On A Dime

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On A Dime

Name: bgsherri1
Email: bgsherri@earthlink.net
Date: 09 Oct 2002
Time: 13:44:38
Remote Name: user-2ini9fp.dialup.mindspring.com

Story

I’ve been living civics’ lesson in what it means to live in the United States and lose two of the things this country values deeply: health and wealth. Wanting good health for ourselves and the people we love is understandable. Most reasonable people even wish good health on strangers. While I assume the latter is sincere and not fueled by the financial burden it otherwise places on all of us, it does indeed cost money to be sick. Sometimes it cost a lot of money. Money, some would argue, that could be diverted elsewhere. Certainly, individually, countless Americans give immeasurable amounts of themselves and their money wherever there is need. And while it may be reasonable for our socio-economic system to admire and the reward the healthy, self-sufficient citizen, the lack of workable, reliable safety nets for our nation’s truly vulnerable is nothing less then shameful. For all the political ballyhooing, America’s health care policy has been and still is, “Don’t get sick.”

Until recently, I was the healthy self-sufficient citizen. I have always lived in what is considered to be the low end of middle class in this country. That is to say I have had 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 most 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 disease 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 being that it’s 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 new tumors on my lumbar spine are inoperable and cause pain that can only be described as teeth rattling.

When I had my first surgery at age 40, I was in so much that I was downing a bottle of aspirin every few days. One might say I was in serious denial. I kept seeing a chiropractor, too afraid to see a neurologist, which would have been the smart thing, given my condition. When I finally broke down and went for an MRI, my doctor commented that I must have a “high tolerance” for pain. He explained that if the tumor was sitting on the nerve “like a grape” it would be easier to remove, though still a difficult surgery, given he’d be working on the spine. 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, if he did nothing, I would end up paralyzed for certain, regardless of how the tumor was seated.

Fortunately for me, he was able to remove it without causing serious damage, though it took three surgeries and did cause both sensory and motor nerve damage, weakening my right side slightly. Now, because of the tumors on my lumbar spine, the pain shoots down both legs and is truly agonizing a good deal of the time. Since they are inoperable this time, I have been learning to “just live with it”.

Because of the challenges this kind of pain can bring, I have awakened to the fact 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 known cause. This one of the reasons why the problem is under treated much of the time. In my case they can “see” the cause, but that doesn’t make treating the pain any less difficult. The fear of a patient becoming addicted to strong narcotics, even for those on their deathbeds, has been well documented. Even though there have been a multitude of reports indicating that 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, the best treatment for certain types of chronic pain.

Why? Well, in part, the government has been making it difficult for doctors to prescribe these types of drugs, due to the “War on Drugs.” Prescriptions for OxyContin, the most popular treatment, are down because of the misuse by drug addicts and of course, illegal distribution. But the fact remains, less then 1% of people using narcotics to treat chronic pain get addicted. I was on heavy narcotics after my surgeries and had no problem when I went off the medication. To under treat the millions of people suffering from chronic pain because 1% might get addicted is so unthinkable the analogies are endless. Using the government’s reasoning for denying or making access to these life savers difficult, it would be far better to control alcohol and tobacco, since users of those substances die at a far greater rate than those of us in pain become addicted. If ever there was a treatise for the legalization of certain drugs, like marijuana, the under treatment of pain patients, who number in the millions, would be it. Or how about making cars illegal? Far more people die in car accidents each year (many alcohol related) than died in the Vietnam War. And the list goes on and on.

Even with strong pain medication, on bad days I can’t go out. On manageable days strangers wouldn’t know anything is wrong. Still, 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.

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 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, although I must sit positioned for a quick exit if needed. The unpredictability of which time of day is worse than another is exasperating. And learning to live with an “invisible disease,” where people sometimes expect more than I can give has been challenging. However, with the help of family, good friends and a therapist, I am growing accustomed to my new lifestyle and most days, count myself among the lucky.

When my health first began to deteriorate, I applied for social security disability and was denied the first time. I discovered people sometimes wait years and never get approved, regardless of how much medical documentation they have. We’ve all heard those horror stories. I was lucky and was approved after my first appeal. While awaiting that decision, I applied for DSHS (welfare). I was denied that the first time as well. It took a letter to the governor before action was taken. 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, this 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.”

This unfriendly, unyielding piece of government machinery often feels like it’s designed to induce you to give up. But you must persist, while also finding ways to hold onto your dignity. For example, while welfare recipients are given something that looks like a bankcard (called EBT, these cards hold both cash and food stamp allowances for the month) in reality, they work quite differently. The cash and food stamp amounts are in separate accounts so one must verbally tell a cashier you’re an EBT customer before the purchases are rung up. Non-food items such as toilet paper are drawn from the cash account.

This is not the same as being asked if you are using a credit or debit card. I once had an untrained cashier call for the manager by yelling across the store, “How do these welfare cards work again?” Now, people who mean well 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 public assistance cheerfully accepted my cash, making friendly conversation in the process. When I showed him my medical coupon for welfare, everything changed. 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. 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. 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’m taking 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 began. I’m allowed other insurance, but I had to acquire it before I became Medicare eligible because they wouldn’t accept me after. 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, which total less then my monthly drug bill. And my monthly drug bill is only slightly lower then my disabilities check. 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 I can’t get my narcotics or the drug that requires refrigeration through the mail and it’s too difficult for me to drive there.

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.

If you’re 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. 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 feats even well people would have trouble performing.

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.

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 God, 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.

((((((((((((((((((((((((((((((((((((((((((((((())))))))))))))))))))))))))))))))))))))))))))))))))))

Feel free to contact me at bgsherri@earthlink.net for comments on this article or information about my ebook “The Secret to Getting Disability Benefits”

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Name: ayfcmv
Email: ahvdcj@pbooqj.com
Date: 16 Jun 2008
Time: 10:47:00
Remote Name: 77.92.88.2

On A Dime

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