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?