Discrimination Against Chronic Pain Sufferers…

Discrimination Against Chronic Pain Sufferers…

In September 2016 I posted about Chronic Pain & Pills… and the difficulty a family member was having. He is 73 and retired after 47 years of steady and often physically challenging employment. He was a tractor-trailer driver for 40 of his 47 years in the workforce so essentially sat in the cab of the truck for over 10 hours a day. He began feeling ill in 1991 but typical for him wouldn’t take off work to see a doctor until I finally insisted. His PCP at the time diagnosed him with fatigue. Hmmmm. As a nurse,  the diagnosis of fatigue didn’t sit well with me so once again I insisted he seeks a second opinion. This doctor ordered basic blood work and when it came back within normal limits, he also diagnosed him with fatigue. Again my professional experience kicked in and I instinctively felt they were both wrong; it was more than fatigue but I didn’t know what or whom to turn to.

One night while working at the hospital I saw a pamphlet about Lyme Disease which was still somewhat new in 1992. I remember looking at it and with each paragraph, my mouth fell open a bit more. It specifically described the symptoms and the discomfort he’d been experiencing since the previous summer. More telling, however, was the photograph of the classic red rash; a red ring surrounding a clear area and a red center. I remembered he’d been bitten by a tick the summer of 1991 and developed an identical rash. Small at first, it enlarged in size over days/weeks until it was approximately 6” in diameter. It lasted for at least a month and always felt warm. I realized that I might have found the answer to his lingering illness so made an appointment with an ID (infectious disease) specialist in  Philadelphia. After a comprehensive examination and specific blood tests, she diagnosed him with Stage 3 ( late disseminated) Lyme disease. He was hospitalized in ICU and after several days transferred to a medical floor for nearly a week. He had a port implanted in his chest prior to discharge and once home, received IV antibiotics for several weeks through it.  Finally, after what seemed like an eternity he began to feel better. Unfortunately, Stage 3 Lyme Disease can cause long-term joint inflammation (Lyme arthritis) usually in the knees along with a host of other complications, many which continue to resurface years later. He developed severe arthritis in his knees which the ID specialist thought was probably made worse by his profession ~ driving for long hours all week. He also developed arthritis in his hands, specifically in his fingers. It hurt his hands to try to grip things and he often dropped them. As a  driver, he often had to unload freight. I  remember he developed callouses on his inner wrists. When I asked what caused them, he said he was unable to unload the freight by hand so picked the boxes up using his wrists. Yet not once did he complain.  His dedication and strong work ethic were beyond reproach.

Shortly after moving to Maine he started seeing a rheumatologist for his arthritis. He began receiving injections to his knees which initially worked very well but as the years passed the effect of the injections didn’t last as long. He was still working so his knees were bent every day and he was frequently unloading freight by his wrists. His rheumatologist prescribed Vicodin which he only took on the weekend and even then, only if he couldn’t stand the pain. When he retired at age 66, he was finally able to live the kind of life most of us take for granted. He had the freedom to watch the news on television, walk the dog, drive to the store, sleep in a regular bed, make toast and a cup of tea in the kitchen. All those little everyday things that he wasn’t able to do for 40 years while living in a truck. Yet even with these lifestyle changes, his knees and hands continued to hurt and were steadily worsening. He had the Vicodin prescriptions filled every month even if he had leftovers from the previous month because he didn’t want the doctor to think he didn’t need them. They were prescribed four times daily as needed but rarely did he take more than one or two a day and some days none at all. 

He went to the rheumatologist for his routine appointment in March 2016 and upon arrival was told they needed a urine sample.  When leaving he was given a paper saying that in the future he had to bring his Vicodin bottle with him. That was new but given all drug-related issues in society not surprising. In the beginning of April,  the doctor’s office called to say the test didn’t indicate enough Vicodin in his system so it would no longer be prescribed for him. Dumbfounded doesn’t even come close to describing my reaction. He was glad he had leftover pills because when the Vicodin was stopped nothing else was prescribed. He didn’t see the rheumatologist until August so he would have been in horrible pain for five months. During the August visit, the doctor said that he wasn’t allowed to prescribe Vicodin based on the urine test, that it wasn’t his policy but rather that of the hospital whose umbrella he was under. He added that the hospital was working with the state to decrease narcotic prescriptions. He prescribed a different medication which is completely ineffective against the severity of his pain.

