Pain patients: newest targets for abuse and discrimination.

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In our increasingly sociopathic and cold-blooded society, the most vulnerable people are falling through the cracks and no one seems to care. It’s a popular sport these days to target the poor, elderly, mentally ill, sick, disabled and otherwise vulnerable and blame them for all of society’s ills–and of course for their own lot. Many people today think helping these people is just “enabling” them and that somehow they deserve their lot. Some Prosperity Gospel “Christians” even say that to help them is a sin because the reason they suffer is because they are morally inferior and displeasing to God. All this is nothing more than societal gaslighting, and to Christians who want to live as Jesus did, such views are pure heresy and evil.

Now there’s a new group of targeted people–chronic pain patients. My housemate, who I’ve written about before, suffers from chronic, debilitating pain due to fibromyalgia and injuries sustained in a car accident she was involved in more than thirty years ago that has caused bone fusion and scar tissue buildup. Some days are so bad she can hardly move, and spends the entire day in bed, sometimes crying from the pain. But she’s been unable to get any pain medicine that works. She has been to 20 or 30 different doctors, and all refuse to prescribe any kind of opiate medication, the only kind that works for her.

My housemate is not a drug addict. She has no history of drug addiction. Before she moved to this state, her doctor prescribed her Oxycodone, which relieved her pain. She did not get high from it or take more than the prescribed amount. When she moved here, her medical records were transferred, but no doctor here will even look at them. She’s been to several pain management doctors, but all they will do is give steroid injections, which require twice weekly visits (she does not have any method of transportation so this is a hardship) and are much more expensive than her previous opioid medicine was–the frequent copays cost much more than she can afford, and only a portion of injection treatments are covered. They also don’t work for her pain. Physical therapy hasn’t worked either. In fact, she says it makes the pain worse.

But because she has asked doctors for the same pain medicine she was getting in her old state, and keeps trying new doctors, she has been redflagged as a “drug seeker” and “doctor shopper” and “shows addictive behaviors.” She was required to attend a drug assessment and passed it, but she still can’t get any doctor to give her a prescription. Pain patients are being stigmatized as addicts even when they are just doing what anyone in their right mind would do when denied medicine that works–going to a different doctor. My housemate (who is moving back to the state where her old doctor was) continues to suffer and can barely function due to the pain.

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I decided to do some research on this issue, and it turns out she’s far from alone. Profiling pain patients as if they’re criminals and stigmatizing them as drug addicts has become a new epidemic in this country, and it’s because of the recent DEA crackdown on opioid pain medicines, which have been sold for years on the black market as recreational drugs. Some people have speculated that the increasing difficulty in obtaining pain medicine legally is due to the relaxation of marijuana laws that have decriminalized or even made medical marijuana legal in many states. The DEA needs a new bogeyman, because that’s their bread and butter and there’s a lot of money involved, so now they’re going after pain patients.

Only cancer patients can (theoretically) be legally prescribed opioid pain medication without having to submit to all sorts of unnecessary drug and psychological tests (these protect the doctor rather than the patient) and jump through medical hoops to get the medicine they need. But even they sometimes fall through the cracks, especially in states like Florida where the drug laws are especially draconian. Darlene Patsos, a Florida woman with Stage 4 lung cancer, was denied access to any kind of palliative pain relief, even though she was terminal. This is unconscionable and appalling–and cruel beyond belief. You’d think we were living in the Middle Ages instead of 2016.  This simply should not happen in any technologically advanced society.

No one, whether they have cancer or some other condition causing chronic, severe pain, should be profiled like a criminal and denied medicine that improves their quality of life and allows them to function instead of being bedridden because they’re in too much agony to do anything else. Yet doctors are denying patients these necessary medicines because they’re afraid the DEA might come after them. So they’ve adopted a one-size-fits-all pain management regime that consists of less effective (and more expensive and time consuming) “alternative” treatments–and that size doesn’t fit everyone. Whatever happened to the sanctity of the doctor-patient relationship? Since when do doctors have less authority than these law-and-order thugs who tell them what they can and cannot give to their patients? Methinks the people who approve of these ridiculous new drug laws are the same ones who loudly scream about “too much government.” This country is running amok with these sort of heartless hypocrites who want everything for themselves and could give a rat’s ass about you. You’re in so much pain you can’t sleep at night, can’t work, can’t take care of your kids, are a burden on your family, can’t have any quality of life at all? The injections of dangerous steroids and physical therapy aren’t working? Oh well, sucks for you. I’m fit and healthy and can afford to pay an expensive specialist out of pocket for opioids if I ever have chronic pain–but I’ll never be in your shoes anyway.

