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Replies to "I think half the battle is keeping from driving myself nuts with all the thoughts and..."
I think I already have made myself crazy. My pulmonologist told me to stop all the reading and research and let him take care of it. He pretty much told me I am making myself worse by doing so. I need a Calgon take me away day.
With no disrespect to your pulmonologist- I am sure he wants to keep you calm because being anxious about it all robs you of life’s joys. However, reading is a great learning/teaching tool. Just try to keep it all in perspective if you can do that.
I agree with @irene5. The reason so many of us were misdiagnosed is that there was no information available until recently. Read and learn from others, but don't fret about what might happen in the future. A Calgon bath sounds good for reducing stress and anxiety. There are many evidence-based techniques for calming anxiety on line. Check a reputable site like WebMD.
It’s best not to do that. You’ll make yourself crazy.