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…

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Food for Thought

I have an eating disorder, but not the one you are thinking of. It is not the one where I am obsessed with being thin and wasting away to nothing. Been there, done that. I slayed that demon when I was in my twenties. No, I have a different kind of eating disorder. You see, for about one week every month, every time I eat I have pain in my chest and upper abdominal area as well as severe nausea and sometimes vomiting. My doctor has already eliminated any gastrointestinal problems as the cause, meaning I have to endure more tests to solve this conundrum.

Meanwhile, I am left with episodes of pain and nausea. Now I am scared to eat. I see the numbers dropping on the scale. I have to admit that at first I was thrilled. My old demons tried to tell me this was good. But I knew better. Now I am scared of the numbers falling. I am scared when my clothes simply hang on me. I am scared of eating.

The way the healthcare process works in the US means it could take months if not years to find an answer to my health problems. You know what I mean: initial appointment with specialist takes a few months to get, then it takes another month to get first tests done, then another month or two to get appointment to see the specialist again. This can repeat over and over again. I first saw my current GI doctor back in January. In that time, I have had two tests completed plus bloodwork. Now I am waiting another month to have another test done with a two-month wait until the doctor has another appointment opening. My biggest fear is that my weight will drop down to critical level or malnutrition will force me to the ER. I cannot imagine going through this delayed process if I had cancer. Americans like to make fun of social medicine in Canada and the UK for their long service wait times. But, HELLO PEOPLE! We are just as bad in the good US of A!

There is nothing scarier than knowing your health is going downhill and being at the mercy of a slow system of care. It is crazy that in this day and age with the level of technology we have that healthcare has not moved out of the 20th century.

Managing Chronic Pain in America – Part 2

According to the Substance Abuse and Mental Health Services Administration, there were 2.1 million people addicted to prescription opioid drugs and 467,000 people addicted to heroin in the United States as of 2012. Why are so many people taking these drugs illegally? Are they all bored teenagers wanting to experiment with drugs? Are they down-on-their-luck adults looking to escape their depressing realities? Maybe. However, I want to present another type of drug addict. It is the addict that looks like your average American – going to school, working hard, raising a family, following their dreams. And then one day pain enters their life, a pain that does not go away. A pain that refuses to heal after the injury that caused it has healed. I am talking about chronic pain.

There is a lot of debate regarding how many Americans suffer from chronic pain. The Institutes of Health’s 2012 study estimated that around 100 million people suffer from chronic pain (defined as anyone with moderate to severe pain occurring within the past four weeks). The 2011 Journal of Pain study estimated a more conservative number of 39 million people (defined as anyone with frequent or constant pain experienced most days within the preceding three months).

If we leave behind the semantics of defining chronic pain, we still face a staggering number of people with this condition. According to an article published by the National Institutes of Health, only about 5% of pain patients who take opioid painkillers as directed actually abuse them. So what does that mean? It sounds like the DEA and FDA want to throw the baby out with the bath water by decreasing access to pain medications for chronic pain sufferers. Why are we willing to punish 95% of chronic pain patients to a lower quality of life simply because the other 5% has a problem? Should we not do a better job of weeding out those 5% and getting them treatment options that do not include pain medications? It is great that health insurance plans cover pain medications and drug addiction programs. But why do they not cover more options in between these two extremes?

If pain patients had more evidence-based treatment options covered by their health insurance plans… If the National Institutes of Health allocated a greater percentage of funding to pain research… If we, as a society, did not label people in pain asking for help as drug seekers… If we would only show a little compassion to those in pain…

Managing Chronic Pain In American – Part 1

The Backstory

Once upon a time in America, pharmaceutical companies decided to get richer off of patients’ pain. They had some good intentions -like relieving pain-and they had some nefarious ones -like wanting to make stakeholders richer. They created a huge ad campaign targeting both doctors and patients to use their opioid medications. As a result, pain was better managed. However, since doctors were rarely shown the big picture of what opioids can do, millions of people became addicted to them, eventually turning to heroin after their doctors cutting off their legal supply.

Big Pharma encouraged doctors to over-prescribe opioid pain medications because the manufacturers only revealed data that supported the safety of these medications. Doctors were encouraged to treat chronic pain liberally with opioids, never knowing the very real costs to patients. Doctors treated pain patients with opioids as a first step instead of trying other pain medications and/or alternative methods (e.g., physical therapy).

In 2012, 259 million prescriptions for opioid medications were written; and since 2000, a 200% increase in overdoses by opioid medications has occurred. This may appear cut and dry on paper. If we limit the supply of opioid medication available in the U.S., then overdoses will decrease. Whenever there has been a decrease in opioid pain medications both in terms of prescription and overdose, heroin has simply moved into its place. In fact, according to Time magazine:

This rise in cheaper, purer and more readily available heroin has coincided with a law enforcement crack down on illegal prescription pill providers.

