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 work force 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 forced him. 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 seek 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 nor whom to turn to.
As I wrote in my original post, 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, or 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 Groshong Catheter implanted in his chest by a surgeon prior to discharge. Once home, he received IV antibiotics for several weeks via the port. He also had blood drawn several times a week because the antibiotics affect one’s liver enzymes. 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 OTR 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. Not once did he call out sick. His dedication and strong work ethic was beyond reproach.
Shortly after moving to Maine he became a patient of a rheumatologist and surprisingly, liked the doctor so much that I didn’t have to force him to go. 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 nearly 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 drastic lifestyle changes, his knees and hands continued to hurt and were steadily getting worse. 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 while other days taking none. He never took any if he was driving because even though they didn’t make him feel spacey, it was drilled in his head from years on the road that one never drives with a narcotic in their system. Even though he was often in pain, he still didn’t take Vicodin when we drove Sasha to the specialist, a 4 ~ 5 hour round trip. For anyone who isn’t familiar with my German Shepherd Sasha, she has a myriad of unique health issues that required frequent veterinary appointments and many specialized treatments. I used to joke that my Honda was on autopilot for Portland.
He went to the rheumatologist for his routine appointment in March 2016 and upon arrival was told they needed a urine sample. Since he’s occasionally had blood drawn by them he didn’t think anything of it. Upon 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 the drug related issues in society not surprising. Then in the beginning of April a nurse from the rheumatologist’s office called to say the test didn’t indicate Vicodin in his system so it would no longer be prescribed for him. Dumbfounded doesn’t even come close to describing my reaction while my family member, who never complains, simply said “That’s ok”. I called the office several times as I’m listed as someone they may discuss his case with yet no one returned my calls so I sent a certified letter. Finally the rheumatologist called. He told my family member that he wasn’t allowed to prescribe Vicodin based on the urine test, that it wasn’t his policy but rather that of the medical center whose umbrella he was under. He added that the hospital was working with the state to decrease narcotic prescriptions. He prescribed Tylenol #3 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 his chronic pain he is doing anything but. Yet he still doesn’t complain because that’s simply how he is. 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 in the Western Mountains. 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 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? Not every senior citizen is supplementing their income by selling some of their pain pills? Why do health care providers automatically assume that everyone who complains of severe pain has nefarious motives? What gives them the right to play God with a person’s health and welfare? A person they don’t really know; someone who has never used recreational drugs, doesn’t drink alcohol or been in trouble with the law. Yet because of their prejudicial policy, he suffers each and every day, his quality of life so impaired that he is often unable to enjoy his golden years.
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? Mind boggling.
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 initial 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 of Vicodin is $10.
So let’s examine what we have. 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 wouldn’t take it if going out (and remember the prescription said “as needed”). Yet for not taking them when he didn’t need them or was driving, the medical center’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 travel, concerts or weekend excursions.
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 this medical center for a procedure because of this 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. To be judged on the results of a single urine test as opposed to a long documented medial history.
What a sad indictment against the medical profession. When did it lose humanity and compassion?
