Hoping on Hope


Today I’m feeling like the healthcare system has failed me. Eight years after inflammation appeared on my right shoulder, dozens of prescriptions, different doctors, countless nurse practitioners, various nurses, medical students learning about my rare case, an array of Emergency Rooms, several procedures such as: spinal injections, MRIs, CTs, Botox injections, and nerve blocks, alternative treatments and, at last count, I have 10 specialists on speed dial and I have not found relief. It’s really a dizzying thought when I think of it. I’ve spend so much of my time, emotional energy, and money to have a better quality of life despite my chronic illness. Since I could remember, I have been searching for an answer. First, it was a diagnosis. Then, it was a doctor. After that, the process to find specialists. Soon after, a proper ‘cocktail’ of medication. Establishing a new low-stress and healthful lifestyle came next. Now, I’m on the hunt to improve my quality of life. I forgot to mention all the other tasks of being a chronically ill patient: billing, keeping proper finals, making, rescheduling, and canceling appointments, coordinating transportation and lodging to those appointments, and stacks of paperwork that need to be done. Needless to say, managing my health has become it’s own job in and of itself. I joke that I could hire-out a part-time personal assistant for all this madness. This is why I consider anyone who works in healthcare and can keep their sanity as some kind of saint and superhero combination. There is actually truth to the joke: all of this could be considered a part-time job. Maybe one day I can afford to hire it out. My real hope is that there will be no need.

Today, I’m not feeling very hopeful. I’m just filled with questions. How is epigenetics going to stop my chronic pain in its tracks? Am I ever going to find a doctor that will look at the whole picture, instead of a list of my symptoms? Am I ever going to be treated in the way I need by our obviously broken healthcare system? Why am I continuously under treated for my pain? 

Those are just a few of the questions swirling around in my brain. I find it difficult to focus on anything else. I’m constantly researching, reading, and watching Ted Talks to keep up on the latest in healthcare. My biggest fear is that I will be searching my whole life: wasting my precious time, energy, and money. My biggest question of all: where do I go from here? What is the next step?

I hope this year brings more answers than questions. For now, I will cling to my last bit of hope.


2 thoughts on “Hoping on Hope

  1. I also feel like the healthcare system has failed you and me. In failing you, they have refused to look at you in your entirety. They simply shut down when the objective signs are not there and you no longer fit into the medical algorithm that we are all taught. Some may try, but honestly the system is not set up to function in that way.

    I worked as a nurse case manager, exactly what you need right now, check with your insurance company or primary care physician, as chronic care management is being implemented into most healthcare agencies as we speak, under the new ACA guidelines.

    I too, do not fit. I am a nurse with a new diagnosis of Dystonia. It is not like cancer or kidney disease or cardiovascular disease. It is not black and white. Black and white is the essence of the medical community. They expect practitioners to practice under this pretense. So putting your faith in this system will never be your answer. The system is based on profit and managing healthcare costs, a business if you will, and that is why they will continue to fail you and me (the patient)and me (the nurse) and the practitioners who can’t take the time to practice medicine as an art of healing, the reason (hopefully) most have chosen it as a career.

    So to answer your question, I would say this; put your hope and faith in yourself and a higher power if you choose, and never stop advocating for yourself. But do take time to rest and rely on others for support.

    I hope this year bring you peace and healing. And if I can help in any way, please don’t hesitate to ask!


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