Until recently, I was that healthy self-sufficient citizen. I still live in what is considered to be the low end of middle class in this country. That is to say, I have a roof over my head, food in my stomach and some money in the bank. So my definition of wealth is a paycheck and a little tucked away.
Make no mistake, in spite of my recent health challenges, I feel blessed to be living here and know that compared to the vast majority of this world, my lifestyle is opulent and my health options must appear endless. Unfortunately, the latter isn’t exactly the case.
I have a genetic disorder called neurofibromatosis (NF). The 1 in 4,000 people born with this disorder can experience everything from disfigurement, to learning disabilities, to pain and/or paralysis. In fact, NF has such a wide variety of symptoms and degrees of severity, that if you put a group of 20 of us in a room you’d think we had 20 different diseases. The one commonality is that its’ course is unpredictable and it can be fatal. Although generally benign, the tumors that often accompany this disorder can “transmigrate” to malignancy. While they do grow on nerve endings, not all tumors cause discomfort. Regrettably, several tumors on my lumbar spine are inoperable and cause pain that can only be described as teeth rattling. This was also the case in 1995, with an operable tumor on my cervical spine, though the pain was felt elsewhere.
One side note: Neurofibromatosis is a disorder, not a disease. Pain however, IS a disease in and of itself when it's chronic due to disorders like mine.
When I had that surgery at age 40, I was in so much pain I was downing a bottle of aspirin every few days. I kept going to a chiropractor, too afraid to see a neurologist, which would have been the smart thing given my condition. When I finally broke down and had an MRI, my neurosurgeon commented that I must have a “high tolerance” for pain. I think I was just scared and in denial. But I was losing sensation on my right side and had no other choice.
He explained that if the tumor were seated on the nerve “like a grape” it would be easier to remove, though still a difficult surgery given the location of the tumor. Unfortunately, MRI’s don’t reveal that kind of information so he wouldn’t know until the surgery.
At that time, the culprit tumor was on C3, which is high on the cervical spine (the neck region, the same area Christopher Reeves injured occurred). He further explained that if the tumor were tangled up in the nerve, I would wake up a quadriplegic. And given the tumor’s rate of growth, if he did nothing, I would end up paralyzed for certain regardless of how the tumor was seated. Fortunately, he was able to remove it without causing serious damage, though it took three surgeries and caused both sensory and motor nerve damage, weakening my right side slightly. This time, the doctors won’t risk surgery due to the sheer number of tumors and the fact that they wouldn’t know which one is causing the pain. Since I have bladder and bowel control, they want to leave them alone.
Because of the challenges this kind of pain can bring, I have learned that chronic pain is a disease in and of itself and should be treated as such. However, doctors have been slow to recognize this, especially if they can find no cause for the pain. This is one reason the problem is under treated much of the time and why chronic pain is often referred to as an “invisible disease.” In my case they can see the cause but that doesn’t make treating the pain any easier.
The fear of a patient becoming addicted to strong narcotics, even for those on their deathbeds, has been well documented over the years. Though there have been a multitude of reports indicating that most people who use narcotics to treat chronic pain do not become psychologically addicted if and when treatment ceases, doctors are still reluctant to prescribe opiates (narcotics), the best treatment for certain types of chronic pain. And I proved it when they took me off methadone and put me on Fentynal patches. It was a horrible physical withdrawal, but I haven't craved it once. Not once.
It seems our nation’s “War on Drugs” policies are forcing doctors’ to stop prescribing the most effective drugs, such as OxyContin, in part because of the illegal trafficking of these and other pain killing substances. And of course, addiction means more illegal trafficking. However, several studies have shown that less than 1% of people using narcotics to treat chronic pain become addicted. When someone takes a narcotic to treat pain the vast majority do not get “high” from the experience. To under treat millions of people suffering from chronic pain because 1% might get addicted is indefensible to me. Using the government’s reasoning for denying or making access to these life savers difficult (I write “life savers” because the suicide rate among people in chronic pain is nine times higher than that of the general population), it would be far better to control alcohol and tobacco, since users of those substances die at a significantly greater rate than those of us in pain become addicted. Do some people who take drugs for pain get addicted? Yes, of course. 1%.
