Tag Archives: healthcare

Just Add It To The List

The life of someone with a chronic illness is not easy. Not only do we have to live with the cards we are dealt, but we are constantly bombarded with new ones. Every time a new symptom pops up in our lives, we have to question it: Is it caused by the tremendous stress we are under? Is it a new symptom to a current illness? Is our illness getting worse? Is it, Heaven forbid, a NEW illness?

The sad truth is that those of us with a chronic illness -like fibromyalgia or the plethora of autoimmune diseases out there- are susceptible to developing other illnesses. We can lose track of all the diagnostic labels thrown at us by well-meaning doctors. It is a dirty secret in the fibromyalgia community that none of us have just fibromyalgia. If I counted all my illnesses using my fingers, I would easily need both hands. Now image trying to take medications for all of those! I am lucky enough to have found medications that treat multiple symptoms and illnesses.

Recently, I succumbed to family pressure to jump down the rabbit hole of medical tests yet again. After enduring so many tests in the past with little to no helpful results in the end, I was not eager to go through them again. However, my symptoms were not getting any better and those who care for me were very worried. For three years I was losing weight at a steady rate without intentionally changing anything I was eating or doing. I would have flare ups of symptoms for discreet amounts of time – e.g., nausea, vomiting, abdominal pain, bloating, inability/desire to eat, feeling full quickly.

I started going to a GI doctor at a prestigious hospital hoping she could figure out the problem. If anyone ever complains that socialized healthcare in Canada or the UK is slow, they obviously have never tried to be diagnosed in the US. Unless you are in critical condition (i.e., dying), the process can be painfully slow. It can take up to three months to get an initial appointment with a specialist. Then, another month to get in for a test and another month to see the doctor again. If your tests come back normal -like mine do- this goes on and on. After almost eight months, I still have no official diagnosis but have dished out the overwhelming sum of almost $1000. How does one pay that bill on disability?

I was so distraught over the last test coming back normal that I called my doctor. I was upset and discouraged. I honestly did not see the point in going through more tests. I was finally on an anti-nausea medicine that helped enough to stabilize my weight. I was to the point where I was just going to suck it up and suffer through my debilitating flare ups. I was already on disability. My prospects of ever working full-time again were slim to none. So what if I was in more pain and more disabled than before? What difference does it make? It isn’t like they give you more money the more disabled you are. There is no prize for being the “disabled-est.”

I would like to congratulate my doctor for not giving up on me. She is also the type of doctor who doesn’t blindly follow tests. She knows they are not always correct. She knows that they can be normal at times even when you are really sick. She knows that if I am not in a flare up those omnipotent tests are not always omnipotent.

She came up with a working diagnosis – gastroparesis. It basically means that during flare ups, my stomach forgets to digest food so it just sits there for hours and hours and hours. I can vomit my dinner six hours later. That, my readers, is not normal! Instead of waiting for a test to comeback positive, she prescribed medication for it.Unfortunately, the medication does not always work and has a list of permanent side effects. Those are side effects that do not go away even if I stop taking the medication. I am not sure I want that added to my already complicated life. So what does that leave me? You guessed it! I need to suck it up and live with it…

Pain Specialists and Their Lack of Training

I recently came to the realization, through the help of some well-informed friends, that there is no governing body in the world of medicine that officially endorses so-called Pain Specialists. Anyone can add that misnomer to their credentials after the most basic of training in the non-existent specialty. Since there is no American Board of Pain Management to oversee training and licensing, patients are left to the mercy of the individual doctor’s educational pursuits. There is no easy way for patients to evaluate the experience or training their doctors have received. There are no standards for pain management that patients can rely on during their appointments. If you have every been in pain, especially chronic pain, this is a very real and scary situation.

Only three specialty boards have a sub-specialty in Pain Management –  Anesthesiology, Physical Medicine and Rehabilitation, and Psychiatry and Neurology. They all use the same certification material and test that was developed by the American Board of Anesthesiology dated 2010. However, it is safe to assume that they approach pain management from their own specialty’s perspective. Anesthesiologists will be the first to recommend epidurals while psychiatrist will recommend therapy or antidepressants, and specialists in physical medicine and rehabilitation will recommend exercises and hot/cold therapy. A lot of good research has been done on the different types of pain, pain management therapies, and specific pain-related diseases and disorders in the past four years. I find it disheartening that the educational material might not be keeping up with the progress being made. Also, what exactly are the other doctors learning about pain and pain management? The single chapter in their med school textbook? Every doctor will need to treat patients in pain. I can guarantee that. Pain management should be a required course for all medical students. They should also be required to do a rotation in a reputable pain clinic before graduating.

