A journey from silence to advocacy, from pain to hope
My whole life, doctors just heard pieces. Never the whole picture. Never all of it put together. I got used to it, honestly. That's just how it was. You go in, they ask a few questions, you try to explain, but there's never enough time. The appointments are always rushed. You leave feeling like you said too much or not enough, but never quite right.
I learned to just give in to what doctors said. They're the experts, right? They know best. So when the pain started increasing, I figured it was just part of life. Getting older. Working too hard. Stress. All the usual explanations that make you feel like maybe you're just complaining too much.
I never even thought about an app being built from all this. I was just trying to get through each day, each appointment, each test.
But the pain kept increasing. It wasn't going away. It wasn't just stress or age or overwork. Something was wrong, and deep down, I knew it. Ken helped me see that I had to do something. I couldn't just keep accepting the fragments of care, the rushed appointments, the feeling of never being fully heard.
They wouldn't quit. Day after day, pounding, relentless. But how do you explain chronic pain in a 15-minute appointment?
Making it hard to work, hard to focus. Another specialist, another starting from scratch.
Like electrical shocks through my limbs. How do you describe that? How do you make someone understand?
The tipping point was the neurosurgeon appointment. I walked in with hope, with all my symptoms documented, ready to finally be heard. The medical PA said one thing. Then changed the notes. Then changed them again. My symptoms weren't being addressed. The impact of my stenosis was barely acknowledged, and only grudgingly after we pushed back.
That's when I felt it. Not resignation. Not acceptance. Anger. Real, burning anger. I was tired of feeling unheard. I was tired of being just another rushed appointment. I was tired of my pain being minimized.
That anger became motivation. For the first time, I wasn't just going to accept it. I was going to do something about it.
Ken is my rock. My cheerleader. My soulmate. He is always there for me, helping us get through this together. My advocate.
Without Ken, I never would have got the help I needed. I would have just given in to the doctors and continued on in life, accepting the pain, accepting being unheard, accepting that this was just how it was.
But Ken saw what I couldn't see. He heard what the doctors weren't hearing. He believed me when I felt like no one else did. He became the advocate I didn't know I needed.
While I was going through over 100 tests in 30 days, while we were discovering the brain tumor, the cervical stenosis, the autoimmune condition that had been hiding for years—Ken was there. Not just supporting me, but building something. Building a way for me to be heard. Building MedAdvocate.
I was involved in developing the website, reaching out as the one who experienced this. Every feature, every button, every way to log symptoms—I tested it. I lived it. Because I knew what it felt like to not have these tools. I knew what it felt like to walk into an appointment and struggle to remember, to explain, to be heard.
MedAdvocate became more than just an app. It became my voice. It became the organized, clear, comprehensive picture that doctors had never seen before. It became the tool that finally let me be heard.
That's what I want other patients to know. There is hope.
The journey is still challenging. I won't pretend it's easy. But with MedAdvocate, we can move forward in an organized and productive manner. We can walk into appointments prepared. We can show doctors the whole picture, not just fragments.
We can be heard.