I was living my dream. I trained and performed cheerleading, dance and gymnastics starting at age 4 and continued through college. Straight out of college (June, 1994), I started my own cheer/dance training company and a year later I was hired by Washington State University as the head spirit program coach. 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), 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. I also developed TMJD, dystonia, migralepsy and other secondary conditions. Unfortunately, it took three years to get a proper diagnosis and another four years to get the proper treatment and during that time I lost my physical abilities was nearly bed bound through those years. As an athlete and competitor, I had faced challenges, this time it seemed that the harder I tried, the worse I did physically. I had to completely change my way of thinking and work on mental skills to stay positive.
Fast forward today after overcoming those initial battles and I am a best-selling author, motivational speaker and reality personality who lives with multiple rare and chronic diseases including reflex sympathetic dystrophy (RSD), migralepsy, PALB2-var, endometriosis and other pain disorders. I am a chronic pain educator, patient advocate, and president of the International Pain Foundation. I have also been fortunate enough to be recognized for my patient advocacy work with several awards and accommodations over the years.
I know firsthand how hard it is to continue looking for relief and answers, and then coming up against healthcare professionals who blow you off or do not believe what you are saying. Even after seeing over 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 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 would suggest you start with communication skills.
What I am most looking forward to at the Patient Experience Symposium 2020 is the chance to learn about positive changes that can improve the minefield of our healthcare system. I hope to gain tools at this event that are long lasting and can help me continue to push for change and access for all to tools to make smarter healthcare choices about providers, hospitals, and medical services. I hope to humanize the healthcare experience of rare and chronic patients for the attendees at this event by putting a face to the challenging experiences patients have to navigate through.
What I have learned as someone with 20+ years of being a chronic patient is I must be engaged and active. I am part of my healthcare team and must remain a leader in the decisions made about my care. I plan to bring this spirit of participation to the event itself and help push patient experience experts to focus even more on the experience of patients. It takes time and effort to stay health and once chronically ill, you must stay engaged for better access to proper and timely care. New options are always coming down the pipeline, events like this keep us in the forefront of our personalized care.