According to the American Society of Addiction Medicine, the rate of overdose deaths and the sales of opioid pain medications both grew in tandem to each other from 1999 to 2008. They also state that one in four heroin abusers started with opioid prescription pain medications. These gloomy statistics would be enough to make me jump to the conclusion that opioid medications are bad for us as a society. However, research has shown that when the supply of opioid medications decrease, abuse of its illegal counter-drug increases. See this:

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And this:

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The marketplace for abused substances tends to balance itself when the availability of one decreases.

… to be continued.

 

 

 

 

 

 

 

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.

Fibromyalgia Awareness Day 2015

May 12th is Fibromyalgia Awareness Day! This year I plan to attend a walk in New York City to raise money and awareness of this disabling disorder. It is called the Caterpillar Walk and will be held this Saturday. My wonderful son will be accompanying me. I think he is most excited to be going into the the city. He has never been even though we have driven by or stopped on the outskirts numerous times. I am also excited (er… nervous) – (1) I have never driven in NYC before, (2) with my brain fog, I am worried I will get hopelessly lost, (3) I will forget where I parked, (4) what if my feet and legs are in too much pain? (5) what if I am too fatigued to drive home? The worries are endless…

Raising awareness for any illness is important. It helps when we are advocating to legislatures about allocating funds for research and treatment options. It helps when we are raising money for advocacy and research. It helps when trying to explain our symptoms to family and friends, and even strangers.

So, for those of you who are not familiar with fibromyalgia, here is the 30-second elevator speech version:

Fibromyalgia is a chronic pain disorder with a variety of symptoms, the main ones being: fatigue, sleep problems (including insomnia, sleep apnea, non-restorative sleep), cognitive dysfunction (also know as brain fog or fibro fog), stiffness, tenderness. Other symptoms that can occur are depression (because who wouldn’t be depressed sitting around all day in pain?), anxiety, migraines, acid reflux, irritable bowel syndrome, irritable bladder, pelvic pain, temporomandibular joint disorder. Doctors do not know what causes this condition but research has shown it effects the central nervous system, immune system, and the sympathetic/autonomic nervous systems.

In a nutshell, it sucks. As a Guns & Roses songs states, “What we have here is a failure to communicate.” It is like our bodies are out of sync and rebelling against us. This has a profound impact on our daily quality of life.

I have a challenge for all of you who do not have fibromyalgia. Place a clothespin on one of your fingers. Can you last ten minutes with it on? How about an hour? A day? That is only one of the symptoms people with fibromyalgia live with on a constant basis – only we never get to take the clothespin off.

Parenting With a Chronic Illness 101

When I got pregnant with my one and only child, I was an active and vibrant twenty-something year old. I had a great career that allowed me to travel all over the country. It challenged me at a level I wanted and, not to mention, it paid awesome. Those early years of parenting were difficult as a working parent but so worth it. I have to admit I felt like Supermom. Mom by night and worker bee by day. I thought I had it all. At some point, I switched careers so I wouldn’t travel anymore and could be home every night with my little one. But I still felt like Supermom. I am sure other working parents can relate.

Then IT happened…

I was about to turn 30. My husband and I were talking about having another child. I was comfortable in my new job. I was happy. But then I got a headache. I was never one prone to getting headaches – maybe one or two per year. But this headache was different. It didn’t go away for two weeks. And then it came back for a few more weeks. I knew something was wrong. I knew this was not normal. It took me several appointments with my family doctor and a neurologist who didn’t specialize in headaches or migraines before I realized they couldn’t help me. However, I am a researcher and did my due diligence. I found a top headache/migraine center not too far away in Philadelphia called the Jefferson Headache Center. It took two excruciating years of trial and error – plus a week-long stay in the hospital¬† – to stop my now daily, chronic migraine. I felt like I was in a nightmare until the pain stopped. However, by then, my brain and central nervous system had been rewired to amplify any and all pain while decreasing the neurotransmitters that suppress pain. It was a formula for fibromyalgia that was eventually diagnosed a year later.

Meanwhile, I was still trying to be Supermom to my little toddler. He was only three-years-old and could not fathom what was going on. I put all my energy into hiding my illness from him while my husband and I frantically looked for answers for my health. For those few hours after work that I would spend with my son, I would try to be active and play with him only to crash as soon as he was in bed. It was a strain on all of us.

