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 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.
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.