Don’t want to read the whole story? Scroll down to the bottom to watch my 2016 Stanford Medicine X Ignite Talk.
My health story is a long and fairly complicated story. A tale of a girl who went through most of her life undiagnosed. Suffering many different symptoms that were never connected. It wasn’t until her late 20’s that this woman was able to put all the clues together and finally solve the mystery.
It may be a lengthy, roller coaster journey, but unfortunately, it parallels so many other chronic illness patient’s stories as well. I hear stories, day in and day out, of patients searching for answers. Some taking years to unearth, while others still on their quest to find their missing puzzle piece.
September 2016 was a full circle moment for myself and to be able to tell you why, first I must give you a brief, highlighted synopsis of a few chapters in my book.
A Little Back Story
September 21, 1985, I came into this world screaming and excited to take life by the reigns. My Mom recognized the importance of keeping track of my health and developmental progress, so she started a written file on me. Every time I’d go to the doctors, take a medication, receive a test, celebrate a monumental victory – she’d write it down in my file.
Looking back through my file, it’s quite apparent that as I grew up, I acquired many infections which required me to take several different antibiotics. Up until the time of 5th grade, they seemed like normal illnesses to have, therefore my health wasn’t truly a concern. But, shortly after getting into the double digits of life, I started having a lot of knee pain.
What started as knee pain, clicking and locking, ended up resulting in a surgery. My meniscus had been ripped, flipped and separated from the bone. It was misshapen and my doctor advised my parents that it probably had been that way since birth. And, through activities, such as softball and dance, I injured it. It seemed like a logical explanation, so my family chalked it up to a one-time issue and focused on helping me recover from having my knee in an immobilizer for 6 weeks. (If you click here, you can start reading through my story!)
But, unfortunately, we quickly realized this wasn’t just a one-time thing. As the years went on, I had more and more knee problems. Crutches, knee braces, physical therapy, passes to sit out of gym class, knee surgeries – these all became way to normal for me. And in addition to the knee problems, I began to have other symptoms as well. Migraines, stomach issues, fatigue, and sleep problems. I’d always joke that I had the worst immune system because it seemed like I’d catch every single cold, flu and sinus infection that was going around. They all seemed like one-off occurrences and I never realized that they could all be linked together.
Fast forward to 2012 and I was doing exactly what I thought I was meant to do. I was a young, working professional, traveling the world and taking it by storm. But, unfortunately, my knee problems came back with a vengeance. 2 failed knee surgeries later, I ended up having to go out on disability from work. (Click here to read about it)
Over the next few years, I was diagnosed with many different conditions – Complex Regional Pain Syndrome, Anxiety, Depression, Melanoma, Prothrombin Thrombophilia, Psoriatic Arthritis and Avascular Necrosis (part of my left femur bone died). While they’re all very serious in nature, I always honed in on my Psoriatic Arthritis (PsA) and Avascular Necrosis (AVN) as my two biggest obstacles.
Path To Empowerment
Between these two conditions, I spent 5-6 days in bed with no energy, in severe pain and relied on crutches to get from point a to point b. I spent months in bed, years on crutches, and lived on pain killers 3 – 4 times a day. This quality of life was completely UNACCEPTABLE to me. I had been living this go-go-go lifestyle and was forced to move back in with my parents and live a bedridden existence.
Unsatisfied with the treatment I was receiving, I went from TOP doctor to doctor, trying to find solutions for both my PsA and AVN.
For my PsA, I found it increasingly obvious that my doctors just wanted to give me more medications for each of my symptoms. I was up to 9 different oral medications and 2 injections and they didn’t seem shy about shelling out more.
Searching for answers to my AVN, I went to the top orthopedics, top bone specialists, top cancer doctors – searching for ANY answer. I lost count at 29 different healthcare providers. I’d be so full of hope when I’d arrive for my appointment, only to walk out of their offices shattered after hearing “I know what AVN is, but I’m not sure how to treat it.” The “best” advice I received was to walk on crutches for 10 years, until my knee completely collapsed, and then have a knee replacement.
You can only have your heart broken so many times before you realize something needs to change. It became very apparent that if I truly wanted to get back to living a quality life, I had to take matters into my own hands, put in the work, do the research and make drastic lifestyle changes.
So what did I do? I empowered myself.
I did my own research, I talked to other patients, I scoured the internet for advice – I left no stone left unturned. I went back to my Mom’s written file on me and was able to start to connect the dots relatively easily. It actually shocked me how clear the picture became.
For my PsA, what ended up helping me the most was making dietary changes, getting on a supplement regiment, seeking out alternative therapies, avoiding toxins and making sure I always include mindfulness/meditation and yoga in my day.
And for my AVN, a Regenexx stem cell treatment allowed me to avoid joint replacement surgery and regrow my bone. It got me off all my pain killers and let me retire my crutches. After 3.5 years on them, my armpits were happy for the relief!
I searched for years for answers to my health problems, only to unlock them almost by myself. Because of my own research, I revolutionized my life. I went from those 5 to 6 days a week in bed, crutches, pain killers, 12 medications, and disability to being able to walk, teach yoga twice a week, a paired down medication list and working a job I love.
Bringing It All Together
In September 2016, I had the opportunity to give 2 Stanford Medicine X presentations. An ignite talk entitled “How I used social media, patient advocates, and my own research to regrow my femur bone” and a 20-minute breakout session titled “Patient Case Study: My data. My research. My results. How I used my own data to create a precision medicine approach to my autoimmunity”.
Standing up in front of the MedX crowd, I was mind blown. I was telling doctors, researchers, key thought leaders, and other patient advocates, how little old me got back to living a life she loved.
And it made me realize . . . my story is one of many.
Sure, parts of my story may be unique, but there are so many others out there taking control of their health just as I did. Others who don’t accept inadequate healthcare and who are determined to live their best life possible.
I challenge every chronic illness patient to take control of your health and never give up until you’re living the life you deserve.
Who knows, in addition to feeling better, one day you may be able to share your story with an audience like Stanford Medicine X as well!
To end, I’ll leave you with a replay of my Ignite talk specifically on my Regenexx stem cell for my avascular necrosis. Let me know what you think! I only had 5 minutes – hence why I talked SUPER DUPER FAST! I wish there was a recording of my 20-minute oral presentation, but as far as I know, there isn’t.
Wishing You A Pain Free Day!