Despite my best attempts, my son knew something was wrong. The pain was written all over my face. It was programmed into the way I walked, the way I moved. I could not hide it from those close to me. One night I was crashed on the sofa while my son played with his blocks. He came over to me with his Jaffy (an orange, stuffed giraffe he got as an infant and could never be without until he was ten) and place the raggedy animal on my head. “Jaffey will make you feel better, Mommy,” he said. It was so cute and sweet that I wanted to cry. My illness was already impacted my son. I felt like a failure as a parent because I couldn’t protect him from seeing his mom hurting. It was my first lesson in parenting with a chronic illness.

The Big 4-0: aka, My Aging Chronic Illnesses

This past Monday I turned 40 years old. Four decades. Two scores. I am not the type of person who freaks out over getting older. We are all getting older every second of every day. It is no big deal. However, this birthday is slightly different. You see, my fall through the rabbit hole of chronic illnesses and disability all began right around my 30th birthday. I literally see my thirties superimposed by my poor health. It started with a migraine that lasted two weeks and quickly spiraled out of control with shingles, fibromyalgia, raynaud’s disease, osteoarthritis, degenerative disc disease, chronic fatigue, acid reflux… And I am sure the Fates are not done dumping on me yet.

However, I view my forties with hope. A hope that things will get better for me and my health. I am hoping that the mere changing of my decade from a 3 to a 4 will magically change everything. I guess it is no secret what I wished for when I blew out my birthday cake candles. What would you wish for if your life was ruled by chronic pain?

I can honestly say that I did not picture myself in my current predicament ten years ago. Back then, I thought I could simply make an appointment with my doctor and everything would be fixed. Then I could move on with my plans for my career and having another child. Needless to say, neither of those things happened. I lost my career and the chance to give my son a sibling. He seems okay with it, but I still have moments when an overwhelming sense of loss over what could have been washes over me. I know my body cannot physically care for the needs of a newborn. I have babysat friends’ kids and been completely overwhelmed. I accept that reality but the heart doesn’t care. It still longs for what could have been.

I was approved for Social Security Disability when I was a mere 32 years old. At the time, I saw it as a temporary condition that I would change in five years, ten tops. After eight years, I am still struggling to find a livelihood that can support me with my physical limitations. No luck yet. Part of the problem is that I doubt myself too much. I have been out of the workforce for so long and my brain fog has gotten worse so that I don’t trust myself to be able to think properly when it counts. I lack the confidence to put myself out there.

I don’t stress aging, at least not my body aging. I fear the progression of my illnesses and their proclivity to multiply. I started with the chronic migraines, which I thought was a living Hell. Now I know better. I would willingly sacrifice part of my lifespan if I could live out the rest of my life in relative health, able to do all the things I love to do.

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?

FDA Cracks Down on Access to Pain Medications

In recent months, the FDA/DEA has enacted new rules and regulations regarding the scheduling of certain pain medications. The main change was bumping up hydrocodone to Schedule II. This change may appear minor on the surface but it is having a ripple effect throughout the healthcare community. Doctors are more leery of prescribing the medication due to fear of being investigated for improper prescribing practices. Pharmacists are scared to fill valid prescriptions due to fear of going against company policies and losing their jobs. Pharmacies are writing company policies that deter their employees from filling prescriptions. And what happens to a patient who relies on these medications every day? They end up in the Emergency Room going through withdrawal which gets them labelled as addicts.

Another medication that was also rescheduled this year and which has not received a lot of press is Tramadol. It went from being unscheduled to now being a Schedule IV. This also appears to be a fairly innocuous decision. However, it was not enacted without its own headaches. Most patients were surprised to have their prescriptions voided as soon as the new rule went into effect. Pharmacies were told it was to their discretion to fill refills on prescriptions written prior to the change. Most pharmacies saw this as an opportunity to void all refills. The scheduling change happened under the radar, overshadowed by the Hydrocodone issue. Therefore, many doctors who regularly prescribe Tramadol missed or forgot about the change and wrote new scripts on the wrong prescription pads (and yes, doctors have different pads for scheduled versus non-scheduled medications). Regardless, even with a new prescription in hand, many patients were turned away by their pharmacies. From my own experience, my pharmacy went out of its way to NOT talk to my doctor. They persisted in calling my doctor’s office after hours day after day. They even had the gall to tell me they were leaving messages for the doctor to call them back, which is not an option if you call my doctor’s office after hours. After a week of playing phone tag with the pharmacy, I finally had to take matters into my own hands. I was truly appalled at the level of either incompetence or desire to not fill my prescription that was expressed by my pharmacy. Needless to say, I am happily switching pharmacies as soon as my health insurance changes on January 1st.

Now I don’t rely on traditional pain medications every day, something I am eternally grateful for. But my heart goes out to those who do. If I am having this much trouble getting Tramadol filled, I can’t imagine the heartache and pain they are. Doctors and pharmacists are taking the oath “first, do no harm” to literally and are erring on the side of doing nothing with the mistaken belief that that is was good healthcare is.