Voices Across America

My Patient Story

Melissa

State: California
Congressional District: CA27

Diseases

Bone / Muscle Disease, Chronic Pain, COVID-19, Gastrointestinal Disease, Immune Disease, Mental Health, Neurological Disease

Issues and Challenges

Melissa has encountered: Access to Expert Providers, Disability, Food Insecurity, Insurance Coverage is Inadequate, Invisible Illness, Job Insecurity / Loss, 1, Mental Health Access, Social Security Disability, Transparency in Health Care, Underserved Community, Uninsured

My Story

I'm a Fibromyalgia patient advocate, the Executive Director of the Support Fibromyalgia Network nonprofit organization, and a Board Certified Functional Medicine Health Coach.

Growing up I was a straight-A student, science nerd, Olympic Honoree, and Olympic Torchbearer. I thought I was going to fulfill my dreams of competing in the Olympics and becoming a doctor. Instead, after a head and sports injury at the age of fourteen I was left bedridden and in severe chronic pain, with brain fog, depression, and fatigue. Treatments options didn't work. My mobility was severely compromised and I found myself struggling with every aspect of life. I was diagnosed with Fibromyalgia, a condition in the 90s I was told was rare for someone my age to receive. It was a mysterious condition with confusing information.

My family was thrust into a medical world that we were ill-prepared to understand. We endured medical insurance denials, disability denials, medication side effects, high out-of-pocket expenses, and the list continued to be overwhelming.

I would spend over 20 years with declining health and no hope of improving. I added more conditions to my diagnosis list including an unrecognized "autoimmune something". In 2016, I saw a doctor who told me, "something was wrong, but just go home and enjoy the time I had left because he could not explain what was happening". My frustration grew so much that I decided to biohack myself to better health. Somehow the science came together and the new things I implemented worked! With my brain power back and less pain than I could even imagine, I'm determined to bring positive changes and create improved resources to the Fibromyalgia community. No one needs to fight this alone!

With #SupportFibro, we have a launched up-to-date patient education, Fibromyalgia Advocacy Hill Days, increased research and technology collaboration, and established a medical education model through Project ECHO.

I've also been able to join the health professional circle as a Board Certified Functional Medicine Health Coach, a Certified Wahls Protocol® Health Practitioner, and ReCODE Coach for the Bredesen Protocol. Not only am I empowering patients to be their very best health advocate, but I'm also working hard to build patient-provider relationships, and include a personalized approach to treatments for Fibromyalgia and autoimmune conditions.

As a believer in the mosh pit ethics, "when someone falls down we pick them up". You better believe I'm doing that with everyone I meet along the way. My mission - Support Fibromyalgia!

My Motivation and Inspiration

Music has been a great inspiration! Touring on the road with bands gave me joy and I forget all the pain. I enjoy bands like Rise Against and MXPX, but I love all types of music. Recently, I've been inspired by growing my own food. My Warrior Garden is full of raised beds, container gardens, and I'm experimenting with aeroponic technology.

All the stories and messages of people living with Fibromyalgia inspire me to move forward. I'm mission focused on Fibromyalgia and I won't leave anyone behind.

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