I read a website by an empathetic doctor who wrote a blog about this issue, and there are hundreds of responses, mostly from chronic pain sufferers. They are heartbreaking. Many describe contemplating suicide because the pain is so unbearable. Some had been getting opioid pain relievers without any problems for years, and their doctors suddenly stopped their prescriptions when the DEA began to crack down, in some cases pulling the medication from them cold-turkey, so not only did their patients have to deal with sudden severe pain, they had withdrawal symptoms as well.  Some were forced to go to the black market to obtain pain medicine, risking arrest and the possibility of taking something impure or dangerous.   The suicide rate among pain patients is up 30% since the DEA began to crack down, and many of the entries describe friends and relatives who died by their own hands, because they were no longer able to cope with their pain. But to the DEA, I guess it’s better to have no quality of life and end it in suicide or turn to the black market (heroin is easier to obtain than legal pain medicine) than to run a small risk (4% for pain patients) of becoming addicted.

This issue needs to be addressed.  You can help by sending a letter to Congress.

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“Doctor shopping”? Oh, PLEASE!

Not long ago, I wrote about my housemate, a woman several years older than me who lives with chronic, unrelenting, severe pain due to a number of chronic medical conditions. I ranted about how none of the doctors will prescribe this woman any pain medicine, because of the dumb drug laws in this state, which are very strict. But IMHO, they’ve gone way too far. If you’re wealthy, of course, you can pay a doctor to give you pain medicine, but because this woman is on SSDI and gets Medicare, she doesn’t have much choice in who she can see. Now she is being accused of “doctor shopping” and is required to attend an evaluation for substance abuse before anyone can prescribe her anything. As far as I know, this woman has never been addicted to drugs! Oh, but she might *get* addicted. *eyeroll*  She might even be distributing, even though she is 60 years old, can barely walk, and doesn’t know anyone here anyway.  So I guess she’s just supposed to LIVE with the pain?  If it were me, you’d better believe I’d be “doctor shopping.”

She’s supposed to be having surgery (knee and shoulder replacement), but they keep putting it off and in the meantime, are doing NOTHING to help her.

I wouldn’t normally get involved in something like this, because under normal circumstances it would violate my boundaries (and probably hers too), but I wrote this letter of my own accord, because I am at my wit’s end and my boundaries are being violated anyway, by this woman’s constant pain I must deal with.  I will not toss her on the streets (although I could and may have to if things don’t get better or she gets much worse) but it’s very, very difficult to live with someone in severe, chronic pain who talks about nothing else, even if it’s a close relative like your mother, but this is a woman I didn’t know from Adam until last October. I don’t know how much this letter is going to help (it’s probably more useful as a rant to get things off my own chest); she probably needs to get an advocate (I know they’re out there), but I have no idea how she would go about getting one.   The behavior of the so-called “medical profession” toward people like my housemate is appalling, in my opinion. So I ranted off in this letter, which I hope you can read. You may need to click on the photos to make them large enough to read.

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Chronic pain sufferers punished by the “war on drugs”

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I don’t have a lot of medical knowledge and normally I don’t pay a lot of attention to the pharmaceutical drug industry and its laws, but my housemate has a huge problem and there seems to be no solution other than her considering turning to the black market–or even suicide.

My housemate suffers from several medical conditions that cause her chronic, excruciating pain in her back and joints, as well as fibromyalgia. She’s been to at least 15 doctors and not one of them will prescribe her any effective pain medication, because they’re afraid she might become “addicted.”   We’re talking about a 60 year old woman who can barely move due to the chronic pain that keeps her from sleeping and makes her moan out loud at night.   I’ve actually seen her sitting on the edge of her bed, rocking back and forth crying from how bad the pain is.

