During this journey we’ve learned that the doctors really don’t tell you a whole lot. They give you the basics and the things they are required to tell you by law but in general you’re on your own or you’re in the dark.
Anyone who knows me knows that I love to learn and I regularly read about things “just for fun” and I certainly read about things before I jump in. But I wasn’t like that with this diagnosis. I shut down and didn’t really start looking or asking questions for months and months.
Fortunately, Andy was still critically thinking and took on researching for us both.
Unfortunately, my brain was spinning so quickly that I wasn’t very receptive to his research and learning.
Fortunately, he loved me through and despite my arguing.
Unfortunately, it meant a lot of tears and frustration in the process.
I wanted to believe that if there was something to know that my doctors would know and would tell me. I also assumed that words like few, most and significant had semi-concrete definitions.
I couldn’t have been more wrong.
What I learned is that there are a ton of well researched things that you can do to help your body fight, ease your side effects and generally feel better.
What I learned is that when a doctor asks if you have questions, they don’t want you to have any and they are unlikely to actually answer the ones you do have unless you push them.
What I learned is that when you ask questions, press for answers and ask to have time to make decisions, your doctors call you emotional, distraught and overwhelmed in their notes – yes, even in the notes you can see in your online chart.
I wish I could say that we are done asking questions, learning about the medications I’m on and ways to monitor them and generally fighting for information and best care but we’re not. The process is likely never ending.
It stinks.
Pray for us.
Pray that we would continue to be able to learn what we need to know in order for me to feel the best and be the healthiest.
Pray that we can muddle through the medical jargon and research without overwhelm and fear that is so easy to let creep in.
Pray that we can work with my doctors or if we can’t that we find some that we can.
Pray that we remember that all wisdom comes from God and that He is happy to bestow it on His children if we ask.