Now let us discuss pain clinics. They are not regulated. They are not required to have a licensed medical doctor on the premises. I have seen some where a nurse practitioner runs it. There is a growing trend among chiropractors to jump on the pain management bandwagon and call their practices pain clinics too. All too often, pain clinics focus on one single, solitary treatment for a patient’s pain – regardless of the causes. In my eyes, the designation of pain clinic should only apply to a practice that actually takes a multidisciplinary approach to pain management. That means they have a staff who specialize in a variety of pain management approaches – this can include massage therapy, spinal injections, different exercise options, stress management, medication management, trigger point injections, acupuncture, chiropractic manipulation. Pain is too common a condition for our healthcare system to ignore in this way.

Healthcare in New Jersey – Fail First

The state of New Jersey still allows healthcare providers to override orders from doctors. Despite lacking a medical degree, insurance companies can dictate to doctors what medications to use on patients first. The insurance companies actually have lists of medications for certain medical conditions (which for some reason usually are chronic pain conditions). These lists are generated based on profits and losses. They are based on financial reasons. They are based on closed-door deals the insurance companies have with different pharmaceutical companies. The one thing that is NEVER take into consideration when generating these lists is what is best for the the individual patients.

You might be thinking what’s the big deal. So a patient tries one or two medications first. Maybe those will work; maybe they won’t. However, think about the current healthcare insurance environment. People are shopping around for the best deals. That means people can be switching plans and companies on a yearly basis. Patients would have to prove EVERY TIME THEY CHANGE PLANS that they have already tried their new healthcare insurance’s approved medications and failed to receive relief from them. We all know the red tape and bureaucracy that exist in large companies. It can take weeks or months to finally get approval to fill a prescription that the patient has had for years. If it is a medication taken daily, the risk of withdrawal is not only a potential side effect of Step Therapy ( also known as Fail First), it is a given. Who will care for a patient going threw withdrawal? The Emergency Rooms. It is far more expensive to go to an Emergency Room that to simply be allowed to take a medication the doctor has been prescribing for months or years.

The other problem with this system is that it supersedes the doctor’s medical opinion with the healthcare company’s financial opinion. The doctor supposedly has years of training and continuing education to back up his or her recommendations. What does the insurance company have? A handshake and price cut from their preferred supplier.

There is currently a bill winding its way through the New Jersey Legislature. It was introduced on June 18th, 2012. Where is it now? It is lounging out with the Senate Budget and Appropriations Committee. It has not even been mentioned since January 6th of this year. How long does it take to provide needed relief to thousands of New Jersey citizens?

I challenge the elected officials of New Jersey to dare to do something great.

Disappointed in America

As an American citizen, I am disappointed in our federal government. There are no words descriptive enough to tell you just how disappointed I am. Congress was on the verge of greatness in December, but they wasted it. Instead of becoming legends in American politics, they took the cowards way out. They had the power, and still do, to make significant changes in this country for everyone – particularly those of us who depend on government “handouts” (and let’s face it, we all do in some form or other). Whether it be Medicaid, Medicare, Social Security, vital research done by the National Institute for Health or National Institute for Mental Health, all of us with chronic illnesses rely on the government to lead the way for making our lives better. Our elected leaders have the power to improve our lives through the bills they pass in Congress. They have the power to stimulate the economy and lighten the burden on those less fortunate. They have the power to improve healthcare for the disabled, the elderly, and children. They could do so much for this country, but they don’t. They refuse to work together. They cater to the lobbyists and big businesses. They lose sight of what their true purpose is in Washington, DC. I read somewhere that certain members of Congress have said they will oppose any bill that could make the President look good. The number of bills that have been passed (or even voted on) in the past 2 years is about half the normal number of bills Congress votes on. This is a disgrace! Our political culture is a reflection of the declining care we provide one another. It is a reflection of our society’s focus on the bottom line instead of helping people. Shame on you, Congress, for choosing a short-term bandaid solution over REAL change in our country. Shame on you for forgetting the real reason you were elected. Shame on you for letting America down. This type of politics can only lead to America’s ruin…