Tag Archives: doctors

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…

Broken Health: Status of Healthcare in America

It is with a sad heart I report the status of the healthcare system in America as broken and with no hope in sight. When the Affordable Care Act was passed into law (and survived numerous attempts to repeal or severely limit it), I was excited. Finally! Everyone now has the opportunity to have healthcare coverage. We are finally moving towards universal healthcare like EVERY OTHER DEVELOPED COUNTRY IN THE WORLD!!!

But I was wrong! I had been misled. It is possible to have health insurance and still not be able to afford to go to the doctor and/or afford testing ordered by your doctor. Sad, but true… With copays to see specialists usually set at $50 per visit, who can afford to go? And when a test is ordered, no one can give a definitive price for it. I know one woman who thought she was being smart by shopping around for a cheaper MRI. She went to a specific facility because they quoted her the best price under her insurance. Guess what? The final price billed to her insurance company and then to her was significantly higher that what she was quoted. Upon questioning the facility, they said there were other charges applicable on top of the simple price for an MRI. Of course, they failed to mention those extras when she was shopping around. There is no system of accountability when this happens. No other business in this country could get away with blatantly irresponsible behavior. There is no governing body responsible for ensuring that patients and health insurance companies are not being bilked by providers. There are serious consequences to this lack of oversight.

I briefly knew a woman I met through my advocacy efforts. We talked during monthly conference calls and on Facebook. This past May, I got the opportunity to meet her in person at the Caterpillar Walk in New York City to raise awareness and funds for fibromyalgia. For a few short months, this free-spirited woman suffered from debilitating nausea, vomiting, and other gastrointestinal problems (on top of her fibromyalgia and other chronic health issues). Because of the ACA, she was able to afford health insurance and was finally diagnosed with clostridium difficile colitis. WebMD defines this as:

bacteria that can cause swelling and irritation of the large intestine, or colon. This inflammation, known as colitis, can cause diarrhea, fever, and abdominal cramps.

It is a completely treatable illness. There is no morally acceptable reason for an insurance company to deny treatment coverage – but hers did. She could not afford the inpatient treatment that her doctors recommended without insurance. So she did the only logical thing she could think of – she switched insurance companies. Less than a week after switching health insurance companies and finally being admitted to the hospital for treatment, she died. Allow me to let that sink in… She died from a curable illness. She died in a country that prides itself on being THE BEST in everything (even when it is not). She died where help was only a breath away. She died…

Unfortunately, this story is not unique. It happens all too often.

Who Knew That Medicare Does Not Pay For Most Wellness Visits?

I am in the middle of appealing Medicare’s decision to NOT pay for my annual wellness visit with my primary care physician. When I called my doctor’s office to find out if they had any idea what the problem was, I was told that there are numerous billing codes that can be used for an annual wellness visit, BUT Medicare only covers a pitiful few of them. What the heck is going on? Doesn’t Medicare realize that I am on disability due to several chronic illnesses (although none of them keep me from complaining online) and need periodic checkups to monitor my health? I take numerous medications that can negatively impact my liver and/or kidneys at any time. Without annual testing, a problem can go unnoticed until it is severe – or deadly. Doctors rely on blood and urine testing to make sure medications are not destroying their patients.

During the same wellness visit, I also complained about problems swallowing and severe heartburn – the type of heartburn that keeps a person from eating just to avoid the pain. I think THAT qualifies for a visit to the doctor. Don’t you? I saw my primary first to find out if I should see a specialist and to get recommendations. Isn’t that what my doctor is there for? If Medicare won’t pay for a visit to the doctor when I am sick, what will they pay for? Incidentally, they had no qualms about paying for my specialist bills. So what gives?

As I said in the beginning, I am in the process of appealing. My first appeal was denied so I am appealing the appeal now. I came to find out that Medicare requested my medical files from that visit for review a few weeks before the holidays, which was ignored by my doctor’s office because the person who sends the files is out until the middle of January. Seriously? No one in the doctor’s office could make simple photocopies and fax/mail them to Medicare? Apparently my doctor’s office doesn’t want to be paid – I keep ignoring their bills in the hope that Medicare will eventually come to their senses and pay for my $224 doctor’s bill. Come on, folks! I am on disability. Do I look like I am swimming in $100 bills? Anyone who collects Social Security (for retirement or disability) knows that every year our benefits cover less and less as inflation raises the prices around us. It is like being frozen at the salary you last made even if that was 10 or 20 or more years ago. Not the best of situations, I tell you.

So, Medicare, when are you going to get off your stingy butt and eliminate all this red tape regarding paying for annual wellness visits?

The Bait and Switch Technique

As the leader of my local support group South Jersey Connections, I take it upon myself to try to attend any free seminars on fibromyalgia, chronic pain, and chronic fatigue syndrome so I can share the information with my members (many of whom cannot attend due to their health). I have noticed that some brilliant (and I use the term loosely) person create a PowerPoint presentation on fibromyalgia that mainly focused on vitamin D deficiency and aluminum toxicity that can be cured by taking malic acid. This PowerPoint has been distributed so thoroughly into the healthcare community. I have seen it so many times I could recite it by heart.