Only one doctor prescribed anything that worked, but it was a much lower does than she needs, so she was forced to take more than the prescribed dosage.  When she ran out before the refill date, he refused to prescribe it again because “she showed signs of addiction.”   She was forced to go the the ER just to get something to relieve the pain and they only gave her enough pills for a few days.  She can’t even get a prescription for medical marijuana (but her pain is so bad that weed doesn’t help).  A couple of these doctors have told her it’s “all in her head” and to try to focus on other things.  But if you have pain as bad as my housemate does, the pain is all you CAN focus on.   I think women in particular are sometimes not taken seriously by doctors. I wonder if it might be easier for her to get appropriate treatment if she were a man.

 

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Her only alternative seems to be injections given by a pain management specialist, but these would require constant trips to the doctor and are more expensive than her insurance will cover. She doesn’t have the money to pay out of pocket for the portion that isn’t covered and she doesn’t have a car to get to the doctor anyway (I can’t take her because I have the car during the day).  Right now, she’s taking up to 20 Ibuprofen a day, which will probably destroy her liver.

This is a real problem in this country because of the DEA and its stupid “war on drugs,” which includes the crackdown on medications known to be effective for chronic pain because of their status as “controlled substances.”    As a result, we have a huge black market for drugs like Oxycontin, which even chronic pain patients–not kids looking to get high–rely on to get the relief they need.  Of course, if they get caught, they become criminals and could go to jail–just because they couldn’t stand to live with the pain.   It’s just another way our society wages war on its most vulnerable members.

The only reason my housemate hasn’t gone to the black market is because she’s new to the area and knows no one (I can’t help her there).    I was talking to someone the other day about her problem, and they told me about a cousin who actually committed suicide because he couldn’t get medicine for his chronic pain.   Apparently, this isn’t uncommon.  I thought it was only a problem in my state, but  I just read this article and it seems the problem is widespread in this country:

http://www.lynnwebstermd.com/dea-inflicts-harm-on-chronic-pain-patients/

I’m not sure what my housemate can do.  I hate to see anyone suffer that much and can’t offer her any other solutions other than “keep trying more doctors.”  But it seems they all live in mortal fear of the DEA.

Guest post #3: Facing Complex Post-Traumatic Stress Disorder

I’m happy to introduce my third guest blogger, Alisha, who has a blog about living with Complex PTSD (C-PTSD) and chronic pain. She was kind enough to write this powerfully written guest post for this blog. I loved reading it because it ends with a message of hope, no matter how bad things might seem. Please visit Alisha’s blog, The Invisible F.  She has another blog featuring her fantasy writing, including her novel, The Return of the Key.

From her About page:

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Hi, my name is Alisha. I’m a proud alumnus of the University of Westminster where I did my MA in International Journalism. I love parrots, singing, drawing, sharing stories, fantasy movies, games and books, and people who like fantasy movies, games and books.

I live with a number of chronic health conditions including fibromyalgia, clinical depression, anxiety, & Complex Post-Traumatic Stress Disorder, and for much of my life have suffered from debilitating symptoms. I want to raise awareness to help people understand but moreso to share and engage with all those whose lives are touched by fibromyalgia and mental health problems in one way or another, so they know they’re not alone.

Facing Complex-Post-Traumatic-Stress-Disorder
By Alisha, The Invisible F.

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I was sitting in a small room at hospital when the psychiatrist’s voice called me away from the brilliant white walls that were pulling me in.

“You’ve had a very difficult life Alisha” she said, looking at my notes. After asking me to recount some of my ordeals, she said “From your symptoms, I would say you have Complex-Post-Traumatic-Stress-Disorder (C-PTSD).”

I had to ask her how C-PTSD differed from PTSD, which many of us associate with soldiers who have served in warzones or conflicts. She explained that C-PTSD tends to occur in people who have suffered repeated traumas for a prolonged period, with no chance of recovering from each incidence.