It pains me to watch him struggle to get up from a chair or limp when he walks. My heart aches as I see him wince in pain when trying to open a jar. Now is the time he should be enjoying his life but because of chronic pain, he is doing anything but. He wants very much to go to Tennessee this summer to visit his family but is worried that his arthritis will affect him; that he won’t be able to participate in simple activities with his grandchildren due to his pain level. Every week I read of more drug-related arrests and indictments in our small rural community. Many are for trafficking which simply amazes me. Where do they get the drugs? If a 73-year-old man with arthritis so severe and painful that it’s adversely affecting his life can’t get a prescription, where are these people getting them? I asked his PCP about it but he said he doesn’t prescribe for a patient who’s been “cut off” by another provider.

As to the medical center’s across the board policy, I have to wonder if it ever crossed their minds that not every person with chronic pain is a potential trafficker? That not every senior citizen is supplementing their income by selling some of their pain pills? Why do doctors automatically assume that everyone who complains of severe, chronic pain has nefarious motives? What gives them the right to play God with a person’s health and welfare? A person who has been their patient for 15 years? Yet because of a prejudicial policy, he suffers each and every day, his quality of life so impaired that he is often unable to enjoy his days.

The same thing applies to the state. In April 2016 over two-thirds of the Maine legislature voted to override two harm reduction bills vetoed by Governor Paul LePage ~ LD1552, a bill that would provide public funding for syringe exchange and expand syringe access, and LD 1547, legislation to allow access to the life-saving overdose antidote Narcan (naloxone) without a prescription, something Governor  LePage vehemently objected to. During a town meeting in Damariscotta last year LePage said:

“There comes a point in time where who is responsible for who. You know a shot of Narcan is $70 and the person who gets it doesn’t have to pay it back.”

So a state whose governor publicly implies that a human life is not worth $70 is the same state establishing narcotic prescribing guidelines?

With no doctor to help and pain that is severely impacting his life, my family member has decided to try medical marijuana  because it’s legal in Maine. As I researched cannabis I was surprised because it’s definitely a profitable business. You make an initial appointment with a doctor who is certified by the state to prescribe medical marijuana. Upon completion of the appointment, providing your medical condition is one that qualifies,  you will be issued a Medical Marijuana Card (usually tamper-proof). The first visit ranges from $150 to $300 and the annual recertification is about $50 less. Then there is the cost of the actual cannabis which can be approximately $300 a month.  My family member doesn’t want to smoke so will try a concentrate that he can add to a cup of tea. And of course, insurance doesn’t cover any of the costs whereas a prescription for Vicodin is $10.

So let’s recap. A senior citizen with a long, well-documented history of Lyme Disease and arthritis. Retired after 47 years in the workforce, 40 of them as a tractor-trailer driver. No history of drug or alcohol abuse. He didn’t take Vicodin four times daily because he didn’t want to develop a dependency plus the prescription said: “as needed”. Yet for not taking them when he didn’t need them or was driving, the hospital’s inane and unjust policy is forcing him to turn to an alternative source in an attempt to obtain some degree of pain relief. In doing so, he’ll be spending several hundred dollars a month of his limited retirement income; money that he could spend on enjoying his life instead.

Maine, like every other state, is seeing the tragedy of the nation’s prescription opioid and heroin epidemic but it is also seeing an increase in people with chronic pain, especially as baby boomers age. Chronic pain now affects more than a third of Americans yet as I have discovered, getting help from your physician, no matter how many years you’ve been a patient, is often impossible.

I will never go to that hospital for a procedure because of his experience. And should I develop a condition which causes me chronic pain, I’ll definitely seek help elsewhere because no one should be made to arbitrarily suffer like my family member; to have his treatment altered based on not taking as many pain pills as they think he should but rather, as prescribed. To be judged on the results of a single urine test as opposed to a long documented medical history and 15 years.

What a sad indictment against the medical profession. When did it lose humanity and compassion?