People first need to understand the difference between dependency and addiction. Am I dependent on my medication? Yes! Am I addicted? No, absolutely not. If a cure to my pain were discovered, I would not crave the drugs I take once they were safely out of my system. I might experience physical withdrawal if I’m not weaned off properly because yes, I am physically “addicted” if you want to call it that. But I am not psychologically addicted because I don’t take them to get high.
Sadly, doctors who use to treat chronic pain patients have begun shutting their doors, primarily because they are being hounded by the DEA to cease prescribing the only thing that works with some types of chronic pain: narcotics.
Every time I visit a pain site on the Internet, I read about another doctor who is forced into this tough decision. I don’t blame the doctors. It can cost over half a million dollars to defend oneself against our government’s blank check. The fact that your tax dollars are being spent on this should enrage you. Unfortunately, the people who need to stand up and fight against the kind of legislation that’s forcing this issue are also the people most vulnerable and least able to advocate for themselves.
This is not meant as an anti government treatise nor a “poor me” allegory. However, our legislators need to wake up to the plight of those in chronic pain.
Pain patients want the same thing everyone else wants — to lead a normal life, to contribute in some way, to love and be loved, to grow and be happy. This is one of the most difficult parts of being in chronic pain — knowing we are being denied the help that is available because of the “War on Drugs” and the DEA’s refusal to distinguish between patients and criminals. Can you imagine what would happen if an insulin dependent diabetic were suddenly denied their medication? Or a heart patient? I know it’s the class of drug at issue, but the drug is doing the same thing narcotics are doing — treating an illness. And illness called chronic pain.
Even more disturbing is the fact that this battle is trampling on the constitutional rights of millions of Americans. When frightened, people often willingly abandon their rights in the misguided belief that it will change things for the better.
To understand this, one need look no further than the new Privacy Act. Read the law carefully. If you’ve been to a doctor after the end of April 2003, you were asked to sign it, or should have been. I’ve been to doctor’s offices and watched patient after patient sign away their right to privacy, believing they are being protected. In reality, almost anyone now has access to your private medical records. It was designed for the DEA to be able to track who is taking what medications. This is not privacy; this is an invasion of privacy. There’s this little thing called a search warrant. If law enforcement suspects you of a crime, they use to need a judge to issue one of these so they can have access to your files.
I had a disagreement about it with a staff member at one doctor’s office and was told I was welcome to leave. The staff tired to convince me I didn't have to worry because I was signing “their” version of the law. The fact that people have stopped thinking for themselves is perhaps the scariest part. I was flabbergasted that they didn’t seem to understand they could write a nursery rhyme and have me sign it, but the law is the law. They didn’t seem to understand the doctor’s charts are now open for practically anyone to read, creating a major loss of privacy. Without even poking his head in the room let alone examining me, that doctor told the nurse “I was fine” and should just “go home.” I ended up being treated by another doctor for an infection I knew I had, but it was the doctor’s lucky day. I could have sued him for what he did, but due to my health, I must pick my battles and right now, my battle is dealing with the pain.
For me, even with strong pain medication, on bad days I can’t go out. On manageable days strangers wouldn’t know anything is wrong. I spend most of my time laying flat on my back, the only position that’s fairly comfortable.
NF tumors are somewhat pliable, and a centimeter one way or another determines my pain level. When they move and push on the nerves on and near my spine, I’m in agony. And I have no control over their movement.
Learning to live with an invisible disease, where people sometimes expect more than I can give is profoundly challenging. Fortunately for laptop computers, I can lie down and communicate with the world.
