Wendy R., RN
The idea of art for advocacy means we can learn to heal in a personlised way by navigating our health and healing on our own terms. Eorthfolc is an old term that stands for a natural balance of the mind, body and spirit. My own path to healing was finding a creative outlet through my works of art, but successful healing through healthcare required being informed and becoming my own advocate. I am forever grateful that I found help through other healthcare advocates.
My story is about my own healthcare challenges and those of countless patients I’ve cared for as a Registered Nurse. The unexpected result of my own misdiagnosis made it abundantly clear that I had more to learn and teach about navigating healthcare. The many hurdles, frustrations and misgivings many of us face are complicated by a system that doesn’t work for us the way it was originally designed. Today, people are treated for a “symptom” not the cause; only for “The reason for your visit, today” when you go for an office visit or hospitalization. Unless you understand how to navigate the system, your concerns may not be addressed and your voice will not be heard.
Knowledge is power so you can become the champion of your own healthcare and that of your loved ones too. Through case studies, blog post articles and mini-courses my goal is to provide you with the tools to ask for and get what you need out of healthcare. Some people learn better by reading so there are some ebooks available too. If you want a weekly newsletter in your email to stay current with healthcare issues, it is easy to subscribe for free. Your information is never shared or sold. More about my own story…
I sat in my chair at work one evening and couldn’t get back up, literally. My right hip and back pulsed with sharp pain that didn’t dissapate. Tears streamed down my face as I sat there in silence wondering what to do next. In my nursing scrubs, I was wheeled down to the emergency room where I sat for 30 minutes in the waiting room. It felt surreal to find myself on the other side of the glass, powerless and looking oddly out of place. Several other people were waiting there too, noticing how out of place I was.
Several hours later I had been given IV fluids, a very strong dose of fentynal, an xray, and told that I most likely passed a kidney stone. There was no evidence of this, but I was sent home with a prescription for strong oral pain pills I couldn’t take at work. Barely able to walk, I was back at work two days later, limping up and down the halls in pain. This happened in August and by October I couldn’t walk more than 20 feet. My husband drove me to the records department where I requested a copy of the emergency room imaging and lab results. There it was in black and white, the diagnosis no one mentioned to me; spinal stenosis and degenerative disk disease. I felt betrayed by my own workplace, the hospital that employed me.
Since I had already made the appointment with the hip specialist, I limped my way into his office hugging the wall for support. His xray confirmed the spine issues and he went on to say my hip pain was arthritis. He told me I needed to get more active and wear only supportive shoes. To me this was laughable since I could barely walk. Sure, I thought,” I just need to get back to my job and get busy. Isn’t that what everyone thinks I should do?” Caregivers are not supposed to be the patients, right?
During those months off work, when I waited for my upcoming surgery date, I began to paint. At first it was simple abstract beachside watercolors, then colorful acrylic landscapes, and finally complex oil paintings which took more than a month to dry. In all, I had more than a hundred works completed by the time I recovered. I just kept painting on my days off, but I had no idea what to do with them.
By December that same year I had undergone spine surgery, outside my network of providers. Nothing more was said about my hip or the diverticulitis that was found, nor my dairy allergy. I was handed a prescription for strong pain medications and a statin drug for high cholesterol (which I could not afford at $500 a month.) By February 8th my workplace fired me and I was left with no health insurance and no way to pay for the physical therapy my surgeon prescribed. Just like that I was an out-of-work RN who still owed money for my student loans and my husband was permanently disabled.
So, without knowing if I could even do the job, I reapplied for my old job and was rehired. Six weeks into it, my hip was causing me a great deal of pain and I was limping the entire shift. While many of my coworkers asked me if I was alright, I did not forget that not a single person had sent me a card, flowers or came to visit me when I was off work for the previous five months. The guilt I felt about my unintended time off work disappated as I realized that my days as a floor nurse were over. At the age of 56, it was time for a change.
It was frustrating to realize that my original problem had not been diagnosed. I was told that I would most likely require another surgery; hip replacement at the age of 56. This time around, I knew that I would need to make my own informed decisions based on all the facts. I also realized that my health was a precious commodity that required nurturing and self-care. When I needed help, I learned that could find it through professional healthcare navigators, advocates, chronic care specialists and private nurses.
This experience helped me understand that most of us have a false sense of security when it comes to our insurance. We gladly pay it because we think of it as a savings account that will pay off if we should need it. This simply isn’t true. The sheer volume of doctor bills that piled up were nondescript and confusing. Even if I wanted to at the time, I wouldn’t be able to dispute a medical bill I couldn’t interpret. Not to mention that just like that, it was gone when I needed it most.
My coworkers were surprised to learn that our short term disability insurance would not cover a workplace injury, nor would the long term disability insurance. Not that I had a workplace injury, this time. Also, a workman’s compensation attorney explained that the state laws are in favor of employer protection, not employees in Ohio. In my case the only choice I had was to return to work or find another type of nursing position. Since I was fired, maybe I would have been approved for unemployment benefits, but I felt obligated to return to work, instead.
Although I felt that healthcare had failed me at the time, it seemed like the healthcare workers themselves had good intentions. So what was the problem with this system? After the shock, anger, and depression wore off, I knew that there must be a better way. I began conducting my own research. It took some time, but I finally came across the idea of “patient advocacy”. That is when I knew I had found a way to help navigate the complicated healthcare system for myself and for others, to help them avoid the same setbacks I experienced.
Immersion in every aspect of advocacy is the only way I can describe my new obsession with this self empowerment. I read everything I could find and began calling experts in the field of healthcare who had taken the same path. I gathered and compiled new ideas, insight and resources to help myself and others too.
The idea of art for advocacy began. Essentially, It means we can learn to heal in a personlised way by navigating our health and healing on our own terms. Successful healing through healthcare required being informed and becoming my own advocate. Your personal healing journey will be unique to you, and you alone. But when you need a navigator, there is help available to you and your loved ones.
Wendy Richmond, RN