I am so glad you found it helpful, Kirsten. I was concerned it was too verbose, but thought I better post it as is or I'd wait to edit it and then forget to post it at all :-) All my major experiences with this disease have been emergencies, through no fault of my own, and it's been an especially difficult learning curve. I have often been frustrated to find myself in a new position with no help, no understanding of what was happening and then medical professionals that acted like, "what did I expect?" Not to be where I am! That's what I expected! As a result, in addition to experience, I've gathered a lot of health/medical knowledge in the past 10 years. I hoped my post would paint a realistic picture -- not positive or negative necessarily, just some possibilities to consider.
I am so glad to hear that you are able to focus more of your attention on your health now -- it takes up a lot of time and energy to keep up! And I am very hopeful that the attention will make a positive difference in your experience. Bless you on your road ahead! -- Jennifer