I take care of my personal needs, and most days I try to take short walks. I can also drive limited distances to do my marketing and visit nearby friends and family. Once in a while, I enjoy a spontaneous dinner or movie, though I must sit positioned for a quick exit if needed. The unpredictability of which time of day is worse than another is exasperating, and the isolation unbearable at times. Think of how “stir crazy” you feel when you are have the flu a day or two. Now multiply that by 7 days a week, for months and years on end.
Even though I have tumors that can be seen with an MRI, to the general public, I look fine. So if I’m feeling good and go out, and then my pain comes up unexpectedly as it often does, I need to explain what’s going on so someone doesn’t call the paramedics. My facial expressions and body language can be frightening when I’m in a lot of pain. When I’m trying to breath and get myself in a more comfortable position, explaining all this to strangers is challenging. I’ve also had to explain to family and friends that pain can look a lot like anger. Sometimes, people assume I’m mad about something when I’m really just in pain.
When my health began to deteriorate, I applied for Social Security Disability and was denied the first time. I discovered people wait years and never get approved regardless of how much medical documentation they may have. I was lucky and was approved the second time around, though the total waiting time was almost two years.
While awaiting that decision, I applied for DSHS (welfare) and was denied that the first time as well. It took a letter to the governor to change it. But who helps those who don’t have the wherewithal not to accept “no” for an answer?
Most people know that tax dollars earmarked for social security should have been protected. What few people realize is that social security (retirement) is but one arm of the Social Security Administration (SSA). It is also there for survivors (spouses and dependents of deceased income earners) and for people who become disabled. But when someone does become disabled and applies for this coverage, it often feels like we are being accused of having our hands in the cookie jar. I write “we” because I heard this story over and over again from other people in my position. It can feel like the system is designed to encourage people to give up. While there will always be a small portion of people trying to somehow take advantage, most are sincere and in need of this safety net.
I call it a safety net because that is what it was meant to be. Personally, I worked and paid into the system for 32 years before becoming ill. Yet, the red tape is miles long and despite what the uninitiated might think, even with finding every possible way to cut expenses to the bone, the stipend is unlivable without outside help. I am fortunate my family is an option for now. I asked a social worker at DSHS how people manage and she looked me in the eye and, without a trace of irony, replied, “They live under bridges.”
I certainly don’t expect my government to support me in a style better than what I was accustomed to prior to becoming ill, but there must be something between easy street and on the street. To be forced to grovel for the minimum of comforts while ill and living in the richest country in the world is mind boggling to me. And I am aware that I live in one of the few countries with this safety net. However, we are asked to do to “prove” ourselves goes way over the top, and in the end, is determined by someone at the SSA who may or may not be medically qualified to make that determination.
For example, I was told by three different people at the SSA “I have never seen anyone with NF win a case and I probably never will.” It is impossible to convey how horrifying that kind of negative talk is when you are ill and in so much pain it’s hard to get out of bed in the morning. I understand their job is to “weed out” people who are lying, but my application was in front of their faces along with my medical documentation. Still, these are the “gatekeepers” are there job is to protect the money.
Most people have dealt with a claims adjuster at one time or another, whether it was due to a car accident, storm damage, or having been vandalized. You make a claim, and the claims adjusters determine responsibility and either cut the check or protect the money. A “gatekeeper” is the same thing. You’re claiming you need this help, and they decide if you qualify.
Due to the hoops you must jump through, dealing with this unfriendly, unyielding piece of government machinery can feel very personal. Still, you must persist, while also finding ways to hold onto your dignity. For example, when I was finally approved for welfare, I was given something that looks like a bankcard (called EBT, these cards hold both cash and food stamp allowances for the month). Once, an untrained cashier call for the manager by yelling across the store, “How do these welfare cards work again?” Now, people can wax philosophically over dinner with friends about how there’s no need to feel embarrassed in that situation, but like anything else, you don’t know how you’ll feel until you’re behind the eight ball.
