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?

My Eyes……

My Eyes……

I don’t even know where to begin. I called the specialty practice on October 6 (the day I fell in my vet’s parking lot) and after two weeks they called back and gave me an appointment to see an optometrist on November 1. She said I had a lot of scar tissue on the corneas and recommended they be removed by a laser procedure called a YAG. She offered to RX me glasses then but I said I’d wait for the YAG as it might possibly change my distance vision. She also highly recommended Restasis for dry eyes, a problem I have. She said they would set me up with Dr. Garvey, an ophthalmologist within the practice for the YAG. The receptionist gave me an appointment for December 6.

No one ever said it was for a meet and greet! Not to mention that this doctor was obviously in a hurry. I told her I haven’t been able to drive for  months because I don’t want to endanger  other drivers. Yet less than 15 minutes later she told me when I come back for the YAG, come early in the day so I have time for everything to wear off before I drive home. I reminded her I gave up driving several months ago. Then she said, “Oh you must take public transportation”. I debated whether I should smack her then or wait till later because when she initially greeted me she asked where Rangeley was and I told her it was a 2.5 hour drive one way. I mentioned the Restasis and she had nothing positive to say about it at all and discouraged it’s use. She told me the scar tissue was minimal and shouldn’t really be affecting my vision. Honest to God I sat on my hands at that point. She said she would start with the right eye then I would come back for the left. I told her I had previously had punctul plugs which were like manna from heaven (small inserts that go into lower tear duct thus keeping moisture in and easing the dryness of eyes). I told her the first ones that were put in came out within a week so the next pair were buried deep. Told her that were like manna from heaven for over a year until I had sinus surgery in January 2015 and the blood that forcibly comes out from your tear ducts must have dislodged them. She went to see if they had any (God in a huge 4 level multi practitioner practice like that why wouldn’t they???)  I heard her tell the tech in the hallway “I know I know I’ll be right there. I’m hurrying”. She came back in, inserted the plugs (which looked awfully small) and told me the left one was “probably going to come out”. I agreed and told her it felt like it would (not my first punctal plug rodeo). She flew off. I went to the receptionist who gave me an appointment for January 31. I told her the punctul plug was already dislodging and she said “Call me if it does” It was gone by the time we got home and the right one came out about 9am today. I called the receptionist, left a voice mail at 10:30am but never heard back. Then I decided to call the optometrist I’d seen in the practice on November 1. Figured since they make you wait months for appointments I’d make mine now. Left a voice mail there as well. A girl called me back about 4pm. She told me that I couldn’t make the appointment until I had the YAG procedure (a direct contradiction of what the optometrist had told me). Well at the rate they book I won’t have the second YAG until February and be seen for glasses in March so why couldn’t I make an appointment now to cut down the wait time?  She said the optometrists receptionist was off today but she’s leave a message for her to call me. $20 says she doesn’t. Then she made a huge mistake. She told me people my age have visual issues and it’s part of the aging process. I JUST TURNED 50 IN NOVEMBER!!! She said “I know how you feel” I told her not to patronize me as she had no idea how I felt. That all this is because I lost my glasses while hiking the Appalachian Trail; that I had zero difficulty seeing prior to that incident and that I’d never worn glasses for reading but now I cannot even see the floor in my own house. So unless she REALLY knows how someone feels as an advanced practice healthcare professional I recommend she refrain from condescending remarks.

I am so stressed over this that I’m grinding my teeth so badly during the night that I’ve destroyed my custom made bite guard. Now I think I’ve damaged the root of a tooth because it hurts like hell. Had this happen once before and had to have  dental implants. I’ve gained 30# from inactivity and rarely leave the house for fear of falling. If I could I would sue my former ophthalmologist of 10 years but the laws are very limited in Maine. I had a two part hysterectomy  for what was really a kidney stone and there was nothing I could do. Partial hysterectomy in January and full one three months later in April. I woke up in Recovery Room with the same pain. I lived with it until October when a doctor who was merely a friend asked why I always looked gray. After having a meltdown in front of him he said “I’ll order you a STAT IVP (test) for tomorrow morning. By the time I got home from the hospital there was a message from him asking that I call ASAP. Turns out I had the mother lode of kidney stones and they had to go in surgically from my back to remove it.

