One of the main reasons I started this blog was because my disease has made me driven and unrelenting when it comes to finding answers and help. I always thought I was an assertive person, but having something seriously wrong with me and navigating our healthcare system has become a job for me, taught me so much and has impassioned me to help others.
I want to share the beginning of my journey and why pushing for answers has helped me to be where I am today.
It was September 2011 when I first started having pain in my knees. I’d gone for a run that day and thought it was weird that I had pain, after the pain continued for a week I thought I should go to the doctor. When I saw my GP she told me I had patellofemoral syndrome, also called ‘runner’s knee’, meaning my patellar was not tracking properly. She prescribed physical therapy and I went to a few sessions, but every time I went to PT the pain got worse and worse. I lived in San Francisco at the time and after a few weeks I couldn’t even walk to the physical therapy office anymore.
I called my doctor, she was dismissive, she was convinced it was runner’s knee and gave me a cortisone injection. The injection did nothing, in fact it made it worse. I called my doctor two days later and couldn’t get her on the phone and cried to the assistant who picked up and said, “listen I know there is something really wrong with me and I need further diagnostics”. My doctor ordered me an MRI.
When we got the report back she said it showed nothing, EXCEPT there was a line in the report that said I had a heterozygous marrow signal. I had no idea what that meant, she told me she didn’t know what it indicated and neither did any of the other doctors in her office. I searched heterozygous marrow signal on the web, hardly any postings on it came up, but I did read that it could be an indication of bone cancer, or lesions. My gut feeling was that my heterozygous marrow signal was an indication that something was going on in my body whether my doctor believed so or not. At that point I called my doctor and said I needed to meet with an orthopedic specialist.
I will share more of story tomorrow, but what I realized very early on was that NO ONE was going to care about me as much as I did! I have a wonderful supportive husband and family, but I listened to my body and I knew it was trying to tell me something and I have became my most important advocate.
A picture of my Mom and I, who has looked after me with so much fierce love.