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San Diego, CA
I was in a state of shock when I was diagnosed with cancer, and although I knew it was important I ask questions, do my research and get second opinions, I honestly didn't know where to start. It was bad enough getting the diagnosis and then I felt like I had all this work to do and all this information to learn during a time that was extremely emotional for me and my family. When I googled cancer, over 1 billion links came up and it was somewhat overwhelming trying to navigate first steps. I just wanted a roadmap.
Almost everything the doctor said sounded like a foreign language. I was too embarrassed to ask him to explain certain things. Even some of the education I received from the nurse was hard to understand. If they want us to take an active role in our care, why do they make it so complex? Break it down for me as if I was a 5 year old so I don't feel so helpless in what's going on around me.
As soon as my husband was diagnosed, I wanted to talk to other patients to see how their experience was and what they would have done differently. I wanted to understand which doctors they used, what treatments they chose and why. Sometimes, I just wanted someone to talk to because I felt like I needed to motivate my husband to get through this, and I didn't want him to know I was terrified. I made a few friends online that helped me through some really tough times.
Even though I have insurance, there were many expenses I hadn't planned for, from copayments that aded up, to transportation costs back and forth from appointments. The pile of bills and not understanding coverage was initially very stressful. However, we learned of different programs that are available to help with expenses, tips to keep costs down, tools to keep track of our bills, and resources to explain it all. Understanding what costs to expect and how to manage those costs was half the battle, and allowed me to focus on getting the best possible care.