I have been battling chronic pain since 1997. First with endometriosis, which resulted in a full hysterectomy and left oophorectomy. Then in 2002, I developed Reflex Sympathetic Dystrophy (RSD), which is also known as Central Pain Syndrome. This is a progressive neuro-autoimmune condition that affects multiple systems in the body and needs to be treated early so that disability does not take over. I also have secondary conditions including migralepsy, TMJ disease, osteoarthritis, gastroparesis, and tricuspid insufficiency. Last year, I also developed valley fever phenomena and am currently dealing with the complications of this new challenge. I go through stages of physical abilities now in and out of remission, but have had times when my physical abilities were poor and was bed bound for years. As needed, I use a wheelchair or scooter to get around.
It took three years to get a proper diagnosis and another four years to get the proper treatment. As I search for solutions, I have become my own best advocate and work share the information so that others do not have the same life challenges that I have.
Even after seeing more than 100 healthcare professionals, having major surgeries I didn’t need, complications such as internal bleeding, medication interactions, kidney stones, tumors, severe constipation, and so much more — I did not give up or give in. I was tested to my limits and realized, as with most people, they are past the boundaries I placed on myself. I had to become the chief of staff of my own medical team. If I can do it, anyone can.
I am excited about making life better for all who live with a rare or chronic disease. I continually find ways to do this that are meaningful, inspirational, and creative. I have my yearly projects such as participating in NERVEmber, Rare Disease Day activities, and Chronic Pain Awareness Month activities. One of my highlights was teaming up with a pharmaceutical company and working on a Super Bowl commercial, but I also enjoy smaller advocacy projects such as serving on advisory boards, giving input on upcoming clinical trials, and learning about what is coming down the pipeline for me and others living with the conditions that will improve our daily living. I also work to include other activities such as participating in documentaries, awareness events, and other media pieces.
The reason I became an advocate was the challenges I faced when it came to navigating the health system. It can be difficult, but success should be obtainable. My energy pennies are spent working to make it better for the disadvantaged, low income, and underserved populations through advocacy. I want to be there for others as I wish someone had been there for me when I became chronically ill. I was not always disabled. When my life changed, I was not prepared, and it took losing everything and learning to rebuild through trial and error.
My background was as a cheerleader, dancer, and gymnast. I started at age 4 and continued through college. Straight out of college, I started my own cheer/dance training company. A year later, I was hired by Washington State University as the head spirit program coach. I was living my dreams.
Now, I advocate for all who are challenged with a condition involving chronic pain as well as their family, caregivers, healthcare professionals, industry, and public. Until you feel the freezing fire of chronic pain that is unrelenting and oftentimes thought-consuming, it is difficult to understand all of the challenges it brings. We need to share our stories to help raise awareness as well as tools from industry that help bring proper and timely care for each of us. This care must be individualized to our unique needs with common steps that can be replicated to streamline care. Whether physical or mental, chronic illness can and will consume you if you allow it to and only the patient can begin the process of healing and asking for help. It is up to industry, providers, and the public to be there and make available tools and support.
I have learned that honing and defining my story is an important aspect of being an advocate. I used to spew it all out and see what stuck, but I have learned that when I concentrate on a few key points specific to my audience I will be a more effective communicator. For instance, when I spoke at a recent rare disease event, I focused on how living with rare conditions has influenced me and how more rare disease research and funding are needed.
There are thousands of health challenges that need working on, from access to medication to finding a compassionate doctor. Defining the issue that is important to you is key. You must be able to explain your point of view and back it up with data and science that is relevant and recent. Being yourself, being vulnerable, and sharing your story are powerful ways to engage the public and create change. I am but one of millions who work to make a difference in others’ lives.
It is always nice to be recognized for sharing my story, helping create tools and resources for others in similar situations to my own. When I reflect on the honors placed on me, I remember one of my favorite quotes directly related to a cause that chose me, “The ultimate measure of a person is not where they stand in moments of comfort and convenience, but rather where they stand during times of challenge and crisis." If I did not live through the pain and other chronic symptoms, I would not be the person I am today.
Unfortunately, so many other patients experience a similar story. I had to learn the hard way and now I pass on my knowledge to give hope and answers to all patients, caregivers, industry, and healthcare professionals. I hope speaking out about my journey stops it from happening to anyone else. (PV)
