescription drug benefits that requires people on Medicare to pay ~$4600 out of pocket in drug costs before catastrophic drug coverage kicks in. I burn through my initial benefits and fall into the donut hole by mid-March, when I have to cough up close to $1700/month for my medications. ($1100 of that pays for just two prescriptions, the OxyContin I take for pain, and Advair, which I just started on again after three good years without it after my breathing took a turn for the worse last month.)
…not being able to sleep. I’m so tired all of the time anymore it’s ridiculous.
Tuesday, February 16, 2010
F.U.F.*
*Fucked Up February.
It's been a pretty shitty month so far. My body is not cooperating at all with the many, many plans my brain has made (like finishing the many blog entries I've started and answering my email backlog), and I'm pretty discouraged by the whole bloody affair.
At the core of it all is exhaustion. My prescription insurance plan made my never-ending battle to get adequate rest all the more difficult by deciding that it will no longer cover Ambien CR, the only thing that's enabled me to get even a few hours of sleep each night. At $550 a month, there's no way I can afford to pay for it out of pocket, so I've been forced to use regular Ambien instead. It's been a disaster. Last night, I took 10 mg of regular Ambien at bedtime. I was quite sleepy before taking it, so I was very hopeful that a good night's sleep would finally be mine. I slept for just under 30 minutes. Several hours later, still wide awake, I took two Advil PMs, and got another whopping 30 minutes of sleep. If I'm lucky, I'll be able to lay down and catch a couple hour nap in the afternoon, but three hours of sleep day isn't nearly enough to be functional or to keep my pain levels in check. The exhaustion hits me in rogue waves, knocking me down, disorienting me, and sucking me down into momentary unconsciousness multiple times every day.
After being remarkably stable for the last few years, my pain situation is getting worse, too, and it scares me. There's several new forms of severe central pain that have been making regular appearances on the areas of my body that were the most affected by neuropathic pain after my second tumor surgery -- my upper left arm, shoulder, and arm pit, and right hip, thigh, and butt cheek. These pains started out as intermittent, but are now constant and are not responding to the pain meds I take. The worst is the raw, burning pain in my arm pit. I confused it at first with a severe reaction to a clinical strength antiperspirant, but there's no irritation present and the pain gets much worse when anything touches that area. I'm fearful that these are going to get worse, possibly even progressing to the level of severity I experienced after that second surgery -- what's now my benchmark for level 10 pain.
As if all this wasn't enough to fuck me up enough to keep me from doing the things I want to do, my lungs have gone to hell for the first time since coming to the USVI. I'm severely short of breath, my lungs are tight, and even though they sound clear, I'm still having frequent bouts of rattling, wheezing, and bringing up a lot of green gunk (without a fever or any other signs of being sick). Getting air became so hard that I was hitting my rescue inhaler five or six times a day at two puff per, which is not only a poor management strategy, it can be downright dangerous. It doesn't help that I'm also dealing with more frequent occurrences of the MS Hug, a spasm of the band of abdominal muscles at the bottom of the rib cage that makes you feel as though an anaconda is wrapped around your midsection and squeezing the life out of you. After being off of it for the last few years, I've started using the strongest formulation of Advair again in the hope that I'll be able to breathe more easily without being permanently attached to an inhaler or a nebulizer. I was a little relieved to know that I'm not the only one having breathing problems as of late. My pharmacist was sold out of Advair when we went to fill the prescription -- he'd sold a month's supply in less than a week.
Something's gotta give, and soon. I can't keep going like this.
Saturday, January 23, 2010
I HATE THIS $^q@$!@#$#&*##!@! PAIN
I am exhausted.
This is the second night in a row that I haven't been able to sleep because multiple sources of pain are raging out of control, each aggravating and amplifying the others so badly that they've now formed a chorus that's drowned out 80mg of Oxycontin, 30mg of oxycodone, 12.5 mg of Ambien CR, and a Vicodin ES.
I want nothing more than to close my burning eyes and escape to the land of sleep where these monsters have a harder time reaching me. But escape is too elusive. My back is screaming at the top volume where the T5 disc and vertebra is being crushed as the ten fused vertebrae directly above succumb to gravity's pull and bear down with all their might. The left shoulder and upper arm are a fireworks display of all manner of neuro pain that bursts forth randomly -- broken glass being ground in to the underside of the arm; hot, hair thin needle clusters driven into the cold, stinging, burning of the left arm pit; the large needle probing my left scapula as it tries to suck the marrow from deep within the bone; hot, electrified knitting needles that thrust upward from the bed into the right hip, triggering bursts of current that travel down the hamstring and explode in the knee; the maddening, ever present itch on my upper left arm, a phantom mosquito bite that never goes away and can never be relieved no matter how vigorously it's scratched; the deep, slow burn within my right shoulder, a reminder that the arm is no longer in the socket; and the hot, burning ache of overworked, exhausted biceps and triceps coupled with a badly knotted trapezius muscle caught in a frenzy of myclonic spasms that are going off, every two seconds or so and could last for hours.
I HATE THIS $^q@$!@#$#&*##!@! PAIN.