The more she told me about it, the more I felt like she was telling me about myself.

I had a long history of abuse starting in childhood, when I honestly believed I wouldn’t live to see the age of 18. I survived, thankfully, but I continued to endure traumas past my teenage years and into my twenties. I can’t say which incident was worse, because I felt the enormity of each one added to the already heavy weights that I carried. At 16 I was diagnosed with depression and anxiety, suffering terribly painful anxiety attacks that made my chest hurt so much I thought I would die.

I tried to ignore the feelings my past stirred up, because I lived in a society that stigmatises mental health conditions. I thought I was fine. It was only years after my stepfather and friend were brutally murdered, that I started getting glimpses of the brokenness I had masterfully hidden from the world and myself. I packed my bags and left everything and everyone I loved behind, moving to the other side of the world. Surely pain wouldn’t follow me there. But we can’t unknow things, and there was a lot of pain etched on my heart and mind. These parts of me would not let me forget.

C-PTSD manifesting

The C-PTSD diagnosis made sense but I was still surprised. Mostly because I wasn’t expecting another label. I already lived with fibromyalgia, depression and anxiety and several months before had been slapped with borderline personality disorder, which I was still struggling to come to terms with. I could say very clearly what some of my symptoms were, but I couldn’t always say which diagnosis was responsible for what I suffered on any given day.

As time passed and I connected the dots, I understood more about how deeply C-PTSD had been affecting my everyday life, unknown to me.

Days before I met the psychiatrist at hospital, I was sitting in Accident & Emergency having a meltdown, unable to cope with the avalanche of emotions tumbling through me. I wanted to give up again and almost did. I didn’t understand why the smallest upsets felt like utter catastrophes, or why I seemed to attract bullies or why getting close to people terrified me so. The doctor was most empathetic about it.

“Well you’ve had a lot of bad experiences with people so that is going to shape your outlook. It doesn’t mean your outlook is wrong. It only means your experiences have shaped your perspective” she said.

If only other people were that understanding. Not too long before I had encountered very unsympathetic people in a shared flat where I resided. Just when I thought I was recovering from the dark feelings that led to two close calls on my life, I discovered that approaching the close of my twenties, I was having night terrors. I had never even known there was such a thing until it was googled by a flatmate who constantly complained about my screaming at night. I couldn’t believe that I was screaming while asleep with no recollection of it the next morning. I didn’t believe it until my own screams woke me in the dead of the night. Frightened and panicked, I searched around my room until reason returned, and I questioned what it was that I was looking for, and so terrified of.

Nightmares

I have a long history of nightmares, which started in childhood. The kind that leave you so terrified you’d do anything to keep yourself from drifting off, anxious of what’s waiting for you in the realm of dreams. Consequently, I developed insomnia from a young age. Generally, my anxiety tends to get worse at night. It’s not uncommon to find me wide awake in the wee hours of the morning when most people are getting their best sleep. I’ve always slept better in the day, when the sun is out and it somehow feels safer. When I (reluctantly) have to go to sleep at night, I clear my room to make sure there’s no clutter that might form awkward shadows, that may frighten me when I wake in between my cat naps.

My flatmates couldn’t understand the nature of night terrors, and I was accused in person, by email and text like a perpetrator. I felt bad about it, truly. The accusations though, only distressed me more, and increased the frequency and severity of the night terrors.

Recently, I started sleeping walking, and I often wake up running towards my bedroom door terrified, with no recollection of my dreams.

Living with C-PTSD has been like sitting in a prison inert, long after the doors have been opened. I have wanted so badly to walk through, tending to avoid things and places that remind me of past traumas. I think of all the positive things I’ve managed to achieve through my beleaguered time here. I spend my waking hours keeping extremely busy so I rarely have time for stray thoughts, and it works; but everytime I go to rest, my subconscience reminds me of the many demons I’ve buried and hidden away.

In my dreams I am always running, looking for an ally, and an escape that is rarely found. I often run in different directions, only to end up right back in the place where my captors are waiting by the prison doors. When I am not shut away, I am violently murdered, again and again, like a broken cassette sticking in the same sickening place.