Often, a cashier would slowly demonstrate how to slide the card through the debit card box, clearly under the impression I needed help. Interesting, isn’t it? When was the last time a cashier showed you how to use your debit card? Not ask, show. The assumptions people make about welfare recipients haven’t changed much over the years: She must be lazy, stupid or both. He’s taking my money. She looks healthy enough to me. Why can’t he just get a job? Yes, we all make assumptions about other people all the time. It’s just that welfare recipients have been accused of having a sense of entitlement, yet their accusers feel entitled to make assumptions about them.
The pharmacist I used prior to needing public assistance cheerfully accepted my cash, making friendly conversation in the process.
When I showed him my medical coupon for welfare, it was as if a switch had been flipped. Twice, he made a unilateral decision not to fill my prescriptions stating, “It’s unusual for these two things to be ordered together” and “It’s too soon to refill it.” The latter decision forced me to wait in pain for my doctor to call back and verbally confirm his written order. These were the same drugs I use to pay for with cash, picked up within my normal time interval. Nothing had changed, except the way I paid for it. I can understand that the required paperwork with welfare patients makes the pharmacist more culpable with regard to narcotics. However, I’m not convinced his concerns were about wrong doing since he was doing nothing wrong. He just changed his mind about who I was and why I needed the drugs.
Once accepted on disability, I was no longer eligible for welfare and discovered that there are no health care benefits for disability recipients. While it may not be a forgone conclusion that all disability recipients need health care benefits, it’s a pretty good bet. So when you are at your worst, when you feel too ill to do anything, you are forced to do thesis-type research and stretch yourself beyond what you did when you were well and working. What you should be doing, is figuring out ways to feel better, maybe even find a cure for your illness. But you are afforded no such luxury.
After much searching, I was accepted to a state insurance program for low-income people but had to wait an additional six months for activation because there is a limit to how many people can participate at once. Shortly after, I was informed I needed to acquire the methadone I take for pain at a methadone clinic, an hour drive too difficult for me to manage. Apparently, like the pharmacist, my new insurance carrier assumed I was a drug addict even though my records clearly depict my disease and the treatment I was receiving. After talking with three different people over a period of four hours, they acquiesced and agreed to let me pick it up at my pharmacy.
Two months later, I lost this inadequate (but affordable) insurance because I became Medicare eligible, something that happens automatically 24 months after disability benefits begin. This information was indeed an unpleasant surprise.
Worse, it almost cost me losing health care coverage. I discovered (nearly too late) that you are allowed other insurance, but must acquire it before becoming Medicare eligible. And Medicare, as anyone on it will tell you, is not nearly adequate if you have the audacity to get sick.
The only policies for which I now qualify have yearly prescription limits totaling just slightly more then my monthly drug bill. And my monthly drug bill is only slightly lower then my disability checks.
The greed and abuse of pharmaceutical companies in this country, let alone their questionable marketing techniques, is profoundly disgraceful. Until special interest groups become a thing of the past, I’m afraid there is little hope for reform. In the meantime, the senseless suffering of those in need continues. Canada is a slightly more affordable option, but there are certain drugs you can’t get or they aren’t allowed to mail, and it’s too difficult for me to drive. And Congress, once again working with the pharmaceutical companies in their back pocket, is looking for a way to squash this option.
The non-stop barrage of problems not related to my medical condition makes it nearly impossible to concentrate on finding ways to feel better, or possibly get well. Instead, I spend my time putting out fires and searching for everything from adequate insurance to government programs that might help. I’m aware that everyone, not just sick people, must deal with the “gnats” in life, the things that breakdown. Whether it’s the red tape of bureaucracies, a fender-bender or an inaccurate charge on a credit card, it’s all part of life. Yes, everyone must deal with those things. Not everyone is sick or in agonizing pain.
Once, I received a phone call from my local social security office verifying my address a full 18 months after a letter came back to them because they had addressed it incorrectly. Eighteen months. The letter was a request for information that I never had a chance to give them because I never got the request.