This is the second night in a row that I haven't been able to sleep because multiple sources of pain are raging out of control, each aggravating and amplifying the others so badly that they've now formed a chorus that's drowned out 80mg of Oxycontin, 30mg of oxycodone, 12.5 mg of Ambien CR, and a Vicodin ES.
I want nothing more than to close my burning eyes and escape to the land of sleep where these monsters have a harder time reaching me. But escape is too elusive. My back is screaming at the top volume where the T5 disc and vertebra is being crushed as the ten fused vertebrae directly above succumb to gravity's pull and bear down with all their might. The left shoulder and upper arm are a fireworks display of all manner of neuro pain that bursts forth randomly -- broken glass being ground in to the underside of the arm; hot, hair thin needle clusters driven into the cold, stinging, burning of the left arm pit; the large needle probing my left scapula as it tries to suck the marrow from deep within the bone; hot, electrified knitting needles that thrust upward from the bed into the right hip, triggering bursts of current that travel down the hamstring and explode in the knee; the maddening, ever present itch on my upper left arm, a phantom mosquito bite that never goes away and can never be relieved no matter how vigorously it's scratched; the deep, slow burn within my right shoulder, a reminder that the arm is no longer in the socket; and the hot, burning ache of overworked, exhausted biceps and triceps coupled with a badly knotted trapezius muscle caught in a frenzy of myclonic spasms that are going off, every two seconds or so and could last for hours.
I HATE THIS $^q@$!@#$#&*##!@! PAIN.
Wednesday, January 06, 2010
My Pain is a Ten
Depending on the pain scale you reference, level 10 pain is defined as either “the worst pain you’ve ever felt” or “the worst pain you can imagine.” I think the latter definition is the more valid of the two. After all, if the only pain someone has ever experienced is from a paper cut, then that’s the worst pain they’ve ever felt.
When you hang out on message boards for nurses, people with spinal cord problems, and people with degenerative conditions, you hear a lot of people talking about being in pain, and there’s more than a few who report 10/10 pain all of the time. I’m not one of them, and probably won’t ever be. No matter how severe my current pain gets, no matter how disabling and detrimental it is to my mental, emotional, and physical well-being, it’s not even close to the worst pain I’ve ever felt.
My level ten pain benchmark was set in 1978, when I was 15 years old.
That was the year I had a second surgery to try to remove a malignant tumor in my cervical spinal cord and brain stem. Because the cancer was totally intertwined with the cord, the surgeons had to cut out large tracts of the spinal cord along with the tumor.
After the operation, the damage to and swelling of the remaining cord caused central pain and severe allodynia in my upper left (breast, shoulder, arm, and hand) and lower right (butt cheek, leg, foot and right side of the pubic area) quadrants. Those areas felt as though they were simultaneously burning and freezing, and my skin was so hypersensitive that the slightest touch was torture. A puff of air across my leg felt like I was being flayed open. A tear that rolled off my cheek and landed on my shoulder hurt as bad as if a butcher knife was being plunged into my body. Laying on the bed and being covered by a sheet was gut wrenching, all consuming, unable to think, unable to do anything but sob and scream out loud agony. The massive doses of morphine they injected into me every three hours did little to ease the pain -- all it did was sedate me enough to keep me from losing my mind and begging to die.
Fortunately, the as the swelling in the cord went down, so did the hypersensitivity. I was able to cope with wearing clothes by the time I was released from the hospital several weeks later, and over the course of the next year the burning/freezing pain diminished (although in my left shoulder it was replaced by a host of other forms of neuropathic pain). My right leg no longer has central pain, but it is hyperalgesic. When I experience noxious stimuli in that leg, the pain is far more intense and lasts much longer than other places in my body.
But nothing I’ve experienced since then -- nothing -- has come close to the pain I felt back then. The only time I’ve felt anything close is when I broke my hypersensitive right leg in 2008. Even though the pain of that break left me screaming each time my ankle was moved, I could only rank that pain as 9/10.
I try not to judge people who say they are in 10/10 pain all of the time. They’re clearly experiencing severe pain, and I know how hurting so bad all of the time wears on you. It robs you of your life and it destroys your soul. But my personal belief is that if the pain you’re having doesn’t totally incapacitate you -- if you’re coherent enough to form complete thoughts, if you’re able to communicate with others using actual sentences, if you’re able to sleep each night and get up and go through the motions of life each day -- you can not honestly say, “My pain is a ten.”
YMMV.
When you hang out on message boards for nurses, people with spinal cord problems, and people with degenerative conditions, you hear a lot of people talking about being in pain, and there’s more than a few who report 10/10 pain all of the time. I’m not one of them, and probably won’t ever be. No matter how severe my current pain gets, no matter how disabling and detrimental it is to my mental, emotional, and physical well-being, it’s not even close to the worst pain I’ve ever felt.
My level ten pain benchmark was set in 1978, when I was 15 years old.
That was the year I had a second surgery to try to remove a malignant tumor in my cervical spinal cord and brain stem. Because the cancer was totally intertwined with the cord, the surgeons had to cut out large tracts of the spinal cord along with the tumor.