To My Friend ~ Suicide Is NOT The Answer *Profanity*…

To My Friend ~ Suicide Is NOT The Answer *Profanity*…

There IS a way out of that mindset and I’m going to tell you about it but first you must place your hand over your heart, can you feel it? That is called purpose. You’re alive for a reason so don’t ever give up.

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Which one do YOU choose?  Because I won’t lie, suicide is probably easier. Find a method, implement it, go to sleep ~ and die. No more battles, no more bullshit from therapists that overbook and overcharge. No more being a guinea pig for every new treatment modality Big Pharma cranks out. No more failed attempts to make your family understand that you’re in pain, your head is fucked up and you could use some support. No more angst because an employer denied your right under the ADA of 1990 and dumped you from a 17 year job. No more frustration from trying to get an idiotic bimbo at a government office to listen to you, do her fucking job and help you obtain justice for having your rights violated instead of taking the easy way out by convincing you it would be a long hard fight blah blah. Yep been there, done that. Collect your paycheck worthless clerk and get out of my face.

Because that’s what it often is ~ a lonely battle where no one seems to “get” it. Family doesn’t have time or energy for you when you’re in distress but oh boy! Don’t answer the phone when they call one day and they act as if you’ve drained their bank account and crashed their car. They just ooze the love. But ~ I don’t think it’s that they don’t love us but rather, they don’t understand. They expect us to be like them which we can’t do. The irony is, if they lived inside our head for a few days, they’d run and never look back.

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Yes killing ones self is probably akin to taking life’s low road. Do you know the road I speak of? The one that winds through dark tunnels and dense forests,  deprived of  light and warmth? It’s cold because of the lack of sun so you miss dew on a blade of grass, springs’ first crocus, a rabbit scampering away as he hears you approach. You miss all the moments both good and not so good of watching your child become their own person. One day your frustration at their attitude or laziness gives way and you see them almost as if for the first time; a productive adult that YOU molded. And though at times their apathy is annoying, they truly do love you. If you kill yourself you create a ripple effect that will remain with them for the rest of their lives. 

Because if you kill yourself, you’re also going to kill the people who love you. You’re going to kill the passion which drives you to do what you do so damn well. You’re going to allow the darkness to win and you’re stronger and braver than that.  If you kill yourself you’ll be giving in to the monsters of the dark who live to drag us into their world of darkness. We’ve both been there yet clawed our way out, sometimes by just a ragged nail or two. That says something ~ it says fuck you! I’m better and I’m more powerful than you. You might knock me down but I WILL get back up. Because I have a life and today is NOT your day to claim it.

In Sylvia Plath’s Unabridged Journal she wrote “I act and react, and suddenly I wonder, ‘Where is the girl that I was last year? Two years ago? What would she think of me now?”

We aren’t the same as we were last year or the year before. We’ve changed, taken steps both forward and backward. Some of the changes were society driven while others were by-products of mental health. Then there is the change because our employers tossed us aside like an old worn out sweater, to be replaced with a newer albeit less expensive one. And that my friend becomes you’re defining moment….do I let these steps, these changes, drag me to a place from which I can never return? Never open my eyes after a nights sleep? Never finish a project I’ve put my very essence into? Never see my child marry? Hold my first grandchild? Never make the difference and be the change I wanted to see happen?  

You are braver than you believe and you are stronger than you realize;  never, ever forget that. And know that although it may seem it now, you are NOT alone. Many of us have been sucked into the abyss, many have attempted suicide but thankfully were saved. Then many like my dear friend last April weren’t as fortunate and those of us who loved them will never fully  recover from their tragic deaths.

Yes there are choices but you must choose the right one. For to do otherwise would deny not only your loved ones (who like all families are  often a PIA) of sharing your life but it would deprive the world of the contributions you have to offer and the continuance of the good work you’ve started.

