What type of advocacy are you currently involved in or hoping to be?

I have been in advocacy for 15 years or more. I went to the Summit on Capitol Hill with the Arthritis Foundation and have been a Platinum Ambassador with them. I have been with SHN since they were WEGO and have several years of experience working with them. I was a judge for 12 years on the Awards and have been nominated for Awards many times. I have voted for many Legislative/Healthcare Policies. As a Platinum Ambassador, I was invited to return to Washington, DC, for a second year. I became ill with a severe Lupus Flare and Pneumonia that year, so I did not get to go. There are so many things I have done over the years. I put up banners for the Pain Foundation around my town for several years. I worked with Tiffany and her foundation long before she got her non-profit paperwork. I still put up Facebook information from them. I am now actively involved in changing the way doctors treat patients. Rather than keeping us well, they were taught in medical school to treat us after we are ill. I am for some natural approaches as far as medicines. I have several Facebook Pages. I have my own blog that I post on. My blog has been up for 15 years.

- Community Awareness & Education
- Legislative Advocacy

- Healthcare Collaborator

I do all of these independently and with MEActionMD, a chapter of MEAction National (meaction.net).

I also do all of this within the owner trainer service dog community and have been since approximately 2009.

I’ve been advocating since the age of 14 when I was diagnosed with systemic lupus erythematosus (SLE). However, my advocacy has transitioned over the years to keep up with the time and continued changes of research developments and patient needs.

Today, I’ve been getting more involved with Healthcare Collaborations. I’m a grass roots advocate and thoroughly enjoy making connections and providing resources to lupus patients in the areas I serve.

I've been advocating for most of my life in one way or another. I've had a "sickly" but productive life. Finding out at the age of 22 that I had endometriosis started me on the rabbit hole of trying to understand what I had and how to handle it. Fast forward and I live with CRPS (Complex Regional Pain Syndrome) also known as RSD (Reflex Sympathetic Dystrophy) the treatments I need are expensive and my insurance wouldn't cover them. I ended up going public with a national campaign, a little over a year ago, utilizing multiple fronts such as direct action, petitions, social media blitz, videos, etc. I have won a number of battles and continue to apply pressure in hopes of getting other people access to the care they need to live a quality life.

I actively seek people fighting insurance denials, and prior authorization nightmares, and have been lobbying in DC for healthcare reforms and access to life-saving care.

I work to raise awareness about Complex Regional Pain Syndrome, Small Fiber Neuropathy, and other rare illnesses that rob people of their lives while private for-profit insurance companies deny access to life-saving quality care.

I hope to normalize the treatments that are working in that same arena such as Ketamine Infusions and LDN (Low Dose Naltrexone). Having had success in getting medical insurance coverage for ketamine infusions for myself and others. There is a lot more work to be done. LDN is still a fight to get any kind of coverage with the hope of helping more people have more choices in their care.

I've been working with multiple organizations and am excited to learn more ways I can be effective in what has become my life's work.

In my prior life, before Illness, I was an EMT (Emergency Medical Technician) and Licensed Nursing Assistant for just about twenty years. I served as a state representative for four years and numerous advocacy posts. Then when I became ill with breast cancer, my second cancer diagnosis, it brought on rare illness and devastating physical disabilities that ended my medical career.

Having CRPS is hard in that it is also known as the "Suicide Disease" causing 70% of people young and old who have it to consider or succeed in ending their lives. I'm on a mission to get as many people as possible access to the care they need to live a life worth living, to reverse as many denials as possible, and to continue to be able to create positive outcomes in healthcare for as many people as possible.