After the operation, the damage to and swelling of the remaining cord caused central pain and severe allodynia in my upper left (breast, shoulder, arm, and hand) and lower right (butt cheek, leg, foot and right side of the pubic area) quadrants. Those areas felt as though they were simultaneously burning and freezing, and my skin was so hypersensitive that the slightest touch was torture. A puff of air across my leg felt like I was being flayed open. A tear that rolled off my cheek and landed on my shoulder hurt as bad as if a butcher knife was being plunged into my body. Laying on the bed and being covered by a sheet was gut wrenching, all consuming, unable to think, unable to do anything but sob and scream out loud agony. The massive doses of morphine they injected into me every three hours did little to ease the pain -- all it did was sedate me enough to keep me from losing my mind and begging to die.
Fortunately, the as the swelling in the cord went down, so did the hypersensitivity. I was able to cope with wearing clothes by the time I was released from the hospital several weeks later, and over the course of the next year the burning/freezing pain diminished (although in my left shoulder it was replaced by a host of other forms of neuropathic pain). My right leg no longer has central pain, but it is hyperalgesic. When I experience noxious stimuli in that leg, the pain is far more intense and lasts much longer than other places in my body.
But nothing I’ve experienced since then -- nothing -- has come close to the pain I felt back then. The only time I’ve felt anything close is when I broke my hypersensitive right leg in 2008. Even though the pain of that break left me screaming each time my ankle was moved, I could only rank that pain as 9/10.
I try not to judge people who say they are in 10/10 pain all of the time. They’re clearly experiencing severe pain, and I know how hurting so bad all of the time wears on you. It robs you of your life and it destroys your soul. But my personal belief is that if the pain you’re having doesn’t totally incapacitate you -- if you’re coherent enough to form complete thoughts, if you’re able to communicate with others using actual sentences, if you’re able to sleep each night and get up and go through the motions of life each day -- you can not honestly say, “My pain is a ten.”
YMMV.
Monday, January 04, 2010
It’s the Little Things That Really Hurt
Those of you who’ve followed this blog know that I live with chronic pain. Lucky soul that I am, I’ve got both types of pain: neuropathic (or central), from the damage to my spinal cord by the tumor and surgeries to treat it; and nociceptive, caused primarily by the stress a ten-level spinal fusion puts on the vertebrae immediately below, a severe contracture in my right hip, muscle spasms and spasticity, residual pain from my now healed tib/fib break near my right ankle, and a permanently dislocated right shoulder. (The right shoulder problems occurred during my hiatus -- the story warrants its own entry somewhere down the road.) It doesn’t help that the spinal cord damage (SCD) makes my right leg and foot hyperesthesia, making me extremely sensitive to pain stimuli -- any pain to that leg is stronger and last longer than similar pain in other unaffected parts of my body.
With so many types of severe pain ever present in my life, all of the years that I’ve dealt with it, the myriad ways I’ve developed to cope with it, and the handfuls of medications I take to keep at manageable levels, why does having a stye in my eye or an irritated taste bud on my tongue still hurt so frickin’ bad??
In the grand spectrum of pain, those are little things. Ask anyone, “What’s more painful, having broken glass ground into the underside of your arm (one form of my central pain) or having a stye? A dislocated shoulder or an inflamed taste bud?” and they’re going to pick the broken glass and the dislocation. I’m no different -- I know, without a doubt, that all of the forms of pain I deal with should be far more painful than a little red lump on my eyelid or white bump on my tongue.
Yet these little things HURT. Most times, the discomfort isn’t overwhelming. But now and again, they’ll flare -- sometimes enough to make me tear up and emit a muffled groan. I have both right now, and heaven help me when I forget about the taste bud and run my tongue over my teeth. Don’t even get me started on what it’s like if I happen to blink at the same time.
It makes me crazy trying understand why these little things can cause flashes of agony that can feel worse than more severe than the pains that are always with me.
It makes no sense.
It bugs me.
It gives me a headache.
Which, of course, is just what I need.
With so many types of severe pain ever present in my life, all of the years that I’ve dealt with it, the myriad ways I’ve developed to cope with it, and the handfuls of medications I take to keep at manageable levels, why does having a stye in my eye or an irritated taste bud on my tongue still hurt so frickin’ bad??
In the grand spectrum of pain, those are little things. Ask anyone, “What’s more painful, having broken glass ground into the underside of your arm (one form of my central pain) or having a stye? A dislocated shoulder or an inflamed taste bud?” and they’re going to pick the broken glass and the dislocation. I’m no different -- I know, without a doubt, that all of the forms of pain I deal with should be far more painful than a little red lump on my eyelid or white bump on my tongue.
Yet these little things HURT. Most times, the discomfort isn’t overwhelming. But now and again, they’ll flare -- sometimes enough to make me tear up and emit a muffled groan. I have both right now, and heaven help me when I forget about the taste bud and run my tongue over my teeth. Don’t even get me started on what it’s like if I happen to blink at the same time.
It makes me crazy trying understand why these little things can cause flashes of agony that can feel worse than more severe than the pains that are always with me.
It makes no sense.
It bugs me.
It gives me a headache.
Which, of course, is just what I need.
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