Last Thursday night I attended yet another FM seminar with the same PowerPoint presentation. I was tempted to simply walkout when the chiropractor/nutritionist started his spiel but decided to NOT be rude and give the guy a chance. He obviously did not know how well-used the slides he was using were. As expected, the actual presentation was the same but, thankfully, the Q&A was more interesting. He really let his knowledge and experience shine through at that point and I was impressed. He had a completely different approach to improving one’s eating habits and dietary changes than the standard one-size-fits-all food pyramid that every nutritionist I have ever worked with uses. He focuses on your symptoms and blood work. He looks for signs of deficiencies in vitamins, hormones, and other areas. He looks to see if you are in an optimal range instead of the default ranges labs use (which are not the best ranges in most cases). He will treat borderline deficiencies through supplements and dietary changes. Having personally tried just about every approach out there (and having a diminished savings to prove it), I felt optimistic.

If you have ever attended one of these free seminars, you know the doctor or healthcare professional tends to offer a free consultation as reward for sitting through their presentation and also as a chance to get to know them better before deciding to be a patient. I usually pass on this offer because of its shear desperate sales technique. However, against my better judgement, I scheduled a free session with this man. He told me he would review any blood work results I brought with me to give example of how he could help me. I expected some basic information about increasing my vitamin D and eating less sugars to lower my blood glucose. I also expected him to try to sell me some of the supplements his clinic carries. Boy was I surprised – and not in a good way!

I show up for my free session and instead of the good chiropractor/nutritionist I met at the seminar, I meet a woman claiming to be a case manager. After quizzing her on her credentials, I find that she has none! She has five years experience working in that office as a case manager which I quickly came to realize was code for salesperson. After taking a thorough history of my symptoms, she explained the science-based nutrition program they use and then goes over the cost of said program. She spent a lot of time breaking down the costs for me with the various payment plans I could use. To do the full program would cost me $1,000 and insurance wouldn’t cover a single penny of it. Who wouldn’t jump on board for that? She was very thorough with the different payment plans and how I could spread the process out so I could raise money in between appointments.

I can’t express enough the disappointment I felt in not meeting with the chiropractor/nutritionist like promised and for having printed out all my blood work results over the past three years for nothing. I was so disheartened that I didn’t even have the energy to complain about the bait-and-switch they had pulled on me. I mean, what is the point? It won’t change how they treat me or any future potential patient, right? They obviously think this sales technique works. I am just so disappointed that healthcare clinics take advantage of sick people in this way. When you are sick, you can’t always think straight (can we say brain fog?). This technique blatantly takes advantage of us.

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.

Endless Search in a Sea of White Coats

The most disturbing part of having a chronic illness is find a doctor to oversee my treatments. Having more than one chronic illness simply increases that search exponentially. If you have bipolar, your get sent to a psychiatrist. However, psychiatrists are trained by pharmaceutical reps (and let’s face it – Big Pharm is the real driver of healthcare these days) to throw medications at their patients. They don’t have time for “talk therapy” or cognitive-behavioral therapy. They no longer seem to connect with those professionals who do. Don’t bother asking for a recommendation to a good therapist. The disconnect is an ever-widening chasm that few patients have the stamina to bridge. We are left to randomly calling therapists out of a phone book or, more likely, from the list our insurance companies offer up. We all know how well that works out, right?

If you complain to your family doc about migraines, they send you to a neurologist. But did you know that migraines comprise a small fraction of what most neurologist know? Most docs don’t even know that there are headache clinics out there that only deal with migraines and headaches. What a shock! How is a family doc supposed to manage our care if they don’t even know what specialties exist in the world of medicine? What are they actually learning in medical schools these days?

Now if you are lucky enough to have fibromyalgia (I know you can’t actually hear the sarcasm behind the word “lucky” in print), the knee-jerk response from most family docs is to send you to a rheumatologist. But wait! Did anyone ever ask the rheumatologists out there if they want to treat fibromyalgia? They only got stuck with it based on an outdated, obsolete definition of an illness that research has redefined into central nervous system disorder. WTF!!!

The bottom line is that family docs are poorly trained to refer patients with chronic illnesses. They pass their patients on to others hoping they don’t come back. Specialists, like most docs, are trained to run tests until something comes back positive for a disease. Then they cut something out or medicate the problem away. They want to cure their patients, not have a long-term relationship with them. And who can blame them? Modern medicine works best for those illnesses that can be cured. It is ever so disheartening to see the same patient over and over again without making their problem go away.

Chronic illnesses are the ugly step-child of the medical community. They require a lot of patience from both doctors and patients (no pun intended). Most illnesses that fall into this category are treated like that Whack-a-Mole game we all played as kids. Every time a new symptom pops its ugly head, the doc whacks it away with medications, physical therapy, or even some Eastern approaches that have slowly crept into our Western medicine. Is it any surprise that the patients keep coming back?

In the perfect world, there would be a cure for every illness. But since that utopia is out of reach, the medical profession should be more open to managing our chronic illnesses.