I had received lots of mail from them during that same time period so it was clearly a clerical error, not picked up eighteen months. In the private sector, this kind of error (not catching it for almost two years) would possibly have resulted in someone getting reprimanded.
But in the public sector, no one notices or no one cares and as a result, people fall through the cracks at an alarming rate. For me, the error resulted in not qualifying for a money saving program because I “hadn’t filled in the request in a timely fashion.” It would have been laughable if it hadn’t been so costly. But many people just slip away when mistakes like that happen. And that is not acceptable, at least to me.
When you are ill, you must be more vigilant about not letting the gnats destroy you, especially if you are fighting alone. If you have no one to help you make the calls, write the letters and correct the mistakes, you best steel yourself against a bureaucracy that wants you to give up. And make no mistake that is exactly what they want you to do. When you are least able to advocate for yourself, when you are at your worst physically, mentally and emotionally, that’s when you are asked to perform ridiculous feats to prove yourself.
Recognizing the difference between being angry and being heard has been especially challenging. While finding your power and using it appropriately is important, so is learning how to center yourself.
As we discovered from nine-eleven, we have little or no control over anything. Every day in this country, thousands of people are suddenly faced with the decisions I had to make. I know it isn’t as sensational as nine-eleven, but it is as every bit as devastating. And with no telethons, no emotional support, no point person to say, “Here’s what you do,” it’s re-inventing the wheel with each new person it touches.
Even though the SSA has an Internet site designed to help individuals through the application process, it is confusing to those who don’t know what they are doing, and it doesn’t cover the auxiliary issues, such as losing your health insurance benefits through DSHS, finding low cost prescription drug coverage, money saving offers for low income people from your local phone and utilities companies, effective ways to deal with friends, family and loved ones and many other concerns that arise for the newly disabled.
The world expects you to move on, even if you are unprepared to do so. It’s too uncomfortable to be around someone who is ill and in need. Giving to charity is easy because writing a check is impersonal. Giving of yourself is more difficult because it demands that you look, listen and actually hear someone’s story.
And no matter how much they love you, even family and friends grow weary of illness. It’s a demanding, tiresome experience and leaves people feeling helpless, especially when there’s no cure. I believe that somewhere along the line, we started confusing “co-dependency” with helping someone in need. Certainly, a sick person should do the most they can for as long as they can. But no one knows the upper limit better than the sick person. “When you have your health, you have everything,” becomes much more then a familiar axiom when you are ill, especially when it is chronic or incurable.
The twisted truth in all this is that when I am in a rage about my situation, the doctors, the pills, or the system that has let me down, that is when I have flashes of my own power. These flashes usually include a spurt of euphoria, the feeling that everything is going to be all right. The notion that right now, right this moment, I could die or I could live, but either way, it’s going to be okay. But these moments are in no way the norm. The norm is hoping that the effects of the painkillers last from one dose to the next. It’s hoping that they work the way they are designed to, and that I will remember to take the next dose. The joke however, is that if I’m feeling okay, I sometimes forget to take the next dose or convince myself I don’t need it. Then the pain is twice as bad when it comes. And it will come.
Unfortunately, because we’re such a results driven society, many people’s first reaction when they hear that someone is ill is to “figure out” a way to “fix” it. Sometimes, all the sick person wants is an ear, not answers. But few people know how to let a sick person just be. Strong or not. Happy or not. In pain or not. That is the way, of course, we should all live our lives.
But when you lose your health and your wealth, there is no other choice. And you better believe life turns on a dime. Not even.
So take advantage of legs that can walk, run and jump, arms that can lift and hug, toes that can wiggle, fingers that can write, and point, eyes that can see, ears that can hear and all the rest of it. Use it. Enjoy it. If you believe in a higher power, give thanks for it. Pray, if you want, to always have it, but try not to feel cheated if you lose it. And remember your prayers are probably answered. They just aren’t always the answers you wanted.