This sucks and now I probably need $$$ dental work.  The only thing I’m sure of is I am NOT having any procedures done by the doctor I saw yesterday. If she cannot pay attention to what I’m saying then she’s not getting within 10 feet of my eyes.

Love,

She Who Needs A Walker because I’m so freaking old and decrepit. Yet I banged out the highest mountain in this state , Mount Katahdin, in less than a half day. And THAT was  my starting point! After that I entered and completed the 100 Mile Wilderness. Oh but wait! I could still see then.

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…

 

 

 

Finally! Answers To My Visual Problem

Finally! Answers To My Visual Problem

I’m so daft I can’t find the post I did about not being able to see following eye surgery a tad over one year ago. Let me preface this post by saying the reason I don’t read and comment more on blogs I follow is I can barely read. I have cheater glasses in every room of my house because after my eye surgery last October I completely lost my ability to read or do anything close without glasses. If the &%$#* ophthalmologist had told me this in advance I never would have gone through with the surgery (which I just found out I didn’t need). I can’t use my iPad nor my iPhone unless I tell my buddy Siri what I want for the simple reason I can’t see. I have the font on my Mac so huge one would think I was 90. That’s a pain in itself because it’s so big that I have to continuously scroll right and left just to read a page. I think as some people hit their 40’s they gradually lose their near vision; finding themselves looking harder, squinting perhaps. With me it was instant. Bam!  As I wrote in the post I can’t find, the visual problems have worsened. The glasses the ophthalmologist RX for me in December never worked (progressive lenses). His snotty staff tried to say it was because I didn’t know how to “look out of” progressive lenses. Gee, I’ve been wearing them since 1989 as I needed them for distance and the middle area. Never wore them to knit, read, write on computer or cook. My efforts to get an appointment with the ophthalmologist fell on deaf ears because in March when I insisted on seeing him they booked me at the end of July. That didn’t sit well with me because I’ve been gong to him since he opened his practice here which is at least 10 years. Even though I told his staff I was falling over stones outside, dog toys inside, and a few times over parking bump thingys in parking lots they wouldn’t budge. Told them I could no longer drive or hike with my dogs, had increased headaches but they wouldn’t budge. If you read my original post you will recall that I took the RX glasses to his office along with a nicely worded letter listing everything that was happening. The secretary acted like I was an axe murderer when I asked that she sign a copy of the letter indicating she had received the glasses. Glad I recorded the whole encounter. That got me nowhere. Then I thought perhaps his staff (which I honestly never liked) didn’t tell him so I wrote a second letter and spent $19 to send it certified with restricted delivery. He signed for it and a few days later I received a handwritten note from the office manager saying if I didn’t pay for the glasses they would turn me over to a collection agency and by the way, they no longer wanted me as a patient. Like I would ever go back. Screw you lady.

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Meanwhile back at the farm I have to keep buying different numbered cheater glasses. I also see large halos around lights. On October 6 I fell extremely hard in my vet’s parking lot because I didn’t see an errant stone (this is the country so stones/rocks everywhere). That did it! While he was doing her acupuncture  I burst into tears. He told me about the multi practitioner eye center he goes to which like everything else is a two-hour drive one way. Yesterday was my appointment and before the doctor even dilated my eyes she could see the problem; my corneas are covered with scar tissue that developed from the surgery. If the original surgeon had just fit me in instead of making me wait an unrealistic four months the problem could have been fixed and I wouldn’t have had my quality of life go down the tubes. Now my biggest problem is that the new practice (a five floor building) can’t fit me in until December 2. A month so I guess that’s not to terribly bad. The procedure to fix my problem is simple and done with laser. Even the new doctor asked why the original doctor didn’t see me sooner which surprised me as they usually stick together. I was tempted to say because he’s an asshole but instead said “I don’t know”.

As for his office turning me over to collection go ahead.  I’m tired of people bullying me and I’ve kept phone bills that show all the times I’ve called him, receipts for all the visits to his optometry department plus documented my falls and everything else. So bring it on…

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