Hello Maggie @noosat1, welcome to Mayo Clinic Connect. Thank you for sharing with us. Also, thanks for the kind words but I'm just a patient like you. I am fortunate enough to be a volunteer mentor to help folks find their way around Connect and share my experiences and treatments - which hopefully help other members. One of the good things about Connect is it will help you learn more about your condition and at the same time help you become a better advocate for your health. It sounds like you have a lot of those traits now with good understanding and expectations of managing your lifestyle and quality of life...much better than myself.
May I ask if you mentioned to your doctor about having dizzy spells and fatigue? It might be a good idea to discuss your plans with your doctor to keep them in the loop.
John
P.S. - Just in case you need a little positive energy, one of my favorite sites has short videos that are really uplifting.
-- https://www.resilientoption.com/
I have an appointment with my regular physician in a couple of weeks. I have been keeping a daily log, which I will condense and discuss with him.. Even though there was some "bungling" with misdiagnosis in the beginning, his PA was partly to blame, I do trust him. I also have routine visit with cardiologist. I have learnt that even when one has good, trustworthy physicians, it is important to help manage your care yourself. An aside, for year I have laughed at the question "what is your pain 1-10?" Every body is different and we certainly have different pain tolerances. In my middle years, as a competitive runner, I certainly learned the difference between discomfort and Pain. I could run through discomfort, but not pain. I m afraid in the present culture, we are told discomfort is pain which has to be repressed. Hence the overuse of painkillers. I just want to have what I consider a quality of lfe, which does accept some pain.