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Doctor Rant*******

Doctor Rant*******

A few months ago I posted about the problem honest people with severe chronic pain issues have getting pain medication when all other treatment modalities fail ~ simply because those who use/buy/swap/deal drugs illegally have made it nearly impossible to get any type of pain pills. I have chronic migraines. Actually, I have Intractable Migraine (duration of 72+ hours), PTH, Classic with Aura. I’ve had them since I was struck in the head with a baseball bat as a child. Having said that, when you have that type of pain from such an early age you develop a fairly high tolerance but only to a point. For the past several years,  I’ve been getting Botox for Migraine. It’s a series of needle pricks throughout your scalp, forehead, and back of the neck. For me, it was manna from heaven. The shots are given on a three-month schedule but if the doctor does them a day or two early, insurance rejects the claim.  My local neurologist gave notice in mid-August that his practice was closing because he accepted a position in Kentucky.  Problem is, he was closing in mid-September, just a few days before my Botox appointment so needless to say I didn’t get the injections. Made an appointment with a new neurologist but the first opening isn’t until December 2 AND he doesn’t start Botox till the second visit which won’t be until the end of January. That means that it will be almost seven months without Botox.

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On top of that, I have these visual issues which I just learned are caused by a large amount of scar tissue that formed on my corneas following cataract surgery in October 2015. I started having trouble seeing and saw the ophthalmologist in January. He said my eyes were still adjusting. Hmmm. I don’t even know why he did surgery in the first place as I wasn’t having a problem. But that onus is on me. I usually research the heck out of everything but I was super relaxed after the 4-year legal battle and blindly followed the doctor’s advice. He never told me that with cataract surgery I would lose my ability to read without glasses or that there were lenses that would eliminate the need for glasses at an extra cost. By February my vision had deteriorated to the point that the cheater glasses were no longer working so I had to buy a different number. I’m on my third pair now, each time getting a different number.

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Right after I had cataract surgery I could see distance however that didn’t last long. Hell, I can’t even see the floor anymore so have had many falls over a dog toy. Despite my pleas, the ophthalmologist couldn’t see me until the end of July which is insane! And worst of all, visual disturbances have always been a migraine trigger for me so it’s like a vicious circle. I’ve never gone to a concert specifically because of the lights. I used to have a friend take my kids to see their favorite performer when they were in Philadelphia for a concert.

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I use a dictating app or rely on Siri for typing or emails, stopped driving, knitting, reading, hiking and walking outside. I was hiking the AT last spring and summer! Seriously? This is NOT the type of life I envisioned for myself when the legal issue was over and I had my life back. Good news is ~ I can have the scar tissue removed via laser procedure called YAG. Bad news ~ not till December 6. Then when I go back for my first check up we’ll discuss contact lenses for near vision because I have to tell you, going from a lifetime of not wearing glasses for close up then overnight you’re unable to read a piece of paper or apply makeup is horrible. I would assume that as people age their vision progressively gets worse whereas mine was boom! Overnight.

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My primary care doctor knows me, knows I’m a trauma nurse, and knows about the abrupt closing of the neurology office. He also knows I tend to go for homeopathic remedies as opposed to Big Pharma but with severe migraines like mine, herbs, teas, vitamin combos simply don’t work. Do you think he would give me a small prescription for a pain medicine? No! He doesn’t “prescribe narcotics for headaches”.  Here asshole wants to have another look at the scar on my forehead from the baseball bat???  He told me to take Tylenol and I’ll get through “just fine” till I start the Botox injections again. I really want to ask “And you know this how?” I get the type of migraine that starts with a prodromal phase which lasts for about 30 minutes after which I enter the aura phase. Then the pain begins as the aura starts to fade. They’re one of the worst types of migraines. This is as close as I could find to demonstrate an aura when it appears.

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But pop two Tylenol and I’ll be “just fine”. Not when my head feels like this!

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Yet nearly every day I hear about another drug bust. Where do these weasels get the drugs from?

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At least on a positive note, I can look forward to possibly changing my eye color with contacts. Had a lot of fun doing that when I wore them intermittently before I moved here.   No more hazel eyes; I was rocking different shades of blue, a brown and a green. In this state however it was illegal to order them through the mail plus necessary to drive quite far to an optical shop so I gave up my eye color phase. Just had a thought! Perhaps mail order contacts are legal now because after all, they passed the law that enables people to shoot fireworks and firecrackers seven days a week and long after dark which I wrote about last summer.

Note to self: check into that

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Believe it or not, I started this post at 0330 because I was frustrated just lying there not being able to sleep due to my head. Then I picked at it from time to time as the day/evening progressed. Should have probably taken two Tylenol…