What are you savvy about?
Savvy isn’t just having knowledge or expertise. To me, savvy is how you live life. From the healthcare perspective & life as a patient, I need to be savvy about insurance & whether my provider is in or out of network. It’s almost a full-time job being a patient. I’ve had to take on the role of social worker & complex case manager in addition to already being sick.
As a patient, I’m savvy about autonomic dysfunction, primary immunodeficiency, migraines, depression, rare diseases…the list goes on. As a nurse, savvy was a way of life. Empathy & the human condition were part of everything that I did. But, that was before life was turned upside down.
WE aren’t just numbers, we are real people with stories to tell & we need others to listen. We can change healthcare, but patients need to be a part of the change. After all, that’s why healthcare exists. Us.
What is one of your most memorable advocacy experiences?
One of my symptoms with my Autonomic Dysfunction is flushing. Think of a perpetual hot flash, minus the sweating. Episodes can last anywhere from 15 minutes to 96 hours (at least that’s the current record). I had done research and found a potential medication that was used for flushing with endocrine tumors. In an appointment with my neurologist, I mentioned that this was something that I wanted to try.
He told me that it was a cancer drug. Point blank, he said “do you have cancer?” After discussing that no, I didn’t have cancer, I asked him if he ever asked for help from his colleagues with complex cases. I gently suggested that perhaps he go outside of the circle of neurologists and get a hold of an oncologist to see if we could make this work. I was able to see the oncologist, do testing and got to a point that we were going to do a trial of the medication! Victory was mine. Until we changed insurance.
What's an example from your own life of how healthcare is not user-friendly?
The end of 2016 our insurance changed. We were given a short notice period; 10 days to be exact. My nursing background and case management kicked into gear. After checking to see if any of my specialists would remain in-network, I sat back in disbelief. Eight members of my care team would no longer be available. After getting a hold of a transitional case manager, I was able to figure out the first two weeks of my care.
A complex case manager couldn’t be assigned to me until after the insurance plan changed. Plus, we couldn’t start getting any providers lined up either. It was a little like Cinderella at midnight. Poof…everything was gone. Suddenly I had to build from ground zero. The hardest specialist to get in place was my Autonomic Neurologist. Even though we had switched to a University system, they didn’t have anybody that would take on my case. Nine months later, we finally got a doctor. NINE MONTHS!.
Why do you think patient insights matter?
Can a doctor give insight into what it feels like to recover from surgery? No, not unless they have been a patient. We are the ones that have experienced procedures and felt the pain. We are the ones who are questioned about our symptoms. The only person that can tell you about what it’s like to live with a condition is the patient. Insights into how appointments go, medication management, disease progression, quality improvement…ask a patient. We’ve been there, done that and could probably write a book about it.
Never assume that you know something about a person. You can’t truly walk a mile in someone’s shoes. If you could though, you would run the other direction. For many of us, there is so much uncertainty with our diseases. We always have an element of fear of the future. We also must live the best life we can. That includes giving insights and improving healthcare as the opportunities arise..
What excites you about being a Savvy Co-op Member?
We are a part of something groundbreaking and brand new. There aren’t many times in our lives that we will stumble upon an opportunity like this. As Savvy continues to grow, we will be able to have experiences unique to just us. It is great that there are gigs that allow us to give insight, but more than that even. We are a co-op and owners. Making decisions for further growth and shaping the future are something that are exciting. The possibilities are endless..
What hidden talent do you have that others don’t know about?
I started riding horses when I was three years old. Thirty years of horses; I haven’t ridden since I got sick but nuzzling with a horse is like a piece of Heaven.
If you could give one piece of advice to people just getting started sharing their healthcare journey, what would it be?
Take a deep breath and just take one step at a time. A new diagnosis can be completely overwhelming. Try to stay in the present. We can’t be afraid of what hasn’t happened.
Which term(s) do you prefer to describe someone who utilizes healthcare?