The things I said I’d never do

I suppose I never realised how my past traumas were affecting me until my late twenties. People would say, ‘it’s the past, just leave it behind and move on.’ Or worse ‘everyone has problems.’ If only it were that simple. I’d give these people a chance to walk in my shoes if I could, and silence any doubts. I want to forget, and I do everything possible to move forward, but the mind is such a powerful thing. All my efforts have been no match for my mind which digs up torments when I am asleep.

Owing to C-PTSD, I’ve done a lot of those things I said I would never do. You know when we watch others suffer and silently judge, telling ourselves, ‘that will never be me’? At 17 I remember watching my 30-something year old friend elaborately explain how she avoided the doctor’s questions when he asked how she accidentally cut her arm again, needing stitches. When I asked her directly, she brushed it off, and I sat there thinking I will never understand this.

I didn’t think of my friend when I first hurt myself. All I remember thinking was how good the external pain felt, taking the focus away from my internal turmoil. Months later I diverted from my healthy diet and found myself facing bulimia. The first time I felt confused, wondering why I kept eating though I was satisfied. But I craved the food badly, I ate and I ate, until I felt so physically upset I had to empty my stomach. I cried & cried every time because I wanted to badly to stop but I had no control, and that was the part that got me. I didn’t even have control over me.

It’s sad that after everything I’ve suffered I’ve also had to deal with bullies who have targeted me because they know they could. I try to build myself up, to be stronger and braver in the face of this. I do psychotherapy and I’m not sure it helps. Maybe? Doctors say I will likely need therapy for the rest of my life. I’m not sure how I feel about that.

Every day is a challenge. But I wake up and set out to do my very best. I try to practise mindfulness and celebrate my successes. Whether they are publishing a new book, managing to stay out of hospital or simply getting out of bed when I feel like shit, I celebrate them all equally, because I know what it is like to be crippled by depression and C-PTSD. I know very well what it’s like to lie in bed unable to will myself up; to want to shower or make a cup of tea and not be able to do so. I know what it’s like to feel that it’s safer to stay alone than get close to people…to stay indoors for days, unable to set a foot outside the front door. So every day I achieve something, no matter how small, I pat myself and say ‘well done, you’ve done it today so when you think you can’t do it tomorrow, just remember you did it today.’

The one dream

I’ve told you what many of my nightmares consist of. But it would be remiss of me not to mention the one dream that overshadows every nightmare that comes.

In this dream, I carry a heavy babe in my arms as I climb a tall, rickety winding staircase leading to a wall. With every step I take, the child becomes heavier. When I’m almost to the top, the staircase crumbles like dust in the wind. This part of the dream ends abruptly, like a director’s cut in a poorly edited movie, and when I open my eyes I am on the sea front, surrounded by people who cannot see me. The rippling turquoise waters beckon me and I do not resist. I walk into them and as I float farther in, the waters envelope me, washing away every heavy burden my soul bears. I embrace the waters filling me up as I begin knowing a kind of peace. It almost feels…like home, where my soul will find rest, so I let it consume me. But as my consciousness ebbs, a hand reaches through the veil of the waters, and pulls me out. And again, the scene ends abruptly. I awake as a child, amongst the laughter and play of my fair cousins.

My aunt, an interpreter of dreams says the heavy child I carry represents the burdens I bear; the seaside scene is the deception of suicide and my subconscience believing that it is there I will find rest from the pain that plagues me. She says the hand pulling me out of the waters, is the truth that I am not lost, that redemption can, and will be found…that even when I am drowning, no matter how close I come to death’s doors a power higher than any torment and death will lift me up.

I press on, finding strength in my faith and true friends who embrace me, imperfections and all. I am encouraged by sharing with others in the same boat, by bringing a good word to those who need it. Maybe doctors are right…maybe I will need therapy for the rest of my life. Maybe. All I know is I’ve managed to make it this far, when I didn’t think I could. You could have told me a thousand times that I’d make it, but I wouldn’t have known if I didn’t walk this road myself.

A million hugs & prayers for your courage & peace of